The cancer survivors park

Marilyn and I ran across a sculpture garden devoted to cancer survivors in a park near downtown Santa Rosa, California. It's properly known as the Richard and Annette Bloch Cancer Survivors Plaza at Fremont Park, and it was an unexpected pleasure and an inspirational place.

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 24 of these 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.

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.

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. 

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.

 

"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

I'm finally not feeling like crap

Greetings from the cancer ward 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.

As I mentioned 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.

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.

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.

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 Star-Spangled Banner, which is good for about two minutes. I sang what I could remember of Warren Zevon's Werewolves of London. The refrain that was supposed to be ah-hoo, werewolves of London became OWWW! werewolves of London, belted out at the top of my lungs. 

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 Godzilla to CLL's Bambi. I still have CLL, but it's basically irrelevant.

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.

The chemo in question 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.

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.

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.

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 The Journal of Irreproducible Results. 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.

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.

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.

The "O" in R-EPOCH stands for oncovin, aka vincristine. I had bad peripheral neuropathy 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.

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.

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. 

R-EPCH is done every three weeks, in the hospital, as the etoposide and adriamycin are infused together over a 96-hour period. Just about the only side-effect so far has been hair loss -- I expect to be bald in a few more weeks. I weigh 160 now and my belly, while still pronounced, is much less pregnant-looking. It's mushy, not taut with tumors. 

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.

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 (!).

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.

So this is my new normal. 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. 

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. 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 everything -- 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.

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.

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. 

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.

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.

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.

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. 

Where there's a will, my friends, there's a way.

April nightmare; May resolve

When last I wrote, 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. 

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.

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.

Sometimes while sleeping 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.

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.

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.

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.

Now, for those who don't know, 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.

On all those counts, I felt fine. I could detect no tumor growth. 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.

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.

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. Ugh, I thought, this is a new and unwelcome health thing to deal with. But it did, ostensibly, explain the pain, which was becoming so bad that I needed oxycodone to fall asleep.

Simultaneously, though, I developed rapid 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.

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. 

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.  

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.

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.

My visit with Dr. Kipps is a blur 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. 

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.

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.

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.

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 do beat Richter's. In Part 2, I will share my treatment experiences, and discuss some of the challenges ahead. 

 

Bendamustine and rituximab: the verdict

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.

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.

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.

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.

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."

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.

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.

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.

The spleen was also enlarged, 10 x 6 x 17 cm. 

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.

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.

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.

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. 

But the headline is that the chemo was worth it and that the disease has been dealt a significant blow.

Red cell rebound

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.

Contrast this with not all that long ago, when just getting myself up the 14 steps was challenge enough.

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.

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.

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.

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.

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. 

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. 

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.

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.

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.

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. 

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. 

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.

Not a rash decision

Round six of my bendamustine and rituximab therapy has been delayed on account of a mysterious rash. 

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 were 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.

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.

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.

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.

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.

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.

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. 

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.

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.

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.

Bendamustine & rituximab, round four

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." 

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.

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.

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.

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.

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.

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.

Bendamustine & rituximab, round three

My third go-around with bendamustine (Treanda) and rituximab is over, with some notably different reactions than before.

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.  

(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.)

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.

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.

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.)

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.

Endless war

Today is the ninth anniversary of my diagnosis with chronic lymphocytic leukemia, after which I will enter my tenth year of fighting this thing.

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.

I have some random thoughts today, as I do every time September 3 rolls around.

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.

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.)

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." 

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.

A third factor is the ultimate one, in my view: Luck.

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.

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.

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.

May yours – and mine – be so long as to see the day when we can live our lives without it.

Holy bendamustine, Batman! (B-R round two)

I have finished the second of my six bendamustine-rituximab treatments, and this time the regimen came with some "Kapow" and a little "Bam."

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.

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.

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.

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.

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.

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.

A FISH story

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.

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?

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.)

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.

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.

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.)

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.

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.

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.

On the way from Calais

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.

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.

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.

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.

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.

The rigors, minus the mortis

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.

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.

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.

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.