Tag Archive for: African American

What Experts Are Learning About the Hereditary Risk of Myeloma

What Experts Are Learning About the Hereditary Risk of Myeloma from Patient Empowerment Network on Vimeo.

Myeloma experts Dr. Irene Ghobrial and Dr. Betsy O’Donnell share research updates on predicting the risk of developing myeloma, both from inherited genetics as well as environmental factors.

Dr. Irene Ghobrial is Director of the Clinical Investigator Research Program at Dana-Farber Cancer Institute and Professor of Medicine at Harvard Medical School. Learn more about Dr. Ghobrial.

Dr. Betsy O’Donnell is Assistant Professor of Medicine at the Dana-Farber Cancer Institute specializing in Plasma Cell Disorders.

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Katherine Banwell:

Is there any research on predicting hereditary risk of myeloma? 

Dr. Irene Ghobrial:

Yes, so part of the PROMISE study is trying to understand what is the risk of developing myeloma? So, we’re recruiting people who are either African American, because they have a three times higher chance of developing myeloma compared to the white population, as well as people who have a first degree family member with a plasma cell disorder. 

Or even any blood cancer because now we see that CLL and lymphoma and myeloma can actually come together. And we’re now doing something called whole genome sequencing of all of the DNA that you inherit from Mom or Dad called the germ line. Basically, we try to see did you inherit the gene from Mom or Dad that increases your risk to myeloma? 

Now, it’s not as high as something like BRCA1 mutation or 2 mutation, where if you have that, you’re high, high chance of developing breast cancer or ovarian cancer and so on. We probably have several factors that need to be put together. You inherit something and then the environment adds something, and then as we get older, we get the hit. 

Or you inherit something that changes your immune system, and that allows the plasma cells to start proliferating faster because they are reacting as an immune cell, and that allows the hit of myeloma to happen. And we’re working on that, and we would really encourage everyone who has a relative with myeloma, sign up on PROMISE study. 

Because that’s how we can get the answer. That’s how we can say it’s not because you are an African American or you’re white. It’s not because you have a first-degree family member or not. It’s because of this gene. So, taking away race, taking away all of those factors, taking away age and trying to go back to the biology. Is it a certain gene, is it the certain immune cell that makes us go to that risk? 

And then Dr. O’Donnell is really taking it to the next level. Now what is in the macro environment? So, we talked about what we inherit, but it’s like nurture and nature, right? So, nature is the genetics and then nurture, what do we eat? What do we change? Obesity, health, all of those things change our inflammation level and change our ability to basically prevent those myeloma cells from starting or from continuing to progress. And she can potentially talk about her work on microbiome, on the tiny bacteria that are in our body from what we eat. So, maybe, Betsy? 

Katherine Banwell:


Dr. Betsy O’Donnell:

Absolutely. Yes, so one of the things that particularly interests me is the effect of lifestyle on our risk of getting cancer. 

And specifically within plasma cell disorders, and I think there have been other cancers, breast cancer and colon cancer, where they’re a couple steps ahead of us just in understanding the influence of things like obesity and the gut microbiome. So, the specific bacteria that are within your intestinal tract. It makes a lot of sense in colon cancer, but we think that that’s not limited to diseases like that. We actually think that these microbiomes, which are influenced by the foods that you eat, may have a relationship with your immune system. And remember, myeloma is a cancer of the immune system. 

So, we’re all working together on our team here on a very scientific level to understand lifestyle influences and how they may cause or potentiate multiple myeloma. And so we’re excited to kind of bring this piece together. When you think about the spectrum of plasma cell disorders, not everybody goes on to myeloma, but a lot of people sit in these early precursor diseases, MGUS and early smoldering.  

And so are there things that people can do for themselves that might influence their gut microbiome, or if it’s the amount of body fat that we have that’s very involved in cell signaling? Can we modify those things, exercise more potentially, that will decrease our body inflammation levels or alter those pathways that have been set in process that, by altering them, may decrease the risk of going on to more advanced plasma cell disorders? 

