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Medical Forum / Diseases and Disorders / Prostate Cancer / March 2008

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Med Onc Visit at 11AM

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Carl Hunt Hays III - 25 Mar 2008 13:23 GMT
Gentlemen-

I'm in Baltimore this morning to see Dr. Carducci about my advancing disease.
Recent bone scan looked relatively clean with possibly one spot on my spine.
Recent CT scan also looks good.

PSA has been doubling rapidly (now at 18.08 up from 13.5 a month earlier)
I did not respond to Casodex and have discontunued it.

I imagine it will be taxotere + clinical trial that will be suggested
this morning.

Any thoughts/comments  much appreciated.

I have reservations about a fatiguing therapy that might only give me 3
months more life.

                Best to all-     Carl

PSA 19 07/2004 @ 55
12 needle Biopsy 07/2004 G7  T2c
RRP 09/2004 @ Johns Hopkins by Dr. Pat Walsh  positive margins
G8 in 3 of 6 left and 4 of 8 right sampled
Post Op PSA 19
30 mg Lupron began 12/2004 and every 4 mo after
PSA  .069 -.079- 1.15-1.35- 2.23-4-7.18-13.70
50 mg Casodex added daily 12/07
PSA 02/07   13.70 @age 58
Casodex discontinued 2/07
PSA 18.08  3/08
Seeking advice from Carducci at Johns Hopkins today
tarhoosier@carolina.rr.com - 25 Mar 2008 15:26 GMT
> Gentlemen-
>
[quoted text clipped - 27 lines]
> PSA 18.08  3/08
> Seeking advice from Carducci at Johns Hopkins today

Carl:

You have some of the best in the world on your team. Regarding Taxol
therapy, the Phase III trial was on men who had failed all other
treatments and had significant metastatic disease with measurable bone
mets, high psa, and many with symptoms such as pain, urethral
strictures and so on. Men far down the path from you. Among these men
about 40% failed Taxol therapy, or responded only briefly. The other
60% or so survived a median of nearly 3 years, meaning half of those
who responded lived for quite a while. The significant number of non-
responders pulls the overall median results down to a few months
longer than for mitoxantrone. For men with significantly less tumor
burden (you) then response rate is usually stronger than seen in those
who were in the trial. I extrapolate from the numbers found in the
Trial report to make my comments here. Please ask your team about
this.
Best of luck!
Steve Jordan - 25 Mar 2008 18:31 GMT
On March 25, tarhoosier replied to Carl, in pertinent part:

> Regarding Taxol
> therapy, the Phase III trial was on men who had failed all other
> treatments and had significant metastatic disease with measurable bone
> mets, high psa, and many with symptoms such as pain, urethral
> strictures and so on.

(sic: Taxotere is docetaxel. Taxol is paclitaxel)

Those men were true heroes. They knew that they had little hope, yet
proceeded to volunteer in order to help others, such as Carl. And me
when the time comes.

I have looked into the continual drumbeat of "only a few months" and
learned just what Tar wrote. As my med onc put it, "they were on their
last legs."

This is from the archives of the Prostate Cancer Research Institute
(PCRI): "Taxotere®-Based Regimens Improve Survival in Advanced Prostate
Cancer"

"One clinical trial presented at ASCO (2004 meeting) was a direct
comparison of Taxotere®/prednisone to the historical standard treatment
consisting of the chemotherapy agent mitoxantrone (Novantrone®) plus
prednisone. This trial included 1,006 patients who had
hormone-refractory prostate cancer. Approximately half of the patients
were treated with Taxotere®/prednisone, and the other half were treated
with mitoxantrone/prednisone. Patients treated with Taxotere® received
therapy either once per week, or once every 3 weeks at different doses.
Patients treated on the Taxotere® regimen that was once every 3 weeks
had superior outcomes to those treated with Taxotere® once per week. The
average survival for patients following treatment with chemotherapy was
nearly 19 months for those treated with Taxotere®/prednisone (every 3
weeks), compared to 16.5 months for those treated with
mitoxantrone/prednisone. Pain was reduced in approximately 35% of
patients treated with Taxotere®/prednisone every 3 weeks, compared to
22% of patients treated with mitoxantrone/prednisone. The most common
severe side effect, low white blood cell levels, occurred more often in
patients treated with Taxotere®/prednisone than those treated with
mitoxantrone/prednisone."

Regards,

Steve J
Carl Hunt Hays III - 25 Mar 2008 22:49 GMT
> On March 25, tarhoosier replied to Carl, in pertinent part:
>
[quoted text clipped - 41 lines]
>
> Steve J

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

Dear Steve and Group-

You always come through with most valuable information my friends. I
remain most grateful.

