CLL Programs

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Which Oncologists Are Chronic Lymphocytic Leukemia Experts?

Which Oncologists Are Chronic Lymphocytic Leukemia Experts? from Patient Empowerment Network on Vimeo.

How are oncologists designated as chronic lymphocytic leukemia (CLL) experts? Expert Dr. Ryan Jacobs explains the benefits of seeing a CLL specialist and questions to ask about their experience for your optimal care.

Dr. Ryan Jacobs is a hematologist/oncologist specializing in chronic lymphocytic leukemia from Levine Cancer Institute. Learn more about Dr. Jacobs.

See More from START HERE CLL

Related Programs:

Why Is Early Stage Chronic Lymphocytic Leukemia Treatment Delayed?

Why Is Early Stage Chronic Lymphocytic Leukemia Treatment Delayed?

Does Untreated Asymptomatic CLL Carry Risks?

Can Bone Marrow Return to Normal After CLL Treatment?

Can Bone Marrow Return to Normal After CLL Treatment?


Transcript:

Lisa Hatfield:

So I really appreciate this question from a patient because I’m a big advocate for patients seeking out a specialist for whatever type of cancer they have, at least for the initial consult. So this patient is asking, what are the criteria used to designate certain oncologists or hematologists as CLL experts, and how much weight is given to the number of published research papers that are co-authored?

Dr. Jacobs:

So I think this question is stemming from the acknowledgment that if you can see an expert and you have that resource, it makes sense. And I always bring up to patients, if you’re going to get a hernia repair, there’s plenty of data that shows if you go to a doctor that just does hernia…go to a surgeon that just does hernia repairs versus a general surgeon that only a proportion of his practice is hernia repairs, that the negative outcomes and failures of the surgery are lower with a specialized surgeon, which makes sense. I think it’s an easy way to connect that. And there’s actually data that shows the same in CLL if you go to a doctor that focuses in CLL. And then there are, of course, different levels. But they’re going to be more likely more up to date with the recommendations, have used more of the drugs, know how to navigate the toxicities with more experience.

So it’s all about truly what labels an expert is experience. And there’s not an official club, or a test or a, you know, a voting in. It’s just essentially oncologists that are able to, with the volume of their practice, focus in CLL or hematologic or lymphoid malignancies. So it’s quite rare to be able to find somebody that only sees CLL. I don’t even only see CLL. I do see other lymphomas. And I have five other lymphoma doctors in my practice here, but even with that many lymphoma patients, I still can’t completely fill up my clinic with just CLL.

So it’s really about how focused the practice is. Patients should feel empowered to ask oncologists what kind of cancers they treat. And, of course, there are many oncologists that have to treat everything and we need those oncologists. But it should just be understood that that oncologist couldn’t justifiably call himself a CLL expert by their practice. I think, and it’s reasonable, if you ask your oncologist what they treat and they only treat blood cancers, I think it’s safer to believe them if they identify as…I don’t think anybody’s going to try to misrepresent themselves.

But if somebody tells you that they focus in lymphoid or hematologic malignancies, and focus and are an expert in CLL, I think it’s okay to trust that. But if they’re seeing…by and large, if these doctors are having to see a wide breadth of solid tumor cancers as well, I think it’s kind of difficult to say you’re an expert in one small malignancy out of all those. But, of course, there can always be exceptions.

The question on publications, you know, that’s a different…you could go to a doctor that all they do is publish and don’t see patients very much, and you may not get the best care for your CLL. So yes, I think publications can show that they’re involved in research. But at the end of the day, in terms of treating the patient, you want an oncologist that treats a lot of CLL.


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Why Is Early Stage Chronic Lymphocytic Leukemia Treatment Delayed?

Why Is Early Stage Chronic Lymphocytic Leukemia Treatment Delayed? from Patient Empowerment Network on Vimeo.

What’s the reasoning behind delaying chronic lymphocytic leukemia (CLL) treatment in early stages?  Expert Dr. Ryan Jacobs explains results of the CLL12 study and why active surveillance is an approved approach in early stage CLL.

Dr. Ryan Jacobs is a hematologist/oncologist specializing in chronic lymphocytic leukemia from Levine Cancer Institute. Learn more about Dr. Jacobs.

See More from START HERE CLL

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Which Oncologists Are Chronic Lymphocytic Leukemia Experts?

Which Oncologists Are Chronic Lymphocytic Leukemia Experts?

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Transcript:

Lisa Hatfield:

Why are CLL patients not getting treatment in early stages of disease?

Dr. Jacobs:

So interestingly enough, in the recently reported final analysis of the CLL12 study, which was trying to look at this particular question, do we, with our newer agents, gain anything from starting treatment earlier? Because, I’ll just remind the audience that there’s never been a study that shows giving an asymptomatic patient chemotherapy, ultimately improves survival. So we don’t do it. And with the important also caveat that I…there is a percentage of CLL patients that will never progress clinically. And I have patients in my clinic that have been on active surveillance for more than two decades.

