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Taking Charge of Your Health


♪♪>>Behind every heartbeat is a story we can learn from. ♪♪ As we have for over 80 years, Blue Cross and Blue Shield Companies are working to use the knowledge we gain from our members to better the health of not just those we insure, but all Americans. Some call it responsibility. We call it a privilege. “Second Opinion” is funded by Blue Cross Blue Shield.>>”Second Opinion” is produced in conjunction with UR Medicine, part of University of Rochester Medical Center, Rochester, New York. ♪♪ [ Applause ]>>Welcome to “Second Opinion,” where each week we gather medical experts to discuss a real-life case. I’m your host, Dr. Peter Salgo, and I want to thank all of you in our live studio audience for being here. And, of course, I want to thank you at home for watching, as well. Our experts today are Dr. Elizabeth Guancial, medical oncologist from the James P. Wilmot Cancer Center, and primary care physician Dr. Lou Papa. And now I want you to meet our special guest, Ronald Eckert, who’s here to share his story.>>In the summer of 2011, I was combing my hair, and I felt a hard lesion on the top of my head. It was subsequently biopsied. It turned out to be a melanoma. I had extensive testing done. It did not show any spread of the tumor outside of the scalp. I had an operation, a wide removal of the skin lesion. There was no evidence of spread based on the tissue removed, and I was feeling fine. Five months later, I felt two additional lesions on the top of my head in a different location. The biopsies at that time, one was a melanoma, one was squamous cell carcinoma. Extensive testing was done again. There was no spread of tumor found. I had an operation to remove both of those lesions, and the pathology did not show any spread beyond the scalp. Three or four months later, I had a third lesion. It was biopsied. Again, melanoma. I had extensive testing at that time, which indicated that it had spread to both my lungs and my liver. I had the lesion removed. At that time, I had three operations with stage 4 melanoma.>>Ronald, you’re a physician.>>Yes.>>Sure during your career you’ve had to deliver bad news from time to time.>>Yes.>>What’s it like being on the other end of that?>>Well, I always knew it was more fun being the doctor than the patient. And it was difficult, because at the time when I was diagnosed with stage 4 melanoma, this was back in 2012, there really wasn’t much out there for a successful treatment of melanoma. And the prognosis was grim, so I basically, at that time, felt I probably had six months to a year to live.>>That’s what I was taught in medical school, too. There wasn’t a lot to offer. It was a bad tumor. It goes through the blood, so you can’t just excise it and hope that you got all of it. It’s probably escaped. You knew all of that.>>Yes.>>Lou, if he’s in your office, you’re his primary care physician, what’s going through your mind? What are you telling him?>>You know, years ago, my mother-in-law, unfortunately, passed away from melanoma, pretty much as you said. She was diagnosed. Six months later, she was gone. So once you have somebody who has metastatic disease, depends on where you are in time. You know, in the past, the treatments were really difficult to tolerate. Most people couldn’t tolerate. They weren’t very effective, and a lot of times you basically try some treatment and get them prepared.>>Prepared — Let me be very clear. Prepared to die.>>Correct.>>Let’s be very straightforward about that.>>Absolutely.>>You knew that.>>Yes.>>Right?>>It’s very important. You don’t want to — You don’t want to, you know, squash all hope, but you want to be realistic. You want to make sure that the patient’s aware of all the possibilities, that as you’re going along in treatment, that the odds are that you’re not going to see beyond six months or more.>>Now, Elizabeth, why don’t you take us back just a little bit? What is a melanoma? How does it spread? Why is this prognosis, or was this prognosis, as bad as it was?>>Sure. So, melanomas are tumors that develop within specialized cells within the skin. And unfortunately, even a small melanoma can cause trouble. The primary way that these tumors spread is by getting into the bloodstream, and then they circulate throughout the body and land in some typical places.>>And to interrupt you, when tumors spread via the lymph nodes…>>Mm-hmm.>>…the concede is if you get those lymph nodes, you get all the tumor, but once it’s in the bloodstream…>>Correct, correct. So lymph node usually is an earlier site of spread, and sometimes even when it gets to the lymph node, it’s potentially curable, specifically through surgery. And so your team did exactly the right thing by cutting it out. But unfortunately, even when you catch things at what we think is an early stage and it’s small, there could have been cells that got into the bloodstream. And so melanoma is very well-known for landing in the liver, and what we call that is metastasizing. So there’s lots of different words for it. Whether we call it stage 4 or advanced or metastatic, it really all means this is typically not curable.>>Or bad.>>Correct.>>Make it a word of one syllable.>>Yeah. Yeah.>>And so you knew the deck was stacked at this point.>>Yes.