Relapses in CLL: Allaying Fears and Taking Action

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In part two of our Partners program, Patient Power founder Andrew Schorr is joined by two others living with chronic lymphocytic leukemia (CLL) Carol Preston and James Miller to discuss treatment response and the fear of relapsing with patients who have endured various cycles of therapy. The patients share their experience while Dr. Nitin Jain, from The University of Texas MD Anderson Cancer Center, provides an expert perspective on remission duration, relapse and retreatment in a changing CLL treatment landscape.

This program is sponsored by Pharmacyclics. This organization has no editorial control. It is produced solely by Patient Power.

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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.

Andrew Schorr:

Hello, and welcome to Patient Power. I’m Andrew Schorr, today in Portland, Oregon, and this is a program we call “Partners,” where we’re talking about how patients and medical professions work together. Specifically, we’re talking about CLL and when there is a relapse or where CLL has raised its head again. And, it’s happened to me. I’ll share my story. Over many years, I’ve been treated twice. You’re gonna meet two other patients who are friends of mine. First, let’s go to Rockville, Maryland and our dear friend Carol Preston. Hey, Carol. Thanks for being with us. 

Carol Preston:

Well, thank you, Andrew. It’s always a joy and a pleasure to speak with everybody. Do you just want me to say hi, or shall I ?

Andrew Schorr:           

“Hi” is great, and just so we get a little snapshot, you were diagnosed with CLL in 2006, right? And, you went onto what was kind of an older regimen, right?

Carol Preston:

I went on an older regimen, which is initialed as CVP+R. I would say probably the vast majority of your audience wouldn’t even know what that is, save the prednisone part and the rituximab (Rituxan).

Andrew Schorr:           

How long did that last?

Carol Preston:

It knocked it back very quickly—that was the good news—but it lasted only about three and a half years.

Andrew Schorr:           

Okay. And then, you had what has been standard for so long—FCR, fludarabine (Fludara), cyclophosphamide (Cytoxan), rituximab—and that worked, right?

Carol Preston:

It has worked so far. It’s mind-boggling to think that it’s coming up on nine years since I wrapped up treatment with FCR. So, for that, I feel very grateful.

Andrew Schorr:           

Right. But, you don’t know whether you’re cured, so there could be something else.

Carol Preston:

I would suspect that I’m not because—and, we can get a little bit into this later—because of the second primary cancer that…

Andrew Schorr:           

…you developed a sarcoma and had treatment for that.

Carol Preston:

Yeah. The sarcoma expert at—I’ll say Johns Hopkins Medical because that’s who’s following me right now – feels very strongly that the CLL played a role.

Andrew Schorr:           

Oh, okay. All right, let’s go to California from Maryland to my friend James Miller in Palaceries, California. Hi, James. Welcome to the program.

James Miller:   

Hi. How are you?

Andrew Schorr:           

I’m good. I’m happy today. So, James, let’s see if I have your story right. So, first of all, you were a practicing attorney in Los Angeles in a law firm, have a routine blood test in 2010, and then find out something’s out of whack, and at Christmas dinner, you’re told—no, 2005. Which year was it?

James Miller:   

It was 2005 at Christmas. I went in for a general physical, and then, at Christmas dinner, when I’m about to toast everybody, the doctor called. It was a Sunday night, and that just never happens. He called me and informed me I had something called CLL. And so, from there, the journey began.

Andrew Schorr:           

A lousy Christmas present. Okay, so, you went several years before you had treatment, and then you did have the FCR, like I’ve had and Carol had. Typically, people would have six cycles. You just had three, right? And then, it didn’t last.

James Miller:   

Yeah. Well, an intervening fact was after I got diagnosed in 2005, I was on watchful waiting for five years, until 2010. In 2010, I acquired a 17p deletion. At that point – which, as I understand it, is the worst form of CLL—and I became a—I won’t call it—an “experimental patient” or whatever. I’m No. 8 of eight experimental patients, or whatever they call them.

Andrew Schorr:           

Clinical trial patients.

James Miller:   

Clinical trial patients, right. I still am, up to this day. So, I’ve been given a number of treatments that are outside the norm.

Andrew Schorr:           

Okay. So, you’ve had FCR, but you’ve also had a drug that’s called venetoclax or Venclexta, and you were in a trial for that, and that worked for quite a while, and then you were able to stop treatment, and now you’re in treatment after a 14-month interval of no treatment, I believe. You’re in treatment again.

