Posts

Which CLL Treatment is Right for You? Resource Guide

Download Guide

INSIST_CLL_Resourceguide_0504

Download Guide

Increasing Treatment Access for Every CLL Patient No Matter Location

Increasing Treatment Access for Every CLL Patient No Matter Location from Patient Empowerment Network on Vimeo.

How can CLL patients get the best treatment no matter where they live? In the era of COVID-19, where social distancing helps to avoid risk for acquiring infections, how can patients, care teams and health systems provide quality cancer care during the pandemic and beyond?

Watch as a panel of experts and a CLL patient discuss innovations around practical tools such as mobile applications that allow you to track your own information to help improve access to treatments. Learn about tips for self-advocacy, the importance of connecting with a CLL specialist and empowerment for increasing your digital literacy.

Related Resources:

Dr. John Pagel’s Top Tips for Preparing for Your CLL Telemedicine Visit

Telemedicine Challenges and Opportunities for CLL Patients

What CLL Symptoms Can Be Monitored via Telemedicine?


Transcript:

Dr. Farrukh Awan:

Hello and welcome. I’m Farrukh Awan from UT Southwestern in Dallas, Texas. I am a CLL doctor, I take care of patients with CLL. I also perform a lot of research around patients with blood cancers, leukemias and lymphomas, and with one goal to make small advances in the field and hopefully eventually cure this cancer. So, I’m very excited to be on today with all of you and look forward to having a nice discussion with all of you. I would like to start off by introducing the participants of this discussion with me, and I really thank them for their time this afternoon, and hopefully you guys can all enjoy them.

So, I’ll start off with Dr. Kathy Kim. Dr. Kathy Kim is an associate professor at UC Davis in California. She is a very well-established researcher there and the faculty member there, and she’s also the director of the Health Innovation Research Center in the UC Davis Center for Health and Technology. Welcome Dr. Kim. And I also am very happy and excited to be introducing Mr. William Marks, who’s a renowned Jazz musician, who happens to be one of our patients, and we’re very excited that he is joining us today from Dallas. So, thank you all for being here today, and we really want you guys to participate, send in your questions in the chat box or whatever you feel comfortable with, raise your hands, and we can definitely try to get to as many of them as possible.

So today, what we will talk about is how CLL patients can get the best possible care regardless of where they live, where they are, or regardless of the pandemic, we feel that there is a lot of disparity in the care that our patients can get, and we are all familiar with a lot of data that came out recently and also in the years past, which consistently showed the same trend that people in different parts of the country with access to different resources get different levels of care, which I feel that in 2021 it’s unfortunate because we feel that it shouldn’t matter where you are, the care should be consistent, unfortunately, that’s not the world we live in.

So, there are certain issues and concerns and challenges that we face, and we want to highlight some of those and talk about them during the next hour or so. We also obviously are dealing with a pandemic, which complicates the issue even more, you know for the first time, we’ve had an opportunity to deal with this issue of remote help or telehealth or remote monitoring of patients for an extended period of time.

So we’ve had the chance now, ’cause people used to talk about this all the time, but for the first time, we’ve had really an opportunity to really assess the situation and come up with solutions that work for as many patients as possible, so a lot of new things are happening in the field, and a lot of challenges that we have encountered over the last few months, and we welcome some of them, so we’ll talk about some practical tools, we’ll talk about some innovations, and hopefully we can have a nice conversation around that.

So, before we start formally, just a few housekeeping things, so like I said, 30 minutes in discussion of different topics that we felt might be a benefit to you, and then the rest of the time will be dedicated to your questions. Please remember to keep your questions generally broad, we don’t want to know your specific health information ’cause this would be shared as a video format, later on we will have a transcribed format of this presentation and this discussion. So, it will also be available on the website, so please don’t share anything that you would not want to share in a public forum.

I will also try to answer as many medical questions as possible without very specific references to your situation because there’s always so many things that we are not aware of, so don’t take this as formal medical advice, please. This is just a suggestion, and I’ll give you the suggestions to the best of our abilities, and the same goes for Mr. Marks and Dr. Kim. So, let’s start off, we’ll start off with the first domain that we kind of selected we felt would be helpful ’cause it’s very relevant to what we are going through right now, and that’s the COVID pandemic.

So COVID has been a major social inconvenience, it’s a very unfortunate situation that we’re all dealing with right now. Unfortunately, in our country, the incidence of new infections has gone down, but we’ve lost a lot of people and it’s happening all over the world. The third wave that people keep talking about or the second wave is happening as we speak in multiple parts of the world, and a lot of people are still dying unfortunately and still suffering from this, so we do see some light at the end of the tunnel hopefully, with more vaccinations, things will improve.

So, I think the problem that we have encountered during this era over the last year and a half or so, and possibly for the foreseeable future, is how can patients in this challenging time get the best care? How can healthcare teams and can physicians, nurses, APPS, nurse practitioners, physician assistants, how can they work as a team to provide the best possible care to our patients without compromising quality?

So, we will start off with Mr. Marks, and let’s see what his journey has been like, ’cause we kind of know that he started before on his journey before the pandemic and during the pandemic. So, I guess, why don’t we start off with you, William, and see how you want to capture your journey, what happened with you, how you felt about the changing dynamics of a patient-physician relationship, so let’s start off with you and then see what you feel has happened and impacted you during this pandemic?

Mr. William Marks:

Well, my journey started around 2015, real quick, briefly, I was healthy, I went to my doctor every year, got a physical. At this physical, my doctor called me back and told me I needed to come back and get other further blood work and long story short it started my CLL journey. I had a physician, my physician referred me to an oncologist, and I already made up my mind how I wanted my treatment to go, and they wanted to start a treatment on me that I just was not really ready to agree to.

And so, I had a friend that was a physician, and he referred me to Dr. Froehlich at UT Southwestern and he immediately agreed with me and thought, we should wait on treatment for a while because I had no signs of CLL at that time, and then Dr. Awan came about, and what I loved about Dr. Awan is, I did tell him how I felt about what my treatment should be, what I really didn’t want to get into, but he told me that he really didn’t want the treatment, wanted me to take treatment that I thought he was going to tell me I needed. He thought that we needed to wait a while, and so we waited until around I think Dr. Awan, 2017 or 2018, then he started experimental treatment on me and it really works for me, and he can explain to how it has been successful for me. But you have to trust the doctor.

And also, during the pandemic, I had such a trust in my doctor that talking to him via ZOOM on some of my patient visits was no problem for me, and so that’s kind of my journey. I had an oncologist, they wanted to do a treatment on me that I really didn’t agree with, and I found a doctor who first started out saying, “We don’t want to do this right now, we just want to kind of see what happens” and then to me, it turned out successful.

Dr. Farrukh Awan:

So, what I’m hearing you say is that you would recommend that anyone with CLL should at least try to get a second opinion from a person who specializes in the field, is that accurate?

Mr. William Marks:

Very accurate, very accurate. And whatever your belief system was, you know there are certain treatments out there that I just didn’t believe that I wanted to go through at first, and it’s a choice, and I don’t know Dr. Awan, if you really wanted me to delve into that or not, and you know but he told me before I even said that, and it just made me feel like he’s the doctor for me, he feels the same way I do, and I haven’t even told me the idea, so it’s very important that on this journey that you pick a physician that you can 100% trust.

Dr. Farrukh Awan:

So, I think just a little bit of a background, he mentioned that he’s on an experimental therapy, and just to clarify that a little bit more, Mr. Marks got on a clinical trial with a new combination of immune therapy, which worked out very nicely for him. So that’s another pitch for asking about the clinical trial as a patient. I think patients need to be their own advocates; they need to ask for those. Push the doctor a little bit.

Had he not pushed the first doctor, he probably would have ended up with chemotherapy. Now, some people can argue that that may not be necessarily the wrong thing to do, but we have other options which might be even better, or other options which are definitely less toxic, so pushing us, if he pushes me and if my patients pushed me, it pushes me to find the next best thing, so I think it’s a mutual thing, I benefit from patients like him, and hopefully our patients benefit from the doctor being engaged and receptive to their needs.

Dr. Farrukh Awan:

So, I completely agree with this. I think we’ve seen this over and over again, that sometimes if you’re getting a certain plan made already, and if you have any doubts, any questions, and if you feel that you read somewhere about some other thing, you should at the very least, ask the question and you should always make an effort to find a CLL specialist who might be close to you, and if there isn’t a CLL specialist close to you, it’s always an option right now to ask for telehealth with a doctor who might be a couple of hours away or in another state.

Because we now have access to those resources.

So, this is the nice segue, so we’ll get Dr. Kim in next. You know, with so many patients nowadays who are worried about their cancer care and how that will continue, and especially now with remote monitoring. How, what kind of tools do you have deployed and used, what would be your recommendations for us and how we can make us some of these new innovations and new methods to provide the best care for our patients?

Dr. Kathy Kim:

Oh, thank you so much, and I’m glad to hear where this conversation started with you, Dr. Awan and Mr. Marks, because I think even when you’re thinking about using technology, again, it’s not one-size-fits all, it is what the provider is comfortable with and what the patient is comfortable with, and what you two can work together to improve your care. So, I think there are a lot of innovations that have been developed over many years, but this past year under COVID, we saw an acceleration of people adopting them because it was out of necessity that people didn’t come in to a setting where they might potentially be infected or to infect others.

So, we certainly saw a huge increase in telehealth, which has been virtual visits, like we’re doing right now, we are virtually visiting with each other or telephone visits, so there’s been a huge upsurge in the number of hospitals and clinics and practices that have been able to implement telehealth with their patients. But there are other tools that again, have been in development that are now starting to take off under the last year, and those are remote patient monitoring devices, these are either specific medical devices, like blood pressure machines, glucose meters, some heart monitors, sleep monitors, you know things that, devices that check your oxygen saturation.

So, there are many medical devices that are for use in the home, that are either covered by insurance or people can buy them at the drug store, and what has really come about this year is the ability to connect the data from the device you have in your home to your provider, so that’s been in place, but we really haven’t implemented it very many places, and now lots of places are allowing that connection to happen. So, the patient can use the device in their home and get it connected to the internet and have it sent to the hospital or to their doctor, so their doctor can be watching the data and also monitoring them, so that’s one really wonderful piece of progress that we’ve had in the past year. I would say the third area that again, has been around for a while but people haven’t used it so much has been mobile applications.