>>Something else came up for you. You’d heard about some other stuff. Tell us about that.>>Yes, at the time, I was pondering what to do because the therapies out there weren’t very good, and as luck would have it, my wife’s roommate from nursing school is a nurse practitioner in Fairfax, Virginia, working with an oncologist. And she had mentioned to my wife that they had had several patients referred up to the Mass General that were actually doing well with stage 4 melanoma. So that’s what led to me going to that facility for further evaluation.>>Now, these were clinical trials, experimental therapies.>>Yes.>>So, let’s stop for just a moment, again, because people here, “Whoa, there’s an experimental, new therapy. I want to get in on this.”>>Mm-hmm.>>What is experimental therapy? What is the promise?>>Mm-hmm.>>What are the risks?>>So, within the United States, we have a very highly regulated medical approval system for anything new, whether it’s a device or a drug. And so the FDA, the Food and Drug Administration, everyone has a strong feeling either pro or against. But their ultimate job is to make sure that therapies which patients are receiving are safe. And so understandably, there has to be a very long, intensive period of time where these promising therapies are being studied.>>So how do they work? Who gets in a trial? Are you sure if you’re gonna get in the trial you’re gonna get the new therapy? How does that all shake down?>>So, each study is different, and it’s really important to have multiple, ongoing conversations about them, but to give a brief overview, initially when a drug is identified in the lab, it’s first studied in animals. And there, if there seems to be some type of promising data, then it’s brought into a phase one study. A phase one study, the purpose is to find the dose that’s safe in humans. Not necessarily effective, but something that people can tolerate. Then a drug goes on to phase two, and there you’re really looking at “does it work?” And so you’re comparing new drug against old drug or standard of care.>>So that means somebody in a phase two trial, some of those folks are gonna be on the old therapy, some of the folks on the new therapy.>>For the majority of phase two studies, yes. There are some studies where everyone gets the new drug. It depends on the disease. In most cases, we don’t currently use placebos anymore for oncology drugs.>>A placebo is the old sugar pill concept — ineffective, not active drug.>>Correct. Because oncology has, I think, developed the way it has, there typically are some standard-of-care drugs that you can use to compare experimental drugs with kind of the old-fashioned, what we would use right now. So for each study, it’s very different, but the hope — the reason why patients participate in clinical trials is hopefully that they will get that new drug in advance of when it’s approved. It takes years for drugs to make it to an FDA approval where your doctor could just say, “Here you go. We’re gonna give you this drug.”>>But just for the record to be complete, you may get on that new drug. It may not work, and it may be harmful.>>Absolutely.>>This is all part of the full disclosure that you get when you go on a research protocol.>>Yes.>>But you heard about it, and you said, “What have I got to lose”?>>Pretty much.>>Pretty much. So, what happened?>>I went on a phase one clinical trial with an anti-PD-L1 medication, and I can remember the consent form was literally 36 pages long. And being a physician and practiced for as many years as I had, I recognized what every side effect or toxicity mentioned in that consent was, so I knew the gravity of the situation, but I also knew the gravity if it wasn’t treated, so I was more than willing to take a chance. So I started on this protocol, and I received an infusion every three weeks for a year.>>The other thing that’s important is your wife went with you for these interviews up in Boston. Isn’t that right?>>She did.>>Why do you think that was important, other than it’s good to have your wife with you?>>Well, I think emotional support, you know, and knowledge. She needed to have the knowledge of what I was facing, too.>>I always thought it was good to have somebody with a patient because that person was listening and not as emotionally involved as you. I mean, she clearly was emotionally involved, but she can hear more clearly.>>Right.>>Yes?>>Absolutely.>>Lou, good idea?>>Absolutely. And I think it’s important. I mean, there’s also specific guidelines that protect the patients in these trials. So there’s certain things, as you talked about, some of the trials don’t have placebos because it’s felt in international guidelines that there’s certain things that would be more harmful to the patient. So there’s guidelines for that. But it’s also I let my patients know that if they’re gonna get involved in a trial, it’s great if you have benefit, but the over-arching role of you getting involved in the trial is for the benefit of the management of that disease and the benefit of society. ‘Cause you always hear about the successes. You don’t hear about the failures.>>You’re facing a life-and-death moment here.>>Yes.>>With your wife.>>Yes.>>All right. And she’s in our audience here, so we’re gonna talk with her, too. Donna, when you heard this diagnosis for your husband, what was that like? What were you feeling?