A good Thursday morning to everyone. I had a good night's sleep, all things considered. The cliff's notes on yesterday are that Renee and I got an orientation at the stem cell transplant center, and we had a very good meeting with Alice, Dr. Keating's nurse, where I learned that my white cell count dropped from 95,000 to 39,000 overnight after my rituximab treatment Monday!! Alice says I'm doing great and the reaction of my cancer to the rituximab was excellent. Finally I had my 3rd day of treatment which I tolerated very well. Cause for rejoicing!
Regarding the stem cell transplant orientation, my status as a 17p CLL patient means that all things equal, 17p patients do not do as well with standard treatments, have more difficulty establishing stable remissions, and remissions that are achieved are, on average, shorter than non-17p patients (17p refers to a chromosome abnormality that has been established to correlate with these disease features - about 10% of CLL patients are 17p). For this reason, 17p patients are routinely accelerated into the stem cell transplant preparation process - the prep process is mainly to obtain approval from the insurance carrier to cover the procedure which costs between $300 and $500K. The insurance companies put you through a lot of paces before they approve. Whether and when I have a transplant will depend on how my FCR treatment goes, whether I get into a stable and durable remission, and if or when I relapse, what other second-line treatments are available, etc. The transplant people (my doctor in transplant is Dr. Chitra Hosing) say that their normal procedure is to transplant 17p patients as soon as they achieve a stable remission, i.e., the first remission. Dr. Keating at this point doesn't plan to recommend transplant on first remission and Alice, Dr. Keating's head nurse, made a funny comment yesterday when I asked her about the differing opinions, to the effect "they're transplant people - they think everyone needs a transplant". I found that hilarious - the MD Anderson equivalent of "when you are walking around with a hammer, everything looks like a nail".
Back to Dr. Hosing - the key facts and numbers on transplants are that they give you a week of chemo to suppress your native immune system (stem cells), transplant the donor cells, wait a week or two for them to start producing new blood cells and rebuild your blood - while fighting side effects like infections and graft vs host disease, or GVHD (this is when your new immune system attacks things it's not supposed to attack).....after 3 to 4 weeks in the transplant unit, if all goes well you go into a local (here at MD Anderson) outpatient care facility for another 2 to 3 months, so typically it's 3 to 4 months at MD Anderson. It can take a year to two years for the new immune system to fully stabilize and work properly - ie it's a long road (as my friends Bill and Barb Maton know first hand). According to Dr. Hosing - here's the payoff - there is about a 50% CURE rate. I was surprised that she used the word cure - but that's what she says - the disease is eliminated and it doesn't come back. Some patients do well for a long time but can relapse and there are additional options after tham including re-transplants and other new drugs that are being tested now....the reason they don't just transplant everyone right away is that there is a 10-15% mortality rate in the first year - so high risk, high reward. That's more than enough info on transplants for now since we don't know if or when that will be in my treatment plan.
Moving to our next meeting with Alice Lynn, my nurse in the leukemia department, I had been through two treatments, the rituximab on monday and the other two drugs tuesday - Alice said I looked good, I told her I felt great, and she said my white count on tuesday had measured 39,000, down from the 95,000 measured before treatment. I did a double take - that's lower than it was when I was diagnosed 9 months ago, and it was measured less than 24 hours after the rituximab treatment. Alice said that was great, the drug was having the desired effect on my cancer cells. My lymph nodes were also noticeably smaller. AMAZING. It still feels so early in this treatment process, I don't want to get ahead of things, but clearly the initial reaction was very positive, and also my side effects so far have been minimal.
My treatment yesterday was scheduled for 7 pm but I popped in there after lunch to see if they could work me in earlier - I did end up getting in at 3 pm and out by 5:30 so Renee and I could go out for a nice dinner last night at a nearby restaurant. I'll try to do that again today. I plan to go to the gym after I get this post up and see how I feel on the stairmaster. The main events left here are my treatment today and a final meeting with Dr. Keating tomorrow morning. Renee and I are ready to get back to wintry Raleigh.
As always, thanks for your concern, prayers, emails, and wonderful support.