Tag Archive for: research

Advances in Non-Small Cell Lung Cancer Testing

Advances in Non-Small Cell Lung Cancer Testing from Patient Empowerment Network on Vimeo.

Lung cancer expert Dr. Grace Dy discusses the latest research in lung cancer testing, including liquid biopsies and minimal residual disease (MRD).

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.

See More From INSIST! Lung Cancer

Related Resources:

An Expert Explains Predictive Biomarker Testing for Lung Cancer

An Expert Explains Predictive Biomarker Testing for Lung Cancer

The Role of Antibody Drug Conjugates in Lung Cancer Care

The Role of Antibody Drug Conjugates in Lung Cancer Care

What Biomarkers Affect Lung Cancer Care and Treatment

What Biomarkers Affect Lung Cancer Care and Treatment?


Transcript:

Katherine Banwell:

As we know, researchers are still discovering new markers. Could you tell us about the latest news and research in biomarker testing for non-small cell lung cancer? 

Dr. Grace Dy:

Oh, there is a lot going on. You know, sky’s the limit. But just an example: we have liquid biopsies that are in clinical use right now, typically in the stage IV setting.  

But beyond that, we’re also having what we call minimal residual disease testing in what we call adjuvant situations. For example, patients who had surgery, there’s a big proportion of patients who still relapse.  

So, finding out – and our scans are imperfect. They will not be able to detect micro metastatic clones or even a small cluster.  

If you have a million cancer cells clustered somewhere, it will not show on the scan. 

Katherine Banwell:

Each and every one of them. 

Dr. Grace Dy:

Right. So, is there a better way? And so, that’s the question: can we detect it in the blood? So, these are assays that are being developed. Looking at different angles, not necessarily mutations, but maybe what we call epigenetic, meaning changes on top of the DNA that makes the DNA molecule be different in terms of whether some areas of the gene will be expressed or not. 

And so, looking at these patterns because they’re different in cancers versus non-cancers. So, whether you can see it in the blood. So, it’s a ripe area.  

There’s a lot of – so, there’s some overlap with early cancer detection and MRD, or minimal residual disease testing. 

So, I think there’s an intense interest in developing these. But none are fully validated yet. There are trials that are going on, the studies that are ongoing to prove the utility and validity of these tests. So, we’re very excited. And obviously, AI everywhere. You have ChatGPT, right? So, you have AI being incorporated in diagnostics as well, in radiology, in pathology, to see: hey, maybe can we use AI technology to even maybe one day give us a mutation profile, right?   

Katherine Banwell:

Yeah. 

Dr. Grace Dy:

And that would be huge, right? But we’re not there yet. 

How a Skin Cancer Expert Empowers Patients

How a Skin Cancer Expert Empowers Patients from Patient Empowerment Network on Vimeo.

 

Dr. Anna Pavlick is a medical oncologist with over 20 years of experience treating patients with skin cancer and is the founding Director of the Cutaneous Oncology Program at Weill Cornell Medicine and NewYork-Presbyterian. To learn more about Dr. Pavlick, visit here.

What are steps does skin cancer expert Dr. Anna Pavlick take to empower her patients? Dr. Pavlick explains how self-education and being comfortable with your healthcare team are key components of patient empowerment.

 

Katherine:

Yeah. Dr. Pavlik, how do you empower patients? 

Dr. Pavlick:

You know, when I talk to patients I really do try to number one: educate them. I am big believer in bad artwork, because I’m a bad artist. And so I really try to draw out schematics to help patients understand how they therapy that I’m proposing is going to work, so they understand the mechanism. Patients will also go home with printed handouts so that they can go back and read about what we talked about, because many times patients absorb maybe one-quarter of what’s been said in a consult. 

I encourage people to bring their family members or friends so that they can hear; two sets of ears is always better than one. And I fully support them; if they want to go get a second opinion, my answer is, “Absolutely.” I do not get offended. I feel that if – because a lot of times the patient’s going to say, “I don’t want a second opinion, but my family does.” You’ve got to live with your family. Go get the second opinion. 99 percent of the time, experts who do this for a living all have the same answers. And so it just is going to solidify for your family that the right thing is being done, and then you can also decide where do you feel most comfortable?  

If Dr. A and Dr. B tell you the same thing, what environment do you feel most comfortable in, so in the event that you had questions, or you didn’t feel well, where do you want to go? So, I strongly encourage that. And if somebody comes back and says, “You know, I really think that this place fits me better,” my answer is, “That’s absolutely fine; thank you for letting me know. If there’s anything I can do, please reach out.” Because, again, bottom line is I just want the best outcome for the patient.  

What Do Advanced Non-Melanoma Skin Cancer Patients Need to Know About Treatment and Research?

What Do Advanced Non-Melanoma Skin Cancer Patients Need to Know About Treatment and Research? from Patient Empowerment Network on Vimeo.

What therapies are emerging for advanced non-melanoma skin cancer (ANMSC)? Dr. Anna Pavlick shares the latest in ANMSC research news, including developments in targeted therapy and immunotherapy. 

Dr. Anna Pavlick is a medical oncologist with over 20 years of experience treating patients with skin cancer and is the founding Director of the Cutaneous Oncology Program at Weill Cornell Medicine and NewYork-Presbyterian. To learn more about Dr. Pavlick, visit here

Katherine:

Are there developments in advanced non-melanoma skin cancer treatment and research that patients should know about?  

Dr. Pavlick:

Well, I think when it comes to non-melanoma skin cancers, the developments over the last five years have been groundbreaking. 

