Chemo: Percentage Of Working?

In 2001 & 2002, the docs wouldn't tell me the percentage, the chance of
the chemos working, of getting rid of the cancer.

They kept flip-flopping on statements, & I couldn't get a straight
answer.

Then: "excellent chance" (Not!), "trust me", .... "do things my way,
then we'll do things your way" (Not!), .... & the threat: "cancer is a
horrible way to die. you don't want to die that way, & you won't if you
trust me, do what I say." (Not!), .... & "the chemo won't damage your
heart, I promise. don't worry about it." (Not!).

Today, I finally got an answer, but not the one I asked for.

The onc said that without chemo, I had a 75% chance of dying, with chemo
50%. In 2002.

Die how soon? No answer. Don't know.

What I asked & want to know, is what chance the chemo had of working, of
getting rid of the cancer, or of bringing it under control.

The chemos didn't work. They made me very sick, caused major congestive
heart failure, etc. Made dying of cancer, so much more painful, awful.
Destroyed all quality of life.

Does anyone know how to calculate, what chance the chemo had of working?

The cancer was third-stage, spread to lymph nodes, the lump about 6 by 6
by 2 inches big, the breast orange-tan & pitted, .... before the docs
would acknowledge it might be cancer, & get me to any care for it, ....
that was, after about a year & a half of my begging one doc after
another for help, for good testing & diagnosis, in Texas & Louisiana.
And with 100% insurance paid anywhere.

I doubt the Medical Industry could be worse in TX & LA.

------------------

Susan Wms, Su_Texas my opinions

PS Dealing with Jenny Ch@ng at Baylor/Methodist was really bad. She
proved a always-displeased & impatient, hyper diva, who made constant
demands, & didn't make sense.

For one thing, she had me take off my top & bra, lie on a table, get
ready for her to do a biopsy, .... sent her staff around for equipment &
such, .... then burst out snickering, acting high, stupid & silly,
saying that she couldn't do it, .... that she'd put us thru all that for
nothing, that the usual staff did the biopsies, not her. Ha ha.

And she pranced off, issuing more of her nonsense orders & statements,
acting impatient & displeased, .... arrogant & vain, with nothing
worthwhile to justify it. ???

As for chemo, at first she said the chemo had no chance of working. I
said OK & that I'd try somewhere else, try some other treatments.

She glared at me, then said "excellent chance. it has an excellent
chance of working."

I kept asking her which is it ("no chance" or "excellent chance"), & she
kept saying "excellent" & that I'd have to trust her. She refused to
explain.

I was doing everything possible to cooperate, no matter how badly she
acted, .... & was desperately hoping she was an expert in breast cancer,
& knew what she was doing. [I now know that she super didn't!]

I should never have trusted her. Should have kept checking out
alternative treatments, should have tried anything other than her
chemos.

But I was exhausted, so tired & traumatized from trying to find any
legit med care in Texas & Louisiana, & failing to over & over.

As a result, I didn't get to make an informed choice, about the best
ways to fight breast cancer, .... because the docs lied to me & demanded
trust, blind-faith.

It's so cold-blooded, cruel, wrong, for docs to lie to, con & harm
cancer patients like that.

The grieving after a back-stabbing & betrayal this bad, this painful,
.... will never let up, never end. It's bad beyond belief.

<su-texas@webtv.net> wrote in message
news:26513-454F9D18-312@storefull-3135.bay.webtv.net...
> In 2001 & 2002, the docs wouldn't tell me the percentage, the chance of
> the chemos working, of getting rid of the cancer.
>
> They kept flip-flopping on statements, & I couldn't get a straight
> answer.
>
> Then: "excellent chance" (Not!), "trust me", .... "do things my way,
> then we'll do things your way" (Not!), .... & the threat: "cancer is a
> horrible way to die. you don't want to die that way, & you won't if you
> trust me, do what I say." (Not!), .... & "the chemo won't damage your
> heart, I promise. don't worry about it." (Not!).
>
> Today, I finally got an answer, but not the one I asked for.
>
> The onc said that without chemo, I had a 75% chance of dying, with chemo
> 50%. In 2002.
>
> Die how soon? No answer. Don't know.

Su, Doctors, the best doctors, aren't magicians. They can't tell anyone
exactly when they will die or what their exact chances are.

The worst doctors might well give you such details - but you can't rely on
them.

I reckon the onc who didn't tell you what you wanted to know is a good
doctor.
>
> What I asked & want to know, is what chance the chemo had of working, of
> getting rid of the cancer, or of bringing it under control.

