How Could CLL Treatment Advances Benefit You?

How Could CLL Treatment Advances Benefit You? from Patient Empowerment Network on Vimeo.

 Dr. Kerry Rogers reviews recent chronic lymphocytic leukemia (CLL) treatment advances and explains how patients may benefit from evolving research.

Dr. Kerry Rogers is a hematologist-oncologist at The James Cancer Hospital and Solove Research Institute. More about Dr. Rogers here.

See More From The Fact or Fiction? CLL Series


Related Resources

Tips for Determining the Best CLL Treatment for You

The Truth About CLL Treatment Options

What You Need to Know About Developing CLL Research


Transcript:

Patricia:

Excellent. What do you think about the future – how do you feel about the future of CLL treatment? What makes you hopeful?

Dr. Rogers:                 

Oh. Well, I think a couple things. One is for CLL, in many ways, the future is now, and I think it’s only going to get better from here on out.

So, a little less than a year ago, two very large clinical trials were reported that compared our best chemotherapy to oral targeted therapy with an ibrutinib-based regimen for CLL, and the oral targeted therapy was superior in terms of something we call “progression-free survival,” which is how long people were alive without their CLL coming back or causing problems.

So, oral targeted agents, which, in general, not – everyone’s an individual, so until you try a treatment, you don’t know what’s gonna happen, but in general, have fewer side effects than chemotherapy, are better at controlling CLL than chemotherapy, so that’s what I like to put in the category of “the future is now,” and I think it’s only gonna get better. So, we’re improving on our existing oral targeted agents with next-generation drugs that have slightly different side effect profiles.

We are also studying combinations of these drugs, and oral targeted agents, and monoclonal antibodies to try to make treatment shorter, to try to get remissions deeper, to really try to improve the quality of life of people taking these therapies and not just improve how long they live with CLL.

And then, for people that really have the worst of the luck with CLL that have really high-risk findings, that don’t benefit for as long as we’d like from oral targeted therapies, that their CLL comes back after a couple years on those, I think the most exciting thing is really CAR T-cell therapies and those cellular-based therapies that aren’t donor stem cell transplant because I’ve seen people who have really benefited from those who had terrible problems from their CLL before that, and I think that’s gonna improve quality of life for a very specific subset of our CLL patients.

That is still in clinical trials for CLL, but has been in enough of them I can feel very confident that we have an idea about what the side effects are and how well it works. So, that’s really exciting. Can I add just one more thing about this before I…?

Patricia:                      

Absolutely.

Dr. Rogers:

So, I saw a consult recently for a person that was recommended to start treatment for CLL. His questions for me were, “Should I start treatment now, and what treatment should I take?” This person had never had a treatment before. So, I agreed with his oncologist, who said that he should start treatment now, and his oncologist had talked about several options, but I think with some of the changes in what we’re recommending for CLL, his oncologist had also wanted him to come see me to get a recommendation too, so it was like, “Oh, that’s great. Why don’t you go see Dr. Rogers at Ohio State and see what you should do?”

And so, one of the things he had discussed with the two oncologists in his office closer to his home were, “Oh, we have these – we have ibrutinib, it’s a really outstanding oral targeted agent, but you’ve gotta take it for a really long time, so why don’t you just take chemotherapy, because I think something better will come along?”

And, I was like, “This something better. Literally, this was demonstrated to be better than the chemotherapy. Something better did come along, and it’s this.” So, ibrutinib is better than chemotherapy. I think the idea of “Why don’t we do a less effective treatment because something better might come along?” is not true anymore. We have something better. And, he actually decided to enroll in a randomized phase 3 trial that’s gonna set the new standard of care in CLL, so he was very excited to get treatment as part of a research study. I think he decided that was actually really important to him, and he really liked what the study was.

But, it was just – it was kind of like, “Maybe something better will come along.” I’m like, “Something did.” So, that’s kind of the nice position that many people with CLL are in now. There’s still a lot of work to be done in CLL, but I just get increasingly hopeful as therapies get easier to take and more effective.

The Truth About CLL Symptoms

The Truth About CLL Symptoms from Patient Empowerment Network on Vimeo.

When it comes to CLL symptoms, what’s fact and what’s fiction? Dr. Kerry Rogers reviews chronic lymphocytic leukemia (CLL) symptoms and discredits common myths.

Dr. Kerry Rogers is a hematologist-oncologist at The James Cancer Hospital and Solove Research Institute. More about Dr. Rogers here.

See More From The Fact or Fiction? CLL Series


Related Resources

Fact or Fiction? CLL Causes and Symptoms

CLL Genetic Tests: How Do Results Impact Treatment and Care?

Overwhelmed By a CLL Diagnosis? Key Steps to Take


Transcript:

Patricia:

Sure. Let’s talk about symptoms a little bit more. Here are a few things that we’ve heard from CLL patients. Are these fact or fiction? “I shouldn’t travel if I have CLL, since I may get an infection.”’

Dr. Rogers:

I think that is fiction. So, I’ve heard this, too, and the way I like to think about it is if you’re expected to live with CLL for a very long time, you had better go out and do the things you want to do. This is not supposed to keep you a prisoner in your house. Now, if you’re in the middle of starting some sort of more intensive treatment for it, or less intensive treatment, but you started last week, that is not a good time to go somewhere where there are no hospitals – in the middle of the Pacific Ocean or to rural Africa. So, you’ve gotta be smart about those things, but you wouldn’t go to rural Africa the week after you had a heart attack, either.

So, I think for people who are doing well, living with CLL, but aren’t needing some sort of – in situation where they need a lot of medical visits and care right now, definitely travel. And then, yes, you can get infections when you travel, but you can get infections in your own neighborhood, and I don’t think that keeping yourself only in your neighborhood or where you live is really gonna help you live any better.

You do have to be kind of smart about it. So, if you’re gonna go somewhere where there’s malaria, go to a travel clinic. Make sure that you take the advice of the travel clinic. If you’re going to Houston, you probably don’t need to do anything special. If you’re going to Central America, then you might wanna go to a travel clinic. And, as you know, most people with CLL are instructed to avoid live vaccines, so you have to tell the travel clinic, “I’m going X place. What are the recommendations? I’m not supposed to get live vaccines.” Sometimes, they can recommend low doses of antibiotics to avoid this. They have practical ways to avoid it – for ticks, if you tuck your pants into your socks.

So, being cautious and taking care not to get infections is good advice, but I don’t think it really helps people to limit their travel. Does that make sense? If someone got a stem cell transplant or something, that’s a different category. I’m talking about most people with CLL.

Patricia:                      

Sure. Well, you mentioned the problem with live vaccines and patients with CLL. Should patients with CLL get a flu shot or vaccines? Because we hear from some patients – they say they shouldn’t.

Dr. Rogers:                 

Yeah. So, because CLL is a cancer of the immune system cells – B lymphocytes – it makes the rest of the immune system function differently than in healthy individuals. So, the benefit that people get from vaccines if they have CLL is actually less, so the – if you get a flu shot, it doesn’t decrease your risk of getting the flu the same way it would for a healthy adult.

However, it’s still a good idea to do because people with CLL live at a higher risk of infection, and the way I view it is you should take every opportunity to decrease your risk for infection because influenza is curable, and if you can decrease your risk even a little bit, I would do it. Now, live vaccines are a bit of a debate because people who are immunocompromised don’t get them. So, live vaccines are a live virus similar to the on that you’re being vaccinated against.

So, examples of live vaccine are the oral typhoid vaccine, the MMR vaccine – I know we’re having measles outbreaks in some parts of the country, so MMR is kind of off the table. There is an intranasal flu vaccine that’s live. It’s very hard to get these days and uncommon to be offered. So, I recommend people get all the vaccines they’re due as long as they’re killed vaccines.

There is now a new shingles vaccine called Shingrix, which is a killed vaccine. I’ve had many patients get that. We’re not sure how well it works in CLL; probably not as well as in healthy adults, but it is safe, so if you get your hands on it – it’s been on shortage – there’s no reason not to get these things. I do think for people that have had really severe vaccine reactions that’s always an individual conversation with your doctor.

Patricia:

Yeah, it sounds like it. How about this one? “I’m not experiencing symptoms, so I don’t need treatment.”

Dr. Rogers:

That may or may not be true. So, in some cases, especially if people are in monitoring or observation for their CLL, the goal is to start treatment before you get horribly sick, right?

So, in some cases, you’ll see that the changes in the blood really predict that someone’s going to start to be really sick from CLL in the next few months. You might see their platelet count is going down, or their hemoglobin is going down a lot, and so, there’s kind of a level – so, a platelet of 100 and hemoglobin of 10-11 where you think about treatment. It’s not like, “Oh, you hit this level, you need to do treatment tomorrow,” but it’s time to plan a treatment.

Also, that is the one group of CLL patients where a bone marrow biopsy is really needed to make sure that the decrease in blood counts is CLL and not something else. Most of those people feel fine, but if your platelet count is headed down, it’s probably best to start treatment before your platelet count is below 10 and you start having bleeding symptoms. So, there are some people who are recommended to take treatment for CLL because their doctor has noticed that they’re gonna be at risk for developing problems or symptoms that might make them feel much less well.

And so, you wanna start the treatment when you’re still feeling good and before you’re having a lot of bleeding and issues. However, the majority of people who don’t have symptoms don’t need treatment for it. Quite a while ago, they did randomize people with intermediate- or high-risk CLL to either chemotherapy at diagnosis or delayed until they had one of those treatment indications I’ve been talking about, and treating it with chemotherapy just because you’ve diagnosed it did not help people live longer or better. So, if people are not having symptoms and their doctor doesn’t notice a problem, there’s no reason to treat it.

Patricia:                      

We talked a little bit how diet and exercise can help with symptoms, but can they control symptoms? Tricky question.

Dr. Rogers:                 

I’m not sure. I think that’s really individual. The thing I get asked all the time is, “What diet do I go on to make my CLL go away, or so I never need treatment?” And, there are no evidence-based diets to make your CLL go away. The coffee enema thing doesn’t work. The no-sugar thing – I’m not sure that works.

I do tell my patients to try to eat and behave as if they’re gonna be around a long time because people with CLL usually expect to live many, many years, and heart disease is still killing people in this country, so you can’t stop managing your diabetes, you can’t start eating hamburgers when you have horrible heart disease, so I think you still have to follow a regular, healthy adult diet.

Most people feel better if they eat fruits and vegetables and try to eat a well-balanced adult diet, so I think that helps pretty much everyone, even healthy adults, but I don’t have any specific diet to control CLL symptoms, although I did have one guy that said ever since he’s been eating white toast every morning, all his symptoms are much better. So, if you find something that works for you, it doesn’t matter what it is. If it’s working out for you, you should do it.

How to Take Control of Your CLL Symptoms

How To Take Control of Your CLL Symptoms from Patient Empowerment Network on Vimeo.

 From fatigue to swollen lymph nodes, Dr. Kerry Rogers discusses her approach to managing common chronic lymphocytic leukemia (CLL) symptoms.

Dr. Kerry Rogers is a hematologist-oncologist at The James Cancer Hospital and Solove Research Institute. More about Dr. Rogers here.

