Last Tuesday night, after taking dex on Monday evening, I was up most of the night, and reading the forums. I ran across the many sufferers of neuropathy praising the foot massages with cocoa butter. I thought it sounded a little crazy, but at this point I'll try anything. I have Oxycontin (oxycodone) for pain, but I won't take it. The PA said I would just get dependent on it. That sounded too close to addicted to me. I can't take anything to damage my kidneys because they took a hit, as I was told, when I got a virus that put me in ICU. The pain can be severe enough to cause nausea.
BUTTTTTT ... The cocoa butter works for me also. My wife massages it in first thing in the morning, when my feet are tight, and in the evening after being on them all day. Don't get me wrong, I still have pain, but it gets me going in the morning, and REALLY makes my evenings better, sometimes totally painless.
I thank the forum for this info, and I hope new readers try this, Good luck!
Don
Forums
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Re: Cocoa butter and peripheral neuropathy
Hi Don
Can you tell me where and what brand you bought? I bought a lotion with cocoa butter which seems to help, but if there is something better out there, I would like to get it.
I am glad to hear it is helping you. It is always wonderful to hear the positive.
Have a great day!
Rhonda
Can you tell me where and what brand you bought? I bought a lotion with cocoa butter which seems to help, but if there is something better out there, I would like to get it.
I am glad to hear it is helping you. It is always wonderful to hear the positive.
Have a great day!
Rhonda
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Rhonda - Who do you know with myeloma?: myself
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 54
Re: Cocoa butter and peripheral neuropathy
Rhonda, I also use cocoa butter and believe that it helps me. I use Palmer's Cocoa Butter Formula with Vitamin E Fragrant Free. I use it more often than Don, i.e., whenever I feel a strange or unusual sensation in my feet. I believe the massaging helps a lot . I do not believe that I have PN yet, but whatever I am experiencing seems to be going in that direction.
If you have PN, can you describe how it started?
If you have PN, can you describe how it started?
Re: Cocoa butter and peripheral neuropathy
Hello Rhonda and Don:
I have posted on this once or twice before. But as Don says, there are new readers all the time. The brand name of the cocoa butter is "Palmer's". I believe that I saw a generic substitute, but from my wife's personal experience, I would go with the brand. It is very thick, so that one large jar lasts a long time. My wife found that applying it before any pain or numbness is the best. Also apply it, if possible, at the moment pain or numbness kicks in. Obviously, if you are out or at work, you may not be able to do this, but you can apply it when you get home. Typically, we applied it at least 3 times a day, maybe more. Regards
I have posted on this once or twice before. But as Don says, there are new readers all the time. The brand name of the cocoa butter is "Palmer's". I believe that I saw a generic substitute, but from my wife's personal experience, I would go with the brand. It is very thick, so that one large jar lasts a long time. My wife found that applying it before any pain or numbness is the best. Also apply it, if possible, at the moment pain or numbness kicks in. Obviously, if you are out or at work, you may not be able to do this, but you can apply it when you get home. Typically, we applied it at least 3 times a day, maybe more. Regards
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JPC - Name: JPC
Re: Cocoa butter and peripheral neuropathy
Rhonda, Palmer's cocoa butter is sold everywhere, in supermarkets, pharmacies, and also online. It is inexpensive, so even if you lather it on generously, it is not a big deal.
Re: Cocoa butter and peripheral neuropathy
I agree. Palmer's Cocoa Butter is a great product. It also soothes dry skin caused by chemo. I use it all over, everyday. It has been a staple in my family for generations. You can also buy it in stick form for easier application. They even make lip balm and a body oil.
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Dana5 - Name: Dana
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 45
Re: Cocoa butter and peripheral neuropathy
Hello Everyone
Thank you all for the information. I bought Palmers but maybe I need to apply more and apply more frequently. I have noticed relief with it but just need to apply more often. When I put it on before bed, I have been able to sleep better. I am currently on Revlimid so I believe I am be experiencing some minor PN. I mostly feel tingling and tightness in my feet, some tingling in my hands.
Enjoy your evening
Rhonda
Thank you all for the information. I bought Palmers but maybe I need to apply more and apply more frequently. I have noticed relief with it but just need to apply more often. When I put it on before bed, I have been able to sleep better. I am currently on Revlimid so I believe I am be experiencing some minor PN. I mostly feel tingling and tightness in my feet, some tingling in my hands.
Enjoy your evening
Rhonda
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Rhonda - Who do you know with myeloma?: myself
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 54
Re: Cocoa butter and peripheral neuropathy
I was diagnosed with multiple myeloma almost 16 years ago! I have tried all treatments in the book, sort of, including numerous clinical trials. I live in Canada, near Toronto, and have been treated at our great cancer hospital, Princess Margaret. I am happy to say that the myeloma clinic is run by top doctors. My oncologist has her own lab at the cancer centre and developed recently her own clinical trial. I feel that I am in good hands.
However, as we all do, the side effects from most drugs seem to bother us all.
