Tag Archive for: City of Hope

Dr. Idoroenyi Amanam: Why Is It Important for You to Empower MPN Patients?

Dr. Idoroenyi Amanam: Why Is It Important for You to Empower MPN Patients? from Patient Empowerment Network on Vimeo.

How can myeloproliferative neoplasm (MPN) care providers empower their patients? Hematologist-oncologist Dr. Idoroenyi Amanam from City of Hope shares his perspective of his experience with a family member going through cancer. Dr. Amanam explains how that experience helped mold his approach to informing and empowering patients in their cancer journeys.

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Dr. Ebony Hoskins: Why Is It Important for You to Empower Patients?

Dr. Ana Maria Lopez Why Is It Important for You to Empower Patients

Dr. Ana Maria Lopez Why Is It Important for You to Empower Patients

Transcript:

Dr. Indoroenyi Amanam: 

I know from personal experience, I’ve had a family member who had cancer and had to struggle with therapy and some of the complications associated with therapy. And I felt that her doctor was really good with giving a…giving us an understanding of what was up next for us, giving us an understanding of what the disease meant for her, and really just helped us wrap our heads around what was about to happen. And I think that’s tough when you get a diagnosis and things have to happen very fast. I think we…you’re diagnosed by possibly an ER doctor or a general practitioner. Then you’re sent as a referral to an oncologist who has 30 minutes to talk to you about your diagnosis and ready. Then they scheduled possibly for you to get a port and/or you have to get imaging, or you have to go and get another biopsy, or another procedure.

And a lot of the time that you’re spending at the hospital is really by going to these different appointments, but actually not really talking to anyone about what this really means. And so from my own personal experience of going through it with a family member, I think it’s really important to try to help patients understand what’s really going to happen, what this means for them long term, what the treatments…what the complications are associated with that.

And I know that most of our…most of my colleagues, they do that. And I know that we all want to ensure that our patients have great outcomes, but I do think that having that personal experience does give me some type of connection to patients in possibly in a different way. And so I just want to empower them with understanding that this is something that wasn’t expected. There are a lot of things that have to happen. Here’s what we need to do, and I’m there for you, and I’m there to support you in any way possible that I can to help you get through this.

Emerging MPN Therapies in the Research Pipeline

Emerging MPN Therapies in the Research Pipeline from Patient Empowerment Network on Vimeo.

What emerging myeloproliferative neoplasm (MPN) therapies are in the research pipeline? Expert Dr. Idoroenyi Amanam from City of Hope discusses MPN treatments that are under study, what the therapies target in MPN patients, and the outlook for the future of MPN care.

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Related Resources:

Have MPN Disparities Been Addressed by Institutions?

Have MPN Disparities Been Addressed by Institutions?

Graft-Versus-Host Disease Risk for BIPOC Patients

Graft-Versus-Host Disease Risk for BIPOC Patients

Are There Disparities in Stem Cell Transplant Outcomes

Are There Disparities in Stem Cell Transplant Outcomes

Transcript:

Lisa Hatfield:

Dr. Amanam, can you speak to any exciting new developments in MPN care or trials that you see moving forward with great progress?

Dr. Indoroenyi Amanam:

Yeah. I think for MPNs and namely really the classic BCR-able or Philadelphia chromosome-negative MPNs, which include essential thrombocythemia, polycythemia vera, and myelofibrosis. I think we have a lot of exciting therapies that are going to be possibly FDA-approved in the next couple of years. So currently, for essential thrombocythemia, really the dogma therapy is related to keeping the counts under control and giving a therapy to reduce the risk of having a blood clot or stroke. We actually are in a space where we have therapies that are going to be targeting the underlying clone or basically the cells that are driving the proliferation of these platelets that lead to high platelet counts. And so I think that’s exciting.

So we do know that, in MPN there is an overexpression of Bcl-xL, and there’s a drug that targets Bcl-xL. And we’ve seen really great responses in essential thrombocythemia. And as a segue, this drug also targets the same cells and polycythemia vera and myelofibrosis, and we’ve seen really great responses in those patients. We also have had difficulty in managing patients who have myelofibrosis, but have very low counts. And typically the FDA-approved drugs that we’ve been using actually make the counts worse.