James Miller:   

Yeah. I started FCR—excuse me, Venclexta—and after –six months or nine months, I was…

Andrew Schorr:           

MRD? 

James Miller:   

…MRD negative, FISH normal. He did two bone marrow biopsies—one each in my left hip and right hip—to confirm all that. During this period of time, I believe the doctor indicated that they had, in some of the clinical trials he supervised, some of the patients that went MRD-negative, FISH normal, and they continued to take the drug and built up a resistance to it. So, he took me off the drug, and I was off the drug for about 14 months before it came back.

Andrew Schorr:           

Okay. We should mention—before we meet our medical expert in a second, I just wanna say now, you’re on venetoclax and obinutuzumab, or Venclexta plus Gazyva are the trade names, in combination, and you’re doing well, and you told me you went running today or yesterday.

James Miller:   

Yesterday, I went running. I had a general physical with the same doctor who had diagnosed the CLL originally, and he said, “You need to start exercising, and don’t drink any sodas.” Apparently, they have something in them—7-Ups and Pepsis—that aren’t good for the bones. So, I used to be a runner. That was one of my first loves, and I ran 10Ks and marathons. So, I went out and ran for 20 minutes, and it felt great.

Andrew Schorr:           

Well, that’s great. So, here are two people who have gone through various cycles of treatment, a second cancer in the case of Carol. In my case, I was in the Phase II trial at MD Anderson way back in 2000. It gave me a 17-year remission, but a colleague of the doctor you’re gonna meet in a second, Dr. Weirda at MD Anderson, did an MRD – whether it’s “minimal residual disease” or “measurable residual disease,” whatever you wanna call it—test, and said, “You know, you’re not MRD-negative.”

I didn’t have the result that James had. “Someday, you’re gonna need treatment again.” Well, guess what? After 17 years, I did, and that was with one of the same drugs that James is getting, Gazyva or obinutuzumab, in my case with high doses of steroid, and now I’m a year and a half out, and it’s worked, but I’m not cured.

Carol Preston:

Andrew, before you move on to Dr. Jain, because 17p deletion was mentioned, when I relapsed, I also was found to be 17p deleted, but this is where – and, we’ve talked about this before—I urge all of your viewers and listeners to be very careful about that because what a pathologist reports, which is a blanket 17p deletion, which CLL patients worry about because we wanna be mutated, not unmutated, turned out to be only be four percent of my cell set, and that is what allowed me to be treated with FCR. I’m not sure what it would have been. So, I know we’re not really on the topic of seeking a specialist, but there’s 17p and there’s 17p.

Andrew Schorr:                 

Well, we’re gonna talk about that. Let’s meet our scientist physician who’s joining us. That’s Dr. Nitin Jain, who joins us from one of the top cancer centers in the world, and certainly a big research center, in a big leukemia department. He’s part of it. Dr. Jain is an assistant professor there. Dr. Jain, welcome to our program. 

Dr. Jain:           

Thank you, Andrew, and thank you to all the listeners who are watching this. I’m glad to be here, and I heard the stories from Carol, James and yourself. I think as we discuss what the field—all of you were treated back before the ibrutinib (Imbruvica) and venetoclax era, so at that time, FCR or RCVP early on, Carol—I think those were the standard treatments. But now, things are changing quite a bit, have changed quite a bit, and now we have more and more people receiving ibrutinib, venetoclax, and just a couple days ago, as you may know, venetoclax was approved for the frontline therapy of patients with CLL as well.

So, I think the field has evolved quite rapidly in the last five years, continues to evolve rapidly, and I think overall, the big message—I think we are decreasing the reliance on chemotherapy for patients, and I think more and more patients are getting targeted therapy with ibrutinib and venetoclax, to say some of the names. 

Andrew Schorr:           

Okay. Let’s talk about that for a minute. I know you have others that you’re researching as well. So, first of all, you can’t really predict when somebody’s gonna relapse, right? You can maybe have some factors—maybe if you have the 17p deletion, or there may be other factors, it’s gonna be more aggressive your case. You may not get a remission for as long, although I know the treatments are changing. So, CLL typically is not cured, right? So, frequently, while you might get a long remission like I did, at some point, you might need something else, right, Dr. Jain?

