Rising CA-125 No Reason Given

Zura

Hello and thank you for reading. My CT and PET show NED but my CA-125 is now 530. It was 81 post surgery in October and started going up in January. I have had constant swelling in both feet since surgery with no diagnoses. (Doctors say they are unsure why.) In January I went on 200mg Niraparib but after severe anemia and a blood transfusion it was dropped to 100mg a two weeks ago. I have a chronic DVT in my left iliac (since January or February) but I am able to walk and ride my tricycle daily. I eat mostly beans and rice or turkey sandwiches and drink Huel with almond milk for extra fiber and nutrition. (And a weekly pizza.) Does anyone see anything here that is a clue to what is going on? What is typically done if the CA-125 keeps going up with clean scans? Thank you for any help you can offer.

hannaha

https://csn.cancer.org/discussion/325110/rising-ca-125-no-reason-given

Hi Zura, my sister is a cancer patient with absolutely the same situation as you have. She gets her treatment in Germany... we have already changed some clinics... seems nothing changes though....She had her diagnose with CA125 at 3300, after surgery this dropped to 365. after 6 cycles of carboplatin+ taxol 66. She wend on with avastin. We didn't even have a month to breath and that CA125 went up again... it is almost 2 years now it contantly grows. In sept 2021 she got covid and the Ca125 went from 1000 to 2000 very quickly. We had a PET scan which showed some active processes in some lymph nodes and peritonium. Though CT was still only showing the lymph nodes got bigger but with no other evidence of disease. We started the second Chemo with platin+caelyx. CA125 never dropped during the 2nd chemo, we got 6 cycles, finished this in april. The TM is now at 4700....:(( the CT scan done end of March showed positive dynamics, no swallowed lymph nodes... just 2 small things in lungs, and those shrinking, and they never took that lungs thing as tumor, said those are not behaving as tumors. So the Scan was clear. The doctors have no explanation for the CA125. They just stay you keep staying in the zone of high risk... as if we ever left that place in this 2.5 years...Now she has started taking Olaparib, only a week now... we still see the Ca125 growing. I don't know if this really needs to be checked as often as we do, as we are already getting crazy. The only case when Ca125 grew not so intensive was a 9 Day period wen she was almost eating nothing... but she then got stomach pains and was not able to continue with this diet. I am not sure if patient like her are allowed to go to these extremes... I believe cutting on meat and sugar may be a good idea and eating more vegetables perhaps.

I came across some post here, saying the CA125 is not always a good indicator and that it is showing how intensive the disease produces the protein. Whatever that means...

I will keep you updated if we get any news. But let me tell you I took her to the best specialist here in Germany.. he was also not helpful... same standard things...

Ireney74

I was told I was in remission in Dec 2021 my CA125 was 4. Now in June it's gone up to 38 scan and MRI show nothing but I am worried about recurrence. I am on a PARP Zejula 200mg a day but my fear and worrie are overwhelmed. Any advice

thatblondegirl

Hi, Ladies

I’m a visitor from the Uterine Board. I wish I had something important to add about what I call “that stupid CA number.” It’s not a good indicator for me, yet my GYN/ONC insists that we monitor it….I refuse to get blood work every month, so I’ve agreed to every 6 weeks. I’m sick & tired of being poked! I think what they look for is “stable” numbers. It going up with nothing on scans is odd….although other things CAN cause it, like inflammation. I have read research articles that say new rounds of chemo and/or treatments should not be done based solely on that number.

Zura, I think that swelling in your feet might be lymphedema from your surgery.? Did you have lymph nodes removed?

I, too, am taking Zejula. My chances of recurrence are pretty slim anyway, but I feel like should try. Originally, I was prescribed 200mg per day, but it was killing me…dangerously low hemoglobin…7.3. I had to have blood infusions twice. And then I said, “No, I'm not doing that anymore! I’m taking 100mg.” My body seems to be OK with it.

Best to all, A

Ireney74

Thank you for your response and helpful info

thatblondegirl

Dear ireny74,

You’re welcome! This board seems o always be very quiet, so I try to help when I can.

