My husband was diagnosed with multiple myeloma in May 2015. He did Revlimid, Velcade, and dexamethasone induction, then had an autologous stem cell transplant in October 2015. He started Revlimid maintenance in March 2016; we weren't sure if we were going to do maintenance, and so it didn't begin after the 100 days post- transplant).
After his transplant, he would have periodic bouts of fatigue. He would go for about 3 weeks and then "crash", being bedridden and feeling extremely tired for about 3 days. Then, the cycle would start again. Over the summer he went a long time without the crash.
Now, he seems fatigued all the time, and not feeling good. I think some is depression, but he is a pretty hardy guy. The doctor's answer to the fatigue is to do exercise and move every day. He is still recuperating from the stem cell transplant.
This just seems a little long. Anyone have any thoughts or ideas?
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Re: Constant fatigue post-transplant, during maintenance
Hi Irankin,
EJ has been having trouble with Revlimid, so his oncologist suggested he see a specialist in their practice who was knowledgeable of the side effects from chemo. She reiterated the importance of getting consistent sleep and exercise, but she also suggested that he make sure he gets enough protein with each meal.
The Revlimid seems to mess with his taste buds a bit, so food isn't always appealing. But he thinks protein helps a little.
Lyn
EJ has been having trouble with Revlimid, so his oncologist suggested he see a specialist in their practice who was knowledgeable of the side effects from chemo. She reiterated the importance of getting consistent sleep and exercise, but she also suggested that he make sure he gets enough protein with each meal.
The Revlimid seems to mess with his taste buds a bit, so food isn't always appealing. But he thinks protein helps a little.
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: Constant fatigue post-transplant, during maintenance
It may seem counter-intuitive but when you are tired or fatigued exercise, which feels like the last thing that you want to do, may well be the best medicine. It seems that once you get moving the fatigue can melt away and you feel so much better. Worth a try.
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goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Constant fatigue post-transplant, during maintenance
Hi Irankin,
I am sorry to hear about the problems your husband is experiencing with fatigue. I hope that you are taking care of yourself and getting some rest, etc. I actually saw in a study of allogeneic transplant patients that their caregivers had a worse quality of life than the patient at certain points in the recovery process. I still thank my caregivers for all they did for me.
I have no experience taking Revlimid, but a known side effect of Revlimid is fatigue. Have you discussed a different maintenance drug or schedule with your doctor?
You wrote:
You may want to check at the center you treat at to see if a counselor is available. Depression is not uncommon for cancer patients. The studies on autologous transplant survivors typically show patients returning to baseline quality of life (baseline is how they were prior to the transplant) in 2 to 4 months, and that there is improvement over time. You describe his fatigue symptom as improving and then getting worse (and it sounds like it may be worse now than it was immediately after the transplant). That is not in line with any quality of life study on transplant patients I have seen, or my experience and that of other transplant patients I know. Fatigue can be an issue for transplant survivors, and some patients recover slower than others, but this is the first time I have ever seen or heard of someone showing improvement and than rapid decline as a result of an autologous transplant that was done so long ago.
The other question I would have (which I am not expecting you to answer in a forum) is does he have something that interests him that he looks forward to doing or accomplishing everyday? I have heard it described as regaining your sense of purpose. Hopefully he has done that , but if not, he needs to try or needs to seek a counselor to help him do it.
I hope things improve moving forward and please take care of yourself. Being a caregiver is tough and your husband is lucky to have you.
Mark
I am sorry to hear about the problems your husband is experiencing with fatigue. I hope that you are taking care of yourself and getting some rest, etc. I actually saw in a study of allogeneic transplant patients that their caregivers had a worse quality of life than the patient at certain points in the recovery process. I still thank my caregivers for all they did for me.
I have no experience taking Revlimid, but a known side effect of Revlimid is fatigue. Have you discussed a different maintenance drug or schedule with your doctor?
You wrote:
Over the summer he went a long time without the crash.
