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PODCAST: What Non-Small Cell Lung Cancer Treatment is Right for You?

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What’s the best approach for YOUR lung cancer? Dr. Isabel Preeshagul discusses the importance of engaging in your lung cancer care decisions, shares advice for working with your team to determine a treatment approach, and reviews factors that affect therapy options. Dr. Preeshagul also provides an update on the latest research and clinical trials.

Dr. Isabel Preeshagul is a thoracic medical oncologist at Memorial Sloan Kettering Cancer Center. Learn more about Dr. Preeshagul.

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Transcript:

Katherine Banwell:

Hello and welcome. I’m Katherine Banwell, your host for today’s program. Today, we’ll discuss the latest advances in non-small cell lung cancer care as part of our Insist series, which encourages patients to play an active role and insist on better care. Before we get into the discussion, please remember that this program is not a substitute for seeking medical advice. Please refer to your healthcare team about what might be best for you. Well, let’s meet our guest today. Joining me is Dr. Isabel Preeshagul. Dr. Preeshagul, it’s so good to have you with us. Thank you. Would you introduce yourself? 

Dr. Isabel Preeshagul:

Yes. Thank you so much for having me and for the very kind introduction. My name’s Isabel Preeshagul. I am a Thoracic Medical Oncologist at Memorial Sloan Kettering Cancer Center, and it is a huge honor to be here with you today. 

Katherine Banwell:

Well, we’re so glad to have you with us. I’d like to start with a question pertaining to our series title, Insist. Why is it essential for patients to collaborate with their providers on care treatment decisions? 

Dr. Isabel Preeshagul:

So, collaborating is so important, right? I always tell my patients this is not a dictatorship, right? This is a collaborative effort where I’m here to guide you, but you are the captain of the ship. 

You are the one that needs to make all of the decisions, and I’m here to make sure that the ship goes in a smooth direction, so making sure we have open lines of communication that the patients and their caregivers feel comfortable talking to me and my team and also vice versa and that we trust each other. It’s so important because we are going for a marathon, right? We’re not going for a sprint. This is a long-term relationship, whether we’re treating for cure or we’re treating you with palliative intent and it’s treatable but not curable. We’re going to be following with each other for a long time.  

Katherine Banwell:

A lung cancer healthcare team, of course, consists of a number of different providers. Would you tell us about the various members on a team? 

Dr. Isabel Preeshagul:

Sure. So, there is – there are the people that do the scheduling, that make sure that the CAT scan is scheduled, that the MRI is done, your chemo gets scheduled, all of that. The schedulers are super important and an integral part of our team.  

And then we also have our office coordinators  that answers the phone calls and passes along the messages and assists with scheduling and sort of sets expectations and is the face of the practice. Then you have an office practice nurse or an oncology practice nurse who is the doctor’s right hand, making sure that the patients get proper chemotherapy teaches, making sure that they understand about possible side effects, risks versus benefits, making sure medications are up to date, assessing symptoms.  

They are sort of the front line when it comes to any patient call they’re triaging, and they’re escalating or deescalating. That would be the office practice nurse. And then you have an advanced care practitioner, an APP. You either have a nurse practitioner or a PA that’s working with you that’s sometimes seeing patients independently, sometimes putting chemotherapy orders, you know, really serving as almost as another doctor. 

If for some reason there is something that the doctor’s not available to do, the doctor needs in a pinch, or my patients that are almost at long-term follow-up that are doing great that are just kind of coasting, I will share with my NP and make sure that they know her just as well as they know me. And sometimes there’s a fellow or there’s a resident or there’s a med student that’s part of the team as well because see one, do one, teach one. It’s really important to teach those that are coming after you and serve as mentors and really include them in part of the team and part of the decision-making. And then you have the doctor that just kind of oversees everything.  

Katherine Banwell:

Of course. How would you define treatment goals for people with lung cancer? 

Dr. Isabel Preeshagul:

So, the goal of treatment, I think, is really contingent upon someone’s stage, but it’s also contingent upon what’s important to the patient, right? So, we have patients that are stage I all the way to stage IIIC that we treat with intention to cure.

And patients that have stage IV disease, it’s treatable but not curable. So, I am very transparent with that as long as I have the information to have that discussion. With that being said, there are some patients with stage IIIdisease or stage I disease that don’t really want treatment and want to focus on quality of life. And that’s okay too. And in which case, you know, at some point, their cancer will likely progress. How quickly or when that will happen, we don’t know. Could they pass from something else? It’s possible. But you really need to talk about what’s important to the patient, because it’s not always cut and dry.  

Katherine Banwell:

As you mentioned, Dr. Preeshagul, there are several different support members on a team. What would you say to patients or even care partners who can sometimes feel like they’re bothering their healthcare team with their questions and comments? 

Dr. Isabel Preeshagul:

So, we do get that concern a lot. And I always say, “I’m here for you 24/7. And, if it’s not me, it’s someone that’s just as qualified to answer your questions no matter what.” 

“And I would rather get a phone call at 3:00 a.m. than get a phone call at 9:00 a.m., and you need to go to the hospital right now or God forbid something happened. I get a phone call from someone in the ICU that you went overnight and terrible things happened. So, I want the phone calls to come through to keep you out of the hospital and keep you from going south. So, call me.” And I never try to – I don’t try to outline contingency plans or criteria of what would warrant a call, because then you end up getting in trouble.  

I always just tell my patient, “Think about how you’re feeling now in front of me. If you’re feeling any different than how you feel at this very moment, call me.”  

Katherine Banwell:

Good advice. I’d like to turn to the clinical side of non-small cell lung cancer. What tests help you identify the type and stage of lung cancer?  

Dr. Isabel Preeshagul:

Obviously, you need a CAT scan. You need a CAT scan of the chest, abdomen, pelvis, and you need an MRI brain and a PET scan.  

Those are really the gold standards for determining clinical staging. In regards to pathologic staging, it’s really important to have tissue samplings. So, you biopsy a site of disease that’s concerning to you. If it looks like there’s only disease in the chest, you want to biopsy the site where there’s the tumor, and then you talk with your thoracic surgery or pulmonary team to determine the best way to sample the mediastinum for full staging.  

Katherine Banwell:

Why is an accurate diagnosis so important?  

Dr. Isabel Preeshagul:

So, an accurate diagnosis is so important because lung cancer is by no means black and white anymore. There are so many histologic subtypes that we are learning about. There are so many different molecular drivers that we are learning about. So, making sure you have the right diagnosis, full and next-generation sequencing testing, all of the imaging that you need could really make or break your treatment plan.  

Katherine Banwell:

Dr. Preeshagul, let’s talk about biomarker testing. How is biomarker testing for lung cancer different from hereditary genetic testing?

Dr. Isabel Preeshagul:

So, we do do hereditary genetic testing for lung cancer patients as well. So, I think let’s backtrack a little bit. When you’re doing on a patient, there’s germline mutations and there’s somatic mutations. And germline mutations are mutations that you might get from Mom and Dad that they got from their parents and so on and so forth that you could give to your children or your brother and sister or whatever. So, that’s germline testing that could be passed along.  

That would be like BRCA or any other APC gene, but we are learning more and more that there are mutations in lung cancer that do have a hereditary aspect to them. So, we are learning now that while we do somatic testing, which is to find a mutation that just spontaneously happened in your tumor all on its own, it’s really important to pair that with germline testing to make sure that there isn’t some kind of heritable mutation that’s also driving this lung cancer.  

Katherine Banwell:

You mentioned hereditary genetic testing. Should family members of people with lung cancer undergo genetic testing then just to be reassured? 

Dr. Isabel Preeshagul:

So, if there is a germline mutation, then they should – the family members should be referred to a geneticist to have that discussion.   

Katherine Banwell:

What are common lung cancer biomarkers? 

Dr. Isabel Preeshagul:

So, we have nine biomarkers within approval right now, but there are so many. There’s more than I could even talk about today. But some of the more common ones are EGFR, ALK, ROS1, MET exon 14. You have KRAS, KRAS-G12C, which is a newer one. We have NTRK. We have RET. The list goes on, HER2. I could talk for – there’s not enough time on this Zoom video to talk about all of the mutations. But there are nine mutations with approvals as of now to date, this very moment. That could change tomorrow.  

Katherine Banwell:

Of course, it could. How do biomarkers in lung cancer affect treatment options for lung cancer patients? 

Dr. Isabel Preeshagul:

So, it used to only be in stage IV, but now we are learning that biomarker testing is really important from the get-go because we have induction or neoadjuvant protocols that are looking at giving targeted therapy before patients go to surgery. 

We know that there’s FDA approval for patients to get targeted therapy after surgery, and there’s a survival advantage there. So, make sure that you have next-generation sequencing testing regardless of your stage.  

Katherine Banwell:

Okay. That’s good advice. So, we’ve heard how testing and a patient’s individual disease can lead to more targeted options. And you just mentioned targeted therapies. How do they work? 

Dr. Isabel Preeshagul:

So, there’s many different targeted therapies that we have. Some of given as an infusion. For HER2, for example, we have TDXD, and we have T-DM1. TDXD is the only drug that’s FDA-approved in this setting. There are clinical trials looking at T-DM1. For EGFR Exon 20, we have another infusional drug called amivantamab (Rybrevant). For EGFR Exon 19 and Exon 21, we have a pill called osimertinib (Tagrisso). For KRAS, there’s a pill. For most of the driver alterations, it’s a pill, but some of them it does require infusional therapy. 

But these are therapies that are targeted at the cells that harbor that mutation.  

Katherine Banwell:

Let’s turn to immunotherapy. What is it, and how does it work? 

Dr. Isabel Preeshagul:

So, immunotherapy is basically teaching your body to recognize cancer as foreign. So, when you have – I always kind of use this hand model. So, basically, a normal cell has, let’s say, three prongs. And then sometimes what happens is cancer will grow a marker called PD-L1 that makes it hide from the immune system. So, the body thinks that this is a normal cell. So, what immunotherapy does is it comes up and it sort of puts a cap on that PD-L1 so that the cell looks foreign again and the body can attack that cell and get rid of it. So, it’s almost like ramping up your immune system to recognize that marker and get rid of that cell. 

Katherine Banwell:

What is the regimen for immunotherapy, and how often is treatment administered? 

Dr. Isabel Preeshagul:

So, immunotherapy is approved in the neoadjuvant setting, which means before chemotherapy. It’s approved after chemotherapy, and it’s approved in the stage IV setting. There are many different regimens and many different dosings and many different drugs. But it’s typically given in your veins, either once every three weeks or once every four weeks for a certain amount of time. If it’s given in a curative setting and it’s given indefinitely or until there’s disease progression or intolerance in the stage IV setting.  

Katherine Banwell:

Okay. Let’s touch upon the side effects of these types of treatment. You’ve mentioned that there are so many, but what are some of the major side effects, and how are they managed? 

Dr. Isabel Preeshagul:

Side effects of immunotherapy can include pneumonitis, which is inflammation of the lungs, any kind of endocrinopathy like issues with your thyroid, issues with your pancreas like diabetes.  

It can cause colitis, which is diarrhea, inflammation of the colon, hepatitis, inflammation of the liver. It can cause cerebritis, inflammation of the brain. It can cause arthritis or arthralgias, inflammation of the bones. And it can also cause rash and fatigue. 

Typically, if it’s the thyroid, it’s managed with thyroid replacement hormone or a drug that would calm down the thyroid if it’s overactive. Pneumonitis is steroids. Hepatitis is sometimes treated with steroids. Colitis, steroids typically. Steroids usually come somewhere in there, usually not with the endocrinopathies, but the other itis’s, it’s typically – we start with steroids and go up from there. And the goal is to really recognize these toxicities before they become a problem and just at the glimmer of them just starting.  

Katherine Banwell:

So, would you consider these treatments to be personalized medicine then? 

Dr. Isabel Preeshagul:

So, it’s personalized in the sense that if someone has a high PD-L1 expression, there may be some data to demonstrate that they may benefit from immunotherapy or have a response. If someone can’t tolerate chemotherapy or is not interested in chemotherapy or has other reasons that may preclude them from getting it, it might be reasonable. So, in that sense, it is considered personalized.  

Katherine Banwell:

How would you define personalized medicine? 

Dr. Isabel Preeshagul:

To me, personalized medicine takes into account the biologic makeup of a patient’s disease like if they have a mutation and what their PD-L1 status is, what the histologic makeup of it. What’s their stage? And then, on the other hand, what’s important to that patient? If they’re a tailor, you want to make sure you’re not giving them a medication that’s going to cause neuropathy, so they can’t use their hands.  

If they enjoy playing the harp or the piano, same thing. If their goal is to continue to run marathons, you may want to avoid something that’s going to cause inflammation of the lungs and risk them for pneumonitis. Tailoring to make sure that the treatment is part of their life but does not become their life. 

Katherine Banwell:

If the test results don’t reveal one of the biomarkers you’ve been talking about, what other treatments are available?  

Dr. Isabel Preeshagul:

So, if I don’t have an FDA approval, then sometimes we look to see if there is a clinical trial in our early phase drug development program, and we talk about a clinical trial. If there’s no clinical trial and I don’t have an FDA approval, then we have to talk about what options are considered standard of care and how to make that work into the patient’s lifestyle.  

Katherine Banwell:

What about surgery? When is it used?  

Dr. Isabel Preeshagul:

Surgery is typically used in the curative setting with early-stage disease. We’re really trying to give patients some kind of chemotherapy or some kind of treatment before they go to surgery. It’s shown to improve outcomes. It just gives us a en vivo view of how the tumor will respond to the treatment. So, we typically use surgery in the curative setting. And, at times, it’s appropriate to use surgery for a metastasectomy when you have one little site that’s growing. Sometimes after a tumor board discussion, it might be reasonable to resect that area.  

Katherine Banwell:

Is radiation still used? 

Dr. Isabel Preeshagul:

Same thing. It can be used in the curative setting, typically for patients with stage IIIB or stage IIIC disease and combined with chemotherapy patients that are not considered surgical candidates, or it’s used in the palliative setting when patients have painful metastases. 

Katherine Banwell:

Would you define the B and C? You’ve mentioned that a couple of times.  

Dr. Isabel Preeshagul:

Yeah. 

Katherine Banwell:

We’re used to hearing Stage 1, 2, 3, 4. But what’s a stage IIIB and a stage IIIC? 

Dr. Isabel Preeshagul:

Yeah. Sure. Sure. So, it does get a little bit into the weeds here about the size of the tumor and the amount of lymph nodes and location of the lymph nodes. But basically, stage IIIA is considered resectable. That means – that could be the size of the tumor with no lymph nodes, or it could be a smaller tumor with a lymph node on the same side as the disease. Stage IIIB would be a lymph node right underneath the windpipe at the station 7. And stage IIIB also includes lymph nodes that have crossed over to the contralateral side. And stage IIIC would be lymph nodes that are maybe up at the contralateral supraclavicular space. 

Katherine Banwell:

Okay. Do treatment options change if the lung cancer returns? 

Dr. Isabel Preeshagul:

Yes, they do change depending on if this is the same tumor type that’s come back. It’s typically a different treatment algorithm, yeah.   

Katherine Banwell:

Okay. And should biomarker testing be done again if a relapse occurs? 

Dr. Isabel Preeshagul:

100 percent. Because it guides everything about a patient’s treatment. It’s super important.  

Katherine Banwell:

Okay. What are you excited about right now in lung cancer research? 

Dr. Isabel Preeshagul:

I am excited and overwhelmed by the fact that we have so many approvals and so much exciting data that was just presented at ASCO and World Lung and ESMO that it’s next to impossible to keep up. And I’m happy that we have that problem, and I’m happy that the patients have – there’s a spotlight on lung cancer when we were in the shadows. And now, I think we have the spotlight. 

And all of these approvals, you know, with it being Lung Cancer Awareness Month as well, I think is just so important. Just to make sure that we get the knowledge of these new approvals out there though, that is another struggle. 

Katherine Banwell:

Well, are there any current clinical trials that look promising to you? 

Dr. Isabel Preeshagul:

Yeah, I think there are many clinical trials. In the induction setting, there was some data that was just presented on ALINA looking at adjuvant alectinib (Alecensa). We just had a – we have approval for adjuvant osimertinib (Tagrisso) and the ADAURA trial.  

But we are learning more and more that as these targeted therapies have approval in stage IV, we’re trialing them in stage III, and then we’re going to trial them in earlier stages and earlier settings. So, this has been the pattern of how drugs get approved. So, yes, there’s lots of exciting data coming through. 

Katherine Banwell:

That’s excellent. Can you talk about antibody drug conjugates and where they fit into lung cancer care? 

Dr. Isabel Preeshagul:

Yeah. That’s a great question. I don’t think anyone knows the answer as to where they fit in just yet. 

We have probably over 300 antibody drug conjugates that are in development right now. And one of the more common ones that we use is trastuzumab deruxtecan (Enhertu), or TDXD, which is used in patients that harbor HER2 alterations in the stage IV lung cancer setting. It is basically almost like a Trojan horse. So, you have this antibody.  

It’s typically IgG1, immunoglobulin. And then you have a linker, and then at the end of that linker is the warhead or the chemotherapy agent. So, the antibody comes in towards the cancer cell looking very innocent. It binds to the cancer cell. And, once it binds, then everyone inside the Trojan horse or this warhead rush into the cell and get to do its damage. So, it’s a totally different mechanism. We’re trying to outsmart some of the bypass mechanisms that cancer cells develop. And this may be the new wave, but stay tuned, more to come.  

Katherine Banwell:

Right. So, it’s promising.  How can patients find out more about current clinical trials? 

Dr. Isabel Preeshagul:

So, you can always ask your healthcare practitioner if there are any clinical trials at the institution that you’re at, but clinicaltrials.gov has all the clinical trials that are available nationally and internationally.  

You just type in your disease type. You can type in a couple keywords, EGFR maybe or ROS1 or stage IV, something along those lines, and then it should populate a list of clinical trials and what institutions have them open, if they’re still accruing or if they’re not, and a contact on that trial.  

Katherine Banwell:

If a patient is interested in a clinical trial, what kinds of questions should they be asking their healthcare about the trial? 

Dr. Isabel Preeshagul:

So, the first question to ask is, “Do we have any clinical trials that are appropriate for me?” If the answer is yes, “Are they appropriate for me now, or are they appropriate for me if what I’m on right now is not working?” 

So, trying to figure out where that will be, and if they are appropriate for you now, how can I get evaluated, and how can we get things underway? 

Katherine Banwell:

Yeah. What would you say to patients who are interested in participating in a clinical trial, but they’re nervous about it?

Dr. Isabel Preeshagul:

I think one thing that I love about being on a clinical trial is that there are more eyes are on you, because we are looking to get something approved, and we are just watching every single little granular detail. In a way, it’s almost like you’re being more micromanaged than if you were on standard of care because of just how many stops and checks there are, how many eyes are looking at your labs after the doctor and the nurse and the nurse practitioner, and the fellow take a look at everything. It’s 10 other people. So, it’s almost like it’s extra safe because of all of that. It’s exciting because you are hopefully getting tomorrow’s treatment today, right? 

You’re trailblazing the way for other people after you. So, I think it’s exciting, but, of course, it’s nerve-wracking. It’s something new. You don’t know if it’s going to work. But I have to believe that the way that clinical trials are designed now and the clinical trials that we choose to open here, we really hope are going to be pushing the space forward. 

Katherine Banwell:

Yeah. I’d like to get to a few questions that we received from audience members prior to the program. How do you help a family member that is an overwhelmed caregiver but refuses help? Any tips on how to provide support to this person?  

Dr. Isabel Preeshagul:

I mean, I think we see caregiver burnout thousands of times a day, unfortunately, and the first thing is knowing how to recognize it. And the second most important thing is taking the time away from the visit with the patient to address the burnt-out caregiver, because there is not enough time in any visit to ever – there’s never enough time in my mind to spend with a patient.  

I’m always pulled in a thousand different directions. And I think we all feel that. But taking the appropriate time to sit down and to say, “Hey. Listen. I recognize that you’re burnt out. I can see it. Who is in your corner helping you?” And just directing focus away from the patient just for a moment and to really focus on that caregiver and to rely on the social work team and the case manager and the support groups that your institution may have and to make sure that they know about those resources. 

Katherine Banwell:

Yeah. Here’s another question we received. “Can you share more information regarding treatments available for stage IV lung cancer and their side effects?” 

Dr. Isabel Preeshagul:

It depends on if this is non-small cell or small cell. It depends on if you have a driver alteration or not. So, I think that is a little bit challenging to talk about in just one session. But basically, you’re probably looking at some kind of targeted therapy if you have a mutation versus standard of care if you don’t have a targeted mutation versus a clinical trial. And I think those are kind of like the big baskets.  

Katherine Banwell:

When is a second opinion necessary? Dr. Isabel Preeshagul: A second opinion is necessary anytime you want a second opinion.  

Dr. Isabel Preeshagul:

There is no right or wrong time, any time. You’re just not jiving with your oncologist after the first day you met them, second opinion. You’re at the end of the line and you really want toknow more, second opinion. You’ve met two other doctors. You’re not jiving, third opinion. It’s always appropriate anytime you want. 

Katherine Banwell:

So, the patient shouldn’t feel obligated to stay with that one provider? 

Dr. Isabel Preeshagul:

Never. Never, never, never, never, never. No. Please don’t feel that way. There are no hard feelings. And, if there are, that’s not the right oncologist for you. It needs to feel like a perfect friendship. And, if it’s not that, it’s not the right thing.    

Katherine Banwell:

Before we close, Dr. Preeshagul, I’d like to get your final thoughts. What would you say to the audience about the future of lung cancer care and treatment? 

Dr. Isabel Preeshagul:

I do think that the future is bright because, as I mentioned, there is now this light that is shining in the lung cancer space. And things are getting approved. and discoveries are getting made faster than we can even keep up, which is exciting and overwhelming and daunting. But I am happy that, finally, this space is taking off, so I feel optimistic.  

Katherine Banwell:

Okay. All right. Well, I wanna thank you so much for taking the time to join us today, Dr. Preeshagul.  

