dukenukem

Many of the latest information seems to be coming from China. Is that because of the liver fluke influence?

First thing: Check the heel of your right foot. Is there an expiration date stamped there? If not, wrap that “12 month” stuff in a pretty box and return to sender.

I was diagnosed about a year before you. My onc told me if I didn’t have chemo I had six months. I’ve been on chemo since and my main tumor in the liver dropped from 19 cm to 10 cm. Mets to lungs and lymph nodes are pretty much unchanged. I feel it’s time to go on the offensive and am getting a second opinion on treatments from Dr. Steven Alberts at the Mayo Clinic. Cis/carbo seems to be a first choice for initial treatment for 8-12 rounds. Ask what your onc thinks about getting genome testing from someplace like FoundationOne (not an advertisement or endorsement – sample has not yet been sent). My onc brought that up last week, after 14 months of treatment. Push your onc on how many CCA patients they are treating and who they are using for peer reviewers. It is your right to get the best treatment you can.

Everybody IS different. But, as Lainy said, Attitude is everything. That will get you through the fears in the middle of the night. Get yourself a strong support group. Surround yourself with positive people. (You can’t go wrong starting with this site.) Realize that there will be clueless people who don’t know what to say, and will generally say the wrong thing. Forgive them and forget them. Avoid them if possible.

When talking with your doctors, make sure you fully understand what they are saying. It’s your life. You can’t drive the train but you sure as hell can ring the bell. Be a participant, not a passenger.

I’m outspoken and a bit of a militant, so take what I say with a grain of salt. I’ve got “Palliative Care stamped on my folder, too. I feel like going there one day with a magic marker, crossing that out and writing “Imaginative Care”.

Wishing we share many future July anniversaries,
Duke

Cut and paste from the Abstract:

Abstract and Aims
It has been reported that the incidence of intrahepatic cholangiocarcinoma (ICC) has increased in the USA, while extrahepatic cholangiocarcinoma (ECC) has decreased or remained stable. However, neither the recent trends nor the effects of the misclassification of Klatskin tumors are known.

Conclusions
The incidence of ICC has remained stable between 1992 and 2007 with only slight fluctuations, while the incidence of ECC has been increasing. Misclassification of Klatskin tumors does not appear to play a significant role in the trends of CCs.

Question from me:
What is being done to determine why ECC is increasing?

Duke

The greatest news from you and Randi. For you this must be like birthday, anniversary, and Christmas rolled into one! Many happy returns.

Duke

I believe lisacraine has had more than one resection. There may be others.

What a bizarre disease this is when we hope for it to “only” an infection.

Pat –

There’s a Sticky under “Good News” that collects milestones. Some have reported even longer survivals than yours. They may be able to provide their plans.

Duke