Conversations with Dr. Durie - guests Dr. Suzanne Lentzsch and Yelak Biru
In this episode of “Conversations with Dr. Brian Durie,” Dr. Durie is joined by Dr. Suzanne Lentzsch of the New York-Presbyterian Hospital, and IMF Board Member and myeloma patient Yelak Biru. Listen as Dr. Suzanne Lentzsch describes her experience working on the front lines of the COVID-19 pandemic in New York City, while Yelak Biru dives into the myeloma patient mindset.
Full transcript of this interview:
Dr. Brian G.M. Durie: Welcome to this podcast. I’m very, very pleased to welcome today Dr. Suzanne Lentzsch, who is the head of the myeloma and amyloidosis program at Columbia University at New York Presbyterian Hospital. I’m very, very please Suzanne that you could take time out of your busy schedule to join us today.
Dr. Suzanne Lentzsch: Thank you for having me. Thank you so much.
Dr. Durie: And then also joining us is Yelak Biru, who is a myeloma patient, who is a Board Member for the International Myeloma Foundation and is really a strong Advocate Extradonaire. We are very pleased to welcome you both to discuss the impact of the COVID-19 virus crisis, which has such profound impact around the world, and certainly here in the United States. And we’re concerned about the impact for myeloma patients.
And so, Suzanne has been at the epicenter of this crisis in New York City. So I’d like Suzanne by asking you, how you have fared during these crazy times? First of all, thank you for hanging in there and being a front-line worker and getting your PPE on and going into work and helping these patients at the hospital.
So, how has it been for you through these very, very difficult times?
Dr. Lentzsch: First of all, thank you for sharing, or giving me the opportunity to share the experience of being based in New York. It was definitely a sentence. It was a difficult time. I feel like we survived the storm, and we’re still in calm water. And now we have to look at where it went: what do we do, how do we re-organize ourselves. So the time in New York was not easy but somehow we saw the wave coming. We saw that the first case, when the first patient was admitted to the ICU here at Columbia, immediately we started to re-organize our clinic. I have to say, that, the hospital with our clinic was very generous in allowing tele-visits. So what we immediately didn’t let all the patients with smoldering multiple myeloma and MGUS. All the patients who were stable for instance, on Revlimid maintenance, didn’t have any immediate issues, we switched all those patients to tele-visits. And that worked very well.
Dr. Durie: What percentage of your patients were you able to manage with this telemedicine type approach? Was that a majority of your patients?
Dr. Lentzsch: Yeah. That was. I was surprised. It was a majority our patients. And when we all go back to our practice, there are many patients, for instance, who are on a combination of an oral treatment and an IV or subcutaneous treatment, such as dara [daratumumab]. And for many patients, I had the IV treatment on hold and continued with the old treatment. So same, when you go back to the data, you can do the same for Zometa. Just postpone it. We know that Zometa can be stretched to every three months. Also had Zometa for most patients on hold. I was really able to move my, the patients who had to come in.
And there was a point our clinic was completely closed, and what we did is . . . our BMT, our bone marrow transplant unit, that treats patients with multiple myeloma was COVID-free. And that was the last, I would say, we only allowed patients that tests for COVID-negativity to go on their inpatient service, and patients who really needed IV treatment, this is not a long-term solution, but it helped us to get over the, I would say three, four weeks, we had an enormous amount of patients in the hospital and also, I have to say, our patients were afraid of coming to the hospital.
This is a site. We had over 2000 COVID patients in our hospital.
Dr. Durie: Now the doctors who were caring for the myeloma patients. You were restricted to that care. You were not taking care of the COVID-positive patients. Is that correct?
Dr. Lentzsch: That’s not correct. Because what happened is that we did in-patient service in BMT on our transplant and myeloma patients. And there was such an influx of patients that, COVID-positive myeloma patients also came to our That means we had the full protective gear – hazmat suits, the first round on our healthy, non-COVID patients and then to the COVID patients. It was an experience, but it gave us the opportunity to also appropriately, see our patients and continue to care for our patients.
Dr. Durie: That’s remarkable. Yes, tremendous, tremendous work. So Yelak, listening to this, what is your reaction from a patient perspective? This sounds like very difficult times. How does this sound as a patient, with these types of changes?
Yelak Biru: Yes, thanks Dr. Durie. Thanks for having me. I think the best thing to do is not get COVID at this point if possible. If patients continue to be vigilant, even before COVID, myeloma patients, when we traveled on planes or with other people, we had like hand sanitizers, cleaned our tables, and in some cases, either had a mask, or the air purifier thing that we were wearing on our necks.
