Tag Archive for: Levine Cancer Institute

Dr. Michael Grunwald: Why Is It Important for You to Empower Patients?

How can patients be empowered in their care? Expert Dr. Michael Grunwald from Levine Cancer Institute discusses different methods he uses in patient empowerment and efforts he makes to help ensure their best care.

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Transcript:

Dr. Michael Grunwald:

I can’t say we’re always successful, but at our program, we try to empower patients with information, information about disease, biology, and potential complications, risk stratification, and potential treatments. Of course, the information has to be tailored to the patient’s individual situation, which includes his or her medical problems, health literacy, and preferences. That said, I always do think education is key. In the case of myelofibrosis, symptoms are very important.

I think taking these symptoms seriously is critical in the care of MPN patients. We always try to help with symptoms. Sometimes we achieve excellent results in treating the symptoms. Sometimes we cannot get everything as perfect as we want it to be. And I think hearing patients and listening to them talk about their symptoms and understanding that the symptoms might be related to the myelofibrosis can be very helpful to the patient.

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

 
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.”

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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

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.”

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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

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.”

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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.


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

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.”

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See More From [ACT]IVATED Myelofibrosis

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Managing Myelofibrosis for Patients Living Far From Specialists

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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

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.”

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See More From [ACT]IVATED Myelofibrosis

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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

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 GuideDescargar Guía

See More From [ACT]IVATED Myelofibrosis

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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

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

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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?

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 GuideDescargar Guía

See More From [ACT]IVATED Myelofibrosis

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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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Can Bone Marrow Return to Normal After CLL Treatment?

Can Bone Marrow Return to Normal After CLL Treatment? from Patient Empowerment Network on Vimeo.

Is it possible for chronic lymphocytic leukemia (CLL) patients to achieve normal bone marrow after CLL treatment? Expert Dr. Ryan Jacobs explains MRD-undetectable status and the typical time period to deep CLL remission.

Dr. Ryan Jacobs is a hematologist/oncologist specializing in chronic lymphocytic leukemia from Levine Cancer Institute. Learn more about Dr. Jacobs.

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Transcript:

Lisa Hatfield:

This patient is asking, upon completion of venetoclax (Venclexta) and obinutuzumab (Gazyva) and achieving MRD-undetectable status, how long does it take your bone marrow to achieve improved hemoglobin, hematocrit platelets, white blood cells? And does it always return to normal? And I might add in there just any kind of treatment, does the bone marrow typically return to “normal”? And how long does that take?

Dr. Jacobs:

So the majority of patients treated in the first-line setting and actually in the relapse setting with a combination of venetoclax and obinutuzumab, will have their CLL go into such a deep remission that we cannot detect it in 1 out of 10,000 cancer cells. So that is called MRD-undetectable. Those patients are usually also in complete remission, which means if you look at the bone marrow, you’re not going to see any CLL there. So the majority of patients have their counts normalized while they’re still on the venetoclax. You take it for a year. The complete remission is usually achieved before therapy is completed. And what little, if any CLL is in the bone marrow is not causing a drop in the counts. Now, of course, patients can have the toxicity-reduced counts. And if that’s the case, if it’s a toxicity issue, then it should resolve when you stop treatment. So I would say, usually it does return to normal, if not all…when they’re on therapy, then after therapy. If it’s a relapsed patient that’s seen a lot of therapies though, the bone marrow might never return to normal. 

Lisa Hatfield:

How far out are we from curative therapies for CLL patients with the tougher prognostic indicators?

Dr. Jacobs:

So I think curative is an interesting question, and it can mean different things to different people. But we’ve already shown at the most recent American Society of Hematology meeting, when they looked at the average life expectancy of patients without CLL, since the time that ibrutinib (Imbruvica) got approved and then now CLL patients, the survival curves are overlapping. So as of now, it looks like with our newer treatments that a CLL patient should reasonably expect to live a normal life expectancy. Does that mean cure? Well, if by cure you mean, does the disease go away forever with one treatment? We still don’t think we have that therapy for most patients. But we’ll see as we get longer and longer follow-up with some of these newer agents is there are going to be a proportion of patients that never relapse, that ibrutinib is going to have the longest follow up because it was the first one. I was just looking at a poster at the European Hematology Association meeting where they’ve followed patients seven, eight years out and more than half have still not progressed that got ibrutinib as a first-line therapy. So it’s reasonable to think that maybe some will never progress.


