Tag Archive for: Acute Myeloid Leukemia

Blood Cancer Awareness Month 2022

July 2022 Notable News

July brings important advances in cancer research that can lead to better patient outcomes. Research has shown that adult cancer survivors have an increased risk in developing heart disease and heart related complications. More studies are needed to determine why black leukemia patients are having worse outcomes than white leukemia patients of the same age. A portable screening test is bringing early diagnosis of cervical cancer for women in lower income and more isolated areas.

Adult Cancer Survivors have Higher Risk of Cardiovascular Disease Than Those Without Cancer, Study Shows

Adult survivors of cancer have a higher risk of heart failure and other cardiovascular diseases (CVD) later in life than adults without cancer, according to results of a large study led by Johns Hopkins Medicine researchers reports MedicalXpress.com. Cancer patients that have used treatments such as chemotherapy and radiation to the chest area are at a higher risk because of the damage it causes to the heart. These patients have an increased risk for heart failure and stroke. With the advances in treatment, cancer patients are living longer which makes it more likely to have heart disease. The causes of this damage are oxidative stress, inflammation, and cardiac toxicity from treatments, on top of the regular risk factors of high blood pressure, diabetes, and obesity. It is important to teach prevention of heart disease to cancer patients due to their increase risks. Find more information here.

Black Leukemia Patients Have Higher Risk of Death Than White Counterparts

The new study, which looked at outcomes or patients with acute myeloid leukemia (AML), highlights an urgent need to understand racial and ethnic differences, as well as the inequities in diagnosis, treatment and care between Black and White patients reports UPInews.com. AML is a rapidly progressing cancer that requires treatment immediately upon diagnosis, making the findings of this research even more important. Black people with this cancer have and increased rate of early death and a lower rate of long-term survivability than white cancer patients of the same age. Black cancer patients are underrepresented in clinical trials and research, studies have been primarily focused on people of European descent. Treatment delays and providing lower quality of care also play a role in these results. More research with a more diverse study group is urgently needed to improve patient outcomes. Find more information here.

Easier, Early Cervical Cancer Testing to Save Lives

Prevention and the HPV vaccine is helping to reduce the numbers of women dying with cervical cancer, but new portable screening kits and new types of lab tests will improve diagnosis and earlier treatment of the disease reports MedicalXpress.com. Cervical cancer is the fourth common cause of cancer for women, and it is highly treatable if diagnosed early. Most deaths occur in women from lower income countries that have limited screening available, there can be delays getting results and delays to treatment. If a woman is diagnosed in an advanced stage of cancer, time makes a big difference in survivability. Scientists have developed a portable screening kit called Elevate. This kit requires little training and women can collect it themselves, the results are returned in one day. The kit uses DNA to look for HPV, the virus that can cause cervical cancer. Elevate is being used in isolated areas where medical care is difficult to get to, as well as for women that are too busy to get the care they need. Find more information here.

Introducing Art Flatau, AML Empowerment Lead

I have decided to try my hand at writing a regular blog.  I hope to write a post every month or so. This first post is something of an introduction.  You can read more of my background on my PEN Empowerment Lead page. I suppose I should mention that I am not a medical doctor and am not giving medical advice. I have in the past written a very occasional blog, largely summarizing conferences or meetings I have attended (Art Flatau’s Blog on Leukemia). My plan is to mostly write about new advances in AML treatment and stem cell transplants (including other cellular therapy like CAR T-cell).  However, I also want to write some about my own experience, particularly dealing with late effects. 

I am an AML and bone marrow transplant survivor. My interests are in new advances in AML treatment including stem cell transplants. As a long-term survivor (the 29th anniversary of my transplant was last month, February 2022) I am also interested in late effects. I have a few ideas currently on subjects I would like to explore further, including: 

Let me know if you have topics that you are interested in. I cannot promise to write about them there are lots of interesting topics in this area that I know little about. 

Updates from ASH: How Biomarker Testing Has Changed MPN Care

Updates from ASH: How Biomarker Testing Has Changed MPN Care from Patient Empowerment Network on Vimeo.

MPN specialist, Dr. Andrew Kuykendall, discusses how the identification of specific biomarkers in myeloproliferative neoplasms (MPNs), such as the JAK2 mutation, have moved research forward. Dr. Kuykendall shares promising findings that were released at the 2021 American Society of Hematology (ASH) annual meeting and how this may impact MPN care in the future.

Dr. Andrew Kuykendall is an Assistant Member at Moffitt Cancer Center in the Department of Malignant Hematology. Dr. Kuykendall’s clinical and research efforts focus on myeloproliferative neoplasms (MPNs), MDS/MPN overlap syndromes and systemic mastocytosis (SM). Learn more about Dr. Kuykendall, here.

See More from INSIST! MPNs

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The Latest in MPN Research: Updates from ASH 2021

Which Gene Mutations Impact Myelofibrosis Treatment Options?

Which Gene Mutations Impact Myelofibrosis Treatment Options?

Which Tests Do You Need Following an MPN Diagnosis

Which Tests Do You Need Following an MPN Diagnosis? 


Transcript

Katherine:

How has molecular or biomarker testing changed the field of MPN care and treatment?

