I have multiple myeloma and the Velcade I took for 6 cycles caused neuropathy in both calves and numbness in both feet. Does any one share this problem?
Roy
Forums
Re: Neuropathy and numbness from Velcade - how common?
From what I've read, I think it's fairly common.
I took 5 cycles of Velcade with Revlimid and dexamethasone last year. I had numbness / peripheral neuropathy in both feet as a result. I'm assuming that the Velcade was the cause of the numbness. For some reason my right foot is always worse.
After I stopped treatment prior to a transplant, the numbness lessened but never went away completely. Then I had an auto stem cell transplant and was given melphalan and then Velcade on days +2 and +4 after the transplant. The numbness in my feet got worse after the transplant.
It's slowly getting better again about 4+ months after the transplant. Luckily, I have mainly just numbness and not the shooting pains that others get, although I have had occasional shooting pains, so I know what that feels like.
I took 5 cycles of Velcade with Revlimid and dexamethasone last year. I had numbness / peripheral neuropathy in both feet as a result. I'm assuming that the Velcade was the cause of the numbness. For some reason my right foot is always worse.
After I stopped treatment prior to a transplant, the numbness lessened but never went away completely. Then I had an auto stem cell transplant and was given melphalan and then Velcade on days +2 and +4 after the transplant. The numbness in my feet got worse after the transplant.
It's slowly getting better again about 4+ months after the transplant. Luckily, I have mainly just numbness and not the shooting pains that others get, although I have had occasional shooting pains, so I know what that feels like.
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DallasGG - Name: Kent
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 6/20/2013
- Age at diagnosis: 56
Re: Neuropathy and numbness from Velcade - how common?
I have multiple myeloma. I live with neuropathy 24 hrs a day from Velcade. Numbness in feet and lower legs. It's worse when I lay down in bed -- a feeling of frozen toes. However, when I am up and walking around, a feeling of defrosting. My feet feel wet at all times, but, in reality my feet are dry to touch. What a feeling!
I am in the process of a stem cell transplant soon, I hope to get some relief. Now I am back on Revlimid and I have muscle contractions in my fingers. I think that I am going to try alternative medicine after the transplant.
I want to share this with you. I saw a man in my dream. He was giving notes to cancer patinets. When he came to me, there was no paper in his hand. He told me, "All you have to do is pray." Since then, I pray when I wake up and before bedtime. I try not to think about the myeloma.
I am not getting worse, and I refuse to get any pain med for the neuropathy. Even though I am getting gabapentin, I am still living with this terrible side effect of the Velcade.
I am in the process of a stem cell transplant soon, I hope to get some relief. Now I am back on Revlimid and I have muscle contractions in my fingers. I think that I am going to try alternative medicine after the transplant.
I want to share this with you. I saw a man in my dream. He was giving notes to cancer patinets. When he came to me, there was no paper in his hand. He told me, "All you have to do is pray." Since then, I pray when I wake up and before bedtime. I try not to think about the myeloma.
I am not getting worse, and I refuse to get any pain med for the neuropathy. Even though I am getting gabapentin, I am still living with this terrible side effect of the Velcade.
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monalisa
Re: Neuropathy and numbness from Velcade - how common?
Unfortunately, peripheral neuropathy is a common side effect from Velcade and from the melphalan used in stem cell transplants. I have similar symptoms to what monalisa described. Lyrica has helped me some. It is not a painkiller, but works somehow to improve the nerve functioning. Good luck!
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Neuropathy and numbness from Velcade - how common?
I had neuropathy so bad I could hardly walk before my stem cell transplant from Velcade / dex,
but I was told only 6% of people get it this badly, also that the mephalan used in the transplant does not cause it.
I still take 6 Lyrica a day for it, as my feet and the ends of my fingers still tingle,8 months later, but, hey, they all work.
but I was told only 6% of people get it this badly, also that the mephalan used in the transplant does not cause it.
I still take 6 Lyrica a day for it, as my feet and the ends of my fingers still tingle,8 months later, but, hey, they all work.
Re: Neuropathy and numbness from Velcade - how common?
I think severe peripheral neuropathy is common with Velcade. When I began treatment, I swore never to take it because all the studies, papers, and patient experiences said it causes irreversible, severe peripheral neuropathy. But my insurance would not cover my treatments fully unless I used it. So I did.
All was well until round five of the chemo (plus a tandem stem-cell transplant) when I was given three infusions of Velcade in a week instead of two, which is the FDA rule. Overnight, I developed severe peripheral neuropathy in my hands and forearms and in my feet and lower legs. Biopsy has revealed both the sensory nerves and the nerves to the muscles are damaged. The damage is permanent.
Now, all my treatment options for my relapse are dependent on how much more damage can occur. I could not live with more pain and with more difficulty walking and using my hands.
