Tag Archive for: CLL expert

A CLL Expert Addresses Common Clinical Trial Misconceptions

/in , , , , , , , /by

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

Related Resources:

How Can Clinical Trials Be Accessed?

 Why Should CLL Patients Consider Participating in a Clinical Trial?

 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?

/in , , , , , , , /by

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

Related Resources:

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.  

CLL Research Highlights: What Should Patients Know About?

/in , , , , , , , /by

CLL Research Highlights: What Should Patients Know About? from Patient Empowerment Network on Vimeo.

What should CLL patients know about recent research updates? CLL expert Dr. Adam Kittai shares recent research highlights, including updates on BTK inhibitors, BCL-2 inhibitors, and monoclonal antibodies.

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

Related Resources:

How Can Clinical Trials Be Accessed?

 Why Should CLL Patients Consider Participating in a Clinical Trial?

 Clinical Trials As a CLL Treatment Option: What You Should Know

Transcript:

Katherine:

I understand that CLL researchers met recently at the annual American Society of Clinical Oncology meeting, also known as ASCO, to share their research. Are there highlights from the meeting that patients should know about?  

Dr. Kittai:

Yeah, so this time of year, there are two main conferences actually that are very important to the CLL groups at large, as well as the oncology community. So, there’s ASCO and then there’s EHA, the European Hematology Association. And in general, there was a lot of exciting things at both of these conferences. 

In CLL, we have two main treatments that we’re really focused on. One is called the BTK inhibitors, which is ibrutinib, acalabrutinib, and zanubrutinib that you may have heard about. And the other treatment regimen is called venetoclax, and that’s usually paired with something called obinutuzumab. So, right now we’re either using the BTK inhibitors or the venetoclax as our frontline therapies. And typically, when patients progress on either one of those treatments – their disease gets worse – we switch to the other one. 

And so, what I’m getting to be that right now, that paradigm of starting with one therapy – the BTK inhibitors or the venetoclax – and then switching to the other, or vice versa, is being challenged. How that’s being challenged is combining the two medications together to see if combining them together is better than giving them sequentially. So, I think this is the primary research that’s being looked at in the world of CLL and we got some updates to show that the combination of the BTK inhibitors, plus the venetoclax, is looking quite good. It’s looking like it’s inducing deep remissions in some of our patients.  

Some of the challenges here though that we still need to figure out is that a lot of these combinations are leading to more toxicity. So, ultimately, I think we’re going to have a discussion about who is the appropriate patient for the combination, as opposed to giving it sequentially. 

There’s also a lot more research going on, looking at what we call randomized trials, which we’ll get to in a second, to determine if the combination is better than giving it sequentially. Right now, we just have what we call single-arm studies that kind of show safety and how well the trial works. But really, the definitive clinical trials – and once again, we’ll get to this a little bit later – are going to be randomized study where we randomize patients to the combination versus the sequential therapy to determine if doing it together is better than doing it sequentially.  

So, I would say that this new treatment paradigm of combining our two main treatments up front is looking quite good. We’re worried about some of the toxicities when we combine these medications, and we’re still not quite sure if combining them is the right approach, if it actually is superior to giving them sequentially. So, I think that’s the name in research right now for CLL, whether or not combination therapy is better than sequential therapy. The jury is still out, but some of the new data we saw was exciting. 

Katherine:

So, how can patients stay up to date on research like this as it develops? 

Dr. Kittai:

Yeah, great question. So, for one, you can talk to your physician. A lot of the physicians will go to either ASCO or the European Hematology Association and be able to come back with some of this data to share with their patients. And then also, there’s a lot of smaller conferences that local oncologists will go to get highlights from these particular conferences, where they also will come back to the patient to let them know some of this highlighted research. I think that’s probably the easiest way for patients to get access to this research. And Google’s our friend, right? And so, a lot of things are available on Google if you know where to look for them. 

How Can CLL Patients Mitigate Distance and Technology Barriers to Care?

/in , , , , , , , /by

How Can CLL Patients Mitigate Distance and Technology Barriers to Care? from Patient Empowerment Network on Vimeo.

How can chronic lymphocytic leukemia (CLL) patients overcome barriers to their CLL care like distance, technology, and other challenges? Dr. Kathy Kim from UC Davis School of Medicine details the challenges she’s witnessed for patients and some ways that both patients and providers can help bridge the gaps to optimal patient care.

See More from Best CLL Care No Matter Where You Live

Related Resources:

 

What Multi-Language Technology Innovations Are Available for Cancer Patients and Families?

What Key Questions Should CLL Patients Ask About Digital Tools Born Out of COVID?

How Can CLL Patients Avoid Pandemic Challenges Without Compromising Quality of Care?

