Tag Archive for: RET

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

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

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

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

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Transcript:

Katherine Banwell:

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

Dr. Isabel Preeshagul:

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

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

Katherine Banwell:

Why is an accurate diagnosis so important? 

Dr. Isabel Preeshagul:

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

Katherine Banwell:

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

Dr. Isabel Preeshagul:

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

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

Katherine Banwell:

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

Dr. Isabel Preeshagul:

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

Katherine Banwell:

What are common lung cancer biomarkers? 

Dr. Isabel Preeshagul:

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

What Biomarkers Affect Lung Cancer Care and Treatment?

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

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

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

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Transcript:

Katherine Banwell:

How does testing impact treatment and care? 

Dr. Grace Dy:

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

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

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

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

Katherine Banwell:

What are some of the mutations that are being targeted? 

Dr. Grace Dy:

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

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

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

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

What Guidelines Exist for Lung Cancer Genomic Biomarker Testing?

What Guidelines Exist for Lung Cancer Genomic Biomarker Testing? from Patient Empowerment Network on Vimeo.

What lung cancer guidelines are there for genomic biomarker testing? Expert Dr. Jessica Bauman from Fox Chase Cancer Center explains developments in genomic biomarker testing and mutations that are checked for in testing.

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Transcript:

Dr. Nicole Rochester: 

So I’m going to start with you, Dr. Bauman. Can you discuss existing guidelines for genomic biomarker testing for lung cancer?

Dr. Jessica Bauman

Sure. I’d be happy to. So genomic and biomarker testing in general has really been at the forefront of many conversations about lung cancer over the course of the last decade or longer, 20 years. Because it has really changed our approach to patient care and individualized the way that we treat and make decisions about patients with lung cancer. And so what this means, is for every single person who has a new diagnosis of lung cancer, essentially everybody is now recommended to have molecular testing on their individual tumor samples to help us decide what treatment decisions are the best for them. Now, it used to be that this was really only recommended for patients with a new diagnosis of metastatic lung cancer, but now we’re seeing this really influenced decision-making earlier on than the metastatic setting.

And so we now have treatment approaches that change based on molecular testing for early stage one cancer as well. And so, although it used to be more of a later stage, necessity, now we really…we really now need the information sooner than ever before. And when we say molecular testing, this is really looking at the individual tumor and what is potentially driving the cancer to grow. So to look for oncogenic drivers that change treatment. So I call this with my patients, I call this the alphabet soup. But this includes, EGFR mutations, ALK, ROS1, RET, HER2 as well as many others that influence the potential treatment options that we have for our patients.

Dr. Nicole Rochester: 

Awesome, thank you. That is a great overview. Do you have anything to add to that, Dr. Bazhenova?

Dr. Lyudmila Bazhenova:  

No, I think that was very nicely summarized. I think an important thing is that we have to test, we cannot guess. We have to know what our patients…what mutations our patients have, and then we have to know what to do with that. That’s kind of a second part of the question. 


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HCP Roundtable: Overcoming Lung Cancer Biomarker Testing Challenges

HCP Roundtable: Overcoming Lung Cancer Biomarker Testing Challenges from Patient Empowerment Network on Vimeo.

The lung cancer field continues to experience tremendous growth in precision medicine. Oncologists have more tools to treat lung cancer, but access and language remains a big factor in biomarker testing. Drs. Jessica Bauman and Lyudmila Bazhenova discuss current issues in NSCLC biomarker testing, insights on how providers can explain biomarker testing to their patients and their families, and how academic centers and community physicians can work together to overcome challenges in biomarker testing.

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Transcript:

Dr. Nicole Rochester: 

Welcome to the Empowering Providers to Empower Patients or EPEP program. I’m Dr. Nicole Rochester, a pediatrician and the founder of Your GPS Doc. In this unique program, we connect leading lung cancer expert voices to discuss enhancing physician patient communication and share decision making in lung cancer care. Some of the questions we’re going to talk about today include, what are the major successes and challenges around biomarker testing? How can experts in academic settings work with those in community settings to overcome challenges in biomarker testing? And also, what are the best practices for discussing and explaining biomarker testing to your lung cancer patients? 

Thank you. I’m thrilled to be joined today by noted lung cancer medical oncologist, Dr. Jessica Bauman from Fox Chase Cancer Center in Philadelphia, and Dr. Luda Bazhenova from UC San Diego Medical Center. Thank you both for joining us in today’s round table.

Dr. Jessica Bauman:

Thanks for having us.

Dr. Lyudmila Bazhenova:

My pleasure should be here as well.

Dr. Nicole Rochester:

Thankfully, research in lung cancer is ongoing and remains at a fast pace, but with that pace often comes challenges of keeping everyone up to date, providers included. So we have a lot to cover today. So I want to start by just providing a general overview of biomarker testing and lung cancer therapy. So I’m going to start with you, Dr. Bauman. Can you discuss some of the general guidelines for…sorry. So I’m going to start with you, Dr. Bauman. Can you discuss existing guidelines for genomic biomarker testing for lung cancer?

Dr. Jessica Bauman:

Sure. I’d be happy to. So genomic and biomarker testing in general has really been at the forefront of many conversations about lung cancer over the course of the last decade or longer, 20 years. Because it has really changed our approach to patient care and individualized the way that we treat and make decisions about patients with lung cancer. And so what this means, is for every single person who has a new diagnosis of lung cancer, essentially everybody is now recommended to have molecular testing on their individual tumor samples to help us decide what treatment decisions are the best for them. Now, it used to be that this was really only recommended for patients with a new diagnosis of metastatic lung cancer, but now we’re seeing this really influenced decision-making earlier on than the metastatic setting.

And so we now have treatment approaches that change based on molecular testing for early stage one cancer as well. And so, although it used to be more of a later stage, necessity, now we really…we really now need the information sooner than ever before. And when we say molecular testing, this is really looking at the individual tumor and what is potentially driving the cancer to grow. So to look for oncogenic drivers that change treatment. So I call this with my patients, I call this the alphabet soup. But this includes, EGFR mutations, ALK, ROS1, RET, HER2 as well as many others that influence the potential treatment options that we have for our patients.

Dr. Nicole Rochester:

Awesome, thank you. That is a great overview. Do you have anything to add to that, Dr. Bazhenova?

Dr. Lyudmila Bazhenova:  No, I think that was very nicely summarized. I think an important thing is that we have to test, we cannot guess. We have to know what our patients…what mutations our patients have, and then we have to know what to do with that. That’s kind of a second part of the question.

Dr. Nicole Rochester:

Wonderful. So it sounds like this is really kind of revolutionary in the sense that, like you said, we can now provide very individualized treatment for lung cancer patients. So I’d love for the two of you to talk about some of the successes in testing over the past decade for lung cancer patients. And we’ll start with you this time, Dr. Bazhenova.

Dr. Lyudmila Bazhenova:

I think our successes actually became our challenges. We have seen an explosion of targetable oncogenic drivers. If you look at the FDA approvals for oncogenic driven therapy, we have a first approval in 2004 and then there was kind of a silence for almost a decade. And then starting in 2014, every year we now have three or four drugs approved. And also those drugs are being approved for the same indication, but different companies. So I think it is very hard for a practicing oncologist who have diseases other than lung cancer to actually keep up with exploding information that they need to know. And I think that’s why I say our success is our challenge, our success is that we are now in lung cancer have 10 oncogenic drivers that we have treatment for.

Our challenge is to remember that there are 10 oncogenic drivers. It’s becoming even more complicated because if you take, for example, an EGFR story, we don’t just need to know that the patient has an EGFR mutation. We need to know what type of EGFR mutation we have, that patient has. And it is no longer three categories. Like even looking in atypical mutations, we now separate out so-called pack mutations, which are treated differently than anything else. So it’s difficult for a practicing physician, or mid-level practitioner to remember what even to do for lung cancer, but they have to do a breast cancer and colon cancer and everything else. So it is a challenge currently.

Dr. Nicole Rochester:

I appreciate you highlighting that. A lot of times it’s like a double-edged sword, right? What are your thoughts, Dr. Bauman, and in terms of the successes as well as some of the challenges?

