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

Does the Clinical Trial Process Need an Extreme Makeover?

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

Downloadable Program Guide

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

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

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


Andrew Schorr:

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

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

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

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

Jim Omel:

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

Andrew Schorr:

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

Jim Omel:

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

Andrew Schorr:

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

Jim Omel:

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

Andrew Schorr:

National Cancer Institute.

Jim Omel:

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

Andrew Schorr:

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

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

Dr. Thompson:

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

Andrew Schorr:

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

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

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

Jim Omel:

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

Andrew Schorr:

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

Dr. Thompson:

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

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

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

Andrew Schorr:

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

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

Dr. Thompson:

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

Andrew Schorr:

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

Jim Omel:

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

Andrew Schorr:

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

Dr. Thompson:

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

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

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

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

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

Andrew Schorr:

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

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

Jim Omel:

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

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

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

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

Andrew Schorr:

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

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

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

Dr. Thompson:

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

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

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

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

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

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

Andrew Schorr:


Dr. Thompson:

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

Andrew Schorr:

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

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

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

Jim Omel:

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

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

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

Andrew Schorr:

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

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

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

Dr. Thompson:

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

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

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

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

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

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

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

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

Andrew Schorr:

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

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

Jim Omel:

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

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

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

Andrew Schorr:

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

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

Dr. Thompson:

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

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

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

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

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

Andrew Schorr:

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

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

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

Jim Omel:

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

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

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

Andrew Schorr:

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

Dr. Thompson:

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

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

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

Andrew Schorr:

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

Jim Omel:

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

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

Andrew Schorr:

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

Dr. Thompson:

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

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

Andrew Schorr:


Dr. Thompson:

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

Andrew Schorr:

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

Dr. Thompson:

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

Andrew Schorr:

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

Jim Omel:

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

Andrew Schorr:

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

Jim Omel:

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

Andrew Schorr:

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

Dr. Thompson:

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

Andrew Schorr:

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

Jim Omel:

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

Andrew Schorr:

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

Jim Omel:

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

Andrew Schorr:

Yes. And long life, Jim. Thank you.

Jim Omel:

Thank you.

Andrew Schorr:

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

Dr. Thompson:

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

Andrew Schorr:

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

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

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.

ASCO 2018

It’s almost time for ASCO 2018, the biggest event in cancer medicine. The American Society of Clinical Oncology’s annual meeting brings together more than 32,000 oncology professionals from around the world to discuss state-of-the-art treatment modalities, new therapies, and ongoing controversies in the field. View the latest ground-breaking science that will be featured at this year’s Annual Meeting here. This year’s meeting will take place from June 1 – June 5, in Chicago, Illinois.

The meeting offers informative educational and scientific sessions that highlight the latest in cancer care treatments. Educational sessions feature world-renowned faculty discussing state-of-the-art treatment modalities, new therapies, and ongoing controversies in the field. Science sessions present the latest ground-breaking research in oral and poster format. You can check out the 2018 Program here.

Follow Along

During the conference you can follow along on Twitter with the official meeting hashtag #ASCO18 or by following @ASCO to get the latest meeting news, research, and announcements.

We will also be tweeting the patients’ perspective during #ASCO18. Follow us on Twitter to experience it through the eyes of patients.

For expert perspectives on controversial topics as well as highlights from education and scientific sessions, check out the official news source, ASCO Daily News.

Join the Conversation

In honor of  the 2018 ASCO theme, Delivering Discoveries: Expanding the Reach of Precision Medicine, we will be hosting a special #patientchat on Friday, June 1st about what precision medicine means for the patient. Please join us on Twitter at 10am PT | 1pm ET.

If you are attending the conference, consider attending the #ASCO18 Tweetup. The official ASCO Tweetup is an informal gathering for attendees interested in the intersection of oncology and social media to meet and mingle. Join us on June 2, 5:45-6:45 PM in the Plate Room food court (North Hall Level 2.5).

Spotlight On: National Cancer Research Month

Cancer research. It has taught us about risk factors, environmental factors, health screenings, causes, treatment options, metastasis, recurrence, rates of survival, and even how healthy cells might be used to wipe out the cancerous cells. Cancer research is broad and reaches far beyond the study of the infected cells. The research helps us to understand cancer and the many aspects of it that will affect the estimated 1,735,350 people who will be diagnosed with cancer in 2018, not to mention the millions already living with the disease. The years upon years of research devoted to cancer has led to valuable insight and life-saving measures. To emphasize the importance of the contributions of cancer research, the month of May was established as National Cancer Research Month and is led by the American Association for Cancer Research (AACR). More information about National Cancer research month can be found here and here.

When it comes to cancer, the areas of research are vast. Many people may not know that there is more to cancer research than looking for treatments or a cure. To understand cancer, researchers spend years discovering how the disease forms, what environmental factors play a role, and what treatments might stop it. The types of research range from basic cancer research that studies the actual cancer cells to survivorship research that studies how cancer affects people after treatment. Database and population-based research are also critical to learning more about cancer. At the Canadian Cancer Society gives a thorough description of the various kinds of cancer research and the value they have which can be found here.

Once considered a hopeless disease, cancer plagued civilizations dating as far back as ancient Egypt, which you can read about here and here. However, it was in the early 1900s that worldwide cancer research began to offer a more clear understanding of the disease. Groups, like the AACR formed in 1910 and the Canadian Cancer Society formed in the 1930s, brought doctors and scientists together with the mission to search for ways to eradicate the disease and help improve the quality of life for those living with cancer. It was 1971 when President Nixon declared a war on cancer. The disease had become the second leading cause of death by 1970 and Nixon’s signing of the National Cancer Act of 1971 aimed to amplify the national efforts against cancer. The act established the National Cancer Institute (NCI) in its current form. Formerly created by the National Cancer Act of 1937 as the federal government’s agency for cancer research, the NCI was strengthened in 1971 with broader authority given to the director and more emphasis placed on research that included public and private partnerships, funding for additional cancer research facilities, and the creation of an international research data base. Today, the NCI is made up of about 3,500 people and 30 divisions, offices and centers all working to advance cancer research. The NCI, which calls itself the leader in the nation’s cancer research, reports that in the last few decades there have been declines in rates of new cancer and overall cancer deaths and that the number of cancer survivors in the United States more than doubled between 1992 and 2016 from 7 million to more than 15 million and the number is expected to rise to more than 26 million by 2040. More information about the NCI and it’s history can be found here and here and here.

For those affected by cancer, the research can be critical and today it is more accessible than ever. Research groups and advocacy organizations are available to patients and caregivers all day, every day through the internet. Data can be found, reviewed and discussed all from the comfort of your own home, favorite coffee shop, or wherever you have access to wifi thanks to programs such as the Patient Empowerment Network (PEN) Empowered Patient Chats , Patient Cafe , and Facebook groups. Not only are the patient resources increasing in number, they are increasing in value. “Online communities may be virtual, but they are no less real in terms of support and influence,” writes Marie Ennis-O’Connor in her September 2017 post for PEN’s Patients Helping Patients Blog. Ennis-O’Connor’s post, 12 Keys to Finding, Growing, and Nurturing Your Online Community, emphasizes the value of online communities to cancer patients when it comes to research, support, or any number of topics critical to ensure that patients stay informed, supported, and empowered.

Introducing Our New Facebook Community: Empowered Patient Chat

We are excited to announce that our new Facebook group is now live, and waiting for you to join! This new online community builds on the success of our Empowered Patient Chat (#patientchat) tweetchat and aims to extend the discussion beyond Twitter and engage a larger population of patients and caregivers on Facebook.

Living with a disease or other chronic condition is challenging for patients, their families and friends. The Empowered #patientchat strives to engage and empower patients and caregivers by connecting them with each other, sharing resources and inspiration across conditions, and exploring important topics of interest to those in healthcare who want to elevate the patient voice in all healthcare matters. The community is guided by a belief in keeping the patient perspective at the forefront of all healthcare interactions, the strength of peer support, and the power of shared decision making in healthcare. 

Empowered Patient Chat (#patientchat) is a community of patients, caregivers, and healthcare professionals, interested in achieving their best health possible by discussing topics of interest in healthcare from a patient’s perspective. 

Topics of interest have included:

  • Including Patients and Care Partners: Let’s Talk Healthcare Conferences
  • Overcoming Disparity in Clinical Trials
  • Are We Missing the Mark with Patient Involvement
  • Understanding Medical Research
  • How Does Technology Benefit Patients
  • How to Include Patients in Design
  • What to Do When No One Will Listen
  • Caring for the Whole Person
  • Self-Care Goals
  • Managing Stress of Being a Patient
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Spotlight on National Minority Health Month

April is National Minority Health Month. Supported by Congress with a resolution in 2002, National Minority Health Month is meant to bring awareness to the disparities in health and healthcare among minorities. Led by the Health and Human Services Office of Minority Health, efforts are made to understand the disparities and the reasons they occur. The 2018 theme, Partnering for Health Equity, encourages organizations to come together to find solutions that will help equalize health for all races and ethnicities. More information and resources for National Minority Health Month can be found here.

Evidence of disparities in minority health exists in all major illnesses and diseases, including heart disease and diabetes. However, the disparities, compiled by, related to cancers, clearly emphasize the impact on people’s lives. In the United States, African Americans have the highest death rate and shortest survival time of any other group of cancer patients. Cancer is the leading cause of death for Asian Americans and Pacific Islanders. Heart disease is the leading cause of death for all other groups. According to, African American women have a higher incidence of aggressive breast cancer. American Indian and Alaskan Natives have higher rates of kidney cancer. Hispanic and African American women have higher rates of cervical cancer and die from it more often. More disparities can be found here and here.

There are a number of reasons believed to be involved in causing the disparities in minority health. They range from socio-economic status and environment to lack of scientific data about minority groups which results in disparities even in some of the most common healthcare screenings. For example, reports, the guidelines that determine when women of average risk should begin screenings for breast cancer come mainly from the data gathered on white women. However, researchers discovered that those guidelines could delay detection in minority women, who tend to develop the disease at earlier ages. More about the study, which emphasizes the importance of understanding how cancer occurs in people of all ethnicities, can be found here.

Another reason for the existence of disparities could be biological. Researchers are looking into the occurrence of prostate cancer in African American men, who not only have a higher risk of developing prostate cancer, but they develop it at a younger age and tend to develop a more aggressive form of the disease. According to the U.S. Department of Health and Human Services National Institute on Minority Health and Health Disparities website,, researchers are studying why African American men are more at risk for prostate cancer and what can be done about it. Genetic makeup, access to healthcare, and environment are all being considered as factors. One study discovered that African American men and white men have a difference in the biomarkers that predict the aggressiveness of a prostate tumor. The study results are being tested further and expanded to look at other more factors and other biomarkers. More about the study can be found here.

There is much more to be learned about the disparities in minority health, why they exist, and how to prevent them. Increased attention and the increasing awareness of National Minority Health Month spotlights the need to eliminate the inequities in health for all races and ethnicities, which will empower us all.