See More From The Fact or Fiction? CLL Series


Related Resources

Fact or Fiction? CLL Causes and Symptoms

Fact or Fiction? CLL Treatment & Side Effects

Overwhelmed By a CLL Diagnosis? Key Steps to Take


Transcript:

Patricia:

Dr. Rogers, we’ve talked a little bit about symptoms – fatigue, night sweats, swollen lymph nodes. How do you manage the symptoms of CLL?

Dr. Rogers:

That’s a good question. So, if people have enough symptoms from CLL that’s really impacting their life significantly, then I suggest they take a CLL treatment.

So, if people have big lymph nodes that are interfering with what they’re doing – like I said, that nice man that was too fatigued to get his mail off his porch – that’s a reason to do a CLL therapy, treat the CLL, and make those symptoms go away. The really difficult ones are when you’re not sure if someone’s fatigue is related to CLL.

So, there’s many people I take care of that are living with chronic levels of fatigue that are not enough to impair their daily activities much, and you’re not sure what it could be related to, so one thing I like to do for things that aren’t clearly severe CLL symptoms is try to figure out what else could be causing it. So, I know myself and many other physicians I work with closely that treat CLL – we think we might diagnose more people with sleep apnea than fatigue related to CLL, and getting your sleep apnea treated is very important. So, it’s always important to do a very thorough look to make sure that these symptoms are from CLL.

And then, in terms of milder fatigue, treating CLL won’t always make that better because people usually live with some chronic side effects from the treatment, and it’s really hard to improve on feeling really good. So, if people have some mild fatigue but feel pretty good in general, it can really only make that worse at some point. And, I find that people themselves find ways to manage. Some people who might be in the actually elderly category like to nap, especially if they can and they’re retired.

Younger people actually shockingly sometimes find moderate exercise helpful. And, I know a lot of people find moderate exercise helpful for other forms of fatigue. So, for people living with mild levels of fatigue, that is definitely – people have those strategies to exercise. A couple people really improved their nutrition and found it helpful. So, sleeping better, focusing on maximizing benefit from things you can do, is good.

In terms of night sweats that people get sometimes that aren’t too severe, usually, they find ways to manage with fans or things like that in the bedroom.

Patricia:

These sound like important quality-of-life conversations with your physician.

Dr. Rogers:

Definitely. And, I think any time people have symptoms, it’s always good to talk to definitely your hematologist, especially if you have CLL and you don’t know if it’s CLL-related or it could be, and then, also, your primary care doctor or your general doctor, because sometimes, they’re really good at thinking of what else could be contributing, and occasionally, it’s a back-and-forth before you really determine what’s causing this and if it’s CLL-related, but either way, feeling better is really important.

The Truth About the Causes of CLL

The Truth About the Causes of CLL from Patient Empowerment Network on Vimeo.

 What causes chronic lymphocytic leukemia (CLL)? Dr. Kerry Rogers shares facts and addresses common misconceptions about the causes of CLL.

Dr. Kerry Rogers is a hematologist-oncologist at The James Cancer Hospital and Solove Research Institute. More about Dr. Rogers here.

See More From The Fact or Fiction? CLL Series


Related Resources

Fact or Fiction? CLL Causes and Symptoms

How to Learn More About Your CLL

Essential Lab Tests for CLL Patients


Transcript:

Patricia:                      

Here we go. Dr. Rogers, let’s talk about facts and fiction around CLL. Here’s what we’ve heard from CLL patients. Are these fact or fiction? “Exposure to pesticides caused my CLL.”

Dr. Rogers:                 

So, this is a very difficult one, and I will preface this by saying I’m not actually an expert in environmental exposures. I am more an expert in CLL management. But, there is some evidence that exposure to pesticides, including Roundup, increases the risk for developing non-Hodgkin’s lymphoma, and there’s a class-action lawsuit against Roundup that my patients keep asking me about.

I think it’s really hard to say for any one person whether or not their cancer is caused by pesticide exposure. If it’s someone that sprayed Roundup in their garden a couple times, then no, I wouldn’t think so. If it’s someone that was bathing in it regularly, exposed to it on the farm all the time, then it might have contributed, but there’s usually more than one thing that goes into someone getting CLL, so I would never plant the entire blame for something on one particular exposure, but I do think it’s quite possible that pesticide exposure can increase a person’s risk for developing CLL and non-Hodgkin’s lymphoma.

Patricia:                      

This is probably applicable just to veterans. “I was exposed to Agent Orange, and it caused my CLL.”

Dr. Rogers:                 

So, the same stuff I said about pesticides applies to Agent Orange, but Agent Orange can be a factor in developing CLL. It is in the VA list of diseases associated with Agent Orange exposure. So, for anyone that was exposed to Agent Orange that developed CLL, I would really encourage them to go to the VA and get their Agent Orange intake interview because they are likely entitled to VA benefits because they have CLL and were exposed to Agent Orange.

Patricia:                      

Do you hear that often from your patients who were exposed to Agent Orange?

Dr. Rogers:                 

That they’ve gone to the VA? Yes. Actually, I have a couple people that – many of these people get care at the VA, which is also great, but I do take care of a couple of people who have VA benefits due to Agent Orange exposure who have CLL for sure.

I also have a couple people that, despite the fact that they were exposed to Agent Orange, didn’t feel like going to the VA and seeing if they could get benefits, and I think that’s very reasonable, too. Whether or not people wanna do that is an individual decision, but is definitely on the list of Agent Orange exposure-related diseases. And so, the VA could provide care, medications for CLL, and in some cases, other financial benefits, so for anyone who would like, I think contacting the VA if you have CLL and were exposed to Agent Orange is not a bad idea.

Patricia:

How about this one? “CLL is only a disease of the elderly.”

Dr. Rogers:

Oh. Well, that one is definitely not true. So, CLL is not really a disease of children. I’ve never seen someone under 18 with it, and of course, the median age of diagnosis is somewhere between 65 and 70, sort of around 65, so that means that there’s a lot of people less than 65 living with CLL.

I’ve seen people as young as 20, I’ve seen some people in their 30s, I see many people in their 40s and 50s, and also, part of this question is what do you consider elderly? I don’t really know that I consider people in their 60s elderly in many cases. So, people in their 90s are usually willing to accept that they’re elderly, but people in their 60s, often, I wouldn’t call them elderly, and I know you draw these age numbers to say you’re a senior citizen, but there’s more things that contribute to the word “elderly.”

So, I guess what I’d say is this is – CLL is definitely not exclusively a disease of the elderly. There are many people in their 40s living with this, and I’ve seen people as young as their 20s, and then, also, you gotta figure out for yourself where you’re gonna draw the line and say “elderly.”

Patricia:

Sure. How about this one? “CLL is genetic, and my children may inherit it.”

Dr. Rogers:

So, this is a very difficult question. Instead of saying CLL is genetic, I think what I would say is that CLL is heritable, meaning it can run in families.

And, the rough estimate is that 1 in every 10 people that are living with CLL have someone in their family that will also get CLL, so we know that it does run in families – not in every case, but many cases – and I think at least in terms of people I’ve seen with this, people come and see me, and they either say, “Oh yeah, sure, my cousin, my uncle, my parents, my brother – everybody had CLL.” Or, they’ll say, “Really? Someone else in my family could get this?” So, it becomes pretty clear who’s gonna have it in their family and who’s not, but it does increase the risk of your family members getting CLL.

The interesting part of that is as a CLL community, I think we have not done a very – or, we have not been able to pin down a gene that causes it. So, if you think about breast cancer, colon cancer, you can say, “Oh, someone has a BRCA mutation, the family needs to get tested, we can do something to avoid your kids getting breast cancer.”

But really, with CLL, they’ve done a lot of research looking at family cohorts – and, by “they,” I mean not me specifically, but other CLL researchers have done this – and really have not identified anything that’s saying, “Oh, if you have this gene, you’re gonna get CLL, you’re at risk for CLL,” so, we can’t say it’s genetic and there’s one gene it’s pinned on, although it might be genetic based on a constellation of genes or a gene we haven’t identified. So, I think that’s kind of interesting.

The other thing that I’ll say that’s really important when thinking about whether or not your family could be at risk for CLL is that even people that have very what we call unfavorable or high-risk CLL, with something like deletion 17p, other family members that have CLL end up having a pre-CLL condition called monoclonal B lymphocytosis, or 13q CLL, or 11q CLL, so they have a completely different genetic feature for their CLL, even though you can tell they’re in the family as people with CLL.

So, it’s not that the CLL genetic factors we use to predict how you’re gonna do with it are inherited throughout the family, just the risk for getting CLL. I think that’s important to realize.

The other thing is that unlike breast cancer, where you say, “Oh, this is in your family, you should get breast MRIs, you should consider a prophylactic mastectomy,” there’s not a good screening system for CLL, and since when it’s diagnosed, it’s observed, and there’s no known way that we have to prevent it, it’s not like you have to go and get your entire family tested because we don’t have a genetic test, and a screening is not as beneficial as it is in breast cancer where you can get a surgery to prevent yourself from getting the disease. Does that make sense? Okay.

Patricia:

Thank you. What are some of the things that you hear from your patients that we haven’t mentioned?

Dr. Rogers:

About CLL?

Patricia:

About the way they got it.

Dr. Rogers:

Oh, the way they got it. Hmm.

I think the most common things I hear from people that we haven’t mentioned are in either the exposure category, to things that aren’t known to cause CLL, or infections, like, “Oh, I had a really bad bout of influenza,” or “I got pneumonia, and then I got CLL.” I don’t know if these – I don’t know if any infections that are demonstrated to cause CLL.

Sometimes, the white count can go up when people have infections in response to that, because they’re still living immune system cells, so if people get diagnosed when they have an infection because they got their blood drawn or because their white count went up because they were sick, but that’s something common I hear. And so, it’s really hard to say, “Your bout of pneumonia isn’t why you got this,” but it is frequently how people get diagnosed with that, so I hear that sometimes.

Patricia:

What are the actual causes of CLL? What do we know?

Dr. Rogers:

So, CLL, like most blood cancers is – the way I like to think about it is that your blood cells are one of the most rapidly growing and dividing cells in the body.

You know how over the course of your lifespan, your skin sloughs off, your hair grows, you have to cut it? So, your blood cells divide and turn over within your body, and they’re really quite rapidly dividing, and when cells divide, they replicate their genetic material, and just because it happens so many times over the lifespan, they make mistakes and pick up mutations.

So, many of the mutations they pick up either cause that cell to die, which is fine, or cause your immune system to attack it as abnormal, which is fine. But, in some cases, the mistake or mutation they made when the cells were dividing causes the calls to become broken or mutated in a very specific way that makes them CLL. And, it’s probably not just one mutation; it’s probably a series of them that accumulate to cause CLL.

And so, some of these things are those things we test for in a FISH panel, like 17p is an abnormal genetic change that happened as these cells were dividing over the course of the person’s lifespan, but there’s probably more changes than that that go on, and eventually, the cells become CLL, grow out of control, and have the common features of CLL. So, that’s how I like to think about it.

