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Blood Cancers & Disorders | Last Active: 9 hours ago | Replies (927)
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The 1q21 gain is just more info that I try to compartmentalize and not stress over. It would be nice if the curcumin was chocolate flavored. I am still asymptomatic although my kidneys might be getting slapped around a bit by the kappa proteins (GFR is decreasing a bit). Not at any stage where I could be in clinical trials yet. I mostly try to have fun, work out, do hobbies, and not stress over what might be lurking over the horizon. Having been an avid cyclist I already am familiar with lurking things coming at me. The 3.1 mg/day curcumin (lipid and peperine) aren't causing GI or other problems and I'll see with next week's bloodwork if it is having any effect on kappa or other results.
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Hello kayabbot! I have been diagnosed for over 3 years with mgus, initially biclonal (IgM lambda, IgG kappa, but also once IgG lambda). Now my latest tests show no identifiable monoclonal protein but I do have elevated Lambda (5.36 g/dl I think is the units).
I was given a BMB at that time and while it showed small percentage (1-4%) the FISH studies showed a Tp53 mutation and a gain of 1q which was terrifying. I went to 3 MM specialists who said those mutations were not significant because they were around 10% of the cells. I have been told repeatedly that it is doubtful that this will ever progress and I don't need to worry about it. I haven't had any other bmb but did have a full work up of complete pet/ct scan, mris and skeletal surveys.
I have finally let go of the extreme anxiety, yay! I wish I had never had the testing done as I continue to have no symptoms. I agree we should put it out of our minds and live as healthy as we can. I am 66 and hoping to live a lot longer.