Several people who commented on FB about my most recent
Cancer Couple post mentioned being an advocate for yourself with your
doctors. I think this is very important,
and part of my perspective comes from my father’s treatment for melanoma in the
1970’s at M D Anderson.
His original melanoma and associated lymph nodes were removed
from his back in Corpus Christi, but when the melanoma returned a few months
later in a lymph node under his arm, he decided to go to M D Anderson for
treatment. After surgery they threw a
variety of treatments at him, probably all that were being tested at the
time. They thought his cellular immune
system was responding weakly, so he was treated with BCG (Bacillus
Calmette-Guerin). This required my
mother to scratch the outline of a three-by-three matrix of boxes on his skin
and then rub the bacillus into the scratches.
When his cellular immune system was strong, the scratches would
demonstrate a response by becoming inflamed.
By the end of his treatment, he had matrices all over his body like pro
football players have tattoos today.
They tried another immune treatment that I’m not clear about. They may have grown his tumor cells and his
killer t-cells in the lab, mixed them up, separated the t-cells and injected
them back into his bloodstream hoping that they were fortified and would be
active against any residual cells.
Finally they used a nasty chemotherapy agent called DTIC which put him
into a state of extreme nausea and fatigue for several days.
After a number of treatments with DTIC and BCG, my father
told me he was under tremendous stress because all he could think about between
DTIC infusions was his dread of the next infusion. As a graduate student at UT, I had access to
the Texas Medical Society library in Austin and read all I could find on
melanoma. I was also reading about
research on how stress depresses the cellular immune response in some
people. After my father told me about
his pervasive stress from the DTIC, I wrote to his oncologist. I told him that my father would never tell
him about the stress associated with the DTIC and asked whether the DTIC might
be reducing the effectiveness of other treatments. Perhaps it had done all it could and should
be terminated. He wrote a nice letter
back saying that if my dad had asked that the treatment be stopped, he would
have done it, but he couldn’t do so on my request. At the next DTIC infusion my father again did
not tell his doctor about how hard the chemo had become, and he passed out from
the stress during the infusion. The
doctor stopped the DTIC. A few days
later when my mother gave him his next BCG treatment, he had the strongest
reaction he had ever had. I believe he
even had fever that time. His reaction
seemed to me to demonstrate the impact of stress on some people’s immune
system, and the importance of being frank with your doctor about how the
treatment is going.
My advice to new cancer patients is to learn all they can
about their disease. Your treatments may
not be routine and well understood but derived from thinking at the edge of
scientific knowledge. If you have any
concerns about how your treatment is going, tell your doctor—better to ask
about your concerns that to carry the stress of wondering in silence. Remember, however, to go to established,
respected sources such as MD Anderson, the Mayo Clinic, the National Cancer
Institute, etc. There’s a lot of whacko
information out there on Dr. Google that you should be leery of. Then discuss whatever questions you have with
your oncologist. I’ve been very
fortunate to have doctors and surgeons who admit the limits of scientific
knowledge and acknowledge that the optimum treatments have not been
discovered. Progress in cancer treatment
has been made and is being made, like Gleevec, Jana’s miracle drug, but there
is much to be learned—many questions yet to be answered—so don’t be shy about
asking questions or expressing your needs.
In case you are wondering, my father beat melanoma which did
not happen often at that time. But
ironically he beat cancer only to die of Alzheimer’s some years later.
