Tag Archive for: platelets

How Can MPN Providers and Patients Guard Against Disease Progression?

How Can MPN Providers and Patients Guard Against Disease Progression? from Patient Empowerment Network on Vimeo.

How exactly can myeloproliferative neoplasm (MPN) providers and patients guard against disease progression? Expert Natasha Johnson explains the likelihood of disease progression and the importance of monitoring blood cell counts and symptoms for optimal care.

[ACT]IVATION TIP

“…monitor your blood cell counts, be your own advocate. Think about if they’re changing, could it be medication, or is it disease progression? Monitor your symptoms. Look at the total symptoms score or write down your symptoms and try to record where you’re at in intervals. Are things getting worse? If they are, don’t wait three months for your next appointment. Contact your healthcare provider and ask to be seen. Ask about getting a repeat bone marrow biopsy to establish where the current disease status is because that can open up doors possibly to more treatments.”

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Transcript:

Natasha Johnson:

There is a risk for progression for patients with MPN. When we look at this, we know that myeloproliferative neoplasms is really an umbrella term for three different diseases that run along a continuum. And they all are unique in that they have an overactive JAK-STAT pathway. And in that, they have very similar disease characteristics and driver mutations. So with that, progression is possible. It doesn’t mean that it’ll happen. It doesn’t matter what the percentage is. We don’t know that, we can’t say it definitely happens, but it’s something that we watch for. We educate you on those signs and symptoms of progression. So this could be caught early and be activated on early. So what are signs of progression? Progression can be thought as if you start to see changes in blood cell counts.

So this could mean a decrease in hemoglobin or platelets, or a rise or decrease in white blood cell counts. Now it’s very important to remember that sometimes changes in blood cell counts is really a side effect to medication, and that needs to be thought of before you think about disease progression. But it’s changes in these counts that don’t improve despite modifying the dose of medication. Another sign of disease progression is an increase or worsening in symptoms.

And here is where it’s important to know what the symptoms are and try to think about or keep a record in where you were and then where you are at today. When we think progression may be happening, it is important that your provider order a bone marrow biopsy, because that helps to reestablish current disease status, and it helps to guide treatment. Maybe it opens doors for more treatments.

My activation tip here would be, number one, monitor your blood cell counts, be your own advocate. Think about if they’re changing, could it be medication, or is it disease progression? Monitor your symptoms. Look at the total symptoms score or write down your symptoms and try to record where you’re at in intervals. Are things getting worse? If they are, don’t wait three months for your next appointment. Contact your healthcare provider and ask to be seen. Ask about getting a repeat bone marrow biopsy to establish where the current disease status is because that can open up doors possibly to more treatments. 


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Myeloproliferative Neoplasm Basics for Newly Diagnosed Patients

Myeloproliferative Neoplasm Basics for Newly Diagnosed Patients from Patient Empowerment Network on Vimeo.

What do newly diagnosed myeloproliferative neoplasm (MPN) patients need to know? Expert Dr. Idoroenyi Amanam from City of Hope shares how he explains the condition, possible MPN complications, and proactive questions to ask your doctor.

[ACT]IVATION TIP:

“…if you see high platelet counts on a routine blood check or high white blood cell counts or high red blood cell counts, you should ask your doctor to delve a little bit deeper to try to get an answer as to why your counts are presenting in that fashion.”

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Transcript:

Lisa Hatfield:

Dr. Amanam, how do you explain MPN to your newly diagnosed patients?

Dr. Indoroenyi Amanam:

Yes, MPN is a very rare disorder, and so most patients haven’t heard of MPNs in comparison to breast cancer or colon cancer, and so it’s…sometimes it appears very ambiguous as to what it actually is, and for patients, I generally tell them that there’s some…it’s a disorder that causes increased production of their red blood cells or their platelets, or the cells that help support the tissue in their bone marrow. And there’s some complications associated with that, namely blood clots, strokes, and heart attacks. And there’s also a small risk of these patients converting over into more aggressive blood cancers, namely acute leukemia. 

So my activation tip for this question is that, if you see high platelet counts on a routine blood check or high white blood cell counts or high red blood cell counts, you should ask your doctor to delve a little bit deeper to try to get an answer as to why your counts are presenting in that fashion. 


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What Tests Are Essential to Understand a Myeloma Diagnosis?

What Tests Are Essential to Understand a Myeloma Diagnosis? from Patient Empowerment Network on Vimeo.

Myeloma diagnoses can vary greatly, so it’s important to understand an individual’s disease before choosing a treatment approach. Dr. Francesca Cottini outlines the tests to better understand myeloma and explains the purpose of in-depth cytogenetic testing.
 
Dr. Francesca Cottini is Assistant Professor in the Division of Hematology at the Ohio State University Comprehensive Cancer Center. Learn more about Dr. Cottini.

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Transcript:

Katherine:

Part of accessing more personalized care starts with test results. Dr. Cottini, what testing should take place following a myeloma diagnosis?  

Dr. Cottini:

So, once somebody is diagnosed with multiple myeloma, there are different types of tests that we need to get. Some are blood tests, some are urine tests, some are bone marrow tests, and others are just different types of imaging. So, the reason for all these tests is because multiple myeloma can kind of go everywhere and can cause the damage to different types of organs. 

So, if we look at blood tests, usually you would see that you get the complete blood count, so we can count the number of red blood cells, white blood cells, and platelets. And then we’ll look at kidney function, through a chemistry profile, calcium levels, multiple myeloma can affect bone cells can affect kidneys. And then, you will see some more sophisticated tests that are really important for the diagnosis of multiple myeloma but also for monitoring and seeing if you’re actually responding to the treatment or you are progressing. 

These two tests that you can see are kind of difficult to say, but very important and needs to be remembered. So, one is called serum protein electrophoresis with immunofixation. And the other one is free light chain assays. 

And the practicum with these two tests is we can identify the specific marker of the multiple myeloma cells and it is either something monoclonal protein or M-protein or kappa light chain numbers. And as I said before, these numbers can be monitored. So, in response to the treatment, they should go down. And then, unfortunately, if we see progression, they might go up again.

And then, urine tests can also give the same type of numbers. Usually, we have our patient keep the urine for 24 hours, for a day, and we can see if there’s monoclonal proteins or light chains there, too. Then there is a least favorite test of all of them that is the bone marrow testing. So, this is very important for us, because it’s where most of the myeloma cells stay. So, we need to have a look at the bone marrow. 

We need like a piece of the bone and some of the liquid tissue to look at specific characteristics of the myeloma. And then, I said before, the myeloma can go to bones, so we need to kind of get some imaging of the bones. These are usually a set of X-rays – it’s called skeletal survey – to see if there is any area that is abnormal or at risk of fractures.  

Then, we are also looking at PET scan, which is a more sophisticated test that is based on sugar consumption. We know that myeloma cells and all cancers enjoy sugar, so with the PET scan, we can see visually where the myeloma cells are in the body.  

Katherine:

What is cytogenetics? 

Dr. Cottini:

So, this is a really interesting question. So, cytogenetics, or FISH tests, are tests that practical tests  allow us to look at the chromosomes of the multiple myeloma. 

So, everybody has 46 chromosomes, right? Multiple myeloma cells can have more of them or less of them. So, they can have – some myeloma cells have 17 chromosomes instead of 46. So, cytogenetics in the karyotype counts how many chromosomes there are. And then, there is another type of test that is called FISH test, or fluorescence in situ hybridization – I get all the difficult names – that practically look at specific area of chromosome. It can tell us if some areas of chromosomes are lost. That’s what you can read as deletions, or practically missing pieces of chromosomes. 

Or there are extra pieces of chromosomes. These are the amplification gains. Or if there are different pieces of chromosomes that stick together. And these are the translocational chromosomes. And all of these data are important for deciding for knowing how aggressive or difficult to treat the myeloma.  

Katherine:

Dr. Cottini, what mutations or abnormalities are you looking for? 

Dr. Cottini:

So, as Dr. Rosko said, and as I quickly previously mentioned, so there are different types of DNA tests that we can do. One is this FISH test, and that’s a standard test. It’s usually done practically everywhere. And it practically tells us if there are specific deletions or changes. 

And we don’t really have yet a specific medication that we know works for specific abnormalities. But all this information is important to decide, as Dr. Rosko said, number of drugs, and maybe that can be helpful in the future when hopefully thanks to the research, we will be able to say, “Based on this abnormality, you would benefit more from this type of treatment.”   

There are other types of tests. One is called DNA testing, so we look at the mutation. So, really to point to small changes of a particular gene. This is done not routinely, but I think it can still give lots of good information. And there are lots of genes that are normally myeloma, that has potential drugs that have been studied, those with multiple myeloma and any other type of cancer.  

How Is Personalized Medicine in MPN Care Influenced by Telemedicine?

How Is Personalized Medicine in MPN Care Influenced by Telemedicine? from Patient Empowerment Network on Vimeo

How is MPN personalized medicine impacted by telemedicine? Watch as expert Dr. Jeanne Palmer shares situations where personalized care can aid essential thrombocythemia, myelofibrosis, and polycythemia vera patients, how telemedicine can aid in care, and the value of specialized care.

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Transcript:

Dr. Palmer:

So I think one of the key…so when we look at treating different myeloproliferative neoplasms, you have to take what’s your goal of therapy. So for the ones like essential thrombocythemia, where you have too many platelets, or polycythemia vera, where there’s too many red cells. A lot of times what you’re doing there is you’re just saying, “Well, how can I predict whether you’re going to have a blood clot or something?” Because people can live, these can be fairly chronic diseases that with appropriate therapy, people can live a long time.

So a lot of that’s risk mitigation. Where I think a lot of the personalized aspect of it is coming in is probably in myelofibrosis, which is a disease where I view it as too much inflammation, scar tissue develops in the bone marrow, people could get a large spleen, high white blood cell count. A number of different manifestations. And in that, we’re learning more and more that in addition to the three driver mutations, the JAK2, the MPL, and the calreticulin, there’s probably a whole other group of mutations that can really be used to help us predict and try to take a look into the future to help guide them. And what is the timing for transplant? Should we be more aggressive as we’re getting more and more agents being evaluated and hopefully approved in the treatment of myeloproliferative diseases? Who are the people who should utilize these agents?

Because again, you don’t want to overtreat. And so I think that being able to hone in on these different mutations to be able to help us predict what we think will happen and maybe different treatment options that we would have, that’s going to be important. Now, one of the things that’s really exciting is that some of these companies that actually do this deep sequence, like looking at multiple, multiple genes, actually have mechanisms by which they will send somebody to a person’s house and then draw the blood and take it over and run it. And so I’ve actually had that done before, where somebody I saw via telemedicine, and we really wanted to get that information so I could appropriately advise on what I anticipated was going to happen in the course of the disease.

