1

(12 replies, posted in Good News / What's Working)

Karen,
My girlfriend who passed on 11/16/07 went to several hospitals in the
Camden/Philly area.  The experience found Dr. Alfant in Cooper to be
excellant in stent placement through ERCP, and percutaneous procedures
Julio C. Otazo, M.D. was great in setting up her drain ports
and had a compassionate caring and positive bed sid manner.
Over at HUP Dr. Drebin is a star at removing these types of tumors,
but sadly her disease had been too far progressed for resection.
She was diagnosed in July.
My prayers are with you as your husband battles this insidious disease.

2

(4 replies, posted in In Remembrance)

Yesterday morning at 8:30AM my beautifull Angel, Lee entered into the next life after only a 4 1/2 month battle
with this cruel and insidious disease.  As any of us that have had to deal with the grim realities of this terrible
cancer know that the quality of life diminishes so dramatically once the tumors have progressed.  She was
alert, caring toward those who loved her and positive right up to her last breath.  She never showed anger
or resentment about her situation, didn't expect pity and was cognizant of everyone's feelings as she
gave a masterfull discourse on courage, class, and dignity.
I will miss her beauty, style and elegance. She had been an accomplished dancer so the subtle grace of her
every movement will be forever etched in my mind.
There will be a memorial service for her tomorrow where she will be laid out on the farm she loved in a meadow
with a natural four poster bed that is being built as we speak.  This was her wish and it is a further testominal
to her natural spirit, whose purity couldn't help but be attractive to everyone that knew and loved her.
I don't know why God chose to bring her home now, but I do know that in the short time that I got to know
her and love her that now I have a greater understanding of what that heaven that she is in, looks and feels
like.

3

(2 replies, posted in Websites)

Stacie, thank you for sharing this.  As my friend is nearing the end
of her battle with CC it puts everything in perspecive.

4

(4 replies, posted in Pain Management)

My girlfriend dx'd with Klatskin tumor early in July is now receiving
external radiation treatment, and has had about twenty treatments.
After about the second week she started to have pain in the upper
GI areas just below the esophogus.  I read that this happens to patients
and should go away a few weeks after the radiation treatments end.
The problem is that this keeps her from eating.  She is down to 107lbs
from 137, when this nightmare all started.
She is taking marinol to try to enhance her appetite, but that gives her a
headache. She tries Xantac for the heartburn like pain.
I have read about cachexia and the way that  the tumor becomes nourished
instead of the nutrients going through the blood to the organs, tissue,
muscle and bones.  Anyone with any suggestions on how she can
at least maintain some weight without feeling this pain?  She is
wasting away.
Her oncologists were trying to get her to go on an oral chemo regimen,
but she trurned it down.  She has been washing down extra strength
tylenol with her protein shakes.  Solid food does not cause her nausea,
but pain.
I check this site several times a day and there is a lot of good infromation
being shared by all of us dealing with this cruel, insidious disease.

5

(4 replies, posted in Introductions!)

My girlfriend who is 68 but looks 49 was admitted to the  hospital
on July 3rd with jaundice and itching.  She thought
that it could be hepatitis, but MRI's indicated a bile duct
mass.  When I did a google search cholangiocarcinoma was
the first thing that came up, and as most of you already know
it has been like a surreal nightmare ever since.
She lives on the Jersey shore and with all due respect the
hospital she went to and the people that saw her screwed around
for about a week before thaey attempted to do a stent, then another two weeks before she was referrred to
Cooper Hospital in Camden.  They attempted several
other procedures to get her drained of the bilirubin and last
week-end discharged her telling her friends and family that
she was unresectable and had 2 or three months to live.
After two days at home she became dehydrated and sick and
went back to the Shore Regional at which time
she was transferred to the University of Pennsylvania Hospital in
Philadelphia, which is her home town.
What a difference in attitude and care.  This insidious dreaded
disease is so rare that not that many people are willing to make
any kind of positive commitment and diagnosis.
Saturday Dr. Jeffrey Drebin came in and said that there is
a possibility that this Klatskin tumor can be resectred if
one of the lobes is clear and it appears that the tumor is  growing
down (sometimes that turn around and grow up) and if there is
any way possible he will have it removed.
I think there is only probably 20 surgeons that would do this
operation of which 10 are probably excellant.  What a difference
by going accross the Delaware River.  From the Grim Reaper to
Cautious Optimism.  Always get second opininions.  Don't
hope for miracles expect them.