Dr. Kathy Kim:

So, these are basically software that you can run on your smartphone or you can run it on a tablet or a computer that let you track your own information. So, I know CLL patients and many cancer patients have lots of documents from all the treatments, from all the visits that they have had, and it’s a challenge to manage all those medical records because you might go to multiple places, right? You’re not always going to the same place.

So, now there are many applications that are integrated with the record systems that your hospital or doctor has, where you can aggregate all of your records in one place, and that way when you go to talk to another provider or have this second opinion or a consult, you have access to all your records that you can share. And then you can also track things that are important to you, so maybe you want to track how I feel, what my symptoms are under certain kinds of medications or when I do more physical activity, do I get more tired or do I actually feel better, you know track and by taking my other medications, and for many of us, just remembering to take your medications every day is hard enough if you have several medications and they’re at different times, you might not remember, did I take that one already or do I still need to take it?

And so, these applications can also set up your medication schedule and help you to track whether you’ve taken them or not, so there are lots of these tools now available where you can start to manage all of these things and share that information with your doctor.

Dr. Farrukh Awan:

I really like how you went through all of them, couple of things that I have noticed, and maybe you can comment on this too, one is, what’s the financial cost to having access to those tools? So that’s the first thing. 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. Kathy 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 plan, 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, those, 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 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 the 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.

Dr. Farrukh Awan:

So, you know, excellent points. And thank you for sharing with us. I think that what I would like to stress is, patients need to be advocates for themselves, and if you are having issues or difficulty in connecting with your provider via these remote tools that we have, like Dr. Kim mentioned, we have access to resources that can be provided to our patients in any major cancer center, any major university setting, and a lot of larger practices have access to these resources that can provide these facilities for our patients, so that it makes it maybe less burdensome, more accessible and people can avail those resources and get benefit from them. So, let’s go to Mr. Marks, so what about your journey?

‘Cause you started off by being able to see the doctor in person, you know somebody who can feel you on lymph nodes, you can feel your spleen and see how big they are, and then to go from that to being on video, obviously, I’m assuming that prior to the pandemic, you did not have a lot of interaction with this video platforms for medicine encounters. So how was your journey? Did you have a hard time in dealing with that or getting used to it? How did you open it?

Mr. William Marks:

I really didn’t have a hard time with it. Under the circumstances due to COVID, I understood that we have to go this route, but I would go to a facility to get my blood work done, you would read my blood work and over video you would tell me how my blood work was going, and it just gave me a sense of comfort and ease. It’s already stressful to go through a pandemic for all of us, but to also be dealing with CLL at the same time can be pretty traumatic for some patients, so I’m saying it was pretty comfortable for me because I knew I could go get my blood work done, you could read my blood work, and you could talk to me about what, you could assess it and tell me what I needed to do. So, it was really a comforting thing for me.

Dr. Farrukh Awan:

Awesome, so that’s always great to hear. And I would also like to add that a lot of times in certain situations, my patients are not comfortable with using the platform, they don’t know despite all our best efforts, and in those cases, I encourage them to at least talk to me on the phone, make an appointment, talk to me, so that way you can at least get undivided attention. We can talk about your symptoms, and at the very least, we can say, okay fine, you can go to a lab for blood work close to home, and then we can at least look at the blood work.

I can talk about the symptoms, I can talk about if you feel a new knot or if you feel that you have another new lump or bump, so those are things that I do encourage that at the very least, there are ways to connect via telephone, the old-fashioned way nowadays. And that can also provide some comfort to our patients and they can also benefit from using this old-fashioned tool, so I think this is also, this is great. So, let’s keep going on these and access to care. Another issue that we have seen is that some of our patients and we live in a town that has a substantial percentage of Hispanic-speaking or Spanish-speaking people, so we actually have access to a lot of resources and a lot of options for those patients, but there might be some limitations in people who don’t necessarily speak English as the first language, so what kind of tools do we have for those people, what kind of resources can they access to? So, Dr. Kim, anything for those patients?

Dr. Kathy Kim:

Yes, and we have really made an effort in our own research to any of the resources that we provide, the mobile applications that we use are available in multiple languages, and I will say Spanish is the most common one that we are able to support. Of course, there are many, many languages spoken in the United States, beyond English and Spanish that we do, we are challenged when we try to find other resources or applications that can be in Chinese and Korean and in other languages. It’s really challenging.

So, in our own work, we have developed applications, and this is in research, so these are not things that are necessarily available in practice. We have developed applications for example, for care coordination for patients undergoing chemotherapy or to support shared decision-making at the beginning of your cancer journey between a patient and their family and a clinician, and when we develop those applications, as I said, we, obviously, I don’t speak Spanish, I only speak English, so I’m limited as to what I can develop. I can develop it in English, but then we always try to co-design it with clinicians who speak that language and with patients, so we do a lot of co-design with patients so that when we create it we’re making sure that it seems appropriate when it’s produced in other languages, and then we always test it with people who are native speakers in that language as well, so that’s one.

So many of the educational resources, our website information, our mobile applications, there is no reason why we can’t have those available in multiple languages. I think it is more challenging when you’re trying to build a relationship with a provider, with your doctor or with your nurse, or nurse practitioner and the patient don’t speak the same language, and then we have to rely on interpreter services. And I will say that that has not quite made the leap that we’d hoped with telehealth, to integrate an interpreter into your telehealth visit is quite challenging, and I’ve heard of doctors and patients being on a televisit and then the doctor calls the interpreter on their cell phone and tries to put that speaker up to the speaker on the computer, and that it’s not the best experience for anybody. So, that is an area that we would really like to work on, how do you have interpreter services really integrated into telehealth so it’s smooth for everybody.

Dr. Farrukh Awan:

And let me share my experience, just this week, actually, on Monday, I was in clinic and we frequently have patients who speak Spanish, and we have in-person Spanish interpreters that are readily available, so one of my patients was a Spanish speaker, so I had the interpreter in the room with me, so that interaction went really well, the patient’s daughter was also obviously able to interpret some of that, so it was a fairly easy conversation, we explained, we talked about treatment options and what the plan is, so that went really well, My next patient was a Vietnamese speaking patient, so we don’t have those in person, so my nurse got me this iPad, which was on a mount, it’s like a dolly that can go from room to room, and I turned it on and I was expecting some issues and they basically had a screen for me saying what language do you want, and I said Vietnamese, and then literally 30 seconds I was connected to a Vietnamese speaking interpreter, and they were able to see me, see the patient and the patient was able to see them. So, it was almost like having an interpreter in the room.

And my third patient, this is where it got interesting, ’cause I did not think that I would have that there, ’cause they spoke Macedonian, ’cause they’re from Bosnia and that was interesting, very nice people, but they just don’t speak English, so I got on the same platform and I hit the other button and they said, what language do you want? And I said, Macedonian, and they connected me to a Macedonian speaker, and it was actually pretty straight forward, and I think the patients appreciate it, I think that the family members appreciate it if you talk in their own language. I feel that most of patients in that setting are able to understand some English, but if we try to converse, I feel that sometimes the message that I’m trying to convey may not get through to them like I would like to, and I think that’s why it’s always good to have an interpreter, even if the family member is there in the room? I think it always helps to have an interpreter in the room, in the event that you have to explain certain medical terminology, so my experience with this one application that our hospital subscribes to was very, very good, so I did not have to hold up my phone like Dr. Kim was mentioning. I hate that.

And to communicate to the patients real-time with the person who was actually able to see all of us, so that was my experience recently, and I also found out that actually there are certain apps that if I want to print out a certain form or a certain patient education material and give it to the patient, okay, fine, this is the treatment you’re getting, these are the side effects, this is what to expect, there are options for translating it because they are already translated.

You just hit the language you want, and that prints out the material in that language and you can give it to the patient to read, and I feel that that was a good resource to have. Similarly, being involved in multiple clinical trials, I feel that that is sometimes challenging option for a lot of patients, but I just want to reassure everyone that all you have to do is ask. You can ask for a form in a specific language and it’s my responsibility, it’s my job to make sure that that translation is available to you so you can read it in your own language, and that is a service that is provided routinely by our cancer center, and I’m sure by a lot of other major academic centers and cancer centers in the country.

So, just I’m trying to wrap this up. I think there is a lot of really exciting things happening in the field, and we would like to get to some of these questions in a little bit, but before we do that, I wanted to ask, William, one thing that we run into is, is that as a patient, when you go in and see a doctor, you are likely to be overwhelmed or intimidated by that person in the white coat, and if the doctor comes in and say, Hey, Mr. Marks, you need X, Y, Z chemotherapy, how do you say no to that? How do you get out of that situation in a nice way, so you don’t offend anyone or do you even care? How was … you changed doctors and you sought another opinion, which is a very difficult thing to do for a lot of patients. How did you manage that? Was it your experience in the healthcare field? Or what made you do that?

Mr. William Marks:

Just a feeling that I had. A feeling that I had on the service that I was getting, and I had told my family when I was diagnosed with CLL some of the treatment that I would not take. And when this other doctor just right off the back said, we need to start you with this treatment, I’m like, well, I have no symptoms, I had no swollen lymph nodes at the time, I’m like, I don’t think that’s good for my body to start this off right now, what will my future be? So, I just quit going, I just quit going to that doctor and researched and asked questions and found the doctor that was right for me. So, I would tell anybody, this is your life. And when I was diagnosed will CLL, I made up in my mind that I was going to fight it, it wasn’t a death sentence for me, and I was going to find the best care I could, and that’s what I did and I think it worked out real well for me.

Dr. Farrukh Awan:

Awesome. So, I think that we cannot stress that enough, it has been studied extensively, it has been shown consistently, it has not just been shown for CLL. It has been shown for breast cancer, it has been shown for prostate cancer, so to give you examples very quickly, the prostate surgeon who does a higher volume of surgeries through a robot or robotic prostatectomy is what it’s called, those doctors who do 100 or more surgeries in a year have better outcomes, similarly for breast cancer patients, if they get care under a best breast cancer specialist have better outcome.

