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laurettas
laurettas Member Posts: 372
in Colorectal Cancer #1
My husband is a month or so away from finishing his first 12 treatments of chemo for stage four cc. The onc is thinking about just stopping treatments for awhile and seeing what happens. For those of you who have done this, what sort of checkups did you get during your off time? I have read several stories of people who have gone from NED to being full of cancer in six weeks so I am concerned about much of a break from checkups. Would asking for a CEA check every two weeks or so be out of line?

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  • yoga
    yoga Member Posts: 87
    #2
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    taking a break
    Hi there,

    I have just finished 27 chemos for my stage IV CC. After 12 I had to miss a treatment because my neutrophils were low - now on Neulasta. After 24 I took a break and missed 2. The only thing that happened was that the CT scan showed my cancer had stopped shrinking and showed 'stable' just before I started 25. Don't know whether this was a result of missed chemo or just that no more shrinkage will happen. I am planning on missing one or even two again when I finish 36. It felt so incredibly good to feel "normal" for even a brief time - I would say it was worth it, but for me I wouldn't miss more than two. I imagine you will hear from others who miss up to three months without any problems. I have not been able to have any surgery so didn't want to miss too many treatments.

    My doctor doesn't do CEA counts - he feels that while we know there is quite a bit of cancer he sees no point in it. I am fine with this.

    Keep strong and have faith in what your husband's body can do!
    yoga jo
  • mukamom
    mukamom Member Posts: 402
    #3
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    Robert
    always had monthly appt with onc during his break, CEA checked then, scan every 3 months (on chemo or not). His longest break from chemo was Oct '10 to Feb '11, and during that time his CEA rose, and a new lesion was found on his liver. Not the best news to give you, but everybody is different.

    Enjoy the break!!

    Angela
  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
    #4
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    yoga said:

    taking a break
    Hi there,

    I have just finished 27 chemos for my stage IV CC. After 12 I had to miss a treatment because my neutrophils were low - now on Neulasta. After 24 I took a break and missed 2. The only thing that happened was that the CT scan showed my cancer had stopped shrinking and showed 'stable' just before I started 25. Don't know whether this was a result of missed chemo or just that no more shrinkage will happen. I am planning on missing one or even two again when I finish 36. It felt so incredibly good to feel "normal" for even a brief time - I would say it was worth it, but for me I wouldn't miss more than two. I imagine you will hear from others who miss up to three months without any problems. I have not been able to have any surgery so didn't want to miss too many treatments.

    My doctor doesn't do CEA counts - he feels that while we know there is quite a bit of cancer he sees no point in it. I am fine with this.

    Keep strong and have faith in what your husband's body can do!
    yoga jo

    Hi there Yoga Jo, when you
    Hi there Yoga Jo, when you say you haven't been able to have surgery do you mean no surgery at all, or no surgery on mets??? Sorry, I just get confused when someone says they haven't had surgery and I wonder if they just mean for the mets.
  • laurettas
    laurettas Member Posts: 372
    #5
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    mukamom said:

    Robert
    always had monthly appt with onc during his break, CEA checked then, scan every 3 months (on chemo or not). His longest break from chemo was Oct '10 to Feb '11, and during that time his CEA rose, and a new lesion was found on his liver. Not the best news to give you, but everybody is different.

    Enjoy the break!!

    Angela

    Thanks for all the comments.
    Thanks for all the comments. My husband is wearing down from the chemo and its side effects so I think he needs a little time off. This will be the first time he has done that so makes one a little nervous! Don't know how that nasty beast will react when it isn't under constant assault!
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #6
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    Hi
    I don't have answers for you. Just want to say that I'm praying for you and your husband.

