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
I know I am in NYC which is the mecca of this particular food, but all I could eat was Matzoh Ball soup. They call it the Jewish Penicillin. It has unleavened matzoh balls and very mild seasoning with dill. However, both of my inductions and my BMT I had a week where they gave me Nutrition IV form only. Do not be afraid of that if eating is an issue. Do they offer that to her? It was wonderous for me to NOT have to worry about gettting things down in the most trying time. My stomach lining was so torn apart in my first induction I couldn't imagine eating.
The other thing I could manage was room temperature Ensure milk shakes.
Ed
She is struggling with the Ensure milk shakes too.
They have mentioned feeding by IV or nasogastric tube but as a last resort. They are really keen to have her eating on her own (as am I) so I'm going to take in some more snack type foods tomorrow and hope we can make some progress.
Thanks again.
Jamie
You have to be very very careful with bacteria therefore you have to watch everything.
No fresh fruit or veges, freshly prepared and cooked well, no deli items or stuff from a kitchen you don't know how it was prepared.
I know its hard when everything tastes terrible, but tell her she has to keep her strength up and eat as much as she can..... have you even just tried toast with some butter on it as the bread would be good
xxx
I agree with everyone. I had no issues with eating until my conditioning and transplant. I had sores in my throat and just had no appetite. As Eddie said, do not be afraid of TPH feeding. I had to do that for a week, because I needed to keep my strength. Parenteral feeds are very carefully watched and are safe. If your mom is feeling nauseated, tube feeds would NOT be the way to go, because she might vomit or reflux those feeds, since the lower esophageal sphincter is breached by the tube. Encourage her to eat, but be open minded about a bit of IV assistance if she cannot.
Cliff
Aussiemum, it's just snacks like noodles, soups, sweets and biscuits which we checked with the nurses. We're trying anything to get the calories in and try to stimulate her appetite a little. She can manage a half slice of toast on the morning which is bette than nothing. I'll see if she might try toast more regularly.
Thanks again for the advice.
It the toast gets in, try adding some peanut butter and jelly. Great sources of protein, fat and carbohydrate. I was not implying that you should give up on getting her calories into her the usually way, but if she seems to not be getting much over several days, you should consider IV feeding to maintain her nutritional balance.
Cliff
Just my 2 cents.
Sending love
Ed
Sorry for the delayed update. I've been at the hospital a lot and their network blocks dailystrength for some reason.
My Mum started to eat a little better and was able to have the Ensure juice instead of the milk shake so she was able to avoid the tube feeding thankfully.
Her counts have now come up a bit and she was discharged today for a week or so, it will be good to have her at home over Christmas. :)
She has an outpatient appointment at clinic on Friday and then we'll be looking towards the second induction course.
Thanks for all the support. Hope everyone is doing well.
What a blessing to have your mum home for Christmas. I know I am enjoying this Christmas with a keener awareness of all my blessings, especially life. Why is your mum having a second induction?
Regardless. This is such good news. I am still wondering why a feeding tube would have been needed for TPN which is all done with an IV. Maybe it is different over there.
Happy holidays and so happy for you.
Ed
I'm not sure if the treatment is slightly different here in the UK or perhaps just slightly different in terminology. The induction phase is 2 courses and consolidation is also 2 courses on the standard treatment. However, on the current AML17 trial they are testing 1 Vs 2 consolidation treatments but that is something we have yet to consider, providing everything is going to plan.
Thanks Ed,
Apparently they didn't want to feed by IV because it restricts the Hickman line being used for other things. My Mum was still getting blood, platelets, antibiotics, potassium etc.
Hope everyone had a nice Christmas.
Hope you had a decent Christmas. It sounds as if things are going well. Continue to focus on nutrition and give her anything that she wants. All food has nutritional value and I wouldn't worry that much about quality. I am glad that the counts have come up and that your Mum was able to get home for Christmas.
Remind her that she and I are the same age and I got through it and am now healthy. Her appetite will come back big time and there is no reason to worry as long as she continues to eat. I would like to give some of my extra poundage to Ed at this point. I was 40 lbs less at my nadir and now I have regained my prodigious appetite.
Love to both of you,
Cliff
We had the outpatient appointment today and her numbers are looking good to start the second course.
Hb 142 (up from 126 four days ago)
Platelets 135 (up from 55 four days ago)
WBC 5.2 (up from 3.1 four days ago)
ANC 2.5 (up from 0.8 four days ago)
I know these numbers can be presented differently sometimes but that's how we are given them.
So it's BMB on Monday and all being well course two starts Tuesday.
Thanks again all.
The optimal number of consolidation rounds is up in the air, especially if a transplant is a given. I believe for people in my situation that were chemo only, three consolidation rounds is probably optimal, although I belie Julie had four. Everyone is different and I would never question the med teams -- they are all trying their best, and the success rate has increased tremendously over the past decade.
Take care -- dave
Those numbers look great! I'm at day 46 of my fourth consolidation treatment and I love my numbers to be that high. I'm waiting for my platelets to get to 50 so I can get my flu shot. I only had one induction but like Dave I have met many who needed two. So happy your mum isrecovering well and ready for the next step.
Praying all goes well,
Julie