Hello everyone. I'm here to introduce myself & tell my brother's story.
My brother started having severe bone pain in February 2011. After being incorrectly diagnosed with everything from side effects of cholesterol medication to arthritis, he was finally diagnosed with multiple myeloma in August 2011. His pain was so severe he could not climb the stairs to his bedroom without screaming in pain and crying. I was living with him at the time and insisted he see another doctor who would not brush him off. He had an MRI which showed the lytic lesions and further testing was ordered including a bone marrow biopsy. The oncologist said he had 70% myeloma in his body. He had lytic lesions in his femurs, spine, humerus & skull. He was immediately started on Velcade, Revlimid and Dex. Five months later he was told he was not a candidate for SCT because of severe reactions to the drugs they gave him in preparation for the SCT. He continued his regimen and again, because of side effects, was switched to taking only Revlimid. In May 2013 he was told he was in remission and told to stop the Revlimid. However, his body has paid a price for this disease. He has spine fractures, collapsed vertebrae, severe lymphedema, neuropathy in legs and hands, blot clot & occlusion in jugular and so much pain that he still takes oxycodone, OxyContin & wears a back brace, neck brace, wraps both legs & wears compression stockings, and uses hot wax treatments on his hands. He still has excruciating pain, fatigue, & anemia.
I hope someone here can relate to these problems & give me some insight on the lymphedema especially. He is now 61 years old but has an extremely poor quality of life. He thinks soon he will need a 24/7 caregiver because of these problems. He is fortunate that he has lived for 2 years now but I can't understand why others are reporting being back to work & living normally after treatment. Please help me with anything you can share.
Carol
Forums
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Lillyput189 - Who do you know with myeloma?: Self
- When were you/they diagnosed?: MGUS 2011, multiple myeloma 2014
- Age at diagnosis: 54
Re: Brother has myeloma - side effects out of control
Hi Carol,
I feel for both you and your brother. No one should have such a poor quality of life. You don't mention where you are from, or where he is being treated. My first thought is to get a second opinion from a center that specializes in myeloma, like Dana-Farber.
Lyn
I feel for both you and your brother. No one should have such a poor quality of life. You don't mention where you are from, or where he is being treated. My first thought is to get a second opinion from a center that specializes in myeloma, like Dana-Farber.
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: Brother has myeloma - side effects out of control
Hi Lyn,
We are from Pennsylvania & he is being treated by his local hospital & also every 6 months goes to Penn in Philadelphia. IMHO, his local onc is an arse.
Thanks for your kind words.
Carol
We are from Pennsylvania & he is being treated by his local hospital & also every 6 months goes to Penn in Philadelphia. IMHO, his local onc is an arse.
Thanks for your kind words.
Carol
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Lillyput189 - Who do you know with myeloma?: Self
- When were you/they diagnosed?: MGUS 2011, multiple myeloma 2014
- Age at diagnosis: 54
Re: Brother has myeloma - side effects out of control
I think the problem your brother faces is in the late diagnosis. I didn't get a PET scan at the time I was diagnosed, but the only discomfort I was experiencing was in a rib on my upper right side and mildly in my right femur. My sister was diagnose later in her disease almost 20 years ago and she did suffer from pain even during a short remission.
Unfortunately there is no standard for this disease, not in what is affected nor what, if, or when relief might come.
Hopefully your brother can gain some quality of life and remain in remission.
Unfortunately there is no standard for this disease, not in what is affected nor what, if, or when relief might come.
Hopefully your brother can gain some quality of life and remain in remission.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Brother has myeloma - side effects out of control
Hi Lilyput, Is your brother taking bisphosphonate treatments, such as Aredia or Zometa? Those can help with bone healing and also pain relief. I went thru some of what he is going thru, but the treatments did help a lot.
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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: Brother has myeloma - side effects out of control
Hi Nancy, he finished his Zometa treatments last month. The onc said he had had the limit.
