One Woman's Experience As A Clinical Trial 'Lab Rat'
LYNN NEARY, HOST:
Late last summer, Mary Elizabeth Williams got some devastating news: her cancer had returned. A year after recovering from malignant melanoma on her scalp, it had resurfaced, this time in her lungs and back. News can't get much worse than that, but then Williams learned that the FDA had recently approved clinical trials for first new melanoma drug in decades. She qualified for the trial several months ago and has been writing about her experiences for Salon. Mary Elizabeth Williams joins us in a moment.
But first, if you're running out of options and have considered a clinical trial, tell us about it. Give us a call at 800-989-8255. Mary Elizabeth Williams joins us from our bureau in New York. Good to have you on the program, Mary Elizabeth.
MARY ELIZABETH WILLIAMS: Lovely to be hear.
NEARY: Now, in your first article about this experience called "My Life as a Lab Rat," it was published back in November. And in that article, you described how all this got started. And at that point, you really didn't have very many options, did you?
No. It depends on what kind of cancer you have, but melanoma is a particularly aggressive form of cancer. When it does come back, it tends to come back a lot. And when it does, traditional chemotherapy tends not to work very well on it. Interferon, other therapies don't tend to work. And because it's often spreads into the bloodstream, as it had for me, I didn't have a whole lot of other options. It was very intense, scary time.
All right. So hear about this trial and what did they tell you about it, first of all?
WILLIAMS: Well, what happened first was I was - there a drug approved by the FDA last spring called Ipilimumab that I qualified for. There's also - there are other - another drug had just been approved, but you have to have the right kind of genetic marker for it. So my doctors were going to try and put me on the Ipilimumab, which is, by the way, wildly expensive. And it's - it works - when it works, it works. But when it doesn't work, it doesn't work. And about fewer than half of all cases, it does work.
So what my doctors said to me was, we want to put you on a trial that will combine this drug that has been approved with another drug because they seemed to work very well in tandem. And then they told me that the spot was gone, and then somebody dropped out. And just by kind of a miracle of timing, I got in, and I've been doing this trial now since late October.
NEARY: OK. You know, even given your situation and the fact that this was really - you were out of options, as we said. Did you still have any reservations about getting involved in a clinical trial, really not knowing, you know, what the outcome might be, what the side effects might be?
WILLIAMS: Oh, sure. Oh, absolutely, I had reservations. I was handed a 27-page document that I had to sign off on of all of the possible things that could go wrong. It was very intense and particularly because, you know, you just don't know what else is out there for you. And you don't know what's going to happen once you start on a therapy that's really been untried on humans. But it seems at that time the best option that I had out of not a lot of great options, and I kind of took a deep breath and made a leap of faith.
NEARY: So I gather from the - what you called this article, "My Life as a Lab Rat," that you were feeling a little bit like a lab rat.
(SOUNDBITE OF LAUGHTER)
NEARY: What is like going from being a patient and being treated for an illness to being the subject of a medical experiment?
WILLIAMS: It's different. It's a very different kind of a protocol. As a patient, I had one doctor very early in the treatment who really just kind of treated me like a lab rat, who talked around me, who would bring in some of the fellows from the project and just talk about the tumor while I was in the room as if I was the tumor. But most of the other doctors in the trial have not been that way and have been really wonderful and supportive.
But because - when you signed up for a trial, though, you are not just signing up to get treated. You were signing up to give your blood, to give tissue, to give urine, to basically say, you have a right to experiment on me. This is what you're doing now, and I have to go to Memorial Sloan-Kettering every week for monitoring, but also for blood work because they need to see how my body is responding. I'm a research subject as well as a patient.
NEARY: Yeah, and I want to ask you about that, and I - you tell a story about a doctor, and I'm assuming it's the doctor you just mentioned who - you were trying to say to him, oh, my personal doctor has told me that I can get this tumor removed, and he had a pretty startling reaction. Can you tell us that story?
