Joshua Richter, MD
Interview Date: November 6, 2020
Thanks to our episode sponsor
COVID-19 is still a serious condition for multiple myeloma patients. With a 28% death rate for hospitalized myeloma patients, it is important that patients understand the latest. What have we learned? Dr. Joshua Richter of Mount Sinai shares important information about the status of myeloma care in relation to COVID-19, how patients can best protect themselves, if you should be getting IVIG, possible treatments for COVID, why you should go back to normal myeloma therapy whether you should take blood thinners and much more.
Jenny: Welcome to today's episode of Myeloma Crowd Radio, a show that connects patients with myeloma researchers. I'm your host, Jenny Ahlstrom. We'd like to thank our episode sponsor, Takeda Oncology, for their support of Myeloma Crowd Radio and for this program.
Now, you'll be hearing more about this soon. But before we get started on today's show, I just like to mention that we'll be continuing our Myeloma Crowd Research Initiative in the coming months and year by funding six studies in collaboration with myeloma researchers using the HealthTree platform to facilitate these studies. We're partnering with myeloma experts to answer key questions in myeloma research. For example, if diet or fitness affects myeloma precursor progression, which therapy combinations are working best in the real world for patients with specific genetic features, the role of transplant in the age of more myeloma therapies, our continued COVID study, and additional studies as well.
Our collaborators will include researchers from facilities like Roswell Park, Memorial Sloan Kettering, and many others. So we invite you to help us raise over $250,000 for these six studies and help us obtain a very generous $250,000 matching grant from a donor who has committed that amount. We'll continue to share this as part of Giving Tuesday, so you'll be seeing that shortly. You can find a Donate button at the top-right of the myelomacrowd.org website.
Now, besides our never-ending election results, I think we are focused as a nation on COVID-19 still. Dr. Joshua Richter joined us in March as the virus was just expanding across the country and gave us really a fabulous information about this subject. I think we're all feeling a little more seasoned on COVID-19 even as most of the country is seeing some surges. But our program today is all about what we've learned and what we should be thinking about and doing this winter season. So I want you all to think ahead about your questions. And if you do have a question, you can press 1 on your keypad and then I'll know if I can call on you at the end of the program.
So Dr. Richter, we'd like to welcome you to the program, and thank you so much again for joining us again.
Dr. Richter: Thank you so much for having me.
Jenny: Well, let me just give a brief introduction for you before we get started.
Dr. Joshua Richter is Assistant Professor of Medicine at the Tisch Cancer Institute at Mount Sinai at the Icahn School of Medicine and the Multiple Myeloma Division. Dr. Richter previously practiced at the John Theurer Cancer Center at Hackensack University and at Rutgers. Over the course of his career, he's led significant research on the development of new myeloma treatments including carfilzomib, selinexor, panobinostat, daratumumab, pomalidomide, isatuximab, and ixazomib. His research is also including immunotherapies, transplants, and optimal treatments for myeloma patients. He has many new clinical trials open. I continue to be astounded at the progress being made in myeloma. It's just stunning.
So some of his current trials including ALLO CAR T trial, many BiTE trials, and we were just talking before the show started that he has three BiTE trials running with three different targets, an MCL1 inhibitor, specifically for 1q gain patients and just many others. I believe Mount Sinai has had the largest number of COVID cases in the nation. So you are just the perfect person to join us today for today's show. Thank you again so much.
Dr. Richter: Great.
Jenny: Well, let's go ahead and get started. So as you look over the last seven months, I guess, the big question is, what have you learned?
Dr. Richter: So I think that's a great question. At the same time, we've learned very little, and at the same time, we've learned so much. So we do recognize that there are certain risk factors that myeloma patients do have if they were to become infected with the SARS-CoV virus. Ultimately, the still major recommendation is prevention. An ounce of prevention, a pound of cure - it's still kind of our mantra is to avoid getting it because, unfortunately, myeloma patients, as opposed to patients who have other types of cancers, have compromised immune systems, not only from the treatment but from the disease itself. So unfortunately, people who do have myeloma who do get Coronavirus and are sick enough to be admitted to the hospital, unfortunately, do have a higher risk of having serious complications and even dying from it.
Some of the biggest risk factors have to do with the disease or the degree of immune compromise, and this has to do not only with how advanced the disease is but by what we call an immunoparesis. Immunoparesis really means the lowering of immunoglobulins or the paralyzing of the immunoglobulins of our immune system. Probably the most important immunoglobulin is IgG. In fact, many people listening will have IgG myeloma because it's the most common type of antibody produced, and therefore the most common type of myeloma.
As this gets lower and lower, people become at risk for infections, and some people may actually receive intravenous immunoglobulin or IVIG to help during these winter months to prevent infections. As this starts to drop and get below 700, we worry about increased risk of infections. Below 700 was not a predictor for worse outcomes with Coronavirus. It's actually severe low immunoglobulins, below the level of 400. So one of the things that we really try to do is make sure patients continue to have immunoglobulin levels or IgG levels above 400, especially as we're going in to some potential rising cases. We are adamant about getting people influenza virus vaccines for a variety of reasons, not the least of which is to prevent flu and any potential need for increased interaction with the healthcare system. The last thing anyone needs is to have to be admitted to the hospital during any wave of coronavirus.
So very much encouraging flu vaccines, potentially IVIG for patients who have severe we call hypogammaglobulinemia, very low immunoglobulin levels, continued recommendation of social distancing. Depending upon where a patient is in their disease course and geographically located, we're still for some patients utilizing all oral regimens to minimize the risk of contracting coronavirus from interactions with the healthcare system.
Now, it's not universal. There are certainly patients who continue to receive intravenous therapies. But especially as we go into cold and flu season, we're trying to be proactive instead of reactive in terms of which patients are better off on an oral regimen perhaps for the next few months, which patients who are in the proceedings of either stem cell collection or stem cell transplant should proceed, and which ones should delay. Ultimately, if patients are infected with the Coronavirus, we do have a number of therapies is probably the best way to approach it.
