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.
This is gonna be kinda lengthy, sorry,.... here we go..
As most of you know i was re-admitted yesterday, well, today i spoke to a doctor (oncologist) thats new to my oncologists practice. He said he looked over my chart and said " your last bone marrow shows complete remission and you may not even need a transplant " He didnt know, ive been already talking to UK about a transplant which i mentioned to him and he kinda started back-peddling. I mentioned to him about the clinical trial and he said oh yes you should get involved. Heres my concerns and hopeing you guys can help me...
I was concerned if i was FLT3 or not, ive asked several people the head nurse practitioner, the nurse transplant coordinator, and everyone has said no it doesnt show in your records. Now, i asked the oncology pharmacist what my cytogenetics were and she text me today and said she thought i was:
FLT3
NPM1
CEBPA
She said the last two are better prognostic factors which moved me to Intermediate risk. Now, im assuming she got this from my original bone marrow back in August when i was diagnosed. Here is where im very confused... ive had two bone marrows since, the nurse today showed me the report from the last one i had back Oct 8th from the Hemotologist and it said (no signs of lukemic cells in marrow) last report pending.
Im sure the "pending part" is the cytogenitics. So...are they baseing my treatment off the original bone marrow and saying i should get a transplant and the two bone marrows ive had since the original basically are saying the chemo has kept the AML in complete remission ? I truly think thats what the doctor i spoke to today was getting at, its in complete remission.
What concerns me... ive had several different answers from several different people in the same office about me being FLT3 or not. Ive read enough to know.. If im not FLT3 then i dont need a transplant, are they reading my initial report or just my most recent ? I sure dont wanna go thru a transplant if i dont have to. I guess i need to get the initial report ?
As most of you know i was re-admitted yesterday, well, today i spoke to a doctor (oncologist) thats new to my oncologists practice. He said he looked over my chart and said " your last bone marrow shows complete remission and you may not even need a transplant " He didnt know, ive been already talking to UK about a transplant which i mentioned to him and he kinda started back-peddling. I mentioned to him about the clinical trial and he said oh yes you should get involved. Heres my concerns and hopeing you guys can help me...
I was concerned if i was FLT3 or not, ive asked several people the head nurse practitioner, the nurse transplant coordinator, and everyone has said no it doesnt show in your records. Now, i asked the oncology pharmacist what my cytogenetics were and she text me today and said she thought i was:
FLT3
NPM1
CEBPA
She said the last two are better prognostic factors which moved me to Intermediate risk. Now, im assuming she got this from my original bone marrow back in August when i was diagnosed. Here is where im very confused... ive had two bone marrows since, the nurse today showed me the report from the last one i had back Oct 8th from the Hemotologist and it said (no signs of lukemic cells in marrow) last report pending.
Im sure the "pending part" is the cytogenitics. So...are they baseing my treatment off the original bone marrow and saying i should get a transplant and the two bone marrows ive had since the original basically are saying the chemo has kept the AML in complete remission ? I truly think thats what the doctor i spoke to today was getting at, its in complete remission.
What concerns me... ive had several different answers from several different people in the same office about me being FLT3 or not. Ive read enough to know.. If im not FLT3 then i dont need a transplant, are they reading my initial report or just my most recent ? I sure dont wanna go thru a transplant if i dont have to. I guess i need to get the initial report ?
Ok, now it makes more sense. I too had a normal result. Believe it or not, normal chromosomes put you in an intermediate risk group. There are defined chromosomal abnormalities that actually put you in a better risk group (always chemo only), and the FLT-3, puts you in a high risk group. I was 58 when diagnosed, and my doctor suggested a transplant right away. You are much younger, and I am sure that is what they will recommend to you.
Let me know what you learn. Enjoy being home.
Cliff
Ok, now it makes more sense. I too had a normal result. Believe it or not, normal chromosomes put you in an intermediate risk group. There are defined chromosomal abnormalities that actually put you in a better risk group (always chemo only), and the FLT-3, puts you in a high risk group. I was 58 when diagnosed, and my doctor suggested a transplant right away. You are much younger, and I am sure that is what they will recommend to you.
Let me know what you learn. Enjoy being home.
Cliff
Ok, now it makes more sense. I too had a normal result. Believe it or not, normal chromosomes put you in an intermediate risk group. There are defined chromosomal abnormalities that actually put you in a better risk group (always chemo only), and the FLT-3, puts you in a high risk group. I was 58 when diagnosed, and my doctor suggested a transplant right away. You are much younger, and I am sure that is what they will recommend to you.