Dr. Jessica Bauman:

So I absolutely echo what Dr. Bazhenova is saying in terms of the amazing successes, right? We now have for multiple different populations, we have an oral medication that can treat their cancer with the hope that it keeps that cancer under control for many, many months and for some people even years. And I think the challenge is absolutely keeping track of all of those different mutations and then what is actually targetable. And if you have, is it a mutation? Is it a fusion? Is it… What exactly is it that allows you to then use that targetable therapy? Is certainly one challenge. The other challenge is getting that information as soon as we can get it. So you can imagine, so somebody comes in to see me with a new diagnosis of metastatic lung cancer, right? Their biopsy was done say two weeks at a different hospital, and their first scan was done six weeks ago.

So now they’re already six weeks into the concern of a diagnosis of lung cancer, and they’re symptomatic and they come to see me and say, what am I going to do? And we have to get all of that information as fast as we can, because it completely changes the way we’re going to treat them. And so creating systems, in particular reflex testing systems such that this is sent immediately so that by the time they’re seeing me we already have this information is really important. But that, I think that is sort of at its infancy. At Fox Chase, we’ve worked on our sort of reflex system for a very long time. And it’s still, every time there’s a new approval, it seems like it changes slightly or there’s a new system that we have to think about it. But at the end of the day we also…one of the challenges is making sure that we streamline the processes in which we get this information in the best way we can because tissue can be limited.

There is a lot, making sure that you actually get adequate tissue sampling to be able to test for everything that you need to test for is really important. Then figuring out where to send the testing. Many academic centers have internal panels that they send for molecular testing, but there are so many different companies that advertise doing some kind of molecular testing. And so knowing which of those companies to consider using, what they’re offering, which ones offer RNA sequencing, for example, because that is a particularly important aspect, in addition to DNA sequencing that we need. And so sort of keeping track of all of that is particularly challenging. And then I think the last thing is, I think it’s the needing this information earlier and earlier in a diagnosis.

Dr. Jessica Bauman:

And so once upon a time, it really was the medical oncologist who could drive this and run the show because it was really, we needed it for somebody with metastatic disease, right? And we’re sort of the captains of the ship per se, when someone has a new diagnosis of metastatic disease. However, now there’s adjuvant therapy for patients who have EGFR mutations after a surgical resection. And so we need, the surgeons also need to really understand that we need this information. And they often are now getting these tests before a medical oncologist even sees the patients. And so it isn’t just medical oncology, it’s also now, it’s going into multiple different specialties who also need to understand what these mutations mean and what to do about them, and then how it influences therapies.

Dr. Nicole Rochester:

Wow, you all have really done such a great job highlighting both the successes and the challenges. And it’s a perfect segue into my next question because you just alluded to, Dr. Bauman, this idea of academic medical centers and the challenges that you all are facing in cancer centers. And we know that many patients are receiving their care in the community, and in fact, sometimes it’s this dichotomy between what happens in the academic setting and the community setting that can actually create and perpetuate disparities. So my next question really has to do with how can lung cancer experts in academic settings partner with, collaborate, work with those experts in the community settings to overcome some of these challenges that you all just talked about as it relates to biomarker testing? So I’ll start with you, Dr. Bauman.

Dr. Jessica Bauman:

So, that’s a million dollar question. I do think there are many opportunities of educational opportunities to continue to educate everybody in terms of lung cancer. I think lung cancer is a very common diagnosis. And so we know that many community providers absolutely deliver excellent lung cancer care. And so making sure that there are many opportunities for them to participate in, either citywide or nationwide educational opportunities for updates on lung cancer. We have in Philadelphia, we actually have an academic, sort of a multi-multidisciplinary, multi-institutional tumor board, thoracic tumor board that happens quarterly, which we invite community providers to to discuss some of the latest literature. Certainly our emails are always available, so we can always bring there, certainly we get many different questions that come in from other providers, but I’m sure we could do a better job. And I’m very curious to hear what Dr. Bazhenova thinks about this as well, because I think it is such a huge challenge.

Dr. Lyudmila Bazhenova:

I agree with you fully, and I think my two cents here is I think we have to recognize and accept that one size does not fit all in this situation. And whatever works for my institution is probably not going to work for a smaller community practice. But as long as we recognize that this needs to be done and each community practice can work with their stakeholders in the molecular testing pathway, like molecular pathologists, regular pathologists, surgeons. Each institution has power to establish their own internal pathways. Would it be what Dr. Bauman says, reflex testing, which is probably not going to be an option for a majority of the community setting because they do not have their own NGS. It’s going to be a sendout. Or like in our institutions, we don’t have a reflex molecular testing. It’s us medical oncologists who are ordering it, but we kind of get it on the backside.

We can get the patient in within 24, 48 hours from the consult was put in. And so that’s why we didn’t do the reflex testing, but as the reason we did it is because we sat down as a team and we decided this is what works for us. So I encouraged the community groups again, sitting down saying, okay, the task in hand is lung cancer patient has to have molecular testing at the time of the diagnosis. How are we going to get it and how are we going to make sure that we are not missing, you know, have some kind of internal QI, and make sure you know what your practice is doing rather than assuming that your practice is doing molecular testing for all the patients.

Dr. Nicole Rochester:

Thank you so much. Did you have something you wanted to add, Dr. Bauman?

Dr. Jessica Bauman:

Yeah, I was just going to say, and I think that so many things are happening before they ever see us, that includes a pulmonologist is going in and doing a biopsy, right? Or an interventional radiologist is getting a biopsy. So it has to start way upfront of the actual diagnosis because the, what you want to try to get to capture the information as soon as you can, right? So you don’t want to get just an FNA biopsy, for example, of a liver lesion knowing that three weeks later what you really need is a core biopsy, right? So it really, the path you do, it involves so many different stakeholders when you’re having conversations about how to streamline this for your own institution and practice.

Dr. Nicole Rochester:

So both of you have really touched on the challenges even among physician-to-physician communication and the fact that by virtue of the diagnosis and the treatment, there’s lots of different specialists involved, the timing of which can be very crucial. And so shifting to physician patient communication, which we know is fraught with even more challenges. Can you each share some examples from your own practice around improving physician patient communication that may serve as exemplary for providers that are watching this program? And we’ll start with you, Dr. Bazhenova.

Dr. Lyudmila Bazhenova:

I think it also has some challenges, because in the current environment of practicing medicine, we are, as physicians, we are pushed to see more patients, it’s all about productivity. So when you do that, something has to give. And a time that we can spend with the patient is limited. And I think it’s important, for myself, as a practice, I have the same, I call it spiel that I give to all my patients. It’s the same picture I write down when I speak and I give that paper to the patients. I’ve had, you know, created some preprinted things that I used to give to the patients. Don’t do it anymore. But I think that’s another thing, have some kind of information that is a patient level that I can give to the patients.

And I think we have to educate the patients as well, either by ourselves or using the platforms that we are exhibiting here, that is outside of our primary institutions. And to make sure that the patients are aware that each one of them who have a stage IV lung cancer, as well as early stage lung cancer needs to be tested for the molecular testing. And kind of put it also have the patient question the physician, did you do that? Was that test done? That’s one part of information.  And I think the second part is, we do have to do better in allowing our patients to get a faster access to us. And we kind of accept the fact that we are going to be working after hours. When the clinic is over, that’s where I’m going to go to my charts, and I’m going to answer my patient’s question.

It’s kind of an intrinsic, is the work of the physician. Hours is…unfortunately, doesn’t really count. There is no limit to that. So whatever it works, like having a nurse educator. We have in our institution, we have…we call her tissue coordinator, but she’s the person who can actually make sure that the tissue is done, she can also make sure that reports are sent to the patient and make sure that patient has ability to ask questions of somebody. And I think the EMR, electronic medical record, it’s kind of a love-hate relationship, I think, with all of us. But one thing that I find it made it much easier for me is to communicate with my patients using my chart and this ability to release the result to the patient by one click of a button, that saves time for me so I can spend that time to actually visit the patient and explain to the patient what needs to be done.

Dr. Nicole Rochster:

That is awesome, thank you. Do you have anything to add, Dr. Bauman?

Dr. Jessica Buaman:

In terms of challenges of discussions with patients?