Sadly, almost all treatments for myeloma cause nerve damage. Kyprolis supposedly does not – although half the doctors I consulted said it would, and the other half said it would not. Both Pomalyst and radiation caused my nerves to go wild. I am mostly back to "normal," several months after ending these experiments and Kyprolis is my only remaining option. The original chemo gave me the p53 deletion, so I cannot use melphalan, which has lower neurotoxicity.
Not everyone experiences neuropathy with Velcade. But if you do, it is likely to be irreversible and very painful.
All was well until round five of the chemo (plus a tandem stem-cell transplant) when I was given three infusions of Velcade in a week instead of two, which is the FDA rule. Overnight, I developed severe peripheral neuropathy in my hands and forearms and in my feet and lower legs. Biopsy has revealed both the sensory nerves and the nerves to the muscles are damaged. The damage is permanent.
Now, all my treatment options for my relapse are dependent on how much more damage can occur. I could not live with more pain and with more difficulty walking and using my hands.
Sadly, almost all treatments for myeloma cause nerve damage. Kyprolis supposedly does not – although half the doctors I consulted said it would, and the other half said it would not. Both Pomalyst and radiation caused my nerves to go wild. I am mostly back to "normal," several months after ending these experiments and Kyprolis is my only remaining option. The original chemo gave me the p53 deletion, so I cannot use melphalan, which has lower neurotoxicity.
Not everyone experiences neuropathy with Velcade. But if you do, it is likely to be irreversible and very painful.
Re: Neuropathy and numbness from Velcade - how common?
I'm very sorry to hear about the nerve damage that you've suffered, Premonition. It's my understanding, however, that a lot of the peripheral neuropathy that occurs in people treated with Velcade does eventually diminish, if not go away. That's not supposed to be the case, on the other hand, with neuropathy that occurs in patients treated with thalidomide. Thalidomide-related neuropathy is said to be more permanent.
It's also worth mentioning that subcutaneously administered Velcade has a lower tendency to cause peripheral neuropathy than IV Velcade, which is one reason Velcade is more and more being given as a subcutaneous injection.
You mention that neuropathy is a common side effect of treatment with melphalan. I don't think that is true when melphalan is given orally in combination with, for example, prednisone. See, for example, the side effects table in this journal article about the VMP vs. MP trial,
"Bortezomib plus Melphalan and Prednisone for Initial Treatment of Multiple Myeloma," San Miguel et al., New England Journal of Medicine, August 28, 2008; 359:906-917.
In the MP arm of the trial, only about 5 percent of the patients experience peripheral neuropathy, and there were no severe cases of PN.
I could imagine that the high-dose melphalan given during stem cell transplants has a greater tendency to cause PN, but I can't easily find a good reference that gives the rates of PN for high-dose melphalan. I also see millie's posting above where she writes that she was told that high-dose melphalan does not actually have much of a tendency to cause PN.
It's also worth mentioning that subcutaneously administered Velcade has a lower tendency to cause peripheral neuropathy than IV Velcade, which is one reason Velcade is more and more being given as a subcutaneous injection.
You mention that neuropathy is a common side effect of treatment with melphalan. I don't think that is true when melphalan is given orally in combination with, for example, prednisone. See, for example, the side effects table in this journal article about the VMP vs. MP trial,
"Bortezomib plus Melphalan and Prednisone for Initial Treatment of Multiple Myeloma," San Miguel et al., New England Journal of Medicine, August 28, 2008; 359:906-917.
In the MP arm of the trial, only about 5 percent of the patients experience peripheral neuropathy, and there were no severe cases of PN.
I could imagine that the high-dose melphalan given during stem cell transplants has a greater tendency to cause PN, but I can't easily find a good reference that gives the rates of PN for high-dose melphalan. I also see millie's posting above where she writes that she was told that high-dose melphalan does not actually have much of a tendency to cause PN.
Re: Neuropathy and numbness from Velcade - how common?
I experienced a little neuropathy from Velcade, but what was weird is that I got real bad neuropathy from the G shots for my stem cell harvesting. I'm still bad after 5 months.
Kully
Kully
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kullybunnny1 - Name: Kully
- Who do you know with myeloma?: me
- When were you/they diagnosed?: August 2013
- Age at diagnosis: 48
Re: Neuropathy and numbness from Velcade - how common?
I am just now starting to get a little pain in my feet from the Velcade. Grrr ... only one more shot next week, then off to get ready for my SCT in November. Harvest last week of October. My husband was reading a book about multiple myeloma (not sure of the name or author at this moment) and it was very interesting. The author recommended acupuncture to help with this. I may have to give it a try and see if it helps.
Terri
Terri
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Terri Michigan - Name: Terri Michigan
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 2009
- Age at diagnosis: 45
Re: Neuropathy and numbness from Velcade - how common?
I'm getting the 3rd shot of my fourth cycle of Velcade tomorrow. So far so good. I get a shot once a week for 3 weeks, and one week off. I am a violinist, so we are watching very carefully for any signs of neuropathy. Occasionally I get mild tingling, but that's all.
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PeggyB - Name: Peggy B
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 60
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