Tag Archive for: City of Hope

Myelofibrosis Clinical Trials | The Benefits of Patient Participation

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How do clinical trials fit into a myelofibrosis treatment plan? Dr. Idoroenyi Amanam discusses the benefits of clinical trial participation and advice for patients who may be hesitant to join a trial. 

Dr. Idoroenyi Amanam is a specialist in myeloproliferative disorders and is an Assistant Professor in the Division of Leukemia at City of Hope. Learn more about Dr. Amanam.

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See More from Evolve Myelofibrosis

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Considering a Myelofibrosis Clinical Trial? Questions You Should Ask

 How Can You Learn More About Myelofibrosis Clinical Trials?

How Can You Learn More About Myelofibrosis Clinical Trials?

Transcript:

Katherine Banwell:

Dr. Amanam, where do clinical trials fit into a myelofibrosis treatment plan?  

Dr. Idoroenyi Amanam:

When you think about where we’re at right now in myelofibrosis, I think  from the scientific standpoint, it’s really exciting.  We’re understanding this disease so much better.  We have  a much clearer picture of how this disease works.  

But with that said, unfortunately, when you look at the drugs that we have available to us, we don’t really have that many still,  and so clinical trials play a big part in this disease space. Because there’s patients who are  very advanced when we diagnose them, and our FDA-approved therapies may not really make a big dent in their symptomology, may not change  what happens with the disease moving forward. And so, clinical trials do give patients such as that an opportunity to actually  get the disease under control. 

Katherine Banwell:

Well, as you mentioned, patients participating in trials are key to moving research forward, right? Can you talk about the benefits of clinical trial participation?  

Even though it – 

Dr. Idoroenyi Amanam:

Yeah – 

Katherine Banwell:

– might be scary for a lot of people. 

Dr. Idoroenyi Amanam:

Right, right. 

Katherine Banwell:

I think a lot of people still think, “Oh, I’m just going to get a placebo, and it’s not going to help me in any way,” but that isn’t really the case anymore, is it? 

Dr. Idoroenyi Amanam:

It’s not the case.  And I think the way that you can think about trials are, we use trials to give therapies that we view as very promising to patients who fall in a gap. And that gap may be that, even though we have FDA-approved drugs, we know that those drugs really may not work for that specific patient. And so, we have an understanding from either a different type of disease that’s very similar to myelofibrosis, or  our  scientific experience that there is a therapy that will work. And we want to use trials to be able to give that patient a chance to, kind of, get over that hump. 

And so, in today’s era, we don’t structure trials around therapies that we don’t believe actually work or  getting patients in trouble down the line. And so, we really, really do believe that our trials are, kind of, an extension of what we have currently  on the market, and so it is a part of our everyday armamentarium to fight this tough cancer. 

Katherine Banwell:

What would you say to patients who are hesitant of participating in a trial?  

Dr. Idoroenyi Amanam:

One, I’d really want to get a clear sense of what their hesitance is.  Is it that the trial would put them at higher risk for some sort of toxicity?  Is it that they’re worried that there’s some other therapy that’s out there that, potentially, would give them a better chance at fighting this disease? the third part of it, the unknown, is always scary for many people.  

And I think my job is to be a part of a patient’s team.  Talk through those concerns, get a sense if this is something that really is the best thing for them, or do we have something else that might be a better option? And unfortunately, there are some instances where I do believe the trial is the best option for a patient, but the patient does not feel comfortable, and we have to go down another path.  

And all of us, we will never force a patient to go down a path that they don’t feel comfortable with. We all believe in patient autonomy, but there are some instances where   the trial may be the best opportunity, and I will do my best job to advocate for that and come to a decision together with the patient. 

Why Myelofibrosis Patients Should Be Engaged in Their Care Decisions

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Dr. Idoroenyi Amanam, a myeloproliferative disorder specialist and researcher from City of Hope, shares expert perspective on the importance of patient participation in care and treatment decisions. Dr. Amanam emphasizes the necessity of having a care partner and utilizing all members of the healthcare team. 

Dr. Idoroenyi Amanam is a specialist in myeloproliferative disorders and is an Assistant Professor in the Division of Leukemia at City of Hope. Learn more about Dr. Amanam.

