Tag Archive for: targeted therapy

How Close Is Personalized Medicine for Myeloma?

How Close Is Personalized Medicine for Myeloma? from Patient Empowerment Network on Vimeo.

Therapy targeting specific mutations or abnormalities is becoming increasingly common in cancer care, but are we there in myeloma? Dr. Ashley Rosko discusses how clinicians are using test results and patient factors to move closer to individualizing myeloma care.

Dr. Ashley Rosko is Medical Director of the Oncogeriatric Program at the Ohio State University Comprehensive Cancer Center – The James. Learn more about Dr. Rosko.

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Transcript:

Katherine:

Dr. Rosko, in many other cancers, we’ve been hearing about targeted therapies and immunotherapies. In some cases, a specific mutation or chromosomal abnormality may indicate that a particular treatment may be effective. Are we there yet in multiple myeloma care? 

Dr. Rosko:

Yeah, so, myeloma care is always a little bit different. So, myeloma, being a blood cancer, is different than other solid tumors, and how we treat it is also a bit different. So, unlike solid tumors, in which we look at the size of a cancer and then if it’s in different places in the body. In multiple myeloma, it being a blood cancer, just by definition it’s throughout the body. So, we have to be able to estimate or stage cancers differently or stage myeloma differently. And it is based upon the cytogenetics that Dr. Cottini just outlined to you.  

So, to get back to your question, Katherine, I didn’t forget about, how do we define treatment, how are some of these therapies being defined specifically and personalized for persons with multiple myeloma? And we do do that. And it is based a lot upon the DNA of those cancer cells and whether or not they’ve acquired what I would call a standard-risk changes or whether or not they’ve acquired a biology that makes them tend to act more aggressively. Now, again, these DNA differences – not all cancers follow the book, and not all therapies are unique to these. 

But what it does help us to do as clinicians to say, “Well, we have standard risk mutations within these cancer cells, and then we can define oftentimes how many drugs a patient gets when they’re newly diagnosed. Just like many other cancers, our treatments for multiple myeloma can be a combination of pills or shots. And then, if patients carry mutations that tend to act more aggressively, we tend to be very aggressive with their upfront therapy. For many patients, would receive three medications. Patients with more aggressive disease biology may receive four medications. 

And it’s very unique upon many characteristics. It’s not only based upon the cancer cells’ DNA but also the health of the patient. The health of the patient really defines also the ability to tolerate treatment. So, many patients are – myeloma has a lot of heterogeneity to it, where some patients with myeloma can’t believe that they could possibly have this cancer. 

You know, it’s really kind of picked up subtly, with blood abnormalities. And then some patients with myeloma come into the hospital very very sick, with having kidney damage or having infection. And it runs the gambit between being asymptomatic really and having patients coming in quite unwell. That also influences our treatment decisions. So, when we think about the question about whether we have different immunotherapies or targeted therapies based upon the genetic changes within the myeloma cancer cells, the answer is yes, we do shape therapy that’s tailored around the type of abnormalities within the cancer cells. 

But unlike some cancers, where if the cancer cells carry a specific marker, we give a specific drug, that’s not quite where we’re at with multiple myeloma, in terms that providing therapy is saying, “If you carry this mutation, this is what you should get.” 

So, it’s a very long answer to say to you that we do personalize therapy based upon changes within the DNA, but we also base it upon how fit the patient is and how their health was prior to developing cancer.  

Katherine:

Dr. Cottini, what mutations or abnormalities are you looking for? 

Dr. Cottini:

So, as Dr. Rosko said, and as I quickly previously mentioned, so there are different types of DNA tests that we can do. One is this FISH test, and that’s a standard test. It’s usually done practically everywhere. And it practically tells us if there are specific deletions or changes. 

And we don’t really have yet a specific medication that we know works for specific abnormalities. But all this information is important to decide, as Dr. Rosko said, number of drugs, and maybe that can be helpful in the future when hopefully thanks to the research, we will be able to say, “Based on this abnormality, you would benefit more from this type of treatment.”  

There are other types of tests. One is called DNA testing, so we look at the mutation. So, really to point to small changes of a particular gene. This is done not routinely, but I think it can still give lots of good information. And there are lots of genes that are normally myeloma, that has potential drugs that have been studied, those with multiple myeloma and any other type of cancer.  

What Should Ovarian Cancer Patients Know About Immunotherapy and Targeted Therapies?

What Should Ovarian Cancer Patients Know About Immunotherapy and Targeted Therapies? from Patient Empowerment Network on Vimeo.

What do ovarian cancer patients need to know about immunotherapy and targeted therapy? Expert Dr. Ebony Hoskins explains how immunotherapy and targeted therapy are used, research about them, and advice to patients.

Dr. Hoskins is a board-certified gynecologic oncologist at MedStar Washington Hospital Center and assistant professor of Clinical Obstetrics and Gynecology at Georgetown University Medical Center. Hoskins sees women for gynecological malignancies, which include the treatment of endometrial, ovarian, vulva, vaginal and cervical cancers.

[ACT]IVATION TIP

“…asking ‘Has my tumor been studied, or has there been any sequencing to determine if they are a candidate for targeted therapy?’”

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Transcript:

Mikki:

Dr. Hoskins, what is the role of immunotherapy or targeted therapy in ovarian cancer care?

Dr. Ebony Hoskins:

So the role of immunotherapy, I think is still kind of ongoing. We’ve seen some improvements with endometrial cancer, not so much the same with ovarian cancer. In terms of targeted therapy, there are new drugs that are coming out that are targeting a different molecular markers in the actual tumor that are now offered for patients with ovarian cancer. And that’s been shown to be proven to work and improve the response and survival. My activation tip, particularly for patients who are affected by ovarian cancer, is asking, “Has my tumor been studied, or has there been any sequencing to determine if they are a candidate for targeted therapy?”

