The Biden administration has released a proposal to raise standards in nursing homes. Why one expert calls it the most significant development for the industry in decades -- and why it might still not be enough.
Six years ago writer Mary Elizabeth Williams received a diagnosis of malignant melanoma. As the cancer spread through her body, she faced a grim prognosis. With little to lose, Williams seized the chance to take part in an early clinical trial for immunotherapy. Unlike chemotherapy and radiation, which directly target the cancer, immunotherapy helps the immune system fight the disease. Her treatment completely eliminated the melanoma in her body. In a new book, Williams offers an intimate view into this chapter of her life and how she became a breakthrough case for the revolutionary field of immunotherapy.
- Mary Elizabeth Williams Author of "A Series Of Catastrophes And Miracles: A True Story Of Love, Science, And Cancer"; staff writer, Salon
Read A Featured Excerpt
Excerpted from A Series of Catastrophes and Miracles, Copyright © 2016 Mary Elizabeth Williams, published by National Geographic Partners, LLC. on April 26, 2016.
MS. DIANE REHMThanks for joining us. I'm Diane Rehm. At age 44, writer Mary Elizabeth Williams notices a bump the size of a pencil eraser on her scalp. When she finally went to the dermatologist, the response was not what she had expected. Malignant melanoma, a cancer that kills about 10,000 annually. This began an unexpected chapter of her life filled with doctor's appointments, agonizing uncertainty and a revolutionary cancer treatment that would ultimately save her life.
MS. DIANE REHMShe's written about her experience in a new book. It's titled "A Series of Catastrophes and Miracles." Mary Elizabeth Williams joins me in the studio. As always, you are invited to be part of the program. Give us a call at 800-433-8850. Send your email to firstname.lastname@example.org. Follow us on Facebook or Twitter. Mary Elizabeth, I'm so glad to see you.
MS. MARY ELIZABETH WILLIAMSI am so glad to see you, too. I'm so happy to be here. Hi.
REHMThank you. Hi. Tell me how you are.
WILLIAMSI'm very well. I'm fine. I have been cancer free for four years.
WILLIAMSAnd aside from the pleasures of the normal stuff that comes along with getting to be four years older and having to up my eyeglasses prescriptions, I'm doing really well.
REHMDo you prefer to be called Mary Elizabeth or Mary?
WILLIAMSI prefer Mary Elizabeth, but you can call me whatever you want.
REHMI shall call you Mary Elizabeth. Take us back to the beginning when you first had some questions.
WILLIAMSI didn't have the right questions, it turned out. I never, in a million years, imagined that I had cancer. I never guessed that I had malignant melanoma. I had a little scab on the top of my head that I noticed when I was washing my hair and I really didn't think anything of it. Maybe if it had been somewhere more visible, I would've been more concerned, but I wasn't. And I thought, oh, it's just, I don't know, something -- maybe it's a bug bite or maybe it's an allergy.
WILLIAMSAnd I went to my dermatologist and she said, that looks like skin cancer. And even then, I said, okay, well, then get rid of it.
WILLIAMSJust zap it off.
WILLIAMSAnd it turned out it wasn't that simple and she did a biopsy and then, a few days later, I was sitting at my desk writing and my phone rang and she said, I'm very sorry, but it's malignant and I've made an appointment for you at Sloan Kettering Memorial Hospital tomorrow.
REHMWow. And your reaction and that of your family had to have been, oh, my god.
WILLIAMSRight, of course. You're just suddenly catapulted onto another planet, you know. That's kind of how I think a lot of these things happen in our lives, whether it's a disease or whether it's an accident or whether it's just a very sudden and shocking event in your life. You suddenly go from one moment being one person to the next. You have a completely different life and that was certainly the case with me. I was fast-tracked for surgery.
WILLIAMSI had to get a very, you know, a very quick kind of education in what it means to be someone who has a malignant diagnosis. I had surgery. I spent several months recovering from surgery.
REHMWhat kind of surgery?
WILLIAMSI had a five centimeter circle taken off the top of my head. So I have a big bald spot on the top of my head. I have male pattern baldness, but a lady form and because of that, I also had to have a skin transplant and I also had to have a surgical biopsy on my lymph nodes and I went through all of that and felt like I was doing okay. A year later, it seemed like I had rounded that particular corner and then I was rediagnosed.
WILLIAMSAnd this time, I was rediagnosed with metastatic cancer and I had cancer in my -- my melanoma had moved into my lung and I had to have surgical biopsy on my lung and then, two weeks after that, I developed a new tumor. So things were moving very quickly.
WILLIAMSYeah. It was bad. It was bad.
REHMYou know, I think some people faced with that kind of armor coming at you would think, wow. What can I do? I'm finished. I'll give up.
WILLIAMSI don't know. I don't know. I don't think that's a -- I don't think that that is the human response. I think what makes us human is we go, okay, what am I going to do about this now? What's the next thing in front of me?
REHMAnd what did the doctor say at that point?
WILLIAMSWell, I was extraordinarily fortunate because I was a patient at a hospital that was innovating a very new form of cancer treatment and doing research trials on this new kind of approach to cancer and my oncologist at Memorial Sloan Kettering said, there is a clinical trial starting up and I think you would be very good for it and I want you to meet with our immunotherapeutics team. And I...
REHMHad you ever heard of immunotherapy?
WILLIAMSA little, yes, only because I had already been spending the past year with my melanoma on my radar. And a few months before I was rediagnosed at stage 4, the first new treatment for melanoma in decades was approved by the FDA and it was form of immunotherapy. And so I was paying attention to these kinds of things and so when my oncologist said we want to get you in this clinical trial, I had some familiarity with what that meant, but not very much.
WILLIAMSAnd, again, got up to speed very quickly and got an education in what makes immunotherapy different from conventional forms of cancer treatment, particularly for cancers like mine, which is typically chemo resistant.
REHMAnd we should say right here that immunotherapy does not affect all cancers.
WILLIAMSNot right now.
WILLIAMSNot yet. That's how I want to look at it.
WILLIAMSRight. So a lot of the -- and we can also talk a little bit about what it is and what makes it different.
WILLIAMSSo the way that immunotherapy works, unlike chemo, radiation or surgery, is it is a systemic kind of approach to cancer. And the hope is that what cancer typically does is it confuses your immune system, your T-cells, which are your army within your body that fights off invaders, fights off infection, fights off disease, typically does not recognize cancer cells. But with immunotherapy, the immune system is retrained in much the same way that our immune systems are now trained with vaccines and with other forms of treatment to say, okay, so once you get this shot, you don't have to worry about polio anymore because now your immune system knows what to do with it.
WILLIAMSSo what if you got a treatment that would help your immune system recognized melanoma? And then, you don't have to worry about melanoma. So that's what happened with me. I was on these two different kinds of drugs and basically, it worked and it worked very quickly. I started -- I could see the tumor -- I had a tumor on my back that I could see shrinking within days. I was cancer free at three months. I've been cancer free for four years.
WILLIAMSAnd the way that it works is my immune system, my T-cells recognized my cancer and destroyed it. And that hope now is that this kind of knowledge and science can be applied to other forms of cancer. And it already is. Immunotherapy treatments have already been approved for non small cell lung cancer, for renal cancer, for bladder cancer, I believe, and there are other kinds of treatments in the works. But that's the hope.
REHMNow, did you have one cancer that was showing up in all these different places...
REHM...or were different kinds of cancers sprouting?
WILLIAMSIt was melanoma. And that's the thing that happens. That's what makes cancer metastatic. That's one of the things that puts you at stage 4. And if you're unfamiliar with cancer staging, there are four stages. There is no 5. So if you get to 4, that's...
REHMIt's pretty serious.
WILLIAMSIt as serious as it can possibly get.
REHMHow did your family react?
WILLIAMSThat's a great -- well, you know, the great thing, I have two daughters who were 6 and 10 when I was diagnosed and the great thing about children is they take you out of your own stuff and they take you out of your own fears a lot of the time. And I think they were a great reality check for me because there are days when you just want to be scared that you're going to die, but instead, you have to, you know, bake some brownies for a bake sale so you do that. And it keeps you very much in perspective.
REHMHow did the immunotherapy make you feel?
