Managing HFS side effects

Please feel free to read, share your thoughts, your stories and connect with others!
Siti
Posts: 209
Joined: Thu Aug 01, 2019 10:58 am

Managing HFS side effects

Postby Siti » Mon Apr 12, 2021 9:47 am

As some of you are aware (if you’ve been following my posts), my husband suffered pretty bad HFS while on Capecitabine. He eventually switched to Teysuno and has been on it for about a year now. HFS improved but it was still bad. He tried pretty much every cream on the market but finally found one that worked, it was recommended by the hospital’s head nurse recently — she specialises in treating chemo side effects.

Anyway the cream is actually meant for haemorrhoids but apparently worked wonders on his feet. I’ve included the link here, sorry it’s in Dutch but perhaps you can find a similar cream in your respective country with the same active ingredients that could work for you too.

https://www.avogel.nl/product/geneesmid ... iszalf.php
Wife of DH (54) DX on 5/7/19
Sigmoid | Adenocarcinoma | Grade: G3 | LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 7
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!! 20/12/19 Last round of Ox (NED)
1/2020 Maintenance: Cap + Avastin
4/2020 Maintenance: switch to Teysuno (S-1) + Avastin due to bad HFS side effects.

User avatar
Green Tea
Posts: 367
Joined: Mon Oct 24, 2016 10:48 am

Re: Managing HFS side effects

Postby Green Tea » Mon Apr 12, 2021 2:48 pm

Siti wrote:... Anyway the cream is actually meant for haemorrhoids but apparently worked wonders on his feet. I’ve included the link here, sorry it’s in Dutch but perhaps you can find a similar cream in your respective country with the same active ingredients that could work for you too.

https://www.avogel.nl/product/geneesmid ... iszalf.php

According to the link you provided, the active ingredients of your A.Vogel cream product are:
Echinacea purpurea,
Hamamelis virginiana,
Hypericum perforatum,
Tritici aestivi oleum

For what it's worth, the closest match I could find in the U.S. market is this skin cream, but it only has the Echinacea Purpurea component:
https://www.amazon.com/A-Vogel-Echinacea-Cream-35g/dp/B003OEF41O/
A.Vogel Echinacea Cream Contains The Extracts Of Certified Organically Grown Wild Pansy And Echinacea Flowers And Roots From Our Own Cultivations. A Combination Of The Fresh Extracts Of Echinacea Purpurea And Wild Pansy (Viola Tricolor).

This Cream Is:- Anti-Infective, Anti-Inflammatory, Nourishing And Soothing. Useful Where Skin Is Red And Inflamed Such As Minor Cuts, Sunburn, Acne And Nettle Rash.

Ingredients (Inci): Aqua (Water), Hydrogenated Peanut Oil, Propylene Glycol,Echinacea Purpurea (Aqua/Alcohol) (Coneflower Extract (Water/Alcohol), Viola Tricolor (Aqua/Water)(Pansy Extract (Water/Alcohol), Cetearyl Alcohol, Sodium Lauryl Sulphate, Sodium Cetearyl Sulphate, Methyl Parabene, Propyl Parabene. Allergy Information: Contains Peanut Oil.

Directions For Use: Use As Aften As Needed. For External Use Only, Avoid Contact With Eyes.

In the U.S., products like Udder Cream, Eucerin, Moo-Goo, Bag Balm, Aquaphor, etc., are some of the more popular ones:

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=39502&p=282282#p282282
·

User avatar
beach sunrise
Posts: 413
Joined: Thu Mar 05, 2020 7:14 pm

Re: Managing HFS side effects

Postby beach sunrise » Mon Apr 12, 2021 4:36 pm

Thanks so much for posting this, Siti! I will dicipher it in english later and put it my my files :) Being on maintenance for so long now the burts bees is what I am doing and so far its working. I haven't had HFS and hope to prevent it.
I hope you all are doing well!
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
High dose IVC 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
8 rds 6-10 CEA 11.4 4 more no oxa
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

Siti
Posts: 209
Joined: Thu Aug 01, 2019 10:58 am

Re: Managing HFS side effects

Postby Siti » Mon Apr 12, 2021 6:49 pm

Thanks for summarising Green Tea!