And so there are multiple drugs that are in the pipeline that are helping patients with low blood counts. And what they do is they help increase your red blood cells and reduce your requirements for red blood cell transfusions.

And one of the drugs helps stimulate erythropoiesis, and it’s an injection. And we’ve seen really good results in reducing the risk of…or reducing the amount of transfusions that patients receive. And then another one of these drugs targets ACVR1, which we understand that in myelofibrosis, you have overproduction of hepcidin, which leads to worsening anemia. And so by targeting ACVR1, it helps control this hepcidin. And by doing that these patients have improved red blood cell counts. And so that’s another drug that likely will be coming…that will be FDA-approved very soon, and I think will help patients in this space.

We also are interested in immunotherapy. And I think in other cancers, immunotherapy has been very successful in eradicating those cancer cells and curing some patients. And so there are clinical trials looking at a vaccine which targets certain mutations that are relevant to MPN patients. And also we are interested in actually using other types of immunotherapy namely, CAR T, which really helps connect your own immune cells to these cancer cells to help clear them out. And so I think over in the next five to 10 years, there’re going to be a lot of drugs and a lot of therapies that are going to really help patients who have MPNs.


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Graft-Versus-Host Disease Risk for BIPOC Patients

Graft-Versus-Host Disease Risk for BIPOC Patients from Patient Empowerment Network on Vimeo.

Is there a higher graft-versus-host disease risk for some BIPOC patients? Expert Dr. Idoroenyi Amanam from City of Hope explains bone marrow transplant challenges for African American and Hispanic patients and where research stands on improving transplant outcomes.

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See More From [ACT]IVATED MPN

Related Resources:

Have MPN Disparities Been Addressed by Institutions?

Have MPN Disparities Been Addressed by Institutions?

Understanding MPN Treatment Goals and Shared Decision-Making

Understanding MPN Treatment Goals and Shared Decision-Making

Emerging MPN Therapies in the Research Pipeline

Emerging MPN Therapies in the Research Pipeline

Transcript:

Lisa Hatfield:

Do certain populations have a higher risk of graft-versus-host disease after stem cell transplantation?

Dr. Indoroenyi Amanam:

Yes. So, we do know that there are differences in outcomes for African Americans and Hispanics compared to whites after transplant. And we think aside from just the fact that African Americans and Hispanics have a lower chance of having full matched donors, there are other genetic variations that we can’t account for currently that may explain the reasons why they have poor outcomes post-transplant. And one of those issues is related to graft-versus-host disease.

And so, we do know that if you have a donor who’s not a complete match, you have a higher risk of having graft-versus-host disease. And we also know that if you’re an African American and Hispanic, you also have higher risk for graft-versus-host disease. And so I think there’s still a lot of work to be done for us to really understand, one, why that’s the case. 


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Bone Marrow Registries | What Myeloproliferative Neoplasm Patients Should Know

Bone Marrow Registries | What Myeloproliferative Neoplasm Patients Should Know from Patient Empowerment Network on Vimeo.

What do myeloproliferative neoplasm (MPN) patients need to know about bone marrow registries? Expert Dr. Idoroenyi Amanam from City of Hope discusses bone marrow registries and what’s involved in serving as a bone marrow donor.

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Related Resources:

Have MPN Disparities Been Addressed by Institutions?

Have MPN Disparities Been Addressed by Institutions?

How Can MPN Clinical Trials Be Diversified?

How Can MPN Clinical Trials Be Diversified?

Emerging MPN Therapies in the Research Pipeline

Emerging MPN Therapies in the Research Pipeline

Transcript:

Lisa Hatfield:

Dr. Amanam, I’m going to preface this question with, there is a bone marrow registry out there called Be The Match. So this is a three-part question. Do you know of any other bone marrow registries, is the first part? The second part is, how can we encourage donors from different ethnic backgrounds to join the bone marrow registry? And third part, how would that help your MPN patients from marginalized communities?

