dammit ... not happy

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Comments

  • AnneCan
    AnneCan Member Posts: 3,673 Member
    Sorry Lori
    I know this is stressful; the wondering what is going on. I hope that is a "blip" + nothing to worry about. If it turns out this chemo isn't doing the job they can switch you; that is really what these tests are about; making sure they have you on the right treatment + switch things up as appropriate. Then you could be in the "Folfiri" club with me! I am thinking of you!
  • Annabelle41415
    Annabelle41415 Member Posts: 6,728 Member
    Sorry
    Sorry you didn't get better tests results. Hoping that the chemo goes well and your oncologist and give you some positive news.

    Kim
  • newperson
    newperson Member Posts: 76
    Sending good vibes to you
    Lori, I'm sorry for your rising CEA. I really hope that the number doesn't really mean anything. But It does worry you. I would be very worried, too. Since it's rising even when you are on chemo, I would wonder if the chemo is working for you or not. The best way to tell is through scan. My husband has been fighting his recurrent rectal cancer for the past two years. When he started the chemo in Aug. his CEA was 400's. It kept rising during the chemo, finally the PET scan on Nov. 5 confirmed that the chemo didn't work for him. His cancer just had progressed badly. We shouldn't have waited that long to get the scan, then stopped the chemo. So it would be good to ask your doctor to get a scan as early as possible. I'm sending my good vibes to you. - Lucy
  • coolvdub
    coolvdub Member Posts: 408 Member
    newperson said:

    Sending good vibes to you
    Lori, I'm sorry for your rising CEA. I really hope that the number doesn't really mean anything. But It does worry you. I would be very worried, too. Since it's rising even when you are on chemo, I would wonder if the chemo is working for you or not. The best way to tell is through scan. My husband has been fighting his recurrent rectal cancer for the past two years. When he started the chemo in Aug. his CEA was 400's. It kept rising during the chemo, finally the PET scan on Nov. 5 confirmed that the chemo didn't work for him. His cancer just had progressed badly. We shouldn't have waited that long to get the scan, then stopped the chemo. So it would be good to ask your doctor to get a scan as early as possible. I'm sending my good vibes to you. - Lucy

    Sending you some powerful vibes
    Lori,

    I know how you must be feeling, but try and focus on the good things going on in your life. It can be difficult, but I'm sure you can find some sort of diversion for now. In the end worrying can cause you more pain than not, so please try not to worry. I will be sending some extra powerful vibes your way.

    Don
  • abmb
    abmb Member Posts: 311
    Lori-S said:

    Thanks everyone
    I am scheduled for scans in January. the onc has told me that he expects the CEA to go up before showing on scans that is why we are waiting to do the scans .. that and to see any difference chemo might make. It's just that it worries me more now about what everyone is calling my bone "spots" with the continuous increase. And I have 2 "suspicious" lymph nodes near my liver as well. Oh well. We shall wait and see. I hate waiting.

    OH! And I lost 5 lbs over the holiday eventhough I ate like a piggy.

    Waiting
    I think waiting is the worst. All of you have gone through so much, I can't even imagine what you think when you get news like that. I am my husband's caregiver and I know I worry all the time and he is NED. I would probably ask if you could have the scan sooner than later, but that is me. I will keep you in my thoughts & Prayers. God Bless. Margaret
  • plh4gail
    plh4gail Member Posts: 1,238 Member
    John23 said:

    Numbers.....

    Personally, I think it's better not to ask or look at "numbers"
    and test results. We didn't know what they were prior to cancer,
    and we didn't worry about them prior to our diagnosis, so
    why now?

    We oughta' gauge our health on how we feel, not how they tell
    us we should be feeling. If you feel healthy, eat, drink, be merry,
    and live life.

    So we have cancer, big deal. We should do what makes us feel
    healthiest...... and.... eat a well rounded diet to help our immune
    system do it's thing.

    Demanding that a doctor tells us the exact reason for the numbers
    on reports, or demanding an accurate prognosis, is a great lesson
    in futility. They have absolutely no way to tell if you're going to
    take a major turn for the worse, or a major turn for the better.

    Just look around this board..... how many have been told that
    their days were numbered, and have outlived their prognosis by
    years? How many have been told that they're "NED", and are
    shattered to learn a few months later, that the cancer is still at it?

    Did worrying about numbers help those in either group?

    Live life, and take the days as they come. Be as healthy as
    you feel, and you just might be healthier for it!

    Really!

    John

    John
    I second Lori's you are sooo right. Sometimes I get so caught up in "my stuff" that I forget to wake up and live each day for it's wonderful value. Thank's to you!

    Gail
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    coolvdub said:

    Sending you some powerful vibes
    Lori,

    I know how you must be feeling, but try and focus on the good things going on in your life. It can be difficult, but I'm sure you can find some sort of diversion for now. In the end worrying can cause you more pain than not, so please try not to worry. I will be sending some extra powerful vibes your way.

    Don

    Lori cheer up my dear!
    When did you have your last scans?, what they show?Cheer up,and a big HUGGGG!.
  • Lori-S
    Lori-S Member Posts: 1,277 Member
    pepebcn said:

    Lori cheer up my dear!
    When did you have your last scans?, what they show?Cheer up,and a big HUGGGG!.

    Pepe
    It's only been about 6 or 7 weeks since last scan. It showed larger lymph nodes near my liver and the 2 spots, one on the spine and one on the pelvic bone. The spots were the same as the previous scan but, the lymph nodes were larger than the scan 3 months before. It's OK. It is what it is and we're working on it. Everyone who sees me says I look great. If I looked how I feel, I'd really scare them. I'd be walking around like a night of the living dead extra on the movie set ... zombie. So that's a good thing ... don't want to scare the little kids. I'm tough ... I can fake feeling good if I have to. HA!

  • sharpy102
    sharpy102 Member Posts: 368 Member
    Lori-S said:

    Pepe
    It's only been about 6 or 7 weeks since last scan. It showed larger lymph nodes near my liver and the 2 spots, one on the spine and one on the pelvic bone. The spots were the same as the previous scan but, the lymph nodes were larger than the scan 3 months before. It's OK. It is what it is and we're working on it. Everyone who sees me says I look great. If I looked how I feel, I'd really scare them. I'd be walking around like a night of the living dead extra on the movie set ... zombie. So that's a good thing ... don't want to scare the little kids. I'm tough ... I can fake feeling good if I have to. HA!

    !
    Hey Lori,

    I know this may not help you at all, but sometimes CEA isn't the best indicator, as it can go up due to the lysis of cancer cells. As they die due to chemo, they "break open" and release all the material they have inside. Some of them are stuff that healthy cells can "eat" as food but some of them are materials that are "foreign" and your immune system's responds to these by raising bunch of antibodies and granulocytes to "fight off" the "foreign" (or "enemy"). This causes a sort-of "inflammation" in your body where everything turns to off-guard to make sure they can protect you and that causes the CEA level to increase too. I know this might not make you feel better but even after a surgery people tend to have a significantly higher CEA level than they went in for surgery. It should decrease over time...if by January, when your scan is going to be, it climbed up higher than right now (15) then you should be worrying even if the scan shows nothing. And if you have a NORMAL oncologist then he/she should change your treatment regime immediately. Wish you the best, until then enjoy the upcoming holidays and don't worry over it. Not because it's nothing to worry about, but also because worrying is a sort of stress that makes you release chemicals that weaken your immune system and "help" the cancer...now, who wants that?! They should ALL DIE!!!
    Take care,
    Sophie

    Ps: how did you make that smiley? It's sooooooooooo cool! :) Teach me! :)