Dr. Nicole Rochester:

Yeah, and best practices. So Dr. Bazhenova mentioned using portal, which I think is awesome, and really educating patients in a way that allows them to ask questions of their providers. Any other insights or tactics that you use?

Dr. Jessica Bauman:

Yes, yes, I agree that I think that this overall requires a lot of education, and especially when patients come in and they want to know tomorrow or yesterday, actually, what they’re going to get for treatment and what we’re going to start with. And so telling them that actually we still can’t decide for at least another week or two, that in of itself can be challenging. I think the other piece of this that’s always important is, in general, when we’re doing molecular and biomarker testing, we’re looking for changes in the tumor, we’re looking for what we call somatic mutations, but there is also the second concern where on rare occasion, issues with molecular testing can bring up issues with germline testing, meaning some abnormality that’s found that may impact their own familial risk for cancer, and so that of course requires a lot of thought and careful education as well, in addition to the treatment decision-making that we’re really ordering the test to decide upon.

Dr. Nicole Rochester:

Really good point. Because if there’s a familial aspect, like you said, that brings up an entirely another layer of discussion and worry and concern as well. Well, Dr. Bazhenova I know that you lead a weekly tumor board for lung cancer, and I’d love to learn more about some of the things that you can share that may be insightful for other lung cancer experts as a result of the tumor board.

Dr. Lyudmila Bazhenova:

At UC San Diego, we actually have two tumor boards where lung cancer patients can be presented, one is just a traditional multidisciplinary thoracic tumor board, which is attended by a medical oncologist surgeons, radiation oncologist, pathologist, interventional people, clinical trial coordinators. And I think this is not unique to UC San Diego. The multidisciplinary tumor boards are available in all major academic institutions. And I think lung cancer care is becoming more and more multi-disciplinary, especially with the new advances of new adjuvant to chemo immunotherapy and controversies we still have to this point in management of stage three disease. And I think what I find in a multidisciplinary tumor board…

Because I think what I want to build upon as Dr. Bauman statement that she said that times of an essence here, and I think the multi-d tumor board help us make medical decisions on the spot rather than me sending a patient to see a surgeon or sending a patient to see radiation oncologist and sending patients to see interventional radiologist, and then the IR is telling you, “Oh, we can’t do that biopsy, you gotta send it to the pulmonologist.” I think that actually streamlines the patient care. The second tumor board what we have, that maturity of the lung cancer patients actually don’t get presented there, it’s a molecular tumor board. And the reason why we don’t present majority of the lung cancer patients there because management of antigen-driven lung cancer is pretty straightforward.

I think only presentations I would ever make there if they have an unusual mutation that I can’t find any information about, then I need the help of our molecular pathologist, but it is a good avenue for those weird rare molecular abnormalities that I’ve seen in other malignancies and so that is another option. And there’s actually…many institutions have molecular tumor boards as well. We do open our tumor board not to all communities. So we are not as good as you, Dr. Bauman. So only one community practice can join us because they’re kind of part of us, so we don’t usually…we don’t have it open to the whole community, and I think as an academic institution, we probably should strive to have an open tumor boards where everybody can join and listen and present and that’s the most important.

Dr. Jessica Bauman:

I do want to say, we don’t..I must have misspoken, we definitely don’t include community practices. So I do think that that would be a fantastic offering in the sense of some of the… I don’t know that we could do that on a weekly basis, but consider something like on a monthly basis or even a quarterly basis of a true tumor board where people can present cases in real time from community practices.

Dr. Nicole Rochester:

Awesome, yeah, I think based on everything that you all have shared, that would definitely be an added benefit for sure. So circling back to communicating with patients, you all have already shared the challenges related to productivity and the limited time that we have with patients and some of the things that you have been able to institute. I wonder if either of you or both of you have any thoughts around unique things that you’ve implemented that have allowed you to really connect and communicate with your patients in spite of these time limitations. So I know we talked about using the portal, which is an amazing resource. Are there any unique things that you all have implemented in real time, like face-to-face, when communicating with patients?

Dr. Jessica Bauman:

So I would say we did a pilot study that has not been implemented full time, and really I think we’re still working on how to best implement something like this but we did a pilot study using sort of educational materials, and this whole sort of pathway and educational system in coordination with our nurse navigators, where you could send sort of a prescription to the patient of reading material or of educational material, as they’re going along. And so, with the idea that early on that one of those prescriptions would be more information about molecular testing and biomarker testing, decision making, all of those types of things.

We did a small pilot study to incorporate that, which on the surface is fantastic but it was surprisingly challenging to do, to actually implement. And I think that was…we were doing this, again, in collaboration with one of the researchers, the nurse researchers at our institution, and we hit more barriers than expected, because I think we all, as you say, we all want to educate, we all want to make sure that our patients understand and get the information that they need, but the practicality of doing that really successfully and in a streamlined way but that’s also consistent across providers across the institution, it’s a challenge.

Dr. Nicole Rochester:

Yeah, I can imagine. Are there a chance to extend the pilot or to maybe modify it based on what you all learn from the initial study?

Dr. Jessica Bauman:

I think that that’s… It’s certainly in discussion about how to best implement something like this. Part of that is… Again, sort of systems change. The role of the clinic nurse, the nurse navigators has changed a little bit and so even how we envision implementation is going to need to shift somewhat.

Dr. Nicole Rochester:

Wonderful. What about you, Dr. Bazhenova? Any pilot studies or any other maybe tips and tricks that you employ independently?

Dr. Lyudmila Bazhenova:

Yeah, we haven’t had any pilot studies but I think the more I think about it…so the challenge of discussing those molecular testing with the patients is the fact that majority of those molecular testing discussions happen in stage four patients and majority of those discussions happen during the first visit for a patient with stage four lung cancer where we just discussed that this is an incurable cancer with limited life expectancy. And then how much does our patient actually absorb anything else we said afterwards is still remain to be seen. And I actually have seen like when I talk to the patient because they are so understandably fixated on their prognosis and survival, because it’s going to affect their lives that after that my patient asked me a question that I know I’ve discussed it already because I have my spiel.

I tell the same thing to everybody. And I think now kind of thinking about it out loud after that, during that discussion and maybe we could set up another appointment with a nurse practitioner afterwards, that after the patient kind of already digested all that information, to go over again the management of the molecular abnormalities. And one thing I actually want to highlight and build upon something that Bauman said before, that in those patients we actually usually wait for the molecular testing to come back before we start their therapy. And it is much easier to just prescribe chemotherapy immunotherapy for those patients.

But then you’re going to run into issues of toxicity because if you gave immunotherapy before you give for example EGFR TKI and some ALK TKIs, you can actually going to run into toxicity and you can permanently prevent your patients from continue on tyrosine kinase inhibitors. And so that’s why this is an information that not all oncologists, especially those who practice in a tobacco belt where they don’t see a lot of oncogenic driven patients, they might not be aware of that. And I think how do we pass that information to the physicians, and also how do we pass that information to the patients that there is an easy way, but easy way in this situation is not the right way?

Dr. Nicole Rochester:

Wow, so many competing priorities. This has been a fascinating conversation. It’s time for us to wrap up but I really want to thank both of you for offering your insight and your expertise. And I’d love to get some closing thoughts. We’ve shared, you all have shared so much about the challenges, as well as the successes, you’ve offered some insight into some things that can probably be further developed in the future. So as we wrap up, I’ll start with you, Dr. Bauman, what are some closing thoughts that you would share with the providers that are watching this program?

Dr. Jessica Bauman:

I think I would again highlight just how imperative it is to create systems early on to identify how you’re going to get molecular testing on all of your lung cancer patients, and then have a good tracking system to make sure that it’s incorporated in your notes that you have potentially a database within your practice, so that you really are aware of the different molecular abnormalities that your patients have and then potential treatment options that they have later. And that to understand that this really is a multi disciplinary approach where everybody needs to understand the importance of adequate tissue, and how it can influence decision-making, even now with somebody with a stage one lung cancer.

Dr. Nicole Rochester:

Thank you so much. What about you, Dr. Bazhenova?