They can't give an exact figure. You are asking unreasonable questions.

What's worse is that you might be giving newcomers to this group the wrong
impression about treatment. Everyone else has has good treatment and accepts
the limitations of their advisors.

Only someone who is sitting in the electric chair or who has a noose round
his neck knows to the minute when he'll die.

Mary

su-texas@webtv.net wrote:
> In 2001 & 2002, the docs wouldn't tell me the percentage, the chance of
> the chemos working, of getting rid of the cancer.
>
> They kept flip-flopping on statements, & I couldn't get a straight
> answer.
>
> Then: "excellent chance" (Not!), "trust me", .... "do things my way,
> then we'll do things your way" (Not!), .... & the threat: "cancer is a
> horrible way to die. you don't want to die that way, & you won't if you
> trust me, do what I say." (Not!), .... & "the chemo won't damage your
> heart, I promise. don't worry about it." (Not!).
>
> Today, I finally got an answer, but not the one I asked for.
>
> The onc said that without chemo, I had a 75% chance of dying, with chemo
> 50%. In 2002.
>
> Die how soon? No answer. Don't know.
>
> What I asked & want to know, is what chance the chemo had of working, of
> getting rid of the cancer, or of bringing it under control.
>

Yes I could probably work out a statistical answer to that with a bit of
effort (and some more info) but it would probably be meaningless because
the uncertainty would be so large, even when all the details are well
known. As I said in another thread, a stage IV patient had a median
probability of survival of about 2 years, but six months and ten years
were not uncommon; the spread is that wide.

I'm not quite clear what your condition is at the moment. I know you had
all sorts of complications, and as I recall a contralateral
recurrence. Is the disease still confined to breasts or has it spread
further, and if so, where?

The best answer I can give to your question is that using chemotherapy
extends life on average by about a year or so. I don't have a direct
reference for this statistic. There was a study in 2001 (base on 1980's
data) that showed about a 9 month average quality life benefit for
chemotherapy in treating primary breast cancers (of course many have no
recurrence with just surgery alone, so this statistic is not terribly
meaningful in this context, but it shows there is a positive benefit).
And I think the effect in metastatic cancer is roughly to double the
survival time.

We have to look at life expectancies, not "cure rates" because when we
are talking about relatively long times and a disease which mainly
affects older people and may be chronic, we have to take into account
the fact that everyone has a 100% chance of dying, sometime.

It is quite possible that the doctors either don't know the answer, or,
like most people, just don't like talking about it. Doctors can be
embarrassed just like anyone else, and at least until recently, had no
special training in discussing matters of death. So it is not too
surprising if they try to fob you off with platitudes. I have
experienced the same. They know what the book treatment is for this
condition, they know that accumulated wisdom says that it works as well
as anything we know, but they may well not know what the details of the
benefit are, and they almost certainly will not know how to present such
messy statistics to someone without a mathematical background.

I remember I had to explain my training in statistics to my wife's
oncologist before he would even tell me her median survival probability.
He knew, but didn't have the language to express it
non-mathematically, and knew that he risked being seriously
misunderstood if he tried.


Tim

Hi Tim,

The cancer is forming at the injury sites.

In Jan. 1998, I hit pavement & slid, damaging most things head to toe,
breaking my arm at the shoulder, injuring spine top to bottom, injuring
left breast, etc.

--------------------

When I was prevented from getting any med care, testing, treatment, &
from helping myself, .... early Aug 2005 to late Oct 2005, .... the
cancer went to bone mets. Was cutting off my spine in three places,
about to paralyze or kill me.

After that, I had an adverse reaction to Naprysyn (sp?), which caused
the docs to do testing, which found the bone mets. Otherwise, they
wouldn't have figured out what was wrong.

I had radiation treatments to those three places in spine, which made &
kept me extremely ill for many months.

Then the doc started Faslodex (estrogen blocker) shots, which he said
had a 35% or less chance or working, & which didn't work.

So far, no treatment has worked, & most have been extremely harmful.
However, the Faslodex wasn't very harmful.

Right after I had radiation to the spine, the cancer was in the ribs on
the left side too, & painful off the charts.

--------------

In Oct. 2001, the docs finally acknowledged that the huge lump might be
cancer.

In checking out breast cancer care, I experienced one nightmare
situation after another. Mostly, med care is very primitive & awful
here.

In Dec. 2001, I had the left breast removed.

In Feb. 2002 or so, the surgeon botched the port-a-cath surgery (Ben
M@ck in Longview, Copp1dge), causing a hematoma about the size of half a
tennis ball or so. And which delayed chemo for about two months.

