I had the original formulation of Folfirinox that was 20% higher concentration than (m)Folfirinox in use since 2018. I had 24 cycles in groups of six with alternating groups of just 5-FU/Leucovorin to lessen the cumulative effects of neuropathy from oxaliplatin. That alternate dosing helped in the peripheral neuropathy from becoming severe and permanent. It resolved but took several years.
Anything that helped with the neuropathy? I have read that it may get worse before improving. It is worse since I stopped 2 1/2 months ago. Anything that helped? Pain is not an issue, just loss of function.
Antioxidants (high levels of Vitamin E, Vitamin C, coenzyme Q, tumeric, and many others) have the potential of reducing the efficacy of cisplatin. In addition, many of these components can add to any bleeding risk, and should be held if your platelets are low (good possibility for anyone on gemcitabine, cisplatin and Abraxane).
Quercitin inhibits the activity of enzymes that help break down Abraxane to eliminate it from the body, and could lead to a buildup of the drug (and higher side effects) in your body.
I've also learned that high levels of vitamin B7 (biotin) can cause artificially low CA19-9 readings, depending on the test used.
So, it's definitely worth consulting your oncologist(s) and their pharmacist(s) about any supplements you're considering with the specific chemo you're receiving.
I stopped almost all my supplements a few months ago on my new chemo, and it's a fine line: The chemo seems to be working well (CA19-9 down from 677 to 55), but the neuropathy is adding up quickly. I'm exploring a combination of some quack remedies, and will post if anything good comes of it. 🙂
Antioxidants (high levels of Vitamin E, Vitamin C, coenzyme Q, tumeric, and many others) have the potential of reducing the efficacy of cisplatin. In addition, many of these components can add to any bleeding risk, and should be held if your platelets are low (good possibility for anyone on gemcitabine, cisplatin and Abraxane).
Quercitin inhibits the activity of enzymes that help break down Abraxane to eliminate it from the body, and could lead to a buildup of the drug (and higher side effects) in your body.
I've also learned that high levels of vitamin B7 (biotin) can cause artificially low CA19-9 readings, depending on the test used.
So, it's definitely worth consulting your oncologist(s) and their pharmacist(s) about any supplements you're considering with the specific chemo you're receiving.
I stopped almost all my supplements a few months ago on my new chemo, and it's a fine line: The chemo seems to be working well (CA19-9 down from 677 to 55), but the neuropathy is adding up quickly. I'm exploring a combination of some quack remedies, and will post if anything good comes of it. 🙂
Thank you! I hope you will fix your neuropathy. Turmeric and company are also stomach irritants.
Good luck with your exploring some quack remedies))
Please post, yes!
I had the original formulation of Folfirinox that was 20% higher concentration than (m)Folfirinox in use since 2018. I had 24 cycles in groups of six with alternating groups of just 5-FU/Leucovorin to lessen the cumulative effects of neuropathy from oxaliplatin. That alternate dosing helped in the peripheral neuropathy from becoming severe and permanent. It resolved but took several years.
Is there a way to protect your hands and feet from neuropathy during the actual chemo - when you get Folfirinox at the hospital and the next 46 hours? Compressing socks, gloves, ice?
I haven't yet tried any of my quack remedies (transdermal creams and foot baths with Vitamin-B and other "neuroprotective" supplements) at home, but there seems to be general agreement (including my oncologist) that icing during chemo may help; in particular, cold/ice on the hands and feet while the known offenders (Abraxane, Cisplatin, Oxaliplatin) are being infused.
Cold-therapy caps are also used on the scalp during chemo to reduce hair loss. In both cases, the theory is that cold will compress blood vessels and reduce the amount of chemo/toxicity in extremities.
I have also read that compression gloves/socks (either alone or in conjunction with ice) may be helpful, but I did not save the main article/paper I read, and don't recall if it even had quantitative results or just qualitative/perception results.
I have tried both, alone and in combination, on my feet: 50 mm Hg compression socks, and ice packs. Also some orthopedic boots with a compression squeeze bulb and freezable gel inside... for up to 90 minutes at a time. I can say the ice gets quite uncomfortable over that period of time, and would never be an option for me to apply during 46 hours of 5FU at home. I don't recall if 5FU causes as much neuropathy as the other ingredients in Folfirinox, so that may not matter.
In my case, I have not used either in a disciplined manner, due to the inconvenience and discomfort. I have not noticed any reduction in neuropathy. The chemo-induced neuropathy is cumulative, and I have no way to tell if there is "less increase" with occasional icing/compression than there would be without. But since my chemo regimen seems to be working, I will be continuing on it for the foreseeable future, and will be revisiting the icing/compression options in a more serious manner soon.
I hope others will chime in. There is also a neuropathy support group on Mayo Connect. I have not yet searched there, but it might contain more useful posts, given the number of people suffering CIPN (Chemotherapy-Induced Peripheral Neuropathy) from their treatment of other cancers besides pancreatic.
Is there a way to protect your hands and feet from neuropathy during the actual chemo - when you get Folfirinox at the hospital and the next 46 hours? Compressing socks, gloves, ice?
My oncologist says a definite NO to the cold socks & gloves. I bought some and now am trying to sell them. I too was concerned about neuropathy. Your oncologist should be willing to reduce the dosage of Oxaliplatin if you begin experiencing neuropathy. Mine reduced my dose by 20% and I have had no lingering neuropathy. I still have tingling up to 4 days after my infusion but you will be susceptible to cold. That is a known side effect of this drug.
I use Boiron Kali Phosphoricum homeopathic pellets for my tingling that you dissolve under your tongue (available on an Amazon of any health food store). It really works & quickly!!!
