Skip to Navigation Skip to Search Skip to Content
Search All Centers

Update on Coronavirus Issues for Myeloma Patients

Read Transcript
View next

Published on May 1, 2020

Key Takeaways

Multiple myeloma specialists are working to limit patient exposure to the coronavirus while not impacting treatment outcomes. “I think the most important thing for us to think about is—care has to be delivered in a safe environment, and we're trying our very best to make sure we do that,” explains expert Dr. Noopur Raje.

Dr. Raje, from Massachusetts General Hospital, and Dr. Faith Davies, from NYU Langone Health, share recent coronavirus updates for myeloma patients and care partners. They also answer live questions from the online audience, and Dr. Raje shares her own personal experience with COVID-19. Watch now as myeloma experts discuss antibody tests, vaccines, patient data collection, pre-existing conditions and more.

[Due to extreme load on our website and Zoom platform, viewers may experience a time delay between the audio and video of the interview - please note the transcript can be read below.]

Featuring

Partners

NYU Langone's Perlmutter Cancer Center

Transcript | Update on Coronavirus Issues for Myeloma Patients

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Recorded on April 29, 2020

Andrew Schorr:
Greetings, my friends. Thank you for joining us for this myeloma Ask the Expert program. I'm Andrew Schorr in Southern California. Joining us are two experts who are in the trenches, if you will, related to myeloma, and I hope they can join us now.

Joining us from New York City is Dr. Faith Davies who's at the NYU Langone Cancer Center. Also, joining us from Boston at Massachusetts General Hospital is Dr. Noopur Raje. Ladies, thank you so much for being with us, and it's so important to talk to you at this time. I want to remind our audience that if you have questions, use the Q&A button at the bottom of your screen, send it and my partner, a lifelong partner, Esther Schorr, who's our producer today, she'll take a look at that.

Many people have sent in questions already, and we're going to go through these. You've sent in some terrific questions. The doctors have agreed that we'll go a little longer than 30 minutes to get to as many as we can. I want to start this way. Dr. Raje, you are a myeloma specialist in Boston, which is one of the areas that's been particularly affected, as New York City, where Dr. Davies is, but my understanding is you have been diagnosed with COVID as has been your husband. So maybe you could just share your personal experience with COVID.

Dr. Raje:
Sure, Andrew. Thank you for doing this and thank you for having me on today. Obviously, this is something which is now out in the public domain. My husband is a cardiologist at Mass General, he's an electrophysiologist. And he came down with fevers, now it's close to about seven-and-a-half weeks back. And the first week was just high fevers, but he was quite sure that this was quite different from the usual flu and got himself tested pretty early on. And with that fever, I had actually quarantined, because within two days we knew he was COVID-positive. And subsequently, I took care of him for the first week.

And part of the reason for me sharing this on Twitter, this was now early March, Andrew, and there as you can tell, we are learning more about this every day, and the thinking is changing on COVID-19 every day. And early March, I don't think we had as much information. And what I was seeing was very different from what I was hearing in the news and in the media, and I really did want to serve as a resource to be sharing what I was seeing firsthand. Eventually, I did have to take Jag to the hospital, he was in ICU for over 24 hours. The good news is he did not need to be on a mechanical ventilator.

He did have the pneumonia, but he did get better. And it's now, we're close to, as I said, seven, seven-and-a-half weeks, and he is getting a whole lot better. But there's so much we learned along the way that it was important to share. Along with this, when I took him to the hospital, I was tested. I had absolutely no symptoms and to date, I really don't have symptoms. But my guess is I was exposed to him, and I had been consistently and persistently COVID-positive. And to me, what was interesting is here are two people in the same household, both of us COVID-positive but really a very different disease course in each one of us, and so much to learn from it.

Andrew Schorr:
One last question for you being in Boston. So you have myeloma patients, I imagine, who've been positive and maybe been hospitalized. The myeloma community worries if you are a myeloma patient, does that mean a much rougher go?

