Guest guest Posted December 20, 2004 Report Share Posted December 20, 2004 , What is AIHA? Thanks. On Mon, 20 Dec 2004 20:54:39 EST, jb50192@... <jb50192@...> wrote: > > Hi group members - a cry for help form your moderator..... > > I think I posted this once before, but I have now seen Dr. Kanti Rai and Dr. > Mort , both, and they confirmed my view..... > > My CLL has been in nice remission for going on five years. Plus, there are > now so many choices for dealing with relapsed CLL that this situation was not > really worrying me. > > What had become the major and dominant problem is the AIHA I developed this > summer (always on the wrong side of the stats, 15-20% only). It was fixed with > high dose Prednisone and Rituxan, but there it hangs over my head, waiting to > come back..... > > All my docs agree that the AIHA is what I need to worry about, not the CLL. > Strange turn of events, no? > > And, as for AIHA, nobody knows what causes it, the fixes are few, and it is > totally unpredictable. The last time I mentioned this several of you were kind > to post your experiences, which were generally positive. Although I'm still > very much involved in starting the CIG group, I need to begin to think about > AIHA. > > Any thoughts would be much welcome. > > > > PS: Please keep bringing us people to sign up for CIG. We're up to 130, not > enough. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2004 Report Share Posted December 21, 2004 , Do your doctors say that they think your Aiha is coming back soon? if so why? Are they worried about how to treat it if it comes back again? Won't Rituxan continue to treat it as a maintenance therapy, much the way it is used to treat CLL? I am curious what made you become concerned about it now.....especially since you supposedly have it under control? Lots of questions. :-) Interesting scenario. Thanks, Kurt Once again, AIHA Hi group members - a cry for help form your moderator..... I think I posted this once before, but I have now seen Dr. Kanti Rai and Dr. Mort , both, and they confirmed my view..... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2004 Report Share Posted December 21, 2004 and members - I don't know that I can be of any help in answering any of your specific questions as I have many of my own on this subject. Over the past few days I have been pondering writing to all of you about this and when I read 's entry, I decided the time was right! I was diagnosed last Christmas Eve. AIHA was discovered shortly thereafter. When treatment became an issure shortly thereafter, all agreed that fludarabine could aggrivate, even to the point of mortality, the AIHA so that was dismissed as front line for me. Rituxin was administered but due to severe reactions, even with it watered down and one dose administered over three days, I only received 1 3/4 of the amount desired. I ended up in the hospital for two weeks. That was in August. The last cat scan revealed massive lymph node involvment but unchanged since July. My blood counts were way out of control - more than doubling in six months- but have now been stable since August. I remain on w and w. We are, of course, discussing options for me and I have visited the stem cell transplant center at Temple/Fox Chase. That, of course, is a whole other issue. My local oncologist was at the ASH conference and came back convinced that fludarabine can be used, even if AIHA is evident, if the AIHA is gotten under control first. He said the question of what to do with positive comb patients for therapy was on many minds at the conference. The question was asked more than once and the concensus from the pros was go ahead and use fludarabine now. I'm scared to death of this option. Then again at this point, I'm scared to death of most options! Does anyone know anything about fludarabine use with AIHA? Can I contact about this and see what the feelings are there? ----- maybe some helpful info for you will come out of this if we can get some good discussion going. This AIHA thing is a real pain. I pray all of you have a joyous holiday and that your new year will be blessed. Bonnie Once again, AIHA Hi group members - a cry for help form your moderator..... I think I posted this once before, but I have now seen Dr. Kanti Rai and Dr. Mort , both, and they confirmed my view..... My CLL has been in nice remission for going on five years. Plus, there are now so many choices for dealing with relapsed CLL that this situation was not really worrying me. What had become the major and dominant problem is the AIHA I developed this summer (always on the wrong side of the stats, 15-20% only). It was fixed with high dose Prednisone and Rituxan, but there it hangs over my head, waiting to come back..... All my docs agree that the AIHA is what I need to worry about, not the CLL. Strange turn of events, no? And, as for AIHA, nobody knows what causes it, the fixes are few, and it is totally unpredictable. The last time I mentioned this several of you were kind to post your experiences, which were generally positive. Although I'm still very much involved in starting the CIG group, I need to begin to think about AIHA. Any thoughts would be much welcome. PS: Please keep bringing us people to sign up for CIG. We're up to 130, not enough. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2004 Report Share Posted December 21, 2004 Autoimmune hemolytic anemia, a real bummer, nobody understands it, the body turns on itself and kills red cells...... Quote Link to comment Share on other sites More sharing options...
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