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What Should Patients Know About DLBCL Treatment and Research?

What Should Patients Know About DLBCL Treatment and Research? from Patient Empowerment Network on Vimeo.

Why should diffuse large B-cell lymphoma (DLBCL) patients feel empowered to participate in their treatment and care decisions? Dr. Kami Maddocks reviews current DLBCL therapies, discusses developing research in the field, and shares advice encouraging patients to speak up and become active members of their team.

Dr. Kami Maddocks is a hematologist who specializes in treating patients with B-cell malignancies at the The Ohio State University Comprehensive Cancer Center – The James. Learn more about Dr. Maddocks, here.

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Transcript:

Katherine:

Hello and welcome. I’m Katherine Banwell, your host for today’s program. Today we are going to talk about diffuse large B-cell lymphoma, known as DLBCL and how you can feel empowered to speak up and be a partner in your care. Before we get into the discussion, please remember that this program is not a substitute for seeking medical advice.

Please refer to your health care team about what might be best for you. Well, joining us today is Dr. Kami Maddocks. Dr. Maddocks, welcome. Would you please introduce yourself?

Dr. Maddocks:

Thank you. I’m Kami Maddocks. I’m a lymphoma doctor at the Ohio State University James Comprehensive Cancer Program.

Katherine:

Excellent. Thank you so much for being with us today.

Dr. Maddocks:

Thank you for having me.

Katherine:

Well, since the goal of this webinar is to help our viewers feel empowered in their care, in your opinion, what does it mean to be an empowered patient?

Dr. Maddocks:

I think an empowered patient is invested in their health and in their medical care. This can look like different things for different patients but I think being educated about their disease, being invested in decision making, along with their providers, and then being invested in the outcomes of their treatment and their disease.

Katherine:

What do you feel is the patient’s role in their care?

Dr. Maddocks:

I think it’s important that the patient partners with their care providers and their family, while they’re going through treatment for any condition. So, I think the most important thing is that the patient is comfortable with their care. And I think that includes being educated on their disease process. For some patients, this is going to be doing some of their own research, for some patients, this is going to be really relying and trusting in what their physician and care provider say, and for some patients, this is going to include other information that they seek out after they get the information from their care provider.

Katherine:

How do you empower patients?

Dr. Maddocks:

When I first meet a patient, I schedule a large block of time to spend with the patient, and I like to explain to the patient their new diagnosis. Or, if it’s not a new diagnosis, what I know about their disease, try to understand if they understand what I’m explaining, and what they know before coming to see me.

If there are treatment options, discuss those and go over those and make sure that I ask them to repeat or go over what they understand, from what I’ve explained from that. And then, making sure that they’re comfortable with available options outside of that. So, are there clinical trials available? Should they be seeking second opinions? Where is it best for them to get those second opinions? And then, ensuring that we have open lines of communications, so they have ways to contact me or my office. Making sure that they’re comfortable following up with questions that come in throughout the disease treatment and process. Ensuring that they know to contact us if there are changes or concerns so that we can address things in real time.

Katherine:

Yeah. That’s great advice, Dr. Maddocks. Thank you. Now, let’s learn more about DLBCL. For those who may be newly diagnosed, what is it?

Dr. Maddocks:

Diffuse large B-cell lymphoma is a type of non-Hodgkin’s lymphoma. So, this is considered a blood cancer. Lymphomas are a cancer of the lymphocyte, which is one of the types of blood cells that form your immune system. So, when you think about your nodes, these are part of the cells that help fight different types of infection. So, diffuse large B-cell lymphoma is one of the types of non-Hodgkin’s lymphomas, it’s aggressive, and it is considered an aggressive form of lymphoma. And it’s when you get a cancer of those lymph cells that often involved the lymph nodes but could also involve bone marrow, blood cells, other sites outside of the lymph nodes.

Katherine:

Do we know what causes DLBCL?

Dr. Maddocks:

For the most part, we don’t know what causes diffuse large B-cell lymphoma. So, most of the time, it’s going to arise with patients not having risk factors. We know that age is the most common risk factor with the median diagnosis of a patient in their 60s.

Although, we also know that diffuse large B-cell lymphoma, why it’s more common to be diagnosed later in life, can occur across all the age spectrum. So, you see this in pediatric adolescents, young adults, and older adults. There are some causes. These represent more than minority of cases but certain viruses, including HIV virus, can be associated with the development of lymphoma. Certain other medical conditions, like rheumatologic conditions and some of the treatments for these, can be associated, and then, some chemical exposures. But in general, most of the time, we’re not going to have an identified cause.

Katherine:

What are the symptoms?

Dr. Maddocks:

They can look a little bit different for different patients. So, because this is often a cancer, most of the time there will be lymph node involvement. For some patients, they can actually feel or somebody will see a lymph node that grows. Most of the time, when this occurs, it’s going to be in the neck, under the armpits, or in the groin area.

Patients can start to have symptoms from other sites, of those lymph nodes growing or disease so that they can get pain or shortness of breath. Or they can have what’s called B symptoms. So, B symptoms are inflammatory like symptoms from the lymphoma, and these include weight loss. So, a rapid change in weight for no reason. Night sweats. So, daily night sweats, we call them drenching night sweats. They wake up the patient, they soak their clothes, sometimes they soak the whole bed. And then, fatigue. So, extreme fatigue, not able to do your daily activities. And then, occasional people will have cyclical fevers.

Katherine:

Are there different types of DLBCL?

Dr. Maddocks:

So, in general, diffuse large B-cell lymphoma, there’s one major subtype. You can divide it into different pathological or molecular subtypes.

So, where the cell develops lymphoma during the cell’s development, there are different chromosome abnormalities. So, there are different categorizations but in general, diffuse large B-cell lymphoma itself is considered – it’s treated, often, the same even with these different subtypes. So, there are different subtypes but in general, they’re all considered a form of diffuse large B-cell lymphoma.

Katherine:

They’re under this umbrella of DLBCL.

Dr. Maddocks:

Yeah. Yeah.

Katherine:

Yeah. Do patients usually get diagnosed after they experience some symptoms?

Dr. Maddocks:

So, because this is an aggressive lymphoma, there are a lot of patients that will have symptoms with this, and that’s how they’ll present. Via either noticing the lymph nodes, having the B symptoms, or having pain, or other abnormalities from the lymphoma progressing.

Occasionally, whereas indolent lymphoma is more commonly found of incidentally. Occasionally, that’ll be the case with these, but I would say a fair number of patients have some sort of symptom or something that brings them to medical attention.

Katherine:

How does DLBCL progress?

Dr. Maddocks:

So, they’re different, as far as there’s more aggressive and less aggressive. So, some patients can develop symptoms, really, over days to weeks. Whereas, some patients are more weeks to months.

Katherine:

“Okay. Let’s turn to treatment options. Is a person with DLBCL treated right away?”

Dr. Maddocks:

They’re treated pretty quickly after the diagnosis. So, typically, when somebody has a diagnosis, they undergo a number of different tests, including lab work, imaging work, sometimes for their biopsies.

So, that information is gathered over days to sometimes a few weeks process. Then, when you have all that information, you go over the results, go over the treatment at that time. So, it’s typically treated not within, usually, a day of diagnosis but it’s not something that you spend weeks or months before treating.

Katherine:

Yeah. What are the different types of treatments available?

Dr. Maddocks:

So, the diffuse large B-cell lymphoma is treated with chemotherapy and immunotherapy. So, a combination of an immune antibody therapy and chemotherapy. There is a role in some cases for radiation, but never just radiation alone and never just surgery alone. So, there’s always what we call a systemic treatment. So, a treatment that goes everywhere. Because this is considered a blood cancer, it’s a cancer of those cells, it can really spread anywhere.

And so, just cutting it out with surgery or just radiating the area doesn’t treat everything, even if you can’t identify it.

Katherine:

Can you get specific about some of the treatment classes?

Dr. Maddocks:

Yeah. So, the most common treatment for diffuse large B-cell lymphoma is a chemo immunotherapy called R-CHOP. So, this is three chemotherapies and antibody therapy that’s direct called rituximab (Rituxan) that’s directed at a protein on the lymphoma cells. And then, a steroid called prednisone, given with the chemo and then for a few days after. There was a study that recently showed an improvement with switching one of those drugs with another immunotherapy that’s an antibody conjugated to a chemo drug. But that’s not yet been approved. There are clinical trials available. So, looking at these treatments that might be new or combining therapies with this standard treatment.

And then, very occasionally, there are certain features of diffuse large B-cell lymphoma. There are particular few different subtypes that are classified a little bit differently, that are treated within an infusional therapy called Dose Adjusted R-EPOCH.

Katherine:

What about stem cell therapy? Is that used?

Dr. Maddocks:

Stem cell therapy is used in the relapse setting. So, if a patient doesn’t go into a remission or if they relapse after achieving a remission with their chemotherapy, then stem cell transplant is an option. So, there are actually two different types of stem cell transplant. One from yourself and one from somebody else. In lymphoma, we typically do one from yourself, where you donate your own cell before. But we don’t use that as part of the initial treatment.

Katherine:

So, if somebody is high risk, Dr. Maddocks, is the approach different for them?

Dr. Maddocks:

So, it depends. We define high risk in different ways. So, there’s a specific type of lymphoma called double hit lymphoma, where there’s a few chromosomal translocations associated with the lymphoma, that we give a little more aggressive chemo immunotherapy regimen. There are also other subtypes, including a rare type of lymphoma called primary mediastinal B-cell lymphoma. Again, categorized a little bit different but sometimes included as a large cell lymphoma. We also give that treatment for.

Katherine:

Is a cure possible?

Dr. Maddocks:

Yes. A cure is possible. When you look at patients who are treated with initial chemotherapy, we cure somewhere between 60 percent to 70 percent of patients with the initial chemotherapy. If patients’ relapse, depending on their age and their condition, they’re candidates for other therapies.

And therapy including other chemo and stem cell transplant is potentially curable in some patients. And then, there’s a newer therapy called chimeric antigen receptor T-cell, or CAR T-cell therapy, which also looks like it’s curing a subset of patients who relapse or don’t respond to initial therapy.

Katherine:

Okay. What are the side effects that patients can expect with these treatments?

Dr. Maddocks:

So, when they get the treatment, on the day they get it, there can be an infusion reaction to the rituximab or antibody therapies. So, the first treatment, that treatment is given very slowly and titrated up. If patients have a reaction, we stop it, treat the reaction, and then they’re able to continue therapy but again, that first day, it can take several hours for that one antibody to get in. And then, later, therapies are given at a more rapid pace.

So, about 70 percent of people who react, it can be really almost anything. Some people get flushing, some people will get a fever, some people have shortness of breath or their heart rate will go up.

Katherine:

Okay. All right. Any other side effects?

Dr. Maddocks:

Yeah. So then chemotherapy is meant to kill cells during the cell cycle. So, cancer cells divide more rapidly, chemotherapy is targeting them, but it also effects good cells in the body, specifically those that divide at a more rapid pace. The biggest risk of chemotherapy is infection.

So, it effects the good white blood cells that fight infections. It can affect your red cells that carry your iron, gives you your energy. Or your platelets which help you to clot or not bleed when you get caught. So, infection is the biggest risk of chemotherapy. So, usually, with this regimen, that infectious risk is highest within the second week of treatment, that treatment is given every three weeks.

So, we tell patients they should buy a thermometer, check their temperature, they have to notify their doctor or go to the ER if they have a fever. Besides infection, there’s a small percentage of patients who might need a transfusion. GI toxicity. So, nausea, vomiting, diarrhea, mouth sores, constipation, all of which we have good treatments for. So, we give medication before chemo to try to prevent people from getting sick and then give them medicine to go home with, if they have any nausea. We can alter those medications as time goes on, if they’re having any problems. So, we just need to know about it. Most patients will lose their hair with this regimen.

It can affect people’s tastes, it can make their skin more sensitive to the sun, and then, less common but potential side effects are it can cause damage to the nerves. Or something we call neuropathy, which most often patients will start with getting numbness or tingling in their fingers and toes, and we can dose adjust if that’s causing some problems.

And then, there’s a risk to the heart with one of the drugs. So, the heart should pump like this. The heart pump function can go down. So, we always check a patient’s heart pump function before they get their chemo, to make sure that they’re not at higher risk for that to happen.

Katherine:

So, all of these approaches are used in initial treatment?

Dr. Maddocks:

Mm-hmm.

Katherine:

Okay. So, how do you know if a treatment is working?

Dr. Maddocks:

So, as far as evaluating treatment, you get a scan before you start treatments, so we know where all the lymphoma is at. And then, typically, you get some sort of scan in the middle of treatment, and then after, you complete your six cycles of treatment. Or for early stages, sometimes patients will get less than six cycles. So, we get scans to make sure it’s working. So, you can tell by those things, how much has gone, hopefully all of it has gone by the end. Occasionally, patients that had a lot of symptoms to start with, their symptoms will go away, and then they’ll start coming back.

This is less common, because the majority of patients do respond to chemotherapy. It’s less common to get patients who are what is called refractory, meaning they don’t get any response to therapy. So, occasionally they’ll note symptoms but a lot of times, we’ll see something on that mid-therapy or end of therapy scan, if it’s not going to make it all go away.

Katherine:

Yeah. So, if a treatment doesn’t work, what happens then?

Dr. Maddocks:

If treatment doesn’t work, it depends a little bit – and now it depends a little bit on the timing of that treatment not working. So, it used to be that patients who were eligible for treatment, no matter if it didn’t work right away or if it put them into what we call a remission, so there’s no evidence of disease and then it relapsed, they would have the option of further chemotherapy and then an autologous stem cell transplant. So, a bone marrow transplant where they donate their own cells.

If they were in a good enough health or if they were not – to do that, you have to donate your own bone marrow cells and as we age, we make less bone marrow cells. So, once you reach a certain age, your body can’t produce enough cells to donate to a transplant. In those patients, we offer them less aggressive chemo options, which were not known to be curable but could put them into remission again, for a while. More recently, there has been some that chimeric antigen receptor T-cell therapy that I mentioned where you actually donate your own T cells. So that’s –And your lymphoma is of your B cells.

Your T cells are in another immune cell that should recognize that lymphoma is bad and attack it, and they’re not functioning properly. So, you donate your own T cells and they’re sent off and reengineered to target a protein on the tumor. Then, you get those cells back and they’re meant to target the lymphoma and kill the lymphoma cells.

So, that is now an approved therapy for patients who don’t achieve the remission – so, who’s first chemo doesn’t work or if they relapse within a year of completing chemo. So, that’s a possibility. The chemo and transplants a possibility. Or there’s other approved therapies now, that can be given as second options or third or later options, which have been shown to keep patients in remission for a while.

Katherine:

Dr. Maddocks, you touched up on this a moment ago but what are the approaches if a patient relapses? What do you do?

Dr. Maddocks:

So, you would rework them up if they relapsed. Similar to that, if they relapse within a year and they have access to the CAR-T and they’re healthy for that, then that’ll be an option. The second type of chemotherapy in the transplant. So, you can’t just go straight to a transplant. You have to get a different type of chemotherapy to try to get the disease under control again, before you would go to a transplant.

Or there’s a number of other targeted therapies that are approved. So, there’s other – I talked about rituximab is given in the first line, that targets a CD-20 protein, there’s an antibody that targets a CD-19 protein that’s given out in relapse. There’s another antibody drug – there’s actually two antibody drug conjugates. So, an antibody that targets the protein on the cells that are attached to a chemo, that’s given. Or there’s different chemotherapy and then even some oral therapies.

Katherine:

Okay. So, there’s a lot of different options available for people.

Dr. Maddocks:

Correct. And there’s always clinical trials. So, there’s always the option to find something where we’re studying some of these newer therapies. They’re therapies in combination.

Katherine:

Well, that leads us right into emerging options and I’d like to talk about that. Have there been any recent developments in how DLBCL is treated?

