Hear from four cancer veterans about their diagnosis and treatment journeys, immunotherapy, clinical trials, and survivorship. These patient advocates will speak openly about side effects and share helpful tips for communicating with your health care team. They will provide practical information to help you advocate for yourself or a loved one affected by cancer so that you can make informed decisions about your treatment plan. The panel will be moderated by CRI ImmunoAdvocate Stephen Estrada, followed by a live Q&A session.
Tamron Hall: Welcome back to the Cancer Research Institute, 2021 Virtual Immunotherapy Patient Summit. If you’re just tuning in right now, welcome back! Sit back and get ready to learn as we continue our program. I’d like to introduce you now to some amazing people who have faced cancer, our four cancer veterans who are here to share with you their experiences with immunotherapy and what you can expect from participating in a clinical trial. Steven Estrada will moderate what I know will be an inspiring and educational conversation.
Stephen Estrada: Hello, everyone. I’m Stephen Estrada, a stage four colorectal cancer survivor, and I’d like to welcome you to the Patient Perspectives Panel. I was honored to be a part of last year’s discussion, and I was thrilled when I was asked to moderate the discussion. When I was 28, I was diagnosed with stage four colorectal cancer and given one year to live. But thanks to the advances in science and immunotherapy, I’m here today to help share the stories of three other awesome survivors. I’d like to go ahead and jump right in and hope everyone is so we have Mike Blevins, we have Gordon Levine, and we have Sonia Su. Mike, I’d like you to tell a little bit of your story and tell us how you were introduced to immunotherapy.
Mike Blevins: Hello, everybody, my name is Mike Blevins. I was diagnosed with renal cell carcinoma kidney cancer back in March of 2019, had a sharp pain in my side, got taken to the hospital in San Antonio. And with the CT scans and everything, they discovered a tumor on my left kidney and they confirmed it was kidney cancer and immediately wanted to schedule a surgery the very next day to remove the kidney, the tumor, all. So I got on a call with my daughter and my family and my daughter, who is my oldest daughter, Jade, who’s a surgical technician, said, “You know, I talked to my doctors that I work with and all my friends and the medical team, and they said, you know, this is a major major surgery might be best to go ahead and get a second opinion. Don’t just go in there and start removing a major organ without a second opinion.” And everybody was unanimous, they said, “Go to Houston MD Anderson Cancer Center in Houston, Texas”. So that’s what I did. I saw the doctors here and they did the preliminary exam and right away they said, “Yeah, normally that is the standard procedure with the cancer rehab is most likely we’re going to do the same, take the cancer, the tumor and everything, but before we do that, we’d like to do a full body scan” Lucky that I did, because they found that it was already metastasized. You know, it was in my bone, my ribs, the base of my skull, my chest cavity. So then they came to me and they started explaining to me about this immunotherapy and if I wanted to join a clinical trial. So I got on a conference call, a group call with my family, my mother, my brother, my oldest daughter, Jade, and we talked about it, and it was unanimous. Everybody said, “Yeah, let’s do it. You’re at the right place for something like this. MD Anderson is on the cutting edge of technology with these medicines.” My daughter’s the was the convincing factor, she said “Dad, go for it, because clinical trials don’t just help you. What they find out and they discover by treating you is not only going to help you, but it’s information feedback for them that’s going to help hundreds and hundreds of more people.” So, that was a convincing factor. That’s when I was introduced to it and we went for it. You know, so yeah, it was it was pretty good.
Stephen Estrada: So now, Mike, before you join this trial, did you know anything about immunotherapy?
Mike Blevins: Nothing, nothing whatsoever. I knew nothing about cancer immunotherapy. I mean, I had family members in the past with cancer and chemo and all that. It was just a whole scary thing, you know? But when I started researching and started talking to them about immunotherapy, it sounded better and better, you know, almost like the side effects, you know, although there might be some side effects if it wasn’t nothing like what I imagine, like chemo or any other medicines I’ve seen up there, you know?
