A fair question, and one that I've thought a lot about myself. My
father died of PCa in the 1970s, and the thought of suffering as he
did does not appeal to me at all.

Right now, I'm in remission after SRT to deal with a recurrence in
2006, but I'm well aware that I'm one blood test away from moving into
the big leagues. If I continue further down this road, I will make an
appointment with the doctors at the local (well-respected) Hospice
facility that I would likely use, and have them walk me through the
expected progression and what they will be able to do to help me
through it. I'll also try to meet with other patients (preferably
those with PCa) and families currently at Hospice to see how their
experience has been, and to better understand what is to come. BTW,
Hospice services are paid for in full by most insurances, Medicare and
Medicaid.

Over the years, I have had several friends and family members use the
local Hospice facility, have visited many of them there and ALL have
expressed complete satisfaction with the services they were provided,
in terms of pain management, comfort, kindness, psychological and
emotional support etc. Based on this track record, I expect that I'm
going to be pretty satisfied with what is offerred; I think the
Hospice groups have got their act together pretty well, and that
things have changed substantially since my father's day (at that time,
we had to argue with the doctor to prescribe any narcotic based
painkiller even at the very end; his theory was that my dad might get
addicted, and morphine would blur his mental acuity....which wasn't a
bad thing IMHO).

But if I'm still not satisfied, I will take a hard, long look at
moving to Oregon, which allows doctor assisted suicide for terminal
patients in their final days (the Death with Dignity law). The
experience in Oregon is interesting; the law requires you to apply for
the lethal prescription some time in advance. But of those who get and
fill the prescription, the numbers of those who actually use it are
surprisingly small (only 46 in the entire state in 2006). I think that
indicates that people get the prescription as a safeguard if their
situation becomes intolerable, but very few actually find that they
cannot cope, which may be a tribute to how far we have come in terms
of caring for the terminally ill. I hope so anyway. Info about the
Oregon law can be found at www.oregon.gov/DHS/ph/pas/ for those who
are interested.

Hope these thoughts are helpful.

Fred

Nospam,

Are you a new poster?  (just curious)

I suspect most of the media referencing prostate cancer is about early
diagnosis.  To date, that is the topic about which most long-term
information exists.  All of the newer "end state" developments and
discoveries are too new to have a history and some (e.g., Provenge) are
still mired in testing.

As to what can be expected, I will tell you of my father.  His PCa was
diagnosed in 1974 and after cobalt radiation, estrogen ADT, and
chemotherapy, he had a near-fatal heart attack, a couple of hernias, broken
ribs after sneezing, and literally withered before our eyes and died.  In
the end, his bones were riddled with cancer and the attendant pain was so
bad that it appeared only to be abated when the cancer got into his brain.
He liteally faught it ti the last second, but finally died.

I swore, after that, if I ever got the disease, I would not fight it so long
and I would not even consider chemo.  All chemo did was extend his life and
make the quality of that life a horror.

However, that was then and this is now.

Chemotherapy is better.  The stuff they have now focuses on prostate cancer.
Furthermore, the meds they add to the chemo regimen are much better at
keeping the QOL within reason.  Radiation is tremendously more accurate and
less invasive and exhaustive.

Since I don't know if you're a regular poster with a new addy, I don't know
just how far you are into the fight against this bastard.  I will therefore
assume, based on your statements, you know you are nearing the end.  I
expect to be there at some point.  When I am there, I will accept all the
palliative treatments available.  Since chemo is better now, I will try it.
But, the nice thing about chemo is, if you find your extended life is not
worth living, simply stop taking it.

I wish I had some help for you on this.  I cannot even imagine being in that
situation.

Hi nospam,
For those who will be walking the same path as you sometime in the future,
what has your psa been and how has it skyrocketed?

Ron S.

Likewise, I would be interested in a bit of your history/journey.  I
may be getting there myself at some point in the future.  In the
meantime, I can offer you this. I've just started a blogging site
called talkingaboutcancer.com to deal exclusively with the emotional
aspects of cancer, which you could post your request on. While it is
very new, there are a number of folks who may have some good advice to
give you and, additionally, the dialog would be of benefit to others.
You can go to the site and click on New Post to submit it or just
reply to this with your permission to post and I will put it up.

This is a great group, one that I have used myself at various times,
so keep active on it as well.

I wish you all the best.

Doug

Summary: got any advice for those in the final stages, with perhaps a
few months left to live?