Dr. Maddocks:

There had been recent developments. So, the CAR T-cell therapy, there is now three approved options for patients. And so, even patients who maybe are older and not considered candidates for a stem cell transplant because of other medical factors, might be able to get the CAR T-cell therapy. This is now, again, approved in the second line. There are a couple antibody drug conjugates, polatuzumab (Polivy) and loncastuximab (Lonca, Zylonta), they target proteins called CD-79 and CD-19.

And the polatuzumab’s the one that probably is going to be available for part of the front-line treatment in the future. There’s the antibody __ and lenalidomide. These are all approved therapies in the relapse setting. There are also therapies that are being studied and showing promising activity, which we think are probably likely to be approved in the future. There’s something particularly called bi-specific antibodies.

So, this targets a protein on the tumor cell but also a protein on the T cell. So, remember I said the T cells aren’t functioning. So, this targets the protein on the lymphoma cell but then targets a protein on the T cell to engage it to attack the lymphoma cell.

Katherine:

Right. Combination approaches?

Dr. Maddocks:

Yeah. So, there are a number of combination approaches under study a lot of the therapies that I mentioned, like the bi-specific antibodies, the antibody drug conjugates. These are all therapies that – they have side effects – I hate to say they’re well-tolerated – they have side effects but their side effects are such that they can be combined with other agents, that have different toxicities that are combined with each other. And so, there’s a lot of ongoing trials looking at combining these. There’re also oral targeted therapies that target proteins that are known to help the lymphoma cells survive and these are modulator therapies, BTK inhibitors, other inhibitors, that are being evaluated and used in combinations.

Katherine:

Thanks, Dr. Maddocks. That’s really helpful information. So, now that we understand more about DLBCL and how it’s treated, let’s talk about self-advocacy and how patients can engage in their own care. Why is it so important for patients to have a voice in their decisions?

Dr. Maddocks:

Well, I always tell my patients that they are the person most invested in their selves and their outcomes. As a care team, we certainly are invested in them and we want them to do well but they’re the one that knows their body, they know what’s going on, they’re the one that has to, essentially, live with all these outcomes. So, they have to be invested in what’s going on, they have to be invested in making sure that they know their care team is informed of things because we only see them in different periods of time and we’re not with them all the time to know what’s going on.

Katherine:

Right. It’s not always easy for patients to speak up. So, I’d like to debunk some common misconceptions that patients have, that may be holding them back. First one is, “I’m bothering my doctor with all my questions.” Is that true?

Dr. Maddocks:

That is not true at all. So, the best thing is an informed patient. So, I want to answer all their questions. “What is the disease or diagnosis?” “What are the treatment options?” “What do we know now?” “What are we learning?” I need to know what’s going on. I always tell my patients that I can’t help them with what I don’t know. So, if somebody shows up, they get once cycle of treatment and they show up for a second cycle and they’ve had all these problems and never called or notified me, first of all, we weren’t able to help them. There’s a lot of things we can do to help them and if we don’t know what’s going on, we can’t help.

And second, that might impact that second treatment, whereas knowing and knowing that sooner, we can plan to make changes.

Katherine:

Yeah. That’s really good advice. Here’s another one. “My doctor’s feelings will get hurt if I get a second opinion.”

Dr. Maddocks:

Not at all. So, I always encourage patients that they should get a second opinion, third opinion, whatever they need. No. 1, I think it’s important that a patient feels comfortable with their diagnosis and their treatment

plan because I really think that things go better if they understand that and they’re comfortable. If they’re always doubting what’s going on, it’s really hard to develop that trusting relationship. And I think it’s very important that a patient has a trusting relationship with their care team.

I think most of the time, when you get a second opinion, you’re probably going to hear or get the same advice. And so, that helps a patient to feel comfortable. Sometimes, there may be clinical trials out there that your doctor didn’t know about, that are options, and a doctor’s always going to be happy if there’s something out there available, that might make the patient outcome better, that they didn’t know about.

And lastly, I would say there are a lot of doctors who treat all types of cancer and there are some doctors that specialize in certain types of cancer. And so, if you were seeing a doctor who treats multiple different kinds, but want to see a doctor who specializes in a particular kind, they may be aware of a recent trial or a recent development that your doctor doesn’t know. Not because there’s anything wrong with that doctor, it’s just that there is so much data to keep up with these days, in cancer, that a specialist might be able to provide a point of view that somebody else doesn’t know.

Katherine:

Yeah. Another question or comment is, “There isn’t anything that could be done about my symptoms or treatment side effects. So, why should I even say anything?”

Dr. Maddocks:

That’s a great question but the thing is, a lot of times there are things. So, the one thing is, some of the treatments we use for some of our cancers, including lymphoma, have been around for a really long time. But some of the things that have changed, are our supportive care or our ability to treat patient side effects. So, I think that it’s always important that patients let us know if they’re having side effects because maybe nausea – so, we give medication to prevent that.

Usually, I send patients home with two different types of nausea medication. But if that’s not helping, I have more than two in my toolbox, I just don’t know to prescribe them if the typical things aren’t helping. So, a lot of times, there are things that we can do. Sometimes you have to tweak the dosing of the chemo, but really, the only way you can help with symptom management is if you know somebody’s having symptoms.

Katherine:

Right. So, when somebody starts to have side effects from the treatment, should they contact their care team right away?

Dr. Maddocks:

Yes. They should contact their care team right away. There are certain side effects, like having a fever during chemo, where they really need to go to the emergency room to be evaluated, to make sure it’s nothing. Because an infection can be very serious when you’re getting chemotherapy. Other side effects that are less emergent but, yes. Most of the time there’s a patient number that patients can call, where they can seek, like a nurse help line, where they can seek assistance, and that call can be escalated depending on the symptoms and what needs to be helped.

But I think, again, it’s important that we know what’s going on so we can help patients. And then, if something needs to be further investigated – because occasionally there will be something that’ll make us think, “Oh, we really need to evaluate this patient because what if it’s more than what it seems?”

Katherine:

Right. Are there any other misconceptions that you hear about from patients?

Dr. Maddocks:

I think, just in general, thinking about the patient taking care of themselves. So, a lot of times there can be resources that patients have questions on. Things like exercise. Things like nutrition. Things in the environment that they can be exposed to. Just different things. I think it’s always important that you ask your care team if there’s any question because they’re going to best be able to tell you versus just assuming something.

There’s a lot of good information that patients can get from educational sites. There’s a lot of good information on the internet but there’s also a lot of bad information, or inaccurate information on the internet. So, I think it’s great for patients to use resources and educate themselves but I think that it’s always good to confirm with your care team. Myths versus facts.

Katherine:

Yeah. Yeah. That’s really important. Do you recommend that patients continue getting vaccines? For COVID, for flu?

Dr. Maddocks:

Yes. So, particularly, when you look at lymphomas, this is a cancer of the immune system. The cancer can make your immune system compromise the treatment. While you’re getting treated makes your immune system compromised. And even for a period after treatment, your immune system can be compromised. So, it’s important to protect yourselves against infection. Sometimes the efficacy of vaccines in the middle of treatment might not be as good as not being on treatment.

But that said, there’s no data that the vaccines are harmful. You do have to be careful about live vaccines when you’re under treatment, and you should ask your doctor about not the typical vaccines, of course. But I think that it’s very important to take every step that patients can, to try to prevent themselves from battling something in addition to them already undergoing treatments, their body’s already going through a lot.

And so, anything that we can do or they can do to help prevent them from dealing with more than they already are, I think is important.

Katherine:

To close, what would you like to leave the audience with? Do you think that people can feel hopeful about the tools available to treat DLBCL?

Dr. Maddocks:

Yeah. I think, if you look at the progress we’ve made in the last five years, the last drug approved was rituximab in the early 2000s, and now in the last five years, we have had numerous therapies approved. Now it looks like we’re changing front-line therapy and numerous therapies that relapse. So, there’s a lot of – these are all promising therapies, some of them potentially curing patients that we weren’t able to cure before.

And so, they’re more available to patients. There’s a lot of promising drugs in clinical trials. And so, I think it’s hard to deal with a diagnosis but there are options for patients, both initially and at relapse, and I think seeking out what’s available, both to you and in clinical trials, is important to helping further improve outcomes.

Katherine:

Yeah. Dr. Maddocks, thank you so much for taking the time to join us today.

Dr. Maddocks:

Thank you so much. It’s been a pleasure.

Katherine:

And thank you to all of our collaborators. To learn more about DLBCL and to access tools to help you become a more proactive patient, visit powerfulpatients.org. I’m Katherine Banwell. Thanks for being with us today.

Thriving With Prostate Cancer: What You Should Know About Care and Treatment

What does it mean to thrive with advanced prostate cancer? Dr. Rana McKay discusses the goals of advanced prostate cancer care, reviews current and emerging treatment options, and shares advice for playing an active role in healthcare decisions.
 
Dr. Rana McKay is a medical oncologist at UC San Diego Health and an associate professor in the Department of Medicine at the UC San Diego School of Medicine. Learn more about Dr. McKay, here.
 
 

Katherine Banwell:    

Hello and welcome. I’m Katherine Banwell, your host for today’s program. Today we’re going to focus on how patients can aim to live and thrive with advanced prostate cancer. We’re going to discuss treatment goals and the role patients can play in making key decisions. Before we get into the discussion, please remember that this program is not a substitute for seeking medical advice. Please refer to your healthcare team about what might be best for you. Well let’s meet our guests today. Joining me is Dr. Rana McKay. Dr. McKay, welcome. Would you please introduce yourself?

Dr. Rana McKay:     

Of course. Thank you so much for having me. My name is Rana McKay and I’m a GU medical oncologist at the University of California San Diego.  

Katherine Banwell:    

Excellent. Thanks so much for taking time out of your schedule to join us. Since this webinar is part of PEN’s Thrive series, I’d like to ask you from your perspective, what do you think it means to thrive with advanced prostate cancer?

Dr. Rana McKay:        

That’s a very good question and I think that’s what um, a lot of patients want to actually you know, do in their day-to-day existence. I think it means that they are combatting their disease. They’re taking a proactive role in um, you know, uh tackling um, their illness. They um, are uh, attentive to sort of doing the activities of daily living that really bring them joy and satisfaction and happiness and setting up a treatment plan that is a mutually agreed upon treatment plan with their clinician. That they have buy-in on. That their caregivers have buy-in on. That allows them to do the things that they love to do while keeping their cancer at bay.

Katherine Banwell:    

Okay. Thank you for sharing your insights. Before we move onto treatment, I mentioned that this webinar is focused on advanced prostate cancer. What does it mean for prostate cancer to be considered advanced?

Dr. Rana McKay:        

So, generally what that means is that the cancer may have spread outside of the body – outside of prostate to other parts of the body such as the bone or the lymph nodes which is a common location where prostate cancer um, uh, can go. Additionally, it may mean that the cancer may have come back after um, it was initially treated with an intent um, to cure um, a patient. But then you know the PSA demonstrates um, that you know, there’s a rise in the PSA and the cancer is recurrent.

Katherine Banwell:    

As you mentioned uh, appropriate treatment is part of thriving. We’re going to talk about treatment approaches. But first, how would you define treatment goals?

Dr. Rana McKay:       

So, you know when I look at defining treatment goals it’s focusing on what do we wanna achieve from the standpoint of the cancer? Meaning, you know, what are objectives that are associated with patients living longer?

And then what are objectives um and strategies that we can set-up to make sure that patients are living better? So, I think the treatments are basically set-up to basically help you achieve those two goals. What can we do to help you live longer and feel better?

Katherine Banwell:    

Yeah. Well, let’s walk through the types of treatments that are used today to treat advanced prostate cancer. What are the treatment causes and who are they appropriate for? Let’s start with surgery, for instance.

Dr. Rana McKay:       

So, surgery is something that’s utilized uh, early on when people are diagnosed with cancer. It tends to be utilized when the cancer has not necessarily spread to other parts of the body but is still localized within the prostate itself or maybe there’s just some little bit of breakthrough in the capsule. Sometimes it can be used in people who have involvement of the prostate cancer in the lymph nodes. But it’s generally not utilized in people who have cancer that’s spread to other parts of the body.

Katherine Banwell:    

Mm-hmm. What about other treatment classes? What are they?

Dr. Rana McKay: 

So, radiation can also be utilized. Radiation is a treatment modality that can be used for people with localized disease and um, also it can be utilized for people with advanced disease to treat the primary tumor.

Additionally radiation therapy can be used to help treat symptoms um, if there’s a bone lesion causing pain or other areas that are causing discomfort. Sometimes radiation to those areas um, can um, mitigate pain. When I think about the treatment classes for prostate cancer um, they generally break down into several categories. The first um, um, most predominant category is the hormonal therapy category. Hormonal therapies are really the backbone of treatment for men with prostate cancer and they include the more traditional hormonal therapies that really work to just drop testosterone. So, just LRH – L – LRHA agonists and antagonists and also, they include um, newer hormonal therapies in the form of pills that really target um, strategies at also affecting testosterone function and testosterone production. Another class is also the chemotherapy agents. There are two FDA approved chemotherapies for prostate cancer that are life prolonging and um, uh there’s a certain role for uh, chemotherapy for people with advanced disease.

There’s also immunotherapy that can be utilized. Um, there’s a um, uh, vaccine therapy that’s actually one of the first uh, FDA vaccines for any solid tumor that’s proving in prostate cancer that can be utilized. There’s also radio pharmaceuticals.

So, these are specific agents that deliver um, a bits of radiation to specific areas. Whether it be radium 223 which targets the bone or the newest radio pharmaceutical, which was approved called uh, lutecium PSMA that um, basically delivers beta-radiation to little – sites of PSMA expressing cancer cells and the last category that I would highlight is the category of targeted therapy. There are uh, two targeted therapies for prostate cancer for patients who have like genomic alterations. Those include the drugs olaparib and rucaparib. So, as you can see there’s a wide spectrum of drugs that can be utilized to really keep this disease at bay.  

Katherine Banwell:    

Dr. McKay, for these treatment classes, what can patients expect as far as side effects?

Dr. Rana McKay:       

Absolutely. So, I think side effects – discussing side effects is a really important part of the discussion for selecting any one given therapy and in general, I think um, when we talk about the hormonal therapies one of the side effects that people can get is largely fatigue.

But a lot of the symptoms are related to low testosterone. And so, that may mean muscle loss, bone loss, um, you know, uh, hot flashes, um, fatigue, decrease libido, um… So, you those are things to consider with hormonal therapies. With the chemotherapies, I think the big ones we worry about are fatigue, risk of infection, um blood counts dropping a little bit, people getting tired, numbness and tingling in the hands and feet can occur, some swelling in the legs are common side effects for chemotherapy agents. With regards to the um, uh, immunotherapy with the vaccine therapy, it actually tends to be a fairly well tolerated treatment. Maybe some fatigue, rarely some dizziness or some lip – lip sensitivity, numbness with the – the process of kind of collecting the cells. But it actually tends to be fairly well tolerated.

The um, targeted therapies can cause fatigue. They can cause the blood counts to drop and can impact bone marrow function. There can be sometimes GI side effects. Nausea, um, rash, um and then the immune therapy, the pembrolizumab, that is FDA approved sometimes that can cause immune related adverse events which is kind of over activation of the immune system developing you know, what I’d call it as the itises. Colitis or pneumonitis which is inflammation of various organs and symptoms related to wherever that may be.

Katherine Banwell:    

When should a patient consider a clinical trial as a treatment option?

Dr. Rana McKay:        

So, I generally think that a patient should consider a clinical trial at almost every juncture that a – a clinical decision is being made. I think sometimes there’s this misperception that, “Oh. Clinical trials should only be utilized when I don’t have any other options.” Where in fact I would say clinical trials should be an option to discuss every single time a treatment is being changed. Um, because you know the ultimately the goal is to make sure patients are as I said, living longer and living better and um, you know, making sure that clinical trials are an option on the table at every juncture is really a key step in that process.

Katherine Banwell:    

What are the benefits of being part of a clinical trial?

Dr. Rana McKay:       

So, I think there’s a lot of benefits. I think um, you know, uh for patients with advanced disease it may provide access to drugs that they otherwise not necessarily have access to.