My husband tried — Udderly Smooth, Eucerin, Working Hands, Burts Bees Salve plus a handful of other moisturisers with UREA in it. According to him, the haemorrhoid cream worked best on his feet as he can really feel the difference. I am wondering if it has to do with the anti-inflammatory effect?

Sorry I forgot to mention earlier, he applied this on his feet only, not hands.
Wife of DH (54) DX on 5/7/19
Sigmoid | Adenocarcinoma | Grade: G3 | LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 7
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!! 20/12/19 Last round of Ox (NED)
1/2020 Maintenance: Cap + Avastin
4/2020 Maintenance: switch to Teysuno (S-1) + Avastin due to bad HFS side effects.

catstaff
Posts: 45
Joined: Wed Mar 03, 2021 11:37 am

Re: Managing HFS side effects

Postby catstaff » Mon Apr 12, 2021 7:10 pm

Hamamelis virginiana is witch hazel, extracts of which are widely available in the US, but I am not sure whether one might be able to mix it with other lotions to replicate this. Witch hazel is an astringent, which makes swollen tissue shrink. Most over-the-counter hemorrhoid creams have astringents/vasoconstrictors as their active ingredients. Preparation H's "cooling gel" has a high proportion of witch hazel.
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, 1/20:1.6, 3/20:4.3, 8/20:3.4, 11/20:2.7, 2/21:9.0 3/21:18,40 4/21:28,19
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-

rp1954
Posts: 1544
Joined: Mon Jun 13, 2011 1:13 am

Re: Managing HFS side effects

Postby rp1954 » Mon Apr 12, 2021 7:20 pm

At least some people are able to eliminate HFS for Xeloda with IV vitamin C about twice a week, out to about 4-5 days interval.
I first found this in a ~2000s case history by Riordan clinic and have seen other examples since then.
IV vitamin C works best on KRAS mutants, and with additional mild adjuncts based on living tissue cell tests in the lab.

UFT is not so HFS prone, different side effect profile.
My wife had essentially no side effects problems with her oral 5FU prodrug chemo, UFT, based on tegafur, doing IV vitamin C frequently.
S-1 is a tegafur based drug with a different more powerful, irreversible DPD enzyme inhibitor.
Maybe RIordan Clinic could fill in their HFS - IV C experience with Xeloda and other chemo drugs since then.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C

User avatar
beach sunrise
Posts: 413
Joined: Thu Mar 05, 2020 7:14 pm

Re: Managing HFS side effects

Postby beach sunrise » Mon Apr 12, 2021 8:26 pm

Ah thanks, rp, for the reminder that's why I have never had HFS. It's the IVC. I forget alot of times it does much more than kill cancer I guess because its so routine, natural part of my day 2x wk. In any case I do have soft feet :) and want to keep it that way for sure.
I think its absolutely amazing about your wife!!! I hope to always be side effect free too.
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
High dose IVC 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
8 rds 6-10 CEA 11.4 4 more no oxa
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

Siti
Posts: 209
Joined: Thu Aug 01, 2019 10:58 am

Re: Managing HFS side effects

Postby Siti » Wed Apr 14, 2021 10:23 am

catstaff wrote:Hamamelis virginiana is witch hazel, extracts of which are widely available in the US, but I am not sure whether one might be able to mix it with other lotions to replicate this. Witch hazel is an astringent, which makes swollen tissue shrink. Most over-the-counter hemorrhoid creams have astringents/vasoconstrictors as their active ingredients. Preparation H's "cooling gel" has a high proportion of witch hazel.


