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CML Expert Discusses How to Protect Yourself From Coronavirus

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Published on April 6, 2020

Key Takeaways

Dr. Michael Mauro, from Memorial Sloan Kettering Cancer Center, takes questions from patients and care partners on managing chronic myelogenous leukemia during coronavirus, and explains the risks for people who are in treatment or have been previously treated for CML.

Dr. Mauro also describes what’s going on in New York City as in-patient units are being shifted from typical leukemia wards to COVID-19 services to accommodate the growing number of cases.

Watch to hear an expert’s perspective on questions like, “Are CML patients at higher risk for COVID-19? How does treatment impact immunity? When a vaccine is available, will CML patients be able to take it? Are there any concerns about medicine supply?” 

[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.]

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Transcript | CML Expert Discusses How to Protect Yourself From Coronavirus

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 April 2, 2020

Andrew Schorr:
Greetings, it's Andrew Schorr from Patient Power broadcasting from Southern California. Joining us is a noted expert from New York City, Dr. Michael Mauro from Memorial Sloan Kettering Cancer Center. Dr. Mauro, thank you for being with us for this program about the COVID-19 virus and CML. Thanks for being with us, Michael.

Dr. Mauro:
Thanks for having me, Andrew. Glad I could join you.

Andrew Schorr:
Yeah, well we appreciate how difficult things are for the country, but particularly where you are in New York City. First of all, tell us about what's going on there at your hospital related to the virus, and also, if you could talk about the risk for people who are in treatment or have been treated previously for CML.

Dr. Mauro:
So, New York's a pretty tough place to be right now, but I think we're going to do the best we can to maybe be on the leading edge. I think we've gotten a lot of organization at the state level. I think we're all struggling with some other levels, but, our hospitals, unfortunately, are filling up. I live right near the hospital, and I hear ambulances day and night, around the clock. Our inpatient units are being shifted from our typical leukemia wards to COVID-19 services, divided out amongst people with blood cancers, solid tumors, et cetera. We've risen to the challenge of increasing our bed capacity, our ICU capacity, and we're all going to rotate through and take care of our patients. It's going to be tough.
 
But I think no one probably could have been completely prepared for this, but I'm glad that Sloan Kettering is doing, I think, a great job, and I feel like we should have the equipment we need, although it's going to be touch and go at times. And it's New York kind of coming together, and we're going to bear the brunt of it, but hopefully learn something and never have it happen again and help the rest of the country.

Andrew Schorr:
Well, our hearts go out to you. We all have concerns, of course, all over the country, but we're aware of what a hot spot, as the term is used, in New York, and there at your hospital as one of the major hospitals in the world, related to cancer, of course. So let's talk about CML. We got many questions, people diagnosed with CML say, "Am I at higher risk, because I have CML?"

Dr. Mauro:

I think we can bank on our history and our experience. We've obviously treated CML differently over the last 20 years with a non-chemotherapy approach, a targeted therapy, the TKIs, and thank goodness we look backwards and people with CML, when they were diagnosed, they weren't necessarily plagued with infections or those types of complications. They had, obviously, blood abnormalities, and there definitely were some risks, but it wasn't the major challenge.
 
And then, fortunately, the therapies were used like TKIs also were pretty efficient that put people in response and probably the biggest risk is going through the early response and where the white blood count can fall, so we can overcorrect at times. But we think of a CML patient even early in treatment, once the blood counts have stabilized, hopefully, not to be immune-compromised in any significant way, from the CML itself, from the therapy, and a patient in deep remission's probably in a better place, although it is a wild card. We don't know any of the answers for sure, but the overarching principle is we don't think that our CML population is particularly vulnerable to the COVID-19 infection, but we obviously are very anxious and taking plenty of precautions and eager to learn much more about it.

Andrew Schorr:
Let's flip it around. Some patients have been writing in and asking, “Do TKIs actually improve immunity against a virus?”

