Tag Archive for: CLL clinical trials

What Barriers Do CLL Patients Face in Accessing Clinical Trials?

What Barriers Do CLL Patients Face in Accessing Clinical Trials? from Patient Empowerment Network on Vimeo.

When could CLL patients run into barriers to clinical trial access? CLL expert Dr. Adam Kittai explains how access can vary, explains cooperative groups, and discusses the financial benefits of some clinical trials.

Dr. Adam Kittai is a hematologist and an assistant professor at the The Ohio State University Comprehensive Cancer Center – The James. Learn more about Dr. Kittai, here.

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Transcript:

Katherine:

What do you feel are the barriers to accessing clinical trials for patients?  

Dr. Kittai:

So, unfortunately, a lot of clinical trials are at academic centers, and so there are – and the reason that is, is that the academic centers have the infrastructure to run the clinical trial. So, as we have mentioned before, there’s a lot of visits with a lot of extra science and labs that are done associated with the clinical trial. And a lot of those things and the coordination can only be done at large centers that can open clinical trials and know how to run them.  

Similar explanation could be that that safety monitoring committee that I’d mentioned before, where the academic centers have the infrastructure to ensure safety for the patients. So, access to academic centers is a limitation to enrolling in clinical trials. That being said, there are a lot of centers that are associated with an academic center and do have a lot of the clinical trials that are available at the academic center.  

And there are also cooperative groups. These cooperative groups are called Alliance and ECOG and SWOG. And these cooperative groups are national groups that are headed by multiple academic centers in partnership with pharmaceutical companies and they typically run large Phase III medical trials that help redefine standard of care. And those particular clinical trials are often available at private practices as well.  

Katherine:

Oh, that’s great. So, patients don’t necessarily have to think about traveling to a large educational institution then to become part of the clinical trial?  

Dr. Kittai:

Not always. Not always. Typically for the Phase I, the answer is yes. But for Phase III trials, usually there’s a lot of access available for Phase III trials.  

Katherine:

What would you say to patients who may be hesitant about participating in a trial?  

Dr. Kittai:

I would say that it’s important to at least ask about what’s available. And knowing what’s available and the risks and benefits of going on a clinical trial is how you should make the determination if you should go on a clinical trial.  

Remember what I said earlier that the clinical trial is really meant to help improve safety or efficacy. So, we don’t open clinical trials that we are not hoping to improve one of those two things. And so, that is something that we should be able to put in words to you when inquiring about the clinical trial. What is the goal of this trial, and why do you think it’s going to improve safety or efficacy? And the physician who’s talking the trial with you about it should be able to answer those questions for you. So, if you have some hesitance about going in clinical trials, I would say gather your information first before making a final decision.  

Katherine:

Some patients worry about the financial aspect or impact of a clinical trial. Aren’t trials expensive?  

Dr. Kittai:

So, actually, most clinical trials are less expensive than enrolling a standard of care. So, this is actually a benefit of going on a clinical trial. Often times, the drugs in the clinical trial are a cover. So, that’s something to ask too. And so, if somebody’s having trouble getting access to novel therapy that is looking good in a specific cancer, a clinical trial is actually a way to get access to that drug without paying for it.  

Also, all clinical trials when they’re being developed are looked at by the finance committees of the hospital or wherever it’s being developed. All standard of care options are billed through the patient insurance, but all the extra stuff is usually covered by the pharmaceutical company that’s enrolling those patients onto the trial. Or I should say the supporting the clinical trial.

How Can CLL Patients Find Clinical Trials?

How Can CLL Patients Find Clinical Trials? from Patient Empowerment Network on Vimeo.

Finding a CLL clinical trial can feel overwhelming for some patients, so where can they start? CLL expert Dr. Adam Kittai shares advice, credible resources, and provides key questions to ask about trial participation.

Dr. Adam Kittai is a hematologist and an assistant professor at the The Ohio State University Comprehensive Cancer Center – The James. Learn more about Dr. Kittai, here.

See More from CLL Clinical Trials 201

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How Can Clinical Trials Be Accessed?

 
Are Clinical Trials a Logistical Nightmare?

A CLL Expert Addresses Common Clinical Trial Misconceptions

Transcript:

Katherine:

Now that we know what trials are and how they work, how can people find out what trials are available to them? 

Dr. Kittai:

Yeah. So, I’ll come back to this, but once again, talk to your physician. They’ll know what clinical trials are available at whatever site you are seeing them in. If there’s a local academic sector, the academic sector typically has clinical trials available there as well. So, it’s always good to get a second opinion in that regard.  

But one of the open access places that you can find all clinical trials is clinicaltrials.gov. This has all active running clinical trials listed out and anyone can access it. There are other societies out there that often post about clinical trials. So, there’s the CLL Society. It’s a website that you can check out that has a lot of information on there about active clinical trials in CLL. There’s also The Leukemia & Lymphoma Society, the Lymphoma Research Foundation, they all have websites available that have a lot of clinical trials listed and how to access them.  

Katherine:

Are there key questions that you think patients should ask their health care team about participating in a trial?  

Dr. Kittai:

Yeah, for sure. I think one of the key questions to ask is, is the control arm appropriate. So, what do I mean by that? Sometimes people who design a clinical trial will design a trial where the control arm is an easy control arm to beat, meaning that it’s a treatment that we wouldn’t necessarily put you on as standard of care.  

And so, I think this is a real question and an honest question that you should ask your physician prior to enrolling on a trial is, is the control arm something you would give me as standard of care. And if the answer is no, you should really consider not going on that trial or talking about why you would want to go on that trial if the control arm is not something they would put you put you on as standard of care.  

Katherine:

Right. 

Dr. Kittai:

That’s, I think, a key question to ask. And again, asking what phase it is and understanding where we are in the development.  

Are CLL Clinical Trials Safe?

Are CLL Clinical Trials Safe? from Patient Empowerment Network on Vimeo.

What should CLL patients know about clinical trial safety? CLL expert Dr. Adam Kittai explains concerns that patients should discuss with their doctor, the level of research before Phase I studies, and drug safety monitoring.

Dr. Adam Kittai is a hematologist and an assistant professor at the The Ohio State University Comprehensive Cancer Center – The James. Learn more about Dr. Kittai, here.

See More from CLL Clinical Trials 201

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Transcript:

Katherine:

Patients often have questions about safety. What are the risks of clinical trial participation?  

