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What Do You Need to Know About Follicular Lymphoma?

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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. 

How Do Genetic Mutations Impact a CLL Patient’s Prognosis?

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How Do Genetic Mutations Impact a CLL Patient’s Prognosis? from Patient Empowerment Network on Vimeo.

What is the best approach for chronic lymphocytic leukemia (CLL) patients with genetic mutations? CLL expert Dr. Seema Bhat shares how mutations impact prognosis and treatment.

Seema Bhat, MD is a hematologist at The Ohio State University Comprehensive Cancer Center – The James. Learn more about Dr. Bhat.

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Transcript:

Katherine:

Okay, that’s great. Here’s one from Phil, “How do mutations affect longevity when surviving CLL? What new treatments help with P53 mutation?”  

Dr. Bhat:

So, there are certain prognostic markers for CLL, meaning certain tests that can tell us how a particular patient is expected to do. Some of these tests detect presence or absence of mutations in certain genes. For example, the IGHV gene can be mutated or unmutated. 

In patients with mutated IGHV, they do well, and patients with unmutated IGHV tend to have a more aggressive disease and may require treatment sooner. Similarly, TP53 mutations also tend to require treatment sooner, and more of these mutations do not respond well to conventional chemotherapy. However, targeted therapy has changed the outlook for these mutations, and it works very well for both these mutations. 

Managing CLL Symptoms and Treatment Side Effects

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Managing CLL Symptoms and Treatment Side Effects from Patient Empowerment Network on Vimeo.

Chronic lymphocytic leukemia (CLL) expert Dr. Seema Bhat reviews common CLL symptoms and treatment side effects and approaches for managing them. Dr. Bhat stresses the importance of sharing any issues they may be having with their healthcare teams.

Seema Bhat, MD is a hematologist at The Ohio State University Comprehensive Cancer Center – The James. Learn more about Dr. Bhat.

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Transcript:

Katherine:

Can you please talk about common side effects of CLL – which, of course, we’ve covered already, but both the ones from the disease itself and then ones related to treatment, and what can be done about these? 

Dr. Bhat:

So, disease-related side effects, or we call them disease-related symptoms, include fatigue as a common symptom. Unintentional weight loss can happen. Fevers, chills, or drenching night sweats can happen. We call them, “B symptoms.” Spleen can enlarge, and the enlargement can cause belly pain or feeling of fullness quickly after a meal since spleen is close to our stomach, and as it enlarges, it limits the space stomach can take up in the belly. Lymph nodes can enlarge and can get uncomfortable. So, if any of these symptoms happen, then we have to treat the CLL, and once we start treating the CLL these symptoms should go away. 

As far as treatment-related side effects are concerned, for example, BTK inhibitors are associated with a certain set of side effects. For example, patients can have muscle cramping, muscle pain, joint pain. Patients can have diarrhea. Some of the side effects that we worry about is change in heart rhythm, for example, atrial fibrillation. We talked about that, or increased risk of bleeding.  

Those are some of the side effects we worry about, and if those were to develop, then, of course – for example, a patient has atrial fibrillation, and if it’s symptomatic, we hold the medication. We take care of the atrial fibrillation, usually in collaboration with cardiologists, and once that’s under control, then we have to decide what to do with the treatment. If the atrial fibrillation is under control, we can re-initiate the treatment, or we can go to one of the next-generation BTK inhibitors – the acalabrutinib (Calquence), the pirtobrutinib (LOXO-305), which have less of those side effects. 

Bleeding tends to be a concern, but anything that reduces the risk of bleeding like other medications, aspirin, clopidogrel (Plavix), other blood thinners, we can avoid them, monitor these patients very closely for any of these side effects, so that’s critical. With venetoclax, it’s usually very well-controlled. It’s the initial part of treatment that tends to be a little bit intensive because of the specific side effect called, “tumor lysis syndrome,” which means that the drug works very quickly, and cells die off quickly, they can release stuff in the blood, and things can collect in the blood. 

Uric acid can go up, electrolytes can be up, any number can go up. So, we are aware of this side effect, and we actually pre-emptively have things in place that can prevent this from happening, or if it happens, we manage it right away. For example, venetoclax has a specific dose initiation. For example, it’s called, “dose ramp-up.” We start it at a lower dose, 20 milligrams, for one week. Escalate it to 50 the next week, 100 the third week, 200 fourth week, and 400 the last week, which is the standard dose. They continue on 400 from there onward. 

And even with the slow dose escalation, in the early couple of weeks, we monitor them very closely. Once we initiate a dose, we bring them back to the clinic to recheck their blood work to see if there are any changes. If any changes have happened, we hydrate them, initiate medication for their tumor lysis syndrome. 

If the risk of tumor lysis is very high, then we monitor then admit them to the hospital. Otherwise, long-term side effects of venetoclax, what we have noticed mostly is gastritis, most side effects – mostly diarrhea. But that’s usually well-controlled. We can manage it well with supportive care. 

Emerging CLL Treatment Approaches

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Are there emerging CLL treatments that are showing promise? Dr. Seema Bhat provides an overview of ongoing research and discusses when CLL patients should consider clinical trials. 

Dr. Seema Bhat is a hematologist at The Ohio State University Comprehensive Cancer Center – The James. Learn more about Dr. Bhat here.

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Transcript:

Katherine:  

Dr. Bhat, where do clinical trials fit into treatment? 

Dr. Bhat:  

So, clinical trials play a very important role to advance treatments. Clinical trials for CLL are done to test new treatments, new combinations of treatments, compare different treatments to each other. The goal of these clinical trials is to continue to do better than what we currently have available. This is how treatments improve. Despite all the advancements that we have had in CLL, in the recent years, it continues to be an incurable disease, even today. Our goal as researchers is never to stop until we get to that cure, and clinical trial is that pathway to that cure.

Katherine:

Are there emerging therapies that are showing promise? 

Dr. Bhat:

Yes, of course. There are a number of emerging therapies that are showing promise. So, we all know about ibrutinib and other BTK inhibitors. These work very well, but sometimes the disease can get resistant to these medications, meaning that it stops responding to these treatments. We are excited about this new kind of BTK inhibitor called, “pirtobrutinib,” which has shown great promise in these resistance cases, and we are hopeful that it’ll be approved soon. 

