CA125 went up all else is good, should I be worried?

norma2
norma2 Member Posts: 479

I went to the MD Anderson today for my 3 year checkup.  Pelvic exam and everything was good.  They poked and prodded me for a while.  Dr. Levenbach said see you in 6 months.  Well just got the results of the CA125 and it went up to 61.  Now mine has been running a steady 41 for a year and a half.  So I am freaking out.  I feel great.  Have gained a little weight but am otherwise doing fine. 
A year and a half ago it went from 20's post treatment to 41 and then remained steady til now.  I know some of you gals monitor this marker and just was wondering what you thought.  The nurse said she would call me back if Dr. Levenbach wanted to see me.  She said watch for any symptoms such as vaginal bleeding.  Last time it went up I couldn't sleep and worried myself sick.  And that was a year and half ago, I am still here. 

Thoughts ladies?  I feel like a big whiney baby since all else went really well and I feel so good. 

 

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Comments

  • norma2
    norma2 Member Posts: 479
    ConnieSW said:

    I don't know

    But I don't think you're whiny.  After what we've been through, it doesn't take much to rock our boats.  

    Thanks !!!

    I will have to digest this new turn of events.  I had been lulled into a sense of security after 3 years.  I appreciate your support, Connie.  Thanks for the comment, friend.

  • california_artist
    california_artist Member Posts: 816 Member
    Hello, Norma, my dear friend,

    I was just thinking of you earlier today, wondering how you were doing. So, in response to your question on thoughts, here are a few of mine.

    I have held that is nearly impossible to get rid of every single cancer cell, no matter how you try to defeat them. With this in mind, I do try to thwart them so their numbers remain low enough to NOT require a new blood supply. That getting their own source of food and nourishment is what whacks us over the head. So, might I suggest that you act as though you got your diagnosis or are activelly in the process of keeping the number of cells under control and to that end use all those things we talked of long ago:

    Deep breathing for a few minutes, several times a day to defeat an anerobic cellular environment. and to provide an opportunity for your body to man your immune system. As long as you are stressed out and your body fells threatened, most activities are directed at arming a defense against an outside invader and your immune system takes a break from killing cancer.

    Green tea, steeped for 30 minutes, then lemon added and consumed within the hour

    Turmeric at the same time as black pepper and olive oil, as that seems to work on even pancreatic cancer per a woman doctor at M.D. Anderson's study

    Ginger, raw, about a 1/4 in slice nibbled on at some point during the day-some studies suggest ginger is as effective as chemo in fightin ovarian cancer-University of Michigan.

    Exercise-

    Happiness

    concentrate the diet on alkaline, no or few meats  -no artificial sweeteners, alcohol, --look up a chart on the web

    Norma, we go way back. just mount a defense, regardless of other things, I would not just accept that things are well. Think of what your life was like in the year or two before your original diagnosis and try to avoid any of those things that might have crept back into your daily activities.

    Warmest hugs ever,

    Claudia

    I am recovering from some sort of bronchial thing and the lack of oxygen to the brain may make this a less than stellar response.

  • Ro10
    Ro10 Member Posts: 1,561
    Norma glad the physical exam went well

    My doctor has always said the CA 125 is just a number.  He does not get concerned unless there are symptoms, which I have never had any symptoms at all, or there are changes in the CAT scan.   Maybe you could have the CA 125 rechecked in 3 months instead of 6 months to put your mind at ease.  Continue to enjoy each day.  In peace and caring.

  • norma2
    norma2 Member Posts: 479

    Hello, Norma, my dear friend,

    I was just thinking of you earlier today, wondering how you were doing. So, in response to your question on thoughts, here are a few of mine.

    I have held that is nearly impossible to get rid of every single cancer cell, no matter how you try to defeat them. With this in mind, I do try to thwart them so their numbers remain low enough to NOT require a new blood supply. That getting their own source of food and nourishment is what whacks us over the head. So, might I suggest that you act as though you got your diagnosis or are activelly in the process of keeping the number of cells under control and to that end use all those things we talked of long ago:

    Deep breathing for a few minutes, several times a day to defeat an anerobic cellular environment. and to provide an opportunity for your body to man your immune system. As long as you are stressed out and your body fells threatened, most activities are directed at arming a defense against an outside invader and your immune system takes a break from killing cancer.

    Green tea, steeped for 30 minutes, then lemon added and consumed within the hour

    Turmeric at the same time as black pepper and olive oil, as that seems to work on even pancreatic cancer per a woman doctor at M.D. Anderson's study

    Ginger, raw, about a 1/4 in slice nibbled on at some point during the day-some studies suggest ginger is as effective as chemo in fightin ovarian cancer-University of Michigan.