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US Health Care & Medical Debt Statistics

Uber Health and Five More Groundbreaking Ideas Changing Healthcare Delivery

Healthcare in the U.S. is an industry that’s ripe for innovation. From a convoluted insurance system to a complicated chain of care to a lack of price transparency, many factors combine to create a healthcare system that’s slow, expensive, inefficient, and difficult to navigate.

But some companies are fast at work addressing the many pain points of patient care. Whether they’re small startups or large companies we already know, there are plenty of businesses out there working to make a difference in the healthcare space. Below, we’ve rounded up six ideas that are changing how healthcare is delivered today.

Uber Health

Every year, 3.6 million Americans miss doctor appointments due to a lack of reliable transportation, contributing to a high rate of no-shows, reaching as much as 30 percent nationwide. At the beginning of March, troubled ride-share company Uber announced the launch of Uber Health, a new initiative that partners with healthcare organizations to provide reliable transportation to patients in need. Here’s how it works: a coordinator schedules the Uber ride on behalf of the patient, and the patient communicates with the driver via text or call to facilitate the logistics.

The HIPAA-compliant system helps reduce appointment cancellations and saves the healthcare organizations money (as compared to using taxis or other transportation options). “Uber has helped us drastically reduce appointment cancellations. It’s great to be able to quickly request a ride with so that in-need patients can make an appointment they’d otherwise miss,” said Pete Celano, Director of Consumer Health Initiatives at MedStar Health, in the release announcing the nationwide launch of Uber Health.

Zocdoc Insurance Checker

Insurance is notoriously cryptic and confusing, and health insurance is even more difficult to decipher than other kinds of policies. How do you know what your health insurance will cover and what it won’t? Can you be 100 percent certain that a new doctor is in your network? To answer these questions, the online medical scheduling platform Zocdoc launched their Insurance Checker at the very end of last year. Patients take a picture of their insurance card, then Zocdoc extracts the important data and determines whether or not a doctor is in-network under the patient’s plan. This makes it easier for the patient to schedule visits and cuts down on surprise out-of-network charges.

Nomad Health

Have you ever been sick, only to discover that the earliest available appointment at your primary care physician’s office is in two weeks? Instead of waiting, you can call up a doctor, speak to one within a few minutes, and get a diagnosis and even a prescription, all without leaving the comfort of your home. While telemedicine has been around in some form or fashion for years (early leader Teladoc was founded in 2002), startups have recently jumped into the telemedicine space, hoping to provide a new twist on the concept of a virtual doctor visit.

The startup Nomad Health seeks to combine this telemedicine idea with the gig economy, allowing doctors to contract for virtual freelance via videoconferencing appointments. The service also includes postings for full-time positions, as well as travel nurse positions. Like employees in other industries, medical professionals are seeking more flexible and remote work schedules, and Nomad Health hopes to seamlessly connect them with these very opportunities while providing convenient video appointments for patients.

Osso VR

For decades, cadaver dissections have been the primary way of training surgical residents. But a host of new companies are using virtual reality (VR) technology to train future healthcare providers in a variety of situations. Osso VR, a startup that closed $2 million in funding last year, uses realistic simulations to teach orthopedic surgeons new techniques. Unlike cadavers, which often can only be used once, surgeons can practice VR simulations over and over again until they achieve proficiency.

Not only does VR make it cheaper to train surgeons, it also means that patients are being operated on by more experienced residents who have performed dozens of simulations (rather than just a handful). “In med school, they say ‘see one [surgery], do one, teach one’…but the truth is you need to do 50 to 100 cases for proficiency,” Justin Barad, Osso VR CEO and Founder, told Forbes.

Google’s Launchpad Studios

Google’s new Launchpad Studios program matches machine learning startups with Silicon Valley experts — and the inaugural class of seven startups all focus on addressing healthcare and biotech problems using artificial intelligence. American and international startups Augmedix, Cytovale, Nanowear, Owkin, Portal Telemedicina, Byteflies, and BrainQ joined the effort.

Each startup seeks to use machine learning in a slightly different context; for example, BrainQ identifies brain wave patterns in patients after neurological disorders to help aid in treatment, while Nanowear uses nanosensors in smart textiles to gather patient data and improve diagnostics. Google plans to establish other tracks for Launchpad Studios, but the fact that the company chose healthcare and biotech to be the first one indicates that Google is prioritizing healthcare innovation.


The year is 2030. You check in at your doctor’s office, and before you enter an exam room, you get a full body scan, and its data is fed to an AI algorithm that can spot patterns that might indicate health problems. By the time you make it to the exam room, your doctor has your data queued up, ready to review it with you and compare it to your genetic testing results. Before you leave, you’re given a wearable that will continuously relay health data back to your provider.

Sound futuristic? This process is already happening at Forward, a new kind of doctor’s office that has locations in Los Angeles and San Francisco. Not every doctor’s appointment can be done virtually through telemedicine, and Forward wants to make sure that when you do go to visit your doctor in person, the experience is seamless and digitally integrated.

The Future of Health

These concepts are just a sampling of the many new startups and innovations in the healthcare space. The future of healthcare is bright, primarily because these thinkers are funneling their efforts into problem-solving solutions that make the healthcare system smarter, more user-friendly and more well-connected.

A Song for Raising Hope and Awareness for Pancreatic Cancer

The Voice Finalist Erin Willett Teams Up with Songwriters Elizabeth Russo and Tova Litvin To Write an Anthem of Hope and Raise One Million Dollars for Pancreatic Cancer Research

Pancreatic Cancer Action Network (PanCAN) Sets Goal to Double Survival by 2020

 Songwriters Elizabeth Russo, Erin Willett and Tova Litvin, whose lives have all been touched by pancreatic cancer in their families, have joined forces to write an original song “Hope’s Alive” and raise one million dollars this year for pancreatic cancer research.  “Hope’s Alive” is produced by Russo’s good friend Dan Whittemore. The songwriters have teamed up with the Pancreatic Cancer Action Network (PanCAN) to raise awareness, as early detection is the best way to improve outcomes for the disease.  The current five-year survival rate is 9%, but PanCAN’s goal is to double that by 2020.  100% of proceeds from sales of “Hope’s Alive” will go to PanCAN to fund cancer research.

Russo, who spearheaded the project, learned her father was diagnosed with pancreatic cancer in 2017 and is currently fighting the disease.  Russo recruited Willett (who was a finalist on the Voice and most recently transformed herself on the Biggest Loser) to co-write and sing “Hope’s Alive”.  The project was poignant for Willett, whose father sadly passed from pancreatic cancer in 2011.  “It’s all about putting my energy into something positive,” Willett said.  “I can’t control the fact that my father isn’t here, but I can control my activism and my actions via the story I tell.”  Willett, who has been advocating for pancreatic cancer research since her father passed, connected the songwriting team with PanCAN.  Russo also recruited Litvin, whose mother is a five-year survivor, and together the three women combined their efforts with PanCAN to combat the disease. 

To give “Hope’s Alive” an anthem quality, Russo knew she wanted to include a choir as part of the song.  With the help of PanCAN, Russo assembled a choir of pancreatic cancer survivors and caregivers.  The choir members are also the faces of the song’s accompanying music video.  “There are things everyone can do,” Russo said.  “Don’t feel helpless or hopeless.  We are all here, we are all going to stick together, and we are going to make a difference with this disease”. 

Watch Hope’s Alive

To learn about risk factors and early detection of pancreatic cancer, please visit

For inquiries, please contact Elizabeth Russo at

Hope’s Alive is now available for download on iTunes and all other platforms.


Living With Two Cancers

My story with cancer started in 2008 when I was diagnosed with Multiple Myeloma. I was fortunate to have a primary care physician who noted abnormalities in routine blood work and sent me to a hematologist oncologist. At the time of diagnosis I was at the MGUS stage, precursor to active Myeloma, and was monitored every 6 weeks. During that time I switched to a Myeloma specialist in the health system where I was employed as a PT. I also hit the internet to learn more about this cancer that I had never heard of. BIG MISTAKE! The published survival rates at the time were 2 years. I wasn’t ready to hear that so I stopped reading.

Over the next year I pretty much refused to own the fact that I had a cancer diagnosis. I wasn’t being treated, might never be treated and felt ok except for fatigue. That all came to a screeching halt one day when I had extreme pain in my left arm and suddenly couldn’t lift my arm. I went to the ER and was diagnosed with a pathological fracture of my left humerus, upper arm. I saw my specialist the next day and began treatment immediately since I now officially had active Myeloma.

I responded well to treatment and went on to have an autologous stem cell transplant (ASCT) 9 months later. This led to a complete response and almost 3 years with no treatment until I relapsed. I began treatment again with the same drugs that had worked so well before and again had a good response. I continued with this for almost 4 more years until one day in October 2016 all hell broke loose. I was in my oncologist’s office for a regular appointment waiting for him to come into the examining room when I crashed. I was rushed across the street to the ER where I was admitted. A few days later, after many tests, I was diagnosed with Acute Lymphoblastic Leukemia, ALL.

I spent the next month in the hospital receiving induction chemotherapy for the ALL and the next 6 months for consolidation therapy. During those months of treatment for the ALL I relapsed again for the Myeloma. After I completed my ALL treatment, that’s now in remission, and recovered from that chemo, I began treatment with one of the monoclonal antibodies for the Myeloma. Now, 8 months later, I feel about the best I have in years and my blood levels are all in the normal range.

Although I’ve gone through a lot, especially since being diagnosed with the ALL, I continue to enjoy and live my life. I worked 6 more years after my diagnosis with Myeloma. I specialized in treating people with cancer as a PT. My cancer diagnosis brought me closer to my patients since they knew that I understood what they were going through. I continued to travel to Europe to teach, attend conferences and for pleasure. After my retirement I  have also been volunteering for the American Cancer Society and been very active as a board member and program chair of my local Myeloma support group.

Encouraging others who have been diagnosed with cancer has been a mission of mine for many years. Now, as a person with two blood cancers, I find that that helps others, but also me. With the treatments that are now available to us, we often can live fairly normal and long lives. Who would have thought that I would still be here when I was diagnosed 10 years ago? I attribute that to the wonderful medical care I have received from my oncologist and his team, the research that has led to more effective treatments and to the support of my friends and family. But, most of all, is my own self education about my cancers and my relationship with my oncologist. I believe that being an active partner in my care has been extremely important. I look forward to continuing to enjoy those things in life that are important to me.

Nancy Stewart
Multiple Myeloma 2008
Acute Lymphoblastic Leukemia 2016

Health Tips To Support A Senior Through Cancer Recovery

Cancer can happen at any age, but it’s most common in the elderly. The American Cancer Society explains 87% of all cancer cases in the United States are diagnosed in people 50 years old and over. Cancer in older age brings with it many unique problems, including, pain, depression, loss of strength and fitness, cognitive decline, and dementia. If you’re caring for an elderly cancer patient, it’s important you coordinate with their cancer team. Recovery plans focus on physical, social, and emotional health to give senior cancer patients the best quality of life possible.