Then I had the chemo, which destroyed my heart, ruined whatever health I
had left, .... & the docs wouldn't test, diagnose, acknowledge this, or
help me. It took until mid-2005, to get the major congestive heart
failure & mitral valve leakage diagnosed. By then, it had almost killed
me.

In April 2003, I tried to have the right breast removed, but the surgeon
botched it (Anthony Lucc1). Butchered the breast & chest instead.

-----------------------

Then after chemo in 2002, I started on Arimidex & had radiation.

Severe adverse reactions to Arimidex, worse & worse, but the doc used
scare tactics to keep me on it for about a year & a half, until it had
almost killed me. When I stopped on my own, & the doc's scare tactics
didn't work, .... he finally told me that the adverse reactions I'd had
& was having, were typical for Arimidex.

Including the sudden acute lymphedema in left arm, which worsened
rapidly, until I stopped Arimidex.

----------------------

Due to my being prevented from getting any med care or helping myself in
late 2005, the heart failure & leakage worsened too.

----------------------

This (the docs' lies & cr*p care for cancer) has proved a nightmare.
Hell on earth.

In October on TV, an expert said that breast cancer treatments were the
most toxic & harmful treatments, with the least chance of working.

I wish the docs would tell us that up-front, & give us choices in our
treatments, instead of insisting "trust me", & doing so much pain-filled
harm, over & over.

I certainly would Not have done their chemos, had I known the risks, the
harm they'd do, & the scant chance of working. Known how badly the
Medical Industry has now failed, & some of the reasons why.

It's important that docs say up-front, that they've basically still
nothing legit to offer, for breast cancer, .... instead of what they're
doing now.

---------------------

Yesterday, I was injured at the restaurant, where I eat lunch.

There was a group of people (large family from church), who was acting
rather selfish & such, rushing around, no empathy or concern for others.
And they didn't calm down, settle down. Kept bumping me, as I sat at my
table.

I decided it was best for me to get up & leave. As I was standing,
getting my stuff together, one of those people ran into me hard from
behind, did not apologize, & went away.

That was a hard blow esp. to the lumbar, where the cancer is very
active, & cutting off the spine. For a while, I couldn't move. Then
managed to leave.

Today, the pain is so bad! And it affected the nerves down the left leg.

I'm hoping the damage isn't permanent.

I realize now, that this could have paralyzed me. I'm lucky it didn't.

Pain!

---------------------

Susan Wms, Su_Texas my opinions

Exactly! Well said my friend. If the treatments didn't work, I wouldn't
have a friend that's a soon to be a 23 year survivor. I belong to other
boards and there's gals over there that are anywhere from 10-20 year
survivors. [alot of these are stage IV] So this IS a beneficial plan
for lots of people. It really is what some call a "cr*p shoot" It
depends on alot of things after you're dx.
We've got a gal that posts over there that was dx at stage IV from the
get go. And it was absolutely everywhere. She's now a 3-4 year
survivor. She was part of a clinical trial for a vaccine.
There's also an expression that pops up now and then on different
boards, including this one. "The only way you know that you've survived
BC, is if you die of something else"
I guess we just have to do what we think is right, and hope and pray
that what we did was the right thing for us as individuals.
Unfortunately things don't go well for all, and that's very sad indeed,
but not a reason to give up hope on what's out there for us altogether.
Again I wanted to say that you/hubby are in my thoughts and prayers.

Take care there dear/God bless
annie


Mary Fisher wrote:
> <su-texas@webtv.net> wrote in message
> news:26513-454F9D18-312@storefull-3135.bay.webtv.net...
> > In 2001 & 2002, the docs wouldn't tell me the percentage, the chance of
> > the chemos working, of getting rid of the cancer.
> >
> > They kept flip-flopping on statements, & I couldn't get a straight
> > answer.
> >
> > Then: "excellent chance" (Not!), "trust me", .... "do things my way,
> > then we'll do things your way" (Not!), .... & the threat: "cancer is a
> > horrible way to die. you don't want to die that way, & you won't if you
> > trust me, do what I say." (Not!), .... & "the chemo won't damage your
> > heart, I promise. don't worry about it." (Not!).
> >
> > Today, I finally got an answer, but not the one I asked for.
> >
> > The onc said that without chemo, I had a 75% chance of dying, with chemo
> > 50%. In 2002.
> >
> > Die how soon? No answer. Don't know.
>
> Su, Doctors, the best doctors, aren't magicians. They can't tell anyone
> exactly when they will die or what their exact chances are.
>
> The worst doctors might well give you such details - but you can't rely on
> them.
>
> I reckon the onc who didn't tell you what you wanted to know is a good
> doctor.
> >
> > What I asked & want to know, is what chance the chemo had of working, of
> > getting rid of the cancer, or of bringing it under control.
>
> They can't give an exact figure. You are asking unreasonable questions.
>
> What's worse is that you might be giving newcomers to this group the wrong
> impression about treatment. Everyone else has has good treatment and accepts
> the limitations of their advisors.
>
> Only someone who is sitting in the electric chair or who has a noose round
> his neck knows to the minute when he'll die.
>
> Mary

