The short answer: ADT is a bitch, but your only choices are a) do it now
or b) do it later when mets become noticeable or bad. Both decisions are
defensible, as benefits and side effects are highly variable.

Considerations abound in the long answer, beginning with my rough notes
from a very similar poll I initiated here on Nov 19, 2004. If you search
the group's archives on key words HT or ADT or Hormone back to then
you'll find hundreds of pages of ADT SE discussions. If you don't know
how to search the archives, let us know; it's a few keystrokes away.
(Put on your asbestos gloves and eyeshades; the discussions got hot
because it's an alarming topic.) It all started with

http://tinyurl.com/2bzhg5

titled "Hormone therapy side effects".

Tip: if you think this topic gets too long or heated or complicated,
realize your future, starting within weeks, may be dramatically affected
for better or worse by your decision.

From my notes:

Lud wrote:
I am in the same boat of SEs that you have - drugs seem to affect me
more than normal and smallest doses are to much. Being on treatment
for over 8 years now, I have been through several cycles as follows:
2 years ADT with Zoladex, 1 year off, 1 year of HDC (high dose Casodex
= 150 mg), 2 years ADT with Zoladex + IMRT radiation, 1 year TDE
(transdermal estradiol patches 100mcg x 6), 1 year partially off and 3
cycles of Taxotere and now LDK + HC (low dose Ketoconazole 200 mg x 3
with Hydrocortisone 20 mg + 10 mg).

My worst side effects were from the Zoladex Txs - in the sequence that
encountered them:

1-  Before starting Zoladex I had been on a vegan diet for 3 months
and felt really great - 3 months after starting Zoladex, I was totally
depressed and feeling very suicidal. I dug out that hole buy having
some protein every 2 hours ( I tried several anti-depressants and they
only made me groggy.

2- Luckily I did not have any major hot flashes - I believe they are
caused by declining estradiol levels but not everyone is susceptible.

3- Mental impairment was a major problem for me - short term memory,
ability to multi-task or keep track of more than 1 idea were all gone
over time. Only years later I found how to manage these to some degree
by using a 50 mcg estradiol patch, having more protein and higher fat
diet.

4- Emotional and psychological impairment also kicks in and seems to
be affected by diet - but after 18 months I found it totally down,
crying, fear etc. Estrogen patches do help.

5- Bone loss starts with the estradiol decline, I was on Fosamax for
4.5 years and then on Zometa - it kept the bone density from
declining.

6- Muscle tone loss - turned soft from lack of testosterone - exercise
would have helped but the mental will was not there.

6- The side effects became worse after 18 months and at 2 years of
treatment, I felt like a vegetable - I existed but was not able to do
much - I was so desperate that I had to stop Zoladex.

7- Must comment on the sexual SEs - yes libido was totally gone but
with manual stimulation and greater effort it was still possible to
have an orgasm, dry of course and not the sensation.

8- HDC had minimal side effects, only problem was that PSA control did
not last long. Looking back, my testosterone was high normal range, my
serum estradiol level was above men's high range and my DHT was way
above normal range despite being on Proscar and probably the cause of
PSA failure.

7- Estradiol patch therapy was a JOY - most debilitating SEs of
Zoladex were not there and I could out-argue my wife for the first
time. The emotional and mental changes due to the high testosterone
and zero testosterone were very interesting - I found I was thinking
and feeling differently than as a man or a eunuch. It was not a bad
experience. Unfortunately it did nothing for HRPC control.

8- Must add the SEs from the Keto Tx- 3 weeks on and the SEs are more
tolerable than Zoladex, it remains to be seen how it progresses. Great
news is that it is working against HRPC.

Over the years I have asked many patients about their side effects and
found that very few men admitted to having mental and emotional
problems from ADT, yet their wifes all said they had some. I hope men
would come forward to tell about their SEs and more importantly that
we all work at finding ways to counter these side effects. I hope this
helps someone.

Lud

On Jun 15, 10:10 am, "Bob C." <B...@Bob.org> wrote:

experiences

major

finding

can say

clarify

loss

creative

things,

Lupron,

male

√Slug wrote:

...

They gave me 2 four month lupron shots.  The first few months wasn't
bad and I even managed to have erections and emissions.   I wouldn't
want to be on lupron long term and not be able to be with a woman.

The problem was in the 5th or 6th month.   I had incredible fatigue,
was thirsty, pee'ing all the time.  My fasting blood sugar hit 300 and
my triglycerides went whack-o too.

The joint pain didn't bother me.  Neither did the hot flashes.  I had
both but that was minor compared to the outa control blood sugar.

For me, this wasn't a matter of "tolerating" the Lupron or "sucking it
up and toughing it out".  A 300 blood sugar is dangerous.

Not because it can cause long term injury such as kidney failure,
blindness, and so forth but because a 300 means that your brain isn't
working.   You're in a sugar fog all the time.

