Moment of PEN

Inspired by The Daily Show’s Moment of Zen, we would like to introduce you to Moment of PEN. A moment of PEN is something which inspires humor, peacefulness, or joy. These moments can be in the form of videos, images, stories, or just a short sentence that you write or share. Some ideas of what to share can be any of the following:

  • Something that inspired or empowered you
  • A funny post or video
  • kind gesture
  • Something that lifted your spirits

At the end of each week we will be sharing our Moments of PEN in our new Empowered Patient Chat Facebook group and we invite you to do the same. You can join our Empowered Patient Chat group here or share your moment online with the hashtag #MomentOfPEN.

Share your Moment of PEN today!

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Myeloma Patient Cafe® June 2018 – Participating in a Clinical Trial

Host and Multiple Myeloma patient, Cheri Rineker, leads a panel of Multiple Myeloma patients who have all participated in a clinical trial. The panel discusses what it’s like to join a clinical trial, how they got into a clinical trial, and what it takes to be in a clinical trial.


Transcript:

Cherie Rineker:

My name is Cherie Rineker, and I will be your host today.  Today we will be discussing what it’s like to join a trial, how we got in one, and what it takes to be part of a trial.  We have a lot to cover, and we have four guests that were kind enough to take time out of their busy days to share their experiences with us.  So having said that, I would like to start by asking you, Brian, where are you from, when were you diagnosed and what were some of the trials you were part of?

Brian Helstein:

I am from Southern California I’m one of the five people you will ever meet who was actually born in Hollywood.  I was formally diagnosed in February 2011.  In retrospect, symptomatic throughout most of 2010, but that’s with 20/20 hindsight.

At the time that I was considering undergoing a stem cell transplant I was offered one clinical trial through City of Hope which formally is identified as BNTCTN0702.  It was a three‑arm stem cell transplant trial where one arm would get two stem cell transplants, one arm would get a single stem cell transplant and go directly to maintenance, and a third arm would get the stem cell transplant, go through consolidation therapy and then go to maintenance.  And I was in that third arm at the time that that was offered to me‑‑I work in higher ed, and at the time that that was offered to me I said, certainly.  If I’m going to be sick somebody besides me needs to learn from this.  So I signed up for that.

And when I was going through the consolidation therapy they asked me if I wanted to participate in another trial that was‑‑that was attempting to monitor my maintenance and so that they wanted me on a specific maintenance regimen, and I signed up for that one.  So I was on maintenance from that from spring of 2012 through September of 2017.

Cherie Rineker:

Excellent.  Thank you, Brian.  What about you Matt?  Where are you from and what year were you diagnosed?  What studies have you participated in?

Matt William:

Hi, Cherie.  I grew up in Santa Cruz, California, but I was diagnosed in 2011 in Anchorage, Alaska, and then eventually moved to here in Kauai.  I live in Kauai now.

And I have been in four different trials.  The first one I don’t remember.  It was pretty minor, just a different combination of drugs that were common drugs.  And then my second one was my cells with radioactive antibody isotope injection and then followed by an allotransplant.  And I had a stem cell transplant before that, so that was my second one within a year.  And then I wasn’t given much time left, and I was sent to City of Hope for a study on an agent to help with deletion 17p, and that was followed‑‑let me look at my notes here.  I dasanutlin and (?) ixazomib with dexamethasone, and that helped bridge the gap.  I wouldn’t have made it to my CAR‑T trial without that.  And then eventually just recently finished up a CAR‑T cell trial in Seattle.

Cherie Rineker:

Excellent.  Thank you.  Eric, can you tell us where you’re from?

Eric Wolf:

Yeah, thank you.  I’m from Southern California also, grew up in Pasadena, California.  Was diagnosed in 2012 with a vertebra collapse.  That’s how my disease presented.  I have been on four different trials.  Post transplant in 2012, I was part of a shingles vaccine trial.  Don’t know if I got the placebo or the vaccine.  It was one of those types of trials.

Since then I was on a drug trial that did not work.  And then most recently I am currently on a trial.  It’s an antibody‑drug conjugate trial through City of Hope, and as part of that I did a gene sequencing trial.  So four different trials, and currently on an antibody‑drug conjugate trial.

Cherie Rineker:

Excellent.  Thank you.  Thank you.  And last but not least, Barb, could you tell us a little about yourself?

Barb Hansen:

Hi.  Thanks, Cherie.  This is a great opportunity, I think.  I am from Morrison, Colorado, which is a small town outside of Denver.  I was diagnose in 2006, December 6.  This was after breaking a rib back in March, so it took quite a while to get my diagnosis.  And I had been in a clinical trial, the CAL GB100104, which was the trial that helped set the protocol for stem cell transplants now.  That happened back in October of 2007.

And my doctor had talked about a stem cell transplant for me, and then later I found out, like two weeks later I found out it was going to be part of this trial and didn’t want to participate.  And when they said it was going to be a 15‑year trial I said, yeah, sign me up.  So I had the stem cell transplant October of (?) 2017, and then was given the maintenance drug the following February, and then took that maintenance drug for five years and have been in remission ever since then.

Cherie Rineker:

Excellent.

Barb Hansen:

Thank you.

Cherie Rineker:

Thank you, Barb and everybody.  Well, many of you know me.  I was diagnosed in November of 2012 after six months of much back pain and severe fatigue and was diagnosed with multiple myeloma while in the ICU.  And they found three tumors on my spine.  One had gone into my spinal cord, and they were surprised I was still standing.  And then I did nine induction therapies which only brought my counts down to 80 percent and my bone marrow.

But they went ahead and did a stem cell transplant followed by another, and then I went through a total of 13 lines of therapy.  And when the 13th wasn’t successful, relapsed again in December of last year, I told my oncologist that‑‑who wants to put me on four chemo drugs instead of the usually three, I said I want to tryout the CAR‑T.

So very, very sick, I started making the trips to Sarah Cannon, which is about a 14‑hour drive from our house.  And was accepted into the trial and received my CAR‑Ts on the 12th of March, and a few weeks later I showed no myeloma at all in my blood and then also none on the PET scan and none in my bone marrow.  So what 13 lines of treatment were not able to do over 65 months, CAR‑T basically gave me my life back within weeks.  And I’ve become a big proponent of trials ever since.

So what’s a myeloma clinical trial like?  The experiences are probably as vast as the amount of patients that are in it.  Matt, allow me to start with you.  What made you decide to join a trial, and how did your experiences compare to the actual expectations that you had?

Matt William:

Gosh, with my most recent trial I was at the end of the road.  It was the last house on the block, so I was eager to get in and did everything I could to do that.  I was turned down all over the place.  I was on the list in several places including China, and I was told that I only had a couple of months to live and that I probably wouldn’t‑‑there was a‑‑I had an allotransplant so I was being turned down because of that.

And then Seattle Cancer Care Alliance came up with a study that I heard about just through word of mouth.  Although I was a patient there I was not aware of it.  Somebody told me on social media about it, and I got my name on the list.  And my doctor told me I wouldn’t make it, that it wasn’t going to open in time for me, and he was kind enough on his own time to do some searching for me and found the City of Hope trial that targeted my 17p deletion problem.

And so I was willing and eager and trying to get in everywhere and was continually disappointed being turned down, and I thought it was going to happen again there for sure.  And I was lucky, there was a doctor, the Dr. Green there was‑‑opened it up a little bit.  There was many reasons for him to exclude me, but somehow I just squeaked in there, and my story is very similar to yours.  Shortly after, in 28 days, I had no sign of myeloma in my marrow or my blood.

There was a little bit left in my PET scan, but I just got back last week from Seattle and there’s zero sign of myeloma now after my 90‑day test.  So I’m just so grateful for clinical trials and to be able to finally get into the CAR‑T trial.

Cherie Rineker:

Yes, Matt.  We’ve gone this journey together, and I’m so, so thrilled to hear about your results from last week.  Brian, you can you tell us about why you decided to join the trial?

Brian Helstein:

Seriously, I really have spent my entire working life‑‑I’m getting ready to retire, and I’ve spent 50 years in higher ed.  I really, really had no clue at the time of diagnosis life expectancy or anything along those lines, and I figured, you know, that I was going to learn how to deal with this, that or the other infirmity the treatment was going to cause, and other people needed to know how to do that and do it better.  They needed to learn from my experience.  It wasn’t‑‑it just wasn’t something I was prepared to take with me.

And I must say I’m somewhat rebellious about things.  I have a dermatologist at this point who does not like me to go running out in the sunlight without a hat, without a long‑sleeved shirt.  If he had his way, I would also have ski mask and tights on.  No exposure to sunlight, and I have been known to go for a long run in my running shorts and shoes.

This was not going into a clinical trial where I was going to be told you’re going to take these drugs on this day, you’re going to show up at such and such a time on that day.  I knew that I was going to have to be disciplined, and I was going to have to follow exactly the protocol of the trial if it was going to be of any benefit to other people.  So I made that compromise.  I’ll go running without a shirt once a month or whatever, and I will be at the doctor’s office at, you know, 10:15 if that’s the time I’ve been summoned for.

I don’t know any other way to put it.  It was a matter of being disciplined so I could share so that others could benefit from this.

Cherie Rineker:

Very good reason.  Very good reason, Brian.  Thank you for sharing.  Eric, why did you decide to join a trial?

Eric Wolf:

Yeah, I think in some respects they are easy, right?  So the one that I did having to do with‑‑what is it, the shingles trial, it was there, it was offered to me.  It didn’t require much of me but calling in and reporting once a month on what‑‑if I experienced anything.  It was really easy, and so in some sense there’s those types of clinical trials that are just sort of tag‑ones to what we’re already doing.  Same thing with the extra marrow that was collected to do my gene sequencing.  That was not really a big deal.

But like yourself and Matt, there are other clinical trials that we seek out on our own part because we need those to manage our disease, and that was the case with the other two trials I’ve been on.  You know, the one I’m on now is because, as much as we don’t like to admit it, our options are limited, and so this is a trial that’s there and available and the timing lines up, and so you do it.

Cherie Rineker:

Excellent.  So anybody else besides Matt and I has had to travel long distances for their trials?  And then Barb, I’d like to ask you the same question as well, so maybe you can answer that.

Barb Hansen:

Well, I certainly didn’t have to travel.  I’m right here in the Denver area.  I think what really helped me make the decision, and my family helped also, is that I really felt confident with this new doctor I was seeing.  I had seen someone for five months, a hematologist‑oncologist who was not a specialist in multiple myeloma, and then after attending a stem cell seminar and this doc answering five questions in like five minutes I just felt very confident with him.  So I started, I transferred my records and just felt very confident with my healthcare team, and it was his recommendation.

Also, I have kind of a science background and my son does cancer research, and I know that the new science isn’t going to happen without clinical trials.  I’m a real advocate for clinical trials and did‑‑I volunteered for Colorado Cancer Research Program, which coordinates all the trials.  So it’s been a rewarding experience.

Cherie Rineker:

Thank you, Barb.  I see you wrote an article at one point about to trial or not to trial, that’s the question.  And I was very surprised in my research how few people actually participate, grownups versus children.  And I found it wasn’t just the grownups fault, or not wanting to do it, but it’s actually not as easy as Matt and I found with the CAR‑T, and maybe some of you as well, to get into a trial because there are so many requirements in order to get into that.

Did any of you have that issue or an issue of travel, money, or health that made getting into a trial challenging?  Matt, start with you.  I know you had to travel very far.

Matt William:

Yes.  When was I was diagnosed I was in Alaska.  There wasn’t really a myeloma specialist, and we got online right away and found the Seattle Cancer Care Alliance, and we’re really happy there and found a great doctor there.  But we had‑‑for my first transplant we relocated down there for 10 months.  Luckily, they had a little school and some‑‑for our kids and some housing.  But it was expensive.  It wasn’t free.  They had a social worker that helped us a lot, and we did some fund‑raising.  Lots of really great friends that helped out and just really streamlined our finances and our bills and sold a lot of stuff to fund it.

And, yeah, it was very expensive, and yeah, over time it’s really taken a toll on all of our savings and investments and all of that stuff.  But it’s worth it, you know.  Money can be remade and we can live simpler.  And so it was very much worth it.  If I wasn’t flexible with that type of stuff I wouldn’t be alive, so I had to do it.  And I would go to any lengths to find help and an answer to my problem.

Cherie Rineker:

Right.  Right.  Thank you.  Thank you.  I totally understand what you mean, having a young child in my family myself.  We have four beautiful daughters.  So thank you.  We’re glad you chose to hang in there.

Can anyone tell me about how they found out about the trial they joined?  Eric, can we start with you?  Today, online offers a tremendous amount of resources.  Which one, if any, did you use, and how do you stay informed about the latest trials?

Eric Wolf:

A little bit like Matt.  I made the decision to move to an area where I knew there would be good support when retired from the military, so I moved up into the LA area near City of Hope knowing that they had fantastic care and availability of trials and other things like that.  So I get most of my information through them.

Also, of course, read blogs and read information from the IMF and other things that are coming out.  And that all leads to trying to make the best decision.  So in the case of my current trial it was a matter of talking with my doctor and look at actually three different trials that were available, any of which could have been a good fit for me.

And then it’s a matter of which one‑‑then it’s kind of a matter of timing, right?  It’s just are you sick enough, ironically, to meet all the qualifications for this or that particular trial.  And so that’s kind of how I made the decision in concert with my doctor looking at the options available.

Cherie Rineker:

Right.  Thank you.  Thank you for sharing that.  Brian, what about you?

Brian Helstein:

I was on the fence about having a stem cell transplant, not on the fence about joining a trial.  And the‑‑my caregiver, my darling wife, basically pushed me off the fence and said, you will have this.  I’ve heard your doctor say that you will have a much better opportunity for long‑term survival if you go through with this.

So at City of Hope, as I was being interviewed and prepped for the stem cell transplant, they gave me a list of options which included amongst other things the participation in a trial.  And I was impressed with what they were looking at.  I was impressed with what the options were.  Unlike Eric’s comment about the shingles trial where he might have gotten a placebo, there was no placebo involved here.  There was standard of care treatment, there was standard of care plus and standard of care plus plus, which was what was going to be offered.

