Tag Archive for: MPN Specialist

Why Is Specialized Care Important for MPN Patients?

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.

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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.

Should MPN Patients and Their Families Continue Telemedicine?

Should MPN Patients and Their Families Continue Telemedicine? from Patient Empowerment Network on Vimeo.

Can myeloproliferative neoplasm (MPN) patients still get value from telemedicine? Dr. Kristen Pettit from Rogel Cancer Center explains some of the pros and cons of telemedicine visits and ways to optimize MPN patient care.

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Dr. Kristen Pettit:

I think telemedicine has been one of the few good things to come out of the COVID era. There are pros and cons, certainly, some pros are that patients can have increased access to their physicians and their medical teams, particularly the MPN specialty centers that might not be right in their backyard. It’s great, it’s a great way to be able to stay in touch with an MPN specialist.

The less travel, less waiting in a waiting room. Those are all great things, the cons, the downsides to keep in mind are that virtually we can’t feel for spleens, so it’s difficult to tell if the spleen is starting to get enlarged. There can also be some logistical challenges getting blood counts drawn and interpreted before a telehealth visit. But with those minor challenges, I think telemedicine is here to stay, and I think it’s an important part of the care for patients with MPNs. 

Remote monitoring is very important for patients with MPNs, really the most important thing, in my opinion, for patients with MPNs being monitored over time is for them to keep an eye on their symptoms over time, watching for any changes in their bodies that they may feel as far as their spleens feeling more enlarged or feeling more full, or losing weight unexpectedly, feeling more fatigued, any of their MPN symptoms getting worse. All of those are easy to monitor at home, virtually, and to report back to your physician over telehealth or at routine visits.

What Does Teleoncology Mean for Myeloproliferative Care?

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.

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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.

Expert Advice for Finding an MPN Clinical Trial

Expert Advice for Finding an MPN Clinical Trial from Patient Empowerment Network on Vimeo.

Dr. Andrew Kuykendall, an MPN specialist and researcher, shares tips for learning about available clinical trials. Dr. Kuykendall emphasizes the importance of seeking a consultation with a specialist and suggests questions to ask your provider about clinical trials.

Dr. Andrew Kuykendall is an Assistant Member at Moffitt Cancer Center in the Department of Malignant Hematology. Dr. Kuykendall’s clinical and research efforts focus on myeloproliferative neoplasms (MPNs), MDS/MPN overlap syndromes and systemic mastocytosis (SM). Learn more about Dr. Kuykendall, here.

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How can patients find out about clinical trials? Are there specific questions that they should be asking their doctors about to participate in a trial?

Dr. Kuykendall:

Yeah. I think it’s tough. One way – there are a few different tools that I would recommend. One, if you’re very interested in just what trials are going on you can go to this national cancer trials, or NCT, network and try to understand online what trials are available. Clinicaltrials.gov is the actual website but that’ll show you the ongoing clinical trials that are there.

You can type in a disease state, so you can type in polycythemia vera or myelofibrosis or essential thrombocythemia, and it’ll give you a huge list of all the trials that are there. It can be kind of overwhelming because it’ll list all of the trials that have ever been done, but there are different ways that you can stratify those results and look for trials that are just recruiting that are active and that’ll taper down that list. And when you click on those trials there usually is at the bottom a list of participating centers that are there. So, you can see the different centers that are there. Overall, I think that that is a very broad way of doing it and somewhat complicated.

What I would ask is – and one of the things that we always push for is – while most of these myeloproliferative neoplasms can be treated quite easily in the community, meaning that the actual mechanisms of what’s being provided is not something that requires a specialized center. I think the understanding of the disease really does. We always recommend having someone in your corner who’s an expert. They don’t have to be the one who is most involved in your care but having someone in your corner who’s an expert.

That’s the person who’s going to know what trials are going on, what trials may be coming down the pipeline, where those trials may be occurring, and they might also tell you “Okay, here are the things that would prompt you to maybe want a trial.” I had a lot of patients that were surprised to realize there were trials available just because they had – they were getting six or seven phlebotomies a year. They were complaining about that but they figured that was just the ways things were. Lo and behold, there was actually a trial that was ongoing that was trying to reduce the need for those phlebotomies in otherwise low-risk patients.

You can always go to clinicaltrials.gov but also try to ask your doctor about hey is there, if you haven’t seen an expert, is there someone close by an expert that I can see for a second opinion just to understand the disease and ask about trials. Usually everyone’s okay with that and when you do see an expert, say “Hey, first of all what trials are right for me now and what in the future might be reasonable and how am I going to know and how often should I check in to see what things are available?” 

Health Educator Turned MPN Patient Speaks to Importance of Specialized Care

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.  

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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. 

My MPN Journey, Getting the Best Care After ET and MF Diagnoses

My MPN Journey, Getting the Best Care After ET and MF Diagnoses from Patient Empowerment Network on Vimeo.

Myelofibrosis and essential thrombocythemia (ET) patient Julia had experience as a health educator and hospital administrator before receiving her MPN diagnosis. Watch as she shares how she later connected the dots from her symptoms and blood work, lessons learned about myelofibrosis patient journeys, and her advice for living well with MPNs.

