Tag Archive for: night sweats

What’s Next for Improving Quality of Life in Polycythemia Vera?

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What are key challenges in myeloproliferative neoplasm (MPN) care, and how do symptoms evolve over time? Expert Dr. Andrew Kuykendall from Moffitt Cancer Center discusses constitutional MPN symptoms, strategies to manage fatigue, neurovascular symptoms, and symptom management. 

[ACT]IVATION TIP

“…we have a variety of symptoms that can be associated with kind of myeloproliferative neoplasms as a whole, as well as each one of these distinct disease entities. And the therapy for each of these differs based on the particular symptom.”

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Related Resources:

How Can Specialists and Support Networks Improve Myeloproliferative Neoplasm Care?

How Can Specialists and Support Networks Improve Myeloproliferative Neoplasm Care?

 Advancing Therapies for Polycythemia Vera: Enhancing Control and Quality of Life

Advancing Therapies for Polycythemia Vera: Enhancing Control and Quality of Life

 Empowering Patients: Enhancing Shared Decision-Making in Myeloproliferative Neoplasm Care

Empowering Patients: Enhancing Shared Decision-Making in Myeloproliferative Neoplasm Care

Transcript:

Lisa Hatfield:

Dr. Kuykendall. I’d like you to speak to some of the key challenges in managing MPN symptoms. So based on the available treatment options, what are the most challenging symptoms associated with polycythemia vera, PV, or myelofibrosis and essential thrombocythemia, ET? And what are we learning about how these symptoms evolve as the disease progresses? 

Dr. Andrew Kuykendall:

When we think about myelofibrosis, that’s probably the disease we associate with the most clear, distinct symptoms. And patients often have what we call “constitutional symptoms.” And this could be fevers, chills, night sweats, bone pain, weight loss. These are classic symptoms of a disease that is really causing a lot of inflammation, right? And driving a lot of these inflammatory pathways, and these types of symptoms are quite well-addressed with JAK inhibitors, these disease specific anti-inflammatories, of which we now have four that are approved for myelofibrosis in different capacities. But there are more symptoms beyond those. I think when we think about polycythemia vera, we get less constitutional symptoms, although that certainly can be seen in a subset of patients.

But we see more itching is probably the classic polycythemia vera symptom. This itching that is quite challenging, doesn’t necessarily respond to antihistamines, and can be something that’s exacerbated by like taking hot showers or being in hot water. There’s a fancy name for it called aquagenic pruritus. And patients may not even be aware this is related to their disease. I’ve met many patients who’ve come in, who’ve been diagnosed with PV who complain of this challenge with showering or being in hot water, who really never put two and two together.

And sometimes the itching isn’t even described as itching. It feels like fire ants all over their body. And you have patients that are really avoiding right, showering. And so they’re doing it maybe once a week or once every two weeks. And so again, this is a symptom that responds quite well to ruxolitinib (Jakafi), which is approved in the second line here.

Beyond that, I think the biggest symptom across myeloproliferative neoplasms is fatigue. And I don’t have great magic tips for fatigue other than to say what we found out is probably non-pharmacologic interventions are better than pharmacologic interventions for fatigue. Things like just making sure you have good sleep hygiene, getting good sleep, healthy diet, exercise, yoga, mindfulness, resting, these probably are more successful in treating fatigue than any specific drug or agent that we have. And I think that speaks to really a failure on our part to develop better therapies. But certainly it’s something that we’re all very well aware of. And so it’s something we monitor in any of our clinical trials when we are developing agents is how does fatigue change over time? And lastly, I’d say for ET I think you can start to see some symptoms that are more kind of neurovascular.

So things like headaches, migraines, ringing in the ears, or tinnitus, or tinnitus. These can be unique to ET and may predate or preempt the actual diagnosis. So a lot of our young patients that are diagnosed with ET may come to attention of physicians because they’ve been dealing with migraines or headaches or fatigue plus migraines and headaches for a long time. Then lo and behold, blood work shows that they have a very high platelet count.

And so over time, I think when we look at these symptoms, certainly there can be waxing and waning of some symptoms, response to therapies, lack of response to therapies. But if the symptoms really do change rapidly, which we don’t see that often, oftentimes this can accompany a change in the disease, right? And that’s the time to go in and see if something’s changed. Sometimes reevaluate the disease status. And so my [ACT]IVATION tip for this is that we have a variety of symptoms that can be associated with kind of myeloproliferative neoplasms as a whole, as well as each one of these distinct disease entities. And the therapy for each of these differs based on the particular symptom.

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Advancing Therapies for Polycythemia Vera: Enhancing Control and Quality of Life

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How are emerging polycythemia vera (PV) treatments addressing quality of life? Expert Dr. Andrew Kuykendall from Moffitt Cancer Center discusses disease control versus quality of life issues for PV patients and shares updates about rusfertide and hepcidin mimetic clinical trials. 

[ACT]IVATION TIP

“…there’s a lot of things that factor into a suboptimal quality of life for patients with PV. And we need to think about all of those as we try to chip away and make patients’ quality of life as good as possible.”

See More From [ACT]IVATED MPNs

Related Resources:

How Can Specialists and Support Networks Improve Myeloproliferative Neoplasm Care?

How Can Specialists and Support Networks Improve Myeloproliferative Neoplasm Care?

 What's Next for Improving Quality of Life in Polycythemia Vera?

What’s Next for Improving Quality of Life in Polycythemia Vera?

