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DLBCL Treatment Approaches: What You Need to Know Resource Guide

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Factors That Affect Waldenström Macroglobulinemia Treatment Decisions

Factors That Affect Waldenström Macroglobulinemia Treatment Decisions from Patient Empowerment Network on Vimeo.

Many factors come into play when making treatment decisions for Waldenström macroglobulinemia (WM) patients. Dr. Jorge Castillo reviews key decision-making factors and explains how genomic profiling results may affect WM care.

Dr. Jorge Castillo is Clinical Director at the Bing Center for Waldenström Macroglobulinemia Dana-Farber Cancer Institute and Assistant Professor of Medicine at Harvard Medical School. Learn more about Dr. Castillo, here.

See More From The Pro-Active Waldenström Macroglobulinemia Patient Toolkit

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Why Patients Should Speak Up About WM Symptoms and Side Effects


Transcript:

Katherine:                  

Dr. Castillo, many factors coming into play, obviously, when making a treatment decision. How do you decide which treatment is appropriate for a particular patient?

Dr. Castillo:               

Yeah, that’s a million-dollar question. And the reason that is the case is because when we think about other types of cancers, right, breast cancer and lung cancer, we do have these large studies with thousands of patients in which half of the group got one treatment; the other half got the other treatment. And we know that one treatment is better than other in this context of a randomized, large study. We don’t have a lot of that in Waldenstrom’s because it’s a rare disease. So, most of the studies that we do have are studies in which we have maybe 30, 40, 50 patients, 100 if we’re lucky, so comparisons between all these different treatments have not been done.

So, the chemotherapy, for example, versus the PI, there’s no study comparing that. The chemotherapy versus the BTK inhibitors, there’s no study comparing that. So, based on that, since there’s no comparison, we need to kind of understand the profile of the drug, you know. And you need to match that with the patient’s preferences.

So, we need to look at the patient’s age. We need to look at the patient’s comorbidities. We need to look at the patient’s medications that they’re on. Are their insurance going to cover the pills or not? Are they comfortable with getting intravenous infusions? What is the risk of leukemia versus the risk of neuropathy in those patients? So, we need to look at so many

factors. Interestingly enough, efficacy is not the problem. We don’t choose treatments based on efficacy because all of the treatments are almost equally effective. We actually choose treatments based on patients’ preferences. We choose treatment based on the medication side effects.

And the newer thing is actually, we’re doing genomic profile in the patients. We’re actually seeing which mutations the patients have, and there are some treatments that work better or worse with specific mutations, so we kind of tailor a treatment option based on all those factors.

So, it’s not an easy job, but I think it’s rewarding to understand that the best treatment for a patient with Waldenstrom’s is a personalized treatment. And as long as –

Katherine:                  

That’s what it sounds like.

Dr. Castillo:               

And as long as the patient understands the best he or she can in terms of the pros and cons of the treatment before going in, an educated decision, I think that’s probably best choice, yeah.

Katherine:                  

Are there test results that can impact options?

Dr. Castillo:               

I would say so. So, for example, in patients who have very high IgM levels, we try to avoid giving rituximab alone, for example, because rituximab can also make the IgM go up in about 40 to 50 percent of the cases, and patients can become more symptomatic if they were symptomatic because of the IgM in the first place.

So, that’s one value that we follow carefully. Sometimes, the kidney function can tell us if there are some chemotherapies that cannot be given with a kidney function that is not normal or close to normal, for example. And again, there are some mutations that can help us understand if a treatment might work better than other treatments too.

So, yeah, there’s a lot of shades of gray in there to be able to pick and choose. And again, the patient’s symptoms are important. I mean, if a patient, for example, already has an arrhythmia, I’m going to try to avoid a medication that can cause more arrhythmias. If a patient has already some nerve damage, I’m less likely to recommend a treatment that can cause more nerve damage. So, yeah, there’s a lot of room there for personalization.

Katherine:                  

Yeah. You’ve mentioned existing conditions. So, how do patients’ specific factors like lifestyle and age and other preexisting conditions impact treatment choices?

Dr. Castillo:   

Well, I think the way that affects it is just because patients who are older age tend to have other problems, you know. And I think having that in mind is important. So, if somebody has a liver dysfunction of some kind, then that will modify my treatment options. And as I said earlier, if someone has a kidney disfunction of some kind or depending on the degree, I can choose a different type of treatment there.

Now, also, we need to be mindful, for example, if somebody’s not so reliable on taking pills because they cannot remember or they don’t know, they are not organized enough or they don’t – you know. So, there are so many other factors playing into that role – maybe a pill form treatment might not be the best option, you know.

If somebody doesn’t have help to transfer him to take him to the infusion room back and forth, maybe an infusion treatment might not be the best there. So, again, another series of factors could be taken into account when making treatment decisions.

Current Waldenström Macroglobulinemia Treatment Approaches

Current Waldenström Macroglobulinemia Treatment Approaches from Patient Empowerment Network on Vimeo.

Which Waldenström macroglobulinemia (WM) treatment is right for you? Dr. Jorge Castillo discusses available WM treatment approaches and their side effects.

Dr. Jorge Castillo is Clinical Director at the Bing Center for Waldenström Macroglobulinemia Dana-Farber Cancer Institute and Assistant Professor of Medicine at Harvard Medical School. Learn more about Dr. Castillo, here.

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Why Patients Should Speak Up About WM Symptoms and Side Effects


Transcript:

Katherine:                  

Can you walk us through the currently available treatment approaches for WM?

Dr. Castillo:               

Oh, there’s plenty. And that is actually a good message. So, there are many treatment options, and the treatment options are almost equally effective. So, I think we can separate the treatment options in big groups. I think that the big group, the first group that we use, treatments that are very effective, is chemotherapy-based. And we have a number of chemotherapy options that we use routinely for patients with Waldenstrom’s. We typically combine chemotherapy with an antibody called rituximab. And that rituximab is used universally for a lot of different blood cancers out there.

And so, when we combine the chemotherapy with the rituximab, I would say probably 90 to 95 percent of patients that get treated do feel better. Not only their numbers improve, but also the symptoms improve, the treatments. These treatments are typically given intravenously, and they are typically given for about six months of treatments. It’s very easy to tolerate.

I mean, it’s not the classic chemotherapy that we think about with other cancers, right? Losing your hair and vomiting and being very sick. That is not what happens with these chemos. They are very gentle chemos. But the fact that they are gentle doesn’t mean that they do not work. I mean, they are very effective against the disease, but they are more gentle in terms of the side effects. Some other side effects that I think are important with chemo specifically is the small risk of developing another bone marrow disease, and that’s because of how chemo works. It also damages a little bit the good cells, and that can cause other problems, and the risk of infections.

I think nowadays, in the context of the pandemic, I think the risk of infections is something that we need to really talk about a lot with our patients. But these typically are six-month treatments, intravenous treatments, and then done with treatments and very effective regimens. Then, we have the non-chemo treatments, which is you have a lot of those, development of those therapies over the years.

We do have a group of medications called proteasome inhibitors, or PIs. And we borrow those from the myeloma group.

Myeloma is another blood cancer that shares some similarities with Waldenstrom’s, so we use some of those treatments into our treatments. And these are non-chemotherapy agents. We also combine them with rituximab to make them more powerful.

And some of them are intravenous. Some of them are injected under the skin. Some of them are pills. And again, six months of treatments, very nicely tolerated, very effective. I’m talking about 90, 95 percent efficacy rate. And the side effects with this are more like nerve ending damage or more like lung, heart problems, not really secondary malignancies, but infections is also an issue here too.

And then, we have the most – the newer treatments that are the pill form treatment. We call them BTK inhibitors, B as in Boy, T as in Tom, K, BTK inhibitors.

We use that for many other diseases as well, but we use them for Waldenstrom’s too. And we use them alone in most scenarios. Sometimes, we can combine them with rituximab, but the large experience is without rituximab. So, it’s just the pill. Nothing else. No injections or infusions. No risk of secondary bone marrow disease. No risk of neuropathy. But they are pills that you have to take every day, indefinitely.

