How Immunotherapy is Reshaping Cancer Patient Survivorship Experiences

Breakthroughs in immunotherapy have led to longer lasting treatments, and even cures, for many different types of cancer. Many cancer patients who participated in early immunotherapy clinical trials have become patient pioneers. They have lived far beyond the limited prognoses their oncologists initially gave them and entered an unexplored, and largely untold, realm of the cancer survivorship experience.

In this webinar for patients and caregivers, three CRI ImmunoAdvocates discuss redefining and navigating their lives after immunotherapy. Guest moderator Kristin Kleinhofer (leukemia) speaks to Brendan Connors (melanoma) and Sunshine Pegues (lung cancer) about their unique cancer survivorship experiences, including the management of long-term side effects, continued self-advocacy and self-education, and their long-lasting relationships with their health care teams.

In August 2010, Kristin Kleinhofer was diagnosed with acute lymphoblastic leukemia and began a two-year journey of inpatient, intense chemotherapy that ultimately failed to keep her in remission. By February 2014, the cancer was back and Kristin’s family sought clinical trial options. At the recommendation of her doctor, she enrolled in phase 1 clinical trial of chimeric antigen receptor (CAR) T cell therapy. She was one of the first patients to receive this therapy in an outpatient setting and was among the 93 percent of patients in her trial that achieved remission. 

Brendan Connors is an adventurer and metastatic melanoma veteran. In May 2010, he had a precancerous mole biopsied, but by November, his scans showed metastatic melanoma. After surgery, Brendan underwent two separate immunotherapy clinical trials. Having adventures to look forward to was crucial to Brendan as he coped with the emotional and physical taxes of cancer treatment. Upon turning 30 in 2013, he jumped out of a plane, ice climbed, and hiked the Grand Canyon. Today, Brendan is focused on moving forward one gear at a time—being with family, including his daughter Emilia, born over the summer of 2020.

In 2011, Sunshine Pegues was diagnosed with stage 4 non-small cell lung cancer. Standard treatment at the time was chemotherapy followed by 35 days of radiation, which burned the skin on her neck and left her in more pain and skeptical about the advice of her health care team. She moved back to her hometown, Seattle, where she enrolled in two clinical trials. The second trial tested nivolumab (Opdivo), an anti-PD-1 immunotherapy, which stopped her cancer from progressing and eventually, caused it to become inactive. 

The “Cancer Immunotherapy and You” webinar series is produced by the Cancer Research Institute and is hosted by our senior science writer, Arthur N. Brodsky, PhD The 2021 series is made possible with generous support from Bristol Myers Squibb and Alkermes.

Browse our Cancer Immunotherapy and You Webinar Series playlist on YouTube or visit the Webinars page on our website to see other webinars in this series.

WEBINAR TRANSCRIPT

Arthur Brodsky: Hello, everyone and thank you for joining us today during the ninth annual Cancer Immunotherapy Month and welcome to the Cancer Research Institute “Cancer Immunotherapy and You” patient webinar series. I’m Dr. Arthur Brodsky, senior science writer at the Cancer Research Institute. And we are very fortunate to have some pioneers of the patient world with us today, whose journeys have led them to cutting edge immunotherapy clinical trials that paved the way for the approvals of these treatments, and gave each of them the chance to enjoy life again. Over the next hour, we’ll be discussing how they’ll be discussing how immunotherapy is reshaping cancer patients survivorship experiences, and toward the end, we’ll have some time to answer audience questions, which you can enter via the Q&A box below. And I should also mention that we have closed captions available for this webinar, which you can access at the bottom of the window. So also, before we go on, I’d like to quickly thank our generous sponsors, Bristol Myers Squibb and Alkermes. So first, we have Kristin Kleinhofer of San Jose, California, who will be serving as our guest moderator today. Kristin was diagnosed with leukemia in 2010 and treated with chemotherapy before her cancer came back in 2014, at which point she received CAR T cell therapy. Sunshine Pegues of Seattle, Washington, was diagnosed with metastatic lung cancer in 2011. She initially underwent chemotherapy and radiation therapy and later received a checkpoint inhibitor immunotherapy known as nivolumab, that targets the PD-1 pathway. Finally, Brendan Connors of Stamford, Connecticut, was diagnosed with metastatic melanoma toward the end of 2010. After multiple surgeries, he took part in two clinical trials, first receiving a cell therapy created using T cells taken from his own tumors, and then a combination of two checkpoint immunotherapies including nivolumab and ipilimumab, which targets the CTLA-4 pathway. And now I will let you take it away, Kristen.

Kristin Kleinhofer: Thank you, Arthur, for the introduction. I know that three of us are excited to be here. So I thought we would start off with discussing the word survivorship. The National Cancer Institute defines survivorship as the health and well being of a person from initial cancer diagnosis through treatment and beyond. I find when I ask patients what survivorship means to them, there’s always different responses. I know for my partner, Benny, he thinks survivorship begins when treatment ends. But for me, I do relate with survivorship being used when I was initially diagnosed, and it was really about how I was going to try to continue to live my life as best as I could going forward. So Sunshine, what does survivorship mean to you?

