I know this has been discussed many times before, but I just wanted to vent, I guess.
I am 9 months post stem cell transplant (SCT). I have been in stringent complete response (sCR) for a while. Had oligoclonal banding until recently. I am IgA kappa light chain with chromosome 1 addition. Because of the abnormal cytogenetics, I am on Velcade every other week (with 12 mg IV dex), and 5 mg Revlimid on a 21 day cycle since March.
Last month, I developed a rash, which did clear on my week off from Revlimid. So, I would assume that to have been the cause. I have GI issues, too. Alternating constipation / diarrhea, which makes it difficult to treat because everyday is different! I have been dealing with these side effects pretty well, and really want to stay on the drugs to hopefully prolong my remission.
However, now I am getting some significant fatigue. I began exercising a couple of weeks ago, but have found that I didn't have the energy to continue, even though I know I should. I work 4 days a week, have two 20-somethings at home (who are not problematic), plus my oldest child ... my husband! I try to pace myself, but sometimes, WOW, this fatigue hits like a ton of bricks!
I have read about this, but I didn't think it would happen to me because of the low dose of Revlimid I am on. I am slightly anemic – hemoglobin 10.7, white count 5 ish. I notice that my alkaline phosphatase has been trending up over the last few months. Now it is at 101. Other liver markers are normal.
Is this just par for the course? I am supposed to stay on this regimen of drugs for 3 years, if no relapse occurs. Is there anything I can do to counter the fatigue?
I don't sleep great, either, which I'm sure doesn't help. Also, sometimes feel weepy with the fatigue.
Don't get me wrong, I am grateful that my response has been good. But the old saw ... QOL.
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Re: Post transplant chemo blues
Hi Ellen,
Congratulations on reaching a stringent complete response. That's great!
For your GI issues, you may want to check out Andrew Gordon's column a few months ago, in which he discusses how he dealt with similar issues he was having:
https://myelomabeacon.org/headline/2015/05/01/myeloma-lessons-a-dirty-little-story/
He ended up taking an approach to the problem which is based on some research findings discussed in a Beacon article from last year, and the approach apparently helped him. I think others also have posted here in the forum that they've found the approach helpful, as well, although there have been one or two people who wrote that it didn't work for them.
In my experience, diarrhea often leads to exactly the combined problem that you mentioned -- diarrhea AND constipation -- as the digestive system never really reaches an equilibrium.
As for the fatigue, I'm sure the Velcade and Revlimid are contributing to it, but I wonder if it's also the result of your sleep being disrupted by the dex. Also, for me personally, GI issues also tend to give me fatigue, but I can't say how universal that is.
In any case, it's great that your treatment regimen has worked so well for you, and I hope you find solutions for the remaining issues you're having. Good luck!
Congratulations on reaching a stringent complete response. That's great!
For your GI issues, you may want to check out Andrew Gordon's column a few months ago, in which he discusses how he dealt with similar issues he was having:
https://myelomabeacon.org/headline/2015/05/01/myeloma-lessons-a-dirty-little-story/
He ended up taking an approach to the problem which is based on some research findings discussed in a Beacon article from last year, and the approach apparently helped him. I think others also have posted here in the forum that they've found the approach helpful, as well, although there have been one or two people who wrote that it didn't work for them.
In my experience, diarrhea often leads to exactly the combined problem that you mentioned -- diarrhea AND constipation -- as the digestive system never really reaches an equilibrium.
As for the fatigue, I'm sure the Velcade and Revlimid are contributing to it, but I wonder if it's also the result of your sleep being disrupted by the dex. Also, for me personally, GI issues also tend to give me fatigue, but I can't say how universal that is.
In any case, it's great that your treatment regimen has worked so well for you, and I hope you find solutions for the remaining issues you're having. Good luck!
Re: Post transplant chemo blues
Hello Ellen:
I read your post and I can tell you without going into a lot of details that your family situation, as well as your multiple myeloma situation, may be similar to ours. After contemplating what you posted, I wanted to tell you that we requested, and got approved for my wife physical therapy. I am thinking that might be helpful in your case. In the case of my wife, it does provide a significant amount of support, both physically, and mentally.
You mentioned that you tried to exercise. That tells me you have the desire, but you found it too hard. You just recently had an ASCT. EVERYTHING IS HARD, not surprisingly.
Not all physical therapist's are familiar with the issues associated with ACST, but some are. The area of PT that relates to ASCT/multiple myeloma recovery is called "general reconditioning". It slowly builds up core strength and strength in arms and lets. It should include stretching, and possibly appropriate massages to the spine and other effected areas. The goal would be to get you back to the "old normal" (keeping in mind that all of us are getting older).
If you find a good PT knowledgeable in this, I think it might help.
Then, one more thing, after you find the good PT, and after you figure out it works for you, take your kids and your husband to the PT session so that they can learn how to help you do the exercises at home. . Good luck
I read your post and I can tell you without going into a lot of details that your family situation, as well as your multiple myeloma situation, may be similar to ours. After contemplating what you posted, I wanted to tell you that we requested, and got approved for my wife physical therapy. I am thinking that might be helpful in your case. In the case of my wife, it does provide a significant amount of support, both physically, and mentally.
You mentioned that you tried to exercise. That tells me you have the desire, but you found it too hard. You just recently had an ASCT. EVERYTHING IS HARD, not surprisingly.
Not all physical therapist's are familiar with the issues associated with ACST, but some are. The area of PT that relates to ASCT/multiple myeloma recovery is called "general reconditioning". It slowly builds up core strength and strength in arms and lets. It should include stretching, and possibly appropriate massages to the spine and other effected areas. The goal would be to get you back to the "old normal" (keeping in mind that all of us are getting older).
