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MDS Myelodysplastic syndromes

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Old Tue Nov 19, 2013, 09:03 PM
MaryS MaryS is offline
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Join Date: Nov 2013
Location: Herndon VA my father in New Orleans,La
Posts: 24
My father had decided not to do the clinical trail

After much anxiety and stress and speaking to his oncologist my father has decided not to participate in the clinical trail at MD Anderson. My fathers doc was surprised that they recommended this trail to him. First off the doc told my father that his fibrosis is mild , and second Jakafi is given to patients with enlarged spleen which my father doesn't have yet. The procrit is working for my dad right now. The doc also said that his pt with fibrosis have had it for a long time. So at this time my father will continue on the procrit and monitor blood work. If he needs a bld transfusion he will do that. When the time comes for Vidaza he will start that. The doc said my dad will be able to get Jakafi when he needs it.
We all feel a sense of relieve and peace tonight for this decision. Kate you were right. The decision my father made was the right one for him. We all feel good about it.

One thing I know for sure is that a second opinion is important and essential. It gives you another perspective to make an informed decision about your care. No question is stupid. They are All important! everyone's case is different and unique and what happens to someone does not mean it is going to happen to you . It maybe similar, but not the same.
I pray for strength and peace for you all that you may overcome any challenge that comes your way. You will endure. I am sorry for anyone who has lost a love one to this dx. I hope you get a miracle each day that puts laughter in your soul, and you feel the embrace of those around you . You too will endure. Much hope- Mary
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Mary, daughter / caregiver of Bob age 77; on Oct 1 2013 dx with MDS/MPN overlap +Trisomy. Jak2 at d< 5 blast. , and on March 1 2014 Dx with AITL non Hodgkin's Lymphoma.
Tx: decitabine/prednisone/Jakafi?
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