What Are Common Follicular Lymphoma Treatment Side Effects?

What might follicular lymphoma patients experience for treatment side effects? Expert Dr. Brad Kahl from Washington University School of Medicine discusses common treatment side effects that patients might experience, some methods for dealing with side effects, and other precautions to help ensure optimal patient care. 

Download Resource Guide | Descargar Guía

See More from START HERE Follicular Lymphoma

Related Resources:

Defining Survivorship for Relapsed/Refractory Follicular Lymphoma

Defining Survivorship for Relapsed/Refractory Follicular Lymphoma

Addressing Vulnerabilities in Follicular Lymphoma

Addressing Vulnerabilities in Follicular Lymphoma

Why Does Follicular Lymphoma Relapse for Some Patients?

Why Does Follicular Lymphoma Relapse for Some Patients?


Transcript:

Lisa Hatfield:

What are the common side effects of the recommended treatments in newer therapies? And a really important question. Are there long-term side effects that I should be aware of or that a patient should be aware of?

Dr. Brad Kahl:

Yeah, the side effects are going to be different for all the different new agents that I mentioned. With the bispecific monoclonal antibodies, there’s a little bit of risk for something called cytokine release syndrome. When you’re first starting on the drug, sometimes the drugs are really potent at activating the patient’s immune system. And as that immune system is getting revved up, the immune system will release chemicals or cytokines, which can give you fevers and make you feel like you have the flu. It’s just your immune system responding.

And so that’s something that we have to watch for as we’re starting a bispecific, that’s usually a short-term problem. And it’s usually pretty easily managed with steroids or other drugs that can tamp down the immune system. And then once you’re past that risk for cytokine release syndrome, the bispecifics usually go pretty smooth, but the bispecifics do deplete your body of healthy B cells in addition to the follicular lymphoma cells.

So they do weaken the patient’s immune system some, and I’d say that’s the biggest risk that we have to worry about in patients getting a lot of these different treatments is just what it does to your immune system. And so we’re always telling patients to call us if you get a fever, infections in a patient on treatment can become a big deal. And that’s why we want those phone calls so we can figure out if you need to get seen, if you need to go to an emergency room, if we need to start on broad spectrum antibiotics immediately, if we need to bring in for fancy testing, because sometimes people can get kind of oddball or rare infections. 

So infections, infections, infections are the things we worry about the most with most of the treatments that we give to people with relapsed follicular lymphoma. That’s true of the CAR T-cell products, cytokine release syndrome. We also have to worry about some neurologic toxicity that can happen if that happens, that’s going to occur while the patient’s in the hospital with us getting those treatments. But again, these drugs will deplete the immune system for months and months, maybe even a year, maybe longer. So we have to just be super careful about infections in patients getting these different treatments that I mentioned today.


Share Your Feedback

How Do Outcomes for Relapsed/Refractory Follicular Lymphoma Vary?

How do relapsed/refractory follicular lymphoma outcomes differ? Expert Dr. Brad Kahl from Washington University School of Medicine discusses response of initial treatment versus relapsed disease in the past and the results with newer treatments for relapsed disease.

Download Resource Guide | Descargar Guía

See More from START HERE Follicular Lymphoma

Related Resources:

Addressing Vulnerabilities in Follicular Lymphoma

Addressing Vulnerabilities in Follicular Lymphoma

What Are Common Follicular Lymphoma Treatment Side Effects?

What Are Common Follicular Lymphoma Treatment Side Effects?

Defining Survivorship for Relapsed/Refractory Follicular Lymphoma

Defining Survivorship for Relapsed/Refractory Follicular Lymphoma


Transcript:

Lisa Hatfield:

Another question, Dr. Kahl. How do outcomes differ for patients with relapsed/refractory disease compared to those who respond well to initial treatment?

Dr. Brad Kahl:

So that’s a really good question. And when we have a patient going through frontline treatment, we’re all really crossing our fingers that that first remission is incredibly durable. Because when the disease relapses, the remissions do tend to get shorter and shorter and shorter, which is frustrating for everybody.And so we love it when we get a nice long first remission. And in the older days when all we had to offer was chemotherapy and some different immunochemotherapy regimens, the remissions in second line and third line might be two years or one year. 

It can get frustrating as you go through treatment after treatment after treatment. It’s hard on patients. The side effects start to accumulate. And that’s one of the reasons we’re so excited about all these new agents that we have for relapsed disease with the bispecifics and the CAR T products and the small molecule inhibitors like tazemetostat (Tazverik) and zanubrutinib (Brukinsa). Because it appears as though these remissions for relapsed disease might be getting longer than what we have seen historically. So there’s no question that dealing with relapsed follicular lymphoma is more difficult than dealing with frontline follicular lymphoma. But we’re optimistic that these newer treatments we have are improving outcomes for patients with relapsed disease.


Share Your Feedback

How Might Follicular Lymphoma Research Innovations Help With Remissions?

How can follicular lymphoma remissions possibly be helped by innovations? Expert Dr. Brad Kahl from Washington University School of Medicine discusses drugs and treatment scenarios currently under study for relapsed follicular lymphoma. 

Download Resource Guide | Descargar Guía

See More from START HERE Follicular Lymphoma

Related Resources:

What Is Follicular Lymphoma Exactly?

What Is Follicular Lymphoma Exactly?

Newly Diagnosed Follicular Lymphoma and Treatment Options

Newly Diagnosed Follicular Lymphoma and Treatment Options

Emerging Therapies in Relapsed Follicular Lymphoma: What’s Next?

Emerging Therapies in Relapsed Follicular Lymphoma: What’s Next?


Transcript:

Lisa Hatfield:

How might future innovations build on the latest treatments to offer even better outcomes for patients? You, I think maybe have touched on that, but maybe speak to that a little bit more as far as longer remissions.

Dr. Brad Kahl:

Right, right. So I think right now the main emphasis in research is to take some of these really promising drugs that were developed for relapsed follicular lymphoma and do two things with them, test them in combinations in the relapsed setting to see if you can make them even more active. So an example of that would be take the drug lenalidomide (Revlimid), which is really active in the relapse setting and pair it with the drug mosunetuzumab-axgb (Lunsumio), which is very active in the relapsed setting, and pair them together and see if you can get better results than either drug alone.

So there are studies trying to answer questions like that at this time. And then the other area of major interest is to take these promising new treatments approved in the relapsed setting and test them upfront. So there are studies being literally designed right now as we speak that will test bispecific monoclonal antibodies in the frontline setting.

So patients can envision being offered a chance to have a chemo-free strategy where they’re just getting a bispecific monoclonal antibody as their initial treatment. And there are studies that will test these drugs as single agents, and there are studies that will test these drugs in combinations with other agents in the frontline setting, like lenalidomide, for example. So we have no results from any of these trials yet, but these trials are just starting to enroll patients and this could fundamentally change the way we’re managing follicular lymphoma in the future if any of these new strategies turn out to be more promising than what we have done historically.


Share Your Feedback

Emerging Therapies in Relapsed Follicular Lymphoma: What’s Next?

What’s the latest in relapsed follicular lymphoma treatment developments? Expert Dr. Brad Kahl from Washington University School of Medicine discusses immunotherapy, combination treatments, bispecific monoclonal antibodies, and the testing status of various therapies. 

Download Resource Guide | Descargar Guía

See More from START HERE Follicular Lymphoma

Related Resources:

What Is Follicular Lymphoma Exactly?

What Is Follicular Lymphoma Exactly?

Newly Diagnosed Follicular Lymphoma and Treatment Options

Newly Diagnosed Follicular Lymphoma and Treatment Options


Transcript:

Lisa Hatfield:

We have drugs that are oral, that are, we call them targeted agents, they hit like a molecular pathway inside the cell a lot, and they kill the cells a lot differently than chemotherapy does. And we have a number of new drugs that work through the immune system and try to attack the lymphoma that way.

Dr. Brad Kahl:  

So when we have patients who relapse, probably the most commonly used second-line treatment right now is a combination of a drug called lenalidomide (Revlimid), which is a pill that’s used in a few different cancers. It works very well for certain cancers, and it works well in follicular lymphoma. And that’s given with the immunotherapy drug called rituximab (Rituxan). And that was proven in a study to be very effective. About 80 percent of people will respond to the regimen, and that remission on average lasts in the two to three-year range.

So that’s probably the most commonly used second-line regimen right now in the U.S. for follicular lymphoma. And then there are a number of treatments that are now available in third-line and beyond that are new within the past, say three, four years. And these newer treatments that I’m about to describe are now being tested as second-line treatments and even as first-line treatments.

So it’s possible that some of these treatments I’m about to describe will become in the future, our go to regimens for first-line treatment or second-line treatment. And we hope they do move up, because that means they’re, it means they’re even better than what we’ve been using. So probably the treatments that we’re most excited about right now in follicular lymphoma are the drugs called bispecific monoclonal antibodies.

There are two that are now FDA-approved. One’s called mosunetuzumab-axgb (Lunsumio), and that was approved about a year-and-a-half ago. And the other one’s called epcoritamab-bysp (Epkinly), and that was approved just a month ago. And basically these drugs are infused or injected under the skin, infused intravenously injected under the skin and their proteins that will literally stick to the lymphoma cells. And when it does that, it kind of coats the cancer cells. And then after these bispecific antibodies coat the tumor cells, they literally will trick the patient’s T cells or healthy T cells to come in and attack the cancer.

So it’s a way of trying to trick the patient’s own immune system to come in and start fighting the cancer. And these two drugs are very promising in the relapsed setting. They work about 80 percent of the time to get some kind of response. About 60 percent of the time patients will go into complete remission, which means we can’t find any evidence for the lymphoma on scans. And they’re both so new that I don’t think we have a full understanding of how durable these remissions are going to be right now.

It looks that like about, if you do get a complete remission, that about half of those patients are holding that complete remission at two and three years. But we’re, we don’t know about four years and five years yet because the drugs are too new. And we expect that if, as these drugs move up and are tested in the second-line setting and in the first-line setting, they’ll work even better because the cancer cells tend to be easier to kill in earlier lines of therapy. Other agents that have moved into the relapsed follicular lymphoma space would include CAR T-cell therapy.