>>Well, to hear the word cancer is frightening enough, and then you hear stage 4, and just the anxiety is overwhelming.>>I mean, that must have been terrible. It must have been an awful moment.>>It was. You can’t even think rationally. You’re all over the place and trying to decide whether to tell the children or not. So, he didn’t want to, but I said, “We have to. I need to talk to them.”>>These are major life decisions. And then you heard about these clinical trials. You were the one who heard.>>Yes.>>So, when you heard about them, was there a change in the way you looked at this picture, or not?>>I think not until we got to Boston and we actually heard the doctor say, “We have things that can help you.” And he was very positive, and so that gave us a lot of hope right there to move forward. And, in fact, that he responded so quickly gave us even more hope.>>Just looking at you now with a smile on your face, there’s a medical term for what you were going through at that moment. It’s called “whew!”>>Yes. [ Laughter ]>>I looked it up once. It’s in all the textbooks. So, you know, I want to continue this story, but in every episode, “Second Opinion” looks for game changers, medical innovations that are making a difference. So, here’s what’s going on in the area of immunotherapy. ♪♪>>Conventionally, cancer treatment is just mainly based on chemotherapy and radiotherapy and surgery. But our body by nature has actually an even better way to treat cancer. We can actually simply use our own immune system to recognize cancer better and kill cancer better. Tumors sometime become very smart, so even though you infuse many highly educated immune cells into the patient’s body, the cells cannot find tumor very easily. So somehow this T cell has to find their target tumor, otherwise they cannot kill tumor. We have a LED that we made so we can attach this LED at the tumor area. T cell recirculate through the blood vessels, and they happen to see the light and migrate into the tumor area. Something like there, we can shine light and guide their migration to the light. But then they’re changing it. The wavelength’s different.>>Yeah. So which one’s… The green’s recruitment, isn’t it?>>T cells shouldn’t see light. To make them respond to light, we need genetic engineering. To do that, we use a molecule that we got from green algae. You know, those small cells actually has to respond to light for their survival. So we can kind of borrow those light-sensing molecules from different cells and transport them into the T cell. Unlike novel drug, you know, this is very non-invasive way, and I really hope that we can, someday soon, make procedure a little faster so that we can actually test this technology in patient. ♪♪>>So, we’re back. Ronald, you got a terrible diagnosis of a terrible kind of cancer — a melanoma, metastatic. And you then heard about clinical trials, and you went to Boston to see if you can be enrolled in one, and you could. Now, you mentioned it was a PD-L1 that you were given, and it was an infusion. How was that given?>>It was an infusion. Initially it was given over a couple of hours. It was only a 10cc. It was a very small aliquot. But as it became apparent that I was tolerating the infusions, while with no immediate side effects, the infusions were sped up a little bit, so literally over an hour or two I would get the infusion.>>Elizabeth, big picture here. What is immunotherapy? He got a PD-L1. That doesn’t mean much to me, either.>>[ Chuckles ]>>So help us out here.>>Sure. So, immune therapy is a completely new class of cancer treatments in contrast to chemotherapy, which you alluded to. And really what it does, it tries to activate your immune system so that the drug itself is not doing anything directly to the cancer, but instead it’s activating the immune system in order to recognize the tumor. So what PD-1 and PD-L1 are, it stands for “programmed death receptor 1” or “programmed death-ligand 1.”>>I’m not happy with “programmed death” in there.>>Right, but you want it to be there. So, essentially what happens is tumors are able to express this receptor on the surface of the cell, and what happens, when it binds to an immune cell, it prevents the immune cell from recognizing the tumor. So it’s like the cancer has a cloak on.>>The cancer’s being tricky.>>Exactly.>>Okay, so then how do we fix that?>>So the drug that Ronald received put a break in between there, and it allowed the immune cell to go back and recognize the cancer and ultimately, I’m hoping, kill it.>>So that was the plan anyway, that you would allow your immune system to recognize the cancer that it didn’t see before…>>Correct.>>…go in there and chew it up.>>Yes.>>Now, why wasn’t the immune system chewing up cancer before? How did this cancer elude his immune system to begin with? And by the way, are we all getting little cancers all the time and is our immune system keeping us safe?>>We probably are. That’s the truth of it. Over someone’s lifetime, most cancers, most solid tumors are related to aging, and so as we age, the body has more time to accumulate these abnormal cells. The immune system probably is doing that, keeping things in check so they never become clinically relevant. But occasionally, because tumors are tricky, they’re able to devise ways to get around the normal surveillance that the immune system has.