Hi. I’ve just read through all of this thread as my Mum has recently been diagnosed with Acute myeloid leukaemia ('AML'). It has turned our world upside down. She’s 1 week into cycle 1 of chemo. I don’t know anything about her various levels or platelets - is this something her consultant should be sharing with us?
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Hi @Betty1 and welcome to the forum.
I was sorry to read about your Mum’s diagnosis with Acute myeloid leukaemia ('AML'). It’s never easy at this time.
I’ve always tracked my numbers or to be accurate my wife kept track of:
Haemoglobin (red cell count)
Platelets
Total White Count
Neutrophils
My primary diagnosis was Myelofibrosis which progressed to Acute myeloid leukaemia ('AML').
Haematology Teams are usually very happy to share your blood results and I’ve heard other forum members talk about an app.
I’m in Scotland and we don’t have results on an app as yet.
Rest assured your Haematology Team will be closely monitoring blood counts in case blood or platelet infusions are needed.
Take care and best wishes to you, your Mum and family.
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Hi. Thank you for replying, I really appreciate it. We haven’t been given any info on these statistics although I suspect that is because my parents haven’t asked. I maybe need to try and subtlety find this out or encourage them to ask (without interfering or causing anxiety).x
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Hi. I am so sorry to hear of your Mum’s diagnosis. It is such an awful shock and it is all still so fresh for you as well. I am happy to chat whenever you need to.
Did your Mum do her first week of Aza / Ven in hospital? I found they didn’t report bloods to us whilst she was in hospital, unless we asked of course. My Mum attends blood clinic once or twice a week at the hospital where they test her blood to check her levels and then the doctor looks at the results and assesses if she needs any infusions or not. We get a print out on a piece of paper but my parents usually get me to translate the results as it can be quite confusing to see all those numbers. Lots of people would prefer not to know any of the details about these things which is completely fine. The Drs will tell you if there is anything to worry about. I am just a bit obsessive about tracking these things as I thrive on knowledge.
Do you happen to know her mutations? I found that is one the most important details to know as Acute myeloid leukaemia ('AML') treatment/response to treatment can vary so much depending on the mutations. Sending love to you and your family.
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Thank you for replying. I asked my parents tonight if they know any of the readings and they said they didn’t. I mentioned to my mum that I would like to ask the doctor when I saw him (at the end of the cycle) but on reflection she may not want to know. She is in hospital for her first cycle of treatment (28 days). It’s a different combo of chemo than you mention which I guess is due to the mutations. I don’t know what they are either! I’m not very clued up on it all but also respect that my parents don’t want to know the detail, just press on with treatment.
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Hello there @Betty1, welcome to the forum at what must be a stressful time. I’m really sorry to read of your mum’s diagnosis with Acute myeloid leukaemia ('AML'). It’s really caring of you to join the forum to support her.
I see dear @DuncanB has offered his lived experiences of Acute myeloid leukaemia ('AML') and would urge you to have a read of more of his posts as Duncan has shared a lot of incredible, optimistic support around the forum. We all have such unique experiences of blood cancer, but it really helps to know something like Acute myeloid leukaemia ('AML') can be lived through like Duncan and the relatives of others with Acute myeloid leukaemia ('AML') like @Rosevin4 in this thread show.
In case you haven’t seen it, here is the Blood Cancer UK information about Acute myeloid leukaemia ('AML') for your reference: Acute myeloid leukaemia (AML) - what it is, symptoms, tests, treatment, prognosis and support. | Blood Cancer UK
If your mum doesn’t mind you knowing her blood cell numbers without her learning them too then that might be helpful for you to be able to discuss finer details with her specialist, she would presumably have to give permission first. Something to think about and discuss together.
You can also talk with the Blood Cancer UK nurses who are experts on all this and can help you formulate what you’d like to know and who to ask. Their free number is 0808 2080 888 and they’ll be back Monday morning.
It’s great to read your mum is having treatment and is safe in hospital. She’ll have experts around her knowing exactly what her various test results are showing, keeping a close eye on any changes, 24 hours a day.
Perhaps if you feel your own self-care might benefit right now, I’m sure you’ve heard of Maggie’s and there may be one near you to pop into: https://www.maggies.org
If you’d like to find others around the forum sharing about Acute myeloid leukaemia ('AML') then check using the search box at the top.
Hope that helps a little @Betty1, do please keep us posted about how you and your mum get on.
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Hello @Betty1
Thank you for your post and welcome to our forum.
We are so sorry to hear about your mum’s diagnosis of Acute myeloid leukaemia ('AML'). We can imagine this has come as a huge shock and it is an understandably overwhelming time for both the person diagnosed and those close to them, especially during the first few weeks of treatment.
