bbfranson

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Viewing 15 posts - 1 through 15 (of 49 total)
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  • in reply to: New CT scan for John #21411
    bbfranson
    Participant

    Charlene,
    Our prayers are with you.
    God Bless,
    Brenda

    in reply to: We’re done… #21280
    bbfranson
    Participant

    Prayers that you will be carried through this great trial.

    God Bless,
    Brenda

    in reply to: Liver transplantation for cholangiocarcinoma #21377
    bbfranson
    Participant

    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,
    Brenda

    in reply to: Mom just diagnosed #21122
    bbfranson
    Participant

    Mark,
    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,
    Brenda

    in reply to: Good thoughts please #21039
    bbfranson
    Participant

    So, 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

    in reply to: Short update to anyone who cares #21002
    bbfranson
    Participant

    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,
    brenda

    in reply to: The doctor has pulled the plug #20906
    bbfranson
    Participant

    Alice,

    That’s good news, at least. Just know you are both in our thoughts and prayers.

    God Bless,
    Brenda

    bbfranson
    Participant

    Welcome. 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,
    brenda

    bbfranson
    Participant

    http://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

    in reply to: Barb (thecdr) #20334
    bbfranson
    Participant

    Loves and hugs to Barb!

    brenda

    in reply to: You can’t believe everything they tell you! #20568
    bbfranson
    Participant

    I’m so happy for you!

    God Bless,
    brenda

    in reply to: Barb (thecdr) #20330
    bbfranson
    Participant

    Hey Barb,

    Just wanted to add prayers and support for you and yours.

    God bless,
    Brenda

    in reply to: Please Help with nutritional needs #20492
    bbfranson
    Participant

    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

    in reply to: Barb (thecdr) #20323
    bbfranson
    Participant

    Loves, hugs and, of course, prayers!!!!!!!

    God Bless,
    Brenda

    in reply to: Update on John #20099
    bbfranson
    Participant

    I don’t understand why she’d be so upset about him getting treatment for something in his jaw.

    Anyway, lots of prayers going out your way.
    Brenda

Viewing 15 posts - 1 through 15 (of 49 total)