Stephen Estrada: Every other patient out there who may not know a lot about immunotherapy, which is why CRI work is so important to educate. And on that note, we’re going to be touching on some topics today that I’m going to go ahead and kind of introduce. We’re going to be talking about self-advocacy. We’re going to be talking about side effects. Mike, you mentioned some of that. Sonia, why don’t you go ahead and tell us a little bit of your story and how you got introduced immunotherapy?
Sonia Su: Yeah, sure. Good afternoon, everyone. My name is Sonia. In 2018, I was diagnosed with non-Hodgkin’s lymphoma. I was twenty-four at the time and I was still in grad school. A lot of things going on. Ultimately, I started off with standard chemotherapy regimen, which seemed to be working. But then within a few months, my symptoms came back, I developed new symptoms and unfortunately, I relapsed that same year. So I was on a track to go ahead with a stem cell transplant. But before then, you do have to be in remission. So I underwent more cycles of chemotherapy they call salvage chemotherapy, which sounds really bad, and it was pretty rough at that point, especially after, you know, already so many cycles of the chemo, it really does take a toll on you. Unfortunately, that was not able to keep me in remission. At that point, I did have to seek second opinions and learn about a type of immunotherapy called Car T-cell. The one that I got is called YESCARTA, and essentially it uses your own T cells and genetically modifies it in a lab somewhere. And then they give it back to as mutant T cells, which then know to attack and kill your cancer. That is what saved my life and is why I’m here today.
Stephen Estrada: Wow. So, these mutant cells, did you feel anything as they were being injected into you? What was your experience like with those?
Sonia Su: Great question. It is very much unlike traditional chemotherapy or radiation or surgery in that this tends to be a one and done type of thing. So you do get some preconditioning chemo, but it is pretty light just to make room for your modified T cells. So the actual infusion is, you know, just very uneventful, which is a great thing. It’s just kind of like a typical blood transfusion of your own blood, actually. Depending on the patient, of course. You know, the first few days typically are very uneventful, for me, I didn’t really feel anything other than the side effects from the chemo that I had before. I just felt fine. It wasn’t until day four or five when I started having a fever, and that is part of actually the main side effect that most patients do feel, which is called cytokine release syndrome, which essentially is the response to the Car T cells that are infused. That does become pretty serious, but because my medical team, basically prepped me mentally for that, they basically told me more than half the patients do end up in the ICU for a few days, and that’s totally normal, we have the drugs to combat that and you’ll be OK. So because I went into it knowing that I probably would go into the ICU, when the time came for that, I was like, “OK, I’m ready to go!” So in that sense, you know, the side effects are serious, but they are mostly temporary. So for me, you know, I couldn’t even remember my name. I couldn’t even write down anything. You do have those neurological toxicities and assessments that they do test for every few hours. In the end, after about 11 days in the hospital, two of those in the ICU, I came out of it feeling OK, my energy levels, of course not there yet, but, you know, the side effects do vary, and they are a serious but at the same time, like it’s not like chemo where you do have to go back every couple of weeks or so. So in that way, you know, I was very lucky.
Stephen Estrada: Here you are today to share your story with all these patients, it’s really exciting. One more time, what was the name of your therapy for any patients? That might be curious?
Sonia Su: Yes, it’s called YESCARTA.
Stephen Estrada: Awesome, thank you. Last but certainly not least, my friend Gordon. Gordon, I’d love to hear more about your story and how you got introduced to immunotherapy.