 Empowering Patients: Enhancing Shared Decision-Making in Myeloproliferative Neoplasm Care

Empowering Patients: Enhancing Shared Decision-Making in Myeloproliferative Neoplasm Care

Transcript:

Lisa Hatfield:

Dr. Kuykendall, since current treatments may help control polycythemia vera but don’t significantly improve symptoms, what steps are being taken to develop new therapies that not only control PV, but also improve patients’ overall quality of life? 

Dr. Andrew Kuykendall:

Yeah, so right now the therapies we have for polycythemia vera essentially the main goal is to reduce as I tell patients, to reduce the things that could kill you, right? To reduce the risk of thrombotic events, cardiovascular events, strokes, blood clots, heart attacks, things like that. As we know that that is a huge issue for these patients that are at increased risk for cardiovascular events.

So we do that with a variety of different strategies, but I think increasingly what we’re realizing is we need to make a primary focus of treatment being on improving and maximizing quality of life. And this is something that really we should be thinking about across all malignancies. But specifically polycythemia vera (PV), where this is a disease that if we are able to avoid some of these cardiovascular events, patients have a very good quantity of life expected with their disease.

So they may live with their disease for 15, 20, 30 years. So if that’s the case, we really need to be thinking about how we can do that as best as possible, right? We’re talking about a third of your life living with this disease. And so we need to do that in a quality way. So agents like ruxolitinib (Jakafi) that have been approved for polycythemia vera in the second-line setting.

Ruxolitinib is known that it is improving some of the disease-related symptoms that come with PV, fevers, chills, itching, night sweats, bone pain really does help with those things. But I think that we can move beyond that. And we’re developing agents like rusfertide. Rusfertide is the hepcidin mimetic that is aiming to reduce the amount of phlebotomies patients need. And for me, that’s important in a variety of ways.

One if you don’t need to get phlebotomies all the time, you’re not tied to the healthcare system, right? Nearly as much. And that could be a huge dissatisfactor. And so at the same time, getting a phlebotomy is not that fun either. It requires going in and sitting there getting blood drawn, you may get lightheaded, fatigued that comes with that.

So eliminating that aspect of negative quality of life. At the same time, we’re starting to see with rusfertide whispers that it may help with some of these symptoms that may be related to iron deficiency. Things like brain fog, concentration issues, fatigue. And so if we can help a little bit with that aspect of things too, man, we could start to kind of, you know, chip away at some of the quality of life issues that are ongoing.

And then down the road, I think some of these JAK2-specific inhibitors may have the continued ability to modify the underlying disease. And certainly that’s a huge goal, right? If we can actually start to get true responses really get at the core of the disease to get the disease to go away. And I think that ultimately that will hopefully result in better quality of life as well. So, at the same time, I think my [ACT]IVATION tip for this question is that there’s a lot of things that factor into a suboptimal quality of life for patients with PV. And we need to think about all of those as we try to chip away and make patients’ quality of life as good as possible.

Lisa Hatfield:

Okay. Thank you. And is there any hope of any of these newer therapies being of limited duration, or are all of them continuous therapy? Because I know as a patient myself, that quality of life is impacted by knowing that I’ll be on therapy forever, some kind of therapy forever. Any hope for that? 

Dr. Andrew Kuykendall:

Yeah, so certainly with some agents there is hope for that. So some of the agents I referenced, ruxolitinib, rusfertide, these are agents that probably are, are going to be continued therapy. We always call it indefinite, right? As long as we think that the benefits outweigh the risks, we continue that. If we stop those, typically the reasons we’re using them, those come back quite quickly.

But I would say it’s not necessarily the case with agents like interferon. So interferon is an agent that’s less associated with symptomatic improvement, although we do see it in a subset of patients, it’s more associated with the ability to potentially modify the underlying disease. And so what we’ve seen with interferon is that we can measure patients’ JAK2 allele burdens, the number of cells that have the JAK2 mutation that drives the disease.

And in patients that are on interferon for 2, 3, 4 years, we see the number of cells that have the JAK2 mutation go down over time quite consistently. And even in the case that in some patients it goes less than 10 percent or to a level, we really can’t pick it up with our standard testing. And my experience with that is we can actually stop interferon in some of these patients for a pretty extended period of time.

So we have patients where we stopped for one or two years with blood counts that remain quite well-controlled, patients feeling well. In time, we might have to restart it as things start to to pop up, but I think that we are starting to get to these kind of at least treatment reductions, dose reductions where we can spread things out, but also kind of brief treatment interruptions where we get this kind of treatment-free period that certainly can be attractive to some patients.

Lisa Hatfield:

Okay. Thank you. And I’ll just do a quick shoutout to physicians like yourself who deal primarily with MPNs or work a lot with MPNs, that if a patient is watching this and doesn’t have somebody who really specializes in MPNs, everything you’re talking about, clinical trials, it might be helpful even to just get a consult or what I call an expert or second opinion on how to manage your MPNs. So anyway, thought I’d throw that out there. Thank you.

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Newly Diagnosed Follicular Lymphoma and Treatment Options

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What are the approaches to newly diagnosed follicular lymphoma and treatment options? Expert Dr. Brad Kahl from Washington University School of Medicine discusses common follicular lymphoma symptoms, patients who experience no symptoms, watch and wait, and follicular lymphoma treatment options.

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See More from START HERE Follicular Lymphoma

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What Is Follicular Lymphoma Exactly?

 Emerging Therapies in Relapsed Follicular Lymphoma: What’s Next?

