Dr. Joseph Mikhael:
Hi everybody, Dr. Joe here, Chief Medical Officer of the International Myeloma Foundation, and I'm here to talk today about the top searches regarding this thing called MGUS, also known as monoclonal gammopathy of undetermined significance.
I know that's a mouthful, but hopefully we'll make sense of it. We call it MGUS, some people even call it MUGUS. Whatever your preference is, let's make sure you understand this today. So question number one, is MGUS, which is the better pronunciation cancer? The short answer is, not really. We don't consider it cancer. The definition of cancer is actually a little bit complicated, because there is a spectrum just like we see. MGUS really is the earliest part of the spectrum of multiple myeloma. Multiple myeloma of course, is a cancer of the plasma cell, that cell that lives in our bone marrow that makes our good antibodies. But sometimes we can make just a little bit of abnormal antibody, but not really have the full-blown cancer that causes all the challenges we see with myeloma.
Typically, those crab criteria, or a high calcium, renal or kidney damage, anemia or bone disease, spelling the acronym CRAB. So MGUS by itself is not really cancer. It just means that patients have a little bit of this abnormal protein, but it hasn't got to a stage where it's actually causing damage. And that's a really important feature to help us understand why MGUS becomes myeloma, and what really is, or what causes MGUS. Which brings me to the next question, which is how long can you live with MGUS? Well, believe it or not, even though myeloma is rare, one to 2% of all cancers, MGUS is incredibly common. About 5% of people over the age of 40, if we test for it, we can find this little bit of this abnormal protein. Now, sometimes it's just a tiny little smooch of protein, just a small amount of it, but nonetheless, it is present.
So for most people, they're going to live with MGUS their whole life and some won't even know it, and most, it will never affect their life. But the reality is there are a small subset of patients in whom MGUS will develop into active multiple myeloma. Almost think of it like all the tiny little moles we might have on our body. Most of them will never become a problem, but some of them might become skin cancer over time. So it's very common to have tiny little moles that are probably not worrisome at all. It's very common to have MGUS. But once we know someone has MGUS, we have to follow them. And we'll discuss that, I'm sure, a little bit more as these search items come up. Is MGUS hereditary? And the answer actually is partly so. We know there are certain people that are at higher risk of MGUS.
If you're of African descent like me, your risk of getting MGUS is actually two to three times higher than in white patients, for example. So we know that there is some genetic underpinning to MGUS that we haven't fully figured out yet. We also know that if someone in the family has MGUS, someone is at slightly higher risk. But I say slightly higher risk, because we don't go and start testing everybody because someone is identified with MGUS. We're still trying to sort that out. In fact, the IMF is involved with a huge study, where we've screened almost the whole country of Iceland, to try and understand the genetic connections that there may be in MGUS. But people are indeed at higher risk of MGUS if they're of African descent, or if someone else in their family has MGUS, or even multiple myeloma.
All right, here comes the next search item. Symptoms of MGUS in adults. I could answer this very briefly and say by definition, MGUS is meant to be asymptomatic. So someone has the myeloma protein in their blood at a low level. If we happen to do a bone marrow test, which we don't typically do in most MGUS patients, they have less than 10% plasma cells, because over 10% defines myeloma. But they really shouldn't have any symptoms. Now, the only caveat I would add to this, is that there are some MGUS related conditions where people can have effect on their nerves or their skin, but we typically don't think of those as just simple MGUS, they're an MGUS associated separate condition. All right, let's go to the next search item here. What are the signs and symptoms of MGUS progression? Meaning on that spectrum, someone goes from MGUS, to smoldering myeloma, to active myeloma. And this may be one of the most important points to make about MGUS, which is that we want to catch it before it becomes active myeloma.
We're not at a stage yet where we screen routinely for MGUS. That day may come in the future, and most of us actually believe that we're working towards that. But once someone has identified MGUS, we want to follow them with blood tests to see the change in the blood, before the change in the symptoms. If the signs and symptoms are present, they're pretty easy to remember. The three most common things are that people get fatigue, which is out of keeping with usual fatigue. Two, pain, typically where bones are, especially in the back or in the hips. And thirdly, if the blood test is done, someone can have anemia or a low red blood cell count. Those are the things that we watch for that make us wonder, could this have moved from MGUS to actual multiple myeloma?
All right, two more search items. The next one is, what is the best treatment for MGUS? Well, right now we don't treat MGUS. We give people nothing. We just monitor them. There are some clinical trials ongoing to see, maybe we could do something that might reduce the risk of going from MGUS to myeloma, but we want to be careful. This is a disease, if you will, that isn't a disease. This is a condition that most people will live their whole lives without affecting them. So if we are going to have an intervention for MGUS, we want to be careful. So things being looked at are things like dietary and lifestyle changes, that are likely good changes anyway, that may influence the way MGUS develops into multiple myeloma.
And lastly, how long for MGUS to turn into multiple myeloma? This is a good question, because in some cancers we see that progression very quickly. But in myeloma, this could take many, many years. We don't really know what causes that next step in the progression from MGUS to myeloma. Some patients we know have had MGUS for a short period of time, some patients have had it for many, many years. We do believe that everybody essentially who has myeloma had MGUS before, but it sometimes can be a short course, or sometimes can be a long course.
So lots of interesting facts here. Lots to learn about MGUS. I've given you just the highlights, but we hope this will be helpful as you try to understand this condition better. Especially because as I said, it's so common, and yet myeloma is not so common. Now you probably have more questions. Thank you [inaudible 00:07:19]. And if you do, we want to provide answers for you. Search engines are great, but we want to facilitate the way you search, so that you can get the right answers.
So you can go to myeloma.org, because there we have Myelo, which is a chatbot that can help you. We have an info line that you can call or email. You can follow us on our multiple social media platforms, on X, on Instagram, on Facebook. Often on Facebook, I do question and answer periods for people. And if you are encouraged and motivated by what the IMF is doing to try and improve the quality of life of patients with multiple myeloma, then of course you can donate to us at donate.myeloma.org.
Well, I hope this has been helpful to you as you learn more about multiple myeloma. Keep searching, and we'll bring you the answers.