I read lots and lots about prostate cancer treatments but they are
mostly for those with early detection. I am to the point there is not
much left, and pretty much tired of seeing doctors.

I know most of the men with a very advanced condition probably don't
feel much like using the internet. But I would very much like to hear
about what I have to expect now that my PSA is skyrocketing. The last
stage is chemotherapy but I am not so sure that is a good choice for me.

I have access to various counselors and such, but they require
out-of-town trips that are getting logistically difficult for me. In
addition, the doctors and such generally won't give me any straight
answers and tend to hem and haw lots and in general are really vague. In
addition, while I have access to very good doctors they are all
overloaded and can't spend adequate time with me.

Once I had a different cancer doctor while mine was on vacation, and I
mentioned how much time I probably had left and how much I could expect
from chemotherapy, and he mumbled agreement, perhaps not realizing what
he was confirming. Other than that, I have had trouble getting much
detailed info. In the past I have had numbers based on what I read here
and on web sites, and these tended to be more accurate than what I was
told by doctors. For example, in asking my prostate cancer specialist,
PhD and MD, involved in lots of research projects, what treatment was
next, he said don't worry that it will be years before you need to worry
about it. Six months later he told me he could do nothing further for me
and I was gonna die...seek help elsewhere. It was most strange.

My wife is very concerned and stressed about how she is going to pay all
the bills and handle final details. I really hate to burden family more
than required. I would like to do as much as I can now while I am still
capable, but this is a hard thing to find people with experience in
since the experienced are mostly dead. I don't have enough resources to
afford nor consult estate planners and such and since I have a negative
estate it seems a moot point (I was uninsured, unemployed and too sick
with side effects of treatment for years and had to spend everything
before the state would pay for anything.)
Any tips, pointers, urls etc. would be appreciated.

====> hi no spam - if you want to know more, just write me.  i've been
down this trail before with my dad.  he died FROM the prostate cancer,
not with it.

i will try to fill in some of the blanks for you.

judging from what you wrote,  you are in the advance stages and on
chemo.  you are probably hormone refractive.  so, when did you go
hormone refractive?  if you use that date,  then, that will give you a
ball park figure on how long you have left to live.

as to pain management - there are three stages - going from the light
pain management to the extreme pain management.  as the skeleton system
is compromised by the cancer, it will collapse and pinch the nerves thus
causing the pain.

they do have some good end of life pain meds so that part will be ok.

strontium 89 treatments does help on the bone pain.

as far as what to do on dying......  my advice is that you got a chance
to put things together.  this is something that most don't have the
chance to do.  it's not like saying, "you know what?  the sun is out.
the weather is nice and warm.  it's a good day to die....."

and then again, there's the attitude of the public on their take about
dying. it's so permanent.   speaking on that,  there was a salesman who
sold insurance and was a real good salesman.  when the policy holder
would take out the coverage and when it would get down to the amount of
money they were wanting to take out the insurance for - say 50,000 or
100,000 dollars.  he would look at them and say, "you don't plan on
staying dead for very long - do you?"  

well, anyway, back to the death and dying.......

i will tell you my side of things.  i've faced my own death three times
so far.  i'm not afraid of dying.  it's going to happen, so big whoop.
i might as well enjoy the ride while i'm here.

so, i've already bought my grave site,  my head stone and i've picked
out my music that i want to be played.  haven't decided on what to be
buried it yet.  still looking around on that one.  i feel why should i
bother my family with this stuff.  it's my death and i should have my
say and what and where i want to be buried.

so,  your questions about this post aren't off the mark.

so, i will go back to what you first ask....

Summary: got any advice for those in the final stages, with perhaps a
few months left to live?

===> i would say.  enjoy life - make memories with the ones that you
love.  take pictures - lots of pictures while you still in good spirits
-because this will what they will have left tor remember you by.   tie
up any loose ends you can so as to not to burden anyone else with having
to make the decision.  this way, everyone will know what was done was
your wishes and there is a comfort in knowing that.

if you can still travel or if there is something that you've always
wanted to do in your life..... try to do it.

hope this has helped.

all the best....

~ curtis

knowledge is power - growing old is mandatory - growing wise is optional    
"Many more men die with prostate cancer than of it. Growing old is
invariably fatal. Prostate cancer is only sometimes so."
http://community.webtv.net/PALMER_ENT/doc

You failed to mention your age, latest PSA, geographical location (with
respect to hospitals and treatment centers).