I think the first major advancement we made was to identify that the hedgehog pathway is a pathway that basal cell cancers follow in order to spread to other parts of the body. And we found out that if we can block that pathway, we can control basal cell cancer very easily because more than 90 percent of basal cell cancers use that pathway to spread. So it’s like a roadblock. If you’re doing construction and you come to point where you’ve got the detour, well, you can’t keep going straight ahead – you get stopped. And that’s what targeted therapies do, and we found that there are hedgehog inhibitors that are these roadblocks for basal cell cancer.  

Dr. Pavlick:

So what has been evolved since then is looking at immunotherapy as a way to control non-melanoma skin cancers because, as you know, melanoma was the first place that immunotherapy really became paramount as the key treatment that makes the hugest impact on patients. And because of what we learned in melanoma, finding out that the number of mutations that melanomas have make it very susceptible to immunotherapy. We then went and looked at, “Well, what does squamous cell cancer have, what does basal cell cancer have?” 

Well, we found out that basal cell, squamous cell and Merkel cell cancer have a very high mutational burden, and translating that, we said, “Well, we now know this: these are cancers that should now response to immunotherapy as well.” And they do. And they do very, very beautifully. Unfortunately, like every story, it’s not 100 percent of the tumors that will respond. It’s basically in the 50 percent range. So although it’s still a very high number, you need to know that going into it when you treat a patient with locally advanced squamous cell cancer, only 50 percent are going to have a response. So, if you don’t see that tumor getting better pretty darn quickly, you better start thinking, “This might be somebody who’s not going to respond to immunotherapy, and what’s going to be my Plan B?”  

Katherine:

Right.  

Dr. Pavlick:

Because squamous cell cancers in general respond very, very quickly to immunotherapy. 

Usually within a matter of four to six weeks, you’re already starting to see improvement. When it comes to basal cell cancer on the other hand, basal cell cancers – because they develop very, very slowly over years – it takes months of immunotherapy to get them to respond. So I tell patients with locally advanced basal cell, “You really have to be patient, because we expect this to take somewhere between three and 6 months for us to start seeing something get better.” It doesn’t mean that it’s not working, it’s just basal cells just respond much slower. I think when patients are prepared and knowing that this is not a quick eight weeks – we’re going to know for sure whether this helps or not – it helps patients to be able to understand that, “I’m in this for at least six months –maybe longer.” 

Follicular Lymphoma Research and Treatment Updates

Follicular Lymphoma Research and Treatment Updates from Patient Empowerment Network on Vimeo.

Dr. Matthew Matasar shares follicular lymphoma treatment and research highlights from the 2022 American Society of Clinical Oncology (ASCO) meeting.

Dr. Matthew Matasar is a lymphoma expert at Memorial Sloan Kettering Cancer Center and Chief of Medical Oncology at Memorial Sloan Kettering Bergen. To learn more about Dr. Matasar, visit here.

See More from The Pro-Active Follicular Lymphoma Patient Toolkit

Related Programs:

What Is Follicular Lymphoma? What Are the Symptoms?

What Is Follicular Lymphoma? What Are the Symptoms?

What Treatment Options Are Available for Relapsed Follicular Lymphoma?

What Treatment Options Are Available for Relapsed Follicular Lymphoma?

Emerging Follicular Lymphoma Treatment Approaches

Emerging Follicular Lymphoma Treatment Approaches


Transcript:

Katherine Banwell:

Cancer researchers recently came together to share findings at the annual American Society of Clinical Oncology meeting also known as ASCO. Are there highlights from the meeting that follicular patients need to know about? 

Dr. Matasar:

The pace of innovation in follicular lymphoma is absolutely breathtaking. And the treatment options that are being explored and coming available to us now are really extraordinary. And they’re extraordinary because they offer this unparalleled possibility of very highly effective and less toxic, fewer less long-term and short-term side effects than prior options may have afforded us.  

This is particularly true in two general areas of investigation. The first is what we call immunotherapy or treatments that are designed to leverage your own immune system’s ability to kill cancer cells. And the second is what we would call targeted therapies, treatments that are designed to attack a specific enzyme, or protein, or pathway that is relied upon by follicular lymphoma cells to survive and to grow.  

Immunotherapy for follicular lymphoma is perhaps the most exciting of everything right now. And there’s a class of agents that are called bispecific antibodies. These are antibodies or proteins that have two specific regions on them, one that binds onto the surface of the follicular lymphoma cell and one that serves as sort of an activator or tractor beam for your own body’s healthy T cells. So, it attaches to the B cell. It drags over and stimulates T cells, and says, “Get them, guys.” And it causes your own body’s T cells to recognize, attack, and kill lymphoma cells for you.  

There’s a number of these agents that are in active clinical development. And we say updates at ASCO this year showing that these agents are very effective at treating follicular lymphoma even when prior chemotherapy agents have been unsuccessful at achieving durable remissions with really very little toxicity particularly after the first month of treatment is under your belt.  

Katherine Banwell:

What are you excited about when it comes to follicular lymphoma research? 

Dr. Matasar:

What I’m excited about is the overall pace of innovation. We have more drugs that are approved in the treatment of this illness in the last five years than in the 20 years that preceded it. And we have more options that we expect to become available over these next three years than were approved in the last five, immunotherapy, targeted therapy, therapies that modified the genetic signatures of the cells, treatments that used living cells and genetically modified those cells to attack your lymphoma, combinations of immunotherapies and targeted therapies.   

The innovation is really extraordinary, and it gives me tremendous hope that over these upcoming years, I’m going to have even more choices to offer my patients with follicular lymphoma, ways to improve their quality of life, the length of their life, and to find better ways to manage this illness.  

