Myeloma Testing and Treatment: Insist on Better Care

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In this podcast, Charise Gleason a nurse practitioner, provides an overview of myeloma. Charise discusses necessary myeloma testing, how test results may affect treatment options, and why patients should ask questions and seek advice from their healthcare team without hesitation.

About the Guest:
Charise Gleason is a nurse practitioner specializing in myeloma and serves as the Advanced Practice Provider Chief at Winship Cancer Institute of Emory University. Learn more about Charise, here.

Don’t miss an episode and subscribe to PEN’s Empowered! Podcast wherever podcasts are available.

Genetic Testing: How do Results Impact Metastatic Breast Cancer Care?

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In this podcast, breast cancer expert Dr. Erin Roesch explains how genetic testing results could impact metastatic breast cancer care–including treatment options–and provides advice for self-advocacy.

Dr. Erin Roesch is a breast medical oncologist at Cleveland Clinic. More about this expert here.

Transcript:

Katherine:     

Welcome to Empowered, a podcast by the Patient Empowerment Network. I’m your host, Katherine Banwell.

Today, we’re talking about the role of genetic testing in metastatic breast cancer care—how results can impact treatment options and decisions. We’ll also discuss new and emerging treatment options.

Joining us Dr. Eric Roesch. Dr. Roesch, could you please introduce yourself?

Dr. Roesch:        

Sure. So, my name is Dr. Eric Roesch. I am one of the breast medical oncologists at Cleveland Clinic.

Katherine:       

Thank you. And let’s just start with the basics. So, what is metastatic breast cancer?

Dr. Roesch:  

Metastatic breast cancer refers to a cancer that began in the breast and then has spread to involve other parts of the body. Although metastatic breast cancer is likely uncurable, meaningful advances have been made in treatment over the last several years. The primary goals of treatment are to improve survival, as well as quality of life and symptoms.

Katherine:       

Dr. Roesch, when patients are first diagnosed with Metastatic breast cancer, are there misunderstanding that they have and what are some of them?

Dr. Roesch: 

I think a common misconception that I hear when patients are first diagnosed with metastatic breast cancer, is the availability of treatment options. At the initial clinic visit, I really strive to make sure patients understand that although metastatic breast cancer is unlikely curable, it is very treatable. And we have a lot of therapies, especially that have been approved in recent years, that can help patients live better and longer lives.

Katherine: 

That’s really encouraging.

As I mentioned, we’re going to talk about genetic testing, also known as molecular testing.

So, what is genetic testing exactly?

Dr. Roesch: 

Genetic testing refers to any type of testing that can help determine an individual’s genotype. Which is essentially, the DNA makeup, or DNA blueprint, that is associated with clinical manifestations of a certain disease or a specific trait. A phenotype, rather. Genetic testing can be determined for a germline, which refers to cells arising from the germ cells, which are applicable the vast majority of the body.

Or they can be selected for somatic cells, such as those found within tumors. Genetic testing can be helpful for metastatic breast cancer, as there are various drug therapies that are approved for patients found to have specific mutations. For example, if a woman is found to have a BRCA1 or 2 mutation, she may be a candidate for a medication called a PARP-Inhibitor.

Olaparib and talazoparib are both PARP-Inhibitors that are approved for patients with germline BRCA mutations and HER2 negative metastatic breast cancer.

Dr. Roesch:    

Genetic testing is administered in a couple of different ways. So, first it can be performed on blood or saliva containing cheek cells, essentially.

Testing on tumor tissue can also be used to identify additional acquired or somatic genetic changes.

Katherine: 

You mentioned HER2, what is that?

Dr. Roesch:

HER2 is a protein that’s expressed on many other cells throughout the body.

Some breast cancers are driven by, or over express this protein. And that can be helpful to identify patients that might benefit from HER2 targeted therapy.

Katherine: 

And what about BRCA1 and BRCA2, what are they?

Dr. Roesch:   

BRCA1 and BRCA2 are proteins that are involved in DNA repair in the body. And any time one of these mutations is defective, there is an error in DNA repair.

Katherine: 

So, as I understand it, genetic testing can lead to more targeted or personalized treatment. How has targeted therapy changed the landscape in treatment?

