Myeloma CAR T-Cell Therapy: Advice for Preparing, Coping, and Thriving

Katherine Banwell:

Hello and welcome. I’m Katherine Banwell. Today’s program is part of the Patient Empowerment Network’s Thrive series focusing on information and support for people undergoing CAR T-cell therapy for myeloma. We’ll hear directly from a myeloma specialist.

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. Let’s meet our guest today. Joining us is Dr. Beth Faiman. Dr. Faiman, welcome. Would you please introduce yourself?

Beth Faiman:

Of course. Thank you so much for having me today. My name is Beth Faiman. I am a nurse practitioner at the Cleveland Clinic in Cleveland, Ohio, and I have over 30 years of experience in diagnosing and managing myeloma patients. So, thank you so much for letting me share my opinions today.

Katherine Banwell:

Well, we’re so glad to have you with us. Last time you joined us, we discussed what it meant to thrive with myeloma. Can you talk about how the management of myeloma has changed in the last couple of years with the addition of CAR T-cell therapy as an option?

Beth Faiman:

Yeah. Absolutely. So, the management of myeloma patients in relation to CAR T-cell therapy has really changed in the last few years since the approvals in 2022 and 2023 respectively of CAR T-cell therapy. Now, we have advanced information of clinical trials that show four drugs up front such as an anti-CD38 monoclonal antibody, immunotherapy drugs, proteasome inhibitors, and steroids will produce deep responses.

But now, CAR T-cell therapy’s being introduced earlier in the treatment paradigm.

Unfortunately, though, about 20 percent of patients who are eligible for CAR T-cell therapy only receive the CAR T-cell therapy. So, we’ll be talking more about that treatment today, and maybe it’ll provide some insights into how you can recommend to your friends and family and heighten awareness of the importance of this therapy.

Katherine Banwell:

Absolutely. We all know that knowledge is power, right? So, knowing what to expect can help patients feel more empowered. Let’s start by understanding the timeline for CAR T. Would you provide an overview of the process?

Beth Faiman:

Oh, absolutely. So, CAR T-cell therapy or Chimeric Antigen Receptor T-cell therapy, CAR T therapy, is a specialized therapy for patients with multiple myeloma and other blood cancers that programs your own healthy T cells to become fighters in the blood stream. Again, it’s a type of immunotherapy using your own cells, so, we’re engineering these to be fighters.

The blood is collected like you’re donating blood from a catheter through a process called apheresis, and the cells are multiplied in the lab and grown. But this is a long process, and it starts with a referral to a CAR T-cell center.

We used to give this treatment after four or five prior lines of therapy. Now, we have clinical studies that are showing that it might be effective in early, newly diagnosed patients. So, the things to remember and share with your friends and your friends’ friends and support groups and whoever you speak with is an early referral is important because it starts with meeting the CAR T-cell center.

And then, we check and discuss through shared decision-making, “Is this therapy right for you,” discussing the risks and benefits and alternatives.

And then, we get the financial clearance. And then, we talk to your insurance company and make sure all is approved. We have physical, financial, and other screenings. And then, we go to harvest your T cells once it has been an approved process through your insurance, and you decide to proceed.

Then, there’s this period of about six to eight weeks, sometimes as low as four weeks, to manufacture those cells before they’re given back to the person. So, this is a lengthy process. And again, we don’t want you to be pressured to make this decision. And it’s important to meet with a team and establish trust and find out if this is right for you early on so that you can get this therapy that might be right for you sooner than later.

Katherine Banwell:

Yeah. Let’s discuss how CAR T has changed for patients in the last couple of years. You touched on it a moment ago. It’s starting with the earlier use of this therapy. When does the therapy fit into a myeloma treatment plan now?

Beth Faiman:

So, this is such an interesting question, and I appreciate you asking it because that is the biggest thing that has stuck out for me. There are a few features of CAR T-cell therapy in myeloma, and that’s really the big one is the earlier utilization. There was a study called CARTITUDE-4 that showed that when patients received earlier aligned CAR T-cell therapy, we now know that one in five patients are still in a really deep remission and not progressing.