So, with all that in mind, with our newer treatments, and, of course, ibrutinib (Imbruvica) was the first newer of these targeted agents, these small molecule inhibitors, there was this question, well, now that we have these newer treatments, can we start treatment early and does it make a difference? And so they took high-risk CLL patients and randomly assigned them in a blinded way to placebo or ibrutinib and followed them for years. And they just recently shut down the study because after many years there is still no difference in survival. And, of course, there are side effects with treatment and there’s financial toxicity for treatment too.

So with no survival benefit, we are, in any study in asymptomatic patients, we are not treating asymptomatic patients. And I have patients that experience hearing that in different ways. I would say three-quarters are really happy and love the fact that they can see me in six months to check in. But then there is the percentage that are kind of angry and think that we’re missing the boat here by just watching, so to speak. But the data supports active surveillance.


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Can CLL Remission Occur With Rheumatoid Arthritis Drug Treatments?

Can CLL Remission Occur With Rheumatoid Arthritis Drug Treatments? from Patient Empowerment Network on Vimeo.

Is it possible for chronic lymphocytic leukemia (CLL) remission to occur from rheumatoid arthritis treatments? Expert Dr. Ryan Jacobs explains what he’s observed in his CLL patients who also have RA and take RA treatments.

Dr. Ryan Jacobs is a hematologist/oncologist specializing in chronic lymphocytic leukemia from Levine Cancer Institute. Learn more about Dr. Jacobs.

See More from START HERE CLL

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Why Does Bruising Occur in Chronic Lymphocytic Leukemia?

Which Oncologists Are Chronic Lymphocytic Leukemia Experts?

Which Oncologists Are Chronic Lymphocytic Leukemia Experts?

Can Bone Marrow Return to Normal After CLL Treatment?

Can Bone Marrow Return to Normal After CLL Treatment?


Transcript:

Lisa Hatfield:

Do any rheumatoid arthritis medications help prevent CLL from returning after treatment with FCR?

Dr. Jacobs:  

I do have a fair number of patients that have rheumatologic conditions and some with rheumatoid arthritis. There are some approvals there, and I in no way pretend to be an expert in rheumatoid conditions. But I do know that there happens to be some agents that are monoclonal antibodies directed against CD20 used to treat some rheumatoid conditions. So I do have some patients that are on drugs like rituximab (Rituxan) to suppress their rheumatoid condition and help prevent recurrences.

And then kind of two birds, one stone also are keeping their CLL in a clinically asymptomatic remission, I’m sure I would say, or stable disease. And it comes with the known risk for long-term antibodies, that there are some increased infections there that was particularly concerned during COVID, the worst parts of COVID. But yeah, so there are some potential treatments like that.


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Why Does Bruising Occur in Chronic Lymphocytic Leukemia?

Why Does Bruising Occur in Chronic Lymphocytic Leukemia? from Patient Empowerment Network on Vimeo.

Bruising is a chronic lymphocytic leukemia (CLL) side effect in some patients, but why does it happen?  Expert Dr. Ryan Jacobs explains different reasons that bruising may occur more easily in CLL patients. 

Dr. Ryan Jacobs is a hematologist/oncologist specializing in chronic lymphocytic leukemia from Levine Cancer Institute. Learn more about Dr. Jacobs.

See More from START HERE CLL

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Does Untreated Asymptomatic CLL Carry Risks?

Why Is Early Stage Chronic Lymphocytic Leukemia Treatment Delayed?

Why Is Early Stage Chronic Lymphocytic Leukemia Treatment Delayed?

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Reasons to Get Chronic Lymphocytic Leukemia Second Opinions


Transcript:

Lisa Hatfield:

What causes persistent bruising? Are there more side effects from vaccines that have been discovered recently that were not discovered initially?

Dr. Jacobs:

Yeah. So there are a lot of different things that can cause bruising in a CLL patient. I think one thing that’s just worth noting is that we bruise easier as we get older. Our skin tends to thin, and often older patients are on medicines that interfere with platelet aggregation, and maybe even they’re on blood thinners. So, of course, all those things can contribute to bruising. CLL is a cancer of the aging patient population, average age 70, 71.

So these are patients that are going to be noting more easy bruising in general. But what are the CLL-specific factors that can lead to increased bruising? I would highlight, if patients are having decreasing platelet counts because of bone marrow involvement. And then the…what the second part of this question addresses is the use of Bruton tyrosine kinase inhibitors, specifically and the covalent Bruton tyrosine kinase inhibitors like ibrutinib (Imbruvica), acalabrutinib (Calquence), and zanubrutinib (Brukinsa). They all in varying ways, have been shown to lead to increased bruising and potentially bleeding. And they do tend to interact with the platelets in a way that leads to some dysregulation in platelet aggregation.


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Does Untreated Asymptomatic CLL Carry Risks?

Does Untreated Asymptomatic CLL Carry Risks? from Patient Empowerment Network on Vimeo.