Katherine Banwell:

That’s such great information.  

Why Is Multiple Myeloma Nearly Twice As Common in BIPOC Communities?

Why Is Multiple Myeloma Nearly Twice As Common in BIPOC Communities? from Patient Empowerment Network on Vimeo

Why does multiple myeloma impact some BIPOC communities nearly twice as often compared to white Americans? Expert Dr. Joseph Mikhael shares factors that affect diagnosis and treatment of African American and Hispanic American patients — and how to improve health outcomes for BIPOC myeloma patients.

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Dr. Joseph Mikhael:

Almost twice as common in the African American population, it’s diagnosed younger, and the African American population is actually also diagnosed younger in the Hispanic population. And then even though we tell myeloma is having this amazing survival advantage over the last decade, which is true, that advantage has not been seen in the African American population as much as we have seen in the Caucasian population, similarly not as much in the Hispanic population as well. So those are the key highlights. When people have access to those treatments, when there is that kind of equity, we actually see the outcomes, if not the same, are actually better for African American patients. So it highlights, what I often call the three T’s that are not accessed as well in the African American population, triplets, transplant, and trials. So those are some of the key things I like to say. And then when we talk about how we correct this.

I think there was a question about how are we going to do it, that could be a 20-minute answer, but it’s not just a function of having more transplants, triplets, or trials, it is really engaging the community to change this course of my alumni really is an issue of trust and of long-term strategies that engage people in a way that resonates with them, to be able to trust their institution in their hospital or their physician or within their community.

Number one, we know even from studies that we’ve done in Africa and gone on in other countries that, for reasons we don’t really understand the disease is twice as common from its early stage from MGUS right through to myeloma. It’s not an environmental factor, it’s not a later acquired phenomenon, so the baseline risk is significantly higher. But that’s secondly experiencing myeloma, having it has a lot to do with the whole experience that patients have with myeloma from diagnosis through treatment. And we know that, unfortunately, along the way, there’s a significantly longer time to diagnosis, in the African American population which has multiple reasons. Some of it is a lack of understanding, a lack of trust, a lack of education in the physician community. As part of one, the big projects that I’m working on later this year is to educate primary care doctors in primarily African American communities, so that when that man comes in with symptoms that I think of myeloma, they think of diabetes, diabetes, diabetes.

And I want them to think diabetes, diabetes, myeloma. I want it to be added to that differential diagnosis, so it’s a multi-headed beast for the diagnosis. But also as I mentioned before, access and so on all the way through, so it’s a complex problem. We do know that certain side genetic features are more common in African Americans, namely what’s called the translocation t(11;14), which with the right treatment actually can have a better outcome. So it tells us that there is a goal line that we can reach, that can actually get superior outcomes, and yet we’re now in inferior outcomes.

Should Prostate Cancer Screening Happen at an Earlier Age for Certain Patient Populations?

Should Prostate Cancer Screening Happen at an Earlier Age for Certain Patient Populations? from Patient Empowerment Network on Vimeo

Should prostate cancer screening be done sooner for some men? Expert Dr. Leanne Burnham details screening guidelines from the American Cancer Society and the U.S. Preventive Services Task Force, how guidelines differ for Black men, and when to advocate for earlier screening.

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Dr. Leanne Burnham

In terms of prostate cancer screening, the current recommendation by the U.S. Preventive Services Task Force is that men between the ages of 55 to 69 have a discussion with their physician about whether or not they should be screened. Okay, now the U.S. Preventive Services Task Force base this decision on studies, as I mentioned earlier, in predominantly white men, if you look at American Cancer Society, the recommendation is that African American men are screened at age 45 and African American men who are 40, but have a family history of prostate cancer should be screened at age 40. So the issue is most physicians follow the U.S. Preventive Services Task Force recommendation for white men. And so, if you have a family history, or if you’re just 45 and you want to know, do you have prostate cancer, you have the right to ask your physician and let them know. Show them on your phone, American Cancer Society recommends this for me because of my race, because of my family history, and your insurance will cover that. Now, these recommendations for Black men in their 40s are not just for no reason, it’s because we see prostate cancer in men at this age, like I said before, my dad being diagnosed at 50 with a PSA score of 64 means that he was growing prostate cancer in his 40s, and who knows how early in his 40s if that was happening. At City of Hope, we provide free prostate cancer screening in the community, and there’s thousands of men that are eligible to be screened, and what we see is there are men in their 40s that have elevated PSA, and if we can catch that early enough, that’s a game changer for them in terms of the length of their life and the quality of their life that they’ll have moving forward.

