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.
See a neurologist. I have had chemo-induced peripheral neuropathy for years. It has become worse over the years to the point I had it pretty much in my whole body. I went to a neurologist who did an EMG and Skin Biopsies. I was diagnosed with small fiber neuropathy. There is no cure. I take Cymbalta which helps with the worst of it. Also check out these websites - Winsantor.com; https://www.foundationforpn.org/; an https://pnhelp.org/.
Lots of information and support groups where you can learn about PN in general. Winsantor focuses on Chemo-induced Peripheral Neuropathy.
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This is my Neuropathy Odyssey:
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1 ReactionSee a neurologist. I have had chemo-induced peripheral neuropathy for years. It has become worse over the years to the point I had it pretty much in my whole body. I went to a neurologist who did an EMG and Skin Biopsies. I was diagnosed with small fiber neuropathy. There is no cure. I take Cymbalta which helps with the worst of it. Also check out these websites - Winsantor.com; https://www.foundationforpn.org/; an https://pnhelp.org/.
Lots of information and support groups where you can learn about PN in general. Winsantor focuses on Chemo-induced Peripheral Neuropathy.
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Hug
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