Harnessing Community Resources to Support Rural Myelofibrosis Patients

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

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

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

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.

Share Your Feedback

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

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

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.

Share Your Feedback

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

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

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.

Share Your Feedback

Novel Therapies and Clinical Trials for Myelofibrosis | Updates and Innovations

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

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.”

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?

 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.

Share Your Feedback

How Does Risk Stratification Shape Myelofibrosis Treatment?

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

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.

Share Your Feedback

[ACT]IVATED Myelofibrosis Resource Guide en español

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

 Descargar Guía

Spanish_ACTIVATED Myelofibrosis Resource Guide_Yacoub + Grunwald

Download Guide | Descargar Guía

See More From [ACT]IVATED Myelofibrosis

Share Your Feedback

[ACT]IVATED Myelofibrosis Resource Guide

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

Download Guide

ACTIVATED Myelofibrosis Resource Guide_Yacoub + Grunwald

Download Guide | Descargar Guía

See More From [ACT]IVATED Myelofibrosis

Share Your Feedback

Becoming an Empowered and [ACT]IVATED MPN Patient

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

Patient Empowerment Network (PEN) is committed to efforts to educate and empower patients and care partners in the myeloproliferative neoplasm (MPN) community. MPN treatment options are ever-increasing with research advancements in treatments and testing, and it’s essential for patients and families to educate themselves with health literacy tools and resources on the latest information in MPN care. With this goal in mind, PEN kicked off the [ACT]IVATED MPN program, which aims to inform, empower, and engage patients to stay abreast of up-to-date information in myeloproliferative neoplasm care.

The [ACT]IVATED MPN program is aimed at newly diagnosed MPN patients, yet it can help patients at any stage of disease. [ACT]IVATED MPN helps patients and care partners stay updated on the latest options for their MPN, provides patient activation tools to help overcome care disparities and barriers to accessing care, and powerful tips for self-advocacy, coping, and living well with  a blood cancer.

MPN Expert

Myeloproliferative Neoplasm Disparities

Race or ethnicity may have an impact on some health conditions, including MPNs. Cancer patient Lisa Hatfield interviewed Dr. Idoroenyi Amanam, Assistant Professor in the Division of Hematology at City of Hope. He explained about MPN risks and outcomes that may be impacted by patient race or ethnicity. “…we know that if you have high blood pressure, you have a higher risk for these complications-associated MPNs. And we know that African American males have a higher risk for that, so I think those things are…that example is a clear indicator that really identifying these basic risk factors that are related to diet, exercise, your weight, and other behavioral, possibly behavior-related factors may put you at higher risk to have complications from MPNs.”

 

Dr. Amanam further shared research findings and what needs further study to draw conclusions. “We have looked at incidences of thrombotic events in patients who have MPNs, and we tried to see if there was a difference between racial groups, and we didn’t. We did see that if you’re younger, you do have a higher risk of thrombosis over time, but there was no difference for if you were white, Hispanic, or African American. What we did find though, in a small single center study is that if you are non-white, there’s a higher risk of death over time. And I think we still need a lot of work to get a better understanding as to why that’s the case.”

Dr. Amanam Background

Solutions for Improved Myeloproliferative Neoplasm Care

Clinical trials are key in moving MPN research forward to improved treatments and care. Dr. Amanam shared his perspective about other players besides patients who can help move the needle forward. “I think that going back to the idea that we want to practice the best science, we want to be able to publish the best data. The responsibility is on the clinicians, the scientists, the clinical trialists, the drug companies, the institutions to really be able to structure clinical trials that are relevant to our real world experience. And so how can we better encourage that? I think from a government perspective, potentially incentivizing drug companies and institutions and the other major players that really are involved in pushing this field forward to practice better science.”

Dr. Amanam expanded on how clinical trials can be diversified. “And once we’re clear that being able to have a diverse participant pool will give us the best results and therefore will lead to your drug being approved. I think we will have more participants from all groups.”

