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 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💓💖💕
Annecares, my GP became concerned about the high protien in my urine and sent me to the oncologist I have now. I was diagnosed with Mgus, but he said my numbers were already high in that category. I was watched for basically two years before I started chemo this summer. So I never worried about the smoldering stage. Well I did but only when I had appointments looming.
I was diagnosed with having Kappa Chain Light myeloma after a bone marrow biopsy. I seem to be responding well to the chemo and all my numbers are dropping. Oct. 13th I meet with another oncologist to see what my next step of treatment will be.
I also thought for two years I was dealing with pulled muscles and bone pain. In reality I had three vertibre fractures in an 8 month period. I thought this was all due to my overzealous gardening. Physical therapy helped but they were not dealing with the fact that I was dealing from bone pain due to the mm and chemo and kept saying it was muscular pain.
My past three months have been good. I have back problems and discomfort but rarely pain. I am able to get things done again around the house. I move slowly and carefully.
My problem was that no one explained to me the physical problems that may be associated with mm. I finally, through this site realized all the pain I was experiencing was because of the mm and also the chemo.
Thank heavens for this site and the people who are participating on it as they really helped me start to understand this disease better.
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