Um, so the standard of care therapies you know, we can prescribe those at any juncture. They’re standard of care. But clinical trials um, really offer an opportunity to experiment with a uh, uh another agent um, and doesn’t necessarily take away from the standard of care options.

I think um, the other thing is you know, I think a lot of patients with advanced prostate cancer, they um, they – want to give back to the community. They want to leave a legacy. They want to contribute to the science. They wanna be a part of that mission to make tomorrow better than today for men with prostate cancer and I think participating in clinical trials can really help achieve that goal. Um, and also benefit the individual as well.

Katherine Banwell:    

What about emerging treatments? Are there any that patients should know about?

Dr. Rana McKay:       

Absolutely. So, there’s a lot of treatments that I think are currently undergoing extensive testing.

There’s um, additional uh, targeted therapies um, for example CDK46 inhibitors that are being tested broadly in the um, um hormone resistant space and the newly diagnosed setting. Um, there’s um, also AKT inhibitors. There are other targeted therapies that are being tested. There’s novel hormonal treatments that target resistant pathways like the antigen receptor degraders. There’s a slew of immunotherapy options um, cell therapy, bi-specific antibodies that are also being tested. So, there’s a lot of really exciting and novel treatments that are looking at overcoming resistance for people with advanced disease.

Katherine Banwell:    

Hm. Do you recommend that men with advanced prostate cancer get the COVID vaccines and the boosters?

Dr. Rana McKay:       

Very good question and in general, I do recommend the vaccines. Especially for patients with advanced disease and those that are on therapy. Um, several studies have demonstrated that patients with cancer are at increased risk of having complications related to COVID and particularly patients that are on active treatment with cancer are at even greater riskSo, um, I would definitely recommend vaccination as a preventative strategy to prevent really complications related to COVID.

Katherine Banwell:    

Mm-hmm. Thanks, Dr. McKay. That’s helpful information. Since prostate cancer affects men differently. Let’s review what factors could impact which treatment is right for their individual disease. How about we start with symptoms?

Dr. Rana McKay: 

So, yeah. I mean absolutely. I think symptoms are definitely something that plays into effect.

Um, sometimes when patients are first diagnosed, they may not have symptoms. But, you know, boney pain. Um, Symptoms of urinary obstruction. You know, there’s specific um, uh, treatments and uh, strategies that we can deploy to help with those kinds of things. Um, you know other factors that I think I – we take into account when we’re making decisions about which agent should any one patient receive is where are there sites of metastases? Um, is there disease just in the bones and lymph nodes or are there other organs involved? Um, what’s the genomic make-up of the tumor? Um, there are certain treatments that we would utilize if someone had a certain specific you know, uh genetic make-up for their tumor. You know, other things that are really important are what kind of drugs has the patient seen before or has that tumor been exposed to? Because that also helps us strategize for what to give them in the future.

Katherine Banwell:    

Do you take into consideration the patient’s comorbidities and their age and overall health? Things like that? 

Dr. Rana McKay: 

Absolutely. Yeah. I think we need to absolute take that in account. I think – I think age is one thing. But I think functional status is um, just as – as important as the actual number itself because people are very different regarding um,  the things that they can do at various uh, age limits and so, that absolutely takes into account weighing the side effects of any given therapy and how that may interact with someone’s existing comorbidities and it may be something that we have to work with a team of other doctors to basically make sure that there is comprehensive, well-rounded care for any one patient.

For example, some therapies may increase the risk of hyper-tension or increase the risk of volume overload and so, if somebody has issues with that already we may have them see a cardiologist so we can make sure that um, you know, we’re kind of addressing the totality of the patient experience. 

Katherine Banwell:    

What do you mean by volume overload?

Dr. Rana McKay: 

Uh, volume overload I mean if they’ve got too much fluid on board. So, maybe if they have heart failure or something like that and we have a therapy that’s gonna cause them to retain fluid. And so then, we would have to work with a cardiologist to make sure that they don’t run into issues.

Katherine Banwell:    

Right. That makes sense. What are the common symptoms of advanced prostate cancer?

Dr. Rana McKay: 

So, um, you know, I would probably say there common symptoms and just because somebody has these symptoms doesn’t mean they have prostate cancer. But fatigue, weight loss, urinary symptoms, trouble urinating, you know, benign prostatic atrophy is one of the most common symptoms or most common conditions in men and um –

Katherine Banwell:    

What does that mean?

Dr. Rana McKay: 

Um, so sort of benign enlargement of the prostate. Um, you know that’s a common phenomenon that happens with age and it can affect somebody’s ability to urinate.

Um, but um you know uh, sometimes with prostate cancer it can also impact somebody’s ability to urinate. Their stream, their flow. Um, they may have rectal discomfort. They may feel tired, boney pains. Usually, I tell patients you know persistent progressive symptoms that are just you know not going away, not getting better. Those need to be looked at by a physician to evaluate further. 

Katherine Banwell:    

Mm-hmm. You mentioned genetic mutations. Should patients advocate for genetic testing if they haven’t had it already?

Dr. Rana McKay: 

Um, it all depends on uh, what kind of uh, where they are in the process. So, for most men who have advanced disease, they should undergo genetic testing of both their tumor, and it is also recommended to do hereditary testing for patients who have advanced disease. Um, and that information may not necessarily be utilized at the exact time that the test is done.

But it may be utilized down the road for treatment options at a later time point. Um…

Katherine Banwell:    

Mm-hmm. Once a man is undergoing treatment for advanced prostate cancer how are they monitored to see if it’s actually working?

Dr. Rana McKay: 

So, a lot of ways. So, one is by just you know, visiting with the patient. Making sure that their symptoms are in check. Making sure that they’re not developing new um, aches or pains that are worrisome. It’s by checking their labs um, in addition to their organ and bone marrow function. We would check their PSA. Um, and PSA isn’t the whole story. But it is one factor that contributes to us determining whether treatment may or may not be working. It’s also doing intermittent scannings. So, um, you know, uh, CT scans of the organs, of the lymph nodes. Bone scan and now we actually have PSMA based imaging which can be integrated to help um, assess uh, where the disease is and um, not yet being utilized to assess whether something is working because we haven’t really defined the criteria there.

But um, it can be utilized as well.

Katherine Banwell:    

Mm-hmm. Dr. McKay, how would you define precision or personalized medicine and how close are we getting to personalized medicine for advanced prostate cancer?

Dr. Rana McKay: 

Yeah. So, what I – how I define it is the right treatment for the right patient at the right time. It’s basically you know, based off of somebody’s genomic profile of their tumor and ideally that genomic profiling is done close to the time that that treatment is being initiated. So, within six months or twelve months of somebody starting a given therapy we understand the genetic make-up of the tumor. The tumor has you know, for example a BRCA1 alteration and we know that olaparib is a drug that can be utilized and has demonstrated efficacy for people that have that mutation and then we would use that agent. So, it’s basically trying to um, personalize therapy based on the genomic information of that tumor.

And um, I think we are getting there. There are actually trials now that are being launched that are bio-marker driven trials with bio-marker selected therapies for patients based on -off of not just DNA but also RNA to help with um, allocating a given therapy.   

Katherine Banwell:    

What do you feel are the common obstacles to care for a man with advanced prostate cancer?

Dr. Rana McKay: 

So, I think that there can be a lot of obstacles with regards to um, you know, comprehensiveness of the care. You know it’s one thing to sort of, “Okay. This is the next therapy to treat you with.” But there’s a lot of side effects that can happen with any one given therapy and ensuring that there is open dialogue between um, uh a man and his – his clinician and caregivers.

You know, I think that that can sometimes be a hurdle. Like that open communication can be so important. It’s not just about picking the next best drug but it’s ensuring that there’s sort of comprehensiveness in care. I think a lot of um, you know, patients they may not necessarily know and they’re really kind of dependent on their clinician to sort of go through the compendia of options that may be available and why one may be better than the other for any one given scenario. So, I think it’s like that shared decision-making, that open dialogue.

Um, you know, I think also thinking about advocacy networks, I think um, you know, I can say things until I’m blue in the face like this is what being on ADT feels like. But I think sometimes actually connecting with another patient whose gone through the same experience who can kind of weigh in from the patient perspective like what it actually feels like, I think is not to say a hurdle. But I think we can do a better job as a medical community of making those networking connections available for patients so they can be a part of a broader community of individuals like them going through the same thing they’re going through.

Katherine Banwell:    

Yeah. It helps to know that there are others going through exactly what you’re going through or similar symptoms. We received a patient question prior to the program. What is the difference between my PSA level and Gleason score?     

Dr. Rana McKay: 

Yeah. So, very good question. So, Gleason score is something that is determined based off a pathologic assessment. So, it’s basically you know, a biopsy is done from the prostate or the – the surgical specimen from the removal of the prostate is looked at under the microscope and a Gleason score is based off what something looks like underneath a microscope and ideally, a Gleason score is given really only for the prostate – for tissue derived from the prostate.

So, if somebody has a bone biopsy for example or a lymph node biopsy, they’re not going to necessarily get a glycine score per se. It’s been – been validated from the prostate itself and ideally, also, an untreated prostate. So, if somebody has you know had radiation therapy and then has a biopsy, the Gleason score there is – there should not necessarily be a notation of what a Gleason score is. It’s really an untreated prostate. Now PSA is prostate specific antigen and it’s a protein that’s made from the prostate gland and it’s found in circulation. PSA doesn’t hurt any – the actual you know, molecule itself is – is innocuous. It doesn’t hurt anything. It’s just a marker of um, sometimes can be a marker of burden of disease in prostate cancer and I think sometimes we as clinicians do you know, you know a disservice to some patients because I think we fixate – we can fixate a lot on PSA.

But PSA is not the whole story and it’s one factor of several factors that we take into account in determining whether someone needs treatment or whether a treatment is working or not working.

Katherine Banwell:    

Why should patients feel confident using their voice in partnering in their care? Do you have any advice?

Dr. Rana McKay: 

Um, I mean it’s – it’s absolutely important for patients to share their perspective and for there to be shared decision making at every single juncture along the way. Even around decisions to not treat. So, you know, I think it’s a lot of um – there’s a lot of grays in prostate cancer and a lot of art in deciding what treatment to do and at what specific time and for any given patient given the values that that patient brings to the table, they may come back with a different decision compared to another patient. So, without the patient you know voicing what their values are it’s impossible to make a treatment decision.

So, it is so critically important to have that open communication with your clinician.

Katherine Banwell:    

So, in addition to that – in conjunction with that, should men diagnosed with advanced prostate cancer consider a second opinion or consulting with a specialist?

Dr. Rana McKay: 

I think it’s always a great idea to get a second opinion. Um, you know, I think that um, you know, it will only empower individuals um, when they seek sort of a second opinion to either confirm um what their physician has already told them and then they have reassurance that they’re on the right path or maybe provide some new um, novel insights that they can take into consideration and just think about how that could be applied to them. So, you know, I think that a second opinion is always really valuable.

I will balance that by saying um, sometimes it can be detrimental if there’s lots of opinions because I will say that coming to a consensus when there’s lots of different specialists that are involved, and everybody makes the soup a little bit differently –

Katherine Banwell:    

Yeah.

Dr. Rana McKay: 

Sometimes that I think that can actually um, hurt patients in being able to actually come to a decision because then they’re like, “I don’t know what decision to make. This person said do this. This person said do that. This person said do that.” Um, and so that can sometimes be um, detrimental. But a second opinion, I do always encourage it. I do always value it. But I always want the patient to bring it back to me so I can share with them and discuss, “Okay. I understand. This is why x said X-Y-Z. This still aligns. This still doesn’t.” They need a quarterback like you know, it’s one thing to sort of get second opinions. But I think every man with prostate cancer should have a quarterback that’s driving their care and advocating for them.

Katherine Banwell:    

Yeah. How can patients find specialists near them?

Dr. Rana McKay: 

So, um, I will say that they are national comprehensive cancer institutes. They’re all across the country in rural areas and not. I think um, you know finding the closest NCI designated comprehensive cancer center close to you is probably a good place to start and identifying who is seeing um patients with genetic urinary malignancies or prostate cancer at that facility is a good place. I think the prostate cancer foundation is an excellent advocacy group for patients with prostate cancer. They have a tremendous amount of resources um, to help connect patients with um, clinicians, and other resources um, in their journey with cancer.

Katherine Banwell:    

How can caregivers best support their loved ones?

Dr. Rana McKay: 

So, I think being present is one of the first things. Um, you know, I think that uh, um, you know, uh, being you know, supportive, being present.

Like you know, attending the doctor – doctor’s visits. It doesn’t necessarily have to be every single doctor visit. But those critical doctor visits where um, you know clinical decisions are being made. I think it’s really important also um, to there may be some hesitancy on the part of patients to sometimes be open or vocal with their clinicians about various aspects of what they may be experiencing at home, or they may be undermining or sort of – I think caregivers can help in sort of giving an outsider’s perspective. “Well, this is how things are going at home,” and “You know this is how things are,” and “These are the things that we value and we’re gonna go on this family trip,” and “This is a big-ticket item for us. So, how can we work around planning a treatment plan that allows us to do that?” So, I think it’s really important.

Katherine Banwell:    

ASCO was held in June. Is there news from the conference that patients should know about?

Dr. Rana McKay:        

Yeah. So, I think some of the biggest therapies in prostate cancer that was one of the newest therapies that was just FDA approved is um, Lutetium PSMA. It’s um, a radioligand therapy that targets specifically PSMA expressing cells. Um It delivers a little bit of beta radiation to those cells. Um, that therapy was approved this past Spring and there highlights at ASCO about the utility of this therapy. Um, and again, there’s a series of novel compounds that are being tested in prostate cancer not yet ready for prime time but a lot of exciting work that’s being done um, to try to get new drugs that work better for our patients.

Katherine Banwell:    

Mm-hmm. Going back to ASCO and new developments, how can patients stay informed about research developments like – like these that happen at ASCO.

Dr. Rana McKay:

So, very – very good. I think there’s a lot of networks for people with prostate cancer. I think one like I mentioned, the prostate cancer foundation it’s a wonderful community. Um, that really focuses on making sure that up to date, you know, uh, evidence-based data is uh, distributed to patients in a manner that is – that makes sense. That’s there’s not a lot of medical jargon and so I think that the PCF is really a wonderful resource. Uh, ASCO itself also has um, you know patient interfacing you know, materials through their website.

American Cancer Society does as well. Um, the American Cancer Society can also be a wonderful resource for patients that are newly diagnosed or going through treatment.

Katherine Banwell:    

Mm. Before we end the program, Dr. McKay, I wanted to ask. Are you hopeful that men can thrive with advanced prostate cancer?

Dr. Rana McKay:       

Oh, I am absolutely hopeful that they can thrive. I mean that is um, the name of the game and I think there’s a lot of um, uh, people who can look to for motivation.

Um, uh, to basically show that despite treatment, despite having advanced disease patients can thrive and continue doing all of the things that they love that give them joy and satisfaction in their lives.

Katherine Banwell:    

It seems like there’s a lot of progress and hope in the field which is good. Dr. McKay thank you so much for taking the time to join us today.

Dr. Rana McKay:       

Of course. My pleasure.

Katherine Banwell:    

And thank you to all of our partners. To learn more about prostate cancer and to get tools to help you become a proactive patient, visit powerfulpatients.org. I’m Katherine Banwell. Thanks so much for joining us today.

What Do You Need To Know About Waldenström Macroglobulinemia (WM)?

What Do You Need To Know About Waldenström Macroglobulinemia (WM)? from Patient Empowerment Network on Vimeo.

What should you or your loved ones know following a Waldenström macroglobulinemia (WM) diagnosis? This animated video reviews symptoms of WM, current treatment options and provides key advice for becoming a proactive WM patient.

