1 (edited by marions Tue, 22 Nov 2011 22:15:40)

Topic: Is transplantation an option? For whom?

https://www.medicine.ufl.edu/gastro/curriculum/14.pdf

take note of:
Entry criteria for liver transplantation in patients with cholangiocarcinoma

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Is transplantation an option? For whom?

Well, I read it, but not sure what I read, and how to understand it.  Looks like really not a lot of data to decide one way or another, on both resection and transplants.  Like flipping a coin.  I'm not being flippant about my remarks, I just don't know enough to understand all I read.  But it looks like recurrence is going to happen no matter which way you go.

Open to other comments and help?????

Grover

Re: Is transplantation an option? For whom?

Haha Grover, welcome to the world of WHAT? I myself tend to steer away from that which I do not understand and stick to the things I feel like, the caring stuff. But I do know how important and powerful it is to be informed with CC. Thank you for your lovely note this morning, you are just the nicest man!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Is transplantation an option? For whom?

Hi,
I cannot open the site and read the article;but  base on what I read,recurrences do come back no matter which route you go if you have the choice.
If memory served me correctly;a couple month ago on this web site , a CCA patient who had a liver transplant just a year ago did have recurrence. Recurrence was reported in 52% of patients who had transplants when combining all studies(total pt.pop=543 patients).compare to resections,the recurrence is about 65% in general.
The Mayo Clinic liver transplant program which reported a 5 years survival of 82% was reported for patients with CCA arising in the setting of PSC.
Currently base on the summary from uptodate.com literature review board,"orthotopic liver transplantation cannot be considered as a standard form of therapy for localized CCA at present. It should only be considered for selected patients with early stage unresectable hilar disease who have successfully completed rigorous staging and neoadjuvant therapy. Such clinical protocols are available at only a few transplant centers."
I hope the info. helps.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Is transplantation an option? For whom?

Grover...I don't believe that many of us understand it either.  For that we consult with the specialists. 
Those patients diagnosed with PSC clearly are at the advantage of receiving a transplant as their disease is confined to the bile ducts and liver. They also undergo vigilant monitoring of their disease. 
Cholangiocarcinoma is lumped togeher: intrahepatic, extrahepatic, and hilar, including, Klatskin (at bifurcation.) 
Due to the fact that this disease lacks an early detection method, the majority of CC patients are diagnosed at a later stage of disease progression.  And, unless that progression is confined to specific parameters, a liver transplantation is not possible.
Those few, early stage, diagnosed patients however, should be given the opportunity to investigate the possibility of transplantation.  Based on that information they will be able to make an informed decision as to how they want to proceed with their approach to this disease. 
The majority of us however, will continue to fight this disease with all our might with the current treatment options available to us.  And, we will continue to push for early detection and accelerated, medical, research. 
All my best wishes,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Is transplantation an option? For whom?

Good response Marion.  I am going to fight this no matter what it takes.  I talked transplant & resection options with my onc. last Friday.  My CT scan last month showed some suspicious lymph nodes.  I didn't understand everything he said, as my head was once again spinning.  But, I believe he said a transplant would compromise my immune system.  And I believe from our conversation, he does believe in transplant as an option for CC.  According to the Onc. IU has done several transplants for CC patients over the years and was one of the first to do them.  I truely do believe that if he thought it was an option for me, he would go for it.  So, until something else comes along, I am going to fight this as hard as I can with the tools that I have at the moment.

Re: Is transplantation an option? For whom?

I am a CC survivor due to a transplant as you all know, so of course I am a major advocate and wish all could be a candidate. I was lucky to be diagnosed by one of the best doctors, Dr. Guiseppe Aliperty and immediately (with in 36 hours) was put in Dr. Chapman's care, a second opinion was never needed and so many questions weren't asked because we were given so much info and HOPE, and confidence in this was the only way. I would get on this site and could not relate, because I was getting "cured", I didn't think I was as sick as everyone else LOL!!!
I never even thought about reoccurence and don't think I asked about it till this year, so I asked my oncologist and she said-"Cathy this is so new we have no long term data and even though we believe it was all removed there could be one micro cancer cell lurking, but we believe this is a cure. We need you to keep living to prove us right!!"
Lots of prayers-Cathy

Re: Is transplantation an option? For whom?

That is what we need to keep in mind - whatever the approach - the boxing gloves come on and they stay on.
Hugs to you both,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

9 (edited by PCL1029 Mon, 05 Dec 2011 17:42:44)

Re: Is transplantation an option? For whom?

Hi,everyone,

As patients  and caregivers ourselves,we need to be HOPEFUL ;we need to be knowledgeable ;we need to be current and we need to be PRACTICAL in search of finding the possible cure for this disease(we don't have one right now).

It is always my belief that  at this moment,because of the time frame is relatively short for patients;the best way to help our CURRENT patients is to  find  and improve  the current  treatments that work now; research and  prepare by choosing the  more effective treatments with less adverse reactions  for the future in case of the CCA comes back. (recurrence is a fact.)

We should be vigilant and careful about all the info.we read on the internet .We should not have false expectation on treating this disease. One treatment working perfectly for one patient did not mean the same will apply to another patient.
Conventional medical treatments are "evident-based "on research as well as clinical experiences; and I think that is why the oncologist said:
-"Cathy this is so new we have no long term data and even though we believe it was all removed there could be one micro cancer cell lurking, but we believe this is a cure. We need you to keep living to prove us right!!"

And that is how doctors talk to patients; in short,you have to read between the lines."
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.