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Head & Neck Cancer: What Do You Need to Know About Evolving Treatment and Research?

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Head and neck cancer research is evolving rapidly, leading to expanded treatment options for patients. Expert and researcher Dr. Ezra Cohen discusses key factors that impact head and neck cancer treatment decisions, reviews emerging research, and provides tips for collaborating with your healthcare team.
 
Dr. Ezra Cohen is a medical oncologist, head and neck cancer researcher and Chief Medical Officer of Oncology at Tempus Labs.

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See More from Evolve Head & Neck Cancer

Related Resources:

What Head and Neck Cancer Treatment Options Are Currently Available?

What Head and Neck Cancer Treatment Options Are Currently Available? 

 What Factors Impact Head and Neck Cancer Treatment Decisions?

What Factors Impact Head and Neck Cancer Treatment Decisions? 

 Head and Neck Cancer Staging | What Patients Need to Know

Head and Neck Cancer Staging | What Patients Need to Know 

Transcript:

Katherine:                  

Hello, and welcome. I’m your host, Katherine Banwell. As patients collaborate on treatment decisions with their healthcare team, it’s important that they understand all of their options and how these options may be impacted by research developments. And that’s why the Patient Empowerment Network, or PEN, created the Evolve series. To arm you with the latest information and help you feel empowered and confident during conversations about your care. In today’s program, we’re going to hear from an expert in the field about the evolving treatment landscape and discuss how you can play an active role in your care.

Before we meet our guest, let’s review a few important details. The reminder email you received about this program contains a link to program materials. If you haven’t already, click that link to access a guide to help you 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. And finally, before we get into the discussion, please remember that this program is not a substitute for seeking medical advice. Please refer to your healthcare team about what may be best for you.

Well, let’s meet our guest today, Dr. Ezra Cohen. Dr. Cohen, welcome. Would you please introduce yourself?

Dr. Cohen:                  

Thanks very much. Thanks for the invitation. So, I am Ezra Cohen. I am a medical oncologist and have been involved in head and neck cancer research for about 20 years in the laboratory and in the clinic. And it’s been my main focus of research for that time period.

Thanks for having me.

Katherine:                  

Well, thank you so much for taking time out of your schedule to join us today. As you know, head and neck cancer research has been progressing quickly. What recent developments do you think patients should know about?

Dr. Cohen:                  

Well, there are a lot, really. And I think probably the first and foremost is the impact that immunotherapy is having on treatment for head and neck cancer. And that is mostly in the form of a drug called pembrolizumab (Keytruda). It’s an anti-PD1 antibody that really – what it does is stimulate a specific cell type in the immune system called T cells. And now, it’s approved for the treatment of patients with recurrent or metastatic disease. However, for patients, I think probably the most important development over the last little while is the realization of the important of the multidisciplinary team in the management of patients with head and neck cancer.

It used to be that the care was driven by a single oncologist or a single individual, but over the last, I would say mostly over the last decade, maybe a little but more than that. There’s becoming this realization more and more and the implementation, of course, of these multidisciplinary approaches involving a surgeon, a radiation oncologist, a medical oncologist, but much more than that. A speech and language pathologist, a swallowing expert, nutritionist, psychologist, pharmacists, dentists, of course oral surgeons.

With the, now, the prospective data to validate that in a multidisciplinary setting, with a multidisciplinary tumor board where each patient is discussed with all of these individuals providing input. The outcomes are substantially better. And so, for patients, I think that that’s had the greatest impact, because we’re talking about patients who can be cured for the most part.

And those cure rates increasing just simply by getting the right people involved in their care.

Katherine:                  

Yeah. Very important, then. As I mentioned a few minutes ago, patients should be aware of all of their options. How can patients stay informed as the treatment landscape expands and changes?

Dr. Cohen:                  

Yeah. It’s challenging because not only are patients and their caregivers grappling with this diagnosis, and it’s a brand-new world for almost all of them. Many patients have never had to deal with cancer ever before. Pile onto that the functional and social aspects of having head and neck cancer. Remember this is a cancer that affects so much of what makes us human – our ability to communicate, to speak, to eat, to swallow. And so, now, patients are flung into this situation, and it is challenging to find good information.

Having said that, often the oncologists that are involved in the person’s care should be a great source of information, especially if those oncologists have experience treating head and neck cancer. And incidentally, just as an aside, there is also data and mounting data that the more experienced a center is in treating head and neck cancer, the better the outcomes. And so, that’s something that patients may want to think about as they choose their providers.

But then there are also public sources. There are support groups for head and neck cancer. The Head and Neck Cancer Alliance is one of those. SPOHNC is another and they’re excellent sources of information for patients. American Cancer Society is always a very good source of information, mostly for cancer basics but they do have the pages that are dedicated to head and neck cancer.

And then the American Society of Clinical Oncology, or ASCO, actually does have a patient-facing part of their organization, and that can help not only with information about the disease, but it can also help find providers that have a specific interest in this type of cancer.

Katherine:                  

Those are all great resources. Thank you. A key part of research moving forward is the clinical trial process. Can you talk about the benefits of patient participation?

Dr. Cohen:                  

Of course. And I’m certainly a firm believer. It’s been part of what I’ve been doing for, again, over 20 years. And, so, certainly I think clinical trials are a critical component of our ability to produce better outcomes and move forward. The sobering reality is that only 3  percent of adult patients actually participate in clinical trials.

Katherine:                  

Wow.

Dr. Cohen:                  

And if we’re really going to move the field forward and be where we want to be with cancer, and that is to either cure as many people as we can or turn cancer into a chronic disease, better yet in many individuals, detect it early and prevent it. We need much greater participation in clinical trials. So, that being said, nothing is going to happen, we are not going to make strides forward in therapeutics and diagnostics, whatever in prevention, without clinical trials. Even the basic standards of care that we engage in now, and I mentioned that drug pembrolizumab, that was approved on the basis of a large randomized clinical trial.

Now, having said that, I think patients – part of the responsibility is on patients to ask their provider, “Well, what about clinical trials?” There is almost always a clinical trial that is available given a specific setting. The challenge is that it may not be available where the patient is seeking care. And there is a large disconnect in that regard.

Now, there are different organizations that are trying to improve that, improve the diversity of participation in clinical trials and the equality of availability of clinical trials to the entire population, not just people going to large academic medical centers. But, that’s the first thing I would tell patients, is part of the list of questions that you have for your provider, especially at the beginning and throughout the entire process, is there a clinical trial that would be applicable to my situation?

And if the answer is, “Well, no.” The follow-up should be, “Well, what about in the area?” Or, “What about something that may not necessarily be available in this practice but what about somewhere else in town or somewhere I could access?” Of course, that may not be possible for all patients. But if it is, I would encourage all people to ask that question. And then there is a large responsibility, I think, on providers to make clinical trials available if we’re going to improve that number from 3 percent.

There are a lot of exciting agents being studied now in head and neck cancer – immunotherapy drugs, antibody drug conjugates, novel mechanisms, cell therapies, vaccines. So, there’s certainly no paucity of interest in developing drugs in head and neck cancer and technologies as well. So, there are clinical trials available, and I think we, as a community, need to make a – need to do better in enrolling patients on those studies.

Katherine:                  

Yeah. Before we talk about the currently available treatment options, I think for many people there’s confusion about what neck and head cancer is. How would you describe this group of cancers?

Dr. Cohen:                  

Yeah. And we do make it confusing, a little bit. So, the confusion is well-founded. When I talk about head and neck cancer, and I think when most of us talk about head and neck cancer, we’re really thinking about three major cancer types. The first is mucosal squamous cell carcinoma. I’ll get into that in just a second. The second is thyroid cancer, and the third are salivary gland cancers. Those are the cancers that I primarily see in my head/neck cancer clinic. We don’t see brain cancer. A lot of people think, “Well, head and neck cancer should include brain cancer.” Brain cancer really is a completely different entity, different biology, different set of physicians, different set of treatments.

And so, the way I explain it simply is everything above the clavicles but not the brain. Having said that, the majority of patients that we see in our clinic, do have squamous cell carcinoma. And those cancers start in the lining of the mouth and the throat. So, tongue cancer, throat cancer, larynx cancer, those all fall under head and neck cancer, and those are the most common malignancies that we see.

Katherine:                  

How are innovations in technologies accelerating head and neck cancer research?

Dr. Cohen:

I think, in many ways. First there’s – we mentioned the multidisciplinary approach of head and neck cancer. and each of the disciplines, the major therapeutic disciplines, being medical oncology, radiation and surgery, really have had dramatic technological advances in the last, certainly in the last decade, maybe a little bit longer.

For the surgery, it’s been the ability to do minimally invasive surgery, usually through a robot called transoral resection. And this is, as the name implies, literally a robot that’s controlled at the side of the operating room or even sometimes controlled remotely. But the advantage is that the instrument is much smaller than the human hand, and it can articulate in every degree possible. Which, obviously, the human hand has restrictions.

So, in other words, that robot can get into places and get into areas that would be very difficult without a much bigger surgery if done without the robot. And now, that surgery called TORS, transoral robotic surgery, has become pretty well, pretty standard for cancers of the base of the tongue and the oral pharynx.

That is really the back of the throat. Whereas in the past, in order to access those areas, the patient’s jaw would have to have been split, and the area had been opened. Now, that’s not necessary at all, and the surgery has turned into a much, much faster recovery with equivalent oncologic outcomes. And, of course, there’s more advancements going on in that regard.

For radiation, I think the most relevant technological advances have been the ability to focus radiation through different means on the tumor and spare normal tissue. Whether that’s with something called IMRT, which is essentially a much more sophisticated way to deliver radiation that is controlled by a computer that allows the radiation fields to be contoured around structures in a 3D fashion, much more than we were able to do prior to that.

And, of course, the other way is to use a different type of energy. Whereas conventional radiation, when we talk about radiation, we’re talking about photons. Protons, now, are becoming more widely available. And that particle has a different way to deliver energy and can actually spare normal tissue but still deliver the energy desired to the tumor. So, tremendous advances in radiation.

And then, of course, for medical oncologists, we’ve had advancements in both diagnostics and in therapeutics. 10 years ago, sequencing a cancer, deciphering the genes that drive it, the mutations that drive it, was uncommon. And, in fact, even I dare say, frowned upon by the community.

But now, there isn’t a patient that I see who has recurrent or metastatic disease that I don’t sequence. I sequence them all.

Katherine:                  

Wow.

Dr. Cohen:                  

Because the technology is readily available and quite honestly, it gives us more information that we might be able to apply to the treatment of that patient. So, that’s been a very large, a very big advancement. And then, of course, therapeutically we’ve had different agents that we’ve been able to look at. I mentioned immunotherapy. There are many new drugs that are being tested and hopefully very soon even approved for patients with head and neck cancer.

Katherine:                  

That’s great. I want to mention to our viewers that if you want more basic information, PEN has created a head and neck caner toolkit, which includes information about diagnosis and staging. And you can find it at powerfulpatients.org. So, Dr. Cohen, I’d like to move onto treatment approaches, and you’ve already mentioned some of them.

What is the typical route for a head and neck cancer patient? Does it start with surgery?

Dr. Cohen:                  

Well, it really depends. And what I said is that head and neck cancer, for the most part, is a locally advanced disease. And I say that because it has certain implications about the way we think about treating patients. And what I mean by that is that the great majority of patients with head and neck cancer will initially present with either a localized tumor or a tumor with involved lymph nodes.

In other words, and that’s 90 percent, 90 percent of patients will present that way. In other words, it’s actually uncommon for patients with head and neck cancer to present with metastatic disease. That’s different than many other cancers. Lung cancer, pancreatic cancer, breast cancer, many times in those situations, patients when they come to the attention of a physician, unfortunately, already have metastatic disease. That’s not the case with head and neck.

And so, what does that mean to have a disease that’s locally advanced? Well, the most important thing, the first thing, is that most patients, we are going to be treating with curative intent. That is, we’re going to try to cure the disease. The second thing is that the disease, and its treatment, are going to have functional outcomes, potentially for that patient.

And that gets back to something I was saying before in terms of think about how much of how we define being human happens above the clavicles. It’s really what makes us human. And so that has dramatic implications obviously for the patient. So, for head and neck cancer, the fact that it’s a locally advanced disease means that we’re going to think about curing the majority of patients, at least try to. But, we’re also going to think very strongly about how can we preserve those critical organs of swallowing and speaking and socializing?

It also is a disease that tends to recur or come back in a locally advanced fashion. And that’s the other part of why I call it a locally advanced disease. So, unfortunately, oftentimes when head and neck cancer recurs, and obviously we try to avoid that, it comes back in the same area. And, of course that has the same implications for what we try to do with treating patients.

Katherine:                 

So, even using radiation and chemotherapy, other immunotherapies, the cancer will still come back?

Dr. Cohen:                  

Yeah. Yeah. And I realized I didn’t really answer your question in terms of the approach to the patient. I just gave you some general guidelines. So, let me step back and talk a little bit about that. And then we can talk about the integration of different modalities.

Katherine:                  

Sure.

Dr. Cohen:                  

The approach really, it depends on a few things. The primary is really where the tumor is, where the primary tumor is.

nd the reason behind that is what I as saying about the functional outcome. For instance, if somebody has a small tumor of their tongue, of the front of their tongue let’s say, a surgeon can easily remove that and the patient can continue to speak and swallow normally. And so, in cases like that, obviously we would do surgery first and then, if the patient needed it for whatever reason, we might follow up with radiation or chemotherapy.

The converse is true for a tumor that may be farther back in the throat. So, let’s say an area called the oropharynx that involves the throat that you can see, the part of the throat that you can see when you open your mouth widely. Well, if we take out a tumor there, that will have much more significant implications for long-term function. The patient may not be able to swallow or speak normally again.

And so, for those types of tumors, we would take a non-surgical approach. Not that surgery couldn’t be done, it could. But, sometimes it’s better not to do surgery up front to preserve function. So, again, it’s those two goals that we have to keep in mind. We want to cure the cancer, but we want to preserve function.

