What is the practical impact on daily life after cancer diagnosis? How can patients become informed decision-makers and advocates in their treatment journeys? At the 2020 CRI Virtual Immunotherapy Patient Summit, we invited three CRI ImmunoAdvocates—cancer veterans treated with immunotherapy—to share their experiences with cancer, immunotherapy, health care, and support.
Dr. Ezra Cohen, Chief of the Division of Hematology‐Oncology at UC San Diego Moores Cancer Center and Co‐Director of the San Diego Center for Precision Immunotherapy, moderated the discussion with Alan Kaufman, Karen Peterson, and Stephen Estrada about immunotherapy, clinical trials, and self-advocacy.
Karen Peterson and Stephen Estrada, respectively breast cancer and colorectal cancer veterans and advocates, discussed what it was like to research and enroll in a clinical trial. Both learned about clinical trials through a second opinion and emphasized the importance of self-advocacy and empowerment through education.
Karen explained that in order for her to make a decision about whether or not to enroll in a clinical trial, it was “important to have the tools to make the science-based decision and not emotional decision.” She added, “I think for me, the empowerment came with becoming very educated about resources and becoming really educated about the latest cancer treatment in regard to triple negative breast cancer so that I can have that information.” Stephen similarly advised patients and caregivers in the audience to “go armed with a lot of questions…. Knowledge is power.”
Dr. Cohen pointed to the importance of communicating opening with your health care team throughout immunotherapy to help identify and treat side effects early.
The conversation then shifted to questions and issues relating to survivorship. In response to an attendee question about coping with fear of cancer reoccurrence, Stephen explained that “Cancer never truly leaves your mind, even if it leaves your body.” Alan, a melanoma veteran, agreed, adding that caregivers played a very important role in providing encouragement and emotional support.
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Immunotherapy Patient Perspectives Session Transcript
Tamron Hall: Welcome back. If you're just joining in right now, welcome. Please relax in your comfiest seat and join us as we continue our program. Now, I want to introduce you to some incredible people who've faced cancer. Stephen Estrada, Alan Kaufman, and Karen Peterson are three cancer veterans who are here to tell you what it's like to enroll in a cancer immunotherapy clinical trial. Dr. Ezra Cohen is back to moderate what I know will be an inspiring and educational conversation. As a reminder, please put your questions and comments in the Q and A box. Let's get to it. Welcome back, Dr. Cohen, and hello Karen, Allan, and Stephen.
Dr. Ezra Cohen: Good afternoon. Good morning, everybody. Welcome to the next session. This is the patient panel now on clinical trials. Once again, I'm Dr. Cohen at University of California, San Diego, where I am the co-director of the San Diego Center for Precision Immunotherapy and the Division Chief of Hematology Oncology. With me today are three patients, who in one form or another have participated in immunotherapy and they're going to share their experience with us. What I will do is, I will let them each introduce themselves and then we'll get started with discussion. Alan, do you want to start?
Alan: Sure. Thank you, Dr. Cohen. Hi everybody. And thank you CRI for having me today. I'm Alan Kaufman. In June 2017, I was diagnosed with advanced stage four metastatic melanoma. I had five tumors in my brain and one in my lung. I endured two back-to-back brain surgeries that summer followed by LINAC and Gamma Knife radiation, and then radiation to my lung last summer. But in July 2017, I began something called immunotherapy. I had never heard of the word before. I couldn't even pronounce it. I started with nivolumab and it'd be ipilimumab and then in September 2017, went on [inaudible] only. Two and a half years later this year, in January, I went into remission and I feel fantastic.
Dr. Ezra Cohen: Thanks, Alan. And we'll get back to certain elements of your story in just a minute. Let me move to Karen. Please tell us about you and a little bit about your story.
Karen: Hi, my name is Karen Peterson. I live in New York City in Harlem and January of 2015, I was diagnosed with stage one, triple negative breast cancer. I went through the standard treatment, which was a lumpectomy, a couple of rounds of chemo and then I had a voluntary mastectomy. Fast-forward to 2017 and at my wellness checkup, they discovered that there was something wrong and I went through a biopsy and then found my way into a clinical trial, which I was really happy about. It was immunotherapy only. I started the trial in July 2017 and in September 2017, I got my first scan back and it showed that there was a 72% reduction in my lesions. So I was really happy about that. And so I've been off the trial for about a year and a half now, and I've been deemed a complete responder and I'm really happy about that.
