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
Those numbers are OUTRAGEOUSLY GOOD!!!!!!!! I cannot tell you how long it took me to get a hemoglobin like your Mum. In fact, I am not sure if it is as good as hers even now. Rejoice in the numbers, but remember, blood counts vary from day to day, so do not fret if you see one or two of the numbers stay stable or even go down. Right now, she has a normal WBC, ANC, Hb, and her platelets are just a HAIR below the normal range. These are absolutely wonderful.
FULL SPEED AHEAD.
Cliff
Fully agree with Zan. Go Mum Go.
Ed
BMB was today but still awaiting results. Blood counts are up more (aside Hb).
Hb 128
Platelets 167
WBC 6.5
ANC 3.9
I'll say it again, I covet your mums numbers. I am so glad she is recovering well and ready for induction round two.
Blessings,
Julie
Following my Mum's first induction her BMB showed she was in remission. She has since had her second induction treatment and has been at home again for about 4 weeks. Her counts are taking a little longer to recover this time, partly because she was allowed home with lower counts. We are just waiting on her platelets coming up, they are creeping slowly but still in the mid thirties, hopefully another week or so will do it and she can begin consolidation treatment.
Her eating was a big challenge again on induction two and due to her weight loss the plan is to have her on NG feeding tube throughout the consolidation treatment.
She has had a few infections throughout treatment but hey were cleared up successfully with antibiotics and I don't think were ever identified what they actually were.
Thanks again to everyone for their help, I will post another update when I can.
Jamie
What is your Mum's issue with eating? Is it a sore throat, nausea, vomiting or just no appetite? My only issues with NG feeding are the fact that there is something in her nose (a potential source of a bloody nose when her platelets fall) and that having a tube through the gastroesophageal junction actually decreases the functioning of the sphincter and predisposes to reflux and regurgitation. If she is feeling queasy, she may not tolerate the fluid in her stomach.
The positives are that she doesn't get fed by vein (port), which avoids a possible source of infection. I was given TPN (vein) during my post-transplant period and had no issues with it.
I am just sticking my nose in here, so feel free to disregard everything I just said. I am thrilled about your Mum's progress. Bravo.
Cliff
Such great news about your mum. My platelets flew up to 477 in one month after my induction. After that they took FOREVER, at least sixty days, to get in the 90s. Right now after four consolidations and being deemed in remission, my platelets have fallen from 74 to 55. My med team says if they fall one phone at my next labs on the tenth,I get another bmb.
I also received tpn nutrition via my Hickman port due to mouth sores and digestive issues. I had no issues with infections. I lived on applesauce and jello for a long time. I'm sure your med team is watching her closely.
Apologies for the delayed update again.
Cliff, the eating issues were nausea and vomiting which continued at home for weeks after her second induction.
However, a switch of antiemetic from Metoclopramide and Ondansetron to Cyclizine sorted it out. (unless it was a coincidence of timing)
This helped her massively and her appetite returned. Her platelets took a long time to recover to 100 (maybe 8 weeks total ) which was probably a blessing as it allowed her to gain a good bit of weight, get some strength back and avoid the feeding tube.
Since then she has been randomised to 1 consolidation course as she is on the AML17 trial in the UK. She has now completed the treatment and returned home on Tuesday this week. She found consolidation treatment much easier and maintained her appetite. It would seem likely that the daunorubicin in the two induction courses was giving her the most problems. Consolidation with cytarabine only was much easier on her.
We are just attending clinic now, mainly to keep an eye on the platelets as they are still quite low but the other counts are doing quite well. These are from yesterday.
Hb 106
Platelets 26
WBC 4.1
ANC 1.1
So for now everything is going well and hopefully the next BMB will confirm this. I'm still anxious about relapse and finding it difficult to celebrate the success to this point. I think sometimes you can have too much knowledge of AML but fortunately my Mum hasn't really done any research and seems very positive now. I'm sure this will help her and we will take things one day at a time.
Thanks again for all the support.
Jamie
So glad to hear your Mum made it through consolidation with less complications. Daunorubicin, aka red devil, is nasty. I'm glad I only had to deal with it once. But if having two rounds of Induction does the trick-outstanding. I completely agree that there is too much info on AML. I received the advice early from this group to stay away from research and statistics and only listen to my med team and this group. Probably the best advise ever. Please keep your mum from looking at any of that.
As out beloved resident Doc, Cliff, says put your blinders on and take one step at a time. This heinous disease is beatable-stay positive!
Praying for you and your Mum,
Julie
She is doing well and had her Hickman line finally removed about 10 days ago.
Counts are up with some back in the normal range.
Hb 110
WBC 7.0
ANC 4.0
Platelets 130
Still no mention of a BMB which I find a bit strange. My Mum doesn't want to ask as knowing its coming will make her anxious.
