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Diagnosed with CLL? An Expert Outlines Key Steps

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

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

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

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Transcript:

Dr. Matthew Davids

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Could a Clinical Trial Be Your Best Treatment Option?

 

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

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

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

See More From The Pro-Active CLL Patient Toolkit

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Tips for Determining the Best CLL Treatment for You

   

The Truth About CLL Treatment Options

   

What You Need to Know About Developing CLL Research


Transcript:

Dr. Matthew Davids

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

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

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

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

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

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

CLL Treatment Advances: What Do You Need to Know?

CLL Treatment Advances: What Do You Need to Know? from Patient Empowerment Network on Vimeo

Dr. Matthew Davids reviews promising chronic lymphocytic leukemia (CLL) research and shares online resources for patients to stay informed as treatments develop.

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

See More From The Path to CLL Empowerment

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Transcript:

Dr. Matthew Davids

So, this remains a very exciting time for CLL research. The last several years have witnessed the development of a number of these novel agent-based approaches, these oral drugs that target the different pathways inside the CLL cell that the cell survives with.

And so, we’ve really kind of reached the end of the beginning, as I call it, because the first goal, of course, was developing each one of these novel agent drugs on its own. We had to show first that they were safe and figure out what the dose was for patients, and then figure out that they’re effective on their own. And we’ve kind of checked those boxes at this point and reached a point where we have now several different novel agents that are FDA approved already for CLL patients.

And so, I think the big research challenge now going forward is kind of twofold. One is identifying the best combinations of these drugs to put together. And No. 2, identifying which patients will benefit most from which specific combinations.

And so, there’s a number of different clinical trials going on right now looking at these questions.

And just kind of highlighting some of them, one of them is the study of venetoclax with obinutuzumab that I mentioned before. We just had a pretty early readout from this study. But I think it’s gonna be very important to see how patients do over time after they finish the one year of therapy, and both for this study as well as another study called MURANO, which looked at the patients who had already had prior chemotherapy-based regimens and then received venetoclax, in this case with rituximab.

In both cases, when there’s time-limited therapy, I think a key research question is gonna be, when those patients do have progression of the CLL – hopefully years later – do they respond again to that same treatment? Can you use venetoclax again? And do the patients respond nicely? And if they do, then that could be a very nice intermittent treatment strategy to allow patients to be off therapy for a period of time, and then only to receive additional treatment when they need it.

I think another important and exciting area is the combination approaches. And I’ve talked about both ibrutinib and venetoclax as probably two of our most promising new drugs. And so, there are now a number of different studies exploring the combination of ibrutinib plus venetoclax given at the same time. And some of the initial data that’s been published looks very promising. This is a very well tolerated and highly effective combination in the initial studies. It’s all oral, which is nice. So, it’s just pills without the need for any infusions. And again, it’s designed to, hopefully, be a time-limited regimen, and patients hopefully will have a nice durable response after an initial treatment with these two drugs.

There are certainly a number of other drugs that are very promising as well. There’s a whole class that we haven’t talked about yet called PI3 kinase inhibitor drugs. We have two such drugs currently approved now for CLL patients, idelalisib and duvelisib. These drugs also are very effective for treating CLL but tend to have more side effects when they’re given as the first therapy. So, most patients will start with a different therapy. But then the PI3 kinase drugs can be a great option for patients who are in the relapse setting after they’ve had prior treatments.

And there’s another one in development called umbralisib, which also looks very promising and seems to perhaps be even the safest of these PI3 kinase inhibitor drugs. And that’s not yet FDA approved. But we anticipate it’s likely gonna get an approval relatively soon.

And so, combining these new PI3 kinase drugs also with venetoclax is an area of research interest, and a number of other combinations. As you can imagine, the longer the list grows of drugs, the more different combinations we can explore. And we’re trying to use the science from the laboratory to try to determine ahead of time what we think are the most promising strategies because we can’t do clinical trials of every single combination. But those are some of the sort of novel agent studies that I’m excited about right now.

I think the other area that could prove to be very helpful for our CLL patients is CAR T-cell therapy, which stands for chimeric antigen receptor T-cells. CAR T-cell therapy is a way to harness the body’s own immune system to fight cancer.

So, to do this, we would take cells out from a patient. And these are T lymphocyte cells. So, not the CLL cells, but a normal immune cell called a T lymphocyte. And then the cells get educated outside the body to recognize CLL cells more effectively. And they’re grown up and expanded and then reinfused into a patient, where they can go around and kill CLL cells. This can be a very effective treatment and can lead to complete remissions with durability.

And this approach is now in clinical trials. There are some risks to CAR T-cell based therapy. Something called cytokine release syndrome, where patients can get very sick, almost like they have a severe infection, but they don’t have an infection. There’s some neurologic risks to this as well that can be quite scary if they happen but in almost all cases are reversible. So, I think that this is an interesting area of research right now. It’s certainly not yet approved by the FDA for CLL. But we hope that, over time, as the CAR T-cell therapy becomes more effective and has fewer side effects, that eventually it will become a therapy option for patients who have had prior treatments for their CLL.

So, I think despite the fact that we’ve made a lot of advances in the last few years, we still have a lot of work to do in the research area to try to improve our treatments even further for our CLL patients.

So, in terms of how patients can stay informed about all these developments, it frankly is quite challenging, even for us in the field, to keep up with all of this. But there are some resources that can help. The first thing I would say is that the research tends to come along in fits and spurts, and one of the fits is generally the big research meetings where we all gather together to present our new data.

And probably the biggest highlight of the year is the ASH meeting, American Society of Hematology, which is usually in early December. That’s a good time to start looking on the internet for news about CLL, latest treatments, those sorts of things. Often, it’s kind of early December where we first hear about these breaking stories.

Another meeting that’s become big over the last few years is the European Hematology Association, which usually takes place in mid-June. And that’s, again, another time when we often see new data coming about. And one area where I would say this could be very helpful – or one website that I think is helpful – is the CLL Society website. This is led by Brian Koffman, who himself is a CLL patient.

And he kind of collates a lot of the information from these meetings and puts them in one place on his website. He’ll often interview CLL specialists to get their opinion about some of the newest developments. And so, I think Brian’s webpage, CLLSociety.org, can really be a great resource for getting up to date on the latest data.

There certainly are other websites out there now as well which are helpful. For example, another one that I’m working with closely is called VJHemOnc. And VJHemOnc comes to these big meetings, again, interviews a lot of the experts on their takes on the new data.

And I find that this platform in particular, the video-based platform, can be very engaging. It really forces us, as the investigators, to kind of hone down on what the most important key points are and give little snippets about that. And I would think that would be easier for our patients, in many cases, to digest, compared to some of the original papers themselves, which can be quite dense.

So, those would be my major resources that I’d recommend for CLL patients who are looking for additional information on the latest research.

CLL Treatment Decisions: What Path is Best for YOU?

CLL Treatment Decisions: What Path is Best for YOU? from Patient Empowerment Network on Vimeo.

 Dr. Matthew Davids discusses factors that can impact a chronic lymphocytic leukemia (CLL) patient’s treatment course, including genetic testing results, age and co-existing conditions. Want to Learn More? Download the Find Your Voice Resource Guide here.

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

See More From The Pro-Active CLL Patient Toolkit

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Fact or Fiction? CLL Treatment & Side Effects

 

CLL Genetic Tests: How Do Results Impact Treatment and Care?

 

Essential Lab Tests for CLL Patients


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Transcript:

Dr. Matthew Davids

So, there are a number of different factors that go into the decision of which of these regimens to choose for the initial therapy of CLL. One of them is certainly the age and fitness level of the patient and what other medical issues they have. So, as patients get above the age 65, they typically may have other medical issues and may not tolerate more aggressive chemoimmunotherapy-based regimens like FCR. But they could certainly tolerate the novel agent regimens like ibrutinib or venetoclax plus obinutuzumab.

Another consideration that comes into play is the biology of the CLL cells themselves. Some patients with CLL have a higher risk form of the disease. We call this either deletion 17p or TP53 mutation. And those patients typically do not benefit as much from chemoimmunotherapy.

So, even younger patients there, we think about a novel agent-based approach. And we have, again, the longest-term data on ibrutinib for that population, although venetoclax plus obinutuzumab is also a consideration.

