Treating the Erbitux Rash

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hopefulandstrong
Posts: 25
Joined: Fri Apr 19, 2019 7:11 pm

Treating the Erbitux Rash

Postby hopefulandstrong » Thu May 16, 2019 11:18 am

Hi all -

Can folks who are on Erbitux -- and other agents that cause "the rash"-- comment on how they treat it? I am about to begin this treatment, and I want to see the rash -- to know it's working. But I also would like to control it. Is that asking too much?

Thanks, as always, for your insight.
54, female
1/8/19 DS Stage 4 with Liver Mets
1/11/19 Successful Colon Resect -- 12 inches of transverse colon removed
2/9/19 PET scan with disease confined to liver
2/18/19 Started Folfox -- CEA 70
5/1/19 -- Scans show progression -Switch to Folfiri
5/8/19 - BRAF mutation -- switch again to Triplet Therapy: Encorafenib, Binimetinib, Cetximab
6/13/19 - CEA dropped from 214 to 22
7/16/19 - CEA 2.8
8/1/19 - CT scan reveals 4 liver mets shrunk -- all under 3.1 CM.

User avatar
ginabeewell
Posts: 273
Joined: Wed Oct 24, 2018 10:30 am

Re: Treating the Erbitux Rash

Postby ginabeewell » Thu May 16, 2019 11:44 am

I did some reading about the rash once it came on, and everything I read suggested you start treating it BEFORE it comes. Best practice is to start Doxycycline two weeks prior as well as steroid cream.

I’m now on Doxycycline twice a day and I have two different steroid creams I alternate using morning and night. I also have high quality moisturizers I have invested in - serums from La Mer and True Botanicals. (The former is best for skin that needs actual repair and the latter is more proactive moisture.)

This stuff keeps the rash sort of in check but to be honest it is still there and visible. My aunt who works in makeup sent me La Mer foundation which is expensive but miraculous for cover up, as it covers and also does not dry the skin. When people tell me I look good, this is what I credit!!

I know the belief is that you need to see the rash to know it’s working, but honestly if you can start pre-treating and avoid most of it, you’ll save yourself a lot of grief.
45 year old mom of twins (7) and lucky stepmom of 13 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 Surgery: HAI pump placement / colon resection
4/8/19 Resume chemo (#9-12) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/18: 1st of 2 liver resections

Pyro
Posts: 277
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Treating the Erbitux Rash

Postby Pyro » Thu May 16, 2019 1:24 pm

I second everything Gina said, I’d add skin glue for the fingers and toes. They may split open and bleed everywhere.
Aug 2015- Diag Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail, CEA @36
Jun 2019 - FOLFURI until I can’t stand it

User avatar
ginabeewell
Posts: 273
Joined: Wed Oct 24, 2018 10:30 am

Re: Treating the Erbitux Rash

Postby ginabeewell » Thu May 16, 2019 1:33 pm

Pyro wrote:I second everything Gina said, I’d add skin glue for the fingers and toes. They may split open and bleed everywhere.


Yes, this. My dermatologist suggested SuperGlue and I carry it with me at all times in my purse so that I can address splits as they happen!
45 year old mom of twins (7) and lucky stepmom of 13 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 Surgery: HAI pump placement / colon resection
4/8/19 Resume chemo (#9-12) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/18: 1st of 2 liver resections

hopefulandstrong
Posts: 25
Joined: Fri Apr 19, 2019 7:11 pm

Re: Treating the Erbitux Rash

Postby hopefulandstrong » Fri May 17, 2019 3:06 pm

Oh dear! superglue. When does that start to happen?
54, female
1/8/19 DS Stage 4 with Liver Mets
1/11/19 Successful Colon Resect -- 12 inches of transverse colon removed
2/9/19 PET scan with disease confined to liver
2/18/19 Started Folfox -- CEA 70
5/1/19 -- Scans show progression -Switch to Folfiri
5/8/19 - BRAF mutation -- switch again to Triplet Therapy: Encorafenib, Binimetinib, Cetximab
6/13/19 - CEA dropped from 214 to 22
7/16/19 - CEA 2.8
8/1/19 - CT scan reveals 4 liver mets shrunk -- all under 3.1 CM.

User avatar
ginabeewell
Posts: 273
Joined: Wed Oct 24, 2018 10:30 am

Re: Treating the Erbitux Rash

Postby ginabeewell » Fri May 17, 2019 3:28 pm

hopefulandstrong wrote:Oh dear! superglue. When does that start to happen?


Not right away. I think I was 4 or so cycles in before I started to experience that. The rash is the first thing to hit.
45 year old mom of twins (7) and lucky stepmom of 13 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 Surgery: HAI pump placement / colon resection
4/8/19 Resume chemo (#9-12) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/18: 1st of 2 liver resections

Pyro
Posts: 277
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Treating the Erbitux Rash

Postby Pyro » Fri May 17, 2019 3:45 pm

hopefulandstrong wrote:Oh dear! superglue. When does that start to happen?


