CRAZY WITH CA125

[CHOYOS]

Hi. My name is Catalina, I am Colombian and I feel so lonely in this cancer journey... I don't know anybody with ovarian cancer in my country and there are not support groups either. It is fantastic finding you here!

I just want to know what is "normal" about the results of CA125

I was diagnosed with stage IIIC ovarian cancer last year. I was told the desease had not spread a lot (I was put on IIIC because of two lymph nodes), they found a 4.5cm tumor on my fallopian tube that was growing to the peritoneum, there was not fluid in my abdomen, the washes were clean and I had a complete debulking. I had 6 rounds of carbo/taxol chemo and I am in remission now. My CA 125 prior to surgery was 285, after the surgery dropped to 29, after my first round of chemo dropped to 20, second round to 12, third round to 11. Then it stabilized and it's been more or less the same since then. One month ago, however, was 13 and I got in panic... Next week I have my next blood test and anxiety is getting on my nerves...

Last week I had a CT SCAN and it was clean. Nevertheless, I am scared. What would you recommend me to do in order to "manage" this CA125 test?. My doctors say I only need it every 3 months but I'm getting kind of addicted to the test. I really don't know what to do

Thank you for your support

[acostello]

Your CA125 is supposed to be 35 or less.

[Tesla_7US]

Catalina, you are not alone. This is an entire forum of people; women, their mates and families, who are affected by this disease. I'm in the US. Here the normal range for CA125 is 1-38. In other places it's 0-34. It can be affected by many, many things which are NOT cancer related. Your CA could rise if you have a fever, infection, intestinal flu etc. Your reading is well into the "normal" range. It is not unusual for that number to fluctuate both up and down. What doctors watch for is a trend in either direction. If it trends down and you had a high number at diagnosis, down is good. If it is trending up and you had an elevated number at diagnosis, then your doctor will want to monitor you and perhaps do a scan to see if anything is amiss. My CA number goes both up and down within an 8 point range. Yes, this is quite nerve wracking, but you are fortunate to be well within normal range. Now, if you begin to experience symptoms you should see your doctor. Tesla

[CHOYOS in reply to Tesla_7US]

Thank you very much for your reply. It makes me feel better. I feel not alone

[Sherryross]

Please don't get addicted to the ca-125. It's been over two years for me and I am Advanced stage 4 and I am still alive and enjoying life. My ca-125 has bounced around from 15 up to maybe around 200 in the last year. We just switch drugs and I just keep on going. We could get it down to 15 if they blasted me with tons of chemo but then I wouldn't enjoy life so that's the way it has to be. I I was in remission once for about 3 months and I didn't even feel good. I feel better when I am having chemo which is every 28 days. I have my moments but not too often when I do have a moment I watch Frasier reruns and just crack up or call my friends to motivate me or inspire me and most definitely make me laugh. Hang in there and don't obsess about the numbers if at all possible.

[Hidden in reply to Sherryross]

Sherryross , Your post is so positive and gives so much hope to everyone.

Doom and gloom when visiting hospital for appointments so coming here and reading everyone thoughts, feelings , advice and news is so uplifting.

Catalina I'm sorry you are so anxious. That's how I've been. Was brave and returned to this forum last week and already I feel more positive. Xx

[CHOYOS in reply to Hidden]

Let's be positive. It's my promise. Let me know how it goes

[CHOYOS in reply to Sherryross]

Thank you Sherry!!! Good luck with your treatment. Life goes on

[Nisany in reply to Sherryross]

Dear Sherryross

Which drugs did you mean?

What type is your cancer

Are these drugs not chemo ?

[miyoshi]

I'm repeating myself from prior posts, but I find mindfulness training and meditation very helpful. The only thing you can control are your thoughts.

[Vicart in reply to miyoshi]

I agree Miyoshi. Our thoughts are so important. Science now knows our thoughts affect our cells. Happy thoughts equals happy cells!💕

[drummondfc]

I worry about rising CA125 also, Catalina. Mine went up when I had the flu. Six weeks later, it went down by eight points to 10. This is two points higher than it was in Nov. 2016 but still within the acceptable range.