Katherine:                  

Right.

Dr. Cohen:                  

Then you mentioned about chemotherapy, radiation, immunotherapy. And in a non-surgical approach, that’s what we would do first. We would do either radiation therapy alone, or radiation and chemotherapy. And that primarily depends on how extensive the cancer is. The more advanced it is, the more likely we are to add chemotherapy. Because we know from clinical trials, getting back to the importance of clinical trials, we know that adding chemotherapy in advanced cancers does improve survival. And so, that’s predicated on really where the cancer is and how large it is.

Katherine:                  

What about treating more advanced disease? Are the choices different?

Dr. Cohen:                  

Sure. Well, let’s define what we mean by more advanced. If the cancer is still localized, so even if it’s advanced, let’s say it’s a large tumor that’s invading other structures. Let’s say there’s a lot of lymph nodes involved. We would still take – assuming the patient, ultimately, it’s always the patient’s decision. We would recommend to the patient often that we try to take a curative approach. And that curative approach in quite locally advanced cancers would almost involve everybody, so, chemotherapy, radiation ,and surgery. Almost always involve those things to try to eradicate the cancer. If we’re talking about an advanced cancer in the sense that the cancer had come back, so it’s recurrent or it had metastasized, then we really are talking about mostly systemic therapy or some sort of drug therapy.

And now, that almost for all patients, includes immunotherapy. Again, based on the results of clinical trials. That’s relatively new. That’s been approved now for about five years, maybe six. But it has led to dramatic improvements in outcome for these patients. Now, when we look at the long-term data from these clinical trials, we’re beginning to see that about one in five patients with recurrent or metastatic disease are still alive five, six, even seven years later. That’s something that we did not see in the past. And so, immunotherapy has been a tremendous advance forward. Now, of course, the other side of that is four out of five patients are still dying so we clearly need to do better. But the fact that one out of five is surviving is amazing.

Katherine:                  

Yeah. Yeah. Okay. It’s a lot. It’s a lot to take in and consider. And I can’t imagine how difficult it is for the patients and the caregivers. So, now that we understand what the approaches are, how is a path decided then or determined for an individual patient? Is there key lab testing that can impact prognosis and treatment options?

Dr. Cohen:                  

Once a patient comes to the attention of the team, and that will usually be accompanied by some sort of biopsy, some sort of pathological diagnosis to confirm that indeed, we’re dealing with let’s say, squamous cell carcinoma. Then the next thing we want to do is we want to stage the disease. And what that means is basically we want to know as much as possible, or accurately as possible, where the cancer is and how big it is.

So, that would almost always involve scans, usually CT scans, sometimes a PET scan. And we can talk about the advantages and disadvantages of each. Sometimes an MRI in certain situations. But suffice it to say some sort of scan. Some sort of imaging that can tell us where the cancer is, how big it is, if there are any lymph nodes involved and if that cancer has spread beyond the head and neck area. Once we stage the disease, most patients, and I think certainly most patients should be discussed, their pace, that is, should be discussed at a multidisciplinary tumor board. Where, again, all the specialists convene at the same time, and really go over all the data that are available on that individual and come up with a treatment recommendation.

That treatment recommendation can be a single modality. So, some small tumors can just be addressed by surgery alone, or radiation therapy alone. But, for more advanced tumors, it is often all three modalities: surgery, radiation, and chemotherapy. And the way they’re sequenced, the way they’re implemented, should be individualized for that specific patient. Again, with those two goals in mind: to cure the cancer and to preserve function.

Katherine:                  

What else could guide a treatment decision? For instance, a patient’s co-morbidity, their age, things like that?

Dr. Cohen:                  

All of those things.

Katherine:                  

Yeah.

Dr. Cohen:                  

So, beyond – and those are things of course that we would consider in the discussion, not only at the tumor board but of course with the patient. We know that the therapy that we often recommend is quite aggressive and toxic.

Now, the justification for that is that we’re going to try to cure the cancer. And, so we think, and of course we discuss this with the patient, that putting the patient through this course of treatment is worthwhile, makes sense, because at the end of it, the goal is for the cancer to be gone. Now, not all patients will agree with that and of course, we, based on comorbidities and age and something we call performance status, we also want to make sure that the patient can get through this aggressive treatment. Let me just go on a bit of a tangent and describe the therapy for a patient with local advanced head and neck cancer. It would involve about six to seven weeks of radiation, given Monday to Friday. Usually either weekly, or every three-week chemotherapy depending on the chemotherapy chosen.

And possibly even surgery either before or after the combined chemotherapy and radiation. And so, we’re talking about at least a three-month course of treatment going from the start to recovery. Another three months of side effects that are less intense but still there. And it’s a lot for patients to go through. Patients and their caregivers. And so, if we feel that there’s a serious comorbidity that would not allow the patient to do that, we sometimes have to alter treatment so that obviously, we don’t want to harm the patient with our treatment. Certainly we don’t want to put them in a life-threatening situation. So, we do have to take those things into account. The good thing about all this – or I guess the silver lining, if you will, is that these toxicities get better.

Patients recover. So, what I tell patients is we’re going to put you through hell, but at the end of it, I want to be sitting across from you and saying the cancer is gone, and you’re swallowing, and you’re talking normally.

Katherine:                  

Right. Right. So, there’s light at the end of the tunnel.

Dr. Cohen:                  

Exactly.

Katherine:                  

Yeah. So, that leads me to my next question. Why is it so important, then, for patients to engage in their care and their treatment decisions?

Dr. Cohen:                  

I think it’s critical not only for patients but for their caregivers as well. And really, patients should arm themselves with information. And fortunately, we live in an age where information is more readily available. You don’t have to depend on a single source. Now, granted, that information can be confusing, and sometimes it’s way too confusing. Sometimes that information can even be misleading. So, one does have to be careful.

But, having said that, I think it’s so important for patients to arm themselves with information, different approaches, and what I often tell patients is get a second opinion. With one caveat, that I’ll get to in a second.  Because the reason is this is a life-threatening diagnosis for, unfortunately, many patients. And the first approach, our first chance to treat it is our best chance to treat it. So, you really want to make sure that you’re in a center that you’re comfortable with, preferably one that has experience. A provider that you’re comfortable with, that you feel at ease asking questions, you’re not intimidated and a plan that really makes sense for you and has taken into account what is this individual.

What’s our best approach to this individual? Not to an entire population but what are we going  to do for this person sitting in that chair at this time? Now, the caveat for second opinions, especially for patients with locally advanced disease, there is a time factor. And what I mean by that is I have seen patients get multiple opinions and delay the start of therapy, which we now realize impacts our ability to cure the cancer. And so, I would say it’s fine to get second opinions or even third opinions, but don’t take a lot of time doing it. The earlier therapy starts, the better our chance of curing the caner. So, there is sort of a balance there.

Katherine:                  

Well, that’s great advice, Dr. Cohen. PEN has also created downloadable office visit planners to help you organize your thoughts and communicate effectively with your healthcare team.

And that’s also in the toolkit I mentioned earlier at powerfulpatients.org. And I think this is a good segue into talking about the importance of self-advocacy. If a patient is feeling that they aren’t getting the best care or they’re uncomfortable with the care they’re getting, what steps should they take to change that?

Dr. Cohen:                  

Well, I think the first thing is talk to the provider. Just have that conversation. I think we have to realize that oncologists are human, and they’re people, and sometimes they get very busy. Sometimes they don’t pay attention to as much as they should. And sometimes, they don’t even know that there’s a problem. So, I would say the first thing to do is have a frank conversation with your provider. These are my questions. Don’t be afraid to ask questions. Never be afraid to ask questions. These are my expectations.

Can you meet them? And in my experience, not even just personal experience, but working with many oncologists over two decades, most oncologists will say, “Oh, I didn’t realize that this was what you wanted. Let’s make it happen.” So, that I would say is the first thing. Talk to the people that are already taking care of you.

If, or whatever reason, that doesn’t work and you’re not comfortable, I would ask that provider, “Is there somebody else that – I would like to change. Is there somebody else that you would recommend?” In the worst-case scenario, that might involve going to a different institution. And the reason I say that’s a worst-case scenario is that especially in the setting of locally advanced disease, interrupting therapy or changing therapy in the middle really would have a dramatic adverse impact on outcome.

So, I would try to avoid that as much as possible. If there are natural points in the care where it makes sense to consider a change, I think that would be a lot less impactful and make more sense. For instance, if somebody is going from having completed a course of chemotherapy radiation, they now have no evidence of disease on their scans, and they want to switch to a center that is closer to home, for instance. That makes sense. And we have certainly many patients that do that and that’s a natural transition. But, to change in the middle of care, that can often have a dramatic negative impact.

Katherine:                  

Well, Dr. Cohen, thank you for sharing all this information. I’d like to close with your thoughts on the future of head and neck cancer care. Where are we headed and – excuse me – where are we headed, and what would you like to leave our audience with?

Dr. Cohen:                  

Well, I think there  are a few things I’ll emphasize, and I’ll talk a little but about the future. The first is this is, for many patients, a curable disease, and patients should think about what they need to set themselves up for the best outcome, both in terms of getting rid of the cancer and in terms of function. And I think those are seeking care at experienced centers with multidisciplinary teams and multidisciplinary tumor boards. That’s one.

Two would be that there are a lot of things that are happening and hopefully going to change the way we approach head and neck cancer in the near term. There are already drugs being tested for patients with locally advanced disease that we think are going to improve outcomes dramatically.

And there’s so much happening for patients with recurrent or metastatic disease with different agents and different technologies. That I really think in five years, we’ll be curing more patients with better outcomes in the locally advanced setting, and we’ll have patients that have recurrent metastatic disease where we would have felt that their survival would be counted in months, where it’s going to be counted in years, maybe even some of those patients being cured. So, the future, I think for cancer in general, but certainly for head and neck cancer, is incredibly optimistic.

Katherine:                  

Yeah. It’s such promising news, Dr. Cohen. And I want to thank you so much for joining us today. We really appreciate it.

Dr. Cohen:                  

Yeah. My pleasure. Thanks for the invitation.

Katherine:                  

And thank you to all of our collaborators A– excuse me – and thank you to all of our collaborators. If you would like to watch this webinar again, there will be a replay available soon.

You’ll receive an email when it is ready. And please don’t forget to take the survey immediately following this 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 being with us.

Advances in Small Cell Lung Cancer Research | Hope for the Future

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Advances in Small Cell Lung Cancer Research | Hope for the Future from Patient Empowerment Network on Vimeo.

What new treatments are being studied for small cell lung cancer (SCLC)? Dr. Triparna Sen, a leading researcher in the field, shares promising updates, including advances being made with LSD1 inhibitors, DDR (DNA Damage Response) inhibitors, and DLL-3 targeted therapies.

Dr. Triparna Sen is an associate professor in the department of oncological sciences and co-director of the Lung Cancer PDX Platform at the Icahn School of Medicine at Mount Sinai in New York. Learn more about Dr. Sen.

See More from Thrive Small Cell Lung Cancer

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 Expert Advice for Patients With Small Cell Lung Cancer

Expert Advice for Patients With Small Cell Lung Cancer

 Understanding Small Cell Lung Cancer Treatment Options

Understanding Small Cell Lung Cancer Treatment Options

Transcript:

Katherine:

Dr. Sen, you are a leading researcher in the field. What is the latest research news that you can share with us about small cell lung cancer?

Dr. Sen:

There’s a lot of great research going on in my lab and labs all across the world. I think for the first time in a very long time, we are really trying to dissect the biology of small cell.   

It has been a research in making for many years. I think we have now really come to a point where we are really trying to understand the disease. I’ll go into a little more about the questions you are trying to answer. So, one of the main questions or one  of the main things that kind of is a hurdle to getting durable treatment options is that the frontline chemotherapy and immunotherapy doesn’t work as well as they should even for the approved regimens, which is the chemotherapy and the immunotherapy.  

The patients often do not have durable benefits. Even if patients have durable benefits, it’s only in a very minority of patient population which means in only about 10 to 15 percent of the total patient population actually do have any benefit from the frontline treatment. So, the main question that we are trying to answer is that why do these patients not respond to immunotherapy and chemotherapy in the frontline.  

What are the mechanisms of resistance to chemotherapy and immunotherapy? Primary resistance, what I mean by primary resistance is that patients who never respond. The disease comes back even while they’re getting the frontline chemo. So, the primary resistance, the mechanisms. Of course, when they have acquired resistance after the maintenance regimen when they come back, why are these patients having this acquired resistance to chemotherapy and immunotherapy? Because only when we understand resistance mechanisms will we be able to then come to the combination strategies.

That’s the next area of research is that once we understand the mechanism of chemotherapy and immunotherapy resistance is then coming up with effective combination therapy. So, what should we combine with immunotherapy in order to make immunotherapy better? I’ll give you an example from the research that we did. 

So, our lab focus is, as I said, on making immunotherapy better. What we understood is that there are certain epigenetic modifiers like LSD1.  

Repressing these, repressing LSD1, with a small molecule inhibitor actually augments or benefits the response to immunotherapy. So now, we are looking at LSD1 inhibitors in combination with immunotherapy. That’s one area that we are focusing on. The second are that we published extensively on is DNA damage response inhibitors which really works in combination with immunotherapy and makes immunotherapy response better.  

Now, we are investigating that in the lab the combination strategies of combining these DNA damage response inhibitors with immunotherapy. So, combination strategies. I think always coming up with novel targets. I will mention there are many novel targets that are right now in the clinical trials actually showing really, really encouraging data.  

I’m talking about DLL3 targeted BiTEs or ADCs we have seen that are showing preliminary data. We have seen a really good really good response in patients. So, finding these targets that are very specific for small cell and that can work in these unique population of patients.  

