Tag Archive for: chronic lymphocytic leukemia

CLL Treatment: Finding the Best Option for YOU

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CLL Treatment: Finding the Best Option for YOU from Patient Empowerment Network on Vimeo.

How could genetic testing results impact your chronic lymphocytic leukemia (CLL) treatment options and overall care? Dr. Jennifer Woyach discusses essential molecular testing and provides tools for self-advocacy and decision making.

Dr. Jennifer Woyach is a hematologist-oncologist specializing in chronic lymphocytic leukemia (CLL) at Ohio State’s Comprehensive Cancer Center – James Cancer Hospital & Solove Research Institute. Find out more about this expert here. 

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Transcript:

Katherine:                  

Welcome to Insist CLL, a program focused on empowering chronic lymphocytic leukemia patients to take an active role and insist on better care. Today, we’ll discuss the latest advances in CLL, including the role of genetic testing and how this may affect treatment options. I’m Katherine Banwell, your host for today’s program. Joining me is Dr. Jennifer Woyach. Welcome. Would you please introduce yourself?

Dr. Woyach:               

Sure. My name is Jennifer Woyach. I’m a CLL specialist from the Ohio State University.

Katherine:                  

Thank you. A reminder, this program is not a substitute for seeking medical advice. Please refer to your own healthcare team. Well, Dr. Woyach, let’s start by understanding CLL. Would you briefly walk us through what CLL actually is?

Dr. Woyach:               

Sure. CLL is a cancer of the blood, the lymph nodes, and the bone marrow.

And it happens when a particular type of white blood cell called a B lymphocyte acquires genetic mutations and transforms into a cancer cell. And then, over time, those cancer cells continue to grow and divide. And they can cause symptoms such as enlarged lymph nodes if the cells get stuck in the lymph nodes and continue to grow there. It can cause a high white blood cell count, which usually doesn’t cause any symptoms but is one of the things that we see often in CLL. And then, it can also cause the bone marrow to not be able to produce normal cells because it can get so infiltrated or so full of CLL cells.

And this can cause things like anemia, which is lowering of the red blood cell count and thrombocytopenia, which is lowering of your platelet count.

Katherine:                  

What are the steps involved in reaching a diagnosis?

Dr. Woyach:               

CLL is an interesting disease because it’s one of the only cancers that does not require a biopsy of something for a diagnosis.

So, we can, actually, make the diagnosis of CLL based on the peripheral blood. So, just a blood draw in somebody’s doctor’s office. Usually, CLL is diagnosed in the asymptomatic stage. So, somebody goes to their primary care doctor, has blood drawn usually for another reason, and is found to have a high white blood cell count or sometimes even a fairly normal white blood cell count but a high percentage of lymphocytes. That certain type of cancerous white blood cell. So, the next step in the diagnosis then is something called peripheral blood flow cytometry, which is a specialized test where we look at the markers or antigens on the surface of white blood cells.

So, there is kind of a code of these markers on the surface of all of your blood cells that can tell what type of cells they are. So, for CLL in particular, we’ll see that the cells express some of the normal markers we would see on a normal B lymphocyte.

Things like CD19, CD20, CD23. But they also express a marker called CD5, which is found on normal T lymphocytes but shouldn’t be found on B lymphocytes. And so, this collection of surface markers can make the diagnosis of CLL. Sometimes, we do need to do extra studies like a bone marrow biopsy or a lymph node biopsy. But often times, those are not necessary at the time of diagnosis.

Katherine:                  

When you meet with patients, Dr. Woyach, what are some common misconceptions that you hear about?

Dr. Woyach:               

I think the biggest thing that I hear, and grant it I see a lot of patients after they’ve been diagnosed by someone, gone to see an oncologist and then, come to me after, but one of the common things that I hear is that somebody has told them along the way that they have the good type of cancer, which I think is not a very helpful thing to hear as a patient because, of course, no cancer is a good type of cancer.

I think it’s important to note that CLL is one that has a lot of treatment options and usually extended survival. But I think that’s one of the most common misconceptions that I hear.

Katherine:                  

Before we get deeper into our conversation about genetics, there are a few terms that patients are often confused by. As a primer, I thought we could start by defining some of these terms. First, what is genetic or molecular testing?

Dr. Woyach:               

So, all cancer cells will have a collection of mutations or abnormalities in the DNA that either make the cell a cancer cell or make it behave in a certain way. And so, these mutations are referred to as the genetic abnormalities of the CLL cells. So, when we talk about genetic testing in CLL, we use it to mean a number of things. We can use it to look specifically for types of mutations so types of genetic abnormalities.

We also sometimes use that as a kind of catch all term like genetic or molecular testing also to refer to looking at changes in the chromosomes inside of a CLL cell. That’s also called cytogenetic testing. And then, we also use a number of tests in CLL where we look at specific, not necessarily abnormalities, but just changes in the cell that can indicate a certain type of behavior.

Katherine:                  

How is this different from genomic testing?

Dr. Woyach:               

So, genetic and genomic testing, I think, are usually used interchangeably. But sometimes, we use them in different contexts but they really mean the same thing in this case.

Katherine:                  

Okay. And what is a chromosome change?

Dr. Woyach:               

So, as you might remember from biology class maybe a long time ago, as it was for me, inside a cell, so a normal cell or a cancer cell, you have the nucleus, which holds the DNA.

And the DNA is organized into chromosomes. And so, when a cell goes through division, it takes those chromosomes, copies them and then, breaks them apart into two different cells. So, changes can happen in the level of the DNA itself. So, a mutation where one base is changed to something different. So, that would be just like a single nucleotide change. And that’s something you’re not going to see as a change to a chromosome. Another thing that can happen in CLL and in other cancers, too, is that during that process of cell division, an entire chromosome could be duplicated. It could be absent.

More commonly, parts of chromosomes can change. This is all because cancer cells just do a very poor job of editing their division.

An in normal cells, there are multiple steps along the way from the process of copying the genes to copying the chromosomes to doing the division. And every step along the way, if something happens incorrectly, which happens a lot, the cell usually just dies. But a cancer cell is not going to do that because it has so many signals that keep telling it to stay alive that it can tolerate a lot of different abnormalities. And so, you end up with cells that are just very different from what you would see normally.

Katherine:                  

All right. Well, that’s a great way for us to start. Let’s go into the discussion of the relationship between testing and CLL. How is testing administered?

Dr. Woyach:               

So, almost all testing, in terms of molecular genomic testing in CLL, can be done on a blood sample. So, that’s one important thing.

The CLL guidelines recommend that testing for certain prognostic factors be done before the administration of therapy. So, at the very least, before somebody starts treatment, they should have these tests performed. In my practice and I think most CLL specialists find it really helpful to do these tests, not necessarily just at the time of treatment but really at the time of diagnosis or the time we first see the patient because CLL is a very heterogenous disease, which means that it behaves very differently in different people. So, there are some people that are diagnosed and will go 10 or 20 years before they need any treatment.

And many don’t need treatment at all. Whereas other people are very likely to need treatment within the first few years after diagnosis. Some of the genetic tests that we do can help counsel patients on where they’re likely to fall in that spectrum.

And so, I think that’s helpful for people to know early on in the disease course. But really, the tests can be performed at any time before treatment

Katherine:                  

Have there been advances in testing?

Dr. Woyach:               

Absolutely. I think in every cancer, we’ve learned so much more about the biology of the disease, specific mutations that cause specific behaviors of cells, and really much more in CLL about the common genetic changes and what those means to response to therapy.

Katherine:                  

The goal of this program, Dr. Woyach, is to provide the confidence and tools for patients to advocate for the essential tests to get the best care personalized to them. Are there specific tests that patients should make sure they have?

Dr. Woyach:               

Yeah. In CLL, I would say there are three that are very, very important before starting treatment. The first is something called the IGHV mutational status.

What that is defined as is the changes in the variable region of the immunoglobulin heavy chain. That’s a big mouthful that doesn’t mean a lot to most people. So, I’ll give you just a little background on what that really means biologically and then, what that means clinically. So, every B lymphocyte, so a normal B lymphocyte and a CLL cell, has receptors on the surface of the cell that allow it to interact with the environment. And in a normal B lymphocyte, this is really important for the immune system. So, bacteria, virus, something is in the body and the B cell surface receptor is going to be able to recognize that that’s not supposed to be there and then, do something about it.

In CLL, the surface receptors don’t do a lot of interacting with the outside environment but they’re still present there. And in a normal B cell development, the B cells are initially formed in the bone marrow.

And at the time that they’re formed, every one of those receptors is exactly the same. So, we can do DNA sequencing on those receptors and you’ll see that every one is identical. So, during a normal development of a B cell, it undergoes this process that’s called somatic hypermutation, which is where those receptors mutate or change. And that’s important because then, they can recognize different things. And so, you end up with this whole repertoire of thousands or millions of B cells that all are a little bit different and can recognize something different.

So, CLL cells, they’re all clonally related to each other. They’re all going to have the same receptor on their surface. And about 60% of the time that receptor is different than the newly born B cells. And so, this is probably a little bit more simplistic than it actually is. But the way we think about that is that those B cells or those CLL cells, which we call mutated because they underwent that mutational process, we think that that means that they come from a more mature initiating cell.

And they tend to be less aggressive, more slow growing. The other 40% of patients, if you look at the receptor on their surface, it’s exactly the same as the new B cells in the bone marrow. And we call those IGHV unmutated because they haven’t done that mutational process. And they behave very differently. So, in mutated CLL, only about half of people will ever need therapy in their lives. An average time from diagnosis to first treatment is about 10 years. In contrast to those patients who have unmutated IGHV, basically, all of those people will need therapy at some point in their lives. And average time from diagnosis to first treatment is about three years.

