Hi All, today I got diagnosed with Acute Myeloid Leukaemia aged 59. I am feeling confused, scared and quite emotional at times. I guess it is normal to feel like this. I should get admitted next week to start my first round of chemo. What should I expect?
@TimE a warm welcome to this community - I am so sorry to hear what you’re going through. It’s so understandable you’re feeling this way. Do you have much support around you at the moment?
In case it’s useful, here’s our booklet on Acute Myeloid Leukaemia (you can download or order a hard copy for free) - https://cdn.shopify.com/s/files/1/0196/7004/0676/files/Acute-myeloid-leukaemia-Blood-Cancer-UK-AML-0315.5.pdf?v=1609860137.
There’s also information on our website here.
Please do give us a call on our support line if you want to chat things through at all or if there’s anything we can do to support you, now and going forwards. Our freephone number is 0808 2080 888.
Hi @TimE a great big welcome and I am so glad that you have found us.
What a time to get diagnosed, I was also diagnosed, with another blood cancer, at this time of year, at the age of 53yrs old and that was 19 yrs ago.
I found I went through the festive period feeling in a bubble with everyone celebrating around me.
It is also a time when appointments etc are in limbo over the bank holiday. and perhaps you will have a lot of waiting.
Yes, I remember feeling confused, scared and very emotional and for me it took a long time to subside and I still get anxious before and during all appointments, tests and results.
My advice is to pack for however long you are going to be admitted. A light reading book or puzzles book, whatever you fancy hobbies etc…
My advice is to really look after yourself, although it does not make it any easier all your thoughts and emotions sound so natural to me and be very kind to yourself and @Alice_BloodCancerUK has given great contacts.
Please keep posting and I hope others can share their thoughts and experiences.
Thanks for the replies.
Alice: I am lucky as I have close family & friends who are supporting me along with my specialist nurse.
Erica: Thanks for the advice.
The current plan is intensive treatment followed by a stem cell transplant so hopefully this will be successful. I know I am just starting out on a long road to recovery and will have many ups & downs along this journey but it is comforting to know you guys are here and I am not in isolation.
Sorry to hear you have been diagnosed with Acute Myeloid Leukaemia. I was diagnosed at the end of July 2021 and less than a fortnight later I was in hospital receiving chemotherapy, all a big shock! I was in remission by the end of November but needed a transplant, I was difficult to match and in the end I had a Haplo (half match) from my daughter at the beginning of April. I’m pleased to say that I am feeling very well and in remission and 100% donor cells. Take each day one at a time, it’s certainly a journey, I coped better in hospital than at home but I am much less anxious now. I had retired 4 months before diagnosis (I was almost 54) and I’m looking forward to getting back to enjoying the life we had planned. Stay positive and good luck x
Oh I’m so sorry you’ve had this diagnosis, and I know exactly how you feel, as I was diagnosed at 50, 2.5 years ago. It’s such a shocking, scary, disbelieving time, and it’s very easy to think the worst.
What to expect?
Well, I had the intensive chemo and a sibling transplant. My chemos were daunorubicin and cytarabine. I had them by drip for 10 (?) days for the first round. Everyone responds differently to these. They give you info on the side effects at some point, and I’ve read here that some people have suffered no side effects at all. However, I think I got all the side effects and felt pretty awful! You could be anywhere on the spectrum of responses, but hopefully not at the far end with me. : ) But even if you do feel rough, just keep reminding yourself it’s evidence they are working.
I think most people get an infection or two once their bone marrow has been blasted - you’ll be very vulnerable to infection. But they’ll have you on a drip of what my nurses called ‘bleach’ -industrial strength antibiotics - at the first sign of an infection. You’ll spend a lot of time on drips, having chemo, antibiotics, red blood cells, platelets, potassium, paracetamol… All stuff to support you as you recover from the chemo.
It can take 2 to 5 weeks in hospital to recover from each round of chemo. Eat as much as you can now, because your appetite may go, and rapid weight loss is common.
You’ll likely have a 2nd round of chemo (mine was 7 days) to consolidate the effects (remission, hopefully) of the first. And then another round of possibly different chemo before the transplant. You may get home between rounds for a week or two - I did.
Obviously, hair loss and weight loss are usual. I didn’t move around enough, and the muscles on my legs deteriorated. If you can do a few squats daily, that will save a lot of trouble later.
You may not feel up to doing much in the weeks in hospital. I’m an avid reader but couldn’t concentrate for long enough to read or even watch tv - but some people manage to do crafts or even work. So prepare a few things to take with you for entertainment - an ipad is useful for Facetiming and films - but also be prepared not to have much desire to do anything and to sleep a lot.