Prepare healthy food

It’s never too late for anyone to start eating healthy. It’s important you give the elderly person you’re caring for enough nutrients from a variety of fruits, vegetables, dairy, pulses, and grains. Red and processed meat should be limited, or preferably avoided altogether. You should also check with their doctor whether they have any special dietary requirements.

Cancer patients often have reduced appetite. The key is to give them calorie-dense food — soups, smoothies, and stews, for example. It’s also important to set routine family meal times. Socializing is an important part of recovery.

Protect their safety

An elderly cancer patient is in a vulnerable position. Do your best to make sure they’re safe around the home before they return from the hospital. Install night lights in the hallways and bedrooms. Ensure carpet is securely fixed in place and remove loose rugs to prevent falls. They may need help with everyday tasks, such as, bathing, dressing, moving around, and going to the toilet.

Encourage exercise

Unfortunately, cancer treatment takes its toll on the body and mind. It often leaves patients fatigued, which is a feeling that can often strike without warning. Nonetheless, a gentle yet regular amount of physical exercise is highly beneficial seniors. Not only does it boost their mood, but it also helps improve mobility, strength, flexibility, and balance.

Give emotional support

Cancer treatment is stressful, but talking about it can help. While it’s up to the senior you’re caring for how much they open up, let them know you’re there for them if they want to talk. They may also be interested in joining a support group for practical advice.

Ultimately, it’s important your senior has a social and emotional outlet to support them and make them feel less alone. If you ever have any problems or concerns, let their cancer team know. You’ll be given as much help and support as you need.

About the Author: Chrissy Rose is a Content Manager and is working to build one of the best senior resource sites.

How a Cancer Planner Helps Patient & Caregivers Keep Track of Progress

I know, it’s so scary. Making a plan to cure yourself and save your life. Literally, you have the weight of your world in your hands. But not to fear. Even though there is still no “cure” for cancer, many have successfully healed themselves from the deadly disease. Be assured there have been many countless cancer survivors before you who have paved the road to recovery with hope and encouragement. We’re just here to guide you on your way.

Being diagnosed with cancer is terrifying. So finding assistance and helpful information should be easy. In this blog entry, I will be guiding you through how to create the best appropriate cancer plan for your body and your condition. Within a cancer plan are three distinct segments – a treatment plan, a payment plan and a recovery plan. A treatment plan considers all of the patient’s therapy options, including conventional care and alternative methods, to make the best informed decision per condition. A payment plan accounts for the finances and how to outsource funds to pay the inevitably heft medical bills. And lastly, a recovery plan includes the supplementary actions that need to be taken, such as changing your diet and lifestyle goals. When all three parts function together, it is intrinsic to improving the chances of survival. Effectively enforcing and efficiently keeping track of a cancer plan will help a patient progress through healing swiftly and with a greater peace of mind.

To begin, you should assume it’s your responsibility to know everything about your body and your condition. But isn’t this my doctor’s job? You may askWell, sadly, most doctors won’t be able to provide personal quality care because of the largely disproportionate ratio of registered oncologist to new patients. With approximately 1.6 new cancer cases each year and only 21,200 registered oncologists, there’s a dire shortage of cancer specialists in our country (American Cancer Society, 2014). It’s best if you don’t become solely reliant on your doctor. He/She should really only be there to clarify esoteric information for you. Bring out the doctor in yourself by having a cancer planner to keep all of the information pertaining to your cancer organized & easily accessible. Be prepared for every appointment by doing your own research and coming up with questions beforehand. Make the most out of the time you have with your oncologist because it may be hard to get in touch with them during off hours. Take notes of every appointment so you can keep track of how you’re progressing after each. Accumulating all the data you can possibly find will only benefit you as a patient and caregiver. All you have to do is seek and you will find the answers. And the more you know, the more you have to fight with.


The first thing to consider after your initial diagnosis is – What are the treatment options for my type of cancer? If your cancer is invasive, your doctor will strongly urge you to perform a very aggressive form of orthodox treatment as soon as possible. Be ready to be convinced to do surgery, radiation or chemotherapy. But just know that there are many alternatives on the spectrum of treatments. From surgery, chemotherapy, immunotherapy, gene targeted therapies and clinical trials, to some of the more obscure treatments such as plant extract therapies, there are just so many options available. It’s also common to integrate therapies of the conventional norm and of the alternative. For example, a patient with stage 2 lung cancer may opt to have surgery and also adopt Gerson Therapy as a supplemental treatment where they heavily regulate their diet. So how do you choose the best route? This is where the beauty of having a cancer plan comes in. Start by weighing out your different options in terms of cost, duration, side effects, convenience and the general pros and cons for each. This will help you to filter out the options that aren’t plausible for you and your family. Trust your gut feeling and narrow your list down to the top three options. Create a visual roadmap for each treatment option listing the action steps you’ll need to take in order to see this through and picture yourself after each milestone. How are you mentally, physically, emotionally and financially? Trust me when I say that you’ll have a greater peace of mind knowing that you’ve weighed out all of your options and have narrowed your focus down to the treatment plans you believe will work best for you. Trusting your treatment plan is absolutely vital to fighting your disease. Believe you can and you’re half way there.

Now how do you pay for all of this? There are ways to pay for all of your expenses when you get creative with it. Since crowdfunding has taken off in the last couple years, you’ll be surprised at how many people, whether it’s your friends or those who’ve just heard your story but have never met you, are more than willing to help your cause. You can check out platforms like GiveForwardGoFundMe or Indiegogo. For further financial assistance and direction, you can evaluate these helpful organizations from our resources list (,,, Having a cancer planner will help you to keep track of all your medical expenses in one place and stay on top of your payments. The last thing you want to worry about is all your expenses adding up and getting out of hand.


Finally as part of your recovery plan, it’s important to ask yourself what vital changes to your lifestyle choices are necessary to help you heal and strength your immune system. A breakdown of the immune system is the primary reason humans develop cancer; we must work towards recovery by building back up the immune system with nourishing therapies. There’s a bunch of research you can do on cancer fighting foods you should incorporate into your diet. There is a cancer fighting food pyramid inside of CanPlan to help you get started. What you put into your body is one of the only elements you can control in your fight against cancer, so don’t ignore the importance of it. Now to create the best plan of action to guide you towards recovery, start by keeping track of your daily diet, exercise and medications. Then at the end of the day, rate how you feel overall on a scale of one to ten and what your general mood was for that day. Do this everyday as you start to make your lifestyle changes and notice what elements are and aren’t working for you. Perhaps you noticed that running for 30 mins greatly improved how you felt for that day. Take note of this and be consistent with it in your treatment plan. The more aware you become of your body and how it reacts to certain elements, the better you’ll be able to detect any new symptoms and find ways to combat against it. Keeping track of your progress will help put you in the driver’s seat with your fight against cancer. Don’t wait around for your doctor to tell you how you’re doing. This is your fight. You control how you want it to go.


Remember, you know your body best so always honor your body and how it reacts to certain treatments. A one-size-fits-all approach, much like the plan your doctor will prescribe you, won’t work in this situation. Since there is no “cure” to cancer as of right now, you’ll have to discover the best recovery plan through experimental trial and error. We encourage you to ask for help and seek guidance as much as you can. We’re lucky enough to live in an era, and country, with unlimited access to infinite knowledge where we can freely acquire information to make a well-informed decision (just be sure to double check your sources). It’s as if we’re given all the tools we’d need to be our own doctor. Now isn’t that a progressive thought.

Meet the Author : Sharon Kim

Notable News: February 2018

Sometimes, even the most seemingly unrelated of symptoms can be a warning sign of cancer, says While some might associate depression as a side effect of cancer, it can actually be a sign of cancer growth in the body. Some cancers actually trigger depressive symptoms. The phenomenon was first noted in 1931 with pancreatic cancer patients and more recent research supports the findings. The invasion of the cancer cells causes the body to release cytokines which are messenger chemicals that when released by certain cancers create an inflammatory immune response in the body along with the neurological response that causes depression. The theory is that when the cancer is removed from the body, the depression will gradually be reversed. This story emphasizes the importance of listening to your body and not ignoring symptoms that something more serious might be going on. Learn more here.

A new treatment for a common, but often not discussed side effect of breast cancer is showing positive results, says Lymphedema, a condition that is common after cancer treatment, can cause painful swelling of the soft tissue of the arms and legs and can increase the risk of infection and can be life threatening. It is often the result of the removal of lymph nodes and radiation used to treat cancer. Some surgeons are experimenting with repairing or recreating a healthy lymph system for patients who develop lymphedema. The surgery, which has been around for about ten years, but has recently been perfected due to advances in body imaging, involves transferring lymph nodes from parts of the body that weren’t affected by the cancer treatment. Another type of surgery is designed to prevent lymphedema altogether. When the lymph nodes are removed, instead of cutting off the vessels they are reattached to a vein so that the drainage system has as little interruption as possible and the risk of lymphedema is reduced. You’ll find more about lymphedema, the surgeries to prevent it, and some patient stories here.

There’s new research from the National Cancer Institute, says, that might make you stand up and take notice. It turns out that even just one hour of sitting increases your risk of getting nine types of cancer, including lung, and head or neck, in addition to breast and colon cancers. The information was reported at the American Association for the Advancement of Science conference in Austin, Texas earlier this month by Charles E. Matthews, an epidemiologist at the National Cancer Institute. Matthews says that eliminating health risks requires four to five times more exercise than previously thought. While exercising more is important, says Matthews, even more important is less sitting. Matthews recommends adding in light household chores or taking a walk instead of watching television. Get more information here and you can also watch a short video reporting the findings here.

Finally, February is Cancer Prevention Month. According to, research and studies continue to show that the majority of cancers are the result of lifestyle choices and environmental factors that could be changed or avoided to prevent between 70 to 90 percent of the gene mutations that cause cancer. Fortunately, some of the ways to prevent cancer are pretty easy and painless. You can find six strategies from Moffitt Cancer Centers here and seven tips from here. Of course, whether it comes to prevention, treatment, or support, you will find some of the best resources available right here with Patient Empowerment Network. Check out our programs here.

Flu Epidemic Highlights the Need to Take Precautions

If you’re the type of person who doesn’t believe in getting flu shots or who doesn’t take precautions, the 2017-18 flu season surely should convince you of the seriousness of the threat. According to the Centers for Disease Control, the infection rate has reached 7.7 percent, which makes it the equal of the deadly swine flu outbreak of 2009. Hundreds of thousands nationwide have been hospitalized with the flu, and more than 40,000 have died, some of them even children, which means the 2017-18 flu virus has reached epidemic levels. There are many ways to prevent the flu, including well-known steps such as frequent hand washing, disinfecting, and getting the flu shot, to smart lifestyle choices that bolster your system against infectious illness.

Remember, when it comes to avoiding the flu, your dog isn’t necessarily your best friend. You can contract the flu in nontraditional ways, such as the interspecies transmission of a virus, which sometimes creates a more harmful or easily transmissible mutation to occur. This can be especially dangerous with the influenza virus, which is able to evolve pretty easily.

