Rising CA 125

Tina Brown
Tina Brown Member Posts: 1,036 Member
edited March 2014 in Ovarian Cancer #1
Hiya everyone. Just been for my 5 month post chemo check up. My previous CA 125 was 34 but it has risen to 71. I was soooo upset and disappointed. I was feeling so well. All other blood markers are good (liver, kidney etc) and I have no sign of any ascites. My docs don't want to see me again for another 2 months and have also ordered a CT scan to see what is happening. I had a partial reposnse from my last chemo.

I know I have read somewhere on these boards that CA 125 is not always a reliable measure for our cancer. Can anyone confirm that? They said that I may go back on chemo - carboplatin/taxol as I had such a good response last time.

Any thoughts please?

Tina xx

Comments

  • nancy591
    nancy591 Member Posts: 1,027 Member
    #2
    May I be so bold..
    Hello Tina,
    I want you to know that I care for you dearly, as I care for everyone on this board. A rise in ca125 is disappointing....believe me, I know!!!

    If your scan does show cancer activity my doctors at Memorial Sloan Kettering would NOT resume carbo/taxol. To be frank, a partial response is not good enough. You would probably benefit from different. If you have a recurrence in less then 6 months you would be considered platinum resistant. I believe the standard of practice here in the USA is if you have a recurrence in less then 6 months they treat you with different chemo the 2nd time around. I've also read if a women has a recurrence in <6months they benefit more from single agent chemo. Being that you had a 'partial response' I'm not sure where that leaves you.

    If does turn out to be cancer please know that there are other viable options for you. I had a recurrence confirmed 8months out of chemo. I know how scary it is.
  • Tasgirl
    Tasgirl Member Posts: 85
    #3
    Hi Tina
    So sorry to hear
    Hi Tina
    So sorry to hear about the rise in CA125 BUT it does not always indicate a return - mine is 18 and I have enlarged metatasied (Spelling)lymph nodes so please try and stay strong until you have your scan. My oncologist said I could have the same carbo/taxol as I finished chemo March 2009 but the longer you can hold off the better. Jenny
  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #4
    Tasgirl said:

    Hi Tina
    So sorry to hear
    Hi Tina
    So sorry to hear about the rise in CA125 BUT it does not always indicate a return - mine is 18 and I have enlarged metatasied (Spelling)lymph nodes so please try and stay strong until you have your scan. My oncologist said I could have the same carbo/taxol as I finished chemo March 2009 but the longer you can hold off the better. Jenny

    Single agent weekly dense dose taxol maybe?
    My chemo oncologist is trying to hold back returning to carboplatin until 24 months have passed since I last had it (last carbo-platin for me was 3/26/09), so that I will have my best shot at it being effective again,..and saving it for when I really need a tried-and-true chemo for something scary like mets to a vital organ. Meanwhile I've taken single agent weekly taxol, with great results the 1st recurrence (CT/Pet showed No Evidence of Disease after 10 rounds). When my 2nd remission ended 4 1/2 months later we went back to the single agent taxol and it dropped my CA125 for the 1st 5 rounds, but started to rise after the last 2 rounds. So I'm getting a CT/Pet scan Thursday to see what's going on. And I'm pretty sure I'll be switching to Doxil. My CA125 was 11 at its lowest; was 45 the last time I went into remission; and was 83 last Monday. My chemo-oncologist considers "mid-40's" my new normal CA125 since that's what it was during my last remission. So everyone is different when it comes to CA125. When I had my recurrences my CA125 really SPIKED at my 3-month check-ups, jumping from 11 to 155 the 1st time; and from 34 to 130 the 2nd time.

    I don't know if this helps, but it gives you some idea how crazy CA125 can be as an indicator. Try not to worry (easier said than done). I agree with Nancy's suggestion that it sounds soon to return to carboplatin. And single agent taxol was such an EASY chemo for me as far as feeling great almost all of the time I took it. But I'm not an oncologist, of course, and everyone's cancer is so individualized.
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #5
    lindaprocopio said:

    Single agent weekly dense dose taxol maybe?
    My chemo oncologist is trying to hold back returning to carboplatin until 24 months have passed since I last had it (last carbo-platin for me was 3/26/09), so that I will have my best shot at it being effective again,..and saving it for when I really need a tried-and-true chemo for something scary like mets to a vital organ. Meanwhile I've taken single agent weekly taxol, with great results the 1st recurrence (CT/Pet showed No Evidence of Disease after 10 rounds). When my 2nd remission ended 4 1/2 months later we went back to the single agent taxol and it dropped my CA125 for the 1st 5 rounds, but started to rise after the last 2 rounds. So I'm getting a CT/Pet scan Thursday to see what's going on. And I'm pretty sure I'll be switching to Doxil. My CA125 was 11 at its lowest; was 45 the last time I went into remission; and was 83 last Monday. My chemo-oncologist considers "mid-40's" my new normal CA125 since that's what it was during my last remission. So everyone is different when it comes to CA125. When I had my recurrences my CA125 really SPIKED at my 3-month check-ups, jumping from 11 to 155 the 1st time; and from 34 to 130 the 2nd time.

