Curious...Erbitux experiences

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apache4
apache4 Member Posts: 272 Member
edited March 2014 in Colorectal Cancer #1
I know that I have posted my experiences with Erbitux and it's side effects. So, now, I am wondering what experiences other have had with it. Most have mentioned the rash, but has anyone else had this inflammation around finger and toenails? It has taken three months for my toe to be almost normal again and my thumb is working on month two. How many treatments have you all tolerated? I got through 13 infusions (once a week for 13 weeks) before saying, "Enough!". Thanks in advance for all replies...a little research here :)

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  • fez1
    fez1 Member Posts: 47
    #2
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    Erbitux experiences
    I would also like to hear others experiences. My husband may go on it depending on his KRAS results. I'm so worried. He had a terrible time with the side effects from FOLFOX and FOLFIRI. He said then that he's never go on chemo again, but here we are, back with 3 inoperable liver tumors so Erbitux may be next. Can you explain the regimen for me? Is it weekly? and for how long? What is it combined with? We planned a large extended family vacation over Thanksgiving before we knew about his recurrence. I hope that he'll be able to make it. Did any of you make travel plans while on treatment? Any advice about Erbitux would be greatly appreciated.

    Carol
  • apache4
    apache4 Member Posts: 272 Member
    #3
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    fez1 said:

    Erbitux experiences
    I would also like to hear others experiences. My husband may go on it depending on his KRAS results. I'm so worried. He had a terrible time with the side effects from FOLFOX and FOLFIRI. He said then that he's never go on chemo again, but here we are, back with 3 inoperable liver tumors so Erbitux may be next. Can you explain the regimen for me? Is it weekly? and for how long? What is it combined with? We planned a large extended family vacation over Thanksgiving before we knew about his recurrence. I hope that he'll be able to make it. Did any of you make travel plans while on treatment? Any advice about Erbitux would be greatly appreciated.

    Carol

    Erbitux regimen
    I would imagine that different cases might call for slightly different regimens, but here is what I did.
    First week: Avastin
    Irinotecan (CPT-11, Campostar)
    Erbitux
    Second week: Irinotecan
    Erbitux
    Third week: Erbitux
    And then start all over again...no break.
    I have always been told that I will be on chemo forever. So, I really don't know how long I would have stayed on this. I go to onc tomorrow to see what he has to say. I am going to ask for a PET scan to see how much lights up in my liver. A year ago, the PET showed no evidence of disease and then two months later I was back on chemo. It is all very confusing and different for each person. My mets are so many that they can't even count them.
    My best to you and your hubby. I hope more people respond.
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #4
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    Erbitux experience
    Hi,
    I've had two treatments of weekly Erbitux infusion so far (along with Camptosar & Avastin). This past week, my third treatment, I ended up pleading w/ my oncologist to skip the Erbitux because I couldn't deal with the rash any longer. Starting 6 days after my first treatment w/ the Erbitux, I started breaking out with numerous whiteheads on my chin and forehead. Two days later, I looked like an absolute monster. It was also all over my scalp and in my ears, behind my ears, my neck, chest, and back. Worse than my appearance, was dealing with how painful it was. I couldn't even lay my head down on the pillow at night without it hurting. The day of my second treatment of it, I was given oral antibiotics and some topical prescription creams, as well. I would say about 8 days after I started on the antibiotics is when it started getting better. I had two days of intense itching, when I think the scabs were healing, and today it is almost gone.
    The plan, however, is to wait another week and then try the Erbitux again at 50% strength. My oncologist says it's an important enough treatment to try it again. My question to him was is 50% going to be enough to do anything to the cancer & will it just give me a rash again? He seems to think it will be fine, but "we'll see".. I supposedly had the most extreme reaction to the Erbitux they had ever seen in their oncology office (lucky me). Supposedly, most people do get some kind of rash from it, but not nearly as badly as I got.
    I've not had any problem (so far, anyhow) with problems with my toe or fingernails from it.
    I worry not getting it in the meantime, but am leary of starting it up again.
    Lisa

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