Facial Rash from Irinotecan & Cetuximab

Dru L
Dru L Member Posts: 1
in Colorectal Cancer #1

I just started treatment for CRC with Irinotecan & Cetuximab. I have broken out in the most horrible rash all over my face. I can't believe my doctor would put me through this. Not only is it hideous, it's painful. It's definitely affecting my QOL ...I can't leave the house. Have others experienced this?  How long does it last?  With additional treatments does it continue?  Any tips are appreciated because as of right now, I will not continue this route. 

Comments

  • Steve444
    Steve444 Member Posts: 105 Member
    #2
    So sorry

    I read the data sheets when my doc suggested it to me and saw the pictures of facial rashes and nail bed redness.  I opted not to as I didn't want to deal with it, especially since I have very sensitive skin, you are supposed to stay out of the sun and I recall someone in my chemo room who was in so much pain with the rash and hid in the corner.  I am sorry you are having to deal with the rash and am doubly sorry that it's so painful.  I told my wife that I'm sorry, but I'm not doing that.  I am opting for SIRT instead in June.

  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #3
    Facial Rash

    Your facial rash isn't from the Irinotecan but from the Cetuximab.  I am currently on a Irinotecan (known as " I Run To The Can" due to diarhea), and Cetuximab (aka Erbitux).

    For the terrible rash my Oncologist just prescribed an antibiotic called "sulfamethoxazole-TMP DS T AMNEA", which has been working well for me as it is already drying out, I take one a day every other day for three days.

    As for the side effects of chemo, they aren't nice or necessarily pleasant, but if it saves your life, it is to me worth it.  Before trying antibiotics (last time I was on same chemo) I wore big floppy hats, and other times I wore a t-shirt I had made that had an arrow pointing up to my face that read "it's a chemo side effect, all's good".

    I just starts the antibiotics this week and it is already starting to clear up my face, now if I just wasn't going bald at the same time all would be well.

    Putting lotion or Vaseline will stop the pain of the rash and the cracking, and try the antibiotics before giving up. Vanity during cancer is next to impossible, although I do try to make myself look good, it makes me feel so much better.

    Hang in there!

    Winter Marie

     

  • Steve444
    Steve444 Member Posts: 105 Member
    #4
    Steve444 said:

    So sorry

    I read the data sheets when my doc suggested it to me and saw the pictures of facial rashes and nail bed redness.  I opted not to as I didn't want to deal with it, especially since I have very sensitive skin, you are supposed to stay out of the sun and I recall someone in my chemo room who was in so much pain with the rash and hid in the corner.  I am sorry you are having to deal with the rash and am doubly sorry that it's so painful.  I told my wife that I'm sorry, but I'm not doing that.  I am opting for SIRT instead in June.

    Apologies

    Sorry if my reply was insensitive to those on this cocktail.  I just recalled how opposed to it I was, without really thinking about those who were on and suffering through it.  We do what we need to in order to survive.

  • UncleBuddy
    UncleBuddy Member Posts: 1,019 Member
    #5
    Erbitux

    My brother had the rash from the erbitux. Antibiotics and topical creme cleared it up pretty quickly. He's no longer on the erbitux, just the irinotecan. Since they lowered his dose, the diarreah has gone away. So far his tumors are stable, not growing at this point.

    Lin

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #6
    Our Phil

    I know our Phil has been suffering from this as well. I think he said that when he stopped the med. the rash abated. So I guess patience is needed. I'm sure you all won't get on the cover of Vouge, but the chemo works, then the rash will be worth it. 

    And welcome to the forum. Be sure and post again. 

    Trubrit

  • traci43
    traci43 Member Posts: 773 Member
    #7
    Sorry you're dealing with that!

    Hopefully everyone's comments will help you to deal with the side effects.  I've not had Eributex, as I'm KRAS positive, so I don't know how to deal with it.  It sucks that we have to deal with these side effects (I still have some neuropathy 6 years later), but if it kills those suckers, it's worth it.  I hope you find some relief and fast.  Traci

  • Phil64
    Phil64 Member Posts: 838 Member
    #8
    Dru L,
    So sorry you have this

    Dru L,

    So sorry you have this rash.  Erbitux acne is a nasty side effect for sure. I remember when I first got the rash (Febuary 2013) and I didn't want to leave the house. I didn't want to go into public with this rash all over my face. However, the Erbitux proved to be a very powerful force against my cancer as well. I went from inoperatble to having an operation. And as of December 2014 I'm NED.  My doctor felt strongly that one year of Erbitux (following my last surgery) is my best bet to keep the cancer away and I have to agree with him. Out of all the chemo I received Erbitux seemed to have the strongest impact against the cancer. And so, here I am, once again living with the nasty rash.

    However, I KNOW that the rash is not permanent. And I know that I can this nasty rash knowing it is doing a number against the cancer cells.

    I also have come to terms with being seen in public.  I simply explain to whoever seems curious, that this is a rash from a cancer treatment. I even struck up a conversation with a gentleman at the grocery store as he flat out approached me about it. 

    I have also blogged about the rash. I even wrote a rap poem too.

    A couple of my posts dealing with Erbitux are below:

    http://pscamihorn.me/2013/02/14/valentines-day-02142013/ (talks about getting the rash for the first time)

    http://pscamihorn.me/2013/02/16/good-news-update-02162013/ (talks about the rash beginning to lessen)

    http://pscamihorn.me/2013/06/  (my rap Poem on Erbitux. This will surely make you smile. :-)

     

    I hope that you find the Erbitux drug super mighty against the cancer and that you will find peace in dealing with the side-effects as well.

