I just wanted to give my input on neuropathy from Velcade treatments.
I have been on Velcade and dex for about 5 months. I started having some numbness in my toes and really nowhere else. The real issue was bone pain in my lower legs, mostly shin area, and my feet. I was prescribed 100 mg of gabapentin 2 times per day with no relief. Then 300 mg 3 times per day; still no relief. I was given some Lyrica samples before taking the gabapentin, and it worked like a charm; no pain after a few hours of taking the Lyrica.
The issue was my insurance and the high cost of Lyrica. They wanted me to try gabapentin at a higher dose for several weeks before approving the Lyrica. Six weeks later, Lyrica was approved.
I now take 100 mg of Lyrica 3 times per day. It has worked so well that I am going to try twice per day and see if that works. The only issue is that it makes me a little sleepy for a short while.
Like with most drugs, everyone has different results. Best of luck.
Castaway
Forums
-
Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
Re: Neuropathy pain - suggestions other than gabapentin?
Here is a really simplistic thought/suggestion on neuropathy from Velcade, it is based on our experience, plus some commentary from knowledgeable nurses that we deal with.
Try cocoa butter before it starts. If you feel it a little, hit it with extra cocoa butter. If it gets worse, hit it with a boatload more of cocoa butter.
The stuff is reported to work. Try to head off the PN at the pass. Hit it obsessively with the cocoa butter. If the PN gets to stage 3/4, this may not be helpful. But if you were in stage 3/4, you should try this first before you forego the Velcade that very well could be smacking your myeloma.
Regards
Try cocoa butter before it starts. If you feel it a little, hit it with extra cocoa butter. If it gets worse, hit it with a boatload more of cocoa butter.
The stuff is reported to work. Try to head off the PN at the pass. Hit it obsessively with the cocoa butter. If the PN gets to stage 3/4, this may not be helpful. But if you were in stage 3/4, you should try this first before you forego the Velcade that very well could be smacking your myeloma.
Regards
-
JPC - Name: JPC
Re: Neuropathy pain - suggestions other than gabapentin?
I had read about using cocoa butter earlier in this forum, but could not again locate the post when I looked for it.
Based on that earlier reading, I bought some inexpensive Palmer's fragrance free cocoa butter and tried using it whenever I felt strange sensations in my feet or hands (I am on Rd and will soon start Velcade and am concerned about possible PN).
What JPC writes here about cocoa butter may sound implausible, but my own experience confirms what he or she writes. The worrisome sensations in my hands and feet disappear very quickly. I have no idea why.
In addition, I put cocoa butter on my face to help me deal with the red flush that invariably develops the day after I take my weekly dose of dexamethasone. The redness disappears. The cocoa butter does not seem to clog my pores, to my genuine surprise.
I am a convert to cocoa butter. I never used it before reading about it here in the forum. I should add that even the fragrance free cocoa butter has some vague chocolate odor, but it is not repulsive, at least for me.
I am so glad that JPC has brought this matter to other readers' attention. It may be of considerable help.
Based on that earlier reading, I bought some inexpensive Palmer's fragrance free cocoa butter and tried using it whenever I felt strange sensations in my feet or hands (I am on Rd and will soon start Velcade and am concerned about possible PN).
What JPC writes here about cocoa butter may sound implausible, but my own experience confirms what he or she writes. The worrisome sensations in my hands and feet disappear very quickly. I have no idea why.
In addition, I put cocoa butter on my face to help me deal with the red flush that invariably develops the day after I take my weekly dose of dexamethasone. The redness disappears. The cocoa butter does not seem to clog my pores, to my genuine surprise.
I am a convert to cocoa butter. I never used it before reading about it here in the forum. I should add that even the fragrance free cocoa butter has some vague chocolate odor, but it is not repulsive, at least for me.
I am so glad that JPC has brought this matter to other readers' attention. It may be of considerable help.
Re: Neuropathy pain - suggestions other than gabapentin?