Dr. Mauro:
That's a great question. I won't lie to you, if you look in the literature, you'll find information about how many medications, including the TKIs for CML might have some ability to impair, for example, a virus's ability to package itself back up and infect another cell, but we've never had this kind of challenge before. And I think, we can say is that we don't, so far, see patients with CML being particularly being hit hard with viral infections if they're having complications. I think a lot of medications are being looked at as could they have some effects to minimize or even improve an outcome for someone with this infection, with COVID-19. That's going to take a lot more work.
 
Right now, you see the focus is on things that probably have a bit more traction, like hydroxychloride, hydroxychloroquine (Plaquenil) and other medications, anti-malarials. I think, however, that feeds into our general advice where, in the absence of negative information where we think TKIs are not good or there's some negative impact, we want to dispel some of the fears people might have, saying, “Gosh, I'm on chemotherapy, I have leukemia, I probably ought to hold off on this or lower the dose or do something about it,” that's probably pretty universally believed not to be the thing to do. The thing that might best to do, would be to hold the course.
 
Individual cases, of course, there may be some adjustments and different answers for different people, but again, big principles would be that, unless we have negative information, can't say that much positive. Although we are looking pretty carefully at this from a global perspective, different groups, International CML Foundation, for example, the CML Consortium in the United States even the American Society of Hematology, we're all trying to put databases together to see what happens with folks as they battle these infections.

Andrew Schorr:

Right. I should mention to our audience and thank you for joining us, folks, from around the world. There's a little Q&A button at the bottom of the Zoom screen, and you can hit that, and that will put in your question. And then it will go to our producers, and we'll get to as many as we can with the time that Dr. Mauro has.
 
We've gotten some great questions already, so here's a question, “When there's a vaccine, we want to look forward, we know it may be many months, people are aware of pneumonia vaccines and shingles vaccines and flu vaccines, and people have heard about live viruses. When there's a vaccine, not knowing what it's going to be yet, will CML patients be able to take it?”

Dr. Mauro:
That's a great question. I think, going back to the same principles about what happens with CML treatment, “When is the disease triggered and when someone's in response or remission, what do their blood counts look like? What is their medication doing?” Those are all the kind of pieces of the equation we want to think about.
 
My general assumption now is can someone get pneumococcal vaccine polyvalent (Pneumovax) or influenza vaccine with CML. I tell people, yes. I think there's still some concern about live attenuated viruses where you, in theory, could have the symptoms of the condition even though you couldn't have, potentially, a full infection from the pathogen, but you can have something that looks like it. So we'll have to see what type of vaccines are developed, but I'd be pretty hopeful that CML patients, if they're on treatment and doing well, with normal blood counts, on the same medication they're using today, we don't really have, again, that strong sense that there's any sort of negative impact on the immune system, any kind of cell line deficiency, any dysfunction, where we'd probably proceed with caution and assume that CML patients would be quite eligible for vaccines, and hopefully it would be fine.

Andrew Schorr:
Okay. Here's a question that came in from Shannon. She says, "My husband has been undetectable for a few years. About a year ago, stopped taking nilotinib (Tasigna). He has remained undetectable. Is he still considered to be in the high-risk category, or would he be just like me in the general population? And if he contracts COVID-19, could it kick the CML back up?" I don't know if we know any of that, do we?

Dr. Mauro:
That's a multi-part question, and the last one's probably the most intriguing to me, honestly. So good news is, people can undergo what's called treatment-free remission, and we have some specific thoughts about that. What does that mean if you're off treatment, and you're in remission, and it's been this substantive amount of time? We probably would put those people in the same category as their age-matched peers, as we'd say. No one's risk is lower, but you might say that your risk might be the same as someone your age with other health issues you might have but no CML, no TKI treatment, and that's exactly this gentleman's story, which is great to hear.
 
The devil's in the details, so I think, if you look at people who have undergone treatment-free remission, we have a few bits of advice we'd probably want to think about, one being this might not be a good time to start that process which that gentleman is already pretty far downfield in and is successful. If you're early on, very early on, say, in the first few months, when it may be more touch and go, and there could be a need to retreat, now might be a time to talk to your doctor pretty quickly and seriously about. “Should I go back on, temporarily, and try this again when things, when the dust has settled?” But if you're pretty far down the road at 12 months and beyond, the relapse risk is pretty low.
 
