Sorry to hear about these results, Steve.  I'm not in the *really smart*
category in terms of advanced prostate cancer.... so I'll leave the
technical advice to those who are more qualified.  What I would like to say,
however, is how much I appreciate the person that you are here on this
list... always offering strength and support to those seeking answers.  You
do so much good for so many... and everyone here will be here anytime you
feel you need to lean... or *take*.  I have to believe that you will take
this new bit of adversity and, in true Steve Kramer style, turn it into the
strength you need to pull yourself through it.  You've got a long way yet to
travel.... so let's don't get too excited about the scratch and dent sale
yet!

Take care...
MikeH

Steve,

I'm truly sorry to hear about the rising PSA.

I don't know what kind of doctor is treating you right now.
If he's not a medical oncologist specializing in prostate
cancer, maybe it's time to find one of those and make
an appointment so you can ask the questions you have
raised and get a good picture of future options.

I presume you've still got long years before a crisis and
lots of time for research and decisions.  Maybe a modification
to your HT regimen is in order, e.g., maybe adding
finasteride or dutasteride or a combo of that and Casodex
again.  A serious honest-to-God specialist expert might
be able to help.

Also, keep your eye on the clinical trials that are starting
up.  The two that have most intrigued me are phenoxodiol
and the cancer vaccines - both of which seem to be
emerging from down under in Australia.

See: http://psa-rising.com/med/chemo/phenoxodiolPhase1_2_05.html
for info on phenoxodiol.  In addition to its positive effect on
cancer, it has also been shown in trials with ovarian cancer
to dramatically improve the response to chemotherapy.
Women who had exhausted chemotherapy took phenoxodiol
and found a huge jump in their response to chemo.

Keep on fighting Steve.  We're all rooting for you on this.

   Alan

From: skramer@cinci.rr.com (Steve Kramer)
Well, my friends... especially my really smart friends who have studied
advanced prostate cancer far more than I have.... when it comes to the
givers and takers here, I'm back among the needy.
By PSA came back at 0.132. I have had an up-and-down battle over the
last 2½ years. Basically, I've gone from .07 in October 2003 to .132
yesterday. Or, if you look at my lowest to highest, .05 in April 2004 to
132 yesterday. In other words, less the doubled in little over two
years or more than doubled in little less than two years. Let's just say
my doubling rate on Lupron is two years.
Let's also say that I'm still quite low at 13/100ths of a nanogram of
PSA.
And, for sake of argument, let's say my assay was with a different lab.
What can I expect? I know I have not had those three rising PSAs in a
row... which is nice.
When does my PCa officially go "refractive"? At what point are they
likely
to want to start chemo?
What is the average lifespan at that point? (keeping in mind that I've
always had 2012 in the pool).
Has anyone been to Batesville Casket's scratch and dent sale?

=========
well steve - having been down this path before.......

you DID ask, so here's the truth......

having a low psa like you have and still got is not refractive.

your question was.... When does my PCa officially go "refractive"?

that is the point that you will go in one of these days and your psa is
SHARPLY spike

say the sake of argument, let's take your .132 -   when you go in for
your next psa, it comes back 3.8 - then you have gone refractive.  it is
where the lupron is putting the hormone sensitive pca cells to sleep,
but the non-hormone pca cells have multiplied so much that they psa they
are producing is overriding the effects of the lupron.  

putting a book mark in this discussion for a second and take some time
to explain this.

the lupron is shuting down the LH and working on your body's functions
that normally produce the psa.  and the lupron shot will still keep
doing that and will still probably stay on them for that reason.

but doctors and oncs can't do anything about these non sensitive pca
cells and they will just keep slow growing and making psa.

now, removing the bookmark......

the psa for the non hormone sensitive pca cells will cause some of the
hormone sensitive cells to grow and divide, which in turn will cause the
same thing over and over again.

as a result - your psa may have been 3.8 and the next time, might be
7.0,  then 13, then, 25, etc, etc, etc.

in answer to your answer........What is the average lifespan at that
point?

the average lifespan at the point of hormone refractory has the range of
12 months to 48 months - with the average being 24 months.

my dad died at 24 months after his first psa jumped from less than .1 to
5.1.

his psa readings were taken in 4 month periods and were 5.1, 11, 22, 43
and he had a heart attack and died, but was passing blood in his urine
about two weeks before his death.

this is the ugly truth about the final stages of this disease.  nobody
wants to talk about it.  i didn't bring up the pain that go with all of
this, but as the psa climbs, usually it spreads pretty fast into the
spinal area of the low back and you will get low back pain to start with
as the nerves get pinched.   it will just plain hurt to sit or stand in
the vertical and put pressure on those nerves.

as to the 2012 in the pool.  i feel that you should beat it.  i'd pick a
later date.  my dad was given anything but lupron.  no casodex, zometa
wasn't invented yet as well as other new information on treating the
advanced pca.

you might go look around at the Batesville Casket's scratch and dent
sale, and kick the tires on the casket if you want, but i wouldn't get
serious about talking a deal with them right now.

here's a drink to many of those low's psa numbers of the future, steve
.......