Download Resource Guide

See More from Evolve Myelofibrosis

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Promising Advances in Myelofibrosis Research | Optimism for Patients

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 Expert Perspective | A Concerted Effort to Advance Myelofibrosis Care

Expert Perspective | A Concerted Effort to Advance Myelofibrosis Care

Transcript:

Katherine Banwell:

Well, how do you encourage patients and care partners to be involved in decision making? Do you have any advice for them?  

Dr. Idoroenyi Amanam:

That’s a very important question, and it’s a tough one. And I will tell you, personally, I have family members who have medical  disorders that I think do require a lot of support from other family or friends. And  based off my experience, I encourage patients to involve their families in these discussions, because I don’t think  we’re at a space where things are very binary.  

I think the decisions that we make when we’re treating patients with myeloproliferative disorders and myelofibrosis, there are some nuances there, and I think family can really help the providers, in addition to the patients, in coming to the right decision about how we’re going to move forward.  

So, I think my advice is, involve your family, involve your friends.  I think having a community of support is very important when you have a type of disease such as this. 

Katherine Banwell:

And it’s important to have somebody there with you, a care partner or a friend, as you say, who may be able to ask questions that you, as the patient, haven’t thought of. Somebody there to take notes, just in case you need to refer to something after. 

Dr. Idoroenyi Amanam:

Absolutely. Absolutely, I agree. I think it’s a team from both sides  to, kind of, extend what you’ve said. To the medical side, the pharmacist may give me some input about  some things I may have missed with the patient,  the nurse practitioner in clinic, the RN in clinic,  the other staff.  

And  I think it’s one of those situations where the more people involved can help us, kind of, draw that picture better. I think we’re trying to get a sense of how we can move forward in the best way, and having all of those parties being active and offering  the best that they can is really helpful for everyone. 

Promising Advances in Myelofibrosis Research | Optimism for Patients

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 Dr. Idoroenyi Amanam from City of Hope discusses how the availability of newer JAK inhibitor therapies is providing better options for myelofibrosis patients. Dr. Amanam also shares how researchers are working to reduce the risk of disease progression and providing curative options for myelofibrosis.

Dr. Idoroenyi Amanam is a specialist in myeloproliferative disorders and is an Assistant Professor in the Division of Leukemia at City of Hope. Learn more about Dr. Amanam.

Download Resource Guide

See More from Evolve Myelofibrosis

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Myelofibrosis Clinical Trials | The Benefits of Patient Participation

Myelofibrosis Clinical Trials | The Benefits of Patient Participation

 Expert Perspective | A Concerted Effort to Advance Myelofibrosis Care

Expert Perspective | A Concerted Effort to Advance Myelofibrosis Care

 Updates in Myelofibrosis Research From an Expert

Updates in Myelofibrosis Research From an Expert 

Transcript:

Katherine Banwell:

Dr. Amanam the JAK inhibitor class of therapies often have side effects associated with them. What advancements are being made to manage these side effects? 

Dr. Idoroenyi Amanam:

Yeah. That’s a great question. And I would think about when these JAK inhibitors first  came out, I think we were all willing to accept the side effects because of the fact that you only had one JAK inhibitor, and then we now have more than one. We have a couple of JAK inhibitors, and I think the idea is that the biggest problem that we had with some of the JAK inhibitors were that  patients’ counts couldn’t tolerate higher doses of the JAK inhibitor.  

And we know that for some JAK inhibitors, you have to be at a baseline dose that will help with shrinking your spleen, or improving symptoms, and if you’re below that dose, it doesn’t work very well. And so,  we had a tough time   making adjustments based off of patients’ counts. And so, we have some newer JAK inhibitors that    patients tolerate    these drugs even though they have lower counts. And so, I think that’s one big change that we’ve all seen over the past five years.   

Katherine Banwell:

Is there anything else you’d like to add about advancements in myelofibrosis care?  

Dr. Idoroenyi Amanam:

I would say if we think about early stage, a patient who’s diagnosed, and they’re told that they’re early myelofibrosis, or what we really truly define as low risk myelofibrosis, we traditionally did not have any therapies for those patients, and I think that it’s exciting that we are in a space now where we are thinking about therapies for those patients, and therapies that will reduce the risk of progression to a more advanced stage of myelofibrosis.   

