MPN Whole Patient Support Archives

MPN can unleash a whirlwind of unexpected emotions and experiences for patients and care partners. You are more than just a patient; more than just a treatment plan.

Whether your concerns are physical, emotional, nutritional, or spiritual, we can help.

More resources for Myeloproliferative Neoplasms (MPN) Whole Patient Support from Patient Empowerment Network.

Four-Legged Physicians: How Dogs Can Aid Patient Therapy

Dogs and humans have shared a special bond for over 12,000 years.  Clinical research has shown that dogs increase quality of life, finding that those living alone with a dog have a 33% decreased risk of death.  A study published by the Complementary Health Practice Review also found that pet owners are likely to have lower blood pressure, better cognitive function, and decreased anxiety than their non-pet owning counterparts. For those fighting along term or chronic illness, spending time with a dog can have broad health benefits for both the body and the mind.

Mental Health

A long term hospital stay is difficult for patients, particularly those in critical care units.  Even physicians with exceptional bedside manner can only do so much to mitigate the clinical nature of a hospital room. A study published in Critical Care shows that animal therapy can help ICU patients overcome the mental health issues associated with an extended hospital stay.  Bringing in a dog to engage with patients breaks up the monotony of the hospital, and improves mood. 74% of pet owners report improvements in mental health, showing that dogs lessen feelings of loneliness and isolation.

Dementia And Alzheimer’s

Patients in nursing homes go through many of the same problems as those battling in an ICU.  Nursing homes pose a particularly great challenge for those with dementia and Alzheimers, as unfamiliar settings and faces can cause distress.  A promising study published in the American Journal of Alzheimer’s Disease and Other Dementias shows that dementia patients enrolled in animal-assisted therapy had decreased levels of agitation and greater social interaction than a control group.  Notably, many of the patients involved in the study had owned dogs in the past.  A key part of treating dementia-type disorders is involving patients in activities that they have enjoyed over the course of their life.  For animal lovers in nursing homes, playing with a dog for even a few hours a week can have a massive impact on their quality of life.

Exercise And Physical Fitness

Most dogs are seemingly boundless, furry balls of energy – particularly high energy, social breeds such as Black German Shepherds. Walking and playing with a high energy dog is necessary for their happiness, and comes with the obvious benefit of weight loss and a decreased chance of diabetes for people as well.  The benefits of playing with a dog can be much broader than weight loss. Exercise is a vital part of physical rehabilitation, and has shown to cause remission of major depressive disorder on par with antidepressants in clinical trials.  Coupled with the effort required to keep them healthy, a dog can give a person recovering from an illness a greater sense of purpose, which helps patients mentally as well as physically.

Registering a therapy dog requires a bit of work, but is a worthwhile vocation for both dog and owner.  While medications and in-patient care are necessary for many illnesses, a visit from a dog can help make the arduous process of getting healthy a little less taxing and far more rewarding.

The Restorative Power of Music

Music has always been a universal language with the power to heal, restore and challenge an individual. The history of music dates back to the beginning of civilization and music therapy came along a few thousand years later. Music therapy first became popular in the late 1940s, a few years after World War 2 and the beginning of what we now call “The Hippie Movement”. It has been proven to help patients self-sooth, reduce muscle tension, decrease anxiety while increasing self-awareness and self-confidence, increasing verbalization and the patient’s overall view of themselves and their future. In today’s world, there are many stories of how music has helped patients through their recovery period who suffered from a mental or physical illness.

Music Therapy and Mental Illness

One in five adults in the US suffer from mental illness in a given year, which is approximately 43.8 million Americans. Despite such a large percentage of Americans who suffer from mental illness there hasn’t been much progress in effectively treating the root cause instead of only the symptoms. Music therapy bridges the gap between medication and alternative therapy. The Nordoff-Robins approach to music therapy focuses on helping patients with autism, mental disorder, and emotional disturbances to increase their interaction with others while decreasing harmful tendencies and triggers.

