CA125

rose_marie
rose_marie Member Posts: 75
edited March 2014 in Ovarian Cancer #1
I was diagnosed with stage 3 ov cancer May 2006. Had the chemo treatments and surgery and more chemo. My CA125 tests have been now at every 6 months. Usually a 6 or 8. Changed health plans Jan 1, 2011. My last ca125 test was an 8 and that was Dec 2010. Had it done last week at new location and it was 213. I repeated the test yesterday and am sitting on pins and needles not knowing what is going on.
Can anyone out there give me some encouragement?
Sincerely,
Rosemarie

Comments

  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    Rosemarie.....I think just
    Rosemarie.....I think just reading that you have been NED since 2006 is encouraging to the rest of us! That is great! If you do, by chance, have a recurrence going on, your long remission is definitely in your favor. Chances are you will respond to the "big guns" (usually Carbo and Taxol) just as you did 5 years ago - with another long remission.

    A 200 point jump in 5 or 6 weeks sounds like a lot, but it's like spiking a fever - it could be a symptom of other stuff going on in your body. Don't panic. Your doctor will probably want to check for a trend. If your CA125 continues to rise steadily, then he will want to do a CT scan and either confirm or rule out a recurrence. That's my guess, anyway.

    I have been NED for almost a year and I totally understand. I dread any sign that might indicate the cancer has returned, almost more than death itself. It consumes my life. I have nightmares about it. It's like waiting for the other shoe to drop. My doctor recently tried to move me from monthly CA125 tests to every 3 months. I almost cried. We compromised on every 2 months.

    You can't influence or control what is going on inside you. Either the cancer has returned or it hasn't. First step is to answer that question.

    Second step, if it's back, is to make a plan to fight it. Don't waste time grieving for old NED. He's such a fickle **** anyway. Get your next chemo regimen started ASAP and get yourself mentally, emotionally, and physically ready for another fight. Concentrate on winning and you will feel less like giving up, I promise. Get angry. Mad as hell, in fact. Then channel all that anger and energy into getting well again.

    If the tests show there is no remission, the plan is to party like it's 1999. And buy yourself something nice. But either way, come back here and let us know what's going on. We will be on pins and needles with you. No matter where each of us is, there is always at least one other "sister" who will see herself in your story.

    Carlene
  • rose_marie
    rose_marie Member Posts: 75

    Rosemarie.....I think just
    Rosemarie.....I think just reading that you have been NED since 2006 is encouraging to the rest of us! That is great! If you do, by chance, have a recurrence going on, your long remission is definitely in your favor. Chances are you will respond to the "big guns" (usually Carbo and Taxol) just as you did 5 years ago - with another long remission.

    A 200 point jump in 5 or 6 weeks sounds like a lot, but it's like spiking a fever - it could be a symptom of other stuff going on in your body. Don't panic. Your doctor will probably want to check for a trend. If your CA125 continues to rise steadily, then he will want to do a CT scan and either confirm or rule out a recurrence. That's my guess, anyway.

    I have been NED for almost a year and I totally understand. I dread any sign that might indicate the cancer has returned, almost more than death itself. It consumes my life. I have nightmares about it. It's like waiting for the other shoe to drop. My doctor recently tried to move me from monthly CA125 tests to every 3 months. I almost cried. We compromised on every 2 months.

    You can't influence or control what is going on inside you. Either the cancer has returned or it hasn't. First step is to answer that question.

    Second step, if it's back, is to make a plan to fight it. Don't waste time grieving for old NED. He's such a fickle **** anyway. Get your next chemo regimen started ASAP and get yourself mentally, emotionally, and physically ready for another fight. Concentrate on winning and you will feel less like giving up, I promise. Get angry. Mad as hell, in fact. Then channel all that anger and energy into getting well again.

    If the tests show there is no remission, the plan is to party like it's 1999. And buy yourself something nice. But either way, come back here and let us know what's going on. We will be on pins and needles with you. No matter where each of us is, there is always at least one other "sister" who will see herself in your story.

    Carlene

    CA125 NED?
    Thanks for the encouragment Carlene. As you can probably tell, I am very new at this site. In fact, today is my first day on. Next, please explain to me what is NED?

    I just don't understand why it came back (if it did, that is). I responded so well to the "big guns" chemo treatments in 2006. My CA125 at the start was 2950, a far cry from 0-30. Just after my frist chemo, it dropped 600 points and continued to drop 500 points there after each chemo.

    I guess I was starting to feel like I really beat this thing.

    I'm calling Kaiser as I type to find out the results of my test from yesterday. The nurse just said that she is not a liberty to give that info out! I asked her if she could just tell me if it was higher or lower than the one last week and she said higher!
    I can't talk to my doctor until Monday morning. In fact I can't think straight either!
    Rosemarie
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834

    CA125 NED?
    Thanks for the encouragment Carlene. As you can probably tell, I am very new at this site. In fact, today is my first day on. Next, please explain to me what is NED?

