Tag Archive for: CLL Toolkit

How Can CLL Patients Take Advantage of Telemedicine?

How Can CLL Patients Take Advantage of Telemedicine? from Patient Empowerment Network on Vimeo.

In light of the global pandemic, many providers expanded their telemedicine options so that patients can connect with their physicians virtually and avoid in-person visits. Expert Dr. Steven Coutre explains how this approach could benefit people with chronic lymphocytic leukemia (CLL).

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

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Transcript:

Dr. Steven Coutre:

Well, we are in a new era, at least temporarily, and, for example, we’ve switched almost exclusively to video visits. This had largely been used for patients who lived in remote areas. They didn’t have good access or ready access to healthcare providers, and so, the government reimbursed for those kinds of visits, but not for somebody who lived close by, for example.

Well, that all changed dramatically with the COVID infections, even for our patients on clinical trials. And we’ve done the grand experiment that never would have been done otherwise, of just suddenly doing all video visits, and I must say, it’s worked out quite well so far. I think patients are quite satisfied with it, by and large. It allows them to have their questions answered and continue to have appropriate monitoring if they’re on therapy, or even if they aren’t. And so, I think, when things improve, this will continue, to some extent. So, right now, I would expect that any CLL patient would have ready access to their hematologist or oncologist via video visit.

And also, I think this whole situation has promoted a lot more video conferencing, educational video conferencing. Not having to physically attend a conference in order to get information. So, I think they’ll see a lot more educational resources out there online for them.

Well, of course, with CLL, we’re also very interested in blood counts, as are our patients, and if we’re doing remote visits, or even if they live fairly close but aren’t coming in, we do try to get the lab work done, but that’s worked out quite well. We’re used to dealing with patients coming from far distances, and so, in the past, if we wanted to get a lab result in between visits, we would simply make those arrangements with their local lab. Everybody tends to have an internist, a family doctor that they see, and so they’re familiar with getting lab tests done near where they live, and in all cases, we’ve been able to accommodate that.

And now with the increasing of electronic medical record usage and interlinking of medical record systems, we can, for example, get lab tests done at a local lab and have those. Actually, those results are directly imported into the medical record. So, they’re easily accessible to us. So, I must say, it’s been a pleasant surprise to see how well this has worked.

Diagnosed with CLL? An Expert Outlines Key Steps

Diagnosed with CLL? An Expert Outlines Key Steps from Patient Empowerment Network on Vimeo.

You’ve been diagnosed with chronic lymphocytic leukemia (CLL), now what? Dr. Matthew Davids explains key steps to take following a diagnosis. Need help speaking up? Download the Office Visit Planner and bring it to your next appointment here.

Dr. Matthew Davids is the Associate Director of the CLL Center at Dana-Farber Cancer Institute. More about this expert.

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Transcript:

Dr. Matthew Davids

So, if I were diagnosed with CLL today, we’ve discussed some of the resources that are available in terms of educating one’s self about the disease: CLL Society website, other videos on VJHemOnc, things like this. There are other websites that give more basic information about the disease, for example, Lymphoma Research Foundation, American Cancer Society, American Society of Clinical Oncology.

So, personally, I would want to know a lot about the disease. And I would probably first turn to these particular resources, which I think can be very helpful.

I would certainly partner with a local oncologist hematologist who can help guide the management. But one thing that you should remember is that most general practitioners for oncology may only see a few CLL patients a year, and the field has changed quite a bit over the last few years. And it can be hard to stay completely up to date on all of these developments.

So, one thing that I would think would be very helpful for anyone diagnosed with CLL is that, if you do have access to a major center that has someone who specializes in CLL or at least in lymphomas, that can be a great resource. And so, I do recommend, if patients can do it, to try to seek out a second opinion from a CLL specialist. And this can be very helpful even if the recommendation is still just observation, that they can help educate about the disease, identify other resources for educational purposes, and just become a part of your team, to have them available down the line.

And I see many patients like this who come for a second opinion at diagnosis. And I kind of tell them, “Go back to your local doctor. Stay on observation. It’s likely you’ll do well for many years on this watch and wait strategy. But at the time when they’re recommending that you need treatment, come back and see me then. It’s easier to get in once I know you.”

And at that point, I can help reassess, 1.) Do I agree that treatment is really needed at that point? Sometimes, it’s actually possible to wait even a bit longer; and then, 2.) What would I recommend for the best treatment option at that time? Could be a clinical trial that might only be available at that center. And I think unless you have a CLL specialist on your team, it’s gonna be hard to know about those available resources.