Follow the Music

A recent study in 2017 discussed the methods in which music therapy helped to improve the emotional and rational tendencies of people with schizophrenia. The study went on to discuss the benefits of music therapy for other mental disorders like depression and anxiety.  There is now a close correlation to an improvement in social and emotional skills to the various types of music therapy available for treatment. Mental Illness advocates and patients alike have supported the growth and progress of some of the largest music concerts all over the world. These moments of music appreciation has established a greater understanding of the healing power of music.

The Results

Music Therapy works due to the release of dopamine in the brain causing you to feel a sense of reward thus increasing your mood and desire to engage with others. A randomized controlled study in 2008 on Music Therapy for Depression indicated the potential for music therapy to lower symptoms of depression while improving overall mood. Further studies in 2016 supported this claim and extended it to anxiety disorders and some personality disorders as well. Results show that patients who have been exposed to several sessions of music therapy showed a significant improvement with coping skills and their overall self-image.

Beyond the Study

Music therapy has long proven its ability to reduce the symptoms of certain mental illnesses like depression, schizophrenia, personality disorders and many more. Future studies hope to acquire more diverse data samples and cross-analysis them with studies on introducing music to children in negative environments. These studies hope to prove and expand the understanding of how music is able to alleviate certain symptoms in the brain.

Using Art Therapy To Cope With Cancer

Data from over 20,000 people with cancer found that one in ten patients were also affected by depression. Helping patients to deal with both the physical and psychological side effects of living with and recovering from cancer needs to be a necessary part of their treatment. Many studies have found that art therapy is a great way to help cancer patients deal with how they’re feeling, including reducing depressive symptoms and physical pain, while improving their outlook on the future and making them feel listened to.

Art therapy helps to reduce pain and depression

Many studies have looked into the positive effects art therapy has on mental health in cancer patients. 1,500 participants were involved in research by the National Institutes of Health and they found a very clear link. Art therapy helped to reduce anxiety, depression and physical pain in patients, and most patients also reported a general improvement in their quality of life. The research suggested that the emotional benefits lasted as long as the therapy, but a reduction in pain was seen in patients afterwards too. However, another study found that the improvements in anxiety and depression symptoms were long-term.

Art therapy without a professional

Unfortunately, not everyone gets the opportunity to work with a professional art therapist when they’re living with cancer or they wish to continue once they’re home. People can still benefit from the effects as it’s easy to do at home by yourself. Art therapy will vary depending on the individual’s preferences as some people prefer to make or listen to music, others like to draw, paint or write, and some like to make things, like sculptures. It really doesn’t matter which art medium is chosen as the person will still be expressing themselves. For example, drawing a person’s face can be therapeutic as it can help to think of a loved one, or it can be symbolic as the facial expressions can illustrate emotions that may be difficult to discuss.

Benefits during chemotherapy and radiation treatment

Art therapy has been found to be useful during chemotherapy in three main different ways. One study found that art therapy was a relaxing and creative outlet, patients felt they were listened to more and they had a way of expressing their emotions and the opportunity to find meaning in their life. Another study looked at how women receiving radiation treatment for breast cancer could benefit from art therapy. Their overall health improved, along with their quality of life, physical health and psychological health.They also had a better body image, coping with physical side effects from treatment improved and they felt hopeful about the future.

Art therapy has the potential to be a powerful tool for helping people to live and deal with cancer, both physically and psychologically. It’s worth discussing medical professionals involved in your treatment about the option of art therapy to see what they can offer, but you can always start your own creative projects at home to help you heal.

Non-Medical Remedies For Managing Cancer Pain

Treating cancer often involves treating multiple symptoms, both physical and emotional. The symptom of pain, however, has been highlighted as one of the most critical due to the effect it can have on recovery and overall mental well-being. Pain is seen in approximately 25% of newly diagnosed patients, 33% of those having active treatment and up to 75% of those with advanced disease according to The American Pain Society. The World Health Organization have also identified cancer pain to be a global health concern, and also mention that a large percentage of patients are not adequately treated for pain.