Katherine Banwell:

That sounds so promising. 

Why Is It Important for Follicular Lymphoma Patients to Be Empowered?

Why Is It Important for Follicular Lymphoma Patients to Be Empowered? from Patient Empowerment Network on Vimeo.

Lymphoma expert Dr. Matthew Matasar explains why it is important for patients with follicular lymphoma to feel empowered in their care and shares how he empowers his own patients.

Dr. Matthew Matasar is a lymphoma expert at Memorial Sloan Kettering Cancer Center and Chief of Medical Oncology at Memorial Sloan Kettering Bergen. To learn more about Dr. Matasar, visit here.

See More from The Pro-Active Follicular Lymphoma Patient Toolkit

Related Programs:

Why Should Follicular Lymphoma Patients Seek a Second Opinion?

Why Should Follicular Lymphoma Patients Seek a Second Opinion?

What Is the Patient’s Role in Follicular Lymphoma Treatment Decisions?

What Is the Patient Role in Follicular Lymphoma Treatment Decisions?

Why Follicular Lymphoma Patients Should Speak Up About Symptoms and Side Effects

Why Follicular Lymphoma Patients Should Speak Up About Symptoms and Side Effects


Transcript:

Katherine Banwell:

How do you empower patients? 

Dr. Matasar:

For me, empowering patients isn’t something that you do. It’s just inherent to the practice of medicine and taking care of people with lymphoma. There’s lots of ways that you can think about this, but one of my standard lines when I’m talking with patients is that I’ll say that this is their climb.  

They’re the mountain climber, and I’m just the sherpa. I’m the one lugging the bags and trying to help point out the paths. But this is their climb, and it’s about them, and it’s never about me.   

Katherine Banwell:

Why is it important to empower patients? 

Dr. Matasar:

It’s inherent. It’s obvious at some level that you have to empower patients because the care of patients, the care of people, is about people. It’s not about the doctor, or the nurse, or the clinical trial, or the drug, or pharma, or the hospital. It’s about you. I can only be as good a doctor as I am at listening to you or to my patient. And this is extremely clear with diseases like follicular lymphoma, which have such tremendous variety in terms of how it affects people, variety in terms of the options that I have to offer as treatments. It’s an extremely individualized and personalized situation.  

So, if it’s not about you, and your goals, and your preferences, and your priorities, then I can’t do my job right.  

Katherine Banwell:

Right. You need as much information as possible from the patient.  

Dr. Matasar:

It’s all about the patient. And the clearer that I understand my patient’s personality, priorities, preferences, family situation, all of that stuff, the better job I’ll be able to do at helping them pick the right path forward.  

What Are the Risks of CAR T-Cell Therapy?

What Are the Risks of CAR T-Cell Therapy?  from Patient Empowerment Network on Vimeo.

Dr. Melissa Alsina, a myeloma expert from Moffitt Cancer Center, reviews the potential side effects of CAR T-cell therapy for myeloma patients, and discusses how these side effects may be managed.

Dr. Melissa Alsina is an associate professor of medicine in the Blood and Marrow Transplant Program at Moffitt Cancer Center in Tampa, Florida where she also serves as head of the Multiple Myeloma Transplant Program. Learn more about Dr. Alsina, here.

See More from Innovative Myeloma Therapies

Related Resources:

Myeloma Research | CAR-T Cell & Bispecifics Study Updates

Myeloma Research | CAR-T Cell & Bispecifics Study Updates

What Are Common Myeloma Treatment Side Effects?

Transcript:

Katherine:

What are the risks of CAR T-cell therapy? 

Dr. Alsina:

So, in myeloma, it is, in general, pretty safe. There are two main – well, actually, I would say three main side effects that we can see with CAR-T. Number one is called cytokine release syndrome, and we are getting these cells from the patient’s immune systems, sending them a lab to be manufactured so that they can recognize this protein, BCMA, in the myeloma cells. 

And then, those cells are grown, so essentially, what we’re doing is that we’re taking the immune system of the patient, and we’re making it very specific against the myeloma cell. And then we’re growing it, so we’re making a hyperactive immune system, and then giving it back to the patient. And then, those cells, they are going to go ahead and react against the myeloma cells and start killing the myeloma cells, and in doing that, that reaction, that immune reaction will elicit release of a lot of proteins – cytokines – and that can cause side effects. 

When that happens, that is called cytokine release syndrome, and the most common finding with that is a fever. Patients can have a high fever. And then, it varies depending on the CAR-T that the patients are getting. So, for example, with this Abecma, usually, the reaction happens right away after you get the cells – the next day, so that’s why these patients, we admit them to the hospital because we know that this cytokine release syndrome is going to happen right away.  

And, it could be just a fever. In the majority of the patients, it happens like this, is just a fever, but it may be about 20 percent of the patients, that reaction can be more severe, and it could be a fever with low blood pressure or shortness of breath, and it could be a fatal complication, but that’s very, very rare.  

And we know – we can identify, obviously, when it’s happening, and there’s a medication that we can give to actually sort of counteract that reaction and don’t let it progress, and in the majority of the patients, that works quite well.  

Katherine:

What other side effects are there for CAR T-cell therapy? 

Dr. Alsina:

Yeah, so besides the main one that I discussed, cytokine release syndrome, the other thing that could happen is neurotoxicity, meaning that T cells can actually cross to the brain and cause toxicity in the brain, and depending on the type of CAR-T that the patient is getting, it could be less or more risk.  

But essentially, what could happen is that the patient could have some aphasia, like for example, difficulty finding words. It could also be just a headache. Patients could have seizures, so we do give the patients medication to prevent seizures while they are undergoing CAR-T. 

