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Colleen Young, Connect Director avatar

Talking Frankly about Living with Advanced Cancer

Cancer | Last Active: 2 days ago | Replies (558)

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Profile picture for rschreib @rschreib

I was diagnosed with gastroesophageal junction cancer adenocarcinoma stage IV with two liver mets in early February 2024. I had no previous symptoms, so this was quite a shock! (I was 57 years old at the time and very healthy.) Based on my initial tumor testing for PD-L1 I was put on Nivo in addition to FOLFOX for eight rounds. Since that time I have been on 5 F-U and Nivo for 36 rounds total. I'm considering going off 5-FU, which has been recommended by my oncologist, but I am nervous about it as one of my liver mets grew back a year ago. (I had SBRT in Sept. 2024, and my scans have been clear since Dec. 2024.) I would love to hear from anyone who is on immunotherapy (not chemotherapy) about your experience. Thank you!

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Replies to "I was diagnosed with gastroesophageal junction cancer adenocarcinoma stage IV with two liver mets in early..."

@rschreib You might want to check out the pancreatic cancer group. Many have taken FOLFOX, some have adenocarcinoma, and they may have experience with drugs that will also address gastroesophageal.
Best wishes to you!

I was also diagnosed in February 2024 with GEJ stage 4 with a lymph node in my neck positive.
Have been on 5 FU and immunotherapy for 28 cycles. Have had clear scans for quite awhile but my doctor has not said anything about getting off the 5 FU. I would be interested in the reason why your doctor is recommending stopping 5FU.

My husband has stage 4 colon cancer, colon is clear now but a couple of spots in his liver ,he had Y90 placed directly into his liver . That shrunk them down but of course they wanted to grow again he is now on Fruquintinid for 21 days and off for 7 , it’s working which is great as we found out he’s actually allergic to chemo
I believe there are several “ targeted therapies “ available for you.
Good luck