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Old Thu Sep 1, 2011, 08:28 PM
Greg H Greg H is offline
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Join Date: Sep 2010
Location: North Carolina
Posts: 660
Hi Birgitta!

Thanks much! I will read this with great interest. I'm getting a pretty big pro-revlimid chorus in my crowd-sourcing, so I need all the info I can obtain about it.

I listened to a webinar with Dr. Sekeres from the Cleveland Clinic today and asked a couple of questions about Revlimid, and also about transfusion. One of the tough decisions for me is whether to simply stick with transfusions for a while, since my platelets and WBCs seems to be fairly stable at a reasonable (though not exactly normal) level. If I take Revlimid, I have the chance to decrease my transfusion load, but also the risk of destabilizing my platelets and WBCs, at least temporarily.

I know you have said you made the decision to try thalidomide only after your need for transfusion increased to once per week. Did that happen suddenly or gradually?

I dropped rapidly from transfusions every four weeks to transfusions every two weeks. Because I am self-employed and have only a short journey to the hospital, every-other-week transfusions are not a terrible burden.

I have acquired two blood antibodies, but my local blood bank has found a supplier that can provide appropriately screened RBCs on in 24-48 hours.

One concern I have, and that I need to research more, is the impact of acquiring these antibodies on the prospects for transplant in the future. Ihave read credible information that folks who acquire one antibody are more likely than average to acquire additional antibodies, but I am not certain about the impact on transplant. I am not anxious to proceed to transplant, but I would not want to foreclose that option, if antibodies are likely to be a problem.

Thanks again for your help! You are a veritable library of great research articles; you must have an amazing filing system.

Take care!

Greg
__________________
Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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