Mayo protocol has 65% BDC cancer free at 5 years

I need to chime in here about MSKCC. They are a research hospital. Depending on the onc, you might get an idea about another facility. But they don’t make money by sending their patients elsewhere. In my case, Dr. Nancy Kemeny would never suggest she isn’t the best. I tried to talk to her about trials and she basically said… Look around and see if you find something. It’s up to you.
As far as the “cherry-picking”: they are talking about a specific group of cc patients getting a specific protocol. Yes, it would be wonderful if we were all diagnosed at an operable stage. Then cc would have a much better success rate. For many trials, even, they look for a specific group of cc patients. The lucky ones have success.

Cathy…..fantastic. Congratulations, our wonderful poster child.
Hugs,
Marion

WOOHOO!! May 24,2014, 5 years cancer free and July 5th 2014 my second liver is 5 years old!! I am proof that transplants work wonders!!!
Cathy

Matt, I agree with Cathy and Chuck.
The most important factor for cholangiocarcinoma patients to qualify for a liver transplant is: Not having mets to any other organs or lymph nodes.
In my modest opinion, other than major health issues, being NOT very healthy due to liver complications might give the patient a higher MELD score and get him a liver faster.

Dear Chuck,
Going back to the main subject in this post, I agree with Wayne that most doctors do not explain to their patient all his treatment options . In case the doctor’s opinion is that no treatment will help, the patient is in title to understand WHY NOT ??? Just Simple life ethics.
That is assuming that the doctor knows what he is talking about, sadly this is not the case in 90% of the time with this cancer.
There are so many patients and families that are dealing with this cancer and are not fortunate enough to find a good doctor, go to a big cancer center or a major hospital. And no one hears about them. The blessed survivors on this board are the minority. Hoping that one day will bring cure to all

Emad

Liver transplantation for cholangiocarcinoma: current best practice.

http://www.ncbi.nlm.nih.gov/pubmed/24811436

Gavin’s posts don’t seem to get the traffic they deserve. They are not the most optimistic or the easiest to decipher, but they present the cutting edge of research.

Duke

From Gavin: (Who finds the greatest stuff. Now I just need a medical degree to understand it.) I will find the actual link and post it next.

Abstract
PURPOSE OF REVIEW:

Cholangiocarcinoma is a rare tumour with dismal prognosis. Only radical resection offers a chance for cure with reported survivals ranging from 25 to 45% at 5 years. Considering the low rate of resectability and lack of efficacy of other treatments, liver transplantation has emerged as a reasonable approach to cure selective patients with unresectable diseases. The use of liver transplantation, however, is associated with the inherent risk of early tumour recurrence due to the need for immunosuppression and the poor survival rate. This review will focus on the role of liver transplantation in treating patients with cholangiocellular cancer.

RECENT FINDINGS:

The indication of liver transplantation for cholangiocarcinoma has evolved over time moving from an absolute to a relative contraindication until eventually becoming the best indication for a small group of patients presenting with unresectable perihilar cholangiocarcinoma, when associated with a neoadjuvant chemoradiotherapy. In contrast, the indication of liver transplantation for intrahepatic cholangiocarcinoma is far from being established and should be offered only under protocol, mainly for small tumours in the setting of cirrhosis.

SUMMARY:

The poor outcome of cholangiocarcinoma, irrespective of the therapy, justifies the search for novel approaches. Only selective patients with perihilar cholangiocarcinoma subjected to a neoadjuvant protocol may qualify for liver transplantation.

PMID:
24811436
[PubMed – in process]

Matt-I am not sure if only the “most healthy” is correct. I was 40 plus pounds overweight and had cancer!! The gentleman who was just transplanted is diabetic.
I think the key to our treatment and success is to have all info presented and ruled out by a doctor who believes there is options.
Matt I think your case is a great example of exploring options.
Lots of prayers for continued success-Cathy

Daisy,
I saw the pictures of your Mom at the race and she looks fabulous. You are such a blessing to her and your Dad. I think the most important advise for anyone diagnosed with CC is to get many opinions and never give up hope. I have learned so much from this board about our disease and treatment options.
Hugs
Lisa