For patients who are in the middle, I think we’ve had a rapid expansion of therapies that are available to patients, and I think a lot of our clinical trials that are currently in play are really directed towards that group, and so that’s really exciting. And then for the high-risk patients, City of Hope is a bone marrow transplant center, cellular therapy center, and we have a lot of experience in performing allogeneic stem cell transplants for myelofibrosis patients.  

And I think across the country, we have gotten better at performing allogeneic stem cell transplants for myelofibrosis, and as of right now, it’s one of the few curative therapies that we have.  

And we have been able to understand how to get these patients through a very intense regiment and get them to the other side, and I think that’s also very exciting. We still have a lot of clinical trials in allogeneic stem cell transplant space as well. And so, I think we are in a place now where we have a therapy for everyone, if they choose to want one.  And not only a therapy just to bridge them, or treat their symptoms, but therapies that, potentially, will get rid of this disease.  

And I think for a patient, when you go to sleep at night, or when you talk with your family, the biggest worry is having something  that there’s no clear sense of we can get rid of it. And I think we’re getting to a better place where I can confidently tell patients we’re getting better at getting rid of this, and I think that’s the most exciting thing that we have right now.  

Katherine Banwell:

Yeah. It’s a promising field. 

Dr. Idoroenyi Amanam:

Very promising.  

Katherine Banwell:

If we look at care and treatment, why should a patient with myelofibrosis consider a second opinion with a specialist?  

Dr. Idoroenyi Amanam:

The field is rapidly changing, and we have very few FDA-approved therapies even in 2024 for myeloproliferative disorders and myelofibrosis. And because of some of the changes in understanding of the biology of this disease, I think that there are many patients that will benefit from physician or a center that specializes in treating patients with this very rare disorder. And I believe that   even though we have very few FDA-approved therapies, I do believe that we can give patients an opportunity to get this type of disorder under control, and actually offer curative approaches that may not be available to all facilities. 

Recent Advances in Myelofibrosis Research | Disease-Modifying Therapies

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Where is progress being made in the field of myelofibrosis? Dr. Idoroenyi Amanam discusses how disease-modifying therapies and cellular therapies are advancing patient care.

Dr. Idoroenyi Amanam is a specialist in myeloproliferative disorders and is an Assistant Professor in the Division of Leukemia at City of Hope. Learn more about Dr. Amanam.

Download Resource Guide

See More from Evolve Myelofibrosis

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Promising Advances in Myelofibrosis Research | Optimism for Patients

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Expert Perspective | A Concerted Effort to Advance Myelofibrosis Care

 Myelofibrosis Therapies in Clinical Trials | BET Inhibitors

Myelofibrosis Therapies in Clinical Trials | BET Inhibitors 

Transcript:

Katherine Banwell:

What are your areas of focus in myelofibrosis research? 

Dr. Idoroenyi Amanam:

So, I think the way that I would break it down, when you think about myelofibrosis patients, or patients with myeloproliferative disorders, patients who are diagnosed, and they’re really pretty much asymptomatic, and then you have patients who have some symptoms, then you have some patients who are very symptomatic or transitioning into a more severe disease and predominantly, that disease is acute leukemia. And so, I have an interest in trying to identify new treatments for all of these types of patients.  

Katherine Banwell:

In your opinion, what new myelofibrosis advances are most promising? 

Dr. Idoroenyi Amanam:

So, traditionally, for a lot of myeloproliferative disorders, including myelofibrosis, we had a watch and wait approach, so we typically actually did not really have very good therapies. And I think all of that changed with the approval of the first JAK inhibitor, ruxolitinib (Jakafi).  

And we have transitioned to understanding the signaling pathways that are involved in myelofibrosis and myeloproliferative disorders. And we understand certain driver mutations that are involved in these signaling pathways and involved in other areas that help drive these diseases.  

And I think what’s exciting for us right now is, we’re transitioning from having a Band-Aid approach, or a watching and wait approach, to actually having interventions that are what I would call disease-modifying drugs. And so, these drugs target some of these drivers that drive the disease.  

They target some of the inflammation that’s associated with the disease, and, in fact, they’re also targeting some of our own immune cells that may help us protect us against these diseases progressing into more aggressive disorders. 