So, DLL3 targeted agents. There are agents that target B7-H3. So, we are looking at these novel targets and where they could fit in the current therapeutic regimen. Finally, since small cell lung cancer is not a surgical disease, we have to look for other options to find biomarkers. So, liquid biopsy. Liquid biopsy, what I mean by that is understanding the disease not just from tissue but also from blood.  

There’s a lot of research that’s happening in understanding the biology of small cell from blood draws from these patients.  

So, the field of using liquid biopsy or understanding the disease from blood draws is one of the areas that many labs, including ours, are focusing on, and how we can utilize these blood samples to then monitor the disease and also understand the resistance mechanisms to various drugs. I think these are the areas that we are investigating and seems, to me, very important areas that we need to address in order to really manage small cell lung cancer.   

Katherine:

What do these advances mean for small cell lung cancer patients? Are you hopeful?  

Dr. Sen:

Oh, yes. Of course. We’re always hopeful. That’s the goal, right. The goal is to have effective therapies that work and that works for a long time. That also benefits the patients in terms of quality of life which means without very severe adverse effects.   

So, very hopeful. Because I think what was limiting us for all those years for the last 40 to 50 years is that we really did not understand the complexity of small cell lung cancer. It is a very complex disease. It is very different from non-small cell lung cancer which has these mutations that you can target drugs against. So, there are this EGFR mutations and KRAS mutations in non-small cell.  

But small cell, it’s not that. It is not a disease where we have these GATA function mutations that we can devise therapies against. It’s a very different disease. The disease is aggressive. The disease progresses fast, and it also changes its physiology very fast. So, I think for the first time, we really are trying to understand the biology. What that helps is then to come with very informed decisions about therapy.  

So, yeah, I’m very hopeful. Because I think we have now targets that we are actually seeing benefits in patients. I think the more and more we understand resistance mechanisms, we’ll also be able to manage that better.   

Katherine:

That’s very promising news. 

Understanding Small Cell Lung Cancer Treatment Options

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Understanding Small Cell Lung Cancer Treatment Options from Patient Empowerment Network on Vimeo.

How is small cell lung cancer (SCLC) treated? Dr. Triparna Sen discusses treatment options for patients with small cell lung cancer, both first-line and second-line therapies, and the important role of clinical trials in patient care. 

Dr. Triparna Sen is an associate professor in the department of oncological sciences and co-director of the Lung Cancer PDX Platform at the Icahn School of Medicine at Mount Sinai in New York. Learn more about Dr. Sen.

See More from Thrive Small Cell Lung Cancer

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Transcript:

Katherine:

How do test results impact care? 

Dr. Sen:

So, you know, once the doctor has confirmed the small cell lung cancer and we have confirmed what stage it is at – what I mean by staging is that it could be either a limited stage disease which is an early stage small cell, or it could be an extensive stage of small cell. The treatment for those two are quite different. So, if it is an early stage or limited stage, patients are usually treated with chemoradiation. If it is an extensive stage or a metastatic small cell, then patients are usually given a standard of care which is chemotherapy in culmination with immunotherapy which is an antibody against PD-L1.  

Katherine:

You’re talking about treatment options that are currently available for small cell lung cancer. What about targeted therapies?  

Dr. Sen:

There aren’t very many therapeutic strategies that are targeted therapies as we speak like we hear from non-small cell lung cancer.  

So currently, like I mentioned, the frontline treatment for small cell lung cancer is with chemotherapy and immunotherapy and maintenance with immunotherapy alone.  

Once the patient relapses, which often is the case – all patients actually have resistance to the frontline chemo-io (chemoimmunotherapy) at some point in time. Once they have a relapse disease, the second line of therapy until now is with either topotecan or irinotecan which are two topoisomerase inhibitors or with lurbinectedin which is in the second line.  

So, when it comes to targeted therapies, so far we a have seen, you know, the conventional way that we think about EGFR inhibitors or KRAS inhibitors, it hasn’t been the case so far with small cell lung cancer. It’s very limited in the current approved setting. But there are many clinical trials that are investigating several targeted therapies that are either targeting – I can speak about that more as I talk about research strategy. But there are many targeted agents that are targeting surface targets like DLL3, B7-H3, or SEZ6. There are other targets that are targeting things like DNA damage repair, proteins, or epigenetic regulators like LSD1. But so far in the approved setting, it is quite limited.  

Katherine:

When we look at what therapies are available, what treatment options are available, what are some typical side effects? How are they managed?  

Dr. Sen:

Some of the major side effects that you see, especially with a frontline chemo-io (chemoimmunotherapy), are very common like you see with other cancer types. Also, it’s usually myelosuppression.  

I think it is prevented or is managed either by dose reduction or treatment delays or treated with transfusion. There has been research that CDK4/6 inhibitors, trilaciclib, when treated with in combination with chemotherapy can bring down the side effects that we see with chemotherapy.  

Some of the immunotherapy related adverse events includes pneumonitis, colitis. They are usually treated with early steroids, treatment withholding, and also it could be leading to permanent discontinuation of the treatment if the adverse events are really severe. Those are mainly what we see we the chemo-io (chemoimmunotherapy) regimen that is given up front.  

Katherine:

Okay. What questions should someone be asking about their proposed treatment plan?  

Dr. Sen:

Right. So, I think, of course, first is what stage. The treatment will depend upon the stage of small cell. Usually, on the frontline, everyone is given chemotherapy and immunotherapy. 

It’s a systemic therapy that’s being given. But I think the patient should be asking questions like are there clinical trials available for me. Because there are multiple clinical trials right now in the frontline and the second line setting.  

So, I think definitely the patient should ask about the clinical trials that the qualify for. In terms of contributing to research, I think if there are options for them to either sign up for blood collection protocol or for tissue collection protocol, I think the patient should definitely enroll for that.   

Because that really helps our research strategy. But in terms of treatment, I think they should ask about available clinical trials that they qualify for.  

Katherine:

Let’s turn to clinical trials then. Patient participation, of course, is essential to finding new and better treatments. What would you say to someone who’s hesitant to participate in a clinical trial?  

Dr. Sen:

Yes. I mean, that’s often the thing. We hear about these novel drugs. They’re in trial. For a disease that’s that aggressive, I think once there is a relapse, I think clinical trials could be a very good option for patients. These are novel drugs that have come out of very robust research that we do in the lab. They can often work quite a bit. So, I think, of course, talk to your physicians. Talk to them at length about whether you do qualify for it. But if there is a trial at the center that you’re getting treated at and if the doctor advises that, I think enrolling in a clinical trial could be a very good option for patients, especially in the aggressive setting where there are not many options available for patients.  

As I mentioned here, research is my true north. I mean, all my lab does is understanding the biology of small cell. It’s extremely essential that we actually try to get the knowledge of the patient tumor. So, if you have availability of contributing either in terms of tissue or blood to research, I think I would advise and encourage patients to definitely contribute to that. 

How Is Advanced Renal Cell Carcinoma Patient Care Managed?

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How Is Advanced Renal Cell Carcinoma Patient Care Managed? from Patient Empowerment Network on Vimeo.

Dr. Moshe Ornstein from Cleveland Clinic delves into the management of advanced renal cell carcinoma, where the cancer has spread beyond the kidney. He highlights that while the majority of patients require therapy, a small subset may undergo observation with regular CT scans.

Download Resource Guide

See More from START HERE Renal Cell Carcinoma (RCC)

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Diagnosed with Renal Cell Carcinoma? Start Here

 Exploring Renal Cell Carcinoma Research | Expert Insights on Immunotherapy and Targeted Therapy

Exploring Renal Cell Carcinoma Research | Expert Insights on Immunotherapy and Targeted Therapy

 Renal Cell Carcinoma Clinical Trials | A Deep Dive into the Latest Advancements

Renal Cell Carcinoma Clinical Trials | A Deep Dive into the Latest Advancements

Transcript: 

Lisa Hatfield:

Another patient asking how is advanced renal cell carcinoma managed, and what is considered the standard of care for managing that?

Dr. Moshe Ornstein:

So when we talk about the management of advanced kidney cancer, when I hear advanced, I’m thinking about cancer that has spread beyond the kidney. So there are spots in the lungs, maybe there are spots in the liver or the bones, cancer that’s going to require therapy. I do want to highlight that there is a subset of patients in my practice, maybe 10 percent of patients who have advanced kidney cancer, and we’re actually just watching them with CT scans.

We actually don’t treat them, we just keep watching. That’s a minority. But it is important to know because if someone’s doctor tells them that we’re just going to watch it, it’s not necessarily a crazy thing. So to keep that in mind that there is a subset of patients, small percentage, but it’s a real percentage, where even though their kidney cancer is “metastatic,” it’s just going to be watched with careful CT scans, let’s say, every three to four months.

For the patient who is going to get treatment, which is the overwhelming number of patients, those patients are generally, when I say generally, I say in my practice, probably 95 percent of these patients are going to get an immunotherapy-based combination as their first line of treatment. Immunotherapy has different names in the literature. You might see immunotherapy, you might see checkpoint inhibitors. But what these are doing is they’re “releasing the brakes” on the body’s own immune system to attack the cancer. So the immunotherapy is either given in combination with another immunotherapy.

The only such combination we currently have is something called ipilimumab and nivolumab. And then some patients will get a combination of immunotherapy plus a targeted therapy. Targeted therapy is generally a therapy that inhibits the vasculature leading to the tumor. The way I describe it to patients is cutting off the blood supply to the tumor. So patients will either get, again, immunotherapy plus immunotherapy or an immunotherapy plus a targeted therapy. In this kind of short question-and-answer session, it’s hard to describe which patient gets what, but just as a broad overview, important to understand the big picture, so when patients and families are talking to the oncologist, to have an understanding of the general treatment paradigms.

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Exploring Renal Cell Carcinoma Research: Expert Insights on Immunotherapy and Targeted Therapy

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Exploring Renal Cell Carcinoma Research: Expert Insights on Immunotherapy and Targeted Therapy from Patient Empowerment Network on Vimeo.

What’s important in renal cell carcinoma research news? Expert Dr. Moshe Ornstein from Cleveland Clinic shares an overview of research updates on immunotherapy, targeted therapy, and combination therapies.

Download Resource Guide

See More from START HERE Renal Cell Carcinoma (RCC)

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Expert Insights into Kidney Cancer Risk Factors and Genetic Testing

Transcript: 

Lisa Hatfield:

Dr. Ornstein, can you speak to the latest news in renal cell carcinoma?

Dr. Moshe Ornstein:

So just by way of a 30,000 foot view, when it comes to renal cell carcinoma, approximately two-thirds of patients are diagnosed when the cancer is in a localized stage, where the cancer is treated with curative intent, generally with surgery. For patients who present with metastatic kidney cancer, in other words, kidney cancer that has spread beyond the kidney, or for patients who had their kidney removed and then developed a recurrence or the cancer had come back to the lungs or the bones or anywhere beyond the kidney, those patients are treated with what’s called systemic therapy. Those are medicines that really cover head to toe, not a specific area, but head to toe.

And when we think about treatment options in kidney cancer, there are two main treatment options. One is immunotherapy. Immunotherapy is generally what’s called checkpoint inhibitors. And these are therapies that “release the brakes” on the immune system, and allow the body’s immune system to be activated to target the cancer.

And the other type of medicine is called targeted therapies. And these for the most part, are vascular targeted therapies, and the way I describe it is they shrink the blood supply to the tumors. So again, you have those tumors that are diagnosed at a local stage. You have those tumors that are metastatic or advanced beyond the kidney. And the main treatment paradigms have to do with immunotherapy and targeted therapy.

So we just had the ASCO GU meeting, and I just want to describe the updates and how they fit into sort of the overall treatment paradigms across the different treatment sections, in other words, localized and metastatic. So for a patient who presents and comes in with just a kidney mass, that’s a kidney cancer, generally that patient’s going to be treated with surgery. In general, there’s no rule for therapy before surgery. For many years, for that patient who had their kidney cancer removed from the kidney, either part of the kidney or the whole kidney removed, we really didn’t know what to do with those patients, and the standard of care was just to watch those patients.

And we’ll get into a discussion about what watching the patient means. But one of the updates from the recent meetings has been that for patients who have their kidney removed because of kidney cancer, there is now a rule in some patients, this has to be a discussion with the doctor, to use immunotherapy to help prevent or delay the cancer from coming back. It’s a personal discussion.

We have a lot of data to support the use of a medicine called pembrolizumab (Keytruda), which is an immunotherapy that patients would get for a year after their kidney surgery. So that’s really the big recent update in the localized kidney cancer world, where the kidney cancer has been removed by surgery, and there’s now a treatment option, a year of immunotherapy after surgery for the right patient. So now, we move to the metastatic patient.

So again, the patient who has metastatic disease, either comes in with metastatic disease upfront, meaning the kidney’s there, the tumor’s in the kidney, and there’s advanced disease. And the other type is the patient who had their kidney removed a year ago, two years ago, sometimes five years ago, and now shows up with new spots in the lungs or the bones or elsewhere in the body. And that is metastatic or advanced kidney cancer.

So by and large, the overwhelming majority, and in my clinical practice, 95 percent of these patients are going to get an immunotherapy-based regimen as the first treatment for advanced kidney cancer. And there are different types of immunotherapy-based regimens. There’s an immunotherapy in combination with immunotherapy, and that’s called ipilimumab (Yervoy) and nivolumab (Opdivo), so double immunotherapy, or an immunotherapy plus a targeted therapy.

Lisa, we spoke about the targeted therapy, cutting the blood supply. So in addition to getting two immunotherapies, some patients won’t get two immunotherapies, they’ll get one immunotherapy in combination with a targeted therapy. And those combinations include axitinib (Inlyta) and pembrolizumab, lenvatinib (Lenvima) and pembrolizumab and cabozantinib (Cabometyx) and nivolumab as the primary combination treatments for the first line of therapy for metastatic kidney cancer.

