Tag Archive for: MPN care

How to Access Financial Support for MPN Patients

/in , , , , , , , /by

How to Access Financial Support for MPN Patients  from Patient Empowerment Network on Vimeo.

Is there financial help for patients living with ET, PV, and myelofibrosis? MPN specialist Dr. Joseph Scandura shares advice and resources to ease the financial burden of care and treatment. 

Dr. Joseph Scandura is Associate Professor of Medicine and Scientific Director of the Silver MPN Center at Weill Cornell Medicine. Learn more about Dr. Scandura, here.

 

Related Programs:

 
Finding an MPN Treatment Approach That Is Right for You

Finding an MPN Treatment Approach That Is Right for You

 Thriving With an MPN | Tips for Managing Worry and Anxiety

Thriving With an MPN | Tips for Managing Worry and Anxiety

 How Should You Participate in MPN Care and Treatment Decisions?

How Should You Participate in MPN Care and Treatment Decisions

Transcript:

Katherine:

We’d be remiss if we didn’t bring up financial concerns, treatment and regular appointments can really become quite expensive. Understanding that everyone’s situation is different, of course, where can patients turn if they need resources for financial support? 

Dr. Scandura:

Yeah. It depends on what the issue is. So, one of the biggest areas that I found this can interfere with care is when we have copays that are really not reasonable and not affordable. And so, how do we fix that? How do we get access to an agent that might be beneficial for a patient but that – you know, and the insurance has approved it, but they’ve approved it with such a high copay that it’s just not an option anymore.  

And so, there are foundations. The PAN Foundation, we often will reach out to for copay assistance. And, actually, many companies have copay assistance programs for their individual drugs. And so, we have some of our nurses who are quite good at navigating these different agencies, and some of them are kind of drug-specific.  

And because we see a lot of patients with MPNs and the number of drugs is not that great, we’re pretty tapped into what are the options for copay assistance that might be helpful. And it often works. It doesn’t always work. I had a patient I saw pretty routinely, and I kind of like my certain group of labs that kind of make me feel like I have a good sense of what’s going on. But he was getting killed with the lab costs. And he mentioned this to me, and then I have to do what I tell my – I have three teenage daughters, right? And, when they were littler – smaller, younger, we spent a lot of time distinguishing needs from wants, right?  

So, this was one of those instances. What laboratory do I need to make sure that this patient is safe? What do I want because it makes me feel like I have a better idea of what’s going on? And maybe I can back off on those wants if I’m seeing the patient pretty frequently, which I happen to be at that time. And so, some of that is a conversation.   

And it depends on the specifics of the insurance and a little bit of back and forth and knowing how to kind of minimize that financial burden when that’s starting to compromise care. 

How Can Patients Navigate Care and Thrive With an MPN?

/in , , , , , , , /by

How Can Patients Navigate Care and Thrive With an MPN?  from Patient Empowerment Network on Vimeo.

What does it mean to thrive with an MPN? Dr. Jeanne Palmer, an MPN specialist from the Mayo Clinic, shares advice on navigating MPN care and stresses the importance of communicating openly with your healthcare team.

Dr. Jeanne Palmer is a hematologist specializing in myeloproliferative neoplasms (MPNs) and bone marrow transplant at the Mayo Clinic in Arizona. Dr. Palmer also serves as Director of the Blood and Marrow Transplant Program and is Vice Chair and Section Chief for Hematology. Learn more about Dr. Palmer, here.

 

Related Programs:

 
Understanding Treatment Options for ET, PV, and Myelofibrosis

Understanding Treatment Options for ET, PV, and Myelofibrosis

 How Should You Participate in MPN Care and Treatment Decisions?

How Should You Participate in MPN Care and Treatment Decisions?

 How Treatment Goals Impact MPN Treatment Decisions

How Treatment Goals Impact MPN Treatment Decisions

Transcript:

Katherine Banwell:

What does it mean to you to thrive with an MPN?

Dr. Jeanne Palmer:

I think living with an MPN can be very difficult. I think there is a number of things. First of all, there’s always the worry of what’s going to happen in the future. Many of these MPNs can start as fairly, for lack of a better term, as benign issues and can convert to something much more serious. So, I think living with that sort of timebomb in the back it can be extremely stressful. So, figuring out how to live with the fact that there is some degree of uncertainty.

