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A Patients Perspective On Being Newly Diagnosed With GBM

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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 …

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.

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  • Thank you, I am a retired pediatric nurse. I cased managed children with pediatric cancer. Thank you for your wise article. My only word of caution, if you choose to use any supplement, is to be honest and open with your treatment team. Also, be open and understanding if they express to you that an ingredient in your supplement may interfere with treatment. Not all supplements cause interference, but there are a few that will. Do ask for help, your friends and family do not want to take away precious moments from your close relationships and often do not know what to do or say to offer help. If, you need your nurse to help provide quiet rest time from too many visitors, develop a 'sign' together that lets her know 'time to be the bad guy and shoosh people home.' Blessings to all patients, family and friends who are experiencing this horrible cancer. Our dearest friend has just relapsed and we are feeling all the emotions that relapse brings. We visual the stinkin thing floating skyward...by itself, leaving our friend here to continue to enjoy life as he always has.
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  • 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