Tag Archive for: follicular lymphoma relapse

Supporting Follicular Lymphoma Patients in Relapse: Expert Tips for Care Partners

How can follicular lymphoma care partners support patients in relapse? Expert Dr. Kami Maddocks from The Ohio State University Wexner Medical Center discusses questions to ask the doctor and care partner advice to support patients throughout their follicular lymphoma journey.  

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Transcript:

Lisa Hatfield:

So another may possibly be a care partner, Marilyn. How can I best support my loved one during relapse, and what should I do if I notice my husband with new or worsening symptoms?

Dr. Kami Maddocks:

So another great question. I think it’s first of all important to ask the physician about what symptoms to watch for. So you know, are there certain worsening new symptoms or worsening symptoms that seem more likely to be related to follicular lymphoma versus something else. I think it’s always important to encourage your loved one if they are experiencing new symptoms to reach out to the physician so that they can be evaluated. Because follicular lymphoma is a disease that many people live with and many people live with it for many years. We know that patients can experience other things. Not everything is going to be just because of the follicular lymphoma.

So it’s important to be evaluated, and recognize what is going on and what is attributed to the follicular lymphoma. I think being supportive, thinking of questions to ask and making sure that those questions are answered. I think thinking about, are there resources available? I think educating yourself is one of the most important things that people can do. So knowledge is power. So just participating in things like this I think can be very helpful, because learning about what’s out there, knowing that there are many options, I think being supportive and having a positive attitude, are all helpful things.


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Follicular Lymphoma Relapse and Side Effects: Expert Approaches to Care

What’s important for follicular lymphoma patients to know about potential relapse and side effects? Expert Dr. Kami Maddocks from The Ohio State University Wexner Medical Center discusses watchful waiting, potential lymph node involvement, treatment scheduling and side effects, and the meaning of refractory follicular lymphoma.

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Transcript:

Lisa Hatfield:

So before we dive into this Q&A, since this program centers on coping with relapse and managing treatment side effects, how do you approach these first-time conversations with patients and their care partners who are facing relapse and potentially dealing with a new set of side effects due to the changes in their treatment regimen?

Dr. Kami Maddocks:

I think that’s a great question, and I think there are a lot of things to consider. So I think the first thing that we want to think about when we’re talking about patients having relapsed or refractory follicular lymphoma is that just because patients have relapsed or refractory follicular lymphoma doesn’t always mean that they need treatment. So many patients, when they’re initially diagnosed with follicular lymphoma, are going to go through a period of observation or watch and wait where we know that they have follicular lymphoma, but they don’t have symptoms of their disease.

They don’t have a large number of lymph nodes involved, or their lymph nodes are not very large by the scans, and they don’t necessarily need to be treated until they become symptomatic or have certain concerns from their lymphoma that’s causing problems. So the same thing can happen probably more with relapse than necessarily refractory disease, but patients may…you may detect on scans that they have lymph nodes that are growing or that their disease has recurred, but they don’t always necessarily need to receive treatment.

Once you’ve identified that, yes, a patient requires treatment for their relapsed or refractory follicular lymphoma, the next thing to think about is that patient and their disease. So what age is the patient? What were they treated with initially? Because not all patients receive the same initial therapy. So the decision about what they’re going to receive when they relapse is going to be somewhat dependent on what they received for their initial therapy, what side effects they had from that therapy, and how they responded to that therapy.

The next thing is going to be that there is not just one option at relapse so really discussing the different options for those specific patients, and what are the options, what are the side effects of those options, what is the treatment schedule of those options? Because some treatments may have more toxicity, but they’re time-limited, whereas other therapies may be continued to help progression, they may have less toxicity, but over time that’s a toxicity that patients continue to experience on a daily basis.

So really talking to the patient about the options, what does the schedule of that treatment look like? Do they have to come in weekly? Do they have to come in once a month? And then again, the side effects and how that fits into side effects that they had with their initial therapy, how they tolerate that, are any of those side effects still there? For example, if a patient has neuropathy from their therapy, that might be something that lasts and then considering all those things and making an informed decision with the patient.

