“The Toxins of William B. Coley and the Treatment of Bone and Soft-Tissue Sarcomas,” by Edward F. McCarthy, Iowa Orthopaedic Journal, 2006: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1888599.
Chapter 9: Spring Breakdown
“A Record Year for the Pharmaceutical Lobby in ’07,” by M. Asif Ismail, the Center for Public Integrity, June 24, 2008: www.publicintegrity.org/2008/06/24/5779/record-year-pharmaceutical-lobby-07.
Chapter 10: Spring Breakthrough
“Approval for Drug That Treats Melanoma,” by Andrew Pollack, New York Times, March 25, 2011: www.nytimes.com/2011/03/26/business/26drug.html.
“Cancer Treatment Survivorship Facts and Figures 2012–2013,” American Cancer Society: www.cancer.org/acs/groups/content/@epidemiologysurveillance/documents/document/acspc-033876.pdf.
“FDA Approves Yervoy (Ipilimumab) for the Treatment of Patients With Newly Diagnosed or Previously-Treated Unresectable of Metastatic Melanoma, the Deadliest Form of Skin Cancer,” Bristol-Myers Squibb, March 25, 2011: news.bms.com/press-release/rd-news/fda-approves-yervoy-ipilimumab-treatment-patients-newly-diagnosed-or-previousl.
“Fred Hutchinson Cancer Research Center to Lead Immunotherapy Clinical Trials Network,” Cancer Immunotherapy Trials Network, April 6, 2011: citninfo.org/news/articles/hutchinson-center-immunotherapy-clinical-trials-networ.html.
“Melanoma,” by Rebecca Tung and Alison Vidimos, Cleveland Clinic Center for Continuing Education: www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/dermatology/cutaneous-malignant-melanoma.
“This Scientist Just Might Cure Cancer,” by Todd Ackerman, Houston Chronicle, April 5, 2014: www.houstonchronicle.com/news/health/article/This-scientist-just-might-cure-cancer-5379769.php#/0
Chapter 12: Here It Comes Again
“Cancer Treatment Survivorship Facts and Figures 2012–2013,” American Cancer Society: www.cancer.org/acs/groups/content/@epidemiologysurveillance/documents/document/acspc-033876.pdf.
“Histology and Outcomes of Newly Detected Lung Lesions in Melanoma Patients,” by E. C. Smyth, M. Hsu, K. S. Panageas, and P. B. Chapman, Annals of Oncology, June 28, 2011: annonc.oxfordjournals.org/content/early/2011/08/04/annonc.mdr364.full.
“Lung Metastases,” Medline: www.nlm.nih.gov/medlineplus/ency/article/000097.htm.
“Weddings: Jedd Wolchok and Karen Popkin,” New York Times, October 24, 1993: www.nytimes.com/1993/10/24/style/weddings-jedd-wolchok-and-karen-popkin.html.
“What Are the Survival Rates for Melanoma Skin Cancer, by Stage?,” American Cancer Society: www.cancer.org/cancer/skincancer-melanoma/detailedguide/melanoma-skin-cancer-survival-rates.
Chapter 13: The Storm
“In Good Hands: At the Worst of Times NYU Langone Provides the Best of Care,” NYU Langone Medical Center News & Views, September/October 2011: http://nyulangone.org/files/publication_issues/Sept_Oct_2011_NYU_News_Views.pdf.
“MSKCC Staff Rises to the Challenge of Hurricane Irene,” Memorial Sloan Kettering Cancer Center News, December 2011: www.mskcc.org/sites/www.mskcc.org/files/node/12154/image/december-2011-center-news.pdf.
Chapter 14: Stage 4
“Approval for Drug That Treats Melanoma,” by Andrew Pollack, New York Times, March 25, 2011: www.nytimes.com/2011/03/26/business/26drug.html.
“FDA Approval for Vemurafenib,” National Cancer Institute, August 17, 2011: www.cancer.gov/about-cancer/treatment/drugs/fda-vemurafenib.
“Ipilimumab,” Bristol-Myers Squibb Clinical Study Report for MDX010-20: ctr.bms.com/pdf//CA184-002%20ST%20(MDX010-20).pdf.
“Melanoma,” Cancer Research Institute, May 2015: www.cancerresearch.org/cancer-immunotherapy/impacting-all-cancers/melanoma.
“Study Details Adverse Events in Pivotal Ipilimumab Trial,” by Ben Leach, OncLive, August 16, 2013: www.onclive.com/publications/Oncology-live/2013/July-2013/Study-Details-Adverse-Events-in-Pivotal-Ipilimumab-Trial.
