How Can Patients Learn About Developing CLL Research?

How Can Patients Learn About Developing CLL Research? from Patient Empowerment Network on Vimeo.

Dr. Danielle Brander explains why it’s important for chronic lymphocytic leukemia (CLL) patients to stay up-to-date on developing research and treatment news. Dr. Brander also shares resources for learning more about clinical studies.

Dr. Danielle Brander is Director of the CLL and Lymphoma Clinical Research Program at Duke Cancer Institute. Learn more about Dr. Brander here.


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Transcript:

Dr. Brander:

I think it’s very important that patients and their caregivers stay informed and advised of opportunities to participate in ongoing research. I think there’s a misconception that with all the favorable progress in treatment options available for CLL, that there’s no longer the need for clinical research participation.

Though, there are a lot of novel options available for CLL, there’s still a lot of ways that we can improve care for patients. That is, there are trials with the next-generation inhibitors or for patients traditionally with harder to treat CLL or may become resistant to the novel agents, there’s a lot of trials looking into how do you combine the novel agents to give patients the best options. And then a lot of the research, too, are not just in the treatments.

But as our science advances into looking at other markers of the CLL cells, or what we call the depth of response, how much CLL you kill with the treatments and how low of a level we can get in terms of detection. This may result in a situation where patients have the opportunity to receive novel treatments, have a really good response, and then potentially stop the treatments and be followed off of therapies, so have the benefit of novel treatment but not with having to go on an ongoing drug forever and ever.

When I talk to a patient about opportunities for clinical trials, I’m really focused on the patient in front of me. That is, I wouldn’t offer or talk about a trial if I didn’t think it potentially could benefit the patient in front of me.

And again, though we’ve had a lot of advances in treatment options, there are certainly a lot of ways that we can engage and hopefully help patients moving forward. There’s been recent studies across all cancers showing that unfortunately a very low percent of patients are offered and enrolled and participating in clinical research studies, and I think it’s really important that patients know there’s a lot of opportunities out there that potentially could benefit them.

The different ways to be advised and informed, again, are some of the resources online educationally for CLL and lymphoma that often post about different sites for clinical trials. There’s a clinical trials.gov web site that all sites in the United States that are enrolling trials with patients have to log clinical trials, and though that has to be updated, it often can be a good beginning site.

But in the end, hopefully the best resource is your treatment team, your oncologist, and your other team that can help point you to what trials might be eligible for you, either at the location where you are or close by.

The last part I’ll point out is though we focus a lot on the treatment clinical trials, in CLL, where patients don’t always need treatment right away or may have treatment and have a response and then have a long period of time afterward, is that many centers are helping to engage patients in research that is not necessarily done during the time of their treatment. Again, to try to understand why some patients have a longer course until they require treatment, or why they might have responded differently, or other ways we can improve their care.

How is a CLL Treatment Path Determined?

How is a CLL Treatment Path Determined? from Patient Empowerment Network on Vimeo.

Dr. Danielle Brander explains the patient-specific factors and disease-specific factors that are taken into consideration when determining a treatment approach for people with CLL.

Dr. Danielle Brander is Director of the CLL and Lymphoma Clinical Research Program at Duke Cancer Institute. Learn more about Dr. Brander here.


Transcript:

Dr. Brander:

There are several factors to take in consideration when discussing individualized treatment approaches or options for patients.

Broadly, this can be divided into patient-specific factors, and then CLL-specific factors. And what I mean by that is patient’s age, even for patients very fit, we know from clinical trials that there’s a different processing, tolerability, and benefit of certain chemotherapies and a higher risk of certain side effects, even with the novel therapies as patients advance in age.

There are other patient-specific factors such as there are other medical problems. We often call these comorbidities. These are things like cardiovascular or a heart problem history, diabetes, kidney function differences. A lot of those factors play into individualizing when you know different treatment side effects what might be the best option for patients.

In the CLL-specific factors, these are some of the markers and characteristics that we have talked about in terms of FISH testing, TP53 mutation status, and IGHV mutation status. Based on recent clinical trials for patients receiving first treatment, if there are any changes, which historically chemotherapy didn’t treat the CLL for as long as we would have liked, we tend to err towards the novel agents for sure. And even across all markers, there can be a benefit of the newer drugs such as ibrutinib or venetoclax, or many of the other next-generation inhibitors that are in development. But for sure, patients with deletion 17p or TP53 mutation should never receive chemoimmunotherapy.

There’s a lot of research going into understanding what other CLL-specific markers may benefit for one treatment type versus the next. And we hope that all patients could potentially benefit from clinical trials both in the options that are offered as well as some of this other testing, which is how do you determine which markers are important for patients in the era of the drugs that we have today.

Why Getting a 2nd and 3rd Opinion Made a Difference In Her Cancer Treatment, With Sasha Denisova

This podcast was originally publish on WE Have Cancer by  on May 7, 2019 here.


Sasha Denisova – WE Have Cancer

Seeking out a 2nd and 3rd opinion in her cancer treatment resulted in a dramatic improvement in Sasha Denisova’s quality of life.

Sasha first appeared on this podcast in Episode 83 where she shared the struggle she faced getting doctors to take her colorectal cancer symptoms seriously.

During our latest conversation she discussed why she made the decision to forego treatment at the Mayo Clinic in Minnesota to seek treatment at Memorial Sloan Kettering in New York City. We also discussed:

  • How she got the courage to challenge the initial treatment recommendations made by her doctor and why it’s important for everyone to advocate for their best care.
  • The importance 0f seeking out opinions from the top rated cancer facilities in the U.S.
  • How she eased herself back into working out in the gym and why working with a guided fitness instructor was important.
  • Why exercise is vital to her well-being and how most cancer patients can find an exercise routine that works for them.

Take Control Of Your Care When You’re Seriously Sick via NPR

This podcast was originally publish on NPR by John Henning Schumann, Mara Gordon, and Chloee Weiner on September 7, 2019 here.


Finding out you have a serious medical condition can leave you reeling. These strategies from medical and lay experts will help you be in control as you navigate our complex health care system and get the best possible care.

Here’s what to remember:

1. Your primary care doctor is the captain of your health care team.

With any serious diagnosis, there will usually be more specialists to see. Having a primary care doctor you trust helps coordinate the information flow and keep track of the big picture. Your primary is on her toes for possible medication interactions. Regular preventive measures shouldn’t be overlooked, either.

2. Don’t be afraid to get a second opinion.

If you’re offered treatment such as chemotherapy or surgery that can be life-altering, it’s crucial to get more than one opinion, ideally from a doctor working for a different institution. Oncologists and surgeons expect patients to seek second opinions — many provide them as a major part of their practice. If your doctor resents you seeking more opinions, that’s a red flag.

3. Get organized, stay organized, and find someone to help you if you can’t do it yourself.

Make a list of what you hope to accomplish at the doctor’s office. If for some reason you aren’t able to take notes, bring someone along who can act as an advocate and make sure your concerns aren’t overlooked. Ask for copies of your medical chart and test results so that you are part of the conversation — you have a legal right to see your records.

4. If you need a procedure, go to someone who does it all the time.

It’s true for medical care as it is in life: The more a doctor does a procedure, the better at it she’ll be. This means fewer complications and better outcomes. It’s OK to ask your doctor how many times she’s done a procedure; a high volume means competence when things go as planned, and calmness for unforeseen complications.

5. Use the Internet, but use it wisely.

Contrary to what you may think, your doctor wants you to be well-informed and engaged with your health. There’s more medical information available online than ever before, but a lot of it is garbage. Stick with trusted sources like the National Library of MedicinePubMed.gov, or learn about and use the U.S. Preventive Services Task Force.

6. Figure out what matters to you, and fight for it

Our default setting for health care is that more testing is always good. But that’s often not the case, as tests have side effects and can cause undue anxiety because of false positives or incidental findings. Have a frank conversation with your doctor about your values and what you want (and don’t want!) and you’ll be an empowered patient with a doctor as your advocate, not your adversary.

Learning How to Simplify Cancer With Joe Bakhmoutski

This podcast was originally publish on WE Have Cancer by Lee Silverstein on June 18, 2019 here.

Joe Bakhmoutski – WE Have Cancer

Joe Bakhmoutski was diagnosed with Testicular cancer in 2016.He founded Simplify Cancer  to provide support and advice to those touched by cancer. During our conversation we discussed:

  • Why he created Simplify Cancer
  • How he came to be diagnosed with Testicular cancer
  • How people perceive various cancers and how some are deemed “embarrassing”
  • What patients can do to prepare for their first oncologist appointment and the free tool he offers on his website to assist with this.
  • The book he’s writing to help men dealing with cancer.

Links Mentioned in the Show

Simplify Cancer – http://simplifycancer.com/

Office Visit Planner – CLL

Appointments with your physician can be overwhelming. To optimize your visit, it’s best to arrive organized and prepared to take notes. Our Office Visit Planner can help. Guides for your first office visit as well as your follow-up office visit, tailored for patients and caregivers, are available below. Download, print and bring along with you to the appointment.

For Patients:

First Office Visit Planner
Follow Up Visit Planner

For Care Partners:

First Office Visit Planner
Follow Up Visit Planner

 

What Should CLL Patients Know About Their Blood Work?

Ask the CLL Expert

Ask the Expert: What Should CLL Patients Know About Their Blood Work? from Patient Empowerment Network on Vimeo.

CLL experts Dr. Susan Leclair and Dr. Justin Taylor discuss how to understand testing with CLL, how CLL patients can advocate for the correct testing, making the most of doctors’ appointments, and more.

Downloadable Resource Guide


Transcript:

Andrew Schorr:

And hello from Southern California. I’m Andrew Schorr. Welcome to this Patient Empowerment Network program produced by Patient Power. We’re so delighted you are here. I’ve been living with CLL since 1996. And so, testing was not as sophisticated then, and it’s come a long way and there are a lot more choices now. So, in this program, we will be discussing how do you know when you need treatment? What tests are important when you’re in a sort of watch-and-wait period? If you start treatment, how do you know if it’s working? How it’s monitored? If you’re in remission? How do you know how deep that remission is? Should you need treatment again, are there other tests that need to be repeated, or new tests to be done? Lots to talk about. I want to thank the Patient Empowerment Network for putting this all together, and for their financial supporters who have no editorial control, that is AbbVie and Pharmacyclics. So, thanks to them for supporting patient education. Okay. If you have a question, send it to cll@patientpower.info. Many people have, so we got tons of questions, and we’ll get through as many as we can in this Ask the Expert program, helping all of us with CLL understand our blood work and what’s needed and when. And we have some great guests with us. First of all, I wanna go to my dear friend who I’ve know most of these 20-plus years as I’ve been living with CLL, Dr. Susan Leclair, laboratory science guru. She joins us from Dartmouth, Massachusetts. Hi, Susan.

Dr. Leclair:

Hi.

Andrew Schorr:

Welcome back to our program.

Dr. Leclair:

And I think we were both very young when we first met.

Andrew Schorr:

Well, you didn’t have grey hair. But I cannot say that I had a full head of hair, but here we go. And I didn’t lose it because of chemo. It was gone, hereditary. Okay. And now let’s scoot down to New York City to one of our top cancer centers in the world, Memorial SloanKettering, where we’re going straight to the lab. And that is Dr. Justin Taylor, laboratory researcher, and also CLL clinician. Justin Taylor, thanks for being with us.

