tag:blogger.com,1999:blog-191024942024-03-15T18:09:24.477-07:00CLL DiaryLIVING WITH CHRONIC LYMPHOCYTIC LEUKEMIA, RICHTER'S TRANSFORMATION, DLBCL, AND EVERYTHING ELSE David Arensonhttp://www.blogger.com/profile/13876562687586184006noreply@blogger.comBlogger199125tag:blogger.com,1999:blog-19102494.post-20206212548319425652014-04-04T17:31:00.000-07:002014-04-04T17:33:11.582-07:00<br />
My beloved soulmate, David, died on March 6.<br />
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I'll post details when I'm emotionally able.<br />
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Marilyn </div>
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David Arensonhttp://www.blogger.com/profile/13876562687586184006noreply@blogger.com63tag:blogger.com,1999:blog-19102494.post-84101830954048093722014-02-13T13:02:00.001-07:002014-02-15T09:25:50.036-07:00The road ahead<span style="font-family: "Trebuchet MS", sans-serif;">I've met with my transplant/CLL doctor, Jose Leis, at the Mayo Clinic in Phoenix. He was pleased with my response to Ibrutinib -- dramatic shrinkage of abdominal nodes -- and laid out the course I will be following in the coming months.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">For a transplant to have the best chance of success, he emphasized that I need to go into it with nodes no larger than 5 cm. I have a couple of abdominal masses that are well in excess of that, even after eight days of Ibrutinib. Dr. Leis pointed out that Ibrutnib can take a couple of months to reach its maximum effectiveness. So he wants me to stay on it for a few months before we even begin to think about transplant. </span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">I will likely have a CT scan at the end of that period, and it is possible my disease will be restaged. The hope is that Ibrutinib will do the heavy lifting </span><span style="font-family: "Trebuchet MS", sans-serif;">and get those nodes down.</span> <span style="font-family: "Trebuchet MS", sans-serif;">I'll be seeing him once a month, and as we cross various bridges, we'll adjust things as we have to. It's possible that we may add Gazyva </span><span style="font-family: "Trebuchet MS", sans-serif;"><span class="st">(obinutuzumab)</span>, the new anti-CD20 monoclonal, at some point, especially if the lymphocyte count in my blood rises dramatically, which is what can happen when Ibrutinib kicks the errant B-cells out of the nodes.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">Meanwhile, a donor has been found. Somewhere out there is a man in his 40s</span> <span style="font-family: "Trebuchet MS", sans-serif;">who is, as Dr. Leis termed it, a 9.5 out of 10 match. The one allele where there is a mismatch, the DQ, is not clinically significant, according to the doctor. A six-month hold has been placed on the donor, which means he's reserved for me during that time. Let's hope he avoids flying anvils.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">We discussed the prospect of Ibrutinib controlling DLBCL without a transplant. Dr. Leis told me this is unproven territory, and my tendency is to go for a transplant, with all the attendant risks. I will never be healthier than I am now, and DLBCL is not CLL. It can kill me, rapidly, and I can tell you from experience that it would be a horrible death, with tumors choking off the body's organs within a month or two. I don't want to die in a hospital, loaded with painkillers, living in a daze.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">With most varieties of CLL, time is not of the essence. With aggressive Richter's and resulting DLBCL, the opposite is true. CLL can lead to a certain complacency, but aggressive DLBCL demands action. (The doctor pointed out that DLBCL arising from Richter's is often more aggressive than de novo DLBCL, which arises on its own.)</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">So things are going my way at the moment. Of course, as Dr. Leis pointed out, there is still a long road ahead, and there's no guarantee that something won't go wrong. But I feel that I'm in good hands, and on the right track. I'm looking forward to a couple of months during which I can gain my strength back following January's chemo, and be in good shape for a transplant.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">At least so far, let my story be an example of what can happen when you don't give up. Marilyn was told by more than one doctor and chemo nurse since my Richter's exploded last April that I probably wasn't going to make it. </span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">Well, here I am, defying the odds. I am reminded of the bell curve. There's a good end of it, and that's where I want to be. </span>David Arensonhttp://www.blogger.com/profile/13876562687586184006noreply@blogger.com14tag:blogger.com,1999:blog-19102494.post-68366950864779028892014-02-09T15:11:00.000-07:002014-02-12T17:53:23.237-07:00Getting Ibrutinib<span style="font-family: "Trebuchet MS", sans-serif;"><b><i>Update: Ibrutinib has just been <a href="http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm385764.htm">approved</a> by the FDA for CLL, which should make it widely available to CLL and Richter's patients.</i></b></span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">I have been on Ibrutinib for just six days now -- 420 mg daily -- and the effect has been nothing short of extraordinary. An abdominal lymph node mass that I keep track of has shrunk considerably and I have lost 14 pounds, most of it edema caused by the swollen nodes blocking things up. My belly has gone from looking about seven months pregnant to about three.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">This good response is particularly welcome since Ibrutinib was my last, best hope in terms of therapy to reduce and control my post-Richter's aggressive lymphoma, DLBCL. The smaller the tumor burden when it comes time for transplant conditioning, the better. And if I can enter the transplant with nodes under 5 cm, my chances of success are greatly improved. </span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">As you may know, Ibrutinib has shown excellent results in clinical trials in both CLL and DLBCL. It's not approved by the FDA for either disease yet, but when it is approved it will no doubt be a game-changer.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">But what if you need it now?</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">As a public service, let me tell you a little bit about my experience of not getting Ibrutinib, and then getting it. It comes down to standard of care -- your local oncologist may lack the wherewithal to get the job done, while a doctor at an institution that provides better care may have a better idea of how the system works and how to get the drug. </span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;"><span style="font-family: "Trebuchet MS", sans-serif;">Ibrutinib (now also known as Imbruvica) was approved in November by the FDA for Mantle Cell Lymphoma, making it more widely available, including for "off-label" use. </span>I had assumed that one needed to get into a clinical trial to get Ibrutinib. Dr. Droll, my local oncologist, thought maybe I could qualify for compassionate use of the drug. He assigned the task of inquiring to a research nurse in his office, and nothing happened. (He is part of a mid-level, multi-doctor practice, so it's not podunk, but not adequate to the task, either.) He was reticent to pursue off-label use, and my guess is this may have had something to do with the liability policies of his practice.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">Meanwhile, January 1 rolled around and, thanks to the Affordable Care Act, I was able to get much-improved insurance through Blue Cross. On January 7, I went in for a transplant consultation with Dr. Jose Leis at the Mayo Clinic in Phoenix. Dr, Leis also thought Ibrutinib might be my best option. How do I get my hands on it?, I inquired.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">Dr. Leis simply wrote a prescription. Ibrutinib is available at a small number of specialty pharmacies. Back when I took Revlimid, I dealt with one of those -- Biologics, a specialty pharmacy in North Carolina. They would send me a new supply of Revlimid via FedEx once a month.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">Well, Ibrutinib is handled in a similar way. In this case, the prescription went to another specialty pharmacy, Avella, which then contacted Blue Cross for approval. The helpful lady at the pharmacy explained that other patients in my situation had all been approved by my insurance, and after about four business days, I was, too. Et voila, a bottle of Ibrutinib was sent to me via FedEx.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">No fuss, no muss, and it took about three weeks from the time Dr. Leis wrote the prescription. If you could truly benefit from Ibrutinib and your doctor is telling you it is impossible or nearly impossible to get, that's just not the case. </span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">One of the great benefits of my new insurance is being able to have access to a higher standard of care. For a patient in a tricky situation, such as myself, this makes an important difference. Dealing with a doctor and a staff who are on top of things, who haven't missed a beat, is a great relief.</span><br />
<br />David Arensonhttp://www.blogger.com/profile/13876562687586184006noreply@blogger.com6tag:blogger.com,1999:blog-19102494.post-18247318684486550812014-01-30T15:57:00.000-07:002014-01-30T15:57:44.754-07:00Riding the Richter's roller coaster<span style="font-family: "Trebuchet MS", sans-serif;">As the title of this post implies, things have changed since October</span>,<span style="font-family: "Trebuchet MS", sans-serif;"> when it appeared I had achieved a pretty good response to treatment.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">Seven weeks later, in December, I began to relapse, and it has been a tough slog ever since. I could regale you with all the details -- and perhaps someday I will, when I get a chance, which could be coning up soon. The one image I would like to leave you with is New Year's Eve, which I spent in the hospital getting chemo under my old insurance. At the stroke of midnight, my new insurance kicked in. Which, I think, may make me the first person in the country to use their new insurance under the Affordable Care Act. </span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">As required by the law, my new insurance provides for stem cell transplants, which my old insurance did not (which means, by the way, that Barack Obama may save my life). And so despite the relapse, I have some good news:</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">I am on track for an allogenic transplant within the next couple of months at the Mayo Clinic in Phoenix, AZ under the care of Dr. Jose Leis. Mayo has found three potential 10/10 donor matches, a far better pool than I expected given my unusual Jewish-Irish background. </span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">The success of any transplant depends on the tumor burden going in, and mine has been big. But the Hail Mary chemo I have done (more R-EPCH) has set the DLBCL back. And I have been approved for Ibrutinib, which was Dr. Leis' hope and mine. Studies have shown it to be effective in cases of relapsed aggressive DLBCL, which is what I have. It doesn't work in all cases, but it works in many, so there are still miles to go until I sleep in terms of conditioning for the transplant. </span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">Despite the exhausting roller coaster ride of December and January, I may soon find myself cooped up for 70 days in what they call a transplant pod, with nothing better to do than blog about my experiences -- including some important things I have learned in the past ten years.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">My thanks to all of you who have written; I simply haven't had the time to respond personally -- or to write this simple post -- until now. The good wishes of friends and family help keep me going. Most of all, I have the love and incredible strength of my wife, Marilyn. This is <i>our</i> fight. And to paraphrase Churchill, we will never surrender. There have been many truly dark hours, but I see dawn ahead. </span>David Arensonhttp://www.blogger.com/profile/13876562687586184006noreply@blogger.com8tag:blogger.com,1999:blog-19102494.post-57907911943359881622013-10-10T16:01:00.001-07:002013-10-10T17:37:24.435-07:00Good news, everyone!<span style="font-family: "Trebuchet MS", sans-serif;">In the immortal words of Futurama's Professor Hubert Farnsworth, who I am growing to look like more every day, "Good news, everyone!"</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">Since my last post I've gotten some encouraging results from a PET/CT scan, and I've passed three dates of note on the calendar.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">First, the PET/CT, which was done as I was finishing the fourth round of R-EPCH in early September. A PET/CT is how doctors keep track of the progress being made by DLBCL patients (remember, thanks to Richter's Transformation some of my CLL became Diffuse Large B Cell Lymphoma). </span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">My first PET/CT in April, at diagnosis, was scary. It showed massive tumors, "too numerous to count," which lit up like a Christmas tree. When I say "lit up," I mean that the standard uptake value (SUV) of the radioactive glucose solution they put in my bloodstream was positive for aggressive lymphoma. (Oh how I wish I lived in a world where the only thing SUV meant to me was "sport utility vehicle") </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7EqwzylasMQoshNFntmxIjy6yoKlWgOqIqJeZU7S4NGK8NnrfVOuOFt_18XC9Ale29eFkvpMCf1epUbGqCqES67iifSRkO6YgUjKo0n4jbjxJzbzE2RIWNZyl7QJTktYd9rEh8Q/s1600/farnsworth5.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7EqwzylasMQoshNFntmxIjy6yoKlWgOqIqJeZU7S4NGK8NnrfVOuOFt_18XC9Ale29eFkvpMCf1epUbGqCqES67iifSRkO6YgUjKo0n4jbjxJzbzE2RIWNZyl7QJTktYd9rEh8Q/s1600/farnsworth5.jpg" /></a></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">The SUV of the tumors ranged from a high of 26.20 down to 14.03. By comparison, "background" SUV -- that of noncancerous normal tissues, is 2.5 in the liver and 1.5 to 2.0 in the mediastinal blood pool. Both are often used as comparison tools. According to one research <a href="http://jco.ascopubs.org/content/23/21/4577.full">paper</a>: </span><br />
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<span style="color: #0b5394;"><span style="font-family: "Trebuchet MS", sans-serif;">a</span> SUV ≥ 13 in the most intense lesion is highly indicative of
aggressive histology, while <br />a SUV ≤ 6 is much more compatible with indolent lymphoma, unless
the clinical course indicates otherwise </span></h5>
<span style="font-family: "Trebuchet MS", sans-serif;">My September scan showed a marked reduction in swollen lymph nodes, with few remaining. And the SUV of the node under my left arm, for example, dropped from 17.2 in April to 1.1 in September. The largest nodal mass in my abdomen showed an SUV drop from 18.8 to 1.8 (and a drop in size from 25 x 25 cm in April to 13.4 x 9.2).</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">In other words, my SUV was now at background levels. My oncologist, Dr. Droll, said, "If there were still high-grade lymphoma, it wouldn't look like this. . . . These things light up like CLL would light up."</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">Needless to say, Marilyn and I were quite happy with the report, which was better than we dared to hope. </span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">Does that mean I'm lymphoma-free, back to plain old CLL, which is, I hate to say it, by comparison a "good" cancer, or at least much better-behaved?</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">Well, maybe. I have learned that a CR ("complete response") in DLBCL is very much like a CR in CLL: there may still be some cancer cells lurking around that still may cause a relapse, not all of which are detectable on even the most sophisticated test. As with CLL, clinical symptoms are the bottom line, and only time will tell if I relapse.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhO9xnqQBvBpmI8wziWKO_uMlSTQcvhi_Q_-phWjOACM5Gx_xIxC31r-YzlMxtfoQvgzetDUhAJbkdZ6tr4Q3Dw5YceAPU9YUxwlUTJ3pQoLT4P1Ehd20eycUJqMnsJQItysDlqEA/s1600/farnsworth6.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhO9xnqQBvBpmI8wziWKO_uMlSTQcvhi_Q_-phWjOACM5Gx_xIxC31r-YzlMxtfoQvgzetDUhAJbkdZ6tr4Q3Dw5YceAPU9YUxwlUTJ3pQoLT4P1Ehd20eycUJqMnsJQItysDlqEA/s200/farnsworth6.jpg" width="181" /></a></span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">I still have some swollen nodes and an enlarged spleen. Maybe they're all filled with CLL, and maybe there are just a few really nasty lymphoma cells that have survived and are lurking in there somewhere. </span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">Does my response to the chemo mean that I can put off having a transplant? Possibly. But there is still wisdom in considering the transplant option. CLL doesn't get better the longer you have it, and neither, I presume, does DLBCL. (As one lymphoma expert pointed out to me, the CLL could always transform <i>again</i>.) At the age of 57 I am still young enough to tolerate a transplant -- I have tolerated the chemo quite well -- but I won't be a picture of youth and vigor forever. </span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">Further, to get me to this point I have undergone some heavy-duty chemo that I can't responsibly use again, even as transplant conditioning. Adriamycin is a drug that does wonders against lymphoma, and it is a component of both R-EPOCH and R-CHOP. It has also been implicated in congestive heart failure if you do too much of it, and if I were to do any more past Round 6 of R-EPCH, I would be doing too much.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">Speaking of chemo, it is the standard of care for DLBCL to go the distance, all six rounds, of R-EPCH, even if the PET/CT after the fourth shows no evidence of lymphoma. The theory is that the more chemo, the more undetectable stuff you kill, the better off you are. So I have now completed Round 5 and I'm scheduled to go back to the hospital for the final round next week. </span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">We've spent more than 40 days in the hospital this year -- I say "we" because Marilyn comes with me and sleeps in a fold-out chair next to me; hospitals really need double beds. The chemo is given over five days, with a visit to the doctor's office for a Neulasta shot on the sixth. </span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">The hospital staff -- the chemo nurses of Six South at Banner Baywood Medical Center in Mesa, AZ -- have been great; I spent my birthday in there during the last round, and they surprised me with a round of "Happy Birthday" and a gift. Food service even provided a small cake.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">The birthday is one of the calendar dates I mentioned at the start of this post. Another is the September 3 anniversary of my CLL diagnosis -- my tenth anniversary, as it turns out. No singing, no cake, just an "ugh" in recognition of the event.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">The last date of note was October 1, the opening of the Health Insurance Marketplace. Thanks to President Obama and the Democrats, I will be able to purchase health insurance that covers a transplant. My current health plan specifically prohibits it, and because of my preexisting conditions, no one else would insure me -- until now, when preexisting conditions cannot be held against you.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">So, bottom line, the Affordable Care Act is potentially a matter of life and death for me. Thank you, Mr. President. May we, as a nation, always listen to the better angels of our nature. </span><br />
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David Arensonhttp://www.blogger.com/profile/13876562687586184006noreply@blogger.com15tag:blogger.com,1999:blog-19102494.post-51677555866085037842013-08-25T11:58:00.000-07:002013-08-25T11:58:05.002-07:00The cancer survivors park<span style="font-family: "Trebuchet MS", sans-serif;">Marilyn and I ran across a sculpture garden devoted to cancer survivors in a park near downtown Santa Rosa, California. </span><span style="font-family: "Trebuchet MS", sans-serif;"><span style="font-family: "Trebuchet MS", sans-serif;">It's properly known as the <i>Richard and Annette Bloch Cancer Survivors Plaza at Fremont Park</i>, and it</span> was an unexpected pleasure and an inspirational place.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">After spending some time there, I found myself wondering why there aren't more places like this, tangible art installations where those of us fighting cancer can take time to reflect and find encouragement. And then, lo and behold, I looked it up on the internet and found that there are <a href="http://blochcancer.org/2009/2008-parks-tour/">24 of these</a> in the U.S. and Canada, all sponsored by the R.A. Bloch Cancer Foundation. It turns out that Richard Bloch, a founder of the tax service H & R Block, was a lung and colon cancer survivor who died of heart failure in 2004 at the age of 78. His foundation does more than encourage public art, but it is the art that captures the imagination in a way that words sometimes can't.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">The park does contain some pretty good words, by the way, which can be found on numerous plaques offering spot-on cancer-fighting advice. One grouping of plaques is known as the Positive Mental Attitude Walk. </span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">So consider visiting a cancer survivors park near you. Below are some photos we took in Santa Rosa, just in case you can't make it there. All the parks have the same sculpture by Victor Salmones, depicting people of various ages entering -- and emerging from -- the challenge of cancer, represented by a series of distorted squares. You'll see me in one photo, ready to leave the last square; I have also updated my photo at the top of the blog to reflect the way I look now -- namely, hairless. </span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">Speaking of surviving cancer, I have now completed three rounds of R-EPCH, which came on top of two rounds of OFAR. The tumor burden is vastly reduced; during my last treatment there was no threat of tumor lysis and no significant increase in LDH. It appears that the chemo has done most of what it can do. Nodes are still palpable under my arms, but none can be felt in the abdomen. That doesn't mean they're not there; to see where things stand, a PET scan may be in order soon. It's likely there will be between one and three more rounds of chemo, followed by a maintenance drug to get me past January 1, when new health insurance kicks in and provides coverage for a stem cell transplant. It looks like I will be having an interesting year; may yours be as dull as possible.</span><br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgV-DsmtAQCp69qM4as8evPIn7X5o0yHJ0fXXvL7wUInlsL4VELhY-1sPnGV0Qhh_NaAKRuYM5-H1vBcWMW-OqJNOVjB1kDUMHj35bAgCa2sNN0Vw6c2Wf_bmmjX2vQwtJFlP0YJg/s1600/img_1671-2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgV-DsmtAQCp69qM4as8evPIn7X5o0yHJ0fXXvL7wUInlsL4VELhY-1sPnGV0Qhh_NaAKRuYM5-H1vBcWMW-OqJNOVjB1kDUMHj35bAgCa2sNN0Vw6c2Wf_bmmjX2vQwtJFlP0YJg/s400/img_1671-2.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"There is no such thing as false hope for a cancer patient. Hope is as unique with each individual as a fingerprint.