Dr. Kuykendall:

Well, I think, first and foremost just understanding – going back to 2005 and knowing that we have JAK2 mutations. I think that gave really a lot of clarity to the diagnosis and really understanding the biology of how the disease acted through the JAK-STAT pathway. And certainly, that led to the understanding of MPL mutations and then calreticulin mutations.

We’re still figuring out exactly how calreticulin mutations work. There was a great abstract, a preclinical abstract, this year talking about the impact of interferon on calreticulin mutations and how that may differ from what we see in the impact of interferon on diseases that are driven by JAK2 mutations.

Clinically, we see a little bit of difference in how those diseases respond and we may understand a little bit better about why that happens. Additionally, that’s kind of gone down to looking at these big next generation sequencing panels where we identify high-risk mutations and that can certainly change our understanding of the prognosis of these diseases.

We’re starting to get, at least in the AML world, we’re getting targeted agents that can potentially target some of these mutations such as IDH1 and IDH2 mutations that have specific inhibitors.

Those are mutations that occur in myeloproliferative neoplasm patients and convey a worse prognosis, so there are ongoing trials looking to see if we can use those IDH inhibitors in myeloproliferative neoplasms either in the chronic phase or maybe in the more accelerated advanced phase.

You know the big thing, this meeting, was actually looking at polycythemia vera patients and what’s the relevance of the JAK2 mutant allele burden. I think this is something we’ve talked about a lot as far as how significant this is. We know in chronic phase myeloproliferative neoplasms that that JAK2 mutation tends to be associated with more thrombotic complications.

There are more blood clots in the veins and the arteries. There were a couple great abstracts that looked at the really the implications of the JAK2 mutation and the fact that it is associated with more thrombosis, but maybe more venous thrombosis. That might be a big risk factor for venous thrombosis and it may be that cardiovascular risk factors, such as diabetes, hyperlipidemia that’s really what’s driving the arteriole thrombosis. It also looked at the variant allele fraction, the number of cells that have that JAK2 mutation.

One abstract showed that if you have over a 50 percent allele fraction, if more than 50 percent of the alleles have the mutation – a higher burden of that mutation that’s associated with an increased thrombotic risk even in low-risk polycythemia vera patients. Whether or not that’s enough evidence to really change the paradigm of how we treat low-risk patients is to be determined, but I think very interesting and provocative work. 

Care Partner Profile: Mike Crocker

The first time Mike Crocker became a care partner was in 2016 when his wife Dr. Gerri Smoluk was diagnosed with Acute Myeloid Leukemia (AML). The second time was in 2020 when, after being in remission for four years, Gerri was diagnosed with leukemia again. The two experiences couldn’t have been more different, says Mike.

Gerri’s first diagnosis came shortly after she started a new job. Gerri, who had a PhD in biochemistry, worked in the pharmaceutical industry. She was feeling tired a lot, but she was brushing it off, blaming it on the stress that comes with a new job. However, Mike urged her to see a doctor, so Gerri had a coworker, who was also a doctor, check her out. The coworker sent Gerri directly to the emergency room. She was admitted and was in the hospital for 45 days undergoing chemotherapy. “She had a very severe case,” says Mike.

It was overwhelming to say the least, but Mike quickly took on the role of caregiver. He soon realized that the simple things were the most helpful. Mike made sure to bring Gerri some of the comforts of home. He made sure she had t-shirts and sweatshirts to wear instead of hospital gowns. He brought Gerri her laptop and yarn for crocheting. He brought her the few foods that she could actually taste after the chemo wiped out her taste buds. Mike was also her sounding board. He listened as she talked through her care options and how they would affect her quality of life. He was simply there for her, walking with her daily so she could get some exercise and maintain circulation, so she didn’t have to stay in bed with the compression sleeves on her legs. “I did all the little things that could help her be a little more in control and have as close to a normal day as possible,” says Mike adding that Gerri’s background in biochemistry and the pharmaceutical industry gave her unique insight into her care. “She started charting her tests and data so she could be a part of the solution and have informed discussions with doctors. She wanted details and wanted to know what to expect.”

Mike and Gerri learned that patients and care partners are given overwhelming amounts of information and that they have the responsibility of learning all they can and asking questions and making decisions. He says that doctors aren’t always keeping up with the latest research and that it is easy for them to get stuck in routine treatments. He found that doctors talk about options based on their experience and their skill set, but that doesn’t mean that approach is best for the patient. He says that being comfortable with the doctor and getting a second opinion if wanted are also important. He and Gerri learned to be active participants in her treatment and care.

In addition, Mike and Gerri were always looking ahead and focusing on the future. He concentrated on keeping her spirits up. When she was bald from chemo Gerri was looking at wigs and Mike says he encouraged her to go wild and get a bright red wig. “She didn’t go for it but being outrageous and adding humor to the moment was a way for me to help,” he says.

It was while she was in her fourth year of remission that Gerri found Patient Empowerment Network (PEN). “Gerri liked PEN’s focus on making the information understandable for patients, giving them easy-to-digest information to make decisions,” says Mike. Gerri jumped right in and helped to develop the Network Manager program which launched in March 2020. The program is made up of volunteers around the country who use their own patient experience to support patients and their care partners through their own cancer journey and on to a path to empowerment. “PEN is very important because it is patient-focused,” Mike says, and that’s why PEN appealed to Gerri. She liked that she could use her scientific background to help patients understand the information and to make sensible decisions for themselves. Gerri served as the AML Network Manager and was named a finalist for the 2020 Reuters Patient Champion Award in the Patient Advocate category.

