Disappointing CA125 Results

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Disneynutt
Disneynutt Member Posts: 134 Member
edited March 2014 in Ovarian Cancer #1
I have been on chemo for 8 months now. I started with Carbo/Gemzar but had to be switched to Taxol when the CA125 numbers didn't come down fast enough plus I had to keep delaying chemos because of low blood counts. I've had 3 treatments with the new drugs and at first my number went down almost 20 points. This last test it went down only 3. I'm scared my cancer becomes resistant very quickly or maybe it's high stress levels? I do have a rather stressful existence lately and read recently that high stress levels can adversely affect the efficacy of chemo chemicals.

Regardless, I'm disappointed and distressed. My chemo doctor says at least the numbers are going down but in my opinion not fast enough.

Well, thanks for letting me vent.

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  • nancy591
    nancy591 Member Posts: 1,027 Member
    #2
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    NUMBERS!
    How high is your ca125? I worry about resistance too. My ca125 is really not dropping with Doxil. My number is low though...so it may not be a reliable marker for me. I haven't heard of chemo and stress. But...chemo is stressful. Having cancer is stressful. When is your next scan? That should tell the real pictures.

    Oh, are you a disney nut? Orlando or CA? I'm a big fan too.
    Good luck!!!!
  • Disneynutt
    Disneynutt Member Posts: 134 Member
    #3
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    nancy591 said:

    NUMBERS!
    How high is your ca125? I worry about resistance too. My ca125 is really not dropping with Doxil. My number is low though...so it may not be a reliable marker for me. I haven't heard of chemo and stress. But...chemo is stressful. Having cancer is stressful. When is your next scan? That should tell the real pictures.

    Oh, are you a disney nut? Orlando or CA? I'm a big fan too.
    Good luck!!!!

    Numbers
    Hi Nancy. I live in Florida so it's WDW for me. I haven't been to Disneyland since 1959 believe it or not. :-) Love the World!!! But rarely get to go.

    My CA125 is down to 70 but that's after 8 months. It went from 95 to 73 after the first Carbo/Taxol and then only to 70. So disappointing. I have another chemo next Tuesday and I must say it is the first time I dread it. I get Neupogen after the chemo and it makes me very ill for 5 days so I'm not looking forward to it.

    You are lucky your number is low. That's what we all shoot for.
  • froggy1
    froggy1 Member Posts: 205
    #4
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    Disneynutt said:

    Numbers
    Hi Nancy. I live in Florida so it's WDW for me. I haven't been to Disneyland since 1959 believe it or not. :-) Love the World!!! But rarely get to go.

    My CA125 is down to 70 but that's after 8 months. It went from 95 to 73 after the first Carbo/Taxol and then only to 70. So disappointing. I have another chemo next Tuesday and I must say it is the first time I dread it. I get Neupogen after the chemo and it makes me very ill for 5 days so I'm not looking forward to it.

    You are lucky your number is low. That's what we all shoot for.

    Hi Disneynutt
    Hi Nutt,
    'Sorry to hear things aren't going the way you want. I am near Disneyworld. What part of Florida do you live in? We might be chemo buddies and not even know it!
    My counts are down for now, for which I am thankful. I had carbo/taxo first, then was put on maintenance.
    I really hope things turn around for you.

    Luv, Froggy
  • Disneynutt
    Disneynutt Member Posts: 134 Member
    #5
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    froggy1 said:

    Hi Disneynutt
    Hi Nutt,
    'Sorry to hear things aren't going the way you want. I am near Disneyworld. What part of Florida do you live in? We might be chemo buddies and not even know it!
    My counts are down for now, for which I am thankful. I had carbo/taxo first, then was put on maintenance.
    I really hope things turn around for you.

    Luv, Froggy

    Hi froggy. I live in Ocala.
    Hi froggy. I live in Ocala. I wish I could get to WDW more often but have too many responsibilities up here to . I'm glad your counts are down. I am quite envious actually. It would be nice not to have this burden on my mind; plus I'm a worrier anyway. :-)
    Do you have an annual pass to the World?
  • nancy591
    nancy591 Member Posts: 1,027 Member
    #6
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    Disneynutt said:

    Numbers
    Hi Nancy. I live in Florida so it's WDW for me. I haven't been to Disneyland since 1959 believe it or not. :-) Love the World!!! But rarely get to go.