So it was at that point a fairly easy decision saying, okay, I have made this commitment to go ahead with the transplant, so let’s see about going ahead with the trial and, as I say, being disciplined enough for follow directions.  But it wasn’t‑‑there was no hesitation about it.  It was not something where there was a specific start date, again, like Eric, where I needed to fit in or I needed to be so sick or so healthy.  It was very much you’re going to do a stem cell transplant, and then beyond that we’re going to put you into one of these three arms and we will monitor you from that point.

Cherie Rineker:

Right.  Right.  Thank you, Brian.  Barb, I’m not sure.  Did I already asked you this question, or do you have anything to add?

Barb Hansen:

Well, my stem cell transplant was part of a clinical trial, and when my doctor said to me with a stem cell transplant you might be able to take a drug holiday.  That was appealing to me, so that combined, you know, being part of the clinical trial then was a bit of a driving force.  I hated being on dexamethasone.  I did not sleep well for, well, a long time.

And then, you know, I just can’t encourage people enough to find a multiple myeloma specialist who really knows this complicated disease and treats people individually and just knows what’s best for the patient.  And I was very glad that I joined the clinical trial, and I certainly advocate for them whenever I get a chance to.  Thank you.

Cherie Rineker:

Excellent.  So what advice do any of you‑‑do we all have for those myeloma patients that feel overwhelmed now and through the entire process, what they can do when they feel they’re running out of time or options?  What is it that you would like to tell them?  What has helped you on the internet?  I know Brian at SparkCure really helped me to find the trial that I got into, BB2121, a Celgene CAR‑T trial that ended up giving me my life back.  Just like Matt, I only had a couple months left.  What would you tell others?  Eric, do you maybe care to answer that first?

Eric Wolf:

Yeah.  So this disease of course is real science‑e, and we’re always thinking one step ahead, what’s the next thing, what’s the next thing?  So part of that calculation should be clinical trials, and so you have to keep up with what’s going on with those.  There’s a lot of information out there in different blogs on Cancer Care Network, on Sparks, and those types of things.

Of course, if you’re fortunate enough to be associated with a Cancer Research Center like City of Hope, then that’s a great opportunity.  They have posters throughout the campus about different trials that are going on, and of course I can reach out to my doctor at any time and look at those things.  But I think that all goes into our calculation of how we’re going to manage our disease and what’s the next step for us.

It’s‑‑different people have‑‑and I’ve ebbed and flowed over the years about how much I want to be involved, and sometimes you just want to take a break.  You just want to just do whatever my doctor says, and I don’t want to think about this disease for a while.  I just want a couple of months off.  We have that option, but it always comes back and comes to the forefront.

So I think as‑‑the advice is to look ahead, think ahead, keep up with what’s out there, but don’t let it overwhelm you.  At some point you have to live your life and just not‑‑you can’t live for the disease, live every day thinking about the disease.

Cherie Rineker:

Right.  I think we all agree with that, Eric.  Matt, what would be any of the advice you would give?

Matt William:

Just going back to how I accessed some of the trials.  It started with me, just through my doctors.  I had three trials that were just recommended by my specialist, and then it led to‑‑once I got to the CAR‑T cell therapy it was a little harder to find.  And I started with the Leukemia and Lymphoma Society, and they were very helpful, and they actually taught me how to do a little searching myself.

And then I got into some Facebook chat room type stuff where I was getting more information, and that’s where I met you.  And you recommended SparkCure, so it kind of led to that.  And I was doing my own stuff, and I met couple other people that kind of were like Brian, helping out.

But ironically, it turned out to be, you know, I like sending little messages, private messages to people and making acquaintances, and I became friends with this guy, Grant, from South Africa.  And he’s the one who told me about the trial that I finally got into, and it was at the very hospital that I was at, but I was unaware of it.  And he told me so early I got my name in there.

So I think, leading up to your question, persistence, you know, and don’t give up.  And just take it one day at a time.  And I like the advice of don’t get overwhelmed with it and just keep a good attitude.  And then ultimately be flexible.  There’s a lot of help out there and I’m continuing to be helped with my air fare and stuff like that, I forgot to mention before.

And so there’s a lot of‑‑don’t get overwhelmed by the money.  There’s some help out there for that, too.  And just one day at time and don’t give up and just try to reach out to other people and get‑‑the personal information, one patient to another online probably ended up being the most beneficial to me.

Cherie Rineker:

Thank you, Matt.  And I completely agree with you.  I’m pretty busy on Facebook myself, and I had people pushing me when my body and my mind could not handle any more and I wanted to give up.  And there was one lady in particular who just kept nagging me about it, and just to quiet her up I started following her advice and stuff.  And then one thing led to another, and I’m sitting here today because of these personal experiences.

And just the other day there was a gentleman who just basically said, I’m at the end of the line, can’t do no more, and I’ve been working really hard today and yesterday to write letters and talk to my doctors and to try and get him, because I know when we’re that sick sometimes it’s really hard for us to do it ourselves.  So absolutely there’s support you can get online‑‑

Matt William:

One more thing, Cherie.  I forgot to mention, it’s so important, Patient Power has been amazing with their videos and these interviews, and it really helped get me pointed in the right direction as well and some hope about CAR‑T cell and a little extra information and got me excited and added some hope to my journey.

Cherie Rineker:

Absolutely.  Absolutely.  We owe a lot to Patient Power.  What about you, Barb?

Barb Hansen:

I’m very pro clinical trials, and I do have a couple of venues where I’m able to encourage people to check out that option.  One is our multiple myeloma journey partner program, and because I tell my story there having had a stem cell transplant I also include the clinical the trial stories.  And so when I’m doing that I encourage people to check out the possibility, the option of going through a clinical trial.  And here in the United States we really need to encourage people to do that.

And then the other avenue I have is through the Leukemia and Lymphoma Society first connection program.  The Patti Robinson first connection program where I get calls from the society asking me if I’m available to talk to a person who is in another part of the country or here in Colorado.  And so it’s a person who just wants a call.  They’re either newly diagnosed or they’re going to go through a stem cell transplant or they’re considering a clinical trial, and so we chat and talk and I, you know, point out what I’ve been through and what has worked for me.

Always encourage them to talk to their doctor, and I don’t give medical advice by any means, and it’s encouraging.  Very rewarding to talk to people like that.

Cherie Rineker:

Thank you, Barb.  Yeah, you just taught me about two things I’d never heard of, so that is wonderful.  And I really think when patients talk to each other we can tell other things that the pretty pamphlets that are sent along with our Revlimids or our Velcades doesn’t always talk about all the things that we really experience.  So it’s wonderful to hear a person who’s been there explain things to us.  You, Brian?

Brian Helstein:

What I would tell somebody, first of all, is take a deep breath.  It ain’t going to kill you today.  And then the second thing, as we move forward with this, after you’ve had that deep breath, start evaluating what’s important to you, how hard are you prepared to fight this.  This goes to what Matt was talking about, the kind of thing that Eric was talking about.  What drives you?  What motivates you to keep going, and to keep those things in your mind?  It will make a tremendous difference in how you approach your various treatment options, the people you work with.

Barb was just talking about talking with, working with her doctors, and one of the things that I think all of us will agree on is you have to feel comfortable with your doctor, and if you don’t, it’s time to find a different doctor, a different treatment facility, whatever.  You need to be comfortable as you’re working with these people.

And, again, I think it was you, Eric, said sometimes you want to turn your mind off and stop worrying about this thing for a little bit.  I find that that’s fairly easy to do as long as I keep in front of me why I’m prepared to keep fighting, to keep going.  At that point, having made that decision, having put that focus on, it makes it easier for me not to focus on being sick.  And that’s something I would tell somebody, is why are you here?  What do you want to do with the time you’ve got left?

None of us are getting out of here alive.  Seriously.  All a diagnosis of multiple myeloma does is say, okay, you’ve got something that can kill you, and now you can put a name on it.  That’s bringing home in a very visceral way something that we probably intellectually knew but were not emotionally prepared to deal with.  And so focusing in on what’s important becomes very important part of moving forward.

Cherie Rineker:

Having a purpose in life is so very important.  I always tell people that even when you have cancer you can beat this disease if you keep in your mind you can, like you said, know what’s important, why you’re fighting to stay here, and then just do what you have to do.  Absolutely.

I would like to ask one final question of all you, all my guests here today.  How is life treating you today?  How are you feeling?  How are the drugs doing?  How are the side effects?  How are you sleeping?  And what is motivating you?  I know, for you, Brian, it’s your running, correct?

Brian Helstein:

Well, I’m working on the retirement actually.  Running is just like you brush your teeth in the morning.  That’s just a normal activity that I do.  Yeah, it’s just something that is part of my daily life, but, no.

I’ve been running a program for the University of Southern California, for example, that enables access to all of our licensed electronic resources, books, journals, databases, for the last 13, 14 years.  And I’m trying to clean up my sloppy programming, document my work, and train the people who will be my successors.  So that’s my real daily operational motivation at this point.

I’m not doing anything other than looking forward to some silly things in retirement.  I want to be on the Champs‑Élysées one day when the Tour de France ends.  Okay?  It always ends on the Champs‑Élysées.  That’s one of my goals in life.  It’s not a major driving force.  I have five adult children.  I would love to see some grandchildren.  That’s something you can’t control.

Cherie Rineker:

Right.  Eric, what about you?  How are you doing these days?  You look really healthy.  All of you, by the way.  Looks like we’ve taken on the beast and we’re winning.

Eric Wolf:

Like Brian, I’m trying to retire again.  After one retirement from the military I’m trying to retire again and just kind of working on some other things.  The clinical trial I’m on now, it’s been very rough.  It’s pushed my blood counts down, so I’ve had trouble with bruising, had trouble with shortness of breath and just getting enough energy.  So working through that, and who knows where this will lead, maybe CAR‑T or something else.

But, ultimately, the things that I like to do, I like to ride my motorcycle.  I like to backpack and camp, although the backpacking has been kind of cut short these days.  Just have done a lot of that over the years.  And looking forward to spending more time with the grandbaby.  We have a two‑year‑old granddaughter now, so enjoying that time.  I will say though, ultimately, my hope is in eternity.  And that’s from my Christian faith.  I’m enjoying life.  I’m enjoying fighting the disease, I actually am, and I’m positive about that.  But, like Brian mentioned, we’re all‑‑we’re all going to die eventually, so my hope is ultimately in eternity and the joy of that.  So that’s kind of where I am.

Cherie Rineker:

Thank you for sharing.  Very nice.  How about you, Matt?  Girls keeping you busy?

Matt William:

Gosh, yes.  I have so much to live for.  And I just turned 50.  We didn’t think that was going to happen.  We’re expecting a grandchild in December, I didn’t think that was going to happen.  We just found out about that.  And, you know, I really like what you just said.  You know, cancer hasn’t been all that bad to us.  It’s been‑‑we’ve had our share of struggles.  But I’ll tell you what.  Our quality of life has actually gotten better.  It’s brought us closer together, closer to our god, and we just really don’t take things for granted so much anymore.

And there’s a lot more to look forward to in the future.  I’m an avid surfer, or was.  I haven’t been out in the surf in over a year, and‑‑because of some phone problems, but I’m thinking that’s not too far away, that I’ll be able to start slowly back at that.  And just continuing to raise these kids and enjoying life, you know.  And just one day at a time, not worrying about what’s coming next all the time, you know.  I feel like I have that little break right now.

Cherie Rineker:

Absolutely.  Enjoy it, enjoy it, my friend.  Thank you.  What about you, Barb.  What are your aspirations?

Barb Hansen:

Well, I’m just so thankful to be here.  When I started Googling back in 2006 and even talking to my dear doctor, Dr. Jeff (?) Mathes at Colorado Blood Cancer Institute, Richards Rocky Mountain Cancer Center, you know, back then the average life expectancy was three, four years, and now it’s upward of 10, and I’ve beat that so a far.  So I am just so thankful to my healthcare team and just grateful to be here enjoying my two grandchildren, who I did not think I would have either.  Forest and Estelle, they are the joy of our lives.  Really enjoy them.

I golf a little, nine holes.  I do get tired because.  Of all of back issues, the bone fractures that I had, I do tire.  I love doing the volunteer work that has come my way, and now there’s more work they’ve asked me to do primarily through our church.  And I’m going to have to start saying no.  You know, I’m just taking a break and really enjoying life.

Tomorrow I’m going to Boise to talk to a support group about my journey, and I look forward to those times.  It’s really neat getting to be with other people who have this crazy disease and just showing them I’m still here.  I went through a stem cell transplant, a clinical trial, and it’s encouraging to help give other people‑‑help them with their journey and be hopeful.  Faith, family, and just enjoying the outdoors, creation.  That’s what it’s all about.  Thank you.

Cherie Rineker:

Yes, thank you all.  For me too it’s my family.  It’s also I became a huge advocate just for myeloma patients.  Because it took so long for them to diagnose me I always thought if my story and my symptoms are out there and somebody is seeing a YouTube of mine and that makes them go to a doctor and find out and say, hey, I want an Kappa light chain test or a Bence Jones 24‑hour urine test or anything.

Or even a doctor that would become more aware because we are putting ourselves out there with our stories, and if even just one person won’t be diagnosed with stage III but maybe as stage I and have a better chance of long‑term survival then I’m extremely grateful for putting myself out there.

So besides enjoying my family I really helping Patient Power and anybody else who comes knocking on my door, whether it’s through Facebook or companies giving talks, giving interviews, anything like that.

So I want to thank you panel for sharing your stories, giving your advice with us today.  As we all know, myeloma is a very difficult, painful disease to control, and I know without online support and things like Patient Cafe and SparkCure it would be a lot harder for me and I likely wouldn’t even be here today.

Thanks also to our listeners for tuning in.  We hope we were able to answer some of your questions about trials and how to get into them.  Reach out to Patient Power with any questions, please.  And we hope you’ll tune soon in again for our next show.


Please remember the opinions expressed on Patient Empowerment Network are not necessarily the views of our sponsors, contributors, partners or Patient Empowerment Network. 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.

 

Living Well with Lung Cancer: Mind-Body Medicine

Mind-Body Medicine: How Can Cancer Patients Utilize Supportive Care Therapy Tools?

