good morning and welcome to the third
day of hope
welcome to everyone here in queens and
to everyone watching this around the
world
at the end of everything today at six
o'clock we do have our closing
ceremonies we gladly invite everyone
here to join us in person and everyone
online to take part in the festivities
as well
and now to our next talk
cancer is the leading cause of death
worldwide
in the u.s the statistics are that one
out of every two people will have cancer
at some point in their lives including
me i've i've had cancer in the past
the way things are going in research
we'll never find a cure for it
we need a new way of thinking about this
a new approach
our next speaker will explain what
cancer really is
why so many get it and why it's been so
difficult to treat
everyone please welcome our next speaker
cara moon
hi
i'm caramoon
welcome to my talk for hope 2022
it's called hack cancer
how hackers can help save 9.5 million
lives a year
i'm going to start by telling you a
story
it's my story
it's a nightmare really but there's
still a chance it could turn into a
fairy tale
more on that later
so in july
2016 so it's uh six years ago
i was suddenly diagnosed with terminal
cancer
i was
36 at the time
two young kids
my
son was
eight and my daughter
three
and
i
was not really given any time to live
realistic life expectancy was seven to
nine months that's with treatment
the cancer had or perhaps i have rather
is bowel cancer
colorectal cancer
one of the most common cancers and
the most common
um
cancer killers in
most countries
um i found that the cancer had spread to
the
abdominal membrane
and that's why the life expectancy was
really
seven to nine months realistically
i quickly found out that in the uk there
was no
serious treatment being offered
i could have some treatment to help
extend my life a bit
maybe reach that nine months
um
you know possibly a bit
a bit longer so it's 36
i might kind of do slightly better than
the average
but i found out there were very few
outliers um in in 2016 so typically
cancer patients with uh
colon cancer spread to the abdominal
membrane
got seven to nine months of uh
life after diagnosis with treatment
so things were looking pretty bleak
um fortunately a friend of mine
eben upton who uh you probably know of
um he's uh
my co-founder of
raspberry pi
he told me that there are still some
of the hiv patients alive from like the
first waves of hiv in the 1980s
he said what had happened was
some patients would get access to new
drugs through clinical trials and this
would give them a little bit longer to
live
and
then another trial would come up
and
they'd get
a bit more time to live and
it's like they were kind of riding a
wave of new
drugs and of course now
hiv is
manageable as a chronic disease
and in fact recently i think there's
been some curative treatments as well
so um
that was my intention
could i
get access to some new treatments and
live a bit longer
um and
make it through
this as you might have gathered um i
lived a lot longer than
seven to nine months because i'm here
now
six years later
um
so
yeah my story is basically i realized
there was no proper treatment in the uk
i had the option of
treatment in japan because i'd been
spending the
past um
like
what past few years before the diagnosis
i've been uh
dividing my time between the uk and
japan most of the time in japan
so i knew i could get treated in japan
and i'd heard the cancer treatment and
health care in general in japan was
considerably better
i had not really had any health care in
japan
but i had heard it was very very good
cutting edge treatments
really high standard of clinical
excellence everywhere in all parts of
the healthcare system
with the notable exception of mental
health but that's a
topic for another time
so i went to japan and started getting
treated i went through a lot of
treatment
had four years of surgeries chemotherapy
various chemotherapies molecular
targeted therapy
various radiation therapies
metabolic therapy
i had hypothermia therapy so
heating up the cancer tumors to damage
the cancer and make chemotherapy work
better so i basically had all the kinds
of
cancer treatments except for hormone
treatment that wasn't relevant in
my case
after four years of doing
seven kinds of treatment and doing many
of them repeatedly
i got to the stage called ned ned no
evidence of disease
and
my immunotherapist said
you've got to this stage
um but you should keep doing treatment
for another year
to make the chance the cancer um
returning much lower
so i did
another 12 months
of
low-dose chemotherapy so this is
chemotherapy where you have a low dose
but there are no breaks it's just
chemotherapy every day
the side effects are
better than regular chemotherapy
um
but it's still yeah kind of unpleasant
so
now um
i'm a real outlier
