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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

Recovering full strength after stem cell transplant

by Rory on Mon Feb 05, 2018 5:48 pm

I had a stem cell transplant in September 2017. Everything went well. My numbers are all looking good with the M-spike stable at 2.5 g/l (0.25 g/dL) and blood counts all in the normal range. I feel good too.

I was pretty fit going into the stem cell transplant, having been a lifelong cyclist, and I was back on my bike within a few weeks. So I am officially in remission and hoping for a few years of excellent health.

I am now riding 60+ miles in a day and try to average 150 per week. My problem is that, despite all this good news, I am way down on power and performance compared to pre-myeloma and the transplant.

Am I being unreasonable in expecting to be back to normal so soon? Is there a mechanism which is limiting my strength and power no matter how hard I train?

Rory
Who do you know with myeloma?: Me
When were you/they diagnosed?: Dec2015
Age at diagnosis: 65

Re: Recovering full strength after stem cell transplant

by GoDucks on Tue Feb 06, 2018 3:51 pm

Hi Rory,

I'm not an expert, but I know I've experienced some fairly significant deconditioning and loss of muscle mass while going through treatment and my stem cell transplant in November 2017. I'm approaching my 100 days post transplant and feel great but know I have some work to do if I want to get back to golf and kayaking this summer.

Good for you on the biking and being in such good shape going into your transplant. I think it just takes time, and for me, always longer than I'd like!

GoDucks
Name: GoDucks
Who do you know with myeloma?: me
When were you/they diagnosed?: March, 2017
Age at diagnosis: 61

Re: Recovering full strength after stem cell transplant

by goldmine848 on Tue Feb 06, 2018 8:45 pm

Following transplant I had significant leg soreness and loss of power for at least six months. Eventually, the soreness went away. Hard to say about the power but endurance was back to normal.

goldmine848
Name: Andrew
When were you/they diagnosed?: June 2013
Age at diagnosis: 60

Re: Recovering full strength after stem cell transplant

by stefania888 on Wed Feb 07, 2018 5:52 pm

Not sure what you are on for maintenance, or how long you may have been on it before, but dexamethasone is a corticosteroid. Unlike anabolic steroids, this one is a muscle waster, so that might explain the decrease in power. Less muscle equals less output force, which equals less power.

I personally perceived no problems with soreness or strength post transplant. I held off on regular exercise for about 2 or 3 months except for my exercise bike a few days a week and occasional light weights. What I have noticed since being on dexamethasone is that I cannot get muscle tone. (And I put on weight just looking at food, but that is coming under control.) I don't feel weaker, I don't feel like I need to take it easy and lift less weight, but it's really just like maintaining what I have, so for me, the correlation with the dex makes sense. Can't imagine how bad it would be if I did nothing.

stefania888
Name: Stephanie
Who do you know with myeloma?: Self
When were you/they diagnosed?: July 2016
Age at diagnosis: 30

Re: Recovering full strength after stem cell transplant

by Rory on Sun Feb 11, 2018 11:48 am

This week I may have stumbled across part of the answer. I am just back from a 50-mile ride today and also did a 60 mile ride Thursday. I definitely feel stronger, although this is of course subjective. The only change to my regimen is that one week ago I stopped taking pregabalin (Lyrica, 50 mg daily) because the neuropathy due to Velcade is finally disappearing. One of the reported side effects is muscle weakness, so I am hoping this is the reason for my lack of power. Time will tell, I guess, but is this plausible on such a small dose? The problem is that with the kind of cycling I do, it doesn't take much reduction in power to be immediately, apparent so I hope this will prove to be the cause.

Rory
Who do you know with myeloma?: Me
When were you/they diagnosed?: Dec2015
Age at diagnosis: 65


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