Vitamin C infusion to help with neuropathy

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Sunnycd
Posts: 88
Joined: Fri Feb 26, 2021 10:36 am

Vitamin C infusion to help with neuropathy

Postby Sunnycd » Fri Apr 23, 2021 8:51 pm

I read posts here stating that Vitamin C infusions is helpful for many things and particularly for neuropathy. I just finished my second round of CAPOX, and I am on a chemo break for 1 week. My hands and feet are very tender, and I have tried to moisturize often, wear gloves and socks, etc. I heard that the 3rd round is the toughest, so I am preparing myself for that one, but I cannot even fathom how much worse my hands and feet might get. I spoke to my oncologist about the vitamin C infusions and she said there isn’t any scientific evidence, etc, so I think I am on my own on this one. Where do I get these infusions? Seems to me it is administered in overpriced spas, for about $300 plus a session and recommended every 3 weeks or so? Besides the obvious “putting cream on hands and feet”, any other ideas? I was told to exercise and walk a lot during chemo, but now I am told to sit and not put pressure on my feet. Reminds me of the time I read all there was to read about what to eat to combat colon cancer (nuts! Veggies! Beans! Fiber!) only to find out the hard way that those were the things NOT to eat when you have a stoma.
DX Feb. ‘21 CC IIB @ 51
Jan. ‘21 ER surgery, temp. colostomy
Sigmoid, adernocarcinoma
T4aN0MX, G2
0/24 lymph nodes
LVI: indefinite
PNI: not identified
Margins: clear
March ‘21 started 4 rounds of CAPOX
06/17/21 last day of CAPOX
06/25/21 CT scan clear
CEA: @ dx 4, post surgery 1.9, post chemo: 2.9; 09/21: 1.5
07/14/21 colostomy reversal
09/24/21 CT clear
10/12/21 colonoscopy; 1 polyp
12/05/23 colonoscopy clear
MSS, RAS/RAF wild, PIK3CA mutant

jts
Posts: 58
Joined: Sat Aug 24, 2019 3:07 pm

Re: Vitamin C infusion to help with neuropathy

Postby jts » Sun Apr 25, 2021 6:11 am

I'm not into the IV Vitamin C thing, so I don't have any advice about how to get the infusions. But the problem you're describing sounds more like the "hand-foot" syndrome that you get with 5FU chemotherapy, not neuropathy. The inflammation in your hands and feet generally gets worse right after an infusion and then gets better between infusions. After chemo is done it should go away with no permanent effects.

For exercise during those times I rode my bike. Not a lot, but 10 km, or 40-60 mins per day was a reasonable effort during chemo. Not just because it was advised either. Getting out to ride around in the fresh air and sunshine was basically the highlight of my day at the time.

Other things I had to avoid were washing my hands or washing dishes with hot water or harsh soaps, or doing stuff that required gripping hard, like opening jars, or using a screwdriver. In my experience, avoiding those sorts of things only made the problem less bad. It still sucks.
Male 42 — stage IV RC
NRAS mutant - KRAS, BRAF wt
08/2019 DX 6 cm long tumor
09-10/2019 Chemo-radiation
12/2019 TME Surgery, clear margins, 7/16 nodes positive
Pathology: ypT3 ypN2b M0
01-06/2020 - FOLFOX
CEA only goes up during chemo: 2.4 --> 6.2
07/2020 6 mm tumor in lung, was growing fast during chemo
09/2020 VATS
01/2021 new 5mm cyst in liver, CEA continues to increase --> 8
06/2021 CEA down to 6. Cyst not visible anymore.
05/2023 CEA fluctuates between 4 and 6. Scans have been clear.

zephyr
Posts: 363
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Re: Vitamin C infusion to help with neuropathy

Postby zephyr » Sun Apr 25, 2021 10:13 am

What you're describing sounds more like hand foot syndrome (HFS) than neuropathy although you may have some neuropathy that's making the HFS worse. I receive Vitamin C infusions weekly and I'm not aware of it helping as much with HFS.

In addition to the things you're already doing and what jts mentioned, you might consider eliminating or limiting commercially prepared breads and cereals. There's a documented connection between folic acid and the severity of side effects on capecitabine (I can't find the studies at the moment - they're somewhere in the posts here - my primary oncologist confirmed it with the oncology pharmacist when I asked). They will tell you that folates are in almost all foods so forget about it: the first part's true but it's not the naturally occurring folates that are the issue, it's the foods that are fortified or supplemented with the synthetic folic acid that are suspect. In North America, folic acid is added to all wheat flours (except organic wheat flours) to protect against birth defects. Unless you're pregnant, you probably don't need the extra doses. Folic acid is not added to foods in Europe, and Europeans seem to do much better on capecitabine than Americans. I found my HFS improved as I became more strict about organic breads and cereals.