Mikki:

Thank you.


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Head & Neck Cancer Treatment Decisions: What’s Right for You?

Head & Neck Cancer Treatment Decisions: What’s Right for You? from Patient Empowerment Network on Vimeo.

When considering treatment options for head and neck cancer, what helps determine the best approach for YOU? Dr. Ari Rosenberg discusses key factors that impact head and neck cancer treatment decisions, emerging research, and tips for partnering with your healthcare team.

Dr. Ari Rosenberg is a medical oncologist and assistant professor of medicine at The University of Chicago Medicine. Learn more about Dr. Rosenberg.

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What Do Patients Need to Know About Head and Neck Cancer Research?


Transcript:

Katherine:

Hello, and welcome. I’m Katherine Banwell, your host for today’s webinar. In this program, we’re going to help you learn more about head and neck cancer. What it is, how it’s treated, and we’ll share tools to help you work with your healthcare team to access the best care.

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

Finally, 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. Ari Rosenberg. Dr. Rosenberg, welcome, would you please introduce yourself?

Dr. Rosenberg:

Thanks so much, Katherine, for having me on the webinar. So, having introduced myself, my name is Ari Rosenberg, I am a medical oncologist focused on the treatment of head and neck cancer.

Katherine:

Excellent. And where are you based?

Dr. Rosenberg:

So, I practice out of University of Chicago, in Chicago, Illinois, and practice as part of a multidisciplinary head and neck cancer team, including head and neck surgeons, radiation oncologists, and many other support members of the treatment team.

Katherine:

Great. Thank you so much for taking the time to join us today, we really appreciate it.

Dr. Rosenberg:

Absolutely.

Katherine:

Well, let’s start by understanding what head and neck cancer is. Is it a group of cancers?

Dr. Rosenberg:

Yeah, that’s a great question. So, head and neck cancer is really any type of cancer that develops from the head and neck area. Generally arising from sometimes the mouth, the throat, the voice box are some of the more common areas, but even the sinuses or the nasal cavities are some other areas where head and neck cancer can arise.

The majority of head and neck cancers are actually called squamous cell carcinoma. About 95 percent are squamous cell carcinomas, and they tend to arrive from the mucosal lining of some of these different parts of the head and neck area.

However, the other 5 percent are other types of head and neck cancers, such as salivary gland cancers, or other rare types of cancers that can also arise in the head and neck.

And within head and neck squamous cell carcinoma, there’s really two different types that we think about – in 2023 at least. One is HPV-associated squamous cell carcinoma of the head and neck, which is associated with a virus called HPV, or human papillomavirus. And, of course, we also see HPV-negative, or non-HPV-related cancers, which are the squamous cell carcinomas of the head and neck that can be associated, for example, with smoking or alcohol as the major cause of effect.

Katherine:

How is head and neck cancer staged?

Dr. Rosenberg:

Yeah, so after the diagnosis of head and neck cancer, there’s generally a number of tests that are done to determine where it spreads to.

Where it started, where it spreads to, to figure out what the best treatment approach is. So, oftentimes, that starts with a physical examination, often in combination with an ENT, or a head and neck surgeon. Oftentimes, that will involve endoscopy, which is a camera that the ENT uses to look very closely and carefully on the extent of the tumor itself.

Additionally, we generally tend to use imaging as well, in order to stage or determine the extent of where the tumor might have spread to. Oftentimes, that involves imaging of the head and neck, of course, so that’s sometimes a CT scan, or an MRI scan. Oftentimes, it involves imaging of the chest to see if there’s been any spread to the chest or the lungs, that’s oftentimes a CT scan of the chest.

And typically, that also involves, in many cases, a PET CT scan, which is a specialized scan that actually looks at the whole body and identifies where, in as precise a manner as we can determine, where the cancer has spread to.

So, I would say that’s generally the overview. Some of the subtypes may have some other tests that may be specific to your specific scenario, but I think those are some of the more general staging evaluations that we do.

Katherine:

Okay, good. There can be a number of people on a head and neck cancer patient’s care team. Would you give us an overview of who these team members might be, and what their roles are?

Dr. Rosenberg:

Yeah, absolutely. And this is one thing, actually, that I enjoy about treating head and neck cancer which is that because of the complexity of the head and neck in general, cancers that arise really do require a multidisciplinary team to figure out what the best treatment approach is.

And not only that, but most of the treatment plans that we incorporate for the treatment of head and neck cancer involve a very large and robust support team that provide different perspectives and help in optimizing outcomes for patients.

So, the three types of oncologists in our program, for example, all new patients that come in meet all three of these types of oncologists. So, one is an ENT, or a head and neck oncologist, or a head and neck surgeon, that’s one important member of the team. The second is a radiation oncologist. So, a radiation oncologist is the team member that uses radiation to treat head and neck cancer. And the third is someone like myself, a medical oncologist. We’re the ones that do the chemotherapy, or other types of systemic therapy, or other types of things like that.

And those are really the three tools, and the three oncologists that use those tools to figure out what the best treatment approach is. However, because many of the treatments that we give, whether it’s surgical treatment, or whether it’s some combination of chemotherapy and radiation, or of chemoradiation, there are many side effects of treatment. And as such, there are many other team members that are involved in supporting patients and optimizing outcomes through any of those treatment modalities.

So, that oftentimes involves specialized nursing, speech and swallow doctors and pathologists, dentistry, and prosthodontics. Sometimes other types of surgeons are involved, like neurosurgeons, or skull-based surgeons, or nasopharynx surgeons as well.

As well as nutrition and dietician, physical therapy, psychosocial supportive services. I’m probably missing many, but on and on, really are all involved in the care of patients during treatment. And not only that, but even in the non-patient facing side, there are other team members also that are very important that a patient may not meet, such as the pathologists that help us determine the subtype of the cancer, whether it’s HPV related or not. Sometimes some of the genomic makers and things like that that can be very important, or immune markers that are very important for treatment decisions.