Dr. Indoroenyi Amanam:

Very good question. Our National Marrow Donor Program is integrated with other bone marrow registries internationally. And so I do believe that Be The Match is the best place that potential donors should reach out to if they’re interested in being a bone marrow donor. What was the second part of that question? I’m sorry.

Lisa Hatfield:

So the second part is, how can we encourage donors from different ethnic backgrounds to join the bone marrow registry?

Dr. Indoroenyi Amanam:

Sure. I know that the National Marrow Donor Program has had an interest for a very long time in increasing donors from specific ethnic groups. And I think it’s important for us to understand what a donor actually does, and the issues associated with being a donor. Being a bone marrow transplant donor I think is important, because you can save someone’s life. And being a donor really means that you go and get tested to be a donor, and you’re placed in a registry, and they may give you a call years from now that there’s someone that is a match based off of your genes.

And you would then be called to go in and do some additional blood testing. And then if you are able to get through that process, you meet with a doctor who’s connected to the National Marrow Donor Program, and they’ll ask a couple of questions related to your health history and do some additional testing. And once you get through that and you’re cleared to be a donor, there are really two different ways that you can be a bone marrow donor.

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.


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Are There Disparities in Stem Cell Transplant Outcomes?

Are There Disparities in Stem Cell Transplant Outcomes? from Patient Empowerment Network on Vimeo.

What do myeloproliferative neoplasm (MPN) patients need to know about disparities in stem cell transplant outcomes? Expert Dr. Idoroenyi Amanam from City of Hope explains key factors that impact the outcomes of stem cell transplants and the importance of finding fully matched donors.

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Related Resources:

Are There Any MPN Disparities in Subtypes and Genetics

Are There Any MPN Disparities in Subtypes and Genetics?

Understanding MPN Treatment Goals and Shared Decision-Making

Understanding MPN Treatment Goals and Shared Decision-Making

Emerging MPN Therapies in the Research Pipeline

Emerging MPN Therapies in the Research Pipeline

Transcript:

Lisa Hatfield:

Dr. Amanam, does race or ethnicity play a role in outcomes of stem cell transplantation?

Dr. Indoroenyi Amanam:

Yes. There have been some really great studies looking at this. And I think in general, we know that health disparities are a major issue for racial, ethnic, and socioeconomic disadvantaged groups. Stem cell transplant is a curative therapy for blood disorders. And we’ve looked at a variety of different, there have been multiple approaches to assess like where these disparities come from or if there are disparities from specific groups. And I think the Affordable Care Act was great in allowing expansion and insurance coverage to multiple groups and increased access to care. But that hasn’t solved the problem.

And so, one of the issues we’ve seen is that providers themselves do not refer patients proportionately. So from proportion if you’re African American, Hispanic, if you are coming from a ZIP code that your meaning income is lower, that there are some instances where referrals for transplant don’t occur in equal rates.

And we’ve also seen that even if you’re insured and you’re African American or Hispanic, referral rates are still lower. And so that’s something that, it’s something that we have to work to improve. And you know, one big thing for transplant is that you have to have donors. You have to have donors who are matches for these patients who have these disorders who need a transplant. And we do know that African Americans, Hispanics, and Asians have lower chances of finding a fully matched donor compared to white Americans. And so, why that’s really important is that when you look at rates of complications after transplant, we do know that the level of match of the donor does play a part in that. Namely the chances of the patient relapsing after the bone marrow transplant and the rates of graft-versus-host disease are significantly higher.


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Understanding MPN Treatment Goals and Shared Decision-Making

Understanding MPN Treatment Goals and Shared Decision-Making from Patient Empowerment Network on Vimeo.

Myeloproliferative neoplasm (MPN) treatment goals can vary widely among patients, so how do care providers work with different goal types? Expert Dr. Idoroenyi Amanam from City of Hope explains how treatment approaches can vary, his perspective in shared decision-making, and advice for patients to receive optimal care.

[ACT]IVATION TIP:

“I would recommend that you get a clear expectation, with your diagnosis as to what that means for you specifically and what the treatments will do for you short-term and long-term.”

