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.

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dppmeeks 11/25/2012

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 ?

xuelan 12/01/2012

Phil,

I am not sure what would give you a "green tint" in your throat, because thrush is a whitish (perhaps a bit yellowish) coating, but not green. On the other hand, being "flooded with antibiotics" only predisposes rather than reduces the risk of candida pharyngitis. There is nothing wrong with doing a little gargling with an antifungal. Drink a lot of warm teas etc. and a lot of fluid in general. It will make your throat feel better. Also, make sure you do not have a fever.

Cliff

dppmeeks 12/01/2012

Thanks cliff.. i contacted my Pharmacist and she said to start back on the bactrim and Nystatin .. hopefully itll take care of it.

dppmeeks 12/01/2012

Ok.. i hope i dont sound like a Hypocondriac.. but.. lately it seems to be worse. It seems like a lot of times when i get up my heart rate immediatly rises and i get dizzy.

Today i was driving back from my daughters house, about 20min. drive and when i got home and got out of the car and started walking toward the house i kinda got this tingling feeling all over and got dizzy again. Its been happening a lot lately.

I was talking to my oncology pharmacist and she said its called orthostatic hypotension. My WBC was .085 on monday when they released me and my RBC 8.5 and HGB was 8.5. I figured by now my numbers would be in good shape.

As i mentioned earlier, i woke up feeling kinda under the weather, my oncology pharmacist said my WBC is still probably low and be careful about getting sick. I noticed im sore on both sides of my throat right under my jaw, i guess where those lymphnodes are the docs feel for.

Anyways.. has anyone experienced the heart rate/dizziness issue before ? I read it could be POTS ? or is it prob my numbers being low. Whenever it does that i can really hear my heartbeat in my ears also..

dbrowncsuaedu 12/01/2012

Phil -- your body has been though some nasty poisoning, and it is possible that all of your body organs have been affected. This is not like getting over a cold. I am very surprised you are driving -- I do not believe that I was driving at your stage in the game. Most people take a year before they are totally over all or most of the effects of chemo. I am not saying this to scare you -- just the opposite -- what you are going through it NORMAL. But I am saying it to slow you down. I heard of someone who was in total remission and went back to life as normal and had a heart attack a month later and it killed him. TAKE IT EASY, and back off when your body tells you that you need a break. It is good to push the envelope a LITTLE bit once you get finished with everything, but at this point I would be doing my best to rest up and get ready for your transplant. Take care -- dave

dppmeeks 12/01/2012

Thank you Dave.. I guess my body kinda fools me. I feel great sometimes as if there is nothing wrong, then all the sudden like today i feel bad and lil weird symptoms start happening. As much as i hate to say this.. Its kind of how i felt right before i was diagnosed. Id have good days and bad days. Ive always been an active person, not really into working out, but yard work, tinkering on cars, etc. so when im feeling good i go out and do it. I guess id better slow down a bit, im kinda anxious to see my Onc on monday and talk to em about whats going on and get my BMB for a piece of mind.

dbrowncsuaedu 12/01/2012

Phil -- if your onc does not tell you the same thing I did then please let me know. If I were you I would stay away from dirt, grease, people (especially kids), and the only exercise I would do might be some walking, not necessarily brisk. You have been through a major poisoning episode that, without the transfusions and other meds they gave you would have killed the average person your age if untreated. Your body will not recover for several months at best. So do yourself a favor and don't over-do it, We want you around for a long long time! -- dave

dppmeeks 12/01/2012

Yeah hes told me to be very careful. I guess im just hard headed and think im still my old self sometimes. We have a 16 month old that lives here i constantly worry about getting sick and today was my grandaughters birthday i just couldnt miss that considering what i have coming up. Im gonna slow down a bit. My onc said if my numbers are good then try and be like i use to be, prob not as much as im doing. My wife and neighbors get on me all the time about doing to much.

dbrowncsuaedu 12/01/2012

Well, I am surprised he told you that. If you over-do it you can easily pass out ... that spaciness is probably your brain not getting enough blood. I passed out once and hit my head on the hard wood floor because I was totally out of it standing up. If you get to feeling a bit oozy protect yourself -- sit down or get down until you stabliize. I am more concered about your catching something at this point -- lots of things going around and it could really interfere with your transplat plans. We will all be praying for you -- take care -- dave

dppmeeks 12/01/2012

Dave.. was it the chemo is what caused your dizziness? Or i guess the low blood count? I keep thinking my count is or should be back up to normal and maybe its not. I swear its the weirdest thing, im fine during the week and the weekend comes, docs office is closed, and weird things happen. Maybe its just me?

deleted_user 12/02/2012

Hi Phil,
I have had most of my difficulties on weekends also. Sunday seemed like the worst for me. This last time it was the same thing, I felt terrible on Sunday night. My fever started going up, my stomach felt like a nuclear battle was going on, and of course " the ring of fire" decided to add it's part. I did wait until Monday morning to call, basically because my temp was only 99F. Weird, but normal for me. I also had problems with increased HR after consolidation, I think it is like Dave said, our bodies are responding to the toxic stuff that they give us. Also I think it because counts are on the lower side, so the heart has to work a little harder to oxygenate everything. Just try to take thing a little easier and when you make positions changes, sit for a little bit then stand it will give your body time to equalize. Also do not be afraid to call and talk with your med team if things are not getting better. It is better to be checked out if needed. I just got through watching "Apollo 13" , forgot what a great movie it is. Have a great weekend with your family.
Take Care,
Suzanne

dppmeeks 12/02/2012

thanks Suzanne.. yeah i think im just pushing it a lil too much. I feel much better today, i guess im gonna have to learn to slow down a little. I just get cabin fever having to sit soo much..

Therese2 12/02/2012

Phil,
The lightheadedness and dizziness seemed to be my problem for quite a while (even when my counts were not bottomed out). I second Dave that you have to be super cautious to get to the lowest level possible so you don't hurt yourself. It is amazing how fast you can go from that tingling feeling to being on the floor. I know that I had to actually just sit down on the floor in a store one time. Awkward, but safer. Had a falling experience, like Dave, and that made me realize that there might be no time to get to a seat or know when you are going to fall.

Therese

dppmeeks 12/02/2012

Therese, thanks it helps a lot to know its not just me being silly. Im gonna try and slow down a bit and take it easier. Im feeling pretty good today thank god. I attended church and thats alwayz uplifting :)

deleted_user 12/02/2012

Just reading this one ow - osmosis???? I too started with the dizziness. Ughhh. I guess we do share every experience here.
I had planned on going out today, but when this happened chose to stay at the home front and do some simple cooking right next to the chair.
Feel better Phil!
Andrea

dppmeeks 12/02/2012

Hey Andrea... its nice to know im not the only one LOL. I go to the Onc tomorrow for CBC and prob be getting another BMB done. Im hopeing everything turns out ok, ive been feeling pretty good overall. I hope things are going good for you :)

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