su-texas@webtv.net wrote:
> early Aug 2005 to late Oct 2005, .... the
> cancer went to bone mets. Was cutting off my spine in three places,
>
> Then the doc started Faslodex (estrogen blocker) shots, which he said
> had a 35% or less chance or working, & which didn't work.
>
> So far, no treatment has worked, & most have been extremely harmful.
> However, the Faslodex wasn't very harmful.
>
> Right after I had radiation to the spine, the cancer was in the ribs on
> the left side too, & painful off the charts.
>
>
OK, to cut a long story short you were diagnosed at stage IV last year
with multiple metastases to bone.

The chances of anything "working", if by that you mean putting you into
long term remission, is small, about 5%. That does not mean they are
not doing anything to help. All the treatments at this stage are
working on giving you as much quality life as possible either by slowing
the growth of the cancer or by stopping the pain and other symptoms it
causes.

The primary treatment for bone mets is radiotherapy, high dose radiation
directed at the cancer sites. This is usually very effective, it takes
a month or two to work, and may have side effects such as 'sunburn',
lethargy and sickness, but it typically sets back the targeted tumour by
about two years growth. It doesn't often eliminate it completely, but it
most likely stops the pain from that particular site for the rest of
your life. However as you have experienced, other sites quickly appear.
There is some evidence that the smaller sites grow faster once the
major ones have been zapped.

It is normal also to continue hormone therapy such as Faslodex. This is
unlikely to stop the cancer altogether, but can typically halve its rate
of growth.

The same applies to chemotherapy, it won't cure the cancer but it can
buy you maybe another year or two of life, at the cost of a few months
serious discomfort and some tissue damage. But as you already have CHF,
I don't suppose you are likely to be a candidate for any more of that
treatment.

Other therapies available are pain medication, and treatments to reduce
the side effects of these primary treatments.


Tim Jackson

The docs knew from the first, that pain killers don't work on me, ....
so it was very important for them to give me the best cancer treatments
possible in 2002, for the third stage breast cancer, .... but I didn't
get good care from the docs, was lied to & didn't get to make my own
choices.

The docs chose to act b*tt-ugly ignorant & arrogant, determinedly dumb &
dense, & do maximum harm instead.

The estrogen-blockers didn't work on me, & the Arimidex did a lot of
harm. The Faslodex, not so much. But none of that worked. Hormone
refractive.

The docs' treatments for breast cancer are still way too primitive,
won't-work, toxic, .... but the docs don't tell you that, don't give you
a chance or choice. They do Not treat us with respect or dignity. More
like cattle they're intent on herding into their slaughter houses for
$$$.

Their arrogance, lies & betrayals, do hurt. An awful lot.

The docs should level with us up-front, tell the truth, .... work with
each of us to find treatments that might work, might give us a chance,
.... rather than just the mass poisonings & harm of today.

----------------

Susan Wms, Su_Texas my opinions

It's important that the docs start to quickly acknowledge & openly
discuss, when their treatments have failed, when they've done more harm,
.... fully inform the patient of how serious the situation is, ....
discuss the alternatives, .... rather than act like determinedly dumb,
can't get a clue, sadistic jerks & jack@sses.

The important thing is that we have a chance to help ourselves, as soon
as possible, & esp. when the docs' treatments fail & keep failing.

It's important that the docs start fessing up quickly, so we can have a
better chance of surviving, of finding some legit might-work treatments
for cancer, outside of the way-too-heavily ruled & regulated Medical
Industry.

It's disgusting, cold & cruel beyond belief, the way the oncs now act,
the way they do things.

Some docs say that they'd do things much differently, if the Medical
Industry weren't so heavily controlled by the PHARMA companies, govt,
insurance companies, special interest groups.

The docs say they have no choice. They push whatever they're told to,
regardless. And they can't do anything else, unless you can pay cash
under the table.

--------------------

Susan Wms, Su_Texas my opinions