So, one thing that we see in the community, and I talk to a lot of men about, is not even just men, people in general, trust their doctor, right, they trust to speak to their physician. If the physician says, “It’s your annual visit, you need to have A, B, and C done.” A lot of the men, they’ll say, “Oh, I went to the doctor, I had everything done,” and we really have to let them know your doctor may not have included that with everything else. Yes, you’ve got your blood pressure checked, your blood sugar, and they checked your weight and all this, but go through your record, and a lot of these records are electronically available in apps now and see. Just look at your app and see, did they test for PSA? And if they didn’t and you’re 45 and you’re African American or you’re 40 and you have family members, then that’s something you can shoot your doctor an email and request and just say, “You know, I’m concerned about this, and I would really like to have this test done based on American Cancer Society’s recommendations.” And what we see a lot of times too in the community, is men will say, “Well, I feel fine.”

Well, what you need to understand about prostate cancer is, men do not have symptoms unfortunately until it is beyond early stages is how it works, and so as men get older, the prostate enlarges, whether or not they have prostate cancer or not, and it causes a frequency in urination especially at nighttime. So, if you have a frequency in urination, it will occur as you get older, that’s something you need to let your doctor know. It may not be prostate cancer, so don’t freak out, but it very well may be other symptoms as prostate cancer progresses include back pain, sometimes sexual dysfunction, things like that start to occur, and back pain can be anything. So that’s why it’s important to get your PSA tested even if you don’t have symptoms, because I can tell you that, my dad did not have any symptoms with a PSA of 64, and the only reason I found that was on accident in an emergency room, he went to the ER after having a colonoscopy. And my dad never got sick for anything that he didn’t even understand what physical discomfort means, and he had a colonoscopy, and you know, when you get a colonoscopy, they tell you afterwards, you may have some gas pain, he never had gas pain. So, he didn’t know when his stomach was hurting so bad afterwards, he just thought, this is not okay, this is not okay, he goes to emergency room, they say, Listen, sir, it’s just gas from your colonoscopy, by the way, we ran your blood work, your PSA is extremely elevated. He found out on accident. Who knows how much longer that would have been growing after that, and so I say all that to say, do not expect, do not wait for symptoms to come, and that Black men do get prostate cancer young and that you wanna catch it early because then you have a 100 percent cure rate when you catch it early, so it just makes the most sense to stay on top of it.

How Will Telemedicine Impact Prostate Cancer Clinical Trials?

How Will Telemedicine Impact Prostate Cancer Clinical Trials? from Patient Empowerment Network on Vimeo

How will prostate cancer clinical trials be changed by the addition of telemedicine to the treatment toolbox? Expert Dr. Leanne Burnham details patients who can benefit from telemedicine visits — and explains some of the history of discrimination in medical care for BIPOC patients and treatment response of African American men with prostate cancer

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Dr. Leanne Burnham

So clinical trials, the whole concept of clinical trials has really come to the forefront of the media right now with everything that’s happened in 2020 and currently with COVID.