We have radiologists that have expertise in the head and neck space that help us determine exactly the extent of the disease and look at the imaging in a multidisciplinary fashion. Again, I probably missed some of the team members offhand, but yes, it’s definitely a team sport, which is really, really important.

Katherine:

Yeah, it sounds like there’s a lot of people involved in helping care for patients. I’d like to pivot now to talk about treatment options for head and neck cancer. What types of treatments are currently available?

Dr. Rosenberg:

Yeah, so it depends on lots of factors, and part of that is the type, and the stage, and the location, and things like that, but I can give some general perspectives. For very early-stage head and neck cancer, oftentimes, the treatment is either surgery or radiation alone, oftentimes some of the treatments. However, a lot of times, head and neck cancer can be local regionally advanced, or having spread to some of the local areas, such as lymph nodes within the head and neck space, and there it’s quite variable.

Sometimes patients will get surgery first, followed by – depending on some of the specific factors – radiation, or radiation and chemotherapy afterwards.

And oftentimes, for local regionally advanced head and neck cancer, treatment can include non-surgical therapy, such as chemoradiation, or chemotherapy and radiation-based approaches. And then, of course, for more advanced cases, either cases of head and neck cancer that either come back after treatment, or in cases that have spread to other parts of the body, we have other therapies, such as immunotherapy therapy, or immunotherapy with chemotherapy, or some of those kinds of treatment. So, generally, those are some of the options. But again, with head and neck cancer, it’s extremely personalized.

The most important thing is that a multidisciplinary team is able to review the case as a group to figure out what type of treatment approach will optimize not only the likelihood of cure and survival, but also long-term function and quality of life. And whatever treatment modality is needed to achieve those goals, that’s what should be recommended with that type of multidisciplinary team.

Katherine:

Yeah. Dr. Rosenberg, you touched upon this just a moment ago, but I would like to ask you to this question. Are the options different in any way for advanced or metastatic disease?

Dr. Rosenberg:

So, the answer is yes, and the short answer is it depends. But I think the longer answer is that we have therapies that have been shown in more advanced disease, and we’re really talking about cases where cancer has come back, or has spread to other parts of the body, where we have new treatments that help patients in that challenging situation live longer. The main one has been the development of immunotherapy as a treatment option, either alone or in combination with chemotherapy, and that has really improved outcomes for patients with very advanced head and neck cancer treatment and cases.

Katherine:

What about palliative care? How can it help people with head and neck cancer?

Dr. Rosenberg:

Yeah, so, I’ll start by defining palliative care, which I sort of would suggest is either a treatment team, or strategies to help palliate, or relieve, the symptoms associated with cancer, or with cancer-related treatment, which unfortunately for head and neck cancer can be quite substantial. The location of cancers in the head and neck space can have a very large impact on pain, quality of life, speech, swallowing function, and man, many more. And the treatments as well, chemoradiation, surgery, things like that in the head and neck space can also have major impacts on quality of life, and some of those symptoms that patients can experience.

So, oftentimes, management of those treatments – whether with appropriate pain medicines, medicines to help with some of the other side effects of treatment – even support for speech therapies, swallowing therapy, physical therapy, therapy to help with lymphedema, or some of the swelling that can occur with treatment – can all be very, very, very important.

So, when patients come to my clinic, we spend much of the time discussing the treatment, and making sure that the treatment against the cancer is the right thing. But also, quite a bit of time focusing on what other things do we have to do to optimize that patient’s outcome, both in terms of survival, as well as function and quality of life.

Katherine:

Yeah. Well, that leads us to my next question, which is where do clinical trials fit in?

Dr. Rosenberg:

Yeah. So, clinical trials are really important for head and neck cancer because as much as we have tools to treat the disease, the tools that we have are suboptimal.

They’re what we have, they’re what we use, and they can be quite successful in many cases, however, we can do better. We need better treatments for head and neck cancer. So, broadly, the clinical trials can actually be across multiple different treatment settings, whether earlier stage disease, or later stage disease. And the goal of the clinical trials are often to develop better treatments. What can that mean? Treatments that work better against the cancer, so help patients live longer with better quality of life.

Sometimes clinical trials evaluate strategies to reduce the toxicity, or the side effects associated with treatment, so many trials are trying to evaluate strategies to reduce some of those kinds of side effects with the treatment. And then many trials are also trying to use, for example, new biomarkers, or new tests, which can help sometimes predict which is the right treatment for the right patient.

One patient may need a more aggressive treatment, one may need a less intensive treatment. So, at our center, for example, we have clinical trials that, depending on the particular circumstance for those patients, that are trying to take what we have as the current standard, and build on that, to either improve survival and outcomes for patients, or reduce side effects, or both in order to optimize patient outcomes.

Many of our clinical trials incorporate new immune therapies. So, immune therapy treatments are strategies that harness the body’s immune system to attack cancer, and we’re trying to identify new ways to do that. Some of our clinical trials are focused on trying to make the radiation, or the chemotherapy and the radiation, a bit more precise, and focused on the specific tumor. And some are focused on identifying what the best treatment would be for one particular person’s tumor, because we know that actually it’s many different diseases.

And so, we want to really figure out what the optimized treatment is for giving patients that increases survival while reducing treatment-related toxicity. Again, that’s really the overarching goal of what we’re trying to achieve with clinical trials for head and neck cancer.

Katherine:

Yeah. What about emerging approaches for treating head and neck cancer? Is there research going on that patients should know about?

Dr. Rosenberg:

Yeah, definitely. So, many new drugs are being developed for head and neck cancer with many different treatment strategies. I would say given the success of immune therapy recently for head and neck cancer, and other cancer types as well, many are trying to build on that, and identify better immune therapies that work better against cancer therapies. Some are targeted therapies, so developing new drugs that maybe target a specific mutation, or a specific change in a particular patient’s tumor that would be appropriate.

