Myelofibrosis

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Myelofibrosis

by Dayxday on Tue Dec 20, 2005 12:00 AM

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I know what you mean about the blank looks. And so many say, "You look well." I was diagnosed Aug 2001 and have been looking for another person with this in my state (Maine) for four years. None so far! I've been attending a general cancer support group and a Leukemia, Lymphoma, Myeloma Support group. They have been helpful but it would still be good to talk face to face with someone that it would not require a complete medical dictionery explanation for them to understand. Blessings, Dayxday

Myelofibrosis

by Dayxday on Tue Dec 20, 2005 12:00 AM

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I am 61 and was diagnosed with Myelofibrosis in August 2001. This is a capricious condition and affects people differently. I have not found a doctor that is willing to discuss "how long do I have" yet. Has your mother given her doctor permission to discuss her condition with you? If so ask! A good doctor will answer any question to the best of his/her ability. Blessings, DayxDay

Myelofibrosis

by Upbeat on Wed Dec 21, 2005 12:00 AM

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About 15 years ago I was told I had a myeloproliferative blood disorder evidenced by a very high platelet count. No treatment was recommended. Suddenly in 2004 the platelet count dropped significantly (back to within the normal range) but the red blood count and hemoglobin also dropped to below normal. In March 2005 my spleen enlarged and after a bone marrow aspiration I was diagnosed with idiopathic myelofibrosis. I am 61 years old, work full time, have no pains or discomfort to speak off other than night sweats. (Does anyone know how to reduce night sweats?) I am now taking procrit once a week (40,000 units) to stave off mild anemia and stay at the minimum normal RBC and hemoglobin level and do monthly CBCs for monitoring. Doctors have told me that I will need a bone marrow transplant at some time in the future and I have a sibling who is a match. My doctors don't subscribe to the idea that no transplant should be given to anyone over 55 and go as far as 70. What is so unsettling, however, is not knowing how this disease will now play out. I do not know what plans to make in the interim. Will it be one year, two, five? They can't tell me. A bone marrow transplant will put me out of commission for about a year I've been told, which means that my job would be lost too. Only a few people in my immediate family circle know about my condition but not at work or any of my friends. Is there anyone out there with a similar situation who might have some concrete advice?

Myelofibrosis

by Froglady on Mon Jan 02, 2006 12:00 AM

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Upbeat, your circumstances are similar to mine. I was diagnosed at age 61 (Jan 05)with idiopathic myelofibrosis only because my physician was concerned about my anemia and referred me to a hematologist to check it out. I am doing well and am almost asymptomatic - very little spleen enlargement and the anemia has decreased also. I'm not on any meds at this time. But I have night sweats, fatigue, and lately diarrhea (? is this related). My doctor pushed me to get a consult for a BMT in spite of my age and I am lined up to receive one - when my condition worsens. By then, I may be too old to be considered. Does anyone know the age of the oldest successful transplant? Doctors really scare you about having one but - what are the options considering the prognosis?

Husband With Myelofibrosis

by Pete_2 on Mon Jan 23, 2006 12:00 AM

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My husband was just diagnosised with myelofibrosis, and is still feeling fine at this time is not getting any treatments, but his liver and spleen are both enlarged, and is feeling some discomfort from the enlarged spleen the doctor said he has maybe had this condition for a few years. two years ago we started with protein in the urine wonder if others have had this problem. he is still able to work he is 61 years old. there is a new drug that they might try called lenalidomide, when it come to the point he needs something. wonder why we have to wait until this gets bad., before medication is given. I am having a really hard time dealing with this. pete

Upbeat

by Pete_2 on Wed Jan 25, 2006 12:00 AM

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Hi You are the same age as my husband that was just told he had myelofibrosis , was wondering if they have started any treatment on you . He feels fine yet too and is able to work. but is really tired. the doctor has not put him on any medication at all. I feel like they should try some of this new medication but wonder why there is a waiting game we just go in once a month for cbc. he said there was a new medication that they could try expensive but at this point any thing is worth a try. My sister was put on this med. as a trial for her bone cancer and is doing lots better after 2 months on it her blood tests are coming back a lot better and expects to be in remission after next month. the med. is revlimid also taken with prednisone. next time we see the doctor I am going to tell him we want to start on somthing or maybe go to mayo see what he says. hope you are doing well . pete.

Reply to Froglady

by Upbeat on Sun Jan 29, 2006 12:00 AM

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Thank you for reacting to my earlier message. I am surprised that you are not receiving some medications such as procrit to fight anemia. Night sweats are common with this condition and in some write-ups diarrhea is mentioned although not in all. I do not have that symptom. My procrit injections seem to keep me from becoming fatigued and the cbc's continue to be stable although the white blood cells show some abnormality. My spleen is working overtime but it is not painful, liver is normal. Has there been any change in your spleen or liver? As far as the upper age range for a BMT, doctors here tell me they go as high as 70 at the City of Hope in Duarte, CA. You are right though, there don't appear to be any options in the long run.

Reply to Pete

by Upbeat on Sun Jan 29, 2006 12:00 AM

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If you suffer from severe fatigue you should be on procrit or something similar. Is your doctor holding off on a medicine due to other factors?

Upbeat

by Pete_2 on Tue Jan 31, 2006 12:00 AM

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my husband has not been put on any thing for his anemia as they said it is so little at this time but next time we see the doctor I am going to tell him as soon as he sits down he is alsleep things might have changed in his blood work in the past three weeks too. has any one been put on a medication that has slowed down this? I can hardly think of any thing else except his health. hope all is well. Pete

Fatigue

by Upbeat on Wed Feb 01, 2006 12:00 AM

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Ask your doctor about procrit and if that would help. This is a rather expensive medicine (about $2,000 a month I've been told by the pharmacy) and is self injected once a week. It helps to raise the red blood count. My insurance is covering all of it so in my case cost is not an issue and self injecting is a rather simple procedure very much like insuline injections. Is your husband also having fatigue symptoms at work?
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