    Exercise-

    Happiness

    concentrate the diet on alkaline, no or few meats  -no artificial sweeteners, alcohol, --look up a chart on the web

    Norma, we go way back. just mount a defense, regardless of other things, I would not just accept that things are well. Think of what your life was like in the year or two before your original diagnosis and try to avoid any of those things that might have crept back into your daily activities.

    Warmest hugs ever,

    Claudia

    I am recovering from some sort of bronchial thing and the lack of oxygen to the brain may make this a less than stellar response.

    Thank you dear Claudia

    So very glad you reminded me of these things.  I will take them to heart.  I have had some major sinus issues in the past few months.  Hope your bronchial thing gets better. 

    Warm hugs and lots of them right back to you....

  • norma2
    norma2 Member Posts: 479
    Ro10 said:

    Norma glad the physical exam went well

    My doctor has always said the CA 125 is just a number.  He does not get concerned unless there are symptoms, which I have never had any symptoms at all, or there are changes in the CAT scan.   Maybe you could have the CA 125 rechecked in 3 months instead of 6 months to put your mind at ease.  Continue to enjoy each day.  In peace and caring.

    {{RO}}}

    I think that is a good idea to go back in 3 months instead of 6.  The nurse did not seem that concerned about the slight rise as all else checks out fine.  I hope you are doing ok.  Been reading your posts and thinking of you.

    You have made me feel better.  Thanks so much!!!

  • norma2
    norma2 Member Posts: 479
    Ro10 said:

    Norma glad the physical exam went well

    My doctor has always said the CA 125 is just a number.  He does not get concerned unless there are symptoms, which I have never had any symptoms at all, or there are changes in the CAT scan.   Maybe you could have the CA 125 rechecked in 3 months instead of 6 months to put your mind at ease.  Continue to enjoy each day.  In peace and caring.

    {{RO}}}

    I think that is a good idea to go back in 3 months instead of 6.  The nurse did not seem that concerned about the slight rise as all else checks out fine.  I hope you are doing ok.  Been reading your posts and thinking of you.

    You have made me feel better.  Thanks so much!!!

  • debrajo
    debrajo Member Posts: 1,095
    norma2 said:

    {{RO}}}

    I think that is a good idea to go back in 3 months instead of 6.  The nurse did not seem that concerned about the slight rise as all else checks out fine.  I hope you are doing ok.  Been reading your posts and thinking of you.

    You have made me feel better.  Thanks so much!!!

    Maybe I'm a big whiny baby,

    Maybe I'm a big whiny baby, too, but that would scare me to death.  I guess if the ca125 is a marker for you, I'd worry, if not and Dr. seems ok I would maybe be able to get my heart started again.  For me, the ca125 is the ONLY test they do, no scans, MRI, Cat/Pet, so I Live by that darn number.  I agree with Claudia, it's defensive mode time, and instead of three month recheck, how about one month or six weeks?  I couldn't stand the whole three month wait.  Don't want to be the downer here, but don't want this monster to sneak up on you.  Your NED time gives me hope.  Remember, I'm right over here in Vidor, 20 minutes away, if you need ANYTHING.  My home phone is 4097862819.  Best to you, Debrajo

  • norma2
    norma2 Member Posts: 479
    debrajo said:

    Maybe I'm a big whiny baby,

    Maybe I'm a big whiny baby, too, but that would scare me to death.  I guess if the ca125 is a marker for you, I'd worry, if not and Dr. seems ok I would maybe be able to get my heart started again.  For me, the ca125 is the ONLY test they do, no scans, MRI, Cat/Pet, so I Live by that darn number.  I agree with Claudia, it's defensive mode time, and instead of three month recheck, how about one month or six weeks?  I couldn't stand the whole three month wait.  Don't want to be the downer here, but don't want this monster to sneak up on you.  Your NED time gives me hope.  Remember, I'm right over here in Vidor, 20 minutes away, if you need ANYTHING.  My home phone is 4097862819.  Best to you, Debrajo

    {{Debrajo}}

    I am going to try and go into the offense mode like you said.  Have gained some weight and eaten whatever I want, especially through the holidays.  Back on the no sugar and healthy food regimen.  Exercise and deep breathing....etc.  So very much appreciate your support!!! Hug around the neck....

  • txtrisha55
    txtrisha55 Member Posts: 693
    Do not freak out and you are not whinny!

    Congratulations on the good report that everything looked good.  The number is just that a number it could be anything.  My dr told me that if anything was going on in the abdomin (not related to cancer) was going on the number could be elevated.  If everything else is clear I do not think I would be worried about it but would go back in 3 months instead of 6.  No use worry for 6 months.  Yes the holidays people tend to go off the normal eating and then in the new year start the normal eating again.  Praying for you. trish

  • HellieC
    HellieC Member Posts: 524
    norma2 said:

    {{Debrajo}}

    I am going to try and go into the offense mode like you said.  Have gained some weight and eaten whatever I want, especially through the holidays.  Back on the no sugar and healthy food regimen.  Exercise and deep breathing....etc.  So very much appreciate your support!!! Hug around the neck....