    I don't know if this helps, but it gives you some idea how crazy CA125 can be as an indicator. Try not to worry (easier said than done). I agree with Nancy's suggestion that it sounds soon to return to carboplatin. And single agent taxol was such an EASY chemo for me as far as feeling great almost all of the time I took it. But I'm not an oncologist, of course, and everyone's cancer is so individualized.

    I guess we are not so
    I guess we are not so advanced here in the UK as the states. I think the doctor was being very honest with me and very cautious. I just heard the words "go back on chemo" and that really upset me because I know the longer you go in between each one the better. The scan will give a clearer picture. When I finished chemo the CA 125 was 65, then it dipped to 34 & now it is 71. Maybe that is a pattern for me. I'm sure the doctors were just being vigilant & maybe my CA 125 will be stable next time.

    I did question whether I could have the same one again and they said I responded well to it before & was not ill on it. I don't really want to question their decision as they are the experts and my hospital has a fabulous reputation in the UK for cancer. My husband was with me and he is very positive (which is a good sign because he is normally negative about things)

    Thanks for your concerns Tina xxxx
  • softD
    softD Member Posts: 69
    #6
    Tina Brown said:

    I guess we are not so
    I guess we are not so advanced here in the UK as the states. I think the doctor was being very honest with me and very cautious. I just heard the words "go back on chemo" and that really upset me because I know the longer you go in between each one the better. The scan will give a clearer picture. When I finished chemo the CA 125 was 65, then it dipped to 34 & now it is 71. Maybe that is a pattern for me. I'm sure the doctors were just being vigilant & maybe my CA 125 will be stable next time.

    I did question whether I could have the same one again and they said I responded well to it before & was not ill on it. I don't really want to question their decision as they are the experts and my hospital has a fabulous reputation in the UK for cancer. My husband was with me and he is very positive (which is a good sign because he is normally negative about things)

    Thanks for your concerns Tina xxxx

    Rising ca125
    Hi Tina,
    My marker is on the rise too :-/
    I had a false reading a while ago after suffering bowel obstructions (which resolved themselves after 2 weeks). My ca125 however remained elevated for some time after, apparently as a result of an inflammatory response to the obstuctions.
    The Ca125 seems to be a guide only to the possibility of a recurrence of Ca, as it is also responsive to other conditions (eg inflammation).
    I'm not sure why mine is on the rise again?...I'm feeling really quite good at the moment...so doing the wait and see, and pet/ct in 2 weeks time if still rising.
    I hope your marker settles quickly, such a worry isn't it....they say to not take too much notice of the marker, but it is sooooo hard not too!
    Please keep posting and let us know how you get on. I live in Australia, (I always read, but don't often post)
    Take care and good luck
    thinking of you..Carolyn xx
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #7
    softD said:

    Rising ca125
    Hi Tina,
    My marker is on the rise too :-/
    I had a false reading a while ago after suffering bowel obstructions (which resolved themselves after 2 weeks). My ca125 however remained elevated for some time after, apparently as a result of an inflammatory response to the obstuctions.
    The Ca125 seems to be a guide only to the possibility of a recurrence of Ca, as it is also responsive to other conditions (eg inflammation).
    I'm not sure why mine is on the rise again?...I'm feeling really quite good at the moment...so doing the wait and see, and pet/ct in 2 weeks time if still rising.
    I hope your marker settles quickly, such a worry isn't it....they say to not take too much notice of the marker, but it is sooooo hard not too!
    Please keep posting and let us know how you get on. I live in Australia, (I always read, but don't often post)
    Take care and good luck
    thinking of you..Carolyn xx

    Hi Carolyn
    Thank-you for your words. I've had IBS over the last 4 weeks where my tummy has been bloated and I was suffering with food intolerances. I wonder if that may have affected the numbers? I so so hope so. I feel really well now and my bloating had gone. Well I will have to wait and see for the next test.

    I suppose, because I am symptom free I should be glad that I am being monitored so closely as my doctor said they have a host of other chemo protocols to use with me so if I ever become resistant to one they can switch to another. I don't have any mets anywhere so I must be thankful for that.

    It is hard to carry on living your life with the knowledge of re-accurance in the back of your mind. But we have to live it to the fullest don't we?

    Take care Tina xx
  • MK_4Dani
    MK_4Dani Member Posts: 314
    #8
    Thinking about you Tina!
    I have the same fears and I am constantly telling myself to live in the moment. Do you really think the US is more advanced? Tell your doc to read this board...lots of ideas from us teal warriors. God bless you Tina!
    Mary
  • clamryn
    clamryn Member Posts: 508
    #9
    Tina Brown said:

    I guess we are not so
    I guess we are not so advanced here in the UK as the states. I think the doctor was being very honest with me and very cautious. I just heard the words "go back on chemo" and that really upset me because I know the longer you go in between each one the better. The scan will give a clearer picture. When I finished chemo the CA 125 was 65, then it dipped to 34 & now it is 71. Maybe that is a pattern for me. I'm sure the doctors were just being vigilant & maybe my CA 125 will be stable next time.

