1

(6 replies, posted in Members' Cafe)

I just enjoyed seeing who is currently active on the site.

Brenda

Brenda:

Caregiver to Scott (age 42, cca 4/2007, radiation, chemo, transplant 5/2008)

I'm so grateful to everyone on this site for their love and support. You are always in my prayers.

God Bless

3

(10 replies, posted in General Discussion)

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

Prayers that you will be carried through this great trial.

God Bless,
Brenda

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

6

(34 replies, posted in Introductions!)

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

7

(29 replies, posted in General Discussion)

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

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

Alice,

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

God Bless,
Brenda

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

http://www.clinicaltrials.gov/ct2/show/ … amp;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

12

(38 replies, posted in General Discussion)

Loves and hugs to Barb!

brenda

I'm so happy for you!

God Bless,
brenda

14

(38 replies, posted in General Discussion)

Hey Barb,

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

God bless,
Brenda

15

(10 replies, posted in Nutrition)

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

16

(38 replies, posted in General Discussion)

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

God Bless,
Brenda

17

(6 replies, posted in General Discussion)

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

Such great news! Congrats!

Brenda

19

(2 replies, posted in General Discussion)

How do you know if you've survived? Scott's been "cured" but there's always going to be this little nagging fear that it's lurking. With transplant, the immunosuppression is an invitation for the cc to explode if there's anything left, but they are saying his old liver was cancer free; that the radiation fried it. Is cured and survived the same thing?

One can only hope, and move on in the day we are given; do our best, and let God do the rest.

Brenda

20

(10 replies, posted in General Discussion)

Oh! When my neighbor said, "Well, doesn't he want to feel better?" after I explained that Scott would not be interested in taking her supplements; and a lady at church offered him the help of her blind herbalist, "who is really, really yellow, but I'm sure he could help save his liver," and there's this diet blah, blah, blah, "he had stage 4 cancer and he's still with us......... " until you could just scream.

But, I think about how many stupid things I have said just not knowing; not experienced; not realizing how painful it would be to the other person. There's been times that it would not matter what anyone said; I'd still be annoyed. I wonder if it's just part of the cancer package.

But while we're ranting, I'd like to make a clean purge of the fact that I'm tired of statements like, "...... and then I thought, at least I'm not the Franson's; and all my problems seemed so small. You're such an inspiration, thank you." It makes me feel like saying, "I did not volunteer for this gig, and I do not consider it a privilege to be the worst case scenario designed to make you feel better. Besides that, it's clear you have no idea; we are not even close to being a worst case scenario; we have been so blessed."

All frustrations aside, I have to share that Scott went for transplant on May 26th and is recovering extremely well. We found out this week that the old liver, albeit black/green and huge, was cancer free. It's an overwhelming blessing.

I'm so grateful for all of your support. Thank you, thank you for being here, sharing your vulnerabilities as well as your strengths. I read more than I post, but you all feel like family.

God Bless,
Brenda

21

(5 replies, posted in General Discussion)

I'm trying to think of the medication that gave Scott such severe headaches. You might want to talk to a pharmacist about the meds you are taking and see if there are any that interact, or are notorious for this side effect.

Welcome to the group, by the way. I hope you feel better soon.

God Bless,

Brenda

22

(13 replies, posted in General Discussion)

So scary. My prayers are with you.

So, with the transplant surgeon, did he also say you were a candidate for transplant? Is the university there involved in any experimental protocols for cc? If not, I think I might would do some fishing. Everything I have read has given the highest survival rate with early detection and transplant. It sounds like you might would qualify.

The protocol Scott, age 42, went through had chemo/radiation/transplant even though they couldn't find a tumor; there were only cancer cells. He is recovering  from the transplant, but still carries the buried anxieties of it recurring.

The unknown is terrifying. I think you should go back to the transplant surgeon; and research some different facilities. You can get a copy of the University of Utah cholangiocarcinoma protocol by calling Crystal at 801.585.2708. Dr Schwartz is our transplant surgeon. He is looking for more qualifying participants for his research study, and would probably look at your file.

God Bless, good luck, hang in there, and love those babies,

Brenda

23

(13 replies, posted in Introductions!)

Lisa,

Our prayers are with you and your mother.

God Bless,
Brenda

Thanks to all for the prayers and support. We're hanging in and doing well. I'm so grateful for the challenges of recovering as opposed to hitting our head against the wall waiting for a donor.

God Bless and much love,
Brenda

The liver is in! They will try to take Scott off the ventilator in the morning. No sign of cancer, but we won't know for sure until the biopsy, or whatever they are looking at, comes back on Thursday. It's more intense than I had imagined, but so hopeful I can't complain.

Thanks for all your love, support, and prayers,
Brenda

ps I'm keeping the blog up to date for all my family and friends. You all are both and invited. bbfranson.blogspot.com