Understanding High-Risk DLBCL

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Understanding High-Risk DLBCL from Patient Empowerment Network on Vimeo.

What is high-risk diffuse large B-cell lymphoma (DLBCL) exactly? Dr. Jane Winter explains progression of the disease, DLBCL subgroups, and treatment approaches that may bring high-risk DLBCL under control.

Dr. Jane Winter is a hematologist and medical oncologist at Robert H. Lurie Comprehensive Cancer Center at Northwestern University. More information on Dr. Winter here.

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Transcript:

Laura Beth:

Dr. Winter, what is high-risk DLBCL?   

Dr. Winter:

There are certain aggressive lymphomas that are more high-grade. And in recent years, we’ve identified a subset that has genetic changes in certain genes that lead to a very aggressive type of lymphoma that grows rapidly and is more difficult to cure with standard therapy. And what’s most important about identifying that subset is that it requires that at least most of our evidence is that the standard strategy that I just spoke about briefly in terms of what we use for transformed follicular lymphoma, the standard therapy we use for diffuse large B-cell lymphoma called R-CHOP where the “R” is standing for rituximab. 

Again, that antibody that targets a particular marker on the lymphoma cells, CD20 immunotherapy plus chemotherapy, CHOP chemotherapy which has been around for probably 50 years, this very standard backbone of treatment for diffuse large B-cell lymphoma is not sufficient. We don’t have head-to-head randomized phase three trials showing definitely that the more aggressive strategy is so much better, but most of the evidence is that standard R-CHOP just doesn’t do as well in curing these highly aggressive, and what we call high grade or double hit lymphomas.  

These are lymphomas that have these genetic changes, rearrangements in particular genes MYC and BCL2, and I like to think of it as MYC takes the brakes off of growth. So, it’s sort of the rapidly growing disease, and the BCL2 prevents the cells from dying. So, between that, you have a rapidly growing lymphoma that doesn’t stop. And so, that’s a special subgroup of diffuse large B-cell lymphoma. There are some other subcategories.  

Primary mediastinal, which tends to be a type of aggressive lymphoma that presents generally as a big mediastinal mass in the middle of the chest, usually younger patients, more often women than men, but still many, many men as well. So, high-risk generally for me means that it has a double hit. There’s MYC, M-Y-C, and BCL2 genetic changes. There are some other types, but that’s basically what I think of in terms of high-risk. When we think of garden-variety diffuse large B-cell lymphomas, there are some ways of categorizing patients into four different subcategories in terms of “risk.”   

The first of these was what we call the international prognostic index that was developed in the 70s based on patients who were enrolled on clinical trials. In those days, the diagnoses were probably not exactly what they are today in terms of how we categorize patients, but that is a set of clinical features that there’s a little app online and you can calculate whether a patient is high-risk, intermediate, low, low-intermediate risk. In this system remains fairly helpful, predictive. But, we have refined it significantly in modern times. 

And I have to say, not to toot my own horn, but one of my fellows, Dr. Zhao and I, a number of years ago using a database from the National Comprehensive Cancer Network, and patients who all treated with modern therapy and were diagnosed with modern techniques, we used that data to develop a new, improved international prognostic index. And this helps us better discriminate the four different categories, and it places greater weight on patient age, which is an important predictor, as well as the particular blood test result, the LDH, which is an enzyme that’s helpful in aggressive lymphomas and diffuse large B-cell lymphoma.  

And, this particular, what we call the NCCN-IPI, you can just put your age and LDH level and so on into this app and you just find it online, NCCN–IPI, and it will put patients into four different subgroups. And this predict outcomes and survival over a five-year period for these patients. It’s not hard and fast, like anything else, within every category. So, if you look at every patient in the low-risk group by the NCCN–IPI, there still are a few patients who will fail therapy, but the majority of patients will do very well.  

And, if you happen to be someone who is 80 years old with a high LDH and you fall into the high-risk patient group, the outcomes are not going to be as good, but that doesn’t mean every patient in that category fails treatment. So, there’s still gonna be some good outcomes. So, it’s helpful. These are guides, and they do help to identify patients who are, what we call, high-risk or high intermediate risk. So, this is another way of looking at predicting outcome apart from looking at whether a patient is what we call a “double hit” lymphoma. So, the double hit, I just want to make one point is that when a pathologist makes a diagnosis of diffuse large B-cell lymphoma, it is absolutely critical that that biopsy, the pathology be sent for a procedure called FISH.  

