1
Ho
H
wT
How
oB
wT
To
eA
oB
Be A
"Good Patient"
Patient
Patient/Family
International
Seminar
Myeloma
Washington, DC
August 7, 2009
Foundation
August 7,
Foundation
2
3
What Does It Mean To Be A
"Good" Patient
· D'
Don t't be "t
"too
d"
goo
· Take good care of yourself
· Be good to yourself
· Be good to your family
· Be
d
goo tf
to your felllow patitients
4
What Does It Mean To Be A
"Good" Patient
· D'
Don t't be "t
"too
d"
goo
· Take good care of yourself
· Be good to yourself
· Be good to your family
· Be
d
goo tf
to your felllow patitients
5
"When I'
I'm
good I'm
very good,
but when
I'm bad I'm
better."
Mae West
Don't be "too good"
6
Being "too g
ggood" can get you killed
· Not getting a second opinion because you're
afraid
id of offending the doctor
· Not asking the nurse hanging that IV what's in
there
· Not speaking up about how bad you're feeling
or how much it hurts because you
you don't want
want to
bother the doctor
· Taking "no" for an answer when y
gyou need to
hear "yes" insurance approvals,
appointments, copies of films, reports
Don't be "too
"When I'm good I'm
good"
very good, but when
I'm bad I'm better."
7
Not getting a second opinion because
you're
re
r afraid of offending the doctor
Will
W
he be
insulted if I tell
him I want to
get a second
opinion?
8
Not asking the nurse hanging that IV
what'
what s in
in there
tthere
9
Not speaking up about how bad you're
feeling or
or how much it hurts because you
yyou
don't want to bother the doctor
I hate to be a
complainer...
I've felt worse
than this
10
Taking "no" for an answer when you need to
hear "yes" insurance approvals,
appointments, copies of films, reports
11
What Does It Mean To Be A
"Good" Patient
· D'
Don t't be "t
"too
d"
goo
· Take good care of yourself
· Be good to yourself
· Be good to your family
· Be
d
goo tf
to your felllow patitients
12
Be sensible
· This is not the time to start slogging down
mega-doses of vitamins or green-tea,
become a vegan, or take up hang-gliding
· Stress is not your friend
· Sleep is a good
pg
thing
· Exercise is a good thing, but you need to
be very careful about bone issues and not
overdo
Take good care of yourself
13
Try to keep "too busy to be sick"
· Myeloma symptoms and the side-effects
can be
be awful
awful
· If you're really and truly too sick to "power
through "
, get help and rest up until you
feel better
· But, don'
don t wave
wave the
the white flag
flag too soon
soon If
you act sick, you'll feel sick
· Very often, ifif you
you act healthy, you can
can fool
others, and ultimately, yourself
Take good care of yourself
14
If you keep giving up
too easily...
It becomes too easy to
to
give up.
15
Some call it watching
and waiting...
hl
...oth
...ot ers ca l
hlll it lili i
v
!
ng
16
Henry James' "The Beast
In The Forest" teaches an
important
p
lesson:
...Don't let
let fear of "The
"
Beast" ruin your life!
17
You're being stalked by a vicious
killer b t
u o
yo '
u e
v got "ju
"j ice"
· If you let it sneak up on you, it'
it s going to
be ugly
· The good news-- there are
are are incredible
diagnostic tests available so you can see
trouble coming in time to call 911 and
break out the assault weapons
· The bad news figuring
gg out which tests
you need, getting `em done, understanding
and tracking the results can be daunting
Take good care of yourself
18
Tests answer critical questions?
· Is the disease active?
· Is it getting better or worse
· Am I under attack?
Marrow/Blood?
Kidneys?
Immune System
Bones?
Nerves/spinal cord
· Have I been hit by "friendly fire?"
Marrow/Blood?
DVTs (blood clots)
Glucose (sugar)
Electrolytes (dehydration)
Calcium
Take good care of yourself Tests
Tests
19
Decisions on tests are difficult
· Which tests should you have?
What is most effective for you at a point
in time?
