Wanted to share my husband's neuropathy med -it works!

[CRguy]

Hey homie !!!
hope hubby is doing well after the recent Sx
sending best wishes to your family

I agree, not all folks who read will reply
and sometimes when they find a solution they move along with their lives and don't re-post.

BUTT that is not to stop those of us who wish to be here to continue to dialogue and help where we can

You are author of 2 epic topics here :
1. pain cream
2. daily enema regimen

keep On keepin' on my friend

Cheers and Harmony
CRguy

[WriterGirl1969]

I suffer from terrible neuropathy. When I saw your initial post, I made sure to print out all of the notes on what was in this cream. I brought it to my next oncology appointment, but they said I would need to take it to my GP as their pharmacy did not do compound creams like this.

Fast forward to the fact that 3 out of 4 of my doctors all left their practice to go somewhere else between Feb and Mar, and you land with me at a new GP in April. I pulled out my paper, and said, "I need THIS." He tried to sell me on Cymbalta instead, which I firmly negated. He wrote me a script for the cream. Fortunately for me, a pharmacy less than a mile from my house is one of only 3 in the greater area that makes this type of mixed compound. I just got it last week, and have been EAGER to get on and find this thread and post my results.

SO - the cream is indeed a GODSEND. My particular mix varies a little from the original mix noted, but still contains the main components. I don't have my copy of the script in front of me (I made a copy to be sure I could tell you all the exact mix), but I know they said it has 4 different controlled substances in it. The ketamine, of course, a muscle relaxer, an anti-inflammatory and a numbing agent. The pharmacist told me that when she is mixing the powders, if she gets it on her gloves and inadvertently rubs her chin or lip, she feels as if she's been to the dentist. I thought it was a great way to describe the level of impact / action.

I agree that it eases the pain, and in addition it has a prolonged effect for me in that if I apply it regularly it seems to prevent my feet from getting as sore to start with. Plus (and this was a TRUE gift for me), it has all but eliminated the severe foot and leg cramps I have been getting all night long over the last few months. That alone makes this worth it to me.

I have noticed one sort-of negative, which is that when my feet do get painful I notice it more, but I think this is due to the fact that I had become so used to being in pain all the time that I'd forgotten what it felt like to *not* have pain. Now that I have moments where my feet feel pretty good, the pain seems even more apparent when it comes - but the good news is that this only happens when I'm not consistent with applying the cream, or when I do a really unusual amount of walking or standing on hard surfaces, or do something stupid like going barefoot.

So in a nutshell and to quote my pharmacist: "This is the holy grail of neuropathy treatments."

Hallelujah! Thank you SO much for starting this thread!!!
--Tracy

[bitchslapped]

Interesting so far that none of the peripheral neuropathy reported is chemo induced.
So glad this cream is helping

BS

[tammylayne]

[mtipte]

Just a question. My mum will probably have neuropathy from xelox as she's about to start this treatment tomorrow. So will this help her in some way? Can I apply it before this happens? I mean as a means of prevention? Any help?

Thanks.

[tammylayne]

Hi there...I am not a doctor so I can't say if this has preventative abilities, but there is always the possibility that your mom won't need it!! Not everyone ends up with this issue, and for many people it happens later, not from minute one. Keep this thread in mind, but for now, my thoughts are to not borrow trouble; meaning don't worry about this side effect until it actually happens, and hopefully it NEVER will!!

And by the way, thanks for being a great daughter/care giver. You obviously are making sure you learn as much as you can for your mom's care It can be an overwhelming journey for everyone involved. Good luck to your mom!!!

[Maia]

Tammy, I shared the recipe you shared in other forum --ColonTown, in Facebook--, pointing people here with the link, of course, so they can read for themselves and hopefully report, if they try this.
A question I got --for you and others here-- is if this cream helps with the feeling of numbness, not only with the pain, or if it in fact doesn't contribute to the numbness --as a mechanism to 'mask' the pain.
Hope I transmitted that well --I only can imagine, fellows, how this feels. Wishing you all the best.

[mtipte]

Hi there...I am not a doctor so I can't say if this has preventative abilities, but there is always the possibility that your mom won't need it!! Not everyone ends up with this issue, and for many people it happens later, not from minute one. Keep this thread in mind, but for now, my thoughts are to not borrow trouble; meaning don't worry about this side effect until it actually happens, and hopefully it NEVER will!!

And by the way, thanks for being a great daughter/care giver. You obviously are making sure you learn as much as you can for your mom's care It can be an overwhelming journey for everyone involved. Good luck to your mom!!!

Thanks, I'm her son though hehe.

