Fatal to Fearless, page 26
chemotherapy treatments, 123, 125, 128, 134, 136–37, 142, 205
Clark, Jack, 57, 59–60, 63
CLIA (Clinical Laboratory Improvement Act) regulations, 231
clinical cancer centers, 87
clinical trials (Step 8)
access to, 94, 155, 157–58
COVID-19 pandemic and, 223
donor lymphocyte inclusion and, 155–56
eligibility criteria for, 154, 158, 162, 163–64
enrollment in, 146
informed decision on, 158, 162–63, 240
investigator-initiated trials, 158, 160
knowing what to look for, 158, 161–63, 165
Multiple Myeloma Research Foundation and, 83, 155, 166, 170, 255
patient and research foundations, 158, 160–61
PCR (polymerase chain reaction) test and, 156–57
phase 1 and 2 trials, 158, 159
phase 3 trials, 158, 159
phase 4 trials, 158, 160
recurrences and, 151
resources on, 34, 158, 160–61
searching for, 22, 70, 79, 154, 157–58
time commitment for, 158, 162
trial design and protocols, 158, 161, 162, 164
trial location, 158, 162
types of trials, 158–60
WTDs for, 158–63
ClinicalTrials.gov, 154, 158, 160, 161, 165
colonoscopies, 206, 211, 215, 218
communication, 91, 181–82, 195, 198, 257–58
community hospitals
clinical trials and, 159, 165
data-generating companies
working with, 114
integration of care and, 87, 92, 94–95
local care and, 78, 85, 88–89
lung cancer care and, 116
comprehensive cancer centers, 87
computed tomography (CT) scans, 109
core interventions, 134, 136
COVID-19 pandemic, 133, 147, 221, 222–27, 233–34, 248, 251
critical success factors (CSFs), 64–65
Dana-Farber Cancer Institute, Boston, 61, 78–79, 86–87, 104, 121, 155–56, 166, 240
data-generating companies, 108, 114
decisions
clinical trials and, 158, 162–63, 240
end-of-life decisions, 197, 200, 201
knowledge partner and, 196
depression, 143, 147–48, 153, 179, 199, 257
diagnosis (Step 1)
background noise of, 78
confirmation of, 20
diagnostic tests, 99, 107, 108–12, 113, 114, 222, 223, 227–28, 230, 234, 235
hidden benefits of, 51–52
process of, 18
researching on, 3, 8, 9–12, 15–17, 22, 23, 26–27, 29, 42, 239, 246
stage level and, 26, 28, 29, 35
unknowns of, xiii, xiv, 3
WTDs for, 8–9, 13, 14–15
diet, healthy diet, 222, 228, 231, 232, 234
disease foundations, 8, 13, 17, 35–36, 66–67, 71, 161, 202–3
disease-specific.orgs, 8, 11
distribution of information, 87, 92–93
donor lymphocyte infusion (DLI), 155–56
Doyle, Glennon, 258
drug treatments
clinical trials and, 151, 159–60
delivery methods and, 119, 134, 140, 146
development of, 145, 146, 154
drug-drug interactions and, 142–43
purpose of, 119, 121
side effects and, 122, 134, 141
Ebright, Deena, 210, 225–27
electronic health record (EHR), 213
emotional needs, 178, 179
emotional support, 77, 78, 85, 90, 91, 195, 197
end-of-life decisions, 197, 200, 201
ER-positive (estrogen positive), 107, 236
expiration dates, in search results, 8, 12
Family and Medical Leave Act (FMLA), 196, 201
Family Caregiver Alliance, 200
family history, 212–13
family medicine doctors, 229
family members, xi, 17, 90, 197, 222–23, 228–33, 240, 256
fatigue, 144, 179
FDA, 83, 101, 115, 155, 157, 160, 164, 231
fearlessness, xii, xiv, 241, 246, 254–55, 256, 258
fecal immunochemical test (FIT), 219
Ferris, Andrea, 114–16
fertility issues, 4, 19, 21, 43, 46–49, 143–44, 209, 211
fightcancer.org, 15
financial concerns, 29–33, 38–39, 144, 178, 180, 235. See also insurance coverage
friends, 36, 86, 91
general practitioners, 229
genetic biomarkers, 111, 231
genetic testing, 228, 231