Recent studies support mind-body interventions, like yoga and mindfulness, as being responsible for helping to stabilize and manage symptoms and side effects of treatment. Preliminary studies show that mind-body medicine has the ability to lessen fatigue, anxiety, respiratory toxicities, sleep disturbance and emotional distress for not only patients, but care partners. Watch along as Certified Yoga Therapist Raquel Jex Forsgren and Dr. Ishwaria M. Subbiah explore mindfulness.

To see all our Lung Cancer programs, please visit our Lung Cancer page.

Downloadable Program Guide


Transcript:

Andrew Schorr:

And hello.  I’m Andrew Schorr with Patient Power.  And (? Inaudible).  We’re going to help you be more in control of your cancer journey, you as a patient or you as a care partner.  And I want to thank our sponsors for the program, Celgene Corporation, Genentech, Helsinn and Novartis for their financial support.

Now, you can send in questions if you haven’t already.  Send them to questions at patientpower.info, questions@patientpower.info, and we’ll take your questions later on with our experts.  Okay.

What are we discussing today?  Well, think about it.  If you have lung cancer or, like me, chronic lymphocytic leukemia‑‑I have another cancer too, 22 years I’ve been dealing with this, some of it‑‑myelofibrosis, a myeloproliferative condition, if you have multiple myeloma or pancreatic cancer, whatever it may be, you may get hit with heavy duty treatment, and that has side effects.  How do you cope with that?  And then you have all the issues that go with your diet, if you feel like eating, your mental health, your physical health.  Are you moving?  What are you doing?  The same for your care partner as well because they’re there along the way.

We’re going to be discussing all that, and we have some leading experts and I want to introduce them.  First of all, I want to start with my wife, Esther Schorr, who has been on this journey with me for 22 years.  Esther, welcome to the program and being my partner in life and on this.  Hi, Esther

Esther Schorr:

Oh, I can’t say that it’s been easy being your partner all these years, but it’s my pleasure to be here, and it’s been a pleasure to go along on this‑‑not a pleasure, but I’m happy to go along on this journey (? Inaudible).

Andrew Schorr:

Right.  In a minute we’re going to talk about some of our coping strategies, but I want to introduce you to our two other experts on this.  First of all, let’s go to Houston, Texas, to the MD Anderson Cancer Center where we’re joined again, because she’s been with us before, Dr. Ishwaria Subbiah, who is assistant professor of palliative, rehabilitation and integrative medicine.  Dr. Subbiah, welcome back.

Dr. Subbiah:

Thank you so much for having me.  It’s a pleasure to be here.

Andrew Schorr:

Okay.  We’ve got a lot to talk about.  And now let’s go up to Chicago where we’re joined by an expert in yoga, a certified yoga therapist, and that’s Raquel Forsgren who is an expert in yoga as it applies to cancer.  Raquel, welcome to the program.

Raquel Forsgren:

Thanks, Esther.  Thanks Andrew.

Andrew Schorr:

Okay.  Let’s go back to Esther for a minute, and we’re going to catch up with you two in just a minute.  So, Esther, a little about our story, when I was diagnosed with leukemia, when we were diagnosed, if you will, 22 years ago with chronic lymphocytic leukemia I didn’t say this to you, but I thought I’d be dead in short order.

Esther Schorr:

Well, I didn’t say it to you, but I was concerned the same way, Andrew.  It was very, very frightening.

Andrew Schorr:

So the diagnosis sends any of us reeling, and the care partner as well.  So let’s talk about that.  Esther, you had me getting distilled water for the house.

Esther Schorr:

Distilled water for the house‑‑

Andrew Schorr:

Wondering if we should move away.

Esther Schorr:

Yeah.  We wanted to move away from power lines and went to an energy therapist.  I think you even had hot stone therapy.  I can’t remember all of the things.  We were juicing at the time Andrew Weill had his‑‑

Andrew Schorr:

He had me stop drinking coffee because you saw a program with Dr. Weill from University of Arizona, an integrated medicine expert, and he said, well, maybe you shouldn’t drink coffee.  We lived in Seattle where there’s a Starbucks on every corner‑‑

Esther Schorr:

It was really hard.

Andrew Schorr:

And expanding, so.

Esther Schorr:

Yeah, but there were other things, Andrew, really more relevant.  I mean, those are the things that I think you and I thought, well, maybe we can get some control over what’s going on.  But really at the root of some of this is the things that really helped us, at least I can talk for myself.  I know you and I went into counseling to try to figure out how to cope together, and for me knowing that I had to be your care partner‑‑and we also had two small children at the time‑‑I’m a very anxious person by nature, and I found, and it may not be right for everybody, but I found that medication really helped me.

And that started about the time that‑‑it started at the time when you were diagnosed and to this day it’s really been helpful to me and I can’t wait to talk to Raquel because I now do yoga, and we’ll talk about that.  Yoga has helped me tremendously along the way.

Andrew Schorr:

And we did continue to exercise.  Esther and I have been joggers, if you will, and so we did that, and we continued that as I got chemo and other treatments.  Maybe we couldn’t run as far or I didn’t run as far or as fast, but we’re big believers in exercise to this day.  And it’s helped.  And the one other thing I would say is the religious component, we’re Jewish, so we would consult with our clergy and trying to get my head on straight related to our faith.  And if life would be shorter, how did we live our life, what would we say to our children or whoever would follow about what our life was.  So religious, psychological, exercise, medication support, right, Esther, related to anxiety.

Esther Schorr:

And leaning on community.  You know, I know for some people it’s hard to ask for help, but if you can find it in yourself to let go a little bit of your ego and pride.  I know for me and I think for you too, Andrew, just reaching out to our closest friends and family and saying, hey, we need some extra support.  Give us what you can, was really, really helpful.

Andrew Schorr:

Right.  All right.  Dr. Subbiah, let’s have some terms that we understand as we begin.  So, first of all, your palliative care, you’ve explained this to us in other programs, it’s not about necessarily you’re near death.  It’s about helping support you on your cancer journey.  Supportive care, what does that mean?  Mind‑body medicine, what does that mean?  So maybe you can define some of this for us today so we all have a common lexicon, if you will.

Dr. Subbiah:

Absolutely.  And so when you hear the terms “palliative care” most people, the first thing they think of is hospice care.  So something that, a service that’s engaged towards the end of life.  But the reality is that palliative care is symptom management.  It’s been taking care of that whole person and the people around them who matter to them as they go through the treatment for cancer.

So palliative care, we’re involved more and more, really from the time of diagnosis because most people feel the burden of this diagnosis, sometimes even before because you know that something is wrong leading up to the diagnosis for many people.  And so a bulk of my practice is taking care of a person as they go through cancer treatment.  So we refer to that as supportive care.  We’re supporting you through (? Inaudible).

So things that may come up, cancer pain, nausea, trouble breathing, depression, anxiety, distress, spiritual distress, spiritual pain.  So there are many elements that go with this diagnosis of cancer.  So our multidisciplinary team helps with managing that in the supportive care realm.

Palliative‑‑supportive care falls under palliative care, and so there is a component that is closer towards the end of life where the‑‑your body is going through the changes that are very natural.  And we want to make sure that the suffering that you’re afraid of or somebody who cares about you is afraid of, we can minimize that to a great extent.  The pain of that moment of life may not change, but the suffering that we associate with our passing from any reason doesn’t have to be there with the engagement of a palliative care physician.

Andrew Schorr:

Okay.  I want to get to mind‑body connection.  So this has been a debate in the medical profession for years, both for you and maybe your care partner.  So do we have like some control with the way we live our life or think about things that affect cancer?

Dr. Subbiah:

So mind‑body, there are many schools of thought on what it is, but if you put all the academic aside the meaning comes down to exactly what’s words are.  Your mind is very closely related to your body, and your body function is very closely related to your mind.

So what it means for us in the realm of cancer care either as a provider or as a patient is there is a component of everything that you’re feeling that can potentially be modified by mindful practices.  It may not change it altogether, it may not make it go away altogether, but there’s a component of symptom management that is beyond medications, that’s beyond a pill that involves practices that are what fall under the realm of mind‑body practice.  And so some of these are ones you’re heard of, acupuncture, massage therapy, guided imagery, music therapy and certainly yoga as well.

Andrew Schorr:

Yeah, and generally exercise.  Okay.  So you mentioned yoga.  So, first of all, there has been a study to show I think preliminarily that yoga, and I’m not sure if it was done at MD Anderson or where it was done, where there was a benefit they said for yoga, for yoga participation, both for the patient and especially the care partner, right?

Dr. Subbiah:

Absolutely.  And so that study was done at MD Anderson, and it was spearheaded by our department.  So what we wanted to show is that for a person who is going through chemotherapy and radiation for their lung cancer, that would a structured yoga intervention help them as well as their caregivers.  So what you’re looking at is an intersection where we not only acknowledge the distress of the person with the cancer and going through treatment but also of the person who is going with them on that journey.

And so this yoga intervention was structured to be given to both‑‑to be practiced by both the patient as well as their caregiver.  And so it was done for a 12‑week period with follow‑ups subsequently.  And we were able to show that there was a statistically significant and clinically meaningful difference improvement in the level of fatigue, in the level of activity in that person, which we measured by a six‑minute walk test.

So if the person was able to do a bit more physically as a consequence of participating in this program when compared to the control arm, which did not receive this structured yoga intervention.  And so there are implications on your functional standards, your mood, your energy level of adopting mind‑body practices.

Andrew Schorr:

And this was done for the caregivers as well, wasn’t it?

Dr. Subbiah:

Absolutely.  And so the caregivers also reported an improvement in their overall mood as a consequence of this.

Esther Schorr:

(? Inaudible) I’d just like to interject as a caregiver, a care partner, and I know that Raquel probably will mention this, but I know that there’s a whole range of things that fall into the category of yoga and mindfulness, and again people talk about that, but I know for sure that I have experienced the mind‑body connection in controlling anxiety.  The anxiety thoughts about what‑if in the future for you, what if for user family, that in the mindfulness and the breathing and the things that come with yoga, not just the positions that you do, and I know we’ll talk about that, but it’s more about centering your thinking more positively and turning inward and visualizing good instead of bad scenarios was tremendously helpful.  So (? Inaudible).

Andrew Schorr:

Okay.  All right.  So, Raquel, I’ve got some questions for you.  So you have a background related to yoga and cancer and sort of yoga tied in with cancer.  Tell us what that means and how you got involved in that because normally you wouldn’t think of that.

Raquel Forsgren:

Yeah, how it came to be.  Well, I started researching breast cancer on the bench about 28 years ago and into the pharmaceutical side, on the drug development with side as a pharmacologist, and obviously it worked with a multitude of different types of cancer, and it’s been my passion my whole entire adult life.  And I’ve also had several family members that have gone through the battle, some have won, some have lost, and so it’s very personal for me.

And then on the flip side with yoga therapy, just as Dr. Subbiah was talking, I like to see the entire person, the whole person be addressed.  And we need the oncologist to focus on the treatment and doing all they can to really fight at the disease level, but I think, as all three of you a have just mentioned, a yoga therapist comes in on the other side with what else can you do to help empower the person to actually take control over what they can.  Because there’s so much of a loss of control.  So I’m inspired by that.

And then I work with a lot of the other tools that we’ll talk about in a minute to just help that person control their mind, their breath, their thoughts, their rituals, all positive things that Esther was just talking about.  So that’s sort of my background and my interest in how it became to be working with cancer patients.

Andrew Schorr:

Okay.  So Esther is into yoga.  Esther, you started doing that what about four or five months ago, and now you do it two, three times a week.

Esther Schorr:

Right.  And actually I’m kind of sad I didn’t do it sooner.  But I will say I came into it because I was transitioning to much more let’s say aggressive exercise, running, some weight lifting.  But I found that the combination of yoga‑‑you know, a combination of yoga and the mindfulness and (? Inaudible) somewhat medication is really not hard on my body and really good for attitude.  So, yeah, I mean, I’m a big advocate.

Andrew Schorr:

Okay.  So, Raquel, so yoga might be foreign to people.  I mean, I knew‑‑I learned how to run and jog, but if you had asked me until Esther has been exposed to yoga I’d say that’s foreign.  So maybe you could ease us into it.  Maybe there’s some simple things you could show Esther or you two could demonstrate together that would be helpful for maybe the bulk of us who have never gone near any of this stuff but we do want to feel more in control.

Raquel Forsgren:

Yeah, I definitely will.  First of all, I will say that’s a myth.  There’s a lot of myths around yoga with not being able to do it because it’s too rigorous.  You mentioned Esther kind of coming from a rigorous running, jogging.  A lot of people think of yoga and they think of the postures that they see on social media or in magazines or TV or whatever, and they’re upside down where they’re doing different things, and that’s a beautiful aspect of yoga, but it’s only one.

There are so many different things we can do with yoga, the postures, the breathing, the imagery, as Dr. Subbiah talked about, and deep relaxation, which multiple studies have shown that can actually reset and rebalance someone’s nervous system.  So talk about mind‑body and being able to control that yourself.

So if you’d like to go you through a few techniques now we can do that.  What I would do is invite all of you who are viewing the program to do it with us and see if you can sense the difference in just a few minutes of doing some of these very simple practices, and then what you can do after this is recorded come back to this video and watch the practice again and just implement these, like Andrew said, a little bit on your own.

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.

That’s in a nutshell what I would say.  So that was about five minutes.  You tell me what you noticed.  How did you feel after doing it?

Andrew Schorr:

Well, as a patient I’m more relaxed.  I think I need a nap.  I’m worried about‑‑Dr. Subbiah has probably got (? Inaudible).

Dr. Subbiah:

Oh, I’m in a good place, so thank you.

Esther Schorr:

I can tell you that it steadied my breathing.  It’s deeper.  And my heart rate just calmed.  It just calmed.  I mean, it wasn’t super agitated before, but as we went through that exercise it’s just, I’m like even.  I’m like even.  That’s the only way I can explain it.

Raquel Forsgren:

Yes, that’s the most common description.  Thank you.

Andrew Schorr:

So, Raquel, a few questions.  Okay.  So let’s say we have 100 people here who are more relaxed, and they say, well, okay, I get it.  How can I be trained to do this again, either alone with others?  How does that happen?  So wherever people are, and they could be all over the world watching, how do they seek out resources to do this?