Dr. Raje:
It's hard to say that, and I don't think you can say that right away. I've had myeloma patients who have been completely outpatients who've tested COVID-positive and had mild or no symptoms alone. And a lot of that has to do with our ability to test. And in Massachusetts as well as in New York where Faith is, we are testing a lot more people. So there is the whole spectrum. There are people who get sick as well. But in general, there are plenty of folks who remain fairly asymptomatic or with mild symptoms who can be taken care of at home.

Andrew Schorr:
Okay. Well, first of all, I'm so happy you're doing well, and your husband has improved greatly, and thank you to both of you as healthcare providers being at risk and yet being committed to the myeloma community. Thank you so much, Faith Davies, in New York. So New York has definitely been ground zero in the U.S., and you too have myeloma patients who've been tested positive and treated for coronavirus, the COVID-19 ailment. What's your experience, Faith?

Dr. Davies:
Hi ,Andrew. Thank you for having me. So I have to start off by saying, when we all first learned about COVID-19, I think I personally was petrified that all of my myeloma patients were going to come down with it. I'm going to have a really rough time. And I'm not sure pleasantly surprised is the right expression, but I have to say that yes, some patients have tested positive and maybe not as many as I was worried about. And many of those patients as Noopur said have actually tested positive but have been well and not had any problems. Others have tested positive and obviously have needed to be admitted and to have treatment.

But I think our overall experience is that it's difficult to tell, I was going to say, I wouldn't say myself that myeloma patients have a worse time of it than any other patient. And I think a little bit is to do with what other health issues patients have, because there's a lot of data now about potentially patients with cardiovascular disease having problems, patients who are maybe a little overweight, have other lung issues and problems. So I think myeloma is one piece of the jigsaw, but I think it depends what other bits of the jigsaw puzzle patients may also have.

Andrew Schorr:
Okay. We'll get to the questions in just a second. I just have one other one. Dr. Raje, as you may be aware, there was an article in The Washington Post I think from the American Association of Cancer Research virtual meeting related to a study from China and related to cancer patients. And it talked about the higher risk of complications from COVID for blood cancer patients, leukemia patients, lymphoma patients and myeloma patients, and some lung cancer patients, some others as well. And it talked about three times the risk of serious, severe complications. What do you make of that? And you all are scientists seeking data. So where are we with data so that we, patients who are at risk, have a sense of the level of our risk?

Dr. Raje:
That's a great question, Andrew. And I think we're just learning about all of this. I do think having cancer in itself puts you at a slightly higher risk given that you're immunocompromised. Other risk factors, which Faith has already mentioned, is cardiovascular disease. Diabetes is turning out to be a fairly important risk factor with COVID-19. Now, with cancer it's hard to generalize like this, because people with cancer have different levels of immune compromise. Thinking about myeloma specifically, even within myeloma, you have a wide spectrum. If you are in a complete remission and you're doing fine in a complete remission, your immune system is in pretty good shape.

Whereas somebody else who is just about starting to get treated is a little bit different, and their risk is probably different. So I do think it's related to what other medical problems you have associated with the myeloma, which can predispose you to increased risk. Just to get to this though, we are as a myeloma community collecting data, and we will be prospectively collecting data from not just the United States but from all over the world. And we're doing it through different organizations. I'm mostly involved with the International Myeloma Society wherein we are getting data from everywhere and really trying to understand what the outcome of COVID-19 is on myeloma patients specifically, we just don't have that data just as yet.

Andrew Schorr:
Right. People want a plan. So for instance, Dr. Davies, some people have MGUS or smoldering myeloma, and they say, "Well, are we at less risk?" And I'm sure people have been asking you rather than somebody who's been living with myeloma for years, and it's more advanced.

Dr. Davies:
Yeah. So again, I think there are two things here. One is how immune-compromised the patient might be, as Noopur says. So, often patients with MGUS, their immune system is actually pretty good. Some patients with MGUS do have a slightly lower immune system, and so they may be at an additional risk. I think that also it depends. We know that MGUS patients tend to be a little older and may have other things going on with their health. And so I think that's something else to put in the mix. But as we've all learned from Noopur's and Jag’s experience, even if you're fit and healthy, you can still be affected by the virus. And so I think that it's those general things that we all know we need to do, I think we're important, whatever underlying disease you have.

