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Sharing My Journey: 4 Years Beyond My Prognosis
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Hi, I am Shirley. I live in Australia. I was diagnosed with AML in October, 2021. Like many, my symptoms were not that obvious. I was getting short of breath but that was about it. I was told I had only a short life expectancy. A BMT was not available for me. I was put on a 5 week intensive of chemo during the COVID lockdowns. No one could visit me in the hospital, including my husband. That was a bit of a tough time, but I was innundated with love from many through messages and calls. I went into remission but then 18 months later I relapsed with some extra mutations. One new mutation was TP53. I was now told I could expect about 6 months more life. I was put onto cycles of azacitidine and venetoclax. I did 14 cycles until I could no longer bear to continue these. I have lived way past the expected time, now coming up for almosts 4 years since diagnoses and I am still in remission for AML! I attribute this to prayer. However, I unusually developed MDS late last year. This usually comes before AML, but now I am battling cycles of blood tranfusions and again struggling to breath. I'm still here though! I wrote a book during these past 3 plus years called Living on the Edge of Eternity. Some of you may find it encouraging.
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