Smart choices

Few things protect you as well as good, restful sleep each night. It restores your body and strengthens the immune system, so it’s advisable to avoid alcohol consumption, which disrupts your REM sleep. Feeling tired and worn down makes you much more vulnerable to the flu. Same goes for caffeine, so cut back on all that coffee, especially in the evening. Consider switching to decaf. And don’t be worried about taste, many brands are just as tasty as the real thing, even if they don’t supply that jolt. Even better, substitute green or black tea for coffee, and don’t stint on the lemon and honey, which offer their own health benefits (honey has antibacterial qualities).

Protein is another ally in your battle against the flu. Eat fish and eggs as much as possible, because of their ability to strengthen the immune system. If you need something a bit more than plain old scrambled or fried eggs to start your day, a soufflé or frittata will get the job done just as well, plus you can mix in all kinds of tasty things, like onion, cheese, and any greens you please.

Account for high-traffic areas

Most people pick up a virus at work. Things can get pretty hectic at the office, and it can be easy to forget to disinfect your surroundings or yourself. Plus, you’re also forced into close quarters with people who may be chock full of germs and should probably be at home convalescing. That makes work a “perfect storm” for the transmission of a highly infectious illness like the flu. Make liberal use of disinfectant wipes around your work station and anywhere else you might come into contact with germs others have left behind (such as the coffee pot, door handles, etc.). Remember that viruses can survive on surfaces for days.

Use your own pen

Considering how easy it is to get sick just by touching seemingly innocuous objects, it’s a good idea to carry around your own pen so that you’ll have something germ-free to write and sign things with at the bank drive-through or the pharmacy. It’s a good way of controlling your environment, rather than using a pen that’s been passed from hand to hand.

Just juice it

Juice a cold, juice a fever. That’s been the advice of medical science for a long time. Having a juicer makes it easy to follow that advice, since you can juice just about any fruit or vegetable, which will help keep your immune system strong.

You don’t have to spend flu season in a plastic bubble, but you should try to control your own environment and reinforce your immune system. Try looking at every object as a potential carrier of germs. And be sure not to neglect your sleep or diet.


Courtesy of Pixabay

Living Well with MPNs – The Power of Diet & Exercise

The Power of Diet & Exercise: Advice From MPN Experts

Living Well With MPNs: The Power of Diet & Exercise from Patient Empowerment Network on Vimeo.

The expert panel featured renowned MPN specialist and researcher Dr. Ruben Mesa and was joined by other experienced clinicians and patients on the broadcast, to share knowledge and advice about the benefits of a healthy lifestyle when dealing with myeloproliferative neoplasms (MPNs).


Andrew Schorr:

And hello, wherever you may be. Welcome to this Patient Empowerment Network program. I’m Andrew Schorr from Patient Power. We’re going to discuss the power of diet and exercise, and get advice from MPN experts. We want to thank Insight Corporation for their support. We’re gonna cover the country – the U.S. country – today with our experts. I have my own experience with an MPN, myelofibrosis, diagnosed in 2011, and I’m an avid runner, and I like to go to the gym, and I certainly like to have my weight be just right. Some of this has been a challenge along the way, and we’re gonna get advice from the experts on that. We’re also gonna meet a patient from New Jersey, and we’re gonna meet a noted expert from San Antonio, and a dietitian who’s an expert in oncology diet, and she’s in North Carolina.

So, let’s get started. And remember, you can send your questions to And if you have some favorite recipe or some exercise tip, send that too. All right, let’s go first to Westfield, New Jersey, about 19 miles from New York City, meeting someone who grew up in Brooklyn but now lives with her family in suburban New Jersey, and that’s Julia Olff. Julia, welcome to the program.

Julia Olff:

Hi, thank you very much.

Andrew Schorr:

Thank you, Julia. Now, Julia, you and I have met a couple of times. We did a Town Hall event in New York City near Grand Central Station, and you were there. And then a few weeks ago, we were all at Cornell Weill, and across from where you used to work for five years at Memorial Sloan Kettering. So, as I understand it, nine years ago, you were diagnosed with ET, and then a year later, it became what I have too, myelofibrosis. How did it start?

Julia Olff:

It really was diagnosed incidentally through a physical – annual physical exam and routine blood work.

I think in retrospect, I had symptoms. Probably like other folks, I had thalamic migraines over the years and some blood abnormalities, but it was really a physical exam. And I was not symptomatic that I was aware of at that time.

Andrew Schorr:

Okay. And it didn’t worry you, at that point.

Julia Olff:

I mean, I know we’ll talk more about it. I worked in health education. I worked on patient education materials at the time. When I was told I had ET, I was sort of thrown because I was one of those people that were always healthy, always focused on health. And it concerned me, but I was not yet worried.

Andrew Schorr:

Okay, so here comes myelofibrosis.

Julia Olff:

Right. That worried me. So, that also was diagnosed at that point then through bone marrow biopsy, and they were able to determine some initial mutations related to myelofibrosis.

And I saw a local oncologist, who was now more serious about this as the more serious form of the illness, and looking on the Internet. And now this is actually about 2008. You know what kind of information was available at the time. It was pretty dire. So, that kick started my getting more serious about it.

Andrew Schorr:

Okay. Now, you’ve had some hospitalizations, too. So, it’s been up and down, right?

Julia Olff:

Yeah, I think it’s a real ebb and flow. I feel, in a lot of ways, fortunate that it’s nine years out, and I have not had some of the hallmark symptoms that others have. But I have had these strange, sort of out of nowhere; I can feel fairly good, barring fatigue and some pain. And then out of the blue, I had a TIA. I’ve had a few hospitalizations for colitis. And those set you back, you know?

They take a good six to eight weeks to recover. And if you saw me in August, you would see the really lethargic, slow-moving me.

Andrew Schorr:

So, what’s your exercise routine?

Julia Olff:

Well, I know we were talking earlier. I had two dogs, most recently one, and he just passed away. That has been my exercise routine. So, I don’t feel energetic enough to do things like biking, even though I have a lovely bicycle. But I do try to walk every day. And right now, I’m feeling well enough that I push myself to walk a little longer. And I think as it gets darker in the year – I’m on the East Coast. As it gets colder, I do really have to push myself. But I wholeheartedly advocate for having a pet, because you need to get out, and that really helps a lot. So, walking is key for me.

Andrew Schorr:

And diet, I know. So, you’ve got a high school kid at home and a college kid who’s coming back. And you’ve had five children in a blended family, I know. So, it can be a busy place. What do you eat, and what do you eat consciously that you feel helps you as you’re living with an MPN?

Julia Olff:

Well, I think the thing that’s helped me the most is actually following Weight Watchers. And I know we were talking earlier that being on Ruxolitinib or Jakafi has added pounds. And it has. And that sort of prompted me. I finally got fed up with myself, and I joined Weight Watchers. And I think the most important aspect of Weight Watchers is, one, portion control. And then the other part is eating fresh food. So, that changed or really pumped up my diet. So, one, I started to receive organic groceries delivered to the house, which also helps a lot when you’re feeling fatigued. So, I try to eat as many fruits and vegetables at every meal. And I feel like that’s helping me.

Andrew Schorr:

Okay. All right. We’re gonna get more from you along the way. And I want you to chime in with questions. Let’s meet one of the best-known experts as a physician devoted to treating MPNs, and that’s Dr. Ruben Mesa. He recently moved from where he was with Mayo Clinic in Arizona, and now – you’ve got a long title, Ruben. I’ve got to give it. It’s Director of Mays Family Foundation, Distinguished University Presidential Chair Professor of Medicine at the UT Health San Antonio Cancer Center. I’m so glad I got it right. Ruben Mesa, welcome to our program. It’s great to see you again.

Dr. Ruben Mesa:

Hey, it’s always a pleasure to be on these Patient Power events.

Andrew Schorr:

Thank you so, much. And Patient Empowerment Network program. Thank you so much, Ruben. So, Ruben, we’re gonna come back to you and have you really put diet and exercise in perspective.

And I know you’ve seen thousands of patients. And I’m sure patients have shared with you every diet, every kind of exercise. You’ll have stories to tell, won’t you?

Dr. Ruben Mesa:


Andrew Schorr:

Okay. All right. Let’s skip over to Winston-Salem, North Carolina, and meet someone who’s been on other programs we’ve produced. And that’s Julie Lanford. Julie is a registered dietitian, nutritionist. But beyond that is at Cancer Services, a nonprofit in North Carolina, Julie is an oncology dietitian. Julie, welcome to the program.

Julie Lanford:

Thank you so much.

Andrew Schorr:

Let’s get started. So, first of all, Ruben, we’ve heard you talk a lot about the differences in MPNs. And so, really, there’s not a one size fits all, even really the diet and exercise, Ruben, is there?

Dr. Ruben Mesa:

There truly is not. I mean, certainly, with MPNs, we really have to think about diseases that people live with. They live with, for long periods of time, many even the rest of their lives – with their MPN. So, again, I try to frame it for folks. For many, it’s really about managing a chronic condition. And being a chronic condition, the things that we do in terms of our lifestyle are very important, both in terms of what we eat, how active we are, how well we sleep. There are many key parts that are related, without question.

Andrew Schorr:

Okay. I gotta ask one question off the top. Julie referred to it, and I wonder about it, too. So, I’ve been taking Ruxolitinib for five years. Julia, for four, I think you said, Julia.

Julie Lanford:


Andrew Schorr:

And so, what I wonder about, Ruben, is there anything about that medicine that some of us take, some people for PD as well, that lends to weight gain, scientifically?

Dr. Ruben Mesa:

It’s difficult to know. Clearly, people gain weight, at least on average, to some degree, with taking Ruxolitinib. Now, part of that reason for weight gain is that an MPN causes weight loss overall. And MPNs in general burn more calories than if you don’t have an MPN. The activity in the bone marrow, all those cells being produced, and turning over that burns more calories than it does otherwise. So, part of the weight gain may be turning off that extra calorie burn that the MPN caused. So, part may be, again, you’ve kind of adjusted your diet, etc. In the past, you were able to get away with eating more. And then if the disease is quieter, you gain some weight. Now, I’d say even though that’s part of it, it does seem that people do gain a little bit more weight than even that with the Ruxolitinib.

And it may well have to do in part with some of the secondary effects of the Ruxolitinib. Ruxolitinib inhibits JAK2. That’s one of the key reasons it was tested in MPNs. And with that, helps to shrink the spleen, helps people feel better. Maybe help even avoid progression of the disease or decrease that likelihood of progression. But it has an impact on a whole bunch of different proteins that circulate in the blood that we call cytokines. Cytokines can be involved with inflammation, but they may be involved with other parts that kind of control how things are working in the body. And it may be blocking of some of those cytokines that may account for a little bit of that change in weight.

Andrew Schorr:

Hm. Okay. And related to the other medicines that we take, some people take interferon, some people take hydroxurea, depending upon where they are – maybe just aspirin, depending on where they are with an MPN.

Are there other common things that affect weight related to any of those medicines?

