Tag Archive for: CLL side effects

Can Digital Tools Enhance Side Effect Management in CLL?

Can Digital Tools Enhance Side Effect Management in CLL? from Patient Empowerment Network on Vimeo.

Experts Dr. Andres Chang from Emory University and Dr. Daniel Ermann from Huntsman Cancer Institute highlight the benefits of platforms like X (formerly Twitter) and LinkedIn for providers seeking up-to-date information, while advising caution for patients, recommending they rely on trusted resources and direct communication with their healthcare team to navigate potentially misleading online content.

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Innovative Strategies for Healthcare Provider Education on Side Effect Management in CLL

How Can CLL Patients and Providers Be Empowered for the Best Care?

How Can CLL Patients and Providers Be Empowered for the Best Care?

Transcript:

Dr. Nicole Rochester:

We know that social media is often leveraged in healthcare among providers. And I think you mentioned, Dr. Chang, an app. So are there any other digital tools or are there ways that either of you leverage social media in order to manage side effects, either with education to providers or to patients? And, Dr. Ermann, I’ll start with you on this one.

Dr. Daniel Ermann:

Sure. So social media is a tricky one, because not everyone uses it. Also in CLL in particular, our median patient age is around 70 years of age, and not too many of my 70-year-old patients are on, but they can be. So I think as a provider, there are a couple of things. I’ll be honest, Twitter is actually, can be a great resource. If you follow certain providers in the field, you’ll get some updated information before anyone else, including especially during our annual ASH meeting, there’s an ASH app. And if you could attend the meeting, you’ll see that most updated data. And you can see that on Twitter and/or X as well. Other than that, we also have a Huntsman app similar to Emory. But I think that that’s about as far as social media goes for me. What about you, Dr. Chang?

Dr. Andres Chang:

I agree with Dr. Ermann that places like X and LinkedIn, if you follow the right people, you can get very useful information. And I think that that’s particularly true for people within the academic community and healthcare providers. But for patients per se, I think that this could be a little bit more tricky. And so I try to steer them away from that, in fact, and I try to kind of keep them within the main resources. And if they have any questions or they have…or they’re confused about something, I always tell them, feel free to send me a message, and we’re happy to discuss whatever you read. And so I find that patients really appreciate the openness of discussing data because sometimes the data might be not very accurate. And by having that trust, they find it comfortable talking about things that might not be as conventional as we might think so.


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Innovative Strategies for Healthcare Provider Education on Side Effect Management in CLL

Innovative Strategies for Healthcare Provider Education on Side Effect Management in CLL from Patient Empowerment Network on Vimeo.

What are some strategies and approaches to CLL side effect management? Experts Dr. Andres Chang from Emory University and Dr. Daniel Ermann from Huntsman Cancer Institute discuss ways they provide information on CLL side effect management to other healthcare providers.

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The Role of Patient Education in Managing Treatment-Related Side Effects in CLL

The Role of Patient Education in Managing Treatment-Related Side Effects in CLL

Can Digital Tools Enhance Side Effect Management in CLL?

Can Digital Tools Enhance Side Effect Management in CLL?

How Can CLL Patients and Providers Be Empowered for the Best Care?

How Can CLL Patients and Providers Be Empowered for the Best Care?

Transcript:

Dr. Nicole Rochester:

Dr. Chang, I’m going to stay with you for a moment. Can you share any successful strategies for healthcare provider to healthcare provider education, any innovative approaches with regard to side effect management in CLL?

Dr. Andres Chang:

Yeah, I think that as important as educating patients, educating other healthcare providers is as critical. And as such, I think one of the missions that we have at academic institutions is that we should also offer some educational aspect to our consultant physicians across the community or nurse practitioners or nursing staff. And so one of the things that I commonly do is that my notes tend to have a couple of paragraphs that explain my rationale behind the recommendations with sources, primary sources of information if they want to look up any particular data where I’m basing my decision on. And that happens both in terms of picking this treatment versus this other treatment, what is the efficacy data, but also for side effect and adverse events data.

I also, as part of the Winship Cancer Institute, we have a big outreach program to our community. And I’m sure Dr. Ermann has [this] too over at Utah, where we have outreach programs and reach out to other community oncologists, trying to give them information about the newest and latest therapies. We do symposia. And we also have an app where community oncologists can actually look us up directly and give us a call or something that, in case they run into problems. And then we are happy to talk to them and help guide the management of their particular patients. I find that this kind of verbal communication and live direct provider-to-provider contact has been very useful. And I think that the community oncologists have really appreciated that.

Dr. Nicole Rochester:

I’m sure that they do. That is amazing. That’s awesome. What about you, Dr. Ermann? Do you have anything to add in terms of what you all are doing at your institution to communicate with other healthcare providers?

Dr. Daniel Ermann:

I just have to say Dr. Chang and I were on the same page. I completely agree with everything he said. I think that he is…it’s we’re super imposable at this point. I do the exact same things as he does, which is great, I think. I think that that’s fantastic. A couple other things I would just say as well is that I agree 100 percent. Communication is the biggest thing. Communication is not only one of the most important things, but it also can be a big barrier. So I think fostering communication between, a lot of what I do is deal with local oncologists as the academics. So I may only see patients a couple times a year, whereas the local oncologist may see them a couple times a month.

And so having an open line of communication, whether it be cell phone, like occasionally I’ll be texting local providers, calling them, having their phone number is very helpful, emailing back and forth. And then after I see patients, similar to Dr. Chang, I document well in my notes. And I also have my team send the note to them through fax or other means. So things like that, I think are very valuable and important and I think are game-changers when it comes to excellent patient care, because the communication barrier can sometimes be one of the biggest ones.


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Managing CLL Side Effects | Innovative Strategies and Approaches

Managing CLL Side Effects | Innovative Strategies and Approaches from Patient Empowerment Network on Vimeo.

What can chronic lymphocytic leukemia (CLL) HCPs consider for innovative ways to manage CLL side effects? Experts Dr. Jennifer Brown from Dana-Farber Cancer Institute and Dr. Callie Coombs from the University of California, Irvine discuss strategies for drug interactions, neutropenia, headaches, and other side effects.

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Transcript:

Dr. Nicole Rochester:

Along with therapies, of course, come potential side effects. Are there any strategies that you can share with our healthcare provider audience around innovative approaches or protocols that have been implemented to mitigate and manage the CLL side effects from the treatment?

Dr. Callie Coombs:

I think it comes down to your internal resources, but I would say taking care of CLL patients is clearly a team effort. And so it’s not just me, but also a team of additional practitioners that I work with. So I’d like to emphasize how important pharmacists are because I’ve definitely seen some side effects that come about because a patient is now on a medication that interacts with whatever their CLL therapy is, which drives up the levels of the drug and then brings out certain toxicities so they can help us identify these if, perhaps I missed it or didn’t ask the patient about a supplement, et cetera.

Next is nurse practitioners and oncology nurses. And so number one is it’s a team-based approach, and I think it’s certainly very important to have protocols internally. But also to just realize what the common toxicities are and how can we mitigate these.

One of the most common reasons that I’ve seen for patients stopping a drug prematurely actually is venetoclax (Venclexta). It very commonly causes neutropenia. And I’ve seen the drug given up on very early without any growth factor support, and so I think if you become educated and experienced with using drugs, you can realize there’s very clear strategies in improving patients with neutropenia, by supporting them with growth factor and getting them through whatever their defined plan course of venetoclax may be.

And then BTK inhibitors have a whole smattering of side effects as well where perhaps working with cardio oncologists can help in addition to other strategies depending on exactly what side effect the patient may encounter. So in summary, definitely a team-based effort and growing experience with the common side effects helps I think all comers with strategies to help prevent or mitigate such side effects.

Dr. Nicole Rochester:

Thank you so much, Dr. Coombs. Dr. Brown, do you have some additional best practices you’d like to share with regard to the management of treatment side effects?

Dr. Jennifer Brown:

Well, I agree completely with Dr. Coombs. I would just add that I think it helps a lot when you warn the patients ahead of time about things that may happen but that often go away or that you can manage. So, for example, headaches often happen early on when you initiate acalabrutinib (Calquence) but they go away typically very quickly. And so if patients know that, then they’re much less worried, and then you can talk to them about the strategies, because caffeine or acetaminophen (Tylenol) will often help with that. If you warn them that they may have some joint aches or pains, that can also help, since those are often transient.

