July 16, 2014 at 5:28 am #83051kris00jParticipant
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.July 16, 2014 at 4:07 am #83047mbachiniModerator
Cathy that is such great and wonderful news! I love your attitude and how you tell your story! I love the fact that you never lose sight of what it took to get your new livers….the sacrifice that others made. I love that you are so adamant about not wasting your gift! You Rock!!
MelindaJuly 15, 2014 at 10:28 pm #83050
Cathy…..fantastic. Congratulations, our wonderful poster child.
MarionJuly 15, 2014 at 9:08 pm #83049lainyParticipant
Dear Cathy….YIPPEE…..HAPPY BIRTHDAY to your liver!!!!!!!!!!!!July 15, 2014 at 8:37 pm #83048jathy1125Participant
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!!!
CathyJuly 15, 2014 at 8:25 pm #83046mlidoudouParticipant
A free copy of the paper is available at this:
MaggieJune 18, 2014 at 2:19 am #83033seekMember
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.
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
EmadJune 18, 2014 at 2:02 am #83032
This peer reviewed study is indicated for perihilar (extraheptic) disease only. Curative resections are the goal however; not all people are able to undergo such complex surgery.
The small group of extrahepatic perihilar CCA patients must respond favorably to prior chemotherapy for consideration of a transplant.
The good news is that liver transplantations are looked at much more favorably, but again, this still leaves out many patients.
MarionJune 18, 2014 at 1:38 am #83031
Liver transplantation for cholangiocarcinoma: current best practice.
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.
DukeJune 18, 2014 at 1:38 am #83030
I agree with Matt. Only a select (few) are eligible for transplants, but it is important to know that those that a eligible are identified by a qualified physician willing to consider a liver transplant. For those rejected by their physicians for transplants, a patient friendly explanation should accompany the report. Liver transplantations for extrahepatic disease encompasses a very select group, transplantation for intrahepatic CCA is coming more in the picture as well. But, the jury is still out re: long term effectiveness for the later.
MarionJune 18, 2014 at 1:34 am #83029
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.
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.
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.
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.
[PubMed – in process]June 18, 2014 at 1:15 am #83028
I think the “bar” Matt is referring to is no metastases. Hopefully, this will be one of the factors presented in the Foundation Registry.
Whoever has a copy of the report, please post the list of the 12 centers referred to.
DukeJune 17, 2014 at 8:26 pm #83044jathy1125Participant
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-CathyJune 17, 2014 at 7:33 pm #83043mattreidyParticipant
I was diagnosed in Dec 2013 and took it upon myself to go to the Mayo Clinic in MN where I underwent two weeks of testing for their transplant protocol. I was lucky and resection without transplantation was an option that I choose and it was successful.
I do have to say that the numbers referenced for the protocol can be misleading. The “bar” to be accepted into this transplant protocol is very high. They only accept the most healthy individuals so that has to skew the numbers upward, I would think.June 17, 2014 at 5:41 am #83036lisacraineParticipant
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.
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