Similarly, for CLL, it has been shown over and over again, that if you go to a CLL specialist or somebody who specializes in that field, you not only get tested better, but you also have better survival outcomes, which is very hard to show in a cancer that usually takes a long time to cause problems like prostate cancer or CLL, it’s the same because these are chronic cancers. They can go on for a long time, but even in that setting, if you get taken care of by a CLL doctor, it has clearly been shown that your survival is better as compared to when you’re taking care of a very competent non-CLL doctor.

So, it’s not necessarily anything wrong with the doctor, it’s just that the guy who’s doing this every day, day in and day out and that’s the only thing he does. There are teams of people around us who specialize in this, my nurses see only patients like you, my dermatology sees only patients like you with CLL. My pathologist sees anything, so my whole team is very used to taking care of a patient in that setting, and I feel that even if it’s not me, it’s my whole team that provides the care that is needed for the patient, and I think that’s the whole point.

That’s where the specialist comes in, not saying anything bad about the doctor that sees every cancer, but they just do not have the volume of patients with your disease to be experts in that, because CLL is not a common mission, it is the most common leukemia, but it’s definitely not the most common cancer, it’s not even in the top five. So, you know the most common patients we will see is breast cancer, lung cancer, colon cancer, prostate cancer, so the general oncologist, that’s what you will see, and once every three or four months, they will see a patient with CLL versus in my clinic, I will see 40 patients a week with CLL. So completely different ball game.

This is why patients need to be advocates for themselves, push the doctors a little bit and hopefully get better care. So, that will transition to some of the questions that we have, can Dr. Kim, any insights about non-tech tools, born out of the pandemic that might be a model for future cancer care? That’s interesting, ’cause I feel that we may never get, go back to the pre-COVID era, so people have started calling it BC or AC, before COVID, after COVID. I don’t always like connecting to the popular platforms and would like to explore other easy to use tools. So, Dr. Kim, what do you have to say about that?

Dr. Kathy Kim:

Yeah, there are a number of tools. First, I want to re-emphasize something that both of you have said, which is, patients should be advocates and they should ask, what can you give me that can help me through this process, and what tools do you have for me to communicate and stay connected with my doctor? So, you should ask, are there ways for me to get in touch that are not calling, just when the clinic is open, do you have a secure messaging system? Can I message through the patient portal?

Do you have an app that’s available for that patient portal that I can download? Do you have any other research studies where they’re trying as the same way you said patients should ask other clinical trials, are there research studies using technology for cancer patients? So as much as outreach as we do to try to recruit patients into our technology trials, oftentimes somehow patients don’t hear about it, so if you ask and you’re interested, is there a study like that where I can get access to technology to try it out, to see if it will help.

So, you should definitely be an advocate, but I think some specific tools that patients should be asking about that are already available are things like, how can I get an electronic copy of my care plan? Can I get that through the portal or do you have an app where I can download my actual care plan? How do I get electronic copies of my medical records?

Where can I get them? And how can I store them safely? How can I connect to other patients in my area? Do you have an online patient support group? Do you have any services at the hospital where you connect patients like me as close as possible to the kind of patient I am, that you can make a match for me to talk to someone by using either ZOOM like this or an online support group or just one-on-one match maybe introducing by email.

These are all technological tools that already exist that are not, that should not take a huge amount of time for someone to learn a new technology, but you want to make sure that it’s something that your hospital and your provider feel comfortable have tried and know that it’s secure and safe and useful. You don’t want to go off and do something that your provider has no connection to it, you really want to keep these as integrated as possible, and in that way, I think in the future, we won’t just rely on Mr. Marks, you have to come in to the hospital for every single thing. We want to give you all these tools, and then you and your doctor can decide which things you really have to come in person for and which things you can access online.

And so that is the conversation that every time you go talk to a new provider or go to a new hospital or clinic, you should ask, what technologies do you have that are available to the patients? And that that’s how I think we’re going to push forward our new model of cancer care, which I will hope will use the technology to allow patients to collaborate with their healthcare team more easily and more seamlessly and in a way that’s safe and secure.

Dr. Farrukh Awan:

This partly answers the question that Christine raised, that she’s in Hawaii and she wanted to get an opinion at California, and that insurance company denied her referral to the doctor in California, so for Christine, what I would say is exactly like Dr. Kim was saying that we should definitely ask your insurance company what kind of tools you have for remote encounter, I think you should press them a little bit, and if they say absolutely not, we are not covering that. So, then I think in that case, the doctor sometimes can make a suggestion or write a small note to the insurance company that I would be okay with sending the patient for a second opinion.

The third thing you could do is there are lots of societies now in groups now, where you can ask for a remote consultation, and I actually do that for my patients, I get invites from different groups and they say, okay, fine, doctor, can you set up a 15, 30-minute telephone consult to a third party. So, they don’t charge you anything. They don’t charge me anything, they just set up a time and I volunteer my time, and I can connect with my patients in New York and wherever they are, and then if they decide that they want to come down, that’s up to them if insurance approves it, if they want to get care locally, that’s fine, but at the very least, that allows you to talk to somebody face-to-face, they can talk to you about your specific situation, they can suggest what kind of tests you might benefit from.

So, there are all of these tools that are available, I think you just have to search for them a little bit on the Internet at these different societies which provide that service of remote consultation. I know that I do that. The other question, I think they’re all similar to these questions, and I’ll try to go through them quickly, is that well, if I’m sick, what happens if I’m far away? So, a lot of times, we can call in prescriptions and medicines on the phone to prevent you from having symptoms from the disease, and that can be used at home. It’s always good to have a local doctor or a primary care doctor close to where you are, so in the event that you have to get admitted to the local hospital, you have that connection with them.

So, it’s always nice to have one quarterback directing the care of your cancer, but at the same time, having somebody local would also be helpful in these emergencies, hopefully, we won’t be able to have the way the treatment is evolving, I think you would have less and less of those problems, because treatments are so well tolerated, but occasionally, obviously, you can have problems which might need local consultation, and that’s perfectly fine.

We always transfer our patients to the main center once they get admitted to the local hospital for any reason, if that’s required. So, we can work very closely with the local team, and I think that’s really what you want, you want a doctor who’s willing and able to do that. And similarly for CAR-T patients, there was another question that was asked. CAR-T is much more complicated than your regular chemotherapy or immune therapy or the new molecules that we have. I think that’s something that we would like to stress that for CAR-T therapy, since it’s so specialized, it’s always important to have the guy who did it call the shots because testing is specific, the management complications are very unique to CAR-T, so I think that is an option for remote monitoring for those patients but they have to be very closely followed, we can do that.

And so similarly, I feel that right now with the way things are, it should not matter if you’re in a rural area or an urban area, I feel that everyone should have access to all the modern therapies, and people should be able to benefit from them equally. You just have to ask, and there are experts in pretty much every state, and if your state doesn’t have an expert, you can try this remote or remote consultation business.

And then one last thing that I would like Mr. Marks to chime in this is how it works. So, when do you know when to get help? So how did you know that you needed help for your CLL when you did take the decision to go ahead with treatment, obviously one part is the physician telling you but what about your own self, how were you able to know on your own that I think I might be getting to the point where I need to do treatment?

Mr. William Marks:

Well, I started from the beginning, I started doing everything. I started reading everything I could, I started trying to research everything, I changed my eating habits, I lost weight, I did everything I could personally, but I knew that the CLL that I had, I could not conquer by myself and alone. And so that’s when I knew, you can do everything you can, you can take all the herbs and supplements and everything you can, but then CLL is something that you really like you said, you need someone who specializes in it to know. And like I’m saying Dr. Awan you can let them know how I’m doing right now. I know HIPAA and all that, but I’m really doing real well after six years, and I do believe that Dr. Awan saved my life.

Dr. Farrukh Awan:

Well, thank you for that compliment. I think we’re just a tool in this whole process, but my suggestion and recommendation to everyone is, it’s half and half, it’s 50/50, it’s a partnership. Half of the times it’s the patient listening to their body, looking at the lumps, seeing how they feel, and half the time it’s us looking at the blood work, looking at the lymph node size, the spleen and all of that stuff and putting it all together before we make a decision. So, these decisions are not made in isolation. It has to be made as a team. And this is exactly where trust comes in. So, with that, we will try to wrap it up, and so any last thoughts, we’ll start with Dr. Kim and then William, I’ll ask you to just give your thoughts so that our audience can benefit from those.

Dr. Kathy Kim:

Thank you. It’s really been a pleasure to be part of this conversation with all of you, I think my last thought is really for patients to see technology as a tool that can help you communicate, organize information about your health and be as proactive as possible for the things that you can control, as Mr. Marks just talked about all the things that you can do to improve your health. But be an advocate for yourself and ask your hospital, your doctor, your provider organization, what technologies can you give to me, what technologies can you offer me, and even if they don’t have a whole lot, at least they know that you want it, and then they may then invest in tools for patients like yourself, so first, use the technology that you’re comfortable that your doctor is comfortable with, and second, be an advocate and demand the things that you want to have access to.

Mr. William Marks:

Well, I would just like to tell everybody, first of all, thank you Dr Awan for having me on this panel. Dr. Awan and his staff have been just outstanding for me. My diagnosis is positive at a six-year stent with CLL. I do believe in my heart, I would live a very long life, and I don’t believe that I would have if I hadn’t found the right doctor that had the right plan for me. So, just to make sure that you know that you get the right doctor for you that you can trust, because you have to have 100% trust in your physicians, and I do have that in my doctor. So, I have a very prognosis, CLL is not your ending, I’m telling you, I’m a believer that you can conquer anything if you believe that you can, and I’m on that path now, so I just like to close with that.

Dr. Farrukh Awan:

Awesome, and with that I would like to thank everyone for tuning into the program today, and as I mentioned earlier, we will break this down into small segments, and recording of this program will be available for people who might want to listen to it at a later time in smaller clips, and that will be available at the Patient Empowerment Network’s website, and if you like to watch again, it should be there. So, thank you for joining us today. I wish you all the best of health and good afternoon and I’m Farrukh Awan from Dallas, Texas so goodbye.

How Can CLL Patients Be Active in Their Care Decisions?

How Can CLL Patients Be Active in Their Care Decisions? from Patient Empowerment Network on Vimeo.

How can chronic lymphocytic leukemia (CLL) patients take a more active role in their care decisions? Dr. Matthew Davids details considerations for CLL treatment and explains ways that patients can take action to ensure their patient voice is heard for their 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.

See More from Engage CLL


Related Resources:

 

Who Is on a Patient’s CLL Care Team?

Transcript:

Katherine:

Lately we’ve been hearing the term “shared decision-making,” which basically means that patients and clinicians collaborate to make healthcare decisions.

And it can help patients take a more active role in their care. What are your thoughts, Dr. Davids, on how best to make this process work?

Dr. Davids:

Yeah, I fully support that model. I think for most patients it’s very helpful to be an important decision-maker. Really the patient is the ultimate decision-maker to say what they want for their own treatment. And sometimes it’s hard for me to predict what a patient will want for themselves, so I see my role for most patients as providing the information that they need to make the best decision possible for themselves.

I do try to steer patients a bit in the directions that I think they should be thinking. I’m not going to necessarily present a laundry list of things to patients. I’m going to try to narrow it down to what I think are the most reasonable choices for a patient to make.

I feel that’s part of my job. I do still have patients who just say, “Just tell me what to do,” and I respect that, too. Not all patients want to be part of shared decision making, and they just want me to decide, and that’s fine. But I do find that most patients like the idea of having a voice and being the one to decide, and that way I can help to guide them, but ultimately, it’s up to them.

Katherine:

Well, speaking of patients having a voice, are there questions that patients should consider asking when they’re thinking about a proposed treatment plan?

Dr. Davids:

Yeah. I think some of the key ones revolve around basic stuff, but sometimes it’s hard to think of it in the moment. But thinking about, what are the risks of this therapy? What are the specific side effects that are most common? When you look at a package insert or you look at a clinical trial consent form, you’re going to see 100 different side effects listed. I always promise patients, “You won’t have every single side effect that’s listed here, but you may have a couple of them.” And again, my role often is to identify which are the more common side effects that we see and how can those be managed?

And then, I think often you’re just asking simply about what are the potential benefits of this therapy? What are the odds that I’m going to get into remission? How long is this remission likely to last?

And then, something that is often challenging for patients to think about – it can be challenging for me as well – is to think about what’s the next step? So, I think a good question to ask is, “If I choose Therapy A, what happens if I need therapy again in a few years? What are the options at that point?” because we’ve been talking so far mostly about what we call frontline therapy, making that initial choice of treatment. But then, once you get into what we call the relapse setting, a lot of the decision of what to receive at that point depends on what you got as the first therapy. And so, trying to think at least one step ahead as to what the next options are I think can be helpful, certainly for the physicians but also for the patients.

Katherine:

Do you have any advice to help patients speak up when they’re feeling like their voice isn’t being heard?

Dr. Davids:

That’s always a challenging situation, but I encourage patients not to be shy about asking questions.

There’s often an imbalance in terms of the information where the oncologist may know more than the patient about a particular condition. And so, I think reading up and trying to educate yourself as much as you can. Whenever possible, including a family member or friend as part of the visit to also help advocate for you. And then, if you’re not being heard the way that you think you should be, thinking about seeking out another provider who may be able to listen more.

And sometimes that can be again helpful to have a touchpoint with a CLL specialist who may be able to reinforce some of what you’re thinking. If what you’re reading online or seeing online is different from what your oncologist is telling you, that may be a sign that it’s good to get a second opinion and just make sure you’re on the right track.

What Are the Goals of CLL Treatment?

What Are the Goals of CLL Treatment? from Patient Empowerment Network on Vimeo.

What are some of the goals of chronic lymphocytic leukemia (CLL) treatment? Dr. Matthew Davids outlines some different treatment goals and how the goals are impacted by a patient’s age and other considerations.

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

See More from Engage CLL


Related Resources:

 

Who Is on a Patient’s CLL Care Team?

Transcript:

Katherine:

With CLL, what are the goals of treatment?

Dr. Davids:

I like to say to patients, “The goals are to make you live longer and live better.” You want to obviously have treatments that prolong life, but you also want to have treatments that are helping with symptoms, and giving patients more energy, and making them feel better, and protecting them from some of the risks of the disease. And so, I think the goals do vary a bit based on the stage of life that patients are at.

I see a lot of patients in their 70s and 80s, and in those patient’s symptom control, having the disease be in a good remission, allowing them to live their life is a good goal. I sometimes see patients in their 40s and 50s, and some of those patients want to be a bit more aggressive and try to do a strategy that will get them a very long-term remission, and even potentially explore potentially curative strategies.

If I have a higher-risk patient with deletion 17p who’s young and fit, and they’ve already had some of the novel treatments, that’s where we start thinking about clinical trials of some of the cellular therapies like CAR-T cells that people may have heard of where you use the T cells from the patient to try to use that as a therapy to kill off the disease. Or even a bone marrow transplant is something that we have used historically in CLL. We don’t use it as often now, but for younger patients with high-risk disease it’s still a consideration to try to achieve a cure of the CLL even though the risks of that are significant.

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.

See More from Engage CLL


Related Resources:

 

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.

An Overview of CLL Treatment Types

An Overview of CLL Treatment Types from Patient Empowerment Network on Vimeo.

What are the treatment types for chronic lymphocytic leukemia (CLL)? Dr. Matthew Davids details each type of treatment – and which type of patients some treatments may be most appropriate for. 

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

See More from Engage CLL


Related Resources:

 

How Can CLL Patients Be Active in Their Care Decisions?

Transcript:

Katherine:

Well, once it’s time to treat, of course, then it’s time to think about treatment options. Let’s walk through the types of treatments that are used today to treat CLL.

Dr. Davids:

As I alluded to before, we historically have had chemotherapy-based approaches to treat CLL. And that was an effective way to temporarily put the disease into remission, but it had a lot of side effects and inevitably the CLL would come back. And the challenge particularly with chemotherapy-based approaches it that when the CLL does come back after chemotherapy, it tends to behave more aggressively and be harder to treat.

So, there have been quite a few studies over the last few years trying to figure out ways that we can avoid using chemotherapy as the first treatment, and this can involve treatments such as monoclonal antibodies. People may have heard of rituximab or a newer drug, obinutuzumab. There are the inhibitors of the B-cell receptor pathway, and this is for example ibrutinib (Imbruvica), which targets a protein called BTK, also a newer one called acalabrutinib (Calquence), which targets BTK. And then, I mentioned at the beginning these fixed-duration therapies that stop after a period of time. Many of those are based on a newer oral drug called venetoclax (Venclexta), which when we give it as a first therapy, we give in combination with that antibody obinutuzumab (Gazyva).

So, a bit of an alphabet soup. I know it gets confusing with all the different treatments, but the good news for CLL patients is, 1.) we have a lot of options, which is great, 2.) we don’t necessarily need to use chemotherapy anymore, and in fact I use it pretty rarely these days. One situation where I do still consider chemotherapy is for younger patients – which in the CLL world is sort of under age 60 or so – if they have very favorable biology to the disease, in particular this mutated IGHV.

That’s a scenario where the older chemotherapy regimen, FCR, can be very effective. It’s a six-month treatment, and we have patients with those molecular characteristics who are now 12, almost 15 years out from their initial six months, and they’re still in a complete remission. So, many of those patients have been functionally cured of their CLL from the six months of treatment. But again, there are some risks to that approach. We worry about other cancers that may be more likely after receiving FCR. We worry about infections, and particularly in the COVID situation, we worry about COVID infection in patients on chemotherapy.

So, it’s been pretty rare that I’ve been using that approach these days. I’ve been opting more for the novel agent-based approaches. So, often now the conversation as an initial therapy comes down to, “Do you prefer more of a continuous treatment strategy with a BTK inhibitor drug like ibrutinib or acalabrutinib, or do you like the idea of a time-limited therapy with one year of venetoclax in combination with obinutuzumab?” And I would say there’s pros and cons to both approaches, and we don’t know which one is the optimal one for CLL patients to start with, but probably I think most patients at some point in their lifetime are going to need one therapy or the other.

So, maybe in the end it doesn’t matter too much which one you start with if you’re going to get both eventually anyway. But we don’t know that yet.

How Does CLL Progress? Understanding the Stages of CLL

How Does CLL Progress? Understanding the Stages of CLL from Patient Empowerment Network on Vimeo.

What are the specific stages of chronic lymphocytic leukemia (CLL), and how does CLL progress? Dr. Matthew Davids details the stages of CLL and indications for when it’s time to treat the condition.

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

See More from Engage CLL


Related Resources:

 

An Overview of CLL Treatment Types

Transcript:

Katherine:

Okay. So, how does CLL progress? When do you know when it’s time to treat?

Dr. Davids:

The stages of CLL involve the progression of the disease. When we first meet patients, often they only have cells circulating in the blood, and that’s called stage 0 disease. It’s one of the few cancers where there’s actually a Stage 0 before even Stage I, and the reason for that is that many patients can go for years on Stage 0 disease. But as the burden of the CLL cells begin to accumulate in the body they can start to collect in their lymph nodes, and the lymph nodes can start to swell up whether it’s in the neck or the armpits or elsewhere. That’s stage I disease.

They can accumulate in the spleen, which is an organ in the abdomen. It’s kind of a big filter for your bloodstream, and as the filter traps more of these lymphocytes the spleen can slowly enlarge over time. That’s stage II disease.

And then finally, the CLL cells can get into the bone marrow, which is like the factory for making your blood cells. And if the factory floor gets all gummed up with CLL cells it can’t make the normal red cells, that’s called anemia. Or it can’t make the normal platelet cells, that’s called thrombocytopenia. And when we start to see those more advanced stages III and IV of CLL, that usually does require treatment. And what the treatment does is it clears out the factory floor and it allows for the normal machinery to make the normal blood cells again. So, that’s one of the more common reasons why treatment is needed is due to anemia and low platelets. Second reason can be if the lymph nodes or spleen get so bulky that they’re uncomfortable or threatening organs internally. We want to treat before that becomes a real threat.

And then, the third thing that usually happens as the disease progresses, patients can develop some symptoms, what we call constitutional symptoms. These can be things like unintentional weight loss, drenching night sweats that are happening on a consistent basis, and those sorts of things. So, if that’s happening at the same time as these other factors are progressing, those would be reasons to treat.

And notice that one thing I did not say is the white blood cell count itself.

That’s a common misconception. Some people think that as the white blood cell count goes higher – and people use all different thresholds, 100, 200 – that by crossing that threshold you need to start treatment. And in fact, that’s not the case. We have many patients whose white blood cell count can get very high but then it can kind of level off and plateau for a period of several years, and as long as they don’t meet those other treatment indications, they don’t need to be treated just based on the white count alone.

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.

See More from Engage CLL


Related Resources:

 

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.

Who Is on a Patient’s CLL Care Team?

Who Is on a CLL Patient’s Care Team? from Patient Empowerment Network on Vimeo.

Who are the members on a chronic lymphocytic leukemia (CLL) patient’s care team? Dr. Matthew Davids explains the members of the healthcare team – and shares advice for ensuring the patient receives complete information for optimal 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.

See More from Engage CLL


Related Resources:

 

An Overview of CLL Treatment Types

Transcript:

Katherine:

When a person is diagnosed with CLL they have a whole healthcare team. Who’s typically on that team?

Dr. Davids:

It’s definitely a multidisciplinary team.

Usually there’s an oncologist-hematologist who’s leading the team as a physician, but there’s a very large team of other people who are involved, whether it’s an advanced practice person such as a nurse practitioner or a physician’s assistant. They’re often very closely involved with the day-to-day patient care. There’s nurse navigators in some places that can help with getting access to these novel agents and with looking into clinical trial opportunities. There are pharmacy folks who are very helpful sometimes in checking in on side effects, and advising on dosing, and so forth.

That’s more on the provider side of things. But, of course, the care team really includes the caregivers for the patient, whether it’s family members or friends, who are really a crucial part of this. The field is very complicated, and one of the challenges with COVID recently is that I’ve always invited family members and friends to come to visits with patients, because I do think it’s helpful to have many people listening. And that’s been hard because we’ve had to restrict visitors usually to either no visitors or one visitor because of COVID precautions.

Even if that’s the case, you can still have people dial in by phone or use technologies like FaceTime to try to have them there with you, because I think having that extra set of ears can be helpful as you hear all this information coming at you from your oncologist.

Recent Developments in CLL Treatment and Research

Recent Developments in CLL Treatment and Research from Patient Empowerment Network on Vimeo.

What are the latest developments in chronic lymphocytic leukemia (CLL) treatment and research? Dr. Matthew Davids summarizes the latest treatment news and goals of the treatments – and shares CLL resources for patient 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.

See More from Engage CLL


Related Resources:

 

Who Is on a Patient’s CLL Care Team?

Transcript:

Katherine:

Have there been any recent developments in CLL treatment and research that patients should know about?

Dr. Davids:

Yeah. We could spend a few hours on this, but I’ll try to summarize it. There are a lot of exciting developments in the field. I would say at a high level obviously, over the last decade the entire field of CLL treatment has been transformed. Whereas we only had chemotherapy-based approaches before, now we have a whole number of different drugs that we call novel agents. And the reason why their novel is that they target the CLL cells, but they spare the other cells in the body, so there’s less collateral damage there. What that means is that they have fewer side effects, and they’re more effective, so it’s really a win-win situation for patients.

There have kind of been two main approaches for this.

One is to start a novel agent drug and to continue it for as long as it’s helping, which fortunately for most patients is a long time, many years. And then, a newer approach is actually to do what’s called time-limited therapy where you start usually at least a couple of these different novel drugs together but hopefully achieve what we call a very deep remission, meaning excellent shrinkage of lymph nodes and improvement of blood counts and bone marrow disease. And by getting these very deep remissions the idea is we can do a finite period of treatment, whether it’s one year or two years, it kind of depends on the regimen. And then, stop therapy and hope that patients can then enjoy many years of remission while off therapy, which can be nice in terms of reducing side effects and costs and all these other things.

So, those are the biggest developments in the field right now, the continuous novel agent therapy and time-limited novel agent therapy. And a lot of the clinical trials that are getting off the ground now are starting to compare these two strategies to figure out really what’s the optimal way to treat CLL patients.

Katherine:

How can patients stay up-do-date on developments like these?

Dr. Davids:

It’s definitely challenging. It’s challenging even for us who are in the field to keep up with things on the academic side. I think for patients, seeking out patient-friendly sources of information on the web are helpful, but sometimes it can be hard to know what’s reliable information on the web. So websites like this and programs like this I think can be very helpful. Another resource that a lot of my patients find helpful is the CLL Society, so www.cllsociety.org. Brian Koffman really curates a lot of the new developments in the field on that website nicely. He interviews a lot of different CLL experts in this short format that can be very digestible for patients. Patient Power is another great website. So, there are a bunch of them out there, and I think those can be a great resource for our patients.

What Should CLL Patients Know About COVID-19 Vaccines?

What Should CLL Patients Know About COVID-19 Vaccines? from Patient Empowerment Network on Vimeo.

What should chronic lymphocytic leukemia (CLL) patients know about the COVID-19 vaccines? Dr. Matthew Davids shares information on COVID-19 vaccine safety and efficacy – and whether a specific vaccine is recommended for CLL patients.

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

See More from Engage CLL


Related Resources:

 

Who Is on a Patient’s CLL Care Team?

Transcript:

Katherine:

Let’s start with a question that’s on the mind of many of our audience members. Is the COVID-19 vaccine safe for CLL patients?

Dr. Davids:

Very timely question. The simple answer is yes. There are now actually three different vaccines that have been granted emergency use authorization by the FDA.

And I would say that so far, we’ve seen clinical trial evidence suggesting these are very safe vaccines in the general population.

Our own experience with our own CLL patients so far has also suggested safety, so I think it’s very important that our CLL patients get vaccinated as soon as they can. I think the bigger concern more than safety is on the efficacy side of the vaccine, meaning how effective are these vaccines going to be for CLL patients? That’s not something that we know yet from the larger clinical trials that have been done. So, those numbers you see quoted, 95 percent protective, that’s in the general populations.

We do worry a bit based on our experience with other vaccines in CLL patients that they may not be quite as effective, but we don’t know that yet. Fortunately, that’s something that we’re studying now, both at our center and in some nationwide efforts, to look for example at the antibody production that CLL patients can make before and after vaccination. I’m hopeful that over the next few months we’ll start to learn about how effective these vaccines are specifically for CLL patients.

We certainly expect they will have some benefit, so that’s why we recommend vaccination for all of our CLL patients. But once patients are vaccinated, it doesn’t give them a free pass to then take their masks off and go back to normal life. Particularly CLL patients I think need to be careful even after vaccination to continue to do social distancing, hand hygiene, and all these things.

Katherine:

Is there one type of vaccine that’s more suited for CLL patients?

Dr. Davids:

Nope. As far as we can tell, all three of the approved vaccines so far are safe and should have some good effects for CLL patients.

There’s no benefit of one versus the others, so the best one to get is the one that’s in your muscle and injected. Whatever you can get access to, that’s the best one for you.

How to Play an Active Role in Your CLL Treatment Decisions

How to Play an Active Role in Your CLL Treatment Decisions from Patient Empowerment Network on Vimeo.

How can you partner with your healthcare team to feel confident in your CLL decisions? In this webinar replay, Dr. Matthew Davids discusses CLL treatment approaches, developing research and tools for partnering with your healthcare team. Dr. Matthew Davids is the Director of Clinical Research in the Division of Lymphoma at Dana-Farber Cancer Institute.

Download Guide

See More from Engage CLL


Related Resources:

 

Which CLL Treatment Approach Could be Right for You?

Transcript:

Katherine:                  

Hello and welcome. I’m Katherine Banwell, your host for today’s program. Today we’re going to explore the factors that guide CLL treatment decisions, including your role in making those decisions. Before we meet our guest, let’s review a few important details. The reminder email you received about this program contains a link to program materials. If you haven’t already, click that link to access information to follow along during the webinar. And at the end of this program, you will receive a link to a program survey. This will allow you to provide feedback about your experience today, and it will help us plan future webinars.

Finally, before we get into the discussion, please remember that this is not a substitute for seeking medical advice. Refer to your own healthcare team. All right, let’s meet our guest today. Joining me is Dr. Matthew Davids. Dr. Davids, would you please introduce yourself?

Dr. Davids:                  

Hi, Katherine. Thanks so much for having me. It’s great to be with everyone today. I’m Matt Davids. I’m a CLL-focused physician based at Dana Farber Cancer Institute in Boston, and I’m also an associate professor of medicine at Harvard Medical School. And I get to wear many hats here. First and foremost, I take care of patients, particularly patients with CLL, but I also have some administrative roles. I direct our clinical research program in the lymphoma division. I also run a research laboratory focused on CLL and other lymphoid cancers, and I run about a dozen clinical trials mostly focused on developing new treatment options for patients with CLL.

Katherine:                  

Wow. Sounds like you’re a busy guy. I’m glad you have the time to join us today.

Dr. Davids:                  

My pleasure.

Katherine:                  

Let’s start with a question that’s on the mind of many of our audience members. Is the COVID-19 vaccine safe for CLL patients?

Dr. Davids:                 

Very timely question. The simple answer is yes. There are now actually three different vaccines that have been granted emergency use authorization by the FDA.

And I would say that so far, we’ve seen clinical trial evidence suggesting these are very safe vaccines in the general population.

Our own experience with our own CLL patients so far has also suggested safety, so I think it’s very important that our CLL patients get vaccinated as soon as they can. I think the bigger concern more than safety is on the efficacy side of the vaccine, meaning how effective are these vaccines going to be for CLL patients? That’s not something that we know yet from the larger clinical trials that have been done. So, those numbers you see quoted, 95 percent protective, that’s in the general populations.

We do worry a bit based on our experience with other vaccines in CLL patients that they may not be quite as effective, but we don’t know that yet. Fortunately, that’s something that we’re studying now, both at our center and in some nationwide efforts, to look for example at the antibody production that CLL patients can make before and after vaccination. I’m hopeful that over the next few months we’ll start to learn about how effective these vaccines are specifically for CLL patients.

