CA 125 up to 19900 while on doxil

Acosta1027
Acosta1027 Member Posts: 3
in Ovarian Cancer #1
I'm freaking out! My ca 125 is 19,900 and I've been on doxil since dec. I had liver rfa in august in attempt to treat 2nd recurrence (ca 125 was 60). Had liver rfa and when checked in oct. It was 10000. Dr. decided to wait and recheck - it was even higher so we started doxil and it started coming down getting as low as 140 then next month 260 then 6600 and this week's 19900. My ct in may showed some decrease in size in one liver lesion and no change in the other. Just had MRI last night. Has anyone ever heard of anything like this happening? I was dx in Jan 07 at 43 ( stage iiic) and had 18 month Ned after first chemo. Had 10 month Ned after 1st recurrence and still on this 2nd one that we've been trying to treat since august.

JoAnne

Comments

  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #2
    High CA 125
    Hi JoAnne

    My CA125 never went as high as yours but it does go up while my CT scan shows no progression. My onologist is puzzled by my rise in numbers. I do go on doxil (Caelyx here in the UK) and while I was on it I got fluid in my lungs so it didn't work for me and my oncologist took me off it.

    Tina
  • LaundryQueen
    LaundryQueen Member Posts: 676
    #3
    Tina Brown said:

    High CA 125
    Hi JoAnne

    My CA125 never went as high as yours but it does go up while my CT scan shows no progression. My onologist is puzzled by my rise in numbers. I do go on doxil (Caelyx here in the UK) and while I was on it I got fluid in my lungs so it didn't work for me and my oncologist took me off it.

    Tina

    What does it mean?
    JoAnne: the CA-125 goes up & down for various reasons. One of my doctors explained that the CA-125 will go up with ascites or if there is a lot of tumor destruction going on. I guess that's why they keep watching it in the the hope that they can learn something about what is going on. Some oncologists base their therapy more on the scans & how symptomatic the woman is.

    If you have an intestinal problem, that will also make the CA-125 go up.

    (((hugs)))

    LQ
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    #4
    LaundryQueen said:

    What does it mean?
    JoAnne: the CA-125 goes up & down for various reasons. One of my doctors explained that the CA-125 will go up with ascites or if there is a lot of tumor destruction going on. I guess that's why they keep watching it in the the hope that they can learn something about what is going on. Some oncologists base their therapy more on the scans & how symptomatic the woman is.

    If you have an intestinal problem, that will also make the CA-125 go up.

    (((hugs)))

    LQ

    I think liver mets really drive those CA125 numbers up & up.
    I have mets to the liver and my last CA125 was 8500, taken a couple months ago. God only knows what it is now! I don't want to know, as I'm doing all I can, treatment-wise. I think high CA125 must be the nature of liver mets. I don't have any liver pain, swelling or ascites. I am still symptom-free and feel great. So I think of it as "just a number", nothing I can do about it.

    You mentioned having ablation for your liver mets. If it turns out that your liver cancer is growing, please look into radioembolism. I had that June 1st to the right side of my liver where 90% of my liver mets are. In late July when I get back from the beach I will have the left side radioembolized. I was only miserable from it 3 or 4 days, and was 100% myself within a week. I won't know for several months if it worked, but radioembolism sure looks promising. It takes awhile to get insurance approval, so if it turns out that the mets in the liver are what is spiking that CA125, you want to get the radioembolism discussion going a good month before you need to do it.

    Anyway I didn't want you to think you were the only one with a CA125 in the stratosphere! Unless my June 1 radioembolism makes a difference (and I've read that the radioactivity associated with it makes CA125 and CT/PET scans completely unreliable for 3 months), I'm guessing my number is every bit as high as yours. And I feel fine. I know I'm NOT fine, but as long as I FEEL fine and am doing what I can to battle on, I am content. ((((hugs))))
  • Acosta1027
    Acosta1027 Member Posts: 3
    #5
    lindaprocopio said:

    I think liver mets really drive those CA125 numbers up & up.
    I have mets to the liver and my last CA125 was 8500, taken a couple months ago. God only knows what it is now! I don't want to know, as I'm doing all I can, treatment-wise. I think high CA125 must be the nature of liver mets. I don't have any liver pain, swelling or ascites. I am still symptom-free and feel great. So I think of it as "just a number", nothing I can do about it.

