31 year old facing AML fight.: Evening... - Leukaemia CARE

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31 year old facing AML fight.

NathaN89 profile image

Evening everyone.

In the last few days ive had to come to terms that i will be battling AML. But sadly there isnt much information out there regarding its effects on younger people. It seems to be all info regarding 65+ years old.

No treatment has been started yet, still waiting on results coming back but the 2 Doctors who have been treating me have said its basically nailed on AML. With 4 rounds of chemo lined up and potential bone marrow transplant.

The crazy thing is, it all started with sore gums over a 2 week period. Then it escalated rapidly from Monday morning.

So my head is still in a bit of a spin.

I suppose my real questions are the survival rates for younger sufferers and the long term survival. Ive read in the booklets that survival after 5 years is around 24% but the Doctor told me originally that lots of people go on to survive and have good lives.

Have I been basically given a death sentence here?

Apologies if some of language is a bit strong but I have a 1 year old boy, lovely wife, everything to live for and right now i am so angry at what has happened to me that right now i just need to vent almost.

5 Replies

Hi there and no apologies needed for the language :)

Surprisingly, sore and swollen gums is relatively common presenting feature in AML and often picked up by dentists.

I'm sorry to hear that you're facing this but the good news is that being younger your survival rates are much better as you're stronger and fitter than us old folk.

Much will depend on what subtype of AML you have and the genetics it's displaying. Treatment is not just chemotherapy but depends on the expression of various markers such as FLT3 (approx 30% of AML patients) which allows a targeted treatment aimed at the marker to also be used.

Transplant sounds scary but it's pretty routine these days and the doctors will have done probably hundreds so will be very skilled in looking out for potential problems.

Clinical trials are the best way to access new and potentially better treatments and the design is usually to compare the new drug with the best known (gold standard) treatment.

Here is the list of UK AML trials: bepartofresearch.nihr.ac.uk...

AML19 is probably the main AML Trial in the UK at the moment, more details here:

cancerresearchuk.org/about-...

Please ask about clinical trials, they are also a good indication that the centre you are being treated at is up to date and has AML expert doctors there. Your doctor will probably talk to you about them and your nurse specialist or research nurse are also there to help to answer and queries or worries you have.

When you know more about your particular variety of AML come back to us and let us know. We might be able to offer a bit more insight into things to help to inform you. In the meantime, I'm sending you and your family my very best wishes.

Jackie

Hi Nathan,

I’m so sorry to hear about your diagnosis of AML. I was diagnosed with AML in May last year aged 41 and am now thankfully in remission after 3 rounds of chemotherapy and targeted therapy (mylotarg). I too developed symptoms over a very short period of a couple weeks which made the diagnosis very difficult to come to terms with.

I found a lot of help from the charity Leukaemia Care - they provide lots of information and support for people diagnosed with leukaemia and their families. There is a section on the website which includes inspirational stories of people who have been through treatment for various types of leukaemia and I found it really helpful to see that it is an illness which can be survived and many people go on to lead normal lives again after treatment.

I hope all goes well for you over the coming weeks and months.

Esther

HAIRBEAR_UK profile image
HAIRBEAR_UKAdministrator

Hi NathaN89 welcome, sorry to learn of your diagnosis. feel free to rant. I see you have already had some replies from the group that may help with understanding of what this is all about and that younger patients do have better outcomes. It must be a terrifying time for you. I am sure others will join you soon to share experience, you are not alone. .

if you wish to chat to some one Leukaemia Care Nurse Advisors are available every weekday on our free helpline. You can speak to a nurse at the following times:

Monday – 9am – 5pm

Tuesday – 9:15am – 2:15pm

Wednesday – 9:15am – 2:15pm

Thursday – 9:15am – 2:15pm and 7pm – 10pm

Friday – 7pm – 10pm

Simply call our helpline on 08088 010 444, or email support@leukaemiacare.org.uk to book a time slot to speak with a nurse.

Leukaemia Care website support and information: leukaemiacare.org.uk/suppor...

leukaemia Care Living well with AML information booklet: media.leukaemiacare.org.uk/...

Leukaemia Care AML information: leukaemiacare.org.uk/suppor...

This recent leukaemia Care webinar about AML treatments may be helpful to give you some feel of how effective treatments are today and what they are, it is quite technical there will be a lot of language that is new to you, and is very complex, this talk does emphasise that treatments are very effective today and will be specific to your type of AML and your fitness. youtube.com/watch?v=GEQMp0d...

Keep us posted and do keep asking questions.

BW

Nick

eb108 makes a great point about the support offered by Leukaemia Care. Of particular help to you and your wife might be to access their counselling fund.

The details are here, including how to apply.

leukaemiacare.org.uk/suppor...

I hope it’s useful

Jackie

2003UK profile image
2003UKChampion

Hi, I think you are quite within your rights to feel angry and vent as much as you like. I also expect you and your family are in complete shock. Perhaps listen to your doctor, and not 'Dr Google'. When I was diagnosed with a different type of leukaemia I read a 5-10yr life expectancy, 17yrs later and I am really enjoying my life. I was in shock for a long time and felt that I had been whirl winded into this parallel universe that spoke medical speak and the world was going on as normal around me.

I could not explain to family, friends and work colleagues what I didn't understand myself. What I found a useful hint was to write down all my fears, thoughts, questions and practicalities to ask at my next appointment, I have also learnt to ask that follow up question too. Also any symptoms you might have, family history, medications, allergies all these questions might be asked of you. You might want to ask about hair loss, fertility, amount of time off work etc. etc.

There is a lot of reliable information on the Leukaemia Care website and also details of their support line and services. Leukaemia's can come about at any age from toddlers to more mature people.

My diagnosis did give me the opportunity to look at my life and what I needed and wanted to do and with whom, I am far less materialistic now, the best things in life are free and the people around me are priceless.

The best thing you can do now is just be kind to yourselves and look after yourselves.

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