Daughter just diagnosed

Hi BillyJ and welcome to this corner of the Community although I am always sorry to see hear about your daughters AML diagnosis. I am Mike and I help out around our various Blood Cancer groups.

I don’t have Acute Myeloid Leukaemia (AML) but I was diagnosed way back in 1999 with a rare, incurable but treatable type of NHL reaching Stage 4a in late 2013 so although my Blood Cancer ‘type’ is different I do appreciate the 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.

How your daughter found out about her AML diagnosis is actually not that unusual, blood cancers can be like this. I may have been living with my type for a number of years and had no idea.

As for tips on what will help her go through her treatment you may find this link > Top Tips for the day of your Chemotherapy helpful. It is taken from a Lymphoma support charity but the tips go across all blood cancers.

The Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provide 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

Always around to help more or just to chat

Firstly let me say how sorry I am to hear this news, AML is an earth shattering diagnoses and certainly turns your and your daughters world upside down. My 55 year old wife has just come to the end of her treatment and is now in remission, so there is light at the end of the tunnel. Generally the younger you are the better the prognosis and we have a friend who was diagnosed at the age of 24 and 35 years later is still living a full and active life after his period of treatment. My wife had 4 cycles of chemotherapy which lasted from 23rd March until this week. The treatment is difficult and in Karen’s case involved 4 stays in hospital of 4-5 weeks in duration with a week at home between treatments. Listen to what the consultants say, and take notes, ensure you are linked with a Macmillan nurse who can help and support your daughter and the whole family - they are great. Each individual’s treatment differs to some degree. 

Hi, Thank you so much for your reply. I’m so pleased to hear that your wife is now in remission and it gives me hope to hear about your friend’s recovery. 

Hello Billy ,

I am so sorry to hear about your daughter, I am in remission from AML , You ask about what she will need during and after chemotherapy. I found that the first round was the worst as I wasn’t offered anti sickness and it was bad . Once I was prescribed the anti sickness medication and also a steroid on the rest of my chemo’s it wasn’t no where near like the first time .

she needs to drink a lot of water to keep her kidneys healthy also but the hospital will keep a close watch on her.

she may be offered a Bone Marrow Transplant once in remission which I had . It is tough but I am so pleased that I had one as now fingers crossed I seem fine .

I wish you luck . 
give her a lot of support she will need it .

Hi BillyJ,

I'm sorry to read of your daughter's diagnosis. I was innexactly thr same position on 12 July, albeit I am 2 weeks off 50.

It sounds as though it has been caught early, like mine was.

I won't lie, my first round of chemo was brutal. 10 days on 3 drugs (DA+GO), plus I got an infection that took several types of antibiotics to sort and really bad oedema (water retention) - my legs looked more like a balloon animal's than human!

The good news is it did the job and I achieved a complete remission.

I finished the hospital part of cycle 2 last Wednesday (8 days, DA only) and the chemo is doing it's thing in my body. Think I've got two more cycles to go.

So, support you can give your daughter. Tell her not to wait to ask for anything if something doesn't feel right. I got really bad shivering and thought it would go. In the end, after quite some time, I rang my call bell, and the nurse thought I was nuts to have waited so long.

The fatigue is horrendous, so doing anything can feel like a marathon. Support with getting round the hospital/home, showering, basic chores. Assuming she will be an in-patient, and with nurse/doctors permission, taking her for a walk in a wheelchair just to get her out of her room - it worked wonders for me just going to a little garden outside the hospital and feeling fresh air!

I took simple craft activities, puzzle books, reading books with me, things that didn't require too much brain power and were easy to pick up and put down, to beat the boredom. Snacks too, she needs to eat what she can when she can, and having favourites to hand was great for me.

Help to access support services through any charities - you obviously have found Macmillan, do you have any local cancer charities? Benefits help in particular is crucial early on.

Most of all, just give her your love, be there for Her to cry on, rant/shout at, laugh with - in other words, be her mum.

I hope some of my ramblings above help, feel free to reach out to me for anything, and keep us posted how she (and you!) Are doing.

Tracey x