And so a lot of people, if they were not aware of discrimination in medical care or clinical trials in the history of the U.S., then now they’re starting to become well-versed in it. So now people are hearing, “Oh, Tuskegee syphilis experiment,” where those of us who are in science, in medicine study health series research is, this is not new to us, so we’re grateful that it’s coming to the forefront. People are learning about it, but there is a justifiable medical mistrust by many Black and Brown people, but African Americans in particular, because of what has been done and not done in terms of medical treatment in the past 400 years. And so, because of this medical mistrust, that leads to sometimes a hesitancy to participate in clinical trials, because there’s an idea of, I don’t want to be a guinea pig, so that’s just one aspect that leads to less enrollment in clinical trials. There’s the whole other side of things, right? There’s the fact that a lot of African American patients are not asked to be in a clinical trial, they’re not explained what the clinical trial entails, a lot of people don’t realize that clinical trial patients have access to what I call what I consider to be VIP access to what is cutting-edge, and it doesn’t mean that it’s not new, that it hasn’t been tested extensively. It’s just now that it’s available to a patient at a particular disease stage that we might be looking at, and we have a lot of reason to believe that it will help that patient.

So a patient that’s enrolling in a clinical trial has access to the VIP treatment. And then as an added bonus, they actually have extra engagement with providers, extra touchpoints with their providers that patients that are receiving standard of care and not enrolled in a clinical trial don’t have as much access to. That being said, in addition to that, for us to really forward medicine in what we call precision medicine, which is able to have medication that’s tailored to an individual person based on their DNA makeup, based on how their body would individually respond to a drug. It’s super important, highly important that we have diversity in patients that are enrolled in clinical trials. For example, if you don’t have enough African American men enrolled in the clinical trial for prostate cancer, then you don’t really know if that medication would work worse or even better in that patient. And what we’re actually seeing is there has been a development of race-stratified clinical trials in the past less than 10 years, really around five years, where we’ve looked at chemotherapy, we looked at hormone therapy, and we looked at immunotherapy, where we include enough African American men in the trials, and we look at how the drug responds in African American men versus other men. And we see that African American men actually have a better treatment response than other races, so how amazing is that? Where you have a demographic that is more likely to get aggressive prostate cancer and die much younger, and we’re seeing that if they’re given the new treatments that are really tailored to target the disease in ways that we weren’t able to do it before, that they’re responding better and having longer survival and better outcomes. And so it’s really important for all those reasons I described to increase African American participation in clinical trials.

Now, I say all that to get to this point, which is, enrollment is not easy when you don’t live near a clinical trial center or a hospital that’s offering whatever treatment you’re interested in trying out as part of a trial. And so we know that race in this country is tied to geographic location, it’s tied to socio-economic status, and so what telemedicine provides is in previous instances where maybe a patient lives out the way 60 miles or more from an institution that has a clinical trial that they would want to be involved in, now they don’t have to drive to that center. They can have a telemedicine visit, they can conduct labs where they’re at near their home, see if they qualify to participate in the clinical trial based on their own body’s physiology and how their blood work comes out and how their imaging comes out, see if they qualify. And then they can enroll in that clinical trial, and so telemedicine in that aspect really opens the door to people who may have been interested who live out of the way, maybe even in a rural setting where the institutions that they have nearby, don’t have what they are interested in using or what may be best for their treatment plan personally, and so telemedicine opens a whole new world to patients such as those.

AML Research Updates: News From ASH 2020

AML Research Updates: News from ASH 2020 from Patient Empowerment Network on Vimeo.

AML expert Dr. Jeffrey Lancet shares the latest news from the 2020 American Society of Hematology (ASH) annual meeting. Dr. Lancet sheds light on headlines from the meeting including FLT3 inhibitor research, combination therapies with venetoclax, a promising inhibitor therapy, and shares his optimism about the future of AML treatment.

Dr. Jeffrey Lancet is Chair and Program Lead in the Department of Malignant Hematology at Moffitt Cancer Center in Tampa, FL. He is nationally and internationally recognized for his clinical research in the field of acute leukemias. Learn more about Dr. Lancet, here.

Download Program Resource Guide

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Hello, and welcome. I’m Katherine Banwell. Today we’ll discuss the latest news from ASH 2020 and how AML patients can advocate for personalized care. Joining me is Dr. Jeffrey Lancet. Welcome. Would you please introduce yourself?