You usually get a fridge in your room. I advise taking some high calorie snacks with you, perhaps both savoury and sweet. Weird things can happen to your taste buds, so what you like now may taste awful in a few weeks. Ice lollies! You may get a sore mouth, and ice really soothes it. Some hospitals provide them, but always useful to have your own stash. And fruit remained palatable for a long time - although it must be peelable fruit, to avoid bacteria.
Take a laundry bag to hospital so dirty pjs/clothes can be taken home for a wash. My hospital room was very cold at times because of the ventilation system. Some people take their own duvet, blanket and/or pillow - check if your hospital allows.
A lip balm and a decent moisturiser are soothing to dry lips/skin - chemo can play havoc with them. One nice thing is not having to worry about hairstyling or hair cuts. ; ) A hat is handy if you have a cold vent above you.
It can be an emotional roller coaster. You have a lot of time to think. If you can, plan ways to deal with emotionally difficult days - would Facetiming a friend help? A visitor? (if allowed.) Meditation? A favourite film?
You’ll soon get into a routine of 4-hourly obs; ward rounds; meal times; beeping drip stands; pressing the buzzer to get the beeping drip stand turned off etc. Even if you are doing nothing, at times it can feel quite busy. And strangely, the time fortunately does fly. This will be a distant memory in no time, hopefully.
And then you will be home! And home and life will never have felt so good. And just to encourage you - my life is now completely back to normal. You wouldn’t know I’d been ill to look at me. Although I do carry a few mental scars (hospital food!)
I’ll be thinking of you, Tim. If you want to know anything else, please just ask. And let us know how you’re doing, if you feel up to it.
Hi @TimE and welcome to the forum. I can see lots of our members have have responded already, sharing their experiences. I hope it’s helped to feel less alone and to know that we understand and are here to support you. You are still so early on in your journey and it’s so much to absorb and take in. Be kind to yourself X
Thanks for your replies very comforting to know you are out there.
What a brilliant , very useful and informative reply.
I was diagnosed with Acute Myeloid Leukaemia @ beginning of October.
As you said the shock is the first hurdle , that was how I looked at it. Everything you have described is so like my journey.
4 hourly Obs, beeping machines , bloods , drips etc.
However it does all becomes part of your daily routine very quickly.
I joined a Clinical Trial , have had two rounds of intensive Chemo.
I have been one of the lucky ones though and really hardly suffered from any side effects.
The results after my 1st chemo were very encouraging, less than 1% of Leukemia cells left.
I had an abnormal gene also but this is now Negative.
Not had results of 2nd Chemo as my counts are currently recovering.
Having faith in your Consultant helps I find. Being able to ask any questions along the way of anything that you are not sure of is a must.
It is a scary time , the unknown is horrible. This forum is really excellent as so many people going through exactly same illness with many same difficulties. I must say , not all doom and gloom though. Helping each other is fantastic x x x
Hi TimE, welcome to the long road to recovery with Acute Myeloid Leukaemia! I had my two lots of chemo before and during Christmas in 2019 - I was 64 and very fit so it was all a huge shock. I had my alloHSCT in Feb 2020 and came home just before lockdown
I remember my consultant telling me that ‘the hard bit starts now’ when I was discharged, and he was right. I was shocked at how deconditioned I’d become (I used to run half marathons) and it was hard to let my wonderful husband and family do so much for me.
I had a couple of hiccups with Graft-versus-host-disease of the skin, but have slowly but surely got there. All my bloods remain clear, I walk 10k every day, have managed to reduce my workload and do it online, and above all I’ve stopped berating myself for not being the person I was five years ago. Life is good despite still leading a moderately anti-social one because of Covid risk. I see all my small grandchildren, and we’re lucky to live in a rural area with lots of walks.
Where you’re at now everything seems daunting and unknown, but as you’ll find here, lots of us are at different stages post diagnosis. I only said to my husband the other day, there are an awful lot of worse conditions to get. I am pretty positive about life which I’m sure I wasn’t three years ago. Best of luck!
Oh I’m so sorry you’re going through all this too. But fantastic you are up to posting on here during your chemo, and that you’re not getting the side effects - that’s really good news. And it’s good for @TimE to see it really is true that not everybody suffers from the chemo. It’s a strange old thing, that, isn’t it?
Really brilliant that you’ve been able to go on a trial. Do you know the name of it?