Does untreated chronic lymphocytic leukemia (CLL) that’s asymptomatic carry risks? Expert Dr. Ryan Jacobs explains CLL characteristics that are checked, research results from the CLL12 trial, and trends for treating vs. not treating asymptomatic CLL.

Dr. Ryan Jacobs is a hematologist/oncologist specializing in chronic lymphocytic leukemia from Levine Cancer Institute. Learn more about Dr. Jacobs.

See More from START HERE CLL

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Why Does Bruising Occur in Chronic Lymphocytic Leukemia?

Can CLL Remission Occur With Rheumatoid Arthritis Drug Treatments?

Can CLL Remission Occur With Rheumatoid Arthritis Drug Treatments?

Should CLL Patients Worry About Enlarged Lymph Nodes?

Should CLL Patients Worry About Enlarged Lymph Nodes?


Transcript:

Lisa Hatfield:

So, Dr. Jacobs, if CLL is left untreated due to no symptoms, and the white blood count is up to 150-200,000. Can it transform to another type of cancer? And what are the dangers of not treating without symptoms?

Dr. Jacobs:

Yeah, so a couple points are highlighted in that question. One I would say, is that I would like to highlight, is that there is no specific white blood cell count that says you need to treat CLL. We do sometimes reference doubling time in less than six months or 50 percent or less than two months. But I would just note that actually a lot of specialists are de-emphasizing that criteria even as well. So we are really just focusing on, in terms of objective values on the complete blood count, looking at the hemoglobin and is it less than 10 platelet count? Is it less than a 100,000? And we’re using those as a guide to how healthy the bone marrow is, how much the CLL has invaded the bone marrow, but not specifically the white blood cell count.

So the answer is no, there’s no inherent danger to continuing a patient even into the 100 plus range on observation. Now, in terms of the second part of that question, are there any dangers to not treating asymptomatic patients, we actually just conclusively had the final report, the most recent report of trying to treat asymptomatic patients. And it was the CLL12 trial that was just presented at the European Hematology Association meeting that compared ibrutinib (Imbruvica) to a placebo in a blinded trial in higher risk CLL patients that didn’t meet clinical criteria to treatment. And the overall survival of the two groups after several years of following patients was, there was no difference in overall survival. So yet another study confirming that there’s no…you do not improve survival of patients when you try to treat them early.


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How Can I Ensure My CLL Doesn’t Progress to Richter’s Transformation?

How Can I Ensure My CLL Doesn’t Progress to Richter’s Transformation? from Patient Empowerment Network on Vimeo.

What do chronic lymphocytic leukemia (CLL) patients need to know about disease progression? Expert Dr. Ryan Jacobs explains CLL progression, Richter’s transformation, and treatment updates and emerging research on Richter’s. 

Dr. Ryan Jacobs is a hematologist/oncologist specializing in Chronic Lymphocytic Leukemia from Levine Cancer Institute. Learn more about Dr. Jacobs.

Download Resource Guide   |  Descargar Guía en Español

See More from START HERE CLL

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Are There Signs of Chronic Lymphocytic Leukemia Progression?

Are There Signs of Chronic Lymphocytic Leukemia Progression?

CLL and BTK Inhibitor Treatment: What Are the Risk Factors?

Can CLL Treatment Cause Gastrointestinal Side Effects?

Can CLL Treatment Cause Gastrointestinal Side Effects?


Transcript:

Lisa Hatfield:

And then this patient is asking a pretty specific question, “Cancer patients are always worried about recurrence or worse, a second cancer. How can I be sure that my CLL doesn’t progress to something called Richter’s transformation?” So maybe if you can explain what that is, talk about that a little bit, the Richter transformation?

Dr. Ryan Jacobs:

Yeah. It’s a really aggressive transformation of the CLL into a high-grade B-cell lymphoma. It’s generally a situation where the cancer cell was a CLL cell and then becomes more aggressive and kind of becomes the dominant cancer, because it’s a lot more aggressive than the CLL. The CLL is still there, but then now you’ve got this aggressive lymphoma on top of it.

We are still treating it like we do other aggressive lymphomas in general. We are trying to find better ways to treat it, because these patients do not have good outcomes with standard lymphoma treatments. I’ve been having success recently for my patients that relapse after chemo, and the large majority of patients will relapse after chemo, but I’ve been having some recent success using CAR T in those patients, and also now have a, I was thankfully getting it sort of off-label approval to do that, but now I actually have a clinical trial investigating axicabtagene ciloleucel (Yescarta) in those patients.

