Tag Archive for: newly diagnosed myeloma

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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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.


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.

What Can Newly Diagnosed Myeloma Patients Expect When Starting Treatment?

What Can Newly Diagnosed Myeloma Patients Expect When Starting Treatment? from Patient Empowerment Network on Vimeo.

As a newly diagnosed multiple myeloma patient, the thought of treatment can be overwhelming. Expert Dr. Rafael Fonseca shares insight about expectations when starting a new treatment, and what goals providers have in mind for patient care.

Dr. Rafael Fonseca is the interim director of Mayo Clinic Cancer Center and serves as the director for Innovation and Transformational Relationships at Mayo Clinic in Arizona. Learn more about Dr. Fonseca here.

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Dr. Fonseca, we have a question from a newly diagnosed myeloma patient. Barbara says, “I am just about to begin my first myeloma treatment. What can I expect?”

Dr. Fonseca:

I think if you start on treatment, first of all I hope they already went through a good description of what the treatments are, the frequency by which you’re going to have to go to the center, and also what are the toxicities to look out for.

One of the most common toxicities that we face and one of the most challenging parts of initial treatment is the use of steroids. So, we use dexamethasone as part of every single regimen we use for myeloma. I tell patients, “Dexamethasone is a simple drug at first glance, but it’s oftentimes the most complicated part of treatment.”

The human brain works at triple speed when you’re on dexamethasone. So, it’s hard to sometimes be able to sleep properly. People can become anxious and even the sweetest person in the world can become a little bit edgy on dexamethasone.

I always say Mother Teresa on dexamethasone would be an edgy person. Just be patient. Work with the team. Just know that on the other side of treatment there is a return to normal life.

Our goal as we embark on treatments and, for instance, is I see patients that are going to go through transplant, I tell them, “Our goal is you finish, you recover, and you go back to your life. You back to work. You go back to your family, your kids, your sports.” That’s really what we strive for when we treat patients with myeloma.