Tag Archive for: follicular lymphoma treatment

Strength in Shared Decisions: Juanita’s Follicular Lymphoma Journey

Follicular lymphoma survivor Juanita was shaken with her diagnosis at age 42. Watch as she shares her story as a single mom through her cancer journey, shared decision-making, and support coordinated by a patient navigator.

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From Disbelief to Determination: My Follicular Lymphoma Journey

From Disbelief to Determination: My Follicular Lymphoma Journey

Navigating the Unknown: Roberta’s Journey to a Follicular Lymphoma Diagnosis

Navigating the Unknown: Roberta’s Journey to a Follicular Lymphoma Diagnosis

Newly Diagnosed Follicular Lymphoma and Treatment Options

Newly Diagnosed Follicular Lymphoma and Treatment Options 

Transcript:

Voiceover:

Shared decision-making (SDM) in healthcare typically begins as soon as a significant health decision needs to be made. It empowers you to take an active role in your care. Hear Juanita’s story and discover how it could inspire your own journey.

Juanita:

Hi, My name is Juanita, and I was shaken to learn of my follicular lymphoma diagnosis at age 42. Even though I felt like something was “off” in my body, I never imagined that I could have cancer. My diagnosis was only discovered after my doctor ran additional testing after she saw abnormal levels in my blood tests.

As a single mom with a young “tween” son and daughter, I had no idea how I was going to handle cancer treatment while I also had to take care of my kids.  My doctor wanted to discuss my treatment options with me. I wasn’t sure about moving forward with treatment right away, and she wanted us to make the decision as a team. I told her my concerns about also taking care of my kids, and she connected me with  a patient navigator right away. After learning about the volunteer help I could receive along with friends  who offered to help me, I told my doctor I was ready to start the treatment we discussed – radiation followed by chemotherapy. 

The patient navigator had a non-profit organization contact me, and they assigned a volunteer. The volunteer was an absolute godsend. She drove me to my appointments and also cooked meals and transported my kids from their after school sports. She also encouraged me to join an online support group, which has been incredibly helpful for me. It has been surprisingly therapeutic for me to share my cancer story. It has helped me with my journey, and I’ve also shared what I’ve learned to help others through their journeys.

I’ve now completed my rounds of radiation therapy and chemotherapy. I receive regular scans, and I’m doing well and enjoying life with my kids. I’ll be happy to keep sharing my story to help others who may be struggling with cancer. I surprised myself with my strength and am confident that others can surprise themselves too.

From Disbelief to Determination: My Follicular Lymphoma Journey

Follicular lymphoma survivor Jerome was shocked with disbelief when he received his diagnosis. Watch as he shares his experience that began as a marathon runner and through his journey with R-CHOP, shared decision-making, benefits of exercise, and support groups.

See More from START HERE Follicular Lymphoma

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Strength in Shared Decisions: Juanita’s Follicular Lymphoma Journey

Strength in Shared Decisions: Juanita’s Follicular Lymphoma Journey

Navigating the Unknown: Roberta’s Journey to a Follicular Lymphoma Diagnosis

Navigating the Unknown: Roberta’s Journey to a Follicular Lymphoma Diagnosis

Defining Survivorship for Relapsed/Refractory Follicular Lymphoma

Defining Survivorship for Relapsed/Refractory Follicular Lymphoma 

Transcript:

Voiceover:

Shared decision-making involves collaboration between patients and healthcare providers to make decisions that align with the patient’s values, preferences, and individual circumstances.  Listen to Jerome’s journey from shattered with disbelief to being informed  and how it transformed his journey.

Jerome:

Hi, My name is Jerome, and I was shocked to my core to receive my follicular lymphoma diagnosis at age 40. I take pride in living a healthy lifestyle and running marathons on a regular basis in Colorado, so I was truly in disbelief when I received my follicular lymphoma diagnosis. The only symptom that I had along with the lump in my lymph nodes was some slight weight loss, but my diagnosis came back as follicular lymphoma after my lymph node biopsy and blood tests.

 As someone who prefers to attack challenges, I found it frustrating to have to wait a few weeks before starting treatment. After talking with my doctor, she put my worries at ease.  We then discussed my treatment options and made the shared decision that R-CHOP would be the best treatment option for me. My wife was in complete agreement about the treatment decision and has been an incredible support for not only me but for our two teenage sons.

