a cll survivor story: accessing world renowned medical...

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A CLL Survivor Story: Accessing World Renowned Medical Care Close to Home Webcast March 30, 2011 Dennis LeFevre Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. Please have this discussion you’re your own doctor, that’s how you’ll get care that’s most appropriate for you. Andrew Schorr: Can you have your local doctor administer treatment as part of a leading edge clinical trial from a medical center that's hours away? The answer is yes. Hear one man's story next on Patient Power. Hello and welcome to Patient Power brought to you by Olympic Medical Center, a network member of Seattle Cancer Care Alliance. I'm Andrew Schorr. Well, you may know that I was diagnosed back in 1996 with a leukemia, chronic lymphocytic leukemia. I was 45 years old, came through a routine blood test, and it scared the daylights out of me, and I was in a clinical trial. Well, I'm happy to have this conversation with someone else who followed a similar route, and there's a moral to this story, and I'll tell you about that right now. And that is you can participate in an advanced clinical trial, and it may be from a medical center that's not around the corner, but the treatment can largely be given right where you live. And so that's an advantage that certainly is part of the network partners like Olympic Medical that's part of the network with the Seattle Cancer Care Alliance. Let's explain how that works with my new best friend, another CLLer, that's Dennis LeFevre. Dennis lives Sequim, Washington, one of the most beautiful places on earth. Dennis, thank you so much for being with us and thanks for being willing to tell your CLL story. First, let's start with the final chapter. How do you feel today? Dennis: I feel wonderful. And thank you, Andrew. It's a pleasure to do this. Andrew Schorr: Well, thank you. So let's go back. You're 55 years old now, but let's go back a few years. So you turned 50, and your wife Sherry says get a physical. Get a physical. Get a physical. So you waited a while, right, but then you go to local clinic and see the physician's assistant, have a blood test. What happened? Dennis: Well, he called me into his office, and of course that's never a good sign, and he sat me down and he indicated that my white blood cell count was abnormally high, and he typically said that that indicates CLL.


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Andrew Schorr: And you said, what is that? Dennis: And I said, what? Exactly. And I too had the same reaction of absolute fear and bewilderment. Andrew Schorr: Well, the word--you know, leukemia, and as you learned, it's a cancer. Cancer's scary, leukemia is scary and even more unknown. And he probably said to you when he was saying, well, your white count is elevated, how do you feel, and you said fine. That's wrong because why would your white count be high unless then it was an illness like CLL. So kind of cockeyed. So you did research I understand to try to find was there a specialist to go for a second opinion on what to do. Smart thinking, I think. So where did that take you? Dennis: Yes, I did do some follow-up. Any reaction I think is natural, but to ask for a second opinion I did some searching on the internet, and it showed Dr. Pamela Becker with SCCA in Seattle as one of the leading experts on CLL. So I gave her office a call and was fortunate enough to secure an appointment with her. Then she confirmed that, yes, indeed, I do have CLL, so we began treatment--I began treatment with Pamela Becker. Andrew Schorr: We'll talk about that and take our listeners through that. So, first of all, I always recommend, and I wrote a book about it too, now out, called The Web-Savvy Patient, using the internet to identify a specialist in what you have, and I think that is great. That's a great approach. That is the approach, really. And so it must have given you a lot of confidence that you go to the Seattle Cancer Care Alliance and here's a physician, this is what she does. Dennis: It did, yes. Andrew Schorr: Okay. So then the question is what do you do. So I think in your case you had a similar approach as I did. You had no symptoms, right? Dennis: That's correct. Andrew Schorr: So no symptoms, so in CLL for many years the approach has been, no symptoms, let's watch it, because quite frankly this illness is one where sometimes it can kind of languish there and not really go anywhere, and so you were monitored for a year and a half?