This is a fairly sophisticated complicated approach where you actually will run the patient’s blood through apheresis machine and you will extract the patient’s T cells and those T cells get genetically modified in a lab and then expanded and then are shipped back to the center and then re-infused back into the patient. So now again, we’re tricking the patient’s T cells into fighting their B-cell lymphoma.

And there are three CAR T products that are now FDA approved for use in follicular lymphoma, and they have very high response rates. With seemingly good durability we’re now getting three and four-year follow-up for these CAR T products with about half of people still in remission. The CAR T products probably have a little more toxicity and a little more risk than the bispecifics. So I think most of us are thinking we would try the bispecifics before CAR T, but there might be certain patients where a CAR T strategy is more appropriate to use before a bispecific.

So we’re very excited to have these tools in our toolbox. It’s always good to have more options. And then I should just mention the small molecule inhibitors. So here’s an example. Just this past year there was approval for a small molecule called zanubrutinib (Brukinsa). It targets an enzyme called BTK or Bruton’s tyrosine kinase. This is a pill really well tolerated. It’s given in a combination with an immunotherapy drug called obinutuzumab (Gazyva).

This zanubrutinib-obinutuzumab combination got FDA-approved just this year for recurrent follicular lymphoma. The results look very good for that. It’s very well-tolerated. There’s another oral agent called tazemetostat (Tazverik), which was approved a couple of years ago. It targets a mutated protein in follicular lymphoma. This is, again, is a pill super well-tolerated, very few side effects. So, there’s just a few examples for you of all the different treatment options we have for follicular lymphoma that has recurred after initial treatment.

And believe it or not, the decision-making can be difficult when you have so many choices and so many good choices, that’s a good problem to have. And I find myself a lot of times spending a lot of time with the patient and their family as we talk through these different options, and we try to think what’s best for them at this point in time, talking through the pros and the cons, how active it is, what side effects do we need to be concerned about. And it’s a lot for patients to digest when you have so many choices. But like I mentioned that’s actually a good problem to have.

Lisa Hatfield:

I think you’re right. There’s a lot of hope in those options. I do have two follow-up questions. One of them is when you talk about lenalidomide or brand name Revlimid, CAR T bispecific antibodies, this new small molecule, are these all quality of life is so important for cancer patients. Are these all limited duration treatments for recurrent disease when there’s a recurrence of the disease, or are they long-term treatments for the disease?

Dr. Brad Kahl:

Yeah, really good question. And the answer is different for every agent. So I’ll try to just kind of run through the list. For the CAR T products, the three different CAR T products, it’s like a one-time treatment and then you’re done because the cells that get infused will persist in the patient’s body for months and months and months. So they’re infused and then the cells will hang around a long time acting on the cancer. So for the CAR T it’s a one-time treatment. For the bispecifics, the mosunetuzumab-axgb product is a time-limited treatment that is done in less than a year. The epcoritamab-bysp is designed to be given indefinitely.

So those are, there are some pros and cons of those two agents, the two small molecules that I mentioned, the zanubrutinib is meant to be given indefinitely and the tazemetostat is meant to be given indefinitely. And then the first one I mentioned was the lenalidomide. That is in follicular lymphoma that it was developed to be given for 12 months in this setting. So the duration of therapy is unique for each of the different agents that I mentioned.


Share Your Feedback

Newly Diagnosed Follicular Lymphoma and Treatment Options

What are the approaches to newly diagnosed follicular lymphoma and treatment options? Expert Dr. Brad Kahl from Washington University School of Medicine discusses common follicular lymphoma symptoms, patients who experience no symptoms, watch and wait, and follicular lymphoma treatment options.

Download Resource Guide | Descargar Guía

See More from START HERE Follicular Lymphoma

Related Resources:

What Is Follicular Lymphoma Exactly?

What Is Follicular Lymphoma Exactly?

Emerging Therapies in Relapsed Follicular Lymphoma: What’s Next?

Emerging Therapies in Relapsed Follicular Lymphoma: What’s Next?


Transcript:

Lisa Hatfield:

So, Dr. Kahl, you also mentioned treatments and how oftentimes it’s not a cancer where you can just remove the cancer. Can you talk about some of the exciting developments with treatments and new innovative therapies, and what are the most important highlights for patients and families?

Dr. Brad Kahl:

Yeah. There’s a lot to talk about here. So I’ll start with how we approach a newly diagnosed patient, and then we’ll go into how we approach patients who have relapsed disease. So the most often, or the most common way a follicular lymphoma patient comes to medical attention is they just either notice a lump from an enlarging lymph node, or some enlarged lymph nodes are just found incidentally, because they’re having some testing for some other condition.

And so, like I said, very often patients don’t have symptoms. That’s very typical. Occasionally, the patients will have symptoms, and those symptoms might be pain from a large lymph node mass that’s pushing on something. Occasionally, they might have fevers or night sweats. They wake up in the middle of the night just drenching wet, or unexplained weight loss. Those would be symptoms that can occur in follicular lymphoma. But most patients who come to see us for the first time don’t have symptoms.

When we have a newly diagnosed patient and it takes a biopsy to make the diagnosis, we then need to do the staging evaluation. So that involves some sort of imaging. And nowadays that’s usually in the form of what’s called a PET scan, which gives us a good snapshot of the whole body. And it’ll show us enlarged lymph nodes. And then the PET portion of the scan will show us if the lymph nodes are metabolically more active.

So they show up as these bright spots on the PET scan. And that’s what allows us to stage the patient. It tells us where the disease is located and how much of the disease we see. And so I’m often telling patients, I don’t worry so much about the stage. I worry more about the disease burden. So the way I explain that to patients is, suppose I could take all the follicular lymphoma cells out of your body, and I made a pile. How big is the pile? And that’s actually, I think, more important than the stage in determining our initial strategy.

Because believe it or not, if we have a patient who comes to us with a new diagnosis of follicular lymphoma and they have no symptoms, and it turns out that their tumor burden is very low, we often will recommend an initial approach of no treatment, which is a strange thing for patients to hear. And we spend a lot of time trying to explain the rationale for that. So I’ll try to explain that to you now. Follicular lymphoma is hard to cure. So it’s this weird cancer in that it’s slow-moving. It often doesn’t make people sick, and we have good treatments for it, but curing it, like making it go away once and for all, proves to be kind of difficult.

And studies in the past have shown if you have a patient who has no symptoms and is low tumor burden, that their prognosis is just as good if you leave them alone at the beginning. And many patients will not need any treatment at all for two years, three years, five years. I even have follicular lymphoma patients who I’ve been observing for more than 10 years that have never needed any treatment.

About two out of every 10 patients that are newly diagnosed can go 10 years without needing any treatment. So that’s why we’ll start that strategy for some patients. And that psychologically can be difficult for patients. You’re telling me I’ve got a new cancer diagnosis. You’re saying you have good treatments for it. And yet you’re saying you don’t want to use any of those treatments. And so it takes a lot of talking and explaining to try to get people comfortable with that.

Some people never get comfortable with that, I admit it. But some people get very comfortable with it. But it is a very appropriate initial strategy for a low tumor burden asymptomatic person just to observe and get a handle on the pace of the disease. If the disease starts to grow, or if the patient starts to get symptoms, we can start our treatment at that time. And the treatment is going to work just as well as it would have had if we started it last year, or two years ago.

So we feel like we’re putting the patient in no harm, no risk of harm by starting on this strategy of a watch and wait. On the other hand, some patients have high tumor burden, they have a lot of disease, or they have symptoms. And for those patients we need to start them on treatment, because the treatment can put them in remission and get them feeling better. Right now, the most common frontline treatment in follicular lymphoma will be a combination of some chemotherapy and some immunotherapy.

The most commonly used regimen in the United States right now is a two drug regimen, a chemotherapy drug called bendamustine (Treanda), and an immunotherapy drug called rituximab (Rituxan). And you give that treatment every 28 days for six months. And it’ll put 90 percent of people into remission. And on average, those remissions last five-plus years. And it’s a very, very tolerable treatment. It’s not too bad as far as chemotherapy goes. There’s no, most people don’t lose their hair. They don’t get peripheral neuropathy that sometimes chemotherapy drugs give.

It’s not too bad for nausea and things like that. I’m not saying it’s easy or it’s fun. It’s none of that. But as far as chemo goes, it’s not too bad. And it’s effective, it is very effective. And I’ve given that treatment, and I have people who are still in their first remission 10 years later, so you can get, for some people can get these really long remissions. 


Share Your Feedback

What Is Follicular Lymphoma Exactly?

What’s vital for patients to know about follicular lymphoma? Expert Dr. Brad Kahl from Washington University School of Medicine discusses non-Hodgkin lymphoma versus Hodgkin lymphoma and how follicular lymphoma occurs and progresses.

Download Resource Guide | Descargar Guía

See More from START HERE Follicular Lymphoma

Related Resources:

Newly Diagnosed Follicular Lymphoma and Treatment Options

Newly Diagnosed Follicular Lymphoma and Treatment Options

Emerging Therapies in Relapsed Follicular Lymphoma: What’s Next?

Emerging Therapies in Relapsed Follicular Lymphoma: What’s Next?

 

Transcript:

Lisa Hatfield:

I‘d like to start with a brief overview of this disease. What is follicular lymphoma? And can you break it down a little bit, the key differences between Hodgkin and non-Hodgkin lymphoma and how follicular lymphoma fits into that?

Dr. Brad Kahl:

Sure. The terminology can be kind of confusing to patients, so I’ll try to explain it. Hodgkin lymphoma is a specific kind of lymphoma. Non-Hodgkin’s lymphoma just means it’s not Hodgkin’s. So non-Hodgkin’s lymphoma is just a big, broad, descriptive term. It’s like saying automobile. But there are lots of different kinds of cars, obviously. So follicular lymphoma is a specific type of non-Hodgkin’s lymphoma. So it’d be like saying Chevy Malibu or something specific within that automobile term. So there are like 100 different kinds of non-Hodgkin’s lymphoma. Follicular lymphoma is one of those.

