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mary elizabeth w: melanoma

What if a phase I clinical trial changed your fate?

"There's no question in my mind that immunotherapy saved my life."

For Mary Elizabeth Williams, a New York-based writer and mother of two, the hardest part of having stage 4 melanoma was imagining what her family would do without her. Her spouse, and her daughters, then age 7 and 11—how would they cope with the loss? 
 
In late 2011, that thought loomed in Mary Elizabeth’s mind as she prepared to begin conventional treatment for what all medical sources told her was a terminal illness. Then, at the last minute, she learned she was eligible for clinical trial of a promising new immunotherapy being conducted by Jedd Wolchok, M.D., Ph.D., at Memorial Sloan Kettering Cancer Center in New York City. The trial was a study of two checkpoint inhibitor drugs, ipilimumab and nivolumab (made by Bristol Myers-Squibb), for patients with metastatic melanoma. Both drugs are antibodies directed at specific “braking” molecules, called checkpoints, on immune cells. By “taking the brakes off” the immune response, the drugs enable a more powerful anti-cancer response.
 
Mary Elizabeth began treatment with the two immunotherapy drugs in November 2011. By January 2012, she knew the treatment was working. The Answer to Cancer (TheA2C) spoke with Mary Elizabeth about her cancer treatment journey.

TheA2C: Tell us how you found out you had cancer.
Mary Elizabeth: In the summer of 2010, I discovered that I had a little scab on the top of my head and I didn’t think much of it for a while. I just assumed it was a scrape or a reaction to my shampoo or something. I went to my dermatologist and she said, “That looks like skin cancer.” Even then I still wasn’t concerned. I thought, well, skin cancer, that’s not so bad. That’s not like real cancer!
 
Then a few days later I was sitting at my desk, getting ready to file a story, and the phone rang. And my doctor said, “I’m very sorry. It’s malignant.” The next day, I went to Sloan Kettering and I met my brand new oncologist.
 
I had surgery. I told my family. I told my friends. I went through it, I went through the recovery. I was told the margins were clean. Everything seemed great. People started calling me a survivor. And then about a year later on a CAT scan there were some spots on my lungs. I went in for some more testing and I had a surgical biopsy and they told me that it was malignant again. The cancer had broken off, it had metastasized into my lungs. And then, two weeks after the surgery, I went back to the doctor and I said, “I have a spot on my back.” And that was malignant as well. That’s when I was told I was stage 4. If you think it looks bad when you find out that cancer’s moved into your lungs, when you find out that you have two distant metastases, the news is very, very bad. It’s very, very grim.
 
TheA2C: Do you remember what you were thinking at that point?
Mary Elizabeth: When I found out I was stage 4, it was a complete shock. I was scared, I was stunned, and I was mad. I had gone through cancer already. I had done everything right. I had been good. I had behaved. And the cancer had come back and it had come back worse. And now it was really gunning for me and for my life.
 
The hardest part was when I thought about my mate and my children and what would happen to them. I would stand in the shower and look out the window of the bathroom and I’d think about them and what was going to happen to them if I wasn’t here. And that became a very real concern and something I really had to start planning for. It was the most traumatic thing that could ever happen, not just to me, but to my family.
 
TheA2C: Did you see yourself as a healthy person who wouldn’t get cancer?
Mary Elizabeth: Cancer changed everything I had ever thought about myself up to that point. I never even really got sick! I’d never been hospitalized. I was a healthy person, I was a healthy weight. I had perfect blood pressure. It was never a problem. I did everything right! I even always wore sunscreen. I was perfect! I was a good girl! What I hadn’t planned on was that the cancer would penetrate through my hair and that it would attack me that way. What I know now is: cancer doesn’t discriminate and it doesn’t go after people who get colds. And it doesn’t go after people who have higher blood pressure. It goes after everybody.
 
TheA2C: What did the doctors tell you your options were when they gave you the stage 4 diagnosis?
Mary Elizabeth: When my doctor told me that it was stage 4, my options dwindled down to a very, very precious few at that point. Melanoma is traditionally very chemo-resistant, so chemo probably wouldn’t have been a great option. Because of the location of the tumor in my lung, surgery would be very risky and we would have to wait until the cancer had progressed to even consider doing an operation.
 
So there wasn’t a whole lot available to me. We were going to try a traditional drug therapy and hope for the best, and then, fortunately not too long after my diagnosis, when I was flipping out about what I was going to do with the rest of my life, whatever that might entail, she called me and said, “There is a spot in a clinical trial and I think you should explore this.”
 
TheA2C: What did you think about the option of going on a clinical trial?
Mary Elizabeth: When my doctor first told me about the option of a clinical trial, I was incredibly skeptical. I didn’t know anything about clinical trials, but I knew I didn’t like the sound of them. I thought it sounded very risky and very scary. I thought, well, they’re not going to give me real drugs. And if they do give me the real drugs, these are drugs that haven’t worked anyway, and so it’s probably not going to work.
 
But I also knew this was really my one chance. So I went in and met with Dr. Wolchok who explained to me what was really going to happen in this trial and what we were going to do together as a team. And that changed everything. Once I had that conversation and I got more information about my particular trial, and about immunotherapy, I started to get hopeful. For the first time.
 
TheA2C: What was that treatment like?
Mary Elizabeth: I started treatment a couple weeks after my diagnosis at stage 4. First, I had to do a lot of testing to get into the trial, they had to do a lot of blood work. When you’re in a trial, they ask something of you in return, which is mostly blood and tissue. And then I started the treatment and it’s a combination of two drugs. So when I go in, it almost looks like traditional chemo in the sense that I go and I sit in the chemo chair and I get the IV and I’m there for several hours. But what was exciting about it was: it wasn’t painful, it wasn’t scary, it didn’t hurt. I signed off on a long list of possible side effects and held my breath and went home and waited to see what was going to happen, and not a whole lot did.
 