I think the other thing is making sure to understand your disease. These are very rare disorders and even if you go to a hematologist-oncologist specialist, a lot of times they don’t have all the information because they don’t see a lot of them every year. So, it’s really important to make sure that above and beyond that you understand what’s going on in your body so that when new things happen, new symptoms happen, you’re able to really address them as opposed to sort of living with something that may make you feel poorly that’s not being addressed.

So, again, I think the biggest piece of this is seeing how do you live with uncertainty and how do you make sure you understand your disease well enough that you know what’s going on in your own body. 

Katherine Banwell:

Patients can sometimes feel like they’re bothering their healthcare team with their comments and questions. Why do you think it’s important for patients to speak up when it comes to symptoms and side effects?

Dr. Jeanne Palmer:

Well, there is a lot of things. This is a disease, again, that we can direct our therapy many times towards symptoms, and so when we think about how do I direct my therapy, so how do I treat somebody, symptoms are an incredibly important part of it. And there is nothing worse than having a patient come and see me who I see every six months, because they’ve been pretty stable and they’re like, “Oh, for three months I’ve been feeling awful.” And you’re like, well, “Why didn’t you let me know, we could do something about this?”

So, if there is something that doesn’t feel right, it’s very, very important to talk to your healthcare provider. I would much rather be bothered and handle something earlier on than miss something and really have a lot more catch-up to do afterwards.

The other thing is symptoms may indicate a blood clotting event. We know that patients will have a higher risk of blood clotting. These are extremely important to identify early on because if they go unchecked, they can cause more damage. 

Katherine Banwell:

Dr. Palmer, was we close out this conversation I wanted to get your thoughts on where we stand with progress in helping people live longer and truly thrive with MPN. What would you like to leave the audience with?

Dr. Jeanne Palmer:

So, I think that the first thing is make sure you understand your disease. Don’t hesitate to ask for a second opinion. It’s always good to make sure you talk to someone who can really explain so you feel like when you go home you understand what’s going on in your body. Make sure you understand what symptoms to look for, what things to be aware of, because a lot of times people come in and they have no idea that, oh, these symptoms are actually related to their disease.

The other thing to make sure is that you’re very honest with your provider on how you’re feeling. A lot of times people come in and they say, “Oh, how are you feeling?” “I feel fine,” but then they start to ask very specific questions and they’re like, “Oh yeah, I’m really tired, my fatigue is an 8 out of 10,” or something.

So, make sure you’re really honest with your provider. When they ask you how they’re doing, this is not a social visit, this is a visit where they need to know your symptoms, so you don’t need to say I’m fine like you normally would if you were walking down the street.

The next thing is to always make sure to know where there’s clinical trials because we are making enormous great leaps and bounds in this field. It’s a really exciting time for myeloproliferative diseases, and there’s a number of new drugs that are being tested and coming out. So, it’s always important, if the opportunity is available and you can do it, clinical trials are a great way to get treatment.

Plus, you are giving back, because these are things that help us learn whether something works or not. So, you’re not as much a guinea pig, you never get a sugar pill. It’s one of those things will you will always get the treatment you need and then they may add something to it or you may be in the situation where there is no treatment, so they try something.

But clinical trials, I have to emphasize, are a great way to get therapy and really are how we know everything that we know about treatment for these diseases.

Katherine Banwell:

Yeah. It sounds like there’s a lot of progress and hope in the field.

Dr. Jeanne Palmer:

Oh, absolutely. 

Patient and Care Partner Discuss Value in MPN Care

/in , /by

Patient and Care Partner Discuss Value in MPN Care from Patient Empowerment Network on Vimeo.

 MPN Empowerment Leads Jeff and Summer talk about how they define value in Summer’s care. For instance, one important thing that brings value to them is how accessible their healthcare team is. Watch now to hear more about what they value on Summer’s journey with myelofibrosis.

Transcript

Jeff:

Alright Summer, I’m just looking at the bill for your last doctor’s appointment.

Summer:

Wow.

Jeff:

Do you think we get good value for our money? Oh. Hi, I’m Jeff.

Summer:

HI, I’m Summer.

Jeff:

And we’re your Patient Empowerment Network Network Leads for myelofibrosis. And we’re here to talk to you today about how do you define value for your healthcare dollar. What do you think is important for healthcare dollars, Summer?

Summer:

Well, really important is that the doctor and all the medical staff really listen to the patient and really aware of how the patient is doing everything. Also, that they need to explain because my doctor will come up with little charts with funny little numbers on them and something about blasts which doesn’t have anything to do with blasting like having fun. So, she’ll come out with that and explain all that.