And then as we think about debating between these different options, we also think about the specific other medical issues that a patient may have. So, ibrutinib does have some risks in terms of atrial fibrillation, which is an abnormal heart rhythm. It can cause patients to be a bit more prone to bleeding or bruising. And so, for patients who have these existing risks, if they have heart disease already, or if they’ve had issues with bleeding recently, ibrutinib may not be the best option, and venetoclax plus obinutuzumab would be appealing for a patient like that.

Now, with venetoclax and obinutuzumab, it can be such a potent regimen that it can break the tumor cells open too quickly. This is something we call tumor lysis syndrome. It’s not something we’ve seen commonly with this regimen. But we do watch patients very closely when they’re first dosing.And so, for example, patients who have poor kidney function might be at a higher risk for this side effect. And those might be patients, again, where we think about ibrutinib as a very good option, since it’s very well tolerated even by patients who have issues with their kidneys.

So, those are some of the factors that go into it. Certainly, patient preference makes a big difference. Some patients don’t mind the idea of going on a pill, and they like the idea that it’ll control their disease in the long term. And so there, a therapy like ibrutinib may make a lot of sense. Other patients may find that they prefer what we call a time-limited strategy. And using the venetoclax plus obinutuzumab makes a lot of sense there because it’s a one-year regimen, and they can stop. But we don’t know yet the durability of those effects. So, those are some of the factors that go into making this important decision as to what to receive for a first therapy.

I think patients have an increasingly large role in making treatment decisions about what they would like to receive, especially for their first therapy for CLL. It used to be that we had very limited treatment options for CLL, and really the only choice was chemotherapy. And so, that was a pretty easy choice if you had no other options.

So now, as I’ve highlighted, we have multiple different choices. We have chemotherapy-based approaches. We have novel agent approaches, both continuous and time limited. And so, I think it’s helpful for patients to educate themselves about the pros and cons of these different options, to get input from a CLL specialist, if possible, and certainly from their oncologist as well as family members and friends, particularly if they have had friends who’ve gone through this. Getting their advice can be helpful.

And reaching out to online supports as well can be a useful thing in terms of educating oneself. And at the end of the day, the patient has to make the decision as to what they think is best for them.

And it might be a different decision for each individual patient. But the good news for patients, even though it can be challenging to make this decision, all of these options are good ones. And so, there isn’t really a wrong decision here. But there may be some that are better suited for individual patients based on their own preferences.

CLL Treatment Options: What’s Available NOW?

CLL Treatment Options: What’s Available NOW? from Patient Empowerment Network on Vimeo.

Dr. Matthew Davids reviews current chronic lymphocytic leukemia (CLL) treatment approaches and discusses the role of watch and wait.

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

See More From The Path to CLL Empowerment

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Transcript:

Dr. Matthew Davids:   So, we’re very fortunate in CLL that we have a number of very effective treatment options. But I would like to start by highlighting the fact that, for the majority of CLL patients when they’re first diagnosed, a watch and wait or observation strategy is generally preferred.

And this goes back to many years of research showing that there’s no survival advantage to starting early with chemotherapy-based approaches.

And we have some recent data with the newer drugs that, even with these better agents in terms of the tolerability, that early intervention strategies still probably don’t make a difference for our patients and are associated still with side effects and risks. So, the first important thing is to understand that it’s okay to be observed and go on to this watch and wait strategy, and that many patients can stay on this type of approach for many years.

However, once treatment is indicated, we do have a number of therapy options for CLL patients. And these go back to chemotherapy-based approaches, which have been around for quite a while now and now include some newer drugs that we call novel agents that are really transforming how we manage the disease. So, for younger, fitter patients, we can still think about chemoimmunotherapy, and in particular a regimen called FCR, which includes two chemotherapy drugs, fludarabine and cyclophosphamide, and a third drug which is an antibody called rituximab.

And this combination works very well, in particular for patients who are very fit and can tolerate it and remains a viable option. An advantage of this approach is that it’s time limited. It’s a six-month course. But there are some significant side effects from chemotherapy and some longer-term risks. And so, it’s something that we think carefully about before we recommend.

We really think about the novel agents now as being a good option for most of our patients with CLL. And these novel agents are typically pills that, in general, tend to be well tolerated, although each one has its unique risks and potential side effects. We’ve been using the drug ibrutinib now for a few years for the initial treatment of CLL. And this drug targets one of the pathways in the CLL that the cell relies on for its survival. And it’s a drug that patients take once per day. And once they start on it, they usually continue on it for a long period of time. We’ve had patients on this drug up to seven or eight years now who continue to do well.

Ibrutinib doesn’t tend to completely eradicate the CLL. But it often gets patients into very good remissions. And if they tolerate the drug well, then they can stay on it long term and control the disease. But typically, the drug is given as a continuous therapy. So, we don’t have as much experience with stopping it at this point. And so, that’s typically how we recommend giving it, is as a continuous drug.

Now, another new option for the initial therapy of CLL patients is called venetoclax, which is another pill that we have had a lot of experience with over the last few years in clinical trials. It was approved for patients who had previously had treatment for CLL for the last three years or so. And then just recently, the FDA gave approval to venetoclax as a first therapy for CLL patients. And we typically give this in combination with a different antibody drug called obinutuzumab, which is given intravenously.

So, this regimen, which we call venetoclax plus obinutuzumab, is typically given for a six-month combination course, followed by about six additional months of venetoclax pills. And then patients stop therapy at that point.

So, one of the advantages of this approach is that, like the chemotherapy, it’s a time-limited approach for one year. And we can often see very deep remissions that allow patients to remain off therapy for a period of time afterwards.

One of the issues so far is just that we don’t have as long-term follow up as we do with ibrutinib. So, we don’t know what’s gonna happen to these patients seven or eight years after they’ve started venetoclax plus obinutuzumab. We certainly hope that this one year of therapy provides a durable response for patients, and it certainly looks promising in that regard so far. But we currently have more long-term experience with ibrutinib as an initial treatment.

So, these are kind of the main options that we think about for patients who need their first therapy for CLL. We always think about observation first. But when patients do need treatment, we move toward either a chemoimmunotherapy-based approach with a regimen like FCR, or ibrutinib, or venetoclax plus obinutuzumab. And so, it’s great to have all these very valuable and effective options for our patients.

Chronic Lymphocytic Leukemia (CLL) Defined

Chronic Lymphocytic Leukemia (CLL) Defined from Patient Empowerment Network on Vimeo.

What is CLL? Dr. Brian Hill defines chronic lymphocytic leukemia (CLL) and explains how it differs from small lymphocytic lymphoma (SLL).

Dr. Brian Hill is the Director of the Lymphoid Malignancies Program at Cleveland Clinic. More about this expert.

See More From the Path to CLL Empowerment

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Transcript:

Dr. Brian Hill:

So, chronic lymphocytic leukemia is a term that refers to a cancerous condition in which the abnormal or cancerous white blood cells are a type of B-cells with certain characteristics that are present above a certain threshold in the blood. Those same cancer cells can also grow and divide and set up shop in other organs besides the blood and bone marrow.

And that can be a lymph node, spleen and sometimes we find the exact same type of cell in a lymph node or other parts of the body. And we don’t find it in large quantities enough in the blood. And when that happens, we call it small lymphocytic lymphoma or SLL. So, people get very confused by the terminology, “Do I have leukemia, or do I have lymphoma.” And so, a lot of times there’s a reference to a condition called CLL-SLL. CLL-SLL really is one disease.

And the term leukemia or lymphoma really just refers to where is the predominant location for the abnormal cancer B-cells. Are they in the blood or are they in the tissue?

If it’s in the blood, mostly above 5,000 cells per microliter, that’s the cut off. If it’s in the blood predominantly, it’s CLL. But if those same cells are in the lymph nodes or the spleen but not above that threshold of 5,000 in the blood, then the term is small lymphocytic lymphoma. And often times that diagnosis made from a tissue biopsy or a lymph node biopsy rather through a blood test or a bone marrow biopsy. Really, these are the same disease. And even physicians who don’t practice in this area get confused about it.

And it’s important to know that they can be treated exactly the same and are interchangeable. Rarely I’ve seen a mistake be made that someone who has a diagnosis of SLL or small lymphocytic lymphoma is treated with the types of chemotherapy drugs that we would typically use for indolent forms of lymphoma.