Are you a veteran?   AL, VFW, DAV, AMVETS, and other similar organization
can help.
Veterans are entitled to free burial - including headstone - in any national
cemetary.

Are you on SSDI (Social Security Disability Insurance) and Medicare?  I was
53 when I retired on disability.

You mentioned "the state," and I assume you mean SSI (Supplimental Security
Income).  Is that correct?

The libraries and book stores contain many books along the lines of
"Death With Dignity". They range from the philosophical to the
practical, and from the religious to assisted suicide, and I plan to
read and/or skim many of them if and when my time approaches. It sounds
like your estate planning should include trying to shield your wife, if
possible, from your "negative estate" (aka debts). And it looks like
you're ready to face this problem head-on, which will serve you well.
Your wife needn't fear the administrative preparation -- with no estate
that shouldn't take long -- and maybe the books and friends can help
ease the emotional impact of the next few months and years.

Even those of us who hope they're cured know they may still face your
scenario. Please keep us informed of your findings, feelings, and
insights. And both of you must know you have our attention and our support.

I.P.

===>>I am sorry you find yourself in this situation.  But it is brave
of you to ask questions, and I hope it will be useful to you.
Apparently, the D-word is still taboo in most quarters, including the
doctor's office.  And even in some of these groups.  A man posted a
msg saying that he wished his doctors would "give him permission to
die."  Or at least be honest with him.  And, he was dismayed that he
did not see any patients writing about what the experience of dying is
like.

Later, the man wrote that he'd been deluged with responses --
offline.  I wonder if some people don't want to bring up the subject
of death because they might be accused of "pessimism" (not uncommon).

You can read about Tom's experiences @ an excellent blog on advanced
PC (advancedprostatecancer.net), which is sponsored by Malecare, as is
my own.  Look under "One Man's View" on August 23.  The man who writes
this blog, Joel Nowak, is in the same situtation as you.  And he is
asking himself the same questions you are.  (In one of the most recent
entries).  The writer is also knowledgeable about every detail of
treatment, news, etc.  And he writes every day.

But I believe things are changing.  I am seeing end-of-life issues
being discussed often in the paper now.

You might also want to look at a listserv called "The Circle" @
prostatepointers.org.  Here, many end-of-life issues are discussed.  A
woman named Wendy kept an online diary of the last stage of her
husband's illness.  Amazin
.)

How a person dies is entirely up to him but we all should realize that
how we live and die will leave memories for those left behind that
will last a lifetime.  Of course, we all want to leave good memories
but that's not always the case.  Here are two people I've known who
left me with vastly different perspectives.

The first was a guy, age 54, who had been fighting colon cancer for a
couple of years and losing.  The last six months he was a walking
(barely) corpse yet neither he nor his wife acknowledged death, never
discussed it with anyone and in fact maintained a positive but
unrealistic outlook the whole time.  The last time I saw him, he could
barely walk, he needed help getting out of a chair, he was a skeleton,
he had death written all over him yet he was talking about his plans
for re-doing his backyard among other things.  The topper was when he
showed me a brochure for a cruise he and his wife were going on in
another couple of months, all paid for, etc..  I thought at the time
there's something wrong with these people, they're never going on this
cruise.  He died two weeks later.  Am I selfish to feel cheated?  We
never laughed over the good times we had together, I never thanked him
for the otherwise very positive impact he had on my life, nothing was
allowed that hinted in any way about the possibility of pending death
- it was all business as usual.

The other person was a lady of similar age who had breast cancer, was
treated surgically and had made a full recovery.  About two years
later she and her husband had a huge barbeque at their home for all
their friends and family.  She spent the day being a gracious hostess,
talking with each person, sharing good times, lots of laughter with
nary a hint of anything wrong.  After she died a couple of months
later we realized then that she knew there had been a recurrence and
that she wanted to have one last good time with her friends and
family.

I know this is really about me and my reaction to these folks, and I
realize that neither one discussed the upcoming death but I can't help
it that my last memory of the grand lady was her laughter at her
barbeque and my last memory of the guy was the foolish futility of him
holding his cruise brochure.  When it comes my time I plan on a
barbeque and to hell with the cruise.

And by the way, here's to Hughie, a guy who knew where he was going
and who got there in a most admirable way.
Dave Perry