Dr. Lyudmila Bazhenova:

I fully agree with Dr. Bauman. So the one thing, kind of to add upon, as we’ve talked about before that molecular abnormalities and lung cancer becoming very complex NTRK point mutations is not the same thing as NTRK fusion. One responds to NTRK therapy and the other does not. And for every physician, you know what, if you’re using the molecular testing companies outside of your own institutions, just be aware that that molecular testing company does have a molecular pathologist on staff that you can actually talk to, and they do respond and they do reply. So if you have a mutation that you’re like, “I don’t know what that is.” Pick up the phone and call that company and they will be very, very happy to discuss the mutation with you and just highlight what is an appropriate treatment for that patient.

Dr. Nicole Rochester:

Thank you. Thank you both so much. Just to summarize, I mean, I have learned a lot which I always do in these programs, and to summarize, you all have spoken about the importance of biomarker testing, the evolution of testing and the importance and how it’s used now for not just late stage but early stage cancer. You’ve talked about the complexities associated with biomarker testing and really the need to fully adopt a multidisciplinary approach, not just as it relates to diagnosis and treatment, but even as it relates to communicating with patients and bringing in those nurse educators and those navigators and making sure that we take a multidisciplinary approach.

And you’ve also shared some insight about tips for communicating with patients, despite the time limitations that we face in the clinical environment and so I’m just really thankful for your time today. Really grateful for your expertise, and I want to thank all of you for tuning into this Empowering Providers to Empower Patients program. Have a wonderful day.

Dr. Jessica Bauman:

Thank you.


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What Are Biomarkers and How Do They Impact Lung Cancer Treatment Options?

What Are Biomarkers and How Do They Impact Lung Cancer Treatment Options? from Patient Empowerment Network on Vimeo.

What are lung cancer biomarkers, and how do they impact treatment options? Dr. Isabel Preeshagul defines biomarkers and explains how different biomarkers may help determine treatment options and aid in predicting treatment response. 

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

See More From INSIST! Lung Cancer

Related Resources:


Transcript:

Katherine Banwell:

Well, let’s define a few terms that are often confusing for patients. What are biomarkers?

Dr. Preeshagul:

Those are somatic alterations in the tumor just like EGFR, or ALK fusions, or MET exon 14, or MET amplification, or KRAS G12C.

These are all genes that are altered in the tumor. And these are genes that drive the tumor to grow. There are also other markers like PD-L1, which is a marker for response to immunotherapy. And there are various markers.

I could go on and talk about it for hours, but those are the more common ones that we know how to treat and how to handle and prognosticate.

Katherine Banwell:

And another term that’s sometimes confusing, what is a genetic mutation?

Dr. Preeshagul:

So, for genetic mutations, you have germline, and you have somatic. So, a germline mutation may be something like a BRCA1 or a BRCA2 that we see in patients with breast cancer or prostate cancer versus a somatic mutation which would be EGFR that I had mentioned or ALK fusion. So, germline mutations are the ones that we worry about being heritable.

And somatic mutations are those that are not thought to be heritable but thought to happen spontaneously within the tumor itself and cause the tumor to grow. We are constantly learning more about these though, however. But it’s really important to talk with your doctor to see if you have a germline mutation or a somatic mutation or if you have both.

And it is never wrong to seek an opinion with a genetic counselor to make sure that everyone in your family is safe, that you’re up to date on age-appropriate cancer screening, and that your family gets screened appropriately as well if indicated.

Katherine Banwell:

Are there specific biomarkers that affect lung cancer treatment choices?

Dr. Preeshagul:

Oh, definitely. One that I had mentioned is PD-L1. And this is a marker that we look for expression. So, based on FDA approval for pembrolizumab, if you have an expression of 50 percent or more, you are able to get immunotherapy alone in the upfront setting. If you have less than 50 percent, we often give you chemotherapy plus immunotherapy. And that’s based on a clinical trial known as KEYNOTE-189.

Other markers such as EGFR, as I had mentioned, ALK fusions, RET, NTRK, MET exon 14, ROS1, KRAS, HER2, you name it, those are alterations that we look for ideally in the upfront setting as well and can really affect treatment planning.

And those patients that harbor mutations like EGFR and ALK and ROS1 or MET exon 14, we know that these patients do better with targeted therapy upfront, not standard-of-care chemo. So, it’s really important to know about the presence of these alterations before you start treatment if possible.

What Key Tests Impact Lung Cancer Treatment Choices?

What Key Tests Impact Lung Cancer Treatment Choices? from Patient Empowerment Network on Vimeo.

Dr. Isabel Preeshagul, a lung cancer specialist, provides insight about lung cancer subtypes and how test results may play a role in determining the best treatment option for patients.

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

See More From INSIST! Lung Cancer

Related Resources:


Transcript:

Katherine Banwell:

When it comes to lung cancer, Dr. Preeshagul, what important tests should patients undergo that help in making treatment decisions?

Dr. Preeshagul:

So, it’s important to obviously confirm the diagnosis and make sure that it’s lung cancer, first of all. After that, you need to know the histologic subtypes. So, I mean, is this non-small cell, or is it small cell lung cancer?

And the difference between those two, it’s very important. They are not the same. Their treatments are different. Their prognosis is different. The staging is different. Everything is different. If you have non-small cell lung cancer, it’s important to know if you have adenocarcinoma or squamous cell carcinoma, large cell, neuroendocrine. It’s really important because the treatments vary. The prognosis varies. And how we approach those patients is different.

In addition to that, over the past 10 years, we have really come to understand the importance of next-generation sequencing testing, which I know we’re going to get to. But evaluating to see if your patient harbors any mutations or alterations that could be targetable because that would really change your treatment plan.

Katherine Banwell:

All right. So, let’s get to some of that testing. What is biomarker or molecular testing?

Dr. Preeshagul:

Sure. So, we use a lot of these terms synonymously. So, alteration, mutation, positive biomarkers, these are all basically one and the same. So, if you look at lung cancer 20 years ago, we really didn’t know about any of these. You had lung cancer, you got X, Y, and Z chemo. And that really was it.

But with the discovery of EGFR alterations and realizing that some patients harbor an EGFR mutation, and this mutation is what’s driving their tumor and then the discovery of erlotinib, or Tarceva, we realized that it’s important to evaluate for the presence of these mutations.

So, these are somatic mutations that occur within your tumor and drive your tumor to grow, and some of these alterations are targetable.

But some of these alterations that we find, unfortunately, and the majority of them, we don’t really know the significance of them as of yet, or we know the significance of them, but we don’t have a magic bean to treat them. But that does not mean that there won’t be something in the future.

Expert Perspective: Exciting Advances in Lung Cancer Treatment and Research

Expert Perspective: Exciting Advances in Lung Cancer Treatment and Research from Patient Empowerment Network on Vimeo.

What are the latest advances in lung cancer treatment and research? Dr. Isabel Preeshagul shares information about new treatment approvals, an update on targeted therapies, and new clinical trial approaches.

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

See More From Engage Lung Cancer

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Transcript:

Katherine Banwell:

Dr. Preeshagul, when it comes to lung cancer research and emerging treatment options, what specifically are you excited about? 

Dr. Preeshagul:

So, honestly, I feel that my interest and excitement are getting pulled in a million different directions as of now. Over the past 16 months, we’ve had 10 approvals in lung cancer, which is unheard of. 

Katherine Banwell:

Wow. 

Dr. Preeshagul:

It’s been a very, very, very busy time for us as thoracic oncologists, which is really exciting. 

I feel that we’ve really come to the forefront of cancer research, which is outstanding. In terms of what makes me excited, right now, I think it’s probably two things. There have been genetic alterations, somatic, that have really been almost like the orphan child in lung cancer. And we have unfortunately had to tell patients, “Listen, you have this KRAS G12C alteration. We know that it portents a poor prognosis. We know it’s more aggressive, but we don’t have anything for you that can target that.” 

And as of recently, within the past two months, we had this approval for a drug called sotorasib (Lumakras). This is based on the AMG 510 study. And it is a targeted therapy for patients with KRAS G12C, and the responses have been excellent. 

So, finally, we have something. So, it makes me feel good that when I have a patient that unfortunately has this alteration, I no longer have to give them the same song and dance, that I can talk about sotorasib and talk about it with confidence and talk to them about the data. And the same thing is true for patients with an EGFR exon 20 alteration with amivantamab that just got approved. So, it is now, I feel, that research is now unveiling these orphan alterations that we are now having targeted therapies for. 