Emerging Therapies in Relapsed Follicular Lymphoma: What’s Next?

Transcript:

Lisa Hatfield:

So, Dr. Kahl, you also mentioned treatments and how oftentimes it’s not a cancer where you can just remove the cancer. Can you talk about some of the exciting developments with treatments and new innovative therapies, and what are the most important highlights for patients and families?

Dr. Brad Kahl:

Yeah. There’s a lot to talk about here. So I’ll start with how we approach a newly diagnosed patient, and then we’ll go into how we approach patients who have relapsed disease. So the most often, or the most common way a follicular lymphoma patient comes to medical attention is they just either notice a lump from an enlarging lymph node, or some enlarged lymph nodes are just found incidentally, because they’re having some testing for some other condition.

And so, like I said, very often patients don’t have symptoms. That’s very typical. Occasionally, the patients will have symptoms, and those symptoms might be pain from a large lymph node mass that’s pushing on something. Occasionally, they might have fevers or night sweats. They wake up in the middle of the night just drenching wet, or unexplained weight loss. Those would be symptoms that can occur in follicular lymphoma. But most patients who come to see us for the first time don’t have symptoms.

When we have a newly diagnosed patient and it takes a biopsy to make the diagnosis, we then need to do the staging evaluation. So that involves some sort of imaging. And nowadays that’s usually in the form of what’s called a PET scan, which gives us a good snapshot of the whole body. And it’ll show us enlarged lymph nodes. And then the PET portion of the scan will show us if the lymph nodes are metabolically more active.

So they show up as these bright spots on the PET scan. And that’s what allows us to stage the patient. It tells us where the disease is located and how much of the disease we see. And so I’m often telling patients, I don’t worry so much about the stage. I worry more about the disease burden. So the way I explain that to patients is, suppose I could take all the follicular lymphoma cells out of your body, and I made a pile. How big is the pile? And that’s actually, I think, more important than the stage in determining our initial strategy.

Because believe it or not, if we have a patient who comes to us with a new diagnosis of follicular lymphoma and they have no symptoms, and it turns out that their tumor burden is very low, we often will recommend an initial approach of no treatment, which is a strange thing for patients to hear. And we spend a lot of time trying to explain the rationale for that. So I’ll try to explain that to you now. Follicular lymphoma is hard to cure. So it’s this weird cancer in that it’s slow-moving. It often doesn’t make people sick, and we have good treatments for it, but curing it, like making it go away once and for all, proves to be kind of difficult.

And studies in the past have shown if you have a patient who has no symptoms and is low tumor burden, that their prognosis is just as good if you leave them alone at the beginning. And many patients will not need any treatment at all for two years, three years, five years. I even have follicular lymphoma patients who I’ve been observing for more than 10 years that have never needed any treatment.

About two out of every 10 patients that are newly diagnosed can go 10 years without needing any treatment. So that’s why we’ll start that strategy for some patients. And that psychologically can be difficult for patients. You’re telling me I’ve got a new cancer diagnosis. You’re saying you have good treatments for it. And yet you’re saying you don’t want to use any of those treatments. And so it takes a lot of talking and explaining to try to get people comfortable with that.

Some people never get comfortable with that, I admit it. But some people get very comfortable with it. But it is a very appropriate initial strategy for a low tumor burden asymptomatic person just to observe and get a handle on the pace of the disease. If the disease starts to grow, or if the patient starts to get symptoms, we can start our treatment at that time. And the treatment is going to work just as well as it would have had if we started it last year, or two years ago.

So we feel like we’re putting the patient in no harm, no risk of harm by starting on this strategy of a watch and wait. On the other hand, some patients have high tumor burden, they have a lot of disease, or they have symptoms. And for those patients we need to start them on treatment, because the treatment can put them in remission and get them feeling better. Right now, the most common frontline treatment in follicular lymphoma will be a combination of some chemotherapy and some immunotherapy.

The most commonly used regimen in the United States right now is a two drug regimen, a chemotherapy drug called bendamustine (Treanda), and an immunotherapy drug called rituximab (Rituxan). And you give that treatment every 28 days for six months. And it’ll put 90 percent of people into remission. And on average, those remissions last five-plus years. And it’s a very, very tolerable treatment. It’s not too bad as far as chemotherapy goes. There’s no, most people don’t lose their hair. They don’t get peripheral neuropathy that sometimes chemotherapy drugs give.

It’s not too bad for nausea and things like that. I’m not saying it’s easy or it’s fun. It’s none of that. But as far as chemo goes, it’s not too bad. And it’s effective, it is very effective. And I’ve given that treatment, and I have people who are still in their first remission 10 years later, so you can get, for some people can get these really long remissions. 

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Helping Rural Doctors Recognize Myelofibrosis | How Patients and Providers Can Work Together

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How can myelofibrosis patients and providers collaborate in helping rural doctors? Expert Dr. Michael Grunwald from Levine Cancer Institute discusses common myelofibrosis symptoms and proactive patient advice for educating themselves and their providers about symptoms and care.

[ACT]IVATION TIP

“…patients with newly diagnosed myelofibrosis and longstanding myelofibrosis can help educate primary care physicians about the disease. Often, primary care physicians want to be able to partner with specialists in the care of complex conditions.”

Download Guide | Descargar Guía

See More From [ACT]IVATED Myelofibrosis

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How Does Risk Stratification Shape Myelofibrosis Treatment?

