Being a Caregiver: CAR T-Cell Therapy

This is a recording of the webinar, Being a Caregiver: CAR T-Cell Therapy, that aired on February 1, 2023.

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Being a Caregiver:  CAR T-cell Therapy

Wednesday, February 1, 2023

Presenter: Melanie Fyfe MSN, APRN, AGCNS-BC, BMTCN, Transition Nurse, Moffitt Cancer Center

Presentation is 31 minutes with 25 minutes of Q &A

Many thanks to Kite, a Gilead Company, whose support, in part, made this webinar possible.

Summary: CAR T-cell therapy is a promising new approach for treating certain blood cancers. When undergoing this therapy, patients greatly benefit from having a caregiver who can accompany them throughout the process. This webinar explains CAR T-cell therapy and how caregivers can assist the patent through each stage of the process.


  • CAR T-cell therapy collects a patient’s white blood cells, isolates T-cells, and engineers them to fight cancer cells. The engineered CAR T-cells expand in number and then are infused back into the patient to treat the cancer.
  • Caregivers for CAR T-cell therapy patients can provide a wide variety of support, including posing questions to help the patient understand the process, keeping track of multiple appointments, managing medications, maintain the household, providing transportation, and offering emotional support.
  • Once the patient leaves the hospital, caregivers become the eyes and ears of the medical team monitoring the patient for any changes, side-effects, or new symptoms that must be reported promptly to the medical team.

Key Points:

(05:15): The timeline for CAR T-cell therapy involves an initial consultation; patient work-up; leukapheresis (cell collection); bridging therapy; lymphodepleting chemotherapy; cell infusion; side-effect monitoring; and long-term follow-up.

(09:57): The initial collection of the patient’s cells for CAR T-cell therapy can take up to six hours and is usually done in an outpatient setting.

(11:33): Manufacturing CAR T-cells can take up to six weeks, during which time the patient may receive “bridging therapy” to prevent the cancer from progressing.

(12:39): Patients typically receive” lymphodepleting” chemotherapy to prepare their body for the new CAR T-cells; this is usually done as an outpatient procedure and is well tolerated by most patients.

(14:39):  Caregivers will be given specific instructions about how to avoid exposure at home to chemotherapy the patient received, and how to reduce the patient’s infection risk.

(17:45): Infusion of the CAR T-cells may be done outpatient or in the hospital.

(22:17): CAR t-cell side effects include cytokine release syndrome, which is an inflammatory response to the CAR T-cells attacking cancer cells. Symptoms can include high fevers, low blood pressure and low oxygen levels.

(23:12): There may also be neurological toxicities (called ICANS) that cause confusion, hallucinations, or difficulty walking, speaking or writing.

(27:06): Once the patient is discharged, caregivers will need to monitor the patient at home for side effects, drive the patient to appointments (because the patient will not be permitted to drive for 8 weeks), maintain a clean household, and help the patient manage medications. 

(29:17): To be an effective caregiver, caregivers need to take care of themselves, stay healthy, and ask for help when needed.

Transcript of Presentation:

(00:01): [Susan Stewart] Introduction. Hello and welcome to the workshop Being a Caregiver, CAR T-cell Therapy. My name is Sue Stewart and I'm the founder and the executive director of BMT InfoNet. I'll be your host for this webinar.

(00:16): I'd first like to thank Kite, a Gilead Company whose support helped make this presentation possible.

(00:24): And now, it's my pleasure to introduce to you our speaker this evening, Ms. Melanie Fyfe. Melanie Fyfe is a board-certified Clinical Nurse Specialist who works as a transition nurse at the Moffitt Cancer Center in Tampa, Florida. There she educates, assists, and helps patients and caregivers transition through their cancer journey. She spent the last 10 years in the Blood and Marrow Transplant and Cellular Immunotherapy Department where she was one of the first nurses to administer CAR T-cell therapy during clinical trials.

(01:01): Ms. Fyfe has been instrumental in creating patient and caregiver education materials and she conducts educational classes to help prepare patients and their families for the "ins and outs" of CAR T-cell therapy. Her passion is providing education to both patient and caregivers with the hope of increasing knowledge, providing clarity and setting realistic expectations, with the goal of decreasing stress and anxiety and improving patient outcomes. Please join me in welcoming Melanie Fyfe.

(01:40): [Melanie Fyfe] Overview of Talk. Thank you Sue and thank you BMT InfoNet for this opportunity and thanks to everyone that's joined the webinar today. Whether you're a spouse, a sibling, a daughter or son, a parent, extended family member or friend, being a caregiver during the cancer journey can be intimidating and people often feel lost and don't know how to help or what to do. But educating yourself and knowing what to expect can often decrease anxiety and stress around being a caregiver, along with prepare you to help your loved one through their journey.

(02:17): The goal for today is to discuss being a caregiver for your loved one who is or will be receiving CAR T-cell therapy. First, we're going to go through a brief overview of what CAR T-cell therapy is. Next, we'll review the CAR T-cell therapy timeline. And finally, walk through that timeline of the CAR T-cell therapy journey with what to expect at each step, along with what the caregiver can do at each step.

(02:47): CAR T-cell therapy uses the patient’s own immune system to fight cancer. So, let's start with the basics. As you can see, CAR T is an abbreviation for what we call chimeric antigen receptor T-cell. And it is used as CAR T-cell therapy, which uses the patient's own Immune system to help fight cancer. This is obviously a very small and very broad overview, so I'm going to explain to this ... I'm going to explain this a little bit more and how it works.

