Re: [MOL] Myelo Dysplasia - Anyone!! Can you give me any INFO? [00409] Medicine On Line


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Re: [MOL] Myelo Dysplasia - Anyone!! Can you give me any INFO?



Pauli and Tonia;
    This is what this forum is all about isn't it?  I am so elated that you have
someone to help you Pauli... Gosh Tonia you are so strong!!!  Best wishes and
prayers for both of you....Beav

TON1213@aol.com wrote:

> Pauli-
>
> I have to make this brief because I am short on time right now.  I will reply
> a more detailed one later -- maybe tomorrow.  My name is Tonia and I live in
> Michigan.  I am a special needs school teacher by day and an AML researcher
> by night.  My information that I will pass on to you is based on my 5 months
> of research, my dads doctors and many phone call made.  Please keep in mind
> I, like you, am just searching for anything to help my dad.  My dad is 68 had
> myleodysplasia (MDS)which transformed to acute myleogenous leukemia (AML).
> He was diagnosed April 2000.
>
> You have so many questions that I too had.  First off, the symptoms he is
> experiencing with chemo are all common -- but scary just the same-His WBC is
> low but that will come up.  Typically, your counts are not effected by the
> chemo for 10 to 14 days.  He is right on track.  Becoming neutrapenic IS
> expected, if he doesn't, chemo was not doing it's job.  The WBC needs to be
> over 1000 for his immune system to start combating infection.  My dad is
> currently at the same as your dad.  He is on day 13 after a stem cell
> transplant.
>
> Think of your dads counts as the Dow Jones average.  Stocks go up and down
> without any notice or logic.  So do a patients counts after chemo.  They will
> come up again.  If the doctors feel the need to help boost his counts, they
> will start giving him neupagin(not spelled correctly) to "trick the white
> blood cells WBC into start producing again. This entire process is very long
> and stressful.  Stay focused on the positive and never give up hope.  Always
> challenge the doctors with questions and why they are treating him as they
> do.
>
> I have lots of phone numbers and websites for you.  First, please give me
> more info.  Where are you located, does your dad have blasts?  Approximately
> 30% of all MDS patients transform to AML.  Unfortunately our dads are in that
> statistic.
>
> By the way, we were told dad would not live to see the Fall   WRONG, that he
> would not be eligible for a transplant WRONG.
>
> Stay focused like you are and keep searching for answers.  I hope I can be of
> some help.
>
> Your friend,
>
> Tonia
>
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