Understanding Immune System Recovery Post Follicular Lymphoma Treatment

Understanding Immune System Recovery Post Follicular Lymphoma Treatment from Patient Empowerment Network on Vimeo.

Follicular lymphoma treatment may impact the immune system in different ways. Expert Dr. Kami Maddocks from The Ohio State University Comprehensive Cancer Center discusses how immune function may be impacted and how recovery is monitored.

See More from START HERE Follicular Lymphoma

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Transcript:

Lisa Hatfield:

So another person is asking, “How long does it take for the immune system to really start bouncing back after follicular lymphoma treatment? And what blood test results indicate a weakening immune system?”

Dr. Kami Maddocks:

Yeah, so this is a great question. It also can be a complicated question with many different answers. So one, it can depend on the treatment that a patient receives. Two, it can actually depend on their different parts to the immune system. So different parts of the immune system can recover at different time periods from treatment. So acutely, our neutrophils are something that often gets…they’re bacteria infection fighting cells. Those are the cells that during chemotherapy, when that count gets low and patients are counseled on if you have a fever during your treatment, you need to be evaluated and be seen because if you have an infection and a fever during chemo or some of these treatments, your blood counts are low, you might need to be in the hospital on IV antibiotics.

So those neutrophil parts of it are usually quicker to recover, so they drop with treatment and then recover pretty quickly with each cycle, including after an ended treatment cycle. Sometimes when patients have been treated with several different therapies, it can be harder for those cells to recover. They can stay lower for longer. Then there’s a component of the immune system, so we are ripping out the lymphocytes, because that’s what the cancers have.

And so things targeted. Chemotherapy in general kills the lymphocytes, but there also are targeted therapies like rituximab (Rituxan) bispecific antibodies CAR-T cells, those are particularly wiping…targeted towards proteins on the lymphocytes and wiping them out. Those can be for a more prolonged time. In general, we usually think of about a six-month period so patients can be at increased risk for viral infections in that six-month period may not respond as well to vaccines in that period.

But for some patients it takes longer and some patients recover quicker. It also can depend on where patients are at in their journey because every therapy that they’ve had can take a little bit longer to recover. The last part I’ll add is just sometimes when the lymphocytes are wiped out for a long time people’s proteins, their immunoglobulins that help fight infection get low. And so sometimes we actually will end up giving patients replacement of IVIG to help if they’re having lots of infections.


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What Can Follicular Lymphoma Patients Expect for PET-CT Scans?

What Can Follicular Lymphoma Patients Expect for PET-CT Scans? from Patient Empowerment Network on Vimeo.

Follicular lymphoma patients may need to undergo PET-CT scans, so what should they expect? Expert Dr. Kami Maddocks from The Ohio State University explains the roles of PET and CT scans and the timing when patients commonly need the scans.

See More from START HERE Follicular Lymphoma

Related Resources:

When Should Follicular Lymphoma Treatment Begin

When Should Follicular Lymphoma Treatment Begin?

Understanding Immune System Recovery Post Follicular Lymphoma Treatment

What Should Follicular Lymphoma Patients Know About Recurrence


Transcript:

Lisa Hatfield:

So we have a patient who is asking, “What is the recommended frequency and length of imaging PET-CT as a diagnostic tool?” And I wonder if it might be helpful, since we have a broad range of…our audience kind of runs the gamut of newly diagnosed to people who are in remission, people in watch and wait, maybe you can explain the frequency and length of imaging for those who are watching and waiting, and also for those who are maybe in remission, and those who are currently in active treatment.

Dr. Kami Maddocks

Yeah, so I think this is a great question. I think the important thing about PET scans is to recognize where and when they have a role in follicular lymphoma, because they’re not used as monitoring tools in follicular lymphoma long term in either watch and wait, typically, or in patients who’ve had treatment. So follicular lymphoma, when patients have a diagnosis, we like to get a PET scan, because it helps us stage the follicular lymphoma a little bit better than just generalized CT scans. When patients are being monitored and they have a change in symptoms, a change on maybe routine CT scans and their physical exam in their labs, then you may want a PET scan. We always want to get one before a patient requires treatment, and then after a patient has treatment to help determine the response by PET scan.

As far as monitoring in patients who are on watch and wait or monitoring in a patient who’s received treatment, routine PET imaging is actually not recommended. It’s not recommended by the guidelines. And honestly, they’re not usually approved by insurance for routine monitoring, because they’re not recommended. So what is recommended is seeing your physician, usually at a three to six-month window, depending on where you are in your journey. And then usually, for routine monitoring, CT scans are done. If somebody’s in watch and wait, oftentimes they might initially be done at three months, then six months, then even yearly, and same with after treatment.


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What’s the News on Follicular Lymphoma and Bispecific Antibodies?

What’s the News on Follicular Lymphoma and Bispecific Antibodies? from Patient Empowerment Network on Vimeo.

What should follicular lymphoma patients know about bispecific antibodies? Expert Dr. Kami Maddocks from The Ohio State University discusses treatment and research updates on bispecific antibodies.

See More from START HERE Follicular Lymphoma

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What’s New for Follicular Lymphoma Treatment News and Developments

What’s New for Follicular Lymphoma Treatment News and Developments?

Understanding Immune System Recovery Post Follicular Lymphoma Treatment

What Should Follicular Lymphoma Patients Know About Recurrence


Transcript:

Lisa Hatfield:

So regarding clinical trials right now, are there any clinical trials that you are conducting or that you’re particularly excited about for patients that they might want to ask their providers about?

Dr. Kami Maddocks:

Yes, so we’re also looking at opening a trial for frontline follicular lymphoma that looks at the use of bispecific antibodies. So I think that’s very exciting, because in general, it’s a well-tolerated therapy. And I think if it gives us a chance to produce very good outcomes, but without the toxicity of chemotherapy in the frontline setting, that to me is super exciting for patients.

We’re also looking at different bispecific antibodies. So they currently approved one target CD20. We have a CD19-targeted bispecific antibody that I also think is exciting to look at the potential for different targets because then once a patient has had one, you’re targeting something different, and the thought is that they might still be able to respond to a different one.

Lisa Hatfield:

Yeah. So with bispecifics then, is that continuous therapy, or is that limited duration therapy?

Dr. Kami Maddocks:

It actually depends on the bispecific. So in follicular right now, the one approved is for a limited duration. When you look at a few of the others that have been approved and other lymphomas that are being studied in follicular lymphoma, there’s a little bit of a variation between continued treatment and limited-duration therapy. I think what’s exciting about a lot of the combination studies is they are more looking at a defined period of time with the combinations.

Lisa Hatfield:

Which I’m sure a lot of patients love to hear that. Limited duration, there’s an end to this possibly, so yeah. 

Dr. Kami Maddocks:

Yeah. Nobody wants to be on treatment forever. 


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What Follicular Lymphoma Treatment Side Effects Should Patients Expect?

What Follicular Lymphoma Treatment Side Effects Should Patients Expect? from Patient Empowerment Network on Vimeo.

Follicular lymphoma patients might experience different side effects, so what should patients expect? Expert Dr. Kami Maddocks from The Ohio State University Comprehensive Cancer Center discusses various treatments and common side effects that patients experience.

See More from START HERE Follicular Lymphoma

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Transcript:

Lisa Hatfield:

 So when you do have patients going through therapy, what are the typical side effects? And how do you help them manage those side effects of treatment?

Dr. Kami Maddocks:

Yeah, that’s a great question, and it’s very dependent, because we have so many different treatments now. It’s very dependent on the treatments that the patient’s getting. So things like single-agent antibody therapy with single-agent rituximab (Rituxan), most of the time, the biggest risk of that is the first time a patient can get it, they can have an infusion reaction. That’s managed as it’s happening. And then they tolerate that, in general, fairly well. That does wipe out the lymphocytes, as most of the treatments do, and puts patients at increased risk of infections, particularly viral infections for a period of time.