For some it is the hope to make a complete recovery. But it might also
be the hope to die peacefully; the hope to live until a specific event
happens; the hope to live with disease; the hope to have their doctor
with them when needed; the hope to enjoy today." -- Richard A. Bloch</td></tr>
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<br />David Arensonhttp://www.blogger.com/profile/13876562687586184006noreply@blogger.com8tag:blogger.com,1999:blog-19102494.post-8285798560914170342013-07-17T17:16:00.000-07:002013-07-24T10:55:26.372-07:00I'm finally not feeling like crap<span style="font-family: "Trebuchet MS", sans-serif;"><span style="font-size: large;">Greetings from the cancer ward</span> of Banner Baywood Medical Center in Mesa, AZ, where I am undergoing round four of chemotherapy to combat aggressive B-cell lymphoma brought on by Richter's Transformation. Our arrival Monday -- Marilyn stays with me for all five fun-filled nights -- was like old home week, the friendly staff having seen me when things were at their worst back in April, and much-improved today. The fact that I had arrived on my own two feet, and not in a wheelchair, spoke volumes. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-family: "Trebuchet MS", sans-serif;"><span style="font-size: small;">As I mentioned</span> in my last post, Richter's Transformation came on with shock and awe in the middle of April. I put on an enormous amount of weight in a short time, gaining some 40 pounds in two weeks, and looking in the end like a bedraggled Sumo wrestler. My giant belly was mostly a collection of tumorous lymph nodes that had fused together into larger tumorous masses, and this led to edema in the legs, feet, and, ahem, scrotum and penis. Yes, folks, for awhile there I could have been a porn star. The tumors were interfering with the inferior vena cava and just about everything else in the middle and lower sections of my body. </span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">I arrived at the ER at Banner Baywood on the morning of April 25 -- Marilyn and I had raced back to Arizona after seeing Dr. Thomas Kipps at UC San Diego, and Mesa is the home of my local oncologist, Dr. Droll. I had just found very obvious blood in my urine, and kidney damage was one of Dr. Kipps' main worries. I could tell in the eyes of the nurses and doctors that I looked like a true emergency case, so much so that one doctor took Marilyn aside and began to talk about hospice, which, as you might imagine, was not a welcome topic. </span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">During the weeks prior to treatment, as my belly grew, pain grew with it. The burgeoning tumors put stress on my lower back, pushing against nerves there. This required that I sleep sitting up in a chair, and even then it took oxycodone to be pain-free. Laying on my back was an invitation to torture.</span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">Unfortunately, one of the tools used to diagnose Richter's is a PET scan, which I had that first day in the hospital. The PET scan requires that you lay flat on your back and not move for 25 minutes, with your head stuck in a padded vise-like thing to keep you in place. It was the most painful experience of my life. That every moment was an eternity is a cliche, but true in this case. The nurse tried to take my mind off things by asking me questions about my work, my family, and my pets. Most of the time I was left to fend for myself. I sang the <i>Star-Spangled Banner</i>, which is good for about two minutes. I sang what I could remember of Warren Zevon's <a href="https://www.youtube.com/watch?v=nhSc8qVMjKM"><i>Werewolves of London</i></a>. The refrain that was supposed to be <i>ah-hoo, werewolves of London</i> became <i>OWWW! werewolves of London, </i>belted out at the top of my lungs<i>. </i></span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">The PET scan measured glucose uptake by lymph nodes; mine was off the charts in a number of nodes, confirming the Richter's diagnosis. The largest lymph node aggregate mass measured 24 cm by 24 cm (about 10" by 10") and had a maximum glucose uptake value of 26.20, which is well beyond typical. This was followed by a biopsy of one of the nodes, which again confirmed the diagnosis. What I have is Diffuse Large B Cell Lymphoma (DLBCL) of the aggressive variety. This is <a href="https://www.youtube.com/watch?v=n-wUdetAAlY">Godzilla to CLL's Bambi</a>. I still have CLL, but it's basically irrelevant.<i> </i></span><br />
<span style="font-family: "Trebuchet MS", sans-serif;"><i><br /></i></span>
<span style="font-family: "Trebuchet MS", sans-serif;">Cut to eight days later, our arrival home. Emergency chemotherapy had knocked the tumors back in a big way -- I had lost 40 pounds, and soon lost 10 pounds more. I had managed to avoid kidney damage, including tumor lysis. The chemo also knocked me back in a big way. It was nothing like any chemo I had experienced before, and doing the simplest thing -- getting up out of a chair, for example -- required a Herculean effort.</span><br />
<span style="font-family: "Trebuchet MS", sans-serif;"><br /></span>
<span style="font-family: "Trebuchet MS", sans-serif;"><span style="font-size: large;">The chemo in question</span> was OFAR --oxaliplatin, fludarabine, cytarabine, and rituximab -- which had been recommended by Dr. Kipps, and was designed to be given every four weeks. OFAR has been the subject of two trials at MD Anderson, with the second trial also being done at UC San Diego and Ohio State. It's no miracle cure, but proponents say it may be better than R-CHOP, the current standard of care.</span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">In my case, it created hideous quality-of-life issues and ultimately failed as a treatment. Between cycles I was left with an extreme lack of energy, both physical and mental, which did not improve over time. At one point I started eating less and less, and losing more and more weight, until this became a serious concern and Marilyn started pumping me full of high-calorie whey protein milkshakes. One challenge I was facing (and still am) is the loss of muscle mass. I didn't need to be losing more, and I need to regain the strength I have lost. It's no fun being too weak to get off the toilet without having to grab something to help you up.</span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">I could have put up with all this, albeit with much bitching and moaning, had OFAR continued to work well. But I relapsed just shy of three weeks after the second treatment; the telltale signs included exhaustion, night sweats, and a lot of panting following almost any form of physical movement. I was also feeling a small crick in my back, tumors starting to settle against nerves again.</span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">A change was called for, and at Dr. Droll's suggestion, it was to be R-EPOCH without the "O" (more on that later). Frankly, he had been suspicious of OFAR from the start. He's not a fan of MD Anderson studies, once joking that they should be published in <i>The Journal of Irreproducible Results</i>.</span><span style="font-family: "Trebuchet MS", sans-serif;"> He felt a protocol with adriamycin would be of the greatest benefit. R-EPOCH includes adriamycin and is basically R-CHOP with the addition of etoposide, another potentially powerful drug.</span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">And so I arrived at the hospital on Friday, June 21, for round three of chemo, which was also round one of R-EPCH. I looked like crap again, albeit without the Sumo belly. Dr. Droll was worried that I wasn't going to be up to the task ahead, that my heart might be as weak as my general constitution, and told Marilyn, privately, that he thought I only had a 50/50 chance of living through the weekend.</span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">It turns out that Dr. Droll, while making good use of his cell phone, does not have a direct line to God. My heart rate was initially 144, and calmed down into the 80s a few hours later, after chemo began. My breathlessness abated. The next day I informed Dr. Droll, on one of his early-morning rounds, that reports of my death had been greatly exaggerated. </span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">The "O" in R-EPOCH stands for oncovin, aka vincristine. I had <a href="http://clldiary.blogspot.com/2009/01/new-adventures-of-old-vincristine.html">bad peripheral neuropathy</a> of the legs after using a small dose of vincristine in 2007; Dr. Droll said it was not an especially important part of the protocol and left it out.</span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">My response to R-EPCH -- rituximab, etoposide, prednisone, cyclophosphamide, and doxorubicin, aka adriamycin, and who knows why they give it an "H" -- has been quite good, with the tumors getting smaller and no sign of a relapse between cycles. I feel much better, pretty much like normal, although limited to some extent by the low hemoglobin that is a cyclic side effect of the cell kill caused by the chemo. But I can drive, take things to the recycling center, shower with ease, cook breakfast, and leap 14 stairs in 14 bounds instead of 28 -- all things I could not do between rounds of OFAR.</span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">Why did OFAR fail? There are no guarantees in the chemo business. OFAR worked wonders the first round, taking down the easy stuff, and thankfully most of that Sumo weight was easy stuff. But as with all chemo, the disease that's left over is harder to kill. This is where OFAR was not up to the task, and where R-EPCH evidently is. </span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">R-EPCH is done every three weeks, in the hospital, as the etoposide and adriamycin are infused together over a 96-hour period. </span><span style="font-family: "Trebuchet MS", sans-serif;">Just about the only side-effect so far has been hair loss -- I expect to be bald in a few more weeks. </span><span style="font-family: "Trebuchet MS", sans-serif;">I weigh 160 now and my belly, while still pronounced, is much less pregnant-looking. It's mushy, not taut with tumors. </span><br />
<span style="font-family: "Trebuchet MS", sans-serif;"><br /></span>
<span style="font-family: "Trebuchet MS", sans-serif;">As I write this I am in the middle of chemo round four, and R-EPCH round two. Dr. Droll examined me this morning and said I am less nodey than he has ever seen me. The same man who said some three weeks ago that I might not live through the weekend now says he's pleased with my condition and the results of the chemo. My spleen is a little enlarged; that could be plain old CLL, about which we aren't too concerned. Only another PET scan, which measures that glucose uptake, can differentiate between the nodes that contain CLL and those comprised of DLBCL. Another bit of good news is that my LDH has dropped, from more than 500 when doing OFAR, to the 200s today. This indicates, most likely, that there is less tumor around to battle and destroy. Studies show that patients with LDH below 500 have better outcomes.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">But I still have swollen nodes under the arms and in the abdomen. The possibility that the DLBCL nodes won't disappear completely is why the chemo may be followed by a stem cell transplant. More on that -- and the maddeningly absurd health insurance issues it entails -- later. Transplants involve their own travails, but the silver lining is that they can be curative. Assuming I find a good matched unrelated donor, an allogenic transplant could cure both the CLL and DLBCL. Failing that, an autologous transplant could at least cure the DLBCL, putting me back to square one with CLL again, which doesn't seem so bad by comparison -- unless, of course, the CLL transforms a second time (!).</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">Longtime readers may note that I finally took the fludarabine plunge thanks to OFAR. And I am now experiencing the "red death," aka adriamycin, which is in fact red in color and which can, if overused, set up congestive heart failure down the road. These drugs are not lightweight, soft-glove treatments, but aggressive DLBCL is not a shy, retiring disease. I have had no hesitation in using whatever I need to use in order to fight this thing effectively. Funny how the nuclear option becomes an easy one when circumstances call for it.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;"><span style="font-size: large;">So this is my new normal.</span> Marilyn and I recently saw a lymphoma expert at UCLA -- Dr. Sven de Vos -- who said dose-adjusted R-EPOCH was his first choice for DLBCL, and that the transplant plan made a great deal of sense. This confirmed my feeling that I am on the right track. Dose adjustment basically means that they use blood tests to find out the nadirs of your neutrophils and platelets following therapy; if you have high nadirs, this means you can tolerate higher doses of therapy next time. Dr. Droll will adopt this strategy for future rounds. </span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">Meanwhile, there's nothing to do from here but "enjoy" the ride. The future, with all its high-stakes therapy and challenges, will still probably be an improvement over the recent past. </span>
<span style="font-family: "Trebuchet MS", sans-serif;">The two months following mid-April were the most god-awful stressful of my adult life, and of Marilyn's. I have often said that the caregiver bears a greater burden, namely the prospect of losing their loved one and being left alone, missing an essential half. Top that with having to do <i>everything</i> -- all the driving, all the chores at home that I used to do, dealing with doctors and nurses, attending to me and my sometimes scary symptoms -- and you have one exhausted person, running on fumes.</span><br />
<span style="font-family: "Trebuchet MS", sans-serif;"><br /></span>
<span style="font-family: "Trebuchet MS", sans-serif;">There are countless wrinkles and details I don't have time to get into -- take, for example, my sudden allergy to allopurinol, which led to a whole-body rash, fever, and night at the Sedona ER -- but suffice it to say that for week after week, it seemed that every day brought a new stress, a new concern, a new reason not to get enough sleep.</span><br />
<span style="font-family: "Trebuchet MS", sans-serif;"><br /></span>
<span style="font-family: "Trebuchet MS", sans-serif;">After we saw Dr. de Vos, we took a few days "off," as it were, to enjoy California. Marilyn grew up in L.A., and we met at UC Santa Cruz in 1977, and later lived in Berkeley. In our youth we traveled the state, from the shores of Big Sur to magnificent Yosemite to the redwood coast in the north. It was rejuvenating to reconnect to the good times in our past, to enjoy old memories, and to create new ones. </span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">Our experiences were simple. We enjoyed the cool, foggy ocean air, which was 45 degrees colder than the 115 degree temperature in Phoenix, which we had driven through on our way to L.A. Fog tends to blur the fireworks on July 4, but the spirit of celebration could not be dimmed. It was nice to be around people who were having a good time.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">We ate chile verde at a place in Santa Maria that we had eaten at 25 years ago and found that it was just as good today. Sometimes you can go home again.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">We saw San Francisco with a garland of fog, and the tops of the buildings, including the Transamerica pyramid, peeking into the sunny sky above. It's still a beautiful city, in a beautiful setting. Oakland, where we used to live also, shows new signs of life, and we stumbled upon a huge collection of food trucks gathered for a festival at the art museum.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">These things served as a reminder of what I'm fighting for: the simple gift of more days on this beautiful Earth, with the beautiful loved one with whom I have been so fortunate to share my life. </span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">Where there's a will, my friends, there's a way.</span>David Arensonhttp://www.blogger.com/profile/13876562687586184006noreply@blogger.com14tag:blogger.com,1999:blog-19102494.post-8609016182082130912013-06-02T16:43:00.000-07:002013-07-13T15:35:09.772-07:00April nightmare; May resolve <span style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: large;">When last I wrote</span>, things were looking pretty good. I had gotten a better-than-expected result from bendamustine and rituximab. I was planning on seeing expert Dr. Thomas Kipps at UC San Diego on April 25 to discuss maintenance ideas or what to do at relapse; perhaps one of the BTK inhibitor trials would be a possibility. </span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">And, of course, the day was getting tantalizingly close when I would be able to purchase new and better health insurance from the exchanges that will come online October 1, with the new insurance effective January 1, 2014. The new insurance, I hoped, would cover treatment at a major CLL center or two (such as UC San Diego) and would cover a stem cell transplant, if needed, which my current insurance does not.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">I had managed to play for time in somewhat difficult circumstances, and was content. Until one day, around the very end of March or beginning of April, I awoke with a crick in my back. </span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;"><span style="font-size: large;">Sometimes while sleeping</span> I can end up in a contorted position that causes back pain. When this happens, I try to be careful for a few days to lay in such a way as to help my back muscles. Usually the pain diminishes and the problem is solved.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">That's what I expected to happen here. The pain persisted, though. I had a routine appointment with Dr. Droll, my Phoenix-area oncologist, on April 5. I recall trying to get comfortable in bed the night before, and making a mental note that the pain was still there. Well, I had moved a couple of heavy boxes, against my better judgment; maybe I had put new strain on the muscles.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">The CBC for the appointment showed an unusual result: my platelets had dropped from the 150s to 89. This was not the first time this had happened. Such fluctuations often occurred during my BR chemo. Dr. Droll had been wondering if I had ITP, so this might have fit that pattern. As with so many anomalous blood results on so many tests over the years, it made sense to wait for the next test, to see if this was a one-time blip or the start of a pattern. </span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">There was also a mistake on the bloodwork. I had gone to Sonora Quest with a standing order that included LDH, or lactate dehydrogenase. The evidently dyslexic phlebotomist had input "HDL" into the computer, not LDH. So I was left with a count of cholesterol, not a reading of tissue breakdown, which is a marker of whether a cancer is growing.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;"><span style="font-size: large;">Now, for those who don't know</span>, a drop in platelets along with an elevation in LDH can be a sign of Richter's Transformation. I was aware of this, and had been on the lookout for any sign of Richter's since completing BR. Richter's can be a bit hard to disagnose, but other symptoms can include abdominal discomfort, fatigue, and sudden tumor growth.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">On all those counts, I felt fine. I could detect no tumor growth. </span><span style="font-family: "Trebuchet MS", sans-serif;"><span style="font-family: "Trebuchet MS", sans-serif;">My weight had not changed significantly. I had weighed 185 in December, which is pretty normal for me. I then settled into the low 190s, probably the result of letting myself go, diet-wise. I was not adverse to the occasional dessert involving Scotch and a shortbread cookie.</span></span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">A repeat CBC on April 15 showed platelets back up to 156, leading me to wonder if the one-time drop had just been an anomaly. The LDH was just mildly elevated at 247 -- two points over the reference range of 112-245. This was a little unusual, but I knew I had some abdominal nodes left over from BR, and I supposed I could be starting to relapse, and I figured I would discuss this with Dr. Kipps.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">Meanwhile, the pain in my back had become worse. I could no longer sleep on my right side, just the left. I went to see my primary care doctor, who ordered an X-ray. Sure enough, it showed a compressed disc in the L5, S2 region of the spine. <i>Ugh</i>, I thought, <i>this is a new and unwelcome health thing to deal with.</i> But it did, ostensibly, explain the pain, which was becoming so bad that I needed oxycodone to fall asleep.</span><br />