That stands for fluorescent in situ hybridization, and it’s a technique the pathologist can use, or special labs will use, to pull out, to identify those patients who have this very high-risk subset of lymphoma called the double hit with both a MYC and a BCL2 rearrangement. Whether a MYC and a BCL6 rearrangement falls into this same risk group, we’re deemphasizing that and really, it’s the double MYC and BLC2 group that’s the highest risk.  

What Do Patients Need to Know About DLBCL and COVID Vaccines?

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What Do Patients Need to Know About DLBCL and COVID Vaccines? from Patient Empowerment Network on Vimeo.

DLBCL treatment can lower a patient’s immunity. Dr. Kami Maddocks explains current options to help patients protect themselves from COVID and other viruses.

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.

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Transcript:

Katherine:

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.  

A DLBCL Expert Debunks Common Patient Misconceptions

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A DLBCL Expert Debunks Common Patient Misconceptions from Patient Empowerment Network on Vimeo.

Dr. Kami Maddocks responds to common diffuse large B-cell lymphoma (DLBCL) patient questions and misconceptions. Dr. Maddocks encourages patients to feel empowered in their care so they can partner with their healthcare 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.

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Transcript:

Katherine:

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. Number one, 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:

Yeah. 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.  

What You Should Know About DLBCL Treatment Side Effects

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What You Should Know About DLBCL Treatment Side Effects from Patient Empowerment Network on Vimeo.

Once a patient begins diffuse large B-cell lymphoma (DLBCL) treatment, what side effects could they experience? Dr. Kami Maddocks, reviews potential side effects and how they may be managed.

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.

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Transcript:

Katherine:

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. 

What Are Common Symptoms of DLBCL?

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What Are Common Symptoms of DLBCL? from Patient Empowerment Network on Vimeo.

What symptoms could diffuse large B-cell lymphoma (DLBCL)patients experience? Dr. Kami Maddocks defines DLBCL and explains the diagnosis, symptoms, sub-types and progression of the disease.

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.

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Transcript:

Katherine:

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.  

What Are Common Side Effects of DLBCL Treatment?

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What Are Common Side Effects of DLBCL Treatment? from Patient Empowerment Network on Vimeo.

Lymphoma expert Dr. Matthew Matasar reviews common side effects of diffuse large B-cell lymphoma (DLBCL) treatment.

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

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Transcript:

Katherine Banwell:

What are common side effects of DLBCL treatment approaches? 

Dr. Matasar:

Like anything, the side effects are dependent upon the treatments that we use. So, treatments that use chemotherapy-based approaches will often have the side effects that we associate with chemotherapy. And obviously not all chemotherapies are created equally. But treatments like R-CHOP or R-CHP-pola, or Polarix regimen, these are treatments that use traditional cytotoxic chemotherapy agents and anthracycline based chemotherapy that have well-characterized side effects that are unfortunately unavoidable but often temporary things like hair loss.  

And hair loss is unavoidable with these treatments although temporary.   

The Oncovin or polatuzumab treatments can lead to a problem called neuropathy, which can manifest as numbness or tingling in the fingers or toes or constipation because our intestines have nerves too that are affected by these treatments. Certainly fatigue and lowering of the immune system are common with these and other chemotherapy medicines as well. And your doctors will always talk to you about ways to reduce the risk of infection such as vaccination and such as anti-infective medicines or immune boosting medicines to try to limit the risk of infection while receiving such treatments.  

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

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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.

Who Are the Members of Your DLBCL Care Team?

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Who Are the Members of Your DLBCL Care Team? from Patient Empowerment Network on Vimeo.

Lymphoma expert Dr. Jason Westin describes the key members of a multidisciplinary DLBCL care team.

Dr. Jason Westin is the Director of Lymphoma Clinical Research in the Department of Lymphoma/Myeloma in the Division of Cancer Medicine at The University of Texas MD Anderson Cancer Center. Learn more about Dr. Westin, here.

