Communication is key when transitioning multiple myeloma care between community and academic centers, experts emphasized at the CURE Educated Patient Summit.

When caring for patients with myeloma, clear lines of communication between community and academic care centers is crucial, as was explained during the CURE Educated Patient® Multiple Myeloma Summit.

During the summit, event chair Dr. Saad Usmani was joined for a panel discussion on the transition of care by Dr. Tarun Wasil and patient advocate Yelak Biru.

Usmani is chief of myeloma service at Memorial Sloan Kettering Cancer Center in New York City, and Wasil is a hematologist-oncologist with New York Cancer and Blood Specialists. This year will mark 30 years that Biru has been living with multiple myeloma; a recipient of CAR-T cell therapy, he has been treatment-free for two and a half years and said he remains in a strong, stringent remission.

Usmani: The topic that we're going to discuss is this transition between academic and community colleagues and the interaction. I think Tarun you and I have had very good relations in taking care of patients the past few years. And I'm going to get some comments from you in the context of making that transition, especially for patients who have undergone cellular therapy or transplant. But Yelak, I want to ask you and give you the opportunity to share with us your journey through CAR-T cell therapy and then recovery, and how you're living and thriving now.

Biru: If we go back 30 years for me, I think there are three or so distinct points of transitions of care that happen. One is at diagnosis. When you are diagnosed at the primary care physician or the ER or the orthopedic person that managed your back pain over a period of time, and they tell you, you need to go to a hematologist-oncologist for a full workup of your cancer, that is one major transition of care. The second one, I think, is at progression. If you are initially treated and then you end up progressing, you may want at that point to go to a specialty care [center] and be referred to a myeloma specialist or a myeloma center of excellence. And while you are there, if you are participating in a clinical trial, and then that ends, you may need to go back to your primary care physician or your hematologist-oncologist.

For me, my journey has been both in academic settings, centers of excellence, but also in the community setting. I remember a while back when I went from an academic setting to somewhere in Arkansas, which was not an academic setting, it was a community setting. The biggest worry I had was related to, who will be my primary provider, if you will, my primary carer from a physician perspective — would it be the community oncologist, or would it be now the myeloma specialist? How would they talk with each other? How do they do handshakes between each other? How do we transition the records I have from the community center back to the center of excellence and from the center of excellence back to the community center? Who from my current healthcare team will remain involved in my care?

But I think more importantly, as I lived longer with myeloma, the biggest challenge has also been who coordinates care. So I have gone through CAR-T, I have not had a transplant, but if I get a flu or a cold or pneumonia, who's a primary person who ends up coordinating my care? There are a lot of questions like that that need to be brought up and discussed between your myeloma specialist, your community care specialist and your primary care specialist.

Wasil: Thanks to Yelak for bringing all these issues up, because it's always good to hear from the patient's perspective, and multiple myeloma is a prime example where community oncologists such as me have to work very closely with the tertiary care center colleagues such as Dr. Usmani and his team members. And if we want to make sure that once the main treatment, such as autologous stem cell transplant or CAR-T cell therapy or step-up dosing of the bi-specific, has been done at the tertiary care Institute, which is a requirement, and once a patient comes back to us, we should have everything in place to make sure that it is safe for the patient to get the continuation of care at our place, as well as we can follow these patients for a number of years these days for general healthcare as well as other oncological issues and hematological issues that come up.

We have been lucky that we have Dr. Usmani and his team at MSK, we get emails, we get text messages, whenever there is a patient being transferred to us, and what kind of treatments that they should be getting, in terms of any prophylactic antibiotics. And we do continue to actually communicate with them on a, at most I would say, weekly basis, initially, and take care of the patient in that perspective. And obviously we monitor the patient's immunoglobulins. We administer those immunoglobulin IVIGs if we need to, and cytopenias are very common, sometimes long-term, with autologous stem cell transplant as well as CAR-T cell therapy, and sometimes with bi-specifics also. So we make sure that we monitor those counts, and also we monitor these patients for any secondary primary malignancies. Most of these are hematological and myelodysplastic syndrome-like conditions, but again, monitoring them and investigating these patients at the right time and also then communicating back to the team at the tertiary care center is very, very important, and referral back to the tertiary care center for any of these untoward side effects, we are pretty proactive in that, and we are very lucky in that respect, that New York Cancer and Blood Specialists has a special affiliation with Memorial Sloan Kettering Cancer Center.

Usmani: This is the kind of engagement that most academic centers have with community colleagues. But I think the two-way communication is really good in mitigating things. And I think this also helps in getting patients access to clinical trials on a timely basis as well, because timing is of the essence. You know, if the myeloma decides to come back, it can either do this in a slow-moving fashion, or it can be quite rapid. So, having open lines of communication is super important. Yelak, how have you seen this improve over time?

Biru: Over the last 20 years, we have over 17 approved drugs, 17 different ways of administering them, and 17 different ways of managing side effects, escalating and de-escalating treatments. So the patient really needs to have trust in the physician, and the physicians need to have trust amongst each other. So for me, that three-way trust between myself, the community physician and the tertiary care myeloma expert, I think, is really central.

There may be times also where either the community physician or the myeloma expert may be too busy with other things, so patients may need to be the ones who may be referring themselves, either to an expert or nudging their community physician, to have a conversation with an expert. But in addition to that, I think there are patient navigators at centers of excellence that are called oncology navigators, or oncology nurse navigators that are able to help. There are foundations like the International Myeloma Foundation, that can help you there. But also, don't forget the patient's journeys and learning from other patients. So joining myeloma support groups in person or virtually, being able to participate in social media groups, there are specific, targeted groups on Facebook that allow you to be able to have an open conversation. It doesn't take away or it's not a substitute to that trust and conversation you have. And I think it gives you a complete 360-degree view of what you are signing up for as a patient when you go from community physician to a center of excellence, or when you go from maintenance and now you have to go into either transplant or CAR-T or bi-specific treatment.

Transcript has been edited for clarity and conciseness.

For more news on cancer updates, research and education, don’t forget to subscribe to CURE®’s newsletters here.