So, it’s not that you necessarily need to follow exclusively with a CLL specialist. But it’s more to just have them involved, have them know about you. And that way, if you need them down the line, they’ll be available to help support you.

I think in terms of education and self-advocacy, this is a very personal issue. And so, for many of my patients, it’s very important that they are educated about the disease and kind of know the ins and outs of the different clinical trials and so forth.

But it’s also important to remember that that’s not gonna be true for every patient. A lot of my CLL patients are also older patients, and they may not want to know all the details of what’s going on. I think it is important to have someone who’s involved with your care know about these details. Ideally, if it’s not you, it might be a spouse or a partner or a child, for example. A lot of my older patients don’t wanna know all the details about the molecular biology and the clinical trials. But often, it’s their son or daughter who is there with them who wants to know this.

And so, I think it’s helpful often to bring a family member with you to the visits. Because as you can see even from today, there’s a lot of information to learn, and it can be hard to remember everything.

So, having someone else, another set of ears and eyes, someone else can maybe take some notes at the visit and review them with you later, I think can be very, very helpful in terms of your own self-awareness about the disease.

So, in general, I love when patients ask me questions. Sometimes, they are very savvy questions. They are familiar with the literature, and they can kind of really push me to explain my opinions and beliefs about certain treatments. And sometimes, they’re just very basic questions that may be seem silly to the patient but are really not silly questions.

Really, this is a brand-new area for most patients. They have no experience with this when they first start out. So, they should never feel like they’re bothering their oncologist with these questions. I think it’s really important for them to understand the basics of what’s going on. That should really be a minimum for every patient.

And then for patients who wanna know more about some of the details from the research and the clinical trials, I think their doctor should also be able to help explain that to them as well. So, they should never feel like they’re bothering their oncologist with their questions.

Could a Clinical Trial Be Your Best Treatment Option?

 

Could a Clinical Trial Be Your Best Treatment Option? from Patient Empowerment Network on Vimeo.

Is participating in a clinical trial a last resort or could it be your best treatment option? Dr. Matthew Davids explains the clinical trial process and what’s involved in patient participation.

Dr. Matthew Davids is the Associate Director of the CLL Center at Dana-Farber Cancer Institute. More about this expert.

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Transcript:

Dr. Matthew Davids

My patients often ask me about clinical trials and whether I think that would be a good fit for them. I think there is, in some cases, a bit of a misconception that clinical trials are a last resort for our patients. And we do have some clinical trials that are exploring brand new mechanisms of a drug that have never been used before.

And in that scenario, I would only recommend a trial like that for a patient who has already exhausted all of the standard options.

But I think that, in my opinion, clinical trials should really be the first best choice for most patients. Because we have many trials in CLL that are using the drugs that are already approved, so we know that they’re gonna be effective. And now, we’re putting them together for the first time in new combinations and in new creative ways that will help to advance the field. And most of the trials we have in CLL are not randomized, placebo-controlled. So, patients know what they’re getting. They’re gonna be getting an effective therapy.

And this is a way that they can really get access to cutting-edge care. I would say when you’re a part of a clinical trial, you have a lot of other eyes watching you. In addition to your oncologist and the infusion nurses, for example, you also have research coordinators, research study nurses. Some centers have additional scheduling staff that helps with the clinical trials. So, it’s really a way to get excellent quality clinical care, often getting access to cutting edge treatments.

And so, here at Dana Farber, for example, we try to have a clinical trial option available for patients at every stage of the disease, so that we have trial options for patients who have never had treatment for their CLL, trial options for patients who have maybe only had one or two prior treatments, and then some of those other more experimental clinical trials for patients maybe who have exhausted some of the other options that are available by the FDA-approved therapies.

So, I’m really a huge advocate for clinical trials. I think that’s how we’ll continue to improve the treatment options for our patients with CLL.

Nervous About a Second Opinion? How to Confront Your Fears

Nervous About A Second Opinion? How to Confront Your Fears. from Patient Empowerment Network on Vimeo

Chronic lymphocytic leukemia (CLL) patients may be hesitant to ask for a second opinion to help guide their care and treatment choices. Dr. Brian Koffman shares his advice for confronting fears and becoming a confident self-advocate. Need help speaking up? Download the Find Your Voice Resource Guide here.

Dr. Brian Koffman is the cofounder, chief medical officer, and executive vice president of The CLL Society.

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Transcript:

Dr. Koffman:   

It’s a relatively rare cancer, and most hematologists and oncologists are busy taking care of the more common cancers, like breast, colon, prostate, or lung cancer.