Dr. Roesch: 

Targeted therapy has definitely had an impact on metastatic breast cancer treatment. There are various therapies that are now approved for patients with a certain breast cancer subtype. As well as for those with specific mutations or protein over-expression. Some examples of these include, CDK4/6 inhibitors, BRCA mutations, PIK3CA mutations and PDL1 expression. For example, for a patient that is diagnosed with triple negative metastatic breast cancer.

It is now routine practice to evaluate PDL1 status. Which can identify whether a patient is a candidate for, and might benefit from, immunotherapy.

Katherine:

And when thinking about genetic testing for metastatic breast cancer, is the testing standard or is it something patients should ask their doctors about?

Dr. Roesch: 

I would encourage patients to have open lines of communication with their doctor. And certainly, ask about genetic testing. I think it’s important at certainly the initial visit, and subsequent visits, to always review family history, as this might change.

Here at Cleveland Clinic, we work very closely with genetic counselors. And they are always also available to help answer any additional patient questions.

Katherine:  

Let’s shift a bit to self-advocacy. When someone has been diagnosed with metastatic breast cancer, what do you feel are key steps they should take?

Dr. Roesch: 

I think there are several important things for a patient who is newly diagnosed with metastatic breast cancer to consider. First, I think it’s important to try and have open lines of communication with your oncologist and care team. It’s really important that we as providers are aware of our patient’s goals, wishes and any concerns they might have. Secondly, I would encourage patients to try and be educated and informed about your diagnosis and treatment. I think it is helpful when patients know what to expect, in terms of how they might feel after starting a certain treatment.

Including side effects to be aware of. I think it’s also helpful to understand that the treatment for metastatic breast cancer is a journey. And there likely might be changes or challenges that happen along the way. And that is where we as the oncologist and care providers come in to help explain things as they happen.

Lastly, but just as importantly, I think it’s really essential to continue to enjoy life and do the things that you like to do. Of course, always doing so in a safe fashion and always check with your physicians about any restrictions related to the type of treatment you might be on.

Katherine: 

Why is it so important for patients to partner with their physician on their care decisions?

Dr. Roesch:  

I would say it is very beneficial when patients are engaged in their own care and treatment plan. I often have patient that will come to our clinic visit and have a detailed list of questions for me, and I love this. I think it is empowering for patients to understand and be involved in the development of their treatment plan. This type of interaction also really helps to foster a relationship between patients and their oncology providers.

Katherine:  

And what about patients who don’t feel comfortable being their own advocate? Do you have any advice for them?

Dr. Roesch: 

For patients who maybe have difficulty speaking up or self-advocating, I think a strong support system can be very helpful in this case. This can also be helpful for patients who are comfortable advocating for themselves. It can be helpful to identify others who are close to you, who can help relay any concerns or issues that may arise.

There are also support groups and an entire network of resources within the cancer center that are available to our patients.

Katherine:

Thank you for joining us today, Dr. Roesch, and sharing this valuable information.

Dr. Roesch:  

Happy to be here, thank you.

Katherine:  

And, thank you to our listeners for joining us.  This has been Empowered, a podcast by the Patient Empowerment Network.

I’m Katherine Banwell.

Don’t miss an episode and subscribe to PEN’s Empowered! Podcast wherever podcasts are available.

Expert Advice: How Can AML Testing Inform Your Treatment Choices?

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What tests should follow an AML diagnosis and why? Dr. Hetty Carraway, an AML specialist from Cleveland Clinic, outlines key testing for patients with AML, how the results impact treatment choices, and provides advice on advocating for yourself, stressing the importance of including a caregiver as part of the conversation.

Dr. Hetty Carraway is Director of the Leukemia Program at Cleveland Clinic. Dr. Carraway cares for patients with acute leukemia and bone marrow failure states. Learn more about Dr. Carraway, here: https://my.clevelandclinic.org/staff/18591-hetty-carraway

Transcript:

Katherine:    

Welcome to Empowered, a podcast by the Patient Empowerment Network. I’m your host, Katherine Banwell.

Today we’ll discuss how you can be proactive by insisting on better AML care and personalized treatment options. Joining me is Dr. Hetty Carraway.  Welcome. Would you please introduce yourself?

Dr. Carraway:   

Hi. My name is Dr. Hetty Carraway. I’m one of the physicians at the Cleveland Clinic. I work as the Director of the Leukemia Program, and I spend most of my time caring for patients with acute leukemia and bone marrow failure states.

Katherine:    

Thank you. Let’s start with the basics. What essential testing should AML patients undergo following a diagnosis?

