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cjf2006
cjf2006 Member Posts: 83
edited March 2014 in Colorectal Cancer #1
I saw my onc today and the news was my CEA went up again. She feels the folfiri is not being effective. I get a scan next week. She wants me to do Erbitux. I'm getting to be okay with that after what others have shared. But she also thinks I need to go back on oxaliplatin. I only received 8 rounds of it last year because I got neuropathy pretty bad. It improved, but never went away. I really don't want to experience the pain and numbness ( a strange combination). She said she could give me a lesser dosage. I know it did a good job on the cancer before, but can my nerves handle a second hit? She said she would let me try the Erbitux with folfiri, but if it is ineffective, my prognosis is very poor.

This then becomes a quality versus quantity of life issue. I'd like input to help me with my decision-making. Thanks.

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  • Limey
    Limey Member Posts: 446 Member
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    Hi cj, whaqt a tough decision to make. I know because that is exactly what was offered to me recently. I could go back on folfox to see if it would help. for me, I choose not to because of the odds. I choose to jusice and to try to go alkeline. so far, the cancer is still progressing but no faster than when i was on chemo the last time. the prognosis is not good in the eyes of the doctor but screw them, Thgey have been wrong before why not now.
    This decision is so personal and can only be decided by you. I hope the answer jumps out at you. The most important thigs for me is that I spent as much happy positive time with my partner annd kids as possible. I may choose to try Erbitux tomorrow, but today, not so much.
    God bless you kiddo
    Mark
  • hopefulone
    hopefulone Member Posts: 1,043 Member
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    Hi. I'm so sorry you are faced with such a tough decision. I agree with Mark that it's a decision you must make. Sometimes you need to go with your "gut". Is trying the oxal with a lower dosage and if you can't tolerate it, switching an option? I'd be sure to ask that question if you haven't already. Good luck and God Bless
    Diane
  • cjf2006
    cjf2006 Member Posts: 83
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    Limey said:

    Hi cj, whaqt a tough decision to make. I know because that is exactly what was offered to me recently. I could go back on folfox to see if it would help. for me, I choose not to because of the odds. I choose to jusice and to try to go alkeline. so far, the cancer is still progressing but no faster than when i was on chemo the last time. the prognosis is not good in the eyes of the doctor but screw them, Thgey have been wrong before why not now.
    This decision is so personal and can only be decided by you. I hope the answer jumps out at you. The most important thigs for me is that I spent as much happy positive time with my partner annd kids as possible. I may choose to try Erbitux tomorrow, but today, not so much.
    God bless you kiddo
    Mark

    I'm leaning toward not trying oxaliplatin because, unlike the other stuff, the side effects are more permanent. I could try Erbitux and if I quit it, the rash goes away. Plus oxaliplatin gave me sores on my scalp, neck and chest anyway. It hurt to comb or brush my hair. I don't like the idea of adding the two rashes/breakouts together.
  • cjf2006
    cjf2006 Member Posts: 83
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    Hi. I'm so sorry you are faced with such a tough decision. I agree with Mark that it's a decision you must make. Sometimes you need to go with your "gut". Is trying the oxal with a lower dosage and if you can't tolerate it, switching an option? I'd be sure to ask that question if you haven't already. Good luck and God Bless
    Diane

    If I try it and damage is done, the damage doesn't completely go away. It's been over a year since I had oxaliplatin, and I still have neuropathy issues with my hands and feet.
  • pamness
    pamness Member Posts: 524 Member
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    my heart goes out to you. I had a horrible time with oxaliplatin. The took me off after 5 rounds. I was stage IIIA and as of now, am ned. The neuropathy started for me fairly early on, it's OK now, but could have been much worse. It is a personal decision. You have all my best wishes.

    Pam
  • PGLGreg
    PGLGreg Member Posts: 731
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    Well, here's some input: do what your oncologist recommends. Let her do her best to save your life.
    -Greg
  • laura1971
    laura1971 Member Posts: 3
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    I am so sorry. My mom had been given the same news last week. Her CEA doubled in 2 weeks. She has been on Folfiri w/ avastin since Oct '07. She started in Aug '07 woth Oxal.., but that didn't work on the tumors. Erbitux is the next step but the doctor wants to wait until her Cea jumps up another 200 points.?.? We don't know what the "right" thing to do is. I pray you find the best choice for you.