Chemotherapy, the most common chemo that we give for follicular lymphoma, I would say nausea, fatigue, and an increased risk of infection are kind of the bigger things. Bendamustine (Treanda) is a commonly used chemotherapy for follicular lymphoma, and that’s some of the big side effects from that.

Lenalidomide (Revlimid), the oral pill, so cytopenias infection, GI toxicity and rash are potentially the more common side effects of that. Less common, but we’re always concerned about blood clots, so most patients will take either an aspirin or a blood thinner, depending on their clot history when they’re on lenalidomide. The bispecific antibodies have a particular risk called cytokine release syndrome, so that immune systems activated, but it can almost get overactivated.

The most common symptom of that is fever, and so patients are counseled very closely on that. But activation of the immune system with that fever can also include changes in blood pressure or the need for some oxygen. Some of the CAR T-cell therapy has the same risk of the cytokine release, also has potential neuro side effects. And then longer term is just how long the patients’ immune systems take to recover. There can be risk for infections.


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When Should Follicular Lymphoma Treatment Begin?

When Should Follicular Lymphoma Treatment Begin? from Patient Empowerment Network on Vimeo.

When might treatment begin for follicular lymphoma patients? Expert Dr. Kami Maddocks from The Ohio State University Comprehensive Cancer Center explains factors that are weighed in treatment decisions and situations when treatment might begin.

See More from START HERE Follicular Lymphoma

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What Are Predictors of Follicular Lymphoma Relapse or Transformation


Transcript:

Lisa Hatfield:

So you probably have a number of patients who are in the watch-and-wait mode right now. When do you decide when you use these particular therapies? And if you use them earlier on, is there any chance of managing the follicular lymphoma longer or a longer remission?

Dr. Kami Maddocks:

That’s a great question. So from what we know from follicular lymphoma, it’s, as I mentioned, an indolent lymphoma, not curable, but very treatable. So many patients that are diagnosed with follicular lymphoma, the median overall survival is very long, and it’s more, again, like a chronic disease that we manage with treatment. So sometimes we recommend watch and wait because patients, there’s never been any study showing that early treatment with the therapies we had improved overall survival. So it’s a balance between deciding when patients have a need for treatment versus not exposing them to treatment that can cause toxicities, if we know that it ultimately doesn’t make them live longer.

But, of course, we want to both treat patients who need disease treatment either for symptoms or for things that are going on by the size of their lymph nodes. So when patients have low blood counts, when they have symptomatic lymph nodes, when they have lymph nodes that are potentially causing a problem to an organ, or we foresee that it could cause a problem to an organ, when they have certain burdens of disease or when they have enough and large lymph nodes that we think that there’s going to be a problem in the near future without treating is when we decide to initiate that treatment. 


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What’s New for Follicular Lymphoma Treatment News and Developments?

What’s New for Follicular Lymphoma Treatment News and Developments? from Patient Empowerment Network on Vimeo.

Follicular lymphoma treatment options are expanding, so what’s the latest news? Expert Dr. Kami Maddocks from The Ohio State University Comprehensive Cancer Center shares treatment and research updates from the ASH 2023 conference.

See More from START HERE Follicular Lymphoma

Related Resources:

When Should Follicular Lymphoma Treatment Begin

When Should Follicular Lymphoma Treatment Begin?

What Can Follicular Lymphoma Patients Expect for PET-CT Scans

What Are Predictors of Follicular Lymphoma Relapse or Transformation


Transcript:

Lisa Hatfield:

Dr. Maddocks, there is a great deal going on in terms of emerging treatment options and clinical trial data in follicular lymphoma. Can you speak a bit to the exciting developments in follicular lymphoma treatment and the major highlights that are just coming out of the ASH 2023 meeting?

Dr. Kami Maddocks:

Yeah, I think it is really exciting where everything is at right now in the development of treatments for follicular lymphoma. I think one of the most exciting developments is in the immunotherapy treatments that we have. So just a little less than a year ago, this month, December of last year, we saw the approval of the first bispecific antibody in relapsed/refractory follicular lymphoma. So bispecific antibodies are immunotherapy. They target a protein on the lymphoma cell, the follicular lymphoma, but then they also target the T cell to activate it to engage the immune system to attack the lymphoma. So these bispecific antibodies have been highly effective in relapsed/refractory follicular lymphoma. 

And what we saw coming out of ASH is some data looking at these in the frontline setting. So a lot of patients will get treated with immunotherapy with rituximab (Rituxan) antibody or chemoimmunotherapy with rituximab in combination with chemo therapies. And we saw some data looking at activity of these bispecific antibodies as the first-line treatment. In addition, currently right now, they’re approved as…the drug that’s approved is called mosunetuzumab-axgb (Lunsumio). That’s approved as a single agent in the relapsed/refractory setting.

And so there were some smaller trials looking at this in combination with other agents to see the outcomes that that produced. I think one of the exciting things is looking at it in combination with lenalidomide (Revlimid), which is an approved oral immunomodulatory therapy in relapsed/refractory follicular lymphoma. And then just lastly, I’ll say there were a few smaller studies looking at combinations of oral targeted therapies and immune therapies in the frontline setting as well.

Lisa Hatfield:

And with so many of these developments, what do you think are the most important highlights for patients and families with current treatment with clinical trials? Anything that you can highlight upon for patients and families?

Dr. Kami Maddocks:

I think, really, when you look at follicular lymphoma or more recent approvals that were looking at bispecific antibodies, chimeric antigen receptor, CAR-T cells, have been approved in relapsed follicular lymphoma, EZH2 inhibitors, so targeted therapies lenalidomide. I mean, really, when you look at follicular lymphoma, we see that patients are living longer and longer. Follicular lymphoma for many patients is somewhat like a chronic disease.

It’s managed over time with periods where they get treatment and then don’t. And what you look at with all of our therapies is we really are looking at immunotherapy and targeted therapies, both in the relapsed setting, but also now in the frontline setting, as opposed to or in place of chemotherapy.


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Follicular Lymphoma Patient Expert Q&A: Dr. Kami Maddocks

Follicular Lymphoma Patient Expert Q&A: Dr. Kami Maddocks from Patient Empowerment Network on Vimeo.

Follicular lymphoma expert, Dr. Kami Maddocks discusses the latest in follicular lymphoma, meaningful highlights from the American Society of Hematology 2023 meeting and answers questions submitted by patients and care partners.

Dr. Maddocks is a hematologist/oncologist specializing in treating lymphatic diseases from The Ohio State University. Learn more about Dr. Maddocks.

See More from START HERE Follicular Lymphoma

Download Guide | Descargar Guía

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Relapsed/Refractory Follicular Lymphoma Treatments and Bispecific Antibodies

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Understanding Follicular Lymphoma Disease Progression Symptoms and Monitoring


Transcript:

Lisa Hatfield:

Welcome to the START HERE Patient Empowerment Network Program. This program bridges the expert and patient voice, enabling patients and care partners to feel comfortable asking questions of their healthcare team. Joining me today is Hematologist Oncologist, Dr. Kami Maddocks, Professor of Clinical Internal Medicine in the Division of Hematology at the Ohio State University Wexner Medical Center.

Dr. Maddocks specializes in treating patients with B-cell malignancies, including non-Hodgkin’s lymphoma, Hodgkin’s lymphoma, and chronic lymphocytic leukemia. Dr. Maddocks researches new therapies for these hematologic malignancies largely through evaluating new targeted therapies in clinical trials. Thank you so much for joining us, Dr. Maddocks.

Dr. Kami Maddocks:

It’s really a pleasure to be here with you, Lisa. Thank you so much for having me.