 Novel Therapies and Clinical Trials for Myelofibrosis | Updates and Innovations

Novel Therapies and Clinical Trials for Myelofibrosis | Updates and Innovations

 Barriers to Accessing Specialized Myelofibrosis Care in Rural Areas | Challenges and Solutions

Barriers to Accessing Specialized Myelofibrosis Care in Rural Areas | Challenges and Solutions

Transcript:

Lisa Hatfield:

Dr. Grunwald, given how rare this disease is, how can primary care physicians in rural areas be better equipped to recognize and refer patients with suspected myelofibrosis? And what topics, in terms of questions, should patients be asking their primary care providers in rural areas?

Dr. Michael Grunwald:

I think the answer lies in education. It is difficult for primary care physicians to keep up with all organ systems, all diseases. I think it’s important for us as hematologists, for the hematology field, to let primary care providers know the signs of myelofibrosis and also the fact that treatment has become more nuanced and complex in recent years with multiple new therapies available. It also helps if patients educate themselves and educate their providers. So some of the signs, some of the initial signs of myelofibrosis can include splenomegaly, unexplained symptoms such as itching, night sweats, and/or bone pain, sometimes fatigue.

And if patients experience those symptoms, they can seek out primary care help to have their blood tested. Oftentimes, myelofibrosis patients will have abnormalities that are detectable on the peripheral blood with a CBC, a complete blood count with differential. Patients who know that they have myelofibrosis can help teach their primary care providers about their journey in MF care, thereby increasing knowledge and letting providers know how far myelofibrosis care has come. So I think hematologists and patients can work together to try to teach primary care providers about this disease.

My [ACT]IVATION tip for this question is patients with newly diagnosed myelofibrosis and long-standing myelofibrosis can help educate primary care physicians about the disease. Often, primary care physicians want to be able to partner with specialists in the care of complex conditions.

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What Are Follicular Lymphoma Considerations for Watch and Wait?

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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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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 Are Predictors of Follicular Lymphoma Relapse or Transformation?

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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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 What Are Follicular Lymphoma Considerations for Watch and Wait

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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Follicular Lymphoma Disease Transformation and Secondary Cancer Risk

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

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

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

See More from START HERE Follicular Lymphoma

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Relapsed/Refractory Follicular Lymphoma Treatments and Bispecific Antibodies

Relapsed/Refractory Follicular Lymphoma Treatments and Bispecific Antibodies

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 Understanding Follicular Lymphoma Disease Progression Symptoms and Monitoring

Transcript:

Lisa Hatfield:

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

Dr. Sameh Gaballa:

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

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

Lisa Hatfield:

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

Dr. Sameh Gaballa:

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

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Understanding Follicular Lymphoma Disease Progression Symptoms and Monitoring

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

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

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

See More from START HERE Follicular Lymphoma

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Follicular Lymphoma Disease Transformation and Secondary Cancer Risk

Follicular Lymphoma Disease Transformation and Secondary Cancer Risk

 Relapsed/Refractory Follicular Lymphoma Treatments and Bispecific Antibodies

Relapsed/Refractory Follicular Lymphoma Treatments and Bispecific Antibodies

 How Can Follicular Lymphoma Treatment Side Effects Be Reduced?

Transcript:

Lisa Hatfield:

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

Dr. Sameh Gaballa:

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

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

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

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

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

Lisa Hatfield:

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

Dr. Sameh Gaballa:

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

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Is It Aging or My CLL?

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Is It Aging or My CLL? from Patient Empowerment Network on Vimeo.

How can chronic lymphocytic leukemia (CLL) patients tell the difference between treatment side effects and normal aging issues? Expert Dr. Ryan Jacobs explains his perspective when fatigue is the only issue for the patient versus patients having multiple symptoms.

Dr. Ryan Jacobs is a hematologist/oncologist specializing in Chronic Lymphocytic Leukemia from Levine Cancer Institute. Learn more about Dr. Jacobs.

Download Resource Guide   |  Descargar Guía en Español

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Transcript:

Lisa Hatfield:

A patient had asked, and I love this question because I often wonder myself when I get up in the morning, my bones are creaking and popping, “How do you know the difference between,” this patient’s talking about fatigue. How does a patient discern, “Well, this is fatigue from my cancer or my treatment,” versus just normal aging? Whether it’s fatigue or bruising or any side effect.

Dr. Ryan Jacobs:

Yeah. Fatigue is a really…I had an attending physician when I was in my training that said, “Treating fatigue makes me fatigued.” But it’s hard. If it’s really the only problem the CLL patient is having, it can be…all those other problems I had mentioned earlier, the low red cells, the low platelets, the painful nodes, the night sweats, I with close to 100 percent certainty know I can fix those with treatment.

Fatigue, I’m not as confident when that’s the only issue that a patient’s having. I try to differentiate between fatigue from other causes and old age, and specifically to CLL. They try to put it as a metric and say, if you’re having to spend half the day or more just lying around and you’re not able to do your normal activities of daily living, like that’s a severe level of fatigue and treatment should be considered. I’m looking for somewhat of a precipitous decline, not necessarily just kind of the gradual fatigue that you might more relate to aging.

The problem with treating fatigue is you’ll look, if you look at the possible side effects of all of these medicines I talked about, fatigue will be a potential side effect. So you’re sometimes trading one problem and getting another, or maybe the fatigue does get better, but then the patient has some different side effect that’s even worse than the fatigue. So it’s hard to really help when fatigue’s the only issue. But certainly, I have helped some patients with fatigue. We don’t have a test that we can do to know for sure is the fatigue coming from the cancer, or is it coming from something else.

