Start Here: Bridging the CLL Expert and CLL Patient Voice

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Chronic lymphocytic leukemia (CLL) can sometimes feel overwhelming and complicated, but what can patients and care partners do to help improve their care? With this question in mind, the Patient Empowerment Network initiated the START HERE CLL program, which aims to close the gap in the expert and patient voice to build empowerment. 

START HERE CLL Program Resources

 The program series includes the following resources:

Lisa Hatfield and Dr. Danielle Brander

Patient-Expert Q&A Webinar Topics and Key Takeaways

In the Patient-Expert Q&A webinars, CLL experts Dr. Ryan Jacobs from Levine Cancer Institute, and Dr. Danielle Brander from Duke Cancer Institute shared their expert knowledge to help patients and care partners fortify their knowledge and confidence. The webinars provided some in-depth discussion along with key takeaways derived from questions submitted by patients. Some of the discussion covered:

Among some key points from the webinars, Lisa and Dr. Jacobs discussed the importance of genetic markers. Dr. Jacobs recommended CLL patients ask their doctor about their prognostic markers. “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.”

The watch-and-wait phase of CLL, also called active surveillance, is a common term heard by CLL patients. However, there are actually two types of CLL. “While some CLL patients experience very gradual disease progression and are actively monitored during a watch-and-wait phase, other patients may experience a more expedited CLL progression and will need more frequent treatment.”

Treatment advancements for CLL have been moving forward over recent years. Dr. Brander shared her perspective about the advancements. “So over the last decade or even the last five years, for patients diagnosed with CLL, there’s been a very encouraging and marked change in the available treatments…not that many years ago we generally only had chemotherapy or chemotherapy combined with these antibody targeted treatments that we call immunotherapy sometimes. But in the last 5 to 10 years we’ve seen quite a remarkable change in treatments that target, meaning often they go after pathways or ways that the CLL cells have learned to grow or have learned to not die the way that normal cells should, die after certain time points.” 

Vaccines for those with CLL have gathered more visibility in recent years with COVID-19. Dr. Jacobs addressed some questions about vaccination and shared, “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.”

Worries about CLL progression are felt by many patients, and there are some ways to stay alert for warning signs. Expert Dr. Jacobs explained signs of CLL progression including new or worsened drenching night sweats, significant changes in a patient’s ability to function, and major changes in lymph nodes over a short period. Dr. Jacobs also shared some research updates for treatments that have shown success against progression to Richter’s transformation. “…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.”

Some CLL patients wonder about whether they can take a break from treatment. Dr. Brander addressed this question about BTK inhibitors. “…BTK inhibitors are given continuously, meaning, at least so far, the standard way we recommend of those treatments is that they’re taken every day, either once or twice a day, depending on which BTK inhibitor, and they’re taken every day. Unless patients run into progression, meaning the CLL learns to grow through its resistance or patients run into side effects that despite maybe team’s recommendation of changing the dose or holding the medications, that it’s just the medication is just not tolerate.”

Many CLL patients also wonder about the impact of exercise on their treatment response and their duration of treatment response. Dr. Brander explained about the impact of exercise. “I think certainly trials or studies really need to be continuing to look at this, because I think there likely are things that we can be more specific to patients about. There are studies looking at physical fitness and exercise regimens not necessarily specific to CLL, although there are studies being done in that space, but to other cancers showing that physical activity and exercise can help even for patients not on treatment maintain control of their cancer. So general daily activity and exercise are important in studies that look at how do you tailor that to an individual I think are important too.”

Whether patient fatigue is originating from CLL or from symptoms of old age can sometimes be difficult to determine. Dr. Jacobs shared some insight about fatigue. “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.”

Some program participants provided valuable testimonials and insights on what they learned from the START HERE CLL Patient-Expert Q&A webinars:

Testimonials:

  • “I love PEN webinars because I feel I have a direct connection with the best experts. I have many questions for my team after this program, thank you.”
  • “This program was stellar. I learned a lot that I have to address with my doctor.”
  • “I have a greater comfort level with promising treatment options.”
  • “I was most interested in learning about treatment options for relapsed patients and Dr. Jacobs provided great information. THANK YOU!”
  • “This was very helpful as I consider how to support my sister who has been diagnosed with CLL.”

