CA 125

[Aelgersma]

I have only posted once but read this forum all the time. In Nov my .CA 125 was 3, 446. After 5 months of IV chemo and 3 months of oral chemo and injections, last month it was down to 76. Now it's back up some. Of course I am freaking out. First, is there anyone that had a number so high? I read where someone was maybe at 500 and so many were able to reach single digit numbers. Feeling alone and nervous .. I see my doctor on monday

[Aelgersma]

I don't know how to edit my post. I meant to say CA 27-29 (not 125)

[MaryJ-S in reply to Aelgersma]

I thought you might mean Ca 27.29 as 125 is for Ovarian. My TMs were in the 1000s after I was diagnosed with mets. I suspect if they had taken them when I was first diagnosed they may have been as high as yours. Mine have never been in single digit and the lowest ever (only once with Afinitor and letrozole were they in double digit. But, as I said in my response to you above, it's not the number but rather the pattern.

Best wishes,

Mary

[PJBinMI]

Having a huge drop like that in the first three months is extremely good news! You don't mention how much it rose, but I can tell you that one of the things my onc has told me is that tumor markers are not "precise." Since they are numbers, it's easy for us to think they should be more precise than they are, plus things besides progression can make them rise. "Normal" for the CA-27-29 is usually anything under 40. It's not unusual for them to bobble around some. Mine rose and fell within a range of about 60 points during a several years long period of stability with mets. I've been living with mbc for over 13 years and for me, the CA 27-29 has only been under 40 a few times. Some oncs don't use TMs at all because they aren't accurate for all of us, and they can cause us unnecessary anxiety when they rise. Oncs generally don't make treatment decisions based on TMs alone. My onc considers how I feel first, scans etc second and TMs a very distant third. And when I started treatment, the second opinion bc onc I saw told me that it would take a minimum of 3 months and very possibly longer for us to know if treatment was working. And I can add that the drop from your first to second CA27-29 is a very very good sign that treatment is working. A bit of rise now is likely to mean very little but do talk with your onc about it. I bet you will be relieved!

[Aelgersma in reply to PJBinMI]

Thanks for your note! 5 years ago I was diagnosed and a year later told I would never have breast cancer again as the surgeries and treatments showed everything in my favor. In November they told me I had 2 months to live as mets in bones and liver is full. So I am fighting with everything I have to stay with my daughter

[DonnaEddy in reply to Aelgersma]

I have mets in all in my bones and skeletal bones and in my liver, which my oncologist told me is aggressive. I am on Xeloda and Tykerb. I get a Xjeva shot every month. I am HER2 positive, ER positive. My oncologist told me that, if this treatment does not work, there are at least 20 or so IV chemo treatments that they could try! I get a PET Scan every 3 months. I would get a second opinion ASAP! New treatments and clinical trials are out there. My oncologist is doing a liver biopsy, which will tell her all clinical trials for the paths my cancer is in. I believe it is called "Foundation" testing. Do not give up!!

[Rhwright12]

Hi! My CTC was 3900 to start Breast cancer with Mets to the bones...after 6 rounds of Perjetta it went down to 17...I've been only on Herceptin and Zometa since last November...and numbers have remained stable...I know numbers can fluctuate a bit and was told not to worry if they do...which obviously it's hard not to worry...best wishes and much prayer to u!

[Aelgersma in reply to Rhwright12]

Thanks for your note. You are the first person ive talked to that has had a crazy high count like i did. Unfortunately mine has never come down to normal range but i just keep fighting it. Hoping and praying for more time with my daughter

[Wildcat1]

Hello!! My blood work doesn't show any tumor markers. It's shows blood as perfectly normal except for low counts due to ibrance. My onc also said tumor markers are not something that she goes by.

We rely on the scans every 3 months. I was diagnosed in December with mets to my bones. My scans show stability in some areas and healing of the bone in the rest. So I'll take it for as long as I can.

Good luck!!

[MaryJ-S]

Hi Aelgersma,

First, everyone's numbers mean something different to them as it really is not the number that means so much but rather it's pattern. Yours has been going down which is a good thing. It sounds like they may have plateaued which is what happens when numbers stay around the same but go up and down a little. Just because yours didn't go down into single digit doesn't mean the same as someone else. YOur numbers had a long way to go...they may go down even more but the main thing is if you have a CT or PET scan that it will be NED ( No evidence of disease). So I would suggest that you talk to your doctor about having a scan.

Second, you will never be alone with this group. Someone will always be here for you!

Best wishes on Monday!

Mary

[Aelgersma in reply to MaryJ-S]

Thank you Mary. You just gave me a hug ❤❤

[rlrastetter]

My TMs were in the high 2000's & after 6 rounds of Gemzar/Taxol, both were down into double digits. I have been on Ibrance & letrazole for 7 months now & my numbers are just above "normal" and have stayed that way. I just had a scan 2 weeks ago & was told NEAD (no evidence of active disease)! Hang in there & keep fighting...there are so many new drugs on the market & in the pipeline.

[Aelgersma in reply to rlrastetter]

❤

[Kats3]

Hi Aelgersma,

My 15-3 tumor markers were super high when I was on Faslodex. The number was something like 4,500. After 3 months I was taken off of it.

The Aromatse Inhibitors did not work well for me and I was put on the oral chemo pill Xeloda. That helped me a lot and the side effects were minimal. I was on Xeloda for two years and just recently got switched to Affinitor and Aromasin.

I'll find out my tumor markers at the end of August when I see the Oncologist at my monthly appointment. My last scans showed bone- only mets but plenty of them. I've never had markers in the normal range and would just love it if I did!!

So, yes, markers can be really high or really low. They're just an extra tool for your Oncologist to use to monitor the trend of your BC on whatever particular treatment you're on.

I know many women get scans every 3 months for years. That scares me. All that radiation is not good.

My Oncologist spaces mine at longer intervals. I guess it's whatever your doctor decides is best.

Good luck in this journey Aelgersma! We all need to try to stay as calm as we can going through all that has to be gone through! Peace. Kats2

[Aelgersma]

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