CAR T-Cell Therapy Recovery | What to Expect and How to Protect Yourself

Katherine Banwell:

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.