Myeloproliferative Neoplasms Archives

Myeloproliferative neoplasms (MPNs) are a closely related group of progressive blood cancers in which the bone marrow typically overproduces one of the mature blood elements. Other shared features include tendencies toward blood clotting/bleeding, organ enlargement, bone marrow scarring (fibrosis) and a possibility of transformation.

More resources for Myeloproliferative Neoplasms from Patient Empowerment Network.

Understanding Clinical Trials: A Jargon Buster Guide

When it comes to cancer treatment you or a loved one may be considering participating in a clinical trial as a treatment option.  Clinical trials are designed to evaluate the safety and effectiveness of a treatment. They may involve researchers administering drugs, taking blood or tissue samples, or checking the progress of patients as they take a treatment according to a study’s protocol.

Learning about clinical trials can be a steep learning curve – not least because the process comes with a lot of new terms, acronyms and jargon.  To help you, I’ve put together this list of the most common terms you will find when you are researching clinical trial information. This is not an exhaustive list but it is a helpful starting point. At the end of this article you will see links to find more information.

Adverse Effects (AE)   

Also called Adverse Events, or Adverse Drug Reaction, AEs are any harmful event experienced by a person while they are having a drug or any other treatment or intervention. In clinical trials, researchers must always report adverse events, regardless of whether or not the event is suspected to be related to or caused by the drug, treatment or intervention.

Arm 

Subsection of people within a study who have a particular intervention.

Bias

Bias is an error that distorts the objectivity of a study. It can arise if a researcher doesn’t adhere to rigorous standards in designing the study, selecting the subjects, administering the treatments, analysing the data, or reporting and interpreting the study results. It can also result from circumstances beyond a researcher’s control, as when there is an uneven distribution of some characteristic between groups as a result of randomization.

Blinding

Blinding is a method of controlling for bias in a study by ensuring that those involved are unable to tell if they are in an intervention or control group so they cannot influence the results. In a single-blind study, patients do not know whether they are receiving the active drug or a placebo. In a double-blind study, neither the patients nor the persons administering the treatments know which patients are receiving the active drug. In a triple-blind study, the patients, clinicians/researchers and the persons evaluating the results do not know which treatment patients had. Whenever blinding is used, there will always be a method in which the treatment can be unblinded in the event that information is required for safety.

Comparator

When a treatment for a specific medical condition already exists, it would be unethical to do a randomized controlled trial that would require some participants to be given an ineffective substitute. In this case, new treatments are tested against the best existing treatment, (i.e. a comparator). The comparator can also be no intervention (for example, best supportive care).

Completed

A trial is considered completed when trial participants are no longer being examined or treated (i.e. no longer in follow-up); the database has been ‘locked’ and records have been archived.

Control

A group of people in a study who do not have the intervention or test being studied. Instead, they may have the standard intervention (sometimes called ‘usual care’) or a dummy intervention (placebo). The results for the control group are compared with those for a group having the intervention being tested. The aim is to check for any differences. The people in the control group should be as similar as possible to those in the intervention group, to make it as easy as possible to detect any effects due to the intervention.

Efficacy

How beneficial a treatment is under ideal conditions (for example, in a laboratory), compared with doing nothing or opting for another type of care. A drug passes efficacy trials if it is effective at the dose tested and against the illness for which it is prescribed.

Eligibility Criteria/ Inclusion and Exclusion Criteria

Eligibility criteria ensures patients enrolling in a clinical trial share similar characteristics (e.g. gender, age, medications, disease type and status) so that the results of the study are more likely due to the treatment received rather than other factors.

Follow-up

Observation over a period of time of participants enrolled in a trial to observe changes in health status.

Informed Consent

A process (by means of a written informed consent form) by which a participant voluntarily agrees to take part in a trial, having been informed of the possible benefits, risks and side effects associated with participating in the study.

Intervention

The treatment (e.g., a drug, surgical procedure, or diagnostic test) being researched. The intervention group consists of the study participants that have been randomly assigned to receive the treatment.

Investigator

A person responsible for the conduct of the clinical trial at a trial site. If a trial is conducted by a team of individuals at a trial site, the investigator is the responsible leader of the team and may be called the principal investigator (PI).

Multicentre Trial

A clinical trial conducted according to a single protocol but at more than one site, and therefore, carried out by more than one investigator.