Please try not to be overwhelmed and too full of fear. I seem to be pretty good at ignoring the whole fear of recurrence thing, unless it’s time for bloodwork or a visit to the ONC’s office….which I’ve about figured out gives me a form of PTSD. So much emotional and physical pain originated from that office, that the bad memories come flooding back. And that’s why I balk on too much bloodwork…the anxiety it creates waiting for the “that stupid CA number.”

When I had cancer in my Fallopian tube and multiple spots in my pelvis (Stage II), my number was 20. After two surgeries to remove all visible cancer it went to 66! Infuriating! During chemo mostly in the 20’s, but once went to 32. Again, infuriating! Post-chemo it has dropped to the high teens. During chemo my stomach lining was a real problem…not functioning properly & so not moving food along in a timely fashion. It was inflamed….probably the cause of that 32.

From what I know….again, no treatment based solely on that number….getting that CA regularly serves almost no purpose but to cause anxiety. Yes, if it was rising a LOT, there might be need for some investigating. For some it’s a good indicator, others not.

Try not to worry too much until you have to! Which might be never!

There are lots of threads on the Uterine Board discussing the CA125, if you’re interested.

Hugs, A

KickingCancersButt

https://csn.cancer.org/discussion/comment/1696939#Comment_1696939

Dear ladies, I apologize in advance for posting a not so related question, but as Hannaha mentioned her sister also getting treatment in Germany, I just thought maybe she could help.

My mom was diagnosed in January with stage 3C high grade serous ovarian cancer. She has also be getting treatment in Germany. Hannaha, would you mind sharing more about your sister’s post chemo checks? My mom underwent six rounds of chemo, which she’s now completed. She gets Avastin infusion every 3 weeks for 15 cycles. Her CA125 is 22, down from above 1200.

Her gyno-oncologist recommends a general checkup every 3 months. He doesn’t recommend any scans until after the last round of Avastin. Was that also the case for your sister? From the stories of others, it seems PET scans are very routine, and of course we’re quite worried about reoccurrence. She will test her CA125 every 6 weeks.

hannaha

https://csn.cancer.org/discussion/comment/1698182#Comment_1698182

Hi there and sorry for my late response...

Kickingcancerbutt, 22 is a very good result, and as that doing regular CA 125 check can be enough in this period. Some say CA 125 is not a good indicator, but still vor ovarian, it is... We just got our last CT results and those are not the best ones... so we get now that, it was somewhere in her body, not visible and then it comes up very suddenly... My best advice for you for the future, in Germany, the majority of the clinics tend to do 6 cycles of Chemo and during this 6 cycles they look at the Tumor marker only 2 times. Once after the 3rd cycle is done and then in the end. In case of relapse, fingers crossed this will never come to your mom, but if.... and if she goes through a chemo again, keep asking the TM to be checked every month, and if there is no tendency to go down, then the chemo is not working that needs to be changed.... that's my best learning... and I really cannot get how blind sometimes the doctors get. They learn one thing and are absolutely not flexible to other approaches.... For the time being you are good, you do just need to be careful with checking the Tumormarkers regularly. I hope your mom will get better and you will leave very long together .

Best

larcon3922

https://csn.cancer.org/discussion/325110/rising-ca-125-no-reason-given

Hi, how’s your platelets with 100mg? I have to stop zejula due to hemoglobin of 6.5 and platelets of 10. I had 2 bags of RBCs and 2 bags of platelets. I did a cbc after a week of not being on zejula and still my platelets dropped to 32. Doing a lot of green drinks and I just pray that everything will be ok. My insomnia went away after I went cold Turkey with Gabapentin and Zejula. Sleeping better and having a bowel movement regularly now without killing myself with laxatives and Metamucil😳. I imagine I will be doing another cbc this week again probably to see if I can go back to zejula. They’ll probably drop the dose to 100mg. My CA125 was at 9 before zejula, we’ll see what happens. I’m doing everything I can, I’m praying for wisdom for me and my doctors and I trust my God that he will always be at my side to give me strength, courage, and long life. I cannot be consumed by constant worry about this. I learned so much from this ordeal, the biggest is, treasure every moment with your loved ones, make every moment count. Be praying for you❤️