Please know that you are not alone and if you would like to talk through any of this, you can contact one of our Support Services nurses on 0808 2080 888 or by email at support@bloodcancer.org.uk. We’re here to listen and support you.
The haematology team will often discuss blood results, including things such as blood counts and platelet levels, when they are talking through treatment plans, monitoring and any changes in care. Different teams and hospitals may share information in slightly different ways, so if there is anything you’re unsure about, do ask the consultant or clinical nurse specialist to explain her results and what they mean.
We have pages on our website about Acute myeloid leukaemia ('AML') that you may find helpful which includes information on diagnosis, symptoms and tests, treatment, and practical support - Acute myeloid leukaemia (AML) - what it is, symptoms, tests, treatment, prognosis and support. | Blood Cancer UK We also have an AML booklet, which is free to download or order as a printed copy.
In case it is useful, we also have a page on Looking after yourself when someone you love has blood cancer | Blood Cancer UK as being close to someone with blood cancer can have a big impact on your own well-being so it’s also important to be kind to yourself too.
We do hope this is helpful, take care & warm wishes,
Emma (support services nurse)
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Hi all. Just to let you know I gave birth to baby Milo on 27th July at 34 weeks + 2 days. Despite being 6 weeks early he somehow weighed 7lbs 1oz! We are still in NICU but he is doing really well, he just has to learn to feed.
My Mum is currently on her 3rd cycle, she is feeling very tired as she always feels fatigued for the first half of it and then starts to feel okay again. Her neutrophils and platelets seem to take their time to recover between cycles but the venetoclax will only be 21 days instead of 28 this time so hopefully that helps. Hope everyone in this thread is doing well 
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Oh @Rosevin4 a great big congratulations on the birth of Milo and 7lbs 1oz is a good weight. You always quite rightly tell us about your mum and send us all best wishes but how are you doing medically, emotionally, physically and practically,
Really look after yourself and be ever so kind to yourself xxxxx
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Ah massive congratulations!! I am so pleased Milo is doing well, and was a good weight! I’m so happy for you 
sending lots of love!!!
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Congratulations @Rosevin4
Wonderful news on your new arrival.
Thanks also for the update on your Mum.
If memory serves me correctly when I went on to the Azacitidine and Venetoclax combination I did have some instances where time between cycles increased.
I’m sure having a new addition to the family will give everyone a lift 
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That’s lovely news to hear and what a good weight. Big congratulations to you.
You must be full of a range of emotions. How are you doing? X
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Awwww welcome little Milo
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A huuuuuuuuge congratulations from me and the Support Services team, @Rosevin4! And welcome, little Milo!
How are you all doing? And how is your Mum? Nopressure to answer any time soon, of course 
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How are you getting on lovely? I keep thinking about you! I hope all is ok.
Just an update on my dad for anyone on the tread. He was doing well out of hospital for a whole month but has been back in from Monday with neutropenic sepsis. He does seem to be a bit better today tho. Third chemo round is delayed. He will have a BMB beginning of Sept. We found out his mutations, amongst other he does have the FLT3. Consultant did say there is a targeted treatment for that but in our trust won’t be given until he has been on aza/ven for 6 months. Not 100% sure on that tho. So he lives on for now. Poor man, it’s been brutal. He is made of strong stuff bless him.
sending love to all x
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Hi all! Thanks SO much for all your well wishes, baby Milo is home from NICU now. He was only in 13 days in the end and he is thriving. My mood has been up and down with all the hormones and trying to process everything that has happened. I have felt SO much better since coming home though, I ended up spending almost 5 weeks as an inpatient since my waters broke at the beginning of July, and it was really affecting me mentally.
@Help so great to hear from you and thanks for updating us about your Dad. I am glad that you managed to get answers in regards to his mutations and it is great about the targeted treatment, although a bit confusing as to why he has to be on Aza Ven for 6 months first. Must have been nice to have a good stretch of time with him out of hospital, so annoying that he is back in. Does he do the injections to boost his neutrophils or do they want the results of his BMB back before they start that?
My Mum finished cycle 3 today - it was her first cycle of only doing 14 days of Ven. The first two cycles were 28 days of Ven. All her bloods are very low as they didn’t wait for them to recover before starting this cycle. I think there will be more of a break before next cycle now, her bone marrow has been through a lot! She hasn’t had any platelets since before treatment began but she will probably need some when she goes back in for a blood test on Friday.
Sending lots of love x
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So pleased to hear you are both home and doing well 5 weeks is such a long time, especially with all the added stress and already another little one too. You have been through so much, I hope you are having some lovely times at home together 
14 days on ven sounds great, and gives a longer time to recover. I am hopeful they may amend my dads to 21 at least. Maybe after the biopsy.
Xx
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