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Intrahepatic Cholangio, Stage 1 but with R1 positive margin
Liver Cancer | Last Active: 4 days ago | Replies (5)Comment receiving replies
Stage 1 R0. 2023 diagnosed. Liver resection / partial whipple 2023. While early 2024. Clean margins. Chemo and immunotherapy ( Keytruda). Very sick from chemo after 6-7 sessions. Stopped chemo. Hospitalized with infection ( bacterial and fungal with sepsis). Watch for fevers and disorientation. Good in summer 2024. More infections and sepsis in June 2025. 20 days in hospital and home health ( iV at home). Infection caused a tear in rebuilt bile duct. Bile leaking and abscess on liver crested sepsis a second time in August and 50 day hospital stay for stent placement to close tear and antibiotics 3x per day and anti fungal 1x per day. Rough hospital stay. Infection occurred a second time due to abscess and bile in abdomen but resolved. Now home and feeling better. CT shows no cancer at this time but we know it likes to come back. Join the Cholangiocarcinoma foundation and they will assign a mentor. Dr Borad is the oncologist to see at Mayo. We used him for treatment recommendations to Banner where my wife had most treatment. We will be at Mayo next month.
Don’t mean to scare you with this information but just be watchful and know your resources. Good liver doctor and interventional radiology could be needed also. CT every 90 days to keep Watch. Chemo was rough but recommended, immunotherapy also recommended.
This cancer likes to return and we know to pay close attention for that. Hope you are doing well and wish you luck with treatment and staying clear of the cancer. Sorry for all the detail. Can be scary but we wanted to be aggressive about our treatment and we advocate aggressively for my wife and try and ask good questions of doctors.
Replies to "Stage 1 R0. 2023 diagnosed. Liver resection / partial whipple 2023. While early 2024. Clean margins...."
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@advocate4her I’m so sorry about all the complications. I hope your wife is feeling better. This thing is just so overwhelming and it feels like you’re constantly surprised by something else. And praying you guys continue to get clear scans and recovery is a smoother road from here on out.
What kind of chemo did that have her on? It’s been recommended that we apply to a trial for people who’ve just had surgery and no visible evidence of cancer (R0 and R1– we have a positive perichynmal margin)- it’s a combination of chemo + immunotherapy or chemo + placebo (double blind study). We’re pursuing it because we trust our doctors (MSK- but we also have experience with Mayo and have nothing but great things to say) but I do wonder, with no guarantee that we get the trial drug (if approved for the study), if we are underestimating what adjuvant radiation can do for the positive margin on the surgical bed. Our doctor said there’s not a lot of evidence for or against radiation in these adjuvant positive margin cases, and I certainly see his point that systemic drugs may be the better bet. I just want to do the best due diligence that I can. Each decision is such high stakes.
Our doctor’s choice of chemo is the capacetabine. We’re still waiting on genetic testing. They put your wife on immunotherapy immediately? Our oncologist presented us with 1. Monitoring or 2. Chemo or 3. Clinical Trial— the cliff’s notes version of the convo and with the caveat that he is going to talk to our surgeon too. Our surgeon is also enthusiastic about the trial but also quickly mentioned radiation seems like it may be somewhat effective for positive margins- so there seems to be a very slight difference of opinion there.