A few years back I located a site titled "faces of cholangiocarcinoma" and now I can't locate it. Has anyone seen anything like that? I thought it was affiliated with this site, but I guess not. Just let me know. Thank you!

Hello everyone! It is with a heavy heart that I have to tell you my momma Sharon Kaye Smith passed away July 9th. Since January she had several stint complications, replacements, infections etc. On June 3rd we went to Dallas for a check up and we could tell over the prior few weeks, something wasn't right. The pain was to great for her to have her MRI, she was admitted. The infection from her stent had caused a perforation of the bile duct, which caused severe infection in the abdomen. After a day of Iv antibiotics and pain meds, she had several tests which showed new mets to the liver. Dr Goldstien explained her options, 6mos hospital stay, bile duct reconstruction, open wounds before they could even treat the cancer. And with how fast the mets had presented themselves from our last test 45 days prior, well, the out come of no surgery and surgery appeared to be the same. She elected to stop treatment. I brought her home to northwest Arkansas where we entered a wonderful hospice facility and 30 days later she completed her journey here on earth. My point is to remind all of the newly diagnosed and the current fighters, that she was originally diagnosed in August 2004. Almost 9 years! HOPE. PRAYER. LOVE AND FAITH. You will know when it's time, and until then, my family and I will be praying for you and yours, we will raise money and awareness of this tragic form of cancer, we are here for you and love each of you! I know now what a warrior looks like and thank God for every moment I spent with her. She was truly my best friend and always will be. She said "it's not goodbye, its only ta-ta for now". Knowing that is true helps to bring some comfort. All my love, Mel

Update -

Marion - I posted the Dr info to the link you attached.

Mom had surgery this morning and had the blockage removed and stint put in. They have noticed a small spot on her lung. We are waiting on the Dr to come update us further. They did not seem concerned and neither does she. Her response was, "if I can live 9 years with the fastest most fatal cancer I have ever heard of, rest assured that treatment for the lung doesn't have me scared." With an attitude like that, its hard not to be optimistic.

I'll keep you guys posted, and thanks a million for the support.

Melissa

4

(187 replies, posted in Hospitals)

This is my mothers Dr who has successfully treated and operated on my mother since diagnosis in August 2004. 9 Years! I encourage anyone with CC to contact him. He has an excellent bedside manner, works well with the families and his knowledge and talent is truly a God given miracle. He is honest and straight forward and proactive. His team will answer calls and emails day or night.


214-820-2050
Dr. Robert Goldstein, MD, F.A.C.S, Baylor University Medical Center, Surgical Director, Pancreas Transplantation
Surgical Director, Living Donor Liver Transplantation
Hepatobiliary Surgery

Following is a plug for the DR -

Dr. Goldstein is a hepatobiliary surgeon and the surgical Director of Pancreas Transplantation and Living Donor Liver Transplantation at Baylor University Medical Center in Dallas. He is board certified in general surgery and critical care medicine.

He currently oversees the Baylor Liver and Pancreas Disease Center offering comprehensive evaluation and treatment for liver tumors, pancreatic tumors and chronic pancreatitis. He has a special interest in bile duct tumors and injuries.

The following treatment options are available to liver and pancreas patients at Baylor University Medical Center and Baylor All Saints Meidcal Center in Fort Worth:

Chemoembolization
NanoKnife (irreversible Electroporation)
Cyberknife®
Radiofrequency Thermal Ablation
Advanced Laprascopic Resection
TheraSpheres®
Transplantation
Total Pancreatectomy

Thanks everyone fpr your thoughts and prayers! M- we live about 5hrs from Dallas, so not bad but far enough to make you tired.

Susie, She's a super trooper!


Her doctor is the best! Dr. Robert Goldstein, MD, F.A.C.S, Baylor University Medical Center, Surgical Director, Pancreas Transplantation
Surgical Director, Living Donor Liver Transplantation
Hepatobiliary Surgery

Following is a plug for the DR - smile

Dr. Goldstein is a hepatobiliary surgeon and the surgical Director of Pancreas Transplantation and Living Donor Liver Transplantation at Baylor University Medical Center in Dallas. He is board certified in general surgery and critical care medicine.

He currently oversees the Baylor Liver and Pancreas Disease Center offering comprehensive evaluation and treatment for liver tumors, pancreatic tumors and chronic pancreatitis. He has a special interest in bile duct tumors and injuries.

The following treatment options are available to liver and pancreas patients at Baylor University Medical Center and Baylor All Saints Meidcal Center in Fort Worth:

Chemoembolization
NanoKnife (irreversible Electroporation)
Cyberknife®
Radiofrequency Thermal Ablation
Advanced Laprascopic Resection
TheraSpheres®
Transplantation
Total Pancreatectomy

Update: Blood work came back showing elevated GGT, AST, ALT, direct bilirubin of 5.5. We sent the results immediately to her specialist in Dallas, who in turn told us to leave first thing Weds and drive to Baylor University Medical Center in Dallas. We arrived yesterday around 1 and she was admitted. Ct scan with contrast this morning and now waiting for the treatment plan. They believe it is an obstructed bile duct. Her surgeon said, "we'll locate it, fix it and send you back home". Her blood work is perfect otherwise, heart rate and oxygen are all perfect. She feels good and is laughing and talking with all the hospital staff. Tumor marker shows no change. I'll let you guys know when the treatment plan is set up. And I thank each of you for your support and encouragement and helping me to stop freaking out.

Melissa

7

(13 replies, posted in General Discussion)

Deane,

I am so sorry for your loss. Your family is in our thoughts and prayers.

Melissa

My mom and I will be thinking of you tomorrow Kris. Here's sending you the best thoughts and prayers.

Melissa

Marion,

Thank you so much. I will keep you posted on what happens. It is such a comfort to talk with others who understand.

Hugs to you as well,
Melissa

10

(22 replies, posted in General Discussion)

Lainy & Marion, our appointment with the OC is set for Tuesday. Thank you both so much for your post. Your comments have helped to bring me out of the clouds. I don't usually panic, I am calm and rational but this symptom sent me into full panic mode. I didn't realize that the jaundice could be a result of something other than my worst fear. I thank you both for offering your support and words to help fear remain harnessed for the time being. I will keep you posted on the out come of our appointment.

Some back history, she was very very healthy before diagnosis in 2004 and in 2010 was walking between 5-7 miles a day and taking no medication for any other health issues. The worst issue she has had before the jaundice is the neuropathy in her legs from the chemo.

In the event of blockage or infection, can this be treated or relieved with medicine or will this be a hospital stay etc? (I am not asking you to diagnose or anything like that, just from you past experience, in what manner is it generally treated) Again, your words and support are so very helpful.

Melissa

Hello, I am new to the site but the daughter of a CC patient. First diagnosis was 2004, with liver resection and chemo. 2010 reoccurance, inoperable with cyber knife radiation and chemo of Gym/Cis, non active MRI to current. After my mom and I visited the other day I noticed yellowing of the skin and eyes, not alot but enough that I would notice. I've been reading alot of the post and I understand that everyone is different. I am nervous and have no idea what to expect now. I think I assumed that this would be a process of the cancer spreading etc, not liver function problems. Any words of advice would be much appreciated.