Index

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Note: The abbreviation KG refers to Kathy Giusti.

academic medical centers (AMCs), 85–89, 92, 94–95, 114, 157, 159, 203–4

action plan (Step 4)

blank sheet of paper and, 57, 59–62

building of, 58, 62–69, 239

caregiving team and, 65, 67, 69, 70–71

SMART actions, 68

specific actions, 64, 67–68

success and setbacks, 64, 68–69, 239

what you need, 63, 64–65

when you need support, 64, 67

who you need, 64, 65–67

WTDs for, 59, 63–69

active disease, 134, 135

Adams, Julian, 100–101

adjuvant therapy, 134, 136, 137

Affordable Care Act (www.healthcare.gov), 31, 32

American Academy of Sleep Medicine (sleepeducation.org), 139

American Association for Cancer Research (AACR), 12, 138

American Association of Family Practice Physicians (AAFP), 228–29

American Cancer Society (ACS)

Cancer Survivors Network and, 199

cervical cancer screening and, 215

collaboration and, 93

hotline of, 66–67

as information resource, 10, 15, 16, 17

LUNGevity’s collaboration with, 116

on multicancer early-detection tests, 230

patient support and, 54, 70–71

on respite care, 200

American Cancer Society Cancer Action Network (ACS CAN), 15–16, 30–31

American Society of Clinical Oncology (ASCO), xiii, 10–11, 12, 16, 93–94, 137–38, 142

American Society of Hematology (ASH), 12, 103, 105, 138

Anderson, Ken

bone marrow biopsies and, 101–2, 120, 151, 155

DNA twin studies and, 102–7

KG’s complete remission and, 151, 152

as KG’s lead physician, 78–79, 81, 85, 95–96, 120

KG’s multiple myeloma treatment and, 120–23

KG’s recurrence and, 155–56

KG’s risk factors and, 208

KG’s second opinion from, 26, 61

KG’s stem cell transplant and, 130, 132

PCR test and, 156–57

anxiety, 143, 147–48, 151, 179

apologies, 256–58

appointment companions, 20, 27, 69, 91

Attia, Peter, 258

Bar, Michael, 80–81, 85, 96

bench-to-bedside medicine, 88, 101

Bertagnolli, Monica M., 163–65

biomarkers, 26, 28, 40, 107–8, 110–11, 115–16, 150, 231

bisphosphonates, 79, 85, 95

blank sheet of paper, 45, 51, 57, 59–62, 180, 247

body image, 143, 179

body weight, 143, 228, 232

boundaries, 64, 183, 246, 258

Bowler, Kate, 181, 258

BRCA gene, 107, 111, 208, 210, 231

Brown, Brené, 182–84, 258

CancerCare, 54, 66, 200–203

cancer centers, 87, 158, 161

Cancer.gov, 11, 71, 160, 165, 200

Cancer.net, 10–11, 16, 71, 89, 94

Cancer.org, 10, 15, 16, 17, 71

Cancer Support Community, 200

Cancer Survivors Network, 199

Caregiver Action Network, 200

caregivers, 10, 17, 199, 202

caregiving team (Step 10)

action plan and, 65, 67, 69, 70–71

communication with, 195, 198

emotional support partner, 195, 197

empathy for, 187–88, 195, 199, 257

expanding your team, 195, 198, 201, 202–3, 256

friends and, 91

gratitude for, 65, 69, 90, 150, 181, 195, 199, 240, 258

hospice care and, 196, 201

knowledge partner and, 195, 196

know your caregivers’ needs, 195, 197–99, 201–2

know your caregiving needs, 195, 196–97

logistics partner, 195, 196–97

online support and, 195, 199–200

outside support and, 54, 195–96, 199–200, 202

palliative care resources, 196, 200

primary caregiver selection, 195, 198

recognition of, 187–201, 240

respite care, 196, 200–201

WTDs for, 195–201

CaringBridge, 126, 128

CAR T-cell therapy, 137, 146

case/care managers, 66, 71, 89, 197

cell therapies, 134, 136, 137, 146

Centers for Disease Control and Prevention (CDC), 213

Charity Navigator, 11

checkpoint inhibitors, 146

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

personalized medicine approach and, 99, 106–7, 110–11, 239

PET scans, 101, 109, 120, 121, 151, 152, 153

precision medicine approach and, 108, 112–13

WTDs for, 107–14

Topol, Eric, xiii–xiv

treatments (Step 7)

chemotherapy treatments, 123, 125, 128, 134, 136–37, 142, 205

clinical trials and, 151

delivery methods, 119, 134, 140

drug treatments and, 119, 121, 122, 134, 140, 141, 142–43, 145, 146, 151, 154, 159–60

“go time” and, 133–34

impact on others, 134, 144

insurance coverage and, 136, 140, 144

life challenges and, 134, 143–44

navigation of, xiv, 119–20, 205, 240

new and novel treatments, 134, 137–38, 145–46

physical complications of, 134, 141–42

recovery from, 147–49, 150

relationships and, 181

side effects and, 119, 134, 136, 139, 141–44, 205, 209, 210

specialists and, 20, 28, 29

stem cell transplants and, 121

technological innovation in, 223

therapeutic treatments, 134, 136–37

what to expect, 134, 141–44

what to treat with, 134, 136–39

when to treat, 134, 135

WTDs for, 134–44

US Preventive Services Task Force (USPSTF), 213–14, 215

vaccines, 146, 222, 224, 225, 228, 230, 233, 234

watch-and-wait approach, 26–27, 40, 42, 48, 79–80, 119, 120, 135

what matters (Step 3)

establishing North Star, 50, 51, 54–55, 56, 62

expressing needs and wants, 47, 51, 53–54, 56, 246–47

listing needs and wants, 41–47, 50, 51–53, 55–56

as personal reset, 42, 50, 55–56, 239

WTDs for, 51–55

WTDs (what to do)

for action plan, 59, 63–69

for apologies, 256–58

for caregiving team, 195–201

for clinical trials, 158–63

diagnosis and, 8–9, 13, 14–15

for integration of care, 87, 91–93

lists of, xi, xiv

for medical team, 86, 87–89

for patient portal, 9, 14–15

for personal team, 86, 87, 90–91

for prevention, 228–33

for resets, 178–82, 256–58

for screenings, 212–17

for specialists, 30–37

for teams, 86–93

for tests, 107–14

for treatments, 134–44

for what matters, 51–55