The most intriguing part of that question was, if the COVID virus, when, unfortunately, was part of the story, what would happen with the CML? I don't think I have any information about that and the more I think—that’s a great question—because that would be rough. We have an increasing number of people who have been successful and been able to stop their TKIs with CML. I'm hoping that's not the case. I don't have any biologic or scientific thought at the moment why that should happen, because those people might have the flu or any other challenges for that matter, we don't see the CML, that doesn't seem to be a risk factor for the CML elapsing when it seems to have been in stable treatment-free remission before.

Andrew Schorr:
Right. Okay. The questions are coming in fast and furious, so here's one. Is there yet any antibody test for the virus, to know if we have it or not?

Dr. Mauro:
Yeah, I think I'm watching CNN and the CDC and my governor, just like everyone else is listening, and I believe the main hospitals and research centers are working as quickly as we can. And obviously there are patients receiving immunoglobulin therapy, which is basically the serum with antibodies from patients who have recovered from this infection, that's already in trials, so there is obviously a way to look by a quick test called ELISA and other assays, so they're out there.
 
Are they widely available? Probably not, and I think we want to find the best and the one that's the most sensitive and specifically, kind of tells you, yes/no and to what degree. So I wouldn't look for that just yet, but definitely keep asking and follow the news, literally. Our news is consumed with this right now, for good reason, and I think we're going to hear about it. It's in the research setting right now, I would say.

Andrew Schorr:
Right. Dr. Mauro, so here's another question we got in. So if you're taking medication that even, just for a time, lowers your white blood count, does this put you, at that time, more at risk?

Dr. Mauro:
So it's pretty simple numbers, just like we take precautions when people are at risk for COVID, if you have neutropenia or low white blood cell count, we want to minimize that. Although, it's not like conventional chemotherapy where there's a lot of damage to the rest of the system, where there's breakdown in the barriers to infection, your sore mouth, sore GI tract, things like that. With TKIs, low blood counts should be avoided at all costs, right now, because we don't want to play with fire, so that's kind of some of the guidelines people are trying to write. We're trying to put together, you want to minimize neutropenia if at all possible, which could mean you be more careful about the way you take your medications, not falling off the radar with monitoring if you're at risk, and if you are to be extra cautious and understand what are called, "neutropenic precautions," and even more restrictions on top of the restrictions we have now.

Andrew Schorr:
Now, some people with CML are healthcare providers, and so we have had questions from some and here is one, “Is it safe to work in a hospital with COVID or presumptive patients on the unit if you're a CML patient?”

Dr. Mauro:
Now I think a lot of workplaces and especially a lot of hospitals do have waivers or are able to remove people who are most vulnerable, and I think the categories I’m aware of would be women who are pregnant, because that's a bit of an uncharted territory. We don't know what that could mean. People who are of a certain age, generally, over 60, and I think people who have a compromised immune system and that’s where the question lies, “Do you have a compromised immune system if you have CML?”
 
Now, I personally, even, been talking to a lot of my patients and a lot of people about this, and I generally say that, and I'm sure we can say that someone's—that entirely know, so I would talk to your employer about it and maybe hope that there would be room for a little bit of consideration there, that someone with leukemia, maybe on therapy, particularly, may be given some consideration. Although, on the side, they probably want to reassure that patient in what I said before, that I think people in remission and especially people in remission who have stopped their therapy and they're in a treatment-free remission, may be pretty close to their age-matched peers who don't have CML and aren't on treatment. So part of me wants to say that person should be excused or should limit their risk but, in my heart, I think, maybe, the risk may not be as high as they might be worried about.

Andrew Schorr:
Michael, you were on the ground floor of the very earliest use oimatinib (Gleevec), and then we've had some other viruses, SARS, MERS, that have come along since that time. While you don't have the data on CML and COVID-19, are there any learnings form CML patients going back with these earlier viruses?

