[Multibilly]

Get tested every year if you have MGUS?

by Multibilly on Thu Aug 15, 2019 4:55 pm

This is an interesting article on how one's MGUS risk of progression profile can change over time:

"MGUS to Myeloma: Study Suggests Risk of Progression Can Change," National Cancer Institute, Aug 13, 2019 (full text of article)

The research is still preliminary, but they are suggesting that one get tested every year if one is found to have a diagnosis of MGUS, even if the diagnosis is "low-risk" MGUS. This is because they found that some patients with low-risk MGUS actually progressed to active myeloma within a year's time.

If you get an physical exam every year, it seems like an easy thing to have your GP also order up an serum protein electrophoresis (SPEP), immunofixation electrophoresis (IFE), and serum free light chain (sFLC) test at that time.

[Foundry738]

Re: Get tested every year if you have MGUS?

by Foundry738 on Fri Aug 16, 2019 11:56 am

Makes sense to me, although there might be insurance coverage issues. That said, I'm pretty sure that insurance covers annual cholesterol testing if you have had high cholesterol and are therefore at risk of developing cardiovascular problems if the cholesterol rises. I would hope the same logic would apply in routine monitoring of important blood components for MGUS.

[Multibilly]

Re: Get tested every year if you have MGUS?

by Multibilly on Sat Aug 17, 2019 10:07 am

I'm sure different health insurance companies in the U.S. have different policies regarding routine screenings. My wife used to be able to get free bone density screenings because she was at risk of osteoporosis. But once she actually had a diagnosis of osteoporosis, insurance no longer covered these screenings at no charge. I'm guessing that same sort of logic would apply for MGUS patients. Namely that once you are diagnosed with MGUS, your screenings related to it are no longer covered at no charge. I know that as a smoldering patient none of my routine screenings are covered, even if they are done as part of a routine physical exam.

The good news is that the negotiated insurance rate for the combination of an SPEP, IFE and SFLC assay are well under $100 (I pay about $75 every few months for a routine CBC, CMP, SPEP, IFE, SFLC and Beta2 Microglobulin screen). But if you don't have access to negotiated insurance rates, then you are looking at something close to $1000 for these same tests.