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I have smoldering multiple myeloma. Not sure how long I had MGUS before it progressed. Found totally by accident. M Protein is 2.0 and 15% plasma cells in bone marrow. Many do not progress past MGUS. This is a condition they will have the rest of their lives. Get tested often. Follow ups often and wait and see what develops if anything. No symptoms or illness with MGUS. So catching it with blood tests is usually by random. I too was taken aback seeing Hemonc doctor. Felt overwhelmed like this is it. But it’s been stable now for over a year. No progression or lesions and calcium normal. Abnormalities in M Proteins. Super high IgA. But they haven’t moved much. Blood work is due in May. Always a tense time waiting for results. A lot of this is mental. It’s a roller coaster of emotions.
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Thank you for sharing.
@msh466
I think anxiety leading up to our schedule blood tests is pretty universal. How do you cope with that stress?
Hello. I am new to SMM since march 25 and have my first follow up appointment with the doctor next week. MRI marrow scan was negative thankfully. I am having increased burning neuropathy in both hands and some thing new that feels like a very low level deep ache throughout my body. As though my bones were swollen. And I am extremely fatigued. I have been offered a clinical trial for Linvoseltamab to begin treatment. The MGUS is now “significant”. Smoldering is a strange word and I can’t help but imagine I am slowly falling deeper into this new kind of hell. I have so much and so many supporting me. Great doctors. Loving family and friends. Getting educated and maintaining balance is super challenging. I did have a great conversation yesterday with someone at MMRF about beginning treatment so early. It is really helpful to read all of these threads. I remember the years I had MGUS and sure wish I was still there and I remember one thought I had. Enjoy this while it lasts. Just in case it does progress. I can tell my self the same thing now. Enjoy this while it lasts. Just in case things change.
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How do they test for plasma in your bone marrow?