Tag Archive for: [ACT]IVATED Myelofibrosis

Staying [ACT]IVATED: My Journey with Myelofibrosis and the Power of Proactive Care

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As an avid climber who made healthy choices, Jason never envisioned he would be diagnosed with myelofibrosis (MF). Watch as he shares his path to diagnosis, challenges with finding a good fit for an MF specialist, and advice for optimal care. 

See More From [ACT]IVATED MPN

Related Resources:

Engaging in Myelofibrosis Shared Decision-Making | How Patients Can Collaborate With Healthcare Providers in Treatment

Engaging in Myelofibrosis Shared Decision-Making | How Patients Can Collaborate With Healthcare Providers in Treatment

 Overcoming Barriers: Ensuring Equitable Access to Myelofibrosis Care and Clinical Trials

Overcoming Barriers: Ensuring Equitable Access to Myelofibrosis Care and Clinical Trials

 

 Novel Therapies and Clinical Trials for Myelofibrosis | Updates and Innovations

Novel Therapies and Clinical Trials for Myelofibrosis | Updates and Innovations

Transcript:

Being informed and proactive is crucial in managing myelofibrosis, a relatively unknown blood cancer. My name is Jason, and I was diagnosed with myelofibrosis at age 46. Being an avid climber and overall a healthy person, the news came as a huge shock. Now, with my experience, I want to share my story to help others who might be experiencing unusual symptoms, just as I did. My desire is to raise awareness and to stress the importance of early detection, ultimately aiming to improve outcomes for all those affected by myelofibrosis.

Even though I didn’t realize it at the time, my myelofibrosis symptoms began with fatigue and abdominal pain. I dismissed the symptoms and didn’t see my doctor until I noticed that my skin had become strangely itchy. My doctor ran a full blood panel and referred me to an academic cancer center. I was fortunate that I lived in the same city, but it made me think about what would have happened if I lived in a rural area. I received further testing followed by my diagnosis of myelofibrosis.

I was referred to a doctor who specializes in treating myeloproliferative neoplasms (MPNs). I met with the doctor but wasn’t sure that she was going to be the best fit for me. I’m a naturally curious person, and she didn’t seem open to answering a lot of my questions. After connecting with some other myelofibrosis patients in an online support group, I decided to meet with another specialist to see if I could find a better match for my care. I was fortunate to find a good match with the next MPN specialist. I’ve been under his care since, which started with active surveillance followed by an autologous stem cell transplant. My transplant was incredibly challenging, but my myelofibrosis support group was always there for me with words of support and taking action to support both my wife and me during my treatment journey.

Following my experience with myelofibrosis, I’ve become dedicated to educating others about its unique symptoms to raise awareness of this type of blood cancer. Like me, you can empower yourself by connecting with patient advocates and support groups that can assist you in navigating your healthcare journey.

Stay [ACT]IVATED in your myelofibrosis care with these tips:

  • Ask your care team questions to learn about the status of your treatment options, and what to expect during and after treatment.
  • Join a patient support group to offer and to receive emotional support. This was a saving grace for me and my family.

These actions for me were key to staying [ACT]IVATED in my myelofibrosis care.

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Overcoming Barriers: Ensuring Equitable Access to Myelofibrosis Care and Clinical Trials

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How can barriers to optional myelofibrosis care be overcome? Expert Dr. Abdulraheem Yacoub discusses common barriers that patients encounter, support and financial solutions to overcome barriers, and proactive patient advice. 

[ACT]IVATION TIP

“…seek the best care at any time and in any place, and doctors and healthcare systems will support you. You have to ask for help, and if you ask for help, more often you’ll get more than if you don’t ask for help, and you have to advocate for yourself to get the best care that you can access.”

Download Guide | Descargar Guía

See More From [ACT]IVATED Myelofibrosis

Related Resources:

Bridging the Gap | Enhancing Access to Specialized Myelofibrosis Care for Rural Patients

Bridging the Gap | Enhancing Access to Specialized Myelofibrosis Care for Rural Patients

 How Can Rural Physicians Improve Myelofibrosis Identification and Referrals?

How Can Rural Physicians Improve Myelofibrosis Identification and Referrals?

 Managing Myelofibrosis for Patients Living Far From Specialists

Managing Myelofibrosis for Patients Living Far From Specialists

Transcript:

Lisa Hatfield:

Dr. Yacoub, in the context of myelofibrosis, what are the key barriers to accessing optimal care treatments, including access to trials, particularly for patients in historically marginalized groups?

Dr. Abdulraheem Yacoub:

There are many barriers actually that I can see and I witness every day. One is the actual initial presentation. So a lot of patients have had objective abnormalities and symptoms and exam and laboratory results, and it took them an extended period of time to even reach a hematologist oncologist. And then even after they do that, the next barrier is the precision in making a diagnosis. Many patients make it to the doctor, but the diagnosis has not been refined or readdressed correctly. The diagnostic workup was not up to bar, and patients are not classified or diagnosed correctly. And then once the diagnosis is made correctly, the access to therapeutics is also a challenge.

