Welcome  back  to  awareness—the  Survivor  &  Patient  Advocacy  department’s  

newsletter  for  advocates.  As  the  leaves  are  changing  here  in  Philadelphia,  
so  continually  are  things  within  our  department,  including  the  structure  of  the  
newsletter.  We  wrapped  up  an  excellent  Scientist<-­>Survivor  Program  at  the  
Science  of  Cancer  Health  Disparities  Conference  in  Miami,  FL  at  the  begin-­
ning  of  October.  But  just  as  things  looked  to  be  winding  down,  we’ve  already  
begun  gearing  up  for  the  SSP  at  the  2011  AACR  102nd  Annual  Meeting.  
Applications  are  now  available  online:  apply  today!

CR  magazine  published  their  Fall  Issue,  with  a  special  feature  titled  Home-­
less  With  Cancer,  written  by  one  of  our  very  own  advocates,  Cynthia  Ryan.  
Be  sure  to  read  the  story,  and  check  the  Survivor  &  Patient  Advocacy  website  
for  an  upcoming  dialogue  between  two  advocates  on  cancer  and  homeless-­
ness.  This  issue  of  CR  also  includes  a  Q&A  with  Jai  Pausch,  the  wife  of  
Randy  Pausch,  whose  ‘Last  Lecture’  video  on  the  importance  of  living  life  to  
the  fullest  went  viral  shortly  before  his  death  from  pancreatic  cancer  in  2008.  
Jai  is  now  a  passionate  advocate  for  pancreatic  cancer—she  talks  about  life  
after  Randy  in  a  recent  CR  podcast,  A  New  Life.  As  November  is  Pancreatic  
Cancer  Awareness  Month,  as  well  as  National  Family  Caregiver  Month,  we  
decided  to  spotlight  pancreatic  cancer  caregivers  in  this  month’s  awareness.  
Three  volunteers  from  the  Pancreatic  Cancer  Awareness  Network  were  gra-­
cious  enough  to  comment  on  their  experience  as  a  caregiver  to  a  pancreatic  
cancer  patient  in  their  family.

November  is  also  nationally  recognized  as  Lung  Cancer  Awareness  Month,  
and  we’ve  included  many  links  to  articles  and  resources  targeted  toward  ad-­
vocates  on  both  lung  and  pancreatic  cancer.  As  always,  check  out  the  events   november  
::  features  ::  
section  for  ways  to  get  involved  in  your  communty.  And  of  course,  keep  the  
feedback  coming  to  advocacy@aacr.org  on  how  to  make  awareness  even  
better  for  the  next  issue.

Best,  
lung  cancer  and  
The  Survivor  &  Patient  Advocacy  Team
pancreatic  cancer
AACR  in  the  News
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       fruits  and  vegetables
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       Cancer  Therapy
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 ::  upcoming  events  ::

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November  10:    Understanding  Pancreatic  Cancer   Nov.  6:  Mastery  of  Myeloma  Course  
(GXFDWLRQDO/HFWXUHV Nov  7-­10:  Frontiers  in  Cancer  Prevention  Conference
November  12:    Facing  Pancreatic  Cancer  Together  at   Nov  9-­13:  Chemotherapy  Foundation  Symposium  
Froedtert  &  The  Medical  College  of  Wisconsin,  Clinical   Nov.  11:  Community  Updates  in  Oncology  2010:  
Cancer  Center   A  Focus  on  Head  and  Neck  Cancers  
November  13:  PANCAN’s  Pancreatic  Cancer  Awareness   Nov.  11-­13:  Multidisciplinary  Update  in  Breast  Diseases
Day  in  New  York,  NY   Nov.  11-­14:  School  of  Breast  Oncology
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tional  Lectures:  Nashville,  Tennessee sium  on  Molecular  Targets  and  Cancer  Therapeutics
November  17:  Genetics  of  Pancreatic  Cancer  Lecture  &   Nov.  17-­18:  ICC  Regional  Symposia  on  Minorities,  the  
Discussion  at  Gilda’s  Club   Medically  Underserved  &  Cancer
November  18:  Health  Chat-­Be  Pancreatic  Smart   Nov.  17-­18:  2010  National  Colorectal  Cancer  Round  
Table  (NCCRT)  Annual  Meeting  
/XQJ&DQFHU(YHQWV Nov.  18:  Psychosocial  and  Behavioral  implications  of  
BRCA  mutations  in  men:  Update  and  Future  Directions
Nov.  20:  Ovarian  Cancer  Survivors  Course
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Nov.  20:  Conversations  about  Colorectal  Cancer  
Nov.  9:  The  Thoracic  Oncology  Department  at  
Regional  Seminar
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Nov.  30-­Dec.  3:  Tumor  Immunology:  Basic  and  Clinical  
Awareness  Month  
Advances  
Nov.  9:  Sixth  Annual  Lung  Cancer  Symposium
Nov.  16:  NCCN  Webinar:  Treatment  Strategies  for  
Mesothelioma  