Then in July 2020, Gerri got her second diagnosis. She celebrated her birthday July 7 and a week later, Gerri was back in the hospital. “This time she had a second type of leukemia which threw doctors for a loop,” says Mike. “Usually when leukemia patients relapse, it’s with the same type of leukemia.”

Although they had been through a leukemia diagnosis before, this experience was nothing like the first. “It was very different. It was during covid so of course, unlike before, when she could have friends drop in, she no longer could have visitors. Everything was more restrictive with covid,” says Mike. “At least I could be there every day.”

This time, Gerri and Mike were not expecting a longer hospital stay. They were expecting outpatient treatment that would be easier, and they were looking forward to time away from the hospital. The first time was so scary, but this time they were experienced, and they knew what to expect, but what they expected is not what happened.

After about a week Gerri got worse. Doctors were trying to figure out what was wrong, but they were unable to save her. Gerri died July 27, 2020. The autopsy revealed she had an antibiotic resistant bacterial infection.

More than a year later, Mike says he’s doing okay. “Everyone handles it differently,” he says. “You have to give yourself permission to not be happy and also give yourself permission to keep going and find other things to fill the hole.” In September 2021, he retired from his career as a web project manager, and recently he reached out to PEN looking for a way to use his skills to help others. “Gerri was the driver, so now I’ve been drifting,” he says. “That’s why I contacted PEN. I wanted to do something of value.”

Mike will be an invaluable addition to the PEN network of volunteers.

Which Tests Do You Need Before Deciding on an AML Treatment Path?

Which Tests Do You Need Before Deciding on an AML Treatment Path? from Patient Empowerment Network on Vimeo.

 Why is it important to ask about biomarker testing for your AML? Find out how test results could reveal more about your AML and may help determine the most effective treatment approach for your individual disease.

See More From INSIST! AML


Related Resources:

AML Targeted Therapies, What’s Available and How Do They Work

Factors to Consider When Choosing an AML Treatment

Understanding Key Tests That Affect AML Treatment Choices


Transcript:

Why do you need biomarker testing before deciding on a treatment plan for your acute myeloid leukemia—also known as AML?

The results may predict how your AML will behave and could indicate that one type of treatment may be more effective than another.

Biomarker testing—also referred to as risk stratification, genetic testing, or molecular testing—identifies specific gene mutations, proteins, chromosomal abnormalities and/or other molecular changes that are unique to your AML.

The results of these tests are used to determine if you have low-risk or high-risk AML to help guide prognosis and to evaluate the goals of treatment.

There are certain biomarkers—such as the FLT3, IDH1 and IDH2 mutations—that could indicate that your AML may respond well to a targeted therapy. There are several FDA-approved targeted therapies—known as inhibitor therapies—which treat patients with these mutations.

Additionally, the identification of other biomarkers—such as TP53, NPM1, or CEBPA mutations, to name a few—may aid in assessing your prognosis, determining a treatment course, or may identify if an allogeneic stem cell transplant may be appropriate. Results of these tests may also suggest that a clinical trial is your best treatment option.

So, how can you Insist on the best care for YOUR AML?

• First, always bring a friend or a loved one to your appointments to help you process information and to take notes.

• Ask your doctor if you have had, or will receive, biomarker testing and how the results may impact your care and treatment plan. Be sure to ask for paper or electronic copies of your important test results.

• Finally, always speak up and ask questions. It’s important that you understand all of the information that you want to know about your AML to help make the best treatment decisions for you. You are your own best advocate, and treating AML is a team approach.

To learn more about your AML and to access tools for self-advocacy, visit powerfulpatients.org/AML

Empowered AML Patient: Ask the AML Expert

Empowered AML Patient: Ask the AML Expert from Patient Empowerment Network on Vimeo.

For acute myeloid leukemia (AML) patients, how can they get the best care no matter location? Watch as expert Dr. Catherine Lai and AML patient Sasha Tanori discuss advancements in AML detection and treatments, the use of remote monitoring, questions to ask if you suspect you have AML, how AML can vary by age, and clinical trials access for optimal care.

See More from Best AML Care No Matter Where You Live

Related Resources:

What Treatments Are on the Horizon for Acute Myeloid Leukemia Patients?

What Treatments Are on the Horizon for Acute Myeloid Leukemia Patients?

What Role Does a Multidisciplinary Team Play in AML Care?

What Role Does a Multidisciplinary Team Play in AML Care? 

How an AML Survivor’s Resilience Saved Her Life 


Transcript:

Sasha Tanori:

I want to start off by saying, thank you so much for joining me, Dr. Lai, I greatly appreciate it.

Dr. Catherine Lai:

Thank you for having me.

Sasha Tanori:

Dr. Lai, early on before my diagnosis, AML, many of my doctors I saw dismissed my symptoms and attributed them to me being plus-sized. Can you share with us how detecting AML has evolved over the last several years?

