NHL Treatments and Clinical Trials Archive

When it comes to treatment, NHL patients and their care partners have much to consider. There are often many options available, each with advantages and disadvantages. Some people may seek clinical trials, others may have few feasible options. Understanding treatment options, goals, and what to expect are vital to achieving the best possible outcome for you.

More resources for Non-Hodgkin’s Lymphoma (NHL) Treatments and Clinical Trials from Patient Empowerment Network.

PODCAST: HCP Roundtable: Critical Clinical Trial Conversations in the Expanding Myeloma Landscape



 

Treatment options for multiple myeloma have increased substantially, mainly attributed to advancements in clinical trials. More than ever, HCPs having conversations about trials is critical. Given that underrepresented communities bear a disproportionate burden of multiple myeloma, it becomes imperative to shift this paradigm.

What are the optimal approaches to initiate these conversations early in the patient journey? How should HCPs effectively communicate information about clinical trials to patients and their families, including care partners? Myeloma experts Dr. Craig Cole and Charise Gleason lend their expertise, offering insights into best practices and guidance on the next steps to be taken.

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Transcript:

Dr. Nicole Rochester:

Welcome to this Empowering Providers to Empower Patients Program. I’m Dr. Nicole Rochester, founder and CEO of Your GPS Doc. EPEP is a patient empowerment network program that serves as a secure space for healthcare providers to learn techniques for improving patient-physician communication and overcome practice barriers. In this

Myeloma roundtable, we are tackling critical clinical trial conversations in the expanding myeloma landscape. Some of the things we’ll discuss during this program include, how to explain the sequence of myeloma treatment and how clinical trials fit in. Healthcare provider to healthcare provider, recommended strategies for initiating clinical trial conversations early in the myeloma patient journey, and how to effectively mitigate and manage concerns regarding clinical trials through education, and continuously encourage patients and their care partners to ask questions.

It is my honor and privilege to be joined by Charise Gleason, vice President and Chief Advanced Practice Officer for Emory Healthcare, and adjunct faculty at the Nell Hodgson Woodruff School of Nursing at Emory University. Ms. Gleason leads the physician assistants and nurse practitioners across Emory Healthcare, overseeing clinical practice, quality, safety, and education. Thank you so much for joining us today, Ms. Gleason.

Charise Gleason:

Thank you so much for having me.

Dr. Nicole Rochester:

We’re also joined by Dr. Craig Cole, a board certified hematologist. Dr. Cole leads multiple clinical trials in multiple myeloma, and has worked extensively with patient advocacy groups to empower, educate, and bring equitable care to everyone. Thank you so much for joining us today, Dr. Cole.

Dr. Craig Cole:

Yeah, and thank you for the invitation.

Dr. Nicole Rochester:

While this conversation can be broadly beneficial, in this program, we are speaking to the unique needs of myeloma patients and families. So let’s get started with how to explain the sequence of myeloma treatment, and how available clinical trials fit in. So I’m going to start with you, Dr. Cole. We know that there has been rapid advancement in the myeloma sphere. Can you speak to how the introduction of novel drugs, treatment combinations and therapeutic modalities may pose some challenges for healthcare providers as they attempt to explain the sequence of treatment in relation to available clinical trials?

Dr. Craig Cole:

Yeah, that’s a really good question, especially because so many things have been changing in myeloma, and such a rapid secession. It really, it’s been kind of not only an incredible transformative past 20 years in myeloma as we’ve moved away from using chemotherapy to using really targeted therapy, but really in the past five to 10 years, and us using immunotherapy and now T-cell directed therapy, it’s been transformative.

And it’s been very, very difficult for myeloma experts to kind of configure how these treatments are sequenced, and how the clinical trials are conducted. But basically, we have gone from using single drug therapies to using combination therapies for refractory patients to using multiple modalities and as upfront therapy for myeloma. Up until today, us using four-drug induction therapies with IMiDs proteasome inhibitors and now immunotherapy with anti-CD38 therapy being used upfront.

Now, we have…we’re on the fact we are past the horizon of using T-cell directed therapy for relapsed/refractory myeloma. Those are now being put in combinations. And at the last meetings, we saw data in combining talquetamab with the bispecific antibody with pomalidomide (Pomalyst) having incredible response rates to 99 percent to a 100 percent. The combination of using daratumumab (Darzalex)with teclistamab (Tecvidli) at ASCO a couple of years ago having very, very, very high response rates for relapsed/refractory patients.

And, of course, the combination of using two bispecific antibodies talquetamab (Talvey) and teclistamab together having, again, in these incredible response rates and for relapse refractory myeloma. So in very quick orders, we’re going to see those therapies moving further and further upfront, which is a huge benefit to patients.

But it can be kind of difficult to keep up with all the changes in myeloma, especially as we move from using these drugs as single agents, to using them in combination. And not only to speak to using some of the newer drugs like Mezigdomide in combination with daratumumab, having one of the CELMoDs having very, very high response rates.

And so it’s exciting, but it does, it’s a challenge to discuss clinical trials with patients, because so many things have changed. We now have clinical trials across the spectrum of myeloma, using bispecifics as upfront and smoldering myeloma, which was at the last ASH meeting to using again, more novel therapies upfront and relapsed/refractory space and in the maintenance therapy space.

Dr. Nicole Rochester:

Well, that’s all very exciting, and I appreciate you sharing that because as you’ve said, there’s been a really kind of an explosion for lack of a better word, in the numbers of treatments that are available as well as increasing improvements and results. But as you shared, having all of these different modalities available can definitely cause some confusion even among those who do this every day. Do you have anything to add to that, Ms. Gleason?

Charise Gleason:

No, I think, well, I think Dr. Cole described that perfectly. It’s an exciting time, and also a challenging time, which just really brings you back to that team care approach to your patient, and how all of us need to work hard to keep up to date on the latest information. Dr. Cole mentioned quadruplet therapy, and we’ve got two clinical trials that have essentially told us. if you add that quadruple therapy and add that antibody upfront, you drive that deeper response.

