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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LoriChallinor 09/23/2013

Keir and I are "home" with my parents and today he had his first clinic visit. His counts are good - neutrophils about 900 now, platelets a little high, even, which the oncologist said was not unusual. He has good energy and is eating.

The doctor explained that Keir does not have positivity for the FLT3 ITB but rather the FLT3 TKD. Apparently there is much less information on this and they are not sure if it makes one more prone to relapse or not; in other words, it's a gray area. He has intermediate risk. He has a bone marrow biopsy now scheduled for Thursday with results a week from that. At that point we can discuss options.

I know everyone is different and am not asking for specific advice on Keir's situation. However, I am confused. How can we begin to evaluate which path might be the best - chemo first or, assuming a good donor is found, straight to transplant? Should we seek a second opinion? It is so much to absorb and if you are not a scientist, very difficult to assess. I am still fighting a great deal of fear. Every time I stumble across (I know better than to seek them out) survival statistics, I get plunged into a real funk. We are doing our best to keep busy and positive and are talking a lot of walks in the fresh air. Praying for everyone daily.

dbrowncsuaedu 09/26/2013

Lori and Julie -- good for you putting your faith in your medical team. There is a point where that is just the best thing to do.

E-mail me and I will send back a song that Miriam Williams (breast cancer survivor -- surgery, chemo and radiation) wrote called "Beyond the Darkness" that I set to music. My e-mail is dbrown@cs.ua.edu -- it has helped others get Beyond the Darkness. Getting absorbed in it to the point where you are singing it yourself just cannot hurt.

Thanks -- dave

xuelan 09/26/2013

Lori,

Your attitude is what will keep you afloat through all of this. This coming Tuesday is my 2 year bone marrow biopsy. I have promised myself that if it as good as I believe it will be, i will do everything I can to return to a normal life and will no longer dwell on my health unless forced to. I am ready to let go. Lori, just keep your eyes on the horizon, because soon Keir will be in my position -- happy, healthy, and whole.

Love to both of you,

Cliff

Aussiemumworry 09/26/2013

when we were in the first induction and then between consolidation we also had a slight delay and at first was very upset thinking this just needs to be fixed asap.

Once we settled into consolidation and started to relax it all became routine and something we just had to complete first before looking at options.

He is doing everything well, building back up his strength so he is in good shape for the next round .... just remind him to keep on drinking all the water and avoiding all shopping centres / people germs and bugs. He wants his body to just be fighting the AML and not have to worry about some other bug.

Wishing you all the best for Round 2 :)

LoriChallinor 09/29/2013

Keir continues to feel well, eat well, and exercise. We are keeping visitors to a minimum and being very careful about exposure to anything. Tomorrow is his first bone marrow biopsy since the one after induction was clear. We won't get the results for a week (the appointment is set up). I know a few other folks are getting bmbs this week as well, and I know I've been warned to stop stressing over them - and I'm trying. But so far, I'm having a lot of trouble beating down the anxiety. If the biopsy shows leukemia cells, do they re-do induction? I should have asked his doctor; there are always questions I forget. And this is a pretty dumb question but - I understand how the chemo wiped out everything - his bone marrow was "empty" on biopsy right after induction - but how does it prevent the leukemia from growing back but not the "good" or healthy cells? (obviously the goal)

Thinking of all of you and including you in my prayers daily.

dbrowncsuaedu 09/29/2013

Lori: They can do additional induction if they find a problem, but take my/our word for it -- we just do not think that will happen so close to his getting a clear BMB. I believe they are just trying to be safe. It is quite possible that the chemo killed the stem cells that were causing the leukemia -- that is the goal. Stem cells are what reproduce. One of these was mutated and started spawning others, some of which were stem cells themselves. If the chemo got all of the mutant stem cells then Keir would be effectively "cured." However, this is something that cannot be totally verified. There will always be some blasts still in the BMB -- up to 5% is normal and essential for healt -- these are baby blood cells that if normal will grow up. But it is just about impossible to state that none of these are remnant mutants that might cause trouble again. That is the reality of it, but I think most on this list will attest to the fact that once in remission we usually stay in it for some time. Depending on the type there will need to be a decision as to whether to get a transplant or not.

But so far you are doing the right thing. Remember, it is not the leukemia or the chemo that usually causes the big problems -- it is infections, So keep people way, keep his mask on him when outide of his room, wipe things down well, wash hands all the time, and all the rest of the things to protect your "bubble boy" at this point. Things will get better, but for now that is the reality.

Take care and keep the faith -- dave

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