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Smoldering Multiple Myeloma and symptoms

Posted by maddogstormy @maddogstormy, May 21 5:48am

I have had MGUS since 2021 and now have smoldering multiple myeloma. I am now feeling something new. A symptom. Like a twinging or dull aching pretty much everywhere. I am wondering if this is a bone symptom and if there any descriptions of bone pain. I have my next follow up in a week and I am concerned that I will be told I am active and have elevated to multiple myeloma.
Thanks.
Brian

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mattymatilda | @mattymatilda | May 28 4:38am
In reply to @donna195 "I just was diagnosed with SMM on Wednesday after my BMB showing 20-30% plasma cells neoplasms,..." + (show)
@donna195

I just was diagnosed with SMM on Wednesday after my BMB showing 20-30% plasma cells neoplasms, kappa lambda ratio < .1 and an abnormal number of plasma cells for my age of 60. I was originally diagnosed in June 2023 with MGUS after having a DVT and discovering i have genetic leiden factor V. In January 2025 me abnormal protein band 1 and my IgG Lambda had increased 25% in 12 months. My hematologist oncologist is being proactive and i am now scheduled for a full body CT PET scan August 1.

I have numbness in my right thumb and two fingers and sore low back and left outer hip 24/7. I have heard promising results from others who have undergone treatment. Until they tell me I have something to worry about, I am going to keep my journal and live every day to the fullest!

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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.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 2 8:56pm

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

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donna195 | @donna195 | 5 days ago
In reply to @maddogstormy "Hi Donna Thank you for sharing this part of your story. I am also having a..." + (show)
@maddogstormy

Hi Donna
Thank you for sharing this part of your story. I am also having a follow up PET scan in August. My full body bone marrow scan in April was negative thankfully. I was wondering if you have heard anything about new tracers they are using to capture any emerging neoplasms that are in the marrow or bone tissue. The research seems to be changing radically monthly. I am feeling more prepared for my upcoming quarterly appointment and labs. I do appreciate your thought about valuing every moment to the fullest. Thanks. Brian

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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.

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sallik74 | @sallik74 | 4 days ago

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.

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2 replies
maddogstormy | @maddogstormy | 4 days ago
In reply to @sallik74 "Dr Sabine Mai, UM Canada Research Chair in genomic instability and nuclear architecture in cancer, published..." + (show)
@sallik74

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.

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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.

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donna195 | @donna195 | 3 days ago
In reply to @sallik74 "Dr Sabine Mai, UM Canada Research Chair in genomic instability and nuclear architecture in cancer, published..." + (show)
@sallik74

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.

Jump to this post

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:

⸻

🎯 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 .

⸻

🧠 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 .

⸻

💡 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 .

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