Dr. Ruben Mesa:

It’s a good question. In general, the weight gain has been much more specific to the JAK inhibitors. I can’t say it’s specific to Ruxolitinib, but it really is an effect with JAK inhibitors. Most of those other medicines, hydroxyurea or interferon, don’t have a big impact on weight in terms of gain. Whether that’s in people with myelofibrosis who have lost weight related to the disease, even if they’re on hydroxyurea, they don’t tend to gain some of that weight back. So, myelofibrosis, we do view that some of the weight gain might be beneficial, because some of that weight loss in myelofibrosis is not just fat. It can be muscle. But again, there may be some part that is an extra effect of weight gain from the impact of the drug.

Andrew Schorr:

Okay. Julie Lanford, so let’s talk about managing weight. So, I’ve been – and Julia mentioned it earlier. I mean, I’ve been – no more cookies for me. And I love chocolate chip cookies. So, I’ve had to make changes. How do you coach people through changes, if, let’s say, maybe there’s something related to inhibiting whatever in their body, we have to make changes.

Julie Lanford:

Yeah. So, I will say, I don’t actually keep a scale in my office because I think that a lot of times, you can get kind of distracted on the number. You do know, though – I find many patients know by how their clothes fit, by how they feel. And I think what’s important also is what type of weight is it? Is it muscle weight? Muscle weight’s good, right? Or is it more excess fat? And so, I think balancing those things and really keying in on what are the behaviors that we want you to have, as opposed to what the number on the scale, per se.

But are you able to be physically active that helps maintain muscle mass, and are you choosing those really healthy foods for you? Like Julia was saying, lots of fruits and vegetables, which are really important, not just for weight maintenance, but for overall feeling well and helping to support your immune system, and just overall good health.

Andrew Schorr:

Hm. And so, with this belly that I’ve developed, I had to make a change. I used to have a toasted bagel every morning, Julie. I’m not doing that now. And I put chocolate syrup in this latte machine thing. No more of that. I mean, these are things I’ve had to give up. But I’m having jelly with no sugar in it on a whole wheat waffle, and I’m eating a banana. Am I doing okay doing that?

Julie Lanford:

Yeah. I think – and sometimes, we discount the little things. But I think the little things are sometimes – they make the biggest difference. Because if they are things that you do on a daily basis, and you make a change, it’s gonna have a big impact. Now, you’re talking about your cookies. If you just had a cookie or two once a week, it’s not that big of a deal. But if you were having a cookie after lunch every single day –

Andrew Schorr:

I was.

Julie Lanford:

Then changing that habit – okay. Well then, approved. You can cut back on that. It’s a good choice, right? We don’t want you to completely eliminate it. But really keying in on what are you regular habits, I think, is the most important place to start. And I always encourage people to really pay attention to what they have on their plate, what are the ratios of food that’s on their plate, so that they are getting enough of the nourishing nutrients. And sometimes that helps to, when you make those changes away from the less healthy things; you don’t notice it as much when you’re focused on including more of the healthy things.

Andrew Schorr:

Well, I just want to make one comment. We lived in Europe, some people know, for three years. And the first thing that hit us when we came back to the U.S. is the much bigger portions. And there you are, Ruben – you’re in Texas. Texas-sized food. Or even in California. My mother used to say, “Clean everything on your plate,” but I’m rethinking that, so. Julia Olff, I want to go back to you. So, related to – so, what kind of fruit are you eating? What change have you made? You said fruits and vegetables and organic stuff, too.

Julia Olff:

Well, I have a question in relationship to the conversation that we just had that I wanted to come back to. But I think because of Weight Watchers, my awareness of both weight and nutritional value of food has just heightened. So, one of my big questions in relationship to myelofibrosis that I have tried to adjust but haven’t eliminated – I’m a foodie. I live for food. To me, life – I’m not sure I want another year of life if I can’t have a cookie.

And so, I’ve tried to reduce the amount of fat I take in. And I think I have a lot of questions about salt, sugar, and fat as it relates to having a myeloproliferative neoplasm, being at risk for bleeding, blood clots, etc. But I would say, like you, I have a more structured – my meals are more intentional. So, like you, I have a bowl of fruit for breakfast every single day, and then I try to have something that’s – if I’m going to have a carbohydrate, I try to make it a better carbohydrate. I make use of hardboiled eggs a lot, so I get a little protein, and try to have greens at dinner every night. And a few of them – as a matter of fact, my husband said to me the other week, “Sure, make me a plate.” He was on his way home.

And he came home, and he looked at his plate, and he said, “That’s such a big plate of food.” I said, “Look at the balance. Half of it is vegetables. It’s really not so – it’s not like I’ve stuffed you.” “Oh, okay.”

Andrew Schorr:

So, Ruben, are there some things that in the clinic, you warn people to stay away from? Do you have some general advice, or certain foods, or if somebody’s worried about sludgy blood, where they’re at risk of a stroke, that certain kind of foods or salts or whatever that you warn people about?

Dr. Ruben Mesa:

Well, when it comes to diet and MPNs, I mean, I think there are several levels. And one, let’s say, the general U.S. diet. People kind of eat whatever they want. And that’s probably not healthy for anyone. High in salt, high in fat. It’s a risk for us all in terms of cardiovascular disease, etc. And when you have an MPN, all of those standard risks with cholesterol and sugar and high blood pressure, they’re even a greater concern with MPNS, without question.

But that’s kind of diet one. Diet two, and we can definitely dig into this, regards just trying to eat a healthier diet. And that has different values, whether it’s straight weight loss, or a just a general healthier diet, I think, of which there’s a lot of discussion as to a lot of variations within there. But even just the effort of trying to eat healthier, both in terms of quantity and what you’re eating, has an impact. And there’s finally, the third group, really kind of subspecialized diets, of which I think there is great discussion, but I don’t think that there’s near conformity of should it be gluten-free? Should it be high in protein? Should it be low in protein? Should it be paleo? Should it be this? Should it be that? I think that is more mixed.

But I think for MPN patients, the most particular thing is at least trying to not be in that first group of just kind of the general U.S. just kind of eat food as it comes, fried, salted, really without regard to diet. So, even if MPN patients just followed the diet that we’re all supposed to be following, they probably are in dramatically better shape than just if they’re eating just a general U.S. diet.

Andrew Schorr:

Okay. I want to ask you a couple of things about exercise. So, some people with high blood counts worry that they are certainly at risk of stroke. Should that, during that time, limit the amount of exercise they do for fear that the stuff pumping ever faster through their body is gonna end up with a big blood clot somewhere?

Dr. Ruben Mesa:

Sure. No, that’s a very good question. One, overall, exercise for MPN patients is a very good thing. But clearly, it should be done with kind of the awareness of their physicians. And that in periods of time where the disease is not stable – the counts are too high and uncontrolled, there’s just been an event such as a blood clot or bleeding, clearly there might be times where exercise is not appropriate until things are more balanced and in control. But I’d say once things are balanced and in control, and as long as your healthcare team is aware, appropriate exercise is helpful and important. I think, like any approach to healthy exercise, it’s about gradually working yourself into a specific exercise program. With an MPN, it’s probably not good to do what happens on January 2nd every year, where everyone has a New Years resolution.

And they go from, okay, I’m not exercising at all, to I’m gonna go to Lifetime, and I’m gonna exercise an hour and a half on January 2nd, and absolutely dehydrate myself and exhaust myself, so by January 4th, I’ve quit because I pulled a muscle and I feel terrible. So, it’s clearly about kind of working yourself up to an appropriate level of exercise, in combination with what your doctor feels is appropriate and healthy for you, both in terms of your overall health, but also in terms of where you stand with your MPN.

Andrew Schorr:

Mm-hmm. So, Julie, you’re nodding your head. How have you carried on with exercise? Walking the dog, but what other kinds of things?

Julie Lanford:

Well, I wanted to add, as I’m listening to Dr. Mesa, that pacing is so important. Because I find it catches up with me. I could sleep, on average night, nine, ten hours, and I have to push myself out of bed in the morning.

 So, yesterday, I had an evening meeting. I took a long walk. And in the moment, I’m okay, but by the evening, I start to feel achy. I need to put my feet up. The bone pain in my hips starts to kick in. So, there’s that balance of trying to get out as much as possible. So, for me, it’s taking advantage of the sun outside my window. And I’m already thinking, as soon as we’re done with this call, I’m gonna take another short walk. But it’s also trying to balance it, because too much activity when you have constant fatigue just catches up with you. And I find I end up having those acute bouts of illness when I’ve done too much for a sustained – like for a couple of months.

Dr. Ruben Mesa:

If I might just add one additional thing. That pacing thing, I think, is so important.

As I told you, I’ve had many patients over the years who are very Type A. Some of them will be on this webinar as we speak.

Julie Lanford:


Dr. Ruben Mesa:

And they’re very hard on themselves because they remember, well, before my MPN, I was able to exercise this amount, and beat themselves up because they just don’t have the same stamina that they did before. And it’s okay. It’s okay to realize that the new normal does not necessarily mean that you have 100 percent of the capacity that you had before in terms of your exercise capability, and that even though it’s modified, or less, or adjusted accordingly, it’s still great that you’re doing it.

Andrew Schorr:

Right. I have a story about that I’ll just share. So, as we do this program, it’s just after Thanksgiving. So, there was a Turkey Trot, as there were in many places around the country, in Balboa Park on the north side of LA.

My son, Ari, won it. He’s a really fast marathoner. But Esther and I ran it, and Esther and I were running together slowly. And I found I was huffing and puffing, and I’ve run eight marathons, many years ago. And I just said, “You know, I just want to finish.” And Esther went ahead. She did really well. Congratulations, Esther. And then my son who ran the race came back and ran the last mile with me. So, it was a 5k, so a little over three miles. I felt great that I did it. I felt disappointed that I couldn’t do what I used to. But I did it. And I think it’s exactly what you’re saying, Ruben. So, Julie Lanford, are there certain foods or things we can do that will give us more energy, and some things that are just a waste?

Julie Lanford:

So, I would say that we do want to focus on foods. There’s no supplements. Unless you’re deficient in a nutrient, there’s no reason to take pill forms of nutrition.

So, we do want to focus on the foods. And there are certain patterns of eating that we know are particular healthy, and certain patterns that are not so healthy. We’ve talked about the typical American kind of eats a pattern that’s not so healthy. And when it comes to fatigue, I would say similar types of foods as we want for an overall healthy diet. But I think it’s really key that people not wait too long to eat, so that they’re – just like your pacing, everything else in your day, you want to make sure that you are eating regularly throughout the day so that you never get real low on energy in terms of nutrition.

And also, really making sure that you have a good balance of foods at your mealtimes and at your snack times. So, you want to make sure you have a healthy carbohydrate, because that’s what can really give your brain and your muscles energy. You want to make sure you have a good balance of proteins. They can come from plant proteins or animal proteins. But make sure that your meals and snacks have an adequate amount of protein.

And then, of course, some fruits and vegetables and other things. But really getting that balance, and also not going too long between when you eat, so that you can consistently give your body that energy that it needs. Even if it’s smaller amounts at a time, it’s spread out throughout the day regularly.

Andrew Schorr:

So, when I went to summer camp as a kid, they had us eat candy bars if we were low on energy. And we’re talking about carbohydrates. So, kick off a couple of specifics that you would recommend that we should – snacks, for instance.

