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

I have been trying for almost 6 weeks to get my husband an appointment at MD Anderson. Our insurance won’t cover it since it is out of network. I did a go fund me and raised more than enough to cover the cost for new patients. I have done everything they have asked for, a referral from PCP and oncologist, the liver biopsy tissue was FedEx to the pathology department at Anderson, and received the pathology report from Anderson. I was told he would be assigned to the Gastro Department. Now they tell it has to go to Medical Review. Has anyone had such a difficult time getting a first appointment at MD Anderson?

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.

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?

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

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

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 🙏💕

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.

Thanks so much for sharing 🙏💕

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.

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.