Expert Advice for Newly Diagnosed Myeloma Patients
Expert Advice for Newly Diagnosed Myeloma Patients from Patient Empowerment Network on Vimeo.
Myeloma expert and researcher Dr. Krina Patel shares key advice for patients newly diagnosed with myeloma, encouraging patients to take an active role in their care.
Dr. Krina Patel is an Associate Professor in the Department of Lymphoma/Myeloma at The University of Texas MD Anderson Cancer Center in Houston, Texas. Dr. Patel is involved in research and cares for patients with multiple myeloma. Learn more about Dr. Patel, here.
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Transcript:
Katherine:
Myeloma can be a complex diagnosis. What are three key pieces of advice for patients who has just been diagnosed with myeloma?
Dr. Patel:
I think any diagnosis of cancer, of course, is really hard, but multiple myeloma is so rare in the sense that people don’t know about it; that sometimes it’s the first time they’ve heard of it, when they’re diagnosed. And so, I think the biggest thing about more rare diseases in general, the best advice I could give is getting a myeloma specialist as part of your team. That doesn’t mean they have to treat you, but having them as part of your team. And we can talk about that in more detail. But the second part is really learning as much as you can and not necessarily all on the Internet.
Not everything on the Internet is correct. But really asking questions to your doctors, your nurse practitioners, your nurses, they all have different perspectives that asking questions for all of them is really worthwhile to kind of understand what you’re going through and what’s to be expected. And then, the last piece. I think with multiple myeloma patients, there are so many amazing patient support systems, especially after COVID but even before COVID, in terms of different groups that are sponsored by patients where you can listen when people come to give talks, et cetera. I think those are all phenomenal resources for patients.
Katherine:
What do you think the role is of the patient in their own care?
Dr. Patel:
So, gone are the days of paternalistic medicine, especially in the U.S. My job is not to tell you what to do, but my job is to really give you options as to what is the best possible therapy for you at that time. And really, your job is, as a patient, to make sure that they tell me all the information that’s important for them. So, for instance, if they can’t come to chemo every week because they just don’t have a ride or they have some other medical problems that maybe I didn’t know about, those types of things. We just have to have that open communication, so we can come to that best next therapy together with those decisions.
