Topic: OH MY! Didn't see that one coming!

Lee and I went down to Phoenix yesterday to talk with the top specialists in our state about removing the tumor wrapped around his bile duct. It all started out great...until he said that Lee not only needs the tumor removed, but he needs a complete liver transplant!!!! When he finished his diagnosis, he asked if we had any questions...QUESTIONS! WHAT THE HECK DID YOU JUST SAY!? WAIT A SEC...CAN YOU RUN THAT BY US ONE MORE TIME! YA KNOW, WE ARE PRETTY EDUCATED PEOPLE HERE....MAYBE WE JUST DIDN'T HEAR YA QUITE RIGHT....YOU SAID WHAT!!!!????? Of course, we didn't say that...but I can pretty much tell ya the only thing going through both our minds was WHAT THE @#$%! So off to Mayo in Rochester, Minnesota...any experiences with this hospital....anyone with a new liver out there...or waiting for one....we might have to start chemo before we head on up there...I don't know! UUUUGGGGGHHHHH! HELP!! On the bright side...Lee FINALLY got his appetite back!!! And food is actually tastier to him!  All of your  ideas worked like a charm! Thank you for all of them! He even gained two pounds this week!  Ladies, I don't know about you....but when was the last time we ever thought...Man, I gotta gain two pounds this week! AND I can't wait to get started! BRING IT ON!!

Heather

Re: OH MY! Didn't see that one coming!

Glad the weight is coming back on. I have been almost on, off, almost on, off the liver transplant list in Sweden since June. I am off it now, not permentantly, just sort of. Dont ask. It is a long story...

If you search "transplant" on this site, you will get some information. It has been discussed before. There are REALLY good and REALLY bad statistics with transplants, but the really good ones are the best statistics going in the cc world. Good luck.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: OH MY! Didn't see that one coming!

That's awesome news!!!!! They wouldn't even consider you for transplant if they weren't shooting for an all out cure.

We are at the University of Utah which is mimicking the Mayo's transplant protocol for CCa. It entails chemo, radiation, and then the transplant. They have raised the success rates from 20% survival to 80% at 5 years with this and those are the best statistics we have found out there.

No, it's not been a great party, but is there anything about this that is?

Keep us posted and God bless,

Brenda

Re: OH MY! Didn't see that one coming!

Great news Heather, hope all goes well for you and Lee there. We have some experience with the Mayo Clinic in Rochester MN, it was not involving her CC however. She was diagnosed with Lupus there at Mayo about 12 years ago. The first impression was that it is a bit like an assembly line as you wait and wait in many different rooms for a number of preliminary tests and exams. Everything begins to come together however in a few days as the different teams consult and come together with a diagnosis and an action plan. We used Hotline.com to get a reasonable price on one of the downtown hotels, which makes going back and forth to the clinic very convenient. Dawn