Dr. Isabel Preeshagul:

Thank you so much for having me. These were wonderful questions, and I look forward to many more discussions with you. Thank you.  

Katherine Banwell:

And thank you to all of our partners. To learn more about lung 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.   

Non-Small Cell Lung Cancer Treatment Options | Personalizing Therapy

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Non-Small Cell Lung Cancer Treatment Options | Personalizing Therapy from Patient Empowerment Network on Vimeo.

How does the presence of biomarkers impact lung cancer treatment options? Lung cancer specialist Dr. Isabel Preeshagul discusses how test results may influence treatment options and aid in personalizing lung cancer therapy.

Dr. Isabel Preeshagul is a thoracic medical oncologist at Memorial Sloan Kettering Cancer Center. Learn more about Dr. Preeshagul.

See More From INSIST! Lung Cancer

Related Resources:

An Expert Explains Predictive Biomarker Testing for Lung Cancer

An Expert Explains Predictive Biomarker Testing for Lung Cancer

 What Biomarkers Affect Lung Cancer Care and Treatment

What Biomarkers Affect Lung Cancer Care and Treatment?

 Lung Cancer Care Decisions | Advice for Self-Advocacy

Lung Cancer Care Decisions | Advice for Self-Advocacy

Transcript:

Katherine Banwell:

How do biomarkers in lung cancer affect treatment options for lung cancer patients? 

Dr. Isabel Preeshagul:

So, it used to only be in stage IV, but now we are learning that biomarker testing is really important from the get-go because we have induction or neoadjuvant protocols that are looking at giving targeted therapy before patients go to surgery. 

We know that there’s FDA approval for patients to get targeted therapy after surgery, and there’s a survival advantage there. So, make sure that you have next-generation sequencing testing regardless of your stage. 

Katherine Banwell:

Okay. That’s good advice. So, we’ve heard how testing and a patient’s individual disease can lead to more targeted options. And you just mentioned targeted therapies. How do they work? 

Dr. Isabel Preeshagul:

So, there are many different targeted therapies that we have. Some of given as an infusion. For HER2, for example, we have TDXD, and we have T-DM1. TDXD is the only drug that’s FDA-approved in this setting. There are clinical trials looking at T-DM1. For EGFR Exon 20, we have another infusional drug called amivantamab-vmjw (Rybrevant). For EGFR Exon 19 and Exon 21, we have a pill called osimertinib (Tagrisso). For KRAS, there’s a pill. For most of the driver alterations, it’s a pill, but some of them it does require infusional therapy. But these are therapies that are targeted at the cells that harbor that mutation.  

Katherine Banwell:

Let’s turn to immunotherapy. What is it, and how does it work? 

Dr. Isabel Preeshagul:

So, immunotherapy is basically teaching your body to recognize cancer as foreign. So, when you have – I always kind of use this hand model. So, basically, a normal cell has, let’s say, three prongs. And then sometimes what happens is cancer will grow a marker called PD-L1 that makes it hide from the immune system. So, the body thinks that this is a normal cell. So, what immunotherapy does is it comes up and it sort of puts a cap on that PD-L1 so that the cell looks foreign again and the body can attack that cell and get rid of it. So, it’s almost like ramping up your immune system to recognize that marker and get rid of that cell.  

Katherine Banwell:

What is the regimen for immunotherapy, and how often is treatment administered? 

 Dr. Isabel Preeshagul:

So, immunotherapy is approved in the neoadjuvant setting, which means before chemotherapy. It’s approved after chemotherapy, and it’s approved in the stage IV setting. There are many different regimens and many different dosings and many different drugs. But it’s typically given in your veins, either once every three weeks or once every four weeks for a certain amount of time. If it’s given in a curative setting and it’s given indefinitely or until there’s disease progression or intolerance in the stage IV setting.  

Katherine Banwell:

Okay. Let’s touch upon the side effects of these types of treatment. You’ve mentioned that there are so many, but what are some of the major side effects, and how are they managed? 

Dr. Isabel Preeshagul:

Side effects of immunotherapy can include pneumonitis, which is inflammation of the lungs, any kind of endocrinopathy like issues with your thyroid, issues with your pancreas like diabetes.  

It can cause colitis, which is diarrhea, inflammation of the colon, hepatitis, inflammation of the liver. It can cause cerebritis, inflammation of the brain. It can cause arthritis or arthralgias, inflammation of the bones. And it can also cause rash and fatigue.  

Typically, if it’s the thyroid, it’s managed with thyroid replacement hormone or a drug that would calm down the thyroid if it’s overactive. Pneumonitis is steroids. Hepatitis is sometimes treated with steroids. Colitis, steroids typically. Steroids usually come somewhere in there, usually not with the endocrinopathies, but the other itis’s, it’s typically – we start with steroids and go up from there. And the goal is to really recognize these toxicities before they become a problem and just at the glimmer of them just starting.  

Katherine Banwell:

So, would you consider these treatments to be personalized medicine then? 

Dr. Isabel Preeshagul:

So, it’s personalized in the sense that if someone has a high PD-L1 expression, there may be some data to demonstrate that they may benefit from immunotherapy or have a response. If someone can’t tolerate chemotherapy or is not interested in chemotherapy or has other reasons that may preclude them from getting it, it might be reasonable. So, in that sense, it is considered personalized.  

Katherine Banwell:

How would you define personalized medicine? 

Dr. Isabel Preeshagul:

To me, personalized medicine takes into account the biologic makeup of a patient’s disease like if they have a mutation and what their PD-L1 status is, what the histologic makeup of it. What’s their stage? And then, on the other hand, what’s important to that patient? If they’re a tailor, you want to make sure you’re not giving them a medication that’s going to cause neuropathy, so they can’t use their hands.  

If they enjoy playing the harp or the piano, same thing. If their goal is to continue to run marathons, you may want to avoid something that’s going to cause inflammation of the lungs and risk them for pneumonitis. Tailoring to make sure that the treatment is part of their life but does not become their life.  

What Essential Testing Reveals About Your Non-Small Cell Lung Cancer

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What Essential Testing Reveals About Your Non-Small Cell Lung Cancer from Patient Empowerment Network on Vimeo.

What do lung cancer test results reveal to your healthcare team about your disease? Dr. Isabel Preeshagul provides an overview of essential testing for lung cancer and explains the difference between germline and somatic mutations.

Dr. Isabel Preeshagul is a thoracic medical oncologist at Memorial Sloan Kettering Cancer Center. Learn more about Dr. Preeshagul.

See More From INSIST! Lung Cancer

Related Resources:

Insist on Better Lung Cancer Care | Tips for Essential Communication

 Non-Small Cell Lung Cancer Treatment Options | Personalizing Therapy

Non-Small Cell Lung Cancer Treatment Options | Personalizing Therapy

 Non-Small Cell Lung Cancer Treatment | Clinical Trials and Research Updates

Non-Small Cell Lung Cancer Treatment | Clinical Trials and Research Updates

Transcript:

Katherine Banwell:

I’d like to turn to the clinical side of non-small cell lung cancer. What tests help you identify the type and stage of lung cancer? 

Dr. Isabel Preeshagul:

Obviously, you need a CAT scan. You need a CAT scan of the chest, abdomen, pelvis, and you need an MRI brain and a PET scan.  

Those are really the gold standards for determining clinical staging. In regards to pathologic staging, it’s really important to have tissue samplings. So, you biopsy a site of disease that’s concerning to you. If it looks like there’s only disease in the chest, you want to biopsy the site where there’s the tumor, and then you talk with your thoracic surgery or pulmonary team to determine the best way to sample the mediastinum for full staging.  

Katherine Banwell:

Why is an accurate diagnosis so important? 

Dr. Isabel Preeshagul:

So, an accurate diagnosis is so important, because lung cancer is by no means black and white anymore. There are so many histologic subtypes that we are learning about. There are so many different molecular drivers that we are learning about. So, making sure you have the right diagnosis, full and next-generation sequencing testing, all of the imaging that you need could really make or break your treatment plan.  

Katherine Banwell:

Dr. Preeshagul, let’s talk about biomarker testing. How is biomarker testing for lung cancer different from hereditary genetic testing? 

Dr. Isabel Preeshagul:

So, we do do hereditary genetic testing for lung cancer patients as well. So, I think let’s backtrack a little bit. When you’re doing on a patient, there are germline mutations and there are somatic mutations. And germline mutations are mutations that you might get from Mom and Dad that they got from their parents and so on and so forth that you could give to your children or your brother and sister or whatever. So, that’s germline testing that could be passed along.  

That would be like BRCA or any other APC gene, but we are learning more and more that there are mutations in lung cancer that do have a hereditary aspect to them. So, we are learning now that while we do somatic testing, which is to find a mutation that just spontaneously happened in your tumor all on its own, it’s really important to pair that with germline testing to make sure that there isn’t some kind of heritable mutation that’s also driving this lung cancer.  

Katherine Banwell:

You mentioned hereditary genetic testing. Should family members of people with lung cancer undergo genetic testing then just to be reassured? 

Dr. Isabel Preeshagul:

So, if there is a germline mutation, then they should – the family members should be referred to a geneticist to have that discussion.  

Katherine Banwell:

What are common lung cancer biomarkers? 

Dr. Isabel Preeshagul:

So, we have nine biomarkers within approval right now, but there are so many. There’s more than I could even talk about today. But some of the more common ones are EGFR, ALK, ROS1, MET exon 14. You have KRAS, KRAS-G12C, which is a newer one. We have NTRK. We have RET. The list goes on, HER2. I could talk for – there’s not enough time on this Zoom video to talk about all of the mutations. But there are nine mutations with approvals as of now to date, this very moment. That could change tomorrow.   

What Non-Small Cell Lung Cancer Treatment is Right for You?

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What Non-Small Cell Lung Cancer Treatment is Right for You? from Patient Empowerment Network on Vimeo.

What’s the best approach for YOUR lung cancer? Dr. Isabel Preeshagul discusses the importance of engaging in your lung cancer care decisions, shares advice for working with your team to determine a treatment approach, and reviews factors that affect therapy options. Dr. Preeshagul also provides an update on the latest research and clinical trials.

Dr. Isabel Preeshagul is a thoracic medical oncologist at Memorial Sloan Kettering Cancer Center. Learn more about Dr. Preeshagul.

Download Program Resource Guide

See More From INSIST! Lung Cancer

Related Resources:

An Expert Explains Predictive Biomarker Testing for Lung Cancer

An Expert Explains Predictive Biomarker Testing for Lung Cancer

 Personalized Lung Cancer Treatment | Key Factors to Consider

Personalized Lung Cancer Treatment | Key Factors to Consider 

 Understanding Currently Available Non-Small Cell Lung Cancer Treatments

Understanding Currently Available Non-Small Cell Lung Cancer Treatments 

Transcript:

Katherine Banwell:

Hello and welcome. I’m Katherine Banwell, your host for today’s program. Today, we’ll discuss the latest advances in non-small cell lung cancer care as part of our Insist series, which encourages patients to play an active role and insist on better care. Before we get into the discussion, please remember that this program is not a substitute for seeking medical advice. Please refer to your healthcare team about what might be best for you. Well, let’s meet our guest today. Joining me is Dr. Isabel Preeshagul. Dr. Preeshagul, it’s so good to have you with us. Thank you. Would you introduce yourself? 

Dr. Isabel Preeshagul:

Yes. Thank you so much for having me and for the very kind introduction. My name’s Isabel Preeshagul. I am a Thoracic Medical Oncologist at Memorial Sloan Kettering Cancer Center, and it is a huge honor to be here with you today. 

Katherine Banwell:

Well, we’re so glad to have you with us. I’d like to start with a question pertaining to our series title, Insist. Why is it essential for patients to collaborate with their providers on care treatment decisions? 

Dr. Isabel Preeshagul:

So, collaborating is so important, right? I always tell my patients this is not a dictatorship, right? This is a collaborative effort where I’m here to guide you, but you are the captain of the ship. 

You are the one that needs to make all of the decisions, and I’m here to make sure that the ship goes in a smooth direction, so making sure we have open lines of communication that the patients and their caregivers feel comfortable talking to me and my team and also vice versa and that we trust each other. It’s so important because we are going for a marathon, right? We’re not going for a sprint. This is a long-term relationship, whether we’re treating for cure or we’re treating you with palliative intent and it’s treatable but not curable. We’re going to be following with each other for a long time.  

Katherine Banwell:

A lung cancer healthcare team, of course, consists of a number of different providers. Would you tell us about the various members on a team? 

Dr. Isabel Preeshagul:

Sure. So, there is – there are the people that do the scheduling, that make sure that the CAT scan is scheduled, that the MRI is done, your chemo gets scheduled, all of that. The schedulers are super important and an integral part of our team.  

And then we also have our office coordinators  that answers the phone calls and passes along the messages and assists with scheduling and sort of sets expectations and is the face of the practice. Then you have an office practice nurse or an oncology practice nurse who is the doctor’s right hand, making sure that the patients get proper chemotherapy teaches, making sure that they understand about possible side effects, risks versus benefits, making sure medications are up to date, assessing symptoms.  

They are sort of the front line when it comes to any patient call they’re triaging, and they’re escalating or deescalating. That would be the office practice nurse. And then you have an advanced care practitioner, an APP. You either have a nurse practitioner or a PA that’s working with you that’s sometimes seeing patients independently, sometimes putting chemotherapy orders, you know, really serving as almost as another doctor. 

If for some reason there is something that the doctor’s not available to do, the doctor needs in a pinch, or my patients that are almost at long-term follow-up that are doing great that are just kind of coasting, I will share with my NP and make sure that they know her just as well as they know me. And sometimes there’s a fellow or there’s a resident or there’s a med student that’s part of the team as well because see one, do one, teach one. It’s really important to teach those that are coming after you and serve as mentors and really include them in part of the team and part of the decision-making. And then you have the doctor that just kind of oversees everything.  

Katherine Banwell:

Of course. How would you define treatment goals for people with lung cancer? 

Dr. Isabel Preeshagul:

So, the goal of treatment, I think, is really contingent upon someone’s stage, but it’s also contingent upon what’s important to the patient, right? So, we have patients that are stage I all the way to stage IIIC that we treat with intention to cure.

And patients that have stage IV disease, it’s treatable but not curable. So, I am very transparent with that as long as I have the information to have that discussion. With that being said, there are some patients with stage IIIdisease or stage I disease that don’t really want treatment and want to focus on quality of life. And that’s okay too. And in which case, you know, at some point, their cancer will likely progress. How quickly or when that will happen, we don’t know. Could they pass from something else? It’s possible. But you really need to talk about what’s important to the patient, because it’s not always cut and dry.  

Katherine Banwell:

As you mentioned, Dr. Preeshagul, there are several different support members on a team. What would you say to patients or even care partners who can sometimes feel like they’re bothering their healthcare team with their questions and comments? 

Dr. Isabel Preeshagul:

So, we do get that concern a lot. And I always say, “I’m here for you 24/7. And, if it’s not me, it’s someone that’s just as qualified to answer your questions no matter what.” 

“And I would rather get a phone call at 3:00 a.m. than get a phone call at 9:00 a.m., and you need to go to the hospital right now or God forbid something happened. I get a phone call from someone in the ICU that you went overnight and terrible things happened. So, I want the phone calls to come through to keep you out of the hospital and keep you from going south. So, call me.” And I never try to – I don’t try to outline contingency plans or criteria of what would warrant a call, because then you end up getting in trouble.  

I always just tell my patient, “Think about how you’re feeling now in front of me. If you’re feeling any different than how you feel at this very moment, call me.”  

Katherine Banwell:

Good advice. I’d like to turn to the clinical side of non-small cell lung cancer. What tests help you identify the type and stage of lung cancer?  

Dr. Isabel Preeshagul:

Obviously, you need a CAT scan. You need a CAT scan of the chest, abdomen, pelvis, and you need an MRI brain and a PET scan.  

Those are really the gold standards for determining clinical staging. In regards to pathologic staging, it’s really important to have tissue samplings. So, you biopsy a site of disease that’s concerning to you. If it looks like there’s only disease in the chest, you want to biopsy the site where there’s the tumor, and then you talk with your thoracic surgery or pulmonary team to determine the best way to sample the mediastinum for full staging.  

Katherine Banwell:

Why is an accurate diagnosis so important?  

Dr. Isabel Preeshagul:

So, an accurate diagnosis is so important because lung cancer is by no means black and white anymore. There are so many histologic subtypes that we are learning about. There are so many different molecular drivers that we are learning about. So, making sure you have the right diagnosis, full and next-generation sequencing testing, all of the imaging that you need could really make or break your treatment plan.  

Katherine Banwell:

Dr. Preeshagul, let’s talk about biomarker testing. How is biomarker testing for lung cancer different from hereditary genetic testing?

Dr. Isabel Preeshagul:

So, we do do hereditary genetic testing for lung cancer patients as well. So, I think let’s backtrack a little bit. When you’re doing on a patient, there’s germline mutations and there’s somatic mutations. And germline mutations are mutations that you might get from Mom and Dad that they got from their parents and so on and so forth that you could give to your children or your brother and sister or whatever. So, that’s germline testing that could be passed along.  

That would be like BRCA or any other APC gene, but we are learning more and more that there are mutations in lung cancer that do have a hereditary aspect to them. So, we are learning now that while we do somatic testing, which is to find a mutation that just spontaneously happened in your tumor all on its own, it’s really important to pair that with germline testing to make sure that there isn’t some kind of heritable mutation that’s also driving this lung cancer.  

Katherine Banwell:

You mentioned hereditary genetic testing. Should family members of people with lung cancer undergo genetic testing then just to be reassured? 

Dr. Isabel Preeshagul:

So, if there is a germline mutation, then they should – the family members should be referred to a geneticist to have that discussion.   

Katherine Banwell:

What are common lung cancer biomarkers? 

Dr. Isabel Preeshagul:

So, we have nine biomarkers within approval right now, but there are so many. There’s more than I could even talk about today. But some of the more common ones are EGFR, ALK, ROS1, MET exon 14. You have KRAS, KRAS-G12C, which is a newer one. We have NTRK. We have RET. The list goes on, HER2. I could talk for – there’s not enough time on this Zoom video to talk about all of the mutations. But there are nine mutations with approvals as of now to date, this very moment. That could change tomorrow.  

Katherine Banwell:

Of course, it could. How do biomarkers in lung cancer affect treatment options for lung cancer patients? 

Dr. Isabel Preeshagul:

So, it used to only be in stage IV, but now we are learning that biomarker testing is really important from the get-go because we have induction or neoadjuvant protocols that are looking at giving targeted therapy before patients go to surgery. 

We know that there’s FDA approval for patients to get targeted therapy after surgery, and there’s a survival advantage there. So, make sure that you have next-generation sequencing testing regardless of your stage.  

Katherine Banwell:

Okay. That’s good advice. So, we’ve heard how testing and a patient’s individual disease can lead to more targeted options. And you just mentioned targeted therapies. How do they work? 

Dr. Isabel Preeshagul:

So, there’s many different targeted therapies that we have. Some of given as an infusion. For HER2, for example, we have TDXD, and we have T-DM1. TDXD is the only drug that’s FDA-approved in this setting. There are clinical trials looking at T-DM1. For EGFR Exon 20, we have another infusional drug called amivantamab (Rybrevant). For EGFR Exon 19 and Exon 21, we have a pill called osimertinib (Tagrisso). For KRAS, there’s a pill. For most of the driver alterations, it’s a pill, but some of them it does require infusional therapy. 

But these are therapies that are targeted at the cells that harbor that mutation.  

Katherine Banwell:

Let’s turn to immunotherapy. What is it, and how does it work? 

Dr. Isabel Preeshagul:

So, immunotherapy is basically teaching your body to recognize cancer as foreign. So, when you have – I always kind of use this hand model. So, basically, a normal cell has, let’s say, three prongs. And then sometimes what happens is cancer will grow a marker called PD-L1 that makes it hide from the immune system. So, the body thinks that this is a normal cell. So, what immunotherapy does is it comes up and it sort of puts a cap on that PD-L1 so that the cell looks foreign again and the body can attack that cell and get rid of it. So, it’s almost like ramping up your immune system to recognize that marker and get rid of that cell. 

Katherine Banwell:

What is the regimen for immunotherapy, and how often is treatment administered? 

Dr. Isabel Preeshagul:

So, immunotherapy is approved in the neoadjuvant setting, which means before chemotherapy. It’s approved after chemotherapy, and it’s approved in the stage IV setting. There are many different regimens and many different dosings and many different drugs. But it’s typically given in your veins, either once every three weeks or once every four weeks for a certain amount of time. If it’s given in a curative setting and it’s given indefinitely or until there’s disease progression or intolerance in the stage IV setting.  

Katherine Banwell:

Okay. Let’s touch upon the side effects of these types of treatment. You’ve mentioned that there are so many, but what are some of the major side effects, and how are they managed? 

Dr. Isabel Preeshagul:

Side effects of immunotherapy can include pneumonitis, which is inflammation of the lungs, any kind of endocrinopathy like issues with your thyroid, issues with your pancreas like diabetes.  

It can cause colitis, which is diarrhea, inflammation of the colon, hepatitis, inflammation of the liver. It can cause cerebritis, inflammation of the brain. It can cause arthritis or arthralgias, inflammation of the bones. And it can also cause rash and fatigue. 

Typically, if it’s the thyroid, it’s managed with thyroid replacement hormone or a drug that would calm down the thyroid if it’s overactive. Pneumonitis is steroids. Hepatitis is sometimes treated with steroids. Colitis, steroids typically. Steroids usually come somewhere in there, usually not with the endocrinopathies, but the other itis’s, it’s typically – we start with steroids and go up from there. And the goal is to really recognize these toxicities before they become a problem and just at the glimmer of them just starting.  

Katherine Banwell:

So, would you consider these treatments to be personalized medicine then? 

Dr. Isabel Preeshagul:

So, it’s personalized in the sense that if someone has a high PD-L1 expression, there may be some data to demonstrate that they may benefit from immunotherapy or have a response. If someone can’t tolerate chemotherapy or is not interested in chemotherapy or has other reasons that may preclude them from getting it, it might be reasonable. So, in that sense, it is considered personalized.  

