Neuropathy getting worse years after treatment?
Hi, I am new here so I hope I am doing this correctly. I had cancer and treatment in 2013 and had taxol. I had bad neuropathy for a few years after, took gabapentin which helped reduce pain and went off the medication because I was ok. I have had the neuropathy- mostly pain-sometimes since then like once a month. The last 6 months it has been daily and awful, pain in feet and hands.
My PCP and neurologist say that the neuropathy should not be happening so far out from treatment. Back on the gabapentin just last week
I am very anxious about this and I don’t understand why this is happening now.
Any thoughts welcome
Thank you
Alice
Comments
-
Hi @addie , I’m sorry your neuropathy has flared up again. Mine is not peripheral from chemo (radiation/injury induced) but it seems to vary over time. The pain specialist who ended up treating me was not surprised by this. He said change in scar tissue, anything that causes swelling, hormonal/blood sugar changes, medications, stress and infections can all start things up again or alter the symptoms.
If the gabapentin doesn’t help (I still take it) and the neurologist has no further ideas you might want to consult a pain clinic which focuses on lessening the pain whatever the cause. In my case acupuncture helped some and a nerve block stopped the rib pain when I breathe. I was pleased that they tried the least invasive treatments first. I hope your pain disappears again.
0 -
Hi, thank you so much. I was scared something was really wrong. I never thought of a pain specialist.
Take care.
0 -
Addie,
I developed peripheral neuropathy (PN) towards end of chemo tx. In 2020. It has improved & worsened on several occasions since then. I have been taking GABA too. There are other meds to try if GABA no longer works. Lyrica is an alternative when GABA is no longer effective. If your Doc. Will not prescribe it or another med, I agree …. Pain management specialist is the Direction to go for help. I have worked in medical field for 36 years. There is still help for PN. Wishing you the best & very sorry you are experiencing this problem. I hate to hear when providers do not care enough to help, even if it’s a recommendation or referral to someone who can .
0 -
Hi Addie - so sorry to hear about your neuropathy! It’s such a horrendous side effect - so debilitating! I got extreme neuropathy in my hands after chemo and radiation. I went to every kind of doctor including pain management, PT, acupuncture, a healer, and astrologist - I was desperate! Finally I went to a hand specialist who said the cancer treatment had caused a side effect of extreme carpal tunnel in both my hands. I had never heard that was a possibility and didn’t really believe it but out of desperation, I got surgery on both hands and I am PAIN FREE! No one was more surprised than me - I never thought it would work. So I don’t know if it’s worth a shot, but maybe you could get a carpal tunnel test just to see. Sending lots of positive vibes your way. Best of luck! Juliet
0 -
Hi Ladies, haven't been on for a while but my neuropathy is bothering me so much, I wanted to check in and see if anything new has been found. I have PN from the chemo and don't have pain but numbness in my legs, feet and fingers. On top of arthritis in my knee's made worst by the anastrozole. I'm 63 and when I get up it takes a bit to walk and get moving. I walk every day and do gentle yoga to keep my body moving and nothing seems to help. Any idea's would be much appreciated.
0 -
I missed this thread when it first hit. I also had mild peripheral neuropathy on Taxol, and it got better after treatment ended. Fast forward several years, and it was back. I thought it was a late effect from treatment.
It wasn't until I went off a cholesterol drug my cardiologist had put me on a year earlier that I realized it was THAT drug that was setting it off, and stopping the new drug stopped the neuropathy. It turns out peripheral neuropathy is a known side effect of statins.
My point being that it we all are scarred physically and emotionally by treatment, and often assume our ailments are caused by that treatment. But please keep your eyes open to other possible causes, and always try and identify other factors in your life that may have changed at the time symptoms develop. Hope you all find some relief.
0 -
Hi,
Not sure if this discussion group is still active but I am curious if anyone who developed neuropathy in feet and hands following chemotherapy, not during has continually seen it progress over the years.
Mine began months after finishing chemo and at first was mild numbness in my feet and fingers. I rarely had the zingy pain just periodic pins and needles feeling.
My oncologist initially tried the two drugs but I had bad side effects so didn’t take those. And honestly I rarely had pain associated with neuropathy.
Over a few years the numbness in hands and feet increased and I have to really focus where my feet are especially on uneven surfaces as I don’t have much sensation. My numbness in my hands also increased and my handwriting got really bad. I always had beautiful script and now my signature looks like I am a doctor. 🤣🤣I am now 13 years out from my cancer and treatment and thankfully have no evidence of disease.
But. Chemo not only caused neuropathy but the drug Herceptin gave me horrific bone and joint pain. A relatively rare side effect, reported as 4% and even though I told my oncologist after ending chemo, which like many of us causes bone and joint pain it got worse and not better. I told her it must be the Herceptin and she said that’s not a side effect and has ever seen.
To her credit at an appointment a year later she came in with tears in her eyes and said I should have listened to you, I have another patient who experienced this and I found it is a rare side effect but it does happen. I asked what she would have done if she understood it was Herceptin and she said I would have immediately taken u off it instead of continuing for another six months.
Now back to neuropathy, for the past year or so I believe the neuropathy has spread to my legs and arms. It started with weakness in both arms and legs and often in my arms a feeling of numbness and pain.
The past several months my balance has gotten much worse and I have to be really careful not only walking on uneven surfaces but even on flat surfaces and I trip easily even on flat surfaces or something as small as a threshold.
My arms and legs are also getting weaker.
I did develop several autoimmune diseases following cancer treatment such as Hosimotos and progressive osteoarthritis causing further joint pain and deterioration. I have already needed a full knee replacement, hip replacement and need two shoulder surgeries.
Has anyone experienced any progressive neuropathy that advanced to weakness in arms and legs, balance issues, numbness and pain in arms etc?I know there is no cure fur neuropathy or treatment other than some options that help with neuropathic pain but wonder if other things helped imbalance, progressive weakness etc.
Thanks
Julie Elmore, Vermont
0
