I had my last dose of Velcade July 14th, just over a month ago. I would have thought that the neuropathic pain in my feet would have stabilized or even started to subside by now, but in fact the opposite is the case. My feet are often in greater 'pins and needles' pain now (especially first thing as I wake up) than they ever were before.
Is this normal?
Forums
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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: Neuropathy continuing / increasing post treatment?
Hi John,
My husband is experiencing the same thing. For the past month he has had a lot of "pins and needles" pain in his feet. He is also experiencing a lot of leg pain. We went for his myeloma treatment and a doctors appointment 2 weeks ago and the doctor stopped all treatment. They also stopped the Revlimid and dex. His M-spike is down to 1.6 g/dL (16 g/l) from 4.4 since April, but it seems to be at a standstill, so we went to see the doctor at Duke University yesterday that will be doing the stem cell transplant. He was told the damage is probably already done but put him on Cymbalta (duloxetine) to try. The transplant is scheduled for September 28th. I hope that it will relieve some of the pain he's going through.
Let me know if you find anything to help. Good Luck.
Karen
My husband is experiencing the same thing. For the past month he has had a lot of "pins and needles" pain in his feet. He is also experiencing a lot of leg pain. We went for his myeloma treatment and a doctors appointment 2 weeks ago and the doctor stopped all treatment. They also stopped the Revlimid and dex. His M-spike is down to 1.6 g/dL (16 g/l) from 4.4 since April, but it seems to be at a standstill, so we went to see the doctor at Duke University yesterday that will be doing the stem cell transplant. He was told the damage is probably already done but put him on Cymbalta (duloxetine) to try. The transplant is scheduled for September 28th. I hope that it will relieve some of the pain he's going through.
Let me know if you find anything to help. Good Luck.
Karen
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ka1222 - Name: Karen
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 04/13/11
- Age at diagnosis: 49
Re: Neuropathy continuing, maybe increasing, post treatment?
EJ seemed to have the same thing happen to him once he stopped Velcade. The doctors put him on Lyrica (pregabalin) before he started his stem cell transplant, and he has been on it ever since (over two months). Seems to have helped quite a bit. He recently mentioned that he has almost all the feeling back in one of his feet, and that the sharp shooting pains have subsided.
Good luck!
Lyn
Good luck!
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: Neuropathy continuing / increasing post treatment?
My husband had 6 cycles of Velcade and dex, and experienced neuropathy almost the entire time –even during the two months when he was off treatment.
His last Velcade and dex treatment was May 24, and the neuropathy has just begun to lessen. And, he also had the "pins & needles" for a short time, after the treatment ended, but that is no longer a problem. His oncologist has stated that the Velcade can stay in the system for 2 - 4 months.
You've only been off treatment for a little over one month. Hopefully, you'll soon begin to see improvement.
He started on Revlimid and dexamethasone on Saturday, and this morning the itching and rash started. He's thinking this is worse than the neuropathy.
His last Velcade and dex treatment was May 24, and the neuropathy has just begun to lessen. And, he also had the "pins & needles" for a short time, after the treatment ended, but that is no longer a problem. His oncologist has stated that the Velcade can stay in the system for 2 - 4 months.
You've only been off treatment for a little over one month. Hopefully, you'll soon begin to see improvement.
He started on Revlimid and dexamethasone on Saturday, and this morning the itching and rash started. He's thinking this is worse than the neuropathy.
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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: Neuropathy continuing / increasing post treatment?
When I finished Velcade (twice a week), I developed neuropathy about 1 month afterwards. It was very bad for about a week and then I started Cymbalta. After 2 days of Cymbalta, the neuropathy was very tolerable. I have been on it now for over a year with no problems and my neuropathy is very mild now.
I did restart Velcade at once a week with no additional neuropathy. They also can do Velcade injections subcutaneously, which is supposed to cause less neuropathy.
I did restart Velcade at once a week with no additional neuropathy. They also can do Velcade injections subcutaneously, which is supposed to cause less neuropathy.
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Stann - Name: Stann
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 9/11/09
- Age at diagnosis: 46
Re: Neuropathy continuing / increasing post treatment?
I'd also like to know more about how common this is.
I completed my 4th round of Velcade, Revlimid, and dexamethasone treatment in the middle of July, and the only side effects I was experiencing at that point was severe chemo brain, which left me dizzy and unable to drive. I had had some peripheral neuropathy in all four of my treatment rounds, but the only time the peripheral neuropathy got bad enough to affect my walking was in the 3rd round just before my oncologist reduced my Revlimid dose from 25 mg to 10 mg. After that it never became more than a nuisance until 2 weeks after the end of my 4th and final round of treatment.
The PN starting a week after my last dose of treatment until now is strong enough to keep me off my feet and affects my walking more than at anytime during my actual treatment. The electrical current feeling is enough to wake me up at night, and a few times it felt like the bottom of my feet was torn off at night.
Is this sort of delayed effect common? Does it eventually go away, or am I to face this for a long time? I am hoping it will be gone before I go into my stem cell transplant procedure this August.
