WHAT
TO DO FIRST -
YOUR ROAD MAP TO FIGHTING HRPCa
INTRODUCTION
Before proceeding any further, it is recommended that you read the chapters in the on-line booklet about
hormone refractory prostate cancer. This has been written with
newcomers in mind. A number of the articles contained within this web
site are not for new comers and assume some -- sometimes a lot -- of
knowledge about this stage of the disease. Then come back here and
read the particular pages that interest you.
If
you have been diagnosed as having hormone-refractory prostate cancer
by your doctor, you need to learn your options. There is a negative
attitude among some doctors (though hardly unanimous) about the value
of fighting HRPC. This is a difficult diagnosis to receive, but most
people—doctors included—are often unaware of the many options available
to you. The most critical decision you will make is the one to separate
yourself from negative people and to ally yourself with doctors and
others who believe in fighting against HRPC.
The
philosophy behind this web page and the associated support group is
a clear refusal to accept defeat; we are committed to fighting HRPC.
This
section is a roadmap that will take you well along the difficult path
of fighting this disease. Read through this entire section before starting
your work. That way you can decide which sections apply to you and what
you wish to do first. Many of the topics in this section are presented
in greater depth in other topics on this site.
The
situation today is that we know of no cure for hrpc. What we do know
is that there are many more strategies for extending survival than most
people realize. We will help you identify the options that you can take
to your medical team to get the best help from them in making the best
decisions possible. What we all seek is better answers that will extend
our survival until even better answers are found...perhaps even a cure.
DECIDE
TO TAKE CHARGE OF YOUR OWN TREATMENT
Having
made the decision to fight this disease, you must now make the decision
to take charge of your own treatment. Perhaps you’ve already done that.
If not, you need to realize that patients are steadily asserting control
over their own life decisions. You, too, can do this. In the HRPC support
group you can meet others who have taken control. We will help where
we can.
Taking
charge of your own treatment does not mean rejection of your medical
care providers. It means adjusting the relationship, taking the responsibility
for understanding medical technology, and becoming the leader among
the medical experts with whom you work.
Taking
charge may mean that your wife, your daughter or your son becomes the
medical team leader and information gatherer. That expression of love
is every bit as successful in this process; that person must assert
herself in the role of leader. On the support list we accept the family
caregiver as a full member of our group. Prostate cancer involves the
family.
IF
PAIN IS A CONCERN
If
pain is a concern, that must be confronted first in order that you can
focus on the many other issues. See Pain
Relief.
CHALLENGE
THE HRPC DIAGNOSIS
To
be thorough, the first step is to question the validity of the diagnosis
of hormone-refractory disease.
If
your hormone therapy involved the LHRH agonist (Lupron or Zoladex),
you need to verify that the treatment did indeed reduce your testosterone
to the required castrate level of <20 ng/ml. There should have been
regular blood tests for testosterone during the hormone treatment. Look
at those to see if the testosterone was suppressed to that level.
If
there were no tests for testosterone during the hormone therapy, this
is one of the first questions you need to address with your physician.
In some cases the normal dosage of Lupron or Zoladex does not reduce
the testosterone sufficiently to be effective at cancer suppression.
This issue needs to be resolved with your doctor.
If
it should happen that the testosterone was not reduced sufficiently,
it may be possible to resume some combination of hormone therapy to
control the cancer.
LOOK AT YOUR MEDICAL
TEAM
You
need to give your medical team a checkup to ensure that all of you agree
on who’s in charge and which way you are headed.
First,
it is good to have a local oncologist, who may not be a specialist in
prostate cancer. This individual will write many of your prescriptions
for drugs and tests and will be the technical confidante who cooperates
with you for the long run. It is essential that this individual accepts
and respects you (or your caregiver ) as the team leader. It is also
essential that this individual believe sincerely that it is worth fighting
against this disease. This should be a compassionate physician with
whom you can communicate fully and comfortably.
Equally
important is your responsibility to respect and help your physicians.
You will find that there are many things you can do, such as organizing
your disease history, that will help your doctor to help you. When you
find that doctor who fits your team, treasure him and let him know that
you appreciate his help.
Next,
you need one or more specialists who bring technical power to your team.