WILLIAMS: He said we need the tumor. That was how he referred it - to it to me. My doctor had said that the tumor on my back, not the one in my lung, but that I could maybe have one of my tumors removed. And he said, we need it. And if you do it and you proceed with the surgery, you can't participate in this trial. And this is, I think, a very common crisis that a lot of us who are kind of at the end of our ropes, cancer-wise speaking, who are Stage 3 or like me, a Stage 4, are facing. You have to make this choice, that if you agree to participate and you agree that you want to proceed with the protocol, you have to then refuse other kinds of treatment, and you cannot do other kinds of treatment.
You also can't do other kinds of therapies. I can't get acupuncture. I can't get a flu shot. You know, these are very serious things you have to think about if you want to make this kind of leap.
NEARY: But you were able to get that tumor removed, right?
WILLIAMS: No. No.
NEARY: Oh, you weren't.
WILLIAMS: I did not have it surgically removed, but I started the treatment. And I was very, very lucky that after just one treatment on this new protocol, we could see that the tumor was diminishing.
NEARY: All right. We are talking with Mary Elizabeth Williams. She's a staff writer for Salon.com. We're talking with her about her experience participating in a clinical trial for a new cancer treatment. And we're going to take a call now from Bob. And he's calling from Salisbury, North Carolina. Hi, Bob.
BOB: Hey. How are you doing?
NEARY: I'm good. Go ahead.
BOB: Well, my wife has stage four colon cancer. And we were - I guess, about a year and a half ago, she was diagnosed, and at that time it had spread to the point that it's already metastasized to her liver and they didn't give her, you know, much chance. Well, we went through a regular chemotherapy, and for about six months, everything improved, you know, dramatically. The tumors shrunk and she was stable. And then she was off treatment for about six months. And then back in September as she's going up for a scan, another tumor had started growing in her pelvic area. And so they - we went back on the same chemo, it didn't - had no effect on her and just kept growing. And then they tried - switched to another one, it didn't work. So now she's out of options except for a clinical trial.
NEARY: And is there a clinical trial that she has a possibility of taking part in?
BOB: I'm sorry, I didn't hear what you said.
NEARY: Is there a clinical trial that she has the possibility of taking part in?
BOB: Yeah. Well, we don't know yet. We talked to the oncologist, the people at the cancer center in Duke, and they talked about a couple of clinical trials that they've got in mind for her. But now she just came off chemo, so she's got to wait a month or so before she could even start.
NEARY: Would you have any concerns about her joining a clinical trial like that?
BOB: Yeah. That was my concern is - not so much about her doing the clinical trial, but - well, yeah, I guess that - yeah, I mean, there are still options, so I guess that's, you know, that's what we have to do. But my concern is mainly just what I heard the guest say, that if they're more concerned with this experiment on her than they are about, you know, treating the disease and trying to get, you know, trying get rid of it. That's...
NEARY: OK. Mary Elizabeth, maybe you can respond to that.
WILLIAMS: First of all, Bob, I am so sorry that you and your wife are going through this ordeal. I know what an incredible stress it is, and believe me my heart is with you. So this - your wife has been doing chemo, correct? And you're looking for a trial that might be immunotherapy, because immunotherapy is very, very different than chemo. And for people who have ran out of options with chemo, immunotherapy can really be a lifesaver. And that's something that I think you would want to get clear on. You know, are the doctors at multipurposes - yes, absolutely. They want to proceed with their trials. They want their trials to be successful. They want to be successful.
But I also know, from most of the people who I work with, really with the exception of that one doctor, that they also are very, very excited about prolonging lives and saving lives. And that this is really - we are now in a game-changing time in cancer treatment. And a lot of us - those of us who are in trials and those of us who are awaiting trials, are really at the forefront of a dramatic sea change in cancer therapy. And I would definitely talk to your doctors and talk specifically about immunotherapy trials, because this is a changing time in cancer. And for people who don't - who aren't responding to chemo, they are sometimes responding to immunotherapy, as I have.
