Being A Cancer Patient As Medicine Makes Strides, But Sometimes Not Large Enough

All week, WBUR has been bringing you a special series, "This Moment in Cancer," and the new excitement Boston cancer researchers have that cutting edge therapies and technologies could transform the way we treat the disease. We hear what this moment means to a patient.

David Kimball, retired software entrepreneur receiving treatment for stage 4 lung cancer.

David Kimball: My name is David Kimball. I'm 64 years old. I was diagnosed with stage four lung cancer in 2012. And for the last years I’ve been the beneficiary of treatment, at first Yale Cancer Center in New Haven, and then when the drugs that they had there weren't appropriate for my genetic makeup, I transferred in 2013 to Massachusetts General Hospital Cancer Center.

Meghna Chakrabarti: 2012 was when you were diagnosed.

DK: Yes. And if you just look at the raw statistics, stage 4 lung cancer survival rate is not really expected to be much more than a year and a half.

MC: And here we are in 2017.

DK: It's not in place I ever expected to be.

MC: Stage four?

DK: Yeah. That means it was in my spine, it was in my lymph nodes, my chest and somewhere else.

MC: So Dave, let me ask you, first of all — lung cancer — the first thing people think of is... smoking?

DK: Not once in my life ever. The statistics for lung cancer are interesting. It's sort of a disease that we look at and frown, saying, 'you caused it yourself, you've taken to smoking and smoking is going to kill you.' But it isn't always that case.

MC: When you first got that diagnosis was there a moment where you looked at your wife and your family and you thought: 'well I'm going to die'?

DK: Well I knew this is going to kill me, it wasn't a question of 'maybe.' So I just accepted.

MC: How did you choose what kind of therapies you were going to go after, or what kind of patients were going to be? You know there's a little fork in the road a multiplicity of choices that people can make.

DK: Yeah but we again do not really fall into the middle of any group. We happen to live in maybe one of the best places in the planet if you have a disease like this. We never — and I don't think people should — consider drug trial as a last resort. It's as good and, maybe for me it was, much better to do that early rather than later. Jumping in is why I'm here four years later, or five years later. It's not because I took the off the shelves stuff.

MC: How did you become part of the drug trials? Was it hard?

DK: For us, knowing that drug trials are really the forefront of patient care, we looked them. And going to the cancer centers, we did Yale and Boston. That's where all the action is at.

MC: You make a really good point there because I'm thinking you know in other parts of the country people have to work really hard to find the trials, locate where they are, and contact the researchers doing it and they can get in.

DK: People come from hundreds if not thousands of miles in the waiting room in Boston. There's so many seats. When the seats fill up, you're not in. You know this is life or death to some degree.

MC: What were the first treatments that you received?

DK: I'm a person with non small cell adenocarcinoma with a mutation called EGFR. And the EGFR mutation has a drug that's been on the market for about 10 years maybe a little longer called Tarceva. I took that initially and the response was very positive, very quick.

MC: Did it stop the growth of the tumor?

DK: It reversed it to some degree. And also I've had a whole series of metastases in my brain and the treatment for that is wild.

MC: What is it?

DK: Stereotactic radiosurgery. They can pinpoint the target of the x-ray precisely at the small tumors in the brain and they move it around and they shoot them one at a time.

MC: And what was it like being in the machine?

DK: They screw this halo onto your head, and you lie down in the X-ray machine you're bolted. Your head is sort of clamped into it and you slide in. It's much bigger than an MRI. But you get moved around and zip zip zip they shoot one at a time the biggest of the brain tumors that they think are worth getting. And getting to that point involves a whole series of dialogues: 'Is it worthwhile doing this? What are the consequences? What are the alternatives? And we spent days thinking about that because the alternative to a radio or targeted surgery is what they call whole brain radiation. You only do whole brain radiation when things are really bad because they don't come out usually the same

MC: But you didn't have to do that.

DK: We were very very lucky.

MC: Do you still have tumors in your brain?

DK: Yes. The current drug I'm on, on my third really, seems like it continues to hold the brain tumors in check.

MC: What was different or special about that drug?

DK: Well that was Tagrisso. As I said my first genetic target was EGFR. And when the EGFR drugs stopped working, there's another sign that they go after which is called a T790M mutation. And I have that. For T790M, Clovis started to go after that — that drug failed. I was the first person to be switched from Clovis to AstraZeneca's drug and they didn't know if it would work. And now a whole bunch folks have switched over.

MC: So these are drugs that target specific genetic factors in your tumors.

DK: Yes. My particular mutations really fall into like this small percentage of people with lung cancer. It's like this true that keeps branching and I've been lucky to have
my branches walk down the path of the drugs happened to be you know coming out of the gate.

MC: For the other treatments that you received before the current treatment that you are undergoing, did you have side effects?