Also, to let you know what’s going on with your medication. Where I get my medication is Walgreens Specialty Pharmacy and they’re very good. They always call me about any changes. They let me know when the order’s in. They always offer to delivery it, but I don’t think that’s a very good idea so I do pick it up.

Also, that they see the patient as an individual and respect their individuality. For example, I’m big on mind-body connection. I think there’s a huge connection doing exercise daily, eating pretty good, but I do like my sweet treats too. I don’t give that up. And Zelda, she just likes to lay around, and that’s what she enjoys. Don’t you, baby?

Jeff:

Well, a couple of things that I think are important for your value for your healthcare dollar, one is accessibility. Is your doctor easily accessible? And with the UCSD system that we’re on, we have great accessibility. They have a wonderful patient portal on the web that you can go and find out all of your results. I don’t have to keep a book of past blood test results because it’s all on the web and I can see it. And if we want to get in touch with them, there’s a way to send them a message and  they get in touch with us within the day for sure. And we can make an appointment that way. It’s really, really a good system. So, accessibility is one thing that’s really important.

Another thing is availability of specialists. Myelofibrosis is a very, very rare and unusual disease and there aren’t a lot of specialists in the whole country. We’re truly blessed to have Dr. Tanaka who is a researcher and a specialist is myelofibrosis and myeloid diseases be on call when Summer showed up at the hospital with her first incidence that led to this diagnosis. And UCSD has a number of doctors that are specialists, so we are fortunate. But you need to find a healthcare system where you have enough specialists.

And the final thing that I can think of is, you need to be your own advocate. The doctor is doing the best they can, he or she can, to solve your problem and to work within what they think is normal standard, normal practice, but they’re not mind readers. They can’t understand what is concerning you. You need to speak up, ask questions, and let the doctor know your concerns so they can address them. That’s the patient’s job as opposed to the healthcare system or the doctor’s job. Speak up.

So those are some of the ways we define value in our healthcare ‘Til next time, I’m Jeff.

Summer:

Summer. Zelda.

How Can MPN Patients Become More Proactive in Their Care?

/in , , , , , , , /by

How Can MPN Patients Become More Proactive in Their Care? from Patient Empowerment Network on Vimeo.

How can MPN patients become more empowered and active in their care? Dr. Claire Harrison from Guy’s and St. Thomas’ Hospital in London shares advice for patients to gain confidence to become a more active participant for optimal care.

See More from Best MPN Care No Matter Where You Live

Related Resources:

How Are MPN Treatments Changing for Low-Risk vs High-Risk Patients?

 
 What Are the Unmet Needs in Access to MPN Care?

 Advice for Hesitant MPN Clinical Trial Participants

Transcript:

Dr. Nicole Rochester: 

So what advice would you give for patients so that they can really take a proactive approach to their healthcare and feel more confident in talking about their concerns and communicating with their healthcare team, you’ve shared with us how important that is. Do you have maybe two or three specific tips or maybe questions that every MPN patient should ask their healthcare provider?

Dr. Claire Harrison: 

I think the first thing to say is, in my personal view is you do not have to be under an MPN expert to get the best care. I know some people differ with regard to that, but these are chronic conditions, there are national and international guidelines, clinicians are connected. We all talk about patients over time, as we like to do that, we like to get the best for our patients, so a local center with a clinician who you trust, who you get on with…where you can get there easily. You trust their team, you know their logistics work for you, maybe it’s a nurse who work who you get on with, well, who comes to the appointment with you, that is just as good as being under the best professor in the state, where you might not actually see them  when you turn up and go to the unit, so that’s really important, understanding your condition, and if you don’t understand being empowered to ask questions, and if you’re in a position where you can’t ask a question, something’s wrong. So don’t be afraid, take somebody with you, write it down. 

Sometimes it can be a mistake to do a troll on the Internet, so I wouldn’t always encourage that because what’s on the Internet is not always accurate, but go to a trusted website as the clinician…where can I go to find out more information? Some patient advocacy groups run buddy systems that can also be very helpful and it can be very empowering to meet another patient with the same or similar condition, so I think those are all helpful tips from my perspective, also don’t expect to get all the answers all the time, it can be really tricky as a clinician, maybe you get a patient who comes with a big long list of questions, and say What is your top question that you really want answers to. 

