Understanding The Myeloma Genome and What It Means For Patients

Understanding The Myeloma Genome and What It Means For Patients from Patient Empowerment Network on Vimeo.

Dr. Gareth Morgan, Director of the UAMS Myeloma Institute, discusses new oncogenes in myeloma and importance of testing at the time of myeloma diagnosis to set a treatment plan at the American Society of Hematology (ASH) Conference 2017 in Atlanta.

A How-To On Reading Scientific Papers

“Be skeptical. But when you get proof, accept proof.” – Michael Specter

That quote is from Denialism: How Irrational Thinking Hinders Scientific Progress, Harms the Planet, and Threatens Our Lives, where New Yorker staff writer Michael Specter examined the distrust of science that’s turned discussion of scientific topics into a potential minefield. Some good examples of that minefield are climate change, and childhood vaccinations.

Anyone interested in scientific progress – full disclosure, I’m in that group – needs to understand the ideas being explored in scientific papers, the dispatches from the front lines of scientific thinking and discovery. To arrive at that understanding, you have to be able to understand what you’re reading, and I’ll be the first to admit that isn’t easy.

Scientific papers are written by scientists, for scientists, and follow a set of rules and formal structures that can feel like they’re designed to prevent any understanding by the average Joe/Jane “just plain human.” In this post, my goal is to help anyone interested in, but not formally trained in, science tackle reading – and understanding! – an article in any scientific journal.

10 steps to scientific (article) understanding

  1. Check the source

    • What journal is publishing the article? Check Beall’s List, and if the journal appears there, you can stop reading – it’s a fake journal.
    • Who is the lead author, and what organization or institution is s/he affiliated with? If it’s an established university or research institute (University of Chicago or Scripps Institute, for example), keep reading.
  2. Read the introduction first, not the abstract

    • The introduction will reveal the Big Question, the one that the research project worked to reveal the answer to. For instance, an article in the Christmas 2017 issue of The BMJ reports on research into the effects of pet ownership on human biomarkers of ageing; the introduction clearly lays out the Big Question as “ we examined the prospective link between pet ownership and a selected range of objective biomarkers of ageing proposed for use in large scale population based studies of older people.”
  3. Write out your own summary of what the research was examining

    • This will give you a grasp of why the researchers wanted to ask the Big Question, and a framework for assessing what their answers to that question are.
  4. Identify the null hypothesis

    • The null hypothesis could really be better termed the “nullifiable” hypothesis, since the purpose of the research project is to nullify the hypothesis that there are no differences in possible answers to the Big Question.
    • An example of a null hypothesis is “the world is flat,” which is what Copernicus worked to scientifically disprove a while back. He was successful, but there are some people who still reject his conclusions. (Warning: opening that link might be hazardous to your sanity.)
  5. Look at the approach, and the methods, used in the research study or experiment(s)

    • What did the researchers do to answer the Big Question? What specific experiments did they run?
    • Sketch out diagrams of each experiment or data crunch.
  6. Read the results section of the article

    • Look at the written results, as well as all charts and figures related to those results.
    • What are the sample sizes? Really small sample sizes are a red flag.
    • What results are listed as “significant,” and what as “non-significant”? If you want to totally geek out on this topic, this post will make your geeky day.
  7. Do the results actually answer the Big Question?

    • Using your own judgment, do you think the study authors have answered the question asked in the introduction?
    • Do this before you read the paper’s conclusion.
  8. Does the conclusion make sense, in light of everything you’ve read and evaluated while going through the paper?

    • Do you agree with the conclusion?
    • Can you identify an alternative explanation for the results in the article?
    • What are the next steps the authors see emerging from their research?
  9. Read the abstract at the beginning of the paper

    • In light of the work you did in Steps 1 through 8, does the abstract line up with what the authors said their research purpose was?
    • Does it fit with your own interpretation of the paper?
  10. What are other scientists saying about the paper?

    • Have other scientists written about this paper?
    • What other research is referenced in the paper?
    • Have the authors of that research weighed in on the paper you’re evaluating?

Reading, and understanding, scientific papers takes practice. It’s also fun, if you’re a science nerd, or just interested in new scientific discoveries. And it’s work worth doing, because the more you know, the more likely it is that you yourself might make a discovery that makes a difference.

Finding the Right AML Treatment for Me

Finding the Right AML Treatment for Me from Patient Empowerment Network on Vimeo.

What is personalized medicine, and how can it help AML (acute myeloid leukemia) patients? Broadcasted live from the 2017 ASH (American Society of Hematology) meeting, Patient Power’s Andrew Schorr was joined by AML experts Dr. Gwen Nichols, Executive Vice President and Chief Medical Officer at The Leukemia & Lymphoma Society (LLS), Dr. Ross Levine, the Laurence Joseph Dineen Chair in Leukemia Research at Memorial Sloan Kettering Cancer Center, and Rick Ross, an AML patient advocate. The expert panel shared an overview of the AML news coming out of ASH, an update on personalized medicine options currently available and highlighted helpful resources for patients and their loved ones.

ASH 2017 Roundtable: Multiple Myeloma Research News and Updates From an Expert Panel

ASH 2017 Roundtable: Multiple Myeloma Research News and Updates From an Expert Panel from Patient Empowerment Network on Vimeo.

At the 2017 America Society of Hematology (ASH) annual meeting, a roundtable of myeloma experts share breaking news and the expansion of the treatment armamentarium in and implications for different disease status. The panel includes:

  • Dr. Carol Ann Huff of Johns Hopkins University School of Medicine
  • Dr. Sagar Lonial of Emory University School of Medicine
  • Dr. Suzanne Lentzsch fof New York Presbyterian Hospital/Columbia University Medical Center
  • Jenny Ahlstrom, President and Founder of Myeloma Crowd

ASH 2017 Roundtable: CLL Research News and Updates From an Expert Panel

ASH 2017 Roundtable: CLL Research News and Updates From an Expert Panel from Patient Empowerment Network on Vimeo.

An expert roundtable with Jennifer R. Brown, MD, PhD and William Wierda, MD, PhD to discuss CLL news from the 2017 American Society of Hematology (ASH) meeting in Atlanta.

Patient Profile: Cali Trepkowski

In March 2015, 8 year old Cali Trepkowski vomited on the way to school. She stayed home from school that day, but she seemed to be fine as the day progressed. A few weeks later she vomited again. This happened three more times so her mom Carrie called the pediatrician who determined it was allergies and put Cali on an allergy medicine. But the vomiting continued. The pediatrician said Cali might be lactose intolerant and advised Carrie to take all dairy out of Cali’s diet. But still Cali vomited. In June the pediatrician said to remove all the sugar from Cali’s diet, but the vomiting continued. By July Cali was vomiting every three days. A visit to the emergency room resulted in a gastric diagnosis and a follow up with a gastroenterologist. The gastroenterologist scheduled Cali for an endoscopy on August 14th, but by August 1st she was sleeping all the time and still vomiting so they went to the ER again and Carrie, who was no longer willing to wait to get results, insisted the endoscopy be performed immediately. The endoscopy didn’t provide answers so the ER doctor scheduled a brain MRI for August 14, the original date for the endoscopy. The morning of the MRI Cali woke up and stumbled into a wall. “Her gait was off,” says Carrie who had become increasingly worried about her daughter. The scan revealed that Cali had a 4.5 by 5 centimeter tumor in the back of her brain right up against the brain stem. Cali had cancer — Medulloblastoma, the most common form of malignant brain tumor in children.