See More From The Pro-Active Waldenström Macroglobulinemia Patient Toolkit

Related Programs:

Understanding Waldenström Macroglobulinemia and How It Progresses

Understanding Waldenström Macroglobulinemia and How It Progresses

Waldenström Macroglobulinemia Treatment Decisions: What’s Right For You? Resource Guide

Current Waldenström Macroglobulinemia Treatment Approaches

Current Waldenström Macroglobulinemia Treatment Approaches


Transcript:

Waldenström macroglobulinemia, also called Waldenström or WM, is a rare, slow-growing type of non-Hodgkin lymphoma that starts in a person’s white blood cells. Healthy blood cells are crowded out when the bone marrow produces too many malignant white blood cells, and these produce an excess of a protein called immunoglobulin M or IgM.  

Waldenström can cause symptoms that may include: 

  • Fatigue  
  • Unintended weight loss 
  • Fever 
  • Swollen lymph nodes 
  • Enlarged spleen 
  • Unexplained bleeding 
  • And numbness in the hands or feet, which is called peripheral neuropathy 

It’s important to note that not all patients with Waldenström have symptoms when they are diagnosed, and so those patients won’t need treatment immediately. Instead, they are put on an approach called “watchful waiting” or “active surveillance.” This means patients are monitored regularly for indicators that it is time to begin treatment – such as the onset of symptoms.  

So, how is Waldenström typically treated? 

Every patient is different. When making treatment decisions, factors such as the extent of disease and symptoms can impact available options. And potential side effects, a patient’s age, health, and lifestyle are also taken into consideration. 

The good news is that there are several treatment options for Waldenström, including: 

  • Chemotherapy  
  • Targeted therapies such as proteasome inhibitors, BTK inhibitors and BCL2 antagonists; 
  • Immunotherapy  
  • And, clinical trials, which study emerging treatments for Waldenström. It’s important to ask your doctor if there is a trial that may be right for you. 

Less commonly used treatments for Waldenström are stem cell transplant and radiation. 

In the case of hyperviscosity or other IgM-related symptoms, plasmapheresis, also known as plasma exchange, may be used as a temporary measure to manage the issue.    

Now that you understand more about Waldenström, how can you take an active role in your care?  

  • First, continue to educate yourself about your condition. 
  • Understand the goals of treatment and ask whether a clinical trial might be right for you.
  • It also important to consider a second opinion or consult with a specialist following a diagnosis.
  • And, write down your questions before and during your appointments. Visit powerfulpatients.org/wm to access office visit planners to help you organize your thoughts.
  • Bring one or more friends or loved ones to your appointments to help you recall information and to keep track of important details.
  • Finally, remember that you have a voice in your care. Don’t hesitate to ask questions and to share your concerns. You are your own best advocate. 

 To learn more about Waldenström macroglobulinemia and to access tools for self-advocacy, visit powerfulpatients.org/WM. 

How Is Advanced Prostate Cancer Treated?

How Is Advanced Prostate Cancer Treated? from Patient Empowerment Network on Vimeo.

What therapies are available to treat advanced prostate cancer? Expert Dr. Atish Choudhury reviews current treatment options.

Dr. Atish Choudhury is the Co-Director of the Prostate Cancer Center at Dana-Farber/Brigham & Women’s Cancer Center.
Learn more about Dr. Choudhury here.

See More from Engage Prostate Cancer

Related Resources

When Should Prostate Cancer Patients Consider a Clinical Trial?

When Should Prostate Cancer Patients Consider a Clinical Trial?

Which Factors Impact Advanced Prostate Cancer Treatment Decisions?

Which Factors Impact Advanced Prostate Cancer Treatment Decisions?

An Expert Debunks Advanced Prostate Cancer Myths

An Expert Debunks Advanced Prostate Cancer Myths


Transcript:

Katherine:                  

So, let’s walk through the types of therapy that are used today to treat prostate cancer. If you would start with surgery?

Dr. Choudhury:            

Sure. So, surgery is a radical prostatectomy, and they take out the prostate – they take out neighboring structures called seminal vesicles, they take out the surrounding fat, and they’ll usually take out some neighboring lymph nodes as well. And there are advantages of surgery in that when the prostate is out, the pathologist can examine the whole prostate front to back, side to side, as well as those neighboring structures to really understand the stage of the cancer – “Where is it?” – and also, the grade – “Is it a high-grade cancer, a low-grade cancer, somewhere in the middle?”

And it really helps guide “What is the risk of developing recurrence afterwards, and are there further treatments that we should be giving after the surgery? For example, radiation to the prostate bed to decrease the risk of recurrences. Surgery does have its own set of potential side effects and complications, so it’s not appropriate for everyone, but in general, that’s the process.

Katherine:                  

What other treatment options? You mentioned radiation. What else is there?         

Dr. Choudhury:          

Yeah, so, radiation comes in two forms: there’s seed radiation, which is implantable little radioactive pellets that are implanted throughout the prostate. And then, there’s external radiation, and that can be given in several forms and over several schedules that it’s really important to discuss with the care team.

The other forms of treatment that people on this call might’ve heard about or read about are in a category called “focal treatments,” and these are basically ways to – and the term we use is a blade but zap – an area of the prostate using lasers, or high-intensity ultrasound, or with freezing an area of the prostate, or with something called “irreversible electroporation.”

These are basically all ways to, again, zap an area of the prostate either with heat or with cold with the intention of killing off cancer cells in an area. And the trouble is that none of these treatments have actually been demonstrated to improve outcomes related to prostate cancer compared to just surveillance alone. And it does complicate, sort of, the monitoring afterwards to see if something has come back.

But there might be very selected patients where there’s an area of cancer that’s seen on a scan – like an MRI – with no cancer seen outside of that area who might decide to pursue this possibility of focal treatment with the goal of maybe putting off the need for something like radiation or surgery. But that’s something that really should be discussed with a multidisciplinary team so that people really understand what they’re getting into in terms of risks and potential benefits.

So, those treatments are not really considered standard at this time.

Katherine:                  

What about hormonal therapy?        

Dr. Choudhury:   

Yeah, so, hormonal therapy plays a role in the treatment of prostate cancer, really depending on the stage and the other treatments that are being considered. So, for example, if a patient is going to surgery for a localized prostate cancer, in general, we wouldn’t use hormonal treatment either before or after the surgery unless they’re planned for radiation after the surgery.

However, for patients who have intermediate risk or higher localized prostate cancer and are getting radiation, then we will often recommend hormonal treatments, which are basically testosterone-lowering drugs, to make the radiation work as well as possible. And then, for patients who have advanced cancer beyond where surgery or radiation is going to be of help, then, hormonal treatments are important to treat the cancer wherever it is.

And that’s because prostate cancer cells, wherever they are in the body – wherever they’re in the prostate itself, or in lymph nodes, or bones, or other organs – depend on the testosterone in your body to supply a fuel – to support its growth and survival.

And so, lowering the level of testosterone in the body basically deprives the cancer cells of that fuel and starts a process of killing cancer cells even without any need for radiation, or chemotherapy, or things like that. However, hormonal treatments are not curative. They don’t kill all the cancer – they kill some and put the rest to sleep. And so, if you stop the hormonal treatment, the cancer will grow back, and that’s why it’s not a treatment on its own for localized prostate cancer.

And that’s also why, for prostate cancer that’s spread, we often add on additional medications to the testosterone-lowering drugs to be more effective at really killing the cancer wherever it is compared to the testosterone suppression alone.

Katherine:                  

Oh, I see. For advanced disease, what treatments are available for patients that are hormone-sensitive or -resistant?

Dr. Choudhury:           

Yeah, so “hormone-sensitive” means that the cancer has advanced, but the patient hasn’t started on testosterone-lowering drugs yet. And so, as I had mentioned, testosterone lowering is really the backbone of treatment of these patients. And so, there are additional treatments that have been demonstrated previously to be effective after testosterone-lowering by itself stops working, and these include a chemotherapy drug called docetaxel. And in addition, there are more potent hormonal drugs called abiraterone, enzalutamide, apalutamide, and darolutamide.

And the role of these other drugs is to block hormonal signaling within the cancer cells from hormones other than testosterone. And so, by doing the more potent hormonal drug in conjunction with the testosterone lowering, that leads to a much deeper response – much more tumor shrinkage – and, it turns out, also prolonged survival in patients treated with those combination treatments – compared top people who are treated with testosterone lowering alone and then receive these drugs later.

So, there’s something about treating more aggressively at the beginning in this hormone-sensitive state that plays out in prolongation of survival. And not only prolonged survival, but improved quality of life due to delaying the symptoms of cancer grown and progression.

Katherine:                  

Right.        

Dr. Choudhury:   

When we then talk about castration resistant disease, certainly we use the same classes of drugs, but then, there’s a wider armamentarium of things that we use that include, again, other kinds of chemotherapy.

There are radiation drugs, and an approved drug Radium-223. And there’s another drug on the horizon called Lutetium PSMA. There are immune therapy drugs – something called Sipuleucel-T – and then, this is also a situation where we do genetic testing of the cancer to understand if there’re certain –what we call “therapeutic vulnerabilities.”

Other treatment options that are available based on the genetics of the cancer that might be helpful in some people? And specific options include a chemo-immune therapy called “Keytruda” in a small subset of patients with particular genetic changes involving genes involved in mismatched repair of DNA. And then, there’s another set of targeted treatments called “PARP inhibitors” for certain sets of patients who have alterations in genes involved in homologous recombination repair of DNA.

So, that’s all very complicated, and so that’s why it’s important to get treated with high-volume providers of prostate cancer patients so that they’re really aware and onboard with these various treatment options that are available.

What Is Prostate Cancer Palliative Care?

What Is Prostate Cancer Palliative Care? from Patient Empowerment Network on Vimeo.

What is palliative care? Dr. Atish Choudhury discusses what palliative care involves for advanced prostate cancer patients.

Dr. Atish Choudhury is the Co-Director of the Prostate Cancer Center at Dana-Farber/Brigham & Women’s Cancer Center. Learn more about Dr. Choudhury here.

See More from Engage Prostate Cancer

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Transcript:

Katherine:                  

Dr. Choudhury, we received this question from an audience member prior to the program: What is palliative care?

Dr. Choudhury:           

So, palliative care is really a branch of medicine that helps with symptom management. And so, that symptom management doesn’t necessarily have to be end-of-life sort of symptoms relating to death and dying. It can be just along the way to help with managing the symptoms related to cancer and its treatment, but also to be kind of another medical provider to help with communication of goals of care – what’s really bothersome, what’s really important – so that we kind of incorporate those wishes and desires into the management decisions that we make.

So, a patient does not have to be at end-of-life to engage with palliative care. Certainly, even earlier engagement with palliative care can be helpful to maximize quality of life along the treatment journey. But as symptoms become more bothersome, certainly, our palliative care colleagues can be incredibly helpful – not just in helping manage pain, but also nausea, also depression and psychological side effects. So, they’re a really critical part of our treatment team.

Who Are the Members of a Prostate Cancer Care Team?

Who Are the Members of a Prostate Cancer Care Team? from Patient Empowerment Network on Vimeo.

Prostate cancer expert Dr. Atish Choudhury explains which experts comprise a prostate cancer care team. Dr. Choudhury encourages patients to take an active role as a member of their care team.

Dr. Atish Choudhury is the Co-Director of the Prostate Cancer Center at Dana-Farber/Brigham & Women’s Cancer Center. Learn more about Dr. Choudhury here.

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Which Factors Impact Advanced Prostate Cancer Treatment Decisions?


Transcript:

Katherine:                  

So, who is typically on a patient’s prostate cancer healthcare team?

Dr. Choudhury:            

Yeah. So, generally, the consultations here at Dana-Farber are multidisciplinary, with a medical oncologist, a radiation oncologist, and a urologic oncologist – so, a surgeon.

And so, if a patient is a good candidate for treatment to the prostate itself, then certainly, the surgeon and the radiation oncologist will talk about those treatments. And if the treatment is primarily with medications, then the medical oncologist will generally sort of take the lead. But there is often a role for local treatment to the prostate itself, even in cancer that’s spread beyond the prostate. So, that’s why the multidisciplinary consultation is so important.

Katherine:                  

Right. What do you feel is the patient’s role as a team member?

Dr. Choudhury:           

Absolutely. So, I think it is very important for the patient to make sure that they come into these multidisciplinary meetings with questions around “What is my stage?” “What are the choices?” “What do I expect with treatment? Without treatment? With the various treatment options?” And basically, to take in the advice that they’re getting from the different members of the multidisciplinary team, and really think about how that’s impactful for them and their goals for themselves and what they really hope for the short term and for the long term.

I think what gets tricky is that there’s really very not-great sources of information that’s out there online and in YouTube videos and things like that, and I think it does play an important role for the patient to really understand what are the real high-quality sources of information – they tend to come from academic medical centers like ours. And certainly, we do encourage second opinions at other high-quality, high-volume centers so that the patients understand that the recommendations that are being made are generally made based on the based data and with people with a lot of experience at treating their kind of cancer.

Katherine:                  

What about caregivers? How do they fit into the team?

Dr. Choudhury:             

Caregivers are critical because patients are not always the most expressive at, really, what their wants, and needs, and desires are. And especially when they’re on treatment, sometimes they’re not so expressive around the things that are bothering them on a day-to-day basis.

So, the caregivers are really important for communication with us to be kind of another set of eyes and ears in terms of kind of reporting what the patient’s symptoms are or what their goals or desires are that maybe they themselves don’t feel comfortable expressing. But they also play an important role in helping us with, kind of, lifestyle recommendations to the patient. Because certainly, much of the process of doing well with prostate cancer treatments is kind of lifestyle modifications – makes sure you’re eating healthy, exercising regularly – and the caregivers can play a very important role in making sure that patients stick to that kind of regimen as well.    

Katherine:                  

I would think one of the issues for a patient too is that just having a cancer can be overwhelming and can make it difficult for them to even remember all the questions and concerns that they have.

Dr. Choudhury:            

Yeah, that’s absolutely critical, and the caregivers play a very important role. So, often, people who are not partnered, for example, will just bring a friend to these appointments just to be that second set of eyes and ears.

How to Play an Active Role in Your Prostate Cancer Treatment and Care Decisions

How to Play an Active Role in Your Prostate Cancer Treatment and Care Decisions from Patient Empowerment Network on Vimeo.

What steps can you take to engage in your prostate cancer treatment and care decisions? Dr. Atish Choudhury discusses current and emerging prostate cancer therapies, reviews key treatment decision-making factors, and shares advice for self-advocacy.

Dr. Atish Choudhury is the Co-Director of the Prostate Cancer Center at Dana-Farber/Brigham & Women’s Cancer Center.
Learn more about Dr. Choudhury here.

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Using Your Voice to Partner in Your Prostate Cancer Treatment Decisions


Transcript:

Katherine:                  

Hello, and welcome. I’m Katherine Banwell, your host for today’s webinar. Today, we’re going to explore the goals of advanced prostate cancer treatment and discuss tools for playing an active role in your care decisions.

Before we get into the discussion, please remember that this program is not a substitute for seeking medical advice. Please refer to your healthcare team about what might be best for you. Joining us today is Dr. Atish Choudhury. Dr. Choudhury, welcome. Would you please introduce yourself?

Dr. Choudhury:        

Hello. Thank you so much for the invitation. So, I’m a medical oncologist at Dana-Farber Cancer Institute, and I’m the codirector of the prostate cancer center at the Dana-Farber/Brigham and Women’s Cancer Center. And I serve as the chair of the Lank Center for Translational Research as well, and ’t’s my pleasure to be here.

Katherine:                  

Thank you so much for taking the time out of your schedule to join us. Today, we’re talking about advanced prostate cancer.

What exactly does “advanced” mean in terms of this cancer?

Dr. Choudhury:          

Yeah. So, it’s actually a pretty broad term, and it can mean different things in different contexts. But generally, what it means is that it’s cancer that has extended outside of the confines of the boundaries of the prostate itself – either locally where it is into the surrounding fat around the prostate capsule or to local lymph nodes, where it could also spread to other parts of the body – like lymph nodes, bone, and other organs.

So, it can really mean different things depending on the context.

Katherine:                  

Before we get into the types of treatment available, let’s start by understanding the goals of treatment. What are the goals of advanced stage prostate cancer?

