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Clarence Crow - 02 Sep 2005 22:38 GMT

HeY guys

After sloshing around in the doldrums post HDRB for 9 wks, I've just
completed a 5 day week of work. It's good to be back in the real world
with some social contact again even if 50% of the persons are
A_holes:) (keeps me on my toes, fending off the back-stabbing "team
players" LOL.)

Hope you're all managing well. I'm peeing about 8/10, now awaiting a
Nov 10 appointment with my Lamborghini-driving Uro to discuss removal
of a bladder cyst near the urethra plus another TURP. (didn't have to
self-catherise, even tho' someone on here posted an excellent DIY
procedure).

My 2nd last shot of Lucrin (ADT) happens Oct 10, when I'll get an
update on PSA and T levels (but still will be cloaked by the ADT).

A buddy of mine who lives 100 miles down the road had the same
treatment as me a full 1 year prior. He's just got the T flowing back
into him now and his PSA has "bounced" from <0.01 to 0.01. The Rad Onc
said no cause for concern as the sensitivity of the instruments at the
Path Lab in that range was dubious.

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

-- Regards

-- CC

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Stephen Jordan - 03 Sep 2005 00:37 GMT

(snip update)

> My 2nd last shot of Lucrin (ADT) happens Oct 10, when I'll get an
> update on PSA and T levels (but still will be cloaked by the ADT).

Well, the T will be whatever it is. What's wanted is as low a score as
possible.

As for the PSA being "cloaked" by the ADT, I don't think I'd put it quite
that way. After all, if PSA were rising while one is on ADT, one is in
serious trouble. When the ADT is stopped, the PSA will very likely rise.
The point is whether it rises too much too fast.

I have instructed my med onc that I have changed my mind; I will not stop
ADT with the October injection. I have decided, for no reason other than
prudence, to continue ADT through April, 2006. I'll then decide whether to
stop it. So far, eight straight months of <0.01. Before that, it was
undetectable within the limits of the test protocol then in use.

Keep an eye on BMD (bone mass density). I have been taking Actonel 35 mg q
weekly for months. Recently had two Pyrilinks-D urine tests (second to
confirm the first), and discovered that the Actonel is not successful, bone
resorption is too high. I expect to start Zometa infusions, shortly. That
should solve the problem.

In November, I'll undergo a nuclear bone scan to see whether any metastases
have developed since the last test in September, 2003. If so, I would
consider it to be a very serious situation. Zometa can help, though.

A bit of explanatory background: I began this battle with a biopsy finding
of Gleason 4+5=9 in five of six specimens on one side of my prostate. There
was also a smaller Gleason 4+4=8 tumor on the other side. So I watch
everything, and supervise every aspect of my case.

> A buddy of mine who lives 100 miles down the road had the same
> treatment as me a full 1 year prior. He's just got the T flowing back
> into him now and his PSA has "bounced" from <0.01 to 0.01. The Rad Onc
> said no cause for concern as the sensitivity of the instruments at the
> Path Lab in that range was dubious.

I reckon that the rad onc has a point.

Regards,

Steve J

"Facts are stubborn things; and whatever may be our wishes, our
inclination, or the dictates of our passions, they cannot alter the state
of facts and evidence."
--John Adams

Reply to this Message

Clarence Crow - 03 Sep 2005 23:01 GMT

>> My 2nd last shot of Lucrin (ADT) happens Oct 10, when I'll get an
>> update on PSA and T levels (but still will be cloaked by the ADT).
>
>Well, the T will be whatever it is. What's wanted is as low a score as
>possible.

The previous 2 T levels were < detectable on the instruments here.

>As for the PSA being "cloaked" by the ADT, I don't think I'd put it quite
>that way. After all, if PSA were rising while one is on ADT, one is in
>serious trouble. When the ADT is stopped, the PSA will very likely rise.
>The point is whether it rises too much too fast.

The previous PSA post EBRT & just pre HDRB in July 2005was 0.02...down
in stages from 21.0 at program entry end October 2005.
I'm fully aware that somewhere mid to late 2006 when the ADT hormones
leave my body, I'll experience a slight PSA bounce which will be
monitored over 3 monthly periods to alert if there's a PSADT.
Hopefully it will stay the same or decline as the T returns. Then I'll
know how good the EBRT and HDRB worked. I'll also be getting DREs at
those times.

>I have instructed my med onc that I have changed my mind; I will not stop
>ADT with the October injection. I have decided, for no reason other than
>prudence, to continue ADT through April, 2006. I'll then decide whether to
>stop it. So far, eight straight months of <0.01. Before that, it was
>undetectable within the limits of the test protocol then in use.

