Myeloma Care Partners | How Can You Support Your Loved One During CAR T-Cell Therapy?
How can care partners be informed and prepared when a loved one is undergoing CAR T-cell therapy? Myeloma expert Dr. Adriana Rossi explains the role of the care partner in each step of the CAR T process, how to understand and monitor for side effects, and shares key advice for self-compassion and self-care when serving as a care partner for a loved one.
Dr. Adriana Rossi is Director of the CAR T and stem cell transplant program at the Center for Excellence for Multiple Myeloma at Mount Sinai Health System in New York City. Learn more about Dr. Rossi.
See More from The Care Partner Toolkit: CAR T-Cell Therapy
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Transcript:
Jamie Forward:
Hello and welcome. I’m Jamie Forward. 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 myeloma specialist who works with patients and their care partners. Before we get into the discussion, please remember that this program is not a substitute for seeking medical advice. Please refer to your own healthcare team about what might be best for you. Let’s meet our guest today.
Joining us is Dr. Adriana Rossi. Dr. Rossi, welcome. Can you please introduce yourself?
Dr. Adriana Rossi:
Yes. Nice to be with you today. I am the director of the CAR T and Stem Cell Clinical Program at Mt. Sinai in New York.
Jamie Forward:
Thank you so much. We’re glad to have you with us. Dr. Rossi, before we get into the role of care partners and the CAR T process, let’s talk about what CAR T-cell therapy is. Can you please give an overview of CAR T and how it works to treat myeloma?
Dr. Adriana Rossi:
Absolutely. CAR T are genetically engineered cells. So, we generally use the patient’s own T cells, modify them to make them special killers just for that patient’s myeloma. And then, infuse them back into the patient over a process that I’m happy to go into in much more detail.
Jamie Forward:
Sure. And, we’ll cover the process a bit later in the program. So, we can walk through that in just a bit. So, where does CAR T-cell fit into a myeloma treatment plan?
Dr. Adriana Rossi:
Well, we originally had approvals in patients whose myeloma three or four times. But, in 2024, now the two commercially available CAR T products, one ide-cel (Abecma) and the other cilta-cel (Carvykti), are now both approved in earlier lines. So, we actually could potentially be eligible for CAR T after your first relapse. As long as you’ve had a number of therapies up front.
Jamie Forward:
Okay. And so, when you say lines of treatment, that’s basically the number of therapies you’ve had so far?
Dr. Adriana Rossi:
Right. The number of times the myeloma has come back. So, regardless of whether it’s one drug or three drugs together – we now often use four drugs together.
But, we start off with a certain amount of myeloma and we treat it until it’s in remission as deep as we can. And then, we try to make that remission last as long as possible. Unfortunately, myeloma tends to eventually make its way back. That’s called the relapse. And then, you would start a new line of therapy. So, once the myeloma has come back after treatment, CAR T would be an option.
Jamie Forward:
Okay. So, obviously a care partner is a part of this process, as is today’s focus of the program. So, can you walk us through the role of a care partner of a patient who’s receiving CAR T-cell therapy?
Dr. Adriana Rossi:
Absolutely. And, many patients and their families will have experience with stem cells. I think the first thing to keep in mind is this is nothing like a stem cell transplant. Yes, there are cells that are collected. There’s chemotherapy and the cells are infused in a hospital setting.
But, other than that, they are really very different experiences. And, given that’s what we would consider a long journey of CAR T through apheresis, which is the collection, then a bridging therapy while the cells are in manufacturing. Then, the hospital stay, and then the monitoring after. I think all of that is not a solo undertaking, and it really is essential to have one or more caregivers in that setting.
It’s really important to have a second set of ears at the consultation so that that amount of new information, all the big words, how things go together, meeting people is a little less overwhelming. The whole getting ready for the CAR T. There are a lot of different doctors’ appointments. We like to check that hearts and lungs are healthy. A dentist needs to check you out and make sure there’s no infection. So, just an overwhelming process.
