lisa

Darla,
I think that you just had a fantastic idea that would help raise awareness for our disease. The theory that Vietnam Vets like your husband are coming down with cc from liver flukes that could have been picked up in the war should be publicized. These men should be screened regularly as you suggested.

You have my permission to use my information. And thanks for your great efforts.

Raising awareness is a crucial element to finding a cure. That’s what the whole advocacy/awareness/political campaign about breast cancer is all about. Twenty years ago people got busy about breast cancer awareness, and lo and behold, research dollars started pouring in.

Of course, the fact that breast cancer is one of the most common cancers really helps the awareness factor… that is why it is so important to raise awareness of rare and deadly cancers like cholangiocarcinoma. We tend to get ignorned.

Hi Gale,
Thanks for stopping by! I’m wondering about the IVC thing, too. My tumor is wrapped around the IVC, and for that reason they stopped trying to resect the tumor. How were they able to do a resection on you with the IVC involved? And like Jeff asked, where was your surgery done and who was your surgeon? I’d like to contact him or her to get a 2nd opinion on my case.

Thanks,
Lisa

Thank you for the information, Carol.

I’m going to ask my son and daughter to ask about reduced tuition at our local community college.

The information about the hospital fees is invaluable. I wasn’t aware of that program until I had paid out a bunch of money. Later, our cancer care center’s social worker told me about it.

Suzanne,
Your doctor’s recommendations sound like a good plan. You may be one of the lucky ones that have an immediate, positive response to the tumors. Just expect to be tired all the time as a result of the treatment. You’re moving into a place where you have to redefine “normal”.

“Normal” is not what you used to be able to do before you were sick. “Normal” is now dealing with cancer, and still living your life to it’s fullest, realizing that you have challenges you never thought or dreamed you’d have before.

All the literature says that for now, surgery is the only cure for cc.

Many, if not most of us on this board have not been able to have surgery, or have had unsuccessful attempts at resection.

However, some of us have had a good response to chemo/radiation therapy.

This type of cancer really attacks people in different ways. Some people succumb within months of diagnosis, while others of us last years. You just don’t know. I am one of the fortunate ones. My Gemzar/Xeloda regimen has been successful at shrinking the tumor and preventing metanasties. We will continue with this until it is no longer effective, then try something new.

I hope and pray that I, and the others with this terrible disease, can hang in there until a cure or more effective treatments can conquer this disease.

Kris, let me know what she says as well. I’m curious as to who she would recommend.

When I was in the hospital, we found out that I had an allergic reaction to the anti-biotics sulfa and something else. I was covered with hives, also.