    *hugs*
    Gail
  • steveandnat
    steveandnat Member Posts: 886
    #7
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    Maybe short break
    I know what your husband is going through wanting to take a break. I didn't have surgury either and suppose to get chemo every two weeks. First treatment Jun 09. There have been a few times I had to skip a treatment because of counts being off. The longest was three weeks and that extra week was great. There wasn't any change in the the tumor either but I really started to worry if I went much longer. I get CEA and scans every three months. I think short breaks help the mind and sole...which is worth a lot!! Thinking of you/
    Jeff
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #8
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    Laurettas
    Laurettas

    If your husband is so close now, you might want to consider putting your foot on the gas and not the brakes.

    Can't remember if you're doing the Oxy or the Irinotecan.

    If a break were in order, perhaps a week or two then resume. He's already paid the price for this fight, so I personally would not let up with the goal so close in sight. Better to fight this one out long and hard right now - then see where you are at.

    Just an opinion...

    As for the stories of NED to full of cancer in 6-weeks...keep in mind that NED really just means "no evidence of disease Today." By definition, we all have to go 5-years with no recurrences to be considered in remission or NED - by the numbers.

    So, these folks may have had their cancers disappear under the radar and out of the CT and PET scanners sight for that moment in time - only to return and grow big enough to be detectable.

    It's important to keep in mind that even if nothing is seen on a scan, it's not an absolute by any means - it only means that it is small enough not to be detectable with the tools that mankind currently employes today - nothing more and nothing less.

    As for CEA, this can be a misleading marker at times as well. When my cancer was in my liver, my CEA was a pretty reliable gauge on where I was at.

    I was "so smart" that I figured I could measure my cancer through bloodwork and CEA markers when it went to my lung. I registered a 0.7 and thought I was ok - little did I know that a raging tumor was literally doubling in size every 8-weeks...

    Of course, you can request bloodwork, but keep in mind that what lies inside may or may not indicate what is really going on.

    He's this close to finishing....I vote for finishing the treatment and fighting this round like it will be your last one - and then re-evaluate after the completion of chemo and the subsequent CT scans that would be forthcoming upon said completion.

    -Craig
  • tommycat
    tommycat Member Posts: 790 Member
    #9
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    I'm with Craig on this
    I'm with Craig on this one----you have come this far: Finish it! Then you'll get a much-needed break and can have the bloodwork done to keep you mind at ease.
    Don't quit now. You've come too far.
  • here4lfe
    here4lfe Member Posts: 306 Member
    #10
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    Follow your doctor's advice
    Your onc is in-touch with your husband's progress, so I would follow his advice, as everyone's case is different.

    I believe my wife's was checked once a month during maintenance chemo.

    Best
  • buckeye2
    buckeye2 Member Posts: 428 Member
    #11
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    My husband is on almost the
    My husband is on almost the same time line as yours. He will be getting I think treatment 10 tomorrow and also getting report back from scan on Friday. I don't know if I will every get used to living every day in fear. Lisa
  • laurettas
    laurettas Member Posts: 372
    #12
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    buckeye2 said:

    My husband is on almost the
    My husband is on almost the same time line as yours. He will be getting I think treatment 10 tomorrow and also getting report back from scan on Friday. I don't know if I will every get used to living every day in fear. Lisa

    Again
    Thanks for all of the great comments. We do plan to finish with this session of chemo on time. He has three more treatments to go before he is finished with six months. It is after that that I was wondering about. Our doctor says that he kind of likes to just take a break for a while and see what happens. Just makes me a little nervous after reading some of the stories about the NED to full of cancer in a few weeks. Plus Jake's cancer is signet ring cell which tends to be more aggressive and faster progressing than normal.

    Got his CEA count today and it is 10 after four months of treatments. His high was 40 right after surgery. That is with FOLFOX for three months, two months of Avastin and one month of FOLFIRI and two treatments of Erbitux.

    Another question for all of you. Jake just had two infusions of Erbitux, the last of which was two weeks ago and his face is still terribly broken out. Is that normal? He is taking an antibiotic as well as using a topical ointment. We backed off on the topical for a couple of days because his face was so dry that his nose was bleeding but as soon as we did the pustules came back in full force. Can't seem to quite get the right balance yet.

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