I saw Dr. Carducci this morning and he suggested:

Continue Lupron for life
Get Psa exactly 6 weeks after discontinuing Casodex 50 mg ( in two weeks)
to see if it has caused PSA to drop
XRT for painful sites
Consider:
Nilutamide
Ketoconazole
Docetaxael

He also cleared me for two Phase 1 clinical trials:

http://clinicaltrials.gov/show/NCT00326586

or

http://www.hopkinskimmelcancercenter.org/clinicaltrials/protocol.cfm?pID=J0749

Dr. Carducci is the second Med Onc to answer the question " Could I be
dead in 12-18 months if I do nothing"  with the word  "possibly".  
How's that for a 59th birthday present!  Gee wiz... My urologist said
the same.

It's enough to make a gent take up tap dancing, I tell you.

What's a fella to do?   -  Carl

Signature

PSA 19 07/2004 @ 55
12 needle Biopsy 07/2004 G7  T2c
RRP 09/2004 @ Johns Hopkins by Dr. Pat Walsh  positive margins
G8 in 3 of 6 left and 4 of 8 right sampled
Post Op PSA 19
30 mg Lupron began 12/2004 and every 4 mo after
PSA  .069 -.079- 1.15-1.35- 2.23-4-7.18-13.70
50 mg Casodex added daily 12/07
PSA 02/07   13.70 @age 58
Casodex discontinued 2/07
PSA 18.08  3/08
Saw Dr. Assikis in Atlanta and
Dr. Carducci at Johns Hopkins-Baltimore 3/08

Steve Jordan - 25 Mar 2008 23:45 GMT
On March 25, Carl replied:

(snip)

> I saw Dr. Carducci this morning and he suggested:
>
[quoted text clipped - 6 lines]
> Ketoconazole
> Docetaxael

And I'd recommend getting an ultrasensitive PSA test on a monthly cycle
in order to track closely what if anything is happening.

Nilutamide (Nilandron) is an antiandrogen, an androgen receptor blocker,
similar to Casodex. Its "label" use is in combination with surgical
castration, per www.rxlist.com Note the side effects (SEs) when given
along with leuprolide (Lupron).

The "label" use of ketoconazole (Nizoral) is as an antifungal. However,
it is known to reduce both testicular and adrenal production of
testosterone and its precursors. It can be hazardous (what can't?) and
reference to www.rxlist.com will provide details. On the PCRI site at
http://www.prostate-cancer.org/education/andeprv/Lam_HDK.html
is an essay entitled "High Dose Ketoconazole Plus Hydrocortisone (HDK+
HC)" on its use in PCa tx by one of the best medics in the business,

Docetaxel (Taxotere) is the only med that directly attacks cancer cells.
Info on the rxlist.com site.

I pass along this information so that Carl can learn what to expect and
become an empowered patient.

> He also cleared me for two Phase 1 clinical trials:
>
[quoted text clipped - 3 lines]
>
> http://www.hopkinskimmelcancercenter.org/clinicaltrials/protocol.cfm?pID=J0749 

I note that the trial is very small (80) and that there is no certainty
whether Carl would be randomized to the treatment arm or the placebo
arm. Something to think about. Also, this is a Phase I study, which is
primarily designed to determine a safe dosage level.

Here are the defined phases:

"Study Phase

Most clinical trials are designated as phase I, II, III, or IV, based on
the type of questions that study is seeking to answer:

In Phase I clinical trials, researchers test a new drug or treatment in
a small group of people (20-80) for the first time to evaluate its
safety, determine a safe dosage range, and identify side effects.

In Phase II clinical trials, the study drug or treatment is given to a
larger group of people (100-300) to see if it is effective and to
further evaluate its safety.

In Phase III clinical trials, the study drug or treatment is given to
large groups of people (1,000-3,000) to confirm its effectiveness,
monitor side effects, compare it to commonly used treatments, and
collect information that will allow the drug or treatment to be used safely.

In Phase IV clinical trials, post marketing studies delineate additional
information including the drug's risks, benefits, and optimal use.

These phases are defined by the Food and Drug Administration in the Code
of Federal Regulations."

> Dr. Carducci is the second Med Onc to answer the question " Could I be
> dead in 12-18 months if I do nothing"  with the word  "possibly".  How's
> that for a 59th birthday present!  Gee wiz... My urologist said the same.