    My CA125 is down to 70 but that's after 8 months. It went from 95 to 73 after the first Carbo/Taxol and then only to 70. So disappointing. I have another chemo next Tuesday and I must say it is the first time I dread it. I get Neupogen after the chemo and it makes me very ill for 5 days so I'm not looking forward to it.

    You are lucky your number is low. That's what we all shoot for.

    not so luck
    Not lucky, ca125 is not reliable for me. When I had a confirmed recurrence I was at 10. My number is now 18 or 19, I forget. Down from 30. Is the carbo/gemzr for your first recurrence? What were you staged at? This is my first recurrence from a 7-8 month remission. I will have another ca125 and my 6th infusion on May 6th. If my number goes up they will do a PET/CT. If Doxil is not working I will probably go on Topo. I've been looking into trials. There are 2 trials now with Topo and a 2nd agent.

    I love WDW too. Hopefully we will go again right before school starts in the Fall.
  • froggy1
    froggy1 Member Posts: 205
    #7
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    Disneynutt said:

    Hi froggy. I live in Ocala.
    Hi froggy. I live in Ocala. I wish I could get to WDW more often but have too many responsibilities up here to . I'm glad your counts are down. I am quite envious actually. It would be nice not to have this burden on my mind; plus I'm a worrier anyway. :-)
    Do you have an annual pass to the World?

    To Disneynutt
    We don't have annual passes right now. We get tired out(hard to believe) of Disney sometimes. Also, a little thing like cancer and chemo seemed to get in the way! The prices have also gone way up. Even though they are reasonable, you still have to go quite often to make it worthwhile. Froggy
  • froggy1
    froggy1 Member Posts: 205
    #8
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    nancy591 said:

    not so luck
    Not lucky, ca125 is not reliable for me. When I had a confirmed recurrence I was at 10. My number is now 18 or 19, I forget. Down from 30. Is the carbo/gemzr for your first recurrence? What were you staged at? This is my first recurrence from a 7-8 month remission. I will have another ca125 and my 6th infusion on May 6th. If my number goes up they will do a PET/CT. If Doxil is not working I will probably go on Topo. I've been looking into trials. There are 2 trials now with Topo and a 2nd agent.

    I love WDW too. Hopefully we will go again right before school starts in the Fall.

    for Nancy -recurrence
    Hi Nancy,
    If I might ask, how did you know you were having a recurrence if your counts were so good? My Doc seems to rely on the counts 100%, which makes me nervous! Froggy
  • nancy591
    nancy591 Member Posts: 1,027 Member
    #9
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    froggy1 said:

    for Nancy -recurrence
    Hi Nancy,
    If I might ask, how did you know you were having a recurrence if your counts were so good? My Doc seems to rely on the counts 100%, which makes me nervous! Froggy

    testing
    Do you have scans? My ct scans were clear but I started having bowel symptoms. Symptoms like a bowel obstruction. I'd go to the ER and there was never an obstruction. I was having these occurences once a month. My ca125 at the time was going up like 2points every 3 months. My surgeon said if my ca125 goes up again she will want a PET/CT. That is a combo PET and CT scan done together. Well, my ct was clear but the pet showed a 13mm spot on my colon. I had a colonoscopy in December and it confirmed recurrent ovarian. My ca125 at that time had dropped from 12 to 10.

    Just so you know. I don't think being treated earlier improves life expectancy. Some doctors wait until you are symptomatic before 'looking' more closely. My oncologist thinks I may have still been 'undiscovered' if not for my surgeon ordering the PET/CT.
  • leesag
    leesag Member Posts: 621 Member
    #10
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    Disneynutt said:

    Numbers
    Hi Nancy. I live in Florida so it's WDW for me. I haven't been to Disneyland since 1959 believe it or not. :-) Love the World!!! But rarely get to go.