And we were able to actually get that information through using home care, saying, “I want this order to be done. The home care people went out, drew the blood, sent it to where it needed to go in the right format, and I was able to get that information.” So I think that telemedicine allows them access to people who understand how to interpret that information. But I think we have to give a lot of props to a lot of these companies that are really getting innovative in how they’re capturing the data, saying, no, you know what? You don’t need to have this done in Scottsdale, Arizona or Phoenix, Arizona. You can have this done in your own home and wherever your home happens to be.

So I think that that type of thing is really changing some of how we can utilize that data that’s very personalized, but be able to use it in a telemedicine format where we don’t need people to physically come here to get their blood taken. Now, I do want to add the caveat. There are a number of different institutions have enormous amounts of lab work that’s looking at things above and beyond the approved tests that have been validated and everything. And that would be a lot harder to get. There still are ways of doing that, but I think that we have to acknowledge that there is something that we do lose by doing that. Although I can get a lot of information, be able to provide a lot of input to a patient. It still doesn’t address the fact that by physically being there, sometimes you can get samples that you can biobank and you can send to somebody’s lab. And then these are the people who are discovering the new things that really that’s how we learned what we know so far. Is because somebody went and looked at these genes and more and more and more of this is going on. So I want to temper this with saying not everything can be done by a telemedicine.

That we have to be thoughtful about our approaches and really utilize combining in-person visits along with telemedicine to really do care. And to give an example, what I do for patients is if I follow them by a telemedicine only, I won’t actually be a prescribing doctor. I won’t be a primary provider. I have to at least see them once a year if I’m going to give medicines or do things like that. So I think that there’s a hybrid model that’s going to be really important to do as well for patients who are able to do that.

Lisa Hatfield:

Thanks for that.

Dr. Palmer:

If that makes…yeah.

Lisa Hatfield:

It does make sense. And I just had a quick question too. So if I’m coming in or I’m going to see my…I’m a newly diagnosed MPN patient going into my local oncologist. I’m watching this webinar and I hear, “Oh, if somebody came to my home. I could maybe do telemedicine, or I can have somebody come to my home and take my blood and look at these genetic mutations. My local oncologist doesn’t know exactly how to go about doing that.” Would that be the point where they might try to contact a specialist or go through the consult center through Mayo Clinic or somewhere to say, “Oh, I need a specialist to help me access this type of testing?”

Dr. Palmer:

So I have to be very honest. I just learned about this type of testing in the last year or so. And so it’s something that I’ve started to be able to utilize. With myeloproliferative diseases, I think, and very honestly, and there’s a number of us specialists around the country, I think everyone seeing one at least once in terms of just saying, hey, what’s our plan of care going to be? Are we looking at all the angles of it is a really important thing to do. And I think there’s a number of excellent physicians out there in different parts of the country that some of whom are using telemedicine, some I’m not sure that they are. But I think that getting that specialized opinion is extremely important. I think then in terms of managing care, there’s multiple… There’s multiple ways that can be configured that will help take care of the patient depending on their individual needs and their ability to travel and everything. 


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MPN Specialized Care and Technology: The Ongoing Role of Telemedicine

MPN Specialized Care and Technology: The Ongoing Role of Telemedicine from Patient Empowerment Network on Vimeo.

Why should MPN patients keep telemedicine in their toolbox post-COVID? How can patients and caregivers feel more confident in voicing concerns and communicating with their healthcare teams regarding telemedicine options? In this unique program, Drs. Jeanne Palmer and S. Joseph Sirintrapun discuss the impact of telemedicine on MPN care and technological tools accelerating the fight against cancer.

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Transcript:

Lisa Hatfield: 

Hello and welcome to this Patient Empowerment Network program. I’m your host, Lisa Hatfield. And in this unique program, we are going to explore cancer care and technology, specifically the importance of specialized care in myeloproliferative neoplasms and the ongoing role of telemedicine. And just to abbreviate myeloproliferative neoplasms going forward, I think we’ll just use the acronym MPNs, it’s a little bit easier to say. So today, I’m joined by two incredible experts. Dr. Jeanne Palmer is a respected hematologist oncologist, treating MPNs at Mayo Clinic. Dr. Palmer’s a Program Director for the Blood and Marrow Transplant Program. And, Dr. Palmer, it’s really a pleasure to connect with you today. Thanks for being here.

Dr. Palmer: 

Thank you for having me. I always enjoy coming to these presentations and being able to share some knowledge.

Lisa Hatfield:

Awesome, great. Well, thank you. We also have joining us, Dr. Joseph Sirintrapun, a noted clinical informatics expert from Memorial Sloan Kettering Cancer Center. And for some of our audience members, this term informatics may be unfamiliar or new to you. So briefly, informatics integrates the worlds of medicine and technology, and, Dr. Sirintrapun, it’s really nice to connect with you also. This is something that I’ve been wanting to learn more about anyway, the merging of medicine and technology. So it’ll be great to talk with you today. Thank you.

Dr. Sirintrapun:

Well, thank you for having me, I appreciate it.

Lisa Hatfield:

Thank you. We’re going to have a real-time look at telemedicine. I like to start with the current landscape and the ever-changing yet ongoing role of telemedicine. So starting with, Dr. Palmer, how does telemedicine work, and how does an MPN patient ask for or access telemedicine? How do you do that at your center?

Dr. Palmer:

So telemedicine has been a real…one of the blessings that’s come out of this whole COVID pandemic because it put fast-forward on the development of it and certainly has opened a lot of doors. I think one of the beneficial things of telemedicine is in a disease like MPNs, these are very rare diseases, and there are not a lot of specialists in the country. So depending on where you live, there may or may not be somebody who specializes in this disease focus. So by having telemedicine, you can have access to a provider who has a higher level of specialty in that specific disease. I think this is really important for any rare disease, just because of the difficulty in finding specialists. Many of them are in urban areas. And so if you live in a rural area or somewhere outside of that specific zone, it can be very difficult to come and see a specialist. Additionally, it can be very costly.

If you look at the cost of the airfare and the lodging and everything else, I think of people coming to Scottsdale can pay an enormous amount of money just to come for two nights and to be able to see me. So the fact that we can do this via telemedicine, they can get the information, receive the education about the disease and help for maybe their local provider and managing it can make a huge difference in the quality of care.

Lisa Hatfield:

Great. Well, thank you. So from a practical perspective and if you have a newly diagnosed MPN patient and they wanted to get specialized care or talk to an expert, would they just call…would they just look up online and find a phone number and try to call your clinic? Or how would they get access maybe as an expert opinion from you, via telemedicine?

Dr. Palmer:

So as of right now, the best way to access it is if you go on to the Mayo Clinic website, there’s actually a referral phone number where people can self-refer for a consultation. Now, the changing part of this, the changing part of this landscape is that right now we’re still in the public health emergency. So a lot of the barriers between seeing patients in different states based on…because I have a license in Arizona, I don’t have a license in another state. That’s going to become a bit more challenging because of the fact that if the physician…like, for example, myself, if there’s a patient who wants an opinion who lives in Nebraska, I don’t have a Nebraska license. So therefore it would be a lot more challenging, because I can’t actually do an initial consultation via telemedicine once the public health emergency ends.

I think this is a really important thing that needs to be worked on, probably on more of a legislative level of trying to change some of the rules and laws associated with this. And something that I know there’s a number of people working on, but as of right now, and I think…I don’t remember when the public health emergency will be ending, but during the public health emergency, it’s just been a matter of just calling in like you’d normally try to get a consult. However, that will change and hopefully, as more awareness of telemedicine and some of its benefits are really understood that some of these laws can change and some of these processes can change so that they can allow people to get access to care they otherwise wouldn’t be able to receive.

Lisa Hatfield:

Yes, I appreciate that, and I will be a fierce advocate out there trying to have those telemedicine benefits continue, because I do come from a more rural state, so I appreciate those.

Dr. Sirintrapun:

Can I jump in?

Lisa Hatfield:

Yes, please do. Yeah.

Dr. Sirintrapun:

To help answer some of the points that Jeanne had brought up. The American Telemedicine Association works very hard in terms of looking at the same problem about the state laws, being able to be licensed and have ways to overcome state barriers, and then another one about the public health emergency…and it is true, I’ve been hearing that it’s going to end some time in a couple of months, so that’s one thing to keep in mind as well, and they’re going to have to look in terms of what to do afterwards. Because there’s a lot of things that patients enjoy, providers enjoy that they’ll have to continue that technically go away, but we don’t necessarily want to see that go and so these are the things that we’ll have to keep in mind moving forward after the public health emergency ends.

Lisa Hatfield:

I appreciate that, and I think you’re right, and I think that telemedicine has had… It can have a detrimental impact on outcomes for patients too, and to remove that would be devastating for some patients like myself. All right, so Dr. Palmer, the COVID pandemic has resulted in significant changes to many aspects of daily living for all of us, but for patients like myself who are living with cancer, there are different realities that we have to deal with, so can you give a brief overview of the impact that COVID-19 has had on MPNs.

Dr. Palmer:

So I think the impact of COVID-19, I think we just spoke about some of the favorable things that telemedicine became a real reality, some of the detrimental things, enrolling in clinical trials has been very, very difficult because of the fact that, number one, the public health emergency, some patients weren’t able to travel. And then number two is, I think there has been sort of an exodus of people working in healthcare, I think healthcare has become extremely stressful because of all the pressures associated with the COVID pandemic. So having the appropriate staffing for clinical trials has been difficult, but one of the things that I think is coming out of this that I think will be really positive is there are a number of studies that are being looked at now that are actually creating ability to have some of the visits done by a telemedicine. So taking what’s not as critical to be seen in-person, and what labs we don’t need to necessarily get that need to go to a central processing area, but there are actually ways that we are working with home health care companies with different labs to be able to provide some of this ability to do telemedicine, especially on the clinical trials where there’s monthly visits.

I have had patients travel from multiple different areas of the country to be on clinical trials. I’m usually more in the Southwest or at least the West Coast, but I think that with some of these changes, it’s going to be a lot more of a reality for it. So I think some of the pressures of the COVID pandemic will…again, there will be sort of a silver lining of it, and that we may have this ability to do that, because even if I looked at…you look at the pre-COVID clinical trials, if there was a trial that needed monthly visits, which a great number of them do. I would say the majority of my studies that I have for patients with MPNs require monthly visits, at least the first six months. Being able to have that extended out is hugely important and will allow access for it, so if we can have a virtual visit, even every other visit, that can make a big difference in somebody’s ability to access new treatments.