Cali was immediately transported to a hospital in Miami, Florida where her surgeon put a drain in her brain to reduce the swelling. It was the swelling that was causing Cali to vomit. On August 17th Cali’s surgeon was able to remove the entire tumor. It was very literally not a day too soon. The surgeon told Carrie that miracles do happen and if they had waited one more day they would very likely have lost Cali.

Four weeks after surgery Cali underwent proton radiation — which Carrie learned is a type of radiation that causes less tissue damage. She says that with traditional radiation all of Cali’s major organs would have been vulnerable but with proton radiation only the top of her kidneys were affected. Then Cali had nine rounds of chemotherapy over 11 months and more than 20 transfusions. In addition, she began speech, occupational, and physical therapies and therapy with the Special Equestrians that helped Cali recover her strength and helped with her balance.

“She truly is a miracle,” says Carrie of her daughter who has some lasting side effects such as slow processing speed, and abstract learning, attention, and balance issues, but overall has had a remarkable recovery. “In the cancer world we’re the lucky ones,” says Carrie who is all too aware of how easily it could have gone the other way for them. “Once it becomes part of your world you see it everywhere. You have to give hope to others going through it.” she says. “I am very adamant about sharing her story and helping others.” Carrie stresses how important it is for parents and patients to press for answers from their doctors. “I knew something wasn’t right,” she says. “I don’t care what a doctor tells you. demand the testing. Don’t wait. Just because they are doctors doesn’t mean they are all knowing.” In Cali’s case so many of her symptoms were overlooked because the doctors she was seeing were not familiar with her type of cancer and because it doesn’t show up in normal blood work. Carrie now knows that when a child throws up in the morning, if it’s not a flu or other virus, it’s a sign of a brain tumor and she wants other parents to know that too.

Cali is 10 now. She’ll be 11 in February. She has an MRI every three months and while she currently has no evidence of disease, the highest chance of relapse is two years post treatment. After five years with no relapse Cali will be “cured” and will have a brain scan once a year for the rest of her life.

Going forward, Carrie says Cali will see an endocrinologist to address the hormonal side effects that accompany treatment. Carrie, who is very proactive in her daughter’s care, suspects a growth issue. “She hasn’t had much growth in two years,” she says. “Children will stop growing when there’s a brain tumor.” Carrie is concerned that without supplemental growth hormone Cali won’t reach a height of five feet. “Your whole world becomes taking care of your child and finding the best treatment,” she says. “I just want her to feel normal.”

As for the rest of the family, things are starting to become what Carrie calls a new normal. Carrie is extremely dedicated to supporting other families in the cancer community, and raising money for cancer research and the Make a Wish Foundation. She and her husband are both teachers and have three other children who Carrie says “didn’t have a mom” while Cali was undergoing treatment and Carrie was focused on caring for her. “I’m finally starting to be able to enjoy things again and I have these other kids here who need their mom,” says Carrie.“We do things differently now. We are building memories. Making as many memories as we can. We do as much as we can and enjoy it. We enjoy life.”

Spotlight on #ASH17

The American Society of Hematology (ASH) is hosting its 59th Annual Meeting and Exposition in Atlanta, Georgia. This event is the world’s most comprehensive hematology event of the year and will take place from December 9 – December 12, 2017.

The meeting will provide an invaluable educational experience and the opportunity to review thousands of scientific abstracts highlighting updates in the hottest topics in hematology. Network with top minds in the field and a global community of more than 25,000 hematology professionals from every subspecialty.

Abstracts

Schedule and Program

Attendee Resources

Meeting Resources

 

During the conference you can follow along with the hashtag #ASH17 for updates and real-time insights. We will also be tweeting the patients’ perspective during #ASH17. Follow us on Twitter to experience it through the eyes of patients.

Living Well With Lung Cancer: What Are the Best Actionable Resources Available for Lung Cancer Patients?

Living Well With Lung Cancer: What Are the Best Actionable Resources Available for Lung Cancer Patients? from Patient Empowerment Network on Vimeo.

What resources are available to me during and after lung cancer treatment? What financial resources are available if my insurance doesn’t cover costs? Can having second-opinion conversations actually be good for your health? Can the role of faith help? Meet lung cancer patient Matt Ellefson, oncology nurse Katie Michelson, and social worker Sandra Manley-Eichler, as they join forces to share how you can most the most of resources available to you today.

[Editor’s note (11/2018): Matt Ellefson passed away after a long battle with lung cancer. Matt was the epitome of what it means to live a purpose-driven life. His work has impacted thousands of people across the world.]


Transcript:

Andrew Schorr:

And greetings from near San Diego—Carlsbad, California. Welcome to this Patient Empowerment Network program produced by Patient Power. I’m Andrew Schorr, your host for the next hour. We have a lot to cover, as we discuss what are the best actionable resources available for lung cancer patients? I’m very excited about our guests today and to bring you the information that you need. I want to thank our financial supporters for this program, and they are, of course, Celgene, Helsinn, Novartis and Genentech; and also, our partners in this program, SURVIVEiT, and the Lung Cancer Awareness Month Coalition. And as you know, as we do this program, this is the very end of Lung Cancer Awareness program. But that needs to go on, day by day, month by month, year after year. And hopefully, as therapies are improved, you can live longer and live better, even if you’ve had a diagnosis of lung cancer. And let’s all pray for cures.

But what resources are available for you as you proceed? That’s what we’re gonna be discussing. Now, if you have a question, or a comment, or a suggestion of something that’s worked for you, send it in now or anytime during the program to lung@patientpower.info. Again, that’s lung@patientpower.info, and we’ll do our best to answer your questions and include your comments. And remember that there will be a replay of this program available soon thereafter, within a few days, and video clips discussing the individual topics that we’ve covered.

Should we get started? Okay. So, I’m in California, but now let’s go all the way over near Sarasota, Florida, Longboat Key, and connect with my friend Matt Ellefson. And he’s been on our programs before. I know Matt really well. And man, Matt, you’ve been living with lung cancer for almost eight years now, the end of this month, with six recurrences along the way.

And of course, you founded SURVIVEiT back in 2013. First of all, thank you for being with us, and you’re looking good. 

Matt Ellefson:   

Well, thank you, Andrew. It’s always a pleasure to be part of your organizations. They’re so informational and helpful to those who need to hear it. Thank you for that.

Andrew Schorr:

Now, we’re talking, Matt, about resources, and certainly, SURVIVEiT is a resource. And you’ve worked with so many other organizations, and you’re aware of it. People with lung cancer today should not feel alone, should they?

Matt Ellefson:   

No, no. Never, never. And that’s one of the biggest things that SURVIVEiT stands for, is nobody should ever face cancer alone. And I don’t care if you have lung cancer or what cancer you have. You should never face it alone. And it’s our goal to be sure that nobody ever faces a cancer diagnosis alone.

Andrew Schorr:

Well, we’re gonna talk more about it. We were dealing—I was talking earlier today with someone else who’s a mentor in the lung cancer community with a more rare subtype, Janet Freeman-Daily, who has the ROS1 mutation. And not everybody knows whether they have that mutation or another. And so, we’ll talk about that. How do you connect with others, and maybe, then, there’s a subcommunity that can help you as you move things forward. So, Matt, it’s a family affair in your family.

There is another guest we have, and I want to go to Katie Michelson, who is with the Cancer Care Institute in Rapid City, South Dakota—your home state, Matt. And Katie’s your niece. Katie, welcome to our program.

Katie Michelson:               

Hi, guys. Thanks for having me.

