Tag Archive for: blood cancers

Becoming an Empowered and [ACT]IVATED MPN Patient

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.

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.

See More from START HERE CLL

Related Programs:

Why Is Early Stage Chronic Lymphocytic Leukemia Treatment Delayed?

Why Is Early Stage Chronic Lymphocytic Leukemia Treatment Delayed?

Does Untreated Asymptomatic CLL Carry Risks?

Can Bone Marrow Return to Normal After CLL Treatment?

Can Bone Marrow Return to Normal After CLL Treatment?


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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Myeloproliferative Neoplasm Basics for Newly Diagnosed Patients

Myeloproliferative Neoplasm Basics for Newly Diagnosed Patients from Patient Empowerment Network on Vimeo.

What do newly diagnosed myeloproliferative neoplasm (MPN) patients need to know? Expert Dr. Idoroenyi Amanam from City of Hope shares how he explains the condition, possible MPN complications, and proactive questions to ask your doctor.


“…if you see high platelet counts on a routine blood check or high white blood cell counts or high red blood cell counts, you should ask your doctor to delve a little bit deeper to try to get an answer as to why your counts are presenting in that fashion.”

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Related Resources:

Are MPN Risks and Outcomes Impacted by Race or Ethnicity

Are MPN Risks and Outcomes Impacted by Race or Ethnicity?

What Does the Future of Myeloproliferative Neoplasm Care Look Like?

What Does the Future of Myeloproliferative Neoplasm Care Look Like?

Are There Disparities in Stem Cell Transplant Outcomes

Are There Disparities in Stem Cell Transplant Outcomes?


Lisa Hatfield:

Dr. Amanam, how do you explain MPN to your newly diagnosed patients?

Dr. Indoroenyi Amanam:

Yes, MPN is a very rare disorder, and so most patients haven’t heard of MPNs in comparison to breast cancer or colon cancer, and so it’s…sometimes it appears very ambiguous as to what it actually is, and for patients, I generally tell them that there’s some…it’s a disorder that causes increased production of their red blood cells or their platelets, or the cells that help support the tissue in their bone marrow. And there’s some complications associated with that, namely blood clots, strokes, and heart attacks. And there’s also a small risk of these patients converting over into more aggressive blood cancers, namely acute leukemia. 

So my activation tip for this question is that, if you see high platelet counts on a routine blood check or high white blood cell counts or high red blood cell counts, you should ask your doctor to delve a little bit deeper to try to get an answer as to why your counts are presenting in that fashion. 

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[ACT]IVATED MPN Resource Guide en español

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Spanish Activated MPN Resource Guide

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[ACT]IVATED MPN Resource Guide

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Activated MPN Resource Guide

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MPN Patient Shares Importance of Understanding Benefits of Professional Therapy

MPN Patient Shares Importance of Understanding Benefits of Professional Therapy from Patient Empowerment Network on Vimeo.

Myelofibrosis patient Julia Olff shares her experience with seeing a professional therapist via telemedicine as part of her MPN care.

See More From the MPN TelemEDucation Resource Center

Related Resource:


Julia Olff:

When I was diagnosed with myelofibrosis, I learned how important it was to continue therapy, so I had already started to see a therapist several years before that for a set of long-term issues in my life. But what I found over time, and I continue to find is the therapy has really helped me cope with not just some of the parts of my personal life that I’m still working through, but really helps me having a chronic illness, and I know from attending patient conferences, reading about myelofibrosis that there is…for one, a significant population of folks who suffer from anxiety with myelofibrosis. And that’s true for other blood cancers and chronic cancers, where there’s this, that there are ups and downs where you’re going through a period of stressful treatments, possibly followed by periods of monitoring or less treatment, and there’s always that fear of or worry about what may happen next, when might I develop a more serious mutation that will affect my prognosis, could I progress any time? Or there’s a smaller percentage of folks with myelofibrosis who can develop acute myelogenous leukemia, that’s always there. And I think therapy really helps for those sorts of outlook, long-term mindfulness, living in the present and gaining perspective about some of those fears. And I think the other part of therapy that’s so beneficial as it relates to having myelofibrosis is kind of learning to cope on a day-to-day basis, learning to think about yourself and your self-esteem that can get lost when you are feeling unwell for long periods of time. I’ve had months where I was deeply fatigued in terrible pain and doing a lot less and having to say no to my kids, I can’t do that, I can’t go here.

I remember going to back-to-school nights for my kids when they’re in high school, and I’m moving so slowly that I’m getting a teacher asking me, “Are you okay, do you need help?” And that can affect your sense of self, especially as you give up activities or work. I’ve reduced my workload significantly, and all to say is there is this dynamic of who you are as a person, that therapy I’ve found can help me get through so that I don’t lose who I am that helps really sustain my mental outlook.