my kind of case is actually going to be
written
um as a paper by a japanese surgeon
and
kind of provides um
a case study and a pathway for patients
to
hopefully get curative cancer treatment
in my case
if i can stay with no evidence of
disease for another year
so i've had two years so far no evidence
of this disease and for the past year
i've had no cancer treatment at all
if i can stay for another year um
probably by
getting some more immunotherapy
when i get to the three year mark of no
evidence for the disease the chance of
the cancer occurring
drops off dramatically
for colon cancer and it's different for
different cancers
some cancers
yeah tend to
recur in the first couple of years colon
cancer first three years
but if i can make it to three years with
no evidence of disease then the chance
of the
cancer coming back
drops off dramatically and then this
story really could be a fairy tale not a
nightmare
so i'm gonna just give you some
background information of like
understanding cancer
um and then i'm going to talk about my
kind of blueprint for curing cancer
and
finally how you scale that cure so that
everyone everywhere can get really
effective cancer treatments
um there's obviously big financial
barriers in in some countries
so
um
background for cancer
so i'm going to explain what cancer is
why you should care why there seems to
be so much cancer around
and why is it so hard to treat and
particularly why does it seem impossible
to cure
so what is cancer
or cancer is a group of diseases
and they seem to be diseases at the cell
level so to do with the cells of the
body
this may not be correct it may be more
operating at higher level
there are various models for trying to
understand cancer but the cellular model
seems to be at least useful
and it's a set of diseases that are to
do with
cell division and cell death
so what happens when cells divide so
when you get a new tissue growing
and what happens when cells are meant to
die
and i think you can probably guess that
um
yeah cancers there are many issues with
the cell division
um you see this here list of rapidly
dividing cells
these tumors growing inside people
and cell death
you hear about
people talk about the cells ignoring the
signals to die
or hiding from the immune system so the
immune system doesn't kill them
um these kind of cells when when they
become cancerous they form these tumors
and they spread so there are
non-cancerous tumors
but
one of the key points is that a
non-cancerous tumor doesn't spread it
might
grow it might grow a lot might cause a
problem if it's pushing against
an organ or against some nerves or
whatever
but a non-cancerous tumor shouldn't
spread around your body um
[Music]
non-cancerous tumors can become
cancerous
so
that's why
yeah it's a good idea to get
checked out medically quite regularly
for that kind of thing
um
so
[Music]
it's kind of unique that cancer can
spread around the body it's very odd
because when
rogue cells are like
floating around in your blood or your
lymphatic system
they're recognized and they get
killed
um
if they make it to somewhere
they shouldn't be able to like stick on
to the side of an organ and start
multiplying and growing
but cancer cells do right can cancer
cells get past the many mechanisms that
your body has against cancer
so that's what cancer really is so it's
it's a group of diseases we usually talk
about cancer in terms of the organ it
started in like where's the primary
tumor
um
that
may be
um
less useful in the future
maybe it's more important to look at the
genetic mutation that caused the cancer
um we're not really sure yet so i i say
we um i know quite a bit about cancer
because i've got it um but yeah i'm not
a doctor
so um i'm not giving any medical advice
any point in this talk um and i never
would give any medical advice
because i'm not a doctor
okay so
yeah we talk about like where the
primary tumor was so in my case for
example
um primary tumor was in the sigmoid
colon which is the s-shaped bit of your
large intestine
and unfortunately when my cancer was
found it had already spread to
lymph nodes
liver
abdominal membrane later it spread to my
right lung as well um
so next why should you care
well the very short answer is that
either you're going to get cancer or
someone close to you will
now
that's the reality in 2022
i'm
you know working on changing that
reality for you and
other people in the world um more of
that later
but yeah
that's the reality basically is that
you're gonna get cancer or someone you
know
um has or will get cancer
and
obviously we need to change that
so
[Music]
what we need is effective cancer
treatments that don't destroy your body
and that are affordable for everyone
everywhere
so that's what i'm working on um
you can find out some of the stuff i'm
doing
from um
my website make cancer history dot jp