Andrew Schorr:

Katie, you are very devoted to cancer patients that you see in South Dakota. Would you agree, though, that patients need to speak up when their care team works with them, and that often, there are resources that can help—sometimes financially, emotionally, connecting with other patients and other families that are going through it, and the right care?It’s that relationship, but the resources are there, wouldn’t you agree?

Katie Michelson:               

Right. It’s about building the relationship and having that open communication with your provider and the nurses, pharmacists—everyone within the system.

Andrew Schorr:

Great. Well, communication is important. Now, there are emotional things that go along with it. And that’s where our next guest really comes in, an oncology social worker from our partner, the Lurie Cancer Center, Sandra Manley-Eichler. Sandra, welcome to our program, an oncology social worker. When someone’s diagnosed with lung cancer, it’s a pretty heavy load for the family, and certainly for the patient. And people like you are there to help, right?

Sandra Manley-Eichler:

Certainly. I think it’s a really great part of my job. I really enjoy the work that I do. And I encourage all patients and families to reach out for the support that they need.

Andrew Schorr:

Well, let’s get started. So, first of all, Matt, how did you find out what might be available? I mean, you were diagnosed, you were coughing up blood, right?

Matt Ellefson:   

Yes.

Andrew Schorr:

Oh my God, what’s that? And then how did you go from the terror of that to getting grounded again and starting to see who could you network with, what, where do you go? How did you do that?

Matt Ellefson:   

You know, Andrew, the first thing I did was say a prayer. And I believe God answered that prayer. And he was able to call me to the point where I was able to—okay, it’s battle on now. I’m in battle mode. And I did—I researched, and I searched, and I looked. And my wife and my brother-in-law helped. And we were on three laptops. We kind of divided and conquered, and we just tried to learn as much as we could about cancer, about lung cancer, and my specific type of lung cancer, and what I needed to do to treat it effectively—where I needed to go for a second opinion.

Who should I talk to? And the biggest thing, though, that I wanted to do was talk to somebody, a stage IV survivor, that was living a happy and productive life. I wanted to see them, and I wanted to ask them, what did you do? How did you get through it? But I couldn’t find anyone. I couldn’t find anyone. And so, I said, you know what? If they aren’t out there, maybe I’ll be the first one, because I’m not giving up. I’m going through this. And God answered a prayer, and away I went for a second opinion. And I ended up at that cancer center in a clinical trial that proved to save my life.

Andrew Schorr:

Right. And then of course, you’ve been continuing to get informed about did you have certain mutations, what tests did you need. If one medicine pooped out on you, and you’ve had that, was there another medicine approved or in research, a trial, that you could benefit from? So, let’s talk about that for a minute. Katie, you’re at a community cancer center, where most people are treated, community cancer centers.

How do they connect with the information? And let’s face it, lung cancer, aging, there’s been a lot of research. There have been a number of new treatments, immunotherapy, all that. So, what—we talked about communication. What should patients be saying, rather than just feeling so forlorn that they’ve been diagnosed with such a life-threatening condition?

Katie Michelson:     

I think, again, having open communication with your provider. It’s important to listen to what they have to say about your diagnosis and treatment options, but instead of just listening, also ask a lot of questions. Ask what are other treatment options? What are genetic testing that I can do? People are well informed if they ask questions. I feel like that’s the most important part.

Andrew Schorr:

Right. Sandra, you’re in an academic medical center, and so, you have a lot of research trials going on too. So, first of all, people say, oh my god, I’ve been diagnosed. Does anybody else have it?

So, maybe you can talk about how do we make connections for patients, and how do also they make sure that the full range of treatment options are available to them? How do you coach people about that?

Sandra Manley-Eichler: 

So, I often work with patients, and I recommend kind of like what Katie was saying, asking a lot of questions of their physician, and not necessarily asking about the resolution from their physician. So, asking where can I find a resource to connect with other lung cancer survivors? And that connection could be, like what Matt was referring to, something specific related to your own diagnosis. I wanted to know – I want to hear from somebody else who has stage IV disease who’s living their live. Where do I go for that? The same thing with treatments, clinical trials, etc. We are fortunate that we are in an academic medical center where we can get connected with a lot of different groups of people with clinical trials, as well as the physicians.

But I think that it’s more than that. It’s sort of you figuring out what is your next step? Because I think when you’re first diagnosed, I think as we know, it can be really scary. And so, at first, it may be a little too intimidating to go right into it. So, sort of taking time and being patient with yourself, and figuring out, is the next step that you want more information, or is it more support? And only you as the patient could know that.

Andrew Schorr:

Go ahead, do an ad for oncology social workers like you. And when I was first diagnosed with leukemia many years ago, it was a social worker who sat down with me pretty quick at the major cancer center I was at, and we chatted. And I think if you’re consumed by fear—you, or your spouse, or family members that are with you—you can’t—you start talking about resources, and you’re not even there. So, I think dealing with the emotional overlay—how do you get that out of the way first, Sandra? How do you lift that cloud a little bit?

There’s still tremendous uncertainty, but how do you lift that cloud so then when you say, well, you can call this number, and you can apply for this, go here and go there, you can think about it?

Sandra Manley-Eichler: 

I always joke with my patients that I feel like I have a whole stack of papers that I just throw at them. And I say, “Well, here you go.” And obviously, the joke is that that’s not gonna be helpful, right? Like you said, you’re sort of consumed with fear. There’s a lot of paralysis, I think, that comes in. And what I recommend is trying to just take one thing at a time. And that’s easier said than done, of course. Something that’s actually evidence-based for cancer-based stress and anxiety is mindfulness practice. Mindfulness-based stress reduction comes in many forms for many different people, whether it’s meditation, or one-to-one mindfulness practice, or even a lot of electronic resources and apps available for that, local courses.

And so, finding some way that makes it easier for you to focus on one thing at a time. And that can be through soliciting the help of friends and family to do that, or through working with a counselor, or, like I said, just engaging in an actual mindfulness practice. There’s a really good book—you can find it on Amazon—Mindfulness-Based Cancer Recovery. You can get it at your local library as well. And I recommend it for all my patients for exactly that, that anxiety that comes in and that overwhelming feeling.

Andrew Schorr:

Okay. So, first resource besides that book is wherever you were being treated, ask if there’s a social worker you can talk to, and they can help guide you through that. We’re gonna talk about other things social workers can do. Related to the jargon of lung cancer—so, I used this word “mutations” before. Somebody’s diagnosed with lung cancer. They’re terrified, and they have had no training. Nobody goes to school, if you’re not in the medical field, to learn about any of this.

And the doctor starts talking about this mutation, and that test, dadada. How do you, Katie, recommend people cut through the jargon to begin to understand?

Katie Michelson:               

Well, in our practice, we utilize nursing navigators a lot to kind of take the time to go over what each targeted therapy would be for their specific diagnosis. It’s important to break it down into layman’s terms so that you understand what’s going on better. And specifically in our practice, we rely a lot on the nurse navigators and on the social workers to help us with that. Obviously, if patients have more specific questions, we can sit down and talk about that further, and talk about it in more detail. But initially, I think it’s important to just kind of keep things simple at first.

Andrew Schorr:

Right. But ask. Ask.

Katie Michelson:               

Right.

Andrew Schorr:

So, Matt—so, you talked about, of course, your faith. But how did you lift the cloud or the terror of the diagnosis for you and your family, and then have this plan? You said, well, we’re gonna get a second opinion. What does that mean? What are they gonna do? What’s gonna happen to me? Where should I go next? How do we pay for it? How did you march through that with you and your family?

