CLL Newly Diagnosed Archives

 

Your CLL diagnosis is just a starting point. Even though the path ahead may seem unclear or even insurmountable, armed with knowledge you can take control.

Let us help you become empowered to understand your diagnosis, to confidently ask questions, and to identify providers that are the best fit for you.

More resources for CLL Newly Diagnosed from Patient Empowerment Network.

 

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

Download This Guide

ResourceGuide_CLLToolkit_OBrienF

Download This Guide

What Should You Know About the Future of CLL Treatment?

What Should You Know About the Future of CLL Treatment? from Patient Empowerment Network on Vimeo.

As chronic lymphocytic leukemia (CLL) research continues to expand, more treatment options for patients with CLL are emerging. Dr. Susan O’Brien, a hematology-oncology specialist, discusses recent CLL treatment developments.

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

See More From The Pro-Active CLL Patient Toolkit


Related Resources

 

Should You Discuss a CLL Clinical Trial with Your Doctor?

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

Transcript:

Katherine:

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

Dr. Susan 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. Susan 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.

What Are Common CLL Treatment Side Effects?

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

What are common chronic lymphocytic leukemia (CLL) treatment side effects? Dr. Susan O’Brien, a Hematology-Oncology specialist, provides insight into common CLL treatment side effects and how they influence a treatment plan.

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

See More From The Pro-Active CLL Patient Toolkit


Related Resources

 

Should You Discuss a CLL Clinical Trial with Your Doctor?

 How Do You Know If Your CLL Treatment is Working?  Key CLL Treatment Decision-Making Factors

Transcript:

Katherine:

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

Dr. Susan 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. Susan 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.

Key CLL Treatment Decision-Making Factors

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.

See More From The Pro-Active CLL Patient Toolkit


Related Resources

 

Should You Discuss a CLL Clinical Trial with Your Doctor?

What Are Common CLL Treatment Side Effects?

What Should You Know About the Future of CLL Treatment?

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 to Be A Partner in Your CLL Care

How to Be A Partner in Your CLL Care from Patient Empowerment Network on Vimeo.

Staying updated about chronic lymphocytic leukemia (CLL) can help patients become partners in their own CLL care. Dr. Susan O’Brien, a Hematology-Oncology specialist, explains how self-advocacy and credible web sites can be useful tools to help patients be active in their care.

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

See More From The Pro-Active CLL Patient Toolkit


Related Resources

 

Should You Discuss a CLL Clinical Trial with Your Doctor?

 How Do You Know If Your CLL Treatment is Working?  What Should You Know About the Future of CLL Treatment?

Transcript:

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. Susan 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 they’re 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.

Katherine:                  

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

Dr. Susan 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. Susan 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.

How Do You Know If You’re CLL Treatment is Working?

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.

See More From The Pro-Active CLL Patient Toolkit


Related Resources

 

Should You Discuss a CLL Clinical Trial with Your Doctor?

What Are Common CLL Treatment Side Effects?  How to Be A Partner in Your CLL Care

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?

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.

See More From The Pro-Active CLL Patient Toolkit


Related Resources

 

What Should You Know About the Future of CLL Treatment?

What Are Common CLL Treatment Side Effects?  How Do You Know If Your CLL Treatment is Working?

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.

Communicating About Cancer: A Brief Guide to Telling People Who Care

Getting a cancer diagnosis can easily be the most terrifying, heart-wrenching experiences one has in their lifetime. Everything from different treatment options (if you’re lucky), to financing, and maintaining quality of life suddenly are in full force front and center. It can be hard to know who to turn to if you’re not directed to a support group (of which there are many), and especially how to tell loved ones and co-workers. The choice is yours, of course, in whom you wish to tell and when – there is no right or wrong answer. (However, I and many others have found that having a caregiver to help manage appointments, billing, etc. can help).