And, every step of the way, that’s going to be made easier if you have someone by your side.
Jamie Forward:
Sure. It sounds like there’s a lot of coordination that takes place, as well. So, an extra set of hands is always useful there.
Dr. Adriana Rossi:
Yeah.
Jamie Forward:
Great. So, the care partner is a key member of the healthcare team as we established. So, who are the other members of the CAR T-cell therapy healthcare team?
Dr. Adriana Rossi:
Yeah. It’s really important to recognize just how big that team is. We always have the CAR T physician. That one’s easy. A physician is usually supported by nurse practitioners or physician assistants and nurses that are part of again, getting all of the appointments organized. In all of this, we tend to have CAR T coordinators. Both to make sure the paperwork and the insurance side of things are done. The clinical appointments. But, it’s also important to recognize, as we were talking about, coordination. Transportation. Sometimes, patients need to stay close to a center that’s far from home.
So, social work and all of those folks become very important. And then, there are a number of different steps with different drugs. So, our pharmacists are very important. And then, beyond that, any of the other doctors that keep our patients optimized. So, if there’s a cardiologist, a pulmonologist, an endocrinologist. All of those physicians working together.
Jamie Forward:
Sure. As you’re preparing for the CAR T process and you’re meeting with patients and their care partners, what sort of advice do you give them about the process as you’re setting the stage?
Dr. Adriana Rossi:
Yeah. I think it’s very important to ask questions and never think there’s a bad question, or a stupid question, or whatever. There are no limits. I know this is a completely new language, and I think it’s important even if you’ve asked it before, keep asking until it’s clear.
And, don’t ever think you’re bothering us or anything. I’ve heard that, and it just doesn’t compute on our end. We are here to teach and support. Secondly, to take time. I think it’s really important to not think, “Oh, I’ll do this, and then I’ll run off and do something else, and then I’ll come back.” Or, have other commitments. Really allow both the patient and the caregiver protected time to be together and to just go through everything that this journey requires. And, for the caregivers to look after themselves. I think it’s really important when you’re trying to take care of someone who has the label of patient, you need to take care of yourself, as well so that you can then be of use to the process.
Jamie Forward:
That’s great advice. So, as I mentioned, now we’re going to sort of walk through the steps of the CAR T process and what happens in each step, and how the care partner can support the patient during this time. So first, is there a consultation once a patient has been approved for this therapy?
Dr. Adriana Rossi:
Absolutely. There are several consultations. The first one, once the patient’s identified by a referring physician, they will come and meet with myself and again, the coordinators and several members of that team to make sure that it seems like a good fit. That this is the right time, and identify any steps that we can take to really set that patient up for success.
Jamie Forward:
Okay. And, how can the care partner participate in this meeting? Are there key questions they should be asking?
Dr. Adriana Rossi:
Absolutely. Again, this is the beginning of the journey, and they should absolutely be there. Mostly because a lot of the information, this may be the first time they’re hearing again, the words. The concepts. The timeline. So, do ask about when things are going to be happening. As the CAR T physician, I do this all day. So, it’s very clear in my mind, but until it’s clear for them, again, ask more questions. Ask for clarification.
Be clear on what resources are available. If there’s something that there is a question like transportation, or sequential appointments, or children in the family. All kinds of things. Really be as curious and as vocal as you’re up for.
Jamie Forward:
Right. Arranging for childcare and pet care is probably really important during this time.
Dr. Adriana Rossi:
Exactly.
Jamie Forward:
What about financial planning? Is that a good time to ask about insurance and who to coordinate with there?
Dr. Adriana Rossi:
Absolutely. Again, you will meet with social work. But, if there are specific issues that we’ve already identified, specific resources, specific paperwork, we can get that started right away.
Jamie Forward:
Okay. Great. So then, after that, once all of that has been squared away and you’re ready to go into the CAR T-cell therapy process, there’s the T-cell collection, correct?