And the other thing that is being developed is strategies that incorporate, for example, blood tests that can sometimes measure tumor DNA in blood in a non-invasive fashion that can reveal all sorts of specific information about that particular patient’s tumor, how they’re responding to therapy, and can hopefully help optimize and personalize therapy. So those are some of the more emerging approaches that are being developed in clinical trials for head and neck cancer.

Katherine:

That’s encouraging, thank you. Well, we’ve covered treatment approaches, let’s talk about treatment goals. What are the objectives of treatment?

Dr. Rosenberg:

Yeah, so really, I would put them in sort of two different categories when you think about the goals of treatment. Number one is survival, or, if possible, achieving a cure, right? Cure meaning a treatment that five, 10, 15, 20 years down the road, we don’t see any evidence of recurrence, and trying to give the best opportunity for that.

And living as long as possible for patients, I think, is the number one goal, and we do that with identifying the most effective treatments and support for a given head and neck cancer in a given situation. However, the other very, very important goal of treatment is to optimize long-term function and quality of life. Because in the setting of a very effective treatment against the cancer, we also want patients to have good function. What does that mean function? Speech, swallowing, ability to eat, taste. Have those things that are very, very important for quality of life, and we want to figure out whatever tools we need to achieve both of those goals, and optimize both of those goals, which can be different from patient to patient.

Katherine:

Yeah. Well, what factors are considered when choosing a treatment?

Dr. Rosenberg:

So, first of all, we think about the diagnosis, right? Is this a squamous cell carcinoma, or is this a different type of cancer, like a salivary gland cancer, or a thyroid cancer, because those are treated very differently. In terms of squamous cell carcinoma, we use the information about whether it’s HPV or non-HPV-related head and neck squamous cell carcinoma, and that has major implications for prognosis, and, therefore, potential treatment or clinical trial options.

We also think about the location of the tumor, and the extent, and the stage. So, is this is a very small tongue cancer, or is this a very large cancer that started in the back of the throat that has already spread to lymph nodes? Both of those, obviously, would be very different treatment options. So, location, and the extent of spread.

Oftentimes, treatment considerations need to take into account – or always, I would say – take into account a patient’s specific factors. How old, other medical problems, other medications, previous treatments that patients have received, are very, very important. And then today, in 2023, we have many targeted molecular characterizations, so we can actually obtain a lot of information from the tumor itself that can also help identify the biological character that can help predict which is the right treatment for a given patient.

So oftentimes, that means looking for genetic mutations, HPV DNA in tumor, or immune markers, such as PDL1, which is an immune marker that we use to predict responsiveness to immunotherapy. These are all datapoints that come into our evaluation to identify what the best, really unique, treatment approach would be for a given patient.

Katherine:

What about symptoms and side effects? What should people be worried about?

Dr. Rosenberg:

Yeah. So, oftentimes when patients come to us with a new diagnosis of head and neck cancer, when looking back, they’ve had, sometimes, symptoms for a while, whether it’s a nagging ulcer on their tongue, or some difficulty with speech, or a new hoarseness, or a lump in the neck that turns out to be a cancerous lymph node.

And so, even before we get into the diagnosis of head and neck cancer, I do think it’s important for people to know that, in particular, if some of these symptoms – particularly if they’re lasting for a while and not going away with more conservative measures like antibiotics – really need to be evaluated by an ENT and a doctor team to make the diagnosis of head and neck cancer, so it can be treated.

The side effects of treatment very much depend on the treatment modality that’s used. So, for example, when chemotherapy and radiation, and chemoradiation is utilized, oftentimes, the treatment itself could be associated with a lot of side effects from treatment. Things like a sore throat, things like skin changes, things like fatigue, challenges with nutrition, and a plethora of other things that, depending on some of the specifics, can be associated. Which is one of the reasons why we’re trying to figure out if there are some patients that we can deintensify the radiation, or do more precise radiation, rather than standard, regular dose radiation for everyone. But that’s of course in the context of some of the clinical trials that are being evaluated for improving outcomes for head and neck cancer patients.

Katherine:

Yeah. What do you feel is the patient’s role in making treatment decisions?

Dr. Rosenberg:

Very important. You always discuss the situation of the patient, in terms of their cancer. What their diagnosis is, what some of these characteristics are, what the staging is, what the extent of disease is. And then we talk to the patients about what their goals are, what’s most important to them, and figuring out what the treatment paradigms are that help to meet those goals.

And so, it’s very, very important, and it’s very important that patients have a conversation with their oncology treatment team for head and neck cancer about what their goals, what’s most important to them, and how they can best achieve those goals in the context of head and neck cancer treatment planning.

Katherine:

Yeah. So, it sounds like there’s a lot of factors taken into consideration then.

Dr. Rosenberg:

Definitely.

Katherine:

I’d like to turn to self-advocacy now. If a patient is feeling uncomfortable with the direction of their treatment plan or their care, do you think they should consider a second opinion, or even consult a specialist?

Dr. Rosenberg:

So, yes. I think, especially if a patient is feeling uncomfortable, it is always a good idea to get a second opinion, and to have another fresh set of eyes evaluate the case. Whether it means that that second opinion will reinforce the plan and give the patient more confidence in the plan that was proposed, or whether it means a potentially alternative plan that may be suggested for different reasons. And that allows the patient to have the autonomy and the facility to be able to help figure out which of the treatment team that is most appropriate for them.

At the end of the day, head and neck cancer doctors want what’s best for patients. They want patients to do well, and that means that supporting patients in whatever – they want to do what will be best for them. I think all of us want that for patients. I think that’s definitely the case.

