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  #1  
Old 06-25-2008, 09:38 PM
MikeHi@anon.com
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Default My HIFU record. PSA 2008 doubled. New Research Solution?


I am looking for any thoughts at what I think may be a critical moment
for me to make a decision.

1. My HIFU (high intensity focused ultrasound ) record in essence:

Exactly three years ago I was diagnosed with G9, T2b-T3b N0 M0. My
first HIFU (Sonablate 500) in April 2006 ablated the prostate; there
was then a spread into the left seminal vesicle, and a second HIFU in
August 2007 eliminated it. But more spread has been found. Two tumors
in lymph node; while adjacent to seminal vesicle a "left obturator
node, while not >1cm, is moderately suspicious."

The HIFUs were with a spinal anaesthetic, no blood, cuts or pain
afterwards. Most patients out the same day -an old dodderer like me
however two days - anaesthetic wooziness mainly. Catheter removed
after two weeks both times. In those three years I have been fortunate
to have my primary sources eliminated without any toxic effects. The
only pain I suffered was with self-cathetering, for a couple of months
after the prostate op, when a block in the neck of the bladder was not
discovered. When it was, it was quickly and easily dealt with
(ah….hallelujah!). Talking with other HIFU patients, my problem seemed
to be unique.

But clearly the G9 meant that right from the beginning the malevolent
genie was already out of its cave lurking around, hiding in crafty
microscopic quantities, waiting for its time. But it's who has the
last laugh. Me.

2. PSA doubling

One slight complication in having the last laugh however. I've just
had my latest PSA score and even my garbled brain can see, sans
calculator, that it has doubled this year.
January 23 it was 6
June 19 it's 12.5
So that's five months doubling. (my whole PSA record is below).

I noted Oliver Sartor in one of the great researchtopractice podcasts
(17th March 08) as saying it was 'unequivocal' that PSA doubling times
were important. The good news from Oliver is that he also says, 'less
than three months is a very bad actor'. I'm five months. So my acting
career is still ongoing!

3a. Research and the Future

Part of my record is a confession that when I saw my consultant in May
he wanted me to go on Casodex 150. But my feeling for some time from
listening to all these pod and DVD docs, is that toxic type HT is
going out the window. It may be soon. It may be 'real soon' (i.e.
dunno). But sure enough when I tuned into Peter Scardino on the
podcasts he was, if my notes are correct, very bullish about it:
http://www.researchtopractice.net/podcast/feed/PCU.xml
I note he says (apologies to him if not word perfect -those interested
in this post, please listen to him). Current anti-androgens were
relatively weak. New drugs won't eventually make the cells hormone
refractory. They would have minimal side effects. They are already in
clinical trials - with rapidly rising PSA patients. I concluded my
notes with Scardino saying: 'Current HT tx has runs its course.
New options 'coming out rapidly'. Hormones plus immunotherapy will be
the way to cure metastatic disease.' (Please note carefully that these
may not be his actual quotes. They are from notes I have taken
listening to him. I am perfectly sure however I have accurately
conveyed his meaning. I have to report it in this post because I am
seeking advice. And so I must explain why I'm acting like a meerkat
lookout. Standing on my hindlegs, looking around for what might be
galloping over the horizon, unseen by my meerkat mates below.
(Great pic of that on:
http://www.google.co.uk/search?hl=en&q=meerkat&meta=
I'm the one on the left. The other, fatter one in the middle, might be
Rosbif? - I know he's also on the lookout.) (Hurries for the air-raid
shelter again).

3b Latest Research

Is it an omen that this latest research was published the day after my
latest PSA test?
http://www.sciencedaily.com/releases...0617160804.htm

ScienceDaily (June 20, 2008)
"Men whose tumors recur after prostate cancer surgery are three times
more likely to survive their disease long term if they undergo
radiotherapy within two years of the recurrence. Surprisingly,
survival benefits were best in men whose new tumors were growing
fastest, according to results of a "look-back" study of 635 men by
Johns Hopkins Medical Institutions." (…More…)

And: 'For patients with rapidly growing tumors, defined by a PSA
doubling time of less than six months, the benefits of salvage
radiation therapy existed regardless of Gleason score.
This last sentence could have been written with me in mind! (Is one of
the JH researchers a lurker here and said "Hey guys! let's put a note
in the report for MikeHi)? [Research, Alan, I note funded by NCI ]

So there's up-to-the minute research encouragement for my situation.

BUT - (never satisfied, you groan) I would like to avoid radiation too
- if I can. Bowel and bladder complications, other toxics etc, so far
avoided..
But equally, as a proponent of existential lightspeed for Pca cures, I
have to stand up for the principle. So I'll hang around for a bit
longer - at least until I hear from some of the great guys here.

I would be grateful for all views. Questions and a puzzle which occur
to me:

1. I know PSA's can go up to astronomical heights without panic.
How does my doubling time and G9 read in terms of 'gotta do something
quick', or can wait yet?
2. Peter Scardino mentioned one of the new HT drugs (more
effective, few side effects) in a trial. I listened several times but
the nearest I could get to it was 'Aberoderone'. It's wrong because
Google doesn't want to know. Anybody know please? And is anybody able
to put some time scale on new drugs Peter suggested would be 'coming
out rapidly'? I know three years and more might be considered rapid
for trials. Where could I get more information? Anybody informed on
latest immunotherapy actual products?

3. My metastatic condition is not yet symptomatic. (Although I'm
not sure, because I am independently being investigated for pains
which may be caused by something else). However how can radiation be
useful when it's trying to prevent tumors still in hiding?

I'm sure there's stuff I've forgotten. And I'm also sure I may learn
from you guys plenty of other things I should be considering.

Thanks.

My very best wishes to all.

MikeHi
"Exponential lightspeed". Def: The discovery of the cure for Pca at a
speed which defies Einstein.


