I got neuropathy from chemo as well. I haven’t heard of anyone else who had the burning pain I had. It felt like my finger tips and feet bottoms were on fire constantly. I found a regiment of supplements that took away the pain. Living with the numbness that I still have is still a great improvement.
The Neuropathy in my feet started about 4 months after my treatments ended. My palliative care doctors put me on 60mg of cymbalta. I was already on 1800 mg of Gabapentin. I was told to massage my feet daily with Cocoa butter. At first I did not think any of that was working. One night I accidentally missed taking my Cymbalta. My neuropathy was much worse. I'm careful to take all my meds. I have a friend whose neurologist told her to use low dose naltrexone (1dn) for her neuropathy pain. It has to be made at a compounding pharmacy. She finds relief from that especially at bedtime.
I hope your doctors can help you. I asked to be cared for by a palliative care doctor. They deal with the side effects. The oncologists are focused on the cancer. Please check with your doctor about these treatments and getting a palliative care doctor. Praying for some relief for you. Vickie
Finished chemotherapy treatment for colon cancer on February 14,2023
Developed neuropathy in fingers and toes that has gotten worse since last
Treatment.both are numb and feels cold . My other side effect is taste,have a
great appitite,but does not enjoy food because of taste.
Hi!
I am happy to be following you all with some similar stories of neuropathy trials and tribulations!
I was diagnosed with Pancreatic Ca July of 2021. I had twelve rounds of chemo (4 drugs) including oxaliplatin and 5-FU.
I also had 15 rounds of proton radiation along with oral chemo and lastly the Whipple procedure in May 2022.
I began to experience neuropathy symptoms probably after my 8th round. Doses were reduced but the neuropathy only got worse. It got substantially worse after my surgery, slightly better over last summer but increased in intensity after an emergency appendectomy in Dec of 22.
I have numbness, pins needles and stiffness in my feet and ankles, sometimes into my calves to the knee. Also I’m my fingers. I have tried gabapentin which really didn’t work and am now on Cymbalta which is not working. I was told that if after a year if you don’t see improvement it probably will never go away. Does anyone have experience with CIPN if so have you seen improvement after so much time? Thank you for anything that you can share.
Finished chemotherapy treatment for colon cancer on February 14,2023
Developed neuropathy in fingers and toes that has gotten worse since last
Treatment.both are numb and feels cold . My other side effect is taste,have a
great appitite,but does not enjoy food because of taste.
Another cause of neuropathy is the autoimmune disease of multiple sclerosis (MS) which I note is missing in your listing of causes of neuropathy. I am a 3+ year survivor of Stage IV ESCC. I am also a 30+ year survivor of relapsing/remitting MS. I was treated with a agressive radiotherapy regimen and FOLFOX chemotherapy. The oxyplatin exacerbated my MS neuropathy and I was changed to a FOLFIRI regimen. I take baclofen to manage muscle stiffness/rigidity, gabapentin for pain and valium for vertigo. If the pain becomes particularly bothersome, I take 5mg b.i.d. I find walking, stationary biking and stretching to be helpful as well. I also take a high quality fish oil supplement and Vita B12 daily. You should also speak with your primary care provider for further assistance with treatments for your neuropathy issues. While I am a bit of a skeptic, some fellow patients at my treatment center have told me that chiropractic therapy has also been helpful.
I received a notification from the Foundation fir Peripheral Neuropathy concerning a study that requires patients with diagnosed Chemotherapy induced PN. For anyone interested, the link is https://collinge.org/cipn-study/
I have Ovarian Cancer, in remission.
Taxol and Carboplatin are the usual treatment.
As soon as you get any symptoms of neuropathy, the dr will usually decrease the dosage.
I have Ovarian Cancer, in remission.
Taxol and Carboplatin are the usual treatment.
As soon as you get any symptoms of neuropathy, the dr will usually decrease the dosage.
I have had CIPN since near the end of chemo treatment last July. I was wearing braces for drop foot and using a walker. I now use a cane when going out and can get around the house without one.
I have tried acupuncture but did nothing for me. I am on Duloxetine and Gabapenten for pain management which is working for the most part.
I recently started a mega vitamin called Neurovite. It’s on Amazon, kind of expensive.
I have seen steady improvement since the beginning of my neuropathy. My balance is much better.
It’s a wait and see, try everything you can and try to stay positive. Good luck.
