it’s gonna come calling if not for you
personally then for someone you love
your partner your parent or in the worst
case scenario your child in 2004 it was
my child Rafi was just four years old
when we learned he had brain cancer
inoperable size of an orange how could
this be happening within a few days our
little guy started 14 months of weekly
chemotherapy no chance for a cure
at best we might kick this down the road
but it didn’t work
Rafi’s tumor grew throughout the
treatment that’s when we learned that
there was no consensus on what to do
next so now instead of leaning on the
expertise of the medical community we as
parents had to reconcile the six
different opinions we got from seven
leading centers these range from a blunt
let him go to the most aggressive and
dangerous option multiple surgeries to
remove as much of the tumor as possible
we opted for the surgeries but the tumor
came roaring back I can’t begin to tell
you how hard it was to stand by helpless
and watch our precious child be taken
apart piece by piece you can’t begin to
imagine the pain by the spring of 2007
we’d run out of treatment options the
plan now was to begin palliative care
chemo drugs that might prolong our son’s
life but at great cost hospitalizations
infections transfusions to the
oncologist this was the logical
progression he didn’t seem to understand
that’s not how we wanted to spend what
time we had left with our son we were in
full crisis mode I went online to
research some chemo drugs and I’d
bookmarked a page I wanted to print
later when I went back to that site the
drug info was
and in its place was a press release out
of dr. Thomas safe Reed’s lab at Boston
College dr. safe Reed and his team had
shown that a ketogenic diet could slow
the progression of an aggressive form of
brain cancer
his premise brain tumors use a lot of
glucose to fuel their growth and a
ketogenic diet could limit that
availability there was even a brief
mention of a prior study in children
that certainly got my attention I’d
never heard of a ketogenic diet so I
emailed dr. Seyfried and soon I was
totally immersed in learning all that I
could I learned that a therapeutic
ketogenic diet for cancer limits
carbohydrates to about 5% of total
calories mostly as non starchy
vegetables nuts and seeds no room there
for grains starches legumes or even most
fruits and certainly no room for sugar
protein is limited as well just enough
to meet the body’s needs that’s in the
neighborhood of about 10% so if 5
percent of your calories are coming from
carbs and 10 percent from protein where
are you getting that other 85% from fats
and oils my guess that’s about double
what you take in now but let me be clear
what I’m talking about here is a
therapeutic ketogenic diet as an add-on
or adjunct in cancer the goal is to is
to inhibit the activities that allow
cancer to thrive sensitize cancer cells
to treatment and ramp up the internal
housekeeping that rids the cells of rids
dysfunctional cells but can you really
live on a diet that’s almost all fat of
course you can some tissue like heart
and muscle tissue actually prefers fats
but here’s the catch our brains can’t
use fats for energy so way back in our
history this extraordinary adaptation
made possible a third fuel
option ketone bodies energy bits made
from fat it’s normal and natural to make
ketones especially over night when our
bodies are in a fasting state in ketosis
tiny energy molecules are converted into
ketone bodies these ketone bodies are
readily taken up in the bloodstream and
circulate throughout the body including
the brain most normal cells act like
tiny hybrid engines seamlessly shifting
to the use of ketones when glucose is in
short supply fortunately most cancer
cells don’t have that flexibility when
fed ketones they suffer from the
equivalent of self malnutrition and that
slows down their rate of growth it makes
them more vulnerable to anti-cancer
therapies now ketones can can meet most
of the brain’s needs but not all you’re
still gonna need some glucose red blood
cells need glucose too and here’s where
another amazing adaptation kicks in the
waste product from burning fats is
converted in the liver back into glucose
yes we make our own glucose enough to
nourish our healthy cells without over
feeding cancer now most of what I just
said most cell biologists can agree with
most of what I just said where we tend
to part ways is on the very important
question of can this shift to ketosis
actually slow down cancer doctor Safe
Routes research pointed to yes but his
subjects were mice where was the proof
that a simple change in diet was going
to benefit our son well doctors Seyfried
shaved shared more about the the study
and children that he referenced in the
paper in the mid-1990s a doctoral
candidate at Case Western University had
conducted a simple eight-week trial she
placed two children with high grade
brain tumors on a ketogenic diet after
eight weeks PET scan showed that the
glucose uptake
and the tumors of both children had
dropped by over 20% and their caregivers
reported improve quality of life as well
that study and children had been
conducted nearly a decade before dr.