Dr. Jain:           

Yeah, I think that would be a fair statement on average. I think remission in CLL certainly could be very long-lasting, such as with FCR, and you had a 17-year remission, but obviously, your disease came back after 17 years. I think in general, CLL is considered not a curable diseases outside of getting a bone marrow transplantation, which is certainly being used less and less just because of the complications associated with bone marrow transplant.

At the same time, I would say there is this thinking – especially in the young crit patients, who are mutated IGVH, and that’s a specific genetic subtype of CLL. Patients who are young and take FCR chemoimmunotherapy—I think what we have seen the data from Dr. Keating in our group here is that almost half of these patients are remission-free 10-plus years down the line.

Now, certainly, there will be an occasional patient who will relapse after 10 years, but half of the patients are staying in remission, so people will start to use—I was in a meeting with Dr Kanti Rai, and I think to create a functional cure for patients who have not received any treatment in 10-plus years, they’re in remission, maybe we can think that the majority of them may stay in remission. But again, there are no guarantees with CLL.

Andrew Schorr:           

Okay. A couple of other questions for you, and then I wanna go back to James and Carol. You’ve alluded to the changing landscape, as I refer to it, with approved therapies, and then, if you add promising experimental therapies in a university setting like you do, you have a wide range of choices to discuss with somebody related to if and when remission ends, what can we offer you? So, how do you decide with the patient? Is it this? Is it that? Is it that over there? What are you looking at to make those recommendations?

Dr. Jain:           

So, I think in large part, again, if you’re talking about relapsed CLL—so, patients who have had prior therapy and then their disease has come back—I think in large part, that would depend on what your prior therapy was for that particular patient, and also, what the genetic subtype is. For example, we heard about deletion 17p. These days, I think if you are deletion 17p, really, the general thing would be to stay away from chemoimmunotherapy.

So, let’s suppose you had FCR in the past, you have 17p deletion, now the disease comes back after three years or so, which we would expect after FCR if you have deletion 17p, because it generally comes back quickly. I think in that situation, then you’ll start looking at—and, what I discuss with my patients is that right now, ibrutinib is available for our patients, venetoclax in combination with rituximab is available, and those are the top two regimens to choose for.

There are other approved drugs for patients with CLL. There is a drug called idelalisib (Zydelig), which was approved several years ago. There’s a drug called duvelisib (Copiktra), which was approved more recently. But, I think in general practice and in our practice, we rely on either ibrutinib or venetoclax as your first targeted therapy option after you have failed chemotherapy.

So, those are options we discuss—ibrutinib versus venetoclax, the risk profile. One is a lifelong therapy; the other is a time-limited therapy because venetoclax is generally given for one to two years. So, those are the things we discuss with the patient, and at the end of the day, it’s a mutual decision between myself, the treating physician, and the patient what they want to choose for. So, those are the things we think about deciding on the treatment.

Andrew Schorr:           

Okay. Dr. Jain, one other question for you. We all wanna know—if we relapse and you give us one of those treatments—you offer us one of those treatments—does it shoot us in the foot in any way if it stops working and we need something else?

Dr. Jain:           

So, what we know—again, the treatment with ibrutinib or venetoclax—again, when you’re talking about relapsed CLL, the role for chemotherapy would be extremely minimal or very rare these days. In patients who have relapsed CLL, practically, we’re talking about targeted therapies. So, in that sense, if you have, again, used ibrutinib as your first defense against the disease, it works for maybe five years, the disease comes back, has come back. Then, I think venetoclax would be the next appropriate therapy.

And again, these are different. These therapies target different molecules in the cell. So, they target different pathways in the cell. We don’t think of cross-resistance if you use one or the other. So, I think the logical thing would be similar—if, for some reason, you had used venetoclax first, then if the disease were to come back, currently, my choice would be to go to ibrutinib in that situation. It’s for safety. I’d use ibrutinib as your first line, then if it comes back, use venetoclax.

Again, as far as we know, there is no cross-resistance between these drugs, and I think similarly, if you had failed multiple targeted therapies—for example, the patient has ibrutinib and venetoclax—I think at that time, really, the patient should be looking to go to maybe a major medical center, where they have new clinical trials with newer drugs, newer targets. That becomes kind of a tough situation to manage in the drugs available right now.

Andrew Schorr:           

Okay. But, there may be things in clinical trials that you would offer. 

Dr. Jain:           

Certainly, yes.

