CA125 Number

debrawylie
debrawylie Member Posts: 12
in Ovarian Cancer #1
My mom's CA125 today, first reading, was 630.8. From all research and reading I am doing, this is an extremely high number. She's had one chemo treatment so far. They are having to do very aggressive treatment b/c my mom is a stage IV and has 2 aortic anurisms discovered at the same time as this dreadful disease:o( Because of the anurisms, she was unable to have surgery to relieve some of the pain so she had to go immediately, less than a week of diagnosis, and begin agressive treatment. 6 days later she was admitted to the hospited b/c platelets were so low and they wanted to rule out blood clots. No clots found but has had 2 rounds of transfusions. She has rash on her legs. Shortness of breath (unable to remove fluid from her abdoment b/c did not want to risk infection).Her vision is blurry, hair is falling out sooner than expected . . . just a host of bad luck side effects as it seems she is having every one. Any information anyone can provide would be helpful. My sweet mother is 64 years old . . . sad story.

Comments

  • poopergirl14052
    poopergirl14052 Member Posts: 1,183 Member
    #2
    your mom
    sorry your Mom has been through so much. Chemo will bring her numbers down so she can be comfortable. What type of chemo is she getting,,carbo/taxol is common and is very hard on platlets. Many ladies on the board have had even higher numbers but most had surgery first then the chemo. What will MD do about anurisms. Can they work around it? I am not sure why the fluid has not been removed,,,risk of infection...I never heard of this. Taking out some fluid would make it easy for her to breath..they also can put in permanent drains....val
  • lovesanimals
    lovesanimals Member Posts: 1,366 Member
    #3
    poopergirl14052 said:

    your mom
    sorry your Mom has been through so much. Chemo will bring her numbers down so she can be comfortable. What type of chemo is she getting,,carbo/taxol is common and is very hard on platlets. Many ladies on the board have had even higher numbers but most had surgery first then the chemo. What will MD do about anurisms. Can they work around it? I am not sure why the fluid has not been removed,,,risk of infection...I never heard of this. Taking out some fluid would make it easy for her to breath..they also can put in permanent drains....val

    Dear Debra
    I am so sorry that your mom is going through this. I will be praying for both you and her as she fights this beast.

    Hugs,
    Kelly
  • Gottalovelife
    Gottalovelife Member Posts: 45
    #4
    My number before surgery was
    My number before surgery was 2000, after surgery was 400, so your Mom's numbers aren't as bad as you think. Hopefully they can remove the fluid soon which will help with her breathing. Chemo is rough on us all, but I guess where they are treating your Moms a little more aggressive it might been even a little tougher on her, and losing the hair is devasting but she just needs to have it shaved off and get the hats and the wigs will make her feel better. Hang in there I know it's hard to watch your Mom go through this, but don't let her give up, tell her to fight like a girl or a lot of women on this board say "put your big girl panties on" life is worth the fight. I don't write on this board a lot but there are a lot of strong women on here with a lot of good advice.Also I have read online where they can't be sure what stage it is till after surgery, I don't know if that's right or not but that is what I have read. Good luck, have faith.

    Hugs and prayers, Cindy
  • kellyh33
    kellyh33 Member Posts: 287
    #5
    CA 125
    Good morning Debra,
    I don't believe 630.8 is off the charts high, my mom's was 14,301. You have to remember that it is a tumour marker and it not always the best source of information. The CT scans are what really tell the story.
    I remember being surprised that mom's hair began to fall out after her first chemo, she actually had it shaved before her second chemo because it was falling out in clumps. Where Mom went for treatment there were hats and turbans that volunteers made so mom had plenty of each. Mom also developed a little bit of a rash her first treatment but all subsequent treatments she did not.
    I am not going to sugarcoat it for you. It is a long and scary road with a lot of ups and downs. Just keep your head down and plow through it as hard as you can. Be there for your mom, hold her hand, listen to her fears and most importantly she must be allowed to make all and any decisions regarding her care.
    Good luck to both you.
    Kelly
  • kellyh33
    kellyh33 Member Posts: 287
    #6
    CA 125
    Good morning Debra,
    I don't believe 630.8 is off the charts high, my mom's was 14,301. You have to remember that it is a tumour marker and it not always the best source of information. The CT scans are what really tell the story.
    I remember being surprised that mom's hair began to fall out after her first chemo, she actually had it shaved before her second chemo because it was falling out in clumps. Where Mom went for treatment there were hats and turbans that volunteers made so mom had plenty of each. Mom also developed a little bit of a rash her first treatment but all subsequent treatments she did not.
    I am not going to sugarcoat it for you. It is a long and scary road with a lot of ups and downs. Just keep your head down and plow through it as hard as you can. Be there for your mom, hold her hand, listen to her fears and most importantly she must be allowed to make all and any decisions regarding her care.
    Good luck to both you.
    Kelly
  • kellyh33
    kellyh33 Member Posts: 287
    #7
    CA 125
    Good morning Debra,
    I don't believe 630.8 is off the charts high, my mom's was 14,301. You have to remember that it is a tumour marker and it not always the best source of information. The CT scans are what really tell the story.
    I remember being surprised that mom's hair began to fall out after her first chemo, she actually had it shaved before her second chemo because it was falling out in clumps. Where Mom went for treatment there were hats and turbans that volunteers made so mom had plenty of each. Mom also developed a little bit of a rash her first treatment but all subsequent treatments she did not.
    I am not going to sugarcoat it for you. It is a long and scary road with a lot of ups and downs. Just keep your head down and plow through it as hard as you can. Be there for your mom, hold her hand, listen to her fears and most importantly she must be allowed to make all and any decisions regarding her care.
    Good luck to both you.
    Kelly
  • Mwee
    Mwee Member Posts: 1,338
    #8
    Hi Debra
    I was glad to hear that blood clots were not a factor. She should feel better after the transfusions. You're right that she has had the bad luck of having many different symptoms at once, but I think she should start seeing improvement after a few more chemos. Sometimes it takes a couple of rounds to get the strenght of the chemo right. It might make her more comfortable to have her hair buzzed off if it's falling out. The loss of hair can be rather shocking at first, but you get used to it very quickly... hey, you don't have to shave your legs and you get a free brazilian. You can make her more comfortable about it with some cute hats or a wig. Hang in there, my girl, many of the women here were diagnosed several years ago and here to help.
    (((HUGS))) Maria
  • debrawylie
    debrawylie Member Posts: 12
    #9
    poopergirl14052 said:

    your mom
    sorry your Mom has been through so much. Chemo will bring her numbers down so she can be comfortable. What type of chemo is she getting,,carbo/taxol is common and is very hard on platlets. Many ladies on the board have had even higher numbers but most had surgery first then the chemo. What will MD do about anurisms. Can they work around it? I am not sure why the fluid has not been removed,,,risk of infection...I never heard of this. Taking out some fluid would make it easy for her to breath..they also can put in permanent drains....val

    thank you for your response. they are not doing anything about anurisms at this time as the cancer mass is their focus. She's been instructed not to lift anything heavier than a can of soda and she can't get sick to or stomach or otherwise strain for fear of rupturing an anurism resulting in sudden death. She's had fluid removed twice but before starting chemo. Since starting chemo, yes carbo/taxol, her platelets have been so low, they cannot remove the fluid for risk of infection. Just a crazy, crazy dance she's forced to do right now to stay on top of everything . . . what a juggling act my sweet mother is doing. thank you for your support
  • karen1951
    karen1951 Member Posts: 103
    #10
    debrawylie said:

    thank you for your response. they are not doing anything about anurisms at this time as the cancer mass is their focus. She's been instructed not to lift anything heavier than a can of soda and she can't get sick to or stomach or otherwise strain for fear of rupturing an anurism resulting in sudden death. She's had fluid removed twice but before starting chemo. Since starting chemo, yes carbo/taxol, her platelets have been so low, they cannot remove the fluid for risk of infection. Just a crazy, crazy dance she's forced to do right now to stay on top of everything . . . what a juggling act my sweet mother is doing. thank you for your support

    it's painful to read what
    it's painful to read what your mom is enduring and watching her got thru this must be agonizing. please know you are in our hearts and prayers...hopefully the doctors will get everything under control soon for your mom.....karen
  • debrawylie
    debrawylie Member Posts: 12
    #11
    kellyh33 said:

    CA 125
    Good morning Debra,
    I don't believe 630.8 is off the charts high, my mom's was 14,301. You have to remember that it is a tumour marker and it not always the best source of information. The CT scans are what really tell the story.
    I remember being surprised that mom's hair began to fall out after her first chemo, she actually had it shaved before her second chemo because it was falling out in clumps. Where Mom went for treatment there were hats and turbans that volunteers made so mom had plenty of each. Mom also developed a little bit of a rash her first treatment but all subsequent treatments she did not.
    I am not going to sugarcoat it for you. It is a long and scary road with a lot of ups and downs. Just keep your head down and plow through it as hard as you can. Be there for your mom, hold her hand, listen to her fears and most importantly she must be allowed to make all and any decisions regarding her care.
    Good luck to both you.
    Kelly