Dr. Mauro:
Well, CML is a pretty rare condition and those outbreaks were in pretty small areas, so in hindsight, of course, we're looking for that kind of data, and we'd love to have it and it might have similar questions, “What is the risk in a patient with CML, what about any protective or good, bad or indifferent effects from taking TKIs?” And I'm not aware that we have been able to learn from that, but, of course, now, we probably will, because we will have a critical number of people who have CML, will be affected.
 
Although, I can tell you, as our registries have been open and we've been asking for people, if you do know someone who is suffering with CML and also is exposed, to let us know how they're doing and what interventions, et cetera. I'm surprised, and I'm glad to hear that the case number is low.

Andrew Schorr:
Right. One of the things that has come out of it, I know, in the CML world, you and your peer experts, really, talk, but I mean, there's pretty good collaboration going on and sharing of information now, isn't there?

Dr. Mauro:
I have to tell you that maybe not working physically in the hospital has meant that now I can work even more around the clock, because my family's out of New York, thank goodness. And it's just me, and we're communicating around the clock and trying to move as quickly as we possibly can to take care of what we need to do on the ground but also think about, “How do we learn from this, and how do we do better next time?” It's definitely a collaborative effort in real time and very rapid time.

Andrew Schorr:
Well, that's good news. Just for our audience, so I want to tell you how to use this Zoom platform. You don't have to raise your hand. Just where the Q&A button is, type your question, it goes to my wife, who's also the co-founder of Patient Power, Esther, and then Esther's typing me little notes, and that's how I'm seeing them.
 
Okay. So this was one of these things on the internet. Somebody wrote in and said, "I've read that NSAIDs are not a good choice when dealing with COVID-19 virus," and somebody was even sending a video out about that. Do you have any information about that, taking ibuprofen (Advil) or something like that?

Dr. Mauro:
So the nature of this virus is that you see these cartoons and you say, “Wow, it looks like an alien cartoon with little suction cups on it,” and what they're trying to portray is the way this virus actually attaches and enters cells, which is through something called, angiotensin-converting enzyme, or ACE, and there is a little bit of a reason to think about what anti-inflammatory to use, because there are medications that affect ACE. There are ACE inhibitors, there are ACE2 inhibitors and aspirin and lots of anti-inflammatory can increase exposure.
 
However, rather the expression of ACE, [inaudible] ACE and it's on a lot of tissue, especially in the lung and there is a little concern that, if you have inflammation from this infection and you go ahead and add an anti-inflammatory to that, you might potentially help the virus.
 
Now, that's not really founded. The FDA hasn't weighed in on that. There is something in the literature. There's a letter in Lancet, the medical journal, The Lancet, if anyone wants to look at it, so it's more of a theory. It's been anecdotally noted by European physicians. I've heard from colleagues of mine in Europe to say exactly that, they prefer acetaminophen (Tylenol) over nonsteroidal anti-inflammatories if you need a medication.
 
I've had this specific question come up with MPN patients, which a lot take aspirin, low dose, as a preventative measure, and my view would be there's no reason to stop that. But I would say, if someone was very symptomatic or sick from this infection, that might be the time to hold the aspirin. But for the general population, if you have a headache and you have the choice of taking a nonsteroidal anti-inflammatory or acetaminophen and they both might work, I would grab the acetaminophen right now.

Andrew Schorr:
Okay. Dr. Mauro, so, many people who are on a medication get it mail order and at the regular supply and they've been getting it for years, is there a concern? Have you heard from any of the manufacturers with the global pandemic, any reason to worry about supply?

Dr. Mauro:

Another great question. I hope not. I haven't heard about any challenges. A lot of people think about the way our healthcare system works with big pharma and government, and where do our medications come from, and who's in charge. And I think our pharmaceutical manufacturer supplies, even generics, are pretty well situated, and there's probably ample back stock where I don't think we'd have a run on TKIs or a shortage.
 