Transcript:

Dr. Awan:

So is it going to be financially difficult to let’s say, get an app or download an app, which might have a subscription service, attached to it, so that’s the first question that I might have. And the second question is then, this is something that I run into every day. A lot of my patients are older. Some of my patients live on farms, a couple of hours, three, four hours away from Dallas in a relatively rural area, east or west of us in north Texas, and you know those people may not necessarily have access to broadband, they may not have access to high-speed internet. So, they may not be able to get online, or if they do get online, the connections are not the most perfect, so it’s always, the video is not pretty good, or they frankly, may not know how to operate, they don’t just don’t feel comfortable operating these devices or the tablets or phones, even though they might use them for making calls and texting, but they may not necessarily be very conversing with them or very at ease with them, so are those options really difficult for our patients to use?

Dr. Kim:

Yeah, so you’ve mentioned three really key areas, cost, connectivity, and what I will call digital literacy or digital familiarity, those are really three key areas that we need to address for anyone who wants to use these tools to be able to use them. So, cost is the first thing, most mobile apps are fairly inexpensive, and if you’ve downloaded anything from the Apple Store or the Google Play store, almost everything is free, or a few things might have you know $2.99, $8.99. Some of them do have subscription fees. So, the app itself is probably the least expensive part of it. The more expensive part is, do you have a modern smartphone that can actually, where you can download that up or do you have a modern tablet or a newer laptop that can actually use apps, right? Not just software, but apps, those devices is where the cost really comes in, and you know if you’ve got any kind of device, it’s every couple of years, you have to replace it or upgrade it to kind of keep it up-to-date. So that is definitely a barrier of the cost of the computing device or remote patient monitoring device, and that is where we really need to collaborate in the industry with our hospital systems and our provider systems, with our legislative representatives, with our insurance companies, to provide low-cost access to the devices.

The third thing is connectivity, which is both cost, and it is a cost as well as an accessibility issue, and for most of the uses in healthcare, as you’ve mentioned, we need to be able to do video, we need to be able to connect to the devices for data, and that means we either have to have a cell phone data , a mobile data plan that can run data on your phone or your tablet, or you need a broadband connection in your home, an actual Wi-Fi plan that comes installed. You need one or the other. And again, either of those options are quite expensive, if you do video visits, it can really eat up your bandwidth if you’re on a low band, low bandwidth plan or you’re paying for the minute or by the bit. It can become very expensive, so we have to have a cost-effective plan available to people, and again, there’s lots of policies or proposals, to be submitted both at the state level, and there are federal programs that are actually now subsidizing. So specifically, under COVID, provider organizations can apply to the federal government for special funds to offer telehealth help to patients, so many providers have bought tablets or other remote patient monitoring devices or things like that, that they can give out to patients.

Which brings us to the third thing that you mentioned, which is digital familiarity or digital literacy. We have to help people learn how to use these. So even if you use a cell phone, it’s different using a smartphone, right? The apps are different, the navigation is different, how you touch your screen is different, how these applications actually work, and how to get the data from your own device to a provider, to your doctor is a whole another set of skills, right? Do you have to pair these devices, do you have to register an account and have a password? Do you have to approve your doctor to get access, there’s all these questions about how you would actually do all this and this is where organizations like Patient Empowerment Network, that I know does a lot of effort to help patients more how to use technology, as well as the research that we have been doing at UC Davis in the community about how to support patients overcome all these barriers becomes really critical, we have to actually work together to make sure all three of these issues are addressed so that everybody can have access.

Remote Monitoring

/in , , , , , , , /by

Download This Guide

TelemEDucation_Remote Monitoring

Download This Guide

Will Telemedicine Improve My Quality of Life with CLL?

/in , , , , , , /by

Will Telemedicine Improve My Quality of Life with CLL? from Patient Empowerment Network on Vimeo.

How do chronic lymphocytic leukemia (CLL) patients and care partners feel about the impact of telemedicine on quality of life? Watch as a CLL patient and care partner, Bob and Susan, discuss how easier access to blood test results affects patient emotions before and during remote office visits.

See More From the CLL TelemEDucation Empowerment Resource Center

Related Resources:

 

Will Telemedicine Be a Long-Term Survivorship Tool for CLL Patients?

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

What CLL Symptoms Can Be Monitored via Telemedicine?

Transcript:

Susan Bottega: 

The role of telemed in terms of survivorship I think is a very, very interesting subject. CLL patients are living a very long life these days with the onset of the novel agents that are coming out. Quality of life becomes a very, very important subject for CLL patients. So much of their quality of life is diminished by the visits that they have to make into doctors’ offices.

The anguish that they spend the day before, the sleepless night that accompanies the doctor’s visit. I think that this is extremely important. You’re looking very possibly of at least two days taken out of your life, and if you’re making these visits on a monthly basis or bi-monthly basis or even tri-monthly basis, that’s a long period of time to take out of the span of your lifetime. And as we’re living longer, this becomes more and more important.

You want to have that quality of life, you want to be able to go on vacations. Your vacations can’t be postponed because you have a doctor’s appointment looming in the future. You can take your computer right along on vacation with you and share your vacation with your doctor.

