Hi, Bridget,
WOW, you really had a rough time with the doctors,
didn't you? I can't understand how they can be so
cold sometimes!! I don't have anything against the
doctors that we are dealing with; they have been very
kind and compassionate to us, but I still don't think
they are telling us everything. After reading what I
got from the oncologist (which had been forwarded to
her by the surgeon's office), I don't think she gave
me everything...it looks like some pages are missing.
So I'm going to request a copy of everything from the
surgeon's office.
Charles doesn't know I've been discussing him, but he
wouldn't mind if it is something to help me (support)
and maybe him (information). He does play on the
internet some, but he would never get into this
chatting thing...it's just not his nature.
I believe you're right about the chemo. I've done a
great deal of research (I've been on the internet,
read several books, talked to another doctor, etc),
and everything I've seen has said that radiation might
help, but chemo is rarely of any benefit. That makes
me even more concerned that we're not being told
everything.
My sister is an RN and her husband is an Advanced
Paramedic and Director of our local ambulance service,
so they've given me a lot of assistance in deciphering
what everything means. And, no matter how bad things
are, she will tell me the truth, which is what I want.
People are different, but I'm they type that wants to
know everything. I can deal with it better if I know
the truth.
I'd love for us to come up there sometime. Maybe we
can. And you are welcome to visit us. If I had
gotten on here a little sooner, you could have visited
when you were down here.
Sorry to talk so long again. Do you think I should
write you privately or just continue on here?
(Everybody might not want to read all this!)
If you come up with anything on the research, let me
know. By the way, how old are you? I'm 47; Charles
is 49.
Your friend,
Brenda
--- Bridget Rambeau <bsbridget@hotmail.com> wrote:
> 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
>
=== message truncated ===
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