Navigating Through CLL Treatment

Transcript: Nicole Lamanna, M.D.: Danise is on monitoring because she’s in complete remission. But let’s say down the road her disease acts up again. We hope that some of these newer medicines might potentially be curative. As I said, I’d like to think of this as a chronic disease, but the goal is to make this a curative disease. And there are, no doubt, patients who are in long-term remission. In other words, they have no recurrence of their disease, and we’re hoping those individuals are truly cured. But we’ll need many years of follow up.

But for folks who might have had treatment, what other options are there for the future? As a CLL [chronic lymphocytic leukemia] physician, I am often thinking ahead. I need to think not only about what somebody’s getting currently, but what potential options are available down the road. So even though the patient might be focused on the treatment they’re actively getting, and the prevention of any side effects and issues, I’m also thinking about the future treatments down the line.

That’s a strategy that many of us will think about with our folks way in advance, because partly what they might get later might be dependent upon what they’ve already gotten. So the history of a patient’s treatments is important. The side effects that they might have with other forms of therapy are also important. As we all get older, we acquire more medical problems. There might be other issues, more organ issues, and things that we have to take into account. And then there’s the disease itself. Are there changes in the CLL cells that may decide that one therapy might be better than another?

The question about subsequent lines of therapy is a little bit more complicated because it really is dependent upon the patient, their disease characteristics, and their medical issues. And we have to take all of that into account when we consider future options.

The longer somebody goes between therapies—let’s say you’re not on a chronic oral therapy but are now being monitored again…. Danise will have the option, if she should need treatment again in the future, to be retreated with venetoclax. But there are other options for therapy too. There are lots of treatment options available to patients if they relapse and need treatment again, whether that be on a clinical trial or not. Again, part of that discussion is dependent upon those factors I just discussed. Your physician will help guide you with your future treatment, depending upon what your organ function is and where your disease is at this time. Has it changed? Is it more resistant? And what treatments you’ve had and what types of side effects you might have had to those therapies before. The likelihood is, if you had a terrible side effect to a drug, we’re not going to be using that drug again.

So there are lots of options for patients, but it is a little bit more of a complicated discussion because there isn’t a roadmap. It isn’t, “You do this, then you do this, then you do this.” The doctor needs to consider all of these factors because you’re an individual. And until there’s a one-size-fits-all approach, which there currently is not, there are many options for patients with CLL. And so, that’s the good news. But it is a little bit more complicated, I’m not going to lie. There are a lot of factors that have to go into that consideration.

There are lots of new drugs that we’re evaluating all the time. We’re looking for new therapies to get us to the next level. The goal is, if you do need treatment, to hopefully make it as seamless as possible with as few side effects as possible and to get a good response. But then also we’re thinking longevity. How do we go from one to another, to another, to another, to another so that you can go on living your life? Danise, how has it been for you? We’re monitoring you now, but based on your history that you’ve lived in all these years with CLL, what do you think?

Danise Hoover: Well, I feel fine. That’s the biggest take-away. I feel fine. Of course, the best outcome would be that I would be monitored forever and never need anything again. But I have faith in medical science. I have faith in the doctors. There’ll be something at the other end if I need it. I’m convinced of that.

Nicole Lamanna, M.D.: And your lifestyle now? What have you been doing over the past couple of years?

Danise Hoover: My job was flexible, so the treatment didn’t cause me a lot of difficulty with my work. But I retired in September, so it’s all good. I could do whatever I want.

Nicole Lamanna, M.D.: So you did treatment while you were working?

Danise Hoover: Yes.

Nicole Lamanna, M.D.: I think that’s an important point for patients to hear.

Danise Hoover: Yes.

Nicole Lamanna, M.D.: You retired after?

Danise Hoover: Yes, I retired after. I did the treatment while I was still working. I had a generous sick leave package and flexible colleagues and a flexible work schedule. It all was manageable. I had reasonably good health insurance. Not having good health insurance can be an issue for people with chronic diseases like this. That’s something that needs to be considered. It was never a problem for me.

Nicole Lamanna, M.D.: That’s a discussion that comes up a lot with patients with CLL. Particularly with some of these new chronic oral therapies, cost is an issue. Maybe you’re going to take a drug for the rest of your life. If you’re on medicine for high blood pressure or diabetes, you’re taking medicine every day. Hopefully they’re not very expensive. But remember, these are oncology specialty drugs. And so, they’re dispensed through fancy specialty pharmacies. You don’t usually get these in your local pharmacy. And these drugs are very expensive.

We usually try to make sure that the patient is covered for these drugs, or that their co-pay for the drug is very low. And again, there is lots of assistance, thankfully, through the Leukemia & Lymphoma Society, and believe it or not, from industry, in trying to get grants for patients where cost can be an issue with some of these chronic therapies.

We recognize that potentially can be a problem for patients. And again, you’ve got to work with your provider team to help you get through that. If something is cost prohibitive, then we have to think of an alternative for our patients. We recognize that definitely is an issue. It comes up a lot and is a concern for patients with all types of chronic diseases, whether they have CLL or another chronic medical problem. So that’s very important.

And work can be an issue. Danise was working and had a flexible job, so she was able to manage all of this. But we recognize that can be a consideration for what type of treatment somebody may get. Treatment may depend upon what their responsibilities are for work or family or other factors. Those considerations need to be brought up whether you’re on a clinical trial or not.

So, I want to thank everybody for listening; but I also want to thank Danise for doing this for patients and for being here, and for participating also in a clinical trial, which I think is amazing. We understand the work that she put in. But again, this is a drug that is now FDA approved and she has had a phenomenal response. Pushing the field forward and trying to find a cure for patients with CLL is what we’re trying to do. So anybody who participates in any of the clinical trials — from a researcher’s standpoint, from the physicians and staff and nurses — we can’t thank you enough for doing that as we try to do better for you.

Danise, do you have any take-home points or advice you want to share with everybody?

Danise Hoover: I think it’s really important that people maintain a positive attitude. There is so much coming up through the pipeline. There are so many skilled researchers and physicians working toward an end of this disease. You just have to be positive about it. You can’t let it take over your whole life.

Nicole Lamanna, M.D.: I don’t think I can say anything better than what she just said. Kudos. Honestly, that’s the best I can hope for. But thank you all. We’re hoping to do better for you all, to make side effects less complicated and difficult, and obviously to find a cure for patients with CLL. Again, there’s a lot of support. There are a lot of new therapies, and a lot of clinical trials looking for new drugs all the time. So you should stay hopeful. I think she said it the best. Thank you.

Transcript Edited for Clarity