And it’s kind of a unique answer biologically and clinically. Follicular lymphoma is characterized by this particular mutation inside the cells that sends a signal to the cells that says don’t die. So instead of being a disease of rapid cellular proliferation and growth, it’s more of a disease of slow cellular accumulation. If people can picture that, the cells are just accumulating slowly. So it’s kind of a slow-moving cancer. And probably when patients are diagnosed, they’ve probably had it for a long time already.

They just didn’t know it, because follicular lymphoma often doesn’t cause symptoms. And usually when we get a patient with newly diagnosed follicular lymphoma, the disease is very widespread. And that obviously makes people fearful. And so we spend a lot of time trying to reassure them that’s not a problem that’s typical for follicular lymphoma. Everybody wants to know their stage, of course. And I try to tell them, the stage doesn’t really matter that much in follicular lymphoma.

In some cancers, the stage is a big deal. But those are cancers that you can kind of remove surgically. But there’s really no role for surgery as a treatment in follicular lymphoma. The disease is typically very widespread in diagnosis, meaning it’s all over the body. And so when we do treat it, we pick treatments that will work everywhere. And our treatments tend to work just as well when the disease is at a more advanced stage. That’s why as the doctors, we don’t spend too much time worrying about the stage. It’s just not, it’s not as important in follicular lymphoma.

Lisa Hatfield:

And just to clarify, when you mentioned that there is a mutation or often mutations in follicular lymphoma, is that in the cancer cells themselves, or is that in a mutation, like a BRCA mutation that a patient can be tested for? I presume it is.

Dr. Brad Kahl:

Right. That’s a great question. The mutation is specific to the cancer cells. So people are not born with this mutation. It’s not a mutation that you pass along in your family to children. It’s a mutation that is acquired in these cells at some point in the patient’s lifetime. Another confusing term is this whole idea of B-cell lymphoma or T-cell lymphoma.

And just to try to clarify that. So we have different kinds of lymphocytes in our body, and these lymphocytes, they have jobs to do as part of our immune system. And one kind of lymphocyte is a T cell, and that has specific roles in our immune system. And another kind is a B cell, and that has specific jobs to do in our immune system. Follicular lymphoma is derived from a B cell, a B-cell lymphocyte. So the…a B cell gets this mutation, and that turns it from a normal healthy B cell into a follicular lymphoma cell.


Share Your Feedback

Follicular Lymphoma Patient Expert Q&A: Dr. Brad Kahl

 

Dr. Brad Kahl from Washington University School of Medicine explores the transformative potential of emerging therapies for follicular lymphoma and their significance for patients and families. He also addresses the unique challenges of living with follicular lymphoma and its impact on patients’ lives today.

Download Resource Guide | Descargar Guía

See More from START HERE Follicular Lymphoma

Related Resources:

What’s the News on Follicular Lymphoma and Bispecific Antibodies

What Should Follicular Lymphoma Patients Know About Remission

What Can Follicular Lymphoma Patients Expect With Remission


Transcript:

Lisa Hatfield:

Welcome to this START HERE Patient Empowerment Network program. This program bridges the expert and patient voice, enabling patients and care partners to feel comfortable asking questions of their health care team. Joining me today is hematologist-oncologist Dr. Brad Kahl, Professor of Medicine in the Division of Oncology at the Washington University School of Medicine and Director of the lymphoma program at the Alvin J. Siteman Cancer Center in St. Louis, Missouri. Thank you so much for joining us, Dr. Kahl.

Dr. Brad Kahl:

It’s a pleasure. Thanks for having me, Lisa.

Lisa Hatfield:  

The world is complicated, but understanding your follicular lymphoma diagnosis and treatment options along your journey doesn’t have to be. The goal of Start Here is to create actionable pathways for getting the most out of your follicular lymphoma treatment and survivorship. No matter where you are on your journey, this program is designed to provide easy to understand, reliable, and digestible information to help you make informed decisions. And most of all, we’re asking questions from you. I’m thrilled you’ve joined us.

Please remember to download the program resource guide via the QR code. There is great information there that will be useful during this program and after. Let’s start here. Dr. Kahl, there is a great deal going on in the follicular lymphoma landscape, and I want to dig into that. But before we do, as is custom for this program, I’d like to start with a brief overview of this disease. What is follicular lymphoma? And can you break it down a little bit, the key differences between Hodgkin and non-Hodgkin lymphoma and how follicular lymphoma fits into that?

Dr. Brad Kahl:

Sure. The terminology can be kind of confusing to patients, so I’ll try to explain it. Hodgkin lymphoma is a specific kind of lymphoma. Non-Hodgkin’s lymphoma just means it’s not Hodgkin’s. So non-Hodgkin’s lymphoma is just a big, broad, descriptive term. It’s like saying automobile. But there are lots of different kinds of cars, obviously. So follicular lymphoma is a specific type of non-Hodgkin’s lymphoma. So it’d be like saying Chevy Malibu or something specific within that automobile term. So there’s like 100 different kinds of non-Hodgkin lymphoma. Follicular lymphoma is one of those. A

nd it’s kind of a unique answer biologically and clinically. Follicular lymphoma is characterized by this particular mutation inside the cells that sends a signal to the cells that says don’t die. So instead of being a disease of rapid cellular proliferation and growth, it’s more of a disease of slow cellular accumulation. If people can picture that, the cells are just accumulating slowly. So it’s kind of a slow-moving cancer. And probably when patients are diagnosed, they’ve probably had it for a long time already.

They just didn’t know it, because follicular lymphoma often doesn’t cause symptoms. And usually when we get a patient with newly diagnosed follicular lymphoma, the disease is very widespread. And that obviously makes people fearful. And so we spend a lot of time trying to reassure them that’s not a problem that’s typical for follicular lymphoma. Everybody wants to know their stage, of course. And I try to tell them, the stage doesn’t really matter that much in follicular lymphoma. In some cancers, the stage is a big deal. But those are cancers that you can kind of remove surgically.

But there’s really no role for surgery as a treatment in follicular lymphoma. The disease is typically very widespread in diagnosis, meaning it’s all over the body. And so when we do treat it, we pick treatments that will work everywhere. And our treatments tend to work just as well when the disease is at a more advanced stage. That’s why as the doctors, we don’t spend too much time worrying about the stage. It’s just not, it’s not as important in follicular lymphoma.

Lisa Hatfield:

Okay. Thank you. And just to clarify, when you mentioned that there is a mutation or often mutations in follicular lymphoma, is that in the cancer cells themselves, or is that in a mutation, like a BRCA mutation that a patient can be tested for? I presume it is.

Dr. Brad Kahl:

Right. That’s a great question. The mutation is specific to the cancer cells. So people are not born with this mutation. It’s not a mutation that you pass along in your family to children. It’s a mutation that is acquired in these cells at some point in the patient’s lifetime. Another confusing term is this whole idea of B-cell lymphoma or T-cell lymphoma.

And just to try to clarify that. So we have different kinds of lymphocytes in our body, and these lymphocytes, they have jobs to do as part of our immune system. And one kind of lymphocyte is a T cell, and that has specific roles in our immune system. And another kind is a B cell, and that has specific jobs to do in our immune system. Follicular lymphoma is derived from a B cell, a B-cell lymphocyte. So the…a B cell gets this mutation, and that turns it from a normal healthy B cell into a follicular lymphoma cell.

Lisa Hatfield:  

Okay. Thank you for explaining that and for that overview. That’s really helpful. I appreciate that. So, Dr. Kahl, you also mentioned treatments and how oftentimes it’s not a cancer where you can just remove the cancer. Can you talk about some of the exciting developments with treatments and new innovative therapies, and what are the most important highlights for patients and families?

Dr. Brad Kahl:

Yeah. There’s a lot to talk about here. So I’ll start with how we approach a newly diagnosed patient, and then we’ll go into how we approach patients who have relapsed disease. So the most often, or the most common way a follicular lymphoma patient comes to medical attention is they just either notice a lump from an enlarging lymph node, or some enlarged lymph nodes are just found incidentally because they’re having some testing for some other condition.

And so, like I said, very often patients don’t have symptoms. That’s very typical. Occasionally, the patients will have symptoms, and those symptoms might be pain from a large lymph node mass that’s pushing on something. Occasionally, they might have fevers or night sweats. They wake up in the middle of the night just drenching wet, or unexplained weight loss. Those would be symptoms that can occur in follicular lymphoma. But most patients who come to see us for the first time don’t have symptoms.

When we have a newly diagnosed patient and it takes a biopsy to make the diagnosis, we then need to do the staging evaluation. So that involves some sort of imaging. And nowadays that’s usually in the form of what’s called a PET scan, which gives us a good snapshot of the whole body. And it’ll show us enlarged lymph nodes. And then the PET portion of the scan will show us if the lymph nodes are metabolically more active.

So they show up as these bright spots on the PET scan. And that’s what allows us to stage the patient. It tells us where the disease is located and how much of the disease we see. And so I’m often telling patients, I don’t worry so much about the stage. I worry more about the disease burden. So the way I explain that to patient is, suppose I could take all the follicular lymphoma cells out of your body, and I made a pile. How big is the pile? And that’s actually, I think, more important than the stage in determining our initial strategy.

Because believe it or not, if we have a patient who comes to us with a new diagnosis of follicular lymphoma and they have no symptoms, and it turns out that their tumor burden is very low, we often will recommend an initial approach of no treatment, which is a strange thing for patients to hear. And we spend a lot of time trying to explain the rationale for that. So I’ll try to explain that to you now. Follicular lymphoma is hard to cure.

So it’s this weird cancer in that it’s slow-moving. It often doesn’t make people sick, and we have good treatments for it, but curing it, like making it go away once and for all, proves to be kind of difficult. And studies in the past have shown if you have a patient who has no symptoms and is low tumor burden, that their prognosis is just as good if you leave them alone at the beginning. And many patients will not need any treatment at all for two years, three years, five years. I even have follicular lymphoma patients who I’ve been observing for more than 10 years that have never needed any treatment.