Andrew Schorr:
Right. Noopur, going forward, so there are many myeloma patients who get immunoglobulin. I actually get it as a leukemia patient monthly, and so there has been testing, of course, to see what our IgG levels are. Does that test give you any sense of where somebody is and what their risk is going to be?

Dr. Raje:
So the IVIG that we did for patients who have low immunoglobulin levels, it's more to boost your immunity from all kinds of infections. There are a few things that we've done, at least at our center, and it's very cancer center dependent now, we want to minimize patients coming into the hospital, especially where you have these very high surges of COVID-19. So what we're doing with IVIG, etcetera, is doing these infusions as home infusions in people who need them. And typically, if your IgG level is less than 400, we do recommend IVIG. The immunoglobulin sticks around in your body for about a month, so if you delay the treatment as opposed to going into the infusion room to get the infusion is probably a better thing.

You do not want to expose yourself to other healthcare providers or other patients around. And social distancing is really important in the context of COVID-19. Your other question, I think, Andrew, was more related to antibody response, I'm guessing. And I don't think checking your immunoglobulins will give you a good sense of whether or not you have immunity to this specific virus. There are plenty of tests, there are many tests out there, not a lot of them are validated, and those studies are just happening. And the data is just about coming out in preprints and in publications now looking at IgG and IgM levels.

And what that really tells you is whether you've been recently exposed to COVID or whether you'll have immunity to COVID. And I think we still have to learn a lot more about immunity to COVID-19.

Andrew Schorr:
All right. So, Faith, let me ask you this question then. So when there's a vaccine and you watch the news and we are all watching the news saying, "Well, when will there be a vaccine?" Will myeloma patients mount the same antibody response, or will patients who have myeloma necessarily not respond, that the vaccine won't work or won't work as well? Got a clue?

Dr. Davies:
That's a really good question. And I think that that's going to be an ongoing debate because if you think about the flu vaccine, if you ask doctors about the flu vaccine, whether myeloma patients respond to the flu vaccine, some people will say,  “Don't have it.” Other people will say, "Oh, go ahead and have it." There is certainly some data when people have looked at flu vaccines that myeloma patients can respond. Sometimes they need to have a larger dose of the vaccine or maybe need to have two split doses to make sure they get complete coverage. And so we would hope that a myeloma patient would respond, but that's something that we're going to have to look at and study just as we have with everything else.

I think one thing we do know is that it won't be a live vaccine, it will be a dead vaccine, so it will be a vaccine that myeloma patients can have. And I think as with all vaccines, it's probably unlikely you'll respond if you're having active treatment or have very active myeloma, but for those patients that maybe their myeloma’s quieter or indeed they're on maintenance therapy or something like that, then we'd be hopeful they would respond.

Andrew Schorr:
Okay. Now, we've been getting a lot of questions. If you have a question, you can send it in now, we'll get to as many as we can, with the Q&A button at the bottom of your screen. Dr. Raje, here's a question we got. People are trying to determine how do they move forward now, particularly as there's a buzz around the country, even in New York and Boston about opening up to some degree. Here's somebody who works in a casino. Now, the casino has been closed, but the casino may open, they're certainly pushing for that in Las Vegas and some other places. And this person does work in close quarters with other people, yet they have myeloma. They're wondering what to do. Do they need to get some disability? What would you tell somebody, Dr. Raje, based on that work or close quarter work?

Dr. Raje:
Yeah. It's a tough situation to be in, and I know people need to go back to work as well. But as of right now, I think until we get some of the other important details around this virus, such as who is immune to it, who has been exposed, who are silent carriers, I do think the thing which is going to help us most in the immediate is social distancing. So if you can avoid being at workplaces such as a casino where you're in contact with a whole lot of other people, the recommendation would be to do that. Casinos, etcetera should be the last things to open up, and we should be focused on just doing what is absolutely needed. And until we have a better sense of treatments, vaccinations, immunity, the safest thing for all of us, not just for myeloma patients, this goes for all, is to socially distance, stay home, stay safe.

And that's the only way where we are going to be able to really flatten this curve and not overwhelm the system. So my recommendation would be if you can stay home, please do that. And if you have to go out for whatever reason, masking up is really critically important. And the masking up is more to make sure that you are not passing this on to anybody else because if you haven't been tested, it is very possible that you're also COVID-positive, and you can pass it along to somebody else.