Dr. Choudhury:              

So, in general, the goal of treating any cancer is to a live a long, happy, healthy life with limited quality of life troubles from the cancer itself or its treatments. And so, for localized prostate cancer, that generally means treating with curative intent – that we give radiation or surgery, potentially in combination with hormonal treatments so that the cancer is taken care of and people can be cured and not need further treatments moving forward at all.

And there are situations, even in fairly advanced cases, where that’s a reasonable and accomplishable goal. And there are other situations that we might not be able to cure the cancer completely, but the treatments can be quite effective at keeping it under control and keep people with a very good quality of life so that prostate cancer is not a day-to-day burden for them and that they can survive with cancer for years, and years, and years.

Katherine:                  

It sounds like these goals would be determined with members of your healthcare team. So, who is typically on a patient’s prostate cancer healthcare team?

Dr. Choudhury:            

Yeah. So, generally, the consultations here at Dana-Farber are multidisciplinary, with a medical oncologist, a radiation oncologist, and a urologic oncologist – so, a surgeon.

And so, if a patient is a good candidate for treatment to the prostate itself, then certainly, the surgeon and the radiation oncologist will talk about those treatments. And if the treatment is primarily with medications, then the medical oncologist will generally sort of take the lead. But there is often a role for local treatment to the prostate itself, even in cancer that’s spread beyond the prostate. So, that’s why the multidisciplinary consultation is so important.

Katherine:                  

Right. What do you feel is the patient’s role as a team member?

Dr. Choudhury:           

Absolutely. So, I think it is very important for the patient to make sure that they come into these multidisciplinary meetings with questions around “What is my stage?” “What are the choices?” “What do I expect with treatment? Without treatment? With the various treatment options?” And basically, to take in the advice that they’re getting from the different members of the multidisciplinary team, and really think about how that’s impactful for them and their goals for themselves and what they really hope for the short term and for the long term.

I think what gets tricky is that there’s really very not-great sources of information that’s out there online and in YouTube videos and things like that, and I think it does play an important role for the patient to really understand what are the real high-quality sources of information – they tend to come from academic medical centers like ours. And certainly, we do encourage second opinions at other high-quality, high-volume centers so that the patients understand that the recommendations that are being made are generally made based on the based data and with people with a lot of experience at treating their kind of cancer.

Katherine:                  

What about caregivers? How do they fit into the team?

Dr. Choudhury:             

Caregivers are critical because patients are not always the most expressive at, really, what their wants, and needs, and desires are. And especially when they’re on treatment, sometimes they’re not so expressive around the things that are bothering them on a day-to-day basis.

So, the caregivers are really important for communication with us to be kind of another set of eyes and ears in terms of kind of reporting what the patient’s symptoms are or what their goals or desires are that maybe they themselves don’t feel comfortable expressing. But they also play an important role in helping us with, kind of, lifestyle recommendations to the patient. Because certainly, much of the process of doing well with prostate cancer treatments is kind of lifestyle modifications – makes sure you’re eating healthy, exercising regularly – and the caregivers can play a very important role in making sure that patients stick to that kind of regimen as well.    

Katherine:                  

I would think one of the issues for a patient too is that just having a cancer can be overwhelming and can make it difficult for them to even remember all the questions and concerns that they have.

Dr. Choudhury:            

Yeah, that’s absolutely critical, and the caregivers play a very important role. So, often, people who are not partnered, for example, will just bring a friend to these appointments just to be that second set of eyes and ears.

Katherine:                  

Dr. Choudhury, we received this question from an audience member prior to the program: What is palliative care?

Dr. Choudhury:           

So, palliative care is really a branch of medicine that helps with symptom management. And so, that symptom management doesn’t necessarily have to be end-of-life sort of symptoms relating to death and dying. It can be just along the way to help with managing the symptoms related to cancer and its treatment, but also to be kind of another medical provider to help with communication of goals of care – what’s really bothersome, what’s really important – so that we kind of incorporate those wishes and desires into the management decisions that we make.

So, a patient does not have to be at end-of-life to engage with palliative care. Certainly, even earlier engagement with palliative care can be helpful to maximize quality of life along the treatment journey. But as symptoms become more bothersome, certainly, our palliative care colleagues can be incredibly helpful – not just in helping manage pain, but also nausea, also depression and psychological side effects. So, they’re a really critical part of our treatment team.

Katherine:                  

Yeah. I think we have a pretty good understanding and the goals of treatment. So, let’s walk through the types of therapy that are used today to treat prostate cancer.

If you would start with surgery?

Dr. Choudhury:            

Sure. So, surgery is a radical prostatectomy, and they take out the prostate – they take out neighboring structures called seminal vesicles, they take out the surrounding fat, and they’ll usually take out some neighboring lymph nodes as well. And there are advantages of surgery in that when the prostate is out, the pathologist can examine the whole prostate front to back, side to side, as well as those neighboring structures to really understand the stage of the cancer – “Where is it?” – and also, the grade – “Is it a high-grade cancer, a low-grade cancer, somewhere in the middle?”

And it really helps guide “What is the risk of developing recurrence afterwards, and are there further treatments that we should be giving after the surgery? For example, radiation to the prostate bed to decrease the risk of recurrences. Surgery does have its own set of potential side effects and complications, so it’s not appropriate for everyone, but in general, that’s the process.

Katherine:                  

What other treatment options? You mentioned radiation. What else is there?         

Dr. Choudhury:          

Yeah, so, radiation comes in two forms: there’s seed radiation, which is implantable little radioactive pellets that are implanted throughout the prostate. And then, there’s external radiation, and that can be given in several forms and over several schedules that it’s really important to discuss with the care team.

The other forms of treatment that people on this call might’ve heard about or read about are in a category called “focal treatments,” and these are basically ways to – and the term we use is a blade but zap – an area of the prostate using lasers, or high-intensity ultrasound, or with freezing an area of the prostate, or with something called “irreversible electroporation.”

These are basically all ways to, again, zap an area of the prostate either with heat or with cold with the intention of killing off cancer cells in an area. And the trouble is that none of these treatments have actually been demonstrated to improve outcomes related to prostate cancer compared to just surveillance alone. And it does complicate, sort of, the monitoring afterwards to see if something has come back.

But there might be very selected patients where there’s an area of cancer that’s seen on a scan – like an MRI – with no cancer seen outside of that area who might decide to pursue this possibility of focal treatment with the goal of maybe putting off the need for something like radiation or surgery. But that’s something that really should be discussed with a multidisciplinary team so that people really understand what they’re getting into in terms of risks and potential benefits.

So, those treatments are not really considered standard at this time.

Katherine:                  

What about hormonal therapy?        

Dr. Choudhury:   

Yeah, so, hormonal therapy plays a role in the treatment of prostate cancer, really depending on the stage and the other treatments that are being considered. So, for example, if a patient is going to surgery for a localized prostate cancer, in general, we wouldn’t use hormonal treatment either before or after the surgery unless they’re planned for radiation after the surgery.

However, for patients who have intermediate risk or higher localized prostate cancer and are getting radiation, then we will often recommend hormonal treatments, which are basically testosterone-lowering drugs, to make the radiation work as well as possible. And then, for patients who have advanced cancer beyond where surgery or radiation is going to be of help, then, hormonal treatments are important to treat the cancer wherever it is.

And that’s because prostate cancer cells, wherever they are in the body – wherever they’re in the prostate itself, or in lymph nodes, or bones, or other organs – depend on the testosterone in your body to supply a fuel – to support its growth and survival.

And so, lowering the level of testosterone in the body basically deprives the cancer cells of that fuel and starts a process of killing cancer cells even without any need for radiation, or chemotherapy, or things like that. However, hormonal treatments are not curative. They don’t kill all the cancer – they kill some and put the rest to sleep. And so, if you stop the hormonal treatment, the cancer will grow back, and that’s why it’s not a treatment on its own for localized prostate cancer.

And that’s also why, for prostate cancer that’s spread, we often add on additional medications to the testosterone-lowering drugs to be more effective at really killing the cancer wherever it is compared to the testosterone suppression alone.

Katherine:                  

Oh, I see. For advanced disease, what treatments are available for patients that are hormone-sensitive or -resistant?

Dr. Choudhury:           

Yeah, so “hormone-sensitive” means that the cancer has advanced, but the patient hasn’t started on testosterone-lowering drugs yet. And so, as I had mentioned, testosterone lowering is really the backbone of treatment of these patients. And so, there are additional treatments that have been demonstrated previously to be effective after testosterone-lowering by itself stops working, and these include a chemotherapy drug called docetaxel. And in addition, there are more potent hormonal drugs called abiraterone, enzalutamide, apalutamide, and darolutamide.

And the role of these other drugs is to block hormonal signaling within the cancer cells from hormones other than testosterone. And so, by doing the more potent hormonal drug in conjunction with the testosterone lowering, that leads to a much deeper response – much more tumor shrinkage – and, it turns out, also prolonged survival in patients treated with those combination treatments – compared top people who are treated with testosterone lowering alone and then receive these drugs later.

So, there’s something about treating more aggressively at the beginning in this hormone-sensitive state that plays out in prolongation of survival. And not only prolonged survival, but improved quality of life due to delaying the symptoms of cancer grown and progression.

Katherine:                  

Right.        

Dr. Choudhury:   

When we then talk about castration resistant disease, certainly we use the same classes of drugs, but then, there’s a wider armamentarium of things that we use that include, again, other kinds of chemotherapy.

There are radiation drugs, and an approved drug Radium-223. And there’s another drug on the horizon called Lutetium PSMA. There are immune therapy drugs – something called Sipuleucel-T – and then, this is also a situation where we do genetic testing of the cancer to understand if there’re certain –what we call “therapeutic vulnerabilities.”

Other treatment options that are available based on the genetics of the cancer that might be helpful in some people? And specific options include a chemo-immune therapy called “Keytruda” in a small subset of patients with particular genetic changes involving genes involved in mismatched repair of DNA. And then, there’s another set of targeted treatments called “PARP inhibitors” for certain sets of patients who have alterations in genes involved in homologous recombination repair of DNA.

So, that’s all very complicated, and so that’s why it’s important to get treated with high-volume providers of prostate cancer patients so that they’re really aware and onboard with these various treatment options that are available.

Katherine:                  

Yeah. Where do clinical trials fit in?

Dr. Choudhury:       

So, clinical trials can fit in anywhere along the treatment trajectory for prostate cancer. It’s not something that’s reserved for kind of late-stage disease. So, for example, for people with localized disease, there are different types of treatment strategies that might be available to maybe enhance the activity of the surgery or the radiation that’s planned. And so, we might consider a clinical trial even for localized prostate cancer.

And then, anywhere along the way, there are standard treatments that are available, and then, there are some experimental approaches that might be available. And the experimental approaches might be to add an additional drug to the standard or to actually – what we call “deescalate treatment” – give a little bit less of the medication and see if the outcomes are the same. And these are tests.

And so, the control arm, when there’s a randomized trial, is generally considered a standard of care. And then, the experimental arm is some alteration or deviation from that standard. But many of our trials are also single-arm trials where we’re testing some experimental regimen that all patients who participate in the trial will take part in, and it’s really important for the patient to ask, “What are the clinical trials available?” “What are the alternatives as far as standard treatments?” and “Are there other clinical trials other than the one that’s being discussed,” that might be appropriate for them?

Katherine:                  

Are there emerging approaches that patients should know about?   

Dr. Choudhury:        

Yeah. So, a lot of the emerging approaches are related to the genetics of the prostate cancer, as I just mentioned. And then, these different forms of radiation drugs – in addition to the ones that have already demonstrated survival advantage, there are other ones in the pipeline. And then, one thing that patients are very curious about is immune therapy approaches to prostate cancer.

Now, the standard kind of immune therapy drugs that are approved for lung cancer, and melanoma, and kidney cancers don’t tend to work particular well for prostate cancer. But there are many clinical trials trying to combine those kinds of drugs with other drugs or have newer approaches to immune therapies that patients with advanced cancer can certainly ask about.

Again, all of this is really experimental, and people need to understand that these sorts of approaches aren’t going to help everyone. But participating in a clinical trial allows our patients to contribute to knowledge that can be useful for other patients down the line.

Katherine:                  

Right. Now that we’ve delved into the types of treatment, let’s talk about what goes into deciding on an approach. What do you typically consider when determining the best treatment approach or option for a patient?

Dr. Choudhury:   

So, the starting point and the ending point is the patient themselves. And so, “the patient” means “What is their age? What is their fitness level? What are their activities? What’s the overall life expectancy? What are there other medical issues?” And then, we consider the cancer – “What is the stage? What is the grade? Where has it spread to, if it’s spread?”

And then, we try to incorporate all of those pieces with data – with clinical trials that have already been reported – and we have a lot of data in prostate cancer from patients who’ve participated in clinical trials, often randomized to one approach versus another, that gives us a sense of “What are the approaches that really benefit patients in terms of increasing likelihood of cure or prolonging the survival?”

And so, once we incorporate all of those things, we can come up with some treatment suggestions, and then patient preference on those suggestions obviously plays a very important role. But sometimes, we start down a line, and the patient is having troublesome side effects or it’s not working as well as we’d really hoped, and it’s important to be adaptive and to change things if things are not going down a route that we’d really hoped. So, that’s an ongoing conversation. It’s not that you make a treatment plan at the first visit and that’s the plan that’s stuck with throughout the whole course of things.

It’s a conversation at every visit on how things are going in terms of how the patients are doing and how the cancer is responding. And then, again, try to manage side effects as well as we can and adjust things if we need to along the way – and maybe switch to something that’s potentially going to be better tolerated or more effective, depending on what we see.

Katherine:                  

Right. It sounds like there are many factors to weigh when making this decision. I’d like to address a list of common concerns about treatment that we’ve heard from the community. So, I’d love to get your take on these. “There’s nothing that can be done about advanced prostate cancer.” Is that true?

Dr. Choudhury:           

So, that is very much untrue in that even patients with pretty advanced prostate cancer – even what we call “high-volume” kinds of prostate cancer – can live for years, and years, and years with appropriate treatments.

And the concern, oftentimes, is that the way that we get those years, and years, and years are with treatments that lower levels of testosterone, and I’m guessing that some of your questions coming up are related to concerns around side effects of treatment. But many of our patients tolerate those side effects pretty well and can live quite a good, and vigorous, and fulfilling life even with pretty advanced prostate cancer.

Katherine:                  

The next one: “Clinical trials are a last-resort treatment option.”

Dr. Choudhury:   

Yeah, so, as I’d mentioned before, clinical trials can be appropriate anywhere along the treatment trajectory of prostate cancer, and they are often being compared against standards which are often pretty good, but can we make them better? And certainly, participating in clinical trials isn’t for everyone, but for a long of our patients who are interested in seeing if an experimental approach might be beneficial to them or contributing some knowledge to patients down the line really do find trial participation to be quite fulfilling.

Katherine:                  

All right. The next one is: “Prostate cancer isn’t genetic, so I don’t need to be tested.” Is that the case?

Dr. Choudhury:        

No. So, it turns out that prostate cancer is actually one of our most heritable cancers. Somewhere between 40% and 50% of the predisposition to prostate cancer is actually genetic, or inherited based on family. So, the part that’s tricky and the part that is hard to maybe explain to patients is that a lot of that heritability is not encompassed in particular cancer genes in the way that many people are familiar with with breast and ovarian cancers, which are often linked to genes called “BRCA-1” and “BRCA-2.” So, a small subset of patients with prostate cancer do have alterations in that BRCA-2 gene, or BRCA-1, or ATM, or some other genes involved in breast and ovarian cancers.

And that does impact, potentially, their treatments down the line, and certainly is impactful for themselves, their siblings, their children as far as, potentially, screening recommendations for other cancers. But oftentimes, we’ll do one of these tests in patients who have a pretty extensive family history of prostate cancer, and they come out negative, and the patient is very confused because they clearly have a family history, but it’s because not all the risk of prostate cancer is actually encompassed in these gene tests that we run.

