Just diagnosed with AML

After a rollercoaster of a few days from a gp appointment, blood tests, next day appointment in haematology, more blood tests and consultant telling me he was 99% sure I had acute leukemia, today I was diagnosed with Acute myeloid leukemia (Acute myeloid leukaemia (AML)). My only symptoms were unexplained bruising and fatigue, consultant reckons I have probably had Acute myeloid leukaemia (AML) for a few months. Treatment plan is to be admitted, next on list when bed becomes available but sooner if I become unwell, have heart scan, Picc line put in then 10 days of chemo drugs D and A, though second one doesn’t begin with A just referred to as that. Hopefully if all goes to plan rest of the month in hospital to recover, I don’t know what the gene mutation is yet. Iam so scared and worried about the cancer, my family, bills, Iam stuck in a nightmare.


Hi @Caroline30,
I am so very sorry to hear of your diagnosis. You must all be in lots of shock and trying to process all the information you have already been given.
We understand that hearing you have a blood cancer will feel utterly all consuming and overwhelming with so many questions yet to be answered. We will do our very best to help support you in any way we can Caroline so do know that if you need to talk things through with us, our support service team is only ever a phone call away- Blood cancer information and support by phone and email | Blood Cancer UK.

It sounds like everything will be happening quite quickly here on in for you, which is very typical of Acute myeloid leukaemia (AML). In case it is helpful in any way I have linked here to our webpage information on Acute myeloid leukaemia (AML) as it talks through treatments and what to expect- Acute myeloid leukaemia (AML) - what is it, symptoms, treatment and prognosis | Blood Cancer UK.

When admitted, as a starting point, you can ask your nursing team for support with financial entitlement. They may be able to help you access a welfare rights advisor which will support your family in accessing grants and benefits in order to help ease some of the financial pressures.
It is also important Caroline that you & your family are given contact details of a nurse specialist or key worker who you can contact with any questions or concerns you have whilst at home. Your haematology team should also provide you with an out of hours contact helpline.

Again if it would feel easier to talk things through, we are very much here for you.

Take care and keep in touch, Lauran

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Hi @Caroline30 welcome to our forum all part of the whirlwind you seem to have been on.
I would say it does not give you much time to process the shock and what is happening.
@LauranBloodCancerUK has given you a brilliant response.
I think the unknown is so scary and worrying and as you say a nightmare.
For me it was the cancer word.
When I was diagnosed I came home and wrote my will and funeral music and that was 20 yrs ago.
I also worried about the practicalities and my family, work and bills but things did work themselves out somehow. I had to learn to ask for and accept help.
Really give yourself time to take it all in and really be kind to yourself.
Please do keep posting when you can, we on here understand what you are going through

Hello Caroline, I can empathise with you. I had a routine blood test done on a Friday, and got a phone call followed by admission on the Monday - no time to process the diagnosis nor take in what was going to happen. Once I was settled in hospital things calmed down a lot. The consultant haematologist and other medical staff were very good and talked through everything, and the nurses were brilliant. The worst bit was the wait for the genetics to come through - the bone marrow biopsy quickly confirmed acute myeloid leukaemia, but the genetics was needed to determine what happened next. In my case I had two courses of chemo to induce total remission, and had to stay in hospital in an isolation room for that time because of infection risk, although I felt perfectly well. I was accepted for donor stem cell transplant and luckily eventually they found a fully matched donor. My transplant went well, and I am now, just over four years later, completely well, healthy, walking 5-6 miles a day, enjoying life and completely disease-free. Obviously everybody has different treatments and different experiences, and I had a few complications in the first year, but hopefully others here will be able to reassure you that there is life after a leukaemia diagnosis! It is all incredibly confusing and scary at the beginning, but you’ll soon become an expert patient :slight_smile: Good luck, and keep posting, there are lots of people here who’ve gone through similar diagnoses. You’ll get through it :smiling_face_with_three_hearts:


Erica I don’t know if you can help. I’ve just managed to find my way back onto the forum, having been active a while ago, and then all my emails relating to the forum abruptly stopped. I have no idea why! Now that I’m back I’d like to make sure that I can keep in touch with the forum. Maybe you can pass this onto the right person please. Thanks, Diana

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Hi @diana I am so sorry you are having this problem.
I will refer your post to Blood Cancer UK, I can’t do anything technical!! @BloodCancerUK-SupportTeam
It’s really good to have you back, look after yourself

Hey there @Diana, sorry to jump in but I similarly didn’t get notified of emails from here. I hope you don’t mind but I’ve attached screen shots from my laptop of how to change the email notifications to your liking…

Click on your little round logo in the top right of the screen, then click on Profile in the bottom right of the menu that pops up (the grey little head and shoulders logo)

Then click on Preferences to the right of the menu that pops up, and then Emails, and you should get a screen where you can change how you receive email notifications


Hello everyone. I was admitted last night and now the not so fun bit begins. Spoken with Haematology doctor, plan for today is Picc line, heart scan, which Iam fine with, and bone marrow biopsy this really scares me.
He mentioned such a lot at once like stem cell transplant, bone marrow transplant, clinical trial, my head can’t processs it. I have never felt so alone and crying like a baby right now.


Oh @Caroline30 I’m so sorry you’re going through this! What an overwhelming situation for you. Please know we’re here (free) on 0808 2080 888 and support@bloodcancer.org.uk if there’s any info we can send you, for example around stem cell transplants etc, or if you just want to talk things through with one of our nurses. We’re open until 4pm today. We’re here if there’s anything we can do to support you, at any point. We wish you all the very best and have everything crossed things go as well and smoothly as possible for you.


Hi @diana, I’ve messaged you to see how I might be able to help!


