CAR T-cell therapy can feel overwhelming, but understanding the process can help patients and caregivers to be more confident and prepared. Myeloma expert Dr. Beth Faiman shares essential advice on what to expect, describes the importance of the care partner role, and dispels some of the biggest myths about CAR T, including why it’s no longer considered only a last-resort treatment.
Dr. Beth Faiman is an Adult Nurse Practitioner in the Department of Hematologic Oncology and Blood Disorders at the Cleveland Clinic. Learn more about Dr. Faiman.
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Transcript
Katherine Banwell:
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.