Gordon Levine: Thanks, Stephen. My name is Gordon, I’m in Montreal, Canada, so we’re an international panel today. I really happy to be here. I was I a stage four colon cancer diagnosed seven years ago in 2014. I basically went through several years of surgery, chemo, brief remission and then, like the shampoo commercial, repeat again, more surgery, more chemo and another brief remission. In 2018, I had a recurrence and at this point the cancer had spread into my liver, lung, abdomen and bone, and I had a very painful bone in my right hip, which made it almost impossible to walk. I was able to access a clinical trial where I received immunotherapy in Montreal. I got the drug Keytruda. I had some optimism at the beginning, but ultimately the CT scans showed progression and I was required to exit the trial. At that point, I was basically out of options at home. I was lucky to be able to get a second opinion from Dr. Aaron Miller at UCSD Moores Cancer Center. After meeting with him and performing some tests and looking at the family history, his advice was to try immunotherapy a second time, but this time a combination called IFPI Niveau, also known as Yervoy and Opdivo. I flew down in January 2019. Basically, I was in a wheelchair at that point, after three rounds of treatment, I started to feel better and my scan showed a significant decrease in the tumors. Some of the tumors had actually disappeared completely. By the summer of 2019, we were able to travel back home and see my older daughter, Megan, graduate from college, which was amazing. After that, we were commuting back and forth, every month, flying across the continent to receive the immunotherapy. By the summer of 2020, I have stopped treatment because of adverse side effects, but at that point, basically the cancer was gone, except for a specific, a specific area of the colon that was showing up on the pet scan. After further studies and a colonoscopy, they saw there was a remnant still in the colon. So just this past June, I had surgery. They removed the remainder of my colon and I had a scan at the end of August, and that scan showed no evidence of disease. So after six and a half almost seven years of this roller coaster, I finally reached the point where we all dream of getting to. More importantly than any of that, I feel really good. I’m enjoying being alive, enjoying life, and once again, really happy to be here with everybody at this amazing summit.
Stephen Estrada: Thank you so much for sharing all that. We’re happy to have you here. Let’s kind of move on a little bit and talk about the clinical trial setting. Mike, you were talking earlier about how your family had this big discussion. It was really a group effort as to whether you would enroll or not. Let’s talk a little bit about that. What questions were being raised? What questions do you feel like are important for patients to be asking their family members before enrolling into a clinical trial? Tell us once more, how did you learn about your clinical trial?
Mike Blevins: We first learned about immunotherapy at MD Anderson when we went for the second opinion. Like I said, we get we got on a conference call with myself, my oldest daughter, my brother, my mother and my family. I mean, it’s because I can’t – me personally, it’s a big decision. It’s a tough decision to make alone. So family, you know, they help me out with that. They told us about the first immunotherapy that was almost that, the nivolumab and the AP. So they started telling me about that and the possible side effects that, you know, I really didn’t get no side effects on the first round. I was on the NYBO and the AP for about a year. I think after about nine 9-10 months, the tumor reduced more than half in size. You know, the only side effects I really got was maybe some fatigue in the beginning of the injection. It was just constant communication with the family. They’re like, “How’s everything going? Any side effects?” “No, not really.” You know, the biggest thing is with us it’s like when we heard the word “cancer” come out of the doctor’s mouth with a diagnosis that was a big shock. You know what I’m saying? The only thing that I know of from our family’s past history is like, you know, chemotherapy treatments and stuff like that, which chemo has helped in the past with my family, but you hear about certain side effects, you know what I’m saying? I’m like, “Oh my God, what am I up against?” I’m grateful with this immunotherapy it was nothing like that, nothing at all. I didn’t lose my hair. I didn’t lose a lot of weight. I didn’t get real weak. Thank God, thank God. I mean, I got a little fatigue when I first get the injection. But after about a week or two, that goes away, and like I said, it was amazing. It was amazing. The tumor, it shrunk one half in size. I mean, that speaks for itself, you know?
Stephen Estrada: You know, I keep hearing three. If you say something about the moment when you found out that the tumor had shrunk in one word, I’m going to ask each of you to answer this. What was that moment like when you got that phone call or you read that report that said your tumor has shrunk? One word. What is it, Mike?
Mike Blevins: “Thank you, God.”