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Transcript:

Katherine:

Today, we’re going to be learning about DLBCL treatment goals and how patients can be active members of their team. So, let’s start by understanding who is typically on a patient’s DLBCL healthcare team.

Dr. Westin:                 

It’s a good question. The members of the DLBCL healthcare team usually consist of a physician – and this person usually would start the process of saying, “This is something. I don’t know what’s going on with this mass or this pain you’re having. Let’s get some imaging. Let’s get a biopsy to figure out what’s going on.” There would often be a nurse as a member of the team. And the nurse usually provides a critical service in terms of help – facilitating patients to understanding what’s going on and to work with the healthcare team directly to provide excellent patient care.

And eventually, there would often be a pharmacist involved in terms of the chemotherapy or treatments that are administered to help review those and work with the physician and the nurse directly. Those would be the main members of the healthcare team. Occasionally, there might be a social worker or there might be other care providers that are involved. But usually, it’s the physician, the nurse. And then, sometimes the physician extender, such as a PA or a nurse practitioner.

Katherine:                  

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

Dr. Westin:                 

Patients are a critical part of our team and are often the decider of what goes on. The physicians, nurses, PAs, pharmacists – our jobs are to help educate the patient and to help the patient to decide what the best treatment is.

Ultimately, it’s the patient’s responsibility to understand what’s going on, to ask good questions, and then to make a decision about what treatments are best for them.

Katherine:                  

What role do caregivers take?

Dr. Westin:                 

Caregivers often play a very important role, and it’s variable from person to person how involved a caregiver is. But if patients have symptoms or side effects of treatment, caregivers are often critical to make sure patients get the appropriate medical care that they need. Some treatments may have more potential for side effects than others. Sometimes, caregivers are essential to actually stay with a patient, even during admission to the hospital to make sure the patients are monitored closely.

And we may talk about different treatments later in the interview. But at our center, sometimes we even mandate that there are caregivers involved in the sense of staying with the patient in the hospital for certain therapy types. But in general, being a supportive family member or caregiver, it’s a good thing to have even if we don’t have a lot of toxicity for emotional and physical support. But sometimes it’s really important to help manage toxicities.

What Do You Need to Know About Diffuse Large B-Cell Lymphoma (DLBCL)?

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What Do You Need to Know about Diffuse Large B-Cell Lymphoma (DLBCL)? from Patient Empowerment Network on Vimeo.

 After a diffuse large B-cell Lymphoma (DLBCL) diagnosis, what’s important for patients and their loved ones to know? This animated video provides an understanding of DLBCL, available treatment options and lists key steps for becoming an empowered patient.

See More From The Pro-Active DLBCL Patient Toolkit

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Factors that Guide a DLBCL Treatment Decision

 
 What Is Diffuse Large B-cell Lymphoma (DLBCL)?

 Essential Testing Following a DLBCL Diagnosis

Essential Testing Following a DLBCL Diagnosis 

Transcript:

Hi, my name is Dr. Williams, and I am a hematologist-oncologist specializing in diffuse large B-cell lymphoma—commonly known as DLBCL.

Today, I’m going to talk about what you need to know if you or a loved one has been diagnosed with DLBCL.

First, it’s important to understand your disease.

DLBCL is the most common form of non-Hodgkin lymphoma, which is a type of cancer that begins in the lymphatic system. The lymphatic system is part of the body’s immune system and includes tissue and organs that create, carry, and store white blood cells. DLBCL is caused when white blood cells called lymphocytes rapidly grow out of control.

It may be localized to the lymph nodes or may occur OUTSIDE of the lymphatic system in areas such as the thyroid, skin, breast, bone, testes, gastrointestinal tract—or even other organs in the body.

In many cases, an early sign of the disease is swollen lymph nodes. Patients may also experience symptoms that can include fever, unintended weight loss, night sweats, and fatigue. These are known as “B” symptoms. Depending on where the lymphoma is in the body, it could cause other symptoms as well.

Next, it’s important to understand how DLBCL is typically treated.

Because it is fast-growing, treatment usually begins quickly to help control the disease and its symptoms. The standard of treatment is a regimen called R-CHOP, which combines chemotherapy and a monoclonal antibody. This approach can lead to disease remission in many patients.