“Targeting Tim-3 and PD-1 Pathways to Reverse T Cell Exhaustion and Restore Anti-Tumor Immunity,” by Kaori Sakuishi, Lionel Apetoh, Jenna M. Sullivan, Bruce R. Blazar, Vijay K. Kuchrool, and Ana C. Anderson, The Journal of Experimental Medicine, September 6, 2010: jem.rupress.org/content/207/10/2187.long.
“Which Drug, and When, for Patients With BRAF-Mutant Melanoma?” by S. Jang and M.B. Atkins, Lancet Oncology, February 2013: www.ncbi.nlm.nih.gov/pubmed/23369684.
Chapter 15: Lab Rat
“Nivolumab Plus Ipilimumab in Advanced Melanoma,” by Jedd D. Wolchok, Harriet Kluger, Margaret K. Callahan, Michael A. Postow, Naiyer A. Rizvi, et al., New England Journal of Medicine, July 11, 2013: www.nejm.org/doi/full/10.1056/NEJMoa1302369.
“Transforming Clinical Research in the United States: Challenges and Opportunities: Workshop Summary,” Institute of Medicine (US) Forum on Drug Discovery, Development, and Translation, National Academies Press (US), 2010: www.ncbi.nlm.nih.gov/books/NBK50895/.
Interlude: How to Make a Drug
“A New Member of the Immunoglobulin Superfamily—CTLA-4,” by J. F. Brunet, F. Denizot, M. F. Luciani, M. Roux-Dosseto, M. Suzan, M. G. Mattei, and P. Golstein, Nature, 1987: www.ncbi.nlm.nih.gov/pubmed/3496540.
“Bristol-Myers Buys Medarex Drugmaker for $2.4 Billion (Update3),” by Tom Randall, Bloomberg, July 23, 2009: www.bloomberg.com/apps/news?pid=newsarchive&sid=aZWoVAXYGSgA.
“Enhancement of Antitumor Immunity by CTLA-4 Blockade,” by Dana R. Leach, Matthew F. Krummel, and James P. Allison, Science, March 22, 1996: www.sciencemag.org/content/271/5256/1734.short.
“Human Antibodies From Transgenic Animals,” by Nils Lonberg, Nature Biotechnology, September 7, 2005: www.nature.com/nbt/journal/v23/n9/full/nbt1135.html.
“Monster Mice,” by Stephan Herrera, Forbes, March 8, 1999: www.forbes.com/forbes/1999/0308/6305136a.html.
“The T-Cell Army,” by Jerome Groopman, New Yorker, April 23, 2012: www.newyorker.com/magazine/2012/04/23/the-t-cell-army.
“Transgenic Non-Human Animals Capable of Producing Heterologous Antibodies,” inventors Nils Lonberg and Robert M. Kay, November 10, 1994: www.google.com/patents/CA2161351A1?cl=en.
Chapter 16: The Trial
“Ipilimumab (Yervoy) Prolongs Survival in Advanced Melanoma,” by Chris Fellner, Pharmacy & Therapeutics, September 2011: www.ncbi.nlm.nih.gov/pmc/articles/PMC3462607.
“Nivolumab Plus Ipilimumab in Advanced Melanoma,” by Jedd D. Wolchok et al., The New England Journal of Medicine, July 11, 2013: www.nejm.org/doi/full/10.1056/NEJMoa1302369.
Chapter 22: Truly Remarkable
“My ‘Truly Remarkable’ Cancer Breakthrough,” by Mary Elizabeth Williams, Salon.com, May 17, 2013: www.salon.com/2013/05/17/my_truly_remarkable_cancer_breakthrough.
“Nivolumab Plus Ipilimumab in Advanced Melanoma,” by Jedd D. Wolchok et al., The New England Journal of Medicine, July 11, 2013: www.nejm.org/doi/full/10.1056/NEJMoa1302369.
“ ‘Truly Remarkable’ Response With Combination for Melanoma,” by Nick Mulcahy, Medscape, May 15, 2013: www.medscape.com/viewarticle/804274.
Chapter 23: Where Do We Go From Here?
“Give Patients Unapproved Drugs!” by Mary Elizabeth Williams, Salon.com, September 13, 2013: www.salon.com/2013/09/13/give_patients_unapproved_drugs/.
Chapter 24: The Graduate
“The Biology of Cancer: The Epidemiology of Cancer,” by Wayne W. LaMorte, Boston University School of Public Health: sphweb.bumc.bu.edu/otlt/MPH-Modules/PH/PH709_Cancer/PH709_cancer_print.html.
