Myelofibrosis expert Dr. Michael Grunwald from Levine Cancer Institute discusses strategies for patients living far away from specialists, how often blood checks should be performed, and proactive patient advice.
[ACT]IVATION TIP
“…partnership between a specialist and local hematologist-oncologist and/or primary care physician can be beneficial for patients.”
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Transcript:
Lisa Hatfield:
Dr. Grunwald, what strategies do you recommend for managing myelofibrosis patients who might live 200 or 300 miles away from the nearest specialist? And how often, if you are helping a patient who has a local oncologist and you’re seeing them as a specialist, how often do you want to see those patients?
Dr. Michael Grunwald:
So I agree that the partnership is very important. So I enjoy seeing patients who live far away and I enjoy partnering with their local hematologists-oncologists and sometimes their primary care physicians. So I think that, you basically gave it, it’s great advice for patients in rural areas to seek out these partnerships. But it’s hard for patients to come here frequently. Let’s say a patient with myelofibrosis might need blood checks monthly. It’s a long distance to drive 200, 300 miles. I’m not even sure if it’s a drive or a flight or a train trip or bus trip. It can be very challenging. And not everybody has a car. Not everybody has somebody to drive them if they don’t drive. And really a lot of challenges, gas money, so forth. So depending on how sick a patient is, we will tailor the visits.
If I think that a patient is doing reasonably well, then I might see the patient once or twice a year. Sometimes telehealth, sometimes in person, if I’m very worried about someone, I might encourage them to come a little bit more often than that so I can get some hands-on monitoring and do a physical exam in addition to just speaking with the patient. So, I would say it varies, but there are many myelofibrosis patients who check in with me, either in-person or telehealth, if they live in North Carolina as little as once a year, whereas they might be getting their blood checked and seeing their local physician as frequently as every month.
Lisa Hatfield:
If you do have a patient that you’re seeing once or twice a year and they’re interested in a clinical trial that’s at your center, would that require that patient to relocate to your center for a period of time to be part of that clinical trial?
Dr. Michael Grunwald:
Unfortunately, most of the time, yes. Because trials, especially during the first few weeks and even sometimes the first few months of care on a clinical trial, the trials require very close observation and frequent visits. And depending on the phase of the study, the purposes can be a little bit different. But a lot of that frequent monitoring has the patient’s best interest in mind, meaning the safety of the patient. So patients are being watched for side effects while they’re on an experimental drug.
And we’re making sure that we’re not causing more harm than good with the experimental treatment, which I think is extremely important because our first goal as physicians is to do no harm to anybody. We want to help, but we certainly don’t want to hurt anybody, but we’re not always able to help. But I want to change ones a little bit differently, but our first goal as physicians is to do no harm.
We certainly want to help everyone, most patients we can’t help, which is fortunate. It’s great to be a physician in 2024 because we can help most patients. There are some issues that we don’t help as much with as we would like to, and we just want to make sure we’re doing no harm. That at worst, at worst we’re neutral to the patient. And keeping safety in mind with clinical trials is paramount in doing clinical trials. I don’t think we can do it without keeping safety first and foremost.
So yes, with some rare exceptions, patients do have to relocate to a center like ours or another larger university settings center in order to receive clinical trial care. There are some types of observational studies, meaning studies where patients are receiving a standard of care treatment and they are being observed for certain outcomes where a patient might be able to participate even if he or she is far from a major center. Those studies usually are not using investigational treatments, but they might help contribute to learning and to science, that’s very important in learning about myelofibrosis.
My [ACT]IVATION tip for this question is partnership between a specialist and local hematologist-oncologist and/or primary care physician can be beneficial for patients.
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