Dr. Adriana Rossi:
So again, to distinguish it from stem cells, I think it’s important to know it is a one-day collection for CAR T.
There are no injections or other preparations ahead of time. There’s no minimum number of cells that we’re aiming to get. It really is a one-day commitment to collect the cells that we collect, because they’ll be then engineered and modified before they’re ready. And so, it’s not the ordeal that sometimes you have to go through for stem cells.
Jamie Forward:
Okay. So, the care partner should just be there during that time to be a supportive loved one.
Dr. Adriana Rossi:
Exactly. And, it can be a long day. You’re tethered to the machine for a few hours. And, when all goes well, it is an exceedingly boring experience. So, be entertaining and be nearby. Always helpful.
Jamie Forward:
That’s great advice. So, once the cells have been collected, can you walk through the next steps? I believe there are bridging treatments involved. Are those administered inpatient or outpatient?
Dr. Adriana Rossi:
Absolutely. Bridging therapy is the therapy the patient receives while the cells are out being manufactured. And really, the goal there is not to get rid of myeloma. It’s just to prevent it from growing. Because myeloma that is not cared for tends to grow quite quickly. There are options to do it inpatient. To do it outpatient. There are certain therapies that would require the patients come to our center. Others that are easily given with their local oncologist. So, we really try to find something that the myeloma will be sensitive to, and that will hopefully not be too toxic, so there’s not a big recovery or a big downtime as we are preparing for the hospital stay for CAR T.
Jamie Forward:
Okay. And, how can care partners support the patient at home during this time? I would imagine it’s sort of an anxious time.
Dr. Adriana Rossi:
Absolutely. Many times, the bridging is something that may be familiar. Like, we’re recycling drugs they’ve seen before.
But, these could be brand new drugs. And, I think every time you’re experiencing a new cocktail, there is some learning of how will you react, and the anxiety that can come with that, as well. There are a few times when there are delays in the cells getting ready. So, it’s not a very exact day, and that waiting period, wondering will they really come on the day they’re expected absolutely could be an anxious time. I think keeping each other company and just actively working to be your healthiest self for whenever the CAR T is ready, and knowing that working with your physicians, we are all working behind the scenes to work to the greater success hopefully is helpful.
Jamie Forward:
Okay. That’s great. And then, finally in the process, the cells are infused back into the patient. Since this is a critical time for patients, how can care partners best be prepared to help their loved one?
Dr. Adriana Rossi:
One of the most common side effects is something called CRS.
Which patients experience as a fever. And, I think many times in blood cancers, we really worry about fevers, because those could be infections. I think it’s important to be prepared and expect the fever so that again, it’s not oh no, what is this? We were waiting for it. It tends to come at a very scheduled time dependent on the product. So, just reassuring. Remembering yes, there are toxicities, but they are expected. Plan for them.
The medical team will have an antidote. We’ll have steps that we take depending on what comes up. And, the reason for being in the hospital is exactly to allow the medical team to respond very quickly. Most of the time, very little happens, and that is wonderful. So, if anyone is feeling bored, that is great. Celebrate it with them. No news is good news during the couple weeks in the hospital.
Jamie Forward:
Okay. And, how long is the patient monitored for side effects in the hospital following new infusion?
Dr. Adriana Rossi:
So, depends on the product. Ide-cel tends to have very early reactions. And so, our policy is one week for ide-cel and two weeks for cilta-cel because there, most of the side effects are around seven days in. So, we wait for the inflammation to peak and resolve. And, once it’s safe, we aim to get patients home. But, once they leave the hospital, they should for at least a few weeks be very close to the CAR T center, and usually require two to three visits a week for that close monitoring.
Jamie Forward:
What are the short-term side effects associated with CAR T-cell therapy?
Dr. Adriana Rossi:
Absolutely. So, the T cells are part of the immune system. Their job is to grow and expand once they’re in the patient, and pick a fight with the myeloma, which will cause a certain level of inflammation. So, some inflammation is good. But sometimes, they overdo it, and it manifests itself as a fever. We call that cytokine release syndrome. Cytokines are the molecules T cells use to communicate with other members of the immune system. So, this is part of the process we are causing, but we want to keep it in check.
And, in the early days, we were very hesitant to do anything that could harm these precious T cells. But, we’ve learned in time that all of the antidotes, including tocilizumab-bavi (Tofidence) and steroids, don’t harm the effectiveness of the CAR T. And so, we’re very quick to intervene early and intervene with as many tools as we need. And so, that’s really become mostly just the fever. If left untreated, it can lead to low blood pressure and maybe an oxygen requirement.
Again, usually quite easily reversible. When the inflammation happens around the brain or the nerves, we call that neurotoxicity. Specifically ICANS, which is the confusion and neurological deficits that occur with CRS. Neurotoxicity also includes other things like a peripheral neuropathy, cranial nerve palsies like Bell’s palsy has been reported quite frequently. And then, very rarely, delayed neuromuscular toxicities, which again, by patient selection are becoming more and more rare.
And, the last is low blood counts, which we’ve touched on as part of the reason patients need such close follow-up once they leave the hospital. They’re very much at risk for infections, because they’re not making antibodies. Their neutrophils, which is the infantry type white blood cells, are low. And, their T cells are going to be low from the process.
Jamie Forward:
Okay. And so, for a care partner, what should they be looking for? And, when should they contact a member of the healthcare team?
Dr. Adriana Rossi:
I would say contact us anytime there is a question. It’s not too specific. Certainly, any fever. Any sign or concern for infection. And, any neurologic deficit. If someone is not acting themselves, the caregiver’s usually in the best position to recognize that.
Jamie Forward:
Okay. And, what are the long-term side effects?
Dr. Adriana Rossi:
Yeah. We’re still learning. Beyond a year, really there shouldn’t be many. We continue to support the patient until recovery of those antibodies, and T cells, and neutrophils. So, there’s a lot of preventive things. Monitoring and time. And, there are these rare neurological toxicities that have been reported, but they’re much less than one in 1,000. And so, it’s hard to learn or to make any generalizations at this time.
Jamie Forward:
Okay. And, as far as monitoring at home once someone gets back home, in the weeks that follow their time in the hospital, are there certain supplies they should have? It sounds like maybe blood pressure? Perhaps a scale?
Dr. Adriana Rossi:
Yeah. So, blood pressure and temperature probably are the two more important ones. We actually do discharge patients with a log, and for those first few weeks, we really would like at least twice a day for these numbers to be monitored. And, it’s patient-specific. So, the less you need, the more we graduate out to fewer measurements and less monitoring.
Jamie Forward:
When it comes to diet and nutrition, are there ways that care partners can help prepare or benefit to a highly nutritious diet? Is there anything related to diet and lifestyle that might be important to know?
Dr. Adriana Rossi:
No. I think there’s no restriction. The important thing is when your appetite is low, your body needs calories. We’re asking your body to get a lot of work done, and it can’t do that without calories. So, don’t be too picky on only eating fruits and vegetables. If it’s ice cream three times a day, go for it. Make sure you’re meeting a caloric intake. Certainly, nutrition is better. The only dietary restrictions we have are really kind of similar to after a transplant where we’re trying to avoid germs. So, foods that can be cooked, peeled, or washed are really the focus. Things like berries and salads can easily have germs sneak in. So, we do try to avoid those. And again, it’s usually just for that first month or two. Recovery tends to be quick.
Jamie Forward:
Okay. Great. So, have a lot of ice cream on hand. So, how do you know if the treatment’s working?
Dr. Adriana Rossi:
Well, most patients will have an M spike or light chain change. So, we can follow that by blood tests. And, as with any other therapy, it’s usually a monthly check of those numbers.
And then, we follow the paradigm we see in stem cell transplants at around day 100 doing a bone marrow biopsy and a PET scan.
Again, up to 90 plus percent of patients, will have a complete remission on their blood tests within a month. But, we wait until day 100 to really let that protein have time. There’s a certain time to clear from the system. Check the cells in the bone marrow and really give you full credit for all your efforts.
Jamie Forward:
Okay. Great. So, we’ve sort of touched on this before, but I think it bears reiterating. So, why is it so important that care partners let the care team know about any changes they see in their loved one?
Dr. Adriana Rossi:
I think early intervention really leads to success. Most of the toxicities will respond very well to an early intervention. If left untreated, be it an infection, a neurologic finding, a cell count issue, the longer it happens, the bigger of a problem it is, and the harder it would be to turn around.
So, something that could hopefully be a quick visit to the office could then become an admission to the hospital, and we’d really like to prevent that.
Jamie Forward:
Okay. Great. So, let’s talk a bit about self-care for care partners. I think this can obviously be a really taxing time. Why is self-compassion essential during this time when you’re caring for someone else?
Dr. Adriana Rossi:
Because many times, again, the focus is on the patient. But really, we need to recognize it’s stressful for all of us. And, the whole medical team is taking care of the patient. Very few people are paying attention to the caregiver. So, they really need to be able to ask for help. Hopefully, again, it’s not a one-man job. It’s rally the village around the person. We do ask for those first few weeks that it’s 24 hours a day the patient be with someone. But, it doesn’t have to be one person. So, have someone else come in, so you can go exercise, or go get a cup of coffee, or just spend time dedicated to self-care. So that then you can be as strong and as present as you can for the patient.
Jamie Forward:
And, what are signs of burnout? How can care partners recognize that?
Dr. Adriana Rossi:
Very hard to recognize, and usually it’s someone else who needs to point it out. But, emotional exhaustion I think is the most common, because it is such an emotionally taxing time. So, having a difficult time concentrating. Being irritable or pessimistic when sometimes the medical’s team’s like, “Everything’s going great.” And still, you’re like, “No. But, it’s not going to last.” Putting a negative twist is usually part of that. You just don’t have the reserves to look forward. And then, changes in sleeping, or eating, or regular habits can also be a flag.
Jamie Forward:
And, what advice do you have for care partners to make time for self-care? When can they find those spaces for themselves?
Dr. Adriana Rossi:
I think the biggest thing is to not think that it’s being selfish or that you’re taking away from the partner.
Think of it as something you are doing for the patient. You are not useful if you’re burnt out and if you’re spent. So, self-care really is a giving activity of strengthening yourself so that you can then be of most use to the patient.
Jamie Forward:
I think that makes good sense. So, there are obviously social workers at the centers, and obviously these larger CAR T-cell therapy centers have a number of resources. So, what is available to help care partners during this time?
Dr. Adriana Rossi:
So, social work will meet with the patient and the caregiver to tailor resources, and plans, and support in any way that is specifically useful to them.
Again, if there is specific paperwork that needs attention. If there are resources, for example, lodging, transportation. All of these things are really tailored to the needs of each individual.
Jamie Forward:
Okay. And obviously, this isn’t for everybody, but support groups are always a good idea, even if online.
Dr. Adriana Rossi:
Absolutely. And, we have a number of those. We’re lucky to have a group of social workers, and they each lead different groups. So, if one doesn’t seem to be a good fit, I also think keep looking. There are very specific ones like younger patients or patients of any particular group. But, there are also general patients. There are transplant-specific. And, more and more, there are CAR T-specific groups where patients share their experience.
Jamie Forward:
Yeah. It’s always nice to know that you’re not alone in these situations.
Jamie Forward:
So, are there in-home services that can be useful for CAR T-cell therapy care partners during this time?
Dr. Adriana Rossi:
I’d have to say that’s probably very specific to geographic areas. I happen to work in New York where there are a lot of home services, and it’s very population-dense, and a lot of the services are driven to that. I imagine in parts of the country where there’s quite a bit of distance between the facilities, there are probably programs that are more structured to provide those services. So, that’s probably fairly program-specific. But generally, yes. I just don’t know what they are for each part of the country.
