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A Woman’s Guide to Living with Heart Disease

It’s my great pleasure this month to interview Carolyn Thomas, journalist, blogger and heart health advocate. Her popular Heart Sisters blog was recently turned into a book, A Woman’s Guide to Living with Heart Disease. As a heart attack survivor Carolyn is on a mission to educate women about their heart health.

Hi Carolyn, can you tell us a little more about why and how you decided to create your blog Heart Sisters?

C.T. I launched Heart Sisters in 2009 as a static 3-page site for local individuals and groups wanting to book my presentations about women’s heart health. I had no clue that anybody outside of my hometown of Victoria here on the west coast of Canada would ever read it.  At the time, I’d recently graduated from the WomenHeart Science & Leadership Symposium for Women with Heart Disease at the prestigious Mayo Clinic, and I was very busy sharing what I’d learned during my Mayo training at these local presentations. I called these weekly talks my “Pinot & Prevention” events (booked at least three months in advance!) A reviewer at the time described my talks as “part cardiology boot camp, and part stand-up comedy!” I felt overwhelmed by the response, and I was also a heart patient living with ongoing cardiac issues! But there clearly seemed to be growing public interest in this topic! I started the blog using a free WordPress template mostly to share info about how to book one of my talks so I wouldn’t have to spend so much time on the phone! A few months in, it struck me that perhaps I should add some meaningful value-added content too, covering some of the more popular questions women were asking me during my heart presentations.  And here we are now, eight years and over 700 blog articles later, with over 12 million views from 190 countries!

That’s impressive! What do you think are some of the benefits for patients who blog?   

C.T. I suspect that many patients who start a blog do so for its therapeutic value. I’ve seen you describe it as “writing to heal”. We’re trying to somehow make sense out of a life-altering diagnosis that makes no sense. It’s also been said that when something terrible happens, the only good that can come of it is if you’re able to make things better for others because of it. And I love the remarkable sense of community that can emerge over time between my blog readers and me, and (even better!) between each other!  When I wrote in 2015 about the birth of my first grandbaby (our darling Everly Rose), I was moved to tears by comments coming in from so many women I’d never met, who were so happy sharing in my own joy.

Not everyone is comfortable with the term “survivor” to describe their experience. I’m curious to know what you think. Is there a “survivor mentality and/or personality”?

C.T.  Sometimes people who are introducing me at a conference or at an after-dinner presentation ask if I mind being referred to as a “survivor”. Considering the alternative, I don’t mind at all. I did survive. I survived being misdiagnosed in mid-heart attack and sent home from Emergency. I survived what doctors still call the “widow maker” heart attack (notice they don’t call it the “WIDOWER maker” when it happens to women like me!)  I survived what many do not.  But I didn’t survive it because I thought positive thoughts or had a better attitude than those who didn’t survive what I did.

We hear about the Survivor mentality (good) when it’s typically contrasted with the Victim mentality (bad). This makes some sense when we’re talking about human resilience, but honestly, there are few things less motivating or inspirational to me than listening to some chirpy survivor brag about doing triathlons or climbing mountains despite having survived ______ (insert horrific medical diagnosis/procedure here) while everybody applauds his/her spunk and winning attitude. Nobody supports wallowing in self-pitying victimhood, but the distressing implication when believing in a survivor mentality is that if only those poor unfortunates who died of the same horrific diagnosis had somehow tried more, been braver, worked harder, thought happier thoughts, etc., well, they might still be alive today. Heart disease last year killed about six times more women than breast cancer did – and those women who died (some of whom were my friends from our Mayo class of 2008) are no less brave than those, like me, who have been lucky enough to survive. So far.

Do you see any commonality in the experience of surviving a heart attack when you read cancer survivorship blogs?

