Peripheral neuropathy

[Cherylonthedock]

Hello, I am new here. I was diagnosed with Bcell lymphoma 5 yrs ago and have NAD after 9 months of RCHOP treatment. I see my oncologist for blood work and a PET SCAN EVERY 6 months. On my last visit the PET lit up showing fatty liver disease which worries me. I have diabetes type 2 also and high cholesterol and triglycerides. I developed severe peripheral neuropathy in both feet while still receiving RCHOP and it has gotten progressively worse. I am on topramax 50 mg twice daily. Like many of you fatigue is a major problem. Any suggestions would be much appreciated. Thank you for this site!! It makes me feel I'm not alone.

[Shar0n Volunteer]

Hi Cheryl, Sorry to hear you are going through peripheral neuropathy after getting through the chemo for lymphoma. I am sure there are other people here who can relate and may share how they are dealing with it. There may be dietary adjustments you can make to help with the liver problem but I don't know enough about it to be of any help. Hang in there and if you can improve one symptom at a time,maybe that will help.

[Judyhoneycomb]

I too have the neuropathy in both feet after RChop and it has gotten worse. Fatigue is terrible. I tried some meds for neuropathy and side effects were bad. so I don't take anything. I walk better barefoot with just footies. Sorry you too are having same symptoms. And I too had the same fatty liver show up on my last PET scan. Oncologist is not concerned.. so here we are... what's next..?. Just hope the Rituxun keeps me in remission. When they told me stage IV Mantel Cel Non Hodgkins Lymphoma in April 2015, I honestly didn't think I would be here today. So the alternative to having neuropathy and not being here is acceptable... Sorry I'm not any help... Keep your hopes up....:o}

[oncloudnine in reply to Judyhoneycomb]

I also have neuropathy in both feet following RChop treatment of mediastinal B-cell lymphoma. I also feel fatigued all the time. I was a large guy, but lost 102lbs. in the past year. Still don't have much of an appetite. Not a bad thing I guess. The treatment as of now appears to have been effective, blood work and scans show total remission. There is still a bit of the mass left but it is not active. I do think about it returning, but I try not to let it control me. Thanks for your thoughts, and I wish you only the best of luck, and as they say on Star Trek, live long and prosper.

[Judyhoneycomb in reply to oncloudnine]

thank you and glad you are in remission. heck of a way to loose weight, but at least we are here...

[R16728]

I have a neuropathy issue in my feet and lower legs that bothers me at night or in the swimming pool. Tylenol helps and I keep hearing pads around for watching TV or reading. I find the temperature of my legs is critical to my comfort. I've also used Voltaren on my ankles at night. So far I'm coping but I know it's getting worse so my next step may be prescription drugs. Good luck! Let us know what works for you.

[Judyhoneycomb in reply to R16728]

I too have to have my feet covered all the time or socks on...

[moors3029]

My husband has Mantel Cell Lymphoma and has been through RChop, stem cell transplant and Bendemustine therapy. He came down with severe peripheral neuropathy in his left foot due to coming down with a case of shingles. He is on Gabapentin 1800 mg. a day. It keeps it in control. I also give him a foot massage before he goes to bed and that seems to help. A year ago when he came down with the neuropathy I couldn't have even touched his foot due to the pain. So it is better.

[Cherylonthedock in reply to moors3029]

Thank you for your reply. I had side effects to gabapentin but am on topramax. It gives a little relief but not much. Also use frankincense oil topically but neuropathy continues to progress. I'm glad your husbands pain seems to be getting better

[Judyhoneycomb in reply to moors3029]

thank you and he is lucky to have you help with the massage. I had some bad side effects with the Gabapentin... mind altering. so i can't take it..

[Dragongranny64]

Hi Cherylonthedocks, I also had diffuse big cell lymphoma and have been in remission following RChop21 for 6 months. I have been diagnosed with neuropathy in both feet and have been put on Lyrica first 75mg which didn't work but I am now on 300mg which gives me a good night's sleep but unfortunately it doesn't work during the day and I am left crippled on bad days sorry to say. Bare feet are much, much better than wearing shoes/sandles😀

[Judyhoneycomb in reply to Dragongranny64]

Hi Dragongranny64, somehow I missed reading your reply. Sorry for your neuropathy too. I am still in limbo with it and no results or help... seems to be curling toes now and I have hammertoes.. I have been and still going to physical therapy to improve walking and balance, but it sure doesn't help my feet. I feel better barefoot. I hope yours hasn't gotten any worse...

[suedtracy]

Diffuse Large B-cell Non-Hodgkins Lymphoma, 2010, RCHOP. Also have neuropathy in both feet. I guess each person is different. Gabapentin provides a good night's sleep, but that is it. I don't even take it all the time. Standing feels better than without weight on my feet. I no longer like the feel of walking without shoes, except on carpet. I have not found anything that really makes any difference. Would love a cure, but am glad to be healthy otherwise. ☺

[yooper5]

I've mentioned this in previous posts. I am two years post treatment for NHL. I also have neuropathy, but it is much improved following the food suggestions from Dr. Ken W. Crawford. His book, You Are What THEY Eat. is life-changing. He has two more books coming out this spring that are must reads! I have read them in advance. Dr. Ken is on Facebook, Like him.