WILLIAMSI'm glad you asked because one of the other amazing things about immunotherapy, when it works, and it does not work for everyone and it does not work for every form of cancer, but it is so different from what our expectations are of cancer treatment. I did get a rash. I did have fatigue. I did have my sense of taste was altered a little bit. And some people have more serious side effects. Some people get colitis. But here's what doesn't happen if you are on a successful course of immunotherapy.
WILLIAMSYou don't lose weight. You don't throw up. You don't lose your hair and you have, among the privileges of being well, looking like yourself.
REHMThe book is titled "A Series Of Catastrophes and Miracles." Mary Elizabeth Williams, she's here in the studio. After a short break, we'll talk more, take your calls. Stay with us.
REHMWelcome back. Mary Elizabeth Williams is with me. She is a writer and has written for The New York Times. One of her columns appeared in Modern Love, a column I read every single Sunday.
REHMSo I happen to have read that one. And her new book about her metastatic melanoma and how she underwent immunotherapy and came out strong. It is titled "A Series Of Catastrophes And Miracles." There is a beautiful butterfly on the front cover. One side of that butterfly, two wings are very pale, the other side filled with dots and lines. Tell me the symbolism you wanted to use…
WILLIAMSIsn't that beautiful?
WILLIAMSI love my art team at National Geographic Books. I love that image. I love the -- to me, it's just the best visualization of the story I could have ever not imagined. Because, to me, it's an image of something that is changed and transformed and different and a little broken, but beautiful in a completely unique and new way.
WILLIAMSAnd that's how I feel these kinds of experiences can make us. Changed but whole.
REHMWhen I asked you about your family, you talked about your children and how their joy and their real lives kept you going.
REHMWhat about your husband?
WILLIAMSWell, it was a kind of a unique timing because my spouse and I had been separated for two years. We broke up. And we had just been moving in the direction of reconciliation. And then -- first, his dad actually was diagnosed with late-stage cancer. And then four weeks later I was diagnosed with melanoma. So it became a very -- it was not the blissful, romantic, peaceful period we had imagined that reconciliation being. But what happened along the way was I think we both got to see different sides of each other. And he became the person who cleaned my wounds and tended to me. And he was the person who, when I was re-diagnosed, had to be by my side when I woke up from my exploratory surgery.
WILLIAMSAnd, you know, a lot changed. A lot of good things came out of it. Obviously not what I would ever choose in life to experience. And I think, when you go through something very serious, you become closer in different ways. But you also become distant in different ways. You know, I'm the one who got sick. And I will always be the one in the family who was sick. And he will always be the one in the family who was the caretaker.
REHMWill you read that modern love comment?
WILLIAMSI will, if I can put on my glasses. (laugh)
REHMOf course you can.
WILLIAMSSo this is from my "Modern Love" that came out two years ago.
WILLIAMS"Nobody writes songs about sitting on the edge of the tub while a man applies topical antibiotics to your oozing skin graft. There are no poetic odes to women with gaping scars, no sonnets to men who may be wearing the same shirt for the third day in a row. But maybe there should be. Because everything I thought I knew about love at 24 seems pretty absurd now. I didn't know, then, that a wonderful relationship would one day become unsustainable. I couldn't have imagined that later on, strangely enough, it would become a new kind of wonderful.
WILLIAMS"The wedding ring I so optimistically slipped on to my finger long ago, the same one I despondently removed many years later, is now permanently retired. But I wear a small moonstone on my hand, the symbol of hope. Hope for healing in all its forms. Neither of us sees the world in guarantees anymore. We recognize them as the comforting fictions they are. We accept that you can't always keep the promises you made when you were barely above drinking age. You can't know how you will change, or what life with throw at you.
WILLIAMS"Having our marriage fall apart and having disease come in and try very hard to kill me did away with our cozy assumptions that the future looks just like the past, but with more laugh lines. But he and I have learned, because we have had to, the difference between the illusion of security and the liberating joy of the present, between obligation and choice."
REHMHis father's sickness truly entered into that whole experience.
WILLIAMSAbsolutely. It was -- our diagnoses were very close together. And then my best friend was diagnosed with ovarian cancer three months to the day after I was diagnosed. So suddenly we went from a family who had very little of experience with cancer to one that had a lot of experience with cancer. And in the last few months of my father-in-law's life, I think we developed a really intimate and close bond. Because, again, it's like, when you're in that club, you know, you just speak a certain language to each other that I think nobody else in the world understands. You know, you get -- you've got a shorthand with other people who are going through the same thing.
WILLIAMSAnd that's what I hope to have now with other people who are going through cancer. You know, I can talk to somebody right away and, You've got cancer? Let's talk.
REHMYour best friend Donna had ovarian cancer, one that unfortunately is not yet treated successfully by immunotherapy.
WILLIAMSNo. But one of the doctors who was a fellow on my clinical trial, that is now what she is doing research in and that's what she...
REHMI'm so glad.
WILLIAMSYeah. That is what she's leading clinical trials in. And it feels -- it's very personal to me and it's very moving to me that someone who treated me is now treating women with ovarian cancer.
REHMYou dedicated your book to Donna.
WILLIAMSYeah. Yes, Debbie.
REHMSorry, I didn't -- Debbie.
WILLIAMSNo. No problem. I just love her and I want her name to be shouted from the rooftops. Yes. I wrote this "Modern Love" and I wound up getting a book deal and starting to write this book. And it just kind of coincided with the news that Debbie's cancer was here to stay and was not going to get better. And I wound up writing this book in the last six months of her life. And she was incredible and super generous and collaborated with me and gave me access to her personal information and let me interview her and was just amazing -- an amazing force.
WILLIAMSAnd I feel one of the most important things I wanted to do with this book was to tell her story and to tell a story of a cancer that did not have a happy ending. And to make it clear that we all have different outcomes. And that that's not necessarily personal success or personal failure, it's just the progress of disease. It takes different paths.
REHMAnd the progress of science...
REHM...takes longer in some ways than others. You kept notes, very careful notes of your own disease progression.
WILLIAMSWell, sure. That's what a journalist wants to do. And it was also, I mean, it was also really interesting to me because I was in this innovative clinical trial. I was one of the first 12 people on this form of treatment that is now approved by the FDA. And that feels super exciting. And I knew at the time that this was important. And I didn't know whether I was going to live or not but I knew I wanted -- I wanted to be documenting it and I wanted to be writing about it and I wanted to be talking about it. And also, sometimes, in a very out-of-control situation, to just do what you do best -- and in my case that's write stuff down -- feel like gaining back a measure of agency.
REHMI agree with that totally. The drugs that are used, talk about them.
WILLIAMSYeah. So there are different forms of immunotherapy and I was not qualified for the kind of treatment that President Jimmy Carter actually wound up having such success with just last year because I have a different kind of genetic pattern. So what I was on was on two different kinds of -- two different drugs that basically do the same thing. They're called checkpoint inhibitors because your immune system is a series of checks and balances. And what you want to do is take the braking system off your T cells...
WILLIAMS...so that then they do what they're supposed to do and that they are not inhibited from fighting your cancer.
REHMWhy are they inhibited in the first place? That's what I don't get.
WILLIAMSBecause cancer is really smart. Cancer cells are really, really, really smart.
REHMAnd they shut down the ability of those T cells to...
WILLIAMSTo recognize, yes. Exactly. And that's how -- and that's why cancer is so insidious. And that's why treating it with conventional methods, which by the way have saved many lives...
WILLIAMS...could not be happier for every single person who is in the world because of those conventional treatments. But the challenge with them is of recurrence, because it's not getting at the cancer on a cellular level. And the hope with immunotherapy is that it is. What happens with surgery, chemo, radiation, is, you know, you kind of do shock and awe on the body and hope that you've gotten the area of the most threat. But it's not always the case and it doesn't always work out and it certainly didn't with me the first time around. And now I feel like I'm not going to get melanoma again. I really believe it.
REHMSo interesting. Because early on in the book, you receive the good news. You were in one of your therapy sessions -- group therapy, and you had to excuse yourself to take a phone call. You didn't know quite what that phone call was going to contain.
WILLIAMSI really didn't. I mean, that's -- yeah, if you read the book -- and I hope you all do -- you know, if you do, the first line is, spoiler, I lived. So you know it's going to have -- you know what the outcome, at least for me, is. But I begin the book at Gilda's Club, which is one of my favorite places in the world and one of my favorite organizations because it's a...
