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.

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

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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. 

 

Facing a Cancer Diagnosis: Advice From An Expert

Facing a Cancer Diagnosis: Advice From An Expert from Patient Empowerment Network on Vimeo.

Brittany DeGreef, a genetic counselor, provides essential advice for when you are facing a cancer diagnosis emphasizing that leaning on supportive friends and family is key.

Brittany Degreef is a Genetic Counselor at Robert H. Lurie Comprehensive Cancer Center of Northwestern University. More about this expert.

See More From the The Pro-Active AML Patient Toolkit


Transcript:

One piece of advice I give patients who are just diagnosed with cancer – and we do frequently see patients at least once a week who were just diagnosed either that week or the week prior – is feel what you need to feel. Not every patient is going to react or cope with their diagnosis in the same way as someone next to them, even within the same family. That also goes for caregivers and relatives.  

 So, just because you feel like helping out a relative in a specific way, it might not be the same for your brother or sister or cousin.  

 So, we always tell patients that there is no wrong or right way to cope with a diagnosis of cancer. The way that you approach it is perfectly fine and there’s no right or wrong way to do that.  

So, another piece of advice we always tell patients is don’t be scared to lean on your support network, whether that be family or friends, your healthcare provider, advocacy groups, never be afraid to ask for help.   

And for some patients who feel like they have limited resources, usually hospitals where you’re receiving your patient care has many resources available to you, whether that be emotional, financial, spiritual, logistical. Don’t be scared to ask about those resources. 

CLL Patient Cafe® – March 2019

Managing Side Effects and Symptoms

A group of CLL patients and a care partner discuss living with CLL and how to manage its symptoms and side effects.

For more CLL Patient Cafe® and other programs, please visit here.


Transcript:

Andrew:

Hello, and welcome to this Patient Empowerment Network program. I’m Andrew Schorr, with Patient Power, and I want to thank you for joining us for another one of our CLL patient programs, and today, we’re gonna go from the United Kingdom, England, all the way to California with a group of people as we discuss living with CLL, dealing with symptoms and side effects. Emotional issues, how we communicate with our healthcare teams. I’ve been living with CLL about 23 years now, and also joining me here in California is Esther Schorr, care partner of course. Esther, thank you for being with us.

Esther:

No problem.

Andrew:

And along the way we’re going to include, obviously, the role of someone who advocates for you, and urge you to have someone to do that. Let’s go all the way over to England. We have Adrian Warnock with us. Adrian, you’ve been living with CLL how long?

Adrian:

Well, next month or so it’ll be two years, actually.

Andrew:

Wow, okay, and you’re a physician by training, so when all this medical stuff comes up, you’re evaluating it based on your training probably as well, although I know you haven’t been a CLL specialist.

Adrian:

Yes, that makes it quite an interesting thing, because when you look at the terminology, you have clinical trials. I’ve actually helped them run a lot of clinical trials, but not in hematology, in a completely different disease area. So, there’s some things that are very sort of familiar, and other things are less so.

Andrew:

Right. And we should mention that you’ve had a number of hospitalizations. You’ve had Treatment with FCR, fludarabine, cyclophosphamide, Rituximab, or Rituxan, that many people have had. I’ve had that, too. And right now, you’re doing okay. 

Adrian:

Yeah, I hope so. I mean, it’s early days yet. My last FCR was just a couple of weeks ago. But what I would say is my lymphocyte count is less than one at the moment, so if that continues to be the case, then hopefully we’ll conclude it was a good outcome.

Andrew:

Okay, well we’ll talk more about your journey. Let’s go over to New York. There’s Jay Blatt.

Jay:

Hi, everyone.

Andrew:

And Jay, you were diagnosed when?

Jay:

January of 2016.

Andrew:

Okay, and what led to that diagnosis?

Jay:

What led to the diagnosis was seven years of my platelets diminishing consistently, and also having two bouts of a bronchitis that I couldn’t shake, and then finally, in November of 2015, while fishing on a jetty in the middle of nowhere, I bent down and a blood clot developed in my thing. And at that point, as thick as I am, I knew something was wrong.

Andrew:

Okay, and you’ve had no formal treatment, but you’ve been on a special diet that you believe has helped you.

Jay:

Yes, but not exactly. I’ve been on a macrobiotic protocol that includes diet, nurturing the food a certain way, and exercise, and I develop my own type of CLL wellness program, using macrobiotics as a foundation. And it’s a very blood-centric dynamic, where I believe all good health comes from having healthy blood.

Andrew:

Okay, well, we all want to know what we can do ourselves, and that’s gonna vary by person. I’ll talk about mine as well. And joining us from Southern California, someone who goes to the same clinic at University of California, San Diego, that I do, is Maggie Buckenmayor. Maggie, you are still in the watch and wait phase. When were you diagnosed? 

Maggie:

I was diagnosed on November first, 2018, and my diagnosis happened from just a routine annual blood check. And they noticed that my lymphocyte counts were high.

Andrew:

Okay, and when you were told, maybe even as an offhand remark, that it could be leukemia, that was a heavy blow for you, wasn’t it?

Maggie:

Oh, it was extremely tough. My husband and I were actually travelling, and I got a call from my intern, and she started to talk about my blood results, and said, “Oh, you have some strange blood results. It may just be an infection, or it may be, you may have cancer, and it may be leukemia,” just right there on the phone. And I’ve never felt better. I exercise a lot. I eat a healthy diet.

I’m just in a very, very positive place in my life, and that hit me like a ton of bricks, because I never ever imagined that I would have leukemia, and when you hear the leukemia word, it’s pretty tough. It was pretty tough for me to wrap my head around. So, I went into kind of a tailspin there for a while.

Andrew:

My understanding is you met up with your twin sister, and you were wondering whether you were gonna tell anybody, and then it just came out.

Maggie:

Yeah, and actually, it was during that trip, and I told my husband, “I’m not gonna tell anyone. This is just between you and me. Let’s do more tests, find out exactly what’s going on.” Because at that point, they didn’t know if it was leukemia or lymphoma or what was happening. And I saw my twin sister, who I’m extremely close to, and just one look at her, I burst out crying and I went running up to her and I said, I get upset still, but I said, “I’ve got blood cancer.”

 And she just gave me the biggest hug and, luckily, she’s a therapist, and she was great. And I can’t thank enough my family and my support system. And today I’ve learned a lot more about the disease. I’m, like you said, at UCSD Moores Cancer Center. I have a fabulous doctor there. And a lot of that has been my anxiety and tension has really calmed down, and I feel like I’m on a great path. I feel healthy, I feel great, and when it comes to time that I need treatment, I’ve got a really good, positive headset now. But that first month was awfully really bad.

Andrew:

I understand. Now Adrian, you had not just issues with being told you had cancer, but you had hospitalizations that came with this, too.

Adrian:

Yeah, so what happened with me, actually, when I got phoned up as well, I mean, that’s interesting that you should have a phone call. I don’t think anyone should hear news like this over the phone. But I got a phone call, I was actually lying in a hospital bed, with pneumonia, basically unable to walk, unable to breathe, and my head wasn’t working properly, I couldn’t really think straight. And it was the doctor from the first hospital that I had gone to in A&E a couple of days before, saying, “Hey, I’ve looked at your blood under the microscope, and,” like with you, she said, “I’m pretty sure you’ve got leukemia. I need to see you urgently.”

And I said, “Well, I’m in hospital, actually.” So yeah, I was dealing a sort of quite nasty pneumonia that took weeks to get on top of, whilst dealing with a three-quarters diagnosis. And honestly, I don’t know if doctors ever watch these, but really, they should learn a lot better than to tell people over the phone. It’s not very fun.

Andrew:

Right, and you’ve had a number of hospitalizations, but you’re doing well now.

Adrian:

Yeah, that’s right. Unusually, I had surgery. I had two operations on my tonsils, which can happen with people with CLL, but perhaps it’s a bit atypical. Mine was trying to choke me to death. I was losing my airways at one point.

But since I’ve had the FCR, my lymphocyte count is way down now. It’s well below one. Obviously, it was only a couple of weeks ago that I had the last one. But I’m back in watch and wait and worry, really. I’m very aware that particularly that first three months after the FCR will probably help to indicate whether it’s taken or not.

Andrew:

And Jay, so you’ve managed your CLL with your diet and it’s worked for you. So, when you say macrobiotic diet, what does that mean?

Jay:

Okay, well it means, just like doctors have a different philosophy and they’re still doctors, doing the same type of thing. Macrobiotics can mean a lot of different things, but my point of view is about lowering the impact of your CLL, because I’m doing this because of CLL, and being able to live as healthy a life as you can.

But macrobiotics is basically a way of eating, a way of preparing food. It’s a healthy diet. It’s an anti-inflammatory, plant-based diet, and some fish. And you can’t just do macrobiotics half way. You have to go for making it a lifestyle, and that’s what I do. So, I don’t eat meat, which I’m fine with other people eating meat, but for me, it’s my choice not to. I don’t eat poultry. I don’t eat dairy, and I try not to eat a lot of wheat. But the bottom line, blood cells have to be made somehow, and they’re made as a result of the way you eat and the way you exercise. Believe it or not, that impacts blood cells.

So, unless someone’s ready to study me personally, I’m just going on faith here, but 38 months into it, all my blood counts have also improved, and my white blood cells have remained not only stable, but they’ve actually gone down, so I’m very pleased.

Andrew:

Okay, so I wanna give credit to Esther Schorr, my wife of how many years now, Esther? 30?

Esther:

It’s going on 34.

Andrew:

34 years. Esther and I have always exercised together, ran last night. Been living with CLL 23 years now, been treated twice: FCR, and then later with Obinutuzumab and high-dose steroid about a year, year and a half ago, and I feel really good. And our diet, again, Jay, we don’t know if that’s the thing, but now we’re really not eating red meat. We’re eating fish, chicken, not even a lot of that, fruit and vegetables.

Esther:

As organic as possible.

Andrew:

Point is, nobody’s studied us, but we do feel good. And I think all of us want to say, what can we do for ourselves. I wanna ask Esther, though, what we do ourselves is part of it. But what about the role of a care partner, whether it’s a wife or best friend or adult children? What would you say to care partners?

Esther:

Well, I just wanna back up for just a second and acknowledge what I just heard from all of you, and especially you, Maggie, because of the very high emotional impact. I just wanna acknowledge that for care partners with a loved one who’s diagnosed with something that feels and may well be very serious, the emotional impact can be as severe for your loved ones as it is for a patient in a different way.

Like, you feel helpless. I know that when Andrew was diagnosed, my feelings of, “Oh, my God, what can I do to help with this situation, because it’s purely a medical thing. I’m not a medical person. What’s the role of me as, I call myself a care partner.” And so, what I would say is over the years, what I’ve felt was the best way for me to support Andrew through a lot of ups and downs, it to be an advocate. Be a researcher and find ways for me to keep my head straight, when he happens to be a very practical kind of guy. But if he were somebody who was also very emotional, I think the role would be to be the voice of reason, the voice of practicality, looking at what dietary options there might be, what treatment options there might be.

Be actively involved in the discussions with the healthcare team, so that there are two sets of ears that are hearing the same thing. I’ve just felt like I’ve been the partner advocate for Andrew, and a pair of listening ears that’s digesting what’s being said, processing it, and giving him back, hopefully, an educated opinion about direction to go.

So, I don’t know if that answers your question, Andrew, but I think it’s a lot of advocacy, and being the person that’s gonna look at what are the more holistic supplementary things that can be done to support somebody who’s made a treatment decision. Let’s put it that way, because ultimately a patient has to decide. My body, my decision, with my doctor. But being a care partner is also about lending some sort of an educated perspective, and saying, “Here are some other things that we might consider doing together, or how I may be able to help you.

Andrew:

Maggie, do you draw on the family? You ended up telling them all. Do you draw on them for support?

Maggie:

I really do. My husband has been amazing. He’s kind of like my steady rock, and he goes to every doctor’s appointment with me. He transcribes everything that’s said in the doctor’s appointments. He researches with me on the internet, so that’s an amazing – My twin sister and her husband are both therapists and have helped walk me through that.

My children are very understanding. They were very frightened when I first told them, and I try to give them more and more information. I’ve given them the ling to your website. That’s helped them immensely. So, and then I’ve told a close group of friends, too, and they’re very supportive. Not many of them really understand the disease, but they’re very supportive. So, for me, it’s critical I have that support system. 

Esther:

Andrew, I was just going to add one other thing, that there isn’t always a family member that’s available. I just want to acknowledge that sometimes, somebody doesn’t have a partner, or a sister, or a father, or an adult child, but as a care partner, I would encourage anybody that’s dealing with this kind of thing, find somebody in your life, even if it’s a nurse, or it’s a counselor, or somebody that is going to take on that role for you, because it’s really important.

Andrew:

So true. Now, Adrian, you have five kids, right?

Adrian:

Yes, that’s right. The youngest is 12 and the oldest is 22, so that’s quite a range.

Andrew:

How have you gone through this? I mean, you probably have an active family life. You’ve had hospitalizations, you’re going through FCR. So, talk about treatment, family life, support –

Adrian:

It’s funny, our family life becomes a little bit different. I had to have a word with my 12-year-old, to make sure he understood that words like cancer and hospital are not so normal. But a lot of other families, and a lot of other kids, and so he could really freak out his friends, perhaps, by talking about, “Oh yeah, my dad’s got cancer and he’s in the hospital again.”

It becomes almost a bit of a matter of fact when you go into hospital so many times in a short period of time. Sometimes I have to say to my children, “I’m going off to get an infusion,” and they’re like, “Oh are you staying in hospital tonight?” I said, “No, no. The plan is for me to come home.” So yeah, it becomes part of family life, to a certain extent. Obviously very difficult at the beginning, and I think sometimes very difficult as it goes on and on.

Actually, in many ways, watch and wait was almost harder than when I was being treated, because at least they see that there’s a problem, and that the doctors are doing something about it. It can be quite hard, I think, for family life to continue when one member is really struggling to keep up. Like on the holidays, for example, I sit in the car while they’re all climbing a hill, and all of those kinds of things. It is tough, but I think people are resilient, and I would certainly say that the support from my family and friends has been amazing really. 

But I would also say, I think for me personally, it’s been really important to get some support from outside the family as well, and actually professional support. So, for me, I certainly struggled a lot with adapting to the diagnosis, particularly during watch and wait, where you feel like you’re in a form of purgatory. Too sick to work, too sick to enjoy life, but not sick enough to need treatment. And so, that was hard to deal with, and I think my poor wife. You know, it’s important that I had another outlet to talk to about that.

Andrew:

Yeah, Esther and I did that as well. Jay, I want to ask you, so you, right now, are doing well, but you have – You live on Long Island, but you have a world-famous specialist in New York City that you check with. How do you think about the future, knowing that CLL can change or evolve? And so, diet exercise is working for you, but it may not always. No one knows. 

Jay:

I feel this way, we have to do some of the heavy lifting for our doctors, because they’re so well intentioned, and they can give us miracle drugs, but if we don’t do our part, the disease will just progress, I think, that much quicker. And if I ever needed, god forbid, to be treated, I would do it. And I think it has to be an integrated approach, using the best that modern medicine can offer, and I think we have to do our part. And I think too many people just kinda give up at the beginning. They say, “Uh-oh, this is cancer,” and they get paralyzed, like they’re caught in the headlights. So, I think CLL is a bully, and I do my best to bully it back, and I’ll keep doing it as long as I can.

I hope that I can get – I was hoping to get ten years of watch and wait, and so far it’s been a little bit less than four, and if I can do this forever, great, and if I can’t at least ill make my body so strong that, hopefully, when it comes time for treatment, Andrew, I’ll have enough strength to wind up surviving.

Andrew:

And Maggie, what about you? What if it gets to the point where your physician here in San Diego says, “You know, has changed, your white blood count is changing, you’re developing various symptoms. We can get lymph nodes and night sweats and things like that. And it’ll be time for treatment. Are you prepared for that?

Maggie:

I think mentally and emotionally, I’m fairly prepared for that. I’ve also tried to be as involved as I can in other – Leukemia Lymphoma Society, and the CLL Society, and listened to a lot of podcasts from CLL experts. 