Dr. Taylor:

Hi, Andrew. Thanks for having me. Happy to be here.

Andrew Schorr:

We’ve been wanting to get you with us for a while. And he, folks, is where action happens. They start with mice, and then they start working on what does it mean to all of us with our blood? And, of course, human clinical trials, and Memorial Sloan-Kettering has helped lead the way. Okay. Susan, are you ready to go?

Dr. Leclair:

Sure.

Andrew Schorr:

Okay. So, people worry, what about their tests? And one thing I wanna get off our plate right away, and I’ll just say it for me. So, I get immunoglobulin infusions once a month to boost my immunoglobulins. And you can help us understand what that is. And I get a blood test at the same time. And I worry if the platelets go up a little, or the platelets go down a little, or and then there’re all these MCVs and blah, blah, blah. I don’t understand what they mean. And I worry sometimes if there’s a little blip. But we really worry about—we’re not even worried. We watch the trend, right?

Dr. Leclair:

Right. I would not panic unless you see two consecutive numbers going in the same direction. Now there are a lot of caveats to that, but we don’t have five days on the program. So, basically, statistics don’t work, unless you’ve got at least three values. So, if you started at a value of 1.0, and the next time you got it, it was 1.5, and the next time you got that same test it was, I don’t know, 0.62, they’re not in the same direction. There’s no big change. You’re kinda okay.

You begin to worry only if it goes from a 1.0 to a 2.5 to a 5.0. Now you’re beginning to get a sense that things might be moving in a specific direction. So, you wanna wait. I know it’s not watch-and-wait; I know it’s watch-and-worry. But you have to wait for at least the third one of the values. It’s part of the reason that your physician will use that horrible word, “Fine,” when they look at things, and they say, “Oh, no, this looks fine.” It’s because they’re not seeing that trend going in one direction or another.

Now some tests, you want the trends to be higher; some you want lower. But think about you need three values going in the same direction in a row before something can be considered worthy of, well, worry, or at least worthy of a question.

Andrew Schorr:

Okay. Thank you for that. Justin, I wanna ask you about something we talk about a lot now in CLL, and as you get to the different chromosomal deletions, I guess you call it. So, we’ve known for a long time that one that led to more aggressive CLL was the 17p deletion.

Dr. Taylor:

Yes.

Andrew Schorr:

And now we have medicines that kind of work on 17p, which is cool. So, we got a question from Robert Schneider who said on the CLL patient with 17p, been treated in his case with Venclexta or venetoclax for two years, and had reached MRD, minimal residual disease negative in my bone marrow and blood, what are the pros and cons of stopping treatment if I’ve had this 17p? So, where are we now measuring 17p? And help us understand this MRD level.

Dr. Taylor:

Okay. Yeah. Lots of great points there. I’m glad you brought up the 17p. That is historically a more bad prognostic marker, although as you’ve brought up, we now have drugs that can work for patients with 17p deletions. So, we’re very excited in the clinic to have Ibrutinib and Venclexta, or venetoclax—I’ll use the generic names—as options for our patients with 17p deletions, or other abnormalities that include genes on 17p such as the p53 gene.

And so, those are effective. And we’ve seen some patients that have been lucky, as David, to get into a minimally residual disease, or measurably residual disease negative state from these treatments. But I’d say it’s still the level of our knowledge, at this time, does not allow us to know whether it’s completely safe to stop. And that’s something that’s currently being tested in clinical trials, both in the US, as well as abroad.

And so, we have a trial here at Memorial Sloan-Kettering testing patients who have been on Venclexta and get into this MRD-negative state. If they’re able to stop the drug and it’s basically randomizing—or not randomizing people, they’ll be allowed to decide whether they wanna stop or not.

And then following them to compare the patients that stop versus the patients that didn’t stop to see what the difference in terms of relapse rates are, overall survival, whether it is gonna change the outcome of the disease whether you stop or continue on the drug. So, that’s a great question, and it’s currently one that we’re trying to answer as fast as possible.

Andrew Schorr:

Okay. And, Susan, just so we understand this MRD, these are super-sophisticated tests, right, now looking for cancer cells at like I almost think, maybe not the nano level, but, right? And we haven’t had these for a long time.

Dr. Leclair:

Oh, no, they’re relatively new. For those of us who do have different colored hair than what they started out with, once upon a time, it was one CLL, and we had no treatment for it. And now we have multiple versions of CLLs. And we have, oh, maybe, I don’t know, 10 possible different fairly well-known, fairly well-described genetic anomalies. You’ve got different drugs that go along with it.

So, in each one of those, complexity adds confusion at the same time. So, some of our tests are—oh, no, I take that back. All of our tests have limits. I test for something, and my limit is one in a billion. Well, supposing you have one in two billion? I’m going to come up with a negative, not because there’s nothing in there, but that it is there at such a low number, I can’t pick it up.

So, there are times when you have these results, and minimum residual disease is a great phrase for it. All I can tell you is to the limit of my testing, to the limit of every scientific test we have out there, I can’t find a malignant cell of your CLL in there. Does that mean that it’s absolutely not present?

Andrew Schorr:

Right. But we can measure it better than ever before. And it gives us some confidence. And I think patients want to know. But so, that goes to Justin. Justin, you’re at one of the largest cancer centers. There you are in the lab, and you do all sorts of sophisticated testing. But many of our viewers are around the world and they’re not necessarily being treated at a big academic medical center.

So, the question is, what tests are necessary? So, maybe you could help us understand. If you are out there in the hinterland, and you needed to help yourself as the physician, and the patient just kind of understand what’s going on, what’s the basics? So, first, let’s start at diagnosis. What’s the basics to know what’s going on? Do you have to have a bone marrow biopsy? Do you do CBCs? Do you have to do what we call FISH testing mutational status? What’s like the basic?

Dr. Taylor:

Yeah. Thanks. And we definitely can do, as Susan was saying, many, many tests with different sensitivities and specificities, but kind of the gold standard of proving whether adding these tests makes the difference is to do a clinical trial or a prospective trial, I guess, where you measure these things before patients get treatment, and then see which of them makes a difference in the outcome.

And when you add them all into a kind of analysis that includes all of these tests, which ones are important of themselves because some tests are markers, basically, of something else that you can measure. So, that being said, there have been many studies like this to try to see whether we can add in any of these new tests that have been developed in the decade to the kind of gold standard. And many times all of the new tests that we add aren’t able to distinguish that much more than what the basic tests show, so I…

Andrew Schorr:

…okay. So, literally, let’s just tick off some. Bone marrow biopsy; critical to do?

Dr. Taylor:

That’s very controversial. We still do that. I don’t think that it’s critical in making the diagnosis. That could be made from the peripheral blood flow cytometry, which tells you the markers on the surface of the cell, that they’re different than normal B cells. We still do the bone marrow biopsy to get a sense of the stage of the disease, how much CLL there is. But it’s not absolutely required for the diagnosis.

Andrew Schorr:

Oh, okay. And what about so-called FISH testing; is that important?

Dr. Taylor:

I think it’s important, based on what we talked about with the 17p deletion. It can detect that. That’s a big change on the DNA, on the chromosomes, that can be detected by FISH. And, yeah, many of the tests I was referring to before are looking at specific genes. I don’t think that those are necessary. They definitely can give some insight to the treating physician, but.

Andrew Schorr:

Okay. And then the last one is that I always get this backwards—is it IgVH, IvGH—but the mutational status, why is that important?

Dr. Taylor:

Yes, the IgHV mutational status, if I got it right, is important because there’s—basically falls into two camps. You can have unmutated and you can have mutated, and you would think that the mutated would the worse, but it’s actually the unmutated that has the worse outcomes.

And that’s important, because it’s been shown that this unmutated set of IgHV-unmutated CLL may not be the type of patient that you want to give chemotherapy to. They may not respond as well to chemotherapy. That may be something you want to go straight to one of the new agents.

And for the mutated patients, which have a little bit better prognosis, new agents are definitely on the table for them also, but there’s a subset of those patients who, with chemotherapy, a study done at MD Anderson that followed these patients 20 or more years after chemotherapy, a subset of those with IgHV-mutated CLL did not require further treatment. Essentially, we didn’t say that they were cured, but they were as if they were cured. They only got one treatment with chemotherapy and never required anything again.

Andrew Schorr:

Right. Well, okay. Let me raise my hand. I was in the Phase II trial for chemo, fludarabine (Fludara), cyclophosphamide (Cytoxan) and then rituximab (Rituxan) added in 2000, and I had no other treatment after six months of therapy for 17 years.

Now, I had an MRD test along the way, and dear Dr. Wierda at MD Anderson said, “You know,” with the testing they had then and this is several years ago, “You’re not MRD-negative. You’re probably gonna need treatment again. I feel confident you will.” And so, I knew there’d be another shoe drop. But with the chemo, I did get a long remission. Susan, one of the questions we’ve had is, and you’ve heard this before, people get different lab values from different labs.

Dr. Leclair:

Yes.

Andrew Schorr:

Maybe they had it here. So, you’re like in the international organizations. Shouldn’t there be like one standard; if my hematocrit is this, that’s where it is for everybody? I mean, why does it vary?

Dr. Leclair:

Because you do. One of things that is critical here is that you, the patient, have different levels of hydration from the morning when you get up. This makes absolute sense when you think about it. When you roll out of bed in the morning, you’re not really as well hydrated as you might be at 4:00 in the afternoon, or that you’re not as well hydrated after you’ve run for two hours than you were before it.

Since most of the initial blood work that you use, both in diagnosis and in monitoring, is based on volume, if you got diagnosed with a CBC that was drawn at 3:00 in the afternoon, for the name of consistency, could you keep having your blood drawn at 3:00 in the afternoon? Because that will provide us probably a more constant basis of you are hydrated at this level all of the time.

Andrew Schorr:

Right. But you know what—yeah, but I’m not asking just that question. If I go to the same lab and test at the same time and drink water before, but so, we get lab test results, and in the case in San Diego, it has H’s and L’s, highs, lows, out of the normal range, and I got a bunch of them, okay? But what I wanna know is, is that standard of what’s within the normal range the same at every lab? Or if it isn’t, how come?

Dr. Leclair:

Well, in the case of hemoglobin, for example, if you live in Telluride or Vail or Aspen, you’re at a higher level. There’s a lower amount of oxygen in the atmosphere, so you need more hemoglobin to grab the oxygen from your inspired breath and bring it to the tissues. So, pretty much everybody who lives above Mile High Stadium, so to speak, it’s not that anymore, but everyone will remember it, is probably gonna have a higher hemoglobin than somebody who’s at a lower one.

If I’m in the lab and I’m developing a set of reference ranges for the physicians in that area, then if you come bouncing into Vail and have a CBC, you’re still at your California seaside hemoglobin level. To somebody who’s expecting people to have a higher one, you will look as if you have a lower hemoglobin.

Andrew Schorr:

Right. And I’m going to Colorado in a week or so, so, yeah. Okay. I get it. That was a question we had from several people. Now, Justin, I got a question from you. A lot of the people here, a percentage, have been diagnosed with SLL, not CLL, but we understand they’re basically treated the same. So, help us understand the difference. But what they want to know is should their testing be different?