Katherine:

Are there other options that patients have? 

Dr. Bhat:

So, we all hear about what is called, “chimeric antigen receptor T-cell therapy,” or CAR-T therapy. This is studied under clinical investigation for CLL and looks very promising. The therapy uses the person’s own immune cell called, “T cell” to identify and attack cancer cells. 

T cells are taken from the patient’s blood and sent to a specific lab. There, the cells are modified so that they can better find and attack cancer cells. These modified T cells are then re-injected back into the patient to find and fight that cancer, to eradicate the disease. So, this looks very promising.  

How Are Targeted CLL Treatments Administered?

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How Are Targeted CLL Treatments Administered? from Patient Empowerment Network on Vimeo.

Chronic lymphocytic leukemia (CLL) expert Dr. Seema Bhat explains how self-administered oral treatments work for CLL patients and what potential side effects doctors are watching out for. 

Dr. Seema Bhat is a hematologist at The Ohio State University Comprehensive Cancer Center – The James. Learn more about Dr. Bhat here.

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Transcript:

Katherine:

How are targeted therapies administered? 

Dr. Bhat:

So, most of the targeted therapies that we have, we are happy to say that these are oral agents. The BTK inhibitors, the three that we have available, are oral agents. Ibrutinib is taken once a day, zanubrutinib and acalabrutinib are twice a day. Venetoclax, similarly, is an oral agent and is taken once a day. Monoclonal antibodies are also considered targeted agents. These are given as infusions in the clinic or in the clinician’s office.  

Katherine:

The oral medications, patients take that at home? They don’t have to go into the hospital?  

Dr. Bhat:

They do not have to go into the hospital. However, venetoclax is associated with a specific side effect called, “tumor lysis syndrome,” where this medication works so well that initially the cells with die off quickly and then things can collect in the blood.  

For example, uric acid can go up, electrolytes can be up, any number can go up. So, we monitor what those initial weeks of starting venetoclax, we monitor patients very closely. We have them come back and forth to the clinic for monitoring, bloodwork, maybe hydration. And sometimes, if we think they’re at a very high risk for this tumor lysis syndrome, we admit them to the hospital.  

After we cross that, those are administered at home. They can take these at home. 

Understanding CLL Treatment Classes

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Understanding CLL Treatment Classes from Patient Empowerment Network on Vimeo.

Chronic lymphocytic leukemia (CLL) expert Dr. Seema Bhat explains the different treatment classes available for CLL patients and how the standard of care has evolved.

Dr. Seema Bhat is a hematologist at The Ohio State University Comprehensive Cancer Center – The James. Learn more about Dr. Bhat here.

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Transcript:

Katherine Banwell:

Dr. Bhat, when it’s time to start therapy, what types of treatments are available for CLL patients? 

Dr. Bhat:

So, when we think about treatment for cancer, we think about chemotherapy – the conventional chemotherapy that’s associated with side effects like hair loss, nausea, or vomiting. I’m very happy to say that conventional chemotherapy is no longer the standard of care for patients with CLL. Patients who need treatment for CLL are nowadays treated with what are called, “targeted agents.” 

And we have, in general, two different classes of targeted agents that have been approved for treatment for CLL. We have the BTK inhibitors, Bruton’s tyrosine kinase inhibitors, of which we have three. We have ibrutinib, we have acalabrutinib, and we have zanubrutinib. Then we have BCL-2 inhibitors, of which we currently have one approved, of which is called venetoclax. These treatments can be combined with monoclonal antibodies, which are directed towards the antigen called CD20. For example, rituximab or obinutuzumab. 

Typically, venetoclax is combined with monoclonal antibody as a time-limited therapy. BTK inhibitors usually are not combined with monoclonal antibody. 

Katherine:

What about stem cell transplant, does that fit in there? 

Dr. Bhat:

So, stem cell transplant still has a role for treatment of patients with CLL, but it has moved down the line with such highly effective and well-tolerated oral agents available. 

But, for refractory patients – what we call dual-refractory patients, we definitely are, especially in high – patients who have higher risk features, we do refer them to stem cell transplant. 

Katherine:

And what is a dual-refractory patient, exactly? 

Dr. Bhat:

Dual-refractory patients mean patients who have had a BTK inhibitor, be it ibrutinib, acalabrutinib, or zanubrutinib, and the disease has progressed on that. And then we give them venetoclax, which is a BCL-2 inhibitor. So, these are the two classes of targeted agents that we have available. If they have received ibrutinib, acalabrutinib, or zanubrutinib, and after that, a venetoclax, or venetoclax followed by a BTK inhibitor, and the disease has progressed on both. These patients are called dual-refractory, and currently they tend to be very resistant to whatever treatments we have available. And we looked at other modalities of treatment, be it clinical trials or stem cell transplants for that.  

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. 

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

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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.

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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

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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.  

Thriving With CLL | Tips and Support for Navigating Care

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Thriving With CLL | Tips and Support for Navigating Care from Patient Empowerment Network on Vimeo.

What are the key elements that help patients thrive with chronic lymphocytic leukemia (CLL)? In this webinar, Dr. Seema Bhat discusses CLL treatment and research, explains how the side effects and symptoms of CLL are managed, and shares tools for managing daily life with CLL.

Seema Bhat, MD is a hematologist at The Ohio State University Comprehensive Cancer Center – The James. Learn more about Dr. Bhat.

See More from Thrive CLL

Related Resources:

 

Expert Advice for CLL Self-Advocacy

Expert Advice for CLL Self-Advocacy

CLL Treatment Approaches: What Are the Types?

Setting CLL Treatment Goals WITH Your Team

Transcript:

Katherine:

Hello, and welcome. I’m Katherine Banwell, your host for today’s program. Today’s webinar is part of our Thrive series, and we’re going to discuss tools for navigating life with CLL. Before we get into the discussion, please remember that this program is not a substitute for seeking medical advice. Please refer to your healthcare team about what might be best for you.  

Let’s meet our guest today. Joining us is Dr. Seema Bhat. Dr. Bhat, welcome. Would you please introduce yourself? 

Dr. Bhat:

Hi, Katherine. Thank you for having me here on the program. My name is Seema Bhat, and I am an associate professor at Ohio State University with expertise in treating CLL.  