Lisa Hatfield:

All right. Well, thank you again, the push for continued telemedicine benefits would be great. So another question for Dr. Palmer, is technology playing a role in accelerating progress in MPN care, not just the technology of telemedicine, but other technologies? And what role does technology play in symptom management and in clinical trials? You mentioned that you can maybe do telemedicine every other month, but what other roles does technology play?

Dr. Palmer:

So that’s a great question. I actually have been fortunate enough to work with an informaticist who will be joining our faculty this summer, and what we are trying to do is be able to utilize our electronic medical record and some of the forms and texts that you can use within it to be able to capture data and be able to understand it. From the standpoint of even my day-to-day practice, one of the things that’s very important in myeloproliferative diseases is capturing the symptoms score. And this is a way of measuring some of the symptoms that can be very bothersome and troublesome to patients with myeloproliferative diseases and has been validated and utilized throughout multiple studies and multiple settings. So I’m actually in the process of getting that built into our EMR here, so that before patients even come and see me, they can fill out that form of questions. And I think that the sky is the limit. There’s so many patient-reported outcomes and so many things that are going to be important to capture as we move forward. And a lot of times you can ask somebody, “How do you feel?” And they say, “Oh, I feel great.”

Because what else are they supposed to say? Social norm is to say everything’s fine, and then you start to ask them specific things like, “Are you having itching? Are you having fatigue?” And all of a sudden it comes out that they’re really not feeling that well. So this will be really important, and if you can have people do that beforehand, and I think that we can gain a lot of information that can really help utilize the small amount of time we have to focus it on the areas that need to be focused upon.

Lisa Hatfield:

That’s great to hear. Yeah.

Dr. Palmer:

Yeah, the other thing that I didn’t mention is that I think being able to do research. It will be very helpful if we can capture all the data about patients in a way that can be outsourced to a database and then analyzed versus having to hire people to extract information directly from the chart, which is a very laborious process and often not very accurate. So that’s one of the things that we’re working on here is to say,” How do I not only create this template for capturing information from the patient, but how do I make my clinical notes into something that can be harnessed for a database that can then be queried for different questions to try to understand the disease better?”

Lisa Hatfield:

Well, and that is a great segue into what we’re going to talk about with Dr. Sirintrapun. So, Dr. Sirintrapun, as far as informatics goes, can you give us the lay person or a patient-friendly version of what informatics is and what it means for cancer care?

Dr. Sirintrapun:

I really appreciate Dr. Palmer giving the segue for the informatic system. So this is…let me start with maybe when I explain to colleagues and other people about what informatics is. When you think of informatics, you think of three pillars, and we always..I almost have it down like a parrot. So it’s people, processes, and technology. And people always think it’s the technology, but it’s also people and processes, and that’s always been…whenever you see informatics, that’s the three pillars, but I wanted to add one more that Dr. Palmer also mentioned is data and information. You incorporate all those, so imagine all the four pillars coming together to enable the practice of medicine care and at a very high level, what I like to think of informatics is, it’s the science of bridging the gap, decreasing the chasm between the right caregiver to the patient who needs it. Because there are chasms everywhere, in terms of logistics, space, physicality, you have to travel five states to get help with a rare tumor.

Those are chasms there. And I see informatics as bringing all those different pillars together. How do we do it so that the chasm is decreased? Or if it’s not a chasm, decreasing the friction, decreasing the burden between making these things work, making things more efficient. So I think I was hearing a little bit earlier about how can we automate things? As Dr. Palmer mentioned before, data, data abstraction data, being able to pull data from these gigantic enormous resources, it’s tough. And it’s not like we can hire the entire high school student population on their summer internship to go and read through these notes. And there’s not enough money, there’s not enough knowledge. And we need to find different ways that we can use automation, AI, or other things like that to do it.

And this is where informatics kind of delves in. How do we apply all these different things so that people can use it, because you never can forget about people. It works in the processes that take place and it’s the right technology. Because sometimes technology, it’s a great technology, but it’s not ready for certain things. I see a lot of technology kind of ahead of its time. It’s basically a tool in search of a problem and people try to stick it somewhere where it doesn’t fit. So it’s a lot of that. And as you can tell, I’m pretty excited about it because that in a nutshell gives you a feel of what informatics is all about, so.

Lisa Hatfield:

Great. Well, thank you for that. So pre-pandemic…we were talking a bit with Dr. Palmer about telemedicine. Pre-pandemic, you and your colleagues explore the role of telemedicine in cancer care. Can you give a brief overview from your perspective, how telemedicine has evolved and continues to evolve and how you think it might evolve going forward? I guess that’s what evolve means, but. [laughter]

Dr. Sirintrapun:

Yeah, I think I like pulling out these old sayings and I think Winston Churchill was credited with it even though I don’t think he said it, but never let a good crisis go to waste. You probably heard that during COVID, and COVID really blew open the door for telemedicine. I think because we just had to, there was no choice behind that. And thankfully, people…organizations, people recognized it. And I remember in March, March 2020, the public health emergency was declared and a lot of different things that were barriers and a lot of them were regulatory. They were opened up so that it can enable reimbursements, all these different things that factor in. And being able to leverage the technologies, because keep in mind with providers, I knew providers that didn’t know how to use Zoom and other technologies. And because of COVID, they were forced and they found out, “Hey, it’s not that bad.” But if I were to do that before the pandemic, they’d be like, “Well, why should I? We’ll just show up in this conference room. We’ll just be there at six o’clock in the morning.”

So it opens people’s minds. And I think that really helped. I don’t think that Genie’s going back into the bottle, not at least completely. I think we’re going to figure different ways to leverage those technologies moving forward. So in terms of telemedicine moving forward, some of the things I’d like to see and hence I think this is maybe one of the reasons why I’m here, is like how do we enable clinical trials to embrace the telemedicine model? Because clinical trials till now historically has been kind of a physical model. You have to go to some ivory tower, some centralized place and that really limits down, the patients can do it. There’s access problems. Even if you had the richest study in the world, you had to fly people from all over the world. You can imagine that just drains the budget. There are just all these different things there. And when you think of the way clinical trials are conducted, it didn’t really take into account telemedicine visits.

At my institution Memorial Sloan Kettering, we developed an entire ecosystem of telemedicine tools to actually try to encompass the patient experience as close as we could. Because the experience, it can never be completely duplicated, but you can do certain things definitely through telemedicine. We tried to do our best to do it so it’s easier for patients, the nurse coordinators as well as the providers to use that. And clinical trials, they’re moving towards it. They’re acknowledging the issue and they’re rethinking the ways to do it. How can we enable it so that we can decrease the chasm between the patient and being able to enroll in a clinical trial? So in a nutshell, that’s the way things are going. We’re not there yet, but we’re definitely thinking about it. It’s definitely a discussion. I think the future will see a much more clinically- and a telemedicine-enabled clinical trial framework.

Lisa Hatfield:

That’s great to hear. For patients, I think that’s really, really encouraging to hear that we’re utilizing that technology. So in addition to the telemedicine technology, there are other types of technology that are influencing cancer care. Can you speak to some of those technologies? I know I’ve always been really interested in the CRISPR technology, which I don’t hear about as much anymore. Artificial intelligence, my oldest daughter is graduating from college this year. That’s what she’s studying. So can you touch on some of those technologies and how those are continuing to evolve also?

Dr. Sirintrapun:

Oh yeah, there’s a lot. So maybe as a disclaimer also, in addition to being an informaticist, I’m a pathologist. So it’s a great honor to speak in front of patients, because many patients may not necessarily know whenever you get a diagnosis, there’s a pathologist who made the diagnosis on a glass slide through a lab test. So that’s my path as a pathologist. So a lot of my technology mindset is in terms of diagnostic. So how do you make the diagnosis better? And you mentioned about…well, I mean, we’ll start with CRISPR. CRISPR is not necessarily in the diagnostic front, but it’s a very exciting thing, especially for those tumors that have genetics. One of the simple genetics. You misplace one gene here, and all of a sudden it just alters the way one protein goes, and it leads to a disease, a cancer. And if you’re able to surgically or genetically microsurgery, you can imagine the implications and the transformation for that.

We’re already looking at it with hereditary diseases like Huntington’s and some of the different blood disorders out there, which have like single genes or maybe a couple that you can just sort of pick out there. It’s still early. And that’s maybe the reason why you haven’t heard the technologies there that can do it. But how to deliver it, how to do the microsurgery. You can have the scalpel, but somebody has to hold the scalpel and how to do that in terms of what type of nanotechnology is out there, all these different things. But CRISPR is very exciting. I do expect over the next, definitely in the next couple of decades, you’ll see something, some brilliant application coming out of that.

Now you mentioned AI, that’s definitely down my wheelhouse because I implement a lot of…I see a lot of AI, and I try to figure out different ways to implement the AI into healthcare. Because there’s tons of AI out there, but the idea is to basically use the right AI at the right time with the right person using it and for the right problem. And there’s a lot of rights in there, and it sounds simple. But you have to keep in mind that in the AI world, we sort of separate AI into like general AI and narrow AI. General AI is kind of the, is what some people term the singularity. Like it knows everything. It can read your mind. You can switch the setting of whatever it is. It can write poetry in one setting, play the piano in another. There really is no such thing.

So if you hear ChatGPT, if you ask it to play the piano, it’s not quite applied for that. It’s really for language. And I try to illustrate that point because that…all these AI currently that’s out there is still in a narrow AI. It doesn’t do what a person does. As people, we can switch. We can task switch. We may not beat the robot, but we can certainly task, if the setting changes, we can adjust. And that’s the power with our intelligence. We’re generalized. While most AI is narrow, but very good. They can be…obviously, when IBM Watson beat everybody at Jeopardy, and now you hear ChatGPT beat people in passing the boards. So a lot of med students are going, oh my gosh. Keep in mind that it’s narrow. I mean, this is what the robot is really good at. They’re very good at facts. They’re good at other things. And you can use that. You can, but they’re not going to be able to task switch.

And they’re not going to be able to know when they need to deploy the right situation. Remember, they’re narrow. So they’re not going to know when you change a situation. It’s not going to know when to switch. That’s the job of a physician, maybe the patient. And it’s my job as kind of the engineer or an informaticist to figure out when those come in. When should it trigger at the right time? When to make sure that people don’t misuse it at the wrong time and deploy the right problem to the right AI. And so, for instance, as a pathologist, one of the big hottest things that we have right now is prostate biopsy. I deal with male cancer. So I deal a lot with prostate. But the AI is pretty good at actually even, I would argue, probably getting better at catching cancer in a small prostate biopsy than humans are. There are small things that maybe, for whatever reason, human factors being tired, the AI can actually catch it quicker.