Katherine Banwell:

How would you define personalized medicine? 

Dr. Isabel Preeshagul:

To me, personalized medicine takes into account the biologic makeup of a patient’s disease like if they have a mutation and what their PD-L1 status is, what the histologic makeup of it. What’s their stage? And then, on the other hand, what’s important to that patient? If they’re a tailor, you want to make sure you’re not giving them a medication that’s going to cause neuropathy, so they can’t use their hands.  

If they enjoy playing the harp or the piano, same thing. If their goal is to continue to run marathons, you may want to avoid something that’s going to cause inflammation of the lungs and risk them for pneumonitis. Tailoring to make sure that the treatment is part of their life but does not become their life. 

Katherine Banwell:

If the test results don’t reveal one of the biomarkers you’ve been talking about, what other treatments are available?  

Dr. Isabel Preeshagul:

So, if I don’t have an FDA approval, then sometimes we look to see if there is a clinical trial in our early phase drug development program, and we talk about a clinical trial. If there’s no clinical trial and I don’t have an FDA approval, then we have to talk about what options are considered standard of care and how to make that work into the patient’s lifestyle.  

Katherine Banwell:

What about surgery? When is it used?  

Dr. Isabel Preeshagul:

Surgery is typically used in the curative setting with early-stage disease. We’re really trying to give patients some kind of chemotherapy or some kind of treatment before they go to surgery. It’s shown to improve outcomes. It just gives us a en vivo view of how the tumor will respond to the treatment. So, we typically use surgery in the curative setting. And, at times, it’s appropriate to use surgery for a metastasectomy when you have one little site that’s growing. Sometimes after a tumor board discussion, it might be reasonable to resect that area.  

Katherine Banwell:

Is radiation still used? 

Dr. Isabel Preeshagul:

Same thing. It can be used in the curative setting, typically for patients with stage IIIB or stage IIIC disease and combined with chemotherapy patients that are not considered surgical candidates, or it’s used in the palliative setting when patients have painful metastases. 

Katherine Banwell:

Would you define the B and C? You’ve mentioned that a couple of times.  

Dr. Isabel Preeshagul:

Yeah. 

Katherine Banwell:

We’re used to hearing Stage 1, 2, 3, 4. But what’s a stage IIIB and a stage IIIC? 

Dr. Isabel Preeshagul:

Yeah. Sure. Sure. So, it does get a little bit into the weeds here about the size of the tumor and the amount of lymph nodes and location of the lymph nodes. But basically, stage IIIA is considered resectable. That means – that could be the size of the tumor with no lymph nodes, or it could be a smaller tumor with a lymph node on the same side as the disease. Stage IIIB would be a lymph node right underneath the windpipe at the station 7. And stage IIIB also includes lymph nodes that have crossed over to the contralateral side. And stage IIIC would be lymph nodes that are maybe up at the contralateral supraclavicular space. 

Katherine Banwell:

Okay. Do treatment options change if the lung cancer returns? 

Dr. Isabel Preeshagul:

Yes, they do change depending on if this is the same tumor type that’s come back. It’s typically a different treatment algorithm, yeah.   

Katherine Banwell:

Okay. And should biomarker testing be done again if a relapse occurs? 

Dr. Isabel Preeshagul:

100 percent. Because it guides everything about a patient’s treatment. It’s super important.  

Katherine Banwell:

Okay. What are you excited about right now in lung cancer research? 

Dr. Isabel Preeshagul:

I am excited and overwhelmed by the fact that we have so many approvals and so much exciting data that was just presented at ASCO and World Lung and ESMO that it’s next to impossible to keep up. And I’m happy that we have that problem, and I’m happy that the patients have – there’s a spotlight on lung cancer when we were in the shadows. And now, I think we have the spotlight. 

And all of these approvals, you know, with it being Lung Cancer Awareness Month as well, I think is just so important. Just to make sure that we get the knowledge of these new approvals out there though, that is another struggle. 

Katherine Banwell:

Well, are there any current clinical trials that look promising to you? 

Dr. Isabel Preeshagul:

Yeah, I think there are many clinical trials. In the induction setting, there was some data that was just presented on ALINA looking at adjuvant alectinib (Alecensa). We just had a – we have approval for adjuvant osimertinib (Tagrisso) and the ADAURA trial.  

But we are learning more and more that as these targeted therapies have approval in stage IV, we’re trialing them in stage III, and then we’re going to trial them in earlier stages and earlier settings. So, this has been the pattern of how drugs get approved. So, yes, there’s lots of exciting data coming through. 

Katherine Banwell:

That’s excellent. Can you talk about antibody drug conjugates and where they fit into lung cancer care? 

Dr. Isabel Preeshagul:

Yeah. That’s a great question. I don’t think anyone knows the answer as to where they fit in just yet. 

We have probably over 300 antibody drug conjugates that are in development right now. And one of the more common ones that we use is trastuzumab deruxtecan (Enhertu), or TDXD, which is used in patients that harbor HER2 alterations in the stage IV lung cancer setting. It is basically almost like a Trojan horse. So, you have this antibody.  

It’s typically IgG1, immunoglobulin. And then you have a linker, and then at the end of that linker is the warhead or the chemotherapy agent. So, the antibody comes in towards the cancer cell looking very innocent. It binds to the cancer cell. And, once it binds, then everyone inside the Trojan horse or this warhead rush into the cell and get to do its damage. So, it’s a totally different mechanism. We’re trying to outsmart some of the bypass mechanisms that cancer cells develop. And this may be the new wave, but stay tuned, more to come.  

Katherine Banwell:

Right. So, it’s promising.  How can patients find out more about current clinical trials? 

Dr. Isabel Preeshagul:

So, you can always ask your healthcare practitioner if there are any clinical trials at the institution that you’re at, but clinicaltrials.gov has all the clinical trials that are available nationally and internationally.  

You just type in your disease type. You can type in a couple keywords, EGFR maybe or ROS1 or stage IV, something along those lines, and then it should populate a list of clinical trials and what institutions have them open, if they’re still accruing or if they’re not, and a contact on that trial.  

Katherine Banwell:

If a patient is interested in a clinical trial, what kinds of questions should they be asking their healthcare about the trial? 

Dr. Isabel Preeshagul:

So, the first question to ask is, “Do we have any clinical trials that are appropriate for me?” If the answer is yes, “Are they appropriate for me now, or are they appropriate for me if what I’m on right now is not working?” 

So, trying to figure out where that will be, and if they are appropriate for you now, how can I get evaluated, and how can we get things underway? 

Katherine Banwell:

Yeah. What would you say to patients who are interested in participating in a clinical trial, but they’re nervous about it?

Dr. Isabel Preeshagul:

I think one thing that I love about being on a clinical trial is that there are more eyes are on you, because we are looking to get something approved, and we are just watching every single little granular detail. In a way, it’s almost like you’re being more micromanaged than if you were on standard of care because of just how many stops and checks there are, how many eyes are looking at your labs after the doctor and the nurse and the nurse practitioner, and the fellow take a look at everything. It’s 10 other people. So, it’s almost like it’s extra safe because of all of that. It’s exciting because you are hopefully getting tomorrow’s treatment today, right? 

You’re trailblazing the way for other people after you. So, I think it’s exciting, but, of course, it’s nerve-wracking. It’s something new. You don’t know if it’s going to work. But I have to believe that the way that clinical trials are designed now and the clinical trials that we choose to open here, we really hope are going to be pushing the space forward. 

Katherine Banwell:

Yeah. I’d like to get to a few questions that we received from audience members prior to the program. How do you help a family member that is an overwhelmed caregiver but refuses help? Any tips on how to provide support to this person?  

Dr. Isabel Preeshagul:

I mean, I think we see caregiver burnout thousands of times a day, unfortunately, and the first thing is knowing how to recognize it. And the second most important thing is taking the time away from the visit with the patient to address the burnt-out caregiver, because there is not enough time in any visit to ever – there’s never enough time in my mind to spend with a patient.  

I’m always pulled in a thousand different directions. And I think we all feel that. But taking the appropriate time to sit down and to say, “Hey. Listen. I recognize that you’re burnt out. I can see it. Who is in your corner helping you?” And just directing focus away from the patient just for a moment and to really focus on that caregiver and to rely on the social work team and the case manager and the support groups that your institution may have and to make sure that they know about those resources. 

Katherine Banwell:

Yeah. Here’s another question we received. “Can you share more information regarding treatments available for stage IV lung cancer and their side effects?” 

Dr. Isabel Preeshagul:

It depends on if this is non-small cell or small cell. It depends on if you have a driver alteration or not. So, I think that is a little bit challenging to talk about in just one session. But basically, you’re probably looking at some kind of targeted therapy if you have a mutation versus standard of care if you don’t have a targeted mutation versus a clinical trial. And I think those are kind of like the big baskets.  

Katherine Banwell:

When is a second opinion necessary? Dr. Isabel Preeshagul: A second opinion is necessary anytime you want a second opinion.  

Dr. Isabel Preeshagul:

There is no right or wrong time, any time. You’re just not jiving with your oncologist after the first day you met them, second opinion. You’re at the end of the line and you really want toknow more, second opinion. You’ve met two other doctors. You’re not jiving, third opinion. It’s always appropriate anytime you want. 

Katherine Banwell:

So, the patient shouldn’t feel obligated to stay with that one provider? 

Dr. Isabel Preeshagul:

Never. Never, never, never, never, never. No. Please don’t feel that way. There are no hard feelings. And, if there are, that’s not the right oncologist for you. It needs to feel like a perfect friendship. And, if it’s not that, it’s not the right thing.    

Katherine Banwell:

Before we close, Dr. Preeshagul, I’d like to get your final thoughts. What would you say to the audience about the future of lung cancer care and treatment? 

Dr. Isabel Preeshagul:

I do think that the future is bright because, as I mentioned, there is now this light that is shining in the lung cancer space. And things are getting approved. and discoveries are getting made faster than we can even keep up, which is exciting and overwhelming and daunting. But I am happy that, finally, this space is taking off, so I feel optimistic.  

Katherine Banwell:

Okay. All right. Well, I wanna thank you so much for taking the time to join us today, Dr. Preeshagul.  

Dr. Isabel Preeshagul:

Thank you so much for having me. These were wonderful questions, and I look forward to many more discussions with you. Thank you.  

Katherine Banwell:

And thank you to all of our partners. To learn more about lung 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.   

Non-Small Cell Lung Cancer Essential Testing | What You Should Know

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Non-Small Cell Lung Cancer Essential Testing | What You Should Know from Patient Empowerment Network on Vimeo.

What tests are needed for a lung cancer diagnosis, and how might the results affect treatment options? Dr. Erin Schenk reviews the most common tests for lung cancer, including biomarker testing, and how the results may be used to determine the most appropriate therapy for your particular disease.

Dr. Erin Schenk is a medical oncologist, lung cancer researcher, and assistant professor in the division of medical oncology at the University of Colorado Anschutz Medical Center.

See More From INSIST! Lung Cancer

Related Resources:

Understanding Currently Available Non-Small Cell Lung Cancer Treatments

 Advances in Non-Small Cell Lung Cancer Testing

Advances in Non-Small Cell Lung Cancer Testing

 Personalized Lung Cancer Treatment | Key Factors to Consider

Personalized Lung Cancer Treatment | Key Factors to Consider

Transcript:

Katherine Banwell:

What are the various subtypes of lung cancer, and how are they identified?  

Dr. Erin Schenk:

Absolutely. So, there are a number of different subtypes of lung cancer that are important for us to identify, because it helps to stratify or helps to select the right treatment approaches for a patient. So, usually when someone is diagnosed with lung cancer there was a scan done at some point that noticed a mass or masses in the body. 

What happens next is a biopsy happens where a needle is used to sample the tissue, and that could be in the lung, that could be in lymph nodes or other parts of the body and that tissue that’s sampled is first sent to my colleagues in pathology.  

And they’re a group of doctors who look at tissues underneath the microscope and try to identify what those are. And based on that initial pathology analysis, we can identify usually pretty straightforward, what is the type of cancer that they see under the microscope.  

And so, in very general terms there are non-small cell lung cancers, there is a group called small cell lung cancers, and there’s also a group called neuroendocrine cancers as well. Oftentimes, times we’re able to differentiate these types of tumors, these types of lung cancers based on how different markers show up, and these are called stains. 

And these stains can differentiate non-small cell between adenocarcinoma versus squamous cell carcinoma. And then they can also help differentiate small cell lung cancer. And then, of course, they can also help to identify if this is a neuroendocrine tumor. 

Katherine Banwell:

Today we’re going to focus on non-small cell lung cancer. Are there specific tests that patients should ask their doctor for following a diagnosis? 

Dr. Erin Schenk:

Absolutely, and I think it’s sometimes helpful to understand what are all the pieces of information I need when I first meet a patient to make decisions about treatments? So, we just went over the histology or another word, the pathology, what does the cancer look like underneath – under the microscope? That can help and that’s one of the pieces, understanding what type of non-small cell lung cancer is present. 

Additional information that’s needed includes certain tests, and you might hear say like, molecular testing or sequencing.  

Those pieces of information can be really important for treatment selection. So, whether there’s a diagnosis of adenocarcinoma or squamous cell lung cancer, we always try to know the PD-L1 status. And that’s actually a surface marker that’s present on the outside of the cancer cells and is able to help us select immunotherapy treatments as appropriate.  

Oftentimes, patients with lung adenocarcinoma will get further sequencing of the tumor itself. And again, you might hear of this called molecular testing or next-generation sequencing, NGS. There are a lot of terms we use for it, but fundamentally, what we’re trying to do is understand the vulnerabilities of the cancer cells. 

And these vulnerabilities can be identified by these molecular tests. They often are able to recognize mutations or fusions or genetic changes within the cancer cells that are present. This is critically important, because we have a whole number of oral targeted therapies that can go after these mutations or alterations, and in other words, they go after the vulnerability in the cancer cells. That’s the adenocarcinoma histology.  

That’s the majority of non-small cell lung cancer diagnoses but I think also if you have been told your diagnosis is of squamous lung cancer, classically we don’t often think of those driver alterations or those fusions or mutations that I just spoke about. But I think it’s also quite important for patients in that situation to also undergo molecular testing.  

As we learn more and more, sometimes those squamous lung cancers can also bear those same alterations. Not to the same frequency, but they can be present, and I think it’s important as you’re thinking about a patient to try to understand what are all the tools I have for them to do that sequencing just to make sure you’re not missing something. So, that’s a really in-depth look to molecular testing.  

I’d like to transition to some of the other tests that would be necessary to help put that molecular testing in context. Another important piece is something called staging.  And staging is a way to determine if the lung cancer has traveled elsewhere in the body. 

Sometimes it can be involved in the lymph nodes of the middle of the chest. Sometimes it can go outside the chest. For example, to the bones or the liver or the brain, and understanding that information, understanding that lay of the land before we start treatment, is really important, not only for treatment selection, like the treatments, the medicines I would give as a medical oncologist.  

But also, in thinking about which other colleagues of mine who help take care of patients with lung cancer should I also involve in some of these treatment decisions. So, staging can often involve CT scans of the chest, abdomen, pelvis. A PET scan can be done. As well as an MRI of the brain. 

Katherine Banwell:

Dr. Schenk, I just want to confirm that you’ve been speaking about molecular testing, that’s the same as biomarker testing, right? 

Dr. Erin Schenk:

Exactly. Exactly. 

Katherine Banwell:

And how is it performed? 

Dr. Erin Schenk:

So, biomarker testing, molecular testing, NGS, there’s a whole range of synonyms we use, that is done primarily on the tumor tissue.  

So, the first test that usually comes back is a marker on the cancer cell. 

That’s PD-L1. That is an IHC test that is able to be done pretty quickly and we’re able to have a turnaround time of just a few days to understand that first biomarker. But the PD-L1 status does not make sense unless we have all of the other information to get the best context, the best understanding of the tumor and what drives the tumor. That additional testing is actually the next-generation sequencing where the genetic material of cancer cells, the DNA and RNA is sequenced in a laboratory to look for those mutations or fusions or other alterations that can drive the cancer cells. And again, it helps me identify additional vulnerabilities in the cancer cells to allow me to pick the optimal therapy for the patient in front of me.  

The tissue testing is the gold standard and we try to get all of our answers from the tissue. Sometimes we’re also able to get additional information from the blood, and that’s what’s called a liquid biopsy. Cancer cells – in some patients, cancer cells shed their genetic material into the bloodstream.  

And these specialized tests are able to pick up that genetic material, have the sequencing done on that, and then report back to me about what may or may not be found.  

Now, as I mentioned, not all of lung cancers shed this information into the blood, so it’s not – if the blood does not reveal an answer or information, that’s – we still need to look closer at the tissue, but occasionally if the blood reveals certain alterations, that can be acted upon, and we don’t have to wait for the tissue testing. 

I think one of the challenges that I absolutely sympathize with their biomarker or molecular testing is that it can take a series of weeks to really get all of the information necessary to make the best choice for the patient in front of us.  

And I have a – I have a saying I like to share with patients that is really important and I think really fundamental to the treatment choices for patients with lung cancer and that is, it’s better to get started on the right treatment rather than the fast one, and that’s true. We know through a series of clinical trials that if I were to start a patient on a treatment that wasn’t appropriate to their biomarkers I actually hurt them. So, I actually reduce how well their later therapies will work. 

And so, it’s a tough wait and I anxiously wait with all of my patients but it’s a really important – it’s really important to get all of that information together. 

Katherine Banwell:

Well, would the cancer change dramatically over a period of three or four weeks?  

Dr. Erin Schenk:

That’s it, you know, that’s a question I hear a lot from patients, and, again, to empathize with the agony of waiting, it’s hard to wait but I can tell you as a doctor who’s taken care of many, many patients with lung cancer the weeks do not make a difference in terms of will have – will it hurt me? So, it will not in general it does not hurt to wait. It’s better to get started on the right treatment because the right treatment has the highest chance of being effective. 

So, the two to three weeks very rarely in my experience has that changed a situation for a patient, but that’s also why we frequently do the liquid biopsy testing at the same time as the tissue testing, because we too want to try to get the answer as quick as possible. So, we try to exhaust all of the routes that we have to get the answer that we need for our patients. 

Katherine Banwell:

What about the latest advances, is there anything in lung cancer testing that patients should know about?  

Dr. Erin Schenk:

Yes, absolutely. I think more and more we’re using these liquid biopsies in different situations for patients with lung cancer. So, Katherine, you and I have mostly been talking about patients who’ve been diagnosed with metastatic disease or a disease that’s been spread outside of the lungs. The liquid biopsy testing, though we’re starting to use in patients who have tumors we can remove with surgery or tumors we can try to cure with a combination of chemotherapy and radiation therapy. 

And we’re using more as a marker of response, and what I mean by that is let’s say someone with a cancer that can be surgically resected or removed by surgery, we can check their liquid biopsy. And if we see a marker in their liquid biopsy, we can then follow that over time in conjunction with scans to try to understand is the cancer – you know, with all the information we can, is the cancer completely gone or are we starting to see that marker again? Do we need to think about doing different scans or different tests to look for a potential area of recurrence of the cancer? 

Katherine Banwell:

What sort of questions should patients be asking about their test results? 

Dr. Erin Schenk:

Uh-huh. I think there are – I think the primary question is “Have you sent my tissue for biomarker testing?” 

And this is true – in my opinion, this is true regardless of the stage of diagnosis, again in the non-small cell lung cancer space, and that’s because we are starting to use some of our targeted therapies as well as our immunotherapies in patients with cancer that can be resected by surgery or maybe would get chemotherapy and radiation therapy. So, these biomarkers are also important in that decision-making for patients that have an earlier stage of disease. And so, I think the first question is, “Has my tissue been sent for biomarker testing?” because I think that’s a part as a necessary part of care given the advances that we’ve made.  

That’s the first question, two, “When do you expect the results? When did it get sent off?” and then three, you know once that has been sent off and whether that’s tissue testing, liquid biopsy, or both, talking with your doctor and your team about what it means.  

How they incorporate this data into your treatment decisions, and then occasionally, asking about did they get all the information they need? Because while we’ve been able to do this biomarker testing for lung cancer for years now, you know, no test is perfect and sometimes cancer cells aren’t the best material to start with when you’re trying to get a really definitive answer.  

So, occasionally patients might need to be biopsied again to really and truly get the full spectrum of information necessary prior to making treatment decisions.  

Thriving With AML | Advice for Setting Goals and Making Treatment Decisions

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Thriving With AML | Advice for Setting Goals and Making Treatment Decisions from Patient Empowerment Network on Vimeo.

When facing an acute myeloid leukemia (AML) diagnosis, treatment decisions may feel overwhelming. AML specialist Dr. Alice Mims shares expert guidance for setting treatment goals with your team, advice for making care decisions, and explains how tests results may impact choices.

Dr. Alice Mims is a hematologist specializing in acute and chronic myeloid conditions. Dr. Mims serves as the Acute Leukemia Clinical Research Director at The Ohio State University Comprehensive Cancer Center – James. Learn more about Dr. Mims.

See More from Thrive AML

Related Resources:

Phases of AML Therapy | Understanding Treatment Options

 Expert Advice | Managing AML Symptoms and Treatment Side Effects

 Stem Cell Transplant for AML | What Patients Should Know

Transcript:

Katherine Banwell:

One part of thriving with AML is finding a treatment approach that manages your disease and fits with your lifestyle. Before we talk about therapy, can you tell us how treatment goals are established for an individual patient? 

Dr. Alice Mims:

Sure. So, for individual patients, I think it’s very important that there is an initial discussion that doesn’t feel too shortened that you can have time with your care team to really go into depth about the diagnosis, about the specifics of your particular subtype of acute myeloid leukemia, understanding the treatment options, and then being given time allowed to reflect on all of that information. So, then you can come back and have your questions better answered that may come from that initial discussion. 

And then help you with your team make a decision based on that information that works best for you.  

Katherine Banwell:

Outside of patient preference, what other factors do you take into account when working with a patient to decide on a treatment plan? 

