Treatments for hormone refractory cancer - was: Monthly update

[Guest guest]

For those who don't know about it, there is a compendium of treatments for

advanced, hormone refractory prostate cancer online at:

http://www.hrpca.org/proventreatments.htm

I'd also like to suggest that people consider participating in clinical trials

of new treatments.  A good source for information about such trials in the U.S.

is:

http://www.cancer.gov/clinicaltrials/search/results?protocolsearchid=9387872

There are currently 64 trials registered with the National Cancer Institute for

treatment of hormone refractory prostate cancer.

A fuller listing of 421 trials can be found here:

http://www.cancer.gov/clinicaltrials/search/results?protocolsearchid=6276579 & ver\

s=1

Click " Refine Search " to narrow down the search criteria.

The UK, Canada, and other countries also have websites with information about

clinical trials.

Clinical trials have a number of interesting aspects to them:

1. You may get lucky and get treated with an investigational drug that actually

works better than the existing treatments.

This happens.  However, one shouldn't be too optimistic since most drugs don't

pan out, or only pan out for some patients and not others - though occasionally

a patient hits the jackpot and gets something that really works for him,

possibly years before it is available to the general community.

2. You will probably be dealing with doctors who are doing research as well as

clinical practice.

Unlike many doctors who are only in clinical practice, these researchers are

usually keeping up with the literature and have an interest in understanding the

underlying biology, not just a set of recipes that say " if the patients has

this, give him a shot of that. "    They typically know more than your average

medical oncologist.

3. You will likely get more extensive testing and examinations.

Scientists working on clinical trials have to know as many patient variables as

possible.  They often do more testing and scanning than the average oncologist

(some of whom do hardly any) and may form a better picture of your disease.

4. Cost may be lower.

I was in a trial of MRI guided radiation.  I'm sure that it would have cost

$50,000 or more in a private hospital.  But the entire cost was paid by the

trial sponsor (the National Cancer Institute.)  I paid nothing either for the

treatment or the followup.  I was even able to park for free at the hospital.

This is particularly useful for patients who have limited or no insurance.

5. You will be helping others.

Whether you win or lose, the cancer community wins by gaining more knowledge. 

I'm not sure how many of the treatments we have today would exist if there were

no patients willing to enter clinical trials.  Even if they did exist, without

trials we wouldn't know if they were effective.

    Alan

[Guest guest]

More notes on clinical trials:

When searching for trials we would, obviously, search for trials of treatments

for prostate cancer.  Less obviously, we can also search for trials of

treatments for " solid tumors " .  There are quite a few of those.

Some treatments are not specific for particular cancers but are designed to help

people with solid tumors (breast, prostate, lung, colon, and many others, but

not Leukemia and other blood cancers.)  For example, " anti-angiogenesis " drugs

that suppress the body's tendency to produce new blood vessels, might be

effective on many different kinds of cancers.

Searching for trials requires patience and perseverance.  There are a lot of

them.  Most of them are not applicable to any particular patient.  So there's a

lot of homework to do.

If you think a particular trial is of interest, make a list of all of your

questions about it and then call the phone number listed for the trial.  Your

call will probably be answered or returned by an oncology nurse who knows a fair

amount both about cancer and about the trial.  Most trials have a lot of trouble

recruiting patients and they're usually very happy to talk to a new prospect.

Don't be shy about asking questions.  Ask about costs, results from earlier

trials, follow up care, whether the nurse knows of a trial that might be more

relevant to you, etc.  Ask what she thinks your chances are of being accepted

into the trial and, if you qualify, when treatment could begin.  Ask whether

patients may benefit from the trial or whether it's only the science that is

expected to benefit.  Be polite, but frank.  I believe that most of the people

in this business really want to help you.  I don't think many people become

oncology nurses unless they have a sincere interest in helping patients. 

They're not in it for the cheerful fun, flowers and fresh air.

If you're still interested at the end of the phone call, ask if you can get an

appointment.  Ask if they'll charge you for it.  I suspect that you won't be

charged and, if nothing else, you'll be able to get a second opinion from

someone who knows a lot about PCa (though it might be a resident rather than the

lead researcher on the trial.)  Treat the appointment as a chance to get a

second opinion and prepare questions.

Good luck.

    Alan