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.
Hi all,
Another new member looking for some help regarding my Mum please. I have read a lot of the other posts here but just want to share my Mum's situation to see if anyone can offer any advice.
My Mum is 61 and was diagnosed with AML (M2) last week on 6th November. Six weeks previous to this she was admitted to hospital with low red and white blood counts. Having carried out a blood smear the haematologist diagnosed Pernicious Anaemia to be treated with an initial blood transfusion and B12 injections. After a few weeks we unfortunately received the news that her bloods were not improving as expected and she would need to have a bone marrow biopsy.
This was carried out and a few days later we were told that the aspirate had failed to provide the required information, we were not informed why. The following day she also had a blood transfusion to boost her haemoglobin levels. She then had another biopsy the following week and about a week later was diagnosed with AML from the aspirate results. The trephine biopsy results have not come back but we are told will not make much difference.
Unfortunately I do not know the percentage of blasts present in the bone marrow yet but there were none detected in the blood and that was why it was originally missed. The haematologist thinks it is "likely" to have transformed from MDS but did not give a definite answer on this.
My Mum is due to begin chemotherapy this Thursday after an 8 day wait and this time has been very distressing for her, I think primarily due to anxiety. She was extremely anxious and not eating well for the 3 weeks awaiting BMB's and diagnosis, and now since diagnosis she has been even worse. We are trying to get her to eat as best she can but she feels extremely sick and in particular is nauseated by food smells. Obviously we are keen to get her strength up to begin chemo.
By the way the only symptom my Mum has really had was tiredness and being short of breath on physical exertion. We don't think there is any specific gene mutation or we certainly haven't been advised of it yet.
It is quite difficult for me to get information because my Mum doesn't want to know too much and I think that might be for the best. But I need to learn all I can so we can help her make decisions. I am expecting to get more information at the hospital on Thursday but I just wondered if anyone had any experience they could speak of in relation to these questions.
1) Do you think there is any advantage in having no blast cells in the blood?
2) Is it common for WBC to be low rather than high?
3) My Mum's diagnosis was 2 weeks after her 2 unit blood transfusion and I'm 99% certain her haemoglobin level measured that day had not dropped. Is this significant?
3) Given that there are no blast cells in the blood I am wondering if we should be getting a second opinion? I do feel concerned about time though, and think we need to press on with the suggested treatment. Incidentally treatment is at a different hospital than the clinic where it was diagnosed and I think will be a different doctor so is he likely to be having a fresh review of the records?
I think the main thing I need to know at the moment is her percentage of blasts in the bone marrow but would appreciate if anyone has any comments on the above.
Thanks for any help.
Jamie
Another new member looking for some help regarding my Mum please. I have read a lot of the other posts here but just want to share my Mum's situation to see if anyone can offer any advice.
My Mum is 61 and was diagnosed with AML (M2) last week on 6th November. Six weeks previous to this she was admitted to hospital with low red and white blood counts. Having carried out a blood smear the haematologist diagnosed Pernicious Anaemia to be treated with an initial blood transfusion and B12 injections. After a few weeks we unfortunately received the news that her bloods were not improving as expected and she would need to have a bone marrow biopsy.
This was carried out and a few days later we were told that the aspirate had failed to provide the required information, we were not informed why. The following day she also had a blood transfusion to boost her haemoglobin levels. She then had another biopsy the following week and about a week later was diagnosed with AML from the aspirate results. The trephine biopsy results have not come back but we are told will not make much difference.
Unfortunately I do not know the percentage of blasts present in the bone marrow yet but there were none detected in the blood and that was why it was originally missed. The haematologist thinks it is "likely" to have transformed from MDS but did not give a definite answer on this.
My Mum is due to begin chemotherapy this Thursday after an 8 day wait and this time has been very distressing for her, I think primarily due to anxiety. She was extremely anxious and not eating well for the 3 weeks awaiting BMB's and diagnosis, and now since diagnosis she has been even worse. We are trying to get her to eat as best she can but she feels extremely sick and in particular is nauseated by food smells. Obviously we are keen to get her strength up to begin chemo.
By the way the only symptom my Mum has really had was tiredness and being short of breath on physical exertion. We don't think there is any specific gene mutation or we certainly haven't been advised of it yet.
It is quite difficult for me to get information because my Mum doesn't want to know too much and I think that might be for the best. But I need to learn all I can so we can help her make decisions. I am expecting to get more information at the hospital on Thursday but I just wondered if anyone had any experience they could speak of in relation to these questions.
1) Do you think there is any advantage in having no blast cells in the blood?
2) Is it common for WBC to be low rather than high?
3) My Mum's diagnosis was 2 weeks after her 2 unit blood transfusion and I'm 99% certain her haemoglobin level measured that day had not dropped. Is this significant?