And so, because of the earlier utilization that was found to be supported in the study, you can have it as early as one prior line of therapy. So, let’s say you got that four-drug induction at diagnosis, maybe you had a transplant, maybe you didn’t, you would be a CAR T-cell therapy candidate for one of these medications. So, this therapy is rapidly moving to the second- and third-line therapy and even before. We now know also that there’s improved sequencing. Through research because this is a target of what’s called B-cell maturation antigen or BCMA, we program the CAR T cells to fight BCMA and work with the T cells.

We try to avoid BCMA bispecific antibody which is a different type of injection therapy that we give regularly to patients with myeloma because CAR T-cell therapy could be less effective over time. And then finally, the most important thing that most of my patients – and I’ve had hundreds of patients go through this procedure – most important thing patients tell me is that you can’t put a price on being off of therapy.

You don’t have to take any medications or pills or shots. Maybe some things to improve your immune system and prevent infection such as antibiotics or antivirals, but you’re not taking chemotherapy daily or weekly. And so, that is priceless. So, not only are we moving this therapy earlier, we have a better knowledge of how to sequence the therapy, and we’re recognizing the benefits that the patients are experiencing.

Katherine Banwell:

Dr. Faiman, how do you know which myeloma patient CAR T-cell therapy is right for? I mean, can you really predict who will thrive with this therapy?

Beth Faiman:

Well, that’s an excellent question. You have so many great questions today, and that’s an excellent question, too, because what we’re finding is that, really, age is just a number. And I mention that because whenever we decide what therapy might be best for a person, we think of, “What’s their physical, financial, social situation? What are their needs, their desires, their goals?”

Some people want to go for a cure, and they want to do a more aggressive therapy. And we talk about the tradeoffs. Short term with CAR T, there’s that two, three, four process of screening, financial clearance, needing a caregiver. But then, when you’re finished, then we can just surveil you and watch you closely to make sure that you’re progressing or having any problems with infections or other complications, and we’ll talk about that a little bit more later. But when we’re personalizing therapy, it’s really anybody is a candidate.

I mentioned the statistics earlier that only 20 percent of patients around the country in the United States are getting the CAR T-cell therapy which is potentially curative for a lot of people. So, again, we just trying to talk about what’s best for that patient. But really, anybody after one prior line of therapy should be considered for this innovative therapy.

Katherine Banwell:

Yeah. What about safety? What has changed in regards to risk of potential side effects from CAR T?

Beth Faiman:

Yeah, so, from the earlier 2010s when we starting using clinical trials with CAR T-cell therapy, we had a very well-described side effect profile. Three main things I think of and tell patients. Number one, cytokine release syndrome where we’re stimulating your T cells to be fighters. So, it’s like getting a bad fever. And I compare it to if you get a flu shot or an immunization. Your body is building up immunity. And so, you will sometimes have a fever, but this can be way worse. So, that CRS can be very worrisome. And so, we sometimes bring people into the hospital for that, and we’ll talk about that probably in a few moments.

Neurotoxicity or ICANS, again, it’s called immune cell affecter associated neurotoxicity syndrome. People might have maybe a mild headache, but it could be more severe such as confusion. We know now to give drugs such as dexamethasone to stop that process and turn that off to reverse some of these effects.

And then finally, infection. We know infection because we’re ablating and getting rid of the B cells which are supposed to protect us from getting sick. We know through giving drugs such as intravenous immunoglobulin or IVIG can protect people against serious infections. We now know that everybody should take a medication such as sulfamethoxazole/trimethoprim (Bactrim) to prevent a rare type of pneumonia that some immunocompromised patients get. And we know that we should give you re-vaccines. So, revaccinating like after a stem cell transplant is important. So, again, the CRS, ICANS, and infection are the top three things we worry about.

