Tag Archive for: lymphatic system

How to Make an Informed DLBCL Treatment Decision

How to Make an Informed DLBCL Treatment Decision from Patient Empowerment Network on Vimeo.

What factors help guide a diffuse large b-cell lymphoma (DLBCL) treatment decision? This animated video reviews important decision-making considerations and provides important steps for engaging in your DLBCL care.

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Transcript:

Carol: 

Hi, I’m Carol. Several years ago, I was diagnosed with a blood cancer known as DLBCL, which is short for diffuse large b-cell lymphoma.  

This is Dr. Williams, my hematologist. A hematologist is a doctor who specializes in the care and treatment of people with blood cancer. 

Dr. Williams, can you tell us more about DLBCL? 

Dr. Williams: 

Sure. DLBCL is the most common form of non-Hodgkin lymphoma. It may be isolated to the lymph nodes, or it may occur OUTSIDE of the lymphatic system in areas like the thyroid, skin, breast, bone, testes, gastrointestinal tract, or even other organs in the body. 

Carol: 

After I was diagnosed, Dr. Williams informed me that I would need to start treatment immediately. 

Dr. Williams: 

That’s right, Carol. DLBCL is considered aggressive and fast-growing, so treatment usually starts right away to control the disease and any symptoms it causes. 

Carol: 

When deciding on a therapy, my husband and I discussed the goals of treatment with Dr. Williams – we talked about the potential outcome for each approach and how options may impact my lifestyle. 

Dr. Williams, 

Exactly—we wanted to make sure that Carol could continue to live her life to the fullest while using the most effective approach to treat her disease.  

We also considered Carol’s: 

  • Age and overall health. 
  • The location and stage of her DLBCL at the time of treatment. 
  • Her lab test results, including molecular testing results. 
  • And the potential side effects of each option. 

Then we discussed Carol’s options if she didn’t respond to initial therapy or if she experienced a relapse.  

Carol:  

Along with Dr. Williams and the other members of my healthcare team, my husband Tony was another partner in my care. He helped me research DLBCL so I could understand more about my disease, which made me feel confident in discussions with my team.  

We also made list of questions together before my appointments so I wouldn’t forget anything, and Tony took notes during my visits.  His notes were helpful to us when talking about the appointment later and reviewing what our next steps may be. 

Dr. Williams: 

That’s great advice, Carol. It’s so important that patients feel empowered to ask questions and speak up. If you don’t feel comfortable with your providers or your treatment plan—or if you just want confirmation that you have explored all your options–consider seeking a second opinion or a consultation with a DLBCL specialist. 

Elena: 

Yes—and Dr. Williams always made me feel like a partner in my care– making conversations and decisions much easier for me. 

Dr. Williams: 

Exactly–the patient should always be at the center of care.  

Now, what steps can YOU take to be more engaged? 

  • Start by educating yourself about DLBCL. Ask your team for recommendations for credible sources of information. 
  • Then, consider a second opinion or a consult with a DLBCL specialist immediately following your diagnosis. 
  • Make a list of questions prior to your appointments and bring a friend or family member along to visits, if you can. They can help you absorb the information and take notes. 
  • Understand and articulate the goals of your DLBCL treatment plan and ask if a clinical trial may be right for you. 
  • Learn about your options and discuss the pros and cons of each approach with your doctor. 
  • Finally, speak up and share your questions and concerns. YOU are your own best advocate. 

Carol: 

That’s great advice, Dr. Williams. To learn more about DLBCL, visit powerfulpatients.org/DLBCL. 

Dr. Williams: 

Thanks for joining us! 

What Do You Need to Know About Follicular Lymphoma?

What Do You Need to Know About Follicular Lymphoma? from Patient Empowerment Network on Vimeo.

What should you and your loved ones know after a follicular lymphoma diagnosis? This animated video provides an overview of follicular lymphoma, current treatment options, and important steps for engaging in your care.

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Transcript:

What do you need to know if you or a loved one has been diagnosed with follicular lymphoma? 

Follicular lymphoma is a type of B-cell non-Hodgkin lymphoma. It is typically slow-growing and can begin in the lymph nodes, bone marrow, or other organs. The disease does not always cause symptoms. But if symptoms are present, they can include swollen lymph nodes, fever, unintentional weight loss, and night sweats.  

Follicular lymphoma is classified as “low grade” if the disease is slow-growing, or “high grade,” if the disease is more aggressive and growing more rapidly. 

Follicular lymphoma is staged to understand where the lymphoma is in the body and to help determine which treatment options are best. There are four stages – 

  • Stage I, in which the lymphoma is localized in one single lymph node area or one non-lymph node site. When there is a non-lymph node site involved, an “E” is added to the stage, meaning “extra nodal.” 
  • In stage II, the lymphoma is in two or more areas on one side of the diaphragm. Again, “E” designation means that there is a non-lymph node site involved. 
  • Stage III means the lymphoma is in two or more lymph node areas above and below the diaphragm. 
  • And finally, stage IV is when the lymphoma is widespread, with involvement above and below the diaphragm, including at least one non-lymph node site. 