<span style="font-family: "Trebuchet MS", sans-serif;"></span><br />
<span style="font-family: "Trebuchet MS", sans-serif;"><span style="font-size: large;">Simultaneously, though, I developed rapid </span>weight gain. Between April 12 and 16 I gained 10 pounds. My belly began to look distended. This raised the Richter's warning flag. Every day it seemed to get bigger. On Saturday, April 22 I went to the Sedona ER. An X-ray came back showing what the ER doc took to be a great deal of ascites. This was followed by a CT scan, which confirmed, informally, what we had been suspecting. My abdomen was filled with a huge tumorous mass. The obvious guess was Richter's Transformation.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">This was not good news, but I am not one to bemoan my fate. I don't dwell on "why me?" Shit happens, and so does Richter's, to upwards of 10% of CLLers. Nobody knows why, but it does seem to come if you have had the disease for a long time, and it had been almost ten years since my diagnosis. Having abdominal nodes could be a factor, and I have had them for years. It's possible that the Epstein-Barr virus could contribute, and I had mononucleosis as a child, so EBV is still kicking around in my system somewhere. Maybe BR set up the environment for it; if you read the BR studies closely, you will note that there are always reports of Richter's on follow-up. </span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">I figured that if this was Richter's, there would be no better place to be than in Dr. Kipps' office three days later. The pain in my back was now severe and I was unable to sleep laying down. I had to sit up in a chair and rest my head on a pillow on the dining room table. The belly continued to grow. I looked like I was pregnant with twins. For those who are used to the slow pace of CLL, which can come in on little cat feet, this was a shocking experience. Richter's had arrived with all the aplomb of Godzilla tearing through Tokyo. </span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">Preparing for San Diego proved to have its comic moments. The night before we were to leave I suddenly realized that none of my pants would fit. Marilyn had to run to Wal-Mart at 1 a.m. to buy a selection of size 44 and 46 slacks and sweat pants. I managed to find a pair of pants that could be buttoned. Exhausted, we headed off the next day for the eight-hour drive to the sea.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">Ironically, we had originally planned to make a mini-vacation of our visit. We had booked a room near the beach in Encinitas, north of San Diego. I could see the waves in the distance through the window. Talk again about the best-laid plans . . . I was in no shape to walk the beach. Everything, even the simplest task, took extraordinary effort to accomplish, and the back pain was ferocious.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;"><span style="font-size: large;">My visit with Dr. Kipps is a blur</span> in my memory. He took one look at all bloated 216 pounds of me -- and it was a look of concern -- and suspected what was happening. The exact diagnosis would have to be confirmed by PET/CT scan and lymph node biopsy. It was clear to him that diagnosis and treatment could not wait. Among other things, he was worried that the tumor could be on the verge of causing some kind of kidney damage. </span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">It was established that treatment could not be done at UCSD because of insurance issues; I would return to Arizona the next day, and Dr. Kipps would contact Dr. Droll, which he did both by phone and fax. "Therapy in the next several days appears to be imperative," he concluded in the fax.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">The back pain I was experiencing, it turns out, was not the result of a compressed disc. It was the result of a tumor pressing against nerves in my spine, something I never would have guessed when, just a few weeks before, I had awoken with a crick in my back. </span><br />
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<i>This concludes Part 1. So as not to leave you in too much suspense, it did indeed turn out to be Richter's Transformation to aggressive Diffuse Large B Cell Lymphoma. CLL is now the least of my worries. The plan is to achieve the best remission possible, then move on to a stem cell transplant. I have undergone two rounds of treatment (OFAR) with what appears to be a good degree of success. After the first round, my weight dropped to 175. A CT scan before the second treatment showed a massive reduction in node size.</i><br />
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<i>Needless to say, my world has turned upside down. The new normal is considerably more risky and difficult than the old one. Despite all this, there is reason for hope. People <u>do</u> beat Richter's. In Part 2, I will share my treatment experiences, and discuss some of the challenges ahead. </i><br />
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<span style="font-family: "Trebuchet MS", sans-serif;"> </span>David Arensonhttp://www.blogger.com/profile/13876562687586184006noreply@blogger.com17tag:blogger.com,1999:blog-19102494.post-32174453281984012872013-03-17T13:59:00.000-07:002013-03-17T14:04:19.604-07:00Bendamustine and rituximab: the verdict<span style="font-family: "Trebuchet MS", sans-serif;">The results are in. After five cycles of bendamustine (Treanda) and rituximab, which ended in mid-November, I can report that the treatment worked better than I expected.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">As you may recall, I entered into it last July feeling a little desperate. My marrow was 90% impacted with CLL, my hemoglobin had dropped into the 7s, my platelets were dipping below 100, and thanks to swollen lymph nodes my abdomen looked like it was ready to give birth to three or four alien babies. You know, the big, ugly Sigourney-Weaver-attacking kind.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">When chemo began I did not know what to expect. I knew a CR (complete response) was out of the question. I just hoped I wouldn't get a HAR (half-assed response), one so ultimately poor and useless that it would render all the time, pain, and money not worth it. Especially in someone as heavily pretreated as myself, that kind of response was entirely possible. The disease tends to become more refractory to treatment as time goes on; you don't want a big, ugly failure to confirm your worst fears.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">Well, I've now had a follow-up bone marrow biopsy and CT scan. And the bone marrow result was one I did not expect: a CR in the bone marrow, courtesy of a 5-color flow cytometry.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">The CLL clones are there, just in numbers too few to analyze. The flow cytometry reveals "no specific diagnostic abnormality." Susupicious B cells comprise "approximately 0.1% of the total cellularity," or "too few to accurately assess clonality."</span><br />
<span style="font-family: "Trebuchet MS", sans-serif;"><br /></span>
<span style="font-family: "Trebuchet MS", sans-serif;">I have to admit that I just about fell out of my chair upon hearing the news. I was hoping, at best, for maybe 20% CLL in the marrow, a significant reduction, to be sure. But not one that pushes my CLL back to pre-diagnosis levels.</span><br />
<span style="font-family: "Trebuchet MS", sans-serif;"><br /></span>
<span style="font-family: "Trebuchet MS", sans-serif;">The CT scan of chest, abdomen and pelvis came out about as well as I might have hoped, but with less stellar results: Numerous swollen nodes are still there, especially in the retroperitoneum of the abdomen. The largest node is 6 x 4 cm, or about 2.4 x 1.6 inches. There are two others about that size, as well as numerous smaller ones.</span><br />
<span style="font-family: "Trebuchet MS", sans-serif;"><br /></span>
<span style="font-family: "Trebuchet MS", sans-serif;">What I am grateful for is that no huge cluster or mass of nodes was found; one can only wonder how bad things must have been at the start of chemo.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">The spleen was also enlarged, 10 x 6 x 17 cm. </span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">An added bonus on the CT was what wasn't found: "The liver, spleen, gallbladder, pancreas, adrenal glands, and kidneys are unremarkable. . . . Lungs are clear." In other words, no new wrinkles to challenge me on top of the CLL. </span><br />
<span style="font-family: "Trebuchet MS", sans-serif;"><br /></span>
<span style="font-family: "Trebuchet MS", sans-serif;">Four months after therapy my peripheral blood continues to look good, with an absolute lympohoctye count of 0.8, hemoglobin of 12.3, and platelets at 153.</span><br />
<span style="font-family: "Trebuchet MS", sans-serif;"><br /></span>
<span style="font-family: "Trebuchet MS", sans-serif;">Like Caesar's Gaul, CLL is divided into three parts: the marrow, the peripheral blood, and the nodes. It appears that chemo pretty much flushed it out of the first two. It remains a problem and a challenge in the nodes and spleen, which is what I would have expected given my history. And my B2M remains high at 5.1, which indicates the disease won't be staying out of those other two compartments forever.</span><br />
<span style="font-family: "Trebuchet MS", sans-serif;"><br /></span>
<span style="font-family: "Trebuchet MS", sans-serif;">So now, the challenge is maintaining -- or building upon -- the remission I have. I had a good visit with Dr. Thomas Kipps in San Diego in January. More on that in my next post, as well as some thoughts as to where to go from here. </span><br />
<span style="font-family: "Trebuchet MS", sans-serif;"><br /></span>
<span style="font-family: "Trebuchet MS", sans-serif;">But the headline is that the chemo was worth it and that the disease has been dealt a significant blow.</span><br />
<br />David Arensonhttp://www.blogger.com/profile/13876562687586184006noreply@blogger.com22tag:blogger.com,1999:blog-19102494.post-3497424089846713082013-01-03T11:17:00.000-07:002013-01-03T20:22:48.397-07:00Red cell rebound<span style="font-family: "Trebuchet MS",sans-serif;">I knew I was feeling more energetic recently when, after going up and down the stairs moving a dozen cardboard boxes, I didn't feel especially winded.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">Contrast this with not all that long ago, when just getting myself up the 14 steps was challenge enough. </span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">My latest CBC confirms what I suspected -- some six weeks after finishing Round 5 of bendamustine and rituximab, my red cells have recovered to the levels they were at before marrow impaction by CLL forced me into chemo.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">With a hemoglobin of 13.3, I feel like a new man, or at least not an old one. After living for more than a year with steadily declining red counts that put me in the 7s at one point, I realize now the subtle effect that growing anemia can have. At a hemoglobin of 11 I can feel almost normal, but lacking the energy edge of 13. At 9 I can function, but need a nap and am loathe to take on physical projects. At 7, well, it's a strain to climb the stairs.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">Platelets are at 134, about where they were when all this began. Absolute lymphocytes are at 1.8. Lymph nodes are significantly reduced and my weight is in the low 170s, where it has not been in two decades. I look a lot less pregnant -- sorry folks, no alien baby will be bursting forth this year.</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;"><br /></span>
<span style="font-family: "Trebuchet MS",sans-serif;">So, my initial verdict on BR is that it worked pretty well on me. Considering that I am ten years into this fight and have had multiple treatments, it was reassuring to see that I responded and responded well.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">I'll be paying a visit to CLL expert Dr. Thomas Kipps next week and will be curious about his take on my response, as well as the state of my abdominal lymph nodes via a thorough physical examination. </span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">I'll also ask him about possible maintenance treatments and/or treatments at relapse, including what may be available in clinical trials. One thing I am certain of is that I do not want the disease to get out of hand as it did in 2012; B-R has not been easy and there is no guarantee that I will respond well to it in the future. </span><br />
<span style="font-family: "Trebuchet MS",sans-serif;"><br /></span>
<span style="font-family: "Trebuchet MS",sans-serif;">My local oncologist is floating the idea of Campath, aka alemtuzumab, for maintenance. He's aware that it doesn't do much on nodes larger than 5 cm, which I may still have somewhere. And since bulky disease has always been my problem, I am a little loathe to go this direction.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">What's more, Campath is severely immunosuppressive, killing off T cells as well as B cells, and leaving some CLLers with all the immunity of your average AIDS patient. I have had pretty good quality of life when it comes to avoiding nasty infections, and I am not disposed to open myself up to juggling pneumonia, shingles, and who-knows-what-else.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">The extensive rash I wrote about in my last post has finally gone away with the help of a two-week course of oral dexamethasone. The biopsy came back as "hypersensitive dematitis" with no sign of CLL infiltration. Which is what I figured before the dermatologist punched holes in my skin.</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;"><br /></span>
<span style="font-family: "Trebuchet MS",sans-serif;">My oncologist thinks the rash might have been an allergy to Rituxan, perhaps less so an allergy to bendamustine. But no one knows for sure. </span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">So I have one last question for Dr. Kipps: Is it worth doing the last round of B-R, and doing it more than a month behind schedule? My tendency is to go for it, if this is my best shot at using it to nail down the best remission possible, perhaps without the R, just to stay on the safe side of any possible rash. </span><br />
<span style="font-family: "Trebuchet MS",sans-serif;"><br /></span>
<span style="font-family: "Trebuchet MS",sans-serif;">Meanwhile, I still have more boxes to move. It's the simple things in life that count and it's good to feel like a human being again.</span><br />
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David Arensonhttp://www.blogger.com/profile/13876562687586184006noreply@blogger.com3tag:blogger.com,1999:blog-19102494.post-22596540476608103162012-12-08T12:28:00.000-07:002012-12-08T12:28:28.872-07:00Not a rash decision<div style="font-family: "Trebuchet MS",sans-serif;">
Round six of my bendamustine and rituximab therapy has been delayed on account of a mysterious rash. </div>
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A few months ago I noticed a half dozen or so raised spots that I assumed were bug bites and thought nothing more about it. It's possible that they <i>were</i> bug bites, or it's possible that they were the start of an allergic response to one or both of the drugs I've been taking.</div>
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During the past month, and especially in the past couple of weeks, a rash both similar and different has spread. Some are raised, some are flat, and the flat ones are both circular and asymmetrical. I've got these in at least two dozen places, including the head, arms, chest, and legs. There's no particular pattern; like spring flowers, they're busting out all over.</div>
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<div style="font-family: "Trebuchet MS",sans-serif;">
On Wednesday I saw my dermatologist, who took two biopsies (results pending) and suggested that the rash was either a reaction to the chemotherpy or lymphocytic infiltration of the skin.</div>
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The latter is a new one on me, but apparently it can happen. On Friday I saw my oncologist, Dr. Droll, who said he doubts it's that. One reason is that my CLL is in pretty good remission after five rounds of B & R; the other is that the pattern of my rash does not look like lymphocytic infiltration that he has seen.</div>
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Dr. Droll thinks this could be a reaction to one of the drugs, probably Rituxan, or else a general immune dysfunction. Last year, when I was on Revlimid, I began to develop rashes with greater frequency in response to things that previously had not bothered me, such as experiencing the pollens in a new location or sweating in the Arizona heat. It seemed that Revlimid had amped up my immune response; my instinct tells me that immune "over-response" to something -- possibly Rituxan -- is what's going on here.</div>
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Both Dr. Droll and I shared the instinct that going forward with my sixth and final round of chemo next week would be a, um, rash decision, possibly adding fuel to the fire.</div>
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We're going to wait for the biopsy results. He also suggested that I might want to do the dreaded four-day pulsed dexamethasone regimen again, as that could tamp down any overboard immune response that might be happening. I'm probably going to give it a try, as the rash spots are only getting more numerous. </div>
