RE: What I learned at the conference

[Guest guest]

I found

it interesting that Dr. Gores spoke of the CA 19 markers being elevated within

the first couple of years of diagnosis were more of a concern. He also

said that the chances of developing cholangiocarcinoma with long term PSC were

rare. I had always thought the risk was greater the longer you had PSC,

but not according to Dr. Gores. That was a very positive bit of

information I learned. It would be interesting to take a poll of those in

the group that have had the unfortunate diagnosis of cholangiocarcinoma how

soon after their PSC diagnosis was it found.

Together in the Fight, Whatever it Takes!

Joanne (mom of Todd, 22, PSC 01, Crohns

02, TX Twice 03, rPSC 05, Diabetes 06, AIH Overlap and living life to the

fullest 08)

Lee wrote:

4} I was able to speak with Dr. Gores about the CA 19

since Bills had been 143 and the 153 for his last two blood test. Dr. Gores had

said that

anything above 100 was

cause for concern and so I approached him after his talk. He said

that he would be much more concerned if he were newly diagnosed but after the first 3 or 4 years post diagnosis

if this level doesn't vary much then just having an MRI once a year is enough

to watch the trend along

with the blood work. He said that CA 19 can vary as much as 20 or 30 points per day so

Bill's is essentially the same at 143 and 153.

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[Guest guest]

>

> [Dr. Gores] also said that the chances of developing

> cholangiocarcinoma with long term PSC were rare.

Dr. Gores' statement jibes with at least one recent study. " The

annual incidence rate of cholangiocarcinoma in primary sclerosing

cholangitis treated with ursodeoxycholic acid is lower than expected

and decreases with time of treatment. "

http://www.ncbi.nlm.nih.gov/pubmed/17489059

[Guest guest]

>

> [Dr. Gores] also said that the chances of developing

> cholangiocarcinoma with long term PSC were rare.

Dr. Gores' statement jibes with at least one recent study. " The

annual incidence rate of cholangiocarcinoma in primary sclerosing

cholangitis treated with ursodeoxycholic acid is lower than expected

and decreases with time of treatment. "

http://www.ncbi.nlm.nih.gov/pubmed/17489059

[Guest guest]

>

> [Dr. Gores] also said that the chances of developing

> cholangiocarcinoma with long term PSC were rare.

Dr. Gores' statement jibes with at least one recent study. " The

annual incidence rate of cholangiocarcinoma in primary sclerosing

cholangitis treated with ursodeoxycholic acid is lower than expected

and decreases with time of treatment. "

http://www.ncbi.nlm.nih.gov/pubmed/17489059