3) Given that there are no blast cells in the blood I am wondering if we should be getting a second opinion? I do feel concerned about time though, and think we need to press on with the suggested treatment. Incidentally treatment is at a different hospital than the clinic where it was diagnosed and I think will be a different doctor so is he likely to be having a fresh review of the records?
I think the main thing I need to know at the moment is her percentage of blasts in the bone marrow but would appreciate if anyone has any comments on the above.
Thanks for any help.
Jamie
Welcome to the group, although I am sorry you have to be here. Everyone here is very friendly and helpful and will have great insight to share. I will try my best to answer some of the questions you have.
1) I don't know if there is any significance to having no blasts in the blood. I would think the more blasts in the blood, the more symptoms one might have, but that is just my thinking.
2) As for the WBC being low... My dad's WBC was low when he was diagnosed as well. His doctor said that he likely had MDS prior to his AML diagnosis. She said that most patients with MDS prior present their AML with low WBC whereas those who did not have MDS prior have higher WBC.
3) I suppose a second opinion never hurts, but I would think a doctor better be pretty darn sure to give an AML diagnosis. Unfortunately, you can't go by the peripheral blood when making a diagnosis. The bone marrow biopsy is the definitive test.
As for the percentage of blasts in the blood... don't focus too much on the numbers. From what I have learned, the percentage of blasts doesn't change prognosis. AML is AML, whether there are 90% blasts or 25% blasts. I know of people who were diagnosed at 89% blasts and they are in remission now. There are some who had very little blasts at diagnosis who have had a different outcome. Every person is different. Once that chemo starts moving through the veins, it will gobble up all of those cells!
Talk to your mom's doctors and gather as much information as you can. I know this is a scary time right now, but this disease can be defeated! You'll meet warriors on this board who are surviving and thriving everyday.
Wishing your mom the best. Please remember to take care of yourself, too. Your mom needs you to be strong with her. :)
Twobiyz summed it up very well. I have 55% blasts at first diagnosis and white count of 44. I had a smear with no blasts at my relapse diagnosis on the blood smear 8 months later. One can never tell. 61 is YOUNG these days for AML and so many people are thriving. FYI i had very POOR genetic mutations and am still going strong two years later.
Be calm. We are all here for you and your mom. Really if she is handy on a computer this site is a godsend. Dave will chime in and he is a 4 year survivor CHEMO only MDS/AML and a bunch more are on here as well. It's no picnic but it is so beatable. We are all living proof.
Where are you being treated? From Mum I am guessing across the pond of down under. I cant say a second opinion ever hurts, but waiting is never good with AML either.
Ed
Your Mum is lucky to have you. It was my son who did my detective work and ended up saving my life. I do not know what options that you have but I would encourage you to get as broad a group of hematologists to look at the BMB results. I would not just trust what I am hearing -- it just does not ring well. BUT -- while I cannot answer your questions because they are a bit too technical/medical for me, I can say that these are EXCELLENT questions that YOU (not your Mum) need to pose. I can recall when I was in her situation and I could not understand a thing anyone was saying. Make notes then come back and re-ask us and we will explain the lingo a bit more.
Blasts were not detected in the blood? perhaps they were not doing that test? 5% blasts are normal -- they should have found them. Blasts are baby blood cells ... they are necessary or there will not be anything to grow up. But when you have significantly more than 5% up to 25% they general call that MDS, and if over 30%, that is usually called AML. MDS means that the blood cells are not shaped right, so that is something that can be seen in the blood itself under a microscope usually by a hematologist. Please ask the people who did the BMB what the blast % was -- they are the ones that should know, and as TwoBoyz said -- I was told as she was that the only definitive DX for AML can come from a BMB.
As far as prognosis -- I was older than your Mom when I was DXed -- am 70 toward the end of this month, and at that time will be a 4 year survivor, so age should not be a factor if she is in good health. Since they have already recommended chemo, then as long as it IS AML (which I would get verified), then that is the standard treatment and there are probably no major decisions to make at this time. But just for your own peace of mind and long term good decisions, the more hematologists/oncologists you can get involved on the team the better. Most doctors prefer to have alternative opinions because it sort of gets them off the hook.
Do not neglect the power of prayer -- we will be praying for you, your Mum and your whole family. Please come back with more questions and please keep us up on how things are going. Thanks -- dave
Dave, I am actually just over half way through your 'No Visitors Please' story you linked to elsewhere and am sorry for the tough time you had to go through but I'm glad things are going well for you. Thanks a lot for sharing.
No blasts were detected in the blood for my Mum. As far as I know a blood smear was carried out at least twice and I did confirm it with the haematologist but he wasn't really able to offer any explanation, only to say that the blasts are present in the bone marrow and hadn't spilled out in to the blood. Has this happened with anyone else? Unfortunately I don't know the percentage in the bone marrow but will try and find out. The diagnosis was made from the bone marrow aspiration and the bone biopsy hasn't come back yet.
