1 (edited by bbfranson Sun, 17 May 2009 10:11:46)

Topic: hi

We were invited to this forum by Stacie, thank you.

My husband, Scott was diagnosed in May 2007 with cholangiocarcinoma. He has been thru an experimental protocol at the University of Utah hospital and is currently waiting for a liver transplant.

It's nice to have found a forum where you know that the people reading this will know the pain and anguish laced in those last two sentences.

Brenda

Re: hi

Hi Brenda my name is Valerie. My husband Rand was diagnosed in March 2007, we live in Layton Utah.

This site has been a very big help to me I've come often to find answers to my questions.

I hope all goes well with the transplant.

Re: hi

Hi, Brenda.  Welcome to our community - I sure do wish that you and Scott did not have a reason to be here, but I'm glad that Stacie directed you our way.  You guys are in my thoughts and prayers - I hope the transplant comes through quickly.  I cannot even imagine the anxiety that comes with waiting.  Big hugs to you, and support will be coming in spades from the community here.

30-something caregiver

4 (edited by bbfranson Sun, 17 May 2009 10:12:11)

Re: hi

Thanks.

I've been exploring the site a bit. Love the logo and it's a nice format.

I admit, I feel guilty after reading other people's experiences with CC. Scott's was found by chance from an ERCP for his primary sclerosing cholangitis. There's no tumor, just cells; precancerous, really. They've not given him statistics or any indication that this protocol, copied from the Mayo, wouldn't work. It's not been a pleasant experience, but he should live.

This site makes his diagnoses more real to me. The faces behind the statistics are more real. I'm sobered and feel pain and grief for everyone going thru this. It's just so consuming.

My thoughts and prayers are for everyone in this community.

Brenda

Re: hi

Brenda - please do not feel guilty.  I imagine everyone on this site is happy for you and Scott.  I am not aware of a single person in this community that actually caught the disease in the precancerous stage, so I imagine many share the hope I feel that there actually are doctors monitoring the "at risk" patients, and catching the issue before it becomes cancerous.

As an aside, I have read that some patients have had quicker success at receiving the transplant by going to Mayo's facility in Florida.  I cannot recall why, but maybe that is worth looking into further.

By the way - I am in love with Scott's work!  He is so very talented.  I just sent him an email regarding a couple of doodles.

30-something caregiver

Re: hi

Brenda....

Don't feel guilty!  We love to hear good news and from the sounds of it.  It is good news.  It gives us all hope.  I hope that you and Scott keep us updated on her treatment and recovery.  Keep up the fight. 

Chrissy

Re: hi

Brenda...It's okay to feel and have the emotions as you mentioned.  We have collectively supported each other through this site.  We all have had our moments.  My thoughts and prayers are coming your way.  I'm glad to hear they caught Scott's condition so early. 
God Bless,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: hi

Hya Brenda

As Jeff commented we all have the emotions you have mentioned.

I would say welcome to this board, but not that I wish for people to be here.

For some of us though there is so much hope in your message that perhaps one day CC can and will be diagnosed much earlier and with more understanding by the medical people involved have an impact on more lives being saved. love and llight Alan's mom

U.K.Member

Re: hi

Thanks all

We're currently #1 on the type A list for the Utah/Nevada region. We were called for transplant last week with a potential donor, but then the donor fell thru. If I wasn't mental before all this started, I'll surely be mental after.

We're grateful to be at the UHU because they will be using his liver and blood for research. They are looking for a more accurate marker for CC in order to diagnose it earlier.

Meanwhile, we wait. Scott takes Xeloda to hopefully keep everything in check. I understand that compared to most chemo it is mild, but it really kicks his hiney.

Thanks again and prayers for all,

Brenda