Dr. Catherine Lai:

Yes, and I’m sorry to hear that, but what I would say about the diagnosis is that how we diagnose patients with AML, unfortunately, hasn’t changed significantly in the sense that we still have to rely on our standard techniques with the bone marrow biopsy. But what I would say is that the technology for how we risk-stratify patients and subsequently treat patients has improved because we have a better understanding of the molecular characteristics of AML now, and so it has helped us in terms of being able to identify more targeted treatments, where patients are more likely to respond and help us with both our short-term and our long-term plan.

Sasha Tanori:

Right, got it. My next question is, can you speak on how monitoring and treating AML has changed during the pandemic?

Dr. Catherine Lai:

Yeah, so unfortunately, as you experience it, you spent your induction in the hospital for several weeks, and when you’re able to be in the hospital with support, either from friends or from family, it makes the experience much, much easier and with COVID, especially at the height of the pandemic, we weren’t allowed our hospital. And I know several of my colleagues as well, the hospitals weren’t allowing any visitors and that put a lot of stress on the patient, on family members, on the staff, the nurses, the physicians, really the whole care team. Just because we were needing to spend extra time to make sure that everybody was updated, so either if we couldn’t do it on FaceTime, having to make sure other phone calls later, which is just…it is what it is. And we made the best of the situation. Currently, we are allowing to have a limited visitor policy, which is helpful. I think the other thing that has really changed is what we consider when we’re starting treatment, if patients obviously need induction chemotherapy and need to be in the hospital, we don’t change the recommendation based on that, but if there are patients who…

Dr. Catherine Lai:

There are options whether or not the patient is done inpatient versus outpatient, I think that that’s a huge consideration in terms of quality of life and how we manage those patients.

Sasha Tanori:

Can you speak to the advances and treatment options for high-risk AML patients?

Dr. Catherine Lai:

Yes, so fortunately, we have made a lot of progress in the AML space, that is one thing that is really exciting, I would say. Since 2017, there have been nine FDA approvals for AML, and prior to 2017, and we have been using the same chemotherapy for the last 40 years. Now, that’s not for lack of trying. There are many leukemia physicians who have been working at this for the duration of their careers, but AML just is very heterogeneous, and it’s very smart. It’s smarter than we are, and it’s constantly changing, and so that has made it challenging in terms of being able to treat it. So, there are newer treatment options, both modifications to traditional chemotherapy as well as other targeted therapies that have improved the landscape for AML and high-risk AML in particular. That’s awesome.

Sasha Tanori:

Dr. Lai, I think another factor that played a role in my diagnosis is somewhat being delayed is my age, I was 24 at the time, what are some questions others who suspect they have AML should ask to rule out the diagnosis?

Dr. Catherine Lai:

So, Sasha, that’s a really good question. And what I would say is that, as you are aware, the median age of AML diagnosis is 68, so not to say that we don’t have young patients…I have plenty of young patients, but it doesn’t come to…it’s not a common thing to think about in younger patients right off the bat, the other thing that contributes to that is also AML compared to other cancers is an uncommon cancer. There are only 25,000 cases of newly diagnosed in the United States per year because it’s not as common in younger patients and because it’s not that common…doctors often want to rule out other simple things rather than just going straight to a cancer diagnosis though, unfortunately, that can lead to some delays, what I would say in young patients who are healthy is that they shouldn’t have low blood counts that can’t be explained for other reasons. So, I think having prompt attention in terms of if their blood counts are abnormal, to really understanding why they’re abnormal, and those are things that can be easily work up, and if all those things are rolled out, then you’re talking about doing a bone marrow biopsy I don’t like to do procedures for unnecessary reasons, but it’s one of those things that you can also…

I mean, I think if you have a physician who is the astute and is thinking about that, that you can…you can get to a diagnosis pretty quickly, I mean AML is a diagnosis in the name acute. It comes on acutely, so that means days to week, so I suspect you are probably feeling very well and over a very short prior of time felt very unwell, and you’re very in tune to your body, and that is very important because patients are smarter than we give them credit for, and so being persistent and knowing that something is wrong goes a long way. Again, I’m sorry that you had to deal with that, and I’m glad that they finally made the right diagnosis, but I think just awareness and education. While it is an uncommon disease, I think having a larger burden and strain that happen on younger patients because you haven’t been working for the majority of your life, and it takes a huge toll on what your potential is, both as a person, but economically and all sorts of things. So it’s a huge problem

Sasha Tanori:

Does prognosis of AML vary by age?

Dr. Catherine Lai:

So, yes and no. So let me answer that in two steps, so it does in the sense that older patients are more likely to have more comorbidities, so more medical problems, and so therefore have a higher likelihood of having complications, and also as patients get older, they acquire more mutations and more abnormality, so those molecular abnormalities, and so therefore, older patients then are become more challenging to treat as well. What I would say though, is that we typically risk-stratify based on molecular factors, so the different mutation than somebody has and the age and the comorbidities don’t necessarily play into that role of stratification, so for example, whether or not you’re receiving a transplant or not…age is a factor, if you’re kind of in that little risk category, the intermediate risk category, the other thing I would say is that for young patients, they are able to tolerate because many don’t have medical problems, so they are able to tolerate treatment better, so when I’m talking about numbers and likelihood of response and overall survival, those…all those mediums assume that somebody is in their mid-60s, and so I adjust the numbers because for younger patients that those numbers are likely higher…

Because they’re less likely to have complications.