So, you can see how it really breaks people up into two very different categories of disease.

So, that’s the first test and one that’s really important. That’s also one that doesn’t change during the course of the disease. So, if somebody is diagnosed with mutated CLL, it’s always mutated. So, the next marker that’s important is, actually, chromosome changes. So, we know that there are a few different recurrent chromosome abnormalities in CLL that are common and important prognostically. So, one of these is a deletion of part of chromosome 13. It’s called a 13q deletion. It indicates, again, very slow growing CLL. Patients how have normal chromosomes also are very good disease biology.

Some people have an extra copy of chromosome 12. That’s called trisomy 12 and that’s an intermediate marker. And then, there are two markers that are associated with a little bit more aggressive CLL. One is a deletion of proto chromosome 11. That’s called an 11q deletion.

And the other one is a deletion of proto chromosome 17 called a 17p deletion. These are all abnormalities that are important to test for. And the way that we test for these is something called FISH testing. And FISH stands for fluorescence in situ hybridization. And it’s a way to use an antibody to look for specific abnormalities in the CLL cells. So, that’s important. And another thing that can be done at specialized centers is something called stimulated cytogenetics. So, I mentioned to you with FISH testing, we’re looking for specific abnormalities with antibodies. But the things that we don’t test for we’re not going to see.

So, if they have a chromosome change that we don’t have an antibody looking at, we’ll never detect it. And we know that patients with CLL who have what’s called a complex karyotype, which is three or more chromosome abnormalities, they also have more aggressive disease.

So, like I said, at specialized centers, we can do what’s called a stimulated karyotype, which is where we look at all of the chromosomes. So, that’s FISH testing and karyotype. And then, the last thing is, actually, doing DNA sequencing for a specific mutation called a TP53 mutation. And TP53 is an important tumor suppressor protein. And it is mutated quite commonly in CLL. About eight to ten percent of patients at the time of first treatment and, actually, up to about forty percent of people later on in the course of the disease. Most of the time, we see TP53 mutations occur at the same time as 17p deletions. About 80% of the time, those occur together but they can occur on their own.

So, that’s the third test that’s often helpful, especially prior to starting treatment.

Katherine:                  

Do patients need to be retested over time?

Dr. Woyach:               

Yeah. So, for the TP53 mutation and for FISH, it’s important to test for those before each line of therapy. Because those are so important in indicating disease biology and, specifically, with the 17p deletion and TP53 mutation, those indicate patients that are likely to not have as good of a response to treatment. It’s always important to check for those prior to therapy.

Katherine:                  

We have a patient question. I have 17p deletion. Should I be worried?

Dr. Woyach:               

So, 17p deletion is usually associated with more aggressive disease biology almost always associated with that unmutated IGHV. The reason I bring that up is there are a very small subset of patients who have 17p deletion and mutated IGHV who, actually, have pretty indolent or slow growing disease.

People who don’t, which is the majority of them with 17p deletion, do have a shortened time to treatment and shortened survival with most of our current therapies. There have been a lot of advances though in the treatment of 17p deleted CLL. And may of our newer therapies can very much prolong the remission time in the lives of patients with 17p deletion.

Katherine:                  

Dr. Woyach, how do these chromosomal changes affect disease progression and prognosis?

Dr. Woyach:               

So, the markers that are associated with more aggressive disease biology usually are going to be associated with people that need treatment within the first few years after diagnosis, especially those people who have 17p deletion, 11q deletion, unmutated IGHV.

Katherine:                  

What exactly are prognostic factors? Would you define that?

Dr. Woyach:               

Sure. Prognostic factors, and I mentioned three of them, the IGHV, FISH, and the TP53 mutation, are ones that have been studied extensively and shown that the presence of this marker or some change in this marker is associated with a change in the biology of the disease or in the response to therapy.

Katherine:                  

How does the identification of these changes or mutations affect treatment options?

Dr. Woyach:               

Well, right now, we’re lucky in CLL because we have a lot of treatment options. I would say the most important changes when we’re talking about somebody with CLL that is about to start their first treatment is the decision of whether chemotherapy is ever appropriate. So, almost everybody with CLL now is treated exclusively with targeted therapies.

So, nonchemotherapeutic options. There are some people who are young, and in CLL terms that means under the age of 65, who have mutated IGHV and who otherwise have good genetic list disease. So, normal chromosomes of the 13q deletion, no TP53 mutation. That small subset of patients, actually, has the potential to be cured with a specific type of chemotherapy. It’s called FCR or fludarabine, cyclophosphamide, rituximab. So, for those young, healthy patients, it’s really important to know those risk factors to know if they are in that group that has that potential for cure.

The converse to that is if patients don’t fall in that group, they probably shouldn’t receive chemotherapy as their first treatment because it’s not as effective as our other therapies.

Katherine:                  

Yeah. It makes sense.

Dr. Woyach:               

And then, even in the future with first and other treatments with novel therapies, we know that patients with 17p deletion and TP53 mutation tend to have a shorter response time. And so, what I use that for in my practice is I know that those are people that I really have to be sure that we’re following them closely, taking any signs of progression seriously, and always have a back up plan for what we’re going to do if this treatment doesn’t work.

Katherine:                  

We have another question from a patient who wants to know if their children will inherit CLL. Is there any link between inherited mutations and CLL?

Dr. Woyach:               

That’s a very, very common and really important question. I would say of the hematologic cancers, CLL is one with higher linkage in families, which means that people with CLL are more likely to have another family member with CLL though it’s still not very common.

And it’s very different from breast cancer or the solid tumors where we know that these specific mutations indicate families that are going to have risk of disease. There has actually been a lot of study over the years of families that tend to have multiple people with CLL. Unfortunately, there really have not been genes identified that are the reason for those family linkages. I think there has been only one family that I know of where they’ve actually found a gene that was likely the cause of multiple family members’ illnesses. So, yeah, there is no indication to test family members.

I tell people do not worry that you’re going to pass this to your children or your grandchildren. CLL is not something that we should be using as like a marker of whether you should have kids or should have anything like that.

So, maybe a little more likely in family members but not enough to really be worried about that.

Katherine:                  

What are the differences or difference between inherited and acquired genetic mutations?

Dr. Woyach:               

So, inherited mutations are those that you get from your parents. And there are lots of inherited mutations that, actually, can predispose to cancer. Specifically, I mentioned the TP53 mutation and CLL cells. Well, there are also people who inherit a TP53  mutation have risk factors for multiple cancers. And CLL, specifically, every mutation that we talk about is an acquired mutation. So, that’s also known as a somatic mutation. So, they’re mutations in the cancer cells. But if you did DNA sequencing of the normal cells, they would not be there.

Katherine:                  

We have a question from a patient. If I have FCR, does that rule out me using a targeted therapy later on?

Dr. Woyach:               

Absolutely not. And, actually, all of the studies of the targeted therapies, all of the early studies were done in people who previously had had chemotherapy. Most of them had received FCR. So, certainly, receiving chemotherapy doesn’t mean that you can’t get a targeted therapy later on.

Katherine:                  

What are other factors that are important to consider when deciding on a treatment route?

Dr. Woyach:               

So, besides the genetic factors we talked about, other things are age and very closely related to age is fitness status. So, how active is somebody? How able are they to do all of their normal activities? Are there other health problems that we need to be concerned about when thinking of treatment?

As well, certain medications can influence treatment choices, specifically, with oral therapies where there might be drug interactions. And then, also a lot of the decision of frontline therapy is patient preference right now. So, do people prefer to have a time limited therapy? Do they prefer to have an indefinite therapy? Do they prefer an all p.o. regimen or a mix of p.o. and IV? So, there are definitely a lot of considerations when thinking about frontline treatment.

Katherine:                  

Dr. Woyach, what do you feel is the patient’s role in this conversation about treatment approaches?

Dr. Woyach:               

I think that, obviously, the patient is the most important part of the talk of treatment indications. Like I mentioned, sometimes we have the discussion of chemotherapy versus a targeted therapy. More often, the discussion is we have three approved frontline CLL therapies right now. We have two BTK inhibitors or Bruton’s tyrosine kinase inhibitors, ibrutinib, acalabrutinib.

And then, we have a BCL-2, venetoclax, that’s given in combination with an antibody called obinutuzumab. These are very different treatments in terms of side effects, [inaudible] [00:28:13] how they’re administered, how often they’re administered, just as an example. The BTK inhibitors are pills. And they’re meant to be given indefinitely. So, you start them with plans that you’re not going to stop them, unless the patient doesn’t tolerate them or they stop working. And so, with that type of regimen, you have the kind of burden of being on treatment for a long period of time.

But on the flipside, it’s very easy to start treatment. So, if you decide you want a BTK inhibitor, I write a prescription for it, it comes to your house, you start it. I usually see patients monthly for the first six months and then, we go to every three months. It’s very easy to start treatment.

The other type of treatment, the Venetoclax plus with the obinutuzumab regimen, that’s the BCL-2 inhibitor with an antibody, it’s a finite therapy. So, people are treated for a year and then, they go off treatment. The flipside of that is they’re a lot more time intensive in the beginning. So, you have the IV therapy with the obinutuzumab. Venetoclax you, actually, have to ramp up the dose so patients have to come in weekly for the first five weeks and they have to come in monthly for their infusions. So, it’s much more time intensive upfront but then, you get to stop treatment. And so, those are considerations that I can’t answer for somebody.

I don’t know which one people would prefer and people prefer different things. So, we spend a lot of time talking about all of the different scenarios and what’s going to make the therapy work best for the patient.

