Folfiri + Erbitux

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PaulC
Posts: 32
Joined: Mon Jun 16, 2014 2:58 pm
Facebook Username: paul.campbell

Folfiri + Erbitux

Postby PaulC » Wed Jun 29, 2016 2:07 pm

Hello everyone,

I have to confess that I am not much of a "poster" on the board but I do log on from time to time, mostly to discover new information.

As mi signature attests, I am a Stage IV, chemo-for-life person. Tumors in my liver (2 to be exact), 1/2 dozen or so lymph nodes and a couple ares in the luns.

However, all of the chemo I've had works for me. Started off on Folfox, did 12 infusions and everything was stable. Started Folfiri and the Erbitux in December. Again, everything is stable, no progression and some shrinkage also.

But, the effect of the Erbitux on my skin, well, that's another deal altogether. Rash on my arms, chest, legs, but, worst of all; ON MY SCALP. Feels like giant, encrusted scabs that itch, bleed sometimes are generally bad, bad, bad.

I'm seeing a dermatologist (I get my treatment at U of Pennsylvania, a great place by the way, if you live in the Philadelphia area and are not happy with your current provider, check with them for a 2nd opinion.) and have been given various lotions and potions with varying degrees of effectiveness.

Anybody have experience with scalp scabs? I gotta say, if it weren't for the scalp problems, I'd say I feel great. It's been 2 1/2 years now since I was first diagnosed. the cancer isn't killing me, the chemo is!

Thanks in advance for any help/advice anyone can give.
StageIV CC dx 1/14, TXNXM1b
Mets to liver/lymph nodes chest/pelvis
FOLFOX 2/14, finished after 12 cycles in 8/14.
6/24 scan, shrinkage, no new involvement
4/27/15 scan, no new involvement, shrinkage in liver mets, slight growth to lung met
5FU + Avastin summer 2015.
FOLFIRI started on 9/23/15
Folfiri + Erbitux started on 12/3

Pita
Posts: 637
Joined: Wed Feb 10, 2016 3:48 pm
Location: So Calif

Re: Folfiri + Erbitux

Postby Pita » Wed Jun 29, 2016 3:19 pm

Hi Paul
I had 3 sessions of erbitux and had to stop it because it was disrupting my sleep and I was so miserable I was ready to give up on all treatments.
Scalp, face, neck and chest were affected, was put on antibiotics and the prescription cremes that burned so I wouldn't use them. OTC Cortisone 10 seemed to work the best but didn't last all night. If I knew then what I know now I would have tried cannibus to sleep.
First thing I would do is go buy some organic hair products, goat soap is very gentle to wash with and organic lotion. Most of the regular shampoos and conditioners have toxins in them. Then try the Cortisone and rub it on your head.
BTW I assume you know that the worse the rash is means it's working good!

Good luck to you (((Paul)))
70yo Fem DX: 1/21/2016 RC Stage IV-Nodules lungs
MSS-Kras Wild-Lynch Synd Neg-Lung Biopsy 1/27/16-Port 2/19/16
MRI 7/7/16 Endometrial polyp found, watching LAR 7/19/16, No Ileostomy, Stage ypT3 N1
CT 11/7/16: Most mets stable,1 shrunk,1 new??
CEA Tests: 1/21/16=20, 12/22/16=5.3, 1/20/17=4.8, 2/15/17=6.2
9/20/16-1/24/17 Folfuri & Avastin
#10/10 Done
PET/CT 2/10/16-1/31/17=Some shrunk & growth to 2, Avastin failing ??? :evil:
2/21/17 Folfuri & Avastin

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

Re: Folfiri + Erbitux

Postby GrouseMan » Wed Jun 29, 2016 4:33 pm

My wife is on a trial using Irrinotecan, Erbitux, and Avastin (likely) or Placebo. The rash she has was only on her face and neck, and the cream they gave her helped some, but then they put her on an antibiotic Cephalexin 500mg twice a day. That has helped a lot and she only really gets a mild break out the day following the infusion. This treatment has been really easy on her and seems to be affecting her peri mets. At least they appear stable so far and CEA is declining again. So far in the last three years she has tolerated what every they have given her really well. Only sustained side effect really that gets her down is fatigue! The rash now doesn't seem to faze her. Mild nausea with Folfiri and Avastin didn't slow her down, and FolFox and Avastin she also tolerated very well. She has been on chemo really without a break now for nearly three years.

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

User avatar
H is for Hawk
Posts: 103
Joined: Wed May 20, 2015 4:51 pm
Location: eastern Pennsylvania

Re: Folfiri + Erbitux

Postby H is for Hawk » Thu Jun 30, 2016 11:05 am

I was prescribed ammonium lactate 12 per cent cream for crusted scalp lesions from a MSK dermatologist. This is a humactant that attracts water from the surrounding air, so the head will feel wet during use. The scalp lesions fell off after two days and I highly recommend this approach. You might want to cut off your hair, as this makes using scalp topicals much easier.
H is for Hawk (57)
10/14 L. hemi-colectomy 3 x 4 x 1 cm tumor, 13/14 lymph nodes pos. pT4a N2B M0 stage 3 MSS
11/14 - 4/15 12x FOLFOX
5/15 PET scan: 2.5 x 1.5 cm l. colon lesion, peri surface lesion SUV 2.4, adenocar., KRAS wd, BRAF V600E mut
6/15 HIPEC
9/15 Pleural lining & liver mets, CA 19-9: 6000
10/15 Vectibix Tafinlar Mekinist
11/15 1500
1/16 200
2/16 100, add Lentinan
3/16 122
6/16 4500
7/16 20,000, CT scan - three new liver mets
8/16 6700, FOLFIRI
9/16 4900, CT scan - two new liver mets
10/16 2255 vinorelbine

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BrownBagger
Posts: 7954
Joined: Fri Jul 24, 2009 2:56 pm
Location: Central NYS

Re: Folfiri + Erbitux

Postby BrownBagger » Thu Jun 30, 2016 12:39 pm

I take minocycline on my chemo "off" weeks and it keeps the rash at bay. If I take antibiotics within a few days of a chemo infusion, I generally puke them back up. I've also used a topical gel, clindomycyn (sp), which needs a script. It helped. I've also had luck, mostly in the winter, by keeping my skin moist with Aleve Baby Eczema cream. I've been on Erbitux for probably 3 years, and I must say that skin issues come and go, and usually in a different form--from boils to intense itching to rash to whatever.
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.


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