Lisa Hatfield:

The world is complicated, but understanding your follicular lymphoma diagnosis and treatment options along your journey doesn’t have to be. The goal of START HERE is to create actionable pathways for getting the most out of your follicular lymphoma treatment and survivorship. Joining us today are patients and care partners facing a follicular lymphoma diagnosis, some of which are newly diagnosed, in active treatment, watch and wait, and also living for years with their disease. No matter where you are in your journey, this program is designed to provide easy-to-understand, reliable, and digestible information to help you make informed decisions. I’m thrilled you’ve joined us.

Please remember before we start to download the program resource guide via the QR code. There is great information there that will be useful during this program and after. So let’s get started. Dr. Maddocks, there is a great deal going on in terms of emerging treatment options and clinical trial data in follicular lymphoma. Can you speak a bit to the exciting developments in follicular lymphoma treatment and the major highlights that are just coming out of the ASH 2023 meeting?

Dr. Kami Maddocks:

Yeah, I think it is really exciting where everything is at right now in the development of treatments for follicular lymphoma. I think one of the most exciting developments is in the immunotherapy treatments that we have. So just a year ago, we saw the approval of the first bispecific antibody in relapsed/refractory follicular lymphoma. So bispecific antibodies are immunotherapy. They target a protein on the lymphoma cell, the follicular lymphoma, but then they also target the T cell to activate it to engage the immune system to attack the lymphoma.

So these bispecific antibodies have been highly effective in relapsed/refractory follicular lymphoma. And what we saw coming out of ASH is some data looking at these in the frontline setting. So a lot of patients will get treated with immunotherapy with rituximab (Rituxan) antibody or chemoimmunotherapy with rituximab in combination with chemo therapies. And we saw some data looking at activity of these bispecific antibodies as the first-line treatment. In addition, currently right now, they’re approved as…the drug that’s approved is called mosunetuzumab-axgb (Lunsumio). That’s approved as a single agent in the relapsed/refractory setting.

And so there were some smaller trials looking at this in combination with other agents to see the outcomes that that produced. I think one of the exciting things is looking at it in combination with lenalidomide (Revlimid), which is an approved oral immunomodulatory therapy in relapsed/refractory follicular lymphoma. And then just lastly, I’ll say there were a few smaller studies looking at combinations of oral targeted therapies and immune therapies in the frontline setting as well.

Lisa Hatfield:

Great, thank you for that. And with so many of these developments, what do you think are the most important highlights for patients and families with current treatment with clinical trials? Anything that you can highlight upon for patients and families?

Dr. Kami Maddocks:

I think, really, when you look at follicular lymphoma or more recent approvals that were looking at bispecific antibodies, chimeric antigen receptor, CAR-T cells, have been approved in relapsed follicular lymphoma, EZH2 inhibitors, so targeted therapies lenalidomide. I mean, really, when you look at follicular lymphoma, we see that patients are living longer and longer. Follicular lymphoma for many patients is somewhat like a chronic disease.

It’s managed over time with periods where they get treatment and then don’t. And what you look at with all of our therapies is we really are looking at immunotherapy and targeted therapies, both in the relapsed setting, but also now in the frontline setting, as opposed to or in place of chemotherapy.

Lisa Hatfield:

Great. Thank you. So you probably have a number of patients who are in the watch-and-wait mode right now. When do you decide when you use these particular therapies? And if you use them earlier on, is there any chance of managing the follicular lymphoma longer or a longer remission?

Dr. Kami Maddocks:

That’s a great question. So from what we know from follicular lymphoma, it’s, as I mentioned, an indolent lymphoma, not curable, but very treatable. So many patients that are diagnosed with follicular lymphoma, the median overall survival is very long, and it’s more, again, like a chronic disease that we manage with treatment. So sometimes we recommend watch-and-wait because patients, there’s never been any study showing that early treatment with the therapies we had improved overall survival. So it’s a balance between deciding when patients have a need for treatment versus not exposing them to treatment that can cause toxicities, if we know that it ultimately doesn’t make them live longer.

But, of course, we want to both treat patients who need disease treatment either for symptoms or for things that are going on by the size of their lymph nodes. So when patients have low blood counts, when they have symptomatic lymph nodes, when they have lymph nodes that are potentially causing a problem to an organ, or we foresee that it could cause a problem to an organ, when they have certain burdens of disease or when they have enough and large lymph nodes that we think that there’s going to be a problem in the near future without treating is when we decide to initiate that treatment.

Lisa Hatfield:

So when you do have patients going through therapy, what are the typical side effects? And how do you help them manage those side effects of treatment?

Dr. Kami Maddocks:

Yeah, that’s a great question, and it’s very dependent, because we have so many different treatments now. It’s very dependent on the treatments that the patient’s getting. So things like single-agent antibody therapy with single-agent rituximab, most of the time, the biggest risk of that is the first time a patient can get it, they can have an infusion reaction. That’s managed as it’s happening. And then they tolerate that, in general, fairly well. That does wipe out the lymphocytes, as most of the treatments do, and puts patients at increased risk of infections, particularly viral infections for a period of time.

Chemotherapy, the most common chemo that we give for follicular lymphoma, I would say nausea, fatigue, and an increased risk of infection are kind of the bigger things. Bendamustine (Treanda) is a commonly used chemotherapy for follicular lymphoma, and that’s some of the big side effects from that.

Lenalidomide, the oral pill, so cytopenias infection, GI toxicity and rash are potentially the more common side effects of that. Less common, but we’re always concerned about blood clots, so most patients will take either an aspirin or a blood thinner, depending on their clot history when they’re on lenalidomide. The bispecific antibodies have a particular risk called cytokine release syndrome, so that immune systems activated, but it can almost get overactivated.

The most common symptom of that is fever, and so patients are counseled very closely on that. But activation of the immune system with that fever can also include changes in blood pressure or the need for some oxygen. Some of the CAR T-cell therapy has the same risk of the cytokine release, also has potential neuro side effects. And then longer term is just how long the patients’ immune systems take to recover. There can be risk for infections.

Lisa Hatfield:

Okay, thank you for that information, that overview. That’s great information for patients to have. So regarding clinical trials right now, are there any clinical trials that you are conducting or that you’re particularly excited about for patients that they might want to ask their providers about?

Dr. Kami Maddocks:

Yes, so we’re also looking at opening a trial for frontline follicular lymphoma that looks at the use of bispecific antibodies. So I think that’s very exciting, because in general, it’s a well-tolerated therapy. And I think if it gives us a chance to produce very good outcomes, but without the toxicity of chemotherapy in the frontline setting, that to me is super exciting for patients. We’re also looking at different bispecific antibodies. So they currently approved one target CD20. We have a CD19-targeted bispecific antibody that I also think is exciting to look at the potential for different targets because then once a patient has had one, you’re targeting something different, and the thought is that they might still be able to respond to a different one.

Lisa Hatfield: Yeah. So with bispecifics then, is that continuous therapy, or is that limited duration therapy?

Dr. Kami Maddocks:

It actually depends on the bispecific. So in follicular right now, the one approved is for a limited duration. When you look at a few of the others that have been approved and other lymphomas that are being studied in follicular lymphoma, there’s a little bit of a variation between continued treatment and limited-duration therapy. I think what’s exciting about a lot of the combination studies is they are more looking at a defined period of time with the combinations.

Lisa Hatfield: Which I’m sure a lot of patients love to hear that. Limited duration, there’s an end to this possibly, so yeah. 

Dr. Kami Maddocks:

Yeah. Nobody wants to be on treatment forever. 

Lisa Hatfield:

That is true. Yeah. Well, thank you so much for that important overview, Dr. Maddocks. It’s that time where we answer questions that we’ve received from you in the audience. Remember, as patients, we should always feel empowered to ask our healthcare providers any and all questions we might have about our treatment and prognosis. Please remember, this program is not a substitute for medical care. Always consult with your own medical team.

