Topic: Let's fill this one up

Rick has provided us with a thread solely related to Cholangiocarcinoma transplantation.  Thanks Rick.  I can't wait for this to be one of the most popular places to visit.

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: Let's fill this one up

WOW!  We are so progressing! Thanks Rick.

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: Let's fill this one up

Yep thanks Rick! The more information and subjects for everyone to discuss the better for all.

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Let's fill this one up

Gavin...hey bud...Congratulations on your new "Title"!!!!!!!!!!  Just noticed it. You didn't say a word in the last e mail....little stinker! I am so happy to see this. Luv Ya

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: Let's fill this one up

Thanks Lainy! Glad to be able to help out in any way if I can! Hope you enjoy your weekend!!

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Let's fill this one up

This is a great thing!  Since transplantation is still not a widely known or practiced treatment option hopefully this will draw a lot more attention to it and help keep people informed.  I firmly believe this is the very best treatment option for the people that qualify for it. 

I'm happy to talk to anyone who has questions about it as I went through the protocol, but didn't end up getting the transplant.  There are others here who were able to complete the protocol and transplant who have more first hand knowledge as well.  Raye has mentioned that he is very willing to talk to people about his experience with this option as well, you can look him up here by using the search function.  Ashley is also very knowledgeable about the option as her Mom successfully completed the transplant protocol.

Only about half or 2/3's of the people who enter the protocol will be able to complete it due to disease progression/discovery of metastases or other criteria which exclude you from the protocol but for those that make it through it is generally considered the best chance at a cure.

Best of luck to everyone who is looking for treatment options.

Rick

Ulcerative Colitis 1990, Stage 0 colon cancer and subsequent colectomy with J-pouch in 7/2005, PSC 7/2005, Klatsin CCA 8/2009

Re: Let's fill this one up

Well done Rick. That Marion sure is persuasive isn't she? LOL Thanks to both of you to have this link available. Let me add, even if you're just curious about transplant please feel free to ask questions. It helps to get this message out there just as much.

Raye

I'm a passenger on planet Earth and God is driving.

Re: Let's fill this one up

Thanks for that information, Rick - really interesting.

As far as I am aware, transplantation is not considered an option here in the UK.  Generally, surgery is considered the best option but, as we all know, diagnosis is so difficult and often so late, that surgery is ruled out.

I would be really interested to know if many transplants have taken place in the USA, and what the outcomes have been.

Love and positive thoughts.

Helen

Re: Let's fill this one up

Helen,

I'll have some time next week and I'll put some effort into getting a figure for you for the last 17 years.

I'm a passenger on planet Earth and God is driving.