Raised ca125!

Best Friend
Best Friend Member Posts: 222
in Peritoneal Cancer #1
To Catch you up....mom who's 62 had her debulking after three rounds chemo. Her ca125 was 86,000 when they found the cancer. It went from that to 10 after the chemo. Now, post surgery they did one chemo and did not give her the number.Than the following friday they gave her just the taxol instead of the carbo/taxol cocktail. Now this past friday they said no to her getting the treatmernt cuz of her bloodwork comin out low on a few things. So she finally asked her ca125 and they said it was higher by a little. Like from 10 to 24. If they are measuring the tumor activity than this would mean it is already growing. The nurse once again says well the next chemo it will be more accurate. I swear everytime it;s a bad number they say it's not accurate to make u feel safe. I need honesty people.

Comments

  • stella65
    stella65 Member Posts: 152
    #2
    I know how you feel but...
    I posted the other day about mums CA125, we went for her 3 month check and it had gone up from 13 to 47, bearing in mind it was only 30 when she was diagnosed, we have been told all along that they are relying on it less and less and that mum would not have chemo again until she shows symptoms, so what is the point of stressing about a number that you can do nothing about! sometimes ignorance is bliss and now when mum goes for her check they will just talk to her about how she feels, she will not have the test, I know we will still wonder what it is but can't stress about it as much, thinking of you, nothing about this damn cancer is easy X
  • Best Friend
    Best Friend Member Posts: 222
    #3
    stella65 said:

    I know how you feel but...
    I posted the other day about mums CA125, we went for her 3 month check and it had gone up from 13 to 47, bearing in mind it was only 30 when she was diagnosed, we have been told all along that they are relying on it less and less and that mum would not have chemo again until she shows symptoms, so what is the point of stressing about a number that you can do nothing about! sometimes ignorance is bliss and now when mum goes for her check they will just talk to her about how she feels, she will not have the test, I know we will still wonder what it is but can't stress about it as much, thinking of you, nothing about this damn cancer is easy X

    thanks
    It is nuts! I am reading a new book about the Biography of Cancer. now that i am going through it with my mom i think this book is so interesting. I mean it is even about cancer back in egyptian times and it reminds me of how far they have come and i shouldn't doubt them. Maybe u would be interested. The Emperor of all Maladies is the name of the book.
  • AussieMaddie
    AussieMaddie Member Posts: 345 Member
    #4
    Hi BF
    I was shocked to see how enormously high your mother's CA125 was at the start. I thought mine was bad enough at 13,000+ down to 12, now up, about one or two points a month over teh past few months to 19, so I'm experiencing that upward move too. When I expressed to my oncologist if that meant that the tumours (which they've never been able to see) were growing again, he said he couldn't say for sure, that he's not worried at present. He stopped my chemotherapy yesterday, will keep an eye on my CA125 each 4 weeks. He has said, and I have see it written elsewhere, that the number can go up or down on account of other factors, such as inflammation, so they can' be sure of the movement is only a little. He simply confirmed that if it spiked suddenly, he will surely look into more treatment. I think for him, it is of more interest whether or not I start to build up the fluid in my abdomen or lung again as fluid was my one and only symptom from the start. It would be harder to tell now I imagine because I've put a lot of weight on (due only to overeating) and am carrying a lot of fat around my abdomen. I have sometimes wondered if it is my constant bingeing on food and punishing my stomach that predisposed me to peritoneal cancer, but I think I'm alone here in being so big, or at least being a binge eater, so that doesn't hold up well.

    But, as I say, the CA125 and move slightly on account of other factors, so when they tell you to wait for the next chemo, it might be because the number really might come down on account of it. I don't know but they really may be being honest, as far as they are able to be.

    My thoughts with you and your mum,

    AussieMaddie
    xxxx
  • Best Friend
    Best Friend Member Posts: 222
    #5
    AussieMaddie said:

    Hi BF
    I was shocked to see how enormously high your mother's CA125 was at the start. I thought mine was bad enough at 13,000+ down to 12, now up, about one or two points a month over teh past few months to 19, so I'm experiencing that upward move too. When I expressed to my oncologist if that meant that the tumours (which they've never been able to see) were growing again, he said he couldn't say for sure, that he's not worried at present. He stopped my chemotherapy yesterday, will keep an eye on my CA125 each 4 weeks. He has said, and I have see it written elsewhere, that the number can go up or down on account of other factors, such as inflammation, so they can' be sure of the movement is only a little. He simply confirmed that if it spiked suddenly, he will surely look into more treatment. I think for him, it is of more interest whether or not I start to build up the fluid in my abdomen or lung again as fluid was my one and only symptom from the start. It would be harder to tell now I imagine because I've put a lot of weight on (due only to overeating) and am carrying a lot of fat around my abdomen. I have sometimes wondered if it is my constant bingeing on food and punishing my stomach that predisposed me to peritoneal cancer, but I think I'm alone here in being so big, or at least being a binge eater, so that doesn't hold up well.

    But, as I say, the CA125 and move slightly on account of other factors, so when they tell you to wait for the next chemo, it might be because the number really might come down on account of it. I don't know but they really may be being honest, as far as they are able to be.