So some of our therapeutics that are cutting-edge are actually very pricey. They require a lot of support and financial aid and financial assistance and involvement in the complex healthcare dynamics, including specialty pharmacy and pharmacists and social workers. And the more resources patients have at hand, the more resources their physician has at hand, the better access they will have to these drugs. So that’s another barrier is that this is not available to all patients equally and universally. And then beyond the standard approved therapeutics, clinical trials are also provided in centers of high volume in MPNs, and those are not distributed equally throughout the country. So there are regions in the country where patients have to drive many hours to get to the next MPN center of excellence.

And because MPNs are rare diseases, trials are not going to be open at large in all centers. So that’s another level of hardship and barrier to care for these patients. However, this should not really encourage a culture of lack of interest or complacency by doctors or by patients to accept status quo. I think my [ACT]IVATION tip for patients is that you should seek the best care at any time and in any place, and doctors and healthcare systems will support you. You have to ask for help, and if you ask for help, more often you’ll get more than if you don’t ask for help, and you have to advocate for yourself to get the best care that you can access.

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How Can Rural Physicians Improve Myelofibrosis Identification and Referrals?

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How can myelofibrosis be better identified and referred by PCPs? Expert Dr. Abdulraheem Yacoub discusses strategies for rural myelofibrosis care, partnerships between hematology centers and community oncologists, and patient advice for optimal care. 

[ACT]IVATION TIP

“…to not ignore subtle clues in health. So for patients who have lived a healthy life, the new onset of symptoms or the new onset of laboratory abnormality that is not explained should trigger additional steps and should not be ignored. All health problems can be best managed early on and then delaying access to care, delaying workup is not in anybody’s best interest.”

Download Guide | Descargar Guía

See More From [ACT]IVATED Myelofibrosis

Related Resources:

Bridging the Gap | Enhancing Access to Specialized Myelofibrosis Care for Rural Patients

Bridging the Gap | Enhancing Access to Specialized Myelofibrosis Care for Rural Patients

 Overcoming Barriers: Ensuring Equitable Access to Myelofibrosis Care and Clinical Trials

Overcoming Barriers: Ensuring Equitable Access to Myelofibrosis Care and Clinical Trials

 Managing Myelofibrosis for Patients Living Far From Specialists

Managing Myelofibrosis for Patients Living Far From Specialists

Transcript:

Lisa Hatfield:

Given how rare myelofibrosis is, how can primary care physicians in rural areas be better equipped to recognize and refer patients with suspected myelofibrosis?

Dr. Abdulraheem Yacoub:

Myelofibrosis is a rare malignancy that belongs to the family of myeloproliferative neoplasms. These cancers present with abnormal blood counts and increased constitutional symptoms. Many of those symptoms are not specific to myelofibrosis, and many of the laboratory abnormality is also not specific for myelofibrosis. So for a primary care physician, it might be a challenge to actually make that diagnosis or recognize the unique presentations of myelofibrosis. I think what primary care physicians should be very savvy about is to be aware of abnormal labs or abnormal symptoms and to try to refer the patients for a hematologist for initial diagnostic workup.

Further classification or the complexity of making the classification in the diagnosed myelofibrosis is probably above what a primary most primary care physicians are able to do because that would require molecular testing and a bone marrow examination and maybe imaging studies. And for that these will require the expertise of a hematologist oncologist. And I think the role of the primary care physician is to get the patient with the right trigger or the right abnormality to the specialist. And that will be a successful achievement from the primary care physician. And then what happens after that would probably require more involvement of the hematology oncology team and additional workup and referral to a tertiary center afterwards.

Lisa Hatfield:

I do have one follow-up question to that also. I have a type of blood cancer, not an MPN, but if I lived in a rural area, I would want to know, okay, my primary care physician referred me on, I’ve seen a hematologist, but I have a local oncologist, a general oncologist in my rural area. Would the specialist require me to go back and forth constantly to be seen in a different facility or is it possible that I could be seen by my general oncologist?

Dr. Abdulraheem Yacoub:

So there are many forms of partnership between centers that provide tertiary care along with the community oncologists and hematologists. And there are so many forms of how this can be conducted. And the main mission for us doctors is to provide the best care for the patients and also to provide good communication with their care team locally. And that really is a duty for every individual and all the parties involved in patient care.

So we would love to provide the best care for patients, but also through involving their local providers. This could be a one-time opinion with a tertiary center with a management plan that can be passed on to their local doctor. It could be a collaborative long-term relationship where patients have to see the tertiary center once a year and then their plan is updated every year with specific instructions and guidance to their local doctors. Or it could require more involved care with the tertiary center, especially if there’s a clinical trial that is needed or research options that are not available locally or therapeutics that are of high risk that cannot be delivered locally. Unfortunately, in some occasions, patients will have to drive or commute to the tertiary center on a regular basis.

Lisa Hatfield:

So there are many forms of such collaboration that happen, depends on the options, the treatments, and the needs.

