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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.

Kim: Welcome to Frankly Speaking about Cancer, an internet radio show that focuses on informing and inspiring people to live well with cancer. I’m Kim Thiboldeaux, CEO of the Cancer Support Community. The Wellness Community and Guilders 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 100 locations worldwide and online at www.cancersupportcommunity.org. Well we know that clinical trials are extremely important in finding new ways to treat cancer and help patients to live well with their diagnosis. On this episode we’re going to focus on four different and unique stories about participating in clinical trials with four amazing women with firsthand patient experience.

As well as discuss tips for finding a trial that’s right for you, being your own best advocate. And we’re going to discuss how we can overcome common misconceptions about clinical trials. Our first guest today is Mary Claire Beatler. Mary Claire lives in Chicago with her daughter and husband.

And was a participant in our Frankly Speaking about Cancer Clinical Trials Program launched earlier this year. She was diagnosed with acute myeloid leukemia in 2014 and is now in remission. She’s an active volunteer and works with young people and the arts. Welcome to the show Mary Claire.

Mary Claire: Thank you so much for having me.

Kim: I’m also to welcome Barbara Bulow to our show. Barbara holds a PhD from NYU and is a retired psychotherapist who still treats families with young adults facing various mental illnesses. Barbara was diagnosed with cancer in 2011 and is currently on an immunotherapy clinical trial. Barbara we’re so happy to have you back.

Barbara: Thank you.

Kim: Our third guest is Wendy Furan who also participated in our Frankly Speaking about Cancer clinical trials program and photo-shoot in Chicago. Wendy has a degree in biostatistics from the University of North Carolina and currently lives in Chicago where she’s taking a sabbatical to concentrate on her recovery following breast cancer treatment, hi Wendy.

Wendy: Hi.

Kim: And finally I’m happy to welcome back Aide Mills a long time CSC advocate and friend. Aide is a certified social worker and health educator with a special interest in improving communication between providers and patients. She was diagnosed with Stage4 non-small cell lung cancer in February of 2011. Thanks for joining us again Aide.

Aide: Glad to be here.

Kim: Well you each have a unique story that I think our listeners can understand and some of them can relate to. I want to kick off this first segment by having each of you tell us just briefly a little bit about your cancer experience and most importantly how you’re doing today. Aide I’m going to start with you.

As I mentioned in my introduction you were diagnosed with lung cancer in 2011, have been part of several clinical trials which you credit with saving your life. Can you tell us about that Aide?

Aide: Certainly. So in 2011 when I was diagnosed with lung cancer, it was determined ALK positive. None of the drugs that are now approved for being ALK positive or having that mutation were available at that time. So I was initially started on chemotherapy. But it was not long thereafter that one of the first drugs was approved lung cancer for ALK positive lung cancer.

And I was not on that drug during the trial but two and a half years after being on chemotherapy, my cancer recurred. And I needed to start a new treatment for which I’ve been eligible to go on that new drug. But I talked with my doctors and I chose to go on a clinical trial that included that drug, that was newly approved, and a trial that was on their investigation.

Because I really wanted to get the most out of the drug that was newly approved and see if there was anything else to be garnered from another investigational drug. So I was on that for a short period of time before going on to other trials.

Kim: Aide, can you tell our listeners what that means, ALK positive lung cancer?

Aide: Oh it is in lung cancer the doctors have learned that there is more than one type of lung cancer. There’s small cell lung cancer and non-small cell lung cancer. In non-small cell lung cancer there are various mutations where these tissue have a genetic mutation in the way they are formed.

And mine is positive for this one type of mutation. There are several mutations; EGFR positive, Ros1 positive, ALK positive, and a few others. They make up I think maybe 40% in total and the others are general non-small cell lung cancer without any mutation.

Kim: Yeah. And I think more and more Aide I think it’s important that folks start to ask those questions about is it possible that I have a genetic mutation? Is there a biomarker test or some other test that could test for that and perhaps there’s a clinical trial or a treatment plan that would be better for the patient based on what we know their genetics.