Dr. Alice Mims:

Sure. So, there are multiple different factors that we try to take into account. Again, yeah, most importantly what patients’ goals are like you mentioned, but those include overall health, including different comorbidities, so what other healthcare diagnoses, medications are you taking, what are the patients’ age, thinking about that for long-term goals, overall support from loved ones, family to — just because care can be really involved. And then in particular, thinking about specific features of that individual patient’s AML, including molecular, genetic features of the leukemia. 

Katherine Banwell:

Well, let’s talk more in depth about the test results you just mentioned. 

What is the test for genetic markers? And how is it conducted? 

Dr. Alice Mims:

So, there are a few different tests that we use under that scope of genetic markers. So, those include looking at chromosomal abnormalities of the DNA. So, with cytogenetics, and then also more specific prose where we call FISH testing. And then also we look for specific gene mutations through next-generation sequencing, or PCR testing. And so, we use all of those results together to give us the most information we can about that individual’s leukemia. 

Katherine Banwell:

How has molecular testing revolutionized AML care? 

Dr. Alice Mims:

Oh gracious. It’s really done such – so much for leukemia. And just things are so different even where they were five years ago because of having molecular mutations, that information available. 

So, it helps with discussing prognosis. So, we know that different molecular features can tell us about curative intent and what are the treatment steps we would need to take to give the best chance long-term. And then also now, we’ve evolved to where we have directed therapies that can target mutations or the proteins that arise from those mutations with therapeutic options. 

Katherine Banwell:

Is this testing standard following an AML diagnosis? 

Dr. Alice Mims:

It is standard following an AML diagnosis. That’s recommended within all of the guidelines with patients and really should be done for all patients at initial diagnosis. 

Katherine Banwell:

Can genetic markers or mutations change over time? For example, if a patient relapses, should molecular testing be done again? 

Dr. Alice Mims:

Yes, absolutely. Mutations can evolve. It’s something we call clonal evolution of the leukemia. 

And so you can have mutations that could be present at diagnosis that may no longer be present. Or the opposite can occur where you have new mutations that can appear. And that can lead to different options for treatment. So, it’s very important to retest at time of relapse.  

Katherine Banwell:

What advice do you have for patients who want to ensure that they’ve actually undergone molecular testing? What questions should they be asking their healthcare team? 

Dr. Alice Mims:

I think it’s definitely important to bring this up with the healthcare team. And it should be something at diagnosis and relapse to ask, what are the cytogenetics, what do they look like now, what do the gene mutations, and really as mentioned before, it’s so crucial in talking about prognosis, talking about treatment options that if it doesn’t come up, it’s really something that you should take a pause and try to go back to readdress with your team.  

PODCAST: Managing Life With AML | What You Should Know About Care and Treatment

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What do you need to know when it comes to managing life with acute myeloid leukemia (AML)? In this webinar, Dr. Alice Mims, an AML specialist and researcher, discusses how treatment decisions are made and how test results may impact therapy. Dr. Mims will shares the latest advances in research and key advice for living well with AML.

Dr. Alice Mims is a hematologist specializing in acute and chronic myeloid conditions. Dr. Mims serves as the Acute Leukemia Clinical Research Director at The Ohio State University Comprehensive Cancer Center – James. Learn more about Dr. Mims.

Download Resource Guide

See More from Thrive AML

Transcript:

Katherine Banwell:

Hello, and welcome. I’m Katherine Banwell, your host for today. Today’s program is a continuation of our Thrive series. And we’re going to discuss navigating life with AML, and how you can engage in your care. Before we get into the discussion, please remember that this program is not a substitute for seeking medical advice. Please refer to your healthcare team about what might be best for you. Well, joining us today is Dr. Alice Mims.  

Dr. Mims, welcome. Would you please introduce yourself? 

Dr. Alice Mims:

Yeah, sure. Thank you, Katherine. I’m Alice Mims. I’m a physician and associate professor at Ohio State University. And also, the section head for the myeloid and acute leukemia program within our division of hematology. 

Katherine Banwell:

Thank you so much for taking the time to join us today, Dr. Mims. We start all of our webinars in our thrive series with the same question; in your experience, what does it mean to thrive with AML? 

Dr. Alice Mims:

Sure, I think that’s a great question. So, really for me, I think thriving with AML is very patient- or person-dependent. It really depends on making sure that your treatment goals align with your care. And so that means really being an active participant in your diagnosis, understanding the disease process, and making sure that your care team really understands what your overall goals are for your treatment. 

Katherine Banwell:

Thank you for that because it helps us to understand as we move through the program today. One part of thriving with AML is finding a treatment approach that manages your disease and fits with your lifestyle. Before we talk about therapy, can you tell us how treatment goals are established for an individual patient? 

Dr. Alice Mims:

Sure. So, for individual patients I think it’s very important that there is an initial discussion that doesn’t feel too shortened that you can have time with your care team to really go into depth about the diagnosis, about the specifics of your particular subtype of acute myeloid leukemia, understanding the treatment options, and then being given time allowed to reflect on all of that information. So, then you can come back and have your questions better answered that may come from that initial discussion. 

And then help you with your team make a decision based on that information that works best for you. 

Katherine Banwell:

Outside of patient preference, what other factors do you take into account when working with a patient to decide on a treatment plan?  

Dr. Alice Mims:

Sure. So, there are multiple different factors that we try to take into account. Again, yeah most importantly what patients’ goals are like you mentioned, but those include overall health, including different comorbidities, so what other healthcare diagnoses, medications are you taking, what are the patient’s age, thinking about that for long-term goals, overall support from loved ones, family to — just because care can be really involved. And then in particular, thinking about specific features of that individual patient’s AML, including molecular, genetic features of the leukemia. 

Katherine Banwell:

Well, let’s talk more in depth about the test results you just mentioned. 

What is the test for genetic markers? And how is it conducted? 

Dr. Alice Mims:

So, there are a few different tests that we use under that scope of genetic markers. So, those include looking at chromosomal abnormalities of the DNA. So, with cytogenetics, and then also more specific prose where we call FISH testing. And then also we look for specific gene mutations through next generation sequencing, or PCR testing. And so, we use all of those results together to give us the most information we can about that individual’s leukemia. 

Katherine Banwell:

How has molecular testing revolutionized AML care?  

Dr. Alice Mims:

Oh gracious. It’s really done such – so much for leukemia. And just things are so different even where they were five years ago because of having molecular mutations, that information available. 

So, it helps with discussing prognosis. So, we know that different molecular features can tell us about curative intent and what are the treatment steps we would need to take to give the best chance long-term. And then also now, we’ve evolved to where we have directed therapies that can target mutations or the proteins that arise from those mutations with therapeutic options. 

Katherine Banwell:

Is this testing standard following an AML diagnosis? 

Dr. Alice Mims:

It is standard following an AML diagnosis. That’s recommended within all of the guidelines with patients and really should be done for all patients at initial diagnosis. 

Katherine Banwell:

Can genetic markers or mutations change over time? For example, if a patient relapses, should molecular testing be done again? 

Dr. Alice Mims:

Yes, absolutely. Mutations can evolve. It’s something we call clonal evolution of the leukemia. 

And so you can have mutations that could be present at diagnosis that may no longer be present. Or the opposite can occur where you have new mutations that can appear. And that can lead to different options for treatment. So, it’s very important to retest at time of relapse. 

Katherine Banwell:

What advice do you have for patients who want to ensure that they’ve actually undergone molecular testing? What questions should they be asking their healthcare team? 

Dr. Alice Mims:

I think it’s definitely important to bring this up with the healthcare team. And it should be something at diagnosis and relapse to ask, what are the cytogenetics, what do they look like now, what do the gene mutations, and really as mentioned before, it’s so crucial in talking about prognosis, talking about treatment options that if it doesn’t come up, it’s really something that you should take a pause and try to go back to readdress with your team. 

Katherine Banwell:

I’d like to move on to treatment now, Dr. Mims. And, of course, treatment takes place in phases for AML. The first is induction therapy. Can you start by defining induction therapy for our audience? 

Dr. Alice Mims:

Sure. So, induction therapy is really terminology that we use to talk about initial therapy for someone with a new diagnosis. So, we can have intensive induction therapies, and non-intensive induction therapies. But the goal for either of those types of treatment is to get the leukemia into remission. 

So, to talk about that in a little bit more detail, for intensive induction regimens, those typically involve cytotoxic chemotherapy. So, you may hear terminology like, “7 + 3 induction,” or “high-dose cytarabine regimens,” but those are typically more intensive regimens that we use that can have increased side effects but may be very important based off the type of acute leukemia. 

And then for non-intensive based regimens, one of the standards has really evolved to be venetoclax (Venclexta) and azacitidine (Vidaza) as a non-intensive regimen that can work very well for a majority of patients. And there are some off shoots of that as well. 

Katherine Banwell:

Okay. And when does stem cell transplant come into play? 

Dr. Alice Mims:

Sure. So, stem cell transplant is something that we all think about at the beginning for anyone with a new diagnosis of acute myeloid leukemia where as we’re working to get back genomic information about the individual’s acute leukemia, we may go ahead and start looking for different donors, doing typing, just in case that’s something that we need as far as someone’s therapy. 

But typically we reserve stem cell transplant for patients who have either intermediate or high-risk features of their AML. Or who may have even favorable respite are not responding as well as we would like when looking at the depth of remission. And so, we always want  to be prepared in case that’s something we need to move forward with as part of their care, if the goal of their treatment is for curative intent. 

Katherine Banwell:

Let’s talk about what happens after the initial phase of treatment. What’s the purpose of consolidation therapy? 

Dr. Alice Mims:

Sure. So, there are a few different purposes we can use consolidation therapy for. So, for patients – consolidation therapy is used for patients who have achieved remission. And then it’s either to try to hopefully get them cure of their AML. The patients have more favorable risk features of their AML and cure is an option through just chemotherapy alone. 

Or it can be used to try to keep people in remission while we’re working to get towards stem cell transplant as that can sometimes take a few months to get a donor ready, have things ready to move forward with transplant. 

Katherine Banwell:

And what are the options for consolidation therapy?  

Dr. Alice Mims:

Sure. So, options for consolidated chemotherapy are typically based off of what you had initially for induction chemotherapy. So, if it’s more intensive-based regimens, it typically is consolidation with intensive consolidation, cytarabine based regimens.  

For lower intensity regimens, typically consolidation is more continuing therapy on what you started but may have adjustments of the treatment based off of trying to decrease the toxicity now that the patients are in remission. 

Katherine Banwell:

And how are patients monitored in consolidation therapy? 

Dr. Alice Mims:

Sure. So, it definitely is based off of the individual’s type of consolidation chemotherapy or treatment. But most patients, if we feel like the treatment is going to lower blood counts, they have bloodwork twice a week, and we’re watching for things, for side effects for treatment, looking out for risk of infection, giving transfusion support, and then if something happens that we feel like we can’t support patients in an outpatient setting, then we’ll get them back into the hospital if they need to for care. 

Katherine Banwell:

What side effects are you looking for?  

Dr. Alice Mims:

So, most of the side effects with any of the treatments that we give are what we call myelosuppressives. So, it lowers the different types of blood counts.   

So, white blood cell count which increases risk of infection, red blood cells, so, side effects or symptoms from anemia. And then risk of bleeding from low platelet counts.  

Katherine Banwell:

Okay. Maintenance therapy has become more common in other blood cancers particularly in multiple myeloma. Is there a role for maintenance therapy in AML? 

Dr. Alice Mims:

There actually is now, which is something that’s newer that has evolved for acute myeloma leukemia. So, in the context of intensive therapy, we now have oral azacitidine (Onureg), which is a little bit different than some of the IV formulations that we give.  

But for patients who receive intensive induction therapy, get into remission and may receive consolidation but are not able to go onto transplant if they have that immediate or higher risk features, there’s FDA approval for oral azacytidine, which has been shown to improve overall survival and keep people in those remissions for longer. 

More recently, specifically for patients who have a particular type of mutation called FLT3, if they also receive intensive induction therapy with a FLT3 inhibitor added onto that, then their quizartinib was just recently approved as a maintenance therapy for patients with that particular type of AML.  

Katherine Banwell:

Are there emerging AML therapies that patients should know about other than what you just mentioned? 

Dr. Alice Mims:

Sure. So, I think there are a lot of exciting treatments that are up and coming based off of many small molecule inhibitors that are being studied. 

One in particular I would mention that everyone’s very excited about is a class of agents called menin inhibitors.  

And so that’s an oral agent that has been shown to have responses for patients with relapse or refractory AML who have NMP-1 mutations or have something called KNT2A rearrangements. And seeing responses with just a single agent in the relapse refractory setting, it’s been really exciting. And so, I think we’re hopeful that that may become FDA-approved in the near future. And it’s also now being explored in combination with intensive chemotherapies as well as less intensive induction regimens. And so, maybe we can do a better job without brunt treatment by adding these therapies on. 

Katherine Banwell:

That’s exciting news. When it comes to living and thriving with AML, Dr. Mims, managing disease symptoms and treatment side effects is a big part of that. 

Would you talk about how symptoms and side effects can impact life with AML?  

Dr. Alice Mims:

Sure. So, I think from my perspective, what we are always trying to do when we’re moving forward with a treatment plan is of course, get patients into remission, but the purpose of getting into remission is not just to achieve that, but for patients to have quality of life. And so, there needs to be continued dialogue between the patient and the treatment team about how you’re feeling during treatment. Because they’re definitely based off of therapy, different side effects, things that could be not necessarily due to active leukemia anymore. And so there may need to be dose adjustments and other things that we do to the regimens in order to make you feel as good as possible while continuing on treatment. 

Katherine Banwell:

Why is it so important for patients to speak up about any issues they may be having? 

Dr. Alice Mims:

I think it’s important because you’re your own best advocate. Being the patient, being the person who’s living with having this diagnosis and going through the treatment, myself, or other colleagues as physicians, we can have a sense of what may be going on based off of numbers. But we’re not truly going to know how you’re feeling unless you speak up and let us know. And there may be things we could do with supportive medications, dosing adjustments as mentioned, that could help in making you hopefully feel better and less side effects and toxicities from treatment. 

Katherine Banwell:

What are some common symptoms and side effects that you hear about?  

Dr. Alice Mims:

Okay. Sure. So, different side effects that I would say that people can have, people can feel fatigued just from treatment in general. Some of our therapies can cause neuropathy, skin rashes, nausea, vomiting, diarrhea. And so, all of those are important along as mentioned with symptoms you may have from decreased blood counts that we do have interventions that we could implement to help the – make the therapy more tolerable. 

Katherine Banwell:

So, for the side effects like fatigue for example, what do you do about that? 

Dr. Alice Mims:

So, I think it depends on the level of fatigue. Of course, we don’t have – I wish we had a pill that could just make fatigue improve. But if it’s really that the treatment is deriving it, and it’s impeding your quality of life there are dose reductions or things we can do that may help with the level of fatigue you’re experiencing.  

Katherine Banwell:

And what about some of the other side effects. You mentioned diarrhea. 

Dr. Alice Mims:

Sure.  

Katherine Banwell:

How is that handled? 

Dr. Alice Mims:

Yeah. So, for issues from GI complications such as nausea, vomiting, diarrhea, we have really lots of choices for anti-nausea medicines and different combinations we can use or newer antiemetics that can help with that. And from a diarrhea perspective it depends on the treatment. But of course, we want to make sure first and foremost there’s no infection. And if not, then there are good antidiarrheals we could add on to the regiment to help with that as well. 

Katherine Banwell:

Okay. That’s great advice. Thank you. I want to make sure that we get to some of the audience questions. These were sent to us in advance of the program today. Let’s start with this one; Janet wants to know what factors enable a patient to achieve and continue in remission if they are not able to achieve stem cell transplant due to age restrictions.  

Dr. Alice Mims:

So, I think first and foremost, I think it’s very important that there — that patients are aware that there shouldn’t be just strict, stringent cutoffs of age as a requirement for stem cell transplant. And really, there’s a lot of research going on that we should take into account. Physiological age, and there’s ways to measure that just to be sure that stem cell transplant really is not an option. And for patients who stem cell transplant is not an option, I think as we talked about earlier, so there can still be really great treatments that can get patients into remission and ongoing therapies with dosing adjustments again to decrease toxicity and improve quality of life and thinking about things like maintenance therapy as appropriate. 

Katherine Banwell:

What are the age restrictions, and why are they there? 

Dr. Alice Mims:

So, sometimes you will hear age 75.

Really, no one above age 75 should move forward with transplant. And that’s based off of past data where they’ve explored transplant and seen increased toxicity. And from transplant in itself, increased side effects, increased risk of early mortality. And so, I do think it’s important to take the patient as a whole into consideration because again, you could have someone who’s 77 who may be running marathons, and in great shape, and not a lot of other healthcare issues, who may still do really well with treatment. And so, I think that’s – really needs to be taken in account, really the overall picture of health for the patient before making… 

Katherine Banwell:

So, the… 

Dr. Alice Mims:

…just a firm cutoff. 

Katherine Banwell:

Right. Okay. So, it’s not cut and dry. 

Dr. Alice Mims:

Exactly. 

Katherine Banwell:

If you’re 75 or older, then you definitely can’t have stem cell transplant. 

Dr. Alice Mims:

That’s correct. 

Katherine Banwell:

Then you’re looking at everyone individually. 

Dr. Alice Mims:

Yeah. So, it really should be looked at.  

And I still have some patients who will come to me and say, “Oh, I was told I’m 68 years old, I’m not a candidate.” And that always makes me take a step back. And then we kind of have to have that discussion again. And they may still not be a good candidate based off of other comorbidities or healthcare issues, but it shouldn’t just be a number rules you out for having that as an option. 

Katherine Banwell:

Good to know. We received this question from Carl, “What does treatment look like following transplant? And what are doctors looking for when monitoring through blood tests?” 

Dr. Alice Mims:

Sure. So, after transplant, the first three months is pretty intensive of being seen very frequently at your transplant center twice to once a week. You’re also on immunosuppressive medications to try to help prevent issues like graft vs host disease, which can be a complication from transplant. 

And then over time if you’re doing well, we try to start tapering off those immunosuppressive regimens to see if you can tolerate that. And what I say to most of my patients for – who are undergoing transplant, it can take some time to really feel back to being yourself. It can take six months, it can take a year or longer. And sometimes your normal is a new normal based off of how you do and the side effects of the transplant in itself. So, you may not go back to if you’re here before transplant and before your diagnosis, it may be that this is your new normal. Just so people can be prepared and know what they’re signing up for.  

Katherine Banwell:

And with the blood testing, what are you looking for when you’re monitoring a patient?  

Dr. Alice Mims:

Sure. There are a few different things that we’re looking for when monitoring patients. So, one, making sure that the stem cells or the graft from the donor are recovering. 

You want to see that blood counts, levels of white blood cells, red blood cells, platelets are getting to normal levels. You’re also assessing and making sure you’re not seeing signs of relapse. You’re checking levels of donor cells versus the patient cells within the stem cell — sorry, within the stem cell compartments. And so, we’re taking all of those into account as well as checking organ function and making sure there’s no signs of potential graft versus host disease as well. 

Katherine Banwell:

Katrina sent in this question; do you have any advice for dealing with a general oncologist who does not exactly follow my AML doctor’s recommendations? I see a local oncologist and an AML specialist guides my care. 

Dr. Alice Mims:

I think that’s a tough question. And so, I think I’ll answer that if – maybe two different ways. 

So, one, I think sometimes it’s hard when you’re the local community oncologist, and you’re there for the day-to-day care. And so there may need to be treatment adjustments and other things that you need to do in that moment or time to help make sure that toxicities are not too severe or are helping the patient as you’re seeing them day-to-day. And it may not be easy to involve the specialist right there in the moment. But I think if there are bigger issues as far as overall goals, overall communication, it should be that both are able to communicate well with each other. They should be able to communicate via email, via text message. That’s what I do with a lot of my community partners. And it’s always important that you as a patient feel confident in your care. And so, if that trust is not there that things are being followed, then it may be important to look and see if there’s another physician who you do feel comfortable with proceeding with your care with. 

Katherine Banwell:

And what do you tell patients when they’re not feeling comfortable with their care team or their oncologist or their general oncologist? What do you say to them to give them some confidence to find somebody else who they feel more comfortable with? 

Dr. Alice Mims:

Sure. So, I’ll just say from my perspective. So, if I’m seeing a patient and they may have questions, they may not feel comfortable, they may need more time. And I always think it’s important if you want a second opinion, whether it’s at a specialist level, whether it’s in a community oncology private setting, that should not be offensive to the physician.  

If that makes the patient feel more comfortable in what they’re doing with their care, that’s how they should move forward. And it should be what they feel like is best. If a physician takes that personally or is offended by it, I think that’s more of their problem as opposed to anything that you’re doing wrong.  

Katherine Banwell:

Okay. Thank you for that. Ryan wants to know; I’m a year and a half post-transplant, how can you tell if the aches and pains in your joints are normal aging, host vs graft disease, the AML returning, or even something else? 

Dr. Alice Mims:

So, I think that’s also a difficult question to answer because it really is patient dependent. And so, I think if you’re having new joint aches or pains, it’s always important to reach out to your transplant team to make sure that – it could be any of the above.. 

And so you’re doing the appropriate workup with lab work, imaging, things that would be appropriate or seeing certain specialists. Maybe orthopedist if needed because it could be I’d say less likely leukemic relapse, but still want to be sure. But it could be definitely complications from GVHD or there’s some joint issues that can evolve post-transplant, especially for people who are on long-term immunosuppressant medications. Or it could be the normal effects of aging. So, it’s always good to have that reassurance. 

Katherine Banwell:

Let’s talk a little bit about mental health resources. Managing the worry associated with a diagnosis or concerns about relapse, or even various side effects can lead to emotional symptoms like anxiety and fear.  

Why is it important for people with AML to share how they’re feeling with their healthcare team? 

Dr. Alice Mims:

So, I think it’s very important because, one, all of those feelings are normal feelings. I think they’re sometimes that from going through such a rapid diagnosis and then having to start treatment pretty quickly and going through all the ups and downs with these types of diagnosis can really lead to for some patients PTSD-type symptoms. And then there are also things that can evolve over time where their anxiety or even survivorship guilt as you go if you move forward and are doing well where you may have some friends or people you met along the way who may not have had as good outcomes. And so, there are resources available based off of where you are.  