NEARY: And I guess I would like to say to Bob, I don't want to - you just think - leave you with the impression or - I'm sure Mary Elizabeth doesn't want to leave with you the impression that just because there have been a couple of doctors that have been a bit cold that that would be a reason for her not to take part in this clinical trial, correct. Mary Elizabeth?
WILLIAMS: Oh, absolutely. And if, you know, what happened with me with one doctor who was not very nice, I said I don't want to see him again, and I didn't. And you have, you know, you have a voice in your treatment. So you are making certain deals or making certain, you know, certain acquiescences, but you are also always empowered as a patient. You and your wife are always - always have choices. And it's about asking questions and getting information and working, you know, working in partnership with your team. And I really wish you both all the best, and that this is, you know, stage four - as my doctor said to me stage four is not what it used to be, and that's very important for all of us to remember.
NEARY: Bob, I know this has been a really difficult - it's a very difficult time for you, and I wish you the best in this decision and with your wife. And thank you for calling, so much.
BOB: Thank you. Appreciate it.
NEARY: I hope this was helpful. OK. We're going to take another call, now, from Martha. She'll calling from Kent City, Missouri. Hi, Martha.
MARTHA: Hi there.
NEARY: Hi. Go ahead.
MARTHA: I was recently - I had breast cancer. And I just wanted to state the fact that the reason I did not choose to do a clinical trial, which my oncologist really wanted me to do, was because I had a family discussion, and the family decided that they would, rather me going to chemotherapy immediately. And if I had gone into the clinical trial, I could not do chemotherapy immediately.
WILLIAMS: Yeah, it's one or the other. You have to...
MARTHA: Oh, I know.
WILLIAMS: Yeah. And it's a tough, tough, tough choice. These are hard choices to make.
MARTHA: Well, and my breast cancer was - I'm sorry - but it was in the two to four percent range, wasn't typical. Ninety-six to 98 percent of all of the breast cancers are not what I had. And my family just felt like I should move forward with the chemotherapy and not do the clinical trial, even though I felt like, as a good citizen, I should've done it.
WILLIAMS: Your first obligation is to your, obviously, yourself and your family. Don't worry about the rest of us. Take care of yourself.
NEARY: Yeah. Oh, no, Martha. Yeah. Absolutely. I was thinking - you know, listening to you, what I'm thinking, the point we need to make here is exactly what Mary Elizabeth just said, which is you have to be comfortable with whatever decision you make. It is your decision, and you have to feel in the end, like, this is - I did what I wanted to do for myself. And if you, you know, feel that way, that's...
WILLIAMS: And I would also like to make the point that cancer is not, quote, unquote, "cancer." There is no one cancer. And breast cancer behaves in such a completely different way than melanoma, which behaves in very different ways than pancreatic cancer or lymphoma. They're all different, and the protocols for treating them are so, so different. And someone with late-stage melanoma has very different options from someone who has breast cancer. And, no, there are other things that need to factored in, in making choices about your health and your body and how you're going to proceed with treatment.
MARTHA: And on the breast cancer front, someone with DCIS has way different choices than someone that was in my position.
WILLIAMS: Absolutely. Absolutely. And how are you doing?
MARTHA: Well, I'm still on the pill they make you take. And I don't know, I'm not considered a survivor yet, it hadn't been five years.
WILLIAMS: Right. Right.
MARTHA: But, you know, I move forward.
WILLIAMS: Right. Stay healthy.
NEARY: Thanks so much for your call, and stay healthy. That's right. Thanks.
MARTHA: Well, thank you.
NEARY: OK. And I just want to remind listeners that you are listening to TALK OF THE NATION from NPR News. Let me read this email: My dad is on his way right now to the NIH in Bethesda, Maryland, to see if he's a candidate for a clinical trial. He has advanced localized pancreatic cancer. There are not a lot of options for him at this point. We're thrilled he has a chance to qualify for participation. The possibility of a clinical trial brings hope for those who have no hope.