They can have difficulty writing, so we make every patient write a sentence every day to make sure that’s not being affected. And we do a mini mental status every day. Every day, we’ll go see the patient and ask them 10 different questions, like “Where are you? What day is it? Who’s the president?”, we show them an object, and so on so we can monitor these things very closely. If we see any changes, then we can intervene. Usually, for neurotoxicity, we give steroids. 

The good news, though, is that this is very rare. With Abecma, it’s very rare that a patient would have severe neurotoxicity. With ciltacabtagene autoleucel (Carvykti), which is the one that was approved more recently, from 100 patients that were treated, there were five patients that had this delayed neurotoxicity, some of them with movement disorders, like Parkinson’s-like systems, and these were delayed. These didn’t happen in the first few weeks. 

But we learned what are the risks associated with these, the majority of the patients that have very high tumor burden, so what we do is that we monitor the patients very closely, especially the patients with high tumor burden. The ideal situation is that we can control the disease a little bit better before taking them to CAR-T, but even when that’s not possible, what we do is that we intervene early on if we see that these patients are getting any side effects and being more aggressive with the intervention. 

And then, the third, more important side effect is these CAR-T cells can prevent blood counts to recover. For CAR-T, we give chemotherapy.  

That would allow the T cells to expand, and this chemotherapy can drop the blood counts, but usually, they recover quickly, but in some patients, this recovery doesn’t happen quickly, and patients can have low counts for months, and obviously, that would bring increased risk of infection. 

So, that is a potential complication, especially in patients that have received a lot of prior therapies, and it’s not common that a patient would take a long time, but it could happen, and sometimes, occasionally, we’ve had to give these patients a stem cell boost from stem cells that we have stored to actually make their counts recover. So, those are essentially the three most common complications, but in general, it’s a treatment that is well tolerated and very manageable, and I can tell you the majority of the patients that I’ve treated, they’ve said this is easier than a transplant.  

How Do Test Results Impact Myeloma Treatment Options?

How Do Test Results Impact Myeloma Treatment Options?  from Patient Empowerment Network on Vimeo.

Myeloma expert Dr. Melissa Alsina reviews the test results that are taken into consideration when choosing a treatment approach for patients.

Dr. Melissa Alsina is an associate professor of medicine in the Blood and Marrow Transplant Program at Moffitt Cancer Center in Tampa, Florida where she also serves as head of the Multiple Myeloma Transplant Program. Learn more about Dr. Alsina, here.

See More From INSIST! Myeloma

Related Programs:

 
How Is a Myeloma Patient in Active Treatment Monitored?

How Is a Myeloma Patient in Active Treatment Monitored?

Understanding MRD and What It Means for Myeloma Patients

Understanding MRD and What It Means for Myeloma Patients

Key Factors That Guide Myeloma Treatment Decisions

Key Factors That Guide Myeloma Treatment Decisions


Transcript:

Katherine:

We know that patients undergo testing when diagnosed. How do test results affect treatment choices? 

Dr. Alsina:

So, in general, we do a bone marrow, we check for the genetics of the myeloma cells, see what are the genes that are affected in the myeloma cells, and that helps us define myeloma as high-risk or standard-risk, and that can help us decide what treatment we want to give these patients. Unfortunately, it’s not totally well defined. 

I wish we could use that in a better way and there are drugs that could really target, but there is some information. We know, for example, that proteasome inhibitors are important for patients with high-risk myeloma, so we definitely try to include that in a patient that is high-risk, and the other thing is that patients that are high-risk, it’s even more important to get to that remission, so we’re going to push treatment to get there, treat these patients a little bit more aggressively. 

Other than that, depending on, for example, what are the blood counts – some patients have a lot of bone marrow involvement and their blood counts are very low. This is not common, but it happens, and so, when that happens, we might be more aggressive up front and give these patients more aggressive chemotherapy to clean the bone marrow before changing them to the more normal therapies because the treatments that we give, like Revlimid (lenalidomide), Velcade (bortezomib), Darzalex (daratumumab) can depress the counts, right? 

So we’re in that battle. The patients already have low counts, we give the treatment, the treatment lowers the counts further, so it’s hard to give these treatments in these settings. And then, the third thing that we take into account is kidneys. About 25 percent of the patients will have renal insufficiency when they are diagnosed. Some of these drugs, particularly the immunomodulatory drugs like the Revlimid are metabolizing the kidneys, so it’s very hard to dose these drugs when the patients have renal insufficiency. 

So sometimes, for these patients, we avoid the IMiDs up front. We give a different combination until the disease gets better, and then we introduce the IMiDs. We think these immunomodulatory drugs like Revlimid are super important in the treatment of myeloma, so we want to give them, but sometimes we have to delay starting them until the patient’s kidney function improves.  

Expert Update: Bladder Cancer Treatment & Research News

Expert Update: Bladder Cancer Treatment & Research News  from Patient Empowerment Network on Vimeo.

Dr. Fern Anari reviews highlights from the ASCO 2022 meeting and shares her expert perspective on the future of bladder cancer treatment.

Dr. Fern M. Anari is a genitourinary medical oncologist and assistant professor in the department of hematology/oncology at Fox Chase Cancer Center. Learn more about Dr. Anari, here.

See More From The Pro-Active Bladder Cancer Patient Toolkit

Related Programs:

How Does Targeted Therapy Treat Bladder Cancer?

How Does Targeted Therapy Treat Bladder Cancer?

How Does Immunotherapy Treat Bladder Cancer?

How Does Immunotherapy Treat Bladder Cancer?

