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October 12
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Answer Summary

Members discussed whether a PET scan and bone marrow biopsy are both needed every year to monitor for multiple myeloma returning, with the... Read more

Members discussed whether a PET scan and bone marrow biopsy are both needed every year to monitor for multiple myeloma returning, with the community agreeing that it depends on the type of MM, individual lab results, and the doctor's guidance. Several members shared that blood work is often the first indicator of MM activity, with PET scans and bone marrow biopsies ordered only when labs trend upward, while those with non-secretory MM noted they require more frequent testing. A recurring theme was the importance of seeing an MM specialist rather than a general oncologist to get the most personalized and effective monitoring plan.

A MyMyelomaTeam Member

I had numerous bone marrow biopsies prior to my transplant but since then, only annual PET Scans - going on almost 7 years now!

October 12
A MyMyelomaTeam Member

Once my labs came down, there was no reason to do an annual bone biopsy. However, I do get an annual PET scan so they can check for lesions- which I fortunately have none.

October 13
A MyMyelomaTeam Member

For years I’ve been getting the clonoSEQ Blood Test Quarterly.

As long as it remains MRD Negative at 10 -6 (no cancer per million cells tested), I don’t get an Annual BMB, No Annual PET/CT and remain on No MM Maintenance Meds.

In 2021, I was Stage 2, 5915 IgA Kappa with t4;14 high risk.

The PET/CT uses Radiation and a Radioactive Tracer. Radiation can cause DNA damage. Use it when MM Active but keeping its use, and other Radiation Testing, to a minimum is safer.

It’s also possible to have a BMB where, especially when there’s low MM Activity, where there’s no Bad Plasma in an area that gets sampled. For best results have the BMB done with a fluoroscopic guided extraction, under light sedation.

When you get a Blood Sample clonoSEQ MRD Test, if it finds any MM Activity, it’s known as CTCs (circulating tumor cells) that are being created by your Bone Marrow or an Active Bone Lesion Tumor.

If my Blood Sample clonoSEQ ever shows Positive Activity (typically over two Quarterly Tests), then I’ll follow up with a PET/CT and MRI and the necessary Treatment Meds, short term and then return to Monitoring Only, without Meds, as soon as I return to Normal Labs and MRD Negative again.

October 13 (edited)
A MyMyelomaTeam Member

With MM, the tests depends on what kind of MM you have. For example, my husband has non-secretory MM. this means that the blood tests are not good to determine whether he's better or worse. He must have both scabs and bone marrow biopsies every three months. He's been doing this for 11 years! It also depends o. What your myeloma specialist says you need to do. No one formula applies to all. That is why I say, please, please find an MM specialist, not a regular oncologist. Your life DOES depend on it!

October 12
A MyMyelomaTeam Member

Goodmorning Juanita Phillips from Memphis TN. You and your Doctor should be discussing your issue to determine if a bone marrow or a PET scan is needed. They are not done every year. It can be determined from blood work if the Myeloma shown back up. Talk to you medical team. God bless🙏🏽

October 12

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