As we talk about, Coronavirus really has three different phases when it interacts with people. The first one is the viremic phase, so the virus replicates, and that in and of itself can cause fever and to feel quite ill. The second phase is this inflammatory phase, almost like a cytokine release that we talk about with CAR T's. In that phase, we can use some of the therapies we use for CAR T's when patients get CRS, things as simple as dexamethasone and other steroids to more complex drugs like tocilizumab. And then, unfortunately, we're seeing after effects. People who are clear of the virus but still have chronic shortness of breath, diarrhea, other mild organ dysfunction, which can have significant impacts. So we're really trying our best to minimize the impact on all of our patients.
Jenny: Well, that's a great overview of everything that you're trying to accomplish for those patients. Can I ask some follow-up questions?
Dr. Richter: Of course.
Jenny: When you were talking about the IgG, you were talking about that it needs to be above 400. So are you suggesting IVIG if it's below that number?
Dr. Richter: So it's definitely a case-by-case basis because IVIG in and of itself is kind of a blood product of sorts or immunoglobulin collection of sorts. There isn't a wealth of herd immunity out there yet. So IVIG in and of itself is not likely to protect against COVID. However, we do find that people who are infected with COVID who have an IgG less than 400 seem to have it more severely. Not to mention there's, unfortunately, from recent studies about a 2% co-infection rate. So it's not as if having Coronavirus means you can also get the flu or another virus or vice versa. So because there are a number of people who will get multiple viruses, that IVIG will directly be able to help with some patients we have been giving them.
Jenny: So interesting. And then you talked about risk factors, that myeloma patients have compromised immune systems and these immunoglobulins and things like that. But what have you learned also about comorbidity type risk factors that would make a myeloma patient even more at risk that they should really watch out for whether it's the heart conditions or diabetes? I mean, really what data has been discovered in the last seven months?
Dr. Richter: Sure. There's some slight study will have some slight differences, but the main risk factors that seems to be sure across the board are cardiovascular risk factors. It's kind of a general thing. Obviously, things like prior heart attacks, coronary artery disease, and congestive heart failure seem to put patients at extra risk. Chronic renal insufficiency has borne out in some studies, less so in others. Unfortunately, age also continues to be a risk factor in some as opposed to others. One of the ones that we can measure is the body's response to Coronavirus in terms of immunity. So we have some data, and it's a little bit conflicting. But at the time of admission to the hospital, we can measure the inflammatory markers that a patient has, things like Interleukin-1, Interleukin-6, TNF alpha. These are all chemicals that the body releases that kind of drives inflammation, and people who have these inflammatory markers sky high seem to be at higher risk.
Now, ultimately, with almost everything, there's a Goldilocks Zone. Too little immunity and the virus kind of runs rampant and a body is not able to fight it off and people get very sick. Too much immunity and the inflammation itself can become a problem. So we're really trying to hone in right into that Goldilocks Zone where we have just enough to help fight off the disease without causing other issues.
Jenny: So when a patient comes in and you see these high factors like IL-1 or IL-6, TNF alpha, do you treat them in a certain way because they have high levels? So you're not waiting for the cytokine storm to happen? I mean, how do you deal with that?
Dr. Richter: It's a great question. And to be honest, we're dealing with the exact same things with bifunctional antibodies and CAR T's from myeloma. It's a question of if we see a little bit of it, sometimes we don't want to squash it down. So we're lucky enough now to have specific antibody drugs, so drugs like anakinra that specifically blocks IL-1, or tocilizumab and siltuximab that block IL-6, infliximab that blocks TGF beta, TNF alpha. We have all these great drugs, so we make a clinical decision at the bedside. If these markers are up a little bit but seem to be getting the job done, we don't blunt them. But if they're signs and symptoms of respiratory compromise or other compromise from the high inflammation, then we target it.
Dr. Richter: We're doing the same thing for the bifunctionals and the CAR T's for myeloma. So I saw a patient recently who we gave a dose of a bifunctional antibody, and their markers rose steeply and along with liver function. We decided we don't want to squash this down because it's squashing it down means you may be suppressing the T cells that are activated and fighting the cancer. So we kind of watched this time, and it just came up and down by itself. So it's really this is becoming the -- we joke about it, but it's the art of medicine.
Jenny: Yes, you have a lot that you're factoring in as you consider these individual patients. So you mentioned dex. I know dex has been used. I think the NHS study that they did, they found that that was one of the only drugs that did reduce responses for patients who had received oxygen or been on a ventilator. I have a question about dex. Earlier in use, you were talking about T cell function where you're watching the T cell function because you want this powerful T cell function. What drugs -- and maybe dex is one of them -- what drugs have an impact on kind of depressing the T cells, I guess? I had asked this of other doctors in the context of CAR T, like wanting to have this solid T cell function as you go into a clinical trial or for CAR T, or you think about when these are going to get approved. What other myeloma drugs might depress the T cells? So does it have an impact, or is that just a CAR T question?
Dr. Richter: No, this is a question that's being explored very heavily right now. So some of the bigger drugs that we know affect T cell function are a lot of the classical chemo drugs. The drugs like melphalan that we use for transplant, drugs like bendamustine can affect T cells. There are some regimens. Some of the IMiDs actually can augment T cell function. There's actually some literature coming out now. By literature, these are not, unfortunately, very well studied phenomenon but case reports. We're trying to know what this means about continuing people on drugs like Revlimid or like Pomalyst to help augment T cell function during the period of COVID.
Now, this is we're talking about single, double, two or three to draw any conclusions from it, but it's very interesting. So both in the CAR T cell context where we want T cells to be really functional to fight off the myeloma. In the COVID sense, the question is we want them in a certain range. We may be adding a little dex when it's too much and potentially adding some other drugs when it's not enough. So it's actually becoming more and more complicated.
Jenny: It sounds like it. What's your experience been with your hospitalization rates for COVID and especially for myeloma COVID patients? What are you seeing now?