And the real updates from the recent meetings in this setting is just that with additional follow-up, in other words, we’ve seen follow-up at two years after the trial started, three years, four years, now five years, we’re seeing that there’s a subset of patients that continue to benefit with this combination years down the road. So, encouraging for patients. Again, it’s not every patient, different patients need different things, but just the knowledge that we have long-term follow-up data for patients who have gotten an immunotherapy-based combination for the front-line treatment for their advanced kidney cancer.

And the last update I want to touch on is once we move beyond that first line of immunotherapy-based combinations, we really don’t know exactly what to do beyond that. Meaning, if somebody got an immunotherapy-based combination, and then the kidney cancer got worse, what do we give next? And generally, we’re giving more of these vascular inhibitors, these targeted therapies. And the latest advancement in this area, in the refractory setting, in other words post immunotherapy-based combination is the introduction of a new medicine called belzutifan (Welireg), which is not a classic vascular inhibitor, but is something called the HIF-2α inhibitor.

It’s a very well-tolerated therapy in many of the patients. And it does have activity in the right patient. And it’s now FDA-approved relatively recently for patients who have already had an immunotherapy-based combination. So that’s kind of the major update. The post-surgery treatment with immunotherapy, long-term data for immunotherapy-based combinations in the metastatic setting, and a novel therapy, a new mechanism of action with a pill with a therapy called belzutifan for patients whose kidney cancer is getting worse despite standard treatments upfront.

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Kidney Cancer Patient Expert Q&A: Dr. Moshe Ornstein

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Kidney Cancer Patient Expert Q&A: Dr. Moshe Ornstein from Patient Empowerment Network on Vimeo.

START HERE bridges the expert and patient voice, enabling patients facing a kidney cancer diagnosis to feel comfortable asking precise questions of their healthcare team.

In this program, Dr. Moshe Ornstein offers invaluable insights into renal cell carcinoma (RCC), equipping newly diagnosed patients with essential information on treatment priorities, as well as strategies for managing progression and recurrence.

Download Resource Guide

See More from START HERE Renal Cell Carcinoma (RCC)

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Exploring Renal Cell Carcinoma Research | Expert Insights on Immunotherapy and Targeted Therapy

Exploring Renal Cell Carcinoma Research | Expert Insights on Immunotherapy and Targeted Therapy

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Renal Cell Carcinoma Clinical Trials | A Deep Dive into the Latest Advancements

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Diagnosed with Renal Cell Carcinoma? Start Here

Transcript: 

Lisa Hatfield:

Hello and welcome. My name is Lisa Hatfield, your host for this Patient Empowerment Network START HERE program, where we bridge the expert and patient voice to enable you and me to feel comfortable asking questions for our healthcare team. The world is complicated, but understanding your kidney cancer doesn’t have to be. The goal of this program is to create actionable pathways for getting the most out of treatment and survivorship. 

Joining me today is Dr. Moshe Ornstein. Dr. Ornstein is a respected kidney cancer physician and researcher from Cleveland Clinic. Dr. Ornstein’s clinical practice and research are focused on cancers of the genitourinary system, specifically kidney, bladder, and prostate cancer. He has published multiple research articles and presented his research at a variety of national medical meetings. He’s actively involved in multiple clinical trials. Dr. Ornstein, it’s such a pleasure having you today, and thank you for joining us. 

Dr. Moshe Ornstein:

Thanks for having me, Lisa. Pleasure to be here.

Lisa Hatfield:

So before we dive into today’s discussion, please take a moment to download the program resource guide using the QR code. This guide contains pertinent information to guide you both before and after the program. In this program, we’ll provide you with a comprehensive update on the latest kidney cancer news, and its implications for you and your family. Following that, we’ll launch into questions we have received from you.

So let’s start here. Dr. Ornstein, the treatment landscape of renal cell carcinoma, also known as kidney cancer, has evolved significantly over the past three decades, leading to improved therapeutic options and prolonged survival. That said, we also recognize that there are unmet needs to improve outcomes in kidney cancer. Today, we are privileged to have your expertise to help us decipher these developments and shed light on the advancements shaping the landscape of kidney cancer care. Dr. Ornstein, can you speak to the latest news in renal cell carcinoma?

Dr. Moshe Ornstein:

Sure, Lisa. It’s a great question. But before I start with the most recent updates and the latest news, I just want to clarify something. I think for you, Lisa, as you say the words kidney cancer and renal cell carcinoma, it’s indeed a mouthful. And for our patients, it can be very confusing as they sometimes hear kidney cancer, they sometimes hear renal cell carcinoma, they sometimes hear RCC, and it can be really hard to digest and understand what their diagnosis is, or if they see a presentation or a talk on kidney cancer, what that means.

So kidney cancer just means any cancer that arises in the kidney. There’s lots of different types of kidney cancer. For the purposes of today’s discussion, we’re really talking about renal cell carcinoma or RCC, which is the most common type of kidney cancer. And within RCC, the most common subtype is clear cell renal cell carcinoma.

So today, when you hear us talk about kidney cancer, RCC, renal cell carcinoma, clear cell RCC, just know that we’re referring to the most common type of kidney cancer. But it is a really important thing to talk to your doctors about, and for patients to talk, and their families to talk to physicians about to understand the subtype. We’ll use colloquially kidney cancer and RCC for today’s discussion. So just by way of a 30,000 foot view, when it comes to renal cell carcinoma, approximately two-thirds of patients are diagnosed when the cancer is in a localized stage, where the cancer is treated with curative intent, generally with surgery.

For patients who present with metastatic kidney cancer,  in other words, kidney cancer that has spread beyond the kidney, or for patients who had their kidney removed and then developed a recurrence or the cancer had come back to the lungs or the bones or anywhere beyond the kidney, those patients are treated with what’s called systemic therapy. Those are medicines that really cover head to toe, not a specific area, but head to toe.

And when we think about treatment options in kidney cancer, there are two main treatment options. One is immunotherapy. Immunotherapy is generally what’s called checkpoint inhibitors. And these are therapies that “release the brakes” on the immune system, and allow the body’s immune system to be activated to target the cancer. And the other type of medicine is called targeted therapies. And these for the most part, are vascular targeted therapies, and the way I describe it is they shrink the blood supply to the tumors. So again, you have those tumors that are diagnosed at a local stage. You have those tumors that are metastatic or advanced beyond the kidney. And the main treatment paradigms have to do with immunotherapy and targeted therapy.

So we just had the ASCO GU meeting, and I just want to describe the updates and how they fit into sort of the overall treatment paradigms across the different treatment sections, in other words, localized and metastatic. So for a patient who presents and comes in with just a kidney mass, that’s a kidney cancer, generally that patient’s going to be treated with surgery.

In general, there’s no rule for therapy before surgery. For many years, for that patient who had their kidney cancer removed from the kidney, either part of the kidney or the whole kidney removed, we really didn’t know what to do with those patients, and the standard of care was just to watch those patients. And we’ll get into a discussion about what watching the patient means. But one of the updates from the recent meetings has been that for patients who have their kidney removed because of kidney cancer, there is now a rule in some patients, this has to be a discussion with the doctor, to use immunotherapy to help prevent or delay the cancer from coming back. It’s a personal discussion.

We have a lot of data to support the use of a medicine called pembrolizumab (Keytruda), which is an immunotherapy that patients would get for a year after their kidney surgery. So that’s really the big recent update in the localized kidney cancer world, where the kidney cancer has been removed by surgery, and there’s now a treatment option, a year of immunotherapy after surgery for the right patient. So now, we move to the metastatic patient.

So again, the patient who has metastatic disease, either comes in with metastatic disease upfront, meaning the kidney’s there, the tumor’s in the kidney, and there’s advanced disease. And the other type is the patient who had their kidney removed a year ago, two years ago, sometimes five years ago, and now shows up with new spots in the lungs or the bones or elsewhere in the body. And that is metastatic or advanced kidney cancer.

So by in large, the overwhelming majority, and in my clinical practice, 95 percent of these patients are going to get an immunotherapy-based regimen as the first treatment for advanced kidney cancer. And there are different types of immunotherapy-based regimens. There’s an immunotherapy in combination with immunotherapy, and that’s called ipilimumab (Yervoy) and nivolumab (Opdivo), so double immunotherapy, or an immunotherapy plus a targeted therapy.

Lisa, we spoke about the targeted therapy cutting the blood supply. So in addition to getting two immunotherapies, some patients won’t get two immunotherapies, they’ll get one immunotherapy in combination with a targeted therapy. And those combinations include axitinib (Inlyta) and pembrolizumab, lenvatinib (Lenvima) and pembrolizumab and cabozantinib (Cabometyx) and nivolumab as the primary combination treatments for the first line of therapy for metastatic kidney cancer.

And the real updates from the recent meetings in this setting is just that with additional follow-up, in other words, we’ve seen follow-up at two years after the trial started, three years, four years, now five years, we’re seeing that there’s a subset of patients that continue to benefit with this combination years down the road. So, encouraging for patients. Again, it’s not every patient, different patients need different things, but just the knowledge that we have long-term follow-up data for patients who have gotten an immunotherapy-based combination for the front-line treatment for their advanced kidney cancer.

And the last update I want to touch on is once we move beyond that first line of immunotherapy-based combinations, we really don’t know exactly what to do beyond that. Meaning, if somebody got an immunotherapy-based combination, and then the kidney cancer got worse, what do we give next? And generally, we’re giving more of these vascular inhibitors, these targeted therapies. And the latest advancement in this area, in the refractory setting, in other words post immunotherapy-based combination is the introduction of a new medicine called belzutifan (Welireg), which is not a classic vascular inhibitor, but is something called the HIF-2α inhibitor. It’s a very well-tolerated therapy in many of the patients. And it does have activity in the right patient. And it’s now FDA-approved relatively recently for patients who have already had an immunotherapy-based combination. So that’s kind of the major update.

The post-surgery treatment with immunotherapy, long-term data for immunotherapy-based combinations in the metastatic setting, and a novel therapy, a new mechanism of action with a pill with a therapy called belzutifan for patients whose kidney cancer is getting worse despite standard treatments upfront.

Lisa Hatfield:

Okay. Thank you so much for that outstanding overview. I had one follow-up question to that overview regarding clinical trials. So can you talk about any clinical trials you are excited about, both in the newly diagnosed setting or in the…I can’t remember what you called it, but the newly diagnosed setting and then the metastatic or recurring setting for kidney cancer, specific clinical trials, and then some of the medications that you had mentioned, are those FDA-approved right now or are those also in clinical…are most of those in clinical trials at the moment?

Dr. Moshe Ornstein:

A great question. I think what this goes to show is that, here I am talking to you, and sometimes some of the words are hard to understand. You can imagine a patient with a newly diagnosed kidney cancer, how confusing a lot of this can be. So I’m really happy we’re having this discussion. Everything I had mentioned up until this point is FDA-approved. And if I am to mention something that is not FDA-approved, I’ll make that caveat. And while we’re talking about non-FDA-approved therapies, let’s talk about some of those new and exciting clinical trials. The way I look at clinical trials, whether it’s in the treatment naive, so a patient who has a newly diagnosed cancer, or in a patient with refractory cancer, meaning cancer that has gotten worse despite some treatment already.

So I look at clinical trials, and I tend to divide them into two different main categories. And I think for patients, this sort of helps categorize them in a neat fashion. One, is looking at those trials that are investigating novel therapies. So we spoke about those immunotherapy checkpoint inhibitors, we spoke about those vascular endothelial growth factor inhibitors, in other words, targeted therapy. We spoke about this HIF-2α, those are all therapies that we understand the mechanism of action, we understand how they work.

So one kind of clinical trial is saying, what’s next? What’s down the road? What’s not an irregular immunotherapy? What’s not a regular targeted therapy? What’s not another HIF-2α drug? What are the novel therapies being investigated? So some of those trials that I’m interested in are trials that are looking at something called bispecifics. So these are singular drugs that sort of have two different targets. We’re looking at cellular therapies. We know these things called CAR-T cells work well in some of other cancers like lymphomas, but is there a rule for using this type of novel mechanism in kidney cancer?

Drugs looking at things called antibody drug conjugates, which again, these types of therapies are available in breast cancer, in bladder cancer, in other types of cancer, but not yet in kidney cancer. And that’s kind of the one category of novel mechanisms, novel agents. That’s one class of clinical trials. And the other class of clinical trials is really sort of optimizing the drugs we already have. So we know that as a general rule, giving immunotherapy plus targeted therapy is better than giving immunotherapy alone. But what about trials looking at giving two immunotherapies plus a targeted therapy?

We know that patients either get immunotherapy and immunotherapy, or an immunotherapy and a targeted therapy. What about if we gave two immunotherapies and a targeted therapy? Can three be better than two? So there are trials both in the front-line setting and in the refractory setting, looking at these novel therapies in the one bucket. And then there are also trials looking at these combinations and different ways of mixing and matching therapies that we already have to optimize patient outcomes?

Lisa Hatfield:

Great. Thank you for that description of clinical trials, too. That’s very helpful.

Okay. Now it’s that time where we answer questions that we’ve received from you. Please remember that this is not a substitute for your medical care. Always consult with your medical team. So, Dr. Ornstein, how do you explain a kidney cancer diagnosis to your newly diagnosed patients, and what are the priorities for those newly diagnosed patients?

Dr. Moshe Ornstein:

When I’m looking at a patient and their family with a newly diagnosed kidney cancer, I’m trying to think to myself a couple of things. Number one, how can I make it as easy to understand without withholding any information? How can I be as encouraging as possible, but at the same time without misleading the patient in terms of what’s to come? The way I break it down is into two main categories. There is the patient that presents with a localized kidney cancer.

So they came to the emergency room because they were having belly pain, and they were found to have a big mass growing in their kidney that is proven to be kidney cancer. And then there’s the patient who has advanced disease, metastatic disease that has spread beyond the kidney. Either they came in with metastatic disease, in other words, their kidneys in place, and they have cancer beyond the kidney. Or they already had a surgery a year or two ago, and now they come back, and the cancer has returned elsewhere in the body.

