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DennisB

17d

Just to introduce myself. I was diagnosed in 2010, Trisomy 12 unmutated. I was in watch and wait until 2019. Started having significant infections with a steeply declining hemoglobin count. WBC was 287,000 and hemoglobin was below 9 when I entered a clinical trial in 2020 combining Bendamustine (Light 3 cycles to reduce tumor load), rituximab and venetoclax. After 2nd round of Bendamustine, I developed Steven Johnson Syndrome and was hospitalized for 6 days. Fortunately, it wasn't too severe and I recovered pretty quickly. After several months of treatment (rituximab and venetoclax), I became neutopenic, then developed pneumonia with another hospital stay. I am now out of treatment, achieved MRD negative on early 2022, and am currently still in remission. Feeling good, and very happy that there are now multiple treatment options. I now fully expect to live a long l, healthy and happy life. Thankful for all my friends, family and those that provided support during treatment.

Top reply
    • 3rivers

      17d

      Trisomy 12 & unmutated, I was in a study in Nov 2015 to Mar 2016 of Bendamustine & Gazyva. No cll found in June bone marrow biopsy & MRI. Onc said I should achieve 5-7 years before needing treatment again. Currently in year 8. I told him I was shooting for 10 years and then we’ll discuss 😂

    • 3rivers

      17d

      Trisomy 12 & unmutated, I was in a study in Nov 2015 to Mar 2016 of Bendamustine & Gazyva. No cll found in June bone marrow biopsy & MRI. Onc said I should achieve 5-7 years before needing treatment again. Currently in year 8. I told him I was shooting for 10 years and then we’ll discuss 😂

    • Hibiscus52

      17d

      I’m Trisomy 12 unmutated as well and am on my 2nd treatment . First treatment gave me a year and hopefully Acalabrutinib, 2nd year now, provided a fairly long term outcome.

    • Binks1969

      17d

      So happy for you!

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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