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 Mon Apr 27, 2015, 08:38 AM
italianburrito italianburrito is offline
Member
 
Join Date: Apr 2015
Location: VB
Posts: 61
Side effects from SCT

Good morning everyone, I have a question for people that have been through a SCT. My dad will eventually be needing a transplant in the near future and was wondering what kind of side effects you are still dealing with. Ultimately I want him to be cured of his MDS, but the numbness and tingling many people experience from this will be heart breaking for him. He is an accomplished and professional accordianist and worry that he wont be able to play his beloved instrument after all this treatment. I have heard using ice packs during in the infusion will help. Will this even be a problem in the future? Did it eventually go away? Thank you in advanced for your great information.
Reply With Quote
  #2  
Old Mon Apr 27, 2015, 11:35 AM
bailie bailie is offline
Member
 
Join Date: Dec 2013
Location: McMinnville,OR
Posts: 825
The stem cell transplant experience is different for most people. The transplant itself is the least of the effects. It is easy to sleep through the whole thing (I did). The chemo before the transplant is difficult. It zaps the energy for many. Then the first 14 days following the transplant a person has little energy and you just want to be still. It is necessary during that time to walk and exercise as much as possible, but you just don't feel like it. Also, it is important to drink a lot of fluids and again you just don't feel like it. For many people, their tastes change and eating become a challenge.

It seems there is no uniform experience after the transplant. Most people spend about 60 days getting their strength back along with their appetite. The SCT is often no choice so you just make the best of it and its challenges. For me, I could have physically handled playing an accordian (if I knew how) after about day 75. But, it is different for every person.

How old is your father? Does he have any other health problems?
__________________
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 Mon Apr 27, 2015, 11:52 AM
italianburrito italianburrito is offline
Member
 
Join Date: Apr 2015
Location: VB
Posts: 61
Quote:
Originally Posted by bailie View Post
The stem cell transplant experience is different for most people. The transplant itself is the least of the effects. It is easy to sleep through the whole thing (I did). The chemo before the transplant is difficult. It zaps the energy for many. Then the first 14 days following the transplant a person has little energy and you just want to be still. It is necessary during that time to walk and exercise as much as possible, but you just don't feel like it. Also, it is important to drink a lot of fluids and again you just don't feel like it. For many people, their tastes change and eating become a challenge.

It seems there is no uniform experience after the transplant. Most people spend about 60 days getting their strength back along with their appetite. The SCT is often no choice so you just make the best of it and its challenges. For me, I could have physically handled playing an accordian (if I knew how) after about day 75. But, it is different for every person.

How old is your father? Does he have any other health problems?

He is 64 years young and he no other health problems. Thats what makes this whole situation frustrating because he just went in for routine labs and found blasts cells in his peripheral blood smear. I have hope that he will be able to play but still concerned about the neuropathy. Have you experienced this? I know that the only option to potentially cure this is through SCT so we have to do what we must do to save his life.
Reply With Quote
  #4  
Old Mon Apr 27, 2015, 03:47 PM
bailie bailie is offline
Member
 
Join Date: Dec 2013
Location: McMinnville,OR
Posts: 825
That was similar to my situation. I felt fine and had Vidaza for eight months to get my blast counts down before the SCT. I felt fine for the eight months and was golfing (walking the six mile course) right up until the week before the SCT.

I have never heard of any neuropathy as being a problem. You have information that I haven't seen. I didn't have any problems from any form of neuropathy.
__________________
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
  #5  
Old Tue Apr 28, 2015, 12:40 AM
Cheryl C Cheryl C is offline
Member
 
Join Date: Dec 2011
Location: Lake Macquarie, Australia
Posts: 843
There are other people on this forum who have problems with neuropathy but not sure whether it was due to the transplant. Maybe search for neuropathy and see what comes up.
__________________
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 Tue Apr 28, 2015, 02:07 PM
johnwc johnwc is offline
Member
 
Join Date: Dec 2013
Location: PORTLAND
Posts: 42
After a year and a half studying Leukemia and having my SCT in early January, I feel this disease has a mind of it's own and there are no pattern of symptoms you can rely on.
I have no GVHD (so far) but some suffer badly.
Blessings, JOHN
__________________
John, 68, Portland, Or. Dx with CMML on 12/1/2013, 3 days before admission for SCT, blasts went to 23%, AML. Did 7+3 chemo regimen. The chemo worked and blasts are 1% and did BMT on 1/1/15.- 12/2/15, ongoing GVHD in eyes. Lung fungus and Bronchiolitis Obliterans (BO).
Reply With Quote
  #7  
Old Thu Apr 30, 2015, 08:47 AM
italianburrito italianburrito is offline
Member
 
Join Date: Apr 2015
Location: VB
Posts: 61
Quote:
Originally Posted by johnwc View Post
After a year and a half studying Leukemia and having my SCT in early January, I feel this disease has a mind of it's own and there are no pattern of symptoms you can rely on.
I have no GVHD (so far) but some suffer badly.
Blessings, JOHN
Yes that is true. Nothing is for certain in this awful disease. Most people probably think that my question was probably selfish because as long as my dad lives that was the greatest gift that can be given to us but his instrument is also a huge part of his life. He has played at my wedding, concert halls, at birthday celebrations with family, and just to see his little granddaughter dance. If he does experience it then this is something we will have to come to terms with but I will be grateful everyday to see him healthier and alive!
Reply With Quote
  #8  
Old Thu Apr 30, 2015, 08:48 AM
italianburrito italianburrito is offline
Member
 
Join Date: Apr 2015
Location: VB
Posts: 61
Quote:
Originally Posted by Cheryl C View Post
There are other people on this forum who have problems with neuropathy but not sure whether it was due to the transplant. Maybe search for neuropathy and see what comes up.
I have done research and nothing has been definitive with this specific side effect. As an onocology nurse, I know neuropathy is one of the top symptoms my patients experience so I assume this might be something HE would have to endure. Our journey has just started so anything can happen at this point...
Reply With Quote
  #9  
Old Thu Apr 30, 2015, 07:48 PM
Cheryl C Cheryl C is offline
Member
 
Join Date: Dec 2011
Location: Lake Macquarie, Australia
Posts: 843
Did you search on this forum? Because there are definitely people who post here with neuropathy.
__________________
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
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
Cyclosporine side effects BobbyJD Drugs and Drug Treatments 5 Tue Jun 24, 2014 01:48 AM
Long Term Side Effects of Vidaza Jill2008 Drugs and Drug Treatments 6 Sun Jun 1, 2014 08:35 PM
Vidaza side effects: enlarged spleen veola Drugs and Drug Treatments 0 Sun Jul 17, 2011 01:54 AM
cyclosporine side effects SNichols Drugs and Drug Treatments 11 Wed Oct 20, 2010 01:43 PM
Results and side effects from Vidaza Zita Desenberg Drugs and Drug Treatments 2 Mon Nov 16, 2009 05:41 PM


All times are GMT -4. The time now is 05:16 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