Living With Myeloma Webcast April 7, 2010 Tanya Wahl, M.D. Steve Henkel 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. Steve s Story Some cancers are not curable, but these days they can often be well managed without diminishing the quality of life for patients. Coming up, Dr. Tanya Wahl, medical oncologist, will discuss treatment for multiple myeloma, and you'll also hear from her patient who now lives an active life with myeloma. It's all next on Patient Power. Hello and welcome to Patient Power brought to you by Overlake Hospital Medical Center, a network member of the Seattle Cancer Care Alliance. Well, if you are diagnosed with cancer it is a scary word and, believe me, I know. I was diagnosed with leukemia, but fortunately now, ten years later, continue to do well. But when it happens, it can just be terrifying. It did happen to really someone who lives near me on Mercer Island, Washington. That's Steve Henkel. Steve, you're 75 now. We're going to tell the happy part of your story, and we're going to meet your Overlake doctor who has made a huge difference for you, but let's talk about when it started. Age 73, in the spring you were opening a window. What happened? Well, my left shoulder popped, which led to my visit with my orthopedic surgeon who x-rayed it and found a myeloma in my left clavicle. Now, did you have any idea what myeloma was? I had no idea at all. I thought it was some kind of skin disease. Right. Which is melanoma, of course. Yes. 1
But it can be confused. But here you are, myeloma, but you thought maybe initially you'd go to the orthopedic doctor, you'd have some bone surgery or something and you'd be okay. That wasn't the case. So you get referred to in this case a radiation oncologist, and they're looking to see if there are other places where this cancer was. And they found some, right? That's right. They found a tumor on my thyroid cartilage. So that led to recommendation for having radiation to try to get at this multiple myeloma, and you started that. And at the front end of this Dr. Wahl, I was referred to her, and then to the radiologist. We're going to meet Dr. Tanya Wahl, a medical oncologist at Overlake who became the quarterback for your care in just a second, but the first course was let's do radiation to try to reduce the size, to get at these lesions, and you began that. Now, when you did had it really hit you what you were going through, that you were a man diagnosed with a serious cancer or, were you in the moment, if you will? It didn't really strike me until about a week and a half into the radiation when I began to really feel pretty miserable, and the criticalness of being in radiation, I understood the impact of that and then it struck home, yes. Right. Now, radiation was strong therapy for you, and while it was reducing the size of the tumors you ended up being in the hospital for a while. And how would you describe your condition? How low had you gotten, if you will? Well, the radiation on the thyroid cartilage really affected my ability to swallow and to take nutrition, so I had to go into the hospital and receive intravenous feeding. Right. You were a sick puppy you told me the other day on the phone. I think so, and a friend of mine who is a retired physician visited me in the hospital and he was absolutely certain I was terminal. So that kind of belled the cat for me. 2
Right. Well, I want to remind our listeners, though, as we do this program that it's almost two years later, and we're going to talk about what Steve does now in a very high quality of life. So you mentioned Dr. Tanya Wahl. She was your medical oncologist and remains that today. And you did get out of the hospital and ultimately were able to have really state-of-the-art myeloma medicines. Let's meet Dr. Wahl and learn a little bit more about that, and we'll continue hearing about your progress, Steve. Dr. Tanya Wahl is a medical oncologist at Overlake Hospital Medical Center and, Dr. Wahl, Steve is there with you at your office today and he's doing well. Multiple myeloma, is this one of these cancers where we have made progress? Progress in Myeloma Treatment It is, actually. Although it is still not a curable disease there is a great deal of optimism that it will be curable some day, and just in the last seven or eight years there have been a number of new treatments made available to patients that have remarkably improved how well we can do by them and how well they can live with the disease. Right. And there have been clinical trials and a lot of investigation and studies. I've heard some of them. Now, there are different types of so many cancers now. Multiple myeloma is one of them. As you investigated further what Steve had what type did he have and how common was it? Well, the hallmark of multiple myeloma is something called a monoclonal protein. Myeloma is a cancer of plasma cells, which are a type of white blood cell that make antibodies protein, and when you have multiple myeloma a particular clone of those plasma cells has overgrown, and all of those cells are making the exact same copy of the exact same antibody, and that's what you can pick up in a test looking for a monoclonal protein. There are four basic types of monoclonal proteins, and they're called immunoglobulins, or IGs, and they can be either IgA, IgM, IgG, or IgD. The two most common are IgM and IgG, and Steve had the rarest, which is IgD. Wow. So a lot of smart minds have to come together to say, gee, what do we do with this guy with this rare cancer. What can we offer him? Now, we mentioned that had your institution is a network partner of the Seattle Cancer Care Alliance and I know you had spent time in some of your education at Fred Hutchinson there, part of that. So is that an advantage to patients that you have bright minds to come together to see what is right for Steve? 3
