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A MyMyelomaTeam Member asked a question 💭
Sun City West, AZ

I developed peripheral neuropathy during my induction therapy from chemo(velcade). I've been living with this since early 2023. Post my SCT I have tried so many things most of which I call scams. In addition 3 different neurologists all saying nothing can be done and prescribing gabapentin and the like. These really didn't help much so I stopped them all. Actually the side affects of those weren't worth the little bit of relief I got. I also have stage 4 kidney disease from the cancer so drugs… read more

March 26
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A MyMyelomaTeam Member

Hi Ron,
My mother had Stage IV ovarian cancer for 8 years. She had heavy duty chemo. She never got neuropathy. I believe it was because she took Nutritional Yeast. She would put 2 heaping teaspoons of Nutritional yeast in her drinks. (Milk, or juice.) With the milk she added a little (1/2 tsp ) unsulphered blackstrap molasses. She did this multiple times a day. Nutritional yeast has lots of B vitamins which protects the nerves. Hopefully it would help you now even though you already have the damage. Not sure, but it’s worth a try. I buy Bob’s Red Mill brand at Albertsons, a grocery store near me. It’s in the baking section. Health food stores sometimes sell it in bulk. I like Bob’s because it mixes and it’s not bitter. You could also try taking B Complex vitamins. She also took Cod liver oil. Just one spoonful, each morning. I’m sorry you are suffering from this. I’ve had no treatment since I am Smoldering, but I’ve had neuropathy since 2014. Fortunately, I started taking the Nutritional yeast in the last few years. My feet burn and my forearms and hands are hot.
Paula🌹

March 26
A MyMyelomaTeam Member

I have not found a cure. I am about 3 1/2 years into neuropathy and it got maybe 30% better. What I did early on was use a pain management specialist. The Gabapentin worked during the day but not at night. So we had to try a few different drugs until we discovered 5mg Methadone at night really helped. I am still on this regiment today. I now work with and get these scripts through Palliative care.
But there are bad days and I take an extra Gabapentin. And I still have days with edema (feet swelling) which really makes it bad.
But what sux is this never goes away. There is always pain to some degree and it gets old. See if you can get a pain management specialist to work with you. And i hope you find a solution to your problem soon.

March 28
A MyMyelomaTeam Member

Hi Ron.. know it well! The best my duke palitive care has come up with is duloxetine 60 mg and methadone 10 mg. The peripheral neuropathy is still there but manageable. The numbness is still there but pain is low.

March 28
A MyMyelomaTeam Member

I’m also dealing with neuropathy and wanted to share my experience — it might help.

I was initially on Gabapentin (500 mg at night and 200 mg in the morning), but honestly, the pain and cold feeling in my feet were still the same.

After I spoke to my hematology doctor, he changed my medication to Pregabalin 25 mg at night, and I can say I’m feeling better than before. Not perfect, but definitely some improvement.

On top of that, I also try some simple daily care I wear thick socks almost 24/7 to keep my feet warm
Before bedtime, I use warm water to soak and gently massage my feet

I also made a few lifestyle changes I drink more water, avoid sugar and fizzy drinks, I daily drink turmeric , ginger with honey , pure young and lemon with honey all home made but l drink alternately . I try to keep my feet warm with socks and warm water soaks.

It doesn’t cure it, but it helps make it more manageable day by day.
And can feel the difference

These small things don’t cure it, but they help me feel more comfortable.

We are all different, so what works for one person may not work for another, but I hope sharing this helps someone here.

I’ve learned that it’s really about finding what works for your body, step by step. If one medication isn’t helping, it’s worth discussing other options w

One For All And All For One
You are not alone
we keep moving forward together 🙏

March 28
A MyMyelomaTeam Member

Ron, I feel your pain. I too suffer from severe neuropathy. I’ve tried the creams and Gabapentin
I’m now on Lyrica 300mg 3 times a day and I recently started the supplement, Nervive. It holds me, only if I take meds before the burning starts as well as the swelling of my fingertips. I have neuropathy in feet and hands. It’s a battle everyday. It’s a part of daily life. I accept it and keep it moving. I’m also dealing with constant buzzing in my ears, 24/7. All my waking hours I hear it. I know that the Bible holds out a better future, where there will be no more sickness, I have a deep conviction. It sustains me, and I keep going. BECAUSE I still must
Pay bills
Prepare meals
Keep our home clean
Make sure lawn is maintained ( I don’t do it)
Do laundry
Do my own taxes
Grocery shopping
Stay on top of our med supply
Jehovah God, has given me strength to endure.

March 27

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