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CLL Treatment: Finding the Best Option for YOU

CLL Treatment: Finding the Best Option for YOU from Patient Empowerment Network on Vimeo.

How could genetic testing results impact your chronic lymphocytic leukemia (CLL) treatment options and overall care? Dr. Jennifer Woyach discusses essential molecular testing and provides tools for self-advocacy and decision making.

Dr. Jennifer Woyach is a hematologist-oncologist specializing in chronic lymphocytic leukemia (CLL) at Ohio State’s Comprehensive Cancer Center – James Cancer Hospital & Solove Research Institute. Find out more about this expert here. 

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Transcript:

Katherine:                  

Welcome to Insist CLL, a program focused on empowering chronic lymphocytic leukemia patients to take an active role and insist on better care. Today, we’ll discuss the latest advances in CLL, including the role of genetic testing and how this may affect treatment options. I’m Katherine Banwell, your host for today’s program. Joining me is Dr. Jennifer Woyach. Welcome. Would you please introduce yourself?

Dr. Woyach:               

Sure. My name is Jennifer Woyach. I’m a CLL specialist from the Ohio State University.

Katherine:                  

Thank you. A reminder, this program is not a substitute for seeking medical advice. Please refer to your own healthcare team. Well, Dr. Woyach, let’s start by understanding CLL. Would you briefly walk us through what CLL actually is?

Dr. Woyach:               

Sure. CLL is a cancer of the blood, the lymph nodes, and the bone marrow.

And it happens when a particular type of white blood cell called a B lymphocyte acquires genetic mutations and transforms into a cancer cell. And then, over time, those cancer cells continue to grow and divide. And they can cause symptoms such as enlarged lymph nodes if the cells get stuck in the lymph nodes and continue to grow there. It can cause a high white blood cell count, which usually doesn’t cause any symptoms but is one of the things that we see often in CLL. And then, it can also cause the bone marrow to not be able to produce normal cells because it can get so infiltrated or so full of CLL cells.

And this can cause things like anemia, which is lowering of the red blood cell count and thrombocytopenia, which is lowering of your platelet count.

Katherine:                  

What are the steps involved in reaching a diagnosis?

Dr. Woyach:               

CLL is an interesting disease because it’s one of the only cancers that does not require a biopsy of something for a diagnosis.

So, we can, actually, make the diagnosis of CLL based on the peripheral blood. So, just a blood draw in somebody’s doctor’s office. Usually, CLL is diagnosed in the asymptomatic stage. So, somebody goes to their primary care doctor, has blood drawn usually for another reason, and is found to have a high white blood cell count or sometimes even a fairly normal white blood cell count but a high percentage of lymphocytes. That certain type of cancerous white blood cell. So, the next step in the diagnosis then is something called peripheral blood flow cytometry, which is a specialized test where we look at the markers or antigens on the surface of white blood cells.

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

Things like CD19, CD20, CD23. But they also express a marker called CD5, which is found on normal T lymphocytes but shouldn’t be found on B lymphocytes. And so, this collection of surface markers can make the diagnosis of CLL. Sometimes, we do need to do extra studies like a bone marrow biopsy or a lymph node biopsy. But often times, those are not necessary at the time of diagnosis.

Katherine:                  

When you meet with patients, Dr. Woyach, what are some common misconceptions that you hear about?

Dr. Woyach:               

I think the biggest thing that I hear, and grant it I see a lot of patients after they’ve been diagnosed by someone, gone to see an oncologist and then, come to me after, but one of the common things that I hear is that somebody has told them along the way that they have the good type of cancer, which I think is not a very helpful thing to hear as a patient because, of course, no cancer is a good type of cancer.

I think it’s important to note that CLL is one that has a lot of treatment options and usually extended survival. But I think that’s one of the most common misconceptions that I hear.

Katherine:                  

Before we get deeper into our conversation about genetics, there are a few terms that patients are often confused by. As a primer, I thought we could start by defining some of these terms. First, what is genetic or molecular testing?

Dr. Woyach:               

So, all cancer cells will have a collection of mutations or abnormalities in the DNA that either make the cell a cancer cell or make it behave in a certain way. And so, these mutations are referred to as the genetic abnormalities of the CLL cells. So, when we talk about genetic testing in CLL, we use it to mean a number of things. We can use it to look specifically for types of mutations so types of genetic abnormalities.

We also sometimes use that as a kind of catch all term like genetic or molecular testing also to refer to looking at changes in the chromosomes inside of a CLL cell. That’s also called cytogenetic testing. And then, we also use a number of tests in CLL where we look at specific, not necessarily abnormalities, but just changes in the cell that can indicate a certain type of behavior.

Katherine:                  

How is this different from genomic testing?

Dr. Woyach:               

So, genetic and genomic testing, I think, are usually used interchangeably. But sometimes, we use them in different contexts but they really mean the same thing in this case.

Katherine:                  

Okay. And what is a chromosome change?

Dr. Woyach:               

So, as you might remember from biology class maybe a long time ago, as it was for me, inside a cell, so a normal cell or a cancer cell, you have the nucleus, which holds the DNA.

And the DNA is organized into chromosomes. And so, when a cell goes through division, it takes those chromosomes, copies them and then, breaks them apart into two different cells. So, changes can happen in the level of the DNA itself. So, a mutation where one base is changed to something different. So, that would be just like a single nucleotide change. And that’s something you’re not going to see as a change to a chromosome. Another thing that can happen in CLL and in other cancers, too, is that during that process of cell division, an entire chromosome could be duplicated. It could be absent.

More commonly, parts of chromosomes can change. This is all because cancer cells just do a very poor job of editing their division.

An in normal cells, there are multiple steps along the way from the process of copying the genes to copying the chromosomes to doing the division. And every step along the way, if something happens incorrectly, which happens a lot, the cell usually just dies. But a cancer cell is not going to do that because it has so many signals that keep telling it to stay alive that it can tolerate a lot of different abnormalities. And so, you end up with cells that are just very different from what you would see normally.

Katherine:                  

All right. Well, that’s a great way for us to start. Let’s go into the discussion of the relationship between testing and CLL. How is testing administered?

Dr. Woyach:               

So, almost all testing, in terms of molecular genomic testing in CLL, can be done on a blood sample. So, that’s one important thing.

The CLL guidelines recommend that testing for certain prognostic factors be done before the administration of therapy. So, at the very least, before somebody starts treatment, they should have these tests performed. In my practice and I think most CLL specialists find it really helpful to do these tests, not necessarily just at the time of treatment but really at the time of diagnosis or the time we first see the patient because CLL is a very heterogenous disease, which means that it behaves very differently in different people. So, there are some people that are diagnosed and will go 10 or 20 years before they need any treatment.

And many don’t need treatment at all. Whereas other people are very likely to need treatment within the first few years after diagnosis. Some of the genetic tests that we do can help counsel patients on where they’re likely to fall in that spectrum.

And so, I think that’s helpful for people to know early on in the disease course. But really, the tests can be performed at any time before treatment

Katherine:                  

Have there been advances in testing?

Dr. Woyach:               

Absolutely. I think in every cancer, we’ve learned so much more about the biology of the disease, specific mutations that cause specific behaviors of cells, and really much more in CLL about the common genetic changes and what those means to response to therapy.

Katherine:                  

The goal of this program, Dr. Woyach, is to provide the confidence and tools for patients to advocate for the essential tests to get the best care personalized to them. Are there specific tests that patients should make sure they have?

Dr. Woyach:               

Yeah. In CLL, I would say there are three that are very, very important before starting treatment. The first is something called the IGHV mutational status.