Katherine:

Excellent, thank you so much for taking time out of your schedule to join us. 

Dr. Bhat:

You’re welcome. 

Katherine:

Like all of the webinars in our Thrive series, we start with this question. In your experience, what does it mean to thrive with CLL? 

Dr. Bhat:

So, thriving with CLL to me means that we envision our patients with CLL leading normal, functional, and productive lives. You know, when patients hear the word “cancer,” or “leukemia,” it comes as a big shock to them. Cancer is also associated with drastic changing – life-changing experiences. Patients think about their shortened life span, and the difficulties they’ll have to endure in this shortened life span due to the treatments they will be needing for their cancer. But I want to tell my patients that even though they have a leukemia, they have a cancer, they can still focus on their life in general. 

They have – this has been made possible by very effective yet gentle treatments approved for CLL. Patients can have an enjoyable, fulfilling life focusing on their life in general, and thrive. 

Katherine:

Thank you for that, Dr. Bhat. That’s important for patients to know. Let’s move on to treatment and walk through CLL treatment classes and types. Some of our audience members may already know this information, but it’s a good baseline for newly diagnosed patients. First, CLL patients are often put in “watch and wait” when they’re first diagnosed. What does that mean? 

Dr. Bhat:

So, “watch and wait” means observation. CLL is a slow-growing cancer, generally, and one of the few cancers that’s managed by observation if it’s not causing any problems to the patient. These problems could include symptoms in the form of fatigue, unintentional weight loss, symptomatic enlargement of their lymph nodes or spleen, or we could see changes in their blood work in the form of decreased hemoglobin or decreased platelets. 

If this is not happening, observation is still the standard of care. And data from this comes from a number of clinical trials where patients were treated based on just having the disease without having any of the symptoms or signs I just mentioned. 

All these studies had negative results, meaning that starting treatment at diagnosis did not affect the overall survival of these patients. These patients – these studies were, however, done in chemoimmunotherapy era. Now, we have targeted agents. And also, now we are able to define CLL better, which means that we are able to predict who has higher risk disease. 

So, there’s renewed interest in these – what these are called, early intervention studies. But until we have those results are matured and available, “watch and wait” is still the standard approach. And during “watch and wait,” we see patients at regular intervals, we assess them for symptoms, we look at their bloodwork, and one of the main reasons for seeing these patients at regular intervals is to reinforce what symptoms we want them to pay attention to. So, educating patients at each visit is a very important part of these visits. 

“Watch and wait” may be all that 1/3 of our patients may need through their lifetime. They may never need any CLL-directed treatment. 

Katherine:

Dr. Bhat, when it’s time to start therapy, what types of treatments are available for CLL patients? 

Dr. Bhat:

So, when we think about treatment for cancer, we think about chemotherapy – the conventional chemotherapy that’s associated with side effects like hair loss, nausea, or vomiting. I’m very happy to say that conventional chemotherapy is no longer the standard of care for patients with CLL. Patients who need treatment for CLL are nowadays treated with what are called, “targeted agents.” 

And we have, in general, two different classes of targeted agents that have been approved for treatment for CLL. We have the BTK inhibitors, Bruton’s tyrosine kinase inhibitors, of which we have three. We have ibrutinib (Imbruvica), we have acalabrutinib (Calquence), and we have zanubrutinib (BGB-3111). Then we have BCL-2 inhibitors, of which we currently have one approved, of which is called venetoclax (Venclexta). These treatments can be combined with monoclonal antibodies, which are directed towards the antigen called CD20. For example, rituximab (Rituxan) or obinutuzumab (Gazyva). 

Typically, venetoclax is combined with monoclonal antibody as a time-limited therapy. BTK inhibitors usually are not combined with monoclonal antibody. 

Katherine:

What about stem cell transplant, does that fit in there? 

Dr. Bhat:

So, stem cell transplant still has a role for treatment of patients with CLL, but it has moved down the line with such highly effective and well-tolerated oral agents available. 

But, for refractory patients – what we call dual-refractory patients, we definitely are, especially in high – patients who have higher risk features, we do refer them to stem cell transplant. 

Katherine:

And what is a dual-refractory patient, exactly? 

Dr. Bhat:

Dual-refractory patients mean patients who have had a BTK inhibitor, be it ibrutinib, acalabrutinib, or zanubrutinib, and the disease has progressed on that. And then we give them venetoclax, which is a BCL-2 inhibitor. So, these are the two classes of targeted agents that we have available. If they have received ibrutinib, acalabrutinib, or zanubrutinib, and after that, a venetoclax, or venetoclax followed by a BTK inhibitor, and the disease has progressed on both. These patients are called dual-refractory, and currently they tend to be very resistant to whatever treatments we have available. And we looked at other modalities of treatment, be it clinical trials or stem cell transplants for that. 

Katherine:

How are targeted therapies administered? 

Dr. Bhat:

So, most of the targeted therapies that we have, we are happy to say that these are oral agents. The BTK inhibitors, the three that we have available, are oral agents. Ibrutinib is taken once a day, zanubrutinib and acalabrutinib are twice a day. Venetoclax, similarly, is an oral agent and is taken once a day. Monoclonal antibodies are also considered targeted agents. These are given as infusions in the clinic or in the clinician’s office.  

Katherine:

The oral medications, patients take that at home? They don’t have to go into the hospital? 

Dr. Bhat:

They do not have to go into the hospital. However, venetoclax is associated with a specific side effect called, “tumor lysis syndrome,” where this medication works so well that initially the cells with die off quickly and then things can collect in the blood.  

For example, uric acid can go up, electrolytes can be up, any number can go up. So, we monitor what those initial weeks of starting venetoclax, we monitor patients very closely. We have them come back and forth to the clinic for monitoring, bloodwork, maybe hydration. And sometimes, if we think they’re at a very high risk for this tumor lysis syndrome, we admit them to the hospital.  

Dr. Bhat:

After we cross that, those are administered at home. They can take these at home. 

Katherine:

Dr. Bhat, where do clinical trials fit into treatment? 

