Hi, I've never battled plasmacytoma, but have been battling peripheral neuropathy for years resulting from multiple sclerosis and then Velcade. I've found Lyrica to be the best medicine and also – believe it or not – exercise.
For me, 20 to 30 minutes (worked up to this) on the stationary recumbent bike a couple of times weekly really helps. Relief is temporary. Also, I started out doing PT in a warm therapy pool which really helped get me moving.
Best! BN
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Re: Solitary plasmacytoma & peripheral neuropathy
Bev823
My husband was diagnosed with a solitary plasmacytoma of the rib. He had 28 sessions of failed radiation, a consult with a specialist in Chicago, removal of the rib then 6 months of chemotherapy. He was on VRD. His diagnosis was changed to multiple myeloma without remission early on. After treatment had stopped he started having leg pain and tingling. It was worse at night. Docs think it is restless leg syndrome. I still feel it is neuropathy as I have taken care of people with neuropathy plus have a friend with severe diabetic neuropathy. Since he is starting to feel better he has decided not to push the issue.
When he first saw his oncologist and we still thought it was a single plasmacytoma we were told he would have to have routine blood tests and at the least yearly skeletal surveys for the rest of his life.
I agree with others you should see someone who is a specialist with multiple myeloma. At least get a consult with one. Also talk with someone about starting one of the medications for neuropathy.
My husband was diagnosed with a solitary plasmacytoma of the rib. He had 28 sessions of failed radiation, a consult with a specialist in Chicago, removal of the rib then 6 months of chemotherapy. He was on VRD. His diagnosis was changed to multiple myeloma without remission early on. After treatment had stopped he started having leg pain and tingling. It was worse at night. Docs think it is restless leg syndrome. I still feel it is neuropathy as I have taken care of people with neuropathy plus have a friend with severe diabetic neuropathy. Since he is starting to feel better he has decided not to push the issue.
When he first saw his oncologist and we still thought it was a single plasmacytoma we were told he would have to have routine blood tests and at the least yearly skeletal surveys for the rest of his life.
I agree with others you should see someone who is a specialist with multiple myeloma. At least get a consult with one. Also talk with someone about starting one of the medications for neuropathy.
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Jmiller - Name: Harleygirl
- Who do you know with myeloma?: My husband
- When were you/they diagnosed?: January 2014
- Age at diagnosis: 57
Re: Solitary plasmacytoma & peripheral neuropathy
Bar-none wrote:
Hi Bar-none, what, if any, nasty side effects have to come across from Lyrica?
I've found Lyrica to be the best medicine and also – believe it or not – exercise.
Hi Bar-none, what, if any, nasty side effects have to come across from Lyrica?
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Solitary plasmacytoma & peripheral neuropathy
Bev823 wrote:
I am 48 years old and have severe polyneuropathy caused from a solitary plasmacytoma located on my sacrum / spine. As a result of it, I am now partially paralyzed from the knees down.
I was diagnosed May 2015. However, I began having symptoms in August 2014. They never found the cancer for almost a year (the doctor actually misdiagnosed me initially).
I underwent radiation right away. My neuropathy has never gotten any better. I'm homebound and require care / help. I was unable to work after I became paralyzed (I also lost use of my arms and hands but have regained limited use). I'm still seeing a neurologist but my prognosis as far as ever being able to walk again is grim.
I hope you're doing better. God Bless
I am feeling discouraged that no one has had experience with my symptoms. It would be reassuring to know there was someone who could relate.
I am 48 years old and have severe polyneuropathy caused from a solitary plasmacytoma located on my sacrum / spine. As a result of it, I am now partially paralyzed from the knees down.
I was diagnosed May 2015. However, I began having symptoms in August 2014. They never found the cancer for almost a year (the doctor actually misdiagnosed me initially).
I underwent radiation right away. My neuropathy has never gotten any better. I'm homebound and require care / help. I was unable to work after I became paralyzed (I also lost use of my arms and hands but have regained limited use). I'm still seeing a neurologist but my prognosis as far as ever being able to walk again is grim.
I hope you're doing better. God Bless
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Lisa123
Re: Solitary plasmacytoma & peripheral neuropathy
I have been prescribed gabapentin (Neurontin) for peripheral neuropathy in my legs. I had a plasmacytoma in my T11 vertebra, it was removed and replaced with a cage and then spinal fusion.
I hope you can find something to relieve your pain.
I hope you can find something to relieve your pain.
Re: Solitary plasmacytoma & peripheral neuropathy
Hi,
I was diagnosed almost exactly as Debbie, but tumor was in sacrum impinging on a couple nerves. I have significant neuropathy and terrible foot pain associated with it. I am hoping to hear that your neuropathy has gone away now!
HR
I was diagnosed almost exactly as Debbie, but tumor was in sacrum impinging on a couple nerves. I have significant neuropathy and terrible foot pain associated with it. I am hoping to hear that your neuropathy has gone away now!
HR
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