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For those of you that had Erbitux

jcortney's picture
jcortney
Posts: 426
Joined: Sep 2012

Just had my third round of Induction today and was advised that concurrent with the RADS I'm going to get Erbitux. They also told me to expect an acne type rash just about everywhere. So, to you folks that have lived through it, what am I going to need to cope with this?

I'm working really hard not to buy tomorrow's troubles today, just want to have what I need for the next step.

Thanks,

Joe

KareGiver
Posts: 291
Joined: Apr 2011

Thanks for asking this question! We were wondering the same thing as this may be an option for my husband as well...

phrannie51's picture
phrannie51
Posts: 3783
Joined: Mar 2012

but two of our most helpful posters did....Tim and Matt....I'm sure you'll be hearing from them soon...

p

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

I had 8 weekly infusions of erbitux and I can tell you that in my case I got the acne type rash on my face chest and some areas of my back and my scalp. My oncologist told me this would most likely happen so he gave me a RX for doxycycline and at the first sign of the rash I took the meds. It helped to keep the rash under control. I also had another strange side effect but being a girl, I was happy with it....my eyelashes got really long and thick.
Wish that was a long lasting side effect but sadly it's not haha
I had heard that the worse the rash is the better the meds are working. When my rash didn't get terrible like some others did I began to panic & my dr said that is a huge misconception. Everyone reacts differently so if you hear that rumor, don't put a lot of thought into it.
Good luck to you and ask us if you have any more questions.
Billie

Fire34
Posts: 352
Joined: Feb 2010

Joe
I had 18 weeks of Erbitux. 8 weeks induction, 5 weeks concurrent with Rads an 5 weeks of maintenance. I was in a clinical trial at U of Chicago. Along with 5FU, taxol & hydroxyurea
Dont mean to scare you like Billie said we all react differently, my rash got alsmost like shingles on the right side of my chest, then of course the ususal acne all over the rest of me. The worst part was to not scratch the darn things. I forget the names of the antibiotics I was given, Sorry. Wishes & Prayers
Dave

CivilMatt's picture
CivilMatt
Posts: 3012
Joined: May 2012

Hi Joe,

I had Erbitux also. 1 loading dose and 7 regular doses (every Friday after rads). I got nice acne over entire torso and face. These babies were ready for popping, if I so desired. Everyone that saw my chest, stomach, back and arms asked if it itched, but it never did. My face was covered, but never like a bad teenage case, just whitehead pimples. It was never embarrassingly bad, not at all. Like Billie, my eyelashes grew so long it bugged me while driving, my eyebrows got thicker and my PEG incision got hairy. Today, the long hair is over with, my face is clear and I have a freckling appearance on my sides, back and a little on chest and arms. To see a deluxe case of Erbitux go to Tim’s expressions page and see his picture.

I also got a very bad neck burn during weeks 6, 7 & 8. It was the worst pain of my entire treatment. I always wondered if the Erbitux contributed to this or was it all because of the rads? Regardless, Silver Sulfdiazine Cream came to the rescue and took all the pain away; a bit messy, but fantastic stuff.

Best,

Matt

Almost forgot, I have been losing a big toenail for months (it is almost ready to exit my toe)

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

No side effects from Erbitux at all. However, my first post treatment PET showed stuff in my lungs. Most probably lung cancer. So maybe the Erbitux rash would have been a good thing. Just add this to your information. Rick.

longtermsurvivor's picture
longtermsurvivor
Posts: 1820
Joined: Mar 2010

You can read about my adventure in my bio. Not life threatening, but pretty uncomfortable. OTOH, I had miraculous tumor regression while on the drug.

Best

Pat

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

like others, I had 1 loading dose and 7 regular doses.
the rash on forehead, nose, and torso was ugly ugly, but otherwise not a huge thing for me. your doc may give you some sort of steroid cream. it went away completely and fairly quickly.

the worst effect for moi was fingernail inflammation and infections.
the nails of both my middle fingers got pretty gruesome. started out as puffiness around the nail and little cracks in the skin... at first I thought it was dry skin, because it was two weeks after treatment ended and erbitux has a fairly short half-life. then wham--full-on infections.
took a boatload of antibiotics and more than a month to clear up. learned to do everything with three fingers and a thumb.

jtl's picture
jtl
Posts: 420
Joined: Sep 2011

Like others have said expect some kind of acne. Mine pretty much covered my face for a couple of weeks from about week two. It didn't itch except when I had to put the rad mask on. I just blocked it out of my mind, kinda like if you are using both hands to carry something and your nose starts to itch. Another side effect can be ingrown toe nails. The advice that I was given was to not cut the nails too short especially on the sides because they tend to curl inward. For most it is a very tolerable drug. Here is some good info but you will need to copy and paste into your browser.

http://www.merckserono.com/corp.merckserono_2011/en/images/20101011_onco_900_tcm1494_59857.pdf?Version=

Good Luck with your treatments.
John

jcortney's picture
jcortney
Posts: 426
Joined: Sep 2012

Thanks. Makes taking this crap worth it.