    You mentioned having ablation for your liver mets. If it turns out that your liver cancer is growing, please look into radioembolism. I had that June 1st to the right side of my liver where 90% of my liver mets are. In late July when I get back from the beach I will have the left side radioembolized. I was only miserable from it 3 or 4 days, and was 100% myself within a week. I won't know for several months if it worked, but radioembolism sure looks promising. It takes awhile to get insurance approval, so if it turns out that the mets in the liver are what is spiking that CA125, you want to get the radioembolism discussion going a good month before you need to do it.

    Anyway I didn't want you to think you were the only one with a CA125 in the stratosphere! Unless my June 1 radioembolism makes a difference (and I've read that the radioactivity associated with it makes CA125 and CT/PET scans completely unreliable for 3 months), I'm guessing my number is every bit as high as yours. And I feel fine. I know I'm NOT fine, but as long as I FEEL fine and am doing what I can to battle on, I am content. ((((hugs))))

    CA 125 in the stratosphere
    Well, since my last posting my CA 125 went down to 13,500 but back up to 38,000 before I started Taxol weekly 3 weeks ago. I had ascites accumulation and it was drained a couple of days before starting treatment but they could only get 1 1/2 liters out (hides in pockets of scar tissue???). But that 1 1/2 liters out gave me lots of relief! It's back again and I look 6 months pregnant. My doctor wasn't really crazy about draining again - he said I don't get much bang for my buck due to my scarred anatomy. But when I went in for chemo Friday, I was in tears and the nurses called him and he scheduled a parencentesis for tomorrow! I pray that they can get the optimal amount OUT and that the taxol will start keeping it from forming anymore.

    I am a teacher and although I have been fortunate that all these problems have popped up during the summer while I'm off, I'm very concerned that the start of school is only a couple of weeks away.

    Thanks for support!
    JoAnne
    Texas
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    #6
    Acosta1027 said:

    CA 125 in the stratosphere
    Well, since my last posting my CA 125 went down to 13,500 but back up to 38,000 before I started Taxol weekly 3 weeks ago. I had ascites accumulation and it was drained a couple of days before starting treatment but they could only get 1 1/2 liters out (hides in pockets of scar tissue???). But that 1 1/2 liters out gave me lots of relief! It's back again and I look 6 months pregnant. My doctor wasn't really crazy about draining again - he said I don't get much bang for my buck due to my scarred anatomy. But when I went in for chemo Friday, I was in tears and the nurses called him and he scheduled a parencentesis for tomorrow! I pray that they can get the optimal amount OUT and that the taxol will start keeping it from forming anymore.

    I am a teacher and although I have been fortunate that all these problems have popped up during the summer while I'm off, I'm very concerned that the start of school is only a couple of weeks away.

    Thanks for support!
    JoAnne
    Texas

    Don't let the numbers freak you out too much.
    My last CA125, taken July 12th, was somehere around 2500, down from 8500 it was on June 1st before the radioembolism of the right side of my liver. Either number is CRAZY high but I really think with liver mets you will see these amazingly high CA125's. I have decided, since there is nothing I can do about it, to ignore the number. I've had my numbers way up there for many months and the 'number' hasn't killed me yet. I remain symptom-free and feeling good. So don't let the number freak you out. High CA125 doesn't mean impending death. I guess I say that because when mine shot up, I thought "This is it". But it wasn't "it". It's just a high number.

    Taxol is good stuff; I'll bet you see continuously dropping numbers. I will share with you what my radiation interventionist said to me. In late stage cancer with liver mets, EAT, or your cancer will eat you. No matter how you feel after eating, with liver mets it is crucial to eat healthy foods and KEEP eating them, even if you need to 'graze' with tiny meals all day long. And drink 64 oz. of water or other no-caffeine/no alcohol liquids to keep your digestion well flushed. This "eat-and-drink" self-care will do wonders at making you feel better. Stay vigilant with it; I know some days it is hard, but do it. ((((JoAnne))))

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