So, in contrast with the other six-month treatments, duration treatments, these are treatments that tend to last for several years. And we do have some taking these pills sometimes for six, seven, eight years, and they continue on them because they do well, and their response is as good as chemotherapy. But it’s just with a pill that you need to take every day.

Now, these pills have a different set of side effects, and that includes sometimes some irregular heartbeats, some bleeding and bruising. We have a new pill just that we published on recently, a medication called venetoclax, with a V. Again, it’s a different mechanism of action. It’s a BCL-2 inhibitor. It doesn’t have any risk of arrhythmia or bleeding, but it can cause some issues with infections.

But maybe you can take two years of this treatment and not take it indefinitely. So, all these are treatments that we keep advancing, and we will continue running studies with new medications that hopefully have similar or higher efficacy with a better side effect profile.

Now, just to finalize, the last option that should always be in the mind of a patient is clinical trials, investigational agents that are not sometimes – some of them are approved already by the FDA.

Sometimes they’re not. But they are agents that either in the laboratory or in prior experience suggest that they might have efficacy on these patients.

And that’s another treatment option that could be considered in some scenarios.

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

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

What steps can you take to engage in your diffuse large b-cell lymphoma (DLBCL) treatment and care decisions? Expert Dr. Jason Westin discusses current and emerging DLBCL therapies, reviews key treatment decision-making factors, and shares advice for partnering with your healthcare team.

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

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Transcript:

Katherine:

Hello, and welcome. I’m Katherine Banwell, your host for today’s program. Today, we’re going to explore the goals of DLBCL treatment and discuss how you can play an active role in making care decisions.

Before we get into the discussion, please remember that this program is not a substitute for seeking medical advice. Please refer to your healthcare team about what might be best for you.

Joining us today is Dr. Jason Westin. Dr. Westin, welcome. Would you please introduce yourself? Okay.

Dr. Westin:                 

Of course. Happy to be here. Thank you for inviting me. My name’s Jason Westin. I am the Director of Lymphoma Clinical Research and the Section Chief for Aggressive Lymphomas at MD Anderson Cancer Center of Houston, Texas.

Katherine:                  

Excellent. Thank you so much for taking time to join us today. Today, we’re going to be learning about DLBCL treatment goals and how patients can be active members of their team. So, let’s start by understanding who is typically on a patient’s DLBCL healthcare team.

Dr. Westin:                 

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

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

Katherine:                  

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

Dr. Westin:                 

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

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

Katherine:                  

What role do caregivers take?

Dr. Westin:                 

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

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

Katherine:                  

Right. Before we move on to discuss the types of treatment, what are the goals of DLBCL treatment and how do they vary by patient.

Dr. Westin:                 

It’s a very important question to define at the outset what are we trying to accomplish when we’re talking about different treatments that we could recommend. DLBCL is a curable disease but, unfortunately, we don’t cure as many patients as we’d like. The majority of patients are cured but we always want to try and do better. But at the outset, we define our goals. And if somebody’s newly diagnosed, the goals of treatments is to try and go for a cure. That’s the end of that sentence when I am talking to my patient, that we are going for a cure, period. And then, we describe how we get there.

If somebody has relapsed or refractory disease, if the first treatments don’t work, usually we’re still trying to go for a cure, but there are some contexts where a curative treatment may be too toxic, the treatment itself may be a bad idea, just because of the potential of toxicities to be too much for a patient to tolerate.

So, there are situations, if the patients had a cancer that’s not gone away with the standard approach, sometimes we’re still going for a cure. Sometimes that may be difficult to achieve and we’d be going for a palliative treatment to try and prolong the patient’s quality of life and to try and give the patient more good days without harming them with treatments. But by and large, when we’re talking about the category or large B-cell lymphoma, the intention of treatment is to go for a cure.

Katherine:                  

How can patients make sure they understand their goals of treatment?

Dr. Westin:                 

It’s important to ask physicians, and PAs, and nurses at the outset about the goals of treatment. Sometimes we move quickly from diagnosis to treatment and don’t necessarily take a moment to talk about, “What are we trying to accomplish with this treatment?” We just see a fire and we’re trying to put it out. And the patient’s excited to get started after the scare of a diagnosis.

But I do think clarifying, “Can we talk a little bit about what the goal of this treatment is” – because sometimes there can be a mismatch between what a patient might expect a goal is and a physician, or a PA, or a nurse might expect a goal is. And if we’re not clarifying that and on the same page about that, sometimes there could be conflicts or confusion as we go into the treatments.

Katherine:                  

All right. I think we have a good understanding of treatment goals. So, when is it time to treat DLBCL?

Dr. Westin:                 

DLBCL is not a cancer that we wait to treat. This is a cancer that needs treatment very quickly after diagnosis. If a patient were not treated, the cancer would progress very rapidly. Some DLBCL’s progress faster than others but we would expect that if treatments were not administered, if we lived a century ago when treatments didn’t really exist, people would live, at the most, a few months with this cancer. This is a rapidly growing cancer that would result in death if we didn’t take care of it.

So, the time to initiate treatment is basically after a biopsy is obtained, the pathologist says, “This is large B-cell lymphoma,” a meeting with and oncologist occurs that says we got to start a treatment. Than then, ASAP after that to get going. What we know from DLBCL patients in the past is those that require treatment sooner – meaning you get a biopsy on a Monday and by Friday night you’re sick and you need treatment now or else – that tends to go along with a more aggressive version of DLBCL and perhaps can be associated with worse outcomes.

Patients who get a biopsy and four weeks later then they’re in the oncologist’s office talking about, “Maybe we should start a treatment,” but no symptoms, no problems, that usually goes along with a better prognosis. The so-called diagnosis to treatment interval can be actually powerfully prognostic.

Katherine:                  

So, once it’s time to treat, then of course it’s time to think about treatment options. So, let’s walk through the types of therapy that are used today in DLBCL treatment. First of all, let’s talk about chemotherapy.

Dr. Westin:                 

Yeah. So, unfortunately, chemotherapy is still the – cornered the realm when it comes to DLBCL therapy, especially in the frontline setting. So, if a patient is newly diagnosed, no prior history of DLBCL, biopsy comes back and describes that’s what we’re looking at, the standard treatment, which has been around for about 40-plus years, is a combination of chemotherapy called CHOP, each letter representing a different medication. The antibody immunotherapy Rituxan, or rituximab, was added about 20 years ago.

So, the standard treatment for the past 20 years has been R-CHOP. And this has been tried and true. It’s been tested many, many times to try and improve this or to beat this. And R-CHOP has been less toxic than other alternatives or as good as other alternatives through many, many, many trials.

Now, late last year, in 2021, there was finally a randomized Phase III trial that showed, in addition of a targeted therapy in place of one of the chemotherapy drugs, had a slightly better progression free survival at two years. The targeted therapy here is a drug called polatuzumab. Polatuzumab is an FDA-approved therapy for large B-cell lymphoma patients in the US. Currently, as of the time we’re taping this, it’s approved for patients with relapsed disease. It’s not yet approved, based on this Phase III trial, but that may change in the coming months.

The improvement was modest. Around six percent of patients differing in terms of those who had progressed versus those who had not progressed in two years. So, not an earthquake, but R-CHOP or variations of R-CHOP are still a standard treatment for patients, outside of a clinical trial, of newly diagnosed diffuse large B-cell lymphoma.

Katherine:                  

And what about CAR T-cell therapy?

Dr. Westin:                 

The other treatment classes, the targeted therapies include CAR T-cell, or other antibody drug conjugates, immunotherapies, bispecific [antibodies] – there is a lot going on in new drugs and new drug development for DLBCL.

As of today, most of those therapies that are approved are looked at in patients that have already had a frontline chemotherapy approach and the cancer has come back. So, those are approved. But they’re either approved for patients in second line therapy – after having had one line, cancer comes back and now we’re in second line – or in third line therapy, two previous treatments and now we’re in third line treatment. There’s a lot of clinical trials, and I think we’ll talk maybe about clinical trials in a bit, that are exploring use of these targeted therapies, including CAR T-cells, including bispecific antibodies, including other targeted therapies as a potential for a frontline treatment.

But outside of a clinical trial, R-CHOP or versions of R-CHOP are still the standard today.

Katherine:                  

And what about stem cell transplant?