::  resources  for  lung  cancer  advocates  ::

There  are  many  resources  available  to  advocates  of  lung  
cancer.  All  advocates  should  be  aware  of  a  new  treatment  
option:  Diabetes  Drugs  May  Slow  Lung  Cancer.  
It’s  also  important  to  stay  on  the  cutting  edge  of  lung  cancer  
research.  Be  sure  to  check  out  What’s  New  in  Lung  Cancer:  
Update  from  the  2010  American  Society  of  Clinical  Oncol-­
ogy  (ASCO)  Annual  Meeting.  

And  always,  be  informed  of  ways  to  exert  your  advocacy.  
Know  the  organizational  priorities  of  the  organizations  you  
support.  A  great  example  of  such  transparency  can  be  
found  in  the  New  Directions  Factsheet  from  the  Lung  Can-­
cer  Alliance.

Stay  in  the  know  of  lung  cancer  legislative  priorities,  and  
take  a  moment  to  sign  a  petition  to  push  along  pending  leg-­
islation.  If  you’re  interested  in  taking  your  advocacy  a  step   Blogs  are  inspirational  resources  for  survivor  advocates  
further,  here’s  a  great  resource  for  contacting  the  media. and  patients  alike.  LUNGevity  has  a  blog  full  of  survivor  
stories  that  are  sure  to  empower  any  reader.
Word  of  mouth  is  crucial  to  spreading  awareness,  so  post  
these  public  service  announcements  to  Facebook,  tweet   And  if  that  wasn’t  enough,  here’s  a  succinct  list  of  
them  on  Twitter,  or  any  other  form  of  social  media  you  may   Seven  Ways  to  Support  Lung  Cancer!
use.
 ::  spotlight  on  pancreatic  cancer  caregivers  ::
Three  pancreatic  cancer  caregivers—all  of  whom  volunteer  for  the  Pancreatic  Cancer  Action  Network—share  their  
stories  of  the  challenges  and  rewards  of  being  a  care  giver.  One  of  the  deadliest  cancers,  pancreatic  cancer  survival  
rates  have  remained  stagnant—at  only  six  percent—for  the  past  40  years.  Survivorship  remains  so  low  because  there  
is  still  no  early  detection  method  and  no  effective  treatment.  According  to  PANCAN,  by  2030,  new  diagnoses  of  pan-­
creatic  cancer  are  projected  to  rise  55  percent.  While  these  statistics  are  discouraging,  it  is  comforting  to  know  that  an  
ever-­growing  network  of  pancreatic  cancer  caregivers  and  advocates  exists.  Todd  Cohen,  Colleen  Kmiecik,  and  An-­
drea  Bauer  all  graciously  contributed  their  voices  on  caregiving  to  the  Survivor  &  Patient  Advocacy  department  (SPA).

SPA:  How  did  you  come  to  adopt  your  role  as  a  caregiver?  
Todd:  Fortunately,  I  wasn’t  the  only  caregiver  for  my  father,  who  was  diagnosed  with  pancreatic  cancer  in  2001.  My-­
mother,  brother,  sister  and  sister-­in-­law  were  always  willing  to  lend  a  hand  and  as  they  say,  “The  more  the  merrier.”  It  
always  helps  when  you  have  a  team  of  people  to  give  support  and  share  the  responsibilities  (TEAM  =  “Together  Every-­
one  Achieves  More”).  When  I  learned  of  the  uphill  battle  that  he  was  facing,  I  knew  I  had  to  be  there  for  him  whenever  
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day  off  to  travel  with  him  to  his  chemotherapy  visits  or  the  hospital  for  any  additional  procedures  he  might  have  needed.    
It  was  important  for  me  to  spend  as  much  time  with  my  father  as  possible  and  constantly  remain  upbeat  and  optimistic  
no  matter  what  obstacles  were  presented.

SPA:  With  such  a  low  survival  rate  for  pancreatic  cancer  patients,  what  is  the  greatest  challenge  to  providing  optimistic  
care?
Andrea:  The  greatest  challenge  to  providing  optimistic  care  is  not  to  be  caught  up  in  the  statistics  and  to  focus  on  each  
day  that  we  were  given  with  my  mother.  My  mother  lived  her  life  as  a  “glass  half  full”  type  of  person  and  refused  to  give  
into  the  notion  that  just  because  the  survival  rate  was  low,  she  was  being  given  no  chance  for  survival.  We  spent  every  
day  living  life  as  though  nothing  had  changed,  despite  all  the  doctors’  appointments,  treatments,  and  bad  news.  It  is  
important  to  focus  on  what  you  can  control;;  providing  comfort  and  care  to  your  loved  one,  and  making  the  best  decisions  
for  their  course  of  treatment.

