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What Has Been Your Experience With No Maintenance Treatment After SCT And MRD-neg?

A MyMyelomaTeam Member asked a question 💭
Olympia, WA

If you came out of SCT MRD-negative, did you NOT do maintenance therapy?

If so, How often do you repeat the following testing: labs, including SPEP? Bone Marrow Biopsy with ClonoSEQ? Full Body Pet Scan?
If you have relapsed, what treatment did you get then?

May 2 (edited)
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A MyMyelomaTeam Member

I am 2 years out from STC and on maintenance Revlimid and have had a complete response. I have a BMB and PET scan annually. Labs were monthly but are now being reduced to every 3 months. My oncologist and I discussed how long I would stay on maintenance. Since I am tolerating the Revlimid well we are going to shoot for 1 more year of maintenance and see what happens.

May 2
A MyMyelomaTeam Member

The testing regiment that KLINTL is on is very typical after the first year. And KLINTL I am so happy it is working for you.
I easily diagnosed my relapse using my blood tests. First, demand that they always perform a full myeloma panel of all 5 tests. Historically track your results either with their medical online portal or a spreadsheet.
Make a note of the major MM markers when you were first diagnosed. And as you are being tested, see if your numbers are increasing back up again.
The best marker is the M-Spike protein found in the SPE test. These are also called paraproteins and the results should have a doctors comment about which region (gamma or lambda) they were found.
The other test us Immunoglobulins test that measures IgA, IgG, IgM. Myeloma cells mature and turn into fake Immunoglobulins. My initial IgA was 3800. After SCT it was 30. Then over 10 months it grew to 850. My original M-Spike was 3.8. Over 10 months it grew from 0 to 0.8.
I knew I relapsed and had to fight with my doctor for over a month to provide me his analyst. Remember, he was supposed to be monitoring these tests for the past 10 months. After I showed him my analyst, he said he made a mistake.
His answer was another bone marrow biopsy. I laughed. The biopsy revealed that the plasma percentage doubled over the original diagnosis.
So to answer your original question on testing? Learn what these tests are, how to analyze and diagnose them and demand your doctor orders them at the correct times.

May 3
A MyMyelomaTeam Member

Really helpful response. You put many puzzle pieces in the right place for me. Thank you.

May 3
A MyMyelomaTeam Member

@A MyMyelomaTeam Member Yes, I take 4 mg of Ninlaro once a week for three weeks, then a week off. I take 20 mg of Dexamethasone with my Ninlaro. I also take 20 mg of Revlimid daily for three weeks, then a week off. Since my MM is medium aggressive with a 11;14 genetic abnormality, I’ll most likely stay on this regimen, till I either pass away or relapse.

May 2 (edited)
A MyMyelomaTeam Member

Just to clarify, are you taking any cancer drugs at this time?

May 2

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