So that’s one area where we’re looking, but we like to manage first-line treatment better. There’s going to be a couple of…I was looking at the big cancer meeting, ASCO is coming up, and that’s usually a meeting that’s much more focused on solid tumors, but there usually are a handful of lymphoma presentations. There wasn’t really much to get excited about, I would say, in terms of big presentations from specifically treatment of CLL, but there were a couple of oral presentations, big presentations for Richter. So that’s really great to see. It’s a very hard disease to do clinical trials in, because generally the patients present so aggressively that you just have to emergently start treatment, and putting patients on clinical trials takes a little extra time in most circumstances, so it’s so hard. But there’s, looks at more data with CAR T and Richter, so we’ll get some more information there, with specifically the Liso-Cel product, which is a different CAR T. And then there’s also looking at doing some immune-based therapies to treat relapsed Richter’s as well. That data hasn’t been released yet, so I’ll be interested when they put that data up preceding the presentations.


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Are There Signs of Chronic Lymphocytic Leukemia Progression?

Are There Signs of Chronic Lymphocytic Leukemia Progression? from Patient Empowerment Network on Vimeo.

 What are signs of chronic lymphocytic leukemia (CLL) progression? Expert Dr. Ryan Jacobs shares common symptoms that can signal CLL progression and why it’s important to inform your oncologist.

Dr. Ryan Jacobs is a hematologist/oncologist specializing in Chronic Lymphocytic Leukemia from Levine Cancer Institute. Learn more about Dr. Jacobs.

Download Resource Guide   |  Descargar Guía en Español

See More from START HERE CLL

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How Can I Ensure My CLL Doesn't Progress to Richter's Transformation?

How Can I Ensure My CLL Doesn’t Progress to Richter’s Transformation?

CLL and BTK Inhibitor Treatment: What Are the Risk Factors?

CLL Genetic Markers: What Should I Ask About Prognostic Factors?

CLL Genetic Markers: What Should I Ask About Prognostic Factors?


Transcript:

Lisa Hatfield:

How will a patient know, are there any signs that would indicate their CLL is progressing, any signs the patient should watch out for?

Dr. Ryan Jacobs:

Yeah, we briefly touched on what I’m looking for as the oncologist. In between appointments, the patient, the obvious one is if they…more significant changes in the lymph nodes over shorter periods of time, the oncologist probably would want to hear about that rather than just you waiting on it. Big changes in functional status. If you were functioning pretty well and now you’re getting really short of breath without much exertion, that’s something to take note of. If you’re waking up drenched in sweat all the time and that’s become a more persistent issue, that would be something else to let your oncologist know about.


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CLL and Vaccines | Vital Advice for Protecting Patients

CLL and Vaccines | Vital Advice for Protecting Patients from Patient Empowerment Network on Vimeo.

 What do chronic lymphocytic leukemia (CLL) patients need to know about vaccines? Expert Dr. Ryan Jacobs explains CLL treatments that reduce vaccine response and his vaccine recommendations.

Dr. Ryan Jacobs is a hematologist/oncologist specializing in Chronic Lymphocytic Leukemia from Levine Cancer Institute. Learn more about Dr. Jacobs.

Download Resource Guide   |  Descargar Guía en Español

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How Can I Ensure My CLL Doesn't Progress to Richter's Transformation?

How Can I Ensure My CLL Doesn’t Progress to Richter’s Transformation?

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CLL Genetic Markers: What Should I Ask About Prognostic Factors?

CLL Genetic Markers: What Should I Ask About Prognostic Factors?


Transcript:

Lisa Hatfield:

So we have another patient who has asked a series of questions. Her first question is, “Can you speak to immune vulnerability and the importance of regular vaccination for CLL patients?”

Dr. Ryan Jacobs:

Yes. So we know that having active CLL reduces a patient’s ability to respond to vaccination and increases redirection, we know being on treatment for CLL also produces varying risk depending on the treatment. The drugs that seem to do the most damage to the immune system, and specifically in terms of their ability to respond to vaccination or the antibody treatment like rituximab (Rituxan) and obinutuzumab (Gazyva), and their effects last for many months after that treatment is finished. Unlike the oral drugs which have a short half-life, the antibodies hang around for many months after being administered.

I in general am recommending, as does the CDC, to get boosted every six months for patients with any level of immune suppression and having CLL qualifies you as that. And then I recommend all of the general vaccines that come with age, like, for example, the Shingrix vaccine for shingles is now safe to give to CLL patients because it’s a conjugate vaccine, it’s not a live virus vaccine.

So we’re lucky now with just standard vaccines in the U.S., there are no live virus vaccines that the CLL patient has to worry about anymore, so I definitely encourage shingles, pneumonia vaccines, boosting for COVID. We’ll see if we get an RSV vaccine, that sounds like it’s on the horizon. Flu, of course. And the patient should just be aware based on what kind of treatment that they’re on, they may not have a good chance at responding to these vaccines, but I still try with my patients. The other important element to think about when you’re considering an infection risk and everything is just kind of what’s…obviously, the pandemic has been a very dynamic thing, and certain times there’s been a lot more risk than others. Thankfully, at the time of this recording, we’re doing on probably as good as we’ve done since the onset of COVID. So you have to make your decisions on the situations you put yourself into, based on your personal situation and what’s going on in the bigger picture, risk-wise. Flu season, COVID season, a lot of RSV going around or something like that.


