Thoughts on Erbitux (Cetuximab)

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abita
abita Member Posts: 1,152 Member

I might be taking this. Seeing if insurance approves it. Anyone know the good, the bad, and the ugly about this one. I would be taking it with irinotecan,

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  • Trubrit
    Trubrit Member Posts: 5,800 Member
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    I've read several things.....

    both good and bad. 

    Phil - one of our Stage IV survivort,  was on it. He had a terrible rash on his face and neck, and I do believe they call Irinotecan I Run To The Can because it can cause severe dhiarreha.  

    I'm sure someone will post soon, that has been down that road, and can help you. 

    And no, I CANNOT SPELL DIAHRRHEA and I'm sick of looking it up. 

    Tru

  • smitty479
    smitty479 Member Posts: 2
    edited June 2019 #3
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    My Experience

    I was on Irinotecan and erbitux. It saved my life. I had one tumor that came back in my liver and the tecan burned it out. It was a difficult treatment though, I am not going to lie. I have been on folofox/olayplatin and the ironotecan alsmost made me give up. I saw others on the same thing at my infusion center and they dealt with it well. I was on cetuximab every other week for 4 years. Mild rash that was controlled with doxycycline, some fatigue but it was a picnic compared to irinotecan. I did really well on cetuximab, it was nothing compared to my other treatments. Hope this helps.

  • abita
    abita Member Posts: 1,152 Member
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    smitty479 said:

    My Experience

    I was on Irinotecan and erbitux. It saved my life. I had one tumor that came back in my liver and the tecan burned it out. It was a difficult treatment though, I am not going to lie. I have been on folofox/olayplatin and the ironotecan alsmost made me give up. I saw others on the same thing at my infusion center and they dealt with it well. I was on cetuximab every other week for 4 years. Mild rash that was controlled with doxycycline, some fatigue but it was a picnic compared to irinotecan. I did really well on cetuximab, it was nothing compared to my other treatments. Hope this helps.

    I got some of that to be

    I got some of that to be ready.  Ine spot on my face and I am taking it!I hope this is as successful for me as it was for you!

  • abita
    abita Member Posts: 1,152 Member
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    Trubrit said:

    I've read several things.....

    both good and bad. 

    Phil - one of our Stage IV survivort,  was on it. He had a terrible rash on his face and neck, and I do believe they call Irinotecan I Run To The Can because it can cause severe dhiarreha.  

    I'm sure someone will post soon, that has been down that road, and can help you. 

    And no, I CANNOT SPELL DIAHRRHEA and I'm sick of looking it up. 

    Tru

    I didn't get that side effect

    I didn't get that side effect today, and I have an antibiotic on hand to take at first sign of rash. Also, the nurse told me that they have a doctor just for treating of rashes who has a plethora of possible treatments for it. And yes, I spent more time quizzing about the rash, than about possible heart aide effects 

  • Ruthmomto4
    Ruthmomto4 Member Posts: 708 Member
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    I don’t know a thing

    about it, my husband took one dose of irinotecan and got pancreatitis so he couldn’t take it again. That’s just him though so many do fine with it!!! You will be fine with it I know it! Still thinking of you!

  • SoCal42
    SoCal42 Member Posts: 78
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    Erbitux

    I’ve been on Erbitux for 10 weeks now, with irinotecan/5FU for lung mets. Moderate acne-like rash on face, scalp, chest and back. Taking doxycycline and Zyrtec daily, which helps. Had some allergic reaction at first infusion, so also receive IV Benadryl and IV prednisone at each infusion. Sore spots around multiple toenails and persistent cracking of skin on fingertips, so I often have to keep fingers protected with ointment.

  • SoCal42
    SoCal42 Member Posts: 78
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    Erbitux

    Because of the rash, my doctor really wants to keep me on this

  • abita
    abita Member Posts: 1,152 Member
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    SoCal42 said:

    Erbitux

    I’ve been on Erbitux for 10 weeks now, with irinotecan/5FU for lung mets. Moderate acne-like rash on face, scalp, chest and back. Taking doxycycline and Zyrtec daily, which helps. Had some allergic reaction at first infusion, so also receive IV Benadryl and IV prednisone at each infusion. Sore spots around multiple toenails and persistent cracking of skin on fingertips, so I often have to keep fingers protected with ointment.

    I am proactively taking the

    I am proactively taking the antibiotic too. Guess good to know that rash comes even with it. I read your post last night, and thanks. It reminded me that no matter how tired I was, stop, and lotion up. 

    It is only the first week, so I am not really feeling that yucky, except for food. On folfox, I gained weight, was starving all the time. Not sure if it is these two drugs, or the antibiotic, but I am definitely not starving and doubt I will gain weight this go round. The first 3 days I could basically only stomach bread with butter. Yesterday, I did add some cherries, and hoping today to eat some of this watermelon and berries that I bought before realizing was starting chemo this week.