PSAA Record
2005 14.11 October 25 2005
(HIFU op, prostate, April 2006)
PSA Post HIFU
2006 June 30 0.681
July 25 0.812
Aug 2 0.95
October 23 2.6
November 21 3.0
2007
26th February 4.9
5th July 6.0 * PSADT October to July 0.58yrs
PSAV 5ng/ml/yr
(HIFU 2 on Sem.Ves Aug 21 2007
August 29 4.39
Oct. 31 5.3
2008
January 23 6.0
May 13 11.0
June 19 12.5
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  #2  
Old 06-25-2008, 11:09 PM
ron
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Default Re: My HIFU record. PSA 2008 doubled. New Research Solution?

On Jun 25, 2:09*pm, Mik...@anon.com wrote...snip...
> 2. * * *Peter Scardino mentioned one of the new HT drugs (more
> effective, few side effects) *in a trial. I listened several times but
> the nearest I could get to it was 'Aberoderone'. It's wrong because
> Google doesn't want to know. Anybody know please? *


Abiraterone, I believe it is in phase 3 trials. It can reduce PSA
levels and shrink tumors in some men with hormone refractory PCa...ron
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  #3  
Old 06-26-2008, 12:36 AM
Steve Jordan
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Posts: n/a
Default Re: My HIFU record. PSA 2008 doubled. New Research Solution?

On June 25, MikeHi wrote:

> I am looking for any thoughts at what I think may be a critical moment
> for me to make a decision.
>
> 1. My HIFU (high intensity focused ultrasound ) record in essence:
>
> Exactly three years ago I was diagnosed with G9, T2b-T3b N0 M0. My
> first HIFU (Sonablate 500) in April 2006 ablated the prostate; there
> was then a spread into the left seminal vesicle, and a second HIFU in
> August 2007 eliminated it. But more spread has been found. Two tumors
> in lymph node; while adjacent to seminal vesicle a "left obturator
> node, while not >1cm, is moderately suspicious."


It's too late now, but I have to say that a Gleason 9 (5+4 or 4+5? How
many cores? What percent of each core?) with that clinical stage was
almost guaranteed to be systemic at best and therefore incurable.

(snip)

> But clearly the G9 meant that right from the beginning the malevolent
> genie was already out of its cave lurking around, hiding in crafty
> microscopic quantities, waiting for its time.


No doubt about it. And I do not believe that there was any way in the
world that HIFU or any other local tx would have been curative.

> But it's who has the last laugh. Me.


Maybe. Sorry, I try to be realistic.

> 2. PSA doubling
>
> One slight complication in having the last laugh however. I've just
> had my latest PSA score and even my garbled brain can see, sans
> calculator, that it has doubled this year.
> January 23 it was 6
> June 19 it's 12.5
> So that's five months doubling. (my whole PSA record is below).


Not a pretty picture. The red flags are flying in the breeze.

(snip)

> Is it an omen that this latest research was published the day after my
> latest PSA test?
> http://www.sciencedaily.com/releases...0617160804.htm
>
> ScienceDaily (June 20, 2008)
> "Men whose tumors recur after prostate cancer surgery are three times
> more likely to survive their disease long term if they undergo
> radiotherapy within two years of the recurrence. Surprisingly,
> survival benefits were best in men whose new tumors were growing
> fastest, according to results of a "look-back" study of 635 men by
> Johns Hopkins Medical Institutions." (…More…)


Once again: Never never ever take a press piece on these matters as
authoritative.

The JAMA synopsis of the article upon which the press release was based
is here: http://jama.ama-assn.org/cgi/content/short/299/23/2760

The conclusion is, "Salvage radiotherapy administered within 2 years of
biochemical recurrence was associated with a significant increase in
prostate cancer–specific survival among men with a prostate-specific
antigen doubling time of less than 6 months, independent of other
prognostic features such as pathological stage or Gleason score. These
preliminary findings should be validated in other settings, and
ultimately, in a randomized controlled trial."

Caveat: this is salvage RT. RT is a local tx. If the PCa is systemic or
metastatic, such RT is unlikely to be beneficial, IMO. Where is the
radiation to be aimed in such a case?

(snip)

> BUT - (never satisfied, you groan) I would like to avoid radiation too
> - if I can. Bowel and bladder complications, other toxics etc, so far
> avoided..


Well, it is always the patient's choice. Such SEs are possible and may
be in greater or lesser intensity. Or not at all. I recommend thinking
long and hard -- after learning the facts, not amateur opinions --
before rejecting a tx that could be very helpful. Never forget, failing
to treat also has SEs.

And it is prudent to bear in mind that the horror stories one finds on
support groups are based upon txs that are out of date. Present-day RT
is very accurate and has much lower likelihood of troublesome SEs than
RT done just a few years ago. Think IMRT and IGRT. But still, they are
*local* txs.

(snip)

> 1. I know PSA's can go up to astronomical heights without panic.
> How does my doubling time and G9 read in terms of 'gotta do something
> quick', or can wait yet?


Each of us must use our own best judgment. I am also an extensive
Gleason 4,5=9 on one side, plus Gleason 4,4=8 on the other. My best
judgment in my case is and has been to hit it with everything in the
arsenal. Five years; so far so good. SEs? Some. Mild, except the
impotence from the clumsy cryo.

I don't care; I can still, as the Navajos say, walk in beauty.

> 2. Peter Scardino mentioned one of the new HT drugs (more
> effective, few side effects) in a trial. I listened several times but
> the nearest I could get to it was 'Aberoderone'. It's wrong because
> Google doesn't want to know. Anybody know please? And is anybody able
> to put some time scale on new drugs Peter suggested would be 'coming
> out rapidly'? I know three years and more might be considered rapid
> for trials. Where could I get more information? Anybody informed on
> latest immunotherapy actual products?


That's abiraterone acetate.

It's still in clinical trials; Phase 2, I think. See
www.clinicaltrials.gov at http://tinyurl.com/5so4wv

Looks as if they are interested in hormone-refractory pts who have
failed docetaxel (Taxotere) tx. And at least one study includes prednisone.