I have heard this too, but I never thought to use it for my peripheral neuropathy (I only have MGUS). I had been taking 1,200 mg gabapentin which gave me significant relief, but also side effects I could not live with, so now I'm back to having a lot of pain and as you say, strange sensations. I'll have to tell my husband so we can pick up some. Is this something you can just buy at a local pharmacy? And is it thick as opposed to thin like hand lotion?
-
Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: Neuropathy pain - suggestions other than gabapentin?
Hi, Toni. You can buy it at the pharmacy or on line. It is a moisturizer, but perhaps of somewhat thicker consistency. Read the label and make sure that it lists cocoa butter as the first ingredient. I do not guarantee that it will work for you as it does for me, but I do recommend that you try it.
Re: Neuropathy pain - suggestions other than gabapentin?
I'm willing to try it. No harm no foul. At the least it will make for softer feet. 
-
Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: Neuropathy pain - suggestions other than gabapentin?
I've used cocoa butter cream as part of my anti-peripheral neuropathy effort since I began induction therapy with RVD over two years ago. I just massage my feet and hands with it before bedtime.
It has not been a magic cure-all for me, but I do think it helps a little. There have been some periods where I've gotten lazy and skipped the massage for several days, and I think my PN gets slightly worse during those times.
I also take alpha lipoic acid, L-carnitine, vitamin B-100 complex, Lyrica, and recently started Cymbalta. All of these, plus the cocoa butter massages, are based on my myeloma specialist's recommendations / prescriptions.
It's been 1 1/2 years since my last dose of Velcade, but I still have some numbness in my feet and toes, and a little in my fingers. I'm on Revlimid maintenance and wonder if that contributes to the lingering PN. My myeloma specialist initially thought no, but now seems to think it's possible.
Mike
It has not been a magic cure-all for me, but I do think it helps a little. There have been some periods where I've gotten lazy and skipped the massage for several days, and I think my PN gets slightly worse during those times.
I also take alpha lipoic acid, L-carnitine, vitamin B-100 complex, Lyrica, and recently started Cymbalta. All of these, plus the cocoa butter massages, are based on my myeloma specialist's recommendations / prescriptions.
It's been 1 1/2 years since my last dose of Velcade, but I still have some numbness in my feet and toes, and a little in my fingers. I'm on Revlimid maintenance and wonder if that contributes to the lingering PN. My myeloma specialist initially thought no, but now seems to think it's possible.
Mike
-
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 pain - suggestions other than gabapentin?
For those who are interested, cocoa butter has been mentioned a number of times here in the forum as a possible way to address peripheral neuropathy. This link will take you to a list of postings that mention cocoa butter.
-
Boris Simkovich - Name: Boris Simkovich
Founder
The Myeloma Beacon
Re: Neuropathy pain - suggestions other than gabapentin?
Joneman wrote:
Have you had any side effects from the morphine?
I have neuropathy and tried gabapentin, Lyrica, and a few other drugs. Nothing worked long term until I switched to morphine sulfate extended release (MS Contin). I have been using this twice a day for 4 years.
Have you had any side effects from the morphine?
-
Jfortier721
Re: Neuropathy pain - suggestions other than gabapentin?
I was taking Lyrica (pregabalin), Cymbalta (duloxetine) and alpha lipoic acid. All was fine in my world and then Lyrica was swapped with gabapentin because my insurance changed.
It is killing me! I have zero appetite and am incredibly tired all the time. I have a hard time getting past 2:00 at work. At night, I need to go to bed between 8-9:00 pm. My doctor is going to file an appeal with my carrier, but the one thing I've come to realize is that regardless, I am dropping the gabapentin. Oops, failed to mention the peripheral neuropathy is getting worse!
It is killing me! I have zero appetite and am incredibly tired all the time. I have a hard time getting past 2:00 at work. At night, I need to go to bed between 8-9:00 pm. My doctor is going to file an appeal with my carrier, but the one thing I've come to realize is that regardless, I am dropping the gabapentin. Oops, failed to mention the peripheral neuropathy is getting worse!
-
Mank - Name: Mank
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: February 2017
- Age at diagnosis: 56
20 posts
• Page 2 of 2 • 1, 2
Return to Treatments & Side Effects