Follow up - 3 month after end of radiation treatment

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nospam@for_me.com - 14 Jul 2005 10:39 GMT

I didn't have surgery as they said it was too late for that, so they
went into radiation treatment, followed up by extra high powered
treatment (3 zaps in 24 hours.)

After that, my PSA went back to 2, which the urologist said was about
as low as could be imagined considering I still had an intact
prostate.

At the three month review with the Oncologist, my PSA was up to 6, and
I figured it was time to be alarmed. He said not to panic yet.

I went to a specialist in prostate cancer affiliated with the U of
Washington. He said I should be very worried, and they should not have
discontinued my Lupron therapy (to which I react very badly.) I had
another PSA test and it was up to 12, essentially doubling in one
month. The expert said I was talking death in a year, two at the most
if I didn't do something quick.

About a month later, this week, I started taking DES to push my female
hormones (Lupron kills of my testosterone.) The doc said he had 10 or
so patients on DES that we getting good results. I am not sure when
they plan for another test or what I should suspect. Perhaps my PSA is
up to 24, and if the DES cut it back to 12 that would be good, I
guess. Without still another PSA test right now, which none of the
doctors are asking for, I don't know how to interpret the next PSA
result. Of course, if it drops down below 6 I will certainly call it a
success.

Eventually I think I will be forced back to Lupron, but then it only
works for so long (have no idea if it will be months or years) and
after that I am pretty much done for, unless one of these miracle
cures makes it out of R&D (still hoping for that.)

I turned 51 in May. Kinda wondering what to do with the rest of my
life.

email to cagoodey @ the google mail service

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Bill - 14 Jul 2005 15:33 GMT

Sorry for your unfortunate predicament, especially at 51. What was your
biopsy pathology and other diagnostics?

Bill Denton
RP 2/12/02
PSA .60
Memphis

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nospam@for_me.com - 15 Jul 2005 00:54 GMT

>Sorry for your unfortunate predicament, especially at 51. What was your
>biopsy pathology and other diagnostics?
[quoted text clipped - 3 lines]
>PSA .60
>Memphis

Uh, I am not sure how much use the initial diagnosis info is now,
since that was over a year ago, and I got to deal with what I have
now,
but the biopsy took 7 samples, and all were cancerous. I believe the
Gleason score was 4+3.

I have gone back and forth, with me interpreting the data as being
very bad, being given a bit of hope from the doctors, then finding out
I was right, and it is very bad.

For some reason when after all my radiation treatment, at the one
month follow-up with my urologist, who had been giving me the Lupron,
and this was about the end of the last 4 month shot, he didn't even
mention the possibility or desirabilty of having another Lupron shot.
I react badly to them, but I also react badly to finding I probably
just took another 4-6 months off my life span, short as it is.

cagoodey a t the big google mail company (how long before the spam
robots start the spamming - I get 100 or so a day on my yahoo
account!)

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Steve Kramer - 14 Jul 2005 22:42 GMT

I'm guessing you are familiar with the term "doubling" with regard to PCa.
If not, I would suggest you quickly read Dr. Patrick Walsh's Guide to
Surviving Prostate Cancer.

The doubling time you indicate is very bad indeed. If you doubling time is
one month, then you could expect this month to be 24 and next month to be
48. That being the case, I would not wait for a PSA 6 to celebrate. If you
have a 24 next month, the DES did something to slow it down. If you have a
12, it's been stopped in its tracks.... for now.

Signature

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
EBRT 05-07/2002 @ 47
PSA .34 .22 .15 .21 .32
Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05
PSA .07 .05 .06 .05
non Illegitimi carborundum

> I didn't have surgery as they said it was too late for that, so they
> went into radiation treatment, followed up by extra high powered
[quoted text clipped - 33 lines]
>
> email to cagoodey @ the google mail service

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Alan Meyer - 16 Jul 2005 21:24 GMT

> ...
> I went to a specialist in prostate cancer affiliated with the U of
[quoted text clipped - 3 lines]
> month. The expert said I was talking death in a year, two at the most
> if I didn't do something quick.

Your situation is difficult and it seems reasonable for you to prepare
for the worst. But you may still have more years left than you think.

Tell us more about your bad reaction to Lupron. Was it some sort of
life threatening reaction (e.g., severly elevated liver enzymes), or
was it just a quality of life issue - tiredness, hot flashes, loss of
libido?

If it's the latter - you can learn to deal with those. Extra rest and
exercise can manage the tiredness well. Loss of libido is a bummer
but, surprisingly, even without testosterone it's possible to have
and enjoy sex - it just takes more effort to get interested and
involved. Hot flashes - well - lots of women put up with them for
years and years.

Has the doctor talked to you about other hormone therapies besides DES?
Other alternatives include Zoladex (similar in action to Lupron) and
Casodex (which works in an entirely different way.)

There are clinical trials of treatments for metatstatic disease, but
they normally only accept people who are hormone refractory. In other
words, they want you to get all the benefit you can from a known
cancer fighter (HT) before they put you on an unknown cancer fighter.
Some of those experimental treatments, like phenoxodiol, have shown
great promise, and you may want to start educating yourself about them.