Dr. Ezra Cohen: That's wonderful. And our third panelist is Stephen. Stephen, please introduce yourself. Tell us a little bit about yourself.
Stephen: Yeah, thank you. My name is Stephen Estrada and when I was 28, back in 2014, I was diagnosed with stage four inoperable colorectal cancer, as well as Lynch syndrome that caused the cancer. I went through standard of care. I did the chemo and the surgeries and nothing was working. I was given about a year to live and I decided that was a bunch of nonsense. So I did a lot of my own research and stumbled upon immunotherapy and what that meant for people like me and I'd like to say, people with Lynch. So I entered a clinical trial back in 2015, and I actually just exited the trial this last November. So, I spent quite a bit of time on it and like Karen, I was also deemed a complete responder. So it's been really a fantastic journey and I'm honored to be here today.
Dr. Ezra Cohen: Thanks Stephen. So obviously it sounds like all three of you have participated in some sort of immunotherapy, one way or another. You've told us a little bit about when. Tell us, how did you learn about immunotherapy? How did it come into your treatment plan?
Karen: I learned about immunotherapy through my second opinion. My original oncology team did not value my voice and they didn't value the thought that I wanted to make decisions that were science-based, that were factual based. So I divorced my original team and I sought out a second opinion who indicated that I had a lot of fighter cells, a lot of tumor infiltrating lymphocytes. And she said to me, "You know what, you might do well on immunotherapy." So at that moment, I said to myself, "Okay, I've got to follow that breadcrumb and move forward." And that's what I did.
Dr. Ezra Cohen: So you really were your own advocate. You said, "I need to find out more." Alan, you mentioned you hadn't even heard about immunotherapy, couldn't even pronounce it. So tell us about how you found out about it.
Alan: Prior to the brain surgeries, my neurosurgeon came to my room. I was hospitalized for 18 days and he sat down on my bed and he described the follow-up after brain surgeries. Obviously, with the tumor in my lung, brain surgeries weren't going to cure me. He mentioned immunotherapy. My wife, Susan who's also a cancer survivor, was listening closely and she took notes. After leaving the hospital, when I met with my lead oncologist, he talked at great length about immunotherapy. At that point, me still being a little confused from brain surgeries, accepted that this was the road to take. And that fall, I actually attended my first CRI Patient Summit in New York City, and it was very comforting to me to hear from doctors, researchers, and fellow patients, how wonderful and effective immunotherapy was. So I was educating myself, avoiding the internet when I could, getting misinformation and gradually accepting my situation and running with it.
Dr. Ezra Cohen: Wonderful. And Stephen, you told us your cancer is associated with a genetic syndrome, Lynch syndrome. How did you find out about immunotherapy?
Stephen: A lot like Karen. I had to research on my own and figure out what was going on in my own body to save my own life. My original oncologist really didn't want to hear anything about clinical trials. She treated me like a very textbook case of colorectal cancer, and I knew that just wasn't the case. So I fired her or divorced her, whatever you want to call it and found someone else that I thought could serve me better. And that's where I really stepped into the role of being myself, my own advocate for my own health. So it was through that second opinion, really, that the game plan was set. The papers were signed and I was on my way into that clinical trial.
Dr. Ezra Cohen: And Stephen, you told us, I think if I heard you correctly, that you had a complete response. How did you know you were responding?
Stephen: So originally back at the very first dose, and I think I went through 70 something doses when they were dripping the drug into my body that very first round, about an hour and a half in, I was overcome with this really tremendous pain at the tumor site. I was doubled over, kind of begging for something to help. So they gave me a lot of morphine. I went home that night and this tumor site... I was just saying the tumor is pissed off at me, so I knew something was happening. But you could actually hold your hand on my abdomen where the tumor was. And I almost feel it throbbing. So I knew something in my body was different. Chemo had never done anything like this. That night I slept for about, I think it was 22 hours straight. And when I woke up, I opened my door and I remember seeing my husband and saying, "It's working. I feel well." And that was the first time I could say I felt well in over a year. So I knew it was working early on. It was pretty incredible.
Dr. Ezra Cohen: That is, that's pretty amazing. Karen, you also, I think you also said you had a complete response. Tell us how you were responding.