Dr. Nicole Rochester:

Those are awesome, awesome tips. I’m just going to repeat a few of them, just to highlight, you mentioned prioritizing your concerns which is incredibly important, and acknowledging that the clinician doesn’t have unlimited time, and so really focusing on the things that concern you the most, you mentioned bringing a buddy to appointments, which is something I fully endorse, so that there’s someone else that’s taking notes or…it can be your eyes and ears during that appointment, things that you may have missed either because of anxiety or stress, and you mentioned writing things down, taking notes, even as the patient asking questions, which is so incredibly important, and really the way that I feel patients demonstrate their involvement in their disease and being an active member of the team, so I really, really appreciate those tips, Dr. Harrison, I think that you have given us so information, so much information about how to empower MPN patients and their families so that they can really get the best care at the outset. 

What Are the Unmet Needs in Access to MPN Care?

/in , , , , , , , /by

What Are the Unmet Needs in Access to MPN Care? from Patient Empowerment Network on Vimeo.

Which areas of MPN care still need improvements to access? MPN expert Dr. Claire Harrison from Guy’s and St. Thomas’ Hospital in London explains patients who still experience barriers to care and what can be done to reduce access issues.

See More from Best MPN Care No Matter Where You Live

Related Resources:

How Can MPN Patients Stay Up to Date With New Treatments?

 MPN Treatment Strategies for Patients Who Have Failed Traditional Therapies

 Advice for Hesitant MPN Clinical Trial Participants

Transcript:

Dr. Nicole Rochester: 

What would you say are the unmet needs in access related to MPN and care, specifically as it relates to clinical trials, and what can we do to address those unmet needs?

Dr. Claire Harrison: 

Well, I think there is a problem with rare diseases in terms of geographical access to trials, and we often find patients have to travel a long way. I know that’s true in North America as well as in Europe. And we’re very lucky in our geographical locations, but in some parts of the world, some companies or doing not open clinical trials, so I think there’s an access issue. 

I think also there is something about patients have to meet rigid entry criteria for clinical trials, and so oftentimes in myelofibrosis, for example, commonly patients who fail ruxolitinib (Jakafi) have a lower platelet count, and that is often an exclusion criteria. Those criteria are there to try to get a uniform population of patients in a trial, but it can feel like you’re excluded as a patient, and it can feel very tough and for your health care team that we can’t include you in a clinical trial. We also have to remember that it is there for safety purposes, so if there is a lower limit for platelet count, that’s often because the drug might affect platelet count. It is really important that we have a broad spectrum of trials available and that we try to increase the availability of trials for patients. 

I also want to say a word about inequality of access and thinking about accessing some different ethnicity, so often non-white MPN patients are under-represented in clinical trials, and I know that a focus in the UK and also in North America as well. And it is really important that patients have access to a clinical trial if they need it, and also that we understand how investigational products will work in people of different backgrounds. So for example, we know that probably, Nicole, your blood count assuming it’s a healthy, normal blood count may well be different from mine for background, racial genetic differences, so drug metabolism might be different, so this is really important, and we need to work hard as a community, the clinical community and the patient community to raise awareness and improve access for patients. 

Dr. Nicole Rochester: 

Well, as someone who does a lot of work in health equity, Dr. Harrison, I really appreciate you pointing that out. It’s certainly an issue here in the United States, as you mentioned, differential access to clinical trials, and we’ve learned that not only our patients, often not aware, but often the providers, at least here in the U.S., are not offering clinical trials as an option for patients from marginalized and minoritized communities. So I really appreciate you bringing that up. 

Five Tips to Participate in MPN Care and Treatment Decisions

/in , , , , , , , , , , , , , , /by

How can myeloproliferative neoplasm (MPN) patients become more active in their care? In the “How Should You Participate in MPN Care and Treatment Decisions?” program, expert Dr. Abdulraheem Yacoub of the University of Kansas Cancer Center shares five key tips MPN patients can take for a more active role for optimal health outcomes.

1. Become a Patient Self-Advocate

It’s vital to have the ability to advocate on your own behalf no matter your age at diagnosis. And some MPN patients will be diagnosed at a relatively young age and will have different MPN care providers over the course of their disease. These patients need to get accustomed with the idea of care approaches changing over time.