And I have such faith and hope in what’s happening in trials and current treatments, that I know that at some time – my prognostic factors are probably five years, and I’m doing everything I can, similar to Jay, and trying to stay healthy and eat a healthy diet. But when it comes to that point in time, I’ll raise my hand for a trial or go on the most current medication.

Andrew:

Now Adrian, you mentioned that you had severely inflamed tonsils, where you almost couldn’t breathe, and you said that’s kind of an atypical result of CLL. And you’re a physician, so I’d love your perspective on this. CLL can affect different people in different ways. What do you do as far as communication with your healthcare team, trying to sort out what’s related to the CLL and what isn’t? What’s related to the medication you’ve had and what isn’t?

Adrian:

It’s tough, isn’t it? Actually, in that instance, I was unable to sleep because every time I started to sleep, my tonsils did completely block and choke me, so I had a fair few days of not being able to sleep. But when I was admitted to hospital, losing my airway essentially, there was quite a bit of debate, because the EMT doctors looked at me, and they said, “Those tonsils don’t really look that inflamed. They don’t look that angry. We think this is not a sort of tonsillitis-type picture. This is not something typical. This must be more of a hematological problem. The guy’s got cancer, give him some chemo.”

The hematologist came and they looked at me and they said, “Well, the thing is, it’s only really the tonsils growing. The other lymph nodes, I don’t think we could even feel at that point, although they did grow later on, and his lymphocyte count is really low. Actually, they did say, “Could this be a transformation? It could be high-grade. So, there was a whole lot of debate between even those in that situation, about whether to operate

And obviously they did try some steroids for a few days, and c they didn’t shrink, they had no choice but to go in and operate, so that I could swallow again, and breathe again more easily. But that kind of thing has happened on other occasions, and when you get an infection, would you have got it anyway? Perhaps not, with my pneumonia. I mean, that clearly seemed to be related to my CLL in the first place. And I guess for me, personally, I just got to the point of going, “Well, we don’t always know whether it’s directly related or not.

I’ve got back pain. I’ve got some benign tumors in my back. We thought maybe that was causing it. Or is it the CLL growing it the bones cause it, or is it something completely unrelated, just ligament damage, or discomfort from the fact that I’ve been lying around for two years really, not mobilizing enough, not doing exercises despite my physio’s best efforts to get me going. You know, I don’t know, and I guess at the end of the day, we just have to look at the symptoms, really. It becomes symptom management and investigation.

I think it’s very important not to ignore new symptoms, because you never know what’s going to happen. I’ve heard of people having infections in bones and all sorts of things. Whenever I get a new symptom, I have to go to my GP, or I go to my hematologist, and we go from there, really. We investigate and we figure out what’s going on, or try to, at least.

Andrew:

Well, I wanted to talk about that very good point. And Esther goes with me to the doctor, and she knows, I say, “Well, I’ve got these little dots on my skin. Is that related to the CLL, or whatever?” Some things they know, because I call if I have a chronic cough or certainly feel like I have a chest infection, but other things, I don’t always know, but I always bring it up. What about you, Jay? You apparently, were not feeling well for years.

Jay:

Yeah, well, the funny thing was, I thought I was doing great. I was 193 pounds of muscle. I studied the martial arts for 20 years. I felt great, but I was 50 pounds overweight, so you just don’t know.

I thought I felt fine. I thought that occasionally getting fatigue was part of getting older, but when it got to that point where I couldn’t walk around the block without gasping for air, sooner or later you figure something is wrong. And then you take action. But the truth is, we’d all be better off, I think, if we understood the cues our body is giving us, but I didn’t at the time.

Andrew:

Right, and often the indication for treatment, Maggie, you’ve had various blood tests, but from what the doctors are telling us now in our programs, is are you having night sweats? Is your spleen enlarged? Do you have lymph nodes? Maybe do you have these kinds of things that Adrian

[00:27:59]. Certainly, do you have pneumonia, or recurring pneumonia?

All these things could be indications of treatment, not just the number of your lymphocytes. So, it requires communication. So, do you have really good communication with your doctor now, Maggie, and you feel you have a trust relationship, and that gives you confidence?

Maggie:

I did when I first met with my CLL specialist, I thought, “Oh, it’ll be a 15-minute meeting.” He spent almost two hours with me and talked about everything that was going on for me. If I thought it was a symptom, we discussed it. For me, probably a month before I was diagnosed, I started to get really bad sinus headaches. And I talk to my intern about this. I said, “Could it be the CLL?” And she said, “No, no, that’s ridiculous.” And I talked to Doctor Choy and he said, “Very likely, since this is an inflammatory disease, and this can affect your sinuses and it can affect your respiratory system. Any place that you can carry inflammation in your body.

And I felt like he really listened, because he said, “Here, try these different over-the-counter remedies,” and it’s really, really helped me a lot. But I do prescribe talking to your doctor, telling him anything. And I’m at that age of a female where menopause happens and you get hot flashes, but mine have continued. I’m over 64 now, and I talked to my CLL specialist. He said, “These are probably CLL-related.” So, even though I would like them to be menopausal hot flashes, I do believe they’re CLL hot flashes. I don’t have the drenching night sweats, but I feel like there’s a furnace inside me that just kind of turns on, and it wakes me up at night.

So, I’m trying to deal with that. I keep my room, my poor husband, at around 60 degrees at night. I’ve got two fans pointed right at me, and it helps me get through the night. So, these symptoms are –

Andrew:

But you have that [inaudible – crosstalk] [00:31:18] with your doctor to try to figure out what could be related to the CLL, and at some point, maybe, part of the indication for treatment.

Maggie:

Exactly, and if these get too bad, I’ll say I’m ready.

Andrew:

Well, I’ve been living with CLL for a long time. I have a chronic cough sometimes, there you go. One of the things, though, that we were worried about, and Esther was part of these discussions, is sinus infections. And we were talking about sinuses a minute ago. And so, Dr. Kipps, who’s another doctor at UC San Diego, he said, first of all, you can be prone to infections with CLL, and in your sinuses, the bacteria can have what he called a pool party. 

So, what do you do about it? Do you just – antibiotics all the time? He said, “You should try a nasal wash, every day.”

Esther:

A netty pot.

Andrew:

A netty pot, or there’s some other ways. You can get a little squeeze ball.

Adrian:

Yeah, but this is a little bit more, sorry this is not supposed to be product placement, but this is a bit more pleasant than a netty pot. I just spray this. It’s a sort of A-line spray. I find that really, really good.

Andrew:

Right, and I have something similar, so I went to the local pharmacy. There’s a little bottle you can get, and you put little saline packets in it, and warm water, and it has a filter, and every morning, I do a nasal wash and guess what, no infections. Now, I’m doing other things, as well like I get immunoglobulin once a month, which my doctor thinks is important for me. But the point is, it’s what I can do, and it’s like what you can do Adrian. This is something we can do. We may be prone to nasal infections that could be respiratory infections, could be pneumonia, which is bad news for us with CLL. And you’ve had pneumonia, right, Adrian?

Adrian:

Yeah, that’s right, and throat infections, yes.

Andrew:

I’ve had it, too. So, this is serious business for us. So, these are things, whether it’s diet, whether it’s exercise, whether it’s communication about hot flashes, all of these things. And Esther, when I speak up about something, you normally say, “Call the clinic,” Right?

Esther:

Yes. And the calling the clinic is two-fold. One is, I agree completely with everything everybody said, the kind of thing that you’re doing, Jay, makes perfect sense. You’ve studied it. You’re taking an approach.

The only caution that I would give Andrew, and especially since I made a mistake early on of doing something we shouldn’t have done, is don’t take on some kind of a supplementary or what you think is a complementary remedy, because you’ve read about it, because five people said it works for the, That if you’re gonna take something on, at least discuss it with your doctor. So, I’ll just tell this quick story, when Andrew was first diagnosed, one of the things we did, besides finding a specialist, we went to a naturopath. Remember this, Andrew? And he said, “Oh, you need to take mega doses of,” I don’t know what it was, Vitamin A or D, it was one of the vitamins.

And then when he finally got to see the specialist at MD Anderson, he said, “So, what supplements are you taking?” and he said, “Well the one thing I am doing is, we’re juicing,” which was okay, “But I’m taking this mega dose of whatever.” And he said, “You know, I think you should probably stop that, because there’s studies that have recently come out that say that it could cause the proliferation of CLL cells. It was like “Eh.”

So, I just tell the story, because the kind of thing you’re doing, Jay, sounds like you’re done a lot of research. I’m assuming your physician knows about it. Those kinds of things are good, to compliment whatever else is going on, but to make sure that he’s on the same page about whether there’s some potential downside to it.

Jay:

Absolutely. I’ve gotten some – somehow, I’ve gotten some kind of notoriety, you know, and that’s not good or bad. But I’ve had an average of two emails or phone calls a week, people literally asking me, “What can I do?” So, I’m a year away from becoming a counselor, a macrobiotic counselor. So, I’ve been studying this for four years. So, I tell him, from a patient’s perspective, and some of the things they’re doing are just crazy.

And I literally say, “Look.” Always preface it with, “Discuss this with your CLL specialist. And if you are doing something, chart your results, and see, on a quarterly basis, how your liver function is doing. When I was first diagnosed, my liver was, my ALT was 92, which is 50 points too high. Within six months, it went down to 30, which was normal. I had diverticulosis. I had acid reflux disease. That’s all gone now. But it didn’t happen over night, and you do things gradually. And every step you take, you check with your doctor.

And candidly, I have a wonderful doctor. I don’t want to mention his name, because I don’t wanna – But he is the tops in my opinion. And he does not necessarily believe that what I’m doing is going to affect my CLL that much, but what he does like is the results. He likes seeing me healthy. He likes seeing my blood counts so good and stable, and I don’t expect a medical doctor to believe in the dogma that I believe in. I’m using that medical doctor for his knowledge, and it should be a collaborative-type thing.

Maggie:

That was my point, exactly. Thank you, Jay.

Andrew:

Well said, really well said. Okay, so, we have a medical doctor with us, who’s also – So, Adrian, this whole person thing. What can we do that makes sense for us, that’s not harmful, and how do we partner with our doctors? How do you view it?

Adrian:

Well, for me, personally, when I was diagnosed, I was pretty fat. And I think, as a middle-aged guy, I think quite a few of us have a spare tire. And I resolved, straight away, I was gonna lose that. And I did, and that wasn’t because of the CLL. We do have to be watchful about that. We don’t want to be losing weight excessively fast. 

So, I did change my diet, not as radically as Jay, but for me, I decided to cut down significantly on carbohydrates, and just to maybe do a little bit of intermittent fasting. And I managed, over a number of months, to lose the weight gradually. But what I would also do, was every now and then, I’d have a cheat week, just to make sure that if I lifted the foot off the accelerator of my diet, that I would actually regain the weight, because I didn’t want it to be misconstrued that it was my illness. But if you look at my weight chart over those 60 months of watch and wait, it was gradually going down in a nice, smooth, controlled way. But unfortunately, that didn’t seem to help, for me, personally. It does for some people, but it didn’t for me.

The other thing I tried to do was physio. I’ve been seeing a physio now, most weeks, sometimes twice a week, since November of 2018, because I had this awful sense of the decline in my mobility. I was using sticks as a 46, 47-year-old, and I still do. 

But the physio, I do think, helped a bit, and I think exercise definitely helps, but unfortunately, it’s kinda like there’s a weight pulling you down, and sometimes exercise isn’t enough. But I tell you what, when I was stuck in my hospital bed, unable to get out, this was in November, after my first FCR, unable to get out safely, it was my physio that taught me some bed-based exercises that I think helped me to get out. One of my doctors was saying, “You’re gonna end up in a nursing home, Adrian, if we’re not careful here,” because I was just so weak.

And I just did some very simple things, lifting my legs out of the bed, pushing my bottom off the bed, things like that. Things that my physio had taught me. And then, over a few weeks, I gradually started to regain my strength. And that’s where I am at the moment. My physio says to me now, I’m very badly deconditioned, from the last nearly two years now, of being ill. And I’ve got to gradually build myself up, not overdo it, not boom and bust, not do too much, so that I don’t do anything, but gradually try and regain my strength.

And that’s after treatment, but I think sometimes in watch and wait, if you can get as thin as you can, if you can get to an optimal weight, and if you are allergic to foods, certain foods seems to provoke your inflammation, then definitely cutting those out. All of those things, to me, seem to make perfect sense, again, provided you’re talking to your doctors about it.

Andrew:

Right. Boy, this is such great advice. So, Maggie, how are you staying in as good of shape as you could be, knowing that you may have treatment, but you’re trying to do what you can do? What are things you do?

Maggie:

Right, yeah, so I think, and I do believe it’s the CLL, I do get tired in the afternoons. There’s an exhaustion level that I kinda never felt before. I’ve always been extremely fit and extremely active, so I made sure that I try to exercise every day, but I do it first thing in the morning. I’m a master swimmer and I play golf a lot. I do a lot of walking.

And when I was first diagnosed, I did notice that my times were dropping, as a master swimmer. And so, no I’m just not pushing myself as hard. But I’m still in the pool, I’m still working out. I’m still saying, “Hey, you’ve gotta push yourself a little bit, but don’t overdo it. Don’t way overdo it.” So, I stay active and that’s really important in my life.

Andrew:

I’ll just say, pass on one thing. A British doctor, Adrian, who you may know, John Gribben, is one of the top CLL specialists. He said to me years ago, before I had FCR, and Esther and I would run every day, and I probably couldn’t run as far as fast. He said, “After you have treatment, you’re probably gonna feel a weight is lifted from you.” So, that’s what I did. I mean, I did many of the things you’re talking about, Jay, as far as diet, exercise, but in my case, when it came time for treatment, which was a high white count, swollen lymph nodes and enlarging spleen. 

When we knocked the CLL back, Maggie, I did feel I had more energy. And just a couple of other things I’d mention, we were talking, and you were great about it, Jay, saying what’s working for you, and what you’re studying. But everybody’s saying check with your doctor. Esther, do you remember when you read something online, not just about the juicing, but distilled water and we had distilled water, and we lived in Seattle, where Starbucks come from, and you said, “Stop drinking coffee.” And I stopped drinking coffee.

Esther:

Well, that speaks to what happens to a care partner. I have to be honest, mia culpa, I felt no control over what was happening to you. So, I started to read everything I could find, and at the time, there was a book called spontaneous healing. The gentleman who wrote it was very well known national and internationally. 

Seemed to make sense. None of it was super extreme but living in Seattle and not drinking coffee was pretty extreme. So, I had to learn along with you, Andrew, that you have to – there’s a balance. You can’t stop living. You can take an approach like Jay, which, for him, a disciplined, very disciplined approach to eating is working for him. For you and I, what seems to have been working is good, healthy diet, exercise, laughing a lot, travelling, doing those things. That’s working, seems to be, knock on wood, working for you. And as a result, I feel like we’re working together on this. Yeah, it’s like, there’s a point where you don’t want to stop living over it.

Andrew:

Right, right. One other point, I mentioned that I’ve had CLL treatment twice, although separated by 17 years. And Adrian, post-FCR, I hope you have a long, long remission.

But we’re blessed with some very modern treatments now, and that’ll probably be discussed with you, Maggie, and should you need it, you, too, Jay. Lots of new thinking and lots of research, and several of us go to doctors who are in the lab as well as in the clinic.

And so, I feel really confident that if we do what we can: diet, exercise, emotional well-being that you were referring to, specifically, Adrian. If we get our head on straight, and take back control, with our partner, Esther, or whoever it may be for you, that we’ll be in the strongest possible position to live a long, long life. Maggie, do you feel that way when you think about it now? You’ve watched all these podcasts and videos. Do you and your family feel you’re gonna be around for a long time?

Maggie:

Yeah, and I’ve always said that CLL [00:45:10] under the ground. So, I’m gonna be out there on the, you know, the fullest life, the happiest life, and just stay as active and engaged and involved, and like you said, laughter is really important through all of this. When I laugh, I totally forget that I have this CLL, and it works for me. So, that’s my path.