Well, we certainly hope so. You know, we're very fortunate here at Overlake and I think probably everywhere in the Puget Sound to have the Seattle Cancer Care Alliance in our back yard, so to speak. The network gives us ample opportunity to be in close contact with the experts there and to feel welcome to contact them and ask questions and make referrals and get advice about the best thing to do for patients with rare disorders like this. And there were phone calls. You called upon people you know there related to Steve. I did actually, yeah. Right. Now, the other thing that's going on in myeloma, we talked about new medicines, new approaches. I'll just mention two, and I'm sure you can think of others, but two that are on the market approved are Velcade and Revlimid, and I think, Steve, you've taken Revlimid, right? That's correct. Okay. So that's helped you, newer medicines helping people do well. And then there are also clinical trials, and of course any of these approved medicines had to be in clinical trials. So is that part of this network partnership as well, is availability of trials? It will be. Currently there aren't any trials available at the network sites in myeloma specifically, although they do have of course a number of trials at the Seattle Cancer Care Alliance. As the network develops over time we're hoping that more and more of these trials will be available locally at our site. Life After Treatment Oh, neat. Okay. Well, I mentioned, I kind of alluded to the fact that Steve is doing well. So we go back almost two years. Steve was in the hospital. He described himself as a sick puppy. You said, Steve, your friend, a physician, thought you were not getting out of there. But you did. And so you came home, and your wife, Denny, how many years have you been married? Almost 55. 4
Wow. Four children, ten grandchildren, everybody worried about you. You got your swallowing back. You were able to start eating eventually normally. You told me the other day you went with your children to do something I was just amazed at. What was that you did? Well, last weekend my three daughters and my wife went to Whistler, and they got me on a double black diamond run, which is about as difficult as you can get, and when I--I hadn't done anything like that for about ten years, and I survived, didn't fall, and I'm here, and I don't think Dr. Wahl would be very thrilled about my doing that. But anyway I did it and I probably won't have to do it again. But we should say, and first of all, congratulations on that, and I heard her giggling there. I think it's great. Thank you. But you also though regularly go to the gym now. And you're busy with your hobby of woodworking. Didn't you tell me you're making some kind of an elaborate chair? Yes, I'm making a very challenging chair, and I'm questioning my wisdom of even undertaking it. But I also love fly fishing. And travel. And travel, yes. Now, what's this about a big trip coming up? We have nothing really big coming up except we're going down into southern Utah and hike in the canyons and spend some time in Grand Canyon, probably doing some serious hiking there. Wasn't there something to India or something? 5
In the last year they've been to Bhutan and to Argentina and to Death Valley. Yeah. So this is a man who some people were saying was at death's door. Dr. Wahl, it must just make you - it's thrilling. Let's face it. You go back a number of years, oncology was a tough field, and now more often you're able to see just a recovery like this. It must just make it all worthwhile for you. Yeah, it is. It's actually really exciting to see patients like Steve. He's back. I didn't think he was going to die. I had faith he was going to pull through that time, but he was very sick. He had to be on tube feeds. I think he had lost a lot of hope, to be honest, but he tolerated Revlimid fine. He took it for a little over six months. He hasn't been on it now for I believe it's nearly a year. A year. Yes, it's a year now. And he's in remission, and he's living a full and active life, and it's, you know, it's thrilling of course. It's really exciting to be able to see people return to that level of health. And you mentioned remission, and so there's for instance bone strengthening medicine he takes, I think. Yes. Zometa, which is used broadly in myeloma and some other areas. So, Steve, you're getting that, so we think about you skiing and falling and, oh, my goodness, have your bones been weakened, but it sounds like you've been getting bone strength back too, keeping them strong. Right. I think one of the major things that Dr. Wahl encouraged me to do was increase my core strength because my inactivity and being in and out of bed and just having no energy, and that was the big turning point in my major recovery was rebuilding my core strength so I could stand straight and be much more active. 6
