With the recent ONCLIVE video as a stimulus, I just posted my Personal And Clinical Reflections on ITP In CLL, a subject near and dear to my heart. Please see bkoffman.blogspot.com
Scary times that I shared on the forums as I struggled through a bad batch with my CLL related immune complications. Glad they are behind me.
Admin: removed period at end of Brian's first link so the link would work. The HU site will not correctly resolve a web link if you have anything other than a space immediately after the link...
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bkoffman
CLL CURE Hero
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Brian, thanks for sharing your story, which will keep the spark of hope alive in those of us going through really tough times.
For those of us with some degree of Immune Thrombocytopenia (ITP) - and I too suspect that many mild cases go unrecognised, this has to be a must see video. Given the expertise of those interviewed, It is evident that there's still a great deal to be learnt on how to determine the most effective treatment course for each respective patient.
I have 17p deleted diagnosed 14 months ago. Within 6 weeks of diagnosis of cll I had severe ITP which required steroids and rituximab to control . After 5 months it came back suddenly with plts as low as 4000! Fortunately there were no bleeding complications. Responded to repeat treatment but not as well. Got into clinical trial at OSU with dr Byrd with 2nd generation BTK inhibitor ACP-196. Now off steroids plts ok no side effects. Appears to be better than ibrutinib. Wish me luck.
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