~ 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

There are differing opinions on the definition of hrpc. There are also
several terms that are used in these discussions:
               Hormone-refractory PC
               Hormone-resistant PC
               Androgen-Independent PC

For this web site and for the support list we have chosen to use the
term "hormone-refractory prostate cancer" because it seems to be the
most commonly used designation for this stage of prostate cancer.

Dr. Stephen Strum coined the term "androgen-independent prostate
cancer," which he defines as follows:

"AIPC is defined as disease progression evidenced by a progressively
rising PSA (three consecutive rises of at least 10% each or three rises
that invovle an increase of 50% over the nadir PSA) or an increase in
tumor mass on bone scan, X-ray, CT scan or MRI despite a castrate level
of testosterone (T<20 ng/dl)."

He further goes on to say..."if a patient's PSA stops falling and begins
to rise on ADT(2) or ADT(3), if the T level is castrate, and if the
adrenal androgen precursors (DHEA-S and androstendione) are not low,
then AIPC is presumed present until proven otherwise. [Strum, S.B.,
"Important Principles in Chemotherapy: Regimens Treating
Androgen-Independent Prostate Cancer," PCRI INSIGHTS, pp. 10-16, Vol. 2,
No. 4, Dec. 1999.]  Note: this paragraph separates out the androgen
receptor mutation possibility and the resultant anti-androgen withdrawal
effect (declining PSA on stopping an anti-androgen.).
ADT(2) is androgen deprivation therapy with an LHRH agonist and Casodex
or Eulexin. ADT(3) is the same plus Proscar. T is testosterone.
     

Dr. Bob Leibowitz uses the term "hormone-resistant prostate cancer" as
follows:
"If, in spite of a testosterone level in the castrate range, the PSA is
rising, then we define this as hormone resistant prostate cancer. You
might still respond to other hormone manipulations, such as by adding an
antiandrogen, if you were on monotherapy alone."
[http://www.prostatepointers.org/prostate/leibowitz/leib20.html]

Dr. Leibowitz defines "hormone-refractory prostate cancer" as follows:
"If your PSA rises in spite of all hormone blocking agents (including
medicines like Nizoral, aminoglutethimide), then you have HRPC (hormone
refractory prostate cancer). Your disease may still respond to other
non-hormone treatments." [Ibid.]
In the August 1999 issue of the "Prostate Forum" newsletter, Dr. Charles
Myers seems to use the terms hormone-resistant and hormone-refractory
interchangeably.
For this web site, at the present time, we use the following working
definition of hormone-refractory to decide if an individual is eligible
to join the support group:

If an individual has three consecutive increases in his PSA while on
hormone blockade, and his testosterone is at a castrate level (<20
ng/dl), we consider that he is hormone-refractory.

This simplistic definition works because it is necessary to look at the
treatments, the PSA levels, and other tests to assess where he falls on
the continuum of partial to complete hormone-resistance. Usually it is a
doctor who has told the individual that he is hormone-refractory. Our
first recommendation to each of these individuals who joins our support
group is that he challenge the validity of that assessment by looking at
past tests to determine if the testosterone was indeed brought down to
castrate levels by the hormone therapy.

Since there is a limited (but growing) number of therapies available
following hormone blockade, the important issue is to assess which of
those therapies are available for consideration by the individual and
his doctor.

