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1	
  
2	
  
There	
  are	
  important	
  consequences	
  to	
  not	
  ge4ng	
  valid	
  answers	
  to	
  cancer	
  advances.	
  	
  
Here	
  are	
  a	
  few	
  from	
  a	
  pa<ent	
  perspec<ve.	
  
	
  
Please	
  remember	
  the	
  next	
  <me	
  you	
  look	
  at	
  Kaplan-­‐Meier	
  curves,	
  they	
  represent	
  real	
  
people.	
  




                                                                                                                              3	
  
Enrolling	
  Pa<ents	
  in	
  Clinical	
  Trials	
                                                                                     10/17/09	
  




                      People	
  who	
  have	
  never	
  been	
  exposed	
  to	
  the	
  intricacies	
  of	
  cancer	
  treatment	
  
                      or	
  the	
  oncology	
  medical	
  process	
  are	
  overwhelmed	
  by	
  the	
  language	
  used	
  and	
  
                      the	
  decisions	
  that	
  must	
  be	
  made.	
  




PAIR:	
  Pa<ent	
  Advocates	
  In	
  Research	
                                                                                                4	
  
Making	
  Sense	
  of	
  Genomics	
  while	
  Protec<ng	
                                                                                                6/11/12	
  
People	
  




                It’s	
  <me	
  to	
  encompass	
  all	
  of	
  the	
  different	
  ‘systems’	
  that	
  make	
  up	
  one	
  human!	
  
                It	
  clearly	
  hasn’t	
  worked	
  to	
  segment	
  out	
  grants	
  and	
  studies	
  to	
  the	
  point	
  of	
  looking	
  at	
  
                one	
  small	
  piece	
  of	
  the	
  overall	
  human	
  puzzle.	
  	
  Let’s	
  look	
  at	
  how	
  each	
  part	
  throughout	
  
                the	
  human	
  system.	
  




©	
  PAIR:	
  Pa<ent	
  Advocates	
  In	
  Research	
  	
                                                                                                        5	
  
It’s	
  also	
  clear	
  from	
  the	
  ‘outside	
  looking	
  in’	
  that	
  physicists	
  and	
  biologists/cancer	
  
researchers	
  (and	
  pa<ent	
  advocates!)	
  ask	
  ‘Why’	
  &	
  challenge	
  assump<ons.	
  Some	
  also	
  
bring	
  up	
  uncomfortable	
  issues	
  and	
  are	
  never	
  sa<sfied.	
  
	
  
It’s	
  now	
  <me	
  to	
  focus	
  on	
  how	
  to	
  take	
  new	
  thinking	
  and	
  data	
  from	
  different	
  fields	
  and	
  
focus	
  on	
  ac<ons	
  and	
  steps	
  that	
  can	
  lead	
  us	
  to	
  beber	
  results	
  for	
  people.	
  
	
  
I	
  don’t	
  mean	
  to	
  insult	
  anyone,	
  but	
  I’m	
  changing	
  the	
  quip	
  “it’s	
  the	
  economy,	
  stupid!”	
  
to	
  help	
  us	
  focus	
  on	
  the	
  end	
  results	
  we’re	
  really	
  aeer.	
  
	
  




                                                                                                                                         6	
  
I	
  have	
  a	
  whole	
  series	
  of	
  words	
  that	
  are	
  commonly	
  used	
  by	
  everyone,	
  but	
  mean	
  very	
  
different	
  things.	
  
	
  
Here	
  is	
  an	
  example	
  of	
  how	
  the	
  medical/scien<fic	
  community	
  thinks	
  about	
  cure	
  (5	
  
year	
  survival	
  rate)	
  vs.	
  how	
  pa<ents	
  and	
  people	
  hear	
  the	
  word.	
  
We	
  need	
  to	
  STOP	
  using	
  the	
  word	
  “cure”	
  un<l	
  we	
  are	
  much	
  closer	
  to	
  the	
  public	
  
defini<on.	
  




                                                                                                                                    7	
  
So,	
  I	
  thought	
  I	
  would	
  extend	
  my	
  series	
  into	
  the	
  differences	
  in	
  terminology	
  between	
  
biology	
  and	
  physics,	
  with	
  the	
  intent	
  to	
  help	
  build	
  beber	
  understanding	
  of	
  why	
  this	
  is	
  
so	
  important.	
  