We were very infection-aware due to the either frequent or the already compromised systems that we already have. But what COVID introduces, I don’t know who’s next to me, either at work, or even in some cases, even at home. They may be exposed to COVID and maybe giving it to me without knowing, unintentionally. So the level of fear amongst myeloma patients, I think, has been elevated through this crisis, end of February, early March.
Dr. Durie: So my impression is that these cautions that myeloma patients have had, has really protected them from the risk of exposure. Actually, Suzanne, I have a question for you. The patients who were COVID-positive, they presumably picked up the infection somewhere in the community. Where do you think they picked up that infection? I’ve heard that it could be in families, or it could at other types of gatherings. What was your impression about the source of the infection?
Dr. Lentzsch: You bring up an excellent point. And I had the opportunity to really carefully watch my patients over the last, I would say, two months. And I made a very interesting observation. All my, you know, I have a large of population of amyloidosis patients. None of my amyloidosis patients have COVID. I cannot explain. I think our amyloid patients are very both aware of the disease and of their own health, I would say. Because when you have amyloidosis, you need a certain health awareness. So our amyloidosis patients, patients with multiple myeloma, who really took care of themselves, separate themselves, didn’t go out shopping, they did very, very well.
And I have many, many patients, the majority of my patients did not pick up COVID. I saw that patients who did get affected by COVID, got it from a family member, or caregivers. Unfortunately, I have many older patients who depended on caregivers. And those caregivers went shopping and went out, had maybe unnoticed infections. I have to say most of my patients received the COVID virus via other family members or caregivers.
Dr. Durie: right, Right, this has actually been an observation around the world, that once the COVID infections enter a community, they can be brought home and spread within family members. I don’t know, Yelak, if you have been aware of this type of pattern and the need for cautions in that regard?
Yelak Biru: Yes I have been, Dr. Durie. So a lot of the myeloma patients that have been around for such a long time have isolated themselves, or self-quarantined. But they have also cautioned their caregivers – caregiver family members – to do the same. But I’ve also seen this, Dr. Durie: Many myeloma patients have friends and family members that have either hypertension or diabetes. If the other person work in hospital, for example, either they’re not coming home, or they are coming home and changing clothes in the garage and coming home with clean clothes after taking a shower.
Dr. Durie: Right, right, this is an important point. My perception is that the issues for our myeloma patients have been predominantly with the other risk groups and risk factors. Patients who have high-blood pressure, who have diabetes, may be somewhat overweight, or have chronic lung or kidney issues. These other kinds of risk factors seem to have been the dominant way the COVID infection has become established in different communities. So the other thing, Yelak, we can perhaps talk about is two aspects. One the emergency changes in care that have been required because of the crisis. Patients have been reducing the Zometa infusions; and obviously, autologous stem cell transplant has been mostly on hold. And there has been some decrease in the use of the daratumumab infusions, and things like that. Have you seen issues and concerns in trying to implement some of these kinds of changes?
Yelak: Yes, Dr. Durie, I have. Me personally. I am on dara. I am monitoring my bloodwork, not just a monthly basis. Now I’m doing it twice a month just to make sure that there aren’t an abnormal dip in some of the numbers, that I need to quote-unquote fight the infection. But the patient community, both online and in-person, I have a seen a lot of people that have gone from bortezomib to Ninlaro, for example. Some people that have daratumumab for some period of time. There were also people that were going to the myeloma centers, in New York, other places, they have been allowed to do the tests in their local hematology-oncology office or their local doctor offices and send the lab results, or the labs, to their myeloma centers. That way they have avoided potential problems and exposures to others.
Dr. Durie: These changes that have been necessary to avoid coming into the clinic, and to avoid exposure, are hopefully things that will be for a couple of months here. We really are very anxious to get back to a timeframe and strategies where patients will be able to come in and get the treatments that they need. So how do you envisage the myeloma clinic by into the summer or into the fall? What do you see as the changes that will be necessary to make it safe and necessary to make it safe and comfortable for a myeloma patient to come in and get the treatment that they need?
Yelak: The telemedicine, I think, is a good alternative, but it doesn’t really replace that in-person view of you as a doctor and me as a patient in each other’s eyes, or in some cases, gauging…You have when we talked about system and when we talk about changing treatment or things like that. I think we can talk about telemedicine is a complement , or a supplement, but not really a replacement for that in-person, human touch that doctors bring to the table. So we need to make sure that we make it stay and also make it possible for patients to go back to the office.