Sasha Tanori:

Right. I had many medical professionals that participated early on in my care. Can you speak on the role of the multidisciplinary care team that plays in AML care?

Dr. Catherine Lai:

Yeah, this is…this is an excellent question. I would say that treating leukemia is a team sport, everybody has their role, and it’s not just one person, and this is part of why I love treating leukemia patients, is that we’re able to engage multiple players, everybody is good at their particular thing, and so one analogy is that…we’re kind of like a baseball team, is that you want everybody to be able to do their own…have their own position. What a standard for our center is that we have the leukemia physician, there’s a specific leukemia nurse, we engage our social worker very early on, and also our cancer nutritionists and physical therapist and occupational therapist so we all work together at different parts of the treatment journey to make sure the patient is getting everything that they need and the whole person is being taken care of.

Sasha Tanori:

Right. AML patients, just like anyone else, want to live and live a very long time. Are AML patients at risk for secondary cancers, and are there any studies that speak on this?

Dr. Catherine Lai:

Yeah, so I would say everything has its risk and benefits at the time of diagnosis, you need the chemotherapy in order to get into remission, and then if you need the transplant, whether or not you’re getting radiation and then further some chemotherapy before the transplant, so that’s not without risks, so especially in a young patient, for example, in your particular case, you’re at risk for secondary treatment-related MDS and other bone marrow-related disorders that could occur, most patients who are in their 60s who, if they live long enough would be at risk, but most of those patients will die of something else before you have that opportunity. As a young patient, the other thing to be aware of, especially with, given that you’ve had transplant, is that the increased risk of cardiovascular effects, as well as making sure in patients who have had your whole-body radiation, other effects in terms of their thyroid, lung function, and then screening earlier for other cancers. So in terms of looking at studies, we know that these risks are slightly increased and that monitoring starts a lot sooner, especially in young patients. So I think just being aware of what you need to do.

Dr. Catherine Lai:

We also have a survivorship clinic, which I think is really important to help understand, you know what your risks are, because once your leukemia is in remission, we don’t want you to develop other medical problems, so it’s important just for patients to be educated so that they know how to take care of their body at each stage of their…again, of their journey.

Sasha Tanori:

Alrighty, after getting a bone marrow transplant three years later, I’m still dealing with graft-versus-host disease or GVHD, but there are other obstacles that I’m also facing. Does GVHD ever truly go away or is it something that I’m going to have to learn to live with?

Dr. Catherine Lai:

Yeah, I wish I had a magic answer for you. Our data is that it gives us guidance for each patient, but then also each patient as an individual and how they respond to different medications, and the nuances of that is…it can be different. So what I would say is that there are patients who you have chronic GVHD for years and it can eventually go away, and in some patients, they deal with it for a lifetime, you’re young enough, and I’m hopeful enough that at some point it will improve and get better. So I would be cautiously optimistic that things will improve.

Sasha Tanori:

I’m…I’m trying my best.

Dr. Catherine Lai:

It’s hard.

Sasha Tanori:

Yes, it’s very hard. Yeah, my care team suggested a clinical trial for a new drug focusing on improving my lung function, fortunately, my lungs improved on their own. Dr. Lai, not every AML patient is offered clinical trial as a care option, what advice you have for AML patients who are seeking clinical trial and what’s the best way to locate one?

Dr. Catherine Lai:

Yeah, so this is an area, a huge area of unmet need, I would say in general, across all oncology trials, and I think less than 10  percent of the patient population is on trials, there’s a lot of stigmas around clinical trials and are you getting… Are you getting a drug that we don’t know what’s gonna work, am I being…am I being tested? In oncology, I would say for the most part, we try to make trials where you’re being measured to the standard, so you’re getting the standard plus, or we’re trying not to…just in terms of doing what’s best for the patient, in general, I don’t offer trials to patients where I don’t think that there’s scientifically a rationale for those drugs, but to answer your question, the best place to look is on clinicaltrials.gov. That’s cumbersome. If you don’t know what you’re looking for, I can give you a lot of unnecessary information. There are a lot of other resources out there, The Leukemia & Lymphoma Society is a great resource. I know that they have online or people that you can talk to in terms of helping you direct specific clinical trials, I know depending on where you live in the country, there are other local New Chapters, oncology chapters that we have that can help patients find…

And have access to clinical trials, and then I think the biggest thing is just if a patient is with the community oncologist, having enough education to say, can I have a referral to an academic institution where they can ask those questions and get that information, and local community oncologists are fantastic, but they see everything, they see breast cancer, they see one cancer where the academic centers were specialized where all I see is leukemia and MDS kind of acute leukemias. So it’s just a different set of knowledge.

Sasha Tanori:

Okay, my next question is, I’ve had one telemedicine visit via my online portal, is the role of the telemedicine in AML care becoming more important?

