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.

307 Members
1,142 Posts
0 Online
Leukemias
/ Acute Myelogenous Leukemia (AML) Support Group

second opinion or not

dppmeeks
dppmeeks
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 ?
dbrowncsuaedu
dbrowncsuaedu
Yes, this is good advice to all. My son heard of a case where a man had what seemed to be a full recovery from AML, went out and started doing all his normal activities, and died of a heart attack. His words of warning to me when he saw me out chain sawing: "Dad, after all you have been through surviving chem, you sure do not want to die of a heart attack!"

In a sense I owe it to the insurance company and society in general that after putting so many resources into saving my life, I don't go out and just kill myself. If I was going to do that, I should have done it before being DXed with AML -- or at least before my treatment. Of course, I am not talking about justifying suicide -- I am talking about squandering the extra years of life that God and the medical community has given to us.

I hate to be brutally honest, but I guess I learned that from my son. ;o)

Take care -- dave
dppmeeks
dppmeeks
As most of you know ive been struggling with the decision to get involved in the clinical trial ( low dose or high dose ) for my transplant.

My neighbor sent me an email and it basically talked about putting things in gods hands, i went church on sunday and the pastor talked about "fretting" over things. I feel like i needt to let god decide whats best for me. ive basically decided to get involved in the trial since its random if you go low dose or high dose and let god choose my path. He has taken care of me so far and im sure he will continue to do so...
dbrowncsuaedu
dbrowncsuaedu
Phil -- that would be one way to handle it -- the important thing is that you are resolved in your heart that you are doing the right thing. Being part of the trial will contribute to others, and that is very good and right. Also, since you really do not know which path to take definitively (either the high or low dosage), letting the random number generator decide for you. There are balancing risks either way -- the high dose could cause bad side effects; the low dose might not work. (I would think that it it does not they could follow up with a higher dose; not possible with the high dose first.) Pray about it, sleep on it and when you wake up make your decision and never look back. My feeling is you are going to get through it one way or the other -- you are a fighter, and you are young. Just don't take any chances eating spicy pizza and running marathons. ;o) -- dave
dppmeeks
dppmeeks
thank you Dave.. i called today and informed the transplant coordinator that i would get involved in the Clinical Trial. I truly couldnt decide what to do and i just feel that God will guide me on the best path. I pray that god will watch over me thru this process and dont worry no more pizza and i surely dont run any marathons LOL.. Phil
dbrowncsuaedu
dbrowncsuaedu
Phil -- I believe you made the right decision ... it will produce some very useful information, and you can be proud that you will be part of it. Take care -- many will be praying for you -- dave
deleted_user
deleted_user
Hi Phil,
I do not know what I will decide yet, about the high or low dose trial. I am waiting on my last Thrs bone marrow results to see if treatment worked or not. So I feel like I am in a holding pattern for now. However I did ask my Oncologist about it and he felt like it was a really positive trial. I love your post about letting it rest in God's hands. I think Dave is right, that we do the best we can to trust in God that we are making the right decision and then do not look back. I am still praying about it as I wait for further results. Still gaining my strength. Glad you survived your Pizza! Praying for you and all, knowing God takes care of us.

Dave~ Love your words of encouragement!

Andrea~ Love your positive attitude, yes this is the path we must walk, but God gives us the strength to walk it with his Grace.

Take Care,
Suzanne
dppmeeks
dppmeeks
Suzanne.. thank you for the kind words. I couldnt come up with a clear decision so i decided to let God handle it. :)

Im going for my pre-transplant Bone marrow biopsy today, please everyone pray im free of any cancer cells :)

Phil
dbrowncsuaedu
dbrowncsuaedu
Phil -- you have our prayers -- have faith -- you are going to do quite well. -- dave
dppmeeks
dppmeeks
the bone marrow went well, not near as painful as the last one and my CBC's looked great. Thanks for everyones support. I will hopefully know the results of my BMB this friday..
deleted_user
deleted_user
Phil, if you go by my "unprofessional" theory, a less than painful biopsy means the disease is in "check". I suspect it was great!
Andrea
dppmeeks
dppmeeks
Thank you Andrea, thankfully it was tolerable :). Gotta go this friday for my port placement.
dppmeeks
dppmeeks
I got word on my bone marrow biopsy... No leukemia cells detected :)... im still in remission and I guess still lined up for the transplant. Thank you God !!
dbrowncsuaedu
dbrowncsuaedu
YES!!!!!! Congratuations Phil. You are well on the way to full recovery at this point. Just don't get yourself in trouble when you get your next pre-transplant round and all should be quite good for you. It is time to give thanks for God's many gifts. -- dave
dppmeeks
dppmeeks
Thank you Dave.. thankfully i dont have to do anymore consolidation rounds, im going for transplant on the 31st so they let me go a few extra weeks without consolidation. Im excited and scared all at the same time..
dbrowncsuaedu
dbrowncsuaedu
Phil -- sounds like you are on a roller coaster -- you know, you ARE supposed to enjoy the ride -- so ENJOY!!! Take care -- dave