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 ?
All i can say is God has blessed and been so good to me! :)
I agree with Therese. You are blessed to have so many potential donors.
I am also happy that we heard today that Ollie is alive and kicking in the hospital in Boston and being evaluated. That is a good early Christmas present for all of us.
Cliff
I seem to be having computer issues here in the Hospital. Just wanted to let you know that I am thinking and praying for you daily. Thank God you have available donors, sorry it has been delayed though. I will probably need a consolidation round also prior to transplant, and adventure each time for sure!
Take Care,
Suzanne
I had a call from the transplant coordinator, they want to admit me on Dec. 31st and have my transplant on Jan. 7th :). Ofcourse theres a catch... I had my last consolidation ending on Nov. 13th, so id be going from Nov. 13th til Dec. 31st without any treatment. My Oncologist and the Transplant doc are suppose to talk about it. I had my last BMB on Oct. 8th, and like i told them id rather have another BMB done to make sure im still in remission. I have an appt with my Oncologist on monday so i may have another BMB done just to make sure everything is in check. What do you guys think ??
That's a tough one. I wonder what your doctor says. It might make sense to just have a CBC done to see what your numbers are and if there are any peripheral blood blasts. If not, then things will probably stay quiet until you get your conditioning for the transplant. Maybe stall with the biopsy until mid-december. I just don't know. Will you be talking to your doctor very soon?
Cliff
Can't wait to see what your docs want to do. They will make the best choice between the risks of weakening you with another connsolidation to keep you in remission or watching you closely and letting you go for your chemo for transplant just a few days later than they might have originally scheduled. What Cliff says, as always, makes perfect sense.
I know that I went about 4.5 - 5 weeks between my chemo for transplant and my last consolidation. They did BMB at every turn (locally and at transplant clinic), so it all worked out.
I remember that I had a bazillion appts. in Ann Arbor (where I received the transplant) before I was every admitted. All kinds of preliminary sorts of testing (e.g. BMB, lungs, heart, gynecology, eyes)and consultations (transplant team, transplant researchers, social work, etc). The protocol might be different at different hospitals. I remember thinking that on the one hand, I wish transplant could happen sooner; but on the other hand, how will I ever get in all these appts before transplant??
Do you have appts scheduled for prep like me?
Therese
Phil, I am neurotic about my tests. I guess I feel like I have been broadsided so frequently that if I had a choice, I would get a BMB every week. I already get bloodwork twice a week now, so I am more relaxed about that. One for clinical trial and one set for top ups at the clinic.
I am glad you are scheduled now, and of your counts are stable, you may not need more chemo.
Therese, my work up is only chest x-ray, pulmonary function and echo. I also consult with the radiation team for TBI. I was just told this that they are changing some requirements in terms of the transplant work up. Not sure if it was because of my age or that I question every single thing they do for medical necessity.
Ok, well, I am happy for you Phil!!!! New year new marrow. I will know timing next week.
Be well. Peace.
Andrea
I think they are planning on doing another BMB this monday just to make sure which im fine with its a piece of mind for me.
Therese... I went a few weeks ago and had testing done.. i.e. echo, 15 viles of blood for testing, chest x-ray, etc. i guess thats all there gonna do.
I havent heard from my Onc yet as far as the BMB but id say there gonna do it. I have to go speak to the transplant doc this wednesday and the week of the 17th there gonna put a dual port in my chest for the transplant..
I think they are planning on doing another BMB this monday just to make sure which im fine with its a piece of mind for me.
Therese... I went a few weeks ago and had testing done.. i.e. echo, 15 viles of blood for testing, chest x-ray, etc. i guess thats all there gonna do.
I havent heard from my Onc yet as far as the BMB but id say there gonna do it. I have to go speak to the transplant doc this wednesday and the week of the 17th there gonna put a dual port in my chest for the transplant..
Different hospitals are so different in their preferences at all levels of treatment. I also think that because I am a little older they may have ordered a few extra things.
I'm happy that both of you are on track with solid treatment plans!!
Therese
Andrea is right. My long message to you has disappeared. Is someone trying to tell me something? Anyway, I feel good about their plans for you. Another bone marrow is fine to show you are still in remission. That will make you feel good about things. I guess you go in on New Years Eve and start your conditioning for the transplant. I found that part to be more intense than the inductions, because I had total body irradiation. I was very unhappy doing that 3 times a day, because you get strapped into this shield that protects your lungs and heart and stand there while you are getting zapped. It is a depressing feeling to say the least, which is why I continuously sang or whistled. Works well! Ask your docs if you are going to get TBI and if so, I hope they give you Palifermin. This stuff puts a gross coating on your tongue, but it protects your mouth, but sadly not the throat or esophagus from the radiation and chemo induced sores. When I got those, they gave me a self-administered IV pain killer which I was forced to use a few times (I don't like to take pain meds). Then, before the actual transplant day, you get a day off. I mean NO treatments at all. It is a great day, despite how poorly you might feel. The transplant is so fast that you should warn your wife if she wants to be in your room when it happens. It takes minutes and then you watch and wait for a good week with no cells to protect you from anything. You will probably need some transfusions of RBCs and platelets. And then, miraculously, your new marrow begins to take hold and your counts go from nothing to something very quickly. It is almost a supernatural feeling to know that the cells that are coursing through your blood stream are from some wonderful person who wanted to give you the gift of life. I still get chills when I think about it.
The bottom line, Phil, is that we are all here to answer questions, field your gripes (kvetches), and give you the strength to get through this. There is so much love about to come your way, that you will be sustained in so many ways. Please make sure you note your new "birthday." It is like being baptized. Your road to recovery is now set, and all you need to do is follow it. You must adhere to every instruction your doctor gives you at first to stay free of infection. Purell wil become your middle name.
I am so happy for you pal. My usual sappy self gets a little teary when I imagine your valor and strength as you go through what will hopefully be your final torture. But your faith will lead you out of the snake pit and into the light of day, and you will soon be bouncing your grandkids on your knee. God bless.
Cliff
My grandaughter is having her birthday party tomorrow so im thrilled to be feeling better so i can be there. Im so thankful that i get to spend christmas with the family and then get a blessing of a new year gift. God is wonderful and im so very thankful and you guys have been so very supportive and i cant thank you enough.