Dr. Durie: Right. I fully agree with you. It’s okay to chat on a video conference about treatments. But there are very personal decisions where a treatment needs to be changed. There’s some important choices to be made. And these are situations where it’s quite important to have an in-person visit, where you can really see the implications of one treatment versus another and just chat about the details. And so, Suzanne, I’m sure you have some thoughts on this?
Dr. Lentzsch: Right, Brian. I completely agree. And I have to say, physicians also suffer not seeing the patient. It was, for me, quite interesting over the last two months, only to see patients, with a blurry camera. Sometimes the camera is directed towards the ceiling, and you don’t even see the face of the patient. Nothing is more important than sitting in a room that the physician can see the patient. And you know that patient by that time – how is the patient coming in, how is their ---, and I don’t remember how often I’ve said to my patients, “Today, you are very quiet. Don’t you feel well? Or is there anything…” So there is a nonverbal connection between the doctor and the patient, that is missing during the tele-visit.
And I see it, and I realized it. I didn’t know that before. I’m realizing there is something very important in the nonverbal connection. So I think what we have to do, especially in New York, I think we have to rebuild trust. And I understand that they are scared to death. They are at home. And they’d say, “You know, I’d rather stay at home. Maybe my myeloma is progressing a little bit, but I don’t want to come in.” And I think that it’s on us. The physicians and the hospital and the practice to regain the trust. So what we do in New York, for instance, we test all our COVID patients before we come in. So that if you come for admission, or you come for outpatient treatment, to get your COVID test. And only negative patients are allowed to enter our infusion center or to enter our practice.
So we know the test is not perfect, but this is the first step. In addition to taking the symptoms, but also taking the temperature. And what we do to, in addition to doing the tests, we complete re-organize our patients, I would say screened. If you come in before, you went to a waiting area. You were sitting with patients in a crowded area. This --- completely restructure. So patients come in and they are guided directly into the room for instance and do not wait in the waiting room. That means we have to decrease the attending, but we don’t want to decrease the volume. So for instance, we thought about to offer morning and late evening sessions. You know, maybe have the practice center open 7, 8 p.m. Or maybe we consider having to practice on Saturday. So that’s all in organization right. Now.
Dr. Durie: These are very, very key points. But I can see that this will be increasing the stress for the doctors, for you. I think it’s very important for the patient safety, but this will extend the hours and it will make it more complicated. And one point, when you talk about testing, I think the key thing, is obviously, to make sure that patients coming in are COVID-negative for the virus. So they would be getting you know the throat or nose check. How about antibody testing? There’s been quite bit of controversy about that. How do you view antibody testing?
Dr. Lentzsch: So antibody testing is offered more and more, but I have to say it is a little bit disappointing. There are a lot of things we don’t know. So we know for sure from patients, and especially, cases or patients that are COVID-positive who had a minor case of the disease, that they might not develop enough antibodies to be positive in the testing. So we are still a little bit puzzled. If you are positive in the antibody testing, that is great. And that shows that you might have protections. If you went through the disease and you are negative in the antibody testing, we don’t know. Maybe you didn’t develop enough antibodies. Or maybe the test is not sensitive enough. So there are open questions. So the antibody testing isn’t great. It is a good tool, but not 100% reliable.
Dr. Durie: I fully agree. I don’t think the antibody test really helps us to kind of open up and give security to patients or workers who are part of the clinic or the process. So, Yelak, there’s been quite a bit of talk in the myeloma community. A lot of patients have been wanting to get the antibody testing and have had questions about it. What are your thoughts?
Yelak: It is confusion, at this time, Dr. Durie. That’s the best I can tell from the patient community. Both for testing for COVID exposure and the antibody testing to see how you are ding, to see if you have had the exposure and have recovered from it. Can I ask a question? One of the things that I think patients are asking. We are seeing some patients in the online community that have gone through 16, 17 days, they are fine. And there are other myeloma patients that have been to ICU, intubated, not now, put into an induced coma…Are there types of myeloma patients that do better or worse than others in your experience?
Dr. Durie: So I think that this is a very important point. Suzanne, I know that you have had a few patients in the hospital setting. Perhaps you can tell us your experience or thoughts?