I'm amazed that I was able to drive.  At the worse, I wasn't able to do
any detail work, like type on the keyboard.

Before taking Lupron, I'd advise having a full up blood chemistry,
Testosterone, sugars, all the metabolics, cell counts, everything.
And get another done every two months at a minimum.

Then plot them on graph paper so you can see the trends.   If your
chemistries stay within your normal range, then great.  You can handle
the rest of it, joint pain, hot flashes, those are easy.

13 people graciously responded (a 14th was discarded because his T was
not low) to the HT SE poll I initiated on Nov 19. The very subjective
“score”, obviously biased by my personal criteria, is 2 with minimal
SEs, 5 with serious SEs (some with even more serious implications, such
as the potential for devastation from diabetes or osteoporosis), and 6
who were very hard hit or even devastated by their SEs. Here are
summaries of their comments, in increasing subjective order of
“seriosity”. I hope I haven’t conceded too much accuracy to brevity in
these condensations; feel free to correct any misconceptions I’ve
introduced, but since this isn’t scientific, details aren’t vital. I’ve
left out the references to impotence and loss of libido, because they’re
a given with no T. [And I’ve added a few editorial comments in
brackets.] The field is still open to, and I invite, more responses.

THE LUCKY ONES

Steve Kramer experienced minimal side effects over 16 months of HT [but
what are your T and PSA? Some say no SEs => no benefit.]

Tom C’s worst effects are hot flashes and some anemia that was corrected
with B-12. But he added later that he also had fatigue.

THESE SOUND MORE MAINSTREAM.

Casey Stengel
My side effects are hot flashes, loss of bone density, and elevated
glucose level [which his doc hasn’t mentioned is a common HT SE.]

For Tony, SEs were acceptable, mainly hot sweats, lack of energy and
some weight gain. The hot sweats were the most uncomfortable, as you
have to watch what you wear, short sleeve shirts are a must, and you
also have to choose cool seats in restaurants. [I HATE heat anyway, and
get either very irritable or very drowsy in temps most people prefer.
Don’t sleep much at temps over mid 60s, for example, preferring 50s. And
how bad’s a hot flush when one’s a mile out in the ocean in a full wet
suit and exercising extremely hard?]

THE SE’S AND THEIR IMPACTS WEIGHED MORE HEAVILY ON THE FAR SIDE OF THE
BELL CURVE:

Marshall Schuon: Sometimes it is like the hard drive in my head has just
been wiped. This memory loss is REALLY annoying! Zoladex also knocked me
flat, leaving me with no strength or energy. I really have never been so
weak in my life.  And I sleep at the drop of a hat. The hot flashes are
a pain.

The sexual side effects go without saying.  But I also have put on
weight and developed what I have heard referred to as "a Lupron
donut."  Arghh.

Oh yes, I also now have a problem with blanking on things -- a
short-term memory loss  which I understand is not uncommon

Bill Fla: the expected SEs – mainly fatigue and low energy.

John Loomis: w/HT, everything went north. I got achy, hot flashes, no
nuttin, and did not feel good. It hung around like a cloudy day. Lupron
or whatever is very hard on a man.
Hopefully you do not need that.

Mike: With four months of Lupron and Eulexin I had some hot flashes,
breast enlargement, and weight gain, and discovered a loss of bone
density four years later [his doc apparently never mentioned that
prospect]. I would avoid more HT unless it was absolutely necessary.

Banter: Lurpon/Casodex for 4 years now ... and feeling it. I relate to
much of what was discussed in terms of loss of emotions. It is a hard
thing to live with. I am irritable, but have redirected my 'emotions'
through writing poems. I remember as if in a dream what it use to be
like filled with passion, and to feel calm. I feel emotionless when it
comes to women.

Alan Meyer: My doctor recommended against HT, but I insisted when a
trial showed 88% 5 year disease-free rate vs 63% without it for
radiation patients with Gleason 7 – even though other trials show less
or no advantage. I had no depression or loss of concentration, but had
hot flashes and fatigue. Exercise got me through daily living adequately
but with no energy reserves. Arthritis symptoms in my hands and fingers,
SEs addressed on the Lupron website, started after the end of HT and
seem permanent. I also got dangerously elevated liver enzymes while on
Lupron. It took about six months after my last 3-month HT period for my
T to return fully.

Clarence Crow’s been on ADT2 for 7 weeks. “At 3 weeks waves of tiredness
struck, with fits of frustration, mood swings, undue stress,
intolerance, loss of purpose, no interest in my work and some fits of
depression with emotional outbursts. I had to cut my work week back to 3
days MAX. All my pre-existing ailments were exacerbated, especially my
OA and bowel problems. I stopped my Androcur [a UK antiandrogen], but
increased hot flashes drove me back to it. ADT sux!”