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

Steve, my heart cries for you.  Guess you'll slide out from under this
wave this time.
                             |\
                             | |
                             | |
                             | |
                             | |
               ))))))))      | |
             ((((    \       | |
              \\\.=<#-<#     | |
               \C     7      | |
 ,              \    -)      | |
 \\__         __.) (.__      | |
  \\\\ _    /'         `\    | |
   \_ '/   /  ,       .  \   | |
     \ \  /  /| '   ' |\  \  | |
      \ \/  / |       | \  \ | |
       \  /'  |       |  `\ \| |
        `'    |       |    \ | |
              |   .   |     \| |
              >-------<      | |\
             [~~~~~~~~~]     | | )
             [    L    ]     | \/
             [    |    ]     | |
             [____|____]     | |
              | /   \ |      | |
              ()     ()      | |
              ||     ||      | |-._
              ||     ||      | |_  `.
         jgs  )(     )(      | | `-. `.
             /==\   /==\     | |    `.;
            ooooO} {Ooooo    | |      `
            ~^^^~   ~^^^~    |/

I'm sure IP is right about the years ahead of you.  My Steve's dad was
diagnosed with a PSA past 500, and they didn't do anything, except
eventually for pain.  He seemed okay to me for seven years, then at the
end it was pretty fast.  God, it seems like 2000 was only the other
day, and that's how long you've been doing this.  Wish I knew a cure.
best wishes,
laurel

Steve,
Damn, I'm truly sorry to hear this. I can only hope it goes back down with your
subsequent tests.
KenA
====

Actually, Steve, according to this you are not in the worst shape.  I
just got to the part about Rising PSA after ADT.  Your nadir was <.2,
Gleason <8.  The only thing I can't tell is your pre-ADT doubling time,
but if it was >3 months then it looks like you need to worry more about
jaywalking.
http://mediwire.skyscape.com/main/Default.aspx?P=Content&ArticleID=180313

I like this quote "a new group of patients with only biochemical
evidence of disease and no clear avenue for its management" like I like
a stubbed toe.  They talk as if there is a "clear avenue for
management" of PCa with positive biopsy cores....

laurel

<snip>
I'd be getting some shorter PSA testing intervals done by another path
lab to see if it's actually rising, plus compare any differences
between labs.
Then I'd be looking to get a PET scan, if you have access to one. It
will show up very small mets, if you have them and provide a basis for
a different treatment regime.
Your numbers are still too low to cause great concern, but vigilant
more frequent monitoring should help you plan your next phase of
treatment, if an upward trend is still constant after another 3-4 PSA
tests.
I'm not aware of your treatment centre, but if you don't feel you're
getting enough attention, go see other Medical and Radiation
Oncologists.
There are a number of Treatment Options still open prior to Chemo, but
you need some advice which I cannot provide, but the Specialists
should.

I'd like to see you bite the bullet on this and kick it's a.s!! You
have the sand to do it!!



-- Reader to complete...
-- Please reply to this ng as my email adress is fake:

-- Regards

-- CC

Steve,

You were there for me when I started this journey.

Thanks!

You're a bit up the road, but many of us will eventually have to climb
that hill, and we'll all be better for those of you who have gone
before and cleared the path.

You're a young man, significantly more so than many of us. You are not,
and can't be, complacent or resigned. You'll get out there, find the
alternatives, and keep your vorpal sword going snicker snack.

You're gonna loose that 2012 bet! I wouldn't even take a wager on 2022!
My bet is I'll be plowing that pearly gate road for you and will be
welcoming you to the flat and easy  paved road of the hereafter.

Things are changing rapidly. Keep you ear to the ground and sign up for
every trail you can find.

I  give regular presentations these days. Some specifics on PCa, but
mostly on ways to maintain a positive attitude in the face of the
Cancer Beast. You are a role model, You own your disease. You've made
peace with any options you have and any alternatives you may have to
face. You've got your hands firmly on you life's steering wheel and
your foot fully on the accelerator. No brakes needed.

I don't know much about the details of your case other than your
regualrly posted stats. One I just read was what I interpreted as a
weight of 300 lbs. I don't know how tall you are, but at 300# it
doesn't really matter. I am 6'3"" and weighed slightly over 300  a
couple of years ago. I figured if I could deal with the Cancer Beast I
could deal with the Fat Monster. Both can be killers. I'm now under
200# (my uro says I'm too skinny), and feel great. Energy and
capability up the wazoo. I can't explain it to someone who hasn't
experienced it. Here's a rational that might make sense to you. Cancer
is a disease that will, among other things flourish under many
sitiuations that stress the body. It steals energy. making already
stressed organs even more susceptible. Being heavy is a real and
signficant stress on the body. If you are obsese, you have symptoms. I
did. I just didn't recognize them as symptoms of a disease. I just
"couldn't do certain things" which was an excuse for denying that
"doing those things" hurt, or overstressed a system that should be able
to do them easily. Symptoms, disease symptoms.

You've battled cancer. Fight onward.

If I misineterpreted your post then tell me to shut up and call me a
few dirty names. I'll bend over...