Dr. Richter: Generally, across the New York area, the numbers are up. Myeloma patients with COVID have not been up, not like they were back in March and April. So knock on wood. I'm currently running in the hospital. So the numbers of patients admitted with COVID is still extremely low for myeloma. We're very glad about that. It's interesting, one of the things along the lines of what we've learned, not just that drugs like Revlimid may augment things, but there's still an ongoing global study looking at selinexor as a direct treatment for COVID and that selinexor, which is approved for myeloma in July of last year, turns out that it can actually help fight COVID from two of those standpoints we talked before. Selinexor kills myeloma cells by blocking the trafficking of proteins in and outside of the nucleus of cells, proteins that are when our body finds a cancer cell and it targets it, it says you have to go commit suicide. There's a cascade of proteins and elements that happen within the nucleus and the cell dies. The cancer cell survives when it decides, you know what, I'm going to kick these proteins out of the nucleus and I'm not going to die. Selinexor actually blocks that, traps them in the nucleus and the cell dies.
Well, not just cancer cells but viruses survive through protein trafficking and selinexor may have a benefit there. Selinexor, by affecting steroid receptors inside the nucleus, actually can affect inflammation. So there may be a two-pronged effect for patients with myeloma and COVID. This may be a drug we may want to use more and more if needed.
Jenny: I know everything's happening in an accelerated pace in terms of development of a vaccine and using treatments like this. So I guess there's the prevention with the vaccine development, and then there's a treatment like you're saying with tocilizumab or dex or selinexor during individual cases. Will the treatment kind of related drugs be faster, or do you think the vaccines are headed on a faster path, or that just doesn't matter and they're going both arms moving full steam ahead?
Dr. Richter: You can follow this along much in the same way that our race for more therapies in myeloma. We have one group of people looking at CAR T's, one looking at new pills, one people looking at cure, one people looking at treatments. I think the same is true for COVID. There's a couple of vaccines. Luckily, there are many companies working on them. The Janssen and Moderna and AstraZeneca ones are moving along quite rapidly, which is extremely exciting. Actually, within the last week and a half Moderna actually fully accrued its study. So the likelihood is that a vaccine is going to be coming relatively soon.
Now, everything's in context. Years ago, the days before COVID, vaccines would take years to happen. So everything is on an accelerated pace, but depends upon the context is the day that the data proves out to be great, the vaccine is not going to be available that day. The vaccine then has to be filed with the FDA for approval. The FDA then has to do its due diligence, approve it, then the company has to manufacture it and distribute it.
The one thing that I could not be more excited about, one of my former professors when I was in fellowship at Yale was a guy by the name of Peter Marks. Peter Marks is currently the Director for the Center for Biologics Evaluation and Research (CBER) at the FDA, and he's basically, if you google his name, he's the final guy before a COVID vaccine will get approved. I can tell you from working with him for a couple of years, there is no better human being on the planet to be in charge of this.
Jenny: That's wonderful.
Dr. Richter: He is apolitical. So he is the type of person that will only release a vaccine if it's good. He's not going to be pressured by anyone to release anything. He is the type of person that if things are fishy, he will put a stop to it. So for whatever it's worth, one of the best human beings on the planet is at the forefront of this.
Jenny: Oh, that's wonderful to know. No, I think that gives people confidence because to have experts like that, being in these kind of power positions, I think, is really crucial, especially during such crazy time. That's awesome.
Dr. Richter: So if I had to take a guess, it's a little hard to say, I think the likelihood is the data will be ready to go within the next probably couple of months, maybe even sooner. So I would hope that we would have a vaccine by quarter one is 2021. Exactly when, a little hard to say and exactly -- then it becomes the issue of distribution. So they make the first 100,000 doses, who gets it first? Unfortunately, there are a lot of issues with that. The other problem is depending upon when it's approved, manufacturing has to occur and if it's manufacturing plants that are in places of high Coronavirus, it has to be manufactured with significant social distancing, which may slow things up a little bit.
Jenny: Yes, a lot of different measures that have to be put in place. Well, go back a little bit, because when you talked about what patients should be thinking about in terms of their myeloma care - now when the virus first hit, I know people were spacing things out, things like you had mentioned, daratumumab that you could space it, going to more all oral regimens like you mentioned earlier in the show, and holding off on stem cell transplant. It seems like a lot of myeloma doctors have gone full steam ahead back to stem cell transplant. I know some of the trials were shut down. Maybe you can kind of explain, now that we've had a little more experience, what's happening in the myeloma clinic? And should patients be going back full steam ahead, all your labs, and everything? Or what other things should you be thinking about, just practically speaking as a myeloma patient, around COVID?
Dr. Richter: Absolutely. So right now we are full steam ahead. Again, this will differ for patients depending on where they are geographically, but at least in New York, we're luckily in a position with relatively low rates that whatever is our generally recommended procedures were proceeding with. All of our trials are open to accrual, including all of our CAR T's and bifunctional antibodies. Patients receiving regular infusions and stem cell collection, stem cell transplant is moving forward. I think, at the moment, stem cell transplant is actually quite a great way to go because for most people, post-stem transplant involves quarantining at home away from people. And if we're already going to be quarantining at home, you're really not going to be missing anything. Now is probably a good time to do that.
The other reason why it's worthwhile to be full steam ahead now is we don't know what the future holds. So going into any potential bigger waves in a deeper remission is to everyone's advantage because some people's myeloma, when you back off on the therapy, shoots up quite quickly. But for many people, you could go weeks, months, or even years without therapy when things are quite low. So making sure that our pedal is to the floor at the moment will mean that if in a month or two or three things are bad in certain areas, we can more easily back off and allow people to be off therapy for a bit. Even if their M spike goes from 0.2 to 0.3 or 0.4, they're still not going to be in the danger region.
Jenny: Well, this is a really important point that you're making because I know that some of the doctors were saying, gosh, now that people were told, hold off, don't go in, or don't get the treatment you need, or space things out or whatnot, just out of an abundance of caution, a lot of doctors are saying now, okay, I'm seeing more bone damage. I'm seeing deeper kidney failure. I'm seeing other things that are more concerning to me than COVID. So what you're saying is just emphasizing that point.