um that's jp for japan so make cancer
history dot jp if you want to find out
more about my personal story and
how i am alive
um
six years after
um a terminal diagnosis with
seven to nine months to live
um if you go to hack cancer.jp
so that's hack cancer.jp
that forwards to
like redirects to uh my gofundme page
and you can see the updates there i've
done
i don't know almost 100
videos about um
well over the past six years i've been
doing videos about the treatments i've
been having and the
results and that kind of thing so if you
go to hackcancer.jp
you can find out all about um
yeah my story if you go to make cancer
history dot jp
you'll see the work i'm doing here in
tokyo
to try and
make cancer history
so
next question is like why is cancer so
common
um
lots of high profile cancer cases you
you certainly know people with cancer
um you have to be a bit careful because
of course now
i see now but recently we have a lot of
social media so we hear about things
maybe um that we wouldn't have heard
about in the past
it does seem cancer's becoming more
common in young people
that could be due to environmental
factors
um
it could be lifestyle
issues
there are some odd things like the
number of non-smokers who get lung
cancer is going up so maybe that's um
due to pollution
maybe air pollution obviously um but it
could be other forms of pollution as
well because some pollutants are
co-carcinogens so they work with other
things to cause
cancer so they could be pollution in
water
that's combining with other things in
your body called causing lung cancer for
example
and of course i mean people are living a
lot longer
now which is a fantastic thing
um
but yeah in most countries there's
rising life expectancy
a lot of
diseases that used to kill people are
now um
yeah becoming controlled either as
chronic diseases or in a few cases even
cured
so maybe that's a reason why cancer
seems to be more common
um
we also have a lot more detection and
early detection
and screening you know that kind of
thing so i think um
people are
being picked up with screening is
finding the cancer or people are going
into the healthcare system with another
disease and the cancer is discovered in
my case my cancer was discovered just
because of some side effects
um to an antibiotic
so i
had a chest infection got a very
standard course of antibiotics broad
spectrum antibiotics got a bad reaction
doctor was a bit suspicious
she pushed me for some testing and um lo
and behold terminal cancer
not what i was expecting from a
cough and some medicine
so finally why is cancer so hard to
treat and why does it seem almost
impossible to cure
well
it seem it is hard to treat because it's
a group of diseases so
drugs for one type of cancer don't
necessarily
help with another type of cancer
um
[Music]
as cancer kind of grows and
even spreads in the body
it's almost becoming a different disease
so like metastatic cancer is a cancer
that's spread out of the body out of
where it started
um so that's like a generally stage
three or stage four cancer
is fundamentally different
as a disease to cancer that's
in one place
another reason i mean think about my
case is that there's often no symptoms
until the cancer spread so in my case
when i had these antibiotics
that caused some side effects because
there was a big tumor in my intestine um
and which caused a lot of pain when i i
took those antibiotics
so yeah some some cancer is almost only
found in late stage uh ovarian cancer
tends to be
no symptoms until it's um it's spread
which is um yeah very upsetting
um other cancers are in kind of places
where they can spread easily so breast
cancer tends to spread quite early i
think because
um
it can spread through the lymphatic
system
so it has access to all those lymph
nodes in the chest
gets into the muscle wall spreads
through the body gets into the bones
um
yeah so that's
one reason
um
another
perhaps obvious reason
is that the treatments are so brutal um
cancer treatment is is horrific
um
it's it's hard to describe just how
unpleasant it is radiation treatment
that
burns your skin
makes you go gray
it causes hair to fall out
maybe causes
other tumors in your body
chemotherapy
that attacks anywhere in your body where
um
cells are being replaced like lining of
the stomach
the intestine all that kind of you know
all those parts of your body
hair follicles
um
yeah they're really really really nasty
drugs the treatments are really nasty
cancer surgery so
surgeons do something called
cytoreductive surgery where they
basically cut out or burn out any
visible cancer
um
that they they they can safely remove
now
in my case the cancer would spread a lot
so
yeah six hours of surgery with the
surgeon hunting around
to see what he could um safely cut out
and then of course with
cancers like colon cancer
you
tend to have bits of your intestine