DK: Yes. The Tarceva was just normal side effects nausea, some skin things, very understandable and manageable. I didn't react far out in the extremes. The second drug, Clovis drug trial, which, because of its side effects was pulled from market and the consequences I got was very very high blood sugar, higher than a diabetic would get — it really just shot way up. They had to keep reducing the dose, reducing the dose, it stopped working, and I switched to a different drug. And then a few months later I'm talking to my docs, and she said, 'You know something? We're asking everybody about their vision. How's your vision? I said, 'Coming in lately, through the tunnels really kind of blurry.' She said, 'Well you know what? We've scheduled three or four Clovis patients for cataract surgery. Let's check your eyes.' And it turns out because of the drug I ended up with cataracts in both eyes, and ended up getting cataract surgery.

MC: But you're not on that drug anymore.

DK: That drug was off the market. I'm on to the next one which was Astra-Zeneca's Tagrisso. I was on it as a trial, it's now been released for general use.

MC: I see. Okay, so that's what you're being treated with right now?

DK: Well that has stopped working, except for the brain. The lungs it wasn't doing very good. So I'm now in chemotherapy. So at one o'clock today or two o'clock today, I'll get chemotherapy.

MC: As in, like kind of more traditional chemotherapy?

DK: Very traditional. So I've run out of magic pills.

MC: Running out of magic pills, wow do you feel about that.

DK: I wish science was a little bit more advanced. And I know it's going to happen, it's just the clock is not perfect for me. But I just got five years out of that, so most people don't get that.

MC: Has insurance covered everything for you so far?

DK: You know I have been the beneficiary and probably the best insurance policy in the country because my wife works for state government. So I'm very happy with my life and my situation. I don't think as many people would be as lucky.

MC: As I imagine that these haven't been cheap therapies.

DK: The pills on the street market are around 50-70,000 a year, maybe more. I've taken a lot of drugs and I think it took eight or nine this morning. I've never once seen what any one drug costs. All I know is my co-pay: $5.

MC: You said you've run out of magic pills. That's how you phrased it when it comes to the drug trials that you were on. You don't regret having done any of the trials?

DK: Not for a minute. And I'm here. I rode year and a half ago in the men's nationals because the drugs — I mean my quality of life has not been what a lung cancer patient's stage four should have been.

MC: So do you feel like that there's more hope because of the trials and treatments and research that's going on now than if you had been diagnosed, say, 10 years ago?

DK: The way my doc described progress in lung cancer specifically, she says, 'In the last 10 years there have been 12 drugs approved for lung cancer and eight of those were last year.' And so everybody knows there's going to be some really tremendous valuable progress. Hopefully soon.

MC: Hopefully soon for you.

DK: Soon for everybody. Now there's a long queue here people are joining this bus all the time.

MC: Do you feel like there's the possibility that because there seems to be so much excitement and sense of progress that that some patients may experience a false hope?

DK: Well I think we all listen to the words that describe the upsides of our futures rather than listen to the words that talk about the pitfalls because it's so much more what we want to hear. I could tell you a 20 percent chance of working out well and you're pretty happy. I would be. I mean, it doesn't really pay to focus on the other side.

MC: No it doesn't. Do you and your doctors your family talk about what your prognosis is now?

DK: My wife understands that but just doesn't want to go there and talk about it. My doc, when I talk to her, I think we're pretty honest. And it doesn't take a lot of words for me to understand them. I look at numbers and I can see.

MC: What are the numbers saying?

DK: Let's assume that the targeted therapy keeps the metastases in the brain in check, the lungs are going to probably spike out when this treatment benefit goes away. And what I'm taking now — the carbon platinum — is not given regularly, because if you take too much it'll kill you.

MC: This is the chemo?

DK: Chemo, you take it until you get the benefit and you stop. I'm thinking that I may not be as happy in a year. Just before I started chemo, where the other drugs wore off, my chest disease progressed and I was on a fair amount of Oxycontin. It was a lot of pain and it came on really sudden and it just wasn't fun. So I know this thing kicks in really fast when it gets going.

MC: You're writing about your experiences with cancer and cancer treatment. Why?

DK: That's a hard question. The idea that the more people feel are in this together and want to help each other I think the better we'll be in everything. And cancer is just one of the things in life. It creates awareness of the value of life. I now have a date and I know things are really quite finite. So I've done some things. I'm surprised at how many things we did in this short while. I appreciate the days that I have alive.

MC: I imagine that there are a lot of people hearing this who either possibly going through this themselves or know someone, because as you said so eloquently, there's a lot of people getting on the bus. What do you want them to know? What's your message to them? Especially given that, you know, we're having this conversation in the context of: there does seem to be so much more excitement around treatment. What do you want your fellow cancer patients to know?

DK: Well for those not aware of the value of targeted therapies and drug trials that's an option they should consider earlier rather than later. There's not a good reason to wait. That's just the treatment side. The other part of this equation is living with cancer. And what I've tried to do is use that experience as a way to make me appreciate more what I do have, and try to focus less on what I'm going to lose. And I've been very fortunate that the pain and the disabilities have been minimal for my situation and that's not the case for many people, they have a lot of things to distract them but until you get to that point, let's celebrate life. Let's reach out to people that we care and love so much and tell them.

MC: Dave Kimball thank you so much. Thanks for coming in.

DK: It was an honor it's a privilege to have this chance. Thank you.