Yeah, you're going to the gym. I like to talk about the doctor-patient relationship, and I certainly know that as a cancer patient and cancer survivor, but any serious condition. You have some strong feelings about Dr. Wahl and what she's meant to you. Do you want to say it here, publicly, Steve? Well, I had a wonderful team, and you mentioned Dr. Wahl kind of as the quarterback, but in concert with my incredibly wonderful wife, Denny, and my family, Dr. Wahl just was an inspiration to me and certainly knew how to treat my situation and give me the confidence to be where I am now. And I just can't say enough about Dr. Wahl. She gave you your life back. That's true, yes. Steve, now, when someone has these serious situations, you're in the hospital, very sick and getting very powerful medicines, you have to have confidence. So Dr. Wahl inspired confidence for you. Yes, she did. Hope for the Future And it sounds like for your family who cares so much about you. Dr. Wahl, we're on a journey with multiple myeloma and other cancers too. How encouraged are you? I know it doesn't always turn out like Steve's situation for sure, but you have a view into the science and as part of this Seattle Cancer Care Alliance network you're talking to a lot of people who are in the lab as well. How do you feel things are going related to cancer care and what we can offer people once we understand their specific situation? You know, both in academics and in the pharmaceutical industry there an immense interest in targeted therapies for malignancies, and I think that virtually every pharmaceutical company has a major pipeline in oncology, which is very exciting. It's all really based on science. Where 20 years ago there was a lot more guesswork in what might work, these days they're starting with developing drugs based on known chemical pathways utilized by malignant cells. So it is very exciting. It has not been as quick to come to the clinic as everyone would like to see it, and so there's still obviously some frustration with that, but I fully anticipate the end of my career looking very different from the beginning of it in terms of the tools I have available to help my patients. 7
I'm sure. Now, you mentioned about more targeted approaches we talk about in cancer. So we talked about the more rare type of multiple myeloma Steve has, so it sounds like job one when someone comes to you is to try to understand what are you dealing with the biology of their cancer. Right. To see where you are and to then see what approach works for that. Right. So based on the biology, having an idea of what you can expect the cancer to do behaviorally and how quickly it might be a problem for the patient and therefore how quickly you need to act and how aggressively you need to address it is all important. Especially when you're talking about a malignancy that can't be cured, you always have to weigh the pros and cons of treatment versus watchful waiting. So, yeah, and increasingly we know more about how to predict what that behavior is and make more informed, better decisions for our patients. Steve, what's your outlook for the future? How do you think about the future or even about tomorrow given that you've come up like Phoenix, you know, you've risen and you're having such an active life? Well, I just feel that I've been given an additional chapter in a wonderful life, and now I have a bit more zest and eagerness and every day is extra special. I can't describe it any more fully than that. That says it all. And should you need care, sometimes I think about that with my leukemia because we know we're in remission, we'd like to believe we're cured but we're in remission, that you have confidence in Dr. Wahl and standing behind her is a whole team that can help if you need it. We've never really talked so much about the future because it's month by month at the present time to see the direction of the scores of my blood tests and so forth, but I'm confident that because I was able to be treated successfully with Revlimid and dexamethasone, that I can, if I do fall down that I can be picked up with those again. 8
Yeah. Amen. Dr. Wahl, so just to wrap up then. So as Overlake, being part of this network partnership then, it sounds like as you move forward in cancer care you have a team at Overlake and you have a broader team that you draw upon so as people come to you you can offer them really state-of-the-art care. Absolutely. I hope for those folks who are listening that while they may be facing a cancer diagnosis now and maybe specifically with multiple myeloma, they can see how things change. And Steve Henkel, age 75, skiing double black diamonds, whether it's doctor's orders or not is a great example of how things can go. Steve, we want to wish you, your wife, Denny, of so many years, your children, celebrating, your grandchildren, want to wish you this happy chapter in your life. All the best. Thank you, Andrew. And Dr. Tanya Wahl from Overlake, medical oncologist there and her institution now being a network member of the Seattle Cancer Care Alliance, all the best to you. I hope you have many happy stories like Steve's. Thank you very much. Thank you for being with us. Well, I love these stories, and I love meeting with folks like Steve and Dr. Wahl. I'm Andrew Schorr. I want to thank Overlake Hospital Medical Center for connecting us with these two wonderful folks and note that they are a network member of the Seattle Cancer Care Alliance, so it sounds like a great group working together. Remember, knowledge can be the best medicine of all. Thanks for joining us. 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. 9