And then, these questions of “Oh, did pesticides contribute? Did this contribute? Did Agent Orange contribute?” is really just about did those agents cause your cells to break or mutate more, or in a specific way that would make them CLL? So, a lot of things that cause cancers in general, and not just CLL or increased risks for cancers in general, are things that alter, break, or change DNA.

CLL Staging: What Does It Mean for You?

CLL Staging: What Does It Mean for You? from Patient Empowerment Network on Vimeo

Dr. Kerry Rogers explains chronic lymphocytic leukemia (CLL) staging and how it can impact a patient’s prognosis, treatment options and overall care.

Dr. Kerry Rogers is a hematologist-oncologist at The James Cancer Hospital and Solove Research Institute. More about Dr. Rogers here.

See More From The Fact or Fiction? CLL Series


Related Resources

How to Learn More About Your CLL

Tips for Determining the Best CLL Treatment for You

Essential Lab Tests for CLL Patients


Transcript:

Patricia:

Let’s talk a little bit about how CLL is staged, Dr. Rogers.

Dr. Rogers:

So, unlike most cancers, where CLL is staged with CT scans or PET scans, the staging for CLL is actually remarkably simple, and I really like this because it limits the amount of testing you have to do for people, especially the people that might be just monitored for their CLL or observed. You don’t wanna put them through a lot of intensive testing they don’t need. So, the only two things you need to properly stage CLL are a complete blood count and a good physical exam.

So, in the United States, we use something called RAI staging, which is R-A-I staging, and before I launch into what it is, I will just say that even RAI stage 4 CLL is very treatable, and people do well for many years, so this is not the same as when you think about lung cancer or breast cancer staging, where stage 4 is a much worse spot than stage 1. The staging for CLL – all of it is still very treatable.

So, RAI stage 0 is when you only have an increase in lymphocytes, which is the CLL cells in the blood. Stage 1 is when you have increasing lymph nodes in addition to that. Stage 2 is an increased size of the liver or spleen. And then, if someone has anemia from CLL, then it’s stage 3, and stage 4 is if you have low platelets from CLL. So, 3 and 4 are indications that the bone marrow’s not working well due to CLL.

Patricia:

Dr. Rogers, it seems like CLL is a very manageable disease. What are you considering when you’re making a prognosis with a patient?

Dr. Rogers:

So, for many people, CLL is a very manageable disease. Like I said, some people have had CLL longer than I’ve been a doctor and have needed no treatment for it. However, there are people with CLL that go on to have a lot of difficulty from it, including not doing well with more than therapy or needing really new, advanced therapies, like something called CAR T-cell therapy.

So, for any individual person, you can never say how it’s gonna turn out for them, but we do use our experience taking care of lots of people with CLL to make an educated guess as to if this person’s gonna be someone that’s gonna expect to need a lot of treatment in their lifetime, or maybe no treatment in their lifetime.

And, the main things we look at in addition to just the staging or are they having symptoms or problems from CLL yet is molecular testing. So, these are genetic tests just on the cancer cells, so they’re not genetic tests that other people in the family get tested for, it’s just changes in the cancer cells, so that can give us a guess as to how long before people need treatment and how well they’ll respond to treatment.

And, I know a lot of people are probably already familiar with this, but there’s a particular chromosome change you can test for called deletion 17p, and that predicts a shorter time to needing treatment, needing more treatments in your lifetime, maybe going on to needing those advanced treatments like CAR T-cell therapy.

It used to be recommended that people with 17p get regular like-donor stem cell transplants, which, in some cases, is still done. And then, on the other end of the spectrum, there’s a chromosome change called deletion 13q, which predicts that in many cases, people don’t need treatment for many years and do very well. So, there’s a panel of chromosome changes that can predict where people are gonna fall on the spectrum.

The other chromosome change that’s become important is something called complex karyotype – and again, this is just in the CLL cells, but the karyotype is the arrangement of the chromosomes and these – the other tests I was talking about are chromosome changes picked up with a test called FISH. This is just looking at all the chromosomes, what they look like, and if there are three unrelated genetic abnormalities are more, it’s something called a complex karyotype, and it predicts people will fall in this category of needing more treatment or having more things to do with their CLL in their lifetime rather than not.

And then, the third thing that is really important is something called – and, this is gonna sound long – but, it’s immunoglobulin heavy chain gene mutational status, and mutations in the immunoglobulin heavy chain gene occur normally as these B cells mature, so people that are mutated have more mature cells that became CLL, and people that are unmutated have less mature cells, and people who are mutated that have more mature cells tend to have fewer problems from CLL in their lifetime, and there’s a few implications for CLL treatment for that category.

So, I kind of take all those things into consideration, and then, the other thing that I think is important to consider is newer molecular testing, but that’s still in development, so I think I’ll just end there for now in what I take into account.

Patricia:

I did want to ask one follow-up. Dr. Rogers, how often do you like to check in with your patients with CLL?

Dr. Rogers:

Oh, that’s an excellent question, because I think it really depends on how they’re doing.

So, people that have had a lot of changes in their CLL, like the white counts increasing, healthy blood counts going down, lymph nodes changing – then usually, I see them back more often, so I even see someone maybe six or eight weeks later if they have a lot of changes. And then, generally, people who are having changes in their CLL are taking treatment for CLL; I’ll see them at least every three months.

However, like I said, there are people who have had this CLL for decades with no changes in how their disease is, so those people I’ll see every six months, or even sometimes once a year, especially if it’s been 10 years and nothing has changed with the CLL. Even though I like them and enjoy seeing them, I’m sure they have things they’d like to do rather than coming to see me.

Key Signs That It’s Time to Treat Your CLL

Key Signs That It’s Time to Treat Your CLL from Patient Empowerment Network on Vimeo.

 Dr. Kerry Rogers defines chronic lymphocytic leukemia (CLL) and reviews key indicators that could signal it’s time for a patient to begin treatment.

Dr. Kerry Rogers is a hematologist-oncologist at The James Cancer Hospital and Solove Research Institute. More about Dr. Rogers here.

See More From The Fact or Fiction? CLL Series


Related Resources

Fact or Fiction? CLL Treatment & Side Effects

Tips for Determining the Best CLL Treatment for You

CLL Genetic Tests: How Do Results Impact Treatment and Care


Transcript:

Patricia:

Dr. Rogers, let’s just get a brief overview of CLL and how it progresses.

Dr. Rogers:

So, I’m sure everyone already knows that chronic lymphocytic leukemia is a chronic blood cancer of a cell called the B lymphocyte, and with the frequency that people are getting blood tests these days in the United States, the most common way that I see people diagnosed with this at this time is actually just having an increased white blood cell count when they went to get routine blood counts.

So, it seems like the majority of people being diagnosed are diagnosed at a time when they’re not actually having symptoms from the disease, and maybe everyone already knows or not, but the way that’s managed is that the disease is actually just monitored until some sort of what I like to call “problem” from it develops.

So, I’ll go over what the problems are that can come along as the CLL progresses, but it’s important to realize that there’s many people alive and living with CLL doing very well and not having any problems from the disease yet, and I’ve seen a couple people that have had this disease longer than I’ve been a doctor, and one person that almost had this longer than I’ve been alive with no problems from it.

So, developing something from CLL that’s gonna need treatment is not universal. So, as the – for the majority of people, though, CLL – over its natural history – will go on to progress to cause what I like to refer to as “problems” from it. Some people call them “treatment indications.”

So, when problems are developing is about the time you consider treatment before you get really sick from it, and there’s a couple main ways that the CLL can cause problems. One is that the CLL can build up in the places where those cells live, which is the lymph nodes, so people can get really big lymph nodes in their neck, in their groin area, sometimes inside the body, causing problems. And, lots of people have small lymph nodes that aren’t causing problems, and that’s okay, but if they become really big or problematic, then it’s time to do something about them.

The cells can also build up in the bone marrow, so the bone marrow produces all your healthy, normal blood cells that go into the blood and have a lifecycle in the blood. So, if your bone marrow fills up with CLL cells, then you can’t produce the regular, healthy blood cells, and it’s time to do something about the CLL.

Sometimes, the white count can get really high, and that’s not always a reason to do something, but most people do see – over the natural history or course of having CLL – their white blood cell count and lymphocyte count increases, and there’s not actually a firm number where you say, “Boy, you hit X number, it’s time to treat this,” but if the count is increasing rapidly, then usually, you want to treat this before it increases so much that you develop an issue from that. And then, the last category of things that happen with CLL that’s a problem from it are what we call constitutional symptoms.

So, this can be fatigue that’s limiting your activities, like I took care of someone that was too tired to get the mail from his porch due to CLL. He’s doing great now, but that would be a problem. Sometimes drenching night sweats or an extreme weight loss – and, I’m not talking about people that do Atkins diet lose weight, I’m talking about people that are eating everything and losing weight just because of the CLL.

And, the reason this happens that – CLL is a cancer of B lymphocytes, which are immune system cells, so they can release some of the same chemical mediators that your immune system releases for an infection, and that’s what causes some of those symptoms. But, the main things that progress over the course of having CLL are increasing lymph nodes, lowering of your healthy blood counts due to increasing CLL in the bone marrow, the white count can go up rapidly, or people can develop really problematic constitutional symptoms from it.

Fact or Fiction? CLL Causes & Symptoms Resource Guide

Download this Guide

PEN-108_ResourceGuide_FF_CLL2

Download this Guide

How to Learn More About Your CLL

How to Learn More About Your CLL from Patient Empowerment Network on Vimeo.

How can you learn more about CLL? CLL Expert Dr. Javier Pinilla-Ibarz shares credible resources and valuable tips to help you become an educated and empowered patient.

Dr. Javier Pinilla-Ibarz is the Lymphoma Section Head and Director of Immunotherapy in the malignant hematology department at Moffitt Cancer Center. More about this expert here.

See More From The Fact or Fiction? CLL Series


Related Resources

Fact or Fiction? CLL Treatment & Side Effects

The Truth About Managing CLL Treatment Side Effects

The Truth About CLL Treatment Options


Transcript:

Patricia Murphy:        

Okay, well we’ve talked about a lot of treatment and side effects and myths. As an informed patient, I may want to go out on the internet and find out all I can about CLL. What should I be looking for? What should I be careful about when it comes to online awareness and health literacy?

Dr. Javier Pinilla-Ibarz:        

Very, very important topic that I love to really discuss with my patients. I always say that some patients kind of intoxicate themselves with multiple websites and with different backgrounds.

I think we – I do recommend them to really go to the websites, to the websites who really provide a very fair and really clean and important information. I would definitely – we were discussing about the Leukemia Lymphoma Society, CLL Society, Patient Power, to really – National Cancer Institute’s website, places that they have very well filtered information that we can really give to the patient. There is no doubt there’s many others not in this list, but I think we always have to be aware that there’s other websites that may not really provide really, really a good information or may really confuse our patients. So, I like to always really go to the sources that I really trust the most.

Patricia Murphy:

Yeah, so reputable sources and always checking with your doctor, obviously, about things that you’re considering.

