Tag Archive for: fatigue

How Can You Thrive With an MPN? Advice for Navigating Care.

How Can You Thrive With an MPN? Advice for Navigating Care. from Patient Empowerment Network on Vimeo.

How can you thrive with an MPN? In this animated explainer video, an MPN specialist and myelofibrosis patient discuss how to make informed decisions about your care and live a full life with an MPN.

 

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Finding an MPN Treatment Approach That Is Right For You

How Can Patients Navigate Care and Thrive With an MPN?

How Can Patients Navigate Care and Thrive with an MPN?


Transcript:

Brian: 

Hi, I’m Brian. Nice to meet you! Many years ago, I was diagnosed with a condition called myelofibrosis. At first, it was a scary to learn that I had cancer, but once I found the right treatment option for me, I’ve been living a full life.  

Meet, Dr. Liu – my doctor. 

Dr. Liu: 

Hi! I’m Dr. Liu, and I’m a hematologist specializing in the care of people with myeloproliferative neoplasms or MPNs.   

MPNs are a group of blood cancers that are characterized by the bone marrow overproducing a certain type of cell. The three types of MPNs are essential thrombocythemia, or ET,  polycythemia vera or PV, and myelofibrosis, or MF. 

As Brian mentioned, with the right treatment, it is possible to live a full life and to thrive with an MPN. 

Brian: 

It’s so true. Navigating my care has been much easier because I partner with my healthcare team – participating in decisions makes me feel like an important member of the team. 

Dr. Liu: 

That’s right, Brian. When considering treatment, it’s important to weigh all of your options.  

While your healthcare team is the expert when it comes to the clinical side of your disease, you as the patient, are the expert on how treatment will impact YOU and your lifestyle.  

Brian: 

And as someone who knows my needs well, my wife is another key member of my team.  She comes with me to appointments and takes notes during visits, and when it is time to make decisions about my care, we both feel well-informed about the options. 

So, Dr. Liu – what factors should be considered when choosing an MPN treatment?  

Dr. Liu: 

Well, it’s important to note that everyone’s MPN is different so what may work for one person, may not work for another. In general, we consider certain factors,1 such as: 

  • The type of MPN, whether it is ET, PV, or MF. 
  • The patient’s age and overall health. 
  • Test results, including blood work or any genetic testing that has taken place. 
  • The symptom burden, which basically means how much the disease symptoms are interfering with a patient’s quality of life. 
  • Any pre-existing health issues. 
  • Finally, and most importantly, the patient’s preference.  

Brian: 

And I like to make informed decisions. So, when considering therapy, I also did some research on my own, and then discussed the information with my healthcare team. It helped my wife and me understand what we’d learned, and confirmed our decision. 

Dr. Liu, what sort of questions should patients ask their doctor when considering a treatment plan? 

Dr. Liu: 

Great question. When choosing therapy, patients should ask: 

  • How is the treatment administered, and how often will I need treatment? 
  • What are the potential side effects of the treatment? 
  • How will the effectiveness of the treatment be monitored? 
  • And, what are options if this treatment doesn’t work for me? 

Brian: 

That’s great advice. Once you’ve begun treatment, it’s important to continue to share how you are feeling with your healthcare team – be sure to mention any side effects or symptoms you may be having with your team. 

Dr. Liu: 

That’s right, Brian. If you speak up about what’s bothering you, we can usually find a way to manage the issue. 

It’s also important point to tell your doctor if you’ve missed a dose of your medication. Many of the newer MPN therapies are self-administered, and it’s important to let us know so we can adjust the plan if necessary. 

So, what steps should you take to thrive in your life with an MPN? 

Brian: 

  • First, understand and participate in treatment decisions. Be sure to share your personal preferences. 
  • Then, communicate regularly with your healthcare team – don’t wait to share information only when you have an appointment.  
  • And, utilize your whole team – nurses, nurse practitioners, and others, are all there to help you. 
  • Use your patient portal. You can view lab work and test results, or even use the messaging feature to communicate with your team. 
  • Bring a friend or loved one to appointments and always write down any questions or concerns in advance.  

Dr. Liu: 

And, most importantly, remember you are at the center of your care. Advocate for yourself! 

To learn more, visit powerfulpatients.org/MPN to access a library of tools. Thanks for joining us! 

Managing CLL Symptoms and Treatment Side Effects

Managing CLL Symptoms and Treatment Side Effects from Patient Empowerment Network on Vimeo.

Chronic lymphocytic leukemia (CLL) expert Dr. Seema Bhat reviews common CLL symptoms and treatment side effects and approaches for managing them. Dr. Bhat stresses the importance of sharing any issues they may be having with their healthcare teams.

Seema Bhat, MD is a hematologist at The Ohio State University Comprehensive Cancer Center – The James. Learn more about Dr. Bhat.

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Educational Resources for CLL Patients

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Transcript:

Katherine:

Can you please talk about common side effects of CLL – which, of course, we’ve covered already, but both the ones from the disease itself and then ones related to treatment, and what can be done about these? 

Dr. Bhat:

So, disease-related side effects, or we call them disease-related symptoms, include fatigue as a common symptom. Unintentional weight loss can happen. Fevers, chills, or drenching night sweats can happen. We call them, “B symptoms.” Spleen can enlarge, and the enlargement can cause belly pain or feeling of fullness quickly after a meal since spleen is close to our stomach, and as it enlarges, it limits the space stomach can take up in the belly. Lymph nodes can enlarge and can get uncomfortable. So, if any of these symptoms happen, then we have to treat the CLL, and once we start treating the CLL these symptoms should go away. 

As far as treatment-related side effects are concerned, for example, BTK inhibitors are associated with a certain set of side effects. For example, patients can have muscle cramping, muscle pain, joint pain. Patients can have diarrhea. Some of the side effects that we worry about is change in heart rhythm, for example, atrial fibrillation. We talked about that, or increased risk of bleeding.  

Those are some of the side effects we worry about, and if those were to develop, then, of course – for example, a patient has atrial fibrillation, and if it’s symptomatic, we hold the medication. We take care of the atrial fibrillation, usually in collaboration with cardiologists, and once that’s under control, then we have to decide what to do with the treatment. If the atrial fibrillation is under control, we can re-initiate the treatment, or we can go to one of the next-generation BTK inhibitors – the acalabrutinib (Calquence), the pirtobrutinib (LOXO-305), which have less of those side effects. 

Bleeding tends to be a concern, but anything that reduces the risk of bleeding like other medications, aspirin, clopidogrel (Plavix), other blood thinners, we can avoid them, monitor these patients very closely for any of these side effects, so that’s critical. With venetoclax, it’s usually very well-controlled. It’s the initial part of treatment that tends to be a little bit intensive because of the specific side effect called, “tumor lysis syndrome,” which means that the drug works very quickly, and cells die off quickly, they can release stuff in the blood, and things can collect in the blood. 

Uric acid can go up, electrolytes can be up, any number can go up. So, we are aware of this side effect, and we actually pre-emptively have things in place that can prevent this from happening, or if it happens, we manage it right away. For example, venetoclax has a specific dose initiation. For example, it’s called, “dose ramp-up.” We start it at a lower dose, 20 milligrams, for one week. Escalate it to 50 the next week, 100 the third week, 200 fourth week, and 400 the last week, which is the standard dose. They continue on 400 from there onward. 

And even with the slow dose escalation, in the early couple of weeks, we monitor them very closely. Once we initiate a dose, we bring them back to the clinic to recheck their blood work to see if there are any changes. If any changes have happened, we hydrate them, initiate medication for their tumor lysis syndrome. 

If the risk of tumor lysis is very high, then we monitor then admit them to the hospital. Otherwise, long-term side effects of venetoclax, what we have noticed mostly is gastritis, most side effects – mostly diarrhea. But that’s usually well-controlled. We can manage it well with supportive care. 

What Happens During CLL “Watch and Wait”?

What Happens During CLL “Watch and Wait”? from Patient Empowerment Network on Vimeo.

Many patients diagnosed with chronic lymphocytic leukemia (CLL) are put on “watch and wait” until it is time to treat their disease. Dr. Seema Bhat explains what it is and why sometimes this is the only approach patients need.

Dr. Seema Bhat is a hematologist at The Ohio State University Comprehensive Cancer Center – The James. Learn more about Dr. Bhat here.

See More from Thrive CLL

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Emerging CLL Treatment Approaches

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Transcript:

Katherine:

First, CLL patients are often put in “watch and wait” when they’re first diagnosed. What does that mean? 

Dr. Bhat:

So, “watch and wait” means observation. CLL is a slow-growing cancer, generally, and one of the few cancers that’s managed by observation if it’s not causing any problems to the patient. These problems could include symptoms in the form of fatigue, unintentional weight loss, symptomatic enlargement of their lymph nodes or spleen, or we could see changes in their blood work in the form of decreased hemoglobin or decreased platelets. 

If this is not happening, observation is still the standard of care. And data from this comes from a number of clinical trials where patients were treated based on just having the disease without having any of the symptoms or signs I just mentioned. 

All these studies had negative results, meaning that starting treatment at diagnosis did not affect the overall survival of these patients. These patients – these studies were, however, done in chemoimmunotherapy era. Now, we have targeted agents. And also, now we are able to define CLL better, which means that we are able to predict who has higher risk disease. 

So, there’s renewed interest in these – what these are called, early intervention studies. But until we have those results are matured and available, “watch and wait” is still the standard approach. And during “watch and wait,” we see patients at regular intervals, we assess them for symptoms, we look at their bloodwork, and one of the main reasons for seeing these patients at regular intervals is to reinforce what symptoms we want them to pay attention to. So, educating patients at each visit is a very important part of these visits. 

“Watch and wait” may be all that one-third of our patients may need through their lifetime. They may never need any CLL-directed treatment.  

How Are ET, PV and Myelofibrosis Monitored?

How Are ET, PV and Myelofibrosis Monitored? from Patient Empowerment Network on Vimeo.

MPN specialist and researcher Dr. Joseph Scandura reviews tools that are used to monitor patients with essential thrombocythemia (ET), polycythemia vera (PV), and myelofibrosis (MF), including routine blood work and symptom management

Dr. Joseph Scandura is an Associate Professor of Medicine and Scientific Director of the Silver MPN Center at Weill Cornell Medicine. Learn more about Dr. Scandura.

 

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Thriving With an MPN | Tips for Managing Worry and Anxiety

Thriving With an MPN | Tips for Managing Worry and Anxiety

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What Are Common MPN Symptoms?

How to Treat PV-Related Itching

How to Treat PV-Related Itching


Transcript:

Katherine Banwell:

I would imagine monitoring patients is different for each of the MPNs. So, how are patients typically monitored over time, and let’s start with essential thrombocythemia?  

Dr. Scandura:

Yeah. I think – again, it’s similar. You know, what’s near-term, what’s long-term? And so, in all of these diseases, thrombosis risk is a near-term risk. That’s something that I am monitoring in certain ways to help mitigate that risk. In ET and PV, I approach them similarly. Blood counts are certainly – these are diseases of the blood forming system. Certainly, monitoring blood counts I find helpful. But the reality of it is, in ET, there is not a clear linkage between blood counts and risks.  

And so, I like to keep the platelet count near normal if I can. But I also recognize that it may not be worth suppressing all of the blood counts to achieve that landmark, because it’s not clear that that’s really reducing the risk any more than just having somebody on a medication that helps control the blood counts. In polycythemia vera, different blood counts are very important. The red blood cells are kind of like part of the clotting risk. We know from clinical trials that keeping the red blood cell parameters within certain ranges reduces the risk of clotting. And so, what I monitor in polycythemia vera is the hematocrit. In women, I like to keep it below 42. In men, I like to keep it below 45.  

But I don’t just – I’m not a slave to the hematocrit. I am keeping an eye on the other blood counts and the other red blood cell parameters. So, for instance, what’s the size of the red blood cells? That tells me a little bit about what’s going on in the blood formation for that patient. And what’s the number of red blood cells? So, sometimes people can have very small red cells, because they’re a little iron-deficient and have a huge surplus of the number of red blood cells. And that tells me a little bit about how their blood forming system is responding to therapy.  

Iron deficiency in polycythemia vera is very prominent. I personally believe it’s a very major driver of symptoms in patients who are receiving phlebotomy as part of their care. And it’s something that I monitor and really counsel patients on. My goal is to make phlebotomy independent, but it can take a while.  

Everybody starts out iron-deficient, and then we take iron out of their body through blood with the phlebotomy. And that makes them more iron-deficient.  

Katherine:

Right. 

Dr. Scandura:

I monitor symptoms from patients, and sometimes that can tell me that their disease needs to be – their treatment needs to be tweaked a little bit, even something as simple as aspirin. People can sometimes have burning in the skin or itching that is sometimes responsive to changing the aspirin dose or how it’s given, once a day versus twice a day.  

And that simple thing can be a big change for a patient who’s kind of, literally, climbing out of their skin or wishing they could and to try and find something that is helping.   

I had a patient the other day. He had COVID. I said, “Oh, you should probably get this medication.” Do you have your primary care physician? Who’s taking care of you?” And he goes, “Well, to be honest with you, you’re my guy.” And so, it’s true. I see this patient a lot. And so, sometimes they forget. If I’m not paying attention to their blood pressure, the risks or treatment of diabetes, cholesterol, lipids, their screening programs for mammogram or colonoscopy, health maintenance issues, I do keep an eye on that in patients, because I do think it’s a part of the MPNs.  

I think that there are excess risks for patients for some of these factors. Certainly, if you think of it as three strikes, they get a strike for having an MPN. I don’t want them to have any other strikes. So, diabetes, hypertension, those are strikes that I can potentially, at least, treat or refer them to somebody to help comanage with me. And so, that’s kind of my general approach. 

Katherine:

What about patients who have myelofibrosis? Are they monitored more closely? 

Dr. Scandura:

Yeah, I think it depends a little bit on the patient. Patients with early myelofibrosis often don’t have any symptoms or near-term risks much different than those from ET or PV. As the disease can progress, then some of these patients have more profound problems with symptoms, which I may be trying to find a solution to make them feel better. And also, blood counts can become more of an issue.  

Transfusions in some patients who are very high white blood cell count, the spleen is often quite enlarged. Although, in my experience, most patients aren’t really bothered by the size of their spleen as the physicians are. But it is something where I think, on average, they’re monitored a little bit more closely to quite a bit more closely depending on the patient. 

Katherine:

What happens if someone suddenly has a change in blood counts? What do you do? 

Dr. Scandura:

Yeah. I mean, repeat it. That’s the first thing. Also, check what’s going on. It’s not uncommon in patients with MPNs that I’ll see them and the counts are a little bit out of whack, the white count is much higher than it’s been, and questioning them. “Oh, yeah. I had X, Y, or Z last week or the week before.” It used to be a upper respiratory tract infection, or they had a minor surgical procedure.  

And sometimes the responses to these things can be accentuated in patients with MPNs. And so, if that’s what of this story, I certainly would repeat it and let things calm down a little. And that’s often all it is. I’m much more of a monitor of the trends. So, one-time measure doesn’t generally excite me. It might make me want to have a follow-up a little more – in a shorter period of time. Of course, it depends on what the change is. But, for most of the changes that we observe, they’re relatively minor. And I will monitor them over time.  

If I see a trend where something is progressively increasing or decreasing over time, then I start thinking about what else is going on. And that’s always in the context of what’s going on with the patient. How are they feeling? What’s their physical exam like? What are the other laboratory values like?  

Katherine:

When is a bone marrow biopsy necessary? 

Dr. Scandura:

I would say a bone marrow biopsy is absolutely necessary at the time of diagnosis. I personally do not routinely monitor by bone marrow biopsy unless it’s part of a clinical trial.  

But I do perform a bone marrow or want to look at the bone marrow morphology if there is one of these changes or at least a trend that I want a little bit more information about. And so, if – or if it’s been a very long time since somebody has had a bone marrow. If it’s been five or ten years, then sometimes I may recommend we look just so we can collect a little bit more up-to-date information.  

But I don’t routinely do a bone marrow, but I will do it if there are laboratories that are kind of trending in the wrong direction, there’s symptoms, there’s physical findings that I’m just not sure about. And I think it would help me be more sure as to what’s going on and be able to discuss that with the patient. Sometimes, just to say, “Hey. Look, we were worried about this, but the bone marrow looks really good.”  

What Are Common Symptoms of DLBCL?

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?

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

See More From The Pro-Active DLBCL Patient Toolkit

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Understanding DLBCL Treatment Classes


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.  

Thriving With CLL | Tips and Support for Navigating Care

Thriving With CLL | Tips and Support for Navigating Care from Patient Empowerment Network on Vimeo.

What are the key elements that help patients thrive with chronic lymphocytic leukemia (CLL)? In this webinar, Dr. Seema Bhat discusses CLL treatment and research, explains how the side effects and symptoms of CLL are managed, and shares tools for managing daily life with CLL.

Seema Bhat, MD is a hematologist at The Ohio State University Comprehensive Cancer Center – The James. Learn more about Dr. Bhat.

See More from Thrive CLL

Related Resources:

 

Expert Advice for CLL Self-Advocacy

Expert Advice for CLL Self-Advocacy

CLL Treatment Approaches: What Are the Types?

Setting CLL Treatment Goals WITH Your Team

Transcript:

Katherine:

Hello, and welcome. I’m Katherine Banwell, your host for today’s program. Today’s webinar is part of our Thrive series, and we’re going to discuss tools for navigating life with CLL. Before we get into the discussion, please remember that this program is not a substitute for seeking medical advice. Please refer to your healthcare team about what might be best for you.  

Let’s meet our guest today. Joining us is Dr. Seema Bhat. Dr. Bhat, welcome. Would you please introduce yourself? 

Dr. Bhat:

Hi, Katherine. Thank you for having me here on the program. My name is Seema Bhat, and I am an associate professor at Ohio State University with expertise in treating CLL.  

Katherine:

Excellent, thank you so much for taking time out of your schedule to join us. 

Dr. Bhat:

You’re welcome. 

Katherine:

Like all of the webinars in our Thrive series, we start with this question. In your experience, what does it mean to thrive with CLL? 

Dr. Bhat:

So, thriving with CLL to me means that we envision our patients with CLL leading normal, functional, and productive lives. You know, when patients hear the word “cancer,” or “leukemia,” it comes as a big shock to them. Cancer is also associated with drastic changing – life-changing experiences. Patients think about their shortened life span, and the difficulties they’ll have to endure in this shortened life span due to the treatments they will be needing for their cancer. But I want to tell my patients that even though they have a leukemia, they have a cancer, they can still focus on their life in general. 

They have – this has been made possible by very effective yet gentle treatments approved for CLL. Patients can have an enjoyable, fulfilling life focusing on their life in general, and thrive. 

Katherine:

Thank you for that, Dr. Bhat. That’s important for patients to know. Let’s move on to treatment and walk through CLL treatment classes and types. Some of our audience members may already know this information, but it’s a good baseline for newly diagnosed patients. First, CLL patients are often put in “watch and wait” when they’re first diagnosed. What does that mean? 

Dr. Bhat:

So, “watch and wait” means observation. CLL is a slow-growing cancer, generally, and one of the few cancers that’s managed by observation if it’s not causing any problems to the patient. These problems could include symptoms in the form of fatigue, unintentional weight loss, symptomatic enlargement of their lymph nodes or spleen, or we could see changes in their blood work in the form of decreased hemoglobin or decreased platelets. 

If this is not happening, observation is still the standard of care. And data from this comes from a number of clinical trials where patients were treated based on just having the disease without having any of the symptoms or signs I just mentioned. 

All these studies had negative results, meaning that starting treatment at diagnosis did not affect the overall survival of these patients. These patients – these studies were, however, done in chemoimmunotherapy era. Now, we have targeted agents. And also, now we are able to define CLL better, which means that we are able to predict who has higher risk disease. 

So, there’s renewed interest in these – what these are called, early intervention studies. But until we have those results are matured and available, “watch and wait” is still the standard approach. And during “watch and wait,” we see patients at regular intervals, we assess them for symptoms, we look at their bloodwork, and one of the main reasons for seeing these patients at regular intervals is to reinforce what symptoms we want them to pay attention to. So, educating patients at each visit is a very important part of these visits. 

“Watch and wait” may be all that 1/3 of our patients may need through their lifetime. They may never need any CLL-directed treatment. 

Katherine:

Dr. Bhat, when it’s time to start therapy, what types of treatments are available for CLL patients? 

Dr. Bhat:

So, when we think about treatment for cancer, we think about chemotherapy – the conventional chemotherapy that’s associated with side effects like hair loss, nausea, or vomiting. I’m very happy to say that conventional chemotherapy is no longer the standard of care for patients with CLL. Patients who need treatment for CLL are nowadays treated with what are called, “targeted agents.” 

And we have, in general, two different classes of targeted agents that have been approved for treatment for CLL. We have the BTK inhibitors, Bruton’s tyrosine kinase inhibitors, of which we have three. We have ibrutinib (Imbruvica), we have acalabrutinib (Calquence), and we have zanubrutinib (BGB-3111). Then we have BCL-2 inhibitors, of which we currently have one approved, of which is called venetoclax (Venclexta). These treatments can be combined with monoclonal antibodies, which are directed towards the antigen called CD20. For example, rituximab (Rituxan) or obinutuzumab (Gazyva). 

Typically, venetoclax is combined with monoclonal antibody as a time-limited therapy. BTK inhibitors usually are not combined with monoclonal antibody. 

Katherine:

What about stem cell transplant, does that fit in there? 

Dr. Bhat:

So, stem cell transplant still has a role for treatment of patients with CLL, but it has moved down the line with such highly effective and well-tolerated oral agents available. 

But, for refractory patients – what we call dual-refractory patients, we definitely are, especially in high – patients who have higher risk features, we do refer them to stem cell transplant. 

Katherine:

And what is a dual-refractory patient, exactly? 

Dr. Bhat:

Dual-refractory patients mean patients who have had a BTK inhibitor, be it ibrutinib, acalabrutinib, or zanubrutinib, and the disease has progressed on that. And then we give them venetoclax, which is a BCL-2 inhibitor. So, these are the two classes of targeted agents that we have available. If they have received ibrutinib, acalabrutinib, or zanubrutinib, and after that, a venetoclax, or venetoclax followed by a BTK inhibitor, and the disease has progressed on both. These patients are called dual-refractory, and currently they tend to be very resistant to whatever treatments we have available. And we looked at other modalities of treatment, be it clinical trials or stem cell transplants for that. 

Katherine:

How are targeted therapies administered? 

Dr. Bhat:

So, most of the targeted therapies that we have, we are happy to say that these are oral agents. The BTK inhibitors, the three that we have available, are oral agents. Ibrutinib is taken once a day, zanubrutinib and acalabrutinib are twice a day. Venetoclax, similarly, is an oral agent and is taken once a day. Monoclonal antibodies are also considered targeted agents. These are given as infusions in the clinic or in the clinician’s office.  

Katherine:

The oral medications, patients take that at home? They don’t have to go into the hospital? 

Dr. Bhat:

They do not have to go into the hospital. However, venetoclax is associated with a specific side effect called, “tumor lysis syndrome,” where this medication works so well that initially the cells with die off quickly and then things can collect in the blood.  

For example, uric acid can go up, electrolytes can be up, any number can go up. So, we monitor what those initial weeks of starting venetoclax, we monitor patients very closely. We have them come back and forth to the clinic for monitoring, bloodwork, maybe hydration. And sometimes, if we think they’re at a very high risk for this tumor lysis syndrome, we admit them to the hospital.  

Dr. Bhat:

After we cross that, those are administered at home. They can take these at home. 

Katherine:

Dr. Bhat, where do clinical trials fit into treatment? 

Dr. Bhat:

So, clinical trials play a very important role to advance treatments. Clinical trials for CLL are done to test new treatments, new combinations of treatments, compare different treatments to each other. The goal of these clinical trials is to continue to do better than what we currently have available. This is how treatments improve. Despite all the advancements that we have had in CLL, in the recent years, it continues to be an incurable disease, even today. Our goal as researchers is never to stop until we get to that cure, and clinical trial is that pathway to that cure.  

Katherine:

Are there emerging therapies that are showing promise?  

Dr. Bhat:

Yes, of course. There are a number of emerging therapies that are showing promise. So, we all know about ibrutinib and other BTK inhibitors. These work very well, but sometimes the disease can get resistant to these medications, meaning that it stops responding to these treatments. We are excited about this new kind of BTK inhibitor called pirtobrutinib which has shown great promise in these resistance cases, and we are hopeful that it’ll be approved soon. 

Katherine:

Are there other options that patients have? 

Dr. Bhat:

So, we all hear about what is called, “chimeric antigen receptor T-cell therapy,” or CAR-T therapy. This is studied under clinical investigation for CLL and looks very promising. The therapy uses the person’s own immune cell called, “T cell” to identify and attack cancer cells. 

T cells are taken from the patient’s blood and sent to a specific lab. There, the cells are modified so that they can better find and attack cancer cells. These modified T cells are then re-injected back into the patient to find and fight that cancer, to eradicate the disease. So, this looks very promising. 

Katherine:

Many CLL community members are interested in learning more about their disease. So, for newly diagnosed patients, what are a few educational resources you recommend to help them learn more about their condition? 

Dr. Bhat:

There are a number of well-established support groups or educational resources for our patients. These include the CLL Society, The Leukemia & Lymphoma Society, Lymphoma Research Foundation, and then we have Patient Empowerment Network, and we have Patient Power. All these resources provide support groups, organize webinars, and have educational material for our patients. 

Katherine:

What about patients who have been living with CLL for many years, or are quite knowledgeable about their disease? Are there more advanced resources for patients to stay up to date on the latest research and treatment? 

Dr. Bhat:

So, for patients who want to search for additional resources, especially looking for clinical trials, going on this website called clinicaltrials.gov, they can first search for CLL-related clinical trials. Also, NCCN, or “National Comprehensive Cancer Network,” has patient resources for each disease, and then they can find information on CLL there, also. I would also like to say that Google is a good resource, as long as you know where it is taking you. 

Katherine:

Exactly. You may not be able to rely on everything you find. 

Dr. Bhat:

Right.  

Katherine:

Yeah. Many people with CLL will experience fear and anxiety, whether it’s the stress of being in “watch and wait” or worrying about regression. Why do you feel it’s important for patients to share how they’re feeling with their healthcare team? 

Dr. Bhat:

So, one of the important things to know about CLL is that CLL, at this point of time, it’s not a curable disease. It is a lifelong disease. Patients will have to deal with CLL for the rest of their life in some form or other, either on watchful waiting, or on active treatment, or if they’ll complete a treatment, they’ll have this lurking fear of relapse at any time. A large part of what I do is to help my patients understand what it means to live with CLL. And, of course, anxiety is a big part of that living with CLL. 

Although at this time, we’re unable to cure our patients with CLL, I want my patients to understand that it’s very treatable, treatments are very well-tolerated with low toxicity, and patients live a long life. They can have good, productive, and active life. They should ask their care team about resources for social, emotional, and physical support. 

They should let them know about their concerns, talk about their feelings. 

Katherine:

That’s my next question, actually. How can a social worker provide support and are there other healthcare team members who might be able to help? 

Dr. Bhat:

So, yes, patients are on a rollercoaster – emotional rollercoaster with this diagnosis. With this diagnosis come lots of unknowns. Worries about possible shortened life span, anxiety over treatment, and effects of treatment. So, there’s lots to deal with, and lot of uncertainty, which causes a feeling of hopelessness for these patients. So, psychological support is very important. That’s where the role of social worker comes in. 

We get them involved to help patients deal with the diagnosis, and social workers – they can provide patients with tools to cope with this life-changing event. They use life tools like encouraging positive thinking, mindfulness, being aware of what the patient can control involving faith and family, and also involving self-care. 

That’s where we see the role of the whole team as such. If patients are having more difficulties, we can have other members of a team, like a mental health provider, connect with our patients. Social workers and other members of the team can help our patients get connected to support groups, or even to other patients who have had similar experiences. 

Katherine:

What about worry and anxiety related to COVID and compromised immunity? What would you like patients to know? 

Dr. Bhat:

So, COVID has become another source of anxiety, unfortunately, for many of our patients, and rightly so. Our patients with CLL are considered immunocompromised, meaning that their immune systems do not work that well, which makes these patients very susceptible to different kinds of infections, COVID being one of them. And this was actually shown by some of the early COVID-related studies that showed a very high mortality in patients with CLL. 

This has improved now, mostly because now we are better equipped to handle COVID. We have COVID-directed medications available, but the major impact has been made by the vaccines. So, we highly encourage our patients to get vaccinated against COVID and keep up to date with the latest CDC guidelines. Also, we have Evusheld available, which is under emergency use authorization, and our patients with CLL, due to their weaker immune system, are eligible to get this, which adds an extra layer of protection for our patients. 

Also, it’s important to know that our test – if our patients test do test positive for COVID, they should let their team of doctors know immediately, since now we have monoclonal antibodies and pills that can be used to treat symptomatic COVID. 

Katherine:

That’s great information, thank you. Financial concerns can be another source of stress for people with CLL. Obviously, everyone’s situation is different, of course, but what resources are available for patients who need financial support?  

Dr. Bhat:

So, financial barriers can be a real concern for our patients. Targeted therapies are very expensive, and although insurances do cover them, the approved FDA drugs, copays can be very high, and this adds on because our patients with – our treatments with CLL, some of them tend to be indefinite. That means patients have to take those medications on an ongoing basis, and when they face such situations, high copays, we look into financial assistance. We look for funding for copay assistance, and funding can be provided by pharmaceutical companies. We can also apply for grants through The Leukemia & Lymphoma Society and other resources to help out our patients with these financial concerns. 

Katherine:

So, does the patient work with the healthcare team to find financial support? 

Dr. Bhat:

Absolutely. We at our institution have what is called, “MAP,” or Medication Assistance Program. 

And when we see that – we run the medications through the insurance, then we see the copay is high, we refer our patients to the MAP program, and then they take over. They find them grants, they find them assistance through be it pharmaceuticals, copay assistance programs. So, invariably, almost all patients who come and see us are helped through that program.  

Katherine:

What about a nurse navigator or patient navigator? What do they do? How can they help? 

Dr. Bhat:

Well, so yes. Nurse navigators and patient navigators are also very important for caring for our patients. So, patients can have, besides our care for our patients which includes caring for their disease, caring for their symptoms, caring for their reduced hemoglobin and reduced platelets, our symptom management, they have psychological needs, they have functional needs, they have needs like family support.  

So, these are all the things that patient navigators can help patients set that up based on their – we have patients who travel from out of state, are from two or three hours away. So, these patient navigators look into what resources they should have available locally. Sometimes, patient navigators help us – some patients cannot do frequent travels back and forth, so we get them connected to local oncologists, also. So, patient navigators look into those appointments, look into those offices, so they provide a lot of help to us manage our patients. So, they provide more of a holistic management, rather than just treatment of CLL. 

Katherine:

Let’s answer a few audience questions that we received in advance of the webinar. This one is from William. Can you please talk about common side effects of CLL – which, of course, we’ve covered already, but both the ones from the disease itself and then ones related to treatment, and what can be done about these? 

Dr. Bhat:

So, disease-related side effects, or we call them disease-related symptoms, include fatigue as a common symptom. Unintentional weight loss can happen. Fevers, chills, or drenching night sweats can happen. We call them, “B symptoms.” Spleen can enlarge, and the enlargement can cause belly pain or feeling of fullness quickly after a meal since spleen is close to our stomach, and as it enlarges, it limits the space stomach can take up in the belly. Lymph nodes can enlarge and can get uncomfortable. So, if any of these symptoms happen, then we have to treat the CLL, and once we start treating the CLL these symptoms should go away. 

As far as treatment-related side effects are concerned, for example, BTK inhibitors are associated with a certain set of side effects. For example, patients can have muscle cramping, muscle pain, joint pain. Patients can have diarrhea. Some of the side effects that we worry about is change in heart rhythm, for example, atrial fibrillation. We talked about that, or increased risk of bleeding.  

Those are some of the side effects we worry about, and if those were to develop, then, of course – for example, a patient has atrial fibrillation, and if it’s symptomatic, we hold the medication. We take care of the atrial fibrillation, usually in collaboration with cardiologists, and once that’s under control, then we have to decide what to do with the treatment. If the atrial fibrillation is under control, we can re-initiate the treatment, or we can go to one of the next-generation BTK inhibitors – the acalabrutinib, the pirtobrutinib, which have less of those side effects. 

Bleeding tends to be a concern, but anything that reduces the risk of bleeding like other medications, aspirin, clopidogrel (Plavix), other blood thinners, we can avoid them, monitor these patients very closely for any of these side effects, so that’s critical. With venetoclax, it’s usually very well-controlled. It’s the initial part of treatment that tends to be a little bit intensive because of the specific side effect called, “tumor lysis syndrome,” which means that the drug works very quickly, and cells die off quickly, they can release stuff in the blood, and things can collect in the blood. 

Uric acid can go up, electrolytes can be up, any number can go up. So, we are aware of this side effect, and we actually pre-emptively have things in place that can prevent this from happening, or if it happens, we manage it right away. For example, venetoclax has a specific dose initiation. For example, it’s called, “dose ramp-up.” We start it at a lower dose, 20 milligrams, for one week. Escalate it to 50 the next week, 100 the third week, 200 fourth week, and 400 the last week, which is the standard dose. They continue on 400 from there onward. 

And even with the slow dose escalation, in the early couple of weeks, we monitor them very closely. Once we initiate a dose, we bring them back to the clinic to recheck their blood work to see if there are any changes. If any changes have happened, we hydrate them, initiate medication for their tumor lysis syndrome. 

If the risk of tumor lysis is very high, then we monitor then admit them to the hospital. Otherwise, long-term side effects of venetoclax, what we have noticed mostly is gastritis, most side effects – mostly diarrhea. But that’s usually well-controlled. We can manage it well with supportive care. 

Katherine:

Here’s another question from Anna. She asks, “What is MRD, and does that mean that the disease is cured?” 

Dr. Bhat:

So, MRD is minimal residual disease, and in CLL is defined as the number of leukemic cells that can be detected in the blood or bone marrow following treatment, meaning how many cancer cells are remaining after treatment? This can be checked by a couple of tests. Most commonly, we use flow cytometry. Undetectable MRD is currently defined as the presence of less than one cell – one CLL cell in 10,000 white cells. 

It’s emerging as an endpoint in a number of clinical trials, and presence of no MRD, also called, “MRD-negative status,” although not considered a cure, predicts better outcomes with longer remission. This is being done in combination treatment, and although it’s part of clinical trials currently, with more data available, we may start using this in clinical practice in the next coming years. 

Katherine:

Sophia wants to know, “Are there any clinical trials regarding Richter’s, or DLBCL, transformation?” 

Dr. Bhat:

So, Richter’s transformation means when CLL, which is a low-grade disease, changes into high-grade lymphoma, and most commonly it’s “diffuse large B-cell lymphoma,” or DLBCL. Currently available treatments for Richter’s transformation are, unfortunately, sub-optimal. So, clinical trials to find better treatments are critical for this division, and there are a number of these currently going on. For example, some trials add targeted agents to the backbone of standard chemotherapy called, “R-CHOP.” 

So, we have one trial where acalabrutinib is being added. There’s another clinical trail where venetoclax is being combined with R-CHOP. One of the problems with Richter’s Transformation is that it tends to be refractory to treatment, and it tends to come back or relapse. So, there are studies ongoing for relapse treatment as well, with combination of targeted agents. And CAR-T therapy, we just talked about that, is also being studied in Richter’s Transformation. So, there’s a lot going on to improve the outcome for this. 

Katherine:

Okay, that’s great. Here’s one from Phil, “How do mutations affect longevity when surviving CLL? What new treatments help with P53 mutation?” 

Dr. Bhat:

So, there are certain prognostic markers for CLL, meaning certain tests that can tell us how a particular patient is expected to do. Some of these tests detect presence or absence of mutations in certain genes. For example, the IGHV gene can be mutated or unmutated. 

In patients with mutated IGHV, they do well, and patients with unmutated IGHV tend to have a more aggressive disease and may require treatment sooner. Similarly, TP53 mutations also tend to require treatment sooner, and more of these mutations do not respond well to conventional chemotherapy. However, targeted therapy has changed the outlook for these mutations, and it works very well for both these mutations. 

Katherine:

Finally, our last question. One audience member would like to know more about how CLL affects the immune system, including wound healing, and how does CLL impact this? 

Dr. Bhat:

So, patients with CLL usually have a weaker immune system. The lymphocyte, which is the white cell, which is affected in CLL, is an important part for an immune system, and due to the presence of disease, these lymphocytes – although there are lots of them in patients with CLL, they tend to be non-functional. 