Julie Lanford:

Yeah. So, probably wouldn’t recommend a candy bar, per se, on a regular basis. But things like peanut butter crackers, if you can buy just good old whole grain crackers and peanut butter and put them on there, that can be easy. Even a peanut butter sandwich is really simple. Peanut butter and banana. People around here eat that. I think it’s delicious. Soups can be easy things that are kept either in the fridge – that’s easy to heat up.

Because that’s the other thing with fatigue. You don’t feel like cooking, so you want to make sure that you have sort of meal-sized portions in your fridge ready to eat. That’s what friends and family can kind of do for you. So, even just small meals. If it’s spaghetti, if it’s a piece of pizza that you put lots of vegetables on. I think fruit is great as a source of healthy carbohydrates. If you had fruit and a cheese stick, or even if you made yourself some sort of healthy smoothie, just something that’s going to give you that balance of nutrients.

Andrew Schorr:

Yeah. You mentioned something, and Julie, I don’t know if you do it. We had started to – I love leftovers. And so, we’ve been trying to make healthy stuff, put it in the fridge where I can grab for lunch. Or this morning, Esther made a big thing of steel-cut oatmeal. And so, now I can have that as part of my breakfast. So, Julie, is that – are we on the right track?

Julie Lanford:

Yeah, that’s great. And something that’s really popular right now is overnight oats. So, you can soak your oats in milk or whatever or whatever you want to use for a liquid, and it’s in a jar, or it’s in a container in the fridge all night, so it gets soft, so it cooks really quickly in the morning in the microwave. So, yeah, I think that’s a great way – there are lots of grains you could use for breakfast cereals, too. Barley is another grain. Quinoa. And essentially, you cook it the same as you would oatmeal. Flavor it the same way, and it just gives it variety if you’re looking for something different.

Andrew Schorr:

Julia, how’s that sound to you?

Julia Olff:

I’m not a big hot cereal fan, so I have two breakfasts that I go back and forth from. One is – I love Cheerios, and I just read how much sugar there was in Honeynut Cheerios, so I’m mixing plain Cheerios now with Honeynut Cheerios, and then I add a lot of fruit to it. Or I do a whole grain muffin with half a hardboiled egg, which makes me miss my dog, because I always gave him the other half of the egg.

Andrew Schorr:

I have a blood count question for you with myelofibrosis. How are your platelets?

Julia Olff:

For me?

Andrew Schorr:


Julia Olff:

They are – since I started Jakafi, they’ve controlled like they have never, ever been, or not in a decade. So, they’re probably between 250 and 300, I would say.

Andrew Schorr:

Oh boy. Okay.

Julia Olff:

Yeah. I’ve got platelets to spare.

Andrew Schorr:

Well, I would take some. So – and Ruben knows this about me. So, my platelets have traditionally been low, and they got as low as a few months ago, 40,000. And now I’ve been doing through treatment, actually, for this other condition I’ve had, chronic lymphocytic leukemia, and they were up to about 100. Ruben, one of the things I was told by my doctors was don’t do contact sports, because my spleen was getting larger, and also, I had low platelets.

So, what about the kind of exercise you do if your platelets are lower? What’s your thought about that?

Dr. Ruben Mesa:

Well, I would say that, barring extremely low platelets, i.e., under 15,000, most routine forms of exercise that are cardiovascular, that are elliptical machines, that are weight-lifting, others sorts of things – all of those sorts of things are fine. I think the sports that one would probably avoid with either of those situations is truly kind of contact teams sports – rugby, football, etc., where there’s very significant contact. Down here in Texas, I certainly have seen people riding the mechanical bull. I’m not sure that’s a good idea for anybody, but those sorts of extreme things. There is a bit of a misperception regarding the spleen and it being fragile with MPNs.

It sometimes makes people a little too fearful of doing exercise. The spleen enlarged with acute illnesses from a virus, most commonly mononucleosis or mono, is an area where the spleen grows very quickly. It’s very fragile. And constantly, you hear about people having their spleens rupture with playing volleyball, or football, or what have you. And in MPNs, that really is much less of a case. It’s not nearly as fragile. And it really – it’s not a concern for rupture with all the sorts of normal routine things one would do as an individual with exercise.

Andrew Schorr:

Okay. So, Julia, have you had any worries about the kind of exercise you would do related to your condition, whether you’re gonna have a stroke, or bleeding, or maybe not bleeding, but other complications?

Julia Olff:

I think right after the TIA, and I can’t remember for how long, but maybe for a few months, I was feeling cautious about movement. And my platelets were not yet under control, so I was dizzy. And then they put me on Plavix as well, so that was sort of making it hard to do a lot physically anyway. Since being on Jakafi, having my counts much more controlled and having more energy from Jakafi, I don’t think I – I’m frankly jealous of other people that can do real exercise. I see people run past my window, joggers, etc. But I don’t feel like I have the energy to do that. So, for me, walking is really – walking and walking up steps are my physical activities. And the trips that my husband and I have taken really involve walking and the occasional swim in places that – you’re in sunny California, so maybe you have a pool. But, you know.

Andrew Schorr:

I have an ocean.

Julia Olff:

Yeah, and an ocean. That’s a lot of – to go into an ocean and deal with the forces of the waves, etc. To me, that would be too exhausting. So, I’m sticking with walking. That’s . . .

Andrew Schorr:

Yeah. Let me make a comment about exercise, just because I’ve been doing it for many years. So, yeah, after the marathons and all that. Esther and I go to the gym every day. And we joined one of these ones that’s open day and night. And we go, whatever our schedule is, and I get on the elliptical, and I do what I can. I watch the news, which maybe is a good thing or a bad thing. But at any rate – and I don’t beat myself up about how I did compared to the day before, or the month before, or whatever. But I just do it. And then sometimes, we run, and then we work in biking. So, that’s what we do.

And I would really urge people, because Julia, wouldn’t you agree, there’s a whole psychological benefit to just exercising or getting out there too?

Julia Olff:

Absolutely. And I know Dr. Mesa will – I’ve heard him talk about this, and I certainly read about, try to keep up to date, just talking about the news, about health information sources that reiterate things like getting yourself out. There’s something about stepping outside, and if you have some sunshine, and feeling that that helps, even when I don’t feel well. So, I feel like I always want to get out and move a little bit. And I just try to pace myself. And Julie was saying earlier, and I was thinking about there’s the physical activity, and there’s the amount of time I stand. I love to cook, so for me, being in the kitchen at 4:00 in the afternoon and making a two-hour recipe is a lot of fun.

But it starts to wear on me. And so, standing is a kind of form of exercise that you forget about.

Andrew Schorr:

Do you have a recipe you think – you enjoy making, and it’s an affirmation of better health for you? Something that you feel –

Julia Olff:


Andrew Schorr:

What’s that?

Julia Olff:

I think the roasting vegetables. So, every vegetable tastes better roasted, I think. And I roast just about everything. And it’s so easy, because you can flip the oven onto 400 and go about your business. Once you’ve mixed with vegetables, Brussels sprouts, broccoli, different kinds of earthy potatoes, sweet potatoes, and olive oil. Light on the salt, pepper, garlic. And it’s good stuff, and it’s easy.

Andrew Schorr:

Okay, Julie, I have some questions for you, because again, it’s in my daily life, maybe others.

And if you all out there in online video land have questions, please send them to, and our producer Jamie’s gonna forward some to me, and we’ll pose them before the end of the hour. So, Julie, we cook some things in a wok, and we cut up vegetables. And but my wife has started us using a little bit of something called ghee, which I think is clarified butter. So, how do you feel about that? Or should we be using some other oil instead?

Julie Lanford:

So, when it comes to fats, we like for people to have more of the unsaturated, sort of heart healthy fats, is what we think of, and less of the saturated animal fats. Less of doesn’t mean none. And so, there’s certainly room. I would say ghee and butter are similar in terms of their saturated fat content, as is coconut oil, which sort of has this health halo right now, but it’s still a saturated fat.

So, what I would tell you is it depends on the recipe. If it requires that you use a solid fat in order for the recipe to work, then I would use it. If you can use olive oil instead, or canola oil, or peanut oil, I would choose those. And so, as long as you’re getting a variety. But if you’re always using butter or coconut oil, or if you are somebody who heard coconut oil was healthy and switched from olive oil to coconut oil, we wouldn’t really recommend that. So, it’s really more about the balance, and also how much of it you use. Now, if people are using it so that they will eat vegetables, I think that it’s still an overall gain, because we want people to eat vegetables. And talking about roasted vegetables, nobody’s gonna eat something if it doesn’t taste good. I don’t care how healthy it is. So, we need for you to figure out ways that make healthy food taste good. And so, we try to balance that when we’re giving those recommendations, but you know.

Andrew Schorr:

Okay. I’m gonna skip back to exercise for a minute, related to sort of mindfulness as well. So, Julia, you told me that you were actually in a yoga study. Is that right?

Julia Olff:

Yes, one that Arizona State and Dr. Mesa’s team was running. I was in a control group, so I didn’t get to initially participate, but they were – and hopefully, Dr. Mesa will share the results, but they were looking at the benefits of yoga for people with MPNs.

Andrew Schorr:

Okay. What about it, Dr. Mesa?

Dr. Ruben Mesa:

So, yoga is something that has been found to be helpful in a variety of diseases. And in particular, it’s been primarily studied in breast cancer. So, we wanted to help to demonstrate really several things as an evolving arc with my colleague Jennifer Huberty that leads kind of this exercise research activity at Arizona State.

So, one, we wanted to prove that yoga can be helpful, that yoga has several components, both physical activity as well as a meditation component. And we wanted it to be something that people could utilize really at their homes. And much of the yoga research done in cancer patients or others has been a bit artificial, with people having to travel into the city to go to a center that wasn’t very feasible. So, we’ve completed two studies and seek funding from the National Cancer Institute for the third. The first study, we developed a series of yoga modules to be done at home, in partnership with an online yoga instruction company called Udaya. And what they do is they develop yoga modules to have people do yoga at home. Well, we taught them about MPNs over a couple day period of time. And they created some modified yoga specific for MPN patients.

So, the first study we had was a feasibility study, which we published in the medical literature, where we showed that in about 30 patients, we found that they could figure out how to use the modules, that they used them, that they could use them safely. But whether there was really feasibility – is it feasible? And in that small group, we were able to show that there was also some benefits. They felt better, they felt better, they slept better, they had improvements in fatigue, etc.

The second study was the study that she just mentioned, that was yoga versus a control, where people were on a waitlist, and then after the period of time, they then could use the modules.

And in that study period comparing the two, in addition to measuring the impact of the yoga, we also were measuring blood levels of different levels of inflammation-related proteins or cytokines in the blood to see what sort of impact, in addition to sleep, fatigue, symptoms was having on the biology of issues of inflammation. And we’ll be presenting next week at the American Society of Hematology some of those results. But what we found is, one, not surprisingly, we think yoga is helpful. And it helped with fatigue. It helped with issues of mood and depression. And I think consistent with what’s being seen in other areas, one of the major benefits of yoga might be enhanced sleep. It is one of those potential benefits of yoga. Two, there are, again, the two components. There’s really an activity part with the poses and things of that nature, and is that better or worse than doing an elliptical machine? I don’t think that’s been studied.