C.T. I can’t speak for all survivorship blogs, of course, but I can say that the sense of not being the only one feeling this way can be a huge relief when we read somebody else describe what we’ve been going through, too –  especially for those I like to call the ‘freshly-diagnosed”.  One of my blog readers left a comment, for example, that simply asked: “Oh my God! Are you ME?”  Another important theme is that many patients facing a catastrophic diagnosis – no matter what that diagnosis might be – are suffering a sudden and profound loss of self, complete with an awful sense that my old self, who I was and how I identified myself in this life, has somehow crumbled away, but leaving nothing in its place to replace it yet –  that stark Before Diagnosis and After Diagnosis difference. I once described it as being like taking a trip to a foreign country we never, ever wanted to visit.

I agree with you – that sense of not feeling so alone in our illness is powerful. Do you think that the reach of our blogs can extend further, perhaps even influence the practice of healthcare?

C.T. I sure hope so!  For example, I’m a person who likes evidence, so both my Heart Sisters blog articles and my book contain detailed medical journal references to support research that I mention. I think it’s one of the reasons that Johns Hopkins University Press first asked me in 2015 to write a book for them based on my blog articles. I’m not a physician, but I include hundreds of citations in my book so that the women who show these to their physicians can feel comfortable sharing science-based medicine – not woo-woo snake oil.

I also have a couple of pet peeves I love to write (and rant!) about:

  1. the shockingly low rates of doctor referrals of eligible heart patients to life-saving cardiac rehabilitation programs
  2. the alarming failure of our healthcare system to implement mandatory reporting of diagnostic error

My fondest hope is that if I keep ranting about these two areas, and quoting every emerging study that validates the rant, someday both of these appalling situations will be finally addressed.

But I must tell you that one striking example I’m aware of on how my blog has influenced medical practice is a comment I received from a senior American paramedic who teaches emergency medicine to trainees. When I wrote a blog article about how women heart patients are treated differently in the back of the ambulance en route to hospital compared to their male counterparts experiencing identical symptoms, he wrote to me: “Carolyn, this stops today. With me! No more!” adding that his teaching curriculum would be immediately changed to reflect the study findings I’d written about. Something I wrote hit home for this man, who happened to be in a position to influence the education of future care providers. Wow!

Wow that’s incredible. It makes me so happy to know that there are health professionals out there who are paying attention to what we have to say online. I would also hope that in reading patient blogs they would come to a better understanding of the psycho-social aspects of serious illness. Do you think health professionals often ignore those aspects of illness which lie outside of the physical?

Yes. Next question?

Seriously, some physicians (particularly specialists) seem to forget that there is a whole entire person attached to the organ they happen to be focused on. As cardiologist Dr. Sharonne Hayes, founder of the Mayo Women’s Heart Clinic, once explained: “Cardiologists may not feel comfortable with touchy-feely stuff. They want to treat lipids and chest pain. And most are not trained to cope with mental health issues.” I wrote a lot about this reality in my book, starting with wishing that I’d know before hospital discharge that post-heart attack depression is not only common, but also temporary and treatable. Mental health researchers call this ‘situational depression’. But not one person in that hospital – no doctor, no nurse, no janitor – nobody had warned me about the emotional and psychological fallout of such a life-altering medical crisis. It was five long months later when I showed up at Mayo Clinic that I finally learned that up to 65% of women with heart disease experience debilitating mental health symptoms after hospital discharge, yet only 10% are appropriately identified and treated.

That’s a sobering statistic. I believe we need to address these issues right at the point of diagnosis. What advice would you give to someone who is newly diagnosed with a serious illness?