Dr. Richter: Yes, absolutely. I think one of the things that we, unfortunately, all learned and that people do learn with myeloma is that it's a little hard to predict the future sometimes. I think we got all surprised when this all came up last time. Now that we're a little more prepared, we're really trying to make preparations for things. For example, there are people that I'm doing stem cell collection on right now. My comment to them is we're going to get your stem cells collected, and we're going to sit down after, and we're going to take a look at your life, what the world looks like. We'll make a decision together. Is doing transplant right now going to make sense? It may make sense in November. It may make sense in December. It may not make sense in January. We have to wait and see.
Jenny: Well, I like what you were saying because I think myeloma patients out of all, especially those who have had a stem cell transplant before, they understood what masking and social distancing is all about. I remember wearing a mask every single time. I'd get on a plane or go outside or anywhere right after my transplant. So I like what you're saying, that it's actually a really good time to think about that because you're trying to stay away from people anyway. So I think that's a good idea.
Now, you mentioned vaccines like the flu vaccinations. Maybe we want to talk about that because I know in past years, I've seen data showing that you should even get boosters for the flu vaccine. Myeloma patients might not hang on to that protective nature of one flu shot, so maybe you consider doing that. Then do other people in the family need to get that, the family members, caregivers to help protect the myeloma patient? What's your suggestion there?
Dr. Richter: I think your points are extremely well taken. Part of the concept of herd immunity is making sure that as many people as possible are vaccinated because that's what really stops the spread. Although there are some conflicting data about whether or not getting an extra flu shot is worthwhile or not, I've definitely heard that but unclear that that is of any benefit because it's really based on the immune system yourself, not per se the inoculum. So at one point in time, it may. At one point in time, it may not. The way I always describe vaccines to people, vaccines are like flowers you plant in a garden. Part of this is not just the seeds you put in but the soil you put it in. If, for example, three weeks after your stem cell transplant your bone marrow is not ready for this, so it's like going to take your beautiful, expensive seeds and planting them in a desert, they're not going to grow. They're not going to give you the immunity you need because of the soil.
So part of this is where your immune system is at. But all else being equal, if there's no contraindication getting a flu vaccine, everyone should get it. This year now more than ever, we want to protect those people who are most vulnerable to any virus -- COVID, influenza or otherwise. Again, these viruses can travel in packs. So people can get the flu and other viruses at the same time. So to minimize the impact it has on everyone, yes, everyone should get it.
Jenny: Someone else was saying that all this mask wearing is actually protecting them from getting other things that they might have gotten just in a normal winter or fall season like the flu. So some of that definitely helps. I think we're all paranoid because every time we start sniffling or get a sore throat, we're like, "Oh, it must be COVID," and we're going to get tested. I think the more you can do to kind of rule some of those things out, the better and more peace of mind you'll have too.
Dr. Richter: Absolutely. I think the one thing I would say is that I think myeloma patients in general are the pure definition of resilience for everything that they go through. I think that's the catchphrase that we're looking for now. I think from February and March until now, it's been a rough ride for many people, some way more than others. Now is not the time to get lax about mask wearing and social distancing. The difficulty is we're about to head into what for many people is a wonderful time of year with family and get-togethers. It's difficult, and this is a situation you should talk about with your own healthcare team. But for some people, this may not be a year to get together for Thanksgiving with everyone from all over and expose each other to things. It's exceedingly difficult. It's quite complex. But for many people, distancing this year will allow family get-togethers for every year in the future.
Jenny: It's hard, but maybe it's the time to develop new traditions as well. Instead of getting together with the entire extended family, you do something with your own family and build a new tradition.
Dr. Richter: Absolutely.
Jenny: I don't know. There's always an opportunity. Let me ask about the COVID vaccine once it's been developed. I know that you look at the high-risk people, and hopefully they would get a vaccine first or be prioritized. With a COVID vaccine for myeloma patients, would it stick, basically, is my question? Would they preserve the antibodies that their body would develop? I guess we have no way of knowing this until we have a vaccine that we can actually test on people. But just knowing your research on immunotherapies and how the immune system works in myeloma, because it's so involved with myeloma, what do you think?
Dr. Richter: The best target we have is a study that we published looking at our own patients who did develop COVID antibodies and keeping track of them. The reality is that many myeloma patients are able not only to mount an antibody response but hold on to it for some time. Now, the devil is in the details. How high do those antibodies go? How long do they last? And if there are multiple strains, is it able to cover all of them? So it may be -- and again, one of these I also am not sure that we know yet is whether or not this is going to be cyclical, or this is going to burn itself out and be just that. So it may be that patients who have suppressed immune systems with myeloma or other reasons may need to consider boosters or additional vaccines several months down the road. Again, now that we have the ability to measure antibodies, we'll be able to have at least a better idea of who is mounting a response to keep an eye on it.
Jenny: Definitely. So the different strain thing that you brought up, are you seeing different strains? Is there a way of testing that? Do you have a way of testing that? Are you seeing different strains, if so?
Dr. Richter: Our testing in general clinical practice, we do not differentiate between the different strains. They're doing that in our infectious disease lab, and they're looking at that at higher levels. But for patients in a clinical standpoint, they come in with symptoms, and we're checking them with the nose swab, spit test, or blood test. It's just looking for the antibodies of the virus itself. It's not really speciating out the different strains.
Jenny: Okay, good to know. I've heard a little bit about convalescent plasma. Do you have any experience with that in treating COVID for myeloma patients or any patients?
Dr. Richter: One of our myeloma nurse practitioners, Donna Catamero, was instrumental during this time in providing convalescent plasma to patients. The difficulty with any of these tests is there's no comparator. We don't have a trial where we randomize people who are matched in terms of how sick they are and their comorbidities to getting plasma -- or not getting plasma, to getting a vaccine or not, to getting remdesivir or not. So we see people improving on these therapies like convalescent plasma, but they may have gotten better all on their own. So it's really, really difficult to interpret any of the data for the studies. I don't think that people are lining up right now to get a randomized study between a placebo and a vaccine. But, ultimately, that's how we know in science, it really makes a difference.