2. Get Involved and Build Your Village

Being involved in your well-being as a patient is of utmost importance, and thinking about your support network is recommended as one of your early steps as a patient. Think about who among your friends, family, co-workers, and spiritual community might be able to help support you – and ask your MPN care provider about support resources if you need some additional help.

3. Bring a Friend or Loved One to Appointments

It’s important to have someone else at your appointments with you to help understand the information you receive and to also take notes and to ask questions if it’s helpful for you. Having a second set of ears is especially important with your early visits about treatment options, and the use of telemedicine makes it easier for loved ones to help support your appointments.

4. Get a Second Opinion

Second opinions are no longer the taboo that they were once perceived as. Listen to medical facts given to you from your MPN specialist and from your primary treating physician. And if you want a second opinion from another MPN specialist, this practice is easier to carry out now through telemedicine.

5. Seek Out Credible Resources and Research News

Keep yourself informed about the latest MPN research and treatment news by visiting credible online resources. In addition to PEN, check The Leukemia & Lymphoma Society (LLS) and MPN Research Foundation. The annual meetings of expert conferences like the American Society of Hematology (ASH) and American Society of Clinical Oncology (ASCO) bring research updates for MPN online resources to cover.

By taking a more active role in their care, MPN patients can help determine the best care and treatment plan for optimal health outcomes.

What Is the Role of AI in Telemedicine for MPNs?

/in , , , , , /by

What Is the Role of Artificial Intelligence (AI) in Telemedicine for MPNs? from Patient Empowerment Network on Vimeo.

How does artificial intelligence (AI) fit into the myeloproliferative neoplasm (MPN) care toolbox? Dr. Kristen Pettit from Rogel Cancer Center explains the current role of AI, her hopes for the future of MPN care, and what she considers the ideal model for MPN care.

See More From the MPN TelemEDucation Resource Center

Related Resources:

Does Remote Patient Monitoring Mean for MPN Patients?

 MPN Treatment Tools and Advancements

 How Does Artificial Intelligence (AI) Improve MPN Patient Care?

Transcript:

Dr. Kristen Pettit:

I think the role of artificial intelligence and telemedicine in MPN fields is going to be evolving over the next few years. I think one thing that will be very interesting that I’m very interested in seeing is whether we’re able to incorporate things like data from wearable devices, for example, like your Apple Watch or those sorts of devices directly into your healthcare to be able to monitor you on a more continuous basis and virtually, I think more things of that nature will be coming over the next couple of years.

I think that incorporating telemedicine into MPN monitoring is a relatively safe thing to do for most patients, very rarely things will come up in an in-person visit that might not have been reported or caught on a telemedicine visit, for example, slight changes in spleen size that we may be able to feel in the office that might not be symptomatic to the patient at home or might not be noticed at home could happen. Other things like weight loss that a person might not necessarily have noticed at home, but that we would hopefully pick up on it.

An office visit might be another thing to think about, but both of these situations, I think are relatively uncommon, I think the most important thing is for a patient and their family members to know their body, know their symptoms, keep an eye out for any changes, while they’re at home, and as long as that’s being done, really, I think telemedicine is relatively safe to incorporate in MPN care. Ideally, I think that would be done sort of intermittently or alternating between virtual visits and in-person visits with an individual patient.

New Developments in MPN Care

/in , , , , , /by

New Developments in MPN Care from Patient Empowerment Network on Vimeo.

Does myeloproliferative neoplasm (MPN) care have new developments? Dr. Kristen Pettit from Rogel Cancer Center shares MPN research updates she hopes to hear about at ASCO 2022.

See More From the MPN TelemEDucation Resource Center

Related Resources:

What Is Chronic Neutrophilic Leukemia?

 Understanding What ECG Monitoring Tools Mean for MPN Patients

Transcript:

Dr. Kristen Pettit:

Yeah, so the ASCO 2022 meeting will certainly be exciting for MPNs, I’m expecting the abstracts haven’t been selected yet as of the time we’re discussing this, so I’m not sure exactly what’s going to be discussed. But what I’m hoping to hear more about is the investigational JAK inhibitor momelotonib for patients with myelofibrosis, specifically those with anemia, I’m hoping to see more results about that.

I’m hoping to hear more about the up-front combination studies that are ongoing in myelofibrosis, so JAK inhibitors plus novel agents compared to JAK inhibitors alone as the first treatment option for patients with myelofibrosis. I’m hoping we get some interim results or updated results from some of those ongoing studies, and I’m hoping to hear more about some of the later line treatment options for patients with myelofibrosis as well.

