Intrahepatic Cholangio, Stage 1 but with R1 positive margin

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.

@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.

@hlaw241 same chemo as you were recommended. We did chemo pills for a while initially then chemo via IV and immunotherapy at the same time. They don’t believe radiation would provide a wide enough coverage to be effective as it’s very targeted. We also discussed Histotripsy as a possible option if a tumor comes back. We also had a Y90 done for more targeted radiation right into the tumor area ( interventional radiology would do this). A lot of complexity with this cancer and yes important decisions along the way

Was the y-90 an adjuvant treatment after the clean margin surgery or something done before surgery to help get cleaner margins? We were not recommended any treatment before surgery but I’m sure that’s because the surgeon thought he would get clean margins and they didn’t want to risk waiting with this thing, which sounds reasonable to me and there’s always a risk of a microscopic positive margin. And tho I really wish they didn’t, they did find a positive parenchymal margin. Bile duct/ vessel margins are very close but they didn’t find evidence in invasion on the slides. That’s why I’m just curious if putting radiaion off the table for a 50/50 chance at getting a new immunotherapy in trial is the best calculated risk. But I also come into this fully knowing that if our oncologist thought it was riskier to move for trial, he wouldn’t recommend it. But on the flip side, we also had one surgeon recommend we wait and monitor this tumor for three months, which now we know the pathology— it was probably not a great idea to wait. (He was not at MSK but also a very reputable surgeon and I think a good one.) But I just say that because sometimes really good doctors turn out to be wrong because we’re working off imperfect information and scarily often, a moving target.

Did you move from the pill chemo to the IV chemo because the pill was making her too sick? Was she tolerating the IV better?

I really appreciate your taking the time to answer all these questions. Before surgery, our MSK doctors had strong suspicions this would be cancer but we didn’t know without a doubt until the pathology report post surgery as we didn’t have a biopsy before surgery. So we are new to researching cholangiocarcinoma.

IV chemo was worse on her I think due to greater volume of a toxic substance that kills everything indiscriminately and being given over several hours two weeks on and one week off . Lowering hemoglobin, magnesium and potassium and we didn’t know how important sodium was until it dropped to dangerously low levels and sent her right to the ICU on a trip to the ER.

Y90 seemed effective and no tumor indicated post y90 procedure. However the IR doctor did indicate some unusual arterial and venous development in that area 6 months later that may indicate new development of a possible new tumor. None indicated but he wanted us to be aware as he has seen it before. We know to do regular CT scans every three months to watch things. My wife was not bothered much by the radiation from this therapy as it’s fairly localized assuming they can get close to the tumor capillaries feeding it. The beads are inserted and do two things. They block off the blood supply and radiate the area killing the tumor. Closer to the tumor the better. Otherwise may only kill off a portion of the tumor. Best of luck on your journey. Can be frustrating at times and it’s a very complex process often with multiple things happening at once. Caregiving is also a challenge to keep up with it all and be a good advocate for her. Learned more about the bile system and liver than I ever wanted to know. We also have some portal vein constriction that creates swelling ( edema) in ankles legs and feet. This maybe a future stent procedure but not a priority for now. Best to you both.