How do you manage the side effects associated with Erbitux?

JONinAPPLEVALLEY
JONinAPPLEVALLEY Member Posts: 17
edited March 2014 in Colorectal Cancer #1
I just had an RFA procedure peformed to treat a 1cm spot on the right lobe of my liver. Consequently, I will be starting on Erbitux and Irinotecan the week after next. Does anyone have any feedback on what I can present to my doctor in our efforts to be proactive in mitigating some of the negative side effects? Any best practices that you might be able to share would be greatly appreciated!

Comments

  • lisa42
    lisa42 Member Posts: 3,625 Member
    #2
    HI Jon,
    Just so you're
    HI Jon,

    Just so you're aware, this topic was also addressed on 4/3. If you scroll down to it "Advise on Erbitux Chimotherapy", there are a few posts that can give you some information.
    Best wishes to you-
    Lisa
  • kimby
    kimby Member Posts: 797
    #3
    Erbitux
    You will want to start on the prescription ointment before the onset of the rash. Ask your onc for it as studies have shown that starting the day of your first dose lessens the effects. Interestingly, what worked best for me was Head & Shoulders shampoo. I used it as a facial wash and a body wash.(something about the zinc in it) For the dryness, AquaPhor was hands down the best thing I found.

    HTH,

    Kimby
  • pamalama
    pamalama Member Posts: 27
    #4
    Get ahead of the curve
    Jon,
    My husband has completed 10 of 24 weekly erbitux for stage3b he's in a trial and has also had 5 folfox next 7 treatments will be with 5fu and leuvorcan only due to severe reaction to oxi. Anyway first of all make sure they start you on prophalactic antibiotic therapy minocycline is what he takes 2x per day 100mg. He didn't start the antibiotics til week 2 and the rash got pretty bad and painful but started to subside by week 4. He also found that neosporin with pain relief cream not ointment helped the rash as well as well as vigilant sunscreen use since between the erbitux and the other chemo and the antibiotics all make you sun sensitive. Best of luck with your treatment.
    Pam
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #5
    irinotecan
    Hi again Jon,

    I didn't comment on the Erbitux because I referred you to the other thread that already was discussing it. Just want to echo on this one, though, definitely ask your Dr. to put you on the antibiotic before starting it. I've read that the recent studies advise to do that- prevent the reaction rather than having to try to deal with it afterward. Once on the antibiotics myself, the horrid acne from it cleared up but, 6 months after going off it, I still have some dark and some reddish spots all over my face and jawbone from it. I put makeup on it everyday to cover it up- don't know if you'd want to do that as a guy. The acne/rash part of it did go away but, I wonder if these marks I still have ever will leave- my skin was so nice and clear before- never had bad acne as a teen- now I look like someone who had a bad case of acne in the past. If you can prevent that by taking the oral antibiotic minocycline ahead of time, it'd be a good thing!

    Also- you mentioned irinotecan... I've also taken that for the past 7 months. Your hair can thin on it- mine did a bit at first, but then it didn't seem to affect my hair anymore after the first couple of months, but everyone's different with that. It did cause bowel upset. They give you something at the time of infusion to prevent diarhea. It worked & I'd be constipated for a couple of days. Then on about day 3... watch out- I'd have to spend much of the day in the bathroom for a couple of days. Immodium helped control it & did the job for me, but some people I've heard of have to get something prescription strength for it. Another weird reaction I've not heard anyone else mention- for 1-2 days after getting it, I'd get sneezing fits- weird. It does also make you ultra sensitive to the sun- especially the couple of days after getting it. ERbitux and irinotecan combined will make you even more sun sensitive- stay out of the sun and use a sunscreen. With the erbitux, your skin will be extra sensitive (or at least mine was) to certain lotions and sunscreens. I couldn't use any that had scent in them.

    Beware of all that & hopefully it won't be bad for you.
    Best wishes and God bless-
    Lisa
  • impactzone
    impactzone Member Posts: 555 Member
    #6
    Good advice so far. Both
    Good advice so far. Both oral and topical antibiotics were needed for me. Also they lengthened the infusion time.
    Chip
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #7
    Erbitux
    I can't say much more that hasn't been said. Everyone reacts differently. Some get the rash REAL bad, others don't. Mine was bad at first but after taking anti-biotics it helped. As far as the hands, there is something called "Bag Balm" that works good too. I did find that the hands/skin does what it wants when it wants. I've been on Erbitux for over 3 years and it works great on cancer, not great on skin.
    What do you prefer?
    Good luck
    -phil
  • vilma80
    vilma80 Member Posts: 22
    #8
    PhillieG said:

    Erbitux
    I can't say much more that hasn't been said. Everyone reacts differently. Some get the rash REAL bad, others don't. Mine was bad at first but after taking anti-biotics it helped. As far as the hands, there is something called "Bag Balm" that works good too. I did find that the hands/skin does what it wants when it wants. I've been on Erbitux for over 3 years and it works great on cancer, not great on skin.
    What do you prefer?
    Good luck
    -phil

    Thanks!
    Thanks a lot for all your erbutix answer.Hubby is suppost to start his treatment some times
    next week.Erbutix and irinotecan,doctor said that his wite blod count will be a little low and also rush.As we see the onc.today i will advise him for the minicycline prior to the treatment.....ALL YOUR PRAYERS ARE NEEDED.