So we change our practice probably sooner in the academic settings. And it’s really how do we get this out to other healthcare providers in our referral basis that send patients to us? And then also, how do we do maintenance? And I think Dr. Cole would agree most of us risk-stratify for that maintenance setting too, whether it’s one drug or multi-drug, depending on our patient’s disease.

Dr. Nicole Rochester:  

Wonderful. So certainly, this conversation alludes to the fact that the clinical trials regarding these medications are also increasingly complex. And so I’m going to go to you, Ms. Gleason, because we know that nurses and advanced practice providers provide understanding of these trials, including potential benefits and risks, and all of the things that are required as they consider participating in a trial. And then, as you all have both shared, there is some tailoring around the treatment with regard to the disease state, whether it’s relapsing, whether it’s refractory. So with that in mind, do you have any best practices around tailoring the trial conversation with regard to specific patient needs and situations?

Charise Gleason:

Well, I’ll start with, we bring that discussion with all of our patients about the potential of a clinical trial from the start. And so we’re all versed on that, we all look to what clinical trial could be available for this patient. So we’re used to having that conversation. So our teams all need to be educated, participate in our research meetings, so we are ready to discuss a trial on that. We sometimes get to spend more time with patients, and we get to know our patients. These are patients we see frequently, and so we can have those conversations.

You might have somebody who’s starting to have a biochemical progression. It’s not time to change their therapy yet, but we’re already thinking about what’s that next line of therapy. And so as we start to approach that with clinical trials and standard of care, and opening that dialogue, so it’s really that communication and that rapport and relationship you have with your patient, and that care partner. So an ongoing conversation about the different treatments that are available to them.

Dr. Nicole Rochester:

So we know that patients with myeloma are living longer lives based on everything that you all have shared, and with that comes a different set of options and challenges.  And you also have alluded to this team-based approach, Ms. Gleason, and we know that there’s a critical role that advanced practice providers play in the myeloma clinical trial setting. So I’d love for you to speak to that..the role that advanced practice providers play in myeloma clinical trials.

Charise Gleason:

Yeah, the advanced practice providers have started specializing like our physicians do, and we have that collaborative relationship, and we are part of that team approach to take care of our patients. So we’re identifying patients for potential clinical trials. Our scope of practice does vary a little bit from state to state. So in some cases, we can also enroll patients. If we’re not able to do that, though, we can already have discussed the trial, discussed side effects, presented them with the consent. So when they do meet with the physician, they’ve already seen a lot of that information, and then they can ask further questions with the physician.

I think the other big role that we play in the clinic setting is we see these patients, we see these patients for follow-up. So we’re doing a lot of management of the side effects, supportive care through the trials. We might be a little more available during the week, so if a patient’s here on another day, and they’ve got something going on, we’re answering those portal questions, and calling patients back and just really collaborating with our physicians and also the research team.

Dr. Nicole Rochester:

Dr. Cole, I’m going to turn the conversation back to you. As a physician, I know that often, there are some barriers just as part of our everyday practice that can hinder our work. And so I’d love for you to speak to any unforeseen or outdated practice related barriers that you feel may hinder your work, and the work of your colleagues specifically as it relates to myeloma trials. And then if you could also share some potential solutions to those barriers.

Dr. Craig Cole: 

Yes, super good question. I love this question. There are a lot that are out there that I…barriers that I hear providers talk about at other academic centers and in the community. One is that patients don’t want to go on clinical trials that they…and some of that is subconscious bias. Sometimes those are true, true bias. We know the FDA knows all the drug companies all, and I think every myeloma provider knows that there have been horrific disparities in the enrollment of patients in clinical trials based on race and age and ethnicity that the FDA looked at some of the data of trials that were going for FDA approval, and found that over the past 10 years, and that in those trials, that only 4 percent of the population of the trials were Black.

While in the United States, the number of Black myeloma patients is about 20 percent, over 20 percent of the myeloma population. So that’s a huge disparity. And what I hear is that while older patients and Black and Hispanic and Asian patients don’t want to go on clinical trials, and that’s not true. That’s been shown in multiple clinical trials that actually, the patients of different ethnicities and races actually are more likely to go on clinical trials than other racial groups. And so I think that it’s really important to keep that in mind that patients really…that really the ownership of getting a patient on a clinical trial is really on us to present the clinical trial option to them with every single conversation that we have.

 Some of the other barriers to clinical trials is, and Ms. Gleason had mentioned this, what they do at through the Emory system is that, well, the nurses and the other staff in the cancer center aren’t aware of the clinical trials, that when a patient goes through the clinic, they talk to more than just the provider. They talk to the treatment nurses, they talk to the intake people, they talked to the MAs, they talked to the scheduling people.

And there was a study that was done a few years ago in looking at patients who were given consent forms and declined clinical trials. And they found that a lot of patients declined clinical trials, well, because they said that, well, their doctor didn’t want them on the trial. And when they looked further into that, they saw that, well, the doctor offered them a clinical trial, but when they discussed the clinical trial with a nurse practitioner, when they discussed that trial with a treatment nurse or the MA or any of the other staff, when they didn’t know about the clinical trial, that was considered well, if you don’t know about the clinical trial, it must not be good for me. And then they withdrew from the trial.

So just like what they do, what Ms. Gleason had said, we have an all-in approach. We make sure that the treatment nurses, the MAs, the intake people know what we’re doing, know about our clinical trials, because that’s the fun part about what we do. The fun part is when we say, look, my goodness, this four-drug therapy had a 100 percent response rate. That shouldn’t be left in the physician compartment. It really shouldn’t be left in the provider compartment. That excitement should be clinic-wide. And when you have that all-in approach where everybody’s involved, everyone’s excited about clinical trials, it produces a culture of clinical trials that everybody wants to be part of, and the patients then can jump on that bus and feel comfortable participating in the trial.