Dr. Westin:                 

Stem cell transplant’s been a second line therapy option, and it’s been the standard second line therapy for about 25 years. We’ll see this change in the coming years. There have recently been three randomized clinical trials comparing stem cell transplant versus CAR T-cell. All three of those reported out some information in late 2021, with two of them having final results, one of them having an interim report. And one of the final reports, one the interim reports, showed a significant improvement in chance of staying in remission in all the outcomes that were measured for CAR T-cell beating stem cell transplant.

So, we’re waiting to see how the health authorities view these clinical trials, if CAR T-cell potentially moves into second line treatment for a majority of patients instead of stem cell transplant. So, stem cell transplant’s been there, it’s tried and true. It has cured a significant portion of patients. However, CAR T-cells potentially are better and may be moving in the second line within the next year.

Katherine:                  

Okay. Good to know. You touched upon clinical trials. Where do they fit in?

Dr. Westin:                 

Yeah. In my view, clinical trials are our best weapon against cancer, period. I think that’s true across the board, even for cancers like DLBCL where the majority of patients are cured with their first treatment, like an R-CHOP type therapy. All of our treatments at some level came from a clinical trial. They didn’t just have treatments fall out of the cancer treatment tree. They all came from patients going on to clinical trials, trying to improve upon previous standards.

And as I mentioned, CHOP has been there for about 40 years. R-CHOP has been there for about 20 years. We don’t do a lot of things that we would consider risk of death that we trust a 40-year-old technology to try and save us from. We like the latest, we like the modern, we like what’s the shiny new object. And so, clinical trials are the way that we define new standards and move forward to do new therapies.

CAR T-cells are an incredible advance. Those didn’t exist a handful of years ago. They were only defined as successful in clinical trials. So, my advice to a patient who is diagnosed with DLBCL is ask your provider, as your physician, or your PA, or your nurse practitioner, “What clinical trials are available to me?” If the answer is, “We don’t have any,” go on the internet and figure out where you can go for a second opinion where clinical trials might be available. And there are plenty or resources online to try and figure this out.

Time is of the essence for this DLBCL. We don’t have six months to shop around and go figure out what centers, but clinical trials are really the only engine we have to drive progress to do better and cure more patients.

Katherine:                  

Yeah. You touched upon this earlier, Dr. Westin, but aren’t there emerging DLBCL approaches the patient should know about?

Dr. Westin:                 

Yes. Thankfully, there are many, many. We could spend several hours talking about lots of new therapies coming along. So, it’s a great answer to have. It’s an embarrassment of riches that we have for lots and lots of new therapies that appear quite promising in the early development stage.

In terms of those that have actually crossed over the finished line to be approved by the FDA, we have a handful of new therapies in the past few years that have been approved. Previously, we didn’t really have very many, but now there are multiple therapies that are approved by the FDA outside of a clinical trial, that are targeted treatments.

And those include antibody drug conjugates, basically an antibody like you make against an infection. However, this antibody has a chemotherapy warhead attached to the back of it. So, effectively, it’s a heatseeking missile that finds whatever target we want it to find – in this case, cancer cells – and delivers a high dose chemotherapy right to the bad guys, not to the good guys. There are also other immune therapies that we’ve seen than can be very powerful antibodies, plus immunomodulatory drugs. And we can talk about specific names of these if we’d like.

And then, lastly, there are other oral agents that are coming along that look very promising in terms of their ability to target the cancer cells more directly than growing cells.

Lastly, there’s a very new class of therapies not yet approved, but very promising. I mentioned this before. It’s something called a bispecific antibody. Bispecific – the word bicycle meaning two wheels. Bispecific is two specific antibodies. Basically, it’s an antibody that’s grabbing onto a cancer cell and grabbing onto an immune cell. “I’d like to introduce you guys. Why don’t you guys come in proximity and see if we can have a party.”

And it’s an idea here of trying to get the cancer cell to be attacked by the immune cell simply through this close proximity that occurs. Not yet approved. Looks very promising and I think probably will be approved for multiple different lymphoma types, including large B-cell, in the coming years.

Katherine:                  

Okay. That’s really good information. Related to clinical trials and research, we received a patient question before the program. Anthony wants to know, “If I participate in a clinical trial, will I receive a placebo?”

Dr. Westin:                 

Great question, Anthony. I get this question all the time. The short answer is no in the way that you’re meaning this question.

Is there a possibility that you won’t get an active treatment for your cancer? No. That’s unethical. That’s not something that would ever been done in a clinical trial when there’s indication that treatment is needed. The only time a placebo might be used is to try and check to see is something effective more than what we’ve done in the past. An example being if we wanted to check a new drug in combination with R-CHOP, comparing it to R-CHOP alone, sometimes patients might get R-CHOP with the new drug or R-CHOP with a placebo.

Not a placebo by itself, but basically as a balance so that everybody’s taking an extra pill on top of their regular therapy. Because the placebo effect is powerful. Patients who take the new therapy, got the new pill, “I feel better because I’m doing this new targeted treatment.” When, in reality, placebos do that, too. So, it does help to have a balance in terms of symptoms, in terms of effectiveness in adverse events, to have placebo-controlled trials.

However, patients don’t get only a placebo. They get standard treatment plus a placebo. So, the only context I can think of you’d do that would be in that situation or if we think you’re already potentially cured but we’re giving an extra therapy just to be double sure versus observing the current standard. You may get a placebo there. But if you have active lymphoma that needs treatment, you will never get a placebo as your single therapy. That would be unethical and unacceptable. That does not happen.

Katherine:                  

Okay. That’s really good to know. Thank you.  Now that we have a better understanding of the types of treatment, let’s talk about what goes into deciding on an approach. Since no two patients are exactly the same, I imagine then that their treatment approaches are different. So, what do you consider when determining the best treatment option for an individual patient?

Dr. Westin:                 

That’s a very important question. How can we personalize treatments in a way that gets us down to what a single patient needs, not both populations of thousands of patients, but the person sitting across the exam room.

Katherine:                  

Right.

Dr. Westin:                 

For first line DLBCL, someone who’s newly diagnosed, unfortunately the one size fits all of R-CHOP being the standard, or versions of R-CHOP, the new treatment that I mentioned having a slight improvement not yet approved by the FDA, there’s not as much customization or personalization outside of clinical trials as I would like. We’d love to be smarter and to be able to say, “Well, you have the subtype A of large B-cell, therefore you should get subtype therapy A,” or subtype B and you get subtype therapy B. We have more of a one-size-fits-all approach in our frontline treatment outside of clinical trials.

On clinical trials, sometimes patients will have a subtype of large B-cell. We talk about things called the cell of origin. We talk about things called double hit. There are specific subtypes of DLBCL that occasionally a clinical trial will target that subtype and have a therapy that’s supposed to work better in that subtype.

So, that’s another reason to consider clinical trials, is the ability to potentially to customize or personalize your therapy to go more specifically after what’s wrong with your cancer cells as opposed to having something that’s given as a shotgun approach to everyone. And the reason that R-CHOP is around for this long is that it works fairly well across the board in different subtypes. It’s not something that’s completely effective in one and completely ineffective in another.

But, in terms of personalizing therapies, clinical trials are an important thing to be considered. In the relapse space, with patients that have relapsed disease, there we have more potential to customize treatments and often that’s done based upon characteristics of the tumor or the patient’s preferences in terms of frequency of treatments, in terms of potential for side effects. There’s more that can be done if somebody’s already had a treatment and it came back. But clinical trials are a great way to try and customize, or to drill down in terms of specifics about your particular cancer.

Katherine:                  

Can you touch upon treatment side effects?

Dr. Westin:                 

Yes. Treatment side effects, obviously, are very important to our patients in terms of what does their quality of life look like while the therapy’s ongoing to try to get rid of this dread cancer. The side effects really depend upon what treatment we’re talking about. And if we focus on frontline treatments, the initial treatments being R-CHOP based treatments, side effects are chemotherapy side effects. And that includes low blood counts, white blood cells, red blood cells, platelets, risk of infection along with the low white blood cells, and risk of fevers prompting a trip to the emergency department for an evaluation.

