Notable News – July 2018

There is some seriously risky business being reported in July. Meal times, diabetes, and bitter-taste sensitivity are all now being linked to a higher risk of cancer. Not to mention what researchers say the risks of complementary medicines might be.

There was another significant risk factor recently revealed, says dailymail.co.uk. A study of 20 million people conducted by Oxford University found that having diabetes increases your risk of cancer. Women with diabetes were 27 percent more likely to develop cancer and men were 19 percent more likely. The study, which included both type 1 and type 2 diabetes, showed that women with diabetes were more likely to develop leukemia and kidney, oral and stomach cancers. The men had a higher risk for developing liver cancer. Diabetes also puts people at risk for heart attacks, strokes, and dementia. You can read more about the findings and diabetes risks here.

Still another new cancer risk factor for women was reported by sciencedaily.com. It was discovered that women who have a high sensitivity to bitter taste also have a high cancer risk. The study tracked the diet, lifestyle, and health of 5,500 British women for 20 years. The women were divided into three categories of bitter sensitivity: super-tasters, tasters and non-tasters. The super-tasters had a 58 percent greater risk and the tasters had a 40 percent greater risk of developing cancer than the non-tasters. Researchers hypothesized that lower vegetable consumption would be a cause for the significant increase in cancer risk for the tasters and super-tasters, but their theory was not proved by the research. Researchers continue to suspect a relationship between diet and cancer risk and hope to further study the overall diet of the tasters and super-tasters to try to determine the connection. More details about the study can be found here.

Alternative medicine may not put you at risk for cancer, but it may increase your risk of dying from it, reports nbcnews.com. A study done by the Yale Cancer Center found that treatments commonly referred to as complementary medicine, including the use of herbs and homeopathy, aren’t harmful when used with standard, conventional cancer treatments, but if the complementary treatments are used instead of the conventional treatments, patients are twice as likely to die from their cancer. The patients who were most likely to use the alternative treatments were young, affluent women and the researchers noted that doctors should use the information from the study to make sure they are meeting the needs of their patients who may turn down standard treatment in favor of alternative treatments. Researchers also acknowledged that alternative treatments such as yoga, acupuncture, and meditation can help to improve a patients quality of life and if they make the patient feel better they should be encouraged to use complementary medicine in addition to conventional treatments. You can read more here.

Make sure you aren’t at risk of missing out on the latest and most compelling cancer-related information. You can find it all here at powerfulpatients.org.

Patient Cafe® CLL – June 2018

Taking Back Control: How I Became An Empowered Patient

Patient Cafe® CLL – June 2018 from Patient Empowerment Network on Vimeo.

CLL patient and host, Carol Preston, leads a panel of 5 other CLL patients from around the country to discuss treatment options and living well with their disease.


Transcript:

Carol Preston:
Hello everyone, and welcome back to my favorite coffee shop, the Patient Cafe. This is our virtual coffee clatch to share information, not just from me but from many other patients who have been living with CLL, chronic lymphocytic leukemia, and they’re going to help their insights to support and to guide us for treatment options and living life well.

Again, I’m Carol Preston. I’ve been a CLL patient for 12 years, one relapse, in remission now since 2010, but, unexpectedly, I developed a second cancer, and I’m not alone in this because some of our coffee clatchers will share their experiences with second cancers as well, was diagnosed in December, a soft tissue sarcoma.

I have a quick update, very positive. My first set of post‑surgical and post‑radiation scans since I did the interview with Andrew Schorr‑‑by the way, it’s on the CLL website, Blindsided By a Second Cancer‑‑those scans were clean. Having said that I have seven more sets of scans to go over the next year and nine months, but fingers crossed that they will be clean as well.

I also want to share a wonderful piece of news since I did that interview, I became a grandmother for the first time. And I know on this panel I am not alone in joining that very, very happy club, but I get very excited about this little baby boy, so I wanted to share that good news with you. And really it just speaks to the importance of keeping one’s eyes on the prize. Because as I was going through a treatment for this second cancer I kept that little baby and its imminent birth in my head the entire time. So lots of good news on my end as well as from the panel from our coffee clatchers that you are about to meet.

Before I turn it over to them and introduce them I want to be sure that we thank the Patient Empowerment Network for its support. The program is produced by Patient Power. This program is not a substitute for medical help and guidance that you receive from your healthcare providers. This is really general information, that as I said at the beginning we hope and are confident will guide you to more informed treatment centers‑‑decisions, and become more empowered. And, in fact, that is what we are calling today’s coffee clatch, Becoming a More Empowered Patient.

We have a robust panel of people joining us around the table with their virtual coffee cups, Sue, Sherry, Catherine, Neal, and Dave, and I’m going to let each of them quickly introduce themselves, where they’re from, how long they’ve been living with CLL. And then from there we will carry on our conversation.

And, Sue, if we might start with you, then go to Sherry, Catherine, Neal and Dave.

Sue:
Absolutely. Good morning, everyone. My name is Sue Dudek. I live in Palm Desert, California. It’s going to be 118 today. Yeah. And, anyway, I was diagnosed with CLL. It’s been five and a half years. It was in January of 2013, diagnosed in a routine blood test. It became very aggressive. I went into treatment the following June, and I am now in remission, which is wonderful. Feeling great, and continue to do well, other than the fatigue.

Don’t know what else you want to know at this particular point. I would have to say that I was pleased to have found Dr. Kipps at UC San Diego, who is my physician, and I am 17p deleted, so that meant that I had to have some rather unique and different treatment approximate plans, but so far, so good.

Carol Preston:
And, Sue, I’m also 17p deleted, and to echo you, so far, so good. All right.

Well, let’s talk to Sherry. Good morning.

Sherry:
Good morning. I’m Sherry Gardener. I live in Fort Collins, Colorado. And I have known that I had CLL since 1999. I’ve probably actually had it since 1996. I’m fortunate to have one of the lower risk varieties. I have a 13q deletion, but I’ve had treatments off and on over the last how many years, 18 years or so. I’ve been in remission now for a little over two years. My last treatment was with idelalisib, and Rituxan.

I’m very fortunate that my hematologist is Dr. Clive Zent at the University of Rochester in New York, so I travel there three, four, sometimes more times a year because he’s a star and I figure we only have not that many chances to get it right.

Carol Preston:
Well said. Catherine?

Cathy:
My name is Cathy Shneck, and I live in the small town of Pine Grove, Pennsylvania. I was diagnosed in July of 1997, so next month will be 21 years for me. Probably what’s a little unique about me is I’m a registered nurse, so I went from being the caregiver to the patient, which is an adjustment for me. I have‑‑I’m on my fourth agent currently. I had FCR, and then I was tried on ibrutinib, which I failed because of bleeding issues. And then I did obinutuzumab, which had no effect.

So I’m currently in a Phase 1 clinical trial at Penn in Philadelphia, an oral agent, the next Btk inhibitor, and so far it’s been working. I am not in remission, but I’m controlled.

Carol Preston:
That’s good news and persistent. And hopeful news.

Cathy:
Yes.

Carol Preston:
Wonderful. All right. And then rounding out our clatch this morning, Neal, and then Dave.

Neal:
Good morning. My name is Neal Rosen. I live in San Mateo, California, which is on the peninsula south of San Francisco. And I was diagnosed just about three years ago, I think in about a week or so, so happy anniversary to me. I had a pretty quick onset of the disease, and so I started chemo within about a month of diagnosis, went through five or six rounds of FCR, and at this point am in remission.

Carol Preston:
That’s great news, and we’re going to hear more about your empowerment moments right after we hear from Dave and say hello to him.

Dave:
Hello. I’m Dave Weisler from Metamora, Michigan. I’m been‑‑I’m 11q. I’ve been in two clinical trials. The first one was with lenalidomide out in Buffalo, New York, and the second one was at Ohio State, and it was for three treatments. It had obinutuzumab, Revlimid‑‑excuse me, ibrutinib and then finally venetoclax, and I’m MRD negative.

Carol Preston:
Fantastic news. That’s the news that we’d like to hear. All right. Well, you’ve met our wonderful panel sitting around our virtual coffee table today, so now let’s get the conversation going. First of all, what I’ve picked up from these introductions, a couple of things. Number of you have been on several treatments, and the other thing that I picked up in terms of being empowered patients is that you wasted little or no time getting to major medical centers and not relying necessarily, necessarily on the first oncologist with whom you met.

That was my situation back in 2006. And, you know, I can say I probably wasted a little bit of time because I wasn’t a very knowledgeable or empowered patient, and sometimes we learn by trial and error. So what I’d like to do is to go around, and you can all pick up from each other. And, Dave, we’ll start with you this time about basically an ah‑ha moment to become empowered. You haven’t been suffering‑‑well, when were you first diagnosed? Tell me again.

Dave:
Eleven years ago.

Carol Preston:
Yeah, 11 years ago, so you’ve been on a few regimens. So tell us about how you became more knowledgeable and empowered.

Dave:
Well, if I had listened to my local oncologist I’d died about four years ago, and so back then he said all we have is a cocktail for you, they called it. And so I started looking into it, and I said, no, there’s got to be something better out there. And I found a website called CLL Forum, and I it had a lot of the people that were in the same boat I am looking for the new treatments.

And that’s where I found the one out in Buffalo, New York, and that lasted about three and a half years. And then, still reading, I found the one at Ohio State, which was the three‑drug treatment that I really, like I said, I was‑‑in seven months I was MRD negative, and at 14 months I was still MRD negative in the blood and the bone marrow. And I haven’t been on treatment for a year and a half.

Carol Preston:
That’s such fantastic news, and as you now know Ohio State is one of the premier medical centers for treatment for CLL.

Dave:
Oh, absolutely.

Carol Preston:
So your research got you to the right place in the Midwest. Neal, since becoming an empowered patient, I know you’ve only been living with this, long enough certainly, but for three years.

Neal:
Well, I was fortunate, if that’s the right word, to have a very good friend here who had been diagnosed about a year and a half or so before I was, and although he has not yet undergone treatments, he did a lot of due diligence. And so he was able to turn me on to sources of information including Patient Power.

And, you know, I have to say that before I was diagnosed I probably couldn’t have told you‑‑given you ten words about leukemia. I just didn’t really know much about it other than it was a blood cancer. And I think, you know, I was referred to my oncologist by my primary care physician, who I trust a great deal, and I did get a second opinion at Stanford. My primary care physician is with California Pacific Medical Center in San Francisco.

And, you know, I read as much as I can and keep on top of things as best I can, and I think, you know, you really have to as a patient you have to do that.

Carol Preston:
And, Cathy, did you have a similar experience are or‑‑you’ve had quite a road. You’ve had quite a path over these last 21 years.

Cathy:
Yes, it’s been a long time. Well, my diagnosis was by accident, or I shouldn’t say accident but I went in for a GYN procedure. They found it on my pre‑op blood work. And then I was referred to a local oncologist that I had a really bad experience with, which I won’t go into. I’m actually on my fifth oncologist now.

I was going to Penn State Hershey. In fact, I still go there. That’s my local oncologist, and he got to the point where he didn’t know what to do with me anymore. He was out of options, so he‑‑we have a very collaborative relationship because we were both medical professionals so he talks to me very respectfully and includes me in all my decisions, and he told me to do some research, look for a CLL specialist, which I did. I narrowed it down to two and then took those recommendations back to him and one of the ones that I had chosen was one that he wanted to recommend, so that’s how I ended up at Penn.

Carol Preston:
And Penn, you may know, is doing leading research on this CAR‑T cell therapy, which doesn’t involve meds at all‑‑

Cathy:
Right.

Carol Preston:
‑‑but reigniting our immune systems in certain ways. Still in experimental stages. So, obviously also plugging and plodding ahead to get the right treatment from the right center or facility.

Cathy:
Exactly.

Carol Preston:
And Sherry, how about you?

Sherry:
Well, I used to be an RN as well, Cathy, and I speak the language, and I think that that gave me a head start in becoming what we are calling a powerful patient. You know, you can recognize quality when you’ve been a nurse, and you can also recognize the opposite, and I had a few false starts.

And, finally, some of you will remember Chaya Venkat, who was so helpful to many of us in the early days of CLL with her online forum. She suggested, she met Dr. Zent up at the Mayo Clinic, and she said, you know, I think he’d be a really good fit for you. And so I started seeing Clive at the Mayo, and saw him there for 10 years. And now have been‑‑he moved over to the University of Rochester to be the director of the CLL treatment and research program there, so now I go to Rochester to see him.

Carol Preston:
From Denver. From Denver, right?

Sherry:
I fly from Denver, yeah. I’m spending all our children’s inheritance.

Carol Preston:
That’s all right. My supervisory doc was at MD Anderson. I live in Maryland, half way across the country, so I feel your inheritance pain there.

Sherry:
Our kids will have a few things left like maybe some dishes, I don’t know.

Carol Preston:
They would rather have you than any inheritance. Anyway, keep going. Sorry about that.

Sherry:
I’d rather have them too.