Andrew:

Okay, so for final comment, Jay, you’ve been living with this, doing what you can. What would you say to people, whether they’re newly diagnosed or wherever they are, what advice, knowing that people are different, and you’re gonna be a counselor too? So, tell us what words of wisdom you have.

Jay:

Words of wisdom is this: I said it earlier, you have to do, you have to take some responsibility for your general health. And I think it’s just really irrefutable, that if you do things like watch what you eat, you try not to be too stressed, you make an occasion to walk a few times a week, you’re just going to feel enabled. You’re going to feel healthy. And you can’t give up.

You have your CLL life, and you have your general health, and they can’t be separated. You can’t have one without – You can’t have good CLL health, I believe, unless your body is very strong. So, do the best you can and take it slowly, but every day, set a goal to do something that might make you feel healthier, might make you feel less depressed. Live life, enjoy life, but don’t equate taking personal action and responsibility for not enjoying your life. To the contrary, you’re helping yourself live a longer and healthier life. That’s what I would say. 

Andrew:

I’m just gonna tell you one quick story. Esther and I went jogging at the end of the day, and a woman probably in her 20s ran past us, and I started speeding up. We didn’t catch her, but I was running faster, and Esther said, “You’re running so fast today,” and at the end I said, it was affirming for me that I could do it. That I could chug along a little faster was affirming. It was something I could do in one day that helped me.

Jay:

Andrew, you look great, so I have to ask you, seriously, I haven’t made you crazy and put you on a special diet, but what do you do besides running?

Andrew:

Just running, and this afternoon is going to be going on a bike ride. And I’m gonna try to go up the hill over here. And then maybe get some coffee, Esther –

Adrian:

But hopefully, not a latte, Andre. No lattes, yeah? No lattes.

Esther:

We get them with soy. We get it with soy milk.

Adrian:

It’s the sugar. You don’t want the sugar in the latte syrup, you know?

Esther:

Right, right.

Andrew:

So, I do that, but I think it’s a matter of, after 23 years of CLL diagnosis, just live your life. You said it Jay. And Maggie, for you, you’re playing golf, you’re laughing. You picked yourself off the floor after the diagnosis. You have everybody try to understand as best they can, and you go be yourself. And Adrian, you too. You’re trying little by little, to get back to equilibrium, right?

Adrian:

No, that’s right, and it’s about looking at the positive things. I mean, I think we have to accept sometimes it’s gonna be negative stuff, but there’s also positive things. So I’d gotten to the point where every night I slept outside of a hospital was a real gift, at one point. And just, the ability to, I don’t know, cook a meal for the family was a huge step for me. Things like that. And being grateful for things, and, as you say, moving along that journey and hopefully, heading in the right direction rather than the wrong one is always, always positive.

Esther:

I think a lot of this, I’m listening to this, a lot of it is attitude. Jay, you asked Andrew what is he doing, and I watch him every day. And he’s just two steps ahead of everybody. He’s just positive attitude, and whatever’s gonna happen, he’s gonna take as much control as he can, he’s gonna rely on his support system and his doctors, and he just keeps moving ahead. And I think that makes a big difference.

Jay:

Yeah, and I think the fact that you two, Esther and Andrew, do so much to try to help people, I think all of us would agree that if we’re trying to help people, it’s a wonderful thing, and we feel blessed and empowered. So, as bad as CLL is, and I hate having this disease, I think it’s a real bully, in my opinion, I’ve become maybe a more understanding person. So, it’s not all negative, you know. It’s mostly negative, but there are some bright things about it.

Andrew:

There really are, and so I appreciate every day. Maggie, you’re at a beautiful golf resort, La Quinta, so you’re just gonna go swing away now, right?

Maggie:

Right, in about 15 minutes, I’m leaving for the tee box, so it’ll be fun.

Andrew:

Well, I wanna let – Just, thank you for being part of this CLL patient café. I wanna thank our supporters, ABVI and Pharmacyclics, who have had no control over anything we’ve said. This is very free-wheeling, but we hope it helps everybody. Maggie Buckenmayor, I want to wish you all the best with your golf game, and wherever your CLL journey takes you. And don’t freeze your husband out, with the fans and the cool temperature.

Adrian, all the best as you continue the FCR and just hopefully –

Adrian:

No, I’m done with CFR. I’ve had my six. That’s over, mate. No more for me. I’ve had my six. Never again. The UK will pay for the newer drugs for me the second time around, so if I need anything else, it will be one of the newer drugs.

Andrew:

All right. And so, may you go on and get your walking. You’re gonna be jogging with me and jay before long, okay?

Adrian:

I’ll do my best.

Jay Blatt:

You’re gonna be carrying us, he means.

Adrian:

I don’t know about that.

Andrew:

Jay, thank you so much and all the best with you, and I’m gonna read up more about what you were discussing. And Esther, thank you for being my partner all these years, and all the partners out there, wherever you are watching, thank you. You’re a blessing for all of us, and we really appreciate it.

Jay:

Thank you, Andrew and Esther and everybody else. 

Maggie:

Thank you guys.

Adrian:

Thank you guys.

Andrew:

I’m Andrew Schorr, from Patient Power. Thanks to the Patient Empowerment Network, for putting all this together, and thank to our sponsors for helping us, so we can do this. As I like to say, remember, knowledge can be the best medicine of all.

Barby Ingle – What Advice Do You Have For Someone Who Is Newly Diagnosed?

As the president of the International Pain Foundation, a best-selling author, and chronic pain advocate, Barby Ingle shares her advice for the newly diagnosed. For all our A Conversation With… videos please click here.

Barby Ingle – What Advice Do You Have For Someone Who Is Newly Diagnosed? from Patient Empowerment Network on Vimeo.

Ask the CLL Expert – Dr. Richard Furman

Ask the CLL Expert – Dr. Richard Furman

CLL specialist Dr. Richard Furman, Director of the CLL Research Center at Weill Cornell Medicine, answered patients burning questions live in this installment of Ask The Expert.


Transcript

 

Andrew Schorr:

And hello.  Greetings.  I’m Andrew Schorr in southern California, San Diego area, and I’ve been living with CLL for 22 years, so I’m vitally interested in today’s Ask the Expert session, this Patient Empowerment Network program.  We want to thank PEN, as we call it, and also the financial supporters of this program, AbbVie Incorporated and Pharmacyclics, although reminding you that they have no editorial control.  You’ll be hearing from our leading expert in CLL in just a minute.

Over the next 30 minutes or so we’ll get to as many questions as we can.  Remember not to make it too personal.  Let it help everybody in the community.  And also discuss what you learn with your own CLL provider so you get the treatment that’s right for you.  Okay.

Let’s meet our expert joining us from New York City and Weill Cornell medicine, and that’s Dr. Richard Furman, who is the director of the CLL research center in New York City at Weill Cornell.  Dr. Furman, welcome back.  Thanks for being with us.

 

Dr. Furman:

Thank you.  It’s my pleasure.  Thank you for having me.

 

Andrew Schorr:

Okay.  We have lots of questions.  One of them that somebody wants to know about is, first of all, if they’ve been‑‑maybe this is an easy one.  If they’ve been diagnosed with SLL, small lymphocytic lymphoma, is that the same as CLL and what we’re talking about with CLL applies to them?

 

Dr. Furman:

So that’s a very important question, and this is one that I actually think is very indicative of how little we used to know.  So in 1993 we actually had a diagnosis of CLL, chronic lymphocytic leukemia, and a diagnosis of small lymphocytic lymphoma.  And we had patients that were diagnosed with SLL if they had a lymph node sent to the pathologist, or they were diagnosed with CLL if they had a bone marrow biopsy sent to the pathologist.

Clearly, we knew that patients could only have one diagnosis and not two, so in 1994 with the new lymphoma classification system the term was actually changed to be CLL/SLL.  So they really are exactly the same entity.  We don’t actually refer to differences anymore, and the whole, the whole individual‑‑the whole disease should be called CLL/SLL.

Now, an important thing is sometimes people require having a lymphocytosis to meet the definition of CLL, but the truth is both conditions are exactly the same.  Both should be treated exactly the same, and there should be no difference based upon having a lymphocytosis.

 

Andrew Schorr:

Okay.

 

Dr. Furman:

Why this is most important, let me just add, is that there are sometimes people will be diagnosed with stage IV SLL and it’s very important to recognize that these stage IV SLL patients unless they have thrombocytopenia below 100,000 like the Rai stage would indicate really are not stage IV.  So the lymphoma staging system would automatically make them stage IV, and that’s certainly not correct.

 

Andrew Schorr:

Okay.  Good point.  All right.  Here’s a question we got in from Julia and Betty and Shelly and Mark.  They all asked a similar question.  They’ve been on Imbruvica for five years now with success.

Is it working for most people, and what are some reasons why it doesn’t work for everyone?  And then what treatment options do you recommend if they relapse on Imbruvica?

 

Dr. Furman:

So right now I think the most important, there are a lot of prognostic markers available for CLL.  At last count we’re probably up to 115.  What’s most important is in 2018 what are those prognostic markers that really are relevant to the patient, and really as long as you stay as CLL you’re going to be able to have your disease very nicely controlled with our current agents and our novel agents.

So there are certain things that do indicate patients are likely to progress on ibrutinib, not likely progress must but who may progress, and people who might need something more, and that’s where a lot of our current clinical are research is focused.  So patients who have a risk of developing a Richter’s transformation or patients who have a likelihood of developing a BTK mutation that might generate resistance to ibrutinib are the two groups of people that we worry about most.

17p deletion is probably the most important predictor for predicting those patient outcomes.  There are other things that are predictive as well like having a NOTCH mutation.  Those are all readily obtainable prognostic markers that allow us to determine who’s at risk and who’s not at risk for progressing on ibrutinib.  If you don’t have 17p deletion or NOTCH1 mutation you have almost a 99 percent chance of being free from progression at five years on ibrutinib.  And it looks like most of the people who are going to progress will progress within five years.  So I think making it to that five‑year mark is really very‑‑is the most important thing.

 

Andrew Schorr:

Okay.  So if you do progress, what then?

 

Dr. Furman:

So fortunately we have a lot of great agents.

Venetoclax works very effectively in patients who progress on ibrutinib, generates some very, very deep responses and very long‑lasting responses.  So that’s certainly one option.  Another option is to be treated with a PI3‑kinase inhibitor.  So we have idelalisib and duvelisib now approved.  We will shortly have umbralisib approved as well as a novel agent.  We also have a whole array of other agents coming down the pipeline looking specifically at means for progression on venetoclax.  So we have an MCL1 inhibitor which targets the protein that’s likely responsible for resistance to venetoclax.  So all these things are actually currently in clinical trials and certainly will hold a great deal of promise.

 

Andrew Schorr:

Okay.  Here’s a question we got in from Jeff.  He says, for young and fit patients with relapsed disease what are the best combos now and coming.  And I suspect maybe Jeff had received FCR, so if he relapses after FCR, what about that?

 

Dr. Furman:

So my belief is that these novel agents should always be used up front, or if you’ve gotten chemotherapy up front they should be used immediately at relapse.  A lot of patients and physicians have the idea that there’s a benefit to holding back until you really need something, but I believe putting our best foot forward first is always the best approach.  So I always recommend going forward first with BTK inhibitor therapy, followed by venetoclax or venetoclax followed by BTK inhibitor therapy.  And I think so in a patient who has relapsed after FCR it will be ibrutinib or acalabrutinib.  In a patient who has relapsed after acalabrutinib and ibrutinib would then move on to venetoclax.

Now, what I’m really very excited about is the possibility of the combination of either BTK inhibitor therapy plus venetoclax or PI3 kinase inhibitor therapy with venetoclax.

You know, both of these combinations really take advantage of the synergy that happens when you take a BCR antagonist like ibrutinib, acalabrutinib or idelalisib and duvelisib and combine it with a Bcl‑2 inhibitor.  And it really sort of enables us to get very, very deep remissions with actually as short as just 12 months of treatment.  And so those are what we’re currently testing in patients right now and what I hope will be the frontline treatment for patients in the not‑too‑distant future.

 

Andrew Schorr:

Now, one of the things people wonder about is if you take these big guns and put them together could you, like you’ve been able to do with FCR, stop treatment or take a break from treatment at some time.

 

Dr. Furman:

So I’m a big believer in that if something’s working and you’re tolerating it well that we shouldn’t mess with it, but we are currently studying two different processes with relationship to the ibrutinib plus venetoclax combination.  So we’re taking patients who become MRD negative on the combination after 12 months and randomizing them to either just get ibrutinib or to get placebo.  And so that’s going to give us information as to whether or not it’s safe to stop patients on the combination and treat them with nothing long term.  We’ll see, one, how many patients relapse, and hopefully none, and, two, if they do relapse whether or not we can then restart ibrutinib and control their disease.  So this will provide us that important question as to whether or not we’re giving up something by discontinuing the therapy.

We’ll have as our comparative those patients who got ibrutinib plus venetoclax for 12 months and then just remained on the ibrutinib.

And so that will sort of be the patients who will continue on with their therapy, and then the other half will be patients who have discontinued all their therapy.

My belief for going to venetoclax is that you’re going to get almost all of the bang for your buck out of the first 12 to 24 months, so continuing it is unlikely to yield an additional benefit, so I think stopping it is safe.  But, once again, these are the studies that will provide us with those data.

 

Andrew Schorr:

Okay.  Now Maureen sent in a question where they responded to venetoclax and rituximab and they wondered what about testing for minimal residual disease?  They don’t have any lymph nodes or anything, but is that then appropriate to do a MRD test to see how deep the remission is?

 

Dr. Furman:

So the real important question should be whether or not that’s going to impact upon clinical management.

So MRD testing is easy, it’s noninvasive, it’s a peripheral blood test or a bone marrow biopsy, which I guess is only relatively noninvasive, and the information though is really not going to be of use.  So if you’re taking a patient who’s on ibrutinib and you’re going to continue the ibrutinib knowing the MRD status won’t change anything.  Likewise, if you have a patient who’s on venetoclax, who’s going to get a year of venetoclax on trial and then stop, knowing the MRD status won’t change anything as well.  So currently there’s no real reason for doing MRD assessments in patients except for just the ability to know.

Now, one day there’s some modeling that suggests that the time it takes you to reach MRD negativity is half the time you need to be on a substance, an agent, before you can actually claim to have a deep enough remission that you won’t relapse.  So we may one day say if you’ve been on ibrutinib for five years and became MRD negative, then 10 years of ibrutinib is enough and you can stop.  But that’s currently just theoretical and based on mathematical models.

 

Andrew Schorr:

Theresa wrote in, she said, my husband is being treated with acalabrutinib for five months.  He’s doing well, but should he have some sort of testing to know whether he will develop some sort of resistance in the future?

 

Dr. Furman:

So that’s a very important question, and the answer really is, you know, testing for it now isn’t going to be able to change anything.  Right now we would still continue the acalabrutinib until we see signs of clinical progression.  There’s some early data emerging from Ohio State where they’re doing PCR testing on all the peripheral blood of patients, on the peripheral blood of all patients to see whether or not they can detect any of these mutations that lead to resistance.  The problem is you’re still going to continue the treatment until you see the clinical relapse.

And, two, is you really‑‑you know, in essence when you look at the data that suggests that 92 percent of patients who get ibrutinib as a first‑line therapy will remain in remission at five years you’re talking about treating‑‑or testing a lot of people for very, very few people that will likely benefit.

 

Andrew Schorr:

Okay.  So if you have a question now, send it in, cll@patientpower.info, and we’ll do our best to pose it to Dr. Furman.  Okay.

So Beth with wrote in and wanted to know is there work going on on a CLL vaccine?

 

Dr. Furman:

So we’ve been playing with CLL vaccines for at least the past 25 years, and a lot of these vaccines were originally designed to be what we call antiidiotype, meaning they were directed against the antibody made by the cell itself.  Unfortunately, a lot of those vaccines have not proven effective, and we’ve gone through a lot of different iterations.  We’re still trying, and hopefully one day we will have better success.

