> Dear All,
> I am on hormone therapy but it is failing, my PSA has increased
[quoted text clipped - 15 lines]
> Anyone has an idea how long such trials take? Going on placebo
> for a few months may be OK, but for years.....?
The best way to answer this question is to call the phone number
given for trial information. Then you'll hear an answer from the
horse's mouth, so to speak.
Don't be afraid to call or to ask any question at all. It is
virtually guaranteed that the nurse at the other end of the line
will have heard similar questions before and, if she is at all
good at her job, she'll understand the concerns and know the
answers.
Write down a list of questions:
How quickly can the researchers determine if you qualify for
the trial?
How soon would treatment start?
What is the treatment like?
What side effects might be experienced?
What are the chances of being assigned to placebo.
How often will progress be checked?
How is it checked? PSA? Other tests?
If your disease is progressing then how soon can you find out
whether you were on placebo or not? What options will you
have if you find that the disease is progressing?
Write down the answers. Maybe ask your daughter to listen in on
the call so she can write notes too and ask any questions that
you didn't think of.
Don't be shy about calling back if necessary. Your mileage may
vary, however my personal experience with clinical trials nurses
was that they cared a lot about patients and tried hard to be
helpful.
> Other question: I would be interested to get advice regarding
> nonpartisan reading material on Provenge and on the chemo. I
> would be especially interested in comparisons between the two.
I don't have answers to that. My guess is that chemo has more
side effects because it uses a chemical that attacks some healthy
cells as well as tumor cells whereas Provenge uses the body's
immune system to, presumably, attack only those cells expressing
PSA (or whatever it is that the immunotherapy targets).
I think there's a good chance that the nurse handling calls for
the study will also have experience with chemotherapy and can
give you good information about this.
I am guessing that different patients have different responses to
chemo and to provenge. Some benefit for an extended period of
time and others benefit very little. One reason for that is
simply that "cancer" is a disease caused by mutations in certain
parts of the DNA in prostate cells. Different men have different
mutations and experience different courses of the disease.
However, the nurse may have more information and perhaps she or
others in this group will be able to point you towards good
reading matter.
> -----It goes without saying that I would appreciate any other
> info you think would be relevant. Thank you for your
> attention, George
Clinical trials are a shot in the dark, there is no question
about that. But there are some side benefits that contribute to
making them worthwhile.
First of all, the people who conduct trials are usually
scientists as well as doctors. The ones I met knew a lot about
the disease and were up on the latest theory. You can get advice
and information from them that can be worth a great deal.
Secondly, clinical trials must always conduct very thorough
testing. They have to do that because they need to get as much
information as they can from the trials. They will very possibly
learn more about the specifics of your disease than your current
doctors know.
Thirdly, our participation is of potential benefit to all men who
follow us with this disease. In a very real way I think,
participating in a clinical trial gives a person a chance to have
something good come from his disease, and get a good feeling from
it.
Finally, I know all of this is agonizing and the future looks
bleak. Others of us are facing this now and all of us will face
it eventually. But don't let the prospect of death take away all
joy of life. There is some time remaining. Make the most of it.
Enjoy it as much as you can. Do some things you've always wanted
to do. Spend some time with family and friends.
We each face many tasks in our lives. We try to be good husbands
and fathers. We try to contribute to our work and our community.
We try to learn what we can. We try to do the right thing in
social and political life.
I believe we also have a final task. It is to face the end with
grace and dignity, to get the things done that need to be done,
to do for our families what we are able to do, to go out the way
we want to go out.
It's an achievable task. It's also a task from which I believe
that much personal satisfaction can be derived.
Well, each of us is different. I don't know if what I've said
is of value, but I hope so. It is meant with good intentions.
Best of luck.
Alan
regarding horm/therapy failure?if you were on mono.it should have been in
combinationx3
lupron(monthly)7.5mg/or higher+casodex 50mg daily+5mg proscar.if fail can
use nizoral or nilutamide or cytadren(must be taken with hydrocortisone&IS
LAST TAKEN IF NIZORAL&NILUTAMIDE FAIL.GETFROM PCRI.ORG/310-743-2117 SEP'T
7-9 ISSUE ON HORM/THERAPY ALSO FROM PAACTUSA.ORG 616-453-1477 NEWS
LETTERVOL.23,NUMBER 3 SEPTEMBER 2007 ON HORM/THERAPY IF CHEMO USE
TEXETERE+(ASK ONCOL)PROVENGE NOT APPROVED BY FDA(BAD MOVE)SPEAK TO
PCRI.ORG ON IT.LOTS CAN STILL BE DONE DON'T DISCOURAGE.