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  • Round 14 Folfiri done, CEA @ 2.7 - Remission!

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    Old 04-23-2008, 05:05 PM   #1
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    Round 14 Folfiri done, CEA @ 2.7 - Remission!

    I am officially in remission, 10 months post diagnosis stage 4 colon cancer, mets to lungs and liver.

    I am getting treatment at The City of Hope in So Calif. I had a conversation with my Dr today and would like to get some opinions from people in my situation.

    She posed 2 options for me:

    1: Conitnue with chemo every 2 wks to keep the cancer from growing. As my body adapts to the chemo and the cancer becomes resistant, switch to Erbitux. Basically, continue chemo indefinetly.

    2: Discontinue chemo, CT scans every 2 months, if the cancer starts growing, then continue chemo.

    This is what I don't understand: if I am in remission, why would I have to continue with the chemo? If the cancer becomes resistant to the chemo, then wouldn't it help to not overload the chemo so the cancer doesn't become resistant? (ie: too many antibiotics and your body will not respond to them.)

    She also told me today that 60-70% of patients DO NOT do as well as I have. I am 47, diagnosed at 46. She was very surprised to see my CEA drop lower than 3.9, where it was 3 weeks ago. My husband says to LISTEN TO THE DR and DO WHAT SHE SAYS. I'm not so sure about that...I mean, Dr's arent' God. I should have some say so in my treatment?

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    Old 04-24-2008, 08:34 AM   #2
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    Re: Round 14 Folfiri done, CEA @ 2.7 - Remission!


    First of all, I do NOT agree with your husband. Not meaning any offense here, but he is not the one undergoing treatment. This is YOUR body, not his nor the doctors. I am a FIRM believer in the idea that the patient is a PARTNER in every aspect of his/her care. Had I listened to everything the doctors said and wanted to do, I would probably still be here but be here as one unhappy and most likely depressed person. I was my own advocate and with the support of my husband, had a say in my own treatment. No, I didn't go do anything stupid like taking peach pit pills-stayed with the normal chemo, radiation but I did things in a different order to accomodate what I wanted and to achieve the surgical option that was what I knew that I wanted and needed for me. Oftentimes I actually felt that the doctors were happy that I chose to go 'outside the box' as they got to think more and play around with options rather than just follow the traditional recipe of chemo, radiation and surgery. So, you be a part in this and do what you feel is best for you all around.

    My guess is that her reason for giving you the option to continue chemo is that there are problably microscopic cells/mets out there and she just wants to keep them at bay. That being said, there is NO way to know what is out there. You are going to have to weigh any potential benefit from chemo against the quality of life issues that go along with it. If your onc is willing to go the scan every two month route, why not give that a try at two month intervals. Obviously that is not an indefinite plan. In other words, if you get scanned at the end of June and nothing is there, then you make the decision again what to do. You can always change your mind. Suppose you decide now to take the wait and see approach and between now and June you just get a bad feeling. Then even if the scan doesn't show anything you can ask her about getting more chemo.

    Another option which you didn't mention and might be worth mentioning to your onc is to stay on the oral form of 5FU (at a lower dose and which usually has very little side effects)- Xeloda - and still take the two month approach. I was on Xeloda alone for 5 months and really didn't have any problems. However, each person is different so you might get some minor things. It's worth asking about. That way, you could sort of get the best of both worlds-a little chemo, but certainly not the big guns, and a better quality of life.

    Whatever you decide, you need to make sure that it's YOUR decision and one that you feel comfortable with. If you do nothing and something shows up down the road, will you be ok with that? If you continue the chemo and nothing ever shows up, will you be unhappy that you did the chemo, possibly for nothing? You have really got to think about down the road and how you will feel. I say go with your gut feeling-you know your body better than anyone else. You know what your body can and cannot handle and only you know your emotional health and well being from that aspect. Talk with your onc about a compromise (if this appeals to you) with Xeloda and see what he/she says. Good luck.

    Old 04-24-2008, 10:42 AM   #3
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    Re: Round 14 Folfiri done, CEA @ 2.7 - Remission!

    THANK YOU for this response. You totally put everything in perspective for me.

    I told my husband last night that this is MY body and he has no idea what I'm putting myself through with chemo every 2 weeks. The thought of having to do that makes me sick. My opinion is to get a 2nd opinion from another Dr. My gut is telling me to hang with the CT scan every 2 months. I have 3 boys here at home: 14, 12, and 9. There is NO WAY I can deal with them and chemo. They drive me crazy enough as it is, I don't need to be inundated with chemicals that are poisoning me at the same time.

    I have a call into my onc to discuss further treatment. I have scheduled my next chemo for next week, I'm thinking of canceling it and going the Xeloda route, if she agrees to it.

    Not only am I dealing with cancer, but Feb 8th, I fell and broke my right humurous. (Upper arm bone). This has been worse than any chemo. I have physical therapy 3 times per week. And of course, I'm right handed. When I have chemo, then dealing with my arm, I'm down even longer. I wore a cast for 8 wks and could do basically NOTHING. All I did was sit there. So now that my cast is off, my arm is healing, my cancer is in remission, the thought of continuing chemo is something that I DO NOT WANT. I need to get some part of my life back to normalcy or I feel like I'm going to loose it.

    I'll post again when I've made my decision.

    Thanks Jaynee.

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