Dr. Abdulraheem Yacoub:

My [ACT]IVATION tip is to not ignore subtle clues in health. So for patients who have lived a healthy life, the new onset of symptoms or the new onset of laboratory abnormality that is not explained should trigger additional steps and should not be ignored. All health problems can be best managed early on and then delaying access to care, delaying workup is not in anybody’s best interest.

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Bridging the Gap | Enhancing Access to Specialized Myelofibrosis Care for Rural Patients

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How can specialized myelofibrosis care be enhanced for rural patients? Expert Dr. Abdulraheem Yacoub from the University of Kansas Medical Center discusses solutions to bridge gaps in myelofibrosis care and patient advice for improving self-education and self-awareness.

[ACT]IVATION TIP

“…seek knowledge through the online reliable platforms of education, try to enrich their experience and their awareness of their disease and their surroundings, and also increase their awareness of specialties and expertise in the region where occasionally they might have to travel or seek attention from an MPN center of excellence in order to seek the care that they deserve and they need.”

Download Guide | Descargar Guía

See More From [ACT]IVATED Myelofibrosis

Related Resources:

How Can Rural Physicians Improve Myelofibrosis Identification and Referrals?

How Can Rural Physicians Improve Myelofibrosis Identification and Referrals?

 Overcoming Barriers: Ensuring Equitable Access to Myelofibrosis Care and Clinical Trials

Overcoming Barriers: Ensuring Equitable Access to Myelofibrosis Care and Clinical Trials

 Managing Myelofibrosis for Patients Living Far From Specialists

Managing Myelofibrosis for Patients Living Far From Specialists

Transcript:

Lisa Hatfield:

Dr. Yacoub, many patients live far from hospitals or clinics with hematology specialists leading to difficulties in accessing specialized care. What are the main barriers in addition to just the distance to accessing specialized care for myelofibrosis patients in rural areas?

Dr. Abdulraheem Yacoub:

Thank you very much, Lisa, for this. And access to healthcare is really a global concern in rural towns. And access to physicians in many subspecialties can be a challenge. It becomes an even more of a challenge in patients with rare diseases and rare cancers. So, MPN being a uniquely uncommon disease, it’s a disease that impacts younger, productive individuals who also have to have, maintain their work’s and family duties. It does compete with other priorities. So this compounds the access challenge for patients. Adding to that, is that even in patients with access to healthcare centers that are more sub-specialized, there are fewer MPN centers of excellence that can provide the service that patients deserve.

So this really compounds the challenge for patients with MPN. And this hopefully can improve with further improving access virtually to those patients or to use resources or platforms for self-education and self-advocacy that can connect patients to the experts that they require. So my [ACT]IVATION tip for patients is to seek knowledge through the online reliable platforms of education, try to enrich their experience and their awareness of their disease and their surroundings, and also increase their awareness of specialties and expertise in the region where occasionally they might have to travel or seek attention from an MPN center of excellence in order to seek the care that they deserve and they need.

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Engaging in Myelofibrosis Shared Decision-Making | How Patients Can Collaborate With Healthcare Providers in Treatment

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How can myelofibrosis patients engage in shared decision-making? Expert Dr. Michael Grunwald from Levine Cancer Institute discusses ways for patients to collaborate with healthcare providers to determine the optimal treatment approach for their care.
 

[ACT]IVATION TIP

“…patients can spend a few minutes preparing for appointments and find it very helpful. And I encourage patients to write down or type down questions and bring them with them, bring them with the patients to their medical appointments.”

Download Guide | Descargar Guía

See More From [ACT]IVATED Myelofibrosis

Related Resources:

Harnessing Community Resources to Support Rural Myelofibrosis Patients

Harnessing Community Resources to Support Rural Myelofibrosis Patients

 Leveraging Telemedicine to Manage Myelofibrosis in Rural Areas | Overcoming Distance and Accessibility Challenges

Leveraging Telemedicine to Manage Myelofibrosis in Rural Areas | Overcoming Distance and Accessibility Challenges

 Managing Myelofibrosis for Patients Living Far From Specialists

Managing Myelofibrosis for Patients Living Far From Specialists

Transcript:

Lisa Hatfield:

Dr. Grunwald, how can patients engage in shared decision-making with their healthcare providers to determine the most appropriate treatment approach for their myelofibrosis?

Dr. Michael Grunwald:

I love it when patients come to me with a list of questions where they’ve thought about their disease since the last visit. And they have a number of ideas, and usually the ideas and thoughts that they have are very good. Sometimes they’re a little bit out there because they spoke to somebody who had a, who had a funny idea, or they talked to somebody whose disease was different from theirs, or they found something online, that was funny and it’s all okay.

So I like answering the hard questions, the easy ones, the ones that I think are out there and not pertinent to the patient’s disease. But I love it when patients have empowered themselves by learning and by gathering information. And they bring the list of questions, whether it’s on their phone or iPad, or whether it’s just written down on a sheet of paper and we go through them together. So I think that that’s really a way that patients can empower themselves. My [ACT]IVATION tip for this question is, patients can spend a few minutes preparing for appointments and find it very helpful. And I encourage patients to write down or type down questions and bring them with them, bring them with the patients to their medical appointments.