 And some patients in my online support group have been in disbelief about my upcoming marathon plans. Even during my toughest days, I always made efforts to at least do some walking down the hallway. It may sound simple, but I feel that it made a measurable impact on my quality of life during and following treatment. Even in small amounts, I feel that exercise helps cancer patients in their recovery. My doctor agrees with this theory as well, as she’s witnessed the difference that physical activity has made with her patients’ recovery times.

To other patients and caregivers out there, I hope sharing my story helps you or your loved one on your journey. I’ve educated myself about follicular lymphoma treatments, and the future of care looks bright. Even though my journey began with being shattered with disbelief, I now feel whole and hopeful for all patients facing  follicular lymphoma.

What Are Common Follicular Lymphoma Treatment Side Effects?

What might follicular lymphoma patients experience for treatment side effects? Expert Dr. Brad Kahl from Washington University School of Medicine discusses common treatment side effects that patients might experience, some methods for dealing with side effects, and other precautions to help ensure optimal patient care. 

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Defining Survivorship for Relapsed/Refractory Follicular Lymphoma

Defining Survivorship for Relapsed/Refractory Follicular Lymphoma

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Addressing Vulnerabilities in Follicular Lymphoma

Why Does Follicular Lymphoma Relapse for Some Patients?

Why Does Follicular Lymphoma Relapse for Some Patients?


Transcript:

Lisa Hatfield:

What are the common side effects of the recommended treatments in newer therapies? And a really important question. Are there long-term side effects that I should be aware of or that a patient should be aware of?

Dr. Brad Kahl:

Yeah, the side effects are going to be different for all the different new agents that I mentioned. With the bispecific monoclonal antibodies, there’s a little bit of risk for something called cytokine release syndrome. When you’re first starting on the drug, sometimes the drugs are really potent at activating the patient’s immune system. And as that immune system is getting revved up, the immune system will release chemicals or cytokines, which can give you fevers and make you feel like you have the flu. It’s just your immune system responding.

And so that’s something that we have to watch for as we’re starting a bispecific, that’s usually a short-term problem. And it’s usually pretty easily managed with steroids or other drugs that can tamp down the immune system. And then once you’re past that risk for cytokine release syndrome, the bispecifics usually go pretty smooth, but the bispecifics do deplete your body of healthy B cells in addition to the follicular lymphoma cells.

So they do weaken the patient’s immune system some, and I’d say that’s the biggest risk that we have to worry about in patients getting a lot of these different treatments is just what it does to your immune system. And so we’re always telling patients to call us if you get a fever, infections in a patient on treatment can become a big deal. And that’s why we want those phone calls so we can figure out if you need to get seen, if you need to go to an emergency room, if we need to start on broad spectrum antibiotics immediately, if we need to bring in for fancy testing, because sometimes people can get kind of oddball or rare infections. 

So infections, infections, infections are the things we worry about the most with most of the treatments that we give to people with relapsed follicular lymphoma. That’s true of the CAR T-cell products, cytokine release syndrome. We also have to worry about some neurologic toxicity that can happen if that happens, that’s going to occur while the patient’s in the hospital with us getting those treatments. But again, these drugs will deplete the immune system for months and months, maybe even a year, maybe longer. So we have to just be super careful about infections in patients getting these different treatments that I mentioned today.


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Navigating Anxiety and Stress Following Follicular Lymphoma Treatment

Navigating Anxiety and Stress Following Follicular Lymphoma Treatment from Patient Empowerment Network on Vimeo.

What are some ways for follicular lymphoma patients to cope with emotions after treatment? Cancer patient Lisa Hatfied shares coping methods and health lifestyle advice for dealing with stress and anxiety.

See More from START HERE Follicular Lymphoma

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Transcript:

Lisa Hatfield:

After you are done with your follicular lymphoma treatment (including stopping any maintenance therapy), you may feel anxiety or stress and ask yourself “Well now what?” This range of emotions is normal. One woman  shared, “After a year in remission, dealing with the aftermath of follicular lymphoma has been tough. Initially, the news of remission brought euphoria and excitement that lasted the whole day. However, soon after, I found myself feeling numb—and then grappling with guilt for feeling that way.

You may feel similar to this woman or you may feel like the other shoe is about to drop (i.e. concerned about recurrence in the future). Here are some tips to help manage this stress and anxiety: 

  • Manage your expectations. Give yourself a break and set realistic expectations. After you stop maintenance therapy, you may not feel 100% back to normal right away so give yourself grace 
  • Research has shown that fear of recurrence can be reduced when your healthcare team is able to give people statistics about curability or remission length. Ask your healthcare team if you find comfort in statistics. 
  • Talk to a counselor and seek antidepressant or anti-anxiety medications
  • Exercise and relaxation techniques like meditation and mindfulness may also help
  • Continue healthy lifestyle factors, just like you did during treatment, including good diet/nutrition, getting enough sleep, etc. 
  • Join a support group designed to help people who have completed treatment. It can be helpful to hear what other people do to manage their anxiety/stress and know you are not alone in feeling this way. 