We certainly expect they will have some benefit, so that’s why we recommend vaccination for all of our CLL patients. But once patients are vaccinated, it doesn’t give them a free pass to then take their masks off and go back to normal life. Particularly CLL patients I think need to be careful even after vaccination to continue to do social distancing, hand hygiene, and all these things.

Katherine:                  

Is there one type of vaccine that’s more suited for CLL patients?

Dr. Davids:                 

Nope. As far as we can tell, all three of the approved vaccines so far are safe and should have some good effects for CLL patients.

There’s no benefit of one versus the others, so the best one to get is the one that’s in your muscle and injected. Whatever you can get access to, that’s the best one for you.

Katherine:                  

Dr. Davids, have there been any recent developments in CLL treatment and research that patients should know about?

Dr. Davids:                 

Yeah. We could spend a few hours on this, but I’ll try to summarize it. There’s a lot of exciting developments in the field. and I think we’re going to get into some of the specific treatments in a few minutes, but I would say at a high level obviously, over the last decade the entire field of CLL treatment has been transformed. Whereas we only had chemotherapy-based approaches before, now we have a whole number of different drugs that we call novel agents. And the reason why they’re novel is that they target the CLL cells, but they spare the other cells in the body, so there’s less collateral damage there. What that means is that they have fewer side effects, and they’re more effective, so it’s really a win-win situation for patients.

There’s kind of been two main approaches for this.

One is to start a novel agent drug and to continue it for as long as it’s helping, which fortunately for most patients is a long time, many years. And then, a newer approach is actually to do what’s called time-limited therapy where you start usually at least a couple of these different novel drugs together but hopefully achieve what we call a very deep remission, meaning excellent shrinkage of lymph nodes and improvement of blood counts and bone marrow disease. And by getting these very deep remissions the idea is we can do a finite period of treatment, whether it’s one year or two years, it kind of depends on the regimen. And then, stop therapy and hope that patients can then enjoy many years of remission while off therapy, which can be nice in terms of reducing side effects and costs and all these other things.

So, those are the biggest developments in the field right now, the continuous novel agent therapy and time-limited novel agent therapy. And a lot of the clinical trials that are getting off the ground now are starting to compare these two strategies to figure out really what’s the optimal way to treat CLL patients.

Katherine:                  

How can patients stay up-do-date on developments like these?

Dr. Davids:                 

It’s definitely challenging. It’s challenging even for us who are in the field to keep up with things on the academic side. I think for patients, seeking out patient-friendly sources of information on the web are helpful, but sometimes it can be hard to know what’s reliable information on the web. So websites like this and programs like this I think can be very helpful. Another resource that a lot of my patients find helpful is the CLL Society, so www.cllsociety.org. Brian Koffman really curates a lot of the new developments in the field on that website nicely. He interviews a lot of different CLL experts in this short format that can be very digestible for patients. Patient Power is another great website. So, there are a bunch of them out there, and I think those can be a great resource for our patients.

Katherine:                  

When a person is diagnosed with CLL they have a whole healthcare team. Who’s typically on that team?

Dr. Davids:                 

It’s definitely a multidisciplinary team.

Usually there’s an oncologist-hematologist who’s leading the team as a physician, but there’s a very large team of other people who are involved, whether it’s an advanced practice person such as a nurse practitioner or a physician’s assistant. They’re often very closely involved with the day-to-day patient care. There’s nurse navigators in some places that can help with getting access to these novel agents and with looking into clinical trial opportunities. There’s pharmacy folks who are very helpful sometimes in checking in on side effects, and advising on dosing, and so forth.

That’s more on the provider side of things. But, of course, the care team really includes the caregivers for the patient, whether it’s family members or friends, who are really a crucial part of this. The field is very complicated, and one of the challenges with COVID recently is that I’ve always invited family members and friends to come to visits with patients, because I do think it’s helpful to have many people listening. And that’s been hard because we’ve had to restrict visitors usually to either no visitors or one visitor because of COVID precautions.

Even if that’s the case, you can still have people dial in by phone or use technologies like FaceTime to try to have them there with you, because I think having that extra set of ears can be helpful as you hear all this information coming at you from your oncologist.

Katherine:                  

Yeah, absolutely. So, it really does sound like it’s a whole team approach. 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, 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 bloodwork. 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 bloodwork.

Katherine:                  

Okay. So, how does CLL progress? When do you know when it’s time to treat?

Dr. Davids:                 

The stages of CLL involve the progression of the disease. When we first meet patients, often they only have cells circulating in the blood, and that’s called stage 0 disease. It’s one of the few cancers where there’s actually a Stage 0 before even Stage I, and the reason for that is that many patients can go for years on Stage 0 disease. But as the burden of the CLL cells begin to accumulate in the body they can start to collect in their lymph nodes, and the lymph nodes can start to swell up whether it’s in the neck or the armpits or elsewhere. That’s stage I disease.

They can accumulate in the spleen, which is an organ in the abdomen. It’s kind of a big filter for your bloodstream, and as the filter traps more of these lymphocytes the spleen can slowly enlarge over time. That’s stage II disease.

And then finally, the CLL cells can get into the bone marrow, which is like the factory for making your blood cells. And if the factory floor gets all gummed up with CLL cells it can’t make the normal red cells, that’s called anemia. Or it can’t make the normal platelet cells, that’s called thrombocytopenia. And when we start to see those more advanced stages III and IV of CLL, that usually does require treatment. And what the treatment does is it clears out the factory floor and it allows for the normal machinery to make the normal blood cells again. So, that’s one of the more common reasons why treatment is needed is due to anemia and low platelets. Second reason can be if the lymph nodes or spleen get so bulky that they’re uncomfortable or threatening organs internally. We want to treat before that becomes a real threat.

And then, the third thing that usually happens as the disease progresses, patients can develop some symptoms, what we call constitutional symptoms. These can be things like unintentional weight loss, drenching night sweats that are happening on a consistent basis, and those sorts of things. So, if that’s happening at the same time as these other factors are progressing, those would be reasons to treat.

And notice that one thing I did not say is the white blood cell count itself.

That’s a common misconception. Some people think that as the white blood cell count goes higher – and people use all different thresholds, 100, 200 – that by crossing that threshold you need to start treatment. And in fact, that’s not the case. We have many patients whose white blood cell count can get very high but then it can kind of level off and plateau for a period of several years, and as long as they don’t meet those other treatment indications, they don’t need to be treated just based on the white count alone.

Katherine:                  

Hmm, okay. Well, once it’s time to treat, of course then it’s time to think about treatment options. Let’s walk through the types of treatments that are used today to treat CLL.

Dr. Davids:                 

As I alluded to before, we historically have had chemotherapy-based approaches to treat CLL. And that was an effective way to temporarily put the disease into remission, but it had a lot of side effects and inevitably the CLL would come back. And the challenge particularly with chemotherapy-based approaches it that when the CLL does come back after chemotherapy, it tends to behave more aggressively and be harder to treat.

So, there have been quite a few studies over the last few years trying to figure out ways that we can avoid using chemotherapy as the first treatment, and this can involve treatments such as monoclonal antibodies. People may have heard of rituximab or a newer drug, obinutuzumab. There are the inhibitors of the B-cell receptor pathway, and this is for example ibrutinib, which targets a protein called BTK, also a newer one called acalabrutinib, which targets BTK. And then, I mentioned at the beginning these fixed-duration therapies that stop after a period of time. Many of those are based on a newer oral drug called venetoclax, which when we give it as a first therapy, we give in combination with that antibody obinutuzumab.

So, a bit of an alphabet soup. I know it gets confusing with all the different treatments, but the good news for CLL patients is, 1.) we have a lot of options, which is great, 2.) we don’t necessarily need to use chemotherapy anymore, and in fact I use it pretty rarely these days. One situation where I do still consider chemotherapy is for younger patients – which in the CLL world is sort of under age 60 or so – if they have very favorable biology to the disease, in particular this mutated IGHV.

That’s a scenario where the older chemotherapy regimen, FCR, can be very effective. It’s a six-month treatment, and we have patients with those molecular characteristics who are now 12, almost 15 years out from their initial six months, and they’re still in a complete remission. So, many of those patients have been functionally cured of their CLL from the six months of treatment. But again, there are some risks to that approach. We worry about other cancers that may be more likely after receiving FCR. We worry about infections, and particularly in the COVID situation, we worry about COVID infection in patients on chemotherapy.

So, it’s been pretty rare that I’ve been using that approach these days. I’ve been opting more for the novel agent-based approaches. So, often now the conversation as an initial therapy comes down to, “Do you prefer more of a continuous treatment strategy with a BTK inhibitor drug like ibrutinib or acalabrutinib, or do you like the idea of a time-limited therapy with one year of venetoclax in combination with obinutuzumab?” And I would say there’s pros and cons to both approaches, and we don’t know which one is the optimal one for CLL patients to start with, but probably I think most patients at some point in their lifetime are going to need one therapy or the other.

So, maybe in the end it doesn’t matter too much which one you start with if you’re going to get both eventually anyway. But we don’t know that yet.

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 regiments, 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.

Katherine:                  

With CLL, what are the goals of treatment?

Dr. Davids:                 

I like to say to patients, “The goals are to make you live longer and live better.” You want to obviously have treatments that prolong life, but you also want to have treatments that are helping with symptoms, and giving patients more energy, and making them feel better, and protecting them from some of the risks of the disease. And so, I think the goals do vary a bit based on the stage of life that patients are at.

I see a lot of patients in their 70s and 80s, and in those patient’s symptom control, having the disease be in a good remission, allowing them to live their life is a good goal. I sometimes see patients in their 40s and 50s, and some of those patients want to be a bit more aggressive and try to do a strategy that will get them a very long-term remission, and even potentially explore potentially curative strategies.

If I have a higher-risk patient with deletion 17p who’s young and fit, and they’ve already had some of the novel treatments, that’s where we start thinking about clinical trials of some of the cellular therapies like CAR-T cells that people may have heard of where you use the T cells from the patient to try to use that as a therapy to kill off the disease. Or even a bone marrow transplant is something that we have used historically in CLL. We don’t use it as often now, but for younger patients with high-risk disease it’s still a consideration to try to achieve a cure of the CLL even though the risks of that are significant.

