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A MyMyelomaTeam Member asked a question 💭
Manchester, ME
4 days ago
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A MyMyelomaTeam Member

My haematologist says there are differing levels of risk even in the high risk category (mainly in regard to the genetic changes referred to above).
For example I have a translocation of chromosomes 14 and 16 (meaning 2 of my chromosomes swapped a bit of themselves with the other) also known as t(14:16), and I also have an addition of 1q (meaning that chromosome has grown longer (also known as 1q+). These two factors technically make my myeloma high risk.
However there are other genetic changes that are considered higher risk: t(4:14) with 1q+ or 1q-, or deletion of 17 ( a part missing from chromosome 17)
These factors can be found in FISH test results.

Then there’s the 2/20/20 criteria that doctors look for. Meaning they have found that patients whose results show the following to be at higher risk of progression:
*M-protein level: Higher than 2.0 grams per deciliter (g/dL) in the blood.
*Bone marrow plasma cells: More than 20% abnormal plasma cells in the bone marrow.
*Free light chain ratio: An abnormal ratio greater than 20

As it stands I believe the 2/20/20 is considered a higher significance than the genetic mutation that I have. My doctor said not to be concerned because I don’t have deletion of 17 which is “the bad one”.

Hope this makes sense and doesn’t scare anyone.

4 days ago
MyMyelomaTeam

High-risk smoldering myeloma (SMM) is a precancerous stage between MGUS and active multiple myeloma. It's called "high-risk" when certain factors suggest a greater chance of progressing to active myeloma.

Factors that can make SMM high-risk include:

- Plasma cells with specific gene changes
- High numbers of plasma cells Show Full Answer

High-risk smoldering myeloma (SMM) is a precancerous stage between MGUS and active multiple myeloma. It's called "high-risk" when certain factors suggest a greater chance of progressing to active myeloma.

Factors that can make SMM high-risk include:

- Plasma cells with specific gene changes
- High numbers of plasma cells in the bone marrow
- High or rising levels of M protein in the blood
- M protein made from IgA heavy chain (rather than IgG)
- Bone lesions visible on imaging The progression risk from SMM to active myeloma is highest in the early years after diagnosis:

- Years 1–5: About 10% chance per year of developing active myeloma
- Years 5–10: Drops to around 3% per year
- After 10 years: Falls to roughly 1% per year

For high-risk SMM specifically, early treatment is now generally recommended rather than simply watching and waiting. Regular follow-up visits and testing are important to catch any changes early.

It's always worth having an open conversation with your care team about your specific risk factors and whether treatment makes sense for your situation.

4 days ago

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