Hi everyone. I’ve completed 3 out of 6 chemo cycles and my CA125 continues to trend downward but my CT scan is unchanged. How is that possible? I was so certain I’d see at least SOME tumor shrinkage so I’m feeling very disappointed and concerned…has anyone gone through this?
Quick background:
Dx: uterine adenocarcinoma stage 4b with Mets to omentum and peritoneum
CA125 3/25: 3476 5/23: 378
BRCA 1 mutation on genetic testing
Treatment: carbo-taxel /dostarlimab
Not the news you were hoping for but as I read your post I am encouraged that your tumors have NOT grown, which is possible. I don't know how long 3 cycles take. You are receiving chemo and immunotherapy. I did read about dostarlimab. Can you ask your doctor about expected shrinkage? You seem to have had all the genetic testing done which is helpful. Did you find Takingcontrol information helpful? Are you doing that too?
While the carbo/taxol is a realitively 'short' (six - once every three weeks) treatment, it looks like the dostarlimab can continue for (at least) up to two years, and the intent of the immuneotherapy will 'boost' your immune system. Have you asked your doctor if this what they have seen or read from the studies for a response?
Hugs dear
Here is a link to an April 2024 article from MD Anderson Cancer Center that you might find somewhat interesting. 
While only discussing chemotherapy, not a chemo-immunotherapy combined treatment like you are on, the article contains a section, "Scans don’t always tell the whole story about tumor growth."
Wishing you the best as you continue your treatment!
Hi Jill -
I hope you are managing chemo ok. Have you had a chance to discuss scan results with your doctor yet? I am on T/C/ Keytruda and while 3 month scan showed improvement in tumor sizes the next one was read as stable. My doctor (he looks at scans himself) did not agree with the radiologist report and said I had continued to make progress. I have also noticed differences in different radiologists reading scans- some are more detailed while this particular one just said “stable.” I was ok with stable as long as there were no increases noted but relieved when my doctor showed the before/after images on a split screen so I could see the progress. I hope your doctor is also able to relieve your anxiety.
CA125 stands for Cancer Antigen 125. It is a protein found in your blood that is a tumor marker to help diagnose or monitor ovarian cancer, but is used in uterine/endometrial cancer as well. Not always reliable for our cancer, it is just a tool in the toolkit.
Everyone probably has tumor markers floating in their body, so it doesn't always mean anything, again, it is just a tool. On the CA125, anywhere between 0-35 is normal. Ovarian cancer also uses HE4, human epididymis protein 4.
There is no one test that they use for uterine/endometrial, but it has been helpful for some of us as a monitor.
thank you to everyone that responded. I apologize for not responding myself but sometimes I get very overwhelmed. I’ve now had 6 rounds of treatment and will be heading to surgery on Tuesday for possible debulking. My CA125 continued to drop to 27 but my scan again showed no significant change. My doc doesn’t agree with the scan interpretation so she wants to try surgery. Praying for a positive outcome💜
jill, let us know how it goes when you feel up to it. We understand "overwhelming". It is ok dear.