Ideally, your prostate cancer specialist is an oncologist or
a urologist whose practice is limited to prostate cancer. You will probably
have to travel to a university with a medical school to find such an
individual. You will probably have no more than one or two appointments
with this individual a year, so you should seek out the best doctor
even if you have to travel a considerable distance. The advice he provides
will guide your direction for an extended time. Interim communication
can take place effectively by phone, e-mail, fax, or letter.
If
you are coping with other serious medical conditions, you may need additional
medical specialists, such as cardiologists or other specialties.
From
time to time, you may also bring in an ad hoc member to the team for
special needs. A psychotherapist may help in case of depression. You
may decide to use a nutritionist, or an immunologist, or an alternative
practitioner. You may also choose to seek the help of a specialist in
areas such as visualization techniques, acupuncture, or some other
area that you feel will be helpful. And you may choose to have a team
member who assists in spiritual help.
LOCATE
THE METASTASES
It
is important to know the location and extent of metastases, as these
will figure in the decision on type of treatment. Bone metastases are
most common with prostate cancer; however, soft tissue tumors are not
unusual. Bone scans, CT scans or MRI will give the location of bone
tumors (and plain X-rays can aid in the evaluation). CT scans, MRIs and PET scans, can identify
tumors in soft tissue as well. Physical symptoms, such as pain or bleeding,
will also locate metastatic tumors.
YOUR
PC DIGEST (see the HRPC booklet chapter 6)
You
should be gathering copies of all medical reports and tests related
to your disease. Keep an organized medical file. Know where all your
x-rays and bone scans are kept. Know who has your tissue samples. You
will need this information from time to time.
The
PC digest is a simple organization of information that tells your story
from first diagnosis to the present. This document is an invention of
Dr. Stephen Strum, who describes it in his first issue of "PCRI
Insights" newsletter (refer to the home page section titled "Information
resources" to learn how to get this newsletter on-line. Follow
Dr. Strum’s guidance in developing your own PC digest. Use this document
to maintain a record of your own fight against PCa.
In
addition to the PC digest, you may also wish to provide a semi-log plot
of your PSA data. This graphic representation tells both you and your
doctor the progress of the disease as measured by this marker. Check
Dr. Myers’ "Prostate Forum" back-issue index for instructions
in plotting these data. It may also be of help to plot the PSA doubling
time as a more sensitive indicator to changes that occur in the PSA
values.
There
is a excellent service available, called MultiGraphs, for plotting PSA vs.
time and treatments. This is a free service of the Prostate Cancer
Research and Education Foundation. John
Fistere will run the program if you provide the data he requires. The
directions for Multigraph are located at:
http://www.pcref.org/multigraph.php and to contact John Fistere,
send an email to him at
multigraph@pcref.org
Another
useful data compilation is a table of your test results—blood, urine,
bone density. This works particularly well with a spreadsheet program.
It allows you to list the various tests in the first column; then the
results of the last several test series can be presented in following
columns. Show the normal ranges in one of the columns as a reference.
Then shade any test values that are outside the normal range to help
your doctors quickly identify possible problems.
If
you wish to learn more about the results of blood and other tests, there
is a "Pocket Guide to Diagnostic Tests," edited by D. Nicoll,
et al. and published by Appleton & Lange.
One
last tabulation is a list of drugs and supplements you take. For the
prescription drugs, track the dosage and the date you started. List
all the supplements and vitamins that you take, together with the dosage
and date started. For each item, list why you take it.
SUBSCRIBE
TO THE HRPC SUPPORT LIST
It
is helpful to know others who are fighting the same battle. That is
the purpose of the hrpc support list. See the home page section entitled
"On-line support list" for instructions on how to participate.
These are all individuals who, like yourself, are fighting hrpc or
their family members.
GET
A SECOND OPINION FROM P2P
In
order to make the best decision about which therapies to use, you want
to obtain a variety of perspectives on your disease. One of the most
valuable services made available to prostate cancer fighters is the P2P (Patient
to Physician) on-line support list. Physicians
associated with the Prostate Cancer Research Institute review pc digests
that have been submitted on-line; they provide diagnoses and treatment
recommendations that the patient can bring to his own doctor as expert
input. Note that P2P is an educational service.