Jenny: Yes, that will be interesting to see how that vaccine gets rolled out.
Dr. Richter: It's going to be rolled out simply from -- what they do is they give a vaccine and a couple of weeks later, they check to see if you have antibodies. So the difficulty is what level of antibody is needed? And exactly, just to point out, as a myeloma patient, which is our primary importance to us, how are you going to be able to make antibodies? How much are you going to make? Is that going to be enough? How long are they going to last? So I think for our population, we may need to be even more hypervigilant and measure antibody. So I think in the general population, people are going to get the shot and go on about their day. It may be that myeloma patients need to have periodic checks of their levels of antibodies.
Jenny: How long are you seeing those antibodies last in your patients?
Dr. Richter: We don't have any long-term data. We followed a couple people for a little while, but we don't have really long-term data. So some people have maintained it the entire time. So they were infected in February or March, and they still have antibodies now. Some people don't. But that also is affected by the therapy you get. So you may have therapies in April or May, and then you may get a treatment that may suppress your antibody producing cells, and in June you may not have the antibodies.
Jenny: Well, that's something you just have to talk to your doctor about to have them keep an eye on that. That's so interesting.
Dr. Richter: Absolutely.
Jenny: So one other factor that I've heard people talk about is vitamin D levels, that the patients who are with COVID having higher or more extreme kind of scenarios have load of vitamin D. I heard one of the myeloma researchers say that just in general, over 75% of myeloma patients are typically low on their vitamin D. I never had asked for my vitamin D level to be tested until this last time because I was just kind of curious. I'm taking daily, a lot of vitamin D. I'm still low. So should patients be asking for this lab to be run? Is vitamin D as important as we're hearing in the press that it might be? What's your opinion for myeloma patients?
Dr. Richter: Sure. So everyone, myeloma or not, doesn't have as much vitamin D. Part of that has to do with our origins and our current lifestyle. The human being or human body, however you think it came into existence, is designed really to sleep in a cave when it's dark out, sleep on a rock or dirt, not on a Posturepedic, so to get up on the light season. You go outside no shoes, no socks. You hunt and gather out in the sunlight. And then when the dark comes, you go back in your cave. We're not really designed to stay up all night on Facebook and Twitter, walk around, sleep in fancy beds.
So the reality is the majority of people in this country in this world are actually vitamin D deficient. It has an impact on a variety of outcomes, including myeloma. Vitamin D is very, very important. I think it can be difficult when you're coming in to a visit and you're so focused on the disease itself and the chemotherapy. But your point is extremely well taken. We check our vitamin D levels on our patients every three months as a matter of course. Everyone gets it every three months. Most people need supplementation. Myeloma patients especially need supplementation. If you have any renal compromise, you need even more supplementation. Supplementation is oftentimes front loaded by getting something like 50,000 once a week, and then more of a maintenance after that, somewhere between 2,000, 3,000 or 4,000 or 5000 a day. So if patients haven't been checked for this, they should absolutely bring it up to their healthcare team. Again, hard when you're coming in and disease is getting better, disease is getting worse, but especially when things are okay, absolutely check the vitamin D.
Jenny: Yes, well, I had never considered asking for that before, and my facility just doesn't ever check it. So I requested it and they added it and that was really interesting to know. So patients might need to just ask their doctor to run that additional test. I don't think it's that expensive or anything. So easy add to your labs.
Dr. Richter: It costs less than one pill of Revlimid.
Jenny: Okay. Well, there you go. Well, let's talk about telemedicine for a minute because I know one of the advantages that COVID has given us that's an opportunity that we had never had before as patients is to get second opinions via telemedicine or even talk to our doctor via telemedicine. I've had several telemedicine consults with my doctor here and had mixed experiences, I guess, getting telemedicine at other facilities. So can you explain the waivers that were put in place and then what you're seeing happening now?
Dr. Richter: Sure. So unfortunately, a lot of this comes down to insurance coverage whether or not an opinion is given in person, over telemedicine or not. There was a period of time at the height of this that, unfortunately, medicine, our board approvals, our licensure is state based, not federal based. So at the moment or under normal circumstances, I'm licensed in the state of New York, so I can't provide medical care to someone in another state. During the height of COVID, states were allowing a whole bunch of leniency to allow the practice to occur outside of state. Now, because the rates are lower, they're cracking down on it. However, I and many other physicians have augmented our state licensure. So I think I'm now licensed in New York, New Jersey, Pennsylvania, Florida. So this allows people from those states to telemedicine in.
It can be quite complex and every position and institution may have different policies. I think all of this being equal, telemedicine is a great thing for many patients. It has its drawbacks. I think you miss something over the phone or over video connection you can't get in person. I think it's an odd thing to wait for someone on telemedicine. I think we've all had that experience of waiting in the doctor's office, and there's some activity and you can see, this person was there before me. I'm next. But when you're sitting at home with a phone that's blank, did they forget about me? What's going on? Sorry, we didn't forget about you. It can be harder because some people may not be as technologically savvy, which can impact things. But all of this being equal, I think this has really ushered in a new wave. Even in a post-COVID world, I think telemedicine is here to stay.
So for myeloma, much of what we do is based off of bloodwork and discussions. Bloodwork can be done almost anywhere. So for a lot of patients, I think regardless of what happens in the future, we can send you a script, you get bloodwork done at your local Quest or LabCorp. But we actually have a mailing system where you can bring several mailer kits. That patient can call the number. They send tubes to you. You bring it to your primary care physician. They'll draw it. It gets sent to our lab for processing. We hop on a phone call. We have a discussion, especially if you're receiving local treatment and just an opinion from a myeloma center. So I think it's really here to stay. So maybe one of the silver linings come out of COVID is the ability for people to go to any one of many myeloma centers to get second opinions without having to travel great distances.