Katherine:                  

How can patients stay informed about CLL?

Dr. Woyach:               

There is a lot of good information about CLL that’s available online through The Leukemia & Lymphoma Society.

They have a number of resources for lots of different cancers, including CLL. There are a number of different patient centered websites. One is called the CLL Society. There are others that are heavily moderated, provide a lot of good information, and tend to stay on topic with CLL current developments and don’t get into the weeds too much I would say.

Katherine:                  

If there are side effects, what would some of the side effects be for these targeted therapies?

Dr. Woyach:               

So, it depends on the drug. So, BTK inhibitors, specifically, ibrutinib can cause some joint and muscle pain, some rashes, diarrhea, heart burn. Those are things that tend to, if they’re going to happen, usually happen earlier on in treatment and tend to get better over time. It can also cause high blood pressure. It can cause an abnormal heart rhythm called atrial fibrillation.

So, those are things we watch out for with ibrutinib. Acalabrutinib really has all of the same side effects but for many of them, they don’t occur as often. And then, the tradeoff there is ibrutinib is given once a day and acalabrutinib is given twice a day. With venetoclax plus obinutuzumab with that regimen, you get a lot more hematologic toxicity. So, you see more lowering of the good white blood cell count, which is, obviously, a risk for infections. That regimen comes with a risk of something called tumor lysis syndrome, which is where the cells can break down too quickly and cause damage to the kidneys, damage to the heart.

It can also cause some GI disturbance like some diarrhea, nausea, abdominal pain, things like that. I see there are a lot of side effects. And, of course, when I’m talking to a patient about treatment, we go over them in more detail than that. But I think the important thing is with all of these therapies, we do have ways to manage these side effects.

One thing I think is important for patients to remember is your doctor doesn’t know you’re having side effects unless you tell them. So, we know that people have these side effects. But if you don’t tell us that you’re having diarrhea or heart burn or things like that, we can’t help with it. And we have a lot of medicines that can help these things.

Katherine:                  

That’s a good point. Are there emerging treatments patients should know about?

Dr. Woyach:               

Yeah. There are a lot of really exciting things going on in CLL right now. And CLL is a disease that has been completely transformed in the last five to ten years and is poised to do so again. So, I mentioned these therapies that we use for frontline treatment and there are clinical trials now combining them together. So, these agents work so well on their own. Are they going to be even better if we add them together?

There are also newer target therapies, different targets that we are finding increasingly important in CLL, as well as a modality called CAR-T cells, which most people have heard of where we take patients’ own T cells, modify them in the lab and then, give them back with a goal of getting those cells engineered to kill CLL cells.

These are all things that are not ready for prime time in CLL yet but are available in clinical trials. And I think one other thing I’d really like to put a plug in for is clinical trials in CLL because right now, we’re at a point where our therapies are really very good. But if people just do those treatments, we are never going to figure out which one is the best or figure out, for specific types of patients, which treatment is the best. And so, I advocate that any of my patients that are eligible for clinical trials should consider them because that’s how we make progress in the disease from an altruistic sense.

That’s how we make things better for everybody. That’s one way a patient can think about it. But more personally than that, being in a clinical trial gives somebody the opportunity to get a treatment that they otherwise wouldn’t get that might be better than our standard of care therapies.

Katherine:                  

Dr. Woyach, as a researcher in the field, why are you hopeful?

Dr. Woyach:               

I am so hopeful in CLL because there is so much that we’re learning every day about the biology of the disease, about specific mutations and other genetic factors that are important and really can be targeted by new drugs. Paralleling our understanding of the disease, there also are many more techniques to make these targeted therapies that kill cancer cells selectively while sparing normal cells and making our drugs even more tolerable.

And I think both the targeted therapies like this and the potential of combining them, figuring out sequences that are best but then, also these newer modalities where we, actually, get the immune system involved like the CAR-T cells. They’re making CAR NK cells now. And just lots of other strategies that could be used together with targeted therapies to, hopefully, cure the disease.

Katherine:                  

Thank you for taking the time to join us today and sharing all of this information with the patients. We appreciate it.

Dr. Woyach:               

Of course. It’s my pleasure.

Katherine:                  

Please take a moment to fill out our survey. It helps us as we plan upcoming programs. 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.

Telemedicine Challenges and Opportunities for CLL Patients

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Telemedicine Challenges and Opportunities for CLL Patients from Patient Empowerment Network on Vimeo.

For chronic lymphocytic leukemia patients, some challenges have emerged with care via telemedicine. In this telemEDucation program, CLL expert Dr. John Pagel explains opportunities for patients and providers to optimize these visits.

See More From the CLL TelemEDucation Empowerment Resource Center

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What CLL Population Will Benefit Most From Telemedicine?

How Will Telemedicine Impact Time-Limited Therapy in CLL?

Will Telemedicine Be Part of Routine Management for CLL?
 

Transcript:

 Stephanie: 
Let’s highlight both the challenges and opportunities that come with telemedicine. So first, it does seem to be reshaping the traditional CLL doctor-patient relationship to some extent, and you’ve touched on this. So with your experience as a CLL expert, what are the limitations of telemedicine?

Dr. John Pagel: 
Well, one of the, of course, things about telemedicine is it’s not just figuring out how to do it from the provider’s standpoint, but it’s also figuring out how to do it from the patient’s standpoint. So we can’t expect, to be honest, that this goes just like it would if you were in the clinic, sitting on the exam table with your physician there at the computer right next to you in that exam room, it shouldn’t be expected that it’s going to go like that. And unfortunately, to this point, we’re trying to figure out that. It doesn’t do that. And so that takes some alteration in our approach, on the provider’s side and on the patient’s side as well – and in particular, what the expectations are for these patients and for the providers.

So it needs to be very focused, and it needs to be concise. So what is my message there? For the patient’s side, know that the doctor’s busy, they’re doing their work all day long with lots of sick people potentially, and so they need to be very focused on what the issues are and the direction of the conversation. So come prepared to a telemedicine visit, if you’re a patient. Come prepared to know what you want to talk about and what the focus is with the priorities that you might have that are issues for you around your CLL disease. And the provider will do that hopefully as well. It’s a learning thing. But I will tell you, the first time will take a little bit of learning. By the second, third time that you’re actually interacting with your doctor, that same one-on-one relationship, it really

Will Telemedicine Mitigate Financial Toxicity for CLL Patients?

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Will Telemedicine Mitigate Financial Toxicity for CLL Patients? from Patient Empowerment Network on Vimeo.

The cost of chronic lymphocytic leukemia (CLL) care can be inappropriately high for some patients. Watch as CLL expert Dr. John Pagel details how telemedicine can affect the high cost of care.

See More From the CLL TelemEDucation Empowerment Resource Center

Related Resources:

 

What CLL Population Will Benefit Most From Telemedicine?

How Will Telemedicine Impact Time-Limited Therapy in CLL?

Will Telemedicine Be Part of Routine Management for CLL?
 

Transcript:

Stephanie: 
Dr. Pagel, we know the stresses of paying for cancer treatment. So how can maybe telemedicine help to mitigate financial toxicity for these countless CLL patients and their families?

Dr. John Pagel: 
Well, this is an important part of medicine in general, and it’s certainly relevant, of course to the CLL patients. The cost of care is inappropriately high, not just the pharmaceutical agents, but, of course, the visits. So there are evolving ways of figuring out how reimbursement will happen for physicians and how payments happen on the side of patients. We’re still not completely clear on that, but likely what will happen, over time, is that we will be doing less and less unnecessary tests. And with less unnecessary tests, the cost of care will go down for the individual specific community and patients. It’ll be very important for us to figure out what we really need to be doing and what we don’t, and telemedicine’s going to help us figure that out. 

Is Remote Monitoring for CLL Patients on CAR T Therapy the Future?

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Is Remote Monitoring for CLL Patients on CAR T Therapy the Future? from Patient Empowerment Network on Vimeo.

Will telemedicine play a greater role in CAR T remote monitoring and help some CLL patients avoid long hospital stays? Learn how harnessing technology could optimize care for CAR T patients.

See More From the CLL TelemEDucation Empowerment Resource Center

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What CLL Population Will Benefit Most From Telemedicine?

How Will Telemedicine Impact Time-Limited Therapy in CLL?

Will Telemedicine Be Part of Routine Management for CLL?
 

Transcript:

Stephanie: 

There’s excitement around telemedicine and CAR T, so specifically remotely monitoring CAR T to help avoid patients having to deal with long hospital stays. Is this the future?

Dr. John Pagel: 

It’s clearly the future. So what you’re alluding to, of course, is a way that we are now doing to trick a patient’s own immune system cells into targeting and fighting the cancer, and of course, we’re talking about CLL here. It’s a revolutionary treatment in CLL, we still have quite a ways to go, we are doing a lot of important trials and advancing the field, but we don’t have an approved approach in CLL yet, but we will. No doubt. And the goal of that therapy is not just to eradicate the disease and keep it from coming back, but it’s also to do it in a very safe and actually appropriate way, and that’s as an outpatient.

Those patients clearly have risk for an adverse event or a side effect, that can be problematic. So they have to be in close contact with a physician and sometimes they’re required to be very close to the treating center for prolonged periods of time. Most of the time that’s very uneventful. So it’s a major disruption to a patient’s life. You could imagine that you’re traveling hundreds of miles to go to a center, and not just go to a center that provides the CAR T-cell therapy, but is actually monitoring you for a month or more, so you’re away from home for a long time, living in a hotel, that’s a problem.

