Topic: Treating Cholangiocarcinoma-Mayo Clinic

http://www.youtube.com/watch?v=Ntn5UYrM … tube_gdata

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Re: Treating Cholangiocarcinoma-Mayo Clinic

It is so deja-vu to watch this, it has been 2 years since I heard those words from Dr. Chapman at Barnes-Jewish in St. Louis MO. At the time Barnes and Mayo in Rochester were the only ones with this clinical trial. At the time all my brushings were sent to Mayo for final diagnosis of cholangio.
Now that we are finally in recovery, we realize just how lucky we were. When I was diagnosed, being terminal wasn't discussed in any length, a liver transplant was going to save my life. My diagnosis was made with so much hope and positiveness, I only know now how lucky I was. It is still surreal to me that this disease has such a bad prognosis. I wish everyone could have this option. Cathy

Re: Treating Cholangiocarcinoma-Mayo Clinic

Cathy....earlier detection methods for this cancer may eventually lead to a higher rate of liver transplantations.  That is my hope. I share your joy in knowing that you have dodged this disease. 
Best wishes,
Marion

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

Re: Treating Cholangiocarcinoma-Mayo Clinic

Marion I did not dodge this disease, I survived this disease. I lived and breathed this disease for 2 years I almost lost my battle with it twice. I can finally believe I have a hope for a future. I will always have to worry about  not just reoccurence, but organ rejection. I am no longer in the "6-8 month category",  is the big difference. I have hope for a long future. Cathy

Re: Treating Cholangiocarcinoma-Mayo Clinic

Sorry Cathy....I did not mean to offend you rather, I expressed my joy of your "survival" in a rather awkward way.  Thanks for the correction.  On to a long future and many more of your inspiring postings. 
Best wishes,
Marion

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

Re: Treating Cholangiocarcinoma-Mayo Clinic

http://www.healthcanal.com/cancers/1290 … vival.html

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Treating Cholangiocarcinoma-Mayo Clinic

http://www.iewy.com/13285-solid-organ-t … creas.html

"Highlights from 2010 include:

* Mayo Clinic in Arizona is one of only a few medical centers in the U.S. to perform liver transplants as a way of treating a relatively rare bile duct cancer called Cholangiocarcinoma. The transplant procedure offers new hope and increased survival rates for patients with the disease."

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Treating Cholangiocarcinoma-Mayo Clinic

That is amazing, Gavin. We have never thought of Mayo here in Phoenix as really treating CC to the extent Rochester and MD Anderson have. They were never known for that before. That is good news.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Treating Cholangiocarcinoma-Mayo Clinic

When my daughter and I were originally looking for treatment centers for my husband, we specifically tried Mayo in Phoenix and we got a good response from them. Good news!

Re: Treating Cholangiocarcinoma-Mayo Clinic

Please don't forget Barnes-Jewish Hospital in St. Louis MO. They just openned a new cutting edge transplant floor. One of the main reasons is they are considerd a "cholangiocarcinoma center". They did both of my transplants and I will always be there number one fan. How do you ever say thank-you to someone who saved your life twice, I do by passing along my miracles because of them. Cathy

Re: Treating Cholangiocarcinoma-Mayo Clinic

My husband  was diagnosed 04/23/08 and will complete 1 year on the transplant list at The Methodist Hospital in Houston next month.  I am increasingly concerned that perhaps another center might be better suited given his current circumstances.  His meld score fluctuates dramatically - last month he was at 21, last week he was at 16, and today he is at 23.  He is also on coordinator #5, which I found out by accident and still have had no contact with because she is currently out.