So we have a patient who is asking, “What is the recommended frequency and length of imaging PET-CT as a diagnostic tool?” And I wonder if it might be helpful, since we have a broad range of…our audience kind of runs the gamut of newly diagnosed to people who are in remission, people in watch and wait, maybe you can explain the frequency and length of imaging for those who are watching and waiting, and also for those who are maybe in remission, and those who are currently in active treatment.

Dr. Kami Maddocks:

Yeah, so I think this is a great question. I think the important thing about PET scans is to recognize where and when they have a role in follicular lymphoma, because they’re not used as monitoring tools in follicular lymphoma long term in either watch and wait, typically, or in patients who’ve had treatment. So follicular lymphoma, when patients have a diagnosis, we like to get a PET scan, because it helps us stage the follicular lymphoma a little bit better than just generalized CT scans. When patients are being monitored and they have a change in symptoms, a change on maybe routine CT scans and their physical exam in their labs, then you may want a PET scan. We always want to get one before a patient requires treatment, and then after a patient has treatment to help determine the response by PET scan.

As far as monitoring in patients who are on watch and wait or monitoring in a patient who’s received treatment, routine PET imaging is actually not recommended. It’s not recommended by the guidelines. And honestly, they’re not usually approved by insurance for routine monitoring, because they’re not recommended. So what is recommended is seeing your physician, usually at a three to six-month window, depending on where you are in your journey. And then usually, for routine monitoring, CT scans are done. If somebody’s in watch and wait, oftentimes they might initially be done at three months, then six months, then even yearly, and same with after treatment.

Lisa Hatfield:

All right, thank you. So another person is asking, “How long does it take for the immune system to really start bouncing back after follicular lymphoma treatment? And what blood test results indicate a weakening immune system?”

Dr. Kami Maddocks

Yeah, so this is a great question. [chuckle] It also can be a complicated question with many different answers. So one, it can depend on the treatment that a patient receives. Two, it can actually depend on their different parts to the immune system. So different parts of the immune system can recover at different time periods from treatment. So acutely, our neutrophils are something that often gets…they’re bacteria infection fighting cells. Those are the cells that during chemotherapy, when that count gets low and patients are counseled on if you have a fever during your treatment, you need to be evaluated and be seen because if you have an infection and a fever during chemo or some of these treatments, your blood counts are low, you might need to be in the hospital on IV antibiotics.

So those neutrophil part of it are usually quicker to recover, so they drop with treatment and then recover pretty quickly with each cycle, including after an ended treatment cycle. Sometimes when patients have been treated with several different therapies, it can be harder for those cells to recover. They can stay lower for longer. Then there’s a component of the immune system, so we are ripping out the lymphocytes, because that’s what the cancers have.

And so things targeted. Chemotherapy in general kills the lymphocytes but there also are targeted therapies like rituximab bispecific antibodies CAR T-cells those are particularly wiping…targeted towards proteins on the lymphocytes and wiping them out. Those can be for a more prolonged time. In general, we usually think of about a six-month period so patients can be at increased risk for viral infections in that six-month period may not respond as well to vaccines in that period.

But for some patients it takes longer and some patients recover quicker. It also can depend on where patients are at in their journey because every therapy that they’ve had can take a little bit longer to recover. The last part I’ll add is just sometimes when the lymphocytes are wiped out for a long time people’s proteins, their immunoglobulins that help fight infection get low. And so sometimes we actually will end up giving patients replacement of IVIG to help if they’re having lots of infections.

Lisa Hatfield:

All right. Thank you. Another good question, and this comes up with many blood cancers or a lot of cancers. Should patients be mindful of beauty products such as shampoos, soaps, and sunblocks when in remission for follicular lymphoma?

Dr. Kami Maddocks:

That’s another great question. I am not aware of any data connecting those specific things.I think patients definitely should be wearing sunblock, because we know that a lot of patients with blood cancers can get secondary malignancies. So being careful of being…we also know, I should say, even patients who are getting treated can have a more sensitivity to the sun. So being careful with sun precautions, either avoiding the sun or wearing sunblock, making sure you’re covered when you go outside. I’ll even say I’ve seen a few patients who during treatment have gotten bad windburns. So your skin definitely can be more sensitive when you’re receiving therapies.

Lisa Hatfield:

All right, thank you. Let’s see here. This patient is asking if you are in remission for a long period of time after follicular lymphoma treatment, can you technically be cured in some cases, or are you considered to still have the cancer?

Dr. Kami Maddocks:

So that is a great question. There’s a term that’s used in follicular lymphoma called a functional cure. So we have patients that essentially get treated, and they live long enough that they die from something else without their follicular lymphoma ever relapsing. So while we say from what we know if somebody lives long enough that this disease is likely going to relapse at some point, there are patients that will be treated, and the disease will never come back.

Lisa Hatfield:

Okay. That’s helpful, thank you. Can patients facing follicular lymphoma be considered immunocompromised if they’re in remission?

Dr. Kami Maddocks:

I think this kind of goes back to when we talked about the immune system recovery that this can be a little bit of a complicated question, because it depends a little bit on the treatment that they got, how far out from the treatment they are and how many treatments they’ve had in the past. So, in general, if I have a patient that has received therapy, their counts have recovered, they in general look like…their lab work looks like their immune system, then in general I would say that they have an immune system that’s likely similar to somebody who didn’t have the follicular lymphoma, and they’re going to be able to fight infections and respond to vaccines.

I think what we do know is sometimes when patients get rituximab maintenance or obinutuzumab (Gazyva) maintenance or some of the chemotherapies there are some patients that can have a longer time that they’re immunosuppressed. So I think this is always something that’s good to ask your doctor for. In your specific situation with the treatment you received, when do you expect to have a regularly functioning immune system?

Lisa Hatfield:

For follicular lymphoma, what are the predictors of transformation and relapse, and what symptoms should patients be looking out for and tell their doctor about?

Dr. Kami Maddocks:

Yeah, so I think this is a great question. As far as just in everybody predicting when they’re going to progress, when they’re going to relapse, we don’t actually have great ways to do that right now. One of the things that has been shown to potentially predict things is for patients who do receive treatment if they have an early relapse, that suggests that their disease is going to behave more aggressively. As far as looking for relapse, things that people want to look for, not all patients will have symptoms but certainly if patients feel any lumps or bumps if they start…I like to tell my patients if you…patients usually know if something’s wrong.

So everybody’s going to have aches and pains, everybody’s going to have the normal infections, but if you’re not feeling well significant fatigue night sweats fevers are always something that we look for but that’s not something that everybody has. New pains, not feeling well, just kind of the inability to feel like you can keep up with what you’re doing daily, those are always things that you should at least call in to see if you should be evaluated. It’s important to know that follicular lymphoma patients are followed. As I said, you are followed forever. We do also watch your blood counts to make sure that we’re not seeing changes in blood counts, changes in lactate dehydrogenase which is a non-specific marker but something that we follow in lymphoma.

Lisa Hatfield:

Okay. Thank you. And one follow-up to that question also. So are there follicular lymphoma specialists? If a patient is maybe in an area that doesn’t have a large academic center or a large cancer institution, do you recommend they see somebody who specializes in follicular lymphoma or can they see even for a consult or do you think that their local hematologist oncologist is very familiar with that themselves? Do you have recommendations?

Dr. Kami Maddocks:

Yeah, so that’s a great question. Local, I think follicular lymphoma is common enough that a lot of our general oncologists who see everything see follicular lymphoma. I think it never hurts of course to ask about clinical trials. So if that’s something that might be available. If it’s available, it might be worth going to a specialist for. If there’s concerns, I think it’s always a good idea to get a second opinion to make sure that a patient is comfortable.

I think if a patient seems to have a more aggressive behaving follicular or if they’ve had a lot of different treatments, that’s also if you’re seeing a general oncologist at a time, that it’s good to see if there are clinical trials or if a specialist has anything new or different.

Lisa Hatfield:

Okay. Thanks. So we have a person asking, “Does lymphoma recurrence always happen in an aggressive manner?”