SPA:  What  do  you  feel  is  the  greatest  reward  to  being  a  pancreatic  cancer  caregiver?
Colleen:  While  caring  for  my  mom  was  one  of  the  greatest  challenges  in  my  life,  it  was  also  one  of  my  greatest  accom-­
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by  her  family,  who  was  providing  the  most  loving  care  possible.  Even  though  my  mom  suffered  throughout  her  illness,  it  
is  comforting  to  know  that  her  life  ended  as  peacefully  as  possible.

SPA:  Has  being  a  caregiver  led  you  toward  considering  yourself  to  be  an  advocate  for  pancreatic  cancer  as  well?  Why  
or  why  not?
Colleen:  Absolutely!  For  several  reasons:  1)  It  is  a  way  to  carry  on  my  mom’s  memory.  I  do  this  for  her  as  much  as  I  do  it  
for  others  who  have  been,  or  will  be,  diagnosed  with  pancreatic  cancer.  It’s  my  way  of  saying,  “Mom,  I  haven’t  forgotten  
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ers  don’t  have  to  endure  the  same  thing.  It’s  a  horrible  disease  and  no  one  deserves  it.

SPA:  Could  you  recommend  any  particular  resources  you  found  helpful  when  you  began  care  giving  that  you’d  want  to  
pass  on  to  fellow  cancer  caregivers?
Todd:  The  Survivor  and  Caregiver  network  of  PANCAN  puts  patients  and  their  families  in  touch  with  people  who  can  
share  their  experiences,  ask  questions  and  offer  support.  All  of  our  services  are  free  of  charge  and  patient  information  is  
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main  positive.  Miracles  do  happen  and  if  you  can  keep  thinking  that  you’re  going  to  beat  the  odds  and  defeat  pancreatic  
cancer,  you’re  just  another  in  the  line  of  people  who  continue  to  create  hope  for  others  in  beating  this  insidious  disease  
and,  to  borrow  a  line  from  the  Stand  Up  To  Cancer  campaign,  “making  cancer  history.”

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nosis  and  grasping  what  has  just  been  handed  to  you.  In  addition,  the  Pancreatic  Cancer  Action  Network  (www.pancan.
org)  is  an  amazing  resource  for  anyone  affected  by  Pancreatic  Cancer.  The  Patient  and  Liaison  Services  (PALS)  is  a  
comprehensive,  free,  information  service  for  pancreatic  cancer  patients,  their  families,  and  health  professionals.
 ::  resources  for  pancreatic  cancer  advocates  ::
A  recent  Q&A  in  the  Fall  Issue  of  CR  magazine  featured  Jai  Pausch,  whose  husband,  Randy  Pausch,  died  of  
Pancreatic  Cancer.  Randy  is  known  for  his  work  as  a  professor  at  Carnegie  Mellon,  when  his  ‘Last  Lecture’  
in  September  2007  went  viral  on  YouTube.  As  NCI  only  allots  two  percent  of  their  funding  toward  pancreatic  
cancer  research,  Jai,  and  many  others  who  have  been  affected  by  pancreatic  cancer.  An  outspoken  advocate  
for  increasing  funding  and  awareness  funding  for  pancreatic  cancer  research,  Jai  continues  to  advocate  on  her  
husband’s  behalf:

 ‡/LVWHQWR-DL3DXFK¶VA  New  Life  CR  Podcast

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How  can  YOU  get  involved  as  an  advocate  for  pancreatic  cancer?
Start  by  focusing  on  the  top  legislative  and  funding  priorities  by:  
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     funding  to  protect  on-­going  research  and  provide  new  research  opportunities  for  pancreatic  cancer

Be  inspired  by  a  model  advocacy  campaign:

PANCAN’s  ‘Be  a  Hero’  Campaign
Join  in  the  Fight  Against  Pancreatic  Cancer:  Know  It.  Fight  It.  End  It.  
The  campaign  focuses  on  two  areas:  
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  2)  Activating  the  organization’s  base  of  supporters  to  take  one  simple  action  every  day  
The  Hero  Campaign  runs  from  September  14  to  November  30  in  the  hopes  of  heightening  awareness  of  the  
disease.

Also,  here  is  a  comprehensive  info  sheet  to  distribute:  Pancreatic  Cancer  Facts  2010

photo  of  the  month  ::  

the  2010  SSP  participants  at  the  Science  of  Cancer  Health  Disparities  in  Miami,  FL