Learnings:

  • “What BTK and BCL-2 inhibitors are…How Fish looks for DNA for Leukemia cells. And how exercise can help any cancer patient. Thanks for the program!”
  • “Even though I am Watch & Wait, I appreciated the information and explanation of the latest treatments.” 
  • “Fantastic program. Learned about many reasons docs decide not to treat.”
  • “I learned about some potential treatment options should I relapse.”

Many other questions were raised during the CLL Patient-Expert Q&A webinars. We hope you can use these valuable CLL resources to build your knowledge and confidence toward becoming a more empowered patient or care partner.

Can Bone Marrow Return to Normal After CLL Treatment?

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Can Bone Marrow Return to Normal After CLL Treatment? from Patient Empowerment Network on Vimeo.

Is it possible for chronic lymphocytic leukemia (CLL) patients to achieve normal bone marrow after CLL treatment? Expert Dr. Ryan Jacobs explains MRD-undetectable status and the typical time period to deep CLL remission.

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:

Does Untreated Asymptomatic CLL Carry Risks?

 Why Is Early Stage Chronic Lymphocytic Leukemia Treatment Delayed?

Why Is Early Stage Chronic Lymphocytic Leukemia Treatment Delayed?

 Should CLL Patients Worry About Enlarged Lymph Nodes?

Should CLL Patients Worry About Enlarged Lymph Nodes?

Transcript:

Lisa Hatfield:

This patient is asking, upon completion of venetoclax (Venclexta) and obinutuzumab (Gazyva) and achieving MRD-undetectable status, how long does it take your bone marrow to achieve improved hemoglobin, hematocrit platelets, white blood cells? And does it always return to normal? And I might add in there just any kind of treatment, does the bone marrow typically return to “normal”? And how long does that take?

Dr. Jacobs:

So the majority of patients treated in the first-line setting and actually in the relapse setting with a combination of venetoclax and obinutuzumab, will have their CLL go into such a deep remission that we cannot detect it in 1 out of 10,000 cancer cells. So that is called MRD-undetectable. Those patients are usually also in complete remission, which means if you look at the bone marrow, you’re not going to see any CLL there. So the majority of patients have their counts normalized while they’re still on the venetoclax. You take it for a year. The complete remission is usually achieved before therapy is completed. And what little, if any CLL is in the bone marrow is not causing a drop in the counts. Now, of course, patients can have the toxicity-reduced counts. And if that’s the case, if it’s a toxicity issue, then it should resolve when you stop treatment. So I would say, usually it does return to normal, if not all…when they’re on therapy, then after therapy. If it’s a relapsed patient that’s seen a lot of therapies though, the bone marrow might never return to normal. 

Lisa Hatfield:

How far out are we from curative therapies for CLL patients with the tougher prognostic indicators?

Dr. Jacobs:

So I think curative is an interesting question, and it can mean different things to different people. But we’ve already shown at the most recent American Society of Hematology meeting, when they looked at the average life expectancy of patients without CLL, since the time that ibrutinib (Imbruvica) got approved and then now CLL patients, the survival curves are overlapping. So as of now, it looks like with our newer treatments that a CLL patient should reasonably expect to live a normal life expectancy. Does that mean cure? Well, if by cure you mean, does the disease go away forever with one treatment? We still don’t think we have that therapy for most patients. But we’ll see as we get longer and longer follow-up with some of these newer agents is there are going to be a proportion of patients that never relapse, that ibrutinib is going to have the longest follow up because it was the first one. I was just looking at a poster at the European Hematology Association meeting where they’ve followed patients seven, eight years out and more than half have still not progressed that got ibrutinib as a first-line therapy. So it’s reasonable to think that maybe some will never progress.

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Should CLL Patients Worry About Enlarged Lymph Nodes?

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Should CLL Patients Worry About Enlarged Lymph Nodes? from Patient Empowerment Network on Vimeo.

