Just to share what I think is for MM Team

I’m only a patient living with myeloma, not a medical professional. I like to read and learn about my condition, and I’m sharing what I’ve found — but everyone should confirm with their doctor “

“Just sharing as a patient — not a doctor. Please talk to your doctor before making any medical decisions.”

When I first heard about MRD testing, I was both curious and a little nervous. My doctor mentioned ClonoSEQ, a very sensitive test that can detect even a single myeloma cell among a million normal ones.

I asked, “If the test shows I’m MRD-negative, do I still need maintenance medication?”

The answer wasn’t simple.

For some people, being MRD-negative is an excellent sign — it usually means longer remission and that the body is responding very well to treatment. Some doctors may consider pausing or even stopping maintenance therapy if MRD stays negative for a long time.

But here’s the important part: it depends on your risk level.
• If you are standard risk, some doctors may safely reduce therapy.
• If you are high risk, like with del17p or t(4;14), they usually recommend continuing maintenance because the chance of relapse is higher, even if MRD is negative.

ClonoSEQ is amazing because it gives very detailed information. But it’s not magic — myeloma is unpredictable. Staying off maintenance is possible for some, but only under close monitoring, frequent lab checks, and repeated MRD tests.

The lesson here is patience and partnership: your doctor and you make the decision together, balancing the risks, the benefits, and your quality of life.

MRD negativity is a gift — a sign that your treatment worked — but wisdom and caution guide how you use that gift.

“I ever asked my doctor can I stop this medication and he smiled at me Yes you can but within few months you will seeing me again “🤦🙏

Since my MM is fairly aggressive, I get a bone marrow biopsy for Clonoseq testing every 6 months. I’ve had 18 Bone marrow biopsies in the last 8 years. I’m at MRD, but since my MM is aggressive, I’m in continuous treatment, with Kyprolis infusions every other week, daily Revlimid for 3 weeks, with one week off. Dexamethasone with the Kyprolis, and a host of other supplemental medications.

@A MyMyelomaTeam Member

🙏Disclaimer: I’m not a doctor, just a patient sharing what I’ve learned. Always check with your doctor.

Some people with myeloma who are MRD-negative by ClonoSEQ may eventually pause or stop maintenance, especially if they are standard-risk. High-risk patients usually continue therapy because relapse is still possible. MRD negativity is a very good sign, but regular monitoring and doctor guidance are essential.

Just sharing
I was diagnosed with high-risk Multiple Myeloma — IgG Lambda, with t(4;14), 1p deletion, and TP53 loss. My doctors told me this type is aggressive. Now I’m on maintenance therapy, living with fewer side effects and less pain than expected, and learning to celebrate every small victory along the way.

🙏🌿
Moh

Mentioned Users

A MyMyelo...

Joy,
Yes, some people are off all treatment once they are MRD negative. They give the rest of us hope.
Paula🌹

My doctor told me the same things Moh's did. I asked Dr. Nooka if he ever took patients off maintenance. He said he takes patients off all the time, but I won't be able to stop due to my high risk genetics. Plus, I have yet to reach Mrd negativity, but I'm doing well anyway.