Lisa Hatfield, PEN’s Myeloma Empowerment Lead, speaks with Dr. Krina K. Patel of The University of Texas MD Anderson Cancer Center about best practices for coordinating care after CAR T-cell therapy, particularly when patients transition from academic centers back to their community oncologists.
Dr. Patel outlines key safety considerations, symptom monitoring strategies, and communication pathways that support continuity of care, and offers an [ACT]IVATION tip to help patients remain actively involved in their follow-up care.
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Transcript
Lisa Hatfield:
Dr. Patel, you work closely with both academic CAR T teams and community oncologists, so you’ve seen firsthand how important coordination becomes once patients return home after treatment.
For patients who receive CAR T at an academic center but are followed long term by a community oncologist, how should care coordination work to ensure safety and continuity, and what role can patients themselves play in staying engaged and proactive in that process?
Dr. Krina K. Patel:
Yeah, so this is really important, especially when the REMS has gone down to potentially 2 weeks. Now, I will say most of my patients stay with us for at least 3 weeks due to when that CRS and ICANS happens, our goal is to get you home once I know the acute issues aren’t going to happen, right? Because that way, you’re going to be safer and feel better, and your doctors aren’t going to have to deal with things that they’re not used to. So, once that happens, we really want to make sure for things like cytopenias, neutrophils being low, you might need, you know, G-CSF, might need transfusions. If you get an infection, we really want to make sure that you’re treated, and we figure out what it is and treat it really quickly.
Especially the first 3 to 6 months after CAR T. And there are certain things like neurotoxicity, cranial nerve palsies, or colitis. Again, small risk, but it can happen, that we want to make sure you, as well as your doctors, know, hey, these are the things that I need to, you know, look at quickly, or get you back to me quickly so we can figure out what to do. So, really, what we’ve done is, we have a letter at the day 30, or, you know, whenever you’re going back home, we actually summarize everything that you had done in terms of the treatment.
What happened with CRS and ICANS, did you have any antibiotics or steroids or anything else we had to give? You know, what are you going home on? What medications? Things like IVIG support, for most of my patients, the first 3 to 6 months, I tell people to get IVIG once a month, usually improves after that, but, you know, what to look out for, what levels of IgG to look for after that.
So, you know, we don’t usually just let our patients go and never see them again, but at least for the first few months, we want everything to be recorded on that letter, and we send it. And we also have a phone number that they can reach out to in terms of if there are any questions or something’s happening. Our CAR T team is ready there in case something that no one expected, or, you know, you just forgot that I needed to know about this. So, we try to have 24-hour coverage for our patients once they’re home, just to make sure they have resources.
Lisa Hatfield:
That’s helpful. When a patient goes home, then, and maybe they start experiencing some kind of side effect, like diarrhea is a pretty, seems like a pretty benign thing, but you mentioned colitis, and that can happen a little bit later. Should they contact their oncologist, or should they contact their PCP, normally 2 months out or 3 months out, we just call our primary care provider. What is your recommendation on that?
Dr. Krina K. Patel:
Yeah, I think if you’ve had CAR T, especially cilta-cel (ciltacabtagene autoleucel [Carvykti]) and the diarrhea, you know, people have diarrhea with, you know, lenalidomide (Revlimid) and pomalidomide (Pomalyst), and a lot of our therapies in myeloma cause diarrhea. But if it’s something that just is not getting better, you’re starting to lose weight, or it’s just watery diarrhea that’s not improving, I would say let your oncologist know. You know, we will look for infections and make sure there’s not something else going on, but at the same time, we want to figure out if this is CAR T related. So most of our patients that get the colitis related to CAR T, it usually happens after the first month, to the first 6 months. Very rare for it to happen after that. It can, but again, much more rare. So the first 6 months, I would say, just make sure anything significant you’re having, even infection, we just want to know. So we might say go to your PCP, it’s okay. But, just so we’re in the loop.
Lisa Hatfield:
Okay, that’s super helpful. And then, do you have a specific [ACT]IVATION tip for patients going back to their community oncologist after CAR T?
Dr. Krina K. Patel:
Yeah, so we’re excited you get to go home, but don’t forget we’re still here, so call, send us messages, whatever you need. If something’s going on and you don’t know, it’s better we know than, and we say that it’s okay, rather than finding out later that something more serious was happening.