There are a lot of exciting things going on out there, and we’ve gotten a couple of great updates over the last year, for example, at the ASH meeting in December, and I think we’ll get some more exciting updates at ASCO in May and June.

Are Mobile-Optimized Tools Impacting MPN Care?

/in , , , , , /by

Are Mobile-Optimized Tools Impacting MPN Care? from Patient Empowerment Network on Vimeo.

How is myeloproliferative neoplasm (MPN) impacted by mobile-optimized tools? Dr. Kristen Pettit from Rogel Cancer Center shares digital education resources and patient education websites to aid in MPN patient support and education.

See More From the MPN TelemEDucation Resource Center

Related Resources:

What Does Teleoncology Mean for Myeloproliferative Care?

 What Is Chronic Neutrophilic Leukemia?

 Understanding What ECG Monitoring Tools Mean for MPN Patients

Transcript:

Dr. Kristen Pettit:

There are a wealth of resources online in the MPN world, there are a number of different digital education resources that have expanded even with COVID, a lot of patient education materials that are out there on various different websites, from the Patient Empowerment Network to the MPN Research Foundation and MPN Advocacy & Education International.

There are also symptom trackers that can be very helpful to where you can enter your individual symptoms as often as you want to and get a more objective number to follow how you’re feeling over time and see how things may be progressing over time.

Why Is Specialized Care Important for MPN Patients?

/in , , , , , /by

Why Is Specialized Care Important for MPN Patients? from Patient Empowerment Network on Vimeo.

Specialized myeloproliferative neoplasm (MPN) care is an option for many patients. Dr. Kristen Pettit from Rogel Cancer Center explains various ways that specialized MPN care can benefit patients and MPN conditions that specialists are commonly trained in.

See More From the MPN TelemEDucation Resource Center

Related Resources:

What Does Teleoncology Mean for Myeloproliferative Care?

 Notable New MPN Treatments

 Understanding What ECG Monitoring Tools Mean for MPN Patients

Transcript:

Dr. Kristen Pettit:

I do think it’s important for patients to have an MPN specialist in their corner when they’re living with an MPN, that things are moving very quickly in the MPN fields in all areas, from diagnosis to risk stratification, to treatment and management over time, as well as monitoring.

So I think having someone who focuses specifically and only on MPN to is up-to-date on the most recent literature and the most recent advances, I think is an important thing, even if that’s somebody that you only maybe see either in person or virtually once a year, once every other year, or just have available if anything changes in your disease course.

So most MPNs specialists are certified in both hematology and oncology, but most focus on really all of the MPNs, these are relatively rare conditions, so most MPNs specialists will focus on ET, PV, myelofibrosis, other rare MPNs such as chronic neutrophilic leukemia, and sometimes some of the other myeloid malignancies such as myelodysplastic syndrome, for example, but your MPN doctor most likely focuses on all of those different disorders and would be able to manage your care if heaven forbid, things progress down the road from one of those MPNs to another.

What Do Biosensors Mean for Myeloproliferative Care?

/in , , , , , /by

What Do Biosensors Mean for Myeloproliferative Care? from Patient Empowerment Network on Vimeo.

Myeloproliferative neoplasm (MPN) patients can benefit from recent advances in medical uses of biosensors. Watch to learn about biosensor medical advances, advantages for MPN care, and future developments from biosensor use.

See More From the MPN TelemEDucation Resource Center

Related Resources:

What Does Wearable Technology Mean for Myeloproliferative Care?

 What Is Precision Medicine for MPNs?

 Why Is Specialized Care Important for MPN Patients?

Transcript:

Though biosensors may be more well-known for their use in testing for food and water contaminants, they have emerged for a variety of medical uses as well. Biosensors may be used by healthcare providers in patient monitoring, screening for infections, health management, and disease treatment.

For MPN patients, biosensors can aid in several aspects of their care. Biosensors can detect viruses and bacterial threats, track exercise levels and body chemistry remotely, detect harmful chemicals, track disease progression, and share health information between patients, providers, and anyone else whom a patient authorizes. All of these biosensor capabilities provide for more precise, personalized, and optimal care for each patient.

As biosensors evolve even more over time, they will continue to help refine healthcare. MPN patients can expect even more personalized care than are already offered, and quality of life during treatment should also improve since biometrics more accurately gauge factors like disease progression and treatment progress.