Hello @bendeb, I would like to add my welcome to Connect along with @colleenyoung and others. You may also be interested in reading what others have shared helps them with their neuropathy symptoms in the following discussion:
Connect
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I got neuropathy from chemo as well. I haven’t heard of anyone else who had the burning pain I had. It felt like my finger tips and feet bottoms were on fire constantly. I found a regiment of supplements that took away the pain. Living with the numbness that I still have is still a great improvement.
The Neuropathy in my feet started about 4 months after my treatments ended. My palliative care doctors put me on 60mg of cymbalta. I was already on 1800 mg of Gabapentin. I was told to massage my feet daily with Cocoa butter. At first I did not think any of that was working. One night I accidentally missed taking my Cymbalta. My neuropathy was much worse. I'm careful to take all my meds. I have a friend whose neurologist told her to use low dose naltrexone (1dn) for her neuropathy pain. It has to be made at a compounding pharmacy. She finds relief from that especially at bedtime.
I hope your doctors can help you. I asked to be cared for by a palliative care doctor. They deal with the side effects. The oncologists are focused on the cancer. Please check with your doctor about these treatments and getting a palliative care doctor. Praying for some relief for you. Vickie
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2 ReactionsHere is my chemo story
https://connect.mayoclinic.org/comment/645606/
Let me know what you think
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1 ReactionHi!
I am happy to be following you all with some similar stories of neuropathy trials and tribulations!
I was diagnosed with Pancreatic Ca July of 2021. I had twelve rounds of chemo (4 drugs) including oxaliplatin and 5-FU.
I also had 15 rounds of proton radiation along with oral chemo and lastly the Whipple procedure in May 2022.
I began to experience neuropathy symptoms probably after my 8th round. Doses were reduced but the neuropathy only got worse. It got substantially worse after my surgery, slightly better over last summer but increased in intensity after an emergency appendectomy in Dec of 22.
I have numbness, pins needles and stiffness in my feet and ankles, sometimes into my calves to the knee. Also I’m my fingers. I have tried gabapentin which really didn’t work and am now on Cymbalta which is not working. I was told that if after a year if you don’t see improvement it probably will never go away. Does anyone have experience with CIPN if so have you seen improvement after so much time? Thank you for anything that you can share.
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Like -
Helpful -
Hug
1 ReactionFinished chemotherapy treatment for colon cancer on February 14,2023
Developed neuropathy in fingers and toes that has gotten worse since last
Treatment.both are numb and feels cold . My other side effect is taste,have a
great appitite,but does not enjoy food because of taste.
-
Like -
Helpful -
Hug
1 ReactionAnother cause of neuropathy is the autoimmune disease of multiple sclerosis (MS) which I note is missing in your listing of causes of neuropathy. I am a 3+ year survivor of Stage IV ESCC. I am also a 30+ year survivor of relapsing/remitting MS. I was treated with a agressive radiotherapy regimen and FOLFOX chemotherapy. The oxyplatin exacerbated my MS neuropathy and I was changed to a FOLFIRI regimen. I take baclofen to manage muscle stiffness/rigidity, gabapentin for pain and valium for vertigo. If the pain becomes particularly bothersome, I take 5mg b.i.d. I find walking, stationary biking and stretching to be helpful as well. I also take a high quality fish oil supplement and Vita B12 daily. You should also speak with your primary care provider for further assistance with treatments for your neuropathy issues. While I am a bit of a skeptic, some fellow patients at my treatment center have told me that chiropractic therapy has also been helpful.
-
Like -
Helpful -
Hug
1 ReactionI received a notification from the Foundation fir Peripheral Neuropathy concerning a study that requires patients with diagnosed Chemotherapy induced PN. For anyone interested, the link is https://collinge.org/cipn-study/
-
Like -
Helpful -
Hug
3 ReactionsBendeb, I hope you'll also join the discussions in the Gynecologic Cancers group here: https://connect.mayoclinic.org/group/gynecologic-cancer/
It sounds like you have experience that other women new to ovarian cancer would benefit from.
I have Ovarian Cancer, in remission.
Taxol and Carboplatin are the usual treatment.
As soon as you get any symptoms of neuropathy, the dr will usually decrease the dosage.
Hello @bendeb, I would like to add my welcome to Connect along with @colleenyoung and others. You may also be interested in reading what others have shared helps them with their neuropathy symptoms in the following discussion:
Member Neuropathy Journey Stories: What's Yours? — https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/