    My CA125 is down to 70 but that's after 8 months. It went from 95 to 73 after the first Carbo/Taxol and then only to 70. So disappointing. I have another chemo next Tuesday and I must say it is the first time I dread it. I get Neupogen after the chemo and it makes me very ill for 5 days so I'm not looking forward to it.

    You are lucky your number is low. That's what we all shoot for.

    hi Disneymutt
    My numbers recently nosedived from a high of almost 10,000 to 86, after surgery and two carbo/taxol. My doctor warned me, however, that from now on the decreases would probably be baby steps. She also reminded me that down is the right direction. I feel your pain (literally) with the Neupogen. Hang in there and know that you've been added to my prayer list!

    Hugs

    Leea
  • froggy1
    froggy1 Member Posts: 205
    #11
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    nancy591 said:

    testing
    Do you have scans? My ct scans were clear but I started having bowel symptoms. Symptoms like a bowel obstruction. I'd go to the ER and there was never an obstruction. I was having these occurences once a month. My ca125 at the time was going up like 2points every 3 months. My surgeon said if my ca125 goes up again she will want a PET/CT. That is a combo PET and CT scan done together. Well, my ct was clear but the pet showed a 13mm spot on my colon. I had a colonoscopy in December and it confirmed recurrent ovarian. My ca125 at that time had dropped from 12 to 10.

    Just so you know. I don't think being treated earlier improves life expectancy. Some doctors wait until you are symptomatic before 'looking' more closely. My oncologist thinks I may have still been 'undiscovered' if not for my surgeon ordering the PET/CT.

    Thanks Nancy
    Thanks for the info. Your story makes me realize how this disease presents itself in so many different ways. I did have a PET after my initial carbo/taxo of 8, which was clear. I then decided to do maintenance, during which my CA125 was monitored constantly. Along the way, I did the ER thing many times, but did really have a bowel obstruction, so in November had a bowel resection(actually in two places.)The cause was scar tissue. The doctor, at that time, said I got a "free"second look cancer screening. Ha!
    Right now, 'still finishing the maintenance chemo, but starting to feel "weird." This just started. My Doc seems to feel, for me, the CA125 is a good marker, but I'm not sure. He also said if I form scar tissue once, I will probably do it again- great, huh? I guess we are always looking for what is lurking around the next corner. My best to you.. Ginny
  • kayandok
    kayandok Member Posts: 1,202 Member
    #12
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    Vent away!!!
    Dear Nut, I understand your frustrations!! And we all go through them to one level or another. We always hear and tell ourselves not to obsess with the number, but most of us are guilty of it at one point or another.
    Take care and hoping you feel better soon and get some good results from all that chemo!
    kathleen:)
  • msfanciful
    msfanciful Member Posts: 559
    #13
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    Hi there,
    Don't let the
    Hi there,

    Don't let the numbers stress you so. I've been guilty of watching my numbers go up and down too and then you just have to let go of the fact that you're only making matters worse with keeping a count so to speak.

    I'm at my 3rd? 4th? recurrence and my numbers had been steadily creeping upwards until I began maintenance of taxol. My maintenance consists of once-a-week infusions; but currently my numbers dropped from 62 to 36 in the three weeks since I began the maintenance.

    My doctor wants to continue the treatments until (as she puts it "we knock them all the way down"). LOL!

    Also, this whole thing with how well we do with our treatments is all about finding the right treatment for our body and them BAM! ! we've found a pretty effective solution. So it's important not to give up and continue to exhaust all avenues until we do find what works for us.

    So try not to stress too much.

    Sharon
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #14
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    Disneynutt said:

    Numbers
    Hi Nancy. I live in Florida so it's WDW for me. I haven't been to Disneyland since 1959 believe it or not. :-) Love the World!!! But rarely get to go.

    My CA125 is down to 70 but that's after 8 months. It went from 95 to 73 after the first Carbo/Taxol and then only to 70. So disappointing. I have another chemo next Tuesday and I must say it is the first time I dread it. I get Neupogen after the chemo and it makes me very ill for 5 days so I'm not looking forward to it.

    You are lucky your number is low. That's what we all shoot for.

