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Research & MBC:
Some Key Challenges
Katherine O’Brien
Secretary/PR
Metastatic Breast Cancer Network
www.MBCN.org
LBBC Thriving Together 2017
Some Basic Facts About Me…
• De novo diagnosis in 2009 with small
volume of bone mets
• Age 43 @ dx, will be 52 in 2017
• Now on 5th line of tx; liver & bone
mets
• Board member for MBCN; co-chair
MBC Alliance Public Awareness
Committee
• I am a volunteer
Some Key MBC Facts
 Metastasis is the cause of virtually
all breast cancer deaths
 Most people with early stage breast
cancer won’t go on to have a
metastatic recurrence—but 20 to 30
percent will and we don’t know why
 Most people with MBC were
previously treated for early stage
breast cancer; about 6 to 10
percent are Stage IV at diagnosis
 We don’t track metastatic
recurrence…the number of people
living with MBC is unknown: 155,000
is an estimate
LBBC Thriving Together 2017
Source: Shirley Mertz, MBCN.org
LBBC Thriving Together 2017
Research
Challenge
LBBC Thriving Together 2017
Source: http://www.pathophys.org/breast-cancer/breastcancer-copy/
Breast cancer isn’t just one
disease:
 Luminal A (40%)
“hormone receptor positive”
ER/PR+; HER2-
 Luminal B (20%)
ER+/PR-; HER2+
 HER2 positive (10-15%)
“HER2 enriched”
ER-/PR-,HER2+
 Basal-like (15-20%)
“triple negative” (TNBC)
ER/PR-; HER-
FYI: Subtypes &
Treatment
Source: Maura N. Dickler, MDLBBC Thriving Together 2017
• Your subtype information
is in your pathology
report. Ask your
oncologist/nurse if
you’re unsure.
• Subtype guides
treatment decisions
• Genomic testing
gaining traction
(Foundation One,
Guardant360)
Latest Research
News…
• ASCO: June 2-6, 2017
• SABCS: Dec. 5-9, 2017
• LBBC, MBCN, SHARE &
others offer webinars and
articles on key MBC news
from these conferences
LBBC Thriving Together 2017
Cancer stats are derived from US Population
(registry-based NCI SEER data):
 What we DO know: – Number of deaths
from breast cancer – Mortality rates
(overall, by race/ethnicity, state)
 Length of survival from initial diagnosis
 What we DON’T know:
– Prevalence (how many are living with MBC)
– Recurrence rates, timing of recurrence
– Survival (how long women live with MBC,
overall and by tumor subtype, treatment,
etc.)
 What we don’t count, we can’t plan for!
Source: Musa Mayer
LBBC Thriving Together 2017
Research Challenge:
Elusive MBC
Epidemiology
Sign the Change.org Petition
LBBC Thriving Together 2017
https://tinyurl.com/
TrackMBC
#TrackMBC
 US federal government is the largest
source of research funding (58% of
biomedical research at universities)
 National Institutes of Health (NIH) is
the primary US government agency for
biomedical research
 Between 2003 to 2015, NIH funding
declined 22%
 Proposed 2017 budget calls for 18.3% NIH
cut
 Cancer research in general is
underfunded (0.1% of the Federal
budget.) Other areas receive more
funding including the military, farm
subsidies and education.
Sources: Richard Harris, WSJ 4/8/2017; Natl Science Foundation,
MBC Alliance Landscape Analysis
Research
Challenge:
Consistent Funding
LBBC Thriving Together 2017
LBBC Thriving Together 2017
Source: The Cancer Letter, 10/31/2014
Research Challenges:
Time, Money & Logistics
It can take between 10 and 15
years to develop a drug, at a cost
of about US$800 million.
For every 5000 compounds tested,
it is estimated that only one will be
approved for use in patients.
MBC research is complicated,
costly and time-consuming (e.g.,
early breast cancer studies in
animals can be two or three
months; MBC animal studies can
take up to 9 months to run a single
set of animal experiments).
Meeting clinical trial enrollment
goals often takes longer than
researchers’ projections leading to
study delays
LBBC Thriving Together 2017
Research Challenge:
Clinical Trial Challenges
 Integrating our understanding of modern
genomics into the clinical trials process
 Example: One study found 40 different
mutational drivers of growth expressed in 100
breast cancers…with up to 73 different
combinations in those 100 patients.