I know you feel like s**t. You may be full of fear and despair. All
of us have felt those things. This may be a time to examine and
adjust your philosophy of life.

All of us know from an early age that we are mortal. But we tend to
put it out of our minds and not face it until we see the actual killer
disease. When we get cancer it all gets more real to us and we get
depressed. But I don't think we have to be too depressed. We have
some time left and we should use that time in a productive way. We
should concentrate on important goals. We should do what we can for
our friends and family. We should show courage to our spouses and
our children and make whatever happens to us as easy as we can for
them. And you know what? If we do that, if we show courage to others,
we'll find that we have also done something for ourselves. We have
made the last years of our life more graceful, and more full of meaning
than if we drown ourselves in despair.

My advice is to fight the cancer. Take the hormone treatments.
Investigate clinical trials and be ready for them when the hormones
stop working. And at the same time, live so that whether you win
or lose the fight against cancer, you'll definitely win the fight
against depression and despair. That's one battle that it is in our
power to win even in the face of the worst imaginable disease.

Best of luck to you.

Alan

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Stephen Jordan - 17 Jul 2005 01:41 GMT

On July 16, Alan Meyer's inspirational response to "nospam" was:

>> ... I went to a specialist in prostate cancer affiliated with the U
>> of Washington. He said I should be very worried, and they should
>> not have discontinued my Lupron therapy (to which I react very
>> badly.) I had another PSA test and it was up to 12, essentially
>> doubling in one month. The expert said I was talking death in a
>> year, two at the most if I didn't do something quick.

Alan wrote, in pertinent part (I'm reluctant to snip anything, but the full
post appears upthread):

(snip)

> Tell us more about your bad reaction to Lupron. Was it some sort of
> life threatening reaction (e.g., severly elevated liver enzymes), or
> was it just a quality of life issue - tiredness, hot flashes, loss
> of libido?

Exactly the questions I have in mind.

As we know from others here, SE's can vary from none to unbearable. But
who decides? Answer: the patient; after (one hopes) weighing the SE's
versus the likely progresson of a disease that is a merciless killer.

The best examples I can think of just now are IP at one end of the scale and
me, somewhere right of center ;-)

> If it's the latter - you can learn to deal with those. Extra rest
> and exercise can manage the tiredness well. Loss of libido is a
> bummer but, surprisingly, even without testosterone it's possible to
> have and enjoy sex - it just takes more effort to get interested and
> involved. Hot flashes - well - lots of women put up with them for
> years and years.

Fortunately, hot flashes can be ameliorated.

On the Mayo Clinic website may be found a study of tx of hot flashes. See:
October 2004 issue of "Mayo Clinic Proceedings."

Yes, the SE's of ADT are in one respect (hot flashes, or, correctly,
flushes) similar to menopause symptoms. But not all men experience them,
and those that do have a wide variation in intensity and frequency. Hot
flashes/flushes can be reduced with certain antidepressants such as Paxil
(paroxetine) and Effexor (venlafaxine). These are SE'sof the drug. AIUI,
the dosage for hot flashes/flushes is less than that prescribed to treat
depression. Of course, all of us have reason to be depressed, so what the
heck ;-)

Another, older, tx is Megace (megestrol acetate) which , according to the
Mayo study, can reduce hot flashes/flushes by as much as 90%. Some
concern has been expressed about its possible adverse effect on PSA, but
my med onc is not impressed.

BTW, I am not using any of these meds because my hot flushes are annoying
but tolerable. This may not continue.

In many respects, the tx of PCa consists of choices of what SE's are
acceptable to the patient *after considering the alternative.*

> Has the doctor talked to you about other hormone therapies besides
> DES? Other alternatives include Zoladex (similar in action to Lupron)
> and Casodex (which works in an entirely different way.)

There also is Trelstar, a lesser-known LHRH agonist. I'm on it, now. FWIW,
"Snuffy" Myers, MD, a PCa survivor who may be known to some folks here,
tells me that he thinks it's good stuff.

(snip)

> Some ....... experimental treatments, like phenoxodiol, have shown
> great promise, and you may want to start educating yourself about
> them.

I've been trying, with only so-so success, to follow the phenoxodiol (PXL)
approval process. As of January, it was on the "fast track" for FDA
approval. Good luck learning exactly what that means, and where in the
process PXL is. Government websites are wonderlands of obfuscation.

One reason I'm interested is that, when administered as an adjuvant to
chemotherapy, it is said by the manufacturer to reduce the need for e.g.
Taxotere by, believe it or not, *90%* with a proportionate reduction of
SE's.

I think that, if proven in trials, this is as close to a PCa miracle drug as
I'm likely to see in my life. (I'm still hoping to be instantly killed by a
jealous husband, though just now it appears to be unlikely)

:-(

(ka-snip)

> ............................................We should show courage to
> our spouses and our children and make whatever happens to us as easy
[quoted text clipped - 9 lines]
> against depression and despair. That's one battle that it is in our
> power to win even in the face of the worst imaginable disease.

And in that regard, here is a bit of philosophy I found on another PCa site:

"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 on The Prostate
Problems Mailing List
Thank you, Burns.

Steve J

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