Some underrepresented patient communities may experience obstacles to MPN care. MPN Nurse Practitioner Natasha Johnson from Moffitt Cancer Center provided advice to help patients. “Patients themselves can research clinical trials by looking at clinicaltrials.gov and see what’s out there and contact the academic center that’s performing those trials. There’s free information online that provides recorded sessions from conferences or speakers or speaking done by the MPN experts that you can just look to and get to easily to help understand the disease, knowing the symptoms, and then guiding treatment.” Natasha Johnson continued with additional advice for optimal care. “.…to try to get into a large cancer center or academic center and see an MPN expert. Many times, this is just by self-referral. Charity is sometimes provided through these. Zoom visits can be done as consults or follow-up visits. So my encouragement would be search these out, find out who the experts are, and contact them directly and see if there is any possibility or a way that you can get in to see an MPN expert for a consult so you can get the best care possible.” 

Signs of MPN disease progression is something that patients and providers must be on the lookout for. Natasha Johnson shared her advice for patients to empower themselves against disease progression. “…monitor your blood cell counts, be your own advocate. Think about if they’re changing, could it be medication, or is it disease progression? Monitor your symptoms. Look at the total symptoms score or write down your symptoms and try to record where you’re at in intervals. Are things getting worse? If they are, don’t wait three months for your next appointment. Contact your healthcare provider and ask to be seen. Ask about getting a repeat bone marrow biopsy to establish where the current disease status is because that can open up doors possibly to more treatments.”

The future of MPN care has an additional approach to address. Dr. Amanam shared his perspective and how patients can help advocate for improved treatments. “I think in the next three to five years, we’re going to have drugs that are going to actually be able to treat the underlying disease before it gets to a point where you may need more aggressive therapy…And so it’s exciting where we’re going, and I think the questions that as a patient that I would ask are, because of the fact that we only have few FDA-approved therapies, are there any clinical trials that are able to target the underlying disease as opposed to just treating the symptoms? I think that’s very important for the patients to ask, especially in this space now.”

Rates for stem cell transplant approvals must improve for lower income groups and for African American and Hispanic groups to provide better health outcomes for blood cancers like MPNs. Dr.  Amanam explained what’s involved with transplants and how others can help as donors. “You can donate your bone marrow, or you can donate your stem cells that are not inside of your bone marrow. And typically as a donor, your experience of actually donating is about a day. And the recovery time after you donate your bone marrow or stem cells, it’s typically within about one to three days.  So the benefit of donating your stem cells or bone marrow outweighs the inconvenience of a day or a couple of days of your schedule being altered. So I think that’s really important to understand. And I think if we can get more people to be aware of this, I think we can definitely get more donors.”

[ACT]IVATED Program Logo

[ACT]IVATED MPN Program Resources

The [ACT]IVATED MPN program series takes a three-part approach to inform, empower, and engage both the overall MPN community and patient groups who experience health disparities. The series includes the following resources:

Though there are myeloproliferative neoplasm disparities, patients and care partners can take action to empower themselves to help ensure optimal care. We hope you can take advantage of these valuable resources to aid in your MPN care for yourself or for your loved one.

La historia de Yolanda: mi camino hacia un diagnóstico de neoplasia mieloproliferativa

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

La historia de Yolanda: mi camino hacia un diagnóstico de neoplasia mieloproliferativa from Patient Empowerment Network on Vimeo.

Yolanda, paciente latina con trombocitemia esencial (TE), tenía muchos síntomas antes de recibir su diagnóstico final. Observe cómo comparte los síntomas que experimentó, su largo camino hasta el diagnóstico y las lecciones aprendidas sobre el empoderamiento del paciente.

See More From [ACT]IVATED MPN

Related Resources:

Are MPN Risks and Outcomes Impacted by Race or Ethnicity

Are MPN Risks and Outcomes Impacted by Race or Ethnicity?

 Yolanda’s Story: My Path to a Myeloproliferative Neoplasm Diagnosis

Yolanda’s Story: My Path to a Myeloproliferative Neoplasm Diagnosis

 Are There Disparities in Stem Cell Transplant Outcomes

Are There Disparities in Stem Cell Transplant Outcomes?

Transcript:

Mi nombre es Yolanda y a mediados de los 40 me diagnosticaron trombocitemia esencial (ET), una neoplasia mieloproliferativa. Soy una mujer latina, y mi camino hasta el diagnóstico llevó mucho tiempo.

