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 Thu Aug 21, 2014, 12:36 PM
DanL DanL is offline
Member
 
Join Date: Dec 2010
Location: Denver, CO
Posts: 590
Possible Relapse

Due to dropping blood counts, my doctor performed a biopsy at about day 150 instead of the normal 180. 1 of the 21 cells karyotyped had a few different chromosomal problems - +4, +8, +12, +19, +20 I think. The other cells were normal, but as it would appear, this means either that these were missed in prior biopsies due to sampling, or that the MDS clone has returned. I still have GVHD which we are treating, and will begin photopheresis next week to work on the GVHD while weaning me off of prednisone.

I started with Vidaza on 8/18 and will probably be on it for some time. At this point, we are not looking at DLI or re-transplant as I don't have any marrow blasts, there is tri-lineage maturation without dyspoeisis, but there is the chromosome damage. the hope is that the vidaza will give my donor's marrow enough of a boost to enhance the graft versus mds effect. I am still showing 100% donor in the marrow and peripheral blood.

I view this as a bump in the road and feel fortunate that we may have caught this relapse really early in the process.
__________________
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
  #2  
Old Thu Aug 21, 2014, 02:06 PM
Whizbang Whizbang is offline
Member
 
Join Date: Aug 2013
Location: Central NJ
Posts: 299
Dan,

Keep your spirits up (stay positive), this to shall pass... Hope they can find the right mix to get you back on track, which I'm sure they will...

Too early to say relapse, just a bump in the road that needs adjusting...

All the Best, and May God Bless...
__________________
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
  #3  
Old Fri Aug 22, 2014, 05:50 AM
Cheryl C Cheryl C is offline
Member
 
Join Date: Dec 2011
Location: Lake Macquarie, Australia
Posts: 843
I like your positive spirit, DanL. Thinking of you and all the other forum members who are battling post-transplant issues.
__________________
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
  #4  
Old Sat Aug 23, 2014, 02:47 PM
katgio50 katgio50 is offline
Member
 
Join Date: May 2012
Location: Venice,FL
Posts: 34
Good luck Dan. My husband is also taking Vidaza due to relapse. He was still 100% donor in the marrow, but not the blood and he had 5-8% blasts. He is having a hard time with his counts, but we are hopeful the Vidaza will work.
Reply With Quote
  #5  
Old Fri Feb 27, 2015, 01:11 AM
DanL DanL is offline
Member
 
Join Date: Dec 2010
Location: Denver, CO
Posts: 590
1 year post transplant today - update

Today was my 1 year re-birthday. I almost forgot entirely to celebrate, but did make it out to dinner tonight.

Since the last update about possible relapse, I have completed 6 cycles of Vidaza, and 3 days of anti-gvhd treatement with Rituxan, as well as a bunch of other drug changes from tacrolimus, sirolimus, prednisone and hydrocortisone. The good news is that I have had two biopsies since August that have come back with normal cytogenetics, normal blast population, and steadier blood counts. I have remained transfusion independent since leaving the hospital.

My current regimen includes photopheresis, lower dose steroids, tacrolimus, and Rituxan. We are working on reducing immune suppression overall, which is what the Rituxan is all about. Overall, doing pretty well with all of the changes. Some of the predictable issues - I think that I have avascular necrosis once again and will be going in to see the orthopedic surgeon again tomorrow. This is probably the result of corticosteroid use, but the option is GVHD that can run out of control - hips are easier to replace than rampant GVHD is to cure, so a little pain and potential surgery in the future are acceptable.

The photopheresis along with the prednisone and Rituxan seem to be doing a nice job of eliminating skin and gut GVHD as my symptoms have improved. For the first time in a long time, my arms, face and neck have normal color to them - it does not look like I have been exposed to the heat lamps for too many hours - good progress. The doctor has been working to get me away from prednisone for some time and we have begun yet another taper. My body has held up well in terms of liver enzymes, kidney functions, and chemistries, but long-term toxicity is always the concern.