Dr. Bhat:

So, clinical trials play a very important role to advance treatments. Clinical trials for CLL are done to test new treatments, new combinations of treatments, compare different treatments to each other. The goal of these clinical trials is to continue to do better than what we currently have available. This is how treatments improve. Despite all the advancements that we have had in CLL, in the recent years, it continues to be an incurable disease, even today. Our goal as researchers is never to stop until we get to that cure, and clinical trial is that pathway to that cure.  

Katherine:

Are there emerging therapies that are showing promise?  

Dr. Bhat:

Yes, of course. There are a number of emerging therapies that are showing promise. So, we all know about ibrutinib and other BTK inhibitors. These work very well, but sometimes the disease can get resistant to these medications, meaning that it stops responding to these treatments. We are excited about this new kind of BTK inhibitor called pirtobrutinib which has shown great promise in these resistance cases, and we are hopeful that it’ll be approved soon. 

Katherine:

Are there other options that patients have? 

Dr. Bhat:

So, we all hear about what is called, “chimeric antigen receptor T-cell therapy,” or CAR-T therapy. This is studied under clinical investigation for CLL and looks very promising. The therapy uses the person’s own immune cell called, “T cell” to identify and attack cancer cells. 

T cells are taken from the patient’s blood and sent to a specific lab. There, the cells are modified so that they can better find and attack cancer cells. These modified T cells are then re-injected back into the patient to find and fight that cancer, to eradicate the disease. So, this looks very promising. 

Katherine:

Many CLL community members are interested in learning more about their disease. So, for newly diagnosed patients, what are a few educational resources you recommend to help them learn more about their condition? 

Dr. Bhat:

There are a number of well-established support groups or educational resources for our patients. These include the CLL Society, The Leukemia & Lymphoma Society, Lymphoma Research Foundation, and then we have Patient Empowerment Network, and we have Patient Power. All these resources provide support groups, organize webinars, and have educational material for our patients. 

Katherine:

What about patients who have been living with CLL for many years, or are quite knowledgeable about their disease? Are there more advanced resources for patients to stay up to date on the latest research and treatment? 

Dr. Bhat:

So, for patients who want to search for additional resources, especially looking for clinical trials, going on this website called clinicaltrials.gov, they can first search for CLL-related clinical trials. Also, NCCN, or “National Comprehensive Cancer Network,” has patient resources for each disease, and then they can find information on CLL there, also. I would also like to say that Google is a good resource, as long as you know where it is taking you. 

Katherine:

Exactly. You may not be able to rely on everything you find. 

Dr. Bhat:

Right.  

Katherine:

Yeah. Many people with CLL will experience fear and anxiety, whether it’s the stress of being in “watch and wait” or worrying about regression. Why do you feel it’s important for patients to share how they’re feeling with their healthcare team? 

Dr. Bhat:

So, one of the important things to know about CLL is that CLL, at this point of time, it’s not a curable disease. It is a lifelong disease. Patients will have to deal with CLL for the rest of their life in some form or other, either on watchful waiting, or on active treatment, or if they’ll complete a treatment, they’ll have this lurking fear of relapse at any time. A large part of what I do is to help my patients understand what it means to live with CLL. And, of course, anxiety is a big part of that living with CLL. 

Although at this time, we’re unable to cure our patients with CLL, I want my patients to understand that it’s very treatable, treatments are very well-tolerated with low toxicity, and patients live a long life. They can have good, productive, and active life. They should ask their care team about resources for social, emotional, and physical support. 

They should let them know about their concerns, talk about their feelings. 

Katherine:

That’s my next question, actually. How can a social worker provide support and are there other healthcare team members who might be able to help? 

Dr. Bhat:

So, yes, patients are on a rollercoaster – emotional rollercoaster with this diagnosis. With this diagnosis come lots of unknowns. Worries about possible shortened life span, anxiety over treatment, and effects of treatment. So, there’s lots to deal with, and lot of uncertainty, which causes a feeling of hopelessness for these patients. So, psychological support is very important. That’s where the role of social worker comes in. 

We get them involved to help patients deal with the diagnosis, and social workers – they can provide patients with tools to cope with this life-changing event. They use life tools like encouraging positive thinking, mindfulness, being aware of what the patient can control involving faith and family, and also involving self-care. 

That’s where we see the role of the whole team as such. If patients are having more difficulties, we can have other members of a team, like a mental health provider, connect with our patients. Social workers and other members of the team can help our patients get connected to support groups, or even to other patients who have had similar experiences. 

Katherine:

What about worry and anxiety related to COVID and compromised immunity? What would you like patients to know? 

Dr. Bhat:

So, COVID has become another source of anxiety, unfortunately, for many of our patients, and rightly so. Our patients with CLL are considered immunocompromised, meaning that their immune systems do not work that well, which makes these patients very susceptible to different kinds of infections, COVID being one of them. And this was actually shown by some of the early COVID-related studies that showed a very high mortality in patients with CLL. 

This has improved now, mostly because now we are better equipped to handle COVID. We have COVID-directed medications available, but the major impact has been made by the vaccines. So, we highly encourage our patients to get vaccinated against COVID and keep up to date with the latest CDC guidelines. Also, we have Evusheld available, which is under emergency use authorization, and our patients with CLL, due to their weaker immune system, are eligible to get this, which adds an extra layer of protection for our patients. 

Also, it’s important to know that our test – if our patients test do test positive for COVID, they should let their team of doctors know immediately, since now we have monoclonal antibodies and pills that can be used to treat symptomatic COVID. 

Katherine:

That’s great information, thank you. Financial concerns can be another source of stress for people with CLL. Obviously, everyone’s situation is different, of course, but what resources are available for patients who need financial support?  

Dr. Bhat:

So, financial barriers can be a real concern for our patients. Targeted therapies are very expensive, and although insurances do cover them, the approved FDA drugs, copays can be very high, and this adds on because our patients with – our treatments with CLL, some of them tend to be indefinite. That means patients have to take those medications on an ongoing basis, and when they face such situations, high copays, we look into financial assistance. We look for funding for copay assistance, and funding can be provided by pharmaceutical companies. We can also apply for grants through The Leukemia & Lymphoma Society and other resources to help out our patients with these financial concerns. 

Katherine:

So, does the patient work with the healthcare team to find financial support? 