Katherine:                  

Ah, okay. The next concern is “I’ll lose all sexual function when I receive treatment.”

Dr. Choudhury:         

So, it very much depends exactly what the treatment is, and what’s being offered, and what the recovery is like.

So, for example, for patients who go into a prostatectomy and have very good erectile function, it’s not inevitable that you’ll lose your sexual functioning after a prostatectomy. There is a process – we kind of refer to it as “penile rehab” – of using medications like a Viagra or Sialis to restore the blood flow. You could use certain things like vacuum pump devices to restore the blood flow, and again, it’s not inevitable that people are going to lose their sexual functioning after a prostatectomy.

Even with testosterone suppression, while it plays a role in libido and erectile function, it’s not inevitable that people lose their libido and erectile function completely, even on these drugs. But certainly, more often than not, people will lose their erectile function on testosterone-lowering medications.

And so, there are alternative ways to get erections – involving, again, use of vacuum pump devices or injections that people can give themselves into the penis. People can have penile implant surgery to be able to get erections that way. And so, it’s really dependent on what the situation is.

Again, none of those more mechanical interventions are really ideal, but particularly when people have a defined course of treatment – for example, a surgery or radiation with a brief course of hormones – people can recover erectile function even after those sorts of interventions. And if they can’t, then we do have other approaches that will allow people to still be able to be sexually intimate with their partner after all of the treatments are completed.

Katherine:                  

Dr. Choudhury, one more concern: “My symptoms and side effects can’t be managed.”

Dr. Choudhury:           

Yeah. So, again, it’s very rare that we run into situations where there are side effects or symptoms that can’t be managed at all, in the sense that we have very effective medications against hot flashes, or moodiness, or pain, or –just fatigue. And certainly, lifestyle plays a big role in this. Also, a lot of the symptoms that people express are related to underlying depression and anxiety issues, and certainly, engaging with a mental health provider can be helpful in terms of managing those as well.

And then, there’s a lot of nonpharmacologic treatments – meaning nonmedication approaches that can provide people a lot of benefit in terms of their quality of life, and we have an integrative center called the Zakim Center for Integrative Medicine that helps with the relaxation techniques, and massage, and yoga, and acupuncture…

And people find different approaches to help manage these symptoms and side effects. And so, it’s very unusual where we run into a situation where the side effects are unbearable and unmanageable. Usually, we can manage them in some form of way that allow people to have, again, a good quality of life and a meaningful life, even on prostate cancer treatment.

Katherine:                  

Thank you, that’s really helpful. I’d like to talk about the term “shared decision making.” What does that mean to you, exactly?       

Dr. Choudhury:   

So, shared decision-making really means that when the physician conveys information to a patient, that the patient really understands what’s being said, and what, really, the alternatives are – and the real risks and the benefits of the different alternatives. And so, if a patient goes to see a surgeon and they say, “Well, we should take this out,” and there’s never really discussion of what the risks and benefits of the alternatives are –and the alternatives could be just watching, or radiation, or even more intensive treatment, then that’s not really shared decision making.

But what I think is not exactly shared decision making is when the patient is getting information from really non-knowledgeable or non-reputable sources and then starts to come up with conclusions based on hearsay or people trying to sell them a product that really hasn’t been FDA approved or really tested. And so, those are situations where when the information is really not good, then we can run into troubles with communications. But there are a lot of really excellent sources for patient information that’s available, and the Prostate Cancer Foundation is a really good source, and a lot of the academic prostate cancer centers are really great sources of information.

And so, being educated and asking good questions is really the best way for a patient to feel comfortable that they’re not missing anything and that they’re, again, having all the information that they need to make a good choice for themselves.

Katherine:                   

Do you have any advice to help patients speak up if they’re feeling like they’re not being heard?

Dr. Choudhury:           

Sure. So, I mean, there’s never any barrier to bringing up concerns with whoever that you’re seeing, and if you feel like whoever you’re talking to isn’t being receptive to those concerns, then certainly, second opinions are very useful. But if you see multiple doctors and they’re kind of telling you the same thing based on good evidence, then you probably have to take in what they’re saying, and process it, and see if it really does apply to your particular situation.

But any cancer doctor who really has your self-interest in mind will be very open to discussing the concerns that you have, so you should absolutely bring them up.

Katherine:                  

To close, Dr. Choudhury: What would you like to leave the audience with? Are you hopeful?

Dr. Choudhury:          

Yes. I’m actually incredibly hopeful. There’s been such a transformation in our diagnosis and management of prostate cancer compared to when I first started as an independent attending back in 2012. In the last ten years, there’s been so many new treatments that’ve been approved in the last decade and a lot of newer technologies available for staging patients – really finding where their prostate cancer is.

And newer technologies for treating the cancer wherever it is and in a really smart way. And so, we can really individualize our treatments for the patient that’s in front of us being a bit more intensive for people with higher-volume or higher-risk cancers, and actually potentially being able to back off treatment, and actually stopping some of the testosterone-lowering drugs in patients who are responding exceptionally well to the medications and the local treatments that we’re giving them.

And then, also, I’m really hopeful about the newer treatments and newer technologies that are on the horizon. We have newer – what we call “molecularly targeted agents.” We have new approaches involving immune therapies that are being tested – newer radiation approaches. And I feel like all of this put together allows us to, again, satisfy the goal of maintaining patients’ good, healthy, meaningful quality of life moving forward.

Katherine:                  

Yeah. Dr. Choudhury, thank you so much for taking the time to join us today.

Dr. Choudhury:           

Oh, you’re welcome. It’s so wonderful to have this opportunity.

Katherine:                  

And thank you to all of our partners. Please continue to send in your questions to Question@PowerfulPatients.org, and we’ll work to get them answered on future programs. To learn more about prostate cancer and to access tools to help you become a proactive patient, visit PowerfulPatients.org. I’m Katherine Banwell. Thanks for being with us today.

Which Emerging DLBCL Therapies Are Showing Promise?

Which Emerging DLBCL Therapies Are Showing Promise? from Patient Empowerment Network on Vimeo.

What’s next in diffuse large B-cell lymphoma (DLBCL) treatment? Dr. Justin Kline reviews developing research that could transform the future of DLBCL treatment.

Dr. Justin Kline is the Director of the Lymphoma Program at the University of Chicago Medicine. Learn more about Dr. Kline, here.

See More From The Pro-Active DLBCL Patient Toolkit

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Which Factors Impact DLBCL Treatment Decisions?

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How Can Patients Access the Latest DLBCL Treatment Options?


Transcript:

Katherine:      

What about emerging therapies, Dr. Kline? What approaches are showing promise?

Dr. Kline:       

Well, I think probably in DLBCL, the biggest breakthrough, I don’t even know that I can call it emerging at this point, because it’s on the market, so to speak.

But I think it’s important to talk about, again, is CAR T-cell therapy, and this is a type of immune therapy where a person’s own immune cells called T-cells are taken from his or her bloodstream. And then using a special type of a virus, those T-cells are manipulated or engineered, that sounds better, to express on their surface something called a chimeric antigen receptor, which is somewhere between an antibody and a normal T-cell receptor. But anyhow, this chimeric antigen receptor confers or allows the T-cell to recognize a protein that’s expressed on the surface of B-cells, cancerous or otherwise, called CD19. And when that chimeric antigen or CAR antigen, excuse me, that CAR receptor expressing T-cell sees a lymphoma cell, it engages it and kills it, a pretty clever idea which has been in the works for decades now.

But CAR T-cell therapy has now been approved for not only DLBCL but many other types of non-Hodgkin lymphoma. And I think in the past decade, far and away, that’s the biggest breakthrough. There are other types of immunotherapy, probably most notably a type called bispecific immunotherapy, which is a pretty clever type of immune therapy where these specially engineered antibodies that are capable of binding or sticking to not only a person’s T-cell, a T-cell that’s already in his or her body, and a B-cell, a lymphoma cell that’s right next to that T-cell, sort of holds them together, and the part that binds the T-cell actually activates it, triggers it to kill the B-cell. And so there are a number of companies that have those bispecific therapies that are in development. I suspect a couple will be approved by the FDA, I would guess, in 2022.

These bispecific immunotherapies have been very effective, again, in DLBCL that’s come back, relapsed or refractory, as well as in other lymphomas. They do have some side effects that are similar to what we see in folks with CAR T-cell therapy. I won’t belabor what those are, but they are also very effective. There’ve been a number of drugs that, either immunotherapies or other types of therapies, that target that same CD19 protein on diffuse large B-cell lymphoma cells that have recently been approved by the FDA, either alone or in combination. Targeted therapies are always exciting. Although as compared with other lymphomas, these targeted therapies, many of which are oral, which are pills, have not been particularly effective in relapsed DLBCL.

So, I think that among the most exciting therapies are those that take advantage of our own immune systems to recognize and kill the lymphoma cells.

How Is Relapsed/Refractory DLBCL Treated?

How Is Relapsed/Refractory DLBCL Treated? from Patient Empowerment Network on Vimeo.

What options are available if a diffuse large B-cell lymphoma (DLBCL) patient doesn’t respond to treatment or relapses? Dr. Justin Kline discusses potential next steps in treatment for DLBCL patients with relapsed or refractory disease. 

Dr. Justin Kline is the Director of the Lymphoma Program at the University of Chicago Medicine. Learn more about Dr. Kline, here.

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Which Emerging DLBCL Therapies Are Showing Promise?


Transcript:

Katherine:      

Let’s talk about if someone doesn’t respond to initial treatment or they relapse. Let’s start by defining some terms for the audience. What does it mean to be refractory?

Dr. Kline:       

So, refractory is a term that’s used to describe a situation where a person has received treatment but that treatment hasn’t worked as well as we have expected. And the most – probably the most important scenario is after initial treatment.

Most people, for example, who receive R-CHOP, somewhere between 80 and 85 percent will have a completely negative PET scan after treatment. That’s remission. If the PET scan is not negative and you do a biopsy and it shows that there’s still lymphoma there, that’s what’s called primary refractory. In other words, the person’s lymphoma was refractory to initial or primary treatment. And in clinical trials that are testing agents, drugs or immunotherapies in folks who’ve had multiple treatments, usually refractory is used to define someone who has either not responded or has had a very, very short response to whatever the last treatment they had was.

Katherine:                  

How does relapse then differ from refractory?

Dr. Kline:       

So, right, so relapse suggests that the lymphoma at some point was in a remission, right?

And so for example, a person gets six treatments of R-CHOP, has a PET scan at the end, the PET scan is clean. We say you’re in remission. Eight months later, the person develops a newly enlarged lymph node, and a biopsy shows that the lymphoma has come back, right? That’s what we would call a relapse. There was a period of remission, whereas refractory usually means there was never a period of remission to begin with.

Katherine:                  

Got it. How typical is it for a patient to relapse?

Dr. Kline:       

Well, again, if you look at all comers, if you treated 100 people with DLBCL, most, probably 70 to 75 percent, would go into remission. About 10 or 15 percent would have primary refractory disease and another 10 or 15 percent would have a remission that would end at some point and they would have a relapse. So, it’s not terribly common.

The problem is that once the lymphoma has either demonstrated that it’s refractory to treatment or it’s come back, it’s relapsed, it’s a little bit more difficult to cure the lymphoma at that point.

Katherine:      

How are patients treated then if they’ve relapsed or refractory?

Dr. Kline:       

Well, so for somebody who’s had primary refractory lymphoma or has a lymphoma that’s relapsed after initial therapy, again, say for the sake of argument with R-CHOP, for many, many years, the next line of treatment if you will was to administer what we call salvage chemotherapy, and this is different chemotherapy from the original R-CHOP, that’s meant to put the lymphoma back into remission. In other worse, to salvage a remission. And for folks whose lymphomas were sensitive or responded, shrunk down to that salvage chemotherapy, we would consolidate that remission.

We would make it deeper using high dose chemotherapy and an autologous or a cell, stem cell transplant. And that’s been the standard of care for younger patients for decades.

That paradigm has been challenged, particularly in refractory patients or those who have very early relapses after R-CHOP, by two important clinical trials that have demonstrated superiority of a type of immunotherapy, a cellular immunotherapy called CAR T-cell therapy, which seems to be more effective even than stem cell transplantation in that population of folks.

How Is DLBCL Treatment Effectiveness Monitored?

How Is DLBCL Treatment Effectiveness Monitored? from Patient Empowerment Network on Vimeo.

How will patients know if their diffuse large B-cell lymphoma (DLBCL) treatment is working? Dr. Justin Kline defines DLBCL treatment goals and explains how they are monitored throughout the treatment process.

Dr. Justin Kline is the Director of the Lymphoma Program at the University of Chicago Medicine. Learn more about Dr. Kline, here.

See More From The Pro-Active DLBCL Patient Toolkit

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Which Emerging DLBCL Therapies Are Showing Promise?

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How Is Relapsed/Refractory DLBCL Treated?


Transcript:

Katherine:      

Let’s turn to what happens after treatment. How is the effectiveness of the treatment monitored?

Dr. Kline:       

Well, so depends on the doc to some degree, but I like to do some, what I call interim imaging. So, we’ll typically, again, depending on the stage, but very often we’re delivering six treatments of R-CHOP, usually given every three weeks. So, the total treatment course is about four and a half months. It can be a little bit shorter for patients who have Stage 1 or Stage 2 DLBCLs. I like to get interim imaging, which is either a PET scan or a CAT scan, done sort of in the middle of treatment, just to give us a sense of how things are going. Are the lymphomatous tumors shrinking down? Some patients are, even by the middle of treatment, are in a complete remission. Their PET scan has gone totally normal. And then at the end of treatment, that’s probably the most important imaging, and there I do like to do PET scans again. Again, they’re the most sensitive test we have to detect lymphoma.

And so at the end of treatment, usually about four to six weeks after somebody completes treatment, we like to get that end of treatment PET scan, and that’s the PET scan that allows us to say, you’ve had a complete response. You’re in a complete remission, or not.

Katherine:                  

So, what does remission mean exactly then?

Dr. Kline:       

So, in DLBCL, remission is pretty simply defined as absence of disease on, or absence of cancer on the tests that we do to detect it. Again, typically PET scans, and if somebody had involvement of his or her bone marrow at the beginning before treatment, we’ll repeat that bone marrow at the end of treatment just to make sure that there’s no lymphoma left over. And so, but for most people it’s a PET scan. If the PET scan does not show any abnormalities, then that’s what we call a complete remission or remission.

Katherine:      

Is a cure possible for patients with DLBCL?

Dr. Kline:       

Cure is not only possible, it’s actually quite common. If you look at all comers, regardless of stage, age, what have you, approximately 60 to 65 percent of folks who are treated for DLBCL are cured. The cure rates are higher with folks with earlier stage lymphomas, but even folks who have advanced DLBCL are frequently cured.

Which Factors Impact DLBCL Treatment Decisions?

Which Factors Impact DLBCL Treatment Decisions? from Patient Empowerment Network on Vimeo.

When making a decision about diffuse large B-cell lymphoma (DLBCL) treatment, what should you consider? Dr. Justin Kline reviews key patient factors that impact therapy decisions, including comorbidities and treatment side effects.

Dr. Justin Kline is the Director of the Lymphoma Program at the University of Chicago Medicine. Learn more about Dr. Kline, here.

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Which Emerging DLBCL Therapies Are Showing Promise?

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How Is Relapsed/Refractory DLBCL Treated?


Transcript:

Katherine:      

Other than a newly diagnosed patient’s stage of DLBCL and their age, what other factors would impact a treatment decision?

Dr. Kline:       

Yeah. So, that’s a good question, so you named I think the biggest two, the most important two. Although I have to say that even people in their – oftentimes in their 80s are prescribed full dose therapy. The goal of our treatment, especially in newly diagnosed patients, is to cure the lymphoma, and so we tend to be aggressive. But outside of age, other things we consider are other health problems. Does the person have a healthy heart, healthy kidneys? How many other medical problems does the person have? How fit is the person? How sick is the person or symptomatic is the person from his or her lymphoma? And sometimes we take into consideration all those factors and we say, well, it’s still worth it to try to deliver the most intensive therapy that we can.