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Can Mobile Health Apps Lower the Burden of MPN Symptoms?

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Can Mobile Health Apps Lower the Burden of MPN Symptoms? from Patient Empowerment Network on Vimeo.

How can the burden of myeloproliferative neoplasm (MPN) symptoms be lessened through the use of mobile health apps? Blood cancer patient Lisa Hatfield shares common MPN symptoms that patients experience and explains wellness strategies and mobile app study results that decreased the symptom burden for patients.

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Transcript:

Lisa Hatfield:  

As an MPN patient, you might experience symptoms like fatigue, night sweats, difficulty sleeping, abdominal discomfort, bone pain and others. However, early data using integrative approaches for the treatment of MPNs are promising, including aerobic activity, yoga, meditation, and strength training, to reduce the symptom burden and improve inflammation. With the evolution of smartphone technology, mobile apps have been increasingly popular to document wellness strategies. With this in mind, the University of Arizona Andrew Weil Center for Integrative Medicine developed and successfully piloted a global wellness mobile app, My Wellness Coach (MWC), to guide MPN patients on self-management strategies for their symptom burden. 

The app had patients set at least two wellness goals with clear action steps within these seven areas: nutrition, movement, sleep, resilience, environment, relationships and spirituality to work on over the course of 12 weeks. Within the app, there were links to curated resources and tips. Participants were sent 24- to 72-hour interval reminders before and after each action step and a goal deadline to encourage action throughout the intervention. At the end of the study, improvements were observed in inactivity, impaired concentration, dizziness, numbness, sexual dysfunction, night sweats, bone pain, and quality of life. 

If you’d like to implement something similar to what the participants did, try the following: 

  • Reflect on why you want to change your symptom burden so you feel motivated  
  • Determine which of these categories: nutrition, movement, sleep, resilience, environment, relationships, and spirituality would you like to set goals in 
  • Create two goals from those categories and make them SMART- specific, measurable, attainable, relevant, and time-bound. 
  • Utilize resources available to you through support groups or online tools 
  • Set reminders on your phone or calendar for each step you need to take to complete your SMART goals

Mobile-based apps are another example of how MPN patients can use telemedicine in their day-to-day life and improve care.

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How Is Follicular Lymphoma Diagnosed and How Does It Progress?

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How Is Follicular Lymphoma Diagnosed and How Does It Progress? from Patient Empowerment Network on Vimeo.

Follicular lymphoma expert Dr. Jane Winter explains common symptoms, tests involved in diagnosis, and how the disease may progress over time.

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, how is follicular lymphoma typically diagnosed? 

Dr. Winter:

So, most often, it’s because of a new lump or bump that a patient notes, perhaps a lump in the neck, but also increasingly these days, many individuals wind up getting CT scans. Belly pain for which they go to the emergency room or something to evaluate another diagnosis, maybe some blood in the urine related to a totally different issue. But CT scans often reveal, enlarged lymph nodes or lymph nodes that are borderline and of concern. 

And this will lead to investigation, ultimately, a biopsy, and a diagnosis of follicular lymphoma.  

Laura Beth:

How does follicular lymphoma typically progress?  

Dr. Winter:

So, to start with, most commonly, patients have low burden disease these days, but some adverse diagnosis will have very extensive disease, a big mass in the abdomen, disease in the chest, so, highly variable. For patients who begin with low burden disease, small lymph nodes that are not bothersome, we generally observe these patients. 

And over time, these lymph nodes may begin to grow, and sometimes slowly, sometimes more rapidly to the point where they cause symptoms or are of concern because they’re cosmetically unattractive. There are occasional times where it’s a lump in the neck that just results in too many inquiries from others. So, that’s when we start thinking about maybe it’s time to start some treatment. So, progression, enlargement, sometimes it’ll be the beginning of symptoms. So, most patients with follicular lymphoma, at least in North America, don’t generally have symptoms at presentation, but B symptoms.  

So, fevers, drenching night sweats, and by that, I mean sweats at night that lead to changing your T-shirt, changing the sheets or the nightgown, not the typical middle-aged woman with a hot flash. But, by drenching night sweats, we mean drenching. Unintentional weight loss. So, these are some of the symptoms that one can see, we call them B symptoms, we can see in patients with follicular lymphoma and other lymphomas as well that may signal progression. 

What Are Common Symptoms of DLBCL?

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What Are Common Symptoms of DLBCL? from Patient Empowerment Network on Vimeo.

What symptoms could diffuse large B-cell lymphoma (DLBCL)patients experience? Dr. Kami Maddocks defines DLBCL and explains the diagnosis, symptoms, sub-types and progression of the disease.

Dr. Kami Maddocks is a hematologist who specializes in treating patients with B-cell malignancies at the The Ohio State University Comprehensive Cancer Center – The James. Learn more about Dr. Maddocks.

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Transcript:

Katherine:

Now, let’s learn more about DLBCL. For those who may be newly diagnosed, what is it?  

Dr. Maddocks:

Diffuse large B-cell lymphoma is a type of non-Hodgkin’s lymphoma. So, this is considered a blood cancer. Lymphomas are a cancer of the lymphocyte, which is one of the types of blood cells that form your immune system. So, when you think about your nodes, these are part of the cells that help fight different types of infection. So, diffuse large B-cell lymphoma is one of the types of non-Hodgkin’s lymphomas, it’s aggressive, and it is considered an aggressive form of lymphoma. And it’s when you get a cancer of those lymph cells that often involved the lymph nodes but could also involve bone marrow, blood cells, other sites outside of the lymph nodes.  