(03:20): CAR T-cell therapy collects a patient’s white blood cells, isolates the T-cells, and engineers them to target cancer cells. So, how does it work? What you're seeing here is a quick summary of the process involved with CAR T-cell therapy. First, your loved one will have their white blood cells collected through a process called leukapheresis, or some people call it cell collection.

(03:40): Once those white blood cells are collected, then they are sent to a lab where the T-cells are isolated from the white blood cells and then are activated. These T-cells are then engineered by the lab with what is called a CAR, that we just discussed, that chimeric antigen receptor gene. This gene is what helps the cells recognize target cells such as cancer cells.

(04:11): The engineered T-cells expand in number and then are infused back into the patient. Once the T-cells are engineered with this gene, they then grow and expand the number of these actual CAR T-cells. And then once that's complete, they are sent back to the medical facility and infused into your patient or your loved one.

(04:31): A good way to kind of think about these cells is they're like a GPS. They're for a specific target which includes those cancer cells. That gene's put on there, it helps them find and fight.

(04:42): This process can take anywhere from three to six weeks between when the cells are collected and when they are actually returned to the medical facility. So, I hope this makes a little bit more sense. It's helpful to understand how it works. Just to summarize all these little steps: we take the cells from the patient's body, attach a gene that helps find and attack cancer cells, infuse the cells back into the patient, let the cells go to work, and that sums it up.

(05:15): The timeline for CAR T-cell therapy involves an initial consultation; patient work-up; leukapheresis; bridging therapy; lymphodepleting chemotherapy; cell infusion; side-effect monitoring; and long-term follow-up. Now obviously, that's not all. There's a lot of details kind of surrounding this journey. So, we're going to start with the timeline. What you should see in front of you is a generalized timeframe. Every medical facility can vary a little bit, but this is a generalized timeline of the CAR T-cell journey.

The first step is often consultation, and then workup. After that is leukapheresis, that I just mentioned, where the cells are collected. Then potential bridging therapy.

 Next is lymphodepleting chemotherapy, the cell infusion itself, and then any side effect monitoring. And finally, long-term follow up. It may look like a lot, or it might look like a simple timeline to you, but we're going to go into detail with each step.

(06:09): The consultation with the medical team is the first step. So, first off, consultation. This is usually the first step and the beginning of the journey. It's sometimes what would be considered the first appointment or the first time to even discuss CAR T-cell therapy as an option for your loved one.

(06:26): Next after that is the workup, which is where your loved one is going through a series of tests and or exams prior to treatment to make sure their body is ready for this treatment.

(06:42): During consultation and workup, caregivers can be important partners to help pose and listen to answers so both patient and the caregiver understand the process.  So, what can you expect on these days? As a caregiver, you will be most likely be the one driving and accompanying your loved one to these appointments and meeting with the medical staff. The consultation, like I said, is usually the first initial introduction to this therapy and a good time to ask questions. We all often think about questions beforehand, which can be answered during these meeting times with the CAR T-cell therapy physician and staff. So, writing down these questions before and bringing them with you can [help you] make sure that you don't forget your questions, and that it will help you after you leave the appointment feeling well informed.

(07:26): During these appointments, please don't hesitate to ask the medical staff to repeat things or explain things in more detail for you to fully understand. This is your time to get answers and to prepare for the future in this possible journey.

(07:40): Next there will be multiple appointments in different departments; caregivers should familiarize themselves with the medical facility and be prepared for some long days. After consult, your loved one will likely be scheduled for several different appointments to complete cell collection and then work up for treatment. These appointments can be with different people, different departments, and possibly different locations, depending on the medical facility or where they're receiving this treatment.

(08:01): As a caregiver, it's helpful to familiarize yourself with the medical facility. Drive to the facility the day before so you know the location. Or walk around the facility and find the different departments or locations where the appointments will be beforehand. These are just some ideas that can help you prepare and decrease that stress or that anxiety of getting to the appointment on time or knowing where to go the day of those appointments.

(08:29): Some examples of some of these appointments during workup could be things such as CT scans, EKG, blood work, pulmonary function tests, just different vital organ testing often that needs to be done. But like I said, depending on how these appointments are set up, finding them beforehand can be helpful.

(08:51): You also need to anticipate often spending long days at the medical facilities or different areas. So, it is a good idea to bring a water bottle, maybe a snack that you can keep in a bag or a purse and make sure your cellphone is fully charged if you need it while you're there.

(09:11): Having a caregiver at each of these appointments helps support your loved one. It allows them to have a familiar face when they're going through different testing: someone to help them find those appointments; ask the questions they wanted to ask or remind them about the questions they wanted to ask; and also remember what the doctor said and what the medical team said. All of these things are a lot to hear, and it often takes a team including those caregivers.

(09:39): So, what's up next? After consultation and workup, we come to that cell collection. I've already mentioned this earlier, but cell collection is what's going to happen once the medical team deems your loved one is able to receive CAR T-cell therapy.

(09:57): The initial collection of patient cells for CAR T-cell therapy can take up to six hours and is usually done in an outpatient clinic. Let's go on and learn about leukapheresis or what we call cell collection. This will usually take place in an outpatient setting. Your loved one will not usually be admitted to the hospital for this procedure. As a caregiver, once again, driving and coming with them to this appointment is very important in being there to support them.

