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Patient	
  experience:	
  	
  
The	
  first	
  billion	
  words
@brianloew
Patients aren’t patient
Medical treatment
“I am looking to
make contact with
people who have the
ALK gene and are
taking Crizotinib,
(Xalkori) (PF-1066).
I'm also looking to
hear about the Ariad
Drug, AP26113 and
LDK/378”
Practical advice from someone who understands
Michael, living with ALS
Friendship
“9th Annual
Ovarian
Survivors
Weekend in Fort
Lauderdale,
Florida. A time to
have fun with
your ovarian
"sisters."
Death
“I wish I could thank
every one of you who
inspired my Mom,
made her laugh, made
her cry and made her
keep fighting until the
end…Ovarian Cancer
really sucks. All of you
touched my Mom and
helped her find a teal
sisterhood.”
Celebration
“My husband
Gary is getting
new lungs right
now!! We are so
thankful for the
gift of life.”
Controversy
“Why make it even
more difficult for us?
I'm sorry, but it
makes me feel as if I
am being punished
for once being a
smoker!…Lung
cancer is lung
cancer…Let’s just find
a cure for lung cancer
for all of us together!”
Marriage
“Penny and I
found love on a
cancer web site
and that love is
what is keeping us
both committed to
battling lung
cancer and living
strong."
Anxiety
“Very worried for
my dad’s MRI
tomorrow…the
tumor started to
progress
minimally and
chemo was
changed 2 months
ago…I just want
my dad back.”
Disappointment and sadness
“My husband and
I have been trying
to get pregnant
for 8 years. We
have had 7
miscarriages and
one still birth. We
lost twins in June
of this year.”
Birth
“As I sit here about
to write this, I am
just in awe that I
have made it this
far. After a year of
IVF treatments, our
5th IUI resulted in
the delivery of two
precious Little
Ones…the best sight
EVER!”
Farewell
“I made friendships
stronger with some
of you than I have
flesh and blood
acquaintances..I
love you all and
want to thank you
for all our years
together. Follow
your heart and keep
looking up.”
Inspiration
“October will be 10
years since I heard
those words you have
cancer…I have a
daughter getting
married in 2 weeks
something I didn't
think I would see 10
years ago. Life is
good...hope this helps
those going forward.”
Hope
Michael, living with ALS

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Patient experience: The first billion words

  • 1. Patient  experience:     The  first  billion  words @brianloew
  • 3. Medical treatment “I am looking to make contact with people who have the ALK gene and are taking Crizotinib, (Xalkori) (PF-1066). I'm also looking to hear about the Ariad Drug, AP26113 and LDK/378”
  • 4. Practical advice from someone who understands Michael, living with ALS
  • 5. Friendship “9th Annual Ovarian Survivors Weekend in Fort Lauderdale, Florida. A time to have fun with your ovarian "sisters."
  • 6. Death “I wish I could thank every one of you who inspired my Mom, made her laugh, made her cry and made her keep fighting until the end…Ovarian Cancer really sucks. All of you touched my Mom and helped her find a teal sisterhood.”
  • 7. Celebration “My husband Gary is getting new lungs right now!! We are so thankful for the gift of life.”
  • 8. Controversy “Why make it even more difficult for us? I'm sorry, but it makes me feel as if I am being punished for once being a smoker!…Lung cancer is lung cancer…Let’s just find a cure for lung cancer for all of us together!”
  • 9. Marriage “Penny and I found love on a cancer web site and that love is what is keeping us both committed to battling lung cancer and living strong."
  • 10. Anxiety “Very worried for my dad’s MRI tomorrow…the tumor started to progress minimally and chemo was changed 2 months ago…I just want my dad back.”
  • 11. Disappointment and sadness “My husband and I have been trying to get pregnant for 8 years. We have had 7 miscarriages and one still birth. We lost twins in June of this year.”
  • 12. Birth “As I sit here about to write this, I am just in awe that I have made it this far. After a year of IVF treatments, our 5th IUI resulted in the delivery of two precious Little Ones…the best sight EVER!”
  • 13. Farewell “I made friendships stronger with some of you than I have flesh and blood acquaintances..I love you all and want to thank you for all our years together. Follow your heart and keep looking up.”
  • 14. Inspiration “October will be 10 years since I heard those words you have cancer…I have a daughter getting married in 2 weeks something I didn't think I would see 10 years ago. Life is good...hope this helps those going forward.”