Sunshine Pegues: Thank you, Kristin. To me, survivorship means that I survived the worst journey in my life. I continue to live a healthy life. And I am very thankful for that. But that’s how I view survivorship. I made it through that part of the journey.

Kristin Kleinhofer: What about you, Brendan?

Brendan Connors: Well, first thanks to CRI for including me in this, this is fantastic. So I actually I looked up what survivorship meant. And I got to cancer.org. and it says in cancer, survivorship focuses on the health and well-being of a person with cancer from the time of diagnosis until the end of life. And includes physical, mental, emotional, social and financial effects of the cancer diagnosis. And I thought that was interesting, because obviously it impacts every person differently. But to me personally, it really just means living. Because once you’re diagnosed with cancer, it’s something that stays with you forever. And you know, from the moment you’re diagnosed, you just want to survive and live. But you also want to keep on living to survive, if that makes sense. So I took the definition of survivorship as a way to kind of better myself, and those, you know, those around me. And the parts of the definition from cancer.org, that I think are most important is the mental, emotional, and social part of that because you always think about the physical and the financial part, but you aren’t really thinking about those other terms as well that kind of go into what it means to kind of survive in this and the survivorship part of it.

Kristin Kleinhofer: So true. So true. Thanks both of you guys for sharing that. And so next I thought we could talk about the word cure. I know for all of us, anyone battling cancer cure, is the word that we’re all hoping to hear one day. And doctors use it differently. I know for me and my medical team, the word cure has never been used, it’s always been wait and see, you’re in remission, no evidence of disease. And even being almost seven years out from my own treatment, I find it hard to use that word cure. So I was wondering how you guys felt about that. And essentially, what does cure mean to you in your context of your journey?

Sunshine Pegues: Like you Kristin, my medical staff has never used that term. I still have three small tumors in my lungs that are non-active,  is the terminology we use. I was part of a drug trial, and after, you know, six, seven years, I kept asking, ‘well, am I am I in remission?’, and my oncologist says you’re not active. And finally, I would say about nine years out, he used the word remission, but he said, it’s not the traditional term of remission. So what we do is, we say my tumors are not active. I have not had treatment in, you know, the last eight years, and as long as they remain not active, that’s the status I will be so I, even when I talk to my support system, my friends, my family, etc. As, you know, my yearly scans, it’s just my tumors are not active.

Kristin Kleinhofer: What about you, Brendan?

Brendan Connors: Yeah, I’m kind of in that same boat too. So for me with melanoma, they don’t really say cure, but they do use the word remission, and I feel like cancer as a whole, you know, the word cure. I don’t really know if there is cure for any cancers. But I mean, obviously, Dr. Arthur would be able to kind of say that more than I could, but um, I think, you know, there’s, there’s treatments that, you know, may cure you. But it doesn’t mean it’s like it’s a finite cure by any means. So my doctors would use the term remission, you know, as almost like the end of the journey. But you know, it’s one of those things where, since it’s not a cure, you know, it can come back. So there’s no real like, defined end date, so to speak. I think that overall, like the word curing cancer is a term that, you know, you’re hearing a lot more now than before, which is super exciting. And the advancements of, you know, immunology and immunotherapy, have really, you know, enabled that word to be more commonplace, which is really awesome.

Kristin Kleinhofer: Yeah, absolutely. I thought we could talk a bit about advancing medicine through clinical trials, since we were each in clinical trials. And when we were each in our trials, the immunotherapies that we received weren’t yet approved. And those approvals came later, based on the trials we were in. I know for me, I’ve been really excited to see over the years that there has been FDA approvals for several CAR T treatments for those with certain types of cancers that for those that have relapsed or are refractory. And I know my hope continues to be that one day immunotherapy will be a frontline therapy for all of us one day, as it’s less toxic and more targeted, and Sunshine I was wondering how you felt about being part of important work that is now benefiting others?

Sunshine Pegues: I would probably say that that is the second best part of the trial. Clearly the first was that it worked. So I’m you know, a little selfish there. So that was the first thing. But the second is knowing that you participated in something that allowed the researchers to advance a treatment that now they understand who they can give that treatment to. That is so fulfilling. It’s hard to express what that did for me. You know, I like I said, I don’t want to belittle the fact that it worked and being as part of a clinical trial. You know, you don’t know for sure if it’s gonna work or not work, but it did, but actually being part of a world renowned research center that was using your results, using your blood to understand who could benefit from this. And then to know, in my case that the drug did go into FDA approval, and it’s now common drug that’s being used. That that’s I feel blessed for being a part of it.

Kristin Kleinhofer: What about you, Brendan?

