I imagine the answers could vary quite a bit, but I'm curious as to how long it's usually takes for Velcade-induced neuropathy to "wear off"? I understand that for some patients the damage is permanent, but what about those for whom it diminishes over time. How long does it take?
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 (gabapentin) 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 cycle of Revlimid, Velcade, and dexamethasone (RVD) 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
Forums
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jonesgangmom - Name: Beth
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: Dec. 2010
- Age at diagnosis: 47
Re: Velcade-induced neuropathy: how long for it to go away?
Beth:
My husband had 6 cycles of Velcade, the last one on May 24, 2011, and he is still bothered by peripheral neuropathy in his feet and lower legs. Neurontin (gabapentin) was prescribed, but did nothing to help with the pain.
Sorry I don't have better news.
My husband had 6 cycles of Velcade, the last one on May 24, 2011, and he is still bothered by peripheral neuropathy in his feet and lower legs. Neurontin (gabapentin) was prescribed, but did nothing to help with the pain.
Sorry I don't have better news.
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Sarah - Name: Sarah
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: October 7, 2010
- Age at diagnosis: 72
Re: Velcade-induced neuropathy: how long for it to go away?
My husband also had Velcade as first line of treatment - 6 to 8 cycles followed by transplant in 2010. Still has pain in feet, but Neurontin 3 x a day plus hydrocodone helps. I don't see his will ever go away as it's been over a year. Best of luck - hope the treatments are working. Kay
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Kansas - Name: Rex
- Who do you know with myeloma?: self
- When were you/they diagnosed?: May 2010
- Age at diagnosis: 61
Re: Velcade-induced neuropathy: how long for it to go away?
I had 4 cycles of Velcade IV with dex last summer in preparation for an autologous stem cell transplant last September. The neuropathy started after the 2nd cycle, and got a bit worse with the two subsequent. Doctor really wanted me to take all 4 cycles, tho, because here in Ontario the oncological community seems quite committed to stem cell transplant as early as possible.
Anyhow, I am on gabapentin 300 mg 2x daily to control the neuropathy which was initially in my hands and feet to past the ankles at it's worst, and now is out of my hands, and never extends past the balls of my feet any more. Also, where before I frequently got sharp 'pins and needles' and random foot twitches, those are pretty much a thing of the past. Now it's just basically numbness in the toes, which often gets almost so strong that I have balance issues a bit.
Overall, I think the neuropathy is still slowly abating, but I am pretty sure it won't be going completely away, at least not any time at all soon. If I miss a dose of gabapentin, or am a few hours late with the night one, I get to know about it ... tingly numbness or pins and needles is often the case. Sometimes I forget the night one if I have taken the morning one quite late (I still sometimes sleep in too much), and I will then sometimes be awakened by the pain, or else be in real trouble in the morning. But the gabapentin gets it down in about an hour or so. It doesn't happen often, as I have become quite habitual in my pill-popping ... another delightful side effect of cancer, I guess.
Lots of folk have neuropathy quite significantly for a very long time, though, so I am grateful that it is only an irritant for me, rather than a life-altering issue.
Glad to see your doctor is sensitive to the problem!
Anyhow, I am on gabapentin 300 mg 2x daily to control the neuropathy which was initially in my hands and feet to past the ankles at it's worst, and now is out of my hands, and never extends past the balls of my feet any more. Also, where before I frequently got sharp 'pins and needles' and random foot twitches, those are pretty much a thing of the past. Now it's just basically numbness in the toes, which often gets almost so strong that I have balance issues a bit.
Overall, I think the neuropathy is still slowly abating, but I am pretty sure it won't be going completely away, at least not any time at all soon. If I miss a dose of gabapentin, or am a few hours late with the night one, I get to know about it ... tingly numbness or pins and needles is often the case. Sometimes I forget the night one if I have taken the morning one quite late (I still sometimes sleep in too much), and I will then sometimes be awakened by the pain, or else be in real trouble in the morning. But the gabapentin gets it down in about an hour or so. It doesn't happen often, as I have become quite habitual in my pill-popping ... another delightful side effect of cancer, I guess.
Lots of folk have neuropathy quite significantly for a very long time, though, so I am grateful that it is only an irritant for me, rather than a life-altering issue.
Glad to see your doctor is sensitive to the problem!
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Snip - Name: John Snippe
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Jan, 2011
- Age at diagnosis: 56
Re: Velcade-induced neuropathy: how long for it to go away?
I've had peripheral neuropathy ever since my first few Velcade treatments in Fall 2007. After trying every possible medication and treatment recommended to me, I decided to just live with it as best as possible with no medication. Mine is mostly in the toes of both feet. It is my only truly irritating side effect of multiple myeloma. I have found that walking on sand makes my feet feel better. If you are lucky enough to be near a beach or lake fine, but you can get the same impact by getting a kiddie pool and filling with sand and walking in place on that. Best of luck!
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micallie
Re: Velcade-induced neuropathy: how long for it to go away?
I was put on Velcade after my initial multiple myeloma diagnosis in April last year. I started experiencing peripheral neuropathy sometime in late May. The neuropathy came on very suddenly one night and it felt like someone had hit me in the back of the legs with a baseball bat. The pain was pretty excruciating, but I found that it subsided considerably during the day and when I was walking.