Jenny: Right. And to me, in the age of COVID, when you are probably immunocompromised anyway and you might have additional comorbidities, the idea of hopping on a plane and then going to that appointment to get a consult from a true myeloma expert, which we highly advocate getting, especially when you're making decisions about your care or changes to that care, the idea of doing that during a COVID lockdown is not appealing at all. So when I heard that some of these waivers are being pulled back or that it's by state, it's not even -- like there's no master list you can go to to say, okay, this provider provides telehealth and this doesn't. Is it a payer thing? Is it an insurance issue?
Dr. Richter: It's all of it. It's a payer thing. It's an insurance issue. It's an institution issue. It's a state licensure issue. It's still beyond my comprehension because if someone across the country is getting treatment locally and that person and I are having a conversation and at the end of that conversation I get on the phone with their local physician and say, "I think we should add daratumumab to what we're doing," I really don't see why that should be any liability issue, payer issue. I'm lucky to be at our institution. They are extremely supportive of all of these things and the realities were essentially always able to find a way around it.
I helped to manage a few patients, actually, in other countries. A young gentleman I helped to manage in South Africa, that we figured out ways so that, you know, granted he has to get on the phone at some crazy hours to make it work, but we can always figure out a way.
Jenny: Well, it's just so valuable for patients. I guess, if I'm going to get on a plane and come see you in New York, it doesn't make any sense that you couldn't cross state lines in the first place. So I guess, it makes you question why this law exists in the first place. I can understand it for certain conditions where you have to, you know, I have to do a physical exam or things like that. But in in certain conditions, you don't. There's a lot you can learn by even watching somebody on a screen and looking at their lab work. So I wonder how myeloma patients can better advocate to keep this as we go. Because when we did our COVID study, we had 1,100 patients join that study. We asked the question, how many of you did telemedicine prior? It was about 10%. And then we asked, how many of you are doing it now? And it was 60%. So patients do want to take advantage of it. Do you have any suggestions about what we can do as patients to make sure this does stay?
Dr. Richter: Unfortunately, because there's no one overseeing body in the state licensures, unfortunately, I think are not likely to get together and grant universal approval, although it never made sense to me. I can understand why it's that way for lawyers because law is different from state to state. It's not like you have daratumumab in New York, and we go over to Connecticut and, no, we don't have that, we have a different drug. So I never understood why statewide anyway.
Unfortunately, I think for the moment, we need to see where the dust will settle. I'm hopeful that it's one of the silver linings. This has put the benefit of telemedicine into the minds of many institutions. I can tell you this for one, Mount Sinai is really embracing this. So we're working on several initiatives right now to help not only keep this but expand the capabilities. So to connect people in areas that are not able to easily go to a myeloma center so that they can work with their local physicians and us to really help provide that care. It's exactly as you said. If you're coming to see myself, any of my colleagues, any of the myeloma physicians in New York or at any of the other great institutions, you're not coming for us necessarily to do a procedure, although sometimes a bone marrow biopsy is necessary. But outside of that, almost everything can be done locally and then have a conversation about the data.
Jenny: Right. And because myeloma patients, I would say, 80% of myeloma patients are being seen in the community oncology setting But we're making decisions all the time about our care, in terms of relapse, or what do I do next? What's coming next? What clinical trials are out there? I mean, you're running so many interesting clinical trials that it's just, I don't know, I'm a huge advocate for it. We just need to make that process easier on patients. I'll get off my soapbox.
Dr. Richter: No, no, no, I couldn’t agree more. Unfortunately, I've always talked about the Goldilocks phenomenon with things like COVID and myeloma. I also, unfortunately, have the Goldilocks amount of knowledge, which is I'm not smart enough to fix it. I'm not dumb enough to say that's fine. I'm just in the right amount to know that it shouldn't be this way.
Jenny: Well, I guess I'm there with you because that's what I feel about it too. Okay, let's just talk about a few other things before we open it up for questions. And if you want to be thinking about your questions, you can call 347-637-2631 and press 1 on your keypad so I know that you have a question. What do you suggest as we head into winter that myeloma patients do in terms of their fitness status? Because I know we have a lot of other things to think about. We have general fitness. We have mental health. We have all those things to think about.
Dr. Richter: I will say all of the following with a caveat that I am not doing as many of these as well as I ought to. I don't want this to be do as I say not as I do, but at least recognizing the difficulty that lies with all of these. What I always say is three principles of healthy living apply to myeloma or anywhere else: eat well, sleep well, and exercise. These are things that are universally true. I think all of us, I know myself, I'm very glad that this is over radio and not over video as I've put on more than the COVID-19. So I think when we're all bundled up inside, not exactly happy about not being able to do everything we want to do. Eating healthy, having healthy snack. I begrudgingly had an apple today as a snack instead of chocolate, which I'm not happy about.
Jenny: Good job :)
Dr. Richter: Sleep is very important. I think we all don't sleep as well as much as we need to. I think communicating with your care team that if your dexamethasone is causing trouble and you're not sleeping, there are ways to help it, both things like exercise, limiting caffeine, sleep hygiene, sleep hygiene meaning not sleeping during the day, not spending time in bed unless at night because your body loses those cues to sleep. But, ultimately, some people need medication to help sleep. No, you're not addicted to that if you need it. Sleep medicine and pain medicine for people with myeloma is akin to cholesterol drugs and aspirin and blood thinners for people who have heart disease. It's a medicine. It's there to help you. It's not a question of addiction. It's there to help. So make sure you're getting the three.
Exercise, easier said than done even in the best of times. Really, in general, practicing low and no impact exercise for myeloma patients is optimal, things like stationary bike, walking, swimming. Some of these things are not always so easy. Avoid extreme heavy weightlifting would be a good one. There is something that I saw on YouTube during the height of COVID, but I do not recommend it. I've seen several people in their kitchen where they put oil on the floor, and then they kind of turn it into a pseudo treadmill by holding on to the counter because you can kind of walk on the oil. But I don't suggest that because you could fall and break your hips, so don't do that. But trying to find creative ways to exercise, even things like Tai Chi, yoga. I think all of that is really good for mind, body, and soul.