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I'm treating them topically with triamcinolone (corticosteroid) cream. The dermatologist said this will relieve symptoms (some of the spots are itchy sometimes) although it may not make them go away. Which is another reason for trying the pulsed steroids, to try to shut the whole process down.</div>
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The long-term plan is to go ahead with round six of B & R when the rash is under control, and to consider doing it without the R.</div>
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<span style="font-family: "Trebuchet MS",sans-serif;">Meanwhile, round five was fairly uneventful, but surrounded by uncertainty about a mysterious jump in my blood calcium levels. Hypercalcemia can be scary, as it is often associated with end-stage cancer or a new cancer; luckily, the story has a happy ending and an unlikely culprit. I'll write about it soon.</span><br />
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<br /><br />David Arensonhttp://www.blogger.com/profile/13876562687586184006noreply@blogger.com4tag:blogger.com,1999:blog-19102494.post-5612977946862905002012-11-05T13:44:00.001-07:002012-11-05T13:46:15.601-07:00Bendamustine & rituximab, round four<span style="font-family: "Trebuchet MS",sans-serif;">My latest round of B-R ended almost three weeks ago and was pretty uneventful as these things go. Last week's blood work put my hemoglobin at 11.3, platelets at 205. My absolute lymphocyte count is 0.4, which the lab report describes as "low." </span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">The infusions were uneventful, and I had only mild nausea for one day. The most noticeable side effect was fatigue that lasted longer than usual. It dragged on for a couple of weeks this time; Dr. Droll says this is because the longer you do chemo, the more cumulative the effect.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">Lymph nodes continue to reduce. I now weigh 170, which I have not weighed since sometime in the 1980s. I've lost about 25 pounds since starting B-R. I think most of this can be attributed to loss of lymph node and associated weight. I don't expect to achieve complete clearance of the nodes with B-R -- unless I do 10 rounds, which I won't be; the protocol stops at six. But it will knock the nodes back to, let's say, 2006 levels. I've made an appointment with CLL expert Dr. Thomas Kipps in January to discuss ways to protect and extend the remission. </span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">Speaking of protecting and extending, tomorrow is election day. If worse comes to worse and I should need a stem cell transplant, which my insurance doesn't cover, there are two futures awaiting me.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">If Obama wins, I will be able to choose a plan under the health care exchanges set to come online about a year from now; I won't be rejected because of my pre-existing condition, and I should be able to find an affordable plan that covers transplants and is superior in many other ways to the one I am stuck with now.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">If Romney wins and repeals the Affordable Care Act, I guess I'll have to take the candidate's advice and go to the emergency room, where I can demand a stem cell transplant and then be laughed out the door.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">You know how I'm voting; I hope you'll vote with me for the the president, who represents the better angels of our nature. </span>David Arensonhttp://www.blogger.com/profile/13876562687586184006noreply@blogger.com1tag:blogger.com,1999:blog-19102494.post-67360386716300836882012-09-24T19:40:00.000-07:002012-10-04T19:21:04.351-07:00Bendamustine & rituximab, round three<span style="font-family: "Trebuchet MS",sans-serif;">My third go-around with bendamustine (Treanda) and rituximab is over, with some notably different reactions than before.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">The main event involved a 14-hour bout of diarrhea, which began the night of the second bendamustine infusion. I will spare you the details. But it is appropriate here that I say "Thank you" to the makers of Imodium, which I now regard as one of the Ten Wonders of the Modern World, ranking somewhere after the automobile and somewhere before air conditioning. </span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">(FYI, according to the chemo nurses, you can take an Imodium pill every two hours, despite what it says on the box. That schedule proved quite effective.) </span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">Otherwise, Round Three went off without the infusion reaction to Rituxan that characterized the first two rounds, probably because I was premedicated with enough Benadryl, Demerol and Solu-Medrol to bring down a rabid tiger.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">Round Three brought some noticeable reduction in abdominal lymph nodes, which I had been hoping to see as the treatments progressed. I am now one loop tighter on my belt. I still have a long way to go in the abdominal nodes department, but this is encouraging. Three more cycles of B&R await me; I am guessing that I won't get a complete remission but I may get as much of a remission as I could have reasonably hoped for.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">Blood counts remain decent, with hemoglobin in the 10s and platelets around 110. Dr. Droll says the numbers should go up as the treatment progresses. My absolute lymphocyte count remains laughably low. (UPDATE: As of my Oct. 1 CBC, ALC is 0.9, hemoglobin has risen to 11, and platelets are at 204, the highest they have been in years.)</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">The post-chemo fatigue and nausea that I wrote about following Round Two were there again, but in milder form. It's Monday, and the last infusion was Wednesday of last week, and I am feeling normal again, or as normal as I get.</span><br />
<br />David Arensonhttp://www.blogger.com/profile/13876562687586184006noreply@blogger.com1tag:blogger.com,1999:blog-19102494.post-49481148649999509992012-09-03T14:34:00.002-07:002012-09-03T14:34:49.870-07:00Endless war<span style="font-family: "Trebuchet MS",sans-serif;">Today is the ninth anniversary of <a href="http://clldiary.blogspot.com/2005/11/september-3-2003-diagnosis-day.html">my diagnosis</a> with chronic lymphocytic leukemia, after which I will enter my tenth year of fighting this thing. <br /><br />The date September 3 occupies the same place in my memory as September 11, November 22, and December 7. In other words, it is a date that lives in infamy.<br /><br />I have some random thoughts today, as I do every time September 3 rolls around.<br /><br />One is that I am living in what the late CLL expert Dr. Terry Hamblin would have regarded as my end times. People with my type of CLL (unmutated, 11q-deleted, at least up until recently) live about eight to twelve years after diagnosis, he once told me. He had hundreds, if not thousands, of case histories to back up that assertion.<br /><br />But he told me this back in 2006 or 2007, and fortunately a lot has changed in CLL very quickly. I have been able to take advantage of two new treatments, lenalidomide (Revlimid) and now bendamustine (Treanda). The horizon looks a little bright, what with the kinase inhibitor trials that seem to be keeping CLL in check, as well as the killer T-cell technology that is being developed to, just perhaps, put an end to the disease once and for all. There’s more stuff out there; I can’t keep track of it all. But I do believe that someday in the not-too-distant future, maybe in another nine years, CLL as we know it today will be a highly controllable beast. (And I have no doubt that within the lifetimes of some readers of this blog, it will basically become a curable condition.)<br /><br />I just have to get from here to there and beat Dr. Hamblin’s odds. There are ways to try to do this. One is to make the best decisions possible, which is never easy. I've made my choices, and unless there is an alternate universe somewhere with another me who chose a different course, there's no way of knowing if I have made the best choices. There is a reason why I keep this quote from Vaclav Havel on the right side of this page: "Hope is not the conviction that something will turn out well, but the
certainty that something makes sense, regardless of how it turns out." </span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">A second factor is the pace of research and development, the degree to which progress in treatment is made, both through dogged determination and strokes of good fortune. In this department, things are moving about as fast as can be hoped.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">A third factor is the ultimate one, in my view: Luck.<br /><br />For all the problems with our medical system, I am lucky to live in the United States, where most of the CLL research and clinical trials of import take place. I am not so lucky to be saddled with bad insurance, but there are ways to get past some of those limitations if one is willing to dig deep enough and be persistent enough. Still, the re-election of Barack Obama may have a direct impact on my life span. The survivability of the Affordable Care Act, which would allow me to purchase much better private insurance in 2014, is a personal thing to me. <br /><br />More than that, luck has a lot to do with how the disease progresses, what course it takes. We CLLers live forever with the prospect of a shoe dropping somewhere, bringing with it a new and unwelcome challenge. I’ve had my problems this past year, but the current bendamustine-rituximab treatments appear to be giving me a new lease on life, as it were. Where things will be with me in three, six, nine years, I cannot know. I do know that the disease rarely gets better the longer you have it; I also know that new treatments are changing the game.<br /><br />Playing the game is an inescapable fact of life for those with a chronic disease. After nine long years I feel like a veteran of what Dr. Hamblin once likened to a war of attrition. Another CLL expert, Dr. John Byrd, told me in 2006 that CLL is a long journey.<br /><br />May yours – and mine – be so long as to see the day when we can live our lives without it.</span>David Arensonhttp://www.blogger.com/profile/13876562687586184006noreply@blogger.com12tag:blogger.com,1999:blog-19102494.post-60487200921124380292012-08-29T16:28:00.001-07:002012-09-10T17:10:34.110-07:00Holy bendamustine, Batman! (B-R round two)<span style="font-family: "Trebuchet MS", sans-serif;">I have finished the second of my six bendamustine-rituximab treatments, and this time the regimen came with some "Kapow" and a little "Bam."</span><br />
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To guard against tumor lysis, my first treatment involved only two-thirds of the standard dose of bendamustine (aka Treanda); this time I had the full 100mg/m2. My reaction was significantly more intense than the easy-breezy first time around.</div>
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The bendamustine was administered last Tuesday and Wednesday. Tuesday also included the Rituxan, which brought forth infusion reactions unlike any I have had before. The ill effects of the bendamustine -- fatigue and low-level nausea -- didn't set in until Thursday night, and have only really abated today.</div>
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More on that later. First, there is good news to report. The higher dose has done a much more noticeable job on the nodes, almost returning my neck to its natural swanlike appearance, and reducing a large mass in the abdomen to a reasonable degree. I still have a long way to go with the nodes, but if this keeps up, I will have made significant progress by the time I'm through.</div>
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One question is how long the nodes will stay at their current size. Last time around, they began to bounce back in the week before my second treatment. By the time I sat down in the infusion chair, most of the progress that had been made thanks to the first round had been erased.</div>
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This is not a good sign, and it indicates how fast my disease is prone to grow. But my reaction to round two, with a much more noticeable node reduction than round one, makes me cautiously optimistic that the effort will hold this time. Which, fingers crossed, means round three should see an overall further reduction in the nodes.</div>
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I am hopeful that the cumulative effect of the treatments will largely shut down the CLL factory in the marrow as well as reducing it in the nodes, creating a smaller, more easily manageable disease.</div>
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<span style="font-size: large;">A FISH story </span></h3>
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For some time I have wondered if my disease has turned more aggressive, or whether it has reached a critical mass, like a snowball rolling downhill, gathering size until it gets so big that it is difficult to stop.</div>
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A first step was to get a new FISH test, which I did in April. Would there be a 17p deletion there, indicating more aggressive disease?</div>
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The results were a little surprising. My first FISH test, back in 2004, showed a "normal" karyotype, which meant the chromosomal damage was of a nature not probed for on the test. In 2006, the FISH came back positive for the 11q deletion on 24% of cells examined, not good news. 2007's FISH showed 11q in 36% of cells. 2008's FISH showed 11q on 53% of cells. In 2009, 11q was noted on 31% of cells examined. (Why the dip? Who knows? But it didn't change the basic picture: an 11q
deletion that appeared to have increased in the number of cells over
time. By the way, the deletion always showed up on one arm of the chromosome only, which was of some comfort, as it meant I still had some ATM function, ostensibly.)</div>
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2010 and 2011, the Revlimid years, were FISH-free as the disease was under control for most of the time. Then in April of this year came an interesting twist: the 11q was down to 8% and a new deletion, 13q, again on one arm of the chromosome, was found on 30% of cells examined.</div>
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That FISH test was from the peripheral blood. In July, I had a bone marrow biopsy, which showed 90% involvement by CLL. A FISH was performed on that sample. It showed no 11q deletion at all, and a 13q deletion on 42% of cells.</div>
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So, what does all this mean? It appears my 11q clones are in decline, which is good news. (Why that is, again, who knows? It appears to fly in the face of conventional wisdom. My hunch, which is a completely wild guess, is that my Revlimid treatments had something to do with it.)</div>
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The April FISH showed a double deletion (11q and 13q), which is not good news. And while 13q is considered the most benign of the deletions, there are a couple of flavors of 13q. One indicates more aggressive disease; the tests I had did not go beyond the basic probe, indicating a deletion of one arm of 13q14.3.</div>
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I don't think the handoff from 11q to 13q indicates an improvement in my disease. But this is about the best change I can hope for; it would seem to indicate that the disease is probably not more aggressive by nature than it was before.</div>
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So I am basically subscribing to the snowball theory, and only time will tell if I am right. Another point I am compelled to make: FISH tests are all well and good, but shy of showing a 17p deletion, the most important factor in deciding to treat the disease is your clinical condition.</div>
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<span style="font-size: large;">On the way from Calais</span></h3>
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The last time I recall feeling as nauseous as I did post-bendamustine was many years ago on a boat from France to England. This was in the pre-Chunnel days. I grew whiter and whiter as the white cliffs of Dover approached, barely managing to contain my nausea with each bumping wave.</div>
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The nausea that set in last Friday never got to the barfing point, but it was uncontrollable with ondansetron (Zofran) tablets, which worked less well than Pepto-Bismol. To keep my kidneys flushing the dead CLL cells through, I needed to be drinking lots of water, and water is the last thing a sensitive stomach can tolerate. If I never see another can of Blue Sky New Century Cola again, it will be too soon. Needless to say, food was also rather unwelcome; I managed to lose some noticeable weight since nothing was appealing, although my stomach eventually discovered that macaroni and cheese was tolerable.</div>
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The fatigue was also way out of the ordinary. I would sleep 14 hours, on and off, and wake up tired. Today, Wednesday, is the first day that feels normal, both in terms of fatigue and nausea.</div>
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Although it sometimes felt as if my hemoglobin had taken a hit -- benadamustine can lower hemoglobin temporarily in about 90% of cases -- it turned out that wasn't the case. Comparing some numbers from the day before I started the second round to six days after I finished it: hemoglobin 10.8 before, 10.5 after; platelets 147 before, 138 after; absolute neutrophils 4.9 before, 5.4 after (as in the first round, I had a Neulasta shot on the day after completing treatment). The only dramatic change was in absolute lymphoctye count: 13.6 before, 2.1 after. I don't think my ALC has ever been so low.<br />
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UPDATE: My blood work from two weeks after treatment showed signs of decline in hemoglobin (down to 9.3) and platelets (110). Absolute lymphocyte count was 1.4, a new record low. </div>
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<span style="font-size: large;">The rigors, minus the mortis</span></h3>
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Last Tuesday's plan was to infuse the rituximab, then the bendamustine. My reaction to rituximab, a drug I have had countless times, was surprising. I was given prophylactic Benadryl and Solu-Medrol and expected pretty smooth sailing. About 15 minutes in, my face turned red and I felt some shortness of breath. This eventually abated, thanks to stopping the treatment, accompanied by some oxygen.</div>
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About 10 minutes after the infusion resumed, I experienced what the chemo nurses called "the rigors." This symptom was appropriately named, as it involved rigorous uncontrollable shaking. You can wear out your thigh muscles fast when this
happens. Imagine having "the chills" but it's all coming from an
internal place, so it doesn't matter how many blankets they pile on you,
you still can't get warm. I think the rigors lasted about 15 or 20 minutes, during