What are the
the potential results
results and do
they mean anything? (would you take
action based on the result?)
How much is "peace of mind" worth?
· How often should you repeat
them?
Take good care of yourself Tests
Tests
20
Tests tell you when the disease is active
Test
How The Test Works
Pros/Cons
SPEP
·Blood test, measures
· Simple
immunoglobulins (IgA
(IgA, IgM
IgM,
· Not all patients with active
IgG), also called antibodies,
disease will have an abnormal
comparing to "normal" mix
result
and total amounts
BMB
·Bone marrow extracted from
· Direct access to tumor cells
(a.k.a.
the pelvis (butt) or sternum
·
bone
Invasive, often painful, can miss
(chest) with a rather
marrow
"patchy" disease
formidable looking needle,
biopsy)
often with anesthesia
Free-
· Blood test, detects fragments · Simple, often detects disease
Lite
of immunoglobulins
activity in patients where SPEP
does not
· Not widely available
Imaging
To be discussed under bone (next slide)
Take good care of yourself Tests
Tests
21
Imag
Ima ing
gg helps detect sneak attacks
Attack
Test
How The Test Works
Pros/Cons
Bone
X-Ray · X-Rays pass through
· Simple, cheap, can do whole
the body and create
create an
an
body
image on film
· Misses lesions where less than
30% of the bone has been
destroyed
MRI
·Magnetic field passes
· Shows plasmactyomas, marrow
through body to create
infiltration by tumor, spinal
a 3-D image
compression
· Expensi
pensive, takes
takes 30-60 min t
u es
tes,
covers limited area
PET
· Radioactive sugar
· Covers whole body, very
(FDG)
injected
j
and absorbed
sensitive in detecting potential
gp
by body's "most
tumor activity and changes
active" cells to create a
over time, rather than damage
whole body image
· Expensive, takes 90-150
"metabolic" activity
minutes
Take good care of yourself Tests
Tests
22
Imaging helps detect sneak attacks
Attack
Test
How The Test Works
Pros/Cons
Bone
CT
·X-Rt
Rays pass h
th
h
roug
· More precise than
ti
conven onal X-
(a.k.a.
the body and create
rays, clear, detailed images of
cat
a 3-D digital image
bone
scan)
· Expensive,
p, covers limited area,
contrast agents can be a kidney
issue
PET/
·Combi
bines PET
d
an
· Combi
bines ad
t
van ages f
o PET
d
an
CT
CT scans
CT, shows both past damage and
current activity, changes over
time
· Expensive, takes 90-150 minutes
Attack
Test
How The Test Works
Pros/Cons
Bone
X-Ray
·
X-Rays pass through the body and create an image on film
·
Simple, cheap, can do whole body
·
Misses lesions where less than 30% of the bone has been destroyed
MRI
·
Magnetic field passes through body to create a 3-D image
·
Shows plasmactyomas, marrow infiltration by tumor, spinal compression
·
Expensive, takes30-60 minutes, covers limited area
Take good care of yourself Tests
Tests X-RAY MRI
PET
PET (FDG)
·
Radioactive sugar injected and absorbed by body's "most active" cells to create a whole body image "metabolic"
·
Covers whole body, very sensitive in detecting potential tumor activity and changes over time
activity
·
Expensive, takes90-150minutes
23
Interpretin
p
g
retin Radiology/Pathology
/Patholo Results
· Your doctor should be
explaining your results
to you and discussing
anything you should
be doing based on the
results
· It's always a good
idea to get a copy of
the radiologist's
g
(imaging) or
pathologist's (biopsy)
report and, it's not
that hard to read! Just
look for the one
sentence summary
Take good care of yourself Te
Tests
24
Sneak Attacks Lab Tests