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Is It Aging or My CLL?

Is It Aging or My CLL? from Patient Empowerment Network on Vimeo.

How can chronic lymphocytic leukemia (CLL) patients tell the difference between treatment side effects and normal aging issues? Expert Dr. Ryan Jacobs explains his perspective when fatigue is the only issue for the patient versus patients having multiple symptoms.

Dr. Ryan Jacobs is a hematologist/oncologist specializing in Chronic Lymphocytic Leukemia from Levine Cancer Institute. Learn more about Dr. Jacobs.

Download Resource Guide   |  Descargar Guía en Español

See More from START HERE CLL

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How Can I Ensure My CLL Doesn't Progress to Richter's Transformation?

How Can I Ensure My CLL Doesn’t Progress to Richter’s Transformation?

Can CLL Treatment Cause Gastrointestinal Side Effects?

Can CLL Treatment Cause Gastrointestinal Side Effects?

CLL Genetic Markers: What Should I Ask About Prognostic Factors?

CLL Genetic Markers: What Should I Ask About Prognostic Factors?


Transcript:

Lisa Hatfield:

A patient had asked, and I love this question because I often wonder myself when I get up in the morning, my bones are creaking and popping, “How do you know the difference between,” this patient’s talking about fatigue. How does a patient discern, “Well, this is fatigue from my cancer or my treatment,” versus just normal aging? Whether it’s fatigue or bruising or any side effect.

Dr. Ryan Jacobs:

Yeah. Fatigue is a really…I had an attending physician when I was in my training that said, “Treating fatigue makes me fatigued.” But it’s hard. If it’s really the only problem the CLL patient is having, it can be…all those other problems I had mentioned earlier, the low red cells, the low platelets, the painful nodes, the night sweats, I with close to 100 percent certainty know I can fix those with treatment.

Fatigue, I’m not as confident when that’s the only issue that a patient’s having. I try to differentiate between fatigue from other causes and old age, and specifically to CLL. They try to put it as a metric and say, if you’re having to spend half the day or more just lying around and you’re not able to do your normal activities of daily living, like that’s a severe level of fatigue and treatment should be considered. I’m looking for somewhat of a precipitous decline, not necessarily just kind of the gradual fatigue that you might more relate to aging.

The problem with treating fatigue is you’ll look, if you look at the possible side effects of all of these medicines I talked about, fatigue will be a potential side effect. So you’re sometimes trading one problem and getting another, or maybe the fatigue does get better, but then the patient has some different side effect that’s even worse than the fatigue. So it’s hard to really help when fatigue’s the only issue. But certainly, I have helped some patients with fatigue. We don’t have a test that we can do to know for sure is the fatigue coming from the cancer, or is it coming from something else.


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Can CLL Treatment Cause Gastrointestinal Side Effects?

Can CLL Treatment Cause Gastrointestinal Side Effects? from Patient Empowerment Network on Vimeo.

 What do chronic lymphocytic leukemia (CLL) patients need to know about gastrointestinal side effects? Expert Dr. Ryan Jacobs explains some common gastrointestinal side effects from treatment and how treatment can be adjusted to decrease severity of side effects.

Dr. Ryan Jacobs is a hematologist/oncologist specializing in Chronic Lymphocytic Leukemia from Levine Cancer Institute. Learn more about Dr. Jacobs.

Download Resource Guide   |  Descargar Guía en Español

See More from START HERE CLL

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Are There Signs of Chronic Lymphocytic Leukemia Progression?

Are There Signs of Chronic Lymphocytic Leukemia Progression?


Transcript:

Lisa Hatfield:

We have several questions from a couple of patients regarding a side effect. So the question, “How long will my side effects of my CLL treatment last? And what can be done to reduce those?” And specifically, a patient is asking if there’s a connection with CLL and gastrointestinal issues?

Dr. Ryan Jacobs:

So all of the treatments, including venetoclax (Venclexta), the BTK inhibitors, will have diarrhea listed as a possible side effect. It’s usually low grade. But generally, I have found the gastrointestinal toxicities abate some over time. So if they are present earlier, if you’re able to stick with therapy, they do tend to get better. For the once daily meds, I encourage those patients to try to take the drug in the evening. The GI tract tends to be less active later in the day, and you can sleep off some of the potential gastrointestinal issues. So I’ve had success there. Sometimes we have to lower the dose to just find the best dose to help mitigate some of these. There’s the antidiarrheals that can help if you need them. Imodium. I had a patient I saw earlier this week that Imodium didn’t really work, but good old Pepto Bismol did the trick from time to time.

So certainly though, if the gastrointestinal issues are significantly affecting quality of life, we need to come up with a new plan, whether that’s reducing the dose or changing to a different option.  Specifically, what’s nice about the BTK inhibitors is they all have data that show if you’re having problems with one, you can switch to the other and likely not have the same problem occur. So that’s nice.  Have you ever seen any uncharacteristic side effects several times in your practice? Anything really unique? I’m just curious about that.