(10:19): Just to be prepared, please know these appointments can sometimes take anywhere from four to six hours on average. They may schedule an appointment before the actual cell collection day to assess your loved one's veins, or they may do it the day of. They may decide to place what we call a peripheral or central line, but your medical facility will determine which of those they think is appropriate.

(10:43): Caregivers can provide support, snacks, and activities for the patient during cell collection. During these days, during the cell collection, your loved one will be in either a bed or a chair and will be hooked up to a specialized instrument or machine that separates T-cells from the blood and the remaining blood will be returned to the patient. During this time, patients will often have limited movement, when hooked up to the machine, so they may need assistance.

Obviously medical staff will be there, nursing staff will be there running the machine, being there to get the patient what they need, helping them to the bedside commode, things of that nature. But, obviously, having that familiar face, that supporting calming voice and a caregiver there to grab them something out of their bag or hand them their iPad, things like that. Having stuff to do during this time, little snacks is good for a caregiver to do.

(11:33): Manufacturing CAR T-cells can take up to six weeks during which there may be bridging therapy and other appointments. Once the collection is complete, it can take three to six weeks to manufacture these cells. So, during this time, your loved one might need a few more appointments and they might also need what we call bridging therapy. Bridging therapy is actually considered a treatment for a treatment. This can be chemotherapy, it can be radiation, just to name a few examples, but this can be given between the cell collection and the start of the actual lymphodepleting chemotherapy as mentioned on that timeline.

(12:09): The goal of bridging therapy is to prevent the cancer from growing and spreading while we're waiting on those new CAR T-cells. Not all patients receive bridging therapy or require it, and this will be determined by the medical facility in which they're receiving treatment. It can be given at an authorized treatment center, or it actually could be given, if it's bridging therapy, at a local oncologist's office, depending on what the therapy is.

(12:39): Patients typically then receive lymphodepleting chemotherapy to prepare the body for the new CAR T-cells; this is usually done as an outpatient procedure and the chemotherapy is usually well tolerated by the patient. The next up after that would be our lymphodepleting chemotherapy. This is next in our timeline and it's what each patient who has CAR T-cell therapy will often receive. There are different names of the chemotherapy regimens or the different types that can be given, but the cellular immunotherapy physician will determine what's best for your loved one. This chemotherapy, while it's often required, some clinical trials do not. So, if your loved one is having a clinical trial, there's a potential that they might not utilize it, but the chemotherapy given with CAR T is often well tolerated by patients.

(13:25): Let's talk about the chemotherapy. Usually, this is done outpatient. It's usually done in an outpatient treatment center, and it varies by medical facility. However, this averages about three days before admission. There are different chemotherapy regimens. So, it could be three days, it could be a little longer, just depending, but on average we often see three days. Then there's what we call a rest day and then usually the cell infusion day.

(13:56): The goal of this lymphodepleting chemotherapy is to prepare the body for, what we say sometimes, make room for those new CAR T-cells. As a caregiver, once again, you're driving and coming with them to appointments, but these days can consist of blood work, nursing assessments, vital signs, side effect monitoring, things of that nature.

(14:20):  It’s often important that you're doing some of the monitoring when you leave the hospital. I want to stress that the medical facility where your loved one is receiving treatment will have specific instructions for you on who you can call, when to call, why you would call, things of that nature.

(14:39): Caregivers will receive guidelines about avoiding exposure to chemotherapy at home and infection prevention. But we're going to talk about, also, home chemotherapy precautions and infection prevention. I do want to make sure that before I address both of these topics, that you know that these are general guidelines. These are general guidelines regarding chemotherapy precautions and infection prevention. The medical facility where your loved one is receiving treatment may have more specific or slightly different guidelines for you and your loved one during this time. So please follow the guidelines that they give you.

(15:15): But let's discuss just a quick summary of both, to give you an idea of what could be expected. So, home chemotherapy precautions. A majority of the chemotherapy is given outpatient, so you'll be taking your loved one either home or back to a local lodging or apartment or wherever you're staying.

(15:36): It's important that you [the caregiver] take precautions with all body fluids until five days after the end of the chemotherapy - after the end of the last dose they got. Avoid contact with the patient's body fluids by wearing gloves when handling linens or clothing. If the linen and clothing becomes dirty, we would prefer that you wash these items separately, by themselves, before washing them with other laundry or just keep them both separate, that's great. And to make sure you're washing your hands thoroughly with soap and water after providing any care to your loved one. These are the best ways to protect you from the chemotherapy that you do not need right now.

(16:17): Infection prevention involves avoiding crowds, washing hands, wearing masks, and keeping a clean environment. But also, let's talk about infection prevention. A majority of the time, medical facilities will let you know that infection prevention guidelines should start the day somebody starts receiving chemotherapy. It's very dependent on the type of chemotherapy, but just to be careful with your loved one, we want to make sure that we're avoiding crowds and handshaking, that your loved one is wearing masks in public places and often to those appointments that they go to at the facility.

(16:45): Do not allow anybody sick or anybody that's been exposed to contagious disease around your loved one during this time and, also, try to keep that home clean. Make sure we're dusting, keeping things to a cleaner level, wiping down the surfaces we all use every day, the sink handles the toilet seat, things of that nature. Make sure you're following some food safety tips.

