[MOL] My friend needs information [03418] Medicine On Line

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[MOL] My friend needs information

Hello My Dear Friends of the MOL Forum:

I'm in need of help for my Friend Kathy and her husband Will.
Kathy & Will's story is below. 
If you can help her please send any information directly to her email

Thank you so much I appreciate all the help you can give.
Love PJ:  read on for Kathy's story to me:

In '93 Will got very ill and the doctors took a long time trying to figure out
the problem.
He waited almost 2 years for a new liver and in the fall of '94 his life was
saved by a liver transplant.  According to his family he had less than a week
to live at that time.
The biopsy showed Epithelioid Hemangioendothelioma.
The operation had complications.  (lungs collapsed, induced coma, etc.)
At that time it was discovered that the same cells were in his lungs and "hot
spots" on his ribs.  Scans and other tests showed no movement.
So since there was no spreading apparent he concentrated on getting stronger
and returning to work after a 2 year LOA.
We met in the summer of '95.  
I was going through the hardest emotional time for various reasons and he had
the physical problems at his end.  (We have all bases covered between us.)  I
knew from the day I met him that his life span was/is shorter than the "norm".
(he is also diabetic...since age 12) Even though I knew this, it didn't stop
me from falling in love with him and his optimistic spirit immediately.  We
married a year later.  He kept getting stronger and my "head condition" has
been better dealt with through counseling.  Now, last summer, the bad news.
The same cells are now showing up on his new liver.  (4 years + now.)
He also had pain in his arm and they removed a mass.  It was said to be scar
tissue from all the scans and tests on it....but upon biopsy it has shown to
be the same cell they compared to the liver slides.
He is back to work full-time now and no one who didn't know could ever think
he was sick by looking at him.
We are in Hartford, Connecticut.
The doctors say 500 to 1000 people in the US have this type.  He tried the
drug thalidomide....he got too sick from it and stopped.  The spots are
getting larger.  One of our biggest concerns is our doctor isn't in touch with
any other doctors treating this exact same cancer cell.  Do you or your
Internet friends have anyway of finding those 500 people afflicted with the
same type?  Thanks in advance for anything you can do, PJ.    Feel free to
copy and send all or parts of what I have written to anyone you can think of.
The more people who know we need help, the better in my opinion.  (Maybe Will
does not share this thinking, but I'm assuming I will never have to give our
exact address or last name.....)
Kathy.....Will's wife....age 34.  (no children....we decided life was going to
be tricky enough for us without adding to the recipe of our life.)

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