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Medical Forum / Diseases and Disorders / Prostate Cancer / January 2004

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Lorelei - 13 Jan 2004 04:26 GMT
I usually frequent alt.support.diet.low-carb. someone over there recommended
this group to me. there are over 3500 posts here so I will be googling but I
wanted to ask right away.
anyone out there 40 or so with Stage 4(D) Prostate cancer metastasized to
lymph and bone?
My wonderful husband was diagnosed on his 40th birthday,. We left as planned
on our trip to the Dominican Republic and came back to a bone scan and more
bad news. He had no urinary or sexual  symptoms of prostate cancer
especially this far advanced. His PSA is over 800!!!!! he has a biopsy
scheduled for Thursday and a Dr's appt on Friday.
I am pretty shell-shocked right now, as I am sure many of you can
sympathize. Any advice, etc greatly appreciated.
Lori
Alan Meyer - 13 Jan 2004 05:14 GMT
> I usually frequent alt.support.diet.low-carb. someone over there recommended
> this group to me. there are over 3500 posts here so I will be googling but I
[quoted text clipped - 9 lines]
> sympathize. Any advice, etc greatly appreciated.
> Lori

Lori,

You and your husband have our sympathy.  I know how hard this is
for both of you.  He is very young to have developed this disease.

At this point, the standard prostate treatments - radiation or surgery,
are probably not effective since the cancer appears to have spread
beyond the prostate.  The major form of treatment that is still
effective is hormone suppression therapy (HT).  This can stop the
cancer from growing, but not kill it.  In rare individuals it can stop
the growth for decades, but a few years is a more usual outcome.

HT will likely add some years to your husband's life, and also give
you some time to look into other treatments.  There are clinical trials
underway on various types of chemotherapy, monoclonal antibodies,
anti-tumor viruses, anti-angiogenesis drugs, and other experimental
treatments.  One or more of these may turn out to be a breakthrough
treatment that can cure the disease, or at least hold it in remission
for an extended period.

You can get more information about prostate cancer in general
from many sources on the web.  One source that I'm familiar with
is the National Cancer Institute website.  Their prostate cancer
web pages begin at:

  http://cancer.gov/cancer_information/cancer_type/prostate/

From there you'll also be able to find information on clinical trials
of new therapies that might be helpful.

The long term outlook for a man with your husband's diagnosis
is currently not good.  But medical science is advancing rapidly.
It is definitely possible to postpone full-blown symptoms of the
disease with HT, and each year that the disease can be held
at bay is another year that the scientists have to come up with
new treatments.

I wish you the best in this terrible time.

  Alan
John Gorentz - 13 Jan 2004 05:24 GMT
> > bad news. He had no urinary or sexual  symptoms of prostate cancer
> > especially this far advanced. His PSA is over 800!!!!! he has a biopsy
> > scheduled for Thursday and a Dr's appt on Friday.
> > I am pretty shell-shocked right now, as I am sure many of you can
> > sympathize. Any advice, etc greatly appreciated.
> > Lori

> The long term outlook for a man with your husband's diagnosis
> is currently not good.  But medical science is advancing rapidly.
[quoted text clipped - 4 lines]
>
> I wish you the best in this terrible time.

I'll second Alan's wishes for you and your husband.  It is shocking just
to read about it.  It is hard to imagine what you are going through,
even though I'm a member of the PCa club.

As far as I know, Alan's answer was a good one.

One thing that's puzzling is this biopsy that's scheduled for Thursday.
If you already had a biopsy and diagnosis, what are they biopsying at
this point?   (Maybe I'm showing my ignorance of what the usual
procedures are at this point in your husband's situation.)

JohnG
Steve Kramer - 13 Jan 2004 11:51 GMT
I was wondering the same thing, but then I recalled only a biopsy will tell
his doc the Gleason score.  That'll be very important.  I find it highly
unlikely, but if it's a 7, for instance, there may be more alternatives than
if it is a 9 or 10.  I suspect the latter.