Karen: I started the trial in July 2017, and on my very first dose I had two agents. One was a IO2 and one was a PD-1 inhibitor, and one was helping my fighter cells, the bunch of fighter cells that I had identified with cancer and the PD-1 sort of helped take the cloak off so the fighter cells could identify the cancer cells and kill them. And so it was a feeling of, "Okay, I've got flu-like symptoms. I'm feeling a little sluggish and a little fatigue and you know what, this might be working because I feel like my immune system is going through a metamorphosis. And eight weeks later, on my very first scan, the principal investigator revealed that I had a 72% reduction in my lesions so I was more than happy. I was ecstatic. I felt like all the hard work and all the advocacy paid off.
Dr. Ezra Cohen: Yeah. It's an incredible feeling, I'm sure. And Allen, tell us about how you knew you were responding.
Alan: I'm a runner and every year I would do the New York City Marathon. In 2017, I sat out because I just had the brain surgeries and I was just getting back on my feet. But I started... My goal was to do the 2018 New York City Marathon and the fact I was able to get up every morning with energy, I felt great, I was always out there walking for hours on end, was some indication to me that I was improving, that I was responding. And my doctors have always agreed to that. There is a correlation between physical fitness, mental health, and the response to immunotherapy. The tumor in my lung took a little longer to shrink, but a CT scan four months after I began immunotherapy indicated that that was getting smaller too. And I felt really good. I had this feeling of competence. I think, as a cancer patient, you kind of know where you're going with things. And I knew I was moving in the positive direction.
Dr. Ezra Cohen: Yeah. You just had that healthier feeling.
Dr. Ezra Cohen: And Karen and Stephen, you mentioned that you received immunotherapy as part of clinical trials. Tell us, what kind of feelings you had? Fears, if any, about going into a clinical trial?
Karen: What fears did I have going into a clinical trial? I just want to make sure that I had a confident team, a well-run team that was willing to answer any questions that I had about safety and oversight. And I was pretty lucky that I had that. I felt very supported. So I really didn't have a lot of feelings of anxiety. I was just really concerned about whether or not the drug was actually going to work, but I had a really well-run team, a lot of support and that was really important to me.
Dr. Ezra Cohen: Stephen, what about your clinical trials?
Stephen: At that point in my whole journey, I really thought that I was dying and I thought I wasn't going to be around much longer. So the fear factor was kind of taken out of my experience as well. I really wanted to leave some sort of legacy that if I wasn't around, people would say, "Hey, he tried everything he could and he donated his self to further the cause." I remember one night being up at 3:00 AM and emailing my oncologist before signing up for the trial. And I said, "I'm having a pretty hard time. I don't know anything about this drug. I don't know anything about the side effects. What would you do?" And he emailed me back about 10 minutes later and said, "If you were my son, you'd be on this trial." And so I knew at that moment that any fears I had really should be pushed to the back and I should just trust my doctor and I'm so grateful that I did.
Dr. Ezra Cohen: And from what both of you have told us, clearly that sense of self-advocacy, that sense of wanting to find out more, I think played a large role in your participation and your course of treatment. And again, something I encourage patients to do all the time. All three of you have been on immunotherapy. You've obviously had multiple discussions with your physicians asking questions along the way, what advice would you give to people who are tuning in? Let's start with you, Alan, for patients who are just starting that journey. How do you approach a conversation with your doctor? What questions should you be asking?
Alan: Well, the first thing I learned, as I mentioned earlier, avoid Dr. Google. Stay off the internet because information and research changes almost daily. But go armed with questions, advocate for yourself, go with the list, keep a log. Doctors are wonderful, but you're not their only patient. Keep track of your treatments, when your next scan's going to be. Can I take vitamins during my immunotherapy? Can I get a flu shot? Questions, questions, questions, and keep that log and refer back to it. And also, I would say, make friends with other people where you're being treated, physician assistants, nurses, receptionists. Your doctor isn't always going to be available to answer your call, but you want somebody there that you can reach if you have a question, but it's always about self-advocacy and navigation.
Dr. Ezra Cohen: Yeah, absolutely. And Stephen what do you recommend?