Yeah. There’s always the patients, they can have a more severe form of maybe, of a more common side effect, like the…we were talking about diarrhea, I’ve had a patient that actually had a difficult time with venetoclax, had difficulties with the stool incontinence. So that was kind of a severe form of that. It wasn’t so much diarrhea that was the problem. But we were able to ultimately mitigate that with a dose reduction. I would say the way, particularly if it’s an unusual side effect, the best thing to do is to take a break. If it’s a serious side effect that needs to be addressed and it’s affecting quality of life or causing problems, take a break from the treatment. If you take a week off these treatments, particularly venetoclax, taking breaks doesn’t matter. We like not to take long breaks with the BTK inhibitors. But if you take a week off, these drugs don’t have very long half-lives. So if the issue is not getting any better and you’ve been off of treatment for a week, it’s unlikely that that issue is coming from the treatment. So that’s a way I try to sort through some…particularly if they’re unusual side effects sometimes. And certainly, if we deem that the issue  is connected to the treatment, I’ll usually try lowering the dose before just giving up.


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CLL and BTK Inhibitor Treatment: What Are the Risk Factors?

CLL and BTK Inhibitor Treatment: What Are the Risk Factors? from Patient Empowerment Network on Vimeo.

What’s important for chronic lymphocytic leukemia (CLL) patients to know when considering BTK inhibitor treatment? Expert Dr. Ryan Jacobs explains some cardiac risk factors with BTK inhibitors and patients who might want to consider other treatment options. 

Dr. Ryan Jacobs is a hematologist/oncologist specializing in Chronic Lymphocytic Leukemia from Levine Cancer Institute. Learn more about Dr. Jacobs.

Download Resource Guide   |  Descargar Guía en Español

See More from START HERE CLL

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IGHV-Mutated vs IGHV-Unmutated CLL | What’s the Difference

CLL & Relapse: A Look at Available Treatment Options

Are There Signs of Chronic Lymphocytic Leukemia Progression?

Are There Signs of Chronic Lymphocytic Leukemia Progression?


Transcript:

Lisa Hatfield:

So this patient is asking, “For patients who may be eligible for BTK inhibitors, are there specific comorbidities that might contribute to adverse side effects?”

Dr. Ryan Jacobs:

Yeah, so we screen…all BTK inhibitors have some cardiac toxicity. They have been shown with the second-generation BTK inhibitors to have less cardiac toxicity than ibrutinib, specifically atrial fibrillation. So if you have atrial fibrillation, maybe that’s a reason why you might go on venetoclax first as opposed to a BTK inhibitor. But it’s not a contraindication to getting a BTK inhibitor if the atrial fibrillation is under good control. Other cardiac risk factors would include difficult to control hypertension at baseline, or heart failure. These are all things that might make us think twice about using a BTK inhibitor as our first therapy, because venetoclax has no cardiac toxicities.

The other thing to consider is BTK inhibitors all to a degree have, and I describe it to patients, like an aspirin-like effect on the platelets. They do interfere with the platelet binding, which so universally, patients will know to varying levels some easier bruising. And if patients are on, because of say, they’ve had a heart attack in the past and they’re on aspirin at baseline, or what would even be more concerning if they were on a drug like Plavix because they’ve had a stent placed, that would be something that would really concern me and would definitely push me more towards venetoclax (Venclexta), that again, doesn’t have those anti-platelet interactions. Also, patients who are on blood thinners because of a history of blood clot or atrial fibrillation, there is the potential increased risk for bleeding and bruising there as well.  None of these are absolute contraindications, they’re just all what goes into the blender, if you will, of putting lots of information in and coming up with the best treatment decision as personalized for the CLL patient. We’re blessed to have multiple options, but it does make it more of a challenge to find the “best” option. 


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CLL Genetic Markers: What Should I Ask About Prognostic Factors?

CLL Genetic Markers: What Should I Ask About Prognostic Factors? from Patient Empowerment Network on Vimeo.

What’s key for chronic lymphocytic leukemia (CLL) patients to know about genetic markers? Expert Dr. Ryan Jacobs explains genetic markers checked in standard CLL testing, questions to ask your doctor, and common treatments used with specific genetic markers.

Dr. Ryan Jacobs is a hematologist/oncologist specializing in Chronic Lymphocytic Leukemia from Levine Cancer Institute. Learn more about Dr. Jacobs.

Download Resource Guide   |  Descargar Guía en Español

See More from START HERE CLL

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IGHV-Mutated vs IGHV-Unmutated CLL | What’s the Difference

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Transcript:

Lisa Hatfield:

“How can I ask my doctor to make sure I am being tested for serum markers?” And more broadly, I think a lot of patients are a little bit nervous about asking questions of their doctor, because they don’t want to feel like they’re questioning their expertise or doubting them. So how in general can we ask our doctor questions if we hear something? Or how can we approach our doctor with those types of questions?