Matt Ellefson:   

You know, you just do the best you can. You said it well, and so did Sandra and Katie. The patient does not know. None of us are studying lung cancer ahead of time in anticipation of receiving this diagnosis someday. So, it’s something that’s new to us. And cancer is very complex. It is not something you can learn in two days. And you feel as a patient that you have to make decisions really quick. You have this disease in your body that’s doing its best to kill you. I mean, it is terrifying.

And so, I think one point that I want to make to patients is it’s okay to just calm down, give yourself a couple of weeks, and really understand all of your options, and not be so terrified to jump into something immediately. And that was really my most difficult, most difficult time, was from the point when I was diagnosed until I began treatments, I was going—it was terrifying. It was just horrible for me. I think my oncologist handled it really well, because at that time, I was really not convinced with this treatment plan. It didn’t fall into line with what I had researched. And I wanted to ask around a little bit. I wanted to check—I wanted to get a third opinion. And he said, “That’s perfectly all right. You do that.” And I said, “How much time do I have?” And he said, “You go ahead and take a couple of weeks, but I wouldn’t take any more than a month, because we want to get started.”

And I thought that was handled really well, because it did allow me then to slow down a little bit. I realized that cancer, it may be aggressive, but it isn’t something that’s gonna change overnight. And that’s the fear that a lot of us patients have. We think that, boy, by the end of the week, it’s gonna be growing so bad, we’re not ever gonna be able to stop it. And that’s just—that’s not true. So, people need to really need to be sure that they understand their diagnosis fully, ask all the questions. And SURVIVEiT provides a great tool called “21 Questions to Ask Your Oncologist.” It’s a free, downloadable tool at surviveit.org. Go through that list in detail with your oncologist, and just be sure you understand what your options are available to you, and that you’re making the right choice.

Andrew Schorr:

Well said. I want to tick off some other resources people—Matt, you and I know, in the lung cancer community, there’s some other groups. There’s the Lung Cancer Alliance. There’s Free to Breathe. There’s the Lung Cancer Foundation of America, the Bonnie J. Addario Lung Cancer Foundation. There are all these groups that you can call or go on their websites, and they can often connect you with other patients, and they can also help you—guide you, for instance, if you’re trying to seek a second opinion, where is maybe a center you might go to where there’s a lung cancer specialist? Maybe even, if you’ve been identified and had the right diagnostic testing, where there might be research into that mutation you have, that type of lung cancer, or is there a specialist in small cell lung cancer, if you have that, right?

Matt Ellefson:   

Right.

Andrew Schorr:

So, you’re gonna—what we’re finding out now is different subtypes of lung cancer. And then I just want to put in a plug for Facebook, because there are a number of lung cancer Facebook groups as well. And I mentioned this more rare mutation earlier, ROS1. So, there is a group of people with this rare ROS1 mutation worldwide. There are groups for small cell lung cancer. And there are certainly many groups for lung cancer and all this, and advocates. So, we kind of triangulate this.

So, Sandra, it sounds like a lot of work, though. I mean, a lot of people might say, “Oh my God, I’ve been diagnosed with this life-threatening condition. I just want people to just take care of me.” But it sounds like today, if you can martial family and friends around you, though, you do have a lot of horsepower to be a knowledgeable consumer. I mean, you want to say, heal me, but on the other hand, you want to make sure that all your needs are taken care of.

Sandra Manley-Eichler: 

I think it’s such a balance that when you have a diagnosis of any cancer, that you sort of struggle between wanting to be as independent as you were before, and how much do you elicit help from friends and family? It can be a struggle. And I think what’s nice is that you have an opportunity to delegate tasks to friends and family who, like you said, are fostering support for you. And I have a lot of patients who will send somebody else to speak with me. They’ll say, I’m too dizzy from chemo. I’m too tired. I’m trying to figure out, maybe, how to manage childcare, or going back to work at some point during treatment. And then they’ll ask maybe a friend, or a sibling, or a parent, or a spouse to reach out to me for those resources instead, and sort of filter through those resources.

So, you have many resources, that you have a lot of people who can help you sort of narrow down what’s the best one for you, including your social worker.

Andrew Schorr:

How do you coach people on asking for help? So, Matt, you have five kids, and you have a pretty large family, and a big community in South Dakota where you live. But Sandra, first I’ll start with you, is how do you give yourself permission to say, this is all I can do. My job is to try to get well, but I need help with communication, with food, with asking questions to the doctor, financial resources, transportation.

Sandra Manley-Eichler: 

Sure. With a lot of my patients, I think that that’s a very common problem, so I want to validate that that’s something that I’m sure a lot of our listeners are struggling with, is at what point do I ask for help? And for what? And does that make me appear weak or like I can’t handle it, right? Never a good way to feel.

And I often say, think of somebody that you care about a great deal, whether it’s a family member, your best friend, a mentor, maybe—and now imagine that that person was just diagnosed with cancer. And think about the lengths to which you would go to help that person. And I guarantee you that there are many people in your life who would feel the same way about you. So, I think putting yourself in the shoes of the caregiver, the other person who wants to be of help and exercise some control over what they can do to help you, is a good an exercise in sort of reminding us that we’re all fallible. We all have positions in which we wish that we could sort of shoulder everything. But we’re all human beings. And if you can sort of connect with the people in your life that you really care about, you’ll see that they care about you too.

Andrew Schorr:

I want to remind our audience, if you have a question or something that you want to share, just send it to lung@patientpower.info. Katie, next question for you is you’re at a treatment center.

And I’m actually going through leukemia treatment these days, so I’m in a room with some people getting infusions and things, not just for leukemia but for lung cancer. And there are family members and friends who come in. So, tell me, how do you feel as a practitioner about the involvement of family and friends, and what’s helpful with the healthcare team, and maybe what isn’t?

Katie Michelson:

I think it’s one of the biggest support systems that you can have. And we have almost all of our patients come in with either a friend or a family member to all of their follow-ups. They’re there throughout their infusion. And being a prior infusion nurse in the chemo setting, I have seen the relationships that these patients have with their families. I see the relationships that they develop with other cancer patients that are in the next room, or down under the next curtain, or behind the next curtain. And so, those relationships are really important.

And I guess I just have seen that support system a lot, and I know it’s a big part.

Andrew Schorr:

So, making the infusion room a chatty place is okay.

Katie Michelson:               

It is. It’s interesting from a nursing standpoint to see, on a patient’s first infusion day, you’re nervous, as to be expected. And then as the weeks go by, you start to develop relationships with the patients that are there every Wednesday or every other Wednesday. And it’s really cool to see people make their own support groups at their chemo treatment.

Andrew Schorr:

Right. So, Matt, what would you say to people about asking for help or delegating responsibility for family or friends, or a church group, or your synagogue?

Matt Ellefson:   

I think it’s very important, and it doesn’t come easy to a lot of us, for the reasons that you guys just discussed. I mean, we all want to control the path of our life to some degree, and especially when you have a life-threatening disease; you really want to control it.

I mean, because you don’t want to make the wrong choices. And so, it’s really hard to relinquish some of that control to somebody else. And I would recommend, start small. I gave up—the first thing I did was I gave up control of my nutrition to my wife. And she was gonna just study nutrition, and what I needed to it, and the cancer-fighting foods, and things I needed to stay away from. And I thought, boy, this is so helpful. I don’t have to study that anymore. Now I can focus on other things. So, I would recommend, start small. Find one little sliver of need that you might have, and ask a friend if they will do that—your friend, or loved one, or caregiver. And I’ll guarantee you, they’re gonna be willing to do it. And just let it go. And then you’ll start to see the benefit of having that help. It’s tremendous. You can’t do this alone.

