Erbitux

davidh03
davidh03 Member Posts: 9
edited March 2014 in Colorectal Cancer #1
Has anyone had any experience with Erbitux in a situation of Stage IV colon cancer that metastasized to the lungs?

My mom is 66 years old and has had several surgeries on her colon and lungs to remove the tumors. They were removed and she was okay for a few months while she was on a clinical trial. We recently did a scan and there is some new activity. The clinical trial did not work.

We're thinking of trying Erbitux but I am wondering about its actual benefits because of the harsh skin rashes.

I've read some of the posts on here but they seem a little dated. Anyone have any experience with Erbitux and can you offer any advice on if it's worth it? Or do you know of any other medications that can be used with it to reduce the severity of the rashes?

Thanks so much.

Comments

  • shrevebud
    shrevebud Member Posts: 105
    #2
    Hi David:

    I have stage IV colon cancer and was on Vectobix this spring and summer - it's basically the chemical cousin of Erbitux. It did really nasty things to my skin, my face, scalp, my chest, stomach, back, upper torso area were all broken out and painful. My scalp bled and hurt a lot. My doctor said he had never seen a case of skin reaction this bad. We tried oral anitbiotics and antibitoic ointment - that seemed to help my face. Finally, I just told my doctor that I had stood it as long as I could and we stopped it. I still have discoloration on my skin - it looks like freckles - my skin used to be really smooth looking. These may fade with time. I sure don't miss being on this medicine. Sorry to give you such a bad opinion, but that was my experience. Ironically, if you develop a rash, it is seen as an indicator that the medicine is working, go figure? I was told and my research showed that steroids and things like that do not suppress the rash - it's not a histamine type rash like a poison ivy reaction is. I wish your Mom the best of luck if she makes the decision to try this medicine. I was willining to try it and I did, so at least I found out what it was like. I'll be thinking of you two. Take care. Roy. Maybe someone who has actually been on Erbitux will chime in and share their experience. I find it helps to hear more than one story about something.
  • pokismom
    pokismom Member Posts: 153
    #3
    Erbitux
    Hi,
    I was on erbitux for a trial, stage 3 last year. I broke out allover, face, back, chest, it was terrible . I had some gel to put on it and had encountered some swollen lymph nodes on my head, so then I was on antibiotics. I hope Phil reads this one, he's been on it for a while and has good results. Me, don't think it helped me, I'm now stage 4 mets to lungs also. I wish your mother the best, and will pray for her also.
    Much love,
    Donna
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #4
    Erbitux
    I have been on Erbitux for over 3 years. It's worth it. The rash was mild to moderate for me. I did/do get it on my face mostly but I'm gotten it down to every other month and every other week the month I am on it. At first it was worse and it was "normal" as far as the nurses and Onc said. I had trouble with split fingers too and some issues with my toe nails. Antibiotics and cremes can help with the rash. It has kept tumors stable and shrunk some so it worked for me. I still have 3 small spots left and so far so good.

    It beats the alternative in my opinion.
    Search more, there are many recent posts about it. This topic comes up at least once a month.
    Best of luck
    -phil
  • dash4
    dash4 Member Posts: 303 Member
    #5
    erbitux believer
    My husband was diagnosed Stage IV 10/04 and just lost his battle 9/25. When his cancer returned in 10/05 in his chest and abdomen we started erbitux weekly and irinotecan biweekly and it never diminished the cancer but kept things stable and then moving very slowly...It gave us 4 more years together...wonderful years - our life was different than if my husband had been healthy, but we adjusted and still "lived"!
    The rash was so severe (which means it is working) at first my husband was hospitalized,,,,,but many trials and tribulations -what worked was keflex (at first) for the infection 500 mg 3X day and soriatane (a psoriasis med) 25 mg 2xday....we learned over the years to start and stop and go to 1xday with the soriatane depending on the rash.
    My husband's battle ended due to liver failure-the cancer never returned to his colon or his liver..was in his abdomen, chest and lungs -and at this point was not life threatening, but his liver could just not take anymore.
    I will keep you and yours in my prayers....
    Mary Kay
  • dash4
    dash4 Member Posts: 303 Member
    #6
    shrevebud said:

    Hi David:

    I have stage IV colon cancer and was on Vectobix this spring and summer - it's basically the chemical cousin of Erbitux. It did really nasty things to my skin, my face, scalp, my chest, stomach, back, upper torso area were all broken out and painful. My scalp bled and hurt a lot. My doctor said he had never seen a case of skin reaction this bad. We tried oral anitbiotics and antibitoic ointment - that seemed to help my face. Finally, I just told my doctor that I had stood it as long as I could and we stopped it. I still have discoloration on my skin - it looks like freckles - my skin used to be really smooth looking. These may fade with time. I sure don't miss being on this medicine. Sorry to give you such a bad opinion, but that was my experience. Ironically, if you develop a rash, it is seen as an indicator that the medicine is working, go figure? I was told and my research showed that steroids and things like that do not suppress the rash - it's not a histamine type rash like a poison ivy reaction is. I wish your Mom the best of luck if she makes the decision to try this medicine. I was willining to try it and I did, so at least I found out what it was like. I'll be thinking of you two. Take care. Roy. Maybe someone who has actually been on Erbitux will chime in and share their experience. I find it helps to hear more than one story about something.

    rash meds...
    Please read my post reply - my husband's rash was like yours and after many failures with meds, we found the one that did work - it is miraculous how good his skin looked again on erbitux. It is good info if you ever go back on the drug.
    Mary Kay
  • Unknown
    Unknown
    #7
    shrevebud said:

    Hi David:

    I have stage IV colon cancer and was on Vectobix this spring and summer - it's basically the chemical cousin of Erbitux. It did really nasty things to my skin, my face, scalp, my chest, stomach, back, upper torso area were all broken out and painful. My scalp bled and hurt a lot. My doctor said he had never seen a case of skin reaction this bad. We tried oral anitbiotics and antibitoic ointment - that seemed to help my face. Finally, I just told my doctor that I had stood it as long as I could and we stopped it. I still have discoloration on my skin - it looks like freckles - my skin used to be really smooth looking. These may fade with time. I sure don't miss being on this medicine. Sorry to give you such a bad opinion, but that was my experience. Ironically, if you develop a rash, it is seen as an indicator that the medicine is working, go figure? I was told and my research showed that steroids and things like that do not suppress the rash - it's not a histamine type rash like a poison ivy reaction is. I wish your Mom the best of luck if she makes the decision to try this medicine. I was willining to try it and I did, so at least I found out what it was like. I'll be thinking of you two. Take care. Roy. Maybe someone who has actually been on Erbitux will chime in and share their experience. I find it helps to hear more than one story about something.

    This comment has been removed by the Moderator
  • davidh03
    davidh03 Member Posts: 9
    #8
    dash4 said:

    erbitux believer
    My husband was diagnosed Stage IV 10/04 and just lost his battle 9/25. When his cancer returned in 10/05 in his chest and abdomen we started erbitux weekly and irinotecan biweekly and it never diminished the cancer but kept things stable and then moving very slowly...It gave us 4 more years together...wonderful years - our life was different than if my husband had been healthy, but we adjusted and still "lived"!
    The rash was so severe (which means it is working) at first my husband was hospitalized,,,,,but many trials and tribulations -what worked was keflex (at first) for the infection 500 mg 3X day and soriatane (a psoriasis med) 25 mg 2xday....we learned over the years to start and stop and go to 1xday with the soriatane depending on the rash.
    My husband's battle ended due to liver failure-the cancer never returned to his colon or his liver..was in his abdomen, chest and lungs -and at this point was not life threatening, but his liver could just not take anymore.
    I will keep you and yours in my prayers....
    Mary Kay

    Thank You
    Thanks so much for all of your advice and replies! This my first time reaching out to people on a discussion board for advice like this and I am so surprised by all of the support and prayers. Wow, I will let my mom know.

    We went to the oncologist today to talk about treatments and turns out that she does have the KRas mutation so she can't take Erbitux or Vectobix. She's going to do Irinotecan/5-FU/Avastin. Have you all tried this combo? I was reading about Irinotecan compared to Oxalyplatin and it seems like it's more effective...
  • Shayenne
    Shayenne Member Posts: 2,342
    #9
    davidh03 said:

    Thank You
    Thanks so much for all of your advice and replies! This my first time reaching out to people on a discussion board for advice like this and I am so surprised by all of the support and prayers. Wow, I will let my mom know.

    We went to the oncologist today to talk about treatments and turns out that she does have the KRas mutation so she can't take Erbitux or Vectobix. She's going to do Irinotecan/5-FU/Avastin. Have you all tried this combo? I was reading about Irinotecan compared to Oxalyplatin and it seems like it's more effective...

    I'm on it.....
    ......Yes, I take Folfiri with Avastin, and it's supposed to be more tolerable then the Folfox.. and it has been very effective for me, and shrunk my tumors! I hope it works well with her too!

    Hugsss!
    ~Donna

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