Dr. Kami Maddocks:

That’s a great question. The answer is no on that, and in fact lymphoma recurrence doesn’t always need to be treated just because it does recur. So when you look at follicular lymphoma, there are patients who are in a watch-and-wait period. When they’re diagnosed, they’ll eventually progress to requiring treatment or most…well, there are patients who might not. Once they require treatment, they get a time period without…most of them will get a time period without disease.

There are patients who will…that you’ll find lymph nodes growing on CT scans maybe that you’re doing monitoring for, but the patient will otherwise feel well. They won’t have, necessarily, very big lymph nodes. Their blood counts will be okay and you may say, okay, just like you had watch-and-wait to start with, we’re going to watch and wait right now with this relapse, because you don’t have any indications that are saying we need to treat this.

And again that doesn’t necessarily make our patient live longer. So you want to balance their quality of life and toxicities of treatment. There are patients who will…when they relapse, they will have indications for treatments, and then there are patients who will potentially have more aggressive relapses and be very symptomatic or have larger lymph nodes.

Lisa Hatfield:

Okay. All right. So one person says, “I’m currently in remission, what can I expect in my future? How long does remission last? And is treatment after remission the same as initial treatment?”

Dr. Kami Maddocks:

So that is very dependent on what a patient receives. So there are different kind…of a lot of our treatments we look at median times. When patients have relapse, that can be a little bit different for single agent antibody therapy versus antibody in combination with chemoimmunotherapy for how long that treatment remission lasts.

As far as we don’t typically reuse a treatment once we have used it before, although there is data in follicular lymphoma when patients receive single agent antibody. So rituximab alone, if they do well with that single agent immunotherapy for a long period, they may receive re-treatment with just that so long as they don’t have disease that requires more aggressive treatment.

Lisa Hatfield:

Okay. So is that more likely to happen then if a patient maybe wasn’t refractory to it, if they just stopped using it for some reason? Would that be more common for that to happen to go back on that same drug?

Dr. Kami Maddocks:

So with rituximab, we use it alone and in combination. So there are some patients that don’t necessarily have what we call a large tumor, and they don’t have a lot of lymph nodes or they don’t have large lymph nodes but they might be symptomatic from them or the location might be problematic. And so once these lymph nodes get a certain size, they usually don’t have as good of a response to single agent antibody therapy. But there are patients who have small lymph nodes that aren’t as big but again are causing a problem that can get completely…you give a short course of the rituximab, and it can last for a very long time and then you would consider again using a short course of that rituximab.

The chemotherapies we have, we don’t reuse chemotherapy, for the most part. Some of that, for a while, there was bendamustine if patients got five, six, 10-year remissions out of it. Sometimes they would re-get that chemotherapy. But I think we’ve just seen so many newer therapies approved in the last five six years. Like the bispecifics, the EZH2 inhibitors, lenalidomide, CAR T, we had different PI3K inhibitors available for a while. And so I think it was just that you had the ability to offer a patient something that they never had before, and that is more appealing.

Lisa Hatfield:

Okay. Thank you. So you spoke a little bit about IVIG infusions before and this person is saying that, “I’m having to do IVIG infusions, which started years after my treatment due to my IgG numbers being low. Are nausea and headache side effects common?”

Dr. Kami Maddocks:

Yeah, so some patients can have nausea, headache, myalgia, body aches, some get fevers and some infusion reactions. For some patients, they can have that from the start, some patients can develop it. That’s always a good thing to talk to your doctor about. There are different products for IVIG, and sometimes patients are able to switch products. I will say IVIG can be very insurance-dependent, so it’s also sometimes what…the formulation that insurance…an individual’s insurance covers. But yes, these are side effects, they’re worth, if they’re getting worse or lasting a long time, making sure that it’s discussed with the physician prescribing it.

Lisa Hatfield:

Okay. All right. One person is saying, “I’m in watch and wait currently. Is it possible that I’ll never need treatment or how long do you wait and what am I waiting for?”

Dr. Kami Maddocks:

That is a great question. There are patients in watch and wait who will never require treatment. Watching and waiting, we’re watching blood counts, watching the size of lymph nodes. So things that we’re watching for and you’re watching for are changes in lymph nodes size, so are they growing? Are they becoming more symptomatic? Is there a rapid change in them? Are we seeing a change in the blood counts? Are patients starting to have a drop in their blood counts which can happen if somebody’s spleen is getting bigger if they have lymphoma in their bone marrow and that’s progressing, watching for if the lymph nodes are causing a problem, you notice somebody have one in a location like the neck that’s starting to make swallowing difficult or changes in voice, that’s something you want to treat. And then there’s something called B symptoms that we watch for. So if the patient had night sweats…

 …night sweats are like drenching night sweats, soak the bed, have to change clothes potentially sheets, fevers, so daily fevers that occur, or significant or rapid weight loss for no reason.  All those are kinds of things that we want people to watch for. And we discussed a little bit too if patients start having extreme fatigue, not feeling well, not being able to eat, not having appetites if they have a new pain. And again everybody can have aches and pains. But if you’re having pain that’s not going away or some sort of symptom that’s not improving, those are all things we want to definitely have checked out.

Lisa Hatfield:

Okay. Thank you. I imagine with some of your patients in that mode, there’s what I call the mental gymnastics of thinking, okay, I have this cancer, but I can’t do anything about it, and these symptoms are really vague that come up. So do you allow your patients just to contact you if they’re saying, “I think I have these symptoms, I’m nervous about this.” Can they come in and have a visit with you or contact you at any time?

Dr. Kami Maddocks:

Oh, yes. So we have a 24-hour triage line. I recommend that if patients have a question or concern, it’s better to ask us because if we don’t know about it, we can’t help is the first thing. Usually, we talk to the patient and say, okay, how long has this been going on and see if it’s a red flag like you need to come in right now or is this something that maybe we might recommend getting a set of labs to look at certain labs to see if they’ve changed at all. We might say okay this seems like something we should actually see you for, but I want CT scans too so let’s order them so I can have that information when you see me.

So, yeah, I think people should always call with any signs, symptoms, concerns, and then it can be addressed. Now, there are some things that we might say, okay, we think based on everything that new cough is probably more likely a respiratory infection. It’s okay to see your PCP, but we also go through that as well. So yes, I think it’s always best to check in and not let something go.

Lisa Hatfield:

Okay. Thank you. I’m guessing that’s challenging for some of those people in that mode, just thinking, well, I’m just waiting here, so that’s got to be a little bit more challenging.

Dr. Kami Maddocks:

I think you’re absolutely right. And sometimes there’s a benefit to…certainly like rituximab therapy when there is a disease there, and it is a challenge to think that it’s not being treated.

Lisa Hatfield:

Okay. Thank you. This is I guess the last or second to the last question we have. Dr. Maddocks, can you speak to maintenance therapy and monitoring and follicular lymphoma, and what signs of infection should patients and care partners be aware of during treatment?

Dr. Kami Maddocks:

Yeah, so maintenance therapy, in follicular lymphoma is something, so maintenance antibody therapy after initial chemo…usually, chemoimmunotherapy is something that’s been studied that’s shown in some patients to provide a benefit as far as keeping disease away longer and a remission longer. But then it’s also been shown to be associated with a higher risk of infection, because you’re keeping those lymphocytes wiped out, particularly when it’s given as maintenance after certain chemotherapies in addition to the immunotherapy. So it can be a balance. I think maintenance isn’t something that every follicular lymphoma patient gets, but it’s something also that is used.

So that’s the first thing in discussion with your doctor, is this something that maintenance is recommended? Why or why not? Then watching during maintenance usually if people start to have more infections, which are oftentimes sinus respiratory infections, then we’re thinking about, okay, is this somebody that has low immunoglobulins? Do we need to check those? Are we worried about them? Needing to stop maintenance, potentially needing IVIG.