which time I found myself wondering whether this was what the passengers
on the Titanic went through when they fell into the icy Atlantic. It finally abated, thanks to some more Solu-Medrol and Benadryl, as well as some Demerol. The Rituxan was stopped and I was given the bendamustine; reversing the order sometimes helps in such cases. Sure enough, when the Rituxan infusion was resumed later, it was completed without incident.</div>
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Why would someone who had managed to accommodate Rituxan for years with minor reactions, if any, suddenly develop these sort of symptoms? Again, who knows? With groundless abandon, I theorize that Revlimid changed something in my immune function. The Revlimid put an end to my autoimmune hemolytic anemia, but also led to a more hair-trigger allergy response in terms of skin rashes. Perhaps it also created a microenvironment less friendly to Rituxan.</div>
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My next sojourn in the chair is scheduled for mid-September. Keeping my eyes on the prize, I look forward to making more progress against the disease. But I'm not counting on an easy ride, and I will lay in a supply of macaroni and cheese, just in case.</div>
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<br />David Arensonhttp://www.blogger.com/profile/13876562687586184006noreply@blogger.com5tag:blogger.com,1999:blog-19102494.post-84490696541490691172012-08-01T11:56:00.000-07:002012-08-01T22:34:12.468-07:00Off to a good start with bendamustine and rituximab<div style="font-family: "Trebuchet MS",sans-serif;">
<span style="font-size: small;">I have just completed cycle one</span> of six in my bendamustine and rituximab treatment and things are going well. </div>
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These drugs are also known as Treanda and Rituxan. "Treanda" sounds like a girl's name from the <i>Maury</i> show, but to my mind it is cyclophosphamide's big brother, an alkalyting agent with a powerful kick. Rituxan, of course, is the ubiquitous anti-CD 20 antibody that we CLLers have been using alone and in combination with chemotherapy for several years.</div>
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I'm pleased to report that the treatment is showing the signs of effectiveness that I had hoped for, with only a few bumps in the road. The best news is that it cleaned out my bone marrow enough on the first
go-around that I am making more red blood cells and am getting out of
the anemia rut that came with marrow impaction. I entered treatment with a hemoglobin of 7.8 and less than a week later I'm at 11.4.<br />
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Not a lot has been written about patient experiences with BR in chronic lymphocytic leukemia, so I will describe mine in some detail. Remember that this is an anecdotal report, and that your mileage will vary; but perhaps I'll be able to give you some idea of what BR is like, and some of the things to consider and watch out for.</div>
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<span style="font-size: large;">My first thought is</span> that how you manage treatment is important. This should be a no-brainer, but people with no brains are dishing out chemotherapy every day, sometimes to the great disadvantage of the patient.</div>
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Going in with bulky disease and a bone marrow packed with CLL, my oncologist, Dr. Droll, felt it was best to start treatment at a lower dose and to do so in the hospital. I spent three nights at the lovely Banner Baywood, the name of which evokes a resort hotel (which no doubt would have been a lot cheaper), in Mesa, AZ. I was monitored for tumor lysis syndrome, which can occur when there is so much cell-kill that the kidneys are damaged. The hospital also kept track of my hemoglobin; bendamustine is known to reduce hemoglobin temporarily in about 90% of cases; it turned out that I needed four units of blood. </div>
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The photos I've posted show the room that was my home at Banner Baywood, which is a short walk from Dr. Droll's office. I was on the sixth floor cancer ward in a private room, since I was receiving chemotherapy and sharing a room could have, in theory, exposed the other patient to dangerous drugs The nurses could not have been nicer, and Marilyn stayed by my side the whole time, sleeping in a fold-out chair that reminded us of an uncomfortable cuchette that we once endured on an Italian train. I urged her to consider checking into a hotel, but love is stronger than a comfy mattress.<br />
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It helps to have a good caregiver with you, someone to watch you for infusion reactions that you may not be aware of, someone to keep an eye on what is being done, to get questions answered, to be there during the uncertain or scary times, and to raid the refrigerator at night when you want an egg salad sandwich.</div>
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<span style="font-size: large;">Tuesday, July 24th began with a call</span> from the hospital at 9:40 a.m.; a bed was ready. We pulled ourselves together and drove the two-and-a-half-hours to Mesa, a city east of Phoenix. We arrived at about 2:30 p.m. I was weighed, my height was recorded, and this was duly noted on the dry-erase board that serves as the information center in the hospital room. </div>
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I also had my vitals taken -- blood pressure, pulse, oxygen level, and temperature -- for the first of what seemed to be about six thousand times. One thing you learn quickly in the hospital is that you're not going to get a lot of uninterrupted sleep; there's always someone doing a vitals check, or drawing blood, or one of several other things that can leave you feeling very unrested. One morning between 6 a.m. and 9 a.m. we counted twelve visitors, including the chaplain, the "patient navigator" from the American Cancer Society, and, of course, the hospitalist. The hospitalist is the doctor who is in charge of the ward, although he had nothing to do with my treatment. I call him Dr. Ka-Ching, because I will no doubt owe him at least $500 for the 45 seconds he spent with me each day.<br />
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My first set of vitals put my blood pressure at 134/68, heart rate of 97, temperature of 36.8 Celsius (98.6), oxygen level of 95%. What's interesting is that once I started chemo these numbers immediately improved, and stayed improved, throughout my stay. My systolic pressure would typically be about 115, and the diastolic remained in the 60s and 70s. Oxygen level went up a tick, heart rate dropped into the 70s. <br />
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Dr. Droll came by and said he was lowering the bendamustine dose by one-third. Instead of 100 mg/m2, I received 65 mg/m2, which was modified by the hospital pharmacist to 125 mg per infusion. The doctor also said he wanted me to stop by the office on Friday for a Neulasta shot, which is a good precaution when using bendamustine. B can clobber the neutrophils, leaving the patient subject to all sorts of bad reactions that can put you in the ER.<br />
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To guard against tumor lysis, I was advised to continue on allopurinol (300 mg/day), which I had been taking for four days. (Please note that there can be some skin issues when allopurinol is used with bendamustine. I haven't had any problems, but it's something to watch for. According to an FDA warning letter to the drug's maker, Cephalon, "Allopurinol has also been used during the beginning of TREANDA therapy.
However, there may be an increased risk of severe skin toxicity when TREANDA and allopurinol are administered concomitantly.")<br />
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I was also advised to stay well hydrated, which would keep dead cells moving through the kidneys. I was put on a saline solution, dispensed at 150 mg per hour, with some variations in speed over the next few days, and my urine was monitored. I was asked to pee into a plastic urinal with numbers on the side, and the nurses duly recorded the volume to make sure that my output equaled my intake. Everything I drank was monitored as well. <br />
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Dr. Droll exited stage left, announcing that he was going on vacation, and that one of his partners would visit me each morning.<br />
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<span style="font-size: large;">Rituximab, the big unknown, was infused first.</span> I have lost track of how many infusions of Rituxan I have had since I first used it in 2004. I am guessing about two to three dozen, give or take a few. One of the big questions going in was whether R would work on me at all, as it had, over time, become less and less effective. But I had not had it in 2 1/2 years, and research shows that in the presence of bendamustine it can work in Rituxan-refractory patients. <br />
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<tr><td class="tr-caption" style="text-align: center;">I'm still waiting for the lobster.</td></tr>
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Premeds consisted of 25 mg of Benadryl and two Tylenol. No steroids were given, which I questioned, since in all previous instances I had been given 125 mg of hydrocortisone or Solu-Medrol. The chemo nurse said that steroids were in Dr. Droll's orders "if needed" and that at Banner Baywood it was routine practice not to give steroids as prophylaxis before infusing rituximab.<br />
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"What strange corner of Mesa have I stumbled onto?," I wondered. But I figured I'd go along with the program, when in Rome and all, having never had a really bad reaction to Rituxan. Sometimes during the first infusion, about 40 minutes in, I would get a flushed face or some tightness in the throat. A couple of times this led to a temporary halt in the infusion, and/or giving more steroids. Then things would calm down and be uneventful the rest of the way. <br />
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Sure enough, about 40 minutes in, I began to react. This involved profuse sweating and shortness of breath, and I do mean shortness of breath. My blood oxygen level dropped into the high 80s. Not since I almost drowned in a swimming pool as a child have I felt that close to being unable to breathe. It was scary. I was hooked up to oxygen and the nurse proceeded to go about getting some steroids in me. I was given 40 mg of Solu-Medrol, the maximum that Dr. Droll's orders indicated. I needed more, and this took a little while to arrange, since Dr. Droll's Partner had to be reached by phone to agree to exceed the dose set by Dr. Droll, which he did. Another 100 mg of Solu-Medrol was administered and it worked.<br />
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Suffice it to say that Dr. Droll and I are going to have a conversation about Rituxan premeds and that at least two chemo nurses at Banner Baywood are now aware that CLL patients ought to be given steroids as prophylaxis when Rituxan is used. <br />
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The good news is that Rituxan showed signs of working almost immediately. In the old days, when I used it as a single agent, there would be some tumor flare in my neck after a couple of hours. The area with the nodes would also turn a little red. The idea is that the body was responding to an area where there was now an antibody, cell-kill was ensuing, and this was part of the process by which the nodes were reduced. In later infusions, when I wasn't sure that Rituxan was working, this reaction would be absent. But sure enough, it was happening again, and I had not yet had bendamustine, so it was not the product of that drug's influence. Call it chance, call it luck, but it was a very good sign.<br />
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<span style="font-size: large;">Bendamustine was started at 12:47 a.m</span>. In the hospital they can give chemo 24/7, and they do. The Rituxan had taken forever, from 5:20 p.m. to 11:30 p.m. Premeds for the B consisted of 12 mg of dexamethasone and 24 mg of ondansetron (generic for Zofran, an anti-nausea drug), as well as 40 mg of Lovenox to prevent clotting.<br />
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The B was started at 10 ml/hour and was raised incrementally to 400 ml/hour, and it took an hour and a half to infuse. The chemo nurse kept track of the vein in my left arm into which all of this was pouring; I have never had a port, and I am evidently some sort of God when it comes to having good veins, but she wanted to make sure the vein did not blow, which can happen with rapid bendamustine infusions.<br />
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All went well. She may as well have been infusing me with water for all the reaction I had, which was no reaction at all. After the Rituxan it was anticlimactic, and I had had enough drama for one evening.<br />
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There was, however, to be no rest for the weary. I entered the hospital with a hemoglobin of 7.8 and Dr. Droll's orders called for a red blood cell transfusion if the hemoglobin was below 8. So I was given two units of blood, taking about three-and-a-half hours each.<br />
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The blood was irradiated, CMV negative, with leukocytes removed, so it was about as pure as it was possible to get. I had no infusion reactions and did finally manage to get some sleep, although the entire process was not finished until about 9:30 a.m. the next day.<br />
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I should note that these days, at least at Banner Baywood, the patient armband has a UPC code; nurses use a scanner on it that verifies who a drug is for (and no doubt adds it to the bill.) This also tells them if a drug is contraindicated with another that the patient has been given. A separate armband is used for blood products. When blood was transfused, two nurses would come in
and, in addition to the scan, repeat my name, date of birth, blood type, and
so on to verify that the right person was getting the right stuff. I
appreciated this attention to detail. There is enough to worry about
when doing chemo without having to worry that you're being given something by mistake. <br />
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<span style="font-size: large;">Day Two involved the second</span> and last bendamustine infusion as well as two more units of blood. All were uneventful in terms of infusion reactions.<br />
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The blood was ordered because my hemoglobin, which had been raised by 1.6 points thanks to the first two units, had again slipped below 8. Given that bendamustine takes a toll on hemoglobin in 89% of cases, it was not surprising that the number didn't hold. (My platelets were taking a hit as well, having been 127 upon admission and 71 on discharge. This drop occurs in 77%-86% of cases. Absolute neutrophils actually increased, which is something of an anomaly, from 1.82 to 2.42. Neutropenia is reported in 75%-86% of cases.) <br />
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Dr. Droll's Partner stopped by with another theory; perhaps I was being so well hydrated to avoid tumor lysis that it was causing the hemoglobin number to drop. It is true that if you want to increase your hemoglobin on a CBC, going into the test dehydrated will help. So he cut the flow rate of the saline solution to 60 ml/hour and said he wanted me to stay in the hospital one more day to monitor the situation. This prospect was not greeted with huzzahs by me or my loved one -- the chemo nurse was amused to learn that a sweet-looking lady can curse like a sailor -- but we understood the reasoning.<br />
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Sure enough, the next morning, my hemoglobin was 9.0 and I was a free man.<br />
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<span style="font-size: large;">I feel significantly better following the chemo.</span> That's the bottom line, after all. I have a great deal more energy, thanks in part to that 11.4 hemoglobin. I feel as if I have my life back; I can do things around the house again, run errands and not get winded, and so on. I'm not ready to run any marathons, but things feel more normal than they have in some time. Perhaps the CLL was taking an overall toll on my system that helped account for my low energy on top of the low hemoglobin; putting it in check has done more in a short time than I expected. It is interesting that my heart rate dropped so dramatically -- from the 90s to the 70s -- after therapy.<br />
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My major challenges are the lymph nodes and bone marrow. There are five more cycles to go and I am optimistic that I will have a significant reduction in nodes. Odds are very good that I am among the bulkier CLL patients ever to use BR. My nodes tend to be smaller, but they fuse together in clumps when left unchecked. Treatment then breaks them up. Already the neck nodes are noticeably and significantly reduced. The masses that were under my arms are now individual, smaller nodes, though still significant. My abdomen has slimmed down and I look a mere seven months pregnant instead of nine. I have lost about five pounds, much of which is probably lymph node weight. <br />
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My white blood count, which is really the least of my problems, dropped from 71.7 to 12.1 on discharge and 8.2 four days after discharge. Platelets have begun to recover as well, now at 112, up from 71 at discharge. The Neulasta bumped absolute neutrophils up to 4.7. The hemoglobin, which was 9.0 after the last two units of blood, is at 11.4 four days later. That is the highest it has been since last December and I am surprised, in a good way, at the rapid turnaround.<br />
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I managed to avoid tumor lysis syndrome as well. I picked up a few things from the nurses on what they look for. In extreme cases they see signs of mental confusion, but I was no more confused than I usually am. They also pay attention to creatinine levels, uric acid, and electrolytes such as potassium, magnesium, calcium, and phosphorous. At one point my magnesium and phosphorous were a little high and calcium a little low, but nothing to worry about. The other numbers remained within the normal reference range. <br />
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One thing I noticed on the tests that has been little-discussed is a rise in blood glucose levels. Back when I used to do RCD -- rituximab, cyclophosphamide, and dexamethasone -- to combat autoimmune hemolytic anemia, my glucose levels would rise. My oncologist at the time, Dr. Meng, said this was mainly due to the cyclophosphamide, which can cause hyperglycemia (although I am sure the steroids contributed as well).<br />