  • Twinzma
    Twinzma Member Posts: 236 Member
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    Jim's on it

    My hubby has been on it for about 14 months. The rash can get bad, but antibiotics clear it up pretty quickly. You need to avoid the sun for sure! He is, as you can tell by now, very stubborn and still gets a lot of sun exposure! I bought him a ton of sun shirts and a big floppy hat which helps. Now the most annoying thing for him is the splitting fingers and feet. In fact today he can hardly walk from them. We have tried every lotion under the sun and nothing gives relief or prevents it. The fingers have improved but the feet are a nightmare for him! He says that it is very painful. However the disease is not growing and is stable so there has to be something said for that. In regards to insurance, ours did not cover it so he applied for charity and it's completely covered. The drug manufacturer reduced the price for us and the hospital writes the rest off....So there are options if you are denied by insurance. 

  • abita
    abita Member Posts: 1,152 Member
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    Well, got the pimples already

    Well, got the pimples already on the first round. I thought that happens on the second or third round. Thank goodness I got the antibiotics to take proactively or I am guessing it would be really bad.

  • abita
    abita Member Posts: 1,152 Member
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    smitty479 said:

    My Experience

    I was on Irinotecan and erbitux. It saved my life. I had one tumor that came back in my liver and the tecan burned it out. It was a difficult treatment though, I am not going to lie. I have been on folofox/olayplatin and the ironotecan alsmost made me give up. I saw others on the same thing at my infusion center and they dealt with it well. I was on cetuximab every other week for 4 years. Mild rash that was controlled with doxycycline, some fatigue but it was a picnic compared to irinotecan. I did really well on cetuximab, it was nothing compared to my other treatments. Hope this helps.

    Did you ever have surgery?

    Did you ever have surgery? Are you still on the drugs? Can you tell I am wishing desparately that I can eventually be in 'remission" from chemo alone since not a surgical candidate?

  • abita
    abita Member Posts: 1,152 Member
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    Twinzma said:

    Jim's on it

    My hubby has been on it for about 14 months. The rash can get bad, but antibiotics clear it up pretty quickly. You need to avoid the sun for sure! He is, as you can tell by now, very stubborn and still gets a lot of sun exposure! I bought him a ton of sun shirts and a big floppy hat which helps. Now the most annoying thing for him is the splitting fingers and feet. In fact today he can hardly walk from them. We have tried every lotion under the sun and nothing gives relief or prevents it. The fingers have improved but the feet are a nightmare for him! He says that it is very painful. However the disease is not growing and is stable so there has to be something said for that. In regards to insurance, ours did not cover it so he applied for charity and it's completely covered. The drug manufacturer reduced the price for us and the hospital writes the rest off....So there are options if you are denied by insurance. 

    My skin in face got a bit red

    My skin in face got a bit red, dry, and hurt around some of the pimples. I have a face cream that is very expensive,  but normally lasts well over a year. Anyway, I slathered it on and the next morning, still had a few pimples,  but no red or pain. So gonna keep splurging. I also have their body lotion so proactively using that hoping to not get that peeling skin effect. The cream is creme de la mer. I use their sunscreen also. Erbutix sends out a box of lotions and nail kit if you ask. I will keep that in my work desk as they are small and good to have some sunscreen handy.

  • Kazenmax
    Kazenmax Member Posts: 463 Member
    edited July 2019 #14
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    Anita,

    Anita,

    I have not had this but I am hoping you will benefit from this drug. I want you to know that I have been following your progress and waiting for the thing that turns everything around. Hoping this will do it!

    Also hoping side effects aren't bad. Keep us up to date. Sending love X strength.

    K

  • SoCal42
    SoCal42 Member Posts: 78
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    abita said:

    I am proactively taking the

    I am proactively taking the antibiotic too. Guess good to know that rash comes even with it. I read your post last night, and thanks. It reminded me that no matter how tired I was, stop, and lotion up. 

    It is only the first week, so I am not really feeling that yucky, except for food. On folfox, I gained weight, was starving all the time. Not sure if it is these two drugs, or the antibiotic, but I am definitely not starving and doubt I will gain weight this go round. The first 3 days I could basically only stomach bread with butter. Yesterday, I did add some cherries, and hoping today to eat some of this watermelon and berries that I bought before realizing was starting chemo this week.

    Erbitux update

    Now about 13 weeks of Erbitux, with a couple of short breaks for unrelated issues. Also on FOLFIRI at the same time for lung mets. Good news is that the acne has calmed down quite a bit since the first few weeks, I think the doxycyclne/Zyrtec may be a big part of that. Also use topical clindamycin solution on some of the rash, but not on my face, or it gets too dry and sore. Soreness around the toenails and cracks/blistering on fingers/toes is continuous, thumbs are the worst. I tried doing cold therapy during the infusion (sticking my thumbs in cups of ice during the 1-hour infusion). It seemed to help a lot for two infusions and not at all for another infusion, so I don't really know what to think about that. Bandaids on the fingers are annoying, so instead, I cut the fingertips off non-latex exam gloves, put ointment on the fingers that are cracking, then cover it with the exam glove fingers and a little tape to hold in place. If you do this, just be aware that if you keep your fingers covered too long, they may start blistering, and then you have a whole new finger problem.

    The rash is expected in 90% of patients. Oncologists like to see the rash because it's correlated with better survival rates.