Thankfully, that’s rare. Maybe one out of four or one out of five patients would have an infection during treatments. But if it happens, it can be serious. Fatigue, nausea – which is usually very well controlled with medications, but nonetheless has to be something we watch out for. And for many patients, it’s important to note that hair loss can occur from the chemotherapy. And that’s something that it’s easy to say, “Oh, I don’t care about that.” But for many people, when you look in the mirror and you see somebody else looking back at you, somebody that has a different physical appearance than you’re used to, it can be quite distressing.

That’s unfortunately part of many patients’ journey with the therapy for diffuse large B-cell lymphoma. In nonchemotherapy treatments – the targeted ones that I mentioned – these are the antibody drug conjugates, the targeted immune therapies, or in CAR T-cells, side effects can be very different, sometimes much less in terms of the side effects, other times completely different types of side effects. So, it really matters what type of treatment you’re talking about. And this is something you really want to clarify with your physician, with the nurse, with the PA.

“Tell me a lot of details about what I should expect when I’m feeling this. And give me reading materials so I can digest it, think about it, and figure out what questions I need to ask after we first discuss this.”

Katherine:                  

Yeah.

Dr. Westin:                 

The side effects really are an important part of the patient’s journey.

Katherine:                  

Yeah. We had another audience question prior to the program. “Where can I find a specialist?”

Dr. Westin:                 

Very important question. It depends where you live. Specialists are not on every oncology shop in the country.

Katherine:                  

No.

Dr. Westin:                 

Lymphomas are not the most rare cancer. They’re somewhere in the seven, eight, nine range every year in terms of annual incidents of cancers. But that’s lymphomas in general. Large B-cell lymphoma is the most common lymphoma, but it represents about 30,000 new diagnoses each year. Thirty thousand Americans are diagnosed with this disease each year. Thirty thousand sounds like a large number if you’re thinking about a sporting event, but if you’re thinking about compared to the entire US population, that’s a relatively small number.

So, I think that going to a relatively large cancer center, if that’s something that’s feasible for you – if you live in a driving distance or have the economic means to be seen at a cancer center, you’re very likely to find a physician that has expertise in DLBCL. I practice at MD Anderson, where basically most of my patients have DLBCL. And I work in a department where all patients have lymphoma of various subtypes.

So, I have a somewhat unique position, where we’re able to drill down about subtypes of subtypes of subtypes and get into the weeds. Many physicians are able to keep up with the latest information for DLBCL, but may not be able to have that level of focus. I think it’s important to consider where you’re being treated as something that’s critical. And as mentioned before, asking about clinical trials. And if the place you’re at doesn’t have them or doesn’t want  to talk about them, maybe I should think about getting a second opinion someplace that might. 

Katherine:                  

Yeah. It sounds like there are several factors to weigh when making this decision about treatment. And lately, we’ve been hearing this term shared decision-making, which basically means the patients and clinicians collaborate to make healthcare decisions. And it can help patients take a more active role in their care. So, I’d like to get your thoughts on how best to make this process work. Are there questions that patients should consider asking about their proposed treatment plan?

Dr. Westin:                 

Definitely. And I think shared decision-making is something that we view to be critical. We want everybody on board to feel like they’ve got some sense of ownership of these decisions and that they’re involved in a way that’s meaningful. At the end of the day, the patients make the decisions about which treatments are right for them but they’re trusting their healthcare team to give them good advice. This is not something that patients have expertise in. This is often out of nowhere that somebody is newly diagnosed and this is not on their radar, not something that they ever thought that they’d be sitting in the chair talking about which type of therapy for this cancer.

And so, patients are often relying on the healthcare team to give them good advice. But it’s a fair question and it’s, I think, one that’s appropriate to ask. “Are there other treatment options that we should be talking about?” Basically, exploring, “Is this option you’re presenting the option or is this what you consider to be the best option.” Oftentimes physicians, and PAs, and nurse practitioners might filter information such that, “Yeah, there are other options but here’s why they’re bad. Here’s why they’re not right for you.”

But feeling that you have some clarity about why a treatment choice was made, I think, is often quite important. For first line DLBCL, there are less options to consider. But in the relapse space, there are lots of options. And those should be discussed. And sometimes the healthcare provider, a physician, might have their favorite that they have had good experience with treatment A and therefore they recommend treatment A to the next patient. But that may not always be the right treatment for a given patient.

There may be reasons to consider other treatments. And so, asking that question, “What else is out there? What other treatments are there? Anything else that we should be considering,” I think is a fair question to ask and an important one. And if the answer is, “No, there aren’t other treatment options. This is the one that we should choose,” at least you’re aware of that by asking that question. So, I think that’s an important one to clarify.

Katherine:                  

Right. That leads me to my next question. What advice do you have for patients who don’t feel comfortable speaking up but they have questions about their treatment plan?

Dr. Westin:                 

Yeah. I think written questions sometimes are easier than trying to remember all of your questions. It always is a bit problematic when I go into a visit and a patient has six pages of paper written down for questions. We unfortunately don’t have unlimited time to get through all of those. But trying to condense into – prioritizing. Which of the questions are the ones that I feel like I must get into and which are ones that I can submit to have answered after the fact.

Perhaps the nurse could send me a note through the electronic medical record to answer questions 10-15 on my list. So, I think you can overwhelm a visit if you show up with a list of questions that are even 30-second answers might take an hour to answer all of them. That’s sometimes counterproductive, in my opinion, to have that level of detail on a single visit. But it’s fair to say, “Can I contact the healthcare team to get these answered electronically through the EMR,” or, “Can we table this and go into the questions that we didn’t get to at our next visit?” I think both of those are appropriate.

I think people that are not comfortable to push back on the physician, or the PA, or the nurse, doing things in writing sometimes feels a little bit less confrontational for people. So, I think that’s important to have as a backup option.

Katherine:                  

And I imagine caregivers can be helpful in this regard as well.

Dr. Westin:                 

Correct. Yeah. I think caregivers are a key part of that. And sometimes we go into a room and the patient says, “Nope. Don’t have any questions.”

And then, the caregiver has got a whole list of them. That’s very appropriate. Caregivers have that responsibility and that role to play sometimes, to be the key questioner.

Katherine:                  

Yeah. Are there resources to help patients and their loved ones to weigh the risks and benefits of different treatment options?

Dr. Westin:                 

There are. There’s lots of resources online and I would make sure that you go to a trusted site. Sometimes things sound too good to be true because they’re not true. But things like the lymphoma research foundation or the LLS, the Lymphoma & Leukemia Society, are great sources for information. And sometimes they may link you to other sites. You could also ask your healthcare provider does their institution have anything specific about this disease. Sometimes your healthcare provider might tell you, “Here’s the right article if you want to go read the source, the clinical trial, that was published to show why this treatment’s good.” They may show you that paper.

But online, careful how deep into the weeds you go because sometimes you can find things that aren’t correct. Trust good, trusted sources.

Katherine:                  

Do you think patients should consider a second opinion consult with a specialist?

Dr. Westin:                 

It sometimes is appropriate. Other times, there’s not a lot of time. If treatment’s needed right away, you don’t want to get sicker because you’re waiting for seeing somebody two states over and it takes two weeks to get there. Sometimes you want to start treatment and get the second opinion after you’ve got the fire put out. But the second opinion usually gives more peace of mind than actually changing treatments. But if you’ve got that thought of, “I’m not so sure this is what I’d like to do,” or, “I’d like to get more information,” a second opinion may be very appropriate.

Katherine:                  

Okay. So, to close, Dr. Westin, what would you like to leave the audience with? Are you hopeful?

Dr. Westin:                 

I am very hopeful for the future for how we can beat DLBCL. We currently are curing the majority of our patients. We’ve got new weapons which look incredible and are continuing to help more and more people. But the main engine that we do help more people – the main engine that we make progress is clinical research through clinical trials.

I think this is something that we don’t want to rely on 1970s chemotherapy as we’re getting into the 2030s, and 2040s, and 2070s. This is something that we should be able to improve upon and to move beyond. And the only way we do that is through clinical trials. So, please do ask your doctor about what clinical trial might be right for you and don’t presume that a trial is something that’s experimental or something that’s not safe or not good for me. That’s how your treatments that we’re talking about today were originally discovered was through clinical trials. So, the future is bright. We’re helping a lot of people. And we can do more and do better in the future.