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Should CLL Patients Worry About Enlarged Lymph Nodes?

Should CLL Patients Worry About Enlarged Lymph Nodes? from Patient Empowerment Network on Vimeo.

Should chronic lymphocytic leukemia (CLL) patients be concerned about enlarged lymph nodes? Expert Dr. Ryan Jacobs shares his perspective on when his patients start treatment due to lymph node enlargement and additional symptoms that become concerning. 

Dr. Ryan Jacobs is a hematologist/oncologist specializing in chronic lymphocytic leukemia from Levine Cancer Institute. Learn more about Dr. Jacobs.

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Transcript:

Lisa Hatfield:

So this patient is asking, “When you are in the watch-and-wait phase and are feeling lymph nodes getting bigger, when is it appropriate to contact your oncologist?”

Dr. Jacobs:

This is a question that comes out a lot with my CLL patients. It’s a very subjective thing. Lymph node pain, that’s what’s supposed to trigger needing treatment for CLL from a lymph node standpoint. Technically speaking, if there’s a lymph node bigger than 10 centimeters, we’re supposed to start treatment. That’s one of the criteria too. That’s one that I almost never see, because usually patients get uncomfortable with their lymph nodes or their disease progresses elsewhere significantly before a lymph node gets that big.

So discomfort or pain, and that’s up to the patient, and I tell them like, “You have to tell me if this is bad enough that you want to start treatment.” And I have patients that are very different in how they interpret that. And I’ve got some patients that have visibly enlarged neck nodes and have had it for a while, and they don’t feel like they’re bothered by them, even though they’re quite chunky.

And then I have patients that have had lymph nodes that aren’t that big that really bother them. And so we start treatments. It’s just a very subjective thing. The only part I would identify is, you don’t need to just call your oncologist if you’re just noticing a little bit of growth or a node here and there, that’s expected. If you’re on active surveillance, it is expected that over time most patients’ white count will go up. Not all, most patients’ lymph nodes will grow. Not all.

The reason I would call an oncologist to maybe schedule earlier follow-up is if there’s accelerated growth that’s persistent and maybe if it’s associated with new symptoms like feeling really badly, fevers, waking up drenched in sweat. These are all signs that maybe the lymphoma has transformed to a more aggressive type of lymphoma that’s called Richter’s transformation. So that’s when I would be concerned. But low level chronic growth that’s relatively asymptomatic, is not overly concerning. 

Lisa Hatfield:

Hey, as a blood cancer patient, the limited duration treatment sounds like a dream. So this patient is asking, is there a time-limited pill-only treatment regimen yet, or is one in the pipeline?

Dr. Jacobs:

If you live in Europe, ibrutinib (Imbruvica) and venetoclax (Venclexta) got approved. I did a lot of research on that study. The FDA didn’t look as favorably on the comparison arms of the trials that led to the approval in the EU. So we do not have FDA approval. It is on the NCCN guidelines, as an option in…or as another option, that you can consider. The research is ongoing into getting the venetoclax combination approved with the newer BTK inhibitors. I currently am putting a lot of patients on a trial that’s looking at acalabrutinib and venetoclax. So I do think we will have, for some patients, the option, that for some patients that want it, and that seem to fit the, what we ultimately decide is the best patient population for this combination, the option to give a combination of pills for a time-defined period.


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Reasons to Get Chronic Lymphocytic Leukemia Second Opinions

Reasons to Get Chronic Lymphocytic Leukemia Second Opinions from Patient Empowerment Network on Vimeo.

Why are chronic lymphocytic leukemia (CLL) second opinions a  good idea? Expert Dr. Ryan Jacobs shares his perspective on CLL second opinions and how they can help in patient care.

Dr. Ryan Jacobs is a hematologist/oncologist specializing in chronic lymphocytic leukemia from Levine Cancer Institute. Learn more about Dr. Jacobs.

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Should CLL Patients Worry About Enlarged Lymph Nodes?


