Neuropathy

[llupp]

What can I do to help my hubby he has permanent neuropathy after finishing his course of Oxiplatin. The doctor told him to report any issues with the oxi hubby being stubborn and wanting to be Ned he lied to the doctor. Now 2 years later he has serious issues with his feet they are always cold and in pain. So I am asking all of you what have you done for this any and all treatments. What has work and not work for you. Thanks in advance.

[Nik Colon]

I'm not an expert, all I have heard is Gabapentin (I actually still have some left, lol), but I'm sure others here have better/more advice.

[llupp]

He was on Gapapentin for a year and a half was taking up to 6 a day. He said it didn't help enough and was so tired and loopy all the time.

[Fluff Bottom]

viewtopic.php?f=1&t=53638&p=425437&hilit=Acetyl#p425437

I ordered some of these supplements. I will let you know if they help me at all.

[chemo sabe]

I have permanent neuropathy from oxaliplatin. I take Cymbalta. According to my Onc, it is the #1 drug for the treatment of the chemo induced neuropathy. It does not make the symptoms go away but it does take the edge off. I have tried supplements but they did nothing except to part me from my money.

[SugarBubbie]

I can't handle the drugs so I've tried other options. I have Pedag solar insulating insoles that I can move to any shoe. Keeps my feet really warm on the bottom. Also, I buy only 100% merino wool socks. I use a heated throw at the bottom of my bed every night. I put a quilt on top to keep the warmth in. All can be found on Amazon. Hope these ideas help. Good luck.

[cashmere]

I have permanent neuropathy now. I have had it since 2008. I have tried all drugs but I take Lyrica, it is the only one that gives me relief. I take it at night and I can get through 24 hours. The only thing I can not do is stand in one place for any length of time. I can walk forever!!

[Carolinabluetec]

I am 18 months post chemo (Xeloda). I have neuropathy in hands and feet. I have gone the usual route with merino wool socks year round and insulated insoles in colder weather. I am taking 1800 mg of Gabapentin (one dose in the morning) and my doctor wants to also add some Lyrica to my next cycle rather than raising the Gabapentin dose any higher. I get a great deal of relief from the burning pain in my feet from a compounded cream of Baclofen 5% / Amitriptyline HCL 2% / Ketamine HCL 5% in Lipoderm which has to come from a compounding pharmacy. Insurance does not cover it but a months supply (150 grams) runs about $140. And it is well worth since it stops the pain in a few minutes and last 3 or 4 hours at least.

[helen098]

I tried lyrica, cymbalta all the gamas vitamin b,folic acid
Vicoden and other pain meds
For me nothing helped I was looking into the surgery where they cut the nerves
When my colon club friends said to try a pain management doc
It's been over three years and with 10 mg a day of methadone
In a forget the pain
We need to be your own advocate
I told every doc I saw about the pain and NO ONE mentioned a pain doc or methadone

If nothing works try the pain management doc
All you have to lose is a copay and a hour or so
Without the methadone I would have done something stupid
Like step in front of the subway
The pain was that bad
Pm me if you want to talk more

[Rob in PA]

Nothing worked for me. have had neuropathy for eight years now. Biofreeze, masks it sometimes. I wear socks to bed every night.

[nicola smith]

I also recommend the pain doc or clinic. The pain clinic attached to our area hospital reserves one day a week for cancer patients...otherwise, the wait would be very long. The doc I saw said there is a program of treatment they use, trying one thing after another, until they find one that works. Everybody is different.

I had tried gabapentine and an array of OTC products before going to the clinic. At the clinic, they started out with nortyptaline - and it did work...with a side effect of feeling foggy and dry-mouthed until my body adjusted after a couple of months. Nortryptaline did not end the neuropathy but it took the edge off. I was satisfied with that but could have gone futher with other tests if I'd wanted to.

[Nik Colon]

I tried lyrica, cymbalta all the gamas vitamin b,folic acid
Vicoden and other pain meds
For me nothing helped I was looking into the surgery where they cut the nerves
When my colon club friends said to try a pain management doc
It's been over three years and with 10 mg a day of methadone
In a forget the pain
We need to be your own advocate
I told every doc I saw about the pain and NO ONE mentioned a pain doc or methadone

If nothing works try the pain management doc
All you have to lose is a copay and a hour or so
Without the methadone I would have done something stupid
Like step in front of the subway
The pain was that bad
Pm me if you want to talk more

No one mentioned a pain doc/Palliative doc? I was told to see one right after my dx. The current one I see is great. I'm not on meds currently for pain, but if I need them again, I know he will be there for me.

[WriterGirl1969]

My neuropathy is from something other than chemo, but I can certainly commiserate with the pain and discomfort. For my feet, I wear shoes absolutely all the time, even if just good solid slippers for night-time potty trips. Going barefoot at all just makes them hurt horribly. In spite of my feet being cold, I find that icing them helps with the pain. Sometimes ice then heat shocks the nerve endings and backs them off a little.

And the nicest suggestion, try some massage, especially reflexology. In spite of my feet being numb, they are also hypersensitive (just scraping the toenails feels like someone is ripping them off), and I get a lot of foot and lower leg cramps. I have found massage to be incredibly good therapy. It increases blood flow to the nerve endings, eases the pain and cramping, plus it just feels really darn good. My oncology clinic has even noted they have someone there who can provide this service.

Hope this helps! Best of luck, and congrats on the continued NED!!