My Moms CA125 is down to 89 from 1575, but I still have questions.

DonTexas
DonTexas Member Posts: 3
edited March 2014 in Ovarian Cancer #1
Hello everyone,

My Mom was diagnosed with stg4 ovarian cancer around 6-8 months ago, I loose track of time. In the beginning she had to have fluid pulled off her lungs (plura) about 4 times before it got under control. She had a partial hysto in 1970, but they left her ovaries. She has had around 8 chemo's and her CA125 keeps coming down. She was at 1575 and the last number I got on Xmas eve was 89. She is 84 going on 60 the way she acts. I am taking this as great news? The oncologist is not real talkative. She still is getting anemic and they have been having to give her procrit when they do the chemo. I guess I am just hoping that the CA125 is an indicator that she is getting better? How do you know when you are cancer free?

Thanks...

Comments

  • softD
    softD Member Posts: 69
    #2
    Ca125
    Hello DonTexas,
    the Ca125 is a marker of the cancer proteins in our blood. The normal range in
    a cancer free person is below 35. This marker is used for our cancer to show progress of treatment. My oncologist told me that with chemo it should get to or below 10, and if it can stay at that mark he would coinsider me to be in remission. I don't know that we will ever be cancer free again though, it is just a matter of trying to stay remission for as long as possible before our markers begin to rise and we have a recurrence.
    I have finished chemo 6 wks ago and my marker is 12 now (was 200). I have stage 3c ovarian ca diagnosed in june 08.Have ca125 checks every 3 months now.
    I wish your mum all the best with her treatment, hope this helps
    Take care
    Carolyn :)
  • saundra
    saundra Member Posts: 1,370 Member
    #3
    Stage IV
    I am in Texas also, and have Stage IV. I am now 70 yrs. but was diagnosed 3/2/07. I started with CA125 of 2988 and dropped to below 10 after 9 chemos and the major debulking surgery including radio frequency ablation of three tumors in the liver and removal of the spleen. Mine had spread to these two organs and thus the Stage IV. I then elected to take a low dose of Taxol every 4 weeks to keep me in remission. That lasted 10 months and the numbers started to rise again so I was put on an anti estrogen pill daily. After 2 months the numbers have dropped from 84 to 48 so I will continue this easy taking pill as long as it keeps the numbers down. I was in good health to start with and have withstood the chemo very well. Welcome to this site and feel free to ask any questions you like. I have to look at my disease as a chronic one and it will probably always be with me. (((HUGS)) Saundra
  • DonTexas
    DonTexas Member Posts: 3
    #4
    saundra said:

    Stage IV
    I am in Texas also, and have Stage IV. I am now 70 yrs. but was diagnosed 3/2/07. I started with CA125 of 2988 and dropped to below 10 after 9 chemos and the major debulking surgery including radio frequency ablation of three tumors in the liver and removal of the spleen. Mine had spread to these two organs and thus the Stage IV. I then elected to take a low dose of Taxol every 4 weeks to keep me in remission. That lasted 10 months and the numbers started to rise again so I was put on an anti estrogen pill daily. After 2 months the numbers have dropped from 84 to 48 so I will continue this easy taking pill as long as it keeps the numbers down. I was in good health to start with and have withstood the chemo very well. Welcome to this site and feel free to ask any questions you like. I have to look at my disease as a chronic one and it will probably always be with me. (((HUGS)) Saundra

    Thank you so much for the information
    Mom has been living with us since they discovered the cancer. She has realy progressed since the chemo's. She is moving around, likes to go shopping again and has more energy than I.
    In the beginning it was pretty tough and I did not know how or if I could do this, but I dont give up very easy. She is, of course the most incredible woman I have ever known, but I guess moms are suppose to be. Sorry, for rattling here, I guess I am just having an emotional unload.
    The other questions that I have. She was really nausiated at the start of chemo. Now that her numbers have come way down, She has been increasingly nausiated again. I am having to give her the meds everyday now it seems. Is this to be expected?

    How will they know if it has spread to other parts of her body? I know that they found ovarian cancer cells in the plura fluid that they drained in the beginning. But they said that the mass was on the one ovary 7cmX2cm. She had a all of her female parts removed except ovaries in 1970. They never said anything about any other masses that they saw.
    How or what do they do to check for that?
  • BonnieR
    BonnieR Member Posts: 1,526 Member
    #5
    DonTexas said:

    Thank you so much for the information
    Mom has been living with us since they discovered the cancer. She has realy progressed since the chemo's. She is moving around, likes to go shopping again and has more energy than I.
    In the beginning it was pretty tough and I did not know how or if I could do this, but I dont give up very easy. She is, of course the most incredible woman I have ever known, but I guess moms are suppose to be. Sorry, for rattling here, I guess I am just having an emotional unload.
    The other questions that I have. She was really nausiated at the start of chemo. Now that her numbers have come way down, She has been increasingly nausiated again. I am having to give her the meds everyday now it seems. Is this to be expected?

