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Advice From CLL Patients and Care Partners

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Published on April 17, 2020

Key Takeaways

A panel of chronic lymphocytic leukemia (CLL) experts, patients, and care partners utilize their expertise to answer questions and offer advice. These questions touch upon topics including staying healthy during the coronavirus pandemic, navigating a CLL diagnosis, the efficacy of frontline treatment options and more. 

This program features Dr. Sydney Hester, Dr. Ian Flinn, Nurse Practitioner Camille Ballance, John and Shari Howerton, and Nate Ferguson. Watch now to learn as Andrew and Esther Schorr, Co-Founders of Patient Power, interview these CLL experts, patients and care partners.

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 Tennessee Oncology, Bag It, and CLL Society. Patient Power is solely responsible for program content.    

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Transcript | Advice From CLL Patients and Care Partners

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.

Esther Schorr:
Hi there, this is Esther Schorr. On March 28th, Andrew and I co-hosted a virtual town meeting. Part of that meeting was a very exciting question-and-answer session where our experts answered questions from our virtual online audience. Let's take a listen and hear what the experts had to say.

Dr. Hester:
We don't know the current COVID-19 status. Is this going to be something that will be normal, a seasonal appearance? We just don't know yet. There is work going on to make a vaccine, however, to evaluate not only the efficacy of the vaccine, but also the safety of it, that takes several months for that to occur. There are clinical trials that are ongoing in Wuhan, in China and probably other places throughout the world as they're starting to have patients recover from COVID-19 to institute some of these trials of vaccines.

So there's obviously this fast-paced track as possible to get a vaccine. However, there has to be a process that includes evaluation of safety as well as efficacy before that's released to the public. So that's not going to be a solution in the next couple of months to deal with this pandemic.

Andrew Schorr:
Okay. And, John and Shari, you're in a little place, you're in a little town, but it's not New York City where we're hearing terrible things from right now, but yet you are being really careful right there. Aren't you, John?

John Howerton:
Yes, very much so. And our governor, Jim Justice, he was very proactive in setting boundaries and stay at home, so that helped. And, of course, you're right, we're in a small place. As a matter of fact, we're in a small—not geographically speaking, but population wise, there are only about 1,800,000 people in the whole state of West Virginia, so pretty spread out. But it's starting to catch up with us as well around here as far as cases, because we are probably, honestly, one of the last states to do a lot of testing. So now as the testing is starting to ramp up, so are the cases. But like we said before, we're pretty much hibernating, so we're isolating.

Shari Howerton:
We're both taking care of our health, we're both exercising daily. We have friends, they're also co-workers at the dealership who are checking on us. They're treating us as though we were their parents and insisting that they go to the grocery store for us, and then they drop everything in our garage, and I go out with gloves and disinfectant and wipe down everything that they buy for me before I bring it into the house.

Esther Schorr:
We did get a question. I think this is probably good for Dr. Hester and Dr. Flinn. There are couples, and actually it hits close to home, because our son and our daughter-in-law have this situation, but also I think this is a question that Shari put in for a friend. If you have a couple, one is a healthcare provider who is essentially, they're on the front lines or is in the hospital in one way or another now, what do they need to do in this situation in their home life? You've got one person who is probably in a situation of higher exposure potential coming home at night. What's the advice about social distancing for them? I mean, should that partner live in the basement, take a shower when they come home? What do they do?

Dr. Hester:
That's hard. That's the situation I'm living in. I have a young daughter, and my husband's also a physician. There's not any official guidance on how someone should do that at home, certainly if someone has been exposed, has a known exposure with someone with COVID-19, or has symptoms, there's guidance on that. That's when you want to institute more of a quarantine-type situation or wearing a mask and trying to have as much distance from folks even in the home as possible. As far as someone who's on the front lines, you're really using your own discretion. And I think that plays into where their family member is or care partner is and their illness. Where are they in their treatment? How immunosuppressed are they?

It's a hard question to answer, and I don't think there's a blanket statement, but there's also a balance of, right now we're facing shortages of personal protective equipment, which is something as simple as a mask for frontline workers. And so these really hard decisions are now creating a lot of tension and difficult answers and something that would have been easy to say, "We'll just wear a mask." Like, okay, I go on my normal medical supply website, and I can't get masks. So we just have to maintain social distancing where appropriate, make sure your hand hygiene is spot-on and recognize any symptoms that you may develop where you do need to ratchet up that level of, I'll call it isolation or quarantine from one another.