While the normal regimes of medication treatments are usually prescribed by a variety of healthcare professionals, some elements of the pain or personal circumstances can be overlooked. In some cases the clinical approach doesn’t always work, leading many patients to look for alternative or holistic approaches to managing their pain.

Acupuncture, Reflexology and Art Therapy

Known as a physical therapy, medical acupuncture is an evidence-based medicine. It involves inserting sterile needles into certain points in the body which then stimulates the nerve to release natural chemicals which in turn give you a feeling of well being. Acupuncture, used alongside established drug therapy, has been shown to be most effective.

Reflexology is a type of massage that focuses on applying pressure to the hands and feet. There is no scientific evidence to support its use, but many people have reported positive outcomes in managing their pain. The belief is that having your feet and hands massaged in a specific way stimulates certain organs in the body which allows for the natural release of the body’s healing process and energy pathways – similar to the way acupuncture works.

Art therapy is a type of mental therapy that helps channel your focus away from the pain itself. “Art therapy does not replace the need for pain medication, but it can be used as an effective complement and reduce perceptions of pain experiences,” says Kelsey A. Skerpan, an art therapist with Harvard-affiliated Massachusetts General Hospital.

Furthermore, a study done in early 2018 and published inThe Arts in Psychotherapy looked at approximately 200 people who had been hospitalized for pain and found that just 50 minutes of art therapy significantly increased moods and lowered levels of pain.

The Benefits of Exercise

Depending on the stage of cancer you’re at and the treatment you’re having, exercise may be an option to help with chronic pain. Exercise regimes can be specifically tailored depending on your personal circumstances. Studies have shown that aerobic exercises like running, walking, cycling and swimming can have a positive influence on the way individuals react to their pain, resulting in effective pain management in the long-term.

The Importance of Sleep

Sleeping is the body’s natural way to rejuvenate and heal. If you’re living with chronic pain due to your cancer, a good night’s sleep may be difficult to achieve. Some medicines used in the treatment of cancer can also affect your sleep. To help get a better night’s sleep, try and be active during the day, avoid caffeine and carbonated drinks at night or sleep on a special mattress that curves to the shape of your body.

Pain can be difficult to manage if you have cancer. Speak openly and honestly about your symptoms with your doctor or nurse. If you’re planning on trying any therapies or alternative ways of managing your pain, always check with your healthcare team first.

A Yoga Technique to Increase Relaxation and Reduce Anxiety

Certified Yoga Therapist Raquel Jex Forsgren shares a short yoga and breathing technique to help you reduce anxiety and increase relaxation. You can refer back to these practices in stressful situations to help control your mind and breath.

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


Raquel Forsgren:

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

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

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

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

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

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

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

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

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


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

With MedHelp, you are able to achieve the following:

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

HealthTunes and MusicMedicine

Imagine a world where music is prescribed as medicine – HealthTunes calls this MusicMedicine – and your music prescription is just a click away.

HealthTunes is the only publicly available online streaming audio service created to improve your physical and mental health by pairing credible medical research with active music links.

Walter Werzowa (a musician, composer, sound inventor, and music producer) founded HealthTunes after learning his son was diagnosed with a rare medical condition. After visiting numerous physicians who recommended surgical treatment, Walter and his wife, Evelyne, decided to have their son listen to music inlaid with binaural beats and isochronic tones. Physicians saw a drastic improvement in his condition and began requesting more information from Walter and Evelyne on how they accomplished such a feat.

Subsequently, Walter decided to share his knowledge of the healing power of music and created the API for HealthTunes in the hopes of assisting others who suffer from complex medical conditions.

HealthTunes’ MusicMedicine regulates the autonomic nervous system and accelerates endogenous processes. Binaural beats, which are the result of two slightly different frequencies, create a third signal in the brain. Coupled with music, binaural beats restore and balance a patient’s physiology.

The goal is to allow everyone access to credible medical research explaining the benefits of the music they listen to. Thus, HealthTunes provides all users access to medical research from knowledgeable institutions as well as music therapy all in one place.