    Phill...you answers wore great.....it really helped hubby a lot,as he feels really worrid,on the stage of the cancer.
    hugs.and thanks
    God bless all of your...
    Vilma &Elvis.
  • JONinAPPLEVALLEY
    JONinAPPLEVALLEY Member Posts: 17
    #9
    I really appreciate all of the fantastic responses!
    Thank you for taking the time to reply to my post. I am definitely going to be proactive with starting on the antibiotics ASAP. Again, thank for all of the wonderful support!
  • JONinAPPLEVALLEY
    JONinAPPLEVALLEY Member Posts: 17
    #10
    JONinAPPLEVALLEY said:

    I really appreciate all of the fantastic responses!
    Thank you for taking the time to reply to my post. I am definitely going to be proactive with starting on the antibiotics ASAP. Again, thank for all of the wonderful support!

    An issue relating to the distribution of the antibiotics...
    My doctor's nurse will not prescribe any antibiotics until after see the Erbitux rash. Since I have already been tested for the mutation (it came back wild and not mutant), I am hoping that my body will respond well. That said, I have heard that it is better to be proactive with the antibiotics. Has anyone else seen any research on this? I need to have a strong supporting argument if I want to convince my doctor to approach this any differently.
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #11
    JONinAPPLEVALLEY said:

    An issue relating to the distribution of the antibiotics...
    My doctor's nurse will not prescribe any antibiotics until after see the Erbitux rash. Since I have already been tested for the mutation (it came back wild and not mutant), I am hoping that my body will respond well. That said, I have heard that it is better to be proactive with the antibiotics. Has anyone else seen any research on this? I need to have a strong supporting argument if I want to convince my doctor to approach this any differently.

    Erbitux Rash and other side effects
    I would follow their advice. Everyone is different. I had dental work done today and my dentist and I were talking about how he can do the exact same procedure on 100 different people and wind up with maybe 3-5 groups that the people fall in to. Some have sensitive teeth, others get infections, and others get something else. You never really know the outcome until you have the experience. So there could be a problem if you are given the anti-biotic beforehand because you may be in a special group that might have some wacky reaction. I'm not saying there is one, but let them make the call. It's not going to make a huge difference. The rash seems to run certain cycles anyway. There were times in the beginning where I had the rash pretty good. If you were a little far away, it mostly looked like a wicked sunburn, but if you got up closer you could see the whiteheads. After a while though (months...) they really lessen and it may last only a few days. I go every other week so by the end of the first week all usually looks much better. Then by the second week it's better still. One good thing is that if you stop, you get back to normal quickly.
    OK, for an example. The photo on the left was taken in August of 2005, a few months (3-4?) into the Erbitux. The shot on the right was last summer after being off it for about 5 weeks right before my last operation. The skin really clears up fast.
    image

    I can not for the life of me figure out why NONE of my friends ever said "Don't do anything Rash". I would have said it to me! Most people really don't seem to care or at least it's not like being the Elephant Man or something. The good thing is, YOU don't have to look at it, other people have to look it. With my long winded post (I was feeling nauseous so I took something for it) that is about it. I would say "trust your doctors". You will know within 2 - 3 treatments if you'll need to deal with the rash and your body can build up tolerances to anti-biotics too.

    The very best to you.
    Keep us posted if you can
    -phil

    UPDATE: I also had this weird thing with my eyelashes growing really long. Sometimes they turn around and would poke me in the eye and I'd have to pluck them. It's not uncommon I was told. Also, I had a small ulcer type thing on one of my toes, the Big toe (the captain of the team) that caused a lot of trouble. It got into a cycle where the dermatologist would fix it, then it would happen again in a few weeks. That lasted a while. I could not wear shoes, I had to go with sandals. It sucked in the winter. I have a minor one on a different toe now that is holding steady. There are also issues with split finger tips, like paper cuts in a way. For ME, it seems like it goes from the inside out so topical remedies didn't help as much as I would have liked. Those were MY experiences, you may or may not have similar ones. The rash is pretty standard though and I heard if you have the rash, it's a good sign that it is working.
  • JONinAPPLEVALLEY
    JONinAPPLEVALLEY Member Posts: 17
    #12
    PhillieG said:

    Erbitux Rash and other side effects
    I would follow their advice. Everyone is different. I had dental work done today and my dentist and I were talking about how he can do the exact same procedure on 100 different people and wind up with maybe 3-5 groups that the people fall in to. Some have sensitive teeth, others get infections, and others get something else. You never really know the outcome until you have the experience. So there could be a problem if you are given the anti-biotic beforehand because you may be in a special group that might have some wacky reaction. I'm not saying there is one, but let them make the call. It's not going to make a huge difference. The rash seems to run certain cycles anyway. There were times in the beginning where I had the rash pretty good. If you were a little far away, it mostly looked like a wicked sunburn, but if you got up closer you could see the whiteheads. After a while though (months...) they really lessen and it may last only a few days. I go every other week so by the end of the first week all usually looks much better. Then by the second week it's better still. One good thing is that if you stop, you get back to normal quickly.
    OK, for an example. The photo on the left was taken in August of 2005, a few months (3-4?) into the Erbitux. The shot on the right was last summer after being off it for about 5 weeks right before my last operation. The skin really clears up fast.
    image

