When one is diagnosed with MM, is MGUS and/or Smoldering MM always a precursor which goes undiagnosed until the full-blown MM diagnosis? Just wondering how long before my husband's MM diagnosis in March 2019 might he have had MGUS and/or Smoldering MM and no one identified it. He is of the opinion that he had it long before, since the pelvic lesions and the spine vertebrae deteriorations had advanced so far.
My Internal Medicine doctor since 1995 saw a raised protein level in a routine blood test in 2016, scheduled a 24-hour urine protein test and diagnosed MGUS. He then referred me to my current MM specialist/hematologist who monitored me quarterly until my Paraprotein (M-spike) jumped to 3.4 and after a bone marrow biopsy, confirmed my MM diagnosis. Not all MGUS patients progress to full MM and to my understanding, not all MM patients started with MGUS or Smoldering Myeloma. I suspect many people do not get physical exams on a regular basis, so their first diagnosis of MM comes as a result of being seen for other problems (bone fractures, renal problems, anemia, etc.).
Generally speaking, most of us in the US begin the same type of induction therapy regardless of the "stage" of the disease at time of diagnosis. Of course, patients with bone lesions or solid tumors receive treatments specific to those symptoms, but our blood is treated similarly in mist cases. The great news is that newer 3 and 4 drug regimens available today are resulting in deeper responses in many patients. Instead of 12-24 months of remission, we're seeing 3-10+ years. My doctor speaks of 10-20 years and who knows what new treatments will be available then. We need to support and pray for our group members and friends whose MM is more severe and difficult to treat. And we all can hope for and promote more progress and some day maybe even a "cure" for this incurable disease of ours.
Thank you for the information. I also think I probably had MM before being diagnosed. I always had a lower than normal platelet count for several years. I then started swelling in my feet and ankles and went to my primary care doctor. My blood pressure was very elevated ad and urine test came back with blood. I was then sent to a kidney doctor and he's the one that diagnosed my MM after a kidney biopsy. He referred me to the oncologist/hematologist and I had a bone marrow biopsy. I have had MM since 2012 and am doing good.
I was diagnosed with MGUS in June 2017 from blood tests done when I had neck surgery. I was watched every 3 months. In January 2020 I went for a second opinion and was told I should have been diagnosed Smoldering MM from 2017. I started chemo in July 2020. My Dr said there are so many factors that the lines between MGUS and SMM are always changing. It's very dynamic and the treatments are always updating. No specific time line but hopefully they stay on top of it. Good luck.
Yes, certain bloodwork and testing for SMM isn't done unless you have certain issues. I was referred to an oncologist cause my gastroenterologist notice swollen lymph nodes on my neck and I had a hard time swallowing and all the test she took came back negative. The oncologist them did certain blood work to see whether lymphoma or MM was an issue even if I didn't have any symptoms. The bone marrow biopsy confirmed Multiple Myeloma which was only at 12%, he felt I was also asymptomatic and farther testing showed the my bones are still fine, so I have SMM. If I didn't have certain issues I would have never gotten this bloodwork or a bone marrow biopsy.
Yes like DBscott said, there is a webinar today at 12 noon on MGUS and smoldering. Through myeloma crowd. Myeloma is detected on a serum protein electrophoresis. It's not usually done unless there is a cause, or you have a great doctor that suspects. I'm sure we all have issues for years. I had 90% myeloma cells in my bone marrow and a hemoglobin of 4.6. Denial is not just a river in Egypt. But who knew? I don't smoke or drink, exercise and mostly eat healthy. My sister also has MGUS. I'm thinking there is a myeloma gene that they haven't discovered yet. Anyway, going to do the best I can to advocate for myself and not look back💓💖💕
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