Telemedicine is a way to get around that. We will evolve to being able to treat patients, get them home, and then telemedicine will work where the visits can be done in a very expeditious manner, and again, in a very appropriate way so that that will also reduce the interactions away from home, and as we said cost of care as well. 

Which CLL Treatment Approach Could be Right for You?

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Which CLL Treatment Approach Could be Right for You? from Patient Empowerment Network on Vimeo.

Which CLL treatment approach might be best for your individual disease? This animated video walks through important considerations that help guide treatment decisions, including genetic testing results, lifestyle factors and patient preference. 

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CLL Treatment Decisions: What Path is Best for YOU?

  How to Be A Partner in Your CLL Care  Key CLL Treatment Decision-Making Factors

Transcript:

Hi, I’m Christy. I’m a nurse practitioner and I specialize in chronic lymphocytic leukemia, or CLL. With a variety of available treatment options, CLL patients often wonder which approach might be best for their individual disease.

Before we walk through the information that goes into choosing a treatment approach, I want to remind you that this video is intended to help educate CLL patients and their loved ones and shouldn’t be a replacement for advice from your doctor.

So, how is a treatment path determined?

CLL physicians will typically consider several key factors to help guide the decision.

When many CLL patients are first diagnosed, their medical team may use an approach called “watch and wait” or “active surveillance.” This means that treatment won’t begin immediately. Their healthcare team will monitor their CLL via in-person visits and lab testing. And, some patients may never even need treatment, depending on their individual situation.

But, if bloodwork indicates advanced disease, enlarged, bothersome lymph nodes develop, or, if symptoms like fatigue and night sweats are negatively affecting a patient’s daily life, then it may be time to treat the CLL.

Physicians typically consider a patient’s age, overall health, and existing conditions before they suggest an approach. There are also several tests on the CLL cells that may help guide treatment decisions.

Physicians use immune globulin heavy chain gene, also known as IGHV, mutational analysis to determine whether a patient is IGHV mutated or unmutated.

In IGHV mutation analysis testing, being “mutated” is a favorable finding. 

If a patient’s IGHV status is mutated, and, depending on other factors such as age and overall health, the physician may recommend a treatment called FCR. FCR stands for the drugs used in this approach, which are two chemotherapy drugs combined with a targeted treatment that is a monoclonal antibody.  

However, it is important to realize that due to side effects and other risks, chemotherapy is not for everybody. Non-chemotherapy treatments work very well for IGHV mutated patients as well as unmutated patients.

If a patient has unmutated IGHV, then a targeted treatment or a clinical trial might be more effective.

Molecular testing, also known as genetic testing, can identify specific genes, proteins, chromosome changes, and other factors unique to your CLL.

The results can provide your healthcare team with information related to prognosis, risk and which therapy may be most effective in treating your disease.  

One of the most widely used tests is call a FISH test and it looks for specific changes in the chromosomes of your CLL cells.  These specific changes can help understand how well certain treatments are likely to work for you. 

For example, patients with the chromosome abnormality “17p deletion” may have higher-risk disease and will not respond well to chemotherapies such as FCR. An oral targeted treatment approach or a clinical trial will be more effective in patients with 17p deletion.

There are several types of targeted treatments that are currently approved to treat CLL including:

  • Monoclonal Antibodies, which work by targeting specific proteins on cancer cells.
  • And, Kinase Inhibitors, which work by blocking proteins that tell the cancer cell to grow and survive.
  • A combination of treatment approaches may also be considered.

Before you start any treatment, it’s essential to ask your doctor if you have had relevant CLL genetic testing, including FISH testing, and what the results could mean for you.

Finally, one of the most important factors that your healthcare team will consider is YOUR treatment goals. 

It’s very important to consider a treatment’s course and potential side effects.

With the many options available today to treat CLL, you will be able to get effective treatment. How your treatment choice affects your other health conditions and your lifestyle is essential.

Remember, you are a partner in your care and have an active voice in finding the best treatment for you.

When treatment is discussed may be a good time to consider a second opinion or a consult with a specialist.  If you don’t feel supported or an active member of your team, then it is always best to get another opinion if you are able.

So, how can you put this information to work for you and help improve your care?

  • Talk to your physician about what you’ve learned.
  • Ask about testing mentioned in this video and whether you need to be retested over time.
  • Discuss clinical trials with your physician.
  • Visit credible resources to stay up to date on CLL information.

Visit powerfulpatients.org/cll to learn more about CLL.

What Subset of CLL Patients Should Utilize Telemedicine?

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What Subset of CLL Patients Should Utilize Telemedicine? from Patient Empowerment Network on Vimeo.

With monitoring of chronic lymphocytic leukemia (CLL), there is a subset of patients that will get the most benefit from telemedicine visits. Learn more about which CLL patients should use telemedicine and which higher risk patients should still visit in-person. 

See More From the CLL TelemEDucation Empowerment Resource Center

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What CLL Population Will Benefit Most From Telemedicine?

How Will Telemedicine Impact Time-Limited Therapy in CLL?

Will Telemedicine Be Part of Routine Management for CLL?
 

Transcript:

Stephanie Chuang: 

Can you share the telemedicine platforms that you, in your practice, use and maybe so far, what are some of the best practices observed?

Dr. John Pagel: 

Right, and I think that’s probably the biggest key and takeaway that we can talk about here for the audience, is to remember that telemedicine isn’t going to be appropriate for every patient. And for each individual patient, there are times where it certainly would be very appropriate and other times where it might not be. So, you know, of course, people that have active, growing, rapidly progressing disease, we’re not talking about those people, those people need to be seen by their provider, they need, of course, close attention and monitoring. But many, many patients, in fact, the majority of patients with CLL are not in that kind of group.

So we’re talking about people that don’t have high-risk genetic features, in particular, those are things like a deletion of the short arm of chromosome 17, that’s a 17p deletion, or an 11q deletion or a TP53 aberration, those are genetic risks that your doctor will know about with regard to your specific individual CLL. And most people, fortunately don’t have those features and they behave in a very indolent, slow growing, more benign-like fashion, and then those are the people where probably telemedicine would be appropriate for many visits.

I’ll just say, I would suggest that in general, telemedicine shouldn’t be something that you do with every single visit. Every once in a while, you should have that face-to-face, hands-on interaction with your primary provider. But I’ll also remind people that not everyone lives real close to their oncologist or even their CLL expert. So if you’re far away, you can connect not just with your oncologist who takes care of you, but with an expert who might be some distance away, and that’s the beauty I hear about the telemedicine.

Will Telemedicine Be Part of Routine Management for CLL?

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Will Telemedicine Be Part of Routine Management for CLL? from Patient Empowerment Network on Vimeo.

With the COVID-19 health crisis, telemedicine has emerged as part of routine healthcare. Watch as CLL expert Dr. John Pagel gives his viewpoint on how telemedicine will be included in routine management of CLL. 

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What CLL Population Will Benefit Most From Telemedicine?

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What Subset of CLL Patients Should Utilize Telemedicine?
 

Transcript:

Stephanie: 

You know, of course, COVID-19 has forced healthcare providers to use telemedicine more than ever before, so do you think this will definitely continue on past COVID-19? And if so, how quickly it will even grow?

Dr. John Pagel: 

Well, I think the federal government’s understanding that this is a part of medicine moving forward that’s important for patients, patients like it, and I don’t blame them. If I’m on that side of care, I feel perfectly fine, I have CLL, let’s say, and nothing’s going on with me, and I’m very well-educated about my disease, and by the way, that’s probably critically important to this whole conversation is to understand and be educated well about your specific disease.

Remember, each patient has to be their own best advocate. And that makes telemedicine work. And frankly, the horse is out of the barn, in my opinion, telemedicine is where we’re going, and it’s not going to come back. Patients like it, physicians are getting used to it, Stephanie, it’s something that we are reluctantly in some ways adopting, but it’s just how it is, and I think it’s going to be a major important thing for many, many CLL patients as routine management. 

How Will Telemedicine Impact Time-Limited Therapy in CLL?

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How Will Telemedicine Impact Time-Limited Therapy in CLL? from Patient Empowerment Network on Vimeo.

With chronic lymphocytic leukemia time-limited therapy, treatment is delivered for a pre-determined period of time and then is stopped after remission is achieved. Learn how telemedicine impacts patients on this type of treatment. 

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What CLL Population Will Benefit Most From Telemedicine?

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What Subset of CLL Patients Should Utilize Telemedicine?
 

Transcript:

Stephanie: 

Dr. Pagel, we’d love to ask about the time-limited therapy in CLL specifically, and how telemedicine might play a role in that?

 

Dr. John Pagel: 

Well, this is one of the things that we’re still learning about, Stephanie, and I think it’s going to evolve and change a bit over time, but we know that we need to do. Continually better for patients, of course, we need to meet unmet needs in CLL. And there are lots of unmet needs still in CLL, of course, one of them is curing the disease, and we’re not focusing on therapeutics today in our discussion about working towards that goal, but that does remain a major goal, and we’re working towards that. But really, of course, there are situations with unmet needs where people have been getting therapy continuously now for long, indefinite periods of time, and they may not need all that therapy. And so one of the things is that we’re learning about is what you mentioned time-limited therapy. So the idea of delivering therapy for some defined period of time, getting to a very good remission and then stopping therapy. And where telemedicine comes into play there, is that if they’re off of therapy and doing well, we don’t need to necessarily drag those patients back to the clinic and put them through, not only all of that exposure and that risk, but of course the anxiety that goes with it and everything else.

So again, I think that in those cases where we’re monitoring patients with telemedicine, it’s beautiful for time-limited therapy, and it also allows for us to stay even in closer contact with our patients who again, might have some difficulty getting into the clinic. 

What CLL Population Will Benefit Most From Telemedicine?