genome sequencing, 231
genomics testing, 107, 111, 112, 207, 208
Global Healthcare Initiative, 209, 220, 225
Goldsmith, Patricia, 201–3
Gottman, Jon, 258
graft versus host (GVH) disease, 129
Grant, Adam, 55–56, 258
Greipp, Philip, 28, 39–40, 46–47, 59
Hamilton, Scott, 147
Harvard Business School Kraft Precision Medicine Accelerator, 220–21, 255
healthcare system
access to care, 219, 234
changes needed in, xii, xiii, 245, 254–55
complexity of, xi, xiii–xiv
databases on diseases and, 154
diagnostic testing and, 99
fragmentation of, xiv, 97, 245, 254
goals of, 66
integration of care and, 91
policy reforms and, 234–35
healthcare team, 66, 71, 89. See also medical team
health habits, 222, 228, 231–33
Heller, Al, 4, 24–25, 42
hematologist-oncologists (heme-oncs), 17, 29, 35, 86, 91, 138, 179
Hoffman, Mitch, 175–76
hospice care, 196, 201, 249–50
Hudis, Clifford, xiii–xiv, 93–95
immunotherapies, 107, 112, 115, 119, 134, 136–37, 145–46, 170
indolent disease, 134, 135
induction therapy, 121–22, 125, 134, 136, 137
insurance coverage
action plan and, 70
case manager and, 66, 71
disputing bills and, 180
for follow-up tests, 29
in-network versus out-of-network providers, 33, 38, 229
KG’s career providing, 42–43
logistics partner and, 197
management of, 240
medical team and, 77
for multicancer early-detection tests, 231
out-of-pocket expenses and, 29–33, 39, 229, 240
palliative care and, 200
pitfalls of, 38–39
plan details and, 32–33
for screenings, 211
short-term disability terms and, 25, 42
specialists and, 25, 29, 30–33, 35, 37–39
for stem cell transplants, 26
surprise bills and, 30–31, 38, 39
telemedicine and, 223
tests and, 99, 108, 113–14
treatments and, 136, 140, 144
integration of care
distribution of information and, 87, 92–93
medical centers and, 87, 92, 94–95
medical team and, 87, 91, 92, 94–95, 240
personal team and, 87, 92
specialists and, 87, 91, 94–95, 240
WTDs for, 87, 91–93
internal medicine doctors, 229
International Myeloma Society (IMS), 96–98, 100
International Myeloma Workshop, 61, 96
Jaouad, Suleika, 181, 258
Kamal, Arif, 70–71
key opinion leaders (KOLs), 13
Knudsen, Karen E., 15–17
laboratory cancer centers, 87
leading sites, 8, 10–11
Lebowitz, Peter, 145–46
Lefkofsky, Eric, 231
liver enzymes, 101, 123, 126
losses, mourning of, 51–52
low-dose computed tomography (LDCT), 215
lung cancer, 110, 114–16, 205
McClellan, Mark, 233–35
magnetic resonance imaging (MRI), 109, 209–10, 214, 226, 236, 237
maintenance therapy, 134, 135, 138–39, 152–57
mammography, 109–10, 206, 209, 211, 214
Marut, Edward, 48, 57, 59
May, Folasade (Fola), 217–19
Mayo Clinic Cancer Center, Rochester, Minnesota, 11, 27–29, 39–40, 42, 87–88, 103–4, 207, 232–33
MD Anderson, Houston, Texas, 88
Medicaid, 32, 38, 136, 180, 197, 200, 229
medical deserts, 219
medical errands, 196–97
medical meetings, 8, 12
medical oncologists (med-oncs), 34, 86, 91, 179, 237
medical team
building of, 85, 86, 87–89, 94, 239
care based on needs and wants, 77, 78, 89
choosing of, 79–80
clinical trials and, 161, 163, 164, 165
integration of care, 87, 91, 94–95, 240
lead doctor and hospital, 86, 88–89
physical needs and, 179
types of medical centers, 86, 87–88, 92
WTDs for, 86, 87–89
Medicare, 32, 38, 66, 114, 136, 180, 197, 200, 229
meditation, 139, 228, 233
Memorial Sloan Kettering, New York, 87
menopause, 143–44
mindfulness practices, 139, 228, 233
minimal residual disease (MRD), 146, 157, 166