Recordando mi experiencia, mis síntomas empezaron con fuertes dolores de cabeza y mareos que me impedían terminar mi trabajo. También experimenté una fatiga debilitante que me mantenía en cama durante un día o me hacía sentir como si mi visión y mi pensamiento estuvieran nublados. Todo era muy extraño y fui al médico, que me recetó antibióticos para una infección. Más tarde sentí entumecimiento y hormigueo en las manos y los pies, y luego dolor en el abdomen. Finalmente, mi médico decidió hacerme análisis de sangre completos para ver qué niveles podían ser anormales, a lo que siguió una biopsia de médula ósea para investigar más a fondo.

Cuando finalmente recibí el diagnóstico de trombocitemia esencial, sentí cierto alivio, pero también una sensación de hundimiento y temor ante lo que podría esperarme. Creo que uno de los problemas a la hora de recibir el diagnóstico puede haber sido que parecía saludable. Tal vez mi médico habría pedido los análisis de sangre antes si no tuviera buen aspecto. Pero intento mirar hacia delante y no hacia atrás.

Me recomendaron un especialista en MPN, que inicialmente me recetó una dosis baja de aspirina. Luego me recetó hidroxiurea (Hydrea). Me ha ido bien y me siento agradecida por tener opciones de tratamiento. Pero si mi enfermedad avanza hasta un punto en el que necesite otras opciones, ya he decidido que consideraré participar en un ensayo clínico. Creo que he sido relativamente afortunada y quiero compartir mi historia sobre el cáncer para ayudar a otras personas.

Algunas de las cosas que he aprendido en mi camino hacia MPN son:

  • Empodérate haciendo preguntas a sus médicos sobre su MPN y sobre lo que puede esperar antes, durante y después del tratamiento.
  • Infórmese sobre las opciones de ensayos clínicos. Puede haber programas que le ayuden con los gastos de viaje, alojamiento y otros gastos no cubiertos. Y los ensayos clínicos pueden ofrecer una opción para su MPN si ya ha utilizado todas las demás opciones.
  • Tú eres la persona responsable de tu salud. Si cree que algo va mal en su cuerpo, defiéndase. Pida que le hagan más pruebas para averiguar qué le pasa.
  • Tenga cuidado con dónde busca información sobre el cáncer. Utiliza fuentes creíbles como MPN Research Foundation, The Leukemia & Lymphoma Society y Patient Empowerment Network.

Estas acciones fueron clave para mantenerme en mi camino hacia el empoderamiento.

Share Your Feedback

Create your own user feedback survey

Yolanda’s Story: My Path to a Myeloproliferative Neoplasm Diagnosis

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

Yolanda’s Story: My Path to a Myeloproliferative Neoplasm Diagnosis from Patient Empowerment Network on Vimeo.

Latina essential thrombocythemia (ET) patient Yolanda had many symptoms before receiving her ultimate diagnosis. Watch as she shares the symptoms she experienced, her long path to diagnosis, and her lessons learned about patient empowerment.

See More From [ACT]IVATED MPN

Related Resources:

Are MPN Risks and Outcomes Impacted by Race or Ethnicity

Are MPN Risks and Outcomes Impacted by Race or Ethnicity?

 Un diagnóstico de linfoma difuso de células B grandes el viaje de un paciente

La historia de Yolanda: mi camino hacia un diagnóstico de neoplasia mieloproliferativa

 Are There Disparities in Stem Cell Transplant Outcomes

Are There Disparities in Stem Cell Transplant Outcomes?

Transcript:

My name is Yolanda, and I was diagnosed in my mid-40s with essential thrombocythemia (ET), a myeloproliferative neoplasm. I’m a Latina woman, and my path to diagnosis took an extended time.

Thinking back on my journey, my symptoms began with severe headaches and dizziness that made it too difficult to finish my work. I also experienced debilitating fatigue that would either keep me in bed for a day, or I’d feel like my vision and thinking were in a fog. It all felt very strange, and I saw my doctor about the symptoms, but he prescribed antibiotics for an infection. Then later I felt numbness and tingling in my hands and feet and then pain in my abdomen. Finally, my doctor decided to run full blood work to see which levels might be abnormal, and that was followed with a bone marrow biopsy to further investigate.