C.W. That’s a frightening and surreal time for most of us. Let me quote my Alaska friend, Dr. Stephen Parker, who is both a cardiac psychologist and a survivor of multiple heart attacks himself, who says it beautifully when he talks about the “swirling emotions” that surround the freshly-diagnosed:

    • relief at survival
    • disbelief and anger that it happened
    • grief for everything that was and will be lost
    • gratitude to those who helped
    • extreme vulnerability in a previously safe world
    • fear of what the future might bring

So much depends on the diagnosis, the prognosis, the treatment plan, and the patient’s support community (if any). It can take a while for protective denial to wear thin so that we can begin to grasp, little by little, what is actually happening to us. It can feel like a roller coaster of ups and downs (mostly downs) in the early days. What I tell my own readers is this: your only job now is to become the world expert in your unique diagnosis. Knowledge truly is power, especially for women. And also – go outdoors. Spend as much time as you possibly can walking in nature. This won’t change your diagnosis at all, but you’ll be breathing fresh air and feeling the wind on your face.

We both share a low tolerance for certain metaphors used to describe illness. What are some of the metaphors you dislike the most? Do you think the language we choose to describe illness is important?

Thanks for asking about this. Language IS important!  In cardiology, for example, doctors talk blithely about the condition they call “heart failure” – as if they are utterly unaware how devastating those words can feel to a patient who hears them. Your heart is FAILING. Many  report that they feel unsure if they can even walk to the car after that. Doctors will also refer to patients who “failed” their treadmill stress test” or “failed the medication protocol”. Doctors use combat metaphors (“battling cancer” or “she’s a fighter”) which can make patients whose conditions decline feel like they’re clearly not fighting hard enough, or are somehow doing this wrong.

Do you think that patients sometimes don’t challenge their doctors because they fear they risk being labelled difficult? What advice would you give them and the healthcare professionals who treat them?

C.T. I believe this fear of being labelled a “difficult” patient is an overwhelming reality for far too many patients, and especially for women who have been socialized to be nice, to not make a fuss, to put the needs of others ahead of our own.  I like to quote landmark research published in the journal Health Affairs on this very subject.(1) This study was on how patients approach shared doctor-patient decision-making; the participants studied were wealthy, highly-educated residents of Palo Alto, the centre of Silicon Valley and home to the prestigious Stanford University. Yet the astonishing conclusion from researchers was the “fear of being categorized as ‘difficult’ prevents patients from participating more fully in their own health care.” Yes, even wealthy, educated, capable confident types!  And we are wise to avoid being seen as “difficult”. It turns out that another study last year suggested that diagnostic error rates actually go up if your doctor considers you to be “difficult”.(2)

How to get past this reluctance? I like to ask my Heart-Smart Women presentation audiences to guess what I would have done had it been my daughter or my sister or any other woman I love experiencing the same cardiac symptoms I was having? Like me, they agree that they’d be screaming blue murder to get the help this other person deserved, with no thought whatsoever of being labelled as “difficult”. We need to be as strong and as diligent about getting help for our own medical needs as we’d be if we were trying to get help for our loved ones.

Finally Carolyn, your blog has captured hearts and minds across the globe – and now it has been turned into a book! Do you have any advice for any of our readers who might like to turn their own blog into a book?

C.T. I’d never even dreamed of writing a book based on my blog – right up until I was approached in September of 2015 by the Executive Editor of Johns Hopkins University Press (JHUP – the oldest academic publisher in North America!) who asked me out of the blue if I’d consider writing a book with them based on my blog articles. One of the many follow-up conversations I had with her over the next few weeks included this question: “Why would anybody buy a book when they could get most of the content for free by visiting my blog?”  That’s a good question for bloggers to ask themselves about their own project. I know a number of bloggers who have self-published their own blog-turned-book. There are pros and cons of each option: self-publishing vs. being published by an established traditional publisher. One thing I felt strongly about was that, even though my book is based on excerpts from hundreds of my original blog articles, I needed a very clear 10-chapter table of contents outline that carefully outlined the specific focus of each unique chapter.

What you don’t want to see is a series of disjointed chunks of your blog that look like they’ve been lifted willy-nilly and then tossed together like yesterday’s salad. Prepare to write lots of new transition sentences/paragraphs that will seamlessly link otherwise separate excerpts. This is much harder than you’d imagine! Also, as another blogger-turned-author Alice Callahan told me about writing her own book based on her “Science of Mom” blog: Don’t lose the unique ‘voice’ that you use in your blog writing.