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Are There Any MPN Disparities in Subtypes and Genetics

Are There Any MPN Disparities in Subtypes and Genetics?

How Can MPN Clinical Trials Be Diversified?

How Can MPN Clinical Trials Be Diversified?

Graft-Versus-Host Disease Risk for BIPOC Patients

Graft-Versus-Host Disease Risk for BIPOC Patients

Transcript:

Lisa Hatfield:

 So, Dr. Amanam, you probably have patients coming in with a wide spectrum of knowledge from patients who want to be told what to do for treatment to patients who might even bring in abstracts from ASCO and ASH. So how do you work with your patients to make those treatment decisions? And a second part to that question is, with increasing treatment options, what should your MPN patients consider when deciding on treatments?

Dr. Indoroenyi Amanam:

So I believe that it’s very important to understand contextually where the patient’s coming from. And you’re right, I think some patients actually want to receive a presentation on the data. From a randomized Phase III clinical trial, there are some patients who are not interested in hearing about the data. They just want you to tell them what you think. And I think understanding where a patient’s coming from is very important. And so I believe, at least from my experience with the diversity of experiences in my own life, that I have the capacity to really gauge what patients need in order to proceed forward with the treatment that they’re most comfortable with. I think that’s the answer to that question. For with…in regards to increasing treatment options, it’s difficult because I think we’re in a very exciting time for MPN patients, we have a lot of treatment options.

We have a lot of clinical trials, we have a lot of…we have more FDA-approved therapies than we did 10 years ago. And I think it’s important to set the expectations as to what a therapy does. So some therapies will potentially decrease the risk of the disease progressing. There are some therapies that really help improve symptoms. There are some therapies that do both, and I think it’s very important to be very clear as to what each individual therapy does and the side effects associated with those therapies. And it usually, for the most part, patients are pretty…they declare themselves as to what they’re looking for. I think everyone walking into a room who’ve been told that they have cancer, they want to cure, but once you set the expectations that for MPNs this is possibly a chronic disease, and there are some issues associated with the chronic disease that we have to manage. And I think once it’s clear as to what MPN means for the patients, it changes the understanding of wanting a cure.

And I think, I will say I want for us to get to a point where we can cure all patients, but we don’t, we aren’t not there yet. And so ensuring that patients have a good quality of life is the most important thing for me and really being happy with what we’re doing in terms of treatment.

So my activation tip for this question is, I would recommend that you get a clear expectation, with your diagnosis as to what that means for you specifically and what the treatments will do for you short-term and long-term.


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How Can MPN Clinical Trials Be Diversified?

How Can MPN Clinical Trials Be Diversified? from Patient Empowerment Network on Vimeo.

How can myeloproliferative neoplasm (MPN) clinical trials participants become more diversified? Expert Dr. Idoroenyi Amanam from City of Hope explains how MPN clinicians, institutions, pharma companies, and others can help expand the participant pool for all population groups.

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Related Resources:

What Does the Future of Myeloproliferative Neoplasm Care Look Like?

What Does the Future of Myeloproliferative Neoplasm Care Look Like?

Understanding MPN Treatment Goals and Shared Decision-Making

Understanding MPN Treatment Goals and Shared Decision-Making

Graft-Versus-Host Disease Risk for BIPOC Patients

Graft-Versus-Host Disease Risk for BIPOC Patients

Transcript:

Lisa Hatfield:

Dr. Amanam, how can we better encourage more diverse participation in MPN or any cancer clinical trials?

Dr. Indoroenyi Amanam: 

This is a great question. 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. I think we put so much of responsibility on the clinical trial participants, and we’ve spent many years really analyzing or thinking about the reasons why the clinical trial participants are not or the lack of clinical trial participants is from specific groups.

But I think we have to put that look at us, the scientists, the physicians, the institutions, the companies. What are we not doing right here? And I think we have to put a lot of energy there. 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.


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MPN-Related Complications | Are BIPOC Patients at Higher Risk?

MPN-Related Complications | Are BIPOC Patients at HIgher Risk? from Patient Empowerment Network on Vimeo.

