Tag Archive for: blood clots

Are MPN Risks and Outcomes Impacted by Race or Ethnicity?

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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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See More From [ACT]IVATED MPN

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

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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.”

Descargar Guía|Download Guide 

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?

 What Does the Future of Myeloproliferative Neoplasm Care Look Like?

What Does the Future of Myeloproliferative Neoplasm Care Look Like?

 Are There Disparities in Stem Cell Transplant Outcomes

Are There Disparities in Stem Cell Transplant Outcomes?

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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How Is MPN Treatment Effectiveness Monitored?

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How Is MPN Treatment Effectiveness Monitored? from Patient Empowerment Network on Vimeo.

How is the effectiveness of MPN treatment determined? Dr. Naveen Pemmaraju describes key factors to monitor treatment effectiveness to ensure optimal patient care and to determine when it may be time to consider a change in therapy.

Dr. Naveen Pemmaraju is Director of the Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN) Program in the Department of Leukemia at The University of Texas MD Anderson Cancer Center. Learn more about Dr. Pemmaraju, here.

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 COVID-19 Vaccination: What Do Myelofibrosis Patients Need to Know

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Transcript

Katherine Banwell:

Once on therapy, how is the disease monitored and how do you know if the treatment is working?

Dr. Pemmaraju:         

So, it differs from each disease, but let’s take polycythemia vera for a good example. So, let’s suppose you have polycythemia vera. I think there’s three markers here that you can check. One is the blood counts, right?

So, you want to make sure that the blood counts are controlled. New England Journal, five or six years ago now, our Italian colleagues published a very seminal paper which shows that the goal of therapy should be that the hematocrit should be below 45. So, that’s actually a very nice number to have. So, not just waiting for symptoms of the disease but keep the number low. And if you do that, that correlates with decreased cardiac events, thromboembolic events.

Number two, I think that, besides the blood count, the spleen. The spleen and liver size also is a nice surrogate for how the disease is doing. So, if that’s enlarging or getting out of control, that may be time to stop what you’re doing, reassess. The disease may be progressing to myelofibrosis, for example.

And then I think, lastly, the absence of stuff actually helps, too. So, the absence of major bleeding, the absence of blood clots, the absence of transformation to MF. I think if the quality of life is good, you’re decreasing blood clots and bleeding, you’re not going to a more advanced disease state, these are all wins for us with P vera.

Katherine Banwell:    

You touched on this briefly, but I’m wondering when a patient should consider changing treatments.

Dr. Pemmaraju:      

Yeah, changing treatments is more art than science, I would say. So, it does – that’s one of those that is kind of specific from patient to patient. In general, what we just talked about gives you that guidance. So, in polycythemia vera, since we brought that up earlier, uncontrolled blood counts despite maximum medication intervention, the phlebotomy requirement being untoward and impossible to keep up with, the spleen size growing out of control, the quality of life being impossible – these are some aspects to look into changing therapy and/or clinical trial.

But remember, it’s not a one-size-fits-all, right? So, some patients, the counts – some of these things may or may not actually play out. So, it has to be more of a gestalt, more of a total picture there.

What Information Is There for Those Hesitant About COVID-19 Vaccines?

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What Information Is There for Those Hesitant About COVID-19 Vaccines? from Patient Empowerment Network on Vimeo.

For those cancer patients who have COVID-19 vaccine hesitancy, what information is there about vaccine development? Expert Dr. Shaji Kumar shares details about development and clinical trials of the COVID-19 vaccines – and the reasons why testing could be carried out at a rapid rate compared to other vaccines.

See More From the Best Care No Matter Where You Live Program

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Transcript:

Mary Leer:

Can you speak to those who might be hesitant about the speed of vaccine development around COVID. I’ve heard this often from other people saying, “Well, they develop this so quickly, how can we trust it?”

Dr. Shaji Kumar:

I think those concerns are quite valid, I think vaccines have always been a very controversial topic and not just COVID vaccination but even for childhood vaccinations. There have been long-standing concerns that some of those vaccinations may be responsible for some of the issues that we see in the children and even in the late adulthood. I think what we really want to get across is, again, taking that question apart, and there are multiple different aspects to it, one is the whole concept of how we created the vaccine so quickly, we kept telling everyone from the time that it started that it takes five to 10 years to develop a good vaccine, and now we have something in a year, so obviously that raises concerns amongst people. I think it’s just a testament to how far technology has come. In the past, we had to isolate the protein and use that protein to develop the immune response, and what has been really unique about the COVID situation has been the Pfizer vaccine and the Moderna vaccine, both of which uses a new technology called the mRNA-based technology. And this is something that has been developed over the past decade to decade-and-a-half, and I would say this is a platform that was perfect, just waiting for the right opportunity to come along.

And the COVID situation really presented that. And even though it was the speed with which this was developed, is just because the technology has come along so much and we can actually do that, and the second is how fast the clinical trials have been done, and I think that speaks to, again, the infrastructure that they have been developed over the years to rapidly develop and implement a clinical trial. So the clinical trials, both Pfizer and Moderna trials had 40 to 50,000 people enrolled in a quick phase and the community transmission that was happening at a very high rate. We could get these trials done in a very rapid manner, so the patients or the people who enrolled in this clinical trial the fact that they were not getting infected could be determined in a much, much faster fashion than what you would have done in the past with any of the other vaccines. So I think the technology is robust. The [COVID] trials are very well-conducted and the end point in terms of efficacy has been very well-determined or very accurately determined. And given the size of these trials and the number of people who have been a goal, I think we can feel fairly confident that the risk associated with this vaccine is pretty low, so you can argue that one of the risk of a particular side effect is only 1 in 80,000. So maybe to the 40,000 people enroll in the trial, they may not have adequate numbers of that and that was certainly a concern when they started vaccinating. And we just know a couple of days ago, there was a publication that looked at almost like 63 million vaccine doses that have been given, and overall the risk of vaccine related side effects have been very, very minimal.

But on the other hand, we all heard about what would happen with some of those vaccines and the blood clots, and I think that even though…yes, it is, as it is a risk. It is a very, very small risk. And the fact that you were able to identify them right away again, I think tells us that should there be rare side effects, you’re going to find it, and we are going to figure out the mechanics of why those side effects happen. And we’re going to figure out how to avoid those things.

So, I think the information flow is so fast and all the data related to vaccines and the side effects are being captured in a real-time fashion that you’d immediately be aware of side effects should that happen.