Cetuximab sucks balls (the big ones)

[dudette]

Just need to get this off my chest.

Not only do I look like a burn victim but my face hurts like hell and my nail beds started bleeding. I've been sucking up the aesthetic modifications caused by various treatments without too much complaining but the side-effects of Cetuximab are pushing me over the edge. Man. It's the holidays, new years is coming up and I was so optimistic that 2017 will be awesome. But now that I look like frickin' Chucky I'm kind of losing it

Thanks for listening. Ya'll know where I'm coming from.

[Lee]

(((dudette)))

I don't have any advice, butt just to let you know I'm thinking of you,

Lee

[GrouseMan]

Are you by chance taking any kind of Antibiotic with the Cetuximab (Erbitux)? My wife has been on Irinotecan, Erbitux and Avastin now since January. She has found this to be the easiest chemo combo of the three she has been on in the last 3+ years. They have her take Cephalexin 500 mg twice a day. That and some moisturizing creams and at worse she looks like she is a little flushed from being out in the sun. Not much of a rash perhaps except the day after her infusion and even then not really all that bad. An on top of that her hair is coming back in thicker and darker than when she was on FOLFIRI plus Avastin! Its manageable. Some have used Benadryl. When I was originally working in EGFr inhibitors some of the people in the initial clinical trials were on this in combination with our small molecule EGFr inhitors which helped some quite a lot with the rash. The doctors should be able to help mediate this rash somewhat and make it less of a PITA. Though some have said the worse the rash the better its working. I don't really think that has been substantiated however.

Talk to your oncologist and if you need to get a referral to a dermatologist.

Regards,

GrouseMan

[BeansMama]

I had similar issues while on vectibix, I found the best solution was a script for doxycycline.

I refused to leave the house my skin was so bad. I hope you are able to find a solution soon.

I will send extra prayers your way.

[teri3]

Prayers that your life quits sucking big balls! Hope you find what works to cleAr it and 2017 is awesome!!
Hugs,
Teri

[dudette]

Thanks for the recommendations and kind thoughts. I really appreciate being part of this community (although I'd prefer not having to be a part of it ... but that's a different story and not optional).

[Pita]

The doctors should be able to help mediate this rash somewhat and make it less of a PITA.
Regards,
GrouseMan

Sigh... there's that PITA again


Dudette I was on chemo with Folfox and Cetuximab for about 5 weeks, had prescribed creams and antibiotics which didn't do anything for me. The rash was making me miserable, I couldn't sleep even with pill help because it burned so bad and itched at the same time and when I don't get enough sleep life is not good especially for those around me. Told Onc, I'm done with it so he took me off of it. All treatments shrunk my tumor from 10cm to 3cm so was happy about that, made surgery easier.
I was on Cephalexin (Keflex) but not sure of the dosage, if I have to go on Cetuximab again I'll suggest GrouseMan's advice to my Onc about dosage.

Good Luck, hugs and prayers to you (((Dudette))), you tolerate a lot more then I could. oxo

[Wonderfullymade]

I had similar issues while on vectibix, I found the best solution was a script for doxycycline.

I refused to leave the house my skin was so bad. I hope you are able to find a solution soon.

I will send extra prayers your way.

X2! Get the drugs for the drugs! And a steroid lotion!
Wonderfullymade

[KElizabeth]

Language warning!
I get a nasty burning itchy rash every cycle with the folfiri, but it starts at the end of the cycle. I look like a teenager with raging acne and combine that with a puffy face, no hair, eyebrows or eyelashes to make a pretty sore sight.
I have really considered making a hat to wear on errands with embroidery that reads, "Fuck off. I have cancer, and can still kick your ass if you keep staring." Maybe that's too long so it could just read, "fuck off."
Maybe too dark?

[BeansMama]

Language warning!
I get a nasty burning itchy rash every cycle with the folfiri, but it starts at the end of the cycle. I look like a teenager with raging acne and combine that with a puffy face, no hair, eyebrows or eyelashes to make a pretty sore sight.
I have really considered making a hat to wear on errands with embroidery that reads, "Fuck off. I have cancer, and can still kick your ass if you keep staring." Maybe that's too long so it could just read, "fuck off."
Maybe too dark?