Katherine:                  

Thank you so much for taking the time to join us today, Dr. Westin.

Dr. Westin:                 

Thank you for having me.

Katherine:                  

And thank you to all of our partners.

Please continue to send in your questions to question@powerpatients.org and we’ll work to get them answered on future programs.

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

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

Why Follicular Lymphoma Patients Should Speak Up About Symptoms and Side Effects from Patient Empowerment Network on Vimeo.

Dr. Tycel Phillips urges patients to be active participants in their follicular lymphoma care and discusses the importance of sharing symptoms and side effects with your healthcare team. 

Dr. Tycel Jovelle Phillips is a Medical Oncologist in the Hematology Clinic at The University of Michigan Rogel Cancer Center. Learn more about Dr. Phillips, here.

See More from The Pro-Active Follicular Lymphoma Patient Toolkit

Related Programs:

Follicular Lymphoma: What Treatment Options Are Available?

Follicular Lymphoma: What Treatment Options Are Available?

What Factors Are Considered When Choosing a Follicular Lymphoma Treatment?

What Are the Treatment Goals for Follicular Lymphoma?

What Are the Treatment Goals for Follicular Lymphoma?


Transcript:

Katherine:                  

Let’s take a moment to talk about patient self-advocacy. Patients can sometimes feel like they’re bothering their healthcare team with their questions and their comments. Why is it important for patients to speak up when it comes to symptoms and side effects?

Dr. Phillips:                 

Well, for the side effect part it’s important because your physician can’t potentially prevent the worst thing or further development of side effects. Nobody can. And also, they can’t prevent you from going to the hospital if you don’t let them know you have this certain side effects.

So, it’s very important to communicate side effects, because for the most part there are logical next steps that we can implement to either eliminate the side effects or hopefully prevent them from future treatment regimens. And also, other concerns that you may have. I mean, you only get one life. And this is your body. Then for the best part, it’s best to communicate any concerns that you may have in regard to treatment, or any questions you may have so that you are well aware.

You can’t really fight this appropriately without sort of being well aware of what you’re dealing with, what we’re using to take care of the cancer, and what potential side effects may come up. Again, so we can, again, have you have the best experience possible to try to get your cancer under control. I try to explain to my patients, “I don’t want you to wait until the next visit if you have issues.” I mean, we need to sort of manage these in real time. Even things we don’t take care of right then and there, again, it gives us a heads up and a head start to try to take care of these problems the next time you come to the clinic.

Emerging Follicular Lymphoma Treatment Approaches

Emerging Follicular Lymphoma Treatment Approaches from Patient Empowerment Network on Vimeo.

Dr. Tycel Phillips explores the latest follicular lymphoma treatment approaches. Dr. Phillips discusses CAR-T cell therapy and inhibitor treatments and provides advice on clinical trial participation. 

Dr. Tycel Jovelle Phillips is a Medical Oncologist in the Hematology Clinic at The University of Michigan Rogel Cancer Center. Learn more about Dr. Phillips, here.

See More from The Pro-Active Follicular Lymphoma Patient Toolkit

Related Programs:

Follicular Lymphoma: What Treatment Options Are Available?

Follicular Lymphoma: What Treatment Options Are Available?

What Are the Treatment Goals for Follicular Lymphoma?

What Are the Treatment Goals for Follicular Lymphoma?

What Factors Are Considered When Choosing a Follicular Lymphoma Treatment?


Transcript:

Katherine:                  

Okay. Are there emerging approaches for treating follicular lymphoma that patients should know about?

Dr. Phillips:                 

There are. So, there are some more exciting data that’s coming out, specifically looking at CAR-T, which is chimeric antigen receptor therapy. So, these are augmented T-cells that they collect from the patient, they help recognize – they help to modify those cancer cells to recognize the tumor more appropriately. And they target those tumor cells through a receptor called CD19 that’s present on the tumor.

So, that therapy has shown a significant overall response rate in follicular lymphoma. Even in very heavily pretreated patients. Right now, we’re still waiting on a longer follow up as far as the duration of the response, but as of right now it is a very encouraging therapy.

The downside to that therapy is that you can only receive it at select centers because they have to be a therapeutic approved center. So, you can’t just go sometimes to your regular oncologist’s in say, Skoboken or wherever, and get this treatment. So that’s one downside to that and also, it’s a very expensive treatment and you need insurance approval to cover that. Some of the side effects from that treatment we have gotten better at controlling, such as cytokine release syndrome, which can cause fever, low blood pressures, difficulty breathing.

That typically happens within a set period of time after the infusion of the [inaudible] [26:49] Liso-cel? Maybe chemo? The audio fully cuts out. and modified T-cells. And then there’s also what we call neurotoxicity, meaning you can have some neurological complications. Which, again, we’ve become better at managing. There are a couple CAR-T products on the market right now; all of them seem very comparable and also effective in follicular lymphoma. There’s also treatments called bispecific antibodies, these are like causally off the shelf products, except they use an antibody.

And in this antibody it has sort of two receptors. So, earlier we talked about Rituximab, which is a CD20 antibody. The bispecifics have a CD20 antibody and a CD3 antibody set. So, they bind to the tumor and also bind to your T-cells. And with the binding to the T-cells, they call it T-cell activation and expansion. And it will utilize your own T-cells to fight off the cancer. So, because these bispecifics are given as an off the shelf product, they can likely be able to be given in more accessible areas.

So, you won’t have to select centers to be given. There are still some complications with those, such as CRS and neurotoxicity, but early reports indicate that they’re much less severe and less frequency than what we see with CAR-T. But as of right now, neither the duration of responses of these treatments are still to be determined. So, again, these are two exciting sort of avenues that are moving forward for patients with follicular lymphoma that will be further developed and sort of be expanded on in the coming years.

Katherine:                  

I’d like to just go back for a second and ask you about inhibitor treatments.

Dr. Phillips:                 

Sure. So, as of right now, CAR-T with the chimeric antigen receptor therapy treatment is only approved for patients with relapsed refractory disease. The bispecific antibody therapies are only available in clinical trial. There are some other sort of cyclin inhibitors that haven’t gotten approval. So, we have the PO3 kind of Delta inhibitors, which inhibit the PO3 kind of pathway in a patient with follicular lymphoma.

There were four approved agents in this class of drugs. We had umbralisib, duvelisib, copanlisib, and idelalisib. More recently, two of those, idelalisib and duvelisib, have removed their indications for follicular lymphoma.

So, as of right now we have copanlisib which is an IDP kind of three dose inhibitor and umbralisib, which is an oral agent for the PO3 dose kind of inhibitor. So, both of those agents are typically usually targeted in the third line and beyond. So, patients who fail at least two lines of therapy. We also have tazemetostat, which is an EZH2 inhibitor, that was most recently improved. So, EZH2 mutations occur in about 20% of patients for follicular lymphoma.

But tazemetostat was actually approved for those with and without the mutation as it did show some efficacy in both. It appeared that the overall response rate was a bit higher than those who had an EZH2 mutation, with the duration of the response appears to be equivalent. But I do think for most parts in that situation, for those who lack the mutation the drug is typically used for patients who are unfit for other therapies. Whereas those who have the mutation, it typically probably will be used a bit earlier.

Katherine:                  

What about clinical trials? How do they fit in?

Dr. Phillips:                 

So, for patients with relapsed refractory disease and even some patients with untreated disease, clinical trials are sometimes your best avenue for getting some of these new and promising therapeutics before they get approval. I know sometimes patients are very cautious about clinical trials because they don’t want to be guinea pigs. But I would say all treatments that we offer you have started in clinical trials. And this is the only way to really advance the field. So, if your treating physician has a clinical trial for you, I would strongly recommend patients consider that.

Because, again, they are typically offering you something that they can’t offer you as a standard care, insurance approved treatment. And for the most part, they’re either adding drugs to what we do as far as standard of care treatment approach or offer you something that is very promising in the relapsed refractory setting or upfront setting. That compares very favorably to what we would give you as a standard of care option. That allows you to get this option sooner and earlier when you’re in better shape and less sort of beat up from the other treatments that we would give you.

