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 ?
As my daughter would say when I go to the doctor and tell her that I promise to ask a question about something, "If you don't, don't talk to me." LOL. Beautiful family. I can't believe you have a grandchild. I am going to be 60 and have 3 unmarried children.
Cliff
Yeah, i get that a lot. My daughter w/kids isnt my biological daughter shes 30, but, ive been her "dad" since she was 7. I was married before for 15yrs and her mother, my ex (thank god) LOL lives in florida with my son. My two daughers live up here near me so i try and see them when i can. My other daughter is 26, were not getting along very well right now so its kinda bumming me out but im trying to mend things.
I posted a pic of my grandkids in my photos section :)
I am only saying/writing this once and hoping I don't think it again.....I am so afraid of the transplant process. I feel dumb being this scared after all I have already gone through. I know I will be wrecked again, but the good news? They wrecked me before and I now feel fantastic! I have been the queen of "nothing scares me", heck yesterday an obnoxious driver kept beeping his horn for no reason, I yelled out loud, " you don't scare me, I have AML ! Afterwards, I thought I was half nuts (I forget people shoot people these days). Yup, survived leukemia, died in a road rage.
So , I also reached out to a friend who is now a Marionist Brother. he shared a wonderful thought about my fear. He says, "you don't need great quantities of faith - faith the size of a mustard seed is enough and Jesus is protecting your heart, so there is no cause for worry about it." He adds, " my husband and children are living witnesses of God's love for me and beneath all the fear and deeper than the fear can ever be, is LOVE. It is In those most silent moments that you sense the presence of that love. It made me feel better thinking that the love I get every day from all of you and my family is really the living witness of God's love. If love feels this good, there is nothing to fear. It is, in fact love that we all want.
Be well. Peace,
Andrea
I understand about getting your AML anger. LOL. Last time i was discharged i guess it was the steriods but i had a driver honk at me and i flipped em off without even thinking about it which is not like me LOL. I try and keep my AML temper under control.
Im trying to mentally prepare for the transplant and the best thing i can do is keep my mind focused on God, My family, and the outstanding friends i have on here for support and know as you weve been thru so much and the transplant is a gift from God and dont fear it, embrace the gift he is giving us.
My two favorite bookends. You are both experiencing your anxieties in tandem. In a way that's good, because you can share experiences, worries etc. I will not sugar coat the process of preparing for a transplant. It is bad, possibly worse than the inductions. However, it does not SEEM as bad, because the gold ring is so close to both of you right now that you can just reach out and grab it. It's OK if both of you grab the same one, because you have started on the final leg of your journeys together. And you are absolutely right about God. You two have been exemplary human beings, and it is so clear that the Lord is in both of you right now. You can exhale...you are being protected by God through your doctors, nurses, nurses aids, the guys who clean your room, the food people.....all of them. You know that the rest of us will be here right behind you. Like a "truth" game....it doesn't matter if you fall backwards along the road, because we are here to prop you up, as you have propped us up when we needed you. It's funny, I have imagined what everyone who posts here sounds like, and I hear your two voices loud and clear. I dare one of you to sing at the top of your lungs at least one time that you are in the hospital. You would be amazed how cathartic it is on one hand, and how liberating it is on the other. Scream it out! You are both going to get healthy. . . and deep inside, if you peel away the expected fears and anxieties about the unknown, deep, deep in your cores, you know that I am right. This is your time to rise from whatever ashes you think that you are currently in and emerge like a newborn. That's why the nurses call your transplant day your new BIRTHDAY! It is. You are reborn a healthy person. It may take a bit of patience and acceptance to realize that you will undergo metamorphosis at a pace that you cannot predict....but you will. Both of you. You have my sincere respect and love. Two champions.
Cliff
P.s.Cliff, ... hope you like the pics :)
If my arse isnt too sore ill get on and let you guys know how it went. I pray everyone has a blessed night :)
Wishing you the very best and your words really brought me almost to tears. A lot of things do lately. I say what I feel and I have such good vibes for you. It's funny, but I never feel sore after a bone marrow biopsy, and I never find that they hurt.
I hope that your biopsy is as fantastic as you would like it to be and that you get ANSWERS. You deserve to be informed.
Have a safe trip.
Your friend,
CLIFF
I'm sorry to hear that the transplant is going to be delayed. It is frustrating to play this waiting game when you wnat to get all of this over with.
I know that I was anxious to get on with it. But, there were delays and it took so much longer than I had ever imagined. The consolidation treatments do take it out of you, but they help to insure that you stay in remission so that the transplant can take place. I had so many consolidation treatments before I relapsed and then when I had to have another induction and more consolidation, I was bummed. So I know how you feel. Main goal is to stay in remission, so even with the delay, you are still on the right track.
Oh, about the weight loss. Not to worry. Mark my words, the weight will come back. Maybe there are people who got underweight and stayed there, but I haven't met them yet :). Most of us seem to have the opposite problem--we got over treatment and the pounds just keep on adding up!!
Keep your spirits up. This is a scary unknown thing, so I hope you have my transplant experience, which was an easier time with transplant chemo than either of my previous inductions, and no infections, and no readmissions to hospital after transplant. Remember that I'm older and was totally smacked down by the treatments that got me into remission the first time before I relapsed, so I didn't start out the transplant process with a strong body.
Thinking of you all the time.
Therese
The transplant coordinator told me today there was 3 defeinite 10/10 matches so not to worry if something happend with this first one. Its just a matter of sched. everything all at the same time so i guess were waiting on the donor. Im hopeing god blesses the donor for doing such a nice thing to help me...
That is certainly heartbreaking, but thank God you will have others to choose from or this one will be able to help you in December. Don't worry about the consolidation. It seems to get easier to bear each time. Maybe you will be able to enjoy Christmas at home. Always praying for you,
Cliff
You've got the right attitude and the right spirit. I know that each day seems like a year when you are in the hospital, waiting for results, or waiting for scheduling. However, soon all this waiting will be behind you and you'll get to your happy transplant day--new bone marrow and a new lease on life.
You're right. The good thing is that you have not only a donor, but more than one. That's something great to wait for:).
Try to enjoy your Christmas with family and if you have to do another consolidation, remember that it will be your last consolidation. Then just chemo for transplant prep.
I gotta say just one more time how happy I am that you have donors. I worried a lot about that earlier in the fall. Things couldn't be better with multiple matches. Hooray!
Therese