Thank you Carolyn for taking the time to share your experience with our readers. It’s been a pleasure to interview you and learn from your story.

About The Book

A Woman’s Guide to Living with Heart Disease by Carolyn Thomas is published by Johns Hopkins University Press. It’s available in paperback, hard cover and eBook formats. Readers can save 20% off the list price by using the code HTWN when ordering directly from JHUP: https://jhupbooks.press.jhu.edu/content/womans-guide-living-heart-disease


Refs

  • Authoritarian Physicians And Patients’ Fear Of Being Labeled ‘Difficult’ Among Key Obstacles To Shared Decision Making. Dominick L. Frosch et al. doi: 10.1377/hlthaff.2011.0576 Health Affairs. May 2012; vol. 31 no. 5 1030-1038.
  • Do patients’ disruptive behaviours influence the accuracy of a doctor’s diagnosis? A randomised experiment. S. Mamede et al. BMJ Qual Saf doi:10.1136/bmjqs-2015-00410. Online March 7, 2016.

Lung Cancer Clinical Trial Awareness

Interview with Jennifer C. King, PhD, Director, Science and Research, Lung Cancer Alliance

 

Jennifer King

Jennifer King

The Lung Cancer Alliance (LCA) is the oldest and leading non-profit organization dedicated to saving lives and advancing research in the field of lung cancer. LCA advocates for research funding and reimbursement to patients for treatment for lung cancer. They offer nationwide educational campaigns to educate and support lung cancer patients, families and caregivers. LCA’s website contains a great deal of information about the biology of lung cancer, types of lung cancer, lung cancer research, lung cancer treatments including managing side effects, clinical trials for lung cancer and treatment centers.lung cancer helpline

LCA also offers a great deal of support for lung cancer patients and families. They have a HelpLine, a “Phone Buddy” program, a “Guides” program for families and caregivers and a “LCA Unite” mobile app for iPhone and Android:  that helps connect patients to one another, offers 24/7 support via live chat and offers local resources, including support groups and treatment centers.

Jennifer C. King, PhD is the Director of Science and Research for the Lung Cancer Alliance. Jennifer is responsible for leading scientific and research initiatives that improve the lives of lung cancer patients and those at risk for lung cancer

I talked with Jennifer about her role at LCA and what her perspectives were on clinical trial awareness and patient participation.

Jennifer explained that LCA is focused on patient support, information and referral services for lung cancer patients and caregivers. Located in Washington DC, they work with policy-makers to help promote awareness and increase survivorship for lung cancer. Jennifer is working on increasing the LCA research portfolio, building an in-house research staff, partnering with other organizations and the LCA Screening Centers of Excellence. Historically, LCA has not funded research directly but has worked extensively with other organizations to that end, including the development of the first ever Lung Cancer Research Program within the Department of Defense.

LCA currently offers patients information on finding clinical trials by working with the Lung Cancer Clinical Trial Matching Service powered by EmergingMed. This service allows patients to work with a Clinical Trial Navigator who creates a list of appropriate trials and then emails or mails them directly to the patient.

LCA also offers information on clinical trials and questions to ask when considering a clinical trial. They also have a brochure, Understanding Lung Cancer Clinical Trials that can be printed or downloaded.

I asked Jennifer how patients and patient advocacy groups can do their part to help promote awareness about clinical trials and she replied, “Talk about it! Everyone needs to be talking about it and helping to spread the word. Patients need to talk about trials with their medical team early in their treatment discussions. Providers need to offer trials to patients. Patients need to know what questions to ask. Doctors need to have the information to answer patient questions.”

Jennifer emphasized that caregivers are a critical audience. She added, “Caregivers are often the ones going online and doing the research.” These caregivers need support and information also. Patient advocacy groups need to include them actively in the discussion and offer them the information they need.