I can’t emphasize enough the importance of education, self-education. What I have found very helpful in learning about CLL are some of the Patient Power forums with the experts, the interviews with the experts. In fact, one of those led me to a physician in Denver who I will see locally if I need to for emergencies if I can’t get out to Rochester. Dr. John Burke, and he’s terrific too. So education is really important.

I think it’s also important to be aware of the sources of our education. There are some folks on some of the online forums who like to play doctor, and I think it’s‑‑it can be fairly easy to tell what’s good information and what you might just pass over.

I’ve also found exercise to be really important. I was diagnosed serendipitously the day before I was scheduled to do a triathlon in 1999, so I was in really good shape. But I had this little pain, you know, in my sternum the day before, and I thought, oh, I don’t really want to have a heart attack during this triathlon. That would be so embarrassing. And so I went to the emergency room, and it was found on a CBC.

The young cardiologist came into the room after some wait, and she looked about 12, and she said, you have CLL, but don’t worry about it. Oh.

Carol Preston:
Freak out, right?

Sherry:
Thanks for sharing. So I was in really good shape then, and I found that continuing exercise has been one of the best treatments both for anxiety and also for keeping this body in pretty good shape.

Carol Preston:
Yeah, I have to second that as far as‑‑and also getting‑‑mentally getting the endorphins flowing, keeping the energy level up. And I have a feeling that that’s not just you and me, Sherry, but some others on the panel as well.

Sue, could you share with us how you got‑‑how you got into this coffee clatch with this morning, this afternoon?

Sue:
Absolutely. When I was first diagnosed, again I mentioned it was just through routine blood work, and my family physician said, you know, you’re either really, really sick with an infection or you have leukemia. And he said, you look too healthy to be having a really bad infection.

So he referred me to a local oncologist, and they started monitoring me. And during this time I was really quite ill, and it was progressing very, very rapidly, the white blood counts, everything. And this was from February until the first of June, and I went to see the oncologist, and he said we need to start treatment right away. We’re going to put you on FCR.

And I for some reason decided, I said, would you please give me a couple of extra slides of my blood work. And he did. He said, yeah, I’d be happy to. What are you going to do with them? And I said I’m going to send them to a friend of mine who is a CLL research‑‑he’s a blood cancer researcher at the Huntsman Institute in Salt Lake City. And I sent them to him.

He immediately wrote back and said, do not start treatment. Get a second opinion. He said you are‑‑I don’t know if you can get in to see Dr. Kipps, but he’s the best one close to you. So I cancelled my appointment to start treatment. I called down to the UC San Diego in La Jolla. I said they want to start treatment, and they said, send us all of your paperwork. I sent a fax, and within 45 minutes after I sent the fax I got a call, and they said, the doctor wants to see you next week.

Carol Preston:
Wow.

Sue:
Yeah. He wants to see you next week. So off I went. It’s about a two hour lovely drive from Palm Desert to La Jolla, which is even prettier. And so I went down there and am seeing Dr. Kipps. He immediately started my treatment with apheresis. Because my spleen was so enlarged, he was very concerned about tumor lysis syndrome. So my first step was to go back down to the hospital and spend the day having the apheresis where take your blood.

Carol Preston:
Yeah, would you explain what that is for us?

Sue:
Well, it’s kind of‑‑they take all your blood out of one arm and put it back in the other, and it’s kind of like a dialysis except they put it into a centrifuge, and that spins out the white blood cells because they’re heavier, I believe heavier than the other blood cells, and they were accumulating in a bag‑‑although they’re not white, they’re pink. I will tell you that right now. And they were accumulating and it took‑‑it was about a six‑hour process, and they‑‑

Carol Preston:
So, Sue, if I may jump in.

Sue:
Yes.

Carol Preston:
So good news is that you did push for that second opinion‑‑

Sue:
Absolutely.

Carol Preston:
‑‑including slides to a researcher in Utah who directed you to again another premier center, UCSD. Dr. Kipps is famous, world famous for his research in to CLL. And that’s what I’m hearing from all of you.

One of the questions that I’d like to ask‑‑and anybody can jump in. I don’t want to feel as if we just keep going around the table, is this pushing through beyond the diagnosis. Because I know for example when I heard the word leukemia, you know, for me that was a death sentence, before I knew anything. It was totally out of the blue for me, totally unexpected, and like everyone else scared to death, frightened. And to actually‑‑went to the oncologist referred‑‑to whom I was referred, took that oncologist’s word that this was what I needed to do. Was not an informed patient, was not empowered by any stretch.

And so I’m wondering how all of you, and for those of us watching and listening, would like to know how do you push through that diagnosis? How do you tamp that initial fear and panic to get to the next step, which is to seek another opinion, which is to just take a breath and say, I can wait another week or two or three. I think all of you have something to contribute along those lines, please, just jump in and let’s hear about that.

Sue:
Well, if I would‑‑I could go. I’m one of those that I immediately got on the internet. I mean, literally from the first time I heard from my doctor I got on the internet. I started researching it. I called my mom, and I said, mom, does anybody in the family have leukemia. She couldn’t recall that, so I figured at that point it was probably not hereditary.

So I just really started digging in. Maybe that’s me. I was a researcher in my background, so I just started reading everything I possibly could about it.

Carol Preston:
Okay. So that’s one way. Of course, a lot of times people feel intimidated. There’s so much information on the internet, thousands and thousands of pages, so all of you seem to have waded through that.

Neal, what about your experience?

Neal:
Well, as I said earlier, I had the good fortunate, again if that’s it right word, of having a good friend who had been diagnosed, and so he was able to share some of his insight. I also had a friend who actually was one of the first patients treated with Gleevec for AML, and he’s very close to Dr. Druker, and so he was a good source of information.

And again, you know, I spent a fair amount of time doing the research on my own as well, so I had several different avenues, if you will, of ways to get more educated.

Carol Preston:
Getting on the internet and doing all of this research has been described sometimes as drinking from a fire hose with many of us feeling we need to absorb information. It’s the equivalent of getting an M.D. in the space of one, two or three weeks.

So, Dave, how did you push past that?

Dave:
Well, first of all, I didn’t‑‑I had trouble with my oncologist’s diagnosis that I had seven years and that was about it. Three trials of FCR I assume, and I just couldn’t, I couldn’t see myself there. And I’m a school teacher, so we’re used to researching. And I first went on and looked at all the different websites. Obviously, Patient Power was one of them I looked at and did some research. There’s a place also called PubMed. I don’t know if you’re familiar with it.

Carol Preston:
Yes.

Dave:
Okay. It’s all the research being done. So I went there and looked on what was going on, what were the trials, what were the results. I’m a statistician, so I could read the research, you know, and the probability. And that got me going. And then, like I already mentioned, that one place has a clinical trial place where I saw other people.

And I go, no, that clinical trials is where it was at. This was not just go find an oncologist with FCR. Like I said, he gave me seven years and I just couldn’t‑‑that was just not the right place for me. So I did a lot of research and found that the closest one, like I said, was in Buffalo, New York, for Revlimid.

Carol Preston:
So let me ask Sue first, and then Sherry. When we pause and we take the time to do the research, that to me is the biggest challenge because so many people just want to get the cancer out as fast as they can. And that was my approach. It was not a good approach, obviously, twelve years ago. If I had taken a little more time I might have had one treatment. Of course hindsight is 20/20.

So how do we take that pause? Where do we get the confidence to take that pause before we start jumping into treatment? Sherry?

Sherry:
Well, that’s a really good question, especially for me, it’s hard to answer because I’m‑‑I’m a pretty impatient person, but I’ve also spent a lot of my life in academia. I’m a clinical psychologist, and, like Dave, I am accustomed to doing research. So I too went to pubmed.gov and put in CLL and found the researchers who were doing the gold star work in CLL, and that’s how I chose the subsequent docs that I went to see.

I think we have to dig kind of deep into ourselves and think, am I going to believe what somebody else told me, I have seven years left to live? How would that doctor know you’re going to have seven years? He doesn’t know that. I think we‑‑it’s all about taking responsibility for ourselves and thinking, we’ll see about seven years. We’ll see about 10 years.

But it gets down to who we are inside and the kind of internal strengths I think that we were born with, what our life experiences have been. But we can‑‑if we’re a little timid ourselves we can listen to other people who have done this work and say, well, Dave didn’t want to hear seven years so look at what he did, and I’m going to be Dave for a while, and I’m going to do what he did.

Carol Preston:
And that’s why this Patient Cafe, this discussion that we’re having is so very important for people to muster up the courage, if you will, to take a breath.

Sherry, you had the advantage of being an RN and a clinical psychologist, but still we play a lot of head games with ourselves and mind games.

So, Sue, what’s your story? How did you gain the confidence to take a step back?

Sue:
Well, I have to go back to the friend at the Huntsman Institute who‑‑he accepted those slides and said, let me see what I can do. He sent some of them to Oregon. He said, I want to do some digging. This is what I do. And he sent me an e‑mail literally within about three days basically saying do not pass go.

Carol Preston:
Okay. So let me‑‑and let me, Cathy, we know you’re there. We want to hear how you were able to take a step back and figure it out. And you’re living in a relatively small town. Doesn’t mean you don’t have access to major cities, but Harrisburg isn’t that close to Penn, and you actually started out locally or more locally, did you not?

Cathy:
Right. I was referred to my local oncologist, and, like I said, I had a really bad experience with him. Number one, the day he told me what my diagnosis was he berated me for being upset. That was my start with him. So it all went downhill from there, and I started looking for another physician almost immediately because of some other should I said unprofessional‑type things that happened with him.

But I‑‑I was working in Pottstown at the time, which is about an hour outside of Philadelphia, and I was a nurse manager of a kidney dialysis unit, so I had my colleagues who were the managers of the cancer center, and I picked their brains. They gave me a lot of‑‑back then there wasn’t as much on the internet as there is now. It wasn’t quite what it is today, so I relied more on written materials.

And everything I read said that CLL was a diagnosis or a disease of older men, and I was 38 and a female. So I was like‑‑and everything I read said from diagnosis to death is like 10 to 12 years. And the physician I spoke to at the hospital that I was working at said, you have to realize that if you’re diagnosed when you’re 75 or 80 and they give you 10 to 12 years, you know, that could be just your normal life expectancy. So he said, you’re 38. He said, you can’t go by what that says.

So I took that and ran with it. You know, I said, okay. I’m only 38, so 10 to 12 years is not acceptable to me, so I got as much‑‑

Carol Preston:
Thank goodness.

Cathy:
I got as much information as I could. You know, I went through the medical library in the hospital and had the librarian there help me do some research, things like that, and found out as much as I could. And like Sherry said, I wanted to fix it, you know. Okay, you have this problem. Who do we do about it? Let’s fix it.

So watch and wait for me was a totally foreign concept. I want to fix this because that’s just what we do. And I knew nothing about leukemia. It wasn’t my field. I was a kidney specialist nurse, so I had a lot of where I just figured, you have leukemia, they give you a bone marrow transplant and away you go. So I had a lot to learn, and I’ve learned a lot over the last 21 years.

Carol Preston:
Well, you sure have. First of all, I want to tell you, you look great.

Cathy:
Thank you.

Carol Preston:
So all of your jagged path to get‑‑

Cathy:
Like Sherry said, exercise is important. I run five miles every morning, so, yeah. I did my first 5K about three years ago, and then right after that I found out I was stage IV and needed to do treatment again, so. I was feeling really great, but my numbers didn’t show that, so.

Carol Preston:
By the way, I was stage IV when I was diagnosed initially, not the 17p until the relapse. And you know, I said to myself, well, sort of thank goodness. Stage IV in CLL is not the same as stage IV in other types of inaudible tumor‑‑

Cathy:
Right.

Carol Preston:
Or solid tumor cancers for example.

But I’m wondering if‑‑we’ve talked a lot about the relationship that you have with your current healthcare teams, but I suspect that you have had discussions with other people who are newbies to all of this, and maybe you’ve had to calm them down. So how have you handled people coming to you and saying what should I do? Where should I go? How do I handle this? Shouldn’t I‑‑to your point, Cathy, can’t I just get this fixed? Get this cancer out of me as quickly as I can.

What’s been your experience with other people who have actually come to you for guidance?

Cathy:
Well, I have a friend that was just recently diagnosed, like I’d say maybe a year or two ago. And he goes to the physician that I went to initially, and I keep telling him he needs to get out of there, like you need to go somewhere else. But he just doesn’t want to go anywhere but local. It’s more important to him to be in close proximity than to get what I consider quality care.

Now, he’s not to the point where he needs treatment yet, but I’ve been trying to work with his wife to try to convince him. I think she just about has him convinced to at least‑‑to go down to Penn and get a second opinion.

Carol Preston:
And before I hear from others, it’s something that we want to emphasize for folks watching this. You can be treated locally. A good oncologist not only will work with but should encourage all of us to seek second opinions from the experts in the field, major medical centers, because these are the men and women who are on the cutting edge. And the treatment options from those major medical centers could be a year or two in advance of what the community oncologist or the local oncologist is prescribing. Some of you have experienced that firsthand.