Andrew Schorr:
Okay. So, Dr. Davies, you like Dr. Raje are at major centers where research goes on, clinical studies, and you both are myeloma specialists where people may be coming to you from afar. So now going forward, whether or not somebody is in one of your clinical trials, they're saying, "Well, do I travel to see you? Is that risky? Or are some accommodations being made?" So where do we stand now with the relationship between the myeloma specialist and the more distant patient?

Dr. Davies:
I think if anything good has come out of this it has been the hospital's ability to take on modern technology. Certainly at NYU, we're doing video conferencing like this with our patients. So rather than seeing them in-person, we're not just chatting over the phone, because sometimes you don't get the same kind of experience, we're actually Zooming into their houses and talking to them. And I think at the moment, that is a very appropriate way to try and look after a patient. But again, we're fortunate that we're beginning to look at different ways of trying to open up, and so we're thinking about how we can test patients on-site, how we can monitor patients closely so that if we need to see them in-person, we can do, so that we can have a COVID-safe area if that's the right expression.

So all of those things are going on in the background. But I think as Noopur said, if you don't have to travel, then trying to use technology like this is really important.

Andrew Schorr:
One other question related to that about local resources. You might do telemedicine with me, but you really might also want to get a very current blood test. Let's say I live way out on Long Island somewhere. Would sometimes there be an arrangement between you and NYU and me going to a very local place way out in Suffolk or Nassau County, because I used to live in New York and where you can get a sufficient blood test and that data goes to you?

Dr. Davies:
Yes, exactly. So those are the kinds of things that we're being forced to look into. And in some ways that, as I say, it's a good move for medicine to be able to do that, but really trying to limit the amount of contact that patients need to have outside of the home. And so as you say, blood tests at home, or indeed we're now thinking about COVID tests at home or a local center before coming in to see us. So yeah, I think that's really important. The flip of that coin, which is also important is it's getting that balance between exposure to COVID but also making sure that myeloma treatment doesn't get affected too much, and if it is affected, that it's not detrimentally affected.

And so I think there's always got to be a little bit of a balance about that. We're hearing a lot about people not phoning 999 for heart attacks and so on. And I think that making sure we all, each patient has a plan of action about the best way to manage their myeloma is really important.

Andrew Schorr:
You were in the UK, I think it's the 999 number there, and 911…

Dr. Davies:
…I'm sorry, yeah, 911.

Andrew Schorr:
Noopur, that relates exactly to something I wanted to ask you about that Faith was just talking about, and that is some of the treatments in myeloma are infused and some are oral. So infused by definition I would think other than you talked about maybe some home infusion of IVIG, but if it's some of these other monoclonal antibodies and things like that, you would go to your clinic to get it. So how are you balancing the benefit of infused therapies, oral therapies, who needs what when?

Dr. Raje:
Yeah, I think, great question. And I just want to add and echo what Faith has already said, Andrew. One of the things is, our myeloma patients also get COVID. One of the things our cancer center's done, for example, is created a COVID positive area and a COVID-negative area. So if you're COVID-positive, you get treated in that space, if you're COVID-negative, you get treated in the COVID-negative area. Places like my hospital, Mass General has the luxury of having a lot of affiliates in the surrounding neighborhood, and we've transitioned a lot of our care to suburban Massachusetts. So we have a facility in Danvers, for example, we have a facility at Waltham, and we have full-fledged infusion rooms, and we try and do the infusions there.

The other neat thing about myeloma is if you need to be on infusional treatment, including drugs like carfilzomib (Kyprolis), you could actually do it once a week as opposed to doing it twice a week. And I think this pandemic has forced us—or, I was always using weekly in any case, but for some of the others to use it. And if on the other hand you have a safer oral alternative, which in myeloma, there are plenty of those as well. I think picking the best treatment for your patient is absolutely critical, making sure that you do not compromise their care is critical, but using some of these resources outside of the main hospital is something which we are trying to do. So a lot of infusions happen at our satellite sites, for example.

