COVID-19 Tips for Patients with Myelodysplastic Syndromes and Acute Myeloid Leukemia
The COVID-19 pandemic has created a unique challenge for patients with myelodysplastic syndromes and acute myeloid leukemia, creating many questions that experts tried to answer in a recent webinar from The Aplastic Anemia and MDS International Foundation.
The following post was written by Jessica Skarzynski for Cure Magazine.
The new coronavirus (COVID-19) pandemic presents unique challenges for patients with cancer. Those with high-risk myelodysplastic syndromes (MDS) and secondary acute myeloid leukemia (AML), in particular, are faced with distinctive challenges in the treatment and management of their disease – challenges that are only made worse by the current pandemic.
The Aplastic Anemia and MDS International Foundation (AAMDSIF) recently hosted a webinar to address the questions of this patient population by connecting them with Dr. Gail J. Roboz, professor of medicine and director of the clinical and translational leukemia program at the Weill Medical College of Cornell University in the New York Presbyterian Hospital in New York City.
Over the course of the webinar, Dr. Roboz, also a member of the AAMDSIF Medical Advisory Board, answered questions from the audience about the various ways that COVID-19 is impacting patients, from treatment delays to transplant and beyond.
Audience: If a patient with MDS were to be diagnosed with COVID-19, what are the most important things that they should let their medical team know, as they may not be familiar with MDS?
Roboz: I think that it’s important that if you’re being seen in a facility where they don’t know you very well or they don’t know much about MDS, you can tell them that MDS is a is a bone marrow failure problem. You can tell them about your own blood counts, do I usually run low neutrophils or low hemoglobin or low platelets or all three, so you can tell them about what your specific experience is. But with respect to therapy, it is not completely clear that the underlying diagnosis, in this case MDS, is going to change what they do.
I think one of the questions is going to be about potential interactions with any medications that you’re taking for MDS. And that’s, of course, something that would be discussed if you’re hospitalized.
If you are not getting hospitalized and you are patient with MDS, I certainly think it’s reasonable to have, if at all possible, a daily or every other day telemedicine visit, either by video or by phone or by email, or however you’re communicating with your doctor as a check in to just see how you’re doing, see how your symptoms are evolving.
Should I continue with routine blood tests under the conditions or should I hunker down and not leave the house?
If the previous blood test that the patient has had is looking absolutely perfect, and if there is a track record over a period of time that we know that this patient is tolerating the drug well and hasn’t had any issues, I would be willing to consider skipping a routine blood test.
That said, I think it’s really important to discuss this individually with the physician. First of all, depending on where you are, I’m hearing that in some parts of the country, you can actually drive to the doctor’s office and they have a check in system that’s allowing you to check in from your car, so that you could actually get into the office, get a lab check and get out without seeing really anybody.
Is there a change in patient protocol for when patient should be concerned about a fever?
That is a really important question, especially for neutropenic patients. I think that if you are neutropenic and running a fever, neutropenic fevers do have to be evaluated, especially in hematologic malignancy patients.
If you don’t feel too bad, and you’re not having shaking chills and you think you can get your doctor’s office on the phone quickly, it’s not unreasonable to try that. That said, most of the time, it’s really tough to get seen urgently in an office at this point. Again, it depends on where you are.
If you’re going into the ER, you have to be very specific with them and say, hey, listen, I have leukemia, or I have MDS. This is my doctor. I’m neutropenic. I’m coming in with neutropenic fever, and they will evaluate you simultaneously for all of the routine things for neutropenic fever, as well as for coronavirus.
What are the recommendations regarding patients moving forward with transplant?
I think that the issue is that the intensive care units in many areas, and the infectious disease doctors and many of the pulmonary specialists and other supportive specialties that are so critical to get patients safely through transplant, are very occupied at the moment.
But we want to make sure that when you come in for a procedure with curative intent, that all of the backup that we need to get you through the procedure safely is 100% available. So, it is definitely the case that patients are being delayed in their transplant. However, there are situations in which people might proceed. And I think again, this has to be a very individual discussion with the physician.
In the New York area, we are anticipating a surge in mid-April. So we definitely have been making decisions for our transplant patients that we don’t want to bring you in here literally at the moment when they’re predicting that things are going to get much worse, because maybe things will be better at the end of the month or at the beginning of the next month. And then we can hopefully start breathing a sigh of relief and bring you in much more safely.
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Robert Hess is an entrepreneur, business owner, CEO, senior executive coach, startup company advisor, and passionate cancer advocate. He is a 15+ year prostate cancer survivor dedicated to ending prostate cancer and helping cancer survivors have the possible possible quality of life. You can find him autocrossing or tracking his Mazda Miata, covered in cancer awareness messages; racing his Serenity in the velodrome; or walking and hiking with his wife. Earlier in life he had the honor of leading soldiers in the US Army – they even let him fly helicopters for a few years. Connect with him on LinkedIn @ RobertWarrenHess.