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What CLL Population Will Benefit Most From Telemedicine? from Patient Empowerment Network on Vimeo.

Among chronic lymphocytic leukemia patients (CLL), there are some that will benefit more from telemedicine visits that have become common practice during the coronavirus crisis. Watch as respected CLL expert Dr. John Pagel explains.

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How Will Telemedicine Impact Time-Limited Therapy in CLL?

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Transcript:

Stephanie: 
Now the pandemic has, of course, presented both challenges and opportunities for clinicians who are trying to manage diverse health conditions, and of course, we’re not just talking about COVID-19. So on the positive side, Dr. Pagel, what are the opportunities you see for CLL patients using telemedicine?

Dr. John Pagel: 
Well, you’re right, Stephanie, it isn’t just about COVID, but COVID has certainly changed the landscape of how we approach many patients in 2020 and now in the future moving forward and particularly with regards to telemedicine. And that’s particularly relevant to CLL patients in particular. CLL, remember is a chronic disease, it’s of course, part of the name chronic lymphocytic leukemia, and people will live with this disease for many, many years, perhaps even decades, and often not even be getting therapy but still have, of course, the disease.

And they need to be monitored, and they are commonly monitored with what we call active surveillance. And active surveillance is typically, as the audience well knows, periodic evaluations with physical examinations and perhaps even some laboratory blood work that’s done on an associated visit. And because of the need for those things over the last many years of how we follow people, with active surveillance, people. We have seen frequently in the clinic, and perhaps in some ways they’ve been seen when they perhaps could be evaluated and taken care of in a different way, and that’s where telemedicine comes in for select appropriate CLL patients. Where maybe we don’t need to bring them in to see their provider, they can get labs done perhaps locally at their primary care physician’s office, if the labs need to be done. And often the physical exam can be even done by video or — so by showing the provider what might be going on, and lots of times that physical exam may not even be important.

What do I mean by that? We’ll remember, there are lots of times where even if you have a lymph node or two around, we’re not going to actually institute or change treatment. So there’s a very unique important population of people with CLL who could obviously benefit from telemedicine moving forward. 

Key CLL Treatment Decision-Making Factors

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Key CLL Treatment Decision-Making Factors from Patient Empowerment Network on Vimeo. 

What should a patient consider when deciding on a chronic lymphocytic leukemia (CLL) treatment approach? Dr. Susan O’Brien, a Hematology-Oncology specialist, provides key factors that help guide treatment choices for patients with CLL.

Dr. Susan O’Brien is the Associate Director for Clinical Science, Chao Family Comprehensive Cancer Center.

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Transcript:

Katherine:

Dr. O’Brien, once it’s determined that it’s time to move forward with treatment, what do you take into consideration to help guide the treatment choice?

Dr. Susan O’Brien:     

Well, the good news and the bad news are kind of the same. The bad news is it’s a very complicated decision, but the good news is the reason it’s complicated is because we have a lot of good options. So, as I said, there are some people for whom chemotherapy would still be an option. One of the benefits of that is that it’s intravenous, i.e. there’s no copays for the patient. It’s administered over a finite period of time. Generally, six months.

And then, most patients will get several years of remission after that where they don’t have to be on any treatment. However, we now have what we call the small molecules or the targeted therapies and those come in two major categories. One is called BTK inhibitors. And there we have two drugs available in the same family, if you will. One is ibrutinib. One is acalabrutinib.

And then we have a different category of oral treatment where we only have one drug, which is a BCL-2 Inhibitor, which is Venetoclax. So, what these drugs do, they’re not chemotherapy, but they interfere with certain proteins in the CLL cell. And by doing that, cause the cell to die off.

Katherine:                  

Okay. What do you feel is the patient’s role in this decision?

Dr.Susan O’Brien:      

Well, I think the patient plays a key role, which they usually do when there’s options because then you have – you with your doctor have to make a choice. So, for example, we talked about chemotherapy is time limited and you generally will be done after six months in contrast, with the BTK inhibitors, those are given indefinitely. They’re pills but given indefinitely for several years.

With Venetoclax it’s given with an antibody, which is given intravenously but the Venetoclax can be stopped after 12 months. So, the side effect profiles are different also. So, we have to take into consideration the duration of the therapy as well as the side effect profiles in determining what might be best for that patient.

How Do You Know If Your CLL Treatment Is Working?

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How Do You Know If Your CLL Treatment is Working? from Patient Empowerment Network on Vimeo.

How do you know if a chronic lymphocytic leukemia (CLL) treatment approach is effective? Dr. Susan O’Brien, a Hematology-Oncology specialist, explains how CLL treatment response is monitored.

Dr. Susan O’Brien is the Associate Director for Clinical Science, Chao Family Comprehensive Cancer Center.

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Transcript:

Katherine:

But how is that treatment monitored to evaluate its effectiveness?

Dr. Susan O’Brien:

Well, generally the things we’re – the same things we’re look – the same things we’re looking at when we treat. Right? So, we’re looking at abnormal blood counts. We’re looking at enlarged lymph nodes or spleen. We have symptoms. So, those three things are looked at when the patient is on the therapy. Are the lymph nodes shrinking? Are the blood counts improving? Are their symptoms getting better?

So, the same way pretty much that we would follow a patient who’s not on a clinical trial is the way we follow them on a clinical trial. Now, if it’s a very new drug which has never been given to humans before, let’s say, those trials probably have more frequent surveillance than we might do with a drug that we are familiar with and know what to expect with it. So, sometimes the trials might have more surveillance, more visits, more tests.

But generally, if those tests or visits are required – are not considered standard of care, the companies pay for them. So, usually what’s billed to the insurance is only what we would do treating any CLL patient with an already available drug.

So, it doesn’t wind up costing the insurance or the patient any more to be on a clinical trial. And they might get actually – there is some data the patients on clinical trials get better care because they’re being monitored very carefully as part of the trial.

Should You Discuss a CLL Clinical Trial with Your Doctor?

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Should You Discuss a CLL Clinical Trial with Your Doctor? from Patient Empowerment Network on Vimeo.

Dr. Susan O’Brien, a Hematology-Oncology specialist, explains why patients with chronic lymphocytic leukemia (CLL) should consider a clinical trial and the role trials play in treatment and care.

Dr. Susan O’Brien is the Associate Director for Clinical Science, Chao Family Comprehensive Cancer Center.

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Transcript:

Katherine:

Dr. O’Brien, where do clinical trials fit in in all of this? Should patients discuss clinical trials with their physicians?

Dr. Susan O’Brien:

Absolutely. If we think of these great drugs that we have now, and I’ve mentioned ibrutinib, acalabrutinib, Venetoclax. Before those drugs were available, the only options were chemo. So, that means that people that went on the clinical trial, so let’s say with ibrutinib, have access to a really treatment changing revolutionary drug in CLL years before it was commercially available.

So, clinical trials can be a great way to have access to drugs or combinations. So, for example, right now there are some clinical trials looking at combinations of a BTK inhibitor and a BCL-2 inhibitor. So, the patient might say, “Well, why can’t you give me that combination, doctor?” “Well, technically I could.” If the drug is approved by the FDA, a physician can prescribe it really pretty much anywhere they see fit.

However, does insurance pay for it? That’s the trick. And these are very, very expensive drugs. And so, outside of an FDA approved combination, it probably wouldn’t – I wouldn’t be able to prescribe that combination because it wouldn’t get paid for and it would cost thousands and thousands of dollars. But on a clinical trial in general, the drugs are paid for.

Katherine:                  

Mm-hmm.

Dr. Susan O’Brien:     

And so, clinical trials are testing, for example, combinations now, which are not standard and there are some preliminary data from some of these trials that look really promising, i.e. two drugs may be better than one. There are also patients who, perhaps we’re talking about younger patients now, who have kind of worked their way through the available therapies. And so, they might not have a standard therapy that’s really gonna work for them. And for whatever reason they might not be a good candidate for stem cell transplant.

And so, innovative or totally novel drugs that we don’t have that class of drugs available at all are also being tested in clinical trials and allow people access to them. So, sometimes it’s – I think some people think of it as, well, a last resort if the drugs that are out there don’t work. But don’t think of it that way, because as I mentioned, these combination trials are for people who’ve never had prior therapy, but their disease has progressed enough to need treatment and could potentially offer, at least at a preliminary level, looks like a dynamite combination of drugs.

So, it’s not just for people who failed other drugs or whose disease has failed other drugs. That could be one group that is particularly important for, but even patients who’ve never had treatment, there may be clinical trials that they would be highly interested in participating. And again, it generally has a big financial benefit too, because remember oral drugs have copays for cancer patients.

Is It Time to Treat Your CLL? What You Need to Know

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Is It Time to Treat Your CLL? What You Need to Know from Patient Empowerment Network on Vimeo.

When it’s time to move forward with a chronic lymphocytic leukemia (CLL) treatment plan, what determines the best therapy for YOU? In this webinar, Dr. Susan O’Brien, reviews key decision-making factors, current CLL treatments and emerging research.

Dr. Susan O’Brien is the Associate Director for Clinical Science, Chao Family Comprehensive Cancer Center.

Download Program Resource Guide

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Transcript:

Katherine:                  

Hello and welcome to the webinar. I’m Katherine Banwell, your host for today’s program. Today we’ll discuss how you could work with your physician to find the best CLL treatment path for you. Joining me is Dr. Susan O’Brien. Welcome Dr. O’Brien. Would you please introduce yourself?

Dr. O’Brien:                

Sure. I’m Susan O’Brien. I’m the Associate Director for Clinical Sciences at the Chao Family Comprehensive Cancer Center in Orange, California.