    I just don't understand why it came back (if it did, that is). I responded so well to the "big guns" chemo treatments in 2006. My CA125 at the start was 2950, a far cry from 0-30. Just after my frist chemo, it dropped 600 points and continued to drop 500 points there after each chemo.

    I guess I was starting to feel like I really beat this thing.

    I'm calling Kaiser as I type to find out the results of my test from yesterday. The nurse just said that she is not a liberty to give that info out! I asked her if she could just tell me if it was higher or lower than the one last week and she said higher!
    I can't talk to my doctor until Monday morning. In fact I can't think straight either!
    Rosemarie

    NED = "no evidence of
    NED = "no evidence of disease", per clear CT (or other) scan and a normal CA125. It is the same thing as remission. We call it "dancing with NED". Nothing like a little cancer humor, right?

    Statistically, 80% of all women diagnosed with late stage (stage III or IV) OC will have a full remission after first line chemo. After that, it's a waiting game, and the odds are, we will all have a recurrence, eventually. Most will recur within one year. After two years, you have a great chance of being NED forever, about a 75% chance, in fact. It's the not knowing what the future holds that makes me crazy. I think that's why I can't ignore the stats. I am trying to prepare myself for a recurrence, because that's what happens in the majority of cases.

    But don't panic until you know for sure. There is plenty of time for that afterward.

    Will you stay with Kaiser for treatment after you go on Medicare? I would have a huge problem with their policy regarding MY information. I call in the afternoon, after my CA125 is drawn in the morning, and the nurse gives me the result. The day they decide I don't have a right to know what my numbers are, that's the day I change doctors.

    Carlene
  • rose_marie
    rose_marie Member Posts: 75

    NED = "no evidence of
    NED = "no evidence of disease", per clear CT (or other) scan and a normal CA125. It is the same thing as remission. We call it "dancing with NED". Nothing like a little cancer humor, right?

    Statistically, 80% of all women diagnosed with late stage (stage III or IV) OC will have a full remission after first line chemo. After that, it's a waiting game, and the odds are, we will all have a recurrence, eventually. Most will recur within one year. After two years, you have a great chance of being NED forever, about a 75% chance, in fact. It's the not knowing what the future holds that makes me crazy. I think that's why I can't ignore the stats. I am trying to prepare myself for a recurrence, because that's what happens in the majority of cases.

    But don't panic until you know for sure. There is plenty of time for that afterward.

    Will you stay with Kaiser for treatment after you go on Medicare? I would have a huge problem with their policy regarding MY information. I call in the afternoon, after my CA125 is drawn in the morning, and the nurse gives me the result. The day they decide I don't have a right to know what my numbers are, that's the day I change doctors.

    Carlene

    Kaiser
    Thanks Carlene for the NED explanation. Perhaps that is what I am going through. I am still a little upset about only knowing that my ca125 has gone up from 231 two weeks ago. The nurse said I could wait for a doctor to call me back with the exact numbers but why talk to someone I don'e even know just because he has a higher lever of education than the nurse.
    To be honest with you, I like Kaiser very much. Everyone there was so good to me and my husband when we were going in for my chemo treatmenst every 21 days. A nurse aways fixed us some nice hot soup and tea if we wanted it. Kelly, the NP was also great.
    You're right about not being told about my tests over the phone, though.
    Last night my girlfriend and I went to SF to the ballet. It was a great way to forget my problems for a few hours. It didn't start to rain until much later and I was safely home and warm in my bed with Allen, my rock of a husband.
    Carlene, I don't know if I were you, I would want to prepare myself for a recurrence. I have been able to think and feel, "my cancer is in remission, period" I have really enjoyed life again and I think I am living it to the fullest. Now, I may have come across a bump in the road or perhaps NED! We will move on and get over this that I know for sure.
    Carlene thanks for your much needed support.
    Rosemarie
  • rose_marie
    rose_marie Member Posts: 75

    NED = "no evidence of
    NED = "no evidence of disease", per clear CT (or other) scan and a normal CA125. It is the same thing as remission. We call it "dancing with NED". Nothing like a little cancer humor, right?

    Statistically, 80% of all women diagnosed with late stage (stage III or IV) OC will have a full remission after first line chemo. After that, it's a waiting game, and the odds are, we will all have a recurrence, eventually. Most will recur within one year. After two years, you have a great chance of being NED forever, about a 75% chance, in fact. It's the not knowing what the future holds that makes me crazy. I think that's why I can't ignore the stats. I am trying to prepare myself for a recurrence, because that's what happens in the majority of cases.

    But don't panic until you know for sure. There is plenty of time for that afterward.