Lisa Hatfield:

Okay, thank you. And these questions are in the perfect order, because we have a question from Lauren asking you, what is the difference between relapsed and refractory?

Dr. Kami Maddocks:

Okay, this is another great question. I’m sure all these questions are great. When we think of relapsed disease, we think of a patient who’s had therapy, got in a response to that therapy, that response has lasted some time, and then their disease recurs. When we think of refractory, we think of that more as patients that have received a therapy, and they haven’t responded. Now, there is no standard definition of refractory. So we all agree that if a patient gets a treatment and their disease does not respond to that treatment, they’re refractory to that treatment.

But there’s no defined time for which if a patient has a treatment and responds to that treatment but has a short relapse, what’s really considered refractory. In general, a lot of studies that look at a therapy say that if you’ve had it, like if you’ve had rituximab (Rituxan) and you’ve relapsed within a six-month time frame, that that’s refractory. But some studies use three months instead of six months.


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Why Does Follicular Lymphoma Relapse for Some Patients?

What’s important to know about follicular lymphoma relapse symptoms and causes? Expert Dr. Brad Kahl from Washington University School of Medicine discusses how symptoms can vary among patients, theories about relapse causes, and how treatment efficacy is monitored. 

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Transcript:

Lisa Hatfield:

Well, here’s a loaded question for you, Dr. Kahl. Why does relapse happen in the first place, and what are the changes in the body that signal when and if treatment is likely going to fail?

Dr. Brad Kahl:

Boy, we wish we understood why relapse happens in the first place. Last I mentioned, most of these treatments can get people into remission, which means that they can kill the vast majority of the cancer cells, maybe 99.9 percent of them, but for some patients, there’s just a few stubborn cells that remain behind. Maybe those cells are just sitting there, not growing at all, which follicular lymphoma cells can do.

And when the cells are not trying to divide, not trying to grow, they’re kind of protected from killing. They’re just sitting there doing nothing. And so we think it’s this property that how the cells kind of protect themselves. And so these rare cells that are just kind of sitting there, quiescently not growing, not dividing, these might be the cells then that just hang around for years and then contribute to that relapse five years down the road.

But I admit we don’t fully understand why one patient will relapse two years after a treatment, and the next patient is still in remission 10 years later. These are things that we don’t fully understand. Every patient’s lymphoma is a little different, I’m afraid. So two people with follicular lymphoma, they don’t really have the same cancer, cancer, they’re sort of like snowflakes. No two are alike.

And so they can have different mutations inside the cells that’ll make the cancer behave a little differently from one patient to another. It might make it respond to treatment a little differently from one patient to another. And so what is true for one follicular lymphoma patient may not be true for another. And that’s just the way cancer is, I’m afraid. Changes in the body that signal when treatment is likely to fail, I don’t think there are really changes in the body.

I think if a patient has symptoms from their lymphoma, and we start them on treatment we expect their symptoms to go away. So if a patient’s symptoms are not being relieved, that might be a clue that the treatment isn’t working as well as we want it to. And then in some cases, the only way to figure out if a treatment is working is by scanning.

So we’ll have a before picture from a PET scan or a CT scan, and then we’ll take them through a few cycles of treatment, and then we’ll get another scan to prove that the treatment is working like we want it to work. And if it’s not working like we want it to work, then we’ll say, okay, this one isn’t working for you. Let’s go to the what we think is the next best option for you.


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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. 

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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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Newly Diagnosed With Follicular Lymphoma? Start Here

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

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

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

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Transcript:

Lisa Hatfield:

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

Dr. Sameh Gaballa:

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

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

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

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

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

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

Lisa Hatfield:

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

Dr. Sameh Gaballa:

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

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

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


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How Is Relapsed or Transformed Follicular Lymphoma Treated?

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

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

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

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Transcript:

Laura Beth:

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

Dr. Winter:

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

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

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

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

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