Stephen Estrada: You know, I’ll take all those words.
Mike Blevins: Yeah.
Stephen Estrada: Gordon, what about you?
Gordon Levine: Well, I can’t say it in one word, but, you know, when you have essentially a terminal diagnosis that when a doctor phones you and tells you basically that you’re not going to die and that you may even beat this thing, it changes everything. You need to have that hope to keep going on. So I would say if I wanted to summarize it in one word, “hope” would be the word.
Stephen Estrada: I think that’s a great word. Sonya, what about you?
Sonia Su: Mine would definitely be “relief”.
Stephen Estrada: That’s a beautiful word. Mine, I think, would be “indescribable”. So thank you guys for sharing that little moment. You know, there are a lot of benefits to signing up for a clinical trial, and some that might not be quite so apparent. You know, when I signed up for my clinical trial, I, like many of you, wanted to sign up because I wanted to give my body to science. I wanted to help if I wasn’t going to make it through this. Who else could I help down the road? I think it’s important for patients to know that there are other benefits. The attention to detail and care that you receive from your hospital and from your care team is unlike any other. They’re there for you every step of the way. I know clinical trials can be scary to look at, but I think if you have the right care team, everything kind of becomes very easy. As long as you trust them, I think you’re all set. Do you guys have anything to add to a benefit that a clinical trial might have besides obviously the benefits you are all having?
Gordon Levine: I think one thing I would say is people may think clinical trial equals last resort. I think part of what the message we have to give is clinical trial means a chance at getting the right treatment for you because everything is really about personalized treatment. It’s maybe in today’s world with cancer, the clinical trial is the first step to take. Even in Mike’s story, rather than going through what I did years of horrible chemo and multiple surgeries, potentially a clinical trial could be your solution right off the top of the bat. So I think that that kind of perception should definitely be changed.
Stephen Estrada: Yeah, absolutely true. To that point, I only failed one line of treatment before I went into a clinical trial. I knew that if I failed the trial, I could then have all my other options down the road. So that’s something to talk about with your doctor, your care team and your family, of course. Gordon, let’s talk about your immunotherapy that you’ve received off-label. Is that right? Can you tell us a little bit about how that came to be and being a self-advocate?
Gordon Levine: So when I essentially “failed the clinical trial”, I was no longer qualified to receive immunotherapy via clinical trial, certainly not in Canada. In the US, the doctors have a little more leeway to prescribe medication that is outside, let’s say, an FDA approval. In my situation, I don’t fit exactly within clinical trial parameters or even FDA parameters, but I have enough biomarkers that gave the doctor reason to believe that this treatment could work for me. This is the lifesaver that I received because it would be no other way for me to access the drugs other than this off-label and off label just means that a doctor is he or she feel that it is appropriate to give you a drug that you don’t fit within an approval. It could be a repurposed drug that’s being used for one type of cancer that they sometimes use for a different type of cancer. It means that even if you, like I did, fail all the standard chemo, technically fail a clinical trial, there are still options available and accessible if you go and find them. I guess that’s the self-advocacy part of it. You might have to travel three thousand miles to get it, but the treatments could be there if you go looking for them.
Stephen Estrada: Really quick, can you just go over how someone might talk to their doctor about an off-label drug?
Gordon Levine: I think that it’s really a discussion that has to be between you and your doctor. Part of my experience in getting the second opinion was a very long discussion. I’m a lawyer by training and I’m always skeptical understanding what is the rationale behind going outside of the box in my case. In my personal experience, there was a very persuasive rationale for me to try this treatment. Part of it was – it’s the reason why sometimes you need to get a second or third or fourth opinion. This doctor felt that I didn’t fail the clinical trial, that I had partial benefit. The difference is the whole story because a partial benefit gives a clue that maybe combining two drugs together might give you a better benefit. So, I was faced with a with a doctor here who was very negative. “You failed. You’ll never be able to have immunotherapy. It doesn’t work for you” versus somebody who says, “You partially responded, Let’s try to think outside the box and give it another shot.” I think that goes with the process of you finding the hospital, finding the doctor, that makes you comfortable in proceeding with the treatment that they’re recommending.
