Hi Brenda,
I'm farther east than Ontario; it's more central. But the Atlantic
Provinces, where I live, are among the most scenic and friendly parts of
Canada. I share a place with my girlfriend, Joan, and we have lots of room
here and love company. So anytime you and hubby would like to visit our area
you have free room and board and I'll even throw in the tour guide (that
would be me, of course). And I want you to take this offer very seriously
because I really mean it!
You're smart to get the reports yourself. I couldn't believe how (I can't
even think of a word, it's that bad) so I'll tell you what happened instead;
the short version. Before my surgery they told me that they were taking out
my gall badder, my common bile duct (which was resectioned like Charles's)
possibly part or all of my pancreas and some minor things that aren't
important. Point is, after the surgery, it took me 2 days to find out
whether or not I was diabetic or insulin dependant. And that was after
asking numerous times. Then his interns, after I had bugged them for days
whenever they made rounds(I never saw the surgeon after the first day) told
me that they got all the cancer, there was no spreading, no follow up would
be needed and basically I had nothing to worry about forever after. I was
told this on the morning I was being discharged, although I didn't know this
at the time. As soon as they left, I let out a big hoop and frantically
called all my family and friends to tell them to stop worrying, everything
was over and I was fine. At 5pm that same day, about an hour before I was
being discharged, my surgeon came in with this grim look on his face and
told me to sit down. I was alone at the time. He proceeded to tell me that
the cancer had spread into my pancreas and lymph nodes. That they thought
they got it all but couldn't be sure, and that it was a very aggressive form
of cancer that would probably require radiation and chemo txs, and that he
was very sorry. On that note, he shook my hand, wished me luck and left. To
add insult to injury, when my onc took xrays he told me he thought I still
had my gallbladder but wasn't sure. It took me almost 4 mths to find out I
still had it. Unreal! Anyway, it left me also very skeptical of any
information I'm given until I've confirmed it myself.
That seems to be an awful lot of chemo. I had 5FU but a much smaller dosage
(I had only 8 txs.) I thought chemo was ineffective against our type of
cancer. Very confusing. I have lots of time on my hands so I'll try to do
some researching for you tomorrow and I'll send you whatever I find that
might be helpful.
Boy, you thought your note was long. It's no wonder it takes me so long to
get thru my mail; it's like a full time job. LOL
Your friend,
Bridget
PS: Give my best to Charles; what does he think about you talking about his
condition to the world? Is he an internet buff himself?
>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: Fri, 8 Sep 2000 12:44:37 -0700 (PDT)
>
>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
> > > > >
> > > > >
> > > >
> > >__________________________________________________
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> > > > >Yahoo! Mail - Free email you can access from
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> > >
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