Dear All,
I am after radical surgery and radiation therapy. I am in the second year of
hormone therapy with rising PSA.
I am looking for a trial that is relatively promising and can be entered. I
am living in Seattle but I could stay anywhere for a few months.
This message is to try to get info about trials using your collective
wisdom. Please let me know about trials that are accessible. Once I get an
info I will look into it in more detail and discuss it with my oncologist.
It goes without saying that I would grealy appreciate your help.
Best wishes,
Jake
Steve Jordan - 09 Oct 2007 22:27 GMT
(snip)
> I am looking for a trial that is relatively promising and can be entered. I
> am living in Seattle but I could stay anywhere for a few months.
Here is where to begin to search:
http://www.clinicaltrials.gov/ct/action/GetStudy
Good hunting!
Regards,
Steve J
"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
Thank you, Burns. Live long and prosper.
cmdrdata - 09 Oct 2007 22:48 GMT
> (snip)
>
[quoted text clipped - 4 lines]
>
> Good hunting!
Steve, out of curiosity, I checked this link and entered "prostate
cancer" and
got over 250 entries for studies that has keyword "prostate cancer".
So then I began searching for keyword "stereotactic" and/or
"hypofraction" since that is the study I am currently in, but it did
not find my
program, although it is still open and recruiting. Is this website
link exhaustive?
Thanks in advance.
Alan Meyer - 09 Oct 2007 23:40 GMT
> ...
> > Here is where to begin to search:http://www.clinicaltrials.gov/ct/action/GetStudy
[quoted text clipped - 8 lines]
> link exhaustive?
> Thanks in advance.
I believe that both the clinicaltrials.gov and cancer.gov databases
contain ALL clinical trials that have been registered with the U.S.
National Institutes of Health.
If you didn't find your trial some possibilities could be:
1. The trial is not registered with NIH - unlikely if you're
being treated at a reputable institution or one that receives
any NIH funding (a subset perhaps of reputable institutions.)
2. The keywords you searched under do not appear in the trial
document. It is entirely possible, for example, that synonyms
were used and that the search engine didn't recognize that, or
that the spelling is not exactly the same as what you used.
3. The trial is not really still open to new patients.
4. The trial is open to new patients somewhere, but the
"protocol update person" whose job it is to keep NIH informed
of changes didn't realize it.
5. NIH has the right information but hasn't published it yet.
However the delay is rarely very long. Changes in clinical
trials information are now published nightly on the NCI
website (www.cancer.gov) and delays typically only occur
when the database people receive some sort of conflicting
information that they have to resolve before publishing.
You might try the other search engine to see if you can find
it there:
http://www.cancer.gov/clinicaltrials/search/
Alan
Steve Jordan - 09 Oct 2007 23:44 GMT
(snip)
> Steve, out of curiosity, I checked this link and entered "prostate
> cancer" and got over 250 entries for studies that has keyword
> "prostate cancer". So then I began searching for keyword
> "stereotactic" and/or "hypofraction" since that is the study I am
> currently in, but it did not find my program, although it is still
> open and recruiting. Is this website link exhaustive?
Not to be flippant, I dunno; I've never tried to exhaust it.
But seriously. It's a fact that computers are literal-minded. If one
does not enter the exact parameters that the machinery has in its
electronic innards, it will respond with a null program. I suggest
checking the paperwork from the trial for info on what it's called by
the folks in charge.
> Thanks in advance.
Yer welcome. HTH.
Regards,
Steve J
"The difference between food and beer is that beer has some food value,
while food has no beer value"
-- Linda the waitress
Alan Meyer - 09 Oct 2007 22:32 GMT
> ... I am looking for a trial that is relatively promising and
> can be entered. ...
Jake,
I'm not qualified to say what trials are promising or which ones
you might qualify for, but I can recommend some places to look.
For information about what clinical trials are, how they work,
etc., see:
http://www.cancer.gov/clinicaltrials/learning.
For useful search capabilities, try:
http://www.cancer.gov/clinicaltrials/search/
Another government website with the same trials but a different
search engine is:
http://clinicaltrials.gov
If you find something of interest, don't hesitate to call the
phone number provided and ask questions. You will typically be
put in touch with a nurse who has experience with prostate cancer
and with the treatments proposed for the trial and can often give
you a lot of useful information that isn't in the text of the
trial description.
For what it's worth, my own experience in a National Cancer
Institute clinical trial was very positive. I was treated by (in
my opinion) first class physicians, given excellent consultation
and advice, and my treatment was free.
The NCI search screen (second URL above) shows 193 treatment
oriented trials treatment for recurrent prostate cancer. Most of
those will not be of interest to you, but at least a few will.
In my estimation, participation in a clinical trial is unlikely
to cure your cancer. It's a very long shot. Most treatments in
trials don't turn out to provide a lot of life extension. But
you might very well get some benefit and, who knows, you might
get lucky. At the very least, you will be using your condition
in a way that might help others too.
You mentioned that you will discuss the matter with your
oncologist. That's an excellent idea.
If your oncologist is not a medical oncologist who specializes in
prostate cancer, you should try to find one who does. The reason
I say that is that, if you have just had standard first line
hormone therapy (typically Lupron in the U.S.) you have not yet
exhausted all conventional treatment options. The other options
include double or triple ADT (addition of casodex and
dutasteride) "second line" hormone therapy (e.g., ketoconazole,
estrogen patches, maybe others) and chemotherapy. These
treatments won't cure you but might extend your life. Some men
get significant benefit from such treatments.
Best of luck to you.
Alan