It sounds like there are several factors to weigh then in making this decision. Lately we’ve been hearing the term “shared decision-making,” which basically means that patients and clinicians collaborate to make healthcare decisions.

And it can help patients take a more active role in their care. What are your thoughts, Dr. Davids, on how best to make this process work?

Dr. Davids:                 

Yeah, I fully support that model. I think for most patients it’s very helpful to be an important decision maker. Really the patient is the ultimate decision maker to say what they want for their own treatment. And sometimes it’s hard for me to predict what a patient will want for themselves, so I see my role for most patients as providing the information that they need to make the best decision possible for themselves.

I do try to steer patients a bit in the directions that I think they should be thinking. I’m not going to necessarily present a laundry list of things to patients. I’m going to try to narrow it down to what I think are the most reasonable choices for a patient to make.

I feel that’s part of my job. I do still have patients who just say, “Just tell me what to do,” and I respect that, too. Not all patients want to be part of shared decision making, and they just want me to decide, and that’s fine. But I do find that most patients like the idea of having a voice and being the one to decide, and that way I can help to guide them, but ultimately, it’s up to them.

Katherine:                  

Well, speaking of patients having a voice, are there questions that patients should consider asking when they’re thinking about a proposed treatment plan?

Dr. Davids:                 

Yeah. I think some of the key ones revolve around basic stuff, but sometimes it’s hard to think of it in the moment. But thinking about, what are the risks of this therapy? What are the specific side effects that are most common? When you look at a package insert or you look at a clinical trial consent form, you’re going to see 100 different side effects listed. I always promise patients, “You won’t have every single side effect that’s listed here, but you may have a couple of them.” And again, my role often is to identify which are the more common side effects that we see and how can those be managed?

And then, I think often you’re just asking simply about what are the potential benefits of this therapy? What are the odds that I’m going to get into remission? How long is this remission likely to last?

And then, something that is often challenging for patients to think about – it can be challenging for me as well – is to think about what’s the next step? So, I think a good question to ask is, “If I choose Therapy A, what happens if I need therapy again in a few years? What are the options at that point?” because we’ve been talking so far mostly about what we call frontline therapy, making that initial choice of treatment. But then, once you get into what we call the relapse setting, a lot of the decision of what to receive at that point depends on what you got as the first therapy. And so, trying to think at least one step ahead as to what the next options are I think can be helpful, certainly for the physicians but also for the patients.

Katherine:                  

Do you have any advice to help patients speak up when they’re feeling like their voice isn’t being heard?

Dr. Davids:                 

That’s always a challenging situation, but I encourage patients not to be shy about asking questions.

There’s often an imbalance in terms of the information where the oncologist may know more than the patient about a particular condition. And so, I think reading up and trying to educate yourself as much as you can. Whenever possible, including a family member or friend as part of the visit to also help advocate for you. And then, if you’re not being heard the way that you think you should be, thinking about seeking out another provider who may be able to listen more.

And sometimes that can be again helpful to have a touchpoint with a CLL specialist who may be able to reinforce some of what you’re thinking. If what you’re reading online or seeing online is different from what your oncologist is telling you, that may be a sign that it’s good to get a second opinion and just make sure you’re on the right track.

Katherine:                  

All really helpful advice, Dr. Davids. Before we end the program, what are your thoughts about the future of CLL treatment and research?

Dr. Davids:                 

I’m very optimistic about where things are right now. We’ve gotten to this point where we have so many different effective options, so it’s fun for us to now design this next wave of clinical trials to really try to optimize the outcomes for patients.

One area I’m particularly interested in is a concept called MRD, which we haven’t talked about yet, but minimal residual disease is a way to look even at a molecular level for tiny amounts of CLL that may be left behind after treatments. And so, one of the things I’m particularly excited about is the idea eventually of using what we call MRD-guided therapy.

So, we talked before about continuous treatment. We talked about what we call fixed-duration treatment where everyone gets a year or everyone gets two years. MRD-guided therapy would actually allow us to vary the length of therapy depending on how a particular patient responds. So, some patients may need one year of a particular combination, but other patients may need two years. This could be a way to really individualize therapy for particular patients. It’s also a way to monitor patients who are in remission after they’ve stopped therapy.

And so, there’s another wave of trials looking at, should we be intervening early when patients develop recurrence of their MRD rather than waiting until they’re having progression of the disease? There’s still a lot of unanswered questions about these sorts of approaches, but I think it’s going to help us get even better at treating CLL.

All of this is contingent though upon the fact that patients continue to be interested in clinical trials and enrolling in trials so that we can really push the boundaries and learn even more about the disease. So, again, if no other message comes through, it’s really to think about clinical trials as a way to continue to improve outcomes for all patients with CLL. I think it’s a great situation where both the individual patient who’s participating in the trial can stand to benefit, but then also you can really be giving back and helping others.

Katherine:                  

Dr. Davids, thank you so much for taking the time to join us today.

Dr. Davids:                 

It’s my pleasure. Thanks so much.

And thank you to all of our partners. If you would like to watch this webinar again, there will be a replay available soon. You’ll receive an email when it’s ready. You’ll receive an email when it’s ready. Don’t forget to take the survey immed – don’t forget to take the survey immediately following this webinar. It will help us as we plan programs for the future. To learn more about CLL and to access tools to help you become a proactive patient, visit powerfulpatients.org. I’m Katherine Banwell. Thanks for joining us.

Patient Profile: Sandy Peterson

When she was diagnosed, Sandy Peterson had never heard of chronic lymphocytic leukemia (CLL), a type of blood and bone marrow cancer, so she got to work learning about it. “I really appreciate the organizations who do research, provide support, and make it easy to access,” says Sandy an avid user of the Patient Empowerment Network (PEN) website, powerfulpatients.org. She says she likes to be able to access the resources whenever she wants or needs to revisit something she learned or read. Sandy follows several other organizations specific to her disease, and says each organization offers something a little different that she can benefit from. “PEN stands out with the activity guides,” she says noting that she especially likes how the PEN-Powered Activity Guides are formatted: like a book, where she can flip the pages and not have to scroll through them. “It’s fun,” she says.

Sandy says she learns a lot from the pages about understanding cancer, but she says she also likes the inclusion of articles that focus on lifestyle. “What I have enjoyed most are the recipes,” she says. She appreciates that they aren’t wild and fancy and that they include ingredients that she usually has on hand or can easily pick up at her local grocery store. Sandy also likes the fitness and the coloring pages and says they provide a pleasant distraction. “I look forward to that activity guide,” she says.

Sandy also values the webinars PEN provides. “The webinars are just wonderful. You can look at them again and do it at your leisure. It’s wonderful, and I’ve learned so much,” says Sandy who says she has gotten familiar with a lot of the presenters in the webinars and she looks forward to them because she appreciates their method of explaining things. Sandy has found that the key to putting her mind at ease and escaping fear about her disease is to understand it, which she says isn’t always easy, especially in the beginning. “Everyone knows what they’re talking about, and you don’t have a clue,” she says. “It’s the alphabet soup of a cancer diagnosis. It’s intellectual overload.”

On top of the intellectual overload that comes with being diagnosed with cancer, Sandy was also recovering from major surgery. It was in February 2011 and Sandy was just shy of turning 70 when she had to have emergency brain surgery. It still makes her emotional to talk about it, and Sandy says she doesn’t remember anything about that weekend, but she does know when she came out of surgery and they told her she was going to be fine, they also told her she had cancer. “I was worried about recovering from the brain surgery and was told it could be years before CLL became a problem for me,” she says. She was assigned to an oncologist, got an overview of her disease, and didn’t think much more about it. She had no symptoms, so she says the word cancer didn’t seem scary. However, she does say she was frustrated that her oncologist kept changing. She started with a hematology oncologist, but after a couple staffing changes, she ended up with a breast cancer specialist. “I didn’t complain because you kind of take who they give you,” says Sandy, but she said it just didn’t feel quite right.

By this time, Sandy had fully recovered from her brain surgery, and she started to do some research about her CLL. She started by looking online for reputable websites. Her tip is to avoid .com websites. The .com stands for commercial, and Sandy says she didn’t want to get her information from anyone who was selling something. “You have to do a little bit of searching to find the resources, but there’s a lot out there to support people who have cancer,” she says.

It was through her involvement with online support communities that Sandy learned she needed to make some changes in her cancer care. She says she kept seeing CLL experts and other patients refer to having treatment teams. “I realized I needed a team,” she says. She had her primary care doctor, and the breast cancer specialist, but she wanted a CLL specialist on her team. She had to go out of state to find one, but she did. After ten years with CLL, Sandy continues to have no symptoms and remains in the watchful waiting phase. Her most recent blood test was in mid-October 2020, and her numbers were essentially the same as they were a year ago. “It’s not going away, but it’s not progressing,” she says. “I am very, very fortunate.”

While Sandy is asymptomatic now, she’s concerned about the eventual progression of CLL. She says she’s not to the point of worry yet, but she wants to be prepared. “If it begins to progress and give me trouble at any time, I want to plan for a less healthy me.” She thinks about the logistics and expense of managing house and lawn care and wants to simplify her life so that if the disease progresses, she has a plan in place for managing those things. “It doesn’t have to be depressing, and you can do it while you’re still in control of the situation,” she says. “We not only want to simplify things for our own benefit, but for those who are going to help us.”

Sandy says she also thinks about what will happen if she ever needs treatment. “I’ve heard horror stories about the costs of treatment, and I don’t know how people pay for it,” she says. She stays on top of the latest CLL treatments and pays attention to the laws being passed about covering medications, and she says she’s open to doing a clinical trial if she has the opportunity. “The treatment picture for CLL is constantly changing,” she says, adding that new treatments are emerging, and more clinical trials are opening up all the time. “It’s really exciting.”

In the meantime, Sandy continues to find enjoyment by accessing yoga or tai chi classes online, staying up to date about her disease, and finding support from her trusted online communities like PEN. “It’s a lot to learn, and it’s changing all the time. The understanding is growing, the treatments are improving, there’s always something new,” she says.


Read more patient stories here.