Stephen: So, I took a different approach. Dr. Google was kind of my friend, but I'm someone who wanted to know my disease and really know what was Lynch syndrome and what was colorectal cancer because I had no idea at that point. But I agree with Alan that, go armed with a lot of questions. Know as much as you're comfortable knowing. I work in the advocacy space now and I get to see patients every day, and I find that there's a pattern of success in the ones who take an active role in their treatment path, the ones who have educated conversations with their doctors, the ones who don't just go with the flow, because this is cancer and sometimes you have to think outside of the box. So I think that that's my advice.
Dr. Ezra Cohen: Yeah, absolutely. And Karen, I want to hear your advice and what you recommend asking, but also I know that you do quite a bit of advocacy for others, including clinical trials in the African-American community. So, please give us your advice and also tell us about that.
Karen: I think it's really important to understand that cancer is such an individual experience and it's not a one size fit all. And so in order to make a decision on whether or not I wanted to go into a clinical trial, it was a lot of work went into it and I had to have the tools. And it was important to have the tools to make the science-based decision and not emotional decision. So I had to have a CT scan. I had to have a biopsy. I had to have genetic testing. I had to have genomic testing to figure out if I have mutations that would give me the information that I needed to move forward and point myself in the right direction. So you have to have a lot of information in order to be able to make a really good informed choice about your treatment plan.
And in regards to the work that I do in the African-American community, I sit on several steering committees with pharmaceutical companies in regards to how to build a better trial for triple negative breast cancer patients. And it's very important for the pharmaceutical company in research just to hear from patients and their perspective on how to make the trial user-friendly. So there are a lot of things that come into play that need to all work together in order for the trial to work out fine, and someone to stay in it. So something as simple as having a licensed clinical social worker at the patient's disposal or having a massage therapist or having someone to be able to handle the fact that you lost your health insurance and somebody in the business office who can handle that transition to get new insurance or the fact that you know what, you have to be reimbursed. So how do you handle reimbursements and how do you get meals and how do you get transportation and parking and all of those things have to work together.
And a lot of times when you're in... The sites are specific and they're individuals so sometimes funding, sometimes some of these things, the little nuances that make trials user-friendly are left out and I'm the patient voice that says, "Hey, wait a minute. We need some of those things, hello, in order to be able to feel comfortable and to be able to participate in the clinical trial.”
Dr. Ezra Cohen: Yeah, absolutely. I write a lot of clinical trials, but those practical things, those other aspects are... sometimes we don't appreciate them, to be quite honest. So, so important to have that perspective. The first question, let's open it now to the audience for questions. And please feel free to ask questions of the panelists. We've got about 12 minutes. And the first question comes in around side effects. Did you have side effects on treatment? Did you expect the side effects and how were they managed? Stephen, let's start with you. Did you have side effects? What happened? Tell us a little bit about it.
Stephen: I was very fortunate. I didn't have many side effects. I think the biggest one that stood out was fatigue and it was really day of infusion. So every time I had this drug, which was once every three weeks, the rest of that day was pretty much spent laying around, eating, which was a nice contrast to chemo. There were other things like kind of colitis type side effects that would hospitalize me for a day. But other than that, things were pretty smooth. I had one hiccup right towards the end that involved kind of a weakening of a flood structure. And so that was not great, but other than that, everything was smooth sailing. But I think that it's important to note that that's not everybody's case with immunotherapy and it really is important to understand the side effects, the potential side effects and what you would do if you encounter any of them. So, having that honest conversation with your provider is key.
Dr. Ezra Cohen: Yeah, absolutely. Stephen. I was going to say that, as part of a clinical trial, you get an informed consent document and that informed consent document basically lists every side effect that's ever happened to anyone or anything. No one individual gets all those side effects, but at the same time, you need to know what's possible. And so it is an important conversation. Let's move to you, Alan. And then to Karen. Alan, any side effects and tell us about your experience?
Alan: Well, the good news was I didn't have the side effects I expected. My stomach always felt great. I had an appetite, I had energy, but I had a ferocious itching from the time I started to the time I concluded immunotherapy. It was awful and there was nothing we could do about it. We tried off-label use of Gabapentin, anti-histamines. I even came up with an invention that I could take anti-itch cream to get to my back when my wife, Susan, wasn't around to rub it in. But in my mind, I always thought, if that was the worst thing, the worst side effect I would have from all the possible side effects from the immunotherapy, I consider myself a very lucky man.