Dr. Kittai:

Yeah, so before anybody enrolls onto a clinical trial, you should sit with your doctor to talk about the pros and cons of entering this clinical trial. One of the things that they will talk to you about is what the expected safety of this drug is. So, you might ask yourself, well, if it’s a phase one study, first in human study, how do they know what toxicity to expect? 

Katherine:

Right. 

Dr. Kittai:

The answer is that there’s a lot of pre-human studies that occur, both in mice and monkeys and other animals, and researchers often have a good idea of what to expect in human. But there is a lot of unknowns in a phase one clinical trial. And after discussing with your doctor the pros and cons of going on a clinical trial and what side effect profile to expect from whatever drug or combination that you are about to be using, usually you go through a consent.  

Usually, you’ll get a packet, it’s about 10 to 20 pages long, written in a way that patients can understand. And it’ll have a list of toxicities that are associated with the research that is occurring. In terms of knowing what adverse events might happen, the consent is key, because it’ll have those all listed out.  

And also having the conversation with your physician about either what they’ve experienced giving this clinical trial, or what is to be expected after this drug had been introduced pre-humans.  

Katherine:

Mm-hmm. Are there protocols in place to protect patients? 

Dr. Kittai:

Yes. So, remember how we talked about in the phase one trials, we dose escalate the drug until we’ve reached some toxicity limit? There are specifically rules written out in a protocol that the doctor must follow that ensures safety for the patients that enroll in clinical trials. And that dose escalation part where we reach a toxic limit is a key part of those phase one trials that is spelled out before you even enroll.  

Usually, there’s also something called a Data Safety Monitoring Committee, as well as other committees that are looking at patients as they are receiving these drugs and move forward on clinical trials to make sure that the investigators are following the protocol as printed. That if anything happens, they document why it happened and fix the problem before it becomes another problem for a patient. So, there are very specific safety rules and a lot of redundancy to protect our patients, because the number one priority is to protect the patient. 

Katherine:

Yeah. I think you’ve already answered this, Dr. Kittai, but how do you know the medicine is safe before a human trial even begins? 

Dr. Kittai:

The answer is you don’t. There is some risk. As I said, they do test it in animals before they give the drug to humans, and they usually start at the lowest dose possible. But there are certain circumstances where there are surprising side effects that are not expected. And so, when you’re entering a first in human, Phase I trial, that is a specific risk that you do need discussed with your physician about before you enroll. 

Katherine:

Can a patient change their mind once they’ve enrolled in a clinical trial? 

Dr. Kittai:

Always. Always.  

Katherine:

Okay. 

Dr. Kittai:

They can come off the clinical trial at any point if they choose to. 

What Are the Types of CLL Clinical Trials?

What Are the Types of CLL Clinical Trials? from Patient Empowerment Network on Vimeo.

There is not just one type of clinical trial. Expert Dr. Adam Kittai explains the types and how the trials are conducted, including randomized and double-blind studies.

Dr. Adam Kittai is a hematologist and an assistant professor at the The Ohio State University Comprehensive Cancer Center – The James. Learn more about Dr. Kittai, here.

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CLL Clinical Trials: What Are the Phases?

 
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Transcript:

Katherine:

Okay. You mentioned randomized clinical trials. There are a couple of other clinical trials as well. Would you define them and tell us how they’re different from one another?  

Dr. Kittai:

Yeah. So, a randomized trial is when you enroll onto a study, and you get randomly assigned to either the experimental arm or the control arm. The experimental arm is that new drug that we talked about. And the control arm is usually the standard of care. So, that’s a randomized study. 

And randomized studies are usually Phase III trials, but they can be phase two in some scenarios as well. You have – usually that’s paired with a randomized control study. So, a control study is just there’s a control arm, that’s what that means. But those usually go hand in hand. Those are usually together.  

And then another trial is the double-blind clinical trial. So, a double-blind clinical trial means that once you’re randomized to either the experimental or the control, neither you nor the physician know what drug you’re taking. And that usually is not used in CLL trials. Usually, we know what drug the patient is assigned to. And the reason why that is, is because oftentimes we’re looking out for specific adverse events or toxicities of the drugs we’re implementing at Phase III.  

And then, also, if you’re getting a triplet versus a doublet, meaning three drugs versus two drugs, it’s very hard to blind somebody to know which drug they’re on because obviously you’re getting three drugs versus two drugs. Or if an infusion is involved in one arm but not in the other arm, you obviously know that you’re getting an infusion versus an oral drug. 

Katherine:

Ah, okay. Are there common clinical trial terms that you think patients should know about? 

Dr. Kittai:

I think we covered most of them. So, knowing that phase one is typically the first in the sequence of events that I would ask your physician if this was a first in human study, right, because that comes with some special considerations knowing that you are the first human to receive a new drug is very important. Versus a phase three study where, you know, you know this drug has already gone through phase one and two in development, meaning it’s been given to a lot of patients, and they’re just looking to see if it’s better than standard of care. So, I think knowing those general concepts about what’s the difference between a phase one and a Phase III study, it’s very different. I think it’s important to keep those in mind when talking about clinical trials and discussing with your doctor.  

CLL Clinical Trials: What Are the Phases?

CLL Clinical Trials: What Are the Phases? from Patient Empowerment Network on Vimeo.

CLL clinical trials have different phases, but what happens in each phase? CLL expert Dr. Adam Kittai explains the goal of each phase in relation to research and patient care.

Dr. Adam Kittai is a hematologist and an assistant professor at the The Ohio State University Comprehensive Cancer Center – The James. Learn more about Dr. Kittai, here.

See More from CLL Clinical Trials 201

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What Is a Clinical Trial and What Are the Phases? 

Why Should CLL Patients Consider Participating in a Clinical Trial?

A CLL Expert Addresses Common Clinical Trial Misconceptions

Transcript:

Katherine:

Let’s talk a bit about how trials work, starting with the phases. What happens at each phase?  

Dr. Kittai:

There are actually four phases of clinical trials, although three phases are typically what’s talked about. So, Phase I is when we are first introducing the new medication, the combination, or the old medication in a new scenario for the first time in a human being.  

Phase one encompasses a lot of different things. It could be a first in-human phase one, where we’re giving the drug for the first time in a human being. It could be, as I said, the combination of drugs being used for the first time in a human being. Or it could be that we have this drug that works for this other cancer and we’re trying it out on this new cancer. So, we might have experience with this drug in another scenario, but not in the scenario we’re trying to do.  