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Lillyput189 - Who do you know with myeloma?: Self
- When were you/they diagnosed?: MGUS 2011, multiple myeloma 2014
- Age at diagnosis: 54
Re: Brother has myeloma - side effects out of control
Hi Lillyput,
I am new to this and early stage, but I had a kyphoplasty (bone cement) for a compression fracture in my L4 vertebra this summer and it really helped with the sciatica I was having. For the neuropathy, maybe a supplement of Alpha Lipoic Acid? It works for some people. Work up from a low dose though and check with his doctor first - I don't know about any drug interactions.
I really hope you can find some relief for him.
Best,
K.
I am new to this and early stage, but I had a kyphoplasty (bone cement) for a compression fracture in my L4 vertebra this summer and it really helped with the sciatica I was having. For the neuropathy, maybe a supplement of Alpha Lipoic Acid? It works for some people. Work up from a low dose though and check with his doctor first - I don't know about any drug interactions.
I really hope you can find some relief for him.
Best,
K.
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KWeisman - Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 12/2012
- Age at diagnosis: 47
Re: Brother has myeloma - side effects out of control
Rosie-
Which oncologist stopped the Zometa? Are you close enough to Penn to switch to using your brother's oncologist there as his primary oncologist? I'm being treated there and have been getting Zometa infusions for 4 years. Whenever I have had a break from the infusions, for surgery and for my ASCT, I've ended up with more bone damage. So, my oncologist has decided to keep me getting the infusions. Fortunately I haven't had any problems with my jaw because of the infusions.
It sounds like your brother, and you if you go with him to his appointments, should have a heart to heart talk with whomever is treating him about his pain, decreased quality of life and what may be some possible treatments that could help. Kyphoplasty or vertebroplasty might be an option for spine fractures. Radiation may be an option for other painful lesions. What are your brother's current blood levels and m-spike?
It sounds like your brother has had treatment for the lymphedema in his legs. You mention that he is bandaging them and wearing compression stockings. Does he have poor circulation in his legs? Did the swelling start before the diagnosis of multiple myeloma, or since? Unfortunately there is no cure for lymphedema. It has to be managed. Bandaging and compression stockings are the best way of managing the swelling. If it is difficult for your brother to do the compression bandaging, he might ask his physical therapist (I'm assuming that he saw a PT for the treatment of the lymphedema and to learn how to do the bandaging and to be measured for stockings) to measure him for a night time compression garment. Insurance may not cover the garment and they are quite expensive, but they last a long time and are quite comfortable and easier to put on than to do the bandaging. I'm a PT who treats people with lymphedema.
I hope that your brother gets some relief with his pain. Your brother might also ask the Penn oncologist for a referral to pain management. The doctor who works with the cancer patients is very good. She works with a lot of people who are having severe peripheral neuropathy. She is not a pain doctor who just gives injections. She works with each person as an individual.
Nancy in Phila
Which oncologist stopped the Zometa? Are you close enough to Penn to switch to using your brother's oncologist there as his primary oncologist? I'm being treated there and have been getting Zometa infusions for 4 years. Whenever I have had a break from the infusions, for surgery and for my ASCT, I've ended up with more bone damage. So, my oncologist has decided to keep me getting the infusions. Fortunately I haven't had any problems with my jaw because of the infusions.
It sounds like your brother, and you if you go with him to his appointments, should have a heart to heart talk with whomever is treating him about his pain, decreased quality of life and what may be some possible treatments that could help. Kyphoplasty or vertebroplasty might be an option for spine fractures. Radiation may be an option for other painful lesions. What are your brother's current blood levels and m-spike?
It sounds like your brother has had treatment for the lymphedema in his legs. You mention that he is bandaging them and wearing compression stockings. Does he have poor circulation in his legs? Did the swelling start before the diagnosis of multiple myeloma, or since? Unfortunately there is no cure for lymphedema. It has to be managed. Bandaging and compression stockings are the best way of managing the swelling. If it is difficult for your brother to do the compression bandaging, he might ask his physical therapist (I'm assuming that he saw a PT for the treatment of the lymphedema and to learn how to do the bandaging and to be measured for stockings) to measure him for a night time compression garment. Insurance may not cover the garment and they are quite expensive, but they last a long time and are quite comfortable and easier to put on than to do the bandaging. I'm a PT who treats people with lymphedema.