So, again, we want to emphasize, at the very least, be comfortable working locally but get that second opinion from a topnotch expert in the field, and increasingly they are spread around the country. If you go to the CLL forum on ACOR, for example, A‑C‑O‑R, at the end of every discussion they have a list of CLL specialists. So there are lots of places to find CLL specialists at least to get that second opinion.

And then coordinate having that specialist work with your community oncologist. We don’t want to discourage people from working locally. We need or community oncologists. The good ones will coordinate, work with the experts at the major medical centers.

Who else can tell us about an experience with somebody who came to them in the not‑know?

Sue:
My sister‑in‑law was diagnosed with MPN, myeloproliferative neoplasm. I’ve learned how to say that. And she lives in the Phoenix area, and she did not want to go get a second opinion. She was under‑‑and I think a lot of people believe that you can’t, your insurance won’t pay for a second opinion. And I think that’s one of the other myths that we can dispel is that, yes, you can, I think with just about everyone, get a second opinion.

Carol Preston:
And, by the way, being in the Phoenix area, my goodness, you have a couple of great institutions there.

Sue:
Yes.

Carol Preston:
MD Anderson, naming one of them.

Sue:
Yes, and there’s a Mayo‑‑there’s also a Mayo there.

Carol Preston:
There’s a Mayo, so.

Sue:
Her insurance did not allow her to go to Mayo. But, anyway, I did finally convince her because she was not getting better, and her numbers were getting worse and worse and was not feeling well, and I just said please, please, go. And I called my doctor at UCSD, and I said who would you recommend anywhere in the southwest United States for somebody who has MPN, and he recommended, actually, a doctor there at UCSD.

Carol Preston:
All right. Good.

Sue:
And she is now in a clinical trial.

Carol Preston:
Excellent. Excellent. And hopefully‑‑

Sue:
She’s doing well.

Carol Preston:
Doing well, that’s wonderful.

Carol Preston:
Neal or Dave, I’d like to hear from you as to whether anyone has come to you and you were able to encourage, entice, hammer them with information to get a second opinion, to become more empowered.

Dave:
Yes. I was one of nine people trying to see if the three drugs would work and that there wouldn’t be toxicity on there, and obviously it did well for me. And then there was another second arm of 50 people, 25 that had never been treated and 25 had been relapsed.

And this CLL forum that I belonged to, I was‑‑I blogged everything that I did day by day by day. And I also gave out my phone number in what we call a personal message, and so I was getting a number of phone calls from people about the trial. And I would say out of the 50 people I’d say 25 I probably directly brought into it.

Carol Preston:
That’s fantastic.

Dave:
So, but I‑‑just real quickly. I had two gentlemen that helped me, gave out their phone number, and I would call them with just concerns or just being scared. And this was at the early stages of CLL, and they helped me. So, as I tell other people that I talk to, I say, just pay it forward to other people and help them.

Carol Preston:
What great advice that is. It’s so very important.

And I do want to make a plug for clinical trials. There’s a lot of misinformation, and for those of you in the medical field or medical research you know that it’s‑‑it’s tougher rather than easier to get people to join or sign up for clinical trials. But when it comes to cancer clinical trials it’s not a placebo against the drug that’s being tested. It’s the gold standard of care against the new treatment, so nobody should feel they go into a clinical trial and they’re not getting treatment. You have to qualify of course.

Clinicaltrials.gov, reaching out whether it’s ACOR, Patient Empowerment Network, all of the organizations that people are finding online, lots of ways to get involved with clinical trials. So I did want to make a plug for that.

Neal, how about you? Anything? People coming you, asking for help?

Neal:
Well, a couple things. So, as I had mentioned, I had a friend here who was diagnosed, but he’s been in watch and wait, and so I leapfrogged him, if you will, in terms of having to undergo treatment, so I’ve been able to share some of those experiences with him.

And also for about the past year or so I’ve been volunteering with LLS, and one of the things I do is reach out to people who have contacted the organization to talk with them about services and assistance. And certainly as part of those conversations you get involved in some of the personal experiences that‑‑personal experience piece that comes with that.

Carol Preston:
So much of this can really be a grassroots effort, each of us reaching out to a person or two. Sounds like all of us have had the opportunity to talk with somebody else on this unexpected and truthfully unwanted path of cancer, whether it’s a first cancer, whether it’s a second cancer. And hopefully we’ll all be able to do this.

As we wind down our time together in this wonderful coffee clatch, I’d like to go around and ask each of you to a tip. People tend to remember the first thing they hear and the last thing they hear, so perhaps a tip for somebody else. We can use this term becoming more empowered, but many people struggle to find a voice. They’re concerned about delaying.

So let’s start with, Neal, we just heard from you the last, let’s start with you first. If you had one tip to pass along to other patients what, would you say?

Neal:
I would‑‑and other people have touched on this. I would say don’t let the fatigue get you down and try to stay active as you can. Obviously, listen to your body and don’t push, but don’t let it turn you into an inactive person as well.

Carol Preston:
That’s a great tip. And, Dave, how about you?

Dave:
Just that people with CLL, it’s not the death sentence it used to be. There’s too many great drugs out there coming along, and I consider CLL just like diabetes. It’s something I do, I take. I put it in the back of my mind and go on. It‑‑the more you read the more knowledge is power, you’ll find that. It’s not the death sentence it used to be.

Carol Preston:
And we have to remember the first word is chronic.

Dave:
Yes.

Carol Preston:
And the goal is to live with it and die from something else.

Dave:
Correct.

Carol Preston:
Old age, the infirmities of old age, in our 80s, 90s, our 100s. I have a dear friend of my mother who lived life to the fullest till 108, so that’s my goal. I’m shooting for that.

Sherry, how about you? What’s a tip that you can pass along?

Sherry:
Well, I plan for 107 myself, Carol.

Carol Preston:
Yea, okay. You don’t want to live too long there.

Sherry:
You know, I think about the infrastructure structure of ourselves. If we can strengthen who we are as people then we will do better with CLL. And by that I mean eat well, exercise, hang out with good people in your life. Take bolt cutters to any relationships that aren’t good for you. Pay attention to the spiritual component of your life, however that may manifest itself. And have fun. If we do these kinds of things, then the infrastructure will be strong and we can cope with all the vagaries of CLL better.

Carol Preston:
Well, we’re wishing for you, obviously, many more triathlons. And I love that term bolt cutters to people who are not positive.

I just want to add we can’t expect people to understand exactly what we’re going through, but hopefully the people we do hang out with can say things like, listen, I can’t imagine what you’re going through but I can drive you. I can fix a meal for you. I can take a walk with you. I can go to the gym with you. We can go to a movie together. Boy, those are all the things that have helped me in my life and I suspect all of yours as well.

So let’s round this out with Sue and Cathy with your tips for the day. Sue?

Sue:
Well, I’d have to say two things. One is you must be your own advocate. Absolutely. And probably the other thing is get a second opinion.

Carol Preston:
Absolutely.

Sue:
That’s what I tell everybody.

Carol Preston:
Okay. Cathy, you get the last word here.

Cathy:
It’s like Dave said, knowledge is power so you need to be educated. And the other thing I would say is if it doesn’t sound right, if it doesn’t feel right, don’t be afraid to question it. Nobody has all the answers, and just because they have an M.D. or a D.O. behind their name doesn’t make them all powerful, so don’t be afraid to ask questions and to get the answers that you need.

Carol Preston:
That is a fantastic last tip from our Patient Cafe, nobody has all the answers. And please, please, please according to, definitely what Sue said is at least get a second opinion because a good oncologist locally will work with a major medical center to make sure it’s the right treatment at the right time before you‑‑or no treatment. It may be watch and wait or worry and wait, but best not to get treatment until you absolutely need it.

I love Sherry’s counsel of having fun and take those bolt cutters to people who are not positive in your life and can’t walk along this path with you.

I want to thank, give my thanks to all of you. Dave, Neal, Cathy, Sherry, Sue, what a wonderful coffee clatch we have enjoyed here today. And in particular I would like to again thank the Patient Empowerment Network for sponsoring this and supporting the Patient Cafe. I know we’ll get lots of good feedback and responses from the good counsel of all of you empowered patients. Again, may name is Carol Preston. Please, everyone, be well.

Coping With Scanxiety: Practical Tips from Cancer Patients

“Every three to four months I get a wake-up call that my life has taken an unexpected turn. Believe me, there are daily reminders of how different I am now; but scan time is big time scary time, mentally. It takes living with cancer to yet another level of heighten sense of mortality and anxiety.  So MANY thoughts and what ifs course through my brain.  SO hard to shut it off.”  – Katie Edick, METASTATIC AND MAKARIOS.

It may not be officially part of the medical lexicon yet, but “scanxiety” is no less real for those of us who have experienced a diagnosis of cancer.   Pamela Katz Ressler, RN, MS, HNB-BC, founder of Stress Resources, describes scanxiety as “the anxiety, worry and fear that accompanies the waiting period before and after a medical test.” She says it is a common side effect of modern medicine. “As our medical system has become more technologically adept at measuring indicators of disease so too has our anxiety” she says. “Scanxiety is an unintended consequence of medical testing, yet it is one that is rarely discussed by medical professionals with patients.”

Writing in Time magazine in 2011, lung cancer survivor, Bruce Feiler, characterized scans as “my regular date with my digital destiny.  Scanxiety, he wrote, arises from the feeling of “emotional roulette wheels that spin us around for a few days and spit us out the other side. Land on red, we’re in for another trip to Cancerland; land on black, we have a few more months of freedom.”

One of the most common emotional and psychological responses to the experience of cancer is anxiety.  Cancer is a stressful experience and normal anxiety reactions present at different points along the cancer journey.  Did you know that the word anxiety comes from the Latin word anxius, which means worry of an unknown event? Worry, in turn comes from the Anglo-Saxon word “to strangle” or “to choke” – which may very well convey the feeling we have right before a scan, or whilst waiting for its results.

Anxiety is a natural human response that serves a biological purpose – the body’s physical “fight or flight” (also known as the stress response) reaction to a perceived threat. Symptoms vary for each person.  You may experience a racing or pounding heart, tightness in the chest, shortness of breath, dizziness, headaches, upset tummy, sweating or tense muscles. Alongside these physical manifestations, you may feel irritable, angry or apprehensive and constantly on the alert for signs of danger. All of these signs indicate that sympathetic arousal of our nervous system has been activated, preparing us to stand our ground and fight or take flight and run away from danger.

Scanxiety, points out Katz Ressler, can be intense and may mimic symptoms of Post-traumatic stress disorder (PTSD). PTSD is an extreme anxiety disorder that can occur in the aftermath of a traumatic or life-threatening event. Symptoms of PTSD include re-experiencing the trauma through intrusive distressing recollections of the event, flashbacks, and nightmares. As Susan Zager, founder of the non-profit organization, Advocates for Breast Cancer (A4BC), points out “MRIs are very noisy – and because my recurrence was found through an MRI biopsy, I have many memories of scary results from that test.”

It’s been over ten years since I was diagnosed with breast cancer and while my scans are less frequent these days, the anxiety never fully goes away. As blogger and patient advocate, Stacey Tinianov writes, “This is reality even after almost five years with no evidence of disease. I’m not a worrier or a hypochondriac. I’m just a woman whose body once betrayed her by growing a mass of rouge cells that, if left unchecked, have the potential to bring down the house.”

If you are facing an upcoming scan and feeling anxious about it, you may find the following tips helpful. Based on my own experience and the experience of others in the cancer community, these tips are some of the ways in which we have learned to cope with scanxiety.

1. Identify your body’s stress response

How we experience stress is individual to each of us. Learning to tune into what happens in your body when you perceive a stressful situation is the first step in understanding your individual stress response. Does your jaw clench? Is your breath shallow? Are your muscles tense? When you become more aware of your physical response to stress, it will help regulate the tension when it does occur.

2. Pay attention to your breathing

When we are stressed we tend to breathe more shallowly.  Shallow breathing, which does not allow enough oxygen to enter our bodies, can make us even more anxious.   When you feel stressed, practise taking some slow deep abdominal breaths.  Deep abdominal breathing slows the heart down and lowers blood pressure. The advantage of focussing on the breath is that it is always there with us. We can turn to it anytime we are feeling anxious.

3. Stay focussed on the present

Focussing on the past or future can increase your anxiety. Katz Ressler recommends staying focused on the present moment as a way to quieten anxious thoughts. “Methods that have proved successful for scanxiety focus on tools of resilience, often based on mindfulness strategies,” she says. “Key in these methods is to focus on the present moment and not on the outcome of a test or scan.” Focusing on each and every breath is an excellent way to begin to increase your awareness of the present moment.  If you would like to try some short mindfulness meditations to increase resilience and help decrease anxiety, you will find some on Katz Ressler’s website.

