Topic: Tegretol Connection?

I am wondering if anyone knows or has heard of a connection between cholangiocarcinoma and Tegretol use.  My daughter was diagnosed last year with CC at 29 years old and when she was 9 she had a seizure disorder which was treated until she turned 14 with the anti-seizure medication Tegretol.
Since this all began, she has been searching for the answer to "why" as she realized that this is both a rare cancer and one that is unusual in young people.  She came across an article which hypothesized a connection between Tegretol and the development of CC.  Is anyone familiar with this?

Thanks,

January

Re: Tegretol Connection?

January, I am familiar with Tegretol as my son was on it for about 25 years. He has no stomach problems and yet his son has Crones and I have Ulcerative Colitis. I don't think I have heard, on this Board anyway, of CC being connected yet to any drugs. We just don't know yet. We have more than suspicions about Environment and a parasite called Liver Flukes that is predominant in Asian Countries in a fish that is considered a delicacy. Look up Liver Flukes...quite interesting. I know my husband who was Sicilian would eat any fish and he served in Korea for 2 years. I also know that younger people today devour Sushi and we really don't know where it all comes from. I bought a pack of whitefish not too long ago and brought it home and then read that it came from Thailand. I dumped it! The good news is we are having more research done on CC than before and they have been coming out with new treatments and trials. So there is more hope than before. One more thing, it appears that many of our members are from Coastal states  more than mid America and I find that interesting!

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: Tegretol Connection?

Hi January,

My Lauren also had seizures (febrile) which were caused by high fevers when she was a toddler. She outgrew them by age 5, but was on medication for those years. She was on phenobarbital, not Tegretol. You may be on to something because it sounds very similar. My daughter was diagnosed with cc at age 25.

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Tegretol Connection?

Dear Pam,

That is interesting-  we mentioned the article to Lauren's oncologist yesterday and she said she is aware of the research.  I remember she needed to have monthly liver function tests while on the medication.  I wonder.

January

Re: Tegretol Connection?

Dear Lainy,

I have heard about the suspicions about fish- and yes, Lauren loves sushi and has for years.  Everything is feeling kind of suspicious to me about know.

Thanks for your thoughts,

January

Re: Tegretol Connection?

Hi,
I know taking  Dilantin is a risk factor.
Dilantin is used to treat seizure too  ( ie: idiopathic seizure )

God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Tegretol Connection?

Hi January,

Do you happen to have a title for the article or link to the abstract please?

I'm also interested in a possible connection.

Thank you,

Genevieve

Re: Tegretol Connection?

Hi
I believe Dilantin was in Dr Patel article
In the reference articles, the first one

http://www.cholangiocarcinoma.org/punbb … 121#p57121

God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Tegretol Connection?

Thanks Percy,

God bless you too.

Genevieve