Dr. Nicole Rochester:

Wow. Thank you for elucidating that. Both the issue of the health disparities that we see in clinical trials and the need to diversify that clinical trial patient population, some of those biases that exist, as well as really lifting up this idea of creating a culture of clinical trials. I love the language that you use for that and the idea that everyone throughout the entire clinical encounter needs to be both aware of, and excited about the clinical trials that are underway. So I appreciate that.

That leads us nicely into our next segment, which is really focusing on strategies for fellow healthcare providers for initiating clinical trial conversations early in the myeloma patient journey. So I’m going to go back to you, Ms. Gleason. We’ve been talking about this team-based approach. We know that nurses serve as key coordinators of care in the myeloma trial setting, as well as other members of the healthcare team. So from your perspective, what are some recommended strategies that you can share to encourage advanced practice providers, specifically how to initiate the clinical trial conversation at the outset of care?

Charise Gleason:  

First, we need to educate our advanced practice providers. So for new APPs coming into our system, part of their onboarding is the research mission, exposing them to the clinical trials, exposing them to what we have available. We have a weekly research meeting, I’m sure Dr. Cole has similar practices. And then our group has a separate meeting once a week, where we meet for two hours. The myeloma team, we have APPs who are off that day who call in for this meeting, because we go over our patients, we talk about what’s, clinical trials are available, that’s just how we practice and we think about that.

I would like to add to that, referring to a center early is so essential as well, and for us to start having that conversation. And I’ll talk a little bit to build on something Dr. Cole said with our patient population.  In Atlanta, in our database, 40 percent of our data is based on Black patients. And we enroll about 32% to 33% of Black patients on clinical trials. And what our work on trials has showed us too, if you give the same access to every patient, you have good outcomes and good outcomes for Black patients, if not better, than white patients. So we all need to be versed on that, whether you’re the research nurse, the clinic nurse, the physician, the advanced practice. And so we really do bring that approach to taking care of our patients.

And then, managing those side effects and having that open dialogue. So patients aren’t surprised by things. And I’ll use talquetamab for instance. We have a patient who is still on the original trial, who relapsed on a BCMA targeted therapy. Early on, these side effects were new to everybody. And she wanted to come off the trial month end. And it was that education piece and working with her, holding the drug, that now almost two years later, she’s still in remission, tolerating the drug. And so those are the stories and these are the experiences we have. We’re giving really good drugs on clinical trials and patients are responding well.

Dr. Nicole Rochester:

That’s an amazing success story. Thank you for sharing that. What about you, Dr. Cole, with regard to potential strategies for healthcare providers, what are some things that they can implement for initiating these clinical trial conversations early in the journey, particularly in the current environment?

Dr. Craig Cole: 

Yeah. And Ms. Gleason had mentioned this at kind of the top of our talk about having those conversations on day one. On day one of our patients coming in either as a second opinion, as a new diagnosis, as in whatever setting, we talk about…we have a list that we go through with the patient that talks about their stage or the disease, how we’re going to follow up. And there’s a line that I have to address, which is, clinical trials. So I mentioned our clinical trials, I mentioned on day one. And I think one strategy that other healthcare providers can take is that, even if you don’t have a clinical trial at that time, so right at this moment, we don’t have an upfront clinical trial.

We have one for maintenance therapy, post-transplant, but we don’t have an upfront trial. I mention that. I say that there are clinical trials that are available for your myeloma. Right now we don’t have a clinical trial for upfront myeloma, but we can refer you for a second opinion for an upfront trial if you’re interested or…and we have a clinical trial in maintenance. So that sets the groundwork that we’re going to talk about clinical trials on every visit. And that it doesn’t come as a surprise. Because the last thing you want to do is that someone is having a relapse and you say, “Oh, we’re going to talk about clinical trials today.”  Because then it’s like, “Oh my goodness, this is a desperation.” This is a desperation move, and it puts a lot of anxiety when you frame it, and we need to do this now as opposed to having on day one.

The second thing that I think really helps is getting patients involved in the myeloma community, especially with the support groups having not only the patients, but their care providers and families involved in the myeloma community. Because the myeloma communities through a lot of the support agencies like the IMF, the MMRF, the HealthTree, they have a very strong clinical trial culture. And when patients get involved, not only is that empowering to see other myeloma patients doing well, but to hear other myeloma patients talk about their experiences in clinical trials really, really helps. And I think the last thing that we use to help patients, go through clinical trials, is a couple of other things, is one, every time we talk about treatment options, if that is maintenance, if that is smoldering, if that is a relapsed/refractory therapy, we always put clinical trials in that conversation.

 Again, even if we don’t have that clinical trial at our institution, we talk about this as an option that we could refer you out to. And, and then we always talk about…I think one other little thing is that every visit that patients have, I somehow include some of the new things that are happening in myeloma. Now, my patients kind of expect it. They expect. They know when December and June is because when I see them after ASH and ASCO and sometimes they’re like asking, “So what’s new?” And once we get into that groove, they see, gosh. There are response rates that are off the charts with some of these new things. These patients are involved in clinical trials and the myeloma and multiple myeloma research is progressing at such a rate and things are getting better that patients want to be involved in it.

So we’re always talking about new things. Do I go into depth of detail with talquetamab and pomalidomide. I don’t go into depth of detail. And I say, where I was this clinical trials at our last ASH meeting that combined these two drugs for a relapsed/refractory myeloma, even patients who were refractory to some of the drugs you’re on now. And response rate was like 100 percent. And then when I talk about those clinical trials in the future, they’ll remember, man, that guy was talking, he’s all upset about these clinical trials. Maybe I want to be involved in them. So that’s kind of my few strategies that I use. 

Dr. Nicole Rochester:  

I love that. And what I really hear both of you saying is this idea of normalizing conversations about clinical trials and not introducing them as like a Hail Mary, so to speak, but really from the very beginning, letting patients and care partners know that this is a viable treatment option. So I think that is wonderful. And I can say like, your excitement is contagious for me, so I can only imagine how excited the patients that you work with feel.