Aide: Yes.

Kim: Yeah exactly.

Aide: Exactly that.

Kim: And I’m going to move on because I think it’s a nice segue to you Barbara. Your cancer also developed from a genetic mutation. Can you tell us a little bit more about your diagnosis and your treatment on a trial?

Barbara: Sure. My mother had ovarian cancer at age 83. So in 2008 I had genetic testing and was found to be negative. In 2011 I developed Stage IV Ovarian cancer. So this year my oncologist suggested I again have genetic testing. And things have advanced a lot in those few years. I have a genetic mutation called BRIP1. At this point there are no specific studies for that genetic mutation.

However it is useful for other kinds of treatments. I am now or I was recently on immunotherapy trial, not connected to my genetic mutation but because I had gotten this trial at a research trial. Unfortunately I relapsed while still on immunotherapy. However now I’m on traditional chemotherapy and responding more positively and more quickly maybe because I was on that immunotherapy trial.

Kim: Interesting. Wendy, let me turn to you, you have a medical background and you were diagnosed with breast cancer. Can you tell us about your diagnosis, your treatment, your own experience?

Wendy: Sure. Basically coming back from taking my daughter to college or picking up my daughter from college I found a lump in my breast and it was getting big rapidly. So it was important that we try to do things as fast as possible.

When I went and got diagnosed, they didn’t want to really tell me over the phone what it was. So then I knew from my background that it was probably not one of the better outcomes. And in fact it’s called a Triple Negative breast cancer which means it’s not one of the three more common breast cancers that they know how to treat.

Kim: So tell us a little bit more, then about your treatment.

Wendy: Well basically because I knew it was one of the breast cancers without the really positive outcomes that people expect, I went out to the internet and researched and found a clinical trial, that I thought I would be eligible for. So then when I went in to talk with the oncologist at Northwestern, I brought up the clinical trial.

And I actually became patient number one in it at Northwestern. So I wanted to make sure that I have the best possible outcome I could get, so I went actively searching for a clinical trial because I thought that helped me the most.

Kim: So Mary Claire let me get your story here. You were diagnosed with AML, Acute Myeloid Leukemia which is fairly rare for someone your age. Can you tell us about how you were diagnosed and what your treatment has been like?

Mary Claire: Absolutely. So I was diagnosed in 2014. At the time I was typical busy mum with a four year-old burning the candle at both ends and thought my symptoms which consisted of headaches and dizziness were just stress. I went to urgent care and a simple blood test revealed that it was AML. I think my doctor was more shocked than I was.

They just couldn’t believe it. It’s very rare for someone in their thirties to have leukemia, to have AML, it’s a much more common cancer for children and for older adults or as a secondary cancer. Within five hours of diagnosis I was checked into the hospital at University of Chicago and began treatment. So they don’t have stages for liquid cancers and blood cancer.

So treatment begins immediately. They said if I didn’t start treatment at that point in time it probably was a matter of weeks until I would have no longer been with us. So things were rather whirlwind, everything stopped in my life for a good solid year while I went through induction chemo, inevitably a stem cell transplant.

So I had a very routine course of care, things went wonderfully, things went beautifully. They game me all the chemo in the world it seemed and a complete stranger gave me his stem cells. So I’m very lucky and happy to be alive. My experience with the clinical trials ended up happening once I was in remission. My form of cancer has a very high likelihood of returning.

So I was part of a study to vaccinate myself, to use immunotherapy against recurrence. My genetic makeup made me a good candidate for the WT1 study which is a Stage III study for folks like myself who are in remission from AML and want to stay that way. So that’s my experience.

Kim: Just before we get to our first break here Mary Claire what does the study consist of?

Mary Claire: Sure so I received 70 injections. So more than just a shot, when you think of a shot you think of something that happens rather quickly. These are the biggest shots you could imagine. But I had zero side effects beyond a lump in my arm once a week. But it was more time back at the clinic but it was suggested by my oncologist. And through our research really found to be a good option for me and for folks like myself.

