Myelofibrosis

Wow, this website is so hard to use. My email is --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- All Y'all come.

Anyone who reads this please feel free to email me at anytime, use Myelofibrosis in the address line or some thing personal and I'll find ya.

Dear Viv,

My Mom's name is Vivian.....you too? Some questions, what is your age range. How bad is your hematacrit levels. PAY ATTENTION TO YOUR CBC's Girl! Hey, does your Oncologist realy dismiss your concerns like that, if he does, GET A NEW ONE. You and your doc need to work as a team, if getting info threatens your doc, get a new one.

Bone marrow transplant is no easy thing. I think most folks have heard about the gal that won the Alaskan dog sled race, Ididarod, three years in a row, she (the strong, strong, strong goddess that she is) is in the Seattle Cancer Center right now having a BMT, (July 2006). Just GOOGLE Susan Butcher, on her site is a link to "my status.com" and you can look through the journal entries her husband is posting. None of them are easy to read........expecially if you may some day have a BMT.

I was diagnosed over two years ago, I had high high platelettes. Three years ago they caused multiple blood clots in my body and lungs. Bad Scene. I'm here to talk about it and that is what counts. Hemotologist came up with the M word, I was totally anemic, (less than 8 hematacrit) and got on to Aranesp and Anagralin. Anagralin reduces plateletts but has bad side effects (like death). After moving to an insurance that would cover BMT I switched to Procrit and Hydrea. Procrit has boosted my Hematacrit to 12.2 and Hydrea (less side effects than Agralin) helps keep plateletts down. If you don't understand what this means, study up on what the bone marrow does. It is very important for you to understand and do every thing in you power to keep your marrow healthy. I have retired from the constrution industry to maintenance. The pace of construction is just too much for me anymore. Hydrea did not make my hair fall out, but I have a reduced immune system and a cold or flu can realy cause problems.

There is a quote I like, but I can't remember how it goes...."dance like no one is watching, love like you have never been hurt and laugh like........"

Warmest regards, Suzanne

Hi my dad has myelofibrosis and diabetes he has had this disease about 4 years but for the past year he has been getting blood every 2 weeks. he is on some medicine call thelamide because the hydrea doesn't work anymore. he has a large spleen his blood after 2 weeks goes down to 8.2 platlets 33,000 and he gets skin sores and pain in his stomach. he gets alot of indigestion and can not eat because he feels full .he went down from 170lbs to 135lbs can anyone with this problem please tell me what they do to relieve the indigestion part because he stops eating when he gets it and he has to eat because of this disease sorry if there is any spelling errors its because its late and I am tired.

thank you

You did not say anything about your Dad's age. His counts are very low and the enlarged spleen is probably not leaving enough room in his abdomen to take in sufficient food. Indigestion can be softened a number of ways, his doctor will probably have prescribed some already. Is your Dad a bone marrow transplant candidate? Has he gone through a period where he took procrit shots to alleviate anemia.

I am 61, spleen enlarged to the point of uncomfortable sleep on my left side. Blood counts: White cells 8.7, Red 4.3, platelets 232
hemoglobin 11.4 and some blasts are seen. Only medicine is a procrit shot once a week + wait and see recommendation. Although it's anyones' guess I expect to receive a BMT within the next five years. I have an older sibling who's a match.

This disease is a Damocles sword.

I wish you well with your Dad.

Upbeat

I am so sorry about your dad, it seems like all doctors try the ole do nothing approach. I took procrit shots when my hematologist thought I was just suffering from anemia. After I had a biopsy and the results came back as myelofibrosis I was taken off the shots and told for the time being I was just going to have to be anemic. He ( my dr.) doesnt want me to have any kind of medication until my blood goes down to a 8.5 and stays there. As of now it varies between a 11 to as low as a 8.8. It is very frustrating to want to do something and be told let's just wait. I am only 39 so he thinks because of my age it is in the early stages and not worth getting upset about just yet.

My husband (age, 35) was diagnosed Dec 27, 2004. He had a BMT in June 2005. The BMT is a very long, boring, wild, difficult, different, journey. It is esp difficult with 3 young children that need to be taken care of during the 100 day isolation period. My husband has done remarkably well. We were told that a BMT was a cure. However some 10 days ago we found out that the Myelofibrosis is taking over again. That is why i am searching web sites, to see if anyone had a BMT to cure myelofibrosis and it came back. I do know of a family who lives in our area and the husband (early 40's) with same diagnosis had a BMT some 7/8 years and he is doing well with no evidence of MF. My husband and I chose to have the BMT b/c we wanted him to have it while he was young and healthy. He had his spleen removed one month before transplant. We will find out late this week what our game plan is.

I'm very sorry to hear about your husband having such difficulties. From your message it would appear that the bone marrow he received is failing again. One sometimes hears about graft v. host disease problems, and perhaps that is related to this. Was the spleen removed because of severe enlargement? Will your husband have to undergo another transplant?

I am glad you mentioned the hardship it puts on family members. It will help us to prepare for what's ahead. I am a 61 year old BMT candidate but with blood counts that are still not low enough to force a transplant.

I wish I could come up with something that would be helpful.

My very best to you both.

Upbeat

My mother Helen, age 88 was diagnosed with myelofibrosis, and I'm trying to learn what to expect...I have learned a lot, but here's my question: Her right elbow swelled up...is that part of it, or is it not at all a symptom?

I do not recall ever hearing about swollen elbows or joints due to myelofibrosis. Is your Mom's doctor not answering this question?

I do not recall ever hearing about swollen elbows or joints due to myelofibrosis. Is your Mom's doctor not answering this question?

Hi Cheryla,
My mother has it too, but she's 88 yrs old and has pretty much enjoyed a long life. She has received 2 units of blood twice, a year apart. It took about 11 months for it to start "wearing off". I'm finding this board very complicated. I asked a question and I guess nobody answered because I can't find an answer. Has your mom had any swelling of joints with this? My mom's elbow just swelled and is painful, and i can't find out whether it's part of the disease. She also has Parkinsons, and chf, so it's REALLY HARD to get her to the dr.s office! God bless u and your mom, I hope she can remain comfortable for a long time. Maureen