Dr. Bhat:

Absolutely. We at our institution have what is called, “MAP,” or Medication Assistance Program. 

And when we see that – we run the medications through the insurance, then we see the copay is high, we refer our patients to the MAP program, and then they take over. They find them grants, they find them assistance through be it pharmaceuticals, copay assistance programs. So, invariably, almost all patients who come and see us are helped through that program.  

Katherine:

What about a nurse navigator or patient navigator? What do they do? How can they help? 

Dr. Bhat:

Well, so yes. Nurse navigators and patient navigators are also very important for caring for our patients. So, patients can have, besides our care for our patients which includes caring for their disease, caring for their symptoms, caring for their reduced hemoglobin and reduced platelets, our symptom management, they have psychological needs, they have functional needs, they have needs like family support.  

So, these are all the things that patient navigators can help patients set that up based on their – we have patients who travel from out of state, are from two or three hours away. So, these patient navigators look into what resources they should have available locally. Sometimes, patient navigators help us – some patients cannot do frequent travels back and forth, so we get them connected to local oncologists, also. So, patient navigators look into those appointments, look into those offices, so they provide a lot of help to us manage our patients. So, they provide more of a holistic management, rather than just treatment of CLL. 

Katherine:

Let’s answer a few audience questions that we received in advance of the webinar. This one is from William. Can you please talk about common side effects of CLL – which, of course, we’ve covered already, but both the ones from the disease itself and then ones related to treatment, and what can be done about these? 

Dr. Bhat:

So, disease-related side effects, or we call them disease-related symptoms, include fatigue as a common symptom. Unintentional weight loss can happen. Fevers, chills, or drenching night sweats can happen. We call them, “B symptoms.” Spleen can enlarge, and the enlargement can cause belly pain or feeling of fullness quickly after a meal since spleen is close to our stomach, and as it enlarges, it limits the space stomach can take up in the belly. Lymph nodes can enlarge and can get uncomfortable. So, if any of these symptoms happen, then we have to treat the CLL, and once we start treating the CLL these symptoms should go away. 

As far as treatment-related side effects are concerned, for example, BTK inhibitors are associated with a certain set of side effects. For example, patients can have muscle cramping, muscle pain, joint pain. Patients can have diarrhea. Some of the side effects that we worry about is change in heart rhythm, for example, atrial fibrillation. We talked about that, or increased risk of bleeding.  

Those are some of the side effects we worry about, and if those were to develop, then, of course – for example, a patient has atrial fibrillation, and if it’s symptomatic, we hold the medication. We take care of the atrial fibrillation, usually in collaboration with cardiologists, and once that’s under control, then we have to decide what to do with the treatment. If the atrial fibrillation is under control, we can re-initiate the treatment, or we can go to one of the next-generation BTK inhibitors – the acalabrutinib, the pirtobrutinib, which have less of those side effects. 

Bleeding tends to be a concern, but anything that reduces the risk of bleeding like other medications, aspirin, clopidogrel (Plavix), other blood thinners, we can avoid them, monitor these patients very closely for any of these side effects, so that’s critical. With venetoclax, it’s usually very well-controlled. It’s the initial part of treatment that tends to be a little bit intensive because of the specific side effect called, “tumor lysis syndrome,” which means that the drug works very quickly, and cells die off quickly, they can release stuff in the blood, and things can collect in the blood. 

Uric acid can go up, electrolytes can be up, any number can go up. So, we are aware of this side effect, and we actually pre-emptively have things in place that can prevent this from happening, or if it happens, we manage it right away. For example, venetoclax has a specific dose initiation. For example, it’s called, “dose ramp-up.” We start it at a lower dose, 20 milligrams, for one week. Escalate it to 50 the next week, 100 the third week, 200 fourth week, and 400 the last week, which is the standard dose. They continue on 400 from there onward. 

And even with the slow dose escalation, in the early couple of weeks, we monitor them very closely. Once we initiate a dose, we bring them back to the clinic to recheck their blood work to see if there are any changes. If any changes have happened, we hydrate them, initiate medication for their tumor lysis syndrome. 

If the risk of tumor lysis is very high, then we monitor then admit them to the hospital. Otherwise, long-term side effects of venetoclax, what we have noticed mostly is gastritis, most side effects – mostly diarrhea. But that’s usually well-controlled. We can manage it well with supportive care. 

Katherine:

Here’s another question from Anna. She asks, “What is MRD, and does that mean that the disease is cured?” 

Dr. Bhat:

So, MRD is minimal residual disease, and in CLL is defined as the number of leukemic cells that can be detected in the blood or bone marrow following treatment, meaning how many cancer cells are remaining after treatment? This can be checked by a couple of tests. Most commonly, we use flow cytometry. Undetectable MRD is currently defined as the presence of less than one cell – one CLL cell in 10,000 white cells. 

It’s emerging as an endpoint in a number of clinical trials, and presence of no MRD, also called, “MRD-negative status,” although not considered a cure, predicts better outcomes with longer remission. This is being done in combination treatment, and although it’s part of clinical trials currently, with more data available, we may start using this in clinical practice in the next coming years. 

Katherine:

Sophia wants to know, “Are there any clinical trials regarding Richter’s, or DLBCL, transformation?” 

Dr. Bhat:

So, Richter’s transformation means when CLL, which is a low-grade disease, changes into high-grade lymphoma, and most commonly it’s “diffuse large B-cell lymphoma,” or DLBCL. Currently available treatments for Richter’s transformation are, unfortunately, sub-optimal. So, clinical trials to find better treatments are critical for this division, and there are a number of these currently going on. For example, some trials add targeted agents to the backbone of standard chemotherapy called, “R-CHOP.” 

So, we have one trial where acalabrutinib is being added. There’s another clinical trail where venetoclax is being combined with R-CHOP. One of the problems with Richter’s Transformation is that it tends to be refractory to treatment, and it tends to come back or relapse. So, there are studies ongoing for relapse treatment as well, with combination of targeted agents. And CAR-T therapy, we just talked about that, is also being studied in Richter’s Transformation. So, there’s a lot going on to improve the outcome for this. 

Katherine:

Okay, that’s great. Here’s one from Phil, “How do mutations affect longevity when surviving CLL? What new treatments help with P53 mutation?” 