Transcript:

Lisa Hatfield:

So say one of your patients, seeing you or seeing a hematologist, maybe a local hematologist who doesn’t see a high volume of CLL, and they ask if…what would, what do you think…or they ask of their doctor, what do you think of me getting a second opinion on my diagnosis? Because patients are scared for one thing and they want to make sure that they’re making the right decisions for themselves. How do you feel about patients seeking a second opinion?

Dr. Jacobs:

I always support it. Of course, with me, I am often the second or even higher number of opinions that has received. But I certainly, I’m not there at the biggest cancer center in the world. I trained there, but that’s not where I’m at now. So I’ve had patients that have gotten even a second or third opinion from me and then go off and get a fourth opinion at MD Anderson. So, in terms of what I want patients to understand with opinions is, one, if you get a lot of opinions, that can just make it kind of difficult. And, so I don’t know if I would really support a large number of different opinions.

I think certainly getting a second opinion is reasonable. But whenever you’re seeking another opinion, I think it really only makes sense if you’re going to a higher level of specification. So certainly it makes sense to go from a general oncologist, getting a second opinion from somebody like myself that sees a lymphoma as a specialty and does research in CLL. But if you’re already seeing a CLL specialist to then seek another one, I think it, yeah, maybe if you want to go to even a bigger cancer center or someone that has maybe published over more years, that’s fine.

But it certainly doesn’t make sense to go from one CLL specialist to somebody that is maybe even less focused in CLL. And sometimes you’d have to kind of be aware of just where you’re at. In general, the specialists are going to be at the larger cancer centers. You might find the name of a larger cancer center in a small cancer clinic. And it’s unlikely that just because the name of that well-known cancer center is on a small clinic site that you’re going to have access to a lot of specialists at that site, usually to support specialists. You’re having to be at a large, usually urban-located cancer center.


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Which Oncologists Are Chronic Lymphocytic Leukemia Experts?

Which Oncologists Are Chronic Lymphocytic Leukemia Experts? from Patient Empowerment Network on Vimeo.

How are oncologists designated as chronic lymphocytic leukemia (CLL) experts? Expert Dr. Ryan Jacobs explains the benefits of seeing a CLL specialist and questions to ask about their experience for your optimal care.

Dr. Ryan Jacobs is a hematologist/oncologist specializing in chronic lymphocytic leukemia from Levine Cancer Institute. Learn more about Dr. Jacobs.

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Transcript:

Lisa Hatfield:

So I really appreciate this question from a patient because I’m a big advocate for patients seeking out a specialist for whatever type of cancer they have, at least for the initial consult. So this patient is asking, what are the criteria used to designate certain oncologists or hematologists as CLL experts, and how much weight is given to the number of published research papers that are co-authored?

Dr. Jacobs:

So I think this question is stemming from the acknowledgment that if you can see an expert and you have that resource, it makes sense. And I always bring up to patients, if you’re going to get a hernia repair, there’s plenty of data that shows if you go to a doctor that just does hernia…go to a surgeon that just does hernia repairs versus a general surgeon that only a proportion of his practice is hernia repairs, that the negative outcomes and failures of the surgery are lower with a specialized surgeon, which makes sense. I think it’s an easy way to connect that. And there’s actually data that shows the same in CLL if you go to a doctor that focuses in CLL. And then there are, of course, different levels. But they’re going to be more likely more up to date with the recommendations, have used more of the drugs, know how to navigate the toxicities with more experience.

So it’s all about truly what labels an expert is experience. And there’s not an official club, or a test or a, you know, a voting in. It’s just essentially oncologists that are able to, with the volume of their practice, focus in CLL or hematologic or lymphoid malignancies. So it’s quite rare to be able to find somebody that only sees CLL. I don’t even only see CLL. I do see other lymphomas. And I have five other lymphoma doctors in my practice here, but even with that many lymphoma patients, I still can’t completely fill up my clinic with just CLL.

So it’s really about how focused the practice is. Patients should feel empowered to ask oncologists what kind of cancers they treat. And, of course, there are many oncologists that have to treat everything and we need those oncologists. But it should just be understood that that oncologist couldn’t justifiably call himself a CLL expert by their practice. I think, and it’s reasonable, if you ask your oncologist what they treat and they only treat blood cancers, I think it’s safer to believe them if they identify as…I don’t think anybody’s going to try to misrepresent themselves.

