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 Wed Feb 8, 2017, 09:27 AM
steve_ky steve_ky is offline
Member
 
Join Date: Jun 2014
Location: Kentucky
Posts: 33
Unhappy My Final Post

My father Phillip passed away yesterday in the hospital at the age of 75. His MDS progressed to AML in August of 2017. The man fought up until the last hour of his life. Blood transfusions and antibiotics bought him 2.5 years of extended life. However, hope was lost once the ARA-c and Hydrea medications failed to control his white blood cell count.

Hindsight indicates that we should have started treatment with an MDS center of excellence. I believe his condition deteriorated after each attempt with the hypomethylating agents, because additional gene mutations were discovered after each round. Instead, we bounced around to various local/regional centers and there was little that could be done due to his age and weakness.

I pray mankind will discover a cure for this disease soon. Targeted therapy looks promising. God bless this audience for your warm and thoughtful contributions to both patients and caregivers.
Reply With Quote
  #2  
Old Wed Feb 8, 2017, 01:06 PM
bailie bailie is offline
Member
 
Join Date: Dec 2013
Location: McMinnville,OR
Posts: 825
We are very sorry Steve. Thank you for your thoughts. Everything that you and your Dad have contributed have special meaning for all of us. This is such a relentless disease. Please feel free to come back to us if you think of anything additional. You were a terrific asset for your father.
__________________
age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.

Last edited by bailie : Wed Feb 8, 2017 at 10:31 PM.
Reply With Quote
  #3  
Old Wed Feb 8, 2017, 11:51 PM
Neil Cuadra Neil Cuadra is offline
Owner
 
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,556
Steve,

We've followed your tough up-and-down battle all this time, and we know that you were always there for your father. We're sure he appreciated it.

My wife and I offer our sympathies to you and your family.
Reply With Quote
  #4  
Old Thu Feb 9, 2017, 07:53 PM
maggiemag maggiemag is offline
Member
 
Join Date: Sep 2012
Location: Cincinnati, OH - United States
Posts: 92
Steve, please let me offer my condolences on the loss of your father. It was a long fight, but I am certain he knew how much you cared. May a cure be found, and soon.
Margaret
__________________
Margaret, age 68, dx MDS 5 q- 5/09- now RCMD; also MGUS. TP53 and TET2 mutations
Reply With Quote
  #5  
Old Thu Feb 9, 2017, 07:58 PM
Cheryl C Cheryl C is offline
Member
 
Join Date: Dec 2011
Location: Lake Macquarie, Australia
Posts: 843
My sincere sympathy to you and your family Steve, and all those who knew and loved your father. Thank you for sharing his story with us through the years.
__________________
Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
Reply With Quote
  #6  
Old Sat Feb 11, 2017, 09:50 PM
Emily A Emily A is offline
Member
 
Join Date: Feb 2017
Location: Burnet,Texas USA
Posts: 1
Steve,

I'm a newly diagnosed MDS patient and it's so sad to read of your loss. It sounds like you were a great caregiver. It's just a cruddy disease.

Best regards,
Emily
__________________
Emily
MDS, Sjogren's, Hashimoto's, Neuropathy
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
Recently Diagnosed with Pure Red Cell Aplasia bachgalupe Bone Marrow Failure 14 Sat Aug 13, 2016 01:05 AM
Post Transplant Meals Kari M Transplants 5 Fri Mar 8, 2013 06:42 PM
Post Transplant donna j. Transplants 3 Tue May 15, 2012 11:32 PM
Day +11 post BMT Jen B Pediatrics 49 Mon Sep 20, 2010 10:26 PM


All times are GMT -4. The time now is 02:30 PM.


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