Dr. Bhat:

So, there are certain prognostic markers for CLL, meaning certain tests that can tell us how a particular patient is expected to do. Some of these tests detect presence or absence of mutations in certain genes. For example, the IGHV gene can be mutated or unmutated. 

In patients with mutated IGHV, they do well, and patients with unmutated IGHV tend to have a more aggressive disease and may require treatment sooner. Similarly, TP53 mutations also tend to require treatment sooner, and more of these mutations do not respond well to conventional chemotherapy. However, targeted therapy has changed the outlook for these mutations, and it works very well for both these mutations. 

Katherine:

Finally, our last question. One audience member would like to know more about how CLL affects the immune system, including wound healing, and how does CLL impact this? 

Dr. Bhat:

So, patients with CLL usually have a weaker immune system. The lymphocyte, which is the white cell, which is affected in CLL, is an important part for an immune system, and due to the presence of disease, these lymphocytes – although there are lots of them in patients with CLL, they tend to be non-functional. 

“Functionally incompetent,” that’s what they’re called. And it leaves the patient’s immune deficient and susceptible to a variety of infections. Also, the lymphocyte is component – the B lymphocyte is one component of immune system. There are other components like T lymphocyte, antibody, MK cell. There’s cross-dock between the B cells and what we call, the “microenvironment,” which is made of the T cells. This cross-dock is deficient in patients with CLL, again making them immune-deficient and susceptible to infection. So, that’s one impact on their immune system. 

Sometimes, there’s something else happening in the immune system where the immune system can go crazy, or wacky, and start attacking the patient’s own blood cells leading to, for example, decrease of hemoglobin or platelets, because these are immune complications. And also, due to a weak immune system, patients with CLL can have delayed wound healing, which also predisposes them to infection. 

So, being aware of these complications is important and using appropriate precautions can be very helpful. Again, because they have a weakened immune system, vaccines are very important. Using all measures to avoid infection, hand washing, staying away from patients, from people who are obviously sick, is very important. Sometimes, patients where we see they’re’ getting frequent infections, we can use what’s called, “IVIG,” intravenous immunoglobulin. These are pre-farmed antibodies which are injected into or infused into the patient at regular intervals before the sixth week, which reduce the chance of these infections. 

Katherine:

Thank you, Dr. Bhat, for all the information. And please continue to send in your questions to question@powerfulpatients.org, and we’ll work to get them answered on future programs. Dr. Bhat, as we close out our conversation, I’d like to get your thoughts on where we stand with CLL progress. Can patients truly thrive with CLL? 

Dr. Bhat:

So, we have made strides in CLL treatment in the past 10 years that really changed the lives of our patients. These treatments work extremely well, and the side effects are gentler than what we used to see with conventional chemotherapy. And it’ll continue to get better with ongoing research, so I will tell our patients to focus on their lives. We know that they have this disease, but we know how to control it well. So, live your life. Enjoy. Be assured that we have all the tools available for you so that you can thrive. 

Katherine:

Yeah. It seems like there’s a lot of hope in the field. Thank you so much for joining us today, Dr. Bhat. It’s been a pleasure. 

Dr. Bhat:

Thank you so much for having me. 

Katherine:

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

What Should Patients Know About DLBCL Treatment and Research?

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

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

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

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See More From The Pro-Active DLBCL Patient Toolkit

Related Programs:

An Overview of Current DLBCL Treatment Approaches

An Overview of Current DLBCL Treatment Approaches

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

DLBCL Treatment Approaches What You Need to Know Resource Guide


Transcript:

Katherine:

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

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

Dr. Maddocks:

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

Katherine:

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

Dr. Maddocks:

Thank you for having me.

Katherine:

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

Dr. Maddocks:

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

Katherine:

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

Dr. Maddocks:

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

Katherine:

How do you empower patients?

Dr. Maddocks:

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

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

Katherine:

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

Dr. Maddocks:

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

Katherine:

Do we know what causes DLBCL?

Dr. Maddocks:

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

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

Katherine:

What are the symptoms?

Dr. Maddocks:

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

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

Katherine:

Are there different types of DLBCL?

Dr. Maddocks:

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

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

Katherine:

They’re under this umbrella of DLBCL.

Dr. Maddocks:

Yeah. Yeah.

Katherine:

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

Dr. Maddocks:

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

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

Katherine:

How does DLBCL progress?

Dr. Maddocks:

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

Katherine:

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

Dr. Maddocks:

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

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

Katherine:

Yeah. What are the different types of treatments available?

Dr. Maddocks:

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

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

Katherine:

Can you get specific about some of the treatment classes?

Dr. Maddocks:

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

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

Katherine:

What about stem cell therapy? Is that used?

Dr. Maddocks:

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

Katherine:

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

Dr. Maddocks:

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

Katherine:

Is a cure possible?

Dr. Maddocks:

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

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

Katherine:

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

Dr. Maddocks:

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

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

Katherine:

Okay. All right. Any other side effects?

Dr. Maddocks:

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

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

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

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

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

Katherine:

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

Dr. Maddocks:

Mm-hmm.

Katherine:

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

Dr. Maddocks:

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

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

Katherine:

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

Dr. Maddocks:

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

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

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

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

Katherine:

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

Dr. Maddocks:

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

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

Katherine:

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

Dr. Maddocks:

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

Katherine:

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

Dr. Maddocks:

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

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

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

Katherine:

Right. Combination approaches?

Dr. Maddocks:

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

Katherine:

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

Dr. Maddocks:

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

Katherine:

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

Dr. Maddocks:

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

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

Katherine:

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

Dr. Maddocks:

Not at all. So, I always encourage patients that they should get a second opinion, third opinion, whatever they need. 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:

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

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

Katherine:

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

Dr. Maddocks:

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

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

Katherine:

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

Dr. Maddocks:

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

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

Katherine:

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

Dr. Maddocks:

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

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

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

Katherine:

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

Dr. Maddocks:

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

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

Katherine:

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

Dr. Maddocks:

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

Katherine:

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

What is YOUR Role in Choosing a CLL Treatment Approach?

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What Is YOUR Role in Choosing a CLL Treatment Approach? from Patient Empowerment Network on Vimeo.

