Chemo - when does it end?

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musiclover
musiclover Member Posts: 242
edited March 2014 in Colorectal Cancer #1
My friend Mark is on a clinical trial of Xeloda, Avastin and Oxy. On a trial, there is no discussion of when it stops - it continues until it either stops working, starts reversing or until the patient themself decides to stop. Question - for those of you on "regular" chemo, you are given a finite amount of time, correct? In other words the doctor says 3 months, 6 months, whatever. At the end of that period does the chemo stop regardless of whether there are tumors still present? Is this a resting period for the body to regroup and possibly be put back on more chemo?

I'm confused about the trial, how the doctors just administer the drugs until the patient can't take it anymore. Any thoughts would be so appreciated. Mark had his third scan yesterday. The first showed good shrinkage, the second showed some tiny shrinkage AND some growth in lung tumors as well as a mysterious fluid in the "abdominal area" (no one could explain that). The third should really make it clear whether this is working or not.

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  • spongebob
    spongebob Member Posts: 2,565 Member
    #2
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    Ahoy, Musiclover -

    Good to hear from you again - missed you on the board here and was wondering how Mark is doing. Good news about some of the tumors shrinking - that's encouraging. Also good to know that he's on a clinical trial.

    I missed the window for clinical trials when I was in chemo so I can't really comment on the protocol.

    keeping you guys in my thoughts and prayers.

    - SpongeBob
  • Betsydoglover
    Betsydoglover Member Posts: 1,248 Member
    #3
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    Hi Kathryn -

    I don't know the specifics of this trial, but when you are Stage IV, docs don't give you a specified "end" to chemo. It all depends upon response to the chemo and side effects. That frustrated me - I ended up having just 6 cycles and when we had the last one it was characterized as a break - probably for about 3 months - but my scans have been good since, so the break continues. But it's not like Stage III where the chemo is considered "adjuvant" and usually goes on for a set period.

    So, hard as it is, it is probably not possible to know an end date right now, even apart from whatever the clinical trial rules are. As you know, this drug combination is standard - the trial Mark is in has some nuances, but still not hugely different from standard Stage IV treatment. So, it does not surprise me that there is no clear end point - but so good to know that Mark's disease is responding.

    Take care,
    Betsy
  • tennislover
    tennislover Member Posts: 64
    #4
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    Hi there, I wish I had mroe to say but my info is a lot like Betsy. I am stage IV and I was supposed to be on only for 6 months but when they found the mets in my lungs they changed it from 6 months to "when the cows come home", thats what I was told. Monday when I met with my doctor he told me that when and if I get to a place where my CEA level is normal they will look and see if I can take a "chemo break" for 3 months they will monitor what my tumors do. I was thinking that i was going to need surgery right away but I guess this changes from week to week. If only we could predict what these stupid tumors were going to do! Good luck!
  • TheBean
    TheBean Member Posts: 9
    #5
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    Unfortunately I have the same info - it ends when the cancer is considered gone or the drug is no longer working or the patient stops. I am stage IV also, with metz to the liver and have been on chemo since May 2005. I have done 3 different combos - all worked at first, then not so much. I am now having some growth in one of the liver tumors and my doctor is looking into a trial for me or some other possible options. I feel like - as long as I don't get too sick from the chemo, I'll keep going. Hang in there.
  • musiclover
    musiclover Member Posts: 242
    #6
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    TheBean said:

    Unfortunately I have the same info - it ends when the cancer is considered gone or the drug is no longer working or the patient stops. I am stage IV also, with metz to the liver and have been on chemo since May 2005. I have done 3 different combos - all worked at first, then not so much. I am now having some growth in one of the liver tumors and my doctor is looking into a trial for me or some other possible options. I feel like - as long as I don't get too sick from the chemo, I'll keep going. Hang in there.

    Thanks all. Tennislover and thebean have given me hope. Mark is down to 119 lbs again, soo skinny. I've been very busy but plan to up the cooking to fatten him up again. Overall he seems to be in decent spirits, a little tired and we'll just see what the doctor says on Tuesday about this last scan. Thanks so much for being there. Kathryn
  • CAMaura
    CAMaura Member Posts: 719 Member
    #7
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    There should be a Clinical Coordinator -- a person who interfaces with the patients much more than the docs. Find out who this person is and ask lots of questions; and if Mark is uncomfortable or having strange side effects, please advocate for him. Allt he best to you - Maura
  • jana11
    jana11 Member Posts: 705
    #8
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    Hi there. I am stage 4 also and on chemo. There is no end date for me. As my onc told me, one step at a time. You get scans routinely and continue chemo until a change is needed. Mark can ask the docs if the trial has an end date, but I wouldn't be surprised if there isn't one.

    Unfortunately, there are no definates in the sad stage 4 world. One day at a time takes on new meaning. Keep asking questions to the docs and let them know immediately if there are ANY problems.

    Tell Mark we are with him... and you too. jana

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