What that is defined as is the changes in the variable region of the immunoglobulin heavy chain. That’s a big mouthful that doesn’t mean a lot to most people. So, I’ll give you just a little background on what that really means biologically and then, what that means clinically. So, every B lymphocyte, so a normal B lymphocyte and a CLL cell, has receptors on the surface of the cell that allow it to interact with the environment. And in a normal B lymphocyte, this is really important for the immune system. So, bacteria, virus, something is in the body and the B cell surface receptor is going to be able to recognize that that’s not supposed to be there and then, do something about it.

In CLL, the surface receptors don’t do a lot of interacting with the outside environment but they’re still present there. And in a normal B cell development, the B cells are initially formed in the bone marrow.

And at the time that they’re formed, every one of those receptors is exactly the same. So, we can do DNA sequencing on those receptors and you’ll see that every one is identical. So, during a normal development of a B cell, it undergoes this process that’s called somatic hypermutation, which is where those receptors mutate or change. And that’s important because then, they can recognize different things. And so, you end up with this whole repertoire of thousands or millions of B cells that all are a little bit different and can recognize something different.

So, CLL cells, they’re all clonally related to each other. They’re all going to have the same receptor on their surface. And about 60% of the time that receptor is different than the newly born B cells. And so, this is probably a little bit more simplistic than it actually is. But the way we think about that is that those B cells or those CLL cells, which we call mutated because they underwent that mutational process, we think that that means that they come from a more mature initiating cell.

And they tend to be less aggressive, more slow growing. The other 40% of patients, if you look at the receptor on their surface, it’s exactly the same as the new B cells in the bone marrow. And we call those IGHV unmutated because they haven’t done that mutational process. And they behave very differently. So, in mutated CLL, only about half of people will ever need therapy in their lives. An average time from diagnosis to first treatment is about 10 years. In contrast to those patients who have unmutated IGHV, basically, all of those people will need therapy at some point in their lives. And average time from diagnosis to first treatment is about three years.

So, you can see how it really breaks people up into two very different categories of disease.

So, that’s the first test and one that’s really important. That’s also one that doesn’t change during the course of the disease. So, if somebody is diagnosed with mutated CLL, it’s always mutated. So, the next marker that’s important is, actually, chromosome changes. So, we know that there are a few different recurrent chromosome abnormalities in CLL that are common and important prognostically. So, one of these is a deletion of part of chromosome 13. It’s called a 13q deletion. It indicates, again, very slow growing CLL. Patients how have normal chromosomes also are very good disease biology.

Some people have an extra copy of chromosome 12. That’s called trisomy 12 and that’s an intermediate marker. And then, there are two markers that are associated with a little bit more aggressive CLL. One is a deletion of proto chromosome 11. That’s called an 11q deletion.

And the other one is a deletion of proto chromosome 17 called a 17p deletion. These are all abnormalities that are important to test for. And the way that we test for these is something called FISH testing. And FISH stands for fluorescence in situ hybridization. And it’s a way to use an antibody to look for specific abnormalities in the CLL cells. So, that’s important. And another thing that can be done at specialized centers is something called stimulated cytogenetics. So, I mentioned to you with FISH testing, we’re looking for specific abnormalities with antibodies. But the things that we don’t test for we’re not going to see.

So, if they have a chromosome change that we don’t have an antibody looking at, we’ll never detect it. And we know that patients with CLL who have what’s called a complex karyotype, which is three or more chromosome abnormalities, they also have more aggressive disease.

So, like I said, at specialized centers, we can do what’s called a stimulated karyotype, which is where we look at all of the chromosomes. So, that’s FISH testing and karyotype. And then, the last thing is, actually, doing DNA sequencing for a specific mutation called a TP53 mutation. And TP53 is an important tumor suppressor protein. And it is mutated quite commonly in CLL. About eight to ten percent of patients at the time of first treatment and, actually, up to about forty percent of people later on in the course of the disease. Most of the time, we see TP53 mutations occur at the same time as 17p deletions. About 80% of the time, those occur together but they can occur on their own.

So, that’s the third test that’s often helpful, especially prior to starting treatment.

Katherine:                  

Do patients need to be retested over time?

Dr. Woyach:               

Yeah. So, for the TP53 mutation and for FISH, it’s important to test for those before each line of therapy. Because those are so important in indicating disease biology and, specifically, with the 17p deletion and TP53 mutation, those indicate patients that are likely to not have as good of a response to treatment. It’s always important to check for those prior to therapy.

Katherine:                  

We have a patient question. I have 17p deletion. Should I be worried?

Dr. Woyach:               

So, 17p deletion is usually associated with more aggressive disease biology almost always associated with that unmutated IGHV. The reason I bring that up is there are a very small subset of patients who have 17p deletion and mutated IGHV who, actually, have pretty indolent or slow growing disease.

People who don’t, which is the majority of them with 17p deletion, do have a shortened time to treatment and shortened survival with most of our current therapies. There have been a lot of advances though in the treatment of 17p deleted CLL. And may of our newer therapies can very much prolong the remission time in the lives of patients with 17p deletion.

Katherine:                  

Dr. Woyach, how do these chromosomal changes affect disease progression and prognosis?

Dr. Woyach:               

So, the markers that are associated with more aggressive disease biology usually are going to be associated with people that need treatment within the first few years after diagnosis, especially those people who have 17p deletion, 11q deletion, unmutated IGHV.

Katherine:                  

What exactly are prognostic factors? Would you define that?

Dr. Woyach:               

Sure. Prognostic factors, and I mentioned three of them, the IGHV, FISH, and the TP53 mutation, are ones that have been studied extensively and shown that the presence of this marker or some change in this marker is associated with a change in the biology of the disease or in the response to therapy.

Katherine:                  

How does the identification of these changes or mutations affect treatment options?

Dr. Woyach:               

Well, right now, we’re lucky in CLL because we have a lot of treatment options. I would say the most important changes when we’re talking about somebody with CLL that is about to start their first treatment is the decision of whether chemotherapy is ever appropriate. So, almost everybody with CLL now is treated exclusively with targeted therapies.

So, nonchemotherapeutic options. There are some people who are young, and in CLL terms that means under the age of 65, who have mutated IGHV and who otherwise have good genetic list disease. So, normal chromosomes of the 13q deletion, no TP53 mutation. That small subset of patients, actually, has the potential to be cured with a specific type of chemotherapy. It’s called FCR or fludarabine, cyclophosphamide, rituximab. So, for those young, healthy patients, it’s really important to know those risk factors to know if they are in that group that has that potential for cure.

The converse to that is if patients don’t fall in that group, they probably shouldn’t receive chemotherapy as their first treatment because it’s not as effective as our other therapies.

Katherine:                  

Yeah. It makes sense.

Dr. Woyach:               

And then, even in the future with first and other treatments with novel therapies, we know that patients with 17p deletion and TP53 mutation tend to have a shorter response time. And so, what I use that for in my practice is I know that those are people that I really have to be sure that we’re following them closely, taking any signs of progression seriously, and always have a back up plan for what we’re going to do if this treatment doesn’t work.

Katherine:                  

We have another question from a patient who wants to know if their children will inherit CLL. Is there any link between inherited mutations and CLL?

Dr. Woyach:               

That’s a very, very common and really important question. I would say of the hematologic cancers, CLL is one with higher linkage in families, which means that people with CLL are more likely to have another family member with CLL though it’s still not very common.

And it’s very different from breast cancer or the solid tumors where we know that these specific mutations indicate families that are going to have risk of disease. There has actually been a lot of study over the years of families that tend to have multiple people with CLL. Unfortunately, there really have not been genes identified that are the reason for those family linkages. I think there has been only one family that I know of where they’ve actually found a gene that was likely the cause of multiple family members’ illnesses. So, yeah, there is no indication to test family members.