Kim: It’s great. Boy we have so much to get to hear. You guys have four amazing, unique, powerful stories. This is Frankly Speaking About Cancer we’re learning more about clinical trials from a patients’ perspective. We have four wonderful women on the show today. We’ve got a lot more to cover we just had a chance to hear from Aide, Barbara, Wendy and Mary Claire about their stories, to sort of give some of that background and some of that foundation.

We’re going to talk a little bit about our cancer support community, our Frankly Speaking About Cancer clinical trials program, the importance of participation in trials. And really do some myth busting on the show today and really get to some of the facts here. This is Frankly Speaking About Cancer, I’m Kim Thibodeaux. We’re going to take a quick break, don’t go away we’ll be right back.

Effective cancer treatment requires more than just medication or surgery. For the country’s 12million 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.

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, Andover 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 AZI Women’s Oncology Program Magnolia, Cancer Care, the Cancer Support Community 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.

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 trains 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.

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.

Kim: Welcome back to Frankly Speaking About Cancer I’m your host Kim Thiboldeaux. Today’s show is sponsored in part by Bristol-Meyers Squibb, Novocure and Taiho Oncology. We’re talking today with Aide Mills, Wendy Furan, Mary Claire Beatle and Barbara Bulow. They each have been part of a cancer clinical trial and are here today to share their firsthand experience on how clinical trials impact patients.

Aide as we begin to talk more about clinical trials in the segment today, can you- I know you’ve talked quite a bit on this subject- give our listeners just a brief overview of what a clinical trial is? I know some folks really may be not listening today maybe they don’t know what a clinical trial is or that it’s even an option for the. I want to emphasize why trials are so important and what are some of the common misconceptions Aide regarding participation in clinical trials.

Aide: Sure. I think that- just to start with that last point about a misconception.

Kim: Yes.

Aide: Is I think people are afraid that they’re not going to get the same care that they would get if they were getting standard therapy. And in fact I found that you get a great deal of attention and care. And in some cases more care on a clinical trial because you have more eyes watching you. So I know that when I started the clinical trial, the standard drugs that I was taking, remember it was just approved.

But it was this newly approved drug plus investigational drug, taking an oral drug plus an IV therapy. And I had a nurse manager of the clinical trial in addition to my doctor and my IV nurse who’s taking care of me. There was yet another nurse who was watching over the impact of the trial and following me up with phone calls, how I was feeling.

From my lab reports to personally how I was doing with the medication. So it was a great deal of attention and I think many people are afraid that they’re not going to get that attention that they’re used to for their cancer care teams. The other thing is I think people are afraid they’re going to get a placebo and a sugar pill.

And in fact the trials are comparing drugs to standard therapies or testing a new drug that is an actual drug. Nobody is getting a sugar pill, they’re getting actual therapy. And I think people are afraid of that as well. And I think another thing that’s difficult for people is to potentially change their treatment team.

And that does happen if you choose to get your treatment through a trial at another center right, or a cancer center. But I think that that’s something that you need to talk about with your family and with your doctor. And it’s a very personal decision and it can be the right decision for many people to switch doctors or to not change. But then potentially come back to that change depending on where you stand in the trial.

Kim: Right. So Wendy I think Aide brings up some great points and maybe you can help us talk a little bit more about really what we’re studying in these cancer clinical trials, and what are some of the types of trials that are out there for folks with cancer, folks who have or have had a cancer diagnosis Wendy.

Wendy: Well Aide brings up some very good points. The tests today are against whatever the standard of treatment, it’s no longer no treatment versus a treatment. And that’s something everybody needs to be aware of. You’re going to get either the state of the art treatment or what they are exploring that they think is going to be a better treatment.

So you’re actually in a pretty good situation. And it’s how these drugs get tested in clinical trials, they’re also testing some things on what are some ways that can help you cope with some of the side effects that we get in cancer or from the cancer treatment. They’ve got some clinical trials on whether even say [Inaudible] [22:07] can help you cope with it.