Andrew Schorr:
Okay, that's well said. I wanted to go onto some other areas, and we can skip around a little. Remember hit the Q&A button if you have a question, Esther, and our producers will see it. But I got a bunch, because you guys are tuning in. And this is for Camille probably. Camille, we talked about all these pills. So here's a fellow who says, "I'm doing well on ibrutinib (Imbruvica), but it's difficult for me to swallow pills. Is it okay to open the capsules and put the ingredients in apple sauce and eat it with apple sauce?" I don't know if you know.

Camille Ballance:
No, it's not. The one thing about the oral drugs that, the oral cancer drugs is most of them cannot be chewed or crushed, because they become more toxic. So, he will start having side effects, so sorry.

Esther Schorr:
Yikes.

Andrew Schorr:
Okay. And I think, Ian, you spoke about this one, Dr. Flinn. Leah wanted to know about Imbruvica or ibrutinib dosing. She says she's been hearing about people lowering dosing, but just to reaffirm, you're very careful about changing the dose, right?

Dr. Flinn:
Yeah, that's right. I mean, I think there are important questions about whether someone with perhaps low-risk disease or someone who's been on therapy for a while, after an induction period, could we reduce the dose? But those are unanswered questions, and we know that people do really, really well if they stay on what we consider to be full therapeutic doses. And so I don't lower them in patients unless they have some sort of side effect and they can't tolerate it, then I think obviously then you can try to lower it. But absent to that, I would stay in full doses.

Andrew Schorr:
Okay. Camille, here's a question, then Esther will go to you here. Debra had a question about B cells. She had FCR, and she's been in remission for two years. And actually, she got to MRD-negative status, but she hasn't really seen the B cells come back up. How long does it take to recover? When does she normalize? Camille, what do you tell people?

Camille Ballance:
I don't know if there's really a timeline. I mean, I wonder if some of our patients ever recover, honestly. To be honest, I don't know how long it's going to take for her B cells to recover, but that's a reason why we monitor for infection. We'll check the immunoglobulins if they're having lots of infections and get them IVIG if it's necessary. But, I don't know. Ian, do you know how long?

Dr. Flinn:
No, I don't think that's surprising what we're hearing here, that it's taken a couple of years. I mean, Andrew, I think you even said when you got FCR, you had sinus infections for a few years.

Andrew Schorr:
Mm-hmm, quite a while.

Dr. Flinn:
I mean, I think that's one of the reasons that we're trying to get away. I'm worried about FCR these days because of the long-term immunological consequences. We know from CD4 counts, which are T cells which are another very important part of the immune system that that can definitely last years before that comes up. So I think the answer is, it's going to be very different from each person, but hang in there. It's likely it will improve in time with therapy, and ultimately it will come up.

Esther Schorr:
Thank you. I got a couple of other interesting questions, but one is that we know that there is a big global push now to find a vaccine for COVID-19. So we don't have that yet, but we're being asked, can you talk a little bit more about vaccines and how do CLL patients—is there a general—do vaccines like for the flu or the general flu, should they be getting them? Do they tend to work well?

Dr. Hester:
That is a great question. I'm so glad of the audience member who brought that up. So, the one way that I think patients can have a lot of, besides knowledge and doing a lot of the reading like Shari was talking about, is going to your doctor and making sure that you're getting the vaccines that you're ready for. So the timing of getting vaccines is very important in patients with CLL. For example, you don't want to get your vaccines in the midst of your chemotherapy treatment, not necessarily because it's not safe or you're going to have a reaction to it, but more that it's not going to be as efficacious than if you wait until after a period of that chemotherapy where your immune system is back up again where you can develop an appropriate immune response to that vaccine.

In regards to the vaccines that we recommend, one is definitely the influenza vaccine, and that should be given on an annual basis. There are two different flu vaccines. One is a high dose based on if you're 65 and older, and the other one is a standard dose vaccine. The second one, we touched on it earlier with Andrew, is a pneumonia vaccine. And there are two different pneumonia vaccines, and the scheduling of that is a little bit complex, and so you just want to make sure you're keyed in with your doctor to find out which vaccine you're ready for and how often and when you ought to be revaccinated. The third vaccine is just a routine Tdap (Adacel or Boostrix) or tetanus, diphtheria and pertussis vaccine or a tetanus booster. So those are your routine vaccines that everyone ought to get at the right time.

