Stronger Together: Essential Advice for CAR T-Cell Therapy Care Partners

Katherine Banwell:

Hello, and welcome. I’m Katherine Banwell. Today’s program is part of the Patient Empowerment Network’s Care Partner Toolkit series, focusing on the role of the care partner when a loved one is undergoing CAR T-cell therapy. Today, we’re joined by a specialist who works with myeloma patients and their care partners, but before we meet our guest, let’s review a few important details.  

Before we get into the discussion, please remember that this program is not a substitute for seeking medical advice.  

Please refer to your healthcare team about what might be best for you. Well, let’s meet our guest. Joining us is Dr. Krina Patel. Dr. Patel, welcome. Would you please introduce yourself?  

Dr. Krina Patel:

Sure, thank you so much for having me. So, I am an associate professor at MD Anderson Cancer Center, where I’m a myeloma section chief and research lead, and we do lots of CAR T for our myeloma patients. 

Katherine Banwell:

It’s so good to have you with us today. Thank you for joining us. Before we get into the role of care partners, let’s talk about how CAR T-cell therapy has changed. Are there any recent advances that you’d like to share with the audience?  

Dr. Krina Patel:

Yeah, I think the evolution of CAR T therapy has just been so fast, and again, in myeloma, we’re actually seeing some of the new targets as well as new ways of manufacturing and trying to make these cells a lot faster.  

You know, compared to other treatments in myeloma, this is the one treatment where we actually have to make it personalized for each patient, and again, our goal is always to improve. So, our first CAR T was approved by the FDA in 2021, and I will say, since then, a lot has happened. The time to actually get the CAR Ts back has been much better. So, four to six weeks. Before, it would take a few months.  

But I think the biggest new therapies that are coming out really come down to, there are no targets with GPRC5D instead of something called BCMA, which is what all of our CAR Ts right now go after. There are some that are dual-targeted now, so, CD19, a different target on the myeloma cell with BCMA, and then again, combinations with other therapies.  

And then the one big thing that came out of ASH, which, I still feel like a science fiction to me, is something called in vivo CAR T. So, there are only four patients that they’ve talked about so far, but everyone’s excited about the future of this.   

But giving the vector that actually makes the CARs directly to the patient so that we don’t have to actually manufacture any cells, that the CAR Ts are made in the patient and they don’t require the lymphodepletion chemo or anything. So, again, we have time before that comes out, but just really cool stuff about how CAR Ts are just going to get better and better. 

Katherine Banwell:

Wow. That’s excellent. Remind us what ASH stands for.  

Dr. Krina Patel:

Yeah, sorry. So, our big hematology, the big hematology nerds that we are, we have a meeting every December of the American Society of Hematology. At the last day, they have big presentations, usually about five, and this year we had two for myeloma, including that the in vivo CAR T for just the four patients, so it was a big deal. 

Katherine Banwell:

Mm-hmm. Well, let’s get into the information for care partners. First of all, why are care partners essential members of the healthcare team? 

Dr. Krina Patel:

Yeah, and I think this is the entire journey of multiple myeloma. When our patients are going through treatments, there are going to be days that are great. 

There are going to be times when there might be complications, infections, and really, with CAR T therapy, because there are nuances and potential complications, at least in the first couple of weeks, patients, their care partners are so, so vital to the process that if someone doesn’t have a care partner, at least for the first couple of weeks, we actually won’t do the CAR T therapy, because it’s really important that in case somebody has any side effects, that there’s somebody there to bring them in and kind of keep an eye on things.  

And again, I think with CAR T therapy, we’re evolving. It used to be four weeks and eight weeks that patients would need a care partner, and we’ve learned so much that we know our patients don’t really get the neurotoxicity that we were worried about before, but there are certain patients that, especially in the first couple of weeks after CAR T, that that can happen. And so, again, our care partners are the folks that actually can take care of these patients the best and call us when they need us. 

Katherine Banwell: 

What is the role of the care partner, of someone who’s undergoing CAR T-cell therapy? 

Dr. Krina Patel: 

Yeah, so, I think this is the person who can speak for the patient if something is going wrong, so again – or if they are just somebody who doesn’t like to tell us things. And so, a lot of my patients will tell me if they’re not feeling well. Others will sort of say, “Eh, it’s probably just expected, so maybe it’s just I’m getting older,” and usually care partners are the folks that really recognize if something is different, day to day.  