If a patient doesn’t respond to initial chemotherapy treatment or relapses, then several other types of treatment are considered, such as:

  • Alternative chemotherapy
  • Stem cell transplant
  • Targeted treatment
  • CAR T-cell therapy
  • And clinical trials

When making treatment decisions, factors such as where the disease is in your body, and lab test results can impact available options. And potential side effects, a patient’s age, health, and lifestyle are also taken into consideration.

In addition to understanding your disease and treatment options, it’s vital to be an active partner in your care. So, how can you take steps to be an empowered patient?

  • Educate yourself about DLBCL.
  • Consider a second opinion or consult with a DLBCL specialist immediately following a diagnosis.
  • Write down your questions before and during your appointments. Visit powerfulpatients.org/dlbcl to access office visit planners to help you organize your notes.
  • Understand the goals of treatment and ask whether a clinical trial might be right for you.
  • Bring a friend or loved one 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 decisions. Don’t hesitate to ask questions and to share your concerns. You are your own best advocate.

What Are the Stages of DLBCL?

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What Are the Stages of DLBCL? from Patient Empowerment Network on Vimeo.

Diffuse large B-cell lymphoma (DLBCL) care involves the use of a specific staging system. Expert Dr. Loretta Nastoupil shares insight about the DLBCL staging system and explains what is occurring in the body during each stage.

Dr. Loretta Nastoupil is Director of the Lymphoma Outcomes Database in the Department of Lymphoma/Myeloma at The University of Texas MD Anderson Cancer Center. Learn more about Dr. Nastoupil, here.

See More From The Pro-Active DLBCL Patient Toolkit

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 What Is Diffuse Large B-cell Lymphoma (DLBCL)?

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How Is Diffuse Large B-Cell Lymphoma (DLBCL) Treated?

Transcript:

Katherine:

What are the stages of DLBCL?

Dr. Nastoupil:

So, we currently use what’s called the Ann Arbor staging system. And, again, this is very different from the staging applied in solid tumors.

And so, the way we define stage is based off where the tumor is in relationship to the diaphragm. So, if you have the disease just in lymph nodes and it’s all confined to one side of the diaphragm, it’s either going to be stage I or II. And how we distinguish between I or II is just really not are they in close proximity and something that we would fit in one radiation field.

If you have disease that’s above and below the diaphragm, that’s generally at least stage III. stage IV is generally when it’s now outside of the lymph node. So, what we call extranodal location. So, those are generally organs, lung, liver, skin, bone, etcetera.

It can be very complicated in that you could have just one extranodal site. So, say you just have stomach involvement, or you just have one area of the bone. That could be a 1E.

So, it’s important to recognize every patient has a stage. What that means is whether or not we would give a full course of therapy in terms of systemic treatment that goes through the vein or maybe a shortened course in radiation is dependent on that stage. 

Essential Testing Following a DLBCL Diagnosis

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Essential Testing Following a DLBCL Diagnosis from Patient Empowerment Network on Vimeo.

Following a diffuse large B-cell lymphoma (DLBCL) diagnosis, essential testing should follow. Expert Dr. Loretta Nastoupil explains DLBCL tests that help determine prognosis and guide treatment options for each patient.

Dr. Loretta Nastoupil is Director of the Lymphoma Outcomes Database in the Department of Lymphoma/Myeloma at The University of Texas MD Anderson Cancer Center. Learn more about Dr. Nastoupil, here.

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Expert Advice for Newly Diagnosed DLBCL Patients

Transcript:

Katherine:

Let’s look into testing for a moment. What tests are essential when making a diagnosis?

Dr. Nastoupil:

So, at the beginning, we clearly have to have tissue. I always say, “Tissue is the issue.” So, we may have features that are suggestive of lymphoma. And even sometimes radiologists will describe a CT scan or an X-ray and say, “This looks very suspicious for lymphoma.” But unless we actually have a biopsy that confirms lymphoma, we won’t go as far as to render a diagnosis in the absence of a biopsy.

Now our biopsy approaches have evolved over the last few years. The gold standard or what I would consider to be the best approach currently is to actually have an incisional biopsy meaning we find a lymph node that looks suspicious.

And we either remove the entire lymph node or a large section of that lymph node to render a diagnosis because there are various things we need to do to that lymph node.