Lisa Hatfield:

Okay. Thank you. And then this is a Lisa question, “Do you know if there’s any data to suggest that the follicular lymphoma or any type of non-Hodgkin’s lymphoma has a familial or hereditary component?”

Dr. Kami Maddocks:

So there are very small number of…in non-Hodgkin’s lymphoma, there are some small familial components. Unlike, however, say breast cancer where there’s specific genes to test for, we don’t have that as a screening here in non-Hodgkin’s lymphoma.

Lisa Hatfield:

Dr. Maddocks, thank you so much for being part of this Patient Empowerment Network START HERE program. It’s these conversations that help patients truly empower themselves along their treatment journey. And on behalf of patients like myself and those watching, thank you very much, Dr. Maddocks.

Dr. Kami Maddocks:

Lisa, thank you so much for having me. It’s been a great conversation and hopefully it can help some people.

Lisa Hatfield:

I hope so too. I’m Lisa Hatfield. Thank you for joining this Patient Empowerment Network program.


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START HERE Follicular Lymphoma Resource Guide 2 en Español

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Follicular Lymphoma Disease Transformation and Secondary Cancer Risk

Follicular Lymphoma Disease Transformation and Secondary Cancer Risk from Patient Empowerment Network on Vimeo.

Follicular lymphoma disease transformation and second cancer are risks, but how commonly do they occur? Expert Dr. Sameh Gaballa explains the incidence rate of disease transformation, symptoms and common treatment of aggressive disease, and risks for second malignancies.

Dr. Sameh Gaballa is a hematologist/oncologist specializing in treating lymphoid malignancies from Moffitt Cancer Center. Learn more about Dr. Gaballa.

See More from START HERE Follicular Lymphoma

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Transcript:

Lisa Hatfield:

Is it common for follicular lymphoma to transform into a more aggressive type of lymphoma? And how would that change a treatment plan? And maybe how common is it for that to happen?

Dr. Sameh Gaballa:

There’s about a 2 to 3 percent chance per year that the slow-growing lymphoma can transform to an aggressive lymphoma. That, if it does transform, I mean we talked about the symptoms and signs, you get sick quickly, rapidly enlarging lymph nodes, loss of weight, loss of appetite, drenching night sweats. No, a transformation, typically we would do a PET scan, see what’s the most active lymph node, try to get a biopsy from that and confirm there is a large cell transformation.

Now, that’s a completely different disease, it needs to be treated completely differently, typically with chemoimmunotherapy. Something like R-CHOP, for example, is one of the most common regimens we use in this scenario. And the goal of treatment here is to try to get rid of the aggressive lymphoma component here so that it does not recur again. I mentioned it’s about a 2 to 3 percent per year, but it depends on how long the patient lives. So if they live many, many, many decades, their lifetime risk is anywhere between 20 to 30 percent max during their lifetime.

Lisa Hatfield:

And as a blood cancer patient myself, this is a great question this patient is asking, “Is there a risk of secondary cancers after receiving treatment for follicular lymphoma?”

Dr. Sameh Gaballa:

So that’s always a concern, and it depends on what treatment they had. So chemotherapy that can potentially damage DNA can lead to second malignancies, including things like acute leukemia. Luckily, that’s not a high risk. That’s a rare side effect from some of those chemotherapies. Some of the pills can do that as well. Something like lenalidomide (Revlimid) can sometimes have second malignancies. But we’re talking about rare incidences, and the benefits usually would outweigh the risks. But it’s not with all treatments, meaning some of the other immune therapies that do not involve chemotherapy would not typically be associated with some of those second malignancies. So it just really depends on what exactly the treatment you’re getting.  


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Relapsed/Refractory Follicular Lymphoma Treatments and Bispecific Antibodies

Relapsed/Refractory Follicular Lymphoma Treatments and Bispecific Antibodies from Patient Empowerment Network on Vimeo.

What can relapsed/refractory follicular lymphoma patients expect for current and future treatment options? Expert Dr. Sameh Gaballa explains what treatments are currently available and ones that are being studied for the future.

Dr. Sameh Gaballa is a hematologist/oncologist specializing in treating lymphoid malignancies from Moffitt Cancer Center. Learn more about Dr. Gaballa.

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Transcript:

Lisa Hatfield:

Another patient is asking if you can speak to emerging treatment options for patients with relapsed/refractory follicular lymphoma?

Dr. Sameh Gaballa:

Yeah. So the field of follicular lymphoma is changing rapidly. I always tell patients that sometimes the best treatment is actually on a clinical trial because those are going to be the next generation of treatments that are going to get approved in the next few years. But right now we have the most effective therapy really is CAR T-cell therapy. CAR T-cell therapy by far is the most effective treatment we have at this time. It’s approved for patients who have had two or more lines of prior therapies. We also are investigating this. I actually have a trial here at Moffitt where we’re looking at CAR T-cell therapy as early as in the second line, in patients who have what we call the high-risk ones, the POD24. So a patient with POD24 follicular lymphoma relapsed in less than two years. We have a trial to investigate the role of CAR T-cell therapy in this setting. The other very promising group of treatments, again, is bispecific antibodies, again, currently approved in the third line, mosunetuzumab-axgb (Lunsumio).

But there are others coming up and have data on epcoritamab-bysp (Epkinly), as well as a lot of other bispecifics, as well as combinations. I mean, epcoritamab-bysp has also data presented with combination with lenalidomide. And right now, the follow-up duration is not very long, but so far, it looks extremely promising with very high response rates. So those also might be coming very soon. And, of course, once something works in the relapsed/refractory setting, we start looking at earlier lines of therapy. And actually, we’re now looking at trials in the first-line setting with some of these agents as well. Tazemetostat (Tazverik) is a pill. It’s also approved in the third-line setting, but we’re also investigating it. We have a trial here where we’re looking at combining it with standard rituximab (Rituxan), lenalidomide (Revlimid), so tazemetostat plus rituximab, lenalidomide as early as in the second line. So that also is interesting. And as I mentioned before, BTK inhibitors currently being looked at in trials might also have a role in follicular lymphoma very soon.

Lisa Hatfield:

And this patient is asking about the significance of bispecific antibody treatment. And you touched on that a little bit. It looks like she’s also asking if there are specific genetic or molecular markers that can predict a patient’s response. And if I try to translate that, maybe she might be asking about targeted therapy.

Dr. Sameh Gaballa:

Yeah, so bispecific antibodies and CAR T-cell therapy, they target something called CD, either CD19 or CD20, and that’s almost universally expressed on B cells. So most of your follicular lymphoma patients are going to be expressing CD19 or CD20. Tazemetostat is the pill that I talked about. It inhibits an enzyme called EZH2. Some patients have an EZH2 mutation where it seems to work very well. However, tazemetostat also works in patients who don’t have that mutation. So that’s why it’s not very important to check for the mutation.

It seems maybe it works better in patients who do have the mutation, but it does work as well in patients who do not have that mutation. So unlike other malignancies and other cancers, biomarkers are not yet driving a lot of our treatment decisions in follicular lymphoma as of right now.

Lisa Hatfield:

How exactly do bispecific antibodies engage the patient’s immune system to target and eliminate follicular lymphoma cells?

Dr. Sameh Gaballa:

So bispecific antibodies are a very interesting class of medicines. It’s an antibody that has two ends to it. So one end would target the patient’s own immune cells, meaning that they would attach the antibody to the patient’s own immune cell and then the other end of the antibody engages the cancer cell. So it’s basically hand-holding the patient’s own immune system to go and kill the cancer cell. And this is not just in lymphoma. It’s looked at in multiple myeloma as well, approved therapies there. And a lot of other cancers, we have bispecific antibodies being developed in clinical trials right now. 


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How Can Follicular Lymphoma Treatment Side Effects Be Reduced?

How Can Follicular Lymphoma Treatment Side Effects Be Reduced? from Patient Empowerment Network on Vimeo.