Should you choose to tell others, here are some tips that I have read and/or heard from other cancer patients/survivors as well as some I have found personally helpful:

Kids:

  • It depends on the age – using simpler terms with younger kids (8 and under) may be more helpful, while older kids and teens can understand more detail. For example, saying that you’re sick and you’re getting the best care from a team of doctors who really want to help you get better
  • According to the American Cancer Society, children need to know the basics, including:
    • The name of the cancer
    • The specific body part(s) of where it is
    • How it’ll be treated
    • How their own lives will be affected
  • Think of a list of questions ahead of time that you think they may ask and jot down answers, such as how the cancer happened (that it’s not anyone’s fault), if it’s contagious, and/or if it’ll be fatal
  • Make sure that they know you are open to talking about it at any time. You can also perform check-ins with each other to monitor feelings

Family and friends:

  • Select a group of people, including immediate family and close friends
  • Divulge information only you feel comfortable sharing. Maybe it’s the basics, as mentioned above, or more detailed information
  • Prepare for different reactions, including sadness, anger, frustration, depression, anxiety, compassion, and support
  • Also prepare for people to not feel comfortable and feel as if they’re helpless. A cancer diagnosis is a heavy weight to bear, and not everyone will feel like the have the capacity to help as much as they want to
  • As the patient, tell them how you’re looking for support (ex. what are your needs during this time, including physical, emotional, mental). Guiding members of your support system to get your needs met may help them feel more at ease and able to help

Work:

  • Telling a supervisor/manager may be one of the hardest tasks for fear of discrimination
    • However, the Americans with Disabilities Act (ADA), which covers employers with 15 ore more employees, prohibits discrimination based on:
      • Actual disability
      • A perceived history of disability
      • A misperception of current disability
      • History of disability
    • The ADA also:
      • Protects eligible cancer survivors from discrimination in the workplace
      • Requires eligible employers to make “reasonable accommodations” to allow employees to function properly on the job
      • Ensure that employers must treat all employees equally
    • The Family and Medical Leave Act (FMLA) also gives you the right to take time off due to illness without losing your job
      • However, an employee must have worked for his or her employer for at least 12 months, including at least 1,250 hours during the most recent 12 months in order to qualify. The law applies to workers at all government agencies and schools nationwide as well as those at private companies with 50 or more employees within a 75-mile radius
    • The Federal Rehabilitation Act prohibits employers from discriminating against employees because they have cancer
      • However, this act applies only to employees of the federal government, as well as private and public employers who receive public funds

Sources:

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

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

See More From The Pro-Active CLL Patient Toolkit


Related Resources



Advocate for These CLL Genetic Tests
 

CLL & COVID 19: What Do Patients Need to Know?

 

How to Learn More About Your CLL

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

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.

See More From INSIST! CLL


Related Resources

 

Partnering With Your Doctor on CLL Treatment Decisions

 

CLL & COVID 19: What Do Patients Need to Know?

 

How Can CLL Patients Take Advantage of Telemedicine?

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

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.

See More From INSIST! CLL


Related Resources

 

How to Learn More About Your CLL

 

How Does COVID Impact CLL Patients?

 

What Do Genetic Tests Reveal About My CLL Treatment Options?


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.   

What Do Genetic Tests Reveal About My CLL Treatment Options?

What Do Genetic Tests Reveal About My CLL Treatment Options? 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. Phillip Thompson, a CLL specialist, reviews three important testing results that can impact treatment timing and approaches.
 
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.

See More From INSIST! CLL


Related Resources

 

Advocate for These CLL Genetic Tests

 

CLL & COVID 19: What Do Patients Need to Know?

 

How to Learn More About Your CLL


Transcript:

Dr. Philip Thompson:

So, there are three main things we look at before initiating treatment in a patient.

One is what we call the IGHV mutational status of the patient. And this basically splits people into types of CLL. So-called mutated or unmutated. And this is a relatively complex concept. Basically, what happens in normal B-lymphocyte development, so B-lymphocytes are part of your immune system. Their job is they have a probe on the surface of the cell that looks for invading microorganisms. And when they find an invader, this probe binds to the organism. And then the cell actually undergoes, as part of its normal development, a process of mutation so that it makes the best possible antibody to fight that infection. So that’s a normal process that the B-lymphocyte undergoes when fighting infections.

So, CLL can arise from what we call a mature antigen-experienced mutated B-cell, or it can arise from a naive B-cell that has never gone through that process, in which case, it will have an unmutated IGHV. Now, it’s kind of counterintuitive, but the patients with a mutated IGHV generally have better outcomes. That type of CLL is less proliferative, it doesn’t grow as fast, and it also tends to respond better to certain types of treatment. Particularly, it responds better to chemotherapy than patients with unmutated IGHV.