Katherine Banwell:

How are innovations in technology accelerating myelofibrosis research?  

Dr. Idoroenyi Amanam:

You think about how we understood these diseases 20 to 30 years ago. I think we understood the clinical presentation. We understood that some patients had big spleens, we understood that those patients’ counts didn’t do so well, we understood when we would look at their marrow, how the cells looked under the microscope. And we’ve transitioned to now understanding how some of those proteins that are   in these  signaling pathways are either turned on or turned off.    

We have a better understanding of the genetics of this disease, and how it changes over time, and what that means for patients prognostically, and how they will actually respond to our current therapies.  

And obviously, it’s driving how we are setting up clinical trials and other therapies  for the future. And so, I really would say our  genetic, genomic understanding of these disorders have really opened up many opportunities for us to treat these patients better.  

Katherine Banwell:

Well, are there other research developments showing promise that patients should know about? 

Dr. Idoroenyi Amanam:

So, traditionally, we’ve thought about  these disorders as disorders where, maybe if we improved symptoms – so we give you, maybe, a pill that would help with your symptoms, or we’ll give you another medication that will help with keeping your counts under control or reducing your risk for clotting and stroke.  

And we are currently in a space where cellular therapy has exploded across all areas of oncology. We have many clinical trials that are using  therapies that  take your own cells,  or other donor cells from healthy  people, and we are giving them to patients with the hope that it will  get rid of these  bad cells that are driving myelofibrosis.  

How Can I Manage Anxiety After Follicular Lymphoma Diagnosis?

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How Can I Manage Anxiety After Follicular Lymphoma Diagnosis? from Patient Empowerment Network on Vimeo.

How can follicular lymphoma patients manage anxiety after diagnosis? Cancer patient Lisa Hatfield and expert Dr. Tycel Phillips from City of Hope discuss the experience of watch and wait and advice for coping with anxiety and being proactive in your care. 

See More from START HERE Follicular Lymphoma

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What Are the Signs It Is Time to Treat Follicular Lymphoma

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 Navigating Anxiety and Stress Following Follicular Lymphoma Treatment

Transcript:

Dr. Tycel Philllips:

It’s really about some patients are very uncomfortable being watched with an active cancer. And so, in that situation, that’s probably the biggest discrepancy we have nowadays. Because of the anxiety of the watch and wait approach. Some patients would like treatment right away, irrespective of whether they need it or not. So, you’ll sometimes get discrepancies with our patients about that.

Lisa Hatfield:

The clip you just heard was Dr. Tycel Phillips from the University of Michigan Rogel Cancer Center, who explained  how if follicular lymphoma patients are feeling anxious about being in the watch and wait period (aka not starting treatment), they may go seek a second opinion, which is perfectly fine and even encouraged by physicians.

However, even during the watch and wait period,  there are still things you can do to improve your health and well-being. Taking control of what you can control may help you feel less anxious. Here are some tips: 

  • Learn as much as you can about your diagnosis. Know the signs or symptoms that may mean it’s time to start treatment and stay up to date about the latest treatment advancements.
  • Establish a relationship with a hematologist-oncologist specializing in your diagnosis. Proactively becoming a patient under their care ensures that, if treatment becomes necessary, you’ll already have a healthcare professional familiar with your case andis  updated on the newest available treatments. This specialist does not need to be the same doctor overseeing you in watch and watch.
  • Attend all doctor appointments, even if you are feeling well. Some patients may stay stable for years before symptoms or disease progression makes treatment necessary. If you notice changes at any time, don’t wait to reach out to your healthcare team.
  • Maintain health insurance coverage, if at all possible. If you do need to begin treatment, you will need health insurance to help cover the cost. Even during watch and wait, regular appointments and testing can add up without health insurance coverage.
  • Improve your overall well-being with nutrition, exercise, and other good health practices, such as not smoking and moderating your alcohol intake. This approach positions you to tolerate treatment more effectively when the time comes, minimizing the risk of serious treatment complications.
  • Prioritize your mental health. Consider joining a support group or talk with a fellow watch and wait patient to help you work through your feelings and answer questions. If feelings of anxiety or depression begin to interfere with your daily activities, ask your healthcare team for a referral to a mental health professional.