Mt. Sinai Hospital, New York City, 29, 86, 210, 236, 240, 251
multicancer early-detection tests (MCEDs), 228, 230–31
Multiple Myeloma Research Foundation (MMRF)
Advocacy Days on Capitol Hill, 125
clinical trials and, 83, 100–101, 155, 166, 170, 255
COVID-19 pandemic and, 223, 225
database of patients’ questions, 154
drug development and, 82–83, 100–101, 117, 121, 206, 238, 255
establishment of, 72–73, 255
fundraisers for, 73, 83, 84, 85, 125, 238, 246
Paul Giusti’s career at, 220–21, 223, 225, 246
growth of, 82, 95, 96, 117, 124–25
KG’s career at, xi, 82, 83, 96–98, 100–102, 105–6, 116–18, 124–25, 152–54, 156, 166, 170, 172, 174, 176–77, 185–86, 204, 206–8, 220–21, 223, 225, 238, 246, 254, 255
minimal residual disease and, 157
multicenter tissue banks and, 102
precision medicine and, 204, 206, 220–21
research grants and, 73, 82, 96, 255
National Cancer Advisory Board, 204
National Cancer Institute (NCI), xi, 11, 70–71, 87–88, 160, 163–65, 197–98
National Comprehensive Cancer Network (NCCN), 136
National Hospice and Palliative Care, 200
National Institutes of Health (NIH), 87, 231–32
National Library of Medicine, 142–43
neuropathy, 142
next-generation sequencing (NGS), 111
nonprofits, 66–67
Northhouse, Laurel, 197–98
North Star
action plan and, 69
establishing of, 50, 51, 54–55, 56, 62
resets and, 50, 177, 178, 180, 253
Norton, Larry, 191–92, 208
Obama, Barack, 204, 206, 220
occupational therapy, 179
oncology social workers, 95
oral complications, 142
oral treatments, 134, 140
pain management, 139
palliative care resources, 196, 200, 249
patient navigators, 54, 66, 71, 89, 95
patient portals, 9, 14–15, 95, 112–13
PCR (polymerase chain reaction) test, 156, 157, 166
personalized medicine approach, 99, 106–7, 110–11
personal team. See also caregiving team (Step 10)
advocacy and, 77, 90, 91
complications from physical care affecting, 86
emotional support and, 77, 78, 85, 90, 91, 195, 197
integration of care and, 87, 92
KG’s the eight team and, 63, 80, 83–85, 86, 123, 127, 130, 147, 152, 175, 176, 225, 247, 252, 253, 256, 258
roles of family members, 86, 90, 256
roles of friends, 86, 91
strength and integrity of, 169
WTDs for, 86, 87, 90–91
PET (positron emission tomography) scans, 101, 109, 120–21, 151–53
physical activity, 228, 231, 232, 234
physical complications, 134, 141–42
physical limitations, 144
physical therapy, 179
plasma cells, 28, 121
plastic surgeons, 86, 247, 248
Port, Elisa, 29, 209–10, 214, 226, 236–37, 247–48, 251
precision medicine, 100–108, 112–13, 115, 137, 204, 206, 208, 220–21
Precision Medicine Initiative (PMI), 204, 206–11, 220
Preferred Provider Organizations (PPOs), 31–32
prevention (Step 12)
Covid-19 pandemic and, 222, 223–27, 233–34
diagnostic testing and, 227–28, 230, 234
genetic testing and, 228, 231
health habits and, 222, 228, 231–33
multicancer early-detection tests (MCEDs), 228, 230–31
preventive science developments, xiv, 228, 230–31
primary care physicians and, 228–30, 234
urgency of, 222–23, 234, 239
WTDs for, 228–33
primary care physicians (PCPs), 228–30, 234
PSA tests, 111, 206, 216
radiation oncologists (rad-oncs), 35
radiation therapy, 35, 134, 136, 142, 205, 209–10, 236
Real, Terry, 258
recurrences, 150–51, 179
relationships
communication in, 181–82, 257, 258
maintaining of, 231
resets for, 170, 177–78, 181–84, 253, 256–58
remission, 146, 150–52, 156, 166, 171, 174, 246
resets (Step 9)