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Diabetes is not an issue for me and in a fasting state I test out at normal glucose levels. I can eat a turkey sandwich before a blood test and still have a glucose level that's not far over 100. But in the hospital, where I was not fasting, the glucose was coming back at 229, then 185, then 175. (Four days later it was 109 in a fasting state.) Given that bendamustine is an alkalyting agent like cyclophosphamide, those of you with blood sugar issues may want to keep an eye on things if you opt for BR.<br />
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<span style="font-size: large;">I have found a few good resources on BR.</span> There aren't many out there for a therapy that is becoming increasingly common. The best I have found on dosage and side effects is this <a href="http://www.pbm.va.gov/Clinical%20Guidance/Drug%20Monographs/Bendamustine%20Monograph.doc">document</a> from the Veteran's Administration. The ever-helpful BC Cancer Agency also has a good <a href="http://www.bccancer.bc.ca/NR/rdonlyres/752EF5BF-BD03-40CD-AA7C-AA172B5697EB/52225/FinalBendamustineSAPinterimmonograph_14Jul2011.pdf">PDF</a> on bendamustine. The best paper on BR is <i>Bendamustine Combined With Rituximab in Patients With Relapsed and/or Refractory Chronic Lymphocytic Leukemia: A Multicenter Phase II Trial of the German Chronic Lymphocytic Leukemia Study Group</i>. The abstract can be found <a href="http://www.ncbi.nlm.nih.gov/pubmed/21844497">here</a>. If you want more than the abstract, send me a note at clldiary at yahoo dot com. I'm not always swift about replies but I promise to get back to you.<br />
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I am looking forward to my next treatment, which will be in Dr. Droll's office, with full-strength bendamustine. I'll report on what happens then, and whether I experience any delayed reactions to the treatment I have already had. Some patients have reported nausea, fevers, fatigue, rashes, constipation, diarrhea, and severe neutropenia. Some of this is a matter of luck (or lack of it) and I think age may also have something to do with how easily the medicine goes down. It's easier to handle heavy-duty chemo at 55 than at 75. Whatever your age, of course, the important thing is that it works. So far, so good.<br />
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<br />David Arensonhttp://www.blogger.com/profile/13876562687586184006noreply@blogger.com9tag:blogger.com,1999:blog-19102494.post-7220703338486142952012-07-22T14:31:00.001-07:002012-07-23T17:59:30.797-07:00It's chemo time<div style="font-family: "Trebuchet MS",sans-serif;">
Treatment starts Tuesday. I have decided to go with bendamustine and rituximab (aka Treanda and Rituxan), the first round of which will be given in the hospital so I can be monitored for tumor lysis.</div>
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As readers of this blog know, I have been looking for a kinase inhibitor trial for some time. A series of events out of my control has kept me out of trials, and my clinical condition now demands something bigger and stronger.</div>
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I was invited into the CAL-101 plus ofatumumab trial at UCLA last August, only to be told that there was a mistake by the company that organizes the trials and that the slot didn't actually exist. Had this worked out, it would have been ideal, since I was still at Stage 2 with ample hemoglobin and platelets. It would probably have been a seamless transition from the lenalidomide (Revlimid) I was on, and it probably would have forestalled the situation I now find myself in. At last count, hemoglobin was 7.9, platelets were 96, and the lymph nodes are bigger than ever. My spleen is 6 cm below the costal margin and the liver is, in the words of my oncologist, Dr. Droll, "pronounced."</div>
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In March, I was invited into the ABT-199 trial at the University of Arizona Cancer Center. I went there for the testing that is required before entering the trial, only to find out that there was now a problem between the drug company, Abbott, and UA. Since then I have been able to piece together some of the story; it appears that a failure to do something right at UA lead to the suspension of recruitment there. Which left me with nothing other than the promise that I would have first crack when a slot opened in the AVL-292 trial, in which UA was also participating.</div>
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The slot for AVL-292 finally opened, and I was faced with a difficult fact: Hemoglobin of 9.0 is required for admission, and while mine had been a steady 9.2 for months, it dropped to 8.5 and now 7.9. So I wasn't going to get in the trial regardless.</div>
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<b>The cart before the horse</b></h4>
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This all dragged on much longer than anticipated, and as it did my hemoglobin began to head south. It became apparent to me that between my failing marrow and disease bulk, using a kinase inhibitor would be like trying to stop a house from burning down with a garden hose. Even if it addressed the nodes to some extent, it was almost assuredly not going to address the marrow, or do so with much depth and rapidity, and that is probably the worst problem I have at the moment.</div>
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I went in for a bone marrow biopsy on Thursday; I haven't heard the official results, but the person who did the BMB -- and all she does is BMBs, day in and day out -- said my marrow was "packed." I'm not surprised. </div>
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(For BMB fans, of which there are none, it is worth noting that they put me under for the procedure with propofol, as well as using lidocaine on my hip. This is the way to go as far as I'm concerned. I woke up a few minutes early and felt her digging the needle around in my hip bone; it was much more pleasant being knocked out.)</div>
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Ultimately, it makes a lot more sense to deliver as big a blow as I can to the disease now, and then follow up with a trial, probably a kinase inhibitor, as maintenance afterward. I might also consider using lenalidomide as maintenance; perhaps at a low dose I could tolerate it, and with less disease burden it might not be as overreactive in terms of tumor flare as it proved to be last November.</div>
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<b>The choice</b></h4>
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Basically, there are two choices for Big Chemo these days: FCR or BR. In my case, given the low hemoglobin and the fact that I had autoimmune hemolytic anemia from 2007 to 2010, FCR is just too risky. While the CR can moderate fludarabine's ability to trigger AIHA, it is still a risk, and one that someone with a hemoglobin of 7.9 should not take.</div>
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Bendamustine is newish, at least in practice in the U.S., and is supposed to be less myelosuppressive than FCR. Reading anecdotal case histories, one finds that most patients get through it with good results. There are exceptions, usually when neutrophils crash, triggering bad reactions, which is why using Neulasta during treatment makes some sense.</div>
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The most reputable paper on BR comes from the German CLL Study Group, which examined the treatment in a tough group of relapsed and refractory patients. The abstract is available <a href="http://www.ncbi.nlm.nih.gov/pubmed/21844497">here</a>. For those who don't know, bendamustine was developed in East Germany. After reunification, it attracted the interest of researchers and drug companies. An alkalyting agent like cyclophosphamide, it also seems to have properties similar to purine analogues like fludarabine.</div>
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The full paper from the German group is worth reading. Bendamustine can work on those who are fludarabine-refractory, with 45.5% responding. It can also work on those who have had rituximab, and I have had plenty in years past. Of seven patients who had previously received rituximab, five responded with a partial remission.</div>
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A disturbing fact involves Richter's Transformation. Four of 78 patients were diagnosed with Richter's Transformation after the end of treatment. The authors imply this was unrelated to treatment, but I'm not so sure. Richter's can be set up by profound immunosuppression resulting from treatment; just because it doesn't show up until later doesn't mean treatment had nothing to do with it.</div>
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The bottom line is that all therapy comes with risks; kinase inhibitors are not risk-free, as Chaya Venkat makes clear in a recent <a href="http://updates.clltopics.org/4606-pci-32765-ibrutinib-what-we-know-thus-far">report</a> at CLL Topics Updates. </div>
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What I can expect</h4>
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Based on the German data and my clinical situation, I am hoping for a partial remission that significantly reduces the nodes and clears out the marrow to a great extent. I am not anticipating a CR, despite the optimistic words of Dr. Daruka Mahadevan at UA, who said BR would "clean me out."</div>
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This is why maintenance should be initiated soon after I complete BR in December. I need to keep the disease in check through some means; if there has been a lesson for me in my experience since November, it is "don't let up."</div>
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<span style="font-family: "Trebuchet MS",sans-serif;">I will report on BR in some detail as I experience it; little has been written, even anecdotally, about patient experiences with the drug, and it is here to stay as a major player in CLL. </span><br />
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I'll be doing the first round in the hospital so I can be monitored 24/7 for tumor lysis. In someone with my disease bulk, so many CLL cells could die so quickly that my kidneys might be at risk. Both Dr. Mahadevan and Dr. Droll thought this was a good idea, and I can't argue. As much as I don't like the hospital, I like my kidneys. I also expect that Dr. Droll will go with a lower-than-usual dose of bendamustine in the beginning, another way to guard against potential problems.</div>
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<span style="font-family: "Trebuchet MS",sans-serif;">And so the next chapter begins in my CLL Diary. I am looking forward to the treatment, which I hope will restore some of the quality of life that I have lost. I had seven years of relatively easy CLL; when things head south, one is reminded of how difficult (and, yes, how potentially deadly) this disease can be.</span><br />
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<br />David Arensonhttp://www.blogger.com/profile/13876562687586184006noreply@blogger.com7tag:blogger.com,1999:blog-19102494.post-22931533586624418342012-07-01T15:35:00.002-07:002012-07-01T15:38:38.304-07:00Thank you, Mr. Roberts<div style="font-family: "Trebuchet MS",sans-serif;">
Word is out now that Chief Justice John Roberts <a href="http://www.cbsnews.com/8301-3460_162-57464549/roberts-switched-views-to-uphold-health-care-law/">switched his vote</a> before Thursday's U.S. Supreme Court ruling on the Affordable Care Act.</div>
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And for that, I say thank you, Mr. Chief Justice. I could, perhaps, owe him my life.</div>
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I have been counting the months until 2014, when I should be able to purchase decent insurance through one of the newly-established exchanges among states. The new law requires that they take me despite my preexisting condition -- chronic lymphocytic leukemia -- and that premiums be capped to that I can actually afford, like most middle-income people, to pay. If coverage is anything like it is in the current and temporary PCP -- the Pre-existing Condition Program that the ACA set up for adults who have been without insurance for six months -- it should allow me a much wider network, including out-of-state expert centers. And, unlike my existing insurance, it would probably provide for a stem cell transplant, should that day ever come.</div>
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This will allow me to get away from Merciless Healthcare Group, which was set up in Arizona as a state-backed plan for small businesses. Over the years what was once a limited HMO that took care of its members has become a penny-pinching HMO with ever-higher deductibles and co-insurance and an ever-shrinking network.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDglvPHoGYtRe83WpKxPQfYv2oxGSN7V6JpHd4f49nGIq93Q-TO-RM4gaMw-KRrKEyvO40Xaw7wL7qvmYWkno8mZ6BJySmwBQCmZGEtrHH5M2rmbNwQBZP3ukK22q7nwUeqHEI_Q/s1600/roberts.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDglvPHoGYtRe83WpKxPQfYv2oxGSN7V6JpHd4f49nGIq93Q-TO-RM4gaMw-KRrKEyvO40Xaw7wL7qvmYWkno8mZ6BJySmwBQCmZGEtrHH5M2rmbNwQBZP3ukK22q7nwUeqHEI_Q/s320/roberts.jpg" width="289" /></a>For example, the emergency room where I was diagnosed with CLL in 2003 is about a half-mile from my home. It is no longer contracted with my insurer, which no longer has a relationship with Northern Arizona Healthcare, the largest provider in the region. Today, to go to a contracted hospital I have to drive an hour and a half to Prescott, and that goes for getting CT scans or outpatient infusions as well. If you live in my county, you can't even buy into my insurance any more. I am what they called "grandfathered" in. (And, of course, no other insurer will touch me because of my CLL, at least until the ACA takes full effect in 2014.)</div>
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I suppose I should consider myself lucky to have insurance at all. Reading online forums, I have seen more than one CLLer describe attempts to deal with the disease without insurance. Chlorambucil may be affordable but it is hardly the standard of care these days. Neither is drinking a lot of green tea.</div>
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The whole question of the Affordable Care Act can be an emotional one for both sides. I plead guilty here. For me it may make a huge difference in quality of care, which could mean life and death. On principle, I also think a country that constantly touts itself as the greatest in the world should be able to provide real access to health care for everyone. American "exceptionalism" should not include an exceptional inability to create a workable medical system.</div>
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There was an anti-ACA sign held by one of the protesters outside the Supreme Court building while everyone waited for Thursday's decision. It read something to the effect of: "Obamacare: Thank you for paying for my poor life decisions."</div>
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CLL is not a product of poor life decisions, and neither are most cancers and chronic diseases. Sometimes shit happens. Let these people walk a mile in the shoes of the uninsured, or underinsured. Let them learn what financial and emotional strain truly are. Now that the election approaches, some Republicans talk of "repeal <i>and replace</i>," but in all the years they held power, at least post-Nixon, they never made an effort to address such matters as preexisting conditions. Given their continued lurch toward the hardline right, one expects they never will. </div>
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<span style="font-family: "Trebuchet MS",sans-serif;">Please join me in voting Democratic this Fall, from the state level to the federal, to insure that the law is implemented as it should be.</span> <span style="font-family: "Trebuchet MS",sans-serif;">The ACA may be flawed in some ways, and it may need tweaking as it goes along, but is is a giant step for our country, and for many of our fellow CLLers, as well as other cancer patients.</span>David Arensonhttp://www.blogger.com/profile/13876562687586184006noreply@blogger.com2tag:blogger.com,1999:blog-19102494.post-9024753635895047302012-06-23T14:45:00.000-07:002012-06-23T14:45:32.881-07:00Black thumbs, passing arms, and high fevers<div style="font-family: "Trebuchet MS",sans-serif;">
Time for an update, as the saga drags on. </div>
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I have a new theory, which I'll call Dave's Black Thumb. It goes like this: If there is a doctor in Arizona that I like, they will eventually leave their practice and probably the state.</div>
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The first to go, in 2006, was Dr. Susan Partyka, known as "Dr. Chopin" in the blog. In January of this year it was Dr. Lesley Meng ("Dr. Belle.") </div>
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Which brings us to the present. Earlier this year, when Dr. Meng left, I found a new oncologist, but I also found another doctor to consult with who was conducting some interesting clinical trials of kinase inhibitors. This was Dr. Daruka Mahadevan at the University of Arizona Cancer Center in Tucson. (I paid out of pocket for to see him because my insurer, Merciless Healthcare Group, doesn't cover either of the state's preeminent cancer centers, the other being Mayo Clinic in Scottsdale.) Dr. Mahadevan was UA's CLL guy, and we hit it off immediately. He's smart, an honest arbiter of treatments, showed a willingness to fight for his patients, and was worth the $500. And now he, too, has flown the coop and departed the state for points unknown.</div>
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This means the reset button has been pressed, and now I need to see a new doctor in Tucson, who will be the new investigator for the one remaining trial (AVL-292) they expect to open "in a few more weeks." If I had a quarter for every time I have been told "a few more weeks" I really could buy a cup of coffee. (My last post went into problems with the trial that would have been the first choice, ABT-199.) </div>
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I can't wait forever</h4>
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Keep in mind that my disease has become much worse since last November and that I needed treatment in January, really. My hemoglobin has plateaued at about 9.2, which is just enough to get me around but not enough to do any meaningful physical activity. I think twice before walking up the stairs, for example. I tire easily and need to sleep more than usual. </div>
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My new local onc, who I think I'm going to call "Dr. Droll" because he has a dry sense of humor, has kept me going during this trial search with huge doses of pulsed steroids, which is a stop-gap of limited usefulness, not any kind of solution. This involves taking 40 mg of dexamethasone for four days every ten days, ostensibly. (I do it about every three weeks, when I feel baseballs forming under my
arms again.) This regimen is used on myeloma patients. When I saw him recently and mentioned how much I hated the steroid regimen, his comment was "They don't clamor for it." </div>
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The platelets dropped to 85 at one point but thanks to the steroids have been hanging around 120. The lymph nodes have
gotten worse than ever (though surprisingly my spleen is almost petite).