4. Use visualization

By enhancing your relaxation skills, you are can lower the fight or flight response that is often triggered during times of increased anxiety. Visualization involves using mental imagery to achieve a more relaxed state of mind. Similar to daydreaming, visualization is accomplished through the use of your imagination. Karin Sieger who has recently received a diagnosis of cancer for the second time, shares this advice, “I certainly keep my eyes shut when inside the machine; focus on my breathing; remind myself this has a start and finish; and then generally try and go in my mind to a calm meadow and have a snooze. Because for once there is nothing else I can or should do for the next minutes.”

5. Practical coping tips

Karin also points to the claustrophobic feeling of being enclosed in a scanning machine as a contributor to anxiety.  Stage IV breast cancer patient, Julia Barnickle recommends an NLP (Neuro Linguistic Programming) process, called the “Fast Phobia Cure” which worked for her. “I still don’t like enclosed spaces,” she says, “but I certainly don’t panic like I used to.” Blogger Margaret Fleming also recommends asking the attendants for any items that can make you more comfortable, such as ear-plugs or a blanket.

6. Break the worry habit

Worry can be a habit and like all habits can be broken.  As soon as that worry voice starts in your head, examine it before it takes hold. Ask yourself, will worrying about this help me in any way?  Julia writes, “For me, worrying is a choice – as is happiness. In the same way that I choose to be happy, regardless of what happens around me or in my own life, I also choose not to worry about – or fear – what might happen in the future. I tend to believe that things will work out for the best. And besides… what will happen will happen, regardless of whether or not I worry about it – so I don’t see the point of spoiling my enjoyment in the meantime. I prefer to get on with my life.”  Jo Taylor, who is living with secondary breast cancer agrees. “I have taken the view that nothing will change the outcome, therefore there’s no point in worrying,” she says.

7. Create an anxiety worry period

Many patients speak about the most anxious period of time being the time you are waiting for scan results. As stage IV blogger and patient advocate, Susan Rahn, writes, “Waiting for the results of any scan that will tell you if the cancer is active and taking up residence in new parts of your body is just as  anxiety inducing, if not worse, as the time leading up to and the day of the actual scan.”

You won’t be able to break the worry habit entirely and ignoring anxious thoughts and feelings can sometimes make them worse.  It’s still important that you acknowledge your worry but not let it control your life. One tip is to designate one or two 10-minute “worry periods” each day, time to fully focus on your anxiety. The rest of the day is to be designated free of anxiety. When anxious thoughts come into your head during the day, write them down and “postpone” them to your worry period.

8. Take Some Exercise

Exercise is one of the simplest and most effective ways to reduce stress and anxiety –providing a natural outlet for your body when you are exposed to too much adrenaline. Jo Taylor, who runs an Exercise Retreat To Recovery program in the UK, finds that staying physically active is helpful. “I am still very nervous in the time between scan and reporting, “she says, “but throwing myself into work or exercise or anything else I do is helpful.”

Virtually any form of exercise, from aerobics to yoga, can act as a stress reliever. The important thing is to get moving, even if that means just walking around the block. Movement with flow and rhythm can also help calm the body and mind. Katz Ressler recommends gentle yoga and walking meditation as proven ways to decrease the stress response and increase the body’s natural calming mechanism. “Finally, remember”, she says, “while you cannot control the outcome, you can work to control the experience and that starts with building resilience.”

I hope you will find these tips helpful and if you have any other coping tips please feel free to add your advice in the comments below.

Health Insurance and Cancer: Your Mileage (and Coverage) May Vary

Financial toxicity is the phrase used to describe the impact of the cost of treatment on patients. The NIH describes financial toxicity as “problems a patient has related to the cost of treatment.” No matter what kind of health coverage plan you have, if you get a cancer diagnosis you’ll quickly discover all the things you’ll have to pay for, from co-pays on chemotherapy infusion drugs to the intricacies of “co-insurance,” where an insurer will pay a percentage, usually 70-80%, of the cost, with the patient responsible for the remaining percentage.

Financial toxicity isn’t limited to cancer – ask any person with diabetes who relies on insulin to stay alive about that – but the cost of cancer treatments is high, and rising higher. Cancer patients are put in the position of having to decide whether they’ll get the treatment their oncology team prescribes, or if they’ll put it off until they have the money for it. Patient assistance programs at pharmaceutical companies can offer some help, but there is no guarantee that a patient assistance program for a specific cancer drug will help everyone who can’t afford the drug.

An NPR piece covered this last year, framing the story around a man with advanced lung cancer whose oncologist prescribed a new drug, Alecensa, for his treatment. Alecensa’s annual list-price cost is $159,000, with Medicare patients like the man in the NPR piece paying $3,200 per calendar year. The patient in the story was prescribed the drug in late 2016, but decided to forego filling the prescription until January 2017, to avoid having to pay $6,400 within 60 days for the treatment.

This is part of a pattern of cost shifting across the health payment landscape. Premiums for private insurance rose 170% from 1999 to 2011, far higher than the average increase in wages in the same time frame. Prescription co-pays also rose dramatically with the introduction of tiered drug coverage plans that passed more cost to the patient. For example, from 2000 to 2012, the proportion of individuals with a drug plan that had three tiers increased from 27% to 63%.

Exacerbating the immediate financial anxiety of negotiating for a treatment that could mean the difference between life and death, there’s the impact of medical bills on a patient’s long-term financial health. A Consumer Financial Protection Bureau report in 2014 revealed that almost 20% of credit reports had medical debt reported on them. In 2016, the Commonweath Fund noted that, “As of late 2016, 28 percent of U.S. adults ages 19 to 64 who were insured all year were underinsured — or an estimated 41 million people. […] Half (52%) of underinsured adults reported problems with medical bills or debt and more than two of five (45%) reported not getting needed care because of cost.”

I’ll put a face on this issue by introducing you to a friend of mine, Linnea Olson, who has been successfully beating Stage IV lung cancer for over a decade. Linnea has insurance coverage under COBRA, which is costly, but helps keep her alive by covering the costs of treatment that aren’t covered by the clinical trials she’s been part of over the years. She recently got a notice that her insurance had been terminated – the story on that is here, on her blog – which put her in the “high anxiety” zone, to say the least. That post is a very clear example of how financial toxicity impacts someone with cancer. Her situation lit fires across the cancer patient activist community, launching a campaign to get her coverage back. Four days later, she received word that her coverage had been reinstated. She shared that news publicly on her blog, too.

My point here is that this should not be way Americans are expected to deal with a cancer diagnosis – by facing the fight of their life while their financial lives are laid waste. The costs of treatment shouldn’t be the first thing someone has to think of when facing a life-threatening illness. The patient community is in sync on that. The oncology clinical community agrees that treatment costs, and financial toxicity, are in need of clearer discussion. The American Society of Clinical Oncology published a report in 2017 that included a recommendation that discussion of treatment cost and coverage “would […] facilitate rational discussions of efforts to use more cost-efficient regimens, use less expensive alternatives, or perhaps forego extremely expensive and toxic options that have little chance to provide meaningful benefit.”

I recommend that we keep advocating for more transparency in insurance coverage, and in the in-clinic discussion of the costs and benefits of cancer treatments. It also couldn’t hurt to advocate that our elected representatives craft legislation that makes that transparency a requirement, not an option.

Show Me the Evidence

A habit of basing convictions upon evidence, and of giving to them only that degree or certainty which the evidence warrants, would, if it became general, cure most of the ills from which the world suffers. ~ Bertrand Russell 

If you follow science and medicine headlines – which I do – you’ll find yourself wondering which headlines to believe, and which to discount. Do I believe that cancer has been cured after seeing that headline in a newspaper? No, because the headline usually skips mentioning that the “cure” was “in mice,” and only a couple of mice. But what about a headline that says a new screening protocol can catch a cancer that’s usually not discovered until it’s metastatic?

Prescription? Follow the evidence.

That prescription can be a challenge, since wading through the science behind the headlines isn’t a short and easy process. But you’re up to that challenge, since there’s a handy-dandy “How to Read Scientific Papers” post to help you navigate the science.

However, I’m not going to just say “go forth, and read science!” Here are two resources to help you figure out what’s real, and what’s just a shiny object, when it comes to the evidence behind medical treatments.

  • Cochrane Crowd is a new project from the folks at Cochrane, the global collaborative with the mission to systematically review the scientific studies that medical evidence is based on – Crowd puts you on the systematic review team. They have training modules to get you up to speed on understanding how to assess scientific studies:
    • Treatments can harm
    • Anecdotes are unreliable
    • Expert opinion alone is not enough
    • The role of comparison
    • Comparing like with like
    • The role of blinding
    • Size matters
  • Health Evidence is a database created and maintained by McMaster University in Canada, where anyone can search for evidence reviews, which are rated on a color scale. Wrapped around this database are a “how to use this” video tutorial, ongoing webinars, a comprehensive glossary (pack a lunch!), and workshops on using evidence in public health policy and decision-making.

If you’re new to the evidence based medicine discussion, I’d recommend starting with Cochrane Crowd, since that’s aimed at getting the public involved in evaluating the evidence alongside professional scientists. The presentation of information is laid out in slices, with the initial 7 training modules leading you into a couple of interactive training sessions with clinical trial , where you’ll

Health Evidence is a deeper dive, aimed at a professional audience, but presented in a way that anyone who can read at an 8th grade level can understand, and use.

Evidence is what the work of science is – forming a hypothesis, testing that hypothesis, and then proving or disproving it. Making the leap from “one mouse now has no tumors after we did this experiment on it” to “we’ve cured cancer!” is one that gets turned into clickbait headlines almost daily. But that linguistic leap does not represent actual scientific advancement.

Science is the slow, steady testing and retesting that happens in studies and trials across the globe. Once those studies and trials are complete, and reported in journals, the work continues to review those results against studies that look to replicate the results of the initial experiments. Then come the systematic reviews of all those experiments, and the assessment of whether what they’ve presented is evidence … or more questions that need to be answered. One mouse without tumors does not human medical evidence make.

Science is a process, and it’s always under review. The more of us who get involved, the more evidence will be proven, with less airtime given to unproven false promises. Get involved, because your life just might depend on it.

Clinical Trial Mythbusters: Does the Clinical Trial Process Need an Extreme Makeover?

Does the Clinical Trial Process Need an Extreme Makeover?

Clinical Trial Mythbusters: Does the Clinical Trial Process Need an Extreme Makeover? from Patient Empowerment Network on Vimeo.

Downloadable Program Guide

Many cancer patients feel that the clinical trial process is in need of a serious makeover. One of them is Jim Omel. Jim, a retired oncologist living with multiple myeloma, turned patient advocate, makes it his business to understand myeloma from the inside out. He joins this program to share his experience in clinical trials and how he learned about his vulnerabilities as a cancer patient.

Also joining the discussion is, Dr. Michael Thompson, medical director for the Early Phase Cancer Research Program at the Aurora Research Institute and an active clinical researcher developing new treatments, particularly early phase (Phase I and II) molecular biomarker-driven clinical trials.

Join us for a meeting of the minds on debunking myths around clinical trials. How are patients protected within a trial? Will I as a patient be lost in the clinical trial system? Can I select my own arm in a trial? The questions are endless and, left unanswered, contribute to the barriers to trial enrollment.


Transcript:

Andrew Schorr:

Welcome to this Patient Empowerment Network program. I’m Andrew Schorr from Patient Power. I’m joining you from near San Diego, Carlsbad, California, and I’m so excited about this program, Does the Clinical Trial Process Need an Extreme Makeover? Having been in a clinical trial, and I’ll talk about my experience in a little while. I am a big fan, but I know that people have concerns, and I know that the percentage of cancer patients who are in clinical trials among adults is very low. How does that affect drug development and having the chance to get closer to cures for us?

I want to thank the financial sponsors for this program who provided assistance to the Patient Empowerment Network. They are Celgene Corporation, Astellas and Novartis. They have no editorial control, so what happens in the next hour is what we say, the questions you ask, what we hear from our experts who are joining us.

If you have a question, send it in to questions@patientpower.info. Again, if you have a question, send it in to questions@patientpower.info, and our wonderful producer Tamara will take a look at it, forward it to me, and as we can over the next hour we’ll be discussing questions you have already sent in. And we’ll have a very inspiring, I think, and provocative dialogue between our experts.

So let’s meet them. I want to take you to Grand Island, Nebraska, where my dear friend Jim Omel is there. He’s a retired now family practice physician. And, Jim, for years you’ve been a myeloma patient. When were you diagnosed with myeloma, and what’s happened along the way? You’re taking regular treatment now, I think, some treatment for the bone complications. How are you doing, and when were you diagnosed?

Jim Omel:

Andrew, I was diagnosed in 1997. It started off with a plasma cytoma at T10. I broke my back, I underwent a stem cell transplant in 2000 and had six years of remission. It came back in 2006, and I had radiation and lenalidomide (Revlimid), and it went away a while. Came back again in 2010, and I had radiation, bortezomib (Velcade), Revlimid, dex, and it went into remission. And since then, Andrew, I’ve been so fortunate that all I’ve been taking is bone-protective bisphosphonates.

Andrew Schorr:

Oh, good for you. Now, you were in a trial, but you decided not to continue, but yet you’re a believer in trials.