I asked Jennifer what information, support or program she thought was the most effective in succeeding in increasing patient awareness in trials. King answered that it was critical to have diverse programs and types of support and information in order to reach different groups of people. “There are many different demographics within the lung cancer patient population. It takes a lot of different programs to reach everyone. So many of our programs interplay with each other and having different ways to reach different audiences is really critical.”

If you are a lung cancer patient or the caregiver, family member or loved one of a lung cancer patient, please visit the Lung Cancer Alliance website. They have a great deal of useful and helpful information available. And please reach out to those in your lung cancer community who are not so tech-savvy and help them, so that they can take advantage of all the resources available. Less tech-savvy patients and caregivers are also encouraged to call LCA’s HelpLine where they can speak to someone directly who can answer questions and provide support.

Clinical Trials

 

 

Lung Leavin’ Day

Interview With Cameron Von St James, husband of Heather Von St James, survivor advocate for the Mesothelioma Cancer Alliance and founder of Lung Leavin’ Day

Cameron and Heather Von St James with their daughter

Cameron and Heather Von St James with their daughter

Kara:

Describe what Lung Leavin’ Day means to you.

Cameron:

Lung Leavin’ Day is a special holiday for my family. It is a time where friends, family, and mesothelioma community members can all gather at our home- and connect and share our fears and overcome them together.

Kara:

Why did you decide to create this “holiday”?

Cameron:

Lung Leavin’ Day is a tradition that my family started after my wife Heather was about to undergo a highly invasive and risky surgery as treatment for her mesothelioma cancer. Mesothelioma is a cancer, known to be caused by exposure to asbestos. Taking from the tradition of firewalking- we write our fears on a plate and smash them into a fire. The day is about celebrating overcoming fear, feeling a sense of strength and hope when you need it most, and celebrating Heather’s survival!

Kara:

When your wife was first diagnosed, how did you offer her support?

Cameron:

When Heather was first diagnosed, we were both in a state of shock, and confusion. Wasn’t this a disease that old men got? How could she only have 15 months to live? She is a young and seemingly healthy woman. After Heather’s treatment, I unfortunately had to return to work in order to support our family. So Heather stayed with her parents in South Dakota, while I was in Minnesota working. That was a hard time on us because I had to be a caregiver from a distance. I couldn’t see her everyday, and that was really hard.

Kara:

What do you think are ways caregivers can help cancer patients feel more confident and empowered?

Cameron:

Focusing on the things that you can control is really important. During a patient’s cancer experience they may feel helpless, like there is nothing they can do that is within their power. That is not true, and as a caregiver to be able to contribute positively to their sense of confidence can play a huge role in helping them maintain a positive mental attitude. Showing personal strength and fortitude during adverse times can be contagious, and reminding them that they are loved, and appreciated regardless of their cancer experience.

Kara:

What have you learned from this experience?

Cameron:

That anyone can have mesothelioma. The disease is commonly thought of as an “old man” disease. But there are many people out there like Heather, who were exposed as a child. Heather would wear her father’s work jacket as a young girl to do outside chores, and unknowingly, that jacket was covered in asbestos fibers. There are 60 countries around the world that have banned asbestos, and the U.S. and Canada have not. Anyone could be at risk until there is a global ban on asbestos.

Kara:

What advice would you give to other caregivers whose loved ones have been diagnosed with cancer?

Cameron:

As caregiver, it is really easy to neglect yourself. Don’t neglect your own social and physically wellbeing. If you yourself are not 10 years FBready to fight this, then you have nothing that you can give to the fight. Actively remind yourself to take time for you. Caregivers need care too. Stay organized. Their cancer experience is going to become yours to bear as well, so you have to learn to balance their treatment, symptoms, appointments, and all of that with your own life. When people ask how they can help, if you are organized, you will have specific things that they can help with. Give them the opportunity to be involved in a productive way.