It might overflag. It might catch things that are not necessarily cancer. But it will catch it. It will catch it. And it can be very helpful. Because you can imagine as humans tire, they can use that to screen. It may not be perfect at diagnosing, but it can screen. And at least it won’t miss anything. And then the human, the pathologist who comes in, can go and say, I can confirm that that’s cancer or not. So you save a lot of mental power, mental energy in terms of things. And this is an application of AI helping providers, and I can see in the future even patients sort of answer questions that would have been very laborious, tedious. This goes back to the automation theme that we had earlier. How do we make things easier? How do we decrease the friction? I sort of illustrated a case where they had friction points and tiredness and things like that. And so these are things that are on the horizon.

And I think we’ll learn a lot in the next decade or so. You’ll see a lot pop up. You’ll probably see some mistakes too, people overusing it or being in the wrong situation. But that’s the way medicine works. Medicine works through some trial and error. You make your best guess. You have experts. But in the end, there’s a lot of unforeseen things. But you learn a lot along the way. And you learn when to use it. And eventually, you reach this equally important point where everything works very well. It’s part of the workflow. It’s just part of…you just expect it. It’s just when you go to care, you just expect that there is a human overseeing some AI that’s making sure that you’ve got the right diagnosis that nothing’s left out, nothing’s omitted, and you can trust it. That’s kind of the place you eventually end up being.

Lisa Hatfield:

Well, and you hit right on something that I think a lot of people worry about is how can we trust AI and all of the ethics surrounding that? Can we really trust AI? As a patient, I’m fascinated by that. And I know that the Cancer Moonshot Program has directed some funds to AI and cancer research. I look forward to the day when there’s a bridging of that gap between research and then clinical practice with humans involved in a lot of the decision-making along the way also. I’m not sure that we can ever move away from that. But that was a great overview of technology. I hope it continues to evolve. I hope what I’ve seen, what you talked about, you work more in solid tumors. I have a hematologic cancer myself. But I do see that there is some AI being used in earlier screening and also in the identifying of different genetic mutations within those cancers. So I look forward to that continuing to evolve.

Dr. Sirintrapun:

That reminds me, too, and I left that part out. Some of these technologies…I’m sorry I left that out, but genomics has become a big thing over the last decade because of the Cancer Genome Atlas and other things that actually allowed us to map the genome. But along that front, we have technologies that can monitor progression. So we can at the cellular level. If you’re actually circulating cell-free DNA as a technology that’s out there. Where if you can implement it correctly, you can actually follow the patients just through blood without anything invasive. And it’s much better than any imaging study out there. So there are technologies that are evolving on this. And because of all the progress we’ve made over the last 10 years, you can see that being incorporated in a clinical trial where you can monitor patients much better. You can intervene faster and more effectively and all those other things like that. And thanks for reminding me about that. I forgot to mention cell-free DNA is another one that I’m very excited about, still early.

Lisa Hatfield:

Yeah. Well, thanks for that information. Dr. Palmer, do you have anything to add to this informatics description or discussion?

Dr. Palmer:

Well, I think there’s a couple of things about the technology component of it. I know it was several years back, CRISPR, when it first came about. It’s a brilliant technology. Everyone got very excited. Okay, if you look at a lot of the myeloproliferative neoplasms, there are three driver mutations that are really felt to contribute strongly to the development and the ongoing nature of the disease. Everyone said, “Oh, I can go in and if you take out that gene and replace it with the new one, I can fix it.” I think that where the role of CRISPR right now is, is it’s doing amazing things to help us understand the biology of the disease.

I think in terms of treating a lot of the malignancies, they’re so genetically complex that even though we say, okay, well, you have, for example, a JAK2-positive essential thrombocythemia, which is JAK2 is one of the driver mutations and essential thrombocythemia is too many platelets. Unfortunately, I probably can’t go in there and get all the JAK2 mutations in the blood system to replace them. Now, where it is making huge strides is in things like sickle cell disease and thalassemia, where there is one gene that is the problem. And even if you only replace it in 50 percent of the cells, you can really drastically change somebody’s life. So I think that it is used in certain situations and is absolutely astounding and amazing. I think its utility and completely eradicating cancer is going to be something that is going to take a long time to come about. But I do acknowledge that it’s making enormous strides in understanding how everything can work, because you can quickly remove something, replace it with something else, and really understand what the function of that mutation or that gene happens to be. In terms of the artificial intelligence, I’m looking forward to seeing how it can be used.

I think it’s right. You try to find, how can I come up with the right answer? And once you think, “Oh, this should be easy, I should be able to look at somebody’s blood counts over the course of a year and be able to predict something.” But to actually be able to do that, I think, is going to take a lot more thought. So it is something that I’m hopeful that we can all start to utilize more. I think the last thing is, is some of these really fancy ways of detecting minute amounts of diseases. I think circulating DNA, which I frankly don’t know a lot about, because I don’t treat a lot of solid tumors. But also, when I look at just bone marrow disorders, like acute leukemias, we often look for something called minimal residual disease, which is this below the microscopic level. You’re looking at like one cell out of 0.001 percent of the cells.

And honestly, we don’t really know how to deal with that. And I think sometimes it ends up providing more anxiety, because you have otherwise a disease that you would say, under all historical purposes, you’re in remission, this is great. And then you have this little amount of disease. And sometimes it’s good, because it can help us determine the next steps of therapy in a more effective way. But sometimes it just creates stress, and we don’t truly know the actual meaning of it.

Lisa Hatfield:

That’s a really great point, the minimal residual disease, is we’re testing such a deep level of sensitivity. Do I want to know that much, because would it be treated anyway? Will it make a difference? Or will I be overtreating a cancer with the chemotherapy agents or agents that are more toxic? That’s a great point you bring up.

Dr. Palmer:

Yeah.

Lisa Hatfield:

So, yeah.

Dr. Palmer:

It’s a very difficult one. As we get more and more of these tests, we’re finding more stuff that we don’t really know what to do with.

Lisa Hatfield:

Yeah. So and I just want to take a step back really quick. So we were talking about the CRISPR technology. And, Dr. Sirintrapun, if you can just clarify for me, for any patients watching this, so CRISPR is the technology that is used, or the methods used to edit genes. Is that correct? It’s not an actual therapy a person can receive. But it’s the technology that’s used to edit genes.

Dr. Sirintrapun:

Yeah, it’s just the technique.

Lisa Hatfield:

Okay.

Dr. Sirintrapun:

But it’s not…but yeah, therapy is a bigger…you can imagine therapy being a big umbrella. And then the technique would be there. So it’s more…

Lisa Hatfield:

Okay. Just wanted to clarify that for people watching this, since we’re talking about that CRISPR. So and Dr. Palmer had touched a little bit on the personalized medicine for MPNs, looking at specific mutations like the JAK2 mutation, MPL mutation. Dr. Palmer, can you share some examples of how telemedicine is influencing personalized medicine in MPN care?

Dr. Palmer:

So I think one of the key…so when we look at treating different myeloproliferative neoplasms, you have to take what’s your goal of therapy. So for the ones like essential thrombocythemia, where you have too many platelets, or polycythemia vera, where there’s too many red cells. A lot of times what you’re doing there is you’re just saying, well, how can I predict whether you’re going to have a blood clot or something? Because people can live, these can be fairly chronic diseases that with appropriate therapy, people can live a long time.

So a lot of that’s risk mitigation. Where I think a lot of the personalized aspect of it is coming in is probably in myelofibrosis, which is a disease where I view it as too much inflammation, scar tissue develops in the bone marrow, people could get a large spleen, high white blood cell count. A number of different manifestations. And in that, we’re learning more and more that in addition to the three driver mutations, the JAK2, the MPL, and the calreticulin, there’s probably a whole other group of mutations that can really be used to help us predict and try to take a look into the future to help guide them. And what is the timing for transplant? Should we be more aggressive as we’re getting more and more agents being evaluated and hopefully approved in the treatment of myeloproliferative diseases? Who are the people who should utilize these agents?

Because again, you don’t want to overtreat. And so I think that being able to hone in on these different mutations to be able to help us predict what we think will happen and maybe different treatment options that we would have, that’s going to be important. Now, one of the things that’s really exciting is that some of these companies that actually do this deep sequence, like looking at multiple, multiple genes, actually have mechanisms by which they will send somebody to a person’s house and then draw the blood and take it over and run it. And so I’ve actually had that done before, where somebody I saw via telemedicine, and we really wanted to get that information so I could appropriately advise on what I anticipated was going to happen in the course of the disease.

And we were able to actually get that information through using home care, saying, I want this order to be done. The home care people went out, drew the blood, sent it to where it needed to go in the right format, and I was able to get that information. So I think that telemedicine allows them access to people who understand how to interpret that information. But I think we have to give a lot of props to a lot of these companies that are really getting innovative in how they’re capturing the data, saying, “No, you know what? You don’t need to have this done in Scottsdale, Arizona or Phoenix, Arizona. You can have this done in your own home and wherever your home happens to be.”

So I think that that type of thing is really changing some of how we can utilize that data that’s very personalized, but be able to use it in a telemedicine format where we don’t need people to physically come here to get their blood taken. Now, I do want to add the caveat. There are a number of different institutions that have enormous amounts of lab work that’s looking at things above and beyond the approved tests that have been validated and everything. And that would be a lot harder to get. There still are ways of doing that, but I think that we have to acknowledge that there is something that we do lose by doing that. Although I can get a lot of information, be able to provide a lot of input to a patient. It still doesn’t address the fact that by physically being there, sometimes you can get samples that you can biobank, and you can send to somebody’s lab. And then these are the people who are discovering the new things that really that’s how we learned what we know so far. Is because somebody went and looked at these genes and more and more and more of this is going on. So I want to temper this with saying not everything can be done by a telemedicine.

That we have to be thoughtful about our approaches and really utilize combining in-person visits along with telemedicine to really do care. And to give an example, what I do for patients is if I follow them by a telemedicine only, I won’t actually be a prescribing doctor. I won’t be a primary provider. I have to at least see them once a year if I’m going to give medicines or do things like that. So I think that there’s a hybrid model that’s going to be really important to do as well for patients who are able to do that.

Lisa Hatfield:

Thanks for that.

Dr. Palmer:

If that makes…yeah.