So for the patient that comes with a localized kidney cancer or kidney cancer limited to the kidney, I talk to them about what the diagnosis means in terms of what subtype of kidney cancer is it, meaning although most kidney cancers are clear cell renal cell carcinoma, there are other types of kidney cancer. And I want them to have a good handle in terms of what they have, both so that they know and they have all the information they need, but also because I understand that most patients, or at least many patients are going to look for more information elsewhere.  And without understanding the histology, the type of kidney cancer they actually have, I worry that they’re not going to get the right information. So I try to be very clear about what stage is it based on the scans or if they’re coming to see me after their surgery, what stage is it after the surgery?

What does it mean when something is a grade 1 versus a grade 2 versus a grade 3 in terms of what the cells look like under the microscope? That’s about the cancer. And then I talk to them about what we’re going to look for in the future. So again, we’re talking now about the patient with localized kidney cancer. I try to go through with them what the risk of that localized cancer is in terms of what the odds are of it coming back. We talk about what kind of surveillance, what kind of watching or monitoring of the cancer are we going to do, how often they’re going to get CAT scans.

So really try to give them the big picture about what cancer they have, what the outlook is, and what we’re going to do to keep a close eye on them. For the patient who has an advanced cancer, in some ways it’s similar. When I say advanced, I mean a cancer that has spread beyond the kidney that’s going to require therapy, immunotherapy, targeted therapy, a clinical trial, whatever it might be.

And again, super important for them to understand, is this a clear cell kidney cancer? Which is the most common? Is it a papillary kidney cancer? Is it something else? Then we talk about what the different treatment options are. What does the short term look like in terms of side effects? What does the short term look like in terms of getting the cancer under control? What does the long-term outlook look like? What are the possible long-term side effects? And then what are we going to do to monitor? Are we doing CAT scans? Are we doing MRIs? Are we doing imaging of their brain?

So again, first and foremost, what’s the nature of the diagnosis, what the treatment options are and likely side effects, what they need to look out for, and then how we as a medical team are going to monitor this over hopefully the long run.

Lisa Hatfield:

We have a patient asking if you can speak to a typical patient history associated with kidney cancer and is there a common factor, or I think that they’re asking is there a cause that you see frequently for kidney cancer?

Dr. Moshe Ornstein: 

Yeah, this is such a common question, Lisa, because patients want to know I have this cancer, what caused it? And generally, we just don’t know the answer to that. And I tell that to patients, it’s generally not something that somebody did that caused this kidney cancer. We do have known risk factors for kidney cancer, whether it’s obesity, smoking, high blood pressure, chronic kidney disease. So there are certain risk factors and associations, but it’s really difficult for a specific patient to be able to pinpoint this caused the kidney cancer. And I think it’s reassuring for patients to know that as a general rule, it’s not something that a patient did that caused the kidney cancer, and it’s not somebody’s fault that they have the kidney cancer.

Lisa Hatfield:

Okay. Thank you for that. What is hereditary renal cell carcinoma, and can you speak to the instance that you’ve seen in your practice? And third part of that question is, how can I protect my family?

Dr. Moshe Ornstein: 

It’s a loaded question, Lisa. And the truth is, you know, patients come in and many patients are not concerned about their well-being, they’re more concerned about their family, and they want to know, “Is this something that’s going to impact my children? Do my children need to be screened for kidney cancer at an earlier age or screened at all?” Because generally we don’t screen people for kidney cancer. 90+, maybe even as high as 95 percent of kidney cancer is what’s called sporadic.

In other words, it just comes out of the blue. I tell patients in some ways it’s just bad luck. It’s not anything they did. It’s not something that they got a gene from their mother or father that caused it, and it’s not something that they’re going to pass down to their children. There’s a very small percentage, maybe about 5 percent or so of kidney cancer that’s hereditary, that does have, you know, a genetic association. That is something that they can potentially pass down, and they may have received that gene from a parent.

It’s exceedingly rare. We think about VHL syndrome, we think about something called hereditary papillary, tuberous sclerosis complex, Birt-Hogg-Dubé, but the overwhelming majority are sporadic, not associated with any specific gene in terms of a gene passed down from parent to child. What I would say is when I start to think about an inherited kidney cancer, I’m thinking more about a very young patient who comes in with kidney cancer, where we don’t expect young patients generally to have kidney cancer, or a patient who shows up with kidney cancer that’s in both of the kidneys. So there are certain unusual features that would lead a doctor to think about a hereditary or genetically associated kidney cancer. But overwhelmingly, it’s sporadic. Children are not necessarily at a higher risk, don’t need to be screened. But for these small features we do in clinic, keep an eye out for that.

Lisa Hatfield:

Okay. Thank you for that. So when you have a patient who comes in with those more unusual presentations, do you recommend that they get some type of genetic testing done, so they can be aware for their family members that maybe they should be screened?

Dr. Moshe Ornstein:

Yeah, absolutely. I mean, if there’s an unusual feature, either a feature associated with tuberous sclerosis complex or something called Birt-Hogg-Dubé, or a young patient with advanced kidney cancer where we don’t expect it, or a patient that shows up with cancer in both of their kidneys and nowhere else, that will trigger us to send the patient to a genetic counselor to do a more thorough family history and talk about what they might be looking for in terms of genetic testing.

Lisa Hatfield:

Okay. Thank you. All right. Another person watching is asking, are there known occupational exposure risk factors for kidney cancer?

Dr. Moshe Ornstein:

This is a great question. You know, we know that with certain cancers, there are classic occupational exposure risks. People want to know, “If I worked in a coal mine, am I more likely to get this kind of kidney cancer? What if I’m a Vietnam veteran and I was exposed to Agent Orange, is this more likely?” Really difficult to find those associations.

I would say that probably the biggest ones are going to be, again, smoking, which I don’t know is so much an occupational hazard, although secondhand smoke is a real risk factor for cancers. Asbestos. So people who worked around a lot of asbestos, that can be a risk factor even for kidney cancer. I know we usually think about it as lung cancer mesothelioma, but definitely for kidney cancer as well in some studies. And then certain forms of gasoline exposure. I will tell you that I’ve taken care of a lot of patients and a lot of people who have kidney cancer and have never been able to isolate an occupational exposure. But looking in the literature, we’re really looking more for asbestos, certain gasoline, secondhand smoke, things like that.

Lisa Hatifeld:

Okay. Thank you. Another patient is asking if there are any specific diets or diet recommendations for kidney cancer patients, especially as they relate to managing side effects of the treatment.

Dr. Moshe Ornstein:

We get asked all the time. And my general answer that I give, and again it’s sort of tongue in cheek, is I tell the patients the same diet that I should be following is the diet that I would recommend to you. I tell patients it’s a well-balanced diet, the right amount of carbs, the right amount of protein, the right amount of Snicker bars. I’m not a get rid of all your sugar or don’t drink any caffeine person. So I think in terms of sort of being data-driven, I would say a generally well-balanced diet.

However, some of these therapies, particularly the TKIs can cause diarrhea. They can cause mouth sores, they might change how you feel. So even though a well-balanced diet is great, we also encourage patients and empower them and their families to follow a diet that’s going to sit well with them given the therapy that they’re on.

So I care about diet much less in the sense of how’s the diet going to affect the cancer and the long-term outcome, and much more in eat the foods that your body will accept. If your body is tolerating more pasta now than it did before, because that helps your gut and therefore you’re able to stay on therapy, wonderful. If you’ve become more of a protein person because that doesn’t instigate the diarrhea, also great. If you need food that has more salt or less spice because of how your mouth feels because of the therapy, then that’s what you need to eat. So really to pay attention to their own bodies and know that whatever they fall on in terms of their diet, again, taking the extremes out of the equation, it’s okay.

Lisa Hatifeld:

You’ve made a lot of patients happy with that response. Thank you.

Dr. Moshe Ornstein:

I think I may have made a lot of spouses unhappy. But again, I think it’s important to work as a team with the medical team and with family.

Lisa Hatifeld:

Great. Thank you. One last question. A patient is asking, “I’m newly diagnosed and my stage of kidney cancer is unclear as I wait for further review. What questions should I be asking my team? It’s very scary to know you have cancer, but unclear of how serious.”

Dr. Moshe Ornstein:

The first thing I would tell this patient is, it’s okay to be scared. And there’s no right or wrong way to feel while you’re waiting for the uncertainty to be settled. Some people have trouble sleeping, some people cry, some people shy away from interacting with their friends and loved ones. And there’s no right and wrong way to respond.

Once you’re comfortable, once a patient is comfortable saying, however I feel emotionally is okay, now we can talk about what you should be asking and what they should be asking. I always try to frame it as what am I looking for in the short term, and what am I looking for in the long term? And I think it’s important to ask the team, ‘Is this cancer something that we’re going to treat with a goal of eliminating it, or is this cancer something that I’m more likely to be on therapy for the long term?”

Again, a short-term question and a long-term question, and the team can give a general overview. I think it’s okay for a doctor to say, I don’t know, or I don’t know yet. I think if you have a doctor that says that, you’re probably very lucky because they’re comfortable being honest and telling you what they know and what they don’t know and what they’re going to do to get the information.

So I would say the questions to ask are, “What’s the next step in the investigations, whether it’s additional scans or additional biopsies? What are the chances that this is something that’s only going to be a short-term issue, and what are the chances that this is something that I’m looking at sort of a chronic condition for the long term?”

Lisa Hatifeld:  

Great. Thank you so much for that answer and showing compassion when you answered that question too. That’s a difficult diagnosis to receive. So thank you for that.

Dr. Ornstein, thank you so much for joining us today. We really appreciate your time and expertise. On behalf of all patients, including myself, a cancer patient, we’re so thankful for the opportunity to listen to your answers, for you to let us ask questions. So we appreciate your time. Thank you so much.

Dr. Moshe Ornstein:

Yep. Really my pleasure to be here and thanks so much for the opportunity.

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Collaborate | Being an Empowered Myeloma Patient

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Collaborate | Being an Empowered Myeloma Patient from Patient Empowerment Network on Vimeo.

When facing a myeloma diagnosis, how can you actively engage in your care? This animated video shares tips and advice for becoming empowered in your care, including understanding and setting treatment goals and educating yourself about myeloma.

See More from Collaborate Myeloma

Related Resources:

Questions and Considerations When Making Myeloma Treatment Decisions

 How to Thrive and Set Myeloma Treatment Goals

 What Should Myeloma Patients Ask About Developing Research

Transcript:

Bianca: 

Hi! I’m Bianca, and I’m a nurse specializing in myeloma. And this is Suzanne, who is living with myeloma.  

Together, we’re going to guide you through a series of videos to help you learn more about your myeloma and we’ll share tips to help you play an active role in your care and treatment decisions. 

Suzanne, I must say, you’re a great example of an empowered patient.  

Suzanne: 

Thank you, Bianca! It wasn’t always the case, but I’ve had some expert guidance from my healthcare team – including you!  

Bianca, what does it mean to be an empowered patient, exactly?  

Bianca: 

We can start with the World Health Organization’s definition of patient empowerment, which is: “a process through which people gain greater control over decisions and actions affecting their health.” 

Suzanne: 

That sounds right to me—as I’ve become more engaged in my care, I’ve definitely felt more confident and in control of decisions.  But when I was first diagnosed with myeloma, I was overwhelmed…and so was my family. Once we took proactive steps to learn more about my diagnosis and find the right healthcare team, I was able to access better overall care and to feel confident about my role in decisions.  

Bianca: 

Exactly, Suzanne. Let’s walk through some keys steps to becoming empowered, starting with diagnosis and education: 

  • When considering your care team, it’s a good idea to seek a second opinion with a myeloma specialist.  
  • A specialist can confirm your diagnosis, help you define your treatment goals, and provide peace of mind about your decisions.  
  • And, you should also educate yourself about your myeloma. If you’re watching this video on the Patient Empowerment Network website, you’ve already taken this step! 
  • In addition, there are a number of other advocacy groups specific to myeloma that provide a wealth of resources and support. You can ask your healthcare team for recommendations for learning about myeloma.  

Suzanne: 

That’s right, Bianca. And, it’s useful to access to your online patient portal, if available. You can use the portal to view medical records and test results and to communicate with your healthcare team.  

And as I’ve learned, it’s also important to actively participate in your care. This means speaking up and asking questions, which is not always easy. Bianca, what advice do you have for better communication with your healthcare team? 

Bianca: 

  • First, always prepare for appointments by writing down a list of questions in advance. You can use the Notes app on your smart phone or download one of the Office Visit Planners on the Patient Empowerment Network website to help you organize your thoughts.   
  • And, try to bring a friend or loved one to appointments to help you remember information and to take notes. 
  • Finally, it’s essential to realize that your doctor wants to know how you are doing and is there to help you. If you are hesitant about a treatment option or a side effect is bothering you, let someone on your healthcare team know. You can even send a message through your patient portal. 

Suzanne: 

That’s great advice, Bianca! I like the convenience of communicating through the patient portal, particularly if questions come up after my office visit. Remember, you have a voice in your care decisions, so speak up and ask questions.   

Bianca: 

That’s right! And, visit powerfulpatients.org/myeloma to view more videos with Suzanne and me.   

Thanks for joining us!  

Do Myeloma Treatment Advancements Create Care Challenges?

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Do Myeloma Treatment Advancements Create Care Challenges? from Patient Empowerment Network on Vimeo.

Are multiple myeloma treatment advancements creating challenges in patient care? Dr. Craig Cole from Karmanos Cancer Institute and advanced practice provider Charise Gleason discuss advancements in myeloma treatment options and combinations and navigating the rapid pace of new treatment information.

Download Resource Guide  |  Descargar guía de recursos

See More from EPEP Myeloma

Related Resources:

Best Practices: Crafting Myeloma Clinical Trial Conversations to Individual Patient Needs

 How Can Myeloma HCPs Overcome Unforeseen Practice Related Barriers?

 How Can Myeloma Nurses Start Clinical Trial Conversations at Start of Care?