I tell people do not worry that you’re going to pass this to your children or your grandchildren. CLL is not something that we should be using as like a marker of whether you should have kids or should have anything like that.

So, maybe a little more likely in family members but not enough to really be worried about that.

Katherine:                  

What are the differences or difference between inherited and acquired genetic mutations?

Dr. Woyach:               

So, inherited mutations are those that you get from your parents. And there are lots of inherited mutations that, actually, can predispose to cancer. Specifically, I mentioned the TP53 mutation and CLL cells. Well, there are also people who inherit a TP53  mutation have risk factors for multiple cancers. And CLL, specifically, every mutation that we talk about is an acquired mutation. So, that’s also known as a somatic mutation. So, they’re mutations in the cancer cells. But if you did DNA sequencing of the normal cells, they would not be there.

Katherine:                  

We have a question from a patient. If I have FCR, does that rule out me using a targeted therapy later on?

Dr. Woyach:               

Absolutely not. And, actually, all of the studies of the targeted therapies, all of the early studies were done in people who previously had had chemotherapy. Most of them had received FCR. So, certainly, receiving chemotherapy doesn’t mean that you can’t get a targeted therapy later on.

Katherine:                  

What are other factors that are important to consider when deciding on a treatment route?

Dr. Woyach:               

So, besides the genetic factors we talked about, other things are age and very closely related to age is fitness status. So, how active is somebody? How able are they to do all of their normal activities? Are there other health problems that we need to be concerned about when thinking of treatment?

As well, certain medications can influence treatment choices, specifically, with oral therapies where there might be drug interactions. And then, also a lot of the decision of frontline therapy is patient preference right now. So, do people prefer to have a time limited therapy? Do they prefer to have an indefinite therapy? Do they prefer an all p.o. regimen or a mix of p.o. and IV? So, there are definitely a lot of considerations when thinking about frontline treatment.

Katherine:                  

Dr. Woyach, what do you feel is the patient’s role in this conversation about treatment approaches?

Dr. Woyach:               

I think that, obviously, the patient is the most important part of the talk of treatment indications. Like I mentioned, sometimes we have the discussion of chemotherapy versus a targeted therapy. More often, the discussion is we have three approved frontline CLL therapies right now. We have two BTK inhibitors or Bruton’s tyrosine kinase inhibitors, ibrutinib, acalabrutinib.

And then, we have a BCL-2, venetoclax, that’s given in combination with an antibody called obinutuzumab. These are very different treatments in terms of side effects, [inaudible] [00:28:13] how they’re administered, how often they’re administered, just as an example. The BTK inhibitors are pills. And they’re meant to be given indefinitely. So, you start them with plans that you’re not going to stop them, unless the patient doesn’t tolerate them or they stop working. And so, with that type of regimen, you have the kind of burden of being on treatment for a long period of time.

But on the flipside, it’s very easy to start treatment. So, if you decide you want a BTK inhibitor, I write a prescription for it, it comes to your house, you start it. I usually see patients monthly for the first six months and then, we go to every three months. It’s very easy to start treatment.

The other type of treatment, the Venetoclax plus with the obinutuzumab regimen, that’s the BCL-2 inhibitor with an antibody, it’s a finite therapy. So, people are treated for a year and then, they go off treatment. The flipside of that is they’re a lot more time intensive in the beginning. So, you have the IV therapy with the obinutuzumab. Venetoclax you, actually, have to ramp up the dose so patients have to come in weekly for the first five weeks and they have to come in monthly for their infusions. So, it’s much more time intensive upfront but then, you get to stop treatment. And so, those are considerations that I can’t answer for somebody.

I don’t know which one people would prefer and people prefer different things. So, we spend a lot of time talking about all of the different scenarios and what’s going to make the therapy work best for the patient.

Katherine:                  

How can patients stay informed about CLL?

Dr. Woyach:               

There is a lot of good information about CLL that’s available online through The Leukemia & Lymphoma Society.

They have a number of resources for lots of different cancers, including CLL. There are a number of different patient centered websites. One is called the CLL Society. There are others that are heavily moderated, provide a lot of good information, and tend to stay on topic with CLL current developments and don’t get into the weeds too much I would say.

Katherine:                  

If there are side effects, what would some of the side effects be for these targeted therapies?

Dr. Woyach:               

So, it depends on the drug. So, BTK inhibitors, specifically, ibrutinib can cause some joint and muscle pain, some rashes, diarrhea, heart burn. Those are things that tend to, if they’re going to happen, usually happen earlier on in treatment and tend to get better over time. It can also cause high blood pressure. It can cause an abnormal heart rhythm called atrial fibrillation.

So, those are things we watch out for with ibrutinib. Acalabrutinib really has all of the same side effects but for many of them, they don’t occur as often. And then, the tradeoff there is ibrutinib is given once a day and acalabrutinib is given twice a day. With venetoclax plus obinutuzumab with that regimen, you get a lot more hematologic toxicity. So, you see more lowering of the good white blood cell count, which is, obviously, a risk for infections. That regimen comes with a risk of something called tumor lysis syndrome, which is where the cells can break down too quickly and cause damage to the kidneys, damage to the heart.

It can also cause some GI disturbance like some diarrhea, nausea, abdominal pain, things like that. I see there are a lot of side effects. And, of course, when I’m talking to a patient about treatment, we go over them in more detail than that. But I think the important thing is with all of these therapies, we do have ways to manage these side effects.

One thing I think is important for patients to remember is your doctor doesn’t know you’re having side effects unless you tell them. So, we know that people have these side effects. But if you don’t tell us that you’re having diarrhea or heart burn or things like that, we can’t help with it. And we have a lot of medicines that can help these things.

Katherine:                  

That’s a good point. Are there emerging treatments patients should know about?

Dr. Woyach:               

Yeah. There are a lot of really exciting things going on in CLL right now. And CLL is a disease that has been completely transformed in the last five to ten years and is poised to do so again. So, I mentioned these therapies that we use for frontline treatment and there are clinical trials now combining them together. So, these agents work so well on their own. Are they going to be even better if we add them together?

There are also newer target therapies, different targets that we are finding increasingly important in CLL, as well as a modality called CAR-T cells, which most people have heard of where we take patients’ own T cells, modify them in the lab and then, give them back with a goal of getting those cells engineered to kill CLL cells.

These are all things that are not ready for prime time in CLL yet but are available in clinical trials. And I think one other thing I’d really like to put a plug in for is clinical trials in CLL because right now, we’re at a point where our therapies are really very good. But if people just do those treatments, we are never going to figure out which one is the best or figure out, for specific types of patients, which treatment is the best. And so, I advocate that any of my patients that are eligible for clinical trials should consider them because that’s how we make progress in the disease from an altruistic sense.

That’s how we make things better for everybody. That’s one way a patient can think about it. But more personally than that, being in a clinical trial gives somebody the opportunity to get a treatment that they otherwise wouldn’t get that might be better than our standard of care therapies.

Katherine:                  

Dr. Woyach, as a researcher in the field, why are you hopeful?

Dr. Woyach:               

I am so hopeful in CLL because there is so much that we’re learning every day about the biology of the disease, about specific mutations and other genetic factors that are important and really can be targeted by new drugs. Paralleling our understanding of the disease, there also are many more techniques to make these targeted therapies that kill cancer cells selectively while sparing normal cells and making our drugs even more tolerable.

And I think both the targeted therapies like this and the potential of combining them, figuring out sequences that are best but then, also these newer modalities where we, actually, get the immune system involved like the CAR-T cells. They’re making CAR NK cells now. And just lots of other strategies that could be used together with targeted therapies to, hopefully, cure the disease.

