Erbitux

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bigCrandy
bigCrandy Member Posts: 75
edited March 2014 in Colorectal Cancer #1
Hey everybody, I'm gonna start taking Erbitux and Irinotecan next week for Stage 4 mets to lungs and a few lymph nodes. I've been through all the drugs for colon cancer the last 3 years including xeloda which I had to stop taking due to severe hand and mouth problems. I'm familiar with Irinotecan but will be new to Erbitux. I hear the skin rash is pretty much a guarantee side effect. Any information would be greatly appreciated. Stay strong and God Bless everyone. Thanks, Randy

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  • vhtqm1
    vhtqm1 Member Posts: 107
    #2
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    currently on Cetuximab and Irinotecan
    i noticed you wrote about the Cetuximab causing skin rash. yes it does and also **which i've posted in the past** a rash is possibly a good sign the drug is working. the cells of the skin **epidermous** and those nasty mets to Lungs and or Liver etc...are so similar that a reaction isn't such a bad side effect. some other effects i've had are feeling very tired, sleepy, muscle aches, some nausea, some vomiting and some diarea. all of which i've been able to manage quite well. you of course will have lab work on a regular basis and always pay attention to your immune system, liver function, red blood cells, plateletts etc...in regard to blood testing interfering with treatment the only experience i've had is plateletts being too low and we wait a week which seems to allow the plateletts to rebound and treatment to resume. hope this helps??

    ed
  • bigCrandy
    bigCrandy Member Posts: 75
    #3
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    vhtqm1 said:

    currently on Cetuximab and Irinotecan
    i noticed you wrote about the Cetuximab causing skin rash. yes it does and also **which i've posted in the past** a rash is possibly a good sign the drug is working. the cells of the skin **epidermous** and those nasty mets to Lungs and or Liver etc...are so similar that a reaction isn't such a bad side effect. some other effects i've had are feeling very tired, sleepy, muscle aches, some nausea, some vomiting and some diarea. all of which i've been able to manage quite well. you of course will have lab work on a regular basis and always pay attention to your immune system, liver function, red blood cells, plateletts etc...in regard to blood testing interfering with treatment the only experience i've had is plateletts being too low and we wait a week which seems to allow the plateletts to rebound and treatment to resume. hope this helps??

    ed

    erbitux(cetuximab)
    Hey Ed, thanks for your first hand info on the side effects. It's always better to know in advance what to look for. I'll be ready.(ha) Thank you, Randy
  • Paula G.
    Paula G. Member Posts: 596
    #4
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    I have read posts that the
    I have read posts that the rash doesn't mean it is working or not. Phil is the guy to ask he has been on it and has a lot of knowledge. I hope he will chime in for you. Paula
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #5
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    First thing Randy
    Don't do anything rash! (ha-ha) Yes, the rash is the big issue with Erbitux. One thing you should take to your Onc about is taking minocyclin for it. It's an anti-biotic and when taken daily really helps keep the rash from getting too bad. One thing I did find was that the hot weather was not kind to it, the heat seemed to aggravate it more. I did find that swimming helped with keeping the rash a little bit less. I have been on Erbitux for 4 years or so. The rash was quite bad at first. I remember scaring kids with it. Surprisingly most people in stores hardly seemed to notice it and if they did they we're freaked out by it. That may tell you a lot about what the people look like in the area I live. Always have to check out WalMart for the real good ones. Another annoying side effect is how it tends to make the tips of your fingers split. It seemed that no matter what I did it would still happen. I am getting the meds every two weeks (I'm on a short break now and things cleared up to just about normal in under 2 months) and it would seem that 1 or 2 days after my infusion, the rash got worse then maybe 4-5 days after that, it would start to lessen and I'd be sort of OK for a few days then I'd repeat the cycle. The fingers build up after a few treatments. One thing I noticed was that I had more splits on my right hand than my left one. I play guitar and I think the callouses protected them a bit. Then they would start on both hands and I'd often have to tape my fingers to protect them. Aquaphore and Bag Balm are two products that help ease the symptoms.

    I've gone through cycles where I am on Erbitux only, then other cycles where I was on that and Irinotecan. I found the Irinotecan to cause some stomach cramping. I used to get an incredible amount of pre-meds before chemo but I had them cut it back a few months ago and it helped lessen the side effects a bit.

    That's about it. I will say that I've found the meds to be very helpful. It keeps the nodes in my lung in check. I wish you the best of luck with it. I hope it does it's job and the side effects become manageable quickly.
    -p

    PS: I don't know how long I will keep this as my profile photo but this is my latest toy. An Epiphone Les Paul Jr. It's guitar #10. A nice round number
  • bigCrandy
    bigCrandy Member Posts: 75
    #6
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    PhillieG said:

    First thing Randy
    Don't do anything rash! (ha-ha) Yes, the rash is the big issue with Erbitux. One thing you should take to your Onc about is taking minocyclin for it. It's an anti-biotic and when taken daily really helps keep the rash from getting too bad. One thing I did find was that the hot weather was not kind to it, the heat seemed to aggravate it more. I did find that swimming helped with keeping the rash a little bit less. I have been on Erbitux for 4 years or so. The rash was quite bad at first. I remember scaring kids with it. Surprisingly most people in stores hardly seemed to notice it and if they did they we're freaked out by it. That may tell you a lot about what the people look like in the area I live. Always have to check out WalMart for the real good ones. Another annoying side effect is how it tends to make the tips of your fingers split. It seemed that no matter what I did it would still happen. I am getting the meds every two weeks (I'm on a short break now and things cleared up to just about normal in under 2 months) and it would seem that 1 or 2 days after my infusion, the rash got worse then maybe 4-5 days after that, it would start to lessen and I'd be sort of OK for a few days then I'd repeat the cycle. The fingers build up after a few treatments. One thing I noticed was that I had more splits on my right hand than my left one. I play guitar and I think the callouses protected them a bit. Then they would start on both hands and I'd often have to tape my fingers to protect them. Aquaphore and Bag Balm are two products that help ease the symptoms.

    I've gone through cycles where I am on Erbitux only, then other cycles where I was on that and Irinotecan. I found the Irinotecan to cause some stomach cramping. I used to get an incredible amount of pre-meds before chemo but I had them cut it back a few months ago and it helped lessen the side effects a bit.

    That's about it. I will say that I've found the meds to be very helpful. It keeps the nodes in my lung in check. I wish you the best of luck with it. I hope it does it's job and the side effects become manageable quickly.
    -p

    PS: I don't know how long I will keep this as my profile photo but this is my latest toy. An Epiphone Les Paul Jr. It's guitar #10. A nice round number

    Thanks for the imput
    I very much appreciate your wonderful and thorough description of erbitux side effects. I will do my best to prepare myself for a hideous rash. I still have a full beard so maybe it won't be so noticeable, unless I lose my hair again. Good work and Thanks, Randy
  • Hatshepsut
    Hatshepsut Member Posts: 336 Member
    #7
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    Erbitux and Vectibix
    I'm curious whether Erbitux and Vectibix are essentially the same drug. Our oncologist described Vectibix, which my husband is taking, as being a drug very similar to Erbitux.

    Has anyone been given the option to take the second drug if the first one becomes ineffective? That would be good news in that it would give us one more option.

    There was a inquiry about Vectibix on this board recently. In the course of the discussion of that drug, there was some discussion of the rash and whether having a rash was a sign that the drug was working. There is a link to an article about Erbitux and Vectibix and the rash and there is an informative post by TrapBear explaining how and why the drugs cause a rash.

    Link: Vectibix and The Rash Thread

    Hatshepsut

    P.S. Pretty guitar, Phil.
  • robinvan
    robinvan Member Posts: 1,012
    #8
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    bigCrandy said:

    Thanks for the imput
    I very much appreciate your wonderful and thorough description of erbitux side effects. I will do my best to prepare myself for a hideous rash. I still have a full beard so maybe it won't be so noticeable, unless I lose my hair again. Good work and Thanks, Randy

    Ditto what Phil said.
    Hi Randy,

    I use a medicated oil for my scalp:
    CLIN2%-TRIAM-PROPGLY

    and a cream for my face, shoulders and chest:
    CLIN1%-HC-NUTRADERM

    I'm finding my wife's Clinique face cream is working best for the face.

    Moisturize-moisturize-moisturize! Never thought I'd be saying that! I live in a cooler climate so sun hasn't been a problem yet.

    The IRINOTECAN caused hair loss with me.

    All the very best... Rob;in Vancouver
  • eric38
    eric38 Member Posts: 583
    #9
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    Hatshepsut said:

    Erbitux and Vectibix
    I'm curious whether Erbitux and Vectibix are essentially the same drug. Our oncologist described Vectibix, which my husband is taking, as being a drug very similar to Erbitux.

    Has anyone been given the option to take the second drug if the first one becomes ineffective? That would be good news in that it would give us one more option.

    There was a inquiry about Vectibix on this board recently. In the course of the discussion of that drug, there was some discussion of the rash and whether having a rash was a sign that the drug was working. There is a link to an article about Erbitux and Vectibix and the rash and there is an informative post by TrapBear explaining how and why the drugs cause a rash.

    Link: Vectibix and The Rash Thread

    Hatshepsut

    P.S. Pretty guitar, Phil.

    I am on my second go around
    I am on my second go around with erbitux. It worked so well the first time that the doctor decided to shelve it in case I needed it again later. He didn't want my body to get too used to the treatment. Unfortunately, I have had a recurrence so he put me back on it. The second time around the symptoms have not been as severe but they started happening a lot sooner. I have the rash but the pain is not as bad. When I say pain I mean a burning sensation. The first onslaught can be a bear but it does subside. I felt like my face was on fire. I think that only lasted about a week and then it calmed down. Itching and dry crackling skin are my main thing now along with a red face and acne on the chest and stomach. The good news is. It worked really well for me and hopefully it's doing the same this time. So, when it works, it works really well. Also, I have some killer eyelashes. I don't know why but it seems to make my eyelashes grow. I have eyelashes like a woman. Just so you know - everything else is pure man.

    ( : . ) Eric

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