Dr. Ezra Cohen: And Karen, what about you?
Karen: I definitely had some side effects. At the very beginning I had flu-like symptoms and extreme fatigue for 72 hours. So I'd get my immunotherapy treatments and an infusion, the two drugs, every three weeks. So the first 72 hours after infusion, I'd be tired and have fatigue or I'd have these flu-like symptoms and then three days later it was like, I pop up like a Jack in the box and I'd be good. And then later on in the trial in about the seventh to eighth month, I started to get arthritic pain. And that happened between the seventh and the tenth month. So it was again for 72 hours, I'd have this arthritic pain. I'd have these flu-like symptoms and eventually I was taken off one of the immunotherapy drugs and was left on the one. And that went smooth. There was no problems at all.
It was a huge difference and my quality of life improved. So I was pretty happy about that, but I was always in contact with my principal investigator and the team, and they always were very informed about what we should do if I did have side effects. So that was important.
Dr. Ezra Cohen: Yeah. And let me emphasize a point that all three of you brought up and that is sharing these experiences with your team. As a person who treats patients on immunotherapy, it's very important for us to know what side effects are happening, what is going on. Sometimes I think from the patient's perspective, and I've heard this from patients, they were afraid to tell you what side effects they're having, because they're afraid you may take them off a drug that's working. That is an absolute last resort. We want to know the side effects because the earlier we know about a side effect, the better we can manage it. In fact, the more likely you are to stay on the treatment, the more we know. And so I think all three of you brought that up. Talk to your team, mention this, discuss it and it's really important to have that communication.
Here's an interesting question from an audience member: I have been coping with a fear of my cancer returning. How do you cope with these types of feelings and what do you suggest? That all three of you are doing really well, but I'm sure in the back of your mind, that's something that comes up. Karen, go ahead. Why don't you start that segment off?
Karen: That's a really good question. And I can remember when I was stage one, that was always my thought, what's going to happen if it comes back? And I think for me, the empowerment came with becoming very educated about resources and becoming really educated about the latest cancer treatment in regards to triple negative breast cancer so that I can have that information. So when it did happen to me, I didn't feel like I was just out there without a plan. I actually had information and I could actually form a treatment plan. I actually had a voice in my narrative in how I wanted to move forward and how I was going to make science-based decisions based off the latest cancer research. So sometimes it's good to have support as far as a support group, as far as having someone to talk to like a therapist. But for myself, I like to always just delve into the latest cancer research and find out what's going on so that if something ever happens, I'm armed with the information and that empowers me.
Dr. Ezra Cohen: It sounds like information was critical to that aspect. Alan, what about you? How do you deal with that?
Alan: I'm eight months into my survivorship and with every scan, every CT, every MRI, I'm a little nervous, but I get up in the morning and I say out loud, but not loud enough to wake my wife, "Every new day is a gift." And that's the way I look at it. You could be walking down the street and hit by a truck. The what-ifs, I stopped asking the what-ifs and I do worry. Yes. And I'm anxious about it. Yes. But I try to embrace life and I'm grateful that I'm here.
Dr. Ezra Cohen: Yeah. And Stephen, what about you? So again, we know, or you mentioned that your cancer is associated with Lynch syndrome, which of course, it predisposes you to the colorectal cancer. And so how do you cope with those feelings?
Stephen: I think in regards to Lynch, I've always lived by, I'd rather know that I have it than not. That knowledge really is power. I know what to look for. I know what kind of screenings I need to get, yearly. For those who don't know, Lynch does raise your chance of your risk of getting colorectal cancer by a lot. And for women, it actually raises your chance of uterine and endometrial and other cancers. So, knowing your family history is one of the biggest tools you have in the fight against cancer. But in regards to the fear of it coming back, a lot like Karen, information has been my friend. I've read the studies that say, "Okay, the protocol is now keep someone on immunotherapy for two years, take them off, watch and wait, rinse and repeat, if you have to." I was on that trial for about five years and spent three and a half of those years, NED.
So, that fear, it's diminishing, but it will always be there. Cancer never truly leaves your mind, even if it leaves your body. So I know that studies have shown that people who rechallenge it with medication usually have a good response again. And if I can't get my medication through compassionate use, because it's not indicated by the FDA for my type of cancer yet, then there are many other immunotherapy drugs that are doing some fantastic things in awesome people. So, I've got a plan and I think that plan, it keeps me sane.