Katherine:                  

Thank you for taking the time to join us today and sharing all of this information with the patients. We appreciate it.

Dr. Woyach:               

Of course. It’s my pleasure.

Katherine:                  

Please take a moment to fill out our survey. It helps us as we plan upcoming programs. And thank you to all of our partners. To learn more about CLL and to access tools to help you become a proactive patient, visit Powerfulpatients.org. I’m Katherine Banwell.

Which CLL Treatment Approach Could be Right for You?

Which CLL Treatment Approach Could be Right for You? from Patient Empowerment Network on Vimeo.

Which CLL treatment approach might be best for your individual disease? This animated video walks through important considerations that help guide treatment decisions, including genetic testing results, lifestyle factors and patient preference. 

See More From The Pro-Active CLL Patient Toolkit


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CLL Treatment Decisions: What Path is Best for YOU?

 How to Be A Partner in Your CLL Care  Key CLL Treatment Decision-Making Factors

Transcript:

Hi, I’m Christy. I’m a nurse practitioner and I specialize in chronic lymphocytic leukemia, or CLL. With a variety of available treatment options, CLL patients often wonder which approach might be best for their individual disease.

Before we walk through the information that goes into choosing a treatment approach, I want to remind you that this video is intended to help educate CLL patients and their loved ones and shouldn’t be a replacement for advice from your doctor.

So, how is a treatment path determined?

CLL physicians will typically consider several key factors to help guide the decision.

When many CLL patients are first diagnosed, their medical team may use an approach called “watch and wait” or “active surveillance.” This means that treatment won’t begin immediately. Their healthcare team will monitor their CLL via in-person visits and lab testing. And, some patients may never even need treatment, depending on their individual situation.

But, if bloodwork indicates advanced disease, enlarged, bothersome lymph nodes develop, or, if symptoms like fatigue and night sweats are negatively affecting a patient’s daily life, then it may be time to treat the CLL.

Physicians typically consider a patient’s age, overall health, and existing conditions before they suggest an approach. There are also several tests on the CLL cells that may help guide treatment decisions.

Physicians use immune globulin heavy chain gene, also known as IGHV, mutational analysis to determine whether a patient is IGHV mutated or unmutated.

In IGHV mutation analysis testing, being “mutated” is a favorable finding. 

If a patient’s IGHV status is mutated, and, depending on other factors such as age and overall health, the physician may recommend a treatment called FCR. FCR stands for the drugs used in this approach, which are two chemotherapy drugs combined with a targeted treatment that is a monoclonal antibody.  

However, it is important to realize that due to side effects and other risks, chemotherapy is not for everybody. Non-chemotherapy treatments work very well for IGHV mutated patients as well as unmutated patients.

If a patient has unmutated IGHV, then a targeted treatment or a clinical trial might be more effective.

Molecular testing, also known as genetic testing, can identify specific genes, proteins, chromosome changes, and other factors unique to your CLL.

The results can provide your healthcare team with information related to prognosis, risk and which therapy may be most effective in treating your disease.  

One of the most widely used tests is call a FISH test and it looks for specific changes in the chromosomes of your CLL cells.  These specific changes can help understand how well certain treatments are likely to work for you. 

For example, patients with the chromosome abnormality “17p deletion” may have higher-risk disease and will not respond well to chemotherapies such as FCR. An oral targeted treatment approach or a clinical trial will be more effective in patients with 17p deletion.

There are several types of targeted treatments that are currently approved to treat CLL including:

  • Monoclonal Antibodies, which work by targeting specific proteins on cancer cells.
  • And, Kinase Inhibitors, which work by blocking proteins that tell the cancer cell to grow and survive.
  • A combination of treatment approaches may also be considered.

Before you start any treatment, it’s essential to ask your doctor if you have had relevant CLL genetic testing, including FISH testing, and what the results could mean for you.

Finally, one of the most important factors that your healthcare team will consider is YOUR treatment goals. 

It’s very important to consider a treatment’s course and potential side effects.

With the many options available today to treat CLL, you will be able to get effective treatment. How your treatment choice affects your other health conditions and your lifestyle is essential.

Remember, you are a partner in your care and have an active voice in finding the best treatment for you.

When treatment is discussed may be a good time to consider a second opinion or a consult with a specialist.  If you don’t feel supported or an active member of your team, then it is always best to get another opinion if you are able.

So, how can you put this information to work for you and help improve your care?

  • Talk to your physician about what you’ve learned.
  • Ask about testing mentioned in this video and whether you need to be retested over time.
  • Discuss clinical trials with your physician.
  • Visit credible resources to stay up to date on CLL information.

Visit powerfulpatients.org/cll to learn more about CLL.

Lung Cancer Treatment: What Is Immunotherapy?

Lung Cancer Treatment: What Is Immunotherapy? from Patient Empowerment Network on Vimeo.

Dr. Erin Schenk, a lung cancer specialist, provides an in-depth explanation of what immunotherapy is, and its role in treating lung cancer.

Dr. Erin Schenk is an assistant professor in the division of medical oncology at the University of Colorado Anschutz Medical Center. Learn more about Dr. Schenk and her lung cancer research here.

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Transcript:

Dr. Erin Schenk:

Immunotherapies are powerful new medicines that we available to us as medical oncologists and especially within patients with lung cancer. Immunotherapies are medicines that help to activate your body’s own defenses to go seek out and kill the cancer cells.

So, immunotherapies prevent stop signs on the cancer cells.

What happens is that as the cancer cells grow and as they become more resistant to your body’s natural defenses, it puts up certain stop signs. And these stop signs prevent your body’s immune system from attacking them. Immunotherapies, basically, it cuts off that stop sign so that your immune cells can go and attack the cancer cells.

Immunotherapies play a role in the treatment of many lung cancer patients, nearly all. So, immunotherapy has recently found a role in curative-intent therapy meaning we give these treatments to you to try and cure you of your cancer completely. And that’s in patients who have advanced lung cancer that they can’t surgically resect, or it’s not safe or feasible to cut out, but it hasn’t spread to anywhere else in the body.

So, often, those patients receive chemotherapy and radiation together, and then they receive immunotherapy for a year. So, that’s one set of patients we treat with immunotherapy. And then most other patients with lung cancers especially metastatic lung cancer or cancer that’s spread elsewhere in the body, immunotherapy plays a role in treatment regardless of what type of lung cancer that you have with a couple exceptions which I’ll get to.

So, first, if patients have small cell lung cancer that has spread in other parts of the body, immunotherapy’s an important part of the initial treatment regimen combined with chemotherapy. That’s one of the first advances in decades for patients with small-cell lung cancer. The other situation where we use immunotherapy in metastatic disease is with non-small cell lung cancer. And here we have data and studies to support the use of immunotherapy either alone or in combination with chemotherapy medicines.

And the determinate, there’s a number of factors we use to help determine whether a patient can get immunotherapy alone or immunotherapy in combination with chemotherapy, that’s based on PD-L1 status. So, that’s the immunotherapy marker that we look for on cancer cells. If the PD-L1 status is high enough on the cancer cells, we can discuss with our patients using immunotherapy alone.

If that PD-L1 marker on the cancer cells is not high, then we can use immunotherapy plus chemotherapy in our patients. One area where we’re still not quite sure how to best use immunotherapy are in patients with driver mutations or some of these mutations that we look for with special molecular testing like EGFR, ALK fusions, ROS1 fusions.

What we’ve been learning over time is that immunotherapy alone does not appear to help patients do better for longer. We’ve also been learning through clinical trials that immunotherapy combined with TKIs which is the targeted therapy patients receive if they have one of these driver mutations, that does not appear to be effective or safe from some of these early clinical trials.