emotional needs, 178, 179
financial needs, 178, 180
lessons from, xv
of needs, 170, 177, 178, 179–80, 240–41
North Star and, 50, 177, 178, 180, 253
owning your story, 182–83, 254
physical needs, 178, 179
relationships and, 170, 177–78, 181–84, 253, 256–58
survivorship and, 169–70, 177–78
of wants, 170, 177, 178, 180, 256–58
what matters as personal reset, 42, 50, 55–56, 239
WTDs for, 178–82, 256–58
respite care, 196, 200–201
Revlimid, 83, 100, 121–23, 153–56
risk factors, 29, 85–86, 205–10, 212–13, 224, 226, 240
San Antonio Breast Cancer Symposium (SABCS), 12, 138
screenings (Step 11)
basic tests and timing, 212, 213–16
breast cancer, 212, 214
cervical cancer, 212, 214–15
colorectal cancer, 212, 215, 218–19
community screening events, 212, 217
COVID-19 pandemic and, 224, 226
family history and, 212–13
know your risk, 212
lung cancer, 215
medical history and, 212, 213, 227, 228
never missing, 212, 216–17
personal history and, 212, 213
plan for, 212, 217
prostate cancer, 212, 216
reminder services for, 212, 217
risk factors and, 205–10, 212–13, 240
schedule for, 212, 217
skin cancer, 212, 216
technological developments and, 222, 234, 235
WTDs for, 212–17
second opinions, 24, 25, 26–27, 29, 30, 35–37
setbacks, 64, 68–69, 239
Shankar, Maya, 55–56, 258
Sherman, Michael, 37–39
sleep hygiene, 139, 228, 233
Slivnik, David, 17–18, 25–26, 28
social media, 9, 13, 138
specialists (Step 2)
appointment companion and, 20, 27
confirming hypothesis and, 29
differences between specialties, 34–35
insurance coverage and, 25, 29, 30–33, 35, 37–39
integration of care and, 87, 91, 94–95, 240
medical reports for, 26
meeting with, 20, 24–28, 29, 30, 36, 239
preparation for, 30, 33–35
questions for, 33–34
role of, 37
second opinions and, 24, 25, 26–27, 29, 30, 35–37
stage level and, 26, 28, 29, 35
treatment options and, 20, 28, 29
WTDs for, 30–37
Stamford Hospital, 79–81, 127, 210
Steinmuller, Donald, 4–6, 17–18, 24
stem cell transplants
KG’s multiple myeloma treatment and, 61, 106, 118, 121, 126–32, 133, 147, 153, 156, 246
liquid tumors and, 119
for multiple myeloma, 22, 23, 26, 79, 81
Stewart, Keith, 207–8, 211
subscribe to sites, 8, 9, 13, 17
support. See also caregiving team (Step 10); personal team
action plan and, 63–67
broaden your circle, 51, 53–54
KG’s the eight team and, 63, 80, 83–85, 86, 123, 127, 130, 147, 152, 175, 176, 225, 247, 252, 253, 256, 258
long-term support, 90
outside support, 51, 54, 58, 195–96, 199–200, 202
physical limitations during treatment and, 144
supportive care, 134, 138–39
surgery, 134, 136
surgical oncologists, 34–35, 237
targeted therapy, 119, 134, 136, 137, 145
teams (Step 5). See also medical team; personal team
building of, 77–78, 80–81, 94, 239
integration of care and, 87, 91–93
WTDs for, 86–93
telemedicine, 20, 36, 223, 225, 227
tests (Step 6)
baseline tests and, 108, 112–13, 135
basic blood counts, 101, 107, 108
biomarker testing, 107–8, 110–11, 115–16
bone marrow biopsies, 26, 28, 40, 101–2, 120, 121, 151, 155, 156
for COVID-19 pandemic, 223, 224
diagnostic tests, 99, 107, 108–12, 113, 114, 222, 223, 227–28, 230, 234, 235
drug development and, 106
following your trends, 108, 113
genomics testing, 107, 111, 112
imaging tests, 107, 109–10, 135
immune profiling, 107, 112
insurance coverage and, 99, 108, 113–14
metabolic panel, 107, 108
myeloma blood tests, 209
PCR (polymerase chain reaction) test, 156, 157, 166
periodic tests, 85, 86, 95–96
