Follow-up on the CA125?

SOPHIE333
SOPHIE333 Member Posts: 92
in Peritoneal Cancer #1
Hi all,
Mum had CA125 of 500 and after her first chemo it was down to 55. But she never heard anything again after round 2-5 about CA125. Is that not "standard procedure" to measure after each chemo? Should I talk to her doctor about it?

Thank you,
Sophie

Comments

  • stella65
    stella65 Member Posts: 152
    #2
    Same here!
    Same here in that mum wasn't told her CA125 but she did always have her blood tested to see if she was ok to have her next chemo so we thought she had the CA125 checked at the same time, not sure though, we have generally found you have to ask ask ask otherwise you get told very little! X
  • SOPHIE333
    SOPHIE333 Member Posts: 92
    #3
    stella65 said:

    Same here!
    Same here in that mum wasn't told her CA125 but she did always have her blood tested to see if she was ok to have her next chemo so we thought she had the CA125 checked at the same time, not sure though, we have generally found you have to ask ask ask otherwise you get told very little! X

    You are so right
    You are so right, you have to ask, ask and ask again always! It is very frustrating. Then mums doctor says that she tells mum everything and that mum chooses what to pass on to me. I am not pleased with that as mum has a lot of morphine and "chemo brain" and forgets. She don not remember it all and she would be happy if I was informed by the doctor as well to be able to discuss with mum.. This keeps me frustrated too..

    Can I ask, have you done the test for the mutated gene? Mum wants me to and I am hesitating. She is first in family with cancer so there might not be any heritage, but still..

    Keep fighting for our mums.

    Love,
    Sophie
  • stella65
    stella65 Member Posts: 152
    #4
    SOPHIE333 said:

    You are so right
    You are so right, you have to ask, ask and ask again always! It is very frustrating. Then mums doctor says that she tells mum everything and that mum chooses what to pass on to me. I am not pleased with that as mum has a lot of morphine and "chemo brain" and forgets. She don not remember it all and she would be happy if I was informed by the doctor as well to be able to discuss with mum.. This keeps me frustrated too..

    Can I ask, have you done the test for the mutated gene? Mum wants me to and I am hesitating. She is first in family with cancer so there might not be any heritage, but still..

    Keep fighting for our mums.

    Love,
    Sophie

    SNAP!
    Yes mum keeps on at me to have the test, my grandmother had ovarian cancer too so I have promised mum I will have it done within the next month, or at least discuss it with my GP, I feel mum has enough to worry about so she doesn't need to be worring about me as well! On the subject of information, when my mum had her op the surgeon came round and spoke to her while she was still very groggy and on her own, she remembered none of it, it really seems so silly and a waste of time, we really have had to squeeze for any info, infact when mum had her first 3 month check after the chemo, the doc talked about a cancer on the bowel, we had no idea that she had that, we just thought it was ovarian and it had seeded in the peritoneum! Mum has her 2nd 3 month check this friday so we are thinking of all we want to ask.... please keep everything crossed for my mum and keep me updated on yours
    Much love SueX
  • SOPHIE333
    SOPHIE333 Member Posts: 92
    #5
    stella65 said:

    SNAP!
    Yes mum keeps on at me to have the test, my grandmother had ovarian cancer too so I have promised mum I will have it done within the next month, or at least discuss it with my GP, I feel mum has enough to worry about so she doesn't need to be worring about me as well! On the subject of information, when my mum had her op the surgeon came round and spoke to her while she was still very groggy and on her own, she remembered none of it, it really seems so silly and a waste of time, we really have had to squeeze for any info, infact when mum had her first 3 month check after the chemo, the doc talked about a cancer on the bowel, we had no idea that she had that, we just thought it was ovarian and it had seeded in the peritoneum! Mum has her 2nd 3 month check this friday so we are thinking of all we want to ask.... please keep everything crossed for my mum and keep me updated on yours
    Much love SueX

    Fingers crossed
    I will have my fingers crossed for your mum and for us backing them up when they need us and for us coping with it all and with our own families, doctors and everything else in life that we just can't exclude in our lives even if we want to concentrate on mum.. Much love to you and keep me updated too. It feels good to have someone that understands.

    Love,
    Sophie
  • stella65
    stella65 Member Posts: 152
    #6
    SOPHIE333 said:

    Fingers crossed
    I will have my fingers crossed for your mum and for us backing them up when they need us and for us coping with it all and with our own families, doctors and everything else in life that we just can't exclude in our lives even if we want to concentrate on mum.. Much love to you and keep me updated too. It feels good to have someone that understands.

