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.
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
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.
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.
Jldavis23 I’m looking for most recent posts, is this 1923 post? I have what my oncologists refer to as chemo-induced neuropathy and from what I understand this is different from other neuropathy that some get. Mine started when I started chemo for breast cancer, doctors kept telling me it would go away after treatment t was done. All treatment including surgery and radiation was finished in 11/22. Am not on anymore treatment because neuropathy got worse. I still have symptoms, numbness and tingling in feet and fingers. It was improving but numbness in left foot has gotten worse. Also have strength and balance issues, using a cane. Taking Gabapentin 300mg twice a day. Oncologists said to keep taking it. Can’t understand why there is no treatment for this, doctors keep saying there is nothing that can be done. I feel that is not good enough, cancer has been happening for decades and this is doctors answer? Hope you find something to help you.
Jldavis23 I’m looking for most recent posts, is this 1923 post? I have what my oncologists refer to as chemo-induced neuropathy and from what I understand this is different from other neuropathy that some get. Mine started when I started chemo for breast cancer, doctors kept telling me it would go away after treatment t was done. All treatment including surgery and radiation was finished in 11/22. Am not on anymore treatment because neuropathy got worse. I still have symptoms, numbness and tingling in feet and fingers. It was improving but numbness in left foot has gotten worse. Also have strength and balance issues, using a cane. Taking Gabapentin 300mg twice a day. Oncologists said to keep taking it. Can’t understand why there is no treatment for this, doctors keep saying there is nothing that can be done. I feel that is not good enough, cancer has been happening for decades and this is doctors answer? Hope you find something to help you.
Jldavis23 I’m looking for most recent posts, is this 1923 post? I have what my oncologists refer to as chemo-induced neuropathy and from what I understand this is different from other neuropathy that some get. Mine started when I started chemo for breast cancer, doctors kept telling me it would go away after treatment t was done. All treatment including surgery and radiation was finished in 11/22. Am not on anymore treatment because neuropathy got worse. I still have symptoms, numbness and tingling in feet and fingers. It was improving but numbness in left foot has gotten worse. Also have strength and balance issues, using a cane. Taking Gabapentin 300mg twice a day. Oncologists said to keep taking it. Can’t understand why there is no treatment for this, doctors keep saying there is nothing that can be done. I feel that is not good enough, cancer has been happening for decades and this is doctors answer? Hope you find something to help you.
I also have chemo induced neuropathy. I work with my pain doctor on this. Right now I’m on 600 mg gabapentin 4 times a day. It’s the only thing they can do because the Chemo word out the nerve endings so there’s no “fixing” the problem just treating.
I also have chemo induced neuropathy. I work with my pain doctor on this. Right now I’m on 600 mg gabapentin 4 times a day. It’s the only thing they can do because the Chemo word out the nerve endings so there’s no “fixing” the problem just treating.
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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.
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Helpful -
Hug
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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1 ReactionHere is my chemo story
https://connect.mayoclinic.org/comment/645606/Let me know what you think
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1 ReactionThe 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 ReactionsI 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.
Jldavis23 I’m looking for most recent posts, is this 1923 post? I have what my oncologists refer to as chemo-induced neuropathy and from what I understand this is different from other neuropathy that some get. Mine started when I started chemo for breast cancer, doctors kept telling me it would go away after treatment t was done. All treatment including surgery and radiation was finished in 11/22. Am not on anymore treatment because neuropathy got worse. I still have symptoms, numbness and tingling in feet and fingers. It was improving but numbness in left foot has gotten worse. Also have strength and balance issues, using a cane. Taking Gabapentin 300mg twice a day. Oncologists said to keep taking it. Can’t understand why there is no treatment for this, doctors keep saying there is nothing that can be done. I feel that is not good enough, cancer has been happening for decades and this is doctors answer? Hope you find something to help you.
Yes, this is from a few weeks ago.
I also have chemo induced neuropathy. I work with my pain doctor on this. Right now I’m on 600 mg gabapentin 4 times a day. It’s the only thing they can do because the Chemo word out the nerve endings so there’s no “fixing” the problem just treating.
Welcome @jimmy252, I'm sorry to hear you have neuropathy caused by your chemo treatments. The Foundation for Peripheral Neuropathy is a good resource for alternative treatment/therapies and learning more about chemo induced neuropathy. Here are a few:
--- Webinar: Chemo-Induced Peripheral Neuropathy: https://www.foundationforpn.org/webinar-chemo-induced-peripheral-neuropathy/
--- Living Well: https://www.foundationforpn.org/living-well/
Have you looked into any alternative or complementary treatments for your neuropathy?
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1 ReactionI admit to myself,there is no real help.
Bless you