    I did question whether I could have the same one again and they said I responded well to it before & was not ill on it. I don't really want to question their decision as they are the experts and my hospital has a fabulous reputation in the UK for cancer. My husband was with me and he is very positive (which is a good sign because he is normally negative about things)

    Thanks for your concerns Tina xxxx

    CA125
    Tina, I am right there with you. I went to the doctor today to get my last treatment of Doxil and I asked what my CA125 was. I was so scared that it had risen. I just hate it that it controls my life. It stayed exactly the same and is in the normal range. But I had worked myself up just waiting for the results. I too will be getting a PET/Scan on Sept 13 and I am really interested in getting that done. My insurance company doesn't like to pay for it but my doctor told me not to worry because he will get them to do it. I am sending you positive thoughts and praying for you. Maybe both of us can get a good night's sleep tonight.

    Hugs Tina,

    Linda
  • South Jersey
    South Jersey Member Posts: 89
    #10
    Tina,
    I know the CA125 can
    Tina,

    I know the CA125 can make us crazy... I am beside myself whenever I have one done and have to wait for the results. Hopefully, the rise has nothing to do with a recurrence. Let us know when you have your CT and get the results.
    Sending good thoughts and prayers your way!
  • msfanciful
    msfanciful Member Posts: 559
    #11
    Hi Tina,
    For one who has had
    Hi Tina,

    For one who has had at least 3 recurrences since 2007, I know the pang of fear
    that courses through ones body when the word "recurrence" is said.

    Don't get too anxious because for me being stage IV I had carbo/taxol (8 rounds) the first line of treatment.
    #2. Doxil, carbo and avastin for 6months for the 1st recurrence.
    #3. Etopocide for the 2nd recurrence.
    #4. Weekly Taxol for 12weeks for the 3rd recurrence. (For me, this one was easy).

    I finally realized that as long as there are options out there for me, it's just a matter of finding the right treatment for your particular body that could do the trick. So as long as we have these options, we can always have hope too.

    It's what kept me going for almost 4years now.

    Oh yes, regarding your possible decision to go carbo/taxol because you had such a good response, sounds just like the conversation my oncologist and I had; thus the choice of just using the taxol came about and it took my ca-125 number of 63 down to 3 in no time. To date my last lab result reflectd that my number is still 3 almost 3 months later since my last taxol treatment.

    So there are options Tina, and thus hope.


    Sharon
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #12
    msfanciful said:

    Hi Tina,
    For one who has had
    Hi Tina,

    For one who has had at least 3 recurrences since 2007, I know the pang of fear
    that courses through ones body when the word "recurrence" is said.

    Don't get too anxious because for me being stage IV I had carbo/taxol (8 rounds) the first line of treatment.
    #2. Doxil, carbo and avastin for 6months for the 1st recurrence.
    #3. Etopocide for the 2nd recurrence.
    #4. Weekly Taxol for 12weeks for the 3rd recurrence. (For me, this one was easy).

    I finally realized that as long as there are options out there for me, it's just a matter of finding the right treatment for your particular body that could do the trick. So as long as we have these options, we can always have hope too.

    It's what kept me going for almost 4years now.

    Oh yes, regarding your possible decision to go carbo/taxol because you had such a good response, sounds just like the conversation my oncologist and I had; thus the choice of just using the taxol came about and it took my ca-125 number of 63 down to 3 in no time. To date my last lab result reflectd that my number is still 3 almost 3 months later since my last taxol treatment.

    So there are options Tina, and thus hope.


    Sharon

    Thank-you Sharon
    Thank-you Sharon. Wow 3 is a great number, I bet you are so happy. I have come to terms with it now. Everyone on these boards gives me reassurance and hope. Having our cancer is a way of life now and we have to learn to live with the treatment. Adopt it into our daily routines and lives. I just hope I can carry on working if I have to go back on chemo as I am just picking up my old life and getting into a fairly "normal" routine.

    Love Tina xx
  • Disneynutt
    Disneynutt Member Posts: 134 Member
    #13
    msfanciful said:

    Hi Tina,
    For one who has had
    Hi Tina,

    For one who has had at least 3 recurrences since 2007, I know the pang of fear
    that courses through ones body when the word "recurrence" is said.

    Don't get too anxious because for me being stage IV I had carbo/taxol (8 rounds) the first line of treatment.
    #2. Doxil, carbo and avastin for 6months for the 1st recurrence.
    #3. Etopocide for the 2nd recurrence.
    #4. Weekly Taxol for 12weeks for the 3rd recurrence. (For me, this one was easy).

    I finally realized that as long as there are options out there for me, it's just a matter of finding the right treatment for your particular body that could do the trick. So as long as we have these options, we can always have hope too.

    It's what kept me going for almost 4years now.

    Oh yes, regarding your possible decision to go carbo/taxol because you had such a good response, sounds just like the conversation my oncologist and I had; thus the choice of just using the taxol came about and it took my ca-125 number of 63 down to 3 in no time. To date my last lab result reflectd that my number is still 3 almost 3 months later since my last taxol treatment.

    So there are options Tina, and thus hope.


    Sharon

    That is so cool, Sharon. Good for
    That is so cool. Good for you.

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