Number needed to treat (NNT)

The average number of patients who need to receive the treatment or other intervention for one of them to get the positive outcome in the time specified.

Outcome Measures

The impact that a test, treatment, or other intervention has on a person, group or population.

Phase I, II, III and IV Studies

Once the safety of a new drug has been demonstrated in tests on animals, it goes through a multi-phase testing process to determine its safety and efficacy in treating human patients. If a drug shows success in one phase, the evaluation moves to the next phase

  • Phase 1 tests a drug on a very small number of healthy volunteers to establish overall safety, identify side effects, and determine the dose levels that are safe and tolerable for humans.
  • Phase II trials test a drug on a small number of people who have the condition the drug is designed to treat. These trials are done to establish what dose range is most effective, and to observe any safety concerns that might arise.
  • Phase III trials test a drug on a large number of people who have the condition the drug is designed to treat. Successful completion of Phase III is the point where the drug is considered ready to be marketed.
  • Phase IV trials can investigate uses of the drug for other conditions, on a broader patient base or for longer term use.

Placebo

A fake (or dummy) treatment given to patients in the control group of a clinical trial.  Placebos are indistinguishable from the actual treatment and used so that the subjects in the control group are unable to tell who is receiving the active drug or treatment. Using placebos prevents bias in judging the effects of the medical intervention being tested.

Population

A group of people with a common link, such as the same medical condition or living in the same area or sharing the same characteristics. The population for a clinical trial is all the people the test or treatment is designed to help.

Protocol

A plan or set of steps that defines how something will be done. Before carrying out a research study, for example, the research protocol sets out what question is to be answered and how information will be collected and analysed.

Randomized Controlled Trial (RCT)

A study in which a number of similar people are randomly assigned to 2 (or more) groups to test a specific drug, treatment or other intervention. One group has the intervention being tested; the other (the comparison or control group) has an alternative intervention, a placebo, or no intervention at all. Participants are assigned to different groups without taking any similarities or differences between them into account. For example, it could involve using a computer-generated random sequence. RCTs are considered the most unbiased way of assessing the outcome of an intervention because each individual has the same chance of having the intervention.

Reliability

The ability to get the same or similar result each time a study is repeated with a different population or group.

Sample

People in a study recruited from part of the study’s target population. If they are recruited in an unbiased way, the results from the sample can be generalised to the target population as a whole.

Subjects

In clinical trials, the people selected to take part are called subjects. The term applies to both those participants receiving the treatment being investigated and to those receiving a placebo or alternate treatment.

Trial Site

The location where trial-related activities are conducted.


References

The Canadian Institutes of Health Research (CIHR)

TROG Cancer Research

ICH.org

NICE

Further Resources

American Society of Clinical Oncology’s Cancer.Net trials site

National Cancer Institute (NCI) Clinical Trials lists open and closed cancer clinical trials sponsored or supported by NCI. 

ClinicalTrials.gov database of privately and publicly funded clinical studies

CenterWatch Clinical Trials Listing

Essential Lab Tests for Myeloproliferative Neoplasm (MPN) Patients

Essential Lab Tests for Myeloproliferative Neoplasm (MPN) Patients from Patient Empowerment Network on Vimeo.

 Lindsey Lyle, a physician assistant specializing in MPNs, reviews the lab tests that should be administered following an MPN diagnosis and how the results could affect overall care.

Lindsey Lyle is a physician assistant at the University of Colorado Cancer Center, specializing in hematological malignancies with a subspecialty in myeloproliferative neoplasms (MPNs). More about this expert here.

See More From the The Path to MPN Empowerment

Related Programs:

Can Diet and Exercise Reduce MPN Symptoms?

Expert Tips for Managing MPN-Related Anxiety

Improving Life with MPNs: The Latest Research and How to Get Involved


Transcript:

Lindsey:

When somebody is diagnosed with an MPN, there are a variety of tests that are important for coming up with treatment strategies. And so, really, before starting treatment, it’s fairly imperative to have a CBC, or complete blood count, which was very likely done that led to the diagnosis of the MPN, but that’s very critical, as well as having a differential. This is basically just looking a little bit deeper at the white blood cells and their components, so that’s a critical part of the CBC, or complete blood count.