Current Treatment Approaches for Bladder Cancer

Current Treatment Approaches for Bladder Cancer


Transcript:

Katherine Banwell:

Dr. Anari, cancer researchers recently came together for the 2022 ASCO meeting. Were there any highlights from that meeting that bladder cancer patients should know about?  

Dr. Anari:

Yes. So, our annual meetings are always a really exciting time to learn about and share the results of really cutting-edge research that’s been going on. And this year at ASCO 2022, I think there were several standout studies for various stages of bladder cancer. 

So, in patients with localized bladder cancer, again, similarly to what we discussed with immunotherapy and what we call BCG unresponsive bladder cancer, they looked at combining BCG with another new drug. And what they found is that the cancer shrunk down completely in over two-thirds of cases. 

And those responses tend to last over two years of follow-up. The drug was shown to be safe and tolerable. So, I think that’s a really exciting potential future treatment for people. There was another study that looked at a targeted treatment called enfortumab vedotin, which is typically used in the metastatic setting after someone’s received chemotherapy and/or immunotherapy. They looked at using that before surgery in localized muscle-invasive bladder cancer. 

The reason it’s important to look at drugs like this is because the standard of care right now is to give cisplatin-based chemotherapy before surgery to remove the bladder.  

But not everyone is eligible to get that cisplatin drug for various reasons. So, the current standard of care is to just go straight to surgery. But we know that by giving some form of a chemotherapy before, that helps increase cure rates. 

And what they actually found in this study looking at enfortumab vedotin is that they were able to shrink down cancer completely, meaning at the time of surgery there was no cancer left in the bladder 36% of the time, which is actually on par with our standard of care treatment that we use today.  

So, I think this also shows a lot of promise in patients who historically would need to go straight to surgery without any preoperative treatment. And then, lastly, HER2 is a type of targeted therapy as well that’s most commonly known in the breast cancer treatment world. But it’s also been looked at in bladder cancer.  

And there’s a new drug that’s being studied that really strongly targets HER2, which is expressed on some bladder cancer cells. So, they’re looking at this new drug in combination with immunotherapy, which is already approved in bladder cancer. And, again, I think this is another really promising combination for patients who’ve already received other treatments for their bladder cancer.   

Katherine Banwell:

It sounds like a lot of progress is being made in the field.  What are you excited about when it comes to bladder cancer research?   

Dr. Anari:

I think what excites me the most is being able to offer patients both the standard treatment options where, really, the clinical trials of yesterday are our standard treatments today. So, I’m excited to be able to offer them the standard treatment but also give them the background of why that’s approved and why we use it but also give them the hope that we have these really promising drugs.  

And, luckily, at our cancer center, we have access to a lot of these before they’re approved by the FDA. So, it’s really exciting to be able to offer this cutting-edge research in the form of treatments to our patients. 

Expert Advice for Finding an MPN Clinical Trial

Expert Advice for Finding an MPN Clinical Trial from Patient Empowerment Network on Vimeo.

Dr. Andrew Kuykendall, an MPN specialist and researcher, shares tips for learning about available clinical trials. Dr. Kuykendall emphasizes the importance of seeking a consultation with a specialist and suggests questions to ask your provider about clinical trials.

Dr. Andrew Kuykendall is an Assistant Member at Moffitt Cancer Center in the Department of Malignant Hematology. Dr. Kuykendall’s clinical and research efforts focus on myeloproliferative neoplasms (MPNs), MDS/MPN overlap syndromes and systemic mastocytosis (SM). Learn more about Dr. Kuykendall, here.

See More from INSIST! MPNs

Related Programs

Which Tests Do You Need Following an MPN Diagnosis

Which Tests Do You Need Following an MPN Diagnosis?

Which Gene Mutations Impact Myelofibrosis Treatment Options?

Which Gene Mutations Impact Myelofibrosis Treatment Options?

MPN Research and Optimism About Curative Therapies-2

MPN Research and Optimism About Curative Therapies


Transcript

Katherine:

How can patients find out about clinical trials? Are there specific questions that they should be asking their doctors about to participate in a trial?

Dr. Kuykendall:

Yeah. I think it’s tough. One way – there are a few different tools that I would recommend. One, if you’re very interested in just what trials are going on you can go to this national cancer trials, or NCT, network and try to understand online what trials are available. Clinicaltrials.gov is the actual website but that’ll show you the ongoing clinical trials that are there.

You can type in a disease state, so you can type in polycythemia vera or myelofibrosis or essential thrombocythemia, and it’ll give you a huge list of all the trials that are there. It can be kind of overwhelming because it’ll list all of the trials that have ever been done, but there are different ways that you can stratify those results and look for trials that are just recruiting that are active and that’ll taper down that list. And when you click on those trials there usually is at the bottom a list of participating centers that are there. So, you can see the different centers that are there. Overall, I think that that is a very broad way of doing it and somewhat complicated.

What I would ask is – and one of the things that we always push for is – while most of these myeloproliferative neoplasms can be treated quite easily in the community, meaning that the actual mechanisms of what’s being provided is not something that requires a specialized center. I think the understanding of the disease really does. We always recommend having someone in your corner who’s an expert. They don’t have to be the one who is most involved in your care but having someone in your corner who’s an expert.

That’s the person who’s going to know what trials are going on, what trials may be coming down the pipeline, where those trials may be occurring, and they might also tell you “Okay, here are the things that would prompt you to maybe want a trial.” I had a lot of patients that were surprised to realize there were trials available just because they had – they were getting six or seven phlebotomies a year. They were complaining about that but they figured that was just the ways things were. Lo and behold, there was actually a trial that was ongoing that was trying to reduce the need for those phlebotomies in otherwise low-risk patients.