Unlike in many other types of tumors, stage IV follicular lymphoma is often very treatable, because lymphomas tend to be sensitive to many different therapies. 

Treatment recommendations are based on a variety of factors, including: 

  • Disease stage 
  • Tumor size and tumor grade 
  • Disease symptoms 
  • And a patient’s age and overall health 

For some patients, treatment doesn’t begin right away, and an approach called “watchful waiting,” “observation,” or “active surveillance” is used to monitor the progression of the disease. This usually involves regular oncology clinic visits and lab checks – and sometimes repeat imaging scans. 

When it is time to treat, options may include: 

  • Radiation therapy 
  • Chemotherapy 
  • Targeted therapy 
  • Immunotherapy 
  • Or cellular therapy, such as CAR T-cell therapy or a bone marrow transplant. 

Your physician may also recommend clinical trial options. 

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

  • First, continue to educate yourself about your condition. Ask your healthcare team to recommend credible resources of information.  
  • Next, understand the goals of treatment and speak up about your personal preferences.
  • Consider a second opinion or a consult with a specialist following a diagnosis to confirm your treatment approach.
  • And, write down your questions before and during your appointments. Visit powerfulpatients.org/FL to access office visit planners to help you organize your thoughts. Bring loved ones to your appointments to help you recall information and to keep track of important details.
  • Ask your doctor whether a clinical trial might be right for you.
  • 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 follicular lymphoma and to access tools for self-advocacy, visit powerfulpatients.org/Follicular. 

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

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

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

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?

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.  

Emerging DLBCL Treatments That Patients Should Know About

Emerging DLBCL Treatments That Patients Should Know About from Patient Empowerment Network on Vimeo.

Are there new diffuse large B-cell lymphoma (DLBCL) treatment options? Dr. Kami Maddocks reviews developing research and approaches and what these advances could mean for patients.

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:

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 and loncastuximab, 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 tafasitamab 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. 

Is My DLBCL Treatment Working? What Happens If It Doesn’t Work?

Is My DLBCL Treatment Working? What Happens If It Doesn’t Work? from Patient Empowerment Network on Vimeo.

Diffuse large B-cell lymphoma (DLBCL) expert Dr. Kami Maddocks describes how a treatment’s effectiveness is evaluated and reviews the options available for refractory patients.

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.

See More From The Pro-Active DLBCL Patient Toolkit

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Transcript:

Katherine:

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:

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 (Rituxan) 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.  

Understanding DLBCL Treatment Classes

Understanding DLBCL Treatment Classes from Patient Empowerment Network on Vimeo.

Dr. Kami Maddocks reviews diffuse large B-cell lymphoma (DLBCL) treatment approaches, including options for patients who are considered high-risk or who have relapsed. Dr. Maddocks goes on to review which factors are considered when selecting a therapy and the potential for curative treatment.

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:

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. Maddock:

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:

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:

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.  

What Is the Patient’s Role in Their DLBCL Care?

What Is the Patient’s Role in Their DLBCL Care? 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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Understanding DLBCL Treatment Classes


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.  

Follicular Lymphoma Research and Treatment Updates

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

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

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

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Emerging Follicular Lymphoma Treatment Approaches


Transcript:

Katherine Banwell:

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

Dr. Matasar:

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

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

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

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

Katherine Banwell:

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

Dr. Matasar:

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

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

Katherine Banwell:

That sounds so promising. 

Why Should Follicular Lymphoma Patients Seek a Second Opinion?

Why Should Follicular Lymphoma Patients Seek a Second Opinion? from Patient Empowerment Network on Vimeo.

Lymphoma expert Dr. Matthew Matasar encourages patients to take an active role in their care and explains why they should feel comfortable seeking a second opinion.

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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What Is the Patient Role in Follicular Lymphoma Treatment Decisions?


Transcript:

Katherine Banwell:

What is your advice to patients who may feel like they’re hurting feelings by seeking a specialist or a second opinion? Any advice for self-advocacy?  

Dr. Matasar:

I would say there is this. Any doctor who is taking care of you and doesn’t want you to have the best information and the best options is not a very good doctor. This is never about the doctor. It’s not about me. It’s about you. And if a doctor’s ego is getting in the way of a patient getting the best care, the best options, the most modern and up-to-date available information around their illness and around how best to take care of it, that doctor better check themselves.  

Similarly, the patient should understand that it’s about you. It’s not about me or your other doctors, or anything. It’s about you getting what you deserve, which is the clearest insight and the most appropriate treatment options available. And you should have no reservations in seeking that out, and honestly most oncologists are happy to have you get a second opinion, because they’ll feel more supported in your care. It’s stressful to be an oncologist sometimes too. And for you to get a second opinion from an expert and the expert says, “You know what? Yeah, your oncologist is spot-on.” 

That can be very validating and reassuring. And then, that expert oncologist is a resource to your local oncologist, and they can work together in your care. Everybody works better as a team. It’s just as true for oncologists as for anybody.  

Three Key Steps for Newly Diagnosed Follicular Lymphoma Patients

Three Key Steps for Newly Diagnosed Follicular Lymphoma Patients from Patient Empowerment Network on Vimeo.

