13 people graciously responded to the HT SE poll I initiated on Nov 19. The
very subjective "score", obviously biased by my personal criteria, is 4 with
minimal SEs, 4 with serious SEs (some with even more serious implications,
such as the potential for devastation from diabetes or osteoporosis), and 5
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.]

Lorelei's husband is definitely not an "emotionless zombie". He's not so
arrogant, not depressed, and the irritability is nothing new. [My wife would
appreciate that.]

Danny McCarty's only symptoms are occasional warm flashes; he still enjoys
exercise [ballet dancer - very impressive on HT!], friends, and family.
[Again, T levels?]

Tom C's worst effects are hot flashes and some anemia that was corrected
with B-12.

THESE SOUND MORE MAINSTREAM.

Marshall Schuon: Sometimes it is like the hard drive in my head has just
been wiped. [Loss of T often prevents the hippocampus from transferring new
data from "RAM to hard drive" (short-term to long-term storage).]

Bill Fla: the expected SEs - mainly fatigue and low energy. [Major setbacks
to me.]

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.

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.]

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

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.

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.

I.P.