Cholangiocarcinoma - Bile Duct Cancer - anyone else dealing with this?

Greetings and thanks for your post. Since he was "opened up" the PET scan was not necessary. I experience the primary side effects of "chemo brain", brain "fog", confusion, forgetfulness, some gastrointestinal "upset" such as incontinence and loose bowels. I wear Depends. My other side effects include restlessness and disturbed sleep. I take naps as needed. I have muscular weakness and balance issues which present a fall danger. My first indication of cancer was falling. I use a walker. I was hospitalized with an E Coli infection. I got Covid twice and my chemo treatments were suspended while I got my second Covid booster and a Flu shot. I don't go in public and when I go to get chemo I wear a mask. I'm not familiar with Durvalumab. I live in Houston, Texas. I assume you have read my post. I often repeat myself. Forgetfulness is another side effect.

Hello, my husband is scheduled to start chemo right after Christmas, long medical history, started with chemo, then the wipple surgery they thought he had pancreatic cancer when they opened him up and could not do surgery it had spread. So repaired a huge herina and closed him. The surgen switched to bile duct after surgery. He has had many side effects related to chemo not to mention E Coli in his baldder and is now filling up with fluid for unknown reasons.. Hopefully he will soon be over these medical problems. His quality of life has been very poor, very sick. He will be on the same chemo drugs plus you have been and our surgon wants him to add Durvalumab to extend life. The Cisplatin will be given in 2 smaller doses to try to help him tolararate the drug. So we will see. Take care. One question why are they doing PET scans? Our Dr brushed it aside and said they were not the best for this Cancer. We are open to the best scans and would love to hear more on your doctors thoughts. We are just searching for the best care and we live in a small town.

Finally someone else is dealing with this cancer is posting. I have finished my 6th round of chemotherapy, Gemcitabine and Cisplatin, infused 3 times a month. PET scans showed the cancer has not spread and is shrinking. I have transitioned to immunotherapy with Imfinzi. I have had 2 infusions, once a month, and am tolerating the side effects as well as I did with the chemo. I have a PET scan scheduled December 28, 2022. My biomarkers had shown the Cisplatin was hard on my kidneys. I am scheduled to take Imfinzi through March 2023. I am anxious to hear from other people and medical professional with an interest in this cancer.

Hello again, The combination of the two drugs that you mentioned are the ones I was getting at first but they found that the Cisplatn could be affecting my already damaged kidneys. I did get the scan and I have new spots on the liver and some of the growths have expanded. After a consultation with my oncologist yesterday I've decided to take a 6-week hiatus and will get another scan then. Meanwhile she has some other options for me. I'm really sorry about the failed surgery. That sounds awful. Has the disease metastasized to other parts of his body? You might do some web research on the various treatments available. I wish you both well.

I will watch for your reply. Thank you so much for sharing your journey. My husband was on gemcitamine and another one also for pre surgery chemo. The surgery was aborted when they opened him up and found more cancer. I do not know if he can tolarate the new drugs Cisplatin, the oncologest has her doubts if he will be ok on it. I am looking for other combos that work if this new one doesn't. I look forward to your replay. Have a nice week-end.

I actually just finished writing a lengthy note to you but for some reason when I hit reply it didn't work. And right now I'm a bit tired to do it all over again. Add a message here next week after Tuesday as I am having a scan to determine some questions about advancement. The drug I'm on now is called Gemcitamine

Could you share what treatment drugs they are giving you? Also is the cancer stable? Thank you so much for reaching out.

We have not had direction from our local team. We had a phone call from Bob's surgeon at(UWMC) we traveled for surgery. and we discussed what type of cancer and he felt after all scans and what he saw during the surgery (couldn't do whipple and closed him back up cancer had spread) that his best guess is bile duct. So HE suggested the latest research to go with gemcitabine, cisplatin and durvalumab for treatment. Our oncologist says she is worried how well he will tolerate the cisplatin, what have you heard about issues with that drug? I am worried about it with his current infection. My husband is 74 and has been fighting a E.coli infection in his bladder, clinic feels must have gotten it in the hospital during surgery a month ago. On his second oral med to treat it. If this doesn't work we have to try IV med. Thank you for reaching out!

Yup. Diagnosed last December and am stage 4. Started chemo in March and been doing it ever since. My chemo is maintenance but I've been doing okay. Fortunately I've had no real pain what some of the side effects like brain fog can really get you down. I recommend early palliative care along with whatever treatment your oncologist feels necessary.

@lovingwifeterry, it can sometimes be a winding road to a firm diagnosis. This must be unsettling to now shift to accepting bile duct cancer, also called cholangiocarcinoma. To help you connect with others, I moved your message to this existing discussion:
- Cholangiocarcinoma - Bile Duct Cancer - anyone else dealing with this? https://connect.mayoclinic.org/discussion/cholangiocarcinoma-bile-duct-cancer-anyone-else-dealing-with-this/

Here you can connect with others like @afrancesca @kjrita @suchita90 @jerrydrennan @billdemarco @wjdemarco @lvtexas @reddino @maria957 @tball3748 and others.

You may also be interested in these 2 related discussions:
- Calling all Cholangiocarcinoma/bile duct cancer Patients https://connect.mayoclinic.org/discussion/calling-all-cholangiocarcinomabile-duct-cancer-patients/
- Diagnosed with cholangiocarcinoma, can this be treated? https://connect.mayoclinic.org/discussion/diagnosed-with-cholangiocarcinoma-can-this-be-treated/

May I ask what treatment plan was discussed with the cancer team?