Jim Omel:

Oh, absolutely. Without trials our treatment wouldn’t change. When I had a full evaluation at Arkansas they suggested that I join their trial, and I did, and at the end of that trial was a tandem transplant. And I got to thinking and reading, and I didn’t really want to get that extent of treatment. I had a single transplant, and I dropped out of the trial. And that’s one of the things that I would certainly tell our listeners, that they can stop a trial at any time. They’re not bound to it. Ever since then, Andrew, I’ve had the good fortune of having fairly responsive myeloma, and when I had my treatments they responded to standard therapy. I certainly would have rejoined another trial if necessary, but I was fortunate that it responded the way it did.

Andrew Schorr:

Okay. And before we meet our next guest, I just wanted you to list some of the committees you’re on, because you’re very active locally and nationally on behalf of patients. So what are some of those activities you’re doing?

Jim Omel:

Well, I’ve been doing this since about 2000, so that involves a lot of activity. Peer review with the NCI was one of my main ways to get started.

Andrew Schorr:

National Cancer Institute.

Jim Omel:

Yes, and I progressed on to the Board of Scientific Advisors, which was a really good, important work with the director of the NCI. I’ve been an FDA patient representative for many years and was on the advisory board that brought Kyprolis or carfilzomib to us. I spend a lot of time each month for sure with the Alliance Cooperative Group working with Paul Richardson as we bring you new trials to patients. I’ve been with CINBR, Center for National Bone Marrow Transplant research for several years, several advisory boards. I’m on two pharma accompany advisory boards as they seek patient input.

Andrew Schorr:

Wow. All right. Well, the point of this, what I wanted our viewers to get, is that Jim is—trained as a physician, worked many years as a family physician, became a patient, eventually had to retire. He’s been through a lot of treatment and is very much an advocate for all of us, particularly in this process of trials. So we’re going to talk about the unvarnished truth about trials and see how we can make it better. Okay.

Let’s skip over to Milwaukee, Wisconsin, where we’re joined by Dr. Mike Thomson, who is very involved in research, and Mike has been very involved in all sorts of programs related to education. So, Mike, first of all, welcome to the program, and tell us a little bit about your involvement both locally in research and in education of other physicians nationwide and worldwide.

Dr. Thompson:

Sure. So not as impressive as Jim, but he’s one of my heroes who has really dedicated himself to improving the clinical trials process. I have an MD, PhD. My PhD is in pharmacology, and I was interested in pharmacogenetics and how individuals vary in their response to drugs, especially cancer drugs. I did my fellowship at MD Anderson and worked with a lot of myeloma doctors there and have worked in the community setting seven years in one place and about five years now where I’m located at and Aurora Healthcare in Milwaukee. I have been on the NCI Myeloma Steering Committee. I’m currently on the NCI lymphoma steering committee. I helped organize the ASCO 2016 meeting. I was the Chair of Education. As of June, I’m one of the editors for cancer.net around myeloma, so taking over from Paul Richardson who did that. So I’ll have about three years doing that and probably asking people like Jim for help to provide educational materials for people. And in the world of myeloma, I’ve created the MMSM or Multiple Myeloma Social Media hashtag to have Twitter chats, which I know some people don’t think are the optimal form of communication, but it is a way to get information out from experts and some opportunity for patients to ask questions. So I’ve been highly involved in social media, highly involved in the NCI and NCORP for increasing access to clinical trials in the community. And right now I am in the middle of an NCI designated clinical trial called EAA172 for multiple myeloma, which has gone through ECOG Executive Committee, the NCI Myeloma Steering Committee, and now we’re discussing with the companies and with Ctap how to bring that forward. And I think that’s—one of the things is how much effort it takes to bring some of these trials from concept to activation.

Andrew Schorr:

Okay. Now, we’ve mentioned this more rare cancer, multiple myeloma, not rare if you have it, but Jim has it, Mike specializes in it a lot. But what we’re talking about applies to the clinical trial process about broadly. So we may have people with us living with lung cancer and hoping to live longer and better, prostate cancer, chronic lymphocytic leukemia, like me, are also myelofibrosis. I’m a two-fer, if you will. There may be many different cancers among our audience, and the process applies to all. So we’re going to talk about that. So whatever it is, ask your questions, questions@patientpower.info. I’m just going to share a little personal story for a second, because I’m very passionate about it, and I wanted to mention it. And this is part of our Clinical Trials MythBusters series, and we have previous programs on Patient Power with lung cancer experts, experts in other conditions about the clinical trial process, so look that up on patientpower.info. There will be a replay of today’s program and also a downloadable guide with highlights that you can share, talk about it with your doctor, with other patients, with people you know and for your review. Okay.

So now my own story. I was diagnosed with chronic lymphocytic leukemia, the most common adult leukemia, in 1996—terrified, had no idea what it was. Didn’t know anything about what a trial was, didn’t know what the treatments were. Quite frankly, thought I’d be dead like within a week. I didn’t know. And so you start getting educated, and eventually that led to me connecting with academic medicine specialists and ultimately suggestion at the appropriate time of being in a Phase II clinical trial. I didn’t know what the phases were, we may talk about that along the way, and it was 2,000 miles from my house. So I traveled a number of times to be in that trial, and I had my local oncologist collaborating on that. And the end result was I had a 17-year remission. I had treatment again for chronic lymphocytic leukemia. It wasn’t until last year, 17 years. And I got the combination of medicines 10 years before that combination was approved. So I’m a believer.

The second thing I’d say about trials was I was in a second trial along the way, and I had deep vein thrombosis, blockages in the veins in my legs, for a blood thinner trial. And by being observed in that trial, that led to them discovering a second cancer which was at work related to those clots, myelofibrosis, and I was observed, so I liked the attention. It had nothing to do with what they were testing. It had to do with the observation you get. So, again, I love the attention of being in a trial. It may give you access to tomorrow’s medicine today, but there are things that may be broken. So, Jim, let’s start with that. Jim, what has been some of the frustration points for you the way the process has been today?

Jim Omel:

Well, I think one of the main things, Andrew, is that clinical trials tend to be designed to answer scientific questions. I think what they should do is be patient friendly. I think they should be designed to help patients. If you ask any researcher, what is the purpose of the scientific trial, clinical trial, they will say, to answer a question. If you ask a patient, they’ll think the purpose of the trial is to help patients. The—it may seem like a minor point, but it’s not. Patients need to be the center of them. We need to help patients understand what their contribution is to a trial. For instance, hardly ever does a patient hear how their outcome, what they did during a trial improved the final outcome of a trial. The patient needs to be centered. If we get the trial to a point where some of the questions are pretty obviously answered, rather than continuing to recruit patients just to be statistically valid, I think trials should close sooner. I think they should be more focused on getting patient care without necessarily the scientific question. I’m not a radical. I’m certainly a fan of trials. We wouldn’t be where we’re at without trials, but I think they should just become more patient-centered and patient-friendly.

Andrew Schorr:

Okay. Now, Mike, Dr. Thomson, so we know we can’t have new drugs approved by the FDA unless there are trials, Phase I, Phase II for sure, and often, typically, Phase III and sometimes even monitoring after a drug has been approved. I think you call those Phase IV trials. But from where you sit having been around this a long time what are some of your frustrations? What would you like to see be improved?

Dr. Thompson:

I agree a lot with Jim. I think another word to put on it is pragmatic trials. So I’ve been on a number of advisory committees, NCI investigator-initiated studies and pharma-directed studies. And when you have an advisory group with a bunch of academics they often think about the theories, and they think about what would be interesting to know. And increasingly both the NCI and others are getting not only patients but community physicians who will say I don’t really care about this question here. And we don’t think that it will fly and won’t accrue, and we know a lot of trials don’t complete accrual, so therefore patients are wasted, if you will, because we won’t have the information, we won’t be able to answer questions. So I agree. There are so many things get to involved it’s hard to break them all down, but part of the issue is answering a clinically meaningful question. I think the meaning should be patient-centered. Within those questions you can ask scientific questions that are imbedded in what are sometimes called secondary imports or co-relative studies. But I just last week was talking to some pharmaceutical leaders, and I said, you have to design a trial to answer a question people care about, and that’s patients and physicians. Because sometimes the trials are designed to get FDA approval, and they’re comparator arm if it’s a randomized study, is an arm that we don’t think is the current standard of care, and we have to do them in countries where they don’t have as many therapies and they don’t have as much access, so they’ll get them done. But then when they’re approved in the U.S. we don’t know what to do with the trial, because it’s not a question we’re asking. So that’s important. And I think if more studies are done not to get FDA approval but to go on pathways and to ask, what are the clinical branch points for decision-making, I think that’s when you’ll start getting good trials.

There are a number of other issues around the pragmatics. So there’s this NCI Match study, tons of people screened, very few people on the matched drugs, and they switched over to a strategy more like an ASCO TAPUR, where they waited for people that already had testing and then the people that had already kind of pre-screened couldn’t get evaluated for the study. And many, many more people went on study. The imaging and other things in the middle were not as rigorous as a usual clinical trial. It rolled quickly, and I think the point is you’re looking for big end points. Where you have to sort of go back to the classical, randomized, Phase III large study is when you’re trying to make incremental improvements, so, for instance, breast cancer where the cure rate or progression-free survival rate may be in the 90-something percentile rate, or even CML or other things where we’re doing so well you’d need a lot of patients and probably a standard design. But in many other areas you can do a variety of different techniques—Bayesian analysis, continuous reassessment models.

And one thing Jim mentioned was stopping for futility or if there’s an obvious benefit, and that is done but probably not as often as it should be. And the designs using what are called interim analyses or futility analysis with data safety monitoring boards or DSMBs, probably could be more robust. There could be more of them. I think people are afraid to do them, because they do slow the trial down, they slow accrual, and that has to do with stuff both within the trial as well as extrinsic to it. So there are a number of barriers and issues, but I think Jim’s pinpointed them as well.

Andrew Schorr:

Okay. Well, folks, you can tell that Dr. Thomson is a scientist. We’re going to unpack this and get down to the nitty-gritty. So, okay. So, Jim, so first of all, we mentioned this term “randomization.” So people wonder in cancer am I going to get the good stuff? I know that I’m sick, maybe like in your area, multiple myeloma, there have been lots of new medicines, but in some other areas not, like pancreatic cancer, for example.

So, say, I understand the standard therapy, and you’re testing it maybe against that, but I want to get the good stuff, because I’m really hopeful. I want to be a believer. So could you just describe where we are with randomization, because that’s a concern people have?

Dr. Thompson:

Absolutely, Andrew, and thanks for asking that question. That’s a real red, red hot button item for me. I maintain that if the patient has gone through the effort of studying their cancer, studying the possible treatments, and they’ve learned of a trial that’s opened that they would qualify for, they’re excited, they go talk to the principal investigator, and they say I want to be in this trial. And the PI turns to them and they say, well, we’ll flip a coin. You may get the medicine we’re going to be using, or you may get standard therapy. Just imagine how disappointing that would be. And when it comes to randomization, Andrew, there’s many, there are many trials that absolutely lack equipoise. And I’m afraid that scientists often use equipoise.

Andrew Schorr:

Now, tell us what that means. You’ve got to define that for us.

Jim Omel:

Equipoise basically means equal, equal balance within the arms. In other words, technically, officially the principal investigator doesn’t know which arm is best. And yet look at it from the patient’s standpoint. Let me give you an example. There was a trial in which patients had the choice of three oral drugs in one arm versus a stem cell transplant in another arm. Now, think about that. Think of the insurance ramifications. Think of the fact that it takes almost a year to really totally recover from a stem cell transplant, versus taking three oral drugs. How can anyone say that there’s equipoise in a trial like that? So how can you pattern your life with the flip of the coin or a computer randomizing you into one of those arms?

Andrew Schorr:

Wow. That’s, that’s an important issue. Another one is, Mike, you know, people are—one of the ladies wrote in on Facebook I posted about this program, and she said, well, the trials are not really accessible to me because I live in a rural area, and they’re only in the big cities. You’re in one, Milwaukee. But Jim’s in Grand Island, Nebraska, and some people if you set requirements for the trial, well, you’ve got to come see me, you’ve got to come to the clinic for a variety of tests with some frequency and somebody has to drive four or five hours and take off work and get babysitters and all that, it just makes it impractical. Where are we with more trials being available or having an aspect of it, like testing, closer to home?

Dr. Thompson:

So I work at a community setting. I’m at our kind of flagship hospital but we cover most of the population centers of Wisconsin, so I think we cover about 70 or 80 percent of the population. So that’s a huge issue for our site is that we—when I talk to sponsors including as recently as last week I say if we can’t do it at all our sites I’m not really interested in doing your trial.

