Acute Myeloid Leukemia

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Acute Myeloid Leukemia
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    I’m new here!

    Hi, my name is Vorlex. I'm here because I have Acute Myeloid Leukemia in remission after a stem cell transplant. I’ve been suffering from increasing chronic pain that is becoming debilitating and I’m looking for suggestions to cope or similar cases.

    #MightyTogether #Leukemia #MyalgicEncephalomyelitis #Fibromyalgia

    4 comments
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    Tired and depressed #Fatigue # depression #AcuteMyeloidLeukemia #BMT #CognitiveIssues

    I am feeling so tired and hopeless. I don’t know how to get out of this; how to get a meaningful life.

    4 comments
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    My husband and Energy

    My husband says he had more energy today And enjoyed his beautiful wife!
    Life is what you decide to do with it! Keeping our Father in the forefront is Essential. Thoughts from hubby!
    #AcuteMyeloidLeukemia

    2 comments
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    How do you cope when your reason to live dies?

    My 4 year old son passed away March 8th from a year long battle/relapse with AML Leukaemia. Every day is a struggle. I don’t know how I’m supposed to live with this heart ache for the rest of my life.
    #Grief

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    Faith And Heros

    It takes faith and trust when your oncologist says “ your prognosis does not look good.” My hero is my husband. He was diagnosed with AML three years ago!
    I have never heard him say “Why Me?”
    I have said to him, “you are indeed my hero and I admire you.” I am counting on many more years with my love. Married 29 years and I encourage him daily as he remains my hero. I know he is a great man of faith and he is my Hero.
    Be blessed

    #AcuteMyeloidLeukemia

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    Please help with an end of life wish!

    My close friend Cara Heard was diagnosed with Acute Myeloid Leukemia in August of 2019 and has endured four rounds of chemotherapy, countless hospital stays and endless pain battling this aggressive form. Yesterday her all physician care team sat her and her family down and said she has progressed into the finale and it's terminal. She was given a few months. Her final wish is to visit the beach with her fiance and her closest loved one. I started this fundraiser to cover those costs as well as funeral costs. Anything would be greatly appreciated and cherished. Even a share to spread her story is amazing.

    www.facebook.com/donate/511062233121448

    #Leukemia

    3 comments
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    Coping with MDS  #TriggerWarnings   #Death

    In December of 2018, I was diagnosed with myelodysplastic syndrome (MDS). MDS is a bone marrow cancer where the body produces abnormal blood cells that don't mature like they should. It can progress to acute myeloid leukemia for some. The only known potential cure is a stem cell/bone marrow transplant. At diagnosis, I was very anemic and my platelet count had gone to as low as 6. Normal is around 120-400. A relatively minor injury could have been a serious issue; a major one would have almost certainly been fatal. There were times that I spent most of my day on the couch to avoid a fall, only getting up to go to the bathroom or to stretch my legs. Sharp objects were used only when absolutely necessary. I was always fatigued, and a simple trip to the bathroom would make my heart pound like I'd just jogged up 10 flights of stairs. I would bruise so easily that I would wake up in the morning to find new "mystery" bruises. My bones hurt. The stress of it aggravated my anxiety and depression. It drained me physically and mentally.

    Fortunately, I have responded well to treatment. The symptoms are still there, but they are less intense for now. There are still bad days, but they are fewer. For the past 10 months, I've gotten chemotherapy to slow the progression and my counts have been staying in the near normal range. But it isn't a cure, so the stem cell transplant was planned from the beginning. One of my brothers is a half-match and will be my donor. It means I will be away for Christmas and ring in the New Year in a hospital bed. It's overwhelming, and emotions run high. I do things to keep my mind focused. Things like purging my house of clutter, with a vengeance. In addition to giving me something to do for a distraction, it will serve a dual purpose. A less cluttered house will help with healing when I come home, and it's giving my family less of my belongings to deal with in the event of my death. I go to therapy regularly.

    We've been trying to prepare for months, but now it's mere weeks away and I still have so much to do and think about. I don't expect to get every little thing done. That would be unrealistic, and doing what I can manage to get done will make it easier for my family if I don't make it through the transplant. That makes me feel better. I'm optimistic, but I know that there is a significant chance that I will die during or after the transplant. Yes it's helpful to healing to have a generally positive attitude when you're sick. For me though, trying to be positive 100% of the time with no bad thoughts allowed makes it easier to put off things I need to do. Living wills, health care proxies, and DNRs are hard to think about, but that is what I have done. I can't ignore the bad parts; I can't leave my family wondering what my wishes are. So I will be preparing for the worst and sincerely hoping for the best! #MDS #MyelodysplasticSyndrome   #coping  #Death

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    Stem Cell Donors

    It’s 6 years ago today that I had a Bone Marrow Transplant for relapsed AML I was fortunate to have a family member to be my Donor, but too many people are not that lucky! If you can, please consider registering to be a Stem Cell Donor & potentially save someone’s life! Thanks #AnthonyNolan #DKMS #BMT #BoneMarrowTransplant #StemCells #StemCellDonation #Leukaemia #AML #Cancer #AcuteMyeloidLeukemia #savealife

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    Stem Cell Donors

    It’s 6 years ago today that I had a Bone Marrow Transplant for relapsed AML I was fortunate to have a family member to be my Donor, but too many people are not that lucky! If you can, please consider registering to be a Stem Cell Donor & potentially save someone’s life! Thanks #AnthonyNolan #DKMS #BMT #BoneMarrowTransplant #StemCells #StemCellDonation #Leukaemia #AML #Cancer #AcuteMyeloidLeukemia #savealife