    I think we all worry about any change

    I think we all worry about any change, no matter how small - it's not whiney - it's human nature! 

    I think that the CA125 can go up due to inflammation or infection, so it is possible to see a change that is not cancer related.  The suggestion to ask for a re-check in 3 months, rather than 6 months sounds a good one.  In the meantime, I think the diet advice etc is probably the way to go.  But, above all else, keep reminding yourself that you feel well!

    Kindest wishes
    Helen

  • norma2
    norma2 Member Posts: 479

    Do not freak out and you are not whinny!

    Congratulations on the good report that everything looked good.  The number is just that a number it could be anything.  My dr told me that if anything was going on in the abdomin (not related to cancer) was going on the number could be elevated.  If everything else is clear I do not think I would be worried about it but would go back in 3 months instead of 6.  No use worry for 6 months.  Yes the holidays people tend to go off the normal eating and then in the new year start the normal eating again.  Praying for you. trish

    Thanks Trisha

    Good advice.  I can at least get another CA 125 in 3 months.  I really do feel fine.  I am a worrier.  My husband chides me all the time because I worry.  The prayers are very much appreciated....thanks dear Trish.

  • norma2
    norma2 Member Posts: 479
    HellieC said:

    I think we all worry about any change

    I think we all worry about any change, no matter how small - it's not whiney - it's human nature! 

    I think that the CA125 can go up due to inflammation or infection, so it is possible to see a change that is not cancer related.  The suggestion to ask for a re-check in 3 months, rather than 6 months sounds a good one.  In the meantime, I think the diet advice etc is probably the way to go.  But, above all else, keep reminding yourself that you feel well!

    Kindest wishes
    Helen

    Hellie!!!

    I do feel fine.  Great actually.  I had to laugh about the worry about change.  I do.  We have a business and every day there is some kind of change to which I have had to adjust.  That is the not the nature of life, though, is it? 

    Seems like the ladies have all suggested a recheck in 3 months.  I think that is a good plan.  Won't hurt and will ease my mind a bit. 

    YOU guys are the best.   Thank you so very much for the support. 

  • NorahS
    NorahS Member Posts: 92
    norma2 said:

    Thanks Trisha

    Good advice.  I can at least get another CA 125 in 3 months.  I really do feel fine.  I am a worrier.  My husband chides me all the time because I worry.  The prayers are very much appreciated....thanks dear Trish.

    A possible suggestion for you...

    ...is to think about it not as a 'worry' but as 'waiting'.

    Recently, I have come to the realization that developing the art of waiting is - and will continue to be - huge in my recovery.

    So my suggestion is that you focus on your decision to wait only 3 months for a new CA125 test  <-this is a positive thought for your positive action.

    All the best to you.  

     

      

     

     

  • ConnieSW
    ConnieSW Member Posts: 1,604 Member
    NorahS said:

    A possible suggestion for you...

    ...is to think about it not as a 'worry' but as 'waiting'.

    Recently, I have come to the realization that developing the art of waiting is - and will continue to be - huge in my recovery.

    So my suggestion is that you focus on your decision to wait only 3 months for a new CA125 test  <-this is a positive thought for your positive action.

    All the best to you.  

     

      

     

     

    Great advice

    Thanks, Norah

  • jazzy1
    jazzy1 Member Posts: 1,379
    ConnieSW said:

    Great advice

    Thanks, Norah

    Waiting~

     

    WAIT IS A 4 LETTER WORD!!!!!

  • norma2
    norma2 Member Posts: 479
    NorahS said:

    A possible suggestion for you...

    ...is to think about it not as a 'worry' but as 'waiting'.

    Recently, I have come to the realization that developing the art of waiting is - and will continue to be - huge in my recovery.

    So my suggestion is that you focus on your decision to wait only 3 months for a new CA125 test  <-this is a positive thought for your positive action.

    All the best to you.  

     

      

     

     

    Norah

    Your kind words helped a lot.  I am not good at waiting for anything.  As old as I am you would think I would be able to wait.  Focus on the positive.  And there is a lot of positive to focus on.  I am 3 yrs past treatment with no detectable cancer.  That is good and I am going to dwell on that.  My doctor is one of the top doctors in the country and I am blessed to go to MD Anderson in Houston.  I have to put my trust in that.  Dr. Levenbach is not usually one to be overly optomistic.  In the beginning he was a downer.  This last visit (prior to the results of the CA 125) he was very optomistic.  Said I was doing great.  I am going to just let that make me at ease. 

    The comments from all the ladies here have made me feel so much better.  Makes this journey so much easier to have you.  Pray for you guys everyday.

