Tag Archive for: Moffitt Cancer Center

Myeloproliferative Neoplasm Financial and Care Resources

Myeloproliferative Neoplasm Financial and Care Resources from Patient Empowerment Network on Vimeo.

Some myeloproliferative neoplasm (MPN) patients may run into care barriers, so what can be done to help them? Expert Natasha Johnson from Moffitt Cancer Center shares her perspective on how she assists MPN patients with resources and how healthcare providers can help in overcoming care barriers.

[ACT]IVATION TIP

“…Let the healthcare team know, especially the great players here that are helpful are the nurses involved in the care team and the pharmacist who know of these outside resources to provide financial assistance so patients can get medication.”

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How Can Myeloproliferative Neoplasm Care Barriers Be Overcome

How Can Myeloproliferative Neoplasm Care Barriers Be Overcome?

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How Can MPN Providers and Patients Guard Against Disease Progression?

How Can MPN Patient Advocacy Groups Help Patients

How Can MPN Patient Advocacy Groups Help Patients?

Transcript:

Natasha Johnson: 

When I’m speaking to MPN patients or caregivers about barriers, I really try to provide resources. All it takes is a Google search to look up the MPN Foundation or many other organizations that provide education. They provide direction to reach MPN experts. There are ways to get ahold of them and see them. Visits can be done through Zoom. Some large cancer centers even do charity care, so patients can get in who do not have insurance, but I would provide those resources whether I’m seeing that patient or I’m in the community teaching or at a supportive care group. I think it’s very, very important that patients need to know that they can access care, and it’s by researching, doing some research and being active in that care.

Secondly, when I’m speaking to patients about issues with medication costs, which can be a great barrier, my activation tip to them again, would be to let the healthcare team know, especially the great players here that are helpful are the nurses involved in the care team and the pharmacist who know of these outside resources to provide financial assistance so patients can get medication.

It’s very important, don’t let it be a barrier or stop anything or stop treatment, but pursue that by making us aware and then we can help you. 


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How Can Myeloproliferative Neoplasm Care Barriers Be Overcome?

How Can Myeloproliferative Neoplasm Care Barriers Be Overcome? from Patient Empowerment Network on Vimeo.

How can myeloproliferative neoplasm (MPN) providers and advocates help patients overcome care barriers? Expert Natasha Johnson from Moffitt Cancer Center shares financial resources and additional ways MPN expert care can be accessed.

[ACT]IVATION TIP

“…let the care team know there are financial resources available, whether that’s through foundations or the manufacturer itself, the care team, including the nurses and the pharmacists, can help direct and guide to get patients the medications that they need to treat their disease.

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Related Resources:

How Can MPN Providers and Patients Guard Against Disease Progression

How Can MPN Providers and Patients Guard Against Disease Progression?

How Can Underrepresented MPN Communities Access Support

How Can Underrepresented MPN Communities Access Support

How Can MPN Experts Help Inform Patients About Clinical Trials

How Can MPN Experts Help Inform Patients About Clinical Trials?

Transcript:

Natasha Johnson: 

There are several barriers to accessing care for patients with MPNs. Specifically, the first one I would say is accessing an MPN expert. You know when people live out in the communities or there’s difficulty with transportation, or they don’t have insurance they may be seen by public healthcare or locally or not at all. And there are really minimal reasons that a patient should not be able to see an MPN expert. Nowadays that we have Zoom visits, consults can be done through Zoom, even follow-up appointments can be done through Zoom. Labs can be taken locally. We can review labs if they’ve been done by the health department or primary care physician.

But I strongly, strongly, strongly encourage all patients who are suspected to have an MPN or newly diagnosed with an MPN. Try to get in with an MPN expert. Secondly, a great barrier to MPN care is the cost of medication. We know medications are very, very expensive, and even patients that have great insurances still cannot afford these medications.

So my activation tip for that would be to let the care team know there are financial resources available, whether that’s through foundations or the manufacturer itself, the care team, including the nurses and the pharmacists, can help direct and guide to get patients the medications that they need to treat their disease.


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Developing Research and New Myeloma Treatment Options

Developing Research and New Myeloma Treatment Options from Patient Empowerment Network on Vimeo.

What are the new developments in myeloma treatment and research? Dr. Brandon Blue discusses how the landscape of myeloma care has changed in recent years and treatment options for high-risk myeloma, and he shares developing research that patients should know about.

Dr. Brandon Blue is Assistant Member and Clinical Instructor in the Department of Malignant Hematology at Moffitt Cancer Center in Tampa, FL. Learn more about Dr. Brandon Blue.

See More from Evolve Myeloma

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Myeloma CAR T-Cell Therapy_ How Does It Work and What Are the Risks

Myeloma CAR T-Cell Therapy: How Does It Work and What Are the Risks?

How Is High-Risk Myeloma Assessed

How Is High-Risk Myeloma Assessed?

Transcript:

Katherine Banwell:

Dr. Blue, the landscape of myeloma care has changed significantly in recent years. Are there new factors to consider when working with a patient to choose a treatment approach?   

Dr. Brandon Blue:

Yeah. The good thing about myeloma is it’s literally always changing, and that’s a great thing. Compared to some of the other cancers, or really even other diseases, sometimes we’ve been using the same things since the ‘90s. But luckily for myeloma every couple years we get something that’s bigger, and typically better. So, right now some of the new things that are available for patients are all the way from newly diagnosed, all the way to people who have relapsed disease. So, we have a lot of different options that we can potentially go into.  

Katherine Banwell:

Dr. Blue, what treatment options are available for myeloma that’s considered high-risk?  

Dr. Brandon Blue:

Yeah. So, unfortunately, there’s some people who have multiple myeloma whose disease does not follow the standard pattern. Unfortunately, what happens is that there are certain mutations that actually happen in the biology of those cancer cells that actually cause them to survive when they should be dying. And unfortunately, that means that sometimes the chemotherapy and the medicines that we give them becomes a little bit more resident. 

A lot of times when we give people treatment the one question they ask is, “How long will it last?” But, unfortunately, there’s some people who have those high-risk features that unfortunately, despite whatever numbers we tell them of how long it may last, theirs actually may last a little bit shorter, and the disease may come back a little bit quicker. So, what we have to do as the doctors, and as the team, taking care of these patients is maybe do things a little bit more outside of the box, and do things that might tend to be a little bit more aggressive. 

Because sometimes we have to match the aggressiveness of the disease. If the cancer itself is starting to be high-risk or aggressive, sometimes we may have to do some nontraditional things to kind of make sure that they have a good outcome and a good result.  

Katherine Banwell:

Dr. Blue, is there developing research that myeloma patients should know about? And what are you hopeful about?  

Dr. Brandon Blue:

Yeah. One of the things that happens right now is that we have CAR T that’s available for patients got approved by the FDA. However, the CAR T product that we currently have available only have one target, which is called the BCMA, or B-cell maturating antigen. 

Which is part of the plasma cells, however, there are so many other targets on the plasma cells that potentially can be targets for new medications. And the good thing is that there are actually new CAR T and medications that are being developed that actually target other things other than the BCMA.  

So then, it may come to the point where people get more than one CAR T down the road, and I think those are exciting clinical trials. Because if there’s multiple targets, and there’s multiple CAR T, maybe we can sequence them in a way that maybe we find a cure for the disease one day.  