Dale P: Gleason 9, seminal vesicles destroyed, nodes involved -- big
incentives for post-RP HT. 20 months HT, then quit because I was sick of
the side effects, all of the normal ones you hear about. Terrible hot
flashes got worse with time. The weight gain was not too bad, as I kept
as active as I could. The mood swings and depression were a major pain
in the a.s. The worst and final straw for me was fatigue. It got worse
after the first year, and then got worse and worse as the months went
by. I could NOT do ANYTHING without getting extremely tired. If we went
out for dinner or a weekend trip, it would take me two days to recover.
No way to live. Many doctors I saw are against IAD, preferring proven
treatments until refraction, but I found one who lets pts do IAD if they
insist. I will likely go with him [the implication is that Dale demands
a break from the HT despite the risks, with which I strongly identify].

Sandi: My 60-yo husband had gleason 7 with seminal vesicle involvement
and positive margins. Oncologist recommended 2 years HT, but 9 months of
Lupron was enough. Debilitating SEs made it almost impossible to
function. He had no energy at all, making it quite difficult to work.
Continuous hot flashes seemed to get worse the longer he was on HT. My
positive husband suddenly became very withdrawal and depressed. I also
noticed "significant" changes in his cognitive abilities which really
was out of character for him. There was no QOL anymore - we felt like we
were just surviving. My husband spent more time in bed napping than
anything else because he didn't have the energy and he was too depressed
to want to do anything. After a month off HT, the hot flashes are less
frequent, fatigue still is an issue for him as well as the lack of
libido. I'm hopeful that in a few more months he will start feeling more
like himself. It seems the longer you are on the hormones, the longer it
takes to shake off all the side effects.

“NoSpam”
Shooting pains in some toe joints and right fingers, and several
physiological changes after 5-6 months on Lupron. The hot flashes don't
bother me; the major surprise is the extreme fatigue; four flights of
stairs exhausts me. I also have disorientation that affects detailed
mental work. Urination stings a bit.

Chuck:
Extreme, crushing, hammering bone and often-crippling joint pain; often
feeling like broken bones. Hot sweats. And that’s months after he gave
up Lupron because of its SEs.

George had devastating SEs. Two 4-mo Lupron shots followed by a one year
Viadur
implant. Extreme fatigue, hot flashes and now more joint and fracture-level
bone pain with my arthritis. QOL nose dive. Removed implant and withdrew
from ADT; hot flashes getting more intense.

Steve Jordan:

And ad infinitum

I.P.

(snip)

I cannot fault Dominic for asking that question.

But I must caution that my experience with ADT, as well as that of
anyone else, is absolutely no measure of what he might experience.
Notwithstanding undocumented arguments to the contrary, what helps me
might harm Dom, and vice versa.

He, if he has studied the documents on PCRI, must know what is possible.
What *he* might experience is pure guesswork.

Sorry, but that is the unvarnished fact.

Regards,

Steve J

"The thing is to expect nothing in particular, but (to) be aware of the
lack of enforceable guarantees or enforceable contracts with
nature/god/entropy as to the condition or durability of our bodies."
-- Brian Brunner, PCa survivor, December 12, 2005
Thank you, Brian.

And happy Thanksgiving to you.

Others have already given you a lot of information.  I'd like
to make a brief statement about side effects of hormone therapy
and then a longer one about clinical trials.

The side effects of HT can be a bitch, no doubt about it.  But
it is very important to fight against them.  Steve Kramer has been
on HT for longer than most men here but he's been pretty active
in fighting the side effects with exercise, sleep, and lots of water
and he seems to be battling successfully.

I was only on HT for four months (five or six if you consider how
long it actually took to wear off).  During that time I maintained
a rigorous exercise program.  My ability to exercise dropped
dramatically from what it had been before radiation and HT, but
it never dropped to zero.  I was able to maintain enough reserve
energy to go to work every day, lead a normal life, and never feel
down and out.  I even forced myself to have sex (I never would
have imagined I'd have to force myself) and, to my surprise and
delight, succeeded and enjoyed it.

Now about clinical trials.  I'd like to put in a few good words for
them.

Clinical trials have benefits for you and for the whole cancer
community.  Our sons will have better treatments available to
them because we participate in clinical trials.

If your experience in a clinical trial is like mine, you will
experience the following direct benefits:

1. You'll get more medical testing than would ever be done
for you in normal treatment.

2. You'll get access to a higher level of expertise than most men
can get.  The doctors and scientists who participate in clinical
trials are usually the best of the breed - the ones with the greatest
scientific knowledge.

3. You'll get more time with the docs.  My clinical trials doctors
had a much smaller patient load than most doctors and were able
to give me a fair amount of time.

4. You may benefit from more advanced treatment.  This is far
from certain, but it's a possibility.  Clinical trials are not done for
treatments that are thought to be worse than the standard
treatments.

5. You may have lower costs.  My treatment in a clinical trial was
free.  My insurance was not involved and there were no copays.
I don't know if that's true in the one you are investigating.  I have
gotten follow up care from very good doctors for over three years
now.

Good luck.

   Alan