Home         Forums  

Go Back   Marrowforums > Treatments > Transplants
Register FAQ Search Today's Posts Mark Forums Read

Transplants Bone marrow and stem cell transplantation

Reply
 
Thread Tools Search this Thread
  #1  
Old Fri Jun 6, 2014, 03:42 PM
Grateful1 Grateful1 is offline
Member
 
Join Date: Jun 2014
Location: USA
Posts: 6
Grateful for so many things...

Hello! I've been a Marrowforums "visitor" for over seven years now and I am sincerely grateful to all of you "members" who have unselfishly shared your stories, struggles and triumphs with bone marrow failure disease.

Today I felt strongly compelled to post my story because I wanted everyone to know that there ARE more transplant success stories than it might appear at times here on the forums.

I was initially diagnosed with MDS RCMD (5q-) seven years ago (WBC 2.1, ANC 1.0, RBC 2.1, HGB 7.8, PLT Normal) and after receiving over 100 units of PRBCs, an unsuccessful attempt with Revlimid, and taking Exjade for iron chelation, it was time to at least consider transplant. I was very lucky to not have experienced any serious infections during that time, but when my BMB (I've had 12 to date ) began showing the appearance of Monosomy 7, I knew (that for me) it was transplant time. Was this a HUGE risk and life changing decision for me?...absolutely! but I did not want to wait for things to get worse before we could hopefully go for a potential cure. The search for a suitable donor resulted in none of my 4 tested siblings being a match, and also no match at all was found domestically. In time, an International donor was found (9/10) and I am so grateful for him agreeing to donate his stem cells to help save my life. I asked my doctor (since I was in my late 50's at the time), if I would be receiving a "mini" transplant, his response was "No, not a Mini Transplant...but if a fully myeloblative transplant would be considered an "A", you will be receiving an "A-). My conditioning regime consisted of Busulfan, Fludarabine, Melphalan and GVHD prophylaxis with Prograf, ATG and MMF.

I know that everyone is different and that their transplant experience and outcome might be different as well, but I am here today 3+ years later and I'm most grateful for each and every day. The transplant experience was not easy and I went through some setbacks (Acute GVHD of the upper and lower GI system and a reactivation of the EB virus) but I took it day by day and was able to get through it with the love and support of my wonderful husband, family and friends in addition to my extraordinary medical team.

Today I am off of most of my medication, have received most of my reimmunizations, my CBC steadily remains in the normal range and I am seen by my local Hemo/Onc doctor every 2 months for bloodwork since my immune system is still a bit slow to completely recover. I'm still working on improving my leg strength but otherwise lead a mostly normal life and I will be meeting my donor in a few months which is something that I am extremely excited about! To those of you who might be considering or heading to transplant, my advise is this: don't ever give up because the process is not a "quick fix", you can do it if that is your firm belief just expect some bumps or setbacks along the way, and know that there are many of us here at Marrowforums (and yes, even behind the scenes!) that have successfully traveled the transplant path.

Again, thank you Marrowforums Members (especially you Neil) for providing support to so many of us, especially when we may have needed it the most.

God bless.

Grateful1
Reply With Quote
  #2  
Old Fri Jun 6, 2014, 04:29 PM
bailie bailie is offline
Member
 
Join Date: Dec 2013
Location: McMinnville,OR
Posts: 825
Thank you for taking the time to share. I know you realize how much it helps.
__________________
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.
Reply With Quote
  #3  
Old Sat Jun 7, 2014, 11:52 AM
Whizbang Whizbang is offline
Member
 
Join Date: Aug 2013
Location: Central NJ
Posts: 299
It's great to hear a 3 Year success story... Congrats, and continued progress...

All the best, and may God Bless.
David
__________________
Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10 ; 5.5% blasts down to 3%, now 1% (post BMT)
Reply With Quote
  #4  
Old Wed Jun 11, 2014, 05:57 PM
Scootin102 Scootin102 is offline
Member
 
Join Date: Feb 2014
Location: Southwest VA
Posts: 5
Thanks!

Thank you for sharing your story. As my young adult son is going through his transplant process right now, I find your experience to be very encouraging!
Reply With Quote
  #5  
Old Wed Jun 11, 2014, 06:54 PM
DanL DanL is offline
Member
 
Join Date: Dec 2010
Location: Denver, CO
Posts: 590
Thank you so much for sharing. The success stories are so inspiring. I just passed the first 100 days and am experiencing various forms of gvhd which flares up some days and is easier to deal with on others, but overall feel better each week. It is great to see your success!
__________________
MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
Reply With Quote
  #6  
Old Wed Aug 17, 2016, 02:52 PM
Grateful1 Grateful1 is offline
Member
 
Join Date: Jun 2014
Location: USA
Posts: 6
Smile Update

I thought I would post an update as it has been quite awhile since I first shared my story here on the forums. I am now 5.5 years post Allogeneic MUD SCT (9/10) and 9 years post original diagnosis of low risk MDS with 5q- chromosome abnormality (see my story above). Since my last posting, I have met my international donor (just the nicest person ever!) and we continue to keep in contact. I now see my transplant Doctor once a year and my local Onc/Hem every 4 months whom I saw this morning. I continue to have very stable blood counts with the only issue being low IGG levels and receive an infusion of antibodies if necessary. A year ago I was given the okay to discontinue my remaining medications (Acyclovir and Bactrim), but experienced a couple of infections (oral and upper respiratory) so was put back on them although I am currently reducing the dosage of Acyclovir and we'll see how it goes. I continue to lead a normal life for which I am extremely grateful and I want to give hope and inspiration to those of you considering or going through the transplant journey...

Sending my continued prayers and blessings to you all.

Grateful1
Reply With Quote
  #7  
Old Fri Aug 19, 2016, 08:34 AM
PaulS PaulS is offline
Member
 
Join Date: Sep 2014
Location: New York
Posts: 247
Hi Grateful1 - thanks for sharing your story. It brings hope to everyone seeing someone who has passed through the transplant gauntlet and thrived. I wish you continued health and happiness!
paul
__________________
Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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
Some things to eat to raise my blood numbers? AliceKay1 MDS 2 Fri Sep 29, 2017 01:41 AM
Things getting worse after 6 chemo sessions surabhi MDS 1 Tue Mar 11, 2014 09:17 AM
The simple things... ssdavi71416 AA 1 Mon Jan 14, 2013 01:01 PM
'Good things come to she who waits' Gloria J Tell Your Story 5 Tue Sep 8, 2009 05:44 PM
Wish I had better things to say today. Ger Tell Your Story 3 Thu Jan 31, 2008 11:43 AM


All times are GMT -4. The time now is 07:40 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