Right now a lot of our current research is focused on not so much the target that the vaccine should be against but ways to make the vaccine more effective.  Things like using PD‑1 inhibitors, which can actually make the tumors more apparent to the immune system.  Or using things that can actually enhance the presentation of the actual vaccine to the immune system, and that includes everything from idelalisib and ibrutinib to other different molecules that may actually make it more readily apparent.

Now, we do also have some new targets like ROR1, which may prove to be very exciting and interesting, but this is still all very far away from anything that will be approvable.

 

Andrew Schorr:

Okay.  Now, here’s a question we got in from Cerisa, said, my understanding is that most drugs aim at destroying the CD20 protein like rituximab or obinutuzumab, etc.

Well, what about, CD9, CD15, CD23?  Are they not as bad as CD20 in CLL?

 

Dr. Furman:

So the thing that’s really important to keep in mind is only our monoclonal antibodies attack one protein in particular, and so we have obinutuzumab, rituximab, and ofatumumab all of which address or target CD20.  CD20 was the first protein targeted for two reasons.  One is it’s ubiquitously expressed on all B‑cell lymphomas, and so it’s a way to identify a target that we can actually generate one treatment for that will work in a large number of people.

The second is it’s a protein that doesn’t seem to actually get endocytosed or down modulated so that it remains positive in the cases most of the time.  One of the problems with some of the other proteins you mentioned is that they’re not expressed on the CLL cell.

So CD3, CD15, those are not present on CLL cells, but they’re also present on a lot of other cells as well.  The key about CD19 and 20 is that they’re only on B‑cells, and we really can actually do okay without our B‑cells.  And so that way the down side to knocking an out all our B‑cells is actually relatively minor.  And the CAR‑T cells, which are T‑cells taken out and reprogrammed, they’re reprogrammed to be directed against CD19 and 20, so in a way they work like the monoclonal antibodies.

 

Andrew Schorr:

Okay.  Lynn wrote in and asked about transplant in CLL, and I’ve met people who have had transplant, so where does transplant fit in now, and does CAR‑T cell experimental therapy maybe supersede that?

 

Dr. Furman:

One well, one of the things that’s important to keep in mind is that CAR‑T cells are still very novel, and the long‑term efficacy is not yet there, so we still need to do a lot of work to help that.

My belief is allogeneic transplants are very effective but they’re also very toxic and dangerous, and I do believe that they should be avoided if at all possible.  So I am very, very selective in who I refer for allogeneic transplant.

With our novel agents like ibrutinib, idelalisib, duvelisib, umbralisib, acalabrutinib, vecabrutinib, zenabrutinib, the list is just rapidly growing, I almost believe that the patient who really needs an allogeneic transplant will only be those patients who have developed or are at high risk of developing Richter’s transformations.  So I really do believe there’s a very limited role for allogeneic transplant at this point in time.

 

Andrew Schorr:

Okay.  And CAR‑T, you’re watching it.

 

Dr. Furman:

I am.

 

Andrew Schorr:

Okay.  Here’s a question that came in from Mike, and this is the bottom line for a lot of people when they’re diagnosed, and he says, what is the current state of treating CLL for those of us watch‑‑he says wait and see patients or watch and wait.  In other words, is it curable?

 

Dr. Furman:

So right now CLL is not curable.  The way that I would love everyone to start approaching CLL is very analogous to high blood pressure.  So we don’t cure high blood pressure, but if you take a pill a day it’s not going to have an impact on your longevity.  And I believe we’re there for about 75 to 80 percent of CLL patients, where they will be able to get a BTK inhibitor or a Bcl‑2 inhibitor or a combination and they will be able to not have to worry about their CLL for the rest of their lives.

There’s still the 20 percent who are going to develop either a Richter’s transformation or a progression on ibrutinib, and those are people we’ve got to figure out what to do differently for.  But all the others, even though it’s not curable, we can definitely I think keep it from having an impact on longevity.

People on watch and wait who are high risk of progressing and developing a Richter’s or progressing onto developing resistance to ibrutinib, we do have a couple of trials that are very interesting right now where we’re treating people at diagnosis with BTK inhibitors with the hope, because they’re so well tolerated and because they’re so effective, we might be able to have an impact and prevent those patients from developing resistance or developing a Richter’s transformation.

 

Andrew Schorr:

Wait a minute.  So are we looking at what has been the traditional watch and wait period differently now and some people will be treated much earlier?

 

Dr. Furman:

Well, we’re just starting to look at that right now in clinical trials.  So this is very early.  It’s for a very select group of people.

We know from the data‑‑so we have seven‑year data coming out at ASH this year where we’re going to have a group of people who were watched and waited and only when they had evidence of disease progression and needed treatment and got ibrutinib, 92 percent of them were still doing well and free from progression at seven years.  So for those 92 percent of patients we couldn’t do any better.  So it’s really just a very small group of patients who need something extra.

So, yes, we’ve proven I think in a large number of patients that BTK inhibitor therapy might be all that’s necessary, but in everyone else, in those 8 percent we do have studies going on to try to answer how to treat them differently.

 

Andrew Schorr:

Okay.  So we got a question early on about somebody who was asking about should he be taking a statin along with his oral therapy for CLL.  So people have other conditions.  So what about that?

 

Dr. Furman:

So if you have hyperlipidemia you should definitely be on a statin, otherwise, no, you don’t need a statin.  I think it’s important to keep in mind that there was a lot of data generated at one point about statins perhaps changing the CD20 expression on the surface of the CLL cells or making rituximab or other anti‑CD20 antibody therapy more efficacious.  I’m not aware of any data that suggests there’s an impact to statins on non‑anti‑CD20 therapy efficacy, and I think the impact on anti‑CD20 antibody efficacy is actually really quite small and unlikely to generate a significant difference.  So I really don’t believe there’s a need to do anything outside of just treating your lipids.

 

Andrew Schorr:

I promised our audience weeks ago that I’d ask you about this.  So should we have flu shots?  Should we have the shingles vaccine?

 

Dr. Furman:

So, absolutely.  Everyone should definitely get a flu shot each year.  And it’s important to get the flu shot each year because the immunity doesn’t persist.  So I actually recommend people get vaccinated either October or early November.  All right?  So any earlier than that I worry that you’re going to have your immunity peak before the height of the season, and later than that you may not actually have sufficient time to respond.

Regarding the shingles vaccine, so there’s a new shingles vaccine called Shingrix which is a recombinant vaccine, so it’s not a live vaccine, and that’s how it’s different than the previous shingles vaccine.  The previous shingles vaccine was an attenuated or live virus vaccine, and CLL patients really shouldn’t have taken it because it really theoretically could have caused shingles.

Now, the old shingles vaccine was also not very effective, so even though the risk was low with low efficacy there’s really no risk/benefit assessment that puts it in favor of doing.

But the new shingles vaccine actually has been tested in patients post autologous bone marrow transplants, so it’s very effective in patients who are very immunosuppressed, and because it’s not a live vaccine it is safe.  So I do recommend it for everyone.

 

Andrew Schorr:

Okay.  Dr. Furman, so you mentioned it earlier and we’ve heard about a lot of programs, the 17p deletion and I almost think of it as the dreaded 17p deletion, but is that necessarily true?  Pam wrote in, she said, I have the 17p deletion.  What are my options?  So first of all, are all 17ps alike, and then what are the options?

 

Dr. Furman:

So the thing that’s most important to keep in mind when we talk about prognostic markers is they’re really just surrogates for clinical behavior.  And so the answer always is going to be if you have historical data that’s always going to trump the prognostic marker.

So someone who is 17p deleted and their disease has remained stable for the last five years, their disease is stable, and the 17p deletion is not going to be what drives the prognosis.  I think that’s very important because when you look at a curve you’re going to see some people doing well and coming off the curve late and some people doing poorly coming off the curve early.  You know, where they are on the curve we have no idea how to predict.  All we know is that they’re on a particular curve.  So prognostic markers tell us about the population, never about the individual.

Now, with that being said, we do know 17p deletion a lot of it, the percentage of the deletion if you’re above 20 or below 20 does have an impact on how you do overall.  So 20 percent and below, they‑‑patients seem to have a better prognostic outcome than the patients who have 20 percent and above.

With that being said, I do have patients who have 17p deletion in 70 percent of their cells and they’re just hanging out doing quite nicely.  So clinical behavior does trump everything else.

 

Andrew Schorr:

Okay.  So, obviously, most CLL patients are older.  I’m 68 now, but I was diagnosed at 45, which is pretty young, but here’s Matthew who writes in he was diagnosed at age 31 and he wonders, he knows a lot of the statistics but he knows it’s mostly older people.  He’s trying to figure out, well, what’s his life going to be like.  So what do you say to younger patients with CLL today?

 

Dr. Furman:

So, remember, we’ve only had these novel agents since 2010, and so what I really do believe is that we really don’t know how good things are going to be yet.  I think things are going to be a lot better than we ever envisioned, so I am quite optimistic about the future.

We don’t know whether or not a 31‑year‑old could enjoy a normal long life expectancy but if they don’t have evidence of or suggestions that they’re going to have particularly aggressive disease and develop resistance to a BTK or a Richter’s transformation, they could theoretically have 40 years on a BTK inhibitor.  And so that’s certainly what my hope is for the future.

You know, all the survival curves that people talk about and all the survival curves that people show really don’t take into account any of the novel agents, and that’s always very important to keep in mind.  So we do some have data.  As I mentioned, the seven‑year data is coming out from‑‑will be out at ASH, and the seven‑year ibrutinib data really suggests almost a nearly flat curve for patients with CLL who get ibrutinib as a front‑line treatment.

 

Andrew Schorr:

So you mentioned over the years the Rai staging system, and Dr. Rai, the grand old man of CLL.

So how does that apply now?  You know, somebody’s diagnosed with CLL, they come across this Rai staging system, but is that meaningful for them today, or are there new ways of looking at it?

 

Dr. Furman:

So the Rai stage really still drives when we’re going to treat patients.  So patients are still treated based on meeting, you know, the classic indications for initiation of therapy.  So Rai stage 3 and 4, namely hemoglobin less than 11 or a platelet count less than 100,000, really are the two primary reasons why people initiate therapy.  We know that if you watch and wait someone until they meet classic criteria and they have disease that doesn’t harbor one of these high‑risk changes we know that they’re going to do extremely well.  So that’s good news.  Whether or not patients who have these other markers should be treated before they have aggressive disease is on open question.

Now, what I really do think that’s also important to keep in mind is, you know, the watch and wait ideology really came about when we had therapies that were not very effective and also were quite toxic.  Now that we have these novel therapies that are far less toxic and highly effective, maybe the bar should move towards initiation of therapy sooner, but that’s still on open research question and not one that we know the answer to yet.

 

Andrew Schorr:

Okay.  And Bob has had the same treatment I’ve had.  He had Gazyva or obinutuzumab with high‑dose methylprednisolone, and now that was, gee, about two years ago, and now his CLL has started to show up in his spleen and his lymph nodes.  He said, well, can he be treated with the same combination again, or might he move to something else?

 

Dr. Furman:

Well, that’s going to depend on a lot of factors.  Most importantly is whether or not there was, you know, he had received the full dose in which case the likelihood is that with just a two‑year remission I would expect that retreatment would generate a shorter remission this time, and the risks associated with high‑dose methyl prednisolone plus obinutuzumab probably don’t outweigh, or aren’t going to be‑‑the risks are going to outweigh the benefits that would be gained if we’re talking about a response that’s going to last less than two years.  So it would probably be better to move on to additional agents.  And, fortunately, we have so many others that I think it would be a way to avoid resistance and also develop‑‑avoid, actually, the toxicities associated with high‑ dose methylprednisolone.

 

Andrew Schorr:

Okay.  We’ll take just a few more questions, and thank you, Dr. Furman, for sticking with us.  And I relate to this one.  So I did have the obinutuzumab and rituximab years ago, and I developed sort of a history of sinus infections for a while and even some chest congestion and I’ve seen other people write in about it.

Do we have the sinus or the respiratory issues from the CD20 antibody or is it something else?

 

Dr. Furman:

So it’s important to recognize that CLL patients, 75 percent of CLL patients will develop hypogammaglobulinemia, and that hypogammaglobulinemia is probably most of the cause of the chronic sinusitis, chronic bronchitis, sort of that‑‑those issues with having the constant drainage.  So I do believe that CLL in and of itself is certainly the first factor that impacts upon that.

The anti‑CD20 by itself will also cause a lot of those problems as well, so the two together are just a double hit.  But we do know that CLL patients, totally regardless of their prior‑‑regardless of their prior treatments will run into those issues.

Now, with that being said, what people often forget is the most common cause of a chronic sinusitis in anyone, even a CLL patient who’s gotten obinutuzumab, is still going to be a deviated septum,  or it’s going to be a blocked sinus channel, so I always recommend and I always insist on all my patients being evaluated by an ear, nose and throat doctor first just to make sure there isn’t something anatomical that could be fixed.

 

Andrew Schorr:

I went to an ENT the other day, and also I’ve been doing‑‑and I know my Dr. Kipps here is urging me, I’m doing the nasal wash and all that stuff, just trying to have sinus hygiene, if you will, working on that.

Okay.  Couple more questions.  Aukie wanted to know, and we’ve talked about this in the CLL world forever, should he be taking a green tea extract?  Is there any validity for that?  What do we know?

 

Dr. Furman:

So my belief is no.  I think it’s important that we have a lot of alternative medicines, medicines that have been studied, and until they show evidence clinically I do believe that it’s important to actually stay clear of them, and there are a couple of reasons why.

So a lot of things work in the laboratory, but that doesn’t mean they’re going to translate into working clinically.  And a lot of the medications that are sold as alternative medications or homeopathic medicines are unregulated and can make claims that aren’t substantiated, but they also don’t have their products necessarily vetted.  So we’ve had a number of examples of people who have been taking a root or have been taking some leaf that’s turned out to be laced with amphetamines.  So a leaf that claims to enhance your energy output, absolutely, if it’s laced with amphetamine will certainly be able to accomplish that.

So it’s important to keep in mind that anything that’s made naturally or that occurs naturally doesn’t actually get regulated the same way as pharmaceuticals.  There was also a change in the laws in the 1990s where anything that was natural didn’t have to be tested and approved by the FDA, so the claims that they make‑‑like Tony the Tiger can say that Frosted Flakes are great without proving that in a randomized controlled clinical trial.  Because it’s a naturally occurring substance it can make claims that aren’t necessarily substantiated.  I do worry about that.  And there are some definite cases of patients coming to harm from taking medication‑‑from taking supplements that weren’t well regulated.

 

Andrew Schorr:

So, as you know, so many of us complain about fatigue with CLL.  What can we do about that?  Is there any medication or something you feel comfortable about as a supplement that could help with that?  Certainly, we’ve been telling people exercise is a good thing and can give you more energy, but what do you tell your patients when they talk about fatigue?

 

Dr. Furman:

So this is actually a very common question, and I really do believe it’s very important to remember that having CLL doesn’t protect you from the things that befuddle the rest of us.  So the most common cause of fatigue in a CLL patient is not going to be the CLL but it’s going to be the same thing that befuddles the rest of us.  So it’s poor sleep hygiene.  It’s not sleeping long enough.  It’s all those things that really should be addressed first and foremost.  So we see a lot of sleep apnea that’s undiagnosed.  We see a lot of people who are just not sleeping long enough.

If we’ve ruled out everything else and a patient seems to have progressive disease, yes, there are definitely patients with CLL whose fatigue is related to the CLL, but I’m a big believer that fatigue related to CLL should only be present in a patient who really has active signs of CLL.  So if someone is on watch and wait and their lymphocyte count is not changing and their lymph nodes are not enlarged, their fatigue is not going to be related to their CLL.

But if someone’s lymphocyte count’s climbing and their lymph nodes are growing then certainly their fatigue might in part be related to their CLL.

 

Andrew Schorr:

Okay.  This has been like being on a game show.  I keep throwing things at you.  I want to thank you for all your time.

Folks, we’re going to let Dr. Furman go, but we will be doing other Ask the Expert sessions and doing some live broadcasts in from ASH.  ASH, you alluded to, Dr. Furman, always has more coming out, more longer range studies, combination information.  So just to wrap up with, for those of us living with CLL, and, thank god, so many of us long term, me, 22 years, are you very hopeful that you have more options for us now no matter what our CLL situation is?

 

Dr. Furman:

I really do.  I think we have some amazing options now.  We have also the data that our current crop of novel agents really can be safe and effective long term, and that’s what I really think is so important to be cheerful about.

And in those patients who do progress we have a whole crop of other agents that will prove to be hopefully effective in those situations.  But I think it’s going to be the‑‑you know, the home run though is going to be the combination of BTK and Bcl‑2 inhibitor therapy or PI3 kinase and Bcl‑2 inhibitor therapy because in those situations I really do see patients getting very, very deep remissions that I hope will be extremely long lasting.

 

Andrew Schorr:

Think about it, folks.  I mean, I got FCR, a three‑drug combination, in 2000, 18 years ago, and it worked for a long time.  So the idea of combination therapy has worked well in cancer therapy hitting those cancer cells in multiple ways.  Dr. Furman, thank you so much for being with us today.

 

Dr. Furman:

My pleasure.

 

Andrew Schorr:

Okay.  From Weill Cornell.

And I just want to mention for our audience, remember we’ve got a lot coming up.  On Wednesday, November 28, we’re going to understand the ins and outs of watch and wait for those of you who are in that situation.  From the big ASH meeting in San Diego‑‑yay, I don’t have to get on a plane to go anywhere‑‑we’ll be also doing live broadcasting so be sure to be signed up for that.

And then on December 5th we’re going to talk about the financial issues because, as Dr. Furman talks about, combining these oral therapies, these are expensive, and so what support is there for you so you get the combination should you need it and it’s affordable.  So keep an eye on that.  Go to the Patient Empowerment Network’s website, powerfulpatients.org, and take a look at what we have on Patient Power as well.  Thank you so much, Dr. Furman.  Thanks to our audience and stay tuned for what comes out of the ASH meeting.  I’m Andrew Schorr.  Remember, knowledge can be the best medicine of all.

Please remember the opinions expressed on Patient Empowerment Network (PEN) 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.

Patient Cafe® CLL – October 2018

Dealing with a Mid-Life CLL Diagnosis

Patient Cafe® CLL – October 2018 from Patient Empowerment Network on Vimeo.

Four Chronic Lymphocytic Leukemia (CLL) patients got together to share their story and advice on dealing with a mid-life diagnosis, and how that can affect your personal and professional life.


Transcript:

Esther Schorr:
Hi there. Thank you for joining our Patient Cafe today sponsored by the Patient Empowerment Network. I’m Esther Schorr, and today I’m meeting virtually with a group of CLL patients, chronic lymphocytic leukemia, who are all facing this diagnosis during their middle years. So of course there’s no really good time to be diagnosed with something serious or diagnosed at all, and it’s never easy and it’s never welcome, but in our middle years the career ball, your personal life direction, the people that you indirect with, the relationships you have are already pretty well in progress and a diagnosis can feel as though personal and professional life kind of had a monkey wrench thrown into it and that your plans for life could be derailed.

Our guests today are going to share their stories and advice about how they’ve been able to deal with a midlife diagnosis. So just before we start I want you to know that this conversation is never, would not be a replacement for medical care, medical advice. Each patient’s situation is unique, so I really encourage you to consult your own doctor, your own medical team for the treatment that’s right for you.

So first of all I just wanted to tell you a little bit of where I fit into this conversation. My husband, Andrew, who you’re going to meet in a second, was diagnosed with CLL in his mid-forties, and at the time we had two small children.

Also, we were in the middle of growing a fledgling business that then became what we do now in educating patients. And we were devastated. It was scary. We didn’t know what the complications long term were, we even wanted to have a third child at the time, and certainly, like most people, we didn’t know anything about CLL. We didn’t know. And the word “leukemia” was very frightening. We were very lucky at the time. We had supportive family and friends, and we found great medical care through networking with other people on the internet, through online support groups, etc. And ultimately Andrew got through a clinical trial, went into it, went through the trial and had a long remission, and we’re very, very thankful for that.

As a care partner, I will tell you it’s taken years of ups and downs for me emotionally to come to terms with the fact that we can’t really live our life based on what‑ifs.

And we’ve gone on together with our friends, our family, and we just live our life. We now live in southern California near the beach with our dog, and we have three grown kids who are very supportive, and‑‑but we’ve learned a lot along the way. And so I’m hoping that this discussion will help those of you that may be in similar circumstance to kind of come to a place where you can move on with your life and feel empowered. Is that’s my story. I want to have each of our guests introduce themselves. So why don’t start. Jeff, Jeff Folloder, why don’t you start.

Jeff Folloder:
Hi. I’m Jeff Folloder from Katy, Texas, which is just outside of Houston. I am a CLL patient, and I am also a Patient Power advocate, champion, evangelist, pick one of the terms, whichever one you’re comfortable with. I was diagnosed at 46 years of age.

I absolutely, positively was not expecting to hear my doctor say something’s wrong and you need to go see a specialist. Walked into the specialist’s office, saw a bunch of old, sick people in there, said this isn’t me, and the next day I was told, yes, it is. So my diagnosis did absolutely come as something of a huge shock. It was like a sucker punch in the gut, and it took me a bit of time to figure out has comes next.

I was very fortunate to get connected with some folks here in Houston who got me enrolled in a clinical trial after two, two and a half years of watch and wait. I got six and a half years of rock solid remission out of my clinical trial. This past July I have recently relapsed, and I’m looking at it right now quite frankly as no big deal.

I’ll get treated when it’s time to get treated. In the meantime, I’m driving all over the country, I’m doing all kinds of things. I’m living life to the fullest, and it’s actually okay to take a nap.

Esther Schorr:
Thanks, Jeff, that’s perfect, and we’ll talk more about that journey for you in a minute.

Jeff Folloder:
Absolutely.

Esther Schorr:
Let’s try the other person, Andrew, and then we’ll hit Michelle and Jeff.

Andrew Schorr:
Esther, thank you for hosting this program. So you recall vividly I had a routine blood test at age 45, and the doctor initially said when he tested my blood, oh, you’re probably fine because I had been getting some nosebleeds, and then he called me, and he said you’re not fine. What is it? Leukemia. What is leukemia? I wasn’t even sure it was a cancer. And I also didn’t understand the difference between acute leukemia and chronic leukemia. And so what knowing I’d heard somewhat about acute leukemia then, Esther, you and I, remember, we walked in the park in a sunny spring afternoon near Seattle, and I thought I was dead. And I was saying at 45, we have two kids, hopefully you’ll be well provided for, and I had life insurance. Is that it?

Well, fortunately, it hasn’t worked out that way, and I got a long remission, pretty long, Jeff, 17 years, actually and then needed CLL treatment again many months ago, and that’s worked well. So just like what Jeff said, knocking it back, going on with my life. We had a third child, but when I was first diagnosed I thought it was over, but now looking back I know it was really just the beginning, but maybe seeing life a little differently but living.

Esther Schorr:
You thank you. Thank you for that, Andrew. Michelle, tell us a little bit about you.

Michele Nadeem-Baker:
Hi. I’m Michele Nadeem-Baker, and I’m a Patient Power advocate as well and a Patient Power patient reporter. And I have to say, as Jeff had mentioned, I was in shock, absolute shock, no awe, but in shock when I was told that I had CLL. My PCP like everyone else’s had said that my white blood counts were a bit off, told me to see a hematologist, and I was very naive not realizing hematologists generally went along with oncology.

Went to the local medical center when I lived in Miami and was not told I had CLL, and then I was called back in for when some other test results came in, the flow cytometry came in, which I now know but at the time had no clue what that meant, had no clue what the doctor was talking about. He didn’t even‑‑he said I had the C word. He didn’t even say cancer. And then he said CLL. I had to ask what that meant.

And that’s why I’ve been such an advocate for communicating better for patients because I was a bit dumbfounded as well as in shock. He had no information to give me, and I have since tried to learn a lot and become an advocate for other patients. Andrew is the first person I met with CLL. I reached right out to him, but it was very tough.

I had been married at that point for only two years to my now husband, and it was a real, real shock. My career went into a tumble, a turmoil, and it got put on hold for a while. So I was in watch and wait for about three years. In that time I moved back to Boston, so I could be seen at Dana‑Farber. And as both Jeff and Andrew said, life does go on. You just‑‑you have to get into kind of a new step and a new rhythm, but life does go on thankfully and thanks to all the research that’s been going on.

And I’m still on a clinical trial. Still in remission. Fingers crossed that will continue. And I’m happy to chat about anything that will help.

Esther Schorr:
Right. We’ll have a lot to talk about, I think. Thank you, Michelle. And the other Jeff, tell us a little bit about where you’re from and where you’re at now.

Jeff Brochstein:
Will do, Esther. Thanks again for having me. Really, my story follows much of the same path. Diagnosed at a fairly young age, 38 years old. I discovered a small lymph node in my neck while I was washing up one Sunday night back in late 2012 and got it checked out and couple months later high white blood cell count, and another high white blood cell count when I was tested again, and I was diagnosed. And really from there I just buried myself in just doing all the research and all the data gathering that I could.

Maybe about three, four months after diagnosis I discovered Patient Power. I found Andrew. I gradually started corresponding with him. From that point on, the next four and a half years I was in watch and wait until probably late 2016, early 2017. Reached out to Andrew again at that point. We had a conversation about FCR, which my doctors here in Atlanta had been talking to me about. Decided to go to MD Anderson after seeing some of the videos on Patient Power of Dr. Keating, Dr. Thompson. Went there to see actually Dr. Thompson who had mentioned ibrutinib and some of the other targeted therapies that had been just approved for frontline. And came back to Atlanta and my doctor and I kind of came to the conclusion that maybe starting with one of the targeted therapies was probably best me being unmutated.

And started ibrutinib March 2017 and lymph nodes went away after a week and kind of been in remission pretty much ever since and everything’s going well.

Esther Schorr:
Thank you, Jeff. And all of you, there are some recurrent themes here that we’ll talk about, but obviously this whole idea of coming into the middle of your life when a lot of things were already in play was something that you had to pretty quickly say, okay, what am I dealing with and then figure out how do you continue with what you were already doing and how does it fit in.

So I want to dig into that a little bit more, and I’d like to start with you, Michelle. And tell me if I’m wrong, but my understanding is that when you were first diagnosed you were really in a pretty high‑level executive position in PR and communications, and how did you cope with the diagnosis in the middle of a very busy professional life?

Michele Nadeem-Baker:
It was not easy, and that part still isn’t easy. I’ve been trying to still come to terms years later with that. I was at a height of my career in a dream job, and I knew that I could no longer stay in that job because it meant staying in Florida, and I needed to move back home where my family was and my husband was. We had a long‑distance marriage because of career. It made me realize what’s really important in life, and that’s to be with family, but I was able to then continue using parts of my career in other ways and to help, as Andrew did. You’re doing very similar things yet now you’re doing it to help patients, and that’s what I’ve been trying to do. You’re a great mentor, Andrew. And so it, yes, it was very difficult when it comes in terms of that and as well as income and being used to being a high income earner and then not having that.

Esther Schorr:
So can you share how you made that transition? It sounds like you moved closer to family.

Michele Nadeem-Baker:
I did.

Esther Schorr:
And career‑wise what helped you make that transition?

Michele Nadeem-Baker:
I had to give up my job and my career. And I was well known in Florida, and I moved back up to Boston. I needed to remake connections from when I lived and worked here. And I’ve been consulting ever since versus within a company and a full‑time job. So trying to use what I do best, just communicate and go and help others. And what’s been happening is I found that it’s been mostly in life sciences and related fields.

Esther Schorr:
Okay. Thank you. You know, you mentioned Andrew. Andrew, did you want to speak a little bit about that transition that you had to make because we were at the time sort of building‑‑well, sort of. We were building a business and a family at the same time.

Can you share a little bit about what it took for you to make the change that you did?

Andrew Schorr:
Sure. Well, I think‑‑we were fortunate. We were already working in health communications. Michelle has sort of made that transition, and Jeff too actually is spending a lot of time doing that. So you kind of‑‑for us, you know, Esther, you and I think accelerated in what we were doing. I think for Jeff and Michelle they’ve sort of joined in where you can leverage what you’re learning as a patient to help others, and that’s very satisfying. And fortunately now with the internet we can to some degree do it on our schedule.

So sometime we’re tired. Sometime we’re distracted‑‑not distracted, that’s not fair, but we have doctor visits. We have bone marrow biopsies. We have other things. I get IVIG, monthly infusions. So how do you juggle all that?

And I think we learned to do that. At least that’s what I’ve done, and I think it’s been satisfying that we can communicate with others, and it’s part of who we are. Never wanted the diagnosis of CLL, no, no, no, but if you have it how can you go forward and do that? And I know both Jeffs are involved in helping other patients as Michelle is too, so that’s part of it.

Esther Schorr:
Thank you. So, Jeffs, any additional comments or points you want to make about this?

Jeff Brochstein:
As someone who is probably I think out of everybody here who is maybe less in a patient advocacy role, I mean, I’ve done it a few times, I’m always open to who, you know, Andrew sends me in terms of young people who are diagnosed who want to speak to someone with whom they can share experiences with, you know. I’m an IT projects manager. It’s not necessarily boiler room type work but it’s still, it’s pretty fast paced.

It’s pretty intense at the times. One thing that I’ve really experienced in terms of just first firsthand trying to deal with having CLL and making all the appointments, the bone marrow biopsies, the routine blood work, you know, I tend to‑‑I don’t openly communicate my condition to everyone at work, but I’ve been lucky and I’ve been blessed to have pretty decent managers who I directly reported to ever since diagnosis, and they’ve been just very accommodating and understanding. And in some regard they have to be, but I’ve been lucky enough to find that in the workplace, and that’s been really, really great.

Esther Schorr:
Okay. And actually that’s a great segue because the next thing I was going to ask about was how each you have handled communication with family and friends about the diagnosis. That’s a very personal thing. There are some people who are way out there and, gee, we don’t know anybody like that, but it’s a really personal thing. So maybe Jeff, Jeff Folloder, how did you handle that initially, and has that changed over time?

Jeff Folloder:
Well, I never hid my cancer diagnosis from anyone. I believe in the very first Patient Power event that I did I talked about the mistake that I made with my cancer diagnosis. I told my family. I told my wife. I told my daughters. I told my friends. But I kind of sort of forgot to tell my daughters that my CLL wasn’t considered hereditary, and my daughters kind of sort of flipped out for a significant period of time until I learned, wow, I should probably let them know what exactly is going on so that they can stop worrying a little bit.

And I did. And so now I make sure that people understand what it is that I think they need to hear. I don’t tell everyone the gory details of my CLL experience. Some people I tell, yes, I’ve got cancer. I’m a survivor, or I’m in remission, or I’ve relapsed. And the people I care about, I make sure they understand what’s really going on and how it affects me.

And at this point some almost nine years after diagnosis, and I know this is going to sound very counterintuitive, cancer gave me an awful lot of opportunity. I would have not had the ability to pull the hand break up on my life and reprioritize everything without a cancer diagnosis. I was moving too fast. Concentrating on the wrong things. Spending my energy on the wrong things. Now I focus on the right things.

And as Andrew is fond of saying, I’ve learned how to live well, and that’s because I’ve learned from everyone involved with Patient Power.

Esther Schorr:
Wow. Well, thank you. Michelle, Jeff B, Andrew, other commentary about how you communicated or chose not to communicate?

Michele Nadeem-Baker:
I did the opposite. Because‑‑probably because my career included crisis communications I was afraid if once I let out the info it would be career suicide, which is a very sad thought when you think of society. But instead now I’m trying to change that, that thought has that’s out there, that you still can be viable when you have a cancer diagnosis, which everyone here is proof of. But I was very afraid of that, that that would ruin my career.

As a matter of fact, I did not come, you know, out until I started in the infusion room and reported for Patient Power from it each time.

