Glioblastoma Multiforme (GBM) is the deadliest form of brain cancer. Average life expectancy, 14 months. This eBook provides a patient's perspective on the Top 10 things you should do when diagnosed with GBM.

1. The
Top
10
Things
You
Should
Do
A
pa)ent’s
perspec)ve
on
being
newly
diagnosed
with
glioblastma
©
2010
A
Pa)ent’s
Perspec)ve
1

2. About
this
perspec)ve
In
November
2008,
my
liBle
brother
Johnny
B
had
a
seizure
at
work
and
was
rushed
to
the
hospital,
unconscious.
The
culprit
was
a
tumor
in
his
brain.
Second
and
third
opinions
with
trusted
neurosurgeons
resulted
in
the
same
recommenda)on:
surgery,
immediately.
The
results
of
the
tumor
biopsy
declared
a
death
sentence:
glioblastoma,
grade
IV.
There
is
no
grade
V.
Average
life
expectancy,
14
months.
Well,
it’s
been
over
15
months,
and
Johnny
B
is
going
strong.
He’s
bea)ng
the
odds,
bea)ng
the
unbeatable
glioblastma.
The
journey
con)nues,
but
we
wanted
to
pause
and
take
a
moment
to
share
with
you
some
)ps
we’ve
learned
along
this
wild
ride.
The
informa)on
expressed
in
this
ebook
is
based
the
experience
of
Johnny
B
–
a
pa)ent,
warrior,
survivor
–
and
his
team
of
care
givers.
Johnny
B
is
the
cu.e
pie
in
the
lower
right.
That’s
me
in
the
upper
le9,
the
big
sister.
This
The
informa)on
should
not
be
used
for
diagnosis
or
photo
was
taken
in
the
1960s,
but
it
captures
treatment,
or
as
a
subs)tute
for
professional
medical
Johnny’s
personality
to
a
tee.
He
hasn’t
changed
much
in
40
plus
years;
s.ll
quick
with
care.
We
urge
you
to
consult
with
your
health
care
a
smile.
The
only
difference
is
now
the
smile
is
provider
prior
to
aBemp)ng
any
treatment
on
yourself
typically
accompanied
with
a
smart
remark.
or
another
individual.
©
2010
A
Pa)ent’s
Perspec)ve
2

3. Contents
Tip
1:
Mobilize
Tip
6:
Boost
Your
Immune
System
Tip
2:
Get
Your
Tumor
Tissue
Tested
Tip
7:
Stay
Hydrated,
Keep
Moving
Tip
3:
Don’t
Visit
the
Doctor
Alone
Tip
8:
Understand
Insurance
Coverage
Tip
4:
Get
Organized
Tip
9:
Use
an
Online
Journal
Tip
5:
Get
Educated
Tip
10:
Visual
Spontaneous
Remission
©
2010
A
Pa)ent’s
Perspec)ve
3

4. Tip
1:
Mobilize
©
2010
A
Pa)ent’s
Perspec)ve
4

5. Tip
1:
Mobilize
If
you,
or
someone
you
love,
have
been
diagnosed
with
GBM,
then
you
know
the
prognosis
is
grim.
It
sucks.
It’s
scary.
And
you’re
freaking
Johnny
B
and
his
wife
Ka)e
assigned
If
you
don’t
have
a
close-­‐knit
group
to
out.
But
you
need
to
push
through
the
tasks
to
the
en)re
family.
Ka)e’s
sister
rely
on,
then
connect
with
folks
online
ini)al
shock
and
mobilize.
Time
is
of
Molly
and
I
were
appointed
chief
or
in
a
local
support
group.
the
essence.
researchers.
We
were
on
the
frontlines
gathering
informa)on,
dis)lling
it,
and
You
don’t
need
to
face
this
alone.
Don’t
be
shy.
Ask
for
help.
Assign
tasks
presen)ng
it.
to
friends
and
family;
everything
from
helping
around
the
house
to
The
community
rallied
around
the
researching
insurance
coverage
and
family,
helping
with
meals,
housework,
new
GBM
treatment
op)ons.
the
kids,
you
name
it.
©
2010
A
Pa)ent’s
Perspec)ve
5