Let me know what you learn. Enjoy being home.
Cliff
Ok, now it makes more sense. I too had a normal result. Believe it or not, normal chromosomes put you in an intermediate risk group. There are defined chromosomal abnormalities that actually put you in a better risk group (always chemo only), and the FLT-3, puts you in a high risk group. I was 58 when diagnosed, and my doctor suggested a transplant right away. You are much younger, and I am sure that is what they will recommend to you.
Let me know what you learn. Enjoy being home.
Cliff
Ok, now it makes more sense. I too had a normal result. Believe it or not, normal chromosomes put you in an intermediate risk group. There are defined chromosomal abnormalities that actually put you in a better risk group (always chemo only), and the FLT-3, puts you in a high risk group. I was 58 when diagnosed, and my doctor suggested a transplant right away. You are much younger, and I am sure that is what they will recommend to you.
Let me know what you learn. Enjoy being home.
Cliff
Ok, now it makes more sense. I too had a normal result. Believe it or not, normal chromosomes put you in an intermediate risk group. There are defined chromosomal abnormalities that actually put you in a better risk group (always chemo only), and the FLT-3, puts you in a high risk group. I was 58 when diagnosed, and my doctor suggested a transplant right away. You are much younger, and I am sure that is what they will recommend to you.
Let me know what you learn. Enjoy being home.
Cliff
Ok, now it makes more sense. I too had a normal result. Believe it or not, normal chromosomes put you in an intermediate risk group. There are defined chromosomal abnormalities that actually put you in a better risk group (always chemo only), and the FLT-3, puts you in a high risk group. I was 58 when diagnosed, and my doctor suggested a transplant right away. You are much younger, and I am sure that is what they will recommend to you.
Let me know what you learn. Enjoy being home.
Cliff
Ok, now it makes more sense. I too had a normal result. Believe it or not, normal chromosomes put you in an intermediate risk group. There are defined chromosomal abnormalities that actually put you in a better risk group (always chemo only), and the FLT-3, puts you in a high risk group. I was 58 when diagnosed, and my doctor suggested a transplant right away. You are much younger, and I am sure that is what they will recommend to you.
Let me know what you learn. Enjoy being home.
Cliff
Ok, now it makes more sense. I too had a normal result. Believe it or not, normal chromosomes put you in an intermediate risk group. There are defined chromosomal abnormalities that actually put you in a better risk group (always chemo only), and the FLT-3, puts you in a high risk group. I was 58 when diagnosed, and my doctor suggested a transplant right away. You are much younger, and I am sure that is what they will recommend to you.
Let me know what you learn. Enjoy being home.
Cliff
ill work on those dishes and laundry :)
Be good.
Cliff
As i was saying im THANKFUL AND BLESSED they have found a donor for me. Is it normal to be scared ? I guess the closer i get to the transplant date ( about 2 weeks ) the more it sits on my mind. I feel like such an ass because i know theres people out there needing donors, i guess im just so worried about something going wrong.. GVHD, Catching some kind of illness, the after effects.. etc. I have faith in God to watch over me, he has so far and i know he will then. I guess im just scared knowing the high dose of chemo and what it can do to you.
Im sorry for sounding like such a wuss, ive tried to be strong for my family, friends and everyone and i try not to let my fears show but as each day goes by it gets tougher. Im sooo very thankful to have everyone on here to lean on and your support. I try so hard to keep in my mind that ive done well with the chemo so far, but, knowing the blasting im gonna get truly worries me, its weird but its as if im starting all over again. I try to keef in mind once im done with this transplant, God willing, ill be healed and be my old self again so the prize is well worth the price but its scary as hell. Have any of you experienced this ?? ( probably a dumb question huh )
In any event, I never leave an office without having 1000 questions answered. My doctors expect it these days. I ask everything. I even ask about things I read on these posts.
As for cytogenetics, I paid attention to nothing beyond FLT3 because it seemed to trump all others. I knew at that moment I needed a transplant. My doctors have added me to the critical list for transplant , which is strange only because I feel great.
So, ask one million questions, get straight answers and make them repeat until YOU understand what is being said. If one person cannot explain it, ask to speak to another physician. I frequently have someone with me taking notes so I can review them later. I stay off the Internet, except for actual medical journal articles or results from clinical trials, but like Cliff, I will not look at statistics..
I am sorry you are going through this mess. It sounds like it is being sorted out and I hope you have been sprung.
Andrea