And we have better knowledge of how to prevent and mitigate those side effects. And that’s what is now recommended through national guidelines.

Katherine Banwell:

I’d like to drill down a bit deeper. What steps can patients take to feel more prepared and confident going into CAR T?

Beth Faiman:

Patients hear about CAR T-cell therapy. I get referrals to my institution because they’ve heard somebody went through it, and they were “cured” meaning they haven’t had any active treatment for five years. But many patients still don’t fully understand what needs to be done and what they might go through. And so, having the conversation with the patient and a care partner and the physician and the nurse and the whole healthcare team so that they can fully understand what the risks, benefits, and alternatives to treatment are and make that informed decision. Because as you mentioned before, knowledge is power. Sometimes it can be scary.

And some people say, “Just tell me what the right treatment is, and I’ll take it.” And I say to them, “I appreciate that as a healthcare provider, but I still want to hear from you, and I want you to understand what you’re going through so you can’t be surprised.” So, by being performed and opening the lines of communication with the patient and the healthcare team I think is the best thing that a patient can do.

Katherine Banwell:

Well, in your experience, what do patients often underestimate about the process?

Beth Faiman:

So, the time can be underestimated. So, a lot of times people will see the schedule, and I have an appointment here for a bone marrow biopsy before the procedure. I have an appointment here for maybe this outpatient infusion or lab test. But, again, until you’re deep in the throes of the procedure, you sometimes will underestimate the amount of time. And also, care partner support. We talk about care partners all the time. Not everybody has a dedicated care partner or caregiver. It depends on what term you want to use.

So, sometimes we have to assemble a rotating team of friends, family, places of worship, anywhere we can find to help support the patient through the CAR T-cell process. So, again, not really understanding the length of time, but, again, the trade off at the end is this treatment-free interval where you don’t have to go to the infusion center on a daily or weekly or monthly basis even.

You have a lot more time back to yourself. And you generally feel better off of ongoing therapy.

Katherine Banwell:

Are there any misconceptions about the process that people might have?

Beth Faiman:

Yeah. Absolutely. So, in terms of the misconceptions that I think, I think of them as myths. And the first one is that CAR T-cell therapy is a last resort. We thought that for years about stem cell transplant until that moved up earlier lines for myeloma. But, in fact, CAR T-cell therapy can be used earlier on in the disease trajectory as we talked about before.

You only need one prior line of therapy to qualify for a CAR T-cell therapy. Another myth I think needs to be dispelled is that it requires a long hospital stay. So, in the earlier stages of CAR T, we used to have patients hospitalized for two or three weeks at a time, and nobody wants to stay in the hospital for two or three weeks at a time.

Most places like my institution have either a hybrid model or an all-outpatient CAR T model which means you start getting some preparative medication called lymphodepletion chemotherapy right before you get your CAR T cells back. That can be all outpatient for five days. Then, you get your CAR T cells back on what we call day zero. And then, for days zero to five, you hang out at home. You have daily blood draws perhaps and see a nurse practitioner or a physician to make sure you’re not having any problems. And then, you get admitted to the hospital for usually only about four days.

When you get that CRS, that cytokine release syndrome risk, about 70-some percent of patients depending on the clinical studies will get that which is just really a high fever. But once we jump in and give medication to turn that process off, then patients won’t have a fever or chills. That will typically go away in a majority of folks. So, we want you in the hospital for that for many people. So, that myth number two, I think, is a big one.

And then finally, the third myth that I think is really important, I think of things in threes, is that it’s the same as a stem-cell transplant. It’s not. Similarities are that we use an apheresis process to collect your healthy T cells, but stem cell transplant we collect your stem cells. And then, for CAR T-cell therapy, we’re programming them to be fighters. So, it’s a living drug that circulates through your system. In stem cell transplant, we’re not programming anything. We just give you a high dose of chemotherapy called melphalan to wipe out your bone marrow.