To use HealthTunes, simply go to the website, sign up, and music therapy is at your fingertips. Therapies can be listened to anytime, anywhere internet access is available and no credit card information is necessary. All therapies were created by music composers with medical research in mind to treat specific ailments.

Chemotherapy is very important in fighting cancer but can have unpleasant side effects. HealthTunes music has been shown to relieve chemotherapy symptoms in patients both during and after undergoing treatment.

Therapy for anxiety, depression, stress, as well as numerous other ailments is offered on the HealthTunes site. Chronic pain patients recorded 30 percent less pain perception after undergoing music therapy.

Walter strives to lessen the cost of medical care; therefore, the service is free to all patients. Donations, however, are accepted and greatly appreciated.

UCLA Medical Center Nephrology Department and UCLA Center for East-West Medicine endorse HealthTunes.

HealthTunes’ wish is to help you conquer obstacles you’re faced with while providing you with music therapy you can truly benefit from.

Take the Plunge: How Swimming is Empowering Cancer Patients

People with cancer can stand to benefit from the many positive effects of indulging in swimming. It is one of the top 10 favorite physical activities according to the 2013 Recreation Survey. Swimming for fitness also grew in popularity, jumping to 2nd place behind walking according to PHIT America. It not only keeps you in a good shape but also offers many advantages empowering patients with cancer. From acquiring survival skills to enjoying the soothing effects of the water, swimming is a form of physical and recreational activity that provides immense advantages to everyone.

Swimming is An Empowering Exercise

There’s probably nothing better than swimming. Often dubbed as the perfect workout, it is a less weight-bearing form of exercise supporting your body in the water. It enhances muscle strength, improves endurance and keeps you in a good shape. In addition, research studies show that swimming has positive effects on the mental health. It improves moods, relaxes and calms the body.

For patients affected by cancer, swimming is a physical activity that offers benefits during and after treatment. Studies also show that even those with advanced stage cancer can take advantage of the gains offered by the activity. It helps combat the side effects of the disease by decreasing the intensity of symptoms such as pain, fatigue, and peripheral neuropathy. Through physical activity, people with cancer can relax relieving stress and reducing depression caused by the illness. Quality of life is, therefore, improved through physical activity such as swimming.

A Skill with A Lifetime Value

Swimming not only provides physical and mental advantages to cancer patients, it is also a skill that you can use throughout your lifetime. It equips you with the ability to judge situations in the water, find the best solutions and cope with challenges. Although over half of Americans or 56% know how to swim according to the Red Cross Society, the ability to swim is not merely judged by being able to tread or putting your head above the water. It is also the skill to find a way out of dangerous situations and preserve your life. Swimming teaches you how to stay safe in the water. Moreover, the physical activity enables you to know how to rescue others who are in trouble safely. It also trains you how to overcome any fear that you may have such as being in or near to water and even drowning.

For patients who are going through the cancer disease, swimming is a great form of exercise that offers physical and mental benefits. It helps in decreasing the uncomfortable symptoms of cancer and assists in improving overall wellbeing. Above all, it is a life skill that can save your life and that of others.

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.

MPN Patient Cafe® October 2017 – Tips for Managing Life After Diagnosis

MPN Patient Cafe® – Taking Back Control – Tips for Managing Life After Diagnosis from Patient Empowerment Network on Vimeo.

A panel of MPN patients and care partners discuss taking back control and share their tips for managing their new normal after diagnosis.

How To Cope With Cancer-Related Fatigue

We all know what it’s like to feel tired – physically, mentally and emotionally, but usually after some relaxation and a good night’s sleep, we are ready to take on the world again. When you have cancer, though, rest often isn’t enough. Fatigue caused by cancer and its treatments takes a toll on your stamina along with the emotional effects of cancer. Being diagnosed with cancer is highly stressful and we know that stress affects your state of mind, your sleep, and your energy levels too. Even after adequate sleep or rest, you still feel tired and unable to do the normal, everyday activities you did before with ease. You experience a persistent, whole-body exhaustion. You may find it hard to concentrate or to engage in your usual activities.

