Who Else Has Kappa Light Chain Myeloma? What Year Were You Diagnosed? I Keep Reading This Is An Aggressive MM Version With Poor Prognosis. | MyMyelomaTeam

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Who Else Has Kappa Light Chain Myeloma? What Year Were You Diagnosed? I Keep Reading This Is An Aggressive MM Version With Poor Prognosis.
A MyMyelomaTeam Member asked a question 💭

Is that true?

posted December 25, 2023
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A MyMyelomaTeam Member

I have IgG Kappa Light Chain with 3 high risk characteristics. When diagnosed last March, I was stage III and my kidneys were rapidly failing. I was terrified reading my pathology report that said poor prognosis more than once on it. I wanted to know what that meant, but I read wildly differing things. Life expectancy for myeloma patients keeps changing. What is true today may not be tomorrow because so many new treatments are being developed. Its also very confusing trying to find info on what your life expectancy is because you are unique. So much depends on your exact myeloma characteristics. Your health overall. The treatment choices that are made. (Just being under the care of a myeloma specialist statistically doubles your life expectancy). How you handle things emotionally. Are you positive or depressed? The support system you have. I had 4 rounds of RVD starting in April. Finished 4th round early July with clear bone marrow biopsy. Had SCT Aug 31. Just had my 100 day post transplant testing. I am MRD Negative. The best possible response. My doctor reassured me even when it starts coming back, tests will catch it and we will control it. I started on Revlimid as maintenance. It has given me more hope that I do still have some life ahead in spite of those terrifying words "poor prognosis". Hang in there and live in the present. Work out what you need to get the best rest, and feel the most at peace on a daily basis

posted December 28, 2023
A MyMyelomaTeam Member

I have IgG Kappa Light Chain Myeloma, was diagnosed in March 2023 with Bone Marrow Biopsy. It was only 50% in March. Had repeat biopsy in August and it was already 80%.....so started Rvd treatment October. Just finishing 3rd cycle. Will start 4th cycle Jan 3 and then will be having SCT February. Treatments now are giving much better prognosis than prior to anything I had found on internet to read.
You will find a wealth of information here in this group to help you from those actually under treatment and/or in remission.
.

posted December 27, 2023
A MyMyelomaTeam Member

My doctor told me I have IgG Kappa Light Chain. Very aggressive. So we’re going to do 2 ASCT’s. When you say prognosis you mean chances of survival after 10 years? 84% with proper treatment now.

posted December 25, 2023
A MyMyelomaTeam Member

Mine was 1584 Dec 2022 now 41 Prayers for all

posted December 29, 2023
A MyMyelomaTeam Member

What was your kappa light chain when it was dx’d? Mine was 124

posted December 29, 2023

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