Are BIPOC myeloproliferative neoplasm (MPN) patients at higher risk of MPN-related complications? Expert Dr. Idoroenyi Amanam from City of Hope explains risk factors for MPN-related complications and proactive questions to ask your doctor.

[ACT]IVATION TIP:

“If you have a myeloproliferative disorder, I would want you to check with your doctor if you have a risk or you do have diabetes or high blood pressure, high cholesterol, and if so, how can you improve that diagnosis in order to decrease your risk or complications related to your MPN.”

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Are MPN Risks and Outcomes Impacted by Race or Ethnicity

Are MPN Risks and Outcomes Impacted by Race or Ethnicity

How Can MPN Clinical Trials Be Diversified?

How Can MPN Clinical Trials Be Diversified?

Bone Marrow Registries | What Myeloproliferative Neoplasm Patients Should Know

Bone Marrow Registries | What Myeloproliferative Neoplasm Patients Should Know

Transcript:

Lisa Hatfield:

Dr. Amanam, what risk factors put the Hispanic and/or the Black population at a larger risk for MPNs?

Dr. Indoroenyi Amanam:

Yeah. So conventional risk factors such as atherosclerosis, high blood pressure, high cholesterol, diabetes, and smoking. We do know that in studies that those factors, potentially put you at higher risk for complications that are associated with myeloproliferative disorders. And we also know that, and, for example, if you’re an African American male, two in five African American males have high blood pressure. And when we look at all comers in the United States, only about a third of people have high blood pressure. So in that setting alone, 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.

So, Hispanics, for example, have you twofold, they’re twofold higher risk to be diagnosed with diabetes than Caucasians. So that’s another example. And so I would say for MPN, that’s actually low hanging fruit. That means we don’t have to give you a new therapy or a MPN-related therapy. We can help you by improving your diet. Really giving counseling for cessation of smoking, really, education related to physical activity and exercise. I do believe that those are modifiable risk factors that we can address. And MPN physicians or cancer doctors can help their patients by really educating them in that way.

Activation tip for this question. If you have a myeloproliferative disorder, I would want you to check with your doctor if you have a risk or you do have diabetes or high blood pressure, high cholesterol, and if so, how can you improve that diagnosis in order to decrease your risk or complications related to your MPN. 


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Have MPN Disparities Been Addressed by Institutions?

Have MPN Disparities Been Addressed by Institutions? from Patient Empowerment Network on Vimeo.

Have myeloproliferative neoplasm (MPN) disparities been addressed by institutions? Expert Dr. Idoroenyi Amanam from City of Hope explains MPN disparities that need to be improved, how institutions can collaborate on improvements, and how patients can advocate to lessen disparities.

[ACT]IVATION TIP:

“…we need to ask and understand the biology of different groups a bit better, and I would ask my provider, is your institution working towards that goal?”

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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?

MPN-Related Complications | Are BIPOC Patients at Higher Risk

MPN-Related Complications | Are BIPOC Patients at Higher Risk?

Bone Marrow Registries | What Myeloproliferative Neoplasm Patients Should Know

Bone Marrow Registries | What Myeloproliferative Neoplasm Patients Should Know

Transcript:

Lisa Hatfield:

So, Dr. Amanam, what can institutions do to better address racial and socioeconomic disparities in MPNs? And what has changed? Have there been improvements in that?

Dr. Indoroenyi Amanam:

Yeah, I think that along the lines of improving access to care and understanding what are the socioeconomic reasons for poor outcomes in specific groups, I do believe that from a scientific perspective, we have to understand why some specific groups have poor outcomes. So what are the biologic differences? And I do believe that centers should work together to get this understanding especially since MPNs are a rare disease. And each institution may not have the numbers to really be able to answer those questions.  So my activation tip for this question is, we need to ask and understand the biology of different groups a bit better, and I would ask my provider, is your institution working towards that goal?


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Are There Any MPN Disparities in Subtypes and Genetics?

Are There Any MPN Disparities in Subtypes and Genetics? from Patient Empowerment Network on Vimeo.