When I finally received my diagnosis with essential thrombocythemia, I felt some relief but also a sinking feeling and dread of what might be ahead for me. I feel like one issue with getting diagnosed may have been that I looked healthy. Maybe my doctor would have ordered the blood work sooner if I didn’t look well. But I try to look forward rather than back. An MPN specialist was recommended to me, and he initially put me on low-dose aspirin.

Then I was prescribed hydroxyurea (Hydrea). I’ve been doing well and feel grateful to have treatment options. But if my disease progresses to a point where I need other options, I’ve already decided that I’ll consider participating in a clinical trial. I feel like I’ve been relatively lucky and want to share my cancer story to help others.

Some of the things I’ve learned on my MPN journey include:

  • Empower yourself by asking your doctors questions about your MPN and what to expect before, during, and after treatment.
  • Learn about clinical trial options. There may be programs that will help you with travel, lodging, and other uncovered expenses. And clinical trials may provide an option for your MPN if you’ve already used all other options.
  • You are the person in charge of your health. If you feel like something is wrong in your body, advocate for yourself. Ask for more testing to find out what is wrong.
  • Be careful about where you look for cancer information. Use credible sources like MPN Research Foundation, The Leukemia & Lymphoma Society, and Patient Empowerment Network.

These actions were key for staying on my path to empowerment.

Share Your Feedback

Create your own user feedback survey

How Can MPN Providers and Patients Guard Against Disease Progression?

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

How Can MPN Providers and Patients Guard Against Disease Progression? from Patient Empowerment Network on Vimeo.

How exactly can myeloproliferative neoplasm (MPN) providers and patients guard against disease progression? Expert Natasha Johnson explains the likelihood of disease progression and the importance of monitoring blood cell counts and symptoms for optimal care.

[ACT]IVATION TIP

“…monitor your blood cell counts, be your own advocate. Think about if they’re changing, could it be medication, or is it disease progression? Monitor your symptoms. Look at the total symptoms score or write down your symptoms and try to record where you’re at in intervals. Are things getting worse? If they are, don’t wait three months for your next appointment. Contact your healthcare provider and ask to be seen. Ask about getting a repeat bone marrow biopsy to establish where the current disease status is because that can open up doors possibly to more treatments.”

Descargar Guía|Download Guide 

See More From [ACT]IVATED MPN

Related Resources:

How Can MPN Experts Help Inform Patients About Clinical Trials

How Can MPN Experts Help Inform Patients About Clinical Trials?

 Myeloproliferative Neoplasm Financial and Care Resources

Myeloproliferative Neoplasm Financial and Care Resources

 How Can Underrepresented MPN Communities Access Support

How Can Underrepresented MPN Communities Access Support

Transcript:

Natasha Johnson:

There is a risk for progression for patients with MPN. When we look at this, we know that myeloproliferative neoplasms is really an umbrella term for three different diseases that run along a continuum. And they all are unique in that they have an overactive JAK-STAT pathway. And in that, they have very similar disease characteristics and driver mutations. So with that, progression is possible. It doesn’t mean that it’ll happen. It doesn’t matter what the percentage is. We don’t know that, we can’t say it definitely happens, but it’s something that we watch for. We educate you on those signs and symptoms of progression. So this could be caught early and be activated on early. So what are signs of progression? Progression can be thought as if you start to see changes in blood cell counts.

So this could mean a decrease in hemoglobin or platelets, or a rise or decrease in white blood cell counts. Now it’s very important to remember that sometimes changes in blood cell counts is really a side effect to medication, and that needs to be thought of before you think about disease progression. But it’s changes in these counts that don’t improve despite modifying the dose of medication. Another sign of disease progression is an increase or worsening in symptoms.

And here is where it’s important to know what the symptoms are and try to think about or keep a record in where you were and then where you are at today. When we think progression may be happening, it is important that your provider order a bone marrow biopsy, because that helps to reestablish current disease status, and it helps to guide treatment. Maybe it opens doors for more treatments.

