I was introduced to multiple myeloma (MM) when my 53 year old daughter was diagnosed with full-blown MM. I, at 79, was diagnosed with MGUS about 7 months later, after taking blood tests for what I thought might be neuropathy, knowing that my daughter had similar symptoms.
To make a two year story shorter, by the time my daughter was diagnosed she was experiencing extra medullary effects of myeloma, had a compression fracture of her vertebrae and bone lesions throughout her body. It was the compression fracture that got her attention. It was fortuitous that she and her family had moved to within 50 miles of the Jacksonville Mayo Clinic 6 months prior, and so they treated her for two years, during which time she went through 9 lines of treatment, each one becoming refractory, including T cell transplant. She had been diagnosed as triple risk, meaning she had three of nine risk-markers. So the prognosis was never good, but she fought valiantly for those two years. There were many lessons learned along the way, and we - her parents – were lucky to spend about a third of our time with her during this period.
As indicated above, I was diagnosed with MGUS, igA, Kappa, and put on a schedule of visiting an oncologist every 4 months. Within a year I had had a pet scan, mri, skeletal x-ray scan, and a bone marrow biopsy. Unlike my daughter, I had no risk markers identified. As my numbers slowly progressed – in just 18 months - I got pushed into the smoldering myeloma category, primarily because bone marrow showed a greater than 20% occurrence of myeloma. However CRAB criteria have not been fulfilled yet. I am about to have my second pet scan.
What is curious to me and should pertain to the larger myeloma community: What is the progression of myeloma? Does everyone start at MGUS, and then proceed to smoldering, and then (maybe) to multiple myeloma? It’s a hard question because you do not feel the symptoms until something like a bone breaks, or extra-medullary shows up. Or you just luckily have a blood test which alerts you to the possibility. So, did my daughter have MGUS and SMM for years before her diagnosis? The fact that once we discovered it, it was virulent and very aggressive and her numbers would peak very quickly when she went refractory, I think probably speaks to her high-risk category. So, I would think that there are different rates for the progression, but I also think that for everyone there is a progression; i.e. - you don’t just start out with multiple myeloma. And this speaks to the needs that have been expressed in many of these postings that we need a method for identifying the beginnings of myeloma much earlier in the process, when we might therefore have the opportunity to slow it down before it does a lot of damage.
In my personal case, I’m very analytical and have trend plots for all my myeloma numbers; they are slowly creeping upward. What would be great to find out is if there are any data that guesstimates prognoses based on the number of risk factors one has.