Andrew Schorr:
Okay. But just to follow up, it's not necessarily for an individual patient, a rush to all oral therapies, it's an assessment, you and your myeloma doctor, what's right for you.

Dr. Raje:
Absolutely. It's based on the disease, and absolutely, you pick what's right for them. And I do want to reassure the myeloma patients out there, because I think we're thinking about this very, very strategically. We do not absolutely want to compromise anybody's care, and I think the most important thing for us to think about is care has to be delivered in a safe environment, and we're trying our very best to make sure we do that.

Andrew Schorr:
Okay. Faith, I know these ladies very well, so I use their first name. Faith, related to going forward, we talked about research and that hopefully there's some research going forward and also dispersing care, it can be closer to home, telemedicine. Now, going forward, people are wondering about their relationship as they go out in the world, so Noopur talked about masks. They may have family members who may even be going further afield, and so they worry about that. How do you talk to people about their relationship with family members and remaining safe?

Dr. Davies:
I think that there are two issues here. I think that you have the nucleus that you live with, and as we've learned from Noopur and Jag, it's possible to accidentally pass that between you. And so yes, you need to be careful if somebody in your household is unwell, but I think it probably is difficult to completely shield yourself from it. But I think people who are outside your immediate family nucleus, we all hate it, myself included, but I think we have to social distance and not spend time with them at the moment. I would imagine as we learn more and as time changes, then that's also going to change, but at the moment, I think we just have to be very stringent with ourselves and just stick to our nuclear family.

Andrew Schorr:
And about travel, people are worried about travel. You would be hesitant to recommend to a myeloma patient to travel much, right?

Dr. Davies:
Yeah. I'm personally desperate to get on a plane to visit my mom, but I'm fit and healthy, and I'm staying put. So I think that at the moment, we don't know enough about it. I think that when we turn the curve as Noopur was saying, we're in a very different position now than we were two weeks ago. Two weeks ago within our hospitals, we were really trying to say, "Please don't come." Whereas now we think we're in a position to say, "This is a COVID-free area. This is not. If you need to come, then please come." You can imagine in two weeks’ time, we'll have more information, and we'll be changing our thought process again. But trying to make sure we have a safe area is the most important.

Andrew Schorr:
Noopur, I want to ask you about protective gear. So you mentioned earlier about masks that protect us from transmitting to others and imagining you being COVID-positive, you do that big time if you went outside, when you have daughters and all that. I know you're very careful. Okay. There's a level of masks called N95 masks, and I know you were really short on that in your hospitals and now hopefully, we're catching up where you as healthcare providers have the right protective gear. But as these become available for the consumer, would that be protection for the myeloma patient where they feel they have more of a safety net and can traipse around more, if you will?

Dr. Raje:
Yeah, so I don't think the general population needs an N95 mask. Even at work, when we are working in the hospital, we do not use an N95 mask until and unless we are on the COVID unit. We are taking care of COVID-19 patients, and unless we are in direct contact with COVID-19, there is really no reason to use N95 masks. So N95 masks should be restricted to the healthcare professionals, restricted to the ICU setting, emergency room setting and the COVID-19 floors, which all of our hospitals have, and we're using them there. For all the rest of us, and every time you step out, I say this over and over again, consider yourself a carrier until proven otherwise.

And whether you've been tested negative or positive, wear a mask. Using a cloth mask is perfectly reasonable, it's not going to allow you to transmit that infection to anybody, specifically if you're feeling well. So I don't think you need to run out and get N95 masks, in fact, you should not because that's going to jeopardize the healthcare providers in the country.

Andrew Schorr:
Okay. Faith, we were talking about medicines earlier and somebody getting the right myeloma treatment. Is there any data at this point that either a myeloma medicine could help provide some protection, like they're looking at that with some other blood cancer medicines that can reduce cytokine storms and things like that? I'd take a medicine like that they're looking into. And then conversely, there's been some chatter on the Internet, and, of course, anybody can say anything, whether there's any existing myeloma medicine that puts you more at risk.