6. Tip
2:
Get
Your
Tumor
Tissue
Tested
©
2010
A
Pa)ent’s
Perspec)ve
6

7. Tip
2:
Get
Your
Tumor
Tissue
Tested
It’s
important
to
have
your
tumor
tested
for
gene)c
markers
that
may
impact
treatment.
If
you’ve
been
diagnosed
with
a
brain
Prior
to
surgery,
discuss
with
your
Once
the
tumor
has
been
tested
and
tumor,
and
have
not
yet
undergone
doctor
that
you’d
like
to
save
the
effec)vely
“mapped,”
work
with
your
surgery,
start
shopping
immediately
for
removed
)ssue
for
further
analysis.
doctor
to
determine
the
best
a
doctor.
treatment
plan
for
your
form
of
If
your
doctor
has
an
onsite
lab
for
brain
cancer.
Find
a
doctor
who
is
open
to
crea)ve
tumor
mapping,
make
sure
your
approaches
to
treatment.
Remember
treatment
plan
includes
this
panel
of
that
you
and
your
cancer
are
unique
gene)c
tes)ng.
and
your
treatment
plan
should
be
highly
personalized.
If
not,
find
a
brain
cancer
center
that
will
take
your
)ssue
and
test
it
for
you.
For
example,
the
Ben
and
Catherine
Ivy
Center
for
Advanced
Brain
Tumor
Treatment
at
Swedish
Medical
Center’s
Neuroscience
Ins)tute,
the
lab
technicians
will
work
directly
with
your
doctor
to
transport
and
test
your
)ssue
sample.
©
2010
A
Pa)ent’s
Perspec)ve
7

8. Tip
2:
Get
Your
Tumor
Tissue
Tested
Con)nued
Make
sure
to
have
your
tumor
tested
MGMT
PDGFR
for
the
following
gene)c
markers:
MGMT,
EGFRvIII,
and
PDGFR.
An
enzyme
produced
by
the
“MGMT”
Overexpressed
platelet-­‐derived
growth
allows
the
damaged
tumor
cells
to
factor
(PDGFR),
is
the
target
of
gleevec.
I
know
what
you’re
thinking.
More
repair
themselves.
The
level
of
If
there
is
high
MGMT
ac)vity,
which
acronyms.
Just
what
you
need.
expression
of
the
gene
that
controls
predicts
that
temodar
will
be
Vanna,
I’d
like
to
buy
a
vowel.
the
MGMT
enzyme
predicts
whether
ineffec)ve,
gleevec
is
a
reasonable
the
standard
treatment
protocol
alterna)ve,
in
combina)on
with
one
or
Here’s
a
quick
shorthand
descrip)on
of
involving
temodar
will
be
successful.
another
chemotherapy
agent.
But
why
it’s
important
to
test
for
these
this
protocol
is
much
more
effec)ve
if
gene)c
markers.
EGFRvIII
the
PDGF
overexpression
is
present.
Epidermal
growth
factor
variant
III
muta)on.
The
vaccine
under
development
that
targets
that
specific
muta)on
seems
promising.
However,
only
40
percent
of
GBM
tumors
test
posi)ve
for
this
variant.
©
2010
A
Pa)ent’s
Perspec)ve
8