Dr. Taylor:

Yeah, that’s a great question. We do think of them as the same disease. It’s just the manifestation. In CLL, the abnormal B cells are mostly circulating in the blood, leading to abnormal blood tests with high lymphocyte count.

Whereas in SLL, or small lymphocytic lymphoma, a name that was given because primarily, the abnormal lymphocytes are in the lymph nodes and they don’t circulate in the blood, so patients with SLL would be detected because they have abnormal lymph node swelling.

They might go to a physician who primarily treats lymphoma, which is another related disorder that presents with abnormally enlarged lymph nodes. And so, they oftentimes are monitored different, treated differently, because the cells are not circulating in the blood, so they can’t be detected as easily through a blood test.

So, in my practice, I use the physical exam and monitor wherever the lymph nodes are through examining them, just physical examination. And you can also do a CAT scan, or a CT scan it might be called as well, to measure throughout the body the places you can’t examine within the thorax and abdomen if there are lymph nodes there also.

Andrew Schorr:

Okay. So, the cells are not floating around, so it’s a little different as far as monitoring goes. Okay. So, let’s get to monitoring. Justin, I’ll ask you this, too. So, people wonder, okay, if I’m in remission, how often do I need to be monitored? So, you’re doing the physical exam. My doctor, Dr. Kipps, feels for lymph nodes. He digs under my armpits. He does a lot of stuff.

And that part’s not fun. But and I get these regular blood tests monthly, which are just zapped to them when I get my immunoglobulin, so they’re keeping a watch on me. And I should mention that I have another condition, too, myelofibrosis. So, I got two doctors watching me pretty carefully. But, basically, I don’t see them very often. So, related to testing, is that really an individual thing with your physician as far as just like CBCs, Justin?

Dr. Taylor:

Yeah. To me it’s dependent on each patient, and, as Susan mentioned, the trend of the blood counts, and what treatment you got, how long ago that was. In a general set of rules, the sooner it is after treatment, you might be monitoring it more closely. And then as time progresses, everything’s been looking okay, the time can be spread out, again, based on the individual patient. If there’s continuing, ongoing reason to watch some specific lab test then, as you mentioned, it might be done every so often.

I would say unless there’s something particularly that you’re keeping an eye on, such as you immunoglobulins, you probably don’t need it once a month; every three months is generally acceptable, if everything looks normal, there’s nothing. But in your case, you’re getting these IVIg infusions, and so, they’re testing the levels to make sure you need them every month. And so, it comes down to each individual patient.

Andrew Schorr:

Susan, so, we mentioned this a couple of times, IVIg. And some of our patients who are on this program get it, too. So, what is immunoglobulin, or what are Igs? What is this stuff?

Dr. Leclair:

Immunoglobulins are essentially proteins. They can be transport proteins. You eat a steak, your body absorbs the iron, and it needs to get put on a transporter, so that it can be moved around. So, there’s transport proteins. There are modifying proteins that control how fast or how slow something’s gonna happen.

But the ones you are interested are the immunoglobulins that are antibodies. Now we all know about antibodies because there’s certainly been enough argument across this country in the last few years about antibodies in terms of getting immunizations for children against measles and mumps and other childhood disorders, whether or not it’s Zika, and all the rest.

You have in you, over time, built up a body of antibodies, a collection, an encyclopedia of antibodies that remember that you had that disease 22 years ago. And while you’re not actually making a whole lot of those antibodies, you’re making enough of those antibodies to make sure you’re never gonna get it again.

What happens with CLL folks is that they don’t make either functional antibodies, or they don’t make enough, which means that you at your age might have had an immunization for mumps a long time ago. My guess is you don’t want to have mumps right now. So, we should give you some pre-informed, pre-manufactured antibodies against mumps that will help whatever cells that are in your body that are trying to make mumps antibody to give you enough mumps antibodies so that you never get mumps again.

So, this a procedure that is giving you this infusion of antibodies, is to keep your system at a place where it won’t get sick when you’re in a subway and someone sneezes, when you’re in a restaurant and someone coughs at you, when you find yourself somewhere with a friend who says, “Gee, I hope you don’t mind, but I’m still getting over X.” So, it’s protective for you.

Andrew Schorr:

Okay. And Dr. Kipps here in San Diego says, “Andrew, if you want to travel,” and that’s true, and I like to travel, and we’ve seen many of our CLL friends when we do, he said, “You gotta have the IVIg infusions.”

Andrew Schorr:

Justin, just so we understand, what about—she mentioned immunizations. First of all, where does immunoglobulin come from? My understanding is it’s made from somebody else’s blood. I’m getting like a blood product, hopefully, squeaky clean in that, and I’m getting some immune benefit from that. Is that the idea?

Dr. Taylor:

Yeah, that’s correct. So, the antibodies come from B cells, and that’s why CLL is a disease of the B cells. And so, that’s why they’re, as Susan mentioned, they’re not forming the proper antibodies. So, we can get these healthy antibodies from donors, and it’s usually a pool of those antibodies to get enough to give you that boost.

And I just wanted to mention that not every patient with CLL needs these. You can measure the immunoglobulin levels in the body, and if they’re normal, you may not need the extra boost, especially if you’re early CLL and watching and waiting. And, again, and if patients are getting recurrent infections, that’s another reason that they might need transfusion.

Andrew Schorr:

Right. Yeah, and I’ll mention, to be clear in my case. So, I went 17-year remission, folks. I did get some sinus infections. Usually, if I got a cold, I got sinus infections, took antibiotics, quicker than people who don’t have CLL, of course, and it knocked it out, okay.

What we noticed is, after I had retreatment for CLL with a monoclonal antibody, obinutuzumab or Gazyva, with steroids in my case, about almost two years ago I was getting more often infections. The CLL was controlled, but, like Susan just said, my immune system was inept and it needed some help. And so, Dr. Kipps decided I needed IVIg. But that’s a personal thing with you and your doctor. You may be monitoring how frequently, just what Justin just said, how often you’re getting infections, because it’s certainly not for everybody.

Okay. So, let’s talk. I wanna understand something, Justin. CLL can change over time. So, we mentioned the 17p deletion, or people hear this other alphabet soup, 13q, and all these different things, or trisomy, and all these things. So, the way you start out, is that the way you may be years down the road? And if not, how come?

Dr. Taylor:

Yeah. For some reason, CLL can change. A term you might read about is it’s called clonal evolution. It sounds like “Star Wars” with the clones, but you can basically have the CLL that you started with, it can acquire other mutations, or other abnormalities that you’ve listed there over time, so, even untreated CLL, does change over time. We don’t really understand fully why that is. We know, in general, cancers do that, so CLL seems to be at the faster rate of that ability to change the genetics.

And so, I think the CLL you end up with might not be the same as you started with. And so, this comes to another question that was asked of when to do this testing for 17p IgHV. You often hear the argument that you don’t need those until you’re gonna start treatment because if you get them at diagnosis, and then you’re gonna not start treatment right away, they may change over time, and you wanna reevaluate those at the time of treatment.

So, that is why some patients might not have all the testing done at the time of diagnosis. Not every doctor feels that way, so some patients do get all the tests run at diagnosis, and then again when it’s time for treatment based on the progression of the disease and symptoms. Then often we repeat those just because there’s the possibility that within that time frame, whether it’s a year or several years, that these markers can change.

Andrew Schorr:

Susan, you and I have been around this a long time, and you remember one of the really wonderful patient advocates years ago, Granny Barb Lackritz. Barbara Lackritz. We called her Granny Barb. And one of the words she told us Esther and me, years ago when I was diagnosed, was, “Chill out.”

So, have this array of tests now. And there will be some of our viewers who say, “Okay, I want this test, and I want this test, and I want this test, and I want this test.” And, “Oh, my God, this has moved a little.” And, “Do I need to be retested?” What you tell people to kind of take a deep breath, even though you have this array of testing now?

Dr. Leclair:

I tell them to take a deep breath and to slow down. This is not a disease that is going to “harm you.” That may be in quotations. This is not a disease that will harm you today or tomorrow or even in a year. This is a disease that will allow you to think it through. Well, not necessarily slowly, but deliberately. What you wanna do on these tests is not say, “I want every single one of them.” Because then you’ll get a lot of information you can’t interpret. What you want is, “Let’s do one test at a time.” The results of that test will lead you to the next test.

For example, the CBC gives you a very high white count, and it looks like it’s all lymphocytes. Okay, what do you do next? Well, the next logical question is: Who are these lymphocytes? What are they doing? So, that’s when you do the flow cytometry, and you find the answer of who are they at a gross level, at a fairly simple level. Oh, they’re B cells, or maybe they’re T cells. And in that answer then provides you with the next thing you want to do.

So, instead of ordering them all like eating and taking every single bite out of a huge buffet, you might wanna just wait and follow the detective story as it goes along. And what that will allow you to do is, well, these were my answers in September. Well, these are my answers plus a new one in November. Oh, well, these are my answers in September and November, and now in February. And so, you begin to develop a story. You begin to know your cells. Your physician begins to know your cells.

You can say things like, “Oh, well, in January, I had a cold.” All right. Let’s about then how that cold might have affected the results in January. You already know what the results were in September and November. Let’s look at this in context. You have the time. Use it.

Andrew Schorr:

Right. Now, Justin, we’re talking so much about testing, but you referred to physical exam. So, I think we have to be fair and say you guys look at the complete picture. Like, for instance, is my spleen enlarged? Do I have night sweats?

Do I have new lymph nodes? How big are they? Where are they? Right? Am I getting a lot of infections? Right? So, you gotta look at the whole picture, right? It’s not just the numbers. Correct?

Dr. Leclair:

Absolutely.

Dr. Taylor:

That’s right. Absolutely. Yeah, it’s personalized medicine before that term came to mean doing genomics. It’s every person is different; every situation is different. As Susan mentioned, situational things can happen with infections that change the numbers, and it’s important that – We’re not gonna be able to guess that, so discussing with the patient, hearing the history, taking the time to do the exam, and then, again, putting that into the context and the historical context with that patient.

So, that’s why the patient-doctor relationship is very important. Of course, it’s always recommended, if you want a second opinion, to hear from another doctor or someone that specifically does CLL. But just having your physician that’s known you for a long time is very valuable, as well.

Andrew Schorr:

Let me put in a plug for second opinions for a second. So, Justin’s at one of our premier cancer centers, Memorial Sloan-Kettering. There’re a few of them in New York, where he is. There may be one this way down the interstate from you in New York, or in London, wherever you may be.

And I would say, with a long-term illness, it gave me confidence to check in with an academic medical center. And I actually had teamwork, when I was in a clinical trial, between a local cancer center and a university cancer center.

And I got those doctors talking. That gave me confidence. And when I needed treatment, actually, and ultimately in a trial, they worked together.

So, one of the questions came in and said, “Well, when should I check in with a CLL subspecialist like Dr. Taylor is, even in the lab?” Well, along the way. But as Susan said, “The house is not burning down today.” Okay?

Now, Justin, you’re in the lab there. I have a question for you. So, I have three kids. And one of them, and some people know, are Ruthie, are the producer of this program. And so, we wonder, when you talk about genomics, is there some test we should do to see if my children are at risk for CLL? And should we do that routinely, like you might do in some other more hereditary conditions, when we really don’t know, is there a real hereditary connection in CLL?