Dr. Javier Pinilla-Ibarz:        

Absolutely. Absolutely. I always tell to my patients, “You go there, you look at that, you read, but then after that you have a question. Come because sometimes you may have misconceptions.”

The Truth About Managing CLL Treatment Side Effects

The Truth About Managing CLL Treatment Side Effects from Patient Empowerment Network on Vimeo.

When it comes to information about CLL treatment side effects, what’s fact and what’s fiction? CLL expert Dr. Javier Pinilla-Ibarz addresses common questions and misconceptions.

Dr. Javier Pinilla-Ibarz is the Lymphoma Section Head and Director of Immunotherapy in the malignant hematology department at Moffitt Cancer Center. More about this expert here.

See More From The Fact or Fiction? CLL Series


Related Resources

The Truth About CLL Treatment Options

Which Molecular Tests for CLL Will You Need?

What You Need to Know About Developing CLL Research


Transcript:

Patricia Murphy:        

Let’s talk a little bit about side effects. You mentioned before that sometimes it’s hard to get patients to comply long term with treatment. What kind of things are they dealing with?

Dr. Javier Pinilla-Ibarz:        

So, there is many, many side effects, completely different depending on the drugs, right? So, every drug, as you can imagine, has different side effects. Obviously, the side effects that we discussing these days are the ones in relations to the patients who really have chronic therapies, right?

So, we talking about the BTK inhibitors, specifically ibrutinib. We know some of these patients may have a continuous bruising or really even rashes in the skin. Diarrhea may happen in the beginning. They, for example, may have issues with blood pressure, may have multiple issues that fatigue, joint pains, bone pains, polyarticular arthralgias. So, all of these things that some of them they are acute. Obviously, we’re talking about arrhythmias of the heart, the atrial fibrillation, that may need to be taken care of by cardiology consultation. However, there’s another things that are annoyance. I would discuss, right?

Annoyance that the long run may really affect quality of life on our patient, and obviously, it’s important to really have a really good and honest conversation with – between patient and doctors to see how we can really provide these. I mentioned those reductions or even switching drugs, sometimes is also appropriate in situations where we cannot really fix the problem with those reductions.

It sounds like these side effects, while challenging for patients, can be managed with medications. Are there ways to manage these side effects?

Dr. Javier Pinilla-Ibarz:             

Sometimes. Sometimes, they can be managed through certain medications. Sometimes they are chronic, and we cannot do nothing about. It’s the reason the dose reduction maybe is the best thing.

Patricia Murphy:        

Yeah, yeah. Okay, here’s another fact or fiction game we can play about side effects. “There is nothing that can be done for my side effects,” and we kinda talked about this. “What about fatigue? What can I do about my fatigue?”

Dr. Javier Pinilla-Ibarz:

That’s actually a problem, a problematic one. I think – one of the things that I discuss with my patients sometimes, inpatients and other populations of patients with other comorbid conditions, sometimes, and I don’t say that always, fatigue can really be produced by multiple things. So, we always also emphasize the fact that they need to be seen by private physician to make sure there is no other issues concerning the fatigue, classical in diabetic patients. Something in other patients with other cardiac conditions, right?

However, the truth is that fatigue is one of the main issues in CLL, sometimes happening before therapy or after therapy, with or without according continuous therapy. So, maybe fatigue is one of the big ones and is one of the ones that we really, really hear from our patients very, very often. We may really, as mentioned before, trying to do an adjustment of the doses, but in times of management, that I would say is a challenging one.

Patricia Murphy:        

It’s a tricky one. Sure. How about this one? “There’s an increased risk of secondary cancer and skin cancer from chemo.”

Dr. Javier Pinilla-Ibarz:        

Well, secondary cancer is something that we see very commonly in patients with CLL. So, CLL by themself with no therapy can really predispose patients to have high incidence of secondary cancer. We know this for a long time. How chemotherapy or even the new strategies such as BTK inhibitors or monoclonal antibodies or even – can’t really change that. We don’t know.

What we know is that our patients live longer with these new strategies. So, the question is, one of the hypotheses could be that those patients, because they live longer, they have more chances to develop cancer. Skin cancer is extremely common in CLL patients, very, very common. And always the argument is that, “Well, maybe the immunosuppression due to the leukemia condition, maybe they predisposed to that. The question is, how drugs really eradicate or control a disease can affect this incidence. That’s something that we don’t know.

There’s some anecdotal evidence that some patients, after getting certain therapies, may really have more of this skin cancer. Other patients do better. Still, it’s hard to really generalize.

Patricia Murphy:        

Sure. This one kinda gets back to the doctor-patient relationship. “I shouldn’t bother my team with side effects.” 

Dr. Javier Pinilla-Ibarz:        

Well, obviously there’s a reason we follow patients. We follow patients on a regular basis to really see how they’re doing, what kind of side effects they have, what they are doing. I was mentioning that with fatigue, we may not do much.

Some cases when the patient has with arthritic inflammation of the joints, that we have seen, well, steroids may – for a short period of time – may work. Obviously, oral pains, we still can really prescribe some Tylenol or things that can really improve that pain. For the diarrhea, many things to do. For the cramps for example also, we CoQ10, a calcium supplement, so it’s always seems that we can really introduce, obviously, for the nausea, something easily to treat.

So, I think the best thing is to really have the regular visit with the doctor and discuss. I always really tell my patients always, write it on a piece of paper the things that they need to ask because many, many times, with the rush of the clinics, patients really forget about the really important thing what they come in for.

The Truth About CLL Treatment Options

The Truth about CLL Treatment Options from Patient Empowerment Network on Vimeo.

When it comes to CLL treatment information, how can you separate fact from fiction? CLL expert Dr. Javier Pinilla-Ibarz tackles common questions.

Dr. Javier Pinilla-Ibarz is the Lymphoma Section Head and Director of Immunotherapy in the malignant hematology department at Moffitt Cancer Center. More about this expert here.

See More From The Fact or Fiction? CLL Series


Related Resources

The Truth About Managing CLL Treatment Side Effects

How to Learn More About Your CLL?

CLL Treatment: What Are Your Current Options?


Transcript:

Patricia Murphy:        

Let’s play a little fact or fiction game. I’ll tell you some of the things we have heard from patients with CLL, and you can tell me if it’s fact or fiction.

Dr. Javier Pinilla-Ibarz:        

Sure, absolutely.

Patricia Murphy:        

Here we go. First one. And I think we’ve already solved this, but I’ll just say it’s a concern of patients. “You have to treat CLL right away.”

Dr. Javier Pinilla-Ibarz:            

That’s not true, as I mentioned before, and I tell you, most of the patients will really come really scared into our work clinics and with a very high anxiety levels do not require therapy. So, I think it’s important. So, it’s very specific research. So, most of the people are – many people think that because their white blood counts continue to raise, this is the criteria for therapy, while it’s a very specific reasons of doubling time, but really, really relatively rare.

So, it’s relatively rare to be – need therapy for count or high count. And most of the people has high blood counts, they don’t feel it. Besides that, I think the emphasis is that if the patient needs therapy, well then, they need therapy. But they already anticipate that.

Patricia Murphy:        

Yeah. Okay, here’s another one. “Watch and wait can go on for years, and I may never need treatment.”

Dr. Javier Pinilla-Ibarz:     

You’re right. So, there is a special population of patients, mainly with certain characteristics such as, for example, 13q by FISH, 13q deletion by FISH, and IGHV mutation in heavy chain immunoglobulin, those groups of patients that is the classical ones that not all of them, but some group of them, may never require therapy, and there is patients in my practice that have been followed for years and years, 10, 15, or even 20.

Patricia Murphy:        

Man, that’s very interesting. How about this one? “Chemotherapy is the only available approach. One size fits all when it comes to treatment options.”

Dr. Javier Pinilla-Ibarz:     

Well, as I mentioned before, at length it’s not really chemotherapy. I wouldn’t say that chemotherapy is not an option these days, but however, with introduction of the new therapies, I think it’s moving away. It’s moving away to the therapy for CLL patients. And I think – I have to admit that we really, with the incorporation of these time limited therapies that I discussed before, chemoimmunotherapy is using less and less.

In the community, maybe because the incorporation of the new drugs it takes longer, it still may be used, and they may be used, but definitely in academic institution, I can tell you for sure, chemoimmunotherapy is almost gone.

Patricia Murphy:        

That’s a great point about community care. That’s a great point. So, as a patient, I may be able to look into more therapies if I ask my doctor, perhaps?

Dr. Javier Pinilla-Ibarz:         

Oh, absolutely. Absolutely. I think many doctors in the community and academic institution, they know that, but obviously, I think patient with CLL need to understand that there’s multiple options today, right? And another thing that you said, that chemoimmunotherapy is the only option, it is not really the right answer for our patients, right? There is no doubt it is an option, but there’s many others that need to be discussed with our patients to see how we gonna fit those different therapies for a specific patient as was mentioned, try to customize it, try to really adopt the different goals and really, really, outcomes for each individual patient.

Patricia Murphy:        

Yeah, I think we tackled this one a bit, but it’s probably worth mentioning again. How about this one? “I have to take inhibitor therapies forever.”

Dr. Javier Pinilla-Ibarz:     

Forever. That’s right. BTK inhibitor, I mentioned before, and mostly – all the BTK inhibitors, even the PI3K gamma inhibitors that they are proving second line now, they are being described – or they are being studied that they are taking anti-disease progression, or an acceptable toxicity, right? So, that’s the reason. So, maybe we’d say, “Well, on remission. Can I stop therapy?” Well, we do not recommend that because the data that we have from the clinical trials, patients continue therapy. And we note, as far as patient continue therapy, patient gonna do well.

So, the question is, what happens if you stop therapy? Well, we know that some patients may really have a relapse very, very fast, we call flare, classically happening in the lymph nodes – tumor flare – while other patients may really take longer to really have relapse.

So, we cannot – it’s very, very hard to really advise, and it’s something I do not advise, to stop therapy because we don’t know how the patient’s gonna really behave. However, there’s no doubt in certain situation when patient may have toxicity, chronic toxicity, patient may discontinue the drug. Some of these patients, they have been switched to another strategy, or some of them decide to say, “Okay, doctor, leave me alone. I wanna recover, and then after that, we’ll see if I really want to get in something else or I want to wait until my disease come back.” So, some take different strategies.

Patricia Murphy:        

All right, one more. “It doesn’t matter if I miss one dose of oral therapy.”

Dr. Javier Pinilla-Ibarz:     

Well, there is no doubt that the compliance is always a big issue on chronic therapies, oral therapies, and we really emphasize the importance to really, you know, give these drugs in a daily basis as being prescribed.

No doubt that there’s two issues here, the financial toxicity, the fact that some patients may really have a very high copayment, so they may want to skip doses to save money. That’s really, really unfortunate, but happen, right? The second one, obviously, is people who may really have significant side effects of the drug and may not want to retake the drug.

So, I think these things that need to be discussed with the providers, with doctors, to see how better we can really manage these situations. Let’s say an intolerance, maybe adjusting the dose, dose reduction. In financial toxicity, it’s a challenge, right? We try to help our patients, multiple foundations, Leukemia Lymphoma, many others, but I have to really say, sometimes this may not happen. So, it’s one of the big frustrations in some patients and doctors when we encounter this situation.