The best to you Steve, and thanks again.

Steve, you started out your post with...

"Well, my friends"

and you're RIGHT!

We're ALL your friends and appreciate the help and guidance that you've
given us.

The smarter guys have told you WHY you're gonna be around here for a
long, long time.

I just wanna tell you that we'll be here for anything that you might
want or need.

(This of course excludes sexual favors :-)

Ron B.

Chicago

Hi Steve...From all of your posts I see you as a fighter with some
attitude and a sense of humor.  It has served you well to this point,
and I suspect that combination will continue to serve you well.  You
have already received lots of good advice, at the top of the list was
the suggestion to hook up with a good oncologist and to begin to
measure your PSA at shorter (monthly) intervals.  Have you been
measuring your T up to this point, if so, what does it indicate?
Someone also suggested trying ADT3, that's probably what I would do,
maybe swapping  some other LHRH analogue (Zoladex, Eligard) in place of
the Lupron you've been taking.  Trying estrogen therapy (easy, cheap
and painless) instead of, or after, ADT3 might also be a reasonable
step.  There is some good information on estrogen patch therapy at the
following PSA Rising link:

http://psa-rising.com/med/hormonal/estradiolpatch5.html

I don't see estrogen therapy discussed much on this list, but it is
discussed quite a bit on ther PCa lists.  Even if your cells are no
longer reponsive to ADT they may still respond to estrogen.  Again, all
of this needs to be done with the guidance of a good oncologist.

Here's a short paragraph Dr. Myers wrote about second line hormonal
therapy:
"Stage II: Second line hormonal therapy.

At this point, the patient has a PSA that is no longer declining. We
immediately stop Casodex and switch to second line hormonal therapy.
This can involve ketoconazole 200 mg every 8 hours, transdermal
estrogen patches once a week or a range of other options. Again, we
follow the PSA and other measures of cancer response. If it becomes
clear that second line hormonal therapy is not making significant
progress, we
rapidly switch to Stage III, chemotherapy."

Just another word on ketoconazole, it is a widely practiced "next step"
after ADT stops providing a response and usually works for a period of
time.

Finally, this might be a good time to collect some baseline data: T,
PAP, bone density if you haven't already.

Keep the humor and 'tude going, you still have a long way to go...Best
wishes and good health, Ron

Steve, whatever harsh words may have passed between us in the past, I
am truly sorry to see those numbers drifting upwards. Let's hope that
it takes a *really* long time to get to a level where you really need
to start sweating.

Steve:

You are in my thoughts. You have helped me (and many others) with your
insightful posts in more ways than you can ever imagine. Although I do
not know you personally, I feel as if I do. I sincerely hope that all
works out well for you in your treatments and may you live well and way
beyond that 2015 cure date to be finally free of all disease.

B.A.

Steve, I'm a relative newbie here, but I want to extend my good wishes and
echo the sentiment of so many others.  With just a few words, you have
helped me, that's for sure.  Should I get to a place where I can help
others, I can only hope it be with your demeanor and grace.  Good fortune
and many more blessings to you.  -RonL

Steve, as an APC guy, I would not worry too much yet. As you know the lowest
my PSA ever was 0.2 last June, then went to 0.4 in August. The first concern
was 1.7 in September and real concern in October at 1.9. One more rise and I
would be on either Cyotax or Genetic Vaccine. From mid September to mid
December, I had a PSA every two weeks. three times at 1.8, then 1.7, then
1.6, and then 1.7. I figured the next rise would trigger chemo.

You might remember that there where no concerns until my PSA went ballastic
to 32.4 in May of 2004. Started Lupron immediately and then started chemo in
July with quarterly bone scans ever since.

Then in January it dropped to 0.8 and then four weeks later 0.2. Now PSA
test is every six weeks.

As you know my Medical Oncologist has specialized in Prostate Cancer
research for 24 years. He's happy; I am happy. His attitude is that he has
at ready hand 8-10 bullets to fire and that should at least take me another
ten years. Every year new bullets are added to the arsenal. So it really is
a waiting game for us APC guys.

I do not know if there is a research facility close by to you. That is a
possibility to look into Class 2 Trials. (No placebos in Class 2)

BTW, I have not seen my Urologist since he diagnosed cancer in March of 2002
and last saw one six months after my new Urologist implanted my seeds with
the Radiation Oncologist.

Anyway, I'd hold off on the scratch and dent sale. You have plenty of time
years down the road. And I bet you will have plenty of more after 2012.

Mike