Update-Bob Caron

It's been ages since I've posted an update,but I still lurk frequently.
I am back on Lupron/Casodex. Last lab report my testosterone is starting
to climb, I hope that is not a indicator of the start of ADT failure.
Side effects the second time around are; hot flashes are not as bad,
fatigue is much worse. I have no energy at all.
Been trying to shed some weight since January. only lost ten pounds.
Averaging about 1500-1600 calories a day. Doctor says its much harder
with low testosterone levels.

Current Age 68
EBRT 2004
PSA 1.1 01/05
PSA 2.7 09/05
PSA 3.4 01/06
ADT 06/06
Intermittent 11/07 PSA <0.1 Test. 14
PSA <0.1 Test. 112 04/08
PSA 0.2 Test. 137 06/08
PSA 0.6 Test. 158 08/08
PSA 2.3 Test. 170 11/08
ADT 12/08
PSA <0.1 Test. 15 01/09
PSA <0.1 Test. 10 03/09
PSA <0.1 Test. 28 05/09

oaktree wrote:
>
> fatigue is much worse. I have no energy at all.
> Been trying to shed some weight since January. only lost ten pounds.
> Averaging about 1500-1600 calories a day. Doctor says its much harder
> with low testosterone levels.

I wonder if any physicians or nutritionists or institutions have done
any research into weight management specifically for men with low T? We
all know the solution to excess weight is consuming fewer calories than
we expend, but a) below some minimum calorie threshold our bodies go
into an emergency calorie conservation mode that's much tougher to
overcome and b) many ADT pts have no energy for exercise. The resulting
challenge to one's willpower at both ends of the horse -- calories in
and calories out -- is greatly exacerbated by the lack of T.

Sure, we could lose weight the same way they did at Auschwitz --
starvation-induced ketosis -- but I'd prefer the burger and the belly,
thank you veddy much.

So the next step, one I suspect is neither researched nor very likely
yet (but I've not researched it), would be to explore whether low T
changes any of the body's normal weight management paradigms. Might
low-T men react differently to far fewer calories than the 1200-1400 or
so that trigger what may resemble metabolic hibernation? Has their
resting metabolism dropped enough that 1,000-1,200 may be all they need
most days? (That seems self-evident, since 1,500-1,600 isn't helping.)

OTOH, 10 pounds in 5 months isn't bad; lose much faster and the
self-protection metabolic shutdown may occur. The problem with calorie
restriction alone is that it sheds primarily muscle, which we need in
order to burn calories to lose weight and to actually *do* anything.
It's fat we need to shed, and that's what our bodies try to hoard when
it thinks we're starving. The muscle goes first, then the bone IRRC,
then near true starvation the fat.

This leaves us with the solution a few of our guys here have reached
through sheer willpower or good genes or lucky metabolisms or not-so-low
T: suck it up and exercise. THAT burns the fat, and if it includes
strength-building exercise, it preserves and/or builds muscle and bone
IF we're eating sufficient nutrients.

I.P.

"oaktree" <rjcaron65@msn.com> wrote in message
news:h13d2m$2l2$1@news.eternal-september.org...
: It's been ages since I've posted an update,but I still lurk frequently.
: I am back on Lupron/Casodex. Last lab report my testosterone is starting
: to climb, I hope that is not a indicator of the start of ADT failure.
: Side effects the second time around are; hot flashes are not as bad,
: fatigue is much worse. I have no energy at all.
: Been trying to shed some weight since January. only lost ten pounds.
: Averaging about 1500-1600 calories a day. Doctor says its much harder
: with low testosterone levels.
:


Welcome back, Oak!!!

The good news is that your PSA is back under the radar and has been for all
of 2009. Your cancer is on its knees. I see no indication that your ADT is
failing. I don't know what the average length of time is for a successful
ADT patient, but my doc has had two of his patients go 15 years without
failure. I'm trying to beat that.

What are you doing to mitigate the side effects? I do some of my best
mitigation by walking three, four, or five times a week and between 2.5 and
3.4 miles depending on at which park I walk. I bullied through or just
accepted as fact other side effects, but there are medications that can help
you mitigate most of them.

Interestingly, in a recent three-year study posted at PCRI, 90% of all ADT
patients suffered some side effect, including 89% of which had hot flashes,
66% grew breasts, and 50% had high cholesterol. 27% also had bone loss, so
you should make sure to keep that in check too. In the cases of men with
these issues, 91% did nothing about the breasts, 83% did nothing about hot
flashes, and 59% did nothing about bone loss.

My advice: Relax about the cancer. You're fighting it off. But get
together with your medical team and have your side effects treated.

