How is SMM monitored? Should I see a specialist?

What tests should be used to monitor smoldering myeloma and how often should they be done? Smoldering myeloma, we manage it or we observe it exactly the same way like myeloma. So we look at the M-spike, the light chain ratio. We look at if they have anemia or not, they have high calcium or not, renal failure. So we look at all those markers. And then in certain patients, we want to make sure we have a bone marrow biopsy and we looked at cytogenetics and FISH, at least those, if not next generation sequencing. And we want to do imaging because many people, their first presentation is lytic lesions. And we want to make sure we do an MRI or a PET CT scan or a low dose CT scan because skeletal surveys are not good enough for us. So if you're diagnosed with smoldering multiple myeloma, by definition, you should have had all the testing that had been done if you were diagnosed with active multiple myeloma because we need to prove that you have multiple myeloma that is not hurting your body. So you should have had blood work, urine. You should have had a bone marrow biopsy. And you should have had imaging of your bones. And it's not just x-rays. By the time you have something appear on x-ray, 40% of your bone has to be destroyed by a tumor or lesion. So that is a little too late. It's not sensitive enough. So if you do have an x-ray and it's negative, then you have to have at least a whole, an MRI, preferably a whole body MRI. But it could be an MRI of your entire spine and pelvis looking for hidden lesions because if you have at least two small lesions, you should be treated as active multiple myeloma. If that is negative, then you potentially are a smoldering myeloma patient. So you should have all that testing done to prove that you have smoldering multiple myeloma and not asymptomatic active multiple myeloma. Once you are diagnosed with smoldering multiple myeloma, then that's where assessing the risk of your smoldering myeloma comes in handy. So that is dependent on how much of your bone marrow is involved by myeloma cells. That is dependent on how much protein you have in your bloodstream. That is also assessed by your serum-free light chain assay and the ratios involved. And there are different, there's at least three established ways to try and assess the risk for myeloma. The goal of it is to determine whether you have high-risk myeloma or not. If you have high-risk myeloma, your risk of becoming active in the next two years is 50%. And so if you fit that category, you should be watched much more closely. Usually you want to have your blood tests repeated at least the first three months to assess how quickly those blood tests may be changing. After that, you may be able to go to every six months, but it shouldn't go beyond six in terms of following your disease. If you do not meet the criteria for high-risk disease, you can definitely start at six months and possibly go out to even a year in terms of when you repeat your blood test again. But regardless of what your doctor and you choose, if you develop any new symptoms, you need to immediately go see your doctor to make sure that it's not your disease changing. Do you repeat imaging or bone marrow biopsies on smoldering myeloma patients? I don't usually repeat bone marrow biopsies on smoldering myeloma patients unless they have become active. There is no data to show that the change in the percentage of plasma cells from the original bone marrow will determine how aggressive or how quickly this would change. The other thing is that when we do a bone marrow biopsy, we're doing a blind biopsy. If I do a bone marrow biopsy today in one spot and I do the same biopsy just a week later in a different spot, I may get a very different percentage of involvement of your plasma cells. There's patchy involvement. It's very difficult to interpret the bone marrow by itself in terms of if you see 10% one day versus 20% another day, whether that's a true change or not. Unless there's some new reason or new symptom or we're moving to therapy, there's no reason to repeat the bone marrow biopsy in my opinion. In terms of imaging, I think the imaging is something that probably should be considered at least yearly, at least in the first two years from diagnosis because again, you want to determine we're not great at putting everyone in that bucket of high risk. If you happen to be put in a bucket of not high risk but you carry a mutation that perhaps makes you higher risk than we just didn't realize it, you may be at risk of transforming in those two years. And so I recommend imaging once a year. Why is it important for a smoldering myeloma patient to see a myeloma specialist? I think every patient who has smoldering myeloma, it's important for them to at least have a consult with a myeloma specialist because they can help them define am I overt myeloma or not. Am I high risk smoldering myeloma? Am I eligible for clinical trials? Should I be observed more carefully? There are so many factors and it's so complex in myeloma in general and remember myeloma is a rare disease so we want to see someone who specializes in it. I personally say if I have something wrong in my house, I'll get a specialist in it. I will not just get anyone to come and fix it. That's our own body so let's make sure that we get someone who knows what they're doing with our own body. I think it's important for anyone with myeloma, whether it's smoldering or active myeloma, to see a specialist as a second opinion especially. Again, there are a lot of nuances. If you look at the definitions that we're talking about, actually these did not exist five years ago. So in the last five years there's been a significant change in the definitions of smoldering and active multiple myeloma that are hard to keep up with. I think if you're seeing your regular doctor who may see two to five cases a year, they may not be completely up to date and they may still be functioning under some of the older data. So I think it's always a good idea for you to just get a second opinion and make sure that everything is being done appropriately.