“Functionally incompetent,” that’s what they’re called. And it leaves the patient’s immune deficient and susceptible to a variety of infections. Also, the lymphocyte is component – the B lymphocyte is one component of immune system. There are other components like T lymphocyte, antibody, MK cell. There’s cross-dock between the B cells and what we call, the “microenvironment,” which is made of the T cells. This cross-dock is deficient in patients with CLL, again making them immune-deficient and susceptible to infection. So, that’s one impact on their immune system. 

Sometimes, there’s something else happening in the immune system where the immune system can go crazy, or wacky, and start attacking the patient’s own blood cells leading to, for example, decrease of hemoglobin or platelets, because these are immune complications. And also, due to a weak immune system, patients with CLL can have delayed wound healing, which also predisposes them to infection. 

So, being aware of these complications is important and using appropriate precautions can be very helpful. Again, because they have a weakened immune system, vaccines are very important. Using all measures to avoid infection, hand washing, staying away from patients, from people who are obviously sick, is very important. Sometimes, patients where we see they’re’ getting frequent infections, we can use what’s called, “IVIG,” intravenous immunoglobulin. These are pre-farmed antibodies which are injected into or infused into the patient at regular intervals before the sixth week, which reduce the chance of these infections. 

Katherine:

Thank you, Dr. Bhat, for all the information. And please continue to send in your questions to question@powerfulpatients.org, and we’ll work to get them answered on future programs. Dr. Bhat, as we close out our conversation, I’d like to get your thoughts on where we stand with CLL progress. Can patients truly thrive with CLL? 

Dr. Bhat:

So, we have made strides in CLL treatment in the past 10 years that really changed the lives of our patients. These treatments work extremely well, and the side effects are gentler than what we used to see with conventional chemotherapy. And it’ll continue to get better with ongoing research, so I will tell our patients to focus on their lives. We know that they have this disease, but we know how to control it well. So, live your life. Enjoy. Be assured that we have all the tools available for you so that you can thrive. 

Katherine:

Yeah. It seems like there’s a lot of hope in the field. Thank you so much for joining us today, Dr. Bhat. It’s been a pleasure. 

Dr. Bhat:

Thank you so much for having me. 

Katherine:

And thank you to all of our partners. To learn more about CLL and to access tools to help you become a proactive patient, visit powerfulpatients.org. I’m Katherine Banwell. Thanks for joining us today. 

What Are Common MPN Symptoms?

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. 

Tools for Choosing the Right Prostate Cancer Treatment Approach

Tools for Choosing the Right Prostate Cancer Treatment Approach from Patient Empowerment Network on Vimeo.

Dr. Rana McKay discusses the factors that impact advanced prostate cancer treatment decisions. Dr. McKay reviews potential treatment side effects and explains how patients in treatment are monitored.

Dr. Rana McKay is a medical oncologist at UC San Diego Health and an associate professor in the Department of Medicine at the UC San Diego School of Medicine. Learn more about Dr. McKay, here.
 
 

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Transcript:

Katherine Banwell:

Since prostate cancer affects men differently, let’s review what factors could impact which treatment is right for their individual disease. How about we start with symptoms? 

Dr. Rana McKay:

So, yeah. I mean absolutely. I think symptoms are definitely something that plays into effect. Sometimes when patients are first diagnosed, they may not have symptoms. But, you know, boney pain, symptoms of urinary obstruction. You know, there’s specific treatments and strategies that we can deploy to help with those kinds of things. You know other factors that I think I – we take into account when we’re making decisions about which agent should any one patient receive is where are their sites of metastases? Is there disease just in the bones and lymph nodes or are there other organs involved? What’s the genomic make-up of the tumor? There are certain treatments that we would utilize if someone had a certain specific you know, genetic make-up for their tumor. You know, other things that are really important are what kind of drugs has the patient seen before or has that tumor been exposed to? Because that also helps us strategize for what to give them in the future.  

Katherine Banwell:

Do you take into consideration the patient’s comorbidities and their age and overall health? Things like that?  

Dr. Rana McKay:

Absolutely. Yeah. I think we need to absolute take that in account. I think – I think age is one thing. But I think functional status is just as – as important as the actual number itself because people are very different regarding the things that they can do at various age limits and so, that absolutely takes into account weighing the side effects of any given therapy and how that may interact with someone’s existing comorbidities and it may be something that we have to work with a team of other doctors to basically make sure that there is comprehensive, well-rounded care for any one patient.   

For example, some therapies may increase the risk of hyper-tension or increase the risk of volume overload. And so, if somebody has issues with that already we may have them see a cardiologist so we can make sure that, you know, we’re kind of addressing the totality of the patient experience. 

Katherine Banwell:

What do you mean by volume overload? 

Dr. Rana McKay:

Volume overload, I mean if they’ve got too much fluid on board. So, maybe if they have heart failure or something like that, and we have a therapy that’s going to cause them to retain fluid. And so then, we would have to work with a cardiologist to make sure that they don’t run into issues 

Katherine Banwell:

Mm-hmm. Once a man is undergoing treatment for advanced prostate cancer, how are they monitored to see if it’s actually working? 

Dr. Rana McKay:

So, a lot of ways. So, one is by just, you know, visiting with the patient. Making sure that their symptoms are in check. Making sure that they’re not developing new aches or pains that are worrisome. It’s by checking their labs in addition to their organ and bone marrow function. We would check their PSA. And PSA isn’t the whole story. But it is one factor that contributes to us determining whether treatment may or may not be working. It’s also doing intermittent scannings. So, you know, CT scans of the organs, of the lymph nodes. Bone scan and now we actually have PSMA based imaging, which can be integrated to help assess where the disease is and not yet being utilized to assess whether something is working, because we haven’t really defined the criteria there. But, it can be utilized as well.  

Managing the Side Effects of Advanced Prostate Cancer Treatment

Managing the Side Effects of Advanced Prostate Cancer Treatment from Patient Empowerment Network on Vimeo.

Prostate cancer expert Dr. Rana McKay reviews potential prostate cancer treatment side effects and discusses strategies for managing these issues.

Dr. Rana McKay is a medical oncologist at UC San Diego Health and an associate professor in the Department of Medicine at the UC San Diego School of Medicine. Learn more about Dr. McKay, here.
 
 

Related Resources:

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Transcript:

Katherine Banwell:

Dr. McKay, for these treatment classes, what can patients expect as far as side effects? 

Dr. Rana McKay:

Absolutely. So, I think side effects – discussing side effects is a really important part of the discussion for selecting any one given therapy and in general, I think when we talk about the hormonal therapies one of the side effects that people can get is largely fatigue.  

But a lot of the symptoms are related to low testosterone. And so, that may mean muscle loss, bone loss, you know, hot flashes, fatigue, decrease libido. So, you those are things to consider with hormonal therapies. With the chemotherapies, I think the big ones we worry about are fatigue, risk of infection, blood counts dropping a little bit, people getting tired, numbness and tingling in the hands and feet can occur, some swelling in the legs are common side effects for chemotherapy agents. With regards to the immunotherapy with the vaccine therapy, it actually tends to be a fairly well tolerated treatment. Maybe some fatigue, rarely some dizziness or some lip – lip sensitivity, numbness with the – the process of kind of collecting the cells. But it actually tends to be fairly well tolerated.  

