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 ?
I just lost my reply. Must not have clicked ADD. I am glad that you are not FLT-3, but if you are in the intermediate group, prognostically, I think at your tender age you should have the transplant. It is your best chance at a long term survival. But, you should ask them to explain what they are thinking AND WHY. also, have they discussed the conditioning regimen (e.g., radiation or not?) How are the numbers this AM.
I'm with you, buddy.
Cliff
I just lost my reply. Must not have clicked ADD. I am glad that you are not FLT-3, but if you are in the intermediate group, prognostically, I think at your tender age you should have the transplant. It is your best chance at a long term survival. But, you should ask them to explain what they are thinking AND WHY. also, have they discussed the conditioning regimen (e.g., radiation or not?) How are the numbers this AM.
I'm with you, buddy.
Cliff
As far as my regimen i guess ill have to ask the transplant doc, as far as i know im chemo only.
Only thing im still a little clueless about, how or why are they making the transplant decision if the report isnt complete and the last part is still pending which i dont understand being it was done back in august?
Glad you are being sprung. When you meet with the transplant doctor, make him explain everything to you. Your numbers are on the rebound, Just go home and eat a big steak.
Cliff
Write a brief note if you have time, just to let me know that you are feeling well outside of the hospital. You might want to take a walk if it is not too cold. You need to build up an appetite for a steak, maybe on the barbecue.
Cliff
The report doesn't say you are negative for there mutations. It states that they are suspicious that the blasts are positive for FLT3 and NPM1 and that they will report the results in the addendum. Did you obtain this addendum? It is very important for understanding the issue. The addendum should clearly state your positive or negative status. But if you are truly FLT3 negative this is a great blessing. After so much confusion and the answers that contradict each other you definitely need the original document.
Btw.. i just got home and its soooooo nice! My numbers are still low so i gotta be careful but its nice to be home :)
So you are home! That doesn't mean your wife has to be your nursemaid. So pick up after yourself, wash the dishes, and clean out the fireplace, Cinderella.
Just kidding. The one good thing about the sick role is that you really get catered to. Normally, I do most of the cleaning and dish washing. Praying for good news of Weds. Something tells me that it will be, but even if the good news necessitates a transplant, you are young, healthy and strong and will sail through it. So don't fret. Predictions: Your platelets will be 49K, WBC 1,8K with ANC 0.9, HGB 8.9. Ok, if I am right, you get to have a backrub by your wife, if I am wrong, I give my wife a backrub. That's about it. When you don't work, you can't make money bets...and no, your wife did not put me up to it. Mine did!!!!!!!! LOLOLOLOL
Cliff
Tashka.. i spoke to the Onc pharmacist that gave me the report and explained everything. At the top of the report which i didnt see, she just text and explained to me.. it says addendum #1 Chromosome Analysis Report Reveals A Normal Result. The Onc pharmacist says thats the addendum saying i dont have the 3 markers ? I dont understand why they put that before the final comments i typed earlier but thats what the Onc pharmacist is telling me. Im still gonna ask the transplant doc on wednesday to make sure.
Tashka.. i spoke to the Onc pharmacist that gave me the report and explained everything. At the top of the report which i didnt see, she just text and explained to me.. it says addendum #1 Chromosome Analysis Report Reveals A Normal Result. The Onc pharmacist says thats the addendum saying i dont have the 3 markers ? I dont understand why they put that before the final comments i typed earlier but thats what the Onc pharmacist is telling me. Im still gonna ask the transplant doc on wednesday to make sure.
Tashka.. i spoke to the Onc pharmacist that gave me the report and explained everything. At the top of the report which i didnt see, she just text and explained to me.. it says addendum #1 Chromosome Analysis Report Reveals A Normal Result. The Onc pharmacist says thats the addendum saying i dont have the 3 markers ? I dont understand why they put that before the final comments i typed earlier but thats what the Onc pharmacist is telling me. Im still gonna ask the transplant doc on wednesday to make sure.
Tashka.. i spoke to the Onc pharmacist that gave me the report and explained everything. At the top of the report which i didnt see, she just text and explained to me.. it says addendum #1 Chromosome Analysis Report Reveals A Normal Result. The Onc pharmacist says thats the addendum saying i dont have the 3 markers ? I dont understand why they put that before the final comments i typed earlier but thats what the Onc pharmacist is telling me. Im still gonna ask the transplant doc on wednesday to make sure.
Tashka.. i spoke to the Onc pharmacist that gave me the report and explained everything. At the top of the report which i didnt see, she just text and explained to me.. it says addendum #1 Chromosome Analysis Report Reveals A Normal Result. The Onc pharmacist says thats the addendum saying i dont have the 3 markers ? I dont understand why they put that before the final comments i typed earlier but thats what the Onc pharmacist is telling me. Im still gonna ask the transplant doc on wednesday to make sure.
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