Myelofibrosis

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Myelofibrosis

by dezon on Thu Mar 24, 2011 01:48 PM

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My mom has had  myelofibrosis for the past 35 years and now in the final stage of this difficult disease. She had a great doctor that kept her going all these years with a range of medication. She now has impending leukemia and being given a low dose of Chemotherapy every two weeks. Time will tell how long she has. Maybe we can all form a group on Facebook dedicated to myelofibrosis  or something to keep the discussions relevant and help each other. There is not much help out there so hopefully as a group we can help each other. Feel free to send me your thoughts.  Email me at

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 and lets see if we can form a group or something to support each other etc - thanks and regards to you all

RE: Myelofibrosis

by animallover on Thu Mar 24, 2011 09:19 PM

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On Mar 24, 2011 1:48 PM dezon wrote:

My mom has had  myelofibrosis for the past 35 years and now in the final stage of this difficult disease. She had a great doctor that kept her going all these years with a range of medication. She now has impending leukemia and being given a low dose of Chemotherapy every two weeks. Time will tell how long she has. Maybe we can all form a group on Facebook dedicated to myelofibrosis  or something to keep the discussions relevant and help each other. There is not much help out there so hopefully as a group we can help each other. Feel free to send me your thoughts.Email "" target="_blank" rel="nofollow">http://thoughts.Email " target="_blank" rel="nofollow">thoughts.Email me at cigars4u@gmail.com and lets see if we can form a group or something to support each other etc - thanks and regards to you all

Dear dezon,

35 years is a long, long time for a myelofibrosis patient. Has she always been ill for all those years? The reason I am asking is because I was diagnosed in 2005 and other than  anemia and enlarged spleen, I am not what I would call ill or suffering. In fact, I feel very well.

In answer to your suggestion about a FB dedicated to myelofibrosis, I formed the first "Cause" group 2 years ago to support the MPD Foundation. We now have 224 members and have raised over $1200 to fund research. I believe there are at least 3 othere MPD Foundation causes on Facebook as well. Also, there is an MPD chat available, but it covers all the myeloproliferative disorders, not just myelofibrosis. If you are interested there is also and organization called NORD National Organization of Rare Disorders. There are a few myelofibrosis patients to chat with on that site as well.

I have been in direct contact with a few other patients over the last 2 years and if you would like to chat with them I could ask them if they would like to share their email addresses.

I hope this information has been helpful to you. Please let me know if I can be of further assistance. 

RE: Myelofibrosis

by dezon on Sun Mar 27, 2011 07:11 AM

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Hi and thanks so much for your reply. To answer your question: For about 30 years her Doc kept it pretty much undercontrol with a combination of medication- she suffered mainly enlarged spleen, loss of appetite and wieght and carried on pretty much a normal life. Two years ago she had her spleen out as the medication could not control it any longer. The she recovered quite nicely for 6 months, then started going downhill...........was on Interferon for some months (bad side effects and diddnt help too much).......now on a mild dose of Chemo every two weeks. Time will tell........if you need any other info just let me know - all the best you 

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