Sources: 


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Why Communication Is So Important in Managing Follicular Lymphoma Side Effects

Why Communication Is So Important in Managing Follicular Lymphoma Side Effects from Patient Empowerment Network on Vimeo.

How can communication help in managing follicular lymphoma side effects? Cancer patient Lisa Hatfield and expert Dr. Tycel Phillips from City of Hope share advice and benefits of open communication about side effects.

See More from START HERE Follicular Lymphoma

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Transcript:

Lisa Hatfield:

Though doctors can observe some patient information in blood tests and other lab work, they  also must hear from their patients. Patients are the ones who know how you’re feeling, and this is why it’s vital for you to communicate with your doctor about any symptoms and side effects that you experience. Treatment can often be adjusted to minimize symptoms and side effects to provide patients with optimal quality of life while fighting your cancer. Listen as Dr. Tycel Phillips discusses further.

Dr. Tycel Phillips:

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. 

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.


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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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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’s New for Follicular Lymphoma Treatment News and Developments

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

What Can Follicular Lymphoma Patients Expect for PET-CT Scans

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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Follicular Lymphoma Monitoring and Maintenance: An Expert Weighs In

Follicular Lymphoma Monitoring and Maintenance: An Expert Weighs In from Patient Empowerment Network on Vimeo.

What do follicular lymphoma patients need to know about monitoring and maintenance therapy? Expert Dr. Sameh Gaballa shares research about maintenance treatment, maintenance therapy risks versus benefits, and virtual visits for consults and second opinions.

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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Follicular Lymphoma Disease Transformation and Secondary Cancer Risk

Follicular Lymphoma Disease Transformation and Secondary Cancer Risk 

How Can Follicular Lymphoma Treatment Side Effects Be Reduced?

Understanding Follicular Lymphoma Disease Progression Symptoms and Monitoring


Transcript:

Lisa Hatfield:

Can you speak to maintenance therapy and monitoring in follicular lymphoma? And what signs of infection should patients and care partners be aware of during treatment?

Dr. Sameh Gaballa:  

Yeah, so there have been randomized studies in slow-growing lymphomas that show that if you do, after you get your standard treatment for follicular lymphoma, if you do what we call a maintenance treatment, usually with rituximab, which is an immune therapy, where you do it every two to three months for about two years, we have data showing that that decreases or delays the risk of relapse. However, it doesn’t change the overall survival, meaning that it just has patients in remission longer. When their disease comes back, they just get treated again at that point, and it doesn’t really affect survival.

So it’s one of those shared decision-making with the patients. I usually go over the risks and benefits of maintenance therapy. It’s optional. It’s not a must. During COVID, we pretty much stopped all maintenance treatments, because the risks were outweighing the benefits because maintenance treatment is…will suppress the immune system more, is associated with more infections. And these infections can be anything. I mean, it could be a pneumonia, could be recurrent urinary infections. It could be any type of infection. So there’s always this risk and benefit that we have to discuss with the patient.

Lisa Hatfield:

One thing that comes up, patients, I live in a state that we don’t have a lot of specialists for my type of cancer, for myeloma. If a patient wanted to consult with you, do you see patients via Zoom? Do you do consultations or maybe, I don’t want to call it a second opinion, but a consultation virtually for patients?

Dr. Sameh Gaballa:

So COVID has changed a lot of things. And that’s one of those things that have changed the way that we work, meaning offering virtual visits. And yes, sometimes we do, someone just wants to make sure they’re on the right track. They want us to review the records, review the diagnosis. We’ll get the biopsy slides reviewed here by our pathologist. And just to go over and make sure that they’re on the right track.

So yes, we routinely do those second opinions sometimes. Obviously in-person is usually better, because then we could do our own testing, and we could also examine the patients and see how they are. But yes, a virtual option is available. There are some restrictions sometimes. We cannot now see out-of-state patients as we used to, but during COVID that was not the case. But now we would have to see patients only in our state.


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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.

See More from START HERE Follicular Lymphoma

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Follicular Lymphoma Monitoring and Maintenance: An Expert Weighs In

Follicular Lymphoma Monitoring and Maintenance: An Expert Weighs In

How Can Follicular Lymphoma Treatment Side Effects Be Reduced?