Should chronic lymphocytic leukemia (CLL) patients be concerned about enlarged lymph nodes? Expert Dr. Ryan Jacobs shares his perspective on when his patients start treatment due to lymph node enlargement and additional symptoms that become concerning. 

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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Transcript:

Lisa Hatfield:

So this patient is asking, “When you are in the watch-and-wait phase and are feeling lymph nodes getting bigger, when is it appropriate to contact your oncologist?”

Dr. Jacobs:

This is a question that comes out a lot with my CLL patients. It’s a very subjective thing. Lymph node pain, that’s what’s supposed to trigger needing treatment for CLL from a lymph node standpoint. Technically speaking, if there’s a lymph node bigger than 10 centimeters, we’re supposed to start treatment. That’s one of the criteria too. That’s one that I almost never see, because usually patients get uncomfortable with their lymph nodes or their disease progresses elsewhere significantly before a lymph node gets that big.

So discomfort or pain, and that’s up to the patient, and I tell them like, “You have to tell me if this is bad enough that you want to start treatment.” And I have patients that are very different in how they interpret that. And I’ve got some patients that have visibly enlarged neck nodes and have had it for a while, and they don’t feel like they’re bothered by them, even though they’re quite chunky.

And then I have patients that have had lymph nodes that aren’t that big that really bother them. And so we start treatments. It’s just a very subjective thing. The only part I would identify is, you don’t need to just call your oncologist if you’re just noticing a little bit of growth or a node here and there, that’s expected. If you’re on active surveillance, it is expected that over time most patients’ white count will go up. Not all, most patients’ lymph nodes will grow. Not all.

The reason I would call an oncologist to maybe schedule earlier follow-up is if there’s accelerated growth that’s persistent and maybe if it’s associated with new symptoms like feeling really badly, fevers, waking up drenched in sweat. These are all signs that maybe the lymphoma has transformed to a more aggressive type of lymphoma that’s called Richter’s transformation. So that’s when I would be concerned. But low level chronic growth that’s relatively asymptomatic, is not overly concerning. 

Lisa Hatfield:

Hey, as a blood cancer patient, the limited duration treatment sounds like a dream. So this patient is asking, is there a time-limited pill-only treatment regimen yet, or is one in the pipeline?

Dr. Jacobs:

If you live in Europe, ibrutinib (Imbruvica) and venetoclax (Venclexta) got approved. I did a lot of research on that study. The FDA didn’t look as favorably on the comparison arms of the trials that led to the approval in the EU. So we do not have FDA approval. It is on the NCCN guidelines, as an option in…or as another option, that you can consider. The research is ongoing into getting the venetoclax combination approved with the newer BTK inhibitors. I currently am putting a lot of patients on a trial that’s looking at acalabrutinib and venetoclax. So I do think we will have, for some patients, the option, that for some patients that want it, and that seem to fit the, what we ultimately decide is the best patient population for this combination, the option to give a combination of pills for a time-defined period.

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Reasons to Get Chronic Lymphocytic Leukemia Second Opinions

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Reasons to Get Chronic Lymphocytic Leukemia Second Opinions from Patient Empowerment Network on Vimeo.

Why are chronic lymphocytic leukemia (CLL) second opinions a  good idea? Expert Dr. Ryan Jacobs shares his perspective on CLL second opinions and how they can help in patient 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

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Why Is Early Stage Chronic Lymphocytic Leukemia Treatment Delayed?

Why Is Early Stage Chronic Lymphocytic Leukemia Treatment Delayed?

 Why Does Bruising Occur in Chronic Lymphocytic Leukemia?

 Should CLL Patients Worry About Enlarged Lymph Nodes?

Should CLL Patients Worry About Enlarged Lymph Nodes?

Transcript:

Lisa Hatfield:

So say one of your patients, seeing you or seeing a hematologist, maybe a local hematologist who doesn’t see a high volume of CLL, and they ask if…what would, what do you think…or they ask of their doctor, what do you think of me getting a second opinion on my diagnosis? Because patients are scared for one thing and they want to make sure that they’re making the right decisions for themselves. How do you feel about patients seeking a second opinion?

