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 ?
Great news! Nice to have the dates set and know that you are on your way. Enjoy your Christmas holidays and don't worry too much. You are moving toward the final cure.
Best wishes,
Therese
You know how I feel about all of this. You are well on your way to your new healthy life. I am 100% behind you (so you cannot fall or fail). Your bone marrow result was FANTASTIC!!! Just go with the flow now and keep your eyes on the prize.
Cliff
I go in for my regimen on12/26. Transplant 1/3/2013
Andrea