I think this makes sense. Perhaps it’s the vasoconstrictor that reduces inflammation that causes the pain. I read Preparation H has been used by celebrities to reduce under eye-bags! I guess theoretically it should work but I’m not going to try haemorrhoid cream around my eyes! LOL

RP — my husband hasn’t tried IV vitamin C and we’ll definitely keep that in mind at his next oncologist appointment.
Wife of DH (54) DX on 5/7/19
Sigmoid | Adenocarcinoma | Grade: G3 | LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 7
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!! 20/12/19 Last round of Ox (NED)
1/2020 Maintenance: Cap + Avastin
4/2020 Maintenance: switch to Teysuno (S-1) + Avastin due to bad HFS side effects.

catstaff
Posts: 45
Joined: Wed Mar 03, 2021 11:37 am

Re: Managing HFS side effects

Postby catstaff » Wed Apr 14, 2021 5:29 pm

This article https://oncologypro.esmo.org/oncology-in-practice/palliative-and-supportive-care/multikinase-inhibitor-related-skin-toxicity/healthcare-professionals/prophylaxis-and-treatment/reactive-management/hand-foot-skin-reaction specifically mentions witch hazel, along with other vasoconstrictors and astringents, as a palliative for HFS. It relieves the burning and pain for pretty much the same reason as it works for hemorrhoids.
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, 1/20:1.6, 3/20:4.3, 8/20:3.4, 11/20:2.7, 2/21:9.0 3/21:18,40 4/21:28,19
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-

Beza1422
Posts: 8
Joined: Wed Apr 21, 2021 2:45 am

Re: Managing HFS side effects

Postby Beza1422 » Sun Apr 25, 2021 8:34 am

rp1954 I have been going through all your past posts in search of help with progression and diagnosis for my Mom. Would love to and would be SO appreciative to consult with you in regards to your professional opinion and recommendations. Would be FOREVER grateful to you if you could please reach out as I am not sure any other way to contact you. My email is ezarik.breanne@gmail.com... Thank you and God bless you for the help you have provided so many with!

rp1954 wrote:At least some people are able to eliminate HFS for Xeloda with IV vitamin C about twice a week, out to about 4-5 days interval.
I first found this in a ~2000s case history by Riordan clinic and have seen other examples since then.
IV vitamin C works best on KRAS mutants, and with additional mild adjuncts based on living tissue cell tests in the lab.

UFT is not so HFS prone, different side effect profile.
My wife had essentially no side effects problems with her oral 5FU prodrug chemo, UFT, based on tegafur, doing IV vitamin C frequently.
S-1 is a tegafur based drug with a different more powerful, irreversible DPD enzyme inhibitor.
Maybe RIordan Clinic could fill in their HFS - IV C experience with Xeloda and other chemo drugs since then.

rp1954
Posts: 1544
Joined: Mon Jun 13, 2011 1:13 am

Re: Managing HFS side effects

Postby rp1954 » Wed May 05, 2021 1:25 pm

Beza1422 wrote:rp1954 ... regards to your professional opinion and recommendations.

I'm mostly tired and retired here folks. 11 years is a long time. So don't count on my timely presence and responses.
I don't have professional medical opinions, just personal ones.
Most of my discussions are here, on the board, not via email.

People who just show up for help without much conversation are at a disadvantage for help - we are not mentalists.
For me, no blood numbers - no idea.

Frankly people slow on getting the blood numbers trotted out (privacy, insurance, $, or "dr No knows best" problems) are probably too far behind be very successful with the situational demands of a comprehensive alternative medicine approach.
This is not a sport with some loose plays tried, it is an attentive war of extermination. For us, a long one - the short version wasn't nice.
We had to do many numbers again, again, again, and again to gain or keep control, and to personalize them for various phenomena.
Missing the early data complicates things, and misses chances.
Each shot you take should be carefully aimed and tracked, by the numbers.
(different kinds of number sets apply so an initially broad net is a good idea)

