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.
Just wanted to share my uplifting feeling of "I'm going to beat this" with all of you. All of this time, my doctors have been saying I have a 50/50 chance of relapse and that my AML was in the intermediate risk category yet they were not doing a transplant. I finally found out why. A nurse pointed out to me that the only thing putting me in intermediate risk was the CNS involvement. My normal karyotype with NPM1 positive and FLT3 negative was in the favorable risk according to Leukemia & Lymphoma Society. Since they are doing radiation to be certain my CNS involvement is gone, the chance of that relapsing is very small. So as far as I'm concerned, I'm in a "favorable risk". This may be way off but it makes me feel better which, I believe, is half the battle. My middle son turned 3 on Sunday and we had a party for him. For the first time in a long time, I felt like I'd be here to celebrate many more birthdays with him and my other sons. It was a wonderful day. :-)
Hugs and prayers.
Karen
You are absolutely right. For some reason there is an immune response against a mutated NPM1 that actually puts you into a very favorable position. REJOICE!!!!!!!!!!!!!
Cliff
Jacki
I absolutely LOVE reading this post and I so relate to your feelings. When I was first DXd and admitted (same day) I picked up a booklet on AML on the floor where I was treated. This floor is dedicated to SCT for Leukemia and Lymphoma.
During my admission, one of the ONCs who has 30+ years specializing in AML, explained the significance of the cytogenic results of my BMB to determine the treatment path based on the three sub groups-favorable, intermediate and unfavorable. For better or for worse, I fixated on this. In fact, there was a patient whose DX was the coveted APL. I official had APL envy.
Two weeks into induction, I received the news I and many others prayed for-Inversion 16 with a negative CKIT and FLT 3-Favorable! At the end of Induction, my med team even provided a letter outlining my treatment plan that said in "writing" 70% probability of cure. I carry this letter in my purse and read it often.
Now fast forward to post consolidation that did not go as advertised. Although I felt great throughout, I struggled with VERY slow count recovery-outside of my ONCs bell curve. Such slow recovery that I had to have a BMB before every consolidation and reduced doses of AriC.
I did what Cliff (so brilliantly) tells us never to do. I asked my ONC a question that I should have NEVER asked-will the reduced dose effect the 70% cure. He said it may drop it to 50%. immediately he sensed the terror emoting from me. He back peddled somewhat and pointed out that there are several studies that show 1.5 (the lowest dose I received and is given in Europe) is just as effective as the 3.0 that is given in the US.
I am where you are. I choose favorable and so do you. We are survivors, we are Mommies who need to see our children's children. God has saved us for a purpose and we will fulfill it by living a full and meaningful life showing others God perfect love.
Blessings,
Julie