And then there's a lot of question now about a new vaccine for shingles, which is the chicken pox virus coming back again. So as people might remember, there was an older shingles vaccine probably about 10 years ago, and that vaccine was not felt to be very safe in patients who are immunocompromised, and so that was not a vaccine that was offered to patients who had CLL. There is now a new vaccine called zoster vaccine (Shingrix), and it's made differently. It's not a live attenuated vaccine. It doesn't have any live virus particles in it. And it's a very, very effective vaccine for the general population who are not immunocompromised. And so that's been approved by the FDA and used if you're 50 and older.

However, there is not an approval yet or recommendation through the CDC or our immunization body that would recommend that yet for patients who are immunocompromised, and the reason why is they have ongoing studies to determine the efficacy of the vaccine. We don't anticipate any safety issues per se. It's a very safe and very effective vaccine in our healthy patients, but those studies are ongoing, so there'll be more to come on that so please stay tuned.

Esther Schorr:
That's great. Thank you for that overview. You know, it's almost like keeping track of when you have young kids, and they're getting 15 vaccinations before they're a year old. This is like you really need to know what the timing is.

Andrew Schorr:
We have people who are newly diagnosed and family members trying to absorb this. And, Shari, I know you've been all over it. And, Shari, you've probably seen this, and Nate as well. You can drive yourself crazy hearing a little bit about this, a little bit about that. And then Azerbaijan, they did a study about whatever in mice you know, and you and you say, "Oh man, what about that? What about that?" What we've been talking about here is the stuff that leading CLL experts, Dr. Flinn talked to other doctors worldwide have been studying, have faith in, they want the best for you. So you can drive yourself crazy. I mean, Shari, I don't know if you want to comment, because this can be crazy-making, right?

Shari Howerton:
You know, I was going to add a comment, but I didn't want to interject. I would say, here's what my journey has looked like. In the beginning, I completely immersed myself. There came a point when John was doing well, and things were on cruise control. It's like there are times you're like just struggling to stay on the road, because it's emotional, and maybe you're hitting some bumps, but then there are other times you're on cruise control.

My advice would be, always be informed, do some reading, talk to other patients. But when you're on cruise control, enjoy cruise control. At this point, what's he's doing is working well. I read a little bit, but I am not immersed in it today like I was in the beginning, because I don't need to be. And I don't want to give up having a normal life and just enjoying being on our life journey to be completely overwhelmed with information on CLL. But maybe I won't even need every single bit of that information. So you have to do it in some moderation.

Andrew Schorr:
Well said. Let me ask this one instead of the bottom line question, Dr. Flinn. Jenny is just in her 40s. Nate, you were diagnosed in your 40s, still in your 40s, I was diagnosed in my 40s. So she's saying, "With the newer treatments, could someone in their 40s live a normal life span with this disease?" What are you thinking, Dr. Flinn?

Dr. Flinn:
I think definitely. I mean it comes down to some of the specifics, but when patients come in and say, "I read online that this is the—I'm going to live X number of years," I tell them, "You’ve got to ignore all that, because the textbooks haven't been rewritten based on all the new therapies that we have out, and we really don't know." There was always a group of patients that have that had a normal life expectancy even before these new therapies, people with more of a smoldering CLL, the good risk group.

But I think the number of patients that are going to fall into that is getting larger and larger, because there are newer therapies. And it is more daunting as Nathan was pointing out, in someone who's 40, then the goals are much longer than in someone who's 70, right? I mean, you don't have to kick the ball that far down the field. But I think that that should definitely be our goal.

Andrew Schorr:
So this relates specifically to venetoclax (Venclexta), Camille. So Elliot writes, and he says, "What do the studies show for efficacy when reducing the dose of venetoclax to 200 milligrams or even 100?" Because he's dealing with dehydration and he wonders—well, and he lives—I know Elliot, he lives in Arizona, so he's on venetoclax, but he is thirsty, dehydrated. So is there a dose reduction, or do you just drink a lot of water?

Camille Ballance:
I would just drink a lot of water. Yeah, I mean it depends on, is his blood pressure low? I mean there are ways to manage the dehydration. We've never reduced for dehydration.

Andrew Schorr:
Okay. But when you were talking about the ramp-up with venetoclax, so and part of that is drinking a lot of water, right?

Camille Ballance:
It's a huge part. I mean, we want people to float away basically. Plus…

Andrew Schorr:
…right. And that's to deal with what Dr. Flinn mentioned where the earlier concerns had been about tumor lysis syndrome. Super powerful drug killing the CLL cells, you've got to be washing things away, right?