Dr. Davies:
That's a really interesting but hard question. Many of the medicines we're using in myeloma, by definition affect the immune system and can affect the way that both our B cells and our T cells, two cells that are important for the immune system work. And so the two medicines there’s been a lot of chatter about, what we call the IMiDs, so that's lenalidomide (Revlimid) and pomalidomide (Pomalyst). As well as the proteasome inhibitors, so carfilzomib, bortezomib (Velcade), ixazomib (Ninlaro). And there’s been talk out there; some say they may be a good thing to take and others say they may be a bad thing to take. I truthfully don’t know. And I don’t think there are any studies to suggest one way or another.

And I think we come back to that same point again of every patient being an individual and reviewing and weighing up what's the best thing for that patient. What's the bigger risk, catching COVID or having the myeloma going out of control? So you're completely correct, some of the drugs we actually use to treat other blood cancers are actually now being used for treatments for COVID-19, and that's quite exciting. But in the myeloma world, I don't think we know, and I don't think we're going to really know, so it's just a risk/benefit.

Andrew Schorr:
Noopur, you're nodding on that. I'd like you to weigh in on this as well, if you have anything to add just because that's such a key question, is the therapy that someone's on helping or putting them at risk?

Dr. Raje:
Yeah. I agree with Faith completely, we just don't have the data, Andrew, and that's part of the reason why if you are somebody who's a patient who's tested positive, make sure you let your doctor know so that they follow the data. We are gathering data and we're going to have about 500 patients we think by ASCO, and we are going to look at these questions which are very relevant questions. Does an IMiD make things better or worse? Does proteasome inhibitor? What does a monoclonal antibody do? And all of us want to know the answers to this, we just don't have the information right now.

Andrew Schorr:
Right. And we should just mention, she mentioned ASCO, American Society of Clinical Oncology. That's a meeting that normally would be in-person, a huge meeting of cancer specialists around the world, it's going to be virtual this year. It's the beginning of June, so there'll be more data there. And we did get a question, and it's really about myeloma treatments moving forward. So I just want to ask you about that, Faith, I'll start with you. There've been some new approvals in myeloma, and there are some that are coming, that may be in the next couple of months, as the FDA tries to catch its breath and move forward with non-COVID things, but just for the treatment of the disease.

And somebody wrote in and said they saw something on the Internet that a pharmaceutical company, and again, I can't verify, was claiming that CAR-T treatment could be a cure for myeloma. So CAR T is one immunotherapy. We have other targeted treatments, BCMA and all kinds of stuff like that. Do you want to comment on what we're seeing in hope for people with the underlying myeloma on top of this situation we have now with the pandemic?

Dr. Davies:
Yeah, of course. I'm just going to do a quick backtrack, which is cheeky of me, but Noopur was saying about getting your doctor to send the information to the International Myeloma Society, which I think is really good. It was just to say there is another patient portal called Myeloma Crowd, which is collecting patients’ personal experience of COVID as well. Many patients live in smaller areas, and maybe they won't be able to get access to the IMS, so that's another option.

Sorry. So yes, treatment-wise, it's actually really exciting, and I was going to say, I think for the myeloma doctors and for our treatment, it's a little bit worrying at the moment, because we've got such new things coming along. As you say, there are the BCMA antibodies, there are these bi-specific antibodies that can grab immune cells and grab a myeloma cell, and then there are these CAR-T cells. And I think they are going to make a huge difference to the way we think about myeloma in the fact that we will have a whole new array of tools to work with and different combinations that we can use. The results are very exciting, they look as if many patients do respond, but a lot of the data is still early. So for many of the studies, we've only been following patients for six months, 12 months or maybe 18 months. And so I think it's important that we have optimism, but I'm not sure we can say we've cured anybody yet.

But certainly, many of these treatments because they work in a different way, seem to be very effective even in patients who have had lots of other treatments before. So I think it will be interesting moving them higher up in the disease and seeing what happens for patients who have not long been diagnosed, but those are all the studies we're going to do over the next couple of months.

Andrew Schorr:
Okay. Let me just recap a couple of things, and then I have a question for you, Noopur, about travel guidance for people and you alluded to that a minute ago. So first of all folks, for the myeloma you're living with or your loved one is, more treatment's coming, a very major medical meeting coming about a month from now. There's the ASCO meeting, lots of data coming out. And as Noopur said, also discussion among the cancer specialists as they get data about COVID and myeloma patients with worldwide data, more than what we've just had a little snapshot from, that’s limited from China, that got everybody really worried, putting in more context.