Brendan Connors: Yeah, and I echo everything that Sunshine just said, I think to me the word that I use is wild. I mean, it’s, it’s wild to see how far immunotherapies have advanced in the last 10 plus years since I was diagnosed. And when I was going through the process, you know, my doctors were honest with me. And they said, like, you’re at the beginning, you know, you know, you’re helping us kind of pave the road for many future patients. And I’ve seen some charts that my doctor has had, you know, showed me and, you know, some that were even presented at conferences, and they show like, the outliers on the chart, they would say, like, that’s you all the way out there. And it would be this, you know, you’re so far along in the process, but we don’t really know kind of what’s next. So you’re helping now and just knowing that, you know, it, it does give you that kind of that sense of pride that you are doing something to help, you know, in the future. I mean, anytime they would ask for additional vials of blood, so that they can do extra research, you know, you’re giving at this point 10-15 bottles of blood and like, what’s 5more? So I always check the box and said yes, or my doctors came to me, and they said, actually, you know, we want to do some more research in the lab, can you, you know, sign the form to approve us to like, go back and, you know, re-examine your cells and [inaudible]. I always check that because I always knew that, you know, maybe that will help a little further with the trials, maybe that will help them learn more. And, you know, so I was always checking the boxes, and you know, always saying yes to it, because you know, if you’re going to you’re in the clinical trial, you just, you know, you kind of go all in from the beginning.

Kristin Kleinhofer: Yeah, it’s it’s, like you both said, I mean, it’s just, it’s an honor to be part of that. And as you said, you know, we’re fighting for our own lives, but that we could pay it forward with hopefully helping other cancer patients, maybe one day, they don’t have to go through what we went through. So the next topic, I thought we would talk about how we each learned about immunotherapy. Again, you know, when we received it, the doctors themselves were, it was very new for them. And they were still learning compared to the treatments that they had worked with, with chemotherapy and radiation. I know for me, when I did my CAR clinical trial, the PI was very excited. It was- he had only was a year into his clinical trial, it only had a handful of patients. And he was just so animated in how he really informed me on what CAR T cell was and that my cells would be collected, they would be sent to the lab, and they would be engineered to recognize target marker CD 19 for my type of cancer. They’d be grown in the millions. And then they would be when they’re ready infused back into me. And these little cells would go around and find my cancer and attack it and kill it. And I remember when he was explaining it, I kept envisioning little Pacmans going around my body. And even on infusion day, I was imagining that, and later he told me he’s like, well, it’s not like they’re eating it, they’re actually blowing up the cancer cells and moving on to do another one. But just that excitement, I really felt it and really, I had to rely on the PI to really inform me on the CAR T, the common side effects that they’re seeing, some of the potential risks, and he also shared some of the success stories. And there just really wasn’t any information out there at the time in 2014. Unlike today. Today there’s just so much information, which is great. And so I was wondering for you guys, we’ll start with Sunshine, how did your medical team help you better understand what immunotherapy was and what the treatment might entail?

Sunshine Pegues: I should preface it by saying I was part of a 1b trial. And 1b basically there are 50 participants in it. And when it was explained to me initially, it was like we know what dose won’t kill you, now we’re trying to find out what dose will work. And so my medical staff went through all of that, as most of you know that have done, the two of you that have done the trials, there’s a lot of disclaimers, you have to find. To be totally honest, I was like overwhelmed by some of that. I didn’t really know what all of it meant. I had support systems that actually read some of those documents. But as far as through the process, my PA was my primary interface to help explain what the doctor was really saying. I think the challenge and Brendan hit on this a little bit, the challenge was there was nobody really before me. So every time I asked a question it was we don’t know. No one’s gotten this far along in the trial. And that, my oncologist was very good at reassuring me through the relationship we had, so that I could trust what he was saying. But there is, you know, just to be totally transparent, you’re a little unsure when they say, we don’t know what next month’s gonna bring. Because there’s nobody that’s made it this far to be for us to be able to tell you. And even once I got through with a therapy, it’s like what’s next? And, you know, they’re like, you’re gonna be telling us what’s next as we watched you through this process. But the actual part of the immunotherapy, the the drug infusions, etc, that were happening every two weeks, my PA did an excellent job preparing me for that at what sort of side effects I was going to have those types of things. I think now, as you mentioned, Kristin, there’s more knowledge, there’s more data out there to help people understand what the journey is going to be. But when you’re on the, the beginning, sometimes you are the path that’s laying it. So they’re using you to get the data, aor they’re talking at conferences about you. And, you know, so that’s where I was, I don’t know, if Brendan if you had a different experience.