I have been on Pomalyst for almost 2 years now and had to stop it just 2 months ago. The side effects of this very efficient drug were just unbearable and we decided to get off it. I must say that I feel great being off the drug, my multiple myeloma counts were excellent last month, and I hope I will continue to feel that great for many more months to come.
Velcade and thalidomide as well as Revlimid, of course, came with severe neuropathy pain in both feet and legs, tingling in both hands as well.
I love to read the Myeloma Beacon and I am always willing to learn about more tricks etc. So, this idea about massaging cocoa butter into feet and legs sounds great to me and I will go and buy some tomorrow right away. Hope it works for me too!
A few years ago I went to Dr. Chousky's Clinic in Toronto. He has an enormous practice, treating only patients for neuropathy pain! He is a very good chiropractor and helps his patients with laser treatments and various exercises. It costs a lot to go there for help, but it was well worthwhile. Unfortunately I stopped going there because I could spend my whole life going there and it is a bit too far for me. Just the drive alone across various very busy highways etc.
Anyway, now we will try cocoa butter! Will let you know what happens.
Should anyone have any questions that I might be able to answer with regards to the disease, how I managed to keep my sanity, etc. I will be very happy to help you out! Good luck to you all!
Illa.
However, as we all do, the side effects from most drugs seem to bother us all.
I have been on Pomalyst for almost 2 years now and had to stop it just 2 months ago. The side effects of this very efficient drug were just unbearable and we decided to get off it. I must say that I feel great being off the drug, my multiple myeloma counts were excellent last month, and I hope I will continue to feel that great for many more months to come.
Velcade and thalidomide as well as Revlimid, of course, came with severe neuropathy pain in both feet and legs, tingling in both hands as well.
I love to read the Myeloma Beacon and I am always willing to learn about more tricks etc. So, this idea about massaging cocoa butter into feet and legs sounds great to me and I will go and buy some tomorrow right away. Hope it works for me too!
A few years ago I went to Dr. Chousky's Clinic in Toronto. He has an enormous practice, treating only patients for neuropathy pain! He is a very good chiropractor and helps his patients with laser treatments and various exercises. It costs a lot to go there for help, but it was well worthwhile. Unfortunately I stopped going there because I could spend my whole life going there and it is a bit too far for me. Just the drive alone across various very busy highways etc.
Anyway, now we will try cocoa butter! Will let you know what happens.
Should anyone have any questions that I might be able to answer with regards to the disease, how I managed to keep my sanity, etc. I will be very happy to help you out! Good luck to you all!
Illa.
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Irmgard Theegarten
Re: Cocoa butter and peripheral neuropathy
I'm happy to read that cocoa butter has worked well for so many people responding to this thread.
However, I think I'm an exception to the rule here. Once again, an example that multiple myeloma and its side effects are highly individualistic.
My doctor suggested massaging with cocoa butter in the early days of my RVD treatment when I started to experience some beginning signs of peripheral neuropathy (around Feb 2013). I did cocoa butter massages on my feet and hands regularly, almost every night for a couple of years. I stopped the cocoa butter a few months ago because it was a lot of trouble and messy. Since stopping that, my PN has certainly not gotten any worse, and perhaps it's a little better.
I should also mention that I take Lyrica, which was a huge help in stopping the pain that started around April 2013. Since that time, I've mostly had numbness, rather than pain. I've also been taking Cymbalta for about 6 months. That seems to have helped reduce the numbness. I also take Alpha Lipoic Acid, L-Carnitine, and Vitamin B-100 complex as supplements to deal with PN, again all based on my doctor's recommendation.
Since the numbness is mainly in my feet, I've recently started doing foot movement exercises (like rotating them in circles or tracing the letters of the alphabet with them). That seems to be helping them as well.
So my uneducated theory is that what's most important is stimulating the nerves through the massage and exercise, rather than cocoa butter per se. At least it seems that way for me.
Mike
However, I think I'm an exception to the rule here. Once again, an example that multiple myeloma and its side effects are highly individualistic.
My doctor suggested massaging with cocoa butter in the early days of my RVD treatment when I started to experience some beginning signs of peripheral neuropathy (around Feb 2013). I did cocoa butter massages on my feet and hands regularly, almost every night for a couple of years. I stopped the cocoa butter a few months ago because it was a lot of trouble and messy. Since stopping that, my PN has certainly not gotten any worse, and perhaps it's a little better.
I should also mention that I take Lyrica, which was a huge help in stopping the pain that started around April 2013. Since that time, I've mostly had numbness, rather than pain. I've also been taking Cymbalta for about 6 months. That seems to have helped reduce the numbness. I also take Alpha Lipoic Acid, L-Carnitine, and Vitamin B-100 complex as supplements to deal with PN, again all based on my doctor's recommendation.
Since the numbness is mainly in my feet, I've recently started doing foot movement exercises (like rotating them in circles or tracing the letters of the alphabet with them). That seems to be helping them as well.
So my uneducated theory is that what's most important is stimulating the nerves through the massage and exercise, rather than cocoa butter per se. At least it seems that way for me.
Mike
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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
10 posts
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