Afternoon Session: Accessing State-of-the-Art CLL Care

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Topics include: Living With Chronic Lymphocytic Leukemia

The afternoon portion of our recent chronic lymphocytic leukemia (CLL) Town Meeting in Cincinnati, Ohio features CLL patients John Binz and Dave Kasanicky and care partner Lynnda Kasanicky discussing the impact of living and raising a family with a chronic cancer. This program also contains Q&A session with a dynamic panel of experts, including blood cancer specialist Dr. Edward Faber, community oncologist Dr. Mark Marinella, nurse navigator Amy Sheldrick, nurse practitioner Lisa Ovesen and financial navigatorAlison Mulholland. Watch now to learn their perspectives about living with CLL. 

This program is sponsored by AbbVie, Inc, Genentech, Inc and Adaptive Biotechnologies. These organizations have no editorial control. It is produced by Patient Power in partnership with The Leukemia & Lymphoma Society (LLS), CLL Society and OHC (Oncology Hematology Care). Patient Power is solely responsible for program content.

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Transcript

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. 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.

Jeff Folloder:

Welcome back. That was an awful lot of information to digest and we still have a lot more information to go. I’d like to tie up just one more part of the whole clinical trial discussion that we were having. I want to point out that OHC is the only CAR-T cell clinical trial program available for adults in Cincinnati. Dr. Faber, tell the folks here a little bit more about how they can access that.

Dr. Faber:        

Sure. They’re on our website like many other centers. There’s information regarding our CAR-T program, phone numbers and emails on how to connect with our office and our hospital, Jewish Hospital, that we perform those at, and then as well as information about our clinical trial program, so thank you.

Jeff Folloder:   

Now, we’ve got a lot more people on the stage here. This is sort of like a Thanksgiving dinner table now. I can see all the way down there. First up, I’d like to have a little conversation with John Binz. I’ll give you a little bit of detail about what he has gone through in a while and then I’m going to ask him to share with you how he’s dealt with a lot of what’s going on. John was diagnosed in 2006 while caring for his wife, who was dealing with ALS at the time. So, I like to operate under only one healthcare crisis at a time in my household. John did not have that luxury. 

He’s been in remission for almost 10 years, until last year like me he had a recurrence and now he’s on Ibrutinib. John loves camping and fishing. The reason why I’m sighing right now is because I know that fishing is just an excuse to drink beer, right? See? Fishing and camping is one of the most relaxing things a person can do, so I agree with you. It’s a wonderful thing, and don’t ever stop doing it. You have a life motto; take it as it comes. Tell me about that. Tell me about your story and why you decided you’ll just take it as it comes.

John Binz:       

Back in 2006 I was caring for my wife, who had ALS, and I was diagnosed with CLL. Boy, that’s a lot of letters. XYZ and T and whatever you know, but I had to put off treatment until her disease ran its course. Anyhow, after my wife passed away I waited several months before I even considered treatment. I had to get to my stuff together and everything like that. Life throws a lot of hard licks at you. If you’re lucky enough to be standing once you get hit just keep on going with it. 

Jeff Folloder:   

Sounds like a plan. Losing your partner, your loved one, your spouse is a difficult and almost insurmountable stumbling block in your life. How did you reconcile the need to get past that and start living again?

John Binz:       

Well, I came to the realization that life goes on either with or without you. I do have a younger daughter and a granddaughter whom I have to live for, so I had no choice.

Jeff Folloder:   

Tell me about your treatment. You’re now on ibrutinib (Imbruvica). Are you experiencing any side effects?

John Binz:       

Yes, fatigue and sometimes nausea. If I don’t have enough to eat in my stomach when I take my daily med I suffer the nausea, and the fatigue seems to get a little worse. It seems to me that if I’ve got a full belly when I take it everything runs fine.  

Jeff Folloder:   

Outstanding, and I heartily endorse the concept of a full belly, but not too full. Would you have done anything different in your treatment program?

John Binz:       

I really can’t say that I would have. I just had to totally trust Dr. Essell.

Jeff Folloder:   

Sounds good. We have a couple onstage, Dave and Lynnda. I had the good fortune of having dinner with them last night. We had a lot to discuss. One of the things we giggled about was the concept of team treatment, spouses being involved together in the treatment program. What I’m going to do right now is I’m going to tell Dave that he can’t say a single, solitary word for a few moments. Lynnda, you’re the caregiver, right?

Lynnda Kasanicky:      

Yes, I am. 

Jeff Folloder:   

Your husband being a typical male, he was completely and totally truthful and forthcoming with his doctor visits, correct?

Lynnda Kasanicky:      

In his mind, yes.

Jeff Folloder:   

Tell me about that.

Lynnda Kasanicky:      

Dave is always—he never wants to worry anybody or doesn’t want to complain about it, so as far as Dr. Essell would say; as far as your pain that you might be on or whatever it’s like, eh, it’s not too bad. Earlier in the day he’s like; oh my gosh, I’m in such pain from my spleen, or whatever the case may be, so he downplayed it just a bit. 

Jeff Folloder:     

Just a bit; so without trying to incite a riot here, doctors and nurse practitioners and nurse navigators, the first question that you ask of patients when you’re seeing them in clinic is something along the lines of, “How are we doing today?” We’ve got nods going on. What is the typical male response to that question?

Male Speaker:  

I’m fine.

Jeff Folloder:   

Thank you. Lynnda, they’re not fine, right? 

Lynnda Kasanicky:      

No, they’re not.

Jeff Folloder:   

Okay. Let’s go into a little bit of detail about what “not fine” is. What are things that you as the caregiver need to make sure that the medical team knows is going on? 

Lynnda Kasanicky:      

Well, you know the fact that he was fatigued all the time; he would get home from work, have dinner, and he would be out cold for the night. It kept getting worse and worse as he was in the wait-and-worry stage and his spleen started bothering him a lot, I mean to the point where he was in a lot of pain. That’s definitely something that Dr. Essell needed to know. The good thing about Dave, though is he did a lot of research on that, so he would go into his appointments armed with questions. He’d have questions written down and that, so that was a good thing. He would always downplay the negative things that he was going through.

Jeff Folloder:   

Of course. We’re going to let you talk a little bit now. Tell me about what you love doing right now. What are your favorite things to do?

Dave Kasanicky:          

Right now I guess my favorite things really as John said is John said is just living. In an interesting way this disease has made me realize that old cliché of live in the moment. It’s never been more accurate in how I’ve dealt with the disease and how I deal with my daily life. I very much enjoy playing golf, and I’ve found golf was the one time—even when I was going through treatment—that enabled me to just forget everything and just be in the moment. The one thing I’d suggest to anybody going through this is find that thing that makes you forget everything and be in the moment because it takes the stress, the anxiety, and everything away. 

Jeff Folloder:   

Expand on that a little bit. Tell me about how you achieve a quality of life that is acceptable to you, because it sounds to me like you have a more-than-average expectation of what living well is all about. 

Dave Kasanicky:          

I don’t know how to actually answer that question. I made the comment listening to everybody here. It was in many ways a trip down memory lane because it’s been 12 years for me. Some of the comments that were made in some of the discussions just brought back memories, a lot of them good and a lot of them bad. My expectation is just that. John said about his daughter and his granddaughter; look around, find something that is important to you—whatever it may be—and that is what you want to live for. That’s what you want to look towards. You can’t change the disease. You can’t change the progression of it, but what you can change is how you deal with your day-to-day life.  

Jeff Folloder:   

Do you have children?

Dave Kasanicky:          

One daughter. 

Jeff Folloder:   

I’d like to ask a question of you that can be somewhat of a delicate subject for many of us. How did you tell your child about your cancer?