Dr. Lentzsch: We didn’t really see a direct link that this patient is multiple myeloma negative 40 or has a certain translocation or smoldering myeloma as a proper prognosis. We know that older patients don’t do that well. If you are over 80 or 90, I think they have the highest risks from the complications. I think we need more data, and we’re working on this to find out what specific treatments, for instance, made it more difficult to have a good response to the treatment. Is Revlimid a protection, or in some cases, activate T cells and to have the poorer outcome? So there are a lot of open questions, but we didn’t see anything except what gives you a higher risk to have complications from the disease.
Dr. Durie: Absolutely. I don’t have any impression that our myeloma therapies are a particular risk factor. One of our colleagues Dr. Rafat Abonour highlighted one of his patients, COVID-19-positive on Revlimid maintenance, for example, who was doing just fine, was able to respond, and do nicely. So I don’t have any strong impression that are myeloma therapies are proving to be a strongly negative factor.
Dr. Lentzsch: I agree. There are …. What we probably know that patients who under treatment for relapsed/refractory, often multi-line (therapies), might have a harder time to build up immunities and antibodies. So we know that vaccinations is a part of response. That might be something to detect antibodies in patients, for instance, daratumumab that might be a little bit harder, because of the level.
Dr. Durie: So as we are looking towards the future where we get through this crisis period, hopefully into some sort of a new normal, what I call a new abnormal, because it’s really not going to be back to normal. So what sort of timeframe do you see in New York, Suzanne? You are beyond the peak of the crisis. Will you be starting do stem cell transplants, perhaps, in June, July timeframe? What do you think?
Dr. Lentzsch: We were in the lucky position that our transplant unit was COVID-free. So we feel very confident, that we feel that the patients who need the transplant, to do the transplant. I think sometimes it’s safer to stay in a hospital in a single room…I think in June absolutely we’ll be due to do a stem cell transplant. But what we need to do is either restructure our practice, our outpatient clinic, in order to avoid that any patients can get infected when they come in for treatment. That’s our goal.
Dr. Durie: Yeah, that’s key point. So Yelak, what will it take to make the patients confident that this will indeed the case and that they can go in safely and that they can go in for these kinds of therapies? And it includes not just stem cells, but we’re keen CAR-T therapies and some other more intensive therapies.
Yelak: I think knowing that my doctor or nurse who’s treating me is being tested on a regular basis and make sure that he or she is not exposed or that he’s not actively harboring COVID-19. And making sure that there is enough protection for them. That way, when they come home or when they go back to their clinic, they are minimizing exposure. I think to make some progress, not necessarily toward the vaccine, but towards understanding how to treat this COVID patient … I’m hoping there may be some combination of treatment that gave me healthier outcomes.
Dr. Durie: So thank you for all these thoughts and comments. What I’m thinking right now for both patients and the doctors, there is a stress. People are experiencing quarantine fatigue or crisis fatigue has just been so much effort, and so many changes. So from that standpoint, Suzanne will you be able to take a break sometime soon? During these summer months is when we have vacation, but I don’t know if we see that on our horizon or not.
Dr. Lentzsch: I would love to, but you know, I’m not sure to be very honest, how safe it is to go to outside the States. I know there is excellent healthcare. It will go over. It will be better. If that’s the case, one year pass, that’s okay … I can enjoy Central Park.
Dr. Durie: Absolutely. Absolutely. I made the same decision. We should be in Italy for vacation, but this is not a good time to be flying. So Yelak, how are you handling that?
Yelak Biru: I continue work ... work from home. People are working from home are working longer hours and blending the weekend into workdays as well. So it’s really important to intentionally — in our organization, we are bringing this context out, where you don’t think about work or you don’t think about COVID-19 for at least a day. So you have some emotional recovery time built in your week, or your workday, or whatever. So it’s really important to take care of your emotional makeup health, and not just your physical health. Because it is key how your physical health operates.
Dr. Durie: Absolutely. So I fully support that. I think we’ll have to take these moments, take these days, here and there, as you say, Suzanne, go and enjoy the park. Have some time off, and get away from this for a little bit of time, and we have to advise that for our patients as well who have been faced with many challenges in this time.
Thank you for listening to this podcast. This has been “Conversations with Dr. Brian Durie. For more information about multiple myeloma and the International Myeloma Foundation, please visit myeloma.org.
Dr. Brian G.M. Durie serves as Chairman of the International Myeloma Foundation and serves on its Scientific Advisory Board. Additionally, he is Chairman of the IMF's International Myeloma Working Group, a consortium of nearly 200 myeloma experts from around the world. Dr. Durie also leads the IMF’s Black Swan Research Initiative®.