Hello Tilly and thanks for your post,

I am sorry to hear about your dad. This must have been difficult to hear what the doctors had to say.

A lot will depend on the general fitness of your dad and the type of AML (Acute Myeloid Leukaemia) that your dad has. His doctors are in the best position to talk to you about what will happen next and how long he may go on without treatment (prognosis).

I am not sure whether you have had a discussion with your dad about where he would like to be. If he is up and about and relatively well he may want to be at home. Also if he has a lot of support from family and friends this may be the best option but it is completely up to him as to where he feels comfortable.

Your dad's GP manages his support at home. This will vary slightly depending on where he is living. It might be worth contacting his GP to see what help he may be able to access.

Further down the line depending on your dad's situation you may want to look at other options depending on how your dad is coping. You don't need to make any plans if he doesn't want to at this stage as there is a lot to take on board.

We do have a page on our website about choosing where to die.

Leukaemia Care has produced some information from a patient's perspective of dying with leukaemia which you may find helpful to look at.

Try and take one step at a time. Make sure that you get some support for yourself.

If you or your dad would like to talk any of this through with one of the helpline nurses then you are welcome to give us a ring.  The number to call is Freephone 0808 800 4040 and the lines are open from 9 am till 5 pm, Monday to Friday.

All the best,

Catherine

Hi Tilly, I'm sorry to hear this. My dad has been diagnosed, it's come as a complete shock as he's a fit strong man. He's 74. We've been told the treatment he can have tends to stop being effective after 18 months. Its also going to put him at high risk of infection. How was your dad on treatment? Time is so precious. Is the treatment worth it? 

Hello and thank you for for posting.

I am sorry to hear about your dad and his diagnosis of AML. I am responding to you as it has been a little while since Tilly posted.

How people get on with treatment is quite individual, but it is good for Dad's doctors to know you are concerned about his quality of life. They will be able to talk more about the benefits and risks of treatment so that he can make informed decisions about his care.

Blood Cancer UK also provides information and support if helpful at this time.

Take care and if you want to talk anything through with the nurses on the helpline the number is 0808 800 4040. Lines are open 9-5, mon-fri.

Sarah.

Hi Gemma12, I'm so sorry to hear about your dad's diagnosis. It was a real shock for us too so I understand exactly how you are feeling. My dad's blood tests started in July 24 and by September 24, he was diagnosed with AML. He started on azacitidine and venetoclax in late September. As he was so fit and well prior to diagnosis with no other health issues, they said they hoped to give him two good years. He started chemo and and seemed ok in his first week. He stayed in for a week or so came home and then was back in hospital with infections. We were very much in the dark at times as to what was going on, so push as much as you can with the medics to understand what's going on. They talk to their patient rather than the family. Tragically my Dad passed away just 7 weeks after his diagnosis in Oct 24. It was a complete shock to us and we hadn't been expecting it so soon.

Was the treatment worth it? In his case, it probably wasn't but he wanted to fight for a life he enjoyed living. He fought hard and so courageously and we couldn't be more proud of him. It was, however truly awful for him and us. It still is now a few months on since he passed. He passed away from neutropenic sepsis due to his AML. I'm sorry to share a sad story. From what I have read, he was particularly unlucky to not have had more time. While we know AML is a terminal diagnosis, many will get some time. I really hope that your dad can benefit from the treatment and you get to spend some time together. My only advice is to spend as much time with him as you can. Sending you lots of positive thoughts and strength. xx

Thank you so much for your reply and I'm sorry to hear your dad passed away so quickly.

I think we'll be reeling for a while. Thank you for your openness. As a family we're trying to be positive but we all know we have to be realistic too. It's just so sad, he's so strong and we can't quite believe he won't get better.

We will be taking your advice about speaking to his medical team and spending as much time with him as we can xx