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Note: Transcripts of Frankly Speaking About Cancer Radio Show may contain errors. We strongly encourage you to listen to the audio of Frankly Speaking About Cancer Radio Show. Listen to the Full Episode.

Good afternoon and welcome to Frankly Speaking About Cancer with the cancer support community, your host is Kim Thiboldeaux; President and CEO of the Cancer Support Community. This hour is designed to inspire, inform, and to help you live better with cancer. Now, here's your host: Kim Thiboldeaux.

Linda: Welcome to Frankly Speaking About Cancer, an internet radio show that focuses on informing and inspiring people to live well with cancer. I'm Linda House, the President of the Cancer Support Community, and I am just standing in this week for your regular host Kim Thiboldeaux, who will be back with you next week. The Wellness Community and Gilda’s Club have united to become the Cancer Support Community, one of the largest providers of cancer support in the United States and around the world. Our services are offered at more than 170 locations worldwide and online at www.cancersupportcommunity.org.

Today, immunotherapy is one of the most exciting areas of new discoveries and treatments for different types of cancer. Researchers now know that the interaction between our immune system and cancer is very complex. Understanding how the immune system works is opening the doors to developing new treatments that are changing the way we think about treatment. Researchers have been interested in using the body's natural defence system to fight cancer for well over 100 years, but the progress in the last decade has been rapid and exciting; producing new approaches with very promising results. In that sense, immunotherapy is a new, emerging area of cancer treatment.

On this episode, we're looking at the topic of immunotherapy and the new advances. We are so fortunate to have two really special people join us. We have Dr. Gerald Messerschmidt and Elizabeth Franklin on the show. Elizabeth will join us later in the show, but first let me tell you a bit about Dr. Messerschmidt. Dr. Messerschmidt is the Chief Medical Officer for precision oncology. In his role, he provides leadership and oversight for precision oncology medical safety activities and works to provide clinical development strategies for their oncology compounds. Dr. Messerschmidt is medical specialty certified in internal medicine, medical oncology and haematology. He has 25 years of experience in the oncology drug development area, so he has certainly seen the growth and development of immunotherapy. Dr. Messerschmidt received his medical degree from the University of Portland and trained at the Letterman Army Medical Centre and the National Cancer Institute. He's held academic positions at the University of Michigan and at the National Institutes of Health. Dr. Messerschmidt was also a Captain Major in the United States Air Force and he was an oncology and haematology consultant to the Department of State and Department of Defence. Welcome to the show Dr. Messerschmidt, and thank you so much for your service.

Dr. Messerschmidt: Thank you. It’s a pleasure to be here, Linda.

Linda: So, we have an hour today to talk to our listeners about immunotherapy, and I would love for you to first spend a little bit more time talking to our listeners about you and how you chose to really specialize in cancer.

Dr. Messerschmidt: Well, there are a lot of things that occur in a person's life, like cancer. When I was in my early training as a physician it was one of those areas that looked like it was really getting exciting. That was 30 years ago and I thought the answer or the cure was just around the corner. Luckily, I can tell you that I think we're getting close to the corner now. We've really made a lot of progress in the last 30 years and immunotherapy is a really significant part of treating cancer today and in the future.

Linda: So, talk to us about what immunotherapy is and how does that work.

Dr. Messerschmidt: This is a method to use the normal systems within the human body. The human body and many other animals, even fish, and other organisms have immune systems. These are systems that fight to protect the human from mainly infection. That's how it developed to keep bacteria, viruses, fungus, and other organisms from invading the organisms. So, for humans, that's really important, but, as you know, many of us still get infections and we’re able to fight them, but we require antibiotics to assist our immune system in getting rid of the infection more quickly.

Similarly, cancer is an abnormality, but it's not from the outside of the human body, it's from the inside. So, the immune system is really the only system that can recognize the cancers as abnormal and kill them within the body. Sometimes they need help from outside and that's where physicians and pharmaceuticals come in.

Linda: I just want to play a little bit on your example of an infection and antibiotics. So, you know, typically when somebody has an infection then there are antibodies produced to respond to the infection, right? There is a parallel way in which immunotherapy works; when the tumour excretes the same and then immunotherapy works?

Dr. Messerschmidt: Actually, there are two major parts of the immune system. One is the antibodies and those are very important in infection and also important in the treatment of cancer. In fact, many immunotherapies are actually man-made antibodies to target against the cancer cells. The other part of the immune system is cells; single cells that are made in the human body that can specifically tell self or normal tissues from abnormal tissues and cancer is in the abnormal tissue category. These cellular immune systems are really the most important in identifying and killing cancer cells naturally.

Linda: Great. Thank you for that little extra detail. So, how then is immunotherapy administered to patients?

Dr. Messerschmidt: Well, the therapy can be administered the way many other drugs are administered. Most commonly, these are given within the veins, like in the arm, and they circulate around. There are also immunotherapies that are being developed that can be given by mouth but, I would say most of the more complex and active drugs are being given by intravenous infusion.

Linda: So, tell us; because I know that some people also receive chemotherapy and other types of cancer therapy by intravenous infusion or by mouth; the difference between immunotherapy and either chemotherapy or other types of therapies.

Dr. Messerschmidt: Well, these two types of therapies and several others that people have heard of; including surgery and radiation, tumour vaccines; actually all work together to try to get rid of the cancer. For example, cancer cells themselves have a common characteristic that they just grow continuously. They do not stop growing. In fact, they have mechanisms within themselves that turn off their ability to actually die. So, in a way, cancer cells are immortalized in the human body and so, they're growing, growing, growing.

That's really one of the major problems of these cells, of the cancer. They keep growing and so they push against normal tissues and make those normal tissues difficult to function as they should. They also suck the life out of the patient; they suck the nutrients and they suck the structural element out of the blood. That's why many patients lose a lot of weight with cancer because the growing cancer tissue is taking up all of the nutrients and the normal cells are in a way starving.

So, there are two aspects of treating cancer that have to be understood by your listeners. The first one is to stop the cells or eliminate as many of these cells as possible from growing. Those are direct therapies directly against the cancer cells, and that's what chemotherapy is, that's what surgery is, that's what radiation is. These are treatments that kill the cancer cells. However, what we've learned is though we have cured some cancers with regular chemotherapy type regimens, most cancers have not been curable by these. What we've learned in the last two decades in the research with the immune system is that the immune system does have the capability of eliminating those cancer cells that are still in the body after a chemotherapy treatment. So, immunotherapy actually stimulates and activates the immune system against the cancer to clean up what's left after chemotherapy, surgery, radiation, and other treatments.

Linda: So, are there particular patients that immunotherapy is more suitable or less suitable for?

Dr. Messerschmidt: There are some cancers that are very amenable to immunotherapy, but probably all cancers will be treated with enhanced immunotherapy treatments in the future. Right now, there's approval in about 10 or 15 immunotherapies against specific cancers, and those are growing every few months. It seems like now that we're getting new indications with these drugs emerging.

Linda: Let me ask you one more question as we're going to take a break, because, I know, before we were talking about the difference between immunotherapies and chemotherapy. Are they ever given together? Can you give immunotherapy alongside chemotherapy?

Dr. Messerschmidt: Yes. In fact, we anticipate that combinations of therapies; including chemotherapy, surgery, radiation, and different immune therapies; will be what is needed in the future to really have long-term survival, with the idea that the older therapies, that we've talked about, will eliminate a large proportion potentially of the cancer but not the last cell. Thus, the cancer can grow back and we need the immune system enhanced then to come in and clean up the cancer cells that are left after these other therapies. So, it's really a two prong attack against cancer that's going to be effective against these tumours, hopefully all of them in the future.

Linda: Got It. Thank you so much. This is Frankly Speaking About Cancer and we have to take a quick break, but please come back with us. We'll be back with Dr. Messerschmidt, the Chief Medical Officer of precision oncology.

Your life, your health, your network. You're listening to Voice America: Health and Wellness.

Effective cancer treatment requires more than just medication or surgery. For the country’s 12 million cancer survivors and their loved ones, the social and emotional challenges of adapting to life with cancer are on-going; how to handle co-workers’ questions, how to get comfortable with new physical realities, how to reassure worried family members, or explain to friends your priorities have changed. The Cancer Support Community is ready to help by providing free counselling, education, and hope for survivors and their caregivers, whether online or at over 100 locations around the world. The Cancer Support Community is ready to offer the support you need to live a better life with cancer. For more information on support groups, publications, nutrition, exercise programs and more, call 1-888-793-9355 or visit us online at www.cancersupportcommunity.org. That's cancersupportcommunity.org. The Cancer Support Community, a global network of education and hope.

People living with breast cancer often find it difficult to ask for help, and many of the people in their lives want to help but don't know how. During National Breast Cancer Awareness Month, Cancer Support Community is proud to support Meal Train, sponsored by Magnolia, which utilizes mealtrain.com; a free shared online calendar to streamline the process of giving and receiving meals for families coping with breast cancer. Help us reach our goal of 1000 new breast cancer specific meal trains this October. To learn more, visit mealtrain.com/mmt and enter the code ‘Magnolia B’ or visit us at cancersupportcommunity.org.

There is a difference in health and wellness programs. There can be mainstream programs, and then there is something extra. That something extra is called tips to keep you healthy, happy, and motivated; with your host, Kristin Harper. If you want to hear some behind the scenes talk radio when it comes to health and wellness, the why as well as the how, be sure to tune in each week. This show will inspire you to be healthy and happy for life as well as become the best version of yourself. Listen, Tuesdays at 3:00 PM Pacific time, 6:00 PM eastern time on Voice America: Health and Wellness.

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You're listening to Frankly Speaking About Cancer with the Cancer Support Community; an inspirational program offering the resources you need to live a better life with cancer. Now, here's your host: Kim Thiboldeaux; President and CEO of the Cancer Support Community.

Linda: Welcome back to Frankly Speaking About Cancer. Today's episode is brought to you by Merck. We're joined by Dr. Messerschmidt today and we're discussing immunotherapy. In this segment, I want to switch gears a little bit and talk about the new advances that we have seen in immunotherapy. Does that sound okay to you?

Dr. Messerschmidt: It does.

Linda: Great. So, at the very basic level, tell us why doctors and patients are so excited about immunotherapy.

Dr. Messerschmidt: Well, even though treatments to help the immune system fight against cancer actually began in the late 1800s, it wasn't until the last 25 years or so that we've actually begin to have scientific understanding of the immune system and how it communicates and can fight cancer. This has now resulted in various different types of treatments, but only a few, to start out with, have been approved up to this point. These include antibodies that can bind onto the cancer and can actually attract parts of the immune system to then kill the cancer cells. Then there are also newer therapies that are cellular therapy; meaning we take the immune cells and infuse them into the patient and they directly identify and attack the cancer cells.

Some of these are what you may have heard of called checkpoint inhibitors. These are, in a way, like with a hockey player a check is when you stop that one hockey player from moving forward toward making a goal. What happens is, in the immune system, normally, checkpoints are in place to stop the immune system from its normal function. So, if you have an infection, a staph infection, let's say in your finger, that would normally last 7 to 10 days and it doesn't keep going because the immune system has these checkpoints that stop the immune reaction from occurring.

This, actually, occurs in cancer and some cancers make some of these signals themselves to tell the immune system to turn away and to recognize the cancers as normal cells, not as abnormal cells. So, the immune system within a cancer patient is actually quite different than the immune system in a normal person; in that the immune system is constantly being turned off by the presence of the cancer. So, check point inhibitors are those drugs that inhibit those checkpoints, allowing the immune system to remain active and go against the cancer. The first one was approved about six years ago and what we discovered was that this can activate the immune system and lead to long term disease free survival of patients with certain types of cancers. It's not in everyone, but the single drug has been able to do it in multiple cancers in between 10 to 20% of patients that were never possible before.

So, this really verifies the role of the immune system to clean up the cancer cells. The immune therapies have moved on from there. There are now four checkpoint inhibitors that have been approved for various and many different types of cancers, ranging from bladder cancer to lung cancer to skin cancer, that are very effective; and that's very exciting. Just recently this year, however, two new steps have taken place, to what are called CAR T cells. These are specific cells that can recognize the tumour cells, and when they're infused, can directly kill the cells. In the first approvals, the responses have been much higher, with 70 to 85% of the cancer cells in patients having responses. We believe many of these could potentially turn into long-term disease free intervals in these patients, but that's yet to be fully elucidated.

So, these are very exciting new therapies that were just approved in the last few months actually. That's why people are very interested in the immunotherapies that are being added onto prior therapies.

Linda: Well, I have to disclose to you that I'm, actually, an oncology nurse and I remember doing clinical research on interferon many, many, many years ago. So, it is very exciting to see these developments, and I'm sure you have similar experience.

Dr. Messerschmidt: I do. Some of the older therapies, including interferon, were very helpful in making their mechanisms of action in cancer known. Interferons are extremely important in the immune system, but we're finding better, more specific ways now to signal the immune system rather than giving pharmacologic doses of the interferons.

Linda: I just want to summarize a little bit. So, essentially I'm going to try to oversimplify the mechanism of action that you talked about. You say that the cancer shuts off the immune system to try to trick the body so that the cancer can grow, but with these new inhibitors it really turns the immune system back on, so that there is, essentially, a counter attack on the cancer.

Dr. Messerschmidt: Correct. That's the way the check point inhibitors work, and they're all very effective. The cellular therapies, actually, are also genetically engineered to, in a way; turn themselves on even in the face of the checkpoint inhibitors. So, they are much more active and when they're infused they go after the cancer cells with a vengeance. I think that's why the responses are much higher and lead to these approvals.

Linda: Right. I'm going to deep dive into the CAR T cells in the next segment because we've got a lot to cover with that, but to sort of set us up for that, can you talk about this idea of protein biomarkers and is that really what draws the immune system? Explain how that all works.

Dr. Messerschmidt: Well, proteins were the original biomarkers that we noticed on cancer cells while we were still researching the immune system, but now we've learned that there are many different types of biomarkers that we can measure; that have to do with how the genes are functioning, and supporting growth in the cancer cells and how they acquire nutrients – those types of things. There are also genes that that produce RNA that specifically regulates the genes.

So, there are a lot of different things that we can measure, including DNA; which are the genes, RNA; which are part of the gene process and proteins that are made. There are other elements, like certain types of fats, that we can measure. A biomarker is a clue that we can measure; either in the tumour or now, often, in the blood of cancer patients; that tells us what type of cancer it actually could be, whether the treatment is working because the biomarkers go down, or whether the tumour is actually coming back because the biomarkers may go back up again. These are really helping us assess much more rapidly whether treatments are working, and how to select the right treatment for the patient.

This is individualized therapy or what we call precision oncology; where we're precisely measuring things that have to do with the cancer. We're measuring biomarkers and then we will be selecting the drugs that will affect their specific tumour.

Linda: So, in the minute that we have before break, would you say that this idea of immunotherapy and precision medicine and understanding molecular targets is really the future direction for oncology research?

Dr. Messerschmidt: Yes. Understanding the basic mechanisms of what is causing different characteristics of the cancers is really essential to developing therapies that specifically target and eliminate those cells and those functions in the cancer cells, allowing the immune system to clean up the dying or remaining alive cancer cells. It is the future. It's more specific and will be less toxic than the treatments of the past.

Linda: Which is good news for patients.

Dr. Messerschmidt: Very good news for patients. Yes.

Linda: Yeah. Thank you, Dr. Messerschmidt. We have to go to a quick commercial break. This is Frankly Speaking About Cancer, and please join us right after the break.

Opinions, options, answers. You're listening to Voice America: Health and Wellness.

Effective cancer treatment requires more than just medication or surgery. For the country’s 12 million cancer survivors and their loved ones, the social and emotional challenges of adapting to life with cancer are ongoing; how to handle co-workers’ questions, how to get comfortable with new physical realities, how to reassure worried family members, or explain to friends your priorities have changed. The Cancer Support Community is ready to help by providing free counselling, education, and hope for survivors and their caregivers, whether online or at over 100 locations around the world. The Cancer Support Community is ready to offer the support you need to live a better life with cancer. For more information on support groups, publications, nutrition, exercise programs and more, call 1-888-793-9355 or visit us online at www.cancersupportcommunity.org. That's cancersupportcommunity.org. The Cancer Support Community, a global network of education and hope.

Hi, I'm Nick Nicolaides; President and CEO of Morphotek, and we're delighted to be a sponsor of Cancer Support Communities’ Frankly Speaking About Cancer series. Morphotek and it’s parent company ASI are committed to human healthcare and we recognize that patients and their families are the most important participants in the healthcare process. We salute our global advocacy partners who are devoted to improving the lives of people touched by cancer every day.

Much of the time the illnesses that people feel are simply symptoms, and they mask the root cause of what the real health problem is. You can take back control of your own health starting with Billionaire Healthcare. This program is hosted by Ashley Black. Our program, will introduce you to Fascia, which is the knowledge of the living matrix. This bit of knowledge can bring you the health secrets that only the rich and famous have known until now. Listen, Wednesdays at 1:00 PM Eastern, 10:00 AM Pacific on Voice America: Health and Wellness.

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You're listening to Frankly Speaking About Cancer with the Cancer Support Community; an inspirational program offering the resources you need to live a better life with cancer. Now, here's your host: Kim Thiboldeaux; President and CEO of the Cancer Support Community.

Linda: We're back with Frankly Speaking About Cancer. Today's show is brought to you by Merck. I'm Linda House and I'm filling in for your normal host, who is Kim Thiboldeaux, this week. She'll be back with you next week.

We've been talking to Dr. Messerschmidt about new advances in the field of immunotherapy. So, Dr. Messerschmidt, let's go to some of the really recent high science immunotherapies and you mentioned in the last segment; the CAR T cells. As you mentioned, these are very recent advancements. Can you just explain them a little bit more because they are, I know, fairly detailed but super interesting?

Dr. Messerschmidt: They are very interesting and very effective, and so, they really have medicine oncologists in the scientific community buzzing because they really look like a major part of the future therapy of cancer. Let me explain it so that people can understand. These are cells taken from the patient that should be able to kill the cancer, but they're being turned off by the cancer just being there. They're taken out and they're manufactured in a sterile environment, where their surface is being changed to what's called a CAR; which stands for Chimeric antigen receptor. It's a key that hangs out from the cells that are being engineered by molecular biology treatment and they're getting turned on with what are called closed stimulatory agents or mechanisms. They're then given back to the same patient that donated them, except that these cells now, instead of being their normal cells, are hyperactive cells. They are turned on. They're ready to go.

As soon as the key; that was built by the scientists and the manufacturing process; actually these cells circulate around; finds where it fits on the cancer cell; because that's where it's specifically designed, on the cancer cell; it binds. Then, it puts out chemicals that kill the cancer cells.

This has been extremely effective, and as I mentioned, two CAR T cell therapies have been approved. They're both against the same cancer type; in that it is lymphomas or lymphocytic leukaemia. One’s in children and one's in a adults, and the responses have been 70, 75, 80, 85% or so of the tumours shrink, many of which have gone away or what we call a complete remission. It's quite remarkable, and for these patients has extended their lives and maybe some of them will live for a much longer period of time if they were able to get rid of all of the cancer cells remaining in the patient.

So, it's a very important treatment. One of the problems is that these anti-cancer cells that have been activated in the manufacturing process actually are so active that they cause toxicities by the amount of chemicals they release to kill the cancer cells. These get into the system and make the patient feel very sick. Fortunately, the University of Pennsylvania; which is one of the inventors of these CAR T cells; found another drug that has actually approved that can calm down these side effects. So, these side effects, thought they can be extremely troublesome to the patient, putting them potentially even in the ICU, can now be often treated with an approved drug that makes it much more manageable for these therapies. That's why they got approved, because the benefit of getting these cells with the management principles that we've just learned in the last couple of years has made the risks to the patient manageable, so that the ratio of benefit to risk outweighs the risk. The drugs were approved for very serious relapse diseases that have no potential for being cured by past therapies.

So, this is really a dramatic improvement. Now, these types of therapies probably will and are being experimented with in other types of cancers that are now, and there'll be more in the future. The anticipation is that there will be activity. It may or may not be as active as it is in these types of cancers that are now approved, and so this will become part of a combination; most likely of treatments that will be given to other cancers in the future. Those will be examined over the next few years, probably the next decade, of different cancers being treated with different CAR T cells.

Linda: What is it about the types of cancers that the CAR T cells are approved in now? What is it about them that makes them respond so well versus some of the other types of cancers?

Dr. Messerschmidt: See, the present cancers where they're approved; lymphomas and leukaemias; have the same types of cells, where the key fits is very well studied and very well understood and very specific to the types of tumours; these lymphomas or leukaemias; that are being treated. Some of the other biomarkers on other tumour cells are not as well understood but are being now examined much more closely. Probably in some of these, they will be less clear, exactly, as to what's the best one to train the CAR T cells to go after. So, the part of the science that still has to be figured out is what is the best thing to train these CAR T cells to go after; because when they do connect, they do kill.

Not all tumours are as easy as the present cell. So, there are some tougher questions to answer when you're talking about lung cancer or breast cancer or some of those. It is believed that this will work in those. It's just going to take a little bit more thinking and development.

Linda: So, what are the side effects from the CAR Ts? You mentioned that they can be pretty toxic. What do patients experience with a CAR T?

Dr. Messerschmidt: Well, the CAR T cells, in the chemicals that they release in their process of killing the cancer cells, lead to a very common side effect that is described as cytokine’s storm or cytokine release syndrome. Cytokines are molecules that are released by the CAR T cells and by the cancer cells as they're dying, that cause a lot of things; ranging from fevers and chills all the way to a trouble breathing and blood pressure changes; and that's why it's called storm or release syndrome. It's a syndrome of a lot of normal physiologic changes that occur all at once. The patients can end up in the intensive care unit, have their blood pressures supported, some of their organ function supported, but if we give this approved drug against what's called IL6; which is the specific cytokine; it turns out we could really minimize or decrease the cytokine release syndrome activity. There are probably going to be other drugs to counteract different kinds of cytokines that will hopefully make it even more tolerable in the future. Does that answer that question?

Linda: Yep, it does. So, we've got two minutes before we go to our final break and I know we didn't really go into the side effects for the checkpoint inhibitors, but I just want to make sure that we at least touch on the fact that if someone is listening to the call today and they are on an immunotherapy agent and they do have a side effect, it is important for them to call their healthcare team. In particular, if you go into the emergency room for a problem, it's important for you to make sure and tell that emergency room staff that you're receiving an immunotherapy agent because you may be treated differently than you would be if you were on traditional chemotherapy. Is that correct?

Dr. Messerschmidt: That is correct because the checkpoints actually allow some normal cells, which are normally inhibited from reacting against normal tissue, to react. So, you can get reactions against your skin, which is very common, to get rashes or diarrhoea or other side effects that are caused directly by the medicine. These are called autoimmune affects; meaning the normal cells are going against normal tissues, the normal immune cells, and that that's what's leading to these specific side effects associated with immunotherapy.

Linda: Great. Well, thank you. Dr. Messerschmidt, thank you so much for joining us today. You've been incredibly helpful to help us understand this new and exciting option for patients.

Dr. Messerschmidt: That's my pleasure. Thank you very much.

Linda: We appreciate having you, and we will be going to a commercial break. After the break, Elizabeth Franklin, the Cancer Support Community’s Executive Director for the Cancer Policy Institute, will join us. This is Frankly Speaking About Cancer and we'll be right back.

Opinions, options, answers. You're listening to Voice America: Health and Wellness.

Effective cancer treatment requires more than just medication or surgery. For the country’s 12 million cancer survivors and their loved ones, the social and emotional challenges of adapting to life with cancer are on-going; how to handle co-workers’ questions, how to get comfortable with new physical realities, how to reassure worried family members, or explain to friends your priorities have changed. The Cancer Support Community is ready to help by providing free counselling, education, and hope for survivors and their caregivers, whether online or at over 100 locations around the world. The Cancer Support Community is ready to offer the support you need to live a better life with cancer. For more information on support groups, publications, nutrition, exercise programs and more, call 1-888-793-9355 or visit us online at www.cancersupportcommunity.org. That's cancersupportcommunity.org. The Cancer Support Community, a global network of education and hope.

Cancer Support Community is proud to be a partner of Magnolia Meals At Home; a new pilot program that aims to help patients by providing nourishing meals to households affected by breast cancer, so loved ones can spend more quality time together. This program is currently available in and around two pilot cities and over Massachusetts and Woodcliff Lake, New Jersey. Participants will receive one delivery of meals every month for up to six months when enrolled in the program. Each delivery includes up to seven meals designed to help meet the nutritional needs of people living with breast cancer and 10 meals for family members. This novel program is brought to you by the Asia Women's Oncology Program; Magnolia, Cancer Care, the Cancer Support, and Meals on Wheels Association of America. To find out if you or loved ones are eligible, visit online at www.magnoliamealsathome.com or call 617-733-5848.

Cancer. It's a lonely word. Terms I don't understand; choices I never thought I'd have to make. But, there is hope and help, support from cancer survivors, links to research and clinical trials, and help with finances and access to care. All behind you; a Breakaway from Cancer created by Amgen, to empower cancer patients. The Cancer Support Community is proud to be a partner of Breakaway from Cancer.

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You're listening to Frankly Speaking About Cancer with the Cancer Support Community, an inspirational program offering the resources you need to live a better life with cancer. Now, here's your host, Kim Thiboldeaux; President and CEO of the Cancer Support Community.

Linda: We're back with Frankly Speaking About Cancer, and I am Linda House. I'm your guest host for Kim Thiboldeaux, who will be back with you next week. Right now we're moving to our fourth segment and we are lucky to have Elizabeth Franklin joining us. Elizabeth is the Executive Director of the Cancer Policy Institute at the Cancer Support Community, where she is responsible for all aspects of the institute, including policy priorities to effectively advocate for positive change for people affected by cancer. We, at the Cancer Support Community, like to think that Elizabeth is taking what we learned from the heart of our organization; which is our affiliate network and our service delivery arm; along with the head of the organization; which is our research and training institute; and really bring those two together to help policymakers understand what patients and families are experiencing as they're going through their cancer journey. Elizabeth was formerly director of policy and engagement at the George Washington University Cancer Institute, and she is currently pursuing her doctorate at the University of Maryland School of Social Work. Welcome to the show, Elizabeth.

Elizabeth: Hey. Thanks, Linda. I appreciate you having me.

Linda: So, you are a social worker by training and practice and, you know, it's been invaluable to have your skill set in the conversations on patient access. So, talk to us about what you hear from patients as their top concerns after a cancer diagnosis.

Elizabeth: Sure. So, as you mentioned, I'm a social worker by training. I have been a social worker for over a decade now and that experience really lends itself well to the policy work that I'm doing. As you know, Linda, as a previous oncology nurse, most patients are completely unprepared for a diagnosis of cancer. Even though cancer impacts one in two men and one in three women, it's very challenging for any of us to be prepared for a doctor to give us that news.

So, initially I think that the most common reaction is a feeling of fear. There are so many decisions to be made and those choices can feel overwhelming. I think earlier in the session, all of the amazing content that we shared, is wonderful information for patients, but it can really illustrate kind of the mass amount of information that's out there that we need to weed through the patients. Treatments can seem scary because of side effects such as pain or unpleasant feelings, like nausea, or the ways in which they can alter our appearance, and diagnosis of cancer makes us think about our own mortality and some patients may not be able to process the news or maybe at a loss and can't ask their doctor all of the questions that they have.

So, overall, I think that when patients are first diagnosed, they may have an initial hope for a cure or to live a long life. Many patients are worried about their families, both protecting their families’ emotions and ensuring that the family will be okay no matter what happens. So, as treatment decisions are being made, many patients are concerned with a variety of different things, and one of those things is the ability to pay for their care.

Those are just a few of the things that patients grapple with as they are diagnosed and ultimately all of these concerns can result in stress, anxiety, and depression; and that's why our organization, the Cancer Support Community, exists because we look at the full patient experience: not just the medical or physical side of things, but also the social and emotional side to make sure that patients are receiving the full range of care and services that they need.

Linda: Is immunotherapy widely available to patients everywhere or do they have to go to a specific NCI or academic medical centres?

Elizabeth: So, this is a great question because the vast majority of cancer patients are treated within their own communities and many of them are not at large urban cancer centres, which again, makes this question incredibly important. Many patients are seeing commercials for immunotherapies online or on the news or reading news stories, and it can lead them to believe that they can be cured with next grade immunotherapy; and as we talked about on previous segments, not everyone is necessarily a candidate for immunotherapy.

Specifically, when you talk about immunotherapies, like CAR T, it's very specific who actually qualifies or who's a good candidate for that. So, it depends on the type of treatment, but immunotherapies are often given in specialized cancer centres. They are sometimes in large urban centres, but they can also be in communities around the country. For patients who live in more rural or remote areas, it can be more difficult to access these treatments in their own backyards.

So, it's important for patients to have conversations with their providers regarding their treatment options, both where they're currently receiving treatment as well as their potential to travel if possible. It's very important for patients who have the potential to be in a clinical trial or to receive CAR T to understand that those are only offered at certain cancer centres around the country, and that's because their T cells are actually collected at the cancer centre. They're sent to a laboratory, re-engineered, and then sent back to be put back into the patient's body.

So, when we're talking about CAR T, that's much more specific and you can only receive that in certain places. The Cancer Support Community is busy developing materials for patients and providers so that we can respond to the needs of patients in all communities, because we want patients to have the information, have their questions answered and; as was mentioned earlier; once more patients have access to these types of treatments, we want to have them armed and ready with information to help them make the right choices for themselves.

Linda: So, let's talk just a little bit about cost and affordability and, you know, we hear so much about the high price of some of these immunotherapy options. So, how are patients paying for their treatment and what type of financial assistance would be available for patients and their families?

Elizabeth: The cost of cancer care throughout time, but it's really sort of ramping up recently with immunotherapy and with CAR T, poses a barrier to many patients. At the Cancer Support Community, we believe in a patient empowerment model. In other words, we work to help patients become their own best advocate, as you very well know. So, as I stated earlier, a cancer diagnosis is really scary and overwhelming and when you add in the cost of care, it just makes it even more so. There's a concept called the financial toxicity; which means that patients experience financial challenges stemming from their healthcare costs, and this can lead to behaviours that put the patient at physical, emotional, and financial risk. They may forego treatment, they may skip doses, they may exhaust their savings, or even face bankruptcy, and so that's the kind of thing we don't want to see happen.

Our research and training institute has found that among melanoma survivors, a substantial proportion experience a financial burden that impacts their quality of life. This finding holds across sort of all types of cancer and particularly, again, with immunotherapies and with CAR T therapies that could continue to grow. So, we encourage patients, first and foremost, to have a conversation with their healthcare team about the cost of care. They need to understand things like their copayments, coinsurance, premiums and the overall out of pocket costs. They need to contact their insurance company, talk with a loved one, really try and find answers to those questions so they aren't surprised once treatment has begun.

Then there are also numerous programs available to help assist patients. The Cancer Support Community has a helpline that's open from 9:00 AM to 9:00 PM. We have a financial navigator who can help answer questions and we also offer a program called Open to Option, which can help patients identify their goals in seeking therapy and consider the benefits to the therapies, as well as a range of different side effects and risks.

Finally, there are other organizations that offer financial assistance or navigation like the Patient Advocate Foundation or the Leukaemia and Lymphoma Society, and many pharmaceutical companies also offer patient assistance. So, patients are encouraged to seek out those options to make sure that they address the cost issue upfront and continually throughout care.

Linda: Let me just throw a number out there. So, the cancer support helpline, which is 1-888-793-9355, is a great resource for our listeners, if they have questions about financial toxicity or where they might receive support or really any question. We could either help them directly or help direct them to services that could provide assistance for that financial need. We will make sure to repeat that at the end of the show so that you'll have that.

So, Elizabeth, what can patients and advocates do in today's challenging political climate to ensure that patients are not written with debt after they finish their treatment? What sort of political activity is happening to create some patient protections?

Elizabeth: Sure. So, I want to go back to a comment that I made earlier about an approach that we use at the Cancer Support Community called patient empowerment. We truly believe that patients should be their own best advocate, and I know sometimes that that can be challenging; especially when you're first dealing with a diagnosis or you're deciding which treatment; but we really find that when cancer survivors, their loved ones, anyone touched by this disease really take a hold of the policy environment and become advocates, it can give them some control over their lives and over their disease, and they find that very empowering.

So, I think, first, it's very important for everyone to stay up to date and aware of policy and advocacy issues that may impact the ways in which we access and pay for care. The most obvious issue right now is healthcare reform. I encourage everyone, even though it can be challenging, to keep up with what's going on in the news and in Congress, to make sure that you're aware of the healthcare debate and how that could possibly impact care. Be in continual contact with your elected officials at both local and federal levels and communicate your concerns about the cost of care, as well as the need for not only insurance coverage, but also the ability to access care.

Oftentimes, we talk about coverage, but we don't talk about access. So, you may have health insurance, but you need to be able to use that health insurance and have things, like essential health benefits, which allow patients to access the chemotherapy, preventive services, lab tests, hospital visits, and things like that. One way that you can do that is to come to the Cancer Support Community website and sign up to become a grassroots advocate. You can receive helpful information and engage in advocacy opportunities to connect with your elected officials and make your voices heard on issues just like this.

Linda, like you mentioned in the beginning, we are working very hard to make sure that patients are at the forefront of all healthcare policies at both the federal and state levels, and affiliates across the nation are involved in policy issues at the local and state level. At the cancer policy institute, we're providing a host of different information. We're launching a newsletter in the new year and I strongly encourage everyone listening to this radio show to sign up to be on our grassroots listserv. I think that it really has a great impact on healthcare policy today, but it also can give patients, survivors and their loved ones a sense of control over what's going on with the healthcare debate; and it's probably more important now than ever before.

Linda: That's a great reminder, and just to remind our listeners; www.cancersupportcommunity.org. We'll get you to the site that you're mentioning about becoming a grassroots advocate.

Elizabeth: Perfect.

Linda: Great. So, thank you so much, Elizabeth. We're out of time already; if you can believe that. We appreciate you joining us on the show today. We do also hope that our listeners will go to our website and download information specific to immunotherapy; that is at cancersupportcommunity.org/immunotherapy, and there are plenty of resources there where you can learn about immunotherapy and resources that may help you. I'm going to quickly repeat that telephone number for the helpline. It is 888-793-9355. I'd like to thank you all so much for spending your time with us today. Until next time. Be well, do well, live well.

Thank you for joining us for Frankly Speaking About Cancer, with your host Kim Thiboldeaux. We're here for you every Tuesday afternoon at 1:00 PM Pacific Time, 4:00 PM eastern time on the Voice America: Health and Wellness network. In the meantime, stay connected online at cancersupportcommunity.org. That's cancersupportcommunity.org.