Hi Marmab,
Your experience personifies the complexity of these blood diseases.
Before I read #3 in your post I was already thinking of suggesting that you go to NIH to see what they think. My husband had Campath there in 4/09 with minimal response. He was the first patient in their low risk Promacta trial and started the drug in March, 2011.
I have posted about his great response under "Clinical Trials" which I'll direct you to instead of writing it again. Bottom line he has been transfusion independent for platelets and red cells since last spring. Cyclosporine did nothing for him - the Campath normalized his white cells only - but that was a blessing.
So you can fully appreciate his progress while on Promacta, he needed about 60 transfusions in 2009 (blood but especially platelets) and the same for 2010.
Please feel free to contact me via e-mail if you have any further questions that my posts haven't answered -
shcalvert3@aol.com - or send a private message if you would prefer that.
NIH is a wonderful, healing place with doctors that will sometimes answer e-mails within minutes - they are so accessible!!
I also want to mention that Don has tolerated the Promacta very well. He just had a BMB in Feb. and all was well with the potential side effect of fibrosis - so far so good.
Best wishes and God Bless,
Sally