But if somebody tells you that they focus in lymphoid or hematologic malignancies, and focus and are an expert in CLL, I think it’s okay to trust that. But if they’re seeing…by and large, if these doctors are having to see a wide breadth of solid tumor cancers as well, I think it’s kind of difficult to say you’re an expert in one small malignancy out of all those. But, of course, there can always be exceptions.

The question on publications, you know, that’s a different…you could go to a doctor that all they do is publish and don’t see patients very much, and you may not get the best care for your CLL. So yes, I think publications can show that they’re involved in research. But at the end of the day, in terms of treating the patient, you want an oncologist that treats a lot of CLL.


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Why Is Early Stage Chronic Lymphocytic Leukemia Treatment Delayed?

Why Is Early Stage Chronic Lymphocytic Leukemia Treatment Delayed? from Patient Empowerment Network on Vimeo.

What’s the reasoning behind delaying chronic lymphocytic leukemia (CLL) treatment in early stages?  Expert Dr. Ryan Jacobs explains results of the CLL12 study and why active surveillance is an approved approach in early stage CLL.

Dr. Ryan Jacobs is a hematologist/oncologist specializing in chronic lymphocytic leukemia from Levine Cancer Institute. Learn more about Dr. Jacobs.

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Transcript:

Lisa Hatfield:

Why are CLL patients not getting treatment in early stages of disease?

Dr. Jacobs:

So interestingly enough, in the recently reported final analysis of the CLL12 study, which was trying to look at this particular question, do we, with our newer agents, gain anything from starting treatment earlier? Because, I’ll just remind the audience that there’s never been a study that shows giving an asymptomatic patient chemotherapy, ultimately improves survival. So we don’t do it. And with the important also caveat that I…there is a percentage of CLL patients that will never progress clinically. And I have patients in my clinic that have been on active surveillance for more than two decades.

So, with all that in mind, with our newer treatments, and, of course, ibrutinib (Imbruvica) was the first newer of these targeted agents, these small molecule inhibitors, there was this question, well, now that we have these newer treatments, can we start treatment early and does it make a difference? And so they took high-risk CLL patients and randomly assigned them in a blinded way to placebo or ibrutinib and followed them for years. And they just recently shut down the study because after many years there is still no difference in survival. And, of course, there are side effects with treatment and there’s financial toxicity for treatment too.

So with no survival benefit, we are, in any study in asymptomatic patients, we are not treating asymptomatic patients. And I have patients that experience hearing that in different ways. I would say three-quarters are really happy and love the fact that they can see me in six months to check in. But then there is the percentage that are kind of angry and think that we’re missing the boat here by just watching, so to speak. But the data supports active surveillance.


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Can CLL Remission Occur With Rheumatoid Arthritis Drug Treatments?

Can CLL Remission Occur With Rheumatoid Arthritis Drug Treatments? from Patient Empowerment Network on Vimeo.

Is it possible for chronic lymphocytic leukemia (CLL) remission to occur from rheumatoid arthritis treatments? Expert Dr. Ryan Jacobs explains what he’s observed in his CLL patients who also have RA and take RA treatments.

Dr. Ryan Jacobs is a hematologist/oncologist specializing in chronic lymphocytic leukemia from Levine Cancer Institute. Learn more about Dr. Jacobs.

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Transcript:

Lisa Hatfield:

Do any rheumatoid arthritis medications help prevent CLL from returning after treatment with FCR?

Dr. Jacobs:  

I do have a fair number of patients that have rheumatologic conditions and some with rheumatoid arthritis. There are some approvals there, and I in no way pretend to be an expert in rheumatoid conditions. But I do know that there happens to be some agents that are monoclonal antibodies directed against CD20 used to treat some rheumatoid conditions. So I do have some patients that are on drugs like rituximab (Rituxan) to suppress their rheumatoid condition and help prevent recurrences.

And then kind of two birds, one stone also are keeping their CLL in a clinically asymptomatic remission, I’m sure I would say, or stable disease. And it comes with the known risk for long-term antibodies, that there are some increased infections there that was particularly concerned during COVID, the worst parts of COVID. But yeah, so there are some potential treatments like that.


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