Doing well after my second round of bendamustine/rituximab

I am now almost 3 weeks from my second round of bendamustine/rituximab (BR) and am happy to report good progress. At the beginning of treatment I had very large lymph nodes and a WBC of 75K. My nodes shrank considerably after the first round and some more after the second. My WBC has gotten as low as 2.9K (fortunately with the help of Neulasta half of those WBC are neutrophils). I have had side effects though, as expected, as platelets got as low as 20K (got one platelet transfusion) and anemia with hemoglobin to 6.2 twice (got transfusions of packed RBCs twice).

I had shaking chills without fever and then fever during my Rituxan infusion on the second cycle, despite stopping the infusion, giving steroids and Benadryl, I only got 1/3 of the whole Rituxan dose. This was odd as I have had Rituxan many times before without effect. But it is possible to have an allergic reaction any time from the second to the one millionth exposure (this is what I often told my patient's parents when they developed drug allergy after tolerating their amoxicillin many times before). With these complicated biological molecules there may even be an infusion reaction on the very first exposure, the molecule somehow setting off a cytokine storm of sorts. My wife, a recent nursing school grad (yay! congrats over and over!) and I speculated while I was recovering from the shakes that maybe there was an antibody against mice protein in the packed RBC I had gotten a week and a half prior. Packed RBCs have a small amount of plasma and this could contain antibodies or antibody-antigen complexes (for example see http://www.fda.gov/BiologicsBloodVaccines/SafetyAvailability/BloodSafety/ucm095556.htm). If there were antibodies against mouse protein that could explain my reaction, in that rituximab is a chimeric mouse-human protein.

The fever persisted after treatment and even though I had 1.4K neutrophils I was admitted for several days for observation and antibiotics. The fever subsided by day 2 after last Bendamustine and 3 days afte aborted Rituximab. The plan for next round of BR is to preload me with steroids and antihistamines. Here's hoping I don't have to go through the fever part again.

My hemoglobin has run between 8.4 and 7.7 after the second transfusion, and since I am in good cardiovascular shape, having trained for a half marathon this summer, I can tolerate this level, getting a bit winded only when going up hill with my dogs or doing a few staircases. That said, my oncologist is contemplating starting me on erythropoietin to get my hemoglobin up into a more tolerable range.

I will continue to post on my experience, and maybe even a semi-scholarly exposition on bendamustine since I have a week and a half off from my job with the Christmas holidays...

Forget the Revlimid, pass me the Treanda with a side of Rituxan...

Thought I'd update you on where I am at with my CLL. Sadly it has advanced rapidly. Not just a big increase in node size but my bone marrow is involved with the cells to the point where my peripheral WBC is at 56K and I have low red cells and platelets. I have to wonder about my bad luck because you may recall I could not qualify for a great trial with the up and coming oral med, Revlimid,  in the spring because my nodes were not big enough. This time as my nodes increased and the leukemia came back I tried to get in the trial again but I found out this past Wednesday that my platelets were too low to go on the trial! Oh well instead I am to get what we knew was Plan B (but could just as easily been Plan A) - a well established chemo drug called Treanda along with the usual monoclonal antibody Rituximab. (a similar cocktail-- Fludarabine/Rituxan-- has worked well twice in the last 5 years, we are just switching out the chemo drug). I will get 28 day cycles up to 6, starting next week. So I have high hopes...


Instead of posting a semi-scholarly review of Revlimid in CLL (I had downloaded almost 20 articles covering clinical trial results and possible mechanisms of action as well as experts view of how Revlimid could fit in to the CLL armamentarium)...look in coming days for a similar analysis of Treanda (bendamustine)

Opening this blog / All about me and my journey

I am a 61 year old physician, who was diagnosed with CLL on the basis of a high lymphocyte count done as a routine test in October 1997. I was watch and wait at the start. Having this disease in which both the condition itself and its treatment lead to immune defects, I realized that perhaps continuing as a general pediatrician constantly exposed to viruses may not be a good idea. So I left practice and while working as an internet medical news editor got a Masters degree in computer info systems, and then moved to Philly area to work for a company that does pharma marketing primarily via the internet. Changing docs due to the move, I settled on a small group at Hahnemann hospital (Drexel med school) because they were the first to do bone marrow transplants in the region. This is a decision I do not regret as I like all 4 docs in the group and the 2 oncology nurses I know well. I am not in a rush to get a stem cell transplant as have not been that sick and still have meds available to treat me. Although I went to U Penn med school I chose this group and even after the amazing news from Penn about the experimental T cell activation success in CLL,  have yet to even get a second opinion there, but certainly will if I feel I need to consider another direction.

My treatment history sinee diagnosis:

• In 2004, WBC went from over 100K to about 60K but had fever, increased nodes, enlarged spleen and liver as well as decreased red cells and platelets, I responded well to fludarabie alone then.
• Several years later my WBC also increased and had anemia and thrombocytopenia, this time treated successfully with FR (fludarabine and rituximab)
• About 2 years ago WBC went up fast and nodes became much larger so got FR again. On the 5th cycle I was admitted to hospital with fever and neutropenia and although I was given the usual heavy duty antibiotics to cover potential bacterial infection it turned out I had a tick-borne infection called anaplasmosis that responded to a simple oral antibiotic, doxycycline. (I live near the piney woods of Wharton state forest and often walk my dogs there on weekends, believe me, I have been much more careful with deer tick prevention since....)

So now I have had increasing node size since the spring and my count although normal since stopping the FR about a year and a half ago now shows 23K WBC, hemoglobin down to 11 and platelets to 60K. So now may qualify for a phase 2 trial with Revlimid that I failed to qualify for last spring as nodes not big enough then. I will find out in the next several weeks. If Revlimid does not work or can't get in trial  my doc may use bendamustine and Arzerrra (which may work better than Rituxan which I have had before). Time will tell, more musings on Revlimid in next post.