WOW. Glad I just found this group. Lots of info. Like so many, my MGUS was diagnosed pretty incidentally. In October of last year, 2022. My Primary Care Provider (PCP) noted my having mentioned experiencing a bit of neuropathy in my toes (did a tuning fork test for vibration) so he said he wanted to run labs for MGUS as that is an early indication. I was like "Yeah, right, as if I could have it too?" I am a 65 y/o, thin, 6’0”, white woman with ancestry from the British Isles and no family history of MGUS/MM. Other than my age, I supposedly have none of the risk factors.

Let me give you a bit of other history that is relevant to my experience, my beloved husband, Steve died of Multiple Myeloma on 24 July 2022. He was diagnosed with MGUS in early 2017. We thought all would be fine with the reported odds of 1% per year. I now believe he was in the smoldering stage of MM and was under diagnosed by a supposed expert once in Asheville, NC - I will name names because he has moved to Charlotte and I believe he failed us = Raymond Thertulian. He never did a bone marrow biopsy to establish plasma cell levels, 24-hour urine for Bence-Jones, PET for lesions, despite initially elevated labs such as the IgA of 785 - IgA is the more aggressive MGUS/SMM. He was getting labs every 3 months and all relevant labs were elevating. Dr. T continued to say all was well. Sadly, I didn't know then what I know now. Anyway, Steve got the official diagnosis after he experience three compression fractures (CF) on 20 October 2021, he ended up with nine CFs and went from 6'2" to 5'10". It was Stage III, High Risk. The course of his illness and demise was 14 months of horrible.

Being positive is absolutely imperative. Steve wasn’t. I am determined to be positive despite mine being IgA Kappa MGUS. So, bizarre that I too have MGUS. No familial history. No known pesticide exposure. No known petroleum product exposure except a natural gas range. Just got rid of that and got an electric induction oven. Benzene, the by-product of petroleum combustion is thought to be included on the list of potential environmental exposure issues. I meet someone almost every day with MGUS. Something is going on in our environment.

So, instead of focusing on Dr. Goggle, I have a local hematologist/oncologist who is quite brilliant that I see every three months for now. I have consulted with Dr. Paul G. Richardson from Dana Farber in Boston who is very strong in the MM research realm. I will visit him again in December. He said, “Keep your stress down.” I am also on the research study out of Sloan Kettering in NYC conducted by Dr. Urvi Shah with the hypothesis that a whole food, plant based diet and/or the supplements of curcumin/turmeric may postpone the progression of MGUS / SMM to MM (NCT05640843). Clinicaltrials.gov is easy to navigate and very interesting. On top of that, I am an actively employed RN working in my hospital’s research department. Will retire within the next to nine months. I also have benefitted from my involvement with the HealthTree Foundation for Myeloma at http//HealthTree.org/myeloma.

I requested and have had a recent bone density test and have no signs of osteopenia nor osteoporosis at this time – baseline testing upon diagnosis is important. As is having the bone biopsy with FISH to evaluate genetic involvement and plasma cell levels, PET scan to rule out lesions and a 24 hour urine test. Without those you just won’t know where you truly are at in the MGUS continuum. We must be or have a strong advocate to achieve the best care.

I’m praying for healing. Living life to its fullest. Looking for the sunshine and if I can’t find it I make it.

Those are my current insights. Wishing you all well in this journey none of us chose to take. Thank you.