Hello everyone! I have a lot to say and ask a little at a time. First I would like to know if anyone is or has been treated with Desferal? I have been using it for over a year, and the Dr.s apparently can't make up his mind how it should be administered. I was getting 1 gm mixed with 250 ml of saline over an hour, once a week. Then they decided maybe I should try it twice a week. Then it went to 2 grams some nurses mixed it with 250, others did it with 500, like they were supposed to, over 2 hours 2x a week. And now the past two weeks and I guess until my ferritin drops they are giving me 2 grams in 500ml saline over 4 hours twice a week. Exjade did not work for me
I'm just curious if they are doing it in an effective way. My ferritin bounces all over the place the highest being 2959 in Jan 08, which does not seem right at all. Dec 07 it was 1601. Last month (Feb) it was 1604.
I've had 19 transfusions~or 38 pints Jan 2005-November 2007.
I started 10 mg of Revlimid daily on 12/1/07. I've also tried Vidaza for a 6 month cycle and honestly I think it made it worse, thats when the transfusions started.
Sorry if I babbled or confused any of you, and thanks for reading