They’ve got some trials that happened which show that yoga is a very good form of exercise for people with cancer, because not only does it help you exercise it helps you mentally through chakra. So it’s not just drugs that get tested, it could be things that are helping you cope or things that could be helpful in the family situation.

Kim: Yeah and I think that- I just want to turn to Mary Claire because Mary Claire I think you had a little bit of a different experience. Because we know that when someone finds out that they have cancer, that one of the first things they do is that they do as much research as they possibly can.

And oftentimes folks have days, have weeks to gather that information, get a second opinion, make those treatment decisions. You did not have the luxury of that time. And that sounds like kind of pretty frightening place to be. How did you process that, did you have to have a sort of faith in team that you had in front of you? What was that like for you?

Mary Claire: Sure. So it really helps to be married to a librarian who’s also a researcher. So my husband’s office is one block from where I was stationed in my hospital room for two, six-week blocks. And yeah so he’s an academic librarian and we live in Hyde Park we are part of the Chicago community. And it was really awesome to be able to get the word out rather quickly and say to my husband and to friends that we’re going through this, we need some help.

And someone who became a great friend who was just an acquaintance at the time is my good friend who is a pharmacist but an oncology pharmacist stepped and she said, “Look I’m going to come and we’re going to go through everything and I’ll hold your hand through this. So we really kind of assembled our own team in those early days to figure things out.

There were a lot of resources available at University of Chicago as well. But I think understanding from day one what clinical trials are, how research operates. My downstairs neighbors runs a lab at the University of Chicago so I have a general understanding to begin with of how this kind of research works and ethically how it works.

So I was very open from day one and I think I did my first clinical trial the second day I was in the hospital like right after I’d been diagnosed. And it was this little perky medical student popped and she asked me five questions on an iPad about my room and the placement of the bed.

Something really basic and easy and had to do with the lighting or something. And she didn’t want to bother me but I was just excited to talk to someone who wasn’t going to give me bad news or give me those big puppy dog I’m-so-sorry-eyes. So in some ways that was a really positive interaction too, yeah.

Kim: And Mary Claire I just want to say that obviously Aide and Wendy have started to give a good overview of clinical trials, some of the misconceptions I know. We talked about one is folks think that there’s maybe a placebo in a cancer treatment trial which there almost never is. Another of misconception that folks have is that they believe that you only would participate in a clinical trial if everything else has failed and there was nothing else for you.

Sort of a Hail Mary in that scenario, which we certainly know is not the case. And we have really encouraged folks to ask about a trial when they are diagnosed with cancer. But your trial was a little bit different as well. Your trial was a trial that started after your treatment ended, is that right?

Mary Claire: Absolutely. So after my treatment had ended, after I was off immunosuppressant anti-rejection drugs for my stem cell transplant, what many people call a bone marrow transplant, I was approached by my oncologist with actually a range of different clinical trial options. Things that were actively being studied and researched on AML patients who’re in remission at the University of Chicago.

And she said both for of them were vaccine based, were both immunotherapy. Immunotherapy is really big at most research institutions right now, University of Chicago is certainly in that camp. And this is the WT1 study. And the goal is to teach my immune system to fight any instance of recurrence so I had a series of injections.

They were uncomfortable but it really did and this is an odd thing to think about but for me I wasn’t ready to go back to work. I was still unbelievably fatigued and mentally exhausted, I was more comfortable at my doctor’s office than I was going back to work. I needed a few months, a few bits of time to kind of slowly get back into the real world.

And by being on this clinical trial, by still being monitored very closely, it gave that comfort and support that I needed to kind of bridge back to normal life. So it was helpful in that way and then the hope is that it will be helpful and make sure that I don’t relapse. But only time will tell that.

Kim: Absolutely. And Wendy is there a part of you just- we’re almost at our break here but a part of you that also thinks like boy I’m contributing to the science. Maybe my experience and what is run for my own experience may actually help or benefit others into the future. Is that something that’s crossed your mind?