And some of those therapies overlap. So, there are biologic similarities and clinical similarities between B-cell lymphomas and CLL-SLL for sure. But there is a lot of nuance in B-cell lymphomas, and not every single treatment that works really well for B-cell lymphoma should be used in CLL or SLL.

You’re Not a Guinea Pig: Understanding Clinical Trial Participation

You’re Not a Guinea Pig: Understanding Clinical Trial Participation from Patient Empowerment Network on Vimeo

“Will I be a guinea pig if I participate in a clinical trial?” CLL expert Dr. Brian Hill explains the clinical trial process and addresses common patient fears and misconceptions.

Dr. Brian Hill is the Director of the Lymphoid Malignancies Program at Cleveland Clinic. More about this expert.

See More From the Path to CLL Empowerment

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Transcript:

Dr. Brian Hill:

So, one of the first questions many people ask about being a clinical trial participant is, “Am I a guinea pig?” And what I would say is we’re always practicing medicine. Anything we do, we’re practicing.

But we are always trying to get better whether it’s formally on a trial or not. In terms of side effects of treatment, no matter what – if we have the treatment available, any medication can potentially cause side effects. And it’s very difficult to predict. So, even if you are not on a clinical trial, you could be treated with a standard therapy and potentially have problems or difficulty with it. In terms of clinical trials, it depends where in the sort of journey you are in. If you have never been treated before and now you need to be treated, there are trials that are appropriate for people who are at their first line of treatment.

And this is not typically where we are experimenting with new drugs. So, this is typically where we have established treatments or just sort of trying to compare which one is better. Sometimes these are randomized.

So, there’s a flip of a coin, and you can be assigned to one or another. And I understand why many patients may not want to have their treatment determined by chance. But I would keep in mind that usually if this is being done, it’s been vetted through not just the institution where they are being treated, but often times through review boards throughout the country who basically say, “We think it’s okay to have a flip of a coin decision here because if we have a great treatment which is A and a great treatment which is B and we really don’t know if A or B is better, it’s okay to sort of have a randomization where you may get A or B.”

Sometimes A is the standard and B is likely to be better, but we don’t really know that B is better. And the only way to get the second option would be to be on the clinical trial. So, in that case if you are enrolled, the “worst” option would be the standard.

But it may give you the option of being even better than the standard. And again, if we knew that the second option was better then it wouldn’t be a clinical trial, it would be our standard.  This is sort of how we make progress. And it requires a buy in from the medical community and physicians, but also, it’s important that patients feel comfortable with it. So, that’s kind of for front line treatment. In terms of subsequent therapies, again there are a lot of very good standard treatments available.

And sometimes there are new drugs that are being developed. If the new drug has never been given before to a human, that’s called a Phase One trial. And typically, those are given or offered to people who have had many other lines of therapy and may not have other good options. But sometimes we know that the new drug has been given to people, it’s safe.

The side effect profile is already known even if it hasn’t been given to large numbers of people. And in those cases that would be something around something often called a Phase Two trial where we know it’s safe, but we’d love to see how well it works. And that’s an option for patients as well.

Right. So, outside of talking with your hematologist/oncologist or CLL specialist, there are many other resources for getting information about CLL. The Lymphoma Research Foundation, The Leukemia Lymphoma Society and the CLL Society are all great organizations that have useful websites.

They have 1-800 numbers you can call into. Many of these groups have – I know the CLL Society has a support group in many cities that’s held on a regular basis. And often times there are patient meetings organized through LLS or LRF, the two groups that I mentioned, that allow patients to come and learn from each other and also ask questions of specialists who may be speaking at those events.

An Overview of New CLL Treatments

An Overview of New CLL Treatments from Patient Empowerment Network on Vimeo

Are there new CLL treatment approaches that patients should know about? Dr. Brian Hill reviews the “explosion of new treatments” in the past few years.

Dr. Brian Hill is the Director of the Lymphoid Malignancies Program at Cleveland Clinic. More about this expert.

See More From the Path to CLL Empowerment

Related Resources

Tips for Determining the Best CLL Treatment for You

Fact or Fiction? CLL Treatment & Side Effects

CLL Genetic Tests: How Do Results Impact Treatment and Care?

 


Transcript:

Dr. Brian Hill:

So, there’s been an explosion of new treatments for CLL just in the past five years. As of before 2014, most of the treatment we had involved both traditional chemotherapy drugs with antibodies.

Those antibodies include Rituximab and more recently other antibodies such as obinutuzumab. The explosion that I’m referring to is really in the development of very effective and generally well tolerated targeted agents. The most well known in the first one of these was Ibrutinib which inhibits a protein that tells the CLL cells to grow and divide called BTK. There are other blockers or inhibitors of BTK that are now approved include Acalabrutinib. The side effect of these are slightly different, and there are reasons why you might choose one or the other.

There’s also a very potent medication called Venetoclax which is now used – which has a different mechanism of action than BTK blockers.

Many of these work better when you combine them with the antibodies I mentioned. And so right now a lot of the research that’s ongoing is examining the utility of combining these agents or how to best sequence them. So, much of the decision about how we can best treat patients is derived from really well done, well designed clinical trials. And sometimes clinical trials can give patients an option that’s not yet a standard but is likely to become a standard.

Or it can give you access to a drug that is promising and not yet widely available. So, there are definitely times to seek – at least ask the question whether a clinical trial is a good option or the best option.

And there may be times where it is not appropriate, and the standard treatments are very reasonable and may require fewer visits to a referral center to be treated. So, I think it’s worth having that conversation both with the primary hematologist/oncologist as well as the CLL specialist.

Not to Worry! Your Guide to Watch and Wait

Not to Worry! Your Guide to Watch and Wait from Patient Empowerment Network on Vimeo.

 Watch and wait, or active surveillance, often feels like watch and worry to CLL patients. Dr. Brian Hill provides a comprehensive guide to the period of time before CLL treatment begins and shares approaches for managing anxiety.

Dr. Brian Hill is the Director of the Lymphoid Malignancies Program at Cleveland Clinic. More about this expert.

See More From the Path to CLL Empowerment

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How to Learn More About Your CLL

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Transcript:

Dr. Brian Hill:

So, watch and wait is the term that’s referred to for not actively treating a patient with CLL after the diagnosis. As many people probably out there watching know, the diagnosis of CLL is often made incidentally or accidentally through routine laboratory tests that are done for some other reason.

Maybe they are going to have surgery. Or maybe they are going to have just a primary care checkup. And blood count shows too many white blood cells. And everything else is fine. The patient feels normal. There’s no symptom. But it leads to a referral usually to a hematologist who then does more testing and makes a diagnosis of chronic lymphocytic leukemia. The word leukemia is very scary because it often conjures up images of acute leukemia which is a disease that can make people very sick very quickly.

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 the 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. And what I tell patients is that if we treat today, the treatment will work.

If we treat tomorrow, the treatment will work. And if we treat in five years, the treatment will work. So, there’s – we have very good evidence that delaying treatment until you need it does not compromise the likelihood of the treatment working. So, it’s a little bit of a different mindset from other types of cancer where we are taught to treat early and immediately. So, a lot of times people will call it watch and worry instead of watch and wait, and there’s a lot of anxiety about that.

Again, their diagnosis has the word leukemia in it. It can be a very scary time. And it takes a little bit of trust to be convinced that you don’t need to be treated just because you have it. And that’s often times when we do get second opinions if the first hematologist/oncologist says it’s okay to watch it and wait. We don’t need to treat. A lot of the time people then seek another opinion to confirm that’s accurate. And in most cases – I would say 90% of the time when I’ve had a second opinion for a patient who’s been recommended to watch and wait, I typically concur with that recommendation.

So, during watchful waiting or – I like to call it active surveillance because it’s not that we aren’t doing anything, we are surveilling or monitoring. And the two things that we monitor are symptoms and blood counts. So, it sort of begs the question that many people ask which is, “If you are not going to treat me now, when will you treat me? When will I need to be treated?” And the first indication – the first thing we look at is symptoms. So, if you have symptoms of significant fatigue to the point where you are really having a difficult time functioning.

Or if you have drenching night sweats that wake you up from night and make you change your nightclothes. Those type of symptoms would push us to treat. So, those are the things that are being asked of patients at their regular follow up which is usually every two or three months initially.