What is cancer-related fatigue?

Cancer-related fatigue (CRF) is increasingly recognised as one of the most common and distressing side effects of cancer and its treatments. It has a negative impact on work, social relationships, mood, and daily activities and causes significant impairment in overall quality of life.  It has been estimated that from one quarter to nearly all cancer patients experience fatigue during and after treatment. Although CRF generally improves after therapy is completed, some level of fatigue may persist for months or even years following treatment.  Studies of long-term breast cancer survivors suggest that approximately one-quarter to one-third experience persistent fatigue for up to 10 years after cancer diagnosis.

Some symptoms of cancer-related fatigue, according to the American Cancer Society are:

  • A constant feeling of tiredness that doesn’t ever go away or get better
  • Being more tired than usual before, during, or after activities
  • Feeling too tired to perform normal routine tasks
  • Feeling general weakness or lethargy
  • Lacking energy
  • Being tired even after a good night’s sleep
  • Inability to concentrate or focus
  • Inability to remember
  • Being sad, irritable or depressed
  • Easily frustrated or angered
  • Trouble sleeping/insomnia
  • Difficulty moving arms or legs

What medical help is available for cancer-related fatigue?

A lot of cancer patients do not report fatigue to their doctors because they think that nothing can be done for it. In fact, there are things that can be done to alleviate the debilitating effects of CRF.  If left untreated, fatigue may lead to depression and profoundly diminish your quality of life, so it’s important that you speak to your doctor if fatigue is an issue for you.

Before you can address CRF specifically, your doctor needs to determine if there are any underlying medical issues which may be contributing to your fatigue.  For example, if you are anaemic, you may need to take nutritional supplements like iron. Sometimes fatigue is confused with depression. It’s important, therefore, to be evaluated to distinguish between the two. You may experience one or the other, or both at once. But they are not the same. You may need treatment for depression before you can adequately deal with your fatigue.

6 Everyday Strategies To Cope With CRF


Making some adjustments to your everyday routines can also help you cope with CRF. Here are 6 ways to do this.

1. Make deposits in your ‘energy bank’

Don’t expect to be able to do what you could do before cancer. Know your limits and don’t expect too much of yourself. You may find it helpful to think of your energy reserves as your ‘energy bank’. Whenever you do an activity you make a withdrawal. And when you rest you make a deposit. It’s important to balance withdrawals with deposits. If you keep doing too much whenever you feel like you have energy, you’ll run out completely and not have any reserves left for the things that are important.

2. Plan your day

Planning is key when you have fatigue.  Write a ‘To Do’ list each evening so you can prioritize the things you need to do the next day.  By prioritizing in this way, you can use your energy on the activities most important to you. Spread your activities throughout the day during times when you feel best and take rest breaks in between activities.

3. Keep a fatigue diary

Keeping a fatigue diary – where you score your fatigue each day on a scale from 1 to 10, and record your activities – can help you think about patterns in your energy levels throughout the day.    This can make it easier to plan your activities for the times when you have more energy.

4. Do some regular light exercise

Although exercising may be the last thing you feel like doing, if you don’t exercise, you’re more likely to experience fatigue. In fact, a new study found that exercise and psychological interventions may be powerful tools in combatting cancer-related fatigue. Research has shown that there are many benefits to exercise. Not only does it help reduce the symptoms of fatigue, exercise encourages your body to release endorphins – often called ‘feel good hormones’. When released, endorphins can lift your mood and sense of well-being.

5. Eat healthily

When we are exhausted, we tend to gravitate towards processed, junk food which depletes our energy reserves further.  Follow a well-balanced diet (high in protein and carbohydrates, low in sugar) and drink plenty of fluids to avoid dehydration.

6. Adjust your work schedule

Talk to your employer about making adjustments to your work schedule. Discuss the possibility of flexible working hours, reduced working hours or working from home.  Ask colleagues to help you with some of your work.  Talk to your occupational health adviser if you have one. They have a duty to support you doing your job and help you with any health problems that may affect your work.