Dr. Ryan Jacobs:

So I mentioned asking your doctor, “What’s my prognostic markers?” I think is probably the easiest way to get that information. And your doctor should be checking those. The question comes up like, what are the “high-risk” markers? We talked about mutated versus unmutated. Thankfully, our novel treatments, that doesn’t seem to matter. Same goes with…there’s on FISH there used to be, if you found three copies of chromosome 12, that’s called trisomy 12, that doesn’t seem to matter with our newer treatments. A deletion at chromosome 11, again, used to not do as well with chemo. Novel therapies, doesn’t seem to matter.

The one that is still potentially affecting outcomes, even with our novel treatments, are chromosome 17 aberrations, which stately are rare in the initial diagnostic setting, that or a TP53. A deletion at 17p or TP53 mutation probably is only going to be around 10 percent of patients or so. And in the relapse setting though, that number goes up because of the more aggressive cancers emerge, we call that clonal evolution. So maybe in the 20-ish percent range. These patients, we tend to prioritize indefinite therapies first, because it seems like these patients do better if you keep treatment going, as opposed to interrupted therapies like venetoclax (Venclexta). And so we tend to treat those patients with a drug like acalabrutinib (Calquence) or zanubrutinib (Brukinsa) first and then think about the venetoclax later for those patients. 

Lisa Hatfield:

Okay. Okay. And just to clarify, for patients too, I know that a lot of cancers, there are discussions about the 17 deletion, 17p, and then also the TP53 gene. So if I understand correctly, the TP53 gene is housed on chromosome number 17. So if that is missing, then that patient may be missing that gene, that is it considered a tumor suppressor gene, which we want. Is that correct?

Dr. Ryan Jacobs:  

Right. So it’s either missing, which is what we see on FISH with a deletion, or it can be mutated and that’s the next gen sequencing, and often it will be both in those patients. We think with indefinite, there’s some really good data that was just released with zanubrutinib. When they looked at 17p-deleted patients, there’s some long-term follow-up with ibrutinib-treated 17p-deleted patients. With chemo these patients would only get about a year or so, but we’re getting maybe even close to normal outcomes with long-term BTK. But we do know if you just give them a year of venetoclax and obinutuzumab (Gazyva) for six months and then stop, they do relapse quicker than the other patients. So they relapse after about four years. As opposed to with five years of follow-up with that first-line venetoclax approach, there are 62 percent of patients who are still free of progression.

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CLL & Relapse: A Look at Available Treatment Options

CLL & Relapse: A Look at Available Treatment Options from Patient Empowerment Network on Vimeo.

What chronic lymphocytic leukemia (CLL) treatment options are available for relapsed patients? Expert Dr. Ryan Jacobs explains options for patients in relapse and for those seeking additional treatments.

Dr. Ryan Jacobs is a hematologist/oncologist specializing in Chronic Lymphocytic Leukemia from Levine Cancer Institute. Learn more about Dr. Jacobs.

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Transcript:

Lisa Hatfield: 

What treatments do you think are the most beneficial for patients whose CLL has relapsed? What are the poor prognostic indicators for CLL? And along the same lines, what are the high-risk genetic markers for CLL?

Dr. Ryan Jacobs:

It’s a little more complicated discussion in the first-line setting because both are options. At this point in time, we haven’t been…at least those that are, I would say, staying up to date on the CLL data, we have not been using chemotherapy for a long time. So most of the relapsed patients will have seen either one of the BTK inhibitors or venetoclax (Venclexta). And so what we do in the second-line setting is just use the other option that they haven’t seen. The data tells us, when you look at what treatments are being prescribed, most patients are going on BTK inhibitors, and they have been around longer than venetoclax in general. So for a lot of patients, that relapsed treatment is going to be venetoclax. Because that has the best data in terms of treating patients that have progressed on a BTK inhibitor like ibrutinib (Imbruvica) or acalabrutinib (Calquence) or zanubrutinib (Brukinsa).

In the near future, we’ll have pirtobrutinib (Jaypirca) and so maybe, maybe some will get that drug before venetoclax, and that’s probably okay. And so we’ll have that additional option. The complicated patients, and I’ve alluded to this, or what do we do after BTK and Bcl-2? What are we left with? I mentioned PI3 kinase, that’s not a great option. There’s still stem cell transplant out there for young patients that are running out of options. Clinical trial is really what I would like to emphasize there. If you’re a patient that can get to a high volume referral cancer center with a CLL specialist, I would do that if you have seen BTK inhibitors and venetoclax and are looking for other options.


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Concerned About CLL Watch and Wait? Start Here

Concerned About CLL Watch and Wait? Start Here from Patient Empowerment Network on Vimeo.

What do chronic lymphocytic leukemia (CLL) patients need to know about watchful watching? Expert Dr. Ryan Jacobs explains the CLL tests and symptoms he monitors during watch and wait or active surveillance.

Dr. Ryan Jacobs is a hematologist/oncologist specializing in Chronic Lymphocytic Leukemia from Levine Cancer Institute. Learn more about Dr. Jacobs.

