[Krysia]

Fatigue & exhaustion after stem cell transplant

by Krysia on Mon Apr 28, 2014 3:37 pm

Hi everyone,

Hope you are all having a good day.

I wonder if anyone here has found an answer to exhaustion. I am a year post stem cell transplant (SCT) and am in remission. My numbers are all great. But, whenever I do anything, I pay for it for days later with terrible fatigue that lasts for days.

I've been to the doctor several times for blood work to see if I'm deficient in anything, and the answer is always the same - all normal. Even checked thyroid. It's good news, I guess. However, it's also frustrating, as there is no answer.

All they say is that, with all I've been through the last two years, and all the meds I'm on, I shouldn't expect to feel normal. I'm not expecting to be as I was, but just going to three stores in one day wears me out.

Would appreciate any suggestions.

Thanks

[Courtney Pierce]

Re: Fatigue & exhaustion after stem cell transplant

by Courtney Pierce on Tue Apr 29, 2014 3:02 pm

I was diagnosed in 2011 and had my stem cell transplant that same year. I have been in remission ever since, but here are some of my continuous symptoms: Fatigue, tightness of the muscle and weakness.

I take 5 mg of Revlimid. I think we are going to have to learn to live with some of these symptoms. Your body is still recovering and your immune system is still compromised.

Hang in there. It WILL get better. May God bless you.

[DanielR]

Re: Fatigue & exhaustion after stem cell transplant

by DanielR on Tue Apr 29, 2014 3:46 pm

Krysia,

I too had a transplant 1 year ago. Despite the initial extremely dire diagnosis (none of my doctors expected me to live beyond February of last year), I have responded amazingly well. So much so that, as of the 1st of March of this year, I was taken off Velcade, the last of my myeloma-related meds.

Like you, my numbers are all great. In fact, the only thing that's not within a normal range is my RBC, and even it continues to improve.Yet, also like you, it takes very little to completely exhaust me. The few times that I've put together a couple of consecutive days of feeling good, I would then be essentially bedridden for the next three days.

My doctors have no explanation other than that my body has been through a lot and my experience is not unusual. This is far from satisfying. I have always been very active and health conscious, but nothing I have learned over the years to take care of myself seems to help -- or maybe it has, and I'd be much worse off otherwise ...

So while I don't have anything to offer you that might prove helpful, I can certainly commiserate with you.

Aloha
Daniel

[Norm]

Re: Fatigue & exhaustion after stem cell transplant

by Norm on Tue Apr 29, 2014 4:15 pm

Fatigue can be a product of any chemo drug you have taken, or are now taking, or whatever myeloma that is still there but can't be measured.

I had a stem cell transplant three years ago and am taking 5mg Revlimid maintenance and have a mild fatigue, so it has improved a lot, but still continues. I try to pace my activities to allow rest periods, take a daily afternoon nap and exercise.

So I'd say listen to your body, give it rest when needed, build in an exercise routine if you haven't already done so, eat healthy, pace yourself and give yourself permission to take care of yourself first.

Good luck!

[Krysia]

Re: Fatigue & exhaustion after stem cell transplant

by Krysia on Wed Apr 30, 2014 6:56 pm

Hi there

So sorry I haven't responded sooner - was going to say I was too tired - lol! Thank you for your camaraderie in this. I guess it's just time that's needed for all of this to get better (and I have to stop beating myself up about being unable to achieve all that I want to.)

Hope you all have a good Wednesday, Thursday, Friday etc.

Hugs to all
Krysia

[Tom184]

Re: Fatigue & exhaustion after stem cell transplant

by Tom184 on Fri May 02, 2014 4:54 pm

I had an auto stem cell transplant in August 2011. After the transplant, I was placed on Revlimid, 10 mg a day, three weeks on and one week off. It made me overly fatigued to the point where I was sleeping 11 hours a day. We soon cut back to 10 mg, every other day, and that helped significantly. Not to say that I do not need my daily nap, but I am much less fatigued on the every other day schedule for the medication.

Perhaps you want to talk to your doctor about cutting back on your maintenance medication if he or she feels it is safe. My blood work continues to be good,and I remain in remission.

Best of luck to you,
Tom

[Krysia]

Re: Fatigue & exhaustion after stem cell transplant

by Krysia on Fri May 02, 2014 6:34 pm

Hi Tom

I'm only on 5mg Revlimid. Perhaps I may try every other day - that's a good idea. Will talk to doctor on Friday.

Thanks & keep well,
Krysia

[darnold]

Re: Fatigue & exhaustion after stem cell transplant

by darnold on Sun May 04, 2014 4:29 pm

Hi Krysia. I'm four years out from my SCT and still have chronic fatigue. I was on Revlimid as a maintenance drug, which beat up my blood counts, so I knew that was part of the problem. However, I've been off of Revlimid -- and on no other meds -- for more than an year. All of my counts are on the low side of normal.

I'm able to work a 40 hour week, but teleworking 2 - 3 days helps because I can sleep an hour longer on those days. I've had to accept that this is just my new normal. I take my oncologist's advice and listen to my body. This means I usually have a real Sabbath every weekend. It's better than the alternatives!

[Wayne K]

Re: Fatigue & exhaustion after stem cell transplant

by Wayne K on Mon May 05, 2014 11:27 am

Krysia you don't give your age and that is another part of the equation. I'm 4 years from my stem cell transplant and have just started a Revlimid regimen to combat a protein rise. I'm very aware of the fact that it does affect my overall energy level. I have also started Zometa, and the 2 combined drop my energy to a very low level.

I also have to point out, though, that at 75 I was already in an energy tailspin.