And the primary purpose of the phase one clinical trial is to see if it’s safe. So, that’s the primary purpose of a phase one clinical trial – see if this new medication, this old medication in this new scenario, or this new combination is safe to use going forward.  

Katherine:

Right. 

Dr. Kittai:

We are able to see if it works to a small degree in the phase one trial, but typically these trials are very small with somewhere between 10 to 50 patients. And so, it’s hard to know how well this works by looking at such a small amount of patients.  

Once the Phase I trial goes forward, we usually go onto Phase II. So, one of the other points about Phase I is to determine the correct dose. Usually in phase ones, we increase the dose of the drug slowly until it meets some sort of toxicity cut-off for our patients. So, once that dose is discovered, then we move onto Phase II, and Phase II is usually a small study, usually about 50-100 patients where we’re looking at preliminary efficacy, to see if this drug, this new combination, or the drug in a new scenario, is actually working.   

And so, Phase II will tell us we think it’s working and if it looks good in phase two, it gets moved onto Phase III. Phase III is the final part of the drug development, where if it passes Phase III, it usually gets approved by the Federal Drug Administration. And Phase III is usually a randomized trial where you’re giving the new drug, the combo, or the old drug in a new situation, and you’re comparing it to whatever’s used as standard of care in that particular scenario.  

Katherine:

Right. 

Dr. Kittai:

And that’s usually a randomized study where patients are either getting the new thing or the old thing. And then, we’re determining which one works better. Lastly is Phase IV, and this is post marketing. So, after a drug gets approved, the drug company and the FDA requires just a wide scope of just data that’s collected to see how well the drug is working and if it’s safe once it’s brought out to the wider community.  

A CLL Expert Addresses Common Clinical Trial Misconceptions

A CLL Expert Addresses Common Clinical Trial Misconceptions from Patient Empowerment Network on Vimeo.

CLL patients and care partners often have misconceptions about clinical trials. CLL expert Dr. Adam Kittai addresses common patient questions and concerns about trials.

Dr. Adam Kittai is a hematologist and an assistant professor at the The Ohio State University Comprehensive Cancer Center – The James. Learn more about Dr. Kittai, here.

See More from CLL Clinical Trials 201

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How Can Clinical Trials Be Accessed?

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Are Clinical Trials Safe?

Transcript:

Katherine:

Right. So, I’d like to walk through a few common questions that patients have about clinical trials. And here’s a concern we received from a patient prior to the webinar. “I’m nervous that I will receive a placebo if I join a clinical trial.” So, first of all, would you define a placebo? 

Dr. Kittai:

Sure. A placebo is usually a sugar pill or something that has no effect. That’s what a placebo is.  

Katherine:

And is it true then, would a patient possibly get a placebo in a CLL clinical trial? 

Dr. Kittai:

Not typically. So, in terms of clinical trials for CLL, we have a lot of treatments that are effective and safe in CLL. And so, we don’t typically design trials where you’re not getting some kind of active therapy. It would be extremely rare, and I don’t know of any trials currently that involve patients getting a placebo for CLL. Because it wouldn’t be ethical for us to enroll a patient on a trial where they would get a placebo instead of active therapy. 

Katherine:

Here’s another question from an audience member, and I think this is probably a common concern for patients. “Is a clinical trial only something I should consider if there are no other options?” 

Dr. Kittai:

So, in my opinion, you should always consider a clinical trial, even if there are other options. And it’s because of those two reasons that I mentioned earlier. Number one, it benefits the CLL community as a whole to participate in the trial so that way doctors and researchers can collect data to improve outcomes for patients with CLL. And also, even though our drugs currently work really well, we don’t know how well they’ll last for, right? So, they still don’t know for certain how long our current drugs are going to work for in the future.  

And we’re always trying to do better. We’re always trying to create some sort of treatment, some sort of treatment paradigm that might be safer, as well as work better, and either of those goals is approvable. All of our drugs come with toxicity, right? And even though they’re really safe and they work really well, we’re hoping to develop something that is even safer and works even better.  

Katherine:

Yeah. It sounds, then, like trials can be considered throughout a patient’s life with CLL. What concerns do you hear from your patients?  

Dr. Kittai:

Yeah, so I think the primary concern I hear about a trial and the difference between going on a trial and standard of care, is that typically for a trial, it does require a little bit more from the patient. Meaning that there’s usually more visits – whether it is to monitor the effect of the new medication or new medication combination on the patient, whether or not it’s affecting their laboratory values or how they’re feeling.  

Or there might be parts of the trial that require invasive procedures. So, for instance, many trials will require bone marrow biopsies where a standard of care won’t. And the reason why the collection of those bone marrow biopsies is important for the trial is to better get an idea of how the treatment is working on a patient’s body.  

So, I think those are the two primary concerns I hear from the patient. Number one, it typically is a bigger time commitment with more visits to the doctor because we have to closely monitor the patients while they’re on trial. And number two is sometimes the trial involves procedures that otherwise wouldn’t be indicated for standard of care.  

Why Should CLL Patients Consider Participating in a Clinical Trial?

Why Should CLL Patients Consider Participating in a Clinical Trial? from Patient Empowerment Network on Vimeo.

What is a CLL clinical trial, and why should patients consider participation? CLL expert Dr. Adam Kittai explains the purpose of clinical trials and how patients can benefit. 

Dr. Adam Kittai is a hematologist and an assistant professor at the The Ohio State University Comprehensive Cancer Center – The James. Learn more about Dr. Kittai, here.

See More from CLL Clinical Trials 201

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How Can Clinical Trials Be Accessed?

CLL Clinical Trials: What Are the Phases?

A CLL Expert Addresses Common Clinical Trial Misconceptions

Transcript:

Katherine:

So, a key part in moving forward with CLL research is clinical trials, right? So, for people who may not know the term, what is a clinical trial? 

Dr. Kittai:

Yeah. So, a clinical trial is an experiment where patients are enrolled to receive a treatment that is either new or new in a new setting – so, an old treatment in a new setting – and we’re looking to see whether or not the treatment leads to improved outcomes for our patients.  

Katherine:

Why would a CLL patient consider participating in a trial? What’s the benefit for them? 

