New here - Mother recently diagnosed with AML

Hi Will Will Q  and welcome to this corner of the Community although I am always sorry to see folks joining us and to hear about your mum. I am Mike and I keep an eye on our various Blood Cancer groups.

I don’t have Acute Myeloid Leukaemia (AML)  but I was diagnosed way back in 1999 at 43 with a very rare, incurable but treatable type of CTCL - NHL Low-grade non-Hodgkin lymphoma ……. eventually reaching Stage 4a in late 2013 when a second, also rare type of aggressive PTCL - NOS NHL was then presenting so although my blood cancer ‘type’ is different I do 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.

These are some of my simple tips (the links are taken from a Lymphoma Site but the information goes across all blood cancers)

Nausea may be a challenge, but remember your mum must not to suffer in silence as there are lots of tools available - but her team need to know how she is getting on as at times it is trial and error to get the right one. I was only sick once during my 750+ hrs of main chemo and this was down to a bad food choice…… I just wanted some takeaway food….. believe me it’s not a good idea.

Cancer-related fatigue may well build up over time so take each day as it comes but at the same time keep some activity going as this does actually help overcome some of the fatigue..... the less she does the longer the recovery.

There is a real Risk of infection so care needs to be taken to control infection contacts. Generally it takes about 48 to 72 hours for the body to break down and/or get rid of most chemo drugs.

But the effects of the chemo on growth areas and her general immune system will last for weeks and is important to remember that she may well be more open to infections at about days 7-14 as this tends to be the window when her immune system is at its lowest……. then the body recovers in time for the next cycle….. but the more chemo she has the longer the recovery can take so by the end of treatment it could take a few months this to recover completely.

I was given this simple rule for keeping eye on infections…… If my temperature is 37.5°C, repeat in one hour. If my temperature has increased, whether I feel unwell or not, I must contact the hospital.

I would also highlight the importance of drinking lots of water (the aim is 2 litres every day) as this will flush out all the toxins released by the chemo, protects the kidneys and keeps him well hydrated.

It is VERY important to have accurate contact information/names/numbers for reporting in issues especially during out of hours and weekends.

There is no need to be a hermit….. you can go out. I would meet up with friends in a quiet corner of a burden centre….. fresher is a good healer……. The main thing is check that folks visiting you at home are not carrying a bug…. coughing, sneezing etc….. and open the windows and let some fresh air in,

This link will help you get her ready for her treatment as it's a collection of suggestions from people who have been through treatment and are things that helped them during treatment...... Top Tips for the day of your Chemotherapy

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, benefits/financial guidance or just a listening ear.

We also have our Ask an Expert section but do allow a few working days for a reply.

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

You may also want to check to see if you have a Maggie's Centre in your area as these folks are amazing and most centres do run monthly Heamatology Support Groups and the one I attend does have a few people with AML in it so worth checking.

Always around to help more or just to chat

Hi will Q 

Sorry to hear about your mum.

My mum at 75 was diagnosed with AML and went through chemo, but unfortunately she developed an infection then Sepsis and passed away in February. Mum became very week, had no strength, no bladder control, couldn't sit up or the strength to walk or eat. Look out for those signs. God bless to your mum and your family.

Thank you Steve - and my thoughts to you and your own family too. Thanks for sharing. I really appreciate it.

Thanks for the welcome Mike and the suggestions - all really helpful, thank you. Glad to know you're with us.

Hi Will,

Sorry to hear you've joined the parents with AML club. It isn't one I would wish on anyone.

My dad was diagnosed just after his 81st birthday in December 2022. He started the Venetoclax and Aza regime in the January. Initially he was in hospital for 5 weeks, getting sepsis on day 2. But they cleared that up quickly and one they were happy he was allowed to have the next 5 rounds as an outpatient. During that time he has 2 infections that pub him in A&E. I'm not going to lie, they were horrible. But he wasn't picking them up every week like we worried.

After 6 rounds they stopped the treatment as he was in remission and the treatment was actually making him worse than the leukaemia. He then had 7 or so months of a pretty normal life. Went to the gym, the theatre and saw friends. 

Then in May this year he relapsed badly. This time he's on a different medication, Gilteritinib and just keeps getting infection after infection. I'm currently stood next to his hospital bed. 

We found it quite easy to spot signs of infection. He would get confused and start to slue his words. When it got really bad he would be shaking with cold. I would recommend getting a thermometer so you can check it at home if you feel worried. 

The infection he has this time he got from my mum and I'm hindsight we should have quarantined her away from him when she got ill. But it's hard to tell her what to do. 

If I think of any more tips I'll come back and let you know. But either way I wish you all the best with coping with this horrible situation.

Ilona x

Hi Ilona

Thanks for sharing so much of what you and your family are going through. It really helps to hear what this is like for other people.

I do worry about infection, so I’m glad to hear you could see the signs early and that they weren’t as common as first thought. Hopefully that’ll be the case for us too.

Please do come back with anything else you’d like to share. For now I hope that things have improved for your dad. You must be worried about him. But I’m glad you’re by his side.

Will