(17:10): Different medical facilities could have different tips and guidelines, but just the basics: cooking things to appropriate temperatures; staying away from buffets, things of that nature. And like I said, follow any infection prevention guidelines from your facility. They will have more specific and more guided instructions for you.

(17:31): Once we've done this chemotherapy, we've had about three days back and forth getting outpatient, taking them home, then the next thing is usually what we call the cell infusion. We've gotten the cells back, it's time to reinfuse them.

(17:45): Infusion of the manufactured  CAR T-cells may be done outpatient or in the hospital. This can be done outpatient, but often, we see that patients are admitted to the hospital or an inpatient cancer center or hospital unit. These days, we often see patients in a hospital bed or a hospital room, but they can be in a bed or chair during the infusion. This infusion, the cells themselves, are infused by the nurse in the patient's room. It usually takes about 15 to 30 minutes to infuse or to complete the actual infusion. It can take longer, but that's on average.

(18:24): Sometimes, patients are given premedication, things like Tylenol or Benadryl, to prevent little reactions, or IV fluids just to keep them hydrated, keep all the organs pumping at that time. The nurse will be there constantly monitoring for possible reactions. If they have itching or hives, [nurses will] be taking their vital signs frequently, checking their heart rate, their temperature, and we obviously talk to the patient and to the caregiver, [telling them] let us know if anything changes, let us know if you have weird feelings and we'll address it as needed.

(18:58): The presence of a caregiver during cell infusion can provide important support and help monitor any new symptoms. As a caregiver, being there by their side is great. Having somebody there that they know, that they're close to, that provides them that friendly support, is obviously always helpful during these situations. And it's totally fine for people to be in the room while the cell infusion is happening. Sometimes a patient will speak with their loved one sooner about how they're feeling than they will with medical staff. Caregivers can be very helpful with letting the nurse know right away if they have new symptoms or things of that nature.

(19:31): Each CAR T-cell patient will receive a wallet card that they need to keep with them at all times. Each patient that receives a commercial product, and when I say commercial, I mean approved products that aren't in a clinical trial, often receive what we call a wallet card. The patient is required to keep this wallet card with them at all times after they receive this treatment. So, for the caregiver, it's important and helpful for you to know what that looks like, and where [the patient] has it and make sure they have it. It is very important that they keep this wallet card, and that any medical care that they receive in the future, they have this card with them and those people in that medical facility are aware that they receive this treatment.

(20:11): After infusion, caregivers continue to be important for monitoring potential side effects from chemotherapy or the new cells themselves. So, we've been through chemo. We got our cell infusion. Now we need to talk about monitoring for side effects and any potential side effects. Side effects can be experienced related to the chemotherapy itself, but there are also specific side effects from the cells themselves. But we're going to first talk about the chemotherapy side effects.

(20:37): Chemotherapy side effects may include infection, bleeding, fatigue, and nausea. Caregivers can provide valuable encouragement and emotional support when patients are not feeling well. A majority of patients tolerate these chemotherapy regimens that are given with CAR T-cell therapy very well. However, there are always potential side effects. As you can see, these side effects can include low red blood cells, low white blood cells, and low platelets. When we start to have those lower counts or those lower cells, that can put the patient at risk for infection and possible bleeding. They could experience fatigue. They could have nausea. They could have vomiting and diarrhea. These are all symptoms associated with receiving chemotherapy.

(21:18): While the medical team is there for symptom management and to help your loved one make it through experiencing any side effects, having a caregiver there to provide patients with support and comfort when they're not feeling well, just listening, communicating, encouraging them, is all very important. Especially encouragement and just communication during a time when they're not feeling well, and they don't even want to talk or maybe they're just too tired, it's very awesome to have a caregiver and a loved one nearby to be able to express their concerns or just know they're there.

(21:54): The majority of what we just went through, those are chemotherapy side effects. Next though, we're going to talk about the actual CAR T-cell potential side effects. These are two common side effects and what you see first is what we call Cytokine Release Syndrome or what is often referred to as CRS.

(22:17): CAR t-cell side effects include cytokine release syndrome which is an inflammatory response to the new cells attacking cancer cells. It can cause high fevers, low blood pressure and low oxygen levels, among other reactions. Cytokine release syndrome is common and often expected. It's when those new cells actually launch an attack on the target cells, or the cancer cells, and they release these proteins called cytokines. The release of these proteins creates, in general terms, an inflammatory response in the body. When this occurs, what you see on the slide are the side effects or the actual ways that we know this is occurring. You can have irregular fast heart rate, low blood pressure, fever, nausea, vomiting, headaches, low oxygen levels. On average, the most commons ones we see are the high fevers, the low blood pressure and low oxygen level. So that is one of the common side effects of the actual T-cells themselves.

(23:12): There may also be neurological toxicities [called ICANS] that can cause confusion, hallucinations, or difficulty walking speaking or writing. The next is what we call neurological toxicities. As you can see under that, they say ICANS. That actually refers to Immune effector Cell Associated Neurotoxicity Syndrome, but we're just going to say neurological toxicities. These can be things such as confusion. They can hallucinate, maybe see things climbing on the wall. There could be difficulty walking, difficulty speaking, reading or writing, extreme sleepiness. They could have facial droop and there is a potential for seizures.

(23:46): These side effects may last several days but most patients improve after that. These neurological toxicities can last for several days and can often be hard for family and friends to see their loved one experience. For most patients, these side effects will improve once treatment is completed, and patients often do not remember even experiencing these side effects.