9. Tip
3:
Don’t
Visit
the
Doctor
Alone
©
2010
A
Pa)ent’s
Perspec)ve
9

10. Tip
3:
Don’t
Visit
the
Doctor
Alone
Your
first
doctor’s
visit,
post
surgery,
is
difficult.
This
is
when
the
results
of
the
tumor
biopsy
are
presented.
And
you’ve
been
handed
an
Bring
levelheaded
people
that
can
take
Don’t
be
in)mated
to
ask
for
invariable
death
sentence:
copious
notes
and,
if
needed,
ask
clarifica)on.
If
you
don’t
understand
glioblastoma
mul)forme
(GBM).
tough
ques)ons
on
your
behalf.
the
medical
jargon,
ask
your
doctor
to
use
language
that
a
mere
mortal
can
Breathe.
Make
a
prac)ce
of
wri)ng
down
comprehend.
ques)ons
before
your
visit.
Then
refer
Hopefully,
you
were
not
alone
for
this
to
these
ques)ons
during
your
visit
first
appointment.
Moving
forward,
it’s
and
write
down
your
doctor’s
best
to
bring
one
or
two
folks
to
help
responses.
you
process
informa)on.
©
2010
A
Pa)ent’s
Perspec)ve
10

11. Tip
4:
Get
Organized
©
2010
A
Pa)ent’s
Perspec)ve
11

12. Tip
4:
Get
Organized
Create
and
keep
a
medical
binder
with
every
scrap
of
informa)on
you’ve
gathered
about
GBM.
When
you
are
diagnosed
with
GBM,
Consider
crea)ng
a
tab
where
you
If
you
are
not
as
organized
as
Ka)e,
the
amount
of
informa)on
you
need
to
keep
an
ongoing
list
of
ques)ons
to
ask
and
need
a
star)ng
point,
contact
the
process
can
be
overwhelming.
during
doctor
visits.
And
perhaps
Ben
and
Catherine
Ivy
Center
for
another
tab
to
store
interes)ng
Advanced
Brain
Tumor
Treatment.
It’s
important
to
get
organized.
And
a
ar)cles.
These
wonderful
folks
have
created
a
binder
is
a
good
approach.
Create
a
tab
handy
notebook
that
can
help
you
where
you
keep
a
complete
list
of
your
Johnny
B’s
wife
Ka)e
is
hyper
organize
informa)on.
medicines
as
you’ll
be
asked
for
this
organized.
Right
out
of
the
gate
she
informa)on
over
and
over
and
over.
had
the
presence
of
mind
to
create
a
medical
binder
with
doctor
phone
Create
another
tab
where
you
keep
a
numbers,
a
list
of
Johnny’s
medicines,
complete
record
of
your
doctor
visits,
and
interes)ng
ar)cles
about
GRM
with
outcome
summaries.
treatment
op)ons.
©
2010
A
Pa)ent’s
Perspec)ve
12

13. Tip
5:
Get
Educated
©
2010
A
Pa)ent’s
Perspec)ve
13

14. Tip
5:
Get
Educated
You’ve
got
to
be
thick
skinned
to
get
educated
about
GBM.
The
survival
sta)s)cs
are
devasta)ng,
and
these
stats
are
unavoidable.
However,
gemng
educated
will
allow
Understand
the
standard
Evaluate
promising
vaccines
you
to
speak
the
same
language
as
treatment
your
doctor
and
enable
you
to
take
an
The
best
treatment
protocols
aner
ac)ve
role
in
your
treatment.
Here
are
The
“gold
standard”
of
treatment
ini)al
diagnosis
are
now
three
some
recommenda)ons.
includes
surgery,
followed
by
the
vaccines:
combina)on
of
radia)on
with
a
new
chemotherapy
agent,
temozolomide
1. DC-­‐VAX
vaccine
developed
at
UCLA
(trade
name
temodar
in
the
USA
and
and
Cedars
Sinai.
temodal
elsewhere
in
the
world).
2. The
vaccine
for
the
EGFR
variant
III
While
this
new
standard
appears
to
developed
at
M.
D.
Anderson
and
produce
a
notable
improvement
in
Duke.
outcome
from
previous
treatments,
it
s)ll
falls
far
short
of
being
effec)ve
for
3. The
vaccine
for
the
the
great
majority
of
pa)ents.
cytomegalovirus
virus,
also
developed
at
Duke.
©
2010
A
Pa)ent’s
Perspec)ve
14