Dr. Taylor:

Yeah. We talk about the genetic tests, or the genomic mutations, and that always invokes something hereditary in the genes. But when we actually do these tests here at Sloan-Kettering and other places, we will take the CLL cells, take the DNA from those, and we also get a sample of normal tissue. So, often it’s a swab of the side of the cheek, a swish of saliva, sometimes fingernail DNA, something that we can get that we don’t think has any CLL in it.

And then we sequence them both, and we’re comparing the CLL cells to the normal cells to try to detect the mutations that occurred in the CLL that make them different than the normal cells. So, all of these mutations that we’re talking about are something that happened in the CLL cells sometime during your life. And we’re finding out now that these could have been there, these mutations could have been there for years before they finally manifest this CLL. But they’re not something you were born with. They’re not in the cells of your body or the cells that are passed down to your children. There are very rare cases of heredity CLL, but my understanding is they’re exceedingly rare. I haven’t come across them, but they’re reported in the literature. So, if there’s a very, very strong family history of cancer between generations, a bunch of siblings have a cancer, then that might be a time to consider hereditary genetic testing. Otherwise, CLL is typically thought to arise in these cells along your lifespan. You’re not born with them. They’re mutations that are occurring as you age.

Andrew Schorr:

Okay. So, I’m not recommending my kids get some tests. And also, I’d say, and Susan knows this so well, and Justin, as you’ve gone through your training and graduated to be in the lab and seeing patients, everything’s changed. Everything has changed during my time. And so, if God forbid, one of my family members developed CLL years down the road, it’s gonna be different from what it is now. It’s gonna be different.

So, Susan, just so we understand, go back to something that we talked about, about clonal evolution, okay? And the CLL kinda changing, taking the winding road. Is it the idea that the cancer cell is kind of trying to figure out a way around the medicines, and just proliferate? It’s like sneaky?

Dr. Leclair:

Oh, they’re definitely sneaky. That’s absolutely correct. There are a number of situations that are involved in here.

We don’t really know which one goes with which disease, or if maybe more than one does. But, yes, I suppose, philosophically, you can think of these cells as wanting to live. And they’re gonna do whatever is necessary for them to live. So, you hit them with a medication that is rituximab, probably one of the better known ones. Rituximab hits a particular compound on the cell. And the loss of it, a lot of times, will cause the cell to be damaged and die.

Well, on the cell, and I’m a little on the smart side, I’m just not gonna make that marker on your cell. Or I’m going to put a hinge on it so that it breaks off, so that there’s minimal damage to me. And so, those kinds of things can and do happen to those cells. There is also the issue that, whether we like it or not, every day we go out and interact with something that’s gonna challenge ourselves or our genes in some way.

Three weeks ago, I went to the dermatologist with my husband, because he’s the one who has problems. We walked into this guy’s office and he said, “I’m taking you first. You have skin cancer.” “Excuse me?” That was a surprise to me. Well, how did that happen? It couldn’t have been because I’ve spent a lot of time outside without a hat on or anything like that, but I am not 22 years old. This took a long time for this to happen to me.

So, that’s a sense of a clonal evolution that occurs with repeated incidents of stress. And we all have that, every single day. Sometimes the only thing that happens is nothing. Sometimes you have to get your nose skinned to get stuff off.

And that’s what happens with these cells, as well. They will adapt because they want to live. We don’t, but they do. It is a matter—a contest to see who wins.

Andrew Schorr:

So, Justin, there you are in the lab. And as we come to the end of our program, I guess we wanna make clear, we talked about the whole picture, not just lab tests. But you’re looking at what could be tomorrow, okay. So, it sounds like there’s a pretty good pipeline of treatments of CLL should you have this clonal evolution, whether it’s 17p or something else, where you are gonna have something, please God, to bop it on its head again. How do you feel about it?

Dr. Taylor:

Yeah, we have good treatments now. We mentioned a few of them. I’ll just list some again. Ibrutinib (Imbruvica), venetoclax, idelalisib (Zydelig), obinutuzumab was mentioned, rituximab was mentioned, chemotherapy was mentioned. And so, we have a lot of tools and armamentarium in our pocket. But despite that, none of these are home runs, as it was put recently. So, we’re still trying to come up with other things and figuring out how to sequence them.

So, if you start off on Ibrutinib and then you can go to venetoclax, is that better? Or should we put the two together up front? And that was recently tested. We’re comparing these things and trying to figure out what’s the best way to give them in combination or sequentially to try to prevent this clonal evolution. And in the meantime, we’re coming up with more things to use in the future should these combinations not work.

Andrew Schorr:

Right. And you are. And I just wanna echo something that really the father of CLL study and treatment, Dr. Kanti Rai, talked to us about years ago, as we saw more of these tools you have come together, and you continue as, he said, to try to figure out how to arrange them.

It’s like arranging furniture in the room. There’s more furniture than ever before and you, Dr. Taylor, and your peers start to figure out how to arrange it, and people in laboratory science, Susan’s students, try to give you data to go along with the physical exam to get the whole picture of where that individual patient is. Did I get it right, Justin?

Dr. Taylor:

Perfect.

Andrew Schorr:

Okay. Susan, thank you so much for your devotion. What I get from you, always, is like what Granny Barb says, “Chill out.” You said, “Take a deep breath.” We’re on a long-term journey with CLL. And thank God we have a greater array of treatments. Are you hopeful for all of us, Susan?

Dr. Leclair:

Oh, I’m very hopeful. I think there will be a time when we will see the last person with CLL, just like we will see the last person with a lot of other ones. Look at yourself, Andrew, it’s the perfect example. Seventeen years ago you said, “Oh, God, what am I gonna do? I have to have therapy.” And you had the only therapy we had, and you got 17 years. And now when this happened, you said, “What am I gonna do?” And I said, “Have another 17 years.”

Andrew Schorr:

Right. Right, right. She did. And Esther and I just got back from Sweden, and we had a great time.

Dr. Leclair:

Oh, I’m sure.

Andrew Schorr:

I am so grateful to the medical community, the pharmaceutical community, the healthcare providers. I wanna thank the Patient Empowerment Network for putting this all together. I wanna thank AbbVie and Pharmacyclics for funding it. They had no control. Justin said what he was gonna say. I said what I was gonna say. Susan said what she was gonna say. Justin Taylor, thank you for being with us from New York in your lab. Go get ‘em, Justin.

Dr. Taylor:

Thank you.

Andrew Schorr:

Cure CLL, okay? Susan, thank you so much. You’re retired, but not really. You’re never retired for us, okay.

Dr. Leclair:

You told me I couldn’t.

Andrew Schorr:

No, you’re not allowed to retire. Okay. In Southern California, for Patient Power, but for the Patient Empowerment Network, I’m Andrew Schorr. Remember, knowledge can be the best medicine of all.


Please remember the opinions expressed on Patient Empowerment Network are not necessarily the views of our sponsors, contributors, partners or PEN. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Clinical Trial Toolkit

Expert Advice for Newly Diagnosed CLL Patients

 

Expert Advice for Newly Diagnosed CLL Patients from Patient Empowerment Network on Vimeo.

Dr. Danielle Brander provides her expert advice for newly diagnosed chronic lymphocytic leukemia (CLL) patients and outlines key steps for staying informed and engaged in care decisions.

Dr. Danielle Brander is Director of the CLL and Lymphoma Clinical Research Program at Duke Cancer Institute. Learn more about Dr. Brander here.

See More From The Pro-Active CLL Patient Toolkit

Related Resources

How Can Patients Advocate for Genetic Testing

Essential Lab Tests for CLL Patients

CLL Genetic Tests: How Do Results Impact Treatment and Care

 


Transcript:

Dr. Brander:

For patients newly diagnosed with CLL, I think there are a couple important first steps to take. First is recognizing that this is a long journey, meaning from the time of diagnosis potentially being monitored until requiring therapy, or maybe being a patient that doesn’t ever need treatment, or has to switch amongst different treatment options either due to response or due to a problem tolerating the therapy, is just recognizing that in this long journey it’s also going to be a long time for self-education of yourself, your family, and your caregivers.

And recognizing that at the time of your first appointment with your oncologist, that it’s okay to feel overwhelmed with the information, and just recognize to take the education that you can in pieces, and it’s okay to ask the same questions each time because your understanding is going to evolve with time. There’s only so much information any of us can understand when we’re first hit especially with news and told of leukemia, or even just in trying to understand why patients don’t necessarily need treatment.

It’s somewhat intuitive to all of us to feel like if you find something wrong, especially a leukemia, to want to treat it right away. But I tell patients an important first step is understanding that it is doing something by not doing something if you don’t need to. There’s been a lot of studies over the years showing no benefit to early treatment, and also some side effects, and also that some patients might never require therapy.

So that’s an important first step is understanding that move and that it’s okay to ask the same questions each time. Remind me what we’re looking for if I need therapy, etc.

Also, again, in today’s world, there are a lot of online resources. But one important recognition I would say, is finding the right one. Your treatment team can help guide that. There are also CLL communities that can help guide it to resources that are kept up to date. For example, as I mentioned, there are a lot of new drugs for treatment of CLL, so if you stumble upon research even from three, four, five years ago, that might not adequately reflect out patients do today and all the options that patients have today.

At the time of the first visit, it’s always good to go with a couple of questions in terms of the CLL, particularly if you’re meeting the oncologist for the first time if the testing to diagnose was done by someone other than your oncologist.

You might have had time to think about the questions, but if you’re going and hearing about the diagnosis for the first time, ask for a short follow-up to come back with questions. Because as you go home and process and talk with your family, other questions may come up.

The other important thing I tell patients as a first step is when you’re making the list of questions, try to do it ahead of time, and try to bring someone to be your ears for the appointment, and to take notes, because it’s very easy in the moment to forget everything that’s being said or what questions you might want to ask.

But also prioritize your questions, because what might seem like a short, easy, first question might be a longer discussion, might lead to other questions, and you wanna make sure you prioritize since time is limited, and understanding too much information at once is limited, that you know when you go in what your most important first questions would be.

And then lastly I would say if you’re talking with your team, it’s okay to ask if you want more information or even to understand about research opportunities. If there’s an either blood cancer expert or CLL or lymphoma expert clinic nearby where you might be able to go and get additional information, particularly if you’re thinking about treatment or trial options for you, that doesn’t mean that when you’re seeking out some of those centers that it’s changing who your core care team would be. Those visits can just sometimes be an extra step to help you understand either around the time of diagnosis or just hear in a different way in terms of treatment and trial options. 

 

How Can Patients Advocate for Genetic Testing?

How Can Patients Advocate for Genetic Testing? from Patient Empowerment Network on Vimeo.

How can chronic lymphocytic leukemia (CLL) patients ensure they are getting the appropriate genetic testing? Dr. Danielle Brander shares resources and advice to help patients become informed and empowered to ask questions and advocate for better care.

Dr. Danielle Brander is Director of the CLL and Lymphoma Clinical Research Program at Duke Cancer Institute. Learn more about Dr. Brander.

See More From Your CLL Navigator

Related Resources

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

What is Personalized Medicine?

Predictive (Familial) Genetic Testing vs. Cancer Genetic Testing: What’s the Difference?

 


Transcript:

Dr. Brander:

Patients and their caregivers can advocate for testing by having the information at hand as you meet with your oncology team. There are some tests that are very helpful around the time of diagnosis, especially the FISH test. We talked about how the FISH helps give information about what to expect and what treatment selections to use moving forward, but often these FISH panels also include testing to almost double check and exclude that there’s different type of lymphoma other than CLL present.