So, they don’t really have a lot of experience compared to a CLL expert who only sees CLL patients, or more than half their practice is CLL patients, in terms of taking care of those patients. There are roughly 20,000 hematologist/oncologists in the USA, and there are roughly 20,000 new patients diagnosed with CLL a year, so if you do the math, you can figure out a community hematologist might be seeing one new CLL patient every year.

So, you wouldn’t see a surgeon who does one hernia repair a year, you’d see one who does many every week. So – and, it’s not just that these people have more experience. There’s research that shows that there’s a survival benefit to seeing a CLL expert, and people live roughly two years longer – based on some old research – by just having an expert as part of their team.

Above and beyond that, CLL is being revolutionized in how it’s being treated, and there’s all kinds of new therapy, and what the best treatment today will be upstaged by a better treatment next month, perhaps. So, unless you’re really focused on CLL, you’re not gonna be aware of what the latest data, what the latest research is, so it’s critically important because they’re on top of what the latest research is, they’re on top of what the latest clinical trials are, they’re on top of the best way to use the new medications that are available, and they provide you with significant survival advantage and management of some of the potential complications with CLL.

So, some people are concerned about getting a second opinion because they’re worried that it might portray to their doctor that they don’t have trust in their judgement or that they’re not happy with the care that they’re getting. Well, as a retired physician, let me assure you that most doctors are very thick-skinned, and we generally welcome people getting another opinion – a second opinion – and medicine is collaborative, and so, most doctors aren’t hesitant about you doing that, and welcome that. Bluntly, if you have a doctor who doesn’t want you to get a second opinion, that would be, for me, a real urgency to get a second opinion.

If hesitant or nervous about getting a second opinion, what I would encourage you to do is think hard about what – whose skin is in this game. Who is the person who has the disease? Who is the person that’s gonna benefit from getting that extra information? So, what is the worst that could happen? The worst that could happen is that you could see the expert, get an opinion that’s identical to your own physician’s, and that just inspires confidence in what’s going on.

The other thing that could happen is there might be an alternative that’s more attractive – less toxic, more effective – and wouldn’t you kick yourself if you hadn’t taken that chance and pursued getting that extra information? So, it’s – every medical decision should be a shared medical decision, and it’s all right as patients to ask for that second opinion and just…not to be hesitant about doing it.

Really, again, it’s rare that a doctor is gonna object to you doing that, and if your doctor objects, then I think you’ve gotta look at what that means, and especially in view of the data, there’s a survival advantage to getting a second opinion.

Overwhelmed By a CLL Diagnosis? Key Steps to Take

Overwhelmed By a CLL Diagnosis? Key Steps to Take from Patient Empowerment Network on Vimeo

CLL advocate Dr. Brian Koffman, outlines key steps to take following a chronic lymphocytic leukemia (CLL) diagnosis.

Dr. Brian Koffman is the cofounder, chief medical officer, and executive vice president of The CLL Society.

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Transcript:

Dr. Koffman:             

When somebody’s starting their CLL journey, there is some advice that I’d like to give people. The first is take your time. CLL rarely needs to be treated as soon as it’s diagnosed. You have time to learn about the disease, to familiarize yourself with the disease, and that learning is an iterative process.

You go over and over stuff, and eventually, this incredibly foreign language full of acronyms and medical talk becomes more familiar to you, and you feel more comfortable with it. But, it’s very overwhelming at first, but it’s not like some acute leukemias and other kinds of cancer, where they’re gonna see you on Tuesday and book the start of therapy on Friday. In CLL, that almost never happens. So, the first thing I would say is take a deep breath, under-react, and accept that you’ve got some time to make that decision.

The second strong piece of advice I would give people is to get an expert on your team. I can’t emphasize that enough. CLL is a rare cancer that the treatment paradigms have shifted radically in the last couple years, and they’re continuing to shift. And, if you’re not taking advantage of those changes – and, the research shows that in the community, patients are still too often getting inappropriate or less-than-optimum care compared to what’s happening in academic research centers.

You wanna get into their Rolodex file. You wanna be in their system so if a crisis happens three years down the line, you’re not a new patient trying to get an appointment. You have them in your system.

A third point that I’d make is to insist that you get appropriate testing before each and every treatment of your CLL. “Test before treat” is one of our mantras at the CLL Society because CLL tends to evolve over time, and not some – most, but not all of the prognostic and predictive factors can change over time, and those factors can be very influential in terms of saying, “This therapy will work, that therapy won’t work.” It’s critical that you know that, and if you knew it a year ago, it may be different now, so it’s critical to insist that your doctor do the appropriate predictive and prognostic testing.