Now, he seems fatigued all the time, and not feeling good. I think some is depression, but he is a pretty hardy guy. The doctor's answer to the fatigue is to do exercise and move every day. He is still recuperating from the stem cell transplant.
You may want to check at the center you treat at to see if a counselor is available. Depression is not uncommon for cancer patients. The studies on autologous transplant survivors typically show patients returning to baseline quality of life (baseline is how they were prior to the transplant) in 2 to 4 months, and that there is improvement over time. You describe his fatigue symptom as improving and then getting worse (and it sounds like it may be worse now than it was immediately after the transplant). That is not in line with any quality of life study on transplant patients I have seen, or my experience and that of other transplant patients I know. Fatigue can be an issue for transplant survivors, and some patients recover slower than others, but this is the first time I have ever seen or heard of someone showing improvement and than rapid decline as a result of an autologous transplant that was done so long ago.
The other question I would have (which I am not expecting you to answer in a forum) is does he have something that interests him that he looks forward to doing or accomplishing everyday? I have heard it described as regaining your sense of purpose. Hopefully he has done that , but if not, he needs to try or needs to seek a counselor to help him do it.
I hope things improve moving forward and please take care of yourself. Being a caregiver is tough and your husband is lucky to have you.
Mark
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Mark11
Re: Constant fatigue post-transplant, during maintenance
I had my autologous stem cell transplant (ASCT) in June 2015, and it has only been in the last month or so that I am feeling almost back to my old self – well, the new normal old self.
Looking back, I had a couple of low level upper respiratory issues that put me down for a couple of months at a time, which I think is part and parcel of recovery. It took a lot longer than the doctors at Moffitt first talked about, but in the end they said my recovery was about normal. I think we all want to jump up after the stem cell transplant and go back to the way life was, and I have always made a very bad patient. Thank God my wife got me thru it and still wants me around
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I hate to say hang in there, but that's what I think you have to do. Wait it out, but do look forward to the day you will feel 100% better. I am on Revlimid 5 mg maintenance and I will see how this goes. It's been 7 months and so far not too bad.
When I could finally get my mind to focus, I started reading and writing my thoughts down, and then one day after the last respiratory issue in early August I just started to feel 100% better. It was like a switch.
Looking back, I had a couple of low level upper respiratory issues that put me down for a couple of months at a time, which I think is part and parcel of recovery. It took a lot longer than the doctors at Moffitt first talked about, but in the end they said my recovery was about normal. I think we all want to jump up after the stem cell transplant and go back to the way life was, and I have always made a very bad patient. Thank God my wife got me thru it and still wants me around
.I hate to say hang in there, but that's what I think you have to do. Wait it out, but do look forward to the day you will feel 100% better. I am on Revlimid 5 mg maintenance and I will see how this goes. It's been 7 months and so far not too bad.
When I could finally get my mind to focus, I started reading and writing my thoughts down, and then one day after the last respiratory issue in early August I just started to feel 100% better. It was like a switch.
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bobmc - Name: Bob McLean
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Dec 21 2013
- Age at diagnosis: 62
Re: Constant fatigue post-transplant, during maintenance
Thank you, all, for your thoughts. It has helped.
Re: Constant fatigue post-transplant, during maintenance
I had a good partial response to the ASCT and went on maintenance Revlimid for 2 years. I experienced similar bouts of fatigue, from irritating to occasionally debilitating. I asked to go off and they took me off.
Revlimid held my numbers low and I had almost two more years at low stable numbers. I'm relapsed again but not the run away kinda relapse.
Good luck but my experience would suggest the recovery time was longer for me and definitely expect a new normal! It's a good time treatment wise. The new treatments in the pipeline are very encouraging.
Revlimid held my numbers low and I had almost two more years at low stable numbers. I'm relapsed again but not the run away kinda relapse.
Good luck but my experience would suggest the recovery time was longer for me and definitely expect a new normal! It's a good time treatment wise. The new treatments in the pipeline are very encouraging.
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Canuck Bob - Name: Bob
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb. 2011
- Age at diagnosis: 57
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