In many types of cancer, patients often experience a lot of weight loss. The weight loss is often so significant that it can undermine the success of the treatment the patient is receiving.
I was wondering ... What sort of experience have people here had with their weight during their multiple myeloma treatment? Has it been an issue -- in one direction or the other? And, if so, what sort of suggestions have you received from your doctors to deal with the issue, or what have you done on your own to tackle the problem (if anything)?
I'm guessing that experiences will vary depending, for example, on whether people have been taking steroids such as dexamethasone or prednisone. And, since prednisone and dex are common myeloma meds, I also have a hunch what weight issue most myeloma patients have faced!
Still, it seems like this would be an interesting issue to get different bits of feedback on.
Thanks!
Forums
Re: Weight loss or gain during multiple myeloma treatment?
Interesting question.
My induction therapy was Velcade and dexamethasone and I did develop quite an appetite. I also started to deal with diarrhea so weight gain or loss did not become an issue. When my stem cells were going to be harvested, one of the drugs I took was cytoxan. I became nauseous and I vomited and food didn't taste the same and I lost 20 pounds. After the harvesting I started taking Revlimid and dexamethasone and I gained the weight back. While I was on no medication and now while I am taking a reduced dose of Revlimid I am maintaining my weight.
My induction therapy was Velcade and dexamethasone and I did develop quite an appetite. I also started to deal with diarrhea so weight gain or loss did not become an issue. When my stem cells were going to be harvested, one of the drugs I took was cytoxan. I became nauseous and I vomited and food didn't taste the same and I lost 20 pounds. After the harvesting I started taking Revlimid and dexamethasone and I gained the weight back. While I was on no medication and now while I am taking a reduced dose of Revlimid I am maintaining my weight.
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Linda
Re: Weight loss or gain during multiple myeloma treatment?
I gained weight while I was on Revlimid and Dex. Then after my stem cell transplant and the development of severe nausea I lost all of the weight that I had gained and about 10 pounds more. I'm not taking anything right now and have gained about 5 pounds since I started being able to eat again. I would say that the 5 pounds have come in the last 2 months. Hopefully I can keep it to 5 pounds and no more.
I was really uncomfortable with the weight I gained with the Dex. I wasn't really eating any differently than I normally do, but the weight seemed to keep going up.
Nancy
I was really uncomfortable with the weight I gained with the Dex. I wasn't really eating any differently than I normally do, but the weight seemed to keep going up.
Nancy
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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: Weight loss or gain during multiple myeloma treatment?
Dom lost alot of weight. Over 20 pounds. His clinical trial called for Thalidomide- no steroids.
I was buying ENSURE by the case for him. Had to pretty much force it down him. Several months after the transplant, he began gaining weight on his own. (when his taste buds finally came back). He looks like the picture of health now!
I was buying ENSURE by the case for him. Had to pretty much force it down him. Several months after the transplant, he began gaining weight on his own. (when his taste buds finally came back). He looks like the picture of health now!
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Nanette - Name: Nanette "Deaux"
- Who do you know with myeloma?: My dear husband, Dominic
- When were you/they diagnosed?: Spring of 2008
- Age at diagnosis: 62
Re: Weight loss or gain during multiple myeloma treatment?
Before I get to the weight gain/loss topic, a few little things to note
1) In general, most therapies with myeloma are given with dexamethasone -- thalidomide/dex, Revlimid/dex, Velcade/dex, melphalan/prednisone, etc. Even high dose IV melphalan, at most large autologous stem cell transplant centers, are given with dexamethasone, emend (aprepitant), and zofran.
2) Now steroids essentially double the response rates when combined with other active myeloma agents (this is really published only for patients at diagnosis and at relapse).
3) Obesity has been reported to essentially double the risk of myeloma. Now this isn't so significant because it increases the incidence for a caucasian from 4 per 100,000 to 8 per 100,000, similar to the increase in incidence for African-Americans.
So now about the weight loss. Steroids in general can exacerbate heartburn (gastroesophageal reflux) which can cause nausea, but, more often than not, steroids increase appetite, promote water retention, and overall lead to weight gain.