But there’s that part. But then there’s really also a meditative part that includes breathing, balance, etc. So, I think there’s a variety of parts, and we’re working to study these different parts. We’re looking to study, how do we take people who have really not been active before? How do you get started in yoga is a little different than having people that have already been fit in the past, and really look to better understand these things so that we can really move to a place where they can be a resource for MPN patients, but also so that physicians know how to recommend or utilize tools like yoga for appropriate patients.

Andrew Schorr:

Yeah, I can’t wait to hear more about it at the ASH conference that’s coming up. And we’ll be covering it, so we’ll look for that. So, we started getting some questions. This one’s from Susan. In recognizing that there will be some patients who will need a stem cell transplant with myelofibrosis, we might progress to that.

And certainly, I know people like that. Julia, you may too. So, two questions about that, Ruben. One is, is there some physical conditioning you should do if you know you’re gonna be headed for a transplant? And second of all, what about recovery? In other words, will you do better with a transplant if you’re in better shape, and how can exercise be used to help you recover from the transplant?

Dr. Ruben Mesa:

Both are very good questions. Without question, physical activity with transplant is important. And people that go into a transplant stronger are clearly better off. But that clearly needs to be balanced with their physicians. What we clearly wouldn’t want is someone kind of wearing themselves out or trying to tackle too much in terms of exercise before a transplant either. You really want to go in kind of the best shape that you can.

Second, most transplant programs now really do try to, even during the process of transplant, try to maintain people’s strength the best they can. That might include everything from activities that are there in the hospital room or at the hospital. I’ve seen everything from kind of modified elliptical machines that you do while sitting down to other things. Without question, there will be days during the transplant people just don’t feel well enough to do that, and that’s fine. But the more days that people are active, really probably the better off they are. And on the backend, without question, whenever you have a very significant health intervention – I don’t care whether it’s a surgery, clearly a bone marrow transplant, anything that’s very dramatic like that, the process of active recovery, it’s a real process that, again, you’re starting a bit from scratch because you’re set back a bit with clearly going through a process like that.

But active recovery is key. People sometimes think, well, I had this big surgery, and it could be breast cancer. It could be a bone marrow transplant. And they think at the tail end, when they’re done, that they’re just gonna kind of bounce back to be exactly the way they were before when they started. And unfortunately, that’s not the way the body walks. You really have to kind of build that level of fitness back up again.

Andrew Schorr:

Hm. Okay. We’re getting questions about being a vegetarian. Grant wrote in and wonders – and I’ll pose this to you, Dr. Mesa, and also to Julie – Grant wants to know, is there any benefit to being a vegan or vegetarian when you have PV?

Dr. Ruben Mesa:

So, it’s a good question. I’d say, in short, I don’t think that there’s any evidence to suggest that you’re better off being a vegan or a vegetarian versus having a good healthy diet.

Are you better off being a vegan or a vegetarian than kind of a general U.S. fatty, salty, fried diet? Oh, absolutely. But compared to a general diet that has appropriate meat, and fish, and eggs, and other things, I wouldn’t say that there’s necessarily a big difference. Now, with PV, there’s always the issue of iron. When we do phlebotomies, part of the reason phlebotomies help to keep the blood counts controlled, specifically the red blood cells, is by making an individual iron deficient. And medicine sometimes can alleviate that, but it’s making people iron deficient. So, if you eat a lot of iron in your diet, particularly iron supplements, you’re really working at cross-purposes. You’re taking iron out by phlebotomy, but then you’re giving iron back in by a supplement. Doesn’t make a lot of sense. The amount of iron in the normal or a healthy diet is modest enough that we have not recommended the individuals to specifically avoid meat or natural food-based sources of iron.

We’re not trying to build their iron levels up, but nor do they need to have draconian avoidance of meat or iron in their diet. But no iron supplements.

Andrew Schorr:

Okay. And just so we know, Julie, was it spinach? Or what are some of the foods people often eat when they’re trying to boost their iron?

Julie Lanford:

So, the typical foods that we think of as really high iron foods are going to be more animal-based. Clearly, liver is sort of one of the top sources. Not many people eat a lot of that. But even clams, mussels, oysters, cooked beef tend to be the things that people think of. When it comes to the plant sources of foods and iron, they’re just not absorbed as easily. And there’s usually other factors that sort of inhibit the absorption of iron.

So, cooked spinach is usually picked up on as well, because you know what happens when you take a lot of spinach and you cook it, and it’s like down to nothing. Well, you’re eating a lot of spinach when you eat it when it’s cooked. So, those are things that I wouldn’t be particularly concerned about, unless your doctor has said you need to pay attention to your iron sources. What I would say when it comes to vegetarian diets, vegetarians tend to have better health outcomes because of that eating pattern of having more vegetables and plant foods in their diet, which has a lot of great nutrients. I think you can eat a plant-based diet that still includes meat if you want to. You don’t have to. It’s a pretty wide range of what we would consider to be healthy eating. But you would want to make sure that you’re getting labs checked. Plus, the nice thing about going to the doctor all the time is that they do kind of stay on top of your labs, so you would pick up if you’re becoming deficient in something.

For vegans, we focus on B12. It takes a long time to become deficient, but that can also sort of play into anemias and things. So, you would just want to keep an eye on that. I don’t promote a vegan diet, but I think if somebody wants to follow a vegan diet, I’m perfectly happy for them to do that, as long as they’re monitoring their labs.

Andrew Schorr:

So, Dr. Mesa, and well, Julia, I’ll ask you first. Julia, did you make any changes when you were diagnosed with what became known as a cancer? Like in my case, Esther had us getting distilled water at the house. But I mean, did you do anything like that? She had me stop drinking coffee. I don’t mean to blame Esther. We lived in Seattle, where Starbucks came from, but we made challenges. Oh my god, does that have something to do with the cancer.

Julia Olff:

Right. I don’t remember then making any significant changes. I do feel like over time, and the more often I’m hospitalized, the more kind of militant I get about avoiding things that make me sicker, like cigarette smoke. Hate walking down the street and having to suck in someone else’s smoke. But dietarily, I just try to have organic vegetables. We have a filter – we do have a filtered water system in the house. Just try to avoid poisons or toxins as much as possible. You mentioned coffee, though, and I wondered what – there’s more research in general out there about the benefits of coffee. For me, coffee, I consider it to be part of my medication regimen. And I’m barely functional until I have that first cup. I literally come down and have a cup of coffee to shower. And I wonder if there’s – if others feel the same way.

Andrew Schorr:

So, Julie, what about caffeine? And also, could you say something about wine, too? Because beer – so many different things. Drink wine, don’t. Red wine, white wine. This leads to cancer. Who knows?

Julie Lanford:

Yeah. Everything, right? So, when you look at actual data – and I rely a lot on the American Institute for Cancer Research, who reviews every study that’s been done. And so, they come up with great recommendations and very commonsense, so I like that. They have tea. So, a lot of people have heard green tea is really good. So, yes, it is. But they also have coffee on their list. Now, the way you have the coffee – Andrew mentioned earlier, syrup in it – that’s why I tell people, if you go to Starbucks and you get four pumps of syrup in your whole milk with whipped cream on top mocha, that’s a dessert. But if you just brew coffee at home, and you put a little bit – I just use milk for mine – that’s perfectly healthy.

And it does have plant nutrients that are good for you. So, I consider it healthy. If you’re sensitive to caffeine and you know that it keeps you up, or whatever, you can get decaf. Or if you just don’t like coffee, drinking tea can give you great benefits as well. When it comes to alcohol, we do know that alcohol increases risk for cancer. I will say, that’s when you drink it regularly. So, that’s when we see people exceeding what we recommend as moderation. And so, if you don’t know the definition of moderation, I’ll teach you that. One drink a day for women, two drinks a day for men. I know, it seems not fair to us women. But that’s what we would say is moderation, and you don’t get to save those up for the weekend. Just because you’ve missed it all week, you don’t load up on the weekend and expect that to also meet the definition of moderation. But if you’re less than that, we consider it to be fine. Although when they said that red wine was good for the heart, they sort of backed away from that more recently.

 It’s the skin of the red grape that’s really good for you. So, it turns out, you can eat grapes. So, that’s my point on that.

Andrew Schorr:

Good advice. Dr. Mesa, we’ve gotten in a couple of questions I wanted to pose to you. One is from Dave and Karen. It says, does exercising affect blood test levels in any aspect? So, let’s say you were a runner, or biked, or went to the gym or something, on the day you were then gonna come to your clinic for a blood test, would the blood test be accurate or changed based on the exercise you just did?

Dr. Ruben Mesa:

It probably does impact it to a modest degree. Probably not to a significant degree. So, it might slightly increase the white cell count or the platelet count in kind of that immediate post-exercise period. And clearly, if someone were to be dehydrated, that will make the red blood cell count seem a little bit higher as well.

So, it can kind of both concentrate the blood a little bit, if you’re dehydrated, as well as if it’s really significant exercise and leads to any inflammation, might slightly boost up the white cell count or the platelet count. But again, talking modest levels. A 350 platelet count going to 400, not 350 going to 1.2 million. So, modest increases.

Andrew Schorr:

Right. And all the doctors have told me, you all look at the trends.

Dr. Ruben Mesa:

Correct. Correct. Absolutely. And for most regular spurts of going to the gym exercise, probably it’s not even noticeable. But if somebody again did an Iron Man triathlon, you’re gonna notice changes in the blood.

Andrew Schorr:

Okay. Well, here’s a guy who’s pretty busy. Mark writes in. He says, I do an hour and a half every morning, stretches, planks, yoga, and even sun salutations. Sometimes I feel slight strain in my large spleen, but it’s never severe and always goes away.

So, he says, on a one to ten scale, Dr. Mesa, how much am I endangering myself, if at all?

Dr. Ruben Mesa:

You know, probably a two out of ten, from what it sounds like. Again, it may be more muscle strain, and it probably really isn’t injury of the spleen. But again, this particular activity that really causes muscle strain in that area, I would probably just modify the activity. Again, a very enlarged spleen is different anatomy than even we were kind of built to have. It’s much larger than normal. It’s asymmetric, so accommodating your exercise for that is appropriate. I would probably look at modifying the stretches if the stretches are irritating that.

Andrew Schorr:

Mm-hmm. Okay. So, one of the things I’ll just point out to people – and you mentioned it earlier, Dr. Mesa – is have a conversation with your doctor about where you are, how you’re feeling, what medicines you’re taking, what you like to eat.

And there are people who can help – now, Julie, you have a website where people can send in questions to you. What’s that website?

Julie Lanford:

Yeah. It is, and it’s part of our nonprofit, so there’s no fees or anything.