Raquel Forsgren:

Oh, it’s such a great question.  I would say across the country, particularly in cancer centers now, especially like MD Anderson and even the clinics.  It doesn’t have to be within the context of a big academic institutions, just ask.  Ask the nurse.  Ask your social worker.  I’m working with a lot of social workers now within the context of support (? Inaudible) support groups, so we’re mixing talk therapy with mind‑body.  So just ask your nurse navigator or any of them.  So that’s number one.

Number two, it is important to look for someone that is certified as a yoga therapist because we’re trained as a subspecialty in trauma, in serious disease, in cancer.  So that helps.  And you can go to the International Association of Yoga Therapy.  Go to their website and type in your zip code, and any number of certified therapists will come up with that information.  So those are two simple ways to find it.

Andrew Schorr:

Okay.  Dr. Subbiah, okay.  So‑‑and you all picked yoga as the modality you were testing as well.  So, first of all, what’s your take on what we just did, and what would you say to our folks as far as making use of that along with other approaches?

Dr. Subbiah:

So I went along with all of you and did this myself, and so everything regarding the heart rate, breathing, I’ve experienced it, and I noticed that my shoulders are much less tense.  So that’s always something that I notice when I do this in my office.

So yoga can be intimidating in that some people think that you need to set aside 40 minutes, an hour to do this.  The reality is you can gain benefits really in a very short period of time, and that’s one of the elements that we’re testing.  Is initially if an intervention, a yoga‑based intervention is a 45‑minute session, do we still have the same effect when we do a 30‑minute session, a 20‑minute session?  And we’re working on one now that’s an 11‑minute session.  So we want to see if the beneficial effects in people going through cancer treatment and their caregivers can be experienced by shorter and shorter time sessions.  And so we’ll put that data out once we get it.

Now, the two ways, the easiest ways to access it, are like what was said, which is engage your healthcare team and ask them about resources with integrated medicine within their practice, within their nearby hospital, within the city.  And so at MD Anderson we have a separate department of integrated medicine that’s devoted to the alternative and complementary aspects of care of someone with cancer.

And so the integrative center has classes every day in tai chi, Qigong, multiple‑‑every day that’s open to anybody, and so the patients, caregivers, whomever comes with them.  And so we would encourage our patients to take advantage of that, especially if you have an appointment in the morning and maybe an infusion in the afternoon and there’s some time in between the day is to go and spend that time in the integrative medicine center.

The other resource that I use is the integrative medicine center’s web page within MD Anderson.  And so you can access it from anywhere in the world.  Just Google integrative medicine at MD Anderson.  It will come up.  And there we have several videos there with our yoga expert here.  Dr. Alejandro Chaoul is one of the world leaders in yoga in the context of cancer therapy.  And so (? Ali) has several videos where he guides you through this.  So I’ve done this at home.  I’ve done this in the office.

And so you can open it up, do it on your smartphone and try it out.  And you can go back to it as many times as you want.  And don’t forgot to go back to it.  It’s not a one‑time.  The benefit comes from doing it repeatedly over the course of‑‑really it’s a lifestyle modification, so.

Andrew Schorr:

Esther, so you’ve made this part of your life now.  So I did feel a benefit just doing this.  And I did go to one class with you, so I’ve got to go again.  But as a caregiver, what do you see?  What change have you seen?

Esther Schorr:

Well, you know, other than what Raquel pointed out in that demonstration, for me, I’ve seen myself become physically stronger now, and I’m well aware that (? Inaudible) cancer patients some of the more advanced parts of yoga, the physicality of it may or may not be appropriate given what your mobility is and your physical being.

But if it is, whether it’s a caregiver or a patient, the really good thing about yoga that I found is it’s not a competitive sport.  It is a practice, and it’s very individual.  So you can do as much or as little as you want.  The mindfulness part, the breathing, what we just did, everybody can do.  And then you can build on that if for example you’ve gone through treatment and there are parts of your body that you have strength or you want to build strength yoga is very‑‑it builds on itself, so you can just build it at your own speed.

And so, for me, I found it’s not tough on my body like running was.  It accomplishes to lower anxiety, etc., and at the same time what I found is it strengthened my physical body and my ability to tolerate other stressors.

Andrew Schorr:

Right.  And as a patient I have definitely seen a change in Esther, which has helped me be calmer as well.

Esther Schorr:

Oh, I’m glad there’s that by product.  That’s great.

Andrew Schorr:

So Raquel, are there video you’re‑‑so great.  Are there videos that you’re in as well that we can link to that would be helpful?  I’d love to see again.

Raquel Forsgren:

I do.  Actually, I have a YouTube channel that has just a couple on there that I focused around, a long, deep relaxation, and this is one we didn’t talk about today much.  It’s about a 25‑ to 30‑minute deep relaxation, and it works through progressive muscle relaxation, body sensing, using the breath, and also really gets into the subtleties of the mind and what you’re starting to think about and process emotionally while you’re relaxed.  So that’s number one, and it’s on there.  It’s Yoga With Raquel.  That’s the name of it.

The other two that I have put on there were related to anger, grief, and dealing with difficult emotions and how do you welcome those and deal with them and process them.  And some of those I put on because of some people I was working with, was working with at the time, who were just diagnosed, and they had that swarm of emotions and they didn’t know what to think about what the oncologist had even told them.  They were angry.  They were sad.  It was just a mix.

So I created those just off of training I’ve had with Richard Miller and others to build those and put those out there for people.  And they’re free resources that anybody can tap into.  And they’re six and seven minutes long, but I would highly encourage anybody, especially I think for care partners, Esther like you and I have talked, you know, you’re wanting to be strong and be there for the person, for the loved one.  You don’t want them to see you falling apart inside or being afraid, and I think you need an outlet to feel what you’re feeling and then be able to go back and be present for the loved one.  And so that’s also been behind, in my mind, in creating a lot of these things now for that.  But, yeah, check those out for sure.

Esther Schorr:

Well, and yoga can be done together, too.

Raquel Forsgren:

Absolutely.  Absolutely.

Andrew Schorr:

So, Dr. Subbiah and Raquel and Esther and me, we’re getting questions, and if you have a question the best way to do it is to send it to questions@patientpower.info, and Tamara Lobban‑Jones, our wonderful producer, will help forward those to us.

Dr. Subbiah, I just saw a quick question that came in from Canada where someone asked, well, can yoga help with peripheral neuropathy pain?  So, for instance, our myeloma folks, some others, have medicines, and I think of those but there may be others across cancer, where you developed neuropathy in full or numbness, so what about that?  Or are there other ways to manage it, and that’s part of your discussion with your palliative care specialist?

Dr. Subbiah:

Absolutely.  Now, that’s a great question, and peripheral neuropathy, it can be anything from a nuisance to debilitating, and so it’s‑‑and it’s experienced by so many as a side effect of so many different cancer medications and so many of the other medical problems, like diabetes.  And so the impact on lifestyle can be tremendous.

And so we look at the pharmacological interventions that are out there that you may have worked with with your doctor, whether it’s the gabapentin or pregabalin or duloxetine.  These words may all ring a bell to some of you who are suffering from peripheral neuropathy.

The mind‑body realm just has some options for peripheral neuropathy, and these work in the same way that most mind‑body techniques work, which is in conjunction with (? Inaudible).  And so one of the interventions that we have data for to support its use in peripheral neuropathy, the primary one that comes to mind is acupuncture.

And so acupuncture, we have small trials that shows an improvement in the pain when compared to those who don’t receive acupuncture in their peripheral neuropathy.  So it does have a role when you use it for the management, and it may be that you use it in addition to a medication that you may have been taking that may have helped but not to the extent that you want it to.  So acupuncture has a tremendous role in the management of peripheral neuropathy.

The remainder of the techniques have a role in anxiety management, and even the distress that goes with having a peripheral neuropathy, so it’s not to say that there isn’t a role.  The whole concept of this is you have to take care of the whole person, so it’s not just about the pain in your left foot.  It’s the left foot that’s attached to that person who’s having to stop running because their left foot is bothering them.

So mind‑body techniques have a very important role, especially as you go later on in your treatment or as a survivor.  Some of these side effects stick around with you for a very long time.  So these mind‑body practices, you can take them with you for life.

Andrew Schorr:

We talked about anxiety, and Esther referred to that as a caregiver.  Previously and at other times we always talked about medication for that or depression as well.  What about some other things that come up?  I know when I went through chemo Esther had me taking ginger.  And I even had one of these little zappers like some pregnant women use for nausea, and that happened me, right?  But there were things like that.  And then I think I was an MD Anderson patient at the time, they even did have some other medicines, even suppositories I used because I couldn’t take anything by mouth.  I couldn’t keep it down.  And that helped me a lot.

So but that was in communication with my healthcare team.  So nausea, sleeplessness, anxiety, and even diet generally.  I know some people particularly with lung cancer have I think you’d call it cachexia or even myelofibrosis, which I have, where people just are like wasting away, right?  They’re not eating at all.

Dr. Subbiah:

Absolutely.  So this concept of cancer cachexia is very complex.  So from a medical standpoint it’s the loss of good muscle in your body and fat, and the reasons are not clear because you’re eating but you’re going through active treatment for cancer.  And what we attribute it to is the cancer itself, the chemicals, the cytokines that the cancer releases, the changes that it has on the body causing it to break down good muscle.

And so that has tremendous implications on body image.  If you don’t look the way you used to and you feel your appearance, your identity changing on a weekly basis, that can have a tremendous impact on your whole person well‑being.  And so at the moment there are really no effective treatments to stop cancer cachexia or even reverse it.  There are ways to potentially slow it down, and that may well mean meeting with the dietician to optimize the food that you take to make sure that you are getting enough calories, the right kind of calories.

Working with physical therapy on strength building, not necessarily to run a marathon but to have enough strength to go about your daily activities around the home, be able to walk and do things here.  These are ways to try to combat the physical changes that you feel.  So we brought up the anxiety as well.  So it’s‑‑mind‑body practices have a very important role in anxiety management.  And in fact I would say that the most robust data for mind‑body interventions, be it yoga, or massage therapy, meditation, guided imagery, is the management of mood and anxiety.

Andrew Schorr:

Right.  You talked about body image.  It’s all tied together in how you feel, how worried you are about the future, etc., so anything like Raquel was demonstrating to us is so important.

Here’s a question we got in from Pam.  I’m willing to bet she may be dealing with multiple myeloma, I’m not sure, but she says, what effect, if any, does high calcium levels have on the ability to exercise?  So anything‑‑I don’t know whether Raquel, you would comment or Dr. Subbiah, let’s start with you.  Calcium, you know, you have all these bone lesions and stuff like that, you can have this calcium problem but yet you want to do this stuff.  Any thought there, Dr. Subbiah?

Dr. Subbiah:

Sure.  And so hypercalcemia, it’s a very real medical entity, so you have to work very closely with your oncologist, with your physician, the provider team to make sure that the calcium is kept at a reasonably safe level.  What your body experiences as a result of hypercalcemia is real.  There is changes in energy pattern, changes in the strength, changes in your bowel function, changes in your mind and mood.  So hypercalcemia has real implications on really the whole body experience.

So it’s one of the electrolytes imbalances.  You know, you have‑‑I’m sure people listening to this have their potassium checked, their magnesium checked, the phosphorus checked among all other things at some point time during this journey.  Hypercalcemia is one where the person feels it a lot more than maybe another electrolyte that may be low or high.  So it’s very important to work with the provider team to get it down to a reasonable level, and know that some of what you’re feeling may be not necessarily the cancer per se or the treatment for the cancer.  It may be because of the electrolyte imbalances.

Andrew Schorr:

Wow.  Okay.  Raquel, go ahead.  You’re muted, so‑‑there you go.

Raquel Forsgren:

Yeah.  I think the one thing that I also would add to that too, Dr. Subbiah’s point about it affecting‑‑hypercalcemia affecting the whole body, the deep relaxation that I spoke about earlier, the way that that works specifically is around turning off that fight or flight mechanism in that part of our nervous system that kicks in when our body is in a state of trauma, which is kind of what’s happening in hypercalcemia from a just simplistic perspective.

And so when you’re in that deep relaxation state and leveraging the breathing, you’re reducing cortisol levels that are pumped out from your adrenal glands, and that entire cascade that happens in your body just starts to slow and relax.  And the neurotransmitters, the chemicals in the brain that are released, it’s just a cyclic event.

And so even though one might not be able to do any particular movements even, the breathing, the imagery and those deep relaxations shouldn’t be underestimated for the role they play in boosting the overall health of the inside off the body and all of the other mental components with it.  So I just wanted to add that little spin on what those do even if you feel like you can’t move out of your bed.

Andrew Schorr:

Well, thank you.  Here’s a question we got from Susan.  Susan wants to know, how can I protect myself from the effects of chemo outside of massage and meditation?  So chemo and even some of the non so‑called chemo drugs are very powerful and they have effects.  So, Dr. Subbiah, what about protecting yourself?  What can you do?

Dr. Subbiah:

So it’s‑‑there are added effects that one experiences.  That’s very different from therapy to therapy.  And so the interventions are, what you would do is dependent on the side effects of what you are taking at the moment.  So it starts with that discussion with your provider team.  What are the most common side effects, and what are some of the more rare side effects?  So it gives you a sense of what you’re most likely to experience and also to be on alert in case you happen to be that person who has a rare side effect as a consequence of the therapy.

Now, there are side effects from chemotherapy and targeted therapy and immunotherapy and cell therapy (? if anyone is on CAR‑T).  There’s only so much that can be done to protect yourself from this.  So the preventative aspects of the side effects is not there yet.  That is something that we work towards.  That’s something we hope to have so that the person doesn’t have the side effect to begin with.

So at the moment the way symptom management is is we have to‑‑we address the side effect after it happens.  And so the approach‑‑some of the most common side effects that are fatigue, nausea.  (? Inaudible) there are medications there.  You can talk to your medical provider about if there’s a role for a small, lower dose of steroids to help with fatigue.  If there’s a role for a lower dose of methylphenidate to help with fatigue, which is a stimulant.  So there are some data to support these in smaller trials.

