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VIOLA
MemberKaren,
I will think about you and Dad and I will pray!
MemberOh Janet! Thank You very, very much! My Dad has MDS RA with 5q. He was diagnosed in 2003 year. Revlimid is the last resort for Him.I’m praying for making this drug available for Him and all the people on this forum , who must fight with this horrible disease!!! ThaNK You and best wishes for Your Mum! Viola
MemberI am so sorry and my prayers are with you!
MemberDear Patti! don’t give up!!!!!!!
MemberJon … I’m so sorry to hear that Nadine lost her fight. I will pray for her and your family!!!
MemberNeil, thank You!I’m grateful for Your answer. My Dad has started Thalidomide at 100 mg and he is on 300mg now. Dad’s WBC are around 1700. I read about Revlimid and I wrote on this forum that this drug will be probably approve in February 2006. It is very important information for most patient I think. Best wishes to all of You.
MemberKaren! thank You and I would ask You has Your Dad had any negative reacions after taking Prednisone??and is it improvement?? Sarah!Donna! my Dad had aslo problem with his bmb, because His marrow was fibrous.I try find some informations about drugs which can to cause the improvement in bone marrow fibrosis? I also talk to women who has mielofibrosis and she told me there is not drugs which can do it. I’m very arfraid …. Best wishes for everyone!!! I’m thinking about You
MemberHi Sarah! My Dad has MDS 5Q .Last bmb indicated also bone marrow fibrosis.I also found some informations about hyperfibrotic myelodysplasia -bone marrow biopsy shows increased fibres, megakaryocytic hyperplasia and dysplasia. They wrirte that it is difficult diagnosis (myelofibrosis-mds). They also describe case with patients with hiperfibrotic myelodysplasia who responding to treatment with steroids. I also write about treatment Thalidomide+Prednisone, but I don’t know is there some drugs which can to cause the improvement in bone marrow fibrosis???which can slow down this proces???
MemberDi and Scott!
I will be praying for you too. You must be strong!MemberMelody, I am so sorry for you loss, MY prayers are with you and Your family!!!
MemberJane, so sorry for your loss!!!
MemberCarrie!My prayers are with you and the family
I am so sorry to hear this sad news.MemberDear Margota, Bec, JuliMarie!
Thank You very much for Your post and information. I’m very pleased with it!!! It is so difficult. I try read everything about my Dad’s disease and sometimes it seems to me that the more I know, the chance my Fathers will be major. I will don’t stop fighting, because I love my Dad and I’m lucky that I have my family!
JuliMarie! I hope Your Mom will participate in trial with Revlimid and he will be effective for Her! Your Mother is also so young and I believe that You will enjoy life. I wish You and Yours family only wonderful moment!!! I would like share with You my feelings and my thinking, but I have a problem with language.
Bec! Thank You for Your words. Good bless You and Yours.MemberDear Lisa! I’m crying too reading your story!
I beleive that Your Dad is still with you and your family! I will think and pray about You anf You all family!!!
Take Care of You
ViolaMemberHey Bec!Thank You for Your player! Yes, it is horrible disease. I had read about Revlimid which is effective in MDS 5Q. Unfortunately, in my coutry he is unattainable. We trying for treatment Thalidomide. Perhaps, it will be possible, but only by 2 mounth and I am concerred about too short period. We herd that Thalidomide may be useful in treatment of refactory anemia and produced transfusion independens in long-standing RA of patietns with MDS, especjally those who present without blast. My Dad preseny without blast but I’m afraid of disease transformation and negative reactionns.If I READ WELL, yOUR Dad also has’t blast? I’m very sorry to hear that Revlimid was not succesful in treatment of Your Dad, but I beleive that another drug will be effective!!!Bec! Best wishes for You and for Your Dad!I also will pray!
I want also ask You… Does anynoe know somathimg more about treatmant Thalidomide of MDS with 5q?I want also ask You for Desferal pump? My Dad has taken around 20 tranfusion, but his doctor said that it is too early yet on Desferal? I’m soory , my Engish is not very good -
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