So let’s move on to our final topic. How do we mitigate and manage concerns despite all these wonderful things that both of you have shared? I’m sure that patients and family members have concerns about myeloma clinical trials. And so I’ll start with you, Ms. Gleason. And as you hear concerns from patients and families over the years possibly related to fear of randomization, fear of getting the placebo, you all have mentioned some uneasiness about adverse effects. How do you effectively mitigate and manage these concerns with patients and their family members and care partners?

Charise Gleason:

Yeah, you just have to continue to have open communication. And if you’re, if a patient is accustomed to you mentioning clinical trials, then when you present one to them, right? They’re a little more open to it. But not everybody starts with us. And we get referrals in midway and different parts and different paths along the way. But patients we do hear, “I don’t want to get a placebo.” Or you’ll mention a clinical trial and somebody will say, “Am I ready for hospice?”

And it’s, you have to go back and start that education again that, no, you’re getting good treatment on this, a registry trial, for instance, you’re going to get standard of care treatment plus or minus something else, right? And so we really have to go back and educate that you are getting treatment. You’re going to be watched closer than any of our other patients actually.

You’ve got a whole team around you that’s talking about your trial and our patients every week. And so I think that our excitement and our being positive, we can get those patients to enroll on trials. I think something that makes me really happy is, we keep a list of every treatment line, and when you go through and it’s like standard of care, clinical trial, clinical trial, standard…it’s we’ve done the right thing then, right? Our patient has had full advantage of what’s available to them when we do that. 

Dr. Nicole Rochester:

What about you, Dr. Cole? Do you have anything to add with regard to managing the concerns that come up?

Dr. Craig Cole:

Yeah. The one thing that I tell patients, and I tell patients one-to-one, and when I do talks for some of the efficacy groups that I tell lots of patients that. That in 2024, myeloma trials are incredibly competitive. And the only, the best, best drugs, now float to the top as part of our clinical trial portfolio. There were days I remember begging companies for clinical trials saying, “Please, please think about myeloma.” And we were struggling.

Now, it is incredibly competitive, and that competition does a fantastic thing for patients because what we see in the clinical trial portfolio are drugs that are safer and safer and safer, and drugs that are more effective and more effective. When you go to these meetings and the expectation is that our response rate needs to be over 60%, then you know that the clinical trial mail you, that we work with them, is of a super high quality, which you really can’t say for a lot of other types of cancer.

So I tell patients that their fears that they have are absolutely justified. And one thing we teach the fellows, the residents and the medical students, is that you validate those concerns and you listen to those concerns and you don’t ignore it or blow through it. That you absolutely…those are the most important parts of that conversation. And if you don’t validate it, the patient says, “Well, I have a fear of randomization.” And you go, “Hmm, there’s no such thing.” Then that’s not validating. And that’s not even listening. That’s just moving on because you don’t have that concern, but you’re not bringing that, you’re not validating the patient’s concern. And so you have to be very, very careful in doing that because there are multiple studies that have shown those are the big concerns.

Also, bringing up the things that are facilitators for clinical trials, that if there is an opportunity for reimbursement for travel or reimbursement for hotel stays or reimbursement that we say that this trial has a reimbursement program, or if we say that use other things that help facilitate clinical trials like speaking to the family, not just speaking to a patient, but speaking to the caregiver and speaking to the extended family that that patient will have a conversation with are really important conversation because the more people that you can talk to, that’s part of that patient’s decision-making group, which can be very different from patient to patient based on their culture, the more likely you are to get a consensus among that decision-making group for the patient to go on a clinical trial.

Dr. Nicole Rochester:

Those are great tips. Thank you both so much. It’s time to wrap up our roundtable. I must say I have truly enjoyed this conversation as always. I have learned a lot. I’m sure that our audience has learned a lot. In closing, I’m going to go to each of you just to share maybe one takeaway that you’d like to leave with the audience. So I’ll start with you Dr. Cole, one takeaway.

Dr. Craig Cole: 

One takeaway. I actually thought about this, but I think that the biggest takeaway is, if I can squeeze two in.

Is that, is to remember that basically they’re all patients want to be involved in clinical trials and the ownership of having patients on clinical trials is really on us to really talk to them over a longitudinal period, to talk about clinical trials, to have them involved. To not look at a patient saying, “No, they don’t want to be on clinical trial.” That you really engage that patient to tell them about really the incredible progress that we’ve made, how competitive clinical trials are and how exciting it is to be part of that research environment. And that would be my one, my two sort of closing thoughts.

Dr. Nicole Rochester:

Thank you. And what about you, Ms. Gleason?

Charise Gleason:

Dr. Cole said it well. Please discuss this with your patient. Listen to them. Listen to their concerns. Don’t make decisions for them based on bias that maybe you’re bringing in. Don’t make decisions based on maybe it’s too far. Patients drive hours to go on clinical trials, and let’s give them the information and have that conversation.

Dr. Nicole Rochester:

Wonderful. Well, thanks again to both of you, and thank you all for tuning in to this Empowering Providers to Empower Patients program. I’m Dr. Nicole Rochester. Have an amazing day.

PODCAST | HCP Roundtable: Best Practices for Talking About Clinical Trials With Myeloma Patients

 

Clinical trials represent tomorrow’s medicine today, yet not every patient confronting a myeloma diagnosis is informed about all available care options. Surprisingly, some patients and their care partners are never introduced to the possibility of participating in clinical trials. How can we alter the course? What strategies can healthcare professionals (HCPs) employ to effectively communicate information about clinical trials and guide patients through next steps?

Experts Dr. Beth Faiman and RuthAnn Gordon share important insights into understanding the critical role of clinical trial nurses and how they educate and mentor nursing professionals around best practices for broaching clinical trial conversations.

Download Resource Guide|Descargar guía de recursos

Transcript:

Dr. Nicole Rochester:

Welcome to this Empowering Providers to Empower Patients program. I’m Dr. Nicole Rochester, pediatrician and CEO of Your GPS Doc. EPEP is a Patient Empowerment Network program that serves as a secure space for healthcare providers to learn techniques for improving physician-patient communication and overcoming practice barriers. Today we are tackling best practices for talking about clinical trials with myeloma patients. One significant challenge for some providers is initiating conversations about clinical trials and determining the appropriate timing of those conversations.