WILLIAMSNamed after the beautiful Gilda Radnor, who died in 1989 of ovarian cancer. And it's an incredible support community not just for people with cancer but for their children and their caregivers. And it was the day of my first set of scans after joining the trial. And I was hopeful but cautious, because when you have metastatic melanoma and you know what the outcomes typically are for people with what I had -- which is a few more months of life -- you know, you just don't know what's going to happen.
REHMSo how long had it been since you'd had the treatment before you got that phone call?
WILLIAMSI had been in my clinical trial for 12 weeks.
REHMAnd this was the first...
WILLIAMSSo this was my first set of scans. This was going to be the first time to really see what was going on under the hood. I had a tumor on my back that I had seen receding and I didn't have any new tumors popping up under my skin, so that was good but not definitive, not decisive. And I was literally just sitting down with my group and my phone rang. And it was my doctor, Jedd Wolchok, of Memorial Sloan Kettering. And he said, I don't want to keep you in suspense. I have your results. And it's good news. You're cancer free. And I said, what does that mean?
REHMOf course. Of course.
WILLIAMSSo it was extremely, extremely surreal. Yeah. And then when I went downstairs later to tell my children, I thought I would be so happy and I'd come down smiling and instead I looked at them and I just burst into tears.
WILLIAMSAnd they said, what's wrong. And I went, it's okay, it's okay.
REHMYeah. Totally understandable.
WILLIAMSYeah. A lot of feelings. Many, many feelings.
REHMExactly. And we have a number of callers. So I'm going to open the phones. First to Herbie in Sarasota, Fla. Hi, you're on the air.
HERBIEThank you, Diane. And, Mary Elizabeth, I have a very similar story to yours. I had melanoma diagnosed four-and-a-half years ago on my right knee with spreads. And I had surgery. And then I had radiation to some of these spreads. But I had three spreads in my abdomen and I was fortunate enough to -- when that immunotherapy drug got approved. And I'm wondering whether we had the same drug. It -- was it YERVOY or ipilimubab?
WILLIAMSYep. Yeah, I was on...
WILLIAMS...I was on the YERVOY in combination with Opdivo.
HERBIEOkay. I had YERVOY and I am cancer free also. I get scanned every six months. And I'd also like your listeners to know that please go to the dermatologist and get your skin checked.
REHMAnd you're listening to "The Diane Rehm Show." Herbie, I'm so glad about your results. And I'm sure you are too.
WILLIAMSI'm thrilled for you.
REHMAnd let's go to Peninsula, Ohio. Lynn, you're on the air.
LYNNHello, Diane. I listen to your show all the time and I'm very honored to be able to talk.
LYNNMary Elizabeth, thank you so much. I turned on in the middle of this but so much of what you said struck home with me that I was moved to call. There are two similarities in our story. You talked about being separated from your husband when you were diagnosed. My husband and I were not only separated but we were actually divorced when he was diagnosed with Stage IV brain cancer.
WILLIAMSOh, my goodness.
LYNNAnd his prognosis was not good. It was 18 months to two years. So I took early retirement and looked after him. We were very fortunate that we lived close to the Cleveland Clinic and they have an excellent brain cancer facility, the Taussig Cancer Center and, within that, they have a Brain Tumor Institute. So he received very, very good care there. And for quite a while, he was stable. He had surgery to remove as much of the tumor as they could and the standard chemo and radiation but combined with an immunotherapy clinical trial.
LYNNHowever, it did return. And we were fortunate to be able to travel, first, to the National Institute of Health for another clinical trial and then later to the -- to Duke, to their Preston Robert Tisch Brain Tumor Center. All in all, the prognosis turned out to be -- we survived longer than the prognosis. He had lived five years before he finally passed.
WILLIAMSOh, I see.
LYNNBut I'm very interested and still follow all the developments on immunotherapy. Lately I've been reading that they are trying a new treatment for brain cancer using a modified polio virus.
WILLIAMSYeah. There's a lot -- yeah, that's one of the things that's coming down the road. I -- first of all, I just want to send my condolences to you and tell you how grateful I am to hear your story.
REHMIndeed. Thanks for calling, Lynn. And we'll take a short break here. We've got lots of emails, phone calls to get to, which we will do after a short break.
