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Myelofibrosis

MESizelove
Posts: 5
Joined: Nov 2005

I would like to make contact with other patients with Myelofibrosis. I was diagnosed in Aug 2001 and have enjoyed 4 years of "stable" blood counts (hemaglobin around 11) until this fall when they began to drop. HGB 9.9 end of Sept and 9.2 beginning of Nov 2005.

AuthorUnknown
Posts: 1564
Joined: May 2006

Hello,

You may want to do a search of the CSN website (with the search bar at the top of this page) using the search term myelofibrosis. If you find an individual you would like to contact you can do so through the CSN internal email system.

I wish you well,

Dana
CSN Dana

saraholly24
Posts: 1
Joined: Jan 2010

hello my father was diagnosed with myelofibosis in october. He has progressed very rapidly to a platelet count of 14,000 now. Please write me back I would like to know of any treatments you have recieved etc. Thank you so much God Bless

grams1
Posts: 1
Joined: Jan 2010

I was diagnosed with idiopathic myelofibrosis in September of 2009. My blood count was at 5. I have now had a bone marrow transplant and am recovering from that. It is a very long process but I am hopeful that it will cure me. I was told that the transplant was my only hope. Grams1

momarandme
Posts: 1
Joined: Jan 2010

Hi. 1st time user here.
I have MDS and I am a candidate for BMT. However, the risks are high regardless of having or not having. Afraid of the BMT. Any words of wisdom? Where did you go? I know all about it from the books, pamphlets, and doctors/R.N. Is it worth it regarding quality of life issues? Any suggestions from someone who has started the BMT?

My hematologist is treating me with Vidaza injections currently. He wants me to have a BMT if I can find a matched donor.

ms_survivor
Posts: 6
Joined: Mar 2010

I am 5 months post bone marrow transplant and starting to feel like myself again. I had my BMT at the University of Chicago. I was lucky to have an unrelated perfect, genetic match in the Bone Marrow Registry. I have six siblings and none were a match. Thank God for people out there willing to donate for a transplant. The BMT was tough, but so worth the results. Pray and keep up a positive mental attitude and you will get through this. A BMT can be curative and you can live a normal life again. Last year, I had over 50 transfusions. Haven't had one now since October. You can do this.

dianne428
Posts: 3
Joined: Feb 2010

I was diagnosed with MF SINCE 2007.In 2009, all the symptoms appeared: Large spleen, counts dropped drastically, petechia all over my body and face, lost 30 pds!.
I tried everything, from revlimid to radiation . I am transfused every 5 days.
Thankfully I have a perfect match form a sibbling and I am being evaluated now for a BMT.
I am tired and really done with transfusions. I am hoping the BMT works for me! Thanks ms_survivor, you gave me hope.

ms_survivor
Posts: 6
Joined: Mar 2010

Dear Dianne: Just wondering if you got your transplant an d he it went? Hope you are doing well. I will be going in for a second transplant next month.. Got to be easier this time. At least I know what to expect.

pbandy34's picture
pbandy34
Posts: 1
Joined: Jan 2010

I was diagnosed in July of 2009 with Primary Myelofibrosis. I am currently being transfused with hemoglobin about every 3-4 weeks. My platelet count has just dropped to 870K from 1.2M thanks to Busulfane. My Hematologist is trying to avoid a bone marrow transplant at all cost right now.

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