Katherine:

Do we know what causes DLBCL?  

Dr. Maddocks:

For the most part, we don’t know what causes diffuse large B-cell lymphoma. So, most of the time, it’s going to arise with patients not having risk factors. We know that age is the most common risk factor with the median diagnosis of a patient in their 60s.  

Although, we also know that diffuse large B-cell lymphoma, why it’s more common to be diagnosed later in life, can occur across all the age spectrum. So, you see this in pediatric adolescents, young adults, and older adults. There are some causes. These represent more than minority of cases but certain viruses, including HIV virus, can be associated with the development of lymphoma. Certain other medical conditions, like rheumatologic conditions and some of the treatments for these, can be associated, and then, some chemical exposures. But in general, most of the time, we’re not going to have an identified cause.  

Katherine:

What are the symptoms?  

Dr. Maddocks:

They can look a little bit different for different patients. So, because this is often a cancer, most of the time there will be lymph node involvement. For some patients, they can actually feel or somebody will see a lymph node that grows. Most of the time, when this occurs, it’s going to be in the neck, under the armpits, or in the groin area.  

Patients can start to have symptoms from other sites, of those lymph nodes growing or disease so that they can get pain or shortness of breath. Or they can have what’s called B symptoms. So, B symptoms are inflammatory like symptoms from the lymphoma, and these include weight loss. So, a rapid change in weight for no reason. Night sweats. So, daily night sweats, we call them drenching night sweats. They wake up the patient, they soak their clothes, sometimes they soak the whole bed. And then, fatigue. So, extreme fatigue, not able to do your daily activities. And then, occasional people will have cyclical fevers.  

Katherine:

Are there different types of DLBCL?  

Dr. Maddocks:

So, in general, diffuse large B-cell lymphoma, there’s one major subtype. You can divide it into different pathological or molecular subtypes.   

So, where the cell develops lymphoma during the cell’s development, there are different chromosome abnormalities. So, there are different categorizations but in general, diffuse large B-cell lymphoma itself is considered – it’s treated, often, the same even with these different subtypes. So, there are different subtypes but in general, they’re all considered a form of diffuse large B-cell lymphoma.   

Katherine:

They’re under this umbrella of DLBCL.  

Dr. Maddocks:

Yeah. Yeah.   

Katherine:

Yeah.

Do patients usually get diagnosed after they experience some symptoms?  

Dr. Maddocks:

So, because this is an aggressive lymphoma, there are a lot of patients that will have symptoms with this, and that’s how they’ll present via either noticing the lymph nodes, having the B symptoms, or having pain, or other abnormalities from the lymphoma progressing.   

Occasionally, whereas indolent lymphoma is more commonly found of incidentally. Occasionally, that’ll be the case with these, but I would say a fair number of patients have some sort of symptom or something that brings them to medical attention.  

Katherine:

How does DLBCL progress?  

Dr. Maddocks:

So, they’re different, as far as there’s more aggressive and less aggressive. So, some patients can develop symptoms, really, over days to weeks. Whereas, some patients are more weeks to months.  

What Is the Patient’s Role in Their DLBCL Care?

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What Is the Patient’s Role in Their DLBCL Care? from Patient Empowerment Network on Vimeo.

How can patients engage in their DLBCL care? Expert Dr. Kami Maddocks explains how disease-specific education empowers patients, and stresses the importance of patients playing an active role in decisions.

Dr. Kami Maddocks is a hematologist who specializes in treating patients with B-cell malignancies at the The Ohio State University Comprehensive Cancer Center – The James. Learn more about Dr. Maddocks.

See More From The Pro-Active DLBCL Patient Toolkit

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Transcript:

Katherine:

Now, let’s learn more about DLBCL. For those who may be newly diagnosed, what is it?  

Dr. Maddocks:

Diffuse large B-cell lymphoma is a type of non-Hodgkin’s lymphoma. So, this is considered a blood cancer. Lymphomas are a cancer of the lymphocyte, which is one of the types of blood cells that form your immune system. So, when you think about your nodes, these are part of the cells that help fight different types of infection. So, diffuse large B-cell lymphoma is one of the types of non-Hodgkin’s lymphomas, it’s aggressive, and it is considered an aggressive form of lymphoma. And it’s when you get a cancer of those lymph cells that often involved the lymph nodes but could also involve bone marrow, blood cells, other sites outside of the lymph nodes.  

Katherine:

Do we know what causes DLBCL?   

Dr. Maddocks:

For the most part, we don’t know what causes diffuse large B-cell lymphoma. So, most of the time, it’s going to arise with patients not having risk factors. We know that age is the most common risk factor with the median diagnosis of a patient in their 60s.  

Although, we also know that diffuse large B-cell lymphoma, why it’s more common to be diagnosed later in life, can occur across all the age spectrum. So, you see this in pediatric adolescents, young adults, and older adults. There are some causes. These represent more than minority of cases but certain viruses, including HIV virus, can be associated with the development of lymphoma. Certain other medical conditions, like rheumatologic conditions and some of the treatments for these, can be associated, and then, some chemical exposures. But in general, most of the time, we’re not going to have an identified cause.  

Katherine:

What are the symptoms?  

Dr. Maddocks:

They can look a little bit different for different patients. So, because this is often a cancer, most of the time there will be lymph node involvement. For some patients, they can actually feel or somebody will see a lymph node that grows. Most of the time, when this occurs, it’s going to be in the neck, under the armpits, or in the groin area.  