    Will you stay with Kaiser for treatment after you go on Medicare? I would have a huge problem with their policy regarding MY information. I call in the afternoon, after my CA125 is drawn in the morning, and the nurse gives me the result. The day they decide I don't have a right to know what my numbers are, that's the day I change doctors.

    Carlene

    Kaiser
    Thanks Carlene for the NED explanation. Perhaps that is what I am going through. I am still a little upset about only knowing that my ca125 has gone up from 231 two weeks ago. The nurse said I could wait for a doctor to call me back with the exact numbers but why talk to someone I don'e even know just because he has a higher lever of education than the nurse.
    To be honest with you, I like Kaiser very much. Everyone there was so good to me and my husband when we were going in for my chemo treatmenst every 21 days. A nurse aways fixed us some nice hot soup and tea if we wanted it. Kelly, the NP was also great.
    You're right about not being told about my tests over the phone, though.
    Last night my girlfriend and I went to SF to the ballet. It was a great way to forget my problems for a few hours. It didn't start to rain until much later and I was safely home and warm in my bed with Allen, my rock of a husband.
    Carlene, I don't know if I were you, I would want to prepare myself for a recurrence. I have been able to think and feel, "my cancer is in remission, period" I have really enjoyed life again and I think I am living it to the fullest. Now, I may have come across a bump in the road or perhaps NED! We will move on and get over this that I know for sure.
    Carlene thanks for your much needed support.
    Rosemarie
  • Tethys41
    Tethys41 Member Posts: 1,376 Member
    I Beg To Differ
    Rosemarie,

    I can't imagine how awful it is to have this going on with your CA-125. Hopefully it is just a glitch. I dont' agree, however, that you have no control over what goes on in your body. I was diagnosed with stage IIIc ovarian cancer a year and a half ago. I did the surgery and the chemo, but I also did a lot of integrative treatments and alternative stuff. I have posted the information below in another post, but will post it again for your benefit.

    I work with a naturopath who had stage IV ovarian cancer 20 years ago. She treated herself and is healthy today, but still carries around the tumors, so is very careful about what she eats and does. I am doing what she does to keep me from having a recurrance. A few things you may want to consider:

    No sugar! Only stevia, xylitol, occasional agave.
    Only grass fed and finished meat. All organic, hormone and antibiotic free.
    We don't eat any soy that isn't fermented (including no tofu). Too much like hormones which can aggravate some cancers.
    No iron supplements. Iron can aggravate cancer.
    No gluten. My naturopath believes that there is a link between gluten intolerance
    (which she beleives most of the population has to some degree) and cancer.
    No grains except millet, quinoa, and buckwheat. Rice has too much sugar and is acidic.
    Resveratrol is a great antioxidant. I was advised not to take resveratrol for two days
    before and two days after chemo, and to discontinue CQ-10 for the whole time I was
    having treatments.
    Also, no using plastic food containers (glass only); no plastic water bottles; no plastic
    wrap; no non-stick cookware.
    Reduce stress and do what it takes to get a good nights sleep every night,
    take 20 mg melatonin before bed. Get regular exercise.
    No alcohol or caffeine, except for green tea. She also recommends Tulsi tea.
    I received (an am still receiving) IV C throughout my chemo treatments (60 - 75grams each).
    Also nutirional IVs. On days I don't receive IVC, I take 1,000mg of liposomal vitamin C or
    liposheric vitamin C or a supplement called BIOfizz, which tastes better than the other
    two.
    2 grams of curcumin daily. If on chemo, don't take two days before and after treatment.
    5,000 IU of vitamin D3 daily.
    4 grams of fish oil daily.
    Eat cruciferous vegetables 5 times per week.
    Eat a lot of raspberries.
    Dark chocolate (80% or more) is actually okay.
    Cinnamon with meals helps keep the blood sugar under control, which is important.
    The "Cancer Fighting Kitchen Cookbook" is a great resource. Anti-Cancer is another great book.

    My Gyn/Onc says he has patients who are in remission, who's CA-125 are as high as 190 and they have opted not to do chemo again. I don't know, if they are doing anything in it's place. I've heard of doctors giving the vitamin C IV's in place of chemo. I'm not advocating that you pass on chemo if your doctor advises it. I am saying, however, that there are things you can do now that should stop it in it's tracks. There is also a product, that is rather expensive, but it is supposed to kill cancer. It's called Haelan 951. You can Google it to find out more. I am taking it now because my naturopath says it kills the cancer stem cells that my have survived chemo.

    My naturopath has had her CA-125 go as high as 55 if she is not following this plan, but it goes back down if she sticks to it. So, as I said, I don't believe that you have no control over what is going on in your body.