Jamie Forward:
Before we move on to audience questions, I’d like to add that the Patient Empowerment Network has a wealth of resources available for care partners. You can find those at powerfulpatients.org or by scanning the QR code on your screen.
Dr. Rossi, here’s a few questions we received in advance of the program from our members. We can start with William’s question. How can a care partner manage the emotional aspects when a loved one is going through CAR T?
Dr. Adriana Rossi:
I think be patient. Recognize that it’s a really difficult time, even when everything goes according to plan and the medical is very pleased that there’s nothing untoward. It’s just a really stressful time for both of you. So, it’s where we go back to the self-compassion, as well. Take time for yourself and recognize your needs as a caregiver in addition. So, tapping in, again, other friends. A small circle rather than a one-person job. And, being really open with social work on what resources can be helpful. Asking for help, again, is a brave act. It’s not a sign of weakness at all.
Jamie Forward:
Sure. And, I think it’s often that people will offer help, and you tend to decline because you think you can handle it early on. And, it is just so much easier to say yes. Say, “Yes. Bring over dinner.” Or, “Yes. I’d love you to come over for two hours while I go out and have a pedicure.” So, yeah. Always say yes when people ask you if they can help, because people want to help.
Dr. Adriana Rossi:
Exactly. And then, it is that group activity, and it’s a shared experience.
Jamie Forward:
Yeah. Okay. So, Marianne asks this question. She says how do the aftereffects of CAR T-cell therapy compare to those of stem cell transplant?
Dr. Adriana Rossi:
Yes. Very different experiences. I think that’s one of my first and loudest messages. Stem cell transplants are really tough. Melphalan (Alkeran) is a very tough drug. The hair loss, the nausea, the weight loss we really do not see with CAR T.
So, we mentioned you have to have your cells collected. You do get some chemo before getting the cells back. But, that’s as far as they are similar. The chemotherapy that you get before CAR T is called lymphodepletion. It only quiets down the T cells. It’s not a rebooting of all of the marrow the way we do with melphalan. And, the side effects are again, mostly driven by inflammation. So, fevers and neurologic deficits. Remembering that the fevers and CRS are expected in about 80 percent of patients. The neurologic side effects are in under 5 percent. So, much more rare. And, it’s usually with transplant, by day 100, if people were working before their transplant, they start to think of going back. With CAR T, I have patients who are 30 days out asking to go back to work, because they’re bored at home. You really just feel better much sooner.
Jamie Forward:
Okay. That sounds like a pretty dramatic difference. And, here’s the last question we have from Debbie. She wants to know does the caregiver need to stay at the hospital room with the patient, or are they only allowed during visiting hours?
Dr. Adriana Rossi:
I think that one is very specific to the center. At Mt. Sinai, we do have specific visiting hours. And, a few exceptions have been made for overnight depending on the specific circumstance. But, most of the time, that is a time the caregiver can go home, and sleep, and be ready at the time of discharge when we really do need them 24 hours.
Jamie Forward:
Okay. That’s good to know. So, it’s center-specific. Great. So, before we end the program, I’d like to get your closing thoughts on the role of the care partner in the CAR T-cell therapy process. What message do you want to leave our care partner audience with?
Dr. Adriana Rossi:
I think mostly to please reach out to us.
We are there not only to take care of the patient, but the global patient experience. So, we are there to support the caregivers, as well. So, please ask questions. Many times, I’ll have had a conversation with a patient many times, and then the caregiver joins later and is hearing everything for the first time. So, please ask questions until everything is clear. And, remember to look after yourself.
Jamie Forward:
That’s great advice. Thank you so much, Dr. Rossi. We appreciate you being here today.
Dr. Adriana Rossi:
Thank you.
Jamie Forward:
And, thank you to all of our collaborators. To access tools to help you become a proactive care partner, visit powerfulpatients.org. Thanks for joining us.