I'm sure, certain things may be happening where there's less production and may be efforts being put in to making other medications that may be more necessary, like hydroxychloroquine, for example, but I've had a lot of people ask me about getting their prescription redone, maybe getting a 90-day supply. I don't want people to treat their TKIs like toilet paper and start feeling like they have to run out and get extra, maybe not for always a good reason, but I think it's fine to just be sure you always have a drug supply.
 
When I do my clinics, which are now all virtual, one of my points I always want to make is to say, “How's your drug supply? Do you have a good path? Let's not let the prescription run out, let's not wait until the last minute. And if you feel worried about it, I can put a new prescription in for your 90-day supply,” and we'll hopefully get through it and not worry.

Andrew Schorr:
Well, you know I did that. I don't have CML, but I do have another myeloid condition myelofibrosis, and I'm on a drug called fedratinib (Inrebic, and) so, as all this was breaking, I actually requested at the pharmacy, a 90-day supply. So now I got these three big bottles and I can weather the storm, I hope, at a big co-pay but I did it. So it's up to you, I think, folks, but you're right. You want to have a good supply. You don't want to be down to the last little bit of the bottle.
 
So, here are some questions we got in. So someone said, “If you have CML plus other complications from oral chemo, maybe other conditions as well that lower your immunity, should you avoid being anywhere where you could be around COVID patients or people who potentially could have COVID?” This person said they got mixed reviews from the CML Foundation. So it's like, who are you around, particularly if you have other stuff going on?

Dr. Mauro:
Yeah. I'm not one of the health authorities that supposed to be getting these general messages out, but boy, no better time than now to be as conservative as you possibly can. You're hearing from, at higher and higher levels, that the best way to avoid this is to isolate yourself. You can't isolate yourself from maybe your family or your loved ones or your health, your providers. But if someone has CML and other health conditions and they are worried about how those other conditions might affect their immune system, or their risk of complications and infection, that's a person who should be being extra careful.
 
I even tell a healthy younger person with CML who's in deep remission, to say, “You need to follow the guidelines as strictly as you possibly can, because we just don't know,” and that's just the sadness of some people who maybe aren't heeding those warnings, who have no health issues, who are being pretty hard hit from this so if you know you have that on the plate already, no better time than now to be as conservative as you possibly can.

Andrew Schorr:
Right. I'll just say, in my own life, we're here in Southern California, and we don't have the dense population where I live in a smaller town than you have, right outside your door, in New York City, so you can actually walk down the sidewalk and maybe somebody else is coming, and we're all really good about separating.
 
Now, going to the supermarket, that's a different story, so I don't go. My wife, who's not affected by leukemia or a myeloid condition, she goes for me, and now I think she's going to start wearing a mask. There's been some news about this aerosol issue today, and she does use gloves, and then she washes her hands and wipes everything down and all that kind of stuff.
 
Here's something we got in from somebody along that. She says, "I'm seven months into a treatment-free remission and have been identified as a person of extra risk by my family doctor, advised to isolate for 12 weeks. I care for an elderly relative and have to go outside to get food as infrequently as possible, so I wear a dust mask, scarf around my face and wear spectacles and disposable gloves and carry some alcohol for hand cleansing. Is there anything I can do to minimize my risk?" because she's helping another person.

Dr. Mauro:
Yeah. I don't know that—everyone's individual situation may be unique, but, at face value, if someone was seven months into treatment-free remission, I would be a little bit more worried about that they still might have some risk of the CML needing to be retreated, because after six months it's pretty successful, but between six and 12 months there still are those chances, and there may be other things about that person's case that make them a higher risk for complications or infections. So I just said that someone in that situation should take pretty strict precautions but if you're caring for someone else and you need to get them food and there's no other way to do that, I'm not sure what more you can do.
 
They sound like they're doing all the right things. I mean, covering of the nose and mouth is, ironically, to protect other people. You shouldn't get a false sense of protecting yourself from that. These special masks that filter viral particles, the N95 is really what does that.
 
And then, it's mostly about contacts and space, physical space, which are just common sense things that you can do, so I think she sounds like she's doing a great job, that person, and I feel like she can continue to care for that person, that's very sweet and is necessary around the world, I'm sure, and just keep taking as much precaution as possible but maybe temper the view that what the risk is, but it is very individual.

