Re: Joe/Chris W.

[Guest guest]

Dear

I'm sorry to hear this news. I would second everyone's opinion on

Mayo, and add this:

Mayo, Rochester has a specific exception from UNOS to do an

experimental protocol to treat CCAs smaller than a certain size with

chemotherapy, followed by transplant. Our member Mark was treated this

way. Their results are quite good, and they report that the 5 year

survival rate for their treatment is little worse (88%) than that

expected for LTx without cancer. The transplant can be done at another

Mayo location such as ville FL or sdale AZ. Other centers

are, unless something has changed recently, NOT allowed to do

transplant for this purpose. I have heard that U Nebraska in Omaha has

a similar protocol, but don't know more than that. Dr Gores and his

colleagues are the ones who publish on this topic.

I would immediately call and send the records to Dr. Gores at Mayo

Rochester. If there is anything to be done, he can do it. Are you

absolutely sure about the diagnosis? As Arne said, it is amazing

coincidence that they saw the CCA. Note that most CCAs occur in the

EXTRA-hepatic ducts, but the liver biopsy looks at intrahepatic ducts.

If it is hepatocellular carcinoma, that is a different animal, which

is intrahepatic, less aggressive, and already approved for transplants

at other centers.

My thoughts are with you as you work through this difficult time. I've

been offline for some weeks due to my mother's illness and am just

catching up on the posts.

Martha (MA)

> >

> > Dear Friends,

> >

> > Joe received the results of his liver biopsy today. He has

> cholangiocarcinoma.

> >

>

[Guest guest]

Hi,

I will have to chime in on getting an opinion from Dr.

Gores at the Mayo in Rochester MN....I am currenty and

have been his patient for 3 years. I live in

Fredericksburg Virginia and I made the life saving

trip to the Mayo 3 years ago for cholangiocarcinoma in

the bile duct outside the liver.

The 4 or 5 doctors that had seen me couldn't diagnose

that there was a tumor in the bile duct causing a

blockage which they kept stenting over 12 times in 6

months. The ERCP biopsies kept coming back that there

was no malignancy or tumor. Well, long story

short.... surgery to remove the tumor in the bile duct

which had also invaded the pancreas, chemo and

radiation...I go back every year now for checkups with

Dr. Gores. I have PSC which is asymptomatic but if I

do need a transplant down the road I will have to go

to the Mayo. since having the CC. I would no doubt get

his opinion, I am alive today because of him...Good

luck with everything and ask all the questions you

can, you will get an answer here on this site.

Liz in Fredericksburg, VA

__________________________________________________

[Guest guest]

Thank you, Liz,

I am so glad that you are doing better. It would be my choice for Joe to go to Mayo, but he has chosen MD for now.

Chris

Re: Re: Joe/W.

Hi,I will have to chime in on getting an opinion from Dr.Gores at the Mayo in Rochester MN....I am currenty andhave been his patient for 3 years. I live inFredericksburg Virginia and I made the life savingtrip to the Mayo 3 years ago for cholangiocarcinoma inthe bile duct outside the liver.The 4 or 5 doctors that had seen me couldn't diagnosethat there was a tumor in the bile duct causing ablockage which they kept stenting over 12 times in 6months. The ERCP biopsies kept coming back that therewas no malignancy or tumor. Well, long storyshort.... surgery to remove the tumor in the bile ductwhich had also invaded the pancreas, chemo andradiation...I go back every year now for checkups withDr. Gores. I have PSC which is asymptomatic but if Ido need a transplant down the road I will have to goto the Mayo. since having the CC. I would no doubt gethis opinion, I am alive today because of him...Goodluck with everything and ask all the questions youcan, you will get an answer here on this site.Liz in Fredericksburg, VA__________________________________________________