Patricia Murphy:        

It really stresses the importance of a doctor-patient relationship.

Dr. Javier Pinilla-Ibarz:  

Absolutely, absolutely. But once again, I think we always discuss about compliance. I think compliance is very, very important for the success of any therapy, so we definitely support the fact that patients should really take the drug as prescribed.

Patricia Murphy:        

Totally. What else do you hear from patients? Anything that you hear that you feel like you have to bust some myths about when you’re talking with your patients?

Dr. Javier Pinilla-Ibarz:  

Well, as you can imagine, in the – doing the phase of active surveillance, and because patient is really quite scared, they looking for any alternative medications or even therapies that they are out there that they think are gonna save their lives, right?

And although I quite liberal with things, we always pay attention to some of these things that are likely to really have any effect and sometimes may be deleterious for the health of patients, so I always really make them aware that there’s very, very few things that are being tested, and there’s not much evidence that any of the alternative medicines that we have really out there can have any influence.

Everyone referred to the green tea extracts as something that is being described in the literature with curcumin, so these the couple of things that we may really give to our patient as a way to feel that they are doing something because I think it’s the frustration of the patient that they have to wait. They are in surveillance, but they are not doing nothing.

However, my best advice to my patient is to really try to really get in a very good and healthy lifestyle, right? To really prove, you know, nutrition in the ways that everyone knows but very few people does, exercise as possible, and try to really keep themselves as healthy as possible because we know that there’s other things that can happen, for example, infection is another thing that may also really, really complicate the active surveillance strategies that we really recommend.

Patricia Murphy:        

Right, right. What about clinical trials? Do you hear misconceptions from your patients around enrolling in clinical trials?

Dr. Javier Pinilla-Ibarz:  

For sure. For sure. It’s very, very classical. People always – many patients, unfortunately, they think a clinical trial is an experimental drug that has never been proven in patients. And although it could be true, most of the time, they are a drug who has a very, very important background. They have an important, you know, scientific evidence why we try them. It’s true on phase one trials, they really are tested for toxicity. Phase two trials, it’s for somewhat efficacy. However, I think we need to discuss specific basis what kind of trial.

Another important misconception is most of the people think they really gonna get placebo. The famous placebo versus drug issue. It’s very rare to see placebo trials in oncology, right? Most of the patients, what they’ve been randomized, another kind of bad word for patients. “Oh, I been – I gonna be randomized in the placebo.”

Well, No. 1, placebo arm is very rare, and the randomization is standard of care versus something that we believe gonna improve the standard of care. Let’s say ibrutinib in comparison with ibrutinib plus something else, okay? Something else, okay?

Which Molecular Tests for CLL Will You Need?

CLL Treatment: Which Molecular Tests Will You Need? from Patient Empowerment Network on Vimeo.

 Following a CLL diagnosis, which molecular tests are essential? Dr. Javier Pinilla-Ibarz reviews the types of tests available and their potential impact on prognosis and treatment.

Dr. Javier Pinilla-Ibarz is the Lymphoma Section Head and Director of Immunotherapy in the malignant hematology department at Moffitt Cancer Center. More about this expert here.

See More From The Fact or Fiction? CLL Series


Related Resources

How to Learn More About Your CLL?

Tips for Determining the Best CLL Treatment For You

What You Need to Know About Developing CLL Research


Transcript:

Patricia Murphy:        

Yeah, yeah. Let’s talk a little bit about molecular testing for a moment. What can you learn from molecular testing? When will that –

Dr. Javier Pinilla:        

Yeah, molecular testing is quite important. I think that there’s different tests that we really perform, right? NCCN guidelines, iwCLL, has really, really laid out the fundamental tests that we need to provide, or we need to really do at least – they say “at least” when the patient requires therapy. Why? Because obviously, it’s gonna be an important part of how we are going to see the patient and how the patient is going to behave, even during therapy.

So, we are discussing about obviously FISH tests, FISH tests, that’s a chromosomal analysis that is very, very classical and has been done for years for classical chromosome abnormalities, 11q, 17p, that is the bad, always what you think that is the bad one. It’s true that it may even, with the new therapies, has shorter period of responses, 13q, trisomy 12. So, we set out with this one.

Besides that, what is the other important thing? The mutation status of the heavy chains in the immunoglobin, the IGHV mutation status. Very, very important because even when the new therapies made no difference, while we know patient with unmutated immunoglobulin may really have different outcomes in the long run. The truth is that with ibrutinib, for example, or venetoclax, we don’t see the difference in outcomes, but still we need to see what’s happening in the long run. So, the good news is that with the new therapies, we don’t see difference that we used to see with chemotherapy that unmutated immunoglobulin patients, they may really fail more often than mutated ones.

However, I think it’s something important that we need to implement. Last, but not least, is the TP53 mutations. I think it’s something that it should be implemented, and I think the teaching point is that TP53 mutations, maybe also NOTCH1 or SF3B1 – other mutations that may really give to patients a bad outcome in the long run, at least with the chemoimmunotherapy, it’s something that also can be done, or at least it’s something that will be important to really incorporate to our patients. Not in all the cases, but in some, TP53 for sure. 

Tips for Determining the Best CLL Treatment for You

Tips for Determining the Best CLL Treatment for You from Patient Empowerment Network on Vimeo.

CLL expert Dr. Javier Pinilla-Ibarz explains how a treatment regimen is chosen, stressing the important role that patient preference plays in making a decision.

Dr. Javier Pinilla-Ibarz is the Lymphoma Section Head and Director of Immunotherapy in the malignant hematology department at Moffitt Cancer Center. More about this expert here.

See More From The Fact or Fiction? CLL Series


Related Resources

Fact or Fiction? CLL Treatment & Side Effects

The Truth About CLL Treatment Options

CLL Treatment: What Are Your Current Options?


Transcript:

Patricia Murphy:        

What are the things that you’re thinking about when you’re considering treatment for your patients, when you’re making those decisions?

Dr. Javier Pinilla:        

Well, I think it’s important to really notice and to really understand my patient, is that we need to provide education. We need to provide education, and obviously, every – many, many patients ask me, “Doctor, what I should do?” Right?

But I think it’s very important for me to understand what is the goals of every patient, right? Age, comorbid condition, way of life, people like to travel versus staying in the same place. So, I try to really educate about the options because we are very lucky that we have multiple options. We also understand – so, what is gonna be the difficulty is to really get therapy A versus therapy B and how much control or monitoring they require, and finally also, as mentioned before, to try to customize therapies for different patients.

I always say that – we discuss in the beginning that not everyone with CLL requires therapy at the beginning. However, when people require therapy, not everyone requires therapy for the same reason. Some people may require therapy because they are anemic, okay, extreme anemia. Why? Because their bone marrow cannot really produce enough red cells or even platelets. Why? Because they is full of CLL cells.

So, those patients in my opinion, they can really do very well with strategies as BCL-2 inhibitor in combination and alone. Why? Because these drugs is able to truly and very, very efficaciously really eliminate the CLL.

So, we go into another scenario. Patient with very high, bulky lymph nodes in the neck, axillary and abdominal, for example, with enlarged spleen who may have very, very severe B-cell symptoms. We note that we cannot apply anything. There’s no doubt that introduction of Bruton’s tyrosine kinase inhibitor or even – is extremely successful in reducing the symptomatology very fast and shrinking the lymph nodes in a very short period of time. So, again, I would say that it’s black and blue or like a black and white and – different.

Patricia Murphy:        

Black and white.

Dr. Javier Pinilla:        

Black and white. Thank you. So, but the truth is different patients may require different strategies, and obviously, patients’ preference are really, really important.

Patient may come back to be in therapy for life, maybe patient maybe don’t care. Patient may really, really, really want specifically shorter therapy. So, I think we need to really understand that in the options and start to work with them, also depending on the presentation on the needs for therapy.

What You Need to Know About Developing CLL Research 

What You Need to Know About Developing CLL Research from Patient Empowerment Network on Vimeo.

Are there CLL research advances that patients should be aware of? Dr. Javier Pinilla-Ibarz outlines the latest in CLL treatment and research.

Dr. Javier Pinilla-Ibarz is the Lymphoma Section Head and Director of Immunotherapy in the malignant hematology department at Moffitt Cancer Center. More about this expert here.

See More From The Fact or Fiction? CLL Series


Related Resources

Which Molecular Tests for CLL Will You Need?

CLL Treatment: What Are Your Current Options?

Tips for Determining the Best CLL Treatment For You


Transcript:

Patricia Murphy:        

It sounds like we have made tremendous progress with CLL. What kind of clinical trials should patients be investigating? What are they – what’s out there?

Dr. Javier Pinilla:        

Well, there is no doubt that a lot of people until now were really looking for venetoclax front line clinical trials. Now it’s available in the clinical practice. However, we’re still trying to figure out combination of drugs, right? For example, in this case, I have mentioned we have a very good drug like ibrutinib in front line. We have all the BTK inhibitors that are coming up such as acalabrutinib. We have other PI3K inhibitors that are being not very successful in the front line, right to the second line, like idelalisib, duvelisib, even copanlisib.

And other drugs, like I said, ibrutinib. So, we have a plethora of drugs, really available as clinical trial outside the ones that have approved. However, one of the things that we are really starting to explore in the recent year is how we combine all these mechanisms of action. The most typical combination that we are really now under trial is the combination of two or three drugs, as happens in many other forms of cancer.

So, this combination of these three – some of, two or three of these drugs, is very, very well studied now in an integral trial, the ECOG, the alliance trial, we gonna start to see those trials, and of course, our patients in front line will have the opportunity. Besides that, we gonna see more and more trials are going to combine patients who are already in chronic therapy with ibrutinib with a second drug, with the goal to in the future be able to discontinue therapy because it’s one of the issues that ibrutinib has these days. Patient takes the drug for life.

CLL Treatment: What Are Your Current Options?

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

Dr. Javier Pinilla-Ibarz reviews current approaches to treating CLL patients, including targeted therapies and the role of watchful waiting in newly diagnosed patients.

Dr. Javier Pinilla-Ibarz is the Lymphoma Section Head and Director of Immunotherapy in the malignant hematology department at Moffitt Cancer Center. More about this expert here.

See More From The Fact or Fiction? CLL Series


Related Resources

The Truth About CLL Treatment Options

Tips for Determining the Best CLL Treatment For You

Which Molecular Tests for CLL Will You Need?


Transcript:

Dr. Javier Pinilla        

Well, right now, most of the time – in fact, it’s the most common scenario that we encounter on a weekly basis. Patients get diagnosed with leukemia. That is really a bad word for most of the patients, and they really come to our clinic as a very, very scared and anxious about the diagnosis. However, we don’t really treat most of them. Almost 70% of the patients don’t require therapy to start with, right? So, as you may know – and many, many people who really gonna watch this program will know that we really do active surveillance and watchful waiting.

For many, many months, sometimes years, and there is some specific criteria that patients need to really accomplish to really start therapy. What are those? Well, developing an anemia, low platelets, large lymph nodes that really produce some symptoms, B-cell symptoms like, you know, night sweats, drenching night sweats, fevers, weight loss, lack of appetite, and fatigue, and so on, right?                                   