Understanding Follicular Lymphoma Disease Progression Symptoms and Monitoring


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.

See More from START HERE Follicular Lymphoma

Related Resources:

Follicular Lymphoma Monitoring and Maintenance: An Expert Weighs In

Follicular Lymphoma Monitoring and Maintenance: An Expert Weighs In

Relapsed/Refractory Follicular Lymphoma Treatments and Bispecific Antibodies

Relapsed/Refractory Follicular Lymphoma Treatments and Bispecific Antibodies

Understanding Follicular Lymphoma Disease Progression Symptoms and Monitoring


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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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.

See More from START HERE Follicular Lymphoma

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What Exactly is Follicular Lymphoma? An Expert Explains

What Exactly is Follicular Lymphoma? An Expert Explains

Follicular Lymphoma Patient Expert Q&A: Start Here

Follicular Lymphoma Patient Expert Q&A: Start Here

What Follicular Lymphoma Treatments Are Available?


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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How Is Relapsed or Transformed Follicular Lymphoma Treated?

How Is Relapsed or Transformed Follicular Lymphoma Treated? from Patient Empowerment Network on Vimeo.

Follicular lymphoma (FL) expert Dr. Jane Winter explains relapsed or transformed follicular lymphoma and outlines treatment approaches for these FL types.

Dr. Jane Winter is a hematologist and medical oncologist at Robert H. Lurie Comprehensive Cancer Center at Northwestern University. More information on Dr. Winter here.

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Follicular Lymphoma: What Treatment Options Are Available?

Follicular Lymphoma: What Treatment Options Are Available?


Transcript:

Laura Beth:

Dr. Winter, what happens if a patient’s follicular lymphoma relapses? What is the approach to treatment? 

Dr. Winter:

And so, generally, it’s probably one in five patients whose disease sort of comes back and becomes somewhat problematic requiring repeated therapies where many, many patients have a very kind of indolent course that may require treatment intermittently, but tends to be very amenable to treatment. And then the other point to be made about follicular lymphoma is indeed that a fraction of patients every year will go on to what we call transform. That means their disease acquires and changes biologically or at least a clone of their disease changes and becomes a much more aggressive process similar to a newly diagnosed diffuse large B-cell lymphoma, an aggressive lymphoma.  

And these transformations then require treatment as if they were an aggressive lymphoma. And they also, despite being somewhat frightening because of the sense of changing from a low-grade to a more aggressive process, in very many cases, these are well treated with standard, especially in patients who haven’t had prior therapy for follicular lymphoma, which is rituximab (Rituxan), these patients are well treated with our standard treatment for aggressive lymphoma Rituxan CHOP chemotherapy, and do very well. So, even though that sounds like a frightening occurrence, for the vast majority, it’s very treatable. 

And patients go into remission and stay in remission for the most part, so it’s not as frightening as it might sound. And how many patients and when do they transform? There’s lots of confusing data. Basically, there’s some data that suggests that the majority of patients transform early in the first five years, whereas other data suggests that it’s sort of every year, patients are at risk so that the longer you have follicular lymphoma, perhaps, the greater the risk overall of this kind of change in the biology. But, as I said, for a good significant number of patients, this is relatively easily treated with standard chemotherapy.   

Just another point in terms of potentially curative therapies these days, we’re afraid to use that term in follicular lymphoma because it does have this tendency to sort of keep coming back over time. So, whether any treatment is truly curative remains to be seen. Perhaps a very, very small fraction of patients might be eligible, young patients, for an allogeneic stem cell transplant from someone else. But, this is not commonly pursued these days, as well as a new therapy called CAR T-cell therapy, which is a form of immunotherapy and may indeed be curative.  

But at this point, it’s really too early to make a claim of cure with that strategy. But, a very exciting new immunotherapy as well as some other new immunotherapy is something called “bite cells,” which harness our own immune system, much like the CAR-T cells do. So, lots of new things. So, these are exciting times for us as treating physicians and hematologists, but they are exciting times for patients because we have so much to offer.  

An Expert’s Perspective on Emerging Follicular Lymphoma Research

An Expert’s Perspective on Emerging Follicular Lymphoma Research from Patient Empowerment Network on Vimeo.

What’s the latest on emerging follicular lymphoma research? Dr. Jane Winter shares how follicular lymphoma treatment has advanced and provides an overview of treatment options.