Katherine Banwell:

That’s exciting.  

Dr. Brandon Blue:

It is.  

Katherine Banwell:

Dr. Blue, thank you so much for joining us. Do you have anything else you’d like to mention?  

Dr. Brandon Blue:

I just want people to know that it’s okay to get a second opinion. I think that regardless of what’s happening in your care, sometimes it’s always good just to have someone, especially someone who’s what they call a myeloma specialist, to review your case, and just make sure that you’re on the right road, and that things are going well for you. So, it’s something that I would recommend for anyone to do. 

How Is Bispecific Antibody Therapy Changing Myeloma Care?

How Is Bispecific Antibody Therapy Changing Myeloma Care? from Patient Empowerment Network on Vimeo.

How does bispecific antibody therapy work? Dr. Brandon Blue explains the benefits of bispecific antibody therapy and how this treatment may be quicker to access for patients.

Dr. Brandon Blue is Assistant Member and Clinical Instructor in the Department of Malignant Hematology at Moffitt Cancer Center in Tampa, FL. Learn more about Dr. Brandon Blue.

See More from Evolve Myeloma

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Transcript:

Katherine Banwell:

Dr. Blue, can you tell us about bispecific antibody therapy for myeloma?  

Dr. Brandon Blue:

Yeah. So, bispecific is basically similar to CAR T in a way that it uses the body’s immune system. But the big difference with bispecific therapy is that not only does it attack the plasma cell, which is the typical cancer cell in multiple myeloma, but it also brings the cancer cell to the actual immune system. 

So, it’s one thing to kind of go after the cancer cell, it’s another thing to say, “Hey, here’s the immune system, here’s the cancer cell. Let me figure out a way to marry the two of them together so that the fighting really takes place in real time.” And luckily, we’ve seen some really fantastic results.  

Katherine Banwell:

So, how is this therapy changing myeloma care? 

Dr. Brandon Blue:

The big thing about bispecifics is that they’re a much quicker process than CAR T.  

Right now, one of the things that is slowing up the CAR T process is something called manufacturing time. And so, even if someone wanted CAR T today, they may not be able to get it for six to eight weeks due to that manufacturing time. However, these bispecific are typically readily available so that if you need them today, probably by tomorrow, the next day, they can be infused. And so, that’s a much quicker time, and that allows patients to get the treatment that they need. 

Because, again, these are patients who, unfortunately, disease has not responded to a lot of the more traditional therapies. So, they need help, and sometimes they need help quickly. 

Accessing Myeloma CAR T-Cell Therapy Clinical Trials

Accessing Myeloma CAR T-Cell Therapy Clinical Trials from Patient Empowerment Network on Vimeo.

How has CAR T-cell therapy changed the landscape of myeloma care? Dr. Brandon Blue shares how this therapy has been a “game changer” in myeloma care, and how clinical trials for newer CAR T-cell therapies are advancing care and access for patients.

Dr. Brandon Blue is Assistant Member and Clinical Instructor in the Department of Malignant Hematology at Moffitt Cancer Center in Tampa, FL. Learn more about Dr. Brandon Blue.

See More from Evolve Myeloma

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Transcript:

Katherine Banwell:

Dr. Blue, we know that the approved CAR T-cell therapies are for patients who have already undergone several lines of treatment. How has this therapy revolutionized care for myeloma patients?  

Dr. Brandon Blue:

Yeah. So, CAR T is really a game changer when it comes to multiple myeloma. I’ll tell you that previously people have seen a lot of the best medicines that we have, and unfortunately for a good percentage of people the disease just becomes what we call refractory.  

And unfortunately, despite us giving them the best medicines, the disease still likes to survive. So, we had to think of something of what can still kill cancer, but may not be the traditional chemotherapy that people may think of? So, we say, “Well, let’s come up with CAR T because it’s a way to actually use the body’s own immune system to fight off those cancer cells.” And for myeloma it really has shown a lot of progress. And one of the things that we know now is that not only do we have one, but we have two products, and maybe even a third coming down the pipeline because there’s more and more of this CAR T becoming available. 

And that’s better, and better for patients.  

Katherine Banwell:

Absolutely. That’s great news. For patients who are recently diagnosed, Dr. Blue, is there any chance of accessing this treatment sooner? Maybe through clinical trials. 

Dr. Brandon Blue:

Yeah. One of the biggest clinical trials that I think that people are excited about is trying to challenge something that we’ve been doing since the 1980s, which is stem cell transplant.  

So, typically, when a person get diagnosed with multiple myeloma, especially newly diagnosed, stem cell transplant is typically part of the treatment plan. But now there’s clinical trials that are coming out where we challenge instead of maybe a patient going to stem cell transplant, maybe they might do CAR T instead. And we’re trying to figure out can something that we’ve been doing since the ‘80s be un-throned as the best standard practice? And so, I think that’s something that people are really excited about, that’s something I’m excited about. 

And it gives people who are newly diagnosed a chance to get some of this novel therapy.   

Katherine Banwell:

I have a follow-up question about the clinical trials, you mentioned that there is one going on. Where is it taking place?  

Dr. Brandon Blue:

Yeah. So, it’s actually a multi-center study. And so, hopefully, we hope to have Moffit Cancer Center involved in that clinical trial, but it’s multiple different sites really all over the world because I think this is a question that everybody’s really excited about. Again, like I said, transplant has been happening since 1980s, and so for some treatment to come along to potentially challenge that, I think people are excited about a new contender. And we’ve already seen the progress that CAR T has already made. 

And so, the big question is how well will it work when someone is newly diagnosed before their body has really seen all the extra treatments that are there? Will it work even better?  

We’re very hopeful, and we’re very optimistic. 

Katherine Banwell:

Where can people find out about this particular clinical trial and other clinical trials?  

Dr. Brandon Blue:

Yeah. So, I tell people there’s so many different websites and resources. One of the main ones that is very readily accessible is clinicaltrials.gov, is very kind of easy, and intuitive. Typically, what you can do at clinicaltrials.gov is you can literally kind of just type in your disease process, and then they’ll tell you if it’s newly diagnosed, or relapsed. There’s also a place called SparkCures. SparkCures is fantastic organization that really tries to focus people, and get them matched with clinical trials, which is fantastic.  

There’s also HealthTree. HealthTree not only helps people from a clinical trial standpoint, but they also have patient support programs because nobody wants to be in the fight for cancer by themselves. The American Cancer Society does a fantastic job, as well as Leukemia & Lymphoma Society. 

The International Myeloma Foundation, or the IMF, and then the MMRF, the Multiple Myeloma Research Foundation. And there’s many more, but those are some of the top ones that we readily use that have a lot of information. And some of them have not only information for the patient, but also information for the family, and the caregivers. Because again, when someone gets diagnosed with cancer it doesn’t just affect the person, it affects the whole family.  

How Are Myeloma Patients in Remission Monitored?

How Are Myeloma Patients in Remission Monitored? from Patient Empowerment Network on Vimeo.

How often should testing be administered when myeloma is in remission? Dr. Brandon Blue discusses how patients in remission are monitored and when a bone marrow biopsy may be required.