There’s‑‑as with many medication interventions for fatigue management, the data is always mixed, and so there are some trials that think it’s important, others that don’t, and so at the end of the day my approach to it is if somebody’s having severe fatigue and they’re on a treatment that’s helping their cancer, treating their cancer, keeping it under control‑‑and we have a lot to gain from having the cancer under control‑‑let’s try a medication or two for the fatigue and see if it helps.  If it doesn’t help you, then stop it and move on.

But there’s so much variation from person to person, how you respond to a medication that’s there for supportive care and the side effects of the original cancer treatment.

Andrew Schorr:

Okay.  Raquel, here’s a question we got in from India.  I’m going to read that in a minute.  I just want to mention, if you have a question‑‑we have a few more minutes‑‑send them to questions@patientpower.info.  So this one is from India, and they didn’t give their name, but they said, how helpful is yoga for interstitial cystitis and with pelvic discomfort for a cancer patient?

So here’s somebody with that problem or I don’t know what the gynecologic cancer is, well, can yoga help at all just for the pain?

Raquel Forsgren:

Interstitial cystitis is a complex condition.

Andrew Schorr:

Amen.  It is.

Raquel Forsgren:

Even aside from the cancer component.  I see Dr. Subbiah smiling and nodding.  It would be kind of similar to the other mind‑body practices we talked about.  So the number one thing is relaxing the body.  It’s just relaxing the muscles.  Your pelvic floor and everything around it will tighten just as much as your shoulders or the other parts of your muscles, and the more you can relax them the better.

The more you can defocus away from that pain with guided imagery, that has also been known to help.  I don’t know specifically for interstitial cystitis, but I’m just talking about other types of internal pain, bone metastases, things that very‑‑you some things that are not on the outside of the body.  So I would say deep relaxation for sure.

Dr. Subbiah, for you, do you believe that pelvic floor postures could benefit someone in that way, or do you think that it could potentially aggravate the pain?  That could be kind of a follow‑on question because making posture is in really pulling the bellybutton in towards the spine and engaging that pelvic floor.  What do you think?

Dr. Subbiah:

So that’s along the lines of what I was thinking because you’re asking‑‑the person who asked the question is asking about a very specific condition, and so to my knowledge I’m not aware of any particular trials for mind‑body interventions for the purpose of interstitial cystitis.  And so then you start to think about, okay, what are‑‑what do we have data for where the symptoms may be similar and in a similar part of the body?  And so you immediately think of the gynecologic cancers where a person may have had surgery or radiation in that area of the body and causing over time that inflammation turns into a fibrosis.

And so I’m thinking of a woman who may have had a gynecologic cancer and having discomfort and pain, frankly, in that area and a pain that’s probably not going to go away because it’s a sequela, a consequence of the treatment.  And so in those contexts there is some support for mind‑body interventions.

The pelvic floor exercises are one that we do suggest, and so would it help with particularly interstitial cystitis?  I’m not quite sure simply because I can’t think of any data or a study where a person has asked that question.  And so my recommendation, as with all of these interventions, is to, number one, speak with the physician or provider who knows you the best, and have this discussion on, number one, do you think there is data, number two, do you think it will help, and number three, do you think it’s okay if I try it.

And then you take that information, you absorb it, as with all (? Inaudible), and then you make an informed judgment for yourself.  Okay, do I want to try this mind‑body practice?  I know that there isn’t a big randomized trial to show its benefit, but my doctor said it may not necessarily hurt me to try it, and so should I go ahead and make that attempt to see if this mind‑body practice will help me in any symptom that you could be feeling.

Andrew Schorr:

I want to ask about trying.  So we have women probably watching and some of them have had maybe lymph node surgery and maybe even dealing with lymphedema and may even wear (? sleeve) and things like that for breast cancer.  We have people who’ve had debilitating treatment for lung cancer.  We have people going through or have gone through transplant of various kinds, things like that.  So you see it, Dr. Subbiah, Raquel probably as well.

So you say, well, okay.  Do I‑‑how do I assess what I can do?  I can’t, you know I can’t‑‑maybe I can’t go to a class and Esther goes to classes and there are like 20 people in there and they do these different positions, and that’s a little a daunting to me, right?  So how do I celebrate what I can do and maybe increase that over time but at least I start.  So, Raquel, let’s start with you.  The whole idea of starting or trying even if it’s just like that, you know?

Raquel Forsgren:

Yeah, and I think that is one of the biggest things that stops people from trying, from thinking there’s something else they could do to help take control of what they’re going through.  It’s the daunting task of do I go to the yoga studio on the corner that I see people going in in these outfits and doing different things.  Like, I’m not that person.  And that’s the most important take‑home message I know I could give as I educate oncologists and nurses and people that are diagnosed with cancer to do is to do the research, do what Dr. Subbiah talked about, speak to the nurse, talk to the nurse navigator.

Look for classes within a hospital, number one.  Because they will be modified and tailored to people that are going through what you are.  And I know from a yoga therapist’s perspective I tailor yoga therapy sessions based upon the type of cancer, the stage of disease, even the types of treatment that the person’s going through.  I will tailor the entire practice around that with modifications.  And it changes.  It changes from at diagnosis maybe at second round of chemo to tenth round of chemo to post chemo, it all changes.

And so I would just be open, step through the fear, use this as a way to take control where you have the control.  You can’t control what the cancer’s doing, you can’t control the treatments the oncologist is giving you, but you can control your own lifestyle changes and your own quality of life.  And that’s what I love about yoga therapy is because it really does empower you because, as you all saw from just the small five minutes, you felt something.  You felt something shift, and that’s what will happen even if you do it for six minutes or 12 minutes.

And you do not have to be in a class at a studio.  You can do it within the context of even your own home.  And after you do some research you’ll find there’s a lot of online options.  You’re more than welcome to send questions in to Patient Power, and they can forward them to me.  I’m happy to try to help you find somebody in your local community that could even help you from a yoga perspective.  And I so I’m more than happy to help you as much as I can as well.

Andrew Schorr:

Wow.  You’re so devoted.  Thank you.

So, Dr. Subbiah, part of this is communication.  I think Raquel really explained about putting it in context and resources for people to start.  But there you are in your white coat.  All of us have doctors and be maybe we have multidisciplinary teams.  We have nurses and sometimes other kinds of therapists that we can draw on, but we’ve got to speak up, right?  So what would you say about whether it’s the patient themselves or the care partner, like Esther, to advocate so that we get these approaches brought to bear, whether we need training or medication in concert so that we get what we deserve?

Dr. Subbiah:

Sure.  So the field of complementary medicine, integrative medicine, it’s coming more and more to the forefront, but the reality is it’s always been on the periphery for really decades.  And so when you present a‑‑when you bring up an option of a particular mind‑body practice that you may want to try, the person listening to it on the other end, whether it’s your nurse, your nurse navigator, whether it’s your nurse practitioner, your physician or whomever it may be, they may not have been exposed to that in the course of their training and their years of experience.

And a person responds to that in different ways.  Sometimes if they don’t know about it they may dismiss it.  Other times they may be more supportive to say, okay, let’s look into it a little bit more.  But if they don’t have that background experience with it‑‑and that’s the way medicine has been for decades, so it’s not so much a fault of their own.  They just haven’t been exposed to it as much.

Then ask them is it okay if I pursue it a little more, do some more research and bring some information to you to help me interpret it.  And so I think we‑‑when we‑‑when you as the patient and the caregiver are gathering the information, just be aware that the person reading it may already be familiar with it or may not.  And then based on their level of comfort with it go forward in that discussion.

If they have recommendations that’s great.  If they don’t, we mentioned some of the resources where you can search online to find appropriately certified and trained personnel to deliver these mind‑body practices.  And so if you happen to be in a smaller area of the country or even in the larger area but don’t have immediate access to an integrative medicine center to at least get you started, then it’s a great way to‑‑it’s a great opportunity to do some of the leg work yourself and then work with your care team to find what’s right for you.

And you’re right.  The circumstances are that you may end up having‑‑when you end up doing your research you may actually know more than the persons in your (? Inaudible) just because of the way medicine has been but not where medicine is going, which is we’re all becoming much more cognizant.

Andrew Schorr:

Well said.  Esther, I want to get a final comment from you.  When I was diagnosed 22 years ago with chronic lymphocytic leukemia, we were in tears.  I felt like a victim, maybe you did too.  This came out of totally left field.  And I think our whole time with this has been what Raquel and Dr. Subbiah have been saying, trying to take back control.  And we’ve had providers along the way.  Some have been knowledgeable and some have not, but we’ve been trying to be advocates in doing what we can do, right?

Esther Schorr:

Right.  And what rings very true for me and our experience is Andrew shared and I guess I did too in a sense, some of these supplementary things that we researched and tried and it was always is this all right.  Let’s talk about this with his oncologists, his medical team.  And in one instance, I don’t know if you remember, Andrew, in one instance there we had read and done some research about accelerating the amount of a certain vitamin to help you when you were diagnosed with leukemia.

And we had the conversation with your oncologist at the time and he said, what vitamin supplement are you taking.  And when we told him, he said, I think you should probably not do that because in your particular case, in your particular kind of cancer there are studies that say that’s not a good idea.  So I bring that up in that this dialogue has always been really important for us, and I would think that that’s really what you both have been saying is research it, but before you dig in whole hog with some of these other complementary and supplementary things, have the dialogue with your medical team because some may be really helpful and some of it, there may be evidence that it’s not.  So, you know.

Andrew Schorr:

Well, you can see that Esther and I have been on a long journey together and just‑‑for those of you watching (? look), not always, but there are people living longer with lung cancer now.  There are people living longer with advanced prostate cancer, with advanced breast cancer.  We have a long way to go with a lot of the cancers, but we have are making progress with some of them, the blood cancers that I’ve been affected with.  Twenty‑two years ago I didn’t know I’d be there for the next month or the next year, and you’re stuck with me.  Here I am, and I hope Esther and I are going to be together for many, many years with our 33rd wedding anniversary coming up.

So then you say, well, how can I take control back from this where I started maybe feeling like a victim.  And that’s what we’re talking about here.  So this field that Dr. Subbiah talks about and now Raquel is very involved in on her end, these are relatively new and not having proliferated everywhere.  But you have the benefit here.  Take this into your life, we hope.  Have conversations with people like this or seek them out, seek the online resources.  All right.  I’m not going to preach anymore.  I just hope this program has been helpful.

I want to thank our guests.  Dr. Subbiah, thank you for being with us once again from MD Anderson and your work in integrative medicine.  Thank you so much.

Dr. Subbiah:

Absolutely.  Thank you so much for having me and this opportunity to talk with all of you.

Andrew Schorr:

Well, we’ll do it again.  And Raquel Forsgren joining us from Chicago and taking us through a guided program.  I’m going to look up those videos.  Thank you so much.

Raquel Forsgren:

Thank you.

Andrew Schorr:

Esther, here’s a big hug and kiss.  Thank you for being with us.

And one other thing is we’re going to have some resources for you that we’ll put with this program on the Patient Power website.  It will have links to all the things we’re talking about.  So be sure to look out for that.  We’ll be sending you e‑mails with alerts.  Tell others about this.  Have them sign up with Patient Power so they always are in the know as we do more programs.  And let and Esther and Tamara, our producer, know.  You can always send a comment to questions@patientpower.info.  Let us know if this was helpful.  Okay?

I want to thank the Patient Empowerment Network for this program and achieving wonderful support from Celgene and from Genentech and Helsinn and Novartis, and we really appreciate them being part of the cancer community, not just developing drugs but supporting our discussions like this one.  I’m in California.  We have our guests around the country and Esther upstairs where we live here.  I’m Andrew Schorr.  Remember, knowledge can be the best medicine of all.  Thanks for joining us.


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.

Patient Advocacy: Six Steps to Craft a Compelling Message

Patient advocacy involves sharing your unique knowledge and experience of a disease or condition with the ultimate aim of raising awareness and influencing people to create a desired change.  This might include speaking at an event, telling your story in the media, or working with an organization to develop new treatment guidelines.  This month’s post will show you the steps you should take to create a compelling message to get key issues across to your audience.

1. Develop Your Key Message

The first step is to work out the key message you want to communicate. Asking yourself the following questions will help you focus on the main issues.

  • Why do I want people to know about this condition?
  • Is very little known about the disease?
  • Are doctors not very good at diagnosing it?
  • What is the impact of the condition for me and for others?
  • What improvements are needed? Locally? Nationally? Internationally?

An effective message is credible, clear and convincing – ideally you should be able to communicate it in less than one minute – for example, “Cancer-related fatigue is poorly understood, but has been reported in 30–50% of breast cancer survivors in the first 5 years after treatment.”  The recommended approach is to have one primary message supported by two or three secondary messages. Write down your core message first. The purpose of the secondary messages is to support the core message and to explain how it can be achieved.

Insider Tip

Patient advocate and blogger, Kay Curtin (@KayCurtin1), who is a stage IV Melanoma patient, suggests taking a look at what other organisations are doing before committing “precious time and resources on replicating what’s already been done.”  Christina Lizaso (@btrfly12), co-moderator of the #gyncsm Twitter chat, agrees. “Look first to collaborate and move things forward vs. starting from scratch,” she recommends, “then think outside of the condition – what is the most important thing for someone who has never heard of it to know?”

2. Identify Your Target Audience

Deciding who your target audience is and how best to reach them is the next step. There are several broad groups you might consider, including other people with your condition, healthcare professionals, the media, legislators or the general public. Which group you focus on depends on what you are trying to achieve.  The more specific you are in identifying your audience, the more effective your message will be. To follow on from my example above, if I want the guidelines for cancer treatment to include cancer-related fatigue, I might want to target healthcare professionals, other patient organizations who are campaigning on similar issues, and organizations like the American Society of Clinical Oncology.