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Managing Myelofibrosis for Patients Living Far From Specialists

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Myelofibrosis expert Dr. Michael Grunwald from Levine Cancer Institute discusses strategies for patients living far away from specialists, how often blood checks should be performed, and proactive patient advice.

[ACT]IVATION TIP

“…partnership between a specialist and local hematologist-oncologist and/or primary care physician can be beneficial for patients.”

Download Guide | Descargar Guía

See More From [ACT]IVATED Myelofibrosis

Related Resources:

Harnessing Community Resources to Support Rural Myelofibrosis Patients

Harnessing Community Resources to Support Rural Myelofibrosis Patients

 Leveraging Telemedicine to Manage Myelofibrosis in Rural Areas | Overcoming Distance and Accessibility Challenges

Leveraging Telemedicine to Manage Myelofibrosis in Rural Areas | Overcoming Distance and Accessibility Challenges

 Engaging in Myelofibrosis Shared Decision-Making | How Patients Can Collaborate With Healthcare Providers in Treatment

Engaging in Myelofibrosis Shared Decision-Making | How Patients Can Collaborate With Healthcare Providers in Treatment

Transcript:

Lisa Hatfield:

Dr. Grunwald, what strategies do you recommend for managing myelofibrosis patients who might live 200 or 300 miles away from the nearest specialist? And how often, if you are helping a patient who has a local oncologist and you’re seeing them as a specialist, how often do you want to see those patients?

Dr. Michael Grunwald:

So I agree that the partnership is very important. So I enjoy seeing patients who live far away and I enjoy partnering with their local hematologists-oncologists and sometimes their primary care physicians. So I think that, you basically gave it, it’s great advice for patients in rural areas to seek out these partnerships. But it’s hard for patients to come here frequently. Let’s say a patient with myelofibrosis might need blood checks monthly. It’s a long distance to drive 200, 300 miles. I’m not even sure if it’s a drive or a flight or a train trip or bus trip. It can be very challenging. And not everybody has a car. Not everybody has somebody to drive them if they don’t drive. And really a lot of challenges, gas money, so forth. So depending on how sick a patient is, we will tailor the visits.

If I think that a patient is doing reasonably well, then I might see the patient once or twice a year. Sometimes telehealth, sometimes in person, if I’m very worried about someone, I might encourage them to come a little bit more often than that so I can get some hands-on monitoring and do a physical exam in addition to just speaking with the patient. So, I would say it varies, but there are many myelofibrosis patients who check in with me, either in-person or telehealth, if they live in North Carolina as little as once a year, whereas they might be getting their blood checked and seeing their local physician as frequently as every month. 

Lisa Hatfield:

If you do have a patient that you’re seeing once or twice a year and they’re interested in a clinical trial that’s at your center, would that require that patient to relocate to your center for a period of time to be part of that clinical trial?

Dr. Michael Grunwald:

Unfortunately, most of the time, yes. Because trials, especially during the first few weeks and even sometimes the first few months of care on a clinical trial, the trials require very close observation and frequent visits. And depending on the phase of the study, the purposes can be a little bit different. But a lot of that frequent monitoring has the patient’s best interest in mind, meaning the safety of the patient. So patients are being watched for side effects while they’re on an experimental drug.

And we’re making sure that we’re not causing more harm than good with the experimental treatment, which I think is extremely important because our first goal as physicians is to do no harm to anybody. We want to help, but we certainly don’t want to hurt anybody, but we’re not always able to help. But I want to change ones a little bit differently, but our first goal as physicians is to do no harm.

We certainly want to help everyone, most patients we can’t help, which is fortunate. It’s great to be a physician in 2024 because we can help most patients. There are some issues that we don’t help as much with as we would like to, and we just want to make sure we’re doing no harm. That at worst, at worst we’re neutral to the patient. And keeping safety in mind with clinical trials is paramount in doing clinical trials. I don’t think we can do it without keeping safety first and foremost.

So yes, with some rare exceptions, patients do have to relocate to a center like ours or another larger university settings center in order to receive clinical trial care. There are some types of observational studies, meaning studies where patients are receiving a standard of care treatment and they are being observed for certain outcomes where a patient might be able to participate even if he or she is far from a major center. Those studies usually are not using investigational treatments, but they might help contribute to learning and to science, that’s very important in learning about myelofibrosis.

My [ACT]IVATION tip for this question is partnership between a specialist and local hematologist-oncologist and/or primary care physician can be beneficial for patients.

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Harnessing Community Resources to Support Rural Myelofibrosis Patients

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How can community resources be utilized to support rural myelofibrosis patients? Expert Dr. Michael Grunwald from Levine Cancer Institute shares his perspective and how conversations with providers can be enriched.

[ACT]IVATION TIP

“…while one cannot trust everything one learns online, oftentimes online communities can point patients toward helpful questions that enrich the conversations they have with their providers.”

