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  #1  
Old Mon Apr 27, 2015, 08:38 AM
italianburrito italianburrito is offline
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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.
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  #2  
Old Mon Apr 27, 2015, 11:35 AM
bailie bailie is offline
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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?
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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.
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  #3  
Old Mon Apr 27, 2015, 11:52 AM
italianburrito italianburrito is offline
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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.
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  #4  
Old Mon Apr 27, 2015, 03:47 PM
bailie bailie is offline
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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.
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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.
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  #5  
Old Tue Apr 28, 2015, 12:40 AM
Cheryl C Cheryl C is offline
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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.
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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.
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  #6  
Old Tue Apr 28, 2015, 02:07 PM
johnwc johnwc is offline
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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
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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).
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  #7  
Old Thu Apr 30, 2015, 08:47 AM
italianburrito italianburrito is offline
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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!
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  #8  
Old Thu Apr 30, 2015, 08:48 AM
italianburrito italianburrito is offline
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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...
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  #9  
Old Thu Apr 30, 2015, 07:48 PM
Cheryl C Cheryl C is offline
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Did you search on this forum? Because there are definitely people who post here with neuropathy.
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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.
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