Hi Tess. I see that you have received some great information from fellow users who appear to be very knowledgable and very helpful. I will share with you some additional information that might have already been explained that my family has experienced.
My mother who is a young 63yrs old and was in great shape physically and mentally was quickly inflicted with Cholangiocarcinoma. We also went to Mayo Clinic. The Mayo clinic is widely considered the best Cholangiocarcinoma Hospital in the world especially when it comes to Liver Transplants. The Doctors at Mayo were incredible and personable. The scheduling and administrative parts were lacking at least in our situation. But overall, the Doctors were honest and gave their best opinions. But their opinions were based upon traditional medical approaches to CC. They explained they could do chemo and radiation but it might only give her an additional 3-6 months to live. Once doctor gave us about 1 month to live (that was almost 3 months ago).
My mom was not a candidate for transplant either. The transplant procedure for CC has changed from a few years ago to today. It was explained that they just dont do as many as they once did. Today, there are several factors that determine transplant candidacy. The tumor is expected to be less than 2cm. No metestasis can have been found. Additionaly, they determine if you are strong enough to survive a transplant due to having to take anti-immune drugs for the rest of your life. Five years is usually the most you can hope for if the transplant is successful according to what the doctors explained to us.
I researched the internet including Pub Med for almost a month and found there are many success stories with CC disease. The only problem was finding a facility that would implement the treatments because many of them are new (it generally takes MD's 5-10 years to implement new technology or new approaches or for the information to get out). In my research I found that an integrative approach including chemo, radiation, I.V. Nutrition, resection and other approaches are the keys to fighting CC. My mother is currently residing in Cancer Treatment Centers of America. She is one of the first patients in the nation to recieve this fully integrated approach. The first goal was to stop the metastis and growth of her tumor and to stop her billirubin from going to high. We have accomplished that and now are working on shrinking the tumor to a size that will be manageable to resect in a strategic fashion. We implemented High Dose Vitamin C IV therapy which is shown in clinical studies to stop cancer growth and even kill cancer cells. She gets high dose of Glutathione IV one day prior to Vitamin C Therapy to protect the normal cells from chemotherapy and Radiation and even damage that high dose vitamin C could do if there was no glutathione. The next day she gets her Vitamin C IV high dose (needs to be high enough where the vitamin c turns into hydrogen peroxide in the cells). After glutathione and Vitamin C days she usually has her best days. With the Vitamin C IV we also have her on large doses of Alpha Lipoic Acid, Vitamin D, Vitamin K, Melatonin, Vitamin E, B-12 and B-complex vitamins all at high therapeautic values that have research behind them. She is also on Probiotics, EFA, and targeted Homepathics. We started her on Oxyplatin thru the kidneys since her billirubin was so high. We now are increasing her Oxyplatin and all of the IV nutrients.
I am proud to say, that prior to this integrative approach my mother was bedridden, couldnt walk, couldnt get out bed by herself, couldnt lift her leg on the bed to put a pillow under it, could not take a shower or bath, was in incredible pain, couldnt eat, nausea, and no energy. She had not been outside for 2 months. She was expected to get worse.
Now my mother is getting up every morning and taking a shower. She walks to her appointments that are filled each day. She went to see a movie at a theatre two weeks ago. She went and played her favorite game of video poker at a local casino. She is going shopping and goes out to eat at restaurants. All of these things we take for granted were stripped of her and now she is able to cherish these simple acts we call normal living.
Today, my mom is still fighting this terrible disease, but we truly believe she is on the her way to beating this challenge. All of her blood work has turned back to normal including platelets, RBC, etc. The doctors even said if her billirubin levels were not high (5-8), it would be difficult to know she has CC. The doctors at the hospital have been amazed with her results even commenting they didnt recognize her from her initial visit.
I have just finished additional research to lower Bilirubin which I will provide to the physicians this week. I have learned from all of this that there are options and solutions to these diseases if you take the time to do the right research and utilize knowledgeable people who can guide you in the right direction. I also learned you cant sit back and expect the physicians to do this research due to their busy schedules and just dont have time to read the vast amount of new research that surfaces each day.
Best Regards and Good luck