Transcript:

Dr. Nicole Rochester:

We know that there has been rapid advancement in the myeloma sphere. Can you speak to how the introduction of novel drugs, treatment combinations and therapeutic modalities may pose some challenges for healthcare providers as they attempt to explain the sequence of treatment in relation to available clinical trials?

Dr. Craig Cole: 

Yeah, that’s a really good question, especially because so many things have been changing in myeloma, and such a rapid secession. It really, it’s been kind of not only an incredible transformative past 20 years in myeloma as we’ve moved away from using chemotherapy to using really targeted therapy, but really in the past five to 10 years, and us using immunotherapy and now T-cell directed therapy, it’s been transformative.

And it’s been very, very difficult for myeloma experts to kind of configure how these treatments are sequenced, and how the clinical trials are conducted. But basically, we have gone from using single drug therapies to using combination therapies for refractory patients to using multiple modalities and as upfront therapy for myeloma. Up until today, us using four-drug induction therapies with IMiDs proteasome inhibitors and now immunotherapy with anti-CD38 therapy being used upfront.

 Now, we have…we’re on the fact we are past the horizon of using T-cell directed therapy for relapsed/refractory myeloma. Those are now being put in combinations. And at the last meetings, we saw data in combining talquetamab with the bispecific antibody with pomalidomide (Pomalyst) having incredible response rates to 99 percent to a 100 percent. The combination of using daratumumab (Darzalex) with teclistamab (Tecvayli) at ASCO a couple of years ago having very, very, very high response rates for relapsed/refractory patients. And, of course, the combination of using two bispecific antibodies talquetamab (Talvey) and teclistamab together having, again, in these incredible response rates and for relapsed/refractory myeloma. So in very quick orders, we’re going to see those therapies moving further and further upfront, which is a huge benefit to patients.

But it can be kind of difficult to keep up with all the changes in myeloma, especially as we move from using these drugs as single agents, to using them in combination. And not only to speak to using some of the newer drugs like Mezigdomide in combination with daratumumab, having one of the CELMoDs having very, very high response rates. And so it’s exciting, but it does, it’s a challenge to discuss clinical trials with patients, because so many things have changed. We now have clinical trials across the spectrum of myeloma, using bispecifics as upfront and smoldering myeloma, which was at the last ASH meeting to using again, more novel therapies upfront and relapsed/refractory space and in the maintenance therapy space.

Dr. Nicole Rochester:

Well, that’s all very exciting, and I appreciate you sharing that because as you’ve said, there’s been a really kind of an explosion for lack of a better word, in the numbers of treatments that are available as well as increasing improvements and results. But as you shared, having all of these different modalities available can definitely cause some confusion even among those who do this every day. Do you have anything to add to that, Ms. Gleason?

Charise Gleason:

No, I think, well, I think Dr. Cole described that perfectly. It’s an exciting time, and also a challenging time, which just really brings you back to that team care approach to your patient, and how all of us need to work hard to keep up to date on the latest information. Dr. Cole mentioned quadruplet therapy, and we’ve got two clinical trials that have essentially told us if you add that quadruple therapy and add that antibody upfront, you drive that deeper response. So we change our practice probably sooner in the academic settings. And it’s really how do we get this out to other healthcare providers in our referral basis that send patients to us? And then also, how do we do maintenance? And I think Dr. Cole would agree most of us risk-stratify for that maintenance setting too, whether it’s one drug or multi-drug, depending on our patient’s disease.

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HCP Roundtable: Critical Clinical Trial Conversations in the Expanding Myeloma Landscape

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HCP Roundtable: Critical Clinical Trial Conversations in the Expanding Myeloma Landscape from Patient Empowerment Network on Vimeo.

Treatment options for multiple myeloma have increased substantially, mainly attributed to advancements in clinical trials. More than ever, HCPs having conversations about trials is critical. Given that underrepresented communities bear a disproportionate burden of multiple myeloma, it becomes imperative to shift this paradigm.

What are the optimal approaches to initiate these conversations early in the patient journey? How should HCPs effectively communicate information about clinical trials to patients and their families, including care partners? Myeloma experts Dr. Craig Cole and Charise Gleason lend their expertise, offering insights into best practices and guidance on the next steps to be taken.

Download Resource Guide  |  Descargar guía de recursos

See More from EPEP Myeloma

Related Resources:

Evolving Myeloma Clinical Trial Discussions Amid a Dynamic Treatment Landscape

 HCP Strategies for Navigating the Pre-trial Eligibility and Informed Consent Process

 HCP Roundtable: Best Practices for Talking About Clinical Trials With Myeloma Patients

Transcript:

Dr. Nicole Rochester:

Welcome to this Empowering Providers to Empower Patients Program. I’m Dr. Nicole Rochester, founder and CEO of Your GPS Doc. EPEP is a patient empowerment network program that serves as a secure space for healthcare providers to learn techniques for improving patient-physician communication and overcome practice barriers. In this

Myeloma roundtable, we are tackling critical clinical trial conversations in the expanding myeloma landscape. Some of the things we’ll discuss during this program include, how to explain the sequence of myeloma treatment and how clinical trials fit in. Healthcare provider to healthcare provider, recommended strategies for initiating clinical trial conversations early in the myeloma patient journey, and how to effectively mitigate and manage concerns regarding clinical trials through education, and continuously encourage patients and their care partners to ask questions.

It is my honor and privilege to be joined by Charise Gleason, vice President and Chief Advanced Practice Officer for Emory Healthcare, and adjunct faculty at the Nell Hodgson Woodruff School of Nursing at Emory University. Ms. Gleason leads the physician assistants and nurse practitioners across Emory Healthcare, overseeing clinical practice, quality, safety, and education. Thank you so much for joining us today, Ms. Gleason.

Charise Gleason:

Thank you so much for having me.

Dr. Nicole Rochester:

We’re also joined by Dr. Craig Cole, a board certified hematologist. Dr. Cole leads multiple clinical trials in multiple myeloma, and has worked extensively with patient advocacy groups to empower, educate, and bring equitable care to everyone. Thank you so much for joining us today, Dr. Cole.

Dr. Craig Cole:

Yeah, and thank you for the invitation.

Dr. Nicole Rochester:

While this conversation can be broadly beneficial, in this program, we are speaking to the unique needs of myeloma patients and families. So let’s get started with how to explain the sequence of myeloma treatment, and how available clinical trials fit in. So I’m going to start with you, Dr. Cole. We know that there has been rapid advancement in the myeloma sphere. Can you speak to how the introduction of novel drugs, treatment combinations and therapeutic modalities may pose some challenges for healthcare providers as they attempt to explain the sequence of treatment in relation to available clinical trials?

Dr. Craig Cole:

Yeah, that’s a really good question, especially because so many things have been changing in myeloma, and such a rapid secession. It really, it’s been kind of not only an incredible transformative past 20 years in myeloma as we’ve moved away from using chemotherapy to using really targeted therapy, but really in the past five to 10 years, and us using immunotherapy and now T-cell directed therapy, it’s been transformative.

And it’s been very, very difficult for myeloma experts to kind of configure how these treatments are sequenced, and how the clinical trials are conducted. But basically, we have gone from using single drug therapies to using combination therapies for refractory patients to using multiple modalities and as upfront therapy for myeloma. Up until today, us using four-drug induction therapies with IMiDs proteasome inhibitors and now immunotherapy with anti-CD38 therapy being used upfront.

Now, we have…we’re on the fact we are past the horizon of using T-cell directed therapy for relapsed/refractory myeloma. Those are now being put in combinations. And at the last meetings, we saw data in combining talquetamab with the bispecific antibody with pomalidomide (Pomalyst) having incredible response rates to 99 percent to a 100 percent. The combination of using daratumumab (Darzalex)with teclistamab (Tecvidli) at ASCO a couple of years ago having very, very, very high response rates for relapsed/refractory patients.

And, of course, the combination of using two bispecific antibodies talquetamab (Talvey) and teclistamab together having, again, in these incredible response rates and for relapse refractory myeloma. So in very quick orders, we’re going to see those therapies moving further and further upfront, which is a huge benefit to patients.

But it can be kind of difficult to keep up with all the changes in myeloma, especially as we move from using these drugs as single agents, to using them in combination. And not only to speak to using some of the newer drugs like Mezigdomide in combination with daratumumab, having one of the CELMoDs having very, very high response rates.

And so it’s exciting, but it does, it’s a challenge to discuss clinical trials with patients, because so many things have changed. We now have clinical trials across the spectrum of myeloma, using bispecifics as upfront and smoldering myeloma, which was at the last ASH meeting to using again, more novel therapies upfront and relapsed/refractory space and in the maintenance therapy space.

Dr. Nicole Rochester:

Well, that’s all very exciting, and I appreciate you sharing that because as you’ve said, there’s been a really kind of an explosion for lack of a better word, in the numbers of treatments that are available as well as increasing improvements and results. But as you shared, having all of these different modalities available can definitely cause some confusion even among those who do this every day. Do you have anything to add to that, Ms. Gleason?

Charise Gleason:

No, I think, well, I think Dr. Cole described that perfectly. It’s an exciting time, and also a challenging time, which just really brings you back to that team care approach to your patient, and how all of us need to work hard to keep up to date on the latest information. Dr. Cole mentioned quadruplet therapy, and we’ve got two clinical trials that have essentially told us. if you add that quadruple therapy and add that antibody upfront, you drive that deeper response.

So we change our practice probably sooner in the academic settings. And it’s really how do we get this out to other healthcare providers in our referral basis that send patients to us? And then also, how do we do maintenance? And I think Dr. Cole would agree most of us risk-stratify for that maintenance setting too, whether it’s one drug or multi-drug, depending on our patient’s disease.

Dr. Nicole Rochester:  

Wonderful. So certainly, this conversation alludes to the fact that the clinical trials regarding these medications are also increasingly complex. And so I’m going to go to you, Ms. Gleason, because we know that nurses and advanced practice providers provide understanding of these trials, including potential benefits and risks, and all of the things that are required as they consider participating in a trial. And then, as you all have both shared, there is some tailoring around the treatment with regard to the disease state, whether it’s relapsing, whether it’s refractory. So with that in mind, do you have any best practices around tailoring the trial conversation with regard to specific patient needs and situations?

Charise Gleason:

Well, I’ll start with, we bring that discussion with all of our patients about the potential of a clinical trial from the start. And so we’re all versed on that, we all look to what clinical trial could be available for this patient. So we’re used to having that conversation. So our teams all need to be educated, participate in our research meetings, so we are ready to discuss a trial on that. We sometimes get to spend more time with patients, and we get to know our patients. These are patients we see frequently, and so we can have those conversations.

You might have somebody who’s starting to have a biochemical progression. It’s not time to change their therapy yet, but we’re already thinking about what’s that next line of therapy. And so as we start to approach that with clinical trials and standard of care, and opening that dialogue, so it’s really that communication and that rapport and relationship you have with your patient, and that care partner. So an ongoing conversation about the different treatments that are available to them.

Dr. Nicole Rochester:

So we know that patients with myeloma are living longer lives based on everything that you all have shared, and with that comes a different set of options and challenges.  And you also have alluded to this team-based approach, Ms. Gleason, and we know that there’s a critical role that advanced practice providers play in the myeloma clinical trial setting. So I’d love for you to speak to that..the role that advanced practice providers play in myeloma clinical trials.

Charise Gleason:

Yeah, the advanced practice providers have started specializing like our physicians do, and we have that collaborative relationship, and we are part of that team approach to take care of our patients. So we’re identifying patients for potential clinical trials. Our scope of practice does vary a little bit from state to state. So in some cases, we can also enroll patients. If we’re not able to do that, though, we can already have discussed the trial, discussed side effects, presented them with the consent. So when they do meet with the physician, they’ve already seen a lot of that information, and then they can ask further questions with the physician.

I think the other big role that we play in the clinic setting is we see these patients, we see these patients for follow-up. So we’re doing a lot of management of the side effects, supportive care through the trials. We might be a little more available during the week, so if a patient’s here on another day, and they’ve got something going on, we’re answering those portal questions, and calling patients back and just really collaborating with our physicians and also the research team.

Dr. Nicole Rochester:

Dr. Cole, I’m going to turn the conversation back to you. As a physician, I know that often, there are some barriers just as part of our everyday practice that can hinder our work. And so I’d love for you to speak to any unforeseen or outdated practice related barriers that you feel may hinder your work, and the work of your colleagues specifically as it relates to myeloma trials. And then if you could also share some potential solutions to those barriers.

Dr. Craig Cole: 

Yes, super good question. I love this question. There are a lot that are out there that I…barriers that I hear providers talk about at other academic centers and in the community. One is that patients don’t want to go on clinical trials that they…and some of that is subconscious bias. Sometimes those are true, true bias. We know the FDA knows all the drug companies all, and I think every myeloma provider knows that there have been horrific disparities in the enrollment of patients in clinical trials based on race and age and ethnicity that the FDA looked at some of the data of trials that were going for FDA approval, and found that over the past 10 years, and that in those trials, that only 4 percent of the population of the trials were Black.

While in the United States, the number of Black myeloma patients is about 20 percent, over 20 percent of the myeloma population. So that’s a huge disparity. And what I hear is that while older patients and Black and Hispanic and Asian patients don’t want to go on clinical trials, and that’s not true. That’s been shown in multiple clinical trials that actually, the patients of different ethnicities and races actually are more likely to go on clinical trials than other racial groups. And so I think that it’s really important to keep that in mind that patients really…that really the ownership of getting a patient on a clinical trial is really on us to present the clinical trial option to them with every single conversation that we have.

 Some of the other barriers to clinical trials is, and Ms. Gleason had mentioned this, what they do at through the Emory system is that, well, the nurses and the other staff in the cancer center aren’t aware of the clinical trials, that when a patient goes through the clinic, they talk to more than just the provider. They talk to the treatment nurses, they talk to the intake people, they talked to the MAs, they talked to the scheduling people.

