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.
Hi all,
I'm struggling mentally and emotionally with all of this. Im wondering what advice you all have to get through this. I have a very strong faith that God has this all under control and part of His plan but that isn't helping me accept that AML may take me from my three young (age 5, 3, 1) boys and my husband. I'm so close to the end of treatment but I just feel like I'll relapse. I have subtype M4' NPM positive and FLT 3 negative and I'm only 34 years old. I went into remission after one induction but it was found in my cerebral spinal fluid. Everything falls into the "good" prognosis except my normal karotype and cns involvement which make me "intermediate risk". No transplant, just chemo. I have one round of consolidation left and weeks of radiation for the cns involvement. There is an end in sight so why do I feel so suddenly hopeless? The drs tell me it's a 50/50 chance of relapse and have tried to find a donor match but cannot due to some mutation I have. Seems like a bad sign to me. As I plan my sons 3rd birthday party, I can't help but think it may be the last one I'm at. I feel like chemo only (as opposed to transplant) is risky and the drs are taking a chance. I also thought I was getting HiDac (high dose cytarabine) as is standard treatment but I'm actually not. I'm getting AraC and Idarubicin. I'm told that is also standard treatment. Anyways, I apologize for the ramblings. The Drs are all so neutral and flat on my prognosis when I just want some hope. I'm so frustrated and scared. Thanks for listening!
I'm struggling mentally and emotionally with all of this. Im wondering what advice you all have to get through this. I have a very strong faith that God has this all under control and part of His plan but that isn't helping me accept that AML may take me from my three young (age 5, 3, 1) boys and my husband. I'm so close to the end of treatment but I just feel like I'll relapse. I have subtype M4' NPM positive and FLT 3 negative and I'm only 34 years old. I went into remission after one induction but it was found in my cerebral spinal fluid. Everything falls into the "good" prognosis except my normal karotype and cns involvement which make me "intermediate risk". No transplant, just chemo. I have one round of consolidation left and weeks of radiation for the cns involvement. There is an end in sight so why do I feel so suddenly hopeless? The drs tell me it's a 50/50 chance of relapse and have tried to find a donor match but cannot due to some mutation I have. Seems like a bad sign to me. As I plan my sons 3rd birthday party, I can't help but think it may be the last one I'm at. I feel like chemo only (as opposed to transplant) is risky and the drs are taking a chance. I also thought I was getting HiDac (high dose cytarabine) as is standard treatment but I'm actually not. I'm getting AraC and Idarubicin. I'm told that is also standard treatment. Anyways, I apologize for the ramblings. The Drs are all so neutral and flat on my prognosis when I just want some hope. I'm so frustrated and scared. Thanks for listening!
I spoke with my transplant doctor today. For all of you that are on 2215, be positive. She said it is a great bridge to transplant and many, many of her patients have done WELL!!!!!! (read that as remission!).
And Chicagomom, I specifically spoke about your CSF situation with your AML cells. She said it is not uncommon with M4 and you WILL DO WELL despite that. So just keep on keeping on.
I trust my doctor and spoke more about all of you at my visit than I did about myself. I just want you to know that I never lie about these situations.
I know that the anxiety is torture. I still am a bit of a nervous Nelly. It doesn't matter. Just worry about what's for dinner or whether it will snow again. Your health will take care of itself.
XO
Cliff