My WBC stayed below 1.0 until day 25ish so I wouldn't worry about that yet. Everything I have heard from my doctor indicates that you have just as good a chance for remission with the second induction and that it wouldn't change the overall chance of successful treatment. However I will defer to the more experienced members regarding 2nd induction.

The doctors will be frustratingly noncommittal, especially before the first BMB. Not saying they get any better after that but I didn't notice it as much after I had those first results.

I am so sorry you're both having to deal with this now. It's horrible whenever it happens but going through it during a time that is special to you makes it even rougher.

Jen

Thank you. Keir's is .23 (below 1.0) so I'm not worried about it being too low but rather too high - that is, did the chemo get all the blasts? Thank you so much for the info about the second induction - darn internet. I'm sorry I'm so wretchedly needy with this group.

I know doctors are frequently vague but it is incredibly hard. I'm reading some of the other threads on the discussion group and seeing how amazingly people do with really challenging situations, which is helping.

I think anything less than .5 is considered zero but again I would defer to the more experienced members. I don't remember mine ever hitting 0 exactly and they hovered in that .2 to .5 range for a large part of my induction.

When does Keir have his BMB?

Jen

I have so much to learn. They said "nearly zero" and then gave that number so I really didn't understand. Keir's bmb is on 9/11. He is doing okay. I'm fighting hard to stay positive. This is ridiculous, I am very ashamed. I have been reading these boards and so many people are showing such immense courage. I feel dreadfully needy and I apologize.

Lori,

Welcome. You are not needy this is your baby and that's that.
My WBC never hit zero I stayed at .2. Loads of people do second induction and succeed and triumph and Keir will too.

Stay off the net, try not to focus on what you read. When I was diagnosed I was high risk I looked on the net and the first paper I read stated "prognosis poor, succumbs to disease" I was devastated, but here I am 13 months post transplant I have problems and speed bumps but I'm alive and in remission.

Prayers for you and Keir.
Planxty

Lori -- let me answer your question -- NO it is not true. I had to have a second induction round and that was four years ago -- and I am now 69. This is crazy to tell people things like that -- where does this junk come from? I think if you did a survey of all the participants of this forum you would find probably about half had to have a second induction round. Of course, it would be nice to get it the first time, but it is certainly far from essential. Please hang with us and ask plenty of questions as they arise. The chances depend more on attitude than anything else. I started out with a bad attitude and if some things had not turned me around, I would not be writing this today for sure. It is not fun, but it does not have to be miserable. There are a lot of things that can be done to improve things. Please keep us up on how things are going -- dave

Hi Lori, even though we were told how it all works in the first round we also found it a little like watching paint dry.

We then went through a second and third round consolidation and knew what to expect so it was a little easier.

The way it was explained to us, was it was like a 28 day cycle (im in Australia so not sure how its done over your way) .... The chemo would be given (for mum over 5 days)

Day 1 would be the first day of chemo. She should expect that her figures would "bottom out" about day 10 and stay like that until about day 21. During this time her White Blood count was actually about 0.10 so much lower than your sons. From day 10 she had ZERO Neuophils, and her platelets got as low as 6 some days. During this time she would have blood bags and platelets given to her as they like to have the platelets over 10 and the Haemoglobin over 70 but this sometimes got to 65.

this is the time you have to be very careful of infection as the Neophils (immune system) is at Zero.

After day 21 they should start to increase, slow and steady until day 28 then she had a 2 week break which she was out of hospital and built back her strength.

After the 2 weeks we were back into it.

This is the time frame they gave us. We were lucky that her numbers did start back on day 19 and she was out of hospital by day 23.


Sounds like the doctors think he is responding well to the chemo and doing exactly what they should be doing

Hang in there the first round everything is new and weird and confusing :) ... don't hang on the figures but be aware of them so you know how everything is working.

xx

It is frustrating that there is so much misinformation online and I should have simply stayed off the internet generally as I did right after most people on this board advised it. I went online yesterday and it was NOT helpful. Survival statistics are terrifying - I was under the impression they were a lot higher, especially for young people. I am especially appreciative of the information about the second induction, as the online stuff was so bleak and the doctors here seem a little unwilling to go down the "what if" road until they have data, which I do understand.

Aussiemum, my husband is Australian and we lived there for five years. In fact, Keir was born there and is a dual citizen, but we are in Chicago at the moment. It sounds like some things are similar but others a bit different in terms of how they treat this.