removed uh maybe your intestines can be
reconnected afterwards
very often they can't so you have a
colostomy bag where the
intestine comes out of the wall of your
stomach and
of the abdominal wall sorry and uh
attaches to a plastic bag to collect
waste that you have to empty many times
a day um i had that for
five years had a reversal surgery done a
year ago but i still have you know short
intestine big big bit of my intestine
removed that causes trouble every single
day of my life
from from now onwards
with breast cancer removing
um
either part of um part of the breast
maybe a lumpectomy
or
you know a whole um mastectomy again
with lung cancer
if it's a an isolated
tumor a surgeon can do a wedgery section
take out a little bit of lung
um
could have to remove a whole load of the
lung or entire lung
so um
patients gen
generally have to
stop
treatment because
well either they die um or because
the treatment is just so brutal the side
effects and the damage to the body is
just is just too tough
so
how about
actually
getting to a cure and sorting out
um some of this mess that is cancer
treatment
it's obviously well not obviously but
it's important to say that
some people are cured of cancer like
cancer is a curable disease
and it seems that most types of cancer
are curable and there are people who
have been cured
possibly in two years time i'll be
giving a talk at hope again and i'll be
saying
semi-confidently that i'm a terminal
patient who was cured
but the percentage of patients cured is
very very low and especially the
percentage of late stage patients cured
as almost zero
now i have to
state again i'm not a doctor
i'm not pretending to be one i'm a
patient who has gone through a lot of
treatment
i've studied cancer a lot i've talked to
lots of doctors i've talked to cancer
researchers
talk to hundreds of patients
and i
and quite a few japanese
cancer specialists have
observed something in japan over the
past few years
in my case over the past six years
um which is the time i have been very
unwillingly
involved in cancer
it basically observed
that there are four things that help
cancer patients
live
longer
and potentially even get cured
so the first thing is the condition of
the patient's immune system
right so
that's
really a key thing because
it's the immune system that cures the
cancer
i believe at this time
meaning that
when you have camp let's say you have
cancer surgery
and the cancer hasn't spread
a surgeon removes the tumor
and then
you have this microscopic disease left
behind
you may have cancer cells floating
around the body called circulating tumor
cells
and the immune system
hopefully can deal with those and the
cancer doesn't recur
the problem with this is that when you
have surgery there's a lot of immune
suppression
so it suppresses the immune system a lot
if you have radiotherapy suppresses the
immune system a lot
if you have chemotherapy it suppresses
the immune system a lot
now
if you have radiotherapy or chemotherapy
that kills from the cancer cells
the immune system can see this hopefully
and starts attacking cancer cells
so you can see there's kind of this um
like uh balance like seesaw kind of
balance between
the cancer treatment
killing cancer cells which
is obviously good and particularly
destroying tumors that
were damaging the patient
um but also causing immune suppression
so the condition of the immune system is
really important
and then access to the newest treatments
it just seems to be a recurring theme
when you look at
long-term cancer survivors they got the
newest treatments clinical trials
or just
just the latest treatments available or
using old treatments but in newer ways
right that's that william gibson quote
the future's already here it's just not
evenly distributed
the next thing that seems to be a key
factor is the total amount of treatment
so can the patient
deal with more and more treatment
especially
chemotherapy or this molecular targeted
therapy
can they have a lot of immunotherapy
so you can see already how these factors
are related because
um
more treatment if their treatments to
damage the immune system then
that's gonna
like tip the balance in the wrong
direction
and the fourth thing is the variety of
treatments so
[Music]
long-term survivors tend to have a wide
variety of treatments so there are eight
ways of treating cancer at the moment
i've had seven of them
um
and within those ways of treating cancer
so chemotherapy being one i've had
a whole cocktail of different
chemotherapies
and molecular
therapies
um i've had two types of radiation
therapy
um
so a lot of varieties of treatment
seems to be a key factor and that's
probably because
it
stops the cancer being able to evolve
like one of the reasons why
cancer survives
and patients don't is that the cancer
revolves very quickly
