Hello all,
Jules, I suspect that your zero platelet count result was probably a lab error if you've not been bleeding. I hope that your repeat count is OK. If you check on
www.clinicaltrials.gov and search for trials with Nplate and MDS there is one open with study locations in Australia which might be an option to consider before transplant. Hopefully the results from those trials will be back before you or I have to make that decision. Thanks for your advice about getting on with life with this disease. Trying to not let MDS define your life is good advice although that may be easier said than done at times.
Birgitta, It is good to hear that your platelet count is staying up on the Thalidomide and that you are tolerating it without significant side effects, I hope. Your research benefits us all!!
Rose, Thanks for your advice about not dwelling on the negatives for too long. As someone who has gotten down to a platelet count of 18, it is reassuring that your husband is doing well at 17 without bleeding.
Gipper, Thanks for sharing your experience with Nplate. It really helps to hear from someone who has tried it. Have you had any side effects? I was intrigued by your story of having ITP and MDS since I had low platelets for years before being labelled with possible MDS. Did you have ITP before your MDS and myelofibrosis were diagnosed or do you think you really had MDS all along? I've often wondered if ITP could transition into MDS?
Best wishes and luck to all of you. Tytd