Elephants and Tea - Precision Medicine - 10

Genetic Testing
USING TARGETED CHEMOTHERAPY
Putting a Price on Life
BY BROOKE BARNES
around a medical team, I had to quickly become
an expert in acronyms. CML, TKIs,
BCR-ABL and treatment free remission
(TFR) all became meaningful to me.
Something unique about my specifI
10
know
there's a saying that you can't put a price on
someone's life, but if I had to pick one for mine,
it would be $21,120 a month. That's roughly
the value of the medication I take daily to keep
my Chronic Myeloid Leukemia (CML) at bay while I go
on living my life. I definitely wasn't thankful to have been
diagnosed with this type of cancer at 27, but if it weren't for
those who have invested dollars and time into research and
development, my entire experience could have been different.
If I had received my diagnosis in college
instead of when I did, the drug that
I'm currently taking, called Bosulif, likely
wouldn't even have been an option for me.
Or if it had, it would have only been as part
of a clinical trial. If I had been diagnosed
earlier than college, my cancer could
have been a death sentence. CML doesn't
respond to traditional chemotherapy, so
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when the first of these targeted therapies,
called tyrosine kinase inhibitors (TKIs),
came out in 2001, it was a miracle drug.
When I was first diagnosed, I of course
did as much research as I could on these
medications. I wanted to know how they
worked, what I could expect in terms of
side effects, and any possible long-term
effects. Just like anyone else who has been
ic type of cancer is that scientists have
figured out the exact gene mutation that
causes this cancer to become active. This
discovery is what has enabled development
of medications that can block the
mutation and effectively turn the cancer
off. That's where BCR-ABL comes in. It's
the gene mutation that causes the cancer
and it's also the blood test that indicates
the percentage of my cells that have the
mutation. If that number is zero percent,
that means all my cells are normal and
healthy and doing what they're supposed
to do. Anything higher than that and there
are still cancer cells in my body. The TKIs
block the mutating cells and cause them to
stop acting weird and making me sick. My
treatment plan for now, and maybe forever,
is daily medication and blood work every
three months.
The last acronym in my list was TFR.
TFR stands for treatment free remission
and, for CML patients, refers to patients
discontinuing their TKIs while keeping
their cancer undetectable at zero percent.
While an exciting possibility, the results
of the trails for those attempting TFR are
mixed, and many people need to resume
taking their TKI after a period of time
to remain undetectable. This is a bit of a
tough subject for me because in the seven
years since I was diagnosed, I've never
been able to achieve that undetectable
state, making me ineligible to go off my
TKI and try for TFR.
While all of these targeted tests and medications
are remarkable and I feel lucky to
have them available, there have been some
aspects of my experience that have been
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Elephants and Tea - Precision Medicine

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