While clinical trials are often described as embodying tomorrow’s medicine today, not every patient facing a myeloma diagnosis is well-informed about all available care options. Astonishingly, some patients and their care partners are never even introduced to the possibility of participating in clinical trials. How can we shift this trend? How do we make these conversations a standard part of healthcare discussions at the outset of care?

What strategies can we as healthcare professionals employ to effectively convey information about clinical trials and guide patients and families through the next steps? We are joined today by RuthAnn Gordon, Director of Clinical Trial Nursing at Memorial Sloan Kettering. Ms. Gordon oversees clinical trial nurses, and develops and implements policies, procedures, standards, and systems to improve quality and compliance in the conduct of clinical research. We are also joined by Dr. Beth Faiman, a nurse practitioner and research oncology professional at the Cleveland Clinic. Dr. Faiman is an active author, presenter, and educator on the topic of multiple myeloma. Thank you both for joining me for this very important conversation.

Dr. Beth Faiman:

Thank you for having us.

Dr. Nicole Rochester: So we have a lot to discuss as it relates to best practices for talking about clinical trials with myeloma patients and their families. And I think this is always a topic that deserves so much conversation, likely more than we will be able to dedicate today. And while it can be a broadly beneficial conversation to have, in the program today we are speaking to the unique needs of myeloma patients and their families.

Some of the topics we’ll tackle today are understanding the critical role of clinical trial nurses, healthcare provider to healthcare provider recommended strategies to effectively communicate about pretrial eligibility determination and the consenting process, and how to educate and mentor nursing professionals in community hospital settings and beyond, guiding them to assist patients and families through the subsequent steps of participating in a clinical trial.

So let’s get started by talking about the role of clinical trial nurses. And, Ms. Gordon, I’m going to start with you. We know that research nurses are at the front line of treating patients. Can you speak to your role, and how you believe it has changed over time?

RuthAnn Gordon:

Absolutely. First, I can tell you that I’ve been doing research nursing for over 20 years and really love the work. I think it’s important for patients to have that support when they’re going through a clinical trial. And so we’ve done a lot of work to make sure that they have that support. So our role is to really be able to guide the patient through the journey, making sure that they’re educated on what they can expect on the clinical trial, and not only in terms of what maybe the drug might be doing them in terms of side effects, but what is their schedule going to look like? When are they going to have to come in? How long are they going to be here? What does that mean? And how do we support them with their quality of life while they go through all the responsibilities that they as patients have on a clinical trial, and what do they need to do to get ready for that experience?

And so we’re guiding them, we’re educating them, we’re ensuring that they do understand the potential side effects, but do understand also what their role is in the clinical trial and what they can expect. And I think that in terms of what has changed is that we have really put more value on the fact that having that nurse that has the expertise in the clinical trial and really can gate keep all of the patient care coordination that that involves from a clinician experience and from a clinician perspective, has really helped to ensure that our patients are ready, that we can do our very complex trials. Because trials have changed so much in the last decade.

There’s so many more expectations. There’s so many more things that need to happen while they’re on the trial that really having that clinician doing that with the patient has improved our ability to do those kinds of complex trials. And so I think that really recognizing that having that clinician perspective at the partner, at the bedside with the patient has really helped us to expand the kind of trials that we can do.  

Dr. Nicole Rochester:

Thank you. And as a physician who acknowledges that the time that we are allotted with our patients is often very little, it really makes a lot of sense that you all are able to bridge those gaps in the patient education, and are critically important to this work. So thank you for the work that you do. Dr. Faiman, we know that patients with myeloma are living longer, and they’re dealing with a different set of challenges than perhaps they previously encountered. So can you speak to the critical role of nurses specifically in the myeloma trial setting today?

Dr. Beth Faiman:

Yeah, absolutely. You know, I must first start by saying that the successes in the treatment of multiple myeloma can be owed to the brave participation of the patients and the caregivers. So let’s not forget about the caregivers to support the patients with clinical trials. And I started as a clinical trials nurse in the 1990s managing these patients, and a nurse practitioner in 2002. And now my role is different also as a researcher. And so I have seen firsthand all these drug developments. And so the difference from before when we had very few available therapies to now we have an armamentarium of drugs, and so deciding whether or not to participate in a clinical trial is super important. And how can we support our patients who are now living a longer lifespan with all these cumulative physical and financial issues? How can the nurses support the patients to get the access to the drugs and access to the financial resources they need so that they continue living a good quality of life? I know we have a very robust program to talk about later on, but I think nurses can fill that critical gap of finding resources for patients to allow them to participate in clinical trials to live a better life.

Dr. Nicole Rochester:

Thank you. And thank you for acknowledging the role of the patients and their caregivers in all of the growth that we’ve seen in this field, in the research. Ms. Gordon, we know that diversity in clinical trials is lacking. Certainly there have been lots of reports about that. It’s gotten increasing attention over the last few years. There’s now regulations related to that. And while things are changing, we have a long way to go. And it’s also important that we celebrate the wins that we’ve achieved along the way. So my question for you is, do research nurses play a role in increasing diversity in clinical trials and also in trial innovation?

RuthAnn Gordon:  

Absolutely. Absolutely. I think that one of the things that is important is community outreach, right? And so we have a lot of opportunities for research nurses. Well, as in large academic settings, a focus needs to be on exploring ways to have partnerships with our community organizations. And once those connections are established, the research nurses can play an extremely pivotal role in ensuring that we’re not only at point-of-consent educating, but way before that, getting involved in pre-screening activities in order to ensure that we’re looking at a diverse population.

And also to help with providers that are in the community that may have more advanced questions, and having the nurse being partners with those clinicians in order to help them get through the questions that they might have in a more timely manner. And so the research nurses that are attached to those academic centers have a pivotal role in ensuring that the community centers have support.