Things I do with the hope of remaining in remission - three years now from my last recurrence - are healthy eating (mostly plant based) and exercise. If you can afford to consult an integrative cancer specialist for supplements, I'd suggest that.

All the best.

Faith

[eberhips]

To reiterate what others have said, stay positive and don't let the CA125 number bum you out. More important is how you are feeling and the direction the cancer marker is going. I started out at 2900 in November of 2016 and now after 8 rounds of chemo(taxol/carboplatnum) and a complete hysterectomy my number is 31. But I am in no way anxious, just living my life one day at a time.

[mamamac1919 in reply to eberhips]

I was getting worried that my ca125 was way to high..when everyone else was either double or single digits. Originally, my ca125 was 1100 and then after one chemo treatment it went down to 512. I guess after more treatments it will drop even further. I hope so..Does it mean the chemo is working.?

[Sherryross in reply to mamamac1919]

Don't worry about that number mine has bounced around from 35 to 900. When I was diagnosed it was over 3,000. I feel really good. When it goes crazy they just switch drugs. I have stage 4, in palliative care and that's the way it goes. Luckily I feel good no matter what happens. Stay positive. God bless

[looslee]

Hi Catalina I'm also stage 3C High severity mine was in my fluid in my abdomen I have had 12 months of chemo after my debulking also had cancer on my colon. My CA 125 has not been below 87 in 2 years. Normal is below 34. Check out a group called overian caner women on Facebook great group lots of information member have to have ovarian cancer to join.

[Aire]

Catalina, I am so sorry that you are having to go through all of this. I know the anxiety can be unbelievable at times. For some odd reason before any tests that have me very anxious, I find that if I pray and ask that I be given the strength to deal with what I am given helps me a great deal. I know what helps me does not necessarily help others. I have been dealing with this nasty disease for sixteen years and every new incident is a suprise and a test of patience, anxiety, hope any kind of serenity. I think you are so wise to share on this web site to learn all you can and proceed as any of us can. Take care and keep sharing. Hugs 🤗 and prayers to you. 🙏

[carolleigh]

I am so sorry too. I am going through fears about my CA 125, which is now 19 but was usually 5-7 when I have been in remission. But I had an operation recently...hoping that raised it. My doctor seemed pretty sure I have a return of cancer (uterine adenocarcinoma before). I am just worried. Thanks for sharing and to everyone else!

[carolleigh]

Thanks so much for sharing! I hope my feedback is helpful.

I noticed that I get nervous when I am about to get a test. I actually didn't think much about it...just expected it. Mostly I rely on guided meditations to keep myself peaceful. Youtube has the best, I think. I search for "cancer and guided meditation" in YouTube.

I have uterine cancer adenocarcinoma, diagnosed Jan 2016. I think my CA 125 was 40 at it's highest, then had hysterectomy, then chemo. The CA 125 went down to 16 on my first chemo, then went down a few points every time, then settled at around 6. It shot up to 19 or 20 or so after about year. Then I had a new CT scan. It showed activity in some of my lymph nodes. I am still too scared to read my own pathology reports, btw. I think I will sit down with my doc and do it next time.

Anyway, my CA 125 dropped 2 points or so when I wasn't doing any treatment except for the supplements and cannabis (but I wasn't taking my of it at that point)

Then I started Doxil so I get tested every month...and it didn't go down at all the first month, but then it went down to 12. I had 2 chemo injections so far. I wish I could have the CA 125 every month. The protocol of every 3 months doesn't make sense to me. I really think I could have caught it earlier if I was getting tested every month. I am going to ask my doctor.

Maybe this helps-I get stressed when I compare myself to other people. I wind up worrying that I will have all their reactions. I noticed often people post when they have a problem so I might not see the positive enough. I won a raffle book yesterday at a gynecological cancer conference, "The Anatomy of Hope." I need to learn more about mental states and healing.

I hope this helps and thanks so much for posting!