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Neuropathy in feet after completing Chemotherapy

Posted by kjc12 @kjc12, Jan 3, 2024

My husband completed 10 rounds of Folfirinox at the end of September. In late October he developed neuropathy in both feet. It is getting progressively worse. We are meeting our Oncologist next week to go over bloodwork and CT-scan scheduled for this Friday. Has anyone else had this happen afterwards and if so, what supplements, treatments have helped. Thanks for all your help once again.

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gardenlady1116 | @gardenlady1116 | Feb 4, 2024
In reply to @cancerback "I also had this happen. I completed 6 infusions of Tivdak and in the three weeks..." + (show)
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I also had this happen. I completed 6 infusions of Tivdak and in the three weeks following, my neuropathy got much worse. In the 10 months since then, it has not improved. I went to a physical therapist to learn exercises to help my balance and the numb feeling in my feet. I am going to restart the Tivdak soon and I am very worried about how much worse it will get.

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My neuropathy also got worse after stopping, I think at about 3-4 months seemed to level off, but not better. Physical therapy for balance exercise has been helpful. Make sure you tell your doctor how you are doing.

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henfayp | @henfayp | Feb 5, 2024

Anyone tried EMS food massager? Does it work?

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kjc12 | @kjc12 | Feb 6, 2024

I purchased the Miko heated foot massager for my husband from our local Walmart. He feels it has helped his neuropathy greatly. Uses it a couple times a day. Things have greatly improved. I hope you find relief soon.

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kjc12 | @kjc12 | Feb 6, 2024
In reply to @cancerback "I also had this happen. I completed 6 infusions of Tivdak and in the three weeks..." + (show)
Profile picture for cancerback @cancerback

I also had this happen. I completed 6 infusions of Tivdak and in the three weeks following, my neuropathy got much worse. In the 10 months since then, it has not improved. I went to a physical therapist to learn exercises to help my balance and the numb feeling in my feet. I am going to restart the Tivdak soon and I am very worried about how much worse it will get.

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My husband has been using the Milo’s foot massager and it has really helped. He has also started Acupuncture and it seems to be helping his neuropathy as well as stomach issues from Whipple surgery and chemo. He’ll go for his 3rd visit this week. Will post updates. Wishing you well in this long journey.

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stangreen | @stangreen | Aug 18 1:28pm
In reply to @markymarkfl "Folfirinox seems to get almost everyone with the chemo-induced peripheral neuropathy (CIPN). It can get worse..." + (show)
Profile picture for markymarkfl @markymarkfl

Folfirinox seems to get almost everyone with the chemo-induced peripheral neuropathy (CIPN).

It can get worse for a while after stopping chemo -- a phenomenon called "coasting."

After 12 rounds of Folfirinox, it took about 7 months for mine to fully resolve. My neuropathy was only tingling and decreased sensation (Grade 2) -- never painful or grade 3+. (Worse now after 25 rounds of Abraxane & Cisplatin, but still grade 2).

Vitamins B6 and B12 are said to help with the lower grades, but can actually make neuropathy worse if taken in large quantities. Foot massage, foot baths, and other comforting stimulus may also provide some relief, but time seems to be the key.

If the neuropathy is painful, there are pharmaceutical options that can mask it and reduce the sensitivity, but are not necessarily curative.

You can get a cream with ketamine + amytryptaline+ lidocane, or pills like Cymbalta, Lyrica, gabapentin, mirogabalin, etc -- probably from a neurologist or palliative oncologist -- if necessary.

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Its sheer hell. You describe it well. After 12 rounds of folfirinox the neuropathy got progressively worse . Nothing helps.

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56pan | @56pan | Aug 19 9:32am
In reply to @stangreen "Its sheer hell. You describe it well. After 12 rounds of folfirinox the neuropathy got progressively..." + (show)
Profile picture for stangreen @stangreen

Its sheer hell. You describe it well. After 12 rounds of folfirinox the neuropathy got progressively worse . Nothing helps.

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Agreed. If anyone on this forum knows of something that_actually_worked for them, please pass it on. It's become a serious quality of life issue for me.

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stangreen | @stangreen | Aug 19 1:26pm
In reply to @56pan "Agreed. If anyone on this forum knows of something that_actually_worked for them, please pass it on...." + (show)
Profile picture for 56pan @56pan

Agreed. If anyone on this forum knows of something that_actually_worked for them, please pass it on. It's become a serious quality of life issue for me.

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Nothing helps. Lyrica did nothing , Vitamin b nothing. Its all terribly depressing. Falling over and dropping things . Horrible

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56pan | @56pan | Aug 19 3:51pm
In reply to @stangreen "Nothing helps. Lyrica did nothing , Vitamin b nothing. Its all terribly depressing. Falling over and..." + (show)
Profile picture for stangreen @stangreen

Nothing helps. Lyrica did nothing , Vitamin b nothing. Its all terribly depressing. Falling over and dropping things . Horrible

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My wife is a retired nurse and wanted me to try something she found on the internet: Kymazol cream for neuropathy. Nothing, money wasted.

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rstokunaga | @rstokunaga | Aug 20 12:11pm

On first line, my wife went thru 9 rounds of folfirinox. Then 3 rounds minus Oxoli. She couldn’t take the building up of neuropathy.
I bought her a big hand held massager for her back that can be use for your feet. She didn’t like it. I did.-) I bought her a massager for her hands. It’s really for carpal tunnel but I was trying anything and everything. She didn’t like it. My granddaughter did.-)
What seemed to work was acupressure. Father and daughter both work on her at the same time. One on each foot. Then switched. Then same with the hands. I knew it was working because of the sounds of pain (good) from the new pressures being applied to pressure points. The good feeling last only a short time. But gradually got longer with each session. We went every other week. On her off treatment weeks.
Keep trying! Anything !
We went to 5 or 6 dispensaries to try and find help with neuropathy and to try and find the munchies. She started this 2.5 year journey at 95 lbs. Journey ended Mothers Day this year.

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stangreen | @stangreen | Aug 21 12:45pm

I completed 13 rounds of folfirinox about 8 weeks ago. The neuropathy is much much much worse a d no solution in sight. It is hell .

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