← Return to Does anyone else have MGUS?

Discussion
mjlandin avatar

Does anyone else have MGUS?

Blood Cancers & Disorders | Last Active: Mar 3 5:40pm | Replies (1163)

Comment receiving replies
Profile picture for wesleym @wesleym

Chris - Sorry, I don't agree with much of what you write. First of all, there is a TON of reliable, publicly-available information on MGUS - risk factors, severity in terms of likelihood of progression, appropriate monitoring and much more. For just one source, the International Myeloma Foundation - for MGUS specifically, https://www.myeloma.org/search - is a great place to start.

Second, MGUS absolutely has a standard of care. "With certain lab values, do not treat but monitor as appropriate" IS a standard of care. You don't treat every condition for which the potential exists, because treatments themselves have risks which must be balanced against the risks that the condition presents. Perhaps a more familiar example (at least for men) is prostate cancer. Approximately 80% of men age 80 and older have prostate cancer (source: https://www.ncbi.nlm.nih.gov/books/NBK470550/), but very few of them will actually be treated if diagnosed at that age. Why? Because they are far more likely to die from something other than prostate cancer. As I'm sure you've read, here if not elsewhere, the average MGUS patient is unlikely to ever progress to MM. And first-line MM treatment, which is far more easily tolerated than it was even 10-15 years ago, nonetheless has its own risks. First do no harm.

Finally, there are ongoing studies relative to slowing progression, though those studies are directed to SMM patients (rather than MGUS) because of their significantly greater risk. A couple are promising, but AFAIK none have shown results of ultimate benefit (meaning not only slowing progression but extending survival).

I am 74, with high-risk MGUS that seems to have very recently morphed into SMM (it's a continuum) depending on what criteria one uses. When I was first diagnosed (about two years ago), I felt similarly to the way you feel - there's gotta be something to do about this. And there is - keep your weight down, eat well, exercise, get enough sleep. In other words, live a healthy life.

Jump to this post


Replies to "Chris - Sorry, I don't agree with much of what you write. First of all, there..."

@wesleym Nicely thought-out reply. I agree with you 100%. I was just diagnosed with SMM. "Watchful waiting" is a treatment. So is living a healthy life. Good luck to everyone!