And again, they are the folks that can communicate to us to say, “Listen, this is something that’s going wrong,” or, “Hey, they’re just a little different.” And that, again, with CAR T therapy, the outcomes have improved so much, but part of the outcomes improving is because we can intervene a lot faster now before waiting until things get really bad. 

And so, again, it’s not just serious things where someone could all of a sudden have a fever and they’re not making sense and they’re delirious and they wouldn’t be able to call an ambulance to get to the hospital, but it really is even the little things.  

Sometimes we’ll see people with low-grade fevers that maybe they just called someone the wrong name by accident that most of us would say, “Okay, it’s fine,” but that care partner knows that patient much better and would say, “No, that doesn’t seem right,” and I can intervene faster to make sure they don’t have the bigger delirium and those types of things.  

So, again, it’s the entire time, from the chemo and apheresis all the way to the cells and the two to four weeks after, and even after that, it’s not – the journey doesn’t end after our patients are done with their CAR T therapy. It really is the survivorship part of CAR T afterwards, and again, having that extra voice is so, so important. 

Katherine Banwell: 

When a loved one is considering CAR T-cell therapy, what sorts of questions should care partners be asking during the consultation? 

Dr. Krina Patel: 

Yeah, this is a fantastic question. So, in myeloma and other diseases, we know that patients who have less myeloma going into the cell therapy piece of it truly have better outcomes, meaning that they have less toxicity from the CARs, and they have better efficacy. And again, if you think about it, these T cells are alive. It’s like a war inside your body, so, if there’s more of the good guys, the T cells, and less of the enemy, the myeloma, those T cells don’t have to work as hard to kill.  

And every time a T cell kills a myeloma cell, there’s a lot of inflammation that happens. So, if there’s less myeloma, we know that those patients are going to do better. So, the biggest questions to ask your doctor are, “When my partner is going through this, how will they knock that myeloma down?” That bridging therapy is so important. The other big thing I would say is, once patients are coming back for CAR T, we have to make sure they don’t have infections. 

So, are there special precautions you have to take during that bridging therapy? Should they get IVIG to kind of help prevent infections? How long should they be off the treatment before you actually come back for the CAR T therapy, and then afterwards, it really is going to be, it’s a great therapy, but the first few months, there’s a lot of supportive care.  

And so, making sure that there’s a checklist usually that we give our patients to say, “These are the therapies you need in addition to the CAR T,” and really having that calendar, maybe, ready to go so that you know what they’re supposed to do once you go home. We’re always available if you need, but again, it’s just the organization of the different types of supportive care you need from, again, from the apheresis, when the cells are collected, to the bridging therapy, and then through the CAR T process. 

Katherine Banwell: 

Once someone has decided to undergo CAR T, what advice do you have for preparing for the CAR T-cell therapy process, and how can a care partner be helpful during this time? 

Dr. Krina Patel: 

Yeah, so, I would say that, again, for most patients, after you’ve had apheresis, you’re probably going to have one to two months before you actually come back for the CAR T therapy. And during that time, again, it’s really important that we are giving you treatment to make sure your myeloma comes down or stays controlled, if it already is at low levels. So, making sure you’re taking your treatments.  

And then, if you have infections. So, the biggest thing that can happen is if someone gets an infection during that time, we really want to make sure that’s treated before they come back for their CAR T. So, let us know, let your primary oncologist know if you’re somewhere else before coming back for the CAR T. I think the other piece is if you’re having side effects, if something’s going on, even with the bridging therapy, because most of the time, we use something different that patients haven’t had before, and so if there are issues, letting us know right away so that we can adjust things. 

Because, again, our biggest concern is that when you get to CAR T, we want to make sure you’re doing well as well as your counts, and making sure you don’t have infections so that you can have the best outcome after. This is also the time I tell my patients who might have, you know, extra pain from their myeloma, our goal really is to control all of that before you come back. We want the CAR T to cause the least issues possible, so, that’s our time period to try to help.  

Tell people to eat a heart healthy diet, staying hydrated, walking, learning how to stay focused, and especially if you’re moving to another city, figuring out ways to make sure, like you’re coming to Houston, Houston traffic can cause craziness for some people. So, just mentally preparing, right? That this is going to be a few weeks, but really, just getting your whole body ready for this. And I think the care partner is a person who can keep people in check. 

I will say, the care partner also has to mentally prepare and be ready as well, just as important as our patients. But again, this is sort of where you get to be that life coach for that patient to kind of get them through until they come back to us for the CAR T. 

Katherine Banwell: 

Well, that was my next question. Dr. Patel. How can care partners prepare for this time?  

Dr. Krina Patel: 

Yeah, I think this is really important. For most of us who have somebody in our family we’ve taken care of, it can become hard, especially when you’re uprooting your life and everything for you goes on pause as well. Of course, you want your loved one to do well, but you have to take care of yourself.  

And so, again, depending on if you’re in the city already or you’re going to have to move to a hotel or somewhere nearby for a few weeks, just making sure you bring things with you that kind of help you get through, and whatever hobbies you have that you can transport to where you’re going, and then, and taking care of yourself again physically and mentally.  

It’s also heart healthy diet, exercising, staying hydrated, keeping in touch with friends and loved ones. Ways that you have outlets for, you need those when you’re coming to see us, too. So, sort of making sure that all of that is checked off, and then I actually tell my patients and their caregivers and care partners that maybe even having someone on standby that can help during that time, that you don’t have to have one care partner the entire time you’re here, and for some people, when they work, they might not be able to take four weeks off.  

And so, really having a team of care partners, even if it’s just for weekends versus the weekdays, but having that calendar ready so that it’s potentially, if you get sick, for instance, which we get viruses and all kinds of things that are on the outside, then there’s somebody else that can help take care of your loved one while you’re recovering as well. 

Katherine Banwell: 

Right. And caregivers can always use some time off as well. 

Dr. Krina Patel: 

For sure. 

Katherine Banwell: 

Yeah, yeah. 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. 

Katherine Banwell: 

Dr. Patel, it’s important for care partners to take care of themselves while looking after their loved one. Why is self-compassion essential during this time? 

 Dr. Krina Patel: 

Yeah, I think today especially, every year, I feel like life just gets faster and faster, but burnout is a real big thing in everything we do. So, not just work or school, but when taking care of somebody, because again, sometimes we forget and we put so much time and effort and energy into taking care of somebody else, because we want to make sure everything goes well, you forget to take care of yourself. And again, that can lead to both physical and mental just burnout.  

And so, it’s really important that you take time for yourself. And again, this is why having extra help or when patients do end up in the hospital, let’s say because they’re having a fever, I tell my patients’ care partners, “Please go home at night, get rest at home, because at the hospital, people are coming in all the time to do vitals and you just don’t get sleep, and this is where we’re watching. You know, we’re watching 24 hours a day. So, this is the time for you to get time for yourself, especially if that’s happening.  

And we want to make sure you get communication. We understand that you want to be there for your loved one, but really getting proper sleep during this time, getting, again, proper nutrition and just sort of a mental outlet is really, really important. And so, when you can use us to help you, if your loved one is in the hospital, do it, even if it’s just for a few hours a day, take time to leave, and we will let you know if something happens.”  

Versus if it’s outpatient, on the outpatient side, again, having somebody else that can maybe come on the weekend so that you can take time off, or some of our patients have had somebody come just for a half-day, and then their loved one, their care partner was able to go home and sort of shower at home, take care of the pets and that type of thing and come back. So, whatever you need to do, just making sure you have that backup. 

 Katherine Banwell: 

How can someone recognize the signs of burnout? 

 Dr. Krina Patel: 

Yeah, so, I think the biggest one is just fatigue. If you’re noticing that you’re tired, that can be, again, it could be not enough sleep or other things, but really, fatigue and just depression. I mean, feeling sad about certain things or really anxious sometimes, when people get really, really anxious, that can actually be a sign of burnout as well, and for us, for our CAR T patients, I mean, we have huge resources. We have big teams. We have social workers. We have case managers. We have our CAR T APPs, our CAR T nurses. 

And so, our folks are there to actually help figure out if that’s happening, and so, I think the biggest thing you can do is just kind of tuning in and seeing if you’re having symptoms that you usually don’t have, making sure you reach out to us, because we could help figure out ways to make sure you’re doing okay, too. 

Katherine Banwell: 

Well, we know that seeking care with a mental health professional or joining a support group is really beneficial. What would you say to those who may be hesitant or nervous to take advantage of these resources? 

