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

norma2 said:

Praying does help!!!

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.

May your dance with NED last for years and years! 

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. 

berkeleygirl said:

I feel very well ... but CA-125 still going up

Dear Claudia and other ladies who responded to the above email thread some years ago.  I searched with the same question and was so happy and relieved to read your posts. My doctor advised that I pay less attention to the CA-125 and focus on how I feel. Your loving responses allow me to do just that. With all my heart I hope you are are well and continuing to thrive. You are beautiful and we, with whom you share, are blessed.

I'm so glad you found us and were comforted by previous posts.  Sounds like you have a very positive attitude and are doing all the right things in checking with your Dr. and researching.  Good you are your own advocate- keep up that great work.  You've just come across a bunch of "sisters" who are happy to share this journey- keep us posted as you can- sharing our stories helps others who are yet to find us. (((HUGS)))