Andrew Schorr:

No. There are some tools also for communication to extended networks of family and friends. So, whether you’re like me in California, and I have relatives back in New York and friends around the country, fortunately—they say, well, how’s Andrew doing? Well, if you’re in the throes of treatment and you don’t feel well, it’s very difficult for you to take every phone call or respond to every email. So, think of having somebody, a family member or a friend, who’s like your communications—chief of communications. And there are tools. So, for instance, one I can think of off the bat it Caring Bridge, but there’s some others where you can use these off the shelf tools that are available to you—often for free. Many of the medical centers have them as well—to communicate with family and friends how you’re doing, whether you’re an outpatient, whether you’re in remission, whether you’re in the hospital.

And I think that’s really helpful. Matt, you’d agree, wouldn’t you?

Matt Ellefson:   

Oh, absolutely. Absolutely. It is important to use those tools. Your friends and loved ones want to know how you’re doing, and they want to hear from you, and they want to help. But they haven’t had—many of them haven’t had cancer themselves either, and they don’t know what to do. And they’re afraid to do the wrong thing or say the wrong thing, so it’s really—it becomes a different situation for everyone involved. So, but give them the opportunity to help. And one thing that we always hear people say, too—and I’m gonna flip the coin a little bit. If you’re a friend that’s trying to help somebody with cancer, one thing that people always say is, “Let me know if I can do anything. I’m here for you. Just let me know.” Well, a patient isn’t gonna let them know, because we just don’t do that, because we want to try everything.

So, it’s better to say, you know what? If you live in the cold part of the country, say, you know what? I’m gonna shovel your driveway. Every time it snows, don’t worry about it. You don’t have to worry about any of that. I got it covered. Or, I’m gonna mow your lawn. And if you’re a caregiver or a supporter listening today, take that on. Understand that the patient isn’t gonna ask. You just offer. You just do it, because they need your help, and it will be greatly appreciated, believe me. It will be.

Andrew Schorr:

So, Sandra, a lot of people are reluctant to communicate or don’t—they don’t want to—we’re facing up to our mortality when you’re diagnosed with a cancer. And then we have different family members—including, I want to bring up, children. So, how do you coach people, and what help or resources are there to help us as a patient communicate honestly and where it’s helpful?

Sandra Manley-Eichler: 

Absolutely. I think that it’s important to acknowledge that children will be at different developmental stages. And I think a lot of people feel that they have to be almost extra truthful and mention a lot of details about their cancer treatment, because if they don’t mention every single detail, they’re somehow not being truthful. And in many cases, children are just too young to comprehend, or perhaps they’re developmentally not at the right stage to understand chemotherapy, radiation and what it means. I think parents need to figure out what kind of outcome do they want to have? What do you want the outcome to be of the conversation with your children? I also wanted to dispel a myth. I have a lot of patients who come in who say, “I want to have the big talk. I want to talk with my children about what’s going on with my treatment.” And I usually like to take a step away from that and say, there’s actually multiple talks. You have a lot of almost mini-conversations with children, usually probably just starting off saying, “Mom is sick. Dad is sick.”

And then appropriating from there what’s most appropriate for their treatment, what’s gonna be happening, how their life is going to change, maybe. Practical things. Sometimes kids just want to know, are you still gonna take me to school? Is it gonna be somebody else? And to just roll with the punches. Check in with them and keep open dialogue.

Andrew Schorr:

Well, that’s very important. I want to go on to another area we’ve been getting some questions about, and it’s sort of the elephant in the room. And that is, with innovation in cancer care, but also with inflation, maybe—cancer care is really expensive. And insurance varies. If you’re with our audience in the U.S., you know how much debate is going on about it. And so, people say, well, gee, how are we gonna deal with a cancer and not go broke? Are there resources to help? So, Katie, let me just start with you for a minute. We’ll come back to Sandra.

Katie, I’m sure that conversation comes up. You mentioned nurse navigators, and maybe at your clinic, you have other navigators. How can we help financial research.

Katie Michelson:               

I’m lucky. At my facility that I work at, we have a navigator that is just focused specifically on getting things covered for insurance, preauthorization, looking at the drug companies themselves for support with medications. We also look towards the social worker a lot for additional support. Even though I’m in a smaller hospital, smaller clinic, we have a lot of resources for our patients, and that’s specifically to help with the financials of everything.

There is also a program that we have, and I can’t speak for every hospital, but any prescription that is made under the provider at our clinic is covered by the hospital.

So, that’s a resource that our patients use a lot. Anything that has to do with their cancer treatment, anxieties, side effects from chemo—that’s all covered for the patients. 

Andrew Schorr:

Wow. Well, I should mention, and this is for audience—depending on where you get care, check. So, for instance, okay. So, first thing is, what insurance do you have and what coverage? I was blessed when I asked the financial person as I was in my second cycle of leukemia treatment. I said, “Oh, I just want to check how much this is gonna cost me.” And because I had Medicare, and I had a Medicare supplement—you see the ads on TV on the U.S. all the time now for the Medicare supplement. For these infused therapies, I have no cost. Wow. Okay. Certainly with the oral therapies, there are co-pays, and a lot of people look for assistance programs. So, let’s talk about that too, Sandra. So, even if you have—maybe your infused therapies are being covered, you may have oral therapies that unfortunately the insurance is different.

But there are some programs to help there too, aren’t there?

Sandra Manley-Eichler: 

Absolutely. I’m so glad you brought that up. And just as an aside, since we’re talking about Medicare, if there’s anybody listening, Medicare open enrollment ends in one week. So, this is the time at which folks with Medicare can actually seek if there’s a different plan that they would like to enroll in if they felt that it hasn’t been covering their cancer care as much as they would like. So, just putting that out there for Medicare recipients.

So, I work with patients quite a bit on oral oncolitics, all the medications related to their side effects. Katie, it sounds like your institution has a really great program. And again, I do encourage—I want to bounce back off of what you said, Andrew—definitely check in with your hospital to see if there’s any assistance available at the hospital itself for assistance for your pharmaceutical needs. One resource I’m going to recommend is www.needymeds.com. That’s N-E-E-D-Y-M-E-D-S.com.

So, that website is almost like a Yellow Pages, if you will, for finding assistance for very specific medication. It can be very helpful. And then certainly, reaching out to the pharmaceutical company that makes the drug in question to see if they have a specific pharmaceutical program for it. But help is definitely out there. 

Andrew Schorr:

Right. So, there are various co-pay assistance programs. I’m gonna tick off a couple I think of. You may think of others. Patient Advocate Foundation, Good Days. And I know there are some others as well. And then, I was on a panel with a drug company where they explained that when there were no other resources, some of them—not all of them—do have some free drug programs too. So, you gotta ask. And if you’re prescribed a certain medicine, go on the website and call. Usually, they have nurses as well associated at the drug company. Call them and say, look, this is my financial. Am I missing something?

Is there a program that I have not thought about? And the other financial thing I wanted to talk about is related to clinical trials. So, Matt, I know you’re aware of this. And you traveled across the country for second opinions and different treatments. And some of my other friends with lung cancer have gone for some distance for clinical trials. But there can be assistance for that too, Matt, as well, right?