    How will they know if it has spread to other parts of her body? I know that they found ovarian cancer cells in the plura fluid that they drained in the beginning. But they said that the mass was on the one ovary 7cmX2cm. She had a all of her female parts removed except ovaries in 1970. They never said anything about any other masses that they saw.
    How or what do they do to check for that?

    Hello and wonderful news
    Hi Dontexas, what a wonderful son/daughter you are, caring for your mother, such a wonderful gift you are giving each other. I am glad to hear her ca125 is dropping.

    Your firt question about nausea ~ sometimes the cummalitive affect of the chemo will cause more nausea, make sure you let her doc know as they may decide on different anti nausea meds for her, and unfortunately it can be expected for some and then not for others.

    Did your mom have surgery already adn have the tumor removed? At that time they would know if the cancer was other places or not, but if they told only one ovary I'd expect that to be the case. You can ask for report from the surgery if you want to know more. Or better yet write down all your questions for the next office visit and go through them with the Dr. If I don't write them down I forget once I get there.

    Keep us updated adn again on behalf of so many of us moms, thanks for being there for yours.

    Prayers N Hugs Bonnie
  • saundra
    saundra Member Posts: 1,370 Member
    #6
    Couple of more questions
    Did you mother have the major debulking surgery? Long incision down the entire abdomen? My Stage IV was diagnosed before surgery with a CT scan that showed wide spread tumors all over the abdomen and in the liver. I have a CT about every 3 months, paid for by medicare. The last three have been clear but we know with the rise in CA125 from 7 to 84 that it is growing again. That is when I started the antiestrogen pill. Other glands produce estrogen besides the ovaries. Some tumors are not estrogen receptive or feed on estrogen so this pill (which is for breast cancer) does not work on everyone. I am in West Texas.

    My nausea increased over the 19 months of chemo. I did not have much and the anti nausea meds I was given worked if I started them as soon as I got home from the infusion and kept them up for 36 hours every four hours. Each of us react with nausea a little differently as with other side effects. There are several nausea prescriptions and maybe she needs to change. My nausea never interfered with my appetite, however.

    I also was fortunate that my blood counts bounced back each time to normal or near normal. I did add
    Energising Iron from the Health food store to help with the fatigue. I also took Vit. B-6 and L-glutamin daily to limit the numbness in hands and feet and L-lysine to prevent mouth sores.
  • floridajo
    floridajo Member Posts: 480
    #7
    Don
    I'm sorry you had to find this site,but you will get lots of great advice to help make all this easier on Mom. Your ca-125 is the standard to use to monitor the disease,along with ct scans or PET scans (if your ins will pay). Sometimes as Bonnie said chemo has culmative effect so the nausea can get worse. I would start her on her nausea meds around the clock for the first 5 days after her chemo,instead of using them as needed. Of course you should speak to the Dr. before you begin anything dofferent. Again,welcome to the group.~~~Joanne
  • LPack
    LPack Member Posts: 645
    #8
    HE4
    Don,

    I am going to be getting my blood work this Friday CBC and CA125 before I start my Hexalen on Monday. But I will also be having the newest biomarker HE4 done as well. I have been reading online and it looks like using the combination of HE4 and CA 125 will provide the highest level sensitivity and specificity out of all marker combinations for predicting the presence of ovarian cancer.

    My insurance told me they would pay for this test if it was kept in house. So I will be taking the order in and hope that the lab is up to date on this newest test.

    FYI

    Thanks,
    Libby
  • DonTexas
    DonTexas Member Posts: 3
    #9
    LPack said:

    HE4
    Don,

    I am going to be getting my blood work this Friday CBC and CA125 before I start my Hexalen on Monday. But I will also be having the newest biomarker HE4 done as well. I have been reading online and it looks like using the combination of HE4 and CA 125 will provide the highest level sensitivity and specificity out of all marker combinations for predicting the presence of ovarian cancer.

    My insurance told me they would pay for this test if it was kept in house. So I will be taking the order in and hope that the lab is up to date on this newest test.

