1 (edited by deanna20 Tue, 11 Mar 2008 08:35:28)

Topic: Here's our story

March 7 2007 we were at the doctor because my husband Sonny 46 years old and in very good health turned yellow.  We were immediately sent for more test and doctors.  Thank God we were seen by Damien Mallat Dallas Texas.  He found the cancer the size of a nickel in his bile duct.  That hit us like a ton of bricks we have two children ages 10 and 15.  All I could think about was them and cried a lot of tears.  Dr. Mallat set us up with some more doctors in my opinion the greatest ever.  We had an Oncolgist, transplant surgeon, and a radiation doctor.   IT depends on the SIZE of the cancer and if it has spread. Well it sounded very scary but the doctors seemed very hopeful.  They have a protocol we had to follow very closely.  It first started with three weeks twice a day radiation to rid him of the cancer. He was a little weak but we kept positive and kept going.   IT WORKED!!  May 2007 we began the two weeks on an one week off of chemo in the pill form called xeloda.  Three rounds of that two be sure it was going to stay gone.  He did pretty good on it too.  September came and we were at Baylor for a week of outpatient testing for a liver transplant evaluation.  We also began chemo again up until the time of transplant.    We were put on the transplant list with a meld score of 7.  That is very low and without cancer points.  Finally we got upgraded to a meld score of 22.  The moment we had been waiting for.  Two weeks and three days later one Friday night at 11:18 p.m. we were called by Baylor Dallas that they had a liver for him.  The surgery went very well.  It began at 8:40 p.m. Saturday night.  A nurse called me in the room at 11 to let me know that the lymph nodes looked great and they were preceding to transplant.  He was in ICU by 5:00 a.m. on Sunday.  Sonny stayed strong and very positive through it all.  We get up each day now and know we are truly blessed.  He feels very good is back to work and looking forward to our future.  If I can be of any help to anyone out there let me know.  God Bless each and everyone of you fighting this terrible disease.

Re: Here's our story

Hi Deanna,

Scott was also diagnosed with CCa around that same time, but we are still waiting for a transplant at the University of Utah, which used to brag of the shortest waiting time in the USA. I'm beginning to wonder if it will ever happen.

Anyway, I will let Scott know you are here. He stays away from the support group sites, because it's so discouraging to him to see all the things that could go wrong. I know he will love to hear that you are doing well.

God Bless,
Brenda

3 (edited by bbfranson Thu, 09 Jul 2009 18:29:26)

Re: Here's our story

Deanna,

I couldn't reply to your email, for some reason it was sent back.

Anyway, we have been waiting actively on the list since september, and it has been excruciating. I stopped his xeloda because he is so sick and prone to liver infections. There was no tumor to begin with, just cancer cells, and he's been through the aggressive chemo/radiation protocol, so they are not too worried. Also, he had an exploratory laparotomy in september to see if the cancer had spread; the lymph nodes were clean. It's been a fight we didn't anticipate, but we are making it.

I'm grateful you and Sonny are doing so well.  Thank you for posting, today.

God Bless,
Brenda

Re: Here's our story

Hello Deanna,
Thank you for joining this site and sharing your wonderful story as it conveys hope and encouragement to all.   
My best to you and Sunny.
Marions

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER