Acute Myelogenous Leukemia (AML) Support Group
Acute myelogenous leukemia (AML), also known as acute myeloid leukemia, is a cancer of the myeloid line of blood cells. Patients with AML usually present with symptoms such as fatigue, bleeding, infection, prompting medical attention. An abnormal blood test reading will then result in further testing in a hospital with a hematologist to determine AML.
I found this site almost three years ago when my brother was diagnosed in February 2014. Since I was not in on doctor visits, this became a place where I could turn with my questions, my fears, my worries. There were many here who helped and to each one of you I am very grateful.
My brother's subtype AML was one of the tough ones, made tougher by his Flt 3 positive factor. He had two bone marrow transplants (one my sister, one a young anonymous German boy). He was the first on a trial drug 2215 at the University of Pennsylvania Hospital.
Unfortunately, we were told in late February he was not in remission and there was little hope. The doctors gave him weeks to months and he said, "This is not satisfactory." He had them shaking their heads. He outlived those in the trial by a long shot. He made it 7 months past that meeting in February. Sadly he developed pneumonia at the very end of September, was hospitalized on Oct 3 and passed on Oct 7th.
What a warrior he was! He never once complained and fought until the very end.
I want all of you who are in the midst of this battle to know that his was not a good prognosis from the start and yet he found hope and meaning in every day. There is hope in this battle; it was what sustained us for almost three years. Don't let this news dishearten you. Fight the good fight. There are survivors --- go out and beat the shit out of this disease and may we all live to see more and more victories with each passing day. Go forth and fight and live for my brother! I will continue to pray for all of you, especially Tony who had his transplant the same time as my brother's first in July 2014.
Susan (aka Twilight)
I've been thinking about you and Dave a lot lately and praying for you daily. I can't put my sorrow into words but know that I am sending love and support your way. Dave certainly was a fighter and your posts have helped sustain my energy and fight through very tough times, thank you for sharing so much with this community.
John
You wage that war with every ounce of energy you have. I thank you for the kind words. I have not enjoyed this site since it changed but I do check in once in awhile and try to follow those with whom I have made connections over these almost three years.
I promise to keep you and everyone battling this terrible disease in my prayers. Please ask God to give my family, especially my 91 year mother, my niece and my sister-in-law the strength the get through services this weekend and the days ahead.
I'm so sorry. Your brother is a hero and a warrior. I will keep you and your precious family in prayer. Like you, I continue to pray for everyone, I know, who battles this disease.
Sandra
I am so very sorry for your loss. I felt a unique connection to you and your brother's situation as my dad, too, was treated at Penn. You are a wonderful sister and your love and devotion toward your brother were evident during his battle. He was lucky to have you and hopefully you can smile knowing what a wonderful gift you gave him. I wish you peace and comfort during this difficult time. Big hugs for you xo
Thanks for your kind words.
Susan
I am so so sorry to read about Dave's passing, so devastating. I remember following Dave and jacks(ceeceesbrother) journey with such hope.
As others have said, you are an amazing sister. Right after my aml treatment my amazing brother was dxd with NHL. Two blood cancers in the same family, wierd. We bonded like never before due to cancer, trying to find some good.
Reading otherspraying for you makes me miss this support group so much. People here are so sweet and nurturing.
Believe me, other AML groups are not like this one. I prayed everyday for the Daves, yours included. I will continue to pray for you Susan. For peace and comfort only almighty God and His Comforter , the Holy Spirit can provide.
Blessings
Julie
Today when the family had a private viewing before tomorrow's services, I thanked my brother for the rainbow. When we got back to my sisters house, we looked up between two trees, and there was another rainbow- once again, no rain!
Maybe it means nothing but I choose to think otherwise.
My heart breaks for our pain and lose but it also aches for all of us so touched by this disease. I keot thinking about cc and her brother. His situation held many parallels to my brother's and I knew that things turned quickly in his case. I pray these two heroic men meet in the hands of God.
Thanks and prayers to all here.
Susan
Love
I am so very sorry. I believe we are given signs and we just have to open our minds and hearts to see them. I think your rainbows were signs that Dave is at peace and no longer suffering.
Hugs to you and your family.
Karen
Blessings
Julie
Hope in the knowledge that this world is not our home
Words fail me! I am so incredibly sorry to read of the loss of your brother Dave. Our families embarked on this transplant journey virtually at the same time and we've been through so many similar challenges. I pray you and your family can get through the services and days ahead by holding onto the happy memories and each other and the love you all share for Dave.
And for you, in the midst of your grief, to think of and mention my Tony, is so touching,
Love you, please stay in touch Susan
Xoxo
Lea