Andrew Schorr:           

All right. So, I wanna deal with an emotional issue for all of us. So, as I got a couple years past FCR, I tried not to think about the CLL, and I finally got to a point where I wasn’t thinking about it every day, which I had been, and I just went on with my life. But, there’s uncertainty for sure. Even now, I’m a year and a half out from retreatment, and I wonder—I’m getting monthly blood counts, and I’m watching them like a hawk. Should I worry? Carol, how have you dealt over a number of years now with the uncertainty?

Carol Preston:

Similar to your experience, rather than saying I stopped thinking about it—I think there’s not a day that goes by that I don’t think about it several times a day. However, having said that, what I feel that—what I’ve done is compartmentalize it, as we do with so many things. So, there’s a little compartment for the CLL, there’s a little compartment for work, and I also just—I recently retired as a communications consultant, and I would say the most—the longest stretch of time when I did not think about the disease was when I was working.

Since then, I’ve been very busy, including a move, as you mentioned, a week ago. I like to say we’ve moved from total chaos to diminished chaos. “This too shall pass.” But, that’s basically what I do. And, of course, with that second primary cancer, now I need two little compartments. But, my feeling is that once you hit the ground running to figure out what you’re going to do, when you’re going to do it, who you’re going to see—and, that sequence ends a lot easier in theory than it does in practice—that staying in motion, moving toward the next goal, really helped me.

The same held true just a year-and-a-half ago with the sarcoma. I know we’re not talking about sarcoma, but when I found out, I moved as fast as I could to figure out how I was gonna resolve the situation, and five weeks after it was found, I had the surgery and the radiation—only five weeks. So, that’s basically how I deal with the emotion. There’s that expression “If it ain’t broke, don’t fix it,” which means if it’s not an issue, don’t dwell.

Now, there was one little caveat before we hear how James handles it, and that is the last time I saw my hematologist, he mentioned that my B12 level had dipped, and so, I’m just taking the sublingual—a couple over-the-counter sublingual tablets a day, but anything that dips, anything that’s out of the ordinary, suddenly, the brain starts to cogitate, and I wonder, “Is this the start of something else?”

Or, as he asked me, he said, “Have you changed your diet lately? Have you stopped eating meat?” I said, “I’m trying to do more plant-based.” He said, “Start eating some meat.” So, I’m hopeful with the B12 sublingual and eating more meat that that will resolve the question, but –you do your best to push through, but you hit these little bumps.

Andrew Schorr:           

Right. Well, you have grandchildren, I have a grandchild, James, you have five grandchildren, right? 

James Miller:   

Yes.

Andrew Schorr:           

So, James, it started at Christmas dinner, led ultimately to treatment, clinical trials, treatment, remission, treatment again now—you have pills to take and infusions to get sometimes as well. How have you navigated the uncertainty of this? Do you see it as a roller coaster? How do you see it?

James Miller:   

I think Carol probably mentioned it best. You compartmentalize. I’m an expert at it. Being an attorney, I had to deal with a lot of different things. I was a criminal prosecutor in the L.A. DA’s office for three years and private practice, and a lot of demands were being made upon me, so I took one problem at a time, just focused on that, and forgot about the rest until I had to deal with it.

And so, when I was diagnosed, I didn’t really know what it meant. I didn’t know what the word “chronic” meant until a couple years ago. So, it was just something that came up, and I had to show up. And so, my role is not to sit there and worry and try to do my own research or anything. I’ve got one of the best CLL doctors in the world. That was the best thing I did for myself because I did that myself by going online and getting a referral from a local guy. So, the only time I focus in on it is if I have to go do an infusion or have an appointment, that kind of thing.

Other than that, it really has not affected me. I still play golf regularly, I retired in 2014 after 40 years of practice, play golf two or three days a week, now I’m starting to run again as of yesterday, which was a real love of mine in my youth, and I’m just very positive. I don’t sit there and worry. It is what it is. My job is just to simply show up for the appointments. The one counterbalance is it seems that I’m a doctor’s office an awful lot right now because I have—like every CLL patient, I have skin cancer.

I think I’ve had in the mid-50s Mohs surgeries, and I go in for these full body scans every 60 days. One time, he hit me with liquid nitrogen 128 times. And, I’ve had about 55 Mohs surgeries. So, that takes three days. That’s a bit of a burden, particularly when Dr. Kipps’s appointments are down in San Diego and travel like that. That’s the only weight on my shoulders, is just taking away from a little bit of my retirement, if you will. But, on the other hand, it beats the alternative.