So, that makes me excited. Also, something else that’s making me excited is the fact that we’re realizing and learning to anticipate these resistance alterations. So, we know if you have an EGFR mutation for say, we know now that, unfortunately, at some point, the treatments that we’re going to give you, this targeted therapy, this pill called osimertinib (Tagrisso) in the frontline setting, for some patients, unfortunately, at some point, it’s not going to work for you anymore. 

And this is because the cancer gets smart. It develops these resistance alterations. It knows how to usurp the osimertinib, and resist it, and make an alternate pathway, or change its form, turn into small cell, or come up with another alteration that makes the osimertinib not work. 

So, we’re realizing to look for these alterations earlier, faster than when a patient starts progressing, and anticipating them. So, our trials are now being designed in a way with combination therapy to figure out a way to outsmart this cancer. We always have to be one step ahead. And unfortunately, cancer is still many steps ahead of us. But we are learning to be smarter. 

Lung Cancer Treatment Decisions: What Should Be Considered?

Lung Cancer Treatment Decisions: What Should Be Considered? from Patient Empowerment Network on Vimeo.

What should be considered when making lung cancer treatment decisions? Dr. Isabel Preeshagul shares the factors that may affect treatment options, as well as how the patient can collaborate with their healthcare team for optimal care.

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

See More From Engage Lung Cancer

Related Resources:


Transcript:

 Katherine Banwell:

Dr. Preeshagul, let’s start with you introducing yourself, please.

Dr. Preeshagul:

So, my name’s Isabel Preeshagul. I’m a thoracic medical oncologist at Memorial Sloan Kettering Cancer Center, which is a large academic cancer center in the Northeast. And I’m part of a group of 24 thoracic oncologists.

I specialize in treating patients with non-small cell lung cancer, small cell lung cancer, mesothelioma, and some other thoracic malignancies but most really just focused on lung cancer. I have a very strong research interest in predictive markers for response to immunotherapy as well as targeted therapy.

Katherine Banwell:

Excellent. Thank you so much. What are the considerations when choosing a treatment for lung cancer?

Dr. Preeshagul:

So, that is a very weighted question. And I could talk about that for forever. But to try to be as succinct as possible, the most important thing is to really look at who you’re treating in front of you and try to treat the patient as a whole. It’s not only their diagnosis and their histologic subtype and their stage that’s important.

You really need to think about what’s important to the patient. Is someone a concert pianist or a violinist and giving them a treatment that could potentially cause neuropathy, could that be life altering for them? Or, are they of child-bearing age? What are their priorities?

So, that’s really important to me. Social aspects of a patient’s life, religious aspects, beliefs, ethical beliefs, all of that you need to take into consideration. And then getting more granular, you need to know about the tumor biology.

Do they have any driver alterations? Do they have any other predictive markers that may help you plan your treatment? So, it’s a lot of different things that go into treatment planning.

Katherine Banwell:

Just remind us what neuropathy is.

Dr. Preeshagul:

Sure. So, neuropathy is when the nerves that are in, I guess you could say, your fingers and toes start to damaged.

This can happen from diabetes, from having glucose that is too high for too long, or it can happen from certain chemotherapy agents that can affect the fine nerves in your fingers and toes and cause them to go numb. And this can really be painful. It can be life-altering. It can keep you up at night. It can make your sensation decrease.

So, if you’re walking on the floor, you may not feel a fine, little nail, or you may not even really feel the floor. And if you’re really focused on using your hands for playing the piano or violin or sewing or even any other kind of activity, it can really affect how well you’re able to perform.

Katherine Banwell:

Yeah. What is the role of the patient in making treatment decisions?

Dr. Preeshagul:

So, I think every doctor will give you a different answer for this. But for my practice, I really make sure that the patient is part of the team as well as family members, as long as the patient gives permission. I run everything by the patient, of course. I give them all the possible options ranging from ones that I think would be most efficacious to ones that I think are other options and of course, the option of no treatment, which is always an option, and sometimes, the best options.

So, I really say these are the things that we can offer you, but what do you feel most comfortable with? What’s important to you? And sometimes, patients are taken aback by this question because some patients like to be told, “Well, this is what we’re going do, and this is when we’re starting,” and X, Y, and Z. That’s not how I practice.

And it’s really important to me that the decisions come from the patient but are guided by me and my team.

Katherine Banwell:

Why is it important for patients to feel like they have a voice in their treatment?

Dr. Preeshagul:

So, that is such a good question. And I think a lot of it comes from the fact that you have a patient that had a completely normal life and all of a sudden get delivered this life-altering news that they have cancer. And everything that they had control over just seems to completely go out the window just in a matter of seconds.

So, making sure that a patient is back in the saddle and has control again and feels like they know what the next steps and feels like they know what they can expect is really important to them from what I can see. And I think that is something that allows them to feel like they’re a little bit more like themselves again.

They come to meet me. They don’t know anything about lung cancer. Their world has been completely rocked. And when they know their treatment plan and they know their stage and they know what to expect and they’re kind of a little bit more on autopilot, I can see in some patients them being able to exhale a little bit and feel like they’re in control again, and they know what – every Monday, I’m going to come and see Dr. Preeshagul. I’m going to get my treatment. I might not feel so good the next couple days, but I know the week after and the week after that, I might feel a little bit better. And they kind of are back in control again.

Patient Profile: Jeff’s Diagnosis of Parotid Cancer

On April 27, 2020, I received an email plea for help from Debra after she had read my book. Deb’s husband, Jeff, was struggling with a very malignant form of parotid cancer called Acinic Cell Carcinoma that, despite surgery and radiation, had spread to his chest and spine. Worse yet, there were no clear treatment choices available. Over the next 11 months, Deb & I have maintained an almost constant contact via emails and telephone chats. It has been my honor & privilege to get to know Deb. I am most impressed by her innate intelligence, rock solid determination and steadfast perseverance. Jeff is alive today primarily due to Debra’s tireless efforts to find a solution. 

On my request, Deb has penned this story of Jeff’s illness. I sincerely hope that it will inspire other patients and caregivers to become more empowered. Remember, Knowledge is Your Superpower.  Sajjad Iqbal, M.D.


 My husband, Jeff, was diagnosed with high-grade acinic cell cancer of the parotid gland in February of 2018 at the age of 65. He was a very young, healthy 65, who rarely saw a doctor and needed no regular medications. For 37 years he was a teacher and coach at a small school in Iowa. We have now been married for 47 years, have three children and three grandchildren. Jeff retired early from teaching when he was 61, but continued coaching for several more years. He also did small construction jobs with our son. We spent a lot of time traveling by car throughout the United States. It was a shock to both of us to hear that Jeff had this disease since he seemed to be so healthy. 

Several years before Jeff was diagnosed, he mentioned a small lump behind his ear. During a brief physical he had, he asked his doctor about it and was told to keep an eye on it and, if it got bigger, to see a doctor. In January of 2018, he noticed it was getting bigger so he saw the doctor. He was told he needed to get a biopsy but it was probably just a blocked salivary gland. As soon as I heard that, I figured it was cancer as Jeff’s mother had been diagnosed with salivary gland cancer many years before. Hers was a slow growing adenoid cystic cancer that was treated with surgery only. He had his biopsy done at a local hospital and when they said it was cancer, we had them make him an appointment at Mayo Clinic in Rochester, Minnesota which is only a couple of hours from our home. 

He had further testing done at Mayo which also showed a lesion at the top of his spine. In March of 2018, he had two separate surgeries to remove the tumors. Cancer was also found in 9 of 21 lymph nodes. He came through the surgeries with no problems. Soon after, he received six weeks of radiation on both of those spots. This was much tougher on him than the surgeries. His neck was badly burned, nausea, no appetite, etc. He made it through and slowly got back to feeling normal. At that time, we were told that chemo wouldn’t help him so he never received any. Three months later, a scan showed a nodule on his chest wall. They did a biopsy and found it to be the same type of cancer. He had a cyroablation on that spot.