There’s some debate right now amongst my national/international colleagues as to whether or not giving immunotherapy plus chemotherapy is the right choice for these patients after TKIs or targeted therapies stop working. It’s really up to the discussions that you have with your doctor and whether or not they think immunotherapy and chemotherapy could be right in that situation.

Ask Your Doctor About These Essential Genetic Tests for CLL

Ask Your Doctor About These Essential Genetic Tests for CLL from Patient Empowerment Network on Vimeo.

Genetic testing results can impact a chronic lymphocytic leukemia (CLL) patient’s treatment options and provide a deeper understanding into their disease. Dr. Steven Coutre, a CLL specialist, reviews essential tests and explains their role in CLL care.

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

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Transcript:

Dr. Steven Coutre:

In terms of testing for CLL, additional testing, of course, diagnostically, it’s generally not a challenge. It’s very straight-forward. A test that we call Flow Cytometry on a blood sample is usually sufficient to establish the diagnosis. Very, very uncommonly would a bone marrow exam be needed, for example. And in routine practice, also, we don’t necessarily give CT scans to establish a diagnosis or even to, as people say, stage the disease. It really isn’t necessary in most cases.

However, we do have a staging system that correlates with the extent of the disease and that’s simply based on our exam and blood counts, but people also want more information. They wanna know how they’re gonna do, specifically. So, we can add additional tests, genetic testing as people often call it, that can further subdivide individuals into groups that give you additional information on how you might do, meaning if you’re without symptoms, and an observation is recommended, you wanna know, “Well, how long is it gonna be before I need treatment?” Although our staging system gives that information, we can refine that further.

One test is the so-called FISH test, which looks at specific chromosome abnormalities, and the second test that’s generally used is called the IGHV Mutation Assay. That’s really looking at what’s called the mutational status of your immunoglobulin genes. So, it’s really those two broad categories that are most relevant.

Now, we don’t necessarily advocate doing that testing on everyone at the time of diagnosis. Certainly, not everyone who is without symptoms, where we’ve already decided that treatment is not indicated. So, as you can imagine, you can do that testing. You might come up with a profile that’s less favorable. And then, instead of the watch and wait approach, or as folks like to call it, “watch and worry approach,” you worry even more. But then, of course, if you have a favorable profile, then you’re happier. You’re more pleased.

However, we don’t do anything differently regardless of what those tests show, at least at current state. Compared to a decision that’s already been made about treat or not treat. We do, however, strongly advocate getting that testing at the time of treatment, and sometimes, repeating some of the testing with subsequent treatment, when you require treatment, say, a second time, in some cases. So, very important to have a discussion about these tests and what information you will get from them.

Well, we’ll often see patients who are coming for another opinion about their disease. Perhaps they’ve been recently diagnosed, and they have been advised for observation, so, it’s, of course, natural to ask whether that’s a reasonable approach. And in that context, other testing often comes up in the conversation. Perhaps they had the testing done, the FISH, and the mutational testing, and they wanna know what it means, or actually we see some results that have been obtained and we ask them about it. And there’s very often confusion, or really lack of information about what they mean.

So, we really try to discuss that issue. That issue of testing with each and every patient, whether or not they’ve had it done, really trying to let them know what it means. That way they’re fully informed, and in some cases, people feel very strongly that they would like to have it done, even through they realize that we’re not gonna act on it at that point. So, I think pretty much for all patients, it should be part of the initial discussion.

Again, in terms of genetic testing are these tests that I discussed. It’s important to understand what information they give you so you understand why your physician may be making a distinction between one therapy versus another. It is very, very important to get that testing, if somebody is talking about using chemotherapy, for example, hopefully. That’s quite uncommon. But with our newer agents, we know that they work broadly despite those other features.

Nevertheless, I think it’s important for a patient to at least expect the discussion about these tests. We’re not asking you to go to your physician and ask that they be done in all cases, but really understand perhaps why your physician recommended that they not be done at that particular time. 

Advocate for These CLL Genetic Tests

Advocate for These CLL Genetic Tests from Patient Empowerment Network on Vimeo.

Genetic testing results can influence a chronic lymphocytic leukemia (CLL) patient’s treatment options and provide a more in-depth understanding into their disease. Dr. Philip Thompson, a CLL specialist, reviews key tests that CLL patients should advocate for.

Dr. Phillip Thompson is an Assistant Professor in Medicine in the Department of Leukemia at The University of Texas MD Anderson Cancer Center. Learn more about this expert here.

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Transcript:

Dr. Philip Thompson:

I would say that I see a lot of patients that have previously seen an oncologist closer to home and then traveled to MD Anderson for a second opinion. And so, I can say that over the last three or four years, there’s definitely a significant change in the awareness of physicians in general about doing genetic testing for CLL.

So, in particular, almost everybody will get a FISH test, which I didn’t always see three or four years ago. And more patients are now having IGHV mutation status analysis done. The thing that I see that is very rarely done, though, is what we call next-generation sequencing, or NGS, that looks for mutations in individual genes, and most importantly, in the TP-53 gene that I mentioned.

So, I would – and the other thing that often isn’t done is what we call a carrier tag, which is a routine analysis of the chromosomes of the CLL cells. And it requires some special techniques for the lab to get it to work in CLL. But that can actually provide additional information compared to just FISH.

So, I would suggest to a patient, particularly if they’re gonna do a bone marrow biopsy on you, which is an invasive procedure, that you really try to get some clarity around what tests are going to be ordered on that beforehand. And if you’ve just been diagnosed and you’ve got early-stage CLL, you can make an argument about how many of these tests are absolutely necessary to start with. Because the biggest utility in these tests is in determining what type of treatment you’re going to have.

If you’re not immediately going to have treatment, they don’t necessarily change what your oncologist is going to do. They’re going to monitor you over time and see if your disease is getting worse or not. But I still think they’re useful to have the – a lot of them are useful, particularly the IGHV mutation status and FISH are useful to have at initial diagnosis. Because they give you a really good idea of what the biology of this disease is – this patient’s disease is like and how quickly they’re likely to progress, and that may change how frequently you monitor the patient.

But anyway, I would say it’s important to ask them what genetic testing you are gonna get. And that you ask – have an understanding of what can be ordered.

 And in particular, if you’re going to get treatment, you must ask for TP-53 sequencing, FISH for 17-P deletion, and IGHV mutation status because those three things are essential to determine the optimal treatment that you have. And you shouldn’t feel shy about asking, are those things going to be done.   

What Do Genetic Tests Reveal About My CLL Treatment Options?

What Do Genetic Tests Reveal About My CLL Treatment Options? from Patient Empowerment Network on Vimeo.

 
Genetic testing results can influence a chronic lymphocytic leukemia (CLL) patient’s treatment options and provide a more in-depth understanding into their disease. Dr. Phillip Thompson, a CLL specialist, reviews three important testing results that can impact treatment timing and approaches.
 
Dr. Phillip Thompson is an Assistant Professor in Medicine in the Department of Leukemia at The University of Texas MD Anderson Cancer Center. Learn more about this expert here.

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Transcript:

Dr. Philip Thompson:

So, there are three main things we look at before initiating treatment in a patient.

One is what we call the IGHV mutational status of the patient. And this basically splits people into types of CLL. So-called mutated or unmutated. And this is a relatively complex concept. Basically, what happens in normal B-lymphocyte development, so B-lymphocytes are part of your immune system. Their job is they have a probe on the surface of the cell that looks for invading microorganisms. And when they find an invader, this probe binds to the organism. And then the cell actually undergoes, as part of its normal development, a process of mutation so that it makes the best possible antibody to fight that infection. So that’s a normal process that the B-lymphocyte undergoes when fighting infections.