Ask your oncologist if 100-200mg of B6 daily, in divided doses, might help.

Another idea is henna but you may need to wait until you get HFS under control and don't have any open sores/cuts/breaks. You don't want to put henna on an open wound because it could cause infection. If you Google "henna for hand foot syndrome" you'll find several PubMed articles, blog posts, and message board discussions. I did it once and there was a noticeable improvement but if your case is more severe it may take more than one application. The Jamila brand (found on Amazon, among other places) is one I've seen recommended, and what I used. If you try another one, make sure it's 100% natural without goofy additives.

Your oncologist can give you prescription creams that will help but if you use them for more than maybe a week or so at a time, I think they can cause more problems than they solve. Ask about continued use before you try it.

I was never on CAPOX (only CAP) and I don't know your schedule so this may not work but ... one last idea is that you might ask if it makes any sense for your circumstances to switch to a 7:7 schedule: one week on, one week off. I remember seeing some posts here a couple of years ago about how taking capecitabine for more than 7-8 days at a stretch increases the toxicity but not efficacy. It may not be advised for your circumstances but I think it might be worth a discussion...?

Edited to add: I get my Vitamin C from a naturopathic doctor. If you can find one certified in oncology (look for FABNO next to their name), all the better. A good ND or integrative medicine doc will have a lot of tools to help you control/tolerate side effects.
Last edited by zephyr on Sun Apr 25, 2021 2:35 pm, edited 1 time in total.
Nov-2009 Early stage CRC, routine colonoscopy
2010-2014 F/U colonoscopies, all clear
Jun-2016 CRC during F/U colonoscopy, surgery, Stage 4, KRAS, MSS
Aug-2016-May-2018 Folfox, 5FU, Folfiri & Avastin
Aug/Sep-2018 YAG laser surgeries (Germany), 11 nodules removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr-2019 Dec-2020 Xeloda/Avastin, SBRT, cont. Xeloda/Avastin
Mar-2021 Forfiri/Avastin
Mar-2022 Ablation & Thoracotomy
Feb-2023 Folfiri & Avastin
Nov-2023 Xeloda & Avastin

User avatar
Green Tea
Posts: 451
Joined: Mon Oct 24, 2016 10:48 am

Re: Vitamin C infusion to help with neuropathy

Postby Green Tea » Sun Apr 25, 2021 11:31 am

zephyr wrote:...There's a documented connection between folic acid and the severity of side effects on capecitabine (I can't find the studies at the moment - they're somewhere in the posts here...)

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=61499&p=486437#p486437

Rock_Robster
Posts: 1027
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Vitamin C infusion to help with neuropathy

Postby Rock_Robster » Mon Apr 26, 2021 7:01 am

Green Tea wrote:
zephyr wrote:...There's a documented connection between folic acid and the severity of side effects on capecitabine (I can't find the studies at the moment - they're somewhere in the posts here...)

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=61499&p=486437#p486437

I believe buying gluten free products is another trick to avoid the added folic acid, as it’s added to the wheat flour (which of course is absent in a GF diet). I used GF breads and pastas during chemo for this reason.
41M Australia
2018 Dx RC
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA 14>2>32>16>19>30>140>70
11/18 FOLFOX
3/19 Liver resection
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resection
NED 2 years
11/21 Liver met, PALN, lung nodules
3/22 PVE, lymphadenectomy, liver SBRT
10/22 PALN SBRT
11/22 Liver mets, peri nodule. Xeloda+Bev
4/23 XELIRI+Bev
9/23 ATRIUM trial
12/23 Modified FOLFIRI+Bev
3/24 VAXINIA (CF33 + hNIS) trial

catstaff
Posts: 177
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Re: Vitamin C infusion to help with neuropathy

Postby catstaff » Mon Apr 26, 2021 8:18 am

Great, now I have to start baking again. The King Arthur brand flour I have, even when not organic, does not seem to contain added folic acid. Our problem with home-baked goods is they get moldy faster than we can usually eat them.
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20-11/20:1.6, 4.3, 3.4, 2.7, 2/21:9.0 3/21:18,40 4/21:28,19, 5/21:13.3,8.6
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-

Rock_Robster
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Location: Brisbane, Australia

Re: Vitamin C infusion to help with neuropathy

Postby Rock_Robster » Tue Apr 27, 2021 7:09 am

catstaff wrote:Great, now I have to start baking again. The King Arthur brand flour I have, even when not organic, does not seem to contain added folic acid. Our problem with home-baked goods is they get moldy faster than we can usually eat them.