 Dr. Krina Patel: 

Yeah, I think it’s just like you go to the doctor to go get your cholesterol checked or make sure you have prevention, right? Most of us, we live in a very stressful world day to day. Doesn’t matter if it’s just this situation, but this is an added stress, and I think we need all the help we can get, and this is for everybody involved. This is even including the care team, so, us as providers and physicians. Really having that outlet to talk to other people is important. 

I think the myeloma world, we have some of the best patient support groups that are out there, and care partner groups as well. And at times, it can be a little bit daunting. If someone has had a bad experience, for instance, it can actually cause anxiety. So, I tell my patients to take it with a grain of salt in terms of what is being discussed, but I think really important to make sure that whatever institution you’re at, we have lots of resources.  

And so, again, for my patients, our social workers are sort of first line so that even when they come for their apheresis appointment or we’re talking about CAR T, we usually just have them start talking to the social worker right away so we can actually give them a lot of resources for these things.  

And again, I know it used to be taboo, and for some people, it still is, but for most of us, we think of the entire body, physically and mentally. Even when we talk about steroids for our patients with myeloma, we know that it can cause mental distress. And so, this is something with myeloma patients.  

We’re used to saying, “Okay, we need to back off or we need to do something different,” and I think that’s just as important for the care partners, that we have to make sure that their mental health is doing well, too. 

Katherine Banwell: 

Are there any other resources available to help care partners of patients undergoing CAR T? Anything online, for instance? 

Dr. Krina Patel: 

Yeah, so, I think there are quite a few different potential options. So, for instance, the LLS, which is now the Blood Cancer United group, has a lot of resources on CAR Ts and sort of what patients have to go through, just, again, to mentally prepare yourself as to what this process is going to be.  

Dr. Krina Patel: 

So, there are definitely a lot of different groups, like the American Cancer Society, a lot of patient, myeloma-patient specific groups as well, I think, Myeloma Warriors, HealthTree. I mean, there’s so many, so I think talking to your physicians and who they work with quite a bit. So, my patients, I actually have them watch videos that we’ve done. So, I’ve done a lot of videos for patients and their care partners in the past.  

That way, they get a little bit more information again in small doses, because sometimes when I’m speaking, it’s 15 minutes in clinic, and it’s a lot of information and you might not remember it all, but those videos are really, really important. And I think, again, really talking to the institutions, because we do have a lot of access to real time people that you can call and discuss with, and we’re happy to make sure we have everything you need. 

Katherine Banwell: 

Before we move onto some audience questions, I’d like to add that the Patient Empowerment Network has a wealth of resources available for care partners. You can find these at PowerfulPatients.org, or by scanning the QR code on your screen.  

Well, Dr. Patel, as I mentioned, we received some questions in advance at the program from our audience members. Erica wrote in this question. “I know exercise can be beneficial for both of us in recovery. What do you recommend as a starting point, and when?” 

Dr. Krina Patel: 

Yes, exercise is very important. I will put a caveat to that. For myeloma patients, it really is based on if they have bone disease or not, and if they have active bone disease, that we have to be careful. So, I usually tell my patients, if they have any bone issues or frailty issues, just walking is such a great way to really make sure that you’re keeping your cardio but not doing too much.  

So, for our patients, again, who are older, who might be a little bit more frail, walking 30 minutes a day, even if it’s 10 minutes at a time and you split it up over three days, all the way to, I have some younger patients who are really fit and they don’t have bone disease, and it’s really just anemia that’s gotten better, because their myeloma’s actually controlled when they come in. Well, they want to do a lot more, and they might want to go to the gym and do weights.  

And again, I tell people that during this time, it’s really important to continue with activity, but there are going to be days where you’re tired, especially when those T cells are doing what they’re supposed to be doing. So, don’t push it. If your body is telling you, “I’m tired,” you slow down, you take a nap, that’s okay. And again, going back to just walking, that actually helps quite a bit during that CAR T period, and then once you’re done, that 30-day period, I will come back and say, “Okay, this is the exercising you can go back to.”  

And again, even though most patients feel relatively well when they’re leaving to go back home, there might be some people that still have some fatigue, and they might have to bring back their muscle memory.  

And so again, especially if patients had any kind of infections or anything else during that time, so, it’s still figuring out how to get back to that marathon instead of running the race the entire time, right? Listen to your body. Same thing for our caregivers and our care partners. Our care partners, usually, you’re not going through the CAR T process. So, go to the gym if that’s what you do usually. Go walk outside, as long as it’s nice outside, or indoors if you can find a place to walk indoors.  