  • norma2
    norma2 Member Posts: 479
    jazzy1 said:

    Waiting~

     

    WAIT IS A 4 LETTER WORD!!!!!

    {{{JAZZY}}}}}

    So true!!!!  Smile

  • norma2
    norma2 Member Posts: 479
    jazzy1 said:

    Waiting~

     

    WAIT IS A 4 LETTER WORD!!!!!

    Looks like I won't have to wait....

    Dr Levenbach's office called me yesterday to schedule a CT Scan, X-rays, and bloodwork for Friday Feb 1.  He saw the CA 125 and scheduled the tests.  I am afraid but also comforted by the fact I have one of the top doctors in the country at one of the best hospitals in the world.  Going to put on my big girl panties and quit whining.  I will pray this is a false alarm and hope the rise is just a fluke. 

    Everything in my life is going so well right now.  I had put the cancer way back in my mind.  Now it is here again rearing it's head.  You gals who are battling it are so very brave.  I am always uplifted by the posts of those who keep up their courage.  You are my heros.  I am going to fight this thing.  I have way too much to live for right now.

    I have had 3 wonderful years of NED.  For which I consider myself extremely lucky by God's grace.  I feel great.  No symptoms.  Just a 20 poing rise in the CA 125 from 40 which it has been for over a year to 62 points. 

    Will have to wait.  Like you said Jazzy WAIT is a four lettered word.  hahaha....wait and pray.  PRAY is also a four lettered word.  Going to do a lot of that....praying for all of you too....

  • jazzy1
    jazzy1 Member Posts: 1,379
    norma2 said:

    Norah

    Your kind words helped a lot.  I am not good at waiting for anything.  As old as I am you would think I would be able to wait.  Focus on the positive.  And there is a lot of positive to focus on.  I am 3 yrs past treatment with no detectable cancer.  That is good and I am going to dwell on that.  My doctor is one of the top doctors in the country and I am blessed to go to MD Anderson in Houston.  I have to put my trust in that.  Dr. Levenbach is not usually one to be overly optomistic.  In the beginning he was a downer.  This last visit (prior to the results of the CA 125) he was very optomistic.  Said I was doing great.  I am going to just let that make me at ease. 

    The comments from all the ladies here have made me feel so much better.  Makes this journey so much easier to have you.  Pray for you guys everyday.

    Norma

    Sorry but not kept up on this topic, and finally got to review some recent postings.  

    Glad your doc is well renowned and you feel comfortable and have trust...that's truly 1/2 of the battle with this disease!!!  What just came to  my mind, can your doc follow the CA125 marker????  Now I know all of us like to follow it and wondering if he cannot, meaning the movement doesn't show a darn thing with new cancer...means nothing!!!  My CA125 is "very" reliable according to my doc, and can't follow with everyone.  Believe you me, I've had many on-going conversations with my doc about this as I always second guess him, but he has been right on the mark.  

    Prior to chemo my CA125 was well over 500 and after EACH treatment it consistently came down and found a normal of 5.  My last appt last week, as reviewed a CT and my CA125, it had gone up to 11, but I've been fighting a bad cold and upper congestion in my head and chest.  As to why I had the "non-cancerous" spot on the lung...so he was just fine with this showing.  Any type of inflammation does affect the movement of this marker, too.  .

    Wanted to bring this up as many of us rely so much on the CA125 when in fact, it's not really showing anything new.  So...I'm hoping and praying this is right on the money with you, as remember you feel great!!!!!  Hopefully you can keep this in the back of your mind and think and visualize HOPE!!!

    Norma, we're all here for you and I just love the picture on your profile!!!!

     

    Best to you and keep that beautiful smile.....

    Jan

  • debrajo
    debrajo Member Posts: 1,095
    norma2 said:

    Norah

    Your kind words helped a lot.  I am not good at waiting for anything.  As old as I am you would think I would be able to wait.  Focus on the positive.  And there is a lot of positive to focus on.  I am 3 yrs past treatment with no detectable cancer.  That is good and I am going to dwell on that.  My doctor is one of the top doctors in the country and I am blessed to go to MD Anderson in Houston.  I have to put my trust in that.  Dr. Levenbach is not usually one to be overly optomistic.  In the beginning he was a downer.  This last visit (prior to the results of the CA 125) he was very optomistic.  Said I was doing great.  I am going to just let that make me at ease. 

    The comments from all the ladies here have made me feel so much better.  Makes this journey so much easier to have you.  Pray for you guys everyday.

    I am soooo glad you are going

    I am soooo glad you are going back to get the check ups done!  Waiting is the biggest stresser we have and we just don't need any more.  You know where I am and how to reach me.  If you need transportation AT ANY TIME I am here.  Will be praying that this is the only trip you have to make for the next six months!  Love, Debra