Katherine:                  

Excellent. Thank you. And a note before we begin. This program is not a substitute for medical advice. Please refer to your healthcare team. Many CLL patients start in a period called watch and wait. Would you give us a brief overview of this approach?

Dr. O’Brien:                

Sure. The reason that we do watch and wait, or as some patients like to call it, watch and worry, is because many people present asymptomatically. So, for example, it’s very common that a patient might be found to have CLL because they go in for a routine physical and they have a slightly elevated lymphocyte count. So, many people have no symptoms at all. The average age of the disease is about 71.

So, people at the age of 71 often have what we call comorbidities. So, what does that mean? High blood pressure, high lipids, coronary artery disease. So, they also have a lot of comorbidities and even though right now we have great treatments for CLL that are generally well tolerated, all drugs do have side effects. So, if a person feels fine and the disease is not causing any problem in their life, why give them a treatment for it?

Particularly if we think that we don’t have a curative strategy. There may be a cure fraction for a small subset of patients with CLL who are young and have what we call a mutated immunoglobulin gene. But they’re a minority of most patients with CLL. So, what we want to do is keep people alive as long as we can with CLL until they likely die of other causes that people die of as they age. Heart disease, et cetera.

So, if they don’t need any treatment, we don’t want to expose them to the side effects. And some people, if you take all comers, everybody diagnosed with CLL, about a third of people will actually never need treatment for their disease. And so, that’s the idea behind it. That we’re sparing people side effects from treatments when they feel fine and their quality of life is perfectly good.

Katherine:                  

How do you decide when it’s time to treat?

Dr. O’Brien:                

So, it’s very variable because there are different indications from treatment in CLL. When I’m teaching my fellows, what I say to them is you basically treat the disease when it’s causing a problem. There are published guidelines, but they’re guidelines. They’re suggestions about when you might need to treat. But we take into account a number of different things. And in two different people the indications for treatment could be completely different. So, let me give you two examples.

 We could have a patient where they have big lymph nodes maybe in their neck, under their arms, in the groin, in the abdomen. And those nodes are getting bigger and bulkier to the point where they’re really problematic. That could be an indication for treatment. Other people might have very small lymph nodes but have very abnormal blood counts. So, their lymphocyte count could be really high. They could be starting to get anemic where their hemoglobin is dropping.

If you get too anemic, what’s going to happen? You’re gonna be symptomatic with fatigue and shortness of breath. So, we want to intervene not at a time when the disease is not causing any problems, but we also have to kind of find a happy medium. We don’t want to intervene – and wait until the patient is sort of bedridden and then start to do anything about the disease.

So, it’s a little bit of a judgement call. We also take into account the symptoms that the patient might be having. Like, are they having really terrible night sweats and fatigue that’s impacting their daily activities? So, we look at symptoms, we look at blood counts, and we look at lymph nodes or bulk of disease.

Katherine:                  

Where does genetic testing fit into the plan to treat?

Dr. O’Brien:                

There are certain tests that we definitely want to do before treatment. And some people have these tests done at diagnosis. So, the two main tests I would say are FISH, which just stands for fluorescence in situ hybridization, which is a fancy word for looking at chromosome abnormalities inside the CLL cell. The other thing we look at is the immunoglobulin mutation status. So, a patient’s immunoglobulin can be mutated or unmutated.

The immunoglobulin mutation status never changes. So, if a patient has had that test done once, they don’t have to have it repeated. However, the FISH, or the chromosome test, can change. So, it’s very important even if it was done at diagnosis that we repeat it at a time when a patient needs therapy. And why that’s so important is there is a particular chromosome abnormality called a 17p deletion where we know that those patients respond very poorly to chemotherapy.

And so, really should never receive chemotherapy and should receive a targeted therapy if that’s the case. There are other people that still could benefit potentially from chemotherapy, but not if they’re in that 17p deletion group.

Katherine:                  

All right. Dr. O’Brien, once it’s determined that it’s time to move forward with treatment, what do you take into consideration to help guide the treatment choice?

Dr. O’Brien:                

Well, the good news and the bad news are kind of the same. The bad news is it’s a very complicated decision, but the good news is the reason it’s complicated is because we have a lot of good options. So, as I said, there are some people for whom chemotherapy would still be an option. One of the benefits of that is that it’s intravenous, i.e. there’s no copays for the patient. It’s administered over a finite period of time. Generally, six months.

And then, most patients will get several years of remission after that where they don’t have to be on any treatment. However, we now have what we call the small molecules or the targeted therapies and those come in two major categories. One is called BTK inhibitors. And there we have two drugs available in the same family, if you will. One is ibrutinib. One is acalabrutinib

And then we have a different category of oral treatment where we only have one drug, which is a BCL-2 Inhibitor, which is Venetoclax. So, what these drugs do, they’re not chemotherapy, but they interfere with certain proteins in the CLL cell. And by doing that, cause the cell to die off.

Katherine:                  

Okay. What do you feel is the patient’s role in this decision?

Dr. O’Brien:                

Well, I think the patient plays a key role, which they usually do when there’s options because then you have – you with your doctor have to make a choice. So, for example, we talked about chemotherapy is time limited and you generally will be done after six months in contrast, with the BTK inhibitors, those are given indefinitely. They’re pills but given indefinitely for several years.

With Venetoclax it’s given with an antibody, which is given intravenously but the Venetoclax can be stopped after 12 months. So, the side effect profiles are different also. So, we have to take into consideration the duration of the therapy as well as the side effect profiles in determining what might be best for that patient.

Katherine:                  

Well, you talked about chemo and targeted therapies, but where – where’s stem cell treatment fit? Where does – where does stem cell treatment fit in and when is it considered?

Dr. O’Brien:                

So, stem cell treatment – if we’re talking about stem cell transplant, allergenic stem cell transplant is a transplant where you need a donor and you receive stem cells from the donor. And that can be a curative therapy, but it can also be associated with significant risks including risk of dying from the transplant. Because we have so many effective therapies nowadays, we’re generally not needing to use allogenic transplant.

And what I mean by that is if these targeted therapies don’t cure people, and the jury is still out on that I would say, if we can sequence them such that we get five years from one, six years from another, et cetera, we’re going to be able to keep the patient alive long enough until they die of something else. So, where the stem cell transplant comes in is generally much younger patients with CLL.

I mentioned the average age is 71, but we have – all of us int eh field have seen patients, for example, in their 30’s. Well, yes, a sequence of therapies might not get that patient to a normal lifespan, because they’re so young to start. So, really the consideration is pretty much reserved for younger patients where we might need a curative strategy that we might not have otherwise.

But for older patients, we probably have enough active drugs now. We have other categories of drugs that we can use if the disease reoccurs. So, we have enough categories of drugs that I think we can keep most people who are the average at CLL alive for quite a long time.

Katherine:                  

What about CAR-T therapy? Where do we stand on that with that research?

Dr. O’Brien:                

So, my answer is a little bit like allogenic stem cell transplant. CAR-T therapy is also associated with significant risks, but also significant benefit. Up until now, it’s pretty much been reserved because of the risks for patients who, to be frank, their disease has now kind of escaped everything. We don’t feel like we have great options that are similar and easier to use.

So, it can be effective, but it’s not something we do very early on because of the associated risks. If you take patients who go for CAR-T therapy, about 25 to 40% of them will wind up with some stay in the ICU. So, I’m really talking about some serious complications from these therapies.

It’s possible that as we learn how to minimize the toxicities of CAR-Ts, that they might become a more attractive strategy. And so, that could change with time. But the counterpoint to that is we’re having new drugs approved all the time for CLL. So, that gives us also more options before we would need to move to a CAR-T.

Katherine:

Dr. O’Brien, where do clinical trials fit in in all of this? Should patients discuss clinical trials with their physicians?

Dr. O’Brien:                

Absolutely. If we think of these great drugs that we have now, and I’ve mentioned ibrutinib, acalabrutinib, Venetoclax. Before those drugs were available, the only options were chemo. So, that means that people that went on the clinical trial, so let’s say with ibrutinib, have access to a really treatment changing revolutionary drug in CLL years before it was commercially available.

So, clinical trials can be a great way to have access to drugs or combinations. So, for example, right now there are some clinical trials looking at combinations of a BTK inhibitor and a BCL-2 inhibitor. So, the patient might say, “Well, why can’t you give me that combination, doctor?” “Well, technically I could.” If the drug is approved by the FDA, a physician can prescribe it really pretty much anywhere they see fit.

However, does insurance pay for it? That’s the trick. And these are very, very expensive drugs. And so, outside of an FDA approved combination, it probably wouldn’t – I wouldn’t be able to prescribe that combination because it wouldn’t get paid for and it would cost thousands and thousands of dollars. But on a clinical trial in general, the drugs are paid for.

Katherine:                  

Mm-hmm.

Dr. O’Brien:                

And so, clinical trials are testing, for example, combinations now, which are not standard and there are some preliminary data from some of these trials that look really promising, i.e. two drugs may be better than one. There are also patients who, perhaps we’re talking about younger patients now, who have kind of worked their way through the available therapies. And so, they might not have a standard therapy that’s really gonna work for them. And for whatever reason they might not be a good candidate for stem cell transplant.

And so, innovative or totally novel drugs that we don’t have that class of drugs available at all are also being tested in clinical trials and allow people access to them. So, sometimes it’s – I think some people think of it as, well, a last resort if the drugs that are out there don’t work. But don’t think of it that way, because as I mentioned, these combination trials are for people who’ve never had prior therapy, but their disease has progressed enough to need treatment and could potentially offer, at least at a preliminary level, looks like a dynamite combination of drugs.