Dave Kasanicky:          

Initially we didn’t. At that time she was in fourth or fifth grade and we were obviously in the watch-and-worry stage. Lynnda and I made a decision that; why worry a small child about something that may not happen for a few years? In my case I think it was three or four years before treatment, but when we did tell her we sat her down and at that time she was 15. I explained to her what I had and I really told her what CLL is, and I said I apologize but we didn’t tell you initially because—and I explained to her why—and I told her some of the impact. Like Lynnda said, I was always sleeping, to which her comment was, “I just thought you were lazy and mom was doing all the work.” 

That was a tough thing to tell your child, but we’re fortunate enough to have a child I think who really—I know she was worried but she didn’t say it. In some sense she’s much like me, but she really then became a supportive caregiver too. 

Jeff Folloder:   

What treatment have you gone through?

Dave Kasanicky:          

I had FCR or FRC What is it?

Jeff Folloder:   

FCR.

Dave Kasanicky:          

I had that, and something that Dr. Faber said, and I’ve made this comment many times in talking about Dr. Essell, whom I also have; I went to Ohio State, at James and had a FISH panel. In my thing you’ll see that I had, they found I think it was seven or eight percent of my cells had the 17P deletion. Dr. Lin, who was at Ohio State, said, “Well, I know it’s under the low end.” I think it was 15 to 16 percent that had a truly adverse impact on your life, but he said, “Your cells have it so you have it.” That was the longest drive from Ohio State to Cincinnati. I don’t think we said two words to each other because right now I’m dead in 18 months. That was the only thought I had.

I came to see Dr. Essell and he—he opened the window and he looked out and he said, “Man, it is really cloudy.” I kind of looked at him and he said, “You probably don’t think so. That’s what this test is all about. It’s a tool, and it’s a tool that I read about and like Dr. Faber said; my job is look at you as a patient and as an individual. The biology of you is going to tell us the progression and the treatment of the disease. When I heard the term, “art” I realized that that’s what he was practicing, was the art of a practitioner. My suggestion to any of you, and John said the same thing, is I trusted Dr. Essell with my life and I still do. I have all the respect in the world for him because what I saw in him was somebody that saw me as an individual and somebody that saw my disease as an individual disease.

Jeff Folloder:   

Excellent. I mentioned earlier at the beginning of the program that we are a community. These town meetings bring CLL patients and their caregivers together. We have so many ways to get together in this world that we live in now. We have these meetings, which are great. We have in-person support groups like are provided by CLL society and The Leukemia & Lymphoma Society, great support groups. Most of us are probably walking around with Smartphones and we have access to social media and there are literally hundreds of CLL support groups available to each of us to consume as a buffet as it were, as little or as much as we want. 

What I find really amazing is this gentleman sitting down at the end of the aisle over here. John doesn’t do any of that internet stuff. Am I right?

John Binz:       

Yeah.

Jeff Folloder:   

Do you have an email address?

John Binz:       

I have an email address on my phone, but I don’t have the internet at home. I don’t have a computer in my house. 

Jeff Folloder:   

So, you don’t know what the latest Facebook trends are? 

John Binz:       

No. 

Jeff Folloder:   

And you probably don’t care.

John Binz:       

No. You know I’m proud of that fact. 

Jeff Folloder:   

Yet, you’re still here sharing your story with us because why? Why are you here?

John Binz:       

Because I really have no choice. I mean that sounds funny, but like I said I have other people I have to live for. I have no choice, but I have to live. 

Jeff Folloder:   

Dave, talk a little bit about your advocacy. I know that you try to give back to the community and give back to other people that are going through this not-so-pleasant road of CLL. What do you do?

Dave Kasanicky:          

Well, it’s just not CLL; it’s any cancer. It’s really to share my experience, my anxiety, dealing with Dr. Google, and the thing that anyone going through any cancer—and again I’m speaking from my experience—is that when you first tell friends and family all of a sudden it’s this weird feeling. It’s like this wall all of a sudden comes up. Everybody walks on eggshells. With myself and also other people who are dealing with it and trying to talk about their cancer, which I would suggest that with some people it work, I have used a morbid sense of humor about my mortality and about my disease. I have found that laughing about the disease, about the experiences that you will face or may face allows people to relax around you. 