Dr. Brandon Blue is Assistant Member and Clinical Instructor in the Department of Malignant Hematology at Moffitt Cancer Center in Tampa, FL. Learn more about Dr. Brandon Blue.

See More From INSIST! Myeloma

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Transcript:

Katherine Banwell:

Dr. Blue, how often should bone marrow biopsy be performed in the years following a stem cell transplant?  

Dr. Brandon Blue:

So, typically following stem cell transplant patients are kind of switched to what we call maintenance therapy.  

Meaning that the disease is typically under control after transplant, and our job right now is to kind of put the lid on the disease and keep that lid on so that the disease doesn’t kind of bubble over. And likely, people are on that maintenance therapy for three, four, sometimes even five years, or more. And so, sometimes when the disease is very stagnant or very stable, and people are on maintenance therapy, there may not be a need for multiple repeated bone marrow biopsies. 

Because the disease may just be in a kind of dormant or remission stage. However, at the first sign that we see that things are changing, we see that unfortunately the disease may be starting to relapse, or maybe even there’s a new pain, or things happening that just need further investigation, I think a bone marrow biopsy would be very warranted at that time.  

Katherine Banwell:

Okay. So, when patients are in a kind of remission stage you just monitor them. Do you continue to do bloodwork, and test their urine, and so on?  

Dr. Brandon Blue:

Blood, urine, imaging. Blood, urine imaging. 

Katherine Banwell:

Yeah. Blood, urine, imaging.   

Dr. Brandon Blue:

Yup. Those would be the best ways to follow it. Of course, the gold standard would be a bone marrow biopsy, but typically what happens is that the blood, the urine, and the imaging typically reflect what’s happening in the bone marrow. It’d be sometimes very unlikely for a patient’s bloodwork to be normal, but then the bone marrow to be ridden with cancer. Typically, it doesn’t work that way. There are some unique circumstances where bone marrow biopsies are needed in people who have something called non-secretory myeloma, but that’s a very small percentage. 

What Testing Is Appropriate for People With Smoldering Myeloma?

What Testing Is Appropriate for People With Smoldering Myeloma? from Patient Empowerment Network on Vimeo.

How is smoldering myeloma monitored? Myeloma expert Dr. Brandon Blue explains why treatment is not necessary and the types of tests that are used to monitor this diagnosis.

Dr. Brandon Blue is Assistant Member and Clinical Instructor in the Department of Malignant Hematology at Moffitt Cancer Center in Tampa, FL. Learn more about Dr. Brandon Blue.

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Questions and Considerations When Making Myeloma Treatment Decisions


Transcript:

Katherine Banwell:

What testing and treatments are appropriate for smoldering myeloma? And first, could you define smoldering myeloma for us?  

Dr. Brandon Blue:

Yeah. So, one of the things that makes multiple myeloma kind of a very difficult disease is that it can attack people’s bones.  

When people have the smoldering myeloma, they have none of those bone disease. When people typically have multiple myeloma it can affect their kidneys, and actually cause low blood counts called anemia.  

When people have smoldering, they don’t have any of those classic features, however, they still may have a burden of cancer cells. Anywhere from 10 to 59 percent of plasma cells is really still considered this smoldering, or inactive cancer, but it’s still cancer. And so, we know that roughly in the first five years about 10 percent of those patients will go from this inactive smoldering stage to the active myeloma and required treatment. 

A lot of times we do observation for those patients to kind of make sure that they get the treatment when they need it. There is some studies to show that some people do get treatment during the smoldering stage, but for a lot of times observation is needing because sometimes it can be several years really before someone would need treatment. 

And a lot of times we try not to expose people to treatment if it’s really not necessary at the time.  

Katherine Banwell:

I see. So, it’s more of a watch and wait. 

Dr. Brandon Blue:

Exactly right. And sometimes you actually watch and wait, and then you keep watching, and waiting, and sometimes people never develop the active disease. And so, especially in those patients, you would’ve exposed them to chemotherapy that they really never needed. And one thing that I always tell my patients is that it’s important to know that you have cancer cells, but it’s also important for us to follow it. We are here to help and support you, right? And having cancer in your body sometimes can be very anxiety-provoking. 

And so, for a lot of patients who are in that category, sometimes we offer them clinical trials that we have available to say, “Hey, this is something that we’re trying to explore and learn more about smoldering myeloma. And maybe this is something that may benefit you.” 

Katherine Banwell:

Yeah. Can a patient with smoldering myeloma be monitored through blood work? Is that something you would do?  

Dr. Brandon Blue:

Yeah. So, typically what we try to do because the disease is so multifaceted, meaning that myeloma is not the same for each person. So, the blood is a fantastic way of following the disease, and monitoring, however, we need to do a little bit more than that. We also like to collect urine because, again, multiple myeloma can affect people’s kidneys. And the good thing about urine is that we flush it down the toilet all the time, but there’s so much information that gets flushed down that we really can learn about the disease and learn about the person by following the urine over time. 

The next thing is that we can follow imaging because, again, multiple myeloma can affect people’s bones. Sometimes if you get aches, and pains, we don’t know if that’s the muscle, we don’t know if that’s a ligament, we don’t know if that’s the bone. Pain is such a subjective thing, so we need to follow people, and have them be monitored with imaging. So, I think that combination of blood, urine, and imaging would be the best thing to do. 

Empowering Providers to Explain Lung Cancer Biomarker Testing to Patients

Empowering Providers to Explain Lung Cancer Biomarker Testing to Patients from Patient Empowerment Network on Vimeo

Non-small cell lung cancer (NSCLC) clinician Dr. Jhanelle Gray from Moffitt Cancer Center has some knowledge to share. NSCLC expert Dr. Gray discusses her experience in biomarker testing and personalized combination therapeutics.

Watch to learn some of the best practices Dr. Gray has developed in treating and empowering NSCLC patients toward more culturally sensitive and equitable care.

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Transcript:

Dr. Jhanelle Gray:

My name is Dr. Jhanelle Gray, and I’m a clinical investigator focused on helping patients with non-small cell lung cancer (NSCLC). My research has concentrated on evaluating novel molecular markers and developing cutting-edge, personalized combination therapeutics to improve the outcomes of patients with non-small cell lung cancer.

Biomarker testing is so important to explain to patients, and I’ve learned some best practices along the way. I think it’s very important that we take the time to think about patients when we’re making decisions, and to be open to the idea that people think differently. We all come from different backgrounds, we have different experiences. I think trying to have empathy, taking a pause, and intentionally being an active listener are very important when a patient is sitting in front of you.

We need to be careful when we use the words manage or managing. We’re not managing the patient, what we’re doing is managing the therapies, we’re helping to manage the symptoms that patients experience. We also want to take time to slow down, look at what is happening in the room as you’re talking, as the patient’s talking to you…

Language is something that is critically important. When you’re delivering negative news, people will remember about 10 percent of what you say. There’s a lot going on, so patience is very important, using words that can resonate and land, and being open to questions are key. Making sure that, again, that you don’t judge and remember that you’re delivering a lot of information. We also must share the news in a culturally sensitive way and understand the dynamics. Again, it’s reading  the room.

Understand that this is an individual conversation. When the next patient comes in, you’re going to tailor the conversation to that individual. When the next patient comes in, you’re going to tailor the conversation to that individual. 