And sometimes can be spaced out to every four to six months if things are stable. But usually during the first year you want to be checking on folks every two to three months. Weight loss would be another symptom to look out for – sort of unintentional weight loss. The other thing we monitor is the blood counts. So, with a simple CBC or complete blood count, we can see what is happening with the white blood cell count which may and often goes up.

And a lot of folks focus on the white blood cell count and its trajectory and how that is rising. Some people’s white blood cell count can fluctuate. Others can stay relatively flat. And some people do have a continued rise on the white blood cell count. The white blood cell count in and of itself is not the final reason to recommend treatment.

But with time, as the white blood cell count goes up, we sometimes see the other numbers going down. And actually, the other numbers going down are the ones that are more important. Those numbers are – the red blood cell count measurement which is usually measured by hemoglobin concentration or hematocrit. And then the other is the platelet number. So, if either the hemoglobin or the platelet number gets below threshold, those are typically indications for treatment.

So, during this period of observation or active surveillance – watchful waiting, whatever term you choose. This can go on for years.

And it can be associated with anxiety. So, trying to do things to cope with managing anxiety is important. Other things that many people are interested in are – is diet. So, do we know of a particular food or food group that we should focus on? Or is there something we should avoid? And the short answer to that is that many – it’s a difficult topic to study. As you might imagine, diet can be so varied around people. And in a typical week the average person eats so many different types of foods that it’s difficult to focus in on one particular thing.

What we can say is that in general for health, clearly fresh fruits and vegetables are the best source of nutrition. And also, are best for your health.

Avoiding processed foods and processed meats and other foods that are high in saturated fats is probably important in general for your health. Although we can’t say specifically that it’s definitely going to make an impact in the white blood cell count or the trajectory of the CLL. In terms of supplements and natural products, many people are interested in this topic. And again, it is a difficult one to study. Some of the natural products out there are purified forms of things from plants and other ingestible herbs and so forth.

But the problem is, is that if you take any component – even if it’s natural occurring, take it in large quantities it can lead to other problems. There was a well-known study from – that studied the impact of green tea extract on the white blood cell count.

And if you took large quantities of green tea extract, it seemed as if it did sort of lower the white blood cell count a little bit. But some people also had abnormalities of their liver function as a result. So, I don’t recommend green tea extract. And I instead say, “If you like tea and you want to drink green tea, I think that’s probably fine.” But I wouldn’t do it in excess. And just maybe try to incorporate it into a balance diet otherwise.

Why You Need a CLL Specialist

vWhy You Need a CLL Specialist from Patient Empowerment Network on Vimeo

Why should you seek care with a CLL specialist? Dr. Brian Hill outlines the benefits of seeing a CLL expert and advice for approaching a second opinion. Need help speaking up? Download the Office Visit Planner and bring it to your next appointment here.

Dr. Brian Hill is the Director of the Lymphoid Malignancies Program at Cleveland Clinic. More about this expert

See More From The Pro-Active CLL Patient Toolkit


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Nervous About A Second Opinion? How to Confront Your Fears

 


Transcript:

Dr. Brian Hill:

Patients should consider seeing a CLL specialist because oncology is a very complicated field. There are many different types of cancers that oncologists treat. And particularly in smaller hospitals, maybe with general oncologists who see lung cancer, colon cancer, breast cancer and CLL as well as many other types of – patients with many other types of problems. It’s very difficult to stay 100% up to date on all those fields. All of oncology is very rapidly evolving.

And the progress that’s being made in all the diseases I mentioned is very fast paced. And so, things change. And there’s new data emerging all the time. And CLL specialists or lymphoma specialists are able to stay more up to date on these topics. And usually that can result in maybe better options for patients.

So, we often get second opinions or third opinions for patients with CLL.

And one of things patients are understandably concerned about sometimes is the impact this will have on their primary oncologist. Maybe they are from a smaller town or have a smaller hospital. They have an oncologist, hematologist, gynecologist who they like, and they trust, and they don’t want to hurt their feelings or damage the relationship because they may need their primary or local hematologist, oncologist to help them if they are sick or something goes wrong.

So, I think that most oncologists recognize that – again, the field is very complicated. And it’s common for people to seek opinions from referral centers. So, I would say the best thing is to be up front about it. And explain to their primary that it’s not that they don’t like them or don’t trust them.

But it’s important – it’s their health. And they really want to make sure they have another set of eyes. And I even sometimes encourage my own patients that if they have questions about what I’m talking to them, to welcome another opinion. And if there’s good communication about it, I don’t think that you should be concerned about the sort of hurt feelings aspect of it.

Fact or Fiction? CLL Causes and Symptoms

Fact or Fiction? CLL Causes and Symptoms from Patient Empowerment Network on Vimeo.

How do you decipher what’s fact and what’s fiction when it comes to chronic lymphocytic leukemia (CLL) causes and symptoms? Dr. Kerry Rogers shares updates in CLL research and tackles common questions and misconceptions.

Dr. Kerry Rogers is a hematologist-oncologist at The James Cancer Hospital and Solove Research Institute. More about Dr. Rogers here.

View The Fact or Fiction? CLL Causes & Symptoms Resource Guide


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Fact or Fiction? CLL Treatment & Side Effects

  

Overwhelmed By a CLL Diagnosis? Key Steps to Take

  

CLL Genetic Tests: How Do Results Impact Treatment and Care


Transcript:

Patricia:                      

Welcome to Fact or Fiction: CLL Causes and Symptoms. Today, we’re talking about chronic lymphocytic leukemia. We’ll debunk misconceptions about CLL causes and symptoms. I’m Patricia Murphy, your host. Joining me today is Dr. Kerry Rogers. Dr. Rogers, thanks so much for taking the time. Why don’t you introduce yourself?

Dr. Rogers:                 

My name is Kerry Rogers. I am a hematologist, and I work at the Ohio State University in Columbus, Ohio, and thank you very much for inviting me. This is one of my favorite topics – talking about chronic lymphocytic leukemia.

Patricia:                      

Fantastic. Well, before we get started, this program is not a substitute for medical advice, so please, consult your medical care team or you – before we get started, this program is not a substitute for medical advice, so please refer to your healthcare team with any questions.

Patricia:

Dr. Rogers, let’s just get a brief overview of CLL and how it progresses.

Dr. Rogers:                 

So, I’m sure everyone already knows that chronic lymphocytic leukemia is a chronic blood cancer of a cell called the B lymphocyte, and with the frequency that people are getting blood tests these days in the United States, the most common way that I see people diagnosed with this at this time is actually just having an increased white blood cell count when they went to get routine blood counts.

So, it seems like the majority of people being diagnosed are diagnosed at a time when they’re not actually having symptoms from the disease, and maybe everyone already knows or not, but the way that’s managed is that the disease is actually just monitored until some sort of what I like to call “problem” from it develops.

So, I’ll go over what the problems are that can come along as the CLL progresses, but it’s important to realize that there’s many people alive and living with CLL doing very well and not having any problems from the disease yet, and I’ve seen a couple people that have had this disease longer than I’ve been a doctor, and one person that almost had this longer than I’ve been alive with no problems from it.

So, developing something from CLL that’s gonna need treatment is not universal. So, as the – for the majority of people, though, CLL – over its natural history – will go on to progress to cause what I like to refer to as “problems” from it. Some people call them “treatment indications.”

So, when problems are developing is about the time you consider treatment before you get really sick from it, and there’s a couple main ways that the CLL can cause problems. One is that the CLL can build up in the places where those cells live, which is the lymph nodes, so people can get really big lymph nodes in their neck, in their groin area, sometimes inside the body, causing problems. And, lots of people have small lymph nodes that aren’t causing problems, and that’s okay, but if they become really big or problematic, then it’s time to do something about them.

The cells can also build up in the bone marrow, so the bone marrow produces all your healthy, normal blood cells that go into the blood and have a lifecycle in the blood. So, if your bone marrow fills up with CLL cells, then you can’t produce the regular,  healthy blood cells, and it’s time to do something about the CLL.

Sometimes, the white count can get really high, and that’s not always a reason to do something, but most people do see – over the natural history or course of having CLL – their white blood cell count and lymphocyte count increases, and there’s not actually a firm number where you say, “Boy, you hit X number, it’s time to treat this,” but if the count is increasing rapidly, then usually, you want to treat this before it increases so much that you develop an issue from that. And then, the last category of things that happen with CLL that’s a problem from it are what we call constitutional symptoms.

So, this can be fatigue that’s limiting your activities, like I took care of someone that was too tired to get the mail from his porch due to CLL. He’s doing great now, but that would be a problem. Sometimes drenching night sweats or an extreme weight loss – and, I’m not talking about people that do Atkins diet lose weight, I’m talking about people that are eating everything and losing weight just because of the CLL.

And, the reason this happens that – CLL is a cancer of B lymphocytes, which are immune system cells, so they can release some of the same chemical mediators that your immune system releases for an infection, and that’s what causes some of those symptoms. But, the main things that progress over the course of having CLL are increasing lymph nodes, lowering of your healthy blood counts due to increasing CLL in the bone marrow, the white count can go up rapidly, or people can develop really problematic constitutional symptoms from it.

Patricia:                      

Let’s talk a little bit about how CLL is staged, Dr. Rogers.

Dr. 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.

So, in the United States, we use something called RAI staging, which is R-A-I staging, and before I launch into what it is, I will just say that even RAI stage 4 CLL is very treatable, and people do well for many years, so this is not the same as when you think about lung cancer or breast cancer staging, where stage 4 is a much worse spot than stage 1. The staging for CLL – all of it is still very treatable.

So, RAI stage 0 is when you only have an increase in lymphocytes, which is the CLL cells in the blood. Stage 1 is when you have increasing lymph nodes in addition to that. Stage 2 is an increased size of the liver or spleen. And then, if someone has anemia from CLL, then it’s stage 3, and stage 4 is if you have low platelets from CLL. So, 3 and 4 are indications that the bone marrow’s not working well due to CLL.

Patricia:                      

Dr. Rogers, it seems like CLL is a very manageable disease. What are you considering when you’re making a prognosis with a patient?

Dr. 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 gonna 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 gonna be someone that’s gonna expect to need a lot of treatment in their lifetime, or maybe no treatment in their lifetime.

And, the main things we look at in addition to just the staging or are they having symptoms or problems from CLL yet is molecular testing. So, these are genetic tests just on the cancer cells, so they’re not genetic tests that other people in the family get tested for, it’s just changes in the cancer cells, so that can give us a guess as to how long before people need treatment and how well they’ll respond to treatment.

And, I know a lot of people are probably already familiar with this, but there’s a particular chromosome change you can test for called deletion 17p, and that predicts a shorter time to needing treatment, needing more treatments in your lifetime, maybe going on to needing those advanced treatments like CAR T-cell therapy.

It used to be recommended that people with 17p get regular like-donor stem cell transplants, which, in some cases, is still done. And then, on the other end of the spectrum, there’s a chromosome change called deletion 13q, which predicts that in many cases, people don’t need treatment for many years and do very well. So, there’s a panel of chromosome changes that can predict where people are gonna fall on the spectrum.

The other chromosome change that’s become important is something called complex karyotype – and again, this is just in the CLL cells, but the karyotype is the arrangement of the chromosomes and these – the other tests I was talking about are chromosome changes picked up with a test called FISH. This is just looking at all the chromosomes, what they look like, and if there are three unrelated genetic abnormalities are more, it’s something called a complex karyotype, and it predicts people will fall in this category of needing more treatment or having more things to do with their CLL in their lifetime rather than not.

And then, the third thing that is really important is something called – and, this is gonna sound long – but, it’s immunoglobulin heavy chain gene mutational status, and mutations in the immunoglobulin heavy chain gene occur normally as these B cells mature, so people that are mutated have more mature cells that became CLL, and people that are unmutated have less mature cells, and people who are mutated that have more mature cells tend to have fewer problems from CLL in their lifetime, and there’s a few implications for CLL treatment for that category.

So, I kind of take all those things into consideration, and then, the other thing that I think is important to consider is newer molecular testing, but that’s still in development, so I think I’ll just end there for now in what I take into account.

Patricia:                      

I did want to ask one follow-up. Dr. Rogers, how often do you like to check in with your patients with CLL?

Dr. Rogers:                 

Oh, that’s an excellent question, because I think it really depends on how they’re doing.

So, people that have had a lot of changes in their CLL, like the white counts increasing, healthy blood counts going down, lymph nodes changing – then usually, I see them back more often, so I even see someone maybe six or eight weeks later if they have a lot of changes. And then, generally, people who are having changes in their CLL are taking treatment for CLL; I’ll see them at least every three months.

However, like I said, there are people who have had this CLL for decades with no changes in how their disease is, so those people I’ll see every six months, or even sometimes once a year, especially if it’s been 10 years and nothing has changed with the CLL. Even though I like them and enjoy seeing them, I’m sure they have things they’d like to do rather than coming to see me.

Patricia:                      

Here we go. Dr. Rogers, let’s talk about facts and fiction around CLL. Here’s what we’ve heard from CLL patients. Are these fact or fiction? “Exposure to pesticides caused my CLL.”

Dr. Rogers:                 

So, this is a very difficult one, and I will preface this by saying I’m not actually an expert in environmental exposures. I am more an expert in CLL management. But, there is some evidence that exposure to pesticides, including Roundup, increases the risk for developing non-Hodgkin’s lymphoma, and there’s a class-action lawsuit against Roundup that my patients keep asking me about.

I think it’s really hard to say for any one person whether or not their cancer is caused by pesticide exposure. If it’s someone that sprayed Roundup in their garden a couple times, then no, I wouldn’t think so. If it’s someone that was bathing in it regularly, exposed to it on the farm all the time, then it might have contributed, but there’s usually more than one thing that goes into someone getting CLL, so I would never plant the entire blame for something on one particular exposure, but I do think it’s quite possible that pesticide exposure can increase a person’s risk for developing CLL and non-Hodgkin’s lymphoma.

Patricia:

This is probably applicable just to veterans. “I was exposed to Agent Orange, and it caused my CLL.”

Dr. Rogers:

So, the same stuff I said about pesticides applies to Agent Orange, but Agent Orange can be a factor in developing CLL. It is in the VA list of diseases associated with Agent Orange exposure. So, for anyone that was exposed to Agent Orange that developed CLL, I would really encourage them to go to the VA and get their Agent Orange intake interview because they are likely entitled to VA benefits because they have CLL and were exposed to Agent Orange.

Patricia:                      

Do you hear that often from your patients who were exposed to Agent Orange?

Dr. Rogers:                 

That they’ve gone to the VA? Yes. Actually, I have a couple people that – many of these people get care at the VA, which is also great, but I do take care of a couple of people who have VA benefits due to Agent Orange exposure who have CLL for sure.

I also have a couple people that, despite the fact that they were exposed to Agent Orange, didn’t feel like going to the VA and seeing if they could get benefits, and I think that’s very reasonable, too. Whether or not people wanna do that is an individual decision, but is definitely on the list of Agent Orange exposure-related diseases. And so, the VA could provide care, medications for CLL, and in some cases, other financial benefits, so for anyone who would like, I think contacting the VA if you have CLL and were exposed to Agent Orange is not a bad idea.

Patricia:                      

How about this one? “CLL is only a disease of the elderly.”

Dr. Rogers:                 

Oh. Well, that one is definitely not true. So, CLL is not really a disease of children. I’ve never seen someone under 18 with it, and of course, the median age of diagnosis is somewhere between 65 and 70, sort of around 65, so that means that there’s a lot of people less than 65 living with CLL.

I’ve seen people as young as 20, I’ve seen some people in their 30s, I see many people in their 40s and 50s, and also, part of this question is what do you consider elderly? I don’t really know that I consider people in their 60s elderly in many cases. So, people in their 90s are usually willing to accept that they’re elderly, but people in their 60s, often, I wouldn’t call them elderly, and I know you draw these age numbers to say you’re a senior citizen, but there’s more things that contribute to the word “elderly.”

So, I guess what I’d say is this is – CLL is definitely not exclusively a disease of the elderly. There are many people in their 40s living with this, and I’ve seen people as young as their 20s, and then, also, you gotta figure out for yourself where you’re gonna draw the line and say “elderly.”

Patricia:                      

Sure. How about this one? “CLL is genetic, and my children may inherit it.”

