RED, irritated face with Irinotecan + Vectobix

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jep
Posts: 260
Joined: Sun Jun 11, 2017 7:45 pm
Location: New England, USA

RED, irritated face with Irinotecan + Vectobix

Postby jep » Sat Nov 10, 2018 7:41 am

Hi everyone. My husband had his first treatment of Irinotecan + Vectobix almost 2 weeks ago and his nose is bright red and he feels like his entire face is "chapped." He's been trying Aquaphor, but I'm wondering if anyone has had success with other products. We are heading into a long New England winter, and I'm fearing that his skin will only get worse. Thank you for your input, and a huge thanks to all of our Veterans as we enjoy this long weekend . . .
jep
Stage IV CC 5/16/17
Loc: recto-sig
Type: Adenocarcinoma
Size: 7.4 cm
Grade: G3
TNM: T3N2M1
LNs: 8/20
BL CEA: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps
PET 10/17/18: 3 pos LNs
Irino + Vecti (11/18)
CEA: 1.7 (2/19)
Xel + rad (5/19)
Surgery: 8/21/19 (aborted)
P1 Trial 10/19 - 12/19
Bypass 12/6/19
Folfox + vecti 1/2/19 - 4/3/20
Kid Fail 5/1/20
Folfiri + Avastin 5/20 - 6/20
bypass 6/29/20
Stivarga 7/18/20 -
Home 9/10/20

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ginabeewell
Posts: 565
Joined: Wed Oct 24, 2018 10:30 am

Re: RED, irritated face with Irinotecan + Vectobix

Postby ginabeewell » Sat Nov 10, 2018 12:56 pm

I've tried quite a few things, and what has worked best for me is La Mer cream ($$$$ but they gave me a free sample at Nordstrom which worked well enough that I can see myself buying more) and True Botanicals serum and oil (still spendy but less than La Mer).

I use a Keihl's wash for sensitive skin.

I literally did a "clinical trial" on my face, treating one side with one product and the other with a challenger, which is how I got to the products above. They beat out Cerave (derm reco and what I had used previously) and Kiehls creams. Now I use True Botanicals on my face and La Mer cream on my eyelids.

The tight red came before my rash, and it seems like I'm breaking out in the places I'm most dry (currently my eyelids OMG painful). So whatever he uses, have him use it liberally! Also in my case it spread to chest and back - Cerave has worked well enough in those areas to keep using.
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

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ginabeewell
Posts: 565
Joined: Wed Oct 24, 2018 10:30 am

Re: RED, irritated face with Irinotecan + Vectobix

Postby ginabeewell » Sat Nov 10, 2018 1:53 pm

Oh and my doctor prescribed Doxycycline and a steroid cream after I broke out. But we did some reading after the fact and figured out best practice is to prescribe this stuff before the rash hits, because it impacts 90% of people and can prevent a major reaction. So ask about getting that now if he hasn't already started taking these.
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

deanfromuk
Posts: 10
Joined: Fri Aug 24, 2018 1:36 pm

Re: RED, irritated face with Irinotecan + Vectobix

Postby deanfromuk » Sat Nov 10, 2018 6:05 pm

Ask for doxycycline (also supposedly it has a reasonable anti cancer effect due to targetting mitochondria) and just try natural moisurizing creams until you find one that suits him. My mom was given Pliazone cream which worked OK then she switched to a wide variety and is still settling on a favourite

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GrouseMan
Posts: 888
Joined: Mon Aug 12, 2013 12:30 pm
Location: SE Michigan USA

Re: RED, irritated face with Irinotecan + Vectobix

Postby GrouseMan » Sun Nov 11, 2018 10:43 am

This is an issue with the whole class of EGFr inhibitors. Both with the small molecule ones and the monoclonal antibodies. In the first clinical trials with Canertinib (CI-1033 one of the first EGFr inhibitors discovered) we would dose it with Benadryl, to minimize the rash. Later it was discovered that some antibiotics such as Doxycycline and Cephalexin (which my wife took for her rash from Erbitux) helps a great deal. Go see a dermatologist if your oncologist won't prescribe one of these antibiotics to ease your husbands suffering. I am actually surprised that they didn't put him on it prophylactically. Most do because its a long known side effect that is actually pretty easy to manage.

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

RulaLenska
Posts: 24
Joined: Fri May 04, 2018 8:13 pm

Re: RED, irritated face with Irinotecan + Vectobix

Postby RulaLenska » Sun Nov 11, 2018 2:03 pm

My Onc prescribed doxycycline and a 1% hydrocortisone cream 2 weeks before I even started irinotecan/vectibix. I also used sunscreen religiously because ANY amount of sun exacerbated skin issues. Pay extra attention to the cuticles...no picking, pulling, or cutting. Very painful fissures can occur at the corners of fingernails. Infections can then get in there. Sometimes this treatment has to be halted because of this. I got the crazy eyelashes and other odd hair things. Eyelashes 3/4 of an inch long and growing in every direction!
I also noticed fatigue with vectibix that I didn’t have with other treatment so I needed naps. I wish the best for your husband and you.
Cyn
Dx 8/16 IV stage with mets to lungs liver adrenals
KRAS wt MSS CEA over 400
2 x folfori caused refractory diarrhea but dropped CEA to 200
Switched to folfox stopped after 10 due to neuropathy
Avastin leucorvorin 5fu dropped after 11 due to hfs
Chemo break to travel.
Nov. 2017 emergency sleeve colectomy of primary tumor.
Vectibix irinotecan
PET scan shows no lung or adrenal tumors
5/2 Portal Vein Embolisation in preparation for liver resection.
6/12 extended right resection removing 60%.

Koreysue
Posts: 258
Joined: Mon Apr 30, 2018 2:36 pm

Re: RED, irritated face with Irinotecan + Vectobix

Postby Koreysue » Sun Nov 11, 2018 2:13 pm

I did not have experience with that combo of treatments, or the face irritation, but thought I’d offer this- my son struggles with severe excema that sometimes cracks. California Baby Calendula cream worked for that. It also worked on a burn that I had. Not sure if it will help your husband’s skin irritation but I thought I’d share.
Korey
Dx: 6/2017 stage 3 CC
Sigmoid, 2 nodes
CEA at dx: 6.1
Sigmoid Colectomy/folfox (last chemo (1/31/18)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/18 clean
PET scan 8/20/18 NED
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT NED 6/18/19 / CEA : 3.4
CEA 10/21/19: 3.2
CEA 3/9/20: 3.8
CT NED /CEA 6/17/20: 3.8
CEA 11/4/20 4.6 <——— whyyyy? (will retest in a few weeks)
CT NED 12/1/20 CEA: 3.5
CEA 5/21 4.2
CEA 10/21 3.4
colonoscopy 10/21 10mm polyp
CEA 4/22 3.7
CEA 7/22 3.8
CEA 12/22 4
CEA 1/22 3.2 and NED 5yr scan


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