I would not hang around waiting. It could be years before it's on the
market. Maybe never. Also: I wonder whether MikeHi meets the entry
criteria for the trials.

I recommend consultation with a genuine cancer specialist, a medical
oncologist, ASAP. Preferable one who is well-trained in tx of PCa. Some
are listed here:
http://www.prostate-cancer.org/resou...physician.html

> 3. My metastatic condition is not yet symptomatic. (Although I'm
> not sure, because I am independently being investigated for pains
> which may be caused by something else). However how can radiation be
> useful when it's trying to prevent tumors still in hiding?


Excellent question. Where oh where to direct the RT?

More information on the drug can be found on the PCRI site here:
http://www.googlesyndicatedsearch.co...=Google+Search
or
http://tinyurl.com/3kc5e6

And here: www.pubmed.gov Search on abiraterone acetate.

My "medical" advice is: roll out the big guns. The sooner the better.

And post a PCa Digest on Physician to Patient for a response from at
least one of the very best PCa specialists in the country if not the
world. See the gateway at http://www.ustoo.com/Prostate_Pointers.asp to
begin the sign-up procedure.

Regards,

Steve J

"Never -- never -- never give up! Never go gently. There will be plenty of
gentle after we die, so until then, fight! Control the rhythms and tempo
of the dance, even when you have to let the PCa dancing bear lead for awhile
-- even when you have to wear the lead suit as you dance -- never let the
bear set the rhythm and tempo of your dance with life -- when the bear
finally takes control, it will be a very hollow feeling for him, because I
will be gone -- dancing in a better place."
--E. B. (Burns) Mixon, PCa survivor, June 14, 2005
Thank you, Burns. Live long and prosper.
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  #4  
Old 06-26-2008, 03:17 AM
Steve Kramer
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Posts: n/a
Default Re: My HIFU record. PSA 2008 doubled. New Research Solution?

<MikeHi@anon.com> wrote in message
news:ve8564ppt9mutdabiru6qi4g4aspckq1o0@4ax.com...
>
> I am looking for any thoughts at what I think may be a critical moment
> for me to make a decision.


> had my latest PSA score and even my garbled brain can see, sans
> calculator, that it has doubled this year.
> January 23 it was 6
> June 19 it's 12.5


I read your considerable post, Mike. My first expression is of sadness. I
was really hoping you didn't have to make this decision until something more
viable was available in your country or in mine.

My opinion, for what it's worth, is with your double-digit PSA doubling in
single-digit months, you have to go on ADT. If you have available to you
what you consider might be more effective ADT or less of an insult to your
body, I suspect you're brave enough to have a mini-trial of your own. In
either case, I will pray you last until something is available that does
work. You've been an inspirational voice these last two years and I'd had
to see it go quiet.





--
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
Illegitimati non carborundum


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  #5  
Old 06-26-2008, 01:13 PM
MikeHi@anon.com
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Default Re: My HIFU record. PSA 2008 doubled. New Research Solution?


Thank you Ron for info, and Steve for your very supportive words.
Great.

Steve you gave me lots of valuable infor so I'll reply a little more
fully.

On Wed, 25 Jun 2008 15:52:26 -0700, Steve Jordan <mycroftscj1@cox.net>
wrote:
SNIP SNIP
>
>It's too late now, but I have to say that a Gleason 9 (5+4 or 4+5? How
>many cores? What percent of each core?) with that clinical stage was
>almost guaranteed to be systemic at best and therefore incurable.


Yup. It was 70% in one of nine cores. 4+5 (The other eight were
fine!)

And I wrote:
>
>> But it's who has the last laugh. Me.

>

Steve says:
>Maybe. Sorry, I try to be realistic.


You said it kindly, but no 'sorry' needed Steve. On the contrary it's
precisely what I'm looking for - and gives me confidence in all you
write.


I also wrote last time:
>> So that's five months doubling. (my whole PSA record is below).

>

Steve replied:
>Not a pretty picture. The red flags are flying in the breeze.


Again, thanks for simple, solid statement. It's why I thought it was
probably decision time.

You added the following from the original paper for the research on
RT:

>These
>preliminary findings should be validated in other settings, and
>ultimately, in a randomized controlled trial."
>
>Caveat: this is salvage RT. RT is a local tx. If the PCa is systemic or
>metastatic, such RT is unlikely to be beneficial, IMO. Where is the
>radiation to be aimed in such a case?


So time counts it out. And that also answered the question I had put
-where to aim. It would explain why no radiation has been suggested.
So s/e s of it are neither here nor there. As regards that, you
comment:

>I don't care; I can still, as the Navajos say, walk in beauty.


Brings a smile.
....
I had written:

Peter Scardino mentioned one of the new HT drugs (more
effective, few side effects) in a trial. I listened several times
but the nearest I could get to it was 'Aberoderone'.
>
>That's abiraterone acetate.
>
>It's still in clinical trials; Phase 2, I think. See
>www.clinicaltrials.gov at http://tinyurl.com/5so4wv
>
>Looks as if they are interested in hormone-refractory pts who have
>failed docetaxel (Taxotere) tx.


That sure ain't me.
>


>I recommend consultation with a genuine cancer specialist, a medical
>oncologist, ASAP. Preferable one who is well-trained in tx of PCa. Some
>are listed here:
>http://www.prostate-cancer.org/resou...physician.html


Thanks but my taxi driver might turn the fare down! I'm UK. I am
anyway in the care of a great London teaching hospital, UCH. A leading
urology oncology consultant who did the HIFU I know in the past has
consulted other specialists there re my case - e.g. the drug and
radiation oncologists.

I'm not going to end up acting on what I learn here. But it will all
help make my mind much clearer as to what I should ask, and what I
should most be thinking about deciding, before I see him again. I
don't always get the time to ask all the questions that roll through
one's head at a time like this. That's not his fault, but the
system's.

In that regard your post has been extremely valuable and frank Steve,
with many relevant URL's to follow-up and I thank you for your time
and consideration.
>
>My "medical" advice is: roll out the big guns. The sooner the better.