Once a patient has been diagnosed with follicular lymphoma, what’s next? Lymphoma expert Dr. Matthew Matasar shares his expert advice on key next steps for newly diagnosed patients.

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

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Follicular Lymphoma Research and Treatment Updates


Transcript:

Katherine Banwell:

What three key pieces of advice would you have for a patient who has just been diagnosed with follicular lymphoma?  

Dr. Matasar:

The first thing I would say is that everybody should have access to a second opinion pathology review.  

This is independent of what the doctors are giving you advice in taking care of the illness, but just making sure that the diagnosis itself is correct. We know that the diagnosis of lymphoma is a tricky one for pathologists, particularly if they’re not pathologists that are seeing lymphoma under the microscope every day of the week. And when you go for a second opinion pathology review by having the slides sent to a major academic center, there’s a possibility that the diagnosis will be changed or revised in a way that’s meaningful meaning that it would lead to different recommendations for how to take care of your illness.  

The second is that you’re entitled to a second opinion medical review as well and going to see an expert in lymphoma if your first opinion was with a community oncologist or somebody referred by your primary care doctor who may not have singular expertise in these illnesses, can be helpful. It can be reassuring if that doctor says, “You know what? I agree with your local oncologist, and I’m happy to collaborate with their care.” 

Or they may say, “You know, we have a different perspective. There’s newer data. There’s newer options. There’s clinical trials. There’s other resources to bring to bear,” and maybe your choices are broader than you may have originally believed.  

And the third is just to be that advocate for yourself, to take charge, and to participate in your care. Let your doctors know who you are, how you view things, how you like to receive your healthcare information. Are you a big picture or a detail person, and what are your priorities so that they can best match their recommendations to who you are as an individual, as a person, as a member of a family in the community so that they can give you the most personalized and appropriate recommendations possible.  

Katherine Banwell:

Why should patients consider seeing a follicular lymphoma specialist?  

Dr. Matasar:

I think that it’s increasingly important when you’re looking at a diagnosis of follicular lymphoma to consider seeking an expert second opinion from a lymphoma specialist. And this is because our understanding of this disease is changing very rapidly. The therapeutic armamentarium is changing very rapidly with new treatments becoming available every year. And sometimes a community oncologist who is required to be expert in many different diseases may not have access to the same body of information or the same insights that somebody who specializes in this disease may have at their fingertips.  

What Is Follicular Lymphoma? What Are the Symptoms?

What Is Follicular Lymphoma? What Are the Symptoms? from Patient Empowerment Network on Vimeo.

Lymphoma expert Dr. Matthew Matasar defines follicular lymphoma and provides an overview of common disease symptoms.

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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Follicular Lymphoma Research and Treatment Updates


Transcript:

Katherine Banwell:

What is follicular lymphoma? 

Dr. Matasar:

Good question. So, follicular lymphoma, the first thing to say is that it’s a type of lymphoma. And lymphomas are cancers of lymphocytes, of immune cells. So, these illnesses are all cancers that come from and are of the immune system. There’s a tremendous variety of lymphomas, more than 100 different types, and these range from the slowest-growing to the fastest-growing things, and everything in between. But follicular lymphoma is one of the more common of these 100 plus diseases.  

It’s actually the second most common in America, and the most common of what we call the indolent, or naturally slow-growing, B-cell lymphomas. It’s called follicular lymphoma, because the stage of lymphocyte growing up at which we think the cells went wrong was when they normally live inside of these little nests, or follicles, inside of lymph nodes. People get confused. They’re like follicular, is that like hair follicles? It’s not that I have that many left. But no, it’s really about the lymph node follicles. And that’s sort of the stage at which we think that the cells went wrong.  

Katherine Banwell:

What are the symptoms of follicular lymphoma?  

Dr. Matasar:

So, it’s a very variable illness. Sometimes, this is a disease that presents with symptoms. People have swollen lymph nodes, swollen glands that they feel or that their doctors felt, or they have lymph nodes or other growths in the body that are causing pain or discomfort. More typically, however, this will be found accidentally doing testing for other purposes.  

You have a kidney stone, and your doctors do a CAT scan to look at the kidney stone. And they say, “Oh, what are those lymph nodes swollen about? What’s that about? We should probably figure out what’s going on there.” And then, there’s the third group which sort of present with what we all vague or constitutional symptoms, which is stuff like progressive fatigue, or maybe even fevers, or night sweats. But fatigue is a very common symptom that sometimes don’t even realize was there until sort of hindsight when they’re feeling better. And they’re like, “Wow, I didn’t know I could feel this good. I guess I’ve been tired for these last years. And I feel so much better. Thanks, doc.” 

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

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

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

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

See More from The Pro-Active Follicular Lymphoma Patient Toolkit

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Why Should Follicular Lymphoma Patients Seek a Second Opinion?

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What Is the Patient Role in Follicular Lymphoma Treatment Decisions?

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

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


Transcript:

Katherine Banwell:

How do you empower patients? 

Dr. Matasar:

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

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

Katherine Banwell:

Why is it important to empower patients? 

Dr. Matasar:

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

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

Katherine Banwell:

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

Dr. Matasar:

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