So, CLL can arise from what we call a mature antigen-experienced mutated B-cell, or it can arise from a naive B-cell that has never gone through that process, in which case, it will have an unmutated IGHV. Now, it’s kind of counterintuitive, but the patients with a mutated IGHV generally have better outcomes. That type of CLL is less proliferative, it doesn’t grow as fast, and it also tends to respond better to certain types of treatment. Particularly, it responds better to chemotherapy than patients with unmutated IGHV.

However, the difference between those two is less important if you’re getting some of the newer therapies. Particularly, it seems like if you receive BTK inhibitors, it doesn’t really matter if you have mutated or unmutated IGHV, patients are responding very well. But I like to know whether they have a mutated or unmutated IGHV because it’s helpful for giving the patient an expectation of how their disease is likely to behave biologically.

But also, if they have a mutated they may be a candidate for chemotherapy-based treatment. Whereas if they have unmutated IGHV, I don’t use chemotherapy for those patients.

 

The second thing is a test called FISH. And FISH looks for chromosome abnormalities. So, we have 46 chromosomes, 23 from our mother and 23 from our father. They contain all of our genetic information. And in malignant diseases, you can have major abnormalities in the chromosomes of the cancer cells. Not in the rest of your body, just in the cancer cells. And they happen because of errors that are made when the cells are replicating their chromosomes.                                                                 

So, in CLL, there are four common abnormalities that we look for in a test called FISH, and they tell us a lot about the patient’s prognosis. And there’s one in particular that we look at that has a major impact on our decision making, and that’s a deletion on Chromosome 17.

So, a missing piece of Chromosome 17. And the reason that that’s important is it tends to be an aggressive form of CLL. It also does not respond to chemotherapy, or if it does, the responses are very, very short-lived. So basically, that’s a contrary indication to receiving chemotherapy for your CLL when you should receive another form of therapy if you have a 17-P deletion.

And then, finally, we look at a type of – we look for individual gene mutations in the cells. And that’s different from IGHV mutational status, although the names are kind of similar.

So, in CLL, there are numerous genes that can be affected by mutations that alter the function of the gene. In some cases, it makes the gene non-functional; in some cases, it changes the function in some way that perturbs the normal functioning of the cell and contributes to the malignant transformation of that cell.

So, the most important one, again, relates to a gene called TP-53. So that’s the gene that is deleted if you lose a piece of Chromosome 17. It’s located on the P arm of chromosome 17. If you mutate that gene, it has the same consequences essentially for the cell as if you delete it by deleting a piece of the chromosome. And the two often go together, so you’ll have a 17-P deletion and a mutation of the TP-53 gene on your other Chromosome 17. Because remember, you have two chromosome 17s. So, if you lose both, it may be even worse than only having one. However, it does seem that if you only have a mutation on the TP-53 gene, but you don’t have a deletion on Chromosome 17, that the responses of those patients to chemoimmunotherapy are still really poor.

So, it’s very important to find out, do you have a TP-53 mutation as well as do you have a deletion on Chromosome 17 before you embark on treatment, particularly if that treatment is going to be chemotherapy. So, those are the three things that we look for before    we start any patient on therapy.

What You Need to Know About Lung Cancer Research

What You Need to Know About Lung Cancer Research from Patient Empowerment Network on Vimeo.

As a lung cancer patient, why should you stay informed about research? Expert Dr. Heather Wakelee reviews what patients need to know.

Heather Wakelee, MD is Professor of Medicine in the Division of Oncology at Stanford University. More about this expert here.

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Transcript:

Dr. Wakelee:

So, there’s so much happening in lung cancer research now, it is hard to really narrow it down to one thing to be specifically excited about. Where we have made so much progress in particular is with target treatments, and also with immune therapy. So, when we think about the targeted treatments, it’s only been about 15 years since we first learned about drugs that would specifically target the EGFR gene mutations.

And when we found a tumor with an EGFR gene mutation, we then had a medication we could give that would work better than chemo. And now we have five EGFR drugs available in the US. And then we found out about this ALK gene mutation that happen in some tumors. Now we have five drugs that work there. And the with ROS1, that was found, and now we’ve got four drugs that work there that are approved.

And it seems that we keep learning about more and more mutations, so those are mutations called NTRK and BRAF. And with all of those, we now have drug treatments, so it’s been very, very rapid discovery of specific gene mutations and drugs that work for that. And I think we’re continuing to see new targets being identified and new drugs being found.

And also, when those drugs stop working, better understanding why and what we can do to help them work longer, or what we can give next. So, that’s a very active area of research that’s exciting. And then we have the immune therapy. So, the ones that are available so far are drugs that block either PD-1 or PD-L1, and that's one of the really important stop signals for the immune system.

And tumors can use that stop signal to block an immune reaction to a tumor. But if you block that stop signal then the immune system can attack the cancer. So, that's really important, these PD-1, PD-L1 drugs.

We also know about another stop signal called CTLA-4, and there’re drugs that block that as well. And now, where there’s a ton of research is in trying to work with other parts of the immune system, other either pro-immune or anti-immune signals, and changing those in a way where we can improve the ability of the immune system to find the cancer cells and attack the cancer cells.

So, there are many, many studies being done with drugs, and especially in combinations, trying to get that response against the cancer from the immune system to be even stronger. And that’s, I think, where we’re making the most exciting headway now.

New and Improved Lung Cancer Treatment Options

New and Improved Lung Cancer Treatment Options from Patient Empowerment Network on Vimeo.

Are there new lung cancer treatment options that you should know about? Expert Dr. Heather Wakelee reviews the latest research. Looking for more information? Download the Find Your Voice Resource Guide here.

Heather Wakelee, MD is Professor of Medicine in the Division of Oncology at Stanford University. More about this expert here.

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Transcript:

Dr. Wakelee:

So, the treatment of lung cancer has been changing very, very quickly. We’ve had a lot of new options that have become available in the last few years, and there’re new ones coming along all the time. When I started treating lung cancer, which was a number of years ago, we were able to treat and help people.

But our only real option when the cancer was metastatic was chemotherapy. Chemotherapy is still an important part of treatment for many people, but now we have other options. So, starting about 15 years ago, people were able to identify that some tumors had specific genetic changes. We also call these molecular changes, or gene mutations, or just mutations in the tumor. They have a lot of different names.

But when we do find them, these are things like EGFR or ALK or ROS or BRAF or MET, we actually have different treatment options that only work for tumors that have those specific genetic changes, and don’t work in tumors that don’t have those. So, when we talk about genetic changes a lot of people think, “Oh, that’s something that I’ve inherited.”

These are not things that are inherited. This is not something that’s in the whole person. It’s just in the tumor. So, it’s a mutation that happened in the DNA of the cell, and that cell then became the cancer. And depending on what that mutation or mutations are, we still can have chemotherapy, and that can work.

But for specific ones, and specifically EGFR, ALK, ROS, BRAF, we know that there are pill drugs and oral medication that actually is gonna be better than chemo, at least for a period of time, if a cancer has that specific mutation.

So, it’s really, really important to figure that out. It’s not something a doctor can sort out just by looking at the patient or looking at the tumor under the microscope. We have to do special testing, looking at the tumor DNA.

And we now have ways of looking for those mutations, not just in the tumor tissue, but also sometimes with blood. So, we can draw a blood test and look for those as well when there’s a tumor that’s shedding the DNA. So, it’s really important to think about that. And we now have a whole host of medications that we can offer people when we the find these mutations that we didn’t used to have, even a few years ago.