Patients can start to have symptoms from other sites, of those lymph nodes growing or disease so that they can get pain or shortness of breath. Or they can have what’s called B symptoms. So, B symptoms are inflammatory like symptoms from the lymphoma, and these include weight loss. So, a rapid change in weight for no reason. Night sweats. So, daily night sweats, we call them drenching night sweats. They wake up the patient, they soak their clothes, sometimes they soak the whole bed. And then, fatigue. So, extreme fatigue, not able to do your daily activities. And then, occasional people will have cyclical fevers.  

Katherine:

Are there different types of DLBCL?  

Dr. Maddocks:

So, in general, diffuse large B-cell lymphoma, there’s one major subtype. You can divide it into different pathological or molecular subtypes.  

So, where the cell develops lymphoma during the cell’s development, there are different chromosome abnormalities. So, there are different categorizations but in general, diffuse large B-cell lymphoma itself is considered – it’s treated, often, the same even with these different subtypes. So, there are different subtypes but in general, they’re all considered a form of diffuse large B-cell lymphoma.  

Katherine:

They’re under this umbrella of DLBCL.  

Dr. Maddocks:

Yeah. Yeah.  

Katherine:

Yeah. Do patients usually get diagnosed after they experience some symptoms?  

Dr. Maddocks:

So, because this is an aggressive lymphoma, there are a lot of patients that will have symptoms with this, and that’s how they’ll present via either noticing the lymph nodes, having the B symptoms, or having pain, or other abnormalities from the lymphoma progressing.  

Occasionally, whereas indolent lymphoma is more commonly found of incidentally. Occasionally, that’ll be the case with these, but I would say a fair number of patients have some sort of symptom or something that brings them to medical attention.  

Katherine:

How does DLBCL progress?  

Dr. Maddocks:

So, they’re different, as far as there’s more aggressive and less aggressive. So, some patients can develop symptoms, really, over days to weeks. Whereas, some patients are more weeks to months.  

What Are Common MPN Symptoms?

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What Are Common MPN Symptoms? from Patient Empowerment Network on Vimeo.

Dr. Jeanne Palmer, an MPN specialist, reviews the most common symptoms associated with essential thrombocythemia (ET), polycythemia vera (PV), and myelofibrosis (MF).

Dr. Jeanne Palmer is a hematologist specializing in myeloproliferative neoplasms (MPNs) and bone marrow transplant at the Mayo Clinic in Arizona. Dr. Palmer also serves as Director of the Blood and Marrow Transplant Program and is Vice Chair and Section Chief for Hematology. Learn more about Dr. Palmer, here.

 

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Transcript:

Katherine Banwell:

Would you walk us through the common symptoms of each of the MPNs? Let’s start with essential thrombocythemia. 

Dr. Jeanne Palmer:

Right. So, there are a number of shared symptoms throughout all the diseases and when we start to figure out how to categorize them, they call into several different categories. The first one is inflammation-related symptoms. We know that the inherent pathway that’s dysregulated or that causes these diseases to happen can also result in significant inflammation in a person, that can result in things like fevers, night sweats, weight loss, and overall feeling really fatigued and poorly, which is something that it seems to be much more prevalent in patients with MPNs, all sorts of them, actually. 

The next set of symptoms is related to microvasculature, so all the little blood vessels. And sometimes we think, oh, maybe that’s because there’s too many red blood cells or platelets and the blood become viscous. It’s probably more related to the actual dysregulation of that JAK2 pathway, which is inherent to all the myeloproliferative diseases and as a result, the little blood vessels can clamp down and that can give people headaches, visual changes, numbness and tingling in the hands and feet, and even can cause sort of a painful rash called erythromelalgia in the body. 

So, these are things that can happen that are probably less appreciated side effects of the disease. And finally, there’s spleen-related symptoms. The spleen is in the left upper quadrant of the abdomen and it’s an organ that generally is about 12 centimeters in length, 10 to 12, but in patients with myeloproliferative diseases it can be enlarged. And as a result of an enlarged spleen people can have feeling like they get fuller early. So, if you’re eating a meal, all of the sudden you can only eat half of that meal versus the whole meal. 

Discomfort or pain in the left upper quadrant. Sometimes it’s much more noticeable when you like bend over to tie your shoes. And then sometimes people can actually, when the spleen gets really big, the blood flow can be impaired towards the end of it which can cause some of the spleen tissue to die, and that can be painful. So, these are things that if somebody does start to notice that they’re having fullness in the left upper quadrant, pain, stuff like that, that that may be related to spleen symptoms.  

Katherine Banwell:

What about PV or polycythemia vera, what are the symptoms? 

Dr. Jeanne Palmer:

So, all of these sorts of relate to all of the myeloproliferative diseases. So, one other one that I didn’t mention, and this is actually more in PV than others, is itching. Itching can be absolutely unbearable when somebody has PV. It’s particularly noticeable after taking a shower. So, a lot of times I’ve met patients who are like I haven’t been able to take a shower in years, because it causes such a high degree of itching. 

Katherine Banwell:

Why a shower? Is it different from having a bath?  

Dr. Jeanne Palmer:

Water on the body that can cause the problem. So, if people take hot showers, it’s even worse. Although I think that people sort of react to it differently. Usually what patients end up doing is more like sponge bath type of things, rather than actually being exposed to the water. 