However, the difference between those two is less important if you’re getting some of the newer therapies. Particularly, it seems like if you receive BTK inhibitors, it doesn’t really matter if you have mutated or unmutated IGHV, patients are responding very well. But I like to know whether they have a mutated or unmutated IGHV because it’s helpful for giving the patient an expectation of how their disease is likely to behave biologically.

But also, if they have a mutated they may be a candidate for chemotherapy-based treatment. Whereas if they have unmutated IGHV, I don’t use chemotherapy for those patients.

 

The second thing is a test called FISH. And FISH looks for chromosome abnormalities. So, we have 46 chromosomes, 23 from our mother and 23 from our father. They contain all of our genetic information. And in malignant diseases, you can have major abnormalities in the chromosomes of the cancer cells. Not in the rest of your body, just in the cancer cells. And they happen because of errors that are made when the cells are replicating their chromosomes.                                                                 

So, in CLL, there are four common abnormalities that we look for in a test called FISH, and they tell us a lot about the patient’s prognosis. And there’s one in particular that we look at that has a major impact on our decision making, and that’s a deletion on Chromosome 17.

So, a missing piece of Chromosome 17. And the reason that that’s important is it tends to be an aggressive form of CLL. It also does not respond to chemotherapy, or if it does, the responses are very, very short-lived. So basically, that’s a contrary indication to receiving chemotherapy for your CLL when you should receive another form of therapy if you have a 17-P deletion.

And then, finally, we look at a type of – we look for individual gene mutations in the cells. And that’s different from IGHV mutational status, although the names are kind of similar.

So, in CLL, there are numerous genes that can be affected by mutations that alter the function of the gene. In some cases, it makes the gene non-functional; in some cases, it changes the function in some way that perturbs the normal functioning of the cell and contributes to the malignant transformation of that cell.

So, the most important one, again, relates to a gene called TP-53. So that’s the gene that is deleted if you lose a piece of Chromosome 17. It’s located on the P arm of chromosome 17. If you mutate that gene, it has the same consequences essentially for the cell as if you delete it by deleting a piece of the chromosome. And the two often go together, so you’ll have a 17-P deletion and a mutation of the TP-53 gene on your other Chromosome 17. Because remember, you have two chromosome 17s. So, if you lose both, it may be even worse than only having one. However, it does seem that if you only have a mutation on the TP-53 gene, but you don’t have a deletion on Chromosome 17, that the responses of those patients to chemoimmunotherapy are still really poor.

So, it’s very important to find out, do you have a TP-53 mutation as well as do you have a deletion on Chromosome 17 before you embark on treatment, particularly if that treatment is going to be chemotherapy. So, those are the three things that we look for before    we start any patient on therapy.

How Does COVID Impact CLL Patients?

How Does COVID Impact CLL Patients? from Patient Empowerment Network on Vimeo

How has chronic lymphocytic leukemia (CLL) care been impacted in the age of COVID-19? Dr. Phillip Thompson explains how COVID affects CLL patients and the importance of not delaying CLL treatment.
 
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.

See More From The Pro-Active CLL Patient Toolkit


Related Resources

 

How Can CLL Patients Take Advantage of Telemedicine

 

CLL & COVID 19: What Do Patients Need to Know?

 

How to Learn More About Your CLL


Transcript:

Dr. Philip Thompson:

There was a large ISH study published, I think, in Lancet Oncology, recently,  from the UK, where they looked at outcomes for patients with cancer. And of course, it was all patients with cancer, not specifically CLL, specifically blood cancers. But I think there were roughly 200 patients with hematologic malignancies.

And the interesting thing that I noticed, there were that patients who had recent chemotherapy, which I might have expected to be a really high-risk feature for a poor outcome, actually didn’t do any worse than patients who hadn’t recently been treated.

By far, the most important predictors of outcome for patients were whether their cancer was controlled or not, number one. And then other co-morbidities that patients had, like lung disease, advanced age, that sort of thing. So, actually, we need to see more data from more – from datasets that have more patients with CLL. But it seemed like the type of treatment mattered less than whether the disease was controlled and what other problems the patient had in terms of predicting their outcome from COVID.