In general she is feeling so much better and hopefully will continue to improve.
Thanks again for all the support.
Jamie
She will be happy with that line is out, first time in a while she will be able to run the water over her head :)
Counts look great
xoxo
I am sorry I have not updated this thread in such a long time.
After 20 months in remission my Mum relapsed in September 2015. She was recommended 3 options. 1) High intensity chemo (probably FLAG-IDA), 2) Vidaza to give her a decent quality of life for 1-2 years or 3) Do nothing
Due to her age at 63 the Doctors did not see BMT as a good option for her and didn’t think she would make it through. They also advise that FLAG-IDA was high risk for her and there was a high chance it would kill her. She opted for Vidaza which I accepted but didn’t necessarily agree with as I think she is much stronger than the Doctors gave her credit for. She is not vocally strong when talking to the Doctors but internally she is a fighter for sure.
She completed cycle one of Vidaza and ended up in hospital with an unexplained fever. Cycle two was delayed a little and after that her ANC was rock bottom. She ended up back in hospital with another fever at the end of November but this time it was serious. She had an infection which caused appendicitis and two abscesses on her liver. She was treated with various IV antibiotics for 3 weeks or so but the abscesses did not resolve. Any kind of surgery was not possible due to her low platelets and zero ANC.
The week before Christmas the Doctor informed us there was nothing they could do and the abscess would cause her to die and there was no chance her blood counts could recover. He was ‘hopeful’ she would make it to Christmas. On her last blood test I noted her ANC had gone to 0.3 but was told it was not significant but they stopped blood tests (partly on her request) so it was never possible to see if a pattern emerged. She was very ill by this point and we decided to transfer her to hospice but we had to wait until 8th January. During her whole time in hospital she had hardly eaten anything and wasn’t drinking much either and towards the end of her hospital stay was nil by mouth.
We really weren’t sure if she would make it to the hospice but she did and once there she stopped all fluids, treatment, transfusions, blood tests and medication (except paracetamol for fevers and morphine for pain management). The hospice staff immediately tested her swallowing reflex and she was able to drink juice and eat ice lollies. It was the most horrendous time waiting for the inevitable. Some nights at home we were expecting the call.
We kept giving her juice (still no food) and after a couple of weeks my sister and I started to ask questions to ourselves. Things weren’t going as we were led to believe. We started to believe the thing that was going to kill her was starvation. We continually tried to get her to eat and one day she decided to try some soup. She managed and enjoyed the soup and over the days began gradually eating a little again. At this point my sister and I requested a meeting with the Doctor and expressed a number of doubts we had about her condition. He said he agreed and had been asking himself similar questions. My Mum agreed to a blood test and we discovered her WBC had returned to NORMAL. Her platelets were up a little to 48 and Hb was 85. Her CRP was still a bit high and the hospice arranged an ultrasound scan of her liver at the hospital. This showed on abscess had healed completely and the other reduced in size so she resumed oral antibiotics to address it.
She also received 3 units of blood and had a lot of physical rehabilitation to do but on the 1st March amazing everyone she returned home and eventually the other abscess healed too. Since then she has been building her strength up, receiving no treatment and her blood counts have stayed pretty good until 17th July. Her Hb dropped right down to 65 and WBC was 2.9 with ANC 1.3 (down from 2.3). 2 units of blood and two weeks later her Hb was 101, WBC up little to 3.1 and ANC 1.7. Platelets were at their highest since relapse at 123. However, on the 18th August her Hb was back down to 66 again, WBC 2.4, ANC 1.2 and platelets 103. Another 2 units of blood and 2 weeks later her Hb was 91, WBC 2.5, ANC still 1.2 and platelets 77.
So it looks like things are deteriorating again and I am a little confused why the Hb is so affected given that they have a much longer lifespan than white cells and platelets. The whole experience has made me question the diagnosis (again) and I am concerned the Doctors are missing something but up until now they have only been monitoring her blood counts and seemingly not doing much other investigation. I guess at some point she will be given a bone marrow biopsy to see what is happening. At the moment she is feeling pretty good and having no issues.
If things continue to decline then we are going to explore the possibility of a mini transplant. We were going to ask about this during the Vidaza treatment but never got the chance. I have been doing some more detailed research on the osteo-k as well and might see if she will consider trying that.
So it’s been a massive rollercoaster for us but it has been amazing to enjoy the last 6 months having my Mum home again.
I would also like to say a massive thanks to Cliff who has helped me loads over this time. The man is an absolute hero. Thanks Cliff!
I will try and post more updates, we are back at the clinic in 9 days for a blood test and probable blood transfusion.
Hope everyone is doing well.
Jamie