Then we have to rescue your bone marrow with stem cells. So, the recovery for stem cell transplant is a lot longer than the recovery with CAR T-cell therapy because we’re not giving you such as intense therapies. So, it’s a much gentler procedure. That’s why age is just a number, and many more people are candidates for CAR T-cell therapy than actually stem cell transplant therapy. And you don’t have to have had a stem cell transplant to qualify for CAR T.

Katherine Banwell:

That’s great information, Dr. Faiman. When we talk about thriving during CAR T, not just getting through it, what does that mean to you as a clinician as well as for patients?

Beth Faiman:

Yeah. So, I might be sounding like a broken record, but for me, I think communication is key. Having that strong line of communication and trusting your healthcare team. And it might not be the doctor or the nurse practitioner or physician assistant that you regularly see, that provider. It might not be the person you feel most comfortable communicating with. It might be your nurse coordinator or your pharmacist or a social worker. So, whoever you can find to build trust with and share the side effects, share your financial worries, share your physical woes so that we can address them and intervene in them is so important.

And so, from being a provider, when I help my patients thrive and thriving myself, it’s really feeling comfortable. It’s the best compliment I can get when the patients say, “I feel like I can tell you anything.” And I want them to be able to tell me anything so that I can help them through this process.

Katherine Banwell:

Yeah. Absolutely. In your experience, where in the CAR-T cell therapy journey do patients tend to struggle the most, and where do you see them do especially well?

Beth Faiman:

Yeah. So, the struggling part, as you would expect, is during the whole process. I shared with you at the very beginning the long timeline from meeting the transplant CAR T-cell cellular therapy center specialist to the financial and physical clearance of the procedure. That part can be a little nerve wracking because you worry if you’re making the right decision. I can’t tell you how many people come to me after we’ve talked about it and say, “Beth, did I make the right decision?” And I say, “The right decision is the one that you feel comfortable making.” So, yes, there’s a worry there.

But the patients struggle more so during that period of when we give you the lymphodepletion chemotherapy which is several days of treatment to open up space for the CAR T cells to expand, and then when you’re waiting after they’ve been reinfused.

‘Cause you don’t know how high your fever’s going to go. You don’t know if you’re going to have any neurotoxicity. And then, you worry about the long-term side effects that might be rare such as Parkinson’s-types of side effects. But you worry that that could happen. So, that’s that first month of therapy and particularly during the acute phase which is the first 14 days after that day zero to day 14 that we worry about. But definitely until day 30, we still ask that the care partner be around. We ask that they stay close to proximity.

Fortunately, many of the pharmaceutical companies, and there are many different programs that provide grants to patients to offset the expenses.

And that’s what a lot of people are worried about. “I can’t afford to stay in Cleveland for a month.” But we do the best we can to find resources to help them be supported during that time so that they can stay safe within a close proximity of the treatment center but still be able to get the therapy that they deserve.

Katherine Banwell:

Yeah. You’ve mentioned the waiting period between cell collection and the infusion of CAR T cells. How should patients and care partners plan for this time?

Beth Faiman:

Yeah. And that’s another excellent question because it’s different for everybody. So, in general, when patients have myeloma, and they need CAR T-cell therapy, that means that their disease might not be well-controlled. So, in contrast to stem cell transplant when at the beginning we give four drugs induction at newly diagnosed, and then, after four to six months we have a planned stem cell transplant when that patient’s in remission, it’s different for CAR T because it means that they might have been relapsing from that prior therapy.

So, after we collect the CAR T cells, those T cells and make them into CARs, then we have what’s called a bridging therapy period. And that bridging therapy might be different depending on what the patient received before, what are their comorbid or other health illnesses, and what the goals of therapy are. Oftentimes, many centers are giving a drug called talquetamab-tgvs (Talvey), which is a bispecific antibody during that bridge because there have been studies that show that that might be effective, after they harvest the T cells, might be very effective to control the disease.

