Erbitux/Vectibix/EGFR rash trajectory

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shade
Posts: 161
Joined: Thu Feb 20, 2014 7:08 pm

Erbitux/Vectibix/EGFR rash trajectory

Postby shade » Fri Nov 11, 2022 6:25 pm

Hi all,

It has been 8 days since my first Vectibix infusion (delivered with irinotecan). My face, neck and chest have broken out in a rash and my nose is too sore to blow it. I am already on an oral antibiotic, and am using the moisturizers and the SPF goo in the care kit they gave me. My oncologist advised me not to look at rash pictures on the internet (I already had seen them) and told me I would most likely just get a ruddiness (“like a sailor” he told me), that it wouldn’t affect my work, and that all would be fine. I could go off on a tangent here about the many doctors on my cancer journey who downplayed the side effects of chemo (stivarga=unable to walk) or functional impairments after uLAR surgery (LARS), only to shrug later and tell me that everyone's mileage varies.

I look more like a very unfortunate teenager than a ruddy sailor, with a serious hives case from the neck to chest. This after a week. I have not gone back to work yet. There is no way I can get through a workday without concerned questions, and I am very private about my health at work. It would take a lot of very obvious tinted coverup to hide my rash, which goes well up into my bald scalp. Also, over the last decade, I have spent many hours in clinical settings where cancer patients go, and seen hundreds of other patients in waiting rooms, at infusion clinics, etc., and I have never noticed anyone else with a rash like I am seeing in the mirror. I asked my favorite infusion nurse, and he said he doesn’t remember seeing EGFR rash on a patient, but then he added the infusion center doesn't treat many patients who get EGFR. This is at a very busy comprehensive cancer care center, with a great reputation for CR cancer.

Anyone have experience to share? Am I the only person who takes this stuff? Does the rash keep getting worse or does it level off after a certain point? Any palliative interventions that help?

Thanks in advance…
Stage IV rectal
10/12 Cancerous polyp removed age 51
6/14 uLAR and resected liver met
12/14 finished FOLFOX / Avastin
1/15 ilio reversed = LARS!!!
1/20 onc said “cured!” - no further monitoring unnecessary
5/21 chest pain revealed new lung mets… radiation
10/21 maintenance avastin/xeloda
9/22 stivarga 2 weeks, d/c'd due to foot pain
10/22 vectabix + irinotecan

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ginabeewell
Posts: 562
Joined: Wed Oct 24, 2018 10:30 am

Re: Erbitux/Vectibix/EGFR rash trajectory

Postby ginabeewell » Fri Nov 11, 2022 9:40 pm

I have posted a ton about Vectibix here and on my blog. You can search here, or feel free to check this page on my blog where I summarized my experience.

Can confirm it is the worst. Having said that, I 100% believe it was what saved my life.

Pm me if you have questions after checking this out:

https://www.weareallmadeofstars.net/vectibix-how-to
49 YO mom of twins (11) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
Currently NED!

Join me on a lookback of my journey via my Strive for Five on Substack here:
https://ginajacobson.substack.com

All treatment details here:
https://www.weareallmadeofstars.net/col ... nt-journey

My favorite posts here:
https://weareallmadeofstars.net/favorite-posts

User avatar
ginabeewell
Posts: 562
Joined: Wed Oct 24, 2018 10:30 am

Re: Erbitux/Vectibix/EGFR rash trajectory

Postby ginabeewell » Fri Nov 11, 2022 9:45 pm

This is less how to and more about the emotional impact of Vectibix, but I’ve talked about it in my Substack too - a project where I’m looking back on my four year journey and reflecting on it from today:

https://open.substack.com/pub/ginajacob ... paign=post
49 YO mom of twins (11) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
Currently NED!

Join me on a lookback of my journey via my Strive for Five on Substack here:
https://ginajacobson.substack.com

All treatment details here:
https://www.weareallmadeofstars.net/col ... nt-journey

My favorite posts here:
https://weareallmadeofstars.net/favorite-posts

User avatar
GrouseMan
Posts: 877
Joined: Mon Aug 12, 2013 12:30 pm
Location: SE Michigan USA

Re: Erbitux/Vectibix/EGFR rash trajectory

Postby GrouseMan » Sat Nov 12, 2022 10:34 am

You might give Benadryl a try. In the early years of EGFr inhibitor clinical trials our first EGFr drug we had the trial patients take Benadryl and that seemed to help. Probably in combination with the oral antibiotic you are taking it might make things tolerable for you. My wife was on Erbitux for over a year and was taking 500 mg Cephalexin twice a day and that helped her a lot. Interesting thing about the EGFr inhibitors is when they quit working you can drop them for a while and come back to them later. Seems the tumors often revert back to the earlier pathway and can become effective again. I've posted several times about them since I used to work in that area once upon a time. I wish the Oncologists for CRC would start to take a closer look at the second and third generation irreversible small molecule inhibitors that have been targeting Lung Cancer.

Good Luck
GrouseMan
DW 53 dx Jun 2013
CT mets Liver Spleen lung. IVb CEA~110
Jul 2013 Sig Resct
8/13 FolFox,Avastin 12Tx mild sfx, Ongoing 5-FU Avastin every 3 wks.
CEA: good marker
7/7/14 CT Can't see the spleen Mets.
8/16/15 CEA Up, CT new abdominal mets. Iri, 5-FU, Avastin every 2 wks.
1/16 Iri, Erbitux and likely Avastin (Trial) CEA going >.
1/17 CEA up again dropped from Trial, Mets growth 4-6 mm in abdomen
5/2/17 Failed second trial, Hospitalized 15 days 5/11. Home Hospice 5/26, at peace 6/4/2017

shade
Posts: 161
Joined: Thu Feb 20, 2014 7:08 pm

Re: Erbitux/Vectibix/EGFR rash trajectory

Postby shade » Sat Nov 12, 2022 5:52 pm

Thanks for the responses…need to digest all of this info. And any other input welcome.
Stage IV rectal
10/12 Cancerous polyp removed age 51
6/14 uLAR and resected liver met
12/14 finished FOLFOX / Avastin
1/15 ilio reversed = LARS!!!
1/20 onc said “cured!” - no further monitoring unnecessary
5/21 chest pain revealed new lung mets… radiation
10/21 maintenance avastin/xeloda
9/22 stivarga 2 weeks, d/c'd due to foot pain
10/22 vectabix + irinotecan

Bpaint
Posts: 40
Joined: Sun Oct 11, 2020 8:54 pm

Re: Erbitux/Vectibix/EGFR rash trajectory

Postby Bpaint » Sun Nov 13, 2022 3:20 pm

My husband has been on and off Vectibix for 18 months. He always has the rash. Sometimes it is worse than other times. His first round, it was really bad in the beginning all over his face, chest, back and legs, and caused a lot of blood stained pillows. This time around his face isn’t as bad but his arms and chest are very inflamed. Strong hydrocortisone is what works the best for him, as well as expensive face and body creams. (I think he likes Kiehls the best.) The sun and heat make it worse. It sucks and is terribly uncomfortable sometimes, but he’s gotten used to it, and prefers it to the side effects of Folfox or Folfiri.
My husband (age 41 at dx):
8/20 CRC Stage 4. Mets to lungs, liver, distant lymph nodes (25+)
MSS, KRAS wild
CEA 713 at dx
Folfox (12 rounds)
CEA 113
Liver, colon and lymph node resection 4/21
New lung mets, Vectibix monotherapy started 6/21
Stop Vectibix
Start Folfiri + avastin January 2022


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