That’s what I needed, was for people just to be relaxed around me and not feel tense. My advocacy with anytime I meet with people like that is to make them try to laugh and realize that as John said, live the life that you have now.

Jeff Folloder:   

Excellent. I’d like to echo your morbid sense of humor with a personal experience that I’d like to share with everybody online and here in the audience. Is anyone familiar with the term, “playing the cancer card?” Okay, we’ve got a couple of hands. In general, people who don’t have cancer will point the finger at people who have cancer and say, “You’re playing the cancer card. You’re trying to get something special. You’re trying to get an extra benefit.” So, along the lines of this morbid sense of humor three days after I was diagnosed with chronic lymphocytic leukemia I found myself in Houston, Texas at Citizens for Animal Protection. It’s a pet shelter. I decided it was time for us to not have one cat in the household. It was time to have two cats in the household.

I was strolling through Citizens for Animal Protection and I came across this cute little male brown tabby cat, and that cat stuck its paw out of the cage and made me stop walking. I was like; okay, this has pretty much been taken care of. So far so good, right? I was told that I could take the cat out of the cage. I took the cat out of the cage. We were playing. I was petting it. It was purring. It was all wonderful. It was a tiny little thing. I decided; okay, I’m going to go ahead and adopt this cat. 

Now, understand I have been to Citizens for Animal Protection before. We adopted our first cat from there. I made no equanimity. I started the process with this very helpful person, and she tells me; I’m sorry this isn’t instantaneous. We have rules and regulations. Okay. We have to call your wife. We have to make sure that this okay. I have all these check boxes to do. It was a whole list of things, and I was getting very annoyed and agitated. I decided three days into my cancer survivorship it was time to play the cancer card. So, I did just that; I raised my voice just a little bit and so everyone could hear I said, “Ma’am, I just got diagnosed with leukemia, and this kitten’s name is Leuk, L-E-U-K. I’m adopting this kitten today.”

She leans over and she whispers in my ear, “You will get it fixed, right?” Yes, ma’am. I now have Leuk as my caregiver. Now, I love Leuk to death. He’s a wonderful, brown tabby cat. I mean he’s very affectionate, purrs instantaneously, and he has swelled up to about 19 pounds. And he’s as dumb as a box of rocks, but he’s my cat and every night when I lie down in bed he will come up my left side, head-butt my fist, make sure that I’m okay, drape himself across both of my ankles and go to sleep. 

If I try to flip over, it’s a bit of an issue. Morbid sense of humor? Yes, I absolutely get it, because we have to find some way to deal with this. There are still some doctors and there are still some medical providers that will offend us by saying, “At least you have the good cancer.” There’s no such thing. There is no such thing as a good cancer. We have cancer and I love that these folks now on this panel have figured out a way to accept that they have cancer and live very, very well, but there’s a big “but” along with this, and that’s what I need to talk to Allison about.

A lot of this stuff is expensive. FCR may be old school, but it’s not cheap. A day in the ambulatory treatment center is not cheap. These novel molecules that we’re coming up with; some of the price tags come in at $10,000, $12,000, and $20,000 a month. How do you deal with this? Well, you get a microphone?

Amy Sheldrick:            

That helps, and then it’s when all of the great foundations and even some of the drug companies can assist. 

Jeff Folloder:   

How do people get access to those? I mean we have people on the CLL support group on Facebook all the time saying; I have no idea how I’m going to come up with the co-pay.

Amy Sheldrick:            

They don’t because until you are diagnosed or have a loved one, you don’t know the resources out there, because you’ve never had a need for them. Then, once you do have that need you have to connect somehow, either online or in your doctor’s office or with other patients to find out where the resources are and how to get signed up for them.

