myelofibrosis: anyone heart of it?

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hasselius - 22 Apr 2004 09:23 GMT

Hi,

Yesterday i got the shattering news of my specialist that i seem to have
myelofibrosis, or allso known as MMM (Myelofibrosis with myeloid
metaplasia). Is anyone acquainted with the disease?

frank.

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J - 22 Apr 2004 10:45 GMT

> Hi,
>
[quoted text clipped - 3 lines]
>
> frank.

Hello Frank, Perhaps Steph is.
Have you had a bone marrow biopsy?

From the Mayo web site....
What is Myelofibrosis with Myeloid Metaplasia?
Myelofibrosis with myeloid metaplasia is a chronic form of leukemia. It
causes secondary scarring or fibrosis in the bone marrow. The disease,
also known as agnogenic myeloid metaplasia, may arise by itself or evolve
from other myeloproliferative diseases (diseases that cause overproduction
of blood cells in the bone marrow) such as essential thrombocythemia or
polycythemia vera. Typically people develop MMM around age 60. The disease
can lead to progressive bone marrow dysfunction and anemia, and decreases in
other key blood cells such as infection-fighting white blood cells and
blood-clotting platelets.
Symptoms of myelofibrosis with myeloid metaplasia (MMM) depend on the type
of blood cell affected. Problems with red blood cells may put patients at
risk for symptoms of anemia such as shortness of breath and fatigue.
Decreases in the white blood cell count can depress the immune system and
increase risks of infection. Decreases in platelets can lead to bleeding.
Patients may develop enlarged spleens (splenomegaly) from the leukemia
like cells produced by marrow that accumulate in the body. Patients can
also experience fatigue, night sweats, weight loss and bone pain.
No known drugs can cure myelofibrosis. However, drugs can alleviate some
symptoms of the disorder. Bone marrow transplantation can potentially cure
some people but its serious side effects make it too risky for the majority
of myelofibrosis patients.[end quoted text]
J

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lov2laf - 30 Oct 2008 18:37 GMT

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Since 1994, our MPD-SUPPORT web site and free support email list offers
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--

>> Hi,
>>
[quoted text clipped - 29 lines]
>of myelofibrosis patients.[end quoted text]
>J

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J - 23 Apr 2004 09:58 GMT

> Hi,
>
[quoted text clipped - 3 lines]
>
> frank.

Hello Frank,
You may connect with others by two means

1) http://www.acor.org The ACOR mailing lists - look under "m" or
http://www.acor.org/mailing.html?l=m
MPD-NET Myeloproliferative Disorders Support List (2063 subscribers)

and/or

2)
Myeloproliferative Mailing List (MPD-SUPPORT-L)
3706 North Roosevelt Blvd.
Key West FL 44030
Phone #: 305-295-4444
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e-mail: mensabrain@aol.com
Home page: http://members.aol.com/mpdsupport (instructions on how to
subscribe are here)

Hope this helps and best wishes,
J

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