And then, having a chemistry panel, just to look at organ functioning, such as the kidney functioning and the liver functioning, as well as different electrolytes that may be indicative of something going on that would maybe impact treatment.

Additionally, having a bone marrow biopsy with molecular testing is advised. This is very critical in leading to the diagnosis of the MPN and then, also, really differentiating what subtype of MPN a patient may have.

The bone marrow is very critical for this purpose, and the genetic testing helps us to understand perhaps if a patient is having a higher-risk disease or a lower-risk disease and can help guide treatment as well. There are a variety of other chemistry tests that are done that can help specifically when looking at patients with polycythemia vera. This may be called an erythropoietin level.

Additionally, iron studies are generally recommended before starting treatment for MPNs, just to assess iron storage, availability, and that sort of component to the treatment may vary depending on that result. Additionally, if patients are having any sort of symptoms related to an enlarged spleen, generally, having an imaging study may be warranted if the symptom is quite severe and causing problems, and getting a baseline prior to starting treatment is generally a good idea.

When looking at a CBC, there are really three main cell lines that we monitor closely in MPNs regardless of the subtype, and this includes the white blood cell count, the red blood cell count or hemoglobin and hematocrit – those are measures of the total red blood cell count – and then, also, platelets. And so, these really are three different types of cells that your bone marrow produces that help with different functions.

And so, monitoring for any sort of changes within these three cell lines – white blood cells, red blood cells, or platelets – can really help us know maybe how the disease is changing, how a patient is responding to treatment, so these three key laboratory values are very necessary and really help us as providers and U.S. patients monitor progress, or for any changes in a positive way, or perhaps in a way that needs to be addressed.

Diagnosed With an MPN? Why You Should Consider a Second Opinion.

Diagnosed With an MPN? Why You Should Consider a Second Opinion. from Patient Empowerment Network on Vimeo.

 Physician assistant Lindsey Lyle explains the importance of seeking a second opinion when diagnosed with an MPN.

Lindsey Lyle is a physician assistant at the University of Colorado Cancer Center, specializing in hematological malignancies with a subspecialty in myeloproliferative neoplasms (MPNs). More about this expert here.

See More From the The Path to MPN Empowerment

Related Programs:

Am I Meditating Correctly? Getting the Most out of Mindfulness

Expert Tips for Managing MPN-Related Anxiety

Improving Life with MPNs: The Latest Research and How to Get Involved


Transcript:

Lindsey:

When a patient is initially diagnosed with an MPN, seeking a second opinion is generally a very good idea, especially if patients are perhaps in an area where they do not have access to academic medical center.

The reason is that MPNs are such a small percentage of blood cancers – and, blood cancers in and of themselves are very rare, so MPNs are very rare, and especially in rural places, physicians do not have access or experience so much with MPNs. So, especially in those scenarios, I always advise a second opinion.

However, even within the academic medicine world, for example, if a patient is referred to me by their primary care physician or our institution, we always offer patients to seek a second opinion. Really, this is to gather information and either encourage the patient because the recommendation is the same or also to perhaps have a different idea for treatment that may fit the goals of the patient better, and so, I’m always telling patients to seek second opinions.

An Expert Summary of Current MPN Treatment Options

An Expert Summary of Current MPN Treatment Options from Patient Empowerment Network on Vimeo.

 MPN expert, Lindsey Lyle, provides an overview of therapies used to treat myelofibrosis (MF), polycythemia vera (PV) and essential thrombocythemia (ET).

Lindsey Lyle is a physician assistant at the University of Colorado Cancer Center, specializing in hematological malignancies with a subspecialty in myeloproliferative neoplasms (MPNs). More about this expert here.

See More From the The Path to MPN Empowerment

Related Programs:

Can Diet and Exercise Reduce MPN Symptoms?

Expert Tips for Managing MPN-Related Anxiety

Improving Life with MPNs: The Latest Research and How to Get Involved


Transcript:

Lindsey:

To overview the treatment types for MPNs, we have a variety of different mechanisms in which we use, and clumping these three main MPNs together, we can kind of break it down into, first of all, cytoreductive therapy, which is nonspecific, but really just reduces the amount of cells the bone marrow is producing. And so, it’s really to control the blood counts. And, different types of cytoreductive therapy generally are – hydroxyurea is used probably the most commonly.

