From: Edward Cwynar <edcwynar@email.msn.com>
To: vianet@i-2000.com <vianet@i-2000.com>
Subject: Anna's Leiomyosarcoma
Date: Sunday, March 22, 1998 2:36 PM

Dear Kent,

I was so amazed when I found your website. I found another
gentleman named Darrel Kilius; but, he never responded. I hope he's ok.
Well I'm writing in responce to my sister Anna whom has also been diagnosed
with leio. Her's started with a fullness near her ribcage and alot of
discomfort. We kept telling her it was just indigestion or weight since she
had gained about 15 or 20 extra pounds. this was in Jan of 97. She finally
went to her Dr. and told him of her discomfort. He put her on some
medication, told her if she didn't feel better in 2 to 3 weeks to come back.
The pain intensified so she went back. He ordered some x rays: and said, "I
want you to see a surgeon. The following day she went to see this surgeon,
he did a CT scan. The scan showed some spots on her liver. The surgeon
said there was nothing to worry about, she'd probably had them since birth;
but, he'd watch them every 6 months. I was very upset with his diagnosis
because I have had some liver abnormalities and have read all the literature
on liver functions. I told her to please get a second opinion. Well, she
didn't, and only waited 3 months. Then went back to the surgeon. Well guess
what? The spots had grown much larger. Now he was saying, "she needed a
liver biopsey." The biopsey showed cancer. Needless to say he had egg all
over his face! He sent her to a liver specalist, who in return sent her to
another surgeon. This surgeon did all kinds of tests. CT scans, MRI's
another liver biopsey, which are very dangerous. Finally all the results
were in she had Leio. The surgeon said, "she needed to get her life in
order, she was going to die!" He also said, the original site was in her
duodeum and it had spread to her liver. She had two large tumors, and
there was no chemo or radiation for this particular rare cancer and sent her
home. You can imagine the deviestation, Anna was only 52. The next day
she received a phone call from another Dr. at Emory University in Atlanta,
Ga. He asked her if she could come in, he had read her reports and felt he
could help her. The next couple of days were hectic, he told her he had
done many surgeries on this paticular disease with all good outcomes. He
scheduled her first surgery to remove the tumor in the Duodem (don't know if
i'm spelling that right) in July. Thank God, it was successfull. The
cancer had not penetrated any of the walls and was contained. I believe
they call it "insitu." meaning ( in one area ). The second surgery was to
be in six weeks. This procedure was alot more dangerous. He was going to
have to cut out the whole right lobe of her liver. This procedure was
called a "roof top cut." He would cut from under one arm pit to the other
(only one other time in his medical career had he done this). She had her
surgery in Sept., and was in intensive care for 3 days, and did great! The
Dr. said she was a marvel! He had never seen anyone in his career with
such optimisium and sense of humor. I'm sorry I've made this story so
long, but Anna doesn't have a computer and has had vertually no one to talk
to that has had this dreaded disease. She had another minor surgery in
Dec., but thank God it was only a polup in her rectum, not leio. She is now
cancer free the surgeon tells her. She has had her 6 month CT scan and her
blood work and all is well. We don't fool ourselves we know this can
reoccur, but she lives every day to it's fullest. She is having alot of
problems with her hormones, and alot of gastro problems. I sent her the
supplement list you had on your web site. How can we E mail other Leio
people? Do you know of any other Dr's. in the US that specialize in LEIO?
Thank you for your story and I hope you are doing great at this writing.
You and your wife are an inspiration for all the Leio people. Let's hope
this disease is curable for everyone in the future. Do you know of any
funding that is available or being set up for LEIO? Thank you so very much.
Please E MAIL me back at you're convenience.

Sincerely, Issy Cwynar,
Ringgold, Ga.