And, actually, if you think back over the last five years, we’ve had new drugs approved, a few of them every year, for these specific gene mutation tumors, so that’s really, really exciting. The other thing that’s changed dramatically just in the last five years is what we call immune therapy.

So, when we think about the different types of treatment, chemotherapy works by poisoning DNA. And in order to make a new cell, you have to make new DNA. Tumors are doing that more than a lot of normal tissue, and so we’re able to give chemotherapy and specifically hurt tumors and not the rest of the person very much.

With the targeted treatments where we find a gene target and where there’s a gene mutation in a tumor, those are medications that specifically hit that altered gene, that altered protein made by the gene. And then they work really, really well. What immune therapy does is it actually changes the way your body’s own immune system interacts with the tumor. So, we have a lot of types of immune cells, but the ones that are involved in really fighting the cancer directly are called T cells.

And so, normally, a T cell would recognize something that’s foreign like an abnormal-looking cell that’s a cancer, and attack it. But we have a lot of different systems in our body that stop the T cells from recognizing normal tissue and attacking it.

And one of the best systems for that is something called PD-1 and PD-L1. And so, if you have a T cell and it sees a PD-L1 signal on tissue, it assumes that that tissue was normal tissue and it doesn’t attack. But if you can hide that PD-L1 signal, then if it’s a T cell, a part of the immune system comes in and doesn’t see the PD-L1, it doesn’t get the stop signal. It’s not told to not attack. So, it could attack the tumor better.

And I’m not describing it well because it’s so complicated. There are a lot of different factors that help a T cell know whether to attack or not to attack. But, again, one of these key stop signals is the PD-1, PD-L1 interaction. And so, scientists were able to develop medications that can block PD-1 or PD-L1. And when those medications are in the body, if a tumor is using that particular stop signal as a way to hide from the immune system, when you give the medication that blocks it then the tumor is no longer hiding.

And then the immune system, those T cells, can come in and attack. So, these immune treatments, and there are now a lot, and so these are drugs, like pembrolizumab, also called Keytruda; nivolumab, which also called Opdivo; durvalumab, which is called IMFINZI. And there are many, many others. Those medications have now been shown to really, really help to fight cancer, particularly when the tumor is using that PD-L1 signal. But they can also be combined with chemotherapy and then they work even if there’s not a lot of PD-L1 in the tumor. So, again, it’s a very complex story.

But where we’ve seen dramatic improvements in treatment is we have targeted treatments when the genes are – there are specific genes mutating in tumors. We have immune therapy, which worked for a lot of other people. And sometimes when there’s also gene mutation, but not always, we still have chemotherapy. And then there’s ongoing research with a lot of different medications. Many of them are focusing on better ways to get the immune system to work against cancers beyond what we can already do.

Being Empowered: The Benefits of Learning About Your Lung Cancer

The Benefits of Learning About Your Lung Cancer from Patient Empowerment Network on Vimeo.

As a lung cancer patient, why should you stay informed about research? Expert Dr. Heather Wakelee provides her advice. Find your voice with the Pro-Active Patient Toolkit Resource Guide, available here.

Heather Wakelee, MD is Professor of Medicine in the Division of Oncology at Stanford University. More about this expert here.

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Transcript:

Dr. Wakelee:

So, as a patient living with lung cancer, you have many options today that you wouldn’t have had 5, 10, 15 years ago, which is wonderful.

Because things are changing so quickly, it’s very hard for physicians and other care providers to keep up with all of the latest information. It’s especially hard if you are seeing an oncologist who not only has to keep up with everything that’s happening in lung cancer, but also everything that’s happening in breast cancer, and colon cancer, and melanoma, and so many other diseases.

And so, while everybody does their best to know the latest and greatest in research, and all of the new drug approvals, sometime that’s just possible. So, as a patient, you wanna make sure that you, focused on your particular disease, are up-to-date on what you can possibly know about the best ways to treat your disease, so you can talk to your physician and make sure that he or she also knows about those, and is using that latest information to help you get the best possible care.

There’s also a lot of ongoing clinical trials. And being able to ask about those and know what may or may not make sense for you, is also a reasonable thing to be able to talk with your doctor about.

And sometimes that involves continuing your care with your doctor, but also getting another opinion, particularly at a research center where they might have access to more trials, new drugs, some of which might be better than what’s available, and some of which might not be. But without talking to people about that, you’re not gonna be able to know that.

And that’s why it’s really important to do what you can or your family can do to be educated and know what is going on in the field of lung cancer, so you can get the best possible care.

Diagnosed with Lung Cancer? Why You Should Seek a Second Opinion

Diagnosed with Lung Cancer? Why You Should Seek a Second Opinion from Patient Empowerment Network on Vimeo.

Should you seek a second opinion? Lung cancer expert Dr. Heather Wakelee explains when to consider seeing a specialist. Looking for more information? Download the Find Your Voice Resource Guide here.

Heather Wakelee, MD is Professor of Medicine in the Division of Oncology at Stanford University. More about this expert here.

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Transcript:

Dr. Wakelee:

So, when facing a new diagnosis of lung cancer, one of the questions that often comes up is whether one should go get a second opinion or see a lung cancer specialist. And that is a question that obviously is gonna vary quite a bit by where a person is, where they’re getting seen, and what they’re facing.

I think a time that it’s really critical would be if someone has a Stage III lung cancer or told it might be Stage III. That’s a really good time to get a second opinion and make sure that the group that is taking care of you has had a multidisciplinary discussion. And when I say multidisciplinary, I mean, a thoracic surgeon, a radiation oncologist, and a medical oncologist have altogether looked at what’s going on with the particular case of that patient to decide up front what’s gonna be the best approach.

Because sometimes surgery is the right first approach. And sometimes it’s not. And sometimes radiation’s important, and sometimes it’s not.

So, it’s really critical to have a big team looking at what’s going on for Stage III. And if you’re in a hospital that really doesn’t see a lot of Stages III lung cancer that might be a good time to think about getting a second opinion outside of where you’re being treated.

I think, otherwise, if someone is newly diagnosed and we know the cancer is early stage where surgery might be involved, it’s good to check in that the surgeons who would be doing your operation are surgeons who know about lung cancer and have done lung cancer surgeries frequently. Sometimes in smaller hospitals there are surgeons who do both heart and lung surgery. And we know that the outcomes are not always quite as good in that setting.

Sometimes there’s no choice, and that’s okay. But if there is an opportunity to talk to a dedicated thoracic surgeon who’s used to doing lung cancer surgery, that’s another good time to get a second opinion. When we’re dealing with a more advanced stage of metastatic lung cancer, if someone is newly diagnosed and their tumor ends up having an unusual gene mutation or translocation.

And the molecular changes in lung cancer are really important to know about. And things like EGFR and ALK and RAS, where most medical oncologists will be familiar. But there’re others, like BRAF and RET and MET, and those can really change treatment outcomes as well, but not everybody who sees lots of different kinds of cancer as an oncologist will know everything there is to know about those.

So, if you have an unusual gene mutation, that’s another good time to get a second opinion with someone who’s a dedicated lung cancer expert. And usually those folks are at the larger academic medical centers, so oftentimes in cities, or affiliated with universities.

Another time is if someone does have a tumor with an EGFR, ALK, or one of the more common mutations, but the main drugs have stopped working, that’s often a time where someone who has specialized just in lung cancer might have some other options.

It’s also something to think through when someone’s newly diagnosed, if they know that their doctor has looked at the immune markers like PD-L1, and looked at the genetic changes in the tumor, and has a clear plan that’s gonna involve chemotherapy, or chemotherapy plus radiation, or chemotherapy plus immune therapy.