Are there any myeloproliferative neoplasm (MPN) disparities seen in subtypes and genetics? Expert Dr. Idoroenyi Amanam from City of Hope explains what studies have shown, the role of access to care, genetics of African Americans, and questions to ask your doctor. 

[ACT]IVATION TIP:

“…if you have a myeloproliferative neoplasm and you have some specific complications, and there are treatment options offered to you, I would ask your provider if there are any differences in outcomes related to if you are a Hispanic woman or if you’re a Black male, or if you’re a Caucasian female, I think it’s important to understand if there are potentially differences in the outcomes related to the treatments, and then you can maybe tailor your treatment specific to your ethnicity and sex.”

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Related Resources:

Myeloproliferative Neoplasm Basics for Newly Diagnosed Patients

Myeloproliferative Neoplasm Basics for Newly Diagnosed Patients

MPN-Related Complications | Are BIPOC Patients at Higher Risk

MPN-Related Complications | Are BIPOC Patients at Higher Risk?

Bone Marrow Registries | What Myeloproliferative Neoplasm Patients Should Know

Bone Marrow Registries | What Myeloproliferative Neoplasm Patients Should Know

Transcript:

Lisa Hatfield:

Dr. Amanam, can you speak to the disparities seen in MPNs and other subtypes and the role of genetics?

Dr. Indoroenyi Amanam:

Yeah, I think this is a great question, especially in the context of when we think about socioeconomic and racial disparities. I think that it is very important to continue to address those issues. I think the Affordable Care Act assisted in giving wider access to some patients who would not have the opportunity to receive care. But we have to go beyond the idea that race is a social construct. I think there are biologic differences. There are genetic hereditary differences between different groups. 

When you look at African Americans and you look at their genes and the median amount of genes of African descent. About half of African Americans have less than 80 percent of genes of African descent, which means that they’re biologically…there are biological differences that are related to their experience here in America and in the Western Hemisphere. And they have a more diverse gene pool, which may contribute or not contribute to cancers and other diseases. Other studies to really understand what are the scientific biologic hereditary differences and how we can improve those outcomes once we understand those. And so for MPNs, we don’t really have a good understanding of that, and I think that’s definitely a space for all of us within this disease for us to really improve upon.

My activation tip for this question would be, if you have a myeloproliferative neoplasm and you have some specific complications, and there are treatment options offered to you, I would ask your provider if there are any differences in outcomes related to if you are a Hispanic woman or if you’re a Black male, or if you’re a Caucasian female, I think it’s important to understand if there are potentially differences in the outcomes related to the treatments, and then you can maybe tailor your treatment specific to your ethnicity and sex.


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What Does the Future of Myeloproliferative Neoplasm Care Look Like?

What Does the Future of Myeloproliferative Neoplasm Care Look Like? from Patient Empowerment Network on Vimeo.

What does the future of myeloproliferative neoplasm (MPN) care look like for patients? Expert Dr. Idoroenyi Amanam from City of Hope explains how MPN treatments have changed in recent decades, symptoms that are relieved with treatments, and how treatments of the future may help patients.

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Related Resources:

Myeloproliferative Neoplasm Basics for Newly Diagnosed Patients

Myeloproliferative Neoplasm Basics for Newly Diagnosed Patients

Are There Disparities in Stem Cell Transplant Outcomes

Are There Disparities in Stem Cell Transplant Outcomes?

Are There Any MPN Disparities in Subtypes and Genetics

Are There Any MPN Disparities in Subtypes and Genetics?

Transcript:

Lisa Hatfield:

Dr. Amanam, what promising treatments are available for newly diagnosed MPN patients, and what questions should patients be asking? They come into your office scared to death and not even knowing what to ask. Do you have any suggestions for what those patients should be asking when they go in as a newly diagnosed patient?