REHMAnd welcome back. Mary Elizabeth Williams is my wonderful guest, talking about her own encounter with metastatic melanoma and the book that she has written titled "A Series of Catastrophes and Miracles." She kept notes as she encountered his disease, went through immunotherapy, which one of our callers, Mary Elizabeth, has asked that you describe the process of immunotherapy in more detail, what the delivery system by mouth, by injection, and how long in a hospital.
WILLIAMSSure. I'm always happy when people want to know. So there are different forms of immunotherapy. There are all different kinds of treatments that are approved and many, many more that are in clinical trial right now. The kind that I had was a combination of two checkpoint inhibitors so what I did was I would go into the hospital and I would sit in a chemo suite like a regular patient getting a more conventional treatment and I would have infusions.
WILLIAMSAnd the infusions would last several hours and I would be at the hospital, basically, all day, sequentially. Yeah. So in my arm, exactly. And because I was a patient in a clinical trial, there was a lot of other stuff around that as well. I also had a lot of blood drawn and I had a lot of other parts of it that are now not part of, necessarily, the approved course of treatment. Typically, for the kind of treatment that I had that is now approved -- I was just talking to a young woman last week who was doing my combination.
WILLIAMSYou would get four treatments, four of those kinds of days, three weeks apart.
REHMLasting how long each treatment?
WILLIAMSYeah, a couple hours. You know, you make a day of it. You bring in your Jamba Juice and you sit down and you take a few sips and you make yourself comfortable and maybe watch a movie or read a book, much as you might for a typical chemo treatment. The difference is that then you don't have the side effects or the feeling that you would have after chemo. So that's what I did.
WILLIAMSYeah. Oh, no. No, no. No nausea.
WILLIAMSNo hair loss, no weight loss, no nothing like that. So it was very much like I would go in. I would get an IV. I would wait till the bag drained. Then, they'd bring in another bag and that would drain and that would be my system. But other people, other kinds of immunotherapeutics have a different, you know, are different, but that's a very typical way that it would go for a lot of people.
REHMIsn't it miraculous that we can talk about not only the treatment in detail, but the cancer itself in ways that even 20, 30 years ago, we would just not talk about.
WILLIAMSIt's staggering to me. And it's staggering to me that this is a story that begins in the 19th century with a doctor named Dr. William Coley, who had a friend who died, had a young friend who died of cancer, and he really got into exploring the way that the immune system could be tapped to treat cancer in the same way that, you know, we use the immune system to treat other kinds of diseases or to prevent other kinds of diseases. But it just...
REHMBut how to find the right...
WILLIAMSThat needle? Yeah.
REHM...exact combination of chemicals to spur your T-cells?
WILLIAMSExactly. To figure out what the way -- what the protocol is for goosing the immune system, for tapping into that unbelievable, seemingly limitless potential has just been the work of decades and decades and decades of research and innovation. And, you know, I'm always just so terribly moved when I think about all of the doctors and researchers for decades who were doing this, laboring on the fringes of medical science, who were not taken seriously, who were disregarded, but who kept persisting at it anyway.
REHMAnd what I worry about are the cuts in funding to the National Institutes of Health where lots of that research goes on and ultimately cures people like you.
WILLIAMSYeah, I'm very concerned about it. I'm very grateful to Sean Parker and to the Parker Institute for their work in immunotherapy and their incredibly generous innovation and what they're doing because they really believe in the science and they really believe that this is a tipping point moment. I'm really excited with what Vice President Joe Biden is going to be doing over the next few years. I'm extremely hopeful for the kind of work that he's going to be leading with the cancer moon shot.
WILLIAMSBut what we want and what I hope very much is for doctors to spend more time and researchers spend more time researching and spend more time working with patients than they have to for writing grant applications. That is my deep hope and that doctors and researchers and drug companies can work together collaboratively instead of competitively.
REHMIndeed. All right. Let's go to a question about costs and current insurance coverage. "Where are we now," asks Alan.
WILLIAMSI'm glad Alan asked. I am not a person who works on that side. I don't work for any cancer industries or pharmaceutical industries or any cancer organizations whatsoever so I speak purely as a patient and a person who feels extremely lucky to have medical insurance. I was in a drug trial so my treatment was covered by the pharmaceutical company that was innovating the drugs. I mean, my regular other forms of treatment and my regular follow-up were all covered under my medical insurance.