Katherine:

Yeah. What would you say to patients who may be nervous about maybe hurting their doctor’s feelings by getting a second opinion? Can you reassure them in some way?

Dr. Rosenberg:

Yeah. I mean, I would say that you shouldn’t worry about that, because doctors really do truly want their patients to do well. We go to this field because we want to help people, we want to help patients do better. And oftentimes, that means second opinion. So, I could tell you that I’m highly supportive of that.

And the other thing I’ll just say is that head and neck cancer is a really specialized type of cancer, in terms of cancer treatment. And so, it is a good idea, in my view, and in my opinion, to be evaluated by an experienced head and neck cancer treatment team. One of the treatment teams that tends to see a very large volume, has a lot of experience treating head and neck cancer because that experience, I do think, is important for optimizing treatment outcomes.

Katherine:

If a patient is having a difficult time voicing their questions or their concerns, are there members of the support team who might be able to help?

Dr. Rosenberg:

Yeah, so there’s lots of phenomenal organizations that can help direct, because it’s a complex navigation that’s difficult for anyone, particularly in a patient with a new head and neck cancer diagnosis. The Head and Neck Cancer Alliance is one that comes to mind, but there’s many support groups for patients.

And so, I would suggest if there’s uncertainty, those groups are available to help patients help to navigate the system. And so, I think that would be one area where patients could reach out to, which is patient advocacy organizations, patient advocates, in order to help to navigate whatever the patient wants, whether it’s a second opinion, whether it’s support, whatever’s needed to see what’s out there. Because again, we all want patients to do well and want to support patients however we need to in order to optimize some of those outcomes that I talked about earlier.

Yeah. So, in our program, for example, we have experienced nurse navigators that help coordinate all the care at our center, but also help direct.

Because the best person to talk to may be the speech pathologist, depending on the question, or it may be the psychosocial team, or it may be the surgical team or the radiation oncology team. A lot of times, a nurse navigator or a point person for questions can help direct who’s the best person to address that particular question. Sometimes those questions are best addressed by social work and supporting patients through that.

So, I would suggest asking when you get your consultation, “Who’s my point person for questions? If I have a question, and I don’t know who the right person is to ask, who do I pose that to, to make sure that it gets pointed to the right person?”

Katherine:

Right. To close, what would you like to leave the audience with? Are you hopeful about the future of head and neck cancer?

Dr. Rosenberg:

I am. I think that there’s lots of exciting things in the pipeline that are leading to what I hope will be improved treatments for head and neck cancer that optimizes survival, but also optimizes long-term function and quality of life. And so, I hope that, Katherine, when you and I speak in 10 or 20 years, we’ll be in a totally different place, a totally different landscape, thinking about totally different things than we are today, to really optimize outcomes for patients. So, we’ll talk within in 20 years, or maybe sooner, whatever works for you.

Katherine:

Yeah, things are changing so rapidly, aren’t they? Yeah. Well, Dr. Rosenberg, thank you so much for taking the time to join us today.

Dr. Rosenberg:

Absolutely, thanks so much.

Katherine:

And thank you to all of our partners.

If you would like to watch this program again, there will be a replay available soon. You’ll receive an email when it’s ready. And don’t forget to take the survey immediately following the webinar, it will help us as we plan future programs.

To learn more about head and neck cancer, and to access tools to help you become a proactive patient, visit powerfulpatients.org. I’m Katherine Banwell, thanks for joining us today.

AML Targeted Therapy: How Molecular Test Results Impact Treatment Options

AML Targeted Therapy: How Molecular Test Results Impact Treatment Options from Patient Empowerment Network on Vimeo.

How could the results of molecular testing affect your acute myeloid leukemia (AML) treatment choice? Dr. Sanam Loghavi explains how inhibitor therapy works to treat AML.

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

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Transcript:

Katherine Banwell:

Dr. Loghavi, how do molecular test results impact the care plan and treatment choices? 

Dr. Sanam Loghavi:

Sure. So, again, associated with really two major factors in the care of the patient. One is the decision of how intensely to treat the patient and whether or not the patient is a candidate for a hematopoietic stem cell transplant. And then the other is the availability of targeted therapies to those patients.  

So, there are now several molecular alterations that make the disease amenable to treatment with targeted therapies, including mutations in FLT3, which is a name of a gene, mutations in IDH1, IDH1 or IDH2. And again, depending on the change, the patients may receive targeted therapy. 

Katherine Banwell:

Dr. Loghavi, you mentioned inhibitor therapy. What is this treatment, and how does it work? 

Dr. Sanam Loghavi:

Sure. So, again, it depends on the medication and it depends on the molecular change. 

But essentially what happens when you have a mutation in a gene the normal function of that gene is impaired and a lot of the times that’s why you develop leukemia is because of the impairment of that normal function. So, usually what targeted therapies do, if that mutation is causing an apparent activation of let’s say a signaling molecule, then those targeted therapies will block that signaling. Or if it’s a deregulation of an epigenetic – and epigenetic means beyond genetic, so epigenetic factor, then the goal of that targeted therapy is to maintain that normal function or restore that normal function. 

What Do Lung Cancer Patients Need to Know to Build a Treatment Plan?

What Do Lung Cancer Patients Need to Know to Build a Treatment Plan? from Patient Empowerment Network on Vimeo.

What do lung cancer patients need to know about treatment options? Expert Dr. Lecia Sequist shares an overview of treatment classes for non-small cell lung cancer (NSCLC), advice for patients, and how each treatment class works against cancer.

Dr. Sequist is program director of Cancer Early Detection & Diagnostics at Massachusetts General Hospital and also The Landry Family Professor of Medicine at Harvard Medical School.

[ACT]IVATION TIP:

“…ask your doctor if immune therapy, targeted therapy, or chemotherapy are appropriate for your cancer. And if not, why not? There’s probably a good reason if they’re not recommending one of those things. But just make sure that you understand why you’re getting the treatment recommendation that you are.”