But for survivorship, oncology specific counseling to deal with some of these feelings that are understandable and normal for what patients have been through. 

Katherine Banwell:

Can a social worker help? And are there other people on the healthcare team who can support a patient’s emotional needs? 

Dr. Alice Mims:

Oh, absolutely. So, I think it’s really place-dependent on where you are but yes, absolutely. Social workers are a great resource for patients. There may be other collaborative teams based off of where you’re receiving your treatment that may be available that are maybe patient support groups where you can go and be with other patients or Facebook, social media support groups. And I think all those can be very helpful. And I know at least at our center, we also have patient mentors who have been through and gotten through to the other side of transplant or whatnot who are great resources because they’ve lived and experienced it. 

And I think that’s just as a physician, I can talk about things that I don’t have that personal experience having lived through it. And I think that’s very important — 

Katherine Banwell:

Yeah. It’s a… 

Dr. Alice Mims:

…to be able to have somebody to talk to. Yeah. 

Katherine Banwell:

Yeah. What about the financial aspect of treatments? There are many people who would find it difficult to find and maybe they don’t have insurance, or their insurance doesn’t cover a lot. How do you help patients who are dealing with financial restrictions?  

Dr. Alice Mims:

Sure. So, I think that we’re fortunate here because we have a lot of support staff to help patients with our financial counseling team. We also have people within the medication assistance programs who can help find foundation grants to help with medication support, travel support. 

I think for patients who may not have those things available at their individual center, The Leukemia & Lymphoma Society is a great place to reach out for.  

And there are other foundations as well who at least may have navigators to help patients figure out other resources or funding available. 

Katherine Banwell:

Yeah. Okay. That’s really good information, Dr. Mims. Thank you. And please continue to send in your questions to question@powerfulpatients.org and we’ll work to get them answered on future programs. Well, Dr. Mims as we close out our program, I wanted to get your thoughts on where we stand with progress in AML care. Are there advances in research treatment that you’re hopeful about? 

Dr. Alice Mims:

Yes. I would say from even when I finished fellowship 10 years ago, not to state my age, but we had essentially about three treatments at that time. 

Now in the past five years there have been I think maybe 11 different new drugs that have been approved for a acute myeloma leukemia. And so, I think we’re just on the precipice of really evolving to have individualized care. Hopefully have more curative options for patients. So, I’m really excited for the time we’re in right now where I even hope we’ll be in the next five years for patients. 

Katherine Banwell:

That’s an encouraging message to leave the audience with, Dr. Mims. Thank you so much for joining us today. 

Dr. Alice Mims:

Thank you so much for letting me be here with you today. 

Katherine Banwell:

And thank you to all of our collaborators. To learn more about AML and to access tools to help you become a proactive patient, visit powerfulpatients.org. I’m Katherine Banwell. Thanks for joining us today.   

Managing Life With AML | What You Should Know About Care and Treatment

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Managing Life With AML | What You Should Know About Care and Treatment from Patient Empowerment Network on Vimeo. 

What do you need to know when it comes to managing life with acute myeloid leukemia (AML)? In this webinar, Dr. Alice Mims, an AML specialist and researcher, discusses how treatment decisions are made and how test results may impact therapy. Dr. Mims will shares the latest advances in research and key advice for living well with AML.

Dr. Alice Mims is a hematologist specializing in acute and chronic myeloid conditions. Dr. Mims serves as the Acute Leukemia Clinical Research Director at The Ohio State University Comprehensive Cancer Center – James. Learn more about Dr. Mims.

Download Resource Guide

See More from Thrive AML

Related Resources:

AML Treatment Decisions | Understanding Factors That Impact Your Options

 AML Specialists and Second Opinions Expert Advice to Patients

 How Can You Thrive With AML Advice for Navigating Care.

Transcript:

Katherine Banwell:

Hello, and welcome. I’m Katherine Banwell, your host for today. Today’s program is a continuation of our Thrive series. And we’re going to discuss navigating life with AML, and how you can engage in your care. Before we get into the discussion, please remember that this program is not a substitute for seeking medical advice. Please refer to your healthcare team about what might be best for you. Well, joining us today is Dr. Alice Mims.  

Dr. Mims, welcome. Would you please introduce yourself? 

Dr. Alice Mims:

Yeah, sure. Thank you, Katherine. I’m Alice Mims. I’m a physician and associate professor at Ohio State University. And also, the section head for the myeloid and acute leukemia program within our division of hematology. 

Katherine Banwell:

Thank you so much for taking the time to join us today, Dr. Mims. We start all of our webinars in our thrive series with the same question; in your experience, what does it mean to thrive with AML? 

Dr. Alice Mims:

Sure, I think that’s a great question. So, really for me, I think thriving with AML is very patient- or person-dependent. It really depends on making sure that your treatment goals align with your care. And so that means really being an active participant in your diagnosis, understanding the disease process, and making sure that your care team really understands what your overall goals are for your treatment. 

Katherine Banwell:

Thank you for that because it helps us to understand as we move through the program today. One part of thriving with AML is finding a treatment approach that manages your disease and fits with your lifestyle. Before we talk about therapy, can you tell us how treatment goals are established for an individual patient? 

Dr. Alice Mims:

Sure. So, for individual patients I think it’s very important that there is an initial discussion that doesn’t feel too shortened that you can have time with your care team to really go into depth about the diagnosis, about the specifics of your particular subtype of acute myeloid leukemia, understanding the treatment options, and then being given time allowed to reflect on all of that information. So, then you can come back and have your questions better answered that may come from that initial discussion. 

And then help you with your team make a decision based on that information that works best for you. 

Katherine Banwell:

Outside of patient preference, what other factors do you take into account when working with a patient to decide on a treatment plan?  

Dr. Alice Mims:

Sure. So, there are multiple different factors that we try to take into account. Again, yeah most importantly what patients’ goals are like you mentioned, but those include overall health, including different comorbidities, so what other healthcare diagnoses, medications are you taking, what are the patient’s age, thinking about that for long-term goals, overall support from loved ones, family to — just because care can be really involved. And then in particular, thinking about specific features of that individual patient’s AML, including molecular, genetic features of the leukemia. 

Katherine Banwell:

Well, let’s talk more in depth about the test results you just mentioned. 

What is the test for genetic markers? And how is it conducted? 

Dr. Alice Mims:

So, there are a few different tests that we use under that scope of genetic markers. So, those include looking at chromosomal abnormalities of the DNA. So, with cytogenetics, and then also more specific prose where we call FISH testing. And then also we look for specific gene mutations through next generation sequencing, or PCR testing. And so, we use all of those results together to give us the most information we can about that individual’s leukemia. 

Katherine Banwell:

How has molecular testing revolutionized AML care?  

Dr. Alice Mims:

Oh gracious. It’s really done such – so much for leukemia. And just things are so different even where they were five years ago because of having molecular mutations, that information available. 

So, it helps with discussing prognosis. So, we know that different molecular features can tell us about curative intent and what are the treatment steps we would need to take to give the best chance long-term. And then also now, we’ve evolved to where we have directed therapies that can target mutations or the proteins that arise from those mutations with therapeutic options. 

Katherine Banwell:

Is this testing standard following an AML diagnosis? 

Dr. Alice Mims:

It is standard following an AML diagnosis. That’s recommended within all of the guidelines with patients and really should be done for all patients at initial diagnosis. 

Katherine Banwell:

Can genetic markers or mutations change over time? For example, if a patient relapses, should molecular testing be done again? 

Dr. Alice Mims:

Yes, absolutely. Mutations can evolve. It’s something we call clonal evolution of the leukemia. 

And so you can have mutations that could be present at diagnosis that may no longer be present. Or the opposite can occur where you have new mutations that can appear. And that can lead to different options for treatment. So, it’s very important to retest at time of relapse. 

Katherine Banwell:

What advice do you have for patients who want to ensure that they’ve actually undergone molecular testing? What questions should they be asking their healthcare team? 

Dr. Alice Mims:

I think it’s definitely important to bring this up with the healthcare team. And it should be something at diagnosis and relapse to ask, what are the cytogenetics, what do they look like now, what do the gene mutations, and really as mentioned before, it’s so crucial in talking about prognosis, talking about treatment options that if it doesn’t come up, it’s really something that you should take a pause and try to go back to readdress with your team. 

Katherine Banwell:

I’d like to move on to treatment now, Dr. Mims. And, of course, treatment takes place in phases for AML. The first is induction therapy. Can you start by defining induction therapy for our audience? 

Dr. Alice Mims:

Sure. So, induction therapy is really terminology that we use to talk about initial therapy for someone with a new diagnosis. So, we can have intensive induction therapies, and non-intensive induction therapies. But the goal for either of those types of treatment is to get the leukemia into remission. 

So, to talk about that in a little bit more detail, for intensive induction regimens, those typically involve cytotoxic chemotherapy. So, you may hear terminology like, “7 + 3 induction,” or “high-dose cytarabine regimens,” but those are typically more intensive regimens that we use that can have increased side effects but may be very important based off the type of acute leukemia. 

And then for non-intensive based regimens, one of the standards has really evolved to be venetoclax (Venclexta) and azacitidine (Vidaza) as a non-intensive regimen that can work very well for a majority of patients. And there are some off shoots of that as well. 

Katherine Banwell:

Okay. And when does stem cell transplant come into play? 

Dr. Alice Mims:

Sure. So, stem cell transplant is something that we all think about at the beginning for anyone with a new diagnosis of acute myeloid leukemia where as we’re working to get back genomic information about the individual’s acute leukemia, we may go ahead and start looking for different donors, doing typing, just in case that’s something that we need as far as someone’s therapy. 

But typically we reserve stem cell transplant for patients who have either intermediate or high-risk features of their AML. Or who may have even favorable respite are not responding as well as we would like when looking at the depth of remission. And so, we always want  to be prepared in case that’s something we need to move forward with as part of their care, if the goal of their treatment is for curative intent. 

Katherine Banwell:

Let’s talk about what happens after the initial phase of treatment. What’s the purpose of consolidation therapy? 

Dr. Alice Mims:

Sure. So, there are a few different purposes we can use consolidation therapy for. So, for patients – consolidation therapy is used for patients who have achieved remission. And then it’s either to try to hopefully get them cure of their AML. The patients have more favorable risk features of their AML and cure is an option through just chemotherapy alone. 

Or it can be used to try to keep people in remission while we’re working to get towards stem cell transplant as that can sometimes take a few months to get a donor ready, have things ready to move forward with transplant. 

Katherine Banwell:

And what are the options for consolidation therapy?  

Dr. Alice Mims:

Sure. So, options for consolidated chemotherapy are typically based off of what you had initially for induction chemotherapy. So, if it’s more intensive-based regimens, it typically is consolidation with intensive consolidation, cytarabine based regimens.  

For lower intensity regimens, typically consolidation is more continuing therapy on what you started but may have adjustments of the treatment based off of trying to decrease the toxicity now that the patients are in remission. 

Katherine Banwell:

And how are patients monitored in consolidation therapy? 

Dr. Alice Mims:

Sure. So, it definitely is based off of the individual’s type of consolidation chemotherapy or treatment. But most patients, if we feel like the treatment is going to lower blood counts, they have bloodwork twice a week, and we’re watching for things, for side effects for treatment, looking out for risk of infection, giving transfusion support, and then if something happens that we feel like we can’t support patients in an outpatient setting, then we’ll get them back into the hospital if they need to for care. 

Katherine Banwell:

What side effects are you looking for?  

Dr. Alice Mims:

So, most of the side effects with any of the treatments that we give are what we call myelosuppressives. So, it lowers the different types of blood counts.   

So, white blood cell count which increases risk of infection, red blood cells, so, side effects or symptoms from anemia. And then risk of bleeding from low platelet counts.  

Katherine Banwell:

Okay. Maintenance therapy has become more common in other blood cancers particularly in multiple myeloma. Is there a role for maintenance therapy in AML? 

Dr. Alice Mims:

There actually is now, which is something that’s newer that has evolved for acute myeloma leukemia. So, in the context of intensive therapy, we now have oral azacitidine (Onureg), which is a little bit different than some of the IV formulations that we give.  

But for patients who receive intensive induction therapy, get into remission and may receive consolidation but are not able to go onto transplant if they have that immediate or higher risk features, there’s FDA approval for oral azacytidine, which has been shown to improve overall survival and keep people in those remissions for longer. 

More recently, specifically for patients who have a particular type of mutation called FLT3, if they also receive intensive induction therapy with a FLT3 inhibitor added onto that, then their quizartinib was just recently approved as a maintenance therapy for patients with that particular type of AML.  

Katherine Banwell:

Are there emerging AML therapies that patients should know about other than what you just mentioned? 

Dr. Alice Mims:

Sure. So, I think there are a lot of exciting treatments that are up and coming based off of many small molecule inhibitors that are being studied. 

One in particular I would mention that everyone’s very excited about is a class of agents called menin inhibitors.  

And so that’s an oral agent that has been shown to have responses for patients with relapse or refractory AML who have NMP-1 mutations or have something called KNT2A rearrangements. And seeing responses with just a single agent in the relapse refractory setting, it’s been really exciting. And so, I think we’re hopeful that that may become FDA-approved in the near future. And it’s also now being explored in combination with intensive chemotherapies as well as less intensive induction regimens. And so, maybe we can do a better job without brunt treatment by adding these therapies on. 

Katherine Banwell:

That’s exciting news. When it comes to living and thriving with AML, Dr. Mims, managing disease symptoms and treatment side effects is a big part of that. 

Would you talk about how symptoms and side effects can impact life with AML?  

Dr. Alice Mims:

Sure. So, I think from my perspective, what we are always trying to do when we’re moving forward with a treatment plan is of course, get patients into remission, but the purpose of getting into remission is not just to achieve that, but for patients to have quality of life. And so, there needs to be continued dialogue between the patient and the treatment team about how you’re feeling during treatment. Because they’re definitely based off of therapy, different side effects, things that could be not necessarily due to active leukemia anymore. And so there may need to be dose adjustments and other things that we do to the regimens in order to make you feel as good as possible while continuing on treatment. 

Katherine Banwell:

Why is it so important for patients to speak up about any issues they may be having? 

Dr. Alice Mims:

I think it’s important because you’re your own best advocate. Being the patient, being the person who’s living with having this diagnosis and going through the treatment, myself, or other colleagues as physicians, we can have a sense of what may be going on based off of numbers. But we’re not truly going to know how you’re feeling unless you speak up and let us know. And there may be things we could do with supportive medications, dosing adjustments as mentioned, that could help in making you hopefully feel better and less side effects and toxicities from treatment. 

Katherine Banwell:

What are some common symptoms and side effects that you hear about?  

Dr. Alice Mims:

Okay. Sure. So, different side effects that I would say that people can have, people can feel fatigued just from treatment in general. Some of our therapies can cause neuropathy, skin rashes, nausea, vomiting, diarrhea. And so, all of those are important along as mentioned with symptoms you may have from decreased blood counts that we do have interventions that we could implement to help the – make the therapy more tolerable. 

Katherine Banwell:

So, for the side effects like fatigue for example, what do you do about that? 

Dr. Alice Mims:

So, I think it depends on the level of fatigue. Of course, we don’t have – I wish we had a pill that could just make fatigue improve. But if it’s really that the treatment is deriving it, and it’s impeding your quality of life there are dose reductions or things we can do that may help with the level of fatigue you’re experiencing.  

Katherine Banwell:

And what about some of the other side effects. You mentioned diarrhea. 

Dr. Alice Mims:

Sure.  

Katherine Banwell:

How is that handled? 

Dr. Alice Mims:

Yeah. So, for issues from GI complications such as nausea, vomiting, diarrhea, we have really lots of choices for anti-nausea medicines and different combinations we can use or newer antiemetics that can help with that. And from a diarrhea perspective it depends on the treatment. But of course, we want to make sure first and foremost there’s no infection. And if not, then there are good antidiarrheals we could add on to the regiment to help with that as well. 

Katherine Banwell:

Okay. That’s great advice. Thank you. I want to make sure that we get to some of the audience questions. These were sent to us in advance of the program today. Let’s start with this one; Janet wants to know what factors enable a patient to achieve and continue in remission if they are not able to achieve stem cell transplant due to age restrictions.  

Dr. Alice Mims:

So, I think first and foremost, I think it’s very important that there — that patients are aware that there shouldn’t be just strict, stringent cutoffs of age as a requirement for stem cell transplant. And really, there’s a lot of research going on that we should take into account. Physiological age, and there’s ways to measure that just to be sure that stem cell transplant really is not an option. And for patients who stem cell transplant is not an option, I think as we talked about earlier, so there can still be really great treatments that can get patients into remission and ongoing therapies with dosing adjustments again to decrease toxicity and improve quality of life and thinking about things like maintenance therapy as appropriate. 

Katherine Banwell:

What are the age restrictions, and why are they there? 

Dr. Alice Mims:

So, sometimes you will hear age 75.

Really, no one above age 75 should move forward with transplant. And that’s based off of past data where they’ve explored transplant and seen increased toxicity. And from transplant in itself, increased side effects, increased risk of early mortality. And so, I do think it’s important to take the patient as a whole into consideration because again, you could have someone who’s 77 who may be running marathons, and in great shape, and not a lot of other healthcare issues, who may still do really well with treatment. And so, I think that’s – really needs to be taken in account, really the overall picture of health for the patient before making… 

Katherine Banwell:

So, the… 

Dr. Alice Mims:

…just a firm cutoff. 

Katherine Banwell:

Right. Okay. So, it’s not cut and dry. 

Dr. Alice Mims:

Exactly. 

Katherine Banwell:

If you’re 75 or older, then you definitely can’t have stem cell transplant. 

Dr. Alice Mims:

That’s correct. 

Katherine Banwell:

Then you’re looking at everyone individually. 

Dr. Alice Mims:

Yeah. So, it really should be looked at.  

And I still have some patients who will come to me and say, “Oh, I was told I’m 68 years old, I’m not a candidate.” And that always makes me take a step back. And then we kind of have to have that discussion again. And they may still not be a good candidate based off of other comorbidities or healthcare issues, but it shouldn’t just be a number rules you out for having that as an option. 

Katherine Banwell:

Good to know. We received this question from Carl, “What does treatment look like following transplant? And what are doctors looking for when monitoring through blood tests?” 

Dr. Alice Mims:

Sure. So, after transplant, the first three months is pretty intensive of being seen very frequently at your transplant center twice to once a week. You’re also on immunosuppressive medications to try to help prevent issues like graft vs host disease, which can be a complication from transplant. 

And then over time if you’re doing well, we try to start tapering off those immunosuppressive regimens to see if you can tolerate that. And what I say to most of my patients for – who are undergoing transplant, it can take some time to really feel back to being yourself. It can take six months, it can take a year or longer. And sometimes your normal is a new normal based off of how you do and the side effects of the transplant in itself. So, you may not go back to if you’re here before transplant and before your diagnosis, it may be that this is your new normal. Just so people can be prepared and know what they’re signing up for.  

Katherine Banwell:

And with the blood testing, what are you looking for when you’re monitoring a patient?  

Dr. Alice Mims:

Sure. There are a few different things that we’re looking for when monitoring patients. So, one, making sure that the stem cells or the graft from the donor are recovering. 

You want to see that blood counts, levels of white blood cells, red blood cells, platelets are getting to normal levels. You’re also assessing and making sure you’re not seeing signs of relapse. You’re checking levels of donor cells versus the patient cells within the stem cell — sorry, within the stem cell compartments. And so, we’re taking all of those into account as well as checking organ function and making sure there’s no signs of potential graft versus host disease as well. 

Katherine Banwell:

Katrina sent in this question; do you have any advice for dealing with a general oncologist who does not exactly follow my AML doctor’s recommendations? I see a local oncologist and an AML specialist guides my care. 

Dr. Alice Mims:

I think that’s a tough question. And so, I think I’ll answer that if – maybe two different ways. 

So, one, I think sometimes it’s hard when you’re the local community oncologist, and you’re there for the day-to-day care. And so there may need to be treatment adjustments and other things that you need to do in that moment or time to help make sure that toxicities are not too severe or are helping the patient as you’re seeing them day-to-day. And it may not be easy to involve the specialist right there in the moment. But I think if there are bigger issues as far as overall goals, overall communication, it should be that both are able to communicate well with each other. They should be able to communicate via email, via text message. That’s what I do with a lot of my community partners. And it’s always important that you as a patient feel confident in your care. And so, if that trust is not there that things are being followed, then it may be important to look and see if there’s another physician who you do feel comfortable with proceeding with your care with. 

Katherine Banwell:

And what do you tell patients when they’re not feeling comfortable with their care team or their oncologist or their general oncologist? What do you say to them to give them some confidence to find somebody else who they feel more comfortable with? 

Dr. Alice Mims:

Sure. So, I’ll just say from my perspective. So, if I’m seeing a patient and they may have questions, they may not feel comfortable, they may need more time. And I always think it’s important if you want a second opinion, whether it’s at a specialist level, whether it’s in a community oncology private setting, that should not be offensive to the physician.  

If that makes the patient feel more comfortable in what they’re doing with their care, that’s how they should move forward. And it should be what they feel like is best. If a physician takes that personally or is offended by it, I think that’s more of their problem as opposed to anything that you’re doing wrong.  

Katherine Banwell:

Okay. Thank you for that. Ryan wants to know; I’m a year and a half post-transplant, how can you tell if the aches and pains in your joints are normal aging, host vs graft disease, the AML returning, or even something else? 

Dr. Alice Mims:

So, I think that’s also a difficult question to answer because it really is patient dependent. And so, I think if you’re having new joint aches or pains, it’s always important to reach out to your transplant team to make sure that – it could be any of the above.. 

And so you’re doing the appropriate workup with lab work, imaging, things that would be appropriate or seeing certain specialists. Maybe orthopedist if needed because it could be I’d say less likely leukemic relapse, but still want to be sure. But it could be definitely complications from GVHD or there’s some joint issues that can evolve post-transplant, especially for people who are on long-term immunosuppressant medications. Or it could be the normal effects of aging. So, it’s always good to have that reassurance. 