So all patients should have FISH at the time of diagnosis regardless of whether they need treatment or not.

There are many good resources online. The NCCN or the National Comprehensive Cancer Network has a guide for not just the treatment but also the diagnosis and initial testing that is helpful for CLL. And there’s a guide for physicians and other oncology team members. And then there’s also a patient-specific guide, and many of these markers are included in that guide and are helpful information that can be brought to the office and also can be helpful supporting information if there’s a concern about insurance coverage.

Another way to advocate would be, in addition to having the resources at hand, is asking what the approval might be for the testing in terms of insurance. And there might be supplemental information that your team or the patient, or their caregivers themselves can provide from these resources that’ll make sure that the testing is covered for patients.

Essential Lab Tests for CLL Patients

Essential Lab Tests for CLL Patients from Patient Empowerment Network on Vimeo

See More From Your CLL Navigator

Dr. Danielle Brander provides an overview of essential lab testing for chronic lymphocytic leukemia (CLL) patients and discusses which tests should be repeated over time.

Dr. Danielle Brander is Director of the CLL and Lymphoma Clinical Research Program at Duke Cancer Institute. Learn more about Dr. Brander. <https://dukecancerinstitute.org/member/brander-danielle-marie>

Related Resources

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

What is Personalized Medicine?

How Can Patients Advocate for Genetic Testing?

 


Transcript:

Dr. Brander:               

So, there are additional laboratory tests besides the genomic or the prognostic markers that patients should have at the time of diagnosis. One that all patients have is a test called the flow cytometry, and that is done often for CLL patients on the peripheral blood. It may also be done on the lymph node or the bone marrow. And this is a profile of the surface of the cells that help your pathologist and your oncologist to confirm that this looks like CLL.

So most patients when they’re told of the diagnosis will have this either from the blood or it’s found on the lymph node. Notably, it’s not required in all patients, and most patients, in fact, to have a bone marrow biopsy at the time of diagnosis unless there’s a concern about other blood counts being low, and it’s not clear why that is going on.

Most of the other tests besides the prognostic genomic genetic markers that we talked about such as FISH, or IGHV, or TP53 are routine tests. So patients will have a repeat blood count, and this should be a blood count with a differential of the white blood count. CLL is a problem of a type of white cells called lymphocytes. So on the differential of the types of white cells you’ll see the lymphocytes are usually marked clearly elevated. But the differential also makes sure that there’s no low other white blood cells such as neutrophils, which are important in fighting bacterial infection.

It’s also a good idea to have at the time – and most patients will – a baseline chemistry, which include the kidney and the liver function. Though definitely not common, some patients can have involvement of CLL of the liver or kidneys.

This is pretty rare, especially around the time of diagnosis. It’s helpful to have those baseline tests. It’s also helpful because the median age of diagnosis of CLL is usually the early 70s, and so a repeat of the baseline kidney and liver function might find other chronic health problems that are important to know moving forward.

Some of the other tests, baseline labs, are more patient specific, and might need follow-up. For example, if the blood count revealed anemia, which is a low hemoglobin or hematocrit, the cells that carry oxygen, your treating team might want to order additional tests for anemia and make sure that the anemia isn’t due to something totally unrelated to the CLL such as iron deficiency or B12 deficiency, etc. So, there might be additional lab tests depending on the additional screening tests that are obtained at that time.

One other test that I’ll – or two other tests that I’ll mention at diagnosis, 1.) Is immunoglobulins, mostly for patients that have had a problem with recurrent infections because patients can have low antibody levels associated with CLL, even if it’s not been treated. So, your team – if recurrent infections have been a problem – may check for those antibody levels, those immunoglobulin levels. A second test that can be helpful at baseline is a test called SPEP or serum protein electrophoresis, which looks for extra proteins in the blood. And again, this can be seen with CLL and other lymphomas, and especially depending on patient’s symptoms, your physician, and treating team might want to obtain those labs.

Again, there are good resources online including the NCCN, CLL and leukemia patient-specific sites that might give a better outline beyond what we can cover today of tests that might be helpful in your specific case.

There are labs and tests in CLL that are repeated over time. Two of the common ones obtained at baseline, the complete blood count and the chemistry, will usually be repeated at every visit after diagnosis for patients not being treated at the time of diagnosis. They’re part of the monitoring, so every three or four months after you’re diagnosed when you see your oncologist and you have an exam, your history of how you’ve been doing, and labs taken, the white count and the chemistries are all to be followed with time.

At the time of treatment, there’s often additional tests that might be done depending on the type of treatment you’re receiving to make sure you don’t have a specific risk for recurrent reactivation of infections, for example. So the testing might change at the time of treatment. And specific to the prognostic biomarkers, the genomic or genetic testing of the CLL that we mentioned, some of them are repeated with time and some aren’t. The FISH, which is obtained at the time of diagnosis is recommended to be repeated. If patients have treatment, the CLL goes into response, and then relapses because the FISH testing can change with time.

The IGHV mutation status, however, as long as it was felt to be an adequate appropriate sample, is a characteristic of the leukemia that doesn’t change with time and would not be repeated. Similar to FISH, it’s a good idea to test the TP53 at the – not always at the time of diagnosis, but before treatment to make sure there’s not TP53 mutation.

But then similar to FISH, if the CLL goes into response and relapses, it’s advisable to repeat the TP53 as that can change as patients have different treatment options and they both help to, as mentioned, inform the first treatment. They’re also helpful to have in mind as patients are being followed on treatments because some patients have a higher risk of the treatment to stop working, for example, if there are higher-risk genomic changes.

 

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

CLL Genetic Tests: How Do Results Impact Treatment and Care? from Patient Empowerment Network on Vimeo.

Dr. Danielle Brander reviews the types of genetic tests used in chronic lymphocytic leukemia (CLL) and explains the role the results can play in a patient’s treatment and care.

Dr. Danielle Brander is Director of the CLL and Lymphoma Clinical Research Program at Duke Cancer Institute. Learn more about Dr. Brander

See More From Your CLL Navigator

Related Resources

Predictive (Familial) Genetic Testing vs. Cancer Genetic Testing: What’s the Difference? 

What is Personalized Medicine?

CLL Health Center

 


Transcript:

Dr. Brander:               

Patients and their caregivers can advocate for testing by having the information at hand as you meet with your oncology team. There are some tests that are very helpful around the time of diagnosis, especially the FISH test. We talked about how the FISH helps give information about what to expect and what treatment selections to use moving forward, but often these FISH panels also include testing to almost double check and exclude that there’s different type of lymphoma other than CLL present.

So all patients should have FISH at the time of diagnosis regardless of whether they need treatment or not.

There are many good resources online. The NCCN or the National Comprehensive Cancer Network has a guide for not just the treatment but also the diagnosis and initial testing that is helpful for CLL. And there’s a guide for physicians and other oncology team members. And then there’s also a patient-specific guide, and many of these markers are included in that guide and are helpful information that can be brought to the office and also can be helpful supporting information if there’s a concern about insurance coverage.

Another way to advocate would be, in addition to having the resources at hand, is asking what the approval might be for the testing in terms of insurance. And there might be supplemental information that your team or the patient, or their caregivers themselves can provide from these resources that’ll make sure that the testing is covered for patients.

Relationships and Chronic Lymphocytic Leukemia: Navigating CLL Together

CLL Patient Café®

CLL Patient Cafe® – Relationships and Navigating CLL Together from Patient Empowerment Network on Vimeo.

A panel of Chronic Lymphocytic Leukemia (CLL) patients and their care partners discuss navigating CLL together.

See More From the CLL Patient Cafe®


Transcript:

Andrew:

Hello, and welcome to this Patient Empowerment Network program: Relationships and Chronic Lymphocytic Leukemia, Navigating CLL Together. I’m your host, Andrew Schorr from Patient Power, been living with CLL 23 years; we’re gonna talk about that. And we have some great guests. I wanna thank our financial supporters for this program who have supported this program with educational grants to the Patient Empowerment Network—that’s AbbVie Incorporated and Pharmacyclics—they have no editorial control over what we’re discussing today.

Okay, let’s meet our guests as we talk about relationships. So, first I gotta start with my daughter: Ruthie Clara Schorr, 25 years-old, in Miami Beach, Florida. Ruthie, you’ve grown up with my CLL, right?

 

Ruthie:

Yep, that’s right.

 

Andrew:

And you’re doing okay with it?

 

Ruthie:

Doing okay!

 

Andrew:

We should mention that Ruthie is our chronic lymphocytic leukemia manager for our CLL programs, so she kinda lives with it in her work, and knows her dad has it; we’re gonna talk about that.

Let’s go to Vancouver Island, British Columbia, just north of Victoria to Shawnigan Lake and a famous boarding school there, where Jay and Maureen Connolly join us; Jay is the patient. So, welcome to our program. And Jay, you were diagnosed with CLL in 2011, right?

 

Jay:

2011, that’s right. And treated early with F and R in –

 

Andrew:

F and R—fludarabine and rituximab—but no treatment since then?

 

Jay:

No treatment since then.

 

Andrew:

But some anxiety highs and lows, right?

 

Jay:

Absolutely. Yeah, with reactions to blood tests, or just state of well-being.

 

Andrew:

Right, and Maureen, you’re his partner through all this. Do you worry about him sometimes?

 

Maureen:

I do, and especially on the blood test days. I always feel a great deal of anxiety when he – he never tells me ahead of time; he just will say, “At 7:45, I’m going to get my blood done,” and I – it puts quite a lot of anxiety over that.

 

Andrew:

Right. Right. And you have two grown children, 30 and 34, but everybody knows about it?

 

Maureen:

Yes.

 

Andrew:

Okay. And you’ve been learning about it?

 

Maureen:

Yes.

 

Andrew:

Okay, well, knowledge is power. Okay, let’s go over to Connecticut to a man who’s known in some circles as “Dr. Pickleball,” okay? But that’s Allan Rosenthal; Ridgefield, Connecticut. Why is he Dr. Pickleball? First of all, he’s a Doctor of Podiatry. He’s really into sports. He’s super-active. But yet, last year—Allan Rosenthal in Ridgefield, Connecticut—when you were not feeling well, your energy went pah-choo, right?

 

Allan:

I would be in a regular tennis doubles game playing with the younger guys, and I just couldn’t keep up. It was disheartening.

 

Andrew:

And you went to visit grandkids and family, and normally, you’d be doing all kinds of stuff with them, and you couldn’t keep up with family, right?

 

Allan:

I was in San Francisco trying to take a hike at Lands’ End with my grandson, and I just couldn’t handle the hills, I had to sit down in the park and just wait, I was very disheartened. In fact, I was gonna take the medication beforehand, but being frightened of taking a medication, I delayed it until after the trip.

 

Andrew:

Hmm, and the medication became Ibrutinib—or trade name Imbruvica—how’re you doing?

 

Allan:

I’m doing great! I just came off the pickleball court this morning. My blood counts are back to normal. I have the energy. I can’t wait to see my grandson in September again.

 

Andrew:

Mm-hmm, okay. And your wife is a nurse practitioner, so you’re –

 

Allan:

Yes, she is.

 

Andrew:

– you’re in the health field; she’s in the health field, has that helped you?