Dr. Lancet:                   

Hi, sure. My name is Dr. Jeff Lancet. I’m at the Moffitt Cancer Center in Tampa, Florida, where I am the Chair of the Malignant Hematology Department. We spend a lot of time treating patients and conducting clinical trials of Acute Myelogenous Leukemia.


Okay. Thank you. Dr. Lancet, the American Society of Hematology Annual Meeting just closed. What are the AML headlines from this year’s meeting?

Dr. Lancet:                   

Yeah, so as usual, AML was a very busy area for clinical presentations this year at the ASH meeting focusing largely on novel and targeted therapies.

I don’t believe that there were many practice changing developments per se, but rather discussions about many promising therapeutic strategies that are still under development and moving forward rapidly largely in the areas of targeted therapy, low intensity therapy, measurable residual disease and things of that nature.


What does this research news mean for patients?

Dr. Lancet:                   

Well, I think that there’s a lot to be encouraged about and maybe I’ll take the time to review some of the highlights in what was presented with respect to some of the novel therapeutic approaches that many of our patients can look forward to receiving in the not too distant future.

So, we often talk about you know, targeted therapies and, of course, one of the major targets over the years has been that of mutated FLT3 which is one of the most common mutations in AML.

And at this meeting we saw several presentations on clinical trials resolved to utilizing inhibitors of FLT3, with some emphasis on the most recently approved second generation drug called gilteritinib.

There were I thought three major presentations focusing on gilteritinib and one was an update on a randomized Phase III trial comparing gilteritinib plus azacitidine versus azacitidine alone in newly diagnosed unfit for induction chemotherapy patients with FLT3 mutations, preliminarily showing good tolerability and high composite complete response rates in the combination on.

There was another trial of gilteritinib plus venetoclax in relapsed and refractory FLT3 mutated AML.

And what was interesting was that a very high percentage of patients achieved response with this combination of gilteritinib plus venetoclax, many of whom were heavily pretreated previously and many of whom had also gotten prior FLT3 inhibitor therapy during an early stage of the disease. So, the combination of gilteritinib and venetoclax and this more refractive study, it was encouraging to see these promising responses.

And then we saw some data reporting the effects of gilteritinib in combination with more traditional chemotherapy induction with a couple of studies demonstrating both a high complete response rates as well as high rates of mutation clearance of the FLT3 mutation.

So, those were very encouraging data that were presented with respect to the FLT3 mutated AML population.      

So, another very important drug that reached the marketplace for AML recently is a drug called venetoclax, which is an inhibitor of a protein called BCL2.

And this drug was recently FDA approved for use in combination with low intensity chemotherapy drugs such as azacitidine or decitabine.

And it seems as though the combination of venetoclax plus one of these hypomethylating agent drugs, azacitidine or decitabine has resulted in very, very strong efficacy signals as recently published in a New England Journal of Medicine paper that reported on the results of the Phase III trial of venetoclax plus azacitidine.

So, that has now become standard of care for older less fit adults with newly diagnosed AML; the combination of venetoclax plus a hypomethylating agent such as azacitidine.

And naturally, there’s been interest in really kind of taking it several steps further to advance the role of these combinations and to also look at additional drugs in combination with venetoclax plus hypomethylating agent therapy.

So, we saw some of that at the ASH meeting this year. One approach would be to take venetoclax and then to combine it with more intensive chemotherapy for perhaps more fit patients or younger patients that could undergo a more intensive program.

So, we saw presentations of venetoclax being combined with a drug called CPX-351, which is a novel liposome formulation of two common chemotherapy drugs that had been approved a few years ago for secondary AML. And we also saw a combination strategy with venetoclax, and a regimen known as FLAG-IDA, which is a commonly used induction regimen in acute myeloid leukemia.

And I think it’s important to recognize that although these trials that combine the venetoclax with more intensive chemotherapy showed signs of good efficacy with good response rates, there were definitely signals of increased toxicity, hematologic toxicity primarily, which is not completely unexpected with venetoclax knowing that it can cause significant lowering of white blood cells and platelets and hemoglobin.