About two out of every 10 patients that are newly diagnosed can go 10 years without needing any treatment. So that’s why we’ll start that strategy for some patients. And that’s psychologically can be difficult for patients. You’re telling me I’ve got a new cancer diagnosis. You’re saying you have good treatments for it. And yet you’re saying you don’t want to use any of those treatments. And so it takes a lot of talking and explaining to try to get people comfortable with that.

Some people never get comfortable with that, I admit it. But some people get very comfortable with it. But it is a very appropriate initial strategy for a low tumor burden asymptomatic person just to observe and get a handle on the pace of the disease. If the disease starts to grow, or if the patient starts to get symptoms, we can start our treatment at that time. And the treatment is going to work just as well as it would have had if we started it last year, or two years ago.

So we feel like we’re putting the patient in no harm, no risk of harm by starting on this strategy of a watch and wait. On the other hand, some patients have high tumor burden, they have a lot of disease, or they have symptoms. And for those patients we need to start them on treatment because the treatment can put them in remission and get them feeling better. Right now, the most common frontline treatment in follicular lymphoma will be a combination of some chemotherapy and some immunotherapy.

The most commonly used regimen in the United States right now is a two drug regimen, a chemotherapy drug called bendamustine (Treanda), and an immunotherapy drug called rituximab (Rituxan). And you give that treatment every 28 days for six months. And it’ll put 90 percent of people into remission. And on average, those remissions last five plus years. And it’s a very, very tolerable treatment.  It’s not too bad as far as chemotherapy goes. There’s no, most people don’t lose their hair. They don’t get peripheral neuropathy, that sometimes chemotherapy drugs give.

It’s not too bad for nausea and things like that. I’m not saying it’s easy or it’s fun. It’s none of that. But as far as chemo goes, it’s not too bad. And it’s effective, it is very effective. And I’ve given that treatment and I have people who are still in their first remission 10 years later, so you can get, for some people can get these really long remissions. But the reality is most patients, their disease does come back, they do relapse at some point. And then we have to start talking about what to do for second line treatment or third-line treatments.

And that’s where things have really taken off in follicular lymphoma in the last few years, there are a number of brand new treatment options in play for relapsed follicular lymphoma that are very exciting, and proves that we’re moving away from chemotherapy. We have drugs that are oral, that are, we call them targeted agents, they hit like a molecular pathway inside the cell a lot, and they kill the cells a lot differently than chemotherapy does. And we have a number of new drugs that work through the immune system, and try to attack the lymphoma that way.

So when we have patients who relapse, probably the most commonly used second-line treatment right now is a combination of a drug called lenalidomide (Revlimid), which is a pill that’s used in a few different cancers. It works very well for certain cancers, and it works well in follicular lymphoma. And that’s given with the immunotherapy drug called rituximab. And that was proven in a study to be very effective. About 80 percent of people will respond to the regimen, and that remission on average lasts in the two to three-year range.

So that’s probably the most commonly used second line regimen right now in the U.S. for follicular lymphoma. And then there are a number of treatments that are now available in third-line and beyond that are new within the past, say three, four years. And these newer treatments that I’m about to describe are now being tested as second line treatments and even as first-line treatments.

So it’s possible that some of these treatments I’m about to describe will become in the future, our go to regimens for first line treatment or second line treatment. And we hope they do move up, because that means they’re, it means they’re even better than what we’ve been using. So probably the treatments that we’re most excited about right now in follicular lymphoma are the drugs called bispecific monoclonal antibodies. There are two that are now FDA-approved. One’s called mosunetuzumab-axgb (Lunsumio), and that was approved about a year-and-a-half ago.

And the other one’s called epcoritamab-bysp (Epkinly), and that was approved just a month ago. And basically these drugs are infused or injected under the skin, infused intravenously injected under the skin and their proteins that will literally stick to the lymphoma cells. And when it does that, it kind of coats the cancer cells. And then after these bispecific antibodies coat the tumor cells, they literally will trick the patient’s T cells or healthy T cells to come in and attack the cancer.

So it’s a way of trying to trick the patient’s own immune system to come in and start fighting the cancer. And these two drugs are very promising in the relapse setting. They work about 80 percent of the time to get some kind of response. About 60 percent of the time patients will go into complete remission, which means we can’t find any evidence for the lymphoma on scans. And they’re both so new that I don’t think we have a full understanding of how durable these remissions are going to be right now.

It looks that like about, if you do get a complete remission, that about half of those patients are holding that complete remission at two and three years. But we’re, we don’t know about four years and five years yet because the drugs are too new. And we expect that if, as these drugs move up and are tested in the second-line setting and in the first-line setting, they’ll work even better because the cancer cells tend to be easier to kill in earlier lines of therapy. Other agents that have moved into the relapse follicular lymphoma space would include CAR T-cell therapy.

This is a fairly sophisticated complicated approach where you actually will run the patient’s blood through apheresis machine and you will extract the patient’s T cells and those T cells get genetically modified in a lab and then expanded and then are shipped back to the center and then re-infused back into the patient. So now again, we’re tricking the patient’s T cells into fighting their B-cell lymphoma.

And there are three CAR T products that are now FDA approved for use in follicular lymphoma, and they have very high response rates. With seemingly good durability we’re now getting three and four-year follow-up for these CAR T products with about half of people still in remission. The CAR T products probably have a little more toxicity and a little more risk than the bispecifics. So I think most of us are thinking we would try the bispecifics before CAR T, but there might be certain patients where a CAR T strategy is more appropriate to use before a bispecific.

So we’re very excited to have these tools in our toolbox. It’s always good to have more options. And then I should just mention the small molecule inhibitors. So here’s an example. Just this past year there was approval for a small molecule called zanubrutinib (Brukinsa). It targets an enzyme called BTK or Bruton’s tyrosine kinase. This is a pill really well tolerated. It’s given in a combination with an immunotherapy drug called obinutuzumab (Gazyva). This zanubrutinib-obinutuzumab combination got FDA-approved just this year for recurrent follicular lymphoma.

The results look very good for that. It’s very well-tolerated. There’s another oral agent called tazemetostat (Tazverik), which was approved a couple of years ago. It targets a mutated protein in follicular lymphoma. This is, again, is a pill super well-tolerated, very few side effects. So, there’s just a few examples for you of all the different treatment options we have for follicular lymphoma that has recurred after initial treatment.

And believe it or not, the decision-making can be difficult when you have so many choices and so many good choices, that’s a good problem to have. And I find myself a lot of times spending a lot of time with the patient and their family as we talk through these different options, and we try to think what’s best for them at this point in time, talking through the pros and the cons, how active it is, what side effects do we need to be concerned about. And it’s a lot for patients to digest when you have so many choices. But like I mentioned that’s actually a good problem to have.

Lisa Hatfield:

I think you’re right. There’s a lot of hope in those options. I do have two follow-up questions. One of them is when you talk about lenalidomide or brand name Revlimid, CAR T bispecific antibodies, this new small molecule, are these all quality of life is so important for cancer patients. Are these all limited duration treatments for recurrent disease when there’s a recurrence of the disease or are they long-term treatments for the disease?

Dr. Brad Kahl:

Yeah, really good question. And the answer is different for every agent. So I’ll try to just kind of run through the list. For the CAR T products, the three different CAR T products, it’s like a one-time treatment and then you’re done because the cells that get infused will persist in the patient’s body for months and months and months. So they’re infused and then the cells will hang around a long time acting on the cancer. So for the CAR T it’s a one-time treatment. For the bispecifics, the mosunetuzumab-axgb product is a time-limited treatment that is done in less than a year. The epcoritamab-bysp is designed to be given indefinitely.

So those are, there are some pros and cons of those two agents, the two small molecules that I mentioned, the zanubrutinib is meant to be given indefinitely and the tazemetostat is meant to be given indefinitely. And then the first one I mentioned was the lenalidomide. That is in follicular lymphoma that it was developed to be given for 12 months in this setting. So the duration of therapy is unique for each of the different agents that I mentioned.

Lisa Hatfield:

Okay. Thank you for that overview of all those emerging therapies. That’s great to know for patients, Dr. Kahl. All right. It’s that time where we answer questions we’ve received from you. Remember, as patients, we should always feel empowered to ask our healthcare providers any and all questions we might have about our treatment, our disease, and our prognosis. Please remember, however, this program is not a substitute for medical care. Always consult with your own medical team.

So, Dr. Kahl, we have several patients who have submitted some questions. The first question is regarding emerging technologies. And I think that you probably have answered that very well actually in a discussion here. So the second question this patient had is how might future innovations build on the latest treatments to offer even better outcomes for patients? You, I think maybe have touched on that, but maybe speak to that a little bit more as far as longer remissions. Yeah.

Dr. Brad Kahl:

Right, right. So I think right now the main emphasis in research is to take some of these really promising drugs that were developed for relapsed follicular lymphoma and do two things with them, test them in combinations in the relapse setting to see if you can make them even more active. So an example of that would be take the drug lenalidomide, which is really active in the relapse setting and pair it with the drug mosunetuzumab-axgb, which is very active in the relapse setting, and pair them together and see if you can get better results than either drug alone.

So there are studies trying to answer questions like that at this time. And then the other area of major interest is to take these promising new treatments approved in the relapse setting and test them upfront. So there are studies being literally designed right now as we speak that will test bispecific monoclonal antibodies in the frontline setting.

So patients can envision being offered a chance to have a chemo-free strategy where they’re just getting a bispecific monoclonal antibody as their initial treatment. And there are studies that will test these drugs as single agents, and there are studies that will test these drugs in combinations with other agents in the frontline setting, like lenalidomide, for example. So we have no results from any of these trials yet, but these trials are just starting to enroll patients and this could fundamentally change the way we’re managing follicular lymphoma in the future if any of these new strategies turn out to be more promising than what we have done historically.