Jenny: I agree. In March and September, we do a 30-day fitness challenge. We had over 700 people join in September. We just got so many comments about how, oh, I wasn't going to work out today, but I didn't want to miss a day on the challenge. So create challenges for yourself, I think, over the holidays with your family or your friends. I mean, I think you can do things virtually too that even if it's just stairs, going up to an apartment or just walking out in the neighborhood if you're able to, even in the cold. Just wear a coat and really good boots is going to be important for patients.
Dr. Richter: Absolutely. My mother does remote Zumba. I mean, the other thing I would recommend is anytime you're physically exerting yourself, make sure you stay well hydrated. I think it can fool people, well, it's not 100 degrees sweating so I'm not losing water. But every time you go outside and you see your breath in the air, that's you losing fluids. So really making sure you stay well hydrated, especially when you're overexerting yourself.
Jenny: Really good point. Okay, well, I would like to save some time for caller questions. So if you have a question for Dr. Richter, you can call 347-637-2631 and press 1 on your keypad. Go ahead with your question.
Caller: Hi. I have more of a comment than a question. Thank you, Dr. Richter, for all your valuable knowledge and, Jenny, for doing this talk show. I just wanted to talk about the Ig. My immunologist started me on subq IV infusions a few months ago, and it's something I give to myself at home. It's been very effective in raising my levels up to an almost normal rate. So my oncologist did not know about this. So I just wanted to tell the listeners that this is an option is to do subq home infusion instead of IV.
Dr. Richter: That is an absolutely wonderful thing. I'm so glad you did it. I think the fact that your oncologist didn't know is actually completely par for the course. Mount Sinai has brought to us several options. So we are absolutely in the same boat right now, exploring home infusions. This, again, one of the upsides of COVID may be the exploration of home infusions for things like IVIG. You could imagine that people who receive subq dara not going to want to give the first couple of doses, but if you're steady on it, looking into ways that that may be able to be given at home, things like Velcade at home, these are things that are in the works. So the IVIG one is absolutely there, and that's set up. But we're even starting to look at the potential for home infusions of medicines once you're stable. So whoever calls in, that's wonderful. In your experience, I'm so glad you're able to get it at home. The fact check that your oncologist didn’t know, he's in good company.
Jenny: Yes, great comment. Thanks for giving us the tip. Go ahead with your question.
Caller: Hi. I guess I have a question more for -- so we're not in a big city, but we're not in a small city. If God forbid, you get sick with COVID-19, what suggestion should you be making either to the ER doctors or the doctors who may be taking care of you at the unit? I mean, they may not be dealing with a lot of multiple myeloma patients.
Jenny: Good comment.
Dr. Richter: That's a really, really great one. I think that that issue is we deal with even not during COVID times, when people who are treated locally but come to a myeloma center when they get sick. Should I go to the local center? Should I go to the academic center? I think you should let them know you have myeloma. You should have on your person your card for your treating team. You should tell them, please call my myeloma care team as they may be able to help guide things. Because you're absolutely right, the ER will know all the immediate things to help manage your COVID, but there may be certain things to do or avoid in that setting. So I think the biggest thing is to tell them, please call my care team and all of us are ready. We already received these phone calls in terms of when to give blood thinners, when not to give blood thinners, when to give transfusions or dexamethasone. So that would be the biggest recommendation.
Caller: And also, part of the treatment, I'm on dexamethasone, so I guess the question is they say not to start it early, but it's already part of the regimen. I mean, how do you deal with patients that way?
Dr. Richter: So that's a really great question. So there's been several organizations that have made a recommendation of -- most people take dexamethasone once a week as part of their regimen. Because dexamethasone can suppress fevers, the current recommendation is checking your temperature right before you take your dex. This way, you make sure you're not masking a potential fever from something like Coronavirus.
Jenny: Interesting. Great. Well, great questions. Thank you, Dr. Richter, for your answers. Appreciate it. We have another caller. Go ahead with your question.
Caller: Hi, Dr. Richter. How are you? It's good to chat with you. Thanks so much for doing this.
Dr. Richter: You are always causing problems.
Caller: I know. Thanks so much for doing this follow-up call. I'm sure you knew I'd be calling in.
Dr. Richter: Absolutely.
Caller: Dr. Richter, what would your recommendation be to a patient who, whether it's an MGUS patient or a smoldering patient or a myeloma patient, who thinks that they may have been exposed to someone with COVID? Should they wait a few days to go get tested? What advice would you give to us?
Dr. Richter: I think that's a really great one, and I think this is something that we're all struggling to kind of navigate because the incubation period is not the same for everyone. Someone would, unfortunately, cough on you who has COVID and you go get tested right away, you're not going to have enough virus replicating in your body to show a positive. So unfortunately, I think you'd have to wait at least a couple of days. What a kind of rough estimate here is three to five days is what we've been telling some of our people who have been potentially exposed with the understanding that you remain asymptomatic within those three to five days. So if four days after you haven't been tested but now you have fever and a cough, you should go get tested. Other than that, I think three to five days is appropriate. Depending upon the level of suspicion, some people may even need to get tested again the following week given up to potentially 14-day window of incubation. So there's no hard and fast rule, but at least if you think or you suspect that someone may have exposed, generally the first test in three to five days as long as you remain asymptomatic, earlier if you develop symptoms.
Caller: Okay, great. Which test would you recommend that they get? The swab, the PCR swab, or I think, don't they have new -- I mean, there's all sorts of tests out there now. I don't know really what's available across the various areas of the country. I'm hearing saliva tests and things of that nature. But what should a patient request or expect for the best outcome as far as knowing for certain that they're positive or negative?