Signature

Prostate Cancer Survivor (so far), not a doctor
PSA 16 10/17/2000 @ 46
Biopsy 11/01/2000 G7 (3+4), T2c
RRP 12/15/2000
PSA  .1  .1  .1  .3  .4  .8
EBRT 05-07/2002 @ 47
PSA  .3 .2  .2  .2 .3
Erection 05/12/2003 @ 48
HTbegins 07/21/2003 @ 48
PSA  .1
Lupron 7/03, 8/03, 12/03

>
> > > bad news. He had no urinary or sexual  symptoms of prostate cancer
[quoted text clipped - 25 lines]
>
> JohnG
c palmer - 13 Jan 2004 09:03 GMT
hi lori - i'm sorry to hear about what's going on.  i did send you an
article to let you know that their are studies in this area and that it
is possible to get enrolled for an experimental treatment for offered to
the public.

~ curtis

knowledge is power - growing old is mandatory - growing wise is optional
c palmer - 13 Jan 2004 09:05 GMT
i just got the email sent back stating you have a spam blocker on your
email address.  if you want the article, let me know.

~ curtis

knowledge is power - growing old is mandatory - growing wise is optional
Steve Kramer - 13 Jan 2004 11:46 GMT
Lori,

Dwight Fitzmaurice is the only one here, that I know of, less than 41 when
diagnosed.  I think he was 39.  Prostate cancer at 40 is extremely rare.  It
is so rare, in fact, that when my father was having symptoms in 1972, they
sent him to a psychiatrist before a urologist.  He was 40 and was not
diagnosed until 42.

It is a tremendous shock, especially in that it is already advanced in your
husband.  All I can say is that there are treatments that will bring his PSA
down to less than 0.1 very quickly.  After that, it's a waiting game.
However, during the game, science is advancing tremendously and a cure is
possible in say 10 years.

Please stick around and keep us apprized.

Signature

Prostate Cancer Survivor (so far), not a doctor
PSA 16 10/17/2000 @ 46
Biopsy 11/01/2000 G7 (3+4), T2c
RRP 12/15/2000
PSA  .1  .1  .1  .3  .4  .8
EBRT 05-07/2002 @ 47
PSA  .3 .2  .2  .2 .3
Erection 05/12/2003 @ 48
HTbegins 07/21/2003 @ 48
PSA  .1
Lupron 7/03, 8/03, 12/03

> I usually frequent alt.support.diet.low-carb. someone over there recommended
> this group to me. there are over 3500 posts here so I will be googling but I
[quoted text clipped - 9 lines]
> sympathize. Any advice, etc greatly appreciated.
> Lori
MH - 13 Jan 2004 13:15 GMT
Hi, Lori....

I'm sure you must still be in shock! :(
As so many have already said, this is a very rare occurence.
Hormone Therapy would be the immediate plan of attack.
I know a guy who has been on HT for over 6 years... and his PCa has been
held at bay.  I wish the same for your husband... and that in the near
future some cure for this disease will be found.
Someone else mentioned clinical trials.... most definitely, check them out!!

My thoughts are with you both.  Please keep us posted.

MikeH

> I usually frequent alt.support.diet.low-carb. someone over there recommended
> this group to me. there are over 3500 posts here so I will be googling but I
[quoted text clipped - 9 lines]
> sympathize. Any advice, etc greatly appreciated.
> Lori
Lorelei - 13 Jan 2004 15:16 GMT
Our problem has been finding someone as young as him and as far progressed
as he is. Diagnosis was 12/31/03 and still no treatment other than decadron
to reduce some lymph node swelling.
He tells me that his PSA is 865. I knew it was over 800 but then I think I
quit listening.  It seems to me that some other type of treatment should
have been initiated by now?? I will show him all of your posts and
suggestions.
thank you
Lori
Steve Kramer - 14 Jan 2004 01:45 GMT
Don't panic, Lori.  865 is high.  Very high.  And, I agree with you that,
from a sanity point of view, two weeks is too long to wait for treatment.
However, prostate cancer does not grow as fast as other cancers, even in
40-year-olds.  If you are not confident in your doc, get a second opinion.
I suspect your doc might even be getting a second opinion.

