"Second line" treatment for EGFR rash?

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ginabeewell
Posts: 368
Joined: Wed Oct 24, 2018 10:30 am

"Second line" treatment for EGFR rash?

Postby ginabeewell » Thu Jun 27, 2019 10:42 am

I've had a mean Vectibix rash since beginning chemo last October.

Shortly after it appeared, the dermatologist started me on twice-daily doxycycline and application of topical steroids: desoximetasone and one other slightly less strong. A few weeks ago, it's like my face exploded again and the rash is now growing in other places on my body: chest, back, butt, etc. It's almost like my body developed tolerance for the steroid cream and it no longer works - except to make dark hairs grow all over!!

Has anyone explored something further to treat the rash? In reading online last night, it seems like retinols are sometimes used and I even saw several references to Accutane (which has a whole slew of side effects of its own). Just wondering if those are still being used and if anyone has had success with them?
45 year old mom of twins (8) and lucky stepmom of 14 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 CT 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 HAI pump placement / colon resection
4/8/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/19 1st liver resection
10/16/19 2nd liver resection

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ginabeewell
Posts: 368
Joined: Wed Oct 24, 2018 10:30 am

Re: "Second line" treatment for EGFR rash?

Postby ginabeewell » Thu Jul 04, 2019 10:15 pm

Went to the dermatologist at the start of this week and wanted to update this in case anyone searches in the future.

She prescribed a stronger steroid cream - Clobetasol - and asked me to use it twice daily for two weeks. Then hopefully it will get knocked back enough to be maintained with Desoximetasone.

I’ll check back in in a month to see if things are better. And if not, Accutane might be the next step. She said she just prescribed that for a patient with an EGFR rash the other week, so hopefully she will have a sense of whether that works by the time I head back in.
45 year old mom of twins (8) and lucky stepmom of 14 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 CT 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 HAI pump placement / colon resection
4/8/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/19 1st liver resection
10/16/19 2nd liver resection

Pyro
Posts: 305
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: "Second line" treatment for EGFR rash?

Postby Pyro » Fri Jul 05, 2019 5:48 am

ginabeewell wrote:Went to the dermatologist at the start of this week and wanted to update this in case anyone searches in the future.

She prescribed a stronger steroid cream - Clobetasol - and asked me to use it twice daily for two weeks. Then hopefully it will get knocked back enough to be maintained with Desoximetasone.

I’ll check back in in a month to see if things are better. And if not, Accutane might be the next step. She said she just prescribed that for a patient with an EGFR rash the other week, so hopefully she will have a sense of whether that works by the time I head back in.


If done all the above, the doxycycline works the best but found I had to start taking it the day before my first infusion. I had a steroid cream for my face, the name escapes me, and that seemed to help. The problem with the topical creams is eventually, your skin is so raw, it hurts too much to put on and I’m left with the antibiotic only.
Aug 2015- 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
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!

User avatar
ginabeewell
Posts: 368
Joined: Wed Oct 24, 2018 10:30 am

Re: "Second line" treatment for EGFR rash?

Postby ginabeewell » Fri Jul 05, 2019 8:46 am

Pyro wrote:
If done all the above, the doxycycline works the best but found I had to start taking it the day before my first infusion. I had a steroid cream for my face, the name escapes me, and that seemed to help. The problem with the topical creams is eventually, your skin is so raw, it hurts too much to put on and I’m left with the antibiotic only.


Oh yes, I’m on doxycycline twice a day too. And agree the cream is starting to make my face hurt; it’s one of the reasons I’m feeling like Accutane might at some point be a better option.
45 year old mom of twins (8) and lucky stepmom of 14 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 CT 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 HAI pump placement / colon resection
4/8/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/19 1st liver resection
10/16/19 2nd liver resection

AmyG
Posts: 296
Joined: Tue Dec 25, 2018 8:08 pm

Re: "Second line" treatment for EGFR rash?

Postby AmyG » Fri Jul 05, 2019 8:57 am

That rash sounds awful, I'm so sorry you have to deal with it. I'll embrace my side effects and be thankful I don't have to mess with that bullshit!
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3

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GrouseMan
Posts: 821
Joined: Mon Aug 12, 2013 12:30 pm
Location: SE Michigan USA

Re: "Second line" treatment for EGFR rash?

Postby GrouseMan » Fri Jul 05, 2019 1:23 pm

You might also find the use of Benadryl useful. Early on when dosing CI-1033 (Predecessor to several EGFr inibitors) our clinician's put clinical trial folks taking CI-1033 on Benadryl which helped a great deal with the rash. Your mileage may vary but what's really the harm?

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


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