I was in infusion with the FCR part of my trial. So it dawned on me that in the past I had worked with the American Cancer Society and convinced people to come out about their cancer and explain to other patients. And I felt somewhat like a hypocrite that I did not, and I realized it was time. It was really time to do that. And it wasn’t only about me. It was about others as well. And that really helped empower me a lot.

And also as Jeff has said and I was saying before, it really does help you prioritize what is right, the right things to be spending your time on because I was on the hamster wheel of career and never sleeping, and this forced me, I had to. And as you said, naps aren’t a bad thing. I had to learn that, too. So it does help in certain ways, although it’s not a great way to have to learn the lesson. It is what we have, so you have to make lemonade out of lemon s, and I think that’s what all of us here have been doing.

Esther Schorr:
Thank you. And Jeff B?

Jeff Brochstein:
When I was first diagnosed, there were a handful of people, friends and family, who I told. And I can honestly say and somewhat brutally say this, there were some people that swept it under the rug because it’s a chronic condition. I didn’t need treatment right away. Many of them didn’t understand that, it being cancer, because they’re used to acute cancers, tumor‑based cancers that you have to attack immediately.

You know, I had other people who kind of buried me already because I told them cancer, and they stopped reaching out to me. And even up until today I still get a rare text message from some of these folks asking me, not in these words, but they pretty much ask me if I’m still alive. And I’ve kind of put them out of my life.

And there were some who were understanding, who actually read up on the things that I had sent them about CLL and how it’s chronic and how there’s all these emerging therapies on it.

So really for about a couple years after that, to kind of going to what Michelle was saying I was kind of in the closet about it. And then when my lymph nodes in my neck became a little more apparent and I really couldn’t explain it away all that easy, I came out a little bit more about it. And, you know, like I said, there have been people who have been very understanding. There have been people who have told me, well, it’s chronic and you’re taking a pill for it now so it can’t be that bad. And there’s been other people who have been like, oh, my god, cancer, you’re still alive. And, you know.

Esther Schorr:
I’m going to go a little bit out on a limb, Jeff. If I understood correctly you were diagnosed‑‑weren’t you diagnosed when you were still dating your wife? Is that?

Jeff Brochstein:
Her and I had just gotten engaged. We got married last year. She’s actually expecting, by the way, late February.

Jeff Folloder:
Congratulations.

Esther Schorr:
Congratulations.

Jeff Brochstein:
We’re having a boy.

Esther Schorr:
Oh, that’s so exciting.

Jeff Brochstein:
Thank you.

Esther Schorr:
And I bring that up because the other question I kind of wanted to explore with all of you is how did your diagnosis, if you’re willing to share, impact your relationship with your significant other or your spouse, you know, the person that’s closest to you? Was that different than dealing with other people? Anybody want to…

Jeff Brochstein:
I can start that off. You guys met Olga at ASH last year. If anything it’s solidified us. She’s a fire brand about it. She’s my rock. I really couldn’t make it through this without her. She’s been vital in terms of just my survival and us just having a happy life together. And we’ve been challenged by a lot of things. This is probably one of the biggest challenges, and it’s just made us better. So even under those circumstances, so.

Andrew Schorr:
Esther, I think I should jump in.

Esther Schorr:
Go ahead.

Andrew Schorr:
And you can tell us. So, you know, I was sort of more clinical. What do I have? What do we do, etc.? And as I said earlier, I thought my life was over, was relieved to find out it wasn’t. But all this was coming down on you too, and I don’t know to what extent you really shared how you were feeling because it definitely affects. We were‑‑you were a young woman. Esther’s seven years younger than I am, so you were younger. We had the idea‑‑we had two little kids, and we had the dream of having a third, so you might share what you were thinking.

Esther Schorr:
Sure. There was never‑‑I think the hardest person to share your diagnosis with was you, and my feelings about your diagnosis, the hardest one was to share that with you. And what was most helpful to me because I had loads of fears was to share it with other people who loved you as much, loved you in their own way as much as I loved you as my spouse.

So, you know, I think if anything it just solidified my dedication to our relationship and to figuring out the best way to support you emotionally and physically and professionally. So, yeah, you know, all of you have been talking about sort of there’s this weird silver lining of having a diagnosis of something. The silver lining is you look at what you’re really grateful for. And that’s really what it did for me as a care partner to you, Andrew. To say, okay, this ain’t good, but what’s the good stuff that we can do if we work together, and that’s really what’s happened.

Andrew Schorr:
We should mention that we began couples therapy.

Esther Schorr:
That’s right. We did, and that was very, very helpful so that I was able to communicate with you openly and you weren’t afraid to tell me when you had feelings, whether they were of fear or trepidation or not knowing how I was going to react. It took a long time for us to figure that out. I think we have.

Jeff Folloder:
One of the interesting things that happened in my particular journey, I got the diagnosis and of course everyone’s freaking out in the house. My wife is freaking out in the house, and she was being somewhat stoic about it and really didn’t know quite how to deal with things.

When the first doctor that I had seen that had given me the diagnosis described the treatment plan he wanted to do, I did a typical type A personality thing and said stop, went and talked with Dr. Google for an awful long time and decided that I needed a second opinion right then and there. And one of the watershed moments of my treatment journey was when we were sitting in that clinic room at MD Anderson when my doctor, not me, but to my wife walked over, picked her up out of the chair and gave her a bear hug to let her know that she’s a part of this process as well. It’s not just about me. And that was sort of a little bit of a release from the pressure valve because this is very much a team journey. I can’t even begin to imagine someone with CLL going through it by themselves, so I am extremely grateful to my beautiful bride of 31 years, and I could not have gotten to this day without her, period.

Esther Schorr:
Thank you. Michelle, did you have something you wanted to add on this?

Michele Nadeem-Baker:
Yes. A few things in that we waited until recently for couples therapy. I would suggest that it be started sooner, as you and Andrew did, because it would have been very, very helpful.

In the beginning I tried to protect my husband from things, and as I was living in Florida and he was in Massachusetts I considered not even telling him. In the first 24 hours, you know, your mind does crazy things. He was not with me because I didn’t even know there was anything wrong with me when I was told, and I even considered for him ending the marriage because it wasn’t fair to him. This all went through‑‑crazy things go through your mind. So I didn’t think it was fair to him, and his first wife had cancer. So the mind goes to crazy places.

Thankfully I did not. I shared, and he has been‑‑he has been by my side every step of the way probably much to his own physical health detriment, which is on track now. But he sacrificed a lot. He has been with me for every appointment. Every treatment he was by my side, every bone marrow biopsy. And thanks to him they redid some of mi tests which showed my genetic markers which they were not aware of as to how serious my CLL was.

He had read about that things could mutate or that tests only test a certain percentage of your blood and that perhaps it was different, and my symptoms were becoming more apparent that I was getting closer to treatment even though other things, other numbers did not show that through my FISH tests, my flow cytometry test. So he pushed them to redo the tests, and lo and behold, I was 11q, and they didn’t realize that. And IGHV they had known unmutated, but they didn’t realize the 11q. So I do suggest that people if they start seeing certain symptoms they do push for certain things, but my husband did that. I didn’t. I would not have pushed for that myself, so thank goodness I had a partner along the way, and I don’t think I could have done everything I did to be here today.

Esther Schorr:
If I’m reading all of you correctly, the relationship with someone else, a care partner, a caregiver, was additive for you.

Jeff Folloder:
Absolutely.

Jeff Brochstein:
Absolutely.

Esther Schorr:
And open communication.

Michele Nadeem-Baker:
Absolutely.

Esther Schorr:
Yeah. Because I know that we, Andrew and I, have spoken with patients where they really were reticent to share with the people closest to them for fear of scaring them, scaring them away, not knowing how they were going to react, so that’s a really important point.

The other thing I wanted to ask you all about was a few of you referenced having a wonderful medical team and finding a specialist and educating yourself. So finding the right doctor, educating yourself about the disease, what did that do for you? I mean, did it help you with just the emotional part of it? Did it help you feel more in control? Why was that a good thing?

Andrew Schorr:
Could I start, Esther?

Esther Schorr:
Yes.

Andrew Schorr:
So, first of all, Jeff Folloder mentioned about the doctor giving a hug and maybe it was probably Dr. Keating, but other doctors, Dr. Kipps down in San Diego gives hugs too.

I was‑‑put my hand out, and he said, no, I want to give you a hug, and he’s done that with you too, as Dr. Keating has. What it did by getting the right doctor is I think gave me, and I think you too, confidence. And this ties in to Jeff Brochstein as well. Confidence to go on with your life and at that age, earlier age, said go ahead and father a child, which is a big deal, right? That’s not just a short‑term thing. And I’d be interested in what Jeff Brochstein says, but I know you and I, Dr. Keating gave a hug and said, go have your baby, which here we were in a major cancer center. Go have your baby.

Esther Schorr:
And he’s 21 now.

Andrew Schorr:
Yeah, he’s 21 and he drives us crazy and we love him, but he’s our thirties, he’s our miracle baby. And, Jeff, you and Olga having the confidence to do that.

Jeff Brochstein:
Well, Andrew, a couple, I mean, we’d been trying for a while, and a couple of years ago a doctor told Olga and I that we had a better, almost a better shot of hitting the Powerball than we did of conceiving, and it kind of happened on its own a few months ago.

Esther Schorr:
That’s great.

Jeff Brochstein:
So it’s really a miracle. You know, I think what really found a comfortable place for me is I found a community oncologist who did have a specialty in hematology though he wasn’t a research specialist who has a great bedside manner, and he was also very cool with me going to MD Anderson and talking to Dr. Thompson and talking to a research specialist, and that gave me a good counterbalance. That gave me that second opinion. I could weigh that with what Dr. Stephen Szabo here at Emory was recommending, and I came up with what was best for me.

And Olga‑‑and us getting pregnant was just all the more of a present on top of that, so life is good in that regard.

Esther Schorr:
Any other comments on that? Jeff?

Jeff Folloder:
I’d like to chime in just a little bit. Andrew had mentioned Dr. Keating and his bear hugs and all that wonderful you stuff. One of our very first appointments with Dr. Keating, I felt the need, as many new patients do, to sort of like unload the guilt, all the things that I was doing that may or may not be exactly healthy, so it was sort of like a confessional.

And I can remember telling Dr. Keating, okay, you need to know that I smoke an occasional cigar, maybe an occasional briar pipe. And he asked me, well, how often do you smoke, and I said, ah, three or four times a month. And he said, okay. And I didn’t quite understand what okay meant. And then I kind of confessed, okay, you need to understand that most evenings I have a whiskey or two.

And he asked me what type of whiskey I drank, and he complimented me on my taste. And he actually stopped me and said, I am here to help you live a good life, not make you miserable. That’s where we were focused on. My first doctor just wanted to start treatment. Dr. Keating wanted me to live well, so instead of just getting a, quote/unquote, gold standard of treatment, Dr. Keating was focused on getting me the best treatment. So that was sort of my start to living well.

Esther Schorr:
Yeah. That’s how we felt about finding the right team for you, Andrew, was that. It’s what’s the quality of life and what are your priorities in your life and will your medical team‑‑is that what they’re focused on.

Andrew Schorr:
Right. You know, I make one comment about that, Esther, and I want to hear what Michelle says too.

So we’re blessed now with a range of‑‑a whole array of treatments, Jeff, you recently, Jeff Folloder led a town meeting in Jeff Brochstein’s home town recently where you spoke about that, that there are more treatments either approved or in research than ever before. So part of it is what’s your situation, and Michelle talked about unmutated and 11q, what treatment lines up with that clinically, but also what are your goals? Somebody who has FCR might be able to stop treatment after six months if it’s right for them and if it works for them. Some people may‑‑there’s some idea with Venclexta combined with Gazyva, maybe you’ll be able to stop after two years. With ibrutinib you’re taking it long term.

So what’s right for you? And I think all of us need to take a look at our lives, have a conversation with a knowledgeable doctor and state our goals. What are our personal goals for what works for us. Michelle, I mean, you may have things you want to add too.

Michele Nadeem-Baker:
Certainly. So when I went on the clinical trial I’m on, which some people know as IFCR, ibrutinib and FCR, I did not know at the time nor do I think they knew long‑term what would happen, but here it is. I can’t believe it. It’s three years this month I’ve been on it. I’ve been on ibrutinib for three years now, and I will be indefinitely until either it stops working or something better comes along, and I am able to live life. I am looking of course, as we all are, for a cure someday, and I’m still not MRD negative. That would be wonderful. That would be great. But right now I’m holding steady, and that’s a good thing. So my goal is to be able to live life as healthy as I can, and that’s what this is doing right now.

Esther Schorr:
Great. Well, so, I’m going to switch gears a little bit, and I want to ask you all a question. Have any of you dealt with a situation where you tell somebody what’s going on for you and they say, well, you don’t look sick. What do you say? What do you do when somebody says that to you?

Jeff Folloder:
A lot of smiling and nodding. It is a very common response. I think the two most common responses that we as CLL patients hear is, one, you don’t look sick, or two, oh, you’ve got the good cancer. Neither of these are acceptable. Yeah, I look good because I work at it. The whole concept of you don’t look sick, well, there’s a difference between looking sick and feeling sick, and as a CLL patient I take as much charge of my physical well‑being as possible. Before I was diagnosed with cancer I was a couch potato. I never exercised.

I didn’t need to. I was pretty lethargic and sedentary. Now I’m an avid power walker knocking out between 30 and 35 miles every week. I do it pretty fast, too. I’m trying to maintain my weight, and I’m trying to maintain my energy level. So, no, I don’t look sick. Sometimes I feel sick. I just did a week and a half on the road. I missed a bunch of naps. I’m a little tired. Actually, I’m a lot tired, and I’m looking forward to a nap this afternoon. And I’m going to take one, and it’s okay.

But this is part of my new normal. My new normal is the way I feel doesn’t necessarily show. And my wife understands that. My family understands that. The people close to me understand that. My doctors understand that. So if people don’t get it, that’s their problem, not mine.

Esther Schorr:
Any other commentary on that? I think that’s a great, very positive way of looking at it.

Michele Nadeem-Baker:
I have to say that I’m trying to look at the positives about people saying you don’t look like you have cancer. In other words, I feel like they’re trying to convince me I don’t have it because I don’t look it, but I guess I’d rather not look it than look it. That’s what I keep trying to tell myself. And as Jeff just said, I do smile a lot, it’s like, oh, yeah, you really don’t know what you’re talking about, but thank you. I know you mean it to be good and be nice. I also know people don’t know what to say. So I try to put the little sarcastic bubble aside and just try to think of that.

But as Jeff said you do have to‑‑you have to take charge. And I continue to, as Jeff was saying, I continue to work out in the way I do throughout even infusion. Continue to go to the gym and use weights and do cardio. And when the weather’s good enough up here, which it’s now turning to not be, do whatever I can outside as well as in the gym because you feel better.

And that is one way I felt I could take control when everything else was out of control health‑wise. So it also helped me in that way, in that respect as well as to be healthier physically. So it’s very important, I’d say.

Esther Schorr:
And really what you guys are all talking about is how do you stay empowered and positive. And for you, Jeff, it’s everything from power walking to taking naps, and for you, Michelle, it’s going to the gym and being an advocate. And Jeff, Jeff other Jeff, you’ve talked about some of the things that you do. And you’re going to be a lot busier with a baby in the house.

Jeff Brochstein:
That’s right.

Esther Schorr:
Anything else that helps you to stay positive in all of this?

Jeff Brochstein:
You know, I was always active for I don’t know 20 years before I was diagnosed. I’ve always lifted weights, done Cross Fit in recent years. So I spoke about this earlier, and this really kind of repeats some of the stuff that Michelle and Jeff were saying.

I’ve never appeared sick. I’ve always been physically fit. There was a time for about two years since I was diagnosed that I had some lymph nodes that went away once I started the ibrutinib. People never associated me with some sort of chronic or acute illness. And when I’ve told them what I have and I’ve told them about the condition, you know, I’ve also followed up with just trying to create awareness around this, send them some links, sending them some videos. Maybe sending them the original video I did at ASH last year, just to really create awareness around it. And it’s really up to them if they want to absorb it, on Jeff’s point.