There are exceptions of course. We’re doing a surgical trial or a radiation trial that has to be at one site or sometimes a Phase I trial with just a lot of blood monitoring, very intensive, they can only be done at a few sites. But in general I completely agree that we should try to have the drugs available to people in the community they live in, because that’s where their social networks are, right? So that’s where their family is. They can stay at home. They don’t have to just go into a hotel. They don’t have to pay for travel, and I think it’s better for everyone. And for companies, I’ve been trying to tell them that it’s more generalizable to the reality of where cancer patients are. So

85 percent of cancer patients are in the community setting and are treated there, and drugs should be accessible to them there. So, you know, both the using the CCOP mechanism or NCCCP, and now we have the NCI Community and College Research Program or NCORP. The whole idea is to increase that access to community sites. So this has been going on a long time. I think there were budget cuts, and so the U.S. and the way we’ve established our cancer budgets has been to decrease access at least NCI trials and usually need some of those NCI trials to support the research infrastructure to do other studies. So I think part of that, you know, a lot of these things you follow the money. And if there was more money for community research sites, you could hire more research staff to get these things done.

But I think we need to get them done in the community, because we know if you do early phase studies and they look promising in highly selective patients, then when you expand them and put them in the community you go from efficacy to effectiveness, and the effectiveness isn’t there because the patients are different. So there are all these things with real-world data and comparative effectiveness research at ASCO’s cancer link trying to get at some of that not on study to just try to get the data.

But we need to have access to people, and the way to make drugs cheaper, make them develop faster and answer more questions, both scientific and patient-oriented, is to get more people on trial. There’s a big example for immunotherapy drugs where there are so many immunotherapy drugs and trials there are not enough patients to get it done. So we’re going to enrolling in trials which don’t complete, or we’re not going to be able to answer these questions, so it’s going to stall and move it out the process of moving faster. In myeloma, we move very fast, but we need to do this in other areas too.

Andrew Schorr:

Right. So let’s talk about that. So, Jim, you know, the president had a big kick-off, HHS Secretary Azar I think just yesterday as we do this program, was before Congress and part of it was the discussion of can we lower the cost of drugs ultimately? And one aspect of it is can we speed drug development. So instead of all these trials languishing at the cost of millions of dollars, hundreds of millions of dollars, how do we speed it up?

So one is participation, certainly, but can the process be simplified as well, Jim? What work is going on there, so we can try to get these answers and get to the FDA and present the data quicker, and hopefully there’s been lower cost in getting to that point?

Jim Omel:

Well, as we’re learning more and more about each individual patient, personalized medicine and targeted therapy, we certainly should start relying more on biomarkers. Biomarkers can be a way to select patients that would particularly fit a given treatment.

We need to lower costs. We need to make trials slicker and faster. Single-arm trials are those in which a patient just get—all the patients get the therapy. They all get the same treatment. And FDA has actually approved drugs based on single-arm trials, a much faster and efficient way to get an answer.

The problem is that the costs are going to be there. When I think about Mike and all the work that he does in developing his venetoclax (Venclexta) trial that he mentioned, Mike has put in months or years, and it’s all above and beyond his normal time. I mean his day job is to take care of patients, so all of the work that he does to develop a trial is just remarkable in the extra hours it takes and the consistency that Mike gives to doing his work. We need to make the trials more efficient.

We need to use biomarkers. We need to make them shorter. We need biostatisticians to come up with ways to give us an answer without having to approve so many hundreds or thousands of patients to all these potential new treatments.

Andrew Schorr:

So, Mike, let’s talk about that. And, Mike, first of all, I want to thank you for your—well, both of you, but, Mike, certainly in the clinic, thanks for your devotion to this.

But continuing on that, so this was brought up by Jim, biomarkers, and I know in some of the blood cancers now we’re talking about more and more minimal residual disease testing, and we’re doing genomic testing to see what genes have gone awry, what’s our version of lung cancer or a breast cancer or a myelofibrosis or whatever it is.

And then do we qualify for a trial? What’s our specific situation? Do you feel that that sort of precision medicine testing and analysis can help refine this, so we know which trial is right for which person at which time and also some analysis along the way of how is it going?

Dr. Thompson:

Yeah, so at my site I’m the director for precision medicine, and I gave a talk at ASCO on precision medicine and barriers in the community setting, so I’m very passionate about that. And I think that is one of the ways you can try to get things done with smaller numbers of patients and things done faster. And part of this is alignment, right? So there’s different perspectives, a patient perspective, a payer perspective, a pharma sponsor perspective, the physician. There’s all these different perspectives, and I think it’s trying to get them all aligned and trying to get things done faster.

So, you know, there are some areas where we don’t know enough, and we can’t use biomarkers. But there are other areas where we have a biomarker, and there’s feasibility, and we can test that quickly. And if we are looking for a large effect size—here I am in jargon mode—but if you’re looking for a big, big hit, a home run, is to look for an alteration that is very specific and we think is—a drug can target. So-called targeted therapy—it’s a little bit of a misnomer.

So—and lung cancer has been one of the hottest places for this. So there’s ALK inhibitors, ROS1 inhibitors, EGFR inhibitors, and now BRAF inhibitors, HER2 targets. So lung cancer has exploded with precision medicine therapy, and the same with melanoma and BRAF. So, you know, I think even skeptics will say you don’t really need statistics if the prior therapies, nothing worked, and you give something, and 80 percent of people respond.

There are issues with precision medicines, but the main thing is not response rate but durability. And I think that’s going to be the next iteration of the NCI Match study, which is a large precision medicine study, is stop doing just these small groups of people who are showing activity, but then they relapse quickly. And I think it’s going to look at systems analysis, and how do we overcome resistance.

But one way to get at this and another different take on it is inclusion and exclusion criteria. So this has to do with access and individualizing and being patient-centric. Many of the inclusion and exclusion criteria, when somebody says, oh, I have lung cancer, oh, here’s a lung cancer trial, and they say, oh, you can’t go on the trial. And much of that is because there’s language that’s been cut and pasted from a previous trial which is not really pertinent.

So if the new drug is metabolized by the kidney, you don’t necessarily need to look at the liver studies. And we did a small study or I was aware of a small study done by Kaiser where if we improve the inclusion-exclusion criteria, accrual rate can go up 30 percent—so no cost to that.

Andrew Schorr:

Wow.

Dr. Thompson:

And Ed Kim led a publication about six journal articles in JCO about different aspects of inclusion-exclusion criteria including function, HIV status, age, etc.

Andrew Schorr:

Well, yeah. We had Ed Kim on the program just a week ago, as a matter of fact.

So, Jim, inclusion, exclusion, so first of all, we’re in this age where electronic medical records, it would seem that at your fingertips there could be some analysis of your record and some matching or offering of trials that could come out of an analysis of your results, genomic results. Do you have ALK or ROS or whatever, if it’s lung cancer, whatever it may be maybe JAK2 positive in myelofibrosis, what is various status for us?

And also broader inclusion criteria, and Mike was getting at that, saying some was just—excluding was just cut and pasted. And a lot of us patients would feel, well, that’s just unfair. So what’s your comment on all that, about inclusion and exclusion and analysis so we can be matched with trials more easily, can be offered to us?

Jim Omel:

Inclusion and exclusion criteria are really important parts of trials. They’re what get people into trials, they’re what keep people from being in trials. And, unfortunately, Andrew, many times the criteria are very defined, very narrowed, and drug companies especially want to do it this way to get the best effective appearance of their drug. They want to get approval. And yet in the real world, in fact most times, patients who would not even need inclusion criteria are the very patients that are going to be taking these drugs.

And Mike’s right. There’s too much cut and paste. If a trial takes a thousand patients to write a proposal or protocol, too many times researchers will just take the exclusion criteria that might have been from a previous trial and, like Mike said, cut and paste it when perhaps it’s not even necessary to have creatinine values or kidney values measured so precisely on this particular drug compared to the other one.

So those are the criteria that let people in or keep people out of trials, and they absolutely need to be widened. To make a drug more applicable to the general population we need to reflect the general population more in trials.

Andrew Schorr:

Right. Right. It’s sort of a Catch-22. So if somebody is at a drug company and they’re investing hundreds of millions of dollars maybe to develop a drug, and then that trial is languishing or taking longer to get there, somebody ought to go back and say, well, can I loosen up this criteria, get the big answer and do benefit to patients who may be very willing to be into a trial that doesn’t have all of these requirements that are not really necessary? And we get the answer and get it quicker, and help people along the way. I mean, it’s pretty obvious to me, and I hope they’re watching, folks.

So, Mike, here’s a question for you, though, and you work with people in the community setting. So we have patients who have written in and said, you know what, where I go to the cancer clinic they never mentioned trials to me, and Jim alluded to the extra time it may take for physicians and their teams is when there are trials. You have just treating people with current therapies, and then you’ve got research layered on top of that. It’s very time consuming.

But what about just awareness at the community level? What can we do about that so that wherever I go into a clinic they have a clear picture of what I’m dealing with, and if there is important research going on that relates to me I hear about it? Now, maybe they say, you’ve got to go to a university center, you’ve got to go to Milwaukee, wherever you have to go, but there’s that discussion.

Dr. Thompson:

Yeah, so with all of these, you know this has been analyzed in multiple different papers. We were on one looking at a trial log, trying to look at some of these issues, and what seems to be clear is when people are offered trials they tend to go on them at about the same rate, and that has to do—seems to be somewhat independent of socioeconomic status, race, etc., or geographic area.

So one of my colleagues, Dr. Verani, told us about—about this, about rural settings how do you get people on trial. So there are different barriers. So one is the trial, and like Jim said, if you can only do some therapy that you have to come in quite a bit for that limits the geographic area you can accrue to for most people.

There are site issues where if you don’t have enough research staff to be there enough the doctor doesn’t feel supported to spend time on it. There are physician issues where they may not care about trials, or they have too much people scheduled in clinic, they’re an hour behind, and they can’t stop to spend time on it.

Also in the community setting you may be seeing every type of cancer, and you can’t remember everything, versus at many academic settings you may only see one or a cluster of types of cancer. So if you’re seeing lung cancer all day and you have 10 trials open, you probably know those trials very well for lung cancer, because you don’t care about the CLL or myeloma trials, you only care about lung.

And then there are patient factors. So patients that are in rural Wisconsin may have different characteristics, and the reason they’re in rural areas, you know, the motivations is about, you know, going in for things and stuff like that may be different than people who have the capabilities to fly to Boston or Houston or New York, and they can do that. So all of those areas are important.

Now, one potential way to help mitigate some of those things is we have got a clinical decisions support tool, which is an IT product, which our physicians have to enter in what they’re going to do with the patient. So it could be observe, no treatment, hospice or various therapies. And when they put in the cancer and the stage it pops up with the clinical trials, the first thing that pops up. And so the physician doesn’t have to do the trial, but they have to say why they’re not doing it. And so we can track over time. It doesn’t necessarily help that individual patient, but that doctor has been aware of the trial, and we kind of get an idea of why people are not going on studies, and so that’s one way to do it.

Something we just did the last week is we had a different IT product where the NCI-matched precision study opened up five new arms with different targets for different drugs. So we looked back at the number of patients that had those targets identified within our entire system, and then we screened those to see how many people were still alive, and were their organ functions still good enough to go on these trials because of the inclusion-exclusion criteria, and we found several. So we’re now able to contact the physicians and the research staff to go back for these patients that had screened for molecular testing and now they have new options.

So I think there are IT issues that you can do systemically to try to take some of those barriers away, and then each of those points does have barriers which probably have different solutions and different ways of tackling. But one reason, you know, the accrual rate hasn’t gone up a lot is it’s not easy. It’s a complex problem, so there’s not going to be one single thing you do. There’s going to be many different ways to try to improve things, including patient education.

Andrew Schorr:

Yes, well, okay. To let’s flip that over. Jim, you and I are patients. So what do we want to say, and from your perspective?

So back at the clinic and from group has, so Mike is working on IT to identify trials and have it pop up on the screen for the doctor. Okay. Great. But we’re the ones living with the condition. What can we do so that promising research that we may learn about is available to us? We can see whether it matches up with us. Maybe we have to go down the road. Maybe we have to have a discussion with our doctor to even encourage them to have you us be in a trial. How do we make it happen, okay?

Jim Omel:

Well, of course, we all need to educate ourselves about our cancer. When I was in medicine school I had heard about myeloma, but I certainly wasn’t any expert in it. I had two patients in my practice that had myeloma. I knew sort of how to take care of them. But since I developed my myeloma, I have become my own expert. And as I lead my support group, Andrew, I make them experts. I teach this cancer to them so that they can make educated decisions.

Patients are very likely to go on the Internet, watching Patient Power. In my particular cancer, they’re going to go to the IMF and MMRF to look at myeloma trials and see what’s available. And they will take that information to their doctors, many times making their doctor aware of trials that perhaps they aren’t each advocating or aware of.

So, Mike’s right. There are many factors that keep patients from trials, but one of the things that patients really do themselves is educate themselves and perhaps even to the extent of bringing or educating their doctor about what can be available for their treatment.

Andrew Schorr:

Mike, I want to ask you about cost. So you mentioned different inclusion, exclusion, or what’s your liver function or this or that. So there is a problem where maybe certain drugs or certain aspects of a trial are covered, but then your insurance company, you know, that you have or Medicare or whatever, they say, oh, no, we don’t pay for that, but yet it’s part of the trial or it goes along.