And also your personal story, whether it's through Myeloma Crowd or the various international myeloma foundations that they're collecting this data, and myeloma specialists are sharing data so that we really can make decisions based on data. Now, Noopur, here are Mrs. Jones and Mr. Rodriguez, they're saying, "I want to get out and yeah you're missing data, but I have cabin fever, or I have a job I have to go to or family members I need to connect with.” What are you giving to your patients about travel guidance?" I get it about a mask, and Faith is not going to go on a plane to see her mother in England, so what are you telling people? Like, “Go in a car and wave to your mother-in-law.” What do you do?

Dr. Davies:
Those are all great questions. Technology has really come in in a big way, right now, I think we're FaceTiming people more. I will tell you, Andrew, I have a team meeting with my team every day at 4:30, we call those huddle rounds. And I feel we are even more connected than when we are at work, because when we are in the hospital, all of us are running around doing things. And I think the question of—I do think we need to remain connected, because as humans, we need that connection with each other, but there are different ways of doing it. We had a birthday over the weekend, and we all from different parts of the globe connected through Zoom the way we are doing this meeting.

So if you can avoid travel, I would certainly say do not travel, not right now, not until you start seeing a downtick of this virus and not until we get more information around it. If it's absolutely essential that you have to get out for whatever reason, then taking all of those precautions, where you're wearing gloves, you're using sanitizers, you're using a mask, those are important things, but avoid that if you can, stay home, if you can.

Andrew Schorr:
Faith, I want to ask you this. You alluded to a much wider array of myeloma treatments than we've ever had, and myeloma is blessed as a cancer where there've been more and more approvals, more and more things. You're a myeloma specialist, Noopur is a myeloma specialist, not everybody initially sees a myeloma specialist. Would you underscore the point now maybe even more than ever that someone like you should be at least part of the team or consultation or consultation for your local oncologist, because this is getting complicated, and then you layer what is the truth about your immunity now?

Dr. Davies:
I agree. I always like to think about it as that triangle where we have an interaction between the patient, local oncologist and the myeloma specialist. And I think that as I was trying to allude to earlier, if one of the good things that's come out of this is us using technology. And I think that now potentially, we'll see what happens when all of this is finished, but the whole concept of doing remote consultations and using these kinds of technologies to talk to a specialist without actually having to travel to their particular town, I think is going to open up and be really important for myeloma patients moving forward.

Andrew Schorr:
Okay. Just a couple last things and thank you for your extra time with us, and folks, we will be doing consistent myeloma programs, and we'll have these wonderful ladies back and other myeloma specialists to share their story. First for you, Noopur, having lived with it, what would you say to people, your husband had a rougher go than you? At this point, you've had patients who've had variety of experiences. What would you say to people as we're learning? Because otherwise, it seems totally black, you have myeloma, the worst is going to happen, how do you position it for people and in your own life too?

Dr. Raje:
Yeah. General responses can be extremely difficult or different, and like I said, people can be completely asymptomatic like myself. So it's not as if just because you're COVID-positive, you're going to have the worst time ever. It's a spectrum, it's a disease we're learning about. What I think the future will hold, Andrew, is once we have more patients, we will be able to, as medical specialists, identify who are at a higher risk for developing those complications. And I think the critical thing there is going to be, do we need to intervene early in those folks, which is a minority by the way of people who have very significant complications from this, should we be intervening early? But until then, I don't think, I know this is a really stressful time in people's lives, a lot of it is because there's so little known about it.

But part of us having this discussion with you today is trying to inform people of everything we know and allowing science to direct our way forward. And I do think the one thing I'm so, so, so hopeful about is, we've seen COVID now for the last, is it eight or 10 weeks in this country? Something like 12 weeks, three months, and the amount of research which has come out in these last three, three-and-a-half months is absolutely unprecedented, right from how you test for this virus to the different treatments. And there are so many clinical trials happening in this space. So I'm extremely hopeful that we're going to learn so much more about it and that we're going to be able to get on top of it.