Please remember to ask your healthcare team what may be right for you.

What Does Teleoncology Mean for Myeloproliferative Care?

/in , , , , , /by

What Does Teleoncology Mean for Myeloproliferative Care? from Patient Empowerment Network on Vimeo.

 Myeloproliferative neoplasm (MPN) patients can benefit from various aspects of teleoncology. Watch to learn about teleoncology, benefits for MPN patients, and potential future developments with teleoncology.

See More From the MPN TelemEDucation Resource Center

Related Resources:

What Does Wearable Technology Mean for Myeloproliferative Care?

 What Is Precision Medicine for MPNs?

 Why Is Specialized Care Important for MPN Patients?

Transcript:

Teleoncology carries out clinical oncology remotely and can cover all aspects of oncology care including cancer diagnosis, treatment, and follow-up phases for patients. As with other cancer types, MPN patients can benefit from many aspects of teleoncology.  

Teleoncology is a more targeted part of telemedicine, which is especially beneficial for MPN care. Teleoncology provides more frequent monitoring of symptoms, treatment side effects, physical functions as well as easier patient access to lab tests and protecting patients from extra exposure to viruses and infection risks.

With the evolution of treatments that can now be delivered via convenient methods like wearable patches, the future of teleoncology looks promising. MPN patients will have fewer visits for their treatment and can enjoy a higher quality of life with more frequent remote check-ins with their MPN specialist.

What Is the Role of Next-Generation Sequencing in MPNs

/in , , , , , /by

What Is the Role of Next-Generation Sequencing in MPNs? from Patient Empowerment Network on Vimeo.

 Myeloproliferative neoplasm (MPN) patients can take advantage of a medical advancement called next-generation sequencing. Watch to learn about next-generation sequencing, what it means for MPN patient care, and potential future developments from next-generation sequencing.

See More From the MPN TelemEDucation Resource Center

Related Resources:

Does Remote Patient Monitoring Mean for MPN Patients?

 MPN Treatment Tools and Advancements

 How Does Artificial Intelligence (AI) Improve MPN Patient Care?

Transcript:

Next-generation sequencing is a DNA analysis process that allows for sequencing of a portion of a patient’s genome. The process allows for processing of multiple DNA sequences in parallel. Next-generation sequencing also can identify hereditary cancer mutation carriers, cancer mutations, and other things.

Next-generation sequencing is another medical advancement that helps improve MPN patient care. By identifying cancer mutations and hereditary cancer mutation carriers, next-generation sequencing helps oncologists to further refine targeted therapies and personalized medicine – leading to optimal patient care.

As more research continues in next-generation sequencing, it’s possible that new genetic mutations will be discovered to further enhance quality of life with patient symptoms and treatment side effects.

Please remember to ask your healthcare team what may be right for you.

Health Educator Turned MPN Patient Speaks to Importance of Specialized Care

/in , , , , , /by

Health Educator Turned MPN Patient Speaks to Importance of Specialized Care from Patient Empowerment Network on Vimeo.

Myeloproliferative neoplasm (MPN) patient and health educator Julia Olff helped others navigate the healthcare system before her diagnosis with myelofibrosis and later with ET. Watch as she shares her unique experience and how finding MPN specialists can help patients in receiving optimal care.  

See More From the MPN TelemEDucation Resource Center

Related Resource:

Transcript:

Julia Olff:

Well, as a health educator and as a former hospital administrator when I was diagnosed with myelofibrosis, I feel like I had a particular reaction to the diagnosis that might be different from others who didn’t work in healthcare. I was both fascinated, which may sound really bizarre, that I was being diagnosed with an illness that I did not feel. Also, an illness I had not heard of, although I knew about some of the treatments that might be proposed because of my work as a health educator. So, I feel like I kind of went into health educator mode and health navigator mode, and that gave me a leg up in terms of knowing very early on, that once my ET transformed to myelofibrosis, I knew that I needed to see an MPN expert. And because I worked on health education because I worked in hospitals, I understood that I want, I needed to see a physician who had a depth of expertise, who had a volume of patients, who had a lot of experience with the drugs that existed. Although, in 2008, there was no approved, drug for myelofibrosis, but I knew I needed to go to the place where there was…

Where I had a better chance of getting the latest treatment, and I was diagnosed by a community oncologist who was lovely and one of the nicest people, and one of the nicest physicians I’ve seen, but it was clear he was not steeped in MPNs, because he treated patients across a spectrum of cancers. So, in that way, I think I started out in a different place, I also know that hospitals and healthcare can be very overwhelming, and I had a bit of the language and the world and some of the sort of…I understood a little bit more, I think about what my physicians might have been sharing with me, and if I didn’t, I felt empowered and not that this is easy by any stretch and it continues to be a challenge, but I knew that I needed to ask questions. I knew that I needed to read more about my illness, I knew I needed to vet my doctor as well, and I also figured out over time that as I was going to have this illness, hopefully in the sense that I hope I continue to live well with myelofibrosis and stay alive, that I was going to be seeing an MPN expert for a long time.