I see my consultant again end of July. Will report what I do then.
Will then start marching to the sound of the big guns.

Aside from Churchill's speech at Harrow, already mentioned, I heard
his speech live on the radio as a boy of 12 after the fall of Dunkirk.
It ends: "We shall never surrender". I play it sometimes. It still
lifts me up and sends me forward as it did, and everybody else in
Britain, in 1940.

My kind regards and best wishes to all.

MikeHi
"Exponential lightspeed". Def: The discovery of the cure for Pca at a
speed which defies Einstein.



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  #6  
Old 06-26-2008, 01:13 PM
kh
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Posts: n/a
Default Re: My HIFU record. PSA 2008 doubled. New Research Solution?

On Jun 25, 4:09*pm, Mik...@anon.com wrote:

> * 2008
> * * * * * * * * January 23 * * * * * *6.0 **
> * * * * * * * * May 13 * * * * *11.0 * * * * * * *
> * * * * * * * * June 19 * * * * * * * * 12.5 *


MikeHi,

We're all different with different diseases and my experience probably
has little value in predicting your future.

However, each time my PSA rose above 15 or so, I was in a world of
hurt. I'm doing much better with aggressive treatment and close,
close monitoring.

-kh Hammer it with all you have.
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  #7  
Old 06-26-2008, 01:13 PM
rosbif
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Posts: n/a
Default Re: My HIFU record. PSA 2008 doubled. New Research Solution?

On Thu, 26 Jun 2008 10:27:41 +0100, MikeHi@anon.com wrote:

>>Caveat: this is salvage RT. RT is a local tx. If the PCa is systemic or
>>metastatic, such RT is unlikely to be beneficial, IMO. Where is the
>>radiation to be aimed in such a case?

>
>So time counts it out. And that also answered the question I had put
>-where to aim. It would explain why no radiation has been suggested.
>So s/e s of it are neither here nor there. As regards that, you
>comment:


Mike, I'm a beginner at all this, but I haven't understood why your
PSA history* need rule out salvage RT on the assumption that the
recurrence might not be 'that far away' from the prostate. Can RT
not be aimed within a circle of 'best guess' diameter round the
prostate bed? Someone please tell me if I'm talking nonsense.

Time is pressing of course but the conclusion of the survey you
mentioned and Steve J quoted appeared to concede that its results
(within 2 years of recurrence) were a rough guide and in any case,
independent of stage and grade.

Have I misunderstood or am I missing something here?

*
diagnosis 14.11
post-HIFU 1 0.681
post-HIFU 2 4.39
latest 12.5
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  #8  
Old 06-26-2008, 06:25 PM
cmdrdata
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Posts: n/a
Default Re: My HIFU record. PSA 2008 doubled. New Research Solution?

On Jun 26, 5:02 am, rosbif wrote:
> Mike, I'm a beginner at all this, but I haven't understood why your
> PSA history* need rule out salvage RT on the assumption that the
> recurrence might not be 'that far away' from the prostate. Can RT
> not be aimed within a circle of 'best guess' diameter round the
> prostate bed? Someone please tell me if I'm talking nonsense.
>
> Time is pressing of course but the conclusion of the survey you
> mentioned and Steve J quoted appeared to concede that its results
> (within 2 years of recurrence) were a rough guide and in any case,
> independent of stage and grade.


I am in concurrence with SteveJ in his answer to MikeHi, particularly
in the case of the "cat already out of the bag", thus systemic tx
is the next best course. I myself have had RT, and have had no fear
of it (as he said, RT nowadays, done by competent RT expert has
tolerable and minimal SEs), however, "best guess" RT is just that,
it is like shooting in the dark with a minimal clue of where the
target
is located. Think about this prostate bed, is it the thin wall of the
rectum? Is it more closer to the pubic bone? The nerve bundle or
lymph node? Remember that those with advanced PC showed that
these tiny monsters have traveled with the blood stream(?) to distant
part of the bone and bodies. If you want to prolong your live, then
at this point in time, systemic is the only way to go. The question
I'd surface would be, how would my QOL be if I live 10-20 years with
systemic treatment versus living shorter time, without it?
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  #9  
Old 06-26-2008, 06:25 PM
rosbif
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Posts: n/a
Default Re: My HIFU record. PSA 2008 doubled. New Research Solution?

On Thu, 26 Jun 2008 08:03:11 -0700 (PDT), cmdrdata <cmdrdata@mail.com>
wrote:

>
>I am in concurrence with SteveJ in his answer to MikeHi, particularly
>in the case of the "cat already out of the bag", thus systemic tx
>is the next best course. I myself have had RT, and have had no fear
>of it (as he said, RT nowadays, done by competent RT expert has
>tolerable and minimal SEs), however, "best guess" RT is just that,
>it is like shooting in the dark with a minimal clue of where the
>target
>is located. Think about this prostate bed, is it the thin wall of the
>rectum? Is it more closer to the pubic bone? The nerve bundle or
>lymph node? Remember that those with advanced PC showed that
>these tiny monsters have traveled with the blood stream(?) to distant
>part of the bone and bodies. If you want to prolong your live, then
>at this point in time, systemic is the only way to go. The question
>I'd surface would be, how would my QOL be if I live 10-20 years with
>systemic treatment versus living shorter time, without it?


I can't argue with that, one has to feel uneasy that salvage RT is
guessing game although it evidently achieves some unknown measure of
success. Whether this justifies another helping of SEs ....very
difficult.

Would there be any virtue in RT + systemic, or more strategically, RT
-> monitor PSA -> jump in with systemic if there's no response from
RT? (Steve K's route?). As kh and others have suggested - hammer it
with everything?
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  #10  
Old 06-26-2008, 07:46 PM
Steve Jordan
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Posts: n/a
Default Re: My HIFU record. PSA 2008 doubled. New Research Solution?

On June 26, MikeHi wrote:

> Thank you Ron for info, and Steve for your very supportive words.
> Great.
>
> Steve you gave me lots of valuable infor so I'll reply a little more
> fully.