(24:05): The medical team will monitor these symptoms, but caregivers can be critical in recognizing more subtle signs of neurotoxicity because they know the patient best. Know that your medical team will be monitoring your loved one closely and have specific ways in which they monitor for these specific side effects. That monitoring is right here. Our CRS and our neurotoxicity monitoring consists of monitoring vital signs, which the nurses are doing frequently. They often are checking pupils. They check hand, foot, arm and leg strength. They will check hand coordination.

(24:35): They will ask questions to look for any confusion or difficulty speaking. they'll have the patient, your loved one, perform simple body movements to look for tremors or difficulty walking. They often will have them write a sentence every day, sometimes the same sentence to check for any changes in handwriting. And then they may do any possible additional monitoring if needed.

(24:59): I will say, on average, a common symptom that we see with this, and that caregivers are often helpful in recognizing, is just [the patient being] slow to respond to questions or to a conversation. But that is one thing, just to let you know, that we often see in the beginning.

(25:22): So, as a caregiver, you are extremely valuable in helping staff identify any changes in your loved ones and things that they're experiencing. While this is not required and it's not your job, you often know your loved one better than the medical staff, so you can notice these small changes sometimes and inform the medical team of your changes and concerns.

(25:43): Caregivers should also know who to call if there are problems, keep themselves healthy, and know about valuable resources. If you're outside of the hospital, remember during chemotherapy, just know who to call and when to call when and if you notice something different.

(25:55): Make sure you're keeping yourself healthy as a caregiver. Remember, we can't have any sick people around your loved one.

(26:02): And know your resources. There are plenty of resources out there, but there's also that medical team right there and there are also other caregivers, I'm sure, who want to help and don't know how, that you can ask to help you out.

(26:20): So, we talked about what CAR T is, the next step when it comes to cell collection, chemotherapy, the actual cell infusion, and then those side effects they could experiencing and that monitoring that will be done.

(26:34): So now we've reached a point where what's next? This is when we talk about long-term follow-up and support. So once that treatment is complete and the medical team determines your loved one can either be discharged from the medical facility, whether that's inpatient or outpatient, or maybe doesn't even have to come to appointments as frequently they often require that the patient, with a caregiver, remain close to a medical center for at least four weeks.

(27:06): Once the patient is discharged, caregivers will need to monitor the patient for side effects, drive the patient to appointments, maintain a clean household and help the patient manage medications.  Sometimes, during this time, it's like baby steps. They went through all of this, and they leave the hospital, but they’re still being monitored closely and having appointments. They may need to be readmitted to the hospital during these four weeks, maybe for more tests maybe, if they see any lingering side effects. They want to monitor them for any possible complications. And, also, they may still have that line or that catheter that I mentioned earlier when they leave the hospital that would need to be removed or still used for labs.

(27:37): Patients are also not able to drive a car for at least eight weeks after the cell infusion itself. This is extremely important, especially when it comes to having a caregiver. It is very important that somebody is there to drive them to their appointments, to help them out, whether that's housekeeping, preparing meals, doing their laundry, running errands, making sure that they're on the same page with infection prevention. They often can have a new medication or a list of medications that they need. [It's important to make] sure somebody's helping with them being able to take it and know what they're taking.

(28:15): So, as you can see, being a caregiver is extremely important during each one of the stages in the journey and every one of the steps. And it might seem like little things sometimes, but it is extremely important.

(28:31): There are tons of resources out there. Obviously today, thank you for joining this webinar. BMT InfoNet, you will see up there, is a huge resource for this. There are several other resources out there for support for patients going through CAR T-cell therapy.

(28:52): Caregivers are a vital part of the care team and are the eyes and ears outside the hospital and working with the medical team. Please know, as a caregiver, you play a vital role in your loved one's journey. You are part of the care team. You are the eyes and ears outside of the hospital. Education is the first step in preparing for this journey and you will constantly learn along the way. The medical staff, I know, appreciates you and we all appreciate you and I'm sure that your loved one does too.

(29:17): To do caregiving effectively, caregivers must also take care of themselves, stay healthy, and ask for help when needed. But the one thing I need to remind you of is taking care of yourself. Caregivers often put their loved one and their needs [first] and this pressure on themselves to do it all. We can't do it all and we can't be perfect in going through this journey. Make sure to take time for yourself. You need to do what you need to take care of your mind, body, and soul whether that's meditation, whether that's yoga, some people enjoy music therapy or just breathing exercises, exercising, going for a walk, things of that nature. All those things are good. Take time, clear your head, and stay healthy.

(30:01): It's also good to not overdo your to-do list. Do not add it all on top of yourself. There are people that want to help the caregiver too, and in that turn, helps the patient.

(30:12): Make sure you're communicating with the medical team. If you don't understand, that puts more stress on you too. Let them communicate with you.

(30:19): And find time for joy. While this can be a stressful time, it is still okay to have joy and do things that you find meaningful. And last, but not least, I think I've repeated it a couple times, but ask for help. There are people to help you and l those resources out there. So that is it. That is my webinar. That is my caregiver discussion, and I will turn it over to Sue.

Question and Answer Session:

(30:54): [Susan Stewart]  Thank you, Melanie. That was really an excellent presentation, very thorough. So now we'll begin the question and answer.

(31:09): If you had a stem cell transplant, can they use your stored stem cells for the procedure?