So, there is no doubt that there is reason why we need to treat. Regarding the treatment of this condition, well, we have been lucky because in the last, let’s say, seven, eight years, there has been a plethora and really large and new advances in the therapy for this condition. We went from the very old chemotherapy strategies in the oral form or even the intravenous form, chlorambucil, a very old drug, more than 50 years in the ways, through fludarabine, Cytoxan, even bendamustine. These last three were used in combination with what we call immunotherapy.

So, chemoimmunotherapy was very, very popular, let’s say, 10 years ago after the chlorambucil went away as a really not very optimal therapy. So, the main standard of therapy for CLL for many years in combination of chemo and immunotherapy with really good results. However, patients unfortunately in many situations will really relapse.

So, we always talk to the patient that when the times of therapy comes, we gonna really put the patient in remission in many cases. In some cases, it’s not really a full remission. It’s a partial remission. But this, most of the time, happen for a certain period of time upon after the patient will require a new therapy. That was kind of the dilemma and the things that we are being really experienced in for years.

However, the introduction of target therapy, that was really a revolution in CLL. That’s happened in many other cancers, including other leukemias, like a chronic myeloid leukemia. These new drugs really came to really change the paradigm, to really fix the duration of chemoimmunotherapy to really taking pills, we can really get a patient in a remission, or at least in a very good control of the disease for a longer period of time as soon as the patient continues to take the drug.

Obviously, we’re talking about BTK inhibitors that really, really extremely popular, and truly, today, a standard of care for any patient who has newly diagnosed CLL who requires therapy in any form, high risk, low risk, older, younger, with comorbid condition, without. This is very well reflected in NCCN guidelines with category 1, in this case, to the most common.

the case I ready to try. So, we know that. We know that, and we really see patients who really enjoy these drugs for a long period of times. However, obviously, this always come with another issues, like intolerance, and in some other cases, progression, right?

So, it’s – BTK mutation has been described and has been seen in high-risk patients. So, this being the standard, and really, we enjoying this, but we have a very recent, last May, a new drug approved. It was already approved for patients who really failed other therapies but now also, we have the ability to get this drug as an initial therapy.

This therapy, in this case, is called a BCL-2 inhibitor. The name is venetoclax, in combination with another immunotherapy I mentioned before that was classically used with chemo. In this case, venetoclax, BCL-2 inhibitor, is combined with obinutuzumab, a drug with a very powerful anti-CD20 monoclonal antibody.

What really has brought us this new strategy? Well, it’s coming back that the paradigm, as mentioned before, changed from fixed duration with chemoimmunotherapy to long term durability for pills, but now, we have also the opportunity to discuss with patients the possibility to really offer them, in certain conditions, not for everyone – again, we need to really understand that we need to customize the therapy for patients, right?

But this new combination really, really will allow us to – many patients who don’t want to stay in therapy for life, so we can really offer back time-limited therapy with substituting the old chemotherapy by this drug called BCL-2 inhibitors, venetoclax. They work very similar to chemotherapy, and they are extremely effective, you know, cleaning or at least reducing, and sometimes completely eradicating most of the CLL cells in the bone marrow of patients with CLL.

However, we still no have longer follow-up in the front line. We have a longer follow up in the second line when patient has failed chemo or other drugs with these combination with venetoclax. In the front line, the data are very, very good, but the – it’s relatively short follow-up. So, patients receive care for a year, and they stop. So now, we are following those patients. There was a recent publication in the New England Journal that really described this population with this trial called CLL 14, but definitely, we need to really continue to see how these data evolve as we have seen with a routine for many years.

We have already seven years follow up on ibrutinib, and it’s something that keep going, and this is what is gonna help us to understand who and what can really be given these kind of therapies, okay?

Fact or Fiction? CLL Causes and Symptoms

Fact or Fiction? CLL Causes and Symptoms from Patient Empowerment Network on Vimeo.

How do you decipher what’s fact and what’s fiction when it comes to chronic lymphocytic leukemia (CLL) causes and symptoms? Dr. Kerry Rogers shares updates in CLL research and tackles common questions and misconceptions.

Dr. Kerry Rogers is a hematologist-oncologist at The James Cancer Hospital and Solove Research Institute. More about Dr. Rogers here.

See More From The Fact or Fiction? CLL Series


Related Resources

Fact or Fiction? CLL Treatment & Side Effects

Overwhelmed By a CLL Diagnosis? Key Steps to Take

CLL Genetic Tests: How Do Results Impact Treatment and Care


Transcript:

Patricia:                      

Welcome to Fact or Fiction: CLL Causes and Symptoms. Today, we’re talking about chronic lymphocytic leukemia. We’ll debunk misconceptions about CLL causes and symptoms. I’m Patricia Murphy, your host. Joining me today is Dr. Kerry Rogers. Dr. Rogers, thanks so much for taking the time. Why don’t you introduce yourself?

Dr. Rogers:                 

My name is Kerry Rogers. I am a hematologist, and I work at the Ohio State University in Columbus, Ohio, and thank you very much for inviting me. This is one of my favorite topics – talking about chronic lymphocytic leukemia.

Patricia:                      

Fantastic. Well, before we get started, this program is not a substitute for medical advice, so please, consult your medical care team or you – before we get started, this program is not a substitute for medical advice, so please refer to your healthcare team with any questions.

Patricia:

Dr. Rogers, let’s just get a brief overview of CLL and how it progresses.

Dr. Rogers:                 

So, I’m sure everyone already knows that chronic lymphocytic leukemia is a chronic blood cancer of a cell called the B lymphocyte, and with the frequency that people are getting blood tests these days in the United States, the most common way that I see people diagnosed with this at this time is actually just having an increased white blood cell count when they went to get routine blood counts.

So, it seems like the majority of people being diagnosed are diagnosed at a time when they’re not actually having symptoms from the disease, and maybe everyone already knows or not, but the way that’s managed is that the disease is actually just monitored until some sort of what I like to call “problem” from it develops.

So, I’ll go over what the problems are that can come along as the CLL progresses, but it’s important to realize that there’s many people alive and living with CLL doing very well and not having any problems from the disease yet, and I’ve seen a couple people that have had this disease longer than I’ve been a doctor, and one person that almost had this longer than I’ve been alive with no problems from it.

So, developing something from CLL that’s gonna need treatment is not universal. So, as the – for the majority of people, though, CLL – over its natural history – will go on to progress to cause what I like to refer to as “problems” from it. Some people call them “treatment indications.”

So, when problems are developing is about the time you consider treatment before you get really sick from it, and there’s a couple main ways that the CLL can cause problems. One is that the CLL can build up in the places where those cells live, which is the lymph nodes, so people can get really big lymph nodes in their neck, in their groin area, sometimes inside the body, causing problems. And, lots of people have small lymph nodes that aren’t causing problems, and that’s okay, but if they become really big or problematic, then it’s time to do something about them.

The cells can also build up in the bone marrow, so the bone marrow produces all your healthy, normal blood cells that go into the blood and have a lifecycle in the blood. So, if your bone marrow fills up with CLL cells, then you can’t produce the regular,  healthy blood cells, and it’s time to do something about the CLL.

Sometimes, the white count can get really high, and that’s not always a reason to do something, but most people do see – over the natural history or course of having CLL – their white blood cell count and lymphocyte count increases, and there’s not actually a firm number where you say, “Boy, you hit X number, it’s time to treat this,” but if the count is increasing rapidly, then usually, you want to treat this before it increases so much that you develop an issue from that. And then, the last category of things that happen with CLL that’s a problem from it are what we call constitutional symptoms.

So, this can be fatigue that’s limiting your activities, like I took care of someone that was too tired to get the mail from his porch due to CLL. He’s doing great now, but that would be a problem. Sometimes drenching night sweats or an extreme weight loss – and, I’m not talking about people that do Atkins diet lose weight, I’m talking about people that are eating everything and losing weight just because of the CLL.

And, the reason this happens that – CLL is a cancer of B lymphocytes, which are immune system cells, so they can release some of the same chemical mediators that your immune system releases for an infection, and that’s what causes some of those symptoms. But, the main things that progress over the course of having CLL are increasing lymph nodes, lowering of your healthy blood counts due to increasing CLL in the bone marrow, the white count can go up rapidly, or people can develop really problematic constitutional symptoms from it.

Patricia:                      

Let’s talk a little bit about how CLL is staged, Dr. Rogers.

Dr. Rogers:                 

So, unlike most cancers, where CLL is staged with CT scans or PET scans, the staging for CLL is actually remarkably simple, and I really like this because it limits the amount of testing you have to do for people, especially the people that might be just monitored for their CLL or observed. You don’t wanna put them through a lot of intensive testing they don’t need. So, the only two things you need to properly stage CLL are a complete blood count and a good physical exam.

So, in the United States, we use something called RAI staging, which is R-A-I staging, and before I launch into what it is, I will just say that even RAI stage 4 CLL is very treatable, and people do well for many years, so this is not the same as when you think about lung cancer or breast cancer staging, where stage 4 is a much worse spot than stage 1. The staging for CLL – all of it is still very treatable.

So, RAI stage 0 is when you only have an increase in lymphocytes, which is the CLL cells in the blood. Stage 1 is when you have increasing lymph nodes in addition to that. Stage 2 is an increased size of the liver or spleen. And then, if someone has anemia from CLL, then it’s stage 3, and stage 4 is if you have low platelets from CLL. So, 3 and 4 are indications that the bone marrow’s not working well due to CLL.

Patricia:                      

Dr. Rogers, it seems like CLL is a very manageable disease. What are you considering when you’re making a prognosis with a patient?

Dr. Rogers:                 

So, for many people, CLL is a very manageable disease. Like I said, some people have had CLL longer than I’ve been a doctor and have needed no treatment for it. However, there are people with CLL that go on to have a lot of difficulty from it, including not doing well with more than therapy or needing really new, advanced therapies, like something called CAR T-cell therapy.

So, for any individual person, you can never say how it’s gonna turn out for them, but we do use our experience taking care of lots of people with CLL to make an educated guess as to if this person’s gonna be someone that’s gonna expect to need a lot of treatment in their lifetime, or maybe no treatment in their lifetime.

And, the main things we look at in addition to just the staging or are they having symptoms or problems from CLL yet is molecular testing. So, these are genetic tests just on the cancer cells, so they’re not genetic tests that other people in the family get tested for, it’s just changes in the cancer cells, so that can give us a guess as to how long before people need treatment and how well they’ll respond to treatment.

And, I know a lot of people are probably already familiar with this, but there’s a particular chromosome change you can test for called deletion 17p, and that predicts a shorter time to needing treatment, needing more treatments in your lifetime, maybe going on to needing those advanced treatments like CAR T-cell therapy.

It used to be recommended that people with 17p get regular like-donor stem cell transplants, which, in some cases, is still done. And then, on the other end of the spectrum, there’s a chromosome change called deletion 13q, which predicts that in many cases, people don’t need treatment for many years and do very well. So, there’s a panel of chromosome changes that can predict where people are gonna fall on the spectrum.