Dr. Jean Koff shares her perspective on the role of patient when deciding on a CLL treatment approach and reviews key factors that should be considered.

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

See More from Thrive CLL

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What Do You Need to Know About CLL Treatment Side Effects?

What Do You Need to Know About CLL Treatment Side Effects?

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Transcript:

Katherine Banwell:

What is the patient’s role in deciding on a treatment plan? 

Dr. Jean Koff:

So, it’s very important that the patient be involved in deciding on a treatment plan. Especially in first-line. Because we have these two excellent classes of agents, the BTK inhibitors and the venetoclax- containing regimens. Both of them have been shown to have very good what we call efficacy CLL, meaning that they’re able to control the disease, patient’s symptoms largely at bay for long periods of time. You know, we’re talking an average of years that – that patients are on these therapies. And they each, like I said have different side effect profiles.  

And they’re given in slightly different ways. And so, right now we don’t have data from our clinical trials comparing a BTK inhibitor regimen to a venetoclax-containing regimen in CLL patients to tell us one is better than the other. And so, for that reason, a lot of the decision-making about which therapy is going to be better for you, or which therapy you would prefer, lies with the CLL patient rather than with the doctor. And the things that I ask my patients to consider, there are a couple different things. One is the side effect profile. So, patients may be more or less comfortable with certain  

side effects of one drug compared to another. Or there may be something in the patient’s medical history that puts them more at risk for a certain side effect than another. 

The other major player in this decision-making process is how these drugs are given. So, with ibrutinib (Imbruvica), the ibrutinib is given as a pill that you take once a day, and you take it indefinitely. Meaning you take that pill once a day for as long as it’s doing what it’s supposed to do, which is keeping your CLL under control, and as long as the patient is tolerating it well, meaning you’re not having a lot of uncomfortable side effects from the ibrutinib. So, I have patients who have been on ibrutinib for years and years and years and years.  

The venetoclax-containing regimen for patients who are getting their first-line treatment in CLL is different. It is designed as a – what we call time-limited therapy. And so, this regimen is given in – over about 12 months, 12 or 13 months, and then stopped, as long as the patient has had a good response. The other thing to consider with the venetoclax r egimen, it’s not just the pill. You do take a pill every day, but you also get a – an infusion for about six months of the monoclonal antibody. Meaning that you’ll have to come into the infusion center and get an infu – an IV infusion of this drug called obinutuzumab. The last consideration with the venetoclax regimen that differs in how it’s administered, is the venetoclax often works so well that it can break down the CLL cells a little bit too quickly. And so, for patients who have a very, very high white count, or large lymph nodes due to their CLL, there is a risk of something we call tumor lysis syndrome, which refers to the process where the tumor cells break down very, very quickly, and they produce molecules that are released into the bloodstream that can be dangerous if they get too high or too low. And so, sometimes, in some patients we have to monitor for the tumor lysis syndrome by checking labs fairly frequently after we start the venetoclax. And for some patients that means they have to stay overnight for a night or two in the hospital for lab monitoring.  

So, for some of my patients that I talk to about venetoclax, they say I want to stay out of the hospital, I just want to take a pill, I’m fine taking a pill, I’ll go with the BTK inhibitors. For other patients, they say I don’t want to be on a pill every single day, I will go through this year of therapy, I’m comfortable with that, and I’m happy that I’ll be able to take a break from therapy after one year. So, that ends up being a large factor in many of the conversations I have with my patients about which therapeutic approach we’re going to use in front-line therapy.  

What Do You Need to Know About CLL Treatment Side Effects?

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What Do You Need to Know About CLL Treatment Side Effects? from Patient Empowerment Network on Vimeo.

CLL Expert Dr. Jean Koff discusses common side effects of CLL treatment and explains how they can be managed.

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

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Transcript:

Katherine Banwell:

What are the common side effects of treatments, and how are they managed? 

Dr. Jean Koff:

So, each of the different classes of agents has a different profile of side effects. The BTK inhibitors, the first class that I mentioned with ibrutinib (Imbruvica) and acalabrutinib (Calquence), are usually very well tolerated. The most common side effects that we tend to see are things that the patients can feel or see, but also things that we can see on the labs when we’re monitoring patients. So, sometimes you can see a lower platelet counts or lower blood cell counts with ibrutinib. That’s something that you may not notice, but your doctor’s going to notice on the – the blood counts when you come to the office. Sometimes ibrutinib can cause a rash or GI upset, this is usually easily managed with supportive care from your physician.  

And then some more – some more common effects of the BTK inhibitors include joint pain and headache. And again, many physicians, because we’ve been using BTK inhibitors for a long time, have a good regimen for treating these side effects. More uncommon side effects of BTK inhibitors, particularly ibrutinib that we look out for would be abnormal heart rhythms and some tendency for bleeding. But these are relatively uncommon and with newer BTK inhibitors, we’re seeing lower rates of these side effects.  

Dr. Jean Koff:

So, in terms of venetoclax side effects we have a little bit of a different profile. This agent is much more likely to cause lower cell counts, especially in a white blood cell count known as neutrophil count, and so your doctor will be monitoring you for that. In terms of patient side effects that you can feel, it can cause a rash, it can cause some GI upset. These are usually relatively easily managed but we want you as the patient if you’re on venetoclax to talk to your doctor about these side effects so that they can help you feel better and help you manage those. In terms of the anti-CV20 monoclonal antibodies, which we use a couple in CLL more frequently, they have very similar side effect profiles.  

So, one is rituximab, and one is obinutuzumab. Obinutuzumab is usually used in combination with venetoclax in front-line CLL.  

Like I mentioned before, this is an infusion and most of the side effects that we think about and most commonly see in these anti-CV20s are side effects that patients have during the infusion. And these are referred to as infusion reaction. And these are relatively common, around 30 percent in these anti-CV20 monoclonal antibodies. So, what is an infusion center react – er sorry, what does an infusion reaction look like? This looks sort of like an allergic reaction. 

Katherine Banwell:

Hm. 

