Connecting with other AML patients

I have very recently been diagnosed and will start treatment in just over a week. I want to be able to communicate with other Acute myeloid leukaemia (AML) patients.

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Hi @LesleyF and I am so glad that you have found our forum.
I hope others with Acute myeloid leukaemia (AML) will share their experiences for you.
What I would stress is that I have found that often it does not matter what blood cancers we might have we often share the same fears, thoughts and feelings, questions and practicalities.
However we are all individuals with unique medical histories and so there will be similarities there will also be differences.
I will give you the Blood Cancer UK website link to Acute myeloid leukaemia (AML)
Acute myeloid leukaemia (AML) - what is it, symptoms, treatment and prognosis | Blood Cancer UK
The Blood Cancer UK support services are on 0808 2080 888 as well
My handy hint would be to write down all fears, questions and practicalities to ask at appointments
I have found it a roller-coaster of emotions and a lot of waiting and not knowing
I really look forward to hearing more about you and really take lots of care of yourself and please do keep posting.

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Good morning @LesleyF and welcome to the forum.
I’m glad you found us! It’s a great place to share experiences and to connect with others who face the challenges of living with blood cancer.
It sounds like everything has happened really quickly which can often be overwhelming.
On here you can say exactly my how it is for you.
How are you doing? X

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@LesleyF welcome to this forum. How are you getting on with your treatment? Hope you are feeling well. You’ve come to the right place to connect with likeminded people.

I don’t have Acute myeloid leukaemia (AML) but my husband does. He was diagnosed in late October and I have posted regularly about his treatment and everything else that it impacts in our lives. I know that we will all look forward to hearing more from you.

There is an active leukeamia community on Reddit that we have found beneficial alongside this community. There are a lot of Acute myeloid leukaemia (AML) patients both in active treatment and long term remission on there. There are also a lot of Acute myeloid leukaemia (AML) Facebook groups where you can speak to people going through similar situations, depending on if this is your thing or not.

For reliable, balanced advise and support, this forum has been most invaluable for both of us.

Take care and look forward to listening to you in the future.

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Hi Toadmum, that is teally envourinh. I only got diagnosed this week but will start my treatment on the 29th april. I will post ad soon as I start my treatment and so gar wveryone in the haematology drpt. at the Victoria in Kirkcaldy has been very reassuring,
Lesley

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….sorry about all the wrong spelling, will focus a bit more in future!

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@LesleyF I was only diagnosed with Acute myeloid leukaemia (AML) on the 25th March and began my treatment on the 28th. I have found this forum so helpful in being able to share my feelings and posting updates, and knowing there is always someone who can offer advice on our treatment and worries. It all happened so fast for me and Iam still trying to process it, which I imagine you are still in shock at the moment. Dont feel alone, we are all here for each other. Sending hugs xx

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Hi Caroline, thank you so much for sharing and I’m sure we’ll have some stories to share as we go on our journies :wink:

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Hi @LesleyF

Sorry to hear about your diagnosis but a real
positive is you have found this wonderful forum.

My daughter was diagnosed with Acute myeloid leukaemia (AML) on 26 April last year. She was 20 years old when diagnosed. It has been quite the year?! She is now in remission and you can read her story on my forum posts here.

Do take care and keep posting.

Thinking of you and sending positive vibes

Sarah

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Thank you Sarah and glad your daughter is doing so well :wink:

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Hi Lesley,

Welcome to the forum. It’s a lovely friendly place.

I don’t have Acute myeloid leukaemia (AML) myself but my dad does. He was diagnosed on 29 December 2022 and started treatment on 17 Jan 2023.

He was on a Azacitadine and Venetoclax regime for 7 months and has now been off treatment in remission for 7 months too. He’s 82 now so couldn’t have a stem cell transplant or the more intensive chemotherapy.

It’s been a rollercoaster of ups and downs along the way and I’d be happy to share anything we’ve learnt during that time. Tips on drinking more water, tips on dealing with the constipation, tips to deal with the horrible hospital food or how to cherish the food things. Everyone here has their own story and their own things they’ve learnt, so you’ve come to the right place.

Ilona x

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Hi Ilona,
thank you for your post and glad your dad is doing well. I’ve got about a week to go before I start my first chemo so just trying to stay as healthy as poss atm. I am very grateful for these forums and will share more as I go,
Lesley

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Hi @LesleyF

I was diagnosed with Acute myeloid leukaemia (AML) at the end of January. This is my first time posting too.

I started chemo straight away (FLAGida) which had a long stay in hospital but actually passed quite quickly thanks to the lovely hospital staff. I was very lucky and didn’t suffer with any infections during this time but I know that it’s very common and to be expected. But don’t worry, the hospital will have everything covered in case you do.

I had a reaction to some platelets which was an interesting experience! Again, they have everything to help and there seems to be a drug for a lot of side effects (sickness etc) so they will make sure you feel as okay as you can. I’m not going to pretend, you will feel lousy, but I’d imagined everything to be a lot worse leading up to starting treatment.

Unfortunately I have a rare mutation ( I haven’t been able to find anyone with the same mutation) and FLAGida was unsuccessful for me. I’m currently on a course of Ven + AZA and praying this works or at least lowers my residual disease.

The mutation I have is T (3;3) Gata2, Mecom. At the time of my diagnosis I was informed my Acute myeloid leukaemia (AML) developed from Myelodysplasia Syndrome which I didn’t know I had, despite feeling something was wrong for a while pre diagnosis. If anyone else has this, although I think it’s unlikely, I would love to hear from you!

I am due to go for a Haplo Stem cell transplant in May. Although as we all know, the plan can change daily with curveballs thrown in at any time!

I’m a 39 year old mum with four children, who really need me around so I’m trying to stay as positive as possible despite the poor prognosis that comes with the mutations and knowing my chemo didn’t work as hoped. On the plus side, I am tolerating the current chemo very well with hardly any side effects so I’m at home spending time with my family for a few more weeks until transplant time.

Wishing you all the best for starting your treatment. There’s lots of support on here and know you’re not alone xxx

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Hi, thanks so much for your post and I’m praying with you that it works out. You sound incredibly brave and are an inspiration,
Lesley

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Hi @betterdaysahead welcome to our forum and to posting your experiences, I have noticed how useful experiences are to us all.
Please do keep posting how your treatment is going and how you are doing emotionally and practically. It cannot be easy with 4 children
The Blood Cancer UK support services is also there for you on 0808 2080 888
Be kind to yourself and please do keep updating us

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Thank you @Erica. My second round of chemo (ven aza) was unsuccessful too, infact my disease has progressed whilst on this treatment. I am starting MAC conditioning for my Haplo transplant next week but naturally very worried about the successfulness due to not making remission and also any complications from the transplant process.

It feels like a long time to be away from my children but they are so brave and strong, I am very proud of them.

I wonder if anyone else on here has had a transplant with active disease? Would love to hear from anyone if so.

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Hi @betterdaysahead.
Thank you for the update. It must be a really difficult time for and your family.
Children are amazing in times like this aren’t they. You must be so proud of them.
I completely understand the difficulty of being away from them for so long. This is when video calling is a life save isn’t it.
Please do keep us updated on how you are doing, when you feel able to.
Take good care of yourself :blush:

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Hi @betterdaysahead I once heard someone say that it felt like a lifetime being away from their children when they were in hospital, but a few years later it seemed to all of them a very short time in retrospect.
Personally I do not think your consultant and team would be considering a transplant if they did not think it was a viable medical decision.
We will all be here for you to say how it really is for you…
Be kind to yourself and as @Nichola75 says there are lots of ways you can keep in touch with your children
Be very kind to yourself

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