Home         Forums  

Go Back   Marrowforums > Bone Marrow Failure Diseases > MDS
Register FAQ Search Today's Posts Mark Forums Read

MDS Myelodysplastic syndromes

Reply
 
Thread Tools Search this Thread
  #1  
Old Tue Nov 19, 2013, 10:03 PM
MaryS MaryS is offline
Member
 
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
__________________
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?
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
my father at First got TTP and now MDS? Is it possible? Rainbow Star MDS 7 Mon Jan 16, 2017 12:13 PM
Learning About Clinical Trials and Finding Clinical Trials Marrowforums Clinical Trials 0 Wed Jun 3, 2015 06:10 PM
Father with RCMD PolyG MDS 4 Wed Jan 21, 2015 04:33 PM
clinical trail or best standard treatment? rar MDS 1 Thu Mar 27, 2014 12:48 PM
My father keeps coughing and lots of blood in mucus due to very low platete- please h estelle MDS 1 Sat Sep 22, 2012 07:55 PM


All times are GMT -4. The time now is 04:26 AM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright © 2006-2020 Marrowforums.org