[WriterGirl1969]

Tammy, I shared the recipe you shared in other forum --ColonTown, in Facebook--, pointing people here with the link, of course, so they can read for themselves and hopefully report, if they try this.
A question I got --for you and others here-- is if this cream helps with the feeling of numbness, not only with the pain, or if it in fact doesn't contribute to the numbness --as a mechanism to 'mask' the pain.
Hope I transmitted that well --I only can imagine, fellows, how this feels. Wishing you all the best.

Great question, Maia (hopefully I'm interpreting what you're asking correctly). For me, the neuropathy presents as both numbness and pain. It's like the external is very numb, yet inside and around things like toenails it's very painful. The only comparison I can give people is that if you were to stamp barefoot on wet cement for about half an hour, your feet might feel like this.

The cream does not, in my experience, lessen or address the numbness. In fact, there is a numbing agent in it. My understanding is that it's meant to help mitigate the pain. This is reinforced by the painkiller, the anti-inflammatory, the muscle relaxer and the numbing agent that are part of the ingredients. However, the pharmacist did say it is supposed to help increase blood flow to the area it's being applied to, so perhaps if the nerve damage is actually in the feet, this might help. Nerve damage stemming from the spine is not actually in the foot, just presenting in the nerves there, so probably not much curative aspect to treatment even when applied directly to the foot. Does that make sense? Hope it helps, and of course, this is just my personal experience and speculation. I'm not doctor or chemist by any means.

--Tracy

[mtipte]

Tammy, I shared the recipe you shared in other forum --ColonTown, in Facebook--, pointing people here with the link, of course, so they can read for themselves and hopefully report, if they try this.
A question I got --for you and others here-- is if this cream helps with the feeling of numbness, not only with the pain, or if it in fact doesn't contribute to the numbness --as a mechanism to 'mask' the pain.
Hope I transmitted that well --I only can imagine, fellows, how this feels. Wishing you all the best.

Great question, Maia (hopefully I'm interpreting what you're asking correctly). For me, the neuropathy presents as both numbness and pain. It's like the external is very numb, yet inside and around things like toenails it's very painful. The only comparison I can give people is that if you were to stamp barefoot on wet cement for about half an hour, your feet might feel like this.

The cream does not, in my experience, lessen or address the numbness. In fact, there is a numbing agent in it. My understanding is that it's meant to help mitigate the pain. This is reinforced by the painkiller, the anti-inflammatory, the muscle relaxer and the numbing agent that are part of the ingredients. However, the pharmacist did say it is supposed to help increase blood flow to the area it's being applied to, so perhaps if the nerve damage is actually in the feet, this might help. Nerve damage stemming from the spine is not actually in the foot, just presenting in the nerves there, so probably not much curative aspect to treatment even when applied directly to the foot. Does that make sense? Hope it helps, and of course, this is just my personal experience and speculation. I'm not doctor or chemist by any means.

--Tracy

Hi Writergirl,

I'm just curious but I wonder how you developed neuropathy if you had only Xeloda monotherapy.

Cheers.

[Maia]

Hi, Tracy --you, great WriterGirl
Thank you so much for your reply --I feel you understood what I meant and I do understand your answer. I do know how difficult it is, to describe this kind of sensations.
I'll report to the other forum soon. Hoping to hear also from more users! : )

[WriterGirl1969]

Hi Writergirl,
I'm just curious but I wonder how you developed neuropathy if you had only Xeloda monotherapy.
Cheers.

Hey there. Was just writing to you on your other thread.
I developed neuropathy (both feet) after a botched epidural when I had my son. He just turned 6 this week, so that's how long I've had it. Started at the base of my toes, sort-of between them, and gradually increased over the years.

Hugs and Prayers,
Tracy

[WriterGirl1969]

Hi, Tracy --you, great WriterGirl

LOL - Hi Maia.

Thank you so much for your reply --I feel you understood what I meant and I do understand your answer. I do know how difficult it is, to describe this kind of sensations.
I'll report to the other forum soon. Hoping to hear also from more users! : )

Excellent. Glad to hear word is spreading. And you're right, it's such an odd combination, very hard to describe. Then I get X-Rays of my feet and nothing is actually wrong with them there... just weird. They feel like they should look like hooked little claws, yet there they sit, normal-looking as can be. Devilish little things.

[bitchslapped]

I was wondering about the numbness too & the fact it had a numbing agent. Glad to hear a reply.

[tammylayne]

My husband's response is that for him it takes away the pain, the feeing of frost bite...the intense pins and needles. He can wear socks and shoes...without it...these things are almost impossible.