Andrew Schorr:
Right. I know, here in California, the supermarkets, people are queuing up with some distance as to who goes in. Seniors, at different times or maybe you could say, “Well, I'm not a senior, I'm younger, but I'm in a vulnerable population,” and you go at that special time and people are spaced out through the store.
 
Somebody wrote in from England and said that in England now, they do consider CML patients at high risk and they strongly recommend a quarantine for 12 weeks. So that's what they're doing there, but I know you all are talking.
 
Folks, if you have questions in the just remaining time that we have, Dr. Mauro, might give us just a couple of extra minutes. Again, hit that Q&A button, send it to Esther, who's our producer, and we'll go through a couple of other things.
 
So, the media says there could be a second wave. You're in the thick of it in New York City right now. Please, God, it'll trend down and maybe warmer weather, who knows, ultraviolet rays, whatever, will have a negative effect on the virus, but we may have to wait months and months and months for a vaccine. So how do you think about the future, now, Dr. Mauro, for CML patients, if we get past this in the next weeks or month or two months?

Dr. Mauro:
I'm trying to take it day by day and week by week, but, of course, as a healthcare provider, I'm thinking about those kinds of questions, “How are we going to move forward?” I think life's going to be different in the near term and I think, I'm hopeful that a lot of people who, thank goodness, may not be very affected, might have been exposed, might develop some immunity. It's something called herd immunity, which can develop when several people are immune in a population, and it minimizes the spread of virus again, so I'm hoping that principle might kick in if there is another wave.
 
I think they're working very rapidly on vaccines, so the faster we can work, the better, and thank goodness we have technology and drive behind this. So I think we have to take it one step at a time and get as much information as we can and manage accordingly but, by golly, we're going to have to be extra cautious for the foreseeable future. And maybe we'll come out the other end a little bit stronger, a little bit smarter and a little bit less likely to be making each other sick.

Andrew Schorr:
Hope so. Michael, so here's—I wanted to get into the area of doctor/patient communication at this time. We got a question like that. So this person says, I have a very long history with TKI tries and many side effects along the way, many types of medical complications along the way." This fellow or woman had plural effusions at some time. "Who should I call if I experience shortness of breath? Do I call my hematologist, or do I call my primary care doctor?"

Dr. Mauro:
That's a great question. I've often noticed that the leukemia floats to the top when it comes to the decision making because it may often be the ultimate arbiter of how to manage a complication or side effect so it sounds like that person's worried, if I get sick and think I might have this viral infection, do I call my primary care, maybe the pulmonologist or a lung specialist or the leukemia physician? I'd call the leukemia physician, because I think they're probably going to be aware of the medicine-related side effects like a plural effusion, if that's a TKI side effect, what does that mean?
 
I was just on a call with my colleagues, reviewing all of our patients, both COVID-positive and COVID-negative in the hospital, and it actually came up. We had a patient who is in deep remission, on therapy, but has a plural effusion and there's a question, “What do we do with the TKI?” And we made a decision to hold the TKI, because we don't want the plural diffusion to compromise the breathing even more and allow the viral infection to take more away from this person's recovery. So I think the hematologists or the leukemia specialists, the cancer physician, might be a good first call, although that is not to say that we are very reliant. And thank goodness we have critical care and cardiology, pulmonary, all the specialists we need to take care of these patients. Our critical care and anesthesia physicians are so vital right now, and there aren't as many of them as there are others of us, so I think, yeah.

Andrew Schorr:
So, Michael, are you doing telemedicine with your patients? Maybe Mrs. Jones was scheduled for a follow-up visit, so are you or your nurses, your staff, calling and saying, “No, don't come in, but Dr. Mauro will connect with you on video or audio,” or whatever. What's happening, related to remote connection?

