Mantle cel Non Hodgkin's Lymphoma

[Judyhoneycomb]

I was diagnosed April 2014, stage IV. Had Rchop and now on Rituxin. Spleen enlarged, nodules from neck to groin included. Was in bone marrow. In remission. Neuropathy in feet and need cane to walk, sometimes walker at night. Bad taste in mouth all the time. Foul urine odor. Fatigue.

[Shar0n Volunteer]

Welcome to NHL Friends, Judyhoneycomb. I have follicular NHL also diagnosed in 2014. Somebody here who has gone through RCHOP/Rituxin may have something to add about side/after effects as it seems to be the most common protocol for treatment. Glad to hear that it has put you in remission - that is good news and encouraging for others facing into it.

[Tinkerbellcgy in reply to Shar0n]

I have Follicular lymphoma first in 2008 and relapsed in 2016. I was treated with R-CHOP in 2008 and with R-B (Rituximab + Bendamustine) in 2016. I always have difficulty with Rituximab and while receiving R-CHOP, I experienced difficulty with Vincristine and it was susequently removed from the CHOP chemo cocktail. Judyhoneycomb, the neuropathy in your feet may be caused by the Vincristine. Speak with your oncologist about this possibility.

[Judyhoneycomb in reply to Tinkerbellcgy]

Thank you. They did remove that from my early R-Chop when I complained about fingers/feet... but it is still bad if not worse and I thought perhaps the rituxin is causing it. Have mentioned it to oncologist, but no suggestions other then Gabapaten which I tried and terrible side effects... so I am just putting up with it. Walk better barefoot and slipper socks then with shoes, and sometimes don't capitalize on my keyboard because little finger doesn't push hard enough... LOL

[Glenmeadow in reply to Judyhoneycomb]

I am a newly diagnosed NHL patient and so don't have chemo experience yet but I have another medical condition )myasthenia gravis) which produces constant buzzing in my hands and feet. I take cymbalta and it really does turn the volume down. Cymbalta is also an antidepressant and the downside is that trying to go off of it or taper down is extremely hard to do. But it agrees with me very well don't feel medicated or different at all except my body is quieter if that makes sense

[Judyhoneycomb in reply to Glenmeadow]

good luck glen with your treatment. I have neuropathy or numbness in fingertips and feet .. feet very bad. walk better without shoes..

[Gailbarnes in reply to Glenmeadow]

I have peripheral neuropathy, cymbalta works great for nerve pain. Unfortunately I am on another antidepressant and​ the cymbalta wasn't helping with the depression. So I had to go off of it, they were afraid of me having a serotonin overdose. It does work great though.

[Judyhoneycomb in reply to Gailbarnes]

sorry to hear this Gail... hope things settle down soon and very soon.

[BelindaTupper in reply to Tinkerbellcgy]

My treatment included the R-B combo as well with 2 years of Rituxin. 2 more treatments to go. Yay! A friend had NHL a few years ago and treated with RChop and is doing well, too. Everything about our two situations was so different. Didn't even seem like the same illness. It gives me hope to know that it's so unique to each person. Makes me feel like I might have a tiny bit ( or maybe more) control over how things go for me.

[Tinkerbellcgy in reply to BelindaTupper]

Everyone's symptoms of their particular type of NHL and reactions to their treatment are always so different. I sincerely believe that incorporating a healthy dose of positivity into one's life throughout the experience greatly enhances one's outcome. It seems to have worked for me through my 3 NHL experiences in the last 8 years.

[Janekite2015]

I was diagnosed 5 years ago with mcl. Same treatment as yours over a two year period, in remission since. Fatigue, some chemo fog still and blood counts have never come back up to normal. I'm not complaining as long as I stay in remission. Best wishes!

[Judyhoneycomb]

thank you.... and hope all continues well...