Katherine Banwell:

Let’s talk a little bit about mental health resources. Managing the worry associated with a diagnosis or concerns about relapse, or even various side effects can lead to emotional symptoms like anxiety and fear.  

Why is it important for people with AML to share how they’re feeling with their healthcare team? 

Dr. Alice Mims:

So, I think it’s very important because, one, all of those feelings are normal feelings. I think they’re sometimes that from going through such a rapid diagnosis and then having to start treatment pretty quickly and going through all the ups and downs with these types of diagnosis can really lead to for some patients PTSD-type symptoms. And then there are also things that can evolve over time where their anxiety or even survivorship guilt as you go if you move forward and are doing well where you may have some friends or people you met along the way who may not have had as good outcomes. And so, there are resources available based off of where you are.  

But for survivorship, oncology specific counseling to deal with some of these feelings that are understandable and normal for what patients have been through. 

Katherine Banwell:

Can a social worker help? And are there other people on the healthcare team who can support a patient’s emotional needs? 

Dr. Alice Mims:

Oh, absolutely. So, I think it’s really place-dependent on where you are but yes, absolutely. Social workers are a great resource for patients. There may be other collaborative teams based off of where you’re receiving your treatment that may be available that are maybe patient support groups where you can go and be with other patients or Facebook, social media support groups. And I think all those can be very helpful. And I know at least at our center, we also have patient mentors who have been through and gotten through to the other side of transplant or whatnot who are great resources because they’ve lived and experienced it. 

And I think that’s just as a physician, I can talk about things that I don’t have that personal experience having lived through it. And I think that’s very important — 

Katherine Banwell:

Yeah. It’s a… 

Dr. Alice Mims:

…to be able to have somebody to talk to. Yeah. 

Katherine Banwell:

Yeah. What about the financial aspect of treatments? There are many people who would find it difficult to find and maybe they don’t have insurance, or their insurance doesn’t cover a lot. How do you help patients who are dealing with financial restrictions?  

Dr. Alice Mims:

Sure. So, I think that we’re fortunate here because we have a lot of support staff to help patients with our financial counseling team. We also have people within the medication assistance programs who can help find foundation grants to help with medication support, travel support. 

I think for patients who may not have those things available at their individual center, The Leukemia & Lymphoma Society is a great place to reach out for.  

And there are other foundations as well who at least may have navigators to help patients figure out other resources or funding available. 

Katherine Banwell:

Yeah. Okay. That’s really good information, Dr. Mims. Thank you. And please continue to send in your questions to question@powerfulpatients.org and we’ll work to get them answered on future programs. Well, Dr. Mims as we close out our program, I wanted to get your thoughts on where we stand with progress in AML care. Are there advances in research treatment that you’re hopeful about? 

Dr. Alice Mims:

Yes. I would say from even when I finished fellowship 10 years ago, not to state my age, but we had essentially about three treatments at that time. 

Now in the past five years there have been I think maybe 11 different new drugs that have been approved for a acute myeloma leukemia. And so, I think we’re just on the precipice of really evolving to have individualized care. Hopefully have more curative options for patients. So, I’m really excited for the time we’re in right now where I even hope we’ll be in the next five years for patients. 

Katherine Banwell:

That’s an encouraging message to leave the audience with, Dr. Mims. Thank you so much for joining us today. 

Dr. Alice Mims:

Thank you so much for letting me be here with you today. 

Katherine Banwell:

And thank you to all of our collaborators. To learn more about AML and to access tools to help you become a proactive patient, visit powerfulpatients.org. I’m Katherine Banwell. Thanks for joining us today.   

Why Test Results Matter | Accessing Personalized Non-Small Cell Lung Cancer Treatment

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Why Test Results Matter | Accessing Personalized Non-Small Cell Lung Cancer Treatment from Patient Empowerment Network on Vimeo.

Can test results affect non-small cell lung cancer treatment options? Dr. Erin Schenk reviews essential lung cancer testing, discusses how the results may influence treatment approaches, and explains why it’s important for patients to take an active role in their care and treatment choices.

Dr. Erin Schenk is a medical oncologist, lung cancer researcher, and assistant professor in the division of medical oncology at the University of Colorado Anschutz Medical Center.

Download Program Resource Guide

See More From INSIST! Lung Cancer

Related Resources:

An Expert Explains Predictive Biomarker Testing for Lung Cancer

An Expert Explains Predictive Biomarker Testing for Lung Cancer

 Advances in Non-Small Cell Lung Cancer Testing

Advances in Non-Small Cell Lung Cancer Testing

 What Biomarkers Affect Lung Cancer Care and Treatment

What Biomarkers Affect Lung Cancer Care and Treatment?

Transcript:

Katherine Banwell:

Hello, and welcome. I’m Katherine Banwell, your host for today’s program. Today we’re going to discuss the latest advances in lung cancer including the role of genetic testing and how this may affect treatment options. Before we get into the discussion, please remember that this program is not a substitute for seeking medical advice. Please refer to your healthcare team about what might be best for you. Well, let’s meet our guest today. Joining me is Dr. Erin Schenk. Dr. Schenk, welcome, would you please introduce yourself? 

Dr. Erin Schenk:

And thanks so much, Katherine. I’m Dr. Erin Schenk. I’m a medical oncologist at the University of Colorado and I have a great position where I’m able to take care of patients with lung cancer in the clinic and also, do laboratory-based research on new and different therapies for lung cancer. Thanks so much for having me. 

Katherine Banwell:

That’s so great. Oh, I’m so glad you were able to join us today. Because this program is part of our Insist series which empowers patients to insist on better care. Can you tell us why you think it’s important for patients to speak up and engage in their lung cancer care decisions?  

Dr. Erin Schenk:

Absolutely, and I think as a physician it’s important not only to partner with patients but as well as their loved ones and their caregivers who help navigate this diagnosis of lung cancer. There are some diagnoses in the world, cancer being one of them and lung cancer especially that can turn everything upside down. So, it completely changes your world. Suddenly the life as you’ve been living it, the plans you had they all have to be paused or halted in some way to get care for the lung cancer diagnosis.  

One of the – and one of the really hopeful parts about being a doctor who cares for patients with lung cancer is just the speed of the advancements and the speed of the changes in the treatment options that we have for patients diagnosed with really any type of lung cancer.  

And so, I think it’s really important when you’re meeting with your team and you’re talking with your cancer doctor to really try to understand what is the information that they use to make some of these decisions or referrals on your behalf? And also, think about, is there an opportunity for me to get another opinion about what might be the best options? 

Katherine Banwell:

Thank you for that Dr. Schenk, that’s helpful as we begin our discussion today. I’d like to start with some basics. What are the various subtypes of lung cancer, and how are they identified?  

Dr. Erin Schenk:

Absolutely. So, there are a number of different subtypes of lung cancer that are important for us to identify, because it helps to stratify or helps to select the right treatment approaches for a patient. So, usually when someone is diagnosed with lung cancer there was a scan done at some point that noticed a mass or masses in the body. 

What happens next is a biopsy happens where a needle is used to sample the tissue, and that could be in the lung, that could be in lymph nodes or other parts of the body and that tissue that’s sampled is first sent to my colleagues in pathology.  

And they’re a group of doctors who look at tissues underneath the microscope and try to identify what those are. And based on that initial pathology analysis, we can identify usually pretty straightforward, what is the type of cancer that they see under the microscope.  

And so, in very general terms there are non-small cell lung cancers, there is a group called small cell lung cancers, and there’s also a group called neuroendocrine cancers as well. Oftentimes, times we’re able to differentiate these types of tumors, these types of lung cancers based on how different markers show up, and these are called stains. 

And these stains can differentiate non-small cell between adenocarcinoma versus squamous cell carcinoma. And then they can also help differentiate small cell lung cancer. And then, of course, they can also help to identify if this is a neuroendocrine tumor. 

Katherine Banwell:

Okay. Thank you so much for explaining that. Today we’re going to focus on non-small cell lung cancer. Are there specific tests that patients should ask their doctor for following a diagnosis?  

Dr. Erin Schenk:

Absolutely, and I think it’s sometimes helpful to understand what are all the pieces of information I need when I first meet a patient to make decisions about treatments? So, we just went over the histology or another word, the pathology, what does the cancer look like underneath – under the microscope? That can help and that’s one of the pieces, understanding what type of non-small cell lung cancer is present. 

Additional information that’s needed includes certain tests, and you might hear say like, molecular testing or sequencing. Those pieces of information can be really important for treatment selection. So, whether there’s a diagnosis of adenocarcinoma or squamous cell lung cancer, we always try to know the PD-L1 status. And that’s actually a surface marker that’s present on the outside of the cancer cells and is able to help us select immunotherapy treatments as appropriate.  

Oftentimes, patients with lung adenocarcinoma will get further sequencing of the tumor itself. And again, you might hear of this called molecular testing or next-generation sequencing, NGS. There are a lot of terms we use for it, but fundamentally, what we’re trying to do is understand the vulnerabilities of the cancer cells. 

And these vulnerabilities can be identified by these molecular tests. They often are able to recognize mutations or fusions or genetic changes within the cancer cells that are present. This is critically important, because we have a whole number of oral targeted therapies that can go after these mutations or alterations, and in other words, they go after the vulnerability in the cancer cells. That’s the adenocarcinoma histology.  

That’s the majority of non-small cell lung cancer diagnoses but I think also if you have been told your diagnosis is of squamous lung cancer, classically we don’t often think of those driver alterations or those fusions or mutations that I just spoke about. But I think it’s also quite important for patients in that situation to also undergo molecular testing.   

As we learn more and more, sometimes those squamous lung cancers can also bear those same alterations. Not to the same frequency, but they can be present, and I think it’s important as you’re thinking about a patient to try to understand what are all the tools I have for them to do that sequencing just to make sure you’re not missing something. So, that’s a really in-depth look to molecular testing.  

I’d like to transition to some of the other tests that would be necessary to help put that molecular testing in context. Another important piece is something called staging. And staging is a way to determine if the lung cancer has traveled elsewhere in the body.  

Sometimes it can be involved in the lymph nodes of the middle of the chest. Sometimes it can go outside the chest. For example, to the bones or the liver or the brain, and understanding that information, understanding that lay of the land before we start treatment, is really important, not only for treatment selection, like the treatments, the medicines I would give as a medical oncologist.  

But also, in thinking about which other colleagues of mine who help take care of patients with lung cancer should I also involve in some of these treatment decisions. So, staging can often involve CT scans of the chest, abdomen, pelvis. A PET scan can be done. As well as an MRI of the brain. 

Katherine Banwell:

Dr. Schenk, I just want to confirm that you’ve been speaking about molecular testing, that’s the same as biomarker testing, right?  

Dr. Erin Schenk:

Exactly. Exactly.  

Katherine Banwell:

And how is it performed? 

Dr. Erin Schenk:

So, biomarker testing, molecular testing, NGS, there’s a whole range of synonyms we use, that is done primarily on the tumor tissue.   

So, the first test that usually comes back is a marker on the cancer cell. 

That’s PD-L1. That is an IHC test that is able to be done pretty quickly and we’re able to have a turnaround time of just a few days to understand that first biomarker. But the PD-L1 status does not make sense unless we have all of the other information to get the best context, the best understanding of the tumor and what drives the tumor. That additional testing is actually the next-generation sequencing where the genetic material of cancer cells, the DNA and RNA is sequenced in a laboratory to look for those mutations or fusions or other alterations that can drive the cancer cells. And again, it helps me identify additional vulnerabilities in the cancer cells to allow me to pick the optimal therapy for the patient in front of me. 

The tissue testing is the gold standard and we try to get all of our answers from the tissue. Sometimes we’re also able to get additional information from the blood, and that’s what’s called a liquid biopsy. Cancer cells – in some patients, cancer cells shed their genetic material into the bloodstream.  

And these specialized tests are able to pick up that genetic material, have the sequencing done on that, and then report back to me about what may or may not be found.  

Now, as I mentioned, not all of lung cancers shed this information into the blood, so it’s not – if the blood does not reveal an answer or information, that’s – we still need to look closer at the tissue, but occasionally if the blood reveals certain alterations, that can be acted upon, and we don’t have to wait for the tissue testing. 

I think one of the challenges that I absolutely sympathize with their biomarker or molecular testing is that it can take a series of weeks to really get all of the information necessary to make the best choice for the patient in front of us.  

And I have a saying I like to share with patients that is really important and I think really fundamental to the treatment choices for patients with lung cancer and that is, it’s better to get started on the right treatment rather than the fast one, and that’s true. We know through a series of clinical trials that if I were to start a patient on a treatment that wasn’t appropriate to their biomarkers I actually hurt them. So, I actually reduce how well their later therapies will work. 

And so, it’s a tough wait and I anxiously wait with all of my patients but it’s a really important – it’s really important to get all of that information together. 

Katherine Banwell:

Well, would the cancer change dramatically over a period of three or four weeks? 

Dr. Erin Schenk:

That’s it, you know, that’s a question I hear a lot from patients, and, again, to empathize with the agony of waiting, it’s hard to wait but I can tell you as a doctor who’s taken care of many, many patients with lung cancer the weeks do not make a difference in terms of will have – will it hurt me? So, it will not in general it does not hurt to wait. It’s better to get started on the right treatment because the right treatment has the highest chance of being effective. 

So, the two to three weeks very rarely in my experience has that changed a situation for a patient, but that’s also why we frequently do the liquid biopsy testing at the same time as the tissue testing, because we too want to try to get the answer as quick as possible. So, we try to exhaust all of the routes that we have to get the answer that we need for our patients. 

Katherine Banwell:

What about the latest advances, is there anything in lung cancer testing that patients should know about? 

Dr. Erin Schenk:

Yes, absolutely. I think more and more we’re using these liquid biopsies in different situations for patients with lung cancer. So, Katherine, you and I have mostly been talking about patients who’ve been diagnosed with metastatic disease or a disease that’s been spread outside of the lungs. The liquid biopsy testing, though we’re starting to use in patients who have tumors we can remove with surgery or tumors we can try to cure with a combination of chemotherapy and radiation therapy. 

And we’re using more as a marker of response, and what I mean by that is let’s say someone with a cancer that can be surgically resected or removed by surgery, we can check their liquid biopsy. And if we see a marker in their liquid biopsy, we can then follow that over time in conjunction with scans to try to understand is the cancer – you know, with all the information we can, is the cancer completely gone or are we starting to see that marker again? Do we need to think about doing different scans or different tests to look for a potential area of recurrence of the cancer? 

Katherine Banwell:

What sort of questions should patients be asking about their test results? 

Dr. Erin Schenk:

I think the primary question is “Have you sent my tissue for biomarker testing?” 

And this is true – in my opinion, this is true regardless of the stage of diagnosis, again in the non-small cell lung cancer space, and that’s because we are starting to use some of our targeted therapies as well as our immunotherapies in patients with cancer that can be resected by surgery or maybe would get chemotherapy and radiation therapy. So, these biomarkers are also important in that decision-making for patients that have an earlier stage of disease. And so, I think the first question is, “Has my tissue been sent for biomarker testing?” because I think that’s a part as a necessary part of care given the advances that we’ve made.  

That’s the first question, two, “When do you expect the results? When did it get sent off?” and then three, you know once that has been sent off and whether that’s tissue testing, liquid biopsy, or both, talking with your doctor and your team about what it means.  

How they incorporate this data into your treatment decisions, and then occasionally, asking about did they get all the information they need? Because while we’ve been able to do this biomarker testing for lung cancer for years now, you know, no test is perfect and sometimes cancer cells aren’t the best material to start with when you’re trying to get a really definitive answer.  

So, occasionally patients might need to be biopsied again to really and truly get the full spectrum of information necessary prior to making treatment decisions.  

Katherine Banwell:

Yeah, great suggestions. Great ideas, thank you. We’re hearing the term personalized medicine a lot these days. Would you define the term for our audience? 

Dr. Erin Schenk:

Absolutely, and I think the treatment of non-small cell lung cancer is one of the poster childs for children – for personalized medicine because based on the result of the biomarker testing that’s what drives my choice of therapy because the biomarkers help to tell me what is this cancer most likely to be vulnerable to and that in my mind that’s a wonderful application of the promise of personalized medicine.   

Katherine Banwell:

Okay. Let’s move on to treatment now, Dr. Schenk. Would you walk us through the current treatments being used to treat non-small cell lung cancer? 

Dr. Erin Schenk:

Absolutely, and there are a broad range of options, and thankfully we have so many choices in how to best help patients. And it’s often why visiting with a center that sees a lot of patients with lung cancer can be beneficial so that you have all of the parties at the table that need to be there as we’re making these treatment decisions. So, I would start thinking about patients with early-stage disease. Often surgery if tumors are small enough and there’s not you know, no lymph nodes are involved with the cancer and it’s not anywhere else.  

Sometimes surgery is all that patients might need in terms of their treatment. Those are for patients with smaller tumors and really early-stage disease. As we move forward in the stages, meaning going from stage one to stage two, so a little bit bigger of a tumor, lymph nodes might be involved.  

That’s when really the multi-disciplinary approach happens, and what I mean by that is for example, at my institution where people like me, medical oncologists, radiation oncologists, and surgeons all sit down together to talk about a patient, their scans, you know, what is their health status, what is their biomarker testing, to try to come together to form a treatment approach. And so, at our institution, you know, frequently in stage two to stage three tumors based on biomarker testing we either select upfront surgery followed by chemotherapy followed by sometimes targeted therapies or TKIs.  

Those are the medicines, the TKI, those are the medicines that are really dependent on the presence of biomarker testing. So, the biomarkers often tell us for example if there’s an EGFR mutation. If that’s present then I would use an EGFR TKI, for example. 

But if those biomarkers don’t show a alteration where I have TKI to use, then we frequently are giving patients chemotherapy plus immunotherapy before surgery. This approach is called a neoadjuvant chemoimmunotherapy approach, and it’s one of the newer changes to lung cancer care within the past year that I think really is going to have a positive impact on outcomes for patients with lung cancer.   

So, just again in broad strokes, and then as we move into stage three patients where we can’t resect the tumor, that’s where we give chemotherapy medicines plus radiation therapy. Oftentimes followed by immunotherapy and then when patients have disease that spread outside of the chest, outside of the lungs, the metastatic setting or stage IV, that’s when we think about the whole host of therapies available through medical oncology, systemic therapies is another way to call them.  

And there we think about immunotherapy-based treatments plus or minus chemotherapy or we think about targeted therapy-based approaches with those TKIs. And again, it’s all based on those molecular markers, those biomarkers. 

Katherine Banwell:

Do clinical trials play a role in lung cancer treatment? 

Dr. Erin Schenk:

Clinical trials are incredibly important for the treatment of lung cancer. These are the tests and the procedures that we do that have continuously advanced our ability to care for patients with lung cancer. You know, it was clinical trial data that helped us get alerted to doing chemotherapy and immunotherapy before surgery really can help patients do better. And similarly, clinical trials have helped us define when do we use TKIs or targeted therapies. 

So, I think that’s another great question to ask your team of, “Based on all of the information you know about me and my cancer are there clinical trials options that are available here where I’m at or ones that are really interesting or appealing elsewhere that might be worthwhile for me to consider?” So, clinical trials are a critical part of how we help patients do better.  

Katherine Banwell:

Personalizing therapy involves taking into account a number of patient factors. What should be considered when deciding on a treatment regimen for a given patient?   

Dr. Erin Schenk:

Yes. That’s a great question and one that is really important in formulating a treatment plan. So, some patients because of their health status, for example, aren’t able to undergo surgery, and that happens. And so, occasionally sort of their health status maybe their lungs don’t work as well as they used to or the heart doesn’t pump as well as it used to. 

You know, those sorts of health concerns can help us tailor and personalize treatments to what would be the most – the safest but also the most effective approach. Occasionally patients have another long-term chronic disease where using immunotherapy might be more dangerous than helpful because they’re sometimes autoimmune diseases.  

Especially ones that affect the brain, so for example multiple sclerosis can be one of those or disease that affect the lungs, you know, interstitial lung diseases. Those would put a patient at great risk of receiving immunotherapy, but outside of the health status, it’s also important I think to talk about what your preferences are as a patient as well.  

Because sometimes we will come to you and say, “Here are these multiple different choices and what’s important to you or maybe what you’re worried about or what you’re concerned about are considerations that we want to hear about and understand so that we can talk you through the process and help make some of these decisions.” You know, for example, if you’re receiving chemotherapy plus radiation together for your cancer care that can be a huge time commitment.  

What I mean by that is when patients get radiation in certain circumstances, that can be once a day every day, Monday through Friday for six weeks at a time and sometimes patients have challenges with transportation. Or sometimes they have you know, challenges balancing a job or childcare or other things like that. So, these are all part of the – just part of bringing it all together and putting together a treatment plan that makes sense for what we understand about the lung cancer itself, but also what we understand about you as our patient. 

You know, how can we make changes or make suggestions that would best fit for you and your needs? 

Katherine Banwell:

You’ve brought up some really good points and of course, patients should be involved in these decisions. If a patient is feeling uncomfortable with their care plan, why do you think it’s important for them to speak up? 

Dr. Erin Schenk:

In my experience, when people are worried about certain things or they say they definitely don’t want this therapy it’s because they have seen other loved ones or family members suffer because of that particular type of treatment in the past. And I think bringing up those concerns can be helpful for me as someone’s doctor to talk them through, okay, this is what chemotherapy looks like. This is what we do to help reduce your side effects.  

These are the resources we have to support you through treatment if any of these side effects come about and I think I also impress upon them that receiving treatment is ultimately their decision now. My bias of course, I think we can help patients quite a bit with their treatments, but I think it’s also important to recognize you know, they have autonomy to say no at any point in time. And I think just acknowledging those fears, acknowledging those concerns, putting together a plan you know, before any of those potential worrisome side effects happen can be really powerful to help reduce some of the stress and worry around treatment. 

Katherine Banwell:

Dr. Schenk, when should patients consider a second opinion or even consulting a specialist? 