Most patients gain weight with most myeloma therapies except for high dose IV melphalan associated with autologous transplant.
And lastly, it's odd that thalidomide caused him such nausea. Thalidomide as you know was used more than 50 yrs ago to treat morning sickness. As an aside, in a manuscript in Science published approx 2 months ago, the mechanism of thalidomide-induced birth defects was finally reported, a half century too late.
1) In general, most therapies with myeloma are given with dexamethasone -- thalidomide/dex, Revlimid/dex, Velcade/dex, melphalan/prednisone, etc. Even high dose IV melphalan, at most large autologous stem cell transplant centers, are given with dexamethasone, emend (aprepitant), and zofran.
2) Now steroids essentially double the response rates when combined with other active myeloma agents (this is really published only for patients at diagnosis and at relapse).
3) Obesity has been reported to essentially double the risk of myeloma. Now this isn't so significant because it increases the incidence for a caucasian from 4 per 100,000 to 8 per 100,000, similar to the increase in incidence for African-Americans.
So now about the weight loss. Steroids in general can exacerbate heartburn (gastroesophageal reflux) which can cause nausea, but, more often than not, steroids increase appetite, promote water retention, and overall lead to weight gain.
Most patients gain weight with most myeloma therapies except for high dose IV melphalan associated with autologous transplant.
And lastly, it's odd that thalidomide caused him such nausea. Thalidomide as you know was used more than 50 yrs ago to treat morning sickness. As an aside, in a manuscript in Science published approx 2 months ago, the mechanism of thalidomide-induced birth defects was finally reported, a half century too late.
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Dr. Craig Hofmeister - Name: Craig C. Hofmeister, M.D.
Re: Weight loss or gain during multiple myeloma treatment?
James is on thalidomide, dexamethasone, idarubicin, cyclophosphamide and has lost about 15 kilograms (33 lbs) since diagnosis and during treatment. He has managed to fight hard to gain 5 kilograms (11 lbs) of that back, but it didn't come back in a way that fit his body pattern before myeloma. Maybe it's the dex, not sure, but he's gained it all in the stomach, making his stomach a bit puffy, whereas the rest of him is still very skinny. He eats tons during the day, but is finding it incredibly difficult to gain any more of the 10 kilograms (22 lbs) he should still gain back.
The weight loss can only be attributed to the cancer and treatment I feel, however he has not had any vomiting or diarrhea during his treatment. He has lost a lot of muscle, and is really skin and bones now.
The weight loss can only be attributed to the cancer and treatment I feel, however he has not had any vomiting or diarrhea during his treatment. He has lost a lot of muscle, and is really skin and bones now.
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carlinandjames - Name: Carlin and James
- Who do you know with myeloma?: James
- When were you/they diagnosed?: April 2010
- Age at diagnosis: 39
Re: Weight loss or gain during multiple myeloma treatment?
Hello Carlin,
Did the doctors check, if James might have a thyroid hyperfunction ? The symptoms of my partner were really similar. He ate not a lot, but enough and lost weight - 8 Kilograms in 8 weeks. He also was very week and trembled all over, especially his hands.
After 3 months, they found out by accident, he had a massive thyroid hyperfunction. Now he has medicaments against it since 4 weeks and feels much better, gained more than 6 kilograms since then.
When you tell, he eats tons of food and doesn't gain much weight - thats a typical symptom.
I wish you and James the very best
Kind regards from Germany
Caro
Did the doctors check, if James might have a thyroid hyperfunction ? The symptoms of my partner were really similar. He ate not a lot, but enough and lost weight - 8 Kilograms in 8 weeks. He also was very week and trembled all over, especially his hands.
After 3 months, they found out by accident, he had a massive thyroid hyperfunction. Now he has medicaments against it since 4 weeks and feels much better, gained more than 6 kilograms since then.
When you tell, he eats tons of food and doesn't gain much weight - thats a typical symptom.
