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

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

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. 

 

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

I will be thinking of you for your PET...Laura!!!

Going tomorrow Wed for the results of the CT Scan, and another CA 125 that was drawn on Feb 1.   I know God is going to take care of me.  Overall feeling good about everyting.  Having you ladies here really helps..hugging each and every one of you. 

Will let you know tomorrow what the doctor says....

susangr
Posts: 63
Joined: Oct 2010

Hope we can meet in person since our appointments are almost back to back!  Since positive thoughts your way.  Susan

mobmob
Posts: 10
Joined: Jun 2012

The whole CA 125 issue is very aggravating. My OBGyn Oncologist wrote (in an email) "We can talk more about the CA125's at your appointment. I just think in your case they may be falsely reassuring."
my CA 125 has remained low since I finished chemo over a year and a half ago, yet I am cautioned against taking any comfort from that.
VERY annoying. My cancer was stage 4 (brain mets) when it was found, so I am in a high risk category.
I guess I'm just saying the CA 125 seems to be utterly useless.

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

I agree that the CA 125 is misleading.  From what I have read there are many reasons for it to be higher and it does not indicate an absence of disease of it is low.  Frustrating.

I feel wonderful and have no symptoms.  The doctor told me after my treatments were over 3 years ago that  that now we wait and see.  That is the hard part.  Have to push it to the back of my mind and enjoy each day as it comes. 

Thanks for your response and here is hoping that you are doing well.  Always praying for the ladies here ...Prayer does wonders for my sense of well-being.  Don't know what I would do without it.

debrajo's picture
debrajo
Posts: 796
Joined: Sep 2011

Prayers, prayers, and more prayers for you and Susan!  I am here anytime you need me or just to talk and if you lose my number, it is in the phone book under Marvin Phiillips in Vidor.  God is good!  Best, Debrajo

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Good luck tomorrow and visual the doc telling you NOTHING BUT GREAT NEWS!!!!!  

Be thinking and praying for you, too~

Jan

 

P.S.  CA125 can be very misleading as in my case it was up a bit, and had something on lung, but doc not concerned as nothing suspicious.  Boy oh boy, can this stuff get us off our normal path and feelings of frustration.  I really try to keep the chin up and think positive thoughts!.....mind over matter~Kiss

txtrisha55's picture
txtrisha55
Posts: 432
Joined: Apr 2011

May all the results come back with a positive outline or negative results? Which ever.  Let it be postive news.  My CA125 has never been a marker for me as it was 15 before surgery and now stays around 11-12.  While you where have your CTscan, I was getting my power port removed.  I was not expecting the removal to be in just a dr office and by a young PA who looked like he could have been Dr Doogie Howser or Richard Cunningham from Happy Days.  Very Young.  The port was sticked in very tight with multiple stiches so he had to search for them to snip the strings.  Oh how it hurt, but it is out now.    I will be praying for good results for you. trish

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

Doogie Howser...too funny. 
Glad you got your port out....will let you guys know as soon as I know something. 

laura25's picture
laura25
Posts: 160
Joined: Mar 2011

I will be praying and sending you my positive thoughts for tomorrow.  I hope you get a restful night of sleep and tomorrow will bring you all good news.

xoxo

NorahS
Posts: 93
Joined: Dec 2012

...and here is one of my favorite quotes for you to think on: 

"Everything is either an opportunity to grow or an obstacle to keep you from growing. You get to choose." 

 

On CA125: I was told that the CA125 number (if it is a marker for you) is just 'one piece of the pie' or an 'indicator'. My interpretation of this (and I stress this is my interpretation) is that something else (physical exam, CT or PET scan, etc.) is required to confirm the presence or absence of disease.

 

And finally, thanks for the "Doogie Howser" giggle Laughing 

 

 

debrajo's picture
debrajo
Posts: 796
Joined: Sep 2011

May you have a good night, a better tomorrow, and the brightest of many years to come!  To God be the Glory!  Best, debrajo

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

My laptop at home bit the dust.  I can read the discussions on my phone but when I go to respond it does not work.  Sorry it took so long for me to give you ladies the good news.  NED NED NEEEEEEDDDDD!!! CA 125 went down to 51 from 62.  Still a little higher than it has been at 41 for the past year....but down.  The nurse and Dr Levenbach did say that there are other influences on this number beside cancer.  Inflammation....as well as other things.  I did increas my dosage of turmeric.  Don't know if it helped but who knows?

Going for a chest CT tomorrow.  I know they should have done it when I went the other day!!! but I think because of insurance they don't order them unless something needs to be checked out.  Chest X_Ray showed nodules...it usually does.  I smoked like a chimney for years plus have had pneumonia.  Quit smoking 4 years ago...glad I did.  Past sins still haunt my x-rays.  Hoping for the best....I think I am fine.  I sing in the choir and can still hold a note for 3 bars of music.  Feel great.  Going to enjoy my visit back to MD Anderson tomorrow.  Always meet someone who inspires me.  There are amazing people there who make every day a miracle.

Love you ladies....and again THANK YOU!!  THANK YOU!!! You made this waiting and worrying so much more bearable with your warm messages and prayers.Kiss

NorahS
Posts: 93
Joined: Dec 2012

May your dance with NED last for years and years! 

 

SUNGRANNY
Posts: 81
Joined: Dec 2012

Congratulations Norma on positive and reassuring results.  Here's to many years of NED.

Sungranny

pinky104
Posts: 108
Joined: Feb 2013

Norma,

I've been losing a little weight each time I go for my check-ups .  Almost every time I lose weight, my CA 125 goes down.  When I had my stage IV cancer in 2010, my high was 94.  The last time I was checked, in Dec.,2012, I was at 8.  Once, it went up a point, and that scared me.  But the next time, it had gone down again. 

I read somewhere once that the test isn't always accurate, so you shouldn't go by that alone.  In some people, it's accurate, and in others, it isn't.  I have another condition (hemochromatosis--a disorder of iron storage) that I get checked for, and any kind of inflammation in the body can mess up the test results on that.  Once, it went sky high when I had a cold.  Another time, I'd had incisional hernia surgery, and it doubled.  We're not doctors, so maybe there is something that we don't know that can affect the CA 125 the same way.  I wonder if any physicians read the stories on this site and might put in their two cents.

I know losing weight puts you at less risk for cancer (I was 179 when diagnosed and am 20 lbs. lighter now).  I bought a book called Foods That Cause You to Lose Weight   The Negative Calorie Effect.  I thought it would tell you what foods (like peanuts) make you burn more weight than you put on from the food.  Instead, it recommended eating as low fat as possible, preferably eating vegetarian, cutting out foods like hamburger, which is always fatty.  A meal might include rice and beans instead of meat. I screw up with it once in awhile with snacks, but generally, I've been doing well on it.  I did hear on the news recently that there is arsenic in rice so you shouldn't have it more than twice a week.  But you can substitute pasta with low-fat sauce or potatoes without butter or sour cream, etc. 

Try getting the weight back off and see if your result goes down.  I wish you good luck.  It's certainly scary and you can't help but worry. 

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