Katherine:                  

Dr. Phillips, to close, what would you like to leave the audience with? Are you hopeful?

Dr. Phillips:                 

So, I think follicular lymphoma, and lymphoma in general, we are having a better understanding of the biology of the cancer, certain things that are important to the cancer, and certain avenues that we can treat the cancer and avoid some toxicities that have sort of plagued us before. So, I think moving forward there is a ton of research going into improving outcomes for patients with lymphoma, and follicular lymphoma, in general. There are a ton of other treatment options that are coming down the pipe way.

So, I think patients with follicular lymphoma should be very hopeful and encouraged that we will just continue to improve the quality of life and also the duration that they can live with this cancer. I mean, as of right now, until we can cure this cancer, our real goal is to continue to buy you more time. And time buys you more treatments. And most of the treatments that we are developing and are coming, again, down the pipeline are less toxic than some of the things we had 5, 10, definitely 15, 20 years ago.

So, your experience and your quality of life will be improved, and these treatments will also give you more longevity than you could have ever expected. So, patients with lymphoma are living a lot longer and that’s not an important thing to remember. Not hopeful, not – sorry, it’s not hopeless, even though we may say we can’t cure your cancer, the goal is as of right now is to turn this into a chronic disease such as any other chronic disease. Something that you can live with, while managing control. Hopefully, you will continue to enjoy your life and your life won’t be cut short by this cancer.

What Treatment Options Are Available for Relapsed Follicular Lymphoma?

What Treatment Options Are Available for Relapsed Follicular Lymphoma? from Patient Empowerment Network on Vimeo.

Dr. Tycel Phillips answers a patient question regarding relapsed follicular lymphoma and discusses available treatment approaches for relapsed patients.

Dr. Tycel Jovelle Phillips is a Medical Oncologist in the Hematology Clinic at The University of Michigan Rogel Cancer Center. Learn more about Dr. Phillips, here.

See More from The Pro-Active Follicular Lymphoma Patient Toolkit

Related Programs:

What are the stages of Follicular Lymphoma?

What Are the Stages of Follicular Lymphoma?

Dr. Tycel Phillips reviews how follicular lymphoma patients are monitored during remission, including frequency of office visits.

Monitoring Follicular Lymphoma Patients During Remission

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

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


Transcript:

Katherine:                  

We received this question from an audience member prior to the program. Angela asks, “What if I relapse after treatment? What are my options then?”

Dr. Phillips:                 

So, a lot of that, again, depends on the timing. If you relapse early, obviously whatever we gave you in the frontline we would not repeat. And again, if it’s within the 24-month period, again, that takes you on the road of POD24. Wherein patients who are fit enough, it would take you to a route where you would actually probably get a transplant. It’s consolidation to extend our true progression sabbatical.

If you relapse after 24 months, that would really depend on what you received in the frontline because some of these agents can be repeated. If we don’t repeat what you’ve had in a frontline setting – so again, if you’ve got R chemo, then a second line setting, normally what we would do now, based on published data from the augment study, is we would typically treat these patients with Rituximab and lenalidomide, which is that oral medication.

That’s typically if you did receive lenalidomide in the frontline setting and you would not want to repeat that, then we would typically give you R chemo in a second line setting. Again, in most of those situations, it would be RCP or Bendamustine and Rituximab.

Monitoring Follicular Lymphoma Patients During Remission

Monitoring Follicular Lymphoma Patients During Remission from Patient Empowerment Network on Vimeo.

Dr. Tycel Phillips reviews how follicular lymphoma patients are monitored during remission, including frequency of office visits. 

Dr. Tycel Jovelle Phillips is a Medical Oncologist in the Hematology Clinic at The University of Michigan Rogel Cancer Center. Learn more about Dr. Phillips, here.

See More from The Pro-Active Follicular Lymphoma Patient Toolkit

Related Programs:

What are the stages of Follicular Lymphoma?

What Are the Stages of Follicular Lymphoma?

What Treatment Options Are Available for Relapsed Follicular Lymphoma?

What Treatment Options Are Available for Relapsed Follicular Lymphoma?

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

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


Transcript:

Katherine:                  

If someone receives treatment and then goes into remission, how are they monitored?

Dr. Phillips:                 

So, there’s a couple of different ways you can go about it.

Historically, what we would do is we would actually sometimes get CAT scans. But we’ve sort of pulled back from that in recent years. So, as of right now, the recommendation is really just clinical observation, meaning what I call well baby visits. Meaning I will see you in clinic at least every three months for the first year after completion of therapy. We do a system assessment, we’ll do a physical exam, we’ll do labs. Unless there is really something that at the completion of therapy that I’m concerned about, we won’t typically do any imaging.

We reserve imaging until there is a concern at some point, whether you have symptoms, there’s a lab issue, or there’s some other finding that comes up that means that we have to repeat pictures. So those visits I’ll do typically every three months for the first year, spaced out that every four months for the second year, post treatment. And then every six months up until about year four. And then it’ll become a yearly visit thereafter, as long as you continue to remain well without symptoms and nothing on an exam that’s concerning.

Follicular Lymphoma: What Treatment Options Are Available?

Follicular Lymphoma: What Treatment Options Are Available? from Patient Empowerment Network on Vimeo.

Dr. Tycel Phillips provides an overview of follicular lymphoma treatments available to newly diagnosed patients and reviews the pros and cons of oral regimens and stem cell transplant. 

Dr. Tycel Jovelle Phillips is a Medical Oncologist in the Hematology Clinic at The University of Michigan Rogel Cancer Center. Learn more about Dr. Phillips, here.

See More from The Pro-Active Follicular Lymphoma Patient Toolkit

Related Programs:

What Factors Are Considered When Choosing a Follicular Lymphoma Treatment?

Emerging Follicular Lymphoma Treatment Approaches

Emerging Follicular Lymphoma Treatment Approaches

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

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


Transcript:

Katherine:                  

Now that we’ve discussed factors that can impact treatment decisions, would you walk us through the currently available follicular lymphoma treatment approaches? And who they might be right for?

Dr. Phillips:                 

Sure. So, we’ll start with the newly diagnosed or untreated patient. So, again, if you’re newly diagnosed or untreated, your options are the monoclonal antibody, Rituximab. Again, that’s a CD20 monoclonal antibody.

That is typically given once weekly for four weeks and can be repeated, if need be, after a break. And that’s usually reserved for patients who have minimal symptoms, low burden disease. Because, again, data has shown that the bulkier the disease, you’re likely not to have a very durable or deep response with just simulating Rituximab. Additional options include Rituximab plus chemotherapy.

So, we have regimens such as CDP, which is Cytoxan, vincristine, and prednisone. Cytoxan and vincristine being a steroid, prednisone being — sorry, Cytoxan and vincristine being a chemotherapy agent, and prednisone being a steroid. We have our bendamustine, bendamustine being a chemotherapy agent. There’s R-CHOP, which is Cytoxan, vincristine, Adriamycin, and prednisone. And sometimes that is reserved, because unlike the other two, R-CHOP can only be given once because of the accumulation of the anthracycline.

You can only have so much of that in a lifetime before you run a risk of cardiac toxicity.

Katherine:                  

Oh.

Dr. Phillips:                 

And also, R-CHOP as of right now is a standard of care for diffuse large B-cell lymphoma. Which every patient with follicular lymphoma has a chance of transforming into diffuse large B-cell lymphoma at some point. So, we tend to try to reserve R-CHOP if we can. Additionally, more recently, there was a study called Relevance, which evaluated RPMO versus an agent called lenalidomide plus Rituximab, what we call R squared.

So, it was designed as a superiority study, but what came out of it is R squared is probably equivalent, not better, than R chemo. So that is also an option up front. With lenalidomide it’s a little bit different than the other agents, which all give it intravenously, meaning through the vein. But lenalidomide is an oral medication, that you would take 21 days on, and seven days off. And that’s given in conjunction with the Rituximab. And you typically would take that for 12 cycles, or about a year of treatment.