So, generally, we do what’s called immunohistochemistry staining. So, we stain either surface markers of those cells or markers within the cell because cancer is defined as having an abnormal clone or a population of cells that all have the same features. And they’re able to survive even if the host is not thriving.

So, that’s, essentially, what we’re trying to define. Are there cells in this lymph node that are all the same? And what features do they share in common? And then we will also do something called flow cytometry where we’ll take these cells and essentially sort them according to those surface markers. And that will also tell us – is this a B-cell clone, a T-cell clone, and what features would distinguish one lymphoma from another?

And the last thing that we need tissue for are what we call molecular studies, where we may learn about either genes that are rearranged or mutated within those cells that, again, may help us further classify the lymphoma and, again, group them into higher or potentially lower risk groups.

Katherine:

What do the results of these tests tell us about prognosis and treatment choices?

Dr. Nastoupil:

So, again, everything kind of hinges on what type of lymphoma we’re facing. So, for instance, diffuse large B-cell lymphoma is what we call an aggressive lymphoma. So, what does that mean? It can grow very quickly. It can take over the patient in terms of resources. So, generally, patients will have weight loss and sometimes even constitutional symptoms or B symptoms, such as night sweats and fevers, fatigue.

In the absence of treatment, it is universally fatal. Now, that timeline can vary from one person to another. But, generally, within a year, if we don’t treat large cell lymphoma, generally, that’s not survivable.

But as I’ve also mentioned for at least 60 percent of patients and potentially even more, we can cure it with standard treatment. There are other types of lymphoma, such as indolent B-cell lymphomas where actually the goal is not cure, but patients may actually have a normal life expectancy meaning they will face multiple treatment courses over their lifetime. But at the end of the day, they should live just as long as someone their same age and sex who doesn’t have lymphoma.

So, again, that’s going to be a vastly different treatment course and outcome. So, sometimes, when you’re sitting in the waiting room and you’re sharing your journey with others, you have to keep in mind that you may all be using the same term, Non Hodgkin lymphoma. But our expectations in terms of treatments and outcomes might be vastly different. 

Understanding Diffuse Large B-cell Lymphoma (DLBCL) and Its Subtypes

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Understanding Diffuse Large B-cell Lymphoma (DLBCL) and Its Subtypes from Patient Empowerment Network on Vimeo.

What should patients know about diffuse large B-cell lymphoma (DLBCL) and its subtypes? Expert Dr. Loretta Nastoupil defines DLBCL, discusses the subtypes of DLBCL and reviews the potential impact on treatment options.

Dr. Loretta Nastoupil is Director of the Lymphoma Outcomes Database in the Department of Lymphoma/Myeloma at The University of Texas MD Anderson Cancer Center. Learn more about Dr. Nastoupil, here.

See More From The Pro-Active DLBCL Patient Toolkit

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What Are the Subtypes of DLBCL?

 How Does Your DLBCL Subtype Impact Your Treatment Options?

 Expert Advice for Newly Diagnosed DLBCL Patients

Expert Advice for Newly Diagnosed DLBCL Patients

Transcript:

Katherine:

So, let’s start with a basic question, what is diffuse large B-cell lymphoma or DLBCL?

Dr. Nastoupil:

That’s a really important question. And I spend a lot of time when I first meet patients explaining to them there are a lot of different terms that are thrown around in lymphoma. Particularly, non-Hodgkin lymphoma is a term many patients will hear and even use. And I remind them that that is sort of an umbrella term that describes essentially every lymphoma that’s not Hodgkin lymphoma.

So, it’s really important to recognize that there are unique types of large cell lymphoma. And almost everything that we care about in terms of what the treatment will look like, whether or not we’re aiming to cure someone, or just maintain adequate disease control is primarily focused on the type of lymphoma someone has.

So, diffuse large B-cell lymphoma is the most common lymphoma subtype. Just in terms of its descriptive name, it is a B-cell cancer. And it is comprised of large cells that are essentially effacing or replacing the architecture of a lymph node.

There are different types, which I’m sure we’ll discuss. But, again, diffuse large B-cell lymphoma is our most frequent lymphoma we encounter.

Katherine:

What is B cell? What does that mean?