(snip)

It would be useful to know how to reach a highly-regarded med onc. Here
he is:

Professor R T D Oliver
Consultant Medical Oncologist
Holly House Hospital
High Road
Buckhurst Hill, Essex
IG9 5HX
T: 0845 257 8522
F: 020 8554 4895
E: u.d.somasundram@qmul.ac.uk

The London Clinic
20 Devonshire Place
London
W1G 6BW

Regards,

Steve J

Another Churchill quotation:

"Never give in--never, never, never, never, in nothing great or small,
large or petty, never give in except to convictions of honour and good
sense. Never yield to force; never yield to the apparently overwhelming
might of the enemy.''
--Sir Winston L. S. Churchill
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  #11  
Old 06-26-2008, 11:47 PM
Steve Kramer
Guest
 
Posts: n/a
Default Re: My HIFU record. PSA 2008 doubled. New Research Solution?

<rosbif> wrote in message news:61g7645rjom36t8rgt27ton7ms2ke9tic7@4ax.com...


> Would there be any virtue in RT + systemic, or more strategically, RT
> -> monitor PSA -> jump in with systemic if there's no response from
> RT? (Steve K's route?). As kh and others have suggested - hammer it
> with everything?


SRT assumes the possibility that the lone cancer in the body is sitting up
all nice and purty on the prostate bed. At that point, it's worth the risk
of RT to kill it. The risk is RT is hard on the system. You purposely
incinerate the prostate bed and everything in between the skin and the
prostate bed. If you survive that (most do) and prostate cancer, then in 20
years you get to play with radiation damage to your colon, urethra,
intestines, etc.

I think it's a forgone conclusion that Mike's cancer is systemic and he
needs a systemic solution.


--
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
Illegitimati non carborundum


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  #12  
Old 06-26-2008, 11:47 PM
Steve Jordan
Guest
 
Posts: n/a
Default Re: My HIFU record. PSA 2008 doubled. New Research Solution?

On June 26, Steve Kramer wrote:

(snip)

> SRT assumes the possibility that the lone cancer in the body is sitting up
> all nice and purty on the prostate bed. At that point, it's worth the risk
> of RT to kill it. The risk is RT is hard on the system. You purposely
> incinerate the prostate bed and everything in between the skin and the
> prostate bed.


Respectfully disagree with that unequivocal statement. It ain't
necessarily so. Sounds as if Steve K assumed that the RT was directed
from only one source at a fixed location. Think IMRT and IGRT.

> If you survive that (most do) and prostate cancer, then in 20
> years you get to play with radiation damage to your colon, urethra,
> intestines, etc.


Maybe. If you're extremely unlucky. And/or the rad onc was incompetent.

Lastly, consider the SEs of doing nothing.

Regards,

Steve J
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  #13  
Old 06-27-2008, 01:15 AM
Alan Meyer
Guest
 
Posts: n/a
Default Re: My HIFU record. PSA 2008 doubled. New Research Solution?

Mike,

As Steve Jordan pointed out, you can't take the news article
version of a research report as an accurate reflection of the
actual content of the article.

I looked up the actual article on radiation by the Hopkins
professors. I haven't read the whole thing, but I did see the
following:

"Between June 1982 and August 2004, 926 men developed
recurrent disease following radical retropubic prostatectomy
with staging pelvic lymphadenectomy at Johns Hopkins Hospital
(Baltimore, Maryland) for clinically localized prostate
cancer (clinical stage T1-T2), and either did not receive
salvage therapy, received salvage radiotherapy alone, or
received salvage therapy combined with hormonal therapy. The
latter included hormonal therapy administered immediately
prior to, during, or immediately following salvage
radiotherapy, or administered after the first PSA measurement
following salvage radiotherapy but before further progression
or metastasis."

It isn't said explicitly, but I think that it may be implied, especially
in the last sentence, that none of these men had detectable signs
of systemic disease.

I would be surprised if it means anything else. The study was a
retrospective look at treatment that took place over the last
several decades. During that time (as now) it was not believed
that radiation would help people who had metastatic disease, and
it would not have been used. I would further bet that most of
the men in the study had a PSA below 1.0 at the time of
salvage radiation.

So I think that all this article is doing is adding more data
points in support of the current theory - which holds that
salvage radiation can help if the patient is not yet metastatic.

It's not at all clear that this applies to you. I think that
everyone else has already said this, but I wanted to assure you
that, as far as I can tell, the Hopkins article is not saying
anything different in spite of the fact that the journalist did
not say that all of these patients had no detectable
indications of metastasis.

As for immunotherapy and other drugs, as others have said, don't
wait for that. Those treatments aren't ready yet and may not be
ready for years.

If I were you I would ask for ADT now. I would not wait. There
is evidence that early ADT provides longer total life extension
than later ADT.

I had a short course of ADT treatment. I didn't like it, but it
wasn't horrible. It didn't change my life, make me stupid or
depressed, or take away all of my energy. I could deal with it
and, if I have a recurrence, I'll deal with it again. In my
personal opinion, at least for me, it's definitely better than
the alternative of no treatment.

Best of luck.

Alan


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  #14  
Old 06-27-2008, 12:29 PM
MikeHi@anon.com
Guest
 
Posts: n/a
Default Re: My HIFU record. PSA 2008 doubled. New Research Solution?

Thank you all, Alan, Steve K, Steve J (and for all your references),
Rosbif,Cmdrdata, and kh for your welcome thoughts and advice. General
agreement seems to be following kh's 'hammer it' - and his words
about post PSA15 hit a mark - although we're all different I know.

I've found a good mobile USB modem and actually typing this while with
my wife. It's amazing what she picks up in between rambling and gazing
into the distance and suddenly comes out with. I have explained to her
the reason I couldn't be with her all the time was that she wasn't
well, and as I wasn't well either sometimes I couldn't come. This
morning, (i stayed overnight on my camp bed) she said to me, 'You're
not going to die, are you?' I laughed and said, 'No.' 'Good', she
said.