very simple darwinian evolution right
you have
a cancer treatment it kills
90 of the cancer cells in your body the
remaining 10 percent happen to be
resistant to that treatment and that
forms a new population of cancer cells
um
yeah so having a big variety of
treatments seems really important
so
those kind of four
factors i guess you could call them
they suggest to us what a cure
should look like right combination of
treatments
treatments that have
less impact on the patient particularly
on the immune system
um and treatments like
with a view to having more treatment in
the future kind of admitting that
the patient's going to
survive they're probably going to need a
whole series of treatments
so we should
carefully choose the treatments that are
going to keep the patient in a good
condition
so finally i mean how would you
scale this kind of thing and make it
into a proper
cure
um well
you know
some countries have almost no cancer
treatment
right so many countries in africa for
example there'll be no radiotherapy or
there'll be one radiotherapy machine for
a country of
20 million or whatever
a place like malawi
there's almost no cancer treatment there
some countries have really great cancer
treatment but it's very
uneven
in terms of access so the us would be a
good example there are some
fantastic
cancer treatments in the u.s
but not accessible for the
majority of americans
um cancer patients i know in the us who
are terminal
say that generally in the u.s you need
about a million dollars
as a terminal patient to kind of um like
live
as long as possible with your cancer
right so if you
wanted to
do the best
get the best treatments whatever um
it's going to cost you about a million
dollars um
yeah so it's very uneven treatment
in other countries the treatment is
uneven depending on cancer type and age
of patients so in the uk for example
really good surgical technique
um quite poor
in other areas of healthcare
related to cancer
so overall
um
quite poor cancer care um
i don't like saying that i'm
british
um but yeah i would not be
alive six years later if i had stayed in
the uk for treatment absolutely not
if i was an amazing case
maybe would have lasted um
a year year and a half
if i was one of those amazing outliers
in the uk
certainly wouldn't have been here six
years because
most of the treatments i've had are not
available in the uk
some that are just the the quality uh in
the uk is poor
um compared to what i've had in japan
so one thing that we really need to do
is is use refactoring
so we need to look at treatments that
we've already got
that treatments that
are
effective or
more effective than not um happy would
be be a more honest way of putting that
but refactor them so
without changing the treatment outcome
find a way to make the treatment more
accessible particularly
cheaper um so and that goes for other
medical technology so things like the ct
scanners and the pet scanners
mri scanners they are massive machines
they're very expensive
they're not
improving over the years they're still
massive and expensive
have very high power consumption
they're so heavy they
often the basements of hospitals so we
need to
refactor those re-engineer those
treatment machines radiotherapy machines
make
cheaper versions
um
you know looking at open source
solutions
um we need to
look at
cancer drugs where the patents have
expired
and then you can make a biosimilar drug
which is a slight alteration
but the drug functions in the same way
and that could be done by non-profit
organizations
um
and again we could we could sort of have
open open source
drugs um especially one thing we need to
do is share knowledge
among
cancer patients and doctors and
researchers so that's one of the big
areas i'm working on
so
yeah i educate cancer patients around
the world i run free online seminars
about treatments
i
have um
yeah provide information for doctors as
well and
yeah i'm working on getting doctors
patients and researchers together to
share the knowledge
obviously in the tech community we know
a lot about community and knowledge
sharing
but in the medical community um
well not even call it a community but
there's a lot less
skill
when it comes to sharing knowledge right
researchers are publishing
medical papers instead of
making wikis where people can
annotate and add comments and edit
things for example
um you know we need to get medical
professionals coming to hacker
conferences instead of just talking to
each other at medical conferences
um
so as i said before like if you go to um
make cancer history.jp
you can see some of the work i'm doing
you can get in touch with me
and if you go to hackcancer.jp
you can find out more about
my personal situation you can
watch educational videos on living and
dying with cancer
i'm always very open to questions and
contacts so