Lisa Hatfield:

Thank you. Okay. Another question, Dr. Kahl. How do outcomes differ for patients with relapsed/refractory disease compared to those who respond well to initial treatment?

Dr. Brad Kahl:

So that’s a really good question. And when we have a patient going through frontline treatment, we’re all really crossing our fingers that that first remission is incredibly durable. Because when the disease relapses, the remissions do tend to get shorter and shorter and shorter, which is frustrating for everybody.And so we love it when we get a nice long first remission. And in the older days when all we had to offer was chemotherapy and some different immunochemotherapy regimens, the remissions in second line and third line might be two years or one year.  It can get frustrating as you go through treatment after treatment after treatment. It’s hard on patients. The side effects start to accumulate. And that’s one of the reasons we’re so excited about all these new agents that we have for relapsed disease with the bispecifics and the CAR T products and the small molecule inhibitors like tazemetostat and zanubrutinib. Because it appears as though these remissions for relapsed disease might be getting longer than what we have seen historically. So there’s no question that dealing with relapsed follicular lymphoma is more difficult than dealing with frontline follicular lymphoma. But we’re optimistic that these newer treatments we have are improving outcomes for patients with relapsed disease.

Lisa Hatfield:

Okay. Thank you. And another question, which patients are considered the most vulnerable when it comes to follicular lymphoma and why, and what measures can be taken to better support these populations in terms of treatment and care? And I’m not sure if they’re talking about different age groups or ethnic groups or geographic groups like rural versus more urban areas, but if you can speak maybe to general terms to answer that question, that would be great.

Dr. Brad Kahl:

Yeah, right. Well, the first thing that comes to mind are older patients. Older patients are always more challenging to take through cancer therapies. The older patients are more fragile. They don’t tolerate the treatments quite as well. They don’t have the physiologic reserve. They’re more susceptible to complications and infections. So I always think when we have older patients that need treatment in follicular lymphoma, the doctor has to be extra, extra careful, sort of the Goldilocks principle. You don’t want the treatment too hot and you don’t want it too cold, too hot, it might work great, but you might get unacceptable side effects too cold, maybe no side effects, but not enough activity against the disease. So we’re always trying to get that patient the best remission we can get them, but doing the least amount of harm along the way.

So I think that takes a little bit of art, a little bit of experience to figure out how to get your older more fragile patients through follicular lymphoma therapy. And then I think the whole idea of patients who live in rural areas, that can often be challenging too, because they may be hours and hours away from medical care. So if they do have a complication of treatment, an infection, for example, it can be challenging to get them the care they need in a quick amount of time. So when I have patients who I know live way out in the country, far away from our center, I just, we always give them a card, it’s got our phone number and I’m like, you feel like something’s going wrong, call us. I don’t care if it’s 2 in the morning, you call us.

It’s not your job to figure out what’s going wrong. That’s our job. It’s just your job to describe to us what you’re experiencing and then we’ll figure out over the phone whether we want you to drive the three hours to come see us or whether we think you just need to go to the closest place, which might be 30 minutes away. So at least you’re in the hands of some medical professionals. And then they can call us with an update on what they’re noticing, what the tests are saying. So taking care of patients who live far away from the medical center poses some additional challenges.

Lisa Hatfield:

Okay. Thank you. And that’s a great takeaway for patients. If you have a question, call your provider. They can help take the stress away from making that decision yourself. 

Well, here’s a loaded question for you, Dr. Kahl. Why does relapse happen in the first place, and what are the changes in the body that signal when and if treatment is likely going to fail?

Dr. Brad Kahl:

Boy, we wish we understood why relapse happens in the first place. Last I mentioned, most of these treatments can get people into remission, which means that they can kill the vast majority of the cancer cells, maybe 99.9 percent of them, but for some patients, there’s just a few stubborn cells that remain behind. Maybe those cells are just sitting there, not growing at all, which follicular lymphoma cells can do.

And when the cells are not trying to divide, not trying to grow, they’re kind of protected from killing. They’re just sitting there doing nothing. And so we think it’s this property that how the cells kind of protect themselves. And so these rare cells that are just kind of sitting there, quiescently not growing, not dividing, these might be the cells then that just hang around for years and then contribute to that relapse five years down the road.

But I admit we don’t fully understand why one patient will relapse two years after a treatment and the next patient is still in remission 10 years later. These are things that we don’t fully understand. Every patient’s lymphoma is a little different, I’m afraid. So two people with follicular lymphoma, they don’t really have the same cancer, cancer, they are sort of like snowflakes. No two are alike. And so they can have different mutations inside the cells that’ll make the cancer behave a little differently from one patient to another. It might make it respond to treatment a little differently from one patient to another. And so what is true for one follicular lymphoma patient may not be true for another.

So if a patient’s symptoms are not being relieved, that might be a clue that the treatment isn’t working as well as we want it to. And then in some cases the only way to figure out if a treatment is working is by scanning. So we’ll have a before picture from a PET scan or a CT scan, and then we’ll take them through a few cycles of treatment, and then we’ll get another scan to prove that the treatment is working like we want it to work. And if it’s not working like we want it to work, then we’ll say, okay, this one isn’t working for you. Let’s go to the what we think is the next best option for you.

Lisa Hatfield:

Okay. Thank you. And just listening to you and hearing about all these nuances with follicular lymphoma, I would probably recommend as a patient myself with a different kind of cancer, seeking out at least a consult from somebody who specializes mostly in follicular lymphoma, at least a hematologist who can tease through some of these nuances to help you as a patient find the best treatments and therapies and quality of life. So just a little tidbit there. So, Dr. Kahl, thank you so much for being part of this Patient Empowerment Network START HERE program.It’s these conversations that help patients truly empower themselves along their treatment journey. And on behalf of patients like myself and those watching, thank you for joining us, Dr. Kahl.

Dr. Brad Kahl:

Thank you for having me.

Lisa Hatfield:  

I’m Lisa Hatfield, thank you for joining this Patient Empowerment Network program.


Share Your Feedback

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



 

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

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

Download Resource Guide  |  Descargar guía de recursos

Transcript:

Dr. Nicole Rochester:

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

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

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

Charise Gleason:

Thank you so much for having me.

Dr. Nicole Rochester:

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

Dr. Craig Cole:

Yeah, and thank you for the invitation.

Dr. Nicole Rochester:

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

Dr. Craig Cole:

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

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

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

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

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

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

Dr. Nicole Rochester:

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

Charise Gleason:

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

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

Dr. Nicole Rochester:  

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

Charise Gleason:

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

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

Dr. Nicole Rochester:

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

Charise Gleason:

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

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

Dr. Nicole Rochester:

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

Dr. Craig Cole: 

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

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

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

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

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

Dr. Nicole Rochester:

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

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

Charise Gleason:  

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

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

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

Dr. Nicole Rochester:

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

Dr. Craig Cole: 

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

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

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

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

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

Dr. Nicole Rochester:  

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

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

Charise Gleason:

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

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

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

Dr. Nicole Rochester:

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

Dr. Craig Cole:

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

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

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

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

Dr. Nicole Rochester:

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

Dr. Craig Cole: 

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

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

Dr. Nicole Rochester:

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

Charise Gleason:

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

Dr. Nicole Rochester:

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

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

 

Clinical trials represent tomorrow’s medicine today, yet not every patient confronting a myeloma diagnosis is informed about all available care options. Surprisingly, some patients and their care partners are never introduced to the possibility of participating in clinical trials. How can we alter the course? What strategies can healthcare professionals (HCPs) employ to effectively communicate information about clinical trials and guide patients through next steps?

Experts Dr. Beth Faiman and RuthAnn Gordon share important insights into understanding the critical role of clinical trial nurses and how they educate and mentor nursing professionals around best practices for broaching clinical trial conversations.

Download Resource Guide|Descargar guía de recursos

Transcript:

Dr. Nicole Rochester:

Welcome to this Empowering Providers to Empower Patients program. I’m Dr. Nicole Rochester, pediatrician and CEO of Your GPS Doc. EPEP is a Patient Empowerment Network program that serves as a secure space for healthcare providers to learn techniques for improving physician-patient communication and overcoming practice barriers. Today we are tackling best practices for talking about clinical trials with myeloma patients. One significant challenge for some providers is initiating conversations about clinical trials and determining the appropriate timing of those conversations.

While clinical trials are often described as embodying tomorrow’s medicine today, not every patient facing a myeloma diagnosis is well-informed about all available care options. Astonishingly, some patients and their care partners are never even introduced to the possibility of participating in clinical trials. How can we shift this trend? How do we make these conversations a standard part of healthcare discussions at the outset of care?

What strategies can we as healthcare professionals employ to effectively convey information about clinical trials and guide patients and families through the next steps? We are joined today by RuthAnn Gordon, Director of Clinical Trial Nursing at Memorial Sloan Kettering. Ms. Gordon oversees clinical trial nurses, and develops and implements policies, procedures, standards, and systems to improve quality and compliance in the conduct of clinical research. We are also joined by Dr. Beth Faiman, a nurse practitioner and research oncology professional at the Cleveland Clinic. Dr. Faiman is an active author, presenter, and educator on the topic of multiple myeloma. Thank you both for joining me for this very important conversation.

Dr. Beth Faiman:

Thank you for having us.

Dr. Nicole Rochester: So we have a lot to discuss as it relates to best practices for talking about clinical trials with myeloma patients and their families. And I think this is always a topic that deserves so much conversation, likely more than we will be able to dedicate today. And while it can be a broadly beneficial conversation to have, in the program today we are speaking to the unique needs of myeloma patients and their families.

Some of the topics we’ll tackle today are understanding the critical role of clinical trial nurses, healthcare provider to healthcare provider recommended strategies to effectively communicate about pretrial eligibility determination and the consenting process, and how to educate and mentor nursing professionals in community hospital settings and beyond, guiding them to assist patients and families through the subsequent steps of participating in a clinical trial.