Dr. Kittai:

Yeah, great question again. The benefit of a clinical trial is two-fold. One is that by participating in a clinical trial, we are collecting data to determine what’s best for patients moving forward. So, in a way, by participating in a trial, you’re contributing to the benefit of CLL patients in the future to help us determine what’s best for everybody moving forward. That’s one reason to go on a clinical trial. Another reason to go onto clinical trials is that it allows for access to therapies that may not be available otherwise, which may work better than what we already have and may be safer.  

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Chronic Lymphocytic Leukemia: Adrian’s Clinical Trial Profile 

Chronic Lymphocytic Leukemia: Adrian’s Clinical Trial Profile from Patient Empowerment Network on Vimeo

Chronic lymphocytic leukemia (CLL) patient Adrian’s diagnosis came as a shock when he’d been feeling healthy. Watch as he shares about his unique patient journey – as a former physician and past experience supporting clinical trials –  about the value clinical trials can provide in making treatment decisions and access to treatments for improved patient outcomes. 

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Deirdre’s Clinical Trial Profile


Transcript:

Adrian: 

Hi, I’m Adrian., I’m 50 years old. And in 2017, When I was 46, I was diagnosed with chronic lymphocytic leukemia (CLL). It happened as a bit of a shock to me, actually. I’ve been quite healthy quite well earlier that week, I’d gone walking in the mountains in Switzerland, but I collapsed one day on the way home from work, and was diagnosed with pneumonia. And during that illness, they realized that my immune system wasn’t working too well, and then my lymphocyte count was high, and I was diagnosed with CLL. I was put on watch and wait, which for some people can last a decade or more, but for me, it only lasted 15 months. 

As a doctor, I obviously know a fair bit about the clinical research, and so I did a bit of research on my own. It was going to be difficult for me to get one of the selective treatments outside of a trial. So I wasn’t really sure what to do, and I became quite pressured and quite stressed about how to make this decision, and it might sound odd, but it felt like a bit of a relief almost to allow a computer to make the choice for me. Obviously, it’s a bit weird getting to the point where you realize, actually, a doctor doesn’t know what’s best for you, you don’t know what’s best for you, and your research doesn’t give you a clear answer, but to me that’s the ideal time for a trial because then you don’t know if you know what’s best for you, then you probably ought to go down that road, but if you’re uncertain and you think, well, any of these three treatments that were on offer to me through the trial would be good, they all work, they went to slightly different side effect profiles, and it was hard to know which would work best for me as an individual.  

So, I quite like the idea that in a way, as an individual, one of these treatments would be better for me, and it might not be the same one that would be better for another patient, and so even with the data, we wouldn’t know for sure which of the best treatment was for me. Well, at least this way, it’s a computer making the decision randomly for me, so I’ve got an equal chance of getting whatever is the right treatment for me. But the other major thing, of course, to me was the idea or giving something back, and I guess this is where my professional background did make the difference, because I’d spent more than a decade working in clinical research myself and encouraging other doctors and helping other doctors who are running these trials and helping to supervise them, helping to run the trials and design the trials, and so I figured that as I obviously benefited in the community, benefited from so many other people who had gone before and put themselves forward for these trials, so there was a altruistic part of me that wanted to give back.  

None of these drugs would be available to us now if other people hadn’t taken the risks, if you like, and taken on board these clinical treatments and sometimes actually by taking on a treatment a bit earlier than you might otherwise have been able to get it. You might actually gain a benefit, and I’ve certainly got friends who took treatments that are now considered old school, but when they took them, say 20 years ago, they were very much new school, and if they have to take and then they would probably have died.  

The treatment itself worked really well, and I was actually randomized to the old-fashioned treatment. It’s well known what the side effects are and what you’re dealing with. I did get quite unwell at the beginning and I probably would have that happened no matter what treatment I had. You kind of get used to being in the hospital, and they know what to do, and they know how to look after you. And so at the end of the treatment cycle, I got to the point where my cancer was completely in remission, to the point that they weren’t able to detect any cells using the tests that they have. And the doctors told me that there’s almost certainly some cancer cells left there, and it will at some point come back in my case, although sometimes, even with these blood counts, they can get rid of it all together.  

So I’m left with that uncertainty of knowing when is it going to come back? But for me personally, I’m also been left with quite a bit of damage to the immune system, so I do deal with infections. I do try and make the best of how I am today. I have some limitations, I’m not able to work. I’m stronger than I was at my weakest point, and I know for a lot of people, they get a lot better than I have many people bounced straight back and are able to work, or even able to work all the way through treatment. I’m very glad I had the trial though, I feel like my information may help to help people decide which treatments to use in the future, and I’d definitely go for another trial if I was offered it again.  

I know we don’t like to have unnecessary tests, but it just means that you feel like you’ve been looked after well and assessed well, and they should explain to you in great detail what the options are, and I think it’s very important if you’re considering a trial to think very carefully about the options that are being given to you. It’s really important to make sure you understand what all the options are that you are being offered and then you’re happy to take any of them, and you understand the benefits and risks of each of them, and why it is that your doctor feels that these treatments are suitable for you, if there’s one treatment that you feel very strongly about that you really want to have or that you think is definitely best for you, you’re probably better off trying to get that treatment outside of the trial, because it takes a certain mindset to be willing to allow a computer to decide for you, and sometimes you not to even know what treatment you’re on. 

I knew what treatment I was on, sometimes you won’t know, and some people find it quite difficult to deal with and so if I was you, I’d leave it to the people who feel more comfortable, but the only way you’ll know really is by looking into it. And so, I think going for that screening appointment, understanding, having all your questions answered, making sure you know what’s involved and whether there are going to be any additional visits, whether that’s going to be a problem for you. And what that all looks like so that you know what you’re getting yourself into because you might have to come to more visits and spend longer at the hospital and such like, but at the same time as a reward involved because you feel like you’re being well looked after and you’ve usually got a phone number of a nurse or research or that you can ring any time with any of your questions, and so that’s a definite bonus.  