You should also be taking Vit B Complex daily as this is known to prevent neuropathy. These are what are working for me personally.
My oncologist says a definite NO to the cold socks & gloves. I bought some and now am trying to sell them. I too was concerned about neuropathy. Your oncologist should be willing to reduce the dosage of Oxaliplatin if you begin experiencing neuropathy. Mine reduced my dose by 20% and I have had no lingering neuropathy. I still have tingling up to 4 days after my infusion but you will be susceptible to cold. That is a known side effect of this drug.
I use Boiron Kali Phosphoricum homeopathic pellets for my tingling that you dissolve under your tongue (available on an Amazon of any health food store). It really works & quickly!!!
You should also be taking Vit B Complex daily as this is known to prevent neuropathy. These are what are working for me personally.
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Multi-vitamin, and extra Zinc, B-6, B-12, Mg and D-3.
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1 ReactionAnything that helped with the neuropathy? I have read that it may get worse before improving. It is worse since I stopped 2 1/2 months ago. Anything that helped? Pain is not an issue, just loss of function.
I took a multivitamin plus additional Zinc, Magnesium, B-6, B-12 and D-3 recommended by the N.P.
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3 ReactionsThank you!
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1 Reaction@masha123 , My neurologist just informed me last week that too much B6 or B12 can also cause neuropathy, and sure enough, Dr. Google confirms it:
https://www.tga.gov.au/news/safety-alerts/health-supplements-containing-vitamin-b6-can-cause-peripheral-neuropathy
https://www.ncbi.nlm.nih.gov/books/NBK554500/
https://www.houstonchronicle.com/lifestyle/renew-houston/health/article/Massive-doses-of-vitamin-B12-can-be-bad-for-you-17302851.php
Antioxidants (high levels of Vitamin E, Vitamin C, coenzyme Q, tumeric, and many others) have the potential of reducing the efficacy of cisplatin. In addition, many of these components can add to any bleeding risk, and should be held if your platelets are low (good possibility for anyone on gemcitabine, cisplatin and Abraxane).
Quercitin inhibits the activity of enzymes that help break down Abraxane to eliminate it from the body, and could lead to a buildup of the drug (and higher side effects) in your body.
I've also learned that high levels of vitamin B7 (biotin) can cause artificially low CA19-9 readings, depending on the test used.
So, it's definitely worth consulting your oncologist(s) and their pharmacist(s) about any supplements you're considering with the specific chemo you're receiving.
I stopped almost all my supplements a few months ago on my new chemo, and it's a fine line: The chemo seems to be working well (CA19-9 down from 677 to 55), but the neuropathy is adding up quickly. I'm exploring a combination of some quack remedies, and will post if anything good comes of it. 🙂
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Like -
Helpful -
Hug
3 ReactionsThank you! I hope you will fix your neuropathy. Turmeric and company are also stomach irritants.
Good luck with your exploring some quack remedies))
Please post, yes!
Is there a way to protect your hands and feet from neuropathy during the actual chemo - when you get Folfirinox at the hospital and the next 46 hours? Compressing socks, gloves, ice?
I haven't yet tried any of my quack remedies (transdermal creams and foot baths with Vitamin-B and other "neuroprotective" supplements) at home, but there seems to be general agreement (including my oncologist) that icing during chemo may help; in particular, cold/ice on the hands and feet while the known offenders (Abraxane, Cisplatin, Oxaliplatin) are being infused.
Cold-therapy caps are also used on the scalp during chemo to reduce hair loss. In both cases, the theory is that cold will compress blood vessels and reduce the amount of chemo/toxicity in extremities.
I have also read that compression gloves/socks (either alone or in conjunction with ice) may be helpful, but I did not save the main article/paper I read, and don't recall if it even had quantitative results or just qualitative/perception results.
I have tried both, alone and in combination, on my feet: 50 mm Hg compression socks, and ice packs. Also some orthopedic boots with a compression squeeze bulb and freezable gel inside... for up to 90 minutes at a time. I can say the ice gets quite uncomfortable over that period of time, and would never be an option for me to apply during 46 hours of 5FU at home. I don't recall if 5FU causes as much neuropathy as the other ingredients in Folfirinox, so that may not matter.
In my case, I have not used either in a disciplined manner, due to the inconvenience and discomfort. I have not noticed any reduction in neuropathy. The chemo-induced neuropathy is cumulative, and I have no way to tell if there is "less increase" with occasional icing/compression than there would be without. But since my chemo regimen seems to be working, I will be continuing on it for the foreseeable future, and will be revisiting the icing/compression options in a more serious manner soon.
I hope others will chime in. There is also a neuropathy support group on Mayo Connect. I have not yet searched there, but it might contain more useful posts, given the number of people suffering CIPN (Chemotherapy-Induced Peripheral Neuropathy) from their treatment of other cancers besides pancreatic.
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Helpful -
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1 ReactionMy oncologist says a definite NO to the cold socks & gloves. I bought some and now am trying to sell them. I too was concerned about neuropathy. Your oncologist should be willing to reduce the dosage of Oxaliplatin if you begin experiencing neuropathy. Mine reduced my dose by 20% and I have had no lingering neuropathy. I still have tingling up to 4 days after my infusion but you will be susceptible to cold. That is a known side effect of this drug.
I use Boiron Kali Phosphoricum homeopathic pellets for my tingling that you dissolve under your tongue (available on an Amazon of any health food store). It really works & quickly!!!
You should also be taking Vit B Complex daily as this is known to prevent neuropathy. These are what are working for me personally.
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Helpful -
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1 ReactionThank you very much!