So let’s get started by talking about the role of clinical trial nurses. And, Ms. Gordon, I’m going to start with you. We know that research nurses are at the front line of treating patients. Can you speak to your role, and how you believe it has changed over time?

RuthAnn Gordon:

Absolutely. First, I can tell you that I’ve been doing research nursing for over 20 years and really love the work. I think it’s important for patients to have that support when they’re going through a clinical trial. And so we’ve done a lot of work to make sure that they have that support. So our role is to really be able to guide the patient through the journey, making sure that they’re educated on what they can expect on the clinical trial, and not only in terms of what maybe the drug might be doing them in terms of side effects, but what is their schedule going to look like? When are they going to have to come in? How long are they going to be here? What does that mean? And how do we support them with their quality of life while they go through all the responsibilities that they as patients have on a clinical trial, and what do they need to do to get ready for that experience?

And so we’re guiding them, we’re educating them, we’re ensuring that they do understand the potential side effects, but do understand also what their role is in the clinical trial and what they can expect. And I think that in terms of what has changed is that we have really put more value on the fact that having that nurse that has the expertise in the clinical trial and really can gate keep all of the patient care coordination that that involves from a clinician experience and from a clinician perspective, has really helped to ensure that our patients are ready, that we can do our very complex trials. Because trials have changed so much in the last decade.

There’s so many more expectations. There’s so many more things that need to happen while they’re on the trial that really having that clinician doing that with the patient has improved our ability to do those kinds of complex trials. And so I think that really recognizing that having that clinician perspective at the partner, at the bedside with the patient has really helped us to expand the kind of trials that we can do.  

Dr. Nicole Rochester:

Thank you. And as a physician who acknowledges that the time that we are allotted with our patients is often very little, it really makes a lot of sense that you all are able to bridge those gaps in the patient education, and are critically important to this work. So thank you for the work that you do. Dr. Faiman, we know that patients with myeloma are living longer, and they’re dealing with a different set of challenges than perhaps they previously encountered. So can you speak to the critical role of nurses specifically in the myeloma trial setting today?

Dr. Beth Faiman:

Yeah, absolutely. You know, I must first start by saying that the successes in the treatment of multiple myeloma can be owed to the brave participation of the patients and the caregivers. So let’s not forget about the caregivers to support the patients with clinical trials. And I started as a clinical trials nurse in the 1990s managing these patients, and a nurse practitioner in 2002. And now my role is different also as a researcher. And so I have seen firsthand all these drug developments. And so the difference from before when we had very few available therapies to now we have an armamentarium of drugs, and so deciding whether or not to participate in a clinical trial is super important. And how can we support our patients who are now living a longer lifespan with all these cumulative physical and financial issues? How can the nurses support the patients to get the access to the drugs and access to the financial resources they need so that they continue living a good quality of life? I know we have a very robust program to talk about later on, but I think nurses can fill that critical gap of finding resources for patients to allow them to participate in clinical trials to live a better life.

Dr. Nicole Rochester:

Thank you. And thank you for acknowledging the role of the patients and their caregivers in all of the growth that we’ve seen in this field, in the research. Ms. Gordon, we know that diversity in clinical trials is lacking. Certainly there have been lots of reports about that. It’s gotten increasing attention over the last few years. There’s now regulations related to that. And while things are changing, we have a long way to go. And it’s also important that we celebrate the wins that we’ve achieved along the way. So my question for you is, do research nurses play a role in increasing diversity in clinical trials and also in trial innovation?

RuthAnn Gordon:  

Absolutely. Absolutely. I think that one of the things that is important is community outreach, right? And so we have a lot of opportunities for research nurses. Well, as in large academic settings, a focus needs to be on exploring ways to have partnerships with our community organizations. And once those connections are established, the research nurses can play an extremely pivotal role in ensuring that we’re not only at point-of-consent educating, but way before that, getting involved in pre-screening activities in order to ensure that we’re looking at a diverse population.

And also to help with providers that are in the community that may have more advanced questions, and having the nurse being partners with those clinicians in order to help them get through the questions that they might have in a more timely manner. And so the research nurses that are attached to those academic centers have a pivotal role in ensuring that the community centers have support.

And in doing the pre-screening, I think is an important feature of having the research nurse also be involved in that process. And so I think that…we know that the community has needs, and we know that we need to increase that access. So looking at opportunities to partner with those settings, to me, with the research nurse, is really critical, and I think is an important way that we can do that.

Educating is, I’ll keep going back to that, when you get hands on that patient, making sure that they understand what they can expect. And any misconceptions. Clearing up misconceptions about being on clinical trials is really important so that when you have a patient that is eligible, that they feel comfortable and confident in joining that study.

Dr. Nicole Rochester:

Wonderful. Thank you so much. Dr. Faiman, I’m going to come back to you. And my question for you is, can you speak to unforeseen or outdated practice-related barriers that may actually hinder the work of research nurses?

Dr. Beth Faiman:

Absolutely. So I wanna preface this by saying in my mind. I think that both oncology nurses and advanced practice providers are highly trained professionals that should function within a multidisciplinary team. So that team, just as you mentioned before, Dr. Rochester, was the physician has limited time, maybe even the advanced practice provider has limited time. How can we harness all of our resources to provide the best care to that patient? And clinical trials are one of them. Clinical trials will offer support so that the patient can have access to a pharmacist, a social worker, a dedicated nurse, a dedicated line to call if they’re having a symptom. But to speak to some of the outdated procedures, again, it goes to scope of the practice. No matter how highly trained they are experientially or with credentialing, there are practice barriers within the hospital organization within state laws.

The nice thing about clinical trials though, is that nurses in most institutions are very able to watch that clinical protocol. They’ll look for who needs to hold a medication because of toxicity, consult with the provider, and then they’ll say, “Okay, hold your dose. And when your toxicity resolves, reduce it one dose level, and come back for labs,” or whatever that would entail. So while there are outdated practices historically, I think that within clinical trials nursing it provides some more autonomy for oncology nurses, again, as a part of that multidisciplinary team to enhance patient care.

Dr. Nicole Rochester:

That’s wonderful. Are there any additional solutions that you think are necessary as we continue to see advancements in myeloma?

Dr. Beth Faiman:

Continuing education for these highly trained providers. And so those kind of…the education though, I’ll tell you, I think should focus a lot on the disparities in clinical research. One of the things I’m passionate about is highlighting the implicit and explicit biases that are in clinical research. Many of us will say, “Oh, that person won’t be a good clinical trial candidate because they live too far away or they don’t have a caregiver.” And so I’m really…I tell all of my nurses, nurse practitioners, even physicians, just ask a patient. Don’t think that because they live an hour away, they’re not going to want to participate in a well-designed clinical trial without even asking them. That doesn’t even allow them the opportunity to provide feedback.

And then not to mention all of the resources that are available to patients that provide, that participate in clinical trials. Many of the research studies will provide transportation or an overnight stay or some nominal, again, not trying to coerce the patients, but some nominal reimbursement for expenses to allow them to have access to that drug. So I can talk on and on, because I’m so passionate about this topic. But being aware that biases exist, through continuing education will hopefully enhance the diversity of clinical trials so that patients will be able to have access to care, and then that the clinical trial results are representative of the actual population of who we’re treating.

Dr. Nicole Rochester:

Thank you. I can definitely feel they’re both of your passion, and that’s why it’s so important that we have you here with us today for this conversation. So let’s shift focus a little bit and begin to talk about communication between healthcare providers to effectively communicate about pretrial eligibility determination and the consent process. So I’m going to go right back to you, Dr. Faiman. What do you think are the unique barriers that providers face when they’re speaking about myeloma trials to patients and their families?

Dr. Beth Faiman:

Right. So I think multiple myeloma is unique in that there are such an explosion of new therapies within the last decade. There hasn’t been such momentum in any other cancer such as multiple myeloma. But, unfortunately, there are challenges such as language barriers and communication problems that overarching with all the different specialties. The geographic I had already mentioned in a previous discussion about the geographic barriers to participate in clinical trials, not meeting inclusion criteria, I think it takes an astute nurse or advanced practice provider or physician to now sequence the therapy.

So for example, they have new therapies such as BCMA-targeted drugs that are available through cellular therapy trials or bispecific antibody trials. And without getting too specific into the drugs, you need a specialist to be able to say, “Okay, if I give you this drug today, that will exclude you from a clinical trial that might be very innovative and promising in the future.”

So those are unique barriers to accessing clinical trials or standard therapies for that matter because of the plethora of therapies that are available. So getting in, having patients get in with a myeloma specialist, they might not see them on a regular basis, maybe employ telehealth techniques, see them once and then virtually connect, share information about what might be available. Those are ways that you can provide access to patients, caregivers, and others throughout their disease trajectory because they’re living longer than ever.

Dr. Nicole Rochester:

Which is a wonderful thing.

Dr. Beth Faiman:

Yes. 

Dr. Nicole Rochester:

Ms. Gordon, you’ve been doing this for a long time. In your experience, what are tried and true strategies that healthcare providers can implement to effectively communicate with their patients about clinical trials when speaking to pretrial eligibility determination and the consent process specifically?

RuthAnn Gordon:

Yeah. Thanks for the question. I think that an important thing whenever we’re talking to our patients is to really understand where they are with understanding and how they learn. So it’s important for us to know what their health literacy is so that we’re making sure that we’re talking in a language that they can understand and using words that are appropriate. And so that’s key. Clinical trials have a lot of comprehensive and complex assessments that are needed for pretrial eligibility, right?

So I think it’s really important to make sure that we are being transparent as to what they can expect. We don’t want them to have surprises later on and then not feel like they want to continue with that process. So I do recommend to my providers and my research nurses, sometimes get out the hard stuff up front. Know if they’re going to be there for 12-hour PKs. Let them know. It shouldn’t be a surprise. And I think that that really helps patients. First, they get involved in the process, they know what to expect, and you can really have more confidence in their adherence.

