Please Speak Up, What And Who Is Or Has The Longest Remission/ Survival From MM? | MyMyelomaTeam

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Please Speak Up, What And Who Is Or Has The Longest Remission/ Survival From MM?
A MyMyelomaTeam Member asked a question πŸ’­
posted May 24, 2023
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A MyMyelomaTeam Member

Hubby was diagnosed 1/2003 but we are certain he had MM for at least 5 years prior due to the damage that had been done to his left pelvic bone. Tandem STC in 2004 and NO medications other than lisinopril until 2017. 7/2017 another STC transplant followed by Revlimid & Dex for maintenance. 2019-2022 Faspro, Selinexor, Blenrep, Pomalyst/Dex. 1/2023 - VD-PACE; 3/2023 - Teclistamab; 4/2023 - VD-PACE.

But he was on the brink of death between 4/20-5/12 with Sepsis, pneumonia and streptococcus in his bloodstream. Severe pancytopenia - no RBC, WBC or platelets… It was an awful time. Many tests and a BMB. WBC, RBC and platelets started to come back after 2 packed RB transfusions, 4 platelet transfusions and one IVIG infusion. And MANY prayers.

Then on 5/16 - we got the results of the BMB β€” no malignancyβ€” we heard the word REMISSION for the first time since 2004! He was discharged from the hospital 5/16 and is getting stronger daily. Taking potassium, his vitamins, Famvir and metoprolol. Bloodwork every week as his counts are still recovering. WBC is now normal; platelets coming up, RBC coming up.

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posted May 26, 2023 (edited)
A MyMyelomaTeam Member

Hello! I have been off of treatments since April of 2022. In May of 2022, May 9th, my stem cells were withdrawn and sent to a lab where they changed them into cancer eating cells and made them more fertile. On September 27th I was told I was in complete remission and cancer free!!! Woo-Hoo, Praise GOD!
No treatments since April of 2022. I go for a check up in June to continue the streak and be free, still!
AMEN!!! JESUS our healer!

posted May 24, 2023
A MyMyelomaTeam Member

My daughter met a woman who told her that she had MM and was cancer free for 20 years. She said that she has been traveling and enjoying life. I pray to be that person and that we all live our lives to the fullest.

posted May 24, 2023
A MyMyelomaTeam Member

This weekend I went flew home in California to be best man in a wedding. It was great but the strange thing was the Bridesmaid in the wedding and I were talking and she has been battling MM For 16 years with just a few setbacks but quick turnarounds. Small world to a big problem but promising. Hearing 16 years gave me even more hope to long life.

posted January 24
A MyMyelomaTeam Member

❗❗❗ To recap (and inspire!) ❗❗❗

31 years James Bond (diagnosed 1992)
29 years David Emerson (diagnosed 1994)
25 years NancyEpsy (diagnosed 1998)
25 years HalAnderson (diagnosed 1998)
21 years MarciaHolman (diagnosed 2001 – passed 2022)
20 years JoanEs (diagnosed 2003)
15 years PedroFlores (diagnosed 2008)

posted May 26, 2023

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