calling (dr.) phil(lieg)

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serrana
serrana Member Posts: 163 Member
edited March 2014 in Colorectal Cancer #1
Sorry for the repeat question( chemo brain here) but now that I am done w/ my crc met to the lung thoracotomy the oncs are going to give me the menu of what is next.They are making noises about erbitux or some kind of focused radiation. Being compulsive I want to know everything ahead of the game and want to revisit the erbitux question before they talk to me about it....soooooooo......how long have you been on it? how long were you on it with cpt-11? is it mixed with anything now ( 5FU etc?)? how do you get/take it? how often are you scanned? What can you tell me about the focused rads? (I just finished 6 months of Avastin Folfiri and when I stopped 3 months later the new spots appeared)
Serrana

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  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #2
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    Hi Serrana
    To answer your questions:
    * 3 1/2 years
    * 3 years
    * just CPT11
    * Normal infusion
    * every 2 months
    * never had radiation
    :-)

    Serrana, I've been on the Erbitux probably 3 1/2 years like I mentioned above. I guess around the new year they cut out the CTP11 because it was getting to be too much. I get/got a lot of stomach cramping from it and I had enough so she gave me a break from it and the Erbitux alone seems to be keeping things stable. Since the get go, I've had CT scans every 2 months. That's still the case. I have never had any radiation although we did briefly talk about it as an option of things start to take off again. I really know nothing about it at all though.

    I am sorry to hear about the spots, that seems to be how my journey has been too. I'm fine while on the treatment but with any break, things start to grow. You can do a search on side effects of Erbitux on here, the rash is rough at first but over time it does lessen. I'm on a very reduced treatment schedule now, one month on, one month off and the month I'm on it's every other week so I have been having 6 weeks of no treatment at a clip. It's good that you have Erbitux as an option, some folks don't. I have heard people say that the rash means it's working, which I understand is true, but also the lack of the rash does not mean it isn't working.

    I hope this helps Serrana,
    -p

    PS: I just saw this post about radiation, it's not focused radiation I think but it still has some great info
    http://csn.cancer.org/node/174179
  • serrana
    serrana Member Posts: 163 Member
    #3
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    PhillieG said:

    Hi Serrana
    To answer your questions:
    * 3 1/2 years
    * 3 years
    * just CPT11
    * Normal infusion
    * every 2 months
    * never had radiation
    :-)

    Serrana, I've been on the Erbitux probably 3 1/2 years like I mentioned above. I guess around the new year they cut out the CTP11 because it was getting to be too much. I get/got a lot of stomach cramping from it and I had enough so she gave me a break from it and the Erbitux alone seems to be keeping things stable. Since the get go, I've had CT scans every 2 months. That's still the case. I have never had any radiation although we did briefly talk about it as an option of things start to take off again. I really know nothing about it at all though.

    I am sorry to hear about the spots, that seems to be how my journey has been too. I'm fine while on the treatment but with any break, things start to grow. You can do a search on side effects of Erbitux on here, the rash is rough at first but over time it does lessen. I'm on a very reduced treatment schedule now, one month on, one month off and the month I'm on it's every other week so I have been having 6 weeks of no treatment at a clip. It's good that you have Erbitux as an option, some folks don't. I have heard people say that the rash means it's working, which I understand is true, but also the lack of the rash does not mean it isn't working.

    I hope this helps Serrana,
    -p

    PS: I just saw this post about radiation, it's not focused radiation I think but it still has some great info
    http://csn.cancer.org/node/174179

    erbitux and phil
    Thanks so much Phil You are an inspiration to me
    It seems that after I got the "spots" ( mets) my peers changed their attitude and even tho they know very little about chemo/cancer etc they are encouraging me not to have any more chemo. I appreciate your story so I know that there is a long but ok road ahead and not a fast track to hospice.
    Bless you, you are a gem
    Serrana

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