Smoldering Multiple Myeloma and symptoms

Hi. SMM is very serious and it's great your doctor is being proactive. It's great and good advice to stay positive and live your best life every day! Thank you for the reminder.

You may also be interested in these discussions related to Smoldering Multiple Myeloma:
https://connect.mayoclinic.org/group/blood-cancers-disorders/?search=smoldering&index=discussions

Thank you for sharing this, Brian. I have not heard anything about new tracers they are using to capture any emerging neoplasms that are in the marrow or bone tissue. I will certainly look into it. Knowledge is so important when dealing with something that is hidden from view!

Stay strong. The good news is that we are living and breathing today so we might as well enjoy every experience, relationship and moment that we can.

Dr Sabine Mai, UM Canada Research Chair in genomic instability and nuclear architecture in cancer, published co-authored findings in the American Journal of Hematology.

The groundbreaking study showed that a method developed by Mai and her team can accurately predict the risk that a patient with “smoldering” multiple myeloma will progress to having multiple myeloma.

Thank you this is helpful. I am bringing this to my appointments this week. And Easy M. A blood test for a much more detailed data set of the individual peptide transformations for the M-spike. They are offering a free lab test and need to collect before treatment and at least a 0.5 mspike. Just learned about them at a support group meeting here in Rhode Island last week. EasyM Clonotypic Peptide Mass Spectrometry (LC-MS/MS) They are in Canada as well.

I just put this into ChatGPT and this is what i found:
There’s a lot of exciting movement in tracer development for detecting bone marrow and bone tissue neoplasms. Here’s a breakdown of the most promising approaches:

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🎯 Non-FDG PET Tracers
• Choline PET and Methionine PET target membrane and protein synthesis pathways. Early studies suggest they detect more lesions than FDG, though still in research stages .
• Immuno-PET uses radiolabeled antibodies (e.g., daratumumab‑based agents like ⁸⁹Zr‑DFO‑daratumumab). In a first-in-human phase I, this tracer highlighted known myeloma lesions—and newly discovered ones—in a 6-patient trial .

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🧠 Sabine Mai’s Telomere/Nuclear Architecture Profiling
• Dr. Mai and her team at the University of Manitoba developed a 3D telomere profiling assay (“TeloView”) that assesses genomic instability in smoldering multiple myeloma.
• Based on their study of 168 SMM patients, this telomere-based method can stratify individuals by progression risk to active multiple myeloma, enabling more personalized monitoring and early interventions .
• The method was recently published in the American Journal of Hematology, with broad clinical validation from over 3,000 patients across 30+ studies via Telo Genomics .

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💡 Other Imaging & AI Advances
• Advanced AI and radiomic models applied to CT and MRI are being used to predict focal bone lesion development and minimal residual disease (MRD), offering non‑tracer-based early detection angles .
• Hybrid modalities like PET/MRI and low‑dose PET/CT are also being optimized for staging and prognostic risk assessment in smoldering cases .

My husband was recently diagnosed with Multiple Myeloma with Kidney Failure. Now waiting to see referring DRs for treatment plan. Journaling is a great idea!

Started MM journey in Jan '25- just finished weekly chemo and now on to monthly... next step is possible Bone Marrow Transplant lots to learn about the procedure!

Prayers for your husband- one day at a time.

Please look into Low Dose Naltrexone and read up on it. I had that kind of pain and it helped with no side effects-in 2 days. It is also good for the immune system. You will need to find a doc to write the script, as it is compounded. Insurance won't pay for it but it is pretty inexpensive. I take 2 mg a day. It cannot be used with opiates. It negates them.

@treehouse5437
How long did you do treatment