Follicular lymphoma patients may experience treatment side effects, but how can they be minimized? Expert Dr. Sameh Gaballa shares diet and lifestyle advice to help reduce the impact of treatment side effects.

Dr. Sameh Gaballa is a hematologist/oncologist specializing in treating lymphoid malignancies from Moffitt Cancer Center. Learn more about Dr. Gaballa.

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Transcript:

Lisa Hatfield:

We have another question about treatment profiles, “What can I do to reduce side effects during active treatment?”

Dr. Sameh Gaballa:

So it depends on what the treatment that you’re getting. If it’s immune therapy, like rituximab (Rituxan) alone, those typically don’t really have a lot of side effects. I mean, sometimes with the first one or two treatments, you might get an allergic reaction, an infusion allergic reaction, which is very common, but subsequently it shouldn’t really cause a lot of side effects.

dIf the patient is getting chemotherapy, well, it depends on which chemotherapy they’re getting. But in general, it’s always good to stay hydrated and to stay physically active. So if the patient goes in with a healthy body, well-hydrated, you eat fresh fruits and vegetables, walking 30 to 60 minutes a day, your body is going to handle the side effects much better than if you’re going in, you’re very weak, and your general health is not adequate.


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Understanding Follicular Lymphoma Disease Progression Symptoms and Monitoring

Understanding Follicular Lymphoma Disease Progression Symptoms and Monitoring from Patient Empowerment Network on Vimeo.

How are follicular lymphoma symptoms and disease progression monitored? Expert Dr. Sameh Gaballa explains follicular lymphoma disease transformation, symptoms to be on the lookout for, and frequency of monitoring during watch and wait.

Dr. Sameh Gaballa is a hematologist/oncologist specializing in treating lymphoid malignancies from Moffitt Cancer Center. Learn more about Dr. Gaballa.

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Transcript:

Lisa Hatfield:

Although follicular lymphoma is a slow-growing cancer, can you speak to the signs that the disease is progressing in the body, what signs that patients might want to look out for?

Dr. Sameh Gaballa:

Yeah, absolutely. So, typically we educate the patients to there are some red flags to look out for, not just for progression,but also for another condition called disease transformation. So, follicular lymphoma does have a, there is a possibility that it can transform from a slow-growing lymphoma to an aggressive lymphoma. Now, this happens at a rate of about maybe 2 to 3 percent per year, but it’s a cumulative risk, so meaning if a patient lives many, many decades, their lifetime risk can be up to as high as 20, 25 percent, 30 percent, depending on the different literature, so there is a chance that these slow-growing lymphomas can transform to an aggressive lymphoma.

And when they do know this, there’s no watch and wait for transformed disease. It has to be treated with chemo immunotherapy because the goal of treatment then is to try to get rid of the aggressive component. What are the signs and symptoms to suggest that you might have transformed disease? This is not something that the patient would typically need to look out for. I tell my patients that, “You don’t need to see, do I have transformed disease or not. This is going to come, and you’re going to know when you have transformed disease. Extreme fatigue, drenching night sweats, the fever sometimes that are not going away.”

The patient might have pain if the lymph node is pressing on some important structure. They may have loss of appetite, loss of weight. So again, something that dramatically happens quickly over a few weeks of time. So if the patient feels sick for one reason or another and they’re not getting better, it can all happen within a few weeks’ time frame. This is the time to get checked early on and go see your oncologist, because then we might need to investigate if there is any potential for transformation. So that’s issue number one.

Issue number two is, which is the much more common scenario, which is the follicular lymphoma is slowly progressing. How would you know? I mean, if you notice a lymph node that in your neck or under the armpits or the groin areas, if they’re growing, then that needs to be evaluated. I mean the patients should expect that those will be growing, they will grow. But they grow over months and years. They don’t grow over weeks.

So anytime you kind of are unsure, if you feel that it’s growing faster than usual, this is, again, something to look out for. And then the B symptoms that I mentioned. So like the sweats, the fevers, the weight, loss of weight, loss of appetite, these are also sometimes things to look out for. Not necessarily, they don’t always mean that it’s transformed disease. It can also be that the follicular lymphoma is also progressing and might need to be treated as well.

Lisa Hatfield:

And then just a quick follow-up to that question. So a patient is watching out for these red flags, but are they going through any kind of regular monitoring in your office? Are you meeting with them on a regular basis? And how frequent might that be for a follicular lymphoma patient who’s watching and waiting?

Dr. Sameh Gaballa:

Yeah. So how does watch and wait look? So, and I tell patients always watch and wait does not mean ignore. Watch and wait means that we’re monitoring the disease, we’re looking at it. How do we do that? So typically we would see the patient maybe every three to six months. And then depending on how do we, when we get a sense or tempo of how their disease is progressing, then we’ll know how often we need to see them. I’ve had, I still have patients where I’m seeing them every three months. And I also have some patients where the disease has been stable for years, I only see them once a year. In terms of imaging, that’s also sometimes an area of controversy. Typically, initially for the first maybe year or two years, I do like a scan, like a CT scan every six months, just to get a sense of how quick or how slow the disease is progressing. If there’s absolutely no change at all, then sometimes we either don’t do scans and just go by the patient’s symptoms and blood work and physical exam, or we do maybe once a year scan but not more than that. So this is how we would monitor the patients in a watch-and-wait approach.


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Newly Diagnosed With Follicular Lymphoma? Start Here

Newly Diagnosed with Follicular Lymphoma? Start Here from Patient Empowerment Network on Vimeo.

How are follicular lymphoma treatment options commonly explained to patients? Expert Dr. Sameh Gaballa shares how he walks patients through treatment options, POD24 and FLIPI tests that help guide treatment options, and follicular lymphoma staging.

Dr. Sameh Gaballa is a hematologist/oncologist specializing in treating lymphoid malignancies from Moffitt Cancer Center. Learn more about Dr. Gaballa.

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Transcript:

Lisa Hatfield:

So, Dr. Gaballa, let’s start here. How do you explain follicular lymphoma treatment options and prognosis to your newly diagnosed patients? And what does shared decision-making look like in your office?

Dr. Sameh Gaballa:

Oh, absolutely. So follicular lymphoma, you really have to explain to the patient what, how are we coming to the recommendation that we’re currently giving. So if we think this is, this patient is a good candidate for a watch-and-wait approach, for example, we really have to walk them through why that really is the best option and not why should we jump on treatments and vice versa, if we think this patient needs to be treated, how do we really…the patient really has to understand all the other treatment options and why this needs to be treated. Because a lot of patients initially, sometimes when you present them with a watch-and-wait approach, if they don’t know all the background, they might not feel very comfortable because they might think, “Well, I have this cancer in me, and we’re not doing anything about it, and that doesn’t really sound too…something I should be doing.”

But then when you explain to them, “Well, you see, you don’t have a lot of disease, those studies have already been done in the past where patients who were treated or not treated, the survival was the same, so there, you might get side effects from the treatment, but not necessarily have benefits. And in the future, should this need to be treated, we have a lot of things to do.” So, really, so this is kind of the shared decision portion where you just have to walk the patients through why that will be the best situation. There is data with single-agent rituximab (Rituxan), even in patients who are asymptomatic, and we have the UK data, and that’s an option.

And that is also offered to some of the patients, even if they’re not symptomatic and they don’t have a lot of disease, if that’s what really the patient wants, if they’re not really comfortable with a watch and wait. And there’s again some data to help justify that. Again, there’s no advantage in overall survival, but sometimes the patients would kind of feel more in control. They feel like, “Okay, I did something about it.” So that’s the shared approach.