Keir is feeling well except for some food issues. No fevers today, lessening diarrhea, and keeping pretty active. I am trying not to obsess over this or that number, and I am really grateful for the encouragement about the second induction issue. Can they put almost everyone into remission (in the induction phase) sooner or later? I understand that this is a long treatment, understand about the consolidation phase and options for treatment (somewhat) but am getting a little desperate for something to hang on to in the way of truly positive hope. Not sure why it's so hard except that we are entering week three in the hospital on Saturday and I'm alone here with Keir most of the time. It's kind of tough not to ruminate. I need to stay positive for Keir and I'm fighting hard to do that.

Lori

When reading information or statistics you need to take into account that the average age of AML is 70 years. Your son has his youth and therefore strength in his favor. I think if the doctors are happy all is progressing as expected then you can take some comfort in that, that there is every reason he should achieve remission. There are a number of people on the site who had a 2nd induction to achieve remission so it is possible. The doctors can not give you certainties but I think there is plenty of time to consider prognosis after you have dealt with the induction and the marrow biopsy is done and the doctors have more information.

I can imagine how hard this is for you, I have always said the only thing worse than having AML would be watching your loved one go through it. Try to deal with each day as it comes, as a patient that was what got me through and I refused to allow my husband to tell me what the Internet said I just tried to focus on the doctors saying all was going as expected. One step at a time.

Nicole

Lori

I agree with Nicole. One day at a time. there are many bends in the road with AML so there is not much use worrying about what ifs because you dont know which what if, if any, will apply to your son. Concentrate on treatment being offered at this stage.

The doctors are the specialists and they live and treat this decease every waking day.They have seen it all and are aware of best treatment options.

I lost my mum 10 weeks before I was diagnosed with AML and I remember my mum had this saying "this too will pass" and thats what I tried to keep front of mind...AML will pass. The treatments take time and AML is the biggest waiting game. You wait for bloods to drop then bloods to rise before we kill them all again and press the replay button.
I told my doctor that I was not interested in statistics unless they were 100% because even if my survival percentage was just 10% who is to say I cant be in the 10%. You never know which side of the statistics you fall into.

So just enjoy this time with your son. The one posiitve aspect, for me, about AML was it allowed me to spend so much time with my loved ones that I would otherwise have been too busy to do. It forced us all to slow down. This was a blessing .

Lisa

Lori: I think at least a month in the hospital during the induction chemo is standard, and a WBC of .23 is just fine at the end of that. If the blood counts start coming up as expected, the chances are that the BMB will turn out well and he will be in remission. The waiting is the hardest thing about this disease. The chemo takes time. The labs seem to take forever to come back. You can get preliminary results from the BMB in a few days but it takes over a week to get the definitive ones. The counts CREEP up (and sometimes back down). There is a lot of waiting, waiting. And the doctors are vague because, as they eternally say (and yes it drives me nuts), "everyone is different." It's true. That's actually both good news and bad news. It's bad news because it makes certainty nearly impossible and you just have to learn to live with a lot of ambiguity. A lot. But the good news about this "everybody is different" thing is that no statistics can tell you how Keir will respond, how he will do, what his prognosis is, when he will achieve remission. So stop reading them. Statistics are norms, they change all the time, they can't describe an individual.
It's a hell of a disease. I am not trying to minimize it at all. My statistics (I am in my late 60's) are much worse than Keir's. But here I am, after induction and consolidation, approaching a bone marrow transplant and feeling much, much better than I did the day I was diagnosed back in March. Stay positive and stay off the internet (except for this web site of course!).
Shoshone

Thank you all as always. Today Keir's doctors said they don't see any "peripheral leukemia cells" in his blood which sounds good but of course the bmb will be what they are really looking at. His labs are all good and as expected. He has no fever and otherwise at this point seems to be doing really well. We are talking a lot, walking a lot, and watching a lot of dvds and so forth and reading. Trying to make the most of the fact that we are in a holding pattern and not dwell on it too much.

Keir was able to chew some food today (for the past few days only soft food didn't make him nauseous) which was nice. His hair has not yet begun to fall out but we understand that can take a bit. This starts week three in the hospital. But we were told it would be a long haul and so no surprises. His doctors seemed more upbeat today, not quite sure why except that the bloodwork was encouraging, maybe. Or maybe I was just feeling better and projected it. Hospitals are such eerie places on the weekend - it feels rather like you've been abandoned in an old warehouse.

Social security called; Keir is applying for disability while he can't work. Lots of paperwork to do for many things. For me, school starts on Wednesday and that will be a challenge; focusing enough to do the work while in here. Thank you all for keeping me in one piece. Lots of people have offered and tried to help - this group was without a doubt the most helpful by far, and I am very, very grateful.