Download Guide | Descargar Guía

See More From [ACT]IVATED Myelofibrosis

Related Resources:

Managing Myelofibrosis for Patients Living Far From Specialists

Managing Myelofibrosis for Patients Living Far From Specialists

 Leveraging Telemedicine to Manage Myelofibrosis in Rural Areas | Overcoming Distance and Accessibility Challenges

Leveraging Telemedicine to Manage Myelofibrosis in Rural Areas | Overcoming Distance and Accessibility Challenges

 Engaging in Myelofibrosis Shared Decision-Making | How Patients Can Collaborate With Healthcare Providers in Treatment

Engaging in Myelofibrosis Shared Decision-Making | How Patients Can Collaborate With Healthcare Providers in Treatment

Transcript:

Lisa Hatfield:

Dr. Grunwald, what role can community resources play in supporting rural myelofibrosis patients, and how can they be effectively utilized?

Dr. Michael Grunwald:

Thanks for that question, Lisa. I’ve found that the MPN community is very strong. Patients meet in-person at patient advocacy events sometimes. There are powerful online forums for patients to communicate and teach one another and learn from one another.

Frequently, patients have helpful advice for other patients, and it can be helpful to share experiences. While patients can’t always trust everything that they hear from word of mouth or online, I find that a lot of times patients bring to me very interesting questions about their disease and observations about their disease that are informed by connecting with other patients.

And I think that those connections are available to most patients nowadays. Most of our patients, regardless of where they live and regardless of their access to healthcare, most of them have some sort of device, whether it’s a smartphone or a tablet or a computer where they can interact with others if they are not able to find an in-person forum to meet other patients.

My [ACT]IVATION tip for this question is that while one cannot trust everything one learns online, oftentimes online communities can point patients toward helpful questions that enrich the conversations they have with their providers.

Share Your Feedback

Leveraging Telemedicine to Manage Myelofibrosis in Rural Areas | Overcoming Distance and Accessibility Challenges

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How can telemedicine be leveraged to aid myelofibrosis patients in rural areas? Expert Dr. Michael Grunwald from Levine Cancer Institute discusses methods used to help manage care of rural myelofibrosis patients, frequency and duration of virtual visits, and patient advice. 

[ACT]IVATION TIP

“…while there can be regulatory limitations on certain uses of telemedicine, patients should take advantage of telemedicine when it’s possible.”

Download Guide | Descargar Guía

See More From [ACT]IVATED Myelofibrosis

Related Resources:

Managing Myelofibrosis for Patients Living Far From Specialists

Managing Myelofibrosis for Patients Living Far From Specialists

 Harnessing Community Resources to Support Rural Myelofibrosis Patients

Harnessing Community Resources to Support Rural Myelofibrosis Patients

 Engaging in Myelofibrosis Shared Decision-Making | How Patients Can Collaborate With Healthcare Providers in Treatment

Engaging in Myelofibrosis Shared Decision-Making | How Patients Can Collaborate With Healthcare Providers in Treatment

Transcript:

Lisa Hatfield:

Dr. Grunwald, how can telemedicine be effectively utilized to manage and monitor myelofibrosis patients in rural areas considering their challenges that these patients have with distance and accessibility?

Dr. Michael Grunwald:

I found that it can be incredibly helpful. So I have some patients who are within our healthcare system who have myelofibrosis and they might get their labs checked at a center that’s 1, 2, 3 hours away from here. And I can see the labs in our electronic medical record system because those offices happen to be connected with our medical record. And those patients can see a doctor at the center over there.

And I might know the patient from having seen the patient once a year or twice a year, but they could be seen more frequently at the center, closer to their home. And I can interact with the physician there through the medical record, through the electronic medical record, and also view all test results. And in fact, I can order tests. There are also many patients who are outside of our healthcare system and live the same distances away.

They’re taking care of providers who are not part of our system. I might not always be able to see those patients’ medical records, easily an hour version of the electronic medical record, but I can call those doctors, I can receive faxed information and then we can scan it into the patient’s chart here. And I can still take care of those patients remotely and provide some check-ins from time to time that we performed via video visits.

Here in North Carolina, and it might be different from state to state, but here in North Carolina, we have a restriction where insurance will only sanction telehealth visits if those visits are within state boundaries. So it’s very hard for us, in my understanding, and things are changing over time, but in my current understanding, it’s very hard for me to take care of a patient who’s in a different state because of the rules about insurance and payment and medical liability and so forth.

However, for patients who live in North Carolina, which is a large state, it’s easy for me to provide telehealth visits as necessary and they’re very valuable. I think that for patients who live a little bit further away, I do have them come a little bit more often because I cannot do the telehealth visits for say, South Carolina, Tennessee, Virginia.

But I might have patients have labs drawn locally on occasion and then review the labs and then call the patient, or one of my staff will call the patient to review the lab results that I’ve looked at, and we can provide some degree of advice remotely, even though it can be short of a video visit, which would be preferred. My [ACT]IVATION tip for this question is, while there can be regulatory limitations on certain uses of telemedicine, patients should take advantage of telemedicine when it’s possible.