You can always go to clinicaltrials.gov but also try to ask your doctor about hey is there, if you haven’t seen an expert, is there someone close by an expert that I can see for a second opinion just to understand the disease and ask about trials. Usually everyone’s okay with that and when you do see an expert, say “Hey, first of all what trials are right for me now and what in the future might be reasonable and how am I going to know and how often should I check in to see what things are available?” 

An Expert Reflects on Hopeful Advances in Myeloma Treatment

An Expert Reflects on Hopeful Advances in Myeloma Treatment from Patient Empowerment Network on Vimeo.

Research is advancing quickly in myeloma. Donna Catamero, a nurse practitioner specializing in myeloma, shares why she is optimistic about the future of myeloma care and treatment.

Donna Catamero is Associate Director of Myeloma Translational Research at Icahn School of Medicine at Mount Sinai Hospital in New York City.

See More From Engage Myeloma


Related Programs:

 

Myeloma Research What’s the Latest Treatment News

Myeloma Research: What’s the Latest Treatment News?

Myeloma Treatment: When Should a Clinical Trial Be Considered?

Myeloma Treatment Decision: What Should Be Considered?


Transcript:

Katherine:

When it comes to myeloma research and emerging treatment options, what are you excited about specifically?

Donna:

So, I’m very excited about CAR T therapies, bispecific therapies and even trispecific therapies. And this is really harvesting a patient’s immune system to attack the myeloma cell. And I’m really excited about the results we’re seeing in the clinical trials. We’re seeing for a single agent therapy – and most patients know that with myeloma therapies they’re on combination therapies, but what we’re seeing is, with a single drug, that we can achieve very, very deep responses and very durable remission. So, patients who’ve had several relapses and are on their eighth, ninth, 10th line of therapy – we’re now able to achieve deep and durable remissions, which even five years ago was almost unheard of. So, this is really a very exciting time in myeloma research. 

Metastatic BC Research: How Can You Advocate for the Latest Treatment?

Metastatic BC Research: How Can You Advocate for the Latest Treatment? from Patient Empowerment Network on Vimeo.

What do metastatic breast cancer patients need to know about the latest research news? Dr. Megan Kruse shares highlights from the 2020 San Antonio Breast Cancer Symposium (SABCS), along with her advice for advocating for the right testing to help guide treatment options.

Dr. Megan Kruse is a Breast Medical Oncologist at the Cleveland Clinic. More about this expert here.

See More From INSIST! Metastatic Breast Cancer

Related Resources:

 

What Could Advances in Breast Cancer Research Mean for You?

How Can You Advocate for the Best Breast Cancer Care?

Factors That Guide a Metastatic Breast Cancer Treatment Decision

 


Transcript:

Dr. Kruse:                   

At this year’s San Antonio Breast Cancer Symposium, there were a few interesting presentations about the treatment of first-line metastatic triple-negative breast cancer that I think patients should be aware of.

Two of the presentations centered around trials that were presented in the past. Those reporting, patients reported outcomes from the IMpassion 130 study, which looked at chemotherapy for metastatic triple-negative disease plus the immunotherapy atezolizumab. And then, there was also an update on the results from the KEYNOTE-355 study, which was a study again of chemotherapy for metastatic triple-negative patients in combination with pembrolizumab, a different immunotherapy. And both of these studies showed that there was benefit for women in certain sub-groups of triple-negative breast cancer when looking at addition of immunotherapy.

And so, what I’d like to draw patients’ attention to with these presentations is that you have to be aware of if you fall into one of these categories so you know if you’re a candidate for the particular type of immunotherapy that can be added to chemotherapy. There are two different ways to test for if a patient is a candidate for immunotherapy and they are both tests that can be done on biopsies of metastatic or cancer recurrent sites in the body.

They can also be sent off of original breast cancer tumors. And what we now know is that for patients who do not have markers that suggest immune activation or where the immune system would be responsive to immunotherapy the addition of that extra therapy really does not help to improve cancer control over chemotherapy alone. And I think that’s a really important topic because everyone is very interested in immunotherapy, but it does have side effects of its own and it can actually be lasting side effects in terms of inflammation in organs like the liver, the colon, and the lungs.

And then, the third presentation that I’d like to bring up is the IPATunity study, which looked at the addition of a targeted therapy called ipatasertib to, again, chemotherapy for the first treatment of metastatic triple-negative disease.

And so, this is getting into an area of targeted therapy for metastatic triple-negative disease. And again, only looks at patients that have a particular marker that suggests sensitivity to this drug. And those are certain genetic markers, predominately changes in a DNA marker called PIK3CA. In this study, we actually found that there was no benefit for the targeted therapy added to chemotherapy for patients that had that genetic mutation, which was different than what was seen in earlier studies of the same combination. So, I think there’s more work to be done and it’s probably too early to say that this targeted therapy will not be used in treatment of metastatic breast cancer.

But what all of these research studies show together is that metastatic triple-negative cancer is not really just one disease. It’s very clear that within that one name, there are multiple different patient types and tumor types that need to be cared for differently.

And so, again, I think the theme from these abstracts and these research presentations is that we have to look into the right therapy for the right patient at the right time, which largely involved DNA-based testing.

So, when patients are thinking about their treatment options and how to best help with their providers about what treatment options exist for them, I think it’s important to recognize the type of testing that may be advantageous in your cancer type.

And so, for all metastatic breast cancer patients, we really recommend that they’ve had genetic testing to look for DNA changes like BRCA mutations that will lead to treatment options. For metastatic triple-negative disease, it’s important to make sure that you’re providers are testing for PDL1, which would make you a candidate for immunotherapy. And then, the more we learn about clinical trials, the more we have options for patients that have had drug-based DNA or genome-based testing. So, that’s an important term for patients to become familiar with is genomic testing.