    Good luck to you,
    Kate
  • rose_marie
    rose_marie Member Posts: 75
    Tethys41 said:

    I Beg To Differ
    Rosemarie,

    I can't imagine how awful it is to have this going on with your CA-125. Hopefully it is just a glitch. I dont' agree, however, that you have no control over what goes on in your body. I was diagnosed with stage IIIc ovarian cancer a year and a half ago. I did the surgery and the chemo, but I also did a lot of integrative treatments and alternative stuff. I have posted the information below in another post, but will post it again for your benefit.

    I work with a naturopath who had stage IV ovarian cancer 20 years ago. She treated herself and is healthy today, but still carries around the tumors, so is very careful about what she eats and does. I am doing what she does to keep me from having a recurrance. A few things you may want to consider:

    No sugar! Only stevia, xylitol, occasional agave.
    Only grass fed and finished meat. All organic, hormone and antibiotic free.
    We don't eat any soy that isn't fermented (including no tofu). Too much like hormones which can aggravate some cancers.
    No iron supplements. Iron can aggravate cancer.
    No gluten. My naturopath believes that there is a link between gluten intolerance
    (which she beleives most of the population has to some degree) and cancer.
    No grains except millet, quinoa, and buckwheat. Rice has too much sugar and is acidic.
    Resveratrol is a great antioxidant. I was advised not to take resveratrol for two days
    before and two days after chemo, and to discontinue CQ-10 for the whole time I was
    having treatments.
    Also, no using plastic food containers (glass only); no plastic water bottles; no plastic
    wrap; no non-stick cookware.
    Reduce stress and do what it takes to get a good nights sleep every night,
    take 20 mg melatonin before bed. Get regular exercise.
    No alcohol or caffeine, except for green tea. She also recommends Tulsi tea.
    I received (an am still receiving) IV C throughout my chemo treatments (60 - 75grams each).
    Also nutirional IVs. On days I don't receive IVC, I take 1,000mg of liposomal vitamin C or
    liposheric vitamin C or a supplement called BIOfizz, which tastes better than the other
    two.
    2 grams of curcumin daily. If on chemo, don't take two days before and after treatment.
    5,000 IU of vitamin D3 daily.
    4 grams of fish oil daily.
    Eat cruciferous vegetables 5 times per week.
    Eat a lot of raspberries.
    Dark chocolate (80% or more) is actually okay.
    Cinnamon with meals helps keep the blood sugar under control, which is important.
    The "Cancer Fighting Kitchen Cookbook" is a great resource. Anti-Cancer is another great book.

    My Gyn/Onc says he has patients who are in remission, who's CA-125 are as high as 190 and they have opted not to do chemo again. I don't know, if they are doing anything in it's place. I've heard of doctors giving the vitamin C IV's in place of chemo. I'm not advocating that you pass on chemo if your doctor advises it. I am saying, however, that there are things you can do now that should stop it in it's tracks. There is also a product, that is rather expensive, but it is supposed to kill cancer. It's called Haelan 951. You can Google it to find out more. I am taking it now because my naturopath says it kills the cancer stem cells that my have survived chemo.

    My naturopath has had her CA-125 go as high as 55 if she is not following this plan, but it goes back down if she sticks to it. So, as I said, I don't believe that you have no control over what is going on in your body.

    Good luck to you,
    Kate

    Great Info
    Dear Kate,
    Thanks for all the wonderful information you have given me. Seems like a lot, but if broken down seems very do-able. I will go on Amazon and get the cookbook you mention. I have heard about sugars and cancer and I have also heard that is also a myth. Also, I have read that blueberries are also a great antioxident like the raspberries. I have blue berries on my ceral every moring with a handful of sliced almonds and chopped walnuts. I do not eat white bread/flour and haven't in many many years.
    Not a coffee drinker nor alcholol nor do I or ever smoked.

    My CT scan is scheduled for this Friday Feb 4th. Follow up with doctor the following week. My ca125 jumped another 71 points to 302.
    Thanks again for all the great information. Will let you know how it all plays out.
    Rosemarie
  • Tethys41
    Tethys41 Member Posts: 1,376 Member

    Great Info
    Dear Kate,
    Thanks for all the wonderful information you have given me. Seems like a lot, but if broken down seems very do-able. I will go on Amazon and get the cookbook you mention. I have heard about sugars and cancer and I have also heard that is also a myth. Also, I have read that blueberries are also a great antioxident like the raspberries. I have blue berries on my ceral every moring with a handful of sliced almonds and chopped walnuts. I do not eat white bread/flour and haven't in many many years.
    Not a coffee drinker nor alcholol nor do I or ever smoked.

    My CT scan is scheduled for this Friday Feb 4th. Follow up with doctor the following week. My ca125 jumped another 71 points to 302.
    Thanks again for all the great information. Will let you know how it all plays out.
    Rosemarie

    Good Luck
    I'll be thinking about you.