Does anyone else have MGUS?

@thencea
That’s a lot of data to digest. I have taken a very conservative approach with my MGUS dx testing. When we (hematologist/oncologist) discussed diagnostic testing, we opted to wait on a bone marrow biopsy because my kappa/lambda free light chains analysis is so stable. My question was at what level of progression would we stop watchful waiting and aggressively treat? If we are far from that threshold, what is the health benefit?
So…some of our MGUS members have FISH data to compare, but many, like me, do not and watch Kappa/Lambda values and the ratio until those values rise to the threshold of concern. I also get regular bone scans to look for lesions and they monitor my kidney, liver and measures of blood health every six months.
It is, statistically speaking, likely that most of us with MGUS will not progress to MM. Have you spoken to your specialist about what he or she considers to be the threshold of concern?

As I have posted before, I have had MGUS since 2002 - maybe longer - I suspect longer. My numbers have worsened but I have eschewed bone marrow biopsies and CT scans.
Some myeloma specialists are leery of the current clinical trials that start treating higher risk MGUS and SMM patients since no one really knows which of these patients will progress. The concern is that the algorithms that are used to make these decisions do not categorize patients into the same risk buckets. This information, which my MM specialist lectures about and espouses, has certainly made me much more relaxed.

My IgA kappa MGUS was diagnosed 8 years ago. Still asymptomatic although the kappa is now at 300 and kappa/lambda is 29. I have one mutation that increases my risk of it progressing, 1q21 gain (chromosome 1, long arm [q], location 21, and gain means one duplication). My BM plasma is at 15% but my oncologist says still MGUS because all my bloodwork and other tests are good. I try to focus on things in my life that I have control over because stress is bad for us. Getting enough exercise, fun, healthy food, and chocolate are important.

Hello all, I was diagnosed with MGUS in 2023 due to iron depletion. I had a bone marrow test, and it basically confirmed what the blood work reported. One year later the tingling and coldness in my feet has started, some tingling in my hands as well. Though I am still working, not quite ready for social security but close. So dealing with MGUS and now neuropathy life is certainly changing for me. Any and all experiences and thoughts are welcomed.

@natelew
Sorry to hear about the neuropathy. I’ve been trying to get a neuro appointment for over a year now. Here we have a shortage of neurologists and getting an appointment is like getting a golden ticket to Willy Wonka’s candy factory.
I will finally see a neuro guy next week. We’ll see if he offers any symptom relief.
Is your neuropathy being treated?

I was diagnosed in 2023. Bone Marrow biopsy showed MYD88 gene mutation thus diagnosed with Waldenstrom’s Macroglobulinemia. Am still on “watch and wait.” Doctors believe covid shot caused it all.

Hello:
I have wondered if the covid vaccines triggered my mgus in 2021, after 2 moderna vaccines, followed by 2 boosters. I also developed proteinuria about the same time which resolved completely a few months after the last booster in 2022.
I have no evidence but am very curious about your doctor’s thinking on the possible connection.
Thanks and best to you.

Hi Patty, I’ve just been diagnosed with MGUS, have read & learned much about it, found this remarkably helpful online forum, and am scheduled to see my local hem/onc of choice Dec. 19. I wonder what goals I would be wise to have for that first appointment, given what others have learned from their experience.

I got sick after my last Covid vaccine, which was Pfizer. All the others had been Moderna and I developed symptoms and I have MGUS currently. I’m on wait six months for another blood and CAT scan and possible bone marrow biopsy. I am convinced the vaccine made me ill. I am so sorry that you are going through this.

I was tested for polyneuropathy (PN) 8 years ago because I fell a lot that year. PN is associated with a few things, like the celiac I have, and MGUS. I subsequently tested positive for MGUS. I probably had MGUS for a few years, but launching myself down stairs had the positive (?) effect of detecting it. I had a BM biopsy this summer and now have 15% plasma cells and the 1q21 gain mutation, but no symptoms and doctors says still MGUS. MGUS has no known cause(s), just possible; it likely varies from one person to the next.
https://www.melbournehaematology.com.au/fact-sheets/mgus-monoclonal-gammopathy-of-undetermined-significance.html
https://www.cancer.gov/news-events/cancer-currents-blog/2019/mgus-multiple-myeloma-progression-risk