So, it’s not just for people who failed other drugs or whose disease has failed other drugs. That could be one group that is particularly important for, but even patients who’ve never had treatment, there may be clinical trials that they would be highly interested in participating. And again, it generally has a big financial benefit too, because remember oral drugs have copays for cancer patients.

Katherine:                  

Right. But how is that treatment monitored to evaluate its effectiveness?

Dr. O’Brien:                

Well, generally the things we’re – the same things we’re look – the same things we’re looking at when we treat. Right? So, we’re looking at abnormal blood counts. We’re looking at enlarged lymph nodes or spleen. We have symptoms. So, those three things are looked at when the patient is on the therapy. Are the lymph nodes shrinking? Are the blood counts improving? Are their symptoms getting better?

So, the same way pretty much that we would follow a patient who’s not on a clinical trial is the way we follow them on a clinical trial. Now, if it’s a very new drug which has never been given to humans before, let’s say, those trials probably have more frequent surveillance than we might do with a drug that we are familiar with and know what to expect with it. So, sometimes the trials might have more surveillance, more visits, more tests.

But generally, if those tests or visits are required – are not considered standard of care, the companies pay for them. So, usually what’s billed to the insurance is only what we would do treating any CLL patient with an already available drug.

So, it doesn’t wind up costing the insurance or the patient any more to be on a clinical trial. And they might get actually – there is some data the patients on clinical trials get better care because they’re being monitored very carefully as part of the trial.

Katherine:                  

Let’s turn to patient self-advocacy. How can patients feel confident in speaking up and becoming a partner in their own care?

Dr. O’Brien:                

Yes, obviously for some people that’s going to be a lot harder than others. What I generally advice people is if you’re going in for your physician and you’re diagnosed with CLL, I would say this for any cancer because cancer is obviously a potentially life changing diagnosis, is you probably want to get an opinion with an expert. I would talk to my doctor first, ask them what their plan is so I know, and then see an expert in the field.

Then if the expert in the field says, “I think your doctor’s plan is great.” 1.) you’re now comfortable because you’ve got a second opinion, and 2.) that’s also a way, in my experience, to know if your doctor’s really gonna allow you to have an easy time participating. What I mean by that is that if your doctor is upset or finds it offensive, quite frankly you probably need a new doctor. That’s my take on that. Because that means they’re not going to be too open to your comments or you’re saying, “Well, I would prefer to do this.”

That’s just my quick take on how you can tell if it’s going to be easy or hard. But I think the relationship between the doctor and the patient is very important and you have to establish that relationship early on. If you go to a doctor who – where you start to ask questions and they’re in a hurry or they’re looking at their watch, you know that’s probably not the doctor that you want. I think most doctors realize that if they’re diagnosing a patient with a cancer, that’s going to be a pretty long clinic visit, because any patient is going to have a lot of questions to ask.

I also tell patients when you go to see a specialist or get a second opinion, bring somebody with you. It’s very well known that when patients have just been diagnosed with a cancer, they’re overwhelmed. Their emotional system is overwhelmed. Even if it’s “not a bad cancer”. Maybe early stage CLL. And that makes it very hard to process what a doctor is saying.

Particularly if they’re trying to give you quite a bit of information, which you need because you’ve just been diagnosed, and you need to know what to expect from the disease. So, having a friend or a spouse or a significant other there is really, really helpful.

Katherine:                  

Yeah. Yeah. That’s really good advice. Are there resources to help patients stay informed and educated?

Dr. O’Brien:             

Oh, yes. Our Leukemia and Lymphoma Society is great at that. Lymphoma Research Foundation were two of the big ones. And then there’s patient spots. CLL Society is a very well-known one run by a physician who’s also a CLL patient. I know him very well. And they have online support meetings now.

They used to have them in person, but now they have them online. And those can be really helpful because that allows a patient to talk to another patient who has their same disease. So, there are quite a lot of resources for patients nowadays. Especially in our technology enabled world.

Katherine:                  

That’s great. We have a couple of questions from patients. Patrick asks, “I’ve discussed a treatment plan with my doctor, but I’d like to get a second opinion. What are your thoughts on that?”

Dr. O’Brien:             

I think it’s a great idea. That’s exactly what I would do if I had a cancer. And again, I think Patrick made an important point that I’d like to emphasize. See what your doctor’s plan is first. Because then when you go to see the specialist or the second opinion, you can say, “This is what my doctor’s suggesting.”

And then if the specialist says, “Exactly what I would do.” But if you don’t know what your doctor is going to do – was suggesting to do when you go in to see the second opinion, it’s going to be really hard to make sure –put together that feeling of confidence that you’re on the right track.

Katherine:                  

Right. Right. To judge. A question from Julie. “How do you approach treating a relapse?”

Dr. O’Brien:

So, treating relapse we do the same thing that we do upfront. Namely “watch and wait”. So, for example, if a patient had a treatment on – let’s say they had some chemotherapy. And three or four years alter the lymphocyte count starts to go up, well, that technically would be indicating relapse.

But let’s say for the sake of discussion the person is asymptomatic, they feel fine, and their lymphocyte count is 20,000. Well, why do we need to do anything? So, in most cases we take the same approach of watch and wait when the disease comes back. And the first point at which it comes back is not always the time at which we need to initiate therapy.

Katherine:                  

Right. Right. Another question. Will is wondering, “If inhibitor treatments have to be taken forever?”

Dr. O’Brien:                

Well, it depend on the group – the class. So, for the BTK inhibitors, all the trials so far have given those drugs indefinitely. For the BCL-2 inhibitor, Venetoclax, there are time limited regimens both in the frontline setting and in relapse. But realistically, I have talked to my patients who are going on a BTK inhibitor who say to me, “Do I really have to be on this forever?”

And so, my answer is, “I don’t know what life is forever, so I would never use that word. We generally use the word indefinite.” But what I’ve said to those patients is, “If you’re on the drug for a while – and I’m not talking months. I’m talking say two, three years. And you’re in a really good remission and you think you want to stop treatment. I’m not necessarily opposed to that.”

Because if you’re in a very good remission, even if it’s not complete, but most people who are not in complete remission, meaning they still have a bit of disease left, have very little disease if they’ve been on the BTK inhibitors for a while. So, maybe only some enlarged lymph node on a CAT scan or a little bit of disease in the bone marrow.

But basically, most people after a couple years, they’re blood counts are normal, they feel fine, unless they’re having side effects from the drug and their physical exam is normal. So, I’ve told my patients if you want to go off, I expect you’d probably be off for even a couple years. And then we could always restart therapy potentially with that drug again or with one of the other drugs.

So, I think it’s important to let people know that they have options. But I will say that all of the clinical trials with the BTK inhibitors have given those drugs basically until the patient loses their response or there’s a toxicity where they just don’t want to take the drug anymore.

Katherine:                  

Mm-hmm. Mm-hmm. One last question from Jen. “What should be considered related to side effects when choosing a treatment plan?”

Dr. O’Brien:                

Well, the BTK inhibitors have some side effects. They can cause diarrhea, but that’s usually mild and self-limited. They can sometimes cause joint aches or arthrology. They – the two probably most serious side effects are atrial fibrillations, which is an irregular heart rate. But that generally is not frequent and tends to occur mainly in older men with heart disease.

Katherine:                  

Hmm.

Dr. O’Brien:                

They also are more likely – they impact the platelet function. So, they can more likely cause bleeding, but it’s typically minor bleeding like a bruise. Major bleeding is quite rare. In general, I’m outlining a lot of side effects, but remember not all side effects occur in everybody and there’s some people who don’t have any.

For the BCL-2 inhibitor, Venetoclax, one of the things we have to be very careful of when a person first goes on that and this would be particularly true if they have a very high lymphocyte count or a bulky lymph nodes, it that drug can cause something called tumor lysis. Tumor lysis, lysis is just a fancy word for breakdown, is where the disease responds so rapidly that their lymph nodes shrink very quickly. Lymphocyte comes down, which sound really good.

But what can happen is that breakdown of the cells can release potassium which can cause heart arrythmias. The cells can clog the kidneys and cause kidney failure. So, we have to be very careful about that when we start. And the way that drug is started is it comes with a starter pack actually to help make it easy where you go up, you start at a low dose, and go up weekly until we get to the target dose.

But we have to monitor very carefully during that escalation phase. The other thing that the Venetoclax can cause is neutropenia, meaning low neutrophil counts. What – that’s important because neutrophils are what we use to fight infection. So, if we get low neutrophil counts, the options are either to add a growth factor transiently, in other words a shot to – the subcutaneous injection that stimulates the bone marrow to release neutrophils. Or if it’s really a persistent problem, then we can go down on the dose of Venetoclax.

Katherine:                  

All right. How do you feel – how do you feel about the future of CLL treatment? Are you hopeful?

Dr. O’Brien:                

Absolutely. I think we’ve had something like six drugs approved in the last seven years, which is mindboggling. I think in the 30 years before that, we didn’t even have six drugs approved. That’s how rapidly – it’s mindboggling, really. That’s how rapidly the field is moving forward. And not just CLL, but other cancer fields also are moving at a very dizzying pace.

Which is great because that – anything that gives us more options is wonderful. So, I am very, very optimistic about CLL going forward. And I’m also very hopeful that some of these combination regimens might actually be – small molecules might actually be curative in the long run. But I will say it’s way too early to know that.

Katherine:                  

Are there emerging treatments that patients should know about?

Dr. O’Brien:                

So, one of the categories we haven’t talked about, where there actually are two FDA approved drugs, are PI3K inhibitors – that’s another oral small molecule. They’re not approved for frontline therapy. So, that’s kind of why we weren’t talking about them so much today where we’re talking about making a choice for the first therapy. But they are approved for patients where the disease reoccurs.