The reported doubling time is not a pretty prospect.

> What's a fella to do?

I'd take steps to interrupt the process without undue delay. But be sure
that the steps are likely to produce results -- as nearly as anyone can
be sure in this business.

Here's a source of guidance: The Us Too International website Physician
to Patient at http://www.prostatepointers.org/mlist/mlist.html
Posting the Prostate Cancer Digest should result very shortly is a
response from at least one of the very best PCa specialists on the
planet. Free.

I do know this much: it saved my life.

Please let us know how it goes.

Regards,

Steve J

"We must tailor the treatment to the nature of the disease. We must
listen to the biology."
-- Stephen B. Strum, MD
Medical Oncologist
PCa Specialist
Carl Hunt Hays III - 25 Mar 2008 22:06 GMT
>> Gentlemen-
>>
[quoted text clipped - 45 lines]
> this.
> Best of luck!

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

Kindest thanks for this input - Carl

PSA 19 07/2004 @ 55
12 needle Biopsy 07/2004 G7  T2c
RRP 09/2004 @ Johns Hopkins by Dr. Pat Walsh  positive margins
G8 in 3 of 6 left and 4 of 8 right sampled
Post Op PSA 19
30 mg Lupron began 12/2004 and every 4 mo after
PSA  .069 -.079- 1.15-1.35- 2.23-4-7.18-13.70
50 mg Casodex added daily 12/07
PSA 02/07   13.70 @age 58
Casodex discontinued 2/07
PSA 18.08  3/08
tarhoosier@carolina.rr.com - 25 Mar 2008 15:58 GMT
> Gentlemen-
>
[quoted text clipped - 27 lines]
> PSA 18.08  3/08
> Seeking advice from Carducci at Johns Hopkins today

On short notice, this is of support.
http://www.prostate-cancer.org/education/andind/Guess_ChemotherapyForPC.html
Alan Meyer - 26 Mar 2008 00:20 GMT
On Mar 25, 10:58 am, tarhoos...@carolina.rr.com wrote:
> On short notice, this is of support.
> http://www.prostate-cancer.org/education/andind/Guess_ChemotherapyFor...

Carl,

I looked at the web page recommended by tarhoosier.  It's
excellent, very worth reading.

I'm not a doctor or an expert of any kind.  What follows are just
the speculations of a layman.  So please do not think of them as
in any way authoritative.

But, forging on ...

It is my impression that the course of the disease, and the
response to any particular therapy, can vary a great deal from
one person to the next.

Docetaxel may do no good at all, zero.  On the other hand
however, it may add many months or even years to your life.  It's
a crap shoot.  There's no way to know how sensitive a particular
cancer is until you try it.

In general, chemotherapy works by killing rapidly dividing cells.
That is why it is less effective in prostate cancer than in some
other cancers.  Because PCa is relatively slow growing, there are
fewer cells dividing and multiplying at any given time than with
fast growing cancers.

Now if that's true, men like you Carl may actually derive more
benefit from chemo than the average patient.  The very high PSA
doubling rate you are experiencing may indicate that you have an
exceptionally large number of tumor cells dividing at any one
time and hence susceptible to chemo.  This is something to ask
your doctor about.

The treatments Dr. Carducci recommended comprise what is often
called "second line hormone therapy".  Surprisingly, they quite
often work after "primary" hormone therapy has stopped working.
As with everything else, whether they work or not is an
individual thing.  Some men get great benefit from them, some get
none, and a few have unacceptable side effects.  I think they are
worth trying.

A friend of mine with advanced, metastatic PCa (PSA 500 before
treatment started) went hormone refractory over a year ago.  He
has been treated by Dr. Charles "Snuffy" Myers, a medical
oncologist in Virginia.  Dr. Myers has been trying almost
everything.  He hasn't done any chemo yet.  That's still in
reserve.  But he has tried second line HT, very large doses of
pomegranate extract and some vitamins, and now Revlimid, a
thalidomide analog.  Each time the PSA goes up, Dr. Myers tries
something new.  Some of the things haven't seem to have done
anything, but a number of them have.

One year later, my friend, who is 71 years old, is still walking
around and still living a relatively normal life.  He still has
no symptoms.  His PSA has not yet gotten above 18 (IIRC) before
being checked or brought down again.

So I think if it were me, I'd do what my friend did.  I'd try
lots of treatments.  I'd find an aggressive doctor who would work
with me to keep trying new things.

So far, there still don't seem to be any magic bullets.  But it
may be that by battling the disease with one treatment after
another, you can get an extra year or two.

