Erbitux

longtermsurvivor
longtermsurvivor Member Posts: 1,842 Member
edited November 2011 in Head and Neck Cancer #1
Let's just say my reaction to erbitux has been "enthusiastic." After my loading dose, I had a modest rash. After two doses life was getting uncomfortable. After three doses, my face is literally peeling off. How anyone could say this rash looks like acne is a mystery to me. I look like I've been under the heat lamp for hours on end. My eyelids are bleeding.

Sheesh. Rapid doseage reductions. And oral steroids, started yesterday, have taken the fire out of the rash. But it has been pretty uncomfortable. LOL, to show you how compliant I'm trying to be, I found myself telling the oncologist, "this is tolerable..."

4 treatments down, a bunch to go. Dang I'm pretty right now, between the patchy hair loss and the B grade movie face. Good thing my wife loves me:)

Comments

  • Hondo
    Hondo Member Posts: 6,636 Member
    #2
    Beauty and the Beast

    I know the feeling just glad to see in all of this you still have your sense of humor. There are better days coming once you get passed this bump in the road.

    Take care :+})
    ╠╣ONDO
  • jtl
    jtl Member Posts: 456
    #3
    Different reaction
    I got the rash after the loading dose and it was really more like acne with pustules. Some say this is good and a sign the drug is working. It was pretty much all over my face. After a week of taking Doxycycline Mono it was gone. I took a total of 8 treatments in conjunction with radiation. That was my only side effect, my blood chemistry stayed normal.
    Regards,
    John
  • ratface
    ratface Member Posts: 1,337 Member
    #4
    jtl said:

    Different reaction
    I got the rash after the loading dose and it was really more like acne with pustules. Some say this is good and a sign the drug is working. It was pretty much all over my face. After a week of taking Doxycycline Mono it was gone. I took a total of 8 treatments in conjunction with radiation. That was my only side effect, my blood chemistry stayed normal.
    Regards,
    John

    At least it happened around halloween
    Hi LTS. I love your one foot in front of the other, take it all in stride attitude. My thoughts are with as you kick butt yet again.
  • robinleigh
    robinleigh Member Posts: 297
    #5
    Rash
    Andy got the wonderful erbitux rash too. One warning...a doc put him on antibiotics for it ( like you would for a teenager) and it wiped out his intestinal bacteria and he got a horrendous bacterial infection ( clostridium dificil). The rash is preferable to the infection!

    Robin

    P.s. Longtermsurvivor...I have been trying to reply to emails with you and I think it is not successfully sending. Tried twice since your reply and "message sent" pops up but then I never see it on the list. Sorry.
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #6
    robinleigh said:

    Rash
    Andy got the wonderful erbitux rash too. One warning...a doc put him on antibiotics for it ( like you would for a teenager) and it wiped out his intestinal bacteria and he got a horrendous bacterial infection ( clostridium dificil). The rash is preferable to the infection!

    Robin

    P.s. Longtermsurvivor...I have been trying to reply to emails with you and I think it is not successfully sending. Tried twice since your reply and "message sent" pops up but then I never see it on the list. Sorry.

    I too am having email troubles
    thought it was just me. I did get your emails last nite. Thank you. I'll try to again send you a response.

    Pat
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #7
    ratface said:

    At least it happened around halloween
    Hi LTS. I love your one foot in front of the other, take it all in stride attitude. My thoughts are with as you kick butt yet again.

    Funny you should say that
    My wife tells me I'm leading with my face:)
  • RogerRN43
    RogerRN43 Member Posts: 185
    #8
    robinleigh said:

    Rash
    Andy got the wonderful erbitux rash too. One warning...a doc put him on antibiotics for it ( like you would for a teenager) and it wiped out his intestinal bacteria and he got a horrendous bacterial infection ( clostridium dificil). The rash is preferable to the infection!

    Robin

    P.s. Longtermsurvivor...I have been trying to reply to emails with you and I think it is not successfully sending. Tried twice since your reply and "message sent" pops up but then I never see it on the list. Sorry.

    C.diff
    C diff is common in most of our guts but when it surpasses normal gut bacteria, watch out.
    Another hospital acquired C.diff is more serious. Antibiotic resistant C.diff has been at times an epidemic in our hospitals, a very dangerous bug, and it has caused some premature deaths in the elderly already sick with other health problems. New hospital cleaning strategies have brought it under control (C.diff spores can live on surfaces, I forget how long).

    Interestingly, a new treatment has been very effective for it. Fecal transplantation. They blend a family member's fecal contents (donor) and the recipient's GI system is coated with it to so that there is fresh normal bacteria, usually through a nasogastric tube. It sounds disgusting but it works.

    I don't wish C.diff on anyone. Sounds like Andy got a milder form and fought it off without needing the novel treatment.
  • Fire34
    Fire34 Member Posts: 365
    #9
    18 treatments here
    LTS
    I had 18 weeks of 250 mg doses, my rash was the worst on the right side of my chest, looked almost like shingles. It sure was hard not to scratch the darn stuff. I have a few residual scars etc. but I have never let the small stuff bother me. Is this your induction phase or are you going thru rads during this? Well keep up the good humor.
    Wishes & Prayers
    Dave
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #10
    Fire34 said:

    18 treatments here
    LTS
    I had 18 weeks of 250 mg doses, my rash was the worst on the right side of my chest, looked almost like shingles. It sure was hard not to scratch the darn stuff. I have a few residual scars etc. but I have never let the small stuff bother me. Is this your induction phase or are you going thru rads during this? Well keep up the good humor.
    Wishes & Prayers
    Dave

    Induction now
    rads start down the road a bit. I ended up with a significant doseage reduction and put on oral steroids yesterday. I don't have a rash anywhere but my face and neck. But my face looks like a fried egg. I get these big cracks in my skin that actually bleed. Nothing that really looks like acne. Quite a bit better on the steroids today. Wow, I was even having trouble sleeping with this.
  • Hondo
    Hondo Member Posts: 6,636 Member
    #11
    longtermsurvivor said:

    Induction now
    rads start down the road a bit. I ended up with a significant doseage reduction and put on oral steroids yesterday. I don't have a rash anywhere but my face and neck. But my face looks like a fried egg. I get these big cracks in my skin that actually bleed. Nothing that really looks like acne. Quite a bit better on the steroids today. Wow, I was even having trouble sleeping with this.

    Hi longterms

    Pure Aloe Vera I found works best for me on the dried skin, I even started to grow it in my back yard.Glad to hear you are doing better

    Wishing you the best
    Hondo
  • jim and i
    jim and i Member Posts: 1,788 Member
    #12
    Sorry your side effects are so bad
    As they like to say, "Everyone is different." Praying things get better and youlook good for Thanksgiving pictures.

    Debbie
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #13
    jim and i said:

    Sorry your side effects are so bad
    As they like to say, "Everyone is different." Praying things get better and youlook good for Thanksgiving pictures.

    Debbie

    Thank you...
    I'm to the "I'm beautiful on the inside" stage of my treatment right now. You know, thinking about this I remember when I woke up from my radical neck dissection years ago, trying to pick my head up off the pillow, and realizing how difficult that was going to be for a while without the sternomastoid muscle on that side. I think the first words out of my mouth were, "I'm a bobblehead," which got me some pretty strange looks in the recovery room. Oh, well, guess you had to be there to understand it.....

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