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Transcript:

Lisa Hatfield:

Okay. Dr. Sequist, what are the different treatment options for lung cancer?

Dr. Lecia Sequist: 

That’s a really important question. And there are so many treatment options. But I think a way that I often explain it to my patients is sort of thinking in broad strokes and categories. So one way to think of it is there’s three main types of doctors, types of specialists that treat lung cancer. And they each have their own type of treatment that they offer. So there are medical oncologists like myself, who give drugs or different medical treatments. Some of them come in pills, some of them come in intravenous infusions, but they’re all medications. Then there are radiation oncologists who give radiation, which is strong, but invisible X-ray beams that are focused at the cancer to try and kill the cancer cells that way. And then there are surgeons who, that’s some of the most, that’s the one that people usually can understand the easiest.

They’re going to cut out a cancer surgically. And so together, the surgeon, the radiation oncologist and the medical oncologist will work together to come up with the best treatment plan for each patient. Now within my field, which is medical oncology, again, we have lots of different types of medicines that we can give for lung cancer, but most of them fall into three main buckets or types. So one of them is traditional chemotherapy. Chemotherapy drugs, there’s a whole bunch in this bucket. There’s a lot of different chemotherapy drugs. But what they all have in common is that they’re trying to kill dividing cells. They’re counting on the fact that maybe the cancer cells in the body are dividing more often than the healthy cells. And so if it goes in there and kills all the dividing cells, you’re going to kill more cancer than healthy cells.

The second type of treatment that medical oncologists give lung cancer patients is targeted therapy. These are drugs that go after some kind of target or flag or marker on the cancer cell. So a lot of times the oncology team will want to test the cancer to see what markers exist, and then if they have a treatment that goes after those markers, that’s called targeted therapy where you’re giving someone a treatment because of the markers that are seen in their cancer. A lot of those markers are found in genetic testing, but some are found through other types of testing. And then the third bucket of cancer drug treatments is called immunotherapy. And these are treatments that are trying to convince the body’s own immune system to fight the cancer. We’re supposed to be fighting things that are foreign to our body, like infections or bacteria and cancers. But sometimes when a cancer is developed, it’s tricked the immune system into ignoring it.

And so what we try to do with immunotherapy is wake up the immune system, explain what the trick is and say, hey, this is the foreign thing that you’re supposed to go after and try and kill. And so depending on the type of cancer that someone has, where it is in their body, what markers are on the tumor, then your doctors can come up with what they think is the most aggressive or likely to work combination of radiation or chemo or drug treatments that might, that might include traditional chemotherapy or targeted therapy or immunotherapy.

So my activation tip for this question would be to ask your doctor if immune therapy, targeted therapy, or chemotherapy are appropriate for your cancer. And if not, why not? There’s probably a good reason if they’re not recommending one of those things. But just make sure that you understand why you’re getting the treatment recommendation that you are. 


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Lung Cancer Clinical Trials 201 Resource Guide

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The Role of Antibody Drug Conjugates in Lung Cancer Care

The Role of Antibody Drug Conjugates in Lung Cancer Care from Patient Empowerment Network on Vimeo.

What are antibody drug conjugates (ADCs)? Expert Dr. Grace Dy defines this new class of therapy and explains how ADCs work to treat lung cancer.

Dr. Grace Dy is Chief of Thoracic Oncology and Professor of Oncology in the Department of Medicine at Roswell Park Comprehensive Cancer Center in Buffalo, New York. Learn more about Dr. Grace Dy.

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Transcript:

Katherine Banwell:

What is the role of antibody drug conjugates in lung cancer care? 

Dr. Grace Dy:

So, the antibody drug conjugates are an exciting new class of therapy. In fact, it’s been developed for decades, but we had the first antibody drug conjugate that was just approved less than a year ago in lung cancer. And that’s the drug called trastuzumab deruxtecan (Enhertu). It seems like we’re always steps behind our breast cancer colleagues. 

You know, trastuzumab deruxtecan was first developed in breast cancer patients. But hey, we also find we can have some subset of patients who will derive benefit from that. But that’s just one example. There’s plenty of antibody drug conjugates that are being developed. 

So, what are antibody drug conjugates? So, as the name implies, it’s an antibody that is attached to a drug that is actually typically chemotherapy, but you can use any other drug. Generally, it’s a chemotherapy. So, you can think of it as a targeted way of delivering chemotherapy because the antibody is very specific to a certain protein. And generally, what we try to do is look for proteins that are more expressed in cancers than in normal tissues. And you try to target that and improve the therapeutic index by using a more potent chemotherapy and potentially increase efficacy that way.

What Biomarkers Affect Lung Cancer Care and Treatment?

What Biomarkers Affect Lung Cancer Care and Treatment? from Patient Empowerment Network on Vimeo.

Lung cancer driver mutations can have an impact on therapy choices for patients. Dr. Grace Dy discusses the various lung cancer driver mutations and how treatment options may target specific markers.

Dr. Grace Dy is Chief of Thoracic Oncology and Professor of Oncology in the Department of Medicine at Roswell Park Comprehensive Cancer Center in Buffalo, New York. Learn more about Dr. Grace Dy.

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Transcript:

Katherine Banwell:

How does testing impact treatment and care? 

Dr. Grace Dy:

So, back in like maybe more than two decades ago, I was still in school. The treatment paradigm is sort of like a one size fits all. You come in with a lung cancer diagnosis. Everybody gets treated the same.  

But with advancements in technology and understanding of actually what we call lung cancer is really genetically very different from one patient to another. We are actually not even still able to tease out all the particular details, but there are some improvements that have been made along the way. And so, defining, for example, mutations in cancers, there are what we call driver mutations that have a matched targeted therapy.  