Dr. Catherine Lai:

Yes, so what I would say…so this is my personal opinion, but in my opinion, that medicine compared to other industries tends to be a little bit farther behind, we’re not as quick to adapt the newest technology where COVID has helped, I think is at least in my practices, help utilize telehealth in the sense that there was a period of time where I was seeing fewer patients and then it really picked up because especially for patients who have a local oncologist but want a second opinion, the telehealth really offers that they don’t have to travel two hours to come see me to get that opinion. So what I would say is that it cannot replace the physical exam, it can’t replace a face-to-face discussion when you’re really talking about new diagnosis and therapy, because I really do think that that should be in person, but where… I have found that it’s been really helpful is if I’ve had an initial visit with the patient, and they either have a local oncologist, so I’m just checking in with them periodically, or if it’s to review results, say they’ve had a bone marrow biopsy and it’s…

They’re further along in their treatment, or if they’re just reviewing imaging results or something where I don’t necessarily need to see them have a physical exam and I’ve seen them recently, and so I do everything else that’s going on, but can I check in to review a specific part of information. I think that telehealth would have a role, and I hope it continues to have a role.

Sasha Tanori:

Yeah, yeah definitely, I agree. It’s really helpful in that sort of way, so you don’t have to actually leave the comfort of her home for something that’s not really super serious. You know?

Dr. Catherine Lai:

Exactly, yeah, I think what happens is patients do tend to…what I’ve noticed patients do is under-report, so it’s for… Not for infrequent visits, so for patients who are followed on a regular basis, it does allow there to be some ease of burden in terms of how we treat our patients.

Sasha Tanori:

Right. So a silent side effect that people facing cancer don’t always talk about is mental health. Are there any treatments or coping methods that you recommend for patients and care partners?

Dr. Catherine Lai:

Yeah, so I would say to get social work involved early on, I think there’s also…it’s silent, ’cause there’s a lot of stigma around it, is that is something that we should be talking about or not talking about or…I can handle it, that sort of thing, so I introduce our social worker very early to know that she is a resource for the patients, no matter how big or how small, just to try to get them used to that idea. What I would also say is just talking with as many people as possible as I’m sure you realize that the network and the community is small and everybody is willing to help each other out, so once you put yourself out there, you’ll realize that there are other resources out there, and you’re not alone in this journey, and what your cancer team offers you is different than what other patients who have gone through exactly what you’ve gone through can offer, and so I know that there are other resources out there in terms of societies that connect other patients who have the same diagnosis, so I would say it’s really just about education and talking and knowing that it’s okay to talk about your diagnosis and no matter what format that is, or if it’s a little bit now and a little bit later, and also just normalizing it, in the sense of the feelings you have are valid and normal, and if you don’t have those feelings is actually when I get worried about patients because you’re supposed to have certain reactions, you were a young patient and you were diagnosed with cancer.

That’s not a trivial thing. And we’re just…we’re all here to help you and help the patients go through everything…

Sasha Tanori:

So for my last question is the future bright in AML treatment and can you speak about any exciting studies that you are working on, that AML patients and their families should stay tuned for?

Dr. Catherine Lai:

Yes, so I am excited. I am excited to say that I think in my lifetime, I will be a part of AML change and we have already seen it. I have mentors who are in their 60s, who have used the same therapies, they use them for the entirety of their career. And so as I mentioned, we only have your 9 FDA approvals. I think there are more coming… I think what I would like to mention is I think the use of immunotherapy, bone marrow transplant is the original immunotherapy, but as you know, there are many risks and benefits and complications, and so how we manipulate the immune system or how we use drugs to help manipulate the immune system, I think it’s a work in progress. It has been more successful in other cancers, not as successful in AML yet, but I think we will get there. The other thing would be, is how… We look at minimal residual disease. So, as you know, but for everybody else, we consider a complete remission is less than anything less than 5 percent blast or 5 percent leukemia cells but we know that anything greater than zero is bad, and you have more than zero, the disease will come back at some point.

So looking to how we monitor, going back to those molecular technologies and how we’re monitoring for residual disease so that we can detect disease faster, so I think really the concept of detection and prevention will come into a huge role because also if we can detect the disease relapse sooner, we’re treating less disease and then there’s less side effects and less toxicity, and then I think the last thing would be health outcomes of a lot of what we’ve been talking about just in terms of the whole picture and how we can better treat these patients I also think there’s a huge role for looking at each individual person and their age and their medical problems, and they’re a physiologic age as opposed to their chronological age and how we can best treat the patient so they can have the best outcome.

Sasha Tanori:

All right, well, thank you so much, Dr. Lai, for taking the time to speak with me and for all you’ve done for the AML community and our patient’s families, everyone.

Dr. Catherine Lai:
Thank you, thank you so much for having me. I’ve really appreciated you putting yourself out there… Thank you.

What Treatments Are on the Horizon for Acute Myeloid Leukemia Patients?

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What can acute myeloid leukemia (AML) patients expect in the future of AML studies? Watch as expert Dr. Catherine Lai shares insight about the state of FDA approvals. what is in pipeline for AML treatment, and disease monitoring technologies for improved patient care.

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Transcript:

Sasha Tanori:

Is the future bright in AML treatment, and can you speak about any exciting studies that you are working on, that AML patients and their families should stay tuned for?