Finally, although you're facing death at an earlier age than most
of us, I think it's important to remember that you aren't dead
yet.  I don't think it does any good to be so depressed over
dying that you wish you were dead.  If that was the right
attitude, we'd all do well to do ourselves in as soon as we
learned that all men are mortal.

You may have one year of life left.  You may have more.  Whatever
you have, try to make the best of it.  Make financial
preparations, gather up diaries or photos or keepsakes, etc., and
prepare to pass them on.  Maybe write some letters or make a
sound or video recording for your children and grandchildren, if
you have them.  There is a recent posting by I.P. with more good
suggestions.

Do what you can for your family now, while you can do it.  Make
things as easy for them as you can.

And beyond all that, don't forget to watch those favorite movies
you've always loved, or listen to your favorite music, or read
your favorite books, or eat at your favorite restaurant, or visit
your favorite friends, or take that vacation to the place you've
always wanted to see but never made time for.  And of course,
spend some time with your loved ones.  They'll still be here
after you're gone, remembering you and carrying on for you.

Life ain't over till it's over.  Let's live while we can.

Best of luck.

   Alan
Bob C. - 26 Mar 2008 00:45 GMT
> Gentlemen-

> I have reservations about a fatiguing therapy that might only give me 3
> months more life.
>
>                 Best to all-     Carl

Carl, as you have been fighting this battle for awhile now, I am sure
that this is not the first time you have been discouraged. My thought is
why stop fighting now. Sure, the next treatment may only give you an
additional 3 months, or maybe less. But then again it might give you
some number of years, and then on to who knows what other treatment(s)
for who knows how many more years.

As to your doctors reply regarding time left, my first doctor gave me a
50-50 chance of still being here in two years WITH treatments, and that
was in  about October of 2000 when my initial psa was 55. The odds  do
not get better with each year, so I figure that by now I must be down to
really really slim odds of seeing 2009, but I sure plan on it. A lot of
guys have gone from one treatment to another, sometimes having one or
more fail and then just going on to another one and having success.
There are so many clinical trials going on now, phase 1,2 and 3,  that I
am sure you would be a candidate for a number of them. I wish you really
good luck, and I hope we hear of good results from you as you continue
your battle.  For a long time.

And no, I have not seen that first doctor again since that visit.
I.P. Freely - 26 Mar 2008 02:21 GMT
> The odds  do
> not get better with each year, so I figure that by now I must be down to
> really really slim odds of seeing 2009

Actually, they do, so take heart. My odds of making 10 are much better
after three years with virtually no PSA then than they were fresh out of
the OR. Heck, if I can make 9 w/o PSA, my odds of making 10 will be
pretty close to 1.0. Every little bit helps.

I.P.
DominicM - 26 Mar 2008 02:42 GMT
> > The odds  do
> > not get better with each year, so I figure that by now I must be down to
[quoted text clipped - 6 lines]
>
> I.P.

Carl.... Johns Hopkins also has some other promising trials that you
may want to ask Dr. Carducci about. One is Revlimid .  He can tell you
appropriateness for your situation.

Hang in there. Good luck. Dominic
kh - 26 Mar 2008 02:48 GMT
> Recent bone scan looked relatively clean with possibly one spot on my spine.
> Recent CT scan also looks good.
>
> PSA has been doubling rapidly (now at 18.08 up from 13.5 a month earlier)
> I did not respond to Casodex and have discontunued it.

> I have reservations about a fatiguing therapy that might only give me 3
> months more life.

Carl, my brother, read my recent posts on my adventures with external
radiation at Inova.   I've got a 30 day doubling time and when my PSA
hit 21 this January, mets in my spine had me unable to get up from
bed.  I was in serious trouble.

I'm better now and look forward to starting the taxotere IL-6 antigen
trial at JHU next month.   Both JHU and Inova's oncologists are
hopeful about the taxotere.

I have no intention of getting only 3 more months.   Even 3 years
isn't my goal.   My goal is to beat this.

I realize that there will be setbacks but I will keep working with the
docs at Inova and JHU, my A-Team.

I'll do all the "should help" stuff that has a low or zero cost,
pomegranate, blueberry, green tea with some ginger. Tofu. Vitamin-D.
Any tips that I read here, that pass the I.P.-Steve Jordan-Alan M.
cynic filter, I'll give it a try.

I'm building my business and adding to my skills so that I can improve
my financial posture.   Initially the silver bullet may be expensive,
I want the freedom of saying, "Fifty grand? Sure. Lets start now and
I'll battle my insurance company later."   Yesterday and today, I
passed two different IT certification tests which might lead to more
work or a higher billing rate.