So people have a concern about cost. I want to ask you about two aspects of cost related to testing sometimes. And then also are there programs that can assist with the logistical costs for patients as well?

Dr. Thompson:

So when I trained at Mayo Clinic and MD Anderson, and when I got—first went into practice I prided myself in not caring about cost. And then I realized you have to think about these things because you can bank—you know, we bankrupt, about 40 percent of people with cancer get bankrupted. So these are huge issues for people who want to keep their houses, that want to hand something down to their kids, and cost is huge, right? So that can either be throughout the whole course of standard treatment, or it can be trying to meet the cost of going places, trying to find clinical trials.

So the Affordable Care Act and various other national and state legislative initiatives have tried to make insurance companies pay for the standard costs in clinical trials. There are some carve-outs for smaller companies and things like that, and so this is, you know, not perfect, but in general insurance companies should pay for the standard cost of clinical trials. They should pay for standard imaging stuff too, and they try to get out of that. So it’s not a perfect world, but that should be covered. And any research-associated costs should be covered by the company. Even in some NCI trials some people disagree with what should be covered and isn’t, and it’s complicated. But in general, a patient, the research cost should be covered.

Now, that does not include travel, lodging and a lot of incidentals. So there are a variety of foundations, that could be The Leukemia & Lymphoma Society, that could be other organizations which could help with that. Individual hospitals or health systems might have ways of approaching that. And sometimes there are things you can do within the various companies. So there’s a new target called Entrek, and the company Loxo, I’ve heard will fly people who wherever there’s a site and pay for them to go on the study, which I think is amazing. That’s not true for every company and every drug being developed. But that’s one way to do it.

One of the issues that comes up with IRBs if you’re giving people money, are you coercing them? And, you know, if you’re just recovering the cost to travel, I don’t think you are, right? But those are one of the things that come up. But certainly there are lots of disparities. And just like in different countries, they don’t have access to the drugs we have as standard drugs here, and not all of these disparities are going to be fixed because we have—outside of cancer we have lots of disparities in the United States, but cost is a big issue.

And then value, which we’ve been increasingly talking about in the oncology community, which is utility over cost. And that’s more for once we’ve done the trial figuring out even if shows like it works, how do we figure out how to use it based on those characteristics?

Andrew Schorr:

Thanks. And also I wanted to mention that Mike Snyder is sending that question, answering why it cost so much. I hope that answers it.

We have—you know, some people wrote in as we were preparing for this program and they were bitter because they thought they had a spouse, let’s say, that had died in a clinical trial. And that relates to a couple of things. One is transparency. Is the data from a trial and any dangers that show up, is that reported and analyzed in public, Jim? And also what are the risks being in a trial, and what is the monitoring to try to have trials be at safe as possible. So, Jim, maybe you could talk about that from a patient perspective.

I want to make sure I know what I’m getting, I know what the risks are, and if any have come up along the way I want it to be reported, and I want to know that there’s a team looking out for me.

Jim Omel:

You have every right to expect that, Andrew. If you’re in a trial you have the right to get that knowledge if there’s new things that come up that we’ve learned about. And part of every trial as it’s being written, there has to be a data safety monitoring board. These are the experts who will do what you’ve asked be done. They will monitor the trial as it goes along. They will look for any safety issues. If there are patients who are developing liver toxicities, they will find this. They will point this out and perhaps see if the trial needs to continue or if something needs to be revised.

The presence of institutional review boards review whether trials should go forward or not. Patients who are in trials actually get very, very good medical care and medical coverage. In fact, I would maintain, Andrew, that they get better care than just standard care. They have experts that are watching them even more carefully than would be in a general routine care setting because they’re looking for these concerns and problems.

The person who mentioned the bad outcome, we can’t ever say that every trial is going to be perfect. There are going to be concerns. That’s why trials are done. But they’re relatively rare, and we do have boards and review organizations during the trial, not afterwards, but during the trial to be looking out for your benefit, Andrew, so that you’re not hurt by the trial.

Andrew Schorr:

All right. But let’s say this—and, Mike, for you. So, first of all, admittedly a lot of these trial start, and people are sick people, and they’re feeling maybe the trial is their last hope. We had a friend, Lisa Minkove, who died in the CAR-T trial for CLL not long ago. She had been very sick with CLL, so we’d hoped that it would work. It didn’t work for her, whether CLL won. And we know other people whereas the learning is going on about often powerful new medicines they didn’t benefit. Or in one case, there was a drug, venetoclax we know about, there were some deaths early on when the drug was far more powerful than was originally understood. So what do we do? I mean that’s the real world I guess of scientific study, but that’s a concern, you know, Mike, of people saying, oh, my God, I’m worried about being a guinea pig the unknowns on the subject of dangers.

Dr. Thompson:

So there are a couple of things. So whenever people say—it doesn’t come up as much recently about being a guinea pig, I say, well, guinea pigs don’t have choices, so. And so like Jim has said you can drop off a trial if you want to drop off it. But—so I think for adverse events and things that can happen, one reason to randomize people is that you do understand then if you treat someone with one thing and then another and the death rate the same in both, the drug is not causing it. That’s just the disease. And a couple years ago, there was a presentation from the group at Dana-Farber on the precision medicine program, and the issue was they were taking so long to get people evaluated that their performance status or how well they felt was good, and by the time they got through the evaluation many of them had died. Because the disease, you know, when you get to fifth, sixth, seventh-line therapy it can often progress very rapidly.

And so I think that’s one of the issues, that people can feel the drug did it, and it’s hard to know. And we get these—doctors get these things called adverse events reporting forms, and we have to try to come up with is this probably related, possibly related, and we also get these forms that say you have a patient on the study. The study is open in three countries, thousands of people on it. One person died of a heart attack, and you have no idea as the physician, well, is that the same rate as—you know they’re 70 years old. Is that the same rate as this other 70-year-old. So you need the enumerator and the denominator, and that’s what the DSMB or the Data Safety Monitoring Board is supposed to do, which is look at the data and say, is this beyond what we would expect? And they can stop the trial. They can do expanded cohorts. They can do things to try and figure that out. Now, we know from like even car companies lying about their exhaust systems that if the Data Safety Monitoring Board gets false data, well, you can’t fix that. But that’s pretty nefarious. Like that I think is not something that’s commonly happening and would be a very serious thing to happen.

Now, one thing for transparency is that almost all studies I’m aware of get registered on clinicaltrials.gov or maybe some other sites but usually that site, and they’re supposed to report out the outcomes. It’s not also a perfect process, but you should be able to see how long the study has been open, are there any complications related to it and those types of things. So this whole process is not perfect, but I would say in general the people at the companies are trying to develop something they think is going to work. They’re trying to do it safely, both to help develop their drug well as well as to avoid a bunch of regulatory issues, and the people on the Data Safety Monitoring Board are trying to do their best to answer these questions. But the smaller the number of patients which increasingly will take the trials we are doing and almost are aiming for, it’s harder to be definitive about when these things happen and what caused it.

Andrew Schorr:

Right. Right. It’s imperfect, as we said. So, Jim, Mike Thompson mentioned earlier, gave lung cancer as an example and, of course, across immunotherapy, there are so many companies endeavoring to move this research along. So let’s say you had lung cancer or one of these others where this is big, although it’s going on in the hematology area too, so a patient says, oh, my god, there are all these trials, and I might qualify for one, two, three, four. How do I prioritize? What do I bet on? And maybe my own doctor is doing more than one. So what do you say to patients if they become receptive to being in a trial and there’s more than one trial that they qualify for?

Jim Omel:

That’s a very good question, and it’s a nice kind of problem to have, to have choices of trials. I think, Andrew, the best answer is the patient needs to look at what they are looking for. Are they looking for longevity? Are they looking for something that’s going to expend their life? Are they looking for a trial that maybe will greatly improve their quality of life? Perhaps they’re looking for a trial that gives them one pill per week versus two injections a week. So there are certainly effectiveness end points. There are different things that patients find of value.

But to answer your question it really comes down to each patient needs to ask themselves, what is it I’m looking for in a trial? Do I want something that makes my burden lighter? Do I want something that’s going to extend my life? How much am I willing it accept as far as potential problems versus the standard of care that I know what the problems exist with if I don’t go on a trial?

Andrew Schorr:

Right. So that’s a question we got in, is they’re trying to assess that. One was about how do I prioritize? The other is, by being in a trial, Mike, is it going to make me sicker? Like, to do I have to go through the valley of the shadow of death to get, hopefully, to a better place, and how do you discuss that with your doctor when not everything is known?

Dr. Thompson:

Yeah, maybe I’ll kind of step back and say for phases of trials, Phase I, the intent—both ASCO and NCI say the intent of a Phase I trial is therapeutic. But the statistical design is to evaluate safety. A Phase II is to look at initial efficacy or how well it works, and Phase III is to compare versus standard of care the efficacy. So there’s other types of designs, phase 0, Phase IV and other things, but it used to be, I think, you know, I—we would say don’t go on a Phase I unless that’s the last option because you’ve already gone through the safety initial efficacy if it’s a Phase III trial. It costs a lot of money to do Phase III trials so fewer are being done now, and we’re kind of finding that in this era of precision medicine people are going on trials, and there’s no one rule, but I look at it as if it’s a study involving a lot of different groups of patients, a lot of—you know, it’s not individualized to you, I don’t know, but I think it will have less of a benefit probably than if it’s something like a study designed for BRAF melanoma back when that was a study and you have BRAF. Well, it’s targeted for you. It doesn’t mean it will work, but even if it’s an early phase, a Phase I or II trial, it’s really aimed at your disease.

And we’re finding this with venetoclax, with T1114, and there’s other markers, FLT3 in AML, all these things, and sometimes we find that the drug doesn’t work like we think it’s going to work. The ALK and ROS story in lung cancer, it may benefit other people that we didn’t recognize before, and that’s part of–we’re trying to find people besides T1114 that respond to venetoclax in myeloma because it looks like some people will. But I think as we’re getting more targeted therapy it doesn’t mean there’s no toxicity, but it at least has the suggestion that we’re targeted more at your specific cancer. And some of these pills can have as much toxicity as IV chemo s, but our aim is to decrease toxicity and increase efficacy. And I think, like Jim said, you’ve got to look at different trials and hopefully with a physician who has time to sit down and run through several scenarios. And some people will take the most aggressive therapy because that’s what they’re after, and some people will try something that’s easier and closer to home. So everyone’s values are a little bit different, and you have to try to individualize as a patients.

Andrew Schorr:

Right.

Dr. Thompson:

One thing about trial matching is besides clinicaltrials.gov, there’s myeloma and other groups that are doing these matching, so you can put in characteristics of your cancer and you can try to filter out and get a closer approximation, including at clinicaltrials.gov you can click on the states in the surrounding area or how many miles you’re willing to travel.

Andrew Schorr:

Right. I would mention, put in a plug for our advocacy group friends, whether it’s Lung Cancer Alliance, Bonnie Addaria Lung Cancer or the International Myeloma Foundation with The Leukemia & Lymphoma Society, you can be in contact with them directly and talk about your situation, and they will often be very aware of trials and how it’s starting to line up with these sub groups, subtypes of illness. Here’s a question we got it in with Jack. I just want to get in a couple more before we have to go. This relates to what you were talking about the National Cancer Institute’s Match trial, as I understand it, Mike. He said, regarding precision medicine I thought I heard that initial results have been disappointing for the NCI trial which treats patients with a specific mutation with a specific drug for that mutation. How does this impact precision medicine? You want to talk on that? Mike?

Dr. Thompson:

Yeah, so the people who are opponents of precision medicine would say that the SHIVA trial in Europe and the NCI Match trials were failures. I think you need to look at it a little more carefully. And if you do a huge screening and you don’t have many drugs you don’t have many matches and not many people are going to benefit. So there are some arms in match that match the accrued the number they wanted, and the drugs didn’t work well. So those were truly we think negative studies. But I think the things about Match are there is a huge interest in the community, and they had thousands or several hundred people screened when they only had a few arms opened, and those people weren’t matches, and it basically overwhelmed the system. And then they had to rejigger it to open up more arms. So I think we could—you know, pick holes in the design of the initial study, but I think it took everyone by surprise how much interest there was in trying to personalize these molecular therapies. And other iterations such as ASCO TAPUR, there’s company versions of it like Novartis Signature, and I think the new design of Match do allow for better match rates, and we’ll see how after they’ve adjusted how well they can hit their targets.

Andrew Schorr:

Okay. So that’s an example, where we’re going through a makeover there. Before we go, Jim, we have people watching from all over the world, and Mike alluded to sometimes trials done in other countries. Certainly they are. So we have somebody from New Zealand, we have people from other countries now. How do I access trials? Does it have to be in my country? Or what would you say to an international audience as far as finding out what’s available to them?

Jim Omel:

That’s a difficult question because every country has their own standards. Each country has their own boards that review. What is allowed in some countries are not even allowed. Observational trials can have more importance in some countries than others. Again, it’s a tough question. I think perhaps the person who asked it really needs to be again their own advocate and go online, go with their physician, go to their local support groups, go to their national groups, because they’re the ones that can give that local person their answer. There’s no one set answer for every country because there are some many variances.