Dr. Jacobs:

I always support it. Of course, with me, I am often the second or even higher number of opinions that has received. But I certainly, I’m not there at the biggest cancer center in the world. I trained there, but that’s not where I’m at now. So I’ve had patients that have gotten even a second or third opinion from me and then go off and get a fourth opinion at MD Anderson. So, in terms of what I want patients to understand with opinions is, one, if you get a lot of opinions, that can just make it kind of difficult. And, so I don’t know if I would really support a large number of different opinions.

I think certainly getting a second opinion is reasonable. But whenever you’re seeking another opinion, I think it really only makes sense if you’re going to a higher level of specification. So certainly it makes sense to go from a general oncologist, getting a second opinion from somebody like myself that sees a lymphoma as a specialty and does research in CLL. But if you’re already seeing a CLL specialist to then seek another one, I think it, yeah, maybe if you want to go to even a bigger cancer center or someone that has maybe published over more years, that’s fine.

But it certainly doesn’t make sense to go from one CLL specialist to somebody that is maybe even less focused in CLL. And sometimes you’d have to kind of be aware of just where you’re at. In general, the specialists are going to be at the larger cancer centers. You might find the name of a larger cancer center in a small cancer clinic. And it’s unlikely that just because the name of that well-known cancer center is on a small clinic site that you’re going to have access to a lot of specialists at that site, usually to support specialists. You’re having to be at a large, usually urban-located cancer center.

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Which Oncologists Are Chronic Lymphocytic Leukemia Experts?

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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

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 Does Untreated Asymptomatic CLL Carry Risks?

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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?

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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.

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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?

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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.

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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?

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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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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?

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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.

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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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What Is Watch and Wait in CLL?

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What is Watch and Wait in CLL? from Patient Empowerment Network on Vimeo.

Chronic lymphocytic leukemia (CLL) patients often experience watch and wait, but what is it? Watch to learn about watch and wait and what CLL patients can expect during this period.

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Transcript:

Chronic lymphocytic leukemia (CLL) patients will often have a period of monitoring called watch and wait. Watch and wait is also known as watchful waiting or active surveillance. During watch and wait, CLL care providers check blood counts and perform medical examinations on a regular basis to gauge whether any disease progression of concern occurs.

One of the reasons that CLL is sometimes referred to as a “good cancer” is due to the fact that many CLL patients remain in watch and wait for a period of years rather than months. Though some CLL patients refer to watch and wait as “watch and worry,” CLL research has proven active surveillance as optimal for some CLL disease states. This strategy of watch and wait is the standard of care when a patient experiences no symptoms and only has small changes in blood counts.

Brian Hill, MD, PhD:

“We’re taught in much of medicine and in much of cancer that early diagnosis and early treatment is very important. And it is very important for many conditions – breast cancer or we’re taught let’s get our mammograms.

And have an early detection and immediate treatment to cure breast cancer. Similarly, colon cancer – get your colonoscopy, get your diagnosis sooner rather than later. And have surgery so you can have a higher likelihood of a cure. In the case of chronic lymphocytic leukemia, it’s never been shown despite multiple attempts over many decades, that treating someone with CLL is – earlier, is going to impact the outcomes and the big picture. But we do know that treating CLL earlier can lead to more side effects earlier.

So, in other words, if you feel fine and your blood counts are just a little abnormal, and there’s not compelling indication to treat, we can safely observe patients until an indication for treatment exists.”

CLL care providers will monitor blood counts and symptoms carefully to determine when a patient should move from watch and wait to active treatment.

What Is the Prognosis of CLL?

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What is the Prognosis of CLL? from Patient Empowerment Network on Vimeo.

Chronic lymphocytic leukemia (CLL) can progress in two different ways. Watch to learn about the prognosis, monitoring, and treatment for each CLL type.

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Transcript:

Chronic lymphocytic leukemia (CLL) patients generally have a better outlook compared to other cancer types – with a higher 5-year survival rate of about 83 percent. There are two types of CLL – one being a slower-growing type and the other a faster-growing type. 

