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

I am John, living in Houston. I was diagnosed with Cholangiocarcinoma a year ago. My first indication of a problem was, "I've fallen and I can't get up" lol, just like the TV add. I went to my primary doctor, had a blood test which came back with a biomarker showing too much Calcium. A biopsy and then a PET Scan showed 3 Bile Duct Lesions. Fortunately the cancer had not spread. My Oncologist started me on Chemotherapy Infusions of Gemcitabine and Cisplatin which proved to be hard on my kidneys. I had a port implanted for the infusions. I am now on the Immunotherapy drug Imfinzi which is less toxic than chemo. These treatments have kept the cancer from spreading and the 3 lesions are shrinking. My side effects are the same for both types of treatment. For 3 days I don't want to eat or drink plain water. I'm tired, sleepy, have brain "fog", confusion, forgetfulness and muscular weakness, restless sleep and rest when needed. Lights and sounds are bothersome. I hope this helps and feel free to contact me on this forum.

My name is John. My research showed that Mayo-Rochester is one of the top research facilities in the world for Cholangiocarcinoma Treatment. I live in Houston and am being treated here currently with Imfinzi immunotherapy. My cancer did not spread and my PET Scans show it is shrinking. I tolerate the side effects well. Feel free to share with me on this forum.

Hi, i have been to MD Anderson Cancer Center in Houston in 2006 but it was for Uterine Sarcoma Cancer. The doctors I had were wonderful. My cancer was stage IV. Ive been doing well since 2006. Today I have other health problems not related to that cancer. I met many people undergoing different treatments (at MD Anderson )for all kinds of cancer. I met a husband and wife who’s husband had been transported on a gurney from CA because he couldn’t walk and had been given less than 6 months to live. He was happy, walking, on his way home after successful stem cell therapy. I also met someone who came from a small town where the local hospital had removed prostrate and botched the surgery but MD Anderson could not repair the damage that had been done. I have nothing but good things to say about MD Anderson Cancer Center and the doctors/surgeons that i had.

Thanks so much for sharing 🙏💕

We went to a “teaching class on chemotherapy “ today. My husband starts his first round of chemo tomorrow. The three drugs he will be receiving during his series of treatments are IMFINZI, PLATINO, and GEMZAR. Any info or experiences with these drugs is very much appreciated. I am still waiting to hear from MD Anderson in Houston.

I didn’t realize there were several MD Anderson facilities in Houston. Which one is closer to the Rotary House?
Thanks in advance for responding 🙏💕

You are wise to learn as much as you can about Chemo and Immuno Therapies. I did Chemotherapy for a year as I stepped up to the most used First Line chemo drugs Cisplatin and Gemcitabine. Your reaction and bloodwork to these powerful drugs will be watched carefully for good tolerance of side effects when I tolerate well. PET scans and blood work indicated my Stage I Cholangiocarcinoma had not spread and the 3 lesions were reducing in size. My Oncologist has stopped my chemotherapy and put me on the Immunotherapy drug Imfinzi. The Cisplatin was too hard on my kidneys. Imfinzi side effect are same as chemo so I tolerate them well. I know that Platino and Gemzar are recommended First Line Treatments. MD Anderson of course is considered the best cancer hospital in the world. My daughter had her Thyroid Cancer surgery there. I use Genesis Cancer Clinic as it is closer to my home and transportation. Best of luck and stay in touch on this forum. John

Often you may be started on the chemotherapy drugs Paclitaxel and/or Carboplatin to test your tolerance of chemotherapy as I was. They maybe considered to be Second Line Treatments as you "move up" to Cis-Gen. John

has anyone else had problems with side effects after you stopped chemo? We stopped after his surgery, he got a terible E Coli bladder infection they think in the hospital, then other things, bad nausia and sleeping all the time and very weak blood clots, also he started filling up with fluid and had to have it pumped out. Worse than during cemo. Have a pallitive Doctor on board to try to help find drugs to help. They are delaying his next cycle of chemo. Did anyone have success getting help with the side effects?

John here with an update from my latest PET Scan after my second Imfinzi infusion. The cancer has not spread beyond the bile ducts and liver. Blood work shows my liver is functioning well. Some of the small areas of cancer in the liver have disappeared. The largest lesion showed some growth but my oncologist is very happy with the results so we are continuing with 4 more infusions of Imfinzi. My side effects are the same as chemo only not as strong.