I completed my 4th round of Velcade, Revlimid, and dexamethasone treatment in the middle of July, and the only side effects I was experiencing at that point was severe chemo brain, which left me dizzy and unable to drive. I had had some peripheral neuropathy in all four of my treatment rounds, but the only time the peripheral neuropathy got bad enough to affect my walking was in the 3rd round just before my oncologist reduced my Revlimid dose from 25 mg to 10 mg. After that it never became more than a nuisance until 2 weeks after the end of my 4th and final round of treatment.
The PN starting a week after my last dose of treatment until now is strong enough to keep me off my feet and affects my walking more than at anytime during my actual treatment. The electrical current feeling is enough to wake me up at night, and a few times it felt like the bottom of my feet was torn off at night.
Is this sort of delayed effect common? Does it eventually go away, or am I to face this for a long time? I am hoping it will be gone before I go into my stem cell transplant procedure this August.
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Doug from AL - Name: Douglas Gerard
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2017
- Age at diagnosis: 55
Re: Neuropathy continuing / increasing post treatment?
I finished my fourth and final round of Revlimid, Velcade, and dexamethasone (RVD) two weeks ago, and I think the neuropathy is getting better. It was not really a problem for the first three rounds, just mild tingling during the second week of treatment and some numbness in the hands and feet on the week off.
At the end of the fourth cycle, however, I was starting to get worried that the numbness in my feet was going to put in danger of falling. Since stopping treatment, I've had an itchy feeling under the skin of my hands – enough to distract me from conversations and the like. This second week off I've started getting shooting pains, mainly in the hands and forearms. Apart from that increase, my hands and feet feel a little more normal each day. Anyway, the stem cell transplant doctor wanted it checked out before the transplant goes ahead.
A visit to the neurologist this week didn't reveal any underlying problems, so the neuropathy was put down to the RVD combination. As follow-up, the neurologist wants to run an EMG test to check nerve function.
As an engineer, I want to quantify and track the neuropathy, but that is proving difficult with it coming and going throughout the day.
Anyway, those are my experiences so far, if it helps anyone.
Tony.
At the end of the fourth cycle, however, I was starting to get worried that the numbness in my feet was going to put in danger of falling. Since stopping treatment, I've had an itchy feeling under the skin of my hands – enough to distract me from conversations and the like. This second week off I've started getting shooting pains, mainly in the hands and forearms. Apart from that increase, my hands and feet feel a little more normal each day. Anyway, the stem cell transplant doctor wanted it checked out before the transplant goes ahead.
A visit to the neurologist this week didn't reveal any underlying problems, so the neuropathy was put down to the RVD combination. As follow-up, the neurologist wants to run an EMG test to check nerve function.
As an engineer, I want to quantify and track the neuropathy, but that is proving difficult with it coming and going throughout the day.
Anyway, those are my experiences so far, if it helps anyone.
Tony.
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Tony Y - Name: Tony Y
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: April 2017
- Age at diagnosis: 49
Re: Neuropathy continuing / increasing post treatment?
As an addendum to my last post, the shooting pains are getting worse. It's like someone is pinching the nerves in my forearms. And it's strong and prolonged enough for me to take Norco (5 mg hydrocodone and 325 mg acetaminophen / paracetamol) to try to reduce the pain. The Norco is only partially effective, and takes about an hour to kick in. It's driving me a bit nuts, to be honesty.
Any suggestions from Beacon members. Can Neurontin (gabapentin) be used for neuropathy? I've tried it before for back pain and it was somewhat effective, but difficult to taper off of.
All the best to everyone,
Tony
Any suggestions from Beacon members. Can Neurontin (gabapentin) be used for neuropathy? I've tried it before for back pain and it was somewhat effective, but difficult to taper off of.
All the best to everyone,
Tony
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Tony Y - Name: Tony Y
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: April 2017
- Age at diagnosis: 49
Re: Neuropathy continuing / increasing post treatment?
Hi Tony,
Sorry to hear that your neuropathy seems to be getting worse.
Gabapentin is indeed one of the drugs commonly used to help people with neuropathy resulting from myeloma therapy.
If you haven't already done so, you should check out the many threads here in the forum about peripheral neuropathy, including those with discussions about different treatments to help reduce neuropathy. Here's a link to the discussions.
The link is listed in the sidebar (in the section titled "Forum Discussions - View By Specific Subject") and also in this post, which is pinned to the top of the "Treatments & Side Effects" part of the forum:
Good luck!
Sorry to hear that your neuropathy seems to be getting worse.
Gabapentin is indeed one of the drugs commonly used to help people with neuropathy resulting from myeloma therapy.
If you haven't already done so, you should check out the many threads here in the forum about peripheral neuropathy, including those with discussions about different treatments to help reduce neuropathy. Here's a link to the discussions.
The link is listed in the sidebar (in the section titled "Forum Discussions - View By Specific Subject") and also in this post, which is pinned to the top of the "Treatments & Side Effects" part of the forum:
Good luck!
Re: Neuropathy continuing / increasing post treatment?
I started with neuropathy in my hands and feet during treatment with Velcade. I have been out of treatment since June of 2015. I take gabapentin (Neurontin) 600 mg three times a day. I have decided that it isn't going away. My legs also hurt to the touch. Wish there was a "cure" for neuropathy!
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NHDeb
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