Anyone here been diagnosed with MGUS

[kelmad]

hi there, just wondering if anyone has got MGUS and what treatment/follow ups they're having.
I have Sjogrens, ITP ( in remission) and most recntly this, would be nice to hear other people's experiences

thanks

[SickMomma_PDX]

I was diagnosed with MGUS in fall 2007. They run bloodwork on me every six months or so, and my numbers have been ever-so-slowly creeping up but are still low enough that none of my doctors is concerned. The vast majority of folks with MGUS never develop Multiple Myeloma. So while it's important to be monitored and your levels checked at least annually, there's nothing to be done about it until/unless you develop MM.

Hope that helps a little!

[mgus]

I am a 34 yo female diagnosed with MGUS. No treatment was given, just 3 months check-ups to see if it evolves.

My doctor said that 2 of his patients with MGUS were "cured" in a few years with no treatment - the protein were not  detected again in their blood. Both were patients under 40 yo.

[Nancy165]

I started out with smoldering Myeloma.  I did lots of research and found Huntsman Cancer Institute, Salt Lake City, UT has a Myloma Clinic.  Dr. Tricot (tree-co)  is from Belgum and is wonderful.  He specializes in Myeloma.  He started me on Pamidronate infusions to prevent bone loss.  My IgG is in the 3300 mg range and the bone marrow was at 13% Myeloma cells and the Kappa/Lambda freelight chains were high (can't remember at this time how high).  The total proteins were at 9.4 when treatment began.  Now My bone marrow has only 5% Myeloma cells, the IgG protein is still about 3100 mg range....but, the kappa/lamda freelight chain are NORMAL for the 1st time in almost 2 years.  I live in Colorado, and do my treatment here, but go to Salt Lake City every 6 months to see Dr. Tricot.  He is worth it!   Research Hunstman Cancer Institute for yourself.  You'll be impressed!  Nancy

[sherrill710]

Hi I have MGUS, the bad proteins! My current treatment is checkling all the proteins every three months, and yes I'm a candidate fro Multiple Mylenoma...

[shammyd]

My stoopid, but what is MGUS?