Re: Treating Cholangiocarcinoma-Mayo Clinic

Mystar- I am a cc survivor because of a liver transplant. I was in the care of Dr. William Chapman at Barnes-Jewish Hospital. I was diagnosed July 31, 2008 and recieved my first transplant on May 24, 2009. I was put on the list on January 29, 2009. My MELD score only kept going up. My doctors had told me probably 4-5months for a liver and kept apologizing and reassuring me. that we would get one. I recieved 2 "fake liver calls" in that time. I was also B+ so that put me on another list. I was transplanted a second time on July 4, 2009 and a liver was found in 14 hours. (You can read my story at thetelegraph.com under christmas miracle.) I have had the most wonderful coordinator Pam Thurston since my diagnosis. MD Anderson is on the same page as the Mayo Clinic and Barnes. I am alive only because God put me in the hand of the most amazing hospital and Dr. Chapman and staff. Please feel free to e-mail me at jrdunnagan@gmail.com or call at 618-567-3247 if you would like to talk. Lots of prayers-Cathy (Pam called today to say my 6 month cat scan and MRI were good!)

Re: Treating Cholangiocarcinoma-Mayo Clinic

Mystar.....I would like to follow Cathy and welcome you to our site.  Like you I wonder why the coordinator has not been in touch with you.  One would assume for another person to step in during her absence.  I would make some inquiries.
I am glad that you have found us and please, stay in touch.
All my best wishes,
Marion

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

Re: Treating Cholangiocarcinoma-Mayo Clinic

Thank you Cathy and Marion for the Welcome,    Yes, Marion the old coordinator was kind enough to confirm that the Meld score was 23 and update the "list" and cc the new coordinator.  The thing that she couldn't do was tell me that the CT Scans that were done on 12/08/10, would finally get reviewed at their weekly radiology session, but that I should go ahead with scheduling an appointment with the doctor for Jan. 31st. anyway  since he only has clinic on Mondays and he would not be in at least 2 of the following 3 Mondays.  Tell me this craziness is not normal.   Today I requested that the local oncologist refer him to Baylor for a conference and to consider moving his listing if they would even accept him.

Re: Treating Cholangiocarcinoma-Mayo Clinic

Mystar....seems as if you are working yourself through some of the craziness associated with the world of Cholangiocarcinoma.  I suppose it comes with the territory forcing us to be prepared for just about anything.  Good luck on referral.  The one thing I have learned is to be consistently persistent.  Seems that that is what you are doing also.
Best wishes and please, keep us posted.
Marion

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

Re: Treating Cholangiocarcinoma-Mayo Clinic

When I first posted on this sight I was at my wits end.  I was able to schedule my husband for an evaluation on Monday, Feb. 7th. at the Baylor University in Dallas.  I thought a second listing would better his odds.  Instead he was admitted to local hospital and by Wednesday the 9th, his MELD was up to 36.  At that point Baylor doctors thought that  with his unique challenges he would not likely be put on their list.  Just when I was wondering what now, Methodist called and transferred him to Houston where he is now near the top of their list.  Once he is stable, he will be discharged and we will stay in Houston.  Talk about the craziness????

Re: Treating Cholangiocarcinoma-Mayo Clinic

Las time I posted I thought the miracle we were waiting for had arrived.  We were told to come to Houston with a MELD of 37. We have been here over 2 months now. The hepatologist was so good at treating the liver problems that my husbands MELD score is again going downward. Does anyone know what the rules are for MELD scores for patients with liver cancer.  I was told that the starting point is set at 22 and then increased every 3 mos.  ????

Re: Treating Cholangiocarcinoma-Mayo Clinic

Mystar...This is what I have learned:

The MODEL FOR END-STAGE LIVER DISEASE (MELD) is implemented in order to prioritize patients awaiting a liver transplant.  It ranges from 6 (less ill) to 40 (gravely ill.) This scoring system determines the urgency of a transplant. 

Lab values used in the MELD calculations:

1.  Bilirubin   measures how well the liver excretes bile

2.  INR :  measures the blood clotting ability of the liver

3.  Cratinine:  measusres kidney function.  Why Creatinine?  Often times kidney function is associated with severe liver disease. 

The four MELD levels are:

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