Wendy: Oh definitely. That’s really what I was so happy about is finding this study and then being an early participant in it and watching the good successes that they’ve had among the people after me. I’m hopeful that this drug will be approved by the FDA and then be out there for everybody to use to [Inaudible] [28:22] this.

But if the people before us had not participated in clinical trials we wouldn’t know about some of the great successes that they’ve had in I think all the diseases or all the cancers that the participants today have.

Kim: Yeah and I think that altruistic piece is also a piece that I’ve heard a lot of patients talk about that hopefully it’s going to help me. But I also hope that it’s going to help others into the future and that’s a part of contributing to the greater body of science. This is Frankly Speaking About Cancer.

We’re talking about cancer clinical trials and the importance of participation in clinical trials. And we’re bringing the perspectives of four different women who have participated in trials. We’re going to take a quick break, don’t go away. We’ll be right back.

The future of online TV is here. View exclusive content from your favorite talk radio hosts, and new programs that you can’t see anywhere else. Visit voiceamerica.tv today.

Effective cancer treatment requires more than just medication or surgery. For the country’s 12million 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.

Now you don’t have to stay linked to your desktop or laptop, take Voice America on the go and listen anywhere. Get our mobile app for iPhone, BlackBerry or Android at the Apple iTunes Appstore, BlackBerry Appworld or Android Market.

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.

Kim: We’re back, Frankly Speaking About Cancer I’m your host Kim Thiboldeaux. Today’s show is sponsored by Celgene Corporation, EMD Serono and Takeda Oncology. We learn a lot about cancer and cancer treatment from the patients themselves and that is especially the case with clinical trials. Here to help us to learn more about the importance of participating in clinical trials are four people who themselves have been part of a clinical trial.

Barbara Bulow, Mary Claire Beatler, Wendy Furan and Aide Mills. Barbara I want to start this segment with you. What led to your participation in an immunotherapy clinical trial? Walk us through that as a patient; how did it come up, how was it explained to you? Did you know that the clinical trial would not have a placebo, the cancer treatment trial? Just walk us through that as just sort of a decision making consumer in that process.

Barbara: As I mentioned, I have ovarian cancer stage four. And for me like many of the people that also have this, that means a chronic illness with treatment and then a break and then maybe another treatment. So I was very excited to be on this immunotherapy clinical trial because of two reasons. One that was just mentioned about it’s adding to science.

And the second is that perhaps this could be a treatment, it would have less side effects than I had experienced and other people experienced with the more traditional treatments. Even though it did not help me at the time, I’m very glad that I was part of it because it does benefit other people. And as I mentioned it may help the treatment that I’m getting now which is more conventional.

Kim: And how was it raised with you? How was it brought to your attention? How was it explained to you? Really from a very sort of nuts and bolts perspective.

Barbara: My oncologist referred me to Memorial Sloan Kettering Hospital. I went there last summer they didn’t have a study for me. And then when I completed some treatment again we contacted them and they thought they had a study for me. So I was in remission at that time and there was an immunotherapy trial that I should have been eligible for.

But unfortunately I started I had relapsed and I was put on the trial I was on. I was also the number one guinea pig I should say. But it was explained to me in a thorough way, they were very closely monitoring me. And it was a combination of an immunotherapy drug that has been helpful with other kinds of cancers, and a vaccine that hadn’t been tried before. So I felt very comfortable being part of the study.

Kim: Being part of the study. And Wendy how about you, how was the topic of clinical trials raised with you, with your healthcare team? What was that conversation like? What were questions, concerns? What was the decision making process for you?

Wendy: Well I feel very fortunate that here in Chicago we’ve got some great advanced clinical trial teams that are working with cancer. So it wasn’t a hard conversation to have. I was very open to having a clinical trial and actually brought it up with my oncologist who I think was pleasantly surprised. And usually what I do is I try to talk to them as a regular person but you should not bring up my background.