Though fatigue is a common symptom when you have cancer, there are steps you can take to reduce or cope with it. There’s no one way to diagnose or treat cancer-related fatigue. Try some or all of these coping tips until you find what works for you.

How Your Lifestyle Can Affect Genes That Cause Cancer

There are two schools of thinking about cancer.  School one says that cancer is a hereditary disease, passed from generation to generation.  A good example of this are women who possess the BRCA1 and BRCA2 gene mutation.  Women with this mutation have a 70% lifetime risk of developing breast and/or ovarian cancer.  Angelina Jolie, for example, lost her mother and aunt to cancer and was subsequently found to have the same mutation.

The second school says that cancer can occur due to lifestyle choices.  A good example of this is cigarette smoking. It is the number cause of lung cancer, linked to 80 – 90% of lung cancer cases.

Recently, researchers at the Boston University School of Medicine have introduced another theory about the development of cancer.  They proposed that there are processes within our cells that activate certain sequences of DNA.  Those processes act as on/off switches for the development of cancer.

This idea is based on the evolving science of epigenetics. Epigenetics looks at the way genes express or don’t express themselves as we age.  Those gene changes are thought to be influenced directly as a result of our nutrition and behavior, as well as exposure to toxins in our environment.  In a sense, it’s a hybrid of hereditary disease and lifestyle choices.

Epigenetics is a normal process in our bodies.  For example, all of our DNA is the same, yet cells develop into liver cells, brain cells, muscle cells, etc. because of the way epigenetics turns on and off different cell processes.  But our lifestyle choices can impact the way genes express themselves as well.

Perhaps you’ve heard the expression “Sitting is the new smoking.”  The reason for this is due to research on lifestyle and cancer.  The results of dozens of surveys found that a sedentary lifestyle increases the risks of cancer, specifically colon cancer.  Subjects who spent most of their day sitting were 24% more likely to get colon cancer.  People who watched the most television had a 54% greater risk than those who watched fewer hours.  Uterine cancer was also affected by sitting; women who were the most inactive experienced a 32% great risk.  The female T.V. watchers fared worse; those who watched the most television has a 66% risk of developing uterine cancer.

In all these cases, it’s not the inactivity per se that causes cancer to develop.  It’s the processes of epigenetics that are affected by inactivity that can cause cancer.

It’s a complicated and exciting time.  Next month, more on how unhealthy habits are incorporated into our DNA and passed onto our children.


Reducing Your Risk of Cancer

The American Institute for Cancer Research (AICR) estimates that approximately one-third of cases of the most common cancers in the U.S. could be prevented, which accounts for about 374,000 cases of cancer per year. Cancer prevention is action taken to lower the chance of getting cancer therefore reducing the burden and deaths from cancer each year. Since February is Cancer Prevention Month, we wanted to highlight some ways to reduce your risk and protect yourself from cancer.

1. Eat a healthy diet & Stay active

Eating a balanced plant-based diet filled with a variety of vegetables, fruits, soy, nuts, whole grains, and beans can help lower your risk for many types of cancer and will help you maintain a healthy weight.

Adults should get et at least 150 minutes of moderate intensity or 75 minutes of vigorous intensity activity each day (or a combination of these), preferably spread throughout the week. While children and teens are recommended to get at least 1 hour of moderate or vigorous intensity activity each day, with at least 2.5 hours of moderate intensity aerobic activity each week.

2. Protect yourself from the sun

Sun exposure at any age can cause skin cancer. Be especially careful in the sun if you burn easily, spend a lot of time outdoors, or have any of the following physical features:

  • Numerous, irregular, or large moles
  • Freckles
  • Fair skin
  • Blond, red, or light brown hair

To block UV rays try covering-up, wearing sunscreen, wearing a hat, using UV-absorbent shades, and limiting you exposure time.

3. Get immunized

The human papillomavirus (HPV) vaccine helps prevent most cervical cancers and several other kinds of cancer, and the hepatitis B vaccine can help lower liver cancer risk.

