I was diagnosed in with Smoldering Multiple. Myeloma or around 8/24. Blood work has been done and it was way off. Then came the Pet Scan, Bone Marrow Biopsy, and more labs. I am horrible with dates so please bare with me. I last saw my Oncologist 11/13/24. Recently I had an appointment scheduled to see him but they canceled saying he was out of town. I also had a primary appointment scheduled. My primary ordered the usual pre-appointment labs. On the lab slips my primary was the only one… read more
If you are looking at free light chain type myeloma then you look for the ratio of the lambda and kappa. They can both go up due to something else going on in your body. If the ratio is way outside the normal range then that indicates myeloma along with your kidney numbers. Light chain myeloma will affect the kidneys faster than other types of myeloma. I have free light chain kappa and the first indicator I had on bloodwork were my eGFR, Creatinine and BUN all being off. By diagnoses my kidneys were close to failing.
Kenneth,
I see my Hematologist every 3 months and I am Smoldering. If you are Smoldering and your labs look great and don’t change for a long time, they might stretch that to 6 months, it sounds like you were just diagnosed. Standard blood tests that a Primary care doctor orders are fine, but they need to be supplemented with MM special blood tests. The Multiple Myeloma Research Foundation has a great website which tells you what tests need to be ordered. My first 2 Hematologists were not MM Specialists. I see Moffitt agreed with your diagnosis, but they would normally see you every 3 months, so not sure what is going on. I have not had a Pet scan, so I’m wondering what your labs are like that they ordered that. Maybe the Pet scan looked so good, they decided to see you in 6 months. The problem is, MM is sneaky and can change quickly, hence the 3 month visits.
Paula🌹
My primary an hematologist usually have one test that overlaps; other than that one test they are monitoring different items. I am aware that they do review each other's test and reports.
Hi I agree with the others for smoldering the standard is every three months and that includes the Kappa and Lamba each time. My IGA, IGG and IGM is also tested each time. I would questioned them if they are not doing these tests, these are very specific to MM. Your kidney tests could be anything and I beleive you pretty much already have MM for your Kidney's to be bad. Other things they text are your calcium. Albumin and your creatine. If these are not being tested I would question them. Also when my family doctor was initially doing it she had no clue what they meant. Definitely need an MM expert interpreting them. You can educate yourself on here on how to read them. You may want to look up the 20-2-20 test. The last number your can only get through a bone marrow biopsy. The first is the ratio between your Kappa and Lamba and 2 is your m protein levels. You need to advocate for your self. My first year with MGUS everything was messed up and it was only when I looked into things did they get straightened out. I was then upgraded to smoldering. Best of Luck
You need to find a good oncologist that specializes in Multiple Myeloma the same thing happened to me till I found a doctor who specializes on MM. I won’t rely on a primary care doctor they don’t have the experience or time to explain everything as to how to deal with MM. Best wishes 🙏