 (31:23): [Melanie Fyfe] That is a really good question, and I actually cannot answer that. That is not something they're currently doing or that I am aware that they're doing, but I don't want to say that that is not possible.

 (31:38): [Susan Stewart]  Are the cells that are collected coming from the patient or from someone who's a compatible donor?

 (31:51): [Melanie Fyfe] That's a great question also. Right now, these CAR T-cells come directly from the patient. And then the patient's actual own cells have the CAR gene added to them. Right now, there's not what we call compatible CAR T-cell infusions. However, there are clinical trials with what we call allos, but that's only in the clinical trial stage at this time.

 (32:21): [Susan Stewart] As a patient with limited family and friends, I live alone. What does a patient do if they have no caregiver, no one to stay with them, no driver, no one to go to appointments? I had all of this during my stem cell transplant, but my options now are very limited If I need CAR T in the future.

 (32:45): [Melanie Fyfe] That's another really great question. And while I do say it's extremely important to have a caregiver during this time, not all medical facilities require that there is a caregiver. But this obviously makes it difficult when you cannot drive for eight weeks, and you need to stay locally. There are often companies that can support you during this time, and often medical facilities have social workers that have helped with other caregiving services if needed. So, I believe there's support out there, but like I said, it depends on the medical facility you're receiving your treatment from.

 (33:23): [Susan Stewart] When do the CAR T-cells actually start working?

 (33:31): [Melanie Fyfe] Very good question, and I don't know if anybody can answer that exact timeframe, but I can give you an idea. So those side effects that I mentioned earlier, with the cytokine release syndrome, some people believe in theory that once we start seeing that, we're actually seeing the cells work. There is no specific timeframe at this time where we say that they're actually working, but I will say between two to three days after they're infused is the theory right now.

 (34:06): [Susan Stewart] What if the patient is allergic to the preservative? I presume the preservative in the CAR T-cells. Will a patient receive Benadryl for an allergic reaction?

 (34:22): [Melanie Fyfe] That can be determined by each medical team. They can administer Benadryl. That's something that often they will do just as a pre-medication anyway. So, Benadryl is definitely an option.

 (34:36): [Susan Stewart] What percentage of patients get cytokine release syndrome? Are females more likely to have organ issues during CRS?

(34:47): [Melanie Fyfe] I cannot give you a specific percentage at this time. I think that would be a good question to ask the physician that's working your loved one up for this treatment. I will say that we do see it. As I mentioned earlier, it is a very common side effect. As for females being more likely to have organ issues, I am not aware of that.

 (35:21): [Susan Stewart] Does CAR T-cell work for all types of cancers or only certain cancers?

 (35:32): [Melanie Fyfe] Great question. So, CAR T-cell, actually, since it started, has come a long way. A majority of it is working on blood disorders: lymphomas, and we also have approvals for multiple myeloma, things of that nature, mostly blood disorders. However, there are several clinical trials right now that are working on different forms of cancer.

 (35:56): [Susan Stewart] How do you manage small kids with an infection after CAR T-cell therapy? What extra precautions should we take?

 (36:09): [Melanie Fyfe] That's pretty specific when it comes to the counts of the patients. So, as I mentioned in the slides earlier, we talked about how chemotherapy is more of what could decrease their white blood cell count or could put them at risk of more infection. So, we would have to see how their counts are coming up if they're starting to have higher counts in a normal range.

(36:35): Now, when it comes to small children. One of the main concerns when we think of infection prevention is we think of live vaccinations. So, children are a young age where they're still having all their vaccines. It is often recommended that patients who are immunocompromised or neutropenic, if their counts, their white blood cell counts are low, stay away from those live vaccines or people that have had them within the past two weeks.

 (37:07): [Susan Stewart] How many months after CAR T will there be a risk of complications and how much time should I take on for family and medical leave? How much time is usually required?

 (37:25): [Melanie Fyfe] So, we often say that you're required to stay four weeks locally or close to a medical facility. The studies have shown that when it comes to side effects, whether that's CRS or neurological toxicities, everybody varies, it's very different, so it's hard to give you a specific timeframe. But I will say between the four weeks of minimum that is required, 30 days post the cell infusion, we can still see a lot of side effects. There can be long-term complications, but it everybody's very different.

(38:05): As for a specific timeframe to take off FMLA, I think it would be a good idea for your specific physician and medical facility to let you know that because depending on your workup and your appointments prior to receiving the therapy, that would be a different timeframe than when you actually get the cells themselves, but on average a minimum of four weeks.

 (38:32): [Susan Stewart] Can you be around animals in your home after CAR T-cell therapy, assuming the caregiver would be taking care of them?

 (38:42): [Melanie Fyfe] Yes, you can be around animals, and I do agree that having the caregiver take care of them is ideal. We do often think of infection prevention when it comes to animals. So doing anything like cleaning litter boxes or fish tanks, things of that nature, I would probably avoid for a while. If your pets are aggressive, if they scratch you or bite you, we might want you to stay away from them, but there's no current limitations, more just being cautious and safe practices.

 (39:13): [Susan Stewart] Is there's any age limit on being a caregiver?

 (39:21): [Melanie Fyfe] I have not heard of an age limit. Now, that could be different at different medical facilities, but at this time, I do not believe so.

(39:32): [Susan Stewart] Please elaborate on keeping the home clean and interaction with pets. Could you be a little more specific about the kinds of things you recommend to keep the home clean?