    Love,
    Sophie

    Mums news
    Well. just got back from the hospital after a very long wait, Doc was pleased with how mum is getting on, she raised her eyebrows when mum asked about her CA125, it was 47, I know that will seem low to a lot of you but it is the highest yet, the Doc said she wants mum to forget about the test and concentrate on accessing her by symptoms, she went through these with mum, the other thing is the pain in mums stomach that made her go to her GP in the first place and bought the cancer to light, Doc wants her to have a endoscopy to see if she has an ulcer but mum is feeling ( understandably) like she has been through enough for the moment so I have just said she must make her own mind up but I am sure she would feel better knowing what is causing the pain and they can treat it and hopefully make her more comfortable, soooooooo, good news really but can't help butbe a little worried by the elevated CA125 and I know mum will be worrying, any thoughts from anyone would be appreciated X
  • Best Friend
    Best Friend Member Posts: 222
    #7
    stella65 said:

    Mums news
    Well. just got back from the hospital after a very long wait, Doc was pleased with how mum is getting on, she raised her eyebrows when mum asked about her CA125, it was 47, I know that will seem low to a lot of you but it is the highest yet, the Doc said she wants mum to forget about the test and concentrate on accessing her by symptoms, she went through these with mum, the other thing is the pain in mums stomach that made her go to her GP in the first place and bought the cancer to light, Doc wants her to have a endoscopy to see if she has an ulcer but mum is feeling ( understandably) like she has been through enough for the moment so I have just said she must make her own mind up but I am sure she would feel better knowing what is causing the pain and they can treat it and hopefully make her more comfortable, soooooooo, good news really but can't help butbe a little worried by the elevated CA125 and I know mum will be worrying, any thoughts from anyone would be appreciated X

    Mothers!
    I know my mom has alot of pain in her tummy after chemo. The doc says he has no reasoning but it is everytime and she has just come to accept that it is a side effect of the drug. I mean, if u think about it, there are different chemos for different parts of the body. That specific chemo is attacking her ovaries, peritoneum, etc. Therefor maybe that just makes it sore, tender, disruptive.
    And i am also having the problem with the ,"Hey Mom, what was ur CA 125 number? Her answer,"I don't know. They didn't tell me." They are probably soooo happy i am back to work and not at the chemo appt. I never shut-up. I just like being informed. Just like her debulking surgery..."Well, mom what all did they do?" Her answer," I don't know." I said to her,"DON'T YOU WANNA KNOW WHAT ORGANS YOU DON'T HAVE?" Halleluijah!
  • SOPHIE333
    SOPHIE333 Member Posts: 92
    #8
    stella65 said:

    Mums news
    Well. just got back from the hospital after a very long wait, Doc was pleased with how mum is getting on, she raised her eyebrows when mum asked about her CA125, it was 47, I know that will seem low to a lot of you but it is the highest yet, the Doc said she wants mum to forget about the test and concentrate on accessing her by symptoms, she went through these with mum, the other thing is the pain in mums stomach that made her go to her GP in the first place and bought the cancer to light, Doc wants her to have a endoscopy to see if she has an ulcer but mum is feeling ( understandably) like she has been through enough for the moment so I have just said she must make her own mind up but I am sure she would feel better knowing what is causing the pain and they can treat it and hopefully make her more comfortable, soooooooo, good news really but can't help butbe a little worried by the elevated CA125 and I know mum will be worrying, any thoughts from anyone would be appreciated X

    Hi Stella and BestFriend
    Its almost spooky how similar our mums act.. I cant get a lot out of her and the doctors keep telling me that "I have told your mum", ask her. But I can´t! She is either on drugs, depressed or just ignoring the information. Wouldn´t it be better if I too got the information directly from the doctor and could answer mums questions when she feels like? As a relative, that would be a way of standard as I think.

    Anyway. Mum also has stomach pain after chemo. But she have had two obstructions causing her to have the colostomy. After that surgery, the illness and pain went away after chemos. She is quite happy with that and she is gaining weight right now and has a stronger defence.. They will likely do a reverse on the colostomy after a while when chemo has done its work to thrink the "caking" of the abdomen and mum seems content with that now.

    For mum, the anxiety is the worst. She has become afraid of everything. Being alone, not getting the right treatment, medication..death... And that makes it very hard for her. I keep passing on messages from this board on survival stories and she is grateful for that. Then she is able to fight for it for a while longer.. And so we act around this cancer. She knows that she can be put into remission, live for several years and have a better quality of life than right know when the treatments are at the heaviest. I am trying to back her up, lift her up and show her life as she was very active and happy before the diagnosis. My strong mum went into a very weak person in less than a month. Very hard to take. I want her spirit back, even if the time is limited in a sense. I want to live life at the fullest with her the time we have.

    Rather long note..sorry
    Love Sophie

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