Dr. Rogers:                 

So, this is a very difficult question. Instead of saying CLL is genetic, I think what I would say is that CLL is heritable, meaning it can run in families.

And, the rough estimate is that 1 in every 10 people that are living with CLL have someone in their family that will also get CLL, so we know that it does run in families – not in every case, but many cases – and I think at least in terms of people I’ve seen with this, people come and see me, and they either say, “Oh yeah, sure, my cousin, my uncle, my parents, my brother – everybody had CLL.” Or, they’ll say, “Really? Someone else in my family could get this?” So, it becomes pretty clear who’s gonna have it in their family and who’s not, but it does increase the risk of your family members getting CLL.

The interesting part of that is as a CLL community, I think we have not done a very – or, we have not been able to pin down a gene that causes it. So, if you think about breast cancer, colon cancer, you can say, “Oh, someone has a BRCA mutation, the family needs to get tested, we can do something to avoid your kids getting breast cancer.”

But really, with CLL, they’ve done a lot of research looking at family cohorts – and, by “they,” I mean not me specifically, but other CLL researchers have done this – and really have not identified anything that’s saying, “Oh, if you have this gene, you’re gonna get CLL, you’re at risk for CLL,” so, we can’t say it’s genetic and there’s one gene it’s pinned on, although it might be genetic based on a constellation of genes or a gene we haven’t identified. So, I think that’s kind of interesting.

The other thing that I’ll say that’s really important when thinking about whether or not your family could be at risk for CLL is that even people that have very what we call unfavorable or high-risk CLL, with something like deletion 17p, other family members that have CLL end up having a pre-CLL condition called monoclonal B lymphocytosis, or 13q CLL, or 11q CLL, so they have a completely different genetic feature for their CLL, even though you can tell they’re in the family as people with CLL.

So, it’s not that the CLL genetic factors we use to predict how you’re gonna do with it are inherited throughout the family, just the risk for getting CLL. I think that’s important to realize.

The other thing is that unlike breast cancer, where you say, “Oh, this is in your family, you should get breast MRIs, you should consider a prophylactic mastectomy,” there’s not a good screening system for CLL, and since when it’s diagnosed, it’s observed, and there’s no known way that we have to prevent it, it’s not like you have to go and get your entire family tested because we don’t have a genetic test, and a screening is not as beneficial as it is in breast cancer where you can get a surgery to prevent yourself from getting the disease. Does that make sense? Okay.

Patricia:                      

Thank you. What are some of the things that you hear from your patients that we haven’t mentioned?

Dr. Rogers:                 

About CLL?

Patricia:

About the way they got it.

Dr. Rogers:

Oh, the way they got it. Hmm. I think the most common things I hear from people that we haven’t mentioned are in either the exposure category, to things that aren’t known to cause CLL, or infections, like, “Oh, I had a really bad bout of influenza,” or “I got pneumonia, and then I got CLL.” I don’t know if these – I don’t know if any infections that are demonstrated to cause CLL.

Sometimes, the white count can go up when people have infections in response to that, because they’re still living immune system cells, so if people get diagnosed when they have an infection because they got their blood drawn or because their white count went up because they were sick, but that’s something common I hear. And so, it’s really hard to say, “Your bout of pneumonia isn’t why you got this,” but it is frequently how people get diagnosed with that, so I hear that sometimes.

Patricia:                      

What are the actual causes of CLL? What do we know?

Dr. Rogers:                 

So, CLL, like most blood cancers is – the way I like to think about it is that your blood cells are one of the most rapidly growing and dividing cells in the body.

You know how over the course of your lifespan, your skin sloughs off, your hair grows, you have to cut it? So, your blood cells divide and turn over within your body, and they’re really quite rapidly dividing, and when cells divide, they replicate their genetic material, and just because it happens so many times over the lifespan, they make mistakes and pick up mutations.

So, many of the mutations they pick up either cause that cell to die, which is fine, or cause your immune system to attack it as abnormal, which is fine. But, in some cases, the mistake or mutation they made when the cells were dividing causes the calls to become broken or mutated in a very specific way that makes them CLL. And, it’s probably not just one mutation; it’s probably a series of them that accumulate to cause CLL.

And so, some of these things are those things we test for in a FISH panel, like 17p is an abnormal genetic change that happened as these cells were dividing over the course of the person’s lifespan, but there’s probably more changes than that that go on, and eventually, the cells become CLL, grow out of control, and have the common features of CLL. So, that’s how I like to think about it.

And then, these questions of “Oh, did pesticides contribute? Did this contribute? Did Agent Orange contribute?” is really just about did those agents cause your cells to break or mutate more, or in a specific way that would make them CLL? So, a lot of things that cause cancers in general, and not just CLL or increased risks for cancers in general, are things that alter, break, or change DNA.

Patricia:

Dr. Rogers, we’ve talked a little bit about symptoms – fatigue, night sweats, swollen lymph nodes. How do you manage the symptoms of CLL?

Dr. Rogers:                 

That’s a good question. So, if people have enough symptoms from CLL that’s really impacting their life significantly, then I suggest they take a CLL treatment.

So, if people have big lymph nodes that are interfering with what they’re doing – like I said, that nice man that was too fatigued to get his mail off his porch – that’s a reason to do a CLL therapy, treat the CLL, and make those symptoms go away. The really difficult ones are when you’re not sure if someone’s fatigue is related to CLL.

So, there’s many people I take care of that are living with chronic levels of fatigue that are not enough to impair their daily activities much, and you’re not sure what it could be related to, so one thing I like to do for things that aren’t clearly severe CLL symptoms is try to figure out what else could be causing it. So, I know myself and many other physicians I work with closely that treat CLL – we think we might diagnose more people with sleep apnea than fatigue related to CLL, and getting your sleep apnea treated is very important. So, it’s always important to do a very thorough look to make sure that these symptoms are from CLL.

And then, in terms of milder fatigue, treating CLL won’t always make that better because people usually live with some chronic side effects from the treatment, and it’s really hard to improve on feeling really good. So, if people have some mild fatigue but feel pretty good in general, it can really only make that worse at some point. And, I find that people themselves find ways to manage. Some people who might be in the actually elderly category like to nap, especially if they can and they’re retired.

Younger people actually shockingly sometimes find moderate exercise helpful. And, I know a lot of people find moderate exercise helpful for other forms of fatigue. So, for people living with mild levels of fatigue, that is definitely – people have those strategies to exercise. A couple people really improved their nutrition and found it helpful. So, sleeping better, focusing on maximizing benefit from things you can do, is good.

In terms of night sweats that people get sometimes that aren’t too severe, usually, they find ways to manage with fans or things like that in the bedroom.

Patricia:                      

These sound like important quality-of-life conversations with your physician.

Dr. Rogers:

Definitely. And, I think any time people have symptoms, it’s always good to talk to definitely your hematologist, especially if you have CLL and you don’t know if it’s CLL-related or it could be, and then, also, your primary care doctor or your general doctor, because sometimes, they’re really good at thinking of what else could be contributing, and occasionally, it’s a back-and-forth before you really determine what’s causing this and if it’s CLL-related, but either way, feeling better is really important.

Patricia:                      

Sure. Let’s talk about symptoms a little bit more. Here are a few things that we’ve heard from CLL patients. Are these fact or fiction? “I shouldn’t travel if I have CLL, since I may get an infection.”’

Dr. Rogers:                 

I think that is fiction. So, I’ve heard this, too, and the way I like to think about it is if you’re expected to live with CLL for a very long time, you had better go out and do the things you want to do. This is not supposed to keep you a prisoner in your house. Now, if you’re in the middle of starting some sort of more intensive treatment for it, or less intensive treatment, but you started last week, that is not a good time to go somewhere where there are no hospitals – in the middle of the Pacific Ocean or to rural Africa. So, you’ve gotta be smart about those things, but you wouldn’t go to rural Africa the week after you had a heart attack, either.

So, I think for people who are doing well, living with CLL, but aren’t needing some sort of – in situation where they need a lot of medical visits and care right now, definitely travel. And then, yes, you can get infections when you travel, but you can get infections in your own neighborhood, and I don’t think that keeping yourself only in your neighborhood or where you live is really gonna help you live any better.

