I have smoldering Myeloma. Does anyone have this diagnosis?

Posted by Debbie @debbie1, Jul 10, 2011

Multiple Myeloma- I have smoldering Myeloma. Does anyone have this diagnosis?
Does anyone have an abnormal protein in their blood , which is a precursor to Multiple Myeloma. My Oncologist has said this could go on for years, or could or suddenly change

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Best of luck in getting your condition diagnosed. No oncologists or hematologist./oncologist experienced with MM in Vegas? Have you checked with the University of Nevada Las Vegas health system?

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@2012can

You mention you started treatment for smoldering myeloma in 2016. Can you share your treatment ?

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@2012can When I started in 2016, it was Velcade, Revlamid, and Dexmethasone. Over the years there were changes that involved dosage adjustments. We all are different and there is no "one size fits all". I hope you are finding confidence in your care team and participating in decisions with them. Peace, Nancy

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Is SMM considered stage 1 MM?
Has anyone’s doctor tell them SMM is cancer

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Does anyone have SMM

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@treinbold

Is SMM considered stage 1 MM?
Has anyone’s doctor tell them SMM is cancer

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@treinbold Welcome to Mayo Clinic Connect!

I am attaching several articles here that speak to your concern. While smoldering multiple myeloma can advance into multiple myeloma, it is not generally considered a cancer.

From MD Anderson: https://www.mdanderson.org/cancerwise/6-facts-about-smoldering-myeloma.h00-159538956.html
From Memorial Sloan Kettering Cancer Center: https://www.mskcc.org/cancer-care/types/multiple-myeloma/other-plasma-cell-diseases/smoldering-multiple-myeloma
And from the Cleveland Clinic: https://my.clevelandclinic.org/health/diseases/23911-smoldering-multiple-myeloma#:~:text=What%20is%20smoldering%20multiple%20myeloma,system%20mutate%20into%20abnormal%20cells.

Have you been diagnosed with smoldering multiple myeloma? Many of us are diagnosed first with MGUS during a routine labwork for another condition. If so, what is your medical team advising you at this time?
Ginger

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@gingerw

@treinbold Welcome to Mayo Clinic Connect!

I am attaching several articles here that speak to your concern. While smoldering multiple myeloma can advance into multiple myeloma, it is not generally considered a cancer.

From MD Anderson: https://www.mdanderson.org/cancerwise/6-facts-about-smoldering-myeloma.h00-159538956.html
From Memorial Sloan Kettering Cancer Center: https://www.mskcc.org/cancer-care/types/multiple-myeloma/other-plasma-cell-diseases/smoldering-multiple-myeloma
And from the Cleveland Clinic: https://my.clevelandclinic.org/health/diseases/23911-smoldering-multiple-myeloma#:~:text=What%20is%20smoldering%20multiple%20myeloma,system%20mutate%20into%20abnormal%20cells.

Have you been diagnosed with smoldering multiple myeloma? Many of us are diagnosed first with MGUS during a routine labwork for another condition. If so, what is your medical team advising you at this time?
Ginger

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Yes, I was diagnosed with SMM in February, my oncologist is doing the wait and watch method for now, It is a little confusing to me, why can’t doctors treat it now instead of waiting until it turns into active MM?

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@gingerw

@treinbold Welcome to Mayo Clinic Connect!

I am attaching several articles here that speak to your concern. While smoldering multiple myeloma can advance into multiple myeloma, it is not generally considered a cancer.

From MD Anderson: https://www.mdanderson.org/cancerwise/6-facts-about-smoldering-myeloma.h00-159538956.html
From Memorial Sloan Kettering Cancer Center: https://www.mskcc.org/cancer-care/types/multiple-myeloma/other-plasma-cell-diseases/smoldering-multiple-myeloma
And from the Cleveland Clinic: https://my.clevelandclinic.org/health/diseases/23911-smoldering-multiple-myeloma#:~:text=What%20is%20smoldering%20multiple%20myeloma,system%20mutate%20into%20abnormal%20cells.

Have you been diagnosed with smoldering multiple myeloma? Many of us are diagnosed first with MGUS during a routine labwork for another condition. If so, what is your medical team advising you at this time?
Ginger

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My Dr, diagnosed me with Smoldering IGG kappa multiple myeloma

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@treinbold

Does anyone have SMM

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Yes, seems quite a few of us do. Can you search this group for “smoldering”?

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@treinbold

Yes, I was diagnosed with SMM in February, my oncologist is doing the wait and watch method for now, It is a little confusing to me, why can’t doctors treat it now instead of waiting until it turns into active MM?

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My understanding is that it isn’t appropriate to treat a condition that only should be watched. My understanding is that the majority of mugus patients do not progress. And as a doc said to me one time “watchful waiting IS treatment”.

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@treinbold

Does anyone have SMM

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How often should you get MRi and /or bone marrow biopsies when you have Smoldering multiple myeloma?

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