Wednesday, July 17, 2013

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.


Anonymous said...

I've been waiting for your update, David, both apprehensively and hopefully. I now feel better having read your latest.

I think cancer picked on the wrong guy.


pkenn said...

David - This sounds encouraging. I wish I would have known that you would be at UCLA. It would have been nice to meet you there. I am seen by Dr. Pinter Brown and have a friend with follicular who is in a trial run by Dr. De Vos. If you are back this way let me know.

Pat Kennedy from the Forum (aka Pkenn)

~ chris said...

Hi David... great to see your post

Althought my treatment was 4 rounds of RCHOP and two rounds of RCEP, I had very similar muscular problems with my lower back and legs, compounded by DLBCL entering my L2 vertebrae, which required XRT.

I'm 6 months post treatment for Richter's and things have improved, I can manage to get up from a toilet with the use of a cane...

The H in these therapies is hydroxydaunorubicin aka doxorubicine... it was highly cardiotoxic for me... and vincristine has left me damaged as well.

But there has been improvement, month to month.


David Arenson said...

Denny, I loved your line about "cancer picked on the wrong guy." That one is going to stick with me for a chuckle and for encouragement.

Pat, if I go back to see Dr. De Vos, I'll let you know. It would be great to meet you.

Chris, I am glad to hear that you are six months past Richter's. Whatever the side effects of the drugs, you can't complain about that.

Vincristine can be nasty _- the late Dr. Terry Hamblin told me he stopped using it after it put an elderly woman in a wheelchair for life. I have offered more than once to try a limited dose of it again but Dr. Droll insists it isn't necessary.

Even though I'm using it, and Dr. Droll insists it is key to my success, I, too, am wary of the adriamycin, aka hydroxydaunorubicin -- thanks for clarifying the "H". There is a limited lifetime dose that is considered safe to reduce the risk of congestive heart failure. I had an echocardiogram prior to treatment and expect to have another relatively soon. With Richter's, a high-stakes game compared to CLL, we sometimes have no choice but to take our chances with drugs that can have dangerous side effects.

Rolling with the punches is part of the cancer game. Chris, I know you will keep punching back.

Denise said...

All my best to you and Marilyn as you fight your way through this battle. It certainly sounds like the toughest battle you have had to fight, so far. I must say, you're blog silence was most worrisome, especially after reading about your encounter with Commander Richter's army. But, now that I read your always engaging written word with it's distinctive pleasant humor and bits of wit, I feel confident you are still with us and will be for a long time to come. You must be channeling your inner warrior to have beat back Richter's army so brilliantly. Congratulations! Keep up the good fight old friend.

Sounds like it's time to bone up on all the new tips and tricks of the transplant world. It seems like SO much has been learned in the years since I had mine; and that you will probably enjoy a better QOL post transplant than those who went before you.

I'm afraid to ask what the issues are with insurance at this point in time.

Marilyn and Bruce will have a lot of caregiver thoughts to share. It's a job like no other. We were exercising our motorhome upstate NY last week and passed that little restaurant we ate at when Bruce asked about you both. I can't wait to read your blog to him, tonight. I know you've been through so much, but you are still with us and are a good warrior so we can be happy for you.

When you are up to it, again, promise to let us know when you are ready to go on another walkabout. Since we now have a coach, it would be fun to meet up with you on a roadtrip. Something to look forward to post-transplant, eh?

Our Best to You and Marilyn,
Denise & Bruce!

Anonymous said...

Maybe I missed something in your posts but I can't understand why your Dr's allowed so long to go by before aggressively addressing the Richters. That having been said-as a fellow victim of C.L.L. I admire your "guts" and willingness to share your experiences.

Diane Mackinnon said...

David, I was so relieved to read your latest post. Always enjoy hearing from you but this was crucial. As a fellow Richter's patient (now 2 years out) I can definitely relate to your variation of R-CHOP. I could only take 4 cycles of the stuff and was gifted with neuropathy in my feet and lower legs. I am currently in the NIH ibrutinib trial which at my age of 74 is the best option out there for me. Managed to qualify for the trial because 6 months after treatment my PET scan was normal.
So glad you are still here to enjoy life.

Anonymous said...

There's some encouraging things there, thank you for the update. Fight the good fight fight David.
Our prayers are most definitely with you

David Arenson said...

Thanks again for all your good wishes. It's always encouraging to hear from veterans like Denise and Diane, people who have successfully walked the path I am about to walk. Denise, I'm glad to see you've kept on truckin' -- er, motor homin'.

As to the question from anonymous, there was not a long wait in addressing the Richter's. There was a period of about two weeks from when I strongly suspected it might be Richter's until treatment began. I saw Dr. Kipps on a Tuesday and treatment began with Dr. Droll three days later.

In my last post, I mentioned that during a blood draw at the beginning of April, a Sonora Quest phlebotomist had mistakenly taken my HDL instead of my LDH. By way of background, a high LDH combined with platelets below normal can be taken together as one possible warning sign of Richter's.

That test showed low platelets but the LDH was, obviously, missing. Had the LDH been measured, and had it come back high, then I think it's possible we might have caught the Richter's very early on, well before the huge tumor growth.

I have had dozens of blood tests over the years -- and this was the only one in which there was such a mistake (confusing HDL and LDL). All this serves as a reminder that you should always check the final test orders and take nothing for granted.

Anonymous said...

Glad to read your update. Have been thinking and praying for you. Hope things will improve for you soon!

(The Netherlands)

Anonymous said...

I am a fellow CLL'er. I had to get off the CLL listservs and e-mail alerts as I spent too much time reading them. However, I still check your blog about once a month -- great writing. I am pulling for you and admire your resilience. Here's to eating healthy and exercising, hanging tough, and kicking this thing's ass.

Anonymous said...

Hi dave so glad to see such an improvement in your health compared with your june 2nd entry was really worried for you when reading it , Hope you have continued to improve with the treatment .....wonder why others differ in treatment with richters OFAR and R-EPOCH what is the standard or gold star treatment in the states now with Richters ....anyway David keep well and take care ....
Stew (uk)

Deb Light said...

Praying for you you David.Hang in there and Keep the Faith.What a rollercoaster you have been on.You are one tough cookie!!
God Bless,
Deb (LovesLife)

Brian said...

Hi David,

I really appreciate your candor describing your "Sumo wrestler" symptoms: the swelling in middle and lower body (including the "ahem" parts), and the painful experience of having to lie flat in the PET machine. These are just the symptoms that my loved-one is currently having with relapsed, refractory CLL (no transformation).

Reading your post made us feel not alone with these seemingly random or inexplicable symptoms, like a swollen foot, extreme pain lying down, and bloating. The doctors say these will resolve when the nodes shrink. Reading your blog gives us hope that this can be the case!

At our end, he's receiving lymphoid irradiation at low dosage, just enough to shrink the nodes, the goal being to debulk the nodes as a prerequisite for proceeding to stem-cell transplant. We're in NYC, by the way.

I'm rooting for you and looking forward to your next update!