So, I think that influenced my point of view, I kind of take it as a job, so as to my personality, so I have a health notebook, I need to have one from the very beginning, I knew I couldn’t remember everything, I had to write it down. I knew I had to track what I was feeling so I could share it with my doctor, and I knew that from being a health educator, I think no one told me to do those things, and certainly, physicians don’t really know to tell you that, so I think in a lot of ways, I was approaching my illness in a very serious manner because I had experience in healthcare, and the last comment I’ll make is, I think from navigating the system, navigating health insurance, I knew a little bit from my experience as a caregiver already, and also from a health educator, I understood this is another area where I needed to empower myself or ask questions, or not take some of the information that may have been shared with me initially as on face value, that it was okay to ask more. As I said, I’ve had this illness for 13 years, I’ve also been caregiving for an adult child with illness, and every time I call the insurance company to ask a question about an explanation of benefits or why something isn’t covered, and learn a tiny bit more, and I add that to sort of my toolkit. 

Making Lifestyle Changes When Living With an MPN

/in , , , , , , , /by

Making Lifestyle Changes When Living With an MPN from Patient Empowerment Network on Vimeo.

 As a myelofibrosis (MF) and essential thrombocythemia (ET) patient, Julia Olff has experienced lifestyle changes in her MPN journey. Watch as she shares changes she made with her work life and eating habits and the impact on her well-being as an MPN patient.

See More From the MPN TelemEDucation Resource Center

Related Resource:

Transcript:

Julia Olff:

I’ve definitely made many lifestyle changes since I’ve been diagnosed with ET and then myelofibrosis. The biggest change came when I needed to give up full-time work and began to work on a very part-time basis, so that’s been the most monumental change, and it really came about because of how unwell I was feeling, how much pain I was going through at the time, I also had a mini-stroke and became more involved in is hospitalized that I needed more treatment than I was seeing more…more specialists for a short period of time, and my husband and I recognized that to maintain my well-being, I needed to step off of the 50-hour week plus travel job that I was doing, so that was a really big change and that continues to influence my life, however, I’ve found a lot of positives in that I’m fortunate that I’ve been able to financially sustain my life while working part-time and find other aspects of my life that are fulfilling. For example, I volunteer a lot more. I’ve made changes in the way that I eat and the way that I sleep, so myelofibrosis has certainly caused a lot more fatigue over the years. And while when I was working full-time, I don’t think I was getting the amount of sleep that I really needed, and fatigue started to really weigh on me, and I remember driving and just feeling like, “Oh my God, I can’t do this,” so I make sure that I go to bed much earlier than I used to and try to wake up about the same time every day, and it’s also helped with some of the insomnia that I know people with myelofibrosis on the flip side, have with the fatigue. I’ve been hospitalized a few times for colitis, and there are all sorts of potential for bleeding with myelofibrosis, and we’re not sure that that was related, but I learned that I needed to change the way I was eating, and I can’t say that I did it immediately.

It took seeing a gastroenterologist, who evaluated all of my records and several more colonoscopies to get and the terrible, terrible pain of colitis to realize I needed to change the way I was eating, and I also had some weight gain with one of the medications that I was on…and so I enrolled in Weight Watchers, which I found to be incredibly helpful to help me lose some weight and did help me pump up the fruits and vegetables in my diet, especially when I learned you can eat lots of those…but less of other things. So those are some of the changes. And the last one I say is really learning to pace myself and to not overdo it, and that’s a longer learning process, I think, and figuring out that you don’t have the same kind of energy that you had pre-illness, where you can kind of push your day…you can do one more thing, one to one more place, add one more task to do is when you’re out, I’m much more of a planner, and I allow myself much more time to get things done, and I spread them out over several days, what I might have done in one day in the past.