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Medical support when in remission?

SOPHIE333
SOPHIE333 CSN Member Posts: 92
in Peritoneal Cancer #1
Hi all,
what are your experiences from being in remission? Besides monitoring your overall wellbeing and CA125, are you given any hormones or other medical treatment to keep stability (i.e to prevent cancercells from growing)? Steroids? Other food restrictions?

Thank you,
Sophie
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Comments

  • Tina Brown
    Tina Brown CSN Member Posts: 1,036 Member
    #2
    Hi Sophie
    I've been in remission twice now and all they do is monitor your CA125. I wish there was something they can give up to stop the cancer growing but unfortunately this has not been invented yet.

    Take care and I hope you stay in remission a long time

    Tina xxxx
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  • AussieMaddie
    AussieMaddie CSN Member Posts: 345 Member
    #3
    Hi :)
    Sorry I can't add to what Tina has said. When I was in remission, the only thing they did was to monitor my CA125. When that went up to 6.000 and I started to be symptomatic, that's when we started on another chemo.

    Same story over and over. Nothing new, sad to say.

    AussieMaddie
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  • wanttogetwellsoon
    wanttogetwellsoon CSN Member Posts: 147
    #4
    what remission is...
    Hi Sophie...
    I can't really say what remission is only how it was explained to me by my specialist nurse recently. She told me that the term remission is not really used any more. If the cancer cells don't appear to be active then a patient's condition is said to be stable. The term remission is sometimes still used when children have cancer it seems. Maybe 'stable' better illustrates where the cells are at. I don't have an elevated CA125. It's very often in the low normal range. I get worried that my cancer is coming back. If I put my jeans on and I can't zip them up,(which is quite often)then I think the fluid is building up. It's horrid how it's hard to pick up the symptoms even once a patient is in treatment. My nurse has said that I'll know when I'm not well and when I told her that the worry for me is that it won't be caught in time and more damage will be done, she said that there's evidence to show that starting chemo again before the symptoms are really showing (and just working on elevated CA125 levels)can mean that it's not the optimum time for treatment to start and an opportunity has been missed. I haven't been given any hormone treatment but maybe that's just how my cancer is being treated. I know when symptoms did start to really show earlier this year, I felt ill in my whole self and not just in my abdomen. I've told myself that I will know when I start to get in that situation again, but like many people with this condition, I think the not knowing is hard to deal with. :)
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  • LaundryQueen
    LaundryQueen CSN Member Posts: 676
    #5
    wanttogetwellsoon said:

    what remission is...
    Hi Sophie...
    I can't really say what remission is only how it was explained to me by my specialist nurse recently. She told me that the term remission is not really used any more. If the cancer cells don't appear to be active then a patient's condition is said to be stable. The term remission is sometimes still used when children have cancer it seems. Maybe 'stable' better illustrates where the cells are at. I don't have an elevated CA125. It's very often in the low normal range. I get worried that my cancer is coming back. If I put my jeans on and I can't zip them up,(which is quite often)then I think the fluid is building up. It's horrid how it's hard to pick up the symptoms even once a patient is in treatment. My nurse has said that I'll know when I'm not well and when I told her that the worry for me is that it won't be caught in time and more damage will be done, she said that there's evidence to show that starting chemo again before the symptoms are really showing (and just working on elevated CA125 levels)can mean that it's not the optimum time for treatment to start and an opportunity has been missed. I haven't been given any hormone treatment but maybe that's just how my cancer is being treated. I know when symptoms did start to really show earlier this year, I felt ill in my whole self and not just in my abdomen. I've told myself that I will know when I start to get in that situation again, but like many people with this condition, I think the not knowing is hard to deal with. :)

    When to start treatment
    WTGWS: you wrote "... I told her that the worry for me is that it won't be caught in time and more damage will be done, she said that there's evidence to show that starting chemo again before the symptoms are really showing (and just working on elevated CA125 levels)can mean that it's not the optimum time for treatment to start and an opportunity has been missed."

    I'm confused. What opportunity has been missed? Do you mean the opportunity to take chemo later when you became symptomatic? Since you have the history of bowel obstructions, would you want to wait until you had that problem again?

    I had a rising CA-125 without symptoms for 4 months. I went to a Mexican cancer clinic for treatment that only slowed the progression of the diease--I couldn't afford to stay long enough to become stable. Now that I am doing chemo again, I think I have a lot of implants on my sigmoid colon--at least that's where my discomfort is as the tumors die off. I hope I didn't wait too long to begin treatment.

    I find that I have to work to distract myself from worrying about all the "what ifs." The worry is more disabling than the cancer.
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