    I can not for the life of me figure out why NONE of my friends ever said "Don't do anything Rash". I would have said it to me! Most people really don't seem to care or at least it's not like being the Elephant Man or something. The good thing is, YOU don't have to look at it, other people have to look it. With my long winded post (I was feeling nauseous so I took something for it) that is about it. I would say "trust your doctors". You will know within 2 - 3 treatments if you'll need to deal with the rash and your body can build up tolerances to anti-biotics too.

    The very best to you.
    Keep us posted if you can
    -phil

    UPDATE: I also had this weird thing with my eyelashes growing really long. Sometimes they turn around and would poke me in the eye and I'd have to pluck them. It's not uncommon I was told. Also, I had a small ulcer type thing on one of my toes, the Big toe (the captain of the team) that caused a lot of trouble. It got into a cycle where the dermatologist would fix it, then it would happen again in a few weeks. That lasted a while. I could not wear shoes, I had to go with sandals. It sucked in the winter. I have a minor one on a different toe now that is holding steady. There are also issues with split finger tips, like paper cuts in a way. For ME, it seems like it goes from the inside out so topical remedies didn't help as much as I would have liked. Those were MY experiences, you may or may not have similar ones. The rash is pretty standard though and I heard if you have the rash, it's a good sign that it is working.

    When did everyone first see signs of the rash?
    Hi everyone. I just started my weekly Erbitux treatments yesterday. On average, how long did it take for you to show any signs of the rash? In appreciation, Jon
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #13
    JONinAPPLEVALLEY said:

    When did everyone first see signs of the rash?
    Hi everyone. I just started my weekly Erbitux treatments yesterday. On average, how long did it take for you to show any signs of the rash? In appreciation, Jon

    Hmmm
    It was so long ago but I think it was 2-3 treatments for me.
    Take the anti-biotic if you can. They help a lot.
    -p
  • david54
    david54 Member Posts: 164 Member
    #14
    Irinotecan
    Hi-my name is David and I am new here - my wife is receiving Irinotecan (FOLFIRI) and it can cause severe diarrhea, she is always given atropine as a preventative measure and has had no problems in that area. Her biggest issue is that she develops terrible cold sores (like a canker sore) on her lips and inside her cheeks, making eating an experience in extreme discomfort. As a result it’s a lot of yogurt, ice cream, soft foods without spices for awhile. They usually subside just about when its time for another treatment. And she does have thinning hair (Still the most beautiful woman I have ever known) with sneezing fits a day or two following treatment.
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #15
    david54 said:

    Irinotecan
    Hi-my name is David and I am new here - my wife is receiving Irinotecan (FOLFIRI) and it can cause severe diarrhea, she is always given atropine as a preventative measure and has had no problems in that area. Her biggest issue is that she develops terrible cold sores (like a canker sore) on her lips and inside her cheeks, making eating an experience in extreme discomfort. As a result it’s a lot of yogurt, ice cream, soft foods without spices for awhile. They usually subside just about when its time for another treatment. And she does have thinning hair (Still the most beautiful woman I have ever known) with sneezing fits a day or two following treatment.

    Magic Mouthwash
    There is a product that I believe you need a prescription for called Magic Mouthwash that helps with the mouth sores. I had them after a few treatments, then they went away. When I took the Irinotecan (or CPT11 as it's also called) I would have the opposite effect on me. I was corked for a few days.
    The best to your wife and you
    -phil
  • kimby
    kimby Member Posts: 797
    #16
    david54 said:

    Irinotecan
    Hi-my name is David and I am new here - my wife is receiving Irinotecan (FOLFIRI) and it can cause severe diarrhea, she is always given atropine as a preventative measure and has had no problems in that area. Her biggest issue is that she develops terrible cold sores (like a canker sore) on her lips and inside her cheeks, making eating an experience in extreme discomfort. As a result it’s a lot of yogurt, ice cream, soft foods without spices for awhile. They usually subside just about when its time for another treatment. And she does have thinning hair (Still the most beautiful woman I have ever known) with sneezing fits a day or two following treatment.

    Mouth Sores
    David,

    The best way to prevent the mouth sores is to suck on ice chips during infusion. (for those of folfox reading this, do not try this with oxiliplatin!) The ice chips really do work. Once she has the mouth sores, I found 1/2 tsp of salt and 1/2 tsp of baking soda in a big glass of water as mouth rinse really worked. I developed a habit that kept them at bay: suck on ice chips during infusion, rinse with the about rinse every time I went to the restroom or walked through the kitchen, brush with a toddler toothbrush and Biotene toothpaste several times a day. All of this keeps the mouth clean and prohibits bacteria growth - and it kept my mouth clear.

    HTH,

    Kimby

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