Dr. Jane Winter is a hematologist and medical oncologist at Robert H. Lurie Comprehensive Cancer Center at Northwestern University. More information on Dr. Winter here.

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Follicular Lymphoma: What Treatment Options Are Available?


Transcript:

Laura Beth:

Dr. Winter, is there emerging follicular lymphoma research that you are excited about?   

Dr. Winter:

So, first of all, I think it’s very important to underscore the fact that for a newly diagnosed patient with follicular lymphoma today, survival is measured in decades with an “S,” so, 10, 20-plus years. And that’s based on data that’s already becoming outdated such that it’s the likelihood with some of the newer treatment options is there’s never been a more exciting time, I often say, to be a hematologist because of all the exciting new tools we have to our trade.  

So, lots of new treatments. But, even with the old treatments, and I mean rituximab-based treatments, the outcome is excellent. We have new treatments. We have all kinds of new treatments these days for follicular lymphoma such that it’s a veritable buffet of treatment options to choose from. Nonetheless, often times the first treatment is just either a monoclonal antibody, meaning rituximab, an anti-CD20, which is a protein or marker on the surface of the lymphoma cell. This is immunotherapy, been around now for 30 years and approved for 22 years for the treatment of follicular lymphoma as well as other B-cell lymphomas.  

Other therapies that are typically used frontline include rituximab plus chemotherapy, most commonly a drug called bendamustine, which wasn’t always available, was something that was being developed in East Germany that came to the attention of the Europeans and North Americans only after German unification. And, this has become, along with Rituxan, one of the most commonly used first-line treatments for follicular lymphoma. Other options include a combination of Rituxan and an oral medication called lenalidomide (Revlimid), and this is given three weeks in a row out of every four weeks with Rituxan. Again, this anti-CD20 immunotherapy or antibody. 

And, it’s a very effective but requires some monitoring of blood counts and so on, so it is perhaps not as commonly used as Rituxan and bendamustine as a first-line therapy. But, there are so many additional new options that are either approved or coming along for all of our B-cell lymphomas, and they include many new what we call “targeted agents” as well as immunotherapy including a very new therapy called CAR T-cell therapy. But, one thing I just wanted to say, in addition to the very long anticipated survival of newly diagnosed patients today, it’s really only a small fraction of patients who get into trouble with follicular lymphoma, at least in the short term.  

When Is It Time to Treat Follicular Lymphoma?

When Is It Time to Treat Follicular Lymphoma? from Patient Empowerment Network on Vimeo.

What symptoms might follicular lymphoma patients experience as a trigger for treatment? Dr. Jane Winter shares insight about common symptoms that indicate treatment should begin for optimal patient care.

Dr. Jane Winter is a hematologist and medical oncologist at Robert H. Lurie Comprehensive Cancer Center at Northwestern University. More information on Dr. Winter here.

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Transcript:

Laura Beth:

Dr. Winter, what are signs that it is time to treat a patient’s follicular lymphoma? 

Dr. Winter:

Symptoms are the trigger, most often. 

Sometimes, the trigger for treatment is a big enough mass that it’s pushing on something important, for example, the ureter, which is the tube from the kidney to the bladder. And if we have a large mass that either wraps around that ureter or just pushes on it sufficiently to block drainage, it’ll result in a decline in kidney function. So, a rising creatinine may be the signal that things are progressing and it’s time for treatment. Sometimes, the follicular lymphoma involving the lining around the lung can lead to what we call a pleural effusion, fluid in that space. It’s a potential space between the lung and the chest wall.  

So, an accumulation of fluid there restricts the ability to take a deep breath, and that may be an indication for treatment, or just the overall total mass of disease is becoming such that it results in fatigue and is beginning to impair the quality of life and what we call performance status. So, those are triggers for treatment. Decline in blood counts is another. So, follicular lymphoma very commonly involves the bone marrow, and as it progresses and replaces the normal blood cells, it will result in a decline in the red cell count, the hemoglobin that carries oxygen. So, it results in tiredness or shortness of breath, or a low white count such that the numbers of infection fighting cells is compromised.  

Or also at the same time, often the platelet count. And platelets are those little flecks in the blood smear that help to clot blood and prevent bleeding. And so, as they decline, we sometimes see little red spots called petechiae on the lower extremities. But, that’s a pretty uncommon sign in follicular lymphoma. Most often, it would be just a mild anemia that flags progression and bone marrow involvement. So, all of those. So, multi-disease, disease that causes symptoms, disease that causes fluid accumulation around the lung or obstruction of some important organ. 

These are all the signs that it’s time to think about treatment.