    CA 125
    Thanks for your response Kelly. I always appreciate hearing from daughters who have or are going thru this with their mothers. The most important thing I have asked from all who have advice for me is to shoot straight and tell me what's happening. I'm in colorado and my mom is in TX. I go back and forth and especially am planning to be there by her side for each chemo treatment. She's only had one so far but is having every side effect possible I think. She's been a trooper and we are taking this thing one day at a time even sometimes one hour at a time. I've already had one dear friend taken from me because of this horrible disease . . . never dreamed I'd be going thru the same thing with my mom. She says she's going to make it for the 8 rounds of chemo in her 24 week cycle and I will stand beside her whatever she chooses b/c you are right, the decision to stay in and fight or retreat and just live your life the best you can is hers to make. Our mothers are so precious . . . it's so hard to see them trying to survive by poisoning their bodies . . . it can get so confusing. Thanks for your support:o)
  • debrawylie
    debrawylie Member Posts: 12
    #12
    kellyh33 said:

    CA 125
    Good morning Debra,
    I don't believe 630.8 is off the charts high, my mom's was 14,301. You have to remember that it is a tumour marker and it not always the best source of information. The CT scans are what really tell the story.
    I remember being surprised that mom's hair began to fall out after her first chemo, she actually had it shaved before her second chemo because it was falling out in clumps. Where Mom went for treatment there were hats and turbans that volunteers made so mom had plenty of each. Mom also developed a little bit of a rash her first treatment but all subsequent treatments she did not.
    I am not going to sugarcoat it for you. It is a long and scary road with a lot of ups and downs. Just keep your head down and plow through it as hard as you can. Be there for your mom, hold her hand, listen to her fears and most importantly she must be allowed to make all and any decisions regarding her care.
    Good luck to both you.
    Kelly

    CA 125
    Thanks for your response Kelly. I always appreciate hearing from daughters who have or are going thru this with their mothers. The most important thing I have asked from all who have advice for me is to shoot straight and tell me what's happening. I'm in colorado and my mom is in TX. I go back and forth and especially am planning to be there by her side for each chemo treatment. She's only had one so far but is having every side effect possible I think. She's been a trooper and we are taking this thing one day at a time even sometimes one hour at a time. I've already had one dear friend taken from me because of this horrible disease . . . never dreamed I'd be going thru the same thing with my mom. She says she's going to make it for the 8 rounds of chemo in her 24 week cycle and I will stand beside her whatever she chooses b/c you are right, the decision to stay in and fight or retreat and just live your life the best you can is hers to make. Our mothers are so precious . . . it's so hard to see them trying to survive by poisoning their bodies . . . it can get so confusing. Thanks for your support:o)
  • debrawylie
    debrawylie Member Posts: 12
    #13
    kellyh33 said:

    CA 125
    Good morning Debra,
    I don't believe 630.8 is off the charts high, my mom's was 14,301. You have to remember that it is a tumour marker and it not always the best source of information. The CT scans are what really tell the story.
    I remember being surprised that mom's hair began to fall out after her first chemo, she actually had it shaved before her second chemo because it was falling out in clumps. Where Mom went for treatment there were hats and turbans that volunteers made so mom had plenty of each. Mom also developed a little bit of a rash her first treatment but all subsequent treatments she did not.
    I am not going to sugarcoat it for you. It is a long and scary road with a lot of ups and downs. Just keep your head down and plow through it as hard as you can. Be there for your mom, hold her hand, listen to her fears and most importantly she must be allowed to make all and any decisions regarding her care.
    Good luck to both you.
    Kelly

    one more thing
    Kelly, how is your mom?
  • AnneBehymer
    AnneBehymer Member Posts: 738 Member
    #14
    This sounds dumb
    The fact that she is having so many side effects and so soon is a good thing it mean the chemo is working. I had a lot of side effects almost right away my hair fell out in ten days and any discomfertable side effects I had right away. Regarding the number mine was 2,000 before I started by second treatment it was down to 69 and by third treatment I was in remission with a ca125 of 14.It later got down to six and stayed there a long time. A friends sisters numbers was over 30,000 when she started I don't know what it is now but your moms numbers are not to high but that does does not matter her numbers are up and that is not good. My numbers are on the rise again by my doctor is on it so I am not to worried. I am sorry we had to meet here but please continue to come because you will find hope here.

    Love, Hugs, and Prayers
    Anne
  • Brown Girl
    Brown Girl Member Posts: 4
    #15
    Hi Debra
    I haven't posted on this board as my mom has Primary Peritoneal Cancer, but I wanted to give you some support. Peritoneal cancer is treated the same as ovarian cancer. My mom is 74 and was diagnosed in November. Mom did have the rash which was very uncomfortable, the doctor prescribed a steroid pack and it was gone within two days. I live in Arkansas and my mom lives in Chicago. I have siblings that live in Chicago, but it is not the same as being there myself. I have made two trips to stay with Mom for 10 days at a time. It is difficult with a family to take care of in Arkansas and a full time job. We have to take things one day at a time and keep the faith. There are so many successful warriors on this site. They continually inspire me and have offered me so much hope. I just wanted to let you know that you are not alone in this tough position of being a loving daughter that just wants to be with her Mom during this battle. You are in my prayers.

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