Brendan Connors: Yeah, I learned a lot, obviously, from the doctors, you know, this was, you know, back, this was 10 plus years ago, so there wasn’t a lot of information out there. So, you know, I was trusting in the doctors, I learned by asking questions, I learned by hearing my you know, my parents, my brothers asked questions that I wasn’t thinking of right, that I didn’t, you know, think to ask, I learned from the nurses, I learned from other patients that were also, you know, I was down the cancer research, down at Bethesda. And, you know, I learned from other patients that were down there, as well. And I think, you know, there was some pamphlets, there’s some handouts that the doctors gave, so I read them. And they’re just, you know, now I think there’s a plethora of information that’s on the internet, but you know, not all of it is really backed in, you know, that science, you know, not everyone has all of that information that is really needed to make, you know, dedicated decisions on that. So I think it’s important to, you know, trust in what the science is now, obviously, you know, Sunshine and I and Kristin are so far out from this, that there is a lot more information now. So it is much different, but I think things, you know, like we’re doing right now, for CRI that, you know, there’s the, you know, ImmunoCommunity, there’s patient summits, there’s webinars, and, you know, you can find that information out there, and you can really talk to those people and, you know, gain that information that it has been, you know, published that you can now learn more about and help with those decisions on those on those next steps. But for me, when I first started, like you said Sunshine it was, in the beginning, and you know, there wasn’t a lot of information. But when I was down at, down in Bethesda, I actually went into the lab after they took my cells out, and I was looking at them through the microscope because I was curious about it person, you were saying about the Pac Man, like, in my mind, I had, you know, it was almost like an army of these, like little cells that they were then like, you know, mutating and in the lab, and then we’re going to get back to me, and then we’re just going to go in there and fight. And like having that in my mind of understanding kind of how that was working, it was kind of to go back to the other word, it was wild to think about it like it, you know, you’re taking out 100 cells, and you’re turning them into, you know, 500. But in my case, it was billions, you know, billions of cells that found out that, you know, this cancer cell is bad. And now that we know that we’re going to tell our friends, now our friends know and we’re gonna tell their friends, then once we get back inside, we’re gonna go find it all, we’re gonna, you know, we’re gonna fight it. You think about it, like, you know, the research and the science that goes behind being able to teach this, you know, these cells tend to do this. It’s crazy.

Kristin Kleinhofer: It’s amazing. Science is so fascinating and amazing. And I like how you brought up how now you know, I totally agree with you. I think for me, what I found, you know, continuing on in my survivorship after immunotherapy is the Cancer Research Institute is has a plethora of information, such as these webinars. And I know for me, particularly like the patient summits, where they have the medical experts coming in talking about different types of cancers. And the latest breakthrough and treatments for immunotherapy are just so educational for patients and for caregivers. And for those of us that have been on that journey, knowing what’s been approved, what hasn’t been approved what’s on the horizon, in case ever, a chance to ever need to do it again, due to a new treatment. And I just wanted to say I did see some people chatting. And if you guys do have questions, please feel free to use the Q&A for questions that we can help answer later as well. I just wanted to let you guys all knew about that. So I thought the next topic we could also talk about and discuss is challenges. And I know each of us have faced incredible challenges on our cancer journeys. And and I know for me, I think one of the biggest challenge for me during my CAR T cell immunotherapy, was that really I’d hoped it was the end of the line. That if the treatment was successful, that that was it, that was going to be the end result. But it was still so new and so early on, that it was really being used as a bridge to then get a blood or marrow transplant, which I did do. And so I was curious for you both. Did you have any huge challenges that you didn’t expect during your immunotherapy treatment, or even after? I’ll start with you Sunshine.

Sunshine Pegues: Like you, I thought when I got done with the 18 months, that meant I was done. And in reality, I mean, you know, the good thing is I went from having scans every six weeks, to, you know, every two months to every three months, every six months now, up to once a year. But as anybody who has cancer knows, when you go in for scans, you always have that scan anxiety for the week before, you know, what are they gonna find? I’m sure there’s something back, I’m sure something’s active, has it spread, etc., etc. So knowing that, in my case, the tumors are still there, they have shrunk, and they are not active. I’m always worried about what’s next. I am treated at a, you know, pretty world renowned facility. So I know and I think you may have mentioned this before, that there’s been so many advancements, they say every two years is a leap in technology as far as the advancement with the research. So I have the security of knowing that if I do go active again, they’ve come so much farther, as my doctor says, we know what works for you. So there’s that comfort level. But you still I don’t think when I entered it that I thought, you know, here 10 years later, I would still be in the state that I can, yes, living but still at the back of my mind, thinking about? Will it come back? And I think this goes back to a previous question about cure, we know we’re not cured. So that’s probably the biggest challenge during the time of getting the immunotherapy. For me, it was what other negative impacts that was going to have on my body. And I think that was just some residual that I had as a result of traditional treatments. In the intro, you heard I did go through chemo and radiation. And I have some, you know, long lasting residual from that. So I was always worried. Was there going to be some residual immunotherapy that I wasn’t aware of in that five, six years later, I’ll realize. Yeah, so that was it for me.

Brendan Connors: For me, in terms of challenges, I was pretty lucky considering I didn’t have anything that’s been kind of, you know, long lasting, and I haven’t had any issues from chemotherapy, and I haven’t had any issues from the IL-2, I haven’t had really any long form issues from the other immunotherapies. But I guess what I’ll talk about in terms of challenge is just the challenge of normalcy. You know, I always wanted that sense of normalcy. I didn’t want to feel like I was, you know, a burden to anyone. I always kept positive attitude, you know, knowing that cancer wasn’t going to change or control everything in my life. You know, that was important for me. Like, for instance, after one of my sessions at Memorial Sloan Kettering. I went and played a beach volleyball game with a bunch of my friends. And then after that, you know, after we won, we went to the bar after and, you know, we had a few drinks. So that sense of normalcy, like that was a challenge, because I wanted to make sure that I stayed like true to myself, you know, and normal was something that was the biggest like challenge, so to speak, cuz I didn’t want cancer to change me from, you know, outside of what it was already doing. I wanted to make sure that I was still you know, who I was.

Kristin Kleinhofer: Yeah, very, very true. So that we could talk a bit about support and resources that maybe we wish had been available when we had done immunotherapy. Um, I know for me, I wished when I was doing CAR T, that I could have met someone, you know, talking to them, just to hear how their process was knowing that it would be different. You know, it’s not always the same, but just to have someone to talk to just to get their insight input on how their treatment was, you know, what kind of side effects they went, they got just to get more reassurance, besides from just hearing from the doctors. So I was curious for and it’s great that now, you know, that is available, that they do have that one on one peer support that people can reach out to CRI ImmunoAdvocates such as ourselves where people can connect with us and talk with us about our treatments. I know the Leukemia and Lymphoma Society also has it for CAR T for blood cancers. Imerman Angels is another organization. So I was wondering for you guys, what do you wish, maybe resources would have been available at the time that you did your immunotherapy?

Sunshine Pegues: Like you I mean there wasn’t anyone to talk to to, besides your medical staff, but outside of that, to actually you know, share some of the anxiety or your fears, etc, well there wasn’t a lot available on the internet or resources. And you know, one of the things you do want to be very cautious, is doing research on the internet, you need to know your sources, you know, he needs to credible places, because otherwise you will have yourself six feet under after the first day of doing your research, you know. So I wish there was more organizations like CRI that’s available now, back then. The other thing is to recognize that even though you’re going through this journey, your support system’s going through it too. So if there would have been support for them to where they could go ask questions outside of just your medical staff, to so that they could understand what was going on. Like, in my case, I was in isolation for six months, because they weren’t sure what was going to happen. And that was hard on people. So just those support for your immediate family or your immediate friends, whoever is your support system. That’s  very nice for them to be able to se. I’m glad we have that today. And I would recommend people definitely using those.

Brendan Connors: Yeah, I mean, this, this is something that we’re doing right now, but I think is a good enough support resource for people and says sometimes, you know, and Kristin’s point, when we didn’t have a lot of us, like we were, you know, going through this 10 plus years ago. So I know saying like [inaudbile] because I’m here and I’m talking, but I think resources like CRI are invaluable. But I also think people like myself, Kristin, Sunshine are also resources that weren’t available when we were going through it too and, you know, being able to talk to someone that went through it, even if you don’t know them, you know, it’s just someone to kind of bounce an idea off of and obviously everyone is different, everyone reacts to certain ways. But being able to kind of share what you’ve gone through, I think, you know, that does help people. And that’s a resource that some people like and you know, it may be easier to, I had someone reach out to me on on Instagram and, you know, said that they were going through treatment that I went through, you know would I mind answering some questions and have a call with them and totally fine by me and I didn’t know the person before that, but I’m glad to know that I was I was able to kind of answer those those those questions for him. And you know act as you know, kind of a support and a resource option for people that may, you know, may need that as opposed to kind of reading stuff on the internet. To Sunshine’s point, you know, you have to be careful exactly, you know, where you’re reading it and what’s, where it’s from.

Kristin Kleinhofer: Yeah, no, it’s totally true. Thanks, you guys for sharing. So we’re gonna, um, we’re actually going to start opening it up to the audience Q&A. And we do have our first question that we’re going to discuss, and it’s a big topic. It’s a topic that I’m sure all of us have been affected by. And the topic is financial toxicity. And so an audience member just wants to know, in our survivorship journey, have we been impacted by financial toxicity? And if so, are there any resources or advice that we can find? I’ll start by just saying that yes, I have been, I had to move out of my house, put my belongings in storage, had to move in with my mother. And I ended up losing my job eventually with time because I had been out so long as I got medically separated. So definitely, finances was always kind of a battle during my survivorship. And then also the resources that I have since found is great organizations like Triage Cancer, where they have all about your legal rights and resources that are available. And they have a big area on finances on their website. So they’re a great organization I can recommend, also have learned about the Patient Advocate Foundation. And they can work with you for those that have a lot of billing issues with your provider and your insurer. And they could actually help negotiate medical bills. So that was a huge resource that I, we’ve all found out the past few years. So there’s a lot of great things out there. And I know social workers are another huge resource that people can turn to to ask and see if there’s any financial grants are anything that you can apply for. Sunshine, do you, were you affected by financial toxicity?

Sunshine Pegues: Yes, like you, I mean, we all have been at some point, I was blessed in the sense that I worked for the same company through the whole journey. So I’ve had major medical insurance. But as people know, even with major medicals, sometimes that out of pocket and deductible could be steep. One of the things though, that I would like to point out, and I just recently experienced it in January, is you can get hit with a you know, in my case, it was you know, $6200 bill from UW Hospital. And they were very readily available to set up a plan to provide options for me to make payments, you know, they also had a program to if I couldn’t afford to pay that, you know, there’s a process to get them to write that off. But since I was working, you know, in my case, they just set up a monthly payment plan for six months. And like you said, there are resources out there, there’s a lot of counseling, as I am even getting ready to relocate. And going, you know, we go into a different facility, one of the first things I did was contact them to see, what is your programs? How do you take my medical insurance? What do you do if it’s not? So I would just recommend, to anyone that’s running into these issues, especially when it comes to your medical bills, can’t speak to the other part that you were talking about Kristin, but to be open with the provider to ask them if they have financial counselors? What can they do for you to help you through this? What can they do to you know, reduce the bill? There’s great, like you say, there’s grants out there, etc. Don’t let resources keep you from getting the treatment you need. There’s, reach out and be honest with people and you know, they will try and help you find the necessary resources. But on the other side, yes, we’ve all had to make some financial decisions, reprioritize things because this has been a costly journey. And that’s just the reality. But please, please, please use the resources that are out there, because they are out there to help you.

Brendan Connors: For me, my financial hardships don’t pair in comparison to Sunshine or Kristin. So I feel like going after both of you, I don’t I don’t have those stories, like you guys have. They’re heart wrenching. But I think, you know, to Sunshine’s point like understanding kind of what your your insurance is, understanding where your providers are, you know, also understanding, you know, when you have to pay a bill like a bill comes due, and it could be for a couple $100, maybe $1,000, whatever it may be. And at first I was like, well, I don’t know, if I had that money right now. You know, I was able to actually, you know, call up the hospital and they said, well, if you want you know, if you pay it, you can go into a payment plan. And there’s no there’s no interest on it. Or if you want you pay it off in full right now, we’ll actually take 10 or 15 or 20% off the bill, and then you’re done. Now that bill, which was since $1,000, now is $800. And you’ve saved you $100 if you pay it off right away, or you can do a payment plan. So there are options. It’s just a matter of asking those questions and making sure that you are educated in that because when those bills come due, you know, sometimes you just you know that first thought is to kind of, you know, worry and freak out but there are people that have gone through before and there are hotlines that you can call whether it’s a hospital or you know, wherever you are your doctor and they can, you know, direct you in into that that right conversation.

Kristin Kleinhofer: Yeah, exactly. And I think that’s the key is that there are resources out there and just to ask. Ask for help. And so we have another question going off Kim’s wonderful story in the chat. And the question is how has immunity, how has cancer and immunotherapy change how we approach our health, as far as paying attention to other potential health problems, or making efforts for preventitive care? So I know for me, I mean, definitely, you know, I was totally healthy and cancer became as a total surprise, one day, it has absolutely changed how I consider my health going forward, I’m extremely involved with my medical team, constantly asking questions, if I noticed something different, we’re changing, I’m always on it. So for me, I feel I’m very much an advocate for my own health, I might learn that advocacy through my cancer journey, and beyond becoming a very strong advocate, asking lots of questions, really making sure that I as well was making a part in making the decision of what I want to do for my treatments, that I wasn’t just being told that I could  make educated decisions as well, based on research I was doing. So what about you, Sunshine and Brendan, do you feel that your going through cancer immunotherapy, has it changed your approach into paying attention to other kinds of side effects or health conditions?

Sunshine Pegues: If anything you’re ultra sensitive to changes in your body, how things feel. You don’t, I personally do not delay, risk, you know, reacting to it, trying to find out. But one thing I wanted to key in on what you said, Kristin, you have to learn to be your own advocate. And to speak, to ask questions when you don’t understand, to press. I think one of the things, at least in my background, was we just took what doctor said, and we, you know, everything was happy. But since this I do challenge a lot. I ask, I’m constantly asking questions. And the other thing I would point out is, and I think we’ve all been through it is when you are diagnosed with cancer, your ears don’t hear clearly a lot. Because there’s a lot of overwhelming. And I recommend this because like Brendan I’ve worked with a lot of people who are newly diagnosed, you know, as far as support, and a lot of the things that I advise them that I wish I would have done in retrospect and I now do going forward is to have another set of ears there. And your questions written down. Don’t be ashamed to break that notepad out with your questions, and write the answers down and just press until you understand and have your medical group talk in layman’s terms. That is so key. But yes, the advocacy and your self advocate is huge. And I think that’s something we’ve learned through this journey, because you’re not a body. You are, you know, and this is your future, and it’s your health. So yes, totally ultra sensitive to every ache I have or everything that’s different. I’m like, what is that? So you probably can relate.

Brendan Connors: Yeah, I remember one of my first questions when I was down at NIH was, you know, is there a certain diet that I should be on now and the doctor said, like, you know, there is no, you know, certain diet and granted mine was melanoma. So you know, it was more skin cancer. So what they said was, you’ll be more susceptible to skin cancer in the future. So it’s, you know, make sure that you are, you know, you have on sunscreen, make sure that you’re aware. And if I’m out in the ocean, I’m that guy, like the long sleeve shirt and a hat, like, I’m that guy. But it’s just kind of there being being aware of that. And so someone in the chat asked about side effects. I think it all depends on kind of what stage you’re at, you know, the side effects that I have for chemo versus the side effects I had for IL-2 are very different. I don’t have any long-lasting side effects outside of just, you know, making sure that I, you know, I’m very susceptible to, you know, to like light, you know, so people that go to the beach and don’t have an umbrella? I’ll never understand that. And I definitely don’t understand it now. So I need to find the shade.

Kristin Kleinhofer: So true. So continuing the conversation about side effects. And a question came in the asking, did any of us have to stop immunotherapy to give our body a break during immunotherapy? I know for me, it was a one time treatment the CAR T cell. So there was you know, I did it. I experienced my side effects A few days later, they lasted for about a week. And really then it was just my body recovering. And really, within a month after my CAR T cell immunotherapy, I felt more physically strong than I had ever felt had I undergone chemotherapy. So it was really quite amazing. What about you sunshine, did you ever have to take a break?

Sunshine Pegues: Not at all. And I like I said, I was getting treatment every 2 weeks for 18 months. And throughout that time, there was no side effects. Initially, and I’ll back up a little bit, maybe the first week or two, there was some, a little tiredness just to your body get used to it. But after that nothing like traditional chemo and radiation. I, after my isolation period, and I was only isolated, because they weren’t for sure this being a drug trial, what it was going to do and what the impacts of my environment we’re going to do. So they kept me isolated. But after that, I resumed going back into the office, I continued with my normal life, and there’s been no side effects. So I am very thankful. And that is one bonus, I think of immunotherapy, it’s that you don’t have the side effects you do with traditional treatments.

Brendan Connors: For me, there was so when I was down at National Cancer Institute with us, I was on IL-2 and I had to come off IL-2 just because so they are monitoring your, your your breathing your respiration, you know, and after, I think it was the eighth dose, you know, my oxygen levels were low. So I had to I had to stop that therapy. But I was just more of the science talking and understanding the body and how that was reacting. And then the other time was when I was at Memorial Sloan Kettering, it was I was still on the treatment, they were watching the nodes. And it wasn’t getting smaller wasn’t getting bigger. So it was you know, you can continue to be on with therapy. But we could also have a surgery, we can go in and take it out. And you know, so I ended up stopping that therapy because I had a surgery for that. And then I had one side effect on the therapy at ms guy to develop a rash one day and went to the hospital, I basically got a steroid and it subsided. And that was it. Other than that I didn’t really have anything that made me come off of theirs.

Kristin Kleinhofer: Now that’s great. And then just for me as well, I know that both of you have shared that you don’t have any long term side effects from your immunotherapy. I as well don’t either. And I know we are very, very fortunate. And in some rare cases, I do know that with some immunotherapies, there can be some serious long term side effects. But I’m very blessed that that hasn’t been the case for the three of us. And so then another question that we have here is why do we think it’s important to have open communication with our medical teams throughout our cancer journey and beyond? I’ll go ahead and start. I know that open communication is key, again, just reiterating that you really want to have a close partnership with your medical team. If you don’t feel that they’re listening to you, you want to seek another doctor, because really, you’re working together for your continued survivorship. And I felt that I felt always very comfortable with my doctors and definitely knew that you know, if I had questions you know, I asked them again advocated for myself, I was always very interested in my treatments. I probably asked a lot of questions maybe more than typical patients but I really was fascinated and learning about immunotherapy and everything but also really just wanted to know what was happening to my body and what to expect and knowing that there would be variables but but just to mentally prepare myself as well. So what about you guys? What do you think about having open communication and how that’s important for you with your medical teams?

Sunshine Pegues: Like you, I think it’s a must. When I had and I know I go back to this, when I had traditional treatment, I didn’t have that. And therefore there was a lack of trust. Like do these people really care about me? Are they just, you know, prescribing this stuff and going on about their business? And it’s probably because I did have a negative impact, my neck got burned with radiation. Once I made it to Seattle Cancer Care in Seattle, that became a priority even for my oncologist staff, because I had a couple in the same department, they wanted to rebuild my trust in their profession. Because they even thought it was very important for me to be able to trust what they told me, to feel comfortable to ask questions and say, timeout, can we back up a little bit, I need you to explain that one again. And that also allowed them to be very open and honest to say, when I had some questions, and I said this before they go, we don’t know. We don’t honestly know the answer. We’re going to wait and watch what happens to you. And then we’ll know what’s going to happen. To have that kind of communication is crucial. And it’s just keeps you healthy. But it also makes you as you mentioned, not just an advocate, but a partnership in your treatment. And your journey. It’s not you are being taken care of, you’re part of this journey. So that’s, that’s why I think it’s important.

Brendan Connors: Yeah, I agree. I never felt like a number. You know, I was always I was always Brendan to all my doctors to nurses. I mean, even now, if I have a question, I can, you know, email my doctor, I have his cell phone, like, I’m able to contact, you know, multiple ways, and, you know, having that ability to do those really important. And, you know, being able to think of it as like, as you said, Sunshine, it’s a partnership, you know, like, and being able to think that like, you know, you are like the best friends, you know, and you’re able to do that. I think that is super, super important. And it’s not just like the main doctor, it’s, you know, it’s the additional nurses, it’s the additional steps, everyone that you come in contact with. I mean, when I was down at NCI, one of the nurses I got pretty friendly with and something came up and said something about cornbread. And by the end of this, she’s like, you know, when you leave, you know, I’m going to make you a whole meal. And she brought in this whole spread for me on like, one of my last days and I had a feast. And because it became super friendly, and I found out, you know, that she’s a cook and this and that, I love cornbread, she made great jalapeno cornbread. Next thing, you know, I [inaudible]. So I think getting that level of communication, you know, that, those friendships are something that’s super important.