The other chromosome change that’s become important is something called complex karyotype – and again, this is just in the CLL cells, but the karyotype is the arrangement of the chromosomes and these – the other tests I was talking about are chromosome changes picked up with a test called FISH. This is just looking at all the chromosomes, what they look like, and if there are three unrelated genetic abnormalities are more, it’s something called a complex karyotype, and it predicts people will fall in this category of needing more treatment or having more things to do with their CLL in their lifetime rather than not.

And then, the third thing that is really important is something called – and, this is gonna sound long – but, it’s immunoglobulin heavy chain gene mutational status, and mutations in the immunoglobulin heavy chain gene occur normally as these B cells mature, so people that are mutated have more mature cells that became CLL, and people that are unmutated have less mature cells, and people who are mutated that have more mature cells tend to have fewer problems from CLL in their lifetime, and there’s a few implications for CLL treatment for that category.

So, I kind of take all those things into consideration, and then, the other thing that I think is important to consider is newer molecular testing, but that’s still in development, so I think I’ll just end there for now in what I take into account.

Patricia:                      

I did want to ask one follow-up. Dr. Rogers, how often do you like to check in with your patients with CLL?

Dr. Rogers:                 

Oh, that’s an excellent question, because I think it really depends on how they’re doing.

So, people that have had a lot of changes in their CLL, like the white counts increasing, healthy blood counts going down, lymph nodes changing – then usually, I see them back more often, so I even see someone maybe six or eight weeks later if they have a lot of changes. And then, generally, people who are having changes in their CLL are taking treatment for CLL; I’ll see them at least every three months.

However, like I said, there are people who have had this CLL for decades with no changes in how their disease is, so those people I’ll see every six months, or even sometimes once a year, especially if it’s been 10 years and nothing has changed with the CLL. Even though I like them and enjoy seeing them, I’m sure they have things they’d like to do rather than coming to see me.

Patricia:                      

Here we go. Dr. Rogers, let’s talk about facts and fiction around CLL. Here’s what we’ve heard from CLL patients. Are these fact or fiction? “Exposure to pesticides caused my CLL.”

Dr. Rogers:                 

So, this is a very difficult one, and I will preface this by saying I’m not actually an expert in environmental exposures. I am more an expert in CLL management. But, there is some evidence that exposure to pesticides, including Roundup, increases the risk for developing non-Hodgkin’s lymphoma, and there’s a class-action lawsuit against Roundup that my patients keep asking me about.

I think it’s really hard to say for any one person whether or not their cancer is caused by pesticide exposure. If it’s someone that sprayed Roundup in their garden a couple times, then no, I wouldn’t think so. If it’s someone that was bathing in it regularly, exposed to it on the farm all the time, then it might have contributed, but there’s usually more than one thing that goes into someone getting CLL, so I would never plant the entire blame for something on one particular exposure, but I do think it’s quite possible that pesticide exposure can increase a person’s risk for developing CLL and non-Hodgkin’s lymphoma.

Patricia:

This is probably applicable just to veterans. “I was exposed to Agent Orange, and it caused my CLL.”

Dr. Rogers:

So, the same stuff I said about pesticides applies to Agent Orange, but Agent Orange can be a factor in developing CLL. It is in the VA list of diseases associated with Agent Orange exposure. So, for anyone that was exposed to Agent Orange that developed CLL, I would really encourage them to go to the VA and get their Agent Orange intake interview because they are likely entitled to VA benefits because they have CLL and were exposed to Agent Orange.

Patricia:                      

Do you hear that often from your patients who were exposed to Agent Orange?

Dr. Rogers:                 

That they’ve gone to the VA? Yes. Actually, I have a couple people that – many of these people get care at the VA, which is also great, but I do take care of a couple of people who have VA benefits due to Agent Orange exposure who have CLL for sure.

I also have a couple people that, despite the fact that they were exposed to Agent Orange, didn’t feel like going to the VA and seeing if they could get benefits, and I think that’s very reasonable, too. Whether or not people wanna do that is an individual decision, but is definitely on the list of Agent Orange exposure-related diseases. And so, the VA could provide care, medications for CLL, and in some cases, other financial benefits, so for anyone who would like, I think contacting the VA if you have CLL and were exposed to Agent Orange is not a bad idea.

Patricia:                      

How about this one? “CLL is only a disease of the elderly.”

Dr. Rogers:                 

Oh. Well, that one is definitely not true. So, CLL is not really a disease of children. I’ve never seen someone under 18 with it, and of course, the median age of diagnosis is somewhere between 65 and 70, sort of around 65, so that means that there’s a lot of people less than 65 living with CLL.

I’ve seen people as young as 20, I’ve seen some people in their 30s, I see many people in their 40s and 50s, and also, part of this question is what do you consider elderly? I don’t really know that I consider people in their 60s elderly in many cases. So, people in their 90s are usually willing to accept that they’re elderly, but people in their 60s, often, I wouldn’t call them elderly, and I know you draw these age numbers to say you’re a senior citizen, but there’s more things that contribute to the word “elderly.”

So, I guess what I’d say is this is – CLL is definitely not exclusively a disease of the elderly. There are many people in their 40s living with this, and I’ve seen people as young as their 20s, and then, also, you gotta figure out for yourself where you’re gonna draw the line and say “elderly.”

Patricia:                      

Sure. How about this one? “CLL is genetic, and my children may inherit it.”

Dr. Rogers:                 

So, this is a very difficult question. Instead of saying CLL is genetic, I think what I would say is that CLL is heritable, meaning it can run in families.

And, the rough estimate is that 1 in every 10 people that are living with CLL have someone in their family that will also get CLL, so we know that it does run in families – not in every case, but many cases – and I think at least in terms of people I’ve seen with this, people come and see me, and they either say, “Oh yeah, sure, my cousin, my uncle, my parents, my brother – everybody had CLL.” Or, they’ll say, “Really? Someone else in my family could get this?” So, it becomes pretty clear who’s gonna have it in their family and who’s not, but it does increase the risk of your family members getting CLL.

The interesting part of that is as a CLL community, I think we have not done a very – or, we have not been able to pin down a gene that causes it. So, if you think about breast cancer, colon cancer, you can say, “Oh, someone has a BRCA mutation, the family needs to get tested, we can do something to avoid your kids getting breast cancer.”

But really, with CLL, they’ve done a lot of research looking at family cohorts – and, by “they,” I mean not me specifically, but other CLL researchers have done this – and really have not identified anything that’s saying, “Oh, if you have this gene, you’re gonna get CLL, you’re at risk for CLL,” so, we can’t say it’s genetic and there’s one gene it’s pinned on, although it might be genetic based on a constellation of genes or a gene we haven’t identified. So, I think that’s kind of interesting.

The other thing that I’ll say that’s really important when thinking about whether or not your family could be at risk for CLL is that even people that have very what we call unfavorable or high-risk CLL, with something like deletion 17p, other family members that have CLL end up having a pre-CLL condition called monoclonal B lymphocytosis, or 13q CLL, or 11q CLL, so they have a completely different genetic feature for their CLL, even though you can tell they’re in the family as people with CLL.

So, it’s not that the CLL genetic factors we use to predict how you’re gonna do with it are inherited throughout the family, just the risk for getting CLL. I think that’s important to realize.

The other thing is that unlike breast cancer, where you say, “Oh, this is in your family, you should get breast MRIs, you should consider a prophylactic mastectomy,” there’s not a good screening system for CLL, and since when it’s diagnosed, it’s observed, and there’s no known way that we have to prevent it, it’s not like you have to go and get your entire family tested because we don’t have a genetic test, and a screening is not as beneficial as it is in breast cancer where you can get a surgery to prevent yourself from getting the disease. Does that make sense? Okay.

Patricia:                      

Thank you. What are some of the things that you hear from your patients that we haven’t mentioned?

Dr. Rogers:                 

About CLL?

Patricia:

About the way they got it.

Dr. Rogers:

Oh, the way they got it. Hmm. I think the most common things I hear from people that we haven’t mentioned are in either the exposure category, to things that aren’t known to cause CLL, or infections, like, “Oh, I had a really bad bout of influenza,” or “I got pneumonia, and then I got CLL.” I don’t know if these – I don’t know if any infections that are demonstrated to cause CLL.

Sometimes, the white count can go up when people have infections in response to that, because they’re still living immune system cells, so if people get diagnosed when they have an infection because they got their blood drawn or because their white count went up because they were sick, but that’s something common I hear. And so, it’s really hard to say, “Your bout of pneumonia isn’t why you got this,” but it is frequently how people get diagnosed with that, so I hear that sometimes.

Patricia:                      

What are the actual causes of CLL? What do we know?

Dr. Rogers:                 

So, CLL, like most blood cancers is – the way I like to think about it is that your blood cells are one of the most rapidly growing and dividing cells in the body.

You know how over the course of your lifespan, your skin sloughs off, your hair grows, you have to cut it? So, your blood cells divide and turn over within your body, and they’re really quite rapidly dividing, and when cells divide, they replicate their genetic material, and just because it happens so many times over the lifespan, they make mistakes and pick up mutations.

So, many of the mutations they pick up either cause that cell to die, which is fine, or cause your immune system to attack it as abnormal, which is fine. But, in some cases, the mistake or mutation they made when the cells were dividing causes the calls to become broken or mutated in a very specific way that makes them CLL. And, it’s probably not just one mutation; it’s probably a series of them that accumulate to cause CLL.

And so, some of these things are those things we test for in a FISH panel, like 17p is an abnormal genetic change that happened as these cells were dividing over the course of the person’s lifespan, but there’s probably more changes than that that go on, and eventually, the cells become CLL, grow out of control, and have the common features of CLL. So, that’s how I like to think about it.

And then, these questions of “Oh, did pesticides contribute? Did this contribute? Did Agent Orange contribute?” is really just about did those agents cause your cells to break or mutate more, or in a specific way that would make them CLL? So, a lot of things that cause cancers in general, and not just CLL or increased risks for cancers in general, are things that alter, break, or change DNA.

Patricia:

Dr. Rogers, we’ve talked a little bit about symptoms – fatigue, night sweats, swollen lymph nodes. How do you manage the symptoms of CLL?

Dr. Rogers:                 

That’s a good question. So, if people have enough symptoms from CLL that’s really impacting their life significantly, then I suggest they take a CLL treatment.

So, if people have big lymph nodes that are interfering with what they’re doing – like I said, that nice man that was too fatigued to get his mail off his porch – that’s a reason to do a CLL therapy, treat the CLL, and make those symptoms go away. The really difficult ones are when you’re not sure if someone’s fatigue is related to CLL.

So, there’s many people I take care of that are living with chronic levels of fatigue that are not enough to impair their daily activities much, and you’re not sure what it could be related to, so one thing I like to do for things that aren’t clearly severe CLL symptoms is try to figure out what else could be causing it. So, I know myself and many other physicians I work with closely that treat CLL – we think we might diagnose more people with sleep apnea than fatigue related to CLL, and getting your sleep apnea treated is very important. So, it’s always important to do a very thorough look to make sure that these symptoms are from CLL.

