What are some things patients nearing the end of treatment should know?

Patients nearing the end of treatment should know?

Depending on what treatment you choose, upfront for healing, there's either a continuous therapy option, right?

So those are typically the bruton's tyrosine kinase inhibitors are given until disease progression.

And so those folks don't have to worry about what to do and have treatment because it doesn't end until their disease progresses for time.

Limited therapies which which honestly I think the field is really moving towards and in the future I I'm my guess is that's going to be the standard even for bruton's tyrosine kinase inhibitors to just, you know, be aware that your treatment is ending, but your relationship with your oncologist is not.

And it's important to maintain that relationship to you. Go to your regular surveillance visits to make sure that you're being followed, to look out for the things we talked about earlier, the sort of warning signs that the disease might be coming back.

And then in terms of the things that you can do as a patient to try and maximize the time off therapy, there's really two things that I like to tell every patient to think about doing.

The first is good nutrition and so what does that look like? What does that mean?

Well, there are a lot of nutrition studies that that sort of make the headlines and then go away.

So for a while it was kale is the best thing in the world and it was avocados and then it was dark chocolate.

And so a lot of these studies are smaller studies. They're not always super well done.

But when you ask again and again what comes out of nutrition studies, it's diets that are high in fruits and vegetables and low in saturated fatty acid.

So basically eat your fruits and vegetables is what you can do.

And then the other thing which I would argue is, is as important or maybe more important, it is regular physical activity.

So exercise is medicine. It it it alters your body in in ways that are beneficial to you.

I can't tell you for sure that it keeps Callaway longer, but there are lots of studies in cancers, different cancers that are showing that folks who are regularly physically active have longer remissions and longer less probability of recurrences.

And the only side effect of exercise is increased health.

So I really would empower patients to think about how can I maximize my diet and how can I maximize my physical activity.

And it doesn't have to be running a marathon.

You don't have to go from the couch to a marathon, just something that makes you sweat 20 minutes a time, three times a week is a great place to start.

Obviously, if you have health issues, bad COPD, heart issues, you want to do this in consultation with your primary care doctor and you always want to listen to your body.

So if you're getting dizzy when you're exercising, if you're having chest pain when you're exercising, those are red flags that stop immediately and talk to your primary care.

Doc So it's really, like you mentioned, depend on what treatment you and your doctor selects.

So the BTK inhibitors are really taken either until there's a side effect that you have to stop taking it or they stop working and you move on to another treatment.

So that's really what we call a continuous treatment.

But there's another treatment called venetoclax.

And it's this is used for the initial treatment. It's combined with this is a pill combined with an IV infusion called over to the MAB.

And for example, this treatment is given for approximately one year is what we call time limited or fixed duration treatment.

And then, you know, historically, patients received what we call fixed duration treatment or a time limited treatment with the chemo immunotherapy,

something like you might have heard of bendamustine were talks of MAB or fc R flu there being cyclophosphamide rituximab.

We don't really use these very much anymore, but those were kind of fixed duration.

So like you mentioned, some patients will have that time where they come up towards the end of treatment.

We're still, you know, for the chemo immunotherapy, which we're not using as much anymore.

There were potential for long term side effects, including one with the ACR regimen that we see is something, you know, actually a secondary

MDS or a AML could could emerge in a very, very small number of patients over time.

And so blood counts were monitored over time with venetoclax, an open a tue mab fixed duration treatment.

We're still learning it is a newer regimen.

So we have five years of follow up from the initial treatment now from clinical trials, but we're still learning whether what it will be like 10 to 15 years down the line.

And so as that data comes out from the initial clinical trials, well, we'll have a better idea.

But one thing about Khalil is that, you know, unfortunately in 2023, it's still not incurable.

Disease is very, very well managed and patients can live as long side the diagnosis for decades.

But even when the treatment ends, if you're doing a fixed duration treatment, it's important to continue following with your oncologist because many patients, if they're in a remission,

still need to be followed because there is a chance of the of the CLL, you know, coming back and needing really needing treatment again.

And so that relationship doesn't totally end when that when the treatment and.

What can I do when I'm not being treated currently?

How can I deal with any anxiety? Education programs like Health Tree are excellent to kind of find out more about that, you know, clue what it's like as a disease because it is very different from other cancers.

The other thing that I think you know is really important with all this is a cancer of the immune system.

And so even if we're not starting treatment against the cloud, there's other preventative measures that we can take.

You know, patients with a higher risk of infection because, the B lymphocytes are the cells that are dysregulated in CLO and these are cells of your immune system.

We also know that other cells of the immune system not involved with the class, something called T cells, are impacted in patients with CLL.

And so while live vaccines, patients should not go with CLL, there's a host of other vaccines

I do recommend to patients a flu vaccine every year, the COVID 19 vaccine series and then pneumonia vaccine series and Shingrix vaccine series.

And then just staying up to date on other cancer screenings.

So we do see a higher risk of other cancers, including skin cancers.

I have patients go to the dermatologist just for a skin check once a year because a lot of times with the screening, things can be caught very, very early

and, you know, not be removed, not become a problem.

And same thing with things like mammogram, colonoscopy, pap smears, prostate cancer screening.

So all those other things, you know, we are actively doing, even though, you know, you might not need treatment for the CLL itself.