And in that way, they’re thinking of it in a more normal way, this is a potential person, they could benefit from this trial. I think everybody needs to be their best advocate and not try to sit back and hope someone else comes up with things for themselves. If you can do a little bit of research, find out a little bit about what could be trials in your area and be proactive, step out there.

Kim: Aide, I know that I’ve heard you say that you feel that a clinical trial really saved your life. What are the conversations that you have with other patients who are thinking about a trial, looking at a trial or maybe raise some of the concerns of myths or things that we’ve discussed. What’s the conversation that you have with them?

Aide: Well I think usually when I do work on something like this if I’m talking to them about where are they in their cancer journey? For some people there are clinical trials that you need to do immediately. You’re not supposed to have had any other treatments. And others they will allow you to do them after you’ve concluded other treatments or if you’ve gotten remission or a new diagnosis.

But I remind people that only could you be getting something new and better; the new and improved cancer treatments, you’re definitely getting a good treatment and you’re getting lots of people looking at your test results, lots of extra eyes. You’re getting a lot of TLC, as other people on the panel have mentioned.

And you’re getting the chance of new tests that you maybe wouldn’t have had otherwise. A lot of people are concerned about the extra cost that every family experiences with a cancer diagnosis. And at least on my trial they took up all the co-pay. So that really relieved a lot of the cost for me.

And my social worker found a grant that I could apply for that actually paid for my parking and transportation costs, which when you’re going in on a daily basis could really add up. So there are other benefits being in a clinical other than just getting one of the best possible treatments that you could get.

Kim: Right. And Aide Mills I know you have a background particularly in social and health education. I know you’re an advocate, I know you talk a lot about your own participation in clinical trials. Tell me about your interactions with patients, consumers who’re thinking about participating in a trial and really what that discussion is like.

Aide: Well I try to tell my peers really to think about what their goals are and what their needs are. And to bring that up with their doctors and nurses and/or social workers, to in some cases with those people to practice when talking to the doctors. In fact they’re nervous about that. But to really just think about what’s their goal of therapy, what’s their need to get their therapy.

And also to consider what are their expectations so that they can be honest with their doctor, what they’re looking for. And for some people travel is beyond their fort so travelling for a clinical trial is more than they can endure. But for somebody they’ll do all the travel they need and I’ve met so many people that have travelled far.

When I’m at my academic treatment center, I’m meeting people from all around the country. And I myself travel to be assessed for a clinical trial. I didn’t end up going on it but I ended up travelling to go for a trial that wasn’t available at my center. So I think people need to think about that when they’re looking at trials or their doctor is considering one for them. Or they’re thinking is this right for them as somebody else on the call said.

Depending on where they are on their journey, I mean I think the other thing to really make clear is that a clinical trial is not just when you’re at the end of the road with your treatment, or you’ve heard that there’s nothing else to do. As you mentioned it’s not just a Hail Mary. It may be but it’s not just that. I mean I went on my first trial two and a half years ago, no three years ago at this point.

So that’s important but I think as somebody just brought up it’s really important to ask questions like what are the costs that are going to be incurred if I go on this trial. And you need to think about these out of pocket expenses as well. And I was fortunate that one of the physicians in Boston she had said to me, “If you go on this trial, we have housing support and travel support if you should need it.”

And she made that available to me right up front. And I don’t think people are forced to ask that and they need to know it’s okay to ask it, they should ask it. If they don’t use it, they don’t use it. They need to know what’s available to use.

Kim: What’s available and ask all those questions, great advice. Mary Claire as we’re getting up to our next break for you obviously we’re talking about the importance of participating in trials, asking if there might be a trial that’s right for you that you qualify for. But as someone who was diagnosed as a young adult can you talk about why it’s particularly important for adolescents and young adults to consider being part of a clinical trial?

Mary Claire: Absolutely that’s a great question. It’s so important because so few young people participate in trials. And because of that, our five years’ survival rates have gone since 1980. Only 9% of AYAs participate in these trials and that’s people from-and AYA is someone who is 18 to 40, 18 to 39 depending upon which clinic you’re looking at.