There are also some things to keep in mind about management. Patients do not fail therapies, our therapies fail our patients. And even when you’re talking to patients, you need to let them know, this is one of the things that can occur. While the intention might be to prepare them for what can happen in the future, you may not realize during the conversation that this could come across as blaming. 

Training is one of the ways that you can move this forward and also just pay attention, be thoughtful, and make sure that people feel as comfortable as possible when you need to deliver difficult news. Another time this becomes very important, is when you need to change therapies.

For the patients, they had gotten accustomed to a therapy, they knew how to take care of themselves, how to work with their team, and had familiarity with the side effects. And now you’re going to pivot treatments. To patients, this often feels like starting over from scratch. Thus, I think there are many sensitivities that must be considered, and we need to be thoughtful at those particular times.

I think that all providers should undergo cultural competency training. This can drive impact and help move us to the next level of reaching for that equity and honestly, lessening the inequities in healthcare.

Some things I’ve learned about communicating biomarker results with patients include:

  • Seeing patients as human beings first and the cancer as second.
  • Pause and think about what you’re saying and how you’re saying it.
  • Take your time and don’t rush the appointment.
  • Get to know your patient as a person.

For me, these actions are key to empowering my patients.


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Advanced Non-Melanoma Skin Cancer Treatment Decisions: What’s Right for You?

Advanced Non-Melanoma Skin Cancer Treatment Decisions: What’s Right for You? from Patient Empowerment Network on Vimeo.

When considering an advanced non-melanoma skin cancer treatment approach, what helps determine the best treatment for YOU? Dr. Vernon Sondak discusses key treatment decision factors, emerging research, and shares tips for collaborating with your healthcare team.

Dr. Vernon Sondak is the Chair of the Department of Cutaneous Oncology at H. Lee Moffitt Cancer Center and Research Institute. Learn more about Dr. Sondak, here.
 

Katherine:                  

Hello and welcome. I’m Katherine Banwell, your host for today’s webinar. In this program we’re going to help you learn more about advanced non-melanoma skin cancer, what it is, and how it’s treated. And we’ll share tools to help you work with your health care team, to access the best care.

Before we meet our guest, let’s review a few important details. The reminder email you received about this program contains a link to program materials. If you haven’t already, click that link to access information to follow along during this webinar. At the end of this program, you’ll receive a link to a program survey. Please take a moment to provide feedback about your experience today, in order to help us plan future webinars.

And finally, before we get into the discussion, please remember that this program is not a substitute for seeking medical advice. Please refer to your health care team about what might be best for you.

Joining us today is Dr. Vernon Sondak. Dr. Sondak, welcome. Would you please introduce yourself?

Dr. Sondak:                

Thank you and I’m glad to be here. I’m Vern Sondak. I’m the chair of the Department of Cutaneous Oncology at Moffitt Cancer Center in Tampa, Florida. Cutaneous oncology is, of course, the diagnosis and treatment of all forms of cancer that start on the skin. I am a cancer surgeon by training, but pretty much do only skin cancers, melanoma, and all the other types of skin cancer that we’re going to be talking about today.

Katherine:                  

Excellent. Thank you for taking the time out of your busy schedule to join us. Before we learn more about advanced non-melanoma skin cancer, let’s start with the question that’s on the minds of many patients. Is the COVID vaccine safe and effective for advanced non-melanoma skin cancer patients?

Dr. Sondak:                

I’ve spent my entire career studying the human immune system and vaccines for cancer. The COVID vaccine is the safest, most effective vaccine we have ever seen. It is like the difference between the Wright brothers airplane and the Apollo spaceships in terms of sophistication.

It is a vaccine that has gotten politicized and has gotten tangled up in all kinds of stuff. But again, it is the safest, most effective vaccine we’ve ever seen. I highly recommend it for all of our patients. I believe that all of our patients with cancer, and their family members, and their children of appropriate age should be vaccinated and boosted.

Even if you do that, as I have done, I go vaccinated, I got boosted, and I got COVID. It was milder than the usual cold I get every year before COVID. If I hadn’t been tested, I wouldn’t have even known I had it. I only get tested to avoid spreading it to family members and especially to vulnerable patients. If your immune system is weakened and it’s even more important to be vaccinated.

So, the only advice I give to my patients about the vaccine, and the vaccination specifically, is think about which arm to have it in. If you’ve got an active cancer, say in the left arm, have it in the right arm. Not because it will hurt the cancer, but because in the early days after the vaccine, you may get a little bit of swelling of the lymph nodes. We don’t want your doctor or anybody doing a CAT scan, or ultrasound, or mammogram, or any other test to accidentally think that those enlarged lymph nodes are from the cancer.

If you had the vaccine recently and are getting any type of diagnostic procedure, like a CAT scan mammogram or ultrasound of those lymph nodes, tell the team that you had a recent COVID vaccine.

Katherine:                  

That’s excellent advice. Thank you. Good to know. Let’s start with the basics Dr. Sondak. What exactly is non-melanoma skin cancer?

Dr. Sondak:                

Well, it’s a great question. Sometimes we wish there was a better term, because it obviously is defining this by what it’s not, not by what it is.

Katherine:                  

Right.

Dr. Sondak:                

Melanoma is the most prevalent of the really severe skin cancers. By severe, I mean the ones with the highest chance of spreading and dying. Each year in the United States, there are close to 10,000 deaths from melanoma every year, and about 100,000 cases of invasive melanoma.

But the other forms of skin cancer, and the most common two forms of skin cancer, are basal cell and squamous cell cancers. These two cancers alone, they are about two to three million cases a year, compared to 100,000 melanoma cases.

Katherine:                  

Wow.

Dr. Sondak:                

But probably causing fewer deaths than those 100,000 melanomas. So, there are many, many more of the skin cancers that aren’t melanoma, then there are of the skin cancers that are melanoma.

In fact, there are probably more skin cancers – just if we took basal and squamous cell cancer – there are probably more of those diagnosed every year in the United States than all other forms of cancer put together.

Katherine:                  

Wow. Wow.

Dr. Sondak:                

Now in general, these skin cancers – besides melanoma – are at a low risk of spreading, and metastasizing, and killing the person if their immune system is normal. So, they have almost gotten passed off as, “Oh, it’s just the skin cancer. It’s nothing to worry about.” But when they reach a certain size, when they get to a point where we call them advanced, then now the stakes are higher. It’s not millions of advanced cases, but it’s many tens of thousands of advanced cases in the United States. Some of them do spread and some of them can be life threatening, or even lethal.

Katherine:                  

And we are going to focus today on advanced disease. So, what makes this type of cancer considered advanced?

Dr. Sondak:                

So, this also is somewhat – I won’t say controversial. I’ll just say it’s not uniformly agreed on by everybody. Not everyone means the exact same thing or has the exact same definition in their mind when they say advanced.

It’s a little different than the stage. The staging of skin cancer is mostly based on the size. So, a small skin cancer is almost never an advanced skin cancer. By small I mean less than 2 centimeters, sometimes. Depending where. Two centimeters is just under an inch.

