Member Neuropathy Journey Stories: What's Yours?

Here is my member journey story

I was diagnosed with stomach cancer in July 2021 I received 8 rounds of FOFOX Chemotherapy at Sloan Kettering which included Oxyplatin as part of the regimen Not one word from Sloan about neuropathy

That was followed by full gastrectomy Surgery was a success as was the chemo treatment as I am still in remission today

Throughout the 8 rounds of chemo, Sloan would ask me about any numbness or tingling in my feet or hands to which I replied each time, no

About one month after the last treatment sure enough I started feeling numbness and pain in my feet and was told it was a result of the chemo

Fast forward 5 years almost and have been living with this constant pain ever since

I have tried all meds including gaba, cymbalta, Lyrica, Low Dose Naltrexone

Also tried accupuncture, Calmare Scrambler, Ketamine infusions, steroid injections, Capsascin patches, lidocaine patches, etc

Not to mention ketamine compound cream, various other creams and salves, etc

Not one of these has offered any kind of relief I am Very happy for those out there that report improvement from some of this stuff which only makes me feel like an outlier of sorts

Why hasn’t any of this helped me with this ever present suffering? Is there something I’m doing wrong or missing out on?

The things that do help are being engaged in things that I enjoy which distract me so much that say two hours later I realized that I just had two hours of relief

That includes pick up softball, weekly golfing, spending time with friends and family, But I can’t be distracted 24/7

One last thing that has helped is coming to accept that this is the new normal for me A therapist likened it to being in a tug of war that I can’t win Pain is on one side of the rope and I’m on the other and it’s time to just drop the rope and accept I will never win I can however as I said finally accept this new way of life, continue to keep an open mind about something that might help and try and live life to the fullest at 71 years of age

Oh yes and count the blessings in my life, keep a positive attitude and have gratitude that I am still here Sometimes easier said than done

@jnemeth1214, Thank you for sharing your neuropathy journey. Sorry to hear that you haven't found much that provides any relief. I know you're not alone. While my neuropathy is not from chemo, I found this site when I was searching for anything that might help the progression or the numbness and tingling I have in my feet and legs. I'm pretty much in the same boat and like you it does help to live as well as you can with the condition and stay positive.

Not sure if you are familiar with the Foundation for Peripheral Neuropathy but thought you might like to see what is on their site related to chemo induced neuropathy - https://www.foundationforpn.org/. They also have a YouTube channel where they keep all of their webinars that you might find helpful - https://www.youtube.com/@foundationforperipheralneu4122/search

Here is my member journey story

I was diagnosed with stomach cancer in July 2021 I received 8 rounds of FOFOX Chemotherapy at Sloan Kettering which included Oxyplatin as part of the regimen Not one word from Sloan about neuropathy

That was followed by full gastrectomy Surgery was a success as was the chemo treatment as I am still in remission today

Throughout the 8 rounds of chemo, Sloan would ask me about any numbness or tingling in my feet or hands to which I replied each time, no

About one month after the last treatment sure enough I started feeling numbness and pain in my feet and was told it was a result of the chemo

Fast forward 5 years almost and have been living with this constant pain ever since

I have tried all meds including gaba, cymbalta, Lyrica, Low Dose Naltrexone

Also tried accupuncture, Calmare Scrambler, Ketamine infusions, steroid injections, Capsascin patches, lidocaine patches, etc

Not to mention ketamine compound cream, various other creams and salves, etc

Not one of these has offered any kind of relief I am Very happy for those out there that report improvement from some of this stuff which only makes me feel like an outlier of sorts

Why hasn’t any of this helped me with this ever present suffering? Is there something I’m doing wrong or missing out on?

The things that do help are being engaged in things that I enjoy which distract me so much that say two hours later I realized that I just had two hours of relief

That includes pick up softball, weekly golfing, spending time with friends and family, But I can’t be distracted 24/7

One last thing that has helped is coming to accept that this is the new normal for me A therapist likened it to being in a tug of war that I can’t win Pain is on one side of the rope and I’m on the other and it’s time to just drop the rope and accept I will never win I can however as I said finally accept this new way of life, continue to keep an open mind about something that might help and try and live life to the fullest at 71 years of age

Oh yes and count the blessings in my life, keep a positive attitude and have gratitude that I am still here Sometimes easier said than done

@jnemeth1214 I felt as you did when my neuropathy started and through trial and error found that 300mg Gaba 4x/day spaced every six hours and 75mg Amitriptyline seem to work best. Mama Bear Oasis cream massaged into the painful areas feels pleasant. Like you, distraction with activities that bring pleasure has helped.

My pain specialist said that there are about five medications specifically for neuropathy will likely be approved in the next two years. The prospect of this brings me great comfort and I hope it will for you too.

For two years now i am diagnosed with peripheral neuropathy, secondary to diabetes; and to add to the excitement i have a compartment syndrome in my left hand. I do not have to describe the sleepless night caused by pain. i have tried the most awful medication invented by men, Celexa. I had to discontinue it. yes it took away the pain but it made me sleep 12 hours and i could barely walk the next day as i was dangerously unsteady on my feet and very groggy. i was tried on gabapentin which at time works well but after a day of more than 500 steps, yhe pain is uncontrolable and sleep may come around 4 or 5 a m. i tried accupuncture five times. Every night i experience less pain and on 2 occasions i had no pain at all during yhe evening and night. it was like a miracle. But the effect only lasted one day. It means I would have to have accupuncture seddions daily which is very impracticable. I just wanted to add this to tell people that there is hope. Even now in some hospitals research is done by stimulating directly fibres of the spinal cord and results are hopeful.

For two years now i am diagnosed with peripheral neuropathy, secondary to diabetes; and to add to the excitement i have a compartment syndrome in my left hand. I do not have to describe the sleepless night caused by pain. i have tried the most awful medication invented by men, Celexa. I had to discontinue it. yes it took away the pain but it made me sleep 12 hours and i could barely walk the next day as i was dangerously unsteady on my feet and very groggy. i was tried on gabapentin which at time works well but after a day of more than 500 steps, yhe pain is uncontrolable and sleep may come around 4 or 5 a m. i tried accupuncture five times. Every night i experience less pain and on 2 occasions i had no pain at all during yhe evening and night. it was like a miracle. But the effect only lasted one day. It means I would have to have accupuncture seddions daily which is very impracticable. I just wanted to add this to tell people that there is hope. Even now in some hospitals research is done by stimulating directly fibres of the spinal cord and results are hopeful.