 

Allan:

I think it has. It’s helped because we’re pretty connected in the medical community in my local area. And my wife is pretty connected to Yale because she was formerly working at Yale.

 

Andrew:

Okay, so you’ve –

 

Allan:

And the oncologist I see happens to be – was a patient of mine, and it’s been good.

 

Andrew:

Okay. So, everything is – knowledge is power.

 

Allan:

Right.

 

Andrew:

For Jay and Maureen, is knowledge power for you too? I mean, do you try to research things, or do you just talk to your doctor and say, “What is this blood test mean now?” How do you do it, Jay?

 

Jay:

Well, when I was diagnosed, my oncologist did not seem particularly optimistic. I had CD38 marker and Zap-70, and so, people weren’t specific, but I kind of reading-between-the-lines thought that this was kinda gonna be a four or five-year journey. And at first, I was terrified of knowledge, in a way. I looked in the corner of my medical test—the one on which the diagnosis was based—and I saw this ZAP-70, and it said: indicative of a poor prognosis. And so, I wanted to find out more about ZAP-70, but I was terrified of the Internet because I thought I was gonna open some article, and it was gonna say, “You’ll live six years. There’s no chance you’ll have more than six years,” or three years, or what have you. And it was three weeks or a month before I had the courage, I suppose, to begin researching the condition.

And so, I kept hearing things like “we treat the patient, not the numbers,” and this sort of thing. And I kept realizing that I would be hypersensitive to people with the same markers. So, I’d read something by somebody on the list who would say that 15 years ago, they were diagnosed, and they were ZAP-70 and CD38, so that would be reassuring.

 

Andrew:

Yeah, 15 years ago, right.

 

Jay:

Yeah, and then I would also hear from people like Chris O’Dwyer and –

 

Andrew:

Who’s in Canada, mm-hmm.

 

Jay:

– who were so – and Wayne Wells, and people whose understanding of the technical aspects of the – the biology of the disease, were far superior to mine but had an ability to distill a great deal of information into laymen’s terms. And the more information that I read, the more hopeful I became. And I get scared now and again for a variety of reasons, but I also – I hope to take Ibrutinib next.

 

Andrew:

Whatever is right for you, yeah. Whatever’s right for you. Okay, so this program is about relationships, we’re gonna take with Ruthie in just a second. But Maureen, so your husband’s doing this research, was he sharing any of this with you? Because he’s trying to get smart and trying to calm himself down, so did you talk about it?

 

Maureen:

Yes. So, he did share everything with me, and he even shared the videos. And I didn’t totally understand it, but he seemed very confident, and that helped me through. I mean, as the spouse, I think you’re feeling things quite differently. And there are a couple of different kinds of fear that you have that is different than what your spouse has and tend to keep that to myself because you don’t wanna exasperate what he’s going through. So, it’s a little bit tricky.

 

Andrew:

Now, do you, Maureen, talk to your children separately from Jay? Like do they say, “Hey, Mom, what’s really going on?” and you have like a backchannel? Or do everybody speak openly?

 

Maureen:

Yes, I do. And my – what I try to do is just give them some of the information that Jay has given me, and tell them that hope is there, and that’s what we need to continue to do, and that they should not concentrate on his illness but on his good health.

 

Andrew:

Okay. Ruthie’s our middle child; Ruthie is 25, I’ve been living with CLL 23 years. Ruthie’s got an older brother who’s 29, a younger brother who’s 22. So, Ruthie, why don’t you talk about that, do you kids – I mean, I’ve never really asked you directly: do you talk about it? Like, I had a check-up yesterday, and your older brother sent me a text early this morning, “How’d it go?” But do you guys talk?

 

Ruthie:

Yeah, I think what’s been interesting for me is from when you were first diagnosed, I was so young, it’s really kind of a blur, I don’t remember a lot of the details of your diagnosis because I was so young. And then, when you came out of watch-and-wait, and you first went into treatment, it’s pieces that I remember rather than actually facing the condition. So, you were going to Houston and then coming back, and there were days where you were lying in bed, or sick, or at the hospital. And so, I remember pieces of that, but I think it really wasn’t until your relapse when I was in college that –

 

Andrew:

About a year-and-a-half ago, two years ago.

 

Ruthie:

– right, right, that I started to just really have more of an understanding of how tuned-in that I wanted to be to your condition. And I think the biggest thing has been – CLL has always been a part of our life, but you’ve always had this positive outlook of hope. Like Jay and Maureen mentioned, is really you kinda just have to be thankful in the moment that you’re feeling good. And I think like Allan stated before, he kinda saw this change that happened, he started to get back his energy. And I think for me, when you had started to feel not so well again, and then, you relapsed, and you went back into treatment, although I had concern and worry about, I almost just had this hopefulness that it was like: maybe we can get 17 more years of remission, maybe we can get 17 more years of health.

And so, even though it was stressful at the time, and it continues to somewhat be a stress, and Ari and Aton—my brothers—we discuss it sometimes, I really attribute a lot of the hope and the positivity I have towards it, towards the fact we can hold to this that you feel good today, and hopefully you’ll feel good tomorrow. And if the day comes where you don’t feel good, we’ll deal with it, and we’ll deal with it as a family.

 

Andrew:

Hmm, I wanna go back to Dr. Pickleball for a minute, who played pickleball today and he keeps saying that. But Allan, your family, your level of activity is such that in a way, it’s a measure of how you’re doing. So, in other words, your wife knows you played pickleball today; when if you talk to your kids or grandkids, “Hey. What’d you do today?” “Oh, I played pickleball,” that’s an affirmation that you’re doing well.

 

Allan:

Definitely. I’m listening to that, and I had two daughters, and I guess the biggest stress for me when I came off of watch-and-wait, was really the financial aspect. When I called up with my prescription, I was blown-away with the cost of the medication.

 

Andrew:

The co-pay, yeah, mm-hmm.

 

Allan:

Yeah, I have good health insurance, and I make a good living. But it was outrageous, but there is help out there. And I was talking to my older daughter, this is kinda my retirement, you know.

 

Andrew:

Right.

 

Allan:

Where it’s gonna be.

 

Andrew:

Right, well, I think that important to know. And I think for you in Canada too, Jay and Maureen, the policies are different. We’re in the US, you’re in Canada, there may be people watching worldwide, so there are kind of different issues. First of all, what can you get access to? And second, well, what treatment is right for you? And then, what insurance or policies in Canada, quite frankly, it varies by province what’s available to you. And in different countries, it could be that way as well. And then, based on your income, what is your co-pay; are you on Medicare in the US, what’s your co-pay; do you have commercial insurance? So, you’re right, there are – thank you for bringing that up, Allan, there can be financial questions for a family. And cancer treatment is expensive, for sure is certainly something to be wise about. So, Jay, you have these blood tests, and it sounds like your emotions sometimes go up and down. Have your doctors tried to tell you to, I don’t know, for lack of a better term, “chill-out” a little?

 

Jay:

Oh, absolutely. And I’ve just finally – after eight years I’ve gained some ability to do that. But it just – it was a function of education, of learning not to overreact to the blood numbers. And to look – because I’ve had times when getting my blood count—my white count right now is around 34,000; my last test it was 28, I think. And so, even a year ago I would’ve overreacted to that, I would’ve thought, “It’s gone up 6,000, that’s horrible!” but the fact is that the test before that it had gone down by kinda 4,000.

So, it tends to jump around, and one oncologist took the time to take me through the machine counting, the process of machine counting, and explained that it was dangerous to get too excited about one blood test. And so, that was probably a couple of years ago that he gave me that explanation, and it’s really now that I’ve had another half dozen tests, including one—and this was instructive—I think it was six months ago, my GP phoned me because my neutrophils were at 0.8, or something.

And he said, “Have you seen your – “he said, “How do you feel?” and I said, “Great,” and he said, “Do you have a cold or anything?” I said, “No,” and he said, “Well, I phoned the oncologist because I don’t like the look of the neutrophils,” and the oncologist said, “Well, have him go back in 10 days for another test.” When I went back, my neutrophils were 3.9.

 

Andrew:

Totally different.

 

Jay:

It went from the lowest rest I’d ever seen to the highest test I’d ever seen. So, either somebody in the lab didn’t know how to operate the machine quite as well they should, or there’s that swing in the quality of the machine counting; so that actually helped me relax.

 

Maureen:

Yeah, one of the really important things that the doctor said to us a couple of years ago was, “Jay, maybe don’t pay as much attention to the numbers, just how are you feeling. Make sure that that is at the top of your mind, not the numbers: how are you feeling?” Because through it all, Jay’s felt quite well, and we’ve done some amazing bike trips, and we’ve had some great adventures, and he’s felt good, so.

 

Andrew:

So, Maureen, there in that beautiful British Columbia and you’re around all these kids at a boarding school, can you just go live your life and say, “Yeah, he’s got this chronic condition, and he may need treatment again, and he gets occasional – but let’s just like put it aside,” can you just go, Maureen?

 

Maureen:

Yeah, we pretty much have to because it’s kind of overwhelming and there are always lots going on, and so many people to look after, that I think – we do struggle a bit with that. I think that sometimes Jay wishes there was more attention paid to him. But for me, it’s good to have lots going on. And we look forward to – because we’re at a boarding school, we get lovely long breaks together, and we’re just about to start six – eight weeks together now. And we’re really looking forward to that, and just spending the time on each other and, yeah.

 

Andrew:

Oh, nice. Nice. So, Ruthie, so, unfortunately, you work with CLLs, so it’s kind part of your work life. I’m not saying “unfortunately” because you help a lot of people, but does it get you down sometimes? Or you’re way past that?

 

Ruthie:

I mean, I think – like with anything like this in life, there are days – there have definitely been days since I’ve been working with Patient Power where you – where I talk to somebody who maybe has a completely different story than you do, maybe that’s tried 10 different treatments, or five or 10 different treatments that haven’t worked for them. And that’s kind of a snap to reality of just that it’s a serious chronic condition, and I’m thankful for the positive experience with the different medicines that you’ve had, and the long remission that you’ve gotten from that.

But it definitely – yeah, it definitely sometimes gets me down, and I think I’d be lying if I said sometimes it wasn’t a little exhausting to have it as such a present part in my life all the time. But I think that those days genuinely – they just give me a lot of fire to move forward to try and get people this information. Because if we can help somebody else in that way, hopefully, to not feel the way that I felt when I didn’t maybe fully understand it, or I wasn’t as clued-in, of course you want to do that. But absolutely, I mean, I think it’s natural for it to be stressful, or for it to be upsetting sometimes. But kind of like what Maureen was saying, is like: if you keep busy, and you keep moving, it’s really the only option. And I think with a serious condition like this, you can either let it really just impede your opportunity to function as a whole, or you can move forward and deal with it as it comes, and take things on face value, and do what you can with the situation at hand, so.

 

Andrew:

Well said. I’m just gonna make one comment about Ruthie’s mom, Esther. So, I had my CLL four-month check-up in San Diego yesterday. So, maybe it’s the same for you, but the way they do it at my clinic is: you go to the lab, and you get your blood test, and then, an hour later, you see the doc—in my case a world-famous specialist, Dr. Kipps. And then, he does his physical exam, and you chat for a little bit about your kids and stuff, and then, you go over the blood tests, okay. And you’re right, Jay, about: we look at the trends.