Matt Ellefson:   

Yes, there can. And not many patients are aware of that, but it’s becoming more and more prevalent, actually, which is good. It needs to. They are opening up payment for travel costs, which is great. Oftentimes, clinical trials already cover the drug cost. But if you’re able to get the cost of traveling to and from your treatments, that can save you a lot of money. And that—it’s really important.

It’s gonna help drive the enrollment of clinical trials, which, on average in the U.S. is at three percent. It’s very low. And as we can get that enrollment to increase at higher levels, that just allows the drug to be approved that much quicker. So, it’s really important. 

Andrew Schorr:

Great. Great. So, Sandra, so there are sometimes—I know I had a—maybe it was in Northwestern where you are, or another center where the social workers or clinical trial coordinators sometimes had coupons for different airlines. I think Southwest Airlines did, to help for patients who were coming from a distance. Am I right? But you need to ask.

Sandra Manley-Eichler: 

Yes, you do have to ask. You’re absolutely right. There are some airlines that will contract with different hospitals for providing specifically that. So, especially for finding—whether it’s getting a second opinion or traveling specifically for clinical trials.

I’m also gonna recommended the Corporate Angels Network. They provide free flights for patients. So, it’s a system where folks with access to corporate jets, private flights, will open up seats as they become available for survivors of cancer. So, I think, like you said, it’s always about asking. There’s no harm in that, right?

Andrew Schorr:

Oh, one other thing I wanted to mention is a lot’s changing in the U.S., and we’re all watching it carefully about insurance issues, including with Medicare. And so, the Centers for Medicare and Medicaid have a proposed rule change coming up for those of us who take oral medicines through Medicare Part D, where our copay will be based on the discounted price that the insurance company may have negotiated with the drug company, which, believe it or not, right now, they often don’t pay us on. So, we pay a co-pay that’s a percentage of the retail price when whoever was providing the medicine to us got a discount that they didn’t pay us on us.

Kind of bad and crazy. And so, if you keep an eye on our Patient Power website, I’m gonna be blogging about this and give you a link so you can sound off with the Medicare folks as this proposed rule change is considered. Okay. So, we talked about finance as best we could. We talked about family relationships. I want to talk to you a little bit, Katie, a little bit more about speaking up with your doctor. Maybe the nurse is right there with you, and you have a relationship with them, and then those visits you have with the doctor, and sometimes it’s a little intimidating.

Katie Michelson:               

Mm-hmm.

Andrew Schorr:

So, what would you say to people, though—we talked about communication, about not being afraid to ask questions of the doc, who you may see sometimes as a scientist. And maybe there’s a lot of lingo that’s going on. You’re a little intimidated. But kind of your right to ask questions.

Katie Michelson:

Absolutely. I’ve said it. Ask the questions that you have. If they don’t have the answer that you’re looking for, ask it again. I mean, just keep being an advocate for yourself. And when it comes to therapy and side effects and the toxicity that you might be experiencing, it’s important to discuss that with your doctor, too. And don’t be afraid that a treatment plan would change, or that chemo would be stopped, or that treatment would be stopped just based on side effects. Talk to your doctor and talk to your provider. Keep an open dialogue. Ask questions.

Andrew Schorr:

Well, Matt, let’s be a little more specific about it. There were some people—we were talking about how often patients don’t want to speak up. They just want to put their head down and deal with it. But yet, people may be suffering some side effects that they’re sort of—I don’t want to say grin and bearing, but just bearing.

Again, it’s really important to—the resources can’t be brought to bear unless they know that you’re dealing with a lot of pain, or you’re not sleeping, you have extreme nausea when you get home. They don’t know unless you tell them, right?

Matt Ellefson:   

That’s true. You don’t know what you don’t know. And it is difficult for us, because we are afraid that if we say something sometimes, that’s gonna mean that, okay, they’re gonna reduce dosage. And that may mean that it’s not gonna be as effective. Or there are a number of things. Because at this point in the game, we don’t understand the answer all that well. Now, myself, being on my eighth year, I understand those things really well now. And I get into some pretty serious debates with my oncologist. And I’m not afraid to tell them anything.

But when you’re initially diagnosed, that’s not the case. You don’t feel comfortable, and you are afraid that if you bring up certain things, it may change the course of your treatment. And you need to realize that’s not true. You need to have that discussion. If they do want to change the course of your treatment, then you start talking about that, and you start weighing the benefits of that versus dealing with the side effects. And there are so many different medicines, even alternative therapies, available to deal with side effects. So, you have many, many options. So, you need to exhaust those first before you become afraid that you’re gonna need your treatment reduced or changed.

Andrew Schorr:

Earlier, you mentioned about getting a second opinion. A lot of times, people are hesitant to mention that to Doctor Number One, because Doctor Number One will feel insulted.

Matt Ellefson:   

You’re absolutely right. And it’s not even Doctor Number One. It’s Doctor Number Two. I mean, even today, at almost eight years, I need my doctor, and he’s great. And I have more than one doctor. I have a second opinion doctor, and I have even a third opinion doctor that I’m connected with all the time. But my primary oncologist—I need him. And I do not want to upset him. And I do not want him—because I feel that if I say the wrong thing and I upset him in some way, he’s not gonna give me the attention, maybe, that I deserve, and he may say, well, the heck with him. He’s a complainer. He doesn’t believe in me, so I’m gonna focus on other patients. That’s our normal thought process. But I’d love to hear Katie and Sandra, what their comments are on this.

That’s not true. They don’t do that. They understand that patients are going through a difficult time. And they know how to deal with it. 

Andrew Schorr:

So, Sandra, what would you say? So, one resource for people’s treatment is to get a second opinion so there’s a clear picture of what they’re dealing with. What would you say? So, how do they make that happen and feel okay about it?

Sandra Manley-Eichler: 

Well, I think we have to remember that physicians are also scientists. And scientists believe in repetition of testing. And so, if anything, the physician is very confident about his or her approach to your treatment, then they’re gonna want somebody else to verify that—to say, yup, that you’re going to the right place and you’re getting exactly the right treatment that you have. That being said, a lot of physicians, even though we hold them up as authority figures, and they’re really great people and very smart – they also appreciate that, hey, there maybe somebody else who has a better idea than I do.

And so, I think having a very honest conversation, and even so much as just say, “You know, Doc, I have a question, but I’m a little uncomfortable asking it.” And so, maybe that would be sort of a way to start the conversation and then continue from there. Because sometimes, you’ll be surprised. They’ll already have a person for you to go to. They’ll say, “Oh, sure. I know somebody at Sloan-Kettering. I know somebody at Dana Farber. You should go to this person for the second opinion,” right? And so, I think that it’s just kind of checking in with them and seeing where’s your next step?

Andrew Schorr:

Okay. And one more thing about it is, let’s say that my family member uncovers a clinical trial somewhere else. You’re in Chicago. You have a bunch of major medical centers. I may be hesitant, or should I be, to bring it up with my doctor at my institution where I’ve started, because the trial’s not there.

Sandra Manley-Eichler: 

I think a lot of people feel hesitant, and you folks already mentioned this idea of maybe offending the physician or insulting them in some way. I think that it’s one of those things where a clinical trial contributes to everybody. So, enrollment in clinical trials really only helps the physician that you’re seeing, whether it’s at the place that you’re going first to start treatment or all of them. So, I think that there’s a really great community of physicians who really believe in clinical trials, and they want more enrollment, and enrollment for something that’s the best for your cancer. I think one of the best things about lung cancer treatment is how targeted it is. And that’s really coming out in a lot of the research. And the research wouldn’t be here without clinical trials, whether that’s at your home institution, or whether that’s at another hospital. But the hesitancy is definitely there.