So I do think we just have to be a little bit patient and not everybody is going to fall really, really sick from this, in fact, it's the minority who fall really sick.

Andrew Schorr:
Noopur, it means a lot to be in this video program, is you where it's affected your family, yourself and your husband and your being a researcher and a clinician that you are calm, and you are upbeat. I think that says so much to us. So going forward, Dr. Davies, people worry about when to worry, so fever, different things. When do you want people to call, because Noopur was just talking about earlier intervention? What would you tick off for myeloma patients on when, if they're your patient, you want them to call?

Dr. Davies:
There was a big study that came out of the UK actually today looking at symptoms of COVID-positive patients. And yes, many patients have those ones about a cough, shortness of breath, fever, but also some patients have diarrhea and vomiting, and so GI-like symptoms. Other patients have had like a little bit of confusion and a little bit of just not quite—so I think for me personally, I would say that I would rather have a call to say that you're not right and then have this kind of discussion and take it forward from there rather than to come in at the background and say, "Oh, I wish you'd told me sooner."

And I think now that testing is much more widely available, that potentially having the call when you're not quite right and you're beginning to develop these symptoms so that you can then get a test and be informed about where to move forward from there, I think it's actually quite important. And I say that knowing that that's not what I would have said three or four weeks ago. Three or four weeks ago, I would have said, "Okay, if you've got a cough and a cold, stay at home for three days and tell me about it at the end of the three days." Whereas now I think we've got a bit more testing, we understand a little bit more about it. It may not be we'll do anything about it if you phone and say, "Look, I've got a cough in the cold, and I don't feel good," but it may be that we can at least arrange a test to find out how you are and where things are at.

Andrew Schorr:
Okay. I just want to get a final comment from you Faith while we have you there is, Noopur's I think upbeat, are you? Because again, I said there's been a cloud over all of us, And you in New York City and in Boston to ground zero. How are you feeling now about the future for us?

Dr. Davies:
I'm really very positive. I have to say, Noopur is an amazing lady, there's no ifs or buts about it. I don't know if I'd be quite so upbeat if I was in her position, but I think that we're now beginning to, we've been having meetings now about how we're going to get back to normal, how we're going to test people, how we're going to continue in normality. We never even thought about having those meetings two or four weeks ago. And as I said at the beginning, when we first heard about this disease, I thought all my myeloma patients were going to go down with it, and we were going to have some awful, awful times.

And I'm not saying it hasn't been awful, but I've been surprised about not how few, but many patients have either been asymptomatic or have had minor symptoms. So I think there is a lot of positivity that we can move forward with.

Andrew Schorr:
Okay. I want to thank you for your dedication there in New York City where I know it's been extremely stressful and people in close proximity. I have to just repeat a story; one of the doctors from another hospital there, when he comes home at night, he strips in the hallway of his apartment building before he goes in so that he doesn't bring anything to his family. So I know you've had to make all kinds of accommodations there in New York. And, Noopur, we wish you, I know everybody's saying to you, sending you all the best for your health, for your family, for your husband. We're delighted to hear that he's been recovering, it's several weeks as you said, and for you that things improve.

I want to thank both of you. We'll have more myeloma programs, we'll have these ladies back as we learn, as we learn. Dr. Noopur Raje, from Massachusetts General and in Boston, all the best to you. Thank you for being with us. Dr. Faith Davies, at NYU Langone in New York, thank you for being with us, and for your dedication to all of us living with these cancers. Thank you so much.

Okay. I'm going to let the ladies pop off and just give the rest of you information. We always have a replay of our program, share it with others. There's a transcript and certain actions you can take. And, of course, answers create more questions. So look for our continuing programs in multiple myeloma, and then it was mentioned about this American Society of Clinical Oncology meeting where yes, there'll be data about COVID-19 and myeloma patients, what these specialists are learning, and there'll be information about the newest and emerging myeloma therapies, and you can count on us for covering that for you.

All right. Thank you for sticking with us, I hope this has been helpful. I'm Andrew Schorr for Patient Power. We welcome your comments anytime, comments@patientpower.info. Remember, knowledge can be the best medicine of all.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Recommended for You

View next