So, for me, a clinical trial is an opportunity for you as an individual to get a treatment that may well not be available to you outside of the trial, and so that can be a benefit to you and also gives you the opportunity to have extra care potentially. But also, it’s an opportunity for us to give back, and I think for society as a whole, it’s really important that patients are willing to volunteer so that we can get new medicines. Because without clinical trials we’ll never get new medicines we’ll just be stuck with the old ones, and when you look at blood cancer as a whole, it wasn’t that many years ago where there really weren’t very many treatments at all, where you know it was chemotherapy or nothing, and thanks to the sacrifices of many patients who’ve gone before, we’ve now got a wealth of treatment and more coming down all the time, and therefore an improved quality of life hopefully, but certainly also an improved quantity of life. So yes, trials can actually save lives down the way down the line, even if it’s not right, and they can certainly save later lives, and sometimes they might give you a treatment that would work for you that wouldn’t be available for you otherwise. 

Chronic Lymphocytic Leukemia: Deirdre’s Clinical Trial Profile 

Chronic Lymphocytic Leukemia: Deirdre’s Clinical Trial Profile from Patient Empowerment Network on Vimeo.

Chronic lymphocytic leukemia (CLL) patient Deirdre experienced a different diagnosis and treatment path as a female CLL patient diagnosed at age 35. Watch as she shares about her patient journey, the value of clinical trials, her advice to other patients, and things she wishes she had approached differently in her CLL care. 

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Transcript:

Deirdre:

My name is DeirdreI was diagnosed with chronic lymphocytic leukemia (CLL) at the age of 35 in 2018, and I’ve been on the medical trial in UK for the past, coming up to two-and-a-half years. I apparently had CLL for quite a number of years before I was diagnosed. It came up in through different ways, through being fatigued even after having lots of sleep, I’d feel very tired.  I used to feel quite unfit. I’d get different injuries. A few of them I had to get looked at through X-rays and nothing was found, and I’d sometimes while doing arm exercises my arms felt kind of hollow and lots of different bruises which came up very easily and took ages to heal. Lots of different colds, infections and blues, which would take a lot longer than a normal person, and I just generally was feeling quite run down for a really long time. CLL wasn’t even something I’d even heard of before I was diagnosed.  

Someone my age, a female, under the age of 40 was incredibly rare to have CLL. And it wasn’t until I actually had kind of a random blood that it was brought up that I had quite a high lymphocyte count. There was no real, real concern just that you should get this checked out, so it was a few months until I could see a consultant. And he said, for my age “It’s probably nothing because you’re under 40.” I had at the back of my head, my lymph node was quite enlarged, which I had actually mentioned before to my GP. I hadn’t felt very well at the time, so he just said, “Oh, it’s probably just your lymphocytes are up, and lymph nodes are nothing to be concerned about.” But, my consultant, she said, “this is a bit concerning, and you could have CLL.” And then I started with researching CLL, and I realized that all of the bullet points online were things that I’d been going through around my mid-20s to my mid-30s, so I’d had these kind of vague symptoms that all started making sense. So, when I was actually diagnosed, my oncologist, he was kind of relieved really. And I said,” Don’t worry. I know I’ve got CLL, and that’s what it was.”  

So, I was diagnosed with CLL, and my oncologist said that I had accelerated CLL, which meant that I actually had to forego watch and wait. My CLL had gotten to a point where I couldn’t do that. I had to start treatment ASAP. So, I had to have a few different tests, different scans, so I could start treatment. My particular biomarkers, I was researching myself, looking at different treatments that I felt would be best for me, and I came across the FLAIR trial. I was speaking to my oncologist about how could I possibly take part in the FLAIR trial in the UK and he said have to have quite a few different tests just to see if I was a suitable candidate. I was found to be a suitable candidate for the FLAIR trial, and I was slightly hesitant, because I read that I would have to have more observation.  

I actually quite liked having my CLL looked at more, so I was quite positive about starting the trial and so I got into the FLAIR trial. I was fortunate enough to be randomized into trying the two drugs that I particularly wanted that I thought would be best for me. So far, I’ve been very, very fortunate. One thing that I’ve learned through having CLL is that everyone’s CLL is slightly different. So with my particular biomarkers, I felt that the drugs that I was randomized on would be working for me, it depends on your situation, which drug would be best for you. I was very fortunate that I got on the trial, and I’m very, very happy that I’m on the trial.  

I would say to people who are considering starting a trial to really speak to your oncologists, speak to your doctors. 

If you can go online, there are particular CLL forums online, you can speak to quite a few other people who are on trials and ask them questions. Again, everybody’s CLL is different, so just because one drug worked for someone doesn’t necessarily mean that the drug would work in the same way for you. But, I really would recommend the trial, the care that I had from my nurses and doctors and oncologists had been amazing. I do think I’ve had such fantastic care.  I do have to have maybe a few more tests to be more scans than usual, a few more biopsies, but I would have to have some anyway, and they’re actually not that bad. I think a lot of these things, I would read about them online perhaps, and sometimes they seem worse than they actually are. You imagine, them to be worse than they really are.  I would really recommend, getting on to a medical trial if it’s available to you, and if you can get on the trial.  

If I could go back to my pre-diagnosed self, I absolutely definitely would have said, pay more attention to how you feel your body and speak to your doctor about it, but don’t just rely on one doctor. Do keep an eye on these things, which is over many years, all these small things like knots and fatigue and bruising and everything that they all seem like it’s not connected.  I wish I could go back and get checked out properly even if I maybe had to go private healthcare to get myself checked out, because deep down I knew there was something not right. And I wish I’d been a bit more confident in getting the observation that I needed to have a full blood count and have everything looked at. I wish I could go back and maybe get a second opinion. 

My medical trial in total is going to be six years, and I’m very fortunate, I started actually before COVID- 19, so all the times they had to go into hospital were beforehand. I’m still on the same drugs now and I’m doing really, really good. I think everyone needs to decide for themselves and think, you know what’s best for me is a medical trial best for me or just having normal treatment, if it’s best for them. Everybody’s CLL is different, but the medical trial has been fantastic for me, and I would really recommend it to anyone who is suitable for trial.  

Chronic Lymphocytic Leukemia: Shirley’s Clinical Trial Profile

Chronic Lymphocytic Leukemia: Shirley’s Clinical Trial Profile from Patient Empowerment Network on Vimeo

Chronic lymphocytic leukemia (CLL) patient Shirley felt she had a different experience not fitting the typical CLL patient demographic. Watch as she shares about her journey as a BIPOC patient, the value of clinical trials, and her advice to other patients for ensuring optimal outcomes.