Kara:

What were your thoughts when your wife’s doctor recommended an experimental procedure?

Cameron:

Heather and I were presented with three treatment options based on her diagnosis. If we chose to do nothing, she was expected to live 15 months. If she chose the route of chemotherapy and radiation treatment, she was expected live for 5 years. But there was a third option. It was clearly the riskiest, but it had the potential for her to survive this. The treatment involved a surgical procedure called an Extrapleural Pneumonectomy with Dr. David Sugarbaker at the Brigham and Women’s Hospital in Boston. The surgery involves removing her left lung, pericardium, diaphragm and pleura. There really wasn’t much of a choice between the 3 options, we had a newborn at home, Heather and I knew we needed to get to Boston, and beat this cancer.

Kara:

Did you ever seek a second opinion?

Cameron:

Luckily Heather’s doctor never wrote off her symptoms as something postpartum, and really listened to her concerns. She was referred to Dr. Sugarbaker, a world-renowned thoracic surgeon. We knew we were in the hands of the best care possible. Heather continues to see Dr. Sugarbaker every 6 months today.

Kara:

What do you hope will come from spreading awareness about Lung Leavin’ Day?

Cameron:

We want to provide hope to those going through something similar in their life. Everyone has a battle to fight, and Heather and I want people to know that you are not alone, and you shouldn’t be ashamed or paralyzed by your fear. Once you acknowledge them- whether it is writing them down, or sharing them with someone, you are one step closer to overcoming them.

#ASH15 Interview with CLL Expert Dr. Jeff Sharman

Interview With Dr. Jeff Sharman, MD, Medical Oncologist, Willamette Valley Cancer Institute and Research Center Medical Director, Hematology Research, The US Oncology Network

In an exclusive interview at the 2015 American Society of Hematology (ASH) meeting, Dr. Jeff Sharman discusses the latest news on CLL treatment options for patients. Ibrutinib, a BTK inhibitor is discussed as a possible frontline treatment – the Resonate Study is mentioned. In a randomized phase 3 study, they were surprised at how well patients did on Ibrtinib monotherapy, which should lead to FDA approval. Dr. Sharman also talks about ABT-199, a BCL-2 inhibitor currently in clinical trials and the challenges that face treatment with these powerful drugs. Combination therapy and monotherapy are discussed, as are side effects and costs of therapy to the patient.

Dr. Sharman is hopeful about CLL treatment and closes with the statement, “Our patients with CLL, with rare exceptions, are going to be living much more normal lives than their counterparts just several years ago.” As always, knowledge is power. Having an active dialogue with your medical team will give you confidence and hope for whatever your CLL situation is.

Jeff Sharman, MD, Medical Researcher at US Oncology Network, Discusses CLL News for Patients from Patient Empowerment Network on Vimeo.

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Andrew Schorr:

Hello. Andrew Schorr on location at the ASH meeting, American Society of Hematology, in Orlando. I’m with Dr. Jeff Sharman, a noted CLL expert and with US Oncology Network and also based in Oregon. Thank you so much for being with us, Jeff. Let’s talk about CLL news, okay? So we’ve had really some novel agents, and one of them, ibrutinib, has been followed. It’s been a big deal for people, but we’re trying to decide and study whether it has application earlier, so there was some news about that, right?

Dr. Sharman:

Yes. So reporting today will be the randomized RESONATE 2 study, which compares the efficacy of ibrutinib versus chlorambucil. Now, chlorambucil is hopefully never going to be studied again as a control arm in a study. This should‑‑

Andrew Schorr:

It’s an old medicine.

Dr. Sharman:

It’s an old medicine, and I think that now with the results of this study and a prior study with the addition of obinutuzumab, or Gazyva, we’ve now shown two studies with not only superiority in terms of progression‑free survival but both of these now report overall survival benefits compared to chlorambucil monotherapy. So as of today chlorambucil, done, no more.