     

    A couple of notes: I've tried a lot of other stuff (taking antibiotics, topical steroid cream, tea oil, head and shoulders shampoo) and this stuff simply doesn't seem like it does anything. HOWEVER. I think the best treatment against the rash is to keep it covered in mosturizer. I lather up thck at bedtime and I can definitely tell the difference in the morning.

     

    Good luck!

    Phil

     

     

     

     

  • LindaK.
    LindaK. Member Posts: 506 Member
    #9
    Senior Citizen Acne

    That's what my husband called it.  He had the rash on his face and chest last summer. He used the steroid cream several times a day which did seem to help but not remove the pimples, redness and swelling.  He mostly wore a hat the last 6 months of his life.  Mistakenly, somone at the oncologist's office told him that if the rash appears, it means the drug is working.  In his case, that was not true.  He was an odd duck, his CEA actually dropped to 1 while in the totally inept hospital for 7 days while a tumor was growing in his small intestines.  They were treating him for constipation, even with colon cancer surgery 13 months prior.  By the time the surgeon finally went in, he said  he was lucky his intestines hadn't burst.  Stupid residents would take a ridiculous x-ray once a day to see if "constipation" was moving.  I have a lot of anger at that hospital and all its staff, including our GP, surgeon and former oncologist. I wonder if any of them knew what they were doing. 

  • Redeemed
    Redeemed Member Posts: 3
    #10
    Rash

    I have gotten the rash real bad as well, face, chest, back.  I have found that witch hazel seems to help with the facial rash.  I ignore the others as best I can.

    Sometimes I have my wife put moisturizer where I can't reach.  Erbitux does seem to work real well if you don't have the mutation.  I would stick with it 

    if it is working.  My large tumours have shrunk by 50% over four rounds so its working for me.

     

    Steve

  • danker
    danker Member Posts: 1,276 Member
    #11
    herdizziness said:

    Facial Rash

    Your facial rash isn't from the Irinotecan but from the Cetuximab.  I am currently on a Irinotecan (known as " I Run To The Can" due to diarhea), and Cetuximab (aka Erbitux).

    For the terrible rash my Oncologist just prescribed an antibiotic called "sulfamethoxazole-TMP DS T AMNEA", which has been working well for me as it is already drying out, I take one a day every other day for three days.

    As for the side effects of chemo, they aren't nice or necessarily pleasant, but if it saves your life, it is to me worth it.  Before trying antibiotics (last time I was on same chemo) I wore big floppy hats, and other times I wore a t-shirt I had made that had an arrow pointing up to my face that read "it's a chemo side effect, all's good".

    I just starts the antibiotics this week and it is already starting to clear up my face, now if I just wasn't going bald at the same time all would be well.

    Putting lotion or Vaseline will stop the pain of the rash and the cracking, and try the antibiotics before giving up. Vanity during cancer is next to impossible, although I do try to make myself look good, it makes me feel so much better.

    Hang in there!

    Winter Marie

     

    Hair loss

    Don't forget, bald is beautiful!!!  Not only vanity,but modesty is also impossible. LOL

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #12
    My husband has the full blown

    My husband has the full blown rash.  Been using a script gel for 3 days and it doesn't seem to help.  The doc is calling in an antibiotic today.  Wondering about lotions, coconut oil, etc - it it would make it better or worse.  

     

    Anyone have luck with any specific lotions?  He has been buying a natural lotion from a lady at work that makes them.  Seems like something oily like that or coconut oil would make it worse, but ???

     

    Good news is CEA is 102 today - down from 303 2 weeks ago.

  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #13
    jen2012 said:

    My husband has the full blown

    My husband has the full blown rash.  Been using a script gel for 3 days and it doesn't seem to help.  The doc is calling in an antibiotic today.  Wondering about lotions, coconut oil, etc - it it would make it better or worse.  

     

    Anyone have luck with any specific lotions?  He has been buying a natural lotion from a lady at work that makes them.  Seems like something oily like that or coconut oil would make it worse, but ???

     

    Good news is CEA is 102 today - down from 303 2 weeks ago.

    Creams

    I also got prescriptions for creams, I cannot testify to effectiveness as I haven't had to use them, the first one to ask onc about is "clindamycin 1%" (I'm assuming this was gel prescribed already for him) which is a real thin kind of gel that you spread a thin layer over face and the second one is just "hydrocortisone cream USP 2.5%", which you are just supposed to dot on worst pieces of the rash.

    Wishing him the best on finding something, it can be so annoying and bad to look at yourself, I looked at some past pictures where I thought it hadn't looked too bad to me then, but looking at the pics, I'm like OMGosh, I went out like that? I'm guessing I'd rather have thought it was decent looking so I wouldn't feel too bad in public.   But this chemo is working so well for me now, it worth it.  Shame men don't have big floppy hats to wear, except maybe a cowboy hat? I so hate the side affects and what it does to us.

    And WOW on the CEA drop, just wonderful!!!!

    Winter Marie

  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #14
    I had the rash

    I was on that combo for many years (6-7?) and it started out really bad but over time it got better. I did find that most people hardly noticed how hideous I thought I was. I was waiting for someone to tell me "not to do anything rash" so I could punk-slap them Wink . People I worked with were ok and even in stores people really hardly look at others. I did have one funny (IMO) experience where I stopped to get lemonade from some kids who were selling it on the side of the road (I always try to stop for it because I remember being a kid...) and one of the kids jaw dropped and he bolted for the house. They other 2 were strictly business and gladly took my $0.75

    What I did to try to lessen the uncomfortableness was to use fragrance-free products whenever I could. I really had to watch the sun and the heat. I survived and my tumors shrunk. Results were more important to me than how I looked. The last year or two of that treatment it was more redness than acne.

    Hang in there...it will lessen and maybe even pass

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