Whereas the chemotherapy regimens that I mentioned before, are typically given for six cycles. Meaning you’ll be taking it for a duration of 18 weeks or 24 weeks. So around four and half to six months for the chemotherapy. Thereafter, it’s a bit controversial, but some patients can then transition to what we call Rituximab maintenance.

Where you would get Rituximab every other month for a period of two to three years. Typically, two years, as a way to delay the return of the cancer. So, R maintenance we know of improves your progression of survival, so the time until the cancer comes back. And there is no survival benefit with maintenance at this point. So, it is in some ways a bit controversial. Especially now, given the pandemic.

Katherine:                  

What about stem cell transplant? Is that an option?

Dr. Phillips:                 

So, for up front, that’s usually not something that we typically do. So, for stem cell transplantation, there are two types of stem cell transplantation. There’s one called an Autologous Stem Cell Transplantation, which is basically really a stem cell rescue.

You get a high dose of chemotherapy after stem cells are collected from you and those stem cells are given back to rescue your body from the chemo. That is typically reserved for what we call high risk patients. So, we give you an initial up front chemotherapy regimen. And if your cancer comes back within less than 24 months of completion of that therapy, you fall into what we call a POD24 category. Which means Progression of Disease within 24 months.

We do know those patients are at higher risk, than patients who stay in remission for at least 24 months or longer. So, if we look at overall survival for those POD24 patients, about half of those patients will succumb to their disease within a five-year period. Which is much different for what we see with the standard for follicular lymphoma patients. So, and that POD24 category it does appear that Autologous Stem Cell Transplantation is beneficial in that patient population. As well as an Allogenic Stem Cell Transplant. So, an allogenic transplant is when you get immune cells from another donor.

So, “allo” meaning from a different person. So, in that sense, you get sort of temporized, and they would give you donor lymphocytes. And those lymphocytes themselves would try to fight off your cancer. So, an Auto transplant is mainly just chemo; an Allo transplant, the donor cells help fight off the cancer.

Katherine:                  

Right.

Dr. Phillips:                 

There are complications to both, which is why they’re not typically given up front. The Allo transplant probably has more risk of complications as well. Those cells can also recognize your body as being foreign and try to fight them off because they don’t originate from you. And there’s also just a risk of other death from that procedure. So, all those have to be taken with a bit of caution. And for the Allo transplant, it’s generally only recommended if you have that, a sibling donor. Because there’s much less risk of complications than versus you get an unrelated donor.

What Is the Patient Role in Follicular Lymphoma Treatment Decisions?

What Is the Patient Role in Follicular Lymphoma Treatment Decisions? from Patient Empowerment Network on Vimeo.

Dr. Tycel Phillips discusses the importance of patient self-advocacy in the treatment of follicular lymphoma. Dr. Phillips reviews shared decision-making, encourages patients to seek second opinions, and to feel confident in their treatment plan. 

Dr. Tycel Jovelle Phillips is a Medical Oncologist in the Hematology Clinic at The University of Michigan Rogel Cancer Center. Learn more about Dr. Phillips, here.

See More from The Pro-Active Follicular Lymphoma Patient Toolkit

Related Programs:

Follicular Lymphoma: What Treatment Options Are Available?

Follicular Lymphoma: What Treatment Options Are Available?

Emerging Follicular Lymphoma Treatment Approaches

Emerging Follicular Lymphoma Treatment Approaches

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

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


Transcript:

Katherine:                  

Yeah, right. What do you feel is the patient’s role in treatment decisions?

Dr. Phillips:                 

So, I know historically a lot of times, you come into an office, and we tell you what you’re going to get and what you’re not going to get. Patients nowadays are I would say a lot more savvy as far as what drugs are out there. And there are a lot more sort of conversational groups on social media between patients who’ve had treatment before and newly diagnosed patients. So, patients come in with a lot more information than they had historically had before. So, in that point, I think it’s more of an open dialogue about what options we have, what options are best for you, and what our treatment goals are at that point.

But all it means, given that we don’t yet have a standard of care, it leaves it open for discussion about sort of which route we choose to try to get your cancer under control.

Katherine:                  

Mm-hmm. Dr. Phillips, if a patient isn’t feeling confident with their treatment plan or their care, do you think they should consider a second opinion or a consult with a specialist?

Dr. Phillips:                 

I think a second opinion is probably best for all patients. It’s always probably good to get a different opinion about how the disease will be treated. So, I do encourage all my patients, even here, to get a second opinion. Some take me up on it, others won’t. But the option is always there to get a second opinion, just to see if anybody would do things any differently.

And I would say for the most part, most people would tend to treat the same way. Very seldom do we have differences in what our treatment recommendations would be. I think the biggest difference in some situations, it’s really about some patients are very uncomfortable being watched with an active cancer. And so, in that situation, that’s probably the biggest discrepancy we have nowadays.

Because of the anxiety of the watch and wait approach. Some patients would like treatment right away, irrespective of whether they need it or not. So, you’ll sometimes get discrepancies with our patients about that.

Katherine:                  

Mm-hmm. What would you say to a patient who may be nervous about offending their current doctor by getting a second opinion?

Dr. Phillips:                 

You shouldn’t be. If your doctor is offended because you’re getting a second opinion, that’s probably not the doctor for you. Yeah, I think that at this point, any physician that’s confident in their decision they’re giving you should not be offended if you go seek reassurance from somebody else.

What Factors Are Considered When Choosing a Follicular Lymphoma Treatment?

What Factors Are Considered When Choosing a Follicular Lymphoma Treatment? from Patient Empowerment Network on Vimeo.

Dr. Tycel Phillips provides insight on how to personalize follicular lymphoma treatment decisions. Dr. Phillips discusses the efficacy of some treatment combinations and which factors impact the decision to begin treatment.

Dr. Tycel Jovelle Phillips is a Medical Oncologist in the Hematology Clinic at The University of Michigan Rogel Cancer Center. Learn more about Dr. Phillips, here.

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Transcript:

Katherine:                  

What is considered when choosing a treatment? Are there test results that can impact the options?

Dr. Phillips:                 

So, there are. So, for the most part we’ll take a couple of things into consideration. So, there is no standard of care for follicular lymphomas. So, there are a couple different options that can be utilized in the upfront setting for the untreated patient. So, comorbidities play a part in what sort of treatment we choose. Patient’s age and fitness will play a part. If there’s any heart disease, that will play a part in the situation as well. And also, as I said, stage will play a part in sort of what our treatment goals are.

So, if our treatment goal for a really unfit patient who we don’t think can tolerate chemotherapy, it’s just symptom control. And they don’t have a lot of disease, we can sometimes treat them with just a monoclonal antibody we call Rituximab as a single agent.

If the patient has a lot of disease, and they are a fit patient, we will tend to combine Rituximab with several different chemotherapy regimens. Because Rituximab plus chemotherapy works better than chemotherapy and also Rituximab alone, especially depending on the amount of the disease that we’re trying to treat. And again, as I mentioned before, if it’s a localized patient there is known to be radiation plus or minus Rituximab in that situation.

But because of some of the side effects of the drugs we use, and obviously now we’re in a pandemic, a lot of those will take sort of some of the consideration of what we use. Some of the drugs that we use are either more sort of immunosuppressants than others, and obviously being in a pandemic, we have to take that into consideration because we’re not treating to cure. Some of the drugs can cause heart damage, some of the drugs can damage nerves, some of the drugs include steroids, which might be prohibited with some patients. So, all that sometimes has to be taken into consideration when we choose our regimen.

Katherine:                  

Yeah. It sounds like there are a lot of factors coming into play here.

Dr. Phillips:                 

Yeah, I mean normally, without a pandemic there’s a lot of factors, and the pandemic just makes things a little bit harder. Just because, again, our patients are already at risk based with some of the treatments we choose.

Katherine:                  

Yeah. Yeah. It’s pretty challenging right now. Does treatment typically start right away?

Dr. Phillips:                 

So, that really depends on a stage and also whether we meet certain sort of criteria to treat. So, we don’t have to treat right away. So, if a patient has a disease, and the disease is not in an area where we think it’s curative, for the most part we can enter into what we call a watch and wait. Meaning we will observe a patient very closely and defer treatment until the patient develops symptoms or other indications that warrant treatment.