Andrew Schorr:           

It beats the alternative. We’ve all said that. Now, you take one of these oral therapies that Dr. Jain mentioned. So, in some conditions, maybe if somebody has a blood pressure medicine or something, you say, “Are they gonna remember to take it?” How good are you about remembering to take your pills?

James Miller:   

Very. I am a personality A type. I take it at breakfast with food, as instructed, every day, and I never miss, whether I’m on a trip—I take the pills with me. It’s very important, and I take the pills first, 8:00 a.m., pretty much every day, and it hasn’t been a problem.

Andrew Schorr:           

That’s great news. So, Dr. Jain, talk to us about the dialogue you have related to goals of retreatment with a patient. Some are infused therapies, some are oral therapies, sometimes oral only, does somebody wanna travel, is somebody retired and close to home, just gardening locally? What kind of conversations do you have with people as you look at this array of things that you could offer?

Dr. Jain:           

A good thing, in a way, is that all the oral therapies or new therapies are kind of a class apart in chemotherapy. In the sense that these are oral therapies, much easier in most senses than chemotherapy, and we are talking some long-term remissions for patients. Whether you’re talking about ibrutinib or venetoclax, the goal is long-term remission. Now, you can further start teasing out what kind of remission you’re talking about. Are you talking about complete remission? Are you talking about MRD-negative remission?

In general, for me, from the patient’s perspective, all these new therapies are quite effective for a majority of the patients. Eighty to 90 percent of the patients will achieve remission which will last several years. So, for me, I think talking to the patient comes down to—as, Andrew, you were pointing out—with venetoclax, it’s a pill, but there is this tumor lysis monitoring we have to do early on, and at MD Anderson, we see many patients who travel from far-off places, so, many times, it’s a bit logistically challenging for them to be here once a week for five weeks because we have to start venetoclax.

And, ibrutinib in that aspect could be a bit easier. Certainly, if you have to have venetoclax, you also have to use rituximab or obinutuzumab. Again, there’s an IV complement to it. So, we certainly discuss, as I said, these logistics aspects with the patients. Obviously, asking the goals of the patient. I would say most of the patients certainly want to achieve remission, want to achieve control of the disease. I would say if they try this, and if you were to say there was a light ongoing continuous therapy versus maybe one or two years of venetoclax—I think that’s what the recommended duration is.

I think many patients may choose time-limited therapy just because they feel that they are done rather than just keeping something forever and ever. But, overall, I think both these therapies—and, as I mentioned, idelalisib and duvelisib are other approved therapies—all the four therapies are overall effective in relapsed CLL for the majority of the patients. So, that’s a much more positive development than what we had before this era.

Andrew Schorr:           

That’s great news. So, let’s talk about having the right team. James, you referred to your relationship with your doctor down the road a couple of hours in San Diego, and that you have great faith in him and the team there, and Carol, you referred to—with your other cancer you developed—how you sought out a major center—in your case, Johns Hopkins—to get a team that you really felt good about. 

And, you kind of alluded to that too, Dr. Jain, when you said with the end of maybe successive remissions, it could be that someone’s situation is more complicated. So, James, what would you say about somebody really seeking out a team that they feel good about that’s knowledgeable in CLL? Carol, I’m going to ask you too—about getting the right team.

James Miller:   

Absolutely critical. When I was first diagnosed back in 2005, I was referred to a local cancer doctor at a cancer center, and I asked him—because I’m not shy—“Well, do you just treat CLL?” No, he kind of—he said, “No, I treat this, this, this, this.” He rattled off 10 different types of cancer, and that was exactly the wrong answer for me.

I wanted somebody who’s a specialist, and I also wanted somebody who’s attached to a teaching hospital, somebody who’d be familiar with the drugs coming down the line, who could potentially get me into trials or whatever. I thought of all of that right up front, and before I had the 17p or anything, so I just went online and put in “world’s best CLL doctors.” Three names came up, and one name was in La Jolla. I asked my local doctor for the referral, he said “Sure,” and then I’m down in La Jolla the next couple weeks, and never regretted that decision.

Andrew Schorr:           

Actually, I just did a check. Probably, in the blink of an eye, Dr. Janussy will be on the—we’re waiting for that. Carol, what would you say to people – certainly, many people are treated in the community with garden-variety, newly diagnosed CLL, and now there are oral therapies that may be prescribed—I don’t wanna say like a blood pressure medicine, and you have to be monitored. Like Dr. Jain was saying, make sure everything is going right. But, when it recurs or recurs yet again, maybe it’s a little different story. What would you say about having the right team?