If you find a good PT knowledgeable in this, I think it might help.
Then, one more thing, after you find the good PT, and after you figure out it works for you, take your kids and your husband to the PT session so that they can learn how to help you do the exercises at home. . Good luck
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JPC - Name: JPC
Re: Post transplant chemo blues
I was on Revlimid for almost three years, and recently finished maintenance so I'm drug free at the moment. I was never able to get the GI issues resolved. I found dairy made it worse and the use of probiotics helped. Fatigue was a huge problem for me and like you I had trouble sleeping.
They put me on a old anti-depressant called trazodone. It has the bad side effect of making you tired. I took 10 0mg at night and started sleeping much better. My schedule was to take an hour long nap every afternoon, trazodone at night and the fatigue was much better.
I was on 15 mg Revlimid daily during my maintenance period, no dex, no Velcade.
Good luck to you.
They put me on a old anti-depressant called trazodone. It has the bad side effect of making you tired. I took 10 0mg at night and started sleeping much better. My schedule was to take an hour long nap every afternoon, trazodone at night and the fatigue was much better.
I was on 15 mg Revlimid daily during my maintenance period, no dex, no Velcade.
Good luck to you.
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JBarnes - Name: Jerry Barnes
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Aug 17, 2012
- Age at diagnosis: 54
Re: Post transplant chemo blues
Ellen-
JPC's suggestion that you get a referral for PT is a good one. When looking for a PT who might be best for you ask if the clinic has a cancer fatigue program, or anyone who really is knowledgeable in working with people with cancer. If you have bone lesions and there isn't anyone on staff who is familiar with working with people with cancer ask about whether there is someone who normally works with people who have been diagnosed with osteoporosis.
Another suggestion is to call the YMCA and see if they have the Livestrong program there. It is free to people who have cancer. From what others have said previously on the Forum they have found it very helpful in helping them to learn how to exercise safely. It is important that you start slowly and gradually build up the time and difficulty of your exercise program. Don't go by what you were able to do prior to myeloma.
Being so soon out of your transplant, on Revlimid and Velcade, having GI problems and taking care of a family, and not sleeping well will all cause fatigue. Rest when you feel the need. Be sure to talk with your oncologist and/or nurse about the GI problems. Take care of yourself.
Hopefully you will begin to feel better before too long. It was a good year before I felt like me after my transplant and I wasn't on any maintenance drugs.
Nancy in Phila
JPC's suggestion that you get a referral for PT is a good one. When looking for a PT who might be best for you ask if the clinic has a cancer fatigue program, or anyone who really is knowledgeable in working with people with cancer. If you have bone lesions and there isn't anyone on staff who is familiar with working with people with cancer ask about whether there is someone who normally works with people who have been diagnosed with osteoporosis.
Another suggestion is to call the YMCA and see if they have the Livestrong program there. It is free to people who have cancer. From what others have said previously on the Forum they have found it very helpful in helping them to learn how to exercise safely. It is important that you start slowly and gradually build up the time and difficulty of your exercise program. Don't go by what you were able to do prior to myeloma.
Being so soon out of your transplant, on Revlimid and Velcade, having GI problems and taking care of a family, and not sleeping well will all cause fatigue. Rest when you feel the need. Be sure to talk with your oncologist and/or nurse about the GI problems. Take care of yourself.
Hopefully you will begin to feel better before too long. It was a good year before I felt like me after my transplant and I wasn't on any maintenance drugs.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Post transplant chemo blues
Hi Ellen, sounds like you have a lot on your plate, with taking your chemotherapy and also having a full work and family life! As J. Barnes has done, I also do take trazodone on dex days and for a day afterward so that I can get a better night's sleep.
I think that none of us who are going through these treatments will ever be quite the same as we were before having myeloma, and one just has to make allowances for that. You are under stresses that people not on chemo are not, and so will need extra rest, and time for yourself. Have you tried just walking, at a gentle pace, for exercise?
There are programs provided by cancer centres that help people cope with these sorts of problems too. We have a centre called 'Wellspring', which offers free programs for cancer patients, that many people 'that many people enjoy taking.
I think that none of us who are going through these treatments will ever be quite the same as we were before having myeloma, and one just has to make allowances for that. You are under stresses that people not on chemo are not, and so will need extra rest, and time for yourself. Have you tried just walking, at a gentle pace, for exercise?
There are programs provided by cancer centres that help people cope with these sorts of problems too. We have a centre called 'Wellspring', which offers free programs for cancer patients, that many people 'that many people enjoy taking.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Post transplant chemo blues
Thank you for your responses! I sometimes forget about the "new normal." You helped to remind me. I always think that I "should" be feeling better than I am, and that remission does not always equal feeling entirely well. I should also mention that I had an appendectomy (laparoscopic), on April 1, and prior to that a dental infection that required two extractions. Plus, I had the RSV virus in January. So, although I was fortunate not to have any life threatening complications from the ASCT, the road to recovery was not necessarily a smooth one. Whose is?
I am very fortunate to "look well," however, we all know how that goes......Everyone says, "You look mahvelous, dahlink!" So, after a few of those comments you start to believe that you shouldn't complain about anything and should just go on about your business. Easier said than done.
Thanks again to my Beacon buddies for validating my concerns and for offering excellent suggestions!
I am very fortunate to "look well," however, we all know how that goes......Everyone says, "You look mahvelous, dahlink!" So, after a few of those comments you start to believe that you shouldn't complain about anything and should just go on about your business. Easier said than done.
Thanks again to my Beacon buddies for validating my concerns and for offering excellent suggestions!
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