With venetoclax, warning them about some nausea or diarrhea, and then we often manage that by subsequently moving the drug to the evening after they’re done with their ramp up, or initiating an antiemetic, things like this. And then oftentimes many patients who have that in the beginning, it doesn’t persist throughout the whole time that they’re on the drug. Sometimes the diarrhea may, but many times it doesn’t. So getting the patients through that early phase with the close management, which again, it helps, have your team help with that, the nurse practitioners, et cetera, and then hopefully things settle out and everyone’s happy.

Dr. Nicole Rochester:

Wonderful. I just want to emphasize two things. One that each of you said. One is this idea of a team-based approach, which is important in the treatment of all diseases, but of course very important in the treatment of the cancer. And also this idea of educating our patients so that they know ahead of time what to expect and really involving them as part of the team. So I really appreciate those, both of those points. 


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Is It Aging or My CLL?

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.

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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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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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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 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.  

Are There Any Long-Term Side Effect Risks for CLL Patients?

Are There Any Long-Term Side Effect Risks for CLL Patients? from Patient Empowerment Network on Vimeo.

Chronic lymphocytic leukemia (CLL) patients are at-risk for some treatment side effects. Watch as Dr. Nadia Khan from Fox Chase Cancer Center shares how side effects can vary by treatment type and some side effects for CLL patients to be aware of.

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Transcript:

Mary Leer: 

George asks, are there any long-term side effect risks for CLL patients? 

Dr. Nadia Khan: 

That’s a great question, George. It really would depend on the therapy being instituted and when in the chemoimmunotherapy era for CLL patients, we have a very different perspective of what short-term and long-term side effects were and are for those patients who have been treated with chemoimmunotherapy. For patients treated with targeted therapies and immunotherapy combinations today, there tends to be fewer serious long-term side effects when looking at the various drug classes. For example, BTK inhibitors, there is a risk of atrial fibrillation that remains constant throughout the course of therapy, and if a patient is on therapy for one year or 10 years, they can develop that particular side effect. High blood pressure can be significant with BTK inhibitors as well, and that risk also tends to be stable. In terms of infection risk, there is relative immunosuppression with all CLL therapeutics, and so our concern, more recently has been focused on COVID infection, serious bacterial and viral infections tend to be less frequent, we don’t institute prophylaxis for those infections because they tend to be so few and far between in the patients that we’ve treated.  

How to Approach Side Effects With CLL Medications

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Chronic lymphocytic leukemia (CLL) patients often experience treatment side effects. Watch as Dr. Nadia Khan from Fox Chase Cancer Center explains CLL medications that typically cause side effects and how the side effects can be managed.

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Transcript:

Mary Leer: 

We have a question from Larry about side effects. Larry says: I’ve been fighting side effects with each medicine. Will the correct answer for side effects in CLL always be to stop the medicine? 

Dr. Nadia Khan: 

Larry, thank you for your question. It is an excellent one, and this is something that we encounter on a very regular basis in CLL patients who are on targeted therapies. The side effects occur frequently in patients taking BTK inhibitors, in patients taking PIK inhibitors, and we have some side effects reported on BCLT inhibitors as well. Typically, side effects on all of these targeted therapies can be managed with either dose reduction or supportive therapies, and we don’t necessarily have to stop a medication due to a side effect that is encountered. And, of course, it would depend on the type of side effect and the severity of the side effect before deciding to pause therapy for a time or to dose reduce or add other medications to help. 

Mary Leer: 

Sarah has a question about side effects. How can I tell if side effects are from CLL, my medicine, or just a part of aging? 

Dr. Nadia Khan: 

Thanks for that question, Sarah. It can be a challenge to tease out the cause of any given complaint, whether the symptom is due to underlying other medical conditions, the medications a patient is on, their CLL therapy, their CLLl itself is something that we find to be challenging, and it can often be a process of elimination and understanding when side effects started and how they are related to the known side effect profile of a therapy is often a starting point. Depending on the side effect, we may decide to institute a treatment holiday, and if the side effect improves or resolves during the treatment holiday, it’s more clear that the side effect is due to the medication in question. If the side effect persists during that period of time, then it’s more likely to be due to something else.