Lisa Hatfield:

It does make sense. And I just had a quick question too. So if I’m coming in or I’m going to see my…I’m a newly diagnosed MPN patient going into my local oncologist. I’m watching this webinar and I hear, “Oh, if somebody came to my home. I could maybe do telemedicine, or I can have somebody come to my home and take my blood and look at these genetic mutations. My local oncologist doesn’t know exactly how to go about doing that.” Would that be the point where they might try to contact a specialist or go through the consult center through Mayo Clinic or somewhere to say, “Oh, I need a specialist to help me access this type of testing?”

Dr. Palmer:

So I have to be very honest. I just learned about this type of testing in the last year or so. And so it’s something that I’ve started to be able to utilize. With myeloproliferative diseases, I think, and very honestly, and there’s a number of us specialists around the country, I think everyone seeing one at least once in terms of just saying, “Hey, what’s our plan of care going to be?” Are we looking at all the angles of it is a really important thing to do. And I think there’s a number of excellent physicians out there in different parts of the country that some of whom are using telemedicine, some I’m not sure that they are. But I think that getting that specialized opinion is extremely important. I think then in terms of managing care, there’s multiple… Give me a second, I’m sorry. There’s multiple ways that can be configured that will help take care of the patient depending on their individual needs and their ability to travel and everything.

Lisa Hatfield:

Okay. That’s really helpful. Just as someone who has an excellent local oncologist but we don’t do some of the tests here. So that’s why I see a specialist. And they send me actually a kit, a lab kit to have something sent back to Mayo Clinic. And I love that. It makes it so nice to know where I’m at with my disease. 

Okay. So, Dr. Sirintrapun, the importance of connecting to specialized care when living with a rare cancer is so paramount. But with anything comes risk and rewards. What are the risks and rewards of telemedicine and maybe even some of the limitations? You both touched on that a little bit. But if you can talk about that a little bit, that would be great.

Dr. Sirintrapun:

Yeah, I’m so glad that Dr. Palmer actually illustrated to everybody, including myself, kind of how the processes work and if you had a trial, particularly with monitoring, and getting the right tests. So being a pathologist, that’s the other hat, I look at glass slides, but I also handle a lot of tests in particular, is looking at them. And in Memorial we do those complex humongous genome panels, it’s actually become much more commonplace to have 500 genes. And as Dr. Palmer had alluded to, sometimes you don’t know out of the 500, which are really meaningful, which are not. But out of that, you do know with some of them. I see it like the initial diagnosis, at least with technology, like the complex testing being done, still centered. It’s hard to outsource that to locally.

But in terms of convenience, I can see a future where a lot of these tests can be done more closer to the patient, where they’re simpler, there’s more automation. Somebody who might be a lab tech or nurse practitioner might, the instrument might be simple enough to press a button, and you’ll get your results. And that’ll be just the right amount of genomes to monitor. Now going back to rare diseases and such, it depends on the rare disease. Because rare diseases have been kind of the classic paradigm for a clinical trial where you have to go to a centralized center because a lot of times the way rare diseases work is that they’re, at least in pathology, there centrally to an expert. Because there’s only one person that’s ever looked at it in the entire world and nobody else really knows. And you end up sending it to that guru.

And so the problem with that is that somebody has to know from the outside, “Hey, I think it’s this, I should send it to that person.” So you have, you already have friction and a gap right there. And you have the logistics of it just, okay, once it’s there and you get the diagnosis, what happens next? Can the patient who might be living from wherever be able to go and get enrolled in that trial? So you have all these different barriers that I alluded to before. So the advantage of the telemedicine is that you basically might have diminished the gap. You can bring that expert in terms of consultation to the patient who lives very far away. Now, going back to all the logistics about monitoring, if you had the right lab tests, and this is where the FDA comes in, and we don’t have time to go into the way lab tests are developed, but if the lab test is simple enough, you can do the monitoring more closer to the patient.

And in that way the clinical trial is much more enabling. They don’t have to fly somewhere, you have to go some…it all depends on how they can actually get the test to the right quality level and closer to the patient so that you can have the monitoring as more frequently, and you don’t have the cost of actually having to ship either the patient or the sample elsewhere. So things that are changing, I’m hoping, because the technology’s there, and it takes architects of clinical trials to rethink that. What’s the right technology now that we can apply it locally, so that we don’t have to do all this back and forth. And so that’s the type of thing. So going with the record, there’s lots of opportunity. I think the cautionary part would be is that tech, if you’re going to deploy something, let’s say near the patient, we call it point of care in lab testing, point of care, right?

Right, right near the patient. You have to make sure that lab test is quality, it’s actually good enough, like it met all the standards, and then you can trust the results. That’s the trick. And that’s where the cautionary part comes in. Are these things really good enough that anybody with a little experience can use it and that people can interpret the result and you can trust the result. That all these things are in place. I’m giving you the ins and outs with the way, when you want to deploy something, these are the different things you have to consider. But there’s a lot of potential as I mentioned.

Lisa Hatfield:

Sure. Great. Dr. Palmer, do you have anything that you want to share or add to that? Risks, rewards, limitations for MPN patients about telemedicine?

Dr. Palmer:

So, I think that brought up a really good point. So when we look at these tests that you can order, I think there’s a lot of companies that do very reputable tests that are even sometimes utilized by some centers. And so at the first diagnosis, I think there’s the piece that what is going to help clinically based on the knowledge that we know, and that is some of these tests that actually can, are very good quality have somebody to be deployed, draw the blood, send it to wherever and do the test. Sometimes it’s good to be at the center itself where there are actually labs and that increases the learning. I think that the architecture of the clinical trial which was a great way to put it, is going to be really important, because if I take a complete blood count, honestly, I mean, anyone can do a complete blood count and I can get the information that I really need to get out of it.

If we look at drug levels, that’s a far different animal is to make sure that these drug levels get drawn in the right way at the right time, sent to the right place. That can be a real challenge. So there are going to be different aspects of the clinical trial that can and cannot be done virtually and through outside resources. So I think that, that it’s certainly not all created equal. So there’s no way I can do the entirety of a clinical trial without physically having a patient at the center. However, on the other side of that coin, I think there’s probably a number of things, especially with like really routine visits where we’re not getting drug levels, we’re just checking a CBC, or a complete blood count or chemistries or something in the blood, that that can probably be done almost anywhere.

So it’s just going to take an extra layer of thought. I think that a lot of times you use what you know, so you say, “Well, this is how this clinical trial was run, and they have to come in, and they have to get an exam, and they have to get a CBC and they have to get everything else.” I think that there are going to be ways that we can alter that to really think what are the meaningful things we need? Like we don’t use every single solitary time point, “What are the safety measures we need to make sure we capture?” So it is going to require sort of a lot of thoughtful processing to figure out how to do that. The other thing to be cautious about is if you have the interpretation of the test.

So let’s say I send out a lab to one of the companies that does really extensive panels of genes, and then it goes back to their primary provider. They might look at that and go, “Well, geez, I don’t know what any of this actually means.” I mean, frankly, out of those 400 genes, there’s a number of them that I don’t even know how to interpret. I say, “Well, this is interesting, but these are the ones that I know are really critically important and can impact your, what I anticipate is going to happen to you. But some of these we don’t know yet.” I mean, I think that’s what we’re learning about. So doing these tests, sometimes getting these big panels can be confusing and frankly scary if you don’t have somebody there who is able to say, “Yes, these are the important ones. These are probably not that important. So it’s interesting that you have them, but we don’t need to worry about them right now.”

And so that’s really key ’cause otherwise you start to go to Dr. Google and, which is not anybody’s friend, and get yourself really terrified. So I think that that ability to put things into perspective is also, and have the ability to incorporate it into the education given and the treatment plan is really critical. So again, a hybrid model is really necessary for a lot of these to work well. And how that hybrid model works is going to be dependent on the disease type, the clinical trial in that situation. But I think that there are ways to do it, and I personally in my own practice have created a set of rules that I’m like, “Okay, well, for this and this and this and for this you have to do that and I need to do this.” So I have certain things set up to make sure that I feel like I am providing safe-care, but also being able to provide it virtually.

Lisa Hatfield:

Great. That’s great information too. And I am guilty of using Dr. Google probably more often than talking to my doctor. So most of your patients probably are, and they just won’t admit it. So I’ll admit it for all of us. [chuckle] Yes, thanks for explaining that. So I think we’re going to talk just a little bit, we’re going to move on to talking about best practices for MPN patients and families using telemedicine. Dr. Palmer, we’ll just start with you and then talk to Dr. Sirintrapun about that. But what are the best practices for MPN patients utilizing telemedicine? And what are some of the newer technologies that we’ve even talked about today that are being explored that you’re most excited about?

Dr. Palmer:

Well, again, I think it’s hard to say the right way to use telemedicine. I think that, as much as automation and trying to come up with processes that are very standard is important, I think it is still a learning process. How long is it safe to do telemedicine? How many, if I’m the only provider seeing this person and there’s not somebody physically looking at them, am I doing a disadvantage? So like, what’s the safety realm in that? I mean, that is something that I know comes up, and it comes up with a lot of physicians, like, “Well, I have to examine the patient, I have to eyeball the patient.” So trying to figure out that balance of making sure you’re providing good quality and safe care, but that you’re also allowing for people to have access to things they otherwise wouldn’t have access to.

And some of that is a matter of having good collaborations with providers in different places and the willingness of the local providers to work with one of us. And some of that’s just kind of saying, “Well, I’m going to try this.” And then after a while if you say, “Hey, this isn’t working well,” then you switch it. But I think a lot of this is something that you can’t prescribe. It is something that needs to be the level of comfort for the provider, the level of comfort for the local provider and the patient. And it’s not going to be the same for any two patients. There certainly is going to be some variability. I’m very excited about the ongoing telemedicine and our ability to utilize it. I’m really hoping that even after the public health emergency, some of the barriers to being able to provide telemedicine outside of your own state will not be a problem. And I think each institution’s handling it a little bit differently.

So that’s something I’m excited for, and there’s probably going to be a lot more that I can’t even begin to think about that’s going to come up in terms of ways that people can, like there’s handheld imaging machines and stuff like that. Is there going to be a way that we can actually have patients apply it? So, for example, I like to feel spleens in patients who have myeloproliferative diseases, because they’re often enlarged. Is there going to be a way that there’s some type of equipment or some type of material that can do a spleen exam without me actually having to physically see the patient and lay hands on them? This is something that I probably, people are thinking about who are a lot smarter than me. And I’m looking forward to something like that being developed. But that’s what I’m hopeful is that we get to the point where I can feel like I’m providing really top quality care to people who could be anywhere in the United States or even honestly the world.