P2P and the Prostate Pointers
website are supported by Us Too
International. To subscribe to P2P, go to
www.prostatepointers.org/mlist/mlist.html and click on the P2P link. Follow the instructions to subscribe
to the list. You will start receiving posts from this list; and these
will show you the type of pc digest to submit and the type of response
you can expect. This wonderfully generous service is free; however,
donations are encouraged to help this organization continue its fine
work.
SORT
OUT YOUR TREATMENT OPTIONS
At
this point you will begin to have sufficient input that you can begin
to see the treatment options available to you. Typically, these options
include High Dose Ketoconazole (HDK) plus hydrocortisone(HC), diethylstilbestrol(DES)
or Estrogen Patches, external beam radiation therapy, and chemotherapy.
Each choice will require some study on your part to make a good decision.
The hrpca support group is available to share their experiences with
you as you decide.
CHEMOTHERAPY
The
chemotherapy alternative covers a number of choices of individual agents,
as well as combinations of these. See the section entitled "Chemotherapy"
for guidance in making your decision about chemo.
CAN
A CLINICAL TRIAL HELP YOU?
In
your search for promising therapies, you may wish to consider the available
clinical trials. You should look carefully at these trials to decide
which is most likely to help you. Although there may be an idealistic
facet to this decision, you should examine these trials as carefully
and skeptically as any high-risk therapy. Your fundamental obligation
is to your family and those who love you and want to see you live.
You
need to question the trial providers regarding the probable benefit
to you, as well as the potential side effects. Do not ignore potentially
harmful or lethal side effects. You also need to determine who will
pay what costs associated with the trials. And you should ask what information
you will be given during the life of the trial. Trials frequently require
you to stop other medicines that may be doing some good for you. Also
keep in mind that Phase III trials usually include a placebo arm, which
means that you could undergo the trial without receiving the benefit
of the agent being tested.
There
is no doubt that a random, double-blind trial can provide the most compelling
scientific proof establishing the effectiveness of a new drug. Pharmaceuticals
and the medical community are motivated toward the development of better
drugs. Whether to participate should be decided only by you and those
you love.
WHAT
RESEARCH LOOKS PROMISING?
The
hrpc support group searches for new developments in prostate cancer
medicine. News is shared and discussed on-line. From time to time one
of the members will investigate a new development and publish a report
on this web site.
In
addition to subscribing to the newsletters of Dr. Myers,
www.prostateforum.com, and
PCRI Insights,
http://www.prostate-cancer.org,
the best way to keep up with new research is to participate in the on-line
support list.
EVALUATING
ALTERNATIVE THERAPIES
The
urge to experiment with alternative therapies is unavoidable. You will
do it. Everyone else has done it, at least several times. However, you
can approach this minefield prepared. Cancer "cures" grow
like weeds; everyone knows someone who....
If
you decide to try an alternative therapy, require proof that it works.
If the therapy is offered by a physician, ask for the medical journal
articles that establish its effectiveness. Then—if they exist—read them
to see whether they are as good as represented. If there are no documented
studies available, ask for the names and phone numbers of at least 10
prostate cancer patients who have benefited from the treatment. Then
call those people and discuss the treatment. Ask them for PSA data verifying
any successes. These are tough tests; but they are not unreasonable.
Although
it is tempting to believe a written or stated claim, ask yourself if
it is justified. Ask yourself if the offeror stands to gain financially
or career-wise should you buy his product/service. As complex a problem
as cancer is, should you believe that someone has a cure but is unable
to provide solid proof?
REVIEW
YOUR DIET
Your
diet is important to maintaining your health. You should be consuming
a low-fat diet, with no red meats or milk fat. Your meat should be limited
to fish, chicken and turkey. Your oils should be limited to olive oil.
The rest of your diet should include vegetables and grains.
If
you read the "Prostate Forum" newsletter, that will provide
you with detailed guidance on nutrition. Dr. Myers has also written a
cookbook entitled "Eating Your Way to Better Health: The Prostate
Forum Nutrition Guide." In addition to 150 pages of recipes, the
book has 50 pages explaining the elements of a diet that supports your
battle against prostate cancer.