Dr. Mauro:
Yeah, I'm proud to say that pretty quickly, just like kids learn to go to the class via Zoom, I think physicians, now, are doing telemedicine, and our hospital was really quick to get us set up for that. And I think patients really appreciated it, because we can check in with them, and we can do a fair bit—although it's a little bit, obviously, cold because there's no personal connection—but that's what life's like nowadays. But I think it's essential to help people with a plan, answer questions, review what's available and make a strategy.
 
So, my clinics, I have a clinic tomorrow. It's going to be my usual dawn to dusk clinic, but it'll be all like this, which is okay. Only people who absolutely need to come in for treatments for critical problems or, God forbid, symptoms related to infection. We're trying to keep the hospital as clear as we can for those cases.
 
On that token, there's advice out there, people want to—sometimes you don't need to go into that big healthcare center or the doctor's office to get what you need done. There are some options, like getting kits sent to the home for molecular tests for CML for PCR tests. We can have labs drawn anywhere. You don't have to go to the big medical center to get a CBC, for example. That can be done elsewhere. Talk to your doctors about that. That's what I'm telling all my patients. We're doing a lot more than just the telemedicine. We're really trying to figure out how we can do this as safely as we possibly can to minimize risk for the patient but still take care of them. I think we can lose our agenda and let things slip through the cracks during this era, that would be equally as awful.

Andrew Schorr:
Right. Thank you so much. So, for instance, you draw people from a wide area., So the idea is maybe that blood test and rather than coming to see you in-person, they're going to get the blood test nearby or maybe even through home healthcare or anything like that. And they'll consult with you like this, so that's great.
 
So, what about if you have a patient in a clinical trial? Is that changing, because obviously, for all the medicines we have, the TKIs, et cetera, it's from people being in trials and you're working on new stuff? So is this all stopped, or what happens now?

Dr. Mauro:
To be honest with you, it's definitely slowed down to pretty much a snail's crawl but research patients, their treatment wasn't stopped. I think our sponsors have been pretty good to respond to our pressure, quickly, to say, look, we have to ship people medications. We have to look past the rigors of clinical trials and accept deviations, we call them, where we're not seeing someone in-person, we're having them getting checked locally. They're having blood tests elsewhere.
 
New trials, for example, our stance has been, if someone can get standard treatment we know works, now is not a time to put them on experimental treatment that we don't know if it works, in this period. Because that's too dangerous and very early trials, Phase I trials, you may not have the manpower or person power to be able to enroll in those right now, but we certainly haven't disassembled everything. 
 
We're just taking it down to what's necessary to keep people in good health, whether it's ongoing research or research that's far along, kind of later stages of development and then just be a little bit more careful about things of unknown risk. Because you don't want to layer on top of this viral infection risk, other potential side effects from new therapies, but I want people to remain hopeful. It's not everything's shut down, and it's going to disappear or wither on the vine, we're just, we're taking protective measures.

Andrew Schorr:
One of the questions that came in—we'll just take a couple more, folks, in the interest of time. So one patient wondered, “any dasatinib (Sprycel) side effects on the lungs and maybe there is something with Sprycel or a concern with some of the other medicines as well?”

Dr. Mauro:
So we know Sprycel definitely has side effects, and that's dasatinib, definitely has side effects in the cardiopulmonaries, basically, heart/lungs. Fluid accumulation can occur, not really in the lung but really between the lung and the chest, called a plural effusion. And sometimes pressure is higher in the blood as it flows from the heart to the lung, called pulmonary arterial hypertension, and those probably both wouldn't be good things to be active or accelerating when someone might be fighting a viral infection, for example. So we're particularly paying attention to that question. It hasn't led for us to feel like we should be lowering the dose or avoiding Sprycel, dasatinib, use now. But, as I raised an example earlier, in select cases, it might be reasonable for the healthcare team to say, “You know what, now, a short break in treatment might make sense, to minimize complications or to steer around that.”
 
Fortunately, technically, CML therapy is like running a marathon. If you take a quick stop for water, you're not going to ruin your time. If you take a few days off of TKI, or a short period of time, depending on where you are in your treatment, that might be a safer, rather than a more dangerous step right now, given those potential side effects.