Dr. Ezra Cohen: Yeah. I think all three of you are empowered by action, it sounds like. Here's a question around caregivers and of course, caregivers have such an important role in the cancer journey. How can caregivers help out? How have they helped you? Let's start with Alan on this one.
Alan: My wife, my primary caregiver, who's also a cancer survivor, understands the need of the patient. That we try to... I mean, cancer is not fun, but we tried to enjoy our time together when she would take me for my treatments or for my scans, we'd celebrate with some coffee and some chocolate chip cookies or go home and watch a movie. Caregivers also needs to be cared for. I mean, there's a lot they're dealing with too. So it's a bit of a give and take. And it's an emotional roller coaster, which sounds cliche, but it truly is. So it's like love each other, enjoy things, pet an animal, get out and take a bad thing and try to make it a little less bad when you can.
Dr. Ezra Cohen: Stephen, what do you think about caregivers?
Stephen: Caregivers are, I mean, they're angels here on earth. There is no other way around it. I would say that the best thing caregivers can do to help us is to forgive us on our bad days when we're not the friendliest people, but to also remember that they need to take care of themselves and give themselves some space. You can't pour from an empty cup. And so, caregivers, please take care of yourself.
Dr. Ezra Cohen: Yeah. Good advice. Karen, what do you think?
Karen: I think it was important for my caregivers just to be really good listeners and listen when I had something to say, and when I didn't have anything to say, just help me enjoy life. Sometimes I don't want to sit there and talk about cancer all day or talk about my treatment. Sometimes I just want to go on and be normal. And so I want to be treated as such. So don't handle me with kid gloves unless I'm asking for it. I'm okay. I'm here, I'm alive, I'm with you. Let's move forward and let's enjoy life together. So that was really important to be treated as I was normal.
Dr. Ezra Cohen: Yeah, definitely similar themes. The second part of that question was around precautions for caregivers while a patient is on immunotherapy and quite simply, I would say really not necessary. You're not a danger to the patient. The patient is not a danger to you in normal circumstances and really just go about things normally. We are about out of time. More questions are coming in. I'm sorry that we can't take them. I want to thank Alan, Karen and Stephen for just wonderful insights and just a terrific panel. I learned a lot. I'm sure the audience enjoyed it a great deal. So, thank you so much. Let me give you each 10 seconds. Final thought. Alan, go first.
Alan: I want to thank CRI for allowing me to share my story. I found it very therapeutic and I appreciate it.
Dr. Ezra Cohen: Karen?
Karen: Thank you to CRI for allowing me to share my story with others. And I think having more people who've gone through clinical trials and who've been on immunotherapy and sharing their stories will pull away some of the myths and the mystery of what a clinical trial immunotherapy is. So thank you for allowing me to share my story.
Dr. Ezra Cohen: And Stephen.
Stephen: Yeah, absolutely. Thank you CRI for everything you've done for me and done with me, and if you're a colorectal cancer patient and looking for support, you can find us at allytoally.org or Colorectal Cancer Alliance, which is CCalliance.org.
Dr. Ezra Cohen: Wonderful. Thanks again to everybody. For any further follow up or support, please use the resources that we've been talking about throughout this program, including CRI's online materials for support and information. Thanks again to everyone. Thanks to CRI and I'll bring this session to a close.
Karen: Thank you.
Stephen: Thank you.
Alan: Thank you, Dr. Cohen.
Tamron Hall: Thank you all for sharing your stories. It's inspiring to see how the work. The Cancer Research Institute is making a real difference for cancer patients. Now keep posting your questions and comments in the Q and A box. That's all the time we have for today. Be sure to tune in tomorrow for more intimate breakout sessions, where you will have an opportunity to hear from and ask your questions of doctors with expertise in breast cancer, ovarian cancer, prostate cancer, lung cancer, and melanoma. I'd like to once again, take a moment to acknowledge our program sponsors whose generous support makes possible CRI's Immunotherapy Patient Summit. We also would like to thank the Cancer Treatment Centers that have supported this program. And finally, I would like to thank all of you for being part of the first CRI Virtual Immunotherapy Patient Summit. I look forward to continuing the conversation and hearing from all of you during day two of the program.