I'm still weak from the radiation and have muscle wasting from the
decadron.  I've started walking and climbing stairs.   I intend to be
as strong as possible, when I get that first hit of taxotere.

I'm also whooping it up.  Had a grand time at a really fancy
waterfront estate, crabcakes and asparagus with fresh berries for
dessert served in the formal dining room.   Then we went down to the
secondary garage, the empty one with the piles of bagged compost, and
threw darts for an hour.

Beating the PCa is a long term goal.   There's no way to do it now but
Steve K heard that a silver bullet MIGHT be available by 2012.  The
rate of technological change is incredible, so who knows.

The other thing that I keep mulling over is "PSA".  We have a cancer
with a "specific" antigen.   You don't hear about a Breast Cancer
Specific Antigen, Skin Cancer Specific Antigen, or Lung Cancer
Specific Antigen.

This reveals my ignorance but "specific" antigen suggests that it
would be possible to engineer something that takes it out.   I think
that's how PROVENGE and GVAX are supposed to work.

If you could make something like that, there shouldn't be a problem
with unleashing it on prostate tissue, which you don't need to live.
Lung tissue, skin, that's another matter.

-kh  You got more good times ahead.
Steve Kramer - 28 Mar 2008 00:07 GMT
> Beating the PCa is a long term goal.   There's no way to do it now but
> Steve K heard that a silver bullet MIGHT be available by 2012.  The
> rate of technological change is incredible, so who knows.

Actually, it was 2015, which is just outside my window of opportunity (I
think).

However, more recently, I was told that they no longer feel that way.  While
the genome project was far ahead of schedule and the identification of the
offending DNA strands came much sooner than expected, the cure is lagging.
Last I heard (about three months ago, I think) is that they hope to reduce
it to a chronic disease by then rather than a fatal one.  :-(

Signature

PSA 16 10/17/2000 @ 46
Biopsy 11/01/2000 G7 (3+4), T2c
RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins
PSA  <.1  <.1  <.1  .27  .37  .75            PSAD 0.19 years
EBRT 05-07/2002 @ 47
PSA  .34 .22 .15 .21 .32                       PSAD .056 years
Lupron 07/03 (1 mo) 8/03 and every 4 months there after
PSA  .07 .05 .06 .09 .08 .132 .145       PSAD 1.4 years
Casodex added daily 07/06
PSA <0.04, <0.05, <0.04, <0.04, <0.1  2/12/08
Non Illegitimi Carborundum

Gourd Dancer - 26 Mar 2008 06:51 GMT
Carl get off this 3 more months craps; you are not over 70!!!

First of all you have a 20% shot at PSA reduction with what is called
Casodex Withdrawal Syndrome; ie, 20% of people who stop Casodex experience a
reduction in PSA in six weeks.

Second, I just turned 61. Four years ago I had a PSA of 32.4 with two mets
to L2 & T3. Today. I am undetectable and mets are gone. I went on a chemo
trial of three cycles each of doxorubin with ketoconazole and paclitaxel
with estramustine, plus 30 mg of prednisone a day for six months.

Third, you are a statistic of one.

Listen to your medical oncologist, get aggressive and you will see many more
years.

Gourd Dancer

> Gentlemen-
>
[quoted text clipped - 29 lines]
> PSA 18.08  3/08
> Seeking advice from Carducci at Johns Hopkins today
Steve Kramer - 27 Mar 2008 21:44 GMT
> Gentlemen-

> I have reservations about a fatiguing therapy that might only give me 3
> months more life.

I always swore I'd never go through that which my father did with chemo.
But, having watched my BIL handle newer stuff well with his lymphoma and a
subordinate of mine handle it well with his colon cancer, I'm of a mind to
try it when my time comes.  I can always stop.

Signature

PSA 16 10/17/2000 @ 46
Biopsy 11/01/2000 G7 (3+4), T2c
RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins
PSA  <.1  <.1  <.1  .27  .37  .75            PSAD 0.19 years
EBRT 05-07/2002 @ 47
PSA  .34 .22 .15 .21 .32                       PSAD .056 years
Lupron 07/03 (1 mo) 8/03 and every 4 months there after
PSA  .07 .05 .06 .09 .08 .132 .145       PSAD 1.4 years
Casodex added daily 07/06
PSA <0.04, <0.05, <0.04, <0.04, <0.1  2/12/08
Non Illegitimi Carborundum


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