Other times we say, you know what? I think the risk of doing such is probably not worth the potential benefit, and so sometimes we’ll recommend dose reductions, reduce the doses of some of the medicines and the R-CHOP cocktail if that’s what we’re going to do, and occasionally, if the person has too many other things going on, we may talk about more palliative treatments, in other words, gentler treatments that may extend a person’s survival while hopefully maintaining a really good quality of life.

Katherine:                 

Yeah. What kind of side effects should patients expect?

Dr. Kline:       

Well, that’s a conversation I’ve had many, many, many times over the years. And specifically to the R-CHOP cocktail, just because that’s the one that’s used most commonly, I tell people that the most common things are symptoms like fatigue, occasionally nausea, sometimes vomiting, although the medications we have to prevent those things are very good these days.

Constipation is not uncommon, hair loss, mouth sores. I think probably the most important thing is to recognize that the chemotherapy will suppress or reduce the immune system, and so we’re always worried about people catching infections when they’re on chemotherapy, because sometimes they can be serious. And then I talk about rare symptoms that are a big deal. Sometimes the chemotherapy can damage organs like the heart. It’s uncommon, but it happens sometimes. And chemotherapy, while we need to give it to cure the lymphoma, can sometimes cause secondary blood cancers like leukemias years down the road. The risk is low, but again, these are I think serious things that people, even if they’re rare, people need to know about them before they start.

How Is DLBCL Treated?

How Is Diffuse Large B-Cell Lymphoma (DLBCL) Treated? from Patient Empowerment Network on Vimeo.

Dr. Justin Kline explains what patients need to know about current DLBCL treatment, including R-CHOP, stem cell therapy, and clinical trials.

Dr. Justin Kline is the Director of the Lymphoma Program at the University of Chicago Medicine. Learn more about Dr. Kline, here.

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Transcript:

Katherine:      

From what I understand, treatment really should start right away. So, what types of treatment are currently available to someone newly diagnosed with DLBCL?

Dr. Kline:       

Sure, so for about 20 plus years now, the standard of care for most patients with DLBCL, regardless of whether it’s a germinal center or an activated B-cell type DLBCL, is a combination of what we call chemo immunotherapy, the acronym for which is R-CHOP, and each of those letters stands for a different medication. The R stands for rituximab, which is an antibody that coats the surface of lymphomatous B cells and sort of signals the immune system to come and kill those cells.

The C is cyclophosphamide, the H is hydroxy doxorubicin, and the O is Oncovin. These are each classical chemotherapy drugs, and they each work through a different mechanism to help kill lymphoma sells. And the P is a steroid pill called prednisone, so it’s a little bit complicated, but the reason that we use cocktails of medicines to treat lymphomas is that it really works to prevent the lymphoma cells from gaining the upper hand, from developing resistance to a single type of treatment.

Katherine:      

Right.

Dr. Kline:       

Now, I should say that for certain DLBCLs, particularly those double hit lymphomas that we talked about, sometimes we use a more intensive cocktail called dose-adjusted R-EPOCH. It has largely the same medications with an additional chemotherapy called etoposide.

The difference is that R-CHOP is given – all the drugs are given intravenously, with the exception of prednisone, over a single day. The dose-adjusted R-EPOCH is given over an infusion over the course of about five days. The other point I might make is that there was a recent large clinical study that compared R-CHOP to a new regimen called polatuzumab R-CHP. So, basically the O in R-CHOP was removed and substituted for this new drug called polatuzumab vedotin, and although many, many combinations similar to R-CHOP have been compared to R-CHOP over the past 20 years and failed, this regimen, polatuzumab R-CHP in the study called the POLARIX study actually was shown to improve what we call progression-free survival by about six percent. So, it may become a new standard of care for treating DLBCL, which is exciting, because we haven’t had one in over 20 years.

Katherine:                  

Right. That’s good news.

Dr. Kline:       

Long answer to a short question, sorry about that. Yes, it is good news.

Katherine:      

That is good news. What about stem cell transplants?

Dr. Kline:       

Good question. So, for newly diagnosed patients, in this era, we rarely if ever are recommending stem cell transplant or stem cell transplantation as part of initial therapy. There are rare circumstances, but for the vast majority of patients who are, people who are diagnosed with DLBCL, it’s not recommended.

Katherine:      

Where do clinical trials fit in?

Dr. Kline:       

It’s a really good question. I practice at an academic medical center, and so one of our missions is to advance therapy and make it better. There’s no way to do that without performing clinical trials, so I think for – clinical trials aren’t for everyone. As a matter of fact, most people with lymphoma are not treated in the context of clinical trials.

But certainly I think they are important to consider, and number one, it’s possible that the particular person might be involved with the clinical trial that is very successful and actually improves their outcome. I always tell people that I see that being involved with the clinical trial is also, to some extent, an altruistic endeavor. You’re helping your doctors learn more about how to treat a type of cancer, hopefully better, maybe not, you know? So, there is some altruism that goes into clinical trials as well. So, I do think that most people who are able should consider having a second opinion. Doesn’t have to be at an academic medical center, but at least with another doctor, where clinical trial options can be discussed.

An Expert Defines Diffuse Large B-Cell Lymphoma (DLBCL)

An Expert Defines Diffuse Large B-Cell Lymphoma (DLBCL) from Patient Empowerment Network on Vimeo.

What is diffuse large B-cell lymphoma? Dr. Justin Kline defines DLBCL from symptoms to staging and explains how the condition progresses through the body.

Dr. Justin Kline is the Director of the Lymphoma Program at the University of Chicago Medicine. Learn more about Dr. Kline, here.

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Transcript:

Katherine:      

Let’s start by understanding what DLBCL is and how it progresses. How would you define DLBCL?

Dr. Kline:       

Well, diffuse large B-cell lymphoma is a malignancy of a normal counterpart cell called a B-cell, which is part of our immune system. Its job is to make antibodies, to help protect us from various types of infections. Diffuse large B-cell lymphoma, or DLBCL, initiates when normal B-cells acquire changes in their genetic machinery, like any cancer. And DLBCL is the most common form of non-Hodgkin lymphoma. We classify it as aggressive, as an aggressive lymphoma, which means if left untreated it tends to grow pretty quickly.

Katherine:      

How is it typically diagnosed?

Dr. Kline:       

Well, it varies. But like any cancer, a diagnosis requires some sort of a biopsy, either a surgical removal of a lymph node or a needle biopsy of a lymph node or another structure where the tumor seems to be growing.

Katherine:      

How does somebody know if they have DLBCL?

Dr. Kline:       

Well, there are certain symptoms that are more common amongst folks with DLBCL. And they’re not specific to DLBCL, they can be seen in other lymphomas, but they include symptoms like fatigue that’s unrelenting, unintentional weight loss, sometimes fevers, typically at similar times throughout the day, drenching night sweats, swollen lymph nodes, and then certainly pain in any area of the body that comes and doesn’t go. Those are some of the general symptoms.

Katherine:      

And how does the condition progress?

Dr. Kline:       

Well, as I mentioned, DLBCL tends to be an aggressive lymphoma, so sometimes folks will notice enlarged lymph glands that continue to grow and grow and grow. Sometimes they’re painful, sometimes not so much. DLBCL, it can really grow anywhere, so we think of it as a lymphoma and so involving lymph nodes, but DLBCL can grow in any organ, even outside of lymph nodes. And so it sometimes progresses locally, but it also can spread and start to grow in other areas of the body.

Katherine:      

And how is it staged, Dr. Kline?

Dr. Kline:       

Well, there’s a special staging system for all lymphomas that is somewhat similar to what folks might think of with solid tumors like a breast cancer, a lung cancer. But in other ways, it’s different.

The staging tools for DLBCL are really most importantly PET scans and CT scans, really PET scans and in some cases bone marrow exams or bone marrow biopsies. The PET scan is a very sensitive scan that uses radioactive glucose to identify very sensitively where in the body lymphoma might be growing, because lymphoma cells really preferentially prefer to use glucose as their primary energy source. So, they preferentially take up the radioactive glucose that’s given through the vein before the PET scan is taken.

As I mentioned, in some cases, a bone marrow test is also done, although less and less frequently. Which is good, because that’s a more invasive and uncomfortable test. And so folks who have early stage DLBCL that typically involves one lymph node group, like for example, a lymph node in the neck or several lymph node groups on the same side of the breathing muscle, of course you can’t see my breathing muscle here, called the diaphragm.

Those are stage I and stage II DLBCLs. stage III DLBCLs are those that involve lymph nodes on either side of the breathing muscle, so in other words, lymph nodes involved in the neck and then maybe in the groin area, where stage IV DLBCLs are those that involve sites outside of lymph nodes like the liver or the lungs or the bones.

Katherine:                  

What are the subtypes of DLBCL?

Dr. Kline:       

Well, that’s a good and somewhat complicated question. So there, probably most importantly, there’ve been two subsets, if you will, of DLBCL identified, and they really have to do with where along the normal maturation course a B-cell becomes lymphoma or where the DLBCL develops in that normal maturation course. Some DLBCLs arise from what we call germinal center B-cells, which are B-cells that are sort of just seeing their natural antigen or what they’re supposed to recognize.

And then there are DLBCLs that arise in more differentiated or more mature B-cells, and those are called activated B-cell type DLBCLs. So, there’s germinal center and activated, the B-cell type DLBCLs. And I don’t know that that’s super important for your listeners to know, but it is important because these two subtypes of DLBCL are driven by largely separate mutations or alterations in the DNA, and they also respond differently to initial treatment. There are other rare subtypes that involve specific mutations and genes like MYC and BCL2, and these are the so-called double-hit lymphomas. They’re officially classified as high-grade lymphomas, but they’re very similar to DLBCLs. There are other rare subtypes of DLBCL, for example, a type that comes on typically in young men and women called primary mediastinal B-cell lymphoma.

But I think for the sake of simplicity, the most common two subtypes are the germinal center derived and then the activated B-cell type of DLBCL.

Katherine:      

All right. That’s good to know, thank you. It helps us understand the disease a little bit better.

Dr. Kline:       

Good.

DLBCL Treatment Approaches: What You Need to Know

DLBCL Treatment Approaches: What You Need to Know from Patient Empowerment Network on Vimeo.

What do you need to know about diffuse large b-cell lymphoma (DLBCL) treatment options? DLBCL expert Dr. Justin Kline discusses current therapies for newly diagnosed and relapsed/refractory patients, reviews promising research, and shares tools for staying up to date on the latest treatment approaches.

Dr. Justin Kline is the Director of the Lymphoma Program at the University of Chicago Medicine. Learn more about Dr. Kline, here.

See More From The Pro-Active DLBCL Patient Toolkit

Download Guide

Related Resources:

How to Play an Active Role in Your DLBCL Treatment and Care Decisions

An Overview of Current DLBCL Treatment Approaches

DLBCL Treatment Approaches What You Need to Know Resource Guide


Transcript:

Katherine:      

Hello, and welcome. I’m Katherine Banwell, your host for today’s webinar. Today we’re going to discuss diffuse large B-cell lymphoma or DLBCL and explore current and emerging treatment approaches. Before we meet our guest, let’s review a few important details. The reminder email you received about this webinar contains a link to program materials. If you haven’t already, click that link to access information to follow along during the webinar. At the end of this program, you’ll receive a link to a program survey. Please take a moment to provide feedback about your experience today in order to help us plan future webinars.

Finally, before we get into the discussion, please remember that this program is not a substitute for seeking medical advice. Please refer to your healthcare team about what might be best for you. Joining us today is Dr. Justin Kline. Welcome, Dr. Kline. Would you please introduce yourself?

Dr. Kline:       

Hi, thank you. Yes, my name is Justin Kline. I am an associate professor of medicine at the University of Chicago, medicine.

I’m the director of the lymphoma program, which basically means I specialize in taking care of folks who’ve been diagnosed with various types of lymphomas.

Katherine:      

Thank you so much for taking time out of your schedule to join us.

Dr. Kline:       

Pleasure.

Katherine:      

Let’s start by understanding what DLBCL is and how it progresses. How would you define DLBCL?

Dr. Kline:       

Well, diffuse large B-cell lymphoma is a malignancy of a normal counterpart cell called a B-cell, which is part of our immune system. Its job is to make antibodies, to help protect us from various types of infections. Diffuse large B-cell lymphoma, or DLBCL, initiates when normal B-cells acquire changes in their genetic machinery, like any cancer. And DLBCL is the most common form of non-Hodgkin lymphoma. We classify it as aggressive, as an aggressive lymphoma, which means if left untreated it tends to grow pretty quickly.

Katherine:      

How is it typically diagnosed?

Dr. Kline:       

Well, it varies. But like any cancer, a diagnosis requires some sort of a biopsy, either a surgical removal of a lymph node or a needle biopsy of a lymph node or another structure where the tumor seems to be growing.

Katherine:      

How does somebody know if they have DLBCL?

Dr. Kline:       

Well, there are certain symptoms that are more common amongst folks with DLBCL. And they’re not specific to DLBCL, they can be seen in other lymphomas, but they include symptoms like fatigue that’s unrelenting, unintentional weight loss, sometimes fevers, typically at similar times throughout the day, drenching night sweats, swollen lymph nodes, and then certainly pain in any area of the body that comes and doesn’t go. Those are some of the general symptoms.

Katherine:      

And how does the condition progress?

Dr. Kline:       

Well, as I mentioned, DLBCL tends to be an aggressive lymphoma, so sometimes folks will notice enlarged lymph glands that continue to grow and grow and grow. Sometimes they’re painful, sometimes not so much. DLBCL, it can really grow anywhere, so we think of it as a lymphoma and so involving lymph nodes, but DLBCL can grow in any organ, even outside of lymph nodes. And so it sometimes progresses locally, but it also can spread and start to grow in other areas of the body.

Katherine:      

And how is it staged, Dr. Kline?

Dr. Kline:       

Well, there’s a special staging system for all lymphomas that is somewhat similar to what folks might think of with solid tumors like a breast cancer, a lung cancer. But in other ways, it’s different.

The staging tools for DLBCL are really most importantly PET scans and CT scans, really PET scans and in some cases bone marrow exams or bone marrow biopsies. The PET scan is a very sensitive scan that uses radioactive glucose to identify very sensitively where in the body lymphoma might be growing, because lymphoma cells really preferentially prefer to use glucose as their primary energy source. So, they preferentially take up the radioactive glucose that’s given through the vein before the PET scan is taken.

As I mentioned, in some cases, a bone marrow test is also done, although less and less frequently. Which is good, because that’s a more invasive and uncomfortable test. And so folks who have early stage DLBCL that typically involves one lymph node group, like for example, a lymph node in the neck or several lymph node groups on the same side of the breathing muscle, of course you can’t see my breathing muscle here, called the diaphragm.

Those are stage I and stage II DLBCLs. stage III DLBCLs are those that involve lymph nodes on either side of the breathing muscle, so in other words, lymph nodes involved in the neck and then maybe in the groin area, where stage IV DLBCLs are those that involve sites outside of lymph nodes like the liver or the lungs or the bones.

Katherine:                  

What are the subtypes of DLBCL?

Dr. Kline:       

Well, that’s a good and somewhat complicated question. So there, probably most importantly, there’ve been two subsets, if you will, of DLBCL identified, and they really have to do with where along the normal maturation course a B-cell becomes lymphoma or where the DLBCL develops in that normal maturation course. Some DLBCLs arise from what we call germinal center B-cells, which are B-cells that are sort of just seeing their natural antigen or what they’re supposed to recognize.

And then there are DLBCLs that arise in more differentiated or more mature B-cells, and those are called activated B-cell type DLBCLs. So, there’s germinal center and activated, the B-cell type DLBCLs. And I don’t know that that’s super important for your listeners to know, but it is important because these two subtypes of DLBCL are driven by largely separate mutations or alterations in the DNA, and they also respond differently to initial treatment. There are other rare subtypes that involve specific mutations and genes like MYC and BCL2, and these are the so-called double-hit lymphomas. They’re officially classified as high-grade lymphomas, but they’re very similar to DLBCLs. There are other rare subtypes of DLBCL, for example, a type that comes on typically in young men and women called primary mediastinal B-cell lymphoma.