Andrew Schorr:

Okay. So, one of the people watching our show said, “Gee, give me some more hard information.” So, I hope you’re writing some stuff down.

So, for instance—and you just touched on it—there are specific cell types of lung cancer. Not just non-small cell or small cell, but different types. You’ve heard of some of them. Maybe you’re dealing with the ALK mutation, the EGFR. They’re identifying others. ROS1, I mentioned. So, in any case, whether you have one of these identified mutations or others that maybe you’ve noticed, that’s where the testing comes in. And Katie, talk about that. So, for instance, there are a number of companies now doing testing, and there are groups like the Lung Cancer Alliance, and Bonnie Addario, and I think some of the others have been involved, to facilitate you getting the testing if otherwise, you’re having insurance issues or things to help get it paid for. But you gotta ask. You gotta speak up. And Katie, I’m sure you’re familiar now with all these subsets of lung cancer now, and how important it is to get an accurate diagnosis of what’s going on with you, right?

Katie Michelson:               

Yes. 

Andrew Schorr:

Yeah. It really is vital. So, again, ask about tests. Is there a test that I should have, and then you can call one of these foundations, like I mentioned, Lung Cancer Alliance. A, how do I get this genomic testing handled for me? And then their company’s foundation, Medicine Garden, there are a number that do the testing that also have programs to facilitate getting it paid for possibly, or sometimes there’s assistance in other ways as well. So, hopefully that’s some concrete information for people about diagnosis.

We talked about travel. We talked about clinical trials. We’ve talked about the family issues as well. Now, going forward with the uncertainty of it, how do you cope, Matt? I mean, you started SURVIVEiT. But for people you know and even yourself, there’s so much uncertainty of how long the treatment that you have will work, or is there a plan? What resources do you use to move forward—to have hope, basically?

Matt Ellefson:   

Well, the biggest thing that I do is I go—I’m a man of very strong faith, and I go back to my faith. And I always try to be grateful. And when I’m in a slump, I take ten minutes to think about five things I’m grateful for, and I write them down. And we can’t be fearful, or angry, or shameful, or full of any pity, and be grateful at the same time. They don’t go together. You just can’t be that way. Gratitude always kills fear. It kills anger. It kills doubt. It kills shame. And gratitude’s your friend. So, always—you learn to change your thoughts. You learn to change your mind. And another thing I do is, instead of trying to think about how I think or feel, I focus on being the difference.

And I feel that’s why my health has been so sustainable for so long, is I’ve learned that—I’ve learned where my blessings have come from. It’s not from thinking, and it’s not from telling people, but from being. Being optimistic, and being humble, and being empathetic, and being compassionate, and being a warrior of love. Being somebody that, I’m gonna take this on, but I’m gonna love a lot of people along the way. And that is really, really important.

Andrew Schorr:

Well, thank you on so much about that and what propels you. And I think it’s good advice for other people. Matt, you had genomic testing. You’ve had it at different times. Some people have written in and said, “Well, what if my doctor is not willing to do that?”

Or sending it off for other analysis? So, what can you tell people about that and how they can really understand what their mutational status is, and getting that analyzed by the appropriate lab?

Matt Ellefson:   

No, especially via late stage cancer, stage III or IV, it is crucial that you get genomic testing. And not just the testing that your cancer center can provide. I mean, don’t only test for the genes that they have the ability to treat. You need a comprehensive panel. And if your doctor’s unwilling to do that, you need another doctor. It’s just that simple. You need to seek a second opinion immediately. Because cancer is very complex. And the reality is, it doesn’t matter what enemy you have. You can’t find any enemy until you know what that enemy is. And it’s the same way with cancer.

Until we can pinpoint what is specifically driving our cancer, we can’t fight it effectively. So, it’s extremely important to have a comprehensive full panel genomic sequencing performed so that you are provided with—first of all, you understand what is driving your cancer. And even if what is driving your cancer today doesn’t have a targetable solution, a medicine that can target that gene to stop the cancer, at least now you know what to watch for. Because there are breakthroughs coming through monthly. I mean, I get emails—I sign up to listings. SURVIVEIT posts them very quickly in our newsroom, into our social media channels. That stuff is happening faster than it ever has in the history of the delivery of cancer care.

The innovative technology today is happening very quickly. So, you can’t ever lose hope. You really can’t lose hope. When I was diagnosed almost eight years ago, they had one treatment—excuse me—available, a targeted therapy available for lung cancer. And now today, there’s five. And it’s because I’ve been able to stay alive during that time period, I’ve been able to allow them to develop another one and another one.

Andrew Schorr:

A bridge to what’s next. A bridge to what’s next.

Matt Ellefson:   

And you can’t—you just can’t lose hope. You need to know what it is that’s driving your cancer so you can follow that.

Andrew Schorr:

Right. So, Matt, you know we have a friend Lisa Goldman out in California, where her initial genomic testing was for one gene. And then she needed to be tested again and again, and they’d already started her on chemo.

But fortunately, they got to the point where they identified the gene like the third or fourth time around that was active for her, and there was a treatment. And she’s still doing quite well on it, and hopefully, knock on wood, that’ll continue for a long time.

Matt Ellefson:   

Yeah.

Andrew Schorr:

So, you need to get to that point. Now, people ask for hard resources here. So, the Lung Cancer Alliance has a program where you can call, and they have various groups that work with you to assist you in getting genomic testing, okay? And we, Matt and I, are involved in something called the Precision Medicine for Me Consortium, where we’re working now where there may be research groups that come into play that will facilitate paying for the test if you otherwise don’t have insurance. And unfortunately, that’s the mission now, to pay for testing. Okay?

So, listen carefully. I hope you’ve written some of this down. And I wanted to bring up one another thing related to insurance. Some people have fights with their insurance company in their state. Not Medicare now, or maybe this insurance company or that insurance company, operating in your state. There’s a group called the AIMED Alliance—A-I-M-E-D, AIMED Alliance. It’s aimedalliance.com—where they have—it’s propelled by health insurance attorneys who will go to bat with you to make sure that you, even if you have to appeal to the state insurance commissioner, that if there have been denials, that you can appeal that and go through the process to get what is—what you deserve.

So, I know, Sandra, people don’t want to have to have these fights with insurance companies or go to all these resources. But I guess today with this moving target of lung cancer, maybe when you delegate it to family members, that’s unfortunately part of the job.

Sandra Manley-Eichler:

I think that I try not to see it so much as a fight as every patient is a lion tamer in a circus. And whether or not we want to be dealing with the circus, or we want to be that lion tamer, I think that we need to take that control to the patient. I think that one thing that I usually encourage a lot of my patients is to not be afraid. You are the patient. The insurance is intended to be supportive of your care, and if you don’t feel that it’s doing that, then it’s within everyone’s best interest to advocate for that. I’m really glad that you mentioned AIMED Alliance. I’m also going to recommend the organization Triage Cancer. So, Triage is T-R-I-A-G-E. They have a lot of information on their blog about supporting patients, as well as other free webinars talking about how best to navigate their health insurance.

I agree with you, I think it’s really unfortunate that a lot of patients, on top of the stress of treatment, feel like they have to fight with their insurance company. As a social worker, I work with patients, and I often do a lot of conference calls with patients with their insurance company to try to see if we can figure out, where is the disconnect? Where is the coverage not meeting their expectation? And how we can work with that. And I think over time, since it’s gonna continue to come up, because patients—our voice is getting stronger, right? That hopefully, there’ll be a resolution. That’s my hope.