And there’s two of those as we mentioned. We have antibodies, which we really haven’t talked about very much, and then there’s new classes of drugs that are being explored in clinical trials. So, for example, there are interesting drugs which are antibodies that bind to the patient’s own T-cells and they also mind the CLL cells and they redirect the T-cells towards the CLL cells.

Kind of like CAR-T but inside the body without having to take out the T-cells. So, those are really interesting class of drugs. None have been yet approved in CLL or lymphoma, but I think those are on the horizon and looking very promising.

Katherine:

Hmm. One last question, Dr. O’Brien. In this uncertain time, do you have any advice related to COVID-19 for CLL patients?

Dr. O’Brien:                

It’s a hard time for everybody and particularly CLL patients because we know that they’re immunocompromised by – and even if you’ve never been treated and you probably never get any infections, which is quite a number of people with CLL, unfortunately you do have to think about yourself as being a high-risk patient.

So, masks are very important. Washing hands. Avoid – social distancing. Avoiding crows. It’s really important for patients with CLL to follow those same guidelines that we’re giving to everybody. But very important for them because they are in a higher risk group.

Katherine:

How do you feel telemedicine is working for CLL patients?

Dr. O’Brien:                

Telemedicine works I’d say better for CLL patients than some other patients, particularly watch and wait patients. Obviously the one thing that we can’t do in telemedicine is a physical exam. But in patient we can get – have patients get their blood counts done and then talk to them and see how symptomatic they are and know what their blood counts indicate anything is changing.

And then what I’ve been doing is, say I have a watch and wait patient – or it also applies let’s say to a patient who’s been on ibrutinib for years now and they’re in remission. There’s probably nothing to exam anyway. Right? So, those patients are good. I think it’s not going to work very well if you’re starting a new treatment. But for people who are watch and wait or have been on established treatments that are doing well, it works really well.

And then you can use the video visit if the patient says, “This is going on.” Whatever it is. “And I think I’m worried about this or I have this pain here.” Or whatever. If that’s an issue, you can always then schedule a regular visit. Right?

But I think that it – because it’s a chronic disease as opposed to acute leukemia where you really can’t do video visits, I think it lends itself to it very well. And my expectation is that moving forward, even after hopefully COVID has died down or we have a vaccine, that video visits are definitely here to stay.

Katherine:                  

Yeah. Yeah. I agree with you. What about patients who are fearful going into a medical center? Do you have any advice for them?

Dr. O’Brien:                

Usually – and it does vary. I also would be nervous if it was a hospital-based place where I had to go for my visit. But for example, where we are in the cancer center, it’s a completely separate building. Everybody is temperature checked before they get in. Everybody has to fill out a questionnaire about their symptoms. If they do have a low-grade temperature, we immediately triage them to another area.

So, actually I think the cancer center is probably a pretty safe place to be. Probably safer than the grocery store in that sense, because of the screening and the testing of the temperature of everybody who comes in there. And, of course, everybody has a mask on.

So, I would be probably a little bit weary in a hospital setting where they may be many sick patients hospitalized with COVID. But I think in a lot of clinic buildings or freestanding buildings, I probably would not be that worried.  

Katherine:                  

Well, Dr. Susan O’Brien, thank you so much for joining us today. 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. Thank you so much for joining us.

Ask Your Doctor About These Essential Genetic Tests for CLL

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Ask Your Doctor About These Essential Genetic Tests for CLL from Patient Empowerment Network on Vimeo.

Genetic testing results can impact a chronic lymphocytic leukemia (CLL) patient’s treatment options and provide a deeper understanding into their disease. Dr. Steven Coutre, a CLL specialist, reviews essential tests and explains their role in CLL care.

Dr. Steven Coutre is a Professor of Medicine in the Hematology Department at Stanford University Medical Center. Learn more about this expert here.

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Transcript:

Dr. Steven Coutre:

In terms of testing for CLL, additional testing, of course, diagnostically, it’s generally not a challenge. It’s very straight-forward. A test that we call Flow Cytometry on a blood sample is usually sufficient to establish the diagnosis. Very, very uncommonly would a bone marrow exam be needed, for example. And in routine practice, also, we don’t necessarily give CT scans to establish a diagnosis or even to, as people say, stage the disease. It really isn’t necessary in most cases.

However, we do have a staging system that correlates with the extent of the disease and that’s simply based on our exam and blood counts, but people also want more information. They wanna know how they’re gonna do, specifically. So, we can add additional tests, genetic testing as people often call it, that can further subdivide individuals into groups that give you additional information on how you might do, meaning if you’re without symptoms, and an observation is recommended, you wanna know, “Well, how long is it gonna be before I need treatment?” Although our staging system gives that information, we can refine that further.

One test is the so-called FISH test, which looks at specific chromosome abnormalities, and the second test that’s generally used is called the IGHV Mutation Assay. That’s really looking at what’s called the mutational status of your immunoglobulin genes. So, it’s really those two broad categories that are most relevant.

Now, we don’t necessarily advocate doing that testing on everyone at the time of diagnosis. Certainly, not everyone who is without symptoms, where we’ve already decided that treatment is not indicated. So, as you can imagine, you can do that testing. You might come up with a profile that’s less favorable. And then, instead of the watch and wait approach, or as folks like to call it, “watch and worry approach,” you worry even more. But then, of course, if you have a favorable profile, then you’re happier. You’re more pleased.

However, we don’t do anything differently regardless of what those tests show, at least at current state. Compared to a decision that’s already been made about treat or not treat. We do, however, strongly advocate getting that testing at the time of treatment, and sometimes, repeating some of the testing with subsequent treatment, when you require treatment, say, a second time, in some cases. So, very important to have a discussion about these tests and what information you will get from them.

Well, we’ll often see patients who are coming for another opinion about their disease. Perhaps they’ve been recently diagnosed, and they have been advised for observation, so, it’s, of course, natural to ask whether that’s a reasonable approach. And in that context, other testing often comes up in the conversation. Perhaps they had the testing done, the FISH, and the mutational testing, and they wanna know what it means, or actually we see some results that have been obtained and we ask them about it. And there’s very often confusion, or really lack of information about what they mean.

So, we really try to discuss that issue. That issue of testing with each and every patient, whether or not they’ve had it done, really trying to let them know what it means. That way they’re fully informed, and in some cases, people feel very strongly that they would like to have it done, even through they realize that we’re not gonna act on it at that point. So, I think pretty much for all patients, it should be part of the initial discussion.

Again, in terms of genetic testing are these tests that I discussed. It’s important to understand what information they give you so you understand why your physician may be making a distinction between one therapy versus another. It is very, very important to get that testing, if somebody is talking about using chemotherapy, for example, hopefully. That’s quite uncommon. But with our newer agents, we know that they work broadly despite those other features.

Nevertheless, I think it’s important for a patient to at least expect the discussion about these tests. We’re not asking you to go to your physician and ask that they be done in all cases, but really understand perhaps why your physician recommended that they not be done at that particular time. 

Advocate for These CLL Genetic Tests

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Advocate for These CLL Genetic Tests from Patient Empowerment Network on Vimeo.

Genetic testing results can influence a chronic lymphocytic leukemia (CLL) patient’s treatment options and provide a more in-depth understanding into their disease. Dr. Philip Thompson, a CLL specialist, reviews key tests that CLL patients should advocate for.

Dr. Phillip Thompson is an Assistant Professor in Medicine in the Department of Leukemia at The University of Texas MD Anderson Cancer Center. Learn more about this expert here.

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Transcript:

Dr. Philip Thompson:

I would say that I see a lot of patients that have previously seen an oncologist closer to home and then traveled to MD Anderson for a second opinion. And so, I can say that over the last three or four years, there’s definitely a significant change in the awareness of physicians in general about doing genetic testing for CLL.

So, in particular, almost everybody will get a FISH test, which I didn’t always see three or four years ago. And more patients are now having IGHV mutation status analysis done. The thing that I see that is very rarely done, though, is what we call next-generation sequencing, or NGS, that looks for mutations in individual genes, and most importantly, in the TP-53 gene that I mentioned.

So, I would – and the other thing that often isn’t done is what we call a carrier tag, which is a routine analysis of the chromosomes of the CLL cells. And it requires some special techniques for the lab to get it to work in CLL. But that can actually provide additional information compared to just FISH.

So, I would suggest to a patient, particularly if they’re gonna do a bone marrow biopsy on you, which is an invasive procedure, that you really try to get some clarity around what tests are going to be ordered on that beforehand. And if you’ve just been diagnosed and you’ve got early-stage CLL, you can make an argument about how many of these tests are absolutely necessary to start with. Because the biggest utility in these tests is in determining what type of treatment you’re going to have.

If you’re not immediately going to have treatment, they don’t necessarily change what your oncologist is going to do. They’re going to monitor you over time and see if your disease is getting worse or not. But I still think they’re useful to have the – a lot of them are useful, particularly the IGHV mutation status and FISH are useful to have at initial diagnosis. Because they give you a really good idea of what the biology of this disease is – this patient’s disease is like and how quickly they’re likely to progress, and that may change how frequently you monitor the patient.

But anyway, I would say it’s important to ask them what genetic testing you are gonna get. And that you ask – have an understanding of what can be ordered.

 And in particular, if you’re going to get treatment, you must ask for TP-53 sequencing, FISH for 17-P deletion, and IGHV mutation status because those three things are essential to determine the optimal treatment that you have. And you shouldn’t feel shy about asking, are those things going to be done.