    FYI

    Thanks,
    Libby

    Well Mom had another Chemo on New Years Eve.
    All of her bloodwork was pretty good this time. Hemo at 9.9, which is better than expected, guess my cooking is paying off. I jsut knew we were going to have to have another transfusion.
    Her Dr. who I jokingly make reference too as Mr. Talkative, was just concerned with how she was feeling, getting around, etc. TOld her that we took her on a 9 hr xmas shopping venture and at 12:30pm she was still going. Told him she was able to dress herself and for the most part handle the restroom activities. He never said much about her CA125 coming down to 89, other than that is looking pretty good. He ask me if she had had a CT Scan and I told him no that he had not ordered one. Well she has one on the 23rd now, so I guess that will tell us more? I wish I understood all of this. He ordered a CBC (which I am familiar with) but also a COMP something test, before the CT scan. They said they had to have it before they would do the scan, so I dont know what that is all about. Will the CT tell if the cancer has spread?
    I just dont get it, she is stronger, eating like a horse, becoming more independent(within reason) and cant wait to get out and go to the mall. The woman is stronger than I am. CA125 is coming down. Yet, I talk to the nurse, and she is almost gloomy with what she expects for an outcome. If you get to stage IV ( which I am taking as that there is fluid in the belly and plura that have ovarian cancer cells), which she had, but has not had any more issues with this since the beginning. Does that mean cancer spreads to these other organs if they find fluid. How do they test for that?

    Thanks for all of your wonderful support.

    Don

    " I may need a valium "
  • saundra
    saundra Member Posts: 1,370 Member
    #10
    The CT will show tumors that are over 0.5 cm in size, nothing smaller. Ovarian can spread to lymph nodes, bowels and other organs because there are so many lymph nodes in the abdomen. The COMP may have to do with testing for a reaction with the iodine dye given before the CT scan which can cause an allergic reaction. I knew I was allergic to it so I get premedicated before each scan with prednisone and benedryl which has eleminated the problem. The lowering of her CA125 shows that her tumors are responding to the chemo. That's good that they are shrinking. I also have to drink the bottle of barium before the CT scan and they do a little up the rectum when you get on the table. Personally that is the worst part of the test, it taste awful. l hold my breath and chug-a-lug as fast as I can but still gag. I have one ever 4 months and the last two have not shown anything.

    She may be getting steroids before the chemo, as I did. That makes you feel a little better and helps with the appetite. I never had loss of appetite and actually have gained 25 lbs and outgrown my clothes! I have had a lot of steroids because I react mildly to the chemo and dye. Little rash...

    I am really enjoying the vacation from chemo and being on the anti estrogen pill. It is so much easier to tolerate. Only side effect is the constant hot flashes which I can tolerate. This pill works on about 1/3 of the ovarian cancers and it is bringing down my CA125 number so far. (((Hugs))) Saundra
  • Dreamdove
    Dreamdove Member Posts: 175 Member
    #11
    DonTexas said:

    Well Mom had another Chemo on New Years Eve.
    All of her bloodwork was pretty good this time. Hemo at 9.9, which is better than expected, guess my cooking is paying off. I jsut knew we were going to have to have another transfusion.
    Her Dr. who I jokingly make reference too as Mr. Talkative, was just concerned with how she was feeling, getting around, etc. TOld her that we took her on a 9 hr xmas shopping venture and at 12:30pm she was still going. Told him she was able to dress herself and for the most part handle the restroom activities. He never said much about her CA125 coming down to 89, other than that is looking pretty good. He ask me if she had had a CT Scan and I told him no that he had not ordered one. Well she has one on the 23rd now, so I guess that will tell us more? I wish I understood all of this. He ordered a CBC (which I am familiar with) but also a COMP something test, before the CT scan. They said they had to have it before they would do the scan, so I dont know what that is all about. Will the CT tell if the cancer has spread?
    I just dont get it, she is stronger, eating like a horse, becoming more independent(within reason) and cant wait to get out and go to the mall. The woman is stronger than I am. CA125 is coming down. Yet, I talk to the nurse, and she is almost gloomy with what she expects for an outcome. If you get to stage IV ( which I am taking as that there is fluid in the belly and plura that have ovarian cancer cells), which she had, but has not had any more issues with this since the beginning. Does that mean cancer spreads to these other organs if they find fluid. How do they test for that?

    Thanks for all of your wonderful support.

    Don

    " I may need a valium "

    Having cancer doesn't have to mean doom and gloom
    Don, everybody always expects that when you get cancer you will be immobilized. I was not. I remained active. I had a good appetite and didn't feel sick to my stomach. I had stage 3c and a total histerectomy plus chemo every 3 weeks. I did everything I would normally do. I think that really helped. It is probably helping your Mom, too. I had a twelve year old daughter to take care of. I wanted to be well for her. A note about the CA-125: doctors like to see it get to 35 or below. Hopefully that will happen for your mom. She sounds like a lively one!

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