Dr. Carraway:  

This is a pretty standard workup for patients that have this diagnosis of acute leukemia.

For most of our patients we always evaluate with a peripheral blood count including a complete blood count with differential, typically a comprehensive metabolic panel, and looking at a test called a uric acid, which looks at the cell turnover and the cellular debris in terms of the burden on the kidney. We often will get a bone marrow biopsy with aspirate for patients, and in the diagnosis of leukemia typically that’s already been done.

There are tests that are sent off of that aspirate called a test for chromosomes, whether it’s comprehensive cytogenetics or FISH, for fluorescence in situ hybridization. We’re often testing using a study called NGS or next generation sequencing looking for specific mutations of genes known to be important in the pathogenesis of leukemia.

Furthermore, we often get a test called flow cytometry from that aspirate looking at the markers on top of the leukemia cells that help us to identify the blast population. So, I would say those by and large are the tests in the bone marrow biopsy that we get, which are innumerable and detailed.

They often take some time to get back, so at the time of the diagnosis patients know that they have a diagnosis of leukemia, but those additional chromosome tests or mutation testing that can take up to two weeks if not longer to get back. And so, it’s important to follow up on that information later on and say, has that testing come back? If so, how does that change any of what the decisions are moving forward?

Katherine:  

Genetic testing can often be confused with molecular testing. What’s the difference between the two, and why should patients undergo the testing?

Dr. Carraway:           

The chromosome testing and the mutational testing help us to really classify the risk in terms of the leukemia itself, whether or not that leukemia is responsive to chemotherapy alone, or if it means that there’s a higher likelihood of that leukemia not being controlled with leukemia only.

In that setting, we often then move towards transplant for curative intent in addition to the chemotherapy. The reasons to get the information is to really help us better tailor the therapy for each individual patient. That information really does help us guide not only the upfront therapy for some patients but even the long-term therapy. It can be incredibly overwhelming to have too much information at the get-go, so in some senses it’s better to have these pieces as they unfold over time.

For other patients, they want to know what exactly the plan is going to be A to Z from day one. That is of course more challenging now that it just takes time to get this information. I think what they need to know is that we’re working hard to get that information.

As soon as we get it, we don’t hold back. We reveal and share that information and come together to say, this is what this data or information means, and these are some of the choices that we either recommend that you consider, and these are the risks and benefits to those considerations.

Katherine:    

Let’s look at something that is similar to what you’ve just been talking about. How do test results impact treatment and overall care?

Dr. Carraway:   

When you asked me how come chromosome or genetic information is different than mutational information, the chromosomes can help us to figure out where patients land in terms of prognosis. That information is different than the mutational testing. Both of those pieces can help us figure that out.

The mutational test, I will tell you, does help us figure out are there targets on the leukemia that allow us to use therapy that’s directed to that mutation. The key example I’ll give is a mutation in a gene called FLT3. That particular mutation has an agent now that is F.D.A. approved called Midostaurin, and so once we know that a leukemia harbors a FLT3 mutation we often add a drug called Midostaurin to the backbone therapy that is used for patients.

Now, that’s important, and now there are more and more genes that when mutated we have novel therapies that direct against that specific tag that’s on the leukemia and helps to improve eradication of the disease or control of the disease if you will.

That’s different than the genetic information when we’re looking at chromosomal changes that may allow us to say in the rare instances of  favorable cytogenetics like a translocation of chromosome 15 and 17 consistent with ATL, the treatment for that type of leukemia,  acute promyelocytic leukemia, is very different than what we do for the majority of other leukemias. The prognosis for that leukemia is also very different. It helps to tailor the regimens, and it helps to select specific therapy that may be helpful to each individual patient.

Katherine:    

Dr. Carraway, you just mentioned FLT3. Would you tell us about the common mutations in AML and how these may impact treatment options?

Dr. Carraway:   

There’s a multitude of mutations that we’re now following in patients. The way that we follow them is by doing this next generation sequencing test at the upfront time at diagnosis.

The reason why we’re doing that is because those mutations can regress with therapy, or they can progress where you gain additional mutations that happen as the disease progresses. Even if it’s responding to therapy or as it loses response to therapy and reemerges, it may reemerge with different mutations. As a result of that, it may change what therapy we select. Our ability at this point in being to recommend exactly at what time points we are checking the next generation sequencing we’re still learning right now as to what are the key times to do that testing.