But 2 centimeters in the middle of your face or on the tip of your nose. That’s already a pretty big problem. So, somebody might say, “Well, that’s kind of advanced.” Yes it is. But that’s not what we’re really talking about here. We’re talking about larger tumors. Tumors that have spread deeply into the tissues, or tumors that have spread and gotten to the next stages. Stage III, meaning in the lymph nodes. Or stage IV, meaning it’s spread beyond the lymph nodes, to the lungs and beyond.  

In terms of stages, in terms of stage III and stage IV, basal and squamous cell cancers, we are talking about much fewer than 2 percent of all those skin cancers. For basal cell, way fewer. For squamous cell, slightly fewer than 2 percent of all cases ever getting to a higher stage, like stage III and stage IV.

Sometimes they can be very advanced without ever spreading to the lymph nodes or beyond because they invade down into the bone. Could be on the top your scalp and invade down into your skull bone. Can be on the cheek, and invade, and follow the track along the nerves of the face. A lot of ways that the skin cancer can become advanced without spreading. But cancers that have spread are automatically considered advanced.

Katherine:                  

Right. That helps us understand the disease and how it progresses.           

There are so many factors that come into play when making a treatment decision, including a patient’s age and overall health. So, let’s walk through the considerations when choosing therapy for advanced disease. What are the treatment goals? What does that mean and what are the goals?

Dr. Sondak:                

It’s actually really important and somewhat underrated to think about, “What’s the goal of the treatment?” I think even doctors sometimes, certainly medical students and trainees, it’s something they have to learn a lot about. Because it’s easy to memorize all the names of all the drugs and all the muscles in the body. But thinking about, “What are we really trying to accomplish here?”

The first thing we would like to accomplish, when we can, is cure the cancer. Most of the advanced skin cancers we’re talking about are still curable. We can’t say all, but most. Even in the high stages they are still potentially curable with treatment.

So, of course, if we can cure someone, we might be more aggressive with our treatment plan. More intensive with our treatment than if we’re not intending to cure them. Why wouldn’t we want to cure them? Why would we have a different intention? We’d always want to, but there are times when we say, “Gee, the standard treatments haven’t worked. Now we have to think about what other goals? We can’t cure you anymore.”

It’s pretty rare with skin cancer. But it happens. It happens with melanoma, and it happens with basal, and squamous cell cancers, but rarely.

We can’t cure you. We can help you feel better because the symptoms that this large skin cancer – this advanced skin cancer – is causing. Whether they might be bleeding, or pain, or pressure on a nerve, or whatever it might be. If we can relieve that, that’s palliation. That’s relieving symptoms. There are times we say, “We want to prevent that symptom from happening in the first place. If we don’t remove this, this is going to start bleeding, or it’s going to press on the nerves.”

So, even if we can’t cure you, we might want to treat one or more spots to prevent symptoms from occurring. Only in the most extreme, end of the line, kind of situations would we say now our goal is just comfort. We can no longer do anything to really alter the disease. When and how we make those decisions, obviously, they are challenging. But if you don’t start with that point, then you can’t get to the right treatment decision.

If you’ve got a patient who’s not curable, you want to do the least treatment to make them feel better or prevent them from feeling bad. Whereas if you’ve got a patient who is curable, you may be willing to justify much more aggressive treatment, if that’s what’s needed to cure them. 

Katherine:                  

How do patient-specific factors, like lifestyle and pre-existing conditions, impact treatment choices?

Dr. Sondak:                

It really depends, but in skin cancer it can affect them a lot.

Number one: Lifestyle. Well, how did we get skin cancers in the first place? Whether they’re melanoma, basal, squamous? Usually, the one common denominator is ultraviolet light. Got it from being out in the sun or occasionally from being in a tanning bed. Something like that. Melanomas, and to a small extent basal cell cancers, tend to be associated with brief intermittent heavy exposure, meaning sunburns. Squamous cell cancer tends to be associated with chronic cumulative years of sun exposure. I was out in the sun all my life, I fished all the time, I was a lifeguard, what have you. That’s generalization.

A lot of overlap. But the common denominator, the common theme, is ultraviolet exposure. One thing about the sun, it doesn’t just shine on one spot all the time. It shines on lots of places. So, you may have a skin cancer here, but that doesn’t mean you didn’t get sun exposure there, or here, or anywhere else.

So, lifestyle factors. One: We can’t undo the ultraviolet exposure you already had. But we can prevent it from accumulating further. So, once a person is diagnosed with skin cancer, they really need to think about protecting themselves from the sun, avoiding sun exposure, and covering their skin, and protecting their skin when they’re in the sun. Ideally, they think about it before they got skin cancer. So, they don’t get skin cancer. Or if they get it, they get a mild, minimal, non-advanced, and easily treatable case.

But we want to make sure that once a person has skin cancer, that they recognize that their lifestyle needs to change. Cigarette smoking, unbeknownst to a lot of people, is also associated to some degree with skin cancers and a lot of other big and bad medical problems. So, we would love to alter people’s lifestyle as far as smoking is concerned. Those are the couple of key lifestyle factors that we always think about.

I think the other area that is so important in deciding about treatment is the overall health of the patient, other medical conditions that they might have, and then lastly, what the patient’s own specific concerns and considerations are.

Katherine:                  

Yeah. Let’s turn now to the treatment options for advanced disease. What approaches are currently available to treat advanced non-melanoma skin cancer?

Dr. Sondak:                

First and foremost, we always think about, can this thing be entirely removed? Can we get the cancer out and cure the patient once and for all with an operation?

Most skin cancers have not yet spread to the lymph nodes or beyond, even when they’re advanced. So, it follows that if we can remove every last cancer cell from that site, we can cure that patient. That is obviously a worthwhile goal.

But these skin cancers occur in places where a big enough surgery to remove all the cancer can be a pretty deforming surgery. It’s why plastic surgeons get involved a lot. But it’s also why we try combinations of therapy to see if we can get by with less surgery, less radical surgery. Perhaps by adding radiation or adding drug treatments to shrink the cancer.

So, surgery first. Can we do it? Can we just fix this once and for all with surgery and get it done? Whether it’s Mohs, for more advanced cases, usually a general anesthesia type surgery. Often with a skin graft or other kind of plastic surgery reconstruction. Could we just get it all out and have the pathologist tell us, “This is done. This is taken care of”? It’s not a guarantee. There’s no guarantees in this business. Only in the muffler business.

But the odds are good if the pathologist tells us the margins are completely negative. If the pathologist tells us the margins are close here, or positive there, and we don’t think removal of additional tissue is wise, then we may call in the radiation oncologist and say, “Let’s give radiation.” Kill that area where there was a positive margin and give us a margin of safety around the surgery.

In the minority of cases, we say, “This is too big to even tackle with surgery – at least at first – or too widespread. So, we’re going to use drug treatments. If it shrinks, we may use radiation for surgery later. But first, drugs and let’s see what happens after that.”

So, today we have really three main categories of drug therapy. In the old days we had – and it wasn’t that long ago – we had really one category. I’d say that’s only been in the last – not even – 10 years that we’ve had multiple options. But let’s go back 10 years.

Chemotherapy. Standard chemotherapy that people think about with cancer. Hair falls out, nausea as a prominent side effect, suppressing of your immune system, suppressing of your blood counts. That form of chemotherapy was really the only drug therapy we had for advanced melanoma. I mean, advanced non-melanoma skin cancer. Advanced melanoma too could years or more ago.