Somewhere I read that ADT becomes refractory after 18 months, so you
should complete it within that window.

>Keep an eye on BMD (bone mass density). I have been taking Actonel 35 mg q
>weekly for months. Recently had two Pyrilinks-D urine tests (second to
>confirm the first), and discovered that the Actonel is not successful, bone
>resorption is too high. I expect to start Zometa infusions, shortly. That
>should solve the problem.

The Professor dismissed the bone scan at the beginning because too
many persons were getting them, causing the program to bog down
timewise, plus returning negative results thereby wasting money!
If you presented with Osteo-Porosis and/or recent fractures possibly
attributable to that, you got a BMD scan. However, if, like me, you
only had Osteo-Arthritis, you didn't! He further said Zometa or any
other Bone Mineral Density supplement would not help the symptoms of
OA!

>In November, I'll undergo a nuclear bone scan to see whether any metastases
>have developed since the last test in September, 2003. If so, I would
>consider it to be a very serious situation. Zometa can help, though.

The prof also said the program did not cover any future full body
nuclear bone scans and they could be detrimental to the patient, by
increased exposure to nuclear trace elements.

>A bit of explanatory background: I began this battle with a biopsy finding
>of Gleason 4+5=9 in five of six specimens on one side of my prostate. There
>was also a smaller Gleason 4+4=8 tumor on the other side. So I watch
>everything, and supervise every aspect of my case.

<snip>

I appreciate your concern over the G9s and my yank buddy down the
road, is also very leery of his (1 only) G9. He seems to be obsessed
with it and has already asked about going on Taxotere. He's doing OK
so far with PSA of 0.01, but watching for any PSADT. When the PSA
readings are so low, it's difficult to establish a benchmark "bounce"
reading to determine the PSADT. I believe here they work up near PSA
1.0 as a benchmark and then monitor the PSADT from there.

I have all of this to look forward to next year...

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

-- Regards

-- CC

Reply to this Message

Steve Jordan - 04 Sep 2005 00:46 GMT

On September 3, Clarence Crow wrote in pertinent part:

> The previous PSA post EBRT & just pre HDRB in July 2005was 0.02...down
> in stages from 21.0 at program entry end October 2005.
[quoted text clipped - 4 lines]
> know how good the EBRT and HDRB worked. I'll also be getting DREs at
> those times.

I hope that, if there is a PSA Doubling Time, it's well beyond the
projected test period. Dr. Strum suggests that a PSADT of <12 yes twelve
years is cause for concern. According to him, a PSA velocity (PSAV) of

>0.75 ng/ml/year is also cause for concern. But these values are quoted

for men who are "prediagnostic." Frankly, I'm unsure of what's desirable
for those of us who are post-tx. Maybe it's the same. Dunno. Does anyone
reading this?

Quoting me:

>>I have instructed my med onc that I have changed my mind; I will not stop
>>ADT with the October injection. I have decided, for no reason other than
[quoted text clipped - 4 lines]
> Somewhere I read that ADT becomes refractory after 18 months, so you
> should complete it within that window.

What CC read is an urban legend. I was told the same by the rad onc whom I
fired. It is *FALSE* unless one has widespread bone mets without pain.
Which I don't.

Here is what I posted on the thread "Cryotherapy in Dec, now PSA rising..."
on September first:

> The idea that ADT (Androgen Deprivation Therapy, as it is correctly called)
> fails after some period of time is not true in all cases.
[quoted text clipped - 23 lines]
> The website is:
> www.prostateforum.com

I will acknowledge without shame that when I learned that my fear was
groundless, i wept with relief.

Quoting me:

>>Keep an eye on BMD (bone mass density). I have been taking Actonel 35 mg q
>>weekly for months. Recently had two Pyrilinks-D urine tests (second to
>>confirm the first), and discovered that the Actonel is not successful, bone
>>resorption is too high. I expect to start Zometa infusions, shortly. That
>>should solve the problem.

CC responded:

> The Professor dismissed the bone scan at the beginning because too
> many persons were getting them, causing the program to bog down
> timewise, plus returning negative results thereby wasting money!

Swell.

Wait until there's a life-threatening crisis, *then* try (usually
unsuccessfully ) to resolve it.