--
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 undetectable since; last checked on 06/04/09
Illegitimati non carborundum

I.P.
I have thought about trying 1000-1200 calories a day. My Doc is not
in favor.
I have done limited research; I am 6'2", weigh 265 pounds. according to
local
dietician, I need aprox. 2800 calories to maintain my present weight, and to
lose
one pound per week, I would need to drop down to 2300 calories. Base on avg.
of
1500-1600, I should be losing two pounds per week.
As you stated, we need muscle to burn off calories. the length of time I
have been on
ADT, has done a job on any muscle I had.
My problem is that I should have been on top of my weight problem at the
very
beginning of this fight.
Bob
"I.P. Freely" <fuhgheddaboutit@noway.nohow> wrote in message
news:JrcZl.1080$jI6.210@newsfe11.iad...
> oaktree wrote:
>>
>> fatigue is much worse. I have no energy at all.
>> Been trying to shed some weight since January. only lost ten pounds.
>> Averaging about 1500-1600 calories a day. Doctor says its much harder
>> with low testosterone levels.
>
> I wonder if any physicians or nutritionists or institutions have done any
> research into weight management specifically for men with low T? We all
> know the solution to excess weight is consuming fewer calories than we
> expend, but a) below some minimum calorie threshold our bodies go into an
> emergency calorie conservation mode that's much tougher to overcome and b)
> many ADT pts have no energy for exercise. The resulting challenge to one's
> willpower at both ends of the horse -- calories in and calories out -- is
> greatly exacerbated by the lack of T.
>
> Sure, we could lose weight the same way they did at Auschwitz --
> starvation-induced ketosis -- but I'd prefer the burger and the belly,
> thank you veddy much.
>
> So the next step, one I suspect is neither researched nor very likely yet
> (but I've not researched it), would be to explore whether low T changes
> any of the body's normal weight management paradigms. Might low-T men
> react differently to far fewer calories than the 1200-1400 or so that
> trigger what may resemble metabolic hibernation? Has their resting
> metabolism dropped enough that 1,000-1,200 may be all they need most days?
> (That seems self-evident, since 1,500-1,600 isn't helping.)
>
> OTOH, 10 pounds in 5 months isn't bad; lose much faster and the
> self-protection metabolic shutdown may occur. The problem with calorie
> restriction alone is that it sheds primarily muscle, which we need in
> order to burn calories to lose weight and to actually *do* anything. It's
> fat we need to shed, and that's what our bodies try to hoard when it
> thinks we're starving. The muscle goes first, then the bone IRRC, then
> near true starvation the fat.
>
> This leaves us with the solution a few of our guys here have reached
> through sheer willpower or good genes or lucky metabolisms or not-so-low
> T: suck it up and exercise. THAT burns the fat, and if it includes
> strength-building exercise, it preserves and/or builds muscle and bone IF
> we're eating sufficient nutrients.
>
> I.P.

Hi Steve,
I don't know what the average success time on ADT is, my Onc say's the
average
for intermittent treatment is, 2-3 rounds.
That leaves another dilemma as to whether I want to go on intermittent
again.
The first time around on ADT was terrible. Side effects were, moderate hot
flashes
with sweats, weight gain of 25 pounds, muscle loss, my belly and arms became
like
jello. my breasts grew larger than my wife's, I developed type II diabetes,
and serious
fatigue.
My wife laughed when I sat in my lounge chair, she said I filled both
corners.
This time around the hot flashes are not as bad, fatigue is the culprit, as
well as muscle
loss. according to my Onc, there is evidence that ADT does effect the heart.
I am having ejection fraction done every six months.
Bob
"Steve Kramer" <skramer@cinci.rr.com> wrote in message
news:h16349$ocg$2@news.eternal-september.org...
> "oaktree" <rjcaron65@msn.com> wrote in message
> news:h13d2m$2l2$1@news.eternal-september.org...
> : It's been ages since I've posted an update,but I still lurk frequently.
> : I am back on Lupron/Casodex. Last lab report my testosterone is starting
> : to climb, I hope that is not a indicator of the start of ADT failure.
> : Side effects the second time around are; hot flashes are not as bad,
> : fatigue is much worse. I have no energy at all.
> : Been trying to shed some weight since January. only lost ten pounds.
> : Averaging about 1500-1600 calories a day. Doctor says its much harder
> : with low testosterone levels.
> :
>
>
> Welcome back, Oak!!!
>
> The good news is that your PSA is back under the radar and has been for
> all
> of 2009. Your cancer is on its knees. I see no indication that your ADT
> is
> failing. I don't know what the average length of time is for a successful
> ADT patient, but my doc has had two of his patients go 15 years without
> failure. I'm trying to beat that.
>
> What are you doing to mitigate the side effects? I do some of my best
> mitigation by walking three, four, or five times a week and between 2.5
> and
> 3.4 miles depending on at which park I walk. I bullied through or just
> accepted as fact other side effects, but there are medications that can
> help
> you mitigate most of them.
>
> Interestingly, in a recent three-year study posted at PCRI, 90% of all ADT
> patients suffered some side effect, including 89% of which had hot
> flashes,
> 66% grew breasts, and 50% had high cholesterol. 27% also had bone loss,
> so
> you should make sure to keep that in check too. In the cases of men with
> these issues, 91% did nothing about the breasts, 83% did nothing about hot
> flashes, and 59% did nothing about bone loss.
>
> My advice: Relax about the cancer. You're fighting it off. But get
> together with your medical team and have your side effects treated.
>
> --
> 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 undetectable since; last checked on 06/04/09
> Illegitimati non carborundum
>
>

"oaktree" <rjcaron65@msn.com> wrote in message
news:h184m4$mk0$1@news.eternal-september.org...