I wish you and James the very best
Kind regards from Germany
Caro
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Caro - Name: Caro
- Who do you know with myeloma?: My partner since more than 12 years
- When were you/they diagnosed?: Aug. 2007
- Age at diagnosis: 57
Re: Weight loss or gain during multiple myeloma treatment?
HI Caro,
thanks for tip-off, James actually is slightly hyperthyroid, we had him tested. We are going to find out more when we talk with his hematologist next week. His GP is the one who did the blood testing.
Does anyone else have this experience from their myeloma treatment? He was never hyperthyroid prior to his myeloma and treatment, as we used to get regular blood tests and they were all always normal. So, we are thinking it may be a result of his treatment, and hoping it will pass once he's off the heavy combination induction therapy he's been on until quite recently.
If anyone else has had this as a result of treatment or their myeloma I'd love it if you shared your experiences. We're really hesitant to start him on even more medication on top of everything else he's on.
thanks for tip-off, James actually is slightly hyperthyroid, we had him tested. We are going to find out more when we talk with his hematologist next week. His GP is the one who did the blood testing.
Does anyone else have this experience from their myeloma treatment? He was never hyperthyroid prior to his myeloma and treatment, as we used to get regular blood tests and they were all always normal. So, we are thinking it may be a result of his treatment, and hoping it will pass once he's off the heavy combination induction therapy he's been on until quite recently.
If anyone else has had this as a result of treatment or their myeloma I'd love it if you shared your experiences. We're really hesitant to start him on even more medication on top of everything else he's on.
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carlinandjames - Name: Carlin and James
- Who do you know with myeloma?: James
- When were you/they diagnosed?: April 2010
- Age at diagnosis: 39
Re: Weight loss or gain during multiple myeloma treatment?
Hey Carlin,
It sounds to me like it'd probably be about what I'd expect off that combination, his consultant and team should know if it's abnormal for the treatment, unlikely to be the cancer as its effects should be reduced by effective treatment.
If the cyclophosphamide has been part of the induction therapy I'm not really too surprised that he's losing weight. I only had one decent dose of it to prep me for stem cell collection and it made me feel pretty gross, it's a pretty nasty chemo, side effect wise. Thalidomide made me pretty drowsy, dex makes me weak and gives me muscle wasting (that's what the puffy belly is from, abs get weak and everything kinda hangs a bit). I haven't had idarubicin before, I've had doxorubicin which is similar and didn't experience any notable side effects myself.
Regards Paul.
It sounds to me like it'd probably be about what I'd expect off that combination, his consultant and team should know if it's abnormal for the treatment, unlikely to be the cancer as its effects should be reduced by effective treatment.
If the cyclophosphamide has been part of the induction therapy I'm not really too surprised that he's losing weight. I only had one decent dose of it to prep me for stem cell collection and it made me feel pretty gross, it's a pretty nasty chemo, side effect wise. Thalidomide made me pretty drowsy, dex makes me weak and gives me muscle wasting (that's what the puffy belly is from, abs get weak and everything kinda hangs a bit). I haven't had idarubicin before, I've had doxorubicin which is similar and didn't experience any notable side effects myself.
Regards Paul.
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PaulG - Name: Paul
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2008
- Age at diagnosis: 29
Re: Weight loss or gain during multiple myeloma treatment?
Hi Carlin,
Our hematologist told us, his hyperthyreosis might be a an aftereffect of a CT, because the contrast agents for this contains a lot of iodide. If you live in an area with not much iodide in the water or so, it might happen, if the thyroid gets much iodide of the contrast agent, it produces these hormons without control. The result is a hyperthyreosis.
I wish you both the very best
Kind regards
Caro
Our hematologist told us, his hyperthyreosis might be a an aftereffect of a CT, because the contrast agents for this contains a lot of iodide. If you live in an area with not much iodide in the water or so, it might happen, if the thyroid gets much iodide of the contrast agent, it produces these hormons without control. The result is a hyperthyreosis.
I wish you both the very best
Kind regards
Caro
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Caro - Name: Caro
- Who do you know with myeloma?: My partner since more than 12 years
- When were you/they diagnosed?: Aug. 2007
- Age at diagnosis: 57
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