These tips can be useful to you during the watch and wait period as they allow you to keep moving forward and be proactive!

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How Does Watch and Wait Work During Remission?

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How Does Watch and Wait Work During Remission? from Patient Empowerment Network on Vimeo.

What happens with watch and wait during remission? Cancer patient Lisa Hatfield and expert Dr. Tycel Phillips from City of Hope explain remission and what patients can expect for monitoring and appointments during periods of remission.

See More from START HERE Follicular Lymphoma

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Transcript:

Lisa Hatfield:

Once you complete initial treatment and your doctor tells you you are in remission or no further treatment is needed at this time, you may feel both happy and/or concerned about how frequently you will be seen during this remission period. Perhaps it was a relief to go to your doctors’ appointments and hear everything is looking good – or on the flip slide, you may be glad to get back to “normal” life and not have your schedule revolve around appointments. Either way, you will be seeing your doctor at regular intervals. Listen as Dr. Tycel Phillips from the University of Michigan Rogel Cancer Center explains what he does with his patients: 

Dr. Tycel Phillips:

The recommendation is really just clinical observation, meaning what I call well-being visits. Meaning I will see you in clinic at least every three months for the first year after completion of therapy. We do a system assessment, we’ll do a physical exam, we’ll do labs. Unless there is really something that at the completion of therapy that I’m concerned about, we won’t typically do any imaging.

We reserve imaging until there is a concern at some point, whether you have symptoms, there’s a lab issue, or there’s some other finding that comes up that means that we have to repeat pictures. So those visits I’ll do typically every three months for the first year, spaced out that every four months for the second year, post-treatment. And then every six months up until about year four. And then it’ll become a yearly visit thereafter, as long as you continue to remain well without symptoms and nothing on an exam that’s concerning.

Lisa Hatfield:

As Dr. Phillips says, you can expect to see your doctor every 3 months for the first year of remission  but always discuss this with your healthcare team as your hospital/treatment center may have a different cadence. The amount of follow-up depends on factors such as the treatment you have had,  how long it’s been since you completed treatment, and if you were treated as part of a clinical trial. 

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Why Communication Is So Important in Managing Follicular Lymphoma Side Effects

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Why Communication Is So Important in Managing Follicular Lymphoma Side Effects from Patient Empowerment Network on Vimeo.

How can communication help in managing follicular lymphoma side effects? Cancer patient Lisa Hatfield and expert Dr. Tycel Phillips from City of Hope share advice and benefits of open communication about side effects.

See More from START HERE Follicular Lymphoma

Related Resources:

How Does Watch and Wait Work During Remission

 Relapsed and Refractory Follicular Lymphoma _ What Is It

 What Are Potential Comorbidities in Follicular Lymphoma

Transcript:

Lisa Hatfield:

Though doctors can observe some patient information in blood tests and other lab work, they  also must hear from their patients. Patients are the ones who know how you’re feeling, and this is why it’s vital for you to communicate with your doctor about any symptoms and side effects that you experience. Treatment can often be adjusted to minimize symptoms and side effects to provide patients with optimal quality of life while fighting your cancer. Listen as Dr. Tycel Phillips discusses further.

Dr. Tycel Phillips:

For the most part, there are logical next steps that we can implement to either eliminate the side effects or hopefully prevent them from future treatment regimens. And also, other concerns that you may have. I mean, you only get one life. And this is your body. 

I try to explain to my patients, “I don’t want you to wait until the next visit if you have issues.” I mean, we need to sort of manage these in real time. Even things we don’t take care of right then and there, again, it gives us a heads up and a head start to try to take care of these problems the next time you come to the clinic.

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

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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.

See More from Empowering Providers to Empower Patients (EPEP)

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 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

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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.

Descargar Guía|Download Guide 

See More From [ACT]IVATED MPN

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Have MPN Disparities Been Addressed by Institutions?

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Graft-Versus-Host Disease Risk for BIPOC Patients

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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

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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.

Descargar Guía|Download Guide 

See More From [ACT]IVATED MPN

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Have MPN Disparities Been Addressed by Institutions?

Have MPN Disparities Been Addressed by Institutions?

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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

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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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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?

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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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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

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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

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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?

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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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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?

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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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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

 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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