There are some other sorts of chemotherapy that may be used in different instances. We also have biological agents, such as interferons, that may be used in patients with MPNs. We then have JAK inhibitors, which there are two FDA-approved JAK inhibitors at this point for myelofibrosis, and one approved for polycythemia vera.

We also have a variety of novel agents in clinical trials. These may be inhibiting different pathways of the cellular production or different signaling pathways at the level of the stem cell, so there are a variety of those. We also use hypomethylating agents in some patients who maybe have higher-risk disease, mainly myelofibrosis, that really changes the way that the stem cells are produced in the bone marrow in order to control the cell counts and also symptoms.

So, there are a variety of therapeutic measures that are taken. Additionally, not necessarily medication-related, but phlebotomy, which is considered a therapy for polycythemia vera, is generally used in order to reduce red blood cell volume, and then, aspirin is commonly used, especially in polycythemia vera and essential thrombocythemia as a supportive care medication to reduce risk of complications from the disease.

Can Diet and Exercise Reduce MPN Symptoms?

Can Diet and Exercise Reduce MPN Symptoms? from Patient Empowerment Network on Vimeo.

What can YOU do to make a positive impact on your overall MPN care? Researchers Dr. Jennifer Huberty and Ryan Eckert review the latest research on how movement and diet can benefit people living with myeloproliferative neoplasms (MPNs).

Dr. Jennifer Huberty is an Associate Professor at Arizona State University. She focuses her research on the use of complementary approaches to manage symptoms and improve quality of life for patients living with myeloproliferative neoplasms. More about Dr. Huberty here: chs.asu.edu/jennifer-huberty.

Ryan Eckert currently works at Mays Cancer Center, home to UT Health San Antonio MD Anderson Cancer Center. Ryan is the Research Coordinator for the MPN QoL Study Group and assists in research related to complementary health approaches in myeloproliferative neoplasms and other hematological disorders. More about Ryan here: mpnqol.com/research-team.

See More From the The Path to MPN Empowerment

Related Programs:

Am I Meditating Correctly? Getting the Most Out of Mindfulness

Expert Tips for Managing MPN-Related Anxiety

Improving Life with MPNs: The Latest Research and How to Get Involved


Transcript:

Ryan:

So, as far as the benefits of exercise for MPN patients, there’s many, and so, I guess starting with cancers as a whole, there’s a lot more research that’s been done in recent decades that looks at the effects of various forms of exercise and physical activity on other cancers. They just tend – researchers tend to do a lot more of that work in breast cancer, lung cancer, colon cancer, et cetera.

And so, the research in exercise for MPN patients is actually really new, and nobody outside of Dr. Huberty in conjunction with Dr. Mesa and a few other researchers have done any research related to exercise specifically in MPN patients. Our yoga studies that we’ve done have been the first venture down that route for MPN patients. But, what we do know in general is that exercise has obviously systemic effects across the whole body.

So, you’re gonna get health benefits just in general from exercise, but as far as for MPN patients specifically, some of the things that we’ve seen with our yoga studies, which is obviously a form of physical activity, is that we’ve seen sleep improve in MPN patients, so we’ve seen a reduction in sleep disturbances or disruptions in their sleep, a quicker time to fall asleep, and then, less waking up throughout the night – so, just better sleep in general.

We’ve seen some reductions in fatigue that have been reported by MPN patients who have gone through our yoga studies, and then, we’ve also seen a few other reductions in some other symptoms, such as anxiety and reduced depressive symptoms, a little bit of reduced pain is another one we’ve seen. So, just in general, we’ve seen some of those effects on MPN patients through some of our yoga studies.

Dr. Huberty:

So, in terms of adding to what Ryan just said, I would just say that exercise – maybe yoga or walking – is good for your body. It’s good for your health. It’s a recommendation that we get 150 minutes of moderate-intensity activity every week. The more that MPN patients can be achieving that goal towards 150 minutes – yoga counting at that – the better off they’re gonna be, and it doesn’t have to be going for a run.

It can simply be going for a walk around the block. It can be standing at your desk when you’re working instead of sitting all the time. That’s not necessarily activity per se, but it is moving your body and less sedentary. So, I think just focusing on the more that patients can move their body every day, the better off they’re gonna be.