Esther Schorr:
So, you know, I think to kind of wrap up all the things we’ve talked about, what advice do each of you have that might help someone who is facing a diagnosis of CLL in midlife? What lessons have you learned along the way that helped you face it?

You know, just kind of giving somebody advice, what would that advice be? And maybe, Andrew, do you want to start?

Andrew Schorr:
Yeah. I will say first given what we know about CLL and the range of things going on how, your life is not over. I thought my life was over. Here we are. I was diagnosed in 1996, or 22 years. I mean, I had no idea that I’d make it 22 months, right? And if you read some of the old articles and stuff you’d say, oh, life expectancy is not very long. So first of all, you’re going to live a long life and thank god for the medical research and the array of things that are available.

And I think Michelle said it too, right now, she’s been in a trial, she continues to take the ibrutinib, maybe there’ll be something else that she’ll need at some time and we’re confident that there will be. So, Esther, you remember that there was a guiding light, a patient advocate in CLL years ago when I was diagnosed, and she gave us two words as advice.

Chill out. And so that’s what I’d say. I’d say chill out. I don’t mean to be harsh. There’s a lot of grieving that goes with a diagnosis. I’ve probably said it to my friend Jeff Brochstein when we met in Atlanta last year, to you and Olga, but I would say that, and that’s based on evidence. That I’m living longer and people living a long time. And we get an eye into the research going on, and there’s a lot. So I think‑‑it’s not perfect. There are side effects, there are expenses, and there are course corrections in your head as well as in your life, but you’re going to live a long time. Believe me.

Esther Schorr:
Nice. Jeff B, any advice you would give to someone?

Jeff Brochstein:
Really along the same lines that Andrew just spoke and what Jeff had mentioned when he gave his intro. When you get CLL, when you get a diagnosis of this kind, god forbid, but when it happens during these years just take the what‑ifs out of your life. Take the projection out of your life because that will just make you grow worrisome and grow older and grow grayer. You really have to‑‑just to take things by the day. Just do your best early on to do as much research as you can about it. Try to see a specialist early on. I think that would helped me out my first couple of years if I would have gone to see a specialist as well as have somebody local and community‑based where I lived.

Reach out to people like Andrew, to groups like Patient Power. It’s a different world now than it was 10 years ago in terms of technology and information that’s out there. And I think most of all just keep tabs on the treatment landscape that’s changing every month it seems like or every six months something is approved, something new, something better, something not chemo related. Really, just pay attention to those things and you’ll be okay.

Esther Schorr:
Thank you. Jeff?

Jeff Folloder:
I would tell everyone that is recently diagnosed with CLL to do a couple of things. First, take a deep breath. I guess during pregnancy they would call that the cleansing breath, but you’re going to need to do a couple of them. So remember, that, Jeff, cleansing breaths.

Second, everyone has said it again and again and again. See a CLL specialist. You don’t have to see the specialist regularly, but you need to get a CLL specialist as part of your team. The landscape of medicine is changing not just monthly. It’s changing weekly, daily and hourly. One of the things my doctors keep on telling me the longer we wait the more likely we come up with something even better to treat you with. When I was first diagnosed we never heard the word “cure.” Now we’re hearing the word “cure” for some forms of CLL, and it’s getting better for lots of people very, very fast.

Make a few goals. I want to do this. I want to do that. Esther, you guys just saw Bruno Mars. Well, you saw him in a coffee shop. I’m going to go see him in concert this weekend. Why not? This is not a death sentence. This is just a part of my life. So I’m going to go do the things that I want to do, and that’s what I tell every single patient. At several of our town meetings I have made the point to remind people that statistics only look backwards. When you start looking at Dr. Google you’re going to see that the average life expectancy of a CLL patient is about six years. Well, that’s only looking backwards. I’m now nine years into it, so some people would say that I’m past my expiration date. I don’t look at that way. I’m living a great life. Every minute that I’m kicking, I’m kicking it for real.

Esther Schorr:
Thank you, Jeff. And, Michelle, any parting advice in this discussion?

Michele Nadeem-Baker:
That’s a tough act to follow.

Michele Nadeem-Baker:
So I would say the number one thing is to educate yourself and not just with as Jeff calls it, Dr. Google. Because if so you will get frightened by what it says because it does look backwards. But I would say to educate yourself as much as you can through credible sources, through current information versus past. Otherwise, you’ll get really frightened.

And the other thing is for those of you watching this, Patient Power generally has the leading doctors around the world for CLL on it. If you can get to one of those doctors that you see or one of the institutes, then that is a great source to go to to find out what is best for you to match you up.

If you do need treatment yet or not, projected time to treatment. And then if you can either go to whichever doctor that is, or in conjunction to what Jeff of Atlanta as opposed to Jeff of Texas is doing, pair that with your community doctor if at all possible so that you don’t have to travel. But that way you can be confident that you’re getting either in a clinical trial tomorrow’s treatment today or the best in treatment there is today. And there are so many out there.

The other advice I’d give, and someone gave this to me in my first week of diagnosis. Stay as healthy as you can today because there will be something to treat you tomorrow. And we’re all proof of that, all of us here right now.

Jeff Folloder:
Excellent advice.

Esther Schorr:
Yeah. Those are all such great advice, and you all are a delight and an inspiration to talk to. I feel very honored to be sort of in the middle of this circle of empowerment.

I want to thank all of you, Michelle, the two Jeffs and Andrew, for sharing your personal experiences as positive and very empowered CLL patients. It’s always inspiring to talk with each of you, and you provided some great perspectives and suggestions. And I want to thank our CLL community for joining us today and I hope that this conversation has been helpful to you. I’m Esther Schorr. Thanks again.

Ask the CLL Expert – Dr. Jeff Sharman

Ask the CLL Expert – Dr. Sharman

 

“Ask the Expert” session with CLL specialist Dr. Jeff Sharman from Willamette Valley Cancer Institute and Research Center.


Transcript:

Recorded on: September 27, 2018

Andrew Schorr:
Greetings to this live Ask the Expert program for those of us dealing with CLL. I’m Andrew Schorr from Patient Power. Welcome to this Patient Empowerment Network program with financial support from AbbVie and Pharmacyclics. Thank you so much for being with us.

We have a wonderful expert with us today who is so knowledgeable about this, and that is Dr. Jeff Sharman. Dr. Sharman is the medical oncologist, of course, one of them at the Willamette Valley Cancer Institute and Research Center in Oregon. He’s also the medical director for hematology research at the US Oncology Network with oncologists all across the country. Jeff, welcome back to our program.

Dr. Sharman:
Thank you so much. It’s nice to be here today.

Andrew Schorr:
Okay. Let’s get started. We have a lot of questions coming in, and if you, our viewer, have an additional question send it to cll@patientpower.info and we’ll cover as much as we can in the next half hour.

Here’s a question that came in based on news events that people follow related to CLL, and this is from William. He says, I heard there’s a new drug approved for CLL, duvelisib. Can you tell more about this? Where does it fit in in the CLL landscape?

Dr. Sharman:
Absolutely. Duvelisib is another PI3 inhibitor. It has considerable molecular similarity to idelalisib, which was the first in class medication approved amongst the PI3 inhibitors a few years ago. This molecule has considerable both biochemical similarity, structural similarity but also quite a bit of clinical similarity. So when you look at the patient population in which it’s approved, similar clinical trial designs led to approval, and so as a result it’s sort of in the third‑line setting that you could use it.

It is a‑‑the drug class is a sort of the whole PI3 family of which there’s a growing number. There’s idelalisib, umbralisib is in late‑stage clinical trials. Copanlisib is approved in follicular lymphoma but not CLL. And as a family they tend to be utilized less frequently than the BTK inhibitors such as ibrutinib and to some degree less frequently than venetoclax, as well, the Bcl‑2 family, and that has to do with some of the side effects, that there is, a frequency of diarrhea, LFT abnormalities and so forth. So it follows on the heels of idelalisib, and I would say has more similarities than differences.

Andrew Schorr:
Okay. Let’s go on. You mention about side effects. People ask about that all the time, so here’s a question from Judy. She says, I’m not able to get an answer from my husband’s oncologist regarding ibrutinib and severe body cramping. Have there been any reports showing this is a possible side effect from ibrutinib?

Dr. Sharman:
Absolutely, it is. It is‑‑well, absolutely possible, let’s say that. It actually is what I would say one of the most common side effects that I encounter as a limitation for ibrutinib. The medical term for it is arthralgias, which is sort of translates into joint pains. Sometimes you’ll also see actual cramps or spasms. I’ve had patients’ hands lock up when they’re driving sometimes, which can be a little bit concerning.

There is I think considerable question in the field. There are differences amongst thought leaders on this as to whether‑‑how to best manage it.

There’s some studies that suggest that lower dosages may‑‑after a patient has been on ibrutinib for a length of time you may be able to get away with lower dosages. Those pieces of clinical trial data are not as large and not as well validated, so I think it’s still in the hypothesis‑generating mode, but there’s some data that suggest you could do it. And if the choice was lower dose of ibrutinib or no dose of ibrutinib, I would probably go with a lower dose.

The other potential solution now is acalabrutinib, which is a second BTK inhibitor approved. It is approved by the FDA for mantle cell lymphoma. However, a lot of the clinical trials are in chronic lymphocytic leukemia, and there have been studies that looked at patients who have limited tolerance of ibrutinib, and in many cases they were able to go on acalabrutinib without a recurrence of the same side effects.

So that’s another possibility. It is in the NCCN guidelines that for those patients who have intolerance of ibrutinib consider acalabrutinib. So whether it’s dose reduction or drug substitution, those are sometimes two ways that I use to get around that scenario.

Andrew Schorr:
Okay. Now, we should be clear that acalabrutinib is not yet approved for CLL. Does it seem like that’s forthcoming? I mean, nobody can guess the FDA, but.

Dr. Sharman:
Yeah. So the clinical trial that will lead to approval, presumptive approval, was a head‑to‑head comparison against investigators’ choice of bendamustine rituximab or idelalisib rituximab, and that study is fully accrued and waiting for end points.

And I think that the feeling would be that should be a positive test and that it would eventually get CLL approval. Most of the studies have been done in CLL. It’s just the mantle cell indication came along more quickly.

Andrew Schorr:
Okay. All right. A lot of people worry about other side effects like fatigue, of course, in CLL. So here’s a question from Patty. She says, I’ve been taking 60 milligrams of Vyvanse, which is often used for ADHD, for extreme fatigue that she struggles with. And she says her blood pressure is elevated, and she’s read that that can be a side effect of Vyvanse. Are there any new or additional medications that can be used to treat fatigue without the worry of high blood pressure?

Dr. Sharman:
The way I would approach that situation, fatigue‑‑what I don’t know about this particular patient, is this fatigue that is attributable to the CLL or fatigue that’s attributable to medications?

CLL fatigue is probably one of the most bothersome sort of clinical realities, and for some patients even though they may not meet other treatment criteria such as rapid rise in white blood cell counts, systematic (?) inaudible adenopathy, marrow dysfunction. Sometimes fatigue is so debilitating that you need to do treatment for it. In the 2008 guidelines, fatigue was one of the‑‑it was like the sixth indication for when you treat CLL.

And I’ve seen some patients, you know, one immediately jumps to my mind. He’s clinician himself, very busy individual, likes to surf and so on and so forth, but his CLL left him so fatigued that he had to cut back on clinical work and so forth. And getting his CLL under control really made a huge difference for him. So in the setting of CLL I think that you may wish to consider talking to your doctor about going ahead and treating.

I find those are difficult, difficult discussions because if you don’t have the more classic indications for therapy it’s hard to know. Because fatigue can be a number of things. It can be thyroid dysfunction. It can be hormone imbalance with other hormones. It can be nutrient deficiencies and so forth.

Andrew Schorr:
It could be having three kids.

Dr. Sharman:
Absolutely.

Andrew Schorr:
Yeah, I know. Lots of things.

Here’s another question from Bob. Bob wants to know, will approaches likely change for first‑line treatment, for instance venetoclax, or Venclexta, within the next two years? You have ibrutinib first line.

Dr. Sharman:
Yeah.

Andrew Schorr:
You have FCR that’s been around. You have idelalisib I think could be used first line.

Dr. Sharman:
Actually, idelalisib is specifically contraindicated for first‑line therapy because of side effects.

Andrew Schorr:
Okay. So what about first‑line therapies, Jeff? Where are we there and what’s coming?

Dr. Sharman:
Yeah, so you’re kind of in this bind currently where your choices are chemoimmunotherapy or targeted therapy, and both of them have strengths and weaknesses. The strength of chemoimmun0therapy is that you give treatment for a fixed duration of time, and then you get treatment‑free interval that in properly selected patients should be measured in multiple years.

Andrew Schorr:
I went 17 years.

Dr. Sharman:
Yeah, absolutely. So effective therapy in appropriately selected patients. Now, when I say appropriately selected patients, that does get into some of the nuance about FISH changes and IGHV mutation, and I will tell you even amongst thought leaders in the field there’s some debate as to where you draw the line. Some patients are more suitable for ibrutinib either because of co‑morbidities or wish to avoid chemotherapy, but at least as of today ibrutinib is something you start and then stay on indefinitely.

And per the prior question, some patients have difficulties with that, whether it’s arthralgias or bruising bleeding and so forth. The medication you made mention of I think is the frontline therapy that may have the most profound impact on treatment selection in the next two years.

Andrew Schorr:
Venetoclax.

Dr. Sharman:
So the German Research Group, which is really just absolutely one of the best out there, have fully enrolled a clinical trial of obinutuzumab venetoclax versus chlorambucil and obinutuzumab, and I have to believe that that is going to result in a superior outcome for the venetoclax arm and that we will have the combination of obinutuzumab venetoclax for front‑line setting.

And what’s really appealing about that is that is one year of treatment and then treatment is suspended and stopped. And though we haven’t compared that to more traditional BR or FCR, I think it would be a highly effective regimen. We are currently conducting a study in the United States in our research network looking at the combination of obinutuzumab and venetoclax, and what I like about our study is we give‑‑for the listeners who might not be familiar with venetoclax, starting venetoclax is a little bit clunky because it works so quickly we have to be careful about a condition called tumor lysis syndrome, which is if you kill too much cancer cells too quickly that can cause some dangerous conditions, and venetoclax does do that.

And so what we’re doing is we’re giving two months of obinutuzumab and sort of getting rid of the bulk of the CLL and then starting the venetoclax hopefully under much safer conditions because, you know, in the Pacific Northwest we would say you can’t have forest fires if you don’t have any trees. So if we get rid of all the CLL or a substantial fraction of it somebody is less likely to have tumor lysis. So I think that’s the approach that is probably the next up in frontline.

The one other thing that could potentially change is acalabrutinib has conducted a three‑arm study‑‑excuse me, Acerta with acalabrutinib, where they give‑‑it’s a three‑arm study with either chlorambucil Gazyva, acalabrutinib or acalabrutinib with Gazyva. And so does the addition of a C‑20 antibody make BTK work better, remains the question outstanding.

Andrew Schorr:
All right. Let me just explain things to people. I’ve been around this for a long time and Jeff deals with these acronyms all the time. So, first of all, Gazyva is the same as obinutuzumab.

Dr. Sharman:
Thank you, yes.

Andrew Schorr:
It’s an infused CD20 that’s targeting the CD protein on the B‑cell, the bad guy, and it is sort of I don’t know if you’d describe it as a more powerful version but it followed from Rituxan or rituximab that many of us had. So the idea is you have an infused therapy for some length of time, and then you may have an acalabrutinib with it or you may have a venetoclax or Venclexta with it. Get I get it right, Jeff?

Dr. Sharman:
Yes. And if I just had one other comment. I think there are a lost questions and certainly some very compelling data about the combination of a BTK inhibitor such as ibrutinib with a Bcl‑2 inhibitor such as venetoclax.

Andrew Schorr:
Two pills.

Dr. Sharman:
Two pills, yes. And I think the preliminary data really looks extremely encouraging.

The challenge with that approach is it’s not approved in that combination and probably not going to be approved in the next two years unless the FDA does something that maybe I’m not anticipating at this point. That clinical trial that compares that to an existing standard is really only just getting off the ground now.