Andrew Schorr:
Just a couple more questions. This one came in and was related to, I think you were talking about the molecular tests. They said, "Any guidance out there for labs that can do BCR-ABL tests?" because he or she was saying, "Local labs never process these and now, do they need to?" So the BCR-ABL testing.

Dr. Mauro:
All right, so mostly, my patients, their workhorse is going to be PCR, for BCR-ABL so it's a molecular test, not something that the local lab or the local hospital may be doing. They're either sending it to a commercial laboratory, or they might be sending it to an academic center. Or if you're at the academic center, might be being done on-site. So a couple of options there. You can even get to the academic center if you actually need to and get it done. You can get a different schedule. So the schedule can be looked at, patient to patient, maybe it can be delayed slightly, although, generally, we try to stay on schedule.
 
But I was saying earlier, sometimes you can have it sent to the medical center via a kit, or by courier. Maybe the physician, local physician, could order it through a reference laboratory rather than a patient traveling to a tertiary center and maybe exposing themselves to more risk. So there are ways around it where we can still have access to good testing, maybe at a different frequency, maybe at a slightly different lab, although we try to use the same lab, all done to minimize the exposure and the risk.

Andrew Schorr:
Okay. Two last questions. This one is, many people like you probably live in an apartment building in New York City. People wonder now, as we're learning more about spread, should they worry about some ventilation system? I don't know if you're an expert in that.

Dr. Mauro:
Yeah. Funny, my building, and I do live in an apartment building, that came up very early, because they were worried about what would happen, and I think there are a lot of filters in the ventilation system. And I don't think these particles travel very far, as far as I know, but I have to admit, I really don't have any expertise in that area, and that one made me particularly nervous with that question, but I think it would be something we would want to ask as we learn more.

Andrew Schorr:
Dr. Mauro, I want to ask you, turn this around. You're in the thick of it, in New York City, and a lot of changes are going on at your hospital to accommodate the growing number of people who are diagnosed with COVID, whether they have CML or another cancer, certainly, at Memorial Sloan Kettering. Is there anything we can do to help you?

Dr. Mauro:
That's a great question. I'm going to say the same thing that most of the other people have said, and that's for people to just do all the right things and stay home, take precautions, and take care of themselves. On the other hand, if something's wrong, don't hesitate to seek help. The best way we're going to get through this is if we help each other. If you're not a healthcare professional, what you can do is, look after your neighbor, look after your family members, and do all the things that you know are right to prevent anyone from getting sick or spreading this virus around.
 
I know, people would love to say, “Can I make masks, can I donate masks, can I make gowns, can I do something, send you pizza,” we're all going to get through this together. I've never seen, especially in New York, I've never seen so much groundswell of support, so it's really a beautiful thing, and it really goes to who we are as human beings. But my advice is just to listen and to do the right thing. It's pretty much common sense. If you're being told to stay home, stay home. If you're being told to take precautions, take them. If you know, if it feels wrong, “I shouldn't be going to this other person's house for dinner,” don't do it. Stay home.
 
Thank goodness we have such great technology like what we're using, right now, to connect. It's hard to be alone, it's hard to be without human contact, but we'll get through it. And I keep wanting to give this message of hope, “We are going to persevere, we're going to get through this. CML patients, healthcare professionals, New Yorkers, Americans, globally, we're going to get through this.”

Andrew Schorr:
Dr. Michael Mauro, we wish you all the best. We applaud you and your healthcare professionals who work with you. You guys are our angels, and, Michael, I know you said your family's out of town, you're there, going to the hospital, caring for patients. Thank you for being with us today and thank you for all you do at Memorial Sloan Kettering and with your peers who are working on CML and also the myeloproliferative neoplasms around the world. Thank you so much for being with us.

Dr. Mauro:
Thanks for having me. It's a pleasure and take care, everyone.

Andrew Schorr:
Okay. Everyone, thank you. Wonderful physician here, devoted to us. I'm Andrew Schorr with Dr. Michael Mauro from Memorial Sloan Kettering in New York. 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.
 
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