Just diagnosed

Hello. After a routine medical check up in January, several abnormalities in my blood were detected. Tests and a scan followed and it was attributed to lupus. However, I had a sixth sense something else was wrong and insisted on a bone marrow biopsy. Had this last Wednesday and got call on Thursday with devastating news I had AML. Aside from tiredness I am asymptomatic. I considered myself fit and healthy. I go to the gym and Nordic walk 3 times a week. Yesterday I walked 7 miles, no problem. It feels surreal, I feel like it’s a bad dream I can’t wake up from. I already suffer from anxiety and this has now gone through roof. I can’t sleep, feel constantly nauseous and am very worried about my weight. I only weigh 49 kg and am scared my weight is going to plummet during treatment and I’ll be too weak to get through it. I can’t bring myself to research this condition. I have been overwhelmed with support from family and friends but I am still utterly terrified of what’s to come. Would appreciate any tips and advice on how to manage my anxiety in coming months. Thank you xxx

  • Hello Coot, welcome but sorry you had to join us.

    Those first few weeks are terrifying, I had the same when diagnosed late in 2021. I thought the end was nigh and set about preparing everything for my end..

    6 months later I am still here and in good health, doing all the things I did before.

    So I learned this abou AML and about myself;

    We develop AML through nothing we have done or not done.

    It does feel surreal, a parallel universe.

    You are already on the right path to dealing with AML, with your walking and whatever other healthy things you do.

    We can't do much to help ourselves apart from exercise, healthy eating and a positive attitude.

    Trust in your medical team, seek the best you can access. I give all credit to my medical folks looking after me,, It is all a bit try and see when it comes to treatment, for we are all different in our disease and reactions to medication. Go along with a committment to everything they advise and ask if there anything else they would suggest..

    For me, I did feel mentaly better once it became apparent that my end was not imminent and as treatment has improved my blood and pushed the AML to remission. My despair became hope.

    I lost about 2kg  and then my weight stabilised.

    I have stayed very covid aware and minimise contact.

    I am on pathway towards Stem Cell Transplant.

    best regards and love to you, John

  • John, thank you so much for replying to my post. Your words have really resonated with me. I’m someone who always goes for the worse case scenario and I really must make a concerted effort to break out of this thought process. If I don’t, the anxiety and stress will be detrimental to what is to come. Gonna try my best to get my head around this. Thanks again 

  • Hi coot, are you uk? just wondering.

    Yes, work on that positive, whatever does it for you, I stay busy as a way to ward it off. Learn when the bad stuff sneaks up on you and find ways to avoid.

    For me the bad stuff creeps into my head when I wake and lie in bed, I have learned to get up immediately and do something that occupies me, maybe a puzzle for that takes over my mind.

  • Thanks for checking in John. I’m not great. Morning is my worse time too. Was awake at 5, so was my partner, he’s struggling now. I do online jigsaws so will try those when can’t sleep. This limbo situation is doing my head in. Supposed to have appointment at Bart’s tomorrow but Easter seems to have stopped play. Need to get the ball rolling on this and see an actual person. So far, just been telephone calls with Haematologist. Did you take any medication to cope with the anxiety? Already on setraline but thinking of sleeping pills. 

  • No meds for anxiety, in fact seemd to have got past all that, stay busy, with hope, I less anxiety than I had for years, now that things are going well and I still healthy am grateful for it all now, 

    I quite tired though, am short of an hour or two sleep every night but it has improved.

    I attend McMillan, happens to be 3 miles from my home here in Norfolk, get all my treatmet, initially blood transfusions but they became unnecaessary whn by body responded well to chemo injections and tablets.

    I increased my meat to support my haemoglobin,. had been mostly vegetarion, not much we can do but I went for a more balanced diet, quality meat, fresh fruit and veg and lots of water.

    I am signposted to Addenbrooks for Stem Cell transfusion.

  • Hi  and a second welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Blood Cancer groups.

    I don’t have AML but I was diagnosed back in 1999 with a rare, incurable but treatable type of Non Hodgkin’s Lymphoma Stage 4a so although my Blood Cancer ‘type’ is different I know this journey rather well.

