Connect
← Return to Does anyone else have MGUS?
Discussion
Comment receiving replies
@carlabaz My BMB last July had 15% or more cancer cells based CD138 staining (CD138 is a protein on cancer cells). That is above the 10% boundary for SMM, but my hematologist thought still MGUS because I don't have CRAB symptoms (maybe kidney [R is renal]). My kappa was 387 then, but now 934. If you have light-chain MGUS, a 24 hr urine test is useful (heavy chain deranged plasma is too large for kidneys, so less damage).I will start I-VRD chemo for high risk SMM next month (after a full body PET scan). I have IgA Kappa light chain SMM with the 1q21 chromosome mutation, not good. It is scary, but treatment has and continues to evolve. Mayo has a zoom support group for people with SMM (another for MM); if you can't find it online, check with a mentor.
Replies to "@carlabaz My BMB last July had 15% or more cancer cells based CD138 staining (CD138 is..."
@kayabbott I haven't learnt to read my numbers yet. I appreciate your blood stats and will compare to mine with notes, this will help me learn. I am having the 24 hour hour urine test in April. I've been easily agitated the last few months and she was thinking maybe she would start my treatments early. She decided on seeing how I got along for another 3 months since I was doctoring with MD too. I don't have the CRAB symptoms yet either. Those scare me. I'll let you know what my numbers are, if thats okay? Hugs
Connect
@kayabbott and @carlabaz
Please contact Teresa Miceli rochester@imfsupport.org to get registered and invited to the myeloma virtual support groups that are sponsored by Mayo Clinic and hosted by International Myeloma Foundation!
It is an awesome source of support and information. Ms. Miceli is an oncology nurse for Mayo Clinic.
Ginger