An example:
Newbies here often blindly bank on early cimetidine tx's and CA199's published odds (high CA199+CSLEX1 is pretty common for CRC) but the population here is different, the odds seem reversed with an amazing percentage of ultralow CA199's (pretreatment peak CA199 under 2) who could not possibly benefit from cimetidine. So many times I ask, people blow CA199 blood marker off ($,dr) and then find out they are ultralow(UL) on CA199 later - I think the UL% that tried CIM here is over 3x normal CRC population (7-10%). Nevermind simply below median CA199. CA199 is often a difficult marker series, less informative, pricier than CEA too. But that first early (near dx) CA199, can be a very valuable one.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C

Beza1422
Posts: 8
Joined: Wed Apr 21, 2021 2:45 am

Re: Managing HFS side effects

Postby Beza1422 » Thu May 06, 2021 1:26 pm

I am new here and researching on behalf of my mom. Two years ago she was diagnosed with stage III moderately differentiated adenocarcinoma. She was on Xeloda in addition to radiation prior to surgery. Underwent surgery 7/2019, where she opted for a colostomy in hopes that they would be able to remove the tumor and any surrounding lymph nodes effected. She declined post surgical chemotherapy. Now, two years later unfortunately her PETCT scan showed two 1.1cm hypermetabolic left supraclavicular lymph nodes, low level suv activity at the post surgical anatomical surgical site at the rectum, focal activity in pelvis (underwent pelvic ultrasound that showed no detection of lesions), hypermetabolic 0.9 cm focus in lower abdominal mesentary/small bowel (max SUV 7.2) at the level of ureters that’s causing hydronephrosis with additional lymph nodes in the aortocabal regions measuring 1.5 cm X 1.3 cm (max SUV 6.4)
CEA 70.4
Tumor immunochemistry: HER negative, NTRK 1,2,3 negative, normal expression for MLH1, PMS2, MSH2, MSH6, microsatellite stable.
I am in search of a good naturopath oncologist for supplementation options prior to chemo treatment and also any information or suggestions of where to go from here. FNAC of the left supraclavicular lymph nodes confirmed adenocarcinoma necrosis and I am just seeking any and all help as my mom is my world and I want to do everything and anything at any cost to help cure her! Thank you I’m advance for any and all help and recommendations or information!


rp1954 wrote:
Beza1422 wrote:rp1954 ... regards to your professional opinion and recommendations.

I'm mostly tired and retired here folks. 11 years is a long time. So don't count on my timely presence and responses.
I don't have professional medical opinions, just personal ones.
Most of my discussions are here, on the board, not via email.

People who just show up for help without much conversation are at a disadvantage for help - we are not mentalists.
For me, no blood numbers - no idea.

Frankly people slow on getting the blood numbers trotted out (privacy, insurance, $, or "dr No knows best" problems) are probably too far behind be very successful with the situational demands of a comprehensive alternative medicine approach.
This is not a sport with some loose plays tried, it is an attentive war of extermination. For us, a long one - the short version wasn't nice.
We had to do many numbers again, again, again, and again to gain or keep control, and to personalize them for various phenomena.
Missing the early data complicates things, and misses chances.
Each shot you take should be carefully aimed and tracked, by the numbers.
(different kinds of number sets apply so an initially broad net is a good idea)

An example:
Newbies here often blindly bank on early cimetidine tx's and CA199's published odds (high CA199+CSLEX1 is pretty common for CRC) but the population here is different, the odds seem reversed with an amazing percentage of ultralow CA199's (pretreatment peak CA199 under 2) who could not possibly benefit from cimetidine. So many times I ask, people blow CA199 blood marker off ($,dr) and then find out they are ultralow(UL) on CA199 later - I think the UL% that tried CIM here is over 3x normal CRC population (7-10%). Nevermind simply below median CA199. CA199 is often a difficult marker series, less informative, pricier than CEA too. But that first early (near dx) CA199, can be a very valuable one.

rp1954
Posts: 1544
Joined: Mon Jun 13, 2011 1:13 am

Re: Managing HFS side effects

Postby rp1954 » Thu May 06, 2021 9:15 pm

watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: kaloy85 and 3 guests