I have no tips for you but you've achieved a wisdom which not every cancer
survivor will accept. It's been eight years since my diagnosis and I've
valued every minute of every day since then. My husband was diagnosed last
year and his attitude is the same as mine - he learned from me.

The worst thing which can be said to us is that we're cured, it just isn't
like that.

We must all live for the moment in the knowledge that it might not always be
as good as this - but we should not worry about the future.

Thanks for your post.

Hugs to both of you,

Mary

Sorry to hear of your wife's situation.  I've interspersed some comments
below.

That would be Gemzar, a chemotherapy drug which can be combined with
taxanes for metastatic bc.  The combination on average delays the
disease progression by a couple of months.

But he said nothing about Tykerb. FDA sheet on Tykerb shows

As far as the cancer is concerned, yes.  I don't think it particularly
adds to the Xeloda side effects.  But of course it is experimental, and
no-one really knows yet.  As I understand, to be effective Tykerb has to
be used in conjunction with a traditional chemotherapy agent, and Xeloda
is the one it has been tested with and proved to work with.

You could ask the doctor about clinical trials, and mention Tykerb.  Is
the Avastin part of a trial?

That would suggest Gemzar isn't such a good idea then, because is means
continuing the Taxol, which is driving the neuropathy.

Hmm, that could be the Taxol or it could be the liver mets or other
occult mets.  Probably both.  Either should be reflected somewhat in the
blood tests.  If blood counts are down, then it seems to me that "stop
all" could be a sensible treatment at this stage.  We are counting the
potential gains with any treatment in months on the fingers of one hand,
and the loss of life quality from the chemo is chewing up most of that.

Once you are *born* you are never really free.  Life is a terminal
disease.  You can view it that she got cancer, got cured, lived free of
disease for 7 years, then got it again.  (Unlike many infectious
diseases there is nothing to stop cancer getting two bites of the
cherry.)  Or you can view it as spending seven years waiting for the
other shoe to drop.

I don't suppose this will come across as very helpful, but my advice
would be to live with whatever energy state she has.  I spent a lot of
time trying to keep my wife nourished and hydrated as the disease
progressed, and mostly I was banging my head against a wall.  Current
thinking is that pushing the patient to eat or drink isn't really doing
them any good, it's just denial of what is happening.  Of course if you
(or the medics) can identify a cause of energy loss apart from the
obvious, then treating that can be a great help.  I'm not saying you
shouldn't look for a solution, but I am saying that sooner or later you
will come to this situation and there will be no solution.

But does getting the munchies actually boost her energy?  I suspect it
probably doesn't.  It doesn't seem to work that way.  If it does, than
that would be an indication that there is something else to look for.

Tim Jackson

Hi, Steve -

Gotta tweak Tim's response just a tiny bit.  Tykerb is still in some
clinical trials but has been approved by the FDA in combination with
Xeloda.

There are some prerequisites - the missus has had to have had an
anthracycline (AC - everybody in the Colonies gets this), a taxane
(Taxol, Taxotere or Abraxane) and Herceptin and shown disease
progression on Herceptin.  I don't see any mention of your wife's HER2/
neu status.  If you're not sure what that is maybe a look here will
help -

http://en.wikipedia.org/wiki/HER2

Unless your wife's disease overexpresses HER2 Tykerb will have no
effect - but you'd already be doing Herceptin and I didn't see any
mention of that.

My wife and I were trying to stall Xeloda until Tykerb was approved by
the FDA so we selected Gemzar for the round of treatment we just
finished.  Dr. Smiley (yes, our onc's name really is Smiley), the wife
and I agreed that she was gonna get both Gemzar and Xeloda anyway so
it really didn't matter which one we did first and as I mentioned we
were trying to put off Xeloda until Tykerb was available..  She's had
almost continuous Herceptin for most of the last eight years (she has
lung mets).  Tykerb got approved just about the time the Gemzar/
Herceptin routine quit working so our timing was pretty good.

I learned a long time ago not to tell people that a particular
treatment regime would be easy based on our experience - everybody's
different but the only real issues we had on Gemzar were fatigue and
fluid retention - and the fatigue wasn't nearly as bad as it'd been
with some of the other treatments we'd done.

I think Tim's spot on when he says that rather than boost her energy
it's probably better to live within her limitations.  You guys have
been doing this dance for awhile and probably have noticed that the
days prior to treatment through a couple days after treatment is when
her energy level is highest and that it's probably lowest about mid-
cycle.  We plan things based on where we think Deborah's energy level
will be.  We coast through the days where she's really tired, go out
to dinner (or I cook), let the house go a little bit and spend a lot
more time at home.

On the Gemzar vs. Xeloda thing it really doesn't matter, Steve - she's
gonna get both of them eventually anyway.  The only thing that would
influence my decision there is whether Tykerb was appropriate and if
it is it'd be worth considering doing the Tykerb + Xeloda thing.

I really can't say how Xeloda is affecting us yet - we're right about
in the middle of the first cycle so we don't have a lot of experience
under our belt yet.  I will say that between the 5 tablets of Tykerb
and 12 tablets of Xeloda every day she's taking a lot of damn
pills  ;-)

Hang in there, Steve -

allan

My wife has had fourteen days of Tykerb and Xeloda.  She took five
Tykerb pills early in the moening on an empty stomach. One half hour
after eating something she took four Xeloda  and then another 3 Xeloda
pills in the evening.  Every thing was going smooth till about the
thirteen day when the diaderra and the sores in her mouth started to
appear.  On the seventeen day she entered the hospital and things got
worse before getting better.  The doctor , who by the way is one who
we have confidence in, said her body lacked the enzime needed to get
rid of the Xeloda after twelve hours.
She is coming home tomorrow and will have a C scan Monday.

My wife was the first person in Central Illinois to have this
combination since the FDA approved Tykerb outside of the clinical
trial.

My wife Mets breast cancer came four years and five months after her
breast cancer in Nov, 2001. It is now in her liver.
We have been thru Herception, Avistaisn, Navelbine and now Tykerb and
Xeloda.  Where we go from here is yet to be determined.  But like the
one person said once you got it , it seems like it will always be
there.