find me online get in touch with me ask
me questions
if you want to help
get in touch if you need help obviously
get in touch as well
because yeah i'm working hard to make a
real
difference to
how cancer patients get treated
so thank you ever so much for your
attention i deeply appreciate it and
please do get in touch um
either via
hackcancer.jp
or make cancerhistory.jp
or just look me up online caramoon
you'll find me on twitter and
all those other ridiculous social media
things
thanks a lot
and we are
and we're live with cara moon right now
if anyone has any questions for our
speaker please feel free to come to the
microphone over here so that we can make
sure all of our friends around the world
as well as our speaker can hear your
question we also have some questions in
from the matrix chat
there's a couple questions again if you
don't want to answer these questions
because they do these two are a little
bit uh on the sensitive side
feel free to not answer them
the first one um from
from zapp was wondering how old you are
okay um so i am now 42
so when i was diagnosed i was
36
um yeah so 36 is kind of quite young to
be told you've got maybe seven to nine
months to live and uh yeah i'm surprised
and very happy to be
still alive now
six years later and we're very happy
that you're still alive as well and
congratulations on getting through so
far thank you
can you share um this question is from
the one wolf
could you share the order of magnitude
how much the cancer treatment has cost
over the years
um
okay so first of all i should say that
i'm
in japan where we have public health
insurance
so
a lot of my treatment is covered by
public health insurance
uh in japan we contribute 30
to the cost
but that's capped as well like there's a
monthly maximum
um i was a freelance worker so my income
dropped basically to zero when i got
diagnosed and needed treatment
so
um
yeah my monthly medical bill for
standard treatment was maybe a couple of
hundred dollars a month
because it's limited by the japanese
government
all the
kind of high-tech stuff like
proton beam therapy and immunotherapy
that's not covered by public health
insurance in japan those are kind of
cutting-edge treatments
so i did crowdfunding for that
um
so i think it's probably somewhere
around a hundred thousand dollars
um
maybe my life is worth that i don't know
but uh it's a scary big number um but
yeah something like that around a
hundred thousand dollars
i i think you kind of answered what i
was about to ask but i was about to ask
to what degree was your treatment of
cancer in japan standard for japan and
to what degree it was because you
received some experimental treatment or
you simply fought to
get the best treatment possible yeah so
my my treatment was very much a mixture
of like standard treatment
and
yeah you could say experimental
treatments
especially combinations of treatments
i was quite fortunate that my
oncologists understood that the
like the standard treatment protocol for
stage four patients
um doesn't have a happy ending right
it's not um treatment of curative intent
it's like palliative treatment kind of
they're trying to keep you alive a bit
and minimize your symptoms
so
i think yeah that my oncologists were
quite open-minded
about that
and i found a fantastic immunotherapist
who is considered the father of
immunotherapy in japan
so it'd be
similar to dr rosenberg in the u.s who
invented immunotherapy
so yeah i had a mixture and i think
having a mixture of treatments is really
really important
um i don't mean a mixture of treatments
that work and don't work i mean a
mixture of
science-based reality-based treatments
um maybe some that don't make a great
deal of difference but that help other
treatments work
or just prevent the the cancer from
becoming resistant to treatment which
generally cancer does i mean it's
very very basic evolution if you
try and kill a population of cells and
some survive
they're going to go on and make um make
more cells so that's what you're dealing
with with late stage cancer
user
ml9991 2494 asks can you share about the
non-medical side of things and how that
has helped you with your cancer recovery
such as a support network mental health
caregivers etc
sure um
so the hacker community have been
massively supportive
that's helped a lot with mental health
but also the
what's called the financial toxicity so
cancer is a very expensive disease to
deal with not just the cost of medical
treatment
but things like
transport to various hospitals if you're
looking for the best possible treatment
might be quite far away i spent um two
months going every week like by bullet
train to a hospital in north of japan
for proton beam therapy
um so that's a like two hour by a bullet
train from tokyo
um so those kind of costs are massive so
the
support of the haka community
um