15. Tip
5:
Get
Educated
Con)nued
Inves)gate
clinical
trials
Your
immediate
goal
is
simply
to
While
you
do
not
need
a
gather
informa)on.
You
don’t
need
to
recommenda)on
from
a
physician
or
You
can
find
a
list
of
current
clinical
make
enrollment
decisions,
especially
oncologist
to
par)cipate
in
a
clinical
trials
at
ClinicalTrials.gov.
if
you
are
newly
diagnosed.
You’ll
find
trial,
you
may
need
their
help
to
that
most
of
the
trials
are
for
pa)ents
decipher
eligibility
requirements
and
There
are
pros
and
cons
to
with
recurrent
or
progressive
comprehend
side
effects.
Gather
your
par)cipa)ng
in
clinical
trials.
However,
glioblastoma.
informa)on,
and
then
ask
your
doctor
it’s
beBer
to
be
armed
with
trial
for
guidance.
informa)on
than
to
be
caught
flarooted.
©
2010
A
Pa)ent’s
Perspec)ve
15

16. Tip
6:
Boost
Your
Immune
System
©
2010
A
Pa)ent’s
Perspec)ve
16

17. Tip
6:
Boost
Your
Immune
System
Do
whatever
you
can
to
boost
your
immune
system—immediately.
We
built
a
supplement
cocktail
for
Why
a
cocktail
approach?
2. Cancer
treatments
of
all
sorts
are
Johnny,
comprised
of
mul)ple
agents
probabilis.c
in
their
effects;
none
that
have
been
clinically
tested
for
1. The
approach
has
evolved
based
on
of
them
work
for
everyone.
efficacy
in
trea)ng
glioblastoma.
the
efficacy
of
the
treatment
of
AIDS.
Any
given
cancer
diagnosis
is
an
Our
approach
was
based
on
the
amalgam
of
different
gene)c
defects
research
of
14-­‐year
GBM
survivor,
Both
viruses
and
cancer
cells
have
that
respond
in
different
ways
to
any
Dr.
Ben
Williams.
His
book
is
chock
full
unstable
gene)c
structures
very
given
treatment
agent.
of
useful
informa)on
and
the
cocktail
suscep)ble
to
muta)ons.
approach
has
been
helpful
for
Johnny.
This
is
especially
true
for
This
implies
that
unless
a
treatment
is
glioblastomas,
which
have
a
Here
is
an
excerpt
from
Dr.
Williams’s
immediately
effec)ve
the
dynamics
of
mul)plicity
of
gene)c
aberra)ons
that
book
that
you
may
find
interes)ng.
evolu)on
will
create
new
forms
that
vary
widely.
Any
given
"effec)ve"
are
resistant
to
whatever
the
treatment
agent
will
benefit
only
a
treatment
may
be.
However,
if
several
minority
of
pa)ents.
The
result
is
that
different
treatments
are
used
the
chances
of
finding
an
effec)ve
simultaneously
(instead
of
treatment
increase
the
more
different
sequen)ally,
which
is
typically
the
treatment
agents
that
are
u)lized.
case),
any
given
muta)on
has
a
much
smaller
chance
of
being
successful.
©
2010
A
Pa)ent’s
Perspec)ve
17

18. Tip
6:
Boost
Your
Immune
System
Con)nued
3. Any
successful
treatment
will
need
My
advice:
create
a
cocktail,
but
don’t
It’s
an
unfortunate
Catch-­‐22.
Rather
to
be
systemic
in
nature.
be
surprised
if
your
oncologist
is
not
than
fight
the
reality,
it’s
best
to
suppor)ve.
recognize
that
the
oncologist’s
hands
Cancer
cells
are
typically
evident
in
are
)ed,
and
find
a
friendly
doctor
that
loca)ons
in
the
brain
distant
from
the
Why?
If
an
agent
isn't
FDA
approved
can
help.
main
tumor,
indica)ng
that
metastases
specifically
for
trea)ng
glioblastoma,
within
the
brain
can
occur.
Localized
US-­‐based
oncologists
won't
We
turned
to
Johnny’s
family
physician
treatments
such
as
radiosurgery
may
recommend
it.
Pushing
an
agent
for
help
in
vemng
the
agent
be
beneficial
in
terms
of
buying
)me,
through
FDA
approval
requires
a
lot
of
combina)ons
and
dosage
levels
of
but
they
are
unlikely
to
provide
a
cure.
money.
If
the
pharmaceu)cal
company
his
cocktail.
doesn't
believe
it
will
recover
its
Even
if
the
localized
treatment
investment,
the
approval
won't
be
If
you
are
interested
in
learning
more
eradicates
99.9%
of
the
tumor,
the
pursued.
about
the
cocktail
approach,
I’d
highly
small
amount
of
residual
tumor
will
recommend
reading
Dr.
Williams’s
expand
geometrically
and
soon
will
No
approval,
no
oncologist
book,
“Surviving
Terminal
Cancer:
cause
significant
clinical
problems.
recommenda)on.
Clinical
Trials,
Drug
Cocktails
and
Other
Things
Your
Oncologist
Won’t
Tell
You
About.”
©
2010
A
Pa)ent’s
Perspec)ve
18