    Hi Disney Nutt
    I am the same as you. My current CA 125 is 65. I've just finished 6 rounds of carbo/taxol and I was hoping my numbers would have been lower than that. I was 1119 at diagnosis and they have dropped really well during my treatment. Because I have finished chemo now, I have another blood test in June so I am wondering if it will go up or stay the same????

    Does anyone know - is the chemo still in my body working? My last chemo was 26th March. My doctor did talk about the next CA 125 being my "base line" marker.

    Tina
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #15
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    msfanciful said:

    Hi there,
    Don't let the
    Hi there,

    Don't let the numbers stress you so. I've been guilty of watching my numbers go up and down too and then you just have to let go of the fact that you're only making matters worse with keeping a count so to speak.

    I'm at my 3rd? 4th? recurrence and my numbers had been steadily creeping upwards until I began maintenance of taxol. My maintenance consists of once-a-week infusions; but currently my numbers dropped from 62 to 36 in the three weeks since I began the maintenance.

    My doctor wants to continue the treatments until (as she puts it "we knock them all the way down"). LOL!

    Also, this whole thing with how well we do with our treatments is all about finding the right treatment for our body and them BAM! ! we've found a pretty effective solution. So it's important not to give up and continue to exhaust all avenues until we do find what works for us.

    So try not to stress too much.

    Sharon

    Sharon
    Sharon you go girl. You always manage to make me feel better with your positive outlook on life and cancer. Thank-you.

    Keep you the fight, Tina xxx
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #16
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    Tina Brown said:

    Hi Disney Nutt
    I am the same as you. My current CA 125 is 65. I've just finished 6 rounds of carbo/taxol and I was hoping my numbers would have been lower than that. I was 1119 at diagnosis and they have dropped really well during my treatment. Because I have finished chemo now, I have another blood test in June so I am wondering if it will go up or stay the same????

    Does anyone know - is the chemo still in my body working? My last chemo was 26th March. My doctor did talk about the next CA 125 being my "base line" marker.

    Tina

    For Tina....
    Everything I have read says it can take up to 90 days after you complete chemo to reach your CA 125 nadir (low point).

    My last active treatment was the last week of February. My first lab check after chemo said 12 on the CA 125, but the one after that was 6.

    I am doing monthly taxol maintenance and the goal is not about lowering my CA 125 at this point, but it may be a side benefit....who knows?

    You also have to bear in mind that for some people, the CA 125 just isn't an accurate indication of tumor activity. Nancy's was 10 when she had a confirmed recurrence. Doctors look for a trend, rather than specific numbers. If yours is going steadily down, that's a good thing, and much more important than getting into single digits.

    Carlene
  • Disneynutt
    Disneynutt Member Posts: 134 Member
    #17
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    Tina Brown said:

    Sharon
    Sharon you go girl. You always manage to make me feel better with your positive outlook on life and cancer. Thank-you.

    Keep you the fight, Tina xxx

    Oh Oh
    Thank you for all your responses ladies. You are a courageous great group of people and I appreciate your words.
    I just talked to my oncologist who said that my numbers "are not good, this is not good". I, of course, took this as a death sentence. She is going to try another chemical but insurance might not pay because it's so expensive. I am a wreck right now sorry to say but I shall try to be more positive.

    Anybody had "down" times and had them turn around?

    I hope you all have a magical day.
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #18
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    Hissy_Fitz said:

    For Tina....
    Everything I have read says it can take up to 90 days after you complete chemo to reach your CA 125 nadir (low point).

    My last active treatment was the last week of February. My first lab check after chemo said 12 on the CA 125, but the one after that was 6.

    I am doing monthly taxol maintenance and the goal is not about lowering my CA 125 at this point, but it may be a side benefit....who knows?

    You also have to bear in mind that for some people, the CA 125 just isn't an accurate indication of tumor activity. Nancy's was 10 when she had a confirmed recurrence. Doctors look for a trend, rather than specific numbers. If yours is going steadily down, that's a good thing, and much more important than getting into single digits.

    Carlene

    For Carlene
    Thank-you so much. I know I can always rely on you to offer such words of wisdom and it always makes me feel much better. I truely think you are an angel in disguise. Much love Tina xx

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