And I think when you bring that up with your providers, they’ll know what you’re talking about and they’ll know that what you’re potentially interested in is new targeted therapy for the cancer that may either come in combination with chemotherapy or as a standalone treatment option. If you don’t have those options that are available, and FDA approved basis for regular routine patient care, there is always the option of clinical trials.

And so, if that is something that you’re interested in, genomic testing will often open the way. So, I think as you’re writing notes when you’re talking to your providers, you might wanna jot down whether or not you’ve had genetic testing and whether or not you’ve had genomic testing in the past, as both of those things will help potentially address all of your treatment options.

I’ve very hopeful about the research that is going to lead to new developments for breast cancer treatment in the next few years.

I think what we’ve seen both at this San Antonio Breast Cancer Symposium as well as other conferences in the recent past has been a lot of focus on finding the right treatment for the right patient at the right time. And so, patients seem to be very interested in finding out this information. They often come to clinic armed with the most recent data, which allows their providers to have really informed discussions about what the best treatment might be. And to talk about if the new treatments are not great right now, what treatments might look like in the future.

I think the other thing that’s encouraging about the research that we’ve seen presented at this conference is that some of these trials are very, very large. For example, the RxPONDER trial was a trial of over 9,000 patients. And I really think that’s amazing to get that many patients interested in research that may not directly impact their patient care but will impact the care of others moving forward.

It’s just a sign that our breast cancer patients are empowered, and they want to make a difference in the scientific community as a whole.

 

Confusing CLL Terms Defined

Confusing CLL Terms Defined from Patient Empowerment Network on Vimeo.

What is FISH testing? What is IGHV? Physician assistant Danielle Roberts explains the meaning of these often confusing terms and their role in disease monitoring and CLL treatment decisions.

Danielle Roberts is a physician assistant with the Bone Marrow Stem Cell Transplant (BMT) team at Winship Cancer Institute at Emory University. Learn more here.

See More From INSIST! CLL


Related Resources

 
Practical Advice for Coping with a CLL Diagnosis: What’s Next?

Practical Advice for Coping with a CLL Diagnosis: What’s Next?

Could CLL Be Inherited?

Could CLL Be Inherited?

What Should You Know About CLL Genetic Testing?

 

Transcript:

Danielle Roberts:    

So, a FISH test is a test from your either blood in your bloodstream or from your bone marrow biopsy. And it stands for florescence in situ hybridization. And this is a highly specific test that looks at the chromosomal changes with CLL. This can be done in the peripheral blood or in the bone marrow.

And it’s important to remember that when we consider genetic testing and CLL, we aren’t talking about inherited genes, but the abnormalities that occur within the CLL itself.

So, an IGHV test is a mutational test that stands for the immunoglobulin heavy-chain variable gene locus. This can also be done in the peripheral blood and the bone marrow biopsy. This test can help us determine treatment options as well as help with determining what high-risk features there are for your particular disease.

So, 17p deletion is the deletion of the long arm of chromosome 17. This can be seen at initial diagnosis or it can be acquired later on in disease progression. So, for all patients this is one of the more important tests that if you’re going to ask your doctor if you’ve had, you should ask at a diagnosis. If you’ve relapsed later on, you should ask again if that mutational status is being observed or checked in your follow-up testing.

17p deletion is something that can be acquired along the course of your disease progression. It is not always seen at initial diagnosis but can be acquired if you are relapsed or refractory. Therefore I recommend that every time you’re having peripheral blood for flow or if you’re having bone marrow biopsies, especially if it’s for treatment planning purposes, you should advocate to your physician team to make sure that this test is being performed as it will drive – or as it can drive treatment decision-making.

Practical Advice for Coping with a CLL Diagnosis: What’s Next?

Practical Advice for Coping with a CLL Diagnosis: What’s Next? from Patient Empowerment Network on Vimeo.

After receiving a diagnosis of chronic lymphocytic leukemia (CLL), patients can have a variety of concerns. Physician assistant Danielle Roberts shares her top three pieces of practical advice for patients to move forward. 

Danielle Roberts is a physician assistant with the Bone Marrow Stem Cell Transplant (BMT) team at Winship Cancer Institute at Emory University. Learn more here.

See More From The Pro-Active CLL Patient Toolkit


Related Resources

 
Confusing CLL Terms Defined

Confusing CLL Terms Defined

What Is YOUR Role in CLL Treatment Decisions?
What Is YOUR Role in CLL Treatment Decisions? 
Targeted CLL Therapy: What Are the Side Effects?
Targeted CLL Therapy: What Are the Side Effects?

Transcript:

Danielle Roberts:       

My recommendations if I could have three things that I would recommend all patients with CLL do, 1.) It would be to have your financial information kind of in line or know how to find that. Unfortunately, a lot of the medications that we use to treat disease are incredibly expensive. However, there are really good patient assistance programs out there. In order to be able to apply for patient assistance programs you do have to submit your financial information to them. So, I would really suggest that you have access or be able to know where to find that.

I would also really recommend you talk to your family members in so that they understand what’s – where you are with your treatment and what’s going on. As a physician’s assistant, one of the questions I generally get is when they bring in a family member or somebody who has not been along in their journey for their treatment, if they’re asking lots of questions, that was and kind of diagnosis. So, I encourage people to talk about that at the beginning, so everybody understands where they are and what the plan for the future is going to be.

