Miracles and Wonders
Advice for survivors and caregivers
Page 1
  • Every cancer is different
  • Statistics are just numbers
  • Be prepared
  • Take notes
  • Keep a chemo journal
Page 2
  • The power of prayer
  • Share the burden
  • Sometimes you just need to cry
  • Stay positive when you can
  • Everyone knows a cancer victim and/or survivor
  • Be careful on the web
Page 3 (this page)
  • Clinical trials and research studies
  • Cheap wigs and other bad advice
  • Be assertive when necessary
Page 4
  • The importance of feeling normal
  • Don't blame yourself

Clinical trials and research studies

    During Debbie's treatment there were several occasions when one of her
    doctor's brought up the subject of a clinical trial or research study that might be
    worth considering as an option. The first was an alternative to the standard six
    rounds of dual agent chemotherapy, that involved a very high dose of
    chemotherapy that had to be followed with a stem cell transplant. This would
    have been a good option if the initial rounds of chemotherapy had shown some
    effectiveness but did not seem likely to produce a complete response. Luckily
    Deb's response to the standard therapy was very near the "ideal" response as
    described in the literature so we never had to pursue this more aggressive option.
    Later, after she was in remission, there was the possibility of joining a study that
    used a new monoclonal antibody drug, Ovarex, as a maintenance therapy to try
    to prevent any recurrence by attacking the new cancer cells as soon as they
    begin to produce the CA-125 antibody. Deb just missed meeting all of the criteria
    for this study, so again we never had to make a decision to join this study.

    We were almost relieved that we never had to face the option of pursuing a
    clinical trial because it was going to be an extremely difficult decision. In a phase
    II trial, the treatment generally has shown some promise during the earlier testing
    but its effectiveness has not been fully established. Likewise, no serious side
    effects were uncovered in the earlier work but there is still a significant
    possibility that new side effects will be uncovered. And, finally, patients in a
    phase two trial are typically randomly assigned to two groups only one of which
    receives the treatment that is being studied. The other group is used as a control
    and receives only a placebo. So when you enter a trial, the drug or treatment
    may have unexpected side effects, it may or may not be effective, and you may
    not even receive it. So it feels like you are taking a big risk without a lot of
    information on which to base your decision.

    Some patients are anxious to participate in clinical trials or studies, even seeking
    them out on the Internet and bringing them to their doctor's attention, because
    they want any additional chance to be cured, but other's, like us, worry about
    the potential side effects and other draw backs (for example the Ovarex study
    required routine CT scans to check for progression instead of a less invasive
    blood test). In the end it's a personal decision, and you have to trust your
    instincts because there will rarely be a clear and convincing argument one way
    or the other. Your doctor is also unlikely to express a strong opinion since by
    definition a clinical trial is not the accepted standard of care. So he or she will
    most likely simply tell you both the risks and the opportunities and leave the final
    decision to you.

Cheap wigs and other bad advice

    During the course of your treatment you will get a wide array of advice on many
    different aspects of your disease and treatment. The advice may come from
    doctors, nurses, social workers, clergy, friends, relatives, etc.  So you need to
    be aware that not all of the advise, even from the experts, will be right for you.

    One example that we encountered was from our pre-chemotherapy education
    session at our oncologist's office. Our nurse was explaining what to expect and
    advised us not to rush out and buy an expensive wig. She said that husband's
    want to spend the money just to show how much they care, but that the patients
    are just as happy with a cheap wig and besides the cheap synthetic wigs are
    easier to care for. We ignored that advice, went to a nice wig shop, and picked
    out the wig that Debbie liked best without even looking at prices. She got one
    that looked so much like her natural hair that even I couldn't tell it was a wig at
    first glance. This turned out to be very important. Once Deb had lost her hair,
    she became very self conscious about "looking normal". She was really paranoid
    that everyone was going to know that she had cancer because she was wearing
    a wig, and she hated the idea that everywhere she went people would be thinking
    "Oh, that poor woman has cancer". So having a wig that looked so natural really
    helped relieve this concern. If we had taken this advice and got a less expensive
    wig it might still have looked nice but it wouldn't have looked like Deb's hair so
    she would have had one extra thing to worry about whenever we went out.

    The point of this section is that you need to recognize that most advice that isn't
    strictly medical in nature is based on what has worked for most patients so it
    may or may not be the right approach for you and it is appropriate for you to
    consider this when evaluating whether or not to accept any specific bit of advise.

Be assertive when necessary

    Medications are a special challenge for Debbie. She always seems to get the
    most annoying (but not most serious) side effects, and she seems to react more
    strongly to the positive effects as well. We have no idea if this is biochemical in
    nature or just some variant of the placebo effect, but it is definitely real and very
    consistent. If most people need two aspirin to knock out a headache, Deb can
    get by with one or even a half. This caused problems for us in the early days of
    her treatment. She was having a little pain from the surgery, so they gave her
    pain killers. The pain killers made her nauseous so they gave her another
    medication for that, and it made her lethargic which left her with nothing to do
    but lay there and think about how bad she felt. Basically, the doctors and nurses
    were addressing her symptoms in the normal way but the side effects made her
    feel much worse than the original complaint.

    Once Deb realized what was happening, she was able to make good decisions
    about when to treat her symptoms and, more importantly, when not to. But this
    sometimes made it difficult to deal with the medical professionals. Deb didn't
    want to keep any symptoms secret for fear that it might be important, so she
    would mention her pain (or whatever) and her doctor or nurse practitioner
    would immediately reach for the prescription pad. Sometimes Deb had to be
    very insistent in her refusal to accept additional medication (or to negotiate for a
    smaller dosage) if it was only to relieve her discomfort. Some of her caregivers
    simply couldn't understand why someone wouldn't want to feel better, and none
    of them believed her when she tried to explain that the side effects would just
    make her feel worse.

    This was especially difficult during Chemotherapy when the nurses were
    following a standard play book that said "if patient complains of X, give 20mg of
    Y", but by being assertive, in the nicest possible way, Deb was able to exercise
    enough control over her treatment to allow her to take advantage of the
    knowledge of how her body reacts to improve her overall comfort level and
    minimize the unnecessary side effects.

    The point is that you need to be assertive enough in expressing your opinions
    and desires to make certain that your medical team hears you and understands
    your concerns. And you need to do this while keeping an open mind as you
    listen to their counter-arguments. You want to take an active role in your
    treatment, but in a way that does not disrupt your relationship with your
    doctors.  

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