Pet Scan results: I was diagnosed with... - My Ovacome

My Ovacome

18,142 members20,292 posts

Pet Scan results

Saintgermain profile image
2 Replies

I was diagnosed with endometroid 3B & synchronous 1A endometrial in 2021 ER+ negative for genetic for genetic mutations My CA125 rose in 8/2023, pet showed lymph node in left supraclavicular clavicle and spot in vaginal cuff which ended up being scar tissue had biopsy same sub type my CA125 rose from a stable 15 to 500 I had 6 carbo/taxol/Keytruda & letrozole which didn't work now platinum resistant I'm not PDL1. I finished January 2024 post pet was clear, 3 months later my CA125 started rising again pet showed supraclavicular although small recurred I currently have had 3 Avastin/Doxil crossing my fingers so far so good CA125 hasn't decreased rapidly but its stable not escalating I had my 3-month pet showed the supraclavicular but smaller downgraded to mild, but I had 5 tiny nodes light up in my pelvis similar to clear cell my type doesn't have a lot of options my onc's nurse said the pet doesn't show the entire picture also have to look at the CA125 which right now is 200 went down 2 points at one point in this journey it was 915. I see my onc on Friday plan I am negative for FRA so Elahere isn't an option

My Husband is going thru treatment for esophageal cancer at the same time, no children or family both mid-life babies. Sorry for the long post I've always been upbeat during this journey but feel very defeated, scared didn't sleep last night as the "hamster wheel" in my head kept spinning thanks for listening

Written by
Saintgermain profile image
Saintgermain
To view profiles and participate in discussions please or .
Read more about...
2 Replies
Doggies221 profile image
Doggies221

so sorry to hear what you’re going through. Is the recurrence the ovarian endometrioid or the the endometrial or they can’t tell? What about dostarlimab (jemperli)? Seems like trials would be good to explore, preferably at well known cancer centers like Dana Farber, Sloan or MD Anderson in the U.S. or Royal Marsden in the UK. Best of luck and hang in there🍀

Saintgermain profile image
Saintgermain in reply to Doggies221

I believe it's the endometroid see my doctor on Friday as she may opt for a biopsy of the pelvic node. I will look into the jemperli (not heard of it) I'm in Chicago actually flew to MD Anderson for a consult with Dr. G the low grade specialist at this point I wouldn't qualify for a trial as I have two different types. Thanks a bunch

Not what you're looking for?

You may also like...

CA125 rise but clear PET/CT scan

Hi everyone, I have been going through this OC journey with my partner for the past year. She was...

Perplexed about PET scan results

Hello Ladies. I finally got some results from my four days of test after test. It all started when...

Scan results .....

Well today was the day of latest ca125 test and scan results. I finished my treatment last...

CA125 Post operation have increased and treatment options

Hi all My wife was diagnosed with Stage 3 ovarian cancer back in September 2020. Due to the extent...

CA125 rising but PET scan clear

Hello friends, I am post surgery 14 months, post chemo over six months. On a clinical trial getting...