Lisa Hatfield:

Yeah. That’s fascinating. And from the patient perspective, again, it gives me a lot of hope to think that there might be a way to complement the care that we’re receiving locally through telemedicine. So, Dr. Sirintrapun, we’re always looking for hope, we cancer patients. So what are some of the novel technologies and therapies that you’re most excited about?

Dr. Sirintrapun:

Oh, my gosh. Let me just say that it’s great to be excited and I spend a lot of…what keeps me going is just being excited about things. But it’s also important not to be reckless. And I think for a lot of people that are in this technology thing, you see the balance between, well, you don’t even necessarily see the balance. They’re more excited, and then you overstep. And so that’s really the guiding principle, excited but not too reckless to take things with caution to study, learn from things. And I really appreciate Dr. Palmer sharing that, because she brought up a lot of different points. Like as you move forward, you have to consider X, Y, Z, I think a lot of the audiences heard that. That said, I’m excited about a lot and getting a little wonky with the technical things.

I’m excited about the mobile technologies, I don’t exactly know this is going to be somebody else more creative than myself about how do we incorporate that? These different biosensors, if heart rate’s important and that’s a side effect of a drug, how do you incorporate that into the healthcare information system? I’m going to put a little knock on the healthcare information systems or a little less technologically advanced is then what you see with the iWatch. I would argue that the stuff with iPhones is much more advanced to the dismay of many patients…maybe surprise of many patients. [laughter] We deal with some old technologies in healthcare. And so how do we incorporate these new technologies into this old ecosystem? But that said, there’s a lot of potential wearables, biosensors testing that could be close to point of care on the connectivity aspect with the 5G and stuff.

I don’t fully know all the 5G aspects, but think of the prior Gs that were there that allowed for GPS and all these different things that were not possible when you had 1G. Now we have 5G. Who knows what you could do. You can actually apply AI in real time before you would take 10 minutes to process it. Now it’s just happening somewhere at a cloud close by, and it’s happening very quickly. You can imagine all that. So things like robotic surgeries can happen. Processing of immense data can happen very quickly. You can get your information without waiting a day or two weeks. So those things are very disruptive, and I’m excited about that. I’m hoping that the players that are out there also keep the cautionary aspect that as you move forward, don’t jump too soon.

Try to learn things. Do not overpromise. Because it’s a thing for patients as well. I mean, many physicians don’t necessarily know they’re not, when you see something, they’re enamored by it. But the questions you should ask, “Is it ready? Has it been through the paces yet? Can I trust it enough?” And that’s the part that…and I try to maintain it, and I hope as people go and innovate that they don’t overpromise on things. Think the Theranos aspect, we could do all this X, Y, Z. That’s one lesson and there’s going to be more. Trust me, that’s not the end of it. Because as I mentioned, people tend to get excited, but it’s also very important to be cautious and not reckless. And I think that’s the lesson I would convey to anybody excited about this.

But there is a lot excitement, there’s a lot of potential people who think very smartly about it can think of all the different cautionaries of how to implement it because it’s all about the implementation. How do you make sure it’s ready, and you can implement it correctly so that the people that are using it and people that have to interpret it and the people that it’s going to impact it all matches? It actually really is appropriate for that time that, that’s beyond just the technical. That’s why I said I…hen I said informatics, it’s people processes. It’s not just the technology I wanted to focus on it, it’s the entire picture of things. And so that’s it. That’s kind of the way I sort of see us moving forward. 

Lisa Hatfield:

We’re moving forward. We are progressing, but we have to take caution in how we implement. So yeah, that makes a lot of sense. Thank you for that. So I have a lot more questions, but it’s time for us to wrap up and you spend a lot of time with me as a patient helping me and hopefully with other patients watching this. It’s really refreshing to hear about advances in technology that can potentially extend my life and the lives of other patients living with life-threatening conditions. We appreciate all the new tools, we appreciate all the information being put together, and utilized to help cancer patients everywhere. And thank you so much. I don’t have an MPN like I mentioned before. I have multiple myeloma, and I have been dealing with that for four years.

I’m looking forward to a technology someday where I don’t have to have bone marrow biopsies to determine how much cancer I have in my bone marrow. But that might be a pipe dream. I don’t know. [laughter] So anyway, thank you so much for spending time with us, Dr. Palmer and Dr. Sirintrapun. We really appreciate the time and as a patient myself, I’m always grateful when you come on these programs. I watch webinars all the time to get more information, so I can better advocate for myself or for my friends who have cancer. So thank you so much for your time and for your expertise. Really appreciate it.

And just a reminder to anyone watching this program to always consult with your own medical team about what is right for you and about your own healthcare. Thank you again, Dr. Palmer and Dr. Sirintrapun. Hopefully, we’ll see you again on a future webinar. Thank you.

How Does CLL Affect the Immune System?

How Does CLL Affect the Immune System? from Patient Empowerment Network on Vimeo.

Chronic lymphocytic leukemia (CLL) expert Dr. Seema Bhat explains how a patient’s immunity is affected by the disease and strategies for management.  

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:

Educational Resources for CLL Patients

Educational Resources for CLL Patients

CLL and Anxiety: How Your Healthcare Team Can Help

Setting CLL Treatment Goals WITH Your Team

Transcript:

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, NK cells. 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 every 4 to six weeks, which reduce the chance of these infections. 

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.

See More from Thrive CLL

Related Resources:

Understanding CLL Treatment Classes

Understanding CLL Treatment Classes

Educational Resources for CLL Patients

Educational Resources for CLL Patients

CLL and Anxiety: How Your Healthcare Team Can Help

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. 

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. 

Tips for Managing Your Oral CLL Treatment Schedule

Tips for Managing Your Oral CLL Treatment Schedule from Patient Empowerment Network on Vimeo.

Patients taking an oral CLL therapy have a responsibility in managing their own care. Dr. Jean Koff, a CLL expert from Winship Cancer Institute of Emory University, discusses the importance of staying on schedule with medications and shares advice for being consistent.

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:

With oral medications available to treat CLL, patients now have the role of self-administering with their treatment program. How does this work exactly?  

Dr. Jean Koff:

So, just as you would receive a prescription from one of your doctors to manage your high blood pressure with a bottle of pills, you would also receive a special prescription from the doctor who is managing your CLL, a prescription for one of these oral agents. Either the BTK inhibitors or a venetoclax. And you would be – you would have the instructions on the pill bottle, just as you would you know another prescription, and you would take the medication by mouth, every day, as instructed.  

Katherine Banwell:

Okay. What happens if a patient forgets to take their medication? Does it impact efficacy? 

Dr. Jean Koff:

So, forgetting a dose for one day, or having to skip a dose for another reason, or even a few days, shouldn’t have a major impact on controlling the CLL. And that’s true for two reasons. One, you’re going to start taking your medication again, you know fairly soon after you miss that dose. The next day or – or in a few days. But also, the – what we call the half-lives of these drugs are relatively long, and so you have some activity of the drug in your system in its ability to control the CLL, even though you haven’t taken the dose that you missed that day. In fact, sometimes we have to hold CLL medications.  

Maybe you’re getting a procedure, some sort of surgical procedure, and you might be at an increased risk of bleeding just in the day or two before and after that surgical procedure, so we would actually recommend that you hold a BTK inhibitor, if that was what you were receiving for your CLL, and then resume it once your risk of bleed had gone down a few days after the surgery.   

We do recommend that if you are going to miss a dose of your medication that you let your clinical team know, just so they can instruct you on how to resume your dose if you haven’t already gotten instructions from them about that. 

Katherine Banwell:

Okay. That’s really helpful information. What strategies are there to keep on schedule and remember to take the medication on time and regularly?  

Dr. Jean Koff:

So, I think these strategies are good whether you have CLL or some other type of disorder that you’re taking medication for. My patients often use labeled pill boxes with days of the week and a.m. and p.m., so that you know whether you took your pill that day and what time of day you took it. And so, setting that out for the week can be very helpful in organizing and making sure that you can check back and remind yourself whether or not you took your pill. 

Katherine Banwell:

How are patients monitored during treatment?  

Dr. Jean Koff:

So, your doctor is going to monitor you more closely when you first start a medication. So, I typically monitor my patients within one or two weeks of them starting an oral drug. One to make sure that they’re feeling okay on it, that they’re not having any side effects when they first start, but also to check lab values and make sure that the – the oral medication isn’t causing any problems with their blood counts or with other labs. Then, once we’ve established that they’re doing well on the medication, maybe they’ve come in every couple weeks for a month or six weeks, we start to space out those visits.  

I usually see my patients who are on active therapy about every three to six months to check and see whether they’re feeling okay, whether they’re having any side effects from the medicines, like I said to check their labs, make sure the medications aren’t causing any lab abnormalities. And also in the longer term, to make sure that their CLL is under good control on – on the medications. Because that’s one of our main goals is to keep the CLL under good control.  

Can a CLL Patient’s Response to the COVID Vaccine Be Boosted?

Can a CLL Patient’s Response to the COVID Vaccine Be Boosted? from Patient Empowerment Network on Vimeo.

Is there a way to boost COVID vaccine response in patients with CLL? Dr. Jean Koff explains ongoing progress being made to protect CLL patients from COVID.

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:

We received another patient question prior to the program. Has there been any progress in helping CLL patients get a better reaction from COVID vaccines? 

Dr. Jean Koff:

That is a great question, and that is one that is near and dear to my heart and my colleagues at – at Emory. You raise a really good point, which is that CLL patients have altered immune systems just by virtue of their CLL. The CLL cells exert their influence on other immune cells and can cause your immune system not to respond to infections or immunizations the way it normally would. That’s without any medication in the mix. Now, when we look at patients who are on medications like the ones we’ve been talking about, the BTK inhibitors, venetoclax (Venclexta), but especially the monoclonal antibodies that react against CD20, we see that those patients really do not have an optimal response to vaccines, especially the COVID vaccine. 

Meaning, that patients who receive the COVID vaccine while they’re on that therapy, or even within 12 months of receiving a monoclonal antibody, often don’t mount the same strong immune response as somebody who’s not on those therapies. So, luckily, we – we don’t have to just depend on the vaccines. I still recommend that my patients get vaccinated, because it is safe and it might impart a little bit of efficacy, and it’s certainly more effective than not getting the vaccine. But we also have other approaches to increasing your protection against COVID, including the – the injection called tixagevimab co-packaged with cilgavimab (Evusheld), which can help protect patients specifically whose immune systems are not completely normal and are not expected to mount a strong response to COVID vaccines.  

