sara

Here’s my stab at it. I may have missed some threadsd that are needed. I just based this list off of the current structure, and adjusted accordingly:

General
o Introductions!
o General Discussion
o Thoughts for the Day

Experiences
o Surgery
o Chemotherapy
o Radiation
o Pain Management
o Alternative Treatments
o Nutrition
o Insurance
o Hospitals
 MD Anderson
 Mayo
 Sloan Kettering
 UCSF
 Leeds

Hi, infodude. I’m sad to hear that your brother is having to walk this road, but I’m glad that you came out of “guest” status.

Regarding your first question, please take the following with a huge grain of salt. I am not a doctor, and am just basing the following opinion on what I’ve read/heard with this cancer. I think you’ll be hard-pressed to find a surgeon that will operate with such a large tumor and bone metastasis. That’s not to say that if you ask enough surgeons, you won’t find one that will cut on the liver. Surgeons like to cut, so chances are that you can find one willing to cut. But your brother may wish to weigh the costs against the potential benefits. I don’t know if it’s extrehepatic or intrahepatic bile duct cancer, but neither surgical option is routine. Rather, the surgeries are quite extreme, and carry a degree of risk. At the same time, since the cancer has metastasized, it carries greater challenges as the surgery won’t address the metastasis, and the metastasis can just travel back to the resected liver and “reinfect it.” So, it’s possible that the surgical benefits may be small, and the chances of recurrence are large. That’s not to say that I would not investigate further – I would personally speak with several surgeons about whether or not to proceed with surgery. (and I would limit these discussions to surgeons that have regular experience with bile duct cancer – not surgeons that have only seen 1-2 cases in their career – this means go to the comprehensive cancer centers for 2nd/3rd/4th opinions)

I believe JeffG has had some good success with going after bone mets – hopefully he’ll stop by soon and offer some good advice on possible treatment options.

Regarding your second question – this one can be incredibly tricky and frustrating. Are you close with your brother? I am incredibly close to my sister, and would not have any issues with just asking her point-blank if I may bring her as much research that I can find. Maybe your relationship with your brother is the same? I might try that approach just to get a good feel for whether he is open to you forwarding him research. Regardless, I would try my best to respect your brother’s treatment decisions. Quite honestly, there is no “right” answer with cholangio – there’s not even a standard of care for treatment. So, whatever road your brother decides to take is the right one, even if he decides against taking it to the limit.

In this day and age, you would think that if you just go to the right hospital, and take an aggressive approach, you can beat this thing. But we’re still not there yet. God bless, I wish we were….

Kris – that’s a great question. We will try to get something set up that will help our “overseas” friends. Hopefully we can just record the entire call and slides, and post on the website so you can view at a normal hour.

All,

There is a U.S. non-profit that can provide assistance with medical bills. Currently, they do not have any of the hepatobiliary cancers listed as cancers that they service. However, I’m in the process of working with them to add bile duct cancer, as well as gall bladder and liver cancers to their list of cancers for support.

http://www.patientadvocate.org/index.php

You’re absolutely right – this is a huge failure of the U.S. medical system. There should be no reason that anyone should have to face daunting medical bills at such a difficult time in life.

My heart just breaks to hear these stories. Big hugs to everyone, and I’ll let you know if I make headway with this group on adding bile duct cancer to their list.

Kelly’s blog was removed. However, Kelly was my dear friend, and I know her treating oncologist and surgeon:

Oncologist: Dr. Robert Wolff
Surgeon: Dr. J. Nicolas Vauthey

They are both great doctors. Kelly particularly loved Dr. Vauthey’s sense of humor, as it is as witty and biting as Kelly’s sarcastic humor was, and Dr. Wolff was always so kind to Kelly.

Dr. Melanie Thomas was one of the go-to oncologists at MD Anderson for cholangiocarcinoma and HCC, but Dr. Thomas has recently moved to Hollings cancer center. I have an email to her for more details on who else to see at MD Anderson for cholangio.

Belle,

It can all vary depending upon the patient and their pain threshhold, but cholangio is actually one of the more painful cancers out there. I had a long discussion with some doctors and nurses at MD Anderson in Houston, and the bottom line is that it’s painful and often warrants very strong pain medication. I concur with Jeff’s suggestions 100% – I would get your sister into see a doctor and see what they can do for pain management, assuming your sister is experiencing pain. Additionally, regarding her dizziness, I would have the doctor evaluate that further. It could be something associated with the pain, as Jeff suggests. But it could also be something else.

Is your sister being treated by a cholangio specialist, or a local oncologist?

Dear Lisal,

My heart and prayers go out to you and your family. I am so thankful to hear that hospice was amazing and helped with this journey.

Big hugs,

Sara

Oh no – my thoughts and prayers are definitely heading her way. Thanks for posting this update, Kris.