The
Prostate Cancer Foundation (formerly CapCure) provides a wealth of information on diet and prostate cancer
as does the American Cancer Society.
CHECK
YOUR SUPPLEMENTS AND VITAMINS
Supplements and vitamins that may
be of benefit to you in your fight against prostate cancer include
high omega 3 fatty acids in form of EPA & DHA, selenium, lycopene,
vitamin D-3 and d-alpha tocopherol succinate and gamma E tocopherol.
You will probably add other
supplements to your diet depending on your situation.
GET
YOUR EXERCISE
Exercise
has so many benefits, it should never be forgotten. It enhances your
immune system. It improves your digestion and your appetite. It helps
you sleep better. It adds to your bodily strength. And, in this time
of emotional stress, it is an excellent tranquilizer and attitude lifter.
If
you are able, you should get a minimum of 30 minutes/day of aerobic
exercise (brisk walking) at least five days a week. You should also
add three days per week of weight training to maintain muscle bulk and
bone density.
GET
ENOUGH SLEEP
Get
as near to 8 hours of sleep each night if you can. Sufficient sleep
helps protect your physical system and helps you maintain a positive
spirit.
YOUR
FIGHTING SPIRIT
If
you have come this far, your determination is evidence of your fighting
spirit. It seems evident that people who want to live are the same people
who find ways to survive. This group is committed to surviving and fighting
hrpc.
CHECK
THE CONDITION OF YOUR BONES
Prostate
cancer has an affinity for the bones. It even grows better in bone than
in the prostate. In hrpc, bone metastases are almost a given. With this
reality comes a life-threatening danger.
Bone
metastases increase the risk of bone breaks. Furthermore, the hormone
therapy customarily used for prostate cancer carries an almost certain
risk of osteoporosis. From a practical standpoint, the body can tolerate
only so many breaks. Read the section entitled "Ensuring bone integrity"
to help you deal with this risk.
RESIST
THE DANGEROUS SIDE EFFECTS OF CANCER
All
types of cancer carry certain "side effects" that, in themselves,
can be lethal. L. M. Franks writes in the "Introduction to Cellular
and Molecular Biology" (Oxford University Press, 1997):
Tumor-related
events may cause death directly or indirectly depending on the site
of the tumor and the extent of spread. A common cause of death
is the involvement of vital organs, either by direct local invasion
or from distant metastases, for example in the brain, lung, or liver.
Rarely, death may be owing to hemorrhage. More often, anemia and
unexplained wasting may lead to decreased resistance to infection
so that terminal bronchopneumonia or infection of the urinary tract
(pyelonephritis) is common.
Although the cancer may be a
difficult force to resist, there are therapies to deal with anemia, loss
of weight, immune system dysfunction, and depression, which is also a
negative factor in survival.
PROTECT
YOUR IMMUNE SYSTEM
The
effect of the immune system on cancer is a widely debated issue. The
pendulum seems to be swinging toward recognizing the immune system as
a critical factor in fighting cancer. The work on vaccines and monoclonal
antibodies seems to be clear indication of the stake of the immune system
in defeating cancer.
Although
success has yet to be achieved, it makes sense to believe that the immune
system may be an answer to cancer and other diseases. As diseases mutate
genetically, they circumvent the drugs that once defeated them. The
immune system, likewise, has been outfoxed by prostate cancer that
has mutated to hrpc. The challenge is to help the immune system regain
the upper hand and re-learn how to kill the renegade cells.
BEGIN
EDUCATING YOURSELF
You
have a challenge of monumental proportions before you. All of us have,
at one time or another, faltered before the prospect of challenging
hrpc on a battlefield so technical that no human being yet has a good
grasp of it. When rational judgment tells us the task is too difficult,
we reject that judgment, and call on faith to help us continue the fight.
There are many others with us who feel as we do, and we will continue
the fight.
You
have begun a long process of learning more than you ever wished about
cancer, cellular biology, biochemistry, immunology, hematology, and
other medical specialties. We will share our efforts with you as we
continue the fight.
Bob
Benson, Howard Hansen, Bill Aishman
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