Managing Toxicities and Access in Follicular Lymphoma Care

Follicular lymphoma care includes some powerful treatment options, but what should patients know about toxicities? Expert Dr. Kami Maddocks from The Ohio State University Wexner Medical Center discusses common toxicity side effects with specific follicular lymphoma treatments. 

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Transcript:

Lisa Hatfield:

So regarding those toxicities, like the ICANS and the CRS, is there a difference in how you treat patients? For example, if a patient might experience those side effects, are they hospitalized for that type of treatment initially, or are all of these new treatments done on an outpatient basis?

Dr. Kami Maddocks:

Yeah, that’s a great question. So the answer can be variable depending on the specific product or the center where the patient’s receiving them, and then even the disease that they’re used in. So let’s just talk about bispecific antibodies to start. So the first bispecific antibody that was approved in follicular lymphoma was mosunetuzumab-axgb (Lunsumio). There’s no required hospitalization to administer that, but there is a recommendation that if patients have signs or symptoms of cytokine release. 

So the primary symptom is fever. That’s the number one most common symptom that patients will get and how we define cytokine release. But patients can also have hypoxia or a drop in the oxygen or hypotension and a drop in their blood pressure. So if they have these, it’s generally recommended that they’re admitted for a period of observation to ensure that those toxicities don’t worsen or escalate and that they’re treated if they do.

Which treatment can include ruling out other causes? Some patients may need antibiotics if they have low blood counts and a fever. Some people will need fluids and oxygen. Then sometimes we use steroids like dexamethasone (Decadron) or even cytokine blockers to help manage those side effects, particularly if they’re what we call higher grade or more significant.

The second bispecific antibody epcoritamab-bysp (Epkinly). That was previously approved in diffuse large B-cell lymphoma and there was a recommended hospitalization with a step-up dosing for that. However, in follicular lymphoma, when they studied that, they gave an extra dose. So part of trying to prevent the cytokine release is giving a lower dose and then increasing the dose each week until you reach the maximum dose. So they added an extra kind of intermediate dosing in the follicular dosing and showed that that made a lower risk of…a lower number of patients had cytokine release. And that the majority of them had the lowest grade cytokine release.

So in follicular lymphoma, it’s actually with that increased one dose in there to get to the maximum dose. It’s actually not recommended, or it’s not required that patients are hospitalized for any of the doses. But, of course, if they would, same thing, if they would have side effects, then you would consider that. And then the same thing could be said for the CAR T-cell therapies. Some of them are given inpatient and then patients are monitored for a period of time, and then some are administered as an outpatient. And patients are seen daily for that to check on how they’re doing, monitor for side effects, have labs. And sometimes it just depends on the center administering the therapy, how they have a setup for patients to be monitored.

Lisa Hatfield:

Are these newer approved therapies, are they available at some of the smaller cancer centers, or are they only available right now at the larger cancer centers or academic centers? Then my second question is, are they limited duration therapies or like bispecific antibodies, does that just continue until disease progression?

Dr. Kami Maddocks:

Yeah, those are great questions. So in general, if you look at the combination of the obinutuzumab (Gazyva) and zanubrutinib (Brukinsa) that should be able to be administered anywhere, the therapy for the oral therapy is continued until progression. If you look at the bispecific antibodies, there’s both. There’s a time-limited therapy, and then there’s one continued until progression.

I think in general, we’ve seen that initially these have been used at larger treatment centers, but now that they’ve been approved for a while, we have seen a lot of these being used at smaller cancer centers and in the community centers. Sometimes patients may receive their initial dosing at a larger center and then transition to a local center. But I think, like I said, now, especially the one that’s been approved for a while, we’re seeing that it can be started at many places.


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Addressing Vulnerabilities in Follicular Lymphoma

What are support methods for follicular lymphoma patients with more vulnerability? Expert Dr. Brad Kahl from Washington University School of Medicine discusses approaches to follicular lymphoma care of older patients to help guard against side effects, disease complications, and infections.

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Transcript:

Lisa Hatfield:

And another question, which patients are considered the most vulnerable when it comes to follicular lymphoma and why, and what measures can be taken to better support these populations in terms of treatment and care? And I’m not sure if they’re talking about different age groups or ethnic groups or geographic groups like rural versus more urban areas, but if you can speak maybe too general terms to answer that question, that would be great.

Dr. Brad Kahl:

Yeah, right. Well, the first thing that comes to mind are older patients. Older patients are always more challenging to take through cancer therapies. The older patients are more fragile. They don’t tolerate the treatments quite as well. They don’t have the physiologic reserve. They’re more susceptible to complications and infections. So I always think when we have older patients that need treatment in follicular lymphoma, the doctor has to be extra, extra careful, sort of the Goldilocks principle.

You don’t want the treatment too hot and you don’t want it too cold, too hot, it might work great, but you might get unacceptable side effects too cold, maybe no side effects, but not enough activity against the disease. So we’re always trying to get that patient the best remission we can get them, but doing the least amount of harm along the way.