Left unchecked for awhile, the nodes clump together in masses under my
arms and in my abdomen. The steroids knock them back some, then they
bounce back after a few weeks. It's clear that my marrow is impacted and
that the nodes need attention.</div>
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Dr. Mahadevan's suggestion for a conventional treatment was bendamustine-rituximab. Dr. Droll has the same point of view. Mahadevan said he "wouldn't give me fludarabine with a 10-foot-pole" because of my history of AIHA. I am not overenthused about bendamustine, but I do see the logic and it is less myelosuppressive than fludarabine. Either can lead to such lovely conditions as Richter's Transformation, and I have a lot of deep abdominal nodes.</div>
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It is exactly because the kinase inhibitors can do an excellent job of shrinking the nodes with much less toxicity that I have held on this long to search for a trial. But how long is it safe to continue waiting to get into one while taking enough steroids to revive the dead?</div>
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Which brings us to the Hail Mary pass I have thrown, which may result in some good news, and which may not, and I won't know until mid-July. I'm going somewhere a little further afield than Tucson, and I'll see what happens there.</div>
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But the window on this is closing; no trial soon = bendamustine-rituximab.</div>
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104 degrees</h4>
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And I don't mean the weather. I have just finished a week, most of it spent in bed, with fevers that ranged from 99 to 104. Besides fever, the main symptom was exhaustion. My lymph nodes did not swell up beyond their already swollen point, which is usually what happens when I have a cold or flu. In a CLLer with limited immunity a fever of 104 is not a good sign. Marilyn wrapped me in an electric blanket and stuffed me under the comforter and we agreed that if it was not down within an hour, it was off to the ER. But it dropped, and I stayed home.</div>
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The good news is I got over It, whatever It was. The fever began while I was continuing on prophylactic meds for the steroids, although I was off the steroids, but the Bactrim, Augmentin, Fluconazole, and Acyclovir did not prevent It nor cure It. My own immune system overcame It, which is a very good sign.</div>
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And that's where things stand. I'll update you in a month.</div>
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<br />David Arensonhttp://www.blogger.com/profile/13876562687586184006noreply@blogger.com3tag:blogger.com,1999:blog-19102494.post-25912105047366524632012-05-06T16:51:00.000-07:002012-05-06T16:51:28.939-07:00Hurry up and wait<span style="font-family: "Trebuchet MS",sans-serif;">Those of us with chronic lymphocytic leukemia are familiar with the concept of "watch and wait," which means being a patient patient while your disease take its course. This can involve a certain degree of dis-ease (pun intended) as you and your doctor lurk about, waiting for just the right moment to begin treatment, should that become necessary. </span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">Of late I feel like I've been experiencing something called "hurry up and wait," which is what you do when your disease definitely needs treatment but you are waiting for the best treatment option to make itself available, which is supposed to happen Any Day Now.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">"Watch and wait" drives Type A personalities a little bit crazy, which isn't really a problem for me. "Hurry up and wait," on the other hand, can be a bit of a challenge. </span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">In my case, since the end of the Revlimid era last November, the CLL has taken a turn for the worse, compounded by departing doctors, insurance runarounds, and potential clinical trials that have proven to be trials in more ways than one. I've written about some of this, and am here to provide a little update now.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">The good news is that Any Day Now there should be an opening in a kinase inhibitor trial with my name on it. I've been waiting on two such choices for a while. </span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">The first, which I'll call Trial One, almost came to fruition six weeks ago. In fact, I was all dressed up for extensive testing for a trial slot, only to arrive and find I had no place to go. Seems an "adverse event" in the trial of said inhibitor had just raised a big red flag at corporate headquarters and further patient accrual was being put off. All this happened in real time as I sat in my hotel, or in the Vietnamese restaurant adjacent to my hotel. Eventually I was sent home with the knowledge that while Trial One was probably out for the forseeable future, there was a Trial Two that would have an opening in another month, give or take.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">And, so, here I wait at home, far from pho, disappointed but cautiously optimistic that I might make it into the second trial, in which no adverse events have been reported to date, at least that I know of.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">You could argue that I am lucky the adverse event in Trial One didn't happen to me. It was an unexpected case of severe tumor lysis, apparently, which means massive, immediate die-off of leukemia cells that, uncontrolled, can damage the kidneys. Trials are called trials for a reason, and as much as we like to think of ourselves as intelligent, forward-thinking patients, we are also in fact risk-taking lab rats when we sign on the dotted line. So maybe I dodged a bullet by not making it into Trial One, which would not have been so disappointing had the principal investigator not been so genuinely enthusiastic about its potential to help me.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">Now, I could go into names of drugs and names of doctors here, but what I have heard is second-hand, and I'm not in the business of reporting such things as absolute fact. This is a blog, not journalism, and there is a huge difference between the two that I still hold somewhat sacred, having worked in the news business back when double-checking the facts counted for something.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;"><b>To keep my CLL at bay while waiting for trials, I have been taking huge pulsed doses of steroids every few weeks.</b> My new local hem/onc calls it the "myeloma dose" -- 40 mg of dexamethasone daily for four days. The advantage is that it does reduce the nodes temporarily, and it has bettered my platelets a bit (they're now at 101) while perhaps also keeping my hemoglobin steady in the low 9s, which isn't so awful once you get used to it. Plus the steroids leave your system in under six days, and the prophylactic meds (antibiotics, antivirals, antifungals) also leave quickly, meaning that you can be ready to qualify for a clinical trial without a long delay.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">Since 2007, I've had a fair amount of experience with steroids, about which I plan to write at some point soon. I think they're a good but problematic stop-gap, and nothing more. Steroids are a potentially useful component in any "hurry up and wait" strategy, but they're no way to live.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">The late Dr. Terry Hamblin once pointed out that in end-stage cases he would prescribe steroids once a month just to keep the patient going, and I can see how, when all else fails, it beats the alternative. </span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">Fortunately, we now have more alternatives, such as the kinase inhibitors, as well as Revlimid for those who can tolerate it, not to mention the supercharged T cells being studied at such places as the University of Pennsylvania.</span><br />
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<b>Which brings us to the real game to win here.</b> I call it "slow down and wait." By that I mean, allow science to outpace your CLL by just enough that it can save your life. I feel like I'm cutting it close on this one, but there really is no other choice, except to go marching off to the Relapsed-and-Refractory Factory and await the end.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">Call me
irresponsible, accuse me of "dithering" in the face of my own unplanned
obsolescence, but I am not comfortable with following a conventional
wisdom that can change from one day, or week, or month, to the next. In
CLL, action can mean progress, but it can also mean the <i>illusion of
progress</i>. Doing something just to do something may not always be the most rational course. So I often find myself taking my chances with inaction.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">"Slow
down and wait" involves a certain amount of powerlessness, of accepting
things you probably cannot change, among them the possibility that Fate
might throw something at you, for good or ill. By making wise (or just
plain lucky) treatment choices you might be able to control the disease
long enough to buy more time, but there are no guarantees, since the
disease can always take a turn for the worse at a whim. As to the pace
of scientific progress -- and the availability of its fruits in your
locale -- that is all luck, pure and simple. </span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">So far,
I've been fortunate that science has done more since my diagnosis in
2003 than I, or perhaps anyone else, might have expected. My disease
behaved decently until last fall, and now has settled into a new
plateau, worse than it was but not getting worse, at least yet.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">And Any
Day Now, well, I hope to be trying a new treatment that might just
control this thing. So I'm hurrying up and waiting in order to slow down
and wait some more. Welcome to CLL.</span><span style="font-family: "Trebuchet MS",sans-serif;"> </span>David Arensonhttp://www.blogger.com/profile/13876562687586184006noreply@blogger.com13tag:blogger.com,1999:blog-19102494.post-17132073740977255432012-02-20T12:43:00.000-07:002012-02-20T12:43:25.398-07:00Revlimid, in retrospect<div style="font-family: "Trebuchet MS",sans-serif;">
Now that my year-and-a-half experiment with Revlimid -- aka lenalidomide -- is likely done for good, I think it's appropriate to sum up what I've learned. </div>
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Blogs tend to blurt out information that gets disconnected after awhile; my training as a feature writer tells me to sum up and provide context. For those chronic lymphocytic leukemia patients considering Revlimid, I hope my anecdotal experience might be of some use, which is why I am writing this.</div>
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I say "anecdotal" with all the usual warnings, as in YMMV -- Your Mileage May Vary -- and with this drug, it probably will. </div>
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Pills are small and easy to take, but this one is not, on so many levels. For a little capsule that's supposed to be an "immunomodulator," it can easily provide more grinding fits and challenges than regular chemo. In CLL, lenalidomide comes with a wide
degree of patient tolerance issues. One of them ultimately derailed the drug for me, but until it did, this stuff was almost golden.</div>
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Today, it is being eclipsed by the buzz about kinase inhibitors with license-plate names: CAL-101, ABT-199, AVL-292, PCI-32765, and so on. These drugs are in trials with promising results; while they may end up being a first choice over lenalidomide for many patients, in some cases they may not. Revlimid is here to stay for CLL, and it is a useful option to have. I used it from March 2010 until November 2011, with three months off starting in March 2011.</div>
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<b>Revlimid modulates the immune system. Somehow. And in people with weakened immunity, such as CLL, this can do a couple of great things.</b> One, it can cut down on infections, sinus and otherwise. In fact, it has been <a href="http://www.medicaldaily.com/newsprint/20101216/4681/extremely-low-doses-of-the-drug-lenalidomide-can-stimulate-the-body%E2%80%99s-immune-cell-protein-factorie.htm">suggested</a> that low doses of lenalidomide can be given to older people -- not necessarily CLLers, just older people who tend to get sicker easier -- as a means of keeping the immune system more functional. I have been fortunate in my CLL career not to have been especially infection-prone, despite my immunoglobulins being in the tank for nine years. While on Revlimid I was infection free -- not even a sinus minus clogging up my yap.</div>
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<b>Revlimid normalized my blood counts, and it has done this for a lot of people.</b> My absolute lymphocyte count wasn't too high to start with, as most of my disease is located in my 11q-deleted lymph nodes. But at one point my CBC became picture-perfect, frame-able even. You couldn't tell by the numbers that anything was wrong.</div>
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<b>And this is a really big deal </b><b>-- while using Revlimid, my very nasty, recurring case of autoimmune hemolytic anemia resolved.</b> From the moment that the AIHA was diagnosed in March 2007, until Revlimid put a stop to it, I was bedeviled by serious hemolysis and treatments that began to fail, one after another, until I was left getting pretty heavy chemo (Rituxan, dexamethasone, and cyclophosphamide) as frequently as every three months. And there was some question about how long that could continue before a splenectomy became a necessity.</div>
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Dr. Asher Chanan-Khan, probably the country's leading lenalidomide-CLL researcher, told me in an e-mail before I started the drug that he had seen two actively hemolyzing patients -- hemolysis means your macrophages are eating your own red blood cells, which they will continue to do until you have none left and die -- whose hemolysis resolved while on Revlimid.<br />
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My own experience has led me to prosthelytize on these pages more than once, and so let me shout it out again for all my AIHA fellow-sufferers to hear: Please, please, consider Revlimid, especially if you are finding that the usual treatments (steroids, rituximab) are failing. If it does for you what it did for me, you'll have enough red blood cells to do some serious dancing in the streets. After a year of Revlimid, my hemoglobin was back up to 15.1 -- the exact number it was at on the day of my CLL diagnosis in 2003. I turned Coombs negative and remain so at this moment.</div>
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<b>Revlimid also reduced my lymph nodes to a noticeable degree.</b> I would say -- and I am guessing, since some nodes are more palpable than others -- by up to about half. In a nodey guy like me, that is great news. It took a long time. But it was slow and steady. And in CLL, slow and steady is often all you need to win the race, or at least to stay where you need to be when in competition with the growth of the disease.</div>
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<b>Now, here's a real Revlimd success story</b>. I have a friend with 11q-deleted CLL who went into a Revlimid clinical trial as frontline treatment. His lymphocyte count had reached a half-million (that's not a typo). In the trial, patients are upped from 5 mg daily to 25 mg daily over time, if they can tolerate it. And my lucky friend proved able to tolerate it, and to get the benefit from the maximum dosage. </div>
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By the end of his two-year stint, his counts had normalized, what nodes were left were barely palpable, his hemoglobin was high, and a bone marrow biopsy showed improvement. Platelets were a bit low, but you can't have everything, and he's been told they should recover. He had found himself an excellent way to start out controlling his CLL without burning any bridges. He has had treatment, but not chemotherapy, which sets up disease resistance. From all indications, he can go on to do any other treatment out there, or take advantage of a new treatment that comes along, and he can expect it to work as well on him as if he had never been treated. (And, of course, he can always do more Revlimid at relapse.)</div>
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<b>That is great news in the Second Chance department, which is so important in CLL, and which cannot be understated.</b> Preserving a second chance is what I was trying to do with single-agent Rituxan back in the days before Revlimid. That turned out not to work. Once you've done single-agent Rituxan, you have diminished your response to future treatments. It's not a free ride. But since Revlimid is an immunomodulator and works on totally different principles from chemotherapy, it does not appear to set up disease resistance. (Not that it won't make changes in the immune system, and only time will tell if there's something important about it that researchers and patients have been missing so far.) But if I were starting out and needing treatment, I would seriously consider Revlimid for the Second Chance reason, as well as for its potential to do the job in the blood, nodes, and marrow that needs to be done.</div>
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And if I had been through the chemo mill, and was pretty much out of Second, Third, and Fourth chances, I would also look into Revlimid. There are some CLLers out there who have been kept alive for years now with daily doses of Revlimid. Fate has allowed them to tolerate it, and it works as well on the nasty 17p-deleted CLL clones that are left after the Chemo Wars as on the "nice" ones you tend to find more of at the start. For these people, Revlimid truly is golden. </div>
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<b>Dosages are tricky. </b>Not everyone can tolerate 25 mg. Celgene, the drug's maker, has recommended that as a routine matter, CLLers not be given more than 10 mg daily. Some patients are coasting along at 5 mg, in maintenance. Some can tolerate 10, some higher. Some can't tolerate it at all.</div>
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In my case, doses as low as 5 mg have caused problems. I'll get into that in a minute. Suffice it to say that the higher the dose you can take, the more the drug will probably be able to do for you. Finding that right dose, and watching out for symptoms that could indicate drug intolerance, requires a great deal of patience. It helps to have a doctor who has used the drug in CLLers, or at least in those for whom it was originally intended, patients with MDS. You need to be aware of your body and on top of symptoms if you are going to experiment with it, and let's face it -- in CLL, Revlimid is still experimental.</div>
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<b>Revlimid can also make you feel kind of out of it. </b>Before I get into more serious tolerance issues, one thing my friend and I both noticed, and that some others have noticed, too, is that lenalidomide can bring a certain dullness to your life. I wouldn't say fatigue, necessarily. But this drug is the enemy of multi-tasking. It can lead to a lack of focus or sharpness. You can operate heavy machinery, you can go to work, you can do all the things you normally do, but somehow you do these things slower, or somewhat more detached, or in a somewhat foggy world involving less concentration. This is not a good-time, party drug. When Marilyn and I flew back East for my step-mom's big 70th birthday bash, I stopped taking Revlimid a few days before. I knew that if I were off of it, I'd be enjoying the party and making conversation. If I were on it, I'd be sitting in a corner trying to remember who so-and-so was from a distance. Suffice it to say that lenalidomide is no help with libido, either. While not everyone reports these sorts of symptoms, It's ongoing use could lead to a somewhat lower quality of life in some respects. That's not enough to make it not a choice, but it's potentially part of the experience (and for some it does get better over time.)</div>
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<b>Revlimid can lead to serious clotting issues. </b>This is one of those things that Celgene is very up-front about, and that the nurses who dispense the drug are always reminding you of.<br />
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By now, if you've read <i>CLL Diary</i>, you know that clotting was my problem, and that this shifted the risk-reward scale in favor of abandoning lenalidomide. To recap, I have a family history of clotting troubles. My mother died of a pulmonary embolism at 57, just two years older than I am now. Her older son -- my older half-brother -- suffered several strokes, one of which took his life this past July at the age of 66. I saw him become bedridden and incontinent, barely able to move one hand, hardly able to swallow, eventually surviving through a stomach plug. I saw him decline, both physically and mentally. One night, a few weeks before he died, in a moment of frightening clarity, he shouted something from the hospital bed that had been set up in his living room: "What a miserable existence!"</div>
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It is possible to live with CLL and have good quality of life. In the QOL department, there are many worse conditions to have, not all of them cancerous. Staring my brother's fate in the face, I was ever reminded that worse things could await me if I were not careful.</div>
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I had two transient ischemic attacks, aka mini-strokes, while on lenalidomide, and then a third incident that probably qualified as something of the same. The first incident came about four months in, while I was on 10 mg daily, and involved about ten minutes of aphasia, or language difficulty. It resolved completely, and I ignorantly chalked it up to "chemo brain" and put it out of my mind. </div>
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The second attack came some some months later, after things had been going so well that my oncologist gave me the go-ahead to up the dose to 15 mg daily. We wanted to go in and get at those nodes. After a week or so, the same language difficulty appeared again, also for about ten minutes. This time I went to see the doc, and she put two and two together, and clotting issues took center stage.</div>