If the patient's history, including the staging tests that all too often
are not done because they're unprofitable, indicate an advanced level (e.g.
Gleason 9 biopsy) of PCa , a bone scan is far from a waste of money.
Granted, they are far too often done when there is little to no probability
that they will produce useful data, which is to say relatively lower
clinical stages. What I think I see in CC's message is the usual
beauraucratic stupidity of concluding that the exception *IS* the rule.

> If you presented with Osteo-Porosis and/or recent fractures possibly
> attributable to that, you got a BMD scan. However, if, like me, you
> only had Osteo-Arthritis, you didn't! He further said Zometa or any
> other Bone Mineral Density supplement would not help the symptoms of
> OA!

Um, 'scuse me, but how the hell is the medic to have any idea of the BMD of
the patient unless a BMD test is performed??? What am I missing?

As for Zometa being of help where the patient has osteoarthritis, I dunno.

>>In November, I'll undergo a nuclear bone scan to see whether any metastases
>>have developed since the last test in September, 2003. If so, I would
[quoted text clipped - 3 lines]
> nuclear bone scans and they could be detrimental to the patient, by
> increased exposure to nuclear trace elements.

WHAAAT??

Omigod, the prof has proven himself to be an absolute fool. Just WTF
difference would that make to a *PCa* patient even if it were, vague as it
is, correct?

> I appreciate your concern over the G9s and my yank buddy down the
> road, is also very leery of his (1 only) G9. He seems to be obsessed
> with it and has already asked about going on Taxotere.

IMO, as a Gleason 9 + 8 PCa patient, that the Yank has every good reason to
be "obsessed." It's pure self-defense. Who else will give a damn?

If my PSAs were not so low, I'd damned sure be on docetaxel (Taxotere)
right now.

Regards,

Steve J

"If you know the enemy and know yourself, you need not fear the result of a
hundred battles. If you know yourself but not the enemy, for every victory
gained you will also suffer a defeat. If you know neither the enemy nor
yourself, you will succumb in every battle."
--Sun Tzu, "The Art of War"

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Clarence Crow - 05 Sep 2005 02:52 GMT

<snipped a whole lot of pertinent advice>

Sorry...my entry into the tx program was Nov 2004 (not 2005 as
posted).

As a PCa activist, you can vehemently advise me on all things you
believe I should be getting, but I'm bound to work within the
paramaters of this Free Clinical Trial, albeit getting a bit frayed
around the edges in the latter stages of treatment.
I spotted the cracks quite early on and figured the Professor was more
a "Spin Doctor" than a Doctor. (he has all the Cred. plus good case
history success and lectures on a Global platform.)

It just seems that once the Program is full of the required number of
"candidates", they don't want to hear of any SEs or problems NOT
relative to the core data of the Program. I've even heard it from one
of the lesser doctors in there, that they have to maintain a limited
bandwidth of COMMON SEs, otherwise the program would get too unwieldly
and the Govt finances for it would dry up.

This is why they pass all "un-COMMON" SEs back to your GP (PCP), who
I'll be seeing today for a top-up of Scrips for my uncommon SE's.

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

-- Regards

-- CC

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Steve U - 05 Sep 2005 12:08 GMT

CC,
Your comment "I'm bound to work within the paramaters of this Free
Clinical Trial, albeit getting a bit frayed around the edges in the
latter stages of treatment." They don't own you. Your doctor has many
patients to look after. You have ONE. You are much more important to
your family than the study is! Spend some of their inheritance. You can
vote with your feet and find a doctor who will be concerned about
helping YOU.
Steve U

Reply to this Message

Steve Jordan - 06 Sep 2005 00:24 GMT

On September 5, Steve U wrote to CC:

> Your comment "I'm bound to work within the paramaters of this Free
> Clinical Trial, albeit getting a bit frayed around the edges in the
[quoted text clipped - 3 lines]
> vote with your feet and find a doctor who will be concerned about
> helping YOU.

In CC's defense/defence, though he can certainly speak/write for himself,
I've got to point out that CC is a lab rat in a clinical trial. They
probably care zero about CC as a human being. They probably care about him
only as a source of data.

And if he drops out, they won't care about that, either.

And if he drops out, who will pay for the very expensive txs he receives??

No, as I think he has reminded us, he's pretty much stuck with trying to
survive within the established system.

Regards,

Steve J

"If we take the generally accepted definition of bravery as a
quality which knows not fear, I have never seen a brave man. All
men are frightened. The more intelligent they are, the more they
are frightened. The courageous man is the man who forces himself,
in spite of his fear, to carry on."
--George S. Patton, General, AUS

> Steve U

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