19. Tip
7:
Stay
Hydrated,
Keep
Moving
©
2010
A
Pa)ent’s
Perspec)ve
19

20. Tip
7:
Stay
Hydrated,
Keep
Moving
I
asked
Johnny
what
)ps
he
would
have
for
someone
undergoing
chemo
and
radia)on.
His
response,
"Don't
get
cancer.
It
Johnny
became
extremely
dehydrated
The
day
before
you
start
a
round
of
throws
a
wrinkle
into
everything.”
during
his
first
few
months
of
chemo.
chemotherapy
get
plenty
of
sleep,
If
you’ve
ever
been
dehydrated,
you
drink
plenty
of
water,
add
MiraLAX
to
Stay
hydrated
know
how
painful
it
is.
So,
again,
if
you
smoothies
to
help
with
cons)pa)on.
start
to
feel
achy,
get
your
fluid
levels
But
seriously,
his
No.
1
)p
is
to
stay
checked.
And
consider
adding
an
hydrated.
If
you
start
to
feel
achy,
get
electrolyte
replacement
to
your
water,
your
fluid
levels
checked.
If
your
levels
like
Nuun
from
REI.
are
low,
get
an
IV.
Keep
moving
Prominent
side
effects
of
radia)on
and
chemo
include
nausea
and
To
keep
cons)pa)on
at
bay,
keep
cons)pa)on.
It
takes
a
while
to
figure
moving,
everyday.
Walk
around
the
our
how
your
body
will
respond
chemo
neighborhood,
around
the
house,
and
radia)on.
But
be
aware
that
it’s
whatever
you
can
do.
not
uncommon
to
become
dehydrated.
Because
you’re
nauseous,
you’re
less
inclined
to
eat,
let
alone
drink
fluids.
©
2010
A
Pa)ent’s
Perspec)ve
20

21. Tip
8:
Understand
Insurance
Coverage
©
2010
A
Pa)ent’s
Perspec)ve
21

22. Tip
8:
Understand
Insurance
Coverage
Before
you
begin
treatments,
it’s
a
good
idea
to
learn
what
your
insurance
will
cover.
Contact
your
insurance
broker
and
ask
Most
manufacturers
have
a
If
you
are
uncomfortable
approaching
for
a
descrip)on
of
your
drug
benefits.
compassionate
care
program
that
can
the
manufacturer,
ask
someone
else
to
help
you
get
their
medica)ons
at
a
pick
up
the
phone
on
your
behalf.
Many
plans
have
a
cap
on
outpa)ent
much-­‐reduced
rate.
drugs
and
chemotherapy
is
expensive.
If
you
your
drug
benefits
are
limited,
Call
the
drug
manufacturer
directly,
tell
don’t
panic.
them
about
your
diagnosis
and
be
explicit
about
what
you
need.
©
2010
A
Pa)ent’s
Perspec)ve
22