I had a horrible rash when they were treating me with vectibix, I wouldn't even leave the house. It was an awful red pimply rash that hurt incredibly. We managed my rash with a clindamyacin lotion and doxycycline - 1pill per day (yay yet another pill...) does your oncologist have any ideas how to get you some relief? Because the rash would subside some before I would see my oncologist again I took pictures of it at its worst so he could see how severe it actually was.

I have considered making a sign, hubs and the girls got me a tank that says - "Stop being calm and f*ck cancer" for my birthday. I love that shirt, and my sister in law gave me a necklace for Christmas that says f*ck cancer in Morse code. Hands down my favorite Christmas gift this year. Sometimes you just need to use the f-bomb. Although I do tend to only wear the shirt when I know I am going somewhere there will not be a lot of children and I am always wearing a zip up Hoodie because I am always cold.

I really wish parents would use it as a teaching moment with their kids. I had one today openly just staring at me, the stares upset my littlest one too, sometimes she will pop off with didn't your mom teach you not to stare at people?? Or her favorite, take a picture it will last longer! I have to reprimand her for being disrespectful but dang it sometimes I want to say the same thing!

I would rather they approach me and ask questions. Of course there is much I won't tell a complete stranger but if you are that curious, ask. Although I would think the bandana and lack of hair would be a pretty big clue. I get more stares on days I need to use the motorized carts to get around the store. Which is getting more and more frequent.

I will send extra prayers your way hoping there is a solution for your rash.

[dudette]

Thanks for sharing your "funny" stories. Just what I needed today because "the face" got even worse. Woke up with puffy eyes (the left one doesn't open properly), somehow my nose doubled in size and yellow crusty stuff all over my face - and a 6 hour train ride home ahead of me.

It was the first time that I was really annoyed by people staring at me. I thought I had seen it all after being bald (twice!) but some fellow human beings still manage to surprise me.

But yep. I will not travel or basically step outside the house until it is better. I called the oncologist today and all they had for me was "well, keep using the antibiotics cream". I'm heading to their office on Friday and intend on being a pain in the ass until I get some relief

[BeansMama]

Thanks for sharing your "funny" stories. Just what I needed today because "the face" got even worse. Woke up with puffy eyes (the left one doesn't open properly), somehow my nose doubled in size and yellow crusty stuff all over my face - and a 6 hour train ride home ahead of me.

It was the first time that I was really annoyed by people staring at me. I thought I had seen it all after being bald (twice!) but some fellow human beings still manage to surprise me.

But yep. I will not travel or basically step outside the house until it is better. I called the oncologist today and all they had for me was "well, keep using the antibiotics cream". I'm heading to their office on Friday and intend on being a pain in the ass until I get some relief

Definitely be the squeaky wheel until they help! Other than that have you considered a dermatologist with experience treating cancer patients? That may be the better route to go, your oncologist may not know what to do.

[Maia]

I'm heading to their office on Friday and intend on being a pain in the ass until I get some relief

Tell me the time when you'll be doing that and I'll join in spirit!! : )
Sending you many good wished and a hug

[plastikos]

Sorry to hear that Cetuximab has been rough on you. I had it in 2015 and the rash sucked big time. In my experience it gets better over time. It wouldn't hurt to consult a dematologist as well. Hope it does the trick for you.

[dudette]

Update on my Cetuximab saga.

Went to see my oncologist yesterday. I didn't even have to be the squeaky wheel to get help - the doctor was pretty shocked when she saw me, kept apologising and said that she had never seen a reaction that bad. So she sent me over to see a dermatologist. Got some cortisone cream, some cream for my blodgy eye and the recommendation to take facial baths with black tea and vaseline (i.e. put on a very thin layer of vaseline and then put washcloths soaked in black tea on the face). What can I say. The combination seems to be working. Since my appointment yesterday I have continuously done the black tea bath followed by cortisone cream and it is getting better. The swelling is going down and the itching is not as bad as it was before, and while my eye is still bloodshot at least I can open it. Hooray!