Stephen Estrada: Sure, and that goes back to that whole trust in your care team and really, really opening that channel of communication. Sonia, when you were going through your car T cell therapy, what were you doing as a self-advocate? I mean, you sound like you were so ready to do it and you were very much involved in the decision-making process. What was that like for you?
Sonia Su: Thank you for asking. I should preface that I did switch care teams in the middle of this before Car T, and that decision was made largely because of just negative experiences of course, those first two lines not working, and also the limitations of the first hospital. At the time, my CAR T-cell had only been approved for a little over a year at that point. That First hospital did not actually offer it to patients, and had I not known anything about it, I would have continued with the first hospital and their plan of essentially more chemo, more radiation, in hopes of becoming in remission for the transplant. So it seemed like so much added on top of each other to the point where I felt like I had no choice but to choose CAR T-cell or at least any other option, really. So because of that, I learned that just down the street, luckily in Maryland, University of Maryland, they happened to have been, you know, working on just maybe a dozen or so patients at that point with CAR T cell, so just knowing that, you know, that care team has some experience just made me feel reassured, and at the same time, they made sure that I went into it again with the expectations of the side effects and that, yes, there would be essentially a 50/50 chance of it working, but again, that point was just anything. I would just take anything. So there was really no other way, at least in my eyes, and so I just felt really reassured that, you know, I was eligible to receive it and that I was in good hands. So I would in that way, I felt like just advocating for myself and just telling my original team that, no, I’m going to go with this new therapy and this new hospital, this new therapy. It definitely empowered me and made me realize like I had this choice all along. Like from the beginning, I needed to really, you know, take more power in my own hands while listening to the opinions of various doctors.
Stephen Estrada: We love empowered patients and empowered patients are educated patients, so it’s great that you really took advantage of the information that was out there to make your final decision to kind of parallel your own story. I actually got rid of my first care team as well because much like yours, they just wanted to send me down one path that I didn’t agree with. I thought that there was something a little about my cancer, as it turns out, there was, and my second care team mined that out for me. So I think patients should know to not be scared to switch or at least get a second opinion with their care team. I think every doctor would be excited for you to go get a second opinion. At least that’s what I’ve always heard. I would hope so because we’re all on the same team here at this point. We keep talking about side effects, so Sonia, let’s hear a little bit more about your side effects because your treatment really is not a lot of people know about it. So let’s talk about what was it, the cytokine storm?
Sonia Su: Basically, it’s a storm cytokine release or CRI? Yeah, when you first hear about it, it can be pretty terrifying, and that’s what really is part of the whole cancer experience. Honestly, it’s just one terrifying thing after another. Of course, at that point it was FDA- approved. It was no longer in a clinical trials, at least that particular one. There’s various CAR T cells, and they’re actually in clinical trials right now for other cancers, but that one, they realize that even if you do experience these symptoms of, essentially these neurological toxicities that make you forget who you are or where you are and everything about you. So actually those two days in the ICU, I don’t really remember. Some people do remember. Some people completely forget those two days I was kind of in the middle. I remember just being very insistent when they did test me and they asked me, you know who I was, where I went to high school or what or things like that. I remember just being very insistent on completely wrong answers. I think my mom, who was there with me, just found it very humorous, but at the same time, of course, scary that suddenly your daughter just basically lost her mind. Again, those side effects were temporary. Otherwise, after those two days, it was really just fatigue, and I think that is definitely normal and expected of any kind of treatments, but especially this one where, you know, it does take a toll on you and your T-cells are working so hard to kill your cancer cells. Otherwise, other than those days in the hospital of, you know, my mind being in crazy places for two days and then fatigue and, you know, needing just mental and physical support, I found myself in the last few days of the hospital actually just wanting to get out. I felt good enough and I felt like, “Hey, I just want to go home for recovery.” They treat it very much like a bone marrow transplant. You’re actually in the same unit, at least where I was treated. So they do take very close and careful attention where even the visitors every hospital comes in with a mask and those are pre-pandemic. So you can imagine how crazy it seemed at the time that like even your family members, anyone who stepped in and had to go through double doors had to put on a mask just to make sure because, you know, similar to transplants, your immune system is down to zero, basically, and they need to be very mindful of that, but otherwise, symptoms generally are temporary. You do feel fatigued, but in the end, you know you don’t lose your hair from CAR-T cells specifically. Just feeling good right now and just happy that it was able to work.