And in doing the pre-screening, I think is an important feature of having the research nurse also be involved in that process. And so I think that…we know that the community has needs, and we know that we need to increase that access. So looking at opportunities to partner with those settings, to me, with the research nurse, is really critical, and I think is an important way that we can do that.

Educating is, I’ll keep going back to that, when you get hands on that patient, making sure that they understand what they can expect. And any misconceptions. Clearing up misconceptions about being on clinical trials is really important so that when you have a patient that is eligible, that they feel comfortable and confident in joining that study.

Dr. Nicole Rochester:

Wonderful. Thank you so much. Dr. Faiman, I’m going to come back to you. And my question for you is, can you speak to unforeseen or outdated practice-related barriers that may actually hinder the work of research nurses?

Dr. Beth Faiman:

Absolutely. So I wanna preface this by saying in my mind. I think that both oncology nurses and advanced practice providers are highly trained professionals that should function within a multidisciplinary team. So that team, just as you mentioned before, Dr. Rochester, was the physician has limited time, maybe even the advanced practice provider has limited time. How can we harness all of our resources to provide the best care to that patient? And clinical trials are one of them. Clinical trials will offer support so that the patient can have access to a pharmacist, a social worker, a dedicated nurse, a dedicated line to call if they’re having a symptom. But to speak to some of the outdated procedures, again, it goes to scope of the practice. No matter how highly trained they are experientially or with credentialing, there are practice barriers within the hospital organization within state laws.

The nice thing about clinical trials though, is that nurses in most institutions are very able to watch that clinical protocol. They’ll look for who needs to hold a medication because of toxicity, consult with the provider, and then they’ll say, “Okay, hold your dose. And when your toxicity resolves, reduce it one dose level, and come back for labs,” or whatever that would entail. So while there are outdated practices historically, I think that within clinical trials nursing it provides some more autonomy for oncology nurses, again, as a part of that multidisciplinary team to enhance patient care.

Dr. Nicole Rochester:

That’s wonderful. Are there any additional solutions that you think are necessary as we continue to see advancements in myeloma?

Dr. Beth Faiman:

Continuing education for these highly trained providers. And so those kind of…the education though, I’ll tell you, I think should focus a lot on the disparities in clinical research. One of the things I’m passionate about is highlighting the implicit and explicit biases that are in clinical research. Many of us will say, “Oh, that person won’t be a good clinical trial candidate because they live too far away or they don’t have a caregiver.” And so I’m really…I tell all of my nurses, nurse practitioners, even physicians, just ask a patient. Don’t think that because they live an hour away, they’re not going to want to participate in a well-designed clinical trial without even asking them. That doesn’t even allow them the opportunity to provide feedback.

And then not to mention all of the resources that are available to patients that provide, that participate in clinical trials. Many of the research studies will provide transportation or an overnight stay or some nominal, again, not trying to coerce the patients, but some nominal reimbursement for expenses to allow them to have access to that drug. So I can talk on and on, because I’m so passionate about this topic. But being aware that biases exist, through continuing education will hopefully enhance the diversity of clinical trials so that patients will be able to have access to care, and then that the clinical trial results are representative of the actual population of who we’re treating.

Dr. Nicole Rochester:

Thank you. I can definitely feel they’re both of your passion, and that’s why it’s so important that we have you here with us today for this conversation. So let’s shift focus a little bit and begin to talk about communication between healthcare providers to effectively communicate about pretrial eligibility determination and the consent process. So I’m going to go right back to you, Dr. Faiman. What do you think are the unique barriers that providers face when they’re speaking about myeloma trials to patients and their families?

Dr. Beth Faiman:

Right. So I think multiple myeloma is unique in that there are such an explosion of new therapies within the last decade. There hasn’t been such momentum in any other cancer such as multiple myeloma. But, unfortunately, there are challenges such as language barriers and communication problems that overarching with all the different specialties. The geographic I had already mentioned in a previous discussion about the geographic barriers to participate in clinical trials, not meeting inclusion criteria, I think it takes an astute nurse or advanced practice provider or physician to now sequence the therapy.

So for example, they have new therapies such as BCMA-targeted drugs that are available through cellular therapy trials or bispecific antibody trials. And without getting too specific into the drugs, you need a specialist to be able to say, “Okay, if I give you this drug today, that will exclude you from a clinical trial that might be very innovative and promising in the future.”

So those are unique barriers to accessing clinical trials or standard therapies for that matter because of the plethora of therapies that are available. So getting in, having patients get in with a myeloma specialist, they might not see them on a regular basis, maybe employ telehealth techniques, see them once and then virtually connect, share information about what might be available. Those are ways that you can provide access to patients, caregivers, and others throughout their disease trajectory because they’re living longer than ever.

Dr. Nicole Rochester:

Which is a wonderful thing.

Dr. Beth Faiman:

Yes. 

Dr. Nicole Rochester:

Ms. Gordon, you’ve been doing this for a long time. In your experience, what are tried and true strategies that healthcare providers can implement to effectively communicate with their patients about clinical trials when speaking to pretrial eligibility determination and the consent process specifically?

RuthAnn Gordon:

Yeah. Thanks for the question. I think that an important thing whenever we’re talking to our patients is to really understand where they are with understanding and how they learn. So it’s important for us to know what their health literacy is so that we’re making sure that we’re talking in a language that they can understand and using words that are appropriate. And so that’s key. Clinical trials have a lot of comprehensive and complex assessments that are needed for pretrial eligibility, right?

So I think it’s really important to make sure that we are being transparent as to what they can expect. We don’t want them to have surprises later on and then not feel like they want to continue with that process. So I do recommend to my providers and my research nurses, sometimes get out the hard stuff up front. Know if they’re going to be there for 12-hour PKs. Let them know. It shouldn’t be a surprise. And I think that that really helps patients. First, they get involved in the process, they know what to expect, and you can really have more confidence in their adherence.