In certain patients, actually the target therapy works so much better than chemotherapy, for example. And that’s why we have it in guidelines based on the results of clinical trials showing that in the appropriate setting, if you have a mutation that we discovered through molecular testing, and then you use the matched target therapy, survival is so much better compared to, for example, chemotherapy.  

Same with immunotherapy. If we use a biomarker to test out which patients may actually respond well to immunotherapy alone – so, that’s a major treatment paradigm change within the less than 10 years wherein we define there’s a group of patients where that’s all they need. Non-chemo, just immunotherapy, and they will do well. 

Katherine Banwell:

What are some of the mutations that are being targeted? 

Dr. Grace Dy:

Right. So, it seems like every year, it’s growing. So, it started off with the poster child in lung cancer story of EGFR. So, we have EGFR mutations. Even EGFR mutations, they’re a subtype of mutations for – there are certain drugs that work better for certain mutations.  

So, we have the classical EGFR mutations, the atypical EGFR mutations. But EGFR mutations as a group are probably the most characterized given the longevity of the research that has been done. But there’s a lot more. 

So, for example, ALK, KRAS, BRAF, HER2, NTFK, NRG, RET, MET. Even those mutations, they’re all these new ones. It’s between the subtype of mutations. For example, we talked about EGFR. Same thing with MET. You have MET exon 14 skip mutations. But in the absence of MET skip mutations, there are also what we call MET gene amplification, MET protein over-expression that have matching therapies that may actually work better. 

But we’re still kind of scratching the surface. There’s a whole lot more being characterized and developed. Case in point, just a little over a year ago, there’s an LTK Fusion that was described. Very rare. But there’s a target therapy for it. So, unless you test it, you won’t find a matching targeted therapy. 

An Expert Explains Predictive Biomarker Testing for Lung Cancer

An Expert Explains Predictive Biomarker Testing for Lung Cancer from Patient Empowerment Network on Vimeo.

What is lung cancer biomarker testing? Dr. Grace Dy defines both biomarker and molecular testing and explains how these test results are used in lung cancer patient care.

Dr. Grace Dy is Chief of Thoracic Oncology and Professor of Oncology in the Department of Medicine at Roswell Park Comprehensive Cancer Center in Buffalo, New York. Learn more about Dr. Grace Dy.

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Transcript:

Dr. Grace Dy:

My name is Grace Dy. I’m a thoracic medical oncologist at Roswell Park Comprehensive Cancer Center here in Buffalo, New York. 

Katherine Banwell:

Thank you for being with us today.  

Dr. Grace Dy:

Thank you for having me. 

Katherine Banwell:

What is biomarker testing, and is this the same as molecular testing for non-small cell lung cancer? 

Dr. Grace Dy:

That’s a very good question. So, let’s first maybe define what biomarker means. So, biomarker is an all-encompassing term relating to a measurement of a biological parameter. That’s what it means.  

So, you can actually have biomarker related to imaging. So, it’s not specific to a particular test. But what it’s trying to do is to guide doctors in making decisions. So, you can have, for example, a PET scan as a biomarker to indicate the effectiveness of therapy. 

So, it’s not specific to a test. So, it’s a broader scope. But in cancer, generally, it’s used interchangeably with molecular testing. And molecular testing is a more focused test on the genetics of the cancer.  

In some aspects, sometimes it also refers to testing for proteins, characteristics of different proteins in the cancer. Again, to help doctors generally define what might be a better treatment option that is personalized to the patient’s cancer. 

In some instances, the biomarker can also be what we call prognostic, meaning independent of what we do with the treatment, it may define to us how well a patient will survive or have their outcomes, whether they have treatment or not. 

So, those are maybe the nuances between a predictive versus a prognostic biomarker. But for all intents and purposes, the most common test that we use for lung cancer patients are what we call predictive biomarker testing. Molecular testing is one of the ones that we often commonly request to help us define treatment modalities, especially in non-small cell lung cancer. 

Lung Cancer Clinical Trials | Addressing Common Patient Concerns

Lung Cancer Clinical Trials | Addressing Common Patient Concerns from Patient Empowerment Network on Vimeo.

Considering a lung cancer clinical trial can feel overwhelming and brings up a number of questions. Dr. Grace Dy reviews common concerns from patients, and explains how and when placebo may be used in trials.

Dr. Grace Dy is Chief of Thoracic Oncology and Professor of Oncology in the Department of Medicine at Roswell Park Comprehensive Cancer Center in Buffalo, New York. Learn more about Dr. Grace Dy.

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Transcript:

Katherine Banwell:

What are some common concerns you hear from patients when discussing lung cancer clinical trial options?  

Dr. Grace Dy:

When I discuss clinical trials, the first question generally patients ask is: well, how effective is the drug, right? And the second question will be: well, what are the side effects? And those are very valid questions, but we may not always have an answer to it, especially if they’re in early phase. I do a lot of early phase clinical trials, meaning sometimes we don’t even know the proper dose of the drug to use, for example.  

And the intent of the trial, for example, in Phase I, generally, is to find out what is a proper dose to use that is safe and effective before we can do a test in Phase II setting using the recommended dose to test it out more rigorously how well it works. And if it passes Phase II, then we go to Phase III, which then generally is comparing it with the standard to see whether it will be better or at least equivalent or non-inferior. 

And you may ask, “Well, why even do a non-inferior?” Because, well, some drugs, it may not prolong your life more than current therapies, but if it has better side effect profile, right? So, there are actually drugs that are approved through non-inferiority trials. But those are the common concerns, and I think another common concern that I hear when I talk about trials, patients are concerned about receiving placebo. 

Katherine Banwell:

And what do you tell patients? 

