A member of our support group had a stem cell transplant 2 years ago and had excellent results. She has had multiple episodes of pneumonia and just recently has had vomiting, diarrhea, and swelling, which she feels is over her whole body. Diuretics were tried to no avail and, despite her lack of appetite and gastrointestinal issues, she has gained 20 lb (9 kg) over the last 2 weeks.
Her GP suggested lymphedema, but did not put her on any further medication. She is waiting for an appointment with her specialist.
Any suggestions / similar experiences?
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7 posts
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maryk - Name: maryk
- Who do you know with myeloma?: my husband
- When were you/they diagnosed?: July 2012
Re: Lymphedema associated with multiple myeloma
Hi, I work in a skilled nursing facility, and they utilize a lymphedema massage and follow that with wrapping the legs. I do know that one consideration with this is doctor approval. I know it can be hard on people with congestive heart failure. I'm not sure of the other considerations. But I would think this might be something available on an outpatient basis. Maybe check with some occupational therapists in your area?
Re: Lymphedema associated with multiple myeloma
Hi Mary,
Is the member of your support group who is having swelling problems currently on any form of treatment for her myeloma? You mentioned that she had a stem cell transplant two years ago, but has she been receiving any treatment since then -- even if it's just a bisphosphonate, such as Zometa or Aredia?
There's a good discussion here in the forum that started a couple of years ago, but has gotten postings now and then with similar experiences and potential solutions that people have tried.
https://myelomabeacon.org/forum/swollen-feet-swelling-legs-t2074.html
Excercise, drinking water regularly, and lying down to help with drainage seem to be some general solutions (beyond treatment with diuretics) that people have tried with some success.
It's also interesting that the problem doesn't seem to be tied to any one specific treatment, such as Revlimid, Velcade, or dex. There also are one or two cases where the swelling has developed over time, even without the person being on treatment. Perhaps the myeloma slowly affects the ability of cells to process fluids as they normally should?
Please keep us posted on how this case develops, and let us know if you have any additional questions related to it.
Is the member of your support group who is having swelling problems currently on any form of treatment for her myeloma? You mentioned that she had a stem cell transplant two years ago, but has she been receiving any treatment since then -- even if it's just a bisphosphonate, such as Zometa or Aredia?
There's a good discussion here in the forum that started a couple of years ago, but has gotten postings now and then with similar experiences and potential solutions that people have tried.
https://myelomabeacon.org/forum/swollen-feet-swelling-legs-t2074.html
Excercise, drinking water regularly, and lying down to help with drainage seem to be some general solutions (beyond treatment with diuretics) that people have tried with some success.
It's also interesting that the problem doesn't seem to be tied to any one specific treatment, such as Revlimid, Velcade, or dex. There also are one or two cases where the swelling has developed over time, even without the person being on treatment. Perhaps the myeloma slowly affects the ability of cells to process fluids as they normally should?
Please keep us posted on how this case develops, and let us know if you have any additional questions related to it.
Re: Lymphedema associated with multiple myeloma
If the diuretics didn't help, then there really isn't any medication that can help without knowing what is causing the swelling. It could possibly be kidney problems, or cardiac problems, or, or, or. Lymphedema tratment of the entire body isn't possible. Wrapping her legs isn't the answer to an all body swelling.
Hopefully her specialist will order tests or refer her to other specialists to find out the cause of the swelling.
Nancy in Phila
retired PT specializing in treating people with cancer and people with lymphedema.
Hopefully her specialist will order tests or refer her to other specialists to find out the cause of the swelling.
Nancy in Phila
retired PT specializing in treating people with cancer and people with lymphedema.
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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: Lymphedema associated with multiple myeloma
Hi Cheryl,
Thanks for your input. This person is not on any chemo or bisphosphonates at this time. Since I posted, she has seen her specialist and is being investigated for congestive heart failure. Her kidney tests came back normal. I spoke with her husband yesterday and there has been no improvement but we are early in the game yet. I will take a look at the older postings that you referred to and see if anything jumps out at me. I am so grateful that you took the time to respond. All of it helps.
Thanks for your input. This person is not on any chemo or bisphosphonates at this time. Since I posted, she has seen her specialist and is being investigated for congestive heart failure. Her kidney tests came back normal. I spoke with her husband yesterday and there has been no improvement but we are early in the game yet. I will take a look at the older postings that you referred to and see if anything jumps out at me. I am so grateful that you took the time to respond. All of it helps.
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maryk - Name: maryk
- Who do you know with myeloma?: my husband
- When were you/they diagnosed?: July 2012
Re: Lymphedema associated with multiple myeloma
Thanks Nancy.
We live in a small town, so our myeloma doctor is an internist with a specialty in hematology and also covers some cardiac patients as well. Her kidney tests were normal so he is investigating cardiac issues. The search for answers continues. Again, I would like to express my gratitude to everyone who posts on this forum as it shows us we are not alone on this journey.
Mary
We live in a small town, so our myeloma doctor is an internist with a specialty in hematology and also covers some cardiac patients as well. Her kidney tests were normal so he is investigating cardiac issues. The search for answers continues. Again, I would like to express my gratitude to everyone who posts on this forum as it shows us we are not alone on this journey.
Mary
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maryk - Name: maryk
- Who do you know with myeloma?: my husband
- When were you/they diagnosed?: July 2012
Re: Lymphedema associated with multiple myeloma
Thanks Cindylouise.
As you say, this therapy can be hard on patients with CHF and that is what her doctor is investigating now. But all input is helpful and I am so grateful that you took the time to respond.
Mary
As you say, this therapy can be hard on patients with CHF and that is what her doctor is investigating now. But all input is helpful and I am so grateful that you took the time to respond.
Mary
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maryk - Name: maryk
- Who do you know with myeloma?: my husband
- When were you/they diagnosed?: July 2012
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