Jeff Folloder:   

Do most health centers have some kind of liaison, the role that you provide, to assist patients?

Amy Sheldrick:            

OHC does and in most of our offices—all of our offices—we have a financial counselor, and we meet with all of the patients before they start treatment to guide them down this path, to help them get signed up to do the applications, to fax the papers in, to get what we need from the patients, to get them the grants going, or if the grants aren’t available, then we go to the drug companies to see if they’re eligible for free medication.

Jeff Folloder:   

Would it be safe to say that any patient who is dealing with a financial hardship should always ask the medical providers for assistance? 

Amy Sheldrick:            

Always tell your doctor. Some patients don’t like to tell their doctor or nurse that they can’t afford something, but usually they are prescribing those medications, because you need them. I always tell the patients to call us. If it’s too high for you, call us and let us know that so we can see what’s available.

Lisa Ovesen:   

Also, we have patients who think; oh, I have too much money. I’m not going to be approved. When you’re talking about $20,000 or $30,000 a month a lot of these foundations and programs from the drug company have high-set levels, because especially in CLL we’re not talking six months of treatment. We’re talking 10 years of treatment, so it’s always good to speak up and ask those questions, because there might be funding out there.

Jeff Folloder:   

Excellent. Dave, I know that you took an extra rigorous approach to the financial side of your treatment. What are some tips that you can offer folks for managing the cost of treatment; making sure they have the right insurance in place, making sure that they have the right access to care?

Dave Kasanicky:          

Well, I’m not really aware of that. We were fortunate enough, because I’ve been self-employed for 25 to 28 years, so all of our benefits come from my wife, who was fortunate when I was going through treatment to work for a very, very large corporation. They had plans from bare minimum to Cadillac, so we were fortunate enough at the time to sign up when I was diagnosed and obviously new enrollment came so we took the top, which is a good thing because I went through treatment. The bad thing was as soon as I finished treatment three months after that, they decided to eliminate her job. 

I found out very quickly, and it’s not very good for the ego, that COBRA doesn’t allow you to back down. Where you end is where you pay. At that time our monthly bill was almost $3,000 a month. I had just gone through treatment. I worked for myself, so I wasn’t doing a lot of work. She was pretty much on unemployment benefits and it became very expensive. I found out last night that we actually could have reached out to get some of that COBRA covered. The thing I guess I will say to this is reach out to your financial navigators, because they can find ways to pay for this. 

Jeff Folloder:   

It’s good advice. It’s time to begin the question-and-answer session. If the folks here have questions, make sure you get the question sent to the back desk over there so that they can get fed to me. For those of you online, please remember to send your questions to CLL@PatientPower.info. That’s dot I-N-F-O. Now, we already have a lot of questions queued up. We’re going to try to get to as many as we can, and I’m going to try to go down the line here. I’m also going to probably demonstrate that I’m in my mid-50s, so my arms aren’t quite long enough. The first question is for Dr. Faber. I’ve heard that CLL is an old person diagnosis, but it feels like a lot of younger people and younger folks are getting diagnosed. Is this happening earlier to us, or are we just better at finding it? 

Dr. Faber:        

The simple answer to that is we probably are seeing it earlier because we in the medical community, I in the community like to think that we have better access to routine primary care surveillance and preventative medicine. During residency I remember you would meet folks in their 60s and 70s and it was; when is the last time you saw your doctor? I don’t know; 50 years ago. Now, a simple CBC can tell us a lot. When you start to see that white count drift up and that lymphocyte count get above five that usually triggers the diagnosis. We probably do see it more often. I’d be interested to look, and I don’t know what the answer is that we diagnose it earlier and that watch-and-wait or worry approach; that might be getting more and more because I have a sense that in decades past CLL was probably there in our patients. It just didn’t bring them to medical attention until later in life.

Jeff Folloder:   

Fair enough. Dr. Marinella, there is a great question from Joyce. Most of the time when we get diagnosed with CLL we get told that it was a random genetic mutation. Joyce wants to know; is there any hereditary connotation to CLL? Is it familial? Can you get it from your father?