Dr. Richter: Yeah. So really the best way to do it, so you bring up a great point, is when you're being tested for COVID, what are you being tested for? Although there's a variety of methods, the giant Q-tip in the brain test, spit in a cup test, or the blood test. Ultimately, they fall into really two categories. Are you measuring the antibodies, or are you measuring the virus? I think that the virus test, the blood test is probably the best one because that will let you know if you actually have the virus in you, and the virus is causing trouble. The difficulty with just getting the antibody test, so let's say someone coughs on you and you got to get tested and you get tested for an antibody, you don't know if that's from just right now or maybe four months ago when you went to pick up groceries, you didn't realize it but you got COVID, were asymptomatic during the entire time and those are antibodies from several months ago. So in general, I think if you're concerned for an acute infection, I prefer the blood test, looking for the virus itself.
Caller: Okay. I recently read that there is a combined single sample influenza/COVID test that's available through the national labs, Quest and LabCorp. Do you think that the hospital labs would also have that available?
Dr. Richter: So they might. We have something here that we call a respiratory pathogen panel. So in the days prior to COVID, if someone came in with upper respiratory symptoms, we have one test that looks for influenza, one test that looks for something called RSV, and then we have this one test that looks for 21 of the most common viruses, things like parainfluenza and actually looks for the non-novel coronavirus. We were running that earlier on this year. We actually originally thought if you tested positive for the old Coronavirus, that you couldn't then have the new one. You actually can. Again, it's about 2% coinfection. But what we'll probably continue to do is run our respiratory pathogen panel, which includes things like influenza, RSV, parainfluenza, old Coronavirus, and about 20 others, and separately run the Coronavirus because, ultimately, the majority of these viruses you do nothing for, but a handful of them have specific therapies. So RSV, for example, you can give ribavirin and flu you can give Tamiflu. So it really helps to know which medicine you should get, if any.
Caller: Great. And then just lastly, I just wanted to make a comment about IVIG because I think there's some confusion, especially I see that within the Facebook groups, that people believe that if they are getting IVIG that they are actually protecting themselves against Coronavirus, COVID-19, specifically. I think patients have to understand that maybe someday it'll eventually make its way into the IVIG supply, but that's probably highly unlikely now. Would you agree with that?
Dr. Richter: It's zero now. Your point is extremely well taken. There's no belief that IVIG in and of itself will help support things. Again, if there are other infections or other conditions, it will help against those, and it just happens to be something we observed in terms of the people who are hospitalized. But sometimes when we observe it, it doesn't mean that we can necessarily fix it. We just like to make sure that people's IgG levels are higher going into cold and flu season to prevent against, unfortunately, all the other infections.
Caller: All the other infections. Great. Well, thank you. Thank you so much. Dr. Richter, keep yourself safe. You're on the front line. You're exposed to all of this. Just we thank you for everything that you and your colleagues are doing for our community. Thank you. Thank you, Jenny, for taking the call.
Jenny: Thanks for the question. Great questions. Dr. Richter, you also mentioned -- I just have a really quick question, and we're at time and we need to go -- but you mentioned blood thinners. So I've heard that COVID can create these blood clots. At what point do you think any kind of blood thinner is appropriate when treating COVID, or should we consider even taking the baby aspirin or something like that? I know some patients are on blood thinners anyway, so what's your opinion? And that will be our last question.
Dr. Richter: No, no, no, this is also in evolution. So one of the things, when the body gets very inflamed -- actually, let's take this back. So I always love to draw comparisons to cavemen. I like to call us cavemen and cavewomen with cell phones. We're not that far evolved as we think we are from our cavemen and cavewomen ancestors. So there's something called acute phase reactants, and these are chemicals that go up in the body when our body gets stressed. Stress to human is not waiting for election results. It's not the Wi-Fi is down. It's really when we are cavemen and cavewomen being attacked by a saber-toothed tiger or something that will tear us to shreds. So the body's response to any stressor, really any physical stressor, is to increase clotting mechanisms to prevent us from bleeding because when we get stressed, the body thinks we're being chased by a dinosaur, not a dinosaur. I know some people would say it's a wrong period, but other animals.
So when the body gets stressed, the platelet count goes up. The factor VIII goes up, which is one of the clotting factors, and something called the D-dimer can go up. The D-dimer relates to the body's clotting processes. Now, D-dimers, in general, can be elevated in myeloma. It's part of the inflammatory response of myeloma. But when the D-dimer levels get very, very high and people who are sick with COVID, we think they may be at such a high risk for blood clots. Also, in a setting that many of them are going to be in hospital beds not moving around, that we give some of those patients blood thinners.
I think that if you're at home and you're diagnosed with COVID but no severe symptoms, I don't think you should prophylactically take blood thinners. Aspirin in and of itself is probably not completely helpful for that scenario mostly because aspirin prevents against clots in arteries. Blood thinners tend to prevent clots in the veins. So when we give blood thinners for the elevated D-dimers in really sick COVID patients, it's really to prevent clots, not just in the arteries but in the veins as well.
Jenny: That's so fascinating. I did not know that. So thank you. That's such a great information. I love it. Well, Dr. Richter, you are a fountain of knowledge, so thank you so much for joining us today. I just love it. Thank you for helping us address our specific concerns because I think we're just a unique patient population that needs to have knowledge like this as we try to navigate this whole thing.
Dr. Richter: I couldn't agree more. Just as several people said, thank you so much for all of your work, your advocacy and putting stuff together like this. On our side of the equation, we are extremely appreciative of the work you do to keep everyone as informed as they are.
Jenny: Oh, well, thank you so much. It's my pleasure to do it. I'm just so appreciative for people like you who have dedicated their careers to helping us. So my heart is full of gratitude for you. So thank you to you and all of our listeners for our Myeloma Crowd Radio. We invite you to tune in next time to learn more about the latest in myeloma research and what it means for you.
about the author
Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical research. Founder of Myeloma Crowd by HealthTree and the HealthTree Foundation.
Full Show: Looking Forward into 2022 in Multiple Myeloma With Robert Orlowski, MD, PHD, MD Anderson Cancer Center
Copyright © 2021 HealthTree Foundation. All Rights Reserved.
The HealthTree Foundation / Myeloma Crowd is a qualified 501(c)(3) tax-exempt organization. Tax ID 45-5354811