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AML

7 Nov 2019 00:19

My mum was just diagnosed with Acute Myeloid Leukaemia and its believed to be a secondary leukaemia due to radio and chemo she received 9 years ago for breast cancer. Really worried and I know each prognosis is different, but I was wondering about other peoples stories/experiences. Maybe just to get a little support for the journey we're about to set out on

AML

9 Nov 2019 11:45 in response to Gemma95

Hello Gemma95, 

Welcome to our forum. I am sorry to hear that your mum has just been diagnosed with acute myeloid leukaemia. I can imagine it must have come as a shock for you to learn the news and that it is a lot to take in at the moment. 

We have a detailed guide on our site on AML which you can find here. I hope it will answer some of the questions you may have on AML and if you have any questions at any point, feel free to get in touch with our nurses on this free number 0808 800 4040 - their line is open Monday to Friday from 9am to 5pm. 

As you rightly say each prognosis is different, but it can be comforting to talk to others and share personal stories or experiences. I hope that you will get to chat to others on this forum who have  been affected by AML. I had a little look around the forum and found a few members who also have a loved one who has recently been diagnosed with AML. There's @screamqueen ‍ whose sister was diagnosed with AML and @Charl-s ‍ who posted here in July and whose mum was it seems in a similar situation. I hope it will help you to talk to others who are or have been in a similar boat and that they will tell you more about what to expect and share their own experiences. 

Best wishes, 

Lucie, Cancer Chat Moderator

AML

9 Nov 2019 11:56 in response to Gemma95

Hi.

When I saw your post I just had to reply to you becuase I have a lot of experience with AML becuase my brother had it. My brother was diagnosed with AML back in Febuary 2017 at the age of 19. He was ill for 20 months and he passed away on the 18th of October last year. He was 21. 

 

If you need/want to talk, I'm here

  

AML

10 Nov 2019 16:47 in response to Gemma95

Hi Gemma95,

It's scary stuff and as Lucie said - so much to take in. People on here have been really supportive so hope you get a bit of the same! Don't feel like you need to become an expert overnight - or expect too much of yourself (I felt very wobbly for first couple of weeks - swinging between blind panic, random crying, hyper positivity, anger etc. but more on a level now) - so ask questions and be mindful that your mum might be processing the info at a different speed to you.

My 71yr old mum has spent a year fighting breast cancer (thankfully finished difficult chemo and in remission) and I'm pleased to say that although fragile she's slowly feeling better. At same time my sister was diagnosed with AML out of the blue - back in June, she's 45 with 2 young children. Treatment and prospects very much seem to differ depending on the persons age, health and genetic "markers" of the AML, my sister has a rare "flt3" marker which is 'a bad one' (research shows it doesn't respond as well to chemo so transplant is nearly always the route they go with that) but there's relatively new genetic drugs that are available that can target certain markers to "switch them off". So after the initial diagnosis they will probably have layers of further tests and results to make sure she's on exactly the right treatment. The bone marrow tests aren't very nice so if you or a friend can offer a hand to your mum to squeeze then I'm sure that will really help. 

My sister has just had a stem cell transplant. She's still in hospital, has some infection problems (they said to expect this) and close family have been visiting to help care and provide distraction. Her spirits are good - she amazes me! - and we hope more than anything that this is a marathon she can win.

My advice would be to never ever google stuff at night - there are some AML statistics that are scary but remember they're often too broad to be relevant or don't take into account the new treatments available.  I found bloodwise.org was helpful to understand more about AML in a factual and not too traumatising way. I know of many AML stories and some are positive outcomes, others not, but right now all you can do is deal with the hurdles as they come, seize any opportunity for moments of laughter, celebrate small wins and really remember to take care of yourself too. Even though people say to me 'take care of yourself' I know I don't always see the stress creeping up, so I've had to really consciously make time to rest and eat well.

Sending hugs. Here if you need me Happy xx