Dr. Huberty:                

So, yeah, the role of diet in MPN patients – so, this is the beauty about the quality of life study group, because we have all these wonderful investigators that are part of the team, and we do have Dr. Robyn Scherber, who’s at Mays with Dr. Ruben Mesa. She’s doing some work with keto diet right now, so it’s very new, so I don’t know if you’re familiar with the keto diet, but it’s very high-fat and very low-carbohydrate, extremely low levels of carbohydrates. I wouldn’t tell any patient to go start doing those things unless they’ve talked to their physician for sure, but we do know that based on how you eat does certain things to your body.

So, MPNs have high inflammatory markers, and so, we wanna decrease inflammation; we probably wanna eat foods that are going to be anti-inflammatory. So, berries, let’s say, is a good example of fruits that are anti-inflammatory, almonds are anti-inflammatory, and I’m not a dietitian by any means, it’s just that things that I know to be true for my own diet because everybody should be thinking about having an anti-inflammatory diet.

Processed foods are not healthy. They are higher-inflammatory. Breakfast foods, eating out, and the foods that you get when you eat out a lot are going to be more inflammatory than not. So, just those small things – lots of vegetables. Vegetables are very good. Lots of greens. But, there is research going on – again, just like exercise and yoga, it’s in its infancy because MPN has been an under-studied population for years, and we’re trying to power through and make that difference.

Am I Meditating Correctly? Getting the Most Out of Mindfulness

Am I Meditating Correctly? Getting the Most Out of Mindfulness from Patient Empowerment Network on Vimeo.

Dr. Jennifer Huberty explains how mindfulness, such as meditation and yoga, can have an impact on your overall health and well-being.

Dr. Jennifer Huberty is an Associate Professor at Arizona State University. She focuses her research on the use of complementary approaches to manage symptoms and improve quality of life for patients living with myeloproliferative neoplasms. More about Dr. Huberty here: chs.asu.edu/jennifer-huberty.

See More From the The Path to MPN Empowerment

Related Programs:

Can Diet and Exercise Reduce MPN Symptoms?

Expert Tips for Managing MPN-Related Anxiety

Improving Life with MPNs: The Latest Research and How to Get Involved


Transcript:

Dr. Huberty:    

If someone is wondering if they’re meditating correctly or not, or if two minutes of meditation is enough, if you turn to the science and the literature in terms of how much meditation you need, nobody knows. For every study that says five minutes, there’s a study that says 20 minutes, there’s a study that says an hour. I think it’s really important that the individual gets in touch with “what works for me.”

I think the most important thing is that if you’re sitting for meditation and you choose to sit for meditation, just simply listening to your breath – when you realize you’re off, thinking about what I’m making for dinner tonight or what’s gonna happen over the Thanksgiving holidays with my family, then you just say, “Oh, thinking,” and then you come back to, “Okay, where’s my breath? I’m breathing in, I’m breathing out. I’m breathing in, I’m breathing out.” So, it’s just being able to do that and not say, “Oh my God, I’m not doing this right, this isn’t working for me.” There is none of that. It’s supposed to be nonjudgment in the present moment.

“Oh, the present moment – I’m thinking. Now, in the present moment, I’m gonna go back to my breath.” So, it’s really understanding that, and I think it’s also important for people to understand that you don’t have to be seated in meditation. You can be standing in meditation, you can be laying in meditation, you can be kneeling in meditation. I think with MPN patients, not all sitting positions recommended in meditation might be comfortable. If you need a pillow under your tail, put a pillow under your tail. There’s no rulebook to say how you need to sit in meditation. I think that’s important.

And, there’s also other ways to be mindful. Coloring can be mindful. Walking and exploring the leaves and the landscape can be mindful. So, I think in our studies, yes, we’re encouraging meditation, using an app, but that’s to give people structure, education, and a background about what is meditation, but then, there is room for expansion to other things.

It’s pretty much the same thing with yoga. You’re quieting your mind; you’re focusing on your breath. There’s no rulebook that says you have to move a certain pace. You’re supposed to move with your breath, so if your breath is slow, your pace is slow. The other thing is that there is no right way to do a pose.

So, again, patients wanna know, “Am I doing this pose right?” Well, I can tell you that if you feel good in the pose, nothing is hurting you, your shoulder doesn’t feel like it’s doing something it shouldn’t, your head doesn’t feel like it’s in the wrong direction, and you’re watching the video and looking at what the instructor’s doing, you’re probably doing the pose just fine.