Stephen Estrada: That was my next question for you. Like, how are you today, you say you’re feeling all right, do you have any lingering side effects from this therapy, anything at all?
Sonia Su: Not that I know of. Fortunately, I think that’s also the benefit of being young, I guess, I don’t know if that’s a point of being young and diagnosed with cancer. I of course, as with anyone who’s been diagnosed with cancer and gone through all of this, you do have those fears, and I think that is a mental side effect of just worrying about every single health condition potentially being cancer. If you were not a hypochondriac before, you will become one after being diagnosed. At least for me, every chest pain, everything just makes me worry. What I find solace in is just knowing that I do have a great care team and I do have regular health checks and scans. So just keeping that all in check and knowing that there’s also a great support system with me.
Stephen Estrada: That’s awesome. Thank you so much. Mike, what about you? Did you have any major side effects that you would like to tell everyone about during your immunotherapy treatment?
Mike Blevins: The first the first treatments I was on, like the NYBO and the and the AP, not really, a little fatigued. Then we went through Pembroke and now I’m back on Nebo and a new drug called DF6002. And this is the one that and I’m going on. I’m coming up on my three years fighting this cancer or living with this cancer, and all this time, not really no side effects. This time I’m getting a few side effects the monthly injection. When I get the injection first, get it. The first two or three days is some fever, fatigue and the body aches, you know, so. And then after the first week, all that goes away until the next round next month. So it’s not really that bad, you know? I mean, I was fortunate the first two and a half years that I really didn’t get no side effects. This time around, very small side effects, but only for the first two or three days. And they’re manageable. It’s not like I’m passed out in bed or nothing. It’s just I’m a little feverish, a little fatigued. I just got to rest a little more for two or three days and then I’m on with my life. That’s it, you know? Other than that, that’s the only side of life.
Stephen Estrada: So that’s great. It sounds like you’re able to live a real normal life. I think it’s important to put in here right now that any patient on any type of treatment, be it immunotherapy or chemotherapy, needs to be very open and honest about their side effects. It can be a little taxing, a little exhausting to go over these things over and over, but your care team is there to take care of you, so it’s always just important to make a journal of your side effects or report them to your loved ones. That way, we can make sure that it’s taken care of. Gordon, what is your experience with cancer with the immunotherapy side effects? It’s been interesting for you this past year coping with the long-term side effects, right?