Andrew Schorr:

Dead.

Dr. Sharman:

Yeah. And it has been fading in North America for quite some time. But in terms of the results of this study, this was a randomized Phase 3 study, half patients of chlorambucil, half patients with ibrutinib, primarily in patients who would be considered appropriate for chlorambucil. Now, there was crossover allowed in this study, and this study started before ibrutinib was approved, and so I think that there were a number of patients who said, I’ll take chlorambucil, just so that they had a 50/50 chance knowing that if things didn’t go well they could then go on ibrutinib.

Ideally this is unique to those patients who are older with co‑morbidities or other medical issues that prevent them from getting aggressive chemoimmunotherapy type strategies, but regardless I think the most useful interpretation of this data isn’t so much the expected outcome that ibrutinib did better than chlorambucil but how well patients do on ibrutinib monotherapy.

This should lead to FDA approval of this drug in frontline. What we don’t know is how narrow or how broadly the FDA will construct that approval. That’s important because what the FDA writes in their guidelines and guidance is oftentimes what insurance will pay for, so‑‑and if they make it a challenge for insurance‑‑it really gets in all sorts of games, if you will. This study is in older patients who are considered inappropriate for chemotherapy, and that’s actually been a patient population for which idelalisib was approved with similar language.

So I think the devil will be in the details of the wording here, but it will introduce ibrutinib broadly or more broadly into the frontline treatment rather than restricted to those patients with 17p, as the label currently is formulated.

Andrew Schorr:

Okay. Now, other news here, a couple of others I wanted to talk about, one is about what had been ABT‑199 (?inaudible) letters of venetoclax, and its utility, and that seems to be coming along, and it seems to be a powerful drug.

Andrew Schorr:

Venetoclax is a very powerful drug in contrast to the B‑cell receptor signal inhibitors, so there‑‑the B‑cell receptor signaling pathway is a sequence of enzymes that help transmit biochemical signals within a CLL cell, and there are a sequence of these. And they include Btk, SIK, PI3 kinase and a variety of others, and there are probably two to five drugs for each of those targets.

But ibrutinib, idelalisib, duvelisib, entospletinib, you know, a variety of these targeted enzymes, those are B‑cell receptor signal inhibitors. In contrast, venetoclax is a Bcl‑2 inhibitor. Bcl‑2 is important for keeping one substructure within a cell arrive, what we call the mitochondria. Mitochondria is like the power generator of a cell, and what Bcl‑2 does is it keeps that power generator functioning. If you administer a Bcl‑2 inhibitor, that power generator goes into self‑destruct mode and takes the CLL cell out with it, and so we see instead of these kind of slow responses that transpire over many months and even years with the B‑cell receptor signal inhibitors, we see dramatic changes sometimes even after a single pill with the Bcl‑2 inhibitors.

Andrew Schorr:

Which is why for people in the trials they have to be monitored very carefully at the beginning.

Dr. Sharman:

Yeah. So, many of the studies that have looked at Bcl‑2 inhibitors have included mandatory hospitalizations for the administration of the drug. And so that’s how that going to translate into a drug that we would generally give as an outpatient I think remains to be seen and are some of the hurdles for that drug.

Andrew Schorr:

But a powerful drug.

Dr. Sharman:

Very powerful drug.

Andrew Schorr:

Okay. And so that gets us to clinical studies, and you discuss them all the time here. As you’re looking at combining drugs now, and that can be expensive. If these drugs get approved or are approved‑‑this is another insurance question maybe too‑‑but can that lower the likelihood that if you were taking let’s say ibrutinib by itself your cancer becomes resistant to it because you’re trying to hit the cancer cell multiple ways, down and out, right? And that maybe is the new horizon for CLL, right? Combinations?