Dr. Grace Dy:

Well, it depends on the design of the trial and the question that is being answered. So, in fact, for example, some situations in the standard of care is not to do anything. The best way to remove bias is to administer a placebo because the standard care would be not to do anything. And those, generally, are Phase III, you know. An early phase, Phase I, Phase II generally there are no placebo involved. I mean, there are some randomized Phase II trials that there are placebo involved and I explain to the patient why placebo may be involved and it’s usually on top of a standard of care. So, there could be a standard of care therapy but you add something else. So, you want to compare it with a new drug plus the standard of care. So, you might add placebo so that the doctors will not be bias when they measured their scans, for example. They say oh, this patient is getting this experimental drug. So, they’re excited. They might oh, you know, make it look better than what it actually is.  

Katherine Banwell:

Now, as a researcher yourself, do you always know that a placebo is part of the clinical trial testing?  

Dr. Grace Dy:

Yes, it will be in the design. So, it will say there is a placebo control. So, the title, or the design, generally will tell you this is a randomized, double-blind placebo control. Usually if there is a blinded there might be some placebo involved because then you don’t know what people are getting.

Improving Communication Around Lung Cancer Biomarker Testing

Improving Communication Around Lung Cancer Biomarker Testing from Patient Empowerment Network on Vimeo.

How can communication around lung cancer biomarker testing be improved? Experts Dr. Heather Wakelee and Dr. Leigh Boehmer share advice for framing conversations with patients about biomarker testing and ways to adjust communication to different learning styles.

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Transcript:

Dr. Nicole Rochester: 

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. 


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How Does Data Inform Lung Cancer Biomarker Testing?

How Does Data Inform Lung Cancer Biomarker Testing? from Patient Empowerment Network on Vimeo.

Lung cancer biomarker testing now has actionable data for clinicians and patient advocates to utilize for improved patient care. Experts Dr. Heather Wakelee and Dr. Leigh Boehmer discuss barriers to time-critical testing, patient communication advice, and health outcome benefits backed up by data.

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Improving Communication Around Lung Cancer Biomarker Testing 

Transcript:

Dr. Nicole Rochester:

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? 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 immune therapy.

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 the 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. 


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

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 AML Mutations Are Associated With Adverse Outcomes?

What AML Mutations Are Associated With Adverse Outcomes? from Patient Empowerment Network on Vimeo.

Which acute myeloid leukemia (AML) mutations are linked to adverse outcomes? Dr. Naval Daver from the University of Texas MD Anderson Cancer Center shares insight..Learn about different mutations, treatment options, and the importance of testing.

[ACT]IVATION TIP from Dr. Daver:Check for mutations to the frontline setting…absolutely, these include FLT3, IDH1, IDH2, TP53, and NPM1 MLL this list will likely continue to grow as we get more targeted therapies in immunotherapies and find benefit in particular subsets, but also in the relapse setting to not depend on the baseline molecular profile because the lipids actually can change. We do see AML as a multiclonal disease, and there can be emergence and escape of different clones, so to check again in the relapse for those same mutations and both in the frontline, the relapse setting.

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Transcript: 

Art:

Dr. Daver, what mutations are associated with adverse outcomes in AML? What are the best time points to check for these mutations, and what therapeutic options do you consider for patients or harboring these mutations?

Dr. Naval Daver:

This is very, very important, a mutational targeted therapy is probably the biggest overarching change that has occurred in acute myeloid leukemia in the last decade, and of course to implement those therapies. One has to know the mutational profile, the five big mutations that whenever I speak to my patients in clinic today that I talk about wanting to know before I embark on any therapy are FLT3 or FLD3, IDH1, IDH2, TP53, and now, more and more recently, NPM1 or MLL, actually six different mutations, cytogenetic operations, and the reason is that we do have targeted therapies for these mutations, some of these targeted therapies are already approved in the frontline setting like the FLT3 inhibitors, some of these are being evaluated in ongoing Phase III  studies like the CD47 magrolimab for TP53.

As well as the menin inhibitors now in frontline setting in combinations of intensive chemo or HMA venetoclax (Venclexta), or MLL NPM1 but I think identifying these targets and getting the patients on the right clinical trial personalized to that target for them has historically shown significant improvements, 20 to 30 percent survival improvements in FLT3, IDH and potentially for the TP53 MLL NPM-1 so definitely on newly diagnosed, I would recommend getting that information and then going on to either standard of care the drugs already approved or clinical trial that incororates that targeted therapy or immunotherapy for a target in the relapse setting the two most important mutations today, or the three most important are FLT3, then IDH as well as MLL NPM1. 

Three inhibitors like gilteritinib (Xospata) are already approved. Similarly, IDH inhibitors and combinations of gilteritinib or IDH with venetoclax  are really showing very good outcomes, even in relapse three, which about 20 years ago was a very, very, very poor outcome. T

oday, we can get up to 80 percent of these patients to remission, half of them into transplant, and a good number may have long-term survival post-transplant, so it’s very important to not mislead to an IDH1, IDH2 to a relapse setting.

And then now with the menin inhibitors we’re also looking in all our patients for MLL rearrangement, NPM1 in relapse, because this could open the door for menin inhibitor-based therapy, which again can give up to 50 percent remission and a path to transplant. Now many patients at MD Anderson who have gone through too many inhibitors, transplant and are alive and ongoing at two and three years.

So the bottom line is, it’s important you check at my activation tip for this question is it’s important to check for mutations to the frontline setting…absolutely, these include FLT3, IDH1, IDH2, TP53, and NPM1 MLL this list will likely continue to grow as we get more targeted therapies in immunotherapies and find benefit in particular subsets, but also in the relapse setting to not depend on the baseline molecular profile because the lipids actually can change.

We do see AML as a multiclonal disease, and there can be emergence and escape of different clones, so to check again in the relapse for those same mutations and both in the frontline, the relapse setting.

To try to get on to a therapy, whether it’s approved or clinical trial that incorporates those targeted therapies, which has historically shown a significant improvement in both response and long-term survival. 

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