    My thoughts with you and your mum,

    AussieMaddie
    xxxx

    hey
    She finally had just taxol this past friday. The doc knew she would be scared if they didn't do any yet again. I mean i can understand. They were going to be real agressive after surgery and she just doesn't want it to all grow back after going through that surgery. She didn't tell me the ca number this week. I am sure she doesn't wanna get me worked up.
    Don't worry i know the whole overeating thing. I was like 280 after my daughter was borna dn i stayed there. Finally like 3 yrs ago i was down to 17o. Well i of course got comfortable with a boyfriend and now also with my mom sick and i broke up with him after two years, I am eating nonstop. It is hard to control. It's what comforts us.
    I am reading a book that discusses inflammation such as gastrits can lead to cancer cuz of the inflammation changing cells very gradually over the years. So, I too believe the link to the stomach and this type of cancer are very close.hey
  • AussieMaddie
    AussieMaddie Member Posts: 345 Member
    #6
    Best Friend said:

    hey
    She finally had just taxol this past friday. The doc knew she would be scared if they didn't do any yet again. I mean i can understand. They were going to be real agressive after surgery and she just doesn't want it to all grow back after going through that surgery. She didn't tell me the ca number this week. I am sure she doesn't wanna get me worked up.
    Don't worry i know the whole overeating thing. I was like 280 after my daughter was borna dn i stayed there. Finally like 3 yrs ago i was down to 17o. Well i of course got comfortable with a boyfriend and now also with my mom sick and i broke up with him after two years, I am eating nonstop. It is hard to control. It's what comforts us.
    I am reading a book that discusses inflammation such as gastrits can lead to cancer cuz of the inflammation changing cells very gradually over the years. So, I too believe the link to the stomach and this type of cancer are very close.hey

    Hi (( ))
    You never know
    Hi (( ))

    You never know what causes these things. One day they might.

    Take care

    AussieMaddie
  • wanttogetwellsoon
    wanttogetwellsoon Member Posts: 147
    #7
    AussieMaddie said:

    Hi BF
    I was shocked to see how enormously high your mother's CA125 was at the start. I thought mine was bad enough at 13,000+ down to 12, now up, about one or two points a month over teh past few months to 19, so I'm experiencing that upward move too. When I expressed to my oncologist if that meant that the tumours (which they've never been able to see) were growing again, he said he couldn't say for sure, that he's not worried at present. He stopped my chemotherapy yesterday, will keep an eye on my CA125 each 4 weeks. He has said, and I have see it written elsewhere, that the number can go up or down on account of other factors, such as inflammation, so they can' be sure of the movement is only a little. He simply confirmed that if it spiked suddenly, he will surely look into more treatment. I think for him, it is of more interest whether or not I start to build up the fluid in my abdomen or lung again as fluid was my one and only symptom from the start. It would be harder to tell now I imagine because I've put a lot of weight on (due only to overeating) and am carrying a lot of fat around my abdomen. I have sometimes wondered if it is my constant bingeing on food and punishing my stomach that predisposed me to peritoneal cancer, but I think I'm alone here in being so big, or at least being a binge eater, so that doesn't hold up well.

    But, as I say, the CA125 and move slightly on account of other factors, so when they tell you to wait for the next chemo, it might be because the number really might come down on account of it. I don't know but they really may be being honest, as far as they are able to be.

    My thoughts with you and your mum,

    AussieMaddie
    xxxx

    overeating
    Maddie..
    I read between the lines that you were somehow blaming yourself for your cancer. These things just come about with no rhyme or reason sometimes. Other people who overeat don't get it do they? That's how I look at it. By the way, since my diagnosis in March, I've been eating far too much sugary things. I don't know whether the condition makes me like that or it's psychological and I'm eating for comfort. :)
  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    #8
    wanttogetwellsoon said:

    overeating
    Maddie..
    I read between the lines that you were somehow blaming yourself for your cancer. These things just come about with no rhyme or reason sometimes. Other people who overeat don't get it do they? That's how I look at it. By the way, since my diagnosis in March, I've been eating far too much sugary things. I don't know whether the condition makes me like that or it's psychological and I'm eating for comfort. :)

    Sugar
    WTGWS
    If there is any way you can cut down your sugar intake, go for it. I know there are people who would argue this, but there is a lot of science out there that indicates blood glucose affects cancer growth. I, myself, avoid sugar completely. Inflammation, blood glucose, hormones, stress, and blood supply to the tumor are all things we need to keep an eye on and do anything we can to control.
    take care,
  • Best Friend
    Best Friend Member Posts: 222
    #9
    Tethys41 said:

    Sugar
    WTGWS
    If there is any way you can cut down your sugar intake, go for it. I know there are people who would argue this, but there is a lot of science out there that indicates blood glucose affects cancer growth. I, myself, avoid sugar completely. Inflammation, blood glucose, hormones, stress, and blood supply to the tumor are all things we need to keep an eye on and do anything we can to control.
    take care,

    My My.
    My mom has always had a preference for sweets. Hoping this is not a bad thing now. Never thought of sugar makin a tumor grow.
  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    #10
    Best Friend said:

    My My.
    My mom has always had a preference for sweets. Hoping this is not a bad thing now. Never thought of sugar makin a tumor grow.