Dr. Erin Schenk:

I think any time it’s appropriate. We – at our institution, we’re one of the main lung cancer centers that – you know, within several hundred miles, so we frequently see patients and sometimes it’s just to check in and say you know, the patient says, “Here’s what my team has started me on. You know, what do you think should be the next approach?” and we talk about that, but really anytime I think is appropriate for reaching out for another set of eyes to look at things. I would say perhaps some of those most critical times would be prior to treatment starts especially if – yeah, I would say prior to starting a treatment with that new diagnosis.  

That would be a really critical time because often again, sometimes once we start down a treatment path, we’re in some ways we’re committed, but if that maybe isn’t the optimal treatment path based on, you know, the tumor and the biomarkers and the patient preference starting on that less optimal treatment path could potentially hurt patients in the long run. So, I would say at – you know, potentially at diagnosis when a treatment course is recommended and then if there is a need to change treatments.  

So, for example, especially in the metastatic setting there are certain therapies widely available. People are very familiar with them, can start them no problem, but when those treatments stop being beneficial that might be a time to also meet with a specialist or go to a lung cancer center of excellence to get their opinions on what to do next.  

Katherine Banwell:

You know, one thing patients are often concerned about is the financial aspect, the financial burden that is involved in their treatment care. How do they deal with that? Are there resources available for them? 

Dr. Erin Schenk:

There can be and this definitely can vary based on what treatment you’re being given and where you are, at what institution and what state you’re being treated at since resources are different. But for example, the targeted therapies or the TKIs I made reference to earlier, those can have some significant out-of-pocket costs and most of the,  if not all of the manufacturers of those various TKIs have patient assistance programs that help to reduce the out-of-pocket costs for those specific medicines.  

When I prescribe a TKI for a patient often what’s part of that is a prior authorization to try to understand what’s the out-of-pocket cost for the patient and then kind of get on top of whether or not we need to apply for patient assistance to help pay for the cost of that medication. So, that’s one way that we can help. 

I think, in again, this is specific to my institution and our clinical practice, but we often have – we work very closely with other cancer doctors in the community. So, if traveling to our site is a major burden we can usually have them visit with a oncologist who’s close to them so there’s less travel, there’s less costs in you know gas and staying somewhere. But they still can be connected with us. So, while they can get most of their care under a doctor that’s closer to them, every so often they come back and see me and just talk about how things are going and what you know might be worthwhile to consider down the road.  

And I would also recommend that if there are other costs or concerns you know, kind of above and beyond these things that we’ve touched on, connecting with a social worker through the cancer center can be helpful in dealing with paperwork for disability or retirement or sometimes connecting to resources if there’s a childcare need. 

Or you’re caring for a spouse and you need additional help at home. You know all of the different burdens that are present in life that just get magnified with a cancer diagnosis and you know, we can – there’s usually a really big attempt to try to find a way to help figure out navigating those so that you can get the care you need.  

Katherine Banwell:

Yeah. Before we close, Dr. Schenk, I’d like to get your final thoughts. What would you like to leave the audience with? Are you hopeful? 

Dr. Erin Schenk:

Yes. There are tremendous – there has been tremendous growth and change in the practice in how we treat patients with lung cancer, even just in the past handful of years and it’s made marked improvements in how well people do and for how long they do well. 

And that – you know that trajectory I anticipate continuing based on the clinical trials I’ve been involved with as well as the data I hear about from other clinical trials thinking about new and different medicines that we could use in the diagnosis of lung cancer. As well as applying some of the medicines we already have in different ways and different situations you know, to help better control the cancer or help even increase the cure rate in certain situations.  

So, I think there are a number of reasons to be hopeful and if you visit with your team of doctors and that you don’t get that sense of hope or you don’t hear about all the different ways that they can help you, you know that might be a time to really think about, “Perhaps I need to get a second opinion and hear about some of these developments or some these other ways that potentially I could be treated with my new diagnosis of lung cancer.”   

So, I think there are a lot of reasons to be hopeful. Lung cancer, of course, is still a serious life-changing diagnosis, but there are ways we can help regardless of what the stage is or where you’re at in life. I think there are opportunities for us to still help you. 

Katherine Banwell:

It sounds promising, Dr. Schenk. Thank you so much for taking the time to join us today. 

Dr. Erin Schenk:

Absolutely. Thank you for the invitation.  

Katherine Banwell:

And thank you to all of our partners. To learn more about lung 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.   

What Is the Purpose of AML Genetic Testing?

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What Is the Purpose of AML Genetic Testing? from Patient Empowerment Network on Vimeo.

How is genetic testing for AML administered, and what is the purpose? Dr. Sanam Loghavi explains the methods of genetic testing and the function of each method.

Dr. Sanam Loghavi is a hematopathologist and molecular pathologist at The University of Texas MD Anderson Cancer Center. Learn more about Dr. Loghavi.

See More From INSIST! AML

Related Resources:

AML Targeted Therapy: How Molecular Test Results Impact Treatment Options

 The Importance of Molecular Testing Following an AML Relapse

 Emerging AML Treatments: What Is Menin Inhibitor Therapy

Transcript:

Katherine Banwell:

Dr. Loghavi, let’s start by defining molecular or genetic testing for AML. How is the test administered, and what is the purpose? 

Dr. Sanam Loghavi:

Sure. So, genetic testing at diagnosis of acute myeloid leukemia is now considered standard of care, and it must be performed for every patient with acute myeloid leukemia.  

We have different methodologies of doing genetic testing, and we can use – so the best sample to perform genetic testing on is really bone marrow. But if there are circulating leukemic cells, then we can also use peripheral blood instead of bone marrow. 

And the genetic tests really three main methodologies are used. One is called routine karyotyping, where we look at and characterize the chromosomes of the cancer cells for the leukemic cells. The other one is fluorescence in situ hybridization, which is another method for visualization of chromosomes, and we can look for deletions, addition of chromosomal material or certain translocations or rearrangements.  

And then next-generation sequencing allows us to look for smaller changes at the DNA level. So, these are single nucleotide variations at the DNA level or smaller insertions or deletions of genetic material.  

How Is Telemedicine Influencing Personalized Medicine for MPN Patients?

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How Is Telemedicine Influencing Personalized Medicine for MPN Patients? from Patient Empowerment Network on Vimeo.

How can myeloproliferative neoplasm (MPN) personalized medicine be influenced by telemedicine? Expert Dr. Krisstina Gowin from University of Arizona Cancer Center explains how telemedicine helps create a more personalized and precision-based approach for optimal MPN patient wellness.

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Transcript:

Lisa Hatfield: 

Dr. Gowin, can you provide or share some examples of how telemedicine is influencing personalized medicine and MPN care, and how can MPN patients best advocate for themselves to get the latest in MPN care?

Dr. Krisstina Gowin: 

Well, I think it’s going back to some of the conversations we’ve already had, is that now with telemedicine, you can really access academic centers no matter where you are. And so rural areas now can go to academic centers, very accessible without travel, and so what that lends to is more access to precision-based clinical trials, and very often now we’re doing next-generation sequencing panels for patients with MPN. We’re looking at what are the genetic features of the disease and we may be accruing trials based on those genetic features. And so that kind of conversation really only happens at academic centers, and so I think it’s really allowing those that live far away, a few hours away, to really have those personalized and precision-based conversations. And then tying in again the aspect of integrative medicine. And then what is integrative medicine all about is personalizing your treatment plan, asking what are your goals, what is your lifestyle, what is your culture, and how do we really get you on a plan that makes sense for you, that is local for you and sustainable for you to really achieve your optimum wellness?

And so if I were counseling patients listening to this, I would say, start with the in-state academic centers and say, “What are the telemedicine services there? Is there an integrative medicine department there”? And then get a quarterback within that department and say, “Okay, this is the plan,” and then that quarterback can say, “Well, now let’s look local. What do you have? What are your resources there? Let me do some homework with you and hook you up with really evidence-based high quality providers to achieve your personalized needs in your local community.” And I think that’s how we’re really going to get all of our patients in a precision and personalized approach no matter where they live, and that’s again, the beauty of telemedicine and digital health. 

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Patient-Provider Relationship Role in Lung Cancer Biomarker Testing

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Patient-Provider Relationship Role in Lung Cancer Biomarker Testing from Patient Empowerment Network on Vimeo.

How is lung cancer biomarker testing impacted by the patient-provider role? Experts Dr. Heather Wakelee and Dr. Leigh Boehmer discuss how specific additions to multidisciplinary teams and support resources aid in building communication for biomarker testing and optimal treatment.

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How Are Barriers in Lung Cancer Biomarker Testing Being Addressed?

Transcript:

Dr. Nicole Rochester:

As we begin to think about how the patient-provider relationship and the patient-provider communication plays a role in addressing some of these barriers that we’ve been talking about and then making sure that patients are appropriately being tested and treated, I’d love to hear from you all regarding the role of the patient-provider partnership as it relates to biomarker testing. So, let’s see, I’ll start with you, Dr. Boehmer.

Dr. Leigh Boehmer:  

So I really, really think this question is critical, and I’m going to bias by saying, an exciting new position on the multidisciplinary cancer care team that we are learning about it, some of our member programs, is that of a precision medicine steward or navigator. So if you’re at all familiar with the idea of a patient navigation service or the services provided by financial advocates or financial navigators, this is really identifying that it is getting so complex in the world of targeted testing, targeted treatments today, that it literally requires in some places and settings an FTE or multiple to try to navigate testing, pathology, external labs, medical oncology, pharmacy services, nursing administration, and then, of course, patients and caregivers, and communication and context building, working with patient advocacy groups who are out there publishing great resources on testing and what they mean and targeted treatments. But trying to put all of that together, I will admit as a community clinician, as you probably see 15, 18, 20 patients a day, sometimes with as many different discrete types of cancers, it gets overwhelming.

And so, having a support person on staff who can help you manage some of that information and the patient-provider conversations, ACCC is very, very much about recognizing multidisciplinary teams of providers, so it’s critical to have navigation, to have social work providing distress screening and psychosocial support, to have pharmacists talking about targeted therapies and how they match with, to Dr. Wakelee’s points, mutations and fusions and rearrangements and everything we’re testing for with our big panels of next-generation sequencing, right? So I really want to encourage us all to utilize as patients and as team members, everybody else on the team, which is also to say patients and caregivers, are team members too, right? They have rights and responsibilities as members of their own team. And I will end with this, I say all of this, and I feel justified in saying all of this because we’ve done research at ACCC, and without that critical infrastructure, there’s potentially a real disconnect. So, for example, we asked patients with lung cancer what resources would be most impactful for you as you embark on your treatment journey, and they said things to us like psychosocial support and financial assistance.

When we asked the provider respondents a similar question in their own survey, the number one thing they identified, they thought patients needed were educational handouts or websites to go seek information about their diagnosis. Now that’s not to shake a finger at anybody or to say that you were right or you were wrong, that’s just to say, we need people who can approach this whole patient-provider construct from different perspectives, because Leigh is going to ask different questions than Heather is going to ask, than Nicole is going to ask, and that’s the beauty of multidisciplinary care coordination. We do need to come at it from different angles, different perspectives, and always make sure we’re remaining open and inclusive and asking what patients need and want right now. Because we don’t always have the answers, we have to remember that. We’re human, we have biases, it’s always better to ask and provide and then ask again.

Dr. Nicole Rochester: 

You are really speaking my language, Dr. Boehmer.

[laughter]

Dr. Nicole Rochester:  

And I see, Dr. Wakelee, both of us are shaking our heads the entire time that you’ve been speaking and just around this idea of multidisciplinary teams that include the patient and the family, and ideally at the center. Dr. Wakelee, do you have anything to add?

Dr. Heather Wakelee:

Hard to add. That was very impressive, Dr. Boehmer, [laughter] and highlighting that just…we talk about multidisciplinary sometimes, the first version, some people think of it’s just it’s a team of a few different types of doctors. And obviously that’s not at all what we’re talking about, this is to provide the best possible care for a patient dealing with cancer, that physician-to-patient interaction is critical, but the patient to physicians to family is critical. And then you’ve got to also think about all the psycho-social needs and whether that’s going to be with a social worker or… We have a lot of people working in oncology who are psychologists and psychiatrists particularly focused in that because the coping with the disease is such a big part of it. And it’s also the pharmacy teams and the nursing teams. It is…multidisciplinary is many, many different levels of circles, but at the core, it’s the patient and family and the primary physician, that’s kind of the way I think at it, but I’m an oncologist, so perhaps I’m a little biased in my viewpoint there.

But it’s that communication right there where you sort of have all of the information that the physician’s holding, that’s coming from all of the different treatment disciplines, and then you’ve got all the information that the patient’s holding, that’s coming from their understanding of them and all of their other aspects of their life, and that’s sort of that interaction at the core, and making sure that both sides are seeing each other and seeing all of the other layers of that, so that you could make sure that at each point the recommendations and what the patient is actually doing, everyone’s coming from a point of understanding. I think, to me, that’s the most critical piece. And you don’t have that understanding if you don’t also have all the information you need about the tumor, and you’re not making that right decision if you don’t have all the information you need about all the aspects of who that patient is as a person, and that goes into their decisions as well, and that’s to me, that’s what we’re aiming for, right?

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HCP Roundtable: Improving Clinician-Patient Conversations in Lung Cancer Biomarker Testing

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HCP Roundtable: Improving Clinician-Patient Conversations in Lung Cancer Biomarker Testing from Patient Empowerment Network on Vimeo.

Comprehensive biomarker testing can play a very important role in the personalized treatment for patients with non-small cell lung cancer (NSCLC). How do we improve clinician-patient conversations in biomarker testing? And how do we remove barriers that can impede an HCP’s ability to treat patients with personalized care?

Dr. Heather Wakelee, Professor of Medicine and Chief of the Division of Oncology at Stanford University School of Medicine and Dr. Leigh Boehmer, medical director at Association of Community Cancer Centers (ACCC) weigh in on this very important topic. 

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Transcript:

Dr. Nicole Rochester:

Welcome to this Empowering Providers to Empower Patients (EPEP) program. I’m Dr. Nicole Rochester, pediatrician and CEO of Your GPS Doc. In this Patient Empowerment Network program, we connect leading lung cancer expert voices to discuss enhancing physician-patient communication and shared decision-making in lung cancer care. Some of the topics we’re going to tackle in today’s conversation include the challenges and solutions for biomarker testing in the community hospital setting and in academic centers.

We’re also going to talk about removing barriers that can impede a healthcare provider’s ability to treat patients with personalized care, improving clinician-patient communication with regard to NSCLC biomarker testing, and we’re also going to explore opportunities to improve access to personalized care for all patients. I am thrilled to be joined by thoracic medical oncologist, Dr. Heather Wakelee, Professor of Medicine and Chief of the Division of Oncology at Stanford University School of Medicine. Dr. Wakelee is also President of the International Association for the Study of Lung Cancer. I am also thrilled to be joined by Dr. Leigh Boehmer, Chief Medical Officer at the Association of Community Cancer Centers. Thank you both for joining us today.

Dr. Leigh Boehmer:  

Thank you.

Dr. Heather Wakelee:

Thank you.

Dr. Nicole Rochester:

So we know that biomarker testing connects the right patient to the right treatment at the right time and potentially to the right clinical trial, but there also are some challenges and interventions are necessary, and that’s going to really frame our conversation today. So I’d like to start with the general landscape, so I’m going to start with you, Dr. Wakelee, what in your opinion and expertise are the existing challenges as it relates to biomarker testing in academic medical centers?

Dr. Heather Wakelee: 

Thanks for that question, Dr. Rochester. I think that the biggest challenge is making sure that every patient with a new diagnosis of advanced stage non-small cell lung cancer gets the testing done and gets the testing results back before they start treatment, right? And that’s the goal. I guess that’s more of the goal than the problem, and the challenges come in each of those different phases. First is making sure that every patient is given access to the testing, and there are barriers if the patient ends up very, very sick in a hospital setting.

There are some regulations that can make that challenging, they might be…their first encounters with the healthcare system are going to potentially be with pulmonologists, general practitioners, interventional radiology. And those people might not be aware of what needs to happen to get the tissue as quickly as possible into testing, they might not be as aware of drawing a blood test, if we’re going to do a liquid biopsy, and so if those things aren’t initiated first, when the patient gets to see the oncologist some days or even a week or two later, we’re already further down the path.

They might be starting to get symptoms, and then when you start the testing, you might have to wait longer than is really acceptable before you have the results that could inform treatment. And as you said, Dr. Rochester, the testing, when we get those molecular results back, that’s going to help us figure out what’s going on in that tumor that might change our treatment options, because there’s a driver mutation where there’s a new drug approved that’s going to be the best efficacious opportunity for that patient. And if they don’t know, they can’t start it, we also run into issues where if the patient’s symptomatic, we can’t wait, and then they get started on chemotherapy and immunotherapy, which might otherwise be a standard approach, immunotherapy is in the body, chemotherapy is in the body, the toxicity is there, and then if you later find out, oh, there was a driver mutation, your hands are a little tied, because the toxicity can be amplified if you combine agents and the immune therapy is in the system for months.

So these are some of the challenges and really the barriers…the biggest barriers from my perspective are not every patient is being tested with comprehensive testing as early as possible, right?

Dr. Nicole Rochester:

Thank you for that, Dr. Wakelee, you’ve really, really outlined how the challenges around access to testing and even the timeliness and the importance of timely testing and the fact that these patients are often kind of making their way through a series of providers before they get to the oncologist. So I appreciate that. Dr. Boehmer, I know you have a lot of experience in the community setting where we know there are a host of additional barriers, so I’d love for you to weigh in on this question, and what challenges are you seeing with biomarker testing in the community setting?

Dr. Leigh Boehmer:

Thanks very much for the question. Yeah, I think the use of precision medicine was initially touted as this opportunity to address care disparities, whether that’s in racial ethnic minorities, differences between academic and community practices, et cetera, by using the technology to try to determine treatment largely based on things like the genetic makeup of a tumor. And, unfortunately, in reality disparities have sadly only continued to grow in the setting of targeted and/or testing related to things like ability to pay and insurance coverage for testing, mistrust in the healthcare system, and historical injustices related to cancer care delivery. And there’s a significant discordance in literature between patients and clinicians understanding of the importance of biomarker testing relative to treatment planning.

So even now in 2023, as more states are passing legislation to expand coverage of comprehensive testing, we’re hearing from member programs of ACCC running up against increasing prior authorization restrictions and requirements, and there are unfortunate ramifications of that, like additional costs to programs or additional costs to patients, for example, in the setting of reflexive testing, there’s also a lot of ongoing data which suggests concerning continued racial disparities in rates of guideline concordant testing. So there’s a lot of opportunities for us to learn, yes, from what we have done in successful models of rollout of testing, but we’re still confronting some pretty major challenges and barriers, and I’ve got to say that’s true whether you’re talking about community programs and practices or academic partners as well.

Dr. Nicole Rochester:

I really appreciate you adding that layer, Dr. Boehmer. As someone who does a lot of work in health equity, I was just sharing prior to us recording that these disparities are pervasive, and now we’re learning it’s in lung cancer, and for all of the reasons that you stated, and it’s interesting that when we really start to look at our progress, and when we look at it by comparing different racial and ethnic groups, we find, as you stated, that sometimes the disparities actually widen.

And so it’s not that these aren’t great practices and precision medicine is a wonderful thing, but to your point, if we’re not ensuring that everyone has access to this new technology, then in fact, not only do we continue to see disparities, but sometimes that we inadvertently worsen them. So I appreciate you sharing that. Both of you have been on the ground floor of research in this area with regard to biomarker testing and availability and disparities. So I’d love for you to talk a little bit about the data and what does the data tell us with regard to biomarker testing? It’s important, some of the challenges that you both just stated, and so I’ll start with you this time, Dr. Boehmer.

Dr. Leigh Boehmer:

[chuckle] Thanks, I appreciate it. I’ve been privileged to work with both providers and patients’ caregivers, taking a closer look at some of the barriers and then practical solutions that might be utilized to address some of these concerns around testing. So back in 2021, ACCC used the mixed methods approach to try to understand the motivators of patients and providers, their practice patterns, their attitudes, the educational needs of patients and providers related to biomarker testing and beyond. And you know what’s really interesting, in almost 100 total provider respondents, less than half of community clinicians who responded said that they used biomarker testing to guide patient discussions.

And that was compared to nearly three-quarters of all responding academic clinicians, and it really made us start to think about…so, you know, the impetus for testing in the context of testing. In this particular research, to my earlier comments, we were actually targeting patients with non-small cell lung cancer who were uninsured, underinsured and/or covered by Medicaid. So dual eligible beneficiaries, and it was really interesting because we looked at why and how conversations were happening about biomarker testing between providers and patients, and really identified some tremendous opportunities for education around clinicians’ needs to become more familiar with guideline concordant testing and to have more practical applications of guideline concordant testing, so things like case-based examples, so then ultimately they could have optimal conversations with patients and help coordinate multidisciplinary care.

There’s also data which would suggest a disconnect between ordering testing after initial staging versus ordering testing at the time of initial biopsy. And, Dr. Wakelee, you said something that really resonated with me because if we can identify patients who need to be tested, if we can have access to testing, we still have a disconnect, and this is largely seen in community programs today where clinicians may be waiting 10 days, 14 days, even longer to receive results of testing. And you’re right, we have patients who need treatment initiated sooner than later, and you miss these opportunities because of delays, prior authorizations and a lot of other things, So the data certainly quantitatively, qualitatively is speaking to this hierarchy of problems and there’s definitely some mismatches between patient and provider perceptions of why testing happens, what it’s used for, and timing of the testing and results sharing.

Dr. Nicole Rochester: 

That is fascinating, and we’re definitely going to get deeper into that, this whole patient-provider interaction, so I really appreciate you introducing that and thank you for all the research that your organization has done in this area. So, Dr. Wakelee, you’re on the academic side of things, and you also have been deeply involved in research in this area, so what would you like to offer from your perspective in terms of the data around biomarker testing?

