Expectations at Home | Care and Monitoring After CAR T

Katherine Banwell:

Well, do you have any guidance for creating a home environment to support recovery?

Dr. Krina Patel:

Yeah, so, within the 30 days or two to four weeks when you’re at the CAR T, and I say that because it’s different for each CAR T, so it could be a different time limit that you have to be at these places when you’re getting your CAR T.

But during that time, we really want patients to sort of stay in an infection-free environment as much as possible.

So, this is where we want to make sure patients are wearing masks for going outside, making sure no one in the house is sick, or if they are, really quarantining or figuring out a way to get our patients sort of in their own environment where they don’t have a risk of infections. And then again, just having things that give you peace of mind.

So, some of my patients, if they’re coming from out of town, will bring lots of pictures or a picture wall that they make, that they bring, sort of as inspiration to say, “This is why I’m doing this,” and remembering all the things that are back home waiting for you when you get there, right?

And so, again, creating an environment where you’re not being in – we want you to go and enjoy going to the grocery store and going to church and going to school and doing the things that you want to do, but we’re still going to be a little bit restrictive on making sure that you don’t get infections. After six months, things kind of come back to normal, because that’s when people get their vaccines and we know they’re doing well and we don’t worry about other side effects, and so really, it’ll be less stressful than the first 30 days.

But we still need somebody to keep an eye on things in case there’s something happening in that first six months.

Katherine Banwell:

Yeah, right, that’s great advice. We know that the infusion process is short and fairly uneventful, hopefully. What can the care partner expect once the patient has been released to go home?

Dr. Krina Patel:

Yeah, so, you know, I think it depends on what happened during those first 30 days. Now, most patients, they might have a fever and they needed treatment for CRS, but really, after the fever was done and this CAR Ts are kind of done with what they’re doing, they feel back to normal and sometimes feel better than when they did coming into the CAR T, because their myeloma is usually controlled by then.

Some patients could have a little bit more. They could have gotten an infection during that time where they’re getting their CAR T, so, it takes a little bit longer to recover. They could’ve had other complications like neurotox. Again, very rare, but if that happens, we’ll have specific letters and things we give your oncologist and things that we tell you.

But for the most part, I’ll say 90 percent, 90 plus percent of our patients are going home excited that they’re going home. We’re actually going over their results at that time to say, “What did your PET scan show? What did your bone marrow show?” So, not just toxicity at this point, but what are the results of the CAR T? And it’s usually a really, really positive experience, but really, it’s going to be about that communication afterwards.

So, we’re excited to get you home, but that doesn’t mean we don’t talk to you anymore. So, really, between your local doctors and us, we’re still going to keep an eye on your blood counts, so some people might still need blood counts every week or every couple of weeks to make sure they don’t need transfusions or help to bring their white count back up.

That gets less and less over time, but for most of my patients, I’ll still talk to them once a month the first three months just to check in and make sure everything’s going okay. And then usually after that, we start talking to them every three months, and really, after that first year, we sort of go into that survivorship mode.

So, again, it’s sort of a gradual graduation, as I like to tell my patients, but we really want that communication. I will say, the biggest thing that I really tell my patients is, sometimes they forget, and this is where our care partners could really help, is that if something is going on and you hear your loved ones saying that, “Just today, I’m not feeling so well,” and they’re saying that a few times a day, or they just say, “Hey, I have this pain or I have this neuropathy,” or something that’s different, there’s not a symptom small enough.

Just send us a message, right? It could be as small as just sending a MyChart message or sending a voicemail or something so that we know, so we can check in with you, we can call you and say, “Okay, if this happens, then we really need to see you.” Again, the risks are so low, but when it happens, we want to know as soon as possible. So, that communication is still the main thing that we want in those first three to six months.

Katherine Banwell:

Can you talk about the short-term side effects associated with CAR T-cell therapy?

Dr. Krina Patel:

Yeah, so, I think for us, again, because we try to get that myeloma down so well before people come in, 30 percent of our patients do the entire process outpatient and never get fevers and do great. And there’s really, they might get some fatigue, so the way T cells work is, thinking about when someone has the flu or another viral infection, you get fevers, you get the muscle aches, you can get chills and shakes, things like that, and most people feel like maybe a truck ran them over for a couple of days, just because they’re so tired.

And I will say, that’s what the T cells – that’s because of the T cells when they’re fighting infection, and same thing with myeloma. So, if you have a lot of myeloma, you can imagine there’s going to be a lot more inflammation, versus people who have very little myeloma, again, 30 percent of our patients do the whole thing outpatient, have no symptoms except maybe a little fatigue that gets better over time before they go home. Patients who have some myeloma or have an immune system that just happens to be more active, usually it’s the fevers and potentially night sweats.

So, at night, people can have cold and night sweats, and they’re sweating through their bed. Again, that’s when we want to make sure if they have a fever, they’re in the hospital during that time period, and we discuss that.

We make sure patients don’t have infections, and usually it’s the cytokine release syndrome, because those T cells are going after the myeloma and that’s what’s causing it. Rarely, it could lead to some neurotoxicity, so again, for our older myeloma patients, fevers can even cause delirium sometimes. So, if something’s just not making sense, we bring them in, we treat the inflammation, and usually that turns it around within 24 hours.

When someone has true neurotoxicity, sometimes the first thing that we see is that they can’t write a sentence anymore. So, for our patients, we see them every day for the first 10 days, and we make them write a sentence in front of us while we do this neurotox questionnaire called the ICE questions. And if anyone scores less than a 10 out of 10 on there, we actually admit them to make sure we don’t need to give steroids and make sure it gets better before we get them out.

So, those are sort of the acute things that we look for and our teams are actively looking for on a daily basis for the first 10 days. And then infections are always something else we make sure, if someone has new symptoms of upper respiratory type symptoms, a new cough, sputum production or runny nose, especially during the winter, we quickly look for influenza and RSV and all those types of things if we’re suspecting it.

Katherine Banwell:

Right. Is there kind of a rule of thumb when to contact the healthcare team?

Dr. Krina Patel:

Yeah, so, in those first –

Katherine Banwell:

Would you say anytime?

Dr. Krina Patel:

Anytime, exactly. So, we actually give lots of numbers out. So, we give our numbers out during the daytime versus nighttime, what we call the ACCC, which is our ER. At MD Anderson, we give that phone number or how to get there. So, if there’s any question, there’s always going to be a number you can call 24 hours for us, and most centers will have that, versus just coming straight to the ER at the hospital so that we can kind of evaluate, make sure for our patients they have a special banner in their chart that says CAR T.

So, they’re triaged a little bit differently, and there’s always a faculty member on call 24 hours. So, the second they come, there’s somebody that’s going to be called to say, “Hey, what do we need to do? Do we need to admit them, do we need to give them something and send them back out?” So, that way you have, you always have access to somebody in that acute period.