Diagnosed with cholangiocarcinoma, can this be treated?

Is anyone currently being treated for cholangioncarcinoma. Are you willing to share your therapy experiences and struggles. What are the treatments like and how often and for how long. Who is your oncologist?

Welcome @ntrud68. I moved your question about treatments for cholangiocarcinoma to this existing discussion:

- Diagnosed with cholangiocarcinoma, can this be treated? https://connect.mayoclinic.org/discussion/diagnosed-with-cholangiocarcinoma-can-this-be-treated/

I did this so you can click the link to read previous posts and connect with other members living with cholangiocarcinoma like @wjdemarco @jalewallen74 @gstoreydothan @lvtexas @billdemarco @kjrita @afrancesca @clarke6 @mngardenaddict @jerrydrennan @chicory2010 and more.

@ntrud68, what treatment is being suggested for you? How are you doing?

You can add me to the Cholangiocarcinoma discussions/forums here. I've had it for a year. I live in Houston. I did Chemotherapy for a year; Cisplatin and Gemcitatine. The cancer did'nt spread and shrunk as shown by PET Scans. Cisplatin was hard on my kidneys and stopped. This month my Oncologist started me on the Immunotherapy drug Imfinzi. The side effects are the same but I tolerate them well.

Hi John,

Just curious. I love Mayo in Phoenix. I actually switched over from MD Anderson in Gilbert AZ to join Mayo but I know MD Anderson has a great reviews for Houston. Curious when living in Houston you didnt use MD Anderson.

Kenny

Hello new here
Long story ! So back in Feb I took my mum to a&e after months back and forth to drs with upper right pain under ribs and foods not agreeing with her and the drs dragging their feet with treating her 🥲🤬 anyway her blood tests showed liver enzymes to be almost 700 which made them think something isn't rightlets do a cat scan. She had scan and they said something sinister was on it. She showed in hospital for 4 days until she begged to be discharged. As she wasn't jaundiced they said fine. Whilst in hospital she also had mri and mrcp scan. Discharged and waited for pet scan which she had then also had biopsy done with camera down throat. Also had thorax xray. Had meeting with consultant who told us he suspected a bile duct cancer within the liver that had gone in nearby lymph nodes and was inoperable. Mass is 3cm. And after biopsy comes back can hopefully start on chemo and immunotherapy. Wait for biopsy results to then be told they have come back negative! Was getting our hopes up but dr said no we are 95% sure you do have cancer but we obviously never went deep enough in biopsy so now down for another biopsy which is on Tuesday. This time it will go through the skin and use ultrasound. I have done nothing but research since I have found out and I have came across a thing called inflammatory pseudotumor this condition mimicks bile duct cancer and the masses look identical to cancerous ones and can only be confirmed via biopsy. Now the consultant is only going by all the scans so far so am I mad in having hope?!?
Also may I add that since February this has obviously shocked the life out of us all and gave us some trauma it has knocked us into looking at our health. Since then my mums diet consists of juicing and fresh fruit and veg, hardly any food that contains sugar. Hydrogen fresh water. Vitamin c infusions. Lots of vitamins and supplements. Just good clean food really. And build up milkshakes. She has list weight which is inevitable as she was a size 16ish I would say more 10/12 now but the liss has maintained now. She still has no jaundiced she gets tired a little bit but nothing like you would notice, we are walking at least a mile a day and she walks that with no discomfort. Infact she said she doesn't really suffer from any discomfort in her side no more as back in Jan and Feb she couldn't even lay on it or have her waistband near it. That's not the case now. I'm wondering if she has been misdiagnosed (hoping and praying with every fibre of my being) and just wanted to connect with other people in the same boat.

@kd300684, welcome. I know a diagnosis of cancer is a shock. I moved your message to this discussion in the Liver Cancer support group
- Diagnosed with cholangiocarcinoma, can this be treated?https://connect.mayoclinic.org/discussion/diagnosed-with-cholangiocarcinoma-can-this-be-treated/

You will find several discussions and many members talking about cholangiocarcinoma (bile duct) cancer. See these related discussions:
https://connect.mayoclinic.org/search/discussions/?search=Cholangiocarcinoma%20
What are your next steps to confirm the diagnosis? Have you considered a second opinion?

Hello new here
Long story ! So back in Feb I took my mum to a&e after months back and forth to drs with upper right pain under ribs and foods not agreeing with her and the drs dragging their feet with treating her 🥲🤬 anyway her blood tests showed liver enzymes to be almost 700 which made them think something isn't rightlets do a cat scan. She had scan and they said something sinister was on it. She showed in hospital for 4 days until she begged to be discharged. As she wasn't jaundiced they said fine. Whilst in hospital she also had mri and mrcp scan. Discharged and waited for pet scan which she had then also had biopsy done with camera down throat. Also had thorax xray. Had meeting with consultant who told us he suspected a bile duct cancer within the liver that had gone in nearby lymph nodes and was inoperable. Mass is 3cm. And after biopsy comes back can hopefully start on chemo and immunotherapy. Wait for biopsy results to then be told they have come back negative! Was getting our hopes up but dr said no we are 95% sure you do have cancer but we obviously never went deep enough in biopsy so now down for another biopsy which is on Tuesday. This time it will go through the skin and use ultrasound. I have done nothing but research since I have found out and I have came across a thing called inflammatory pseudotumor this condition mimicks bile duct cancer and the masses look identical to cancerous ones and can only be confirmed via biopsy. Now the consultant is only going by all the scans so far so am I mad in having hope?!?
Also may I add that since February this has obviously shocked the life out of us all and gave us some trauma it has knocked us into looking at our health. Since then my mums diet consists of juicing and fresh fruit and veg, hardly any food that contains sugar. Hydrogen fresh water. Vitamin c infusions. Lots of vitamins and supplements. Just good clean food really. And build up milkshakes. She has list weight which is inevitable as she was a size 16ish I would say more 10/12 now but the liss has maintained now. She still has no jaundiced she gets tired a little bit but nothing like you would notice, we are walking at least a mile a day and she walks that with no discomfort. Infact she said she doesn't really suffer from any discomfort in her side no more as back in Jan and Feb she couldn't even lay on it or have her waistband near it. That's not the case now. I'm wondering if she has been misdiagnosed (hoping and praying with every fibre of my being) and just wanted to connect with other people in the same boat.

kd300684, I've no experience. Best wishes and hopes for a negative on Tuesday's biopsy. If she was taking Tylenol for pain that can raise liver enzymes. It's heartwarming to read about your relationship with your mum. Hello to her and best luck to the whole family.