Dr. Sharman:

Yeah. In oncology, the history of oncology has always been dominated by combination therapy. With rare exception the addition of other drugs leads to more cures than just one drug alone. Now, there are exceptions to that, but that is the nature of most‑‑the last 50, 60 years of oncology.

I think what patients want is the opportunity to have a very effective therapy that gets their disease into remission and not stay on therapy, and that’s where we wish to take the field. We’re not there yet. Currently, ibrutinib is once you start it you stay on it indefinitely, and there’s no end point.

Now, that’s okay in many regards because ibrutinib for most patients is a very well tolerated drug with acceptable side effects, but not for everybody. Joint pains, bruising bleeding, atrial fibrillation, there are a variety of reasons why some patients might be intolerant of ibrutinib. And in that regard if we can move the field towards shorter duration of therapy maybe that overcomes some of the cost limitations because if you start doing a Bcl‑2 inhibitor and a Btk inhibitor and maybe a CD20 antibody you could be talking very quickly about a half million dollars of therapy in aggregate cost, and that’s obviously unsustainable if that’s going to be done in perpetuity.

Andrew Schorr:

Okay. So we have economic questions. We have questions on how to outsmart the smart CLL cell. So just to wrap up, Jeff, you hear the news, you’re part of the news, and you’re seeing patients all the time. For people coming to you now and people out here and watching our video are you hopeful?

Dr. Sharman:

Oh, gosh, yeah. I mean, I think one of the sort of magical moments, if you will, of being a doctor is meeting that patient who’s been told they have some cancer and they don’t know much about it and walking them through those first hours of talking to an oncologist perhaps over several visits and watching this transformation from somebody who is very often understandably very alarmed to giving some hope for what’s out there that‑‑I think in a prior discussion we talked about average survival eight and a half years, you know, some of these statistics that are old, those statistics aren’t real anymore.

Our patients with CLL with rare exceptions are going to be living much more normal lives than their counterparts even just a few years ago.

Andrew Schorr:

Great. Wow. You know, that’s very exciting. I want to thank you for all you do.

Dr. Sharman:

Sure.

Andrew Schorr:

Thank you for the hopeful news, and just remind all of you that, you know, it’s said all the time, it almost sounds trite, but it’s so true. Knowledge is power. Be a full partner in your care, consult with someone, a team that’s really knowledgeable in CLL, have an active dialogue. It will give you confidence, it will give you hope, and now you’re hearing that there are more and more tools to help you whatever your CLL situation is. We’ll keep you informed on Patient Power. Thank you for joining us.

From Orlando Florida and the ASH meeting, I’m Andrew Schorr. Remember, knowledge can be the best medicine of all.

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Barriers to Clinical Trial Accrual

Interview With Dr. Michael Thompson (@MTMDPhD), Medical Director, Early Phase Cancer Research Program, University of Wisconsin

9 1/2 year CLL patient Carol Preston interviews Dr. Michael Thompson about some of the barriers to clinical trial accrual and how healthcare professionals might overcome them. Today, there is only about 3-5% of adult patients enrolled in clinical trials versus the 60% in pediatrics. Why is that? Watch the video below to find out.

Barriers to Clinical Trial Accrual from Patient Empowerment Network on Vimeo.

Using Social Media to Inform Patients in Real Time

Interview With Dr. Michael Thompson (@MTMDPhD), Medical Director, Early Phase Cancer Research Program, University of Wisconsin

Alongside interviewer Carol Preston, Dr. Michael Thompson explores some of the new and exciting technology utilized in healthcare and the benefits it presents. To make medical meetings and conferences accessible to all patients, real time feeds are used to “attend” meetings from around the world. The types of feeds available to patients include twitter feeds, blog posts, and even live streams with apps Meerkat and Periscope. This allows patients a valuable insight into what is happening at the national level and makes information easier to find when researching their disease. Watch the clip below as Dr. Thompson explains more fully:

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Using Social Media to Inform Patients in Real Time from Patient Empowerment Network on Vimeo.