We outline that on our website in our “test before treat” section in terms of what tests you need to have done. Take your time, get an expert, and get tested before treatment.

So, one of the questions I get asked is how can people learn more about CLL?

So, you can – some people like to learn online. CLLSociety.org has highly curated, medically reviewed articles that can help people from the beginning move forward. Leukemia and Lymphoma Society has useful resources on their website and has pamphlets that can help. Lymphoma Research Foundation is another. The Patient Empowerment Network offers you resources, listening to CLL experts and other CLL patients.

Going to support groups – you can often learn from other patients’ experiences. There’s nothing like meeting another patient and finding out what they’re like in that journey, especially if you’re two months into the journey and they’re 15-20 years into the journey. That can be incredibly helpful for you to see what their personal experience was in doing that. So, and also, there’s educational forums – for example, at the CLL Society, we have a dozen educational forums across the country every year – that give people an opportunity to learn from experts at places like the National Institutes of Health, Dana-Farber, MD Anderson, UCSD, and the Mayo Clinic.

So, we usually have one that isn’t far away from people to be able to go to if you wanna do your learning live.

Expert Advice for Newly Diagnosed CLL Patients

 

Expert Advice for Newly Diagnosed CLL Patients from Patient Empowerment Network on Vimeo.

Dr. Danielle Brander provides her expert advice for newly diagnosed chronic lymphocytic leukemia (CLL) patients and outlines key steps for staying informed and engaged in care decisions. Need help speaking up? Download the Office Visit Planner and bring it to your next appointment here.

Dr. Danielle Brander is Director of the CLL and Lymphoma Clinical Research Program at Duke Cancer Institute. Learn more about Dr. Brander here.

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Transcript:

Dr. Brander:

For patients newly diagnosed with CLL, I think there are a couple important first steps to take. First is recognizing that this is a long journey, meaning from the time of diagnosis potentially being monitored until requiring therapy, or maybe being a patient that doesn’t ever need treatment, or has to switch amongst different treatment options either due to response or due to a problem tolerating the therapy, is just recognizing that in this long journey it’s also going to be a long time for self-education of yourself, your family, and your caregivers.

And recognizing that at the time of your first appointment with your oncologist, that it’s okay to feel overwhelmed with the information, and just recognize to take the education that you can in pieces, and it’s okay to ask the same questions each time because your understanding is going to evolve with time. There’s only so much information any of us can understand when we’re first hit especially with news and told of leukemia, or even just in trying to understand why patients don’t necessarily need treatment.

It’s somewhat intuitive to all of us to feel like if you find something wrong, especially a leukemia, to want to treat it right away. But I tell patients an important first step is understanding that it is doing something by not doing something if you don’t need to. There’s been a lot of studies over the years showing no benefit to early treatment, and also some side effects, and also that some patients might never require therapy.

So that’s an important first step is understanding that move and that it’s okay to ask the same questions each time. Remind me what we’re looking for if I need therapy, etc.

Also, again, in today’s world, there are a lot of online resources. But one important recognition I would say, is finding the right one. Your treatment team can help guide that. There are also CLL communities that can help guide it to resources that are kept up to date. For example, as I mentioned, there are a lot of new drugs for treatment of CLL, so if you stumble upon research even from three, four, five years ago, that might not adequately reflect out patients do today and all the options that patients have today.

At the time of the first visit, it’s always good to go with a couple of questions in terms of the CLL, particularly if you’re meeting the oncologist for the first time if the testing to diagnose was done by someone other than your oncologist.

You might have had time to think about the questions, but if you’re going and hearing about the diagnosis for the first time, ask for a short follow-up to come back with questions. Because as you go home and process and talk with your family, other questions may come up.

The other important thing I tell patients as a first step is when you’re making the list of questions, try to do it ahead of time, and try to bring someone to be your ears for the appointment, and to take notes, because it’s very easy in the moment to forget everything that’s being said or what questions you might want to ask.

But also prioritize your questions, because what might seem like a short, easy, first question might be a longer discussion, might lead to other questions, and you wanna make sure you prioritize since time is limited, and understanding too much information at once is limited, that you know when you go in what your most important first questions would be.

And then lastly I would say if you’re talking with your team, it’s okay to ask if you want more information or even to understand about research opportunities. If there’s an either blood cancer expert or CLL or lymphoma expert clinic nearby where you might be able to go and get additional information, particularly if you’re thinking about treatment or trial options for you, that doesn’t mean that when you’re seeking out some of those centers that it’s changing who your core care team would be. Those visits can just sometimes be an extra step to help you understand either around the time of diagnosis or just hear in a different way in terms of treatment and trial options.