It can be a win-win for the patient, the family and for society as a whole when advances in a disease are made. It gives purpose for the patient that palliative care doesn't. And palliative care, for those who don't know, is care for those who are not expected to survive. And so this is an interesting point, Mary Elizabeth, I'm wondering what your reaction is to it.
WILLIAMS: I think, it's a wonderful perspective. Absolutely. And, you know, when I went into this trial with a cancer that has a less than 10 percent survival rate, I thought that too. I thought, if nothing else comes out of this, I might be of service to other people. And I think we all need to feel a sense of purpose as we move forward in our journeys and feel like our sickness has a purpose, and our disease has a purpose. And if we're, in some way, contributing to other people's wellness, that's a great aspect of it as well.
And I'm so happy for this person's dad. And, again, I would just like to say that things are very, very different now in the cancer game. And these therapies, you know, we tend to think of cancer as - treatment as just being chemo. And this is not chemo. You know, a lot of these new things that are coming out, these new trials are from, you know, therapy and for other forms of therapies. And the way that we are coming at cancer and the way that we are treating it is changing rapidly. And people who are afraid of chemo and afraid of the side effects of chemo, this is a very different kind of a thing.
So when you're thinking about getting in a trial, it doesn't mean you're going to lose your hair or you're going to be throwing up. And there are things that are going to be different about it, but that's something else. I just like to mention that these trials don't necessarily have to be things that are going to make you sick and upset your life.
NEARY: Let's take a call now from Glenn(ph) in Florida. Hi Glenn.
GLENN: Yeah. Hi. How are you?
NEARY: Good. Thanks.
GLENN: I am in a great appreciation of clinical trials at this moment. I just went on of drug about three months ago. Excuse me, I'm a little nervous. But I went on a drug called Xalkori that was just newly released after a clinical trial three months ago. And about a month ago, I had a PET scan. And my non-small cell lung cancer has disappeared from the PET scan. So I'm staying on this drug. As you said, it's extremely expensive. My wife's insurance is paying all but $20, but the drug is almost $10,000 a month.
GLENN: And so I am very appreciative clinical trials.
WILLIAMS: Did the pharmaceutical company pay for your trials?
GLENN: No. Actually, I was the recipient. The drug was just approved after the trials. So the trials are already been completed, and I'm actually from Wisconsin. And UW Madison had never prescribed this drug before, and so I'm...
WILLIAMS: That's another aspect of the life in a clinical trial, is if you're in a trial and you are overwhelmed by the costs of what these drugs are costing. You know, if you get in a trial, the pharmaceutical companies will pick up a lot of the tab, and that is very attractive to a lot of us.
NEARY: And, Mary Elizabeth, before we run out of time, we should say that you're doing pretty well, aren't you?
WILLIAMS: I'm doing amazingly well. I am - and I am not alone in that. I went back for my CAT scans three weeks ago, and my doctor told me my tumors were 100 percent gone. Which is miraculous, given how advanced my cancer was. And I am - like I said, I am not alone. The other people in my trial are doing well. And since I've been writing about this for Salon, I've received emails from people telling me the same stories. So there's hope for all of us.
NEARY: Best news you could possibly get. That's wonderful.
WILLIAMS: Thank you.
NEARY: Thanks so much for joining us.
WILLIAMS: Thank you.
NEARY: Mary Elizabeth Williams is a staff writer for Salon. And there are links to her articles about her participation in a clinical trial at our website, npr.org. Go there, click on TALK OF THE NATION. Tomorrow, Political Junkie Ken Rudin is here. Join us for that. This is Lynn Neary, and you're listening to TALK OF THE NATION from NPR News. Transcript provided by NPR, Copyright NPR.