My initial therapy after diagnosis in January 2011 was four cycles of Velcade in the IV form. The peripheral neuropathy began about 6 weeks after the last cycle was complete. At first it was a very uncomfortable sensation effecting the soles of my feet. I felt as if I was walking on broken glass.
This feeling went away fairly quickly – I would say within 2 to 3 weeks – but I have had the sensation that my feet were very cold for at least the past year. This was most intense for the first three months after the Velcade treatments stopped, but I still have those sensations occasionally. Just with a lot less intensity and frequency.
I don't take any drug for this as its more of an annoyance than a true disabling or debilitating situation. I feel fortunate when hearing the experiences of others in this forum. The peripheral neuropathy seems to be isolated in my case to just my feet.
Forums
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indy mike - Name: Mike Mathias
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Jan 2011
- Age at diagnosis: 51
Re: Velcade-induced neuropathy: how long for it to go away?
My husband had 6 IV Velcade treatments and 2 subcutaneous treatments before the neuropathy caught up with him to the point the doctor advised taking a break 3 weeks ago. He started on Neurontin just 6 days ago (low dose of 100 mg 3x a day and worked up to 300 mg 3x a day starting today). The doctor would like him to have one more Revlimid, Velcade, and dexamethasone cycle before stem cell transplant, but not until the neuropathy is under control.
Just curious as to how reasonable it is to hope to see improvement soon!
Thanks in advance for you input!
Beth
Just curious as to how reasonable it is to hope to see improvement soon!
Thanks in advance for you input!
Beth
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Sum
Re: Velcade-induced neuropathy: how long for it to go away?
I'm also interested in how long it takes for Velcade-related neuropathy to go away, and what can be done about it.
I'm new to this forum and I just wanted some insight on things. My mother was just diagnosed with multiple myeloma in October of 2017 and immediately started therapy without question. She was taking Revlimid, Velcade, and dexamethasone and she had some side effects, but nothing debilitating.
After about a month of treatment she started getting some slight neuropathy in her feet, which caused the doctor to reduce the dose, but the neuropathy continued at an increased rate. Finally Velcade was discontinued and she was given gabapentin (Neurontin), after about a month of taking the gabapentin with no relief or reduction in pain she was switched to duloxetine (Cymbalta). The duloxetine caused her throat to swell so she stopped taking it.
It's been about 2 months since shes stopped taking Velcade but she continues to have neuropathy, which seems to be getting worse instead of better. Now shes taking Lyrica, which doesn't seem to be helping either. It's gotten to the point where she can barely walk and is starting to get discouraged about ever getting better.
I've asked the doctors how long it would take to get better, but they don't seem to know. I guess i'm just worried that this won't and she won't be able to continue her treatment.
So I'm trying to find more information on how long it usually takes for this sort of neuropathy to get better, and what can be taken for it to help speed the process?
Thank you for your help,
Theodule
I'm new to this forum and I just wanted some insight on things. My mother was just diagnosed with multiple myeloma in October of 2017 and immediately started therapy without question. She was taking Revlimid, Velcade, and dexamethasone and she had some side effects, but nothing debilitating.
After about a month of treatment she started getting some slight neuropathy in her feet, which caused the doctor to reduce the dose, but the neuropathy continued at an increased rate. Finally Velcade was discontinued and she was given gabapentin (Neurontin), after about a month of taking the gabapentin with no relief or reduction in pain she was switched to duloxetine (Cymbalta). The duloxetine caused her throat to swell so she stopped taking it.
It's been about 2 months since shes stopped taking Velcade but she continues to have neuropathy, which seems to be getting worse instead of better. Now shes taking Lyrica, which doesn't seem to be helping either. It's gotten to the point where she can barely walk and is starting to get discouraged about ever getting better.
I've asked the doctors how long it would take to get better, but they don't seem to know. I guess i'm just worried that this won't and she won't be able to continue her treatment.
So I'm trying to find more information on how long it usually takes for this sort of neuropathy to get better, and what can be taken for it to help speed the process?
Thank you for your help,
Theodule
Re: Velcade-induced neuropathy: how long for it to go away?
Hello Theodule,
Velcade (bortezomib) induced neuropathy is difficult to manage or reverse when it occurs. It may dissipate over time, but, like multiple myeloma, Velcade-induced neuropathy is very individualistic. Unfortunately. It took my spouse approximately 6 months tweaking different medications, dosages, and timing, working alongside the palliative care physician each month, for the neuropathy to be manageable. My spouse is currently on two different nerve pain medications, taken daily, different dosages, at different times, of the day, for the neuropathy.
The cancer center where my spouse is seen has a palliative care department. The physicians and nurses work with the patients to help with the pain management (and other related issues). You may want to see if the facility where your mother is being seen has such a resource.
Best,
ZZ
Velcade (bortezomib) induced neuropathy is difficult to manage or reverse when it occurs. It may dissipate over time, but, like multiple myeloma, Velcade-induced neuropathy is very individualistic. Unfortunately. It took my spouse approximately 6 months tweaking different medications, dosages, and timing, working alongside the palliative care physician each month, for the neuropathy to be manageable. My spouse is currently on two different nerve pain medications, taken daily, different dosages, at different times, of the day, for the neuropathy.
The cancer center where my spouse is seen has a palliative care department. The physicians and nurses work with the patients to help with the pain management (and other related issues). You may want to see if the facility where your mother is being seen has such a resource.
Best,
ZZ
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ZippyZelda - Name: ZippyZelda
- Who do you know with myeloma?: Spouse
Re: Velcade-induced neuropathy: how long for it to go away?
Hi,
Dr. Shain has a post in another thread that may be helpful. He notes that Velcade-related neuropathy typically is reversible within 6-9 months in about two-thirds of the people that get it. This is different than neuropathy associated with thalidomide, which does not reverse itself as frequently.
There also are a number of posts in the thread where Dr. Shain posted that mention potential options for treating neuropathy.
Good luck!
Dr. Shain has a post in another thread that may be helpful. He notes that Velcade-related neuropathy typically is reversible within 6-9 months in about two-thirds of the people that get it. This is different than neuropathy associated with thalidomide, which does not reverse itself as frequently.
There also are a number of posts in the thread where Dr. Shain posted that mention potential options for treating neuropathy.
Good luck!
Re: Velcade-induced neuropathy: how long for it to go away?
Thank you so much ZippyZelda, I appreciate your prompt response.
Re: Velcade-induced neuropathy: how long for it to go away?
After 5 cycles of Revlimid, Velcade, and dexamethasone (RVD) in 2014, I developed severe peripheral neuropathy in my feet and legs. Gabapentin (up to 3200 mg/day) did nothing to alleviate the pain, burning, and tingling. Only time seems to help. I still have peripheral neuropathy to this day, although only about half as bad as it was 3 and 1/2 years ago.
Good luck.
Good luck.
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Dano - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan 2014
- Age at diagnosis: 65
Re: Velcade-induced neuropathy: how long for it to go away?
Sorry to hear about the peripheral neuropathy you're still experiencing, Dano. I remember your earlier posts on the subject, and I would have thought that you had experienced some relief by now. Unfortunately, there are some cases of Velcade-related neuropathy that do not improve much over time.
Good luck!
Good luck!
Re: Velcade-induced neuropathy: how long for it to go away?
I had 8 weeks of non-stop Velcade, cyclophosphamide, and dexamethasone with no break. I had a great response, but the peripheral neuropathy has required total stoppage and a switch from Velcade to Kyprolis.
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z-man - Name: z-man
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Dec 2017
- Age at diagnosis: 56
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