Patient Profile: Liz Sarris

Patient Profile

Liz Sarris

Liz Sarris knows the world of healthcare pretty well. Not only has she had a 40-year career as a nurse, but she’s also had a host of chronic illnesses, which means lots and lots of doctor appointments. As if that weren’t enough, Liz has also been diagnosed with cancer three times – with three different and unrelated cancers! “I’m being watched closely from many angles,” she says. “But the great news is I live to tell the story.”

Her cancer story began in 1988. Her primary care doctor found some unexplained blood in her urine and, unable to dismiss it, referred Liz to a urologist. A scope of her bladder revealed a tumor that was about the size of a pea. Fortunately, it was non-invasive, had not invaded the bladder lining, and was removed. No treatment was required, but she did have to be monitored regularly. For the first two years she was checked every three months, then every six months for the next several years. After that she graduated to annual checkups that continue to this day.

Fast forward to 2014 when she was diagnosed with chronic lymphocytic leukemia (CLL). This time, Liz was seeing an endocrinologist for a thyroid issue when the doctor noticed some abnormalities in her blood work. Further testing led to her CLL diagnosis, which, so far, hasn’t required any medications or treatments other than quarterly check ins. “It is a watchful waiting situation,” she explains.

Then in 2017 things took a turn. Liz’s gastroenterologist, who she sees regularly for two chronic gastrointestinal issues, said that there was a spot on her scans that needed to be checked out. It was a spot they had been watching, but now it was starting to change. The spot turned out to be a neuroendocrine tumor of her pancreas. It was a slow growing tumor and not aggressive, but it was malignant and had to be removed, and there was a chance that it was a lot worse than the doctor thought it was. It meant major surgery that was not at all routine, and because her tumor was in the middle of her pancreas, it was possible that she might lose part of her pancreas and her spleen. Liz wanted the best possible outcome from the surgery, which meant keeping as much of her pancreas as possible, so she started to search for a surgeon. “I wanted to see the right people who were specific to this type of cancer and who do neuroendocrine tumors every day,” she says. “If he’s going to poke around my pancreas, I want to know he’s doing 10, 12, 15 of these surgeries a month.”

First, Liz narrowed her search geographically. She lives in an area that is relatively close to several high-quality medical facilities, and she knew that she didn’t want to be too far away from her family and support system after such a big surgery. Then she started asking questions and doing research. “Because I had engaged myself with good local physicians, I reached out to them for referrals,” she says. She asked her doctors who they would send their wives to and who they themselves would go to. Then she started calling surgeons and made appointments to interview three of them. When she had it narrowed to the surgeon she felt best about, she visited him a second time. “I don’t know if it’s the nurse in me or just who I am,” says Liz about her research process. She says that the doctor she chose made her feel confident, and his approach was more hopeful because he was willing to perform the surgery using a rare technique that meant he would remove the tumor from the center and then reconnect the two sides of her pancreas. Her doctor was upfront with her about all the possible risks and made sure she knew that his plan could change if the surgery revealed a different situation than they were expecting. “Do whatever you have to do to give me the best chance at a healthy life,” she told him and added that she hired him to do the job he would do for his mother, his sister, or his daughter and that she didn’t want to see him again in five years.

Her eight-hour surgery was a success. The tumor was removed, and her pancreas was put back together in what Liz describes as a “creative way.” After her surgery she didn’t require any treatment other than regular monitoring, and so far, all her scans have been good. She credits her successful outcomes in part to having a supportive family, good insurance, and good doctors, but she didn’t have good doctors by accident. She’s very proactive in her own healthcare. “I had the recipe for a good situation, but that doesn’t mean I didn’t have to do the research,” she says.

Her background as a nurse helped her know what questions to ask, but she wants others to know they can ask the same questions and can be just as informed. “You can navigate your care more than you think you can,” she says. “You really have to utilize your resources.” Liz says resources like the Patient Empowerment Network, where patients have access to free online tools such as a checklist of questions to ask the doctor, are great for cancer patients. “There needs to be more empowering,” she says. “Much of what I’ve done my entire career is try to empower patients.” She says that being empowered means being educated, identifying your expectations, and asking questions. “We are willing to ask questions of our auto mechanics about our car’s maintenance and repair, but not of our doctors about our own bodies,” she says.

These days Liz is adjusting her expectations for her own life. In March, Covid-19 interrupted the career she’s been so passionate about when her oncologist told her it wasn’t safe for her to continue to work during the pandemic. “This is not how I anticipated retiring,” she says. With her unique perspective as experienced patient and medical professional, she has a lot of knowledge to share, so now Liz is exploring how she can continue to help other patients learn more about how to navigate the healthcare system and take charge of their own care plans. She’s empowered to empower others.


Read more patient stories here.

Digital Advocacy and Health Equity for CLL Patients

Telemedicine or telehealth – remote access to healthcare – has become widely used after the arrival of the coronavirus pandemic, especially by cancer patients. But the rise in telemedicine has also brought challenges to the vulnerable populations of Americans over age 65 and to low-income Americans who have struggles getting online. 

Among patients who are over age 65, only 55 percent to 60 percent of them have broadband access from home or own a smartphone. These patients also have challenges with completing information online, with only 60 percent who have the ability to send an email, to complete a form, and to locate a website. Among low-income patients, only 53 percent are digitally literate, and they also have lower rates of Internet use, broadband access, and smartphone ownership compared to other patient groups. 

Empowering Vulnerable Communities

As an avenue toward reducing inequities, the Patient Empowerment Network (PEN) is working to foster change toward achieving equitable healthcare for all. In order to provide practical usage of telemedicine tools, PEN created the TelemEDucation Empowerment Resource Center for chronic lymphocytic leukemia (CLL) patients and their loved ones. Another resource, the digital sherpa™ program, helps cancer patients and their families become more tech-savvy by learning to use technology to their advantage during their cancer journey and beyond.

Here’s a summary view of the knowledge gained about telemedicine to help provide optimal care to CLL patients:

How to Optimize a Telemedicine Visit

Just like in-person care visits, telemedicine visits are scheduled with a time limit in mind. Some things to remember about telemedicine visits:

  • If a video conferencing tool is needed for your visit, install the tool on your laptop, tablet, or smartphone ahead of time so that you aren’t rushed when your appointment time arrives.
  • Just like in-person doctor visits, your doctor or care provider may run a few minutes late.
  • Try your best to remain flexible and to be patient.
  • Try to write down your questions before your appointment to keep on track about things you want to learn during your visit.
  • Remain focused on the main purpose of your visit as much as possible. Polite small talk is fine but keep it to a minimum so that you can get the most out of your visit. 

CLL Patients Who Benefit the Most From Telemedicine

Not every CLL patient will be a good fit for telemedicine visit. Things to keep as top of mind for telemedicine visits:

  • CLL patients who are on active surveillance from their care providers are a natural fit for telemedicine. They can get periodic blood tests from a local laboratory, and the results can be sent electronically for their CLL specialist to evaluate.
  • Patients with high-risk genetic features or rapidly progressing CLL are not the ideal patient for care via telemedicine.

In the time of the coronavirus pandemic, remote monitoring has become part of standard healthcare terms. Some things for CLL patients to know:

  • Though it may be a new healthcare method for many patients, monitoring has actually been used for decades in the care of CLL patients and others with suppressed immune systems.
  • Remote monitoring is used to reduce the risk of infection to those with reduced immune system function, such as those with cancer and CLL.
  • Remote monitoring is a completely safe medical practice for CLL care when a patient’s blood work is monitored on a regular basis. Always ask your doctor if you’re unsure if you’re a candidate for remote monitoring or if you have questions about the frequency of your blood tests.

How Telemedicine Can Improve CLL Care

Now that even more CLL patients have become accustomed to using telemedicine care tools, CLL experts are looking to the future. Looking ahead:

  • Telemedicine can help CLL patients who live in very remote areas to gain access to clinical trials that weren’t accessible to them in the past.
  • CLL therapies will continue to improve for patients as a higher percentage of CLL patients participate in clinical trials.
  • The improvements in remote monitoring will bring more tools for CLL patients to do routine things like sending their heart rate and other things to their care provider in real time. 

Telemedicine Glossary

Here are some helpful telemedicine terms to know:

  • HIPAA – HIPAA, or the Health Information Portability and Accountability Act, is a healthcare compliance law providing data security and privacy for the safeguarding of patient medical information. In telemedicine, provider-patient communication must take place through HIPAA-compliant secure platforms.
  • Patient portal – a secure Internet sign-on that allows patients to contact their provider, review medical tests and records, access health education materials, and seek appointments. Most provider networks develop a patient portal before they move to full video appointments.
  • Remote monitoring – type of ambulatory healthcare where patients use mobile medical devices to perform a routine test and send the test data to a healthcare professional in real-time.
  • VPN – a VPN, or virtual private network, is a secure and private way to connect to the Internet over public wireless connections. VPNs are particularly important for those living the digital nomad lifestyle and connecting in foreign countries where networks may be more vulnerable to communication transmission interference.

Now that telemedicine tools are gaining both in usage and numbers, CLL patients can feel hopeful about improved care and treatment toward the future. As a step in that direction, take advantage of the resources below and continue to visit the TelemEDucation Empowerment Resource Center for informative content about CLL and telemedicine.


Resources for Telemedicine and CLL

Dr. John Pagel’s Top Tips for Preparing for Your CLL Telemedicine Visit

Telemedicine Challenges and Opportunities for CLL Patients

Will Telemedicine Mitigate Financial Toxicity for CLL Patients?

What Subset of CLL Patients Should Utilize Telemedicine?

Will Telemedicine Be Part of Routine Management for CLL?

How Will Telemedicine Impact Time-Limited Therapy in CLL?

What CLL Population Will Benefit Most From Telemedicine?

Remote Monitoring

TelemEDicine ToolBox Visit Checklist

TelemEDicine ToolBox Glossary

 

Will Telemedicine Give More CLL Patients Access to Clinical Trials?

Will Telemedicine Activate More Remote Monitoring for CLL?

Will Telemedicine Improve My Quality of Life with CLL?

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

What CLL Symptoms Can Be Monitored via Telemedicine?

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

digital sherpa™ program

Events

Coming Soon

Please check back soon as we work to build more resources.