“Breakthrough of the Year: Cancer Immunology,” by Jennifer Couzin-Frankel, Science, December 20, 2013: www.sciencemag.org/content/342/6165/1432.full.
“Drugs Approved for Breast Cancer,” National Cancer Institute: www.cancer.gov/cancertopics/druginfo/breastcancer.
“Drugs Approved for Lung Cancer,” National Cancer Institute: www.cancer.gov/cancertopics/druginfo/lungcancer.
“How Many Women Get Breast Cancer?” American Cancer Society, September 9, 2014: www.cancer.org/cancer/breastcancer/overviewguide/breast-cancer-overview-key-statistics.
“MD Anderson Researcher Jim Allison Wins Breakthrough Prize for His Innovative Cancer Immunology Research,” MD Anderson News Release, December 13, 2013: www.mdanderson.org/newsroom/news-releases/2013/immunology-research.html.
Chapter 26: Stage 5
“Bristol-Myers Squibb Receives Approval from the U.S. Food and Drug Administration for the Opdivo (nivolumab) + Yervoy (ipilimumab) Regimen in BRAF V600 Wild-Type Unresectable or Metastatic Melanoma,” Bristol-Myers Squibb: http://news.bms.com/press-release/bristol-myers-squibb-receives-approval-us-food-and-drug-administration-opdivo-nivoluma.
“FDA Approves Opdivo for Advanced Melanoma,” FDA News Release, December 22, 2014: www.fda.gov/newsevents/newsroom/pressannouncements/ucm427716.htm.
“FDA Approves Bristol-Myers’s Yervoy, Opdivo for Treatment of Melanoma,” by Peter Loftus and Ron Winslow, Wall Street Journal, October 1, 2015: http://www.wsj.com/articles/fda-approves-bristol-myers-yervoy-opdivo-for-treatment-of-melanoma-1443711746.
“Immunotherapy Combination Nivolumab Plus Ipilimumab Receives FDA Approval for Metastatic Melanoma,” by Christina Pernambuco-Holsten, Memorial Sloan Kettering blog, October 1, 2015: https://www.mskcc.org/blog/immunotherapy-combination-nivolumab-plus-ipilimumab-receives-fda-approval-metastatic-melanoma.
“In Support of a Patient-Driven Initiative and Petition to Lower the High Price of Cancer Drugs,” Mayo Clinic Proceedings: http://www.mayoclinicproceedings.org/article/S0025-6196(15)00430-9/fulltext.
“Ipilimumab/Nivolumab Combination Achieves Long-Term Survival for Patients With Advanced Melanoma,” by Charlotte Bath, The ASCO Post, June 6, 2014: www.ascopost.com/ViewNews.aspx?nid=16293.
“New System for Treating Cancer Seen as Hopeful,” by Andrew Pollack, New York Times, June 2, 2014: www.nytimes.com/2014/06/03/business/cancer-researchers-report-longer-survival-rates-with-immunotherapy.html.
Acknowledgments
It is hard to go through cancer, and it is hard to write about cancer. But if you’re going to do it, it helps to have the best people in the world to guide you through it all. Ludicrous amounts of gratitude to the following:
Thank you to my agent, David Fugate, for taking on an idea and helping turn it into a full-blown proposal.
Thank you to my editor, Hilary Black, for being perpetually smart and encouraging and full of good ideas, and to everybody at National Geographic, in particular Allyson Dickman. I could not ask for a better home for my book than the one it found with you.
Thank you to my incredible and inspiring past and present colleagues from Salon, especially Kerry Lauerman, Dave Daley, Thomas Rogers, and Sarah Hepola, for giving me a place to write about the experience while I was living it, for being so accommodating and flexible throughout my adventures in cancer treatment, and mostly for being my friends. PS: Note how I am using the serial comma here, and YOU CANNOT STOP ME.
Thank you to Dan Jones at the New York Times. I wish I could write a Modern Love every week; you are that great a joy to work with.
Thank you to everybody at Gilda’s Club—staff, volunteers, and mostly, my fellow members—from the bottom of my heart, for giving my family and me so much support.
Thank you to the generous and passionate folks at the Cancer Research Institute, Stand Up to Cancer, and the Melanoma Research Alliance for all the amazing work you do, all the time.
