Tag Archive for: center of excellence

How Should MGUS Be Monitored Over Time?

How Should MGUS Be Monitored Over Time? from Patient Empowerment Network on Vimeo.

Myeloma expert, Dr. Saad Usmani, discusses the diagnosis of monoclonal gammopathy of undetermined significance (MGUS) and how patients are monitored, including key lab values that should be followed.

Dr. Saad Usmani is the Chief of Myeloma Service at Memorial Sloan Kettering Cancer Center in New York City. Learn more about Dr. Usmani, here.

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Transcript:

Katherine Banwell:

Here’s a question we received from a viewer before the program. Mary writes: “I was just diagnosed with MGUS, and I’m obviously very concerned. What should I be looking for, and how often should I check in with my doctor?”

Dr. Usmani:

That is a very good question. MGUS is a precursor disease to myeloma and other class cell muscle disorders. And based on the original homestead county data from the Mayo Clinic, if there were 100 folks who had MGUS, one out of 100 every year would – there’d be one percent likelihood of them progressing to myeloma or some other plasma cell disorder.

So, the overall risk say in the next 20 years for a given patient is fairly low. And what we look at when we’re determining how frequently to check the blood or see the patient is the value of that M-spike.

If it’s a high value, if it’s two or three, we’ll be checking the labs more frequently every three months or so. Maybe seeing them every six months for the first year or two. If the M-Spike value is very low, it’s one gram or less, we might be just checking labs once or twice a year and seeing patients once a year. But I would highly recommend in addition to seeing your regular hematologist who diagnosed you with this MGUS to do seek an opinion at a myeloma center of excellence. 

Could a Myeloma Clinical Trial Be Your Best Treatment Option?

Could a Myeloma Clinical Trial Be Your Best Treatment Option? from Patient Empowerment Network on Vimeo.

Dr. Saad Usmani, a myeloma expert, explains why clinical trials should always be considered when choosing myeloma therapy. Dr. Usmani also discusses common misconceptions about clinical trials and provides key questions to ask your doctor about this treatment option.

Dr. Saad Usmani is the Chief of Myeloma Service at Memorial Sloan Kettering Cancer Center in New York City. Learn more about Dr. Usmani, here.

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Transcript:

Katherine Banwell:

Where do clinical trials fit into treatment?

Dr. Usmani:

So, as a clinical researcher, I’m a big proponent of telling my patients that if there’s a clinical trial that’s available to you, it doesn’t matter which stage of disease you’re at. Whether you’re newly diagnosed, or another myeloma has come back. Consider a clinical trial as your first and best option. Talk to physicians about both the standard of care options as well as clinical trial options.

Most clinical trials in myeloma are not someone getting treatment and the other person not getting anything. The trials that we’re doing, patients are getting at the very least the standard of care treatment. So, I would say that the – yeah. I mean, the clinical trials end up being the best option for majority of patients instead of standard of care.

Katherine Banwell:

Okay. If a patient is interested in participating in a clinical trial, what question should they ask their doctor?

Dr. Usmani:

The question that they should ask each time when you’re at that fork is can you please share with me what clinical trial options I have and compare them. Give me more information about “How do they compare with the standard of care treatments that are being offered?” And if you do not have any clinical trial options, would it be worthwhile, to again seek an opinion at a myeloma center of excellence to see if there are clinical trials available.

And in today’s day and age, you can have a virtual consult with a myeloma center of excellence. You don’t have to even go in. You can just chat with an expert on video and see if a clinical trial maybe right for you.

Katherine Banwell:

Are there common misconceptions you hear from patients concerning clinical trials?

Dr. Usmani:

Yeah. I think the most common perception patients have is “Oh, I’m going to be used a guinea pig for something that hasn’t been used in humans before.”

Katherine Banwell:

In a human before. Exactly.

Dr. Usmani:

So, most of the clinical trials are not first in human trials. Yes. We do have first in human trials where we are using novel treatments in some instances.

But there is strong rational and safety guardrails built around that. And if you’re participating in a first in human study, it’s highly likely that the other treatments have stopped working and there might not be other options. However, majority of trials that patients end up participating in are getting at least the standard of care treatment. So, I think it’s very clear to kind of communicate this to patients that, “Hey, you are going to be getting a standard of care treatment even if you go on the quote unquote control arm. It’s not that you’re getting placebo.”

So, I think clarifying what the protocol is, giving patients information kind of alleviates some of those concerns. But that’s the most common misconception people have.