Keeping an eye on myeloma by checking in regularly with an oncologist

I just had my quarterly tuneup and oil change — not for my car, though. For me.

Just like a car needs regular maintenance, a multiple myeloma patient needs regular check-ins with an oncologist. This is true even for those who, like me, are six years into a stringent complete response and are off all maintenance treatment. While we keep getting closer to a cure, we don’t have it yet. Relapse is a real possibility, but early treatment can make a difference.

Eternal vigilance is the price of continued good health.

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For me, that vigilance includes lab visits for blood draws. I was getting those monthly after going off maintenance treatment in 2022. My doctor wanted to keep a close eye on me, since it was a little less than three years since my stem cell transplantation.

My monthly blood work turned out to be only a little more interesting than watching paint dry. Aside from glucose numbers bouncing in and out of the high range, the results were unremarkable. So the testing schedule was revised to every three months, coinciding with my office visits.

Just like a mechanic checks a car’s oil, coolant, transmission fluid, and everything else needed to keep it running, these regular tests are a way to check the body’s systems — from how many blood cells you have to how your kidneys and liver are functioning. And, of course, to check for myeloma cells.

Test results are available to U.S. patients almost immediately through online portals. Reading them can be a little scary if you don’t know what you’re looking for, but there’s a lot of help available. Your doctor is your first guide. My doctor’s office has called me before my results reach the portal if something needs to be investigated further.

If you’re just trying to understand the results, the International Myeloma Foundation has a phone line you can call: 800-452-CURE (2873) in the U.S. and Canada, and 1-818-487-7455 worldwide. And both the Multiple Myeloma Research Foundation and the HealthTree Foundation have online guides for learning your labs.

My super-simplified method of reading labs

Here’s what I’ve been doing since I was diagnosed: I look for anything marked “abnormal” and look up anything I don’t understand (which isn’t much these days, as over time, I’ve learned what the results mean).

There are some things I expect to see, and they were in my latest labs. My platelets were low as usual due to my immune thrombocytopenia (a subject for another day). The same is true with my immunoglobulin panel. These numbers have been low since my stem cell transplant, though not low enough to require any additional treatment.

My light chain test came up completely normal. I’m still waiting for my immunofixation electrophoresis results, but I expect to see no evidence of monoclonal proteins (also known as M-proteins, paraproteins, or an M-spike). Those haven’t shown up for six years.

It’s a pretty boring set of lab results that are normal for me. Like I said, it’s only slightly more interesting than watching paint dry.

I know that some patients in stringent complete response have far more testing than I do. Some report having annual CT and PET scans, while others get annual bone marrow biopsies. So, during my checkup, I asked my oncologist if I needed any other tests.

He thought about it for a moment and told me no, since I’ve had no symptoms indicating a relapse. We’ll keep monitoring through regular blood tests, and I’m fine with that, as I’m not eager to have another bone marrow biopsy!

He also noted that a wide range of treatments is available to me in case of relapse. He believes the future challenge will be deciding which of the many paths to go down. The choices include Darzalex (daratumumab), CAR T-cell therapy, and even another stem cell transplant. For now, though, he said I should keep doing what I’m doing, although to be honest, I’m not really doing anything!

If only it were this easy to keep the family car in good shape. All in all, it’s a nice way for me to end Myeloma Action Month: with a good checkup and positive options for the future.

Note: Rare Cancer News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rare Cancer News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to rare cancer.