bbfranson
Forum Replies Created
-
Posts
-
My husband, Scott, is two months out from transplant and is doing fabulous. The University of Utah has adopted the cholangiocarcinoma protocol from the Mayo clinic with a few adaptations. It involves nitty-gritty screening, aggressive radiation and chemo, a staging laparotomy, and an agonizing wait for an appropriate liver.
We were treated wonderfully at the University of Utah, and were impressed by their consistent advocacy on our behalf. I’ve not heard whether or not they treat recurring tumors. It’s definitely worth asking, though.
God Bless,
BrendaMark,
So sorry your mother has this terrible disease, but welcome.Scott took marinol to stimulate his appetite. He still lost 40 pounds throughout the year, but he couldn’t eat anything without it. I think it helped mellow him out a bit (I’m a bit tempted to snarf the leftovers, but……… )
Anyway, I hope things are the very best they can be under the circumstances.
God Bless,
BrendaSo, I’m voting that kris is just constipated, and that an enema is going to fix all this. All in favor, aye!
Love ya, kris. We’re all rooting for you!brenda
I’m sorry, but why are they hydrating her? Isn’t one of the points of being with hospice is that you don’t have to do anything that would prolong suffering? It just seems………….. I don’t know. I really don’t know, but my heart hurts for you and your family. You’re in our prayers.
God bless,
brendaAlice,
That’s good news, at least. Just know you are both in our thoughts and prayers.
God Bless,
BrendaWelcome. So sorry you have to deal with this, but this forum is a great support.
I wonder if you would qualify for the transplant protocol that Scott went through. It has a much higher success rate, statistically, than resection, but the tumor must not have spread outside the liver. You would need a second opinion from a dr that does transplants for cca in order to know for sure.
Our surgeon, Dr Schwartz, at the University of Utah is looking for people with early stage cca. He is trying to duplicate a study from the Mayo that had an 82% survival rate after 5 years. I highly recommend him.
Scott is 5 weeks out from transplant and doing great.
Good luck and God bless,
brendahttp://www.clinicaltrials.gov/ct2/show/NCT00708877?term=cholangiocarcinoma&rank=4
I have been on this clinical trial since May of 2007. On Memorial day (May 26, 2008) I received a liver transplant. That was almost 6 weeks ago. I am feeling great!
The cancer treatment is quite aggressive and it really has been a rough year. I completely trust the doctors and feel that I received first rate care.
If you have any questions, I will try to answer them.
Scott
So, it didn’t matter what I put in front of Scott. He couldn’t eat anything until they started him on Marinol. It’s a marijuana derivative in pill form used to stimulate appetite. He still couldn’t taste, but at least he was hungry enough to eat.
God Bless,
brenda