I also remember at one point (before diagnosis) being told that the blood cells were not abnormal in shape or anything, the counts were just very low.
I will try and speak to the clinic tomorrow but I am not sure if they will be able to tell me anything without my Mum's permission. I have a strong feeling she will reject the idea of a second opinion as I think she has accepted the diagnosis. She trusts in the doctor but I prefer to question everything.
I will let you know if I can get more information.
Thanks again to all of you for your help.
Jamie
Prayers to your Mum.
Ed
I actually feel a little embarrassed in that I never knew my blast %, either in the marrow or the blood, my WBC count when diagnosed or any of the other numbers we throw around here all the time. I guess they would have told me if I asked but they never offered it and I frankly didn't know to what to ask. My center is like that - if I can't do anything about it then I don't need to know.
Anyway, I'm also interested in the answers from someone who actually knows. And more importantly, how Jamie's mom (sorry, I can't bring myself to say "mum") is coming along. Please let us know. Good luck.
Thanks for the replies.
I spoke to the Doctor (a different one) and he confirmed that there were no blast cells in the blood. He said that this can sometimes be how AML is with blast cells in the bone marrow only. He didn't have a definite percentage of blast cells due to the aspiration sample not being optimal but they have put it at around 30%.
My Mum has now been in hospital for 6 days and they will be starting chemotherapy tomorrow. She's had a blood transfusion, some platelets and a Hickman line inserted. She has also entered the AML17 clinical trial here in the UK which is mainly testing two different induction doses and 1 Vs 2 consolidation courses.
For now we are hoping that the chemotherapy will go well and we can get a remission.
I did have one other question please. My Mum currently has WBC at 1.7 and Neutrophils 0.1 even before treatment has started. Has anyone had similar levels?
Hope everyone is doing well.
Thanks.
Jamie
I just finished my final consolidation treatment for a total of four. I had acbc drawn on Feb 28 that showed an anc or neutrophil of .2. I was not dxd until Mar 22 and started induction chemo the next day. I believe most aml patience start induction chemo with pretty low platelets, rbc and anc counts. I am nadiring at home right now and expect my anc to plummet to 0 by day 10 and stay there for about 15 days. I give myself neupagen shots daily that help nudge my anc up.
Prayers for your mums induction to go smoothly.
Julie
I just went back and had a look at my mums level's (she was 65years old when diagnosed this year in April)
When she started Chemo her WBC was 0.80 and her Neutrophils was 0.19.
We received a printout of her blood work every day, we understood not to worry about the figures as when chemo starts this will drop to Zero and the neutrophils will not even register. This is the important time when she is not exposed to any infection at all.
Limit vistors, don't let her touch anything like lift buttons, money, eat a low bacteria diet.
Then about day 20ish the figures should start to improve.
Good Luck let us know if you have any questions
Jamie -- sorry I cannot help with the numbers, but I feel that they would not be getting her into chemo if they did not feel that she could tolerate it. You know the numbers are about to get clobbered by the chemo, right? That is what it does ... kills the good ones with the bad. If they are lucky enough to nail the stem cells that are mutated, that is effectively a cure. However, the chemo is mainly going after the blasts and not stem cells because if you kill all the stem cells there is no chance for survival -- they are the things that produce the blood, and as the bible says -- the life is in the blood.
As for the 30% -- that would be borderline of AML and MDS. But it really does not matter. As I understand it, with blasts that high the treatment would be the same. But that is not as high as some of us were -- and 30% is probably as good an AML starting point as you can get, so I would expect that is a positive. I am glad she got a port (hickman -- there are several different kinds) -- I started with a hickman and liked it much more than the PICC. No matter, it makes life a whole lot more bearable ... I did my first round of chemo without a port ... let's just not go into that ... its no wonder I wasn't keeping track of anything. Just glad she got one -- it will make her life a whole lot easier.
Please keep us up on how things go -- I guess they are only going to do either one or two consolidation rounds ... perhaps with what they are doing that is sufficient. I had three. Julie had four -- not many of the rest of us had four. I believe three is normal, but I would think it depends on the condition of the patient and perhaps what all is in the chemo.
Julie -- are you still in the hospital -- you should be getting done for the Holidays, right? I had my final round in early December, so all of this is making me a bit nostalgic.
Take care all -- dave
I was paroled on Sunday, praise God. I am officially done with chemo and I believe God has healed me. I am nadiring at home so because it is cold and flu season I am being uber careful. For me that is extreme. My poor family it's on lock down with extreme cleaning rituals.
Thanks for caring and passing for me as always,
Julie
My Mum finished her 10 days of chemo 5 days ago and is doing relatively well but has had quite a few side effects which are being managed.
She is still feeling extremely nauseous and is really struggling with eating despite various anti sickness drugs. Does anyone have any suggestions for something that might be easier to snack on?
Thanks again!