I think we get stuck on “Is this correct or not?” What we wanna be careful of is safety. You don’t wanna be standing on your head and wondering if you’re doing it correctly. You wanna have a basis, and that’s what we do in our programming, is it’s very basic, very foundational poses that you can learn the practice of meditating in the poses.

Expert Tips for Managing MPN-Related Anxiety

Expert Tips for Managing MPN-Related Anxiety from Patient Empowerment Network on Vimeo.

Health-related anxiety and worry can be overwhelming. Dr. Jennifer Huberty provides advice for using complementary approaches to cope with the emotional impact of a chronic cancer, like myeloproliferative neoplasms (MPNs).

Dr. Jennifer Huberty is an Associate Professor at Arizona State University. She focuses her research on the use of complementary approaches to manage symptoms and improve quality of life for patients living with myeloproliferative neoplasms. More about Dr. Huberty here: chs.asu.edu/jennifer-huberty.

See More From the The Path to MPN Empowerment

Related Programs:

Can Diet and Exercise Reduce MPN Symptoms?

Am I Meditating Correctly? Getting the Most Out of Mindfulness

Improving Life with MPNs: The Latest Research and How to Get Involved


Transcript:

Dr. Jennifer Huberty: 

With anxiety and worry – it’s like we get in this state of mind that we can’t seem to get out of, and then, thoughts just keep piling in and piling in and adding to more anxiousness and more anxiousness, and so, the key is quieting the mind, and the best way to do that is to focus on your breath, and again, just coming back to the moment, coming back to the moment. You can do body scans where you’re just thinking about where your body is in space, going from the tips of your toes all the way to the top of your head.

I recommend guided meditation for MPN patients, especially because it is difficult. The anxiety and worry is real. The fears are real. This is a – it’s a traumatic event to be diagnosed with any cancer, and the brain is a powerful thing in terms of getting in our way of healing and feeling better, and so, knowing that it’s powerful, we can quiet our mind so that our body can learn to let go. And, I will say that spending that time doing that with the anxiety and worry, there will be physiological symptoms that change – so, heart rate goes down, blood pressure goes down, sweaty palms decrease, stomachaches – those kinds of things will tend to go away as anxiety and worry goes down.

And, the other important thing I would say is a tip for managing is to be self-compassionate. So, that’s a big part of meditation and yoga philosophy, is self-compassion. And so….being okay with being anxious and being okay with being worried, and there’s nothing wrong with that, and it’s completely normal.

And so, learning to be compassionate in ways that you would be compassionate to a sibling, or a parent, or a best friend – use those same compassionate thoughts and feelings toward yourself.

Improving Life with MPNs: The Latest Research and How to Get Involved

Improving Life with MPNs: The Latest Research and How to Get Involved from Patient Empowerment Network on Vimeo.

Can yoga and meditation help improve life with an MPN? Researchers Dr. Jennifer Huberty and Ryan Eckert share what they’ve learned in their research in complementary medicine and how you can get involved.

Dr. Jennifer Huberty is an Associate Professor at Arizona State University. She focuses her research on the use of complementary approaches to manage symptoms and improve quality of life for patients living with myeloproliferative neoplasms. More about Dr. Huberty here: chs.asu.edu/jennifer-huberty.

Ryan Eckert currently works at Mays Cancer Center, home to UT Health San Antonio MD Anderson Cancer Center. Ryan is the Research Coordinator for the MPN QoL Study Group and assists in research related to complementary health approaches in myeloproliferative neoplasms and other hematological disorders. More about Ryan here: mpnqol.com/research-team.

See More From the The Path to MPN Empowerment

Related Programs:

Can Diet and Exercise Reduce MPN Symptoms?

Am I Meditating Correctly? Getting the Most Out of Mindfulness

Expert Tips for Managing MPN-Related Anxiety


Transcript:

Dr. Huberty:

My name is Jennifer Huberty. I’m an associate professor at Arizona State University in the college of health solutions, and I’m preliminarily a researcher.

I do teach a course a year, but I do research, mostly using complementary approaches delivered digitally, and I focus on cancer patients and also middle-aged pregnancy age lifespan, if you will, of women. So, women’s health and cancer.

Ryan:

My name is Ryan Eckert, and I’m a research coordinator with the Mays Cancer Center, which is at University of Texas Health in San Antonio.

