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Had my six-month return visit to Stanford with Dr. A and Dr. B last Tuesday. The power of these patient groups and the web remain for me critical as I try to make decisions on evidenced based findings, yet all the evidence is not in. Thin Decisions: I now look at this journey with many treatment decisions being "clear" decisions where the consensus, when one reaches the competent specialist, is pretty clear. Initial W&W while chasing vaccine unsuccessfully was pretty clear. The majority of decisions remain though what I am calling "thin" decisions. That is experts are saying it could go either way, or different experts lean slightly to one decision and the other the opposite. In my case that was whether I should have 8 cycles of CHOP-R versus 6 for my transformed diffuse large B cell lymphoma (DLBCL). CHOP versus CHOP-R for DLBCL was a clear decision thanks to recent published research. Also for me the thinnest decision yet has been to do consolidation autologous transplant or not after CHOP-R. I chose not.
Stanford and ASH (American Society of Hematology): So back to our patient groups, the web and my Stanford visit. With the ASH conference on the horizons (December 6-9) and the many abstracts on-line thanks for Karl, Greg Defoe and others - it raised the question of both maintenance Rituxin for increasing my current CR (complete remission) for both the DLBCL and the indolent lymphoma which still lingers inside of me. So I posed the question to Stanford with no bias of wanting more treatment - even the relatively benign Rituxin. It turned into one of my more amusing visits.
Getting to an Opinion: Dr. A leaned rather positively to go with Rituxan maintenance. We discussed in detail the recent studies (phase III abstracts that have ambivalent success - better TTF (time to treatment failure) but no change in OS (overall survival) - with DLBCL and definitive results with prolonged TTF in indolent NHL. As usual I am able to discuss for some time with the primary Stanford physician Dr. A before I get a quick visit from my favorite lymphoma god Dr. B at the end of my visit. So I wait for over forty-five minutes after Dr. A completes our discussion and exam. Dr. A returns with Dr. B. Dr. B goes directly into the mixed results on maintenance Rituxin and DLBCL. I remind him I am transformed and still have the indolent NHL also. I ask that he must have seen the articles as a peer reviewer and know something more then is what is on the web (abstracts only). Better then that he said. In the "backrooms" of Stanford oncology while I waited he, Dr. A and one of the authors (I suspect Dr. C) discussed the results for over 30 minutes from the various new reports on maintenance Rituxan and my situation.
Now this is clinic day at Stanford - the wait line is long. I kind of felt special now - and a little guilty, I was just posing the question. Dr. B starts again saying his well practiced "we don't really know". Going to his researcher mind set. I have learned from him and others and directly challenged in a humorous way that is what he always says with my "thin" decisions. I challenge that since he and helped develop Rituxan and the discussion he just had - he must have an opinion. He explained his thoughts based on the evidence with the normal guarded language. I summarized then that he was then leaning definitively towards maintenance Rituxan and Dr. A felt more strongly favoring treatment - in my case. Dr. B is a minimalist in treatment - he generally goes to the least and least toxic treatment when there is a "thin" decision. So his leaning towards maintenance was more then that and he begrudgingly admitted it. We talked downside risk of the unknowns of long-term depletion of B cells. No data pro or con so I asked for a weight on that potential risk. In the end the greatest risk was financial if my health insurance will pay for it. I am finding that out currently. So maintenance Rituxan it is - we all agreed. Dr. A will now talk to my local oncologist to administer and I have asked my local doc (quite talented himself) if he concurs. My final test on "thin" decisions. I'll hear I'm sure in a few days and start Rituxan next week I imagine.
The Best Opinion: My recent experience shows me the value of self education, the web, cyber groups and the accessible information leveling the playing field between physician and patient - maximizing the right doctors to get true opinions when forced to decide on a "thin" treatment decision. I fear they would stay a bit too quite and conservative otherwise.
An Odds Game: In the end what we do not know - whether it is gene mapping, new targeted therapies or combination therapy studies to come - this is all still an odds game. The best chance we have beyond that which we can not control is to make the "best" decision at each treatment decision. At times that decision is 51% to 49% one direction. Then the decision we do make only has X chance of success. But collectively the percentages add up. Then we are left with the things we currently have no control over so faith, prayer and hope must rule over uncertainly. In the end whether I live many more years or not I have played the game the best I could. It takes some work and at times I tire of it all.
As I come up in December to my one-year anniversary CT after finishing CHOP-R, I am reminded of some humorous feelings shared by fellow patients in DC.
"We keep having these tests that we are not allowed to study for, worse at times we fail the tests miserably and even though through not fault of ours we are are disappointed, if not crushed."
We will see. The only control I have is being part of my treatment decisions.
Rich
Rich Bloom 51 year-old, male, diagnosed July, 2000 with stage IIIAS (massive slenomegaly) non-Hodgkin¹s Lymphoma, follicular mixed (grade II), B cell. Progressive dramatic spontaneous remission w/o treatment to complete resolution of spleen (85% reduction in volume and no lesions) and no lymphadenopathy neck to pelvis. W&W. July, 2002 sciatica like pain, L4
spinal involvement discovered. Transformation to aggressive NHL assumed. Palliative external beam radiation in June, 2002 (3,000 cGy in 10 fractions directed at the lumbar spine). Restaged July 19, 2002 mass in left iliac crest & posterolateral left 7th rib lit up. Biopsy July 24, 2002 confirms stage IV Diffuse Large B-Cell Lymphoma (transformation). Eight cycles CHOP-R
completed December 30, 2002. Restaged February, 2003 demonstrated complete remission to a molecular level. Harvested and cyro--preservation peripheral stem cells in case the DLCL returns and autologous transplant is needed. Remain is full remission currently. November, 2003 scheduled to start maintenance Rituxin (1xweekx4 weeks ever 6 months for 2 years).
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