So I think that takes a little bit of art, a little bit of experience to figure out how to get your older more fragile patients through follicular lymphoma therapy. And then I think the whole idea of patients who live in rural areas, that can often be challenging too, because they may be hours and hours away from medical care. So if they do have a complication of treatment, an infection, for example, it can be challenging to get them the care they need in a quick amount of time. So when I have patients who I know live way out in the country, far away from our center, I just, we always give them a card, it’s got our phone number and I’m like, you feel like something’s going wrong, call us. I don’t care if it’s 2 in the morning, you call us.

It’s not your job to figure out what’s going wrong. That’s our job. It’s just your job to describe to us what you’re experiencing and then we’ll figure out over the phone whether we want you to drive the three hours to come see us or whether we think you just need to go to the closest place, which might be 30 minutes away.  So at least you’re in the hands of some medical professionals. And then they can call us with an update on what they’re noticing, what the tests are saying. So taking care of patients who live far away from the medical center poses some additional challenges.

Lisa Hatfield:

And that’s a great takeaway for patients. If you have a question, call your provider. They can help take the stress away from making that decision yourself. So thank you. 


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START HERE: Bridging the Follicular Lymphoma Expert and Patient Voice

Follicular lymphoma can sometimes feel overwhelming and complicated, but what can patients and care partners do to help improve their care? With this question in mind, the Patient Empowerment Network initiated the START HERE Follicular Lymphoma program, which aims to close the gap in the expert and patient voice to build empowerment.

START HERE Follicular Lymphoma Program Resources

The program series includes the following resources:

  •   START HERE Patient-Expert Q&A Webinar with expert Dr. Sameh Gaballa moderated by a cancer patient
  •   START HERE Library of resources has kicked off with a resource guide filled with a newly  diagnosed checklist, diagnostic tests, glossary of terms, follicular lymphoma educational and support resources, along with expert tips
  •   Your START HERE 90-Day Plan personalized 90-day patient plan with resources from trusted advocacy partners
  •   START HERE Activity Guide a downloadable, printable support resource packed with information and activities to educate, empower, and support follicular lymphoma patients and care partners in their journeys through care
  •   START HERE Resources of PEN text alerts to receive personalized support from PEN Empowerment Leads, blogs, and downloadable guides

Patient-Expert Q&A Webinar Topics and Key Takeaways

In the Patient-Expert Q&A webinars, follicular lymphoma experts Dr. Sameh Gaballa from Moffitt Cancer Institute and Dr. Kami Maddocks from Ohio State University Wexner Medical Center shared their expert knowledge to help patients and care partners fortify their knowledge and confidence. Cancer patients and Empowerment Lead Lisa Hatfield moderated the discussions and shared some of her perspectives as a patient. The follicular lymphoma experts and cancer patient provided some in-depth discussion along with key takeaways. Some of the discussion covered:

Dr. Maddocks advice

The concept of watch and wait is a key point that was covered in the webinar. Dr. Gaballa shared how he explains watch and wait to patients. “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.””

The main predictor of follicular lymphoma prognosis is called POD24. Dr. Gaballa explained the significance of this. “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 immunotherapy, 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.”

Dr. Gaballa advice

Follicular lymphoma patients should try to remain aware of symptoms of disease progression or transformation. Dr. Gaballa discussed some symptoms to be on the lookout for. “…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.

Lymph node involvement should be monitored as well. Dr. Gaballa explained, “…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.

Follicular lymphoma clinical trials continue to bring exciting opportunities with potential improved treatments with a future that looks hopeful. Dr. Maddocks shared an update about a possible trial for bispecific antibodies. “…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.

It’s important for patients to share about their symptoms during watch and wait. Dr. Maddocks explained her perspective about patient communication. “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…I think people should always call with any signs, symptoms, concerns, and then it can be addressed.

Some blood cancer patients may be surprised to learn about the potential for skin vulnerability with some cancer treatments. Dr. Maddocks discussed guarding against secondary cancers and increased vulnerabilities. “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.

Some program participants provided valuable testimonials about the START HERE Follicular Lymphoma Patient-Expert Q&A webinars.

  • “I fully understand the potential for transformation and early recurrence, but it was wonderful to hear the hopeful and positive tone of this webinar. Thank you!
  • “I appreciated that he mentioned that the science behind FL treatment is continuing to evolve at a rapid place.”
  • “Much better comprehensive understanding of my disease, hopefulness for the future, and a better knowledge base to ask questions and advocate for myself.
  • “Things were explained simply and thoroughly. And I like the 30-minute format. Great presentation. I look forward to more.
  • “This was a great program, I learned so much. The fact that FL has many treatments in the pipeline. The doctor is an excellent communicator.”

Many other questions were raised during the Follicular Lymphoma Patient-Expert Q&A webinars. We hope you can use these valuable follicular lymphoma resources to build your knowledge and confidence toward becoming a more empowered patient or care partner.