Now, through progress with melanoma, we have drugs that work in the other kinds of skin cancer. Immunotherapy took the world by storm. It worked so well for melanoma that we tried it in squamous, and merkel cell, and even basal cell cancers, and also saw great results. Now immune therapy is approved in all three of those types of non-melanoma skin cancer.

But there are problems with immune therapy if you have an altered immune system. Especially if you have a kidney transplant, or liver transplant, heart transplant, and we boost your immune system, we run a serious risk of rejection. It isn’t a guarantee, and it can sometimes be managed with additional medications. But it’s something that we have to be very, very, very cautious about, is using immune therapy in someone with a transplant.

So, targeted therapy works when we have a genetic abnormality in a cancer, that we know is only in the cancer, and that we have a drug that can block. For melanoma, if it has a BRAF mutation, we have targeted therapy drugs that target the BRAF mutation.

But non-melanoma skin cancers don’t have BRAF mutations. Squamous cell cancers don’t have mutations that today we can target. Only basal cell cancer, along with melanoma, has a mutation that we can target.

But unlike melanoma – where only some melanomas have the gene mutation in BRAF – basal cells, all the cancers have a mutation in the hedgehog pathway. You can’t pretty much have a basal cell cancer without having a mutation in the hedgehog pathway. Fortunately, we have pills that inhibit that pathway that we call hedgehog inhibitors. Vismodegib, sonidegib, and these drugs are very effective at shrinking even gigantic basal cell cancers.

But the problem with targeted therapy in general, compared to immune therapy, is that the responses don’t tend to last as long. The tumor will shrink very rapidly. But some of those cancer cells figure out a way to mutate further and avoid the drugs that we were using to treat them, and eventually grow back.

Dr. Sondak:                

Let me just correct one thing I said about targeted therapy, so I don’t leave the wrong impression. I said there’s not really mutations in squamous cell cancer that can be targeted. There is one called the EGF receptor, or EGFR, that we sometimes target with a drug called cetuximab.

It’s not used as much now with immunotherapy. But it turns out there is some targeted therapy, even for squamous cell cancers. But for basal cell, is where the hedgehog inhibitors are used much more effectively than targeted therapy in most other forms of skin cancer.

Katherine:                  

Dr. Sondak, do you think a patient should consider a second opinion or consulting a specialist? If so, what would you say to them, to make them feel comfortable to do that?

Dr. Sondak:                

So, I would remind everyone – as we said earlier – advanced skin cancer is not something you can pass off. “Oh, it’s just skin cancer. Everybody gets skin cancer. It’s just minor. Just put a band aid on it.” I’ve seen people who’ve neglected these cancers for a long time, thinking they weren’t serious, or thinking that the treatments were going to be too awful, too disfiguring, or too toxic. That’s just not the case anymore.

Everyone with advanced skin cancers should have cutting edge appropriate treatment. Cutting edge doesn’t always mean brand new. It might mean the same surgery we’ve been doing for many years. Just done properly and appropriately for that patient.

So, this is a kind of cancer that usually should be treated by very experienced teams. Especially when drug treatment is needed, often when radiation is needed, and certainly when major surgery is needed. Not just the use of the drugs, but the sequence. Which drug first? Which drug second? When is surgery appropriate? When do we do the radiation?

These are sophisticated decisions, and every patient is different. So, we strongly encourage people to go to a center that has a whole panel of different specialists. And they work and talk to each other. They work with each other, work together, talk to each other, and come up with a plan for each patient. If you just go to one doctor, sometimes – an old saying – when all you have is a hammer, everything looks like a nail. There are times when somebody says, “Well, I can do radiation.” Surgeon says, “I can do surgery.” Oncologist says, “I can do chemo, or targeted therapy, or immunotherapy.”

We want them all together, saying “Yeah, but what should we do for this patient?” That’s the goal that we’re striving for. That’s when you’re going to be the most likely to get the most successful outcome.

Katherine:                  

Dr. Sondak, what would you like to leave patients with? Are you hopeful?

Dr. Sondak:                

We have seen the most dramatic progress in the treatment of these forms of cancer of the skin – melanoma, merkel cell cancer. basal and squamous cell cancers – in my lifetime. Progress I never ever thought I would see. We are not curing everybody, but we are curing a lot more people than we used to.

Yet I still see things about these forms of cancer on the internet that say, “Oh, this is really aggressive. This needs to be treated right away. Don’t wait. Don’t make me go get a second opinion. Have somebody deal with it.”

No. Time out. First thing, it’s better to do it right than to do it right away. Second thing, you don’t get a second chance to make a first impression, and if you go down the wrong treatment path, sometimes you can’t undo that. There is always time to stop and ask, “Am I doing the right thing? Is there somebody who really specializes in this that I should be seeing?”

But the most important advice at all, of course, is you’ve got to get the diagnosis made in the first place. So, that means you have to be willing to go to the doctor, to the dermatologist, to say, “Hey, this doesn’t seem right. It’s just not healing. It just keeps getting worse. What’s going on?”, and then have to be willing to follow up and go through treatments.

If you do, we are extremely optimistic. We are seeing progress, responses, cures that we never thought possible. So, there’s a lot of reason to be optimistic. It’s not always easy. There are plenty of side effects of all the treatments that we talked about. Including surgery, radiation, and all the drugs. But it’s not like it was even 10 years ago. Huge progress for people at any age. So, really, we really are optimistic.

Katherine:                  

Thank you so much for joining us today. It’s been a pleasure talking to you.

Dr. Sondak:                

Thank you for having me. Good luck with all your efforts.

Katherine:                  

Thank you and thank you to all of our partners. If you would like to watch this program again, there will be a replay available soon. You’ll receive an email when it’s ready. Don’t forget to take the survey immediately following this webinar. It will help us as we plan future programs.

To learn more about advanced non-melanoma skin cancer, and to access tools to help you become a proactive patient, visit powerfulpatients.org. I’m Katherine Banwell. Thanks for being with us today.

The Latest in MPN Research: Updates from ASH 2021

The Latest in MPN Research: Updates from ASH 2021 from Patient Empowerment Network on Vimeo.

MPN specialist, Dr. Andrew Kuykendall, shares the latest news from the 2021 American Society of Hematology (ASH) annual meeting. Dr. Kuykendall discusses the latest findings in MPN research, including an update on JAK inhibitors, advances in BET inhibitors, as well as a new therapy in development aimed at reducing phlebotomy in patients with polycythemia vera (PV).

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.

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Transcript

Katherine:

You’re joining us following the American Society of Hematology Meeting where cancer researchers came together to share their findings. Are there highlights from the meeting that patients should know about?

Dr. Kuykendall:

Yeah, absolutely. So, the meeting we just came from, the so-called ASH meeting, is really an annual meeting. Happens every December.

It’s really a chance for researchers to share their most exciting findings and really what they’ve been working on for the past few years, and certainly in the past year.

As a clinical researcher, I think I have always a keen interest in clinical trials that are going to give us some new data so we can see how things are working, but I think this is also a big meeting for pre-clinical studies for basic scientists who get to share what’s exciting in their labs. A lot of times that’ll give a preview of what’s to come maybe four, five years down the road what we’ll see on the clinical side. From the clinical side, which is more in my realm, there is certainly a few specific things to get excited about. Within the field of myeloproliferative neoplasms, we have polycythemia vera, ET – essential thrombocythemia, myelofibrosis.

