Recent AML diagnosis on my Dad

Hi all. Bit of a long one so please bare with me. Last month when we had the last of the hot weather, my Dad began to feel unwell; lethargic, pale, breathlessness and a general feeling of being unwell, but unable to pin point an actual problem. We had arranged blood tests with the GP, however he took a turn for the worse and ended up needing an ambulance and a trip to A&E. I should mention he had a brain haemorrhage and a stroke 20 years ago, which affected his right side, he is able to walk with an aid but by no means perfect, however his right arm has no use at all. After a blood test at the hospital showed abnormal cells and suspected Acute myeloid leukaemia (AML), he was sent to UHCW where he had his bone marrow tested. The results came back somewhat obscure, so no definitive diagnosis, they were going down the route of atypical chronic myeloid leukemia. So we were in limbo really waiting for genetic testing and whatever else they do, he was recieving 2 units of blood per week, but he started bleeding quite alot from his mouth, so another trip to hospital for platelets and transfusions. We requested a meeting with the haematology Dr, who still had no new information to give us. Whilst in hospital he developed a cough and cold, but didn’t feel particularly unwell, we asked if a covid test had been done, however the nurse we spoke to said he had no symptoms? He came out the hospital Tuesday 10th October, and began to feel even worse, he could barely walk and was so tired and developed a terrible wheeze on his chest, he didn’t get out of bed, so I decided to do a covid test and as I presumed it came back positive. His consultant said he needs to be back in hospital so they can keep an eye on him as he will be immunocompromised. Eventually we got the info that it is also pneumonia, and he seems to be getting worse each day, even though he has been on oxygen, steroids, antibiotics, nebuliser and transfusions. However there doesn’t seem to be any improvement after a week of treatment, if anything he seems worse, his chest x ray from last Thursday and todays show no improvement, he has trouble talking and making any sense of what he’s saying, feels very tired and just terrible he says. We had the diagnosis finally come through today that it is now Acute myeloid leukaemia (AML). His white blood count has gone up to 80 and they are now going to try him on Hydroxycarbamide to try and lower his white blood cell. However they don’t know how he will react it to it, and have gave us a list of possible side effects and I know these probably wont all present if any of them do, but im worried that being so unwell at the minute and then possible side effects of diarrhoea, sickness and infection combined with his mobility issues will make him worse. Im just so lost and stuck, because my Dad has always been a laugh a minute kind of bloke even with what happened to him 20 years ago and now to see him so frail, scared and telling me he doesn’t want to die is killing me. Im lucky I have my husband (who went through this 14 years ago with his Dad and I can remember the sheer heartbreak he went through) but I just feel like im going crazy, if the phone rings i go in to panic mode. I feel like am i going to lose him to pneumonia or leukemia or both, I’ve asked the Drs but they cant seem to tell me any prognostic factors, because every individual is different, just taking it day by day at the minute. Thanks for reading, I just needed to write it all down and vent.


Im so glad you found the time to take a minute and write here. I have no words of wisdom but didn’t want to read and run. I read love, fear, stress and worry and i hope answers and improvements come soon. Keep talking to your dad, keep fighting with, and for, him, keep supporting him and take it best you can as it can. Our dads being ill is awful, no doubt, but we can show we love, support and will be there. That matters so much. Every good wish to you and your dad, stay in touch as you feel able

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Hi @Charleyfarley welcome to our forum and I am glad that writing your post and venting has helped in some small way.
@judesadventures has given you a brilliant response that I echo.
It must be so hard watching you dad so unwell, frail and scared, in limbo and that you are powerless to do anything to make it better.
Trust me you are not going crazy you are just such a caring offspring.
Also there is a lot of waiting around, not knowing, medical talk etc, we are all very special unique beings, with individual medical histories etc.
As for feeling lost you are now part of our forum family and we are here for you.
The Blood Cancer UK support line is also there for you if you would like to talk to someone on 0808 2080 888.
Yes, take it day by day, hour by hour whatever works best for you at the time and please do keep posting.
Be ever so kind to yourselves.

Oh @Charleyfarley, I’m so sorry you and your dad are having such an awful, scary time. As @judesadventures so rightly says, the most important thing you can do is show your love and support, which you are clearly doing in heaps. He’s very lucky to have such a wonderful daughter by his side.

As the consultants say, everyone responds to treatment differently. If you can, I shouldn’t worry too much about the possible side effects of his drugs, because the important thing is that he gets the treatment. He may not have any side effects at all, but if he does, the medics usually have mitigating medicines up their sleeves, particularly for sickness and diarrhoea (I had chemo for Acute myeloid leukaemia (AML) 3 years ago, and had anti-nausea and diarrhoea meds.)

If it helps, please stay in touch here. Even though I’ve had Acute myeloid leukaemia (AML) myself, I often think the relatives have the harder time, witnessing their loved one being so ill. So do make use of any tools that support you, like the Helpline here, or Macmillan, and us of course. The more supported you are, the more you can support your dad.

Take care. X

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Dear @Charleyfarley
We welcome you to the forum and thank you for bravely writing down all your concerns. It is understandable that you are concerned about your Dad and his health at the moment. It is very early days in terms of understanding his Acute myeloid leukaemia (AML) and the initial aim of the team will be to manage his high white cell count, keep him safe and manage his symptoms. You are quite right to take things day by day and do direct your questions to the treatment team.
I don’t want to bombard you with information at this point but do please ask if you would like us to send you resources to our information on Acute myeloid leukaemia (AML) and please do give us a call if you would like to talk things through: Blood cancer information and support by phone and email | Blood Cancer UK
Kind regards

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Thankyou for your kind replies. Unfortunately things haven’t gone the way we would of liked them to go. He has rapidly declined over the last few days and now cannot talk and unable to respond and there is nothing more the Drs can do apart from making him comfortable and help with pain medication and have placed him in pallative care. We are unsure of the time we have left with him, the Dr has told us hours to a couple of days, so I shall spend whatever precious time we have left with him talking to him sharing memories and letting him know we are there for him. Thankyou for the support, im so glad I found you, and I sincerely hope that whatever your going through whether you have cancer or a family member going through the same as many of us here, you have my love and thoughts. Much love xx


Oh @Charleyfarley, I’m so terribly sorry. Please don’t take time away from your dad to respond to this, but know that we’re here, thinking of you. I’m sure your dad will be able to sense that you’re there and hear what you say, and that will mean everything to him. X X

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@Charleyfarley it must be a really difficult time time for you and for you to process what is happening.
I cannot better @Fullofbeans response.
We are certainly here for you to say how it really is for you and to support you on here.
Your dad is so lucky to have you.
You are in our thoughts and sending you so much love and virtual hugs xxx

As others have said, there is nothing need to reply to this. You and others who love your dad are held up in my thoughts now and in the times ahead. I recently spent this kind of precious time with my lovely dad and walked with him till i could no more - it is an immense privilege to be able to do so and be able to give back at least a little. But goodness, is it hard. My every good wish for peace and moments of reflection in these coming days

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