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A MyMyelomaTeam Member asked a question đź’­
Heart of Texas

I understand it is good for detecting osteoblastic (bone forming) activity, but not osteolytic/osteoclastic (break down) activity such as occurs in myeloma.

My nuclear scan showed some increased uptake in the shoulders, knees, ankles, midfoot, and
first MTP joint of each foot consistent with arthritic/degenerative change. There is slightly increased uptake in the region of the right L4/L5 facet.

I have endured years of upper back, rib, and right hip pain that is being diagnosed as arthritis… read more

March 5
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A MyMyelomaTeam Member

Well, Cheryl, I can't know what is running through your doctor's mind, but I have a couple of thoughts. If your light chain numbers are not in the diagnostic range yet, a bone marrow biopsy is unlikely to show much of anything at this point. What are your current light chain numbers and M-Spike? While a biopsy is diagnostic, it is also invasive, so unless your numbers increase closer to the diagnostic range, my Oncologist/Hematologist told me he was looking for my light chain numbers to go above 100, as that number alone is diagnostic. As soon as my light chains reached that number, we started treatment. That was the end of Oct, 2025, and already I am heading into partial remission with light chains at 8 and M-Spike at 0.01. I believe this is because my Myeloma was caught so early. I was already seeing my oncologist/hematologist for thrombocythemia (too many platelets) and of the kind that I had been warned could, in time, turn into multiple myeloma. Which, of course, has
Secondly, the drugs used to treat multiple myeloma are very potent and can cause some not-so-nice side effects, so if you don't need them, you don't want to get them until you really do. Who knows, you may never progress to the myeloma stage, as the vast majority of people don't. I understand waiting is extremely frustrating and hard. Having a BMB seems like a quick way to make a diagnosis, but it really isn't. My BMB showed nothing. of note, so if I were just going by that, I would remain undiagnosed. I pray you will never need to have a BMB done. Take care! 🙏

March 5
A MyMyelomaTeam Member

Cheryl, we all need to see a myeloma specialist. If your current oncologist doesn't agree, you need to get another one. Have you had a bone marrow biopsy?

March 7
A MyMyelomaTeam Member

Cheryl,
I know it’s almost impossible for you to travel. I’m having similar issues. When I went to City of Hope and saw world renowned Amrita Krishnan, I could have easily seen her by a Tele-medicine visit. She had my records and there was no hands on during the visit, just talking. If a MM Specialist wants to do tests, they tell the local Oncologist to do them. They work together. If your local Oncologist does not want to collaborate with a MM Specialist, find one who will. Sometimes you have to look outside the box.
Paula🌹

March 6
A MyMyelomaTeam Member

Find a MM specialist on your own. Health tree, MMRF etc can help you find one in your area. I had smoldering for 9 years. Back then there was no treatment for smoldering. My nephew is 30 and has smoldering and they are researching trials to put him on. 🙏🏼

March 5
MyMyelomaTeam

How reliable is a nuclear whole body scan in detecting multiple myeloma, especially with light chain MGUS and concerning symptoms?

You're correct that nuclear bone scans are better at detecting bone-forming activity rather than the bone-destroying lesions typical of myeloma. For detecting myeloma-related bone damage Show Full Answer

How reliable is a nuclear whole body scan in detecting multiple myeloma, especially with light chain MGUS and concerning symptoms?

You're correct that nuclear bone scans are better at detecting bone-forming activity rather than the bone-destroying lesions typical of myeloma. For detecting myeloma-related bone damage, imaging tests like X-rays, CT scans, MRI, and PET scans are more commonly used and effective.

MRI can detect myeloma in early stages, and the presence of more than one lesion may support a myeloma diagnosis. PET scans, particularly fluorodeoxyglucose PET, are highly sensitive for visualizing bone lesions at diagnosis. X-rays can show bone loss, lytic lesions, or fractures from bone weakness.

Your nuclear scan findings showing arthritic changes don't rule out myeloma, but they also don't specifically detect the osteolytic lesions associated with it. Regarding your concerns about light chain MGUS and the need for a bone marrow biopsy:

Your symptoms are understandably concerning given your light chain MGUS diagnosis. Light chain multiple myeloma can indeed cause severe kidney damage, and diagnosis can be complicated since serum protein electrophoresis may be negative.

For light chain myeloma diagnosis, a serum-free light chain blood test must show a particular level of excess light chains. Bone marrow biopsy is typically performed when there's concern about high risk of developing another blood disorder or to confirm multiple myeloma diagnosis.

With MGUS, bone marrow biopsy may be done if there's concern about progression, but imaging tests and bone marrow tests are necessary specifically for diagnosing multiple myeloma itself—not just monitoring MGUS. Your situation is complex with multiple symptoms that overlap:

Your anemia, bone pain, fatigue, and nausea could relate to myeloma, but they can also occur with other conditions. Blood and urine tests showing abnormal light chains, along with other markers like anemia, high calcium, or kidney problems, help determine if progression is occurring.

A MyMyelomaTeam member might suggest seeking a second opinion from a myeloma specialist doesn't mean you're dissatisfied with your current doctor—it's about getting specialized expertise for a complex condition. Specialists see many light chain cases and may have different thresholds for when to pursue bone marrow biopsy.

You could frame it as wanting additional input specifically about light chain MGUS management while continuing care with your current hematologist-oncologist for ongoing monitoring.

March 5

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