My activation tip here would be, number one, monitor your blood cell counts, be your own advocate. Think about if they’re changing, could it be medication, or is it disease progression? Monitor your symptoms. Look at the total symptoms score or write down your symptoms and try to record where you’re at in intervals. Are things getting worse? If they are, don’t wait three months for your next appointment. Contact your healthcare provider and ask to be seen. Ask about getting a repeat bone marrow biopsy to establish where the current disease status is because that can open up doors possibly to more treatments. 

Share Your Feedback

Create your own user feedback survey

How Can MPN Experts Help Inform Patients About Clinical Trials?

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

How Can MPN Experts Help Inform Patients About Clinical Trials? from Patient Empowerment Network on Vimeo.

What are optimal ways for myeloproliferative neoplasm (MPN) experts to inform patients about clinical trials? Expert Natasha Johnson shares how she prepares herself, her approach to informing patients, and how she reacts if she senses patient hesitancy.

[ACT]IVATION TIP

“…go on clinicaltrials.gov, search up MPN trials, and that will first clue you into could you be eligible and where are they being done. And then you can contact that center or ask about it where you’re being seen locally and just get information. You’re not committing to it completely. Minds can be changed at any time.”

Descargar Guía|Download Guide 

See More From [ACT]IVATED MPN

Related Resources:

How Can MPN Providers and Patients Guard Against Disease Progression

How Can MPN Providers and Patients Guard Against Disease Progression?

 How Can MPN Patient Advocacy Groups Help Patients

How Can MPN Patient Advocacy Groups Help Patients?

 How Can Underrepresented MPN Communities Access Support

How Can Underrepresented MPN Communities Access Support

Transcript:

Natasha Johnson:

As a provider of MPN patients, I first make sure that I am educated on what clinical trials are available and out there. And then when I see patients, I offer these options. I’m a strong, strong advocate for clinical trials because if it wasn’t for them, we wouldn’t have the medications that we have today. And just in the last several years, we’ve had many medications approved for MPNs that we didn’t have 15 years ago, and all that was done by clinical trials. I have on firsthand seen benefits of clinical trials.

So I strongly encourage patients to be a part of that. If there’s hesitancy from the patient or caregiver, I would take time to dig into that and help to answer or alleviate fears that come along with that. It’s important that the clinical trial coordinator who knows specific protocols of trials very, very well, they can come in the room or spend time on the phone with the patient to answer any questions, to alleviate fears and allow that opportunity if a patient is open and willing to do it.

So my activation tip would be first of all, go on clinicaltrials.gov, search up MPN trials, and that will first clue you into could you be eligible and where are they being done? And then you can contact that center or ask about it where you’re being seen locally and just get information. You’re not committing to it completely. Minds can be changed at any time. The clinical trials are greatly, greatly, greatly beneficial and as I said, we have what we have today because of patients who participated in clinical trials 10, 20 years ago and then have given these great opportunities to patients now. 

Share Your Feedback

Create your own user feedback survey

How Can MPN Patient Advocacy Groups Help Patients?

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

How Can MPN Patient Advocacy Groups Help Patients? from Patient Empowerment Network on Vimeo.

What are some ways myeloproliferative neoplasm (MPN) patient advocacy groups can help support patients? Expert Natasha Johnson explains different ways that advocacy groups can help MPN patients in their care, her experience with advocacy groups, and other health professionals who can aid in patient support.

[ACT]IVATION TIP

“…look out for and research MPN support groups. You can do this under the MPN Foundation, or there are other resources to find a way to attend those. You may get so much information that you were unaware of. And then also keeping in good communication with your nursing team, your healthcare team, and if any problems come up, or great barriers such as financial assistance for medication, reaching back out to the pharmacy or the pharmacist where that was sent through to ask for assistance and help.” 

Descargar Guía|Download Guide 

See More From [ACT]IVATED MPN

Related Resources:

How Can Myeloproliferative Neoplasm Care Barriers Be Overcome

How Can Myeloproliferative Neoplasm Care Barriers Be Overcome?

 Myeloproliferative Neoplasm Financial and Care Resources

Myeloproliferative Neoplasm Financial and Care Resources

 How Can MPN Experts Help Inform Patients About Clinical Trials

How Can MPN Experts Help Inform Patients About Clinical Trials?