: ADT, has done a job on any muscle I had.
: My problem is that I should have been on top of my weight problem at the
: very
: beginning of this fight.
: Bob

It's never too late, Bob. I started walking within a few days of being
diagnosed, but I wasn't losing weight until I started lifting weights five
months ago. To remind you of the perspective, that means from November 2000
to July 2003, I walked and never lost weight. From July 2003, when I went
on ADT, I went from 310 or so to 357 by January 2009. Since adding weight
lifting to my regimen, I've gone from 357 in January to 330 yesterday
morning. I also doubled my capacity for lifting weights on almost every
machine. I was having problems with steps in December 2008 and started leg
pressing 75 pounds eight times. Now I'm leg pressing 295 pounds eight times
and tomorrow it will be nine times. My biceps were able to lift a meager 30
pounds eight times in December are now doing 65 pounds. Quite literally,
every weight-bearing muscle in my body is strengthened and I'm still losing
weight. Will I get back to a svelte 240? Not a chance. Am I still too
fat? Hell yes. But my quality of life (and clothing) is much improved.

If you have to start at 10 pounds (which is where I started with shoulder
presses), then start at 10 pounds. Take your time in working up and you
will be amazed, as I am.

oaktree wrote:
> I.P.
> I have thought about trying 1000-1200 calories a day. My Doc is not
> in favor.
> I have done limited research; I am 6'2", weigh 265 pounds. according to
> local
> dietician, I need aprox. 2800 calories to maintain my present weight,
> and to lose
> one pound per week, I would need to drop down to 2300 calories. Base on
> avg. of
> 1500-1600, I should be losing two pounds per week.

Your dietitian is basing her advice on median guys from charts, not on
YOU and ADT. The same set of charts says I should lose 25 pounds, which
would literally kill me if my loss were all fat.

One answer to both our dilemmas is metabolic testing. That's the only
way to determine an individual's resting metabolism -- the fuel required
by our bodies at "idle", as in mindless rest. I'd guess castrate levels
of T drive it way down, leaving an awful lot of that 2,300 calories,
apparently even of 1,600 calories, with no place to go but the treadmill
or the bathroom scale. If you live near a city, you should be able to
find a gym or hospital or university or mobile metabolic test firm which
can test your metabolism and better advise you on your specific personal
metabolism and its calorie needs. It could be very a couple of hundred
bucks very well spent.

Another answer may be in prioritization. I will be very curious to see
at what point I will give up the most important activity of my life to
go on ADT. It sure wasn't at the "just in case RP didn't cure you", it
was not when my PSA jumped from <0.002 to 0.035, and it's not likely to
be when my PSA hits 0.5 or 1.0 with no other threat.

I.P.

oaktree wrote:

> I don't know what the average success time on ADT is, my Onc say's the
> average for intermittent treatment is, 2-3 rounds.

The "ADT success time" seems pretty meaningless to me, because it
includes the time we'd have if we do absolutely nothing or opt for just
one non-ADT treatment. The more useful metric, IMO, is a treatment's
therapeutic ratio, its ratio of benefit to harm. In the case of ADT,
benefit = added longevity, harm = reduction in quality of life.

The median benefit of ADT ran about 6-8 months as of four years ago,
with wide disparities no one can predict for an individual. The harm is
SEs, which have a wide variety of likelihoods, individual impact
variations, and additional treatments.

I.P.

"oaktree" <rjcaron65@msn.com> wrote in message
news:h186k0$6ds$1@news.eternal-september.org...

: I don't know what the average success time on ADT is, my Onc say's the
: average
: for intermittent treatment is, 2-3 rounds.

I would say that seems about average for what I've seen here, but then the
average periods between IADT and ADT varies greatly. Worse yet, there is no
sound study that has shown an increased longevity for straight ADT or for
IADT patients. Nor, finally, an average longevity for ADT patients. When I
started on RT in 2002, I was told that I had a 50/50 chance of living to
2012. When RT failed within a year, pragmatic calculations led me to
estimate that I'd be pushing up daisies by 2008. In the end, nobody really
knows.


: That leaves another dilemma as to whether I want to go on intermittent
: again.
: The first time around on ADT was terrible. Side effects were, moderate hot
: flashes
: with sweats, weight gain of 25 pounds, muscle loss, my belly and arms
became
: like
: jello. my breasts grew larger than my wife's, I developed type II
diabetes,
: and serious
: fatigue.

ADT SEs can be terrible. There is no doubt about that. Some, with damned
good reason, opt out after experiencing the SEs. But, I would advise
seeking help with the SEs before opting out.





--
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 undetectable since; last checked on 06/04/09
Illegitimati non carborundum