Under
Possible "Casualties"
Applicable tests
"Attack"
· Marrow/
· Anemia/fatigue
· RBC, HCT (red blood cells,
Blood
hematocrit),
· Infections
· WBC (white blood count)
· SPEP, IgA, IgM, IgG
(immunoglobulins)
· Bruising/bleeding
· PLT (platelets)
· Kidneys
· Kidney function
· Creatinine, BUN (blood urea
nitrogen), Creatinine
clearance,
clearance FreeLite, 24 hour
urine
· Immune
· Infections
· WBC (white blood count)
System
· SPEP, IgA, IgM, IgG
(immunoglobulins)
Take good care of yourself Tests
Tests
Blood Urine
25
Interpreting Lab Tests
· You are
entitled to
copies of lab
reports
showing your
results, don't
take no for an
answer
· Again, lots of
gobbledygook
but you can
just look for
the abnormal
results and
then discuss
those with your
doctor
Take good care of yourself LabTests
LabT
26
For More Info On Lab Tests
http://handbook.myeloma.org
http://www.labtestsonline.org/
http://www
Take good care of yourself LabTests
LabT
27
Keeping
pg track of all of this stuff
stuf
· If you plan on living a long time with
myeloma, you'd better get organized
· You need to set up
up file
file folders with
with the
the
various reports that you will no doubt
accumulate over the years
· "Flow sheets" and graphs can also be very
helpful for you
you and your doctor to
to
understand how things over time
Take good care of yourself LabTests
LabT
28
Flow sheets help
you track
track changes in
tests over time
· It's really just a fancy name
for a table showing different
test results by date
· Many cancer centers can
print these out for you from
their computer
computer system
· If not, you can also do this
on pap
pper. Or, if you're good
with the computer, a
spreadsheet
Take good care of yourself LabTests
LabT
29
...But, a picture is worth 1000 words
Lambda Light
Light
Chains
Chains
800
2/7/02
632
6/1/04
78
Lambda Light Chains
3/14/02
700
7/1/04
66
4/4/02
512
7/30/04
74
700
5/3/02
324
8/24/04
68
6/6/02
194
9/23/04
60
7/2/02
99
10/20/04
235
600
8/1/02
88
11/16/04
208
9/5/02
68
12/15/04
260
10/1/02
42
1/10/05
277
500
11
1 /4
1 /0
/4 2
/0
32
2/
2 7/05
258
12/3/02
34
3/8/05
277
1/2/03
36
4/4/05
361
400
1/26/03
26
5/2/05
470
2/24/03
34
5/31/05
468
3/25/03
16
6/20/05
525
300
4/21/03
15
7/25/05
475
5/20/03
20
8/23/05
405
6/24/03
17
9/19/05
411
200
8/6/03
17
10/16/05
315
9/13/03
47
11/14/05
272
10/9/03
65
12/13/05
252
100
11/5/03
69
1/9/06
255
12
1 /1
2 /0
/1 3
/0
77
2/10
1 /
0 06
0
306
12/30/04
79
3/6/06
125
2/2/04
56
4/3/06
161
-
3/2/04
70
5/1/06
129
02
2
3
00
03
03 00
04
004
05
05 005 06 06
3/26/04
83
5/30/06
126
/2002 /20
/20 /20
/20 /2004
7/20 /20
/20 /20
2/7 6/7
/7/2 2/7 6/7 /7/2 2/7 6/7
/7/2 2/ 6/7 /7/2 2/7 6/7
4/26/04
66
6/26/06
86
10
10
10
10
Take good care of yourself LabTests
LabT
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The IMF has built a powerful tool to
help patients manage
manage their information
information
Myeloma
Manag
Mana erTM
g
Personal Care
AssistantTM
Free download at http://manager.myeloma.org
http://manager
31
What Does It Mean To Be A
"Good" Patient
· D'
Don t't be "t
"too
d"
goo
· Take good care of yourself
· Be good to yourself
· Be good to your family
· Be
d
goo tf
to your felllow patitients
32
"G
"G--dd Helps
Them Who
Help
Themselves"
Bj
Benj
en am
j
in
i F
k
ran li
l
klin
kli
Poor Richard's Almanac
1757
33
Ho
H
wT
How
oB
wT
To
eA
oB
Be A
"Good Patient"
Patient
Patient/Family
International
Seminar
Myeloma
Washington, DC
August 7, 2009
Foundation
August 7,
Foundation