The other thing is to allow time for the conversations, right? We need to allow time for our patients to ask questions. And the consent process can be lengthy. There’s a lot on the document. Sometimes it’s quite long. So you wanna make sure that they’re in a state of mind to have the conversation, that you allow time for questions, and that you make it an exchange between the two of you. It’s a dialogue. It should be. And you should come with understanding where they’re at; understanding a little bit about what’s going on behind the scenes, right? What’s happening at home is important as you’re talking about pretrial eligibility, as you’re talking about what they can expect on trial, just to get a full picture of them.

So I think that those to me are very helpful. Providing take-home information to the patient so they have something to reflect on later is also really important, because they’re not going to grasp everything in that one session. And consenting is like an ongoing process, right? You have one conversation, you probably have 10 more.

Dr. Nicole Rochester:

That is wonderful. Thank you so much for sharing that. And I really appreciate that both of you have highlighted the importance of health literacy, and meeting our patients and families where they are and making sure that they understand, and this idea that it’s a continuum: That there may be multiple conversations that will be necessary. Dr. Faiman, as the myeloma treatment landscape continues to expand thanks to clinical trials, how are clinical trial conversations evolving, and what do you feel should be top of mind?

Dr. Beth Faiman:

That’s an excellent question. Over 20 different drugs are available in various combinations. And so we talked about sequencing very briefly about having patients that have access to clinical trials, making sure they’re not exposed to this class, or maybe they needed to be exposed to this class of drug before they can get drug B, for example. And so sharing mutual information through shared decision-making, again, the patients sharing information and goals of care, the provider and healthcare team mutually sharing information, bring in your social worker or pharmacist, etcetera, and then you can mutually agree on a treatment for the patient. And so that is something we did not have 20 years ago. There were very few effective agents.

I like to remind patients when we provide clinical trial consent forms, that the language is written by lawyers, but it’s intended to protect you. I overemphasize that this is voluntary, and you can withdraw your consent at any time. But I try to go back and highlight why there’s stringent, plus or minus one day, maybe you can’t take off three days to go on a holiday weekend, because we really need to dose this drug on that day and obtain this blood information. So again, having the patients understand what’s involved in the clinical trials and then being able to provide information.

I like to also offer handouts. So the International Myeloma Foundation has clinical trials and diversity handouts. And then another one that I really like is by the FDA that describes the importance of clinical trials. I give that to everybody. So at diagnosis, if you’re on a standard care treatment, you’re not receiving a clinical trial. Everybody that comes into my office that I see for myeloma amyloidosis and related disorders, I would say, “You are a candidate for clinical trial now, but if I or somebody else does not involve you or ask you to participate, then ask us. Just ask us about clinical trials.” I even have a pen that says “Ask me about clinical trials” so that everybody can see it.

Dr. Nicole Rochester:

I love the idea of a pen. Wonderful. Well, let’s move on to how to educate and mentor nursing professionals. Both of you are nursing professionals, and you’ve clearly highlighted in this program so far the importance of the role of nurses in this clinical trial process. So, Ms. Gordon, I’m going to go to you. We know that one significant challenge for some providers is actually initiating conversations about clinical trials and also determining the appropriate timing. Can you speak to whether care variation may pose challenges in community hospital settings, perhaps compared to academic hospitals?

RuthAnn Gordon:

Yeah, absolutely. I think one of the most important things about when to talk to the patient is every time, anytime, right? I think that we should be asking them if they’re interested in clinical trials. If they haven’t been engaged in that, we should be talking to them about, “You know, there’s maybe a chance at some time in our partnership together that we will be talking about clinical trials.” And introducing that up front I think is really important so that we don’t leave clinical trials sort of as a last thought and the patient have that feeling.

And I think that for the community setting, that’s one of the things that may be a challenge, is because it is hard to put a patient on a clinical trial and run it from a community setting. So it’s, how do we give them the support and resources so that it’s not so hard and that they do offer it and talk to their patients as much as possible about it? And I feel like that’s what we need to do more with these partnerships with academic settings, is that we have to give them support so that it’s not so hard, and that that clinical trials first of mind to them when they’re planning care for their patients.

Dr. Nicole Rochester:

I see a theme here: Partnership, collaboration. Dr. Faiman, as we continue on this topic, and as someone who has been a consistent figure in the continuum of care, how do you guide other nursing professionals when it comes to clinical trial communication? Do you have specific tips or tricks or things that you can share with the audience?

Dr. Beth Faiman:

Yeah, absolutely. So I think I have a unique perspective having been a clinical trials nurse, nurse practitioner, and now I conduct, independently, clinical trials. And so I, throughout that whole journey, so I share my experiences and some of the key tips that I like to share with other nurses and healthcare providers is just coming to the patient level. And as Ruthie had said a moment ago, at each encounter you have that opportunity to educate that patient about their labs, what’s their remission status, their disease status, what drugs are they on, what worked, what didn’t work? And the ones that are in remission for a while, one, two, three, five years, we have discussions about next therapy. So I say to them, “Okay, now, we have a great clinical trial. I think everything’s going very well with your disease remission status, but let’s make sure that you know what might be the next best thing for you.”

And I start planting that seed, giving them information about next therapy so that it’s not that, “Oh my gosh, I thought I was never going to relapse and now I need another treatment.” It’s okay, we have a game plan, we’re here in this together, let’s get some information. So disseminating this at this critical information to nurses at national conferences about the different drugs that are available, the toxicities, and how to offer them to our patients, I think is really important. But really just cheering in that partnership, as we just talked about, is really key to success, I think.

Dr. Nicole Rochester:

Great. Well, it’s time to wrap up our roundtable. And I have truly enjoyed this conversation. I have personally learned a lot. I’m sure that our audience will learn a lot as well. So I’d like to get closing thoughts from each of you. So I’ll start with you, Ms. Gordon. What is the most important takeaway message that you wanna leave with other healthcare professionals who may be watching?

RuthAnn Gordon:

Thank you. First, thank you for having me at this. This has been an amazing experience, and I want the providers out there to not be afraid of clinical trials, to look at opportunities to work with nurses to help support you in those clinical trials, to have the conversations with your patients early and often, and to work with your community partners.

Dr. Nicole Rochester:

And thank you. Thank you, Ms. Gordon. What about you, Dr. Faiman?

Dr. Beth Faiman:

Well, I guess I would say never underestimate for the nurses, nurse practitioners, physician assistants, social workers, physicians, anyone on the healthcare team. Never underestimate the unique role that you enact in the care of patients with myeloma or other disorders. Use your voice to speak up. If you think a patient is a candidate for a clinical trial but that physician or other provider hasn’t recommended it to them, then tell them why. You can refer them yourself as well. Ask patients about barriers to participation. Is it physical, financial, social? You can’t take time off of work. And then provide that assistance in counseling. It takes a big effort to support our patients, but we would’ve never gotten to where we are with treatment of multiple myeloma in 2024 without patient participation in clinical trials. So whatever we can do to enhance diversity, minimize bias, and support our patients, please try to do the best to do your part.

Dr. Nicole Rochester:

Well, thank you both, Ms. Gordon, Dr. Faiman, for this awesome conversation. We have learned a lot about how we got to where we are with myeloma. And thank you again for pointing out early on, it’s the patients and their caregivers and their participation in clinical trials that has led to the landscape where we are now with so many drugs available. And that really highlights the importance of clinical trials. We talked about diversity of clinical trials. 

We talked about the implicit and explicit biases that all of us have, and that sometimes may preclude us from recommending trials for patients that can benefit from this therapy. And we’ve talked about the importance of having these conversations, not once, not twice, but every time that you are in the presence of a patient and their family. And also just the partnership and the collaboration that has already taken place, and that we hope to continue to foster as we move forward. So thank you both again, and thank you all for tuning in to this Empowering Providers to Empower Patients Program. I’m Dr. Nicole Rochester. 

What Are Follicular Lymphoma Considerations for Watch and Wait?

What Are Follicular Lymphoma Considerations for Watch and Wait? from Patient Empowerment Network on Vimeo.

What do follicular lymphoma patients and providers need to be aware of during watch and wait? Expert Dr. Kami Maddocks from Ohio State University discusses what factors are monitored during watch and wait, common symptoms to be on the lookout for, and who patients can contact about concerns.

See More from START HERE Follicular Lymphoma

Related Resources:

What’s the News on Follicular Lymphoma and Bispecific Antibodies

What Should Follicular Lymphoma Patients Know About Remission

What Can Follicular Lymphoma Patients Expect With Remission


Transcript:

Lisa Hatfield:

One person is saying, “I’m in watch and wait currently. Is it possible that I’ll never need treatment, or how long do you wait, and what am I waiting for?”

Dr. Kami Maddocks:

That is a great question. There are patients in watch and wait who will never require treatment. Watching and waiting, we’re watching blood counts, watching the size of lymph nodes. So things that we’re watching for and you’re watching for are changes in lymph nodes size, so are they growing? Are they becoming more symptomatic? Is there a rapid change in them? Are we seeing a change in the blood counts? Are patients starting to have a drop in their blood counts which can happen if somebody’s spleen is getting bigger if they have lymphoma in their bone marrow and that’s progressing, watching for if the lymph nodes are causing a problem, you notice somebody have one in a location like the neck that’s starting to make swallowing difficult or changes in voice, that’s something you want to treat. And then there’s something called B symptoms that we watch for. So if the patient had night sweats…

…night sweats are like drenching night sweats, soak the bed, have to change clothes potentially sheets, fevers, so daily fevers that occur, or significant or rapid weight loss for no reason. All those are kinds of things that we want people to watch for. And we discussed a little bit too if patients start having extreme fatigue, not feeling well, not being able to eat, not having appetites if they have a new pain. And again everybody can have aches and pains. But if you’re having pain that’s not going away or some sort of symptom that’s not improving, those are all things we want to definitely have checked out.

Lisa Hatfield:

I imagine with some of your patients in that mode, there’s what I call the mental gymnastics of thinking, okay, I have this cancer, but I can’t do anything about it, and these symptoms are really vague that come up. So do you allow your patients just to contact you if they’re saying, “I think I have these symptoms, I’m nervous about this.” Can they come in and have a visit with you or contact you at any time?