    You have received some great support from John. The fear of the unknown can indeed be debilitating in the early days but it's important to aim to develop a frame of mind that you only worries when you are given information from your team that they are concerned about...... but this skill does take time to develop.... but once you develop this skill you will see a change in your wellbeing, anxiety, sleep......

    For good information do check out Leukaemia Care UK who produce very good information and various support platforms including their Buddy Scheme where you can be connected up with someone who has walked the walk.

    On the whole most blood cancers are treatable with good results. There are many levels of treatments available and like John I already have had 2 Allo (donour) Stem Cell Transplant and am now over 5 years in remission and doing great.

    I don't know where you stay but if you are in the UK do check to see if any Local Macmillan Support in your area has opened up. Do also check out for a local Maggie's Centre in your area as these folks are amazing and provide support for all the family.

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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  • Thanks so much for making contact Mike and sharing the useful links. I have had a quick browse of the Leukaemia Care UK site and it looks very helpful. Appreciate it. 

  • Hi Coot

    As others have said, sorry you have had to join this group. I thought I would contribute with my wife's story briefly to date and also from a carers prospective.

    Firstly this group is AMAZING, I really dont  know how I would have coped over the past few years without such valued help and advise.

    My wife was diagnosed in Oct 18 with AML, totally out of the blue, just started feeling a little tired. She spend 6 weeks in Hospital  being treated with chemo, this was repeated on 2 further occasions over the next few months. Many patients go through this regime and generally achieve remission following the first treatment. I totally understand your worries and fears having been through these with my wife. It's terrible as a carer let alone being the patient. 

    The most important thing I found was having the belief that things will be ok. It sounds easy to say and others will tell you the same but it is true. My wife is incredibly strong and has a lot of will power, me however the total opposite, or at least I thought I was. 

    Know I have the belief,  thanks to this forum and the medical teams that I have met and all those who have been treating my wife.

    Sadly she relapsed in Dec 2020 and was told that a Stem Cell Transplant was required.

    Well that did scare the life out of both of us.

    You fear the worse and that is quite normal. After nearly 20 months free from the discease if hits you hard.

    Having the belief and strength in your body and mind pulls you through.

    She had the transplant with Cells donated from her Sister last August, she doing absolutely amazing, no infections, now on no drugs apart from antibiotics and only having monthly blood tests and no long trips to her London team.

    She even got covid 2 weeks ago for first time and beng immunosuppressed was very worried as was I. She was given the antiviral drugs and all cleared up In  2 days.

    I fully understand your concerns and worries, I'm absolutely certain everyone receiving news like this will be the same.

    Keep strong, keep believing and ask loads of questions to your clinical teams, they are there for you, and they will do absolutely everything they can to get you in a good place.

    Please feel free to ask any questions  going forward.

    Wishing you all the best.

    FULHAMBOY (Nick)

  • Thank you so much for sharing your story with me Nick. It’s given me hope and I’m trying hard to change my mindset to positivity. My partner also read it and found it useful as he is in the same boat as you and currently struggling. I’ve now been admitted to the London clinic, exactly a week since my diagnosis. Im absolutely shattered, it’s been an emotional roller coaster. Start chemo this afternoon and for next 7 days. Expected to be here a month, then home for 2 weeks then repeat, repeat, repeat. Still very apprehensive and fragile but the team here are amazing. 

  • Hi Coot

    I'm glad their starting your treatment now, it's a long road and twisty road your travelling with plenty of ups and downs.

    Stay strong and positive always, even when you feel down. My wife had similar treatment 3 separate visits as you I guess. First was pretty tough as you don't know what to expect, your body takes a big hit. You MUST try and eat as much as you can, especially before you become neutropeanic, and after the team will advise what you can/can't eat.

    Put on as much weight as you can, you will soon loose it. Drink plenty of fluids.

    You may well completely loose you appetite, but try and eat little and often, get plenty of you favourites in like Chocolate, crisps etc.

    Coot, do you know if you are NPN1 positive/negative and FLT3 negative/positive.


    This is the first step on the pathway to success, stay on it and focus on the positives at the end. 

    I will keep looking out for your posts and please don't hesitate to come back to me with any questions you or your partner may have, I will try my best to help.

    Our thought and wishes are with you.