Sister diagnosed with AML

Recent diagnosis
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Hello,

My sister (25yrs, fit, healthy no other medical issues, doesn’t drink, smoke etc) was diagnosed 5 days ago with Acute myeloid leukaemia (AML). She is set to begin a 7 day course of chemo from this Tuesday. We are waiting to hear on her genetic mutation results tomorrow.

I’m so worried for her, it was a complete shock her results as she seemed so well in herself. Has anyone got any positive remission stories of the same disease?

I think I’m just looking for some similar stories and to feel some kind of hope as I feel so physically sick with worry for her and absolute anger at the fact this has happened to her. I know cancer doesn’t discriminate but I still sit here and think just why her…

Thank you in advance.

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Hi @Sophie0103 I am so glad that you have found us, welcome.
Your very natural anxiety really comes from your post,
You are so right that cancer does not discriminate,
Your sister really is lucky to have you to support her.
I hope others will be able to share their experiences and the Blood Cancer UK support line is also there for you on 0808 2080 888.
Perhaps because things have moved so quickly it has not given any of you time to come to terms with her diagnosis.
I found it helped me to try, and I know that this is not easy, to take things a day at a time.
I reckon the biggest gift you can give your sister is to be there for her emotionally, physically and practically.
We are here for you to support you as I think it is so hard being a sibling/carer, people often do not ask how you are doing. I have found that I can use this forum to say how it really is for me.
I look forward to hearing more about you.
Really look after and be very kind to yourselves

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Hi @Sophie0103

Sorry to hear about your sister and at such a young age.

I was diagnosed at 43 which is still young in terms of Acute myeloid leukaemia (AML). I am 3 years 5 months post stem cell transplant , living a normal life. You should be able to see my posts about it.

The treatment is tough going and everyone reacts differently to it. Medical science has evolved so much over the last 10 years and is giving people a far better chance.

There are plenty of posts on here with people sharing their experiences of Acute myeloid leukaemia (AML) and I’m sure others will post on your post as well.

Wishing your sister all the best with her treatment and a successful recovery,

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So sorry you’re having to deal with this but I’m really glad you’ve found this forum.

My husband was diagnosed in October 2023 at age 32 with Acute myeloid leukaemia (AML). He’s doing really well and will be 34 in a month. Hang in there and be so kind to yourselves. Post any questions that you might have! There are lots of success stories so please bear this in mind and listen to her doctors. Some of the data is outdated that you can find online and it’s easy to spiral.

Sending you lots of love & if we can help, do let me know:

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Heya @Sophie0103

I am sorry to learn of your Sister’s diagnosis. I have a (long!) post on here detailing when my gorgeous daughter was diagnosed with Acute myeloid leukaemia (AML) at the age of 20 years old.

Welcome to a wonderful and supportive space :blush:. Look after yourself as well as your sister in this. Take each day as it comes and please feel free to keep posting/checking in here.

Every cancer story is different but we can all seek support and advice here.

Sending positivity

Sarah

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Hi @Sophie0103

I can really relate to your post. I was diagnosed last year on February 29th (so I’m just approaching my diagnosis anniversary), and, like your sister, I was only 33 and always the “healthy one” in my family—active, never smoked, barely drank, and rarely got sick. In fact, I only saw my GP once in eight years, and that was for a mouth ulcer before a trip to Namibia, just to be safe!

From the start, I was told I’d need a stem cell transplant, which I had in July after two rounds of chemo and the conditioning treatment. Thankfully, my recovery has been going well so far, and I’ve been in full remission since May (there were some issues with my April biopsy results, so we’re not 100% sure if I was already in remission then, but I might have been).

I know how overwhelming this time can feel—it’s as if you and your sister have been thrown into a completely different universe for a few months. One nurse once told me, “Remember that everything is temporary,” and that really helped me get through the tough days.

The journey is unpredictable—one day, your sister might feel too exhausted to even shower, and a week later, she might be able to go for a short walk. There will be a lot of ups and downs along the way.

If I can offer some advice, I’d recommend long TV shows—the kind with 8+ seasons and 20+ episodes! I also got into meditation while in the hospital, which really helped. And most importantly, tell her not to wait if she’s feeling unwell—whether it’s nausea or anything else, the sooner she lets the nurses know, the quicker they can help.

Sending big hugs to both of you! If you ever have any questions, don’t hesitate to reach out.

Xx

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Thank you Erica for your reply - I really appreciate all your words of encouragement and advise!

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Thanks so much for your reply. Having read a similar story it makes us feel hopefully that my sister will be in remission and we can start to look to the future for her. As it’s still so new and raw it’s so scary and the thoughts of her being unwell is hard but I know she will get through this. X

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Hi @Sophie0103 it sounds really hard for you and as ever you really need to look after yourself as well as your sister.
Relatives and carers are the unsung heroes in my book and once my batteries get run down I am no good to myself and others and it is so much more difficult to build myself back up again.
Be very kind to yourself and we care about you too on here

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I can only reiterate what @Erica says about looking after yourself too - if you come and see your sister often, either start a tv show together that you can watch every time you are there or bring something that you like to do yourself like a book as some days she might just sleep most of the time.

Also try to remember that there are so much progress in leukaemia treatment all the time that she will be ok! Being younger and fit adds up in her favour :heart::heart:

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Thank you for the kind words Erica :heart:
I always worry about leaving her in hospital but juggling full time work and a toddler isn’t easy! My mums been by her side 99% of the time. Hoping her next bone marrow test comes back with good news. I’m also being tested for stem cell match, so fingers crossed! Xx

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I will try and take it easy!
Ah thank you, it really reassures me that she’ll be ok! I’m just so worried about her next bone marrow results, hoping and hoping it will be good news. Xx

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Wow @Sophie0103 your word is so apt ‘juggling’ you certainly are, and perhaps even more reason to try and look after yourself as well as everything else in your life.
Please feel free to pass our words on to your mum, she must be exhausted too.

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Hi Sarah,

Thank you so much for your reply. I’m so sorry to hear about your young daughter, she sounds so strong and such an amazing young girl - you must be immensely proud.

I’m glad I’ve found the forum, it’s made me feel so reassured and at ease abit more with my sisters diagnosis. Thank you for your kind reassuring words x

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