But what was really exciting was when I went back one week later. My doctor looked at my tumor and it had started getting smaller.
 
TheA2C: That’s incredible.
Mary Elizabeth: It was incredible. I didn’t want to believe it. Because I had been looking, of course. It’s very scary when you can see your cancer underneath your skin. It’s one of the scariest, most sickening things you can imagine, to see something attacking you underneath your skin. And then I saw it getting smaller. And I thought, maybe it’s just my imagination. Maybe I’m just hopeful. And then Dr. Wolchok said, “You’re the patient who’s seeing improvement after one treatment.”
 
A few weeks later, I was out with a friend in a bar and he said, “Can I see your tumor?” and I lifted up the back of my shirt to try to show it to him and he couldn’t find it. It was really exciting.
 
TheA2C: Were you feeling optimistic about beating cancer at that point?
Mary Elizabeth: When I was going through the treatment in the initial weeks, I was still just holding my breath. I didn’t want to get too hopeful because nothing is certain until you get your scans. You don’t really know. And then three months after I started treatment, I had my first scan and that’s the real make-or-break moment. That’s when you look under the hood and you find out what’s really there. I remember it was a winter day and I was going to see my support group that night. And I went in for my scan and I was a nervous wreck. And then right before I sat down for my support group, my phone rang. And it was Dr. Wolchok and he said, “I have your results.” And he told me that the tumor on my lung had gone completely and that the tumor on my back had completely receded. My life changed that night. And it’s been a new life ever since.
 
TheA2C: Were you worried about side effects?
Mary Elizabeth: When I got my diagnosis, the only thing I wanted was to get through it. I didn’t care what we had to do. If I had to lose my hair and if I had to lose twenty pounds and if you had to cut off my finger, fine. I had already lost the top of my head and part of my thigh and a portion of my lung. Whatever you want, you can have!
 
But what I discovered once I started treatment was what a gift it is to not be sick while you’re going through treatment. What an amazing thing it is to still be able to go about your life, to still be able to function in the professional world, to still be the person your children know. To be the face that they are used to seeing and recognize, and to be the face you recognize in the mirror. It was huge to me. It was bigger than I thought it would be. And even though I would have done anything and gone through anything to get through the cancer, to not have to be sick, to not have to look sick, to not have people look at me like a sick person and treat me like a sick person, right off the bat, was wonderful.
 
TheA2C: How did your experience change your perception of clinical trials?
Mary Elizabeth: I am amazed at what’s going on in clinical trials right now. My trial was a phase 1 trial. People don’t necessarily think that they’re even going to get results at that level of testing and I had a complete response, so it’s incredible. And what’s really incredible is that that’s one trial. And I’m one person. And it’s a fairly small trial. And there are trials going on throughout the country right now and they are putting treatments that are saving lives into people’s hands now.
 
TheA2C: What are your hopes for immunotherapy as a treatment?
Mary Elizabeth: I honestly believe that this is an incredibly exciting time, not just in cancer, but in medicine, because when you think about it, the way that Dr. Wolchok explained it to me, it seemed so simple. We use the body’s defenses all the time. Every time we go for a vaccination, we figure out how to get the body to respond to sickness, how to fend it off. We’re finally at a point now in research where doctors and researchers are figuring out how to use the body’s mechanisms to do what had seemed impossible: to fight cancer. And the exciting thing is, unlike surgery, or chemo, or other treatments, it’s not just about going in, cutting it out, and then crossing your fingers and hoping for the best. This is about getting your body to keep doing that and keep fighting.
 
TheA2C: How do you explain what immunotherapy is?
Mary Elizabeth: When people ask me about cancer and they know that I’ve had cancer, usually the first thing they say is, “Oh, how was chemo?” or “How was radiation?” And when I tell them I didn’t do that, they get a little worried looking, that I didn’t get real cancer treatment. And I tell them: this is going to change everything. I tell them, the treatment that I had—immunotherapy—is going to change everything. I explain to them that this is just targeted therapy that uses your own body’s defenses. And it makes sense, when you think about it. It’s just taken a long time for doctors to figure it out.
 
TheA2C: Do you believe that immunotherapy saved your life?
Mary Elizabeth: There’s no question in my mind that immunotherapy saved my life. I had stage 4, my cancer was galloping through my body at a rapid clip and the trial that I was on stopped it and reversed the course in three months. When I tell people about that, their minds are blown. My mind is still blown by what happened with me.
 
TheA2C: You must get a lot of questions from readers who’ve read about your experience. What kind of advice do you give them?
Mary Elizabeth: I had a friend in my support group say to me, “My doctor said there’s nothing they can do.” And I said to him, “Please make some phone calls and see if you can get yourself in a trial.” And he made some calls and he got into a trial and now his tumors are shrinking. That’s what you get when you talk to people. That’s what you find out.
 
What I tell everyone is: don’t Google “worst case scenarios” because you’re not going to get good news. And be really careful of the information you let yourself get. Be sure that you advocate for yourself and don’t just necessarily take the first bit of information you get from the doctor down at your hospital. Find out what’s out there.
 
TheA2C: What is your hope for the future of cancer treatment?
Mary Elizabeth: What I’m looking forward to is the day that I’m playing with my grandchildren and they ask what it was like back when people got cancer and there wasn’t much you could do about it. And I’m going to tell them that I was part of something that helped change that. That I was there at the beginning of the end of this.
 
 
Mary Elizabeth Williams is a staff writer for Salon.com. She chronicled her cancer journey in series of articles that you can read here. You can also watch a video of Mary Elizabeth here.

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