has been really big like um robert
firefly uh
arranged an interview for me on off the
hook
emmanuel has been really supportive
mitch altman has helped her fund raising
a bicycle mark
who does a citizen reporter podcast he's
done a lot of interviews with me
which has shared my story
and mentally has yet made a big
difference just having
that outlet to kind of talk about what
was going on
or what is still going on
um
i also uh started a youtube channel not
particularly a fan of google but um
yeah doing those videos helped a lot
with mental health
um
trying to stay in the best possible
physical shape
so that you can tolerate more treatment
that's really hard to do when you're on
heavy chemotherapy the side effects are
brutal
but um yeah trying to to stay fit has um
yeah made a big difference i think
any more questions
uh you talked about working with the
immune system
thoughts on countering cancer's native
immuno evasions
so
you know we've got
a couple of things to deal with so we've
got well
we've got like the the cancer kind of
suppresses the activity of the immune
system so one way is it may be
forcing down the number of white blood
cells
cancer can kind of suck in white blood
cells into the tumors as well
then also cancer cells are able to hide
from the immune system by not presenting
antigens
um
and
also
the kind of the consequences of the
tumor micro environment mean that it's
difficult for the immune system to
attack
the tumors so that's you know
one approach is to have a variety of
treatments so for example i had nk
cell-based immunotherapy
nk cells can attack
bacteria they can detect viruses they
can attack
cancer cells presenting antigens so it's
like labeled as bad cells but also
cancer cells that are not
presenting antigens we hear a lot in the
media about t cell immunotherapy but t
cells can only attack cells that are
presenting antigens
i took a
diabetes drug called metaformin i don't
have diabetes but it seems a side effect
of the drug is it inhibits anaerobic
respiration
that means
it stops or
it reduces the
cancer tumors
anaerobic respiration
the anaerobic respiration protects the
tumor because uh lactic acid forms in
the tumor micro environment
and that
destroys the
immune cells um the white blood cells
that are going in
to attack it
we also did hyperthermia therapy so
that means heating up the tumors so they
get
um heat shock proteins forming on the
surface of the cells your immune system
can recognize that so there's a bunch of
approaches
to try and
make the cancer more visible
to the immune system i also had a
dentritic cell therapy
dendritic cells
are the ones that look a bit like
octopuses and they get bits of dead and
dying
bad cells
and they take them to your lymph nodes
and they present them to the t cells and
nk cells so i had the dendritic
therapy
um
and then the other big thing was um the
autologous therapies of using my white
blood cells
so removing some of those growing them
in the lab until they were maybe a
billion times more and then
having those like returned to me as a
drip so doing that to massively increase
the number of white blood cells
in my body so yeah those are
some of the approaches
um but yeah
it's it's the immune system that has the
ability to cure cancer ultimately i
think so we have to also choose
therapies that are not going to trash
the immune system
radiation
destroys white blood cells
chemo destroys white blood cells so
using those treatments very carefully
um cancer surgery causes massive
immuno
suppression
so just being very careful about
choosing therapies and timing them
so that the patient isn't um yeah going
to be completely trashed
great question
uh hello uh first of all thanks for uh
coming to take the time out to speak to
us uh i had a question so when you
started your journey about like
you know when they told you your
condition up and you know you went along
and started learning and experiencing
more of these treatments and started
learning about particularly the
uh the trade-offs in the quality of life
like hey i have to take this medication
it does x y and z for me but it also
makes me feel like this and this
uh in your times of deepest struggle
when
you know you're like oh wow these
trade-offs are this is like really big
this is my life like in your greatest
times of struggle how have you gotten
through
uh and and you know carry it on and be
like well no i'm gonna keep i'm gonna
keep trying i'm gonna keep you know
living my life
yeah so that is yeah by far the hardest
thing and it's
it's very difficult just based on time
right so
when you have terminal cancer you're
extremely busy
because a you're trying to live your
life as much as possible in my case
particularly trying to spend as much
time with my my kids and teaching them
to pick locks and pack and all those
important life skills but i'm also yeah
