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Page 17 – Patient Empowerment Network
Infographic not specific to cancer or CAR-T but useful background on how patients approach getting treatment
q1  2017  infographic  patient  sh1  social  media  research  sh2  ws1  18sbx  survey 
february 2019 by csrollyson
Great New Six Months post CAR-T – CLL Society
Doctor-patient talks about his CAR-T experience; Upenn "product" not yescarta nor kymriah
18sbx  sh1  ws3  bullsi  bullsi2  physician  patient  2018  cartcell 
february 2019 by csrollyson
Too Young For Cancer? | Everyday Health
A cancer physician and patient discuss how healthcare has neglected young adults in cancer research and treatment: they aren't young old people
millennial  cancer  social  stigma  treatment  fertility  interview  physician  patient  sh1  sh3  advocacy  young  adult  18sbx 
february 2019 by csrollyson
Comprehensive Guide For Young Adults | LIVESTRONG
How and why young adults have been neglected in cancer clinical trials and treatments;
18sbx  sh1  young  adult  student  fertility  side  effect  COC  insurance  social  stigma  awareness 
february 2019 by csrollyson
MY CANCER JOURNEY - arlenecotter.com
Must-see very unusual emotional account of NHL treatment cancer journey
sh1  ws2  ws3  NHL  journey  surprise  exceptional  bullsi  death  family  friend  transplant  allogenic  2ndline  18sbx 
february 2019 by csrollyson
Finding Freedom: My Cancer Journey and my PICC - Care+Wear
Great specific story about patient's PICC line during multiple rounds of chemo
NHL  sh1  chemotherapy  PICC  yoga  18sbx 
february 2019 by csrollyson
I Miss Cancer
Out of our orbit, but a different take on having cancer
sh1  emotion  treatment  18sbx  chemotherapy  family  reflection 
february 2019 by csrollyson
My Lymphoma-Free Victory Party: How to Plan Your Own
After cancer treatment: Fun post about celebrating successful lymphoma treatment
cancer  party  18sbx  sh1  lymphoma  ws3 
february 2019 by csrollyson
Lymphoma Has Inspired Me to Embrace a Better, New Normal
After cancer treatment: Radiant Rachel on how gratitude and mindfulness due to her lymphoma have changed her life for the better
sh1  18sbx  advocacy  ws3 
february 2019 by csrollyson
Three Months with Cancer: Love, Ideas and Vulnerability
Very frank, vulnerable account of his emotions during NHL treatment, and the role of mission in his recovery [no CAR-T though]
sh1  nhl  love  relationship  advocacy  suicide  highschool  mission  church  politics  exceptional  bullsi  18sbx 
february 2019 by csrollyson
The Chemo Years | My cancer journey
Exceptional humor, humanity and detail about her cancer journey (no CAR-T)
sh1  blog  bullsi  exceptional  brother  family  allogenic  transplant  advocacy  18sbx 
february 2019 by csrollyson
From “Incurable Cancer” to “Cancer Free” - How CAR T-Cell Immunotherapy Saved This 52-year old Lymphoma Patient
Interesting: seems like details are missing as post dated 2018 and it calls NHL "incurable" and "terminal" (misinformed CHP?)
sh4  sh1  example  cartcell  18sbx  2018  wisconsin 
february 2019 by csrollyson
Lindsay Norris – Here Comes the Sun
Oncology nurse starts blog to chronicle her treatment [no CAR-T but professional and raw at times]
sh3  sh4  sh1  18sbx  nurse  oncology  family  ATC 
february 2019 by csrollyson
Doctor Priorities vs. Patient Priorities
Interesting point: It's not unusual for cancer patients to priorities life events over treating their disease
sh3  sh4  sh1  conflict  lifestyle  cancer  example  disease  priority  treatment  ethics  communication  relationship  18sbx  bullsi 
february 2019 by csrollyson
What Patients Say, What Doctors Hear. Doctor-patient Communication
Physician shares experiences and statistics of patient–physician communication
medicine  sh1  sh3  18sbx  communication  Statistics  example  social  memory  physician  patient  EMR  history 
february 2019 by csrollyson
The One Thing That Patients Need The Most – Ruth Henderson – Medium
Superb caregiver account with *both parents* one w NHL + eye-popping examples of care lapses
sh1  sh2  advocacy  18sbx  nhl  canada  example  story  dementia  family  bullsi  patient  caregiver 
february 2019 by csrollyson
FAQs — MY CANCER ADVOCATE
Another avenue for studying care hand-offs [continuity of care]
cancer  patient  sh1  sh2  advocate  faq  18sbx  ws2  ws3  handoff  COC 
february 2019 by csrollyson
My Two-Decade Journey with Cancer Immunotherapy
Different, specific, and long: very informed Lymphoma survivor champions immunotherapy, including CAR-T, reviews its progress
sh1  bullsi  cartcell  advocate  18sbx  immunotherapy  history  treatment  ws3  bullsi2 
february 2019 by csrollyson
DLBCL is back - Lymphoma.com - Lymphoma Support and Help Forums!