The other thing is to allow time for the conversations, right? We need to allow time for our patients to ask questions. And the consent process can be lengthy. There’s a lot on the document. Sometimes it’s quite long. So you wanna make sure that they’re in a state of mind to have the conversation, that you allow time for questions, and that you make it an exchange between the two of you. It’s a dialogue. It should be. And you should come with understanding where they’re at; understanding a little bit about what’s going on behind the scenes, right? What’s happening at home is important as you’re talking about pretrial eligibility, as you’re talking about what they can expect on trial, just to get a full picture of them.

So I think that those to me are very helpful. Providing take-home information to the patient so they have something to reflect on later is also really important, because they’re not going to grasp everything in that one session. And consenting is like an ongoing process, right? You have one conversation, you probably have 10 more.

Dr. Nicole Rochester:

That is wonderful. Thank you so much for sharing that. And I really appreciate that both of you have highlighted the importance of health literacy, and meeting our patients and families where they are and making sure that they understand, and this idea that it’s a continuum: That there may be multiple conversations that will be necessary. Dr. Faiman, as the myeloma treatment landscape continues to expand thanks to clinical trials, how are clinical trial conversations evolving, and what do you feel should be top of mind?

Dr. Beth Faiman:

That’s an excellent question. Over 20 different drugs are available in various combinations. And so we talked about sequencing very briefly about having patients that have access to clinical trials, making sure they’re not exposed to this class, or maybe they needed to be exposed to this class of drug before they can get drug B, for example. And so sharing mutual information through shared decision-making, again, the patients sharing information and goals of care, the provider and healthcare team mutually sharing information, bring in your social worker or pharmacist, etcetera, and then you can mutually agree on a treatment for the patient. And so that is something we did not have 20 years ago. There were very few effective agents.

I like to remind patients when we provide clinical trial consent forms, that the language is written by lawyers, but it’s intended to protect you. I overemphasize that this is voluntary, and you can withdraw your consent at any time. But I try to go back and highlight why there’s stringent, plus or minus one day, maybe you can’t take off three days to go on a holiday weekend, because we really need to dose this drug on that day and obtain this blood information. So again, having the patients understand what’s involved in the clinical trials and then being able to provide information.

I like to also offer handouts. So the International Myeloma Foundation has clinical trials and diversity handouts. And then another one that I really like is by the FDA that describes the importance of clinical trials. I give that to everybody. So at diagnosis, if you’re on a standard care treatment, you’re not receiving a clinical trial. Everybody that comes into my office that I see for myeloma amyloidosis and related disorders, I would say, “You are a candidate for clinical trial now, but if I or somebody else does not involve you or ask you to participate, then ask us. Just ask us about clinical trials.” I even have a pen that says “Ask me about clinical trials” so that everybody can see it.

Dr. Nicole Rochester:

I love the idea of a pen. Wonderful. Well, let’s move on to how to educate and mentor nursing professionals. Both of you are nursing professionals, and you’ve clearly highlighted in this program so far the importance of the role of nurses in this clinical trial process. So, Ms. Gordon, I’m going to go to you. We know that one significant challenge for some providers is actually initiating conversations about clinical trials and also determining the appropriate timing. Can you speak to whether care variation may pose challenges in community hospital settings, perhaps compared to academic hospitals?

RuthAnn Gordon:

Yeah, absolutely. I think one of the most important things about when to talk to the patient is every time, anytime, right? I think that we should be asking them if they’re interested in clinical trials. If they haven’t been engaged in that, we should be talking to them about, “You know, there’s maybe a chance at some time in our partnership together that we will be talking about clinical trials.” And introducing that up front I think is really important so that we don’t leave clinical trials sort of as a last thought and the patient have that feeling.

And I think that for the community setting, that’s one of the things that may be a challenge, is because it is hard to put a patient on a clinical trial and run it from a community setting. So it’s, how do we give them the support and resources so that it’s not so hard and that they do offer it and talk to their patients as much as possible about it? And I feel like that’s what we need to do more with these partnerships with academic settings, is that we have to give them support so that it’s not so hard, and that that clinical trials first of mind to them when they’re planning care for their patients.

Dr. Nicole Rochester:

I see a theme here: Partnership, collaboration. Dr. Faiman, as we continue on this topic, and as someone who has been a consistent figure in the continuum of care, how do you guide other nursing professionals when it comes to clinical trial communication? Do you have specific tips or tricks or things that you can share with the audience?

Dr. Beth Faiman:

Yeah, absolutely. So I think I have a unique perspective having been a clinical trials nurse, nurse practitioner, and now I conduct, independently, clinical trials. And so I, throughout that whole journey, so I share my experiences and some of the key tips that I like to share with other nurses and healthcare providers is just coming to the patient level. And as Ruthie had said a moment ago, at each encounter you have that opportunity to educate that patient about their labs, what’s their remission status, their disease status, what drugs are they on, what worked, what didn’t work? And the ones that are in remission for a while, one, two, three, five years, we have discussions about next therapy. So I say to them, “Okay, now, we have a great clinical trial. I think everything’s going very well with your disease remission status, but let’s make sure that you know what might be the next best thing for you.”

And I start planting that seed, giving them information about next therapy so that it’s not that, “Oh my gosh, I thought I was never going to relapse and now I need another treatment.” It’s okay, we have a game plan, we’re here in this together, let’s get some information. So disseminating this at this critical information to nurses at national conferences about the different drugs that are available, the toxicities, and how to offer them to our patients, I think is really important. But really just cheering in that partnership, as we just talked about, is really key to success, I think.

Dr. Nicole Rochester:

Great. Well, it’s time to wrap up our roundtable. And I have truly enjoyed this conversation. I have personally learned a lot. I’m sure that our audience will learn a lot as well. So I’d like to get closing thoughts from each of you. So I’ll start with you, Ms. Gordon. What is the most important takeaway message that you wanna leave with other healthcare professionals who may be watching?