And then finally, there is a lot of interest in, you know, doing these types of combinations with venetoclax in different subsets of AML and one subset of AML that has been very important recently is that of the IDH mutated AML population of patients.

IDH is a fairly common mutation that occurs either in the Isoform of IDH1 or IDH2 and there’s about a 15 to 20 percent incidence of IDH mutations in AML.

Now we do have an inhibitor for both of these types of mutations: ivosidenib for IDH1 and enasidenib for IDH2, but there also appears to be a strong role for venetoclax plus azacitidine in IDH mutated AML.

We saw from a series of patients presented by a physician at MD Anderson looking at outcomes with venetoclax plus azacitidine in IDH mutated AML. And the response rates were very high when you give HMA plus venetoclax to these patients with IDH mutated AML.

But I think more importantly was that there were what we call high intro patient response rates when switching between venetoclax and HMA therapy with an IDH inhibitor containing regimen.

In other words, a patient would have a good chance of responding to the initial therapy and then if or when that therapy stops working, having a good effect from a salvage therapy with the other regimen. So, when you see initially azacitidine plus venetoclax and then had a relapse, the IDH inhibitors worked well and vice versa if you had received an IDH inhibitor and then subsequently received HMA-venetoclax at a later time point that also worked well.

So, it’s encouraging to see that you can potentially sequence these drugs and get continued responses along the way and ultimately we think will help a survivor and keep patients in a better state of health even longer.               

So, I just wanted to take a few minutes also and discuss some of the newer more novel therapies that are really hitting or approaching the landscape right now. One of these is called CC486, also known as oral azacitidine or ONUREG. And this drug was shown in recent literature to prolong overall survival in patients who are in first remission from their AML who had received induction chemotherapy.

So, this drug was used as maintenance therapy after a variable number of consolidation regimens. And people who got this ONUREG or oral azacitidine drug as maintenance therapy, it resulted in longer survival compared to those who had received placebo.

And this was presented at last year’s ASH meeting, but this year’s ASH meeting provided an update, a very important update, showing that the overall survival advantage from this drug, this oral azacitidine drug, when used as maintenance was independent of whether a patient had measurable residual disease at the time that they went onto the maintenance therapy.

In other words, whether you had MRD, measurable residual disease or not at the time of the study entry, your responses were still more favorable, your outcomes were more favorable, if you received this oral azacitidine drug.

So, this was FDA approved earlier this year for patients in the maintenance phase of therapy for AML who had gotten prior reduction chemotherapy.

And importantly, this drug was also shown to be able to convert about 25% of patients who were positive for measurable residual disease; convert them from positive to negative. So, even though they were in remission, they had measurable residual disease and this drug in about 25 percent of the cases converted that from positive to negative. So, that’s a very important finding as well.

Another important drug that I think you should keep your eye on is a drug called magrolimab. This is an antibody against a certain type of protein that is present on the immune system cell called the macrophage, and when this magrolimab drug was combined with azacitidine in a recent clinical trial, it was demonstrated very high response rates of over 65 percent.

And, in particular, in patients with P53 mutations, which is a very bad mutation to have in most cancers, including AML, in patients with this high-risk mutation, the combination of magrolimab with azacitidine appears to be effective based upon the early data that we have with high response rates.

And then finally, I just wanted to make mention of another important area in, not really just AML, but in all cancer and that’s  outcomes disparities between different races and ethnic groups. And we saw a very important presentation at the plenary session this year where the authors reported outcomes amongst younger patients with AML who were African American compared with Caucasian.

And the data clearly indicated a worse overall survival amongst Black patients compared with white patients under age 60. And this included patients who were enrolled in clinical trials. So, that it appeared that African American patients have a worse outcome than Caucasian patients with acute myeloid leukemia highlighting the need to better understand various risk factors and other factors that play into these disparate outcomes between our Black American population and a white American population, which I think could shed light on additional disease characteristics that may help everybody as well.