So, in regards to what I’m excited about with the research that we have ongoing, I’m excited about the potential to help improve MPNs’ just quality of life and their well-being in general.

It’s a pretty under-studied area, especially as it relates to MPNs specifically, so there’s been a lot of work over the past couple decades as it relates to pharmacologic and more medicine-derived approaches with MPN patients, and we’re just now kind of realizing that there’s a little bit of a gap in some of the research that we’ve been doing, and there’s some unmet symptom burden needs and quality of life needs among MPN patients, and me, my background is more so in exercise science, and so, I’m all about the complementary approaches and the physical activity-based approaches.

And so, it’s pretty exciting for me to see the field of just cancer research in general, but also the research as it relates to MPN, start to evolve more towards the complementary and alternative approach route as it relates to mindfulness, meditation, yoga, and other physical activity interventions.

Dr. Huberty:

In relation to what I’m excited about with MPN research, I could say ditto to exactly what Ryan just said because he said it very well, and I feel strongly the same, and my background is in exercise physiology, and I’ve been working – helping women and cancer patients adopt physical activity behaviors. But, yoga is a physical activity behavior, but it has this really cool mindfulness component.

And, meditation has this mindfulness component where it’s exciting to see that we can be educating and providing MPN patients with a way to manage their symptoms themselves and rely a little bit less on their physicians in terms of “I’m feeling really anxious. What can I do?” If you’re feeling anxious, we’re giving them the tools that they can use to work on the anxiety themselves.

So, quieting their mind, allowing them to understand that it’s okay to feel anxious, and there’s nothing wrong with them, and if they’re having fears, that that’s normal, and that inviting those feelings and emotions in and just quieting their minds through yoga or meditation is so powerful. And so, I’m really excited about the fact that we’re giving them a tool that’s not just “Here’s a pamphlet, here’s what you should do,” we’re actually providing them an opportunity to practice it, to do it safely in their homes, and we’re also giving them a resource that’s consumer-based.

So, all of our interventions – the yoga and the meditation that we’ve been working on – have been with partners. So, our yoga partner is Udaya.com then, Calm.com, which is the meditation app. And so, these are things that we might provide for patients for free during the study, but when the eight-week or 12-week study is over, typically, any patient, any participant wouldn’t have access to the intervention anymore, but here we are with a consumer-based product that’s available to them.

So, we’ve taught them how to use it, we’ve made them comfortable, we’ve helped them to see that they can see improvements in the way that they feel, and then they have the ability to continue to use this as needed. Symptoms are gonna change over time – less anxious, more anxious, less fatigue, more fatigue, those kinds of things – and this helps them with the ups and downs of symptoms. So, I’m super excited about offering something to the patients that can be a lifelong friend, if you will.

Ryan:

So the MPN quality of life study group is a little bit of an acronym for the myeloproliferative neoplasm quality of life study group, and so, Dr. Mesa has obviously been working in this field of MPN research for decades now, and he had what he used to call the MPN quality of life international study group, and that was basically just a variety of different researchers from the U.S., and also abroad internationally.

Based in the U.S., we have a range of different physicians and researchers across four or five different institutions, and we all tend to focus on very similar research involving MPNs or other blood-related cancers. And so, the MPN quality of life study group is essentially just a collection of those – I think it’s somewhere between 10 and 12 different physicians and researchers that do similar research.

So, in order for patients to find out more about the MPN quality of life study group, they can – so, we do have a website that we just created a little less than a year ago, and it’s just www.mpnqol.com, and if they go there, we just have some information related to what our mission as a group is. We also have a tab on that website that explains all the different researchers and positions that make up the group.

So, if you were interested in, say, a particular researcher or physician, there’s links in there to go to their professional websites, and then, there’s also links within the tab of that website that covers some of the ongoing studies that we have. So, patients can go there, click on that link, and fill out an eligibility survey for a study that they might be interested in, and then, the project coordinator or research assistant will be in touch with them related to their eligibility

Complete Guide To Mindfulness

Suja JohnkuttyHi there ! I’m Suja Johnkutty, MD a conscientious mom and neurologist . My one simple goal is to provide you honest, practical, simple action steps to experience better relaxation in your life. https://betterrelaxation.com

Fertility Preservation in People with Cancer

This podcast was originally published by Cornell Weill Cancer Cast, on March 22, 2019, here.