As Bailie has said in the past, if I had to do this over again, I would. It has been the right decision for me, and I still believe strongly in the team of doctors that I have, that the outcome will be the best that was available, and that despite the bumps in the road, that transplant was my best option. I won't say that any of it has been easy or that it is a smooth road, but a road without bumps seems boring.

Thank you all for being available on the forums for the past several years of this journey. I look forward to hearing more success from all of you in the coming year.
__________________
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.

Last edited by DanL : Fri Feb 27, 2015 at 01:12 AM. Reason: incomplete
Reply With Quote
  #6  
Old Fri Feb 27, 2015, 02:37 AM
JordanN JordanN is offline
Member
 
Join Date: Nov 2014
Location: California
Posts: 59
Happy Re-Birthday!

Dear DanL,

Congratulations on your one year re-birthday! I'm so happy to hear that you are doing well and having success with treating the many issues that you have had to fight post-transplant! It is wonderful that you feel so strongly that you made the right treatment decisions for you - I think that can make it easier to endure the bumps and hurdles when you truly believe you did what was best for you!

When my dad was first diagnosed with MDS, I was upset that he was not eligible for a transplant as he was a very active 80 year old with no other medical issues, and it seemed as though he might do as well as patients who are younger. However, after seeing how much low-dose Vidaza affected him and hearing about all the realities of the transplant process, I am glad he did not have to make the choice to try a transplant. I think it would have made things much harder (or worse) for him. I truly admire all of you that have had to make that very scary choice of trying a transplant with all of its risks and long-term issues or living with a disease that can turn on you at any moment. You and all the other on this forum are incredibly courageous people!

So, congratulations and here's to many more happy re-birthdays for you to enjoy!
Reply With Quote
  #7  
Old Fri Feb 27, 2015, 07:09 AM
SLB SLB is offline
Member
 
Join Date: Mar 2012
Location: Brisbane, Queensland, Australia
Posts: 130
Happy re-birthday Dan! Sounds like you have had a busy year! Glad things are looking up and all your counts are good. Keep fighting the good fight... Congrats.
__________________
Sharnie, 37yo, dx Mar 2012 RAEB II 13% blasts. 8 months of Vidaza. Transformed to AML in Nov 2012, induction chemo, no remission. 2nd lot of chemo, remission achieved. SCT with 8/10 match, Mar 2013.
Reply With Quote
  #8  
Old Fri Feb 27, 2015, 06:33 PM
bailie bailie is offline
Member
 
Join Date: Dec 2013
Location: McMinnville,OR
Posts: 825
Dan, that's great! I was thinking you were getting close. Looking forward to seeing Year #2 for you.
__________________
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
  #9  
Old Fri Feb 27, 2015, 06:54 PM
PaulS PaulS is offline
Member
 
Join Date: Sep 2014
Location: New York
Posts: 247
Congratulations - hope the road gets smoother.
__________________
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
  #10  
Old Fri Feb 27, 2015, 11:56 PM
Cheryl C Cheryl C is offline
Member
 
Join Date: Dec 2011
Location: Lake Macquarie, Australia
Posts: 843
Wonderful news Dan - so glad to read that things are improving and that you are finding that in spite the difficult patches it's all been worthwhile.
__________________
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
  #11  
Old Sat Feb 28, 2015, 11:53 AM
Bhutt Bhutt is offline
Member
 
Join Date: Apr 2013
Location: Canada
Posts: 44
Happy first birthday. Wishing you continued success with everything.

Blair
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
Azacitidine for treatment of imminent relapse in MDS or AML patients Whizbang MDS 5 Sat May 17, 2014 11:01 AM
pred/cyclosporine after relapse 3blankets AA 8 Wed Jun 22, 2011 02:51 AM
Help me!Isn't it too early to relapse?? mnsnyl AA 5 Thu Sep 23, 2010 01:33 PM
New member of the relapse club KimO AA 5 Fri Sep 3, 2010 05:49 AM
BMT Relapse after 10 years Mary D. Questions and Answers 4 Sun Dec 30, 2007 10:03 PM


All times are GMT -4. The time now is 07:48 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