Quote:
Originally Posted by Birgitta-A
Hi Nixor,
I live in Europe too (Sweden). Since I got my dx May 2006 I avoid alternative treatment - I have read that different drugs can increase antibodies against red blood cells and I had antibodies from dx (perhaps from taking Echinacea for infections).
I take B12, folic acid (some people say that folic acid feeds leukemia cells but I don´t believe that), B6 and mulitivitamines without iron. Then I never eat red meat since I have been transfusion dependent since dx and realized that I should get iron overload sooner or later.
Revlimid is not yet approved for MDS in Europe but for other diseases so your father could perhaps get it "off record". Then there are clinical trials for MDS in Croatia with Dacogen (decitabine) if your father would like to participate in a trial http://tinyurl.com/5c4ffy. Vidaza (azacitidine) will hopefully soon be approved in Europe because the drug company har shown good results for all types of MDS.
Kind regards
Birgitta-A
69 yo, dx MDS Interm-1 May 2006, transfusion dependent, Desferal for iron overload, Neupogen injections 2/week |
Hi Brigitta,
thank you kindly for your replay. Finger cross for you and anyone else out there with this disease. I don't know how to approach this. Do we straighten the immune system or not (and if so, what can we take)? As far as for our doctor, a lot of "wait and see" is around, and "we'll deal with things as they happen".
I know that people who answer these post are not doctors but they have expiriance which can help, so my questions are more in line of searching advice in what to ask our doctore and maybe direct her to treatments which she can understand and apply to my father. So don't hesitate to answer.
Thank you again.