The slower-growing type features higher lymphocytes with slightly low platelets, neutrophils, and red cells. While the faster-growing type produces too many CLL cells in the blood that prevent proper function of red cells and platelets. With the two different types of CLL, patients may have very different patient journeys depending on their disease 

While some CLL patients experience very gradual disease progression and are actively monitored during a watch-and-wait phase, other patients may experience a more expedited CLL progression and will need more frequent treatment. 

Dr. Kerry Rogers:                 

“So, for many people, CLL is a very manageable disease. Like I said, some people have had CLL longer than I’ve been a doctor and have needed no treatment for it. However, there are people with CLL that go on to have a lot of difficulty from it, including not doing well with more than therapy or needing really new, advanced therapies, like something called CAR T-cell therapy.

So, for any individual person, you can never say how it’s going to turn out for them, but we do use our experience taking care of lots of people with CLL to make an educated guess as to if this person’s going to be someone that’s going to expect to need a lot of treatment in their lifetime, or maybe no treatment in their lifetime.”

CLL research continues to advance, and clinical trials bring more refined treatments for patients to improve both CLL symptoms and treatment side effects over time. Ask your CLL specialist if you have questions about research advances and check reliable sources like the Patient Empowerment Network, The Leukemia & Lymphoma Society (LLS), and the American Society of Hematology (ASH) and American Society of Clinical Oncology (ASCO) annual conferences.

How Is Flow Cytometry Used in CLL?

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How is Flow Cytometry Used in CLL? from Patient Empowerment Network on Vimeo.

Chronic lymphocytic leukemia uses flow cytometry as part of testing methods, but how is it used? Watch to learn about the information provided by flow cytometry tests and how the information is used for CLL patients.

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Transcript:

Chronic lymphocytic leukemia (CLL) can be either a slower-growing or faster-growing type depending on the patient. There are several tests that CLL specialists use in diagnosing the condition – with flow cytometry being one of the testing tools.

Flow cytometry provides information about particle or cell characteristics including:

  • DNA gene expression
  • Total DNA
  • Cell structure
  • Cell size
  • Newly-created DNA
  • Amount and type of specific surface receptors
  • Intracellular proteins
  • Transient signaling

Dr. Lyndsey Roeker:                

“So, at diagnosis flow cytometry is the first test done, and what that means is, you take all of your white blood cells in your blood, and you run them through a fancy machine that puts them into buckets. So, you have a bucket of your normal neutrophils, a bucket of your normal lymphocytes, and then you find this bucket of cells that look somewhat unusual. And those have a specific look, if you will, and if they look like CLL cells, that’s how we make the diagnosis.”

The properties found in flow cytometry help to determine the type of CLL that a patient has. CLL specialists then use flow cytometry results along with other blood tests, a patient’s medical history, and other signs and symptoms to establish CLL prognosis and treatment options. Flow cytometry is a key test that confirms CLL diagnosis by checking a patient’s bone marrow or blood cells for signs of CLL, and test results are used to help determine optimal care for each patient.

What Is Chronic Lymphocytic Leukemia (CLL)?

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What is Chronic Lymphocytic Leukemia (CLL)? from Patient Empowerment Network on Vimeo.

CLL stands for chronic lymphocytic leukemia, but what is it exactly? Watch to learn how CLL develops and hear from CLL expert Dr. Jennifer Woyach and patient Adrian.

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Transcript:

CLL is a blood cancer called chronic lymphocytic leukemia, which originates in the bone marrow of patients. Genetic mutations in the blood become leukemic, multiply into CLL cells, and bring on the condition of CLL. CLL is counted as the most common adult leukemia type among countries in the Western world. For the most part, CLL impacts older adults at an average diagnosis of age 70 with slightly more men impacted compared to women with CLL.

Dr. Jennifer Woyach:

“CLL is an interesting disease because it’s one of the only cancers that does not require a biopsy of something for a diagnosis. So, we can, actually, make the diagnosis of CLL based on the peripheral blood.”

Adrian (CLL Survivor): “It happened as a bit of a shock to me, actually. I’ve been quite healthy quite well earlier that week. I’d gone walking in the mountains in Switzerland, but I collapsed one day on the way home from work, and was diagnosed with pneumonia. And during that illness, they realized that my immune system wasn’t working too well, and then my lymphocyte count was high, and I was diagnosed with CLL. I was put on watch and wait, which for some people can last a decade or more, but for me, it only lasted 15 months.”