Bob Bottega:

I like that.

Susan Bottega:

I think the anguish that you feel about blood tests is diminished by it. You don’t have to wait to get the results of your blood tests, your blood tests pop right up on your patient portal. You don’t have to sit there and wait in a doctor’s office until you see those results.

Once you see your doctor, you’ve already got your results and you’re calm about it, you’re relaxed because you know what the results are and you can discuss them without having to deal with the anxiety that comes with hearing, “Okay, my white blood cell count has gone up considerably, so how do I calm myself down to discuss this intelligently at this point in time when I’m emotionally so upset over it?” I think these are very, very important things about the quality of your life. How about you, Bob?

Bob Bottega:

I think you said it all.

Susan Bottega:

Don’t I always? (laughter)

TelemEDicine ToolBox Visit Checklist

/in , , , , , , , /by

Download This Guide

CLL TelemEDucation Toolbox_Visit Checklist

Download This Guide

TelemEDicine ToolBox Glossary

/in , , , , , , , /by

Download This Guide

CLLTelemEDucation Toolbox_Glossary

Download This Guide

Will Telemedicine Give More CLL Patients Access to Clinical Trials?

/in , , , , , , , /by

Will Telemedicine Give More CLL Patients Access to Clinical Trials? from Patient Empowerment Network on Vimeo.

Though some with chronic lymphocytic leukemia (CLL) may have limited access to clinical trials at expert centers, telemedicine may change access for some patients. Watch as Dr. John Pagel shares how telemedicine might improve CLL clinical trial options. 

See More From the CLL TelemEDucation Empowerment Resource Center

Related Resources:

Will Telemedicine Activate More Remote Tools to Manage CLL?

 

Telemedicine & Second Opinion Options

How Will Telemedicine Impact Time-Limited Therapy in CLL?

Will Telemedicine Activate More Remote Tools to Manage CLL?

Transcript:

Stephanie Chuang: 

There is a lot of attention being paid to clinical trials and progress, and so how might telemedicine impact clinical trials when it comes to CLL therapy?

Dr. John Pagel: 

Well, I want to first tell the audience that clinical trials are critically important for many patients who have CLL. Clinical trials are really an opportunity to get something that’s better than the standard of care most often, or at least just as good and has the promise again, to be better. We have advanced major new paradigm changing therapies over the last many years through clinical trials, and now we’re looking at really exciting things like bispecific antibodies, newer generations of these targeted therapies that are better tolerated and perhaps even more active in resistant patients. And even as we talked about CAR T-cell therapies, those are all only available through clinical trials, and then that’ll continue to evolve and go on as well.
 
I would encourage patients to think about clinical trials, and because of telemedicine, now we’re going to be able to reach to other patients who are further away from an expert, perhaps where clinical trials are only available, and they can be then involved in one of those opportunities. Telemedicine, I hope, and I believe, will be a major advance for getting the cutting-edge, best therapies for patients who might be very far away from a very important expert center. 

Will Telemedicine Activate More Remote Tools to Manage CLL?

/in , , , , , , , /by

Will Telemedicine Activate More Remote Tools to Manage CLL? from Patient Empowerment Network on Vimeo.

As telemedicine has grown in the management of chronic lymphocytic leukemia (CLL) care, will its use bring other remote tools into patient care? Watch as CLL expert Dr. John Pagel explains.

See More From the CLL TelemEDucation Empowerment Resource Center

Related Resources:

 

Telemedicine & Second Opinion Options

How Will Telemedicine Impact Time-Limited Therapy in CLL?

Will Telemedicine Be Part of Routine Management for CLL?

Transcript:

Stephanie Chuang: 

Dr. Pagel, there are tools out there like video otoscopes, electronic stethoscopes, thermoscopes, retinal imaging systems, will CLL patients be able to have access to those tools for themselves one day, and on that note, what are the tools you believe will impact the future of CLL care?

Dr. John Pagel: 

Yeah, in fact, that’s really where we’re going. We do stuff like that already through the hospital. As you may know, as an example, if someone comes in with a cardiac condition, they need to be monitored remotely, they can’t stay in the hospital indefinitely we need to kind of know what’s happening, perhaps as an example with their heart rhythm. So they actually have tools where they can wear a little monitor even on their wrist that communicates with the doctor. So the doctor can see even in real time what’s happening with that individual patient. 

These types of tools are the future, and we’re not going away from them, we’re embracing them. We’re not there yet for routine standard care, especially in CLL but they will be simple things like heart rate, blood pressure measurements that are very simple and easy to do that not only are able to be read by the patient, but actually again, from a remote standpoint, be electronically downloaded and delivered to the physician, real time. That’s going to be important. And actually, I believe that we’ll even add advances for that in the blood work or other approaches in the near future. So just stay tuned we’re just scratching the surface there. 

Stephanie: 

Okay, so you’ve heard it here first from Dr. Pagel, stay tuned on this.