And on the myelofibrosis side of things, I think we continue to get excited about just really the proliferation of drugs that are in late-stage clinical trials. This meeting was no different from that.

We started to get a little bit more clarity as far as this agent, pelabresib, which is a BET inhibitor which is being looked at really in a variety of different settings as a single agent in combination with ruxolitinib (Jakafi) and as an add-on to ruxolitinib as well.

This was another exciting need to get an update on where the data looks to be with pelabresib. Certainly, there’s an ongoing Phase III study in the up-front setting with that agent. We’re anxiously awaiting results too. Additionally, we’ve got more information regarding other JAK inhibitors that may be coming down the pipeline in the coming months to years with momelotinib and pacritinib.

Certainly, that’s always exciting to see the data come from there, especially when we get kind of further along in their trials, we start to get very isolated assessments of their data. Looking specifically at transfusion rates and the efficacy within the subpopulations that have unmet need. And so, I think that that’s always exciting.

I think polycythemia vera – this is a really big meeting for polycythemia vera. We obviously know that ropeginterferon (Besremi) just got FDA-approved in November.

We also started to see the updated data with rusfertide, or PTG-300, which is a hepcidin memetic that aims to reduce phlebotomy rates in patients that are requiring a ton of phlebotomies which, as we know, can be very impactful on quality of life having to get recurrent phlebotomies.

I think that those were the really big highlights, and the take-aways from this is really we are starting to see these agents move into the late-stage clinical trials.

Expert Advice for AML Patients When Making Treatment Choices

Expert Advice for AML Patients When Making Treatment Choices from Patient Empowerment Network on Vimeo.

What are key factors to consider for acute myeloid leukemia (AML) patients when making treatment decisions? Dr. David Sallman reviews important considerations and their impact on treatment choices, and shares questions patients should ask their doctor to receive optimal care. 

Dr. David Sallman is an Assistant Member in the Department of Malignant Hematology at Moffitt Cancer Center where he specializes in myelodysplastic syndromes (MDS), acute myeloid leukemia (AML) and myeloproliferative neoplasms (MPN). Learn more about Dr. Sallman, here.

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Transcript:

Katherine:

When making a treatment choice, what are three key considerations for AML patients?

Dr. Sallman:

Yeah, so I think the initial probably two main questions are is the patient fit or non-fit, and that’s really an evolving definition. I think historically, we had this magical age if you’re less than 60 or less than 65 years of age, but we’ve really gone past that significantly. So, does a patient have significant medical problems, decreased performance status that we would not think about intensive therapy is one of the main questions. I think what feeds into that. And the other big question is what is the underlying mutations that the patient has which really gives us a prognostic risk from a disease perspective.

With certain mutations and subgroups being much more sensitive to intensive chemotherapy and other groups really where that option is poor irrespective of age. So, I think the most important thing is how does the patient look, what is their fitness level, and what are the underlying cytogenetic and molecular changes that impact their disease.

I think third, of course, is really involving the patient in their preferences, because I think some of these can really be a decision between several options.

Katherine:

What’s the role of the patient in making treatment decisions?

Dr. Sallman:

Yeah, the patient has to be central. I’m really hoping that we’ve moved a long way from the paternalistic practices in the past.

I think there are still many instances where there’s sort of a clear best option from a medical perspective, but there’s a lot of social logistics. If you’re getting intensive therapy, as an example, you’re going to be in the hospital four to five weeks, what’s your support system? What financial, other impact factors, all of these things come into play. I think it’s a tough group. I think the patients that are, let’s say, 60 to 70, because responses are somewhat similar across non-intensive and intensive options, I think there’s the question of is the goal long-term, is the goal quality of life, and I think all of those really are impactful.

I think it can be very challenging to go through all of the specific numbers and how a patient comprehends that or not, but really trying to draw out is their goal long-term, is their goal quality of life, give them the pros and cons of the potential options in that setting, and then real-time discuss that as we go. I think when they have that buy-in from their goals, it’s important.

These are complicated regimens and patient compliance and follow-up and all that are really critical to the overall safety and good outcomes of these patients.

Katherine:

Are there questions that patients should ask in their proposed treatment plan?

Dr. Sallman:

Yeah. I think it’s always important to discuss what options. I think any time there’s a one-option, if there is a one-option, why? Maybe because standard of care in this group is so good that it’s not really reasonable to necessarily offer a main alternative regimen. I think it’s important to understand as much of the disease as possible. If you’re choosing this regimen, why are you doing it? I think asking about the mutations is important, although that’s a very complicated thing to explain. Some patients like it and some patients don’t, and I think you have to do that in your team-based relationship.

I think always asking about clinical trials is an important question to ask. Should they be getting a second opinion? These are overall very rare diseases, and we highly favor an initial consultation at an academic center that specializes in this. I’d say a majority of my patients are ultimately treated in the community. But especially given that the regimens are becoming much more complicated, the intensity of watching their counts, managing side effects, titrating medications, it’s really great to have a team-based model between academic and community centers and that can’t really ever happen if they never come to us. As much as possible for that to occur I think is important as well.

How Molecular Testing Has Transformed AML Treatment Options

How Molecular Testing Has Transformed AML Treatment Options from Patient Empowerment Network on Vimeo.

How has molecular testing impacted approaches to acute myeloid leukemia (AML) therapy? Dr. David Sallman explains how molecular testing has transformed AML care, including a discussion of risk assessment and the role of next-generation sequencing (NGS) in tailoring care for each patient. 

Dr. David Sallman is an Assistant Member in the Department of Malignant Hematology at Moffitt Cancer Center where he specializes in myelodysplastic syndromes (MDS), acute myeloid leukemia (AML) and myeloproliferative neoplasms (MPN). Learn more about Dr. Sallman, here.

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Transcript:

Katherine:

How has molecular testing changed the landscape of therapy for AML?

Dr. Sallman:

Yeah, it’s really transformed it, and it’s really a constantly evolving paradigm. We have updated classifications; most people utilizing the ELN system.

So, based on both cytogenetic and molecular factors, you can ultimately go into good risk, intermediate risk, adverse risk. In general, for fit patients for good risk, we focus on curative intent, ideally with chemotherapy alone. For intermediate and adverse, typically we’re incorporating allogeneic stem cell transplant. So, that’s one of the main things that really guides treatment really from the beginning and throughout.

Then, I think really where it’s evolving is personalized therapy. So, it’s really not a one-size-fits-all treatment paradigm, it’s you have mutation A, B, you’re this age, this fitness, and we put all those things together to ideally come up with the best treatment plan for the patient.

Katherine:

Is molecular testing standard following an AML diagnosis or is this something that patients should ask for?

Dr. Sallman:

It definitely should be standard and I think the challenge is when you say the word “molecular,” it means lots of things to different people. I think in the community, as targeted medications were first approved, so this was with FLT3 inhibitors, subsequently IDH1 and IDH2 inhibitors, I think people are realizing yes, we have to send these sequencing panels, but there’s a potpourri of choices from a lot of different commercial vendors.