And then, in terms of milder fatigue, treating CLL won’t always make that better because people usually live with some chronic side effects from the treatment, and it’s really hard to improve on feeling really good. So, if people have some mild fatigue but feel pretty good in general, it can really only make that worse at some point. And, I find that people themselves find ways to manage. Some people who might be in the actually elderly category like to nap, especially if they can and they’re retired.

Younger people actually shockingly sometimes find moderate exercise helpful. And, I know a lot of people find moderate exercise helpful for other forms of fatigue. So, for people living with mild levels of fatigue, that is definitely – people have those strategies to exercise. A couple people really improved their nutrition and found it helpful. So, sleeping better, focusing on maximizing benefit from things you can do, is good.

In terms of night sweats that people get sometimes that aren’t too severe, usually, they find ways to manage with fans or things like that in the bedroom.

Patricia:                      

These sound like important quality-of-life conversations with your physician.

Dr. Rogers:

Definitely. And, I think any time people have symptoms, it’s always good to talk to definitely your hematologist, especially if you have CLL and you don’t know if it’s CLL-related or it could be, and then, also, your primary care doctor or your general doctor, because sometimes, they’re really good at thinking of what else could be contributing, and occasionally, it’s a back-and-forth before you really determine what’s causing this and if it’s CLL-related, but either way, feeling better is really important.

Patricia:                      

Sure. Let’s talk about symptoms a little bit more. Here are a few things that we’ve heard from CLL patients. Are these fact or fiction? “I shouldn’t travel if I have CLL, since I may get an infection.”’

Dr. Rogers:                 

I think that is fiction. So, I’ve heard this, too, and the way I like to think about it is if you’re expected to live with CLL for a very long time, you had better go out and do the things you want to do. This is not supposed to keep you a prisoner in your house. Now, if you’re in the middle of starting some sort of more intensive treatment for it, or less intensive treatment, but you started last week, that is not a good time to go somewhere where there are no hospitals – in the middle of the Pacific Ocean or to rural Africa. So, you’ve gotta be smart about those things, but you wouldn’t go to rural Africa the week after you had a heart attack, either.

So, I think for people who are doing well, living with CLL, but aren’t needing some sort of – in situation where they need a lot of medical visits and care right now, definitely travel. And then, yes, you can get infections when you travel, but you can get infections in your own neighborhood, and I don’t think that keeping yourself only in your neighborhood or where you live is really gonna help you live any better.

You do have to be kind of smart about it. So, if you’re gonna go somewhere where there’s malaria, go to a travel clinic. Make sure that you take the advice of the travel clinic. If you’re going to Houston, you probably don’t need to do anything special. If you’re going to Central America, then you might wanna go to a travel clinic. And, as you know, most people with CLL are instructed to avoid live vaccines, so you have to tell the travel clinic, “I’m going X place. What are the recommendations? I’m not supposed to get live vaccines.” Sometimes, they can recommend low doses of antibiotics to avoid this. They have practical ways to avoid it – for ticks, if you tuck your pants into your socks.

So, being cautious and taking care not to get infections is good advice, but I don’t think it really helps people to limit their travel. Does that make sense? If someone got a stem cell transplant or something, that’s a different category. I’m talking about most people with CLL.

Patricia:                      

Sure. Well, you mentioned the problem with live vaccines and patients with CLL. Should patients with CLL get a flu shot or vaccines? Because we hear from some patients – they say they shouldn’t.

Dr. Rogers:                 

Yeah. So, because CLL is a cancer of the immune system cells – B lymphocytes – it makes the rest of the immune system function differently than in healthy individuals. So, the benefit that people get from vaccines if they have CLL is actually less, so the – if you get a flu shot, it doesn’t decrease your risk of getting the flu the same way it would for a healthy adult.

However, it’s still a good idea to do because people with CLL live at a higher risk of infection, and the way I view it is you should take every opportunity to decrease your risk for infection because influenza is curable, and if you can decrease your risk even a little bit, I would do it. Now, live vaccines are a bit of a debate because people who are immunocompromised don’t get them. So, live vaccines are a live virus similar to the on that you’re being vaccinated against.

So, examples of live vaccine are the oral typhoid vaccine, the MMR vaccine – I know we’re having measles outbreaks in some parts of the country, so MMR is kind of off the table. There is an intranasal flu vaccine that’s live. It’s very hard to get these days and uncommon to be offered. So, I recommend people get all the vaccines they’re due as long as they’re killed vaccines.

There is now a new shingles vaccine called Shingrix, which is a killed vaccine. I’ve had many patients get that. We’re not sure how well it works in CLL; probably not as well as in healthy adults, but it is safe, so if you get your hands on it – it’s been on shortage – there’s no reason not to get these things. I do think for people that have had really severe vaccine reactions that’s always an individual conversation with your doctor.

Patricia:                      

Yeah, it sounds like it. How about this one? “I’m not experiencing symptoms, so I don’t need treatment.”

Dr. Rogers:                 

That may or may not be true. So, in some cases, especially if people are in monitoring or observation for their CLL, the goal is to start treatment before you get horribly sick, right?

So, in some cases, you’ll see that the changes in the blood really predict that someone’s going to start to be really sick from CLL in the next few months. You might see their platelet count is going down, or their hemoglobin is going down a lot, and so, there’s kind of a level – so, a platelet of 100 and hemoglobin of 10-11 where you think about treatment. It’s not like, “Oh, you hit this level, you need to do treatment tomorrow,” but it’s time to plan a treatment.

Also, that is the one group of CLL patients where a bone marrow biopsy is really needed to make sure that the decrease in blood counts is CLL and not something else. Most of those people feel fine, but if your platelet count is headed down, it’s probably best to start treatment before your platelet count is below 10 and you start having bleeding symptoms. So, there are some people who are recommended to take treatment for CLL because their doctor has noticed that they’re gonna be at risk for developing problems or symptoms that might make them feel much less well.

And so, you wanna start the treatment when you’re still feeling good and before you’re having a lot of bleeding and issues. However, the majority of people who don’t have symptoms don’t need treatment for it. Quite a while ago, they did randomize people with intermediate- or high-risk CLL to either chemotherapy at diagnosis or delayed until they had one of those treatment indications I’ve been talking about, and treating it with chemotherapy just because you’ve diagnosed it did not help people live longer or better. So, if people are not having symptoms and their doctor doesn’t notice a problem, there’s no reason to treat it.

Patricia:                      

We talked a little bit how diet and exercise can help with symptoms, but can they control symptoms? Tricky question.

Dr. Rogers:

I’m not sure. I think that’s really individual. The thing I get asked all the time is, “What diet do I go on to make my CLL go away, or so I never need treatment?” And, there are no evidence-based diets to make your CLL go away. The coffee enema thing doesn’t work. The no-sugar thing – I’m not sure that works.

I do tell my patients to try to eat and behave as if they’re gonna be around a long time because people with CLL usually expect to live many, many years, and heart disease is still killing people in this country, so you can’t stop managing your diabetes, you can’t start eating hamburgers when you have horrible heart disease, so I think you still have to follow a regular, healthy adult diet.

Most people feel better if they eat fruits and vegetables and try to eat a well-balanced adult diet, so I think that helps pretty much everyone, even healthy adults, but I don’t have any specific diet to control CLL symptoms, although I did have one guy that said ever since he’s been eating white toast every morning, all his symptoms are much better. So, if you find something that works for you, it doesn’t matter what it is. If it’s working out for you, you should do it.

Patricia:     

Excellent. What do you think about the future – how do you feel about the future of CLL treatment? What makes you hopeful?

Dr. Rogers:

Oh. Well, I think a couple things. One is for CLL, in many ways, the future is now, and I think it’s only going to get better from here on out.

So, a little less than a year ago, two very large clinical trials were reported that compared our best chemotherapy to oral targeted therapy with an ibrutinib-based regimen for CLL, and the oral targeted therapy was superior in terms of something we call “progression-free survival,” which is how long people were alive without their CLL coming back or causing problems.

So, oral targeted agents, which, in general, not – everyone’s an individual, so until you try a treatment, you don’t know what’s gonna happen, but in general, have fewer side effects than chemotherapy, are better at controlling CLL than chemotherapy, so that’s what I like to put in the category of “the future is now,” and I think it’s only gonna get better. So, we’re improving on our existing oral targeted agents with next-generation drugs that have slightly different side effect profiles.

We are also studying combinations of these drugs, and oral targeted agents, and monoclonal antibodies to try to make treatment shorter, to try to get remissions deeper, to really try to improve the quality of life of people taking these therapies and not just improve how long they live with CLL.

And then, for people that really have the worst of the luck with CLL that have really high-risk findings, that don’t benefit for as long as we’d like from oral targeted therapies, that their CLL comes back after a couple years on those, I think the most exciting thing is really CAR T-cell therapies and those cellular-based therapies that aren’t donor stem cell transplant because I’ve seen people who have really benefited from those who had terrible problems from their CLL before that, and I think that’s gonna improve quality of life for a very specific subset of our CLL patients.

That is still in clinical trials for CLL, but has been in enough of them I can feel very confident that we have an idea about what the side effects are and how well it works. So, that’s really exciting. Can I add just one more thing about this before I…?

Patricia:

Absolutely.

Dr. Rogers:

So, I saw a consult recently for a person that was recommended to start treatment for CLL. His questions for me were, “Should I start treatment now, and what treatment should I take?” This person had never had a treatment before. So, I agreed with his oncologist, who said that he should start treatment now, and his oncologist had talked about several options, but I think with some of the changes in what we’re recommending for CLL, his oncologist had also wanted him to come see me to get a recommendation too, so it was like, “Oh, that’s great. Why don’t you go see Dr. Rogers at Ohio State and see what you should do?”

And so, one of the things he had discussed with the two oncologists in his office closer to his home were, “Oh, we have these – we have ibrutinib, it’s a really outstanding oral targeted agent, but you’ve gotta take it for a really long time, so why don’t you just take chemotherapy, because I think something better will come along?”

And, I was like, “This something better. Literally, this was demonstrated to be better than the chemotherapy. Something better did come along, and it’s this.” So, ibrutinib is better than chemotherapy. I think the idea of “Why don’t we do a less effective treatment because something better might come along?” is not true anymore. We have something better. And, he actually decided to enroll in a randomized phase 3 trial that’s gonna set the new standard of care in CLL, so he was very excited to get treatment as part of a research study. I think he decided that was actually really important to him, and he really liked what the study was.

But, it was just – it was kind of like, “Maybe something better will come along.” I’m like, “Something did.” So, that’s kind of the nice position that many people with CLL are in now. There’s still a lot of work to be done in CLL, but I just get increasingly hopeful as therapies get easier to take and more effective.

Patricia:                      

Fantastic. Thanks so much, Dr. Rogers, for taking the time to join us today.

Dr. Rogers:                 

Thanks for inviting me.

Patricia:

And, thanks to all of our partners. To learn more about CLL and to access tools to help you become a proactive patient, visit www.powerfulpatients.org. That’s powerful patients – with an “s” – dot org. I’m Patricia Murphy. Thanks so much for joining us.