Myelofibrosis

My husband has just been diagnosed with myelofibrosis.  His is 53. When admitted to the hospital his hemoglobin was 61 and he could hardly walk. He had four units of blood and he seems better now.  I read all I could about this disease but some of the info seems confusing.  We have an appt. with an oncologist in two weeks.  Does it mean he will have to have chemo or radiation even if he is not going presently for the BMT?  They said his spleen was enlarged but we never got any details.  Presently he has occasional pains in his legs and his spleen doesn't bother him.  From what I understand, it's better not to remove the spleen.  Someone mentioned the drug Procrit to raise the hemoglobin levels.  Does it have any side effects?  I would really appreciate some info or hear from people in similar circumstances. My husband does his best to be positive but sometimes it's hard. He also has diabetes and has had an angioplasty two years ago so I'm affraid he might not be the best candidate for a BMT.  However, knowing the grim prognosis with this disease, he asked his brothers to be tested as donors. 

Liz

On 8/7/2007 Bookworm wrote:

My husband has just been diagnosed with myelofibrosis.  His is 53. When admitted to the hospital his hemoglobin was 61 and he could hardly walk. He had four units of blood and he seems better now.  I read all I could about this disease but some of the info seems confusing.  We have an appt. with an oncologist in two weeks.  Does it mean he will have to have chemo or radiation even if he is not going presently for the BMT?  They said his spleen was enlarged but we never got any details.  Presently he has occasional pains in his legs and his spleen doesn't bother him.  From what I understand, it's better not to remove the spleen.  Someone mentioned the drug Procrit to raise the hemoglobin levels.  Does it have any side effects?  I would really appreciate some info or hear from people in similar circumstances. My husband does his best to be positive but sometimes it's hard. He also has diabetes and has had an angioplasty two years ago so I'm affraid he might not be the best candidate for a BMT.  However, knowing the grim prognosis with this disease, he asked his brothers to be tested as donors. 

Liz

My husband, who is 44, was diagnosed with this in Aug 07 as well.  we have been married for 2 years and have a 1 year old daughter.  He is taken Hydroxyurea, which is getting his count to a decent level.  It was by an odd reason that the diagnoses was made.  He feels since it was found so early, that he has nothing to worry about.  I, on the other hand can't stop worrying.

 How is your Husband doing?

Hi,

 I just read your message today, so I apologize for not having replied earlier.  I'm sorry to hear your husband has joined the ranks of this terrible disease, especially at such a young age.  Hopefully when he was diagnosed the disease was in its beginning stage and he has many years to live.

My husband is not doing so well.  Since July 07, he has had several transfusions to keep his hgb, and now it seems that he needs them more often then 3 weeks.  The meds, Danazol and Andriol which are a form of the male hormone testosterone, didn't help much with keeping his blood counts up.  He has just started taking Revlimid and Prednisone, but they have severe side effects (in his case) and he is often in quite a bit of pain.

The doctor mentioned Bone marrow transplant even if he wasn't keen of it before due to the high mortality rate with this procedure.

Sometimes I find it very difficult to cope, not knowing what the future will bring and if there's any hope.  This disease, in its advanced stage, can cause lots of bone pain and take you down very fast.  I read whatever I could about it and it's very depressing.

I hope your husband is doing well at the present time.  At his young age, there's hope that a cure will be find before it's too late.

Keep strong and keep hope.

 Liz

On 2/14/2008 Bookworm wrote:

Hi,

 I just read your message today, so I apologize for not having replied earlier.  I'm sorry to hear your husband has joined the ranks of this terrible disease, especially at such a young age.  Hopefully when he was diagnosed the disease was in its beginning stage and he has many years to live.

My husband is not doing so well.  Since July 07, he has had several transfusions to keep his hgb, and now it seems that he needs them more often then 3 weeks.  The meds, Danazol and Andriol which are a form of the male hormone testosterone, didn't help much with keeping his blood counts up.  He has just started taking Revlimid and Prednisone, but they have severe side effects (in his case) and he is often in quite a bit of pain.

The doctor mentioned Bone marrow transplant even if he wasn't keen of it before due to the high mortality rate with this procedure.

Sometimes I find it very difficult to cope, not knowing what the future will bring and if there's any hope.  This disease, in its advanced stage, can cause lots of bone pain and take you down very fast.  I read whatever I could about it and it's very depressing.

I hope your husband is doing well at the present time.  At his young age, there's hope that a cure will be find before it's too late.

Keep strong and keep hope.

 Liz

My husband is doing pretty good.  We have just returned from a cruise.  I guess you might say we are living every day as it is our last.

 We are going to the Mayo Clinic next month to see if they have any new meds or info for us.  All we can do is hope for the best.

I understand how you feel.  With a one year old daughter, I too worry about our future, but I don't want to waste what time we have worrying about what's to come.  I guess you can say I just try and not to think about it while his health is doing ok. 

I'll let you know how the Mayo visit goes.

Best wishes

My husband was dx Feb 06 with myelofibrosis.  Our doctor sent us to M.D.Anderson in Houston, Texas.  He was put on a clinical trial and received 14 cycles of chemo.  He is better.

I'm anxious to here how you get along at Mayo's.

Good luck!!!

On 2/25/2008 retired teacher wrote:

My husband was dx Feb 06 with myelofibrosis.  Our doctor sent us to M.D.Anderson in Houston, Texas.  He was put on a clinical trial and received 14 cycles of chemo.  He is better.

I'm anxious to here how you get along at Mayo's.

Good luck!!!

The Mayo visit went ok.  Dr. Tefferi, who is an expert with MF, said he thought it looked more like ET.  He made this diagnois off the blood work only and didn't have the report back from the bone marrow biospy.  I think the diagnois was a little premature.  Either way he said that his prognoise was great and that he should be around for a long time. 

 That is more then his local dr has ever said on the subject, so that in itself was good to hear.  We are still waiting on confirmation on whether it is MF or ET.