I was prescribed hydromorphone and morphine ER for the peripheral neuropathy pains, which extended all the way up to just below my knees. I also developed the usual burning, tingling, and numbness that comes with peripheral neuropathy, mostly in the legs and feet, but some in the hands.
In July I had to be taken off Velcade because I had developed an orthostatic blood pressure condition from the peripheral nerve damage. My blood pressure was dropping significantly when I would stand up and I was blacking out. My blood pressure would drop to as low as 72 over the machine could not make a reading.
I went to the ER and was admitted to the hospital for a week while I was being tested extensively for the cause of my condition before it was determined to be peripheral nerve damage. Thankfully, I slowly recovered from my orthostatic blood pressure over the next few months. If I had not, it would have really affected my quality of life.
Today, the orthostatic blood pressure appears to be completely reversed. I still have peripheral neuropathy in my feet that act up at time, but I can tolerate it without out the use of opiates. When the pain was bad, I really needed the opiates, but it would take a lot to get me to take them again. The neuropathy had been getting better last fall, but I found I could not stop taking the opiates as I had become dependent on them. Thankfully when I went in for my stem cell transplant in September, I was able to quit them while in the hospital. I think the Ativan (lorazepam) helped.
This is a long response, but the point I am trying to emphasize is that it is best not to let the neuropathy get that severe to start with. It can cause a lot of problems and may not ever go away. The Velcade did work really well on me – my cancerous bone marrow went from over 30% to under 2%.
I was prescribed hydromorphone and morphine ER for the peripheral neuropathy pains, which extended all the way up to just below my knees. I also developed the usual burning, tingling, and numbness that comes with peripheral neuropathy, mostly in the legs and feet, but some in the hands.
In July I had to be taken off Velcade because I had developed an orthostatic blood pressure condition from the peripheral nerve damage. My blood pressure was dropping significantly when I would stand up and I was blacking out. My blood pressure would drop to as low as 72 over the machine could not make a reading.
I went to the ER and was admitted to the hospital for a week while I was being tested extensively for the cause of my condition before it was determined to be peripheral nerve damage. Thankfully, I slowly recovered from my orthostatic blood pressure over the next few months. If I had not, it would have really affected my quality of life.
Today, the orthostatic blood pressure appears to be completely reversed. I still have peripheral neuropathy in my feet that act up at time, but I can tolerate it without out the use of opiates. When the pain was bad, I really needed the opiates, but it would take a lot to get me to take them again. The neuropathy had been getting better last fall, but I found I could not stop taking the opiates as I had become dependent on them. Thankfully when I went in for my stem cell transplant in September, I was able to quit them while in the hospital. I think the Ativan (lorazepam) helped.
This is a long response, but the point I am trying to emphasize is that it is best not to let the neuropathy get that severe to start with. It can cause a lot of problems and may not ever go away. The Velcade did work really well on me – my cancerous bone marrow went from over 30% to under 2%.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Velcade-induced neuropathy: how long for it to go away?
How long does it take for neuropathy to lessen once Velcade treatment has been suspended?
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Madge - Name: Madge
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 3 Months ago
- Age at diagnosis: 71
Re: Velcade-induced neuropathy: how long for it to go away?
I took Velcade / dex for about a year and a half. Peripheral neuropathy started about two months in. I had pins and needles in feet with strong burning sensation after walking more than 100 meters. I stopped Velcade in October 2011 to start an autologous stem cell transplant (ASCT) in November 2011. I have not taken Velcade since.
The burning in my feet has not gone away 100%, but is largely reduced. I can walk miles with only slight burning sensation afterward. I still have pins and needles in both feet and hands, although it comes and goes.
In my case, it took at least two months for the peripheral neuropathy to slightly lessen. Other people's results will vary. It depends on the amount of damage from the treatment.
The burning in my feet has not gone away 100%, but is largely reduced. I can walk miles with only slight burning sensation afterward. I still have pins and needles in both feet and hands, although it comes and goes.
In my case, it took at least two months for the peripheral neuropathy to slightly lessen. Other people's results will vary. It depends on the amount of damage from the treatment.
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bryce - Name: Bryce Fowler
- Who do you know with myeloma?: me
- When were you/they diagnosed?: October 2009
- Age at diagnosis: 53
Re: Velcade-induced neuropathy: how long for it to go away?
I take vitamin B complex. It has helped mine a lot. Mine went away for quite sometime. When i stopped the vitamin B, it came back. Not saying it will work, but it has for me, and my naturopathic doctor agreed. She works hand in hand with my oncologist / hematologist.
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greg matthews - Name: Greg Matthews
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 12-28-2010
- Age at diagnosis: 48
Re: Velcade-induced neuropathy: how long for it to go away?
I had quite a few Velcade treatments in 2008 and developed peripheral neuropathy in my feet. It has never gone away. I take 800 mg gabapentin twice a day to manage it. That keeps the pain down but not gone. If I miss a dose my feet feel hot and swollen and hurt more, and it takes a few doses to get it back in line.
Still, I know I have it good compared to a lot of other people. Luckily I have had very, very good response to the Velcade. I believe it saved my life in 2008.
Still, I know I have it good compared to a lot of other people. Luckily I have had very, very good response to the Velcade. I believe it saved my life in 2008.
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