Dr. Heather Wakelee:

Well, thanks, and, Dr. Boehmer, you have a very comprehensive answer there, I think that the differences between academic and community sometimes are broad and sometimes aren’t that big at all, and I do think we face a lot of the same challenges. It’s just…it’s making sure that when a physician is meeting with a patient, and let’s say it’s with the oncologist, that the oncologist is really mindful that any patient with non-small cell lung cancer could have a tumor with a driver mutation. I think it’s easy to stereotype and think that only certain patients are going to, and therefore we shouldn’t be testing everybody. And that gets dangerous. I think it also is a matter of where you’re in practice, and if you’re in a practice where the prevalence of the driver mutations and the tumors is low, you might just say, “Oh, I’m never going to see it,” and you stop testing, and that’s also very dangerous because we have seen in multiple trials, as we get back to that research question, that if we can identify a driver mutation…

And we know that more than half of patients who’ve developed lung cancer who have never smoked or have a light smoking history are going to have an actionable driving mutation, and even in people who do have a smoking history, of any ethnic background, they’re still 10 to 20 percent or maybe more as we identify more of these driver mutations, where that’s what’s really the force in the tumor. And if you find it and you can start someone on the appropriate targeted therapy, usually across multiple trials, the toxicity is less than you would get with chemotherapy or immunotherapy.

Usually the probability of response is over half, you know, if someone’s going to have a benefit that that’s going to help them feel better for a period of time in controlling their cancer, it really drastically changes their whole tumor outcome, they’re going to be living longer, feeling better, and ultimately that’s our goal when we’re helping someone with metastatic disease. And if you don’t know that the tumor has a driver mutation, you’re never going to give them that appropriate treatment, and I think that is the real challenge that we face, and there are multiple different angles to that, right? You have to have the physician aware of the importance of finding the mutation, altering the treatment as necessary, and giving that patient the best possible option for care.

But it also is making sure that the patients are open about this, because I think there’s still a lot of misperceptions about when we talk about driver mutations and the word mutation, making sure that people understand we’re talking about the cancer and not about the person. And in a short conversation that can sometimes be missed, and then people are afraid of getting tested, afraid of what that might mean for them or their family, and so the communication around, we’re going to test your tumor because your tumor might have a mutation that’s going to allow us to give different care. I think that’s really important that people always remember to talk about the tumor and not about the mutation in the person, that’s really, really critical.

And also to avoid that stereotyping about who do we test and who do we not test, pretty much anyone with a non-squamous, non-small cell lung cancer, their tumor needs to be tested, and many people who have a squamous cytology that’s also reasonable. So that’s the people aspect of it, the insurance barriers and the interpretation of the results, those are still there as well. And even if you have perfect communication and the patient understands and you get the testing done immediately, you still have to deal with, is it going to get covered or not? And the results come back, is it going to be interpretable or not? Because that can sometimes be tricky also. 

Dr. Nicole Rochester:

Wow. I would say you two have really uncovered a lot of barriers, and it’s enough to make someone feel a little bit discouraged, I would say, however, because of the work that both of you are doing and so many others, we know that there indeed is hope. And so I’d love to shift a little bit. We’ve talked a lot about the barriers, which are many, what’s on the horizon or what positive trends have you all seen, and specifically what are the opportunities, what are some things that are either happening or that are being explored with regard to removing some of these barriers or all of the barriers that each of you have talked about? I’ll start with you, Dr. Wakelee, give us some hope.

Dr. Heather Wakelee:

All right. Great. Well, I think there is reason to have hope. Absolutely. There always is reason to have hope. And so many organizations, including ISLC, including ACCC, including NCC…I mean, you could name any organization that’s involved in cancer care and education, is really focusing on this issue of making sure that every oncologist knows the importance of doing biomarker testing for patients with non-small cell lung cancer, that we are trying to expand that not just to the oncologist, but also to the folks making the diagnosis, so they can be aware as well. Patient advocacy groups are very engaged in this as well, making sure that when someone is newly diagnosed, if they reach out to an advocacy group, one of the messages they hear is, have you asked about testing what’s happening with the tumor testing?

The more people who are aware that’s a standard of care in treating lung cancer, the more that’s going to happen, and then continuing to explore those financial barriers, and as more agents are FDA-approved, where that becomes a preferred first sign option, but you only know that if the testing’s happened, that leads to campaigning to make sure that the testing is being covered as well, you know, when you can argue, this patient isn’t getting the FDA-approved best care for their cancer because that testing wasn’t done, that’s a really powerful statement. And I think that’s what we’re seeing change happening.

Dr. Nicole Rochester:

That is incredible, thank you. Thank you so much. I can smile again.

[laughter]

Dr. Nicole Rochester:

What about you, Dr. Boehmer? I know you’re getting…your organization is doing a lot of work in this area, so tell us about some of the advances, some of the improvements and tackling some of these barriers that both of you have elucidated today.

Dr. Leigh Boehmer:

So, Dr. Wakelee, thank you for all of those hope-inducing concepts and methodologies, because I honestly believe that so many of us learn best today by seeing someone like me doing X, Y, Z, so I know I can do it as well. So I think it’s about documentation of justification of testing for prior authorization claims. I think it’s about working together with the multidisciplinary team, pharmacist, advanced practitioners, oncology-certified nurses to help manage that back and forth with testing and external pathology and laboratory companies, to make sure that results show up in the right spot in the electronic health record so that they can be interpreted, shared with patients, communicated and contextualized in real time. I think it’s about greater incorporation as we’ve seen across so many of our programs of the tenets of shared clinical decision-making, and how to have a meaningful conversation with a patient and/or their caregivers about testing and its role on treatment and drug selection, and outcomes, and progression-free survival. And there are a lot of programs out there that are doing bits of this or different points along that continuum.

ACCC, for example, building on the research I shared before, recognizes that a lot of community programs don’t have kind of operational best practices for how to incorporate biomarker testing into a patient’s journey, and so for lung, and also, for example, for breast cancer, we’re working on creating care pathways which will help multidisciplinary clinician teams integrate discussions of biomarker testing and its impact at various critical time points along a patient’s diagnosis to treatment, to survivorship or end-of-life care. And those are just examples of us not being overly duplicative, but putting all the resources in one place, talking about timing, talking about when and how to have meaningful conversations, and then doing it with health-literate, vetted resources and through a lens of equity and shared decision-making, because you look like me, you had success with it. I’m going to do it for my at-risk patients as well, because one, it’s the right thing to do. And two, you taught me how to do it, and three, you told me what success looks like so I can measure myself against you, and that’s a successful model for scalability. 

Dr. Nicole Rochester:

That is wonderful. You both have nicely taken us into the next part of the conversation, and, Dr. Boehmer, you just talked about shared decision-making, and as someone who works very closely with patient advocates and health advocates, it’s so important that any effort to improve care with regard to any disease or illness, it has to involve the patient and their family, so I really appreciate you all sharing that. So, with that in mind, and as we begin to think about how the patient-provider relationship and the patient-provider communication plays a role in addressing some of these barriers that we’ve been talking about and then making sure that patients are appropriately being tested and treated, I’d love to hear from you all regarding the role of the patient-provider partnership as it relates to biomarker testing. So, let’s see, I’ll start with you, Dr. Boehmer.

Dr. Leigh Boehmer:

So I really, really think this question is critical, and I’m going to bias by saying, an exciting new position on the multidisciplinary cancer care team that we are learning about it, some of our member programs, is that of a precision medicine steward or navigator. So if you’re at all familiar with the idea of a patient navigation service or the services provided by financial advocates or financial navigators, this is really identifying that it is getting so complex in the world of targeted testing, targeted treatments today, that it literally requires in some places and settings an FTE or multiple to try to navigate testing, pathology, external labs, medical oncology, pharmacy services, nursing administration, and then, of course, patients and caregivers, and communication and context building, working with patient advocacy groups who are out there publishing great resources on testing and what they mean and targeted treatments. But trying to put all of that together, I will admit as a community clinician, as you probably see 15, 18, 20 patients a day, sometimes with as many different discrete types of cancers, it gets overwhelming.

And so, having a support person on staff who can help you manage some of that information and the patient-provider conversations, ACCC is very, very much about recognizing multidisciplinary teams of providers, so it’s critical to have navigation, to have social work providing distress screening and psychosocial support, to have pharmacists talking about targeted therapies and how they match with, to Dr. Wakelee’s points, mutations and fusions and rearrangements and everything we’re testing for with our big panels of next-generation sequencing, right? So I really want to encourage us all to utilize as patients and as team members, everybody else on the team, which is also to say patients and caregivers, are team members too, right? They have rights and responsibilities as members of their own team. And I will end with this, I say all of this, and I feel justified in saying all of this because we’ve done research at ACCC, and without that critical infrastructure, there’s potentially a real disconnect. So, for example, we asked patients with lung cancer what resources would be most impactful for you as you embark on your treatment journey, and they said things to us like psychosocial support and financial assistance.

When we asked the provider respondents a similar question in their own survey, the number one thing they identified, they thought patients needed were educational handouts or websites to go seek information about their diagnosis. Now that’s not to shake a finger at anybody or to say that you were right or you were wrong, that’s just to say, we need people who can approach this whole patient-provider construct from different perspectives, because Leigh is going to ask different questions than Heather is going to ask, than Nicole is going to ask, and that’s the beauty of multidisciplinary care coordination. We do need to come at it from different angles, different perspectives, and always make sure we’re remaining open and inclusive and asking what patients need and want right now. Because we don’t always have the answers, we have to remember that. We’re human, we have biases, it’s always better to ask and provide and then ask again.

Dr. Nicole Rochester:

You are really speaking my language, Dr. Boehmer.

[laughter]

Dr. Nicole Rochester:

And I see, Dr. Wakelee, both of us are shaking our heads the entire time that you’ve been speaking and just around this idea of multidisciplinary teams that include the patient and the family, and ideally at the center. Dr. Wakelee, do you have anything to add?

Dr. Heather Wakelee:

Hard to add. That was very impressive, Dr. Boehmer, [laughter] and highlighting that just…we talk about multidisciplinary sometimes, the first version, some people think of it’s just it’s a team of a few different types of doctors. And obviously that’s not at all what we’re talking about, this is to provide the best possible care for a patient dealing with cancer, that physician-to-patient interaction is critical, but the patient to physicians to family is critical. And then you’ve got to also think about all the psycho-social needs and whether that’s going to be with a social worker or… We have a lot of people working in oncology who are psychologists and psychiatrists particularly focused in that because the coping with the disease is such a big part of it. And it’s also the pharmacy teams and the nursing teams. It is…multidisciplinary is many, many different levels of circles, but at the core, it’s the patient and family and the primary physician, that’s kind of the way I think at it, but I’m an oncologist, so perhaps I’m a little biased in my viewpoint there.

But it’s that communication right there where you sort of have all of the information that the physician’s holding, that’s coming from all of the different treatment disciplines, and then you’ve got all the information that the patient’s holding, that’s coming from their understanding of them and all of their other aspects of their life, and that’s sort of that interaction at the core, and making sure that both sides are seeing each other and seeing all of the other layers of that, so that you could make sure that at each point the recommendations and what the patient is actually doing, everyone’s coming from a point of understanding. I think, to me, that’s the most critical piece. And you don’t have that understanding if you don’t also have all the information you need about the tumor, and you’re not making that right decision if you don’t have all the information you need about all the aspects of who that patient is as a person, and that goes into their decisions as well, and that’s to me, that’s what we’re aiming for, right? 

Dr. Nicole Rochester:

Absolutely, you all have done such an incredible job really highlighting the importance of involving the patient and family, involving this multidisciplinary team, which as you said, Dr. Wakelee, it’s not just a bunch of different types of doctors. So before we conclude, I just want to talk a little bit about that communication, because most of you have shared how important that communication is, and we know that there are challenges, inside and outside of cancer with regard to communicating with patients, and certainly as a physician that some of the complexity of the topics that you all have discussed I would admit is even a lot for me, and so we can imagine that for someone without any medical training, this is very difficult, these topics of biomarker testing and genetics and mutations and precision medicine. So I’d love for you, Dr. Wakelee, to start by just sharing some best practices, things you’ve learned over the years with how can providers who are watching this program really engage in effective, thoughtful conversations with patients and their family members about biomarker testing?

Dr. Heather Wakelee:  

So that’s a great, great question. And really, the communication is to me, like I said, the core there, when I’m talking about biomarker testing with the patient, I usually try to frame it from the context of what makes the cancer different than the rest of you. And what we’re trying to figure out is what is it about the cancer that makes it different than the rest of you, so we can then target what’s different, and hopefully with that, being able to control the cancer without harming the rest of you. So that’s sort of one framework of it, and depending on the patient’s level of understanding, and then sort of layer in different levels of…for people who are understanding DNA and mutations, then you can start talking about those specifics, and for folks who don’t necessarily want to think about it that way, or haven’t had the education about it that way, then just starting from that framework. And I think about it this way too, is how is the cancer different than the rest of the person? And what can we do to therefore attack the cancer differently than we would the rest of the person?

And then from there, if there is a mutation or a translocation or something else that we found, can use the name of that gene and say, “This is different in the cancer than in the rest of you, and this is a targeted therapy that’s going to go after that, and it’s going to work for a period of time, but the cancer is always evolving.” And so we kind of plant that seed from the beginning also, that it’s not curing, that the cancer continues to evolve, and eventually it’s going to change in a way where that doesn’t work, but for right now, that’s the best treatment. So that’s how I’m going about with that communication with people on it. And then, again, I practice in Silicon Valley, so a lot of people will come in with books, practically, of all the research that they’ve done, and so that’s a very different conversation than someone who comes in and says, “Whatever you think is best, doc.” And even when I hear that, which I don’t happen to hear too often anymore, I really feel it’s critical that the patient is still understanding, why are we picking this treatment for your particular cancer, and what are our expectations from it?

Dr. Nicole Rochester:

I really appreciate the plain language, and I think that’s important, and also your acknowledgment that patients come to us with different levels of knowledge and expertise, and so really it’s about meeting them where they are, so I really appreciate that. And, Dr. Boehmer, we’re going to allow you to wrap up on this topic, I know that the Association of Community Cancer Centers has done research about what patients want to hear and some of the biases around providers, maybe thinking that patients don’t want or don’t need some of this information, that it may be too confusing for them, so I’d love for you to share some knowledge around your experience in this area and some best practices around communicating with patients.

Dr. Leigh Boehmer:

Thanks very much, I appreciate the opportunity, I’ll try and keep it targeted. I think number one, Dr. Wakelee, you’re correct. We have visual learners, auditory learners, we have people that want more direction and less direction, so simply starting by asking, how do you prefer to learn? It’s a wonderful place to start. It could be drawing pictures, it could be giving them that academic print out of literature published in a cutting-edge journal. But we need to know how patients learn and respect the fact that we’re all individuals and we as providers talking to patients may need to alter our approach based on different patients’ characteristics. I also think our research has shown that consistent terminology must, must be utilized, biomarker testing, molecular profiling, next-generation sequencing, mutation analysis, whatever it is, that you have decided to make your consistent terminology, please in your teams, then in the next level of teams, then in your health system, and then with your colleagues, talk about what it is, why it is, does it go against another group or is it in agreement with A, B, C groups. Because we have to, as a collective, really agree on and start utilizing consistent terminology, because until we do, we’re just continuing to stir the pot and cause confusion amongst patients, caregivers, other patient advocacy organizations and ourselves.

The other thing I’ll say, at ACCC, we’ve got a lot of resources aggregated in one place about shared decision-making, what it is, how to do it, how to assess yourself, health literacy, how do you evaluate your program to make sure you’re asking the right questions before you ever, ever have a conversation with a patient about biomarker testing or different targeted treatments for patients with non-small cell lung cancer? There’s little things that you can do today that’s so important. Little things you can do today that will make a positive influence on your patients’ outcomes and experience just by asking, addressing your own biases, being inclusive with your language and using consistent terminology. All of that is on our website and it’s truly incremental. Go easy on yourself, we’re all learning here, and acknowledging your bias and trying to be more inclusive is very, very worthwhile, and it’s okay if it’s small steps every single day made.

Dr. Nicole Rochester:

A wonderful way to end this program. I have learned a lot as always, I’m sure that those of you watching have as well. We have talked about the challenges around biomarker testing on the clinician side, on the patient and family side, we’ve explored some amazing solutions to some of these challenges and barriers, and I just want to really thank both of you for being here, and lastly, give you an opportunity if there’s something that you really feel like we should have talked about that we didn’t get to. Any closing thoughts or anything that you want to leave the audience with. And I’ll start with you, Dr. Wakelee.

Dr. Heather Wakelee:

Thanks. I think just to make sure everyone is always thinking, if you’ve got a patient and they’re coming to see you and they have lung cancer, that you’ve done the biomarker testing, that the patient understands about it, that you’ve had an opportunity to include that as part of the conversation whenever you’re talking about treatment.

Dr. Nicole Rochester:

Thank you, Dr. Boehmer.

Dr. Leigh Boehmer:  

The only thing I would add is that if you’re thinking about creating resources, if you’re trying to target at-risk populations or communities in your area, please always, always remember to invite those individuals as you are talking, creating and disseminating. Because we don’t have all the answers, and that’s okay. I give you permission, but please invite people in and let them be a part of the discussion and the proposed solutions.

Dr. Nicole Rochester:

Wonderful. Well, thank you again to both of you, Dr. Wakelee, Dr. Boehmer, this has been an amazing conversation. And thank you again for tuning in to this Empowering Providers to Empower Patients program.

Dr. Leigh Boehmer:

Thank you.

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What Is MRD-Positive Acute Myeloid Leukemia?

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What Is MRD-Positive Acute Myeloid Leukemia? from Patient Empowerment Network on Vimeo.

What do acute myeloid leukemia (AML) patients need to know about MRD-positive AML? Dr. Catherine Lai from Penn Medicine discusses minimal residual disease (MRD). Learn about the meaning of MRD, complete remission, and MRD testing methods.

[ACT]IVATION TIP from Dr. Lai: “Ask if MRD testing can be done on your bone marrow biopsy at the time at which you or after you’ve had your chemotherapy.” 

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Transcript: 

Art:

Dr. Lai, what is MRD-positive AML?

Dr. Catherine Lai:

So, that’s a really good question. And to answer that question, I’m going to actually answer a different question, which is, What is the definition of complete remission? So the definition of complete remission is when we do a bone marrow biopsy, and we have less than 5 percent of those blasts or leukemia cells in the bone marrow, and that is also in the setting of a relatively normal immune system or normal other blood counts have improved, so that your neutrophil count is above 1,000, and your platelet count is above 100,000. So, MRD, which stands for measurable residual disease, means that you’re in complete remission, so you have less than 5 percent blasts, but you’re more than zero.

And we, in general, when patients who are MRD-positive, we know that if you were to do nothing, that those patients have a high likelihood of relapse. We know for the patients who are going to transplant, if you’re MRD-positive before transplant, those patients also have a higher likelihood of relapsing after transplant. And so we tend to monitor it if possible…the tricky thing is, is that there is not a standard way to measure MRD testing as of yet, the common approaches are right now are with either flow cytometry or with PCR or next-generation sequencing, if you have a particular targeted mutation that we can follow.

So your activation from that standpoint is to ask if MRD testing can be done on your bone marrow biopsy at the time at which you or after you’ve had your chemotherapy. 

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Should All MPN Patients Undergo Molecular Testing?

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Should All MPN Patients Undergo Molecular Testing? from Patient Empowerment Network on Vimeo.

Dr. Gabriela Hobbs discusses the necessity of molecular testing for myeloproliferative neoplasm (MPN) patients, including the pros and cons of this in-depth testing for patients with polycythemia vera (PV) and essential thrombocythemia (ET).

Dr. Gabriela Hobbs is a hematology-oncology physician specializing in the care of patients with myeloproliferative neoplasms (MPN), chronic myeloid leukemia, and leukemia. Dr. Hobbs serves as clinical director of the adult leukemia service at Massachusetts General Hospital. Learn more about Dr. Hobbs.

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Transcript:

Katherine:

How useful is having a genetic panel done? Should all patients get molecular or genetic testing? 

Dr. Hobbs:

Great question. And I think that it is very important to have genetic testing.   

And genetic testing involves more than just testing the JAK2 mutation. So, we know that the JAK2 mutation is the most common mutation in patients with MPN. But that being said, there are other mutations that also occur such as the calreticulin mutation and the MPL mutation.   

And so, I think having genetic testing that at least tests for those three mutations is very important so that we can actually help a patient know that they have an MPN. In addition to those three main mutations, many clinicians now have access to what’s called extended next-generation sequencing, where there’s a panel that tests for many different genes at the same time and can test for a variety of other mutations.  

And this is particularly relevant for patients with myelofibrosis. As we know that having other mutations, like, for example, mutations in IDH or ASXL1 and others, can increase the risk of that disease in terms of its risk of transforming to leukemia or how long a patient may live with their myelofibrosis. 

And so, I do recommend having extended next-generation sequencing done at least at diagnosis.  

When I generally think about repeating that, if there’s something that looks like it’s changing within the patient’s disease, to be honest, also on the flipside of that argument, sometimes this next-generation sequencing will mostly contribute to adding anxiety and will not necessarily directly impact how a patient is treated. And this is particularly true in patients with PV and ET, where we’ll sometimes order these tests, and we get a bunch of mutations back, but we don’t know what to do with that information yet.  

And so, as a researcher – not a clinician – as a researcher, I think it’s very important to have that information so that we can then do studies and understand the patterns of mutations and how that affects outcome. But as a clinician, and you as a patient, you need to really be aware of how that’s going to impact the patient in front of you and how that may impact you as a patient. Do you want to know if you have these mutations if nothing can be done about it? So, I would say, take a moment to reflect upon what I said and also to ask your clinician, how is this information going to help me? Do I need to have this information?  

Maybe you want to have it done so that it’s in your record. But maybe you don’t necessarily want to know those results. And everybody’s very different. And I think it’s absolutely wonderful to talk to my patients about all the information. But there may be some patients that really are just, like, do the test but don’t tell me the results, because I know that I’m just going to be very anxious knowing that I have something that I can’t do anything about. So, just take a minute to talk about it with your doctors. I think that’s really important.