And I fully understand why, people want to get on with their lives, people want to go back to their children to college to whatever that is beckoning them from the other side of that IV pole. But this is really important and there’s an ethical and a moral cost not participating in these trials. So my hope is that more individuals will strongly consider this empowering experience of participating in a trial. Hopefully really changing those numbers.

Kim: Yeah and I would probably just add quick Mary Claire that probably one of the reasons also for low participation on the part of adolescents and young adults is that the greatest risk factor for cancer is the age. That it is unusual to be diagnosed with cancer in your 20s or your 30s. So that would certainly reduce the pool of potential participants in a clinical trial.

Mary Claire: Sure.

Kim: Yeah, just from a pure statistical standpoint I think sometimes folks forget that the greatest risk factor for cancer is age. So that would certainly decrease participation but I think you make some very strong points about why it’s important to participate. We’ve got more to cover here folks, this is Frankly Speaking About Cancer. We’re going to take a very quick break but don’t go away we’ll be right back.

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Effective cancer treatment requires more than just medication or surgery. For the country’s 12million 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.

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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.

Kim: We’re back with Frankly Speaking About Cancer, I’m your host Kim Thiboldeaux. Today’s show has been sponsored in part by Lilly Oncology and Insight Corporation. We’re closing out our show on clinical trials from the patients’ perspective with Wendy Furan, Aide Mills, Barbara Bulow and Mary Claire Beatler.

Aide I want to start our last segment by focusing on the future for a moment. This summer you and I both had the immense honor of being part of Vice President Joe Biden’s Moon Shot Summit in Washington DC, really this idea that we want to really advance the innovation, 10 years of progress in five years’ time.

As you know Aide our view on this is it’s not going to happen without the patient and it’s not going to happen without patients participating in clinical trials. Just give us a moment of your observations on that Moonshot Summit and this initiative Aide.

Aide: Oh the Moonshot Summit was an honor to be there, and to be amidst a roomful of hundreds of very smart, dedicated passionate people who wanted to make a difference for the world of cancer and help people. And I was just so moved by that whole day, it was heartwarming. And I was energized by the activities going on and the interest of people to break down walls that were causing barriers for moving forward a trial, for getting approvals.

People were willing to do various different innovative activities with each other or each other’s groups and programs and organizations. It’s I think really going to help make a difference, it means we’re working towards making a difference in clinical trials.

Kim: That’s right.

Aide: It’s really very impressive.

Kim: And all four of you are part of that through your own participation. As we get to the end of the show, I just want to ask each of you, any advice or tips that you have for our listeners if they’re wondering about a trial, thinking about a trial and other thoughts or resources, websites you might guide them to, resources that you can recommend for our listeners who still may have some uncertainty about clinical trials. Let me start with you Mary Claire, your own tips or advice for our listeners today.

Mary Claire: Absolutely. I have found some really great resources from within BMT Infonet and so that’s specific to folks with liquid cancers. And there’s a lot of access through their website as well as their yearly conference that is specifically for patients, and getting that information out there and getting access.

I also really wholeheartedly recommend the mentoring programs that many different organizations have put together now and connecting yourself to someone who’s been in your shoes but is maybe a year or two out. Imerman Angels is the organization that I’m part of and I do mentoring with. But there are lots of other organizations out there too and there’s some great opportunities to learn more.

Kim: Terrific, great advice. Wendy, how about you? Thoughts for our listeners.

Wendy: Well I want to echo what Mary Claire has said. I use some of the online mentoring services like Imerman Angels and then there’s a special Facebook group that we have for our particular form of breast cancer. There are many resources out there and Google is your friend for when you’re trying to figure out where you can get extra information that is fluid.

There’s new sites, new things popping up all the time that you do want to be careful that they’re legitimate sites, so not just- because again on the internet anybody can anything they want to be. So I try to concentrate to sites that I know are legitimate like the Mayo Clinic’s website the FDAs websites and other as ways of getting more information about things.

