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Diagnosed With Ultra High Risk MM From Smoldering High Risk. Not Much Info On This But It Is Increasing. Any Guide To Info Is Appreciated.

A MyMyelomaTeam Member asked a question 💭
Naples, FL
July 4
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A MyMyelomaTeam Member

Steve:Keeping fingers crossed you are STABLE since being diagnosed that is my new favorite word. 😍 Let us know how it turns out Fingers Crossed for you Dee

July 6
A MyMyelomaTeam Member

Steveonmfl: The way I see it everyday I am above ground.There Is Hope😁

July 6
A MyMyelomaTeam Member

I have del(13q); 1q Amplification; del 1p; I have High Grade Bone Marrow Fibrosis-First it was.thought that I had Primary Myelofibrosis. I also have Aberrant CD Markers. Initially I was.Told I would get Symptomatic Myeloma within 1 year and would require Treatment ie Stem Cell Transplant. Knock On Wood. No treatment as of today. It's been 6 years since my Diagnosis. Hope My Luck Continues. Have A wonderful weekend. Dee

July 5
A MyMyelomaTeam Member

Stevon,
What does your FISH report say? Some people only have high IgA and others like me have added high risk cytogenetics like t(14;16) with 16q deletion, Monosomy 13, and +5.
What are yours’?

July 4
A MyMyelomaTeam Member

Vince when I was first diagnosed with IgA Kappa SM my Kappa Light Chains were 28mg/L and My Lambda was 8mg/L making.my K/L Ratio 3.5mg/L. Today, my Kappa is.54.2mg/L and my Lambda is 11mg/L which makes my K/L Ratio is 4.92mg/L. MY IgA is very high at 2039 my IgG is 987 and my IgM is 27. MY "M" Spike is currently 1.4 and was.1
when first diagnosed with Smoldering in 2018. I DO NOT HAVE C.R.A.B. at the moment and No Myeloma Defining event as far.as.the K/L Ratio which is below 100mg/L Even though my Blood Levels are Not the greatest, my Oncologist says I am still Stable-Currently no treatment. However, my next blood test is Aug 15th along with a.24-Hour Urine-Which I do twice a year. Sometimes I have Bence Jones.Protein and sometimes I don't. Since my.Kidney function is normal I don't worry too much about that.For Now We.shall have to see.what.the future holds. Anytime you would like to.chat
PLEASE FEEL FREE TO REACH OUT. DEE

July 4

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