Carol Preston:

I’m gonna talk about that in a few seconds. I wanna piggyback on something that James said about skin cancers because one of the things about which I felt I was very vigilant, because melanoma is always a very scary potential byproduct of CLL, and that’s what I was warned about, so, keeping covered, slathering the SPF high number on, wearing hats, not sitting in the sun, and, boom! I got a sarcoma. So, we do need to be vigilant. Skin cancer is definitely a very prominent by-product, but other things can happen too.

I can’t emphasize enough—and, Andrew, you’ve heard me talk about this before, and I think some of your viewers have too—about the importance because I started on the community level. I wasn’t as smart as James when I was originally diagnosed. I was so anxious to get started with something, and I was so far along with the CLL by the time it was diagnosed—stage IV—and I will say that stage IV in CLL, thank goodness, is not the same as stage IV in some of the other cancers.

But, stage IV—I just said, “All right, whatever you got. Let’s get started.” And, I was four cycles in of this older regimen before I got to MD Anderson, before I found that name and got to MD Anderson, and of course, I was already four cycles in and was told, “You’re doing really well. We don’t see anything. Finish up with what you’re doing.” But, when I relapsed, the first place I went was back to MD Anderson, and that was how I found out about the pathology with the 17p, that it was only 4 percent of the cells as opposed to full-blown, and that I could do the FCR, which, at the time, was the gold standard of treatment.

So, I can’t emphasize enough the importance of that, and I think the key takeaway is James did it the right way. He took a breath and he found out what he needed to know. Of course, James, you were on watch and wait for several years, so that helped, but I had to get—I would have had to get treatment under any circumstance. But, people—it’s hard to do, it’s very emotional. Andrew, I’ve heard you say we all try to become medical experts, drinking from a firehose.

If you can just take a breath, take a couple of days, figure out who that specialist is, and even if it’s just to get one consult, even if you feel “I live to far, I can’t do the transportation, it’s a hardship for me, I can’t take off work”—even just to get the one CLL specialist consult, because the specialists very much—and, Dr. Jain, I think you would verify this—want to work with the community oncologists. Dr. Jain, you can’t possibly see every CLL patient in the United States. You would never go home, correct?

Dr. Jain:           

That’s correct.

Carol Preston:

And, I was told that the vast majority of patients come for consult, and that the specialists are very willing—and, that’s what happened in my case—to work with the community oncologists.

Andrew Schorr:           

Right. And, there are two ways that can be done. Dr. Jain, just confirm this for us. So, again, we’re talking about people who have relapsed; their remission has ended. They may come see you or go to a major center like yours at MD Anderson, or UC San Diego, where Dr. Kipps sees James, and several other major centers around the world, actually.

But, it also may be that their community doctor calls you—and, I’m sure you get calls like this all the time—and says, “I have Carol Preston out here in Maryland. Here are test results.” You may say, “Fax me that”—I don’t know about faxing anymore—“Send me that.” Maybe you’d wanna examine Carol yourself, but the point is you as a CLL subspecialist could be an architect of a retreatment plan, correct?

Dr. Jain:           

Yeah, that’s absolutely correct. So, a lot of patients—we see several, as Carol mentioned—are coming for a consultation. A lot of patients I see here are newly diagnosed CLL, and obviously, it’s a scary diagnosis, and the local doctor appropriately will tell the patient they need to be watch and wait, as was the case with James’s situation. Again, it’s a bit counterintuitive. You have a leukemia on one hand, and the doctor is saying to you, “Hey, we don’t need treatment.”

I can tell you that the single most common reason I see patients here is as a new patient where they’re coming for a second opinion, but I think the second opinion—and, I will probably tell the same thing to the patient, “What your doctor said is correct.” But, I think it certainly gives a peace of mind. And then, we discuss with them what the feel of CLL is, how it’s moving, because they also wanna know what will happen maybe five years down the line. “If I need treatment five years down the line, what are the treatments I’m looking at?”

So, we can give that comfort, provide that feedback, and maybe build on the knowledge the local doctor may have provided to them. So, that certainly is true. The other aspect is patients who really need treatment—patients who have relapsed CLL, or patients who are first-line CLL, as was the case with Carol. On day one, it’s like, “You need treatment.” I think in that situation, certainly, if the patients were to come to us, we would treat them here, but I really very much encourage the viewers and the listeners here that me and my colleagues here are always available.