Andrew Schorr:

Okay. Now, that’s very helpful. So, Julia, do you recognize that we with an MPN are sort of a moving target? That whatever is normal or feels good to us may change over time. We have to accept that, but that’s part of our dialogue with our healthcare team as to exercise, diet, medication, what’s right for us at that, point? It’s not static.

Julie Olff:


Andrew Schorr:

I feel that. And that’s where my dialogue is with my doctor. So, just one last thing. I want to make sure I heard you right, Ruben.

So, contact sports – so, should I worry about biking if my platelets have been lower? That I’m gonna have some accident and I’m gonna bleed to death on the road or something?

Dr. Ruben Mesa:

Well, I would say, with 40,000 platelets, I probably would not do kind of the off-road trail cycling with high likelihood of running into rocks or things like that in Arizona, where it can be a bit treacherous. But if you’re really thinking about more gentle cycling, road cycling, particularly if you – and appropriately – are wearing a helmet, it’s probably fine still at that range. At 40,000 platelets, most individuals, even with fairly significant trauma, will still have the same reasonable clotting as other individuals. One probably could have emergency surgery at that level, barring really extreme trauma.

Andrew Schorr:

Okay. And the reverse is, if you had really high platelets, and you’re worried about stroke and other things like that, you’re still not worried that somebody’s gonna run around the block, and that’s gonna put them over the edge?

Dr. Ruben Mesa:

I think that’s highly unlikely, without question. Again, whether they’re high and they need treatment or don’t need treatment, clearly it’s a discussion between the patient and their physician. But in general, appropriate exercise with adequate hydration, or clearly exercise that people have really evolved into, as opposed to a dramatic change in activity level, is usually quite safe.

Andrew Schorr:

Okay. Well, I’m gonna try to work yoga into what I do. My balance is terrible, but I’m gonna try to do – what is it, downward dog, if I can. And they do it my gym, so I’m gonna try that. And Julie, just as far as diet goes, people can write you.

And again,, right?

Julie Landon:


Andrew Schorr:

And I think, again, I mean, it sounds like a broken record, but we talk about the healthy diet, fruits, vegetables, some protein, some meat balance, and not crazy about supplements, right?

Julie Landon:

Right, yeah. Unless there’s a reason that you would need a supplement, I don’t think that the general person just needs to be on one. If you like the idea, a multivitamin that should not break your bank would be fine, and you could even do that every other day, and still, it’d be fine. But it’s not necessary, as far as I’m concerned.

Andrew Schorr:

Well, I want to thank both of you for being with us. So, Julia, as we wrap up, and you’ve been listening as a patient as well and living it, what do you take away from this?

Julia Olff:

I guess I’m thinking about it very personally, that I feel like I’m on the right track. I’m trying to do as much as I can to be well,  and to be well around a disease that we can’t control.

Andrew Schorr:

Right. Well, I have a great – I think, for all of us. I have a good medical team. People like Dr. Mesa, people that may be at your clinic, like Julie, who can help with diet. Social workers as well. And also, you said it earlier, Ruben – accept that normal for you changes, that we do have a condition. I mean, we even refer to people with extreme interventions like a transplant, that you’re in a recovery mode, and you do what you can. And but doing something is a benefit.

I want to thank you all. Dr. Ruben Mesa, I’m gonna see you at ASH coming up. And Ruben, thank you so much for joining us, once again.

Dr. Ruben Mesa:

A great pleasure to be here. Thank you. Great discussion.

Andrew Schorr:

Okay. And Ruben, thanks for your devotion to all of us and to research. We really appreciate it. Julie Lanford with Cancer Services in Winston-Salem, North Carolina, where I spent like 12 years of my life, in North Carolina, thank you so much for being with us, once again.

Julie Lanford:

Thank you for having me. It’s been great.

Andrew Schorr:

And Julia, I’ll see you back in New York City one of these days.

Julie Olff:

All right.

Andrew Schorr:

But I want to wish you all the best. And you and I are on a journey with myelofibrosis now. But every day is special. But we hope we have a lot of them. And enjoy your family and your grandchild. What is her name, Elaina?

Julie Olff:

Elaina. Yes, I’ll see her for the holidays.

Andrew Schorr:

I’m looking for grandchildren, so you can give me pointers. But all the best to you.

Julie Olff:

It’s fun.

Andrew Schorr:

Yeah. Thank you so much.

Julie Olff:

You get to give them back.

Andrew Schorr:

Yeah. Thank you so much for being with us. And I just want to mention to our audience, Dr. Mesa referred to it, the kind of World Series of blood-related conditions is the American Society of Hematology. And there’ll be 25,000-plus people there.

And we’ll be there with our team, getting the latest information and bringing it to you, even some live broadcasting. So, if you are not a member of patient power, go to, sign up for the ASH daily updates. And whatever there is about MPNs, we’re gonna bring it to you. And there will be a replay of this Patient Empowerment Network program coming soon that you can share and go over again. Thank you so much for joining us. We wish everybody the best of health. Go out there and do what exercise that you can. A little more is probably better. And think of yoga, and also that balanced diet. I’m Andrew Schorr in Carlsbad, California, feeling good about things. Remember, knowledge can be the best medicine of all.

digital sherpa™ Press Release

Digital Sherpa™ Press Release

Media Advisory

Two upcoming digital sherpa™ Workshops offer unique support to

local cancer patients

Fort Myers, FL – March 9, 2017… In partnership with Patient Empowerment Network (PEN) and Florida Gulf Coast University (FGCU), Florida Cancer Specialists & Research Institute (FCS) is pleased to announce two upcoming digital sherpa™ Workshops on Thursday, March 16, 2017 and Thursday, April 27, 2017 at its Gladiolus Cancer Center (8260 Gladiolus Drive, Fort Myers, FL). The workshops are open to FCS patients, caregivers and friends.

Hosted by PEN, the digital sherpa™ Program aims to help cancer patients and their families become more tech-savvy. The program’s workshops educate patients and caregivers in basic internet and social media skills to help them in their search for information about their illness and support for them and their families.

Cancer patients, known as “climbers” in the program, are paired with FGCU students, known as “sherpas”, who have been specially trained by PEN to offer skills such as:

  • Internet use (such as opening an email account, navigating Google, and creating and remembering passwords)
  • Social media skills (including Facebook, Twitter and Instagram)
  • Creating virtual connections with other cancer patients via on-line patient support communities
  • How to use apps such as Uber and other ride-share services to get to appointments

Research suggests that many older cancer patients lack basic internet and social media skills which creates an obstacle for them when they try to go on-line to access information about their illness, or support from other patients and patient advocacy groups.[i] Often they become overwhelmed with the abundance of information and do not know how or where to find the help they need.

“By producing this program, we want to show what can be done to help cancer patients and their families become more tech-savvy, more educated, more self-confident and more in control of their cancer journey,” said Joan Justice, PEN’s Executive Director.  “By pairing digital natives (FGCU students) with the older generation, we hope to create an empathetic and powerful relationship that is an asset to any community.”

“We are pleased to partner with PEN and FGCU to offer this innovative program to our patients,” said FCS CEO Bradley Prechtl. “Ensuring that our patients and their families know how to access helpful information online is a big plus.”

Dr. William Harwin, Founder and President of Florida Cancer Specialists, added, “Our collaboration with PEN and FGCU to provide this unique program reflects our mission of patient-centered care. The more education we can provide to patients, their families and caregivers, the better equipped they are to be active participants in their own healthcare.”

“The digital sherpa™ Program is beneficial to both the cancer patients and the Florida Gulf Coast University students involved.  The patients gain technological knowledge that connects them with up-to-date information pertaining to early detection or successful treatments; the FGCU students acquire valuable and transferrable skills such as the ability to communicate effectively, problem solve, and build relationships – which was the best part of all!” said Jessica Rhea, Director of Community Engagement at Florida Gulf Coast University.

“I enjoyed the casual, fun atmosphere and being able to ask the students about the technology questions I have rather than having to ask my children for help,” said one Digital “Climber” following a recent workshop.

The Climber’s Digital “sherpa” added, “The barrier of age was broken between us. I loved the connection and bond we made!”

Workshops will be held on March 16 and April 27 from 2:30-4:30PM at Florida Cancer Specialists and Research Institute, 8260 Gladiolus Drive, Fort Myers, FL 33908.


About Patient Empowerment Network

Our mission is to fortify cancer patients and caregivers globally with knowledge and tools, boosting their confidence and putting them in control of their healthcare journey and assisting them to get the state-of-the-art, personalized care they deserve. For more information, please visit our website

Watch our video to learn more about the digital sherpa™ Program

About Florida Cancer Specialists & Research Institute:

Founded in 1984, Florida Cancer Specialists & Research Institute (FCS) is the largest independent medical oncology/hematology practice in the United States. With over 200 physicians, 160 nurse practitioners and physician assistants and nearly 100 locations in our network, we are committed to providing world-class cancer care in community-based settings close to home.

Recognized by the American Society of Clinical Oncology (ASCO) with a national Clinical Trials Participation Award, FCS offers patients access to more clinical trials than any private oncology practice in Florida. 84% of new cancer drugs approved in 2016 for use in the U.S. were studied in clinical trials conducted with FCS participation*. Our physicians are consistently ranked nationally as Top Doctors by U.S. News & World Report Trained in such prestigious medical schools and research institutes as Duke, Stanford, Harvard, Emory, M.D. Anderson, and Memorial Sloan-Kettering, the physicians of Florida Cancer Specialists provide leadership and consultation in the state’s leading hospitals.

FCS serves patients on the Gulf Coast from Naples to the greater Tampa Bay area, north as far as Tallahassee, in Orlando and surrounding Central Florida communities, and on the East Coast in Daytona/Palm Coast, Vero Beach/Sebastian and in Palm Beach County.

Florida Cancer Specialists has built a national reputation for excellence that is reflected in exceptional and compassionate patient care, driven by innovative clinical research and cutting-edge technologies that help advance targeted treatments and genetically-based immunotherapies, and embodied by our outstanding team of highly-trained and dedicated physicians, clinicians and staff.

 *Prior to approval

Established to fill a regional need for higher education opportunities in Southwest Florida, FGCU has flourished since opening its first classrooms in 1997, and now attracts students from all over the United States and abroad to Fort Myers. The university has achieved national prominence in academics, environmental sustainability and service-learning as well as in athletics, where FGCU earned the nickname “Dunk City” during its historic run in the 2013 NCAA Men’s Basketball Championship Tournament. FGCU’s unique natural setting between the Florida Everglades and the Gulf of Mexico creates a living laboratory and a lively campus interwoven with native flora and fauna. It also provides an engaging home to a diverse community of more than 15,000 undergraduate and graduate students who advance their learning in state-of-the-art classrooms and labs; they collaborate with faculty to produce new knowledge that benefits the environment, education and community life.

For Media Inquiries please contact: 

Patient Empowerment Network

Andrea Conners, Programs Director


Florida Cancer Specialists & Research Institute

Shelly Glenn, Chief Marketing & Sales Officer


Chappell Roberts

Chris Wilkerson


Ganick Communications, Inc.

Elaine Ganick



[i] Smith, Aaron. (2014) Older Adults and Technology Use. Pew Research Center