Dr. Indoroenyi Amanam:

Right, right. Twenty years ago, we really didn’t have any therapies for most MPN patients, aside from performing phlebotomy and using non-specific therapies to try to help control their counts and therefore reduce their risk of clotting and stroke. We are getting to a point which is really exciting, where we actually are treating the underlying disease, meaning that the cells that are causing this cancer, we have been able to identify targets that will help eradicate those cells and, therefore, get rid of the cancer. And so we’re getting there. Unfortunately, we still are not there yet, and so when we look at the FDA-approved drugs in this space, really, they help control symptoms, they help control some of the associated complications with the disease, mainly when your spleen’s enlarged, and that potentially may affect your quality of life, mainly your nutritional status and your physical status, and so we do have drugs that are able to do that, that are FDA-approved right now.

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. Currently, the only defined curative therapy that we have, when I say defined, meaning that we have multiple studies that have shown that that’s the case, is bone marrow transplant. I’m a bone marrow transplanter, I do treat some of my MPN patients with bone marrow transplant to get rid of the underlying…those underlying cells that are driving this disease. But that’s a very intense therapy and it has its own associated complications. But we are…will be having other drugs that potentially we would be able to offer that are not as intense as bone marrow transplant.

And those include immunotherapy, other drugs that can target the signals that drive these cells to divide and multiply. Also there are within the bone marrow for patients that have myelofibrosis, which is one of the MPNs, we will be able to target the environment that allows for these cells to persist and grow. 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.


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Are MPN Risks and Outcomes Impacted by Race or Ethnicity?

Are MPN Risks and Outcomes Impacted by Race or Ethnicity? from Patient Empowerment Network on Vimeo.

Are myeloproliferative neoplasm (MPN) risks and outcomes impacted by patient race or ethnicity? Expert Dr. Idoroenyi Amanam from City of Hope explains common MPN symptoms, potential risks and outcomes, and patient advice for optimal care.

[ACT]IVATION TIP:

“…if you have stroke, heart attack, blood clots, abnormal counts, please follow up with your doctor and ensure that you get referred to the appropriate specialist to help assist in managing your complications.”

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Related Resources:

Myeloproliferative Neoplasm Basics for Newly Diagnosed Patients

Myeloproliferative Neoplasm Basics for Newly Diagnosed Patients

What Does the Future of Myeloproliferative Neoplasm Care Look Like?

What Does the Future of Myeloproliferative Neoplasm Care Look Like?

MPN-Related Complications | Are BIPOC Patients at Higher Risk

MPN-Related Complications | Are BIPOC Patients at Higher Risk?

Transcript:

Lisa Hatfield:

Dr. Amanam, how does race impact clinical MPN outcomes or complications? And are certain populations more susceptible to getting MPNs?

Dr. Indoroenyi Amanam:

Yeah, it’s a great question. I think, because of the fact that symptoms are not as clearly related to MPNs as opposed to some other diseases. So the major presenting symptoms for MPNs are related to high blood pressure or some other vascular abnormality, including strokes or blood clots. It takes a little work to diagnose MPN patients, and half of them are asymptomatic. And if you actually look at diagnosis rates, they’re one to three cases per 100,000 per year. And so this is very rare, and I think that we don’t have enough data to really understand if some groups are at higher risk to develop MPNs than others.

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 why that’s the case. So far we don’t have a clear signal for that, but I do think, in the same…the story that we understand for healthcare in general, there are some differences in terms of access to care, the quality of care that’s delivered in, you can guess that possibly that’s one of the reasons why that that affects African Americans and Hispanics disproportionately in this setting as well.

So my activation tip for this question would be if you have stroke, heart attack, blood clots, abnormal counts, please follow up with your doctor and ensure that you get referred to the appropriate specialist to help assist in managing your complications. 


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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.

[ACT]IVATION TIP:

“…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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Are MPN Risks and Outcomes Impacted by Race or Ethnicity

Are MPN Risks and Outcomes Impacted by Race or Ethnicity?

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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?

Transcript:

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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Why Should People With Prostate Cancer Share Emotional Issues With Their Team?

Why Should People With Prostate Cancer Share Emotional Issues With Their Team? from Patient Empowerment Network on Vimeo.