Living with a Myeloproliferative Neoplasm

This video was originally published by Cancer Support Community on May 26, 2015, here.

 

Know What Your Doctors Know – MPN

This video was originally published by National Comprehensive Cancer Network on May 24, 2018, here.

Experts discussed the treatment and challenges of myeloproliferative neoplasms (MPN) in a live webinar hosted by the National Comprehensive Cancer Network (NCCN) on May 1, 2018.

First New Treatment in a Decade for MF Patients

This blog was originally published by PV Reporter on August 16, 2019, bDavid Wallace, here.

INREBIC provides new, once-daily oral option for patients affected by rare bone marrow cancer

SUMMIT, N.J.–(BUSINESS WIRE)–Celgene Corporation (NASDAQ: CELG) today announced the U.S. Food and Drug Administration (FDA) has approved INREBIC® (fedratinib) for the treatment of adult patients with intermediate-2 or high-risk primary or secondary (post-polycythemia vera or post-essential thrombocythemia) myelofibrosis.1

Celgene Fedratinib FDA approved for Myelofibrosis“The approval of INREBIC is another important milestone for Celgene and underscores our commitment to people living with blood cancers,” said Jay Backstrom, M.D., M.P.H., Chief Medical Officer for Celgene.  “We are excited to provide INREBIC as a new treatment option that may be used in patients with myelofibrosis, including patients previously treated with ruxolitinib.”

“Myelofibrosis can cause patients to suffer in many ways, including experiencing debilitating symptoms,” said Ruben Mesa, M.D., FACP, Director of the Mays Cancer Center at UT Health San Antonio Cancer Center MD Anderson.  “There has not been a new treatment approved for this disease in nearly a decade.  With INREBIC, physicians and patients now have another option available for myelofibrosis.”

The INREBIC development program consisted of multiple studies (including JAKARTA and JAKARTA2) in 608 patients who received more than one dose (ranging from 30 mg to 800 mg),1 of whom 459 had myelofibrosis,1 including 97 previously treated with ruxolitinib.1 The JAKARTA study evaluated the efficacy and safety of once-daily oral doses of INREBIC compared with placebo in patients with intermediate-2 or high-risk, primary or secondary (post-polycythemia vera or post-essential thrombocythemia) myelofibrosis who were previously untreated with a JAK inhibitor, had enlarged spleens (a condition known as splenomegaly), and had a platelet count of ≥50 x 109/L (median baseline platelet count was 214 x 109/L; 16% <100 x 109/L and 84% ≥100 x 109/L).1,2 In the JAKARTA study, spleen volume was reduced by 35% or greater, when assessed from baseline to the end of cycle 6 (week 24), with a 4-week follow-up scan, in 37% (35 of 96) of patients treated with INREBIC 400 mg versus 1% (1 of 96) of patients who received placebo (p<0.0001).1 INREBIC also improved the Total Symptom Score as measured by the modified Myelofibrosis Symptoms Assessment Form (MFSAF) v2.0 diary2 (night sweats, itching, abdominal discomfort, early satiety, pain under ribs on left side, bone or muscle pain) by 50% or greater when assessed from baseline to the end of cycle 6 in 40% of (36 of 89) patients treated with 400 mg, versus 9% (7 of 81) of patients who received placebo (p<0.0001).1

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PV Reporter was the first to report Fedratinib by Celgene, offered on Expanded Access Program for Myelofibrosis patients in November, 2018.

 

MPN Resources

These resources were originally published by MPN Cancer Connection here.

Resources

One of the first recommendations for the newly diagnosed is to see an MPN Specialist. This also applies to patients who have never seen an MPN Specialist. Financial difficulties can make this a difficult task. Before you begin treatment, patients and caregivers should meet with a financial counselor at the facility providing treatment. The counselor will assist in determining coverage and estimate out of pocket expenses. You might also consider an Oncology Nurse Navigator who helps provide support services, coordinates elements of care and helps you learn about additional cancer resources.

Molecular Mutations in MPNs: Impact on Treatment

This video was originally published by MPN Advocacy and Education on March 1, 2018, here.

 

Dr. Jason Gotlib, MD, MS – Molecular Mutations in MPNs: Impact on Treatment