Dr. Catherine Lai:

Yes, so I am excited. I am excited to say that I think in my lifetime, I will be a part of AML change and we have already seen it. I have mentors who are in their 60s, who have used the same therapies, they use them for the entirety of their career. And so, as I mentioned, we only have your nine FDA approvals. I think there are more coming…I think what I would like to mention is I think the use of immunotherapy, bone marrow transplant is the original immunotherapy, but as you know, there are many risks and benefits and complications. And so how we manipulate the immune system or how we use drugs to help manipulate the immune system, I think it’s a work in progress. It has been more successful in other cancers, not as successful in AML yet, but I think we will get there. The other thing would be, is how…we look at minimal residual disease. So, as you know, but for everybody else, we consider a complete remission is less than anything less than 5 percent blast or 5 percent leukemia cells but we know that anything greater than zero is bad, and you have more than zero, the disease will come back at some point.

So looking to how we monitor, going back to those molecular technologies and how we’re monitoring for residual disease so that we can detect disease faster, so I think really the concept of detection and prevention will come into a huge role because also if we can detect the disease relapse sooner, we’re treating less disease and then there’s less side effects and less toxicity, and then I think the last thing would be health outcomes of a lot of what we’ve been talking about just in terms of the whole picture and how we can better treat these patients I also think there’s a huge role for looking at each individual person and their age and their medical problems, and they’re a physiologic age as opposed to their chronological age and how we can best treat the patient so they can have the best outcome.

Acute Myeloid Leukemia, Recommended Coping Methods and Mental Health

Acute Myeloid Leukemia, Recommended Coping Methods and Mental Health from Patient Empowerment Network on Vimeo.

How can acute myeloid leukemia (AML) patients and care partners find coping methods? Watch as expert Dr. Catherine Lai shares advice and resources to help with mental health and ways to cope with AML over the long term.

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Advice for Acute Myeloid Leukemia Patients Seeking a Clinical Trial 


Transcript:

Sasha Tanori:

Right. So a silent side effect that people facing cancer don’t always talk about is mental health. Are there any treatments or coping methods that you recommend for patients and care partners?

Dr. Catherine Lai:

Yeah, so I would say to get social work involved early on, I think there’s also…it’s silent, because there’s a lot of stigma around it, is that is something that we should be talking about or not talking about or…I can handle it, that sort of thing, so I introduce our social worker very early to know that she is a resource for the patients, no matter how big or how small, just to try to get them used to that idea. What I would also say is just talking with as many people as possible as I’m sure you realize that the network and the community is small, and everybody is willing to help each other out. So once you put yourself out there, you’ll realize that there are other resources out there, and you’re not alone in this journey, and what your cancer team offers you is different than what other patients who have gone through exactly what you’ve gone through can offer, and so I know that there are other resources out there in terms of societies that connect other patients who have the same diagnosis. So I would say it’s really just about education and talking and knowing that it’s okay to talk about your diagnosis and no matter what format that is, or if it’s a little bit now and a little bit later, and also just normalizing it, in the sense of the feelings you have are valid and normal. And if you don’t have those feelings is actually when I get worried about patients because you’re supposed to have certain reactions, you were a young patient and you were diagnosed with cancer.

That’s not a trivial thing. And we’re just…we’re all here to help you and help the patients go through everything.

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Transcript:

Sasha Tanori:

My care team suggested a clinical trial for a new drug focusing on improving my lung function, fortunately, my lungs improved on their own. Dr. Lai, not every AML patient is offered a clinical trial as a care option, what advice do you have for AML patients who are seeking clinical trials, and what’s the best way to locate one?

Dr. Catherine Lai:

Yeah, so this is an area, a huge area of unmet need, I would say in general, across all oncology trials, and I think less than 10 percent of the patient population is on trials, there’s a lot of stigmas around clinical trials and are you getting…are you getting a drug that we don’t know what’s going to work, am I being…am I being tested? In oncology, I would say for the most part, we try to make trials where you’re being measured to the standard, so you’re getting the standard plus, or we’re trying not to…just in terms of doing what’s best for the patient, in general, I don’t offer trials to patients where I don’t think that there’s scientifically a rationale for those drugs, but to answer your question, the best place to look is on clinicaltrials.gov. That’s cumbersome. If you don’t know what you’re looking for, I can give you a lot of unnecessary information. There are a lot of other resources out there, The Leukemia & Lymphoma Society is a great resource. I know that they have online or people that you can talk to in terms of helping you direct specific clinical trials, I know depending on where you live in the country, there are other local new chapters, oncology chapters that we have that can help patients find…

And have access to clinical trials, and then I think the biggest thing is just if a patient is with the community oncologist, having enough education to say, can I have a referral to an academic institution where they can ask those questions and get that information, and local community oncologists are fantastic, but they see everything, they see breast cancer, they see one cancer where the academic centers were specialized where all I see is leukemia and MDS kind of acute leukemias. So, it’s just a different set of knowledge.

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Advice for Acute Myeloid Leukemia Patients Seeking a Clinical Trial from Patient Empowerment Network on Vimeo.

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Transcript:

Sasha Tanori:

My care team suggested a clinical trial for a new drug focusing on improving my lung function, fortunately, my lungs improved on their own. Dr. Lai, not every AML patient is offered a clinical trial as a care option, what advice do you have for AML patients who are seeking clinical trials, and what’s the best way to locate one?