Dr. Marinella:   

The majority of cases are sporadic probably due to an acquired mutation of a chromosome abnormality or a mutation of a gene or something called a SNIP, a change in the signal of nucleotide polymorphism. However, I think about nine—if you have a first-degree relative with CLL your chances of getting CLL yourself are several-fold higher, and if you have a family history of someone in your family I think your rate is—gosh, I was reading something on this yesterday. There is a higher risk. I don’t want to throw the number out there, but I’m think that if you have a first-degree relative it’s like nine percent and if you have anyone in your family your risk is higher, but that doesn’t necessarily mean that it’s a genetic, familial syndrome like Lynch syndrome or Li-Fruameni syndrome, because higher risk of cancer in a relative; it’s so complicated it’s not always when we think of inherited disease. It’s a higher risk factor just because the genetics are so complex, but yes there is a higher risk. 

Jeff Folloder:   

Lisa, I have a question for you. We all know treatment can make the digestive system go a little wonky, but treatment aside; do you see an increased level of gastrointestinal issues with CLL patients? 

Lisa Ovesen:   

I thought you said the hard questions were going to go to Dr. Faber.  

Jeff Folloder:   

Sorry about that. 

Lisa Ovesen:   

I think it depends upon lymph node involvement and if a patient has a lot of affected lymph nodes in their abdomen. If you see people have splenomegaly, an enlarged spleen, you might see that type of thing. I think it just is very much dependent upon the patients. Do I have the sense that a lot of my patients come to me at baseline with GI problems? I would say no, but I think it’s very individual.  

Jeff Folloder:   

Thank you. Dr. Faber, M.J. wants to know as someone diagnosed with CLL with 17P deletion he or she—I’m not sure which—they see a lot of info and patient response on using the drug Imbruvica but not so much on venetoclax (Venclexta). Can you clarify which drug may be best to use for patients with the 17P deletion? 

Dr. Faber:        

I think if we take a quick review of the literature as it stands now, Ibrutinib really came onto the scene as having good responses and durable responses for many patients. The subset analysis, which is always kind of a dirty term—in a trial, when we try to get information from a trial that wasn’t the original intention, but nonetheless for frontline or even second-line, say those folks with 17P, certainly ibrutinib is probably our first choice. Then, our patients who might be transplant candidates we should still have consideration at least for an evaluation at that point.

Jeff Folloder:   

Excellent. Dr. Marinella, one of our viewers online wants to know; is it important to do the IgVH mutation test on newly diagnosed CLL patients that are asymptomatic except for fatigue?

Dr. Marinella:   

Maybe. I think it depends. I probably see a couple of CLL’s a month. The classic one is that someone who is 65 or 70 went in for a CBC and the white count is high, you set up a consult, and it’s a pretty for the most part easy diagnosis for us to make by looking at their counts and making an educated guess. If somebody is totally asymptomatic, then the fatigue is probably somewhat disease-related, but the median age of 72 or even for some people a little bit younger fatigue can be due to beta blocker drugs, it can be due to life, or it can be due to other co-morbidities. 

If somebody looks like they’re not going to need to be treated, and they’re stage 0 or I clinically I don’t automatically send it off because the standard in early stage CLL is observation, watch and learn and watchful waiting. If I need to get it to make a decision I can and usually there’s pretty good turnaround. I sometimes will get it in a younger person—I’ve had a couple of people in their 30s in my practice before—and I might but the presence of it in a patient you wouldn’t treat otherwise doesn’t make you treat sooner.  

You don’t treat based on a mutation, but if you think somebody is moving towards therapy or if they present with advanced-stage disease, yes because in a fit, younger patient with the rigors of FCR it helps to make a treatment decision. And it also has the prognostic implication too, because the mutated do better. So if you’re a mutant, you’re in good shape. 

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Page last updated on August 20, 2019