See More from Patient-to-Patient Diverse CLL Clinical Trial Profiles

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Transcript:

Shirley:

In my late 30s, I started feeling extremely fatigued, and I went to my GYN. She ran a couple of tests, and she has sent me over to a hematologist because she just determined that it was something that she was not knowledgeable about. Then I had a physician contact me after several blood tests, and they had told me that it was a form of cancer, and it was leukemia, and it was called CLL, which is chronic lymphocytic leukemia.

When I heard the word chronic, I immediately thought, “Oh my God, this means like death instantly.” But they had told me that, “No, it was aggressive, but it’s definitely slow-moving,” and I have a great chance of fighting it. I was concerned because I did not feel like I wanted to be a lab rat, because I was told that I did not fit the demographics for having CLL. Most of the individuals were male of Caucasian descent, and they were much, much older than I was possibly in the late 60 to 70s, so I got a lot of stares and it made me feel very uncomfortable. So, I just didn’t want to feel like they were just like, “Okay, this is a different case. We can make a name for.” I wanted to make sure I was getting the best treatment.

I didn’t tell too many people in the beginning because I really didn’t know what was going on, but a lot of people was able to tell because no matter how much the time of sleep I got…I was always tired. The fatigue is just overwhelming. I decided to just remain optimistic about my future, because I know whenever you’re trying to battle any kind of ailment your attitude means a lot, you have to really put it out there into existence that you’re going to get better and you believe it, you have to really believe it in order to put that energy into finding out about the treatments and so forth. My doctors, they gave me a booklet that was maybe about it, and they said to me, “Take this home, study hematology and learn about your disease, how we’re going to be trying to treat it, and you know what you’re going to be feeling and you need to tell us everything if your nose itches, your eyes burn. We need to know everything that happens.”

And I was just not a complaining type of person, so there were plenty of times where I was experiencing like pain on my side and I was just like, “Oh, it’s probably just gas from the medication,” and then later found out that the medication they were giving me was enlarging my spleen, so it was pushing against my stomach, which was causing me an enormous amount of discomfort. So the doctors had to then give me other types of medication to help treat that issue that I was having, so it was definitely a long journey. This was an unusual diagnosis for someone of my heritage. The doctors explained to me that there was no blueprint for my treatment, this was, they were going to be trying things, they had a team of individuals, maybe it was like 10 or 15 of them, and they’re actually studying my case on this big screen in this room.

So it was constant medication, it was constant them trying, running the blood test, you were always, always getting blood tests, they were always giving you observations. Someone was always in your room, at least every two hours, checking to see what was going on. I just remember some time sitting in the hospital was just feeling very overwhelmed and definitely feeling isolated alone. I remember one time I was in so much pain, like my bones were hurting me so bad that I literally was just losing my mind in the bed. So they gave me some morphine, which I’ve never taken before in my life, and I wind up throwing up the chemo medication that they gave me. it was just so bad. So, the nurses and I were really overwhelmed at that point. I remember contacting family members and telling them, “I need to get out of here, I feel like they’re just trying whatever they want to try on me, and I don’t think it’s working. I don’t feel this is the place for me, like I need to really get out of here.”

So my doctor who was actually giving a seminar in Switzerland was just like…he was really amazing. He said to me, he said, “You are my prize patient. I am working every day really hard trying to get you back to being your 100 percent yourself,” He said, “You’re always like a light of sunshine.” The women that he worked with are always looking in the patient portal, and they’re like, “Shirley is coming in,” like, “Oh my gosh, she’s coming today.” And they’re excited because I always maintained a great attitude, and I always came in there dressed up.

So my doctor also recommended it when my treatment, a hospital stay was over for me to practice on taking out walks and exercising, yoga was very good meditation, they told me to get all these apps on my phone and therapeutic massages, those have been like a savior for me. I think having a good support system around you is extremely important, people who understand. Never be afraid to tell people what exactly you are experiencing. The mental fatigue that you go through is really unpredictable, and it’s off because that was not something that they, that no one prepared you for. So my doctor and his colleagues, they were just one of the greatest teams that I have experienced, them being very transparent about what was going on with me, even when I was at one time being very stubborn, I got so upset that I pulled the IV out of my arm and I was like, “You know what, I’m not doing this, I’m tired. I’ve got to get out of this hospital. I can’t stay here.”

I mean, people were just so sick, and this is not me. And they had to assure me, “It is you. You are sick, and you do have a blood cancer, and the sooner you come to terms with that, the more calm you’re going to be in being susceptible to accepting treatment. We’re here to help you, but we need you to tell us if something is not working, you don’t feel good on what’s going on in your body, we need to know.” The blood tests don’t lie, they tell them exactly what’s happening, the doctors know if the treatment is working, they monitor the CLL extremely closely. They were way more advanced at honing in on the type of treatment that I needed, so I was really assured that you’re in the right hands, and after when I started feeling a little bit better, then my trust totally opened up in staff, because I saw that they were excited about my treatment working. They were giving me the three combinations of chemo, and they were like, “This combination is working for you now.”

They started a new trial which was bringing in venetoclax (Venclexta) along with the rituximab (Rituxan), and that is what really started sending me on a better path, getting better. And then once I came off of the rituximab, which was an IV-infused chemo treatment, they decided to just keep me on the pill form of venetoclax, I was able to go into the office, which I was ecstatic about.

Advice I like to give to patients who are considering a clinical trial is definitely ask a lot of questions. Don’t be afraid, don’t be shy or hesitant and don’t feel like you feel like you’re ignorant. And always address it with a positive attitude. Keep in mind that they are there for your best interests and trying to get your health back to normalcy. Just know that you’re not in it alone. And always find someone that you can always have a conversation with if you don’t feel comfortable. Never be afraid to ask questions and just even if you do look different as opposed to everyone else that… and just get that everyone else that is sick. Don’t feel like you’re in it alone, regardless of how you look for what your demographic background is, just know that the team that’s there that’s in place is always fighting for you, and you can always say no or get a second opinion. That’s very important to know that you have options.

So, never feel afraid to ask about the clinical trials and do your research, it’s important. It’s inspiring to see people on the leukemia organization website that are exercising, they go for runs right after they receive treatment, that inspired me to say, I’m going to out and take the dog out for a walk or go out for a run and help myself get better,” and it works. It works, it really does.

Chronic Lymphocytic Leukemia: Fran’s Clinical Trial Profile

Chronic Lymphocytic Leukemia: Fran’s Clinical Trial Profile from Patient Empowerment Network on Vimeo.