23. Tip
9:
Use
an
Online
Journal
©
2010
A
Pa)ent’s
Perspec)ve
23

24. Tip
9:
Use
an
Online
Journal
Your
well-­‐inten)oned
friends
will
eventually
drive
you
crazy,
asking
you,
and
family
members,
about
your
progress.
Responding
can
be
painful,
not
to
The
level
of
detail
and
frequency
of
In
addi)on
to
the
Caring
Bridge
men)on
)me
consuming.
communica)on
is
up
to
you.
update,
our
immediate
family
receives
Some)mes
it’s
easier
to
have
a
family
more
detailed
emails
aner
every
MRI
We
found
Caring
Bridge
to
be
an
member
or
close
friend
to
post
review.
effec)ve
way
to
keep
people
up
to
updates
about
your
progress.
date.
It’s
simple
to
create
a
personalized
online
journal,
and
it’s
Ka)e
is
the
chief
Caring
Bridge
scribe.
free.
Her
updates
are
always
posi)ve
and
contain
just
he
right
level
of
informa)on
for
broad
consump)on.
©
2010
A
Pa)ent’s
Perspec)ve
24

25. Tip
10:
Visualize
Spontaneous
Remission
©
2010
A
Pa)ent’s
Perspec)ve
25

26. Tip
10:
Visualize
Spontaneous
Remission
You
are
not
a
sta)s)c.
You
are
an
individual.
And
if
you
had
to
get
GBM,
well,
this
is
probably
the
best
)me
in
history
to
get
diagnosed.
New
treatment
op)ons
are
advancing
Here’s
some
pragma)c
advice
from
Controlling
the
liBle
voice
inside
your
rapidly,
and
there
is
hope
for
a
cure.
Johnny
B:
head
and
monitoring
your
internal
Your
job
is
to
stay
healthy,
and
stay
conversa)on
was
cri)cal
for
me.
This
alive,
un)l
that
cure
is
found.
Yes,
I
found
reading
“ The
Power
of
Now”
quote
was
especially
relevant
right
cancer
sucks.
But
recognize
that
the
by
Ekhart
Tolle
was
helpful,
if
you
can
aner
my
diagnosis.
There
are
a
lot
of
words
you
use
to
describe
your
get
through
it.
these
feelings
you
have
deal
with.
His
situa)on
have
tremendous
power.
book
helped
me,
although
like
I
said
Don’t
give
cancer
any
addi)onal
Not
looking
too
far
ahead
or
too
far
it’s
not
for
everyone.
nega)ve
energy.
behind
is
a
powerful
tool
when
you’ve
been
handed
a
death
sentence.
It
"Unease,
anxiety,
tension,
stress,
Visualize
spontaneous
remission.
keeps
you
focused
on
the
Now,
not
worry
—
all
forms
of
fear
—
are
caused
looking
back
second
guessing
why
me
by
too
much
future,
and
not
enough
and
not
looking
too
far
forward
on
the
presence.
Guilt,
regret,
resentment,
things
you’ll
miss
out
on
with
your
grievances,
sadness,
biBerness,
and
all
loved
ones.
forms
of
nonforgiveness
are
caused
by
too
much
past,
and
not
enough
presence.”
©
2010
A
Pa)ent’s
Perspec)ve
26

27. Wishing
you
all
the
best
We
hope
you’ve
found
these
)ps
to
be
helpful.
It’s
the
type
of
informa)on
we
wish
we
had
15
months
ago.
Our
hope
is
that
by
sharing
our
experience,
it
will
encourage
you
to
share
yours,
so
we
can
learn
from
each
other
as
a
community.
The
value
of
community
comes
from
knowing
that
you’re
not
alone
on
this
journey-­‐-­‐there
are
others
who
are
in
your
shoes;
who
share
your
fears,
setbacks,
and
victories,
large
and
small.
We
wish
you
all
the
best
on
your
journey.
Johnny
B
and
me,
September
2009.
©
2010
A
Pa)ent’s
Perspec)ve
27

28. The
Top
10
Things
You
Should
Do
A
pa)ent’s
perspec)ve
on
being
newly
diagnosed
with
glioblastma
©
2010
A
Pa)ent’s
Perspec)ve
28