Partnering With Your Doctor on CLL Treatment Decisions

Partnering With Your Doctor on CLL Treatment Decisions from Patient Empowerment Network on Vimeo.

Which CLL treatment could be right for you? Dr. Steven Coutre, a CLL specialist, reviews current approaches and explains why patients should stay informed about emerging options.

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, any decision about treatment is, of course, a joint decision between the physician and the patient. It’s our job to really educate each individual patient about their options and also, I think, very importantly, determine what their goals are. You don’t really follow a strict algorithm. It’s really making a decision for each individual patient.

So, of course that takes into account other medical conditions they may have, the nature of their disease, why it is that we’re treating that individual, what we’re trying to accomplish, and very importantly, what the goals of therapy are for that individual. That may be very different, for example, for somebody who’s quite young versus somebody who’s older or who might have significant medical comorbidities.

I think patients are always well served by asking questions about the treatment, side effects of treatment, of course, these days, cost comes into play, so I think we have an obligation to let patients know the differences between the therapies because often we have choices about a therapy. There isn’t any one best therapy, for example. It’s often a number of choices, and sometimes that can be very, in some ways, confusing for patients, because they wanna know, “Well, what’s the best therapy?” and as I mentioned, it’s not so much what’s the best. It’s what’s the best for that patient, and many times that’s choices of treatment.

Some are time limited, for example. Some are continuous therapies. So, there’s plusses and minuses, and again, it all goes back to what’s your goal for that individual patient, what are their preferences in terms of the treatment that they want to receive.

The drugs that I mentioned earlier are Bruton Acalabrutinib, Venetoclax, for example. These are really the first of our new really transformative drugs for CLL. Drugs, along sometimes, with our antibodies, Rituximab and Obinutuzumab, which are really replacing the use of chemotherapy in treating the disease. So, moving forward, we’re looking at combinations of these drugs. Can we drive responses deeper? That would lend itself to stopping therapy, in some case, instead of using continuous daily therapy as we currently do with drugs like Ibrutinib or Acalabrutinib.

So, that’s the major focus right now. There, of course, will be other new drugs. There’s a third drug, Zanubrutinib, which is another BTK inhibitor, so that’ll probably play a role in treating CLL. There may be differences in side effect profiles between these drugs. There isn’t any new drug that we’re looking at currently that’s far enough along to say that it’s gonna be yet another fundamentally different, revolutionary therapy for CLL. But those, of course, can come along as we learn more about the biology of the disease.

You may have heard about CAR T-Cell Therapy, where you’re using your body’s own immune system to try to target the cancer. This has been very successful and is actually approved for use in other diseases, like large cell lymphoma, for example, but it remains very much investigational in CLL. There are also other clever ways of trying to achieve the same, endpoint, that is, using your own immune system to target the cells, that are simpler than CAR T-Cell Therapy and those kinds of approaches are also in clinical trials.

So, when you’re having the discussion about treatment, it’s always good to learn about what the latest therapies may be, even if they are investigational. I think that’s how we move the field forward and, of course, the newer drugs that we have brought forward came from clinical trials that patients greatly benefitted from. So, always ask your physician about clinical trials. Another great source for that, I think, is the Leukemia Lymphoma Society. They’re very patient-focused, they’re very up to date on the latest therapies and the latest trial results. They have a very robust presence, both online, and also, generally locally. There’s local chapters. So, I would encourage you to reach out to them for information.

CLL & COVID 19: What Do Patients Need to Know?

CLL & COVID 19: What Do Patients Need to Know? from Patient Empowerment Network on Vimeo

What do people with chronic lymphocytic leukemia (CLL) need to know about COVID-19 (coronavirus)? CLL expert Dr. Steven Coutre provides guidance for patients during the current global pandemic.
 
Dr. Steven Coutre is a Professor of Medicine in the Hematology Department at Stanford University Medical Center. Learn more about this expert.