And the better disease control we have going into CAR T-cell therapy will hopefully cause less risk of CRS, less risk for bad outcomes. And so, again, that will look a little bit different for each patient. But really, it’s a waiting period, and you kinda go about your business. Some people, I will say, though, want to take a vacation before their CAR T-cell therapy or a weekend trip, and that’s okay, too. But talk with your healthcare provider about what’s right for you and what you’d like to do, and hopefully they’ll be able to support you through that.

Katherine Banwell:

While the healthcare team is a key part of care, support at home is just as important. What does a strong home support system look like for someone undergoing CAR T?

Beth Faiman:

A strong home healthcare support system looks different for everybody. Some people want to have a care partner or caregiver all the time, somebody that’s there. But other people are pretty independent. I’ve had the good fortune of meeting a number of patients that have gone through CAR T-cell therapy, and everybody has different desires. So, while you might not have a spouse or a significant other living under the same roof, you might find comfort in having somebody come regularly to visit you. The best thing you can do is find somebody or assemble a team of those care partners, caregivers, that are willing to be the eyes and the ears of the healthcare provider during the actual CAR T process time.

That’s within that 30 days from where you get your CAR T cells back to about 30 days after. And so, that can look different for everybody. But it might be bringing in meals from family and friends or it might be somebody that stays overnight to make sure that they’re safe. So, again, it looks different for everybody, but it’s just having a team of people that care about you and that you care about to help support you through that process.

Katherine Banwell:

While we’re talking about care partners, I want to let our audience know that the Patient Empowerment Network has a number of resources for care partners. You can find them at powerfulpatients.org or by scanning the QR code on your screen.

Well, Dr. Faiman, let’s get into monitoring after CAR T. What are the most common early side effects, and what do they actually feel like for patients?

Beth Faiman:

Yes. The most common side effects I described briefly early on. Number one, the CRS or cytokine release syndrome. That occurs when our programmed cells are reinfused into the body. And about day seven after that reinfusion is when patients are at the highest risk for a high fever. And that’s a sign that these cells are doing their job. The CARs are expanding in one’s bloodstream, and they’re being programmed to be fighters, to circle around in the bloodstream like a living drug.

So, that high fever can occur, but we have a drug called tocilizumab (Actemra) which we administer to turn off that process. It’s what’s called an anti-IL6 drug, and it blocks that chemical that triggers that immune response.

It doesn’t negatively affect the CAR T cells or limit your ability to react to it. The second thing is the neurotoxicity. It can start as a little bit of a headache. The nurses and doctors if you’re in the hospital or as an outpatient will ask you regularly, “Count back from 100 by 10. Where are you at? What’s your name?” and ask you to do a handwriting sample among other things.

And so, that will let us know if you’re having any signs of this neurotoxicity. If so, we give you steroids called dexamethasone (Decadron) to turn that process off. And then finally, things that should be monitored as well would be for infection. Signs of infection as you can imagine would be a high fever and chills which look like that CRS as well. So, in parallel, we’re going to make sure that the individual doesn’t have an infection, and we’re going to make sure that the patient’s CRS is what we think it is if the time is right as addressed.

And so, if you have an outpatient CAR T with a strong support, somebody that’s there 24 hours a day, seven days a week to support that patient, you can get an outpatient CAR T successfully delivered. But we want those individuals to be our eyes and ears for the healthcare providers and report promptly. And more communication, and I already talked about how important communication is, but we can’t intervene on a problem if we don’t know that one is having one.

Katherine Banwell:

Exactly. Yeah. So, you’re saying there are definitely some symptoms that should not be ignored. How can early reporting of side effects improve outcomes?

Beth Faiman:

Yes. So, a little bit of a fever, maybe 100.4, some patients will say, “I’m just going to go back to sleep. I’ll be fine.” But if we know you have that fever or we instruct you to take two Tylenol and maybe some dexamethasone if we think it’s this cytokine release syndrome starting, if we know how to intervene and intervene quickly and have that open line of communication, it can prevent it from getting more severe.