3. Craft Your Message

A persuasive message can be summed up in three words “Make Me Care.” Sharing your story and the stories of others affected by your condition is the most powerful and compelling way you can do this.  As Jo Taylor (@abcdiagnosis) founder of After Breast Cancer Diagnosis says, “your story is everything – it raises awareness and shows the passion behind why you are trying to make change as a patient advocate.” Jo also believes your story connects you to others with a similar story, which in turns helps to build strong networks to bring about change. Dementia advocate, Pablo Barredo (@Diario1Cuidador) points out that stories help create bonds not just with patients but with their caregivers too. “Patients and caregivers want personal stories and people who will understand them, not scientific terms they may not understand,” he says.  “They need to feel connected to someone who speaks their own language and understands them.”

Insider Tip

When sharing your story, author and breast cancer blogger, Nancy Stordahl (@NancysPoint) points out that “you have to be willing to share from your heart. Be real. Be you. It’s all about being authentic. Always come back to that. Allow others to see your vulnerabilities. When others see that you’re authentic, you’ve made it easier for them to care, not just about you, but about your message(s). Once they care they’ll want to learn more.” Antibiotic resistance campaigner, Vanessa Carter (@_FaceSA) agrees that authenticity is key. “You have to keep telling your story from the heart,” she says, “which is not easy when you’ve repeated it for so many years. It takes a lot of practice. I think it’s one of the greatest arts of advocacy.”

Be prepared that telling your story might make you feel emotional and vulnerable, so think carefully about how much you are willing to share before you make the decision to share it.  Let the audience know your boundaries. Be mindful too of boundaries if you are talking about a family member. How conformable are they with you sharing their story or aspects of your own story that may affect them? In Nancy’s words, “each person needs to find her/his own voice over time, figure out what works and feels comfortable for you, and then go with it.”

4. Create a Compelling Call-To-Action

According to the WHO, “you cannot mobilize people unless you ask them to do something. Aim to craft messages that will convince your audiences to act – rather than messages that simply communicate what you want to say.   As Christina Lizaso reminds us, “awareness is not the end goal – it should be taking you to education and to action.”

Think about what you want your listener or reader to do when you are finished telling your story? What will motivate them to act?  Outline clearly the next steps they need to take.  “Awareness should immediately be followed by an opportunity for action,” says breast cancer researcher and advocate, Jamie Holloway (@jamienholloway). While a “dramatic personal story is a more compelling ‘hook’ than just rhyming off a list of facts (no matter how alarming the facts are!),” says Carolyn Thomas (@HeartSisters), author of A Woman’s Guide To Living With Heart Disease,  “a story by itself isn’t the message.”

Insider Tip

Alison Cameron (@allyc375) feels strongly that sharing a personal story should be a starting point for action, not the end goal.  “For me, the personal story has its place yes, but is a starting not an end point, “she says. “The crucial thing is not to fall into ‘inspirational patient’ mode but to work with those listening to come up with concrete actions for change. I got very weary of being parachuted in to ‘tell my story’ then kicked out swiftly after being patted on the head and told how “inspirational” I am. What changed as a result of all that? Not a great deal.”

5. Communicate Your Message

Now that you have identified your target audience and crafted your message you need to think about how to communicate it. The most straight forward way of communicating is directly such as a face—to-face meeting, an email, or a phone call.  Plan ahead for how you will share your story.  What supporting material will make your story stronger? Can you share research data to support your key message(s)?  You don’t need to use too many facts, and detailed data – pick the data that is most relevant to your audience to help make your point; for instance, state data would be important to a state legislator, while patient outcome data would be relevant to healthcare professionals.  The WHO recommends you use facts and figures wisely – if you use too many it can overload and confuse your audience. Balance statistics with stories that convey the human cost of disease.

You should also use blogs and social media to spread your message to a wider audience. Bear in mind the content that works best on the platforms you have chosen. The continuing growth of visual platforms, such as Pinterest, Snapchat and Instagram means that creating visual content is more important than ever. There is a reason the most widely shared content nowadays is highly visual because visuals can rapidly create an emotional response and convey an idea very quickly. The type of visual assets you can create include images, videos, and infographics.

Insider Tip

Jo Taylor created her own infographic to raise awareness of the signs of secondary breast cancer. There are many tools out there which can help you create appealing images without any design skill. I’ve put together a list of free tools here which you may find useful.

6. Promote Your Message

People are more likely to believe and understand a message heard from more than one source. Promote your key message(s) through social media and encourage people to spread it through their social networks too. Research shows that 69% of people share information because it allows them to feel more involved in the world, and 84% share because it is a way to support causes or issues they care about. By making it easy for visitors to your website or blog to share your content, you increase the likelihood that they will take this action. Make sure your social sharing buttons are clearly visible on your site. This is the most obvious (though sometimes overlooked) way to encourage readers to share your content. By placing the buttons on the side or at the end of the article, people will be more inclined to share the article.

Insider Tip

Use a tool like Click to Tweet in your posts. This useful tool generates one-click tweet boxes or links that can be shared through your website, your blog, or via email, to increase social shares.

Wrapping Up

Raising awareness is the first step on the path to change. Change won’t happen right away and it will require patience and persistence. Siobhan Freeney (@breastdense) founder of Being Dense, an organization which raises awareness of breast density and its associated links to breast cancer and screening, believes “awareness is the precursor to change,” and you need “resilience, research, passion and patience” to succeed.  If success feels slow in coming, don’t lose heart.  As triple negative breast cancer blogger, Catherine Foy (@mytripleneglife) points out, “without you realizing it, your story may have given hope to someone struggling.” Even if your story hasn’t changed the world, it may, to quote Kay Curtin, “change somebody’s world.”

Notable News: June 2018

There’s a little something for everyone in the news this month. Immunotherapy looks promising for men; lung cancer does not. More women can forego chemo, and African Americans and Latinos have a new warning sign. Preventable cancers are on the rise, but your amount of alcohol consumption might help you change that. There’s a lot of news this month, and it’s all right here so you can pay attention and stay empowered.

Speaking of paying attention, African Americans and Latinos have a new pancreatic cancer warning sign. Recent findings show late-onset diabetes, after age 50, is an early sign of pancreatic cancer in African Americans and Latinos, according to this report from accessatlanta.com. The link between diabetes and pancreatic cancer is still unclear, but the study showed that African Americans were three times as likely to get pancreatic cancer after developing diabetes, and Latinos were four times as likely. While pancreatic cancer is rare, you should discuss your risk with your doctor should you get a late-onset diabetes diagnosis.

Another new report offers good news for women. New evidence shows that many women with breast cancer can forego chemotherapy as part of their treatment, reports washingtonpost.com. Findings from the federally sponsored, largest ever breast cancer trial indicate that women who have the most common type of early-stage breast cancer, with low and moderate risk of recurrence, don’t require chemo after surgery and won’t be subject to the often harmful side effects. The study previously showed that women with low-risk of recurrence didn’t need chemotherapy, but there was some question about those with moderate risk. After further study of patients with moderate risk, researchers determined that those who did not undergo chemo did as well as those who did. The type of cancer studied is hormone-driven, has not spread to the lymph nodes, and does not contain the HER2 protein. The findings affect more than 85,000 women per year and are expected to change the way early-stage breast cancer is treated. More information can be found here.

There’s also good news for some men. An early stage trial that was presented at the annual meeting of the American Society of Clinical Oncology finds that immunotherapy looks promising as a treatment for some prostate cancer patients, reports bbc.com. Unfortunately, the treatment doesn’t work for the majority of patients, with only 10 to 15 percent of patients having any response to the treatment. Researchers are hoping to determine which patients are most likely to respond. More information can be found here.

However, worldwide the news is not quite as positive. Lifestyle cancers are on the rise and increased prevention is needed, reports sciencedaily.com. Lung, colorectal, and skin cancers have all increased worldwide over the past ten years while other cancers have decreased, according to the Global Burden of Diseases (GBD) study in which researchers analyzed 29 cancers and then reported their findings based on age and sex for 195 countries and territories. Lung and colorectal cancers are the leading causes of cancer deaths worldwide despite the fact that they can be preventable with such things as dietary changes and reduction in tobacco usage. The GBD also found that the United States was the third leading country in new cases of cancer per 100,000 people in 2016. Australia and New Zealand were the first and second respectively. Syria was the lowest in both new cases of cancer and cancer deaths per 100,000 in 2016. The country with the highest rate of cancer deaths per 100,000 in 2016 was Mongolia. Here you can find the full list of cancers analyzed in the GBD and where they are most likely to occur worldwide.

In other lifestyle news, your alcohol intake may be affecting your health. Less alcohol means less cancer or death, reports livescience.com. A new study reveals that light alcohol drinkers (fewer than seven glasses per week) had a lower risk of cancer and death than those who drank more alcohol or no alcohol at all. The study combines the risks of cancer and death from other causes whereas most studies pertaining to cancer risk and alcohol don’t factor in various causes of death. The combination of the two addresses the role of alcohol in overall health. More about whether or not you should put down your wine glass can be found here.

Finally, those cancers pertaining to lifestyle are often likely to come with stigmas attached to them. While most people believe lung cancer is preventable and caused by smoking, forbes.com contributor Bonnie J. Addario offers a different perspective about the stigma of lung cancer and how it has hindered research. Smoking is not the only cause of lung cancer, Addario points out. In fact, she states, 70 percent of lung cancer patients have long-since quit smoking or never smoked at all. Lung cancer, as we learned above, is the leading cause of cancer death worldwide, and Addario notes it is the leading cause of cancer death for both men and women in the United States. Perhaps it’s time we look at lung cancer differently, as Addario advocates here. It’s worth the read.

 

ASCO 2018 Lung Cancer Roundtable

A Lung Cancer Roundtable: Takeaways from ASCO 2018

Lung cancer experts Dr. Jeffrey Crawford from Duke and Dr. Edward Kim from Levine Cancer Institute speak about key take-aways from this year’s ASCO meeting including immunotherapy updates, newly identified genes, the role of liquid biopsies and specific questions patients/care partners should be asking as the lung cancer landscape continues to evolve.


Transcript

Andrew Schorr:

Okay.  Here we go.

Hello and welcome to this Patient Empowerment Network program produced by Patient Power.  I’m Andrew Schorr from Patient Power, and we’re discussing an update from the big American Society of Clinical Oncology meeting, ASCO, and what it means for patients and family members dealing with lung cancer today.  I want to thank our financial supporters for making grants to support this program, Celgene and Pfizer.

So we have two noted experts with us.  We have Dr. Jeffrey Crawford from Duke University and the Duke Cancer Institute in Durham, North Carolina, and Dr. Edward Kim from the Levine Cancer Institute down the road also in North Carolina, in Charlotte, North Carolina.  Dr. Crawford, welcome to Patient Power and the Patient Empowerment Network.

Dr. Crawford:

Andrew, thank you.  I’m glad to be here.

Andrew Schorr:

Dr. Kim, welcome to you.

Dr. Kim:

Pleasure, Andrew.

Andrew Schorr:

Okay.  Gentlemen, let’s start.  So I walked into the ASCO exhibit hall, which is many football fields wide and long, and I was impressed with so many companies devoted to helping doctors and their patients understand the specific biology, molecular composition of the tumor that somebody might have for example with lung cancer.  Dr. Kim, is this where it’s going, is that sort of precision medicine?  And why is it so critical for patients and their doctors?

Dr. Kim:

Yeah, thanks, Andrew.  I think it’s really important to know how the new standards are changing.  We’ve been used to a lot of therapies and how we assess folks for decease such as biopsies and histological diagnoses, and now it’s not just about that.  It’s about trying to figure out what genes exist that are unique to each person’s individual tumor.  And we know that these genes are differently made up in different folks, so just to call somebody who has a non‑small cell lung cancer, and that’s the area that myself and Dr. Crawford cover, is really not the whole picture any more.

We’ve seen this in breast cancer.  We’ve just kind of come to accept it over the last couple decades, that you’re either a hormone receptor‑positive breast cancer patient or your tumor is HER2 positive or not or you’re a triple negative, and that’s means none of those markers are present.

Well, we were never that sophisticated in lung cancer, frankly, to have the equivalent of a triple negative even though we did, and we started is seeing this in the early 2000s, especially as we looked at first the mutations like EGFR and translocations like ALK and ROS1, and now that number is just really exploding as far as the number of markers that a clinician has to check just at baseline to make the proper assessment to treat a patient with non small‑cell lung cancer these days.

And that’s exciting, but it’s also daunting in that the data and the drugs and markers are changing so frequently that it’s hard to keep up, and even as an expert it’s hard.

Andrew Schorr:

Now, Dr. Crawford, you’re in research a lot as well, and so this multiplying of genes, you keep identifying new ones, right, and then it’s a matter of finding out, well, which genes are important at which time for which patient, right?

Dr. Crawford:

Correct.  As Ed was saying, it’s a complicated task, and I think we get now a lot of information.  When we do next‑generation sequencing, we get literally hundreds of genes.  Some of them are actionable, some aren’t, and really understanding which are and which aren’t and now to interpret that is becoming a field of its own.  So molecular tumor boards have started to try to dissect this at the institutional level so people can sit down with pathologists, (?) like the pathologist‑clinicians, try to work through how to move forward on an individual patient basis.

Andrew Schorr:

So, Dr. Kim, we hear about immunoncology, immunotherapy, and drugs that are being tested in many cancers to try to help the immune system be boosted, I guess, to fight the cancer.  Maybe you could explain that because there was news about that at ASCO, wasn’t there, for lung cancer?

Dr. Kim:

Yeah.  And certainly it seems like every major meeting, Andrew, has news about immunotherapy.  And the really nice part about it, speaking very selfishly, is that there has been a lot of news about immunotherapy and lung cancer, and I get to tease my melanoma colleagues, that, yeah, you know, we know it’s been around for greater than five, six years in melanoma, but it required a large scale sort of cancer to take this into the main stream.

And lung cancer is one of the largest.  It affects so many people out there, and to have these trials testing immunotherapies and these FDA indications, has really transformed things.  What we explain to people is that it’s not like the vaccine programs in the past in that the immune system is a very sort of gray area for a lot of folks.  Some people think you can take vitamins and boost your immune system.  Other people think you just have healthy living it will do it, and all those things contribute because your immune system is really like your micro environment throughout your entire body, and a lot of things affect it, and it affects a lot of things.