Signature

Prostate Cancer Survivor (so far), not a doctor
PSA 16 10/17/2000 @ 46
Biopsy 11/01/2000 G7 (3+4), T2c
RRP 12/15/2000
PSA  .1  .1  .1  .3  .4  .8
EBRT 05-07/2002 @ 47
PSA  .3 .2  .2  .2 .3
Erection 05/12/2003 @ 48
HTbegins 07/21/2003 @ 48
PSA  .1
Lupron 7/03, 8/03, 12/03

> Our problem has been finding someone as young as him and as far progressed
> as he is. Diagnosis was 12/31/03 and still no treatment other than decadron
[quoted text clipped - 5 lines]
> thank you
> Lori
Carolyn Preston - 13 Jan 2004 18:07 GMT
> I usually frequent alt.support.diet.low-carb. someone over there recommended
> this group to me. there are over 3500 posts here so I will be googling but I
[quoted text clipped - 9 lines]
> sympathize. Any advice, etc greatly appreciated.
> Lori

Scary isn't it.

48 yrs old.  PSA 640 gleeson 7, T4, with widespread bone mets Easter
last year.

Zoladex knocked the PSA down to 14 but recently gone up to 16.
Started Casodex & awaiting PSA results later this week.

Have had 3 lots of monthly Zometa for the bone mets.  Only the right
shoulder playing up a bit so far.

Doesn't look good but there is help *out there*

John Preston
GSX1400
Rebecca Ford - 13 Jan 2004 18:30 GMT
Lori,

I wish I could say something to help. My husband was diagnosed at 42 after
six months of elevated psas. How long he had it before--who knows? His,
however, was caught early. Only downside so far for us is positive surgical
margins. I can only imagine what you are going through. If I can do
anything, lend an ear or a shoulder, let me know.

Signature

Rebecca Ford

> I usually frequent alt.support.diet.low-carb. someone over there recommended
> this group to me. there are over 3500 posts here so I will be googling but I
[quoted text clipped - 9 lines]
> sympathize. Any advice, etc greatly appreciated.
> Lori
PAUL KRAUSE - 13 Jan 2004 20:17 GMT
i cannot give you advice, but i can give my prayers and hope. all things
are possible when we pray.
cured? - 13 Jan 2004 21:37 GMT
Lori ,Try this link for Neutron therapy it has been around for awhile is
very effective for advance cases.Good luck! I was 45 when they told me, it
was like being hit by a truck.
http://www-bd.fnal.gov/ntf/ntf_home.html
Alan Meyer - 13 Jan 2004 23:51 GMT
> Lori ,Try this link for Neutron therapy it has been around for awhile is
> very effective for advance cases.Good luck! I was 45 when they told me, it
> was like being hit by a truck.
> http://www-bd.fnal.gov/ntf/ntf_home.html

Do you know if there are any published results on this?

I did a search on "neutron therapy prostate cancer metastases" in Pubmed
and got only 12 hits.  A number were for studies on mice showing promising
results.  But two ominous citations were to a pair of studies in Britain in
1990/91 in which neutron treated patients did worse than conventional
XRay (photon) treated patients.

I have no idea if what they did in Britain was like what is being done
at Fermilab - which is certainly a reputable institution.

  Alan
Beverley - 15 Jan 2004 02:04 GMT
I know of another person who is in the same boat but is a little bit older.
I think maybe you might find his wife a good source of information and
support. They are a great couple. Email me and I'll pass your email addy
along to them.
Bev

> I usually frequent alt.support.diet.low-carb. someone over there recommended
> this group to me. there are over 3500 posts here so I will be googling but I
[quoted text clipped - 9 lines]
> sympathize. Any advice, etc greatly appreciated.
> Lori
 
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