So there you are.The die, as they say, is cast. The challenge is down
and answered. Sod it. No worry. I'll keep posting. And eating
ice-cream each night a la kh.

Kind regards

and best wishes to all

Mike Hi
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  #15  
Old 06-27-2008, 08:01 PM
Steve Kramer
Guest
 
Posts: n/a
Default Re: My HIFU record. PSA 2008 doubled. New Research Solution?

"Steve Jordan" <mycroftscj1@cox.net> wrote in message
newsQT8k.5085$xb2.1437@newsfe12.phx...

>> SRT assumes the possibility that the lone cancer in the body is sitting
>> up all nice and purty on the prostate bed. At that point, it's worth the
>> risk of RT to kill it. The risk is RT is hard on the system. You
>> purposely incinerate the prostate bed and everything in between the skin
>> and the prostate bed.

>
> Respectfully disagree with that unequivocal statement. It ain't
> necessarily so. Sounds as if Steve K assumed that the RT was directed from
> only one source at a fixed location. Think IMRT and IGRT.


You may, indeed disagree, sir. However, I believe it is merely my brevity
that separates our respective opinions. EBRT (which I had), IMRT, and IGRT
(so far as I know) all shoot accelerated particles from varying positions.
With me, EBRT shot them from six different positions. While only the
prostate bed (and anything really close) got dosed by every shot, there were
six paths that got hit once a day for 35 days. That is the damage to which
I referred.

>> If you survive that (most do) and prostate cancer, then in 20 years you
>> get to play with radiation damage to your colon, urethra, intestines,
>> etc.

>
> Maybe. If you're extremely unlucky. And/or the rad onc was incompetent.


Maybe your assessment is better than mine on this topic. I thought that it
was pretty much a sure thing, to one level or another.

> Lastly, consider the SEs of doing nothing.


I was merely discussing the decision tree that MikeHi is faced with. My
case was a no-doubter at that point, even if it did prove to me shutting the
back barn doors after I had shut the front and the animals had already
escaped.


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  #16  
Old 06-27-2008, 08:01 PM
Steve Kramer
Guest
 
Posts: n/a
Default Re: My HIFU record. PSA 2008 doubled. New Research Solution?

<MikeHi@anon.com> wrote in message
news:hbg9649oad0557r23hcq61spml0j2cea5n@4ax.com...

> It's amazing what she picks up in between rambling and gazing
> into the distance and suddenly comes out with. I have explained to her
> the reason I couldn't be with her all the time was that she wasn't
> well, and as I wasn't well either sometimes I couldn't come. This
> morning, (i stayed overnight on my camp bed) she said to me, 'You're
> not going to die, are you?' I laughed and said, 'No.' 'Good', she
> said.


Jesus, Mike! I apologize. I keep forgetting you have another branch, I
very heavy branch, in your decision tree.

--
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
Illegitimati non carborundum


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  #17  
Old 06-28-2008, 04:15 AM
Steve Jordan
Guest
 
Posts: n/a
Default Re: My HIFU record. PSA 2008 doubled. New Research Solution?

On June 27, Steve K replied to me:

> You may, indeed disagree, sir. However, I believe it is merely my brevity
> that separates our respective opinions. EBRT (which I had), IMRT, and IGRT
> (so far as I know) all shoot accelerated particles from varying positions.
> With me, EBRT shot them from six different positions.


So it was IMRT, likely.

> While only the
> prostate bed (and anything really close) got dosed by every shot, there were
> six paths that got hit once a day for 35 days. That is the damage to which
> I referred.


No need to jump snarky. All I ask is evidence. Otherwise, someone might
consider the statements to be authoritative.

And "EBRT" means "external beam radiation treatment." IMRT (intensity
modulated RT) and IGRT (image guided RT), as well as the outmoded and
inaccurate 3DCRT (three-dimensional conformal RT) are all "EBRT."

> Maybe your assessment is better than mine on this topic. I thought that it
> was pretty much a sure thing, to one level or another.


That assessment is much too pessimistic.

Here is the latest clinical study report on secondary cancers:
Rapiti E, et al., "Increased risk of colon cancer after external
radiation therapy for prostate cancer." Pub Med ID 18546265

The study cohort was "men with prostate cancer diagnosed between 1980
and 1998 who survived at least 5 years after diagnosis. Of the 1,134
patients, 264 were treated with external radiotherapy."

NB: type of RT not specified.

"At the end of follow-up (31 December 2003) 19 patients had developed a
colorectal cancer."

That is 7.19%. And it involves RT of unspecified type and unspecified
strength given at an unspecified time. At least five years ago, probably
more. Five years is a huge number in the developing field of RT. I can
guarantee with confidence that it was not IGRT, and was probably not IMRT.

Pub Med, a service of the US National Library of Medicine, is at
www.pubmed.gov Search on the ID number.

Somewhere, I have seen a purported study that alleged a causal
relationship between prostate EBRT of some sort and *lung cancer*. Gimme
a break.

Regards,

Steve J

"What are the facts? Again and again and again -- what are the facts?
Shun wishful thinking, ignore divine revelation, forget 'what the stars
foretell,' avoid opinion, care not what the neighbors think, never mind
the unguessable 'verdict of history' -- what are the facts, and to how
many decimal places? You pilot always into an unknown future; facts are
your single clue. Get the facts!"
--Lazarus Long

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  #18  
Old 06-28-2008, 04:15 AM
Steve Kramer
Guest
 
Posts: n/a
Default Re: My HIFU record. PSA 2008 doubled. New Research Solution?

"Steve Jordan" <mycroftscj1@cox.net> wrote in message
news:tMe9k.5733$_T7.1790@newsfe08.phx...
> On June 27, Steve K replied to me:


> No need to jump snarky. All I ask is evidence. Otherwise, someone might
> consider the statements to be authoritative.