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Helping Rural Doctors Recognize Myelofibrosis | How Patients and Providers Can Work Together

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How can myelofibrosis patients and providers collaborate in helping rural doctors? Expert Dr. Michael Grunwald from Levine Cancer Institute discusses common myelofibrosis symptoms and proactive patient advice for educating themselves and their providers about symptoms and care.

[ACT]IVATION TIP

“…patients with newly diagnosed myelofibrosis and longstanding myelofibrosis can help educate primary care physicians about the disease. Often, primary care physicians want to be able to partner with specialists in the care of complex conditions.”

Download Guide | Descargar Guía

See More From [ACT]IVATED Myelofibrosis

Related Resources:

How Does Risk Stratification Shape Myelofibrosis Treatment

How Does Risk Stratification Shape Myelofibrosis Treatment?

 Novel Therapies and Clinical Trials for Myelofibrosis | Updates and Innovations

Novel Therapies and Clinical Trials for Myelofibrosis | Updates and Innovations

 Barriers to Accessing Specialized Myelofibrosis Care in Rural Areas | Challenges and Solutions

Barriers to Accessing Specialized Myelofibrosis Care in Rural Areas | Challenges and Solutions

Transcript:

Lisa Hatfield:

Dr. Grunwald, given how rare this disease is, how can primary care physicians in rural areas be better equipped to recognize and refer patients with suspected myelofibrosis? And what topics, in terms of questions, should patients be asking their primary care providers in rural areas?

Dr. Michael Grunwald:

I think the answer lies in education. It is difficult for primary care physicians to keep up with all organ systems, all diseases. I think it’s important for us as hematologists, for the hematology field, to let primary care providers know the signs of myelofibrosis and also the fact that treatment has become more nuanced and complex in recent years with multiple new therapies available. It also helps if patients educate themselves and educate their providers. So some of the signs, some of the initial signs of myelofibrosis can include splenomegaly, unexplained symptoms such as itching, night sweats, and/or bone pain, sometimes fatigue.

And if patients experience those symptoms, they can seek out primary care help to have their blood tested. Oftentimes, myelofibrosis patients will have abnormalities that are detectable on the peripheral blood with a CBC, a complete blood count with differential. Patients who know that they have myelofibrosis can help teach their primary care providers about their journey in MF care, thereby increasing knowledge and letting providers know how far myelofibrosis care has come. So I think hematologists and patients can work together to try to teach primary care providers about this disease.

My [ACT]IVATION tip for this question is patients with newly diagnosed myelofibrosis and long-standing myelofibrosis can help educate primary care physicians about the disease. Often, primary care physicians want to be able to partner with specialists in the care of complex conditions.

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Barriers to Accessing Specialized Myelofibrosis Care in Rural Areas | Challenges and Solutions

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What are common myelofibrosis care barriers in rural areas? Expert Dr. Michael Grunwald from Levine Cancer Institute discusses barriers that myelofibrosis patients in rural areas encounter and solutions for overcoming barriers for improved care.

[ACT]IVATION TIP

“…oftentimes, specialized MPN physicians and local physicians can partner to coordinate care. I think it is appropriate for patients to pursue this, and I have found that many patients and providers appreciate the partnership.”

Download Guide | Descargar Guía

See More From [ACT]IVATED Myelofibrosis

Related Resources:

How Does Risk Stratification Shape Myelofibrosis Treatment

How Does Risk Stratification Shape Myelofibrosis Treatment?

 Novel Therapies and Clinical Trials for Myelofibrosis | Updates and Innovations

Novel Therapies and Clinical Trials for Myelofibrosis | Updates and Innovations

 Helping Rural Doctors Recognize Myelofibrosis | How Patients and Providers Can Work Together

Helping Rural Doctors Recognize Myelofibrosis | How Patients and Providers Can Work Together

Transcript:

Lisa Hatfield:

Dr. Grunwald, what are the main barriers to accessing specialized care for myelofibrosis patients in rural areas?

Dr. Michael Grunwald:

I think a big barrier is that sometimes it can be hard to find providers who are familiar with the disease, whether it’s primary care providers or hematologist-oncologists. And there are many excellent hematologist-oncologists who practice in rural settings. Most of them in my experience, will be treating every type of cancer and every type of blood disease. So many of these physicians, they might be seeing a patient for colon cancer and then the next patient might be a breast cancer patient, next patient might be a lung cancer patient. Then there might be a patient with a benign blood disease, let’s call it iron deficiency anemia.

And then maybe there might be a patient who has a myeloproliferative neoplasm like myelofibrosis. And so there’s not the same degree of specialization in myeloproliferative neoplasms as you might see in some of the larger cities where the population can support the existence of such specialists. Of course, I’m not talking about every scenario. There might be some rural doctors with a lot of expertise and certainly there’s some large centers that happen to be in areas that are a little bit less populated. So I certainly don’t want my comment to be taken as a all-encompassing or as a definite rule.