Just be careful with that - bizarrely they don’t have to include it in the ingredients list. In many states it has to be added to the wheat flour at the mill by law - only way to really be sure i believe is to check with the manufacturer.
41M Australia
2018 Dx RC
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA 14>2>32>16>19>30>140>70
11/18 FOLFOX
3/19 Liver resection
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resection
NED 2 years
11/21 Liver met, PALN, lung nodules
3/22 PVE, lymphadenectomy, liver SBRT
10/22 PALN SBRT
11/22 Liver mets, peri nodule. Xeloda+Bev
4/23 XELIRI+Bev
9/23 ATRIUM trial
12/23 Modified FOLFIRI+Bev
3/24 VAXINIA (CF33 + hNIS) trial

catstaff
Posts: 177
Joined: Wed Mar 03, 2021 11:37 am

Re: Vitamin C infusion to help with neuropathy

Postby catstaff » Tue Apr 27, 2021 8:56 am

I am pretty sure that in the US they have to include it on the label if it's an added ingredient. It appears it's only mandatory in "enriched" products (which generally add other B vitamins). Most commercial non-organic flour in the US is "enriched" (and says so on the ingredients label).
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20-11/20:1.6, 4.3, 3.4, 2.7, 2/21:9.0 3/21:18,40 4/21:28,19, 5/21:13.3,8.6
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-

Sunnycd
Posts: 88
Joined: Fri Feb 26, 2021 10:36 am

Re: Vitamin C infusion to help with neuropathy

Postby Sunnycd » Wed Apr 28, 2021 1:47 am

Thank you all! I am on my chemo break this week, and start my 3rd cycle in 2 days. I thought my hands and feet would get better during the break but it is just as painful. I will ask my onc to change the dosage or try the one week on, one week off instead of two weeks on, one off. I was told to avoid folic acid, and I have looked at ingredients, but did not think about breads and pasta. And I have been eating a LOT of pasta and bread (I have a temporary colostomy, and have lots of dietary restrictions because of it, and pasta and bread were supposed to be safe). I will try to avoid them.
Seems my onc is opposed to vitamin c infusions or at least if I want it, I will have to go to a spa to get it on my own. Vitamin B6...I asked the nurse and she said it might help. I will go get it tomorrow.

In the scheme of things, it seems silly, but I was told I would not lose all my hair, but turns out I am among those that basically lost most of it in just 2 rounds of chemo. Still trying to hang on to it, but have a feeling I will look like that lord of the rings character by the beginning of round 3 :|
DX Feb. ‘21 CC IIB @ 51
Jan. ‘21 ER surgery, temp. colostomy
Sigmoid, adernocarcinoma
T4aN0MX, G2
0/24 lymph nodes
LVI: indefinite
PNI: not identified
Margins: clear
March ‘21 started 4 rounds of CAPOX
06/17/21 last day of CAPOX
06/25/21 CT scan clear
CEA: @ dx 4, post surgery 1.9, post chemo: 2.9; 09/21: 1.5
07/14/21 colostomy reversal
09/24/21 CT clear
10/12/21 colonoscopy; 1 polyp
12/05/23 colonoscopy clear
MSS, RAS/RAF wild, PIK3CA mutant

zephyr
Posts: 363
Joined: Thu Aug 18, 2016 7:31 am

Re: Vitamin C infusion to help with neuropathy

Postby zephyr » Wed Apr 28, 2021 1:36 pm

I don't want to be playing doctor or dietician without a license, just offering some things that helped me and might be worth a discussion with your doctor/nurse. Your mileage may vary.

When I had a bad flare one time, my oncologist prescribed Triamcinolone Acetonide Cream UPS, 0.5% 15 grams. It worked really well but, again, I think if you use it for more than a week or so at a time, it can cause other problems, so ask about timing before you use it.

Avoid going barefoot. This was a tough one for me but I eventually got used to it.
Avoid hot water. I really, really love hot showers but they really did a number on my HFS. I eventually got used to warm showers but cold was a step too far for me.
My husband took over the dishes so my hands wouldn't be in warm water. See if you can enlist family members for that job.

I don't eat a lot of pasta but when I do, I buy organic pasta imported from Italy. I've read posts (elsewhere) by people who claimed that when traveling through Italy they never have gluten or related issues with pasta, so I tried it & it didn't seem to affect my HFS. I've read Trader Joe's carries one; I buy mine at Sprouts (a smaller version of Whole Foods). As far as flours, I've read that King Arthur, Bob's Red Mill, Arrowhead Mills, and Jovial Food Einkorn flours contain no folic acid but, as Rock_Robster mentioned, a call to the manufacture would answer the question. Again, don't worry about naturally occurring folates, only the added/fortified/supplemented synthetic folic acid. If you can tolerate soy, Costco sells an edamame spaghetti noodle by Explore Cuisine. No, it doesn't take like pasta, and I can take it or leave it but it's a decent alternative and my family loves it. A good sauce helps. A friend once told me that a good sauce was the secret to eating anything. I think she was right. One more thought suggested by my naturopathic doc: spaghetti squash. No, doesn't take like pasta, but I really like it. It doesn't really taste like much of anything, very mild. Sort of an angel hair pasta substitute. I cut it in half, remove the seeds, put it face down on parchment paper in a tray, poke it with a fork/knife a few times, and cook it in the toaster oven at about 400 for maybe 30 minutes. When it's done, you take a fork and pull out the "spaghetti" strings.