Andrew Schorr:

Right. Amen. Well, Matt is part of that. I try to be part of it too. So, Katie, what advice would you give—as we get close to our ending time here. You’re at a community campus center, but it sounds like they’re in Rapid City. You have a lot of resources – nurse navigators, social workers, people who help look into financial programs. And most people are treated at it sounded more like yours. But some may go to Northwestern, certainly, and the cancer centers like where Sandra is.

But at your level, what would you say people can do so that they take advantage of these? Should they just start by saying to the nurse who’s sticking tubes in their arm, should they say, “Hey, is there somebody I can talk to about finance?” Or, “I’m feeling really down, or my family is,” or, “Gee, I want to get a second opinion.” How do you start the conversation?

Katie Michelson:               

I think it can start with the nurse, definitely. They’re usually the first person that sees you once you’re there for your consultation or for your visit. And then in turn, the nurse can let either the nurse practitioner or the doctor know, and we’ll get you in touch with the social worker or, like I said, the nurse navigators. We can do whatever we can to get you the resources that you need. The first start can be with the person at the front desk. It doesn’t matter who you ask first. It just needs to be asked so that we know that you need the assistance.

Andrew Schorr:

I want to put in a plug for something I wrote about six years ago. When I was diagnosed, I didn’t know anything. And as Matt was saying, we’re often drinking from the fire hose. A lot of data coming at us, and information and jargon we can’t understand or absorb, and we’re terrified. I wrote a book called The Web-Savvy Patient, and here we are on the web. Look it up. The Web-Savvy Patient. And I’ll say right off the bat, I need to revise it. But the process you can go through and some of the resources that were available, even when I wrote the book, and they’ve just multiplied since then, were the process—asking questions, going into the lit. Is there a social worker? Is there a nurse navigator? Is there a financial counselor? Is there air travel assistance? Is there a clinical trial? How do I identify who I should get for a second opinion? And all of that is available to you.

Matt, some closing comments from you. What would you say where people say, “God, I don’t know where to turn”? What would you say to them?

Matt Ellefson:   

I would say turn to God. I would say turn to God, yeah. There are so many people that are really gripped by fear and gripped by the failure to really provide the answers or locate the answers that they’re searching for. And you can always pray for wisdom. And you can also—SURVIVEiT is built—we’re an organization of survivors helping patients. We are built primarily and entirely for the focus that we’re talking about today, because we have been there, and we know what it’s like to struggle. So, we provide and we vote on best-in-class resources. So, if you go surviveIt.org and resource library, it is full of best-in-class resources to help you.

And the other thing that we do is we started a series of videos called Fearless Fridays. And on Fearless Friday, we have a video, and we talk about topics like we talked about today. We pick a different topic every week. But one thing I would also recommend people to do is to reach out and join our SURVIVEiT prayer wall on Facebook. And if you need any help at all, if you need a prayer that’s sent your way – and it doesn’t matter what religion you are—we are gonna pray for everybody. So, everyone is welcome, and everyone can send a prayer, or you can write prayers to others. One of my biggest go to prayers is, “Jesus, I’ll go where you send me. I’m willing and I’m not afraid. My pains and sufferings—may my pains and sufferings contribute in some way to the peace of others.

“And please help me touch those in need with the same love that you’ve given me.” And by changing your thoughts from yourself to how you’re gonna help others, and by allowing yourself to use what is happening to you, these pains and sufferings, for a positive use to help other people, and that’s how you conquer cancer.

Andrew Schorr:

Well, I agree. I’m Jewish, so I see it similarly, but slightly different. And some of you may be religious or not. But I think the idea of this positive force that you can develop in yourself, and draw from others, and bring out in others to help you. And I think you’d agree that, Katie, the healthcare team is really there to help you and give you that sort of support. I’ve had a lot of hugs from nurses.

Katie Michelson:               

We are. Nurses are the best.

Andrew Schorr:

It’s so true. I have a nurse in the family as well. Any final comment from you, Sandra, where people feel overwhelmed about how they can pull on some of these resources, to have the courage to do it? What would you say?

Sandra Manley-Eichler: 

Well, I think everybody has courage. You’re living every minute with a very aggressive, or maybe not aggressive, but something that feels very heavy for a cancer diagnosis. And that’s for both patients and their caregivers. I think that, kind of piggybacking off of what Matt said, that wherever you can find meaning is most important. Some people find meaning in the little things. That really great cup of coffee they have in the morning, the sound of a child laughing—things like that. It’s sort of the details of the day. Some people find meaning with bigger things, like speaking on a panel like this, like you’re doing, Matt, and sort of reaching out and using their experience to help other patients sort of make sense of their diagnosis.

And sort of going back to the question of “why me,” right? Well, why not? And so, you seek meaning in every day and every minute that you have, and that will carry you through. And that will give you the courage to ask for the things that you need, whether they’re small and practical, or whether they’re big and emotional.

Andrew Schorr:

So, I’m gonna give you a couple of other suggestions before we wrap up, too. So, my daughter Ruthie coordinates a Facebook group that we started in February of 2017, and it’s called the Cancer Connection. So, it’s people with all different cancers—a number of people with lung cancer. It has about—approaching 90,000 followers. So, these are people who’ve reached out, and they want to make a connection. Matt’s group has it. There are other lung cancer-specific Facebook groups. But draw on that.

And then going back to something we were talking about with Katie, strike up a conversation with somebody in the waiting room, in the infusion room, at the cafeteria, in the hospital or the clinic. I do that. Then you put yourself out. And I’ve been doing it now—21 years ago, I was diagnosed with leukemia. I’ve met so many people. Many, I’ve met only virtually, and then, boy, if I’ve ever met them in person, it’s like we know each other, and I’ve heard about their kids, and we’ve heard about their journey. We all have that Purple Heart of having gone through cancer care, and so we can relate to that. Speak up. Don’t keep it all bottled up. Sandra, would you agree with that?

Sandra Manley-Eichler: 

Absolutely. And I think that a lot of people feel voiceless when they get diagnosed, but it’s not the case. Your voice just becomes stronger as a result of your diagnosis.

Andrew Schorr:

Well, I want to thank all of you, and I want to thank you, Sandra, for joining us from the Lurie Cancer Center at Northwestern, Chicago.

And Katie, thank you for joining us from Rapid City. I hope it’s not a harsh winter there.

Katie Michelson:

We really haven’t had a winter yet.

Andrew Schorr:

Well, good. Maybe it won’t be that. And there’s your Uncle Matt down in Florida, in the sun, enjoying his health, but enjoying every day, Matt. Matt, thank you so much for all you do from SURVIVEiT, and thank you for some sage advice today. Thanks for being with us.

Matt Ellefson:   

A pleasure to be here, Andrew. Thank you for everything you do.

Andrew Schorr:

Okay, well, thank you. It is a pleasure. I want to thank everybody. We went a little bit long, but hopefully, if you were taking notes, there are some resources along the way that you had. And remember, it was really—just have—really just celebrate every day, is what I do. And I know that’s what Matt does. And then draw on others to help you.

The resources are there. I want to thank you sponsors for supporting this program—CelGene, Nelson, Novartis, and Genentech. And thank you so much to the Patient Empowerment Network for allowing us to work with you to put on these programs.

And thanks to your group, Matt, SURVIVEiT, and also the Lung Cancer Awareness Month Coalition. And I hope that this month, but every day, we can continue to raise awareness and hope for cures. In Carlsbad, California, I’m Andrew Schorr. Remember, knowledge can be the best medicine of all.