And then the last thing that I always recommend to everybody is to understand that not one treatment is right for everybody. Understand that things are going to change and we’re all going to grow and we’re going to learn with the process. But if you don’t tell your healthcare team what’s going on, we can’t help you. And we say that there is no such thing as a bad question to us. You’re never bothering us. That’s what we’re here for. Rather you tell us, even if it may be something you feel is minor, ahead of time so that we can address it and work towards a solution, if there needs to be one.

How Could Emerging CLL Treatments Impact Your Care?

How Could Emerging CLL Treatments Impact Your Care? from Patient Empowerment Network on Vimeo.

In the changing world of chronic lymphocytic leukemia (CLL) research, how can emerging treatments impact care for patients? Dr. Jennifer Woyach shares information about targeted therapies, immunotherapy and clinical trials, and explains why she is hopeful about the future of CLL care.

Dr. Jennifer Woyach is a hematologist-oncologist specializing in chronic lymphocytic leukemia (CLL) at Ohio State’s Comprehensive Cancer Center – James Cancer Hospital & Solove Research Institute. Find out more about this expert here. 

See More From INSIST! CLL


Related Resources

 

What Does It Mean to Have High-Risk CLL?

What Is YOUR Role in CLL Treatment Decisions?

Could CLL Be Inherited?

 

Transcript:

Katherine:                  

That’s a good point. Are there emerging treatments patients should know about?

Dr. Woyach:               

Yeah. There are a lot of really exciting things going on in CLL right now. And CLL is a disease that has been completely transformed in the last five to 10 years and is poised to do so again. So, I mentioned these therapies that we use for frontline treatment, and there are clinical trials now combining them together. So, these agents work so well on their own. Are they going to be even better if we add them together?

There are also newer target therapies, different targets that we are finding increasingly important in CLL, as well as a modality called CAR-T cells, which most people have heard of where we take patients’ own T cells, modify them in the lab and then, give them back with a goal of getting those cells engineered to kill CLL cells.

These are all things that are not ready for prime time in CLL yet but are available in clinical trials. And I think one other thing I’d really like to put a plug in for is clinical trials in CLL, because right now we’re at a point where our therapies are really very good. But if people just do those treatments, we are never going to figure out which one is the best or figure out, for specific types of patients, which treatment is the best. And so, I advocate that any of my patients that are eligible for clinical trials should consider them, because that’s how we make progress in the disease from an altruistic sense.

That’s how we make things better for everybody. That’s one way a patient can think about it. But more personally than that, being in a clinical trial gives somebody the opportunity to get a treatment that they otherwise wouldn’t get that might be better than our standard of care therapies.

Katherine:                  

Dr. Woyach, as a researcher in the field, why are you hopeful?

Dr. Woyach:               

I am so hopeful in CLL because there is so much that we’re learning every day about the biology of the disease, about specific mutations and other genetic factors that are important and really can be targeted by new drugs. Paralleling our understanding of the disease, there also are many more techniques to make these targeted therapies that kill cancer cells selectively while sparing normal cells and making our drugs even more tolerable.

And I think both the targeted therapies like this and the potential of combining them, figuring out sequences that are best but then, also these newer modalities where we, actually, get the immune system involved like the CAR-T cells. They’re making CAR NK cells now. And just lots of other strategies that could be used together with targeted therapies to, hopefully, cure the disease.

Targeted CLL Therapy: What Are the Side Effects?

Targeted CLL Therapy: What Are the Side Effects? from Patient Empowerment Network on Vimeo.

What are common side effects of chronic lymphocytic leukemia (CLL) targeted therapies? Dr. Jennifer Woyach discusses side effects of specific targeted therapies and the importance of reporting any issues to your doctor for optimal quality of life.

Dr. Jennifer Woyach is a hematologist-oncologist specializing in chronic lymphocytic leukemia (CLL) at Ohio State’s Comprehensive Cancer Center – James Cancer Hospital & Solove Research Institute. Find out more about this expert here. 

See More From INSIST! CLL


Related Resources

 

What Should You Know About CLL Genetic Testing?

What Tests Should CLL Patients Insist They Receive?

Could CLL Be Inherited?

 

Transcript:

Katherine:                  

If there are side effects, what would some of the side effects be for these targeted therapies?

Dr. Woyach:               

So, it depends on the drug. So, BTK inhibitors, specifically, ibrutinib can cause some joint and muscle pain, some rashes, diarrhea, heartburn. Those are things that tend to, if they’re going to happen, usually happen earlier on in treatment and tend to get better over time. It can also cause high blood pressure. It can cause an abnormal heart rhythm called atrial fibrillation.

So, those are things we watch out for with ibrutinib. Acalabrutinib really has all of the same side effects but for many of them, they don’t occur as often. And then, the tradeoff there is ibrutinib is given once a day and acalabrutinib is given twice a day. With venetoclax plus obinutuzumab with that regimen, you get a lot more hematologic toxicity. So, you see more lowering of the good white blood cell count, which is, obviously, a risk for infections. That regimen comes with a risk of something called tumor lysis syndrome, which is where the cells can break down too quickly and cause damage to the kidneys, damage to the heart.

It can also cause some GI disturbance like some diarrhea, nausea, abdominal pain, things like that. I see there are a lot of side effects. And, of course, when I’m talking to a patient about treatment, we go over them in more detail than that. But I think the important thing is with all of these therapies, we do have ways to manage these side effects.

One thing I think is important for patients to remember is your doctor doesn’t know you’re having side effects unless you tell them. So, we know that people have these side effects. But if you don’t tell us that you’re having diarrhea or heartburn or things like that, we can’t help with it. And we have a lot of medicines that can help these things.