Topic: My Experience

Hi
I was diagnosed with Cholangiocarcinoma in September of 2005. I was 46 at the time but had my 47th birthday on December 30th, 2005. I had been going to the Mayo Clinic in Rochester, MN for the last twenty six years for Ulcerative Colitis. This turned out to be a blessing because my doctor caught my present cancer during my yearly exam. He said it my have been a year or so before I would have noticed any symtoms from the tumor in my bile duct. The doctors found PSC of the bile ducts whice is probably associated with the many years of having colitis. I have had three weeks of radiation along with chemo. This was followed by brachytherapy (internal radiation to the cancer site) and a staging surgery to determine if the cancer was contained in the duct area or if it had spread to other areas. The results of the surgery were what we had been praying for the cancer is contained to the upper duct area. With these test results I am now eligible for a liver transplant. While waiting for a liver I must take chemo (Xeloda) two weeks on, one week off, this is taken by pill so it is much easier tham by IV. I go back Feb. 7th for a CT scan and other test to make sure the chemo is keeping the cancer in check. I thank God my doctor caught this cancer early or a transplant would not even be an option.

Thanks for starting this web site and I hope things are going well for you!
God Bless

Re: My Experience

My mother is 62.  She was diagnosed in May 05.  Had 1/3 of her liver removed.  The cancer was removed or so they thought.  Went through a round of Radiation.  Had been on Xeloda until Dec 21 05.  Had scans done in Nov 05 now has three spots in liver.   She is suppose to be starting Xeloda again on Jan 23 06.  1 week on 1 week off.

I am having Cancer Treatment Centers of America see her this Wednesday.  All they could say about her taking just the Xeolda is "OH MY".  They have also said that "Mayo Clinic" had misdiagnosed and mistreated Walter Payton who had Cholangio Carcinoma.  They received him as a patient late in his treatment.  They also stated that have put people in remission with this type of cancer.

I will let you know what they say about my mom.

Re: My Experience

If you could, ask them what should be done in addition to taking xeloda as far as a treatment. What will be the results of this treatment method.

What were the details of Walter Payton being misdiagnosed? What did Mayo treat him for if not cholangiocarcinoma?

Hope they can help your mother...let me know how it works out

Thank You and God Bless

Re: My Experience

favia,

how is your mother doing? - how did you get on at cancer treatment centers of america? - i am sorry that your mother's cancer has returned i hope that you have been able to get some treatment for her to help.  Please let me know how you are getting on.

best wishes

Jules

Re: My Experience

It's been four months since my staging surgery. I have been up and down on the transplant list currently at number one at Mayo MN. The doctors have decided to go  with a living donor and are currently organizing two surgical teams for my transplant. My donor is going to be my wife!!!! We both have the same blood type (B+) and she has been through all the testing and is in great health. They will remove about 70% of her liver and give it to me. She is so excited that she can be my path to better health...I Love her so much. Please keep us in your prayers. Hope great things have been happening to all of you!!!!

God Bless,
mnauss

Re: My Experience

Good Luck mnauss! I had my transplant at Mayo in Rochester on November 16, 2005. I'm feeling fine now, but my latest CT scan in March showed a 2 cm mass between the liver and the stomach, snuggled up next to the portal vein. The doctors want me to wait two to three months and return for another round of CT scan, ultrasound, and bone scan plus the blood draw to see if they can detemine what's going on with my high CA 19-9 score of 7400+. They think the cancer may have spread but need a biopsy to confirm it. They were unable to biopsy the mass in March. We'll return June 12th. We live in Olympia, WA so it isn't easy to travel back and forth a lot. We fly when it's a short stay, otherwise we've taken our motor home and stayed for two months at a time.

Congratulations on having your wife be compatible with you so that she can share her liver. Our daughter gave me her right lobe, she kept her left lobe and some of the bile ducts. My liver is doing well and the bile ducts are too.

Mayo is an amazing place and I'm glad we were directed there by the doctors in Seattle. You're in excellent hands there, the doctors and staff are so caring it is very comforting.

Let us know when you get the transplant scheduled. Maybe we'll be there when the big day arrives and we could meet each other.

KathyJ

7 (edited by mnauss Thu, 20 Apr 2006 12:45:17)

Re: My Experience

Hi Kathy,

I had my transplant on March 20th. A liver became available while we were waiting for our surgeries to be scheduled. Mayo had told us that if a deceased liver became available that they would go that route because there  is less chance of complications. I was released from the hospital March 29th and stayed at the transplant house for about two weeks. Things were looking very good so we were given the go ahead to go home on April 11th.

Did you ever tour the transplant house? It is a very nice facility, we had the chance to meet some very nice people. It was helpful to hear all their great stories and the miricles that take place each day at Mayo. Not all the people had stories of success but it was also an inspiration to see how positive these people were and how they were making the best of a not so good sitituation.

We will return to Mayo June 19th and the third week in July. If you happen to be there at these times maybe we could have lunch or just a cup of coffee. That would be nice.

mnauss533@hotmail.com

Re: My Experience

It's been two and a half years since my transplant and things have been going great. I pray that everyone can keep the faith and have the success they are hoping for. Cholangiocarcinoma is a tough one. I pray that medical research will advance quickly so more people can experience cures for a longer life with their loved ones.
Keep the Faith,
mnauss

Re: My Experience

mnauss,

Thanks for sharing. It is good to hear that there are some success stories out there concerning this terrible disease. You are one of the lucky ones.  Glad you are doing well. As this disease becomes better known, hopefully more will be diagnosised early enough to be helped successfully as you were. 

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: My Experience

mnauss,
Praise the Lord!  I am so happy for you to be 2-1/2 years past your transplant.  When I first starting reading the top of the page I was afraid I would come across that you had passed since the listing date was so far back.  You are truly an inspiration and encouragement for people suffering CC that can have a transplant.  Thank you for sharing. 
Karen

Wishing all God's blessings!