Safe Routes research so of course I had
more questions how are these kids doing
now and what did the researcher done
with this information well I learned
that at least one of the children was
still alive beating the odds I also
learned that after receiving her PhD the
researcher had moved on no one else had
shown any interest in taking this to the
next level until dr. Seyfried picked up
the reins another thing I learned that
this high fat low carb ketogenic diet
was not some fad diet like many of its
detractors still claim in fact the diets
been used as a treatment for epilepsy in
children since the 1920s it didn’t take
me long to get on board with giving this
a try after all what did we have to lose
my next step was to talk to Rafi’s
pediatric oncologist he rolled his eyes
and told me flat-out that the diet had
no chance of working he even got his
world-renowned buddy on the phone to
tell me that the ketogenic diet was for
fat people and we should stick to the
plan what plan they had nothing to offer
they had no medical or nutritional
objection to the diet so why would I let
these opinions stand in my way
that doesn’t mean I wasn’t scared in
fact I was terrified this was 2007 and
no one wanted the liability of putting a
child on this diet for cancer thankfully
Rafi’s local oncologist and his warm and
wonderful pediatrician agreed to monitor
him during a three-month trial of the
diet would follow the same protocol as
the kids for epilepsy so what did this
diet look like well we traded Rocky’s
beloved pasta for spaghetti squash and
zucchini strips we replaced his Sam
just with sliced meat roll-ups we baked
him delicious custards
and keto muffins and we loaded up on
healthy fats by adding butter and cream
and coconut oil to just about every meal
and thankfully Rafi really enjoyed a lot
of keto foods like avocados and
macadamia nuts at the end of three
months Rafi had an MRI frankly our
expectations were very low we were
hoping to see any sign of a response
instead we were blown away when we read
the report Rafi’s tumor had stopped
growing it had shrunk back from the
tumor margins and was smaller in all
dimensions imagine for one moment how it
felt to get that news of course we were
going to continue with the diet but I
knew I had to understand it better
I begged a leading hito nutritionist for
help and she agreed that 90-minute call
woke up something inside me the need to
go beyond what we already knew within a
month I was enrolled in a graduate
program in human nutrition a very
conventional program laser focused on
balanced diets but fortunately my quirky
interest in the ketogenic diet had the
wholehearted support of my senior
professors by the spring of 2010 I had
my degree in that entire three-year
period Rafi’s tumor was quiet and his
quality of life was simply amazing we
had kept the beast at bay
soin skeptics demand the proof I say I
lived with the proof and I’m here to
tell you that our experience is no
longer unique peer reviewed published
papers on the key to supporting the use
of the ketogenic diet in cancer are
piling up and you don’t need a clinical
trial to begin a diet in fact if your
doctor says diet doesn’t matter you just
so switch to a ketogenic diet or eat
potato chips
it’s your choice keto is here to stay
thankfully dr. SAF reads research caught
the eye of dr. C Dominick D’Agostino at
the University of South Florida there is
no doubt that their collaboration has
made waves that are reaching every Shore
but we need more research in people to
help us identify which cancers will
respond best to this therapy and which
may not respond at all we’ll learn more
about who’s a good candidate for a
ketogenic diet and we’ll test various
versions of the diet alongside
conventional care we’re getting closer
every day to understanding which
therapies including metabolic therapies
like hyperbaric oxygen and drug
therapies like metformin might be
combined in ways that could provide
better care and less toxicity be more
effective I believe that we’ll reach the
tipping point in how we view and treat
cancer through a grassroots movement
similar to what happened in hiv/aids
there the push that led to the first
successful combination of drugs came not
from the pharmaceutical trials but from
a small and very dedicated and
passionate group of researchers and
doctors and everyday people whose lives
were devastated by this disease their
success is a shining example of the
power we have as individuals
why else would pharmaceutical companies
urge you to talk to your doctor about
their drugs targeted nutrition is on the
horizon
not just in cancer but in a variety of
other diseases as well like obesity and
diabetes
and there’s such potential for the use
of kid
geneq therapies in neurodegenerative
diseases like Parkinson’s and even in
Alzheimer’s where billions of dollars
have been spent researching hundreds of
drugs and not a single one can reverse
the course of this disease the mechanics
of a ketogenic diet are simple but we
need experienced people to help people
with cancer get get past that minefield
of misinformation that pops up during
any internet search people need to be
part of a team and that team needs a
keto nutritionist and if I had my way a
life coach as well people thrive when
they feel supported and in the midst of
a health crisis like cancer no one
should have to live with the fear and
uncertainty of having to go it alone
look at what a company called verda is
doing their marketing their product a
medically supervised ketogenic diet to
corporations whose self insure I’m
convinced that their model of reversing
diabetes will soon get the recognition
it deserves for providing better care at
a lower cost while literally saving life
and limb
I’m waiting not very patiently for a
similar model in cancer a mom who lost
her son to cancer wrote to me recently
about a new initiative funding research
like most foundations the money would be
spent on developing and testing
pharmaceuticals she asked why aren’t
they spending more money upfront on
researching causes and prevention rather
than treating it once you get it and of
course she’s right
preventing a disease is far better than
trying to walk it back to be clear not
all cancer can be prevented and to be
honest we don’t yet know what the best
prevention diet will look like but I can
tell you I can assure you this that the
poor food environment and our misguided
nutritional guidelines are a recipe for
disaster for most of us it’s like
Russian
let you load the gun close your eyes
pull the trigger and hope that that
chamber will be empty we need to change
that grim picture not because not out of
fear for what will happen if we don’t
but for the joy of living a full life
and at the end of it
started by telling you something you
already knew you can’t hide from cancer
but you can be better prepared when it
comes calling diet does matter
yet its greatest potential is not in
what we know today but in what we’re
poised to learn in the coming months and
years our beautiful son died of his
disease in 2013 just after his 13th
birthday but brothy had lived an
extraordinary eight and a half years
past his diagnosis for six years the
ketogenic diet had kicked the can down
the road and for most of that time
Rafi lived a full life spending his
precious days doing what he loved with
the people who loved today in sharing my
son’s story the bright light he brought
to this world shines on that takes some of the pain out of my personal loss