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<b>Which is why, like my lucky friend, who underwent a supervised trial in which Coumadin was required prophylaxis, I would not advise anyone to go on Revlimid without also going on Coumadin, or warfarin.</b> Even if you don't think you have a clotting problem, it is wise to guard against it. If it is good enough for Dr. Chanan-Khan's patients, it should be good enough for your doctor's, too. Like any prophylactic drug we CLLers take -- such as allopurinol, acyclovir, or Bactrim -- it is designed to guard against a problem occurring. And at a low dose, such as 2 mg daily, it should not present a problem for most people. It is insane not to do it, IMHO.</div>
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The third incident occurred in September of last year, and came and went over the course of a week. By that time, I was on higher doses of warfarin, which were not improving my clotting time much at all, and lower doses of Revlimid, such as 5 mg three times a week. I felt a transient numbness on the left side of my mouth, sort of the way you feel after you've been to the dentist and the Novocaine has started to wear off. Simultaneously, I also felt this numbness in my left hand. This resolved after about 15 minutes, but it came and went for short periods during the following week.</div>
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Finally, of course, there is the story of my lenalidomide gotterdammerung and the abscessed lymph node, catalogued a few posts back complete with messy photos. Despite a year-and-a-half of being on the drug (and sometimes off of it), resuming it at 5 mg just four days in a row caused such unholy tumor flare as to land me in the hospital.<br />
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<b>Which leads me to a final point: Revlimid can do unanticipated things to the immune system.</b> In my case, it appeared to goose it up over time. There was a three-month period, starting in March 2011, when I was off the drug. I was, in part, expecting to get a slot in a kinase inhibitor trial, which did not pan out, and I needed to be "drug free" for 28 days before starting the trial.<br />
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Just before resuming Revlimid after this hiatus, I came down with a case of hives. This was unusual, since my allergies don't usually take that form. It resolved with Benadryl (speaking of Zombie drugs) and I went on to restart Revlimid at a general course of 5 mg three days a week. Over the course of the last summer, I was constantly getting hives, several times a week. Move me to a spot with a new allergen, and it would start. Let me get a little sweaty in Arizona in the summer -- which is impossible not to do -- and the the hives would come again. It was all easily controlled; in fact I began taking Allegra every other day just to keep it away. But something in my immune reaction was more hair-trigger, way more prone to act quickly than it had been in the past.<br />
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My theory -- and, again, this is anecdotal guesswork -- is that Revlimid, which had rewritten my immune system in some good ways, also rewrote it in some more dangerous ones. A recent paper by Dr. Chanan-Khan and others discusses mechanism of action at some length, and basically points out that lenalidomide works best when there are lots of NK and T-cells present. (The latter, little marvels, also surveil against squamous cell skin cancer, another problem I've had, and something common to CLLers; Revlimid appears to have kept a lid on those, too.)<br />
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The paper, <i>Tumor flare reaction associated with lenalidomide treatment in patients with chronic lymphocytic leukemia predicts clinical response</i>, is worth reading if you're thinking of taking the lenalidomide leap. It appeared in the May 15, 2011 issue of <i>Cancer</i>, which is published by the American Cancer Society. Now, here is where I teach you to fish. Most journals that usually charge for articles will provide one free for the personal use of a patient if you just write and ask. In this case, contact canceredoff at cancer.org. <br />
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<b>Tumor flare, the paper explains, predicts response in Revlimid. There is a two-thirds chance that you will encounter it</b>. From the very beginning, tumor flare was always a challenge for me. It came on big when I first started the drug, then remained at a lower but tolerable level during treatment as the ongoing battle with the nodes was engaged. What happened at the end with the abscess was one for the record books. Again, just a guess, but I wonder if the Revlimid had created in me a condition by which my immune system overreacted when the Revlimid itself was re-introduced at a 5 mg sustained dose, higher than I had been taking for some time. <br />
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Talk about ironic.<span style="color: black;"> In many ways, I responded very well to Revlimid, perhaps a little too well. It created too much fire to play with.</span></div>
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But it got me through a rough patch when I needed it, and it saved my ass in 2010 and much of 2011, getting me in a bumpy fashion to the great hope of 2012, kinase inhibitors.</div>
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So, thank you Celgene. And if you, fellow patient, are in the right position to tolerate it, Revlimid could be an important option for treatment. Just consider that it may not be easy, and do expect the unexpected.<br />
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<i>(A final note: readers will recall that I began my Revlimid regimen in 2010 along with infusions of ofatumumab, aka Arzerra. The Arzerra was stopped after September's dose as the Revlimid appeared to be doing most of the work; I was on (and off) Revlimid for another eleven months after the Arzerra ended, so I do not think it clouds the story much. The one thing it may have done is mitigate the tumor flare I experienced at the beginning; perhaps it also served to keep the immune-goosing effects of the Revlimid somewhat in check.)</i></div>
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<br />David Arensonhttp://www.blogger.com/profile/13876562687586184006noreply@blogger.com7tag:blogger.com,1999:blog-19102494.post-29790606958926332682012-02-08T09:45:00.001-07:002012-02-09T09:37:26.699-07:00Some good news . . .<div style="font-family: "Trebuchet MS",sans-serif;">
It looks like things may be working out for me after all, both in terms of doctors and treatments. After enduring the perfect storm of departing doctors, booming disease, and insurance headaches described in recent posts, there may indeed be calm in the eye of the hurricane. One might even say that change can be good, even though the circumstances leading to it have been just about as bad as I could imagine.</div>
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But I have learned not to count my chickens until they're in the house bawking, so the fewer details I go into now the better. In about another month, if all goes as I hope, I may have some good news to report here. In the meantime, I'll just shut up and deal with pressing matters at hand. Thank you all for your love and support and advice.</div>
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Part of the CLL journey is luck. . . . Luck in terms of the disease, luck in terms of its responsiveness to treatment, but also luck with being there at the right time when the right person or thing comes along. You may be less lucky in one area than another, but what counts is, somehow, that you muddle on through and also create opportunities for luck. </div>
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Even in the darkest hour, do not stop trying, and do not be afraid to shoot for "yes" when only "no" seems possible. When your life is at stake, there are no excuses for not going "all in" to find opportunities, even if it seems you don't have a lot to go "all in" with. You've got yourself, and you've got your loved ones, and that is everything. If you don't think you're worth the fight, or that they're worth the fight, then you have bigger problems than CLL. </div>
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I'm in my ninth year of dealing with chronic lymphocytic leukemia. I've changed my mind about some things over time, but two things seem as true to me today as when I started: One, deal with your emotional baggage going in, or start working at it then and don't stop until you have reached a clear place where you can get your game on and fight most effectively. Two, never panic. Do not let fear dictate rash action, no matter how pressing the need for action may seem. </div>
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I'm going to add a third bit of advice now: Don't be afraid to put your eggs in more than one basket (I must have chicken on the brain today). Cast around, Look everywhere. Opportunity comes to those who seek it, and my guess is that success will ultimately come to those who are willing to give up everything (including time and money) for it.</div>
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And please keep in mind that you do need a good doctor, or good doctors, to help make things happen. You can only go so far alone, and there is a big difference between feeling that you are carrying your doctor, or that your doctor is carrying you.</div>
<br />David Arensonhttp://www.blogger.com/profile/13876562687586184006noreply@blogger.com12tag:blogger.com,1999:blog-19102494.post-55025441818080482382012-01-31T16:18:00.000-07:002012-01-31T16:20:18.095-07:00The Onco Wars<span style="font-family: "Trebuchet MS",sans-serif;">Imagine two oncologists starting a practice, then imagine the same two oncologists having a falling out two years later. Welcome to the Onco Wars, raging now at the office where I have been receiving care for my chronic lymphocytic leukemia.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">I'll call them Dr. Belle and Dr. Tower. You can think of them as Godzilla vs. Megalon, with all the attendant fire-breathing and foot-stomping that entails. </span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">On January 23, Dr. Belle, my doctor, wrote a letter to her patients:</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">"It is with sadness and a heavy heart that I announce that, due to unforeseen circumstances, I will no longer be able to attend to you as your physician. This letter is to advise you that I will not provide professional medical services to you after January 30, 2012. Your current condition requires follow up and I encourage you to find a new physician promptly to continue this care . . . I suggest you contact your insurance plan representative for assistance in locating a new hematologist/oncologist to assume your care . . ."</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKMZrTA1DUOf7ggmEcp22mva1EQEBgPaWmiqFC1svw_uXOf_AjX87wRFzHtXY2TlFF7NcE3KaJrZUSC3XN25DAE-rOeLlhSmL1j3ZHTiyxuxD7uM2IXRg4qOiyobU6SmrOb4nQmg/s1600/godzilla+megalon.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKMZrTA1DUOf7ggmEcp22mva1EQEBgPaWmiqFC1svw_uXOf_AjX87wRFzHtXY2TlFF7NcE3KaJrZUSC3XN25DAE-rOeLlhSmL1j3ZHTiyxuxD7uM2IXRg4qOiyobU6SmrOb4nQmg/s320/godzilla+megalon.jpg" width="227" /></a><span style="font-family: "Trebuchet MS",sans-serif;">And on January 27, Dr. Tower wrote to Dr. Belle's patients:</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">"Dr. Belle has recently informed us, and sent a letter to you, stating that she will be leaving the practice effective 1/30/12. Let me assure you that our office still remains committed to serving your needs and assisting in your care. I understand that Dr. Belle's departure may be upsetting to you, but I assure you that I am more than willing and able to assume your care, and would in fact be honored to do so . . ."</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">There is no doubt an interesting back-story here, which I don't imagine I will ever know. For me and for Dr. Belle's other patients, the big news is that we don't have a doctor anymore. Dr. Tower wants us to stay, but I hear through the grapevine that a number are choosing to go.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">For me, all this comes at the worst possible time. With a lymphocyte count of about 260,000, hemoglobin of 9.4, and platelets finally having dropped to a Stage 4-level 85, the need for treatment is staring me squarely in the face, if not also socking me squarely in the jaw. </span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">I have spun the wheel of fortune and picked a name from the measly list my health plan offers. I'll be seeing the new name soon, and hopefully I'll like this person enough to make them my new onc. Meanwhile, I won't rule out seeing Dr. Tower. But since insurance won't cover treatment at that practice, it may be time to cut the cord and go. Especially since it has been pretty much cut for me. </span>
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<span style="font-family: "Trebuchet MS",sans-serif;">Ouch.</span>David Arensonhttp://www.blogger.com/profile/13876562687586184006noreply@blogger.com4tag:blogger.com,1999:blog-19102494.post-44147282870990302772012-01-21T14:52:00.000-07:002012-01-21T15:15:51.189-07:00White bagging, or the seventh circle of health insurance Hell<span style="font-family: "Trebuchet MS",sans-serif;">Let's say you're a patient with a low income who qualifies for help from a drug company. That drug company is willing to deliver the drug, free of charge, to an infusion center near you.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">Great, right? </span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">And let's say your insurance is contracted with Scottsdale Chemo Hut. (Sure, it would be nice to get the infusion done at your oncologist's office, but your insurance won't cover treatment there, even though it will cover office visits. That is the sixth circle of Hell, which has more circles than Saturn <a href="http://www.universetoday.com/38097/how-many-rings-does-saturn-have/">has rings</a> when it comes to health insurance issues.)</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">So let's say you are getting everything set up with Chemo Hut, and in the process you speak to the pharmacy manager. And you are told this: Chemo Hut does not accept drugs directly from drug companies. The drug can arrive in an armored vehicle, in a suitcase chained to the wrist of the president of the company, and they'll still refuse to accept it.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">And why is this? Because Chemo Hut cannot bill for it. If they use their own supplier, they can make money. Increasingly, more hospitals and infusion centers are refusing to administer free drugs that their patients qualify for. This is because they are upset about a trend known as "white bagging." </span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">Under <a href="http://acccbuzz.wordpress.com/2010/09/29/white-bagging-of-oncology-drugs-growing-trend-heightened-concerns-2/">white bagging</a>, insurance plans use their own specialty pharmacies to supply drugs at a cheaper rate than those purchased through the hospital supply chain. By some estimates, this now accounts for some 25% of infusions. Complimentary drugs for the less financially fortunate are collateral damage in this tug of war between insurers, who want to contain costs, and hospitals, which want to maximize profits.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">Hospitals also complain about the inconvenience of having to store these drugs separately and write things like "for David Arenson only" on the outside of the box.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">FYI, there is also something called "brown bagging," in which the drug is delivered to the patient, who totes it in along with their lunch. Maybe I can see that one being a problem. Chemo Hut may not want to be responsible for infusing you with ofatumumab you bought off a guy in a truck down the block.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">Still, for patients who need chemotherapy and who cannot otherwise afford it, Chemo Hut and other hospitals and centers are making no exceptions, and this makes life difficult, not to mention a little more absurd than it already is. </span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">In my case, Chemo Hut will infuse the drug if it is ordered through their supplier; our insurance company does not work with specialty pharmacies, and it has approved the drug under my medical benefit, which means I have to pay 20% coinsurance. Or, we estimate, upwards of $20,000 by the time all is said and done. </span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">Well, lucky me, Chemo Hut also has a financial assistance program. A patient may qualify for a reduction in the bill of up to 100%. I say "may" and I use the term guardedly, because a patient may also not qualify, and be stuck with angry collection agencies and dings on their credit if they are unable to pay. The coinsurance the patient owes must now be written off as a loss. And while the insurance company will pay 80% at a negotiated rate, there is probably not a huge amount of profit there. So how much money is Chemo Hut actually making when all is said and done?</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">Chemo Hut could have administered free drug and still earned money on the costs of infusion, which is not chump change. But that would have been too easy. I know from running a business that sometimes you sell something and make a lot of money, and sometimes you sell something and make a little, but that you need both kinds of sales to stay profitable. (Not to mention the moral issues involved, but we're talking the health care system here, so that may not apply.)</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">There is one alternative, perhaps. One might ask the insurance company to approve infusion of the drug in the oncologist's office after all. The oncologist doesn't have a problem with white bagging because the oncologist actually cares about the patient. The oncologist, BTW, would like to be "in network" with the insurance and is willing to negotiate a fair price.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">All of this would save the insurance company from having to pay huge sums of money for an expensive drug that can be gotten for free. Compared to the costs of the drug, paying the cost of administration is a substantial savings.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;"> The savings would be, as they say on Vulcan, logical. This is Earth, though, specifically the United States. The insurance company (and Chemo Hut) would rather create a ridiculous financial morass that benefits no one, including the patient.</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;"></span>David Arensonhttp://www.blogger.com/profile/13876562687586184006noreply@blogger.com4tag:blogger.com,1999:blog-19102494.post-16419077017028820552012-01-15T13:54:00.000-07:002012-01-15T13:59:16.565-07:00Quack, quack<span style="font-family: "Trebuchet MS",sans-serif;">Just a little update. Marilyn (She Who Battles Insurance) and I are working on getting our ducks in a row. I have an appointment in early February with a doctor who is managing some clinical trials of Btk inhibitors. And in the meantime we are working on getting O+HDMP set up as a fallback.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">"O" stands for "ofatumumab," aka Arzerra. Apparently it is a strange and unusual beast. We're working with one of the largest hospitals (where the infusion would take place) in one of the largest metropolitan areas (Phoenix) in the country, and ain't nobody never asked for none of that fancy 'tumumab stuff before. The inventory control manager of the hospital pharmacy is trying to figure out what it is and how to get hold of it.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIkB_hczP6d0-kK4BLJM-oQ92tmyOebFvPV0zDlK8hlWmTNGIexxBgdK7L4Ax08oHXwb9-iTolz1F2BsPzngx45ZGrSAJS0CTNA5JwmerJlQebLbmDRagjvkr0d1qKabRpvoT1HA/s1600/ducks.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="133" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIkB_hczP6d0-kK4BLJM-oQ92tmyOebFvPV0zDlK8hlWmTNGIexxBgdK7L4Ax08oHXwb9-iTolz1F2BsPzngx45ZGrSAJS0CTNA5JwmerJlQebLbmDRagjvkr0d1qKabRpvoT1HA/s200/ducks.jpg" width="200" /></a><span style="font-family: "Trebuchet MS",sans-serif;">Of course, all of this
would be much easier if I could just have the infusion at my
oncologist's office. But she's out of network, even though insurance
will pay for me to see her. They just won't pay her to treat me. And
this is why my brain is turning to mush, which is an unexpected side effect not of CLL, but of having American health insurance.</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;"> </span><span style="font-family: "Trebuchet MS",sans-serif;"> </span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">Surprisingly, it appears that insurance will approve ofatumumab -- under my medical benefit, not my pharmacy benefit. Medical benefit means it has to be "injected at the hospital," and I will owe 20% coinsurance. Pharmacy benefit means it's a drug with a $35 co-pay. Near as we can tell, I am going to be on the hook for something like $17,000 in coinsurance if I can't get some help from somewhere. Which means I can't afford it, unless I'd like to consider going bankrupt. </span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">I am reminded of the late Dr. Terry Hamblin's many posts in which he discussed the merits of one drug or another, compared often negligible differences in progression-free survival, and concluded that the beaucoup expensive drug was not worth the cost. O+HDMP could turn into R+HDMP, I suppose, or chlorambucil plus prednisone, which costs almost nothing.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">Meanwhile, maybe a trial will work out. . . . The big question is how a Btk inhibitor might affect marrow function. My hemoglobin is down to 9.6, and slowly trending south. Welcome to Stage 3.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">What I do know is that some kind of treatment has to come soon, and February looks like the month. I'll report back when I'm finally sitting in the chair somewhere, having something happen.</span>David Arensonhttp://www.blogger.com/profile/13876562687586184006noreply@blogger.com6