There are more severe signs of that CRS. Most people have mild these days especially with better disease control, giving these therapies earlier on, and better supportive care. But if we don’t treat that CRS, then it can lead to low blood pressure or hypotension. And you can require oxygen in severe stages.

So, again, let your healthcare team know if you’re having any side effects of treatment. I do want to address something that we’ve been more aware of lately in the myeloma community is that there is this late side effect that mimics Parkinsonism. And it happens after day 30. And it might start as a mild tremor.

And people will say, “Oh, it’s nothing. I’m just more tired.” But we need to know if you’re having any of these rare side effects because, again, we can give you medications and hopefully intervene before they become worse.

So, talking to your healthcare team, finding a team that you feel comfortable and confident with I think is a recipe for success when you’re considering CAR T-cell therapy.

Katherine Banwell:

Yeah. Could you talk about recovery in the first few weeks and months after CAR T? How can patients protect themselves while their immune is still rebuilding? It’s a delicate time.

Beth Faiman:

Yes. Yes. So, it’s different than a stem cell transplant where we wiped out all your healthy cells, and then, we have to wait for them to grow back. But the B cells which, again, are meant to protect you from getting sick, we’ve pretty much wiped those out temporarily. So, there are different periods. In the Infectious Disease Society of America and the Transplant and Cellular Therapy Centers, TCT and IDSA, have guidelines for how we can protect you. So, number one, good handwashing. We’ve learned that in kindergarten.

And so, good handwashing is really important and avoiding people with colds. We’ve gotten away a lot of times from masking although some people still feel very comfortable masking. I still think physical distance is just as important in trying to minimize contact with people that you don’t need to have contact with. So, again, avoiding crowds, avoiding people with colds, and good handwashing. The second thing is to try to make sure you understand what supportive care medications your providers are recommending.

Acyclovir to prevent shingles, we have antibiotics to prevent rare pneumonias, and then, we have a drug called intravenous immunoglobulin or IVIG that everybody with myeloma that receives BCMA CAR T should be taking on a monthly basis. We know that the critical periods are within the first six months, and then, it’s kind of like the yellow cautionary periods from six months to a year. So, just being aware of your individual risk and making sure you’re getting your labs monitored is super important.

Katherine Banwell:

What are some positive signs that recovery is on track?

Beth Faiman:

The number one is how people feel. And I always like to say I treat people not numbers. And if your numbers might not look great, but you’re feeling great, then that’s okay with me, and it’s very important. So, the very number one thing I see is that people feel better. They’re less tired. They’re sleeping better. I always try to encourage people to try to keep a good diet with lots of fruits and vegetables. We have research that supports the high-fiber plant-based diet might be beneficial for many people with cancer including myeloma. But try to get a good diet, seven to nine hours of sleep at night, and light exercise.

Take a walk around the block with a care partner or a friend or just yourself. And so, those types of strategies of “healthy living” can be mentally positive for individuals as well as physically positive in keeping them fit.

Katherine Banwell:

What are common emotional challenges that people face during and after CAR T?

Beth Faiman:

Well, we do give a lot of corticosteroids called dexamethasone, and dexamethasone is really well-known for causing mood swings. So, not only do you have the mood swings from the dexamethasone that we give to protect you against getting really high CRS or fever or side effects, but you also have that physical worry about, “Is this going to work for me? I’m going through this whole process,” and while there are a percentage of patients that can be in complete remission five years out, we’ve seen that in clinical studies, it still remains that some patients will relapse after a short period of time if they have very aggressive disease.

So, that physical worry can really weigh on some individuals. There have been studies of CAR T-cell patients, and we do regular questionnaires through clinical trials, and almost everybody at one time experienced either anxiety or depression. So, if you’re having any anxiety or depression, not only going through CAR T but going through your treatment as well, please bring that to the attention of your healthcare team because we have lots of psychiatrists, psychologists.