>>Want to make a distinction here, Ron. How did it feel while you were getting all of these infusions? I know that chemotherapy is associated with all kinds of horrible side effects — the nausea, the vomiting, the hair loss. How does this compare?>>I can honestly say I had absolutely no side effects the entire time. Nothing.>>Nothing?>>Nothing.>>Lou, you’ve been in practice a long time. Here’s a guy who’s getting therapy for cancer, and he’s not throwing up, his hair’s not falling out.>>Right.>>Pretty impressive.>>It is. This is a very exciting time, especially in primary care. As I was talking with Elizabeth beforehand, a lot of these drugs not only have that dramatic effect with his little side effect, but patients live longer, and not only they live longer — a lot of patients when they get chemotherapy, they may be living longer, but it’s not great living. They’re very debilitated, they’re in bed, they’re sick. Patients five years out with lung cancer, melanoma are riding horses, you know, going to work. I mean, it’s really a remarkable thing to see.>>You know, what I’m hearing over here is something so rare — an oncologist laughing.>>I know. We have great reasons to be happy.>>I mean, this is — no, oncologists in my era before this were like, “This is really bad.”>>Yeah.>>And you’re not saying that.>>No. I mean, in all seriousness, I honestly can’t imagine practicing this field of medicine 20 or 30 years ago. I think, you know, we always are able to provide some benefit to our patients. Even if we can’t make them live longer, we let them know we care. We’re there for them and their families. We hope to manage symptoms. But now to be able to really make a difference in tumors that otherwise, within six months, most people would have passed away, it’s incredibly gratifying.>>It’s very exciting because chemotherapy in the past is more like carpet bombing, you know, in terms of trying to take out the cancer cells. And this is probably getting as close as we can to personalized medicine.>>It is.>>Exciting stuff.>>Absolutely. Right.>>Now, one of the things you read about that you tell patients who are on immune therapy is you’ve got to let folks know you’re on immune therapy and not chemotherapy. Why is that important?>>It’s important to tell people about this because it changes how we manage their side effects. If you know someone’s on chemo and they show up to the emergency room vomiting, you say, “Well, you need to take your anti-nausea medicines.” When someone’s on immune therapy, there’s a whole list of other things that could be causing it, so it’s important to let all the physicians caring for you — emergency, primary care doctors, and subspecialists — know, “I’m not on chemo. I’m on an immune therapy,” which could cause immune activation.>>So, Ronald, I’m guessing things went pretty well.>>Very well.>>Tell me about your experience. What was it like? How did things progress?>>Well, I tolerated the therapy very well. You know, every three weeks we’d have an infusion, and throughout that time, at least initially, after the first six weeks of treatment, I had repeat CT scans of the chest, abdomen, and pelvis. And at that first viewing of those CAT scans, six weeks after starting therapy, the lesions were half the size that they were before.>>Waiting for the results of that CT scan must have been nerve-wracking.>>Worse than that.>>[ Chuckles ] You kept going. What happened?>>Well, the infusions were going very well. I was responding very well, and then six weeks after that, they were half the size again on CAT scans, and six weeks after that, everything was gone.>>Gone?>>Gone.>>For a tumor which previously — I’m getting excited here.>>You should. [ Laughter ]>>Tumor which previously would have killed you…>>Yeah.>>…by that time.>>Yes.>>My goodness. I like being a doctor in the 21st century.>>Not to sound like the wet rag, we’ve seen that before with chemotherapy.>>We have.>>We’ve seen tumors disappear, and it not necessarily means that the cancer is gone or cured.>>Right.>>Well, let me ask you. Do you think your cancer’s cured?>>Two or three years ago, I would have said absolutely not. Now I’m hopeful that’s true because I’m told that in people that receive immunotherapy, that respond as well as I did and have and are this far out from therapy — I’ve not been treated since May of 2013.>>They stopped therapy four years ago.>>Yes.>>And the tumor’s not come back.>>No.>>Now, the word “cure” — [ Applause ] Yeah. That’s amazing. I never thought professionally I would live to see the day where the word “cure” and “metastatic melanoma” were in the same sentence.>>Absolutely.>>Would you use that for him?>>I think as oncologists, we always want to. And I think chances are very good that that is the case. But this is also new. We don’t have people who were treated with these drugs and now are alive 10 years later because the drugs are so new. We certainly hope that’s the case for you, and I think chances are very good. But it’s too soon to say.>>Right. But he got this as part of a research protocol, right? And he had a terrific result.>>Yeah.>>Is it time for this to break out?>>It has.>>Is it time for everybody to get this?