Does anyone else have MGUS?

@gingerw I have MGUS since I had a broken hip and replacement last year. M spike showed one time. Oncologist happy that blood work is normal. I am elderly at 84 but still competent. I have a doctorate in nursing. Yet I am very unsatisfied faith advice from MDs . All other pre cancer conditions do something or do some meds etc to prevent progression. Not MGUS.! MM is. Deadly cancer. Why no intervention at MGUS. Also thoughts on Tumeric.. Thanks Chris Malloy

@sunsetchris The rate that MGUS may advance into smoldering multiple myeloma, and then into multiple myeloma, is pretty slow, for the vast majority of people. There are many forms of myeloma, that is why it is called "multiple". And another reason why there is no set protocol to waylay the progression, as it is many-pronged. Does that make sense? It is like finding a needle in a haystack.

Glad to hear your blood values are normal.
Ginger

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.

@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!

I have had it since 1996. I have recently had low platelets and my immunoglobulins are very low. The lab results show ‘observation’. It is very worrying.

I found out a year ago I had SMM. Mine seems to progressing quicker than they thought it should. I have my blood numbers, just don't know how to read them. At first I didn't want to know how to read my numbers, too scary. I've accepted it now. My BMB came out okay, so I was glad of that.

@carlabaz Welcome to Mayo Clinic Connect. It often can be unsettling to hear a diagnosis, right? I don't know that there are specific timelines for us when moving from one stage of MGUS to SMM to full-blown myeloma. For me, I went from MGUS in 2017, to SMM in 2018, to myeloma in 2019; definitely an overachiever!

What protocols are your medical team advising at this point?
Ginger

I have MGUS was diagnosed last October as well by a bone marrow biopsy. Before diagnosis I had intense random sever itching. I was told to stop my hydroxychloroquine to see if that helps which it didn’t. Then diagnosed with eczema, which it wasn’t. Finally they realized it was from the MGUS. I know take Allegra and no longer have hives and itching. Was diagnosed after an ER visit due to fevers for a month, exhaustion and the platelets of 32 low hemoglobin and low white blood count. MGUS is a watch and wait. I also was diagnosed with CCUS.

@carlabaz My BMB last July had 15% or more cancer cells based CD138 staining (CD138 is a protein on cancer cells). That is above the 10% boundary for SMM, but my hematologist thought still MGUS because I don't have CRAB symptoms (maybe kidney [R is renal]). My kappa was 387 then, but now 934. If you have light-chain MGUS, a 24 hr urine test is useful (heavy chain deranged plasma is too large for kidneys, so less damage).I will start I-VRD chemo for high risk SMM next month (after a full body PET scan). I have IgA Kappa light chain SMM with the 1q21 chromosome mutation, not good. It is scary, but treatment has and continues to evolve. Mayo has a zoom support group for people with SMM (another for MM); if you can't find it online, check with a mentor.

@kayabbott and @carlabaz
Please contact Teresa Miceli rochester@imfsupport.org to get registered and invited to the myeloma virtual support groups that are sponsored by Mayo Clinic and hosted by International Myeloma Foundation!

It is an awesome source of support and information. Ms. Miceli is an oncology nurse for Mayo Clinic.
Ginger