So, my platelets are a little down; lymphocytes are a little caca, but nothing terrible, and he felt it was a very – feels my lymph nodes. But Esther comes with me; Esther comes with me. And I really encourage her to do that, and I think she want to do that because she wants to hear it from him. Is the doctor smiling? Is the doctor relaxed? And I remember vividly he said, “This was a very impressive visit, I’m very impressed with how you’re remaining stable,” and that’s what Esther hears, right? And so, then, we go home, or we have lunch, and we’re good.

So, Allan: so your wife couldn’t be with us today—and she’s in the healthcare field—so, since you’re doing well on an oral therapy and very active, do you think about this much?

 

Allan:

It’s been in the back of my mind; it was at the very beginning. And the first thing – I took Cheryl, my wife, to the oncologist, we know him both personally. And the first thing he says to me, “You’re not die of this,” you know? That put me at ease. And then, talking about children, both my daughters were concerned about—they’re not in the medical field—whether or not it’s inherited. And my wife and I said, “No, it’s not,” so.

 

Andrew:

Right, yeah. To be fair, there’s a very – like a little blip of a – there are some families where they had two people with CLL, but it’s very rare; so, the “likely” to that is definitely very rare. And the other thing that I think—and again, Ruthie and I get to deal with this all the time, and you all have watched videos and been learning—is there’s been tremendous progress. I mean, so what I try to tell my kids is: of all the different cancers—I mean, brain cancer, not so much; pancreatic cancer, not so much; there’s some really terrible diagnoses, but we’re fortunate that the researchers have been able to get all these blood samples from all of us and do the research and develop products. And there seems to be a succession of products; I’ve seen it in the last six, seven years, tremendous change where, Jay, you got kind of the standard therapy in 2011—F and R—and done world-wide.

But what’s lined-up for you next will be whether it’s what Allan has, or I had a whole different—Ruthie mentioned that I came out of remission—I had a whole different treatment. I had an infused treatment of obinutuzumab, or GAZYVA, and that worked for me, and I’ve been in remission going on two years from that. So, it’s very individualized, and I think, Jay, you picked up on that in what you’ve been reading. So, you can drive yourself crazy with where somebody else’s story you assume is yours, even if it’s ZAP-70 positive, or whatever, you know? It could be good, bad, or indifferent, but it’s individualized to you. I’ve learned that.

I mean, Allan, you’re in the healthcare field, you see patients with the same situation, but yet, they’re very different, right?

 

Allan:

Yes. Definitely. I’ve seen some very sick patients; they’ve shared their, quote, “cancer stories,” and my wife even more so. I don’t have it so bad; there’s a lot of hope. There’s a lot of research; I’ve been fortunate so far.

 

Andrew:

So, let’s stay with you for a minute, Allan, how do you and the family look about your future? You got a couple of grandkids, right? I don’t know if you’ll have more. And wouldn’t it be great years from now to dance at their weddings? I mean, how do you view the future? And how do you generally all plan for the future?

 

Allan:

I take it one day at a time, but I’m enjoying life as it is. I’m working, I’m having actually the best time in my practice I’ve ever had because I’m doing what I like to do. I live in a very nice place. I get to do the activities I want; besides pickleball I play golf still, and I still ski. I’m fine. One of the things that was strange that happened to me: I went to two meetings with other podiatrists, and I was really feeling pretty bad about it at the time. I wasn’t on any treatment, and I said, “You know, I have this thing called CLL,” and my friend turns around to me, and says, “My father and uncle have it, and if you start complaining about it, I’m gonna wring your neck!” so to speak. Thank God there’s research out there, continued strives, and medication. And again, I’m grateful for this Patient Power.

 

Andrew:

Thank you.

 

Allan:

And all of the other – the charitable contributions as far as the finances are concerned for patients too.

 

Andrew:

Right. So, do you make plans for the future? You and your family?

 

Allan:

Yes. Yeah.

 

Andrew:

Okay, you just keep on keepin’ on. So, we have to mention just about future plans—Ruthie I want a big smile on your face—Ruthie about a week ago got engaged, so somewhere down the line is a wedding, and I’m gonna dance with that young lady at her wedding, and Daddy’s gonna be right there. And I have full expectations to do that, I don’t know whether it’s next year, or the year after. Her boyfriend’s in med school, so you know, Allan, it’s a long, long haul. But at any rate, we’re making plans. We’re doing stuff.

And you, in Canada, you guys have the summer off, or some of the summer off, and you’re gonna spend time together. So, do you make plans? I mean, how do you see the future, Jay and Maureen? How do you see the future, even while you’ve got this in your blood?

 

Jay:

Well, absolutely we make plans. And you know, your relationship to the time and the way the disease plays out is a big deal. When I was diagnosed, a week later, there was an article in Canada’s largest newspaper about CAR-T therapy.

 

Andrew:

Right.

 

Jay:

And I said to my oncologist, I said, “Well, that seems pretty good, can I get that?” and he said, “Well, maybe eventually; probably not,” and then yet, look at how far that therapy has come. I haven’t followed it extremely closely, but it’s my understanding that they’re trying to develop some more cost-friendly options for that, and whatnot. Ibrutinib was just on the horizon at the time; it was in early trials, I believe. And so, when I think of all the medications that I’ve read about over the years, and then I watch in Canada the approval process: Ibrutinib is approved, and [inaudible] [00:31:21] is in the process, and will probably be approved, and so forth. So, there are options, and so, I try to look at the next 20 years. And we – it’s changed our relationship to retirement, we kind of think, “Well, we’ll work another three years, and when I’m about 60, we’ll retire.” We should be okay, it’ll be a modest retirement, but it’ll be an opportunity to go and do some things that we would love to do in a healthy state. We make short-term plans in terms of: we’ve done a lot of bicycle touring, we rode 2,000 miles from Canada down to Denver four years ago on our bicycles, all self-contained; we rode from Ottawa to the Maritime Provinces the year before that.

So, I try to push myself physically because it’s that measure, and it’s a daily measure. I go out for a 20-mile bike ride, and that tells me how I’m feeling.

 

Andrew:

Right, me too. And it’s pickleball in Connecticut and bike riding there, and then I go jogging; right, that’s our barometer. So, Maureen, do you expect to have this guy around for a long time?

 

Maureen:

Yes, I do, and I’m counting on it.

 

Andrew:

Okay.

 

Maureen:

But that’s the difficult thing about being the partner in this: you don’t want to imagine a future alone. So, there’s no point in thinking about it; we’re just planning for a future together.

 

Andrew:

Mm-hmm, amen. And let me just talk to you – we talked about the kids for a minute, but do you have girlfriends, if you will, and they know that Jay has a cancer, and they’re worried about you.  And you have to sometimes set – I don’t want to say “set them straight,” but you have to let people who maybe don’t understand this whacky illness, and help them “get it” that he’s going on, and you’re going on bike rides, and you’re making plans, you know? Put it in perspective.

 

Maureen:

It doesn’t come up very often because Jay and I both work at the same place, and basically have the same friends. They see how healthy he looks and I don’t think very many people think about it. But when it does come up, I just – you know, I think when it first happened, I didn’t think I could manage. I didn’t think I should have to work or do anything except immerse myself in the grief of this terrible thing that had happened to us. But as the years have gone by, it just makes me realize how many people live with some kind of chronic illness, and you just do it. And that’s what I say to my friends, is, “You know, this is bad, but it’s not – but we’re just living with it, and we’re gonna be fine. You have to find hope in all the little things.”

 

Jay:

But one thing, Andrew, we work in a high school boarding school. And when kids are adolescents, they’re so self-absorbed, it’s really good for – it’s a really good place to work. Because they go – I could say to a class, “Well, I have cancer, you know,” and they’ll forget about that in two or three minutes because they just – you know, life is all about them. And I don’t say that cynically in any way; it’s just the stage of life. And that’s been really healthy because teaching courses, you need to concentrate on other people.

And I have my own profound capacity for self-absorption, so it’s a good thing to be in an environment where I’m sort of guided away from that, and away from the worry by my relationships with people. And I find that those—although I’m a bit of an introvert— those lift me up during my working day. And so, that’s been very positive, it’s a busy place, and we’re really forced—if we wanna be part of the community—to get on with life.

 

Andrew:

Get on with it. Ruthie, so you have lots of friends, and when they meet you—and maybe somehow maybe because I do a lot on the Internet—somehow they hear, “Oh, your dad has cancer.” Does everybody just move on, it’s not a big deal? Or do you have to sometimes sort of school people, “Hey, he’s been living with this a long time, he’s a busy boy,”?

 

Ruthie:

Yeah, I mean, I think the initial reaction when people hear the word “cancer” is people get very concerned, and people get very worked up. And then, when I say, “Oh, well, he has had since I was two years old,” they say, “Oh, well, you’re a lot older than two now, so I guess that’s a good thing.” And it’s – you know, I’ve been very fortunate to have lots of friends, and obviously my partner, who are really supportive and tuned-in to this stuff. And I think because I’m so educated on it, it is easier for me to be able to speak with my friends about it and feel confident in the way that I speak about it, and the way that I’m hopeful about it.

I think the other thing that’s really interesting is just with the way that the Internet is now and everyone being so connected, and knowing a lot of intimate details about people’s lives, is that a lot of people are affected by cancer, you know? Whether it’s them directly, or their parent, or their grandmother, or grandfather, or a friend, and I think there’s almost some kind of camaraderie in that. They said, “You know, we all are impacted by this in some way, and if we can keep moving forward, and being hopeful for each other, and kind of willing it into the universe that hopefully, as long as people can get the right care for them, that they’ll live a long life.” I think that’s kind of been settling, for me and for the people that I surround myself with. And I think it’s been really positive, even though the root of being connected by something like cancer is something you never hope that someone can relate to you on.

 

Andrew:

We don’t choose it.

 

Ruthie:

It’s almost – right, but it brings some kind of peace in the fact that you say, “Hey, I know what you’re going through,” or “I know somebody who went through what you’re going through.” And I feel that I’ve been able to hopefully, give some of that insight to some of my friends who have with their parent, or with someone else in their family, been able to face it and say, “Hey, you know, I’ve been around this for my entire life. And I really don’t remember a world where it wasn’t a part of my life.”

And it helps when they see all of your adventures on Facebook, and all of the wonderful travels that you do, that you’re like, “You know, Andrew’s just out there and just doing it,” and it’s not letting it limit you. And I think that that brings a lot of peace to the topic.

 

Andrew:

Amen. So, we do home exchanges, and so, we’re going to Sweden shortly. And so, at that conversation with the oncologist yesterday, I said, “There’s a big CLL cancer institute in Stockholm,” Karolinska it’s called. And I said, “Could you make an introduction to the CLL specialist there, just in case something went south, or whatever. He said, “Sure,” so that gives me confidence, so now I’m a little less worried, I’ll take my little antibiotics with me, but we’re going. We’re going, okay? And I think that’s what any of us – for any of us about going – I wanted to just share one little story I’ve shared before about communication with children.

Now, many of us as we are diagnosed with CLL are older, but actually, I was diagnosed when I was 45, which is young for CLL. Allan, you were – you got some white hair, so you were a little older. But, so Ruthie’s older brother, Ari, was just like, what? Six, or something like that, and he knew there’d been a lot of whispering in the house, and something’s going on with Dad, and there are doctor visits, he knew something was going on. You know, a lot of hushed tones. And so, I was talking to him at bedtime one night, and he was just six, and he said – I said—Ari is his name—I said, “Ari, Dad has a sickness in his blood,” and I’ll never forget this question—our family’s Jewish—he said, “Well, will you be at my bar mitzvah at age 13?” which to him was like forever, you know, in the future.