If it came across as such, this time it was not intended. I pretty much
cede to you on the points you've made as my research into what will happen
to me at 68 YOA has been limited at best.


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  #19  
Old 06-28-2008, 10:11 AM
J
Guest
 
Posts: n/a
Default Re: My HIFU record. PSA 2008 doubled. New Research Solution?

Steve Jordan wrote:

> On June 27, Steve K replied to me:
>
> > You may, indeed disagree, sir. However, I believe it is merely my brevity
> > that separates our respective opinions. EBRT (which I had), IMRT, and IGRT
> > (so far as I know) all shoot accelerated particles from varying positions.
> > With me, EBRT shot them from six different positions.

>
> So it was IMRT, likely.
>
> > While only the
> > prostate bed (and anything really close) got dosed by every shot, there were
> > six paths that got hit once a day for 35 days. That is the damage to which
> > I referred.

>
> No need to jump snarky. All I ask is evidence. Otherwise, someone might
> consider the statements to be authoritative.
>
> And "EBRT" means "external beam radiation treatment." IMRT (intensity
> modulated RT) and IGRT (image guided RT), as well as the outmoded and
> inaccurate 3DCRT (three-dimensional conformal RT) are all "EBRT."
>
> > Maybe your assessment is better than mine on this topic. I thought that it
> > was pretty much a sure thing, to one level or another.

>
> That assessment is much too pessimistic.
>
> Here is the latest clinical study report on secondary cancers:
> Rapiti E, et al., "Increased risk of colon cancer after external
> radiation therapy for prostate cancer." Pub Med ID 18546265
>
> The study cohort was "men with prostate cancer diagnosed between 1980
> and 1998 who survived at least 5 years after diagnosis. Of the 1,134
> patients, 264 were treated with external radiotherapy."


Cancer is a disease of aging. Cells age and mutate.
So sure treatments can mutate cells.
So why treat a slow growing cancer in an elderly person who's more likely to die
from something else.

There's also a genetic link between colon and prostate cancer (in some persons).

Article to follow. (Mozilla doesn't like thunderstorms - I have to reboot)
J


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  #20  
Old 06-28-2008, 10:11 AM
MikeHi@anon.com
Guest
 
Posts: n/a
Default Re: My HIFU record. PSA 2008 doubled. New Research Solution?

On Fri, 27 Jun 2008 14:56:54 -0400, "Steve Kramer"
<skramer@cinci.rr.com> wrote:

>
>Jesus, Mike! I apologize. I keep forgetting you have another branch, I
>very heavy branch, in your decision tree.


One guy who doesn't have to apologise to me or anybody else on this ng
is you Steve.
Kind regards
MikeHi
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  #21  
Old 06-28-2008, 10:11 AM
J
Guest
 
Posts: n/a
Default Re: My HIFU record. PSA 2008 doubled. New Research Solution?

J, no> wrote:

> Steve Jordan wrote:
>
>
> > Here is the latest clinical study report on secondary cancers:
> > Rapiti E, et al., "Increased risk of colon cancer after external
> > radiation therapy for prostate cancer." Pub Med ID 18546265
> >
> > The study cohort was "men with prostate cancer diagnosed between 1980
> > and 1998 who survived at least 5 years after diagnosis. Of the 1,134
> > patients, 264 were treated with external radiotherapy."

>
> Cancer is a disease of aging. Cells age and mutate.
> So sure treatments can mutate cells.
> There's also a genetic link between colon and prostate cancer (in some persons).
>
> Article to follow. (Mozilla doesn't like thunderstorms - I have to reboot)
> J


Excerpts
http://www.medicinenet.com/script/ma...ticlekey=82361
Prostate Cancer Gene Also Raises Colon Cancer Risk
By E.J. Mundell
HealthDay Reporter

SUNDAY, July 8 (HealthDay News) -- Compelling evidence from four studies confirms
that a key change in DNA previously linked to prostate cancer also raises colon
cancer risk, scientists report.

They stress that the risk to any individual carrier of the rs6983267 variant gene --
which is located on a region of chromosome 8 called 8q24 -- are relatively slight.
Overall, carriers of this variant have about a 20 percent higher risk of developing
a colorectal malignancy compared to non-carriers, the researchers said.

The gene's real power comes in its prevalence.

[...]Genetic tests that might assess people's risk or help in cancer diagnosis are
still years away, and, for now, the new finding "will not in any way significantly
alter clinical practice," he said.

Still, the assembled experts agreed that clinical application remains the ultimate
goal of their research efforts.


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  #22  
Old 06-28-2008, 03:50 PM
kh
Guest
 
Posts: n/a
Default Re: My HIFU record. PSA 2008 doubled. New Research Solution?

mikehi wrote:

>
> So there you are.The die, as they say, is cast. The challenge is down
> and answered. Sod it. No worry. I'll keep posting. And eating
> ice-cream each night a la kh.


Right on!

I had a hard time the last couple days. The first 4 or 5 days after
the chemo has me tired and "uncomfortable". Add in the hunger from
the steroids and I almost hopped a plane to your area for fish 'n
chips and a dark brew. Icelandic cod with grease dripping, potatoes
crispy on the outside, soft on the inside, wash it down with savored
sips. You think you can shoot darts? Care to make it interesting?

24 mg of decadron and 10 mg of pregnisone in one day left me starving.

For three nights, I had a mild Taxotere Buzz; that's a feeling like
your legs and feet are vibrating. I got 5, then 7 hours sleep. 2nd
and 3rd nights were better after I resorted to a half a percocet.

That left me exhausted at work but I did get 100% of my assignments
done. My boss was very happy.

Next week will be a lot better. It's a short week. We get the 4th of
July as a holiday. Hot dogs, fireworks, apple pie. 10 days post
infusion, the effects will be fading and I'll be on the upswing.
Good times.

-kh

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  #23  
Old 07-02-2008, 03:38 PM
MikeHi@anon.com
Guest
 
Posts: n/a
Default Re: My HIFU record. PSA 2008 doubled. New Research Solution?