Again, Gina is correct. I found it was my finger/toe nails breaking open the skin around them, from just walking or picking something up.
Aug 2015- Diag Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail, CEA @36
Jun 2019 - FOLFURI until I can’t stand it

VeggieLvr
Posts: 61
Joined: Fri Mar 09, 2018 3:02 pm
Location: NY

Re: Treating the Erbitux Rash

Postby VeggieLvr » Sat May 18, 2019 3:50 pm

When I started on Erbitux I decided not to take the antibiotic (Minocycline) because I just don't like antibiotics - well once the rash started in earnest it was crazy - basically tons of tiny pimples all over my face (that I couldn't help not squeezing!). So I started the Minocycline (100 mg once a day) and the rash cleared up very quickly.

As far as the finger cuts, I found an amazing product called CrackZapIt! (you can get it on Amazon). It's like a chapstick and it works amazingly well to not only treat the cuts so they heal but to prevent them. What I do it put the stuff all over my fingers every night right before bed (I really slather it on as much as I can) and then sleep - I have no cuts on my hands now (whereas when I started treatment, before using CrackZapIt!, I had 10-15 cuts all over my fingers).

I mention it every time I go for treatment now (both to Sandy at MSK and to the nurses) - this stuff is amazing! (I should probably start a new post about it!). The liquid bandaids that they recommended did nothing for me (except hurt every time I used it!).
F, 42, Stage IV CC
2/23/18 - colonoscopy/virtual colonoscopy, diagnosed CC
3/6/18 - left hemicolectomy, 12" removed, clear margins. Multiple mets to lymph nodes (removed), omentum & liver, 1 possible lung met
4/6/18 - port install
4/9/18 - Folfox (Oxaliplatin/Leucovorin/5FU) 4 rounds
6/19/18 - liver resection, HAI pump install
8/30/18 - Folfiri (Irinotecan/Leucovorin/5FU)
12/5/18 - Erbitux added
5/28/19 - 2nd liver resection/ablation

hopefulandstrong
Posts: 25
Joined: Fri Apr 19, 2019 7:11 pm

Re: Treating the Erbitux Rash

Postby hopefulandstrong » Sun May 19, 2019 12:12 pm

Wondering about things like retinols and AHA/ABA acids. I spend a lot of time on my skin, and, as a 54 year-old with some sun damage, these are very helpful. But not sure how think of this in terms of drug interactions.

Also, I'm gathering from your (very helpful) comments that things like excessive moisturizing of hands and feet don't get it done either..

Also, anybody else here on the triplet therapy?

Thanks, as always?
54, female
1/8/19 DS Stage 4 with Liver Mets
1/11/19 Successful Colon Resect -- 12 inches of transverse colon removed
2/9/19 PET scan with disease confined to liver
2/18/19 Started Folfox -- CEA 70
5/1/19 -- Scans show progression -Switch to Folfiri
5/8/19 - BRAF mutation -- switch again to Triplet Therapy: Encorafenib, Binimetinib, Cetximab
6/13/19 - CEA dropped from 214 to 22
7/16/19 - CEA 2.8
8/1/19 - CT scan reveals 4 liver mets shrunk -- all under 3.1 CM.

User avatar
ginabeewell
Posts: 273
Joined: Wed Oct 24, 2018 10:30 am

Re: Treating the Erbitux Rash

Postby ginabeewell » Sun May 19, 2019 12:40 pm

hopefulandstrong wrote:Wondering about things like retinols and AHA/ABA acids. I spend a lot of time on my skin, and, as a 54 year-old with some sun damage, these are very helpful. But not sure how think of this in terms of drug interactions.

Also, I'm gathering from your (very helpful) comments that things like excessive moisturizing of hands and feet don't get it done either..

Also, anybody else here on the triplet therapy?

Thanks, as always?


I have used Retin-A during breaks when I’m not on Vectibix. (The rash hangs out for a while and in my case left what feel like acne pockmarks - I thought the Retin-A helped with these a bit.) I think it’s too strong to use when your skin is actually on chemo. I did use a serum from True Botanicals and their Vitamin C powder occasionally. They warned me the powder might be too strong but I think it was ok.

I vary in my commitment to Aquaphor applied at night under white gloves and socks. It actually does really help if you do it religiously. But sometimes I am not as proactive as I should be! You’re reminding me I should get back to that. I’ve really liked Weleda Skin Food for daytime moisturizer but nothing beats the Aquaphor at night.

The rash is a huge bummer, and I’ve promised myself when I am done with all this I am going to a dermatologist and spending whatever I need to spend to have her peel off all my skin so I can start over!!!
45 year old mom of twins (7) and lucky stepmom of 13 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 Surgery: HAI pump placement / colon resection
4/8/19 Resume chemo (#9-12) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/18: 1st of 2 liver resections

hopefulandstrong
Posts: 25
Joined: Fri Apr 19, 2019 7:11 pm

Re: Treating the Erbitux Rash

Postby hopefulandstrong » Sun May 19, 2019 1:14 pm

Yes. Something to look forward to!
54, female
1/8/19 DS Stage 4 with Liver Mets
1/11/19 Successful Colon Resect -- 12 inches of transverse colon removed
2/9/19 PET scan with disease confined to liver
2/18/19 Started Folfox -- CEA 70
5/1/19 -- Scans show progression -Switch to Folfiri
5/8/19 - BRAF mutation -- switch again to Triplet Therapy: Encorafenib, Binimetinib, Cetximab
6/13/19 - CEA dropped from 214 to 22
7/16/19 - CEA 2.8
8/1/19 - CT scan reveals 4 liver mets shrunk -- all under 3.1 CM.


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