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Smoldering Multiple Myeloma and symptoms

Posted by maddogstormy @maddogstormy, May 21, 2025

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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righty01 | @righty01 | Aug 6 6:08am
In reply to @mascot "@righty01 Hi, I am high intermediate with 4/14 translocation and 13qdel. K/l is 0,025 and at..." + (show)
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@righty01
Hi,
I am high intermediate with 4/14 translocation and 13qdel.
K/l is 0,025 and at 0,1 they will start treatment. How high were your lambda and your kappa respectively?
Thanks and all the best
Mascot

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@mascot
My lambda flc was 480.1 mg/L and kappa flc is 18.1 mg/L. So .0377

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hlwd7 | @hlwd7 | Aug 6 11:50am
In reply to @mascot "@hlwd7 Hi, May I ask what tippen the Saale for You being high Risk? I am..." + (show)
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@hlwd7
Hi, May I ask what tippen the Saale for You being high Risk?
I am higher intermediate until now and getting worried

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@mascot
My Kappa Light Chin was 51.1 a year ago and is now in normal range 7.7. Lambs Light Chains are holding steady between 2.7-3.2.Kappa / Lamda Ratio was 12.17 a year ago and now 2.85. I think these are the numbers that would help you. I started Darzalex FasPro in late march 2026. I’ve been fortunate to have had no side effects. I go to monthly injections in September. Hope this helps.

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mascot | @mascot | Aug 7 2:07am
In reply to @hlwd7 "@mascot My Kappa Light Chin was 51.1 a year ago and is now in normal range..." + (show)
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@mascot
My Kappa Light Chin was 51.1 a year ago and is now in normal range 7.7. Lambs Light Chains are holding steady between 2.7-3.2.Kappa / Lamda Ratio was 12.17 a year ago and now 2.85. I think these are the numbers that would help you. I started Darzalex FasPro in late march 2026. I’ve been fortunate to have had no side effects. I go to monthly injections in September. Hope this helps.

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@hlwd7
Thanks. Here they are cautious of starting although my lambda Numbers are high.
Is this the Majestc trial?
I will Look it up

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hlwd7 | @hlwd7 | Aug 7 5:44am
In reply to @mascot "@hlwd7 Thanks. Here they are cautious of starting although my lambda Numbers are high. Is this..." + (show)
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@hlwd7
Thanks. Here they are cautious of starting although my lambda Numbers are high.
Is this the Majestc trial?
I will Look it up

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@mascot
I understood the MajesTEC trial are for those with relapsed Multiple Myeloma. I have been diagnosed with Smoldering Myeloma. I am not participating in any trials. Darzalex FasPro was approved for SM-M in November 2025 to curtail developing MM. Hope this helps.

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amberl99 | @amberl99 | Aug 7 11:58am
In reply to @kayabbott "Another option for high risk SMM is bi- or tri-specific antibodies; fewer side effects than Darzalex..." + (show)
Profile picture for kayabbott @kayabbott

Another option for high risk SMM is bi- or tri-specific antibodies; fewer side effects than Darzalex Faspro and clinical trials last a few months rather than the longer time of Faspro. I tried to get on a clinical trial for bispecific antibodies for my IgA Kappa high risk SMM, but my eGFR was too low (they wanted 60 and greater kidney function). I don't see any benefit for Darzalex Faspro over I-VRD treatment, but then I am likely close to MM with kappa of 1,300, kappa/lambda of 94, M spike 1.5, and my BMB two years ago was 15% when my numbers were a lot lower (I get a new BMB on Monday). Clinical trials can be found online thru ClinicalTrials.gov.

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@kayabbott
Please keep us posted on your bmb results if that’s okay. I’ve been following your comments for a year since I was diagnosed with SMM. All the best to you!

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