Hi, Bridget,
Wow, how nice you live in Canada! I have always
wanted to visit there. My husband went somewhere up
there on a hunting trip (I believe it was in Ontario,
though).
I don't mind you asking ANY question. The main reason
I joined this list is to share information and
support, and you can't do that too well if you don't
know the situation.
When Charles had surgery, they removed 40% of his
liver, removed his gallbladder, did a resection
connecting the bile ducts to the jejunum (part of the
stomach), and put in a biliary catheter, which we have
to flush 2 x daily with saline solution. It was an
extensive surgery (12 hours). The day we left the
hospital, the doctor who did the surgery told us that
all the path reports were negative for cancer.
On our first visit to the onc, she said she understood
that there was cancer in one place and she asked us if
that was our understanding. We told her "no" and she
said she would contact the doctor who did the surgery.
Today, she told us she did talk with our doctor, and
the way she put it was "after they sent that specimen
to pathology, the doctor did some more cutting to get
all of it." I'm very skeptical about everything
anyway, so I told her we would like a copy of what our
doctor had sent her, which she readily agreed to.
However, when I got to work this afternoon, I was
looking over it, and the way the pages are numbered at
the top, there are 2 pages missing. So I guess I'll
contact our doctor and request ALL pages of the
report.
I don't believe anything till I see it in writing (and
even then I'm not sure). Anyway, the onc wants to do
5FU once a week for 6 weeks, rest 2 weeks, then again
for 6 weeks, rest 2 weeks, then chemo and radiation
together 5 times a week for 4 to 5 weeks, and then as
a follow up, 2 more rounds of the 5FU. They also want
to give him something called "leucovorin" which they
said was not chemo, but some type of protecting agent.
I haven't had time yet to do any research on this one
and I haven't heard of it. But I have heard some bad
things about 5FU (aren't all of the drugs bad!!!).
Anyway, Charles told her he did not want to start
treatments until after the first of November because
we have several things going on next month and he
wants to be able to enjoy them (his son is getting
married 10/14 and he is the best man, of course).
Anyway, as of now, we're scheduled to start the
treatments on November 7th if we decide to go ahead
with it.
Sorry, this is so long, but I don't know how to make
it any shorter and give you the info. Look forward to
hearing from you.
Your friend,
Brenda
--- Bridget Rambeau <bsbridget@hotmail.com> wrote:
> Hi Brenda. Good luck with your visit tomorrow. I'd
> be interested in what she
> recommends if you don't mind sharing the info.
> I don't live in the States, I'm a good, ole Canadian
> and reside in Halifax,
> Nova Scotia. Are you familiar with this area? it's
> on the east coast, (about
> 5 hrs from Maine). I was in S.C. earlier this year
> (visiting our dear
> Lillian) and we went to Savannah while I was there.
> I fell so in love with
> the area that Lillian and her crew had to
> practically have me physically
> removed as roots were starting to sprout out all
> over my body! LOL
> Look forward to hearing from you.
> Your friend,
> Bridget
> PS: Look out Lillian, I know where you live...
>
> >From: Brenda Anderson <banderson0511@yahoo.com>
> >Reply-To: mol-cancer@lists.meds.com
> >To: mol-cancer@lists.meds.com
> >Subject: Re: [MOL] clinical trials, etc.
> >Date: Thu, 7 Sep 2000 13:16:19 -0700 (PDT)
> >
> >Bridget,
> >That's the same thing our doctor is telling us
> about
> >the chemo. As far as pain, Charles hasn't had any
> >pain from the disease. He was uncomfortable for
> >awhile after his surgery, but even then, he didn't
> >have a lot of pain. We're going for our second
> visit
> >to the onc tomorrow. We will find out what she is
> >suggesting as far as adjuvant therapy. What state
> do
> >you live in? We're in Georgia.
> >Your friend,
> >Brenda
> >
> >--- Bridget Rambeau <bsbridget@hotmail.com> wrote:
> > > Hi guys. I've never heard of bile duct cancer
> being
> > > referred to as primary
> > > liver cancer and was wondering where you got
> that
> > > information.
> > > Yes I did have the surgery in Aug.'98.
> > > Almost all sources I researched indicated
> radiation
> > > as an effective adjuvent
> > > treatment. As far as the chemo, the way my
> doctor
> > > described it to me was
> > > that it was intended to kill any stray cancer
> cells
> > > that may have drifted to
> > > an area outside the primary site where the
> radiation
> > > was being done. Because
> > > the drug (fu5) and the dosage were fairly mild
> with
> > > minimal side effects, I
> > > decided better safe than sorry. One of the
> problems
> > > is the lack of many
> > > clinical trials as it is such a rare form of
> cancer.
> > > So a lot of what they
> > > don't know is because it's never been tested in
> > > trials.
> > > Now it's my turn. May I ask a question of you
> that's
> > > somewhat unrelated.
> > > Following the surgery and up to this point, was
> pain
> > > (chronic) ever a
> > > problem? Thanks.
> > > Hope this helps some, I know how hard these
> > > decisions are to make.
> > > Your friend,
> > > Bridget
> > >
> > >
> > > >From: Brenda Anderson <banderson0511@yahoo.com>
> > > >Reply-To: mol-cancer@lists.meds.com
> > > >To: mol-cancer@lists.meds.com
> > > >Subject: [MOL] clinical trials, etc.
> > > >Date: Wed, 6 Sep 2000 07:19:08 -0700 (PDT)
> > > >
> > > >Dusti, thanks for your input. I have done some
> > > >checking on clinical trials but the only ones
> I've
> > > >located are for people who haven't had surgery
> to
> > > >remove their tumors. Since it was bile duct
> > > cancer,
> > > >that means it is primary liver cancer, so why
> chemo
> > > to
> > > >the whole body? I've done a lot of research
> and
> > > what
> > > >I've found says radiation is a treatment, but
> that
> > > >chemo has not been shown to be effective.
> Perhaps
> > > >Bridget could shed some more light on this.
> > > >
> > > >Also, Bridget, I was wondering if you had
> surgery?
> > > >
> > > >Your new friend,
> > > >Brenda
> > > >
> > > >
> > >
> >__________________________________________________
> > > >Do You Yahoo!?
> > > >Yahoo! Mail - Free email you can access from
> > > anywhere!
> > > >http://mail.yahoo.com/
> > >
> >
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