Joe

Hard12Find
Posts: 208
Joined: Sep 2012

Only one round of erbitux, but did break out in the acne like rash, had blackheads along my nose etc....kind of itched, used the cream they provided (clindamycin gel). I have the better part of an unused tube if I can be of assistance PM me your address and it will magigally appear....
Jim

Steve1958's picture
Steve1958
Posts: 8
Joined: Oct 2012

I'm in my last week of treatment for tonsillar cancer with a neck mass (they removed my right tonsil before starting treatment), completing rad #32 of 35 today. I was given a large loading dose of Erbitux (also called Cetuximab) and then was to receive once a week follow up doses. The idea is that it enhances the radiation, not administered as chemotherapy on its own. Everything I read said that about 85% of people will react with some level of acneiform rash (looks like acne but is not acne) starting in about 7 to 14 days. Well, I started bursting out 2 days later, starting on my forehead, moving to the top of my head, and over the weeks moving down to my cheeks, nose, and entire upper chest and back. After about a week they prescribed doxycycline twice a day, which didn't stop the rash, but helped keep the acne like pustules in check a bit. I had such a powerful reaction that they agreed to skip several doses of the Erbitux, but we did resume at a slightly lower dose the last two weeks. I'll be honest - I dreaded getting the additional doses, knowing the potential for additional nasty rash, but so far any additional breakout has been very minimal and mostly limited to very sensitive and blotchy skin. I still have it all over my upper chest, but it never left that area. I also have a big nasty spot of it on my right neck, right over where my tumor is and where I get radiated every day. Interestingly, my left neck, which is not radiated, is perfectly clear. I'm guessing that, because my skin is burnt on the right, it probably won't really start healing there until my skin starts healing after treatment ends, which is in 3 more days. You have no idea how happy I am that this coming to an end.

The bottom line of the Erbitux rash is that it is critical to take very good care of your skin. I take about an hour in the shower each morning, with the water on barely a trickle because the direct spray hurts the tender affected skin. I use a neutral ph skin cleanser (I use Seba Med skin cleanser in a pump bottle from CVS - I'm sure there also are many other good cleansers). I do small sections of my face at a time and then rinse. Yes, it's a total pain, but when you look at the big picture, it's a temporary inconvenience, and I know there are those who have it so much worse than I do.

I do also have some red and swelling cuticles around a couple of the nails on my hands. I just carry Neosporin with me and keep them coated to prevent infection. I apologize for such a graphic description of my experience. My doctors say my response is worse than most, and you can see by the other posters' responses to your question that everyone reacts differently. Remember, just take one day at a time and this too will pass.

luv4lacrosse's picture
luv4lacrosse
Posts: 1399
Joined: Jul 2010

Make sure you doc puts you on Minocyclene twice a day to help dry the skin. I have more acne at 48 than I ever did as a teenager. Also do not pick ay your nails as they can be prone to getting infected.

Good Luck

yensid683
Posts: 236
Joined: Apr 2012

I had 8 doses of erbitux over the course of my rads, and I had the typical reactions, the acne that was well treated with the topical antibiotic, and the hair growth issue. I swear I looked like an ape that had escaped from the zoo.

Infusion would give me two tylenol for discomfort and a benedryl and it would make me sleep for most of the infusion process, but it was not all that bad. The acne like rash can feel embarrassing, but in the great scheme of things, it was better than letting the beast have any advantage.

My doctor also had me pay close attention to nail care, keep them clean, trimmed and be very careful not to 'injure' the nail beds. I'd make sure I used hand sanitizer and did good hand washing and fortunately had no problems.

Now if I could just get my eyebrows to stop looking like caterpillars and eye lashes to stop getting tangled together, I'd be happy

jcortney's picture
jcortney
Posts: 426
Joined: Sep 2012

What kind of creams did all of you find worked best? Anything I should request from the doc by prescription?

Thanks in advance for your suggestions.

Joe

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

if you get any puffiness, redness, nicks, or cracks in skin near nails, use neosporin or other OTC topical antibiotic goo. chances are, it's not dry skin or ordinary nick, but erbitux effect.

Jametz426
Posts: 3
Joined: Nov 2012

I have had treatments since march. My rash started out covering head,face chest and back. Now it is on back and chest. It is not much on head and face now
Ck

Jametz426
Posts: 3
Joined: Nov 2012

I have had treatments since march. My rash started out covering head,face chest and back. Now it is on back and chest. It is not much on head and face now
Ck

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