WILLIAMSLast year, several leading cancer doctors across the country signed a letter asking for this country to really look at the expenditures for cancer treatments and look at the high, high cost of cancer treatment. One of the things that happened to me while I was in treatment was a friend of mine who was an artist got leukemia, was diagnosed with leukemia. He didn't have insurance. He crowdfunded his way through it and he was gone six months later.
WILLIAMSAnd that, to me, just seems an unconscionable thing. And the fact that cancer treatment costs so much, innovative cancer treatment costs so much, something has to change.
REHMAnd Teresa asks, are you still taking drugs?
WILLIAMSI am not. I was in my clinical trial for two years, which is because I was their lab rat. I was their subject. So that was the protocol for me. That is not a typical protocol for people who are on an approved course of immunotherapy now. And now, I don't take any drugs. I do regular follow-up scans and that's it.
REHMAnd one particular drug asks, please tell us the Clark level of the initial tumor and its significance in your case.
WILLIAMSOh, my god. Okay. Wait, I have to -- can I tell you later? 'Cause I have to look it up in my book.
WILLIAMSBut I had a very -- I want to say it was a Clark level 5 with deep ulceration. It was bad. My first one was bad. My first one, my doctor assumed that there might be recurrence because it had progressed so far. Yeah. How's that?
REHMWhoa. I think that's pretty good, Mary Elizabeth.
WILLIAMSI'll fact-check my book later.
REHMOkay. And let's go to Lori in Ferguson, Missouri. You're on the air.
LORIHi. I had actually just read about you and one week later, got diagnosed with melanoma.
WILLIAMSOh, my god.
LORIAnd my complication is that I have MS and so my MS has been controlled for five years with the medicine that completely recesses my T-cells. I have none or very little. And I think I did not realize how much immuno-suppression made you a higher risk for skin cancer.
LORISo that's one issue. And then, treatment for MS, at this point, and a lot of autoimmune diseases is to suppress the immune system and the treatment for melanoma, which -- that is what I found interesting when I read your article was about making it be a super fighter. So to mine, hopefully, we're going to, you know, just hope it is contained. I'm having surgery next week, but it is very interesting to deal with the combination between the diseases. So I have been off my MS medicine for two weeks.
LORIIn two more weeks, it should be fully out of my system so my white cells should be back and then, I'll go on an interferon, which I think is less, you know, it's less of a problem than melanoma. But I do feel not just threatened by the skin cancer, but threatened by these two models, you know, these two models of how you deal with the disease are completely in contrast with each other.
LORIAnd so if I have to go to oncology, it's going to get really complicated. It's going to get really complicated if I go there. But that's just kind of ended up as a risk factor for people. You know, there's lots and lots of diseases that they're successfully treating now with autoimmune treatments, but then that becomes complicated.
WILLIAMSExactly. First of all, I am so sorry. That is a lot to deal with.
REHMOh, I should say.
WILLIAMSAnd I assume you have had -- 'cause you seem like a very smart, well-education person, that you've have very serious conversations with your doctor about interferon and about what some of the risks of that are as well in terms of the way that it's going to -- it can make you feel and the risk for other things, including depression. So my hope for you is, yeah, that this totally works. And I don't see why it wouldn't, but it's a very, very important part and I know so many people who have had secondary diseases and secondary conditions that are very, very serious because they were trying to treat the first disease.
WILLIAMSAnd that is, you know, you kind of -- when you're throwing everything against the wall and you want to deal with the main problem, of course, you're not thinking about the problem that might come down the road a few years later, but I really -- I'm so grateful that you called because you raise such an important issue about medical care and about how people like us need to be very well informed and we need to make sure that all of our medical teams are working in great communication with each other so that we understand the full picture.
WILLIAMSAnd I'm very hopeful for you. I really am. And I'm so glad that you called.
REHMHere's a tweet from John. "When Mary Elizabeth was young, did she get a lot of sun or tanning beds? And also, how often does she have to get a checkup?"
WILLIAMSYeah, I'm glad you asked. The answer to that is I did not get a lot of sun and I never tanned. I am a very, very fair-skinned person and if I made any errors in judgment along the way it was that I really did not consider how great a risk the top of one's head is. And what a common and very serious site that is for melanoma. That was it. I didn't tan. I didn't hang out at the beach. I...