rushing around looking for hospitals
finding doctors that will
speak to me about
the the cutting edge treatments the
experimental treatments
um
[Music]
so i think yeah one thing was that when
i got annoyed and angry which happened
quite a lot trying to um redirect that
into taking action
so
the the
like there's this um this saying that
motion beats meditation
um and i i believe that very strongly
that taking action is the key thing
um in my case it was often making a
crummy youtube video where i tried to
talk through the um hell that i was in
um
so yeah kind of
when when i was in my my darkest moments
it was really thinking like what can i
actually do
is there a question i can ask someone
that might
makes it you know result in some useful
information um is there a way i can do
some crowdfunding
to pay for some treatment so instead of
kind of
dwelling on things which is like
something i would do by
by my nature
um
trying really hard to turn that into
action
um another really big thing
is is like being reflective and
realizing that
there's a whole load of bad stuff
happening
but the
[Music]
the worst thing is like the result of
all that
so what i mean by that for example is
when we don't have much sleep
um everything is screwed up
right so often i was um
yeah really at the point of giving up
and i had to kind of remind myself that
at least part of that was sleep
deprivation because
i'd spend nights vomiting on the chemo
or you know after the surgery i was in
pain a lot and
i had a chemo drug
that the um i was given like a steroid
to stop the fatigue and the
side effect of the steroid was
uncontrollable sneezing so you might
sneeze for like an hour
um
you know a few days after surgery so
you've got you feel like the stitches
are ripping open
um i can smile about it now but it was
yeah [ __ ] unpleasant
um but kind of being reflective and
realizing that yeah there's the sleep
deprivation there's problems with not
being able to eat
so often um
again with those steroids right you're
given steroids to stop the fatigue
they make you feel hungry
the chemo makes all the food taste
disgusting right it attacks the inside
of your mouth it attacks the nerves and
your tongue um had this
side effect of first bite syndrome where
bite food and it would send like
lightning shocks into your brain
um
say a pretty pretty grim stuff but
always like looking wet where i could
take action whereas like meaningful
action which maybe yeah emailing a
doctor or researcher saying like this is
my situation what can you recommend or
that kind of thing
um do we have time for another question
is this next yeah
are the body scans blood tests dna tests
effective for
let's call it like elective or
non-medically required
to pick up on potential issues
um
[Music]
so there's a lot there
the dna tests
at the moment are pretty unreliable
but maybe like so if it's over in terms
of screening
right so
those kind of tests like um
full genome testing
um circulating tumor cells these kind of
tests we call liquid biopsies
um they are
not particularly reliable because
um
like the companies make
claims about accuracy we know it's not
true because if you send the same
samples to different companies you get
different results so someone's not
telling the whole truth
where they are useful is like as a first
step of staging so you might
take a liquid biopsy and something is
elevated or it suggests there's
some tumor
circulating tumor cells and then
a next stage after that would be
a traditional like biomarkers and maybe
a ct scan or pet scan
um
if you are older
then these things make far more sense
like so if you're young i mean your
chances of getting cancer when you're
young are low possibly increasing
recently but still low most cancers you
know in in the over 60s
um
so those those kind of early screening
tests are
much more helpful for older people
because
there's if you get a positive result
there's more chance that really is
cancer
um
the scans
uh like ct scans pet scans uh they
obviously expose you to some radiation
um
again if you're older that's less of an
issue
if you're
younger and
tending to be involved in having
children or whatever in the future then
yeah that's of a concern so those um
those screening tests
are
useful as part of a process they're not
um
reason to panic
in themselves right if you do one of
these um
uh rapid genome sequencing and it says
like you've got all these mutations
you're probably gonna get cancer um
that's not something to to be uh
particularly concerned about um
yeah because they're just not that
accurate at the moment they may
hopefully change it at some point in the
future
once again i want to say thank you
for
sharing this with us
this has been
one of the more uh
amazing medical talks that we've had at
this event
and thank you for coming and joining us
you