Dr. Nastoupil:

Sure. So, stepping back a little bit, I think most people when they know or have known someone with cancer, it is described as the organ it originates in. So, breast cancer’s a great example. That usually is breast tissue that is abnormal. It has malignant potential. And if it spreads beyond its capsule and specifically goes to a lymph node or another organ, generally that’s bad news.

Lymphoma is a cancer of the immune system. And there are various types of immune cells. B cells – they mature on and become plasma cells when they’re behaving normally. And their job is to generate antibodies so that we can develop immunity from exposures or infections we’ve had and we’ve recovered from.

So, if you develop a cancer in the B cell, depending what stage of development – if it’s a stem cell, for instance, that can lead to acute leukemia. If it’s an immature B cell, meaning it has not developed into a plasma cell, that’s, generally, where diffuse large B-cell lymphoma arises. So, these cells tend to live or spend most of their time in lymph nodes because they’re trying to mimic the behavior of a normal B cell where they’re waiting there for that exposure to happen.

So, these are generally not cancers that we try to cut out before they spread. They’re not spreading cancers in terms of how we generally think of those, meaning you’re not going to use surgery to treat it. And, oftentimes, there are malignant B cells kind of dispersed throughout the body because if you think about how your immune system should work, it should be able to fight off an infection anywhere and everywhere.

So, I think those are key things to keep in mind because oftentimes patients will have widespread involvement or lymph node involvement or bone involvement, and that’s just the nature of the disease and not necessarily something that is so far progressed we didn’t catch it early enough.

Katherine:

I see. Are there subtypes of DLBCL?

Dr. Nastoupil:

Yes, absolutely. So, again, stepping back, over the last 20 years, we have tried to understand why we’re able to cure about 60 percent of patients. But for the 40 percent that were not cured with standard treatment, their outcomes were generally poor, meaning most of those patients died as a result of their lymphoma.

And we’ve approached all of them the same. So, that would imply to us that there’s something inherently different about the large cell lymphoma cases that don’t respond to standard treatment. So, an attempt to try and define who those patients are before we initiate treatment, as technology has evolved, we’ve interrogated some of those biopsy samples to try and understand is there an underlying biologic rationale as to why some patients would have very, very disparate outcomes?

So, what we’ve learned is there are genes that are differentiated between different subtypes of large cell lymphoma. And we’ve described those subtypes based off those gene expression patterns. So, there is a germinal center type of large cell lymphoma. There’s a non-germinal center or activated B-cell type.

And then it gets much more complicated meaning there’s probably far more than just two subtypes. Right now, we’re describing at least five different subtypes. I think what’s important for patients to know is that we view this in terms of being able to predict who’s not going to have the typical course. And if we can define who they are, we might pursue something different, including potentially a clinical trial.

So, the subtypes I care the most about right now in terms of defining are the double hit or double expressors, those with other features that might lend itself to targeted therapy.

So, this is an evolving field and will continue I’m sure – that will have more subtypes defined over time. 

What Are the Subtypes of DLBCL?

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What Are the Subtypes of DLBCL? from Patient Empowerment Network on Vimeo.

What are the subtypes of diffuse large B-cell lymphoma (DLBCL)? Expert Dr. Robert Dean provides an overview of DLBCL subtypes and how treatments and outcomes can vary by a patient’s individual disease.

Dr. Robert Dean is a hematologist/medical oncologist at Taussig Cancer Institute at the Cleveland Clinic. Learn more about Dr. Dean, here.

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What Is Diffuse Large B-cell Lymphoma (DLBCL)?

Transcript:

Katherine:

Dr. Dean, welcome. Would you please introduce yourself?

Dr. Dean:

Certainly, and thank you for having me. My name’s Rob Dean, and I’m a hematologist and medical oncologist and a staff physician at the Cleveland Clinic Taussig Cancer Institute.

Katherine:

Excellent. Thank you. Let’s start with looking at understanding and treating DLBCL. What are the subtypes of DLBCL?

Dr. Dean:

The classification of diffuse large B-cell lymphoma has gotten a little more complicated as our understanding of it has gotten deeper. Once upon a time going back maybe 15, 20 years an awful lot of cases were sort of lumped together under the broad label of diffuse large B-cell lymphoma and we always understood in the field that some patients did very well and were cured with the standard treatments of the time and that those treatments didn’t work as well for some patients.