You do have to be kind of smart about it. So, if you’re gonna go somewhere where there’s malaria, go to a travel clinic. Make sure that you take the advice of the travel clinic. If you’re going to Houston, you probably don’t need to do anything special. If you’re going to Central America, then you might wanna go to a travel clinic. And, as you know, most people with CLL are instructed to avoid live vaccines, so you have to tell the travel clinic, “I’m going X place. What are the recommendations? I’m not supposed to get live vaccines.” Sometimes, they can recommend low doses of antibiotics to avoid this. They have practical ways to avoid it – for ticks, if you tuck your pants into your socks.

So, being cautious and taking care not to get infections is good advice, but I don’t think it really helps people to limit their travel. Does that make sense? If someone got a stem cell transplant or something, that’s a different category. I’m talking about most people with CLL.

Patricia:                      

Sure. Well, you mentioned the problem with live vaccines and patients with CLL. Should patients with CLL get a flu shot or vaccines? Because we hear from some patients – they say they shouldn’t.

Dr. Rogers:                 

Yeah. So, because CLL is a cancer of the immune system cells – B lymphocytes – it makes the rest of the immune system function differently than in healthy individuals. So, the benefit that people get from vaccines if they have CLL is actually less, so the – if you get a flu shot, it doesn’t decrease your risk of getting the flu the same way it would for a healthy adult.

However, it’s still a good idea to do because people with CLL live at a higher risk of infection, and the way I view it is you should take every opportunity to decrease your risk for infection because influenza is curable, and if you can decrease your risk even a little bit, I would do it. Now, live vaccines are a bit of a debate because people who are immunocompromised don’t get them. So, live vaccines are a live virus similar to the on that you’re being vaccinated against.

So, examples of live vaccine are the oral typhoid vaccine, the MMR vaccine – I know we’re having measles outbreaks in some parts of the country, so MMR is kind of off the table. There is an intranasal flu vaccine that’s live. It’s very hard to get these days and uncommon to be offered. So, I recommend people get all the vaccines they’re due as long as they’re killed vaccines.

There is now a new shingles vaccine called Shingrix, which is a killed vaccine. I’ve had many patients get that. We’re not sure how well it works in CLL; probably not as well as in healthy adults, but it is safe, so if you get your hands on it – it’s been on shortage – there’s no reason not to get these things. I do think for people that have had really severe vaccine reactions that’s always an individual conversation with your doctor.

Patricia:                      

Yeah, it sounds like it. How about this one? “I’m not experiencing symptoms, so I don’t need treatment.”

Dr. Rogers:                 

That may or may not be true. So, in some cases, especially if people are in monitoring or observation for their CLL, the goal is to start treatment before you get horribly sick, right?

So, in some cases, you’ll see that the changes in the blood really predict that someone’s going to start to be really sick from CLL in the next few months. You might see their platelet count is going down, or their hemoglobin is going down a lot, and so, there’s kind of a level – so, a platelet of 100 and hemoglobin of 10-11 where you think about treatment. It’s not like, “Oh, you hit this level, you need to do treatment tomorrow,” but it’s time to plan a treatment.

Also, that is the one group of CLL patients where a bone marrow biopsy is really needed to make sure that the decrease in blood counts is CLL and not something else. Most of those people feel fine, but if your platelet count is headed down, it’s probably best to start treatment before your platelet count is below 10 and you start having bleeding symptoms. So, there are some people who are recommended to take treatment for CLL because their doctor has noticed that they’re gonna be at risk for developing problems or symptoms that might make them feel much less well.

And so, you wanna start the treatment when you’re still feeling good and before you’re having a lot of bleeding and issues. However, the majority of people who don’t have symptoms don’t need treatment for it. Quite a while ago, they did randomize people with intermediate- or high-risk CLL to either chemotherapy at diagnosis or delayed until they had one of those treatment indications I’ve been talking about, and treating it with chemotherapy just because you’ve diagnosed it did not help people live longer or better. So, if people are not having symptoms and their doctor doesn’t notice a problem, there’s no reason to treat it.

Patricia:                      

We talked a little bit how diet and exercise can help with symptoms, but can they control symptoms? Tricky question.

Dr. Rogers:

I’m not sure. I think that’s really individual. The thing I get asked all the time is, “What diet do I go on to make my CLL go away, or so I never need treatment?” And, there are no evidence-based diets to make your CLL go away. The coffee enema thing doesn’t work. The no-sugar thing – I’m not sure that works.

I do tell my patients to try to eat and behave as if they’re gonna be around a long time because people with CLL usually expect to live many, many years, and heart disease is still killing people in this country, so you can’t stop managing your diabetes, you can’t start eating hamburgers when you have horrible heart disease, so I think you still have to follow a regular, healthy adult diet.

Most people feel better if they eat fruits and vegetables and try to eat a well-balanced adult diet, so I think that helps pretty much everyone, even healthy adults, but I don’t have any specific diet to control CLL symptoms, although I did have one guy that said ever since he’s been eating white toast every morning, all his symptoms are much better. So, if you find something that works for you, it doesn’t matter what it is. If it’s working out for you, you should do it.

Patricia:     

Excellent. What do you think about the future – how do you feel about the future of CLL treatment? What makes you hopeful?

Dr. Rogers:

Oh. Well, I think a couple things. One is for CLL, in many ways, the future is now, and I think it’s only going to get better from here on out.

So, a little less than a year ago, two very large clinical trials were reported that compared our best chemotherapy to oral targeted therapy with an ibrutinib-based regimen for CLL, and the oral targeted therapy was superior in terms of something we call “progression-free survival,” which is how long people were alive without their CLL coming back or causing problems.

So, oral targeted agents, which, in general, not – everyone’s an individual, so until you try a treatment, you don’t know what’s gonna happen, but in general, have fewer side effects than chemotherapy, are better at controlling CLL than chemotherapy, so that’s what I like to put in the category of “the future is now,” and I think it’s only gonna get better. So, we’re improving on our existing oral targeted agents with next-generation drugs that have slightly different side effect profiles.

We are also studying combinations of these drugs, and oral targeted agents, and monoclonal antibodies to try to make treatment shorter, to try to get remissions deeper, to really try to improve the quality of life of people taking these therapies and not just improve how long they live with CLL.

And then, for people that really have the worst of the luck with CLL that have really high-risk findings, that don’t benefit for as long as we’d like from oral targeted therapies, that their CLL comes back after a couple years on those, I think the most exciting thing is really CAR T-cell therapies and those cellular-based therapies that aren’t donor stem cell transplant because I’ve seen people who have really benefited from those who had terrible problems from their CLL before that, and I think that’s gonna improve quality of life for a very specific subset of our CLL patients.

That is still in clinical trials for CLL, but has been in enough of them I can feel very confident that we have an idea about what the side effects are and how well it works. So, that’s really exciting. Can I add just one more thing about this before I…?

Patricia:

Absolutely.

Dr. Rogers:

So, I saw a consult recently for a person that was recommended to start treatment for CLL. His questions for me were, “Should I start treatment now, and what treatment should I take?” This person had never had a treatment before. So, I agreed with his oncologist, who said that he should start treatment now, and his oncologist had talked about several options, but I think with some of the changes in what we’re recommending for CLL, his oncologist had also wanted him to come see me to get a recommendation too, so it was like, “Oh, that’s great. Why don’t you go see Dr. Rogers at Ohio State and see what you should do?”

And so, one of the things he had discussed with the two oncologists in his office closer to his home were, “Oh, we have these – we have ibrutinib, it’s a really outstanding oral targeted agent, but you’ve gotta take it for a really long time, so why don’t you just take chemotherapy, because I think something better will come along?”

And, I was like, “This something better. Literally, this was demonstrated to be better than the chemotherapy. Something better did come along, and it’s this.” So, ibrutinib is better than chemotherapy. I think the idea of “Why don’t we do a less effective treatment because something better might come along?” is not true anymore. We have something better. And, he actually decided to enroll in a randomized phase 3 trial that’s gonna set the new standard of care in CLL, so he was very excited to get treatment as part of a research study. I think he decided that was actually really important to him, and he really liked what the study was.

But, it was just – it was kind of like, “Maybe something better will come along.” I’m like, “Something did.” So, that’s kind of the nice position that many people with CLL are in now. There’s still a lot of work to be done in CLL, but I just get increasingly hopeful as therapies get easier to take and more effective.

Patricia:                      

Fantastic. Thanks so much, Dr. Rogers, for taking the time to join us today.