Really the key and one of the main messages we try to get across is you really have to assess for both FLT3 as well as really a comprehensive next-gen sequencing panel in order to cover all of the relevant genes at diagnosis and likely at other time points such as relapsed or refractory disease.

So, there’s no question, it’s standard, although unfortunately, it’s still not uncommon where the comprehensive panels are not sent and you’re left with somewhat not a complete picture for your patients. Since we’re personalizing everything, it’s really quite critical to have these data.

Katherine:

Yeah. How does inhibitor therapy work to treat AML?

Dr. Sallman:

So, you have a gene that turns on and turns off as we go, but with the mutation, it’s basically turned on all the time. Then, you can have targeted pills that basically turn it off. Most commonly this is done, there’s the active

or energy site for these different genes, and so these therapies can really specifically block that. I wouldn’t say that’s the only mechanism. There are IDH1 and IDH2 inhibitors and they’re very specific for those mutations. Each mutation may have a little bit different end biology. In general, you have mutation A, and we’re going to turn it off with drug that inhibits A.

Treatment Advances for Aging AML Patients

Treatment Advances for Aging AML Patients from Patient Empowerment Network on Vimeo.

What are the latest acute myeloid leukemia (AML) treatment advances for elderly patients? Dr. David Sallman shares details about new therapies that he’s excited about and their impact on care for all AML patient groups.

Dr. David Sallman is an Assistant Member in the Department of Malignant Hematology at Moffitt Cancer Center where he specializes in myelodysplastic syndromes (MDS), acute myeloid leukemia (AML) and myeloproliferative neoplasms (MPN). Learn more about Dr. Sallman, here.

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Transcript:

Katherine:

Okay. When it comes to AML research and emerging treatment options, what specifically are you excited about?

Dr. Sallman:

Yeah. So, I think probably the most exciting changes have really been in the overall elderly AML setting, although I think are really broadly impactful across patients.

So, the standard has been hypomethylating agents for a long time. This paradigm has recently changed with the FDA approval and now full approval of venetoclax in combination with hypomethylating agents, but we’re still talking about immediate overall survival of 14 months in the Phase III setting.

There are lots of exciting drugs, and I think this is really where the spectrum of myelodysplastic syndrome and acute myeloid leukemia comes into play.

So, I really think in elderly AML, we’re moving towards more triplet type combinations to really ideally move the field forward. That adds levels of complexity, toxicity from additional therapies, but we’re really hoping to truly move that survival curve even more.

There’s a lot of HMA, doublet, triplet combinations that are exciting and I think that’s really where the field is going.

I think at the same time in the failure setting, particularly, let’s say, in the HMA venetoclax failure setting, there’s really a lack of almost any effective therapies. We’re really hoping that novel cellular and immunotherapies will hold significant promise in this group. There are numerous trials that are being considered in this space, but I’m hopeful for it.

What AML Patients Should Know About the COVID-19 Vaccines

What AML Patients Should Know About the COVID-19 Vaccines from Patient Empowerment Network on Vimeo.

What are some key points for acute myeloid leukemia (AML) patients to understand about the COVID-19 vaccines? Dr. David Sallman shares advice for patients who are considering the COVID-19 vaccine.

Dr. David Sallman is an Assistant Member in the Department of Malignant Hematology at Moffitt Cancer Center where he specializes in myelodysplastic syndromes (MDS), acute myeloid leukemia (AML) and myeloproliferative neoplasms (MPN). Learn more about Dr. Sallman, here.

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Transcript:

Katherine:

Are the COVID-19 vaccines safe for AML patients, and how does the vaccine affect treatment, if at all?

Dr. Sallman:

Yeah, I think that’s a great question. I think it’s really a rapidly evolving day-by-day update. For example, at our center, we vaccinated a high number of patients and we’re actually in a study trying to understand what their antibody production. So, I think the question is less ‘is it safe or not safe,’ but more is it as effective or worthwhile based on patients that have low blood counts.

I think, in general, if a patient is in remission, either post-therapy or on maintenance-type therapy that has a relatively preserved white count and is it’s very reasonable to utilize it, I think we still have the caveat of is it as effective, of course we don’t know that clearly since all the large trials, these patients weren’t really included. But in general, if you’re not severely leukopenic, we are vaccinating a high percentage of patients that we’re monitoring closely, but anecdotally, we’ve not had significant different adverse events from our perspective.

Staying Updated on AML Research News: Advice From an Expert

Staying Updated on AML Research News: Advice from an Expert from Patient Empowerment Network on Vimeo.

Dr. Jeffrey Lancet, an AML expert from Moffitt Cancer Center, shares tips for sifting through research news and encourages communication with your healthcare team about what you’ve learned.

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.

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Transcript:

Katherine:      

Well, patients are often educating themselves about developing research and new treatment options. Do you have advice for patients who, when it comes to talking with their doctors about what they’ve learned?

Dr. Lancet:                   

I think it’s important for patients to speak to their doctors directly and as soon as possible as opposed to going on the internet and doing a Google search for this drug or that because every patient’s situation is unique and how to apply these new drugs is very different amongst patients.

And some patients may qualify for certain approaches and others do not. So, it’s very important to talk to your doctor about how you can individualize your treatment based upon your specific scenario. What type of mutation does a patient have, what is their level of fitness, are they potentially candidates for bone marrow transplant? Those are some of the basic questions that come up all the time to determine what is the best treatment approach.

And as we’re developing new therapies, and more of them, there will be more options for patients and a more personalized approach that can be taken that really can only be decided based upon that individual patient’s unique profile. So, it’s very important to really recognize that one size does not fit all when it comes to treatment of this disease and that certain drugs may be helpful and certain drugs may be unhelpful in that particular site.

Katherine:                   

What would you like to leave patients with today? Are you hopeful about the future of AML treatment and research?

Dr. Lancet:                   

Yes, I’m very hopeful. I think AML is a disease that is really a very diverse and complex one. It doesn’t lend itself well to huge immediate breakthrough therapies that will immediately change the landscape by double digit percentages for example. This is a disease that, again is very complex, and in which advances are made slowly but steadily. And I think we’ve seen that over the past to 5 to 10 years is that we are gradually incorporating new drugs into our treatment regimens with gradually increasing levels of success as we learn more about these drugs starting out as single agents and then beginning to combine them.

I think that we’re learning an awful lot about the molecular landscape about AML and how it impacts treatments and treatment decisions and prognoses. I think our ability now to detect what we recall measurable residual disease is very important. Also, because now we can get a grasp of how well our treatments are working and are we knocking out enough bad cells to expect good outcomes, and if we’re not, then hopefully we can intervene and kind of hit it while it’s down so to speak and use some of these new therapies to knock out what might be left over to give patients better overall long term responses and results.

So, definitely reason to be hopeful, but we have to stay patient as well. It’s difficult because it’s a, it’s a terrible disease but we have to recognize that it’s something that requires very careful research to develop the appropriate clinical trials that will have the highest chance of success.

Katherine:                   

Dr. Lancet, thanks so much for joining us today.

Dr. Lancet:                   

Thank you very much for having me. It was good to be with you and I appreciate the opportunity.

Katherine:

And thank you to our audience. I’m Katherine Banwell.