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

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

I am confused about my bone marrow biopsy, can someone please explain this to me? It says abnormal plasma cells present, plasma cells show cytoplasmic kappa light chains restriction and shows CD19 neg, CD38bri, CD45 neg, CD 56 neg, CD138 mod, cKappa mod and CD34 positive

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@cheft

Thank you! I couldn’t figure out how to search for it.

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Hi @cheft, you’re welcome. You can find your own comments or any members comments by clicking on the avitar (picture). It will bring up the bio page and underneath that it will say, View Profile.
Once that opens, under the photo you’ll see a little menu that says:
Discussions
Comments
Reactions.
Click on comments and scroll back chronologically. It can take a while if the comment is back in time.
Hopefully that helps you out.
Again, thank you for your great and helpful comments to fellow members with SMM…and beyond. ☺️

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@cheft

Thank you! I couldn’t figure out how to search for it.

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Thank you, 😊

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@loribmt

Hi @trienbold, I found the posting @cheft had written regarding the five risk factors for smoldering multiple myeloma he was given by his doctor. You can find it here: https://connect.mayoclinic.org/comment/883113/

I hope this is helpful for you. I know it can be frustrating with a watch & wait situation; feels like you’re waiting for the other shoe to drop. After reading @cheft’s comments, have you recognized and similarities?

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Thank you! I couldn’t figure out how to search for it.

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@treinbold

What Did Dr. Dingle say we’re the 5 risk factors?

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Hi @trienbold, I found the posting @cheft had written regarding the five risk factors for smoldering multiple myeloma he was given by his doctor. You can find it here: https://connect.mayoclinic.org/comment/883113/

I hope this is helpful for you. I know it can be frustrating with a watch & wait situation; feels like you’re waiting for the other shoe to drop. After reading @cheft’s comments, have you recognized and similarities?

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@cheft

I would encourage more discussions around what exactly the doctors are looking at that pushed them to make the “smoldering “ diagnosis.

The reason I say this is because I too was moved to that and ended up going to the Mayo for a second opinion. The term “smoldering” actually came from the Mayo.

After reviewing my slides from two different marrow biopsies, new labs, urinalysis etc. Dr. Dingle walked me through what all of that revealed explained many oncologists and hematologist only look at one factor when diagnosing SM, and that is simply if the effected marrow is at or over 10%. There are several other factors that should be considered and he stated there is currently much debate about the term Smoldering and he wished they not use it.

After he walked through me not having 4 of the 5 risk factors he said I do not have “smoldering” I have MGUS with a 1% chance of progressing a year. Now, who knows if that will remain true and that doesn’t mean that is what everyone will hear but I’m just saying a second opinion is worth it to me, good or bad. At least it’s more info.

Just my two cents.

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I’m sorry. Swapped with work. I made a post on here before and listed the factors. I’ll look for my notes and send when I can.

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@treinbold

The doctors did a bone marrow biopsy and aspiration that showed 16%, IGG 2267, M-Spike 2.04, I have to have my blood checked every 2-3 months,

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There is a threshold at which they may decide to start treatment even with smoldering multiple myeloma. I’m glad that they’re having your blood drawn every 2 to 3 months in case results should trip that treatment trigger.

The research and treatment options are quite promising for the whole multiple myeloma continuum.

In this respect, we are lucky.
Patty

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@cheft

I would encourage more discussions around what exactly the doctors are looking at that pushed them to make the “smoldering “ diagnosis.

The reason I say this is because I too was moved to that and ended up going to the Mayo for a second opinion. The term “smoldering” actually came from the Mayo.

After reviewing my slides from two different marrow biopsies, new labs, urinalysis etc. Dr. Dingle walked me through what all of that revealed explained many oncologists and hematologist only look at one factor when diagnosing SM, and that is simply if the effected marrow is at or over 10%. There are several other factors that should be considered and he stated there is currently much debate about the term Smoldering and he wished they not use it.

After he walked through me not having 4 of the 5 risk factors he said I do not have “smoldering” I have MGUS with a 1% chance of progressing a year. Now, who knows if that will remain true and that doesn’t mean that is what everyone will hear but I’m just saying a second opinion is worth it to me, good or bad. At least it’s more info.

Just my two cents.

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What Did Dr. Dingle say we’re the 5 risk factors?

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The doctors did a bone marrow biopsy and aspiration that showed 16%, IGG 2267, M-Spike 2.04, I have to have my blood checked every 2-3 months,

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I would encourage more discussions around what exactly the doctors are looking at that pushed them to make the “smoldering “ diagnosis.

The reason I say this is because I too was moved to that and ended up going to the Mayo for a second opinion. The term “smoldering” actually came from the Mayo.

After reviewing my slides from two different marrow biopsies, new labs, urinalysis etc. Dr. Dingle walked me through what all of that revealed explained many oncologists and hematologist only look at one factor when diagnosing SM, and that is simply if the effected marrow is at or over 10%. There are several other factors that should be considered and he stated there is currently much debate about the term Smoldering and he wished they not use it.

After he walked through me not having 4 of the 5 risk factors he said I do not have “smoldering” I have MGUS with a 1% chance of progressing a year. Now, who knows if that will remain true and that doesn’t mean that is what everyone will hear but I’m just saying a second opinion is worth it to me, good or bad. At least it’s more info.

Just my two cents.

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