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Dennis: Yes. Yes. Andrew Schorr: So that's blood test, but then what happened? What was going on with the white count after a year and a half? Dennis: Well, they started to escalate at the rate that made Dr. Becker very uncomfortable. Andrew Schorr: Right. Well, if the specialist is uncomfortable, then you're uncomfortable. Dennis: That's exactly right. Andrew Schorr: So that led to a discussion with the Seattle Cancer Care Alliance specialist, and we should point out that Seattle is about getting on the ferry at Bainbridge Island and all that, going across water. That's maybe two and a half to three hours away from your home. Dennis: Yes. It can be a long jaunt. Andrew Schorr: Right. So it's a day trip. So you go over there, you see her, and you come up with a treatment plan. And the treatment plan was, I understand, Rituxan or rituximab, fludarabine, I think it's Fludara it's also known as, to do that over the course of six months. Monoclonal antibody and a chemotherapy drug. Dennis: That's correct. Andrew Schorr: All right. How did that go? Dennis: Just the thought of that, setting up that treatment schedule in Seattle, was daunting. Andrew Schorr: Right. Because it would be like four, five days, I think like one week a month, something like that? Dennis: Yes. Yes. Five days for every 35 days would require treatment.


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Andrew Schorr: That would be a lot of commuting to Seattle. They'd know you real well on the ferry boat. Dennis: Absolutely. Andrew Schorr: So you asked, could I do this at home. Dennis: I did. Knowing the logistics and the difficulties and working full-time, I had to ask the Doctor to see if there was some way where I could take treatment here closer to home in Sequim. Andrew Schorr: So guess what. The Thomas Cancer Center at Olympic Medical Center in Sequim, right near where you work, couple blocks away, is a network partner of the Seattle Cancer Care Alliance. You could have the treatment guided by Dr. Becker but working with Dr. Thomas Kummet, a medical oncologist right there in your home town. Dennis: Yep. Very, very good situation. Andrew Schorr: You must have been relieved. Dennis: I was. Andrew Schorr: And I'm sure Sherry as well. How did the treatment go over all that time? Dennis: The treatment went quite well. It was monitored and administered, like you say, by Dr. Kummet, extremely efficiently, and in fact, I had no ill effects from the chemotherapy, thank god, and was able to go back to work after each session during the weekly sessions that I did have. Andrew Schorr: So you mean you'd like walk over there, have drug treatment for your cancer and then walk back to work? Dennis: Yes.


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Andrew Schorr: Holy cow. Dennis: I know. It was quite, quite a benefit. Andrew Schorr: So that was the first part of your treatment, but we should mention that you agreed to be in a clinical trial. We'll describe that in a minute, but I think people always wonder, and I was in a clinical trial, too. Dr. Becker suggested to you, I think I have a clinical trial that I'd recommend to you, and we'll describe that, but the idea of being in a clinical trial, why did you do it? Dennis: Well, I thought the benefits of it being a positive test and result would provide my life as cancer-free. Andrew Schorr: All right. Wanted to give yourself the best shot. And obviously at that time you had a lot of respect for Dr. Becker. Dennis: Yes. Andrew Schorr: So let's describe that. After the Rituxan and the Fludara, which you had right there at Olympic Medical over six months' time, walking from work and walking back, the idea was then to have a very specialized treatment that was actually targeted radiation delivered intravenously. It's a drug called Bexxar, and so the idea was is that then could sort of mop up any remaining cancer cells. And so that is a little trickier to administer because I think you have to come over to Seattle and be in a lead-lined room, right? Dennis: That's correct. Actually, that was administered at the University of Washington. Andrew Schorr: Mm-hmm. All right. But that whole process between the preparation and the actual treatment was just three days. Dennis: Yes. Andrew Schorr: So the treatment close to home, that went over many months, but just three days with this very special treatment that was part of the clinical trial.