See More From The Pro-Active CLL Patient Toolkit


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How Can CLL Patients Take Advantage of Telemedicine

 

PEN-Powered Activity Guide: Utilizing Telemedicine Tools & Staying Connected

 

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Transcript:

Dr. Steven Coutre:

Well, of course, we are in the COVID era. We don’t know how long this is going to last. And so, a very common questions that comes up from our patients with CLL is what impact does this have on them and are they more susceptible, you know, the natural things that people wanna know. With CLL in general, there probably is some compromise to the immune system, but it’s really hard to measure or quantify. Certainly, individuals who’ve had a lot of chemotherapy in the past, who have advanced disease are more susceptible to infections. In contrast, someone who’s without symptoms, has a low burden of disease probably is close to being like somebody who doesn’t have CLL. So, there’s certainly a spectrum.

Really, we just try to advise following the guidelines that we are all following in terms of social distancing at present, at being aware of being around others too closely, or those who may have symptoms. So, I think, in a way, what everyone is doing now is something that is beneficial to patients with CLL, and certainly other cancers, with respect to infection risk.

Now, what about do we have any information? Is somebody with CLL more susceptible to getting COVID? What if you do get the infection? Is it going to be more severe because you have underlying CLL? And, at least in general terms, the answer seems to be no. That’s really just based on experience, anecdotal experience, certainly in areas like New York City or Italy, for example, where infectious rates have been quite high. Colleagues have commented that their patients don’t seem to be more ill simply because they have the underlying disease or because they’re on a certain treatment, for example.

There’s actually some very interesting data suggesting that perhaps the BTK inhibitors, Ibrutinib, Acalabrutinib, et cetera, might actually confer benefit, might lessen some of the consequences of the infection, and as a result, large clinical trials have started for patients without CLL. Just anyone who has a significant COVID infection who’s hospitalized, they’re testing that hypothesis. So, it’ll be very interesting to see what we learn from this. Perhaps what we’ll learn is that being on a drug like that might actually be beneficial.

It’s certainly natural to be hesitant to come into a healthcare facility because of the risk of infection, and certainly that’s gonna vary quite a bit depending on where you are. At the height of the pandemic in New York City, of course, a lot of concern on the part of patients going into a hospital clinic, for example. Whereas, at our institution, the impact has been quite low. All institutions, of course, have taken any precautions they can to limit exposure, so, I’ve often told my patients that it’s probably safer to come into our clinic and get your blood drawn or see someone if you need to than going to the grocery store, for example, in terms of exposure.

But that’s very different than saying the same thing in the middle of New York City. So, I think you have to deal with each situation as it arises, and one would hope that your physician can give you guidance. And I think, in particular, what we can do is really decide how important it is to see somebody in person or have them come in and get a lab test there. I think in many, many, many cases, that can be avoided for the time being.

And that also is an important point, that we can provide reassurance that you know, you’re used to coming in every four months or every six months and having things checked, and in many cases we can reassure that individual that it’s okay to wait. It’s not critical to get that information right now.

So, remember that what we often emphasize in evaluating someone and making decisions when to treat is three things. It’s how you feel, what your exam is like, and what your blood counts look like. So, of course, you know how you feel. If something changed, you’re having night sweats, or a lot more fatigue, is it significantly different? Of course, you typically know if anything’s changing with your exam. Are your lymph nodes getting enlarged?

Do you notice discomfort in your abdomen because of an enlarging spleen?

And so, two of the three things you can sort of self-assess, in a way, and then based on what your blood counts have been showing over time, your physician can factor that in and decide how important it is to get that test now. And as I mentioned, in many, many cases, it’s perfectly fine to delay that. So, it’s not as difficult as it might seem to you to be able to come up with a reasonable assessment about how somebody might be doing, even in the absence of seeing them and doing an exam in person.

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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See More From The Pro-Active CLL Patient Toolkit


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CLL & COVID 19: What Do Patients Need to Know?

 

PEN-Powered Activity Guide: Utilizing Telemedicine Tools & Staying Connected

 

How to Learn More About Your CLL


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.