Dr. Rogers:                 

Thanks for inviting me.

Patricia:

And, thanks to all of our partners. To learn more about CLL and to access tools to help you become a proactive patient, visit www.powerfulpatients.org. That’s powerful patients – with an “s” – dot org. I’m Patricia Murphy. Thanks so much for joining us.

Maintenance Therapy and Continuous Therapy in Myeloma: What’s the Difference?

Maintenance Therapy and Continuous Therapy in Myeloma: What’s the Difference? from Patient Empowerment Network on Vimeo.

Nurse Practitioner, Beth Faiman from the Cleveland Clinic, explains in maintenance therapy versus continuous therapy in multiple myeloma, which can sometimes be confusing.

Beth Faiman is a nurse practitioner in the department of hematologic oncology at Cleveland Clinic. More about this expert here.

See More From The Pro-Active Myeloma Patient Toolkit

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Transcript:

Beth Faiman:

I’d like to define the difference between maintenance therapy and continuous therapy. When patients have a stem cell transplant, they have a pre-therapy, the transplant consolidation is the second step, and then they have a maintenance to maintain that remission. For some people that don’t have a transplant, you can just stay on continuous doses of a therapy that’s very well tolerated. So, maintenance and continuous can sometimes be confused, but it’s — maintenance is lesser doses of something that got you into remission and continuous is just kind of staying on that same dose of tolerated medication.

How Side Effects Can Be Managed in Myeloma

How Side Effects Can Be Managed in Myeloma from Patient Empowerment Network on Vimeo.

Beth Faiman, a nurse practitioner specializing in multiple myeloma, discusses side effects in myeloma and shares what can be done to prevent or reduce these issues in patients.

Beth Faiman is a nurse practitioner in the department of hematologic oncology at Cleveland Clinic. More about this expert here.

See More From The Pro-Active Myeloma Patient Toolkit

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Transcript:

Beth Faiman:

In multiple myeloma, there are numerous side effects, but the most common side effects of treatment are oftentimes the lowering of blood count. So, for example, depending on which type of therapy you’re on, maybe it’s lenalidomide or carfilzomib or some others, you can get some lowering of blood count.

So, those blood counts need to be regularly monitored. Another side effect might be peripheral neuropathy. Now, that’s more common in drugs such as bortezomib or thalidomide.

And so, it’s important to look for that symptom and report if you have any numbness or tingling in your fingers or feet, or dizziness, or anything odd to your healthcare team. Because by adjusting the medication doses, then those patients can actually stay in treatment longer with better control.

Other things with the monoclonal antibodies, some of the newer drugs that are currently available will produce an increased chance of infusion reactions. Now, that’s only at the very beginning of the infusion. So, once patients have received that therapy,  they can feel comfortable to keep taking that with lesser chance of side effects.

And then, finally, many drugs with myeloma have an increased risk of blood clots. So, patients should stay active, keep well-hydrated, and know that they’re at an increased risk. Most providers will recommend a baby aspirin for all patients taking these drugs like lenalidomide, thalidomide, pomalidomide, and carfilzomib. And that’ll lessen their chance of blood clots.

The last thing I’d like to add in is an increased risk of infections. Myeloma is a cancer of the bone marrow plasma cells that are responsible to protect you from getting sick, and unfortunately, they don’t work. Many therapies will further weaken the immune system. So, getting a seasonal influenza vaccine, a pneumonia vaccine every five years, and making sure they take shingles prevention is a very effective way of keeping yourself healthy.

Lab Tests in Myeloma: Key Results to Monitor

Lab Tests in Myeloma: Key Results to Monitor from Patient Empowerment Network on Vimeo.

Nurse practitioner, Beth Faiman, discusses laboratory tests for multiple myeloma, including which results should be monitored closely and how different labs may vary.

Beth Faiman is a nurse practitioner in the department of hematologic oncology at Cleveland Clinic. More about this expert here.

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Transcript:

Beth Faiman:

Laboratory results can be quite anxiety-provoking for some patients and others are pretty easygoing about it. One of the most important things I share with patients whether they come to see me every month, every three months, or sometimes we share care with referral providers is always take ownership of your own care.

You are your best advocate and it’s important to find out what kind of myeloma you have and what they myeloma specialist thinks is important in monitoring your labs. So, for example, there are kappa and lambda light chains, and everybody has a different form of myeloma. Find out the best way that they can monitor their myeloma. Also, key lab results like blood creatinine level, reflect kidney function, hemoglobin carries oxygen and that’s your anemia number. So, finding out those important key lab values and keeping track of them over time can help feel — patients feel empowered often times in their care.

But with that, I always have the caveat, take the results with a grain of salt because there are lab variations within one’s own institution or when you’re going outside of institutions if we partner with care. So, that can be about 20/25 percent lab error each month depending on the test result.

Lab values can fluctuate quite rapidly. So, if I draw a serum creatinine level in the morning, and it might be high indicating kidneys might not be functioning normally, I can encourage them to have some hydration or — and then recheck that lab value and it might go down. The same with the serum-free light chains and M-Spikes.

The lab variation within a single day can be very, very, very diverse. So, it’s important to say, hey gosh, it’s abnormal one day or one hour of the day, but then the next time it can be normal. Or normal for you a well, because there are normal values for one patient that’s abnormal for the other, and vice-versa.

Key Considerations When Choosing Myeloma Treatment: What’s Available?

 

Key Considerations When Choosing Myeloma Treatment: What’s Available? from Patient Empowerment Network on Vimeo.

Beth Faiman, a nurse practitioner specializing in multiple myeloma at the Cleveland Clinic, shares tips for making treatment decisions and discusses the evolution of myeloma therapy in recent years. Need help speaking up? Download the Office Visit Planner and bring it to your next appointment here.

Beth Faiman is a nurse practitioner in the department of hematologic oncology at Cleveland Clinic. More about this expert here.

See More From The Pro-Active Myeloma Patient Toolkit

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Transcript:

Beth Faiman:

There are so many treatment options, and that’s one of the reasons why it’s so important for patients to at least seek an opinion once or twice with a myeloma specialist because treatment changes so rapidly. We have over 20 medications that are approved for the management of myeloma and so the patients need to figure out what’s important for them.

Oftentimes you think, father knows best or doctor knows best. And I hear from time to time that you’re the doctor, you should know what is best for me. But I say, “I understand what might be the best treatment for you in terms of response rate, but we have to balance quality and quantity of life. What are the things that you’re willing and your family’s willing to accept for treatment?”

Do you want to undergo a stem cell transplant which maybe takes you out of commission for a couple of months? Or take an oral therapy every day or an IV therapy intermittently? So, there are oftentimes more than one decision, and this is what we like to practice at my institution. It’s called shared decision making where you have a partnership between the patient and their caregiver, and the healthcare team and we work together to mutually decide what’s best for that patient.

So, sometimes just really trying to get that cure or eliminate the myeloma cell clone as best as possible might not be the right answer now, especially if you’re a single mom or a single dad or caring for a loved one. But maybe that might be a future goal. So, having that conversation is so important. And patients should feel empowered to be able to have that conversation with their healthcare team because if they don’t, then maybe they need to see a different doctor or specialist so they can feel comfortable with them.

I am so excited about all the new classes of drugs that are so — that are currently available. When I started managing myeloma in 1994 or 1995 there was only stem cell transplant and maybe melphalan or Cytoxan, and those drugs were not very effective in controlling the disease. I’m now able to mix and match treatments and give patients different opportunities to meet these milestones. You know, patients were so worried about not being here in two or three years, and now it’s 20 years later. So, forming those relationships and keeping them living healthy longer is so important.

We now have drugs available that can have the possibility of achieving what’s called minimal residual disease or MRD, where we’re eliminating in the bone marrow, the myeloma clone

That was unheard of five years ago even. So now we have the BiTE therapies and CAR T-Cell therapies, and some of the newer drug classes that will hopefully have a functional cure.

People ask me what a cure in myeloma is, and hopefully, we’ll have a real cure. But, living out your normal life span compared to people that don’t have myeloma, and really enjoying life as you do it. So, I always tell patients don’t forget about health maintenance and checking cholesterols, looking for secondary cancers, keep a primary care provider on hand because as a team, we can all work together, to have you live your best life as possible.