Andrew Schorr:
Okay. All right. Let’s buzz through some others. So John writes in, please compare purpose and benefit differences for FISH testing versus next generation sequencing. So maybe you could explain them too.

Dr. Sharman:
Absolutely. Thank you for the question. It’s one that I think is often very difficult to comprehend.

So a little bit of history here is that we’ve known for a long time with that patients with chronic lymphocytic leukemia have a pattern of common chromosome gains or losses, and we generally pay attention mostly to five separate categories.

There are some others that people sometimes look at, but ranging from sort of worst to best, worst is having a loss of chromosome 17p and P stands for petite arm, so part of the short arm of chromosome 17 is lost. 11q, Q stands for the long arm of chromosome 11. And then you have normal chromosomes or the addition of an extra chromosome 12 or the loss of a portion of chromosome 13 that kind of goes from worst to best. And that is very different than actual mutations in genes. So these are wholesale losses of large clunks of chromosomes.

And if you look at 17p the reason that 17p is bad is because there’s a particular gene there that’s very important called TP53, and you can actually have a mutation in TP53 without the presence of a chromosome loss. And so next generation sequencing looks at a host of additional genes that really until the last three to four years we didn’t know have the significance that they have. So TP53 is probably the most important, but you’re also seeing things such as SF3B1, NOTCH1, FA1. There are a variety of them that are out there. Some are better understood than others, and I think to some degree we’re still as a field even trying to figure out how best to integrate these into our clinical practice.

Andrew Schorr:
Okay. So would you recommend for the typical CLL patient that they have FISH testing, which tells you about the chromosomes, right?

Dr. Sharman:
Yeah.

Andrew Schorr:
And when do we need to do genomic testing to see with whether if any of those genes you just rattled off?

Dr. Sharman:
Yeah. So I can tell you about my own personal practice on that. I do think that the field, as I indicated before, is still trying to digest this, and a number of those specific mutations there isn’t necessarily super robust consensus as to when is the best time to draw those. So I’ll explain how I’ve thought through it, and if that resonates with you.

So my question in the previously untreated patient is whether or not this patient is suitable for chemoimmunotherapy. Previously I said appropriately selected patients get very long duration responses. I don’t want to give chemoimmunotherapy to a patient who is not going to get a sustained benefit.

If I anticipate that I’m only going to get 18 months benefit or two years of benefit, it is not worthwhile in my mind going through the chemotherapy to get that. I would rather put those patients on a tyrosine kinase inhibitor.

So my first stratification is the IGHV mutation status, and I would say in general if somebody’s mutated, which is the more favorable form, I would tend to err more on the side of chemoimmunotherapy for those patients. For those who are unmutated, which is the bad one, I would tend more towards targeted therapy. These aren’t totally black and white.

But my next level of stratification is FISH. So if you’ve got a bad FISH finding even if you’re in that favorable category I strip you out from the chemotherapy group.

Andrew Schorr:
So like if you had a 17p deletion, those chromosome deletions?

Dr. Sharman:
Yes. So if you’re mutated, which you think is good, but you also have a 17p, then I wouldn’t give that individual chemoimmunotherapy.

So if you have good IGHV, good FISH, good functional status and I’m thinking about give you FCR, that’s my final check is let’s make sure there’s not something lingering underneath the surface here that I don’t know about. So that’s where I check it.

Now, in the relapsed/refractory setting it is more the norm that those patients are almost all going on novel agents where those mutations are sort of a little bit less salient, so I don’t necessarily check that. However, I do recheck FISH with successive lines of therapy because that certainly can evolve. And to make things even a little bit worse now for somebody who has been on BTK, we need to think about BTK mutations and whether or not that patient might be suitable for a second‑ or third‑generation BTK inhibitor that can get around that.

Andrew Schorr:
Okay. And the genomic testing, when do you do that?

Dr. Sharman:
Well, so genomic testing is looking for those smaller mutations that don’t show up on FISH.

Andrew Schorr:
Okay.

Dr. Sharman:
So that’s my final break point before I would give somebody chemoimmunotherapy. But I will tell you, there are opinion leaders out there who will argue that chemoimmunotherapy is dead and shouldn’t do it.

Andrew Schorr:
Right. There are.

Dr. Sharman:
I’m in the camp that thinks there’s still purpose and value in doing that in appropriately selected patients.

Andrew Schorr:
Okay. Let’s get to some others. So Grant said he was diagnosed with a double diagnosis of diabetes and then, as he had additional testing, voila, he also had CLL. So he’s currently able to control his diabetes, and he’s in watch and wait for CLL. Is there any advice for me going forward with these two conditions? Diabetes and CLL.

Dr. Sharman:
It‑‑so I guess my question in such a circumstance is how is that CLL behaving. If he has a molecularly favorable CLL and he’s on watch and wait and things are simmering along, it may very well be that his diabetes poses a greater threat to his overall health than the CLL.

In contrast, somebody with an unmutated 17p deleted CLL, it’s the CLL that’s going to be more dangerous. Fortunately, the treatment interactions don’t overlap all that much. Sometimes with chemoimmunotherapy we give steroids, and that can be problematic for patients with diabetes, but I would manage them by and large independently.

Andrew Schorr:
Okay. We’ve gotten several other questions. Sharon, we got yours and Jason. They were asking about first line with ibrutinib, and I think we spoke about that and other choices that may have a different side effect profile if ibrutinib has a problem. And also Sharon had written in about she’s in this watch and wait and she wonders about FCR, and I think we can hear from you that FCR and maybe BR in some cases, which is this chemoimmunotherapy approach, still has a place in your mind. So, Sharon, stay tuned.

Lucy wrote in. She says, given the 17 (?) (p53) deletion what role does that play in determining the beginning of treatment for the CLL naive patient, and you were just saying probably not FCR or BR.

Dr. Sharman:
Yeah. Boy if somebody had a 17p deletion I would strongly advise against traditional chemoimmunotherapy. I think it can actually be more harm than good in some cases.

There is a more subtle point though that I would jump onto, which is what factor does it play in first‑line therapy. It’s not so much the agent. Some people feel like because they’ve got a 17p they need to jump into treatment sooner rather than later.

I will tell you I have several patients with 17p deleted CLL that I’ve been able to watch for years and years and years without treatment. The indications for starting therapy really remain the same. If I see somebody clearly heading towards treatment with a 17p I may start them a little bit earlier, but again some of these folks can be watched and wait quite well.

Andrew Schorr:
Okay. You’re a director of research, and we’re starting to hear about CRISPR or gene editing.

Dr. Sharman:
Yeah.

Andrew Schorr:
So do you think this gene editing will play a role in CLL?

Dr. Sharman:
Hoo, boy. You know, I think that probably dovetails with the question you didn’t ask, which is about CAR‑T cells. I think CRISPR, for members of the audience who may not be familiar with it, is a highly efficient, highly directed way of making genetic manipulation within cells,

and with a lot of the gene therapy that’s been done over the years we sort of randomly insert genetic material into cells to sort of reprogram them. That’s sort of the classic way of doing gene therapy. The problem with that is there are parts inside the genome that don’t like to be broken, and so the field really was set back a number of years when there were some early cases of leukemia caused by gene therapy.

And so what CRISPR does is it does allow you to make very targeted genetic modifications so that you can precisely put in new genetic material sort of wherever you want it. And I think that in the context of CAR‑T therapy there’s now goals to make it much more off the shelf than this sort of highly manufactured thing, and that’s where I would see CRISPR having the most likely early role.

Andrew Schorr:
Okay. So CAR‑T, chimeric antigen receptor T‑cell therapy, taking a virus, I think, and combining it with stuff for your T‑cells, targeting your CLL. So Lynne just asked, she’s 71, would somebody older like that‑‑tomorrow is my 68th birthday, folks‑‑would we be candidates for CAR‑T should we need it?

Dr. Sharman:
Well, I need to articulate some of my limitations as a community practice oncologist, thus far the CAR‑T research has been sort of in the exclusive purview of academic centers, so I haven’t had the chance to do it yet. That having been said, we are working with a variety of sponsors to get such a program up and running.

However, I will say there’s a lot of enthusiasm in CLL because the original New England Journal of Medicine paper that described CAR‑T was done in both pediatric acute leukemia and adult chronic lymphocytic leukemia, and it is now approved by the FDA for the pediatric ALL, acute lymphoblastic leukemia. It is not approved for CLL. And part of that‑‑there’s a lot of reasons why it doesn’t work as well in CLL as it does in other diseases, and I think that the‑‑it’s okay that this is moving a little bit more slowly in the CLL field because I think we’re getting a lot of benefit of accumulating knowledge in how to make it work best in CLL. I think it will become an important therapy in CLL.

Keep in mind that the toxicity of chimeric T‑cell is significant, and the possibility of neurotoxicity or this syndrome that looks a little bit like sepsis that’s not sepsis but it looks like it in a lot of ways, what we call cytokine release syndrome make this a therapy where caution is advised.

And so if it’s something you’re thinking about I would say go get yourself seen in your very specific circumstances with somebody doing this in research studies and decide if it’s right for you.

Andrew Schorr:
Okay. And we’ll have‑‑in other programs we’ll talk about CAR NK research that’s going on. Lot to talk about, maybe at ASH, folks. Dr. Sharman will be at the American Society of Hematology meeting, the ASH meeting here in San Diego in a couple of months. We’ll have coverage from that as these new areas come out.

Now let’s go back to the basics before the end, Jeff, and this that is flu season coming up.

Dr. Sharman:
Yes.

Andrew Schorr:
And there’s also a shingles vaccine. And also some people related to hepatitis B.

What are you telling your patients about vaccines? My friend Jeff Folloder said somebody at MD Anderson had them maybe getting two flu shots.

Dr. Sharman:
Yeah.

Andrew Schorr:
So first of all, flu shots, and do we need more than one? And what about these other shots?

Dr. Sharman:
Yeah, so starting with flu I would encourage all my patients CLL patients to get flu shots. The response is nearly universal. Everybody always says, well, I got a flu shot and I still got sick. A flu shot does not prevent all illness. Flu prevents flu. And patients with CLL get more complications from flu because their immune system has a cancer in it. So CLL is a cancer of the immune system, so to whatever extent you can give yourself a head start to fight off flu I would encourage patients to do so.

Andrew Schorr:
More than one shot?

Dr. Sharman:
Well, so I will say that patients with CLL generally have less of a response to a flu vaccine than somebody without CLL.

So you don’t get as much protective benefit if you have CLL as somebody without it. I don’t think, at least, I’m not familiar with data that says two flu shots are better than one. It may be out there and I’m not aware of it, but I mean I could understand why you might. It at least biologically makes sense.

Andrew Schorr:
And the shingles vaccine?

Dr. Sharman:
Yeah, so very few clinic days go by where I don’t curse shingles at least once. For anybody who has had shingles you know it can hurt really badly, and there is this condition called post herpetic neuralgia, which is a sort of a lingering pain syndrome that can go on for years for patients who have had shingles and can be a life altering pain. And so, again, I think whatever head start you can give your immune system it’s worth doing.

And I guess the reason why I curse shingles so frequently is because it does seem to go part and parcel with lymphomas and CLL. Again, you have a cancer of the immune system. The immune system doesn’t work as well, and, boy, I can’t count the number of times where somebody gets shingles just as their CLL is acting up and then it delays treatment, or somebody is going through treatment with a lot of pain as a result.

Andrew Schorr:
So you’re not worried about the vaccine?

Dr. Sharman:
No. Not only am I not worried I highly encourage it. But I would point out that the old vaccine was a live virus, and there were problems giving that to patients with CLL. There is a new dead virus, Shingrix, that’s in short supply.

Andrew Schorr:
Okay. Well, we’re going to wrap up. I want to just help everybody understand what I alluded to a minute ago, the world series of blood cancer‑related discussions where a lot of data, and, Jeff, you may have data presented there, is the American Society of Hematology meeting which is near me in San Diego in December and about 30‑, 40,000 people come and discuss all this.

So stay tuned. We’ll be doing programs from there, and we’ll bring you updates. Dr. Jeff Sharman, thank you so much for being with us once again.

Dr. Sharman:
My pleasure, Andrew. Thank you for your time.

Andrew Schorr:
All right. And this is what we do. Thanks to the Patient Empowerment Network so devoted to this. We’re happy to help from Patient Power, and thanks to the supporters for this program. They had no editorial control, but they believe in education. That’s AbbVie Incorporated and also Pharmacyclics.

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.

CLL Expert Roundtable

At the 2016 American Society of Hematology (#ASH16) Conference, a panel of CLL experts were interviewed about what’s new and exciting in the field of CLL. This panel included:

  • Philip Thompson, MD, Assistant Professor Department of Leukemia, Division of Cancer Medicine at The University of Texas MD Anderson Cancer Center
  • George Follows, MA, BM, BCh, PhD, FRCP, FRCPath, Consultant Hematologist at Cambridge University Hospitals
  • Jeff Sharman, MD, Medical Director, Hematology Research at The US Oncology Network

Check out the full video below to hear from three CLL experts:

ASH 2016 CLL Expert Roundtable from Patient Empowerment Network on Vimeo.

What Records Should You Bring For A Second Opinion Appointment?

From the Lung Cancer Town Meeting in September 2016, Janet Freeman-Daily interviews a panel of lung cancer experts about what are the essential records patients should bring to their appointment when getting a second opinion. The panel includes the following experts:

  • Nisha Monhindra, MD Assistant Professor of Medicine, Hematology/Oncology Division, Feinberg School of Medicine Robert H. Lurie Comprehensive Cancer Center of Northwestern University
  • D. Ross Camidge, MD, PhD, Director Thoracic Oncology Clinical and Clinical Research Programs University of Colorado Denver
  • David D. Odell, MD, MMSc, Assistant Professor, Thoracic Surgery Robert H. Lurie Comprehensive Cancer Center of Northwestern University
  • Timothy J. Kruser, MD, Assistant Professor, Radiation Oncology Robert H. Lurie Comprehensive Cancer Center of Northwestern University

Check out the full video below to hear all of the experts advice.

What Records Should Your Bring For A Second Opinion Appointment? from Patient Empowerment Network on Vimeo.

Getting A Second Opinion From A Rural Location?

From a Town Meeting in September 2016, Janet Freeman-Daily interviews a panel of cancer experts about how patients in rural or remote locations can get second or multidisciplinary opinions from larger facilities or academic institutes. The panel includes the following experts:

  • Nisha Monhindra, MD Assistant Professor of Medicine, Hematology/Oncology Division, Feinberg School of Medicine Robert H. Lurie Comprehensive Cancer Center of Northwestern University
  • D. Ross Camidge, MD, PhD, Director Thoracic Oncology Clinical and Clinical Research Programs University of Colorado Denver
  • David D. Odell, MD, MMSc, Assistant Professor, Thoracic Surgery Robert H. Lurie Comprehensive Cancer Center of Northwestern University
  • Timothy J. Kruser, MD, Assistant Professor, Radiation Oncology Robert H. Lurie Comprehensive Cancer Center of Northwestern University

Check out the full video below to hear all the experts advice.

 

Getting A Second Opinion From A Rural Location? from Patient Empowerment Network on Vimeo.

Coping With a CLL Diagnosis

Interview with Tina Sapienza, LMSW, OSW-C, Oncology Social Worker Columbia University Medical Center and Nicole Lamanna, MD, Associate Clinical Professor of Medicine Columbia University Medical Center

Andrew Schorr interviews a panel of CLL experts about coping with a new diagnosis and all the feelings associated with that. Watch the full video below to hear from the CLL experts.

Coping With a CLL Diagnosis from Patient Empowerment Network on Vimeo.

Encouraging The Conversation

Interview with Nicole Lamanna, MD, Associate Clinical Professor of Medicine Columbia University Medical Center

Esther Schorr, care partner and patient advocate, interviews Dr. Lamanna about how patients can best interact with their health care professionals to get the best treatment they deserve. The pair then discuss what the best approach for patients who do not live near a CLL specialist, such as Dr. Lamanna. Check out the full video below to hear from a CLL specialist.

Encouraging The Conversation from Patient Empowerment Network on Vimeo.