Tag Archive for: NHL

How Is DLBCL Treated?

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

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

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

See More From The Pro-Active DLBCL Patient Toolkit

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Which Factors Impact DLBCL Treatment Decisions?

Which Factors Impact DLBCL Treatment Decisions?

How Is DLBCL Treatment Effectiveness Monitored?

How Is Relapsed/Refractory DLBCL Treated?

How Is Relapsed/Refractory DLBCL Treated?


Transcript:

Katherine:      

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

Dr. Kline:       

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

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

Katherine:      

Right.

Dr. Kline:       

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

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

Katherine:                  

Right. That’s good news.

Dr. Kline:       

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

Katherine:      

That is good news. What about stem cell transplants?

Dr. Kline:       

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

Katherine:      

Where do clinical trials fit in?

Dr. Kline:       

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

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

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

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

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

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

See More From The Pro-Active DLBCL Patient Toolkit

Related Programs:

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

Which Factors Impact DLBCL Treatment Decisions?

Which Factors Impact DLBCL Treatment Decisions?

How Is DLBCL Treatment Effectiveness Monitored?


Transcript:

Katherine:      

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

Dr. Kline:       

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

Katherine:      

How is it typically diagnosed?

Dr. Kline:       

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

Katherine:      

How does somebody know if they have DLBCL?

Dr. Kline:       

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

Katherine:      

And how does the condition progress?

Dr. Kline:       

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

Katherine:      

And how is it staged, Dr. Kline?

Dr. Kline:       

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

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

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

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

Katherine:                  

What are the subtypes of DLBCL?

Dr. Kline:       

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

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

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

Katherine:      

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

Dr. Kline:       

Good.

Advice for Speaking Up About Your DLBCL Care

Advice for Speaking Up About Your DLBCL Care from Patient Empowerment Network on Vimeo.

Why should you speak up about your DLBCL care? Dr. Jason Westin explains why being an active member of your healthcare team is vital and provides helpful resources.

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.

See More From The Pro-Active DLBCL Patient Toolkit

Related Programs:

How Can You Access DLBCL Clinical Trials?

Tips for Making Treatment Decisions WITH Your DLBCL Team

What Helps Determine a Patient’s DLBCL Treatment Path?

What Helps Determine a Patient’s DLBCL Treatment Path?


Transcript:

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.

Tips for Making Treatment Decisions WITH Your DLBCL Team

Tips for Making Treatment Decisions WITH Your DLBCL Team from Patient Empowerment Network on Vimeo.

DLBCL expert, Dr. Jason Westin, explains shared decision-making and provides tips for engaging in your treatment decisions.

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.

See More From The Pro-Active DLBCL Patient Toolkit

Related Programs:

Advice for Speaking Up About Your DLBCL Care

Who Are the Members of Your DLBCL Care Team?

Who Are the Members of Your DLBCL Care Team?

What Helps Determine a Patient’s DLBCL Treatment Path?

What Helps Determine a Patient’s DLBCL Treatment Path?


Transcript:

Katherine:                  

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.

What Helps Determine a Patient’s DLBCL Treatment Path?

What Helps Determine a Patient’s DLBCL Treatment Path? from Patient Empowerment Network on Vimeo.

Since no two patients are exactly alike, how is DLBCL treatment determined? Dr. Jason Westin explains what factors he considers when determining a patient’s treatment path. 

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.

See More From The Pro-Active DLBCL Patient Toolkit

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Advice for Speaking Up About Your DLBCL Care

An Expert Overview of DLBCL Treatment Approaches

An Expert Overview of DLBCL Treatment Approaches

Tips for Making Treatment Decisions WITH Your DLBCL Team


Transcript:

Katherine:                  

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.

Emerging DLBCL Treatment Approaches

Emerging DLBCL Treatment Approaches from Patient Empowerment Network on Vimeo.

What is next for DLBCL treatment? Dr. Jason Westin describes emerging DLBCL treatment approaches.

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.

See More From The Pro-Active DLBCL Patient Toolkit

Related Programs:

Advice for Speaking Up About Your DLBCL Care

What Helps Determine a Patient’s DLBCL Treatment Path?

What Helps Determine a Patient’s DLBCL Treatment Path?

Tips for Making Treatment Decisions WITH Your DLBCL Team


Transcript:

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.

How Can You Access DLBCL Clinical Trials?

How Can You Access DLBCL Clinical Trials? from Patient Empowerment Network on Vimeo.

Where do clinical trials fit into a DLBCL treatment plan? Dr. Jason Westin explains the importance of trials and discusses how patients can learn more.

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.

See More From The Pro-Active DLBCL Patient Toolkit

Related Programs:

Emerging DLBCL Treatment Approaches

What Helps Determine a Patient’s DLBCL Treatment Path?

What Helps Determine a Patient’s DLBCL Treatment Path?

Tips for Making Treatment Decisions WITH Your DLBCL Team


Transcript:

Katherine:                  

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.

An Expert Overview of DLBCL Treatment Approaches

An Expert Overview of DLBCL Treatment Approaches from Patient Empowerment Network on Vimeo.

How is Diffuse Large B-Cell Lymphoma (DLBCL) treated? Dr. Jason Westin provides an overview of current DLBCL approaches.

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.