Dr. Catherine Lai:

Yeah, so this is an area, a huge area of unmet need, I would say in general, across all oncology trials, and I think less than 10 percent of the patient population is on trials, there’s a lot of stigmas around clinical trials and are you getting…are you getting a drug that we don’t know what’s going to work, am I being…am I being tested? In oncology, I would say for the most part, we try to make trials where you’re being measured to the standard, so you’re getting the standard plus, or we’re trying not to…just in terms of doing what’s best for the patient, in general, I don’t offer trials to patients where I don’t think that there’s scientifically a rationale for those drugs, but to answer your question, the best place to look is on clinicaltrials.gov. That’s cumbersome. If you don’t know what you’re looking for, I can give you a lot of unnecessary information. There are a lot of other resources out there, The Leukemia & Lymphoma Society is a great resource. I know that they have online or people that you can talk to in terms of helping you direct specific clinical trials, I know depending on where you live in the country, there are other local new chapters, oncology chapters that we have that can help patients find…

And have access to clinical trials, and then I think the biggest thing is just if a patient is with the community oncologist, having enough education to say, can I have a referral to an academic institution where they can ask those questions and get that information, and local community oncologists are fantastic, but they see everything, they see breast cancer, they see one cancer where the academic centers were specialized where all I see is leukemia and MDS kind of acute leukemias. So, it’s just a different set of knowledge.

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Transcript:

Sasha Tanori:

After getting a bone marrow transplant three years later, I’m still dealing with graft-versus-host disease or GVHD, but there are other obstacles that I’m also facing. Does GVHD ever truly go away or is it something that I’m going to have to learn to live with?

Dr. Catherine Lai:

Yeah, I wish I had a magic answer for you. Our data is that it gives us guidance for each patient, but then also each patient as an individual and how they respond to different medications, and the nuances of that is…it can be different. So what I would say is that there are patients who you have chronic GVHD for years, and it can eventually go away. And in some patients, they deal with it for a lifetime, you’re young enough, and I’m hopeful enough that at some point it will improve and get better. So I would be cautiously optimistic that things will improve.

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Transcript:

Sasha Tanori:

AML patients, just like anyone else, want to live and live a very long time. Are AML patients at risk for secondary cancers, and are there any studies that speak on this?

Dr. Catherine Lai:

Yeah, so I would say everything has its risk and benefits at the time of diagnosis, you need the chemotherapy in order to get into remission, and then if you need the transplant, whether or not you’re getting radiation and then further some chemotherapy before the transplant, so that’s not without risks. So especially in a young patient, for example, in your particular case, you’re at risk for secondary treatment-related MDS and other bone marrow-related disorders that could occur, most patients who are in their 60s who, if they live long enough would be at risk, but most of those patients will die of something else before you have that opportunity. As a young patient, the other thing to be aware of, especially with, given that you’ve had transplant, is that the increased risk of cardiovascular effects, as well as making sure in patients who have had your whole body radiation, other effects in terms of their thyroid, lung function, and then screening earlier for other cancers. So in terms of looking at studies, we know that these risks are slightly increased and that monitoring starts a lot sooner, especially in young patients. So I think just being aware of what you need to do.

We also have a survivorship clinic, which I think is really important to help understand, You know what your risks are, because once your leukemia is in remission, we don’t want you to develop other medical problems, so it’s important just for patients to be educated so that they know how to take care of their body at each stage of their…again, of their journey

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Transcript:

Sasha Tanori:

I had many medical professionals that participated early on in my care. Can you speak on the role of the multidisciplinary care team that plays in AML care?

Dr. Catherine Lai:

Yeah, this is…this is an excellent question. I would say that treating leukemia is a team sport, everybody has their role, and it’s not just one person, and this is part of why I love treating leukemia patients, is that we’re able to engage multiple players, everybody is good at their particular thing, and so one analogy is that…we’re kind of like a baseball team, is that you want everybody to be able to do their own…have their own position. What a standard for our center is that we have the leukemia physician, there’s a specific leukemia nurse, we engage our social worker very early on, and also our cancer nutritionists and physical therapist and occupational therapist so we all work together at different parts of the treatment journey to make sure the patient is getting everything that they need and the whole person is being taken care of.

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Does Acute Myeloid Leukemia Prognosis Vary by Age? from Patient Empowerment Network on Vimeo.

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Transcript:

Sasha Tanori:

Does prognosis of AML vary by age?

Dr. Catherine Lai:

So, yes and no. So let me answer that in two steps, so it does in the sense that older patients are more likely to have more comorbidities, so more medical problems, and so therefore have a higher likelihood of having complications, and also as patients get older, they acquire more mutations and more abnormality, so those molecular abnormalities, and so therefore, older patients then are become more challenging to treat as well. What I would say though, is that we typically risk-stratify based on molecular factors, so the different mutation than somebody has and the age and the comorbidities don’t necessarily play into that role of stratification, so for example, whether or not you’re receiving a transplant or not…age is a factor, if you’re kind of in that little risk category, the intermediate risk category, the other thing I would say is that for young patients, they are able to tolerate because many don’t have medical problems, so they are able to tolerate treatment better, so when I’m talking about numbers and likelihood of response and overall survival, those…all those mediums assume that somebody is in their mid-60s, and so I adjust the numbers because for younger patients that those numbers are likely higher…

Because they’re less likely to have complications.