But I think for the sake of simplicity, the most common two subtypes are the germinal center derived and then the activated B-cell type of DLBCL.

Katherine:      

All right. That’s good to know, thank you. It helps us understand the disease a little bit better.

Dr. Kline:       

Good.

Katherine:      

Let’s move onto treatment. From what I understand, treatment really should start right away. So, what types of treatment are currently available to someone newly diagnosed with DLBCL?

Dr. Kline:       

Sure, so for about 20 plus years now, the standard of care for most patients with DLBCL, regardless of whether it’s a germinal center or an activated B-cell type DLBCL, is a combination of what we call chemo immunotherapy, the acronym for which is R-CHOP, and each of those letters stands for a different medication. The R stands for rituximab, which is an antibody that coats the surface of lymphomatous B cells and sort of signals the immune system to come and kill those cells.

The C is cyclophosphamide, the H is hydroxy doxorubicin, and the O is Oncovin. These are each classical chemotherapy drugs, and they each work through a different mechanism to help kill lymphoma sells. And the P is a steroid pill called prednisone, so it’s a little bit complicated, but the reason that we use cocktails of medicines to treat lymphomas is that it really works to prevent the lymphoma cells from gaining the upper hand, from developing resistance to a single type of treatment.

Katherine:      

Right.

Dr. Kline:       

Now, I should say that for certain DLBCLs, particularly those double hit lymphomas that we talked about, sometimes we use a more intensive cocktail called dose-adjusted R-EPOCH. It has largely the same medications with an additional chemotherapy called etoposide.

The difference is that R-CHOP is given – all the drugs are given intravenously, with the exception of prednisone, over a single day. The dose-adjusted R-EPOCH is given over an infusion over the course of about five days. The other point I might make is that there was a recent large clinical study that compared R-CHOP to a new regimen called polatuzumab R-CHP. So, basically the O in R-CHOP was removed and substituted for this new drug called polatuzumab vedotin, and although many, many combinations similar to R-CHOP have been compared to R-CHOP over the past 20 years and failed, this regimen, polatuzumab R-CHP in the study called the POLARIX study actually was shown to improve what we call progression-free survival by about six percent. So, it may become a new standard of care for treating DLBCL, which is exciting, because we haven’t had one in over 20 years.

Katherine:                  

Right. That’s good news.

Dr. Kline:       

Long answer to a short question, sorry about that. Yes, it is good news.

Katherine:      

That is good news. What about stem cell transplants?

Dr. Kline:       

Good question. So, for newly diagnosed patients, in this era, we rarely if ever are recommending stem cell transplant or stem cell transplantation as part of initial therapy. There are rare circumstances, but for the vast majority of patients who are, people who are diagnosed with DLBCL, it’s not recommended.

Katherine:      

Where do clinical trials fit in?

Dr. Kline:       

It’s a really good question. I practice at an academic medical center, and so one of our missions is to advance therapy and make it better. There’s no way to do that without performing clinical trials, so I think for – clinical trials aren’t for everyone. As a matter of fact, most people with lymphoma are not treated in the context of clinical trials.

But certainly I think they are important to consider, and number one, it’s possible that the particular person might be involved with the clinical trial that is very successful and actually improves their outcome. I always tell people that I see that being involved with the clinical trial is also, to some extent, an altruistic endeavor. You’re helping your doctors learn more about how to treat a type of cancer, hopefully better, maybe not, you know? So, there is some altruism that goes into clinical trials as well. So, I do think that most people who are able should consider having a second opinion. Doesn’t have to be at an academic medical center, but at least with another doctor, where clinical trial options can be discussed.

Katherine:      

Other than a newly diagnosed patient’s stage of DLBCL and their age, what other factors would impact a treatment decision?

Dr. Kline:       

Yeah. So, that’s a good question, so you named I think the biggest two, the most important two. Although I have to say that even people in their – oftentimes in their 80s are prescribed full dose therapy. The goal of our treatment, especially in newly diagnosed patients, is to cure the lymphoma, and so we tend to be aggressive. But outside of age, other things we consider are other health problems. Does the person have a healthy heart, healthy kidneys? How many other medical problems does the person have? How fit is the person? How sick is the person or symptomatic is the person from him or her lymphoma? And sometimes we take into consideration all those factors and we say, well, it’s still worth it to try to deliver the most intensive therapy that we can.

Other times we say, you know what? I think the risk of doing such is probably not worth the potential benefit, and so sometimes we’ll recommend dose reductions, reduce the doses of some of the medicines and the R-CHOP cocktail if that’s what we’re going to do, and occasionally, if the person has too many other things going on, we may talk about more palliative treatments, in other words, gentler treatments that may extend a person’s survival while hopefully maintaining a really good quality of life.

Katherine:                 

Yeah. What kind of side effects should patients expect?

Dr. Kline:       

Well, that’s a conversation I’ve had many, many, many times over the years. And specifically to the R-CHOP cocktail, just because that’s the one that’s used most commonly, I tell people that the most common things are symptoms like fatigue, occasionally nausea, sometimes vomiting, although the medications we have to prevent those things are very good these days.

Constipation is not uncommon, hair loss, mouth sores. I think probably the most important thing is to recognize that the chemotherapy will suppress or reduce the immune system, and so we’re always worried about people catching infections when they’re on chemotherapy, because sometimes they can be serious. And then I talk about rare symptoms that are a big deal. Sometimes the chemotherapy can damage organs like the heart. It’s uncommon, but it happens sometimes. And chemotherapy, while we need to give it to cure the lymphoma, can sometimes cause secondary blood cancers like leukemias years down the road. The risk is low, but again, these are I think serious things that people, even if they’re rare, people need to know about them before they start.

Katherine:      

Yeah. Let’s turn to what happens after treatment. How is the effectiveness of the treatment monitored?

Dr. Kline:       

Well, so depends on the doc to some degree, but I like to do some, what I call interim imaging. So, we’ll typically, again, depending on the stage, but very often we’re delivering six treatments of R-CHOP, usually given every three weeks. So, the total treatment course is about four and a half months. It can be a little bit shorter for patients who have Stage 1 or Stage 2 DLBCLs. I like to get interim imaging, which is either a PET scan or a CAT scan, done sort of in the middle of treatment, just to give us a sense of how things are going. Are the lymphomatous tumors shrinking down? Some patients are, even by the middle of treatment, are in a complete remission. Their PET scan has gone totally normal. And then at the end of treatment, that’s probably the most important imaging, and there I do like to do PET scans again. Again, they’re the most sensitive test we have to detect lymphoma.

And so at the end of treatment, usually about four to six weeks after somebody completes treatment, we like to get that end of treatment PET scan, and that’s the PET scan that allows us to say, you’ve had a complete response. You’re in a complete remission, or not.

Katherine:                  

So, what does remission mean exactly then?

Dr. Kline:       

So, in DLBCL, remission is pretty simply defined as absence of disease on, or absence of cancer on the tests that we do to detect it. Again, typically PET scans, and if somebody had involvement of his or her bone marrow at the beginning before treatment, we’ll repeat that bone marrow at the end of treatment just to make sure that there’s no lymphoma left over. And so, but for most people it’s a PET scan. If the PET scan does not show any abnormalities, then that’s what we call a complete remission or remission.

Katherine:      

Is a cure possible for patients with DLBCL?

Dr. Kline:       

Cure is not only possible, it’s actually quite common. If you look at all comers, regardless of stage, age, what have you, approximately 60 to 65 percent of folks who are treated for DLBCL are cured. The cure rates are higher with folks with earlier stage lymphomas, but even folks who have advanced DLBCL are frequently cured.

Katherine:      

That’s great news. Let’s talk about if someone doesn’t respond to initial treatment or they relapse. Let’s start by defining some terms for the audience. What does it mean to be refractory?

Dr. Kline:       

So, refractory is a term that’s used to describe a situation where a person has received treatment but that treatment hasn’t worked as well as we have expected. And the most – probably the most important scenario is after initial treatment.

Most people, for example, who receive R-CHOP, somewhere between 80 and 85 percent will have a completely negative PET scan after treatment. That’s remission. If the PET scan is not negative and you do a biopsy and it shows that there’s still lymphoma there, that’s what’s called primary refractory. In other words, the person’s lymphoma was refractory to initial or primary treatment. And in clinical trials that are testing agents, drugs or immunotherapies in folks who’ve had multiple treatments, usually refractory is used to define someone who has either not responded or has had a very, very short response to whatever the last treatment they had was.

Katherine:                  

How does relapse then differ from refractory?

Dr. Kline:       

So, right, so relapse suggests that the lymphoma at some point was in a remission, right?

And so for example, a person gets six treatments of R-CHOP, has a PET scan at the end, the PET scan is clean. We say you’re in remission. Eight months later, the person develops a newly enlarged lymph node, and a biopsy shows that the lymphoma has come back, right? That’s what we would call a relapse. There was a period of remission, whereas refractory usually means there was never a period of remission to begin with.

Katherine:                  

Got it. How typical is it for a patient to relapse?

Dr. Kline:       

Well, again, if you look at all comers, if you treated 100 people with DLBCL, most, probably 70 to 75 percent, would go into remission. About 10 or 15 percent would have primary refractory disease and another 10 or 15 percent would have a remission that would end at some point and they would have a relapse. So, it’s not terribly common.

The problem is that once the lymphoma has either demonstrated that it’s refractory to treatment or it’s come back, it’s relapsed, it’s a little bit more difficult to cure the lymphoma at that point.

Katherine:      

How are patients treated then if they’ve relapsed or refractory?

Dr. Kline:       

Well, so for somebody who’s had primary refractory lymphoma or has a lymphoma that’s relapsed after initial therapy, again, say for the sake of argument with R-CHOP, for many, many years, the next line of treatment if you will was to administer what we call salvage chemotherapy, and this is different chemotherapy from the original R-CHOP, that’s meant to put the lymphoma back into remission. In other worse, to salvage a remission. And for folks whose lymphomas were sensitive or responded, shrunk down to that salvage chemotherapy, we would consolidate that remission.

We would make it deeper using high dose chemotherapy and an autologous or a cell, stem cell transplant. And that’s been the standard of care for younger patients for decades.

That paradigm has been challenged, particularly in refractory patients or those who have very early relapses after R-CHOP, by two important clinical trials that have demonstrated superiority of a type of immunotherapy, a cellular immunotherapy called CAR T-cell therapy, which seems to be more effective even than stem cell transplantation in that population of folks.

Katherine:      

What about emerging therapies, Dr. Kline? What approaches are showing promise?

Dr. Kline:       

Well, I think probably in DLBCL, the biggest breakthrough, I don’t even know that I can call it emerging at this point, because it’s on the market, so to speak.

But I think it’s important to talk about, again, is CAR T-cell therapy, and this is a type of immune therapy where a person’s own immune cells called T-cells are taken from his or her bloodstream. And then using a special type of a virus, those T-cells are manipulated or engineered, that sounds better, to express on their surface something called a chimeric antigen receptor, which is somewhere between an antibody and a normal T-cell receptor. But anyhow, this chimeric antigen receptor confers or allows the T-cell to recognize a protein that’s expressed on the surface of B-cells, cancerous or otherwise, called CD19. And when that chimeric antigen or CAR antigen, excuse me, that CAR receptor expressing T-cell sees a lymphoma cell, it engages it and kills it, a pretty clever idea which has been in the works for decades now.

But CAR T-cell therapy has now been approved for not only DLBCL but many other types of non-Hodgkin lymphoma. And I think in the past decade, far and away, that’s the biggest breakthrough. There are other types of immunotherapy, probably most notably a type called bispecific immunotherapy, which is a pretty clever type of immune therapy where these specially engineered antibodies that are capable of binding or sticking to not only a person’s T-cell, a T-cell that’s already in his or her body, and a B-cell, a lymphoma cell that’s right next to that T-cell, sort of holds them together, and the part that binds the T-cell actually activates it, triggers it to kill the B-cell. And so there are a number of companies that have those bispecific therapies that are in development. I suspect a couple will be approved by the FDA, I would guess, in 2022.

These bispecific immunotherapies have been very effective, again, in DLBCL that’s come back, relapsed or refractory, as well as in other lymphomas. They do have some side effects that are similar to what we see in folks with CAR T-cell therapy. I won’t belabor what those are, but they are also very effective. There’ve been a number of drugs that, either immunotherapies or other types of therapies, that target that same CD19 protein on diffuse large B-cell lymphoma cells that have recently been approved by the FDA, either alone or in combination. Targeted therapies are always exciting. Although as compared with other lymphomas, these targeted therapies, many of which are oral, which are pills, have not been particularly effective in relapsed DLBCL.

So, I think that among the most exciting therapies are those that take advantage of our own immune systems to recognize and kill the lymphoma cells.

Katherine:      

With all of these treatments in development, how can patients ensure that they’re receiving the latest treatment options?

Dr. Kline:       

Yeah. It’s complicated, even for somebody who’s in the business. There are so many clinical trials going on all over the place and at various stages. I think, as I mentioned early on in our conversation, one of the best ways to make sure that you or your loved one is receiving the most advanced care is to get that second opinion, particularly at a center that does clinical trials. And it doesn’t have to be an academic center. There are many offices in the community that also run clinical trials, but I think meeting with somebody who treats DLBCL for a living at least once to talk about those options is a good idea.

The second approach is really to get engaged. And it may not be the person with lymphoma, sometimes it’s a spouse or a child, usually a grown child, but doing due diligence, getting involved with websites, Lymphoma Research Foundation, Leukemia-Lymphoma Society, where you know you’re getting good information. Folks like you guys who are involved in patient education. I think I have seen many patients who come in extraordinarily well educated about DLBCL, even before their first visit, and I do think it does make a difference in helping them decide what and where they want to get their treatment.

Katherine:      

Yeah. What resources would you recommend for patients to help them stay up to date or to learn more about their disease?

Dr. Kline:       

Sure, yeah. Again, I think as folks sort of meet with their oncologist or oncology nurse, each office or center may have their own specific recommendations. I really like, as I mentioned, the Lymphoma Research Foundation, which I think is LRF.org*, the Leukemia & Lymphoma Society, LLS.org. They not only have a website that has a lot of information on it, but they often have patient education days once or twice a year where specific lymphomas are discussed in their treatment, that’s geared toward people with lymphoma and their caregivers.

They also have, it talks about dealing with chemotherapy, the financial toxicity associated with cancer treatments, how to sort of share your diagnosis with your children and other family members, so it’s not just doctors that are barking at you all day long, but it’s other people, social workers, lawyers, nutritionists, nurses. So, those are probably my two favorite organizations, but there are many others where people can get very good and useful information about DLBCL and other lymphomas as well.

Katherine:      

To close, what are you wanting to leave the audience with? Are you hopeful?

Dr. Kline:       

Well, I think DLBCL has really been a success story, right? I mean, if you look through the literature 50 years ago, there were very few people, if any, who were cured after being diagnosed with DLBCL. And as I mentioned earlier, again in our conversation, and today we’re curing about two-thirds of people who are diagnosed with DLBCL. That being said, that leaves about a third of people who need additional treatment, and that additional treatment often has a lot of side effects associated with it. So that is a particular group of people for whom I think we need new, more effective and hopefully less toxic treatments. So, again, if you’re somebody out there who’s been diagnosed with DLBCL, get a second opinion, consider being involved in a clinical trial. It may not only help you, but it also helps your doctors and other people who do DLBCL treatment for a living.

Katherine:                  

Dr. Kline, thank you so much for taking the time to join us today.

Dr. Kline:                   

It’s been my pleasure, thanks for having me.

Katherine:      

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

To learn more about DLBCL and to access tools to help you become a proactive patient, visit Powerfulpatients.org. I’m Katherine Banwell, thanks for being with us.


*Editor’s Note: The Lymphoma Research Foundation’s website is lymphoma.org

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