I hope that your brother gets some relief with his pain. Your brother might also ask the Penn oncologist for a referral to pain management. The doctor who works with the cancer patients is very good. She works with a lot of people who are having severe peripheral neuropathy. She is not a pain doctor who just gives injections. She works with each person as an individual.
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: Brother has myeloma - side effects out of control
Dear Nancy in Philadelphia,
The local oncologist in Sellersville, PA stopped the Zometa, said he had the max. BTW, I think that onc is an idiot, never takes time to talk or explain things & usually passes my brother off to the nurse practitioner. She did have the onc come in to look at my bro when he had shingles to confirm diagnosis but it's rare he sees him. He has had radiation to the spine lesions but he had a bad reaction to his throat & esophagus. He did complete it but they lowered the dosage & added extra days to make up for that. The lymphedema came after the chemo. His Philadelphia doc is Statdmauer (spelling?) but as I said he only sees him rarely. I just can't believe he should have this quality of life & don't know how to help him. He did see a lymphedema therapist for the correct compression stockings, etc but last week a Baker's cyst ruptured & made the lymphedema worse necessitating 2 ER visits. He does not really have a "team" that takes care of him. He goes to an ortho occasionally, a chiropractor for US & massage (no adjustments), & the local onc office for weekly blood tests as well as more involved blood tests once a month. He's taking turmeric & some other supplements which he discovered through a friend who has multiple myeloma. Hope I answered all your questions. Sometimes I think I have my brother's brain fog. LOL.
Thanks again.
Carol in PA
The local oncologist in Sellersville, PA stopped the Zometa, said he had the max. BTW, I think that onc is an idiot, never takes time to talk or explain things & usually passes my brother off to the nurse practitioner. She did have the onc come in to look at my bro when he had shingles to confirm diagnosis but it's rare he sees him. He has had radiation to the spine lesions but he had a bad reaction to his throat & esophagus. He did complete it but they lowered the dosage & added extra days to make up for that. The lymphedema came after the chemo. His Philadelphia doc is Statdmauer (spelling?) but as I said he only sees him rarely. I just can't believe he should have this quality of life & don't know how to help him. He did see a lymphedema therapist for the correct compression stockings, etc but last week a Baker's cyst ruptured & made the lymphedema worse necessitating 2 ER visits. He does not really have a "team" that takes care of him. He goes to an ortho occasionally, a chiropractor for US & massage (no adjustments), & the local onc office for weekly blood tests as well as more involved blood tests once a month. He's taking turmeric & some other supplements which he discovered through a friend who has multiple myeloma. Hope I answered all your questions. Sometimes I think I have my brother's brain fog. LOL.
Thanks again.
Carol in PA
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Lillyput018
Re: Brother has myeloma - side effects out of control
Dear Lillyput,
Your brother is very lucky to have such a plucky and smart sister! What your brother doesn't have is a Myeloma specialist (and medical team) to create a competent treatment plan for your brother. We took my mom to UAMS in Arkansas and then found a good oncologist at home to implement the plan. I can't stress enough how vital it is for anyonr wiith this insidious cancer to get a good treatment plan from a myeloma specialist. Best to you and your brother.
Kore
Your brother is very lucky to have such a plucky and smart sister! What your brother doesn't have is a Myeloma specialist (and medical team) to create a competent treatment plan for your brother. We took my mom to UAMS in Arkansas and then found a good oncologist at home to implement the plan. I can't stress enough how vital it is for anyonr wiith this insidious cancer to get a good treatment plan from a myeloma specialist. Best to you and your brother.
Kore
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kore
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