myelodysplastic syndrome aka preleukemia success stories????

My mother (in her 60s) was diagnosed with myelodysplastic syndrome aka
preleukemia last year. When she first went into the hospital for
being tired and was then diagnosed it took about a month for her to
get her blood levels acceptable enough to be discharged from the
hospital. Then she went back to work and still gets blood every 2
weeks or so. She is having trouble finding anyone with
myelodysplastic syndrome aka preleukemia that didn't end up with full
blown cancer or dying. I am sure there must be a support group online
or something I can look at for examples of people who found ways to
live with this disease. I just haven't had any luck finding one.

If anyone can share any stories of survival with myelodysplastic
syndrome aka preleukemia I would greatly appreciate it and pass them
along to my mother who is very pessimistic.

Thanks - Robb

Mic wrote:

> My mother (in her 60s) was diagnosed with myelodysplastic syndrome aka
> preleukemia last year. When she first went into the hospital for
> being tired and was then diagnosed it took about a month for her to
> get her blood levels acceptable enough to be discharged from the
> hospital. Then she went back to work and still gets blood every 2
> weeks or so. She is having trouble finding anyone with
> myelodysplastic syndrome aka preleukemia that didn't end up with full
> blown cancer or dying. I am sure there must be a support group online
> or something I can look at for examples of people who found ways to
> live with this disease. I just haven't had any luck finding one.
>
> If anyone can share any stories of survival with myelodysplastic
> syndrome aka preleukemia I would greatly appreciate it and pass them
> along to my mother who is very pessimistic.
>
> Thanks - Robb

There's almost 3,000 subscribers on the ACOR MPD support list here
* listserv.acor.org/archives/mpd-net.html
Just follow the instructions to "join".
They will contact you.
Hope this helps in your search.
J

On May 2, 12:15 pm, Mic <RobbMic...@gmail . com > wrote:
> My mother (in her 60s) was diagnosed withmyelodysplasticsyndromeaka
> preleukemia last year.  When she first went into the hospital for
> being tired and was then diagnosed it took about a month for her to
> get her blood levels acceptable enough to be discharged from the
> hospital.  Then she went back to work and still gets blood every 2
> weeks or so.  She is having trouble finding anyone withmyelodysplasticsy=
ndromeaka preleukemia that didn't end up with full
> blown cancer or dying.  I am sure there must be a support group online
> or something I can look at for examples of people who found ways to
> live with this disease.  I just haven't had any luck finding one.
>
> If anyone can share any stories of survival withmyelodysplasticsyndromeaka=
preleukemia I would greatly appreciate it and pass them
> along to my mother who is very pessimistic.
>
> Thanks - Robb

Hi Robb,
Sorry about your Mother. My Mother was also diagnosed with MDS
(myelodysplastic syndrome) in May 2006. She was told she would need a
bone marrow transplant. The cause of the MDS disease was the chemo
treatment from her non-hodgkins lymphoma cancer.
The doctor started getting her prepared for the bone marrow transplant
by giving her Revlimid - another form of chemo to prepare her for the
transplant. If you look up Revlimid - you will see many rewarding
success stories from people with MDS - most go into remission with
this powerful drug. Some do not ever end up needing the bone marrow
transplant. There is another similar drug to Revlimid but the name
escapes me at the moment. My Mom had a medical accident, in which none
of the doctors diagnosed her correctly. A neurologist conclusion by
exclusion was that she developed a rare disease in which she would
not survive longer than 1 year. She is still here and her blood
levels are good though we had quite the scare. At this point she will
not need a bone marrow transplant and the MDS is in remission. This
long ongoing saga through its ups and downs ends with positive
conclusion.
Best of luck!