Hi kh, bit late picking up your post but the honour of Brit fish n'
chips had to be defended.

On Sat, 28 Jun 2008 04:24:00 -0700 (PDT), kh <tchtic@yahoo.com> wrote:


>I had a hard time the last couple days. The first 4 or 5 days after
>the chemo has me tired and "uncomfortable". Add in the hunger from
>the steroids and I almost hopped a plane to your area for fish 'n
>chips and a dark brew. Icelandic cod with grease dripping, potatoes
>crispy on the outside, soft on the inside....


Tasted even better in the old days. Fish and chips were wrapped in old
daily newspapers. On the counters were huge aluminium salt cellars and
bottles of vinegar. The customer would take the package, unwrap and
dose liberally with vinegar and salt. Eating the chips from the the
sodden package of print and possibly reading a story which caught the
eye would sustain the customer as he/she/it walked home. There were
almost riots when the day came that newspapers had to go; people swore
they would never taste as good again. ('...mmm ..I can smell the whole
delicious package impregnated with vinegar even as I write,,)


>> You think you can shoot darts? Care to make it interesting?


You must be kidding. I've read plenty about what you get up to
competitively and you would have had an equal chance to practice.I'll
do it however the first day after your umpteenth chemo, a hundred
points start, and if I don't have to get a double to win. That's what
I would call an even playing field with any competition with a tough
fighter like you. Oh, and I would like to weigh the darts.

Now... soccer or cricket...penalty shoot-out or score most from one
over. That's OK. Whoever loses pays for a super-large ice-cream - and
American apple pie, which I love.


>24 mg of decadron and 10 mg of pregnisone in one day left me starving.
>
>For three nights, I had a mild Taxotere Buzz; that's a feeling like
>your legs and feet are vibrating. I got 5, then 7 hours sleep. 2nd
>and 3rd nights were better after I resorted to a half a percocet.
>
>That left me exhausted at work but I did get 100% of my assignments
>done. My boss was very happy.


And us.
>
>Next week will be a lot better. It's a short week. We get the 4th of
>July as a holiday. Hot dogs, fireworks, apple pie. 10 days post
>infusion, the effects will be fading and I'll be on the upswing.
>Good times.


You better practice your soccer and cricket on the 4th, kh. And make
sure you keep upswinging.

Kind regards

best wishes to all

MikeHi
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  #24  
Old 07-03-2008, 05:53 AM
Gourd Dancer
Guest
 
Posts: n/a
Default Re: My HIFU record. PSA 2008 doubled. New Research Solution?

Ah, but the fish was three times the thickness.......

GD
<MikeHi@anon.com> wrote in message
news:lvvm64h3bdqog43qer1fsucppmd9l2q278@4ax.com...
> Hi kh, bit late picking up your post but the honour of Brit fish n'
> chips had to be defended.
>
> On Sat, 28 Jun 2008 04:24:00 -0700 (PDT), kh <tchtic@yahoo.com> wrote:
>
>
>>I had a hard time the last couple days. The first 4 or 5 days after
>>the chemo has me tired and "uncomfortable". Add in the hunger from
>>the steroids and I almost hopped a plane to your area for fish 'n
>>chips and a dark brew. Icelandic cod with grease dripping, potatoes
>>crispy on the outside, soft on the inside....

>
> Tasted even better in the old days. Fish and chips were wrapped in old
> daily newspapers. On the counters were huge aluminium salt cellars and
> bottles of vinegar. The customer would take the package, unwrap and
> dose liberally with vinegar and salt. Eating the chips from the the
> sodden package of print and possibly reading a story which caught the
> eye would sustain the customer as he/she/it walked home. There were
> almost riots when the day came that newspapers had to go; people swore
> they would never taste as good again. ('...mmm ..I can smell the whole
> delicious package impregnated with vinegar even as I write,,)
>
>
>>> You think you can shoot darts? Care to make it interesting?

>
> You must be kidding. I've read plenty about what you get up to
> competitively and you would have had an equal chance to practice.I'll
> do it however the first day after your umpteenth chemo, a hundred
> points start, and if I don't have to get a double to win. That's what
> I would call an even playing field with any competition with a tough
> fighter like you. Oh, and I would like to weigh the darts.
>
> Now... soccer or cricket...penalty shoot-out or score most from one
> over. That's OK. Whoever loses pays for a super-large ice-cream - and
> American apple pie, which I love.
>
>
>>24 mg of decadron and 10 mg of pregnisone in one day left me starving.
>>
>>For three nights, I had a mild Taxotere Buzz; that's a feeling like
>>your legs and feet are vibrating. I got 5, then 7 hours sleep. 2nd
>>and 3rd nights were better after I resorted to a half a percocet.
>>
>>That left me exhausted at work but I did get 100% of my assignments
>>done. My boss was very happy.

>
> And us.
>>
>>Next week will be a lot better. It's a short week. We get the 4th of
>>July as a holiday. Hot dogs, fireworks, apple pie. 10 days post
>>infusion, the effects will be fading and I'll be on the upswing.
>>Good times.

>
> You better practice your soccer and cricket on the 4th, kh. And make
> sure you keep upswinging.
>
> Kind regards
>
> best wishes to all
>
> MikeHi



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  #25  
Old 07-03-2008, 10:58 PM
MikeHi@anon.com
Guest
 
Posts: n/a
Default Re: My HIFU record. PSA 2008 doubled. New Research Solution?

..
>

MikeHi had written to kh
>>
>> Tasted even better in the old days. Fish and chips were wrapped in old
>> daily newspapers. On the counters were huge aluminium salt cellars and
>> bottles of vinegar. The customer would take the package, unwrap and
>> dose liberally with vinegar and salt.


On Wed, 2 Jul 2008 22:33:04 -0500, "Gourd Dancer"
<!!!msheets!!!@!!!sbcglobal!!!.net> wrote:

>Ah, but the fish was three times the thickness......



Touche!(e acute) as the French fish and chip shops might say!
MikeHi


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