Chronic lymphocytic leukemia (CLL) patient Fran was diagnosed over 20 years ago and has traveled long distances for care. Watch as she shares her CLL journey and the benefits that she’s experienced from seeking out CLL specialists and clinical trials.

“I just think that clinical trials play such an important role in the future…we’ve come such a distance in my 20 years that we would have never come had we not had people that came before me in clinical trials.”

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Transcript:

Fran:

Hi, my name is Fran, and I am 80 years young, just celebrated my birthday. And I have had CLL for 22 years. So, I developed CLL while I was still working as a nurse and as a diabetic specialist within a hospital setting. I was diagnosed as many are, by a simple blood test, having no symptoms. It was really done as part of my military requirement.

And I continued to work and continue my military career. I was a single parent, I am/was a single parent at that time, and I was raising three girls, so I had a busy life, and this was just a sideline as far as my health was concerned. I was in good health, but as the years went on, after two-and-a-half years, my count started to rise again, no symptoms. And the local oncologist that I was seeing decided that it was time for me to begin my first treatment, which was a very simple treatment again, as far as I was concerned, because it was an oral medication that I had no side effects whatsoever from, and it was easy to take once a day, and I did get some improvement in my blood work, of course. It did not put me in remission, but it brought down my numbers a little bit, and I was able to go sort of morally along for another two years when then it became evident again, not because of how I felt, but because of my numbers that I needed additional treatment. This treatment was a little bit more complicated because it was FCR, and that’s chemotherapy intravenous.

But I did say myself, “You need to start paying more attention to this disease,” and I went…I did go for a consultation at a university, about two hours from my home, and the physician was pretty direct with me and saying, “You need to start to pay more attention, get more information, have more testing done regarding the type of CLL you have,” at that point, it was the first time I had heard mutated, unmutated, which I know sounds probably a little crazy with my medical background. But again, I was able to put it in the rear-view mirror, the disease because I felt so well, and/or maybe it was denial.

I was able to come out of retirement and start to teach nursing part-time and work some other jobs. I got married. Life was good, I mean it was even better than good, and my pattern has been that I would get the treatment, get my CLL under control for about three to three-and-a-half years, that was about the time that I started, the numbers started to increase. And so my local oncologist here in Maryland said, “Well, we really need to be looking for something different,” and it was at that time when iguratimod (IGU) had just come out of clinical trials and been approved, so I was in this area, at least one of the first people in their practice to go on iguratimod.

Even though it’s not comfortable geographically, but to begin to look for a specialist and…so three years into iguratimod, I did that. I went to a university hospital setting, about three hours from my home and had way more thorough work-up, but more a work-up that included more tests that were able to give a clearer picture of my CLL, where it was at that point. And this group of doctors at this university setting said, Well, you were on track to maybe another year, and iguratimod to the end of the line as far as treatment for you, and you probably need to be looking at perhaps venetoclax (Venclexta) as your next option.

And I discussed actually with one of the local oncologists about going to see a specialist, and he encouraged me, he did not discourage me, he said, “We’d like to continue, we can play a role here, but we understand where you’re coming from.”

I am so glad that I made the decision, I did, because there is no doubt that this decision at the end of the iguratimod journey for me. I was going to be faced with another crossroads of where do I go from here as far as treatment, and I am quite sure had I not made the decision to go to a research university setting with a specialist that really is heavy into research.

I’m not sure that I would have…I would have ended up on a clinical trial, I’m not sure…I could have navigated all that myself, even with my medical background. Sure, enough the iguratimod did come to an end. And as I did, I was truly, really ready for venetoclax and a physician specialist, CLL specialist that had been at the university setting that I went to, as I mentioned, for my care, he had left that university and moved on a little further away from where I live, I contacted him just for an opinion, and he said, “Well, why don’t you come to see me?” I was in Florida at the time, and so I said, “Okay,” I would. And I did. And he broached the clinical trial.

The benefits definitely outweigh the risks for me. I didn’t realize that I was one of the first 10 or 12 people to take this drug, but I don’t think it would have made any difference because I knew that I had faith, first of all, in my physician and his knowledge, I had faith in the drug as they explained it to me, it was a new way of addressing mutations, and I just felt that this was a good pathway to be on, and that the risks, I felt would be handled by my physician and I would be watching for them, so…I do feel in my case, it was definitely worth the risk. I would say though, that people should really think and read and get as much information as they can about the specific trial that they’re considering, but know that there are just some questions, especially early on, that can’t be answered because they don’t know the answers.

I believe wholeheartedly in trials, and I would say that you have to deal with the, I think the emotion and the fear, the trepidation, this is something new, and try to work through that and concentrate on the positive. I just think that clinical trials play just such an important role in the future that you know of all of medicine, but particularly CLL we’ve come such a distance in my 20 years that we would have never come had we not had people that came before me, in clinical trials. On the other hand, I think you really do need to think about not only the immediacy, but the intermediate and the long range. What do I do if this happens or that happens? That I have to think of this.

This is part of my life now. This is something I have to commit to.

So it’s given me years with my family, with my girls, with my grandchildren, I’m getting to see kids off to college, into high school, Bob and I, my husband have had years that I never thought that I would have.

What Should CLL Patients Know About Clinical Trial Treatment Options?

What Should CLL Patients Know About Clinical Trial Treatment Options? from Patient Empowerment Network on Vimeo.

What do chronic lymphocytic leukemia (CLL) patients need to know about clinical trial treatment options? Dr. Matthew Davids explains how clinical trials fit into the array of CLL treatments, the benefits of speaking to a CLL specialist, and online resources for finding clinical trials.

Dr. Matthew Davids is Director of Clinical Research in the Division of Lymphoma at Dana-Farber Cancer Institute. Learn more about Dr. Davids here.

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Transcript:

Katherine:

Right. Where do clinical trials fit in with the treatment approaches?

Dr. Davids:

So, clinical trials are really how we’ve made all these advances in CLL over the last decade. It’s how we learn about new treatments. It’s how we learn about how to optimize the treatments that we have. I think sometimes patients have a misconception that clinical trials are a last resort, the idea that you’ve exhausted all the standard options and then you go to a clinical trial as your last hope. But I actually like to kind of turn that on its head and say that clinical trials are actually the first resort, the first best option for patients. Whenever patients can get access to a clinical trial at any stage of their disease, I would really encourage them to consider it.