In terms of your other question about prognosis, unfortunately that’s an area of an unmet need. I mean, we have some tools to help us differentiate follicular lymphoma patients from each other, which patient is high-risk, meaning those are the patients who might relapse quickly, or they might not respond well to treatments. Unfortunately, we don’t have great tools. We have something called a FLIPI score, which is, we use a number of parameters including clinical parameters like stage or age and some other parameters as well, and we have a scoring system. But it doesn’t 100 percent predict if this is going to be a high-risk follicular lymphoma or a low-risk.

Unfortunately, the best predictor of prognosis for follicular lymphoma, you would know about retrospectively, it’s something called POD24, progression of disease in 24 months. Meaning that if you have a patient who’s treated with chemotherapy and immune therapy, and then they go into remission, and then they relapse again in less than 24 months, progression of disease within 24 months, those are the, those represent about 20 percent of follicular   lymphoma patients, and those represent a high-risk group of patients. That’s the best tool that we have. But unfortunately, if you’re diagnosed today, you’re not going to know if you’re in this group or not until you actually need to be treated and not just treated with immune therapy.

It has to be with chemotherapy as well. And then if you relapse within two years, then we know that this is a high-risk entity. There is genetic testing, there is something called a FLIPI-m7 scoring system. But again, these tools are not great to tease out the low risk from the high-risk follicular lymphoma patients. But 80 percent of patients who are not going to be POD24, meaning that they get treated, they’re in remission for two years or more, and actually those patients have very similar survival to the general population. So, yeah, so a lot of times we don’t know right away, but we do have some tools to kind of give us an idea.

Lisa Hatfield:

Great. Thank you for that information. It’s kind of hard for cancer patients to only know what their prognosis is retrospectively, but that’s a great explanation. Thank you. Okay, another patient question, “How does the staging of follicular lymphoma impact treatment choices?”

Dr. Sameh Gaballa:

Yeah, so as you saw, I didn’t really stress too much about staging, because it’s a blood disease. So the vast majority of patients are going to be what we call stage III to IV disease. So, obviously when you see a patient if if they, they might think that, “Oh my God, I have a stage III to IV cancer,” because that’s really what they’re familiar with. But follicular lymphoma is a blood disease, so by default it’s going to be in a lot of lymph nodes, it might be in the bone marrow as well, but stage III to IV disease follicular lymphoma doesn’t, that does not mean that this is a terminal cancer. Patients could live completely in normal life, even with a stage III to IV follicular lymphoma. This is not like a breast cancer or colon cancer where stage is everything.

But why do we have a staging system? Obviously, there’s a need to have staging system for all cancers, but clinically, the only time it makes a difference is there’s a small group of patients who have a truly stage I or II disease, meaning just one group of lymph nodes on one side of the diaphragm that may fit within one radiation field. So if you have someone who’s just coming in with one or a few groups of lymph nodes all in one place, we call that a stage I or II follicular lymphoma, not common, because again, most patients are stage III to IV. The only difference there is you can potentially offer those patients radiation therapy if it’s truly localized, but then you would need to do a bone marrow biopsy and confirm that it’s not in the bone marrow.

And if it is localized within one radiation field, that can be offered and we can sometimes give after radiation therapy, either observe it or consider giving rituximab afterwards. But that’s the only time where we’re going to mention staging, again, uncommon because most, the vast majority of patients are going to be stage III to IV. So why would we do that? Why would we irradiate if it’s only one group of lymph nodes? Because there’s about, I mean, if you irradiated, those lymph nodes will go away, but there’s about maybe a, it’s different. The number is different between studies, but about maybe a third of patients, if you irradiate that group of lymph nodes or one lymph node, it actually might not come again in the future. So you might have very long remissions/possible cure if you…and this is the only situation where we would consider treating someone who does not have symptoms, because you could have very long remissions with radiation. 


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What Follicular Lymphoma Treatments Are Available?

What Follicular Lymphoma Treatments Are Available? from Patient Empowerment Network on Vimeo.

Follicular lymphoma patients have different treatment options, but what should patients know about them? Expert Dr. Sameh Gaballa shares an overview of available treatment options and research results of treatment versus watch and wait. 

Dr. Sameh Gaballa is a hematologist/oncologist specializing in treating lymphoid malignancies from Moffitt Cancer Center. Learn more about Dr. Gaballa.

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Transcript:

Lisa Hatfield:

So, can you speak to the novel pathways and targets that are currently under investigation in follicular lymphoma? And what are the most important highlights to point out to patients and families?

Dr. Sameh Gaballa: 

Yeah, absolutely. So you have to remember, number one, not all patients with follicular lymphoma have to be treated. A fair number of patients can be safely observed initially, because the…so when I was talking about the types of lymphoma, so the aggressive lymphomas, those ones are treatable, but curable, meaning you treat it, goes away, good chance that it goes away and does not come back.

Whereas follicular lymphoma, those are slow-growing lymphomas. They may or may not cause problems. The treatment though, they’re very treatable. There are a lot of treatments available, but the thing is they’re not curable, meaning that they go into remission, they could stay in remission for years, but then eventually they would come back again. So you have to remember that because of that, large trials were done previously where patients who had no symptoms and not a lot of disease, they were randomized, half would get treated.

The other half were on a watch and wait. And the patients who, survival is exactly the same in both groups, there was not really any advantage to early treatment versus treatment as if there’s a reason in the future. And we typically have some indications where we decide, okay, well, it’s time to treat. And those basically have to do if the lymph nodes are big enough or they’re close to an important structure and we don’t want them to grow more and maybe press on an important structure, or if they’re causing some kind of symptom or they’re causing anemia or low platelets. I mean, there has to be one, because there has to be one reason for why you’re trying to treat that patient, because you’re basically trying to fix a problem.

So if there’s no problem initially, it doesn’t make sense to treat it. Now, there are lots of available treatments, it could be only immune therapy, something like rituximab (Rituxan)  or obinutuzumab (Gazyva); these are antibody treatments. There are also combinations with chemotherapies, like bendamustine (Treanda), rituximab for if we have relatively bulky disease. There are options as well that do not involve chemotherapy.

So something like pills like lenalidomide (Revlimid) combined with rituximab, those are also options that can be used in follicular lymphoma. But over the last few years, there have been a lot of changes in follicular lymphoma and a lot of novel targets and a lot of novel treatments available. So, for example, a few years ago now, we’ve had CAR T-cell therapy approved. Right now, we have two products approved, axi-cel and tisagenlecleucel (Kymriah). There’s also data that was presented with liso-cel in follicular lymphoma. So hopefully we might see an approval for that as well. So that’s one class.

There’s also bispecific antibodies, and it’s very exciting times. We had the first bispecific antibody approved in the United States in December of 2022. That’s mosunetuzumab-axgb (Lunsumio). So what is a BiTE antibody? These basically are advanced types of immune therapies where you give the patient an antibody that has two ends to it, one end sticks to the cancer cell, the other end sticks to your immune cells. So it’s basically handholding your own immune cells or your own T cells to go and get attached to the cancer cell and kill it, not chemotherapy. It, of course, can have some immunological side effects like fevers or inflammation initially when it’s done, typically when in the first cycle or second cycle.

But something called cytokine release syndrome rarely can cause neurological toxicity. That’s also very transient usually, and very rare with bispecific antibodies. But those are two up and coming treatments. Right now, they’re approved in patients who’ve had relapsed/refractory disease, meaning they’ve had two or more lines of previous therapies, but they’re…we have them now in trials where we’re looking at those agents in earlier lines of therapy. There are other agents as well.

A few years ago, we had tazemetostat (Tazverik) approved, which is a pill that targets an enzyme in the cells called EZH2 and they basically, this pill tries to ask the cancer cell to differentiate, rather than get stuck and not die. So they differentiate and then they eventually die, so that’s another class of medicine. And we’ve now seen some data with BTK inhibitors. There’s been data presented from the ROSEWOOD Study with zanubrutinib plus obinutuzumab (Brukinsa plus Gazyva); it’s not yet FDA-approved, but the data looks interesting and certainly needs to be looked at further. 


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