Re: [MOL] Myelo Dysplasia - Anyone!! Can you give me any INFO? [00082] Medicine On Line


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



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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