cancer is growing -Erbitux?

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cjf2006
cjf2006 Member Posts: 83
edited March 2014 in Colorectal Cancer #1
I just had my dr visit after a two month break from chemo. The CT scan showed a 30% growth in certain tumors in my lungs and liver(as the radiology report says, I have "innumerable pulmonary and hepatic metasteses" so they don't measure them all.) CEA went up to 313. I have to start chemo next Tu. My dr is going to start me out with what I had before, (camptosar, 5FU,Avastin) but will watch the CEA. Then she may switch me to Erbitux with the Camptosar. I was encouraged to read bscurlock's report that Erbitux worked for DH. I would like to hear from others who have had it. How did it work for you? Does the rash ever go away? Is it painful/itchy/interfere with life?

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  • livefreeordie
    livefreeordie Member Posts: 45
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    Erbitux has been keeping me alive for the last 7 months.. my tumors are too big for surgery. last month there was a 30% srinkage..
    I think I read that Erbitux alone isnt affective. In my case I have to take it with folfox every other week. The rash comes and goes, but that means its working. It sucks when its on the face, its like being a teenager all over again. But, it doesnt itch or anything. Thats the only side affect i've had from it..
  • cjf2006
    cjf2006 Member Posts: 83
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    Erbitux has been keeping me alive for the last 7 months.. my tumors are too big for surgery. last month there was a 30% srinkage..
    I think I read that Erbitux alone isnt affective. In my case I have to take it with folfox every other week. The rash comes and goes, but that means its working. It sucks when its on the face, its like being a teenager all over again. But, it doesnt itch or anything. Thats the only side affect i've had from it..

    Thanks for the reply.I was told I'd have to have it once a week. I'm exploring my options since it is all a guessing game as to what will work or not. I had folfox before, but there was too much neuropathy. It did a good job of shrinking the tumors though.
  • KFalvey
    KFalvey Member Posts: 118 Member
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    I had a test to see if Erbitux would work for me. It was done on the tumor slides from surgery to check for K-RAS mutations. If you have this type K-RAS it will not work. The test is very expensive, and my Dr. didn't tell me it is not always covered by insurance; now I'm waiting to see if I'll have to pay $4500. myself. Ask your Dr. about it and be sure to check with your insurance company before having the test to see if they will cover it. From what I've read about it 43% of our cancers have the K-Ras mutation. That's a lot of people getting this drug when it will not benefit them. Good Luck!!
    Kandy
  • Monicaemilia
    Monicaemilia Member Posts: 455 Member
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    I'm on Erbitux and Irinotecan and it's keeping everything stable. I just have a few tiny nodules in lungs as I have had a liver resection. I've been on this since May 2007. The rash is a pain and for me it was itchy at first, but the itchiness goes away. The doctors can give you prescriptions for the rash and for the pimples. I found the Erbitux to be much more tolerable than any other chemo I have been on. I hope all goes well for you. Monica
  • cjf2006
    cjf2006 Member Posts: 83
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    KFalvey said:

    I had a test to see if Erbitux would work for me. It was done on the tumor slides from surgery to check for K-RAS mutations. If you have this type K-RAS it will not work. The test is very expensive, and my Dr. didn't tell me it is not always covered by insurance; now I'm waiting to see if I'll have to pay $4500. myself. Ask your Dr. about it and be sure to check with your insurance company before having the test to see if they will cover it. From what I've read about it 43% of our cancers have the K-Ras mutation. That's a lot of people getting this drug when it will not benefit them. Good Luck!!
    Kandy

    Thanks. I hadn't heard about that test. I did read on the erbitux website that EGFR ( a protein I think) has to be present in order for the drug to do any good. What a waste if one gets the drug and there is no use for it.
  • cjf2006
    cjf2006 Member Posts: 83
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    I'm on Erbitux and Irinotecan and it's keeping everything stable. I just have a few tiny nodules in lungs as I have had a liver resection. I've been on this since May 2007. The rash is a pain and for me it was itchy at first, but the itchiness goes away. The doctors can give you prescriptions for the rash and for the pimples. I found the Erbitux to be much more tolerable than any other chemo I have been on. I hope all goes well for you. Monica

    Thanks for the reply. Remaining stable is my dr's goal for me.
  • 2bhealed
    2bhealed Member Posts: 2,064 Member
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    hi,

    you can try www.cancerdecisions.com for some info on Erbitux.

    peace, emily
  • dash4
    dash4 Member Posts: 303 Member
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    My husband is becoming the erbitux "poster child" I think. He has had weekly erbitux and biweekly irinotecan since 11/05. He has had a few breaks for different reasons, but the chemo keeps him stable.
    Brief history - Stage IV 10/04. One month 5FU, leucovorin and Avastin, Colon resection and liver resection and ablation 12/04, resumed chemo till 7/05. Cancer returned in 10/05 abdomen and chest. It has progressed very slowly and now there are lung nodules. John has tremendous pain that no one can explain and the chemo seems to help. There is clinical proof now that there is a correlation between the severity of the rash and its effectiveness. John's rash was one of the worst ever seen--high fever and hospitalized for it even. None of the traditional methods of controlling worked for him. He went to a dermatologist and very long story short, but soriatane and keflex have been the answer for him. It is amazing and dramatic how those meds control the rash and allow him to stay on the chemo. I will be happy to share more info and doctors names if you would like.
    The other main side effect is diarrhea, but John is on so many pain meds that their side effect of constipation kind of balances out with the chemo.
    Let me know if we can be of any help.
    Keeping you in my prayers.
    Mary Kay