	
  
BTW,	
  the	
  biology	
  meanings	
  are	
  the	
  first	
  line	
  under	
  each	
  word,	
  and	
  the	
  physicist	
  
meanings	
  are	
  at	
  the	
  bobom	
  in	
  case	
  it	
  wasn’t	
  clear.	
  ;-­‐)	
  




                                                                                                                                      8	
  
9	
  
10	
  
Here	
  is	
  a	
  first	
  abempt	
  to	
  further	
  define	
  and	
  correlate	
  the	
  processes	
  that	
  biology	
  and	
  
physics	
  use.	
  
	
  
NOTE:	
  THESE	
  MAY	
  NOT	
  BE	
  ACCURATE!!!!	
  
	
  
I	
  would	
  like	
  to	
  work	
  with	
  some	
  of	
  you	
  to	
  actually	
  develop	
  this	
  as	
  a	
  tool	
  that	
  might	
  
help	
  PS-­‐OCs	
  communicate	
  more	
  effec<vely	
  together,	
  and	
  to	
  the	
  external	
  
communi<es	
  that	
  need	
  to	
  be	
  involved.	
  




                                                                                                                                             11	
  
There	
  seems	
  to	
  be	
  a	
  major	
  emphasis	
  in	
  the	
  NCI	
  PS-­‐OC	
  program	
  on	
  ‘new	
  ideas’,	
  but	
  
aeer	
  hearing	
  4	
  days	
  of	
  intense	
  and	
  wonderful	
  discussions,	
  I	
  think	
  it	
  would	
  be	
  beber	
  
to	
  focus	
  on	
  how	
  to	
  CONNECT	
  ideas	
  that	
  have	
  already	
  been	
  published	
  out	
  there	
  
somewhere	
  together	
  in	
  new	
  ways	
  so	
  we	
  can	
  actually	
  MOVE	
  the	
  BALL	
  forward	
  toward	
  
results	
  for	
  people.	
  
	
  
It	
  is	
  also	
  clear	
  that	
  the	
  physics	
  world	
  may	
  not	
  understand	
  just	
  how	
  different	
  specific	
  
types	
  of	
  cancers	
  are	
  in	
  rela<on	
  to	
  each	
  other.	
  	
  While	
  we	
  hear	
  that	
  cancers	
  have	
  
common	
  pathways,	
  the	
  way	
  tumors	
  work	
  and	
  interact	
  with	
  their	
  environment	
  can	
  be	
  
very	
  different	
  in	
  various	
  parts	
  of	
  the	
  body.	
  
In	
  other	
  words,	
  we	
  can’t	
  just	
  take	
  an	
  observa<on	
  or	
  experiment	
  from	
  one	
  kind	
  of	
  
cancer	
  and	
  automa<cally	
  assume	
  that	
  it	
  works	
  that	
  way	
  in	
  every	
  kind	
  of	
  cancer.	
  
	
  
I	
  was	
  also	
  shaken	
  a	
  bit	
  by	
  the	
  terminology	
  used	
  to	
  describe	
  leeover	
  cells	
  in	
  the	
  body	
  
that	
  might	
  develop/have	
  resistance	
  to	
  exis<ng	
  cancer	
  therapies	
  (regarding	
  Mul<-­‐
Drug	
  Resistance	
  known	
  as	
  MDR).	
  
	
  
We	
  need	
  to	
  come	
  up	
  with	
  a	
  beber	
  term	
  than	
  ‘survivor’	
  cells	
  quickly	
  before	
  this	
  
becomes	
  yet	
  one	
  more	
  unfortunate	
  misnomer.	
  




                                                                                                                                            12	
  
Just	
  some	
  points	
  that	
  need	
  to	
  be	
  said	
  out	
  loud	
  so	
  we	
  don’t	
  have	
  to	
  live	
  with	
  the	
  
consequences	
  of	
  hidden	
  assump<ons!	
  




                                                                                                                                          13	
  
These	
  were	
  some	
  ideas	
  that	
  can	
  up	
  during	
  the	
  4	
  day	
  discussions	
  that	
  seemed	
  
       important	
  to	
  follow	
  up.	
  
	
  




                                                                                                                               14	
  
This	
  is	
  how	
  I	
  see	
  the	
  value	
  of	
  the	
  Princeton	
  PS-­‐OC.	
  