(39:47): [Melanie Fyfe] Yeah, of course. Again, the recommendations are just what we said, recommendations, and it's just to keep minimal dust, things of that nature. So dusting with a damp cloth so that we're not knocking a whole bunch of things up in the air; wiping off the eating area and the bathroom daily, the areas that we all use the most, whether that's the sink handles, the toilet handle, the shower handles, things of that nature. I think cleaning those once a day is ideal. Maybe washing the sheets frequently maybe once a week, mopping once a week, nothing extreme, but just generalized keeping the dust, bacteria down. I hope that's a good answer for that.

 (40:37): [Susan Stewart] Where can I find information about clinical trials with CAR T-cells for liver cancer?

 (40:50): [Melanie Fyfe] Very good question because there are trials for CAR T and liver that I've seen recently. So I do recommend right now, I just pulled up the resources slide I hope you can see. Several of these areas are ideal to look at and often if you look at some of the commercial products, or what we call the FDA approved CAR T products, those websites can have links to clinical trials also. I don't have any specific to give you right now, but those can be helpful in finding links to actual clinical trials.

(41:32): [Susan Stewart] Is revaccination of childhood vaccines is recommended sometimes after CAR T?

 (41:45): [Melanie Fyfe] At this time, I'm not aware of any revaccinations similar to after transplant, I get what you're saying, mainly because this chemotherapy does not do the same as what it does for transplant. But that's a great question, but not at this time.

 (42:03): [Susan Stewart] If my white blood count is low, can they still do the cell collection?

 (42:15): [Melanie Fyfe] Yes, that's a great question. I'm not sure what their specific number is at this time, but I believe so, yes.

 (42:26): [Susan Stewart] Can you get an FDA-approved CAR T-cell therapy anywhere or do you need to go to specific centers?

(42:40): [Melanie Fyfe] Right now, I don't believe that it's everywhere that you could receive an FDA approved CAR T-cell therapy. Right now, it is specific centers that would provide that treatment. It doesn't mean it has to be a cancer center, but most cancer centers are the only ones that provide that treatment at this time. There are some public hospitals that do have cancer centers within them that would also treat it, but it's not widespread at this time, so you can't just get it anywhere.

 (43:14): [Susan Stewart] How do we find financial resources for this treatment?

(43:24): [Melanie Fyfe] Also, a very good question. So, the resources that were provided earlier, those are also, they have different grants, they have different things provided for these type of services. There's also, I believe you can apply for specific grants with the different companies that create the FDA approved products. But I recommend the resources listed online. Your local social worker or case manager would also be very helpful and very knowledgeable in giving you where, specifically, to go and what is available out there for financial resources.

 (44:09): [Susan Stewart] And I will add that BMT InfoNet does have a patient assistance fund that is set up for CAR T-cell recipients. So if you have questions about that, you can either call the office at 888-597-7674 or you can email us at and we'll be glad to provide that information.

(44:36):  Are CAR T patients at a higher risk for infections and should they be masking for a certain period of time?

 (44:46): [Melanie Fyfe] They can be at a higher risk for infection depending on their counts at different times during the treatment. We do ask that they mask when they're out in public during treatment and for approximately four weeks post cell infusion.

 (45:03): [Susan Stewart] Why can't patients drive after CAR T-cell therapies for several weeks? What's the rationale?

 (45:15): [Melanie Fyfe] I'm asked that a lot. But it's the fact that side effects, that can still happen, depending on what they're going through. But a lot of this is regulations that have been set forth by the companies that produce the product.

 (45:35): [Susan Stewart] Does the mental confusion that CAR T-cell patients get after transplant completely resolve or does it ever come back?

 (45:49): [Melanie Fyfe] So, on average, what we're seeing is that a majority of the neurological toxicities, whether that's difficulty speaking or confusion, often resolve. I don't have a specific percentage, but we often see it resolved in that patients don't even remember experiencing it.

(46:06): Now, there are rare cases, and I do say very rare cases, that there could be longer term issues, but at this time, that has not been seen frequently. It has been very minimal and very rare that it would be long term. These are usually resolved in the month, within the month after the cell infusion.

(46:30): [Susan Stewart] There's a thing called chemobrain that you get after chemotherapy. Is there CAR T-brain like chemobrain?

 (46:46): [Melanie Fyfe] There isn't anything called CAR T brain at this time. I can see that sometimes one of the first symptoms and sometimes the only symptom we see is slowness to respond. And sometimes that can seem to last longer than the first week, but it's not something that is long-term and I think chemobrain is a little bit different.

(47:15): [Susan Stewart] How soon can I expect the patient to be strong enough to do routine household chores and work or full- or part-time?'

 (47:24): [Melanie Fyfe] The timing thing is always a question and it's hard for me to give specifics there. And the fact that everybody's journey through this is quite different and knowing when they'll be to that point is hard to know. But I would say a minimum, remember, we start with that 30 days and I would say a minimum of 30 days after they cell infusion. But sometimes I tell people up to three months, but it's very patient specific on what side effect they experience and what they have to come back from and when that is approved. And medical facilities have different beliefs on when they think that their patient is ready, but not at least for four weeks, sometimes up to eight weeks.

 (48:17): [Susan Stewart] Does insurance typically covers all the cost associated with CAR T-cell therapy, and if not, if the patient has to pay for it, what kind of money are we talking about?