We do know that there is no impact on longevity by sort of partaking in this approach. So, you won’t live any longer or you won’t live any shorter if we watch and wait versus initiating therapy right away. It just saves you from having some of the toxicities from treatment without any real major benefits.

So, remember the goal for most patients with follicular lymphoma is to alleviate symptoms or problems. If you don’t have a symptom or a problem, me giving you treatment is not going to make you feel any better. Actually, it would probably make you feel a little bit worse. To get you back to where you were when you started.

What Are the Treatment Goals for Follicular Lymphoma?

What Are the Treatment Goals for Follicular Lymphoma? from Patient Empowerment Network on Vimeo.

Dr. Tycel Phillips reviews the main treatment goals for follicular lymphoma. Dr. Phillips provides insight on treatment decisions based on the patient’s staging and symptoms. 

Dr. Tycel Jovelle Phillips is a Medical Oncologist in the Hematology Clinic at The University of Michigan Rogel Cancer Center. Learn more about Dr. Phillips, here.

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What Is the Patient’s Role in Follicular Lymphoma Decisions?


Transcript:

Katherine:                  

How about we begin with treatment goals? What does this mean exactly and what are the goals of treatment for follicular lymphoma?

Dr. Phillips:                 

So, for the vast majority of patients, follicular lymphoma unfortunately to date is not curable. So, for those patients the goal of treatment when we initiate treatment is to alleviate any symptoms that may be caused by the lymphoma.

So, the patient has fevers, they have night sweats, or there’s some sort of organ damage from the cancer, our goal of treatment is to reverse that and put the cancer into what we call a remission. Remission basically means that from the test that we have currently, we cannot find any evidence of the cancer. That does not mean that you’re cured from the cancer. Patients with earlier stages – so, if you have a patient with stage one or a localized stage two, we approach that with a little bit of a different treatment mindset.

So, if we can catch it early enough, which is very hard given because of the cancer. So, these are really incidentally found, and in some cases, by luck. We can potentially cure follicular lymphoma in these patients. But that’s more of a curative intent with radiation and not systemic therapy. With the advent of PET scans, which have made it a little bit easier to find all the hidden areas of where the follicular lymphoma may hide out, concurrently with a bone marrow biopsy, if a patient is truly stage one, we will initiate therapy with a curative intent.

Whereas, again, with the other patients, our goal is just to control the symptoms and put you into remission.

What Are the Stages of Follicular Lymphoma?

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

How does follicular lymphoma progress? Expert Dr. Tycel Phillips discusses the disease’s stages and the impact on treatment options.

Dr. Tycel Jovelle Phillips is a Medical Oncologist in the Hematology Clinic at The University of Michigan Rogel Cancer Center. Learn more about Dr. Phillips, here.

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Transcript:

Katherine:                  

You’ve touched upon this briefly, but what are the stages of follicular lymphoma? How does it progress?

Dr. Phillips:                 

So, when we talk about follicular lymphoma, so, in stages there are four stages. Stage one, which means it’s localized in one general area. Or potentially into one organ. Stage two means that it is on one side of the diaphragm. So, we use your diaphragm as sort of a dividing point. Sort of like a Mason-Dixon line of the body. So, if it’s all on one side, it’s a stage two. If you have disease both above and below the diaphragm, you’d be considered to be stage three. Stage four indicates that you either have an organ involved in a nonadjacent lymph node.

So, let’s just say there’s a spot in your liver and you have a lymph node in your neck, or if your bone marrow is involved. For the most part, most patients with follicular lymphoma, because again, when develops, it doesn’t really develop with symptoms and typically is in there for quite a bit of time. Most patients will have what we consider to be advanced stage of this disease, meaning it’s stage three or four. Because the cancer has quite a bit of time to grow and move around before we find it.

It also comes in a set of grades. So, stage and grades are different. Stage is location, grade is what the pathologist sort of looks at when he looks under a microscope – how angry or big the cells look. So, we typically divide it into grades one and two; it’s very hard to separate one and two, so it’s generally grouped together. Which means there are mostly small round cells and very few big cells. And then we have grade 3A and grade 3B. And grade 3A means that when they look at it under the microscope, they see a fair number of larger cells which means that’s probably a bit more aggressive than the grade one to two.

And grade 3B is sort of separated into a category of its own. And we tend to treat grade 3B as a more aggressive lymphoma. we treat that very closely, like we treat the diffuse large B-cell lymphomas. So, grade 3B is in a category of its own, and then grades one to two and grade three are sort of clumped together.

What Is Follicular Lymphoma?

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

Dr. Tycel Phillips gives his expert definition of follicular lymphoma and explains why this disease is often found incidentally. 

Dr. Tycel Jovelle Phillips is a Medical Oncologist in the Hematology Clinic at The University of Michigan Rogel Cancer Center. Learn more about Dr. Phillips, here.

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Transcript:

Katherine:                  

What exactly is follicular lymphoma?

Dr. Phillips:                 

So, follicular lymphoma is a malignant growth or tumor in some situations, depending on how you want to describe it, of lymphocytes. Lymphocytes are normal cells that we have in our body and are a very important part of our immune system. For a very generic sort of description, lymphocytes come in what we call B and T-cells. B-cells, as I mentioned, are the cells that help make antibodies and it’s how we fight viruses and other diseases. These antibodies help our immune system recognize and hopefully clear these pathogens quicker.

And then we also have T-cells, which I like to refer to as like jailers, who will survey and sort of try to eliminate any abnormal cells. Lymphoma can come in a B-cell lymphoma or a T-cell lymphoma. For western Europe and the U.S., B-cell lymphomas account for the vast majority of cases of lymphoma; about 85%. When we look at B-cell lymphomas, we have Hodgkin’s Lymphomas, which are a separate category, and non-Hodgkin’s lymphomas.

And follicular lymphoma is the most common indolent, or what we consider slow growing, of non-Hodgkin’s lymphomas. So, when we talk about indolent as slow growing, these are lymphomas that are more than likely to be found incidentally by CAT scans. Or if you’re going for some other procedure, they’ll notice that you have enlarged lymph nodes and a biopsy will lead to a diagnosis of follicular lymphoma. In most cases, the cancer has probably been there for several years, at least months, before it’s been found. And in most cases, most patients have been living happily unbeknownst to them together with this cancer.

And so, follicular lymphoma being in that way is something that, again, we consider to be slow growing because, again, the more aggressive lymphomas tend to come with symptoms. So, these can come on more insidiously and are typically found incidentally.

Is the COVID Vaccine Safe and Effective for Follicular Lymphoma Patients?

Is the COVID Vaccine Safe and Effective for Follicular Lymphoma Patients? from Patient Empowerment Network on Vimeo.

Dr. Tycel Phillips discusses the efficacy and safety of the COVID vaccine for follicular lymphoma patients. Dr. Phillips reviews the effects it may have on patients and provides his expert advice.

Dr. Tycel Jovelle Phillips is a Medical Oncologist in the Hematology Clinic at The University of Michigan Rogel Cancer Center. Learn more about Dr. Phillips, here.

See More from The Pro-Active Follicular Lymphoma Patient Toolkit

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What Is the Patient’s Role in Follicular Lymphoma Decisions?


Transcript:

Katherine:                  

Is the COVID vaccine safe and effective for follicular lymphoma patients?

Dr. Phillips:                 

So, the vaccine is safe. The effectiveness of the vaccine does in some part depend on whether the patients are untreated or they’re currently on treatment. Some of the treatments that we use to combat follicular lymphoma and other lymphomas unfortunately targets one of the key cells in the response to the vaccine. So, as follicular lymphoma is a cancer of the malignant B-cell, one of our treatments are directed, you know, obviously killing off malignant B-cells. And unfortunately, we do take some innocent bystanders. So, your normal B-cells will be impacted, which does sometimes impact your abilities to make antibodies.

But we do know from research that the vaccines will also trigger a T-cell response, which most of our treatments will not impact. So, well, we do recommend for our patients to be vaccinated. Because, again, it is safe. And, again, it is effective even if it’s not as effective as it would be if you weren’t on treatment.

Katherine:                  

Mm-hmm. Better to be safe than sorry.

Dr. Phillips:                 

Yes.