4. Avoid risky behavior

Another effective cancer prevention tactic is to avoid risky behaviors that can lead to infections that, in turn, might increase the risk of cancer. Some behaviors to avoid:

  • Excessive alcohol consumption
  • Tanning beds
  • Tobacco use
  • Unsafe sex
  • Sharing needles

5. Get regular medical care and screenings

Along with regular check-ups with your physician to maintain an open health dialogue, cancer screenings should also be scheduled. These include the following:

  • Pap smear – Most women ages 21 to 65 should get Pap tests as part of routine health care. Even if you are not currently sexually active, you should still have a Pap test
  • Colonoscopy – Colon cancer screening should begin at age 50 for most people. If a colonoscopy doesn’t find adenomas or cancer and you don’t have risk factors, the next test should be in ten years.
  • Mammogram – Women should should get mammograms every year starting at age 40, for as long as a woman is in good health
  • Checking skin for irregular moles, etc.


The digital sherpa™ Program

The digital sherpa™ Program helps cancer patients and care partners become more tech-savvy in order to be empowered in their health and healthcare decisions. The program is currently carried out in two different versions, either a in-person, hands-on digital sherpa™ Workshop or through the creation of a digital sherpa™ Help Desk at well known cancer centers.

Cancer patients or care partners who express a desire to become more competent in Internet and social media skills will meet with college students who have been specially trained as Internet “sherpas”. The students will offer help to find support and informational resources online and may include the following:

  • Information about their disease and other health resources
  • How to get help to become a self-advocate
  • Where to connect with other patients
  • How to become more tech-savvy

Please check out the video below that was produced from our pilot program.

digital sherpa™ Program from Patient Empowerment Network on Vimeo.

2018 Outcomes

In 2018, we carried out this program in partnership with Moffitt Cancer Center and Cancer Support Community, and the infographic below highlights some of the achievements of the Digital Sherpa™ Program.

17 Tips For Patient Engagement

To kick off 2017 and new year of patient engagement and empowerment, we are showcasing 17 tips from patients, caregivers, and leaders throughout the industry. A special thanks to our partner, The Conference Forum and their Patients as Partners US program, for helping to obtain a few of these excellent testimonials. Their tips and advice are as follows.


1. Jack Aiello

“Patients and their care partners need to get educated about their disease and become their own best patient advocates.  The internet can be a great resource where disease specialists create videos on topics from disease overview to treatments and side effects.  And by getting 2nd and 3rd opinions from disease specialists, you put yourself in the best possible position to make good decisions with your doctor.”

2. Randy Broad

One very important aspect of treatment, especially at the time of diagnosis, is to understand what treatment options your oncology team is recommending and why.  Many providers have ‘pathways’ which determine how a specific cancer (and stage) be treated.  Be sure to fully understand what’s behind and underneath this directive.  Many times it can be determined based upon cost, not best options currently available.”

3. Matthew Zachary

“Patients have the right to survive with dignity and quality and we deserve to be treated age-appropriately. More so, they also have the right to be made aware of the relevant support resources they are entitled to so they can get busy living. This is what it means to face cancer.”

4. Cindy Chmielewski

“Knowledge is power. Educated patients are empowered. Educate yourself. Join a support community either in-person or online; follow the #mmsm hashtag on Twitter; subscribe to disease appropriate YouTube channels, listen to webcasts/podcasts presented by patient advocacy organizations and engage in meaningful discussions with your healthcare team.

Be a partner in your care. “

5. Jennifer Ahlstrom

“Don’t be afraid to speak up. Patients who ask their doctor questions, ask for explanations and treatment rationales get better outcomes. Myeloma is a very complicated disease and there are now an incredible number of treatment options available for patients. If you don’t feel comfortable asking your doctor questions, it’s time to find another doctor, preferably a myeloma specialist who treats hundreds of myeloma patients.”

6. Marie Ennis-O’Connor

“Becoming an empowered patient means taking personal responsibility for your health. You engage with health care providers and systems in ways that are proactive, rather than reactive. You take positive steps in the direction of the care that is right for you.”