And not only that, just your regular primary care provider you might have a lot of comfort with that you can discuss this with. And we can give you medications to help support you through this temporary time that might be more anxiety provoking or cause for depression. After the therapy process, the CAR T-cell initial period, I tend to see pretty quick recovery for most people. They can go right back to work if they want or they can just at least be feeling better which is so important.

Katherine Banwell:

Well, you touched upon going back to work. How should patients think about returning to normal activities like work, travel, exercise?

Beth Faiman:

Yeah. So, this advice does not replace the advice of your CAR T-cell or your myeloma specialist, but each of the providers that I work with, we have different perspectives.

But I tell people, “If there’s something that you want, if you have a cruise that you planned last year but now you have to have a CAR T-cell therapy, and you’re three months out, and you’re feeling great, what can we do to help minimize you from getting infections or having complications?” So, I’m really supportive of patients doing what they want. I have people that I work with that run marathons, and they work out aggressively. So, go do that if that makes you happy and healthy because we want you to thrive with myeloma and through your therapy.

And if going back to your usual activities, and you can do so safely by talking with your healthcare team, if that makes you happy and emotionally happy and physically happy, then that’s what you should do. People will go right back to work in maybe a hybrid sense where you’re not in the office. Some people go right back. So, we really try to personalize our recommendations according to the patients’ wishes and what they want to do and what feels right to them.

Katherine Banwell:

Yeah. That makes sense. There have been plenty of innovations in CAR T. I’m wondering how support has changed. Are there new personnel or CAR T resources available to help myeloma patients and care partners throughout the process?

Beth Faiman:

Yes. Absolutely. There’s been an explosion of research and uptake of the CAR T procedure. And the centers of excellence that deliver this cellular therapy seem to be very well equipped with support. So, if you go through a CAR T-cell process or you’re considering CAR T, you’re going to have a nurse coordinator, nurse practitioner, physician, possibly a physician assistant, pharmacist, social worker, and a whole team, financial counselors, that are there and put in place to help support you through this process. It’s almost like a cookbook. And if you go to most of these centers, they have a – I don’t want to say a playbook or a cookbook.

Those aren’t the right terms. But it’s very well-scripted protocols to what we should follow to minimize your risk of having side effects and help support you the best way you can.

I’ve seen these resources explode in the last few years in a good way meaning that more patients just don’t know they have access to these resources. But if you go to a CAR T-cell therapy center, and if you’re curious about CAR T, ask your provider for a referral and get there as soon as possible because it might be right for you. And the sooner that you can have that consultation, you might not be ready for CAR T today or tomorrow or even next year, but at least you can set that expectation and make that relationship for when you need to go through that process, it’s a little bit more streamlined for you.

Katherine Banwell:

As we begin to close out the program, Dr. Faiman, if you could give one piece of advice to help patients thrive during CAR T, what would it be?

Beth Faiman:

Here I am sounding like a broken record again. Communication, communication, communication. Too many patients, and I hate to say this, don’t want to speak up for many reasons.

I’ve done research for years on this topic, and some patients don’t want to speak up because, “Oh, the doctors are busy. They don’t want to hear from me.” Or, “They don’t have enough time.” Or they accept a side effect as, “Because Beth told me I might have this side, I just have to live with it,” and that’s not necessarily the case. So, communicating your fears, concerns, and thoughts with your healthcare team is the most important thing you can do to thrive with myeloma and thrive through CAR T-cell therapy because we can work with you in many different ways that you didn’t even know.

And, again, that financial aspect, there are so many more resources available through many of the pharmaceutical manufacturers and some of the patient assistance foundations to help support the patient. And even the insurance companies as well to support the patient with this innovative therapy.

Katherine Banwell:

That’s great advice, Dr. Faiman. Thank you so much for joining us today.

Beth Faiman:

Thank you for having me as always.

Katherine Banwell:

To learn more about myeloma CAR T-cell therapy and to access tools to help you become a proactive patient, visit powerfulpatients.org. I’m Katherine Banwell. Thanks for being with us.