                                                                                          15	
  
These	
  were	
  ideas	
  that	
  came	
  to	
  mind	
  that	
  the	
  Princeton	
  PS-­‐OC	
  could	
  pursue.	
  




                                                                                                                      16	
  
These	
  ideas	
  came	
  up	
  from	
  the	
  4	
  days	
  of	
  discussion	
  (including	
  the	
  Interna<onal	
  
Workshop)	
  that	
  need	
  to	
  be	
  pursued	
  by	
  the	
  larger	
  community	
  of	
  physicists	
  and	
  
oncology	
  scien<sts/clinicians.	
  
	
  
I’m	
  par<cularly	
  interested	
  in	
  what	
  you	
  think	
  about	
  these	
  ideas,	
  and	
  how	
  we	
  might	
  
start	
  to	
  develop	
  them.	
  
#1	
  seems	
  like	
  a	
  no-­‐brainer,	
  frankly.	
  
And	
  #2	
  is	
  completely	
  doable	
  with	
  those	
  of	
  us	
  who	
  have	
  direct	
  pa<ent	
  community	
  
network	
  capabili<es.	
  




                                                                                                                              17	
  
Since	
  so	
  much	
  money	
  is	
  being	
  spent	
  on	
  the	
  NCI	
  TCGA,	
  it’s	
  <me	
  for	
  the	
  PS-­‐OC	
  network	
  
to	
  ask	
  for	
  the	
  addi<onal	
  data	
  they	
  need	
  to	
  do	
  something	
  with	
  it.	
  
Frankly,	
  this	
  seems	
  like	
  the	
  only	
  way	
  the	
  huge	
  sums	
  spent	
  on	
  TCGA	
  will	
  get	
  us	
  
anywhere!	
  




                                                                                                                                           18	
  
Thanks	
  for	
  your	
  interest.	
  
	
  
Please	
  send	
  comments	
  to	
  me	
  at	
  Deborah@tumor<me.com	
  	
  
-­‐	
  Or	
  -­‐	
  	
  	
  
post	
  them	
  at	
  the	
  LinkedIn	
  NCI	
  Office	
  of	
  Physical	
  Sciences	
  –	
  Oncology	
  group	
  at	
  
hbp://www.linkedin.com/groups?home=&gid=4536998&trk=anet_ug_hm.	
  




                                                                                                                         19	
  

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Clinical & Patient Perspective on the NCI PS-OC by Collyar