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My name is Julia, I was diagnosed with essential Thrombocythemia in 2007, and then with myelofibrosis a year later, after a routine blood work. The diagnosis came out of nowhere. I was healthy and active prior to my diagnosis and raising five children with my husband. I’ll never forget the day I received a voicemail from my primary care doctor’s office, I really couldn’t believe what I was hearing. I didn’t have time for this illness in my life. I had a bone marrow biopsy that showed I was positive for JAK2 and had a 5q deletion genetic mutation. I started on daily aspirin, and it was a hard pill to swallow for many reasons.

As a certified health educator and former hospital administrator, I understood the importance of treating a rare disease, but I had a difficult time with the idea of taking medicine daily, and I felt like I didn’t have any symptoms. I reviewed my old lab print-outs that showed elevated platelets 15 years before, that slowly increased over time. I recall having severe migraines that would put me out of commission for the day, and tenacious fatigue in the years before, I didn’t connect the dots with the symptoms, and neither did my oncologist. By 2007, my platelets and white blood cells were very high.

I decided to find an expert with extensive experience with ET and MF to get top-notch monitoring and treatment. I connected with a specialist for many years and hope to keep living with my disease for many years ahead. I’ve had several hospitalizations and ER visits over the years, but keep on going. MF has absolutely changed the path of my life and how I live it, but I still do most of what I want to do while I’ve been lucky in maintaining stable myelofibrosis with no true signs of disease progression or serious myelofibrosis complications, it’s important to understand the path for other myelofibrosis patients might be quite different.

My advice for others MPN patients is:

  • Pay attention to how you feel and pace yourself
  • Keep track of your blood counts, so you can alert your care team
  • Find an MPN specialist for your care
  • Don’t forget to be present and spend time with your family.

These actions are key to staying on your path to empowerment

Tips for Traveling During COVID with a Blood Disorder

Tips for Traveling During COVID with a Blood Disorder from Patient Empowerment Network on Vimeo.

PEN MPN network managers Summer and Jeff take us on the road for their annual camping trip in the Julian forest in Southern California. What are some of the challenges of traveling with a blood disorder?

Both share tips on how to make the best of traveling during COVID.

“Planning is key when you are traveling during COVID.”

The Importance of Finding a Myeloproliferative Neoplasm (MPN) Specialist

The Importance of Finding a Myeloproliferative Neoplasm (MPN) Specialist from Patient Empowerment Network on Vimeo.

How can MPN patients find a specialist? Patient Empowerment Network MPN managers Summer and Jeff share how they met their myelofibrosis specialist, Dr. Tiffany Tanaka, who gave them confidence about their path to empowerment.

Listen as Summer and Jeff share specific valuable tips for connecting to the best resources.

Newly Diagnosed with an MPN? Start Here.

Newly Diagnosed with an MPN? Start Here. from Patient Empowerment Network on Vimeo.

If you’ve been diagnosed with an MPN, such as essential thrombocythemia (ET), polycythemia vera (PV) or myelofibrosis (MF), Dr. Ruben Mesa outlines key steps you should take, including a visit with an MPN specialist.

Dr. Ruben Mesa is an international expert in the research and care of patients with myeloproliferative neoplasms (MPNs). He serves as director of UT Health San Antonio MD Anderson Cancer Center in San Antonio, Texas. More about this expert here.

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Dr. Ruben Mesa:

Patients who have a Myeloproliferative Neoplasm should consider seeing an MPN specialist at least at some frequency. The myeloproliferative neoplasms are not common illnesses. They’re not exceedingly rare, but they’re not common. And there is many nuances in terms of how we best diagnose the disease; the discussion we have with you regarding what are the treatment plans and goals, and then putting that plan into effect.

So, frequently, there’s a value in seeing someone who focuses on MPNs to help to establish that plan, and then frequently, there is a home physician, hematologist, or medical oncologist that works together along with the specialist in terms of managing the patient.

When patients first come for their visits related to an MPN, they have many questions. You know, they’re not common diseases, and people typically don’t have much experience with them. They’ve not had a family member that’s afflicted or someone at work. So, frequently, it comes on out of the blue. People will frequently, sometimes, go online and get a lot of information, but sometimes too much information; information that may or many not be appropriate for them.

So, there are many questions that are valuable, and I always advise patients to write down their questions ahead of time because sometimes in the heat of the moment, having a conversation, particularly with a new physician or provider, those questions may not, necessarily, be top of mind for them. So, we can go through those questions clearly.

I think key questions, I wouldn’t limit it to one key question, but I’d say I would put them in categories. 1.) Truly understanding the diagnosis; what’s the actual diagnosis that that patient has. 2.) What does the physician think are the risks that patient has? With each of the diseases, there are different risk classifications, and that will also help to give patients a frame of reference if they read other information about their disease online from highly reputable sources, or other educational sort of materials.

To understand, what is the recommended treatment plan. The plan may or may not included medications and understand what those medications are intended to do, and what their side effects may be, or what to anticipate.

It may or may not include aspirin, it may or may not include phlebotomy, or it may or may not include other therapies. So, understanding that diagnosis, understanding the risk, and understanding, what is the recommendation in terms of treatment.