Dr. Jean Koff:

So, your nurses in the infusion center are going to be monitoring you very carefully once you start the infusion, and they’re going to start it at a low dose, very slowly. But the side effects they’re monitoring for, they’re looking for changes in your heart rate or blood pressure. You may start to feel hot or cold or sweaty, you may have chills. Sometimes patients can have swelling in their throat or their tongue. And what will happen is because these are fairly common, is we’re still able to give the anti-CV20, but what we do is the nurse will stop the infusion, they may give you some medications that calm down that infusion reaction. So, medications like antihistamines –  

Katherine Banwell:

Mm-hmm.  

Dr. Jean Koff:

Or steroids that help tamp down that immune response, and then they start the anti-CV20 infusion at a lower rate. The vast majority of patients will be able to receive an anti-CV20 antibody even if they have an infusion reaction. They may just need a little bit more of those immune tamping-down medications like antihistamines and steroids. And then the last thing to consider, which I think we’ve mentioned, especially in the venetoclax-containing regimens, is the tumor lysis syndrome. And so, that is a side effect like we mentioned is kind of like the venetoclax working really, really, really well, of the tumor breaking down too quickly.  

And so, patients who have tumor lysis, if they’re at high-risk, hopefully they’re already being monitored very closely with frequent lab draws, and they may receive medications that – that diminish the risk of adverse events happening because your electrolytes are out balance, for instance, your potassium is too high, or your calcium is too low. Because your doctors are monitoring you closely, they can give you medications that can help balance  out those – those electrolytes and help protect the kidneys. The tumor lysis is typically not a risk after the initial doses of venetoclax.  

So, the first couple weeks is when we typically monitor that, and then once the CLL has been broken down, or as I like to say, once it’s been cooled off a little bit, then you no longer have this risk of tumor lysis and it – it doesn’t require further monitoring. 

Katherine Banwell:

That’s great information, thank you.  

Collaborating on Lung Cancer Treatment Decisions With Your Team

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Collaborating on Lung Cancer Treatment Decisions With Your Team from Patient Empowerment Network on Vimeo.

Lung cancer specialist Dr. Tejas Patil discusses why active communication between patients and their healthcare team is essential when making care and treatment decisions.

Dr. Tejas Patil is an academic thoracic oncologist at the University of Colorado Cancer Center focused on targeted therapies and novel biomarkers in lung cancer. Learn more about Dr. Patil, here.

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Transcript:

Katherine:

Where does shared decision-making come into play? When does it come into play?  

Dr. Patil:

It comes in always.   

So, shared decision-making is one of the most important things that patients can do with their providers. It’s really important when we think about treatments to not just be very cookie cutter and follow a recipe book for managing a patient’s lung cancer. It’s really important to individualize therapy. This is really important where patients’ values come in. What patients want to do with the time that they have, and what patients want to do with the treatment? How do they want to take certain treatments?  

So, for example, I have a patient who’s a violinist and was faced with the possibility of receiving a type of clinical trial, but this trial caused neuropathy or numbness or tingling and would essentially render this patient unable to play the violin. This was an unacceptable treatment option for this patient, even though the data would suggest that it would work.  

And that’s an example of where shared decision-making comes in because it’s more than just treating numbers. It’s really about taking care of people. 

Katherine:

Yeah. Why is active communication between the patient and lung cancer team so important? 

Dr. Patil:

Active communication is really important because it’s really one of the easiest ways for things — So, a breakdown of communication rather is a one of the easiest ways for gaps to occur in care. And when there is active communication, when a patient feels like they have an opportunity to reach their team members to connect with their providers, it builds trust. And I think trust is one of the more important elements in the management of patients. If patients can trust their provider and trust that their judgment is sound, then there is more likely to be a harmonious relationship that facilitates the shared decision-making.  

Katherine:

When a patient is in active lung cancer treatment, how are they monitored? 

Dr. Patil:

So, patients are monitored in a variety of ways. If they’re receiving chemotherapy or immunotherapy, typically a provider will see the patient with each infusion cycle. And so, depending on the length of time and the schedule of infusions, that sort of dictates how frequently we see our patients. When patients are receiving targeted therapies, specifically the pill-based forms, they can be monitored in concordance with the NCCN guidelines. And in my practice, I typically see patients every three months with imaging.  

Now, if patients are having a hard time tolerating treatment, so they’re taking their oral pills but for whatever reason, we’re having a ton of side effects, we’re trying to figure out the dose. I might see my patients more frequently. But as a standard, if patients are tolerating their targeted treatment well, their scans look good, I usually see them every three months.  

Expert Advice for Setting Lung Cancer Treatment Goals

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Expert Advice for Setting Lung Cancer Treatment Goals from Patient Empowerment Network on Vimeo.

Dr. Tejas Patil, a lung cancer specialist from the University of Colorado Cancer Center, shares advice on how lung cancer patients can work with their healthcare teams to set treatment goals.

Dr. Tejas Patil is an academic thoracic oncologist at the University of Colorado Cancer Center focused on targeted therapies and novel biomarkers in lung cancer. Learn more about Dr. Patil, here.

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Related Resources:

Expert Advice for Recently Diagnosed Lung Cancer Patients

Collaborating on Lung Cancer Treatment Decisions With Your Team

When to Consider a Clinical Trial for Lung Cancer Treatment?


Transcript:

Katherine:

When someone is considering therapy for non-small cell lung cancer, what advice do you have for setting treatment goals with their team? 

Dr. Patil:

So, non-small cell lung cancer has seen some remarkable progress in the last 20 years, but it’s still a very serious disease. One of the main expectations I set with patients is that I will guide them through this journey, but that there’s going to be a lot of changes in their day-to-day. When we look at someone who’s receiving targeted therapy, in general I upfront tell patients that the model that I’m trying to emulate with targeted therapies is very similar to HIV. I remind patients that in 2022, we still cannot cure HIV, but we can give a very effective antiviral therapies that put their viral count to zero.  

And patients with HIV now can live really full rich lives. And that’s the model that we’re trying to replicate with targeted therapies. With immunotherapies, I set patients the expectation that immunotherapy has been a major advance in the management of lung cancer. And many patients are living very full lives as a result of using immune therapies. But it’s not for everyone, and I do enforce and or rather emphasize is a better word, the concept of taking things day-by-day. I think it’s really helpful when patients have a diagnosis like this to not spiral out of control and think about all possible future outcomes, but to really work with the data that we have at the moment.