Two months later, we found out that the cyroablation had not worked, the spot was bigger and there were several spots on bone. He had Foundation One testing done on his tumor and it showed very few mutations. There was only one mutation, RET, that had a possible treatment at that time. There was a clinical trial at Mayo for a targeted drug for that mutation and they were able to get him in. He started on that in February of 2019. He experienced no side effects and the chest wall tumor stayed about the same the entire time he was on the trial. Unfortunately, though, it was not stopping the bone mets. He had radiation three days in a row on a couple of them when they started causing him pain. Because it was not stopping the bone mets, he discontinued the trial. His oncologist told us that he didn’t know of any clinical trials at that time that would help him. The only thing he had to offer was chemo and possibly Keytruda but he was doubtful they would help very much. Needless to say, this left us feeling lost as to what to do next. 

The Mayo oncologist had told us that, in his opinion, clinical trials were the best way to go as you could get the newest treatments and you would be closely monitored. That is what I decided to look for first. Luckily, since Jeff was first diagnosed, I had been doing research on his cancer and possible treatments. There wasn’t a lot as it is a rare cancer. I have no medical background but was determined to figure things out as much as I could and find something that might be able to help. I found three clinical trials that I thought might work for Jeff. These trials did not exist when Jeff was first diagnosed. I sent them to his Mayo oncologist who had told me that he would be willing to look over a clinical trial if I found one. He agreed that the one I was most interested in looked like a good possibility and one of the trial locations was Iowa City which is about 3 hours from us. This is a trial that focuses on the genetic makeup of the cancer instead of the type of cancer. One of the mutations that Jeff has is FANCA and this trial was the first one I found where FANCA was one of the mutations they were looking for. Also, Jeff’s mother, who also had salivary gland cancer, is a carrier of the FANCA gene. There is no known relationship between the FANCA gene and salivary gland cancer but I feel there must be a connection. It is a rare cancer and to have a mother and son have it must be extremely rare. Our children have been tested for this gene and we discovered that our son is also a carrier. 

It was in February of 2020 when we went to Iowa City to try to get Jeff into the trial. We found out that they had changed the requirements for the trial and now you had to have had chemo in order to be accepted. The doctor started Jeff on the oral chemo drug, Xeloda, and told us that if anything grew, he would stop the chemo and try to get him in the trial. Jeff was also having some rib and back pain and that was treated with five days of radiation therapy. Following those treatments, he had some heartburn issues for a couple of weeks after which it slowly resolved.

At first, the chemo wasn’t too bad. Soon though, there were many nasty side effects; peeling palms and bottoms of feet, nausea, no appetite, etc. He did not feel up to doing much and spent a lot of time sitting or lying down. He was on this about five months and decided to stop due to the side effects. He was having some back pain during his chemo and was prescribed a narcotic pain reliever. It helped the pain some, but caused constipation, so he had to take more medication for that. He told the doctors he did not like taking the narcotic drug and wanted to find another alternative. They tried one drug and the first night he took it he ended up fainting and having make a trip to the hospital. Needless to say, we stopped that drug right away! They said he was having nerve pain from his spine but were not able to find the exact source. He ended up having a vertebroplasty on his spine as they thought it might help his pain.

Unfortunately, it didn’t help the pain and he also started having a weird feeling of a tight band around his abdomen. We made a trip back to the Mayo Clinic to see a pain specialist there. He thought Jeff might be helped with a nerve block on either side of his spine. He had this done and, not only did it not help, it made the band feeling we were trying to get rid of feel even tighter! This was very disheartening as we really thought it would help. Iowa City had started him on Gabapentin for his nerve pain and had been slowly increasing the dosage. He was also started on a low dose of Lexapro and, between those two drugs, he started to feel less pain in his back. The “band” feeling is still there, but not as bad as it once was. He was finally able to get into the clinical trial in August of 2020. The drug he is on now is a parp inhibitor that targets the FANCA pathway. He has been on this drug for about seven months now with almost no side effects. The targeted tumor has shrunk quite a bit and the bone mets have stayed the same. Unfortunately, on his last scans, there was a new spot on his liver. He was allowed to stay in the trial as it is working on his targeted tumor and he is scheduled soon for microwave ablation on his liver. 

When one treatment stops working, I always look for a new clinical trial first.

It is hard, however, as so many of the trials are for certain types of cancer. Even though you discover (from the mutations) that a certain drug may help your cancer, you can only be in that trial if you have a certain type of cancer. I hope in the future there are many more trials based on the genetic makeup of the cancer rather than the type of cancer. The other problem is that the majority of trials are held at larger hospitals that are just too far away to go back and forth as often as needed. It would be great if there were a way to have some of the treatments done at a larger hospital in your own state. Also, if you have a rare cancer, it is much harder to find clinical trials. 

I have a library background and have always relied on books and articles to find information about various topics. Now that the internet is available that has been my most important tool at this time. Also, websites like PEN, providing patient’s stories, healthy recipes and classes are very helpful. These types of sites have really helped me feel not so alone and have given me much more hope than I have ever received from any oncologist. It is also over the internet that I connected with Dr. Sajjad Iqbal after reading his book “Swimming Upstream.” He has been very generous with his time and willing to give suggestions and advice as he has a cancer similar to Jeff’s. It has been a great comfort to me to be able to e-mail him to get his opinion on something or ask a question. He has also helped me feel more hopeful than anyone else I have talked to – not only by his words but by his courageous example. 

When Jeff was first diagnosed, he was still coaching track. The entire track team wanted to have a benefit for him and sold t-shirts and wristbands, and had a meal and dodge ball tournament to raise money for him. Jeff is a very popular guy in this rural school district and I know it meant a lot that his team did this for him. We have support from our family and friends and feel that we have people we can call if we need something. The pandemic has kept us from getting together with people as often as we would like but we are looking forward to that in the future. 

We know that there is a good chance that Jeff’s cancer may never be cured. If that is true, I would like the next best thing – for him to live as long as possible, as well as possible with the cancer. We have had three very good years living with it and working around his medical appointments. I will do everything I can to help him have more of those years. 

Jeff has handled this whole situation very well from the beginning. He is a pretty laid-back person who takes things as they come and isn’t much of a worrier. He has kind of set an example for me just by taking things as they come. I feel his job is to fight the cancer and my job is to help him fight the cancer. Our lives are pretty much the same as they were before he was diagnosed – only with a lot more doctor appointments! 

Are Clinical Trials Too Risky? A Lung Cancer Expert Reviews the Facts.

Are Clinical Trials Too Risky? A Lung Cancer Expert Reviews the Facts. from Patient Empowerment Network on Vimeo.

Some patients fear that clinical trials may be too experimental and risky. Dr. Martin Edelman outlines the clinical trial process and addresses myths surrounding trials. Want to learn more? Download the Program Resource Guide here.

Dr. Martin J. Edelman is Chair of the Department of Hematology/Oncology and Deputy Director for Clinical Research at Fox Chase Cancer Center. More about this expert here.

View more from Fact or Fiction? Lung Cancer


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Transcript:

Patricia:

Here’s the last one that I have on my list here. Clinical trials are experimental and risky.

Dr. Edelman:

Yeah. Well, so is the rest of life. So, there generally – is there risk? Yes. Essentially, every patient is always a trial because we for the most part don’t – even in the disease states where we have very active treatment – so, let’s say – for example, we were talking about the EGFR mutation. So, we have excellent drugs. We have a drug now, osimertinib – outstanding drug, easy to take, low risk of side effects.

The earlier generations – there was a lot of rash, diarrhea. That’s been pretty much done away with. But on average, patients benefit from this drug for about a year and a half.

So, that’s not great if you’re 40 or 50 years old. You want to do better. So, what are our current studies? Well, we’re looking – we’re re-addressing a question that we thought had been answered, but really it wasn’t – about, well, what’s the value of chemotherapy plus this drug? What about the value of other drugs?

So, we can’t promise anybody anything, but our current treatments are still not good enough. There are certain diseases, let’s say Hodgkin’s disease, where you know you’re gonna cure almost all the patients up front or testicular cancer, etcetera, where – again, but thanks to trials, clinical trials, we now are at that stage. We’re not there yet in lung cancer, and the reality is is every patient should really be on a study. I think it’s – and we have this problem now in that our studies have also become far more complicated to enter people in because there are many more variables one has to look at it. What’s the molecular background of the tumor? How many prior therapies?