  • 3. There  are  important  consequences  to  not  ge4ng  valid  answers  to  cancer  advances.     Here  are  a  few  from  a  pa<ent  perspec<ve.     Please  remember  the  next  <me  you  look  at  Kaplan-­‐Meier  curves,  they  represent  real   people.   3  
  • 4. Enrolling  Pa<ents  in  Clinical  Trials   10/17/09   People  who  have  never  been  exposed  to  the  intricacies  of  cancer  treatment   or  the  oncology  medical  process  are  overwhelmed  by  the  language  used  and   the  decisions  that  must  be  made.   PAIR:  Pa<ent  Advocates  In  Research   4  
  • 5. Making  Sense  of  Genomics  while  Protec<ng   6/11/12   People   It’s  <me  to  encompass  all  of  the  different  ‘systems’  that  make  up  one  human!   It  clearly  hasn’t  worked  to  segment  out  grants  and  studies  to  the  point  of  looking  at   one  small  piece  of  the  overall  human  puzzle.    Let’s  look  at  how  each  part  throughout   the  human  system.   ©  PAIR:  Pa<ent  Advocates  In  Research     5  
  • 6. It’s  also  clear  from  the  ‘outside  looking  in’  that  physicists  and  biologists/cancer   researchers  (and  pa<ent  advocates!)  ask  ‘Why’  &  challenge  assump<ons.  Some  also   bring  up  uncomfortable  issues  and  are  never  sa<sfied.     It’s  now  <me  to  focus  on  how  to  take  new  thinking  and  data  from  different  fields  and   focus  on  ac<ons  and  steps  that  can  lead  us  to  beber  results  for  people.     I  don’t  mean  to  insult  anyone,  but  I’m  changing  the  quip  “it’s  the  economy,  stupid!”   to  help  us  focus  on  the  end  results  we’re  really  aeer.     6  
  • 7. I  have  a  whole  series  of  words  that  are  commonly  used  by  everyone,  but  mean  very   different  things.     Here  is  an  example  of  how  the  medical/scien<fic  community  thinks  about  cure  (5   year  survival  rate)  vs.  how  pa<ents  and  people  hear  the  word.   We  need  to  STOP  using  the  word  “cure”  un<l  we  are  much  closer  to  the  public   defini<on.   7  
  • 8. So,  I  thought  I  would  extend  my  series  into  the  differences  in  terminology  between   biology  and  physics,  with  the  intent  to  help  build  beber  understanding  of  why  this  is   so  important.     BTW,  the  biology  meanings  are  the  first  line  under  each  word,  and  the  physicist   meanings  are  at  the  bobom  in  case  it  wasn’t  clear.  ;-­‐)   8  
  • 10. 10  
  • 11. Here  is  a  first  abempt  to  further  define  and  correlate  the  processes  that  biology  and   physics  use.     NOTE:  THESE  MAY  NOT  BE  ACCURATE!!!!     I  would  like  to  work  with  some  of  you  to  actually  develop  this  as  a  tool  that  might   help  PS-­‐OCs  communicate  more  effec<vely  together,  and  to  the  external   communi<es  that  need  to  be  involved.   11  
  • 12. There  seems  to  be  a  major  emphasis  in  the  NCI  PS-­‐OC  program  on  ‘new  ideas’,  but   aeer  hearing  4  days  of  intense  and  wonderful  discussions,  I  think  it  would  be  beber   to  focus  on  how  to  CONNECT  ideas  that  have  already  been  published  out  there   somewhere  together  in  new  ways  so  we  can  actually  MOVE  the  BALL  forward  toward   results  for  people.     It  is  also  clear  that  the  physics  world  may  not  understand  just  how  different  specific   types  of  cancers  are  in  rela<on  to  each  other.    While  we  hear  that  cancers  have   common  pathways,  the  way  tumors  work  and  interact  with  their  environment  can  be   very  different  in  various  parts  of  the  body.   In  other  words,  we  can’t  just  take  an  observa<on  or  experiment  from  one  kind  of   cancer  and  automa<cally  assume  that  it  works  that  way  in  every  kind  of  cancer.     I  was  also  shaken  a  bit  by  the  terminology  used  to  describe  leeover  cells  in  the  body   that  might  develop/have  resistance  to  exis<ng  cancer  therapies  (regarding  Mul<-­‐ Drug  Resistance  known  as  MDR).     We  need  to  come  up  with  a  beber  term  than  ‘survivor’  cells  quickly  before  this   becomes  yet  one  more  unfortunate  misnomer.   12  
  • 13. Just  some  points  that  need  to  be  said  out  loud  so  we  don’t  have  to  live  with  the   consequences  of  hidden  assump<ons!   13  
  • 14. These  were  some  ideas  that  can  up  during  the  4  day  discussions  that  seemed   important  to  follow  up.     14  
  • 15. This  is  how  I  see  the  value  of  the  Princeton  PS-­‐OC.   15  
  • 16. These  were  ideas  that  came  to  mind  that  the  Princeton  PS-­‐OC  could  pursue.   16  
  • 17. These  ideas  came  up  from  the  4  days  of  discussion  (including  the  Interna<onal   Workshop)  that  need  to  be  pursued  by  the  larger  community  of  physicists  and   oncology  scien<sts/clinicians.     I’m  par<cularly  interested  in  what  you  think  about  these  ideas,  and  how  we  might   start  to  develop  them.   #1  seems  like  a  no-­‐brainer,  frankly.   And  #2  is  completely  doable  with  those  of  us  who  have  direct  pa<ent  community   network  capabili<es.   17  
  • 18. Since  so  much  money  is  being  spent  on  the  NCI  TCGA,  it’s  <me  for  the  PS-­‐OC  network   to  ask  for  the  addi<onal  data  they  need  to  do  something  with  it.   Frankly,  this  seems  like  the  only  way  the  huge  sums  spent  on  TCGA  will  get  us   anywhere!   18  
  • 19. Thanks  for  your  interest.     Please  send  comments  to  me  at  Deborah@tumor<me.com     -­‐  Or  -­‐       post  them  at  the  LinkedIn  NCI  Office  of  Physical  Sciences  –  Oncology  group  at   hbp://www.linkedin.com/groups?home=&gid=4536998&trk=anet_ug_hm.   19