(48:33): [Melanie Fyfe] I unfortunately cannot answer that question. Insurance and what it costs are really not my expertise. So, I would say a good way to find some of this out is the local medical facilities, the case managers or social workers often have a lot of that information, but I apologize, that is just not something I can answer.

(49:02): [Susan Stewart] Is the chemo that the patients get prior to CAR T-cell therapy strong enough that it causes the patient to lose their hair?

 (49:16): [Melanie Fyfe:] Good question. I do not see hair loss as a frequent side effect of the chemotherapy with CAR T-cell therapy regimen. So no, I do not often see hair loss with this.

 (49:30): [Susan Stewart] We live in a rural area. If something comes up and my husband has to go to the emergency room, is there anything I need to tell the ER doctors regarding his CAR T-cell therapy?

 (49:43): [Melanie Fyfe] That's a great question, and that takes me back to what we talked about earlier. The day of cell infusion, often it is an FDA approved product, your husband should receive what we call a wallet card. And that wallet card has the actual description of the treatment that he's received and usually has the number and the name of that physician that gave him that treatment. That card should stay with him at all times. So, if you end up in an ER, yes, it's important to know where that wallet card is, that he has it with him and that you show it to the medical team providing care to him.

 (50:23): [Susan Stewart] Do we need to wear masks both indoors and out and outdoors and, if so, for how long?

(50:35): [Melanie Fyfe] So each medical facility has different specific guidelines surrounding that. So, although I will give you a generalized guideline, please follow the medical facility's specific instructions. We often say it's mainly in public places when you're around crowds, things of that nature. So, coming into medical facilities where there's maybe a lot of sick people, yes, wearing masks when you go to the grocery store, yes, wearing masks in public.

(51:01): If you want to go for a walk outside, there's not a lot of people around, you don't always have to wear a mask. Those guidelines are usually what we provide to our caregivers, but medical facilities may have different guidelines, so please follow whatever it is that they say in regards to masking.

 (51:20): [Susan Stewart] Does CAR T-cell therapy cure cancer in all cases? And if not, what is the success rate of CAR T?

 (51:37): [Melanie Fyfe] So, this is a very good question and often very hard to answer. I don't have the specific statistics with me. I will say that when it comes to curing, I don't have those numbers. I do know that physicians are much better able to answer that question than me, and even though I'd love to provide an answer to that question, I definitely think it's better for that to be asked of a cell therapy physician.

 (52:12): [Susan Stewart] Is there a certain point where you know that CAR T-cell therapy works and the patient is definitely cured?

 (52:24): [Melanie Fyfe] Yeah, that's something that I don't necessarily think I can answer today. I do know there's theories out there when people believe it's working and that's when you see the CRS happening. The side effects or the neurological toxicities, mainly the CRS. Some people theorize that that could be the cells working, but that's not specific and exact at this time.

 (52:51): [Susan Stewart] Can the patient do cooking on their own after CAR T-cell therapy?

 (53:06): [Melanie Fyfe] Yeah, I believe that's possible. We just want them to be extra safe and if they're having any side effects of neurological toxicities or any confusion, that we're being extremely safe in the kitchen.

 (53:22): [Susan Stewart] Is it okay to have family members and friends visit them while their spouse is recovering from CAR T-cell therapy?

 (53:33): [Melanie Fyfe] I think that's often okay for people to visit. One of the things I mentioned in today's webinar and that I think it's extremely important is that there's nobody sick or nobody that has been exposed to anybody with contagious disease coming to visit your loved one, to be on the safe side.

(53:51):  So, for example, say a friend of yours said, "Everybody in the house has had the flu all week, but I'm good. I'm going to come say hi." Well, not a great idea. They've been exposed to contagious disease, so probably shouldn't come around. And obviously, like I mentioned, no big crowds. So a couple people at a time is great, but you don't want a big room full of people during this time.

(54:17): [Susan Stewart] Would planning for three months of dedicated caregiving be sufficient in most cases? Are patients going to typically need care after three months?

 (54:35): [Melanie Fyfe] I think three months sounds like a very reasonable timeframe. Often it's hard to give that specific, as I said earlier, because everybody's journey is very different, but three months is definitely, I would consider adequate. And it also might depend on each step and what they're experiencing. So that's sometimes hard, but I think that sounds adequate.

 (55:06): [Susan Stewart] Are there any late or long-term side effects of CAR T-cell therapy that we should be watching for?

 (55:18): [Melanie Fyfe] So, we kind of talked about this a little bit earlier, and when it comes to the rareness of long-term side effects. There are very rarely long-term side effects at this time, and there's still a lot of research being done on the long-term effects of this because this therapy hasn't been out for tens of years. There's still a lot of research going on with this. But there have been a couple cases of maybe tremors. We did mention some neurological toxicities, but nothing else that I'm aware of at this time.

(55:53): [Susan Stewart] If the patient's doing okay, can they shop at the grocery store?

(56:02): [Melanie Fyfe] I think that's totally fine. I'd prefer them to have a mask if they're in the grocery store, especially if it's a busy time of day, and that they're just being careful when it's busy. Taking their time walking and maybe having someone with them would be ideal.

 (56:22): [Susan Stewart]  Closing. Well, thank you. Our time has run out this evening and it's been really an informative hour. I want to thank Ms. Fyfe for a very enlightening presentation. And I also wanted to thank the audience for some terrific questions that really brought to life that I think everybody wanted answers to.




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