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Does anyone else have MGUS?

Blood Cancers & Disorders | Last Active: 14 hours ago | Replies (854)

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@pmm

@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?

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Replies to "@thencea That’s a lot of data to digest. I have taken a very conservative approach with..."

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.