But I think it’s a good rule of thumb that we’re going to see more general oncologist-hematologists in rural settings. And that creates a bit of a challenge because many times these oncologists are less familiar with this group of diseases, the myeloproliferative neoplasms and myelofibrosis in specific, which is a rare disease. And they might not know certain of the symptoms that can be associated with myelofibrosis. They might not be up to date on all of the latest scoring systems and risk stratification. They might not be up to date on all the most recent treatments.

Therefore, this creates a little bit of a barrier for the patients and families to overcome as they try to learn about their diseases. Oftentimes, physicians in rural settings will partner with physicians at large centers and try to collaborate in the care of patients. My [ACT]IVATION tip for this question is, oftentimes, specialized MPN physicians and local physicians can partner to coordinate care. I think it is appropriate for patients to pursue this, and I have found that many patients and providers appreciate the partnership.

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Novel Therapies and Clinical Trials for Myelofibrosis | Updates and Innovations

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What’s the latest in higher risk myelofibrosis novel therapies and clinical trials? Expert Dr. Michael Grunwald from Levine Cancer Institute discusses JAK inhibitors and other research updates along with proactive patient advice for clinical trials.

[ACT]IVATION TIP

“…it is okay and, in fact, encouraged for patients to ask about clinical trials, especially if patients have access to a clinical trial center where they might be able to be treated on a clinical trial.”

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See More From [ACT]IVATED Myelofibrosis

Related Resources:

How Does Risk Stratification Shape Myelofibrosis Treatment

How Does Risk Stratification Shape Myelofibrosis Treatment?

 Barriers to Accessing Specialized Myelofibrosis Care in Rural Areas | Challenges and Solutions

Barriers to Accessing Specialized Myelofibrosis Care in Rural Areas | Challenges and Solutions

 Helping Rural Doctors Recognize Myelofibrosis | How Patients and Providers Can Work Together

Helping Rural Doctors Recognize Myelofibrosis | How Patients and Providers Can Work Together

Transcript:

Lisa Hatfield:

Dr. Grunwald, can you discuss novel therapies and current clinical trials for lower risk and higher risk myelofibrosis?

Dr. Michael Grunwald:

We’re in an exciting time in myelofibrosis because we’ve already had some new therapies introduced into the clinic in recent years and there are a number of ongoing trials that are very exciting. Some of these trials look at agents in combination with JAK inhibitors or four currently approved JAK inhibitors for myelofibrosis, ruxolitinib (Jakafi) being the oldest one. And many of these trials that are ongoing will combine a novel agent.

So there’s pelabresib (CPI-0610), which is from a class of medicines called BET inhibitors, which has shown very good efficacy in reducing spleen size when it’s combined with ruxolitinib in the treatment of newly diagnosed patients with myelofibrosis. We also have navitoclax, which is an apoptosis inhibitor or a cell death inhibitor that’s been used in combination with ruxolitinib (Jakafi) and has had promising results presented in terms of spleen reduction. There’s selinexor (Xpovio), which is a drug approved for another blood disease, multiple myeloma, and that’s being combined in trials with ruxolitinib.

And then navtemadlin as well, which is from a group of drugs called MDM2 inhibitors. Then we have drugs being looked at as a single agent. So there’s an agent called imetelstat (Rytelo) that was recently approved for a cousin of myelofibrosis called myelodysplastic syndrome or MDS, and now it’s being evaluated in myelofibrosis.

We have ropeginterferon alfa-2b (Besremi), which is approved for another MPN polycythemia vera and it’s being looked at in myelofibrosis as well. Something really exciting to me is the CALR mutant inhibitors. So many patients with myelofibrosis will have CALR mutations. Probably around 30 percent of myelofibrosis patients have that mutation. And there are some strategies being developed to try to target that mutation and kill myelofibrosis cells by targeting it. There’s a naked antibody that’s in clinical trials. There is something called a bispecific antibody that is targeting the mutation, but also trying to bring immune cells or T cells close to the tumor cells so that there’s good tumor killing by the immune system.

And finally there’s a vaccine in development to try to target this mutation. There’s also a medicine called bomedemstat (MK-3543) that’s being tested in multiple myeloproliferative neoplasms and it’s been looked at as a single agent, and I believe it’s going to be looked at as a combination with a JAK inhibitor as well. Most of those therapies are targeting intermediate and high risk MF patients. That’s where a lot of the clinical trial action is. The ropeginterferon alfa-2b study is looking at lower risk patients. And then, there are some strategies to try to improve anemia in myelofibrosis, and those strategies can also include some patients toward the lower end of the risk spectrum.

For example, there’s a drug that’s been approved for myelodysplastic syndrome to help anemia since 2019, I think it’s been, 2019 or 2020. And that’s luspatercept (Reblozyl) it’s being tested for anemia in myelofibrosis. And I think that might be a drug that would be appropriate for some patients with lower risk disease who happen to have some anemia. My [ACT]IVATION tip for this question is that it is okay and, in fact, encouraged for patients to ask about clinical trials, especially if patients have access to a clinical trial center where they might be able to be treated on a clinical trial.

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How Does Risk Stratification Shape Myelofibrosis Treatment?

