Hi, Susan. I can't really help you with your inquiries as I
had the
standard surgery, chemo and radiation. I am basically
writing as I'm a
little confused about what you mean "being treated
systemically." It was my
understanding that chemotherapy is a systemic treatment, but
it sounds as if
you mean something else entirely. Are you saying that you
cannot use any of
the standard chemotherapies? It sounds as if you are
exploring alternate
methods of fighting the IBC beast. I certainly hope there
are some people
in this group who can help you in your battles. Please
don't give up!
You're in my prayers!!
Jean, 57, No. Calif.
----- Original Message -----
From: <SusanRNLAC aol.com>
To: <ibcibcsupport.org>
Sent: Monday, December 11, 2006 4:44 AM
Subject: [ibc] Re: [IBCResearch] NEED HELP...time is of the
essence
>
>
>
> In a message dated 12/9/06 10:08:02 PM Pacific Standard
Time, SusanRNLAC
> writes:
>
> Hello, Friends,
>
> I have received one reply to my letters from Carole
that were sent out to
> the address by myself. I know that Gayla and Barbara
have been trying to
> forward my letters.
>
> I am dealing with some serious issues right now. I
have been an active
> reader on this website for almost 3 years. I am just
wondering if any
responses
> are just not gettting mailed to me.? I have received
only about 10 at
most
> posts in response to my questions in the last 3 years.
>
> When my letters are returned I am told the address is
too long and has to
be
> less than 16 characters. If this letter goes out could
I please receive
> some responses about my concern about being chemo
resistant and being
treated
> systemically. I was hoping to hear form some others
being treated
> systemically. I believe Mary Vaughan goes to UCLA and
is not being
treated with chemo.
> She lives in Santa Barbara near me and I do not have
her e-mail address.
I
> am wondering if she sees Mark Pegram..medical
oncologist who treats
without
> chemo targeting histology and pathology with
biologics. He is actively
> participating at the San Antonia Breast Symposium.
>
> If I do not hear any responses I will forward to Gayla
to respond to me.
I
> have also wrote Ginny without response. I will also
forward to Barbara
who
> has been most helpful. I will light candles at Mass
tomorrow for Gayla
and
> Barbara and do my Rosary for all of my ibc sisters.
>
> I know tha the San Antonio Symposium is starting this
week. How
exciting.
> So many answers to my questions. My 1st oncologist,
10-03 ato 04-04
would
> not accept any of my research. My current oncologist
relishes my
research and
> respects me as a highly educated health professional.
>
> It would mean so much to me to hear from you. Thank
you. Also besides
Mary
> Vaughan who I do not know how to contact (Maybe seeing
Mark Pegram,
M.D.,)
> I know that Kaye3 is also a neighbor of mine in 1000
Oaks.
>
> I am trying to locate anybody else resistant to
anthracycline and taxane
> chemotherapy. Anybody beign teated systemically with
endocrine therapy.
> Anybody not having surgery. Anybody treated with
radiation alone.
Anybody not
> having surgery due to no adjuvently chemo to give or
other reasons.
There must
> be somebody else out there. This will be my last
attempt.
>
> Most Sincerely....Thank YOU
>
> Susan Anne Druyen, R.N.;M.S.,LA.c. (Currently not
practicing dur to
cancer)
--
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