Does anyone else have MGUS?

@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

@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.

@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

@carlabaz Welcome to Mayo Clinic Connect. It often can be unsettling to hear a diagnosis, right? I don't know that there are specific timelines for us when moving from one stage of MGUS to SMM to full-blown myeloma. For me, I went from MGUS in 2017, to SMM in 2018, to myeloma in 2019; definitely an overachiever!

What protocols are your medical team advising at this point?
Ginger

@carlabaz Hugs to you as well. It is hard, not knowing what is coming and how it will affect us. I'd be glad to help where I can, and it would be good to get a detailed explanation from your oncologist on what all your numbers mean. I plan on keeping a journal of my treatment, reactions (tired days, good days,...). Doctors don't always cross check meds or supplements, to see if some are easier on kidneys or other organs during treatment. Here is a good site for MM info: https://themmrf.org/multiple-myeloma/ . For me, it is best to start treatment before it spreads (a risk with IgA Kappa light chain SMM, less for other varieties).

@kayabbott
Thank you so much for the information. I will have her explain the numbers to me, I don't go back til April. I hope we do start treatment then, no matter what my numbers are. She suggested it at my last visit because my mental state really took a dive. I don't think it was the SMM, think it was just from the outside world. I think a journal is a great plan, I will start that too. Thank you for the link. Going there now.

I have MGUS was diagnosed last October as well by a bone marrow biopsy. Before diagnosis I had intense random sever itching. I was told to stop my hydroxychloroquine to see if that helps which it didn’t. Then diagnosed with eczema, which it wasn’t. Finally they realized it was from the MGUS. I know take Allegra and no longer have hives and itching. Was diagnosed after an ER visit due to fevers for a month, exhaustion and the platelets of 32 low hemoglobin and low white blood count. MGUS is a watch and wait. I also was diagnosed with CCUS.

@carlabaz I know the mental state, not knowing, how long do I have....the record that keeps replaying in my mind. I think that live for the day is important to strive for (still working on it) and finding fun things to do each day. MM is a manageable C. I will find out in 2 weeks if mine is confined to my bones, and I've read that chemo usually starts 10-21 days after (I'll let you know).

@gingerw
That sure was fast from what I was told would happen. How are doing? Do you have the bone splinters? What are they doing to treat the myeloma currently? I am not tolerant to pain, so that scares me. My next visit with Cancer Center is in April, full labs and 24 hour urine test. I had the Bone Marrow test right after I was diagnosed. My mood has been off lately and she suggested starting treatments early for myeloma in April.