We have quite a few clinical trials now in the frontline setting, meaning as an initial treatment for CLL, including some that are in development and will open soon. And these are the studies that are going to really help us define what the optimal regimens are. What’s the optimal sequence of these different novel agents?

And in CLL, really, we’re at a point where the research on the disease is so mature that when you’re in a clinical trial you’re either going to be on one regimen that you know you’re getting and you know it’s going to be an effective regimen, or you might be in a comparative trial where you could be randomized to one of two or three different regimens, but you know that each one of those regimens is one that we think is a great regimen. We just don’t know which one is optimal for individual patients. So, this is not a situation where there’s placebo-controlled trials where you don’t know if you’re going to get an active treatment or not. CLL is an area where we design our clinical trials so that all patients are going to be benefiting from cutting-edge approaches.

And so, not all patients have access to trials, and that’s okay. Again, we’re fortunate that we have many good options that can be given locally, but I do encourage patients even if they’re only able to travel to a CLL specialist once to have an initial consultation to think about doing that to get a CLL specialist on your team, so to speak. That way they can identify clinical trial options that may be a good fit, and even if not, they can advise on what the optimal treatment options are to receive locally with your own oncologist.

Katherine:

How do patients find out about these clinical trials?

Dr. Davids:

I do think the best way is through a CLL specialist because certainly they would have a great pulse on the trials, they have available at their own center. They should also have a sense for what trials are available maybe at other centers. Some of that can also be, there’s a great resource through The Leukemia & Lymphoma Society where they can help navigate patients toward specific trials that may be applicable to them.

There’s also a website called clinicaltrials.gov. It can be a little challenging if you’re not familiar with it to navigate the site, but it is actually pretty straightforward. You can put in the disease and look at different options for trials based on different drugs, for example. They’ll list the eligibility criteria for the trial. That’s often I find a way that patients can begin to identify whether they may be a candidate. You can’t tell from the website whether you’re definitely a candidate or not. You really need to partner with an investigator who’s on the trial to learn that, but it certainly can be a good starting point to figure out what’s out there.

Should Patients “Watch and Wait” Before Starting CLL Treatment?

Should Patients “Watch and Wait” Before Starting CLL Treatment? from Patient Empowerment Network on Vimeo.

What do chronic lymphocytic leukemia (CLL) patients need to know about watch and wait? Dr. Matthew Davids shares the meaning of watch and wait, when it’s appropriate for CLL patients, and which factors are monitored to ensure the best care.

Dr. Matthew Davids is Director of Clinical Research in the Division of Lymphoma at Dana-Farber Cancer Institute. Learn more about Dr. Davids here.

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An Overview of CLL Treatment Types

Transcript:

Katherine:

We have a question from the audience. Linda writes, “I’ve heard that CLL doesn’t need to be treated right away. Is that true?”

Dr. Davids:

That is true for the majority of CLL patients, and it’s actually a very counterintuitive thing. We’re conditioned that if you have cancer that it’s important to be proactive and get rid of it as quickly as possible, the sooner the better, and that is actually not the case in CLL. And we didn’t just take a guess that that’s the best approach. This is actually something that’s been studied in clinical trials. There were several clinical trials launched in the ‘70s and ‘80s looking at an early intervention strategy using a chemotherapy-based approach to see if treating at the time of diagnosis would be better than waiting until patients developed more significant symptoms.

And all of those studies did not show a benefit to early intervention.

Now, more recently those studies have been challenged as somewhat out of date, which is a fair criticism because they used an older chemotherapy drug. And so, there is a newer study now going on in Europe that is looking at early intervention with the drug ibrutinib, which is one of our novel agents for CLL, looking to see if early intervention with ibrutinib (Imbruvica), particularly for patients who have a higher risk form of CLL, may be beneficial.

But we have seen some data now already presented from this study that do not show any improvement in how long the patients live by treating with ibrutinib early, and we do see some of the typical side effects that we’re accustomed to seeing with ibrutinib. So, even with the newer data that we’re seeing, we still do not recommend early intervention for patients with CLL.

Katherine:

I’ve heard this term “watch and wait.” What does that mean?

Dr. Davids:

Yeah, it’s not the best term because it’s very passive. That refers to this observation strategy. I like to think of it more as “active surveillance.” It seems more proactive because you’re doing something about it.

You’re really checking the blood counts, you’re getting your physical exam, you’re checking in on symptoms, these sorts of things, and really keeping a close eye on the disease. And that’s the approach that we like to take

with our patients to really keep them engaged, making sure they’re staying up-to-date on their screenings for other cancers, making sure they’re getting vaccinations, these sorts of things are all the things we do with active surveillance.

Katherine:

How is someone monitored during this watch-and-wait period?

Dr. Davids:

It varies depending on individual patients. We’ve alluded to the fact that there’s different genetic subgroups of CLL already, so there are some patients that have higher-risk disease. The example of that usually is deletion 17p that people may have heard of on the FISH test. For those patients I usually am seeing them every three months or so, physical exam, checking on their history, checking their blood work. But there’s quite a few CLL patients who have lower-risk disease. If they have for example mutated IGHV, if they do not have the 17p for example, those patients may be able to be seen once every six months or so with a similar setup.

I don’t routinely get CAT scans on a regular basis for most patients. Most patients don’t need bone marrow biopsy tests unless they’re starting treatment. So, it’s mostly it’s exam, talking to patients, and checking the blood work.

How Could Emerging CLL Treatments Impact Your Care?

How Could Emerging CLL Treatments Impact Your Care? from Patient Empowerment Network on Vimeo.

In the changing world of chronic lymphocytic leukemia (CLL) research, how can emerging treatments impact care for patients? Dr. Jennifer Woyach shares information about targeted therapies, immunotherapy and clinical trials, and explains why she is hopeful about the future of CLL care.

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

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Transcript:

Katherine:                  

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

Dr. Woyach:               

Yeah. There are a lot of really exciting things going on in CLL right now. And CLL is a disease that has been completely transformed in the last five to 10 years and is poised to do so again. So, I mentioned these therapies that we use for frontline treatment, and there are clinical trials now combining them together. So, these agents work so well on their own. Are they going to be even better if we add them together?

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

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

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

Katherine:                  

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

Dr. Woyach:               

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

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