Hello to my beloved cca family,

Scott and I are doing well. His latest MRI results have not come back yet, but we are confident for a clean bill bringing us to 18 months post liver transplant; so grateful to be here; grateful to have each other and our little family.

I have always been so very grateful for the love and support we received here at the cca site. You frequent my thoughts and prayers even though I don't visit this site often. Thank you, thank you.

Hopefully, a very Merry Christmas to all of you and yours; that you will be supported by angels in all your challenges.

God Bless,
Brenda

PS My new blog location: http://www.bypolarbear.com

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(7 replies, posted in Blogs)

Thanks, but what would you call a book like that, Marion? "To Hell and Back" maybe?

My new blog is at bypolarbear.com. Scott set it up for me, but I still need to figure it out and get back into the habit of writing again.

much love and God Bless,
Brenda

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(7 replies, posted in Blogs)

Hi all!

So, I'm going to set up a blog on Wellsphere under an anonymous name that my mother and neighbors won't be able to find. I just need some personal privacy. Not that a blog is necessarily private, I just can't handle anyone close reading my current deepest, darkest thoughts and commenting on them at church.

My cholangiocarcinoma family is always welcome to spy in on my nervous breakdowns, because I know each and every one of you have them too. We do have a connection that rivals blood. Dealing with this wretched disease does that. I'll share the address as soon as I know what it is.

Scott is 15 months post transplant. His last scan in February was clean but showed an aneurysm on the hepatic artery. They couldn't fix it and just tied the whole thing off assuming they would retransplant asap. But miracle of miracles, his liver has not died. So here we sit, dealing with annoying, but not necessarily life threatening things like ulcerative colitis and hemorrhoids. Things always feel as though they are on the verge of falling apart. Still, things are quite good with kids and a live husband and even normal life stuff. I am grateful for normal life stuff.

I've not forgotten you, just moved on a bit; lurking occasionally; happy and sad to see who is here and who is not. Grateful for your support and strength.

much love and God Bless,
Brenda

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(4 replies, posted in Blogs)

Hi everyone,

It's been a while since I've visited the site, but you are still in my prayers. You will always be family.

My blog has just gone private. But, if you send me your email address, I can invite you.

God Bless,
Brenda
bbfranson@mac.com

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(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

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(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

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(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

Because it's stuck to their bum where they can't see it.

lol,
brenda

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(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

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(38 replies, posted in General Discussion)

Loves and hugs to Barb!

brenda

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(4 replies, posted in Blogs)

Heck yeah! Come along and throw on your own fuel. Burn out the breakdown, or else it smolders all month.

brenda

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(4 replies, posted in Blogs)

http://www.bfranson.blogspot.com

I had to start a new blog, because too many peripheral people, aka neighbors and family, had the address. How can I possibly manage a proper nervous breakdown with such an audience?

However, I have no problem whatsoever falling apart in front of this discussion board, so you are all invited to my crazy person blog.

God Bless,
brenda

I'm so happy for you!

God Bless,
brenda

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(38 replies, posted in General Discussion)

Hey Barb,

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

God bless,
Brenda

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(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

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(38 replies, posted in General Discussion)

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

God Bless,
Brenda

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(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