 Taking colder showers or cooler showers can sometimes help mitigate that. But the itching, and even in the absence of a shower, people can have pretty severe itching, and that can also be one of the major side effects. 

What Are the Current CLL Treatment Options?

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What Are the Current CLL Treatment Options? from Patient Empowerment Network on Vimeo.

When is it time to treat CLL, and what are the current options? Dr. Jean Koff, from the Winship Cancer Institute of Emory University, reviews available CLL treatment approaches and discusses patient-specific factors that she considers when choosing therapy.

Dr. Jean Koff is an Assistant Professor in the Department of Hematology and Oncology at Winship Cancer Institute of Emory University. Learn more about Dr. Koff, here.

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Transcript:

Katherine Banwell:

Many patients are overwhelmed by the different types and classes of treatment. When is it time to treat CLL, and what are the options? 

Dr. Jean Koff:

So, I boil down the criteria to when you need to treat your CLL to two main categories. One category is that the disease is progressing quickly, and the other category is the disease is causing problems of some kind, or getting ready to cause problems of some kind. Those are some of the broad categories that we think about when it’s time to start treatment for CLL. Now, this – the groups that research CLL have put out various criteria that help guide physicians about when it’s time to start treatment, and some of those more specific criteria include items like symptoms. So, symptoms are a very important part of that decision-making process.   

And the same symptoms that we mentioned, the B symptoms, fevers, chills, night sweats, weight loss that’s unintentional, or lymph nodes that you can feel, those would potentially be reasons that your doctor would want to start you on CLL therapy. But the CLL can cause issues even in a patient who’s not necessarily having symptoms. So, one of the most common ways that CLL can cause issues is the CLL cells can cause your other blood cells, the normal blood cells, to be low in number. There are several ways the CLL cells can do this. One of the most common ways is that the CLL cells, which are often circulating through your bloodstream, can also collect or overrun your bone marrow.  

And if you think about it, the bone marrow is the factory that makes all of your blood cells. So, when there are too many CLL cells in the bone marrow, they can crowd out the normal blood cells, like red blood cells or platelets. So, when red blood cells or platelets get low beneath certain thresholds, that’s a reason to start CLL therapy. 

Katherine Banwell:

Mm-hmm.   

Dr. Jean Koff:

So, there are a couple other criteria that we think about. CLL cells can collect in other areas, including the spleen. So – and if you remember, the spleen is a lymphoid organ that sits on the left side of your body that is right below the stomach. And so, if CLL cells collect in the spleen, they can cause it to be too big, it can press on the stomach, it can make it so you feel full, even if you haven’t eaten a full meal, that’s something we call early satiety. It can be uncomfortable, causing some abdominal pain. And if the spleen gets really, really big, it can cause it to not be able to do its normal job, which is to filter out the normal blood cells like it does every day. And so, that would be a reason to start therapy as well. And then the last – the last category I would think about is in CLL we have lots of – of CLL cells that are circulating in the blood that we can check with a routine blood count. And the absolute number of CLL cells is not as important as how fast that number is growing. So, your physician will track how fast that number of CLL cells is doubling.  

And if you meet criteria for what we call rapid doubling time, which is usually thought of as less than 12 months but certainly less than six months. So, if your count goes from 30,000 to 60,000 in under six months, then it may be time for you to start thinking about therapy. 

Katherine Banwell:

Right. So, Dr. Koff, would you briefly review the treatment classes? 

Dr. Jean Koff:

So, for first-line treatment, we have two main treatment classes that we think about at this time. The first is – is called BTK inhibitors, which is Bruton tyrosine kinase inhibitors. And these are oral medications, so medications that you take by mouth, and the most well-studied of these is called ibrutinib (Imbruvica), we typically prescribe ibrutinib by itself. There are other BTK inhibitors we are also now using in this space, one of them is called acalabrutinib  (Calquence), and that is often given with an IV monoclonal antibody called obinutuzumab (Gazyva).   

The other main class of drugs that we consider for first-line treatment of CLL is the BCL-2 inhibitors. Right now there’s only one BCL-2 inhibitor that’s approved for CLL and front-line and it’s called venetoclax (Venclexta). Usually, this drug is also given in the front-line with an anti-CD20 monoclonal antibody. So, the venetoclax itself is a pill you take. And the monoclonal antibody is an – either an IV or a subcutaneous injection.  

Katherine Banwell:

Where do clinical trials fit into CLL treatment? 

Dr. Jean Koff:

So, clinical trials are part of the reason, a big part of the reason that we’ve been able to make so much progress in how we treat CLL over the past few years. Clinical trials are how we figure out what treatments work for CLL, how patients feel on them, what sort of adverse events or side effects they have on individual treatments, and which treatments do better for keeping CLL symptoms under control, keeping the disease under control, and allowing patients to live longer and have a higher quality of life with their disease.   

Katherine Banwell:

Are there any other options available for CLL patients?  

Dr. Jean Koff:

So, there are other options. A clinical trial, if that is available to you as a patient is nearly always a good thing to consider if you have CLL. Because the vast majority of patients will not be cured by CL – by their treatment for CLL. Meaning that the – even though the treatments we have usually work for a very long time in most patients, ultimately the CLL will at some point, perhaps years down the road, progress and need another therapy. For that reason, we know we can do better. And we are hoping that the next  clinical trial is going to lead to the discovery of a new agent or a new combination – new  combinations of agents that will allow patients to live longer with a better quality of life with CLL.  

Katherine Banwell:

Mm-hmm. 

Dr. Jean Koff:

So, that’s always a good option to consider.