Kristin Kleinhofer: Yeah. And it was hard for me, I know, leaving my clinical trial, because I know a lot of the people that I consider them my family, you know, because they were with me on my journey. And it was a little bit hard, you know, leaving, but I keep in touch constantly, you know, whenever I’m around, and I see them because I had to go out of state for my clinical trials. So I go visit them whenever I’m there. And they’re just always so excited to see me. But I think there’s just always going to be that special connection that we created, I did with my medical team. And so we’re gonna head to closing thoughts. But before we do, um, someone did mention about how to how does one find clinical trials. And you know, the Cancer Research Institute is an amazing place, they actually offer free clinical trial navigators that you can work with, you can work with them via email, through phone. And you can also do the online search yourself. And so we’ll be talking about that we have a slide where you could go to find that. But I highly recommend that and you can work with them on finding a clinical trial that might pertain to your type of cancer, for immunotherapy clinical trials. And so we’re gonna head to closing thoughts. And I thought we could just close out our session with giving advice to someone that was newly diagnosed with cancer and what would you say? I know for me, I’ll start that, I think my advice would be you know, educate yourself on your cancer, try to learn as much as you can about what possible treatment options are out there. If you need, you know, seek second opinion at an academic medical center, because they usually know what the latest research is. Advocate for yourself, ask questions. I felt the more I learned the more in control I was have my path forward. What about you Sunshine and Brendan?

Sunshine Pegues: Well, I agree with everything you said there. The other thing I would say is it’s okay to be overwhelmed, budget bill overwhelmed. It’s okay to go through the various emotional stages that you’re going to go through. But then there comes a point where it’s like, okay, I’ve had my, why me? Why is this happening? You know, is this the end?  Especially if you have kids, you go through all of that? No, that is normal. That is very normal. And there’s more to cancer than just the physical part. And then once you get through all of that, like Kristin said, educate yourself. And like, I always, and I said this before, have someone with you, because you can’t, your mind can’t absorb everything you’re hearing or learning. So you need that second pair of ears, third pair of ears. But and I say this to that lady who works for me that’s going through something right now. And like I told her, take the time to deal with your emotions and let them be that is normal. You don’t have to be Superwoman or Superman. And acknowledge this is hard. And then we can go into the intellectual part to prepare ourselves, do our research, etc. So that’s what I try and do with people I know.

Brendan Connors: I think it comes down to just staying positive. I mean, you’re dealt something that you didn’t ask for, you know, it’s not like you’re going into a car dealership, and they’re like, would you like the Toyota Camry? Or do you like the Lamborghini? Like, you don’t have a choice? You know, you kind of, it is what it is. And, you know, you can you can be sorry for yourself, but that’s not going to help anything. So you know, how can you, you know, understand what you’re dealing with, and then kind of go from there. I think somebody just said, like, having multiple years, that definitely works. I mean, my mother would tell me things like, Oh, do you remember this and like, you know, chemo brain’s a thing, like, you don’t remember certain things. So having other people there that can kind of send a check that is super important. But you know, you have to stay positive, you have to have the mindset is that mine doesn’t matter. Like, you know, when I got it, I my first thought was, like, I’m going to beat this, it’s not gonna be a big deal, like we’re gonna move on. And, you know, I would wear a superman shirt, you know, to some of these, you know, trials and stuff, because, you know, why not? So I think being positive, you know, it definitely, you know, it has an impact on you know, what you’re going through.

Kristin Kleinhofer: Absolutely, I totally agree. And attitude affects not just you, but affects those around you, like you said, Yes. With that, it’s time to wrap up, and we have some slides. For more of the Cancer Research Institute’s webinars and additional resources for patients and caregivers, we encourage you to check out CRI as answer to cancer educational programs at cancer research.org/patients. In here, you can read and watch stories shared by other immune advocates besides three of us, you can browse CRI’s entire library of past webinars, including this one will be posted there as well. And Immunotherapy Patient Summit Series, which I highly recommend. You can access other resources relating to treatment, emotional support, and also financial assistance like the person had asked about today. And you can find help locating an immunotherapy clinical trial with a free navigator or through your online or your own online search, as we also mentioned earlier, and I just want to give a big thank you to our sponsors, again, Bristol Myers Squibb and Alkermes for making this webinar possible. And I really, really want to thank you, Brendan and Sunshine for joining me today and sharing your insight in your experience. I know I’m sure so many people benefited from it. I know that I did myself. You guys are an inspiration. And I want to thank everyone that’s joining us. And I hope everyone enjoyed today’s webinar. And again, you can watch this and all of series webinars at cancer research.org slash webinars. Thank you.