See More From The Pro-Active DLBCL Patient Toolkit

Related Programs:

Emerging DLBCL Treatment Approaches

What Helps Determine a Patient’s DLBCL Treatment Path?

What Helps Determine a Patient’s DLBCL Treatment Path?

How Can You Access DLBCL Clinical Trials?


Transcript:

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.

Understanding Your DLBCL Treatment Goals

Understanding Your DLBCL Treatment Goals from Patient Empowerment Network on Vimeo.

 What are the goals of DLBCL treatment? Expert Dr. Jason Westin explains how treatment goals and timing are established.

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.

See More From The Pro-Active DLBCL Patient Toolkit

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Transcript:

Katherine:                  

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.

Who Are the Members of Your DLBCL Care Team?

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

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

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

See More From The Pro-Active DLBCL Patient Toolkit

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Understanding Your DLBCL Treatment Goals

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How Can You Access DLBCL Clinical Trials?


Transcript:

Katherine:

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

Dr. Westin:                 

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

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

Katherine:                  

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

Dr. Westin:                 

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

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

Katherine:                  

What role do caregivers take?

Dr. Westin:                 

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

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

DLBCL Treatment Approaches: What You Need to Know

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

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

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

See More From The Pro-Active DLBCL Patient Toolkit

Download Guide

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

An Overview of Current DLBCL Treatment Approaches

DLBCL Treatment Approaches What You Need to Know Resource Guide


Transcript:

Katherine:      

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

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

Dr. Kline:       

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

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

Katherine:      

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

Dr. Kline:       

Pleasure.

Katherine:      

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

Dr. Kline:       

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

Katherine:      

How is it typically diagnosed?

Dr. Kline:       

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

Katherine:      

How does somebody know if they have DLBCL?

Dr. Kline:       

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

Katherine:      

And how does the condition progress?

Dr. Kline:       

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

Katherine:      

And how is it staged, Dr. Kline?

Dr. Kline:       

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

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

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

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

Katherine:                  

What are the subtypes of DLBCL?

Dr. Kline:       

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

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

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

Katherine:      

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

Dr. Kline:       

Good.

Katherine:      

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

Dr. Kline:       

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

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

Katherine:      

Right.

Dr. Kline:       

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

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

Katherine:                  

Right. That’s good news.

Dr. Kline:       

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

Katherine:      

That is good news. What about stem cell transplants?

Dr. Kline:       

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

Katherine:      

Where do clinical trials fit in?

Dr. Kline:       

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

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

Katherine:      

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

Dr. Kline:       

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

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

Katherine:                 

Yeah. What kind of side effects should patients expect?

Dr. Kline:       

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

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

Katherine:      

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

Dr. Kline:       

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

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

Katherine:                  

So, what does remission mean exactly then?

Dr. Kline:       

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

Katherine:      

Is a cure possible for patients with DLBCL?

Dr. Kline:       

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

Katherine:      

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

Dr. Kline:       

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

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

Katherine:                  

How does relapse then differ from refractory?

Dr. Kline:       

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

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

Katherine:                  

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

Dr. Kline:       

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

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

Katherine:      

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

Dr. Kline:       

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

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

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

Katherine:      

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

Dr. Kline:       

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

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

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

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

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

Katherine:      

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

Dr. Kline:       

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

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

Katherine:      

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

Dr. Kline:       

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

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

Katherine:      

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

Dr. Kline:       

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

Katherine:                  

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

Dr. Kline:                   

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

Katherine:      

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

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


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

DLBCL Treatment Approaches: What You Need to Know Resource Guide

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

An Overview of Current DLBCL Treatment Approaches

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

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

 

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.

Three Ways to Partner in Your Waldenström Macroglobulinemia Care

How can Waldenström macroglobulinemia (WM) patients become partners in their care? In the “Waldenström Macroglobulinemia Treatment Decisions: What’s Right for You?” program, expert Dr. Jorge Castillo from Dana-Farber Cancer Institute shares three key ways that WM patients can take a more active role for optimal health outcomes.

1. Ask Your Doctor When the Appropriate Time to Treat Is

WM patients can often remain in the watch-and-wait phase of their disease for many years, but it’s important for the oncologist to monitor the patient during this time. Ask your doctor when the appropriate time to treat will be, make sure that your bloodwork is monitored on a regular basis, and report how you’re feeling and all of your symptoms.

 2. Establish Your Treatment Goals and Plan

Depending on each Waldenström macroglobulinemia patient, treatment goals may vary depending on the patient age, overall health, lifestyle, and other factors. Work together with your healthcare team to determine your treatment goals and then learn about treatment options. Take action to both ask your WM provider about treatment options and ask about credible Waldenström macroglobulinemia online resources to do further research. And then discuss your treatment options with your WM provider to determine the best treatment for you.

3. Become a Proactive Patient

WM patients can take actions to further advocate for their best care. Educate yourself about your condition by reading credible online resources like International Waldenstrom’s Macroglobulinemia Foundation, Lymphoma Research Foundation, and The Leukemia & Lymphoma Society. Bring a friend or family member to your appointments with your Waldenström macroglobulinemia doctor to help take notes or to ask questions – and make sure to advocate for yourself if you feel ignored or unheard.

By taking a more active role in their care, Waldenström macroglobulinemia patients can help determine the best treatment plan for optimal health outcomes.

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.