And it’s taken years to get to a somewhat deeper understanding of what the underlying differences are in those cases that help to explain why our treatment outcomes differ for different patients, and I would say that’s feeding forward into trying to identify better treatment options for the patients who are in higher-risk groups. So, one way of understanding the heterogeneity in diffuse large B-cell lymphoma, the differences between cases, is to think about the way in which the normal cells of the immune system that turn into this kind of cancer develop. If you think about the old Time-Life Magazine illustration of the evolution of man where you see the series of figures drawn from left to right going from sort of more primitive, kind of a –

Katherine:

Ape-like.

Dr. Dean:

– ape-like figure to a progressively more modern-looking human standing upright and walking on just their legs. The way that these immune cells, which are the antibody-making B cells of the immune system, develop from a more primitive cell, you can think of it in similar terms. And we understand that cases of diffuse large B-cell lymphoma most commonly arise from a couple of points in that process of maturation that these cells are passing through as they go from the most primitive form that they take to their most mature functional form in the end.

So, one of those subgroups is something called the germinal-centered B-cell. And that involves the part of the maturation process where these immune cells have left the bone marrow, passed into a lymph node, and are interacting with other immune cells as part of their education and development process.

When the cells mutate at that stage of their development and turn into diffuse large B-cell lymphoma, the cure rate for patients with large cell lymphomas coming from that stage of immune cell development tends to be a little higher with standard treatments. When the lymphoma cells arise from an immune cell that has passed beyond that point in the maturation process to what is referred to as an activated B-cell, then the cure rates with standard treatment historically have been a little lower.

And so, you can look at markers on the lymphoma cells, or the activation of different genes in the lymphoma cells, to try to determine whether they came from an immune cell that was in one or the other of those points in its maturation process. And we know that that correlates with outcomes. So, that’s one of the main breakdowns that have become possible in understanding sort of what’s going on under the hood in diffuse large B-cell lymphoma and why do we see different outcomes in different patients.

Katherine:

Right.

Dr. Dean:

The other major change comes from understanding that for cases of large B-cell lymphoma there are common chromosomal changes that result in turning on specific genes. And if some of those genes are present in the right combination, that can create a much more rapidly growing and more chemotherapy-resistant form of large B-cell lymphoma. The two genes that are most commonly involved in that kind of a change are something called BCL-2 which, when it’s turned on abnormally, helps protect the lymphoma cells from being killed or being sort of triggered into dying by chemotherapy medicine.

And another gene that’s called MYC, or M-Y-C is how that’s spelled, and what that gene does is it tends to cause the cells to proliferate more rapidly.

It turns on other pro-survival figures and controls a pretty broad range of different programs that drive the cells to grow more quickly. So, when you’ve got both of those changes at the same time that’s sometimes referred to as a “double-hit lymphoma.” And large cell lymphomas with that double-hit kind of chromosome change have been shown in studies to have a significantly lower cure rate with our most commonly used standard treatment for this form of lymphoma, what we call R-CHOP.

So, being able to recognize those changes in cases of large B-cell lymphoma is important nowadays, both in terms of being able to share prognostic information with patients, to be able to tell them what we think the likelihood of not just getting into remission but eventually being cured will be. And also, for some situations, considering whether a treatment other than the standard R-CHOP regimen might be a better option. 

Is COVID-19 Vaccination Safe and Effective for DLBCL Patients?

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Is COVID-19 Vaccination Safe and Effective for DLBCL Patients? from Patient Empowerment Network on Vimeo.

Is COVID-19 vaccination safe and effective for diffuse large B-cell lymphoma (DLBCL) patients? Dr. Jean Koff shares what’s currently known about COVID-19 vaccination for DLBCL patients and provides information about studies currently underway on immunocompromised patients.

Dr. Jean Koff is an Assistant Professor in the Department of Hematology and Oncology at Winship Cancer Institute at Emory University. Learn more about Dr. Koff, here.

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Transcript:

Katherine Banwell:

A question that’s on many people’s minds right now is if the COVID 19 vaccination is safe and effective for people with DLBCL? 