 

Ruthie:

It was, yeah.

 

Andrew:

Yeah, and I said, “Yes.” Now, at that time—and this was, what, 2000 or 1999, whatever it was—I didn’t know. I really didn’t— 1998—I didn’t know. And the treatments weren’t so good; there was a lot of question. So, flash forward years later—at a bar mitzvah often the parents give a little talk, and there’s a blessing of your kid, and all that—and so, I gave a little speech. And everybody in our community knew what was going on with me. And I told the story of telling Arian that I didn’t really know whether I’d be standing there that day, and here I am, and everybody was crying and stuff like that. But my point is, I’ll never forget talking to the kid, but I’m so glad I did.

And one last thing is: the other day I had coffee with a guy here in California; he’s in his mid-50s, diagnosed with CLL; has started treatment like you, Allan, but he hadn’t told his kids, teenagers. And he was struggling with whether he was gonna do it, and he was waiting for them to finish school in June. And I said, “Do it,” and his wife has eight siblings, all living in the area, and they hadn’t told anybody. And he hadn’t told his parents. And they’re all talking all the time, it was like the elephant in the room. And I said, “You will feel such a load coming off you,” so I have to check back with him; so now the kids are out of school, hopefully, he’s told them.

So, Allan, would you agree openness puts it in perspective for people?

 

Allan:

Yeah, I hear a lot in my own practice, a lot more horror stories. And yes, I’m a person who shares also like you, and I hope I have the same story with my grandsons for their bat mitzvahs – bar mitzvah.

 

Andrew:

Yeah, yeah, they will. You will. So, I think, again, I get to hear – talk to all the doctors, and Ruthie does research, and we get to meet everybody, and I would just say for our audience and for you guys: it’s a really, really positive time. It doesn’t vary by people. Jay mentioned CAR-T; there are some CLL patients who’ve had CAR-T. I was following a woman on Facebook who had CAR-T at MD Anderson in Houston just last week, and then, she was happy to be walking out of the hospital and at last check was doing well. Do we know how this experimental approach is gonna work, or for how long for the sickest people with CLL, the very sickest people? But Jay, we didn’t – going back to when you saw that article, that was like pie-in-the-sky, and now there are people benefiting from it.

So, I think we should – in our conversations, I believe in open conversations with people. They can see us play pickleball, they can see us go on 20-mile bike rides, they can see us dance at our kid’s wedding—Ruthie—and to say: well, you would rather not have it, for sure; you’d rather be cured, for sure; but short of that, if you can live well…right? Right? So, Maureen, can you put your arm around this guy, he’s gonna be okay?

 

Maureen:

Yeah, absolutely!

 

Jay:

Andrew, just on the openness issue, because I teach English and I’m accustomed to talking about all kinds of human elements, I decided early on just to be completely open with people. And they’re often far more uncomfortable than I am because the “C-word” is being used, and they are – it makes them immediately anxious. Because I think some people – you know, you have a lot of acquaintances and a few friends, and the acquaintances think, “Oh, well, he was treated in 2012, he must be cured.” And so, they won’t necessarily even have an awareness that it’s an ongoing condition.

But I just have always from the beginning—after a few months, after I grew accustomed to the diagnosis—tried to be just very straightforward with people about options. And that’s really what I always think of, that’s the way I think of it; I think I’m fine now. This could go another five years before I need treatment, and it could be a year. It’s impossible to know. But I can immediately identify the likely next treatment; and failing that, I know there’ll be other options. And then, I’m starting to be able to see beyond that treatment to the treatment after that. So, God willing and the creek don’t rise, I could be around for quite a while.

 

Andrew:

We’re gonna do this again in like 20 years, okay? We’ll do it like through holograms or something. Okay, well we’ve had a great discussion. I wanna thank Jay and Maureen for joining us from Canada; I wish you happy bike rides in Canada. Dr. Pickleball Allan, you with grandkids and everything, have a great time. And if I ever need a sports medicine podiatrist, I’m gonna come over to Connecticut and have you look at my feet, okay? And then we’ll go – we’ll play pickleball, okay?

 

Allan:

Sounds good.

 

Andrew:

And Ruthie Clara Schorr, I’m gonna be dancing at your wedding. Thank you for sharing your story, and thanks for your dedication to people in the CLL community. And again, relationships are important, open communication— we’re all believers in it—and go live our lives. Thanks to the Patient Empowerment Network for pulling this all together. Thanks to their funders, AbbVie and Pharmacyclics, and let’s keep that research going, and let’s go live our lives.

In California, with my friends in Miami, and Canada, and Connecticut, I’m Andrew Schorr. Remember: knowledge can be the best medicine of all. Thanks for watching.

After Cancer, Ambushed By Depression

At some stage in all our lives there comes a time when feelings of sadness, grief or loneliness gets us down. It is part of being human. And after all, what’s more human than feeling down after such a life-changing and stressful event like cancer? Most of the time, we bounce back; but what happens when the blues stick around and start to interfere with our work, our relationships and our enjoyment of life?

Dana Jennings, whose writings in the New York Times about his treatment for prostate cancer, so eloquently captured the mix of feelings which cancer survivors face after treatment ends, wrote that while he was “buoyed by a kind of illness-induced adrenaline” during treatment, once treatment ended, he found himself “ambushed by depression.”

Jennings’ words will have a familiar ring to many of us who have struggled with that unexpected feeling of depression and loneliness that creeps up on us after treatment is finished. For some survivors, depression kicks in shortly after diagnosis or at some stage during treatment; for others it may ambush them weeks, months or even years after treatment ends.

What Causes Depression?

Depression is a word that means different things to each of us; people use it to describe anything from a low mood to a feeling of hopelessness.  However, there is a vast difference between clinical depression and sadness. Sadness is a part of being human; it comes and goes as a natural reaction to painful circumstances, but it passes with time. Depression goes beyond sadness about a cancer diagnosis or concern about the future.

In its mildest form, depression doesn’t stop you leading your normal life, but it does make things harder to do and seem less worthwhile. At its most severe, the symptoms of clinical depression are serious enough to interfere with work, social life, family life, or physical health.

Incidence of Depression in Cancer Survivors

Research shows that cancer survivors are more likely than their healthy peers to suffer psychological distress, such as anxiety and depression, even a decade after treatment ends. Although estimates of the frequency of depression in cancer patients vary, there is broad agreement that patients who face a disruptive life   event like cancer have an increased risk of depression that can persist for many years.  While most people will understand that dealing with a chronic illness like cancer causes depression, not everyone understands that depression can go on for many months (and even years) after cancer treatment has ended.

The Challenge of Identifying Depression in Cancer Patients

Some research has indicated that depression has been underdiagnosed and undertreated in cancer patients.  This may result from several factors, including patients’ reluctance to report depression, physician uncertainty about how best to manage it, and the belief that depression is a normal part of having cancer.

Several of the characteristics of major depression listed below– like fatigue, cognitive impairment, poor sleep, and change of appetite or weight loss—are hard to distinguish from the common side effects of cancer treatment. This makes it harder to tease apart the psychological burden of cancer, the effects of treatment, and the biochemical effects of the disease.

Are You At Risk of Depression?

Depression can occur through a combination of factors, with some of us being more prone to depression than others.  Factors such as a history of depression, a history of alcohol or substance abuse, and a lack of social support can increase the risk of depression in both the general population and among cancer patients.

Even if a person is not in a high-risk category, a diagnosis of cancer is associated with a higher rate of depression, no matter the stage or outcome of the disease.

Distress over a cancer diagnosis is not the same thing as clinical depression – it is important to recognize the signs and get treatment. The first step is to identify if you are experiencing symptoms of depression.

Try answering the following two questions.

Have you, for more than two weeks (1) felt sad, down or miserable most of the time? (2) Lost interest or pleasure in most of your usual activities?

If you answered ‘YES’ to either of these questions, you may have depression (see the symptom checklist below). If you did not answer ‘YES’ to either of these questions, it is unlikely that you have a depressive illness.

Depression Checklist*

(Tick each of the symptoms that apply to you)

  • Trouble sleeping with early waking, sleeping too much, or not being able to sleep
  • On-going sad or “empty” mood for most of the day
  • Finding it hard to concentrate or make decisions
  • Feeling restless and agitated, irritable or impatient
  • Extreme tiredness and lethargy
  • Feeling emotionally empty or numb
  • Not eating properly; losing or putting on weight
  • Loss of interest or pleasure in almost all activities most of the time
  • Crying a lot
  • Losing interest in your sex life
  • Preoccupied with negative thoughts
  • Distancing yourself from others
  • Feeling pessimistic about the future
  • Anger, irritability, and impatience

Add up the number of ticks for your total score: _______

What does your score mean?

  • 4 or less: You are unlikely to be experiencing a depressive illness
  • 5 or more: It is likely that you may be experiencing a depressive illness.

NB This list is not a replacement for medical advice. If you’re concerned that you or someone you know may have symptoms of depression, it’s best to speak to your doctor.

Depression – The Way Forward

It’s common to experience a range of emotions and symptoms after a cancer diagnosis, including feelings of stress, sadness and anger. However, some people experience intense feelings of hopelessness for weeks, months, or even years after diagnosis. If you continue to experience emotional distress from your cancer, it’s very important to know that help is available, and to get the help you need.

The first step on the path to recovery is to accept your depression as a normal reaction to what you have been through –don’t try to fight it, bury it or feel ashamed that it is there.  Think of your depression as just another symptom of cancer. If you were in physical pain, you would seek help, and it’s the same for depression.  There are many people willing to help you but the first step is to let someone know how you are feeling. Finding the courage to talk to just one person, whether that’s a loved one, primary care physician, or specialist nurse will often be the first step towards healing.

The psychological effects of cancer are only beginning to be studied and understood. In time, doctors will not only treat the body to kill the cancer, but will treat the mind which suffers the consequences of the disease long after the body has healed. When you’re depressed it can feel like you are barely existing. By obtaining the correct medical intervention and learning better coping skills, however, you can not only live with depression, but live well.

A Note on Helping a Loved One with Depression

Perhaps you are reading this because you’re concerned about a loved one who might have depression.   You may be wondering how you can help. For people who have never experienced the devastating depths of major clinical depression, it may be difficult to understand what your loved one is going through. Depressed people find it hard to ask for help, so let your friend or family member know that you care, you believe in them and that you’re there for them.

The best thing you can is to listen. Don’t offer preachy platitudes about things never being as bad as you think, or suggesting the person snap out of the depression. Our culture doesn’t encourage people to talk about their emotional pain. We’re taught to suppress our feelings, not to show weakness, to get over things quickly. Most people, when they feel upset, benefit greatly by talking to someone who listens with empathy and without judgment. Most of the time the person who is depressed is not looking for advice, but just knowing that someone cares enough to listen deeply can make all the difference.


*References: American Psychiatric Association. Diagnostic and statistical manual of mental disorders, 4th ed (DSM-IV). Washington, DC: APA, 1994; and, International classification of diseases and related health problems, 10th revision. Geneva, World Health Organisation, 1992-1994.