Hello everyone,
My family is at the start of our journey with this. Last week my Dad was diagnosed with AML, he's 81 and they will be starting him on Venetoclax and Azacitidine next week if he can get a place in hospital to start treatment. They have told us they are hoping to give him two good years.
I am reaching out as I wanted to know if anyone has any useful advice both for my Dad, as the patient, and for his family supporting him. Perhaps you were in my situation and can share any wisdom you might have now you are further along in your journey with this. It's all very new and overwhelming and we want to support him, and each other, as best as we can.
Wishing everyone the best and thanking you very much in advance for any advice you can offer.
Best wishes,
Tilly
Hi Tilly75 and welcome to this corner of the Community although I am always sorry to see folks joining us and to hear about your dad’s diagnosis.
I am Mike and I keep an eye on our various Blood Cancer groups.
I don’t have Acute Myeloid Leukaemia (AML) but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell - Not Otherwise Specified NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.
Let’s look for group members to pick up on your post and get back to you. You can also click on the main ‘AML Group’ title and this will bring up all the group posts. Have a look at the posts and as always you can hit reply to any post and connect in with the wider group conversations.
Although the 2 links below are taken from a Lymphoma support site the information goes across blood cancer types.
Top tips for family, friends and carers
Top Tips for the day of your Chemotherapy
As for the practical and emotional challenges of supporting your dad and indeed yourself you may benefit from joining and posting in our general ……
Carers only (if you are their caregiver)
……. support groups where you will connect with a wide range of members navigating the exact same support challenges.
You may find it helpful to call the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support or just a listening ear.
For good information do check out Leukaemia Care UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 08088 010 444
Always around to help more or just to chat
Hi Tilly,
Just women how you and your dad are getting on? My mum is 85 and was diagnosed with AML in March. Same treatment plan. Mum has no other health conditions and was very fit for her age, the diagnosis was such a shock 
Hi Julie,
Thanks for getting in touch. 
I'm sorry to hear your mum also has AML. It's really tough, isn't it?
Dad started his azacitidine and venetoclax a month ago and should have been starting cycle 2 yesterday, but he's had such a terrible time. He was in hospital for the first week to start treatment, then was home for a week but was getting awful side effects and has now been back in hospital almost two weeks again. We're now waiting on the bone marrow results to see if the chemo has done enough to decide on the next steps.
How are things going your way? Like your mum, my Dad was also very fit and well until this came along just at the start of summer.