Prostate cancer expert Dr. Tanya Dorff explains common emotional issues that arise during treatment and monitoring, and why it’s important for patients to speak up about any feelings that may be causing distress.

Dr. Tanya Dorff is Associate Professor in the Department of Medical Oncology & Therapeutics Research at City of Hope. Learn more about Dr. Dorff.
 
 

Related Resources:

How Can Palliative Care Help People With Prostate Cancer?

Strategies for Treating Advanced Prostate Cancer Symptoms

What Is Personalized Prostate Cancer Medicine?


Transcript:

Katherine:

Beyond treatment, another large part of thriving with prostate cancer is dealing with the emotions that come along with the diagnosis, like fear and anxiety. Whether it’s the stress of being in active surveillance or worrying about progression, many patients need help coping emotionally. Why do you feel it’s so important for patients to share these emotions with their doctor or their healthcare team? 

Dr. Dorff:

I think it’s a conversation that’s not held enough between patients and their physicians, and if we don’t remember to ask our patients, we will just focus on the medical because that’s our main wheelhouse, that’s what we’re best at. So, if a patient brings forth that they’re having some emotions related to the cancer, it is helpful to us in remembering – we ought to do everything 100 percent all of the time, but let’s face it, we’re physicians with time pressures and certain areas of comfort and expertise. So, if a patient brings it up, that is super helpful because then we know someone’s needing assistance, which probably every patient is, whether they tell us or not, but that triggers us to then offer appropriate referrals. 

And also, it tells us they’re open to it. If we have to ask every patient, “Are you having any emotional distress?”, even if someone answers yes and then we make a referral, they may not have actually been ready for it or open to it. So, having the patient come forth and raise that, I think, is really helpful and important. 

How Can Palliative Care Help People With Prostate Cancer?

How Can Palliative Care Help People With Prostate Cancer? from Patient Empowerment Network on Vimeo.

Some prostate cancer patients may receive palliative care, but how is it used exactly? Expert Dr. Tanya Dorff explains research studies about palliative care and how it can be used to improve quality of life for patients.

Dr. Tanya Dorff is Associate Professor in the Department of Medical Oncology & Therapeutics Research at City of Hope. Learn more about Dr. Dorff.
 

Related Resources:

Managing the Side Effects of Advanced Prostate Cancer Treatment

Strategies for Treating Advanced Prostate Cancer Symptoms

What Is Personalized Prostate Cancer Medicine?


Transcript:

Katherine:

What is palliative care, and how can it help men with prostate cancer? 

Dr. Dorff:

Palliative care is something that we think about more towards the end of life, where we’re focusing on cancer symptoms more than treating cancer. However, some studies have shown – very prominent studies – that early palliative care in some malignancies is associated actually with better survival, meaning that paying attention to the patient’s symptoms is actually a really important part of keeping them well and keeping them alive as we treat the cancer. 

So, more and more, we’re starting to integrate palliative care earlier in the disease.  

I think that can sometimes signal a little alarm for patients – “Oh, I’m being referred to palliative care, that means my doctor doesn’t really think they can treat my cancer anymore” – and it’s gonna take some education to really help people transform their thinking about palliative care as a strategy that’s not for the end, but something that really should be part of our treatment all along. 

So, our palliative care team, or what we call supportive medicine at City of Hope, uses treatments to manage pain. They have a broader spectrum, they’re more focused on all the different modalities to treat pain, so an oncologist or urologist can treat pain, but when we refer to palliative or supportive medicine, you get just that extra expertise, especially if people are having a lot of side effects from pain medicines, but our supportive medicine doctors aren’t only pain management doctors. 

They help with other symptoms, like nausea or constipation, to some extent urinary symptoms for my prostate cancer patients, although we rely heavily on urology for that, and also just the existential, or spiritual, or emotional components. 

Our supportive medicine team typically includes not only an MD, an advanced practice provider like an NP, but also someone from psychology, someone from social work, because dealing with cancer is really stressful and challenging, and in an ideal world, palliative care is not only taking care of the symptoms of the cancer that are physical, but also helping the whole being, the whole family unit that’s going through this experience have less emotional distress as well.