1 (edited by infodude Thu, 24 Jul 2008 20:33:31)

Topic: Hi friends

Hi Friends,
I say friends even though this is my introductory post.  I have been on this site often since my brother/bestfriend was diagnosed with this terrible disease in May.  Many times if you looked at the bottom of the discussion boards and there was a guest visiting it was me.  This site is truly a Godsend.  I would love to tell you the whole story; who we are, where we are, who we

2 (edited by tiapatty Fri, 25 Jul 2008 10:15:34)

Re: Hi friends

Sorry, infodude, I have no idea about question #1 but if he is not a candidate for resection, you should take a look at the article in the Medical Updates section on photodynamic therapy (PDT), which the article says is accepted treatment in Europe:

http://www.eurekalert.org/pub_releases/ … 041508.php

If you put PDT in the search box, you can find more info.

As a librarian, I am going to suggest you try bibliotherapy for question #2. What is bibliotherapy you ask? Books, books, books--"the basic concept behind bibliotherapy is that reading is a healing experience," see the rest of the definition here:

http://en.wikipedia.org/wiki/Bibliotherapy

While mainly used for mental health issues, I think it can help a patient combat any disease. You can get your brother books written by cancer survivors, books on how to attack cancer, fiction that helps him escape what he is going through, cancer cookbooks, etc. You can start a 2-man book club with him and read the books together. I did a quick search and have a few recommendations for you:

When Life Becomes Precious: The Essential Guide for Patients, Loved Ones, and Friends of Those Facing Serious Illnesses, by Elise Babcock

Help Me Live: 20 Things People with Cancer Want You to Know, by Lori Hope

Cancer: 50 Essential Things to Do, by Greg Anderson

One Bite at a Time: Nourishing Recipes for Cancer Survivors and Their Friends, by Rebecca Katz

I just got an idea, I am going to start working on a bibliography of helpful books and post it. Unless there is already something like that and I haven't found it here yet?

good luck,

Librarian Patty

Re: Hi friends

You may have seen my posting, but my Husband Butch just had a liver resection at UPMC - had 3/4 of his liver removed. The surgeon was Dr. Gamblin, assisted by Dr. Marsh. We went to Mayo, but they did a laproscopy and found lymph node involvement in the diaphragm area. They stopped the operation, and when we got home , I wrote to other places. UPMC responded, and they have done the operation. So - your family should write them a letter - they will ask for copies of the reports, scans, etc. They won't know until they try. I did tell Dr. Gamlin last week that I would be telling people on this website about him, so it is fine to tell him that you saw it here!

Joyce C.

4 (edited by marions Fri, 25 Jul 2008 22:17:48)

Re: Hi friends

Hello Friend,  So nice to connect with the

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Hi friends

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....

30-something caregiver