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Myelofibrosis (Bone Marrow Disease)

GolferNan
Posts: 12
Joined: Aug 2010

Just looking for someone with this same disease. It is rare, so it's hard to find people who have it....Have had diagnosis for 5 years.
Husband died suddenly in April, 2009 so have been very lonely not having him to talk to and support me in dealing with this terminal disease..

anyone out there who can relate????

GregStahl
Posts: 188
Joined: Apr 2010

the Bone cancer topic there is a discussion in progress on this.

Karen_Lynn
Posts: 5
Joined: Aug 2010

Hi GolferNan,
I have myelofibrosis as well. I was diagnosed 5 years ago too and am always interested in talking to others that have the illness. Are you currently having treatments done? If so, what is happening? At this point I am only being treated for my anemia which involves getting bi-monthly injections of Aranesp to make my bone marrow produce more red blood cells. I have been receiving thes injections for almost 4 years now and they are controlling my anemia.
I am so sorry to hear about the loss of your husband. It must be very difficult to deal with this illness alone. Reaching out to others who share the same disease is a good thing. I am here if you need to talk.
Karen

GolferNan
Posts: 12
Joined: Aug 2010

Hi Karen,
Thank you for your kind words. This has been a difficult time for me, but I know that I am not alone and there are many more who suffer from this rare disease. It is such an unpredictable disease in that it effects everyone in a different way. I was anemic for about a year (not bad) and occasionally my hglb goes down and then back up to near normal. My main symptoms have been an enlarged spleen and I have been having bone pain in my legs, knees and pelvic areas which seems to be getting worse. My red blood counts have always been low as well. My marrow has started to scar and that is what causes my bone pain. If you've done research(I'm sure you have)you know that when the marrow scars that changes how the marrow produces other blood cells. No one seems to know how fast this process is or what my prognosis is. I try not to dwell on that....

I had a blood clot in March and the doctors don't know if the MF caused it or not. I'm on blood thinners which my hematologist said I would probably be on the rest of my life. My bone pain has increased so the doctor put me on a chemo drug called Hydroxyerua (not sure of the spelling). I cannot tell if it is working or not as I have only been on it about 8 days. I do know that it makes me tired and a little nauseous at times. But I'm toughing it out and try not to let it get me down. I go for follow up blood work next week to see if it has thrown my other blood counts off. There are a lot of side effects to this med.

If you don't mind me asking,where are you located? I am in NC (Charlotte area) and am 65 years old. My sister lives close to me for 6 months out of the year. The rest of her time she is in Dunedin, FL with her husband. Their daughter lives here year round. I also have my oldest daughter close by. I have 3 grand children (all teens). I also have another sister and two brothers in NC. I am fortunate to have so much family close by, but my husband was really the only one who knew what I am going through and how this disease has affected me both mentally and physically. I know that you understand what I am talking about.

It is a comfort to know there is someone "out there" that is in the "same boat" as I am in.. Thanks for writing me...Please stay in touch...

May God continue to bless you with strength, peace and the good health to keep leading as normal of a life is possible.

Nan

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