AML Diagnosis 84 year old dad

Hi Grace1808  and welcome to this corner of the Community although I am always sorry to hear about your dad. 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……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell was then presenting so although my Blood Cancer ‘type’ is different I most definitely appreciate the challenges of this journey rather well.

Let’s look for any group member to pick up on your post and get back to you.

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

Thanks Mike!

Hi Grace1808,

My dad was also diagnosed last week with AML. He is 86 and before feeling unwell about 5 or 6 weeks ago, was completely independent. He also has been offered non-intensive chemo (Azacitidine and Venetoclax). He has not made a decision yet about whether to take the treatment. We are due to have an appointment soon to discuss this. With the chemo, he has to be in hospital of 7 days, something he does not like the idea of. I have found it very difficult to find up to date information about prognosis/benefits of treatment/versus non treatment. I would be really interested to know whether you have been found/given information on this. Regarding chemo and keeping safe, there is some information on the Blood Cancer UK website. This is a really useful website. My dad was given a large booklet about AML from Blood Cancer UK. I wish I could give you a positive story but I am walking with you and hope that your dad responds well to the treatment, which I hope my dad will agree to. I have put below the linkj to the page on Blood Cancer UK which I think you will find useful. Regards 

bloodcancer.org.uk/.../

Hello Jacqui, thanks so much for taking the time to reply. I am so sorry to hear you are going through the same process. It is very tough. We had our appointment yesterday, and Dad was also offered both the same treatments. We are going to start initially with just the Azacitidine, as we were told that it is milder and the Venet can have more severe side effects. We are doing Wed-Fri this week and Mon-Thurs next week. We are trying to remain positive. My dad does not feel unwell; he has been great and is in good form. Fingers crossed that he reacts well to the treatment. Please do keep in touch if you feel like it would help. 

Hi Grace, thank you for replying. My dad's appointment is this Thursday so your information is useful to me and my dad. The things I have discussed with my dad have been around quality of life and potentially longer life expectation. I've asked him whether he wants to hear what the prognosis is, I believe they won't talk about it, without being asked. I'm now feeling worried that he might be shocked if the length of time is not what he's thinking in his head. I brought this up in advance and not at the meeting because I wanted him to have some thinking time to decide if he wants to know. My dad is feeling fatigued, this is his main difficulty. Luckily, I live a twenty minute drive away and so can visit him regularly. I hope your dad's treatment goes to plan. It's great that he is feeling well. Make sure to look after yourself too.

HI Grace, my mum who is 79 was diagosed with AML six weeks ago. I am absolutely devastated. Do you mind me asking how your dad is doing please? Does he go out and about. I'm worried about my mum getting an infection so don't know what to do. 

Hello! Dad is moving on to his third cycle of chemo now. We are held back a bit because he is on an antibiotic for a urinary infection. But to be honest, he has been absolutely great so far. He has had pretty much no side effects and goes about life as normal! He drives, goes for walks, goes out for dinner, and goes for a couple of pints on Thursdays. Now he has lost a lot of weight, but we know it is not curable, but he has been really good. His bloods also showed improvement after the first cycle which is great too. It is a devastating diagnosis. I have been up and down. But allow yourself to be upset - that is natural. I have been keeping busy taking him to his appointments. I have found that I just go into action mode, and that is what keeps me sane, if I am helping and taking the pressure off him by doing all the admin and driving. One of the most difficult things has been navigating the NHS. Please do let me know if you have any specific questions. Feel free to reach out.

Hi Grace1808 great to hear how your dad is doing….. in the early days of pre treatment…… it all seems to be impossible….. but this is often not the case ((hugs))

Thank you for taking the time to reply. It sounds as if mum is a month behind your dad treatment wise. She is currently on her second round of chemo but last night they had to give her fluids as they were low. As the weather has been nice, mum has going to be out for a drive but like your dad, she has lost a lot of weight. I'm going to go and speak to someone next week as I feel as if my whole world is falling apart right now. I'm probably not the sort of person you want to be messaging as I just can't be positive about anything right now. It's constantly on my mind. I think I need to start taking each day as it comes but I'm finding it very difficult. 

Hi Sarahbeejeee39c46 ‘talking’ with others can help.

You may want to 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

You may also see if you have a Maggie's Centre in your area as these folks are amazing.

The Macmillan Support Line is open between 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, benefits/financial/work guidance or just a listening ear and do check to see if you have any Local Macmillan Support in your area.