    Sweet tooth
    I had a sweet tooth too, but I got over it. Based on what I've learned, a cancer survivor should avoid sugar, if at all possible. If your appetite is affected by treatment and sweets are one of the few things you can eat, well, you have to eat. I practically lived on coffee ice cream during chemo. Following treatment, however, sugar does not help you stay in remission. Cancer cells love glucose and have 20 times the glucose receptors than regular cells. PET scans are based on the fact that tumor cells absorb sugar more readily than normal cells. If you're skeptical, don't take my word for it, but it's worth researching.
  • AussieMaddie
    AussieMaddie Member Posts: 345 Member
    #11
    wanttogetwellsoon said:

    overeating
    Maddie..
    I read between the lines that you were somehow blaming yourself for your cancer. These things just come about with no rhyme or reason sometimes. Other people who overeat don't get it do they? That's how I look at it. By the way, since my diagnosis in March, I've been eating far too much sugary things. I don't know whether the condition makes me like that or it's psychological and I'm eating for comfort. :)

    You said "I read between the
    You said "I read between the lines that you were somehow blaming yourself for your cancer. These things just come about with no rhyme or reason sometimes. Other people who overeat don't get it do they?"

    Thank you. I'm not blaming myself. I was just wondering if it might have been related. I long ago stopped judging myself for binge eating. It's part of a larger psychological problem, too big for me to fix now. And although I know that many people might attribute some cause to diet, especially eating sweets, I know if people who live on sweets without getting cancer. Maybe it's because they have a better constitution, or maybe it just, as you say, no rhyme or reason (as I'm inclined to believe)

    Take good care :)

    AussieMaddie
  • Best Friend
    Best Friend Member Posts: 222
    #12
    AussieMaddie said:

    You said "I read between the
    You said "I read between the lines that you were somehow blaming yourself for your cancer. These things just come about with no rhyme or reason sometimes. Other people who overeat don't get it do they?"

    Thank you. I'm not blaming myself. I was just wondering if it might have been related. I long ago stopped judging myself for binge eating. It's part of a larger psychological problem, too big for me to fix now. And although I know that many people might attribute some cause to diet, especially eating sweets, I know if people who live on sweets without getting cancer. Maybe it's because they have a better constitution, or maybe it just, as you say, no rhyme or reason (as I'm inclined to believe)

    Take good care :)

    AussieMaddie

    Well...
    I don't understand why some people who overeat don't understand? Many people suffer from obesity. It's not a good thing but sometimes stress can cause it, other times its someones body make-up, other times it is a psychological reason. Sounds like maybe u have all three.I know i don't have cancer and i will never know how that feels.....but i just try and help no matter what. I think food is something that gives us comfort. We can always count on it being there. It is terrible. I have been both ends of the spectrum.
    Either way, you need to focus on one thing at a time. Like now that my mom is feelin a little better, I am starting to take care of my eating habits. I have to be healthy to take care of my daughter and my mother. Eating healthy isn't fun, but sometimes it can keep us healthier. Some people who eat junk don't get cancer but it catches up with them in some way shape and form. You can be a size 16 and be healthier than someone who is a size 2 and has a super fast metabolism. That doesn't mean there arteries aren't clogged.
    Just sayin I am sorry for trying to even imagine how u feel. I just know its hard to deal with one thing let alone two or three. Focus on making urself get thru the ups and downs of this disease and than worry about working on the superficial stuff.
    Hugs!!!!!!!
  • AussieMaddie
    AussieMaddie Member Posts: 345 Member
    #13
    Best Friend said:

    Well...
    I don't understand why some people who overeat don't understand? Many people suffer from obesity. It's not a good thing but sometimes stress can cause it, other times its someones body make-up, other times it is a psychological reason. Sounds like maybe u have all three.I know i don't have cancer and i will never know how that feels.....but i just try and help no matter what. I think food is something that gives us comfort. We can always count on it being there. It is terrible. I have been both ends of the spectrum.
    Either way, you need to focus on one thing at a time. Like now that my mom is feelin a little better, I am starting to take care of my eating habits. I have to be healthy to take care of my daughter and my mother. Eating healthy isn't fun, but sometimes it can keep us healthier. Some people who eat junk don't get cancer but it catches up with them in some way shape and form. You can be a size 16 and be healthier than someone who is a size 2 and has a super fast metabolism. That doesn't mean there arteries aren't clogged.
    Just sayin I am sorry for trying to even imagine how u feel. I just know its hard to deal with one thing let alone two or three. Focus on making urself get thru the ups and downs of this disease and than worry about working on the superficial stuff.
    Hugs!!!!!!!

    You don't need to say sorry
    You don't need to say sorry for speaking. Not at all! We each bring understanding of what we go through so that when someone else experiences something similar it might help them too. It's really good to have a community like this and I really appreciate your being here too (((( )))
    AussieMaddie

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