RuthAnn Gordon:

Thank you. First, thank you for having me at this. This has been an amazing experience, and I want the providers out there to not be afraid of clinical trials, to look at opportunities to work with nurses to help support you in those clinical trials, to have the conversations with your patients early and often, and to work with your community partners.

Dr. Nicole Rochester:

And thank you. Thank you, Ms. Gordon. What about you, Dr. Faiman?

Dr. Beth Faiman:

Well, I guess I would say never underestimate for the nurses, nurse practitioners, physician assistants, social workers, physicians, anyone on the healthcare team. Never underestimate the unique role that you enact in the care of patients with myeloma or other disorders. Use your voice to speak up. If you think a patient is a candidate for a clinical trial but that physician or other provider hasn’t recommended it to them, then tell them why. You can refer them yourself as well. Ask patients about barriers to participation. Is it physical, financial, social? You can’t take time off of work. And then provide that assistance in counseling. It takes a big effort to support our patients, but we would’ve never gotten to where we are with treatment of multiple myeloma in 2024 without patient participation in clinical trials. So whatever we can do to enhance diversity, minimize bias, and support our patients, please try to do the best to do your part.

Dr. Nicole Rochester:

Well, thank you both, Ms. Gordon, Dr. Faiman, for this awesome conversation. We have learned a lot about how we got to where we are with myeloma. And thank you again for pointing out early on, it’s the patients and their caregivers and their participation in clinical trials that has led to the landscape where we are now with so many drugs available. And that really highlights the importance of clinical trials. We talked about diversity of clinical trials. 

We talked about the implicit and explicit biases that all of us have, and that sometimes may preclude us from recommending trials for patients that can benefit from this therapy. And we’ve talked about the importance of having these conversations, not once, not twice, but every time that you are in the presence of a patient and their family. And also just the partnership and the collaboration that has already taken place, and that we hope to continue to foster as we move forward. So thank you both again, and thank you all for tuning in to this Empowering Providers to Empower Patients Program. I’m Dr. Nicole Rochester. 

What Are Follicular Lymphoma Considerations for Watch and Wait?

What Are Follicular Lymphoma Considerations for Watch and Wait? from Patient Empowerment Network on Vimeo.

What do follicular lymphoma patients and providers need to be aware of during watch and wait? Expert Dr. Kami Maddocks from Ohio State University discusses what factors are monitored during watch and wait, common symptoms to be on the lookout for, and who patients can contact about concerns.

See More from START HERE Follicular Lymphoma

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What Should Follicular Lymphoma Patients Know About Remission

What Can Follicular Lymphoma Patients Expect With Remission


Transcript:

Lisa Hatfield:

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:

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:

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 (Rituxan) therapy when there is a disease there, and it is a challenge to think that it’s not being treated.


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What Can Follicular Lymphoma Patients Expect With Remission?

What Can Follicular Lymphoma Patients Expect With Remission? from Patient Empowerment Network on Vimeo.

For follicular lymphoma patients, what can they expect to happen with remission? Expert Dr. Kami Maddocks from The Ohio State University explains how remission can vary among patients and shares an overview of potential treatments.

See More from START HERE Follicular Lymphoma

Related Resources:

What’s the News on Follicular Lymphoma and Bispecific Antibodies

What Should Follicular Lymphoma Patients Know About Remission

What Are Follicular Lymphoma Considerations for Watch and Wait


Transcript:

Lisa Hatfield:

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 antibodies. So rituximab (Rituxan) 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:

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 (Treanda) 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 (Revlimid), 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.


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What Should Follicular Lymphoma Patients Know About Recurrence?

What Should Follicular Lymphoma Patients Know About Recurrence? from Patient Empowerment Network on Vimeo.

When follicular lymphoma recurs, what should patients expect? Expert Dr. Kami Maddocks from The Ohio State University explains recurrence and how recurrence can differ among patients.

See More from START HERE Follicular Lymphoma

Related Resources:

What’s the News on Follicular Lymphoma and Bispecific Antibodies

What Should Follicular Lymphoma Patients Know About Remission

What Are Follicular Lymphoma Considerations for Watch and Wait


Transcript:

Lisa Hatfield:

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.


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What Are Predictors of Follicular Lymphoma Relapse or Transformation?

What Are Predictors of Follicular Lymphoma Relapse or Transformation? from Patient Empowerment Network on Vimeo.

Does follicular lymphoma relapse or transformation have notable predictors? Expert Dr. Kami Maddocks from The Ohio State University shares common symptoms that may signal relapse or transformation and shares her perspective when consulting a follicular lymphoma specialist can be especially helpful. 

See More from START HERE Follicular Lymphoma

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Transcript:

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:

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.


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What Should Follicular Lymphoma Patients Know About Remission?

What Should Follicular Lymphoma Patients Know About Remission? from Patient Empowerment Network on Vimeo.

What does follicular lymphoma remission mean, and what should patients know about it? Expert Dr. Kami Maddocks from The Ohio State University explains remission, functional cure, and immunosuppression.

See More from START HERE Follicular Lymphoma

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Transcript:

Lisa Hatfield:

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:

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?


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What Should Follicular Lymphoma Patients Know About Beauty Products?

What Should Follicular Lymphoma Patients Know About Beauty Products? from Patient Empowerment Network on Vimeo.

What do follicular lymphoma patients need to know about beauty products? Expert Dr. Kami Maddocks from The Ohio State University explains beauty products that can help protect patients from complications and secondary malignancies.

See More from START HERE Follicular Lymphoma

Related Resources:

Understanding Immune System Recovery Post Follicular Lymphoma Treatment

What Follicular Lymphoma Treatment Side Effects Should Patients Expect

What Can Follicular Lymphoma Patients Expect With Remission


Transcript:

Lisa Hatfield:

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.


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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

Related Resources:

When Should Follicular Lymphoma Treatment Begin

When Should Follicular Lymphoma Treatment Begin?

What Should Follicular Lymphoma Patients Know About Beauty Products

What Should Follicular Lymphoma Patients Know About Recurrence


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

Related Resources:

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

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

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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.

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

Related Resources:

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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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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