 Obtain data quickly
 Design the trials that allow us the flexibility to
attack different targets within the same trial
 Get collaboration from the companies and from
the NCI that allows use of multiple agents
simultaneously in patients
 Need better informed consents
 Strategies to deal with the very real toxicities
that we'll get from combining these agents
LBBC Thriving Together 2017
Looking for a clinical trial?
LBBC Thriving Together 2017
Research Challenge:
Tissue is an Issue
•Better access to tissue is needed,
including the primary tumor and
interval blood samples collected
and banked between the primary
and development of the recurrent
metastatic tumor.
•MBC tissue from different
populations needs to be studied
(e.g., MBC in younger,
premenopausal women vs. MBC in
older women, MBC in men).
•You can help! There are tissue and
data collection initiatives.
LBBC Thriving Together 2017
 Very few advocates focus on MBC--WHY?
 Avoidance: Vast majority of advocates
are primary breast cancer survivors at
risk of recurrence “We are what the pink
crowd wants to forget because we are
the painful reminders of what can
happen.”
 Expertise required: Lack of knowledge
about complex MBC treatments and the
different issues that patients with MBC
face
 Lack of data: Incidence and prevalence
of MBC unknown, so basic tools for
advocacy are missing
Source: Musa Mayer
General Challenge:
The Lonely World of
MBC Advocacy
LBBC Thriving Together 2017
What can we do?
• Share your story
• Call/Lobby Elected Officials
• Sign Change.org petition
• Educate yourself
• LBBC Hear My Voice
• ABCF Hot Topic Mentor Sessions
• NBCC Project Lead
• CDMRP (DofD Reviewer)
LBBC Thriving Together 2017
Some Additional Resources
• MBCN/LBBC brochure for the newly
diagnosed (now in four languages)
• NCCN Guidelines—Revised Version Now
Online
• MBC Alliance Landscape Analysis
• BreastCancer.org
• Cure Magazine
LBBC Thriving Together 2017
Katherine O’Brien
MBCN.org
k.obrien@mbcn.org
LBBC Thriving Together 2017
Thank You!

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Metastatic Breast Cancer Research: Some Key Challenges

  • 1. Research & MBC: Some Key Challenges Katherine O’Brien Secretary/PR Metastatic Breast Cancer Network www.MBCN.org
  • 2. LBBC Thriving Together 2017 Some Basic Facts About Me… • De novo diagnosis in 2009 with small volume of bone mets • Age 43 @ dx, will be 52 in 2017 • Now on 5th line of tx; liver & bone mets • Board member for MBCN; co-chair MBC Alliance Public Awareness Committee • I am a volunteer
  • 3. Some Key MBC Facts  Metastasis is the cause of virtually all breast cancer deaths  Most people with early stage breast cancer won’t go on to have a metastatic recurrence—but 20 to 30 percent will and we don’t know why  Most people with MBC were previously treated for early stage breast cancer; about 6 to 10 percent are Stage IV at diagnosis  We don’t track metastatic recurrence…the number of people living with MBC is unknown: 155,000 is an estimate LBBC Thriving Together 2017
  • 4. Source: Shirley Mertz, MBCN.org LBBC Thriving Together 2017
  • 5. Research Challenge LBBC Thriving Together 2017 Source: http://www.pathophys.org/breast-cancer/breastcancer-copy/ Breast cancer isn’t just one disease:  Luminal A (40%) “hormone receptor positive” ER/PR+; HER2-  Luminal B (20%) ER+/PR-; HER2+  HER2 positive (10-15%) “HER2 enriched” ER-/PR-,HER2+  Basal-like (15-20%) “triple negative” (TNBC) ER/PR-; HER-
  • 6. FYI: Subtypes & Treatment Source: Maura N. Dickler, MDLBBC Thriving Together 2017 • Your subtype information is in your pathology report. Ask your oncologist/nurse if you’re unsure. • Subtype guides treatment decisions • Genomic testing gaining traction (Foundation One, Guardant360)
  • 7. Latest Research News… • ASCO: June 2-6, 2017 • SABCS: Dec. 5-9, 2017 • LBBC, MBCN, SHARE & others offer webinars and articles on key MBC news from these conferences LBBC Thriving Together 2017