And then some of our care partners do have other health comorbidities. And so, for older patients especially, sometimes their care partners might have heart issues or other things. And so, again, making sure you have all your correct medications with you, and again, if there are any issues at all, if you’re having any symptoms, letting us know so we can make sure you’re doing okay, too. But, really, it’s keeping up with what you were doing and then just building on that.  

But again, listening to your body in terms of, “Okay, do I need to call for help, or do I need to slow down?” And then take a break. 

Katherine Banwell: 

I think we forget that. We forget that, oh, maybe we realize that we’re a little tired one day, but we just think, “Oh, this is normal, maybe I didn’t have a good sleep last night,” but it’s really important to pay attention to how you’re feeling and then respond accordingly. 

Dr. Krina Patel: 

For sure. Again, just like your loved one is, the patients are at risk of infection, so are our care partners. You’re going in and out of the hospital where there are people that are sick, so, if you don’t feel well, let us know, and we’ll make sure everything’s okay. 

Katherine Banwell: 

Well, this next question comes from Jack. He writes, “My hope is that we can get into remission, but what are our options after CAR T?” 

Dr. Krina Patel: 

Yeah, so, I think now the other evolution of CAR T is it used to be in very late line that it was approved.  

So, fourth, fifth line beyond, and now we have CAR T in second and third line, and we even have trials that are in frontline, and so, patients are getting CAR T earlier and earlier. So, it really depends on when you’re getting that CAR T, but again, in myeloma, we have just exploded with the amount of therapies we have, which is fantastic. So, again, new targets. So, some of my patients will get a second CAR T if they’re eligible for some of our trials, some of our patients will go to bispecifics. 

We have trispecifics where they have multiple targets they’re going after at the same time. We have things called CELMoDs that are in clinical trials and potentially coming out soon. We have some antibody drug conjugates like belantamab mafodotin-blmf (Blenrep). So, again, it is a whole different world in terms of all the options we have, and it really is individual-based.  

There are some patients that have just a small increase in their numbers when they’re relapsing from the CAR T. We might be able to do something smaller to get it down. And there are others that have high-risk disease that we might need to do something more aggressive. 

So, again, it really comes down to each patient, but again, I’m hoping that CAR T is going to be the way that we can increase our progression-free survival, you know, how many patients are staying in remission longer and longer for many years?  

But yes, this is a really important point that no matter what, even when we send our patients to survivorship clinic, which is the first time where we’re actually having these survivorship clinics in myeloma now, we’re still going to watch that myeloma very carefully, because the second it starts coming up, we want to be able to knock it down before it does anything. 

Katherine Banwell: 

Thank you so much for those thoughtful responses. As we’ve been discussing, care partners are critical members of the CAR T-cell therapy process. Can you share some final thoughts with the care partners? 

Dr. Krina Patel: 

Yeah, I think this is an amazing time for myeloma treatment. I don’t want anyone to ever have myeloma, but the fact that we have so many therapies now, I will say, for me, if patients can safely get through CAR T, it is one of the strongest tools we have to knock this myeloma down.  

And the real moment that I know that this was something that – I was so excited that we have this for our patients is, when my patients tell me, when they come back at their six-month visit, their one-year visit, they’re off of treatments, they’re really not on much supportive therapies either, and they tell me they feel back to normal, the way they did before they had myeloma. Or they feel that they have their life back because they’re not stuck coming into infusion centers and getting bloodwork all the time, it’s the one therapy that really just changes quality of life.  

And again, this is where our care partners, they get to actually go on trips together, now. They get to go visit grandchildren more often, or kids. They get to do so much more. I’ve had patients go back to work and just have more fulfillment in life, and again, most of our care partners are really involved with our patients and their lives, and so, they get to benefit from it too.  

And so, again, it sometimes feels daunting that you have to go through all of this, but again, the goal is that this is a short time period where we have to do all of this, but hopefully getting years of just really good quality and quantity of life afterwards. 

Katherine Banwell: 

Dr. Patel, thank you so much for joining us today. 

Dr. Krina Patel: 

Of course, thank you so much for having me. 

Katherine Banwell: 

To access tools to help you become a proactive care partner, visit PowerfulPatients.org. I’m Katherine Banwell. Thanks for being with us.