Excellent discussion to support caregiver in first ATC visit for just-transformed DLBCL that needs third-line treatment, CAR-T mentioned
forum  sh2  caregiver  bullsi  DLBCL  atc  sh1  18sbx  bullsi2 
february 2019 by csrollyson
How and Why I Plan to Celebrate My Lymphoma Diagnosis Anniversary
FL patient celebrates his [cure]; very human and funny, links to more; doesn't mention CAR-T, but bullsi for humor & humanity ;^)
sh1  ws3  follicular  2019  q1  family  caregiver  children  celebration  bullsi  18sbx 
february 2019 by csrollyson
My Story - Two Strong
Pregnant mother learns she has DLBCL during first trimester. In remission after first line, but nice detail about pregnancy, home life with cancer
sh1  ws1  bullsi  blog  pregnancy  dlbcl  cancer  journey  18sbx  1stline  family  infection 
february 2019 by csrollyson
About Grady Vogt : My Cancer Story
Superb NHL patient blog, so authentic, and more raw than most, plus detailed. At present he is in remission after second line
nhl  sh1  bullsi  blog  journey  1stline  2ndline  18sbx 
february 2019 by csrollyson
My Cancer Story: An Interview With My Younger Brother - Shadow's Edge
Unique post: sister (patient) interviews her younger brother about his experience as sibling during her treatment
nhl  sh1  patient  blog  story  sibling  brother  18sbx  school  family  bullsi 
february 2019 by csrollyson
Lympho Bob: CAR-T posts
Voluminous blog of NHL patient includes his opinions and thoughts about CAR-T; he has NOT had CAR-T, was cured in 2010-2011
sh1  blog  nhl  patient  journey  experience  bullsi  2010  18sbx 
february 2019 by csrollyson
What if chemo does not work, Car-t? : lymphoma
Caregiver in Europe asks about U.S. CAR-T for his father; US patients talk about their experiences
sh2  sh1  cartcell  discussion  forum  europe  18sbx  bullsi  bullsi2 
february 2019 by csrollyson
Car T cell treatment : lymphoma
Patients and caregivers talking about CAR-T side effects and "value"
sh1  sh2  bullsi  ws2  patient  caregiver  discussion  forum  18sbx  bullsi2 
february 2019 by csrollyson
CAR T for DLBCL: What to Expect
WebMD's very short simple entry on CAR-T. Useful because thousands of patients and caregivers probably start here
sh1  sh2  ws1  ws2  reference  18sbx 
january 2019 by csrollyson
Dan's Story: My Experience With CAR T-Cell Therapy | Non-Hodgkin Lymphoma | Patient Power
NHL patient and his wife interviewed on video about their whole journey, which ended with CAR-T and total remission
sh2  sh1  nhl  ws1  ws2  ws3  bullsi  video  18sbx  bullsi2 
january 2019 by csrollyson
Mike Delia: Skiing with the Grandkids Thanks to CAR T-Cell Therapy
NHL patient case study for CAR-T clinical trial; an ATC ad with little detail
NHL  video  patient  sh1  ws1  ws2  ws3  advertising  ATC  18sbx  clinical  trial  example 
january 2019 by csrollyson
CAR-T and Follicular Non-Hodgkin's Lymphoma | CAR-T news and links as we encounter them… | Page 2
Follicular NHL CAR-T Patient created this info-blog with significant detail about WS3, After CAR-T
patient  sh1  blog  cartcell  ws3  bullsi  information  resources  18sbx 
january 2019 by csrollyson
Fight All the Way | Moffitt
NHL patient case study for CAR-T clinical trial; an ATC ad with little detail
NHL  patient  sh1  ws1  ws2  ws3  advertising  ATC  18sbx  clinical  trial  example 
january 2019 by csrollyson
'Super T-Cell' Therapy Stops Patient's Rare, Aggressive Lymphoma | OSUCCC – James
DLBCL patient case study for CAR-T clinical trial; an ATC ad with little detail
DLBCL  patient  sh1  ws1  ws2  ws3  advertising  ATC  18sbx  clinical  trial  example 
january 2019 by csrollyson
CAR-T Therapy: Lifeline to A Cure? - Cancer Health
2 YESCARTA case studies for NHL and PMBCL patients highlight ATC interactions and patient and ATC physician quotes
patient  yescarta  casestudy  sh1  sh4  ATC  NHL  transplant  ASCT  radiation  referral  ws1  ws2  cartcell  18sbx  PMBCL  Q1  2018  bullsi2  bullsi 
january 2019 by csrollyson
About – Chemo log
Superb detailed blog series by DLBCL patient in Silicon Valley
dlbcl  blog  patient  sh1  ws1  bullsi  18sbx  cartcell  highdose  chemotherapy  transplant 
january 2019 by csrollyson
decisions – getting closer and UCSF second opinion – Chemo log
Very detailed post on patient's cancer treatment decisions: here, CAR-T as second line vs. HDC/ASCT
patient  sh1  bullsi  dlbcl  ws1  chemotherapy  2ndline  3rdline  18sbx  insurance  hospital  ATC  sh4  bullsi2 
january 2019 by csrollyson
How the CAR-T Trial Gave Me My Life Back (Part 1) | Patient Power
Detailed story of 13 relapses to chemo, self-referral, searching for clinical trial and finally getting into one [multiple myeloma]
ws2  18sbx  referral  clinical  trial  bullsi  patient  sh1  family  friend  travel  chemotherapy  relapse  refractory 
january 2019 by csrollyson
Car-T treatment - Lymphoma.com - Lymphoma Support and Help Forums!