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Dennis: Yes. Andrew Schorr: All right. How did it work out? Dennis: Well, again, so far it's been wonderful. All of the treatments combined have produced a complete remission for the last two years. Andrew Schorr: Wow. Now, so you've got five grandkids and three grown kids, and a lot of them are in Washington State here. So you're looking forward to a long future with them. Dennis: Absolutely. Andrew Schorr: So let's talk about this coordination. So somebody says, well, I want to get the benefit of that, you know, super subspecialist like Dr. Becker, who eats, drinks and sleeps my particular cancer in this case, and identify one at the Seattle Cancer Care Alliance, but I don't live around the corner, but they have a pretty good medical center here but they don't have somebody who just specializes in what I've got. Is there a way they can work together, which is the idea of this whole SCCA network? How did that coordination work out for you? Did you feel everybody was in the know, the reports the went back and forth, everybody was on the same page? Dennis: Yeah, it was very smooth. I never once realized any kind of miscommunication between the facilities at all or the personnel involved. It--the tests were done, the blood tests were monitored for everything that was specific to the study. It was very smooth. Andrew Schorr: Wow. That's all anybody could ask for. Dennis: It was. Andrew Schorr: So when you tell people, and I'm sure you have over the last couple of years, you know, you say, well, I was actually in a clinical trial and I think that really did the trick. And they say, well, did you have to go like across the country or something, and you said, well, no, I got most of my treatment like around the corner. What do they say? Dennis: You're kidding me. How did you manage that?


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Andrew Schorr: Yeah, I think that's right. Well, that's what's available now with a network like the SCCA network, and I'm sure that Dr. Kummet learns too as the doctors work together. So you have a more general medical oncologist and you have a specialist and they're working hand and hand. That's kind of neat. Dennis: Yes. It's a great situation. Andrew Schorr: All right. Well, what a happy story. So, Dennis, you know, I want to tell you I'm like a 15-year survivor now. I was monitored for a while with chronic lymphocytic leukemia, and I think I'm 11 years post treatment. I was in a different clinical trial, but that one seemed to work too. And so I hope it just goes well for you. I've taken no medicine since then. Dennis: Oh, thank you. And congratulations on that. Andrew Schorr: Yeah. Dennis: Good for you. Andrew Schorr: Thank you. But I want to congratulate you too because, you know, unfortunately, and maybe you've heard this, a very low percentage of American adults are in clinical trials. And, as you know, not only did it give you and me a shot at sort of tomorrow's medical approach today, but it also gives answers for the researchers on what might work for other people. Dennis: Exactly. Andrew Schorr: And so I'm sure you get good about that, that there were knowledge that came out of it for Dr. Becker and other CLL doctors around the world. Dennis: Yes, indeed. Andrew Schorr: So, Dennis, you've got the weddings of grandchildren to dance at, I hope.


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Dennis: Yes. Andrew Schorr: And hopefully no more bouts of cancer. And so do you have checkups with Dr. Becker or you send blood test results from time to time? What's the follow-up? Dennis: Well, I'm on a three-month regimen for the first two years, next month is the last three-month test, and I go through with Dr. Kummet on that, and he corresponds with Dr. Becker on all the blood tests. Andrew Schorr: Wow. That's so neat. So all the coordination that allows you the convenience of not having to get on that ferry boat. Dennis: Absolutely. Andrew Schorr: All right. Dennis: I still have my travel letter from when I had the isotope infusion, and they had to give me a travel letter in case I set off the alarm on the ferry. Andrew Schorr: Oh, yeah, yeah. You would have been radiated. I understand. Dennis: Yes. Andrew Schorr: Well, Dennis LeFevre, thank you so much for being with us. All the best, and thanks for helping us understand how someone can participate in a clinical trial and, at least if you're part in this case of the SCCA network, it can all work hand-in-glove and be great for a patient like you. All the best to you, Dennis. Dennis: Thank you, Andrew. Andrew Schorr: All right. Well, this is what we do on Patient Power, and it's really fun for me to talk to another CLLer, if you will, who is doing so well, and also bring home that point, as it


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worked out for me, to be in a clinical trial that originates not around the corner and really have everybody work together and then have the convenience of getting treatment close to home. I'm Andrew Schorr. This program has been brought to you by Olympic Medical Center, a network member of Seattle Cancer Care Alliance. Thanks for joining us. Remember, knowledge can be the best medicine of all. Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. Please have this discussion you’re your own doctor, that’s how you’ll get care that’s most appropriate for you.

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