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Myelofibrosis

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newwife06
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Subject: RE: Myelofibrosis
Date: 02/25/2008

 

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

 

Messages History for "Myelofibrosis"

  1. Myelofibrosis
  2. RE: Myelofibrosis
  3. RE: Myelofibrosis
  4. RE: Myelofibrosis
  5. RE: Myelofibrosis
  6. RE: Myelofibrosis
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