Camille Ballance:
We’ve got to protect the kidneys, that's the main thing. We're trying to protect the kidneys, so we give IV fluids to most of our patients on top of everything they're drinking. And obviously, we take all of these into account with the rest of their overall health as well. But yeah, I mean you should always be drinking enough water, but you should double it if you're on venetoclax, especially in the beginning. I mean these drugs in general can be very dehydrating, I mean across the board.

Andrew Schorr:
Okay, all right.

Dr. Flinn:
I don't think there are specific studies that I'm aware of comparing the long-term efficacy of someone being on 400 milligrams versus 200 milligrams. But we do know from population of clinical trials, there are some people that do have to reduce. And I'm not aware if the dose necessarily does work on patients if you follow the dose modification scheme that's in the trial, that those people do worse than those patients who are treated at 400 milligrams. And that may be because the effective dose, maybe you have, maybe the patient metabolizes things differently then, and that's why for them the right dose is 200. So again, I think like ibrutinib, I would try to keep people at the low dose if they can't tolerate it because of their neutrophils, and of course you have to dose reduce.

Esther Schorr:
But you know, Andrew, I think earlier mentioned trisometry?

Andrew Schorr:
Trisomy.

Esther Schorr:
Trisomy. What we need to know about that?

Dr. Flinn:
I think you're maybe talking about trisomy 12.

Esther Schorr:
Yeah, that must be it.

Dr. Flinn:
An extra chromosome 12, right? It's a very common abnormality in patients with CLL. And of all the prognostic, if you look at outcomes for those patients, again, with the newer drugs, I don't think it makes any difference. But with the older series, it wasn't a very powerful—It was maybe outcomes were a little worse than the average patient, but they weren't dramatically different with that aberration.

Andrew Schorr:
And Lynn wanted to know with the novel agents, so we talked about all these newer pills in particular and some monoclonal antibodies as well. Are any of the novel agent treatments resulting in a long-term remission of CLL? So, Dr. Flinn, what do we know now?

Dr. Flinn:
Absolutely. I mean, I think that the results with the frontline use of ibrutinib, also with acalabrutinib (Calquence), with venetoclax and obinutuzumab (Gazyva) that the remissions are quite long. You'd need to define what you mean by that, but we're still following many, many patients in these trials, and many of them are still without progression, sometimes after five, six, seven, eight years of being in these studies. There's a group of patients that haven't progressed, and so long-term remissions without progression are absolutely achievable with the current regimens.

Andrew Schorr:
Esther.

Esther Schorr:
One of the viewers asked, "Is there a connection between CLL, shingles and MRSA?"

Dr. Hester:
I know as far as CLL, you might be more at risk of having various viral infections in the herpes family, which includes HSV, which is what gives you oral, what you might call common cold sore, and then the chicken pox virus is the varicella. But definitely not MRSA. You have, the defects in the immune system can make you predisposed to [inaudible] like I mentioned earlier in the category of bacteria, but not a connection between those that I'm aware of that might make someone more predisposed to getting CLL. When you get CLL, yes, you may be more predisposed to acquiring those infections through either the immune system defects themselves or the treatments that you may be on. So that's how I'd probably answer that.

Esther Schorr:
But it's not a through-line that one is a precursor to the other or the other. It's a whole picture.

Dr. Hester:
That's correct, Esther. Unless Dr. Flinn has anything to add to that.

Dr. Flinn:
No, only that certainly CLL patients have a higher incidence of shingles than—and we, unfortunately Camille and I have seen some really terrible cases of shingles. So it's something—and that's both on and off therapy. I mean people can get patients who can get shingles with CLL and just because of the immunosuppression that's associated with that. I don't think there's—I mean I'm sure there's a causal relationship with reactivation of the virus in patients who have CLL, but I don't think that's why they got CLL, if that was the question.

Andrew Schorr:
I was just going to mention in my own case. So I do get the IVIG every month, and my doctor will review that. But I have been taking acyclovir (Sitavig or Zovirax), I think it's 50 milligrams, doctor, a little pink pill. I've been taking it for years now, morning and night, because I know that maybe it could be preventative for shingles, and I don't want to go there. Anybody that’s had shingles, you don't want to go there. And I think you were just alluding to that, Dr. Flinn. So I take that sometimes after treatment, I know after I had obinutuzumab, I think it was during, I took sulfamethoxazole and trimethoprim (Bactrim), an antibiotic, for a while as well. So there are certain times when I'd been on antibiotic therapy as well as the acyclovir, right, Dr. Hester?