The condition of the patient, their organ function, etcetera – and the regulatory burden has become much, much greater. But clinical patients are in clinical trials. Let’s look at the question. Are they risky? Well, everything is risky, but we do a lot to manage that risk. Patients who are in studies are observed more closely. We have to. It’s the law. There’s frequently additional personnel assigned. They’re usually getting standard of care plus a new treatment or a new treatment followed by the standard of care or some variation of that.

They’re observed, like I said, much more carefully than we would otherwise. And so, I think actually patients on trials generally will do better, and we actually have evidence. Multiple individuals have looked at this – everything from first-in-man trials or early dose escalation studies, controlled studies – that show that patients, even those on the control arm, generally do better than similar types of patients who are not treated on studies because we just are more careful.

And the physician who participates in trials is generally someone who has a greater knowledge of the disease.

The Truth About Managing Lung Cancer Treatment Side Effects

The Truth About Managing Lung Cancer Treatment Side Effects from Patient Empowerment Network on Vimeo.

Are lung cancer treatment side effects avoidable? Dr. Martin Edelman reviews effective management strategies. Want to learn more? Download the Program Resource Guide here.

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Transcript:

Patricia:

Let’s talk a little bit about some of the concerns that patients have about the side effects. Let’s see: Side effects are unavoidable.

Dr. Edelman:

Well, that’s not true. As I said, what were the side effects? If you go back a couple decades and you ask patients what were they concerned about, many of them were concerned about nausea and vomiting. And that is largely a thing of the past. Many patients will still have some queasiness with treatment, but even our most nausea-producing drugs – we really do have outstanding drugs for the prevention of that. You have to use them. You have to take them.

It’s very important to give them appropriately. There are very excellent guidelines that are out there. Sometimes, patients are still undertreated, no question about that. Not every drug has industry strong backing. There’s one drug – for example, olanzapine, (Zyprexa) was actually developed as an antipsychotic, and I always tell the patients, “No, I don’t think you’re crazy.”

But it’s at a lower dose, and we have excellent, excellent evidence that that drug given for a few evenings after chemotherapy is extraordinarily effective along with the other drugs in preventing nausea and vomiting. So, that’s one thing.

Hair loss is still somewhat inevitable with certain drugs – the taxanes. But many of our regimens don’t cause hair loss.

Or as I tell folks – only you and your hairdresser will know for sure because its hair on the pillow, but the average person won’t pick you out of a crowd. Those are big concerns still. There still are potentially life-threatening effects from chemotherapy, and we spend a lot of time educating people about that. But those are not inevitable, and it’s actually a minority of patients in lung cancer.

One should not confuse – there are different malignancies. Still, the treatments for say leukemia, though even that’s changing, can be extraordinarily toxic or the bone marrow transplant patients. Many, not just lung cancer, but in the other diseases as well – many of the things that people attribute to the drugs are more due to the disease. So, I always say, “The greatest failure and side effects to the drugs are they don’t work well enough because the side effects of the disease can be considerable.” So, that’s the bigger issue. The immunotherapeutic drugs have a rather interesting set of side effects.

They are clearly initially or frequently better tolerated than the older cytotoxics, which still have an extremely valuable place in the treatment and cure of lung cancer. The immunotherapeutics have clearly been quite beneficial, but their side effects can be subtle and far less predictable and can be very severe. Virtually, any organ in the body can be affected by this. We like to say, “If it ends in ‘itis,’ you can get it from immunotherapeutics.”

So, there are lots of side effects, no question. But they can be managed. They can be prevented. They can be treated. Sometimes, we have to abandon a drug. So, people who get severe – what we call immunotherapy-related adverse events – may not be able to continue on their drugs. But even that is not necessarily always the case.

Patricia:

This next one really gets to the heart of the doctor-patient relationship. I shouldn’t share my side effects with my healthcare team because I don’t want them to stop my treatment routine.

Dr. Edelman:

Well, you can’t prevent the side effects if you don’t know about them. And I always would tell patients, I said, “You know, if you’re having a problem, please don’t call me at 4:00 on Friday afternoon. I’m gonna end up sending you to the emergency room, which I may anyway.” But a lot of times, we can solve certain things over the phone. There are a lot of side effects that can be treated and particularly if one is aware early on. So, yeah, you should share the side effects because how’s somebody gonna know how to deal with them?

Now, the problem we run into sometimes is in a population that’s on average 60s and 70s, could be younger. There’re lots of things that can be just part of ordinary life. Everybody gets headaches, back pain, etcetera, etcetera.

We have to treat those sometimes and evaluate them much more aggressively because of the possibility of them being related to disease or drug, but it helps to sort it out. You can’t be too blasé about it because sometimes things need to be looked at very urgently, particularly with immunotherapeutic drugs. Some of the side effects that can be severe can sometimes be very subtle in their onset.

Trustworthy Resources to Help You Learn More About Lung Cancer

Trustworthy Resources to Help You Learn More About Lung Cancer from Patient Empowerment Network on Vimeo.

Expert Dr. Martin Edelman shares credible resources to help lung cancer patients become informed and empowered.

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Transcript:

Patricia:

Let’s talk a little bit about health literacy. What would you suggest patients use for online resources? What are good resources?

Dr. Edelman:

So, there are some excellent resources. The International Association for the Study of Lung Cancer has resources for patients. The National Coalition of Comprehensive Cancer Center Network (NCCN) has resources. American Society of Clinical Oncology has resources. So, those or American Cancer Society. So, there are some really reliable sources out there. And there’s a great deal that’s very unreliable – people’s Facebook pages. I’ve seen this.

Patricia:

It’s a big place.

Dr. Edelman:

Everybody always – and I think it’s important for people to understand. There will be people who will get something and have a fantastic response. I’ve used anecdotes.

The anecdotes I’ve used are to illustrate the potential hope of benefit. They’re not exceptions to the rule anymore. They’re the good case scenarios. I could have just as many anecdotes of people who didn’t benefit and stuff. And I think it is important going into this – and that’s why we are reassessing patients constantly and getting repeat scans because we don’t necessarily know always – even if something’s 90 percent effective, it means 10 percent of the time it’s not.

And each patient – we’re getting better at individualizing and personalizing therapy, but we’re not perfect yet. And we probably never will be. So, there will always be anecdotes. I think what’s – as a friend of mine puts it – the plural of anecdotes is not data. When I say, “Well, chemoimmunotherapy works.” It’s not because I have anecdotes of that, though anecdotes illustrate the magnitude of benefit.

I have data that shows that the chemoimmunotherapy regimen was compared to chemotherapy and was clearly and unequivocally superior. When I give a statistic that 60 percent of patients, 65 percent, can benefit from those types of regimens. That’s based upon prospective randomized control trials.

Is Lung Cancer Treatment Effective in Older Patients?

Is Lung Cancer Treatment Effective in Older Patients? from Patient Empowerment Network on Vimeo.

Lung cancer expert Dr. Martin Edelman tackles common misconceptions about the effectiveness of lung cancer treatment in elderly patients. Want to learn more? Download the Program Resource Guide here.

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Transcript:

Patricia:

How about this one? Treatment is not effective in older patients.

Dr. Edelman:

Treatment is highly effective in older patients. It’s interesting. So, we had long arguments about, when I started in this field, whether treatment ever worked, and there were a number of studies that showed that chemotherapy – that one platinum was better – what’s called a platinum-based agent – was better than no therapy.

And then that two drugs were better than one drug. And people would say, “Oh, well, that doesn’t work in the elderly. And they should only get one drug.” And that’s because, I guess, their burning bush on the lawn told them this. And the fact is is that then got evaluated in a controlled trial, a very nicely done study by my European colleagues. But what was crucial was that they used somewhat lower doses of chemotherapy, a little bit different schedule of chemotherapy, and it was clearly superior to a single agent. And those were even days before immunotherapeutics and these targeted agents. So, many patients will benefit. You just have to be aware of certain basic principles in geriatric medicine as well as basic principles of lung cancer care.