Sometimes referred to as a “good” cancer among cancer types, many CLL patients stay in an active surveillance period of “watch and wait” for several years.

What Is CD5 Expression in CLL?

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What is CD5 expression in CLL? from Patient Empowerment Network on Vimeo.

Chronic lymphocytic leukemia (CLL) patients display a different CD5 expression than some other blood cancers. Watch to learn about CD5 expression and how monitoring plays into CLL patient care.

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Transcript:

The protein of CD5 is abnormally expressed (or displayed) in T cells and/or in B-1a B cells in chronic lymphocytic leukemia (CLL) and is often referred to as a marker. The small CD5-positive B lymphocytes multiply and accumulate in a CLL patient’s blood, bone marrow, and secondary lymphoid tissues and then create the condition of CLL. Though some blood cancers show as CD5-negative status, CD5 is shown as overexpressed along with CD19 and CD23 combined with weak expression of CD20 and CD79b in CLL patients.

Recent research studies looking at different CD markers including CD5 show that monitoring of CD expression changes over time can help more accurately determine prognosis for CLL patients. 

Dr. Jennifer Woyach:

“So, there is kind of a code of these markers on the surface of all of your blood cells that can tell what type of cells they are. So, for CLL in particular, we’ll see that the cells express some of the normal markers we would see on a normal B lymphocyte.

Things like CD19, CD20, CD23. But they also express a marker called CD5, which is found on normal T lymphocytes but shouldn’t be found on B lymphocytes.

And so, this collection of surface markers can make the diagnosis of CLL. Sometimes, we do need to do extra studies like a bone marrow biopsy or a lymph node biopsy. But oftentimes, those are not necessary at the time of diagnosis.”

As always, check with your CLL specialist if you have more questions about CD5 expression in CLL.

How Is CLL Staged?

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How is CLL staged? from Patient Empowerment Network on Vimeo.

Chronic lymphocytic leukemia has various methods of staging, but what are they? Watch to learn the different methods that are used for CLL staging and how CLL risk is determined.

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Transcript:

Chronic lymphocytic leukemia (CLL) specialists have used three different staging systems to assist them in forecasting disease progression and creating suitable treatment plans for patients. Depending on where or when a CLL patient has been diagnosed and monitored, their specialist(s) may have used the Rai staging system, Binet staging system, and/or CLL International Prognostic Index (CLL-IPI).

Dr. Kerry Rogers:

“So, unlike most cancers, where CLL is staged with CT scans or PET scans, the staging for CLL is actually remarkably simple, and I really like this because it limits the amount of testing you have to do for people, especially the people that might be just monitored for their CLL or observed. You don’t wanna put them through a lot of intensive testing they don’t need. So, the only two things you need to properly stage CLL are a complete blood count and a good physical exam.”

The Rai staging system uses the three stages of low risk, intermediate risk, and high risk to categorize patients. While the Binet staging system uses the three stages of A stage, B stage, and C stage.

 In 2016, the CLL-IPI staging system was initiated worldwide to provide a unified staging system for CLL patients. 

In CLL-IPI staging, the following prognostic factors were identified, including:

  • TP53 deleted or mutated – assigned 4 points
  • Unmutated IGHV – assigned 2 points
  • Serum beta-2 microglobulin concentration greater than 3.5 mg/L – assigned 2 points
  • Rai Stage I – V or Binet Stage B – C – assigned 1 point
  • Patient age over 65 years – assigned 1 point

The point totals from the five factors in CLL-IPI staging correspond to the following recommendations:

  • Low risk – 0 to 1 point; no need to treat
  • Intermediate risk – 2 to 3 points; no need to treat unless the patient is highly symptomatic
  • High risk – 4 to 6 points; treatment unless the patient experiences no symptoms
  • Very high risk – 7 to 10 points; If the decision is made to treat, use novel agents or treatment in a clinical trial instead of chemotherapy