Hi @Caroline30 so sorry you are going through this. My husband was diagnosed in October at 32 and it was a huge shock for us.

Sending you best wishes and just want you to know that the shock does settle down and you can do this. I have found posting on here incredibly helpful and the advice and support has been so important to us. You might be able to find a similar thread of mine where I have expressed all of the same worries.

One thing at a time. It is an incredibly overwhelming piece of news to be given and it is a marathon , not a sprint. Try to break down the tasks or thoughts into manageable chunks and keep posting. If there is anything we can do, or if you have any questions, please do post.


Hi @Caroline30 gosh, I really feel for you, I don’t think medical people sometimes realise how difficult it is for us to take in and understand medical speak.
I am useless at taking in more than a few, things at the best of times.
If you are in hospital I expect you will be interacting with nurses so please do ask them any fears, questions and practicalities you might have.
I find I just need to break things down into manageable chunks, my mind likes to work like a washing machine, whizzing around out of control and not processing it.
If I go into hospital I also feel so scared and lonely and cry like a baby, it is a horrible feeling isn’t it.
Sending you a great big virtual hug and when you can please do keep posting when you can.

Hi Caroline, I feel so sorry for you. It is all overwhelming at first, but give it a couple of months and you’ll feel like a pro! Toadmum offers vital advice - this is not a sprint, definitely a marathon. Things will start to get clearer as you work through the process, you really are not expected to take in everything at once. Don’t be scared by the bone marrow biopsy (you’ll be having quite a few over the next year) - it’s not the most pleasant procedure, but nor is it something to be terrified by - a bit like going to the dentist for a filling - not what you’d choose to do, but as long as the doctor gives you time and a decent amount of local anaesthetic it’s not awful. Don’t worry about the transplant yet, you’ll probably be having some chemo once they’ve looked at the bone marrow, and then they’ll be able to discuss the next steps with you. Try not to panic about things that aren’t happening yet, just take it a day at a time. If you’re not sure about anything make sure you ask the doctors to explain it until you understand. The haematology/ oncology nurses are usually brilliant too. You didn’t say which centre you’re being treated at, but I should think that between us all here we’ve got experience of most UK centres!
I promise that although it is all terribly strange and frightening right now, it does get better. Hang on in there :hugs:


Hello everyone. I have been poked and prodded a lot today, my Picc line is in and I didnt feel a thing, Iam giving myself a gold star for the bone marrow biopsy only discomfort was when the local anesthetic went into my muscle, luckily they didnt have to go in deep for the sample so I never felt anything else yay I did it! I have had a platelets transfusion ready to start the chemo in the morning. Gene mutation results due back tomorrow, can anyone help me have a better understanding of this please?


Wow, what a day you have had, you have done brilliantly, yay, you did it.
I expect you are absolutely worn out so much has happened to you today.
I think your gene mutation questions are best asked of your medical team.
Please do keep posting how you are getting on and perhaps try and take it a day at a time and be ever so kind to yourself

Your gene mutation results will be explained by your consultant / clinical nurse specialist.

Basically, even within Acute myeloid leukaemia (AML), there are so many different mutations that people can have. The mutations are really important because they will enable your care team to create a tailored treatment plan.

There are common mutations and less common. Low risk and high risk. Some might mean that straight away your care team might be able to tell that you are lower risk and could only need chemo. My husband has higher risk mutations (2 mutations). One went straight after chemo cycle 1 but he was told more or less straight away that he’d need a transplant.

I would say try not to worry about these too much. It is easy to become obsessed over them and actually there is lots they still don’t know about mutations. We have a friend who had Acute myeloid leukaemia (AML) and was treated 10 years ago who never knew his mutations. The good news is that for some mutations there are already targeted chemotherapy and treatment drugs, with more being developed all the time.

To summarise, your team will explain once they have the details but don’t stress. It doesn’t change your initial treatment plan and just allows them to have a more considered view of how your Acute myeloid leukaemia (AML) might respond to enable them to better plan.

Take care of yourself. It sounds like you did amazingly! I always think platelets look like a bag of chicken stock when my husband has them. He must have had so many since October, so grateful to all those people who take time to donate so that he can feel well still.

Let us know how you get on today. Will be thinking of you! X


Hi @Caroline30,
It sounds you have a lot happening right now and I hope you are doing okay?

It’s possible by now that you have spoken with your consultant about gene mutation results. However in case our information is helpful in any way I wanted to link to our webpage which talks about the variation of gene mutations ( 3rd of way down the page)- Acute myeloid leukaemia (AML) prognosis | Blood Cancer UK.

Always just know that we are all here for you and sending you lots of strength.


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Hi everyone. The plan was to start my treatment today now all the genetics and results are back, but one of the chemo drugs keeps getting tweaked for something or other so it will be tomorrow. I have got to be isolated in my hospital room for the whole time which could be up to six weeks, and I have been told I will lose my hair in three weeks though Iam not at all worried about that, some of the other possible side effects scares me, but Iam just going to have to deal with them if and when they happen. Financially the burden as been lifted for now, after speaking with the haematology clinical nurse specialist so thats one less thing to to have to worry about. My focus is to get through tomorrow.


Hi @Caroline30 Please do let us know how tomorrow goes when you can.
I will have my fingers and toes crossed for you xx

Hi everyone. An update on my first round of chemo. I had four drugs, one of which was very red, one going through for an hour, one for two hours and two quick bolus drugs 12 hours apart.
An hour after they were all finished I suddenly went cold which passed, then uncontrollably shaking, nauseous then one bout of sickness, then extremely tired. Such a lot in one day so I guess my body had to react in some way. Today I feel fine apart from a slight headache, and only have the two quick bolus ones.