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Transcript:

Lisa Hatfield:

So I just want to take a step back and kind of looking at this through the lens of a newly diagnosed CLL patient. You’d mentioned that sometimes you don’t treat every CLL patient. So is there something, if you find a patient who does not need treatment, is there something you tell the patients as far as regular monitoring? Will you monitor them to see if it progresses to the point where it requires treatment?

Dr. Ryan Jacobs:

Yeah. And we’re fortunate that this is a blood cancer that most of the time we can follow with a simple blood count and follow the white count, follow how the…follow the health of the bone marrow by looking at things like anemia, low red cell count, or a low platelet count that we call thrombocytopenia.

So that’s the easiest thing to follow, but I’m also talking with my patients and examining my patients. I want to know if their lymph nodes are causing them a lot of pain, because we should treat that, there’s no reason they should live in pain. I want to know if they’re waking up drenched in sweat all the time, if their quality of life has been really affected by that or a dramatic amount of fatigue that we can’t explain by some other cause. And I also, of course, examine the nodes myself and make sure that there are no alarming findings there. So that’s really what’s involved with checking on a CLL patient that’s on active surveillance, that’s what we call it. And there’s a list of criteria that the oncologist should know in terms of deeming who needs treatment and who doesn’t. And so we’re kind of following the same rules, so to speak, in terms of who gets treated for CLL. 


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IGHV-Mutated vs IGHV-Unmutated CLL | What’s the Difference?

IGHV-Mutated vs IGHV-Unmutated CLL | What’s the Difference? from Patient Empowerment Network on Vimeo.

What’s the difference between chronic lymphocytic leukemia (CLL) that’s IGHV-mutated versus IGHV-unmutated? Expert Dr. Ryan Jacobs explains tests involved in CLL diagnosis and treatment options.

Dr. Ryan Jacobs is a hematologist/oncologist specializing in Chronic Lymphocytic Leukemia from Levine Cancer Institute. Learn more about Dr. Jacobs.

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Transcript:

Lisa Hatfield:

“What is the difference between IGHV-mutated and IGHV-unmutated CLL? And can you talk about treatment considerations for those?”

Dr. Ryan Jacobs:

Yeah. So that’s part of a bigger discussion around the prognostic work-up of CLL and not all CLL is the same, and we’ve done a really good job of figuring out tests to separate out the CLL patients that tend to behave more aggressively and respond to certain kind of therapies, versus those that are more of what we call indolent or slow growing and respond to other kinds of therapies. I do want to say, I haven’t mentioned it yet, we still don’t treat CLL if it’s not causing any problems. And about half of patients get diagnosed as sort of an accident and they get a blood test for something else and their white count is elevated, and that leads to a diagnosis, but they feel fine.  We still leave those patients alone. Even with these good treatment options we have, we recognize that there are a select percentage of CLL patients that don’t ever need treatment, and so we don’t just want to start treatment in everybody. But I do still like to check this prognostic work-up, even if I’m not going to start treatment, but I make sure and ask the patient if that’s what…in line with what they want.

But certainly, if you’re going to start treatment, you’re required by guidelines to check a prognostic work-up, and I would really encourage the CLL patients tuning in to ask their oncologist, “What is my prognostic work-up?” if they’re going to start treatment. Because of the oncologists, unfortunately that have to deal with lots of other cancers, maybe don’t always know the right test to send. I’m very spoiled in that I get to just treat lymphoma and specifically focus a lot of my research in CLL and get to stay up with all this. I don’t know how a general oncologist keeps up with everything, honestly.

But the big three tests are going to be the FISH analysis, fluorescence in situ hybridization. And then IGHV mutational analysis, and then also a TP53 mutation analysis. And I don’t really have time to go through all of those, but IGHV is the question I get a lot. “What is that?” It’s one of these rare findings where it’s actually normal to have a mutation at the IGHV. IGHV stands for immune globulin heavy chain variable region, and it is usually mutated in B lymphocytes because it’s part of the process of a mature lymphocyte that is able to make a lot of different kinds of antibodies. And it undergoes somatic hypermutation, is what it’s called, as the B cell matures.

Generally in oncology, the more mature a cancer is, the less aggressive it behaves and usually the easier it is to manage, and that is the case with CLL. So think of an unmutated IGHV CLL cancer as a more primitive or a more immature cancer clone, and as such, it is harder to treat. In about half of patients will be found to be unmuted at the IGHV and historically, all we had was chemo and we knew these patients weren’t going to respond for nearly as long as the IGHV-mutated patients were to chemo. What’s nice is, with our targeted treatments, particularly the long-term data with the BTK inhibitors, it doesn’t look like it matters whether you’re mutated or you’re unmutated. So that’s one of the really great things with our new treatments for CLL, is it has, the people that have benefited the most are the ones that were doing the worst, so that’s great. It’s not just the patients that were already doing well, that are doing even better. 


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