Several caregivers and patients discussing CAR-T as it intersects journeys
cartcell  ws1  ws2  patient  sh1  sh2  caregiver  bullsi2  forum  discussion  usa  canada  medical  tourism  ATC  18sbx 
january 2019 by csrollyson
Nice To Meet You, I'm Radiant Racheli
Post #1 of serial posts on Lymphoma treatment journey
blog  lymphoma  hodgkin  cancer  sh1  ws1  18sbx  patient 
january 2019 by csrollyson
New to the forum! DLBCL CAR-T - Lymphoma.com - Lymphoma Support and Help Forums!
Superb discussion started by caregiver whose husband is poised for Car-T to treat refractory DLBCL
cartcell  dlbcl  nhl  bullsi2  discussion  ws1  sh1  sh2  18sbx  chemotherapy 
january 2019 by csrollyson
Why you should always have cancer friends - Lymphoma Barbie
Terrific insouciant Lymphoma patient's blog covers all journey phases; this post on the importance of support group
lymphoma  cancer  emotion  friend  patient  sh1  ws1  support  attitude  18sbx  bullsi 
january 2019 by csrollyson
My Experience With Lymphoma - The Atlantic
Detailed patient journey with Lymphoma in his brain; deciding on treatment options, weighing life decisions, physical and emotional impacts
lymphoma  patient  story  journey  brain  sh1  2016  transplant  family  community  treatment  diagnosis  work  bullsi  support  18sbx 
january 2019 by csrollyson
When lymphoma comes back | Topics, Lymphoma, Cancer, People's Experiences | healthtalk.org
Authentic natural short vids [transcripts] of patient stories of learning about their relapses; reflections on first-line treatment and second-line
lymphoma  nhl  patient  stories  relapse  1stline  2ndline  emotion  family  uk  18sbx  cancer  ws1  sh1 
january 2019 by csrollyson
Non-Hodgkin’s lymphoma survivor: CAR T-cell therapy clinical trial put me in remission | MD Anderson Cancer Center
CAR-T-cell survivor briefly describes Emily Dumer's journey; interesting: after failure of chemo and a transplant at ATC, *local* doctor informs her about CAR-T
bullsi2  hospital  ATC  patient  story  cartcell  clinical  trial  2015  sh1  ws3  ws1  ws2  chemotherapy  transplant  DLBCL  RCHOP  ASCT  bullsi  18sbx 
january 2019 by csrollyson
Lymphoma Types, Symptoms, Signs & Survival Rates
Short (some caregiver) patient descriptions of discovering their lymphomas; useful because physician errors and attitudes show their effect
lymphoma  patient  story  onset  suspicion  sh1  sh2  sh3  physician  oncologist  PCP  diagnosis  cancer  18sbx  ws1 
january 2019 by csrollyson
Regaining My Life After a Diagnosis of Non‑Hodgkin Lymphoma
Young NHL patient tells his story of lymphoma and relapse; and second line treatment HDC/ABMT
patient  story  rchop  nhl  relapse  nurse  18sbx  community  emotion  sh1  ws1  hdcbmt  transplant  transfusion  stageii  lymphoma  ATC  travel  relocation  immigration  philippines  family  insurance  hdcabmt  bullsi 
january 2019 by csrollyson
indolent non-hodgkins lymphoma - Cancer - MedHelp
Thread includes physician and several patients and caregivers
nhl  patient  sh1  sh2  sh3  oncologist  physician  2008  bullsi  18sbx  cancer  community  forum 
january 2019 by csrollyson
The CAR T-cell Chicago story: One year later – Science Life
Hospital-produced patient story of successful CAR T treatment; also discusses how ATC and community oncologist collaborated
ATC  18sbx  story  patient  comdoc  atcdoc  bullsi  ws1  ws2  ws3  sh1  sh3  sh4  uchicago 
june 2018 by csrollyson
CGTalk - Moving to CA for art university
Short thread advising digital/graphics prospect studient
ws1  international  sh1  plan  work  california  gnomon  design  16ccc 
august 2016 by csrollyson
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