But what’s really cool about these newer generation drugs that are impacting the cancer process is that cancers have become smart.  They are able to build up defenses to be sort of stealth inside the body, and so even though there were bad things happening to you your body couldn’t tell that they were cancer cells versus normal cells.  And so these new checkpoint inhibitors have focused on trying to break down the stealth or the defenses that these cancer cells have been using to invade the immune system.

And so now you’re really empowering your own body’s immune system to fight the cancer.  And that’s really exciting.  The side effects, there are some but have generally been very well tolerable.  There are always a percentage of patients who can get a hyperactive immune system, and that’s usually what causes a lot of symptoms we see, but all in all‑‑you know, we use Jimmy Carter as a poster child, he’s like 150 years old, and he’s on an immunotherapy being treated for a stage 4 melanoma and doing very well.  So that’s what my patients see out there, that’s why they’re asking about it.  We have to select the right people who is appropriate.

Andrew Schorr:

Well, Dr. Crawford, let’s talk about selection.  So we’ve alluded to testing to understand what’s at work or what sort of immune levels, we hear these terms PD‑1 and PD‑L1, and they’re even mentioned on telephones commercials for lung cancer drugs.  So how do we know whether this changing world of immunotherapy applies to an individual patient?

Dr. Crawford:

Well, that’s a good question.  So I think we’re learning as we go about biomarkers for immunotherapy, but certainly the one that’s out there most notably is PD‑L1, and so that’s a marker of this protein that Dr. Kim was talking about.  It’s an immune checkpoint, so PD‑L1 when it finds the PD‑1 receptor down regulates or lowers the immune system, and that’s a natural, naturally occurring process.  It’s important so our immune system does get overly revved up, but what happens in cancers it often gets overly depressed and suppressed, so we have inhibitors, drugs that work by inhibiting that reaction that allow the immune system to emerge and attack the cancer.

So what’s really cool about this is that the immune system itself is what destroys the cancer when you take these agents.  This is not like chemotherapy or even targeted therapy where there’s a direct cytotoxic effect on the cells.  This is really enabling your immune system to take over and attack the cancer and destroy it.  So it’s remarkable when we see an x‑ray with cancer disappearing based on restoring the immune system.

So PD‑L1 is clearly an important marker because it’s the way these first‑generation immune checkpoint inhibitors work through that process.  So one would assume that the PD‑L1 measurement would be predictive of who is going to benefit and who is not.  And in some sense it is, but it’s not at all like EGFR testing, where we are pretty confident when we have an EGFR mutation we’ll have a very high response rate, while with PD‑L1 even in patients with expression above 50 percent only about half of them get a good response.

And on the other end patients with very low response, very low levels of PD‑L1, they still have a response of 8 or 10 percent.  So it’s not a perfect marker by any means, but it has been helpful in identifying patients likely to benefit.  And what’s come out of ASCO is more and more about how to select patients for immunotherapy or a combination of chemo and immunotherapy or other options.

Andrew Schorr:

Dr. Kim, let’s talk about biopsy for a minute or how you get the information from the patient as to what’s going on and then what to do about it, if you will.  So getting a lung biopsy is not easy, and I know sometimes there’s a problem getting enough tissue to do all the analysis you want, and now we’ve been hearing about more and more companies that are doing liquid biopsy.  Okay.

So here’s Mr. Jones, you want him to have a lung biopsy.  Would there also be a liquid biopsy or‑‑and not just at diagnosis but would you be doing some of this along the way to see if treatment is working?

Dr. Kim:

Yeah, we’ve always been attracted to some of the other cancers that utilize liquid tests, ovarian cancer, CA125, PSA, prostate cancer, although we’re still not really clear on where we’re supposed to be using that to screen patients, but that has given people is principle that they like to follow things.  And that’s why cholesterol, for instance, was such a powerful sort of marker even though the relevance of it has been questioned by cardiologists.  People can see there is an effect.

So, first of all, we have to say that nothing has completely replaced tissue.  That is really the gold standard.  It still is.  I tell our interventionalists, whether it’s a pulmonologist, interventional radiologist or anyone, I don’t want a diagnosis.  I want tissue.  Because they can make a diagnosis by doing some brushings or some cytology, and they can tell me it’s an adenocarcinoma favoring lung.  That is not helpful.  We need to absolutely have data that allows us to send for these molecular tests which includes, as Jeff mentioned, PD‑L1.

We need EGFR mutation, ALK, ROS1, BRAF.  These are all very important markers now that need to be sent.  And in some cases, at some centers they send for the larger panels.  What you get are 3‑ to 500 genes.  I don’t need 3‑ to 500 genes, but there are certainly clinical trials out there that can help match patients into trials based on these genes, so it is some utility.

But the blood‑based markers and the biopsies are improving.  There are definitely very‑‑there are good data that show concordance when they’re positive.  So if you do a blood test and it shows a positive mutation for EGFR, for instance, you can be pretty confident that the tissue has that as well.  The problem is that when you get a negative result.  And the negative result, those percentages aren’t disconcordant because (?) really show the amount of accuracy, and so you can’t take a negative test at face value.  We don’t standardly do liquid biopsies in patients unless the patient really has a contraindication to doing a traditional tissue biopsy.

As far as the surveillance aspect, as you mentioned, we do that on research.  So on our research studies we do follow patients at every cycle with another blood draw, in addition to what they give in labs, so it’s not an extra stick.  It’s just extra biopsy.  And we do try to follow to see if we can see some of these different mutations either go up or down based on how the treatment is working or not working.  And we’re hopeful that this type of research down the road can lead to more predictive assays that are easier to gather so we can either surveil patients to see if they have cancer, if it’s gone away, if it’s come back.

You can imagine somebody who has been treated for cancer, who has no evidence of disease on a CAT scan but maybe with blood surveillance we can get an early sign if something is coming back.  These are all possibilities and are being investigated, but right now it’s really a backup plan if tissue can’t be adequately gathered.

Andrew Schorr:

Dr. Crawford, of course you’re doing research as well.  Do you agree with this, where we are now and where we’re headed?

Dr. Crawford:

Absolutely.  I think what’s happened in lung cancer is because of this need for tumor tissue, as Dr. Kim has pointed out, it’s really transformed all the interventional things we’ve been doing.  We were moving in the 90s to smaller and smaller biopsies, smaller and smaller needle aspirations just to make a diagnosis, but now we’ve gone back the other way where we’re retraining our pulmonologists to get larger cores of tissues.  They’re developing new techniques to get more tissue, endobronchial biopsies.  CT interventional people have been enormously helpful for getting core biopsies so we get adequate tumor tissue to do the molecular tests we’ve been talking about.

So that’s really fundamentally important and important to have at every institution hospital across the country.  It’s one thing for Levine or Duke to be able to do this, but it really needs to be done in smaller community hospitals and done well by interventional people who can get the tissue we need because the samples can always be tested at a central site if the pathology labs can’t do it locally.  We have to be able to get the tumor tissue.

Andrew Schorr:

Let’s pull this together for a little bit.  I want to see if I’ve got this right.  So you’re having a revolution now in more genes being identified and trying to decide what’s actionable, whether you have approved medicines or combinations or drugs in trials, that both of you have alluded to, could for research purposes you identify something and where that could offer hope to a patient where otherwise the existing therapies might not match up.

So what actions should patients and family members be talking about?  And you said, Dr. Crawford, like at the community level or if they have a university hospital as a choice to go.  What should they be doing now because obviously anybody diagnosed with lung cancer or their family member, we want the longest life and the best chance right now, and yet you have an evolving field.  So what would‑‑Dr. Crawford, how would you counsel patients and family members so that with what you have available, either as approved therapies or in trials, could be available to them?

Dr. Crawford:

Well with, first, let me back up a second to say we’ve been talking mainly about advanced lung cancer.

Andrew Schorr:

Right.

Dr. Crawford:

So it’s important that patients get diagnosed early.  It’s important that patients who are eligible for CT screening and to go that so we can detect lung cancer at an earlier stage and hopefully offer them curable surgery, and then for them to get evaluated by a multidisciplinary team if they’re in early stages to see is surgery alone the right thing, surgery and chemotherapy, a combination with radiation, so all those standards are still present in early‑stage disease.

Now, as we may talk about, immunotherapy and targeted therapy may have a role there as well, but I think our curative strategies remain intact there.  So it’s very important to have availability of a multidisciplinary team that can really assess cancer at all stages.

For the advanced cancer patients then, what’s particularly important is for every patient to get molecularly defined tumor testing being done.  So we not only need to know the pathology, as Dr. Kim has said.  We really need to know the molecular phenotype of cancer to really make the best treatment approach for patients with advanced disease.  And in most patients that should happen before they ever talk about chemotherapy.  We need to know are there better approaches for that patient, and we’re not going to know that without these tests being done.

Andrew Schorr:

How about you, Dr. Kim?  I mean, still chemotherapy is still around, still in combination.  People understand there are side effects, not that there are not side effects with the new immunotherapies, but people would like to skip to the most effective treatment first.  So what recommendations would you have for our listeners?

Dr. Kim:

Yeah.  You know, we’re talking strictly about the advanced lung cancer patients.  The new standards in non‑small cell, both nonsquamous and squamous, now contain an immunotherapy combined with chemotherapy in markers that are lower selected or unselected.  I agree with Jeff.  You know, the biggest struggle we always want to tell our patients is be patient.  Do not let the chemotherapy start without having the results of your markers.

And that’s where sort of this new diagnosis of cancer comes in, the fear of it growing while you’re waiting a couple of weeks for the results of these markers, but we have to reassure patients it’s okay because if you just wait the extra one to two weeks.

And I understand it could take longer getting the biopsy to get enough tissue, sending it away, taking three weeks, and then your doctor, who is maybe not as sophisticated at reading these very, very, 18‑page reports, take some time to evaluate it.  It could be five weeks right there very easily, and we don’t like to wait that long.

But if you do have a marker present, and if it is‑‑and now almost 50 percent of the patients with non‑small cell have this, have a marker, maybe we’ll be able to give you something in lieu of chemotherapy that’s not a pill, single‑agent immunotherapy.  And certainly as a default now we’re seeing again new standards of care.  New standards of care are combination therapy, chemotherapy with immunotherapy based on data that’s been presented in the last couple months.

And so as a biomarker person I love seeing marker‑enriched populations receiving less therapy, but as we begin to incorporate these drugs in our standard regimens we’re seeing improvements that are undeniable and are forcing us now to readjust or new standards.

Andrew Schorr:

Dr. Crawford, so I’ve heard along the way, and I know knowledge is expanding, whether or not some of these newer approaches apply to people whether‑‑you know, whether they smoked or not, whether they had a history.  Where are we now with having the widest array of approaches for the widest array of people whether they’re smokers or not?

Oh, we lost your audio.  Go ahead.

Dr. Kim:

Am I back?

Andrew Schorr:

Yeah.

Dr. Kim:

So smoking is clearly an important factor in outcome for patients, and it’s also somewhat predictive of likelihood of different things.  We know smokers have a lower rate of EGFR and ALK translocations, mutations.  We also know that they have a higher rate of PD‑L1 expression and may be more likely to respond to some of these immunotherapies, but those are just generalized statistics.  And we have smokers who have EGFR mutations, and we have never smokers who respond beautifully to immune checkpoint therapy, so the answer is we have to do the molecular testing and sort out who has what.  Smoking may influence that frequency, but on any individual patient basis we have to have the tests to know how to best to treat them.

Andrew Schorr:

That’s good news.  So, Dr. Kim, you had referred earlier about cancer being kind of wily, if you will.  So is it possible that the molecular testing results at time of diagnosis further down the road may be different?  In other words, some other gene is driving the cancer should it come back or it’s still going, and you need a different approach.  In other words you have to change horses, if you will.

Dr. Kim:

Yeah, that’s a great point, Andrew.  You know, back in 10 years ago, almost 11 years ago when we initiated this trial while I was at MD Anderson called BATTLE, the whole principle was to rebiopsy patients once they completed or once the first line of therapy stopped working.  And for that very point you brought up is that these tumors change.  If you use a baseline tissue that’s a very different environment that that tissue was exposed to.  It has not been treated with chemotherapy, it’s not been under different stressors, and nor has it now begun growing after getting chemotherapy.

So a patient, just as you say, who has been treated maybe there was some success but then it‑‑with chemotherapy it’s always a little transient, and then now the tumor is growing despite being treated, that could be a different tumor.  It’s been shown also by the Boston group that you get transformation to small cell, of all things, in about 15 percent of patients.  And so different histologists altogether.  So who knows what will evolve out of the cancer that’s been treated that is now beginning to grow.

And so I think it’s really important to have a repeat biopsy when this occurs to help again drive the appropriate treatment.  And, as we talked about earlier, if it’s difficult sometimes a liquid biopsy can even be done at this setting if it’s difficult or the patient is has a difficult area to get tissue.

Andrew Schorr:

So, Dr. Crawford, you have lung cancer meetings throughout the year, but the ASCO meeting with like 40,000 people across all cancers from around the world, it’s a big meeting.  You’re involved in research and, of course, with existing therapies as well, how positive do you feel about change and even the rate of change to offer hope for people dealing with lung cancer today?

Dr. Crawford:

I’m as excited about lung cancer as I’ve ever been, and I’ve been doing this for quite a while.  The rate of change is, as Ed has pointed out, is dramatic.  The number of new agents that we have seen over the last year, both targeted therapies and immunotherapies, and the rate of change, it’s not just ASCO every year.  AACR, a meeting that’s normally more basic research, had major breakthrough discoveries (?) inaudible, as well I’m sure this year, and Europe will have additional new discoveries as they did last year.

So it’s really changing every few months, our guidelines through NCCN have to be changed almost monthly, and I think that’s a good thing.  It’s telling us that new knowledge is really being moved very quickly into the patient care arena.

Andrew Schorr:

Dr. Kim, so we’ve talked largely about non small‑cell lung cancer, and you’ve rattled off some of the different types.  There’s a percentage of people, smaller percentage, but people with small cell‑lung cancer.  Were there things you were hearing there at ASCO that could offer hope or in research to help this population as well?