The targeted therapies can cause fatigue. They can cause the blood counts to drop and can impact bone marrow function. There can be sometimes GI side effects. Nausea, rash, and then the immune therapy, the pembrolizumab (Keytruda), that is FDA-approved sometimes that can cause immune related adverse events which is kind of over activation of the immune system developing you know, what I’d call it as the itises. Colitis or pneumonitis which is inflammation of various organs and symptoms related to wherever that may be.  

What Is Advanced Prostate Cancer?

What Is Advanced Prostate Cancer? from Patient Empowerment Network on Vimeo.

When is prostate cancer considered advanced? What are the symptoms? Expert Dr. Rana McKay explains.

Dr. Rana McKay is a medical oncologist at UC San Diego Health and an associate professor in the Department of Medicine at the UC San Diego School of Medicine. Learn more about Dr. McKay, here.
 
 

Katherine Banwell:

What does it mean for prostate cancer to be considered advanced? 

Dr. Rana McKay:

So, generally what that means is that the cancer may have spread outside of the body – outside of prostate to other parts of the body such as the bone or the lymph nodes which is a common location where prostate cancer can go. Additionally, it may mean that the cancer may have come back after it was initially treated with an intent to cure a patient. But then you know the PSA demonstrates, that you know, there’s a rise in the PSA, and the cancer is recurrent.  

Katherine Banwell:

Right. That makes sense. What are the common symptoms of advanced prostate cancer?  

Dr. Rana McKay:

So, you know, I would probably say there common symptoms and just because somebody has these symptoms doesn’t mean they have prostate cancer. But fatigue, weight loss, urinary symptoms, trouble urinating, you know, benign prostatic atrophy is one of the most common symptoms or most common conditions in men and –  

Katherine Banwell:

What does that mean?  

Dr. Rana McKay:

So sort of benign enlargement of the prostate. You know that’s a common phenomenon that happens with age, and it can affect somebody’s ability to urinate. 

But, you know sometimes with prostate cancer it can also impact somebody’s ability to urinate. Their stream, their flow. They may have rectal discomfort. They may feel tired, boney pains. Usually, I tell patients you know persistent progressive symptoms that are just, you know, not going away, not getting better. Those need to be looked at by a physician to evaluate further. 

What Is Follicular Lymphoma? What Are the Symptoms?

What Is Follicular Lymphoma? What Are the Symptoms? from Patient Empowerment Network on Vimeo.

Lymphoma expert Dr. Matthew Matasar defines follicular lymphoma and provides an overview of common disease symptoms.

Dr. Matthew Matasar is a lymphoma expert at Memorial Sloan Kettering Cancer Center and Chief of Medical Oncology at Memorial Sloan Kettering Bergen. To learn more about Dr. Matasar, visit here.

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Transcript:

Katherine Banwell:

What is follicular lymphoma? 

Dr. Matasar:

Good question. So, follicular lymphoma, the first thing to say is that it’s a type of lymphoma. And lymphomas are cancers of lymphocytes, of immune cells. So, these illnesses are all cancers that come from and are of the immune system. There’s a tremendous variety of lymphomas, more than 100 different types, and these range from the slowest-growing to the fastest-growing things, and everything in between. But follicular lymphoma is one of the more common of these 100 plus diseases.  

It’s actually the second most common in America, and the most common of what we call the indolent, or naturally slow-growing, B-cell lymphomas. It’s called follicular lymphoma, because the stage of lymphocyte growing up at which we think the cells went wrong was when they normally live inside of these little nests, or follicles, inside of lymph nodes. People get confused. They’re like follicular, is that like hair follicles? It’s not that I have that many left. But no, it’s really about the lymph node follicles. And that’s sort of the stage at which we think that the cells went wrong.  

Katherine Banwell:

What are the symptoms of follicular lymphoma?  

Dr. Matasar:

So, it’s a very variable illness. Sometimes, this is a disease that presents with symptoms. People have swollen lymph nodes, swollen glands that they feel or that their doctors felt, or they have lymph nodes or other growths in the body that are causing pain or discomfort. More typically, however, this will be found accidentally doing testing for other purposes.  

You have a kidney stone, and your doctors do a CAT scan to look at the kidney stone. And they say, “Oh, what are those lymph nodes swollen about? What’s that about? We should probably figure out what’s going on there.” And then, there’s the third group which sort of present with what we all vague or constitutional symptoms, which is stuff like progressive fatigue, or maybe even fevers, or night sweats. But fatigue is a very common symptom that sometimes don’t even realize was there until sort of hindsight when they’re feeling better. And they’re like, “Wow, I didn’t know I could feel this good. I guess I’ve been tired for these last years. And I feel so much better. Thanks, doc.” 

What Are Common Side Effects of DLBCL Treatment?

What Are Common Side Effects of DLBCL Treatment? from Patient Empowerment Network on Vimeo.

Lymphoma expert Dr. Matthew Matasar reviews common side effects of diffuse large B-cell lymphoma (DLBCL) treatment.

Dr. Matthew Matasar is a lymphoma expert at Memorial Sloan Kettering Cancer Center and Chief of Medical Oncology at Memorial Sloan Kettering Bergen. To learn more about Dr. Matasar, visit here.

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Transcript:

Katherine Banwell:

What are common side effects of DLBCL treatment approaches? 

Dr. Matasar:

Like anything, the side effects are dependent upon the treatments that we use. So, treatments that use chemotherapy-based approaches will often have the side effects that we associate with chemotherapy. And obviously not all chemotherapies are created equally. But treatments like R-CHOP or R-CHP-pola, or Polarix regimen, these are treatments that use traditional cytotoxic chemotherapy agents and anthracycline based chemotherapy that have well-characterized side effects that are unfortunately unavoidable but often temporary things like hair loss.  

And hair loss is unavoidable with these treatments although temporary.   

The Oncovin or polatuzumab treatments can lead to a problem called neuropathy, which can manifest as numbness or tingling in the fingers or toes or constipation because our intestines have nerves too that are affected by these treatments. Certainly fatigue and lowering of the immune system are common with these and other chemotherapy medicines as well. And your doctors will always talk to you about ways to reduce the risk of infection such as vaccination and such as anti-infective medicines or immune boosting medicines to try to limit the risk of infection while receiving such treatments.  

What Are the Risks of CAR T-Cell Therapy?

What Are the Risks of CAR T-Cell Therapy?  from Patient Empowerment Network on Vimeo.

Dr. Melissa Alsina, a myeloma expert from Moffitt Cancer Center, reviews the potential side effects of CAR T-cell therapy for myeloma patients, and discusses how these side effects may be managed.

Dr. Melissa Alsina is an associate professor of medicine in the Blood and Marrow Transplant Program at Moffitt Cancer Center in Tampa, Florida where she also serves as head of the Multiple Myeloma Transplant Program. Learn more about Dr. Alsina, here.

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Transcript:

Katherine:

What are the risks of CAR T-cell therapy? 

Dr. Alsina:

So, in myeloma, it is, in general, pretty safe. There are two main – well, actually, I would say three main side effects that we can see with CAR-T. Number one is called cytokine release syndrome, and we are getting these cells from the patient’s immune systems, sending them a lab to be manufactured so that they can recognize this protein, BCMA, in the myeloma cells. 

And then, those cells are grown, so essentially, what we’re doing is that we’re taking the immune system of the patient, and we’re making it very specific against the myeloma cell. And then we’re growing it, so we’re making a hyperactive immune system, and then giving it back to the patient. And then, those cells, they are going to go ahead and react against the myeloma cells and start killing the myeloma cells, and in doing that, that reaction, that immune reaction will elicit release of a lot of proteins – cytokines – and that can cause side effects. 