Even if you cannot come here physically from logistics, financial, whatever reason that might have been, you can have your doctor call us, or you can just send me or my colleagues an email, and our email address is publicly available on the website of MD Anderson, and we all do our best to reply to your email right away or within 24 hours with what we may think is the appropriate strategy, maybe.

So, at least, we are not far, and I think we are always available, and I just said we are available by email, which is obviously easier for some patients, or if you wanna come here, come to MD Anderson, UCSD, or other major med centers in the U.S., I think all of the CLL docs are very willing to work with your local doctor for ongoing care.

Andrew Schorr:           

My turn, since I’m living with CLL as well. First of all, I agree with what everybody said. So, here I am after 17 years, in conversation with the same doctor that James has, Dr. Tom Kipps at UC San Diego. We could see my white count go along and then shhh—like that. And, he said, “What are you doing the next few months?” And, that’s when he recommended a treatment for me.

I have another cancer as well. Somebody—myelofibrosis, scarring of the bone marrow. Again, it’s a little bit more complicated. What medicine won’t aggravate the myelofibrosis? And, you might have diabetes, you might have atrial fibrillation, you might have something else going on that needs to be taken into consideration for recommendation of treatment. Okay. So, that was a year and a half ago. It worked out well. I’m running too, James, so I’m happy to do that, and I’m leading an active life and devoted to this.

But, my white blood count is not perfect, and I have monthly tests, and I can see a little—so, Dr. Kipps and I are still looking to see if it’s gonna go like that again, and I have that uncertainty, and I deal with the same emotional issues that you and Carol do. I know it’s there, I go on with my life, just keep on trucking, we have a new granddaughter, go celebrate that. Fortunately, I’m working, Carol, so I can really do that.

But, my point is none of us know when something’s gonna happen like this, but I wanna say we have very devoted subspecialists like Dr. Jain—this is what he does, CLL—at major research centers that are widely available to us in the medical community. We have to be very grateful for that. The other thing I wanna underscore for our views is—and, Dr. Jain ticked it off—ibrutinib. venetoclax. Others coming—duvelisib—and others in trials, others emerging. Obinutuzumab. And, there was ofatumumab—all the “mabs”—and somewhere out there, who know? If they ever perfect and make it safer, CAR T-cell therapy or CAR-NK therapy, whatever. So, we’re very fortunate that there’s stuff to talk about.

So, a lot of what I do when I see Dr. Kipps, not needing treatment right now, is should I need treatment—it’s like a science class. “What do you got going should I need it?” And, his thinking changes over time because there’s new stuff in the lab, there are new studies, there are new trial patients like James. How are they doing? Will I be a follower of what James was a pioneer for? So, I’m pretty encouraged.

So, I wanna just go around before we end. Even with remissions that end, are you hopeful and feeling okay—nobody wants to live with CLL, but we are living with CLL. So, are you okay with that and hopeful in what you’d say to other patients? James, let’s start with you. It doesn’t sound like you’re troubled where other people should be terribly troubled with this.

James Miller:   

I can’t do anything about the disease except to be positive and to show up for appointments. That’s my job. Never miss an appointment. And, compartmentalization is not a bad concept. Just park it over here until it’s right in your face in the sense that you have to go to an appointment, or go down for an infusion, or do the six-week step-up process on Venclexta. You just do that in order to get back to where you wanna be. So, the best way to do it, in my mind, is stay positive and push it to the side, but always pay attention to it when you need to.

Andrew Schorr:           

Carol, what about you? What would you say to people, knowing that we’re off—we’d like to be like those young people and effectively functionally cured. As Dr. Jain said, I thought maybe I was, but I wasn’t. So what? What would you say?

Carol Preston:

What he said. No—truly, what James said, but also, it sounds cliché—more than compartmentalizing, living one’s life. Andrew, you know that after I was—I think after I relapsed, I ended up traveling overseas. I visited 12 or 15 countries, doing something for work, for pleasure. So, I never let the CLL get in my way. When I—beyond the relapse, when the second cancer kicked in, I thought about not returning to work because of the radiation schedule, which is an everyday thing for six weeks. 

And then, I said no—and, this really piggybacks onto what James said—“No, I’m going to return to work. I’m gonna show that I can do it, and then I’ll make a decision.” So, the takeaway from that is beyond living your life, decide what you wanna do, when you wanna do it, you dictate the terms of how you’re living your life, and to the best that we all can, depending on what stage we’re at, not let the disease drive you. You drive, not the disease.

