AIHA treatments

[Guest guest]

I'd love to hear from people who have been treated for their AIHA & CLL with something other than just Rituxan & /or steroids & how successful it was. I didn't have a great response to that drug combo & now am looking at something more intense, like Dr Rai's RCD or Dr Zent's R+CVP, esp since my bone marrow is 90% lymphocytes.

Dr Kipps recommended his R+HDMP, to be given outside of his trial (R+HDMP for Fludarabine Refractory), but my local onc, who first said he was OK to use it, now has gotten cold feet & says he "can't in good conscience" give it to me, as it's so intense & he had a patient who was in a previous leg of the trial who died of a massive GI bleed. And having it with Kipps at UCSD outside the trial would be prohibitively expensive for me. While I could look for another local onc who might consent to doing this protocol, I'm thinking that one of the above protocols might be more effective, since the R+HDMP isn't designed for AIHA & to my knowledge, no-one with AIHA has participated in it.

When I say that I had poor results from Rituxan & steroids, it isn't quite accurate. I had four weeks of R & my Hg truly leaped up after the first three, but then dropped one week after the fourth. I had 100mg prednisolone with each R treatment, but no daily steroids during the 4 week course. So, I can't tell if I would respond better to Rituxan with steroids given before, during & after the Rituxan, or not--that is my million dollar question...

All comments on or offline welcome & appreciated!

Regards,

Marcia in CA dx'd 2000, 2007-course of prednisone for AIHA w good but diminshing results, 2008-4 weeks Rituxan for AIHA, ZAP-neg, unmutated, CD-38-neg, 13q14.