  • 8. Cancer stats are derived from US Population (registry-based NCI SEER data):  What we DO know: – Number of deaths from breast cancer – Mortality rates (overall, by race/ethnicity, state)  Length of survival from initial diagnosis  What we DON’T know: – Prevalence (how many are living with MBC) – Recurrence rates, timing of recurrence – Survival (how long women live with MBC, overall and by tumor subtype, treatment, etc.)  What we don’t count, we can’t plan for! Source: Musa Mayer LBBC Thriving Together 2017 Research Challenge: Elusive MBC Epidemiology
  • 9. Sign the Change.org Petition LBBC Thriving Together 2017 https://tinyurl.com/ TrackMBC #TrackMBC
  • 10.  US federal government is the largest source of research funding (58% of biomedical research at universities)  National Institutes of Health (NIH) is the primary US government agency for biomedical research  Between 2003 to 2015, NIH funding declined 22%  Proposed 2017 budget calls for 18.3% NIH cut  Cancer research in general is underfunded (0.1% of the Federal budget.) Other areas receive more funding including the military, farm subsidies and education. Sources: Richard Harris, WSJ 4/8/2017; Natl Science Foundation, MBC Alliance Landscape Analysis Research Challenge: Consistent Funding LBBC Thriving Together 2017
  • 11. LBBC Thriving Together 2017 Source: The Cancer Letter, 10/31/2014
  • 12. Research Challenges: Time, Money & Logistics It can take between 10 and 15 years to develop a drug, at a cost of about US$800 million. For every 5000 compounds tested, it is estimated that only one will be approved for use in patients. MBC research is complicated, costly and time-consuming (e.g., early breast cancer studies in animals can be two or three months; MBC animal studies can take up to 9 months to run a single set of animal experiments). Meeting clinical trial enrollment goals often takes longer than researchers’ projections leading to study delays LBBC Thriving Together 2017
  • 13. Research Challenge: Clinical Trial Challenges  Integrating our understanding of modern genomics into the clinical trials process  Example: One study found 40 different mutational drivers of growth expressed in 100 breast cancers…with up to 73 different combinations in those 100 patients.  Obtain data quickly  Design the trials that allow us the flexibility to attack different targets within the same trial  Get collaboration from the companies and from the NCI that allows use of multiple agents simultaneously in patients  Need better informed consents  Strategies to deal with the very real toxicities that we'll get from combining these agents LBBC Thriving Together 2017
  • 14. Looking for a clinical trial? LBBC Thriving Together 2017
  • 15. Research Challenge: Tissue is an Issue •Better access to tissue is needed, including the primary tumor and interval blood samples collected and banked between the primary and development of the recurrent metastatic tumor. •MBC tissue from different populations needs to be studied (e.g., MBC in younger, premenopausal women vs. MBC in older women, MBC in men). •You can help! There are tissue and data collection initiatives. LBBC Thriving Together 2017
  • 16.  Very few advocates focus on MBC--WHY?  Avoidance: Vast majority of advocates are primary breast cancer survivors at risk of recurrence “We are what the pink crowd wants to forget because we are the painful reminders of what can happen.”  Expertise required: Lack of knowledge about complex MBC treatments and the different issues that patients with MBC face  Lack of data: Incidence and prevalence of MBC unknown, so basic tools for advocacy are missing Source: Musa Mayer General Challenge: The Lonely World of MBC Advocacy LBBC Thriving Together 2017
  • 17. What can we do? • Share your story • Call/Lobby Elected Officials • Sign Change.org petition • Educate yourself • LBBC Hear My Voice • ABCF Hot Topic Mentor Sessions • NBCC Project Lead • CDMRP (DofD Reviewer) LBBC Thriving Together 2017
  • 18. Some Additional Resources • MBCN/LBBC brochure for the newly diagnosed (now in four languages) • NCCN Guidelines—Revised Version Now Online • MBC Alliance Landscape Analysis • BreastCancer.org • Cure Magazine LBBC Thriving Together 2017