Then there might not be something that’s gonna be different in an academic center. But before you start treatment, if you’re still feeling okay, don’t have to start treatment tomorrow, and wanna know maybe that there’re clinical trial options, that’s another time to think about getting a second opinion. And a lot of academic centers will work to get people in very, very quickly if they knew they’ve just been diagnosed and they really need to get started on treatment right away.

Diagnosed with Lung Cancer? An Expert Outlines Key Steps

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

Dr. Heather Wakelee outlines key steps that patients should consider taking following a lung cancer diagnosis. Find your voice with the Pro-Active Patient Toolkit Resource Guide, available here.

Heather Wakelee, MD is Professor of Medicine in the Division of Oncology at Stanford University. More about this expert here.

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Transcript:

Dr. Wakelee:

For a patient who is facing a new diagnosis of lung cancer, there are a lot of really important things to keep in mind. But really thinking about top three of them, the first one is that you wanna know what stage the cancer is. And when we talk about stage, we’re talking about how far the caner has spread. So, sometimes a cancer is found at Stage I when it’s still just a mass, a tumor in the lung.

Stage II means that it’s spread into some of the lymph nodes that are still in the lung. And for Stage I and II, for most people, we know that that means surgery is the treatment option. The next stage is Stage III, and that means that the cancer has started to spread into these lymph nodes.

And lymph nodes are just normal part of the body, but it’s a place cancer often will go. And if it goes into the lymph nodes in the center of the chest, called the mediastinum, then it becomes Stage III. And that changes the treatment. It’s usually more complicated. You wouldn’t normally just have surgery. There’s still sometimes surgery, and sometimes radiation, and almost always some sort of treatment like chemotherapy.

But it’s very complex. And usually we recommend that if you know it’s Stage III that you have a team that’s surgeons and radiation oncologists and medical oncologists to think about it. And then Stage IV means that’s it’s spread. So, knowing – meaning that it’s spread in a way where treatments are gonna involve chemotherapy or targeted treatment or immune therapy, and sometimes radiation, but not normally surgery.

And so, because it’s such a big difference in how things are treated based on stage, that’s the most important question to talk to your treating team about. The next most important question, assuming that it’s metastatic or Stage IV because that’s the most common way that we find lung cancer.

If it is metastatic or Stage IV then you wanna find out well, are there any markers, any tumor markers or cancer genetic changes, that are gonna help pick the treatment. And when I say that, I’m talking about gene changes in specific genes. The ones we think about a lot is something called EGFR, or epidermal growth factor receptor; or ALK, which is A-L-K; KRAS. There’s a whole list of them. But the most important are EGFR, ALK, and ROS, and BRAF.

And why that’s so critical is that if you have metastatic cancer and the tumor has one of those mutations then instead of chemotherapy, the best treatments are gonna be pill drugs, so basically, medications that you take my mouth. And we know that when the tumor has one of those specific mutations, the pill drugs are gonna be more likely to shrink the tumor and have that last longer. So, that’s why it’s so important to know about that. And then the other thing that we look at a lot is something called PD-L1, and that helps us determine about the immune therapy.

So, there’s been a lot on the news about this new class of treatments called immune therapy. And those can work for a lot of different people with a lot of different kinds of cancers. But they don’t always work. And this PD-L1 test can help us know a little bit more about when it might be the best choice, or when it might be something we can add to chemotherapy. And so, getting that information back is important, too.

And I’m gonna add a little bit extra to that. A lot of times that PD-L1 result will come back faster than the gene changes of the tumor, the molecular changes to the tumor. And it’s important to have the whole picture, so you wanna know not just what stage, not just the PD-L1, but also if there are any gene changes in the tumor, so that the best treatment choice can be talked about with the care team.

Could Advances in Lung Cancer Research Benefit You?

Could Advances in Lung Cancer Research Benefit You? from Patient Empowerment Network on Vimeo.

Expert Dr. Martin Edelman reviews the latest lung cancer research and explains how it may impact patient care. Want to learn more? Download the Program Resource Guide here.

Dr. Martin J. Edelman is Chair of the Department of Hematology/Oncology and Deputy Director for Clinical Research at Fox Chase Cancer Center. More about this expert here.

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Transcript:

Patricia:

Let’s start with an overview of lung cancer’s research. Can you tell us a little bit about the field right now?

Dr. Edelman:

So, I think the field has been remarkable over the last few years. There’s been more progress, more drugs, more things that have happened in the last five years than probably the prior 50. It’s been an amazing time both for developments in microbiology as well as in immunotherapy of the disease, which is exciting for all concerned.

For patient’s, of course – really a promise of longer, better lives, even cures where we previously did not see any in advanced disease. For the scientists – an amazing amount of new information. And for clinicians and clinical investigators – just almost too many questions for us to answer.

Patricia:

It sounds like the field is really advancing quickly. What do you attribute that to?

Dr. Edelman:

Well, you know, I think there are a number of things. Everybody always talks about breakthroughs, but breakthroughs really happen after decades of other work. And what’s happening now is really a result of many, many years of different types of work. There were our colleagues in immunology who built this area of cancer immunology for many years – I have to say with much skepticism from many, myself included.

The advances in molecular biology – our abilities to do things with tumors to determine genetics at a rate and a pace and a cost that was previously unimaginable. All of these things have developed in the last few years but really are a result of the decades of work before that. If you look at immunotherapy – probably one of our biggest areas of progress – the roots of that are a century old. So, nothing’s really new. It’s just now we have the technology and the ability to really use it. And then I would also say that we’ve created the infrastructure that lets us test this – the people who have done the studies, the endpoints for the studies, the expertise in doing clinical trials – that also was there for decades, and we frequently were kind of ridiculed at times.

Oh, you’re just testing this drug against that drug, but the reality is is it was those incremental advances. It was the ability to know the endpoints, to refine the populations, to develop the infrastructure that allowed for all of this to happen.

Patricia:

Dr. Edelman, as a researcher in the field, tell us why you’re hopeful about lung cancer research.

Dr. Edelman:

Well, I think that we have gone from trials with very small incremental improvements and frequently a very slow degree of progress where if we had a positive study every two or three years, we were thrilled – to the point where we’ve had an avalanche of positive studies. I don’t think my younger colleagues know what a negative trial looks like anymore. Even our negative trials are pretty impressive. We’ve had studies where an immunotherapy agent was compared with chemotherapy. And it was designed to show that the drug would be better.

And it was just as good, and that was a negative study. That’s the correct interpretation, but still I would point out that that’s quite remarkable because these other drugs had taken us 25-30 years to develop. And now we have another drug with a very different mechanism of action that’s as good potentially. That’s impressive. I think we’ve just had an amazing degree of progress in the last few years. We have far more drugs. We understand far more about the disease – the technology at every point from diagnosis to assessment of response to the ability to evaluate better what we’re not doing well. So, our studies now frequently have biopsies before, during, and after treatment in a way of trying to figure out why is stuff working or not working.

Back in 2006 or so, I proposed a study. We ended up doing it, but it took two or three years because we were requiring a biopsy result – actually, not even a new biopsy but just an archived specimen from the original biopsy to determine eligibility, and there was strong pushback that we would never be able to do that. And now, we routinely are getting biopsies and re-biopsying, and that’s over a brief period of time.

So, we’re getting to get better understanding of the disease, and why stuff works and doesn’t work. And I think that that’s why our progress will accelerate. And I would again emphasize progress only happens – real progress – only through clinical trials. We’ve cured a lot of mice for many decades. A mouse is not a person. You actually have to do the studies patient by patient, and I think we are making substantial progress. We almost have too many things to test right now.