So, that is definitely a discussion to have with your doctor about how your medications impact your protection from COVID, from vaccines, and whether there are other medications that might be used to help increase your protection.   

Katherine Banwell:

That’s great advice.  

What is YOUR Role in Choosing a CLL Treatment Approach?

What Is YOUR Role in Choosing a CLL Treatment Approach? from Patient Empowerment Network on Vimeo.

Dr. Jean Koff shares her perspective on the role of patient when deciding on a CLL treatment approach and reviews key factors that should be considered.

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 is the patient’s role in deciding on a treatment plan? 

Dr. Jean Koff:

So, it’s very important that the patient be involved in deciding on a treatment plan. Especially in first-line. Because we have these two excellent classes of agents, the BTK inhibitors and the venetoclax- containing regimens. Both of them have been shown to have very good what we call efficacy CLL, meaning that they’re able to control the disease, patient’s symptoms largely at bay for long periods of time. You know, we’re talking an average of years that – that patients are on these therapies. And they each, like I said have different side effect profiles.  

And they’re given in slightly different ways. And so, right now we don’t have data from our clinical trials comparing a BTK inhibitor regimen to a venetoclax-containing regimen in CLL patients to tell us one is better than the other. And so, for that reason, a lot of the decision-making about which therapy is going to be better for you, or which therapy you would prefer, lies with the CLL patient rather than with the doctor. And the things that I ask my patients to consider, there are a couple different things. One is the side effect profile. So, patients may be more or less comfortable with certain  

side effects of one drug compared to another. Or there may be something in the patient’s medical history that puts them more at risk for a certain side effect than another. 

The other major player in this decision-making process is how these drugs are given. So, with ibrutinib (Imbruvica), the ibrutinib is given as a pill that you take once a day, and you take it indefinitely. Meaning you take that pill once a day for as long as it’s doing what it’s supposed to do, which is keeping your CLL under control, and as long as the patient is tolerating it well, meaning you’re not having a lot of uncomfortable side effects from the ibrutinib. So, I have patients who have been on ibrutinib for years and years and years and years.  

The venetoclax-containing regimen for patients who are getting their first-line treatment in CLL is different. It is designed as a – what we call time-limited therapy. And so, this regimen is given in – over about 12 months, 12 or 13 months, and then stopped, as long as the patient has had a good response. The other thing to consider with the venetoclax r egimen, it’s not just the pill. You do take a pill every day, but you also get a – an infusion for about six months of the monoclonal antibody. Meaning that you’ll have to come into the infusion center and get an infu – an IV infusion of this drug called obinutuzumab. The last consideration with the venetoclax regimen that differs in how it’s administered, is the venetoclax often works so well that it can break down the CLL cells a little bit too quickly. And so, for patients who have a very, very high white count, or large lymph nodes due to their CLL, there is a risk of something we call tumor lysis syndrome, which refers to the process where the tumor cells break down very, very quickly, and they produce molecules that are released into the bloodstream that can be dangerous if they get too high or too low. And so, sometimes, in some patients we have to monitor for the tumor lysis syndrome by checking labs fairly frequently after we start the venetoclax. And for some patients that means they have to stay overnight for a night or two in the hospital for lab monitoring.  

So, for some of my patients that I talk to about venetoclax, they say I want to stay out of the hospital, I just want to take a pill, I’m fine taking a pill, I’ll go with the BTK inhibitors. For other patients, they say I don’t want to be on a pill every single day, I will go through this year of therapy, I’m comfortable with that, and I’m happy that I’ll be able to take a break from therapy after one year. So, that ends up being a large factor in many of the conversations I have with my patients about which therapeutic approach we’re going to use in front-line therapy.  

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.  

What Are the Current CLL Treatment Options?

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

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

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

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Transcript:

Katherine Banwell:

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

Dr. Jean Koff:

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

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

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

Katherine Banwell:

Mm-hmm.   

Dr. Jean Koff:

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

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

Katherine Banwell:

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

Dr. Jean Koff:

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

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

Katherine Banwell:

Where do clinical trials fit into CLL treatment? 

Dr. Jean Koff:

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

Katherine Banwell:

Are there any other options available for CLL patients?  

Dr. Jean Koff:

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

Katherine Banwell:

Mm-hmm. 

Dr. Jean Koff:

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

How Are CLL Symptoms Treated?

How Are CLL Symptoms Treated? from Patient Empowerment Network on Vimeo.

Dr. Jean Koff reviews common CLL symptoms and explains why patients should discuss any issues they experience with their healthcare teams.

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.

See More from Thrive CLL

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Transcript:

Katherine Banwell:

One part of thriving with CLL is managing the symptoms of the disease. What are the common symptoms of CLL? 

Dr. Jean Koff:

So, one thing that I see with nearly all of my CLL patients, regardless of where they are in the CLL journey, and regardless of whether they need active medications to manage their CLL, is some degree of fatigue. And this can range from just mild fatigue that patients notice that they need a little bit of a breather in the middle of the day, to needing more sleep at night, to not being able to exercise as much as they’re used to. And that is by far one of the most common symptoms we see. Again, whether or not their disease needs medication to manage it.  

The classic symptoms of CLL that often let us know that it’s time to start medical management are not just this fatigue. But the classic symptoms are  B symptoms. And we describe those as fevers, night sweats, and unintentional weight loss. Those are very common. And then some patients with CLL will also have what we call palpable lymphadenopathy, which is our term for lymph nodes that are enlarged that you can feel. And the most common places to feel these on the body are on the neck, under the arms, and in the groin.  

Katherine Banwell:

Okay. How are symptoms treated? 

Dr. Jean Koff:

So, if your symptoms progress to the point that your doctor thinks you need medication – they’re becoming disruptive to your life, or they are getting worse and worse over time, then there are a variety of medications that we can use in CLL. And this is actually a very exciting field. Right now, the state of the field is that most patients who are starting on their first treatment for CLL will use some sort of oral medication, and that may be accompanied by an IV – what we call monoclonal antibody, or it may not. But one thing that has really changed even since I very first started practicing, is that we no longer commonly use what I would call conventional chemotherapy to treat CLL – even though this was the standard of care just a few years ago. 

Katherine Banwell:

Wow. So, a lot has changed. 

Dr. Jean Koff:

Yes, definitely. 

Thriving With CLL: Your Role in Managing Your Care

Thriving with CLL: Your Role in Managing Your Care from Patient Empowerment Network on Vimeo.

 How can patients thrive with chronic lymphocytic leukemia (CLL)? Dr. Jean Koff discusses CLL treatments approaches, strategies for managing disease symptoms and treatment side effects, and shares advice on how patients can be proactive in their care.

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.

Download Resource Guide

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CLL Treatment Approaches: What Are the Types?

Transcript:

Katherine Banwell:  

Hello, and welcome. I’m Katherine Banwell, your host for today’s program. Today we’re going to discuss what it means to thrive with CLL. And how you can play an active role in your care. Before we meet our guest, let’s review a few important details. The reminder email you received about this program contains a link to program materials. If you haven’t already, click that link to access information to follow along during the webinar. At the end of this webinar, you’ll receive a link to a program survey. Please take a moment to provide feedback about your experience today, in order to help us plan future webinars.  

And finally, before we get into the discussion, please remember that this program is not a substitute for seeking medical advice. Please speak to your healthcare team about what might be best for you. Well, let’s meet our guest today. Joining me is Dr. Jean Koff. Dr. Koff, welcome! Would you please introduce yourself? 

Dr. Jean Koff:

Hi, I’m Jean Koff. I’m a lymphoma and CLL specialist from Emory University and it’s a pleasure to be with you here today. 

Katherine Banwell:

Thank you for taking the time to join us. We start all of our webinar in our CLL Thrive series with the same question. In your experience, what does it mean to thrive with CLL? 

Dr. Jean Koff:

So, I think thriving with CLL means that a patient is informed about their disease, they are comfortable with the physician who’s helping them navigate their disease and their management plan. And their management plan, whatever that might be, is really allowing them to focus on their life outside of CLL. So, keeping their symptoms to the absolute minimum, their physician keeping them informed about their disease progress, or lack thereof, in terms of keeping the disease at bay so they can focus on all of those things that bring them enjoyment outside of the CLL world. 

Katherine Banwell:

That’s great. Thank you for your perspective. One part of thriving  with CLL is managing the symptoms of the disease. What are the common symptoms of CLL? 

Dr. Jean Koff:

So, one thing that I see with nearly all of my CLL patients, regardless of where they are in the CLL journey, and regardless of whether they need active medications to manage their CLL, is some degree of fatigue. And this can range from just mild fatigue that patients notice that they need a little bit of a breather in the middle of the day, to needing more sleep at night, to not being able to exercise as much as they’re used to. And that is by far one of the most common symptoms we see. Again, whether or not their disease needs medication to manage it. The classic symptoms of CLL that often let us know that it’s time to start medical management, are not just this fatigue. But the classic symptoms are B symptoms. And we describe those as fevers, night sweats, and unintentional weight loss. Those are very common. And then some patients with CLL will also have what we call palpable lymphadenopathy, which is our term for lymph nodes that are enlarged that you can feel. And the most common places to feel these on the body are on the neck, under the arms, and in the groin.  

Katherine Banwell:

Okay. How are symptoms treated? 

Dr. Jean Koff:

So, if your symptoms progress to the point that your doctor thinks you need medication – they’re becoming disruptive to your life, or they are getting worse and worse over time, then there are a variety of medications that we can use in CLL. And this is actually a very exciting field. Right now, the state of the field is that most patients who are starting on their first treatment for CLL will use some sort of oral medication, and that may be accompanied by an IV – what we call monoclonal antibody, or it may not. But one thing that has really changed even since I very first started practicing, is that we no longer commonly use what I would call conventional chemotherapy to treat CLL. Even though this was the standard of care just a few years ago. 

Katherine Banwell:

Wow. So, a lot has changed. 

Dr. Jean Koff:

Yes, definitely. 

Katherine Banwell:

Why is it so important for patients with CLL to speak up and communicate with their healthcare team about some of their symptoms? 

Dr. Jean Koff:

Well, for starters we want you to feel better. That’s our number one job as – as physicians, is we want to get you to feeling to – to where you are feeling like your best self. CLL or not. So, we want to make you feel better. But in CLL your symptoms are actually one of the criteria we consider when we’re thinking about whether or not we need to start a new therapy, or if you’re somebody who’s already on therapy, whether we need to change your therapy. So, it’s actually very important and your CLL doctor should be checking in with you regularly to see if you have new or worsening symptoms that might be due to your CLL.  