REHMBut you didn't wear hats.
WILLIAMSI wasn't much of a hat wearer.
WILLIAMSThat was my main thing. And it turned out that that was where the cancer penetrated.
WILLIAMSAnd that was where I got it.
REHMHere is a website comment from Carla. She thanks us for highlighting your book and immunotherapy. She goes on to say "it did not cure my husband's melanoma, but it bought him time. He went from a prognosis of four months to living fairly normally for four years. There are a few types of approved immunotherapies. We found success switching between the different medications when one would stop working." And she ends by saying, "those four years were priceless." And of course, totally understandable.
WILLIAMSAbsolutely. Absolutely. You know, when I talk to doctors and I talk to researchers, you know, this isn't a story about cells on a slide. This isn't a story -- I mean, yeah, there is the medical fascination with what's going on in research, but what it's really about is exactly what this woman so beautifully articulated. It's about time with people you love.
REHMAnd you're listening to "The Diane Rehm Show." Let's go now to -- I think we've got some interesting news from Roger in Columbus, Ohio. Hi, there. I gather you work for Bristol-Myers Squibb, Roger. Tell us about what's going on there.
ROGERHello. And thanks for the program. Certainly something near and dear to my heart and the organization that I work for. I do get involved with helping to open up additional physician (word?) physician practice sites to be participating in our clinical trials, which you talked about earlier in the show and we are continuing to explore, as you may have referenced earlier, additional tumor types. I think you've been focusing, of course on melanoma, but we've also expanded into a couple of different histologies for lung cancer, renal cell carcinoma as well in the kidney and are looking at, again, other tumor types.
WILLIAMSThose are the approved ones, yeah.
ROGERSo I think -- exactly. I think there's a tremendous opportunity to have a positive impact on people's ability to fight this disease.
ROGERThe only other point -- I'm sorry, go ahead.
REHMYou go ahead. I'm sorry.
ROGERI was just going to say, the only other point I would make here is, I think, oftentimes, our industry is, you know, comes under heavy criticism when it comes to the costs.
ROGERBut for an organization like ours that's been involved in this research for more than 12 years and has spent billions, with a B, to get us to where we are today, to bring this kind of innovation to the market so that patients can benefit from this, it's not taxpayer supported and it doesn't come at an inexpensive cost. It is very expensive to do these trials and to provide medication for free to be in these trials. Most of that research and development money comes from sales of our other medications.
ROGERSo it's -- I think it's something we need to keep in mind when we think about the research and the innovation these products bring. It has to be paid for and oftentimes that's born by sales of our medications.
REHMAnd unfortunately, oftentimes, it is born by the patients and many times, patients can simply not afford it.
WILLIAMSAbsolutely. And that has -- I'm not going to debate about profits that drug companies are -- I mean, it is a profit-driven industry however.
WILLIAMSAnd the other aspect of that is certainly our health insurance system in this country. I think -- but I do think things do need to change. I think there needs to be serious reform.
WILLIAMSI think when, you know, when you hear about drugs hitting the market that are a quarter of a million dollars for a course of treatment, how is that sustainable for anyone who doesn't have really great health insurance.
WILLIAMSWhat happens to the person who is not fortunate to have insurance, who is not fortunate to be in a drug trial? And I'm not one to fix it or change it, but I do think that has to be addressed. That has to be part of the story. That has to be part of the conversation.
REHMSo in some ways, totally understandable that it takes a company years...
WILLIAMSTrial and error.
WILLIAMSSo many trials that don't work, absolutely. I get that and respect that.
REHMBut at the same time, by the time it reaches the patient, we've got to find a way to make it affordable for everyone who needs it.
WILLIAMSRight. And you look at, you know, you look at other countries in the world and the reason that these drugs are not being approved, these drugs that work, these treatments that work, is because the cost is too prohibitive.
REHMAll right. Mary Elizabeth Williams, it's been a fascinating discussion.
WILLIAMSIt's a pleasure and an honor. Thank you so much.
REHMI'm so glad you were here. Her new book is titled, "A Series of Catastrophes and Miracles." Mary Elizabeth Williams is the author. Thanks, all, for listening. I'm Diane Rehm.
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