Transcript:

Natasha Johnson:

There are several unsung heroes that work with the MPN population and are just not known, but offer great, great resources and can be utilized. First, I’ll start off saying with, there are foundations, for example, the MPN Foundation where it’s a large patient advocacy group that comes along and they establish support groups all over the United States, and they invite patients and caregivers to come and join, whether in-person or through Zoom. And through those meetings, sometimes experts are brought in and taught. Sometimes the nurses are brought in and taught and just provide resources, education to patients, and also just to help answer questions. Through attending those meetings, maybe you can also get in to see an MPN expert. So I would strongly encourage the use of these foundations and these support groups because these are people, that they’re not in the clinic setting day-to-day.

They may be a patient themself who has had MPN for a long time, but now they’re overseeing and heading up the support group. Sometimes it’s a family member of a patient who’s now overseeing and heading up the support group. Additionally, there are pharmacists who are well-versed in MPNs and the medications and can guide and direct exactly where to go to get help when it comes to financial assistance for treatment. And then, of course, nurses. Nurses are just such a key player here that they take the time to listen and to educate and to answer questions or direct.

And so my activation tip would be to one, look out for and research MPN support groups. You can do this under the MPN Foundation, or there are other resources to find a way to attend those. You may get so much information that you were unaware of. And then also keeping in good communication with your nursing team, your healthcare team, and if any problems come up, or great barriers such as financial assistance for medication, reaching back out to the pharmacy or the pharmacist where that was sent through to ask for assistance and help. 

Share Your Feedback

Create your own user feedback survey

How Can Underrepresented MPN Communities Access Support?

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

How Can Underrepresented MPN Communities Access Support? from Patient Empowerment Network on Vimeo.

What are some ways for underrepresented myeloproliferative neoplasm (MPN) communities to access support? Expert Natasha Johnson shares ways that she’s helped inform patients about resources and clinical  trial information to help bridge gaps in care.

[ACT]IVATION TIP

 “…try to get into a large cancer center or academic center and see an MPN expert. Many times, this is just by self-referral. Charity is sometimes provided through these. Zoom visits can be done as consults or follow-up visits. So my encouragement would be search these out, find out who the experts are, and contact them directly and see if there is any possibility or a way that you can get in to see an MPN expert for a consult so you can get the best care possible.”

Descargar Guía|Download Guide 

See More From [ACT]IVATED MPN

Related Resources:

How Can Myeloproliferative Neoplasm Care Barriers Be Overcome

How Can Myeloproliferative Neoplasm Care Barriers Be Overcome?

 Myeloproliferative Neoplasm Financial and Care Resources

Myeloproliferative Neoplasm Financial and Care Resources

 How Can MPN Patient Advocacy Groups Help Patients

How Can MPN Patient Advocacy Groups Help Patients?

Transcript:

Natasha Johnson:

From a nursing perspective, there are several gaps that affect our underrepresented communities. And unfortunately, these are patients who are very late diagnosed, maybe incorrectly diagnosed, and even underdiagnosed because there is difficulty with access to care and then getting treatment. And here’s where it’s important that as providers, as nurses, we’re educating the community. We’re educating the public health department on these diseases to help pick up for that. We’re making people and patients aware of these diseases to help pick up on that. And there are many resources that are available online for free.

There are also local support groups for patients with MPNs and their caregivers that you can join in-person or on Zoom that provide just education resources on new trials that are out there or new treatments that are out there. Patients themselves can research clinical trials by looking at clinicaltrials.gov and see what’s out there and contact the academic center that’s performing those trials. There’s free information online that provides recorded sessions from conferences or speakers or speaking done by the MPN experts that you can just look to and get to easily to help understand the disease, knowing the symptoms, and then guiding treatment.

If you belong to an underrepresented community, my activation tip would be to try to get into a large cancer center or academic center and see an MPN expert. Many times, this is just by self-referral. Charity is sometimes provided through these. Zoom visits can be done as consults or follow-up visits. So my encouragement would be search these out, find out who the experts are, and contact them directly and see if there is any possibility or a way that you can get in to see an MPN expert for a consult so you can get the best care possible. 

Share Your Feedback

Create your own user feedback survey