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violetPuffin
Acute Myeloid Leukemia Discussion • August 4, 2025
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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Shodgesibmgmailcom
Acute Myeloid Leukemia Discussion • July 30, 2025
My Story: Managing cGVHD and Secondary Cancers
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Hi everyone. I was diagnosed in June 2022, along with my first bout of skin cancer, which required rebuilding my nose after taking it down to the underlying cartilage. After 7+3, FLAG, two rounds of Aza/Ven and consolidations, I finally got my bone marrow transplant in February 2023. I have adverse mutations, but have already outlived the probabilities. I have severe cGVHD of the gut, but Rezurock is taking care of it. I've had additional skin cancers, and just about to start treatment for an aggressive Gleason 8 case of prostate cancer. So my medical story is mostly about dealing with cGVHD and secondary malignancies. But I'm happy to be here, very engaged in volunteer work, with family and with great friends. My wife Pat is the most amazing person of all to put up with all of this over time and to love me despite sharing this unanticipated journey. Where the path leads, we must follow. And now yet another new twist. I'm very lucky to have an incredible medical team at Duke Health who talk to each other, and to be blessed by resiliency. I love being a coach for HealthTree who have figured prominently not only in the work that we do, but significantly with some of the people that I've coached. I love playing piano for blood cancer patients at the hospital and for hospice. Kudos to everyone who deals in any way with this remarkable AML journey. We are fellow Travelers.
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TnWarrior
Acute Myeloid Leukemia Discussion • July 30, 2025
Sharing My Story of Hope and Taking Control
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Hello everyone my name is Debbie and I was diagnosed with AML November 23 of 2023 when I went in for was shortness of breath, thinking it had to do with my Parkinson’s disease and they tested me and informed me I had leukemia. Which was a big shock because I just battled breast cancer November 17 of 2017 and thought I was cancer free and I never have to deal with that ever again, but I was wrong. I was told I had six months to live. If I did not do a stem cell transplant and I wasn’t ready to let go. I have a wife. I’m very happy to be with so I said let’s do it even though I said I would never do chemo again, but my biggest accomplishment that I feel like I had control was when it came time that my hair was falling out, and I asked the people at city of Hope in Duarte, where I was staying to have the barber to come up and shave my my head. Because I was in control I was not gonna let cancer control every part of my life. This I had control of and it was very empowering to be able to make that decision and do myself as you can see I’m talking to you today so you know chemo works stem cell transplant workjust do what your oncologist says and the most important thing is to keep a smile on your face and keep positive and keep positive people around you so just so you know I’m here if you need to talk. Sincerely, Debbie best known as TNWARRIOR
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puceSpider
Acute Myeloid Leukemia Discussion • July 16, 2025
Skin Changes and Sensations During Relapse?
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I am multiple myeloma patient Iga and Lambda light chains in the process of relapse. I have recently started having some skin changes which are not bug bites. These are popping up on different parts of my body and most of them are red and itchy. I also have strange sensations on my skin like something is moving on it but no apparent insects or bugs are present even under magnifying glass. I am wondering if all of these are due to my myeloma being active again, and if anybody else experienced this?
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Chrisva773
Acute Myeloid Leukemia Discussion • July 15, 2025
Vidaza & Venetoclax Journey, Thinking About a SCT
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Hi to everyone my first post as I’m new to health tree. I was diagnosed with AML in November 2022. My only symptom was feeling weak and at a regular checkup with my cardiologist bloodwork showed extremely low blood count (5.5). I was admitted to the hospital and 3 days later was diagnosed with AML. I had a great oncologist who started me on vidaza chemo and oral venetoclax (oral) not sure spelling which put me in remission right away and for the exception of getting a case of Mercer while in the hospital I’ve enjoyed great health with little to no side effects unfortunately I’ve lost my oncologist and not in love with my new one. He has reminded me that about 36months is the effectiveness for vidaza but with my mutation he feels good he can get me back into remission and that is when I need to seriously consider a stem cell transplant. I will continue to enjoy my good health and cross that bridge when I have to. Anyone similar journey?? Chris
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