Dr. Hester:
Yes. Actually I'm glad you brought that up, Andrew, because the Bactrim is interesting. It's an antibacterial, but we actually use it to treat a unique type of pneumonia that is really in some of our more immunocompromised patients. Dr. Flinn alluded to having sometimes your CD4 cells can get very low and when that happens, we can see people get a certain type of pneumonia from a certain bacteria called pneumocystis, and that is why some patients are asked to be on Bactrim for that period of time. It's to help with that infection. We use it in HIV patients, and it's very successful.

Andrew Schorr:
Yeah, no, I'm glad. I want all the protection I can get. Here's a question that came in. Let me see if I got it right, about treatments to reach MRD-negative status. And if you get MRD, do you have a better outcome? And is MRD achievable even if you have unmutated disease? So there's a lot to unpack there, Dr. Flinn. But about getting the MRD, what does that mean longer term? And does it matter whether you're mutated or unmutated?

Dr. Flinn:
So I think patients who achieve MRD negativity have a longer progression-free survival. I mean their CLL stays away longer than patients who don't. I mean, the best example of this is probably from one of the German CLL study group trials, CLL14, and we know that very clearly that those patients on that trial, regardless of how you got there, whether what arm of the trial you were on, that those patients, that they stayed in remission longer than those patients who did not achieve MRD. The chances of becoming MRD-negative were much higher in patients who were on the venetoclax, received venetoclax and obinutuzumab than were the control arm of the trial. But that's all under the assumption that you're stopping therapy, right? So for patients who are receiving BTK inhibitors where you traditionally do not stop treatment, then MRD is not a relevant goal.

We know that the fact that most people were not going to get into MRD-negative if they're on single-agent Imbruvica, single-agent Calquence to that. Now, there are a whole bunch of new trials, therapies. Nathan's on one of these trials looking at alternative combinations than venetoclax and obinutuzumab. There are trials looking at venetoclax and ibrutinib, there are trials with venetoclax and acalabrutinib, the other name for Calquence, and then three drug combinations.

And honestly, we don't know right now which is the best regimen to do that. And so the only one that's FDA-approved so that your doctor can write a prescription for without any problems with the insurers is the venetoclax and obinutuzumab, Gazyva, combination. I'm sure other ones will get approved as time goes on and allow for greater freedom in that.

Andrew Schorr:
Right. And, doctor, mutated stuff, Nate just sent me a note, and Nate is MRD-negative and unmutated, so I think that helps answer the question as well about mutational stuff. I just wanted to chime in one thing about cost. So first of all, we will be doing more on Patient Power maybe in the CLL Society talks, but there are assistance programs, there are people at clinics like Tennessee Oncology that help you financial navigators related to what will your insurance cover. Dr. Flinn was just mentioning that. Are there assistance programs if you're on Medicare? Obviously, these drugs are costly.

In a clinical trial, typically the drugs are made available to you in the trial. I believe, Camille, I think I have it right, at no cost. There may be costs for other treatment-related things but not that. So those are things to talk about at the clinic level. But certainly there are programs now to support you, so you can get both tomorrow's medicine today and today's medicine and have access to it, and like John and Nate, remember to take it. Okay, Esther, did you have another question before we wrap up?

Esther Schorr:
Yeah, I have at least one more. Apparently, there are a lot of questions about hypertension and Imbruvica. A number of people asked about how that gets managed, because it seems to be something that's coming up regularly.

Andrew Schorr:
Camille maybe could help with that.

Camille Ballance:
So that is a concern for sure, when we put someone on Imbruvica, especially if they have hypertension from the get-go. So everything has to obviously has to be monitored if the patient's having issues. Sometimes they'll have the monitor at home, sometimes we'll start somebody on a hypertension medication, or sometimes we'll just have them follow up with their PCP if they're already monitoring or managing their hypertension. And then if it's getting to the point where it's not very well controlled, we can switch them.

Like Dr. Flinn said earlier, we're waiting on head-to-head data between acalabrutinib and ibrutinib, but there seems to be less hypertension. It does seem to be a little bit cleaner. And from the patients that we've switched, they seem to just tolerate the drug better overall. But that's also, if you have a patient that's doing really well on a BTK, that's an option as well if their hypertension is out of control.

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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