From: sean <ookladog@email.msn.com>
To: cancer@via-media.com <cancer@via-media.com>
Subject: uterine leiomyo since 3/94--3 recur
Date: Saturday, July 25, 1998 6:04 AM

Dear Kent,
Heartfelt thanks for this website. I'm a 52 yr old female, 1 son, and I'm
needing to take some new action against ole leio soon. Here's my experience
starting in 1994:
After having 2 weird periods, and then some severe abdominal pain,
my gyn advised that my "fibroids" had grown quickly, and I needed a complete
hysterectomy immediately. I won't give all the details about how I lost
about 3 months trying to get him to agree with--if at all possible (thinking
they were just fibroids)--saving me one ovary. He tersely let me know that
he only saved the ovaries of 29 year olds and that was that. (A biopsy at
that 1st exam had come back normal.) The tumors grew bigger, quickly, and I
was beginning to be unhappy that I had picked HMO for my insurance. By
late March 94 my doctor
advised that a gyn-oncologist should assist in the surgery, and leio was
found and told to me on 4/1/94! Panicked and alone, I felt pressured by my
HMO doctors to do radiation (5 wks of 5 days/week). I took my reports and
scans to Loyola Univ. in Chicago
where they confirmed leiomyosarcoma of the uterus (poor margins,
high grade), and a doctor there gave me a protocol for cisplatin which he
had gotten from Georgetown Univ. The HMO okayed this treatment, and it was
given simultaneously with the radiation. Knowing what I know today, I would
reject both of these treatments as I've done some reading and have come to
believe that PROBABLY,
lifespans are not necessarily increased doing these things. More on this
later.
My first recurrence was 10/97 in abdominal area. Surgery to debulk was
successful, but the same thing happened in 4/98, plus a small, 1.5 cm spot
was found on the right lung in 6/98. I'm now deciding what, if anything, to
do. My local oncologist wants to do MAID or get me in a clinical trial.
Both things are not my first choices, plus I have
an appt. with a surgeon this Thursday. I looked for info as follows:

Has anyone else out there contacted Patrick McGrady (from the "Options"
book), or has anyone received "The Moss Report"? And
what do you think of the info you received? I supplied P. McGrady
of Port Ludlow, WA with copies of all my medical records, and for a fee of
$400, received his best guess of what I should do. One of the people he
likes is a doctor in Bonn, Germany who can do stronger chemo than U.S.
doctors. Don't know what I think of that, yet. I think copyright laws
forbid me to share details of these reports, but I just wondered if others
had tried these avenues of obtaining info.

In addition to that, I paid $275 for a report from Ralph W. Moss whose
phone number I happen to have with me: 718 636-4433 or
www.ralphmoss.com whose report I also found useful. But I wish there was
a humanitarian-type place to go to get this kind of info free. For example,
I think there should be some part of the American Cancer Society devoted to
up-to-date info gathering of both conventional and alternative treatments,
nutritional programs, and the like. I am in no way connected with either of
these 2 info resources, and believe they both are a little gun-shy about
chemo and radiation
FOR SOME CANCERS. This is just my opinion.

Back to me now, ok? I'm wondering if anyone has tried something called
Vittae Elixir and/or Dr. Sun's soup for their leio? I'm currently taking
the vitamins Dr. Andrew Weil recommends: lots of C ( I forget how much), E,
selenium, and beta carotines. I'm thinking of adding
melatonin, maitake, and milk thistle. Enough for now.

Again, thanks for this place to share info. I'll write back when I have
more info or results. Best of luck to everyone in their journey.
Pat M.