Gordon Levine: I would say it went in three phases, the first phase, the pain from the bone met went crazy and they have to really up the OxyContin I was on. In hindsight, it was the treatment working because the treatment is inflammatory and I was feeling the effects of it. Then in the next phase, the side effects were pretty mild, some fatigue, a bit of a light rash and a little bit of itching, which is sort of a normal autoimmune type side effects you get from immunotherapy, but really nothing significant. For me, it was more the accumulation of treatment because I responded so strongly. You’ve got the killer T-cells going everywhere. They started to attack my adrenal gland. I didn’t realize it. I actually ended up in the ICU. Not planned, like Sonia, or expected. But here’s the point: you need to really be at a proper cancer center when you receive these treatments, because when I present it to the hospital, their instinct was septic shock, but in reality, I was suffering from adrenal crisis, and the treatment is usually for any kind of autoimmune adverse effect steroids. As soon as they put me on the steroids within a few hours, I was totally back to normal. I mean, I was in the ICU for two days, but I was walking in the hallway. I was not a typical ICU patient. For me, it turns out that I have a permanent damage to my adrenal gland, which means I have to take a low dose of steroid for life, and I have an endocrinologist that helps to have the dosage. But the flip side is, I’m feeling great. I don’t have pain. I don’t have any of the other side effects right now other than the fact that I have to take a pill twice a day and you know, the ostomy I have from my surgery. Otherwise, I feel completely normal right now. So to me, yes, I did have an adverse effect, but I do think that it was correlated with the strong response that my body had to the immunotherapy and sometimes with, you know, fighting cancer with these harsh treatments, they sometimes they kill the cancer and they’re still active in the body. So you need to have really top care at a top cancer center, making sure that they are watching you and keeping you safe when you go through these treatments.
Stephen Estrada: Absolutely. You want that experience behind your back at that point. Let’s talk about one question each of you would recommend to patients who are going to approach their doctor about immunotherapy. Mike, what would you suggest they ask?
Mike Blevins: Well, the big one is, of course, the side effects. What are the side effects, how successful is this treatment been? You know, like with me, I could have gone through chemotherapy when I had the choice chemotherapy, immunotherapy, clinical trial with immunotherapy. You just asked the question, “Well, what is the success rate in this and what’s the success rate in this?”, “Would have been the side effects here and there?” I learned with renal cell, a lot of patient’s chemotherapy didn’t do very well, but immunotherapy did amazing with, you know, and that was the information I was getting, you know, OK, what are the side effects, of course, you know, and it just, yeah, the main thing is side effects, success rates.
Stephen Estrada: It’s so important to drill down, so the success rates, especially in patients who are just like you. Sonia, what about you? What would you suggest a patient ask?
Sonia Su: I would ask whether they even offer it and what they know about immunotherapy for your specific cancer, because of my own experience of my care team not even being able to offer it and then having to learn from another hospital where I could actually get it done if I needed it. Just learn as much as you can about how and where it’s offered and whether they have experience doing that. Yeah, that would be my main one.
Stephen Estrada: Great, and Gordon, what about you?
Gordon Levine; I think part of being an empowered patient is data and, the best data you can get today is next generation sequencing. So you need to know, do they have the capability? Will they get it? Because based upon what data they’re going to get from the sequencing, that is going to give you a lot of information as to is immunotherapy a viable option for you versus other treatments. So in order for you to participate in that decision, you need to have access to the data and you need to you need to demand it from your caretaker.
Stephen Estrada: You touched on something very interesting, you said, will this drug help me basically? I know you are kind of a proponent for genomic sequencing. Can you go into that just a little bit for the patients out there?
Gordon Levine: So in my particular case, without getting into too much detail, the preliminary analysis of my tumor indicated that I would not be a good candidate for immunotherapy. Nevertheless, my team here, locally, put me in the clinical trial, but they had the bias that it was probably not going to work. And when they saw progression, they concluded, “Oh, that’s what we thought in the first place. You’re not a good candidate.” When I went for the second opinion, Dr. Miller helped me to get next generation sequencing not only of my tumor, but of my blood, because the blood gives you the germline, or inherited mutations that you might have. Based upon what he saw from that report, he found mutations that didn’t come up in the other analysis, and it was on the basis of those mutations that he felt that immunotherapy would be a viable option for me. So if I had not had that sequencing done and had it analyzed by somebody pretty smart, I probably would have concurred with my team here that OK, immunotherapy is not going to work, and in that case, I would not be here today on this panel talking. So it’s relatively new, but it’s becoming more and more available. I believe it’s being covered more and more by insurance. Even some of the companies will subsidize it because they want the data. So it’s something that I really advise people that reach out to me for advice. Find out what your genetic makeup is because that’s going to guide your options very strongly.