Dr. Kami Maddocks:

Oh, yes. So we have a 24-hour triage line. I recommend that if patients have a question or concern, it’s better to ask us because if we don’t know about it, we can’t help is the first thing. Usually, we talk to the patient and say, “Okay, how long has this been going on” and see if it’s a red flag like you need to come in right now or is this something that maybe we might recommend getting a set of labs to look at certain labs to see if they’ve changed at all.

We might say, “Okay this seems like something we should actually see you for, but I want CT scans too so let’s order them, so I can have that information when you see me.” So, yeah, I think people should always call with any signs, symptoms, concerns, and then it can be addressed. Now, there are some things that we might say, “Okay, we think based on everything that new cough is probably more likely a respiratory infection. It’s okay to see your PCP.” But we also go through that as well. So yes, I think it’s always best to check in and not let something go.

Lisa Hatfield:

I’m guessing that’s challenging for some of those people in that mode, just thinking, well, I’m just waiting here, so that’s got to be a little bit more challenging.

Dr. Kami Maddocks:

I think you’re absolutely right. And sometimes there’s a benefit to…certainly like rituximab (Rituxan) therapy when there is a disease there, and it is a challenge to think that it’s not being treated.


Share Your Feedback:

Create your own user feedback survey

What Can Follicular Lymphoma Patients Expect With Remission?

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

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

See More from START HERE Follicular Lymphoma

Related Resources:

What’s the News on Follicular Lymphoma and Bispecific Antibodies

What Should Follicular Lymphoma Patients Know About Remission

What Are Follicular Lymphoma Considerations for Watch and Wait


Transcript:

Lisa Hatfield:

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

Dr. Kami Maddocks

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

Lisa Hatfield:

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

Dr. Kami Maddocks:

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

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


Share Your Feedback:

Create your own user feedback survey

What Should Follicular Lymphoma Patients Know About Recurrence?

What Should Follicular Lymphoma Patients Know About Recurrence? from Patient Empowerment Network on Vimeo.

When follicular lymphoma recurs, what should patients expect? Expert Dr. Kami Maddocks from The Ohio State University explains recurrence and how recurrence can differ among patients.

See More from START HERE Follicular Lymphoma

Related Resources:

What’s the News on Follicular Lymphoma and Bispecific Antibodies

What Should Follicular Lymphoma Patients Know About Remission

What Are Follicular Lymphoma Considerations for Watch and Wait


Transcript:

Lisa Hatfield:

So we have a person asking, “Does lymphoma recurrence always happen in an aggressive manner?”

Dr. Kami Maddocks:

That’s a great question. The answer is no on that, and, in fact, lymphoma recurrence doesn’t always need to be treated just because it does recur. So when you look at follicular lymphoma, there are patients who are in a watch-and-wait period. When they’re diagnosed, they’ll eventually progress to requiring treatment or most…well, there are patients who might not. Once they require treatment, they get a time period without…most of them will get a time period without disease.

There are patients who will…that you’ll find lymph nodes growing on CT scans maybe that you’re doing monitoring for, but the patient will otherwise feel well. They won’t have, necessarily, very big lymph nodes. Their blood counts will be okay and you may say, okay, just like you had watch-and-wait to start with, we’re going to watch and wait right now with this relapse, because you don’t have any indications that are saying we need to treat this.

And again that doesn’t necessarily make our patient live longer. So you want to balance their quality of life and toxicities of treatment. There are patients who will…when they relapse, they will have indications for treatments, and then there are patients who will potentially have more aggressive relapses and be very symptomatic or have larger lymph nodes.


Share Your Feedback:

Create your own user feedback survey

What Are Predictors of Follicular Lymphoma Relapse or Transformation?

What Are Predictors of Follicular Lymphoma Relapse or Transformation? from Patient Empowerment Network on Vimeo.

Does follicular lymphoma relapse or transformation have notable predictors? Expert Dr. Kami Maddocks from The Ohio State University shares common symptoms that may signal relapse or transformation and shares her perspective when consulting a follicular lymphoma specialist can be especially helpful. 

See More from START HERE Follicular Lymphoma

Related Resources:

What Should Follicular Lymphoma Patients Know About Beauty Products

What Follicular Lymphoma Treatment Side Effects Should Patients Expect

What Are Follicular Lymphoma Considerations for Watch and Wait


Transcript:

Lisa Hatfield:

for follicular lymphoma, what are the predictors of transformation and relapse, and what symptoms should patients be looking out for and tell their doctor about?

Dr. Kami Maddocks:

Yeah, so I think this is a great question. As far as just in everybody predicting when they’re going to progress, when they’re going to relapse, we don’t actually have great ways to do that right now. One of the things that has been shown to potentially predict things is for patients who do receive treatment if they have an early relapse, that suggests that their disease is going to behave more aggressively. As far as looking for relapse, things that people want to look for, not all patients will have symptoms but certainly if patients feel any lumps or bumps if they start…I like to tell my patients if you…patients usually know if something’s wrong.

So everybody’s going to have aches and pains, everybody’s going to have the normal infections, but if you’re not feeling well, significant fatigue, night sweats, fevers are always something that we look for but that’s not something that everybody has. New pains, not feeling well, just kind of the inability to feel like you can keep up with what you’re doing daily, those are always things that you should at least call in to see if you should be evaluated. It’s important to know that follicular lymphoma patients are followed. As I said, you are followed forever. We do also watch your blood counts to make sure that we’re not seeing changes in blood counts, changes in lactate dehydrogenase which is a non-specific marker but something that we follow in lymphoma.

Lisa Hatfield:

And one follow-up to that question also. So are there follicular lymphoma specialists? If a patient is maybe in an area that doesn’t have a large academic center or a large cancer institution, do you recommend they see somebody who specializes in follicular lymphoma or can they see even for a consult or do you think that their local hematologist oncologist is very familiar with that themselves? Do you have recommendations?

Dr. Kami Maddocks:

Yeah, so that’s a great question. Local, I think follicular lymphoma is common enough that a lot of our general oncologists who see everything see follicular lymphoma. I think it never hurts, of course, to ask about clinical trials. So if that’s something that might be available. If it’s available, it might be worth going to a specialist for.

If there’s concerns, I think it’s always a good idea to get a second opinion to make sure that a patient is comfortable. I think if a patient seems to have a more aggressive behaving follicular or if they’ve had a lot of different treatments, that’s also if you’re seeing a general oncologist at a time, that it’s good to see if there are clinical trials or if a specialist has anything new or different.


Share Your Feedback:

Create your own user feedback survey

What Should Follicular Lymphoma Patients Know About Remission?

What Should Follicular Lymphoma Patients Know About Remission? from Patient Empowerment Network on Vimeo.

What does follicular lymphoma remission mean, and what should patients know about it? Expert Dr. Kami Maddocks from The Ohio State University explains remission, functional cure, and immunosuppression.

See More from START HERE Follicular Lymphoma

Related Resources:

What Should Follicular Lymphoma Patients Know About Beauty Products

What Follicular Lymphoma Treatment Side Effects Should Patients Expect

What Can Follicular Lymphoma Patients Expect With Remission


Transcript:

Lisa Hatfield:

This patient is asking if you are in remission for a long period of time after follicular lymphoma treatment, can you technically be cured in some cases, or are you considered to still have the cancer?

Dr. Kami Maddocks:

So that is a great question. There’s a term that’s used in follicular lymphoma called a functional cure. So we have patients that essentially get treated, and they live long enough that they die from something else without their follicular lymphoma ever relapsing. So while we say from what we know if somebody lives long enough that this disease is likely going to relapse at some point, there are patients that will be treated, and the disease will never come back.

Lisa Hatfield:

Can patients facing follicular lymphoma be considered immunocompromised if they’re in remission?

Dr. Kami Maddocks

I think this kind of goes back to when we talked about the immune system recovery that this can be a little bit of a complicated question, because it depends a little bit on the treatment that they got, how far out from the treatment they are and how many treatments they’ve had in the past. So, in general, if I have a patient that has received therapy, their counts have recovered, they in general look like…their lab work looks like their immune system, then in general I would say that they have an immune system that’s likely similar to somebody who didn’t have the follicular lymphoma, and they’re going to be able to fight infections and respond to vaccines.

I think what we do know is sometimes when patients get rituximab maintenance or obinutuzumab (Gazyva) maintenance or some of the chemotherapies there are some patients that can have a longer time that they’re immunosuppressed. So I think this is always something that’s good to ask your doctor for. In your specific situation with the treatment you received, when do you expect to have a regularly functioning immune system?


Share Your Feedback:

Create your own user feedback survey

What Should Follicular Lymphoma Patients Know About Beauty Products?

What Should Follicular Lymphoma Patients Know About Beauty Products? from Patient Empowerment Network on Vimeo.

What do follicular lymphoma patients need to know about beauty products? Expert Dr. Kami Maddocks from The Ohio State University explains beauty products that can help protect patients from complications and secondary malignancies.

See More from START HERE Follicular Lymphoma

Related Resources:

Understanding Immune System Recovery Post Follicular Lymphoma Treatment

What Follicular Lymphoma Treatment Side Effects Should Patients Expect

What Can Follicular Lymphoma Patients Expect With Remission


Transcript:

Lisa Hatfield:

Another good question, and this comes up with many blood cancers or a lot of cancers. Should patients be mindful of beauty products such as shampoos, soaps, and sunblocks when in remission for follicular lymphoma?

Dr. Kami Maddocks:

That’s another great question. I am not aware of any data connecting those specific things. I think patients definitely should be wearing sunblock, because we know that a lot of patients with blood cancers can get secondary malignancies. So being careful of being…we also know, I should say, even patients who are getting treated can have a more sensitivity to the sun.

So being careful with sun precautions, either avoiding the sun or wearing sunblock, making sure you’re covered when you go outside. I’ll even say I’ve seen a few patients who during treatment have gotten bad windburns. So your skin definitely can be more sensitive when you’re receiving therapies.


Share Your Feedback:

Create your own user feedback survey