Katherine Banwell:

Mm-hmm. It sounds like treatment of the disease is key to controlling your symptoms. So, let’s talk about treatment. Many patients are overwhelmed by the different types and classes of treatment. When is it time to treat CLL, and what are the options?  

Dr. Jean Koff:

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

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

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

Katherine Banwell:

Mm-hmm.   

Dr. Jean Koff:

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

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

Katherine Banwell:

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

Dr. Jean Koff:

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

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

Katherine Banwell:

Where do clinical trials fit into CLL treatment? 

Dr. Jean Koff:

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

Katherine Banwell:

Are there any other options available for CLL patients? 

Dr. Jean Koff:

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

Katherine Banwell:

Mm-hmm. 

Dr. Jean Koff:

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

Katherine Banwell:

Mm-hmm. 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 and acalabrutinib, 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 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.  

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. What is the patient’s role in deciding on a treatment plan? 

Dr. Jean Koff:

So, it’s very important that the patient be involved in deciding on a treatment plan. Especially in first-line. Because we have these two excellent classes of agents, the BTK inhibitors and the venetoclax- containing regimens. Both of them have been shown to have very good what we call efficacy in CLL, meaning that they’re able to control the disease, patient’s symptoms largely at bay for long periods of time. You know, we’re talking an average of years that – that patients are on these therapies. And they each, like I said have different side effect profiles.  

And they’re given in slightly different ways. And so, right now we don’t have data from our clinical trials comparing a BTK inhibitor regimen to a venetoclax-containing regimen in CLL patients to tell us one is better than the other. And so, for that reason, a lot of the decision-making about which therapy is going to be better for you, or which therapy you would prefer, lies with the CLL patient rather than with the doctor. And the things that I ask my patients to consider, there are a couple different things. One is the side effect profile. So, patients may be more or less comfortable with certain side effects of one drug compared to another. Or there may be something in the patient’s medical history that puts them more at risk for a certain side effect than another. 

The other major player in this decision-making process is how these drugs are given. So, with ibrutinib, the ibrutinib is given as a pill that you take once a day, and you take it indefinitely. Meaning you take that pill once a day for as long as it’s doing what it’s supposed to do, which is keeping your CLL under control, and as long as the patient is tolerating it well. Meaning you’re not having a lot of uncomfortable side effects from the ibrutinib. So, I have patients who have been on ibrutinib for years and years and years and years.  

The venetoclax-containing regimen for patients who are getting their first-line treatment in CLL is different. It is designed as a – what we call time-limited therapy. And so, this regimen is given in – over about 12 months, 12 or 13 months, and then stopped. As long as the patient has had a good response. The other thing to consider with the venetoclax regimen, it’s not just the pill. You do take a pill every day, but you also get a – an infusion for about six months of the monoclonal antibody. Meaning that you’ll have to come into the infusion center and get an infu – an IV infusion of this drug called Obinutuzumab. The last consideration with the venetoclax regimen that differs in how it’s administered, is the venetoclax often works so well that it can break down the CLL cells a little bit too quickly.  

And so, for patients who have a very, very high white count, or large lymph nodes due to their CLL, there is a risk of something we call Tumor lysis syndrome, which refers to the process where the tumor cells break down very, very quickly, and they produce molecules that are released into the bloodstream that can be dangerous if they get too high or too low. And so, sometimes, in some patients we have to monitor for the Tumor lysis syndrome by checking labs fairly frequently after we start the venetoclax. And for some patients that means they have to stay overnight for a night or two in the hospital for lab monitoring.  

So, for some of my patients that I talk to about venetoclax, they say I want to stay out of the hospital, I just want to take a pill, I’m fine taking a pill, I’ll go with the BTK inhibitors. For other patients, they say I don’t want to be on a pill every single day, I will go through this year of therapy, I’m comfortable with that, and I’m happy that I’ll be able to take a break from therapy after one year. So, that ends up being a large factor in many of the conversations I have with my patients about which therapeutic approach we’re going to use in front-line therapy. 

Katherine Banwell:

Hm. Dr. Koff, we received a patient question prior to the program. If I’ve had FCR for my first treatment, does that prevent me from having – or having to take an oral drug later on? 

Dr. Jean Koff:

Absolutely not. So, the very first clinical trials that we did studying these regiments, especially the BTK inhibitors, were performed in patients who had received conventional chemotherapy like FCR. And what we saw is that patients who had received conventional chemotherapies and had – and needed retreatment of their CLL responded very, very well to agents like ibrutinib. And ibrutinib was able to control their disease, control their CLL, without them needing additional therapy for a long time. And that was actually the original indication for ibrutinib, was patients who had what we call relapsed CLL, often after these conventional therapies.   

Katherine Banwell:

Hm. Let’s turn to medication management. Excuse me. With oral medications available to treat CLL, patients now have the role of self-administering with their treatment program. How does this work exactly? 

Dr. Jean Koff:

So, just as you would receive a prescription from one of your doctors to manage your high blood pressure with a bottle of pills, you would also receive a special prescription from the doctor who is managing your CLL, a prescription for one of these oral agents. Either the BTK inhibitors or a venetoclax. And you would be – you would have the instructions on the pill bottle, just as you would you know another prescription and you would take the medication by mouth, every day, as instructed. 

Katherine Banwell:

Okay. What happens if a patient forgets to take their medication? Does it impact efficacy? 

Dr. Jean Koff:

So, forgetting a dose for one day, or having to skip a dose for another reason, or even a few days, shouldn’t have a major impact on controlling the CLL. And that’s true for two reasons. One, you’re going to start taking your medication again, you know fairly soon after you miss that dose. The next day. Or – or in a few days. But also, the – what we call the half-lives of these drugs are relatively long, and so you have some activity of the drug in your system in its ability to control the CLL, even though you haven’t taken the dose that you missed that day. In fact, sometimes we have to hold CLL medications.   

Maybe you’re getting a procedure, some sort of surgical procedure, and you might be at an increased risk of bleeding just in the day or two before and after that surgical procedure, so we would actually recommend that you hold a BTK inhibitor, if that was what you were receiving for your CLL, and then resume it once your risk of bleed had gone down a few days after the surgery.  

Katherine Banwell:

Hm. 

Dr. Jean Koff:

We do recommend that if you are going to miss a dose of your medication that you let your clinical team know, just so they can instruct you on how to resume your dose if you haven’t already gotten instructions from them about that. 

Katherine Banwell:

Okay. That’s really helpful information. What strategies are there to keep on schedule and remember to take the medication on time and regularly?  

Dr. Jean Koff:

So, I think these strategies are good whether you have CLL or some other type of disorder that you’re taking medication for. My patients often use labeled pill boxes with days of the week and a.m. and p.m., so that you know whether you took your pill that day and what time of day you took it. And so, setting that out for the week can be very helpful in organizing and making sure that you can check back and remind yourself whether or not you took your pill. 

Katherine Banwell:

How are patients monitored during treatment? 

Dr. Jean Koff:

So, your doctor is going to monitor you more closely when you first start a medication. So, I typically monitor my patients within one or two weeks of them starting an oral drug. One to make sure that they’re feeling okay on it, that they’re not having any side effects when they first start, but also to check lab values and make sure that the – the oral medication isn’t causing any problems with their blood counts or with other labs. Then, once we’ve established that they’re doing well on the medication, maybe they’ve come in every couple weeks for a month or six weeks, we start to space out those visits.  

I usually see my patients who are on active therapy about every three to six months to check and see whether they’re feeling okay, whether they’re having any side effects from the medicines, like I said to check their labs, make sure the medications aren’t causing any lab abnormalities. And also in the longer term, to make sure that their CLL is under good control on – on the medications. Because that’s one of our main goals is to keep the CLL under good control.  

Katherine Banwell:

We received another patient question prior to the program. Has there been any progress in helping CLL patients get a better reaction from COVID vaccines? 

Dr. Jean Koff:

That is a great question, and that is one that is near and dear to my heart and my colleagues at – at Emory. You raise a really good point, which is that CLL patients have altered immune systems just by virtue of their CLL. The CLL cells exert their influence on other immune cells and can cause your immune system not to respond to infections or immunizations the way it normally would. That’s without any medication in the mix. Now, when we look at patients who are on medications like the ones we’ve been talking about, the BTK inhibitors, venetoclax, but especially the monoclonal antibodies that react against CD20, we see that those patients really do not have an optimal response to vaccines, especially the COVID vaccine. 

Meaning, that patients who receive the COVID vaccine while they’re on that therapy, or even within twelve months of receiving a monoclonal antibody, often don’t mount the same strong immune response as somebody who’s not on those therapies. So, luckily, we – we don’t have to just depend on the vaccines. I still recommend that my patients get vaccinated, because it is safe and it might impart a little bit of efficacy, and it’s certainly more effective than not getting the vaccine. But we also have other approaches to increasing your protection against COVID, including the – the injection called Evusheld, which can help protect patients specifically whose immune systems are not completely normal and are not expected to mount a strong response to COVID vaccines.  

So, that is definitely a discussion to have with your doctor about how your medications impact your protection from COVID, from vaccines, and whether there are other medications that might be used to help increase your protection.  

Katherine Banwell:

That’s great advice. Dr. Koff I’d like to get your thoughts on where we stand with progress with helping people live longer and truly thrive with CLL. What would you like to leave the audience with? 

Dr. Jean Koff:

So, I think that one thing to remember with CLL is over the past few years we’ve seen an explosion in how we manage the disease because we have newer agents and therapeutic combinations that are helping people control their CLL for much longer than was possible 10 or 15 years ago. We still have a long way to go because ideally, we want every patient to be able to control their CLL and thrive with CLL for as long as possible. And, right now like I said before, we are not curing patients yet. Meaning that we don’t have a therapy that can get rid of the CLL, make it go away, and keep it away forever.  

That’s where clinical trials come in. That’s where we are able to make progress, is we’re able to study what therapies work, what therapies don’t, how they perform against each other, how they make patients feel, and what sort of side effects might be associated with them. And so, that’s really the next step, is continuing the work that has already been done in clinical trials and exploring these new therapeutical approaches. 

Katherine Banwell:

Dr. Koff, thank you so much for taking the time to join us today.   

Dr. Jean Koff:

Thank you for having me. 

Katherine Banwell:

And thank you to all of our collaborators. If you would like to watch this webinar again, there will be a replay available soon. You’ll receive an email when it’s ready. And don’t forget to take the survey immediately following this webinar. It will help us as we plan future programs. To learn more about CLL and to access tools to help you become a more proactive patient, visit powerfulpatients.org. I’m Katherine Banwell. Thanks so much for being with us today.