Dr. Koff:

So, I don’t think we have any reason to believe that it’s not safe. We haven’t seen any signals that it is not safe. I think there are reasonable concerns that for patients who either have active lymphoma where the lymphoma may be impacting their immune system and the immune system’s ability to mount the response that you need to get immunity when you get vaccinated. But even more so patients who are receiving some sort of therapy, especially chemotherapy and immunotherapy. Those types of treatments actually may knock out the same normal bystander immune cells that help you mount that immune response when you get vaccinated.   

And so, the concern there is that in those individuals either with active DLBCL or who are receiving treatment for DLBCL, that their immune systems might be somewhat compromised and not able to mount as robust of an immune response when they get vaccinated. 

And by extension, the vaccine may not work as well to protect them against COVID as it would in somebody who doesn’t have a compromised immune system. But what I’m counseling my patients is that if they are not actively receiving treatment that impacts their immune system like chemo or immunotherapy, I am recommending that they go ahead and get the vaccine.  Because to me the risk of COVID and COVID-related complications is very high. And the risk of complications from the vaccination is very low. And the protection that it offers – while we are not sure the level of protection that it offers in these special cases, some protection, if it does offer it is better than no protection. And the risk of immunization is low. We are actually doing the studies now at Emory.  

In specifically lymphoma patients who get the COVID vaccine. Whether they have active lymphoma or getting treatment in lymphoma, we’re doing the studies now to take a look and see whether they’re able to adequately mount immune responses to the COVID vaccine. So, that we can better counsel our patients on how effective these vaccines will be.   

So, once we have more mature data from our studies and from other centers, similar studies, we’ll be able to better estimate what the chances that the vaccine will be protective for an individual patient.

What Is Diffuse Large B-cell Lymphoma (DLBCL)?

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What Is Diffuse Large B-cell Lymphoma (DLBCL)? from Patient Empowerment Network on Vimeo.

What is diffuse large B-cell lymphoma (DLBCL) exactly? Dr. Jean Koff shares information about this specific type of lymphoma and explains why subtypes of DLBCL are important in determining optimal therapy.

Dr. Jean Koff is an Assistant Professor in the Department of Hematology and Oncology at Winship Cancer Institute at Emory University. Learn more about Dr. Koff, here.

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Transcript:

Katherine Banwell:

Hello, I’m Katherine Banwell, your host for today’s program. Joining me is Dr. Jean Koff. Dr. Koff, would you introduce yourself?

Dr. Koff:

Hi, I’m Dr. Jean Koff. I’m a lymphoma specialist and clinical researcher at Winship Cancer Institute of Emory University.

Katherine Banwell:

Great. Thank you for joining us. Well, let’s start with a definition. What is diffuse large B-cell lymphoma?

Dr. Koff:

So, we may want to back up and actually define what lymphoma is, because that may be unfamiliar to patients who are just getting a new diagnosis. So, lymphoma is a pretty general term, but it refers to a cancer that arises from white blood cells called lymphocytes. And normally these lymphocytes are part of your immune system. Normally they help to fight infections and even tumors. But sometimes in some patients often for reasons we don’t fully understand these lymphocytes, these white blood cells, part of your normal immune system can grow out of control to the point that they become a cancer. And when they do that, that’s called a lymphoma.

So, diffuse large B-cell lymphoma or DLBCL, is the most common, aggressive form of lymphoma. And we call it aggressive because it tends to grow quickly, and it tends to cause problems quickly.

Katherine Banwell:

Are there subtypes?

Dr. Koff:

There are and there are several different ways that you can subdivide DLBCL. One of the most common ways that DLBCL researchers and clinicians think about it is breaking it up into ABC and GCB subtypes. And what these subtypes are, are reflections of how the tumor expresses different genes and that makes it potentially susceptible to different types of therapy. Although we’re still trying to figure out the best way to target these different subtypes. You can also divide DLBCL up by other genes that it may express.

Patients may be familiar with the term double hit lymphoma that refers to a large cell lymphoma that has re-arrangements of certain genes, mainly MYC and either BCL-2 or BCL-6.

And then, there are other definitions that we can apply to DLBCL based on where the lymphoma arises. So, as you can see, there are lots of nuances into subdividing, this disease. There are lots of different varieties, and there are lots of subtleties. But one of the main breakdowns is between ABC and GCB.