So, first off, if the patient is elderly but their tumor is characterized by a driver mutation, they get one of the so-called targeted agents. And these are these days very non-toxic, easy to take, and highly effective.

Patients – many are going to be eligible for immunotherapy either as a single agent or combined with chemotherapy. Chemotherapy drugs could certainly be cut in their doses and still preserve much activity and be done safely.

I had a woman with small cell lung cancer. This is now about a year and a half ago or so. And she’s in her 80s. And she came to me because she was told – oh, just sorta get your affairs in order. And her disease was what we term an extensive small cell. The staging system’s a little bit different, but she didn’t have a really vast bulk of disease. And we treated her with standard chemotherapy drugs but at somewhat lower doses and some careful TLC and some other supportive things like growth factors.

She got all of her treatment on an outpatient basis, had an excellent response. We used radiation later to consolidate her treatment, and I see her back every couple of months. I wouldn’t say that she’s necessarily cured of her disease, but she does yoga every day. She lives a full life. She sees her grandchildren. And she’s, I think – I wanna say 83-84 years old. I think she’s quite grateful for that. It’s not the numerical age.

The flipside is if somebody’s 50 years old and they’re extremely ill when they come in, then one has to be very cautious about what one does. We used to say that those patients who come in who are severely impaired should simply get supportive care and hospice services.

And actually, how would I put it? Our lives have gotten a little bit more difficult lately because as things have gotten better for patients – because I can’t necessarily say that as much because some patients may be very susceptible to the effects of – their disease may be very susceptible to the effects of immunotherapy. I had one patient who was a younger gentleman who was on a gurney. He was in his 50s, lost an enormous amount of weight , he was on oxygen. We immediately gave him fluids. My fellow – I had an excellent fellow at the time – came to me and said, “Should we admit him and send him to hospice? Or just send him to hospice?” And I looked, and he had a biomarker that indicated that he might have an excellent response to immunotherapy, so we gave him solely immunotherapy and saw him back a few days later. He was still pretty touch and go. We gave him some fluids. A week after that – still, we were kinda touch and go, but he was still with us.

And then a week after that my medical assistant, comes in, and she says, “You know, he looks a little bit better today.” And he was in a wheelchair that day. And then a few weeks after that, he had a walker, and a few weeks after that a cane and about a year after that was asking me about whether or not he could go on a cruise. Again, I still see this gentleman – a couple weeks ago. It’s now almost two years later. And the question now that we have is – should we stop his treatment? And he is restored to complete full health, has had almost no side effects of treatment.

So again, this is not every patient. Some people will be treated and get every side effect and no benefit, but I think I’ve become a lot more reluctant to say that any patient should not at least be offered the opportunity for treatment knowing what the potential side effects are. And there still are considerable and sometimes severe side effects from therapy.

Does Surgery Cause Lung Cancer to Spread? The Facts.

Does Surgery Cause Lung Cancer to Spread? The Facts. from Patient Empowerment Network on Vimeo.

Could undergoing surgery cause your lung cancer to spread? Dr. Martin Edelman debunks this misconception.

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Transcript:

Patricia:

Sure. Here’s one I hadn’t heard until just now. Surgery causes lung cancer to spread.

Dr. Edelman:

Yeah, that’s common in certain states. When I was in Maryland that was a biggie.

So, there’s a myth that the air gets to the tumor, and then it spreads. But that’s certainly not true. It certainly is possible that in a bad surgical procedure that disease can be spread, but I think historically what that was was in the days before we had as accurate of radiographic studies. So, it’s kinda interesting. I always say, “I’m not that old, and I began medical school before there were CT scans.” So, the way you would diagnose something was with a chest x-ray. That was your best chest imaging. And the brain you’d image with something called a pneumoencephalogram, which is – you don’t know what that is. Most people don’t, and they should be thankful for that. But we had no real way of knowing these things. So, what would happen is there would be a surgical exploration. They would say, “Well, it looks very localized.” But then you’d go in, and there was lots of disease all over the place.

And for the most part, that doesn’t happen anymore. Now we have CT/PET scans. We have MRIs. Patients before they go to surgery usually have had – our pulmonary physicians will usually have sampled the nodes in the middle of the chest, the mediastinum. So, it isn’t that there aren’t surprises, but there are far fewer. And certainly, a properly done operation should not spread lung cancer. I would emphasize the properly done operation. It is my strong belief that nobody should have surgery for lung cancer from other than a board certified thoracic surgeon who spends their time thinking about lung cancer, preferably in an institution with a fair volume of this.

We know – it should be no surprise to people, practice makes perfect. People who really focus in an area – people at the NCI-Designated Cancer Centers, comprehensive cancer centers – who do a lot of this have greater expertise.

Lung Cancer Treatment Decisions: Which Path is Best for You?

Lung Cancer Treatment Decisions: Which Path is Best for You? from Patient Empowerment Network on Vimeo.

Dr. Martin Edelman reviews key factors that help to determine a treatment course for lung cancer patients.

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Transcript:

Patricia:

How are you approaching treatment decisions with your patients?

Dr. Edelman:

Well, the treatment decisions that we make – that I make are those that are in ways similar to other medical oncologists. It really depends because some of the patients may first go to a surgeon or whatever. However they come into the system, there are a few key factors in this. First is – make your decision based upon, Number 1, which kind of lung cancer. So, there are two major varieties. You have small cell and non-small cell, and they are treated – they are biologically distinct, and they are treated in distinct ways.

And then the next major consideration is the stage of the tumor, which is our way of expressing how advanced that is and deciding on both the therapy as well as conveying a prognosis and evaluating a patient for a clinical trial. And that’s based upon the size and location of the tumor; presence, absence, and location of lymph nodes; and the presence or absence and, these days, the number of metastatic areas of disease.

And then, lastly, and again depending a little bit upon the stage and interacting with all the others is what condition is the patient in? Anybody can get lung cancer, but still the median is in older individuals.

Many of these patients have compromised cardiac and pulmonary status as well as other diseases of aging, hypertension, cardiac disease, etcetera. Those people – one obviously has to tailor one’s treatments to fit those comorbidities. So, that’s sort of how the basic assessment – obviously, some patients show up with metastatic disease. We know that, but we go through a whole process for this.

The staging system that we use is complicated, and it keeps changing. We’re, gosh, up to version eight of this? I started with version three. I’m not quite sure I’ve fully mastered the current one, and the ninth edition is coming soon. And why does it keep changing? Because our knowledge of the disease keeps changing. The database keeps expanding.

We’re able to be more refined. Molecular variables have not yet fully entered into our considerations. Unquestionably, they will. But basically, one could consider lung cancer – despite the four major stages and multiple substages – that you really have three buckets that people will fit into. They have localized disease, which we will predominantly address with a localized therapy – surgery, radiation. And many of those patients, however, particularly those who might have a lymph node that’s positive, will benefit from chemotherapy to prevent recurrence.

We have patients with locally advanced disease. Primarily, those are patients who have lymph nodes located in the middle of the chest as opposed to more localized disease where if there’s a lymph node present it’s more in the lobe of the lung. Those patients with lymph nodes in the middle of the chest or larger tumors are approached with frequently a combination of chemotherapy, radiation, sometimes surgery.

And then we have patients with advanced disease who will be predominantly treated with drug therapies, which nowadays, depending upon the molecular background of the tumor, could be a targeted treatment if they have a specific mutation.

Something we see most frequently, though certainly not exclusively, in patients with scant or no smoking history, they may be approached with immunotherapy or chemotherapy combined with immunotherapy.

And there are many considerations that go into those decisions. And even in advanced stage, there are certainly roles for surgery and radiation depending upon whether there are structural abnormalities, occasionally whether there are relatively few areas or several areas of metastatic disease. And in the localized and locally advanced disease, our goal is cure in those, though we certainly are not there for every patient yet.

And in advanced disease, it’s extension of life, which is now quite considerable compared to untreated disease. And I think in certain situations, particularly those who only have a single area of metastatic disease, curative treatment is a realistic possibility. And even those with more disseminated disease, we’re now beginning to see a substantial fraction of patients who are still alive at five years or more. So, we’re beginning very cautiously to think that perhaps some of those patients may even be cured of their disease, though I’m not quite ready to say that.