Elephants and Tea - Precision Medicine - 5

Genetic Testing
LEARNING ABOUT GENETIC MUTATIONS
varieties. I even brewed my own beer at
home, but it was an easy choice between
beer or staying alive!
But in the last five years, a small but
growing market for 0 percent ABV " beer "
has emerged much to my delight. Even
without any a lcohol, unfortunately,
they cost just as much as real craft beer.
Occasionally, after a hard day at work I
find myself hankering for a real beer, and
thankfully most of the 0 percent beers do
a very good job of recreating the taste and
sensation of drinking a real beer.
I stayed on Alectinib for two years, but
I had to switch in 2019 when my cancer
started to progress. Unfortunately, the
cancer can develop resistance to the TKIs,
but luckily a third-generation medication,
Lorlatinib, was already in the clinical trial
phase. I had radiation to kill the progression
in my lungs and started the Lorlatinib
trial after " washing out " the Alectinib.
I've been on Lorlat inib ever since,
occasionally from a few strange visual
distortions.
In the next few weeks, I also had proton
therapy for the metastasis in my brain and
surgery to insert a plastic implant to correct
my vocal paralysis. Losing my voice
was the most shocking and unexpected
symptom of my cancer since I always took
it for granted. Until I had the surgery, I
usually had my parents answer the phone
for me when nurses called to schedule
various appointments. If my voice was especially
weak, I would have to write down
what I wanted to say so my parents could
then tell the nurses. It was cumbersome,
but less infuriating than trying to hoarsely
scream at the phone myself.
However, after a few months of taking
Crozotinib, I was suffering from persistently
elevated liver enzymes (AST and
ALT), which indicated liver damage (also
a known side effect). Dr. Morris told me
that I should try switching to the second
generation of TKI inhibitors known as
Alectinib, which was more effective and
had fewer side effects. I agreed and the
specialty pharmacy helped me start the
new medication.
Over the next few months, my liver
enzymes stabi l ized but were st i ll far
above the healthy range. In addition to a
primary oncologist and radiation oncologist,
I now added a liver specialist to my
rapidly growing medical team. Although
I had stopped drinking shortly after I was
diagnosed, the liver specialist forbade me
from drinking any alcohol at all, even so
called " non-alcoholic " beer, which can
still have up to 0.5 percent ABV.
Before I was diagnosed, craft beer was
my primary indulgence. I loved the immense
variety of the booming craft beer
industry-lagers, pale ales, India pale
ales, stouts, porters, and dozens of other
and the constant monitoring has never
stopped. I have my blood drawn every
month (which I despise), CT scans every
three months, and MRIs every six months.
That amounts to more than 40 scans in
the last seven years; luckily, I love MRIs!
I find the screeching and clanking to be
oddly melodic; usually I can even snooze
in the tube. In fact, some enterprising
musicians have remixed MRI noise into
electronic music.
In the five years since I switched to Lorlatinib,
I survived the COVID pandemic
and found a new job after being laid off.
I also found love and traveled frequently
with my new partner before we moved
in together. I also had a third round of
radiation to treat a stubborn tumor on
my spine.
Fortunately, I have great insurance and
haven't had any trouble paying for my Lorlatinib
since it costs about $20,000 for a 30day
supply! The only hiccup occurred when
my previous pharmacy benefit manager
(PBM) suddenly decided to stop paying
for the Lorlatinib. I only found out when
I received a vague one-sentence letter that
stated there was an " issue " processing my
ELEPHANTSANDTEA.ORG
PRECISION MEDICINE ISSUE 2024
5
http://www.ELEPHANTSANDTEA.ORG
Elephants and Tea - Precision Medicine

Table of Contents for the Digital Edition of Elephants and Tea - Precision Medicine