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What is involved in determining low risk versus high risk myelofibrosis? Expert Dr. Michael Grunwald from Levine Cancer Institute discusses IPSS, DIPSS, MYSEC-PM, and MIPSS70 scoring systems, key patient factors they weigh in determining risk, and why risk stratification is an essential part of myelofibrosis care. 

[ACT]IVATION TIP

“…risk stratification is important because it can impact treatment choices including whether to initiate treatment, whether to pursue transplantation, and sometimes the type of treatment as well. Also, lower risk patients can require treatment at times for symptoms and splenomegaly in myelofibrosis.”

Download Guide | Descargar Guía

See More From [ACT]IVATED Myelofibrosis

Related Resources:

Novel Therapies and Clinical Trials for Myelofibrosis | Updates and Innovations

Novel Therapies and Clinical Trials for Myelofibrosis | Updates and Innovations

 Barriers to Accessing Specialized Myelofibrosis Care in Rural Areas | Challenges and Solutions

Barriers to Accessing Specialized Myelofibrosis Care in Rural Areas | Challenges and Solutions

 Helping Rural Doctors Recognize Myelofibrosis | How Patients and Providers Can Work Together

Helping Rural Doctors Recognize Myelofibrosis | How Patients and Providers Can Work Together

Transcript:

Lisa Hatfield:

Dr. Grunwald, what is lower risk versus higher risk myelofibrosis?

Dr. Michael Grunwald:

Fortunately, we have various risk stratification systems available. We have the International Prognostic Scoring System or IPSS, and then later on, the Dynamic International Prognostic Scoring System or DIPSS scoring system was developed to risk stratify patients. And then the DIPSS Plus, there’s the MYSEC-PM scoring system, which is specifically for patients who have a history of essential thrombocythemia or ET, or polycythemia vera or PV, who then developed myelofibrosis.

And then finally, we have the Molecular Scoring Systems, the Molecular International Prognostic Scoring System, which is called the MIPSS70. And then the newest one of those is the MIPSS70 Plus version 2.0. So we have a lot of different risk stratification systems and they have many features in common.

These risk stratification systems look at patient’s age, their blood counts, sometimes whether patients are so anemic that they’re requiring blood transfusions, the percentage of blasts in the peripheral blood, the degree of fibrosis or scar tissue in the bone marrow, their cytogenetics. So whether patients are missing big chunks of genes in their bone marrow or whether chunks of genes are translocated from one chromosome to another chromosome.

And then finally, the Molecular Scoring Systems take into account individual genetic mutations. Based on these features of a patient’s disease, we can determine whether a patient is at high or low risk of progression and also high or low risk of mortality from myelofibrosis. And the scoring systems are all a little bit different, so it’s confusing, but there are certain features that are common among low risk patients. So more normal blood counts, lower percentages of blasts in the peripheral blood, less fibrosis in the bone marrow, and then more favorable mutations, which could be chromosomal abnormalities or individual genetic mutations. Higher risk patients tend to have more abnormal blood counts, higher blast percentages, more fibrosis in the marrow, and then unfavorable risk mutations.

And from this we get a sense of whether a patient’s disease is likely to progress to acute leukemia, and also whether a patient is at risk of death from myelofibrosis in the near future. This information can be very helpful because it can guide us in our recommendations for treatment or sometimes for no treatment for a patient.

Lisa Hatfield:

Ok, thank you. So if I were your patient and I was just recently diagnosed with myelofibrosis and I said I heard that I was staged or given the risk stratification from the DIPSS system, would you know what that means and how that might relate to other systems of staging or do I need to be aware myself that it means this, that it means I am lower risk or higher risk, will you tell me that if I was sitting in your office?

Dr. Michael Grunwald:

Yes. So I went through this with patients yesterday where we sat together and we looked at the scoring systems, and we looked at a few of the scoring systems, and we plugged in patients’ numbers into scoring system calculators that are available online. So I can plug in the white count, I can plug in the patient’s platelet count, their hemoglobin, their mutations, and figure out what their DIPSS score is, what their DIPSS Plus score is, what their MIPSS70 score is. And I like it when the information from the different scoring systems is fairly concordant.

For example, if a patient is low risk by all of the risk stratification systems, makes me very confident that a patient is low risk. And then if there’s more discordance where, let’s say, a patient has a molecular mutation that indicates high risk and heavily sways the MIPSS70 or MIPSS70 Plus version 2.0 toward the higher end of the risk spectrum, and we have another scoring system, one of the older ones that would indicate lower risk, that’s where the conversation is a little bit more difficult. And I tend to trust the newer molecular systems a little more, especially in patients who had no previous history of essential thrombocythemia (ET) or polycythemia vera (PV). And we do discuss that with the patients, both the clinical attributes and the genetic attributes of the disease.

My [ACT]IVATION tip for this question is, risk stratification is important because it can impact treatment choices including whether to initiate treatment, whether to pursue transplantation, and sometimes the type of treatment as well. Also, lower risk patients can require treatment at times for symptoms and splenomegaly in myelofibrosis.

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