In general, most institutions are doing that next generation sequencing at the time of diagnosis, and then also for some patients before they go to bone marrow transplant and even after bone marrow transplant.

For some of those patients that unfortunately relapse, we’re also making sure to retest the next generation sequencing mutation testing to see are there new mutations that have come about that weren’t there before?

Katherine:   

I understand there’s something called IDH.

Dr. Carraway:   

You were also asking about what other mutations besides FLT3 happen in patients with AML. FLT3 is one such mutation. NPM1 is another mutation that often it frequents patients that have AML. Those two mutations happen in about 30 percent of patients with AML. There are other mutations such as DNMT3A, ASXL1, and TET2 that we typically see in patients with MDS or even a pre-leukemia state called CHIP. For other patients, we have mutations that are targetable like IDH1 or IDH2.

Those two mutations happen in probably 10 percent to 15 percent of patients diagnosed with AML. Why are those important? They’re important because we have oral medications that are pills that patients can take. In the relapse setting for many patients after induction or intensive chemotherapy, they can use these oral therapies to try and control their leukemia. These are pretty exciting.

All of these oral therapies have been approved in the last two to three years in the space of leukemia, so it’s been a game-changer in terms of identifying these mutations and then identifying drugs that target those mutations. It’s really changed the landscape for patients with AML. It’s new information, and that’s why as patients you want to hear about this so you know what questions to ask and you know, can you tell me, am I a candidate for one of these oral medications that is now available for patients with AML?

Katherine:   

What advice do you have for patients when it comes to asking for appropriate testing and speaking up in their own care?

Dr. Carraway:   

This is so important. I think patients are leery to stir the pot or be difficult. I think coming from a place of inquiry, teach me about this, that, or the other thing, help me understand this, that, or the other thing – I would like you to show me why this decision or talk with me about why this decision versus another decision might be better for me compared to somebody else.

I can’t underscore the importance of advocating for yourself and asking questions about why am I getting this drug? What are the side effects to this drug? What is my prognosis? What is different about my case versus somebody else’s situation? How do I best prepare myself in getting ready for the therapy that I’m about to go through?

Those are all important questions that patients should ask. They should certainly have people, if possible in their family be advocates for them. I welcome that, and I think that that’s a really important part of going through this type of therapy for any patient. Your physician should welcome having your involvement in that. Don’t be shy about that. It’s your health, and any investment in that the most important people in that is inclusive of you and your caregivers. They should be a welcome part of the team.

Katherine:    

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

Dr. Carraway:    

Thank you for the opportunity to be here.

Katherine:     

And thank you to our listeners for joining us for Empowered. Visit PowerfulPatients.org to access resources to help you be a proactive patient in your care decisions. I’m Katherine Banwell.

Don’t miss an episode and subscribe to PEN’s Empowered! Podcast wherever podcasts are available.

Genetic Testing: How Could Results Impact Lung Cancer Care?

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In this podcast, lung cancer experts Dr. Erin Schenk and Dr. Tejas Patil discuss the role of genetic testing results in lung cancer care—including treatment decisions—and share important advice for self-advocacy.

About the Guests:
Dr. Tejas Patil is an academic thoracic oncologist at the University of Colorado Cancer Center focused on targeted therapies and novel biomarkers in lung cancer. Learn more about Dr. Patil, here: https://www.cudoctors.com/Find_A_Doctor/Profile/24489.

Dr. Erin Schenk is an assistant professor in the division of medical oncology at the University of Colorado Anschutz Medical Center. Learn more about Dr. Schenk and her lung cancer research here: https://www.cudoctors.com/Find_A_Doctor/Profile/27915.

Don’t miss an episode and subscribe to PEN’s Empowered! Podcast wherever podcasts are available.

Myeloma Treatment Decisions: Insist on Essential Testing

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In this podcast, myeloma expert Dr. Amrita Krishnan explains the essential testing that should follow a diagnosis, how the results could impact myeloma therapy, and discusses new and emerging treatments.

Dr. Amrita Krishnan is Director of the Judy and Bernard Briskin Center for Multiple Myeloma Research at City of Hope in Duarte, CA. Learn more about Dr. Krishnan: https://www.cityofhope.org/people/krishnan-amrita.

Don’t miss an episode and subscribe to PEN’s Empowered! Podcast wherever podcasts are available.