So, I am taking that information with a – we have to, as I said, see more data. But I’m not going to use COVID as a reason not to patients who need treatment.

We may stretch things out somewhat in people where the decision is really well, and maybe you don’t definitely need to treat. But I don’t want to see people get into really severe trouble from their CLL because we’re trying to delay treatment because of COVID. Because that might actually be counterproductive. Because people with very uncontrolled CLL, if they were to get the infection, may actually have inferior outcomes to people whose disease is controlled.

Partnering With Your Doctor on CLL Treatment Decisions

Partnering With Your Doctor on CLL Treatment Decisions from Patient Empowerment Network on Vimeo.

Which CLL treatment could be right for you? Dr. Steven Coutre, a CLL specialist, reviews current approaches and explains why patients should stay informed about emerging options.

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

See More From The Pro-Active CLL Patient Toolkit


Related Resources

 

How Can CLL Patients Take Advantage of Telemedicine

 

CLL & COVID 19: What Do Patients Need to Know?

 

How to Learn More About Your CLL


Transcript:

Dr. Steven Coutre:

Well, any decision about treatment is, of course, a joint decision between the physician and the patient. It’s our job to really educate each individual patient about their options and also, I think, very importantly, determine what their goals are. You don’t really follow a strict algorithm. It’s really making a decision for each individual patient.

So, of course that takes into account other medical conditions they may have, the nature of their disease, why it is that we’re treating that individual, what we’re trying to accomplish, and very importantly, what the goals of therapy are for that individual. That may be very different, for example, for somebody who’s quite young versus somebody who’s older or who might have significant medical comorbidities.

I think patients are always well served by asking questions about the treatment, side effects of treatment, of course, these days, cost comes into play, so I think we have an obligation to let patients know the differences between the therapies because often we have choices about a therapy. There isn’t any one best therapy, for example. It’s often a number of choices, and sometimes that can be very, in some ways, confusing for patients, because they wanna know, “Well, what’s the best therapy?” and as I mentioned, it’s not so much what’s the best. It’s what’s the best for that patient, and many times that’s choices of treatment.

Some are time limited, for example. Some are continuous therapies. So, there’s plusses and minuses, and again, it all goes back to what’s your goal for that individual patient, what are their preferences in terms of the treatment that they want to receive.

The drugs that I mentioned earlier are Bruton Acalabrutinib, Venetoclax, for example. These are really the first of our new really transformative drugs for CLL. Drugs, along sometimes, with our antibodies, Rituximab and Obinutuzumab, which are really replacing the use of chemotherapy in treating the disease. So, moving forward, we’re looking at combinations of these drugs. Can we drive responses deeper? That would lend itself to stopping therapy, in some case, instead of using continuous daily therapy as we currently do with drugs like Ibrutinib or Acalabrutinib.

So, that’s the major focus right now. There, of course, will be other new drugs. There’s a third drug, Zanubrutinib, which is another BTK inhibitor, so that’ll probably play a role in treating CLL. There may be differences in side effect profiles between these drugs. There isn’t any new drug that we’re looking at currently that’s far enough along to say that it’s gonna be yet another fundamentally different, revolutionary therapy for CLL. But those, of course, can come along as we learn more about the biology of the disease.

You may have heard about CAR T-Cell Therapy, where you’re using your body’s own immune system to try to target the cancer. This has been very successful and is actually approved for use in other diseases, like large cell lymphoma, for example, but it remains very much investigational in CLL. There are also other clever ways of trying to achieve the same, endpoint, that is, using your own immune system to target the cells, that are simpler than CAR T-Cell Therapy and those kinds of approaches are also in clinical trials.

So, when you’re having the discussion about treatment, it’s always good to learn about what the latest therapies may be, even if they are investigational. I think that’s how we move the field forward and, of course, the newer drugs that we have brought forward came from clinical trials that patients greatly benefitted from. So, always ask your physician about clinical trials. Another great source for that, I think, is the Leukemia Lymphoma Society. They’re very patient-focused, they’re very up to date on the latest therapies and the latest trial results. They have a very robust presence, both online, and also, generally locally. There’s local chapters. So, I would encourage you to reach out to them for information.

Comprehensive Hematological Cancer Centers