I sure hope something here will help you.
Nov-2009 Early stage CRC, routine colonoscopy
2010-2014 F/U colonoscopies, all clear
Jun-2016 CRC during F/U colonoscopy, surgery, Stage 4, KRAS, MSS
Aug-2016-May-2018 Folfox, 5FU, Folfiri & Avastin
Aug/Sep-2018 YAG laser surgeries (Germany), 11 nodules removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr-2019 Dec-2020 Xeloda/Avastin, SBRT, cont. Xeloda/Avastin
Mar-2021 Forfiri/Avastin
Mar-2022 Ablation & Thoracotomy
Feb-2023 Folfiri & Avastin
Nov-2023 Xeloda & Avastin

zephyr
Posts: 363
Joined: Thu Aug 18, 2016 7:31 am

Re: Vitamin C infusion to help with neuropathy

Postby zephyr » Wed Apr 28, 2021 1:47 pm

catstaff wrote:Our problem with home-baked goods is they get moldy faster than we can usually eat them.


We store our bread in the freezer and then take out a few pieces as we need it. The slices don't take long to thaw. Just don't store it without first slicing it because I imagine cutting through a loaf of frozen bread would be tough.
Nov-2009 Early stage CRC, routine colonoscopy
2010-2014 F/U colonoscopies, all clear
Jun-2016 CRC during F/U colonoscopy, surgery, Stage 4, KRAS, MSS
Aug-2016-May-2018 Folfox, 5FU, Folfiri & Avastin
Aug/Sep-2018 YAG laser surgeries (Germany), 11 nodules removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr-2019 Dec-2020 Xeloda/Avastin, SBRT, cont. Xeloda/Avastin
Mar-2021 Forfiri/Avastin
Mar-2022 Ablation & Thoracotomy
Feb-2023 Folfiri & Avastin
Nov-2023 Xeloda & Avastin

Rikimaroo
Posts: 436
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: Vitamin C infusion to help with neuropathy

Postby Rikimaroo » Wed Apr 28, 2021 1:52 pm

I used alot of lotion on my hands and feet for HFS. Neuropathy is when you are feeling numbness and tingling sensation in your hands and feet. 5FU/Xeloda causes this HFS. My hand pigmentation got really dark and also peeling feet to replenish the dead affected skin. HFS causes a burning sensation and lotion help alleviate the pain. Especially if you have your wife or someone put it on for you :P
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
LAR/Liver Resect 4/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
CEA 40 right now, but was 57, so folfiri to beat it back down.
Lots of chemo for the past 4 years.

Sunnycd
Posts: 88
Joined: Fri Feb 26, 2021 10:36 am

Re: Vitamin C infusion to help with hand and foot disease

Postby Sunnycd » Wed Apr 28, 2021 8:43 pm

Thank you all for your answers. Yes, I believe it is HFD, rather than neuropathy. Based on everyone’s feedback and the links greentea sent, here is what I’m doing:
- I bought B6 and am taking 200 mg. This in addition to my B12, calcium, D3, hydroxychloroquine (I have Lupus), and biotin (I know, it’s pointless, but I do)
- lots of cream, which I’ve been doing, but now I have a collection of creams. Also putting Neosporin in the skin just under my nails because I have severe cuts in the skin there
- I had been putting my hands in hot water, though w gloves to alleviate the cold sensitivity in the first week of infusion. No more. And no dishes too :)
- emailed doctor to discuss one week on, one off or adjustment in dosages. She called and she decided to postpone this Friday’s chemo by a week to help me recover
- pasta, bread, pastries and pretty much the stuff that brings me joy, I will try to minimize or find an alternative.
DX Feb. ‘21 CC IIB @ 51
Jan. ‘21 ER surgery, temp. colostomy
Sigmoid, adernocarcinoma
T4aN0MX, G2
0/24 lymph nodes
LVI: indefinite
PNI: not identified
Margins: clear
March ‘21 started 4 rounds of CAPOX
06/17/21 last day of CAPOX
06/25/21 CT scan clear
CEA: @ dx 4, post surgery 1.9, post chemo: 2.9; 09/21: 1.5
07/14/21 colostomy reversal
09/24/21 CT clear
10/12/21 colonoscopy; 1 polyp
12/05/23 colonoscopy clear
MSS, RAS/RAF wild, PIK3CA mutant


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