Dr. Kim:

And certainly Jeff is the expert here.  He’s had a long career with it.  Small cell has always been that tough cancer where you get teased a little bit.  Again, if you’re fortunate enough to find someone in limited stage you can try to deliver curative intent therapy.  If they happen to be in an extensive stage it really becomes about trying to give chemotherapy that has a high response rate, and so you feel good about that, but then the difficult aspect of it is that in fact it doesn’t last forever.  And so when it does again not respond, it’s not responding, we’ve got to figure out some things.

The immunotherapies have been very widely tested, and so there are some therapies that are coming.  There are some that are approved, nivolumab, ipilimumab have been used.  They’re trying to incorporate in combination with chemotherapy with these immunotherapies.  There are some other drug classes, (? Phonetic) roba‑T and others that are being looked at very closely in small cell.  So I love the fact that there’s spillover in the small cell because it wasn’t really a high area of importance for a lot of development of drugs, which was unfortunate because we still see those patients, but it’s nice to see that there’s a lot of studies been looking at these types of drugs.

Andrew Schorr:

Okay.  Dr. Crawford, any other comment you wanted to make about small cell?

Dr. Crawford:

I would say it’s an area that’s been difficult to see advances.  Small cell presents generally at more advanced stage, so very few patients can have surgery.  Chemo and radiation can still be curative for early‑stage patients with lymph node involvement who don’t have distant disease, but in the advanced stage setting we’ve been using the same chemotherapy for 20 years.  Our supportive care has gotten better, we’ve made some advances, but we’re hoping immune therapy and others will make a difference.

It’s kind of interesting.  Small cell, you would think, since it’s prevalent largely in smokers, people with smoking exposure, could be very‑‑a lot of mutations being present.  We know that total mutation burden is a nice predictor of benefit in non small‑cell lung cancer, so we think that would‑‑might play out here.  There is PD‑L1 expression in small cell but it’s not as intense.  And there is some separation by PD‑L1 score of benefit for immune checkpoint therapy in small cell, but the responses in general are less than they have been in non‑small cell.  So we’re going to need more, more homework to figure this one out, but I think we’re taking some steps in the right direction.

And as Dr. Kim pointed out, roba‑T is a targeted therapy, maybe one of the first targeted therapies we’ve had in small cell that attacks antigen present on a lot of small cell called (?) B L L 3, and there are other therapies being developed against that B L L 3 because we know that’s an important marker.  So I hope we will see agents that are truly targeted therapies in small cell in the next few years.

Andrew Schorr:

Okay.  So I think as we pull this together, and I think you were rattling off some acronyms, and that’s sort of what we’ve been seeing a lot in lung cancer now.  We’ve talked about EGFR and ALK and ROS1, and we talked about also PD‑L1.  So I know for patients it can be confusing, but look back, review this program with Dr. Crawford and Dr. Kim were saying about if you have someone diagnosed with advanced lung cancer to get that molecular test (? Inaudible) and make sure that the experts like this in your major center like this, that they have the information.  And then if you need to (? Inaudible) you may get (? Inaudible).  So (? Inaudible) but there’s help in second opinions from people like this.  Dr. Crawford, did I get it right?

Dr. Crawford:

I think you did.  You’re a good student.

Andrew Schorr:

Okay.  All right.  Well, we have two professors with us, Dr. Edward Kim from the Levine Cancer Institute in Charlotte, North Carolina, my old home down, and Dr. Jeffrey Crawford from Durham and Duke University.  I’ll say that even though I went to the University of North Carolina eight miles down the road.

Dr. Kim:

You had to say that.

Andrew Schorr:

Yeah.  Thank you.  Thank you both for your work in treating patients and in researching, helping give us a window into this ASCO conference, but I get the sense you‑‑you said it, Dr. Crawford‑‑you’re having meetings every couple of months and talking to your peers all the time, and this is a faster changing field.  Thank god, right?  So thank you so much.  Dr. Crawford from Duke, thank you so much for being with us.

Dr. Crawford:

Andrew, thank you so much and thanks to all the patients who are joining in today.  It’s for you we do all that.

Andrew Schorr:

Yeah, thank you.  And Dr. Kim, thanks.  I interviewed you years ago, and you were at MD Anderson.  Now you’re in Charlotte and you have a wonderful program there.  Thank you for being with us.

Dr. Kim:

Thank you, Andrew.  It’s our pleasure, and again, we’re just as excited as the patients because we get to offer them these really cool therapies and research studies.

Andrew Schorr:

Right.  Okay.  All right.  All the best to our patients and family members watching.  For the Patient Empowerment Network, I’m Andrew Schorr from Patient Power.  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.

Get Moving: Exercising with Limited Mobility

Over 53 million American adults live with some type of disability. However, one in eight live with the most common form of disability which is limited mobility. This is where a person experiences severe difficulty with climbing stairs or walking. If your mobility is severely restricted, exercising may be something you have come to think of as impossible. But exercise can be performed by anyone, including individuals with limited mobility.

Anyone can benefit from exercise

People who experience problems with their joints, issues with their weight, or a serious injury or illness can enjoy the benefits of carrying out regular physical activity. In fact along with the physical benefits, exercise can also help depression, reduce stress and anxiety, boost energy, and improve your sex life and quality of sleep.

Exercise improves cognitive function

Research has shown that there is a significant link between the body and mind when it comes to preventing memory loss. People who get regular exercise reduce their risk of experiencing a drop in their mental function in their later life. This also includes a reduced risk of developing Alzheimer’s or dementia.

You need to get your body moving to help keep your body and brain healthy. But while the challenges caused by restricted mobility may be unavoidable, you should still be able to find an enjoyable and rewarding way to be physically active.

Flexibility exercises

Stretching exercises like yoga are an ideal way to help prevent injury, improve your range of motion and reduce pain and stiffness. Even with very limited mobility in your legs, you can still enjoy the benefits gained from stretches and flexibility exercises. These can significantly help delay or even prevent further muscle atrophy.

Cardiovascular exercises

These exercises will increase your strength and endurance while raising your heart rate. Cycling on an exercise bike, walking, playing tennis or even dancing are great cardiovascular exercises. If your mobility is severely limited then how about swimming and water aerobics? The water will support your body while reducing the risk of any joint or muscle discomfort. It can also feel wonderfully relaxing too.

Strength training exercises

Strength training exercises use resistance such as weights to help you build muscle while also increasing your bone mass. Strength training is also important in helping to improve your balance, crucial in helping to prevent falls. If you have restricted use of your legs, then instead focus on developing your upper body strength. However, if you have issues with your upper body, then focus more on strength training your abs and legs.

Regular exercise may not feel like a priority when your mobility is restricted. However, instead of focusing on your physical limitations, concentrate on finding rewarding fitness activities that you will enjoy. It may feel a challenge to start with, but it will get easier the more you do it and you will feel the physical and emotional benefits in no time.

Patient Profile: Peter Blaze Corcoran

Patient Profile

Peter Blaze Corcoran

June is National Men’s Health Month. This month’s patient profile emphasizes the importance of continuing to explore options for maintaining optimum health after diagnosis, treatment, and recovery.

Peter Blaze Corcoran concedes that there is never a good time to get a stage four cancer diagnosis, but he says his diagnosis came at a time in his life when he felt secure in managing it. It was 2015 and he was a university professor nearing retirement. He had insurance, a supportive employer, and access to excellent medical care. “It came at a time when I was mature enough, secure enough, and knowledgeable enough,” says Peter. “I felt quite stable in dealing with it.” It was prostate cancer, a particularly aggressive form that was not confined to the prostate. Treatment required a radical prostatectomy and several months of radiation. During treatment doctor’s discovered a second cancer, liposarcoma, but fortunately it is non-threatening to date.

During his treatment, Peter was able to continue working part time which he says helped with his recovery. “It was a bit of a life line being able to work during treatment,” he says. “Work is so central to one’s identity.” The diversion of work meant Peter was able to maintain his pre-diagnosis identity. “I was not a cancer patient, but a professor who was still writing and administering.” It was important to him to maintain that persona because his goal was to return to the classroom, finish his career, and to be able to “go out on top” rather than retire early due to cancer. “The goal was to get back in the classroom, to teach again, and do another book and be involved in the university,” he says. “Which I was blessed to do.”

Peter retired this year and while he does have some health difficulties as a result of his cancer and treatment, he now hasno evidence of disease (NED). He also has some other lasting effects from his experience. “I think I’m on a different path than I would have been without the cancer,” he says. “Cancer is an effective teacher.” Peter says he hopes he has learned to be more compassionate, empathetic, and more humble, and that he has developed a deeper gratitude for life. Cancer has been a source of spiritual development for Peter and he says it has brought him into what he calls a sacred space. “A diagnosis this serious is a wake up call to deeper questions.” says Peter who used his experience as a means to address life’s bigger questions, including questions about his own mortality and about the amount of suffering in the world. He also tackled the “why me” and “will it come back” questions, and in the answers he found what he calls a turning point. “I wanted to craft a life that diminishes the chance for cancer to return,” he says.

To do that, Peter turned to the Commonweal Cancer Help Program (CCHP). The program is a week long retreat for cancer patients in Bolinas, California. Patients can attend the retreat at any stage of their illness, but must be under a doctor’s care and able to care for themselves during the remote retreat. Each retreat is open to 8 or 9 participants at a time and focuses on integrative healing techniques. Peter says treatments include music, art therapy, qi gong, individual and group therapy, traditional Chinese medicine, massage, exercise, and nutrition. “Commonweal helps you integrate treatments and the importance of good nutrition,” he says. Patients develop a practice of intentional healing and Peter says it is a great opportunity for insight into your own cancer. While the program is expensive, Peter says there is a scholarship program. “Many people who’ve been there have made it possible for others to go,” he says. While Peter recognizes that Commonweal’s broad-minded approach may not be in some people’s comfort zone, he says that one of the lessons he learned from having cancer was to say yes to all forms of healing. He says that he had the best of western medicine and he’s grateful for that, but that he continues to be open to a variety of modalities and methodologies that can help him. “What distinguishes Commonweal is that they have analyzed and studied all methodologies that have helped people,” he says. “I feel as though it’s really helped me make a turn for the better in my life.” Peter adds that the program empowers patients to care of themselves. “You set your intention,” he says. “The power comes from setting your intention.”

A career educator, Peter moves forward with the intention of teaching others the lessons he’s learned. He’s very thoughtful about what he wants to share and he emphasizes the importance of his faith community to him and how comforting it was to him to know that people were praying for him and his healing. “My faith community was extraordinarily important in my recovery,” he says and credits being open to the power of prayer in his healing process. Peter encourages others to be open to a variety of healing, too. “It’s good to say yes and stay open to all possible ways of healing whether it takes you out of your comfort zone or not,” he says. Another thing Peter says to say yes to is a buddy. “It’s important to have a cancer buddy,” he says. Find someone who has been through cancer and can give you advice and can help you through the process. He credits his cancer buddy for helping him to be open to the opportunities that cancer might bring. She told him that if anyone should ever mention the word cancer to him, he should stop and pay attention. “Listen for the opportunity to help others,” he says.

You can learn more about the Commonweal Cancer Help Program at commonweal.org.

Men’s Health Month: 4 Healthy Ways To Get Ready For Summer

National Men’s Health month is right before the start of summer. The start of a new season is a great time to make changes and do the little things that can really make a difference in your life. Often these tweaks are very minor, but the reward can be life saving. Men typically have a hard time getting to the doctors, even when they have a serious condition. Up to 60% of men will avoid seeking medical attention. With that being said, the goal should be to promote general well being and prevention for any kind of issue before it starts!

Eat Your Vegetables

The easiest way to make changes for your body is to switch up your diet, that starts with eating more vegetables! No matter how you get them (smoothies, salads, juice), it is best to try to have 2.5 cups a day. Broccoli is packed with antioxidants that helps to fight prostate cancer and is loaded with vitamin K, Fiber, Potassium. According to HealthyEating.Org, “As if that’s not enough, a cup of cooked broccoli offers as much vitamin C as an orange, and is a good source of beta-carotene. Broccoli contains vitamins B1, B2, B3, B6, iron, magnesium, potassium, and zinc too. It also provides fiber and is low in calories.”

Catch Some ZZZ’s

On average, men need at least 7-9 hours of sleep to be at their best. Lack of sleep can lead to many chronic diseases and conditions. From diabetes to cardiovascular disease, sleep is nothing to sleep on. Setting your alarm back one hour has so many benefits. When you have more sleep, you are able to manage your weight better. When you are exhausted you will look for other sources of energy, typically through food. This can cause an overload of calories. A good mattress can make a big difference as well. Sleepholic says, “The ideal mattress is often medium-firm memory foam, latex, or coil spring to ensure you are well supported. At the same time, the ideal mattress provides enough cushion and plush to feel soft and comfortable to your body parts depending on personal factors such as weight, sleeping style and position, and so on.”

R-E-L-A-X

Mental health is not a topic that men often discuss, however it is extremely important. Mind and body go hand and hand. Between pressure at work, financial struggles, and relationship issues, stress can cause really impact a person in a negative way. Headspace is an app that offers short meditations, anywhere from five to twenty minutes that help to lower anxiety, decrease stress, and promote mindfulness. Depending on whatever you are going through, there are meditations for just about everything. In only a fraction of time, you will be able to improve focus and feel better about yourself.

Don’t Shy Away

Being intimate with your partner is very important as well. It helps to release stress, sleep better, and lower the chances of prostate cancer. As men age, performance can become an issue at times. Many different reasons come into play, from medications to stress, the inability to execute can be difficult. Hims offers an interesting way to combat this issue. You are able to connect with online physicians, who after answering a few questions will discreetly send you product. It helps to relax blood vessels and encourage blood throw throughout the body. You will be feeling more confident and satisfied.

All in all, even though men tend to put their health concerns to the side, now is more important than ever. Make small changes, which will in return have a big impact. You only have one body and it is up to you to take care of it!

MedHelp

MedHelp is an online health community that uses technology, data science, and expertise in consumer health behavior to deliver outcomes at mass scale. They help guide people through every step of their health journey and helps them achieve the results they seek.

With MedHelp, you are able to achieve the following:

  • Connect with others just like you to get advice and share your experiences
  • Track your health condition and easily share data with doctors and caregivers
  • Learn from people who have your condition by reading articles and blogs.
  • Ask questions from doctors via a Q&A forum