James Miller:     

Can I add one little thing to that that will kind of paint that picture even more starkly, if you will? In 2005, when I went into FCR infusions, I was supposed to have six months of them, and I had three. But, I was an active, practicing attorney at that time with a major law firm in downtown L.A. I did not tell the law firm anything. I would go down for my infusions and do all my work on the phone. If I had court appearances, I would make sure that they were scheduled on days where I didn’t have the infusions.

So, in other words, I worked around the situation to lead a normal—continue to lead a normal life, and I think that was very important for me. In fact, I don’t tell anybody at the law firm—that’s kind of obvious. Law firms are not the kindest, gentlest people in the world. But, it all worked out, and I had those infusions in 2011, and I didn’t retire until 2014. I did that after 40 years of practice. It didn’t affect my life.

Andrew Schorr:           

Now, you’re running and playing golf. Quick story for me—so, I am in active treatment as far as getting immunoglobulin to help my immune system monthly because CLL has kind of nicked it. And so, Esther and I planned a trip to New Zealand and Australia with a month bookended by the immunoglobulin that my doctor thought I really needed, being on planes and all the places I was gonna be. And, it worked out great. So, I said, “This is where I wanna take my vacation, and let’s adjust the treatment schedule around that.” And, it worked out fine, and we continue to do that.

So, I wanna end with Dr. Jain. So, Dr. Jain, you’re at a major research center. So, you’ve mentioned approved therapies, and even newly approved therapies, but you also know what’s in the pipeline. Even though not yet approved, you know what appears promising, could—or, theoretically even promising. For those of us who will hopefully lead long lives but not be cured of CLL, do you feel hopeful for us that if we have a second remission that ends, or even a third, it might be tricky—there’s stuff to talk about?

Dr. Jain:           

Yeah. I think there are many new therapies in development. We have new agents, new versions of ibrutinib, our second generation of these BTK inhibitors. We have MCL-1 inhibitors in Phase I clinical trials. CAR T, you mentioned—already, many centers are doing CAR T for patients with CLL, and we didn’t talk about it, but I think stem cell transplant certainly is an option for a selected group of individuals who have relapsed CLL. That’s an option—has been an option for a while, but less used these days.

And, there are other things in development. There’s a new PI3-kinase inhibitor in development. And, there are other very early on preclinical concepts with new molecules, again, looking promising in the lab. So, there are lots more things happening in the field of CLL. We are already much advanced of where we were five years ago, but I think there’s many newer things coming. So, I think we’re in a really good setup, and I think if—and, hopefully not – I think for patients who have had subsequent relapses of the disease, I think we will have more options available for them.

Andrew Schorr:           

Okay. Again, to underscore something you said earlier, we already do. We have some very good options now for relapsed CLL, and if those remissions end, you can swap approved therapies, and then, there are others that may be available in trials. James, I wanna thank you for you being a trial patient to pave the way for the rest of us in what led to approval of options that are available to us, and I also wanna thank other people—I was in the FCR trial, and I’m grateful that I could help.

And, Carol, I wanna thank you for your words of inspiration, and I hope you continue—now, you’re fully retired, you moved to a new place, other kinds of chaos—you’ve got boxes. All the best to you, and for each of you with your grandchildren. And, Dr. Nitin Jain from MD Anderson, you’re in one of the world’s largest leukemia departments, and I wanna thank you for the work that goes on there and your peers around the world who are there for us. And, the fact that you talked about taking phone calls, taking emails, and responding quickly—thanks for that, because I know sometimes, there may seem there’s not enough hours in the day, but thanks for doing it. 

Dr. Jain:           

Sure, thank you.

Carol Preston:

Thank you, Andrew.

James Miller:   

Thank you, Andrew, and thank you, Dr. Jain.

Andrew Schorr:           

Okay. Carol in Maryland, James in California, Dr. Jain at MD Anderson in Houston, Andrew in Portland, Oregon today. And really, if CLL comes back for you or has come back before, I still think it’s a very hopeful time. It doesn’t work for everybody, but for so many of us, it does, and we have to be grateful. Andrew Schorr signing off, and as I like to say, remember, knowledge can be the best medicine of all. And now, Ruthie will tell us how we did.

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.

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Page last updated on June 10, 2019