And don’t be afraid of clinical trials they can really help you. You get that increased monitoring and you really get the new ways of thinking, whatever is the current ways of thinking that they have that’s the best way of treating your cancer. So I would highly encourage clinical trials for everyone to at least consider.

Kim: Great, terrific. Barbara how about you?

Barbara: Well I think everybody who has cancer now should be excited about all the advances in the field and clinical trials is a big part of that with new drugs and so on. Personally I have found going on the Inspire Website has been helpful. And there’s a website I just discovered called Cancer Commons where you can write up your own cancer journey and they will suggest various clinical trials.

Kim: Interesting, great. Aide, what thoughts do you have for our listeners today?

Aide: I would say that if they have not reviewed your Frankly Series on Clinical Trials they really need to look at that material. It’s so well done and so clear. And I think that if you have you could go to some of the specific advocacy organizations about a clinical trial for your type of cancer. So I would go to something from one of the lung cancer organizations and get some more information there.

Kim: Terrific yes and I know a lot of those diagnosis specific groups are tracking trials and listing trials. So that’s certainly a good way to go and I think I’d just encourage folks also to keep their eyes open for the news that is coming out of advances with the Moonshot Initiative. I know the government and CIFCA are looking for ways to improve information on clinical trials or they’re trying to make it easier for folks to search for trials and access trials.

And I also think it’s important to note and I think you guys are a great example of that, that a clinical trial today in cancer may not just be related to your specific diagnosis of cancer, lung cancer or breast cancer or ovarian cancer. But the trial may actually be specific to a particular genetic mutation that you may have or results of a biomarker test.

And I think as the science and the technology does advance the trials will be organized perhaps as much by genetic predisposition as by cancer type in the future. So to be also understanding with your particular type of cancer, should I be getting genetic tests, are there particular biomarker tests that I should be asking for and really understanding the specifics of that I think are critical.

We’re coming to the end of our show, Aide was kind enough to mention and was a speaker at the launch of our new program called Frankly Speaking About Cancer Clinical Trials. This is a new patient education program, we actually brought together 20 organizations from across the country to be our partner in the development and launch of this.

We did a lot of research with patients so this is a program of patients by patients for patients. You can find the information on our website at cancersupportcommunity.org/clinicaltrials. There are several educational pieces there and again it’s all evidence based, all developed with very high scientific rigor.

But it is developed in a way that is intended for patients and for caregivers. So please visit our site, cancersupportcommunity.org/clinicaltrials for that information, or you can call and we can mail those materials to you. You can also call and talk to our helpline, talk to one of our counsellors right now. You can call the phone number, its 888-793-9355.

We have support groups, educational programs, nutrition, exercise, stress reduction at 46 locations around the country. We have a lot of information online and again that helpline number, call and chat with one of our counsellors is 888-793-9355 and that’s cancersupportcommunity.org. I appreciate our amazing panel today.

I appreciate you joining us to share your very powerful stories. I think it was a great learning opportunity on this important topic of clinical trials. And again if you check out our website all of that Frankly Speaking About Cancer Clinical Trials is on the site so check it out. It’s free and it’s available to you today. I want you thank all of our listeners for joining us today for Frankly Speaking About Cancer.

I’m Kim Thiboldeaux from the Cancer Support Community and 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 1PM PT and 4PM ET on the Voice America Health and Wellness Network. In the meantime stay connected online at cancersupportcommunity.org that’s cancersupportcommunity.org.

Thanks again for listening to the preceding program brought to you on The Voice America Health and Wellness Channel. For more information about our network and to check out additional show hosts and topics of interest, please visit voiceamericahealth.com. The Voice America Talk Radio Network is the worldwide leader in live internet talk radio. Visit voiceamerica.com.

The views and ideas expressed on the preceding program are strictly those of the hosts or guests and do not necessarily reflect the views and ideas held by the Voice America Talk Radio Network, its staff and management.

[End of Recording] [55:36]