Thank you to the past and present staff of Memorial Sloan Kettering, in particular the team at the Immunotherapy Clinic led by Dr. Jedd Wolchok, for being geniuses and also for being the most compassionate group of caregivers imaginable. To my doctors and nurses: That saving my life thing? Big ups.
Thank you to the friends who offered hospitality and help and humor, to my family and to me. You got us through. This means you, Carole, Carolyn, Cathy, Chez, Debbie, Denise, Fawn, Irene, Jacqui, Jeffrey, Jessica, Jill, Jilly, Joey, John, Jolie, Julie, Kristin, Larry, Laura, Lily, Linda, Mark, Michele, Mike, Rob, Rose, Shannon, Stacey, Steve, Tom, Will, Xeni, and about a hundred other people I adore.
Thanks to my mother-in-law for stepping up, big-time.
Thank you to Jeff. There’s no one else I’d rather have clean my head wounds. I choo choo choose you.
And immeasurable thanks to Lucy and Beatrice, the two kindest, bravest, funniest people I’ve ever known. You are my role models. I love you.
About the Author
Mary Elizabeth Williams is a senior staff writer for award-winning Salon.com. The “Lab Rat” series on her clinical trial immunotherapy treatment was nominated for the 2012 Online Journalism Award for Commentary, and her essay on receiving a melanoma diagnosis is in the Harper anthology The Moment. She is the author of Gimme Shelter: Ugly Houses, Cruddy Neighborhoods, Fast-Talking Brokers, and Toxic Mortgages: My Three Years Searching for the American Dream, a starred Booklist selection. Williams lives in New York City with her family.
Reader Discussion Guide
1. Mary Elizabeth’s late-stage cancer prognosis was grim, and her treatment at the time had only slim odds of working. If you suddenly had to face your own mortality, how do you think you would react? What do you think you would change about your life right now?
2. In the book, Mary Elizabeth observes that “there is good in the sad stuff,” and that grief is “full of extraordinary, luminous beauty too.” Do you agree or disagree with her assessment? Have you ever found positive experiences within very difficult ones? Describe what it was like and how it changed your perception of them.
3. Throughout the narrative, Mary Elizabeth describes speaking openly with her daughters about her health. How do you think parents should talk to their children about serious situations? Have you ever had a crisis in which you had to figure out how much or how little to share with your family? What did you do?
4. Mary Elizabeth and Debbie have different approaches to their illnesses. Mary Elizabeth is open, writing and talking about it and joining a support group, whereas Debbie prefers to keep her status more private and her experience more intimate. Which approach resonates with you? Why?
5. In Chapter 12, Mary Elizabeth talks about how her experience has rearranged many of her friendships. Have you ever been through something that shifted what you thought about the people you knew, either because they pulled away or because they stepped up? How do outside events reveal character?
6. In Chapter 12, Mary Elizabeth talks about her ideas of prayer and grace, musing about how she separates her faith from her belief in science. Do you agree with her—and do you think the two concepts can truly coexist?
7. At the beginning of the book, Mary Elizabeth and Jeff have reconciled after a painful marital separation. Do you believe in second chances? Have you ever faced a tough choice between trying again at something and letting go? What finally tipped the balance?
8. Mary Elizabeth struggles with what she calls her “sick person’s head” while observing the dramatic physical changes that cancer also brings to Debbie, Dad, and Cassandra. How does exterior appearance affect yo
ur state of mind—and wellness? Have you ever had a time when your inner and outer self seemed at odds? How did you reconcile the two?
9. Mary Elizabeth and Debbie repeatedly joke with each other as a shorthand means of coping. What roles does humor play in your life? Are there any situations—as when Mike insists, “That’s not funny,”— when certain topics should be off limits?
10. Have you ever had a personal experience with cancer, either as a patient or with someone close to you? How did it change your understanding of disease and treatment? Has reading this book changed what you know about cancer? What surprised you?
11. Mary Elizabeth talks about the high cost of treatment and contrasts her own medical journey with that of Leo, who has to crowdfund his way through treatment. What do you think are the ethical responsibilities of drug companies, doctors, and researchers, and what can be done about the increasingly high costs of treatment?
12. Julie observes in Chapter 9 that “everybody, at some point, gets sick. Everybody has to go to the doctor.” How do you advocate for yourself when you’re in the role of the patient? What do you wish doctors understood better about the patient experience?
13. Mary Elizabeth says she staunchly rejects the word “battle” when it comes to cancer. She also grapples with words like “survivor” and “the cure.” How do you feel about the words we use to talk about cancer? How does language shape our perspective?
A Series of Catastrophes and Miracles Page 27