When that happens, that is called cytokine release syndrome, and the most common finding with that is a fever. Patients can have a high fever. And then, it varies depending on the CAR-T that the patients are getting. So, for example, with this Abecma, usually, the reaction happens right away after you get the cells – the next day, so that’s why these patients, we admit them to the hospital because we know that this cytokine release syndrome is going to happen right away.  

And, it could be just a fever. In the majority of the patients, it happens like this, is just a fever, but it may be about 20 percent of the patients, that reaction can be more severe, and it could be a fever with low blood pressure or shortness of breath, and it could be a fatal complication, but that’s very, very rare.  

And we know – we can identify, obviously, when it’s happening, and there’s a medication that we can give to actually sort of counteract that reaction and don’t let it progress, and in the majority of the patients, that works quite well.  

Katherine:

What other side effects are there for CAR T-cell therapy? 

Dr. Alsina:

Yeah, so besides the main one that I discussed, cytokine release syndrome, the other thing that could happen is neurotoxicity, meaning that T cells can actually cross to the brain and cause toxicity in the brain, and depending on the type of CAR-T that the patient is getting, it could be less or more risk.  

But essentially, what could happen is that the patient could have some aphasia, like for example, difficulty finding words. It could also be just a headache. Patients could have seizures, so we do give the patients medication to prevent seizures while they are undergoing CAR-T. 

They can have difficulty writing, so we make every patient write a sentence every day to make sure that’s not being affected. And we do a mini mental status every day. Every day, we’ll go see the patient and ask them 10 different questions, like “Where are you? What day is it? Who’s the president?”, we show them an object, and so on so we can monitor these things very closely. If we see any changes, then we can intervene. Usually, for neurotoxicity, we give steroids. 

The good news, though, is that this is very rare. With Abecma, it’s very rare that a patient would have severe neurotoxicity. With ciltacabtagene autoleucel (Carvykti), which is the one that was approved more recently, from 100 patients that were treated, there were five patients that had this delayed neurotoxicity, some of them with movement disorders, like Parkinson’s-like systems, and these were delayed. These didn’t happen in the first few weeks. 

But we learned what are the risks associated with these, the majority of the patients that have very high tumor burden, so what we do is that we monitor the patients very closely, especially the patients with high tumor burden. The ideal situation is that we can control the disease a little bit better before taking them to CAR-T, but even when that’s not possible, what we do is that we intervene early on if we see that these patients are getting any side effects and being more aggressive with the intervention. 

And then, the third, more important side effect is these CAR-T cells can prevent blood counts to recover. For CAR-T, we give chemotherapy.  

That would allow the T cells to expand, and this chemotherapy can drop the blood counts, but usually, they recover quickly, but in some patients, this recovery doesn’t happen quickly, and patients can have low counts for months, and obviously, that would bring increased risk of infection. 

So, that is a potential complication, especially in patients that have received a lot of prior therapies, and it’s not common that a patient would take a long time, but it could happen, and sometimes, occasionally, we’ve had to give these patients a stem cell boost from stem cells that we have stored to actually make their counts recover. So, those are essentially the three most common complications, but in general, it’s a treatment that is well tolerated and very manageable, and I can tell you the majority of the patients that I’ve treated, they’ve said this is easier than a transplant.  

What Do You Need to Know About CLL Treatment Side Effects?

What Do You Need to Know About CLL Treatment Side Effects? from Patient Empowerment Network on Vimeo.

CLL Expert Dr. Jean Koff discusses common side effects of CLL treatment and explains how they can be managed.

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:

What are the common side effects of treatments, and how are they managed? 

Dr. Jean Koff:

So, each of the different classes of agents has a different profile of side effects. The BTK inhibitors, the first class that I mentioned with ibrutinib (Imbruvica) and acalabrutinib (Calquence), are usually very well tolerated. The most common side effects that we tend to see are things that the patients can feel or see, but also things that we can see on the labs when we’re monitoring patients. So, sometimes you can see a lower platelet counts or lower blood cell counts with ibrutinib. That’s something that you may not notice, but your doctor’s going to notice on the – the blood counts when you come to the office. Sometimes ibrutinib can cause a rash or GI upset, this is usually easily managed with supportive care from your physician.  

And then some more – some more common effects of the BTK inhibitors include joint pain and headache. And again, many physicians, because we’ve been using BTK inhibitors for a long time, have a good regimen for treating these side effects. More uncommon side effects of BTK inhibitors, particularly ibrutinib that we look out for would be abnormal heart rhythms and some tendency for bleeding. But these are relatively uncommon and with newer BTK inhibitors, we’re seeing lower rates of these side effects.  

Dr. Jean Koff:

So, in terms of venetoclax side effects we have a little bit of a different profile. This agent is much more likely to cause lower cell counts, especially in a white blood cell count known as neutrophil count, and so your doctor will be monitoring you for that. In terms of patient side effects that you can feel, it can cause a rash, it can cause some GI upset. These are usually relatively easily managed but we want you as the patient if you’re on venetoclax to talk to your doctor about these side effects so that they can help you feel better and help you manage those. In terms of the anti-CV20 monoclonal antibodies, which we use a couple in CLL more frequently, they have very similar side effect profiles.  

So, one is rituximab, and one is obinutuzumab. Obinutuzumab is usually used in combination with venetoclax in front-line CLL.  

Like I mentioned before, this is an infusion and most of the side effects that we think about and most commonly see in these anti-CV20s are side effects that patients have during the infusion. And these are referred to as infusion reaction. And these are relatively common, around 30 percent in these anti-CV20 monoclonal antibodies. So, what is an infusion center react – er sorry, what does an infusion reaction look like? This looks sort of like an allergic reaction. 

Katherine Banwell:

Hm. 

Dr. Jean Koff:

So, your nurses in the infusion center are going to be monitoring you very carefully once you start the infusion, and they’re going to start it at a low dose, very slowly. But the side effects they’re monitoring for, they’re looking for changes in your heart rate or blood pressure. You may start to feel hot or cold or sweaty, you may have chills. Sometimes patients can have swelling in their throat or their tongue. And what will happen is because these are fairly common, is we’re still able to give the anti-CV20, but what we do is the nurse will stop the infusion, they may give you some medications that calm down that infusion reaction. So, medications like antihistamines –  

Katherine Banwell:

Mm-hmm.  

Dr. Jean Koff:

Or steroids that help tamp down that immune response, and then they start the anti-CV20 infusion at a lower rate. The vast majority of patients will be able to receive an anti-CV20 antibody even if they have an infusion reaction. They may just need a little bit more of those immune tamping-down medications like antihistamines and steroids. And then the last thing to consider, which I think we’ve mentioned, especially in the venetoclax-containing regimens, is the tumor lysis syndrome. And so, that is a side effect like we mentioned is kind of like the venetoclax working really, really, really well, of the tumor breaking down too quickly.  

And so, patients who have tumor lysis, if they’re at high-risk, hopefully they’re already being monitored very closely with frequent lab draws, and they may receive medications that – that diminish the risk of adverse events happening because your electrolytes are out balance, for instance, your potassium is too high, or your calcium is too low. Because your doctors are monitoring you closely, they can give you medications that can help balance  out those – those electrolytes and help protect the kidneys. The tumor lysis is typically not a risk after the initial doses of venetoclax.  

So, the first couple weeks is when we typically monitor that, and then once the CLL has been broken down, or as I like to say, once it’s been cooled off a little bit, then you no longer have this risk of tumor lysis and it – it doesn’t require further monitoring. 

Katherine Banwell:

That’s great information, thank you.