And there was a study that was done a few years ago in looking at patients who were given consent forms and declined clinical trials. And they found that a lot of patients declined clinical trials, well, because they said that, well, their doctor didn’t want them on the trial. And when they looked further into that, they saw that, well, the doctor offered them a clinical trial, but when they discussed the clinical trial with a nurse practitioner, when they discussed that trial with a treatment nurse or the MA or any of the other staff, when they didn’t know about the clinical trial, that was considered well, if you don’t know about the clinical trial, it must not be good for me. And then they withdrew from the trial.

So just like what they do, what Ms. Gleason had said, we have an all-in approach. We make sure that the treatment nurses, the MAs, the intake people know what we’re doing, know about our clinical trials, because that’s the fun part about what we do. The fun part is when we say, look, my goodness, this four-drug therapy had a 100 percent response rate. That shouldn’t be left in the physician compartment. It really shouldn’t be left in the provider compartment. That excitement should be clinic-wide. And when you have that all-in approach where everybody’s involved, everyone’s excited about clinical trials, it produces a culture of clinical trials that everybody wants to be part of, and the patients then can jump on that bus and feel comfortable participating in the trial.

Dr. Nicole Rochester:

Wow. Thank you for elucidating that. Both the issue of the health disparities that we see in clinical trials and the need to diversify that clinical trial patient population, some of those biases that exist, as well as really lifting up this idea of creating a culture of clinical trials. I love the language that you use for that and the idea that everyone throughout the entire clinical encounter needs to be both aware of, and excited about the clinical trials that are underway. So I appreciate that.

That leads us nicely into our next segment, which is really focusing on strategies for fellow healthcare providers for initiating clinical trial conversations early in the myeloma patient journey. So I’m going to go back to you, Ms. Gleason. We’ve been talking about this team-based approach. We know that nurses serve as key coordinators of care in the myeloma trial setting, as well as other members of the healthcare team. So from your perspective, what are some recommended strategies that you can share to encourage advanced practice providers, specifically how to initiate the clinical trial conversation at the outset of care?

Charise Gleason:  

First, we need to educate our advanced practice providers. So for new APPs coming into our system, part of their onboarding is the research mission, exposing them to the clinical trials, exposing them to what we have available. We have a weekly research meeting, I’m sure Dr. Cole has similar practices. And then our group has a separate meeting once a week, where we meet for two hours. The myeloma team, we have APPs who are off that day who call in for this meeting, because we go over our patients, we talk about what’s, clinical trials are available, that’s just how we practice and we think about that.

I would like to add to that, referring to a center early is so essential as well, and for us to start having that conversation. And I’ll talk a little bit to build on something Dr. Cole said with our patient population.  In Atlanta, in our database, 40 percent of our data is based on Black patients. And we enroll about 32% to 33% of Black patients on clinical trials. And what our work on trials has showed us too, if you give the same access to every patient, you have good outcomes and good outcomes for Black patients, if not better, than white patients. So we all need to be versed on that, whether you’re the research nurse, the clinic nurse, the physician, the advanced practice. And so we really do bring that approach to taking care of our patients.

And then, managing those side effects and having that open dialogue. So patients aren’t surprised by things. And I’ll use talquetamab for instance. We have a patient who is still on the original trial, who relapsed on a BCMA targeted therapy. Early on, these side effects were new to everybody. And she wanted to come off the trial month end. And it was that education piece and working with her, holding the drug, that now almost two years later, she’s still in remission, tolerating the drug. And so those are the stories and these are the experiences we have. We’re giving really good drugs on clinical trials and patients are responding well.

Dr. Nicole Rochester:

That’s an amazing success story. Thank you for sharing that. What about you, Dr. Cole, with regard to potential strategies for healthcare providers, what are some things that they can implement for initiating these clinical trial conversations early in the journey, particularly in the current environment?

Dr. Craig Cole: 

Yeah. And Ms. Gleason had mentioned this at kind of the top of our talk about having those conversations on day one. On day one of our patients coming in either as a second opinion, as a new diagnosis, as in whatever setting, we talk about…we have a list that we go through with the patient that talks about their stage or the disease, how we’re going to follow up. And there’s a line that I have to address, which is, clinical trials. So I mentioned our clinical trials, I mentioned on day one. And I think one strategy that other healthcare providers can take is that, even if you don’t have a clinical trial at that time, so right at this moment, we don’t have an upfront clinical trial.

We have one for maintenance therapy, post-transplant, but we don’t have an upfront trial. I mention that. I say that there are clinical trials that are available for your myeloma. Right now we don’t have a clinical trial for upfront myeloma, but we can refer you for a second opinion for an upfront trial if you’re interested or…and we have a clinical trial in maintenance. So that sets the groundwork that we’re going to talk about clinical trials on every visit. And that it doesn’t come as a surprise. Because the last thing you want to do is that someone is having a relapse and you say, “Oh, we’re going to talk about clinical trials today.”  Because then it’s like, “Oh my goodness, this is a desperation.” This is a desperation move, and it puts a lot of anxiety when you frame it, and we need to do this now as opposed to having on day one.

The second thing that I think really helps is getting patients involved in the myeloma community, especially with the support groups having not only the patients, but their care providers and families involved in the myeloma community. Because the myeloma communities through a lot of the support agencies like the IMF, the MMRF, the HealthTree, they have a very strong clinical trial culture. And when patients get involved, not only is that empowering to see other myeloma patients doing well, but to hear other myeloma patients talk about their experiences in clinical trials really, really helps. And I think the last thing that we use to help patients, go through clinical trials, is a couple of other things, is one, every time we talk about treatment options, if that is maintenance, if that is smoldering, if that is a relapsed/refractory therapy, we always put clinical trials in that conversation.

 Again, even if we don’t have that clinical trial at our institution, we talk about this as an option that we could refer you out to. And, and then we always talk about…I think one other little thing is that every visit that patients have, I somehow include some of the new things that are happening in myeloma. Now, my patients kind of expect it. They expect. They know when December and June is because when I see them after ASH and ASCO and sometimes they’re like asking, “So what’s new?” And once we get into that groove, they see, gosh. There are response rates that are off the charts with some of these new things. These patients are involved in clinical trials and the myeloma and multiple myeloma research is progressing at such a rate and things are getting better that patients want to be involved in it.

So we’re always talking about new things. Do I go into depth of detail with talquetamab and pomalidomide. I don’t go into depth of detail. And I say, where I was this clinical trials at our last ASH meeting that combined these two drugs for a relapsed/refractory myeloma, even patients who were refractory to some of the drugs you’re on now. And response rate was like 100 percent. And then when I talk about those clinical trials in the future, they’ll remember, man, that guy was talking, he’s all upset about these clinical trials. Maybe I want to be involved in them. So that’s kind of my few strategies that I use. 

Dr. Nicole Rochester:  

I love that. And what I really hear both of you saying is this idea of normalizing conversations about clinical trials and not introducing them as like a Hail Mary, so to speak, but really from the very beginning, letting patients and care partners know that this is a viable treatment option. So I think that is wonderful. And I can say like, your excitement is contagious for me, so I can only imagine how excited the patients that you work with feel.

So let’s move on to our final topic. How do we mitigate and manage concerns despite all these wonderful things that both of you have shared? I’m sure that patients and family members have concerns about myeloma clinical trials. And so I’ll start with you, Ms. Gleason. And as you hear concerns from patients and families over the years possibly related to fear of randomization, fear of getting the placebo, you all have mentioned some uneasiness about adverse effects. How do you effectively mitigate and manage these concerns with patients and their family members and care partners?

Charise Gleason:

Yeah, you just have to continue to have open communication. And if you’re, if a patient is accustomed to you mentioning clinical trials, then when you present one to them, right? They’re a little more open to it. But not everybody starts with us. And we get referrals in midway and different parts and different paths along the way. But patients we do hear, “I don’t want to get a placebo.” Or you’ll mention a clinical trial and somebody will say, “Am I ready for hospice?”

And it’s, you have to go back and start that education again that, no, you’re getting good treatment on this, a registry trial, for instance, you’re going to get standard of care treatment plus or minus something else, right? And so we really have to go back and educate that you are getting treatment. You’re going to be watched closer than any of our other patients actually.

You’ve got a whole team around you that’s talking about your trial and our patients every week. And so I think that our excitement and our being positive, we can get those patients to enroll on trials. I think something that makes me really happy is, we keep a list of every treatment line, and when you go through and it’s like standard of care, clinical trial, clinical trial, standard…it’s we’ve done the right thing then, right? Our patient has had full advantage of what’s available to them when we do that. 

Dr. Nicole Rochester:

What about you, Dr. Cole? Do you have anything to add with regard to managing the concerns that come up?

Dr. Craig Cole:

Yeah. The one thing that I tell patients, and I tell patients one-to-one, and when I do talks for some of the efficacy groups that I tell lots of patients that. That in 2024, myeloma trials are incredibly competitive. And the only, the best, best drugs, now float to the top as part of our clinical trial portfolio. There were days I remember begging companies for clinical trials saying, “Please, please think about myeloma.” And we were struggling.

Now, it is incredibly competitive, and that competition does a fantastic thing for patients because what we see in the clinical trial portfolio are drugs that are safer and safer and safer, and drugs that are more effective and more effective. When you go to these meetings and the expectation is that our response rate needs to be over 60%, then you know that the clinical trial mail you, that we work with them, is of a super high quality, which you really can’t say for a lot of other types of cancer.

So I tell patients that their fears that they have are absolutely justified. And one thing we teach the fellows, the residents and the medical students, is that you validate those concerns and you listen to those concerns and you don’t ignore it or blow through it. That you absolutely…those are the most important parts of that conversation. And if you don’t validate it, the patient says, “Well, I have a fear of randomization.” And you go, “Hmm, there’s no such thing.” Then that’s not validating. And that’s not even listening. That’s just moving on because you don’t have that concern, but you’re not bringing that, you’re not validating the patient’s concern. And so you have to be very, very careful in doing that because there are multiple studies that have shown those are the big concerns.

Also, bringing up the things that are facilitators for clinical trials, that if there is an opportunity for reimbursement for travel or reimbursement for hotel stays or reimbursement that we say that this trial has a reimbursement program, or if we say that use other things that help facilitate clinical trials like speaking to the family, not just speaking to a patient, but speaking to the caregiver and speaking to the extended family that that patient will have a conversation with are really important conversation because the more people that you can talk to, that’s part of that patient’s decision-making group, which can be very different from patient to patient based on their culture, the more likely you are to get a consensus among that decision-making group for the patient to go on a clinical trial.

Dr. Nicole Rochester:

Those are great tips. Thank you both so much. It’s time to wrap up our roundtable. I must say I have truly enjoyed this conversation as always. I have learned a lot. I’m sure that our audience has learned a lot. In closing, I’m going to go to each of you just to share maybe one takeaway that you’d like to leave with the audience. So I’ll start with you Dr. Cole, one takeaway.

Dr. Craig Cole: 

One takeaway. I actually thought about this, but I think that the biggest takeaway is, if I can squeeze two in.

Is that, is to remember that basically they’re all patients want to be involved in clinical trials and the ownership of having patients on clinical trials is really on us to really talk to them over a longitudinal period, to talk about clinical trials, to have them involved. To not look at a patient saying, “No, they don’t want to be on clinical trial.” That you really engage that patient to tell them about really the incredible progress that we’ve made, how competitive clinical trials are and how exciting it is to be part of that research environment. And that would be my one, my two sort of closing thoughts.

Dr. Nicole Rochester:

Thank you. And what about you, Ms. Gleason?

Charise Gleason:

Dr. Cole said it well. Please discuss this with your patient. Listen to them. Listen to their concerns. Don’t make decisions for them based on bias that maybe you’re bringing in. Don’t make decisions based on maybe it’s too far. Patients drive hours to go on clinical trials, and let’s give them the information and have that conversation.

Dr. Nicole Rochester:

Wonderful. Well, thanks again to both of you, and thank you all for tuning in to this Empowering Providers to Empower Patients program. I’m Dr. Nicole Rochester. Have an amazing day.

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Which Endometrial Cancer Clinical Trials Are Showing Promise?

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Which Endometrial Cancer Clinical Trials Are Showing Promise? from Patient Empowerment Network on Vimeo.

Which endometrial cancer clinical trials are showing encouraging results? Expert Dr. Emily Hinchcliff from Northwestern Medicine shares insight about novel therapies and combinations and advice for patients to be proactive in their care. 

[ACT]IVATION TIP

“…understand what clinical trials are available to your physician and to you at the place that you are currently getting treated. And then also understand more globally what other clinical trials might be out there. And that’s a great question to ask your physician.”

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Transcript:

Lisa:

What ongoing clinical trials are investigating novel therapies for advanced endometrial cancer? And can you provide some insights into any promising experimental treatments that have shown encouraging results in early phase trials?

Dr. Emily Hinchcliff: 

Absolutely. So I think that the use of immunotherapy in endometrial cancer has been a true game changer.  It has changed the landscape of how we think about treating this disease. I think the cutting edge now is to try and understand whether immunotherapy in combination with our more traditional chemotherapy, cytotoxic chemotherapies that basically kill cells rapidly dividing as compared to immunotherapy, which helps to kill cancer cells by using the immune system. So should we be using immunotherapy in addition to, or even instead of some of those traditional chemotherapy options? There are also many, many clinical trials that are investigating novel combinations and novel targeted agents, especially for the high-risk tumor subsets.

So endometrial cancer is a broad umbrella term for many different subtypes. And the higher risk subtypes often are those that are harder to treat with our standard therapies. And so many trials are specifically trying to target better options for these patients. I think that one trial that I will just highlight in addition to some of the immunotherapies are immune therapy combinations with what are called anti-angiogenics. So drugs that try to prevent the tumor from growing its own blood supply.

And then also immunotherapy in combination with another class of drugs called PARP inhibitors which are more commonly used in ovarian cancer but which in combination with immunotherapy may be a new avenue for effective treatment.

Lisa:

And do you have an activation tip for patients for that question?