Stephen Estrada: Right, I agree wholeheartedly. You know, we’ve been getting a lot of comments from our audience, so I’m going to read some of them and just get your reaction to what they’re saying. We have the comment, “I’m almost a five-year cancer survivor. I’m very sensitive and even sad when people say positive things to me like, “you beat cancer!” Is that normal for a cancer survivor?”
Sonia Su: Yes. One hundred percent.
Gordon Levine: I mean, even the word. The word “survivor” for us, kind of stage 4, long-term people, it’s a mixed kind of term, I think.
Stephen Estrada: Yeah, we’re all survivors from the day we’re born, so, you know, we only got a couple of minutes left here, so, one patient wants to know, “Did any of you keep a side effect diary? Sonia, did you?”
Sonia Su: It was less of a diary and more of a blog. I did keep a blog, it’s public, but it was a way for me to log my daily experiences, not necessarily all of my side effects, I think it definitely is beneficial. I think any way for you to express yourself, whether privately or even publicly, to whoever cares, then is always going to be able to help you process everything.
Stephen Estrada: Right, and it’s so important these patients need to be using these diaries to document the side effects as they occur. So the treating team knows what’s going on with the patient. It’s so easy to have these side effects and then kind of forget about them. I know that I would have many, and when my doctor would ask, “Oh, did you have headaches? Did you have a stomachache?” I think back, and I say no, but I had it all week, so I know that a diary would definitely help, especially those like myself with chemo brain. Let’s talk about being in a trial before FDA approval. Was it scary to join a clinical trial? Mike?
Mike Blevins: Yes, the answer is yes, but I like I go back to like what Gordon was saying, that a lot of people think that’s the last resort. I agree with Gordon that it really isn’t, you know, it’s like when I got on this call, and this is why I got on the call of my family, it’s such a hard decision. It’s scary. It’s scary. When my family gave me their feedback was pretty much what I was feeling. This is the cutting edge. That’s how I look at it. This is the cutting-edge medicine that’s out there. And I was at a great facility. I’m still in a great facility and it is scary, but it shouldn’t be. I agree with Gordon that it shouldn’t be a last resort like, “Oh my God, this is my last resort.” In fact, it is true. It should be one of your first resorts. I think it is the newest medicine out there, the latest medicine out there, and all three of us can speak on how it’s been working so far. You know,
Stephen Estrada: So with the last minute and a half we have left, I’d like you guys to think back to when you were diagnosed. Let’s say that you are talking to yourself and you still know what you know now. What advice would you give to your pre-diagnosis self? Sonia.
Sonia Su: That is such a great question, because it just means that so much that’s happened since diagnosis, and we’ve somehow all managed to somehow come out of it. So. But at the same time, I think there are definitely things like just to tell myself there is always hope and that you’re never alone.
Stephen Estrada: I love that. Gordon, what’s the one thing you would tell yourself?
Gordon Levine: I think the big mistake people make is they go on the internet and look at five-year survival rates. I think we’ve all learned you take one day at a time. You are grateful for every day that you’re alive and we always say, stay alive another day, and that’s already a victory. So try not to look too far ahead. Try to take it a day at a time right from the start.
Stephen Estrada: I like it, don’t look too far ahead. Have hope. Mike, what do you have to add?
Mike Blevins: Well, you’re a survivor. You are a survivor. Keep moving forward one day at a time. That’s perfect wording right there. I mean, they don’t get no better than that. You’re going to be just fine. You know,
Stephen Estrada: I love that, that’s a great note to end on. You’re going to be just fine. I’d like to thank CRI and our three patients here for this awesome discussion. It’s been enlightening, and I hope all the patients out there learned something. I know we had a lot of questions come in. I believe we’re going to get those answered and maybe posted. Take care of yourself and take care of each other. It’s been an honor to be here and thank you. Have a great evening.