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 ?
Phil -- The low blood count while I was in chemo. After I had completed all of my rounds and was in remission, it still took a couple months before I was feeling stronger. The low blood counts cause all of your organs to suffer and there is no telling which one might cause you problems even months after chemo. Cliff was having kidney problems as I recall. Since you are young this really should not be of great concern, but you need to recognize your limitations, especially now while preparing for a transplant. I was quite suprised your onc said to go out and act normal. I think perhaps he was saying -- you can do all the normal things, but just not as intensive and not as much. You need to back off fast when you start to feel things crashing in on you. It can really happen fast and you have to learn how to feel that early warning. -- dave
My numbers looked pretty good, i asked about the dizziness and rapid heart rate at times and the doc said im still kinda anemic. My HGB is at 9 still. Everything else is coming up. He said like you guys told me i need to take my time doing stuff to keep my heart rate from jumping up. Earlier today i felt crappy again and now im feeling a lil better, i guess therez gonna be good days and bad ones..
Like they say in French, sans doute (no doubt). I am 15 months post transplant and I still have a heart rate around 100 most times. That is because I am not working out (my doctor won't let me join a gym until my T-cells improve). Your hemoglobin of 9 is low enough for a guy like you to feel light headed with exertion. It will rise slowly (only to be knocked down again, LOL). Your marrow will be fantastic and you will be ready to roll. Right now, start rolling (with the punches, that is). You will be a champ at all of this and you will be able to put it behind you.
CLiff
That does sound like a busy day coming up. It will be nice for you not to have to deal with the PICC lines anymore, yeah! When your port is not accessed you can freely shower without having to cover the dressing. Also since they are doing a double port, means they have more options to infuse medication or blood at the same time. Hopefully your dizziness in improving everyday. I think you, Andrea and I have all been experiencing dizziness lately, bummer, but it will improve! Be sure to take it slow. Will be praying for a clean biopsy and a smooth procedure.
Take Care
Suzanne
Intrathecal Methotrexate
Cytoxan
Busulfan
No radiation
If i go with the trial ill be getting: I dont remember the drugs but its for 6 days.
She explained ill have to travel back and forth weekly to her office to be checked for about the first 6mo. Ofcourse she explained about all the side effects GVHD, Sores, etc. She said my blood work shows i have the HMV ?? virus its associated with like getting mono whatever virus that is. My donors cells have the same virus so the doc said she hopes the donor cells will keep it under control.
This whole thing has really got me rattled on what to do as far as the high dose or low dose trial..
I just had a transplant consult appointment this Monday and discussing all the potential side effects made me want to run for the hills! They also talked about a low dose vs high dose trial for me, it is a randomized trial, so I could be high dose or low dose. Talk about information overload. I plan to talk with my Oncologist about it tomorrow. I know this is the path I must take, thank God that he is walking it with me. Praying for wisdom for us both to make the correct decision. Good to be home though!
Take Care,
Suzanne
Im gonna have to do some praying and figure out whats the best to do. I know the high dose has been done for years and I guess proven but the low dose is appealing knowing you can possibly have less side effects.. Praying and asking god for guidance
I am with you both! I try not to focus on the potential side effects right now because I know I have to go for the transplant. To date, the road has been paved for me and I have to trust that the plan as it unfolds, though changed, is just the road that I need to take. Am I scared? You betcha. Do I have confidence that my team will get me through, yes. I anxiously await the day I am told you have 100% donor marrow.
I went to the transplant floor today to tell my nurses the good news - that they will be stuck with me for several weeks very soon. The head nurse introduced me to another Italian woman having a transplant today. Well, you get two Italians talking and no one else got a word in edgewise. We discussed the craziness of this all, how much we like to cook and how we plan on celebrating with the 7 fish dinner after we complete the transplant. I gave her my helpful hints to whine so they release you, they and we laughed. I already started negotiating an early release.
So, essentially, yes we are afraid., but we have each other, so we will go through this together with the support of those in our group who have been down the path.
Be well. Stay strong. Peace. In my prayers always.
Andrea
What can anyone say about your courage. Simply incredible and you will get through all of this.
Cliff
I checked my BP it was like 124/74 and my heart rate was 94 a lil high ive read thats normal for chemo patients as far as high heart rates. My blood sugar was 181 lastnight after eating and today its 124 so much better...
Ill just have to eat better i guess...