 Dr. Emily Hinchcliff:  

Absolutely, so I think that my activation tip for patients surrounding novel therapies in endometrial cancer is to understand what clinical trials are available to your physician and to you at the place that you are currently getting treated. And then also understand more globally what other clinical trials might be out there.

And that’s a great question to ask your physician. I think that your physician can help you to decide is a standard of care therapy the right choice for you at this point in your treatment, in your cancer journey, or are you at a point where a clinical trial may be of benefit either because of the expected efficacy of the standard of care, or because of the potential benefits of that clinical trial, or even because of the side effect profiles of either of those options.

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What Can Follicular Lymphoma Patients Expect With Remission?

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What Can Follicular Lymphoma Patients Expect With Remission? from Patient Empowerment Network on Vimeo.

For follicular lymphoma patients, what can they expect to happen with remission? Expert Dr. Kami Maddocks from The Ohio State University explains how remission can vary among patients and shares an overview of potential treatments.

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Transcript:

Lisa Hatfield:

So one person says, “I’m currently in remission, what can I expect in my future? How long does remission last? And is treatment after remission the same as initial treatment?”

Dr. Kami Maddocks: 

So that is very dependent on what a patient receives. So there are different kind…of a lot of our treatments we look at median times. When patients have relapse, that can be a little bit different for single agent antibody therapy versus antibody in combination with chemoimmunotherapy for how long that treatment remission lasts. As far as we don’t typically reuse a treatment once we have used it before, although there is data in follicular lymphoma when patients receive single agent antibodies. So rituximab (Rituxan) alone, if they do well with that single agent immunotherapy for a long period, they may receive re-treatment with just that so long as they don’t have disease that requires more aggressive treatment.

Lisa Hatfield:

So is that more likely to happen then if a patient maybe wasn’t refractory to it, if they just stopped using it for some reason? Would that be more common for that to happen to go back on that same drug?

Dr. Kami Maddocks:

So with rituximab, we use it alone and in combination. So there are some patients that don’t necessarily have what we call a large tumor, and they don’t have a lot of lymph nodes, or they don’t have large lymph nodes, but they might be symptomatic from them, or the location might be problematic. And so once these lymph nodes get a certain size, they usually don’t have as good of a response to single agent antibody therapy. But there are patients who have small lymph nodes that aren’t as big but again are causing a problem that can get completely…you give a short course of the rituximab, and it can last for a very long time and then you would consider again using a short course of that rituximab.

The chemotherapies we have, we don’t reuse chemotherapy, for the most part. Some of that, for a while, there was bendamustine (Treanda) if patients got five, six, 10-year remissions out of it. Sometimes they would re-get that chemotherapy. But I think we’ve just seen so many newer therapies approved in the last five six years. Like the bispecifics, the EZH2 inhibitors, lenalidomide (Revlimid), CAR T, we had different PI3K inhibitors available for a while. And so I think it was just that you had the ability to offer a patient something that they never had before, and that is more appealing.

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Dr. Vinicius Ernani: Why Is It Important for You to Empower Patients?

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Dr. Vinicius Ernani: Why Is It Important for You to Empower Patients? from Patient Empowerment Network on Vimeo.

Why is it vital for small cell lung cancer patients  to be empowered by cancer experts? Expert Dr. Vinicius Ernani from the Mayo Clinic discusses the power of giving patients hope and the importance of clinical trials.

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Transcript:

Dr. Vinicius Ernani:

So I think it’s always important to give the patient hope. It doesn’t matter how aggressive the disease is. I think the patients, they need to have hope to go home and continue moving with their lives. So again, small cell, it’s an aggressive disease, yes, but it responds very well to treatment. And now, we know that immunotherapy is there, it improves survival. We know that about 10 percent, 12 percent of the…50 percent of the patients are alive at one year after they start treatment. If you look at two years, there’s about 20 percent of the patients are alive. And if we look at five years, there’s about 10 percent of the patients that are alive with small cell. So we are seeing some progress with immunotherapy.

And again, I encourage, this is a disease that responds very quickly. It’s going to make you feel better very soon. I think that any patient with extensive stage small cell lung cancer deserves to be treated. And again, there’s more clinical trials coming with the immunotherapy, with the antibody drug conjugates. So hopefully, we’re going to continue to move the needle in small cell lung cancer.

Extensive Stage Small Cell Lung Cancer | Empowering Symptom Management

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Extensive Stage Small Cell Lung Cancer | Empowering Symptom Management from Patient Empowerment Network on Vimeo.

How can extensive stage small cell lung cancer patients be empowered for symptom management? Expert Beth Sandy from Abramson Cancer Center discusses how she empowers patients and care partners, common treatment side effects, and advice for patients preparing for treatment.

[ACT]IVATION TIP

“…make sure before you leave the office or on the day you’re coming for chemotherapy that you have all your questions answered, that you feel pretty confident in what side effects you may experience. I am a proponent of writing down your questions.”

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Transcript:

Lisa Hatfield:

Beth, extensive stage small cell lung cancer and its associated treatments often come with challenging symptoms. How do you prioritize the patient education to empower both your patients and their care partners in recognizing and managing these symptoms at home?

Beth Sandy:

Yeah. So the treatments that we have are predominantly chemotherapy. We also can use immunotherapy, and these have a whole host of different side effects. Some patients may be dealing with just symptoms of the disease like shortness of breath or cough, but then when you add in the chemotherapy, it’s going to add a whole host of other side effects. I think there are a few important things to note here. Number one, know the names of the drugs that you’re getting, and at my institution, we will print them out for you with an  education sheet. So we like to give printed materials, because it’s hard to remember everything we say and not everybody’s going to sit there and take notes and write it down, so we give printed materials. I think that’s important. And then understanding the schedule.

So typically the first-line treatment that we use for this is three days in a row. It’s given once every three weeks. So you’re not just coming in one day. You actually have to come in three days in a row, and most cancer centers aren’t open on the weekend, so you would often have to be preparing to start this regimen either on Monday, Tuesday, or Wednesday.

So just think about that. We rarely start these regimens on a Thursday or Friday, because we want that consecutive three days in a row. There are scheduling issues that come into play here. And then the side effects, so we can predict really well what the side effects actually are going to be. I often can’t predict a lot of things with cancer, but side effects of chemotherapy are fairly predictable, and truthfully, most patients are going to lose their hair with this treatment. It grows back. So don’t worry. It grows back, but in the beginning, hair loss is something that may happen, so we need to tell patients that. No one wants to be at home, and all of a sudden all your hair falls out and you didn’t know that.

And then there’s chemotherapy side effects, things like lowering of blood counts, nausea. What I do want to say as I’ve been doing this for 20 years, our supportive care medications for preventing and treating nausea are so much better now. So it’s nothing like it was 20 years ago, and 30 years ago. When I started as a nurse, we didn’t have good medications then. We’ve really good medications now. So nausea tends to not be as big of an issue as what you may have experienced with a family member in the past, so that usually we can prevent pretty well.

But talking about the lowering of blood count is a big issue that it can put you at risk for infection, you may need blood transfusions. These are things that you have to talk about. So just make sure you have a pretty good understanding of that. The other thing we can predict is fatigue. So most patients are going to get fatigue, and usually it will be in the first week of treatment, but it won’t last the entire three weeks between the treatments.

So my activation tip here for this would be to make sure before you leave the office or on the day you’re coming for chemotherapy that you have all your questions answered, that you feel pretty confident in what side effects you may experience. I am a proponent of writing down your questions and bringing them in and I like when patients do that because then I can answer them, because otherwise I feel sometimes like did I answer everything? Do I forget anything that’s important to you? What may be important to you may not be as important to another patient? So write down your questions and make sure you have all of them answered before you leave especially when it comes to chemotherapy side effects.

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Understanding Small Cell Lung Cancer Research News and Future Treatments

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Understanding Small Cell Lung Cancer Research News and Future Treatments from Patient Empowerment Network on Vimeo.

What do small cell lung cancer (SCLC) treatment and the future of treatment look like? Expert Dr. Vinicius Ernani from the Mayo Clinic discusses SCLC treatment progress and small cell lung cancer clinical trials including the DeLLphi trial.

[ACT]IVATION TIP

“I think stay tuned. This tarlatamab might become, down the road, a new standard of care for our patients.”

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Transcript:

Lisa Hatfield:

And, Dr. Ernani, can you please explain research advancements in immuno-oncology and what this means for extensive-stage small cell lung cancer patients? And how do you envision the treatment landscape evolving over the next five to 10 years? 

Dr. Vinicius Ernani:

Yes. So over the last 30 years, we’ve had multiple Phase II, Phase III trials and, unfortunately, we were not able to move the needle in small cell lung cancer. However, over the last few years with the advancement of immunotherapy and incorporating immunotherapy to the standard carboplatin (Paraplatin) and etoposide (Toposar), we were able to finally make some progress in small cell lung cancer.

So now we know that the standard of care is to give chemotherapy plus immunotherapy, and we have at least three to four randomized Phase III trials showing the benefit of adding immunotherapy to chemotherapy. And I think this is a very exciting time for small cell. We are seeing at least over the last couple of meetings, over the last year, I’ve been seeing at least two promising drugs.

 One is tarlatamab that was the Phase II studies called the DeLLphi trial, was recently presented at ESMO. And there’s also an antibody drug conjugate that has also been very promising in small cell. So we’ll see how these studies are going to play out, especially the antibody drug conjugate, that’s still a Phase I study. So it’s a little bit early, but encouraging response rates. And the tarlatamab, which is a BiTE, and what I mean by BiTE, is a bi T-cell specific engager. I think it’s probably going to be soon approved by the FDA, and I think it’s going to change the standard of care in small cell again.

 Lisa Hatfield:

Dr. Ernani, with regard to the DeLLphi trial, can you explain who that is for and more specifically maybe what the hope is for patients and their families?

Dr. Vinicius Ernani:

Yeah. So the DeLLphi trial was a Phase II study. So usually we have three types of study, right? First, we have the Phase I study. Phase I studies are usually looking at how safe is a drug, but we are not looking too much of how active the drug is. We’re just making sure that the drug is safe to give to the patients. A Phase II study is a little bit bigger than a Phase I, and we are looking still at safety, if the treatment is safe, but we are trying to look a little bit more careful and how active this drug is.

In Phase III, those are usually big studies that randomizes 200, 300, 400 patients to the standard of care compared to the new drug. And that’s usually where we get the FDA approvals. So the DeLLphi-301 trial was a Phase II study that enrolled patients with heavily pretreated small cell lung cancer, extensive stage small cell lung cancer, to receive tarlatamab.

 And they had two doses. It was 10 milligrams and 100 milligrams. And it seems that the 10 milligram cohort, that actually the responses were even better than the 100 milligrams. So we saw the presentation at ESMO, it was actually published in one of the most respected…probably the most respected journal of medicine, the New England Journal of Medicine, and there was a response rate of 40 percent. So if we could give tarlatamab for patients that fail at least two lines of treatment, the chances of them responding to tarlatamab is about 40 percent.

And more importantly, I think that the duration of response was greater than six months. So what I mean by that, more than 50 percent of the patients that received this drug, they controlled the cancer for at least six months. So I think that’s a very positive about this drug.

Lisa Hatfield:

Great, thank you. And then one follow-up question I have about that. So if a patient were to come to you or go to their local oncologist and say, I’m really interested, I heard about this DeLLphi trial or any clinical trial, what is the advice you would give to that patient on how to access that clinical trial?

Dr. Vinicius Ernani:

Well, unfortunately, we don’t have at our institution, what I usually help my patients,  I go to clinicaltrials.gov and I type their cancer, and I go over with them on where the trials are open, and we try to find a facility or a cancer center that is close to where they live. So that’s what I usually do when I’m trying to find a clinical trial that I don’t have available in my site.

My activation tip for this question is, again, I think stay tuned. This tarlatamab might become, down the road, a new standard of care for our patients.

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Starting Time-Sensitive Small Cell Lung Cancer Treatment

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Starting Time-Sensitive Small Cell Lung Cancer Treatment from Patient Empowerment Network on Vimeo.

Some small cell lung cancer (SCLC) treatment calls for time-sensitive treatment. Expert Dr. Vinicius Ernani from the Mayo Clinic shares how he works with patients who will most likely have optimal results with prompt treatment and advice for patients considering rapid treatment.

[ACT]IVATION TIP

“…at least give the treatment a try. I think that you’re going to be positively surprised that you’re going to feel better within a few weeks.”

See More from [ACT]IVATED Small Cell Lung Cancer (SCLC)

Related Resources:

Understanding Small Cell Lung Cancer Research News and Future Treatments

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Key Resources for Small Cell Lung Cancer Patients and Families

Transcript:

Lisa Hatfield:

Dr. Ernani, for some small cell lung cancer patients, understanding treatment options is crucial and sometimes requires swift decisions. How do you work with your patients and families to make treatment decisions that might have to be made rather rapidly? 

Dr. Vinicius Ernani:

Well, small cell, as we know, it’s an aggressive type of cancer, it divides very quickly. And because of that the patients usually, they tend to be symptomatic, so they have a lot of symptoms at the time that we see them. And if this disease, if we left untreated and the patient has extensive stage, so the disease has spread, the prognosis can be poor.

That being said, because small cell divides very quickly, chemotherapy combined with immunotherapy can help these patients fairly quickly. We can see patients in a matter of two to three weeks, they report that their shortness of breath is much better, they’re feeling better, they’re more energetic, they can do more things at home.

So we can see a rapid positive response to treatment very quickly. So when I explain this to my patients, most of the patients, they have no hesitation to say, yeah, I want to proceed with chemotherapy. And I tell them chemotherapy will help you feel better and also help you survive longer. And we are very fortunate that sometimes the patients are able to live years, they’re able to meet some live, let’s say, like a wedding of a grandkid or important events in their life. So I always recommend them to at least give it a shot.

My activation tip for this question is at least give the treatment a try. I think that you’re going to be positively surprised that you’re going to feel better within a few weeks.

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