>>It has broken out. The number of patients who’ve received these drugs has skyrocketed. There’s now three different PD-L1 inhibitors approved, two PD-1 inhibitors approved. The number of tumor types is just expanding literally by the week.>>So it’s amazing.>>It really is expanding very, very quickly, much more quickly than we’ve seen with any other tumor chain.>>Couple of quick questions before we have to go. If this is such a dramatic improvement, and it’s only available, at least at first, in the big medical centers, what about folks who are far away from those centers? How do they get treated?>>Once drugs have been approved by the FDA, your physician anywhere can use them, whether you live in a rural area or you’re close to an academic center. The big limitation is with clinical trials. So even though Buffalo is not a small city, the trial that you participated in, you had to go to Boston for that. That’s still the case today that larger centers have more trial options.>>Very quickly, he already had metastatic disease, which was one of the reasons he got an experimental therapy. Is this now the standard therapy for people without metastatic disease?>>Not yet. That is still being studied.>>Close?>>Close. I think within the next two years, we’ll probably have good data to say that that is now an approved indication, but we’re not there yet.>>And this is immunotherapy against cancer, but it strikes me that if it’s good against some systemic disease like cancer, this could be expanded — it is being expanded to lots of diseases.>>It likely is. As an oncologist, I keep my eye mostly on the cancer studies.>>Lou, you’re in private practice. You see the whole waterfront. Immune therapy is everywhere.>>It is everywhere. And I think the big thing that’s important, and coming back to the personalized aspect of it, knowing that you have the right fingerprint for this type of cancer, that the therapy work, ’cause some patients will ask, “Blank it, you know, can I get one of those immunotherapies?” And it depends on the fingerprint, correct?>>Correct.>>It depends on those genetic markers to make sure it works.>>I’m gonna ask you, Ronald, as we come to the end of our show, what’s the best thing about having had this therapy other than “I’m here”? What makes you the happiest? What is it giving you?>>Well, obviously it saved my life. Since then, I think it’s — I’m happy to participate in something like this so that other people can be benefited, you know. And when I was first treated for metastatic disease back in, I think it’s June of 2012, there was only one checkpoint inhibitor that the FDA approved. It didn’t really work that well, and it was very toxic. Now I think, as Elizabeth said, there’s five now or something?>>There is five checkpoint inhibitors, and Ipilimumab is what you were talking about — very toxic.>>Very toxic drug, and, you know, when they reviewed that, that was not interesting me because it only worked I believe in 10%, and it was very toxic. You had to be in the hospital and all these other things. I was much more in favor of trying a clinical trial, which was encouraged by the oncologist.>>Let me ask you one thing.>>Yes.>>How great is it for grandpa to still be here?>>Wonderful. Feel great.>>I just thought you’d — I just want to get that on the table. This is what medicine is all about. I am so glad you’re here. I think we can all agree. That was terrific. [ Applause ] You know, Ronald, I want to thank you for sharing your story with us. The panel, of course, I want to thank you for being here, as well. And to end the show today, here’s Ronald’s advice to people who have been diagnosed with advanced cancer.>>My advice to anyone diagnosed with advanced cancer, stage 4, is to try to get to see oncologists that are up to date with the latest therapy, and if they can’t provide that information, go somewhere where you can — if you can. And it’s important to keep a positive attitude because there are so many trials available now for people with advanced disease that are doing very well. In just six months to a year ago, they would not be doing well, so I would say seek second opinions and third opinions if you have to and then make a decision, and then just follow through with it and hope for the best. And if one treatment doesn’t work, potentially they could start you on something different.>>I want to thank all of you in our live studio audience for being here today. It was great to see you. I want to thank you for watching at home, too. Remember, you can get more second opinions and patient stories at our website at secondopinion-tv.org. You can continue the conversation on Facebook and Twitter, where we are live every day with health news. I’m Dr. Peter Salgo, and I’ll see you next time for another “Second Opinion.” [ Applause ] ♪♪ ♪♪ ♪♪ ♪♪>>Behind every heartbeat is a story we can learn from. ♪♪ As we have for over 80 years, Blue Cross and Blue Shield Companies are working to use the knowledge we gain from our members to better the health of not just those we insure, but all Americans. Some call it responsibility. We call it a privilege. “Second Opinion” is funded by Blue Cross Blue Shield.>>”Second Opinion” is produced in conjunction with UR Medicine, part of University of Rochester Medical Center, Rochester, New York.

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