7. Scott Riccio

“Remember that YOU get to define value for your own care.  Nobody can read your mind, though, so you have to share what you value, how it impacts you, and what tradeoffs you are willing to make to get the outcomes YOU want.”

8. Andrew Schorr

“Ask your doctor questions! How can we be sure my diagnosis is 100% accurate? How much experience do you have treating this illness? Are there other tests that can help me get the most on-target treatment for my case? What are all the approved medicines for my situation? Why would you recommend one over another? What clinical trials could be right for me, whether or not you have them at this clinic/hospital?”

9. Esther Schorr

“As a care partner, it really is a time to be hopeful as the advances in cancer treatment are moving very, very fast. As it is for the patient you love, it is key to stay educated about advances in treatment options that might be right, and be actively involved in discussions about genetic testing and clinical trials.  It’s also critical to lean on your personal community…friends, family, counselors…in order to “keep it in the road” and retain realistic optimism. As more and more survivors and care partners reach out to each other and share stories, we all gain insights and perspective – and you will hopefully feel supported along the cancer journey. We are all in it together, and we are here for each other.”

10. Amy Ohm

“Caregivers need self-care to effectively care for a loved one – always make sure to put on your oxygen mask first! It can be incredibly challenging to focus on ones health with the daily demands of care-giving. Make 2017 the year you assess your own health and strive to reduce daily stress. Connecting privately with those who relate and to share experience to learn from others can help. We want you to be health in the New Year!”

11. David Wallace

“It is imperative that you gain a solid understanding of your disease so you can become your own advocate.  Connecting with other knowledgeable patients via social media or online forums to learn what has worked or failed to work for them is a good start.  Understand the treatment options that are available to you.  See an MPN specialist who will work with your local hematologist.  If you are not being treated with care and respect, don’t hesitate to seek a 2nd opinion and change doctors until you receive the level of care you deserve.”

12. Carol Preston

“NEVER hesitate to ask questions.  In fact, write down your questions in advance, take them with you to your appointment and go through them one by one.  Be sure to write down the answers (or get your care partner to take notes) as a short pencil is far better than a long memory.  Better yet, record the QA on your smart phone so that you can listen later to the answers as you’ll retain only about 10% of what the doc tells you during your appointment.”

 13. T.J. Sharpe

“Patients and caregivers can be better engaged in 2017 by reaching out to their patient community and actively becoming involved in the support of fellow patients through person to person and group interaction.  Patients and their caregivers can raise the bar for everyone involved in healthcare so that the expectations of patients as a partner in their care is not just accepted, but standard and demanded by patients.”

14. Marilyn Metcalf

“Set our goals together in the New Year, and then work together on our plans and make them happen.”

15. Durhane Wong-Rieger

“Patients are basically a heterogeneous lot, coming with all types of experiences and talents, as well as desires and needs.  Some patients want to have a voice in high-level  policy and system decision-making; some want to extend a personal hand of support.  The more diverse the channels and opportunities for involvement, the more patients can take active and meaningful roles. Every person naturally wants to feel respected and empowered so it doesn’t take much to engage patients: provide a portal, support, information, acknowledgement and most important action.”

16. Deb Maskens

“Patients and caregivers get information from a wide variety of sources, from personal anecdote to television advertising to medical journals. Empowerment and engagement for patients and caregivers in 2017 needs to start by providing them with more information that is trusted, balanced, and objective. Information is power. Let’s give patients and caregivers the information they need as the first step for them to be empowered and engaged in treatment decisions that are right for them as individuals.”

17. Jeff Folloder

“Resource management.  I’m not talking about managing the funds to pay for treatment or care.  I’m talking about managing you.  I got great advice from a lady in a waiting room at MD Anderson.  She told me that every day we wake up with a bucket of energy that we can spend on anything we want and it’s gone at the end of the day.  We can spend that energy on quality things and be tired and fulfilled.  Or we can spend it on silly things like worry and regret and go to sleep tired and empty.  She’s right.  And I remember her words every day.”