Andrew Schorr:

Right. I do want to tell one of my favorite stories. I had a friend Jan Rin in Dublin, Ireland. She had a tremendous problem with more advanced chronic lymphocytic leukemia, one of the conditions I have, no trial for her there. She heard about Imbruvica being studied in Leeds, England, different health system, national health system. She was in Ireland, didn’t have it. She got permission from the Irish government to go over to Leeds and be in Dr. Hellmann’s trial there, and I think it saved her life. She would tell you that. So she had to be pushy. There were newspaper articles. She had to do lots of things to make it happen. It’s going to be varied by country but it starts with…

Jim Omel:

…drug like the one you mention, and it’s not available in the country, and there’s so much of that in myeloma. We have many, many drugs in the US that they don’t have in other parts of the world, and it would be so sad to be a patient in those countries, know that a treatment like that is available but not have access to it. So we all need to work to get these drugs available to patients wherever they’re at.

Andrew Schorr:

Right. Amen. I want to just get some final comments from you. We may just go a couple minutes over. So, Mike, the process is improving, I hope, you’re working on it. Can we feel confident that these gaps, if you will, improving it for prevision medicine, more awareness among the doctors wherever we may go, financial assistance, working with the insurance companies, are you working on it so that this process, we can have some improvement and hopefully have higher levels of enrollment and can get drugs approved quicker?

Dr. Thompson:

Yeah, I think we’re all very concerned about it. We should all be aligned in having more patients on trial, moving things faster and getting it done more cheaply. And I think we’re making progress. It’s not as fast as any of us want, but we’re all trying to move the ball forward.

Andrew Schorr:

Okay. So, Mike, it comes—excuse me. Jim, it comes down to us then as patients. We have to push, right? We have to see what’s within ourselves, what are we willing to do, understand our clinical situation and what’s going on for our cancer, and we’ve got to push, right?

Jim Omel:

And one of the things we need to push for are more interesting trials. We need to make pharma companies put up their drug against another pharma company’s drug. I think it’s so troubling when they’re afraid to take big steps. They just take little, incremental steps with their trials. If we can put drug A of one company versus drug A of another company—pharma companies are really reluctant to do those kinds went trials, and yet those are the kind that would be exciting to patients. I could give certain names of myeloma drugs, but we won’t get into that. It just needs—we need to get better, more interesting trials, and that will attract patients.

Andrew Schorr:

Okay. So I want to just put in a plug for something. We started something at Patient Power called the Patient Power Ambassador Program, and you can see it listed on our site, where you can share your voice. So we can all work with Jim, work with Dr. Thompson, and we cannot just be getting what’s right for us, but we can push on this process. So please consider doing that. Because I want to thank you, Jim Omel, for not just getting what’s right for you as a myeloma patient, but working on these government panels and with advocacy groups to try to advance it for all of us. Jim Omel, thank you for doing this.

Jim Omel:

Thank you, Andrew. It’s a pleasure to do this, and I’ll keep doing it.

Andrew Schorr:

Yes. And long life, Jim. Thank you.

Jim Omel:

Thank you.

Andrew Schorr:

And, Dr. Mike Thompson, thank you, Mike, for your leadership too and those extra hours put in, not just for programs like this but all the clinical research speaking to industry and the government to try to improve this process. Thanks for being with us, Dr. Mike Thompson.

Dr. Thompson:

Thanks for having me on, and I think this is the some of the most powerful patient educational material that people can get, this type of program.

Andrew Schorr:

All right. Thank you so much. So, folks, we’re all in this together. So you have your own issues about whether you know about trials, whether you want to be in a trial, that’s right for you or a loved one, whether it’s close to home, not close to home, so—but we have these discussions. So please look ongoing at the clinical trials mythbuster series. The let us know how we did today. You can always write to me, andrew@patientpower. Our producer, Tamara, T-A-M-A-R-A, at patientpower.info. And talk to your own doctor and your own healthcare team about clinical trials and where they line up, what are the obstacles, for you participating. And let’s see if we can improve this process and ultimately have more medicine that can lead to a cure for us be available sooner. Thank you for watching. We’ve done our best today, but this is an ongoing discussion. In Carlsbad, California, I’m Andrew Schorr. Jim joined us from Nebraska, Dr. Mike Thompson joined us from Wisconsin. Worldwide, we’re here for you. Remember, knowledge can be the best medicine of all. Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.


Please remember the opinions expressed on Patient Empowerment Network are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Sleep Deprivation Caused By Cancer

Both the scientific and medical community agree that the average adult requires at least 7 hours or more of sleep each night to maintain general good health and well-being according to a Centers for Disease Control and Prevention report. Sleep deprivation is an issue for people with medical conditions like musculoskeletal cancer, with a lack of sleep exacerbating the medical condition further. Read on to find out more.

Causes of sleep deprivation in cancer patients 

Sleep disorders, such as difficulty falling asleep, maintaining a sleep period, disruptive sleeping patterns, early awakening, and excessive daytime sleepiness, are prevalent in patients with cancer. Research by the National Cancer Institute indicate that up to 50% of Americans experience sleep deprivation during or after cancer treatment.

The causal factors that may lead to sleep disruption for cancer patients can be side effects experienced from the treatment, medication being taken, protracted stay hospital visits and the stress. The physical changes caused by the cancer can create biochemical changes that can impact your usual sleeping pattern. If sleep is disturbed over a prolonged period this can lead to fatigue and depression that compounds the other causes.

How can you help improve your sleep?

Sleep is important for us all but, for cancer patients it can be a critical need in the recovery process. There are several steps that can be taken to help improve your sleep. Assess your sleeping environment to see if it can be improved to make sleep more comfortable. You may need to consider changing your bed or mattress to improve sleep quality; is the bedroom too hot or cold; is noise a factor for example external or a snoring partner.

Discuss your sleep problem with a medical practitioner who can decide if sleep therapy treatment such as light and stimulant therapy or cognitive behavioural therapy that has been shown to help 70-80% of cancer patients with their sleep. Also, try relaxation exercises before bedtime and there are several different sleeping applications available that can help you.

For those with cancer the stress and anxiety caused by the condition and treatment can naturally lead to sleep deprivation. It is important to understand that this is common for cancer patients and there is help available and things that can be done to help with the problem.

Randy Broad: Voice of the Patient

Board Member, Randy Broad, speaks at House Minority Leader Nancy Pelosi (D-CA) Press Conference

Patient Empowerment Network Board Member, Randy Broad, was invited by Minority Leader Pelosi to the Capitol building to give a ‘Voice of the Patient’ presentation on the subject of continued coverage of pre-existing conditions. Above is a clip from Minority Leader Pelosi’s new conference on June 27, 2018. You can see the full conference on C-SPAN here.


Transcript:

Rep. Joe Kennedy III :

For many of us, battling lung cancer would be the ultimate fight for our lives. For Randy, that fight was just beginning. Now, he fights for every single patient who has had to confront what he did. We’re lucky to have Randy with us today.

Randy Broad:

Thank you, Congressman. 10 years ago, this last March, I went to bed that night just like everyone in this room who go to bed tonight. The next morning, I woke up in a coughing fit, and I coughed up blood and I knew something was obviously amiss. Called my doctor. Went in and within seven days I had been diagnosed with Stage 3 Small Cell Lung Cancer.

Being 52, businessman, a father of two teenage kids, and considered extremely low-risk for such, this came as quite a shock. Fortunately at the time, my company provided excellent healthcare for me and my employees.

During treatment, I was deemed inoperable and the post surgeon meeting I learned I had maybe a year, two tops, to live. Well, as you can imagine that had a pretty profound effect on my life. So, the first thing I did was sell my business and focus on my family. Now, I was faced with personal healthcare insurance and was now paying $1,000 a month with $1,000 deductible and a significant co-pay. But in a few years from there, came along The Affordable Care Act and this changed everything with how I was insured for my health care needs moving forward, both insuring access and treatment with financial protections. Needless to say, I slept better that night.

I joined the Washington state Health Care Exchange, called Apple Health. We grow apples. My insurance premiums were cut in half while maintaining the exact level of care and I was able to maintain and keep my existing treatment team, at Seattle Cancer Care Alliance, which I cannot even begin to tell you how huge that is.

With the recent rumblings here in Washington D.C. to abolish The ACA, me, along with 16 million other cancer patients alone are extremely concerned about maintaining our access to quality health care coverage. Especially, when it comes to pre-existing conditions which we will all have. Health care is the number one cause of bankruptcy in The United States. That probably doesn’t come as a surprise to too many people in this room. And it’s going to get worse as those of us who will forever have a pre-existing condition, can be discriminated against it.

With The ACA, we had begun to experience what patient-centered care can be like and truly means. We cannot go backwards. To what it was like before the protections for pre-existing conditions. And I request Congress to protect The ACA so it remains available to other patients like all of us and like yourselves now and in the future.

Thank you very much for having me here.

A Yoga Technique to Increase Relaxation and Reduce Anxiety

Living Well with Lung Cancer – Mind-Body Medicine

During our Living Well with Lung Cancer webinar, certified Yoga Therapist Raquel Jex Forsgren walked us through a short yoga and breathing technique to help you reduce anxiety and increase relaxation. You can refer back to these practices in stressful situations to help control your mind and breath.

You can check out more of Raquel’s videos on her YouTube channel, Yoga With Raquel.


Transcript:

Raquel Forsgren:

So what I’ll ask all of you to do, even those of you that are on‑‑joining us with Andrew‑‑and Dr. Subbiah, you can do it as well‑‑I’d like all of you to feel really comfortable, just to sit in your chair or if you’re watching this in your bed lying on your back, just wherever you are I want you to just simply close your eyes if you feel comfortable doing that.  And immediately feel the surface of whatever it is that’s supporting you, the chair, the bed, see if you can sink into it, even 5 percent more than you were initially.

Wherever your hands are, feel the bottoms of your hands, maybe the bottoms of your feet, your toes, your heels.  Just feel the body itself.  Now notice your breathing and don’t judge it, just notice what it’s doing, if it’s nice and slow and fluid as you inhale and exhale or shorter little breaths or sticky or clunky in any way.  Don’t analyze it.  Don’t go into any thinking other than just noticing.

Begin to expand your muscles in your ribs as you take your next inhale.  Just think about expanding your ribs out just a little bit more, taking two more nice, slow inhales and exhales.  And I want you to bring to mind one thing you’re really grateful for today.  One thing.  The next before we move on, bring to mind a goal, an intention.  It could be how you want to feel for the rest of the day, emotionally or physically.  How do you want to feel or what do you need?  Beautiful.

Softly begin to open your eyes and bring your hands right in front of your heart with your palms placed together.  We’re going to do just a few movements of our arms so that you can see what it’s like to connect movement, your body and mind and breath together, and also thinking about lung cancer just something that helps expand the lungs and just activate all of those muscles themselves that need to be nourished.

So as you inhale just open your arms like an (? cast) or goal post.  And you’ll need to adjust this.  If you have had surgery along the central plate, take it nice and easy, just open, inhaling.  As you exhale bring your arms together, touching your palms together, elbows and forearms.  Inhale, open the arms again.  Exhale, closing the arms together.  Just take two more only moving with your own breath.  And closing.  One more time just like that, beautifully opening and relaxing.  And releasing the palms back down on your hands.

Close your eyes one more time.  I want you to notice if anything has changed within your body, your mind or your emotions, and there’s nothing wrong if nothing’s shifted.  I just want you to notice.  And softly blink open your eyes again because I want to show you and have you go through with me one of the best anxiety reducing breathing techniques that can be done.  It’s published in the literature.

It’s called alternate nostril breathing.  You can do this while you’re waiting at the doctor’s office for results, if you starting to feel panicky or anxious, when you’re inside an MRI machine or a CT scan, when you are just waking up in the middle of the night with racing thoughts and you can’t seem to shut them off.  So you’ll take two fingers, sometimes it’s the outer fingers but sometimes with arthritis in older hands it’s a little tougher, so I like to use two fingers, you’re going to bring them up to your nose, and you’ll be closing off one nostril at a time.  And I want you to breathe normally and naturally, okay.  So this isn’t anything forced.

Close off the right nostril first, and just delicately push it.  You don’t have to push it clear into your nose.  Just delicately push it.  Exhale all the way out the left side of the nostril.  Then inhale through the left nostril, exhale out the right nostril.  Inhale through the right nostril, exhale out the right nostril.  We’re going to do three more of these.  Inhale through the left, exhale out the right.  Inhale through the right and exhale a little longer out the left.  One last time.  Inhale through the left and exhale longer out the right side.

Bring your hands back down to your lap and close your eyes again.  Take a nice normal, natural breath.  And I want you to notice what’s different in your breathing, if anything.  Just notice it.  Notice your heart beating.  Come back to that intention or that goal you set for yourself.  And softly blink open your eyes with a smile.  I’m expecting all of you watching to be smiling even though I can’t see you.  And Namaste.