You sound like you’re doing pretty well too - an excellent first response to the chemo, and you sound bouyant in yourself too. You’re so right to say it isn’t all doom and gloom. The medical staff are so brilliant; the treatments have come a long way and do do the job, and here we are on a forum, full of lovely, helpful people. I have to say, I have found countless positives in everything that’s happened to me. Wouldn’t want to go through it all again, though. : )
Really good points there, about trusting your consultants and asking for clarification on anything. We can often forget we’re allowed to ask questions and to understand all the processes. It’s our body and our treatment.
I think those beeping drip stands must haunt many of us here! Oh dear! That’s one of the huge reliefs of being done with treatment - free of drips and Hickman lines - bliss! Sounds like you’ll be there soon. Are you just having chemo, or do you need to have a Stem cell transplant too? I hope you’ll be finished with just the chemo.
Well, keep doing so well @Fifimac. You’re nearly there. Dare I ask - will you be home for Christmas? I really hope so.
All the very best to you.
Unfortunately you’ve joined the Acute Myeloid Leukaemia club!
I was diagnosed in April 2008 & had Stem cell transplant in August 2008.
It’s a bugger of a journey. Be prepared to loose your hair.
Things have changed a bit since I was treated but remember to listen to your team & follow their rules implicitly.
Your medical team will become your comfort blanket & feel like family by the time you come out the other end.
The best piece of advice I was given prior to transplant was to put on as much weight as possible as you will loose interest in food during the procedure.
I remember wondering what ‘normal’ would be like……well it’s like the ‘before’ normal. It comes with various hiccups along the road but it’s good.
I have been on numerous cruises since & am still here to enjoy watching my family grow up.
All the very best,
What great responses you’ve had here. I don’t have much to add but would like to wish you all the best. I had Acute Myeloid Leukaemia diagnosed in November 2019 and was admitted same day for treatment. I’ve been very lucky and haven’t needed a stem cell transplant and have been clear for nearly 3 years. I agree with everything that has been said about reactions varying, my main problem was my skin peeling all over - not great at the time but it looked fantastic afterwards! I was able to get “backpack Chemo” after the first round which meant I could spend more time at home - worth enquiring to see if it might be on offer if you are suitable. So pleased you have a family to support you, mine were amazing and it made all the difference. It’s taken a while to get back to something approaching normal, I lost a lot of muscle tone and I didn’t have much to start with, but hang on in there, it’s tough but once you’re through this you can start to get your life back. All the best. Ros
Hi Fill of Beans & @ TimE
I had 3rd bone marrow test done last Thursday, this will determine how the 2nd chemo has gone. Hopefully get the results in next week or two (holidays permitting)
If it’s a good result , the plan is for me to have 3rd round of chemo. This is all part of the protocol on the trial. It is called “AML18” ( clinical trial )
Depending again on final round of chemo & results , all being well, they have said I will go on to be monitored regularly and receive a bone marrow every 3months. No requirement for Stem cell transplant at this point.
Unfortunately I am going to be in hospital over Christmas as my partner and all the family have Covid I cannot go home until my partner tests negative. It really is rubbish timing as I was fit to go home until that happened !
Thank goodness for FaceTime, we keep in touch 2-3 times a day😊
I hope everyone has a peaceful and as calm a Christmas as possible. The forum will still be here for us all too , my own way of coping since my diagnosis is … don’t look too far ahead , ask questions ( if you want to ) and try to have faith in your Consultant.
Let’s be kind to ourselves , and reach out to each other when we feel the need. I certainly would be happy to keep in contact with anyone throughout the holiday season , please don’t feel alone. Not the way we all planned for our lives , but we’re in this together and a problem shared is a problem halved.
Once again thanks for all your informative & supportive replies it helps.
I am still on track to start chemo next week then a second course to follow before a stem cell transplant. Had an echo cardiogram on Friday to check my heart due underlying heart problem.
Anyway I hope you all have the best Christmas possible and I will post again soon.
Hi @Fifimac yes, that sure is absolutely rubbish timing with your partner and family all having Covid and you getting stuck in hospital because of it,
Yes, thank goodness for Face Time and Zoom the best things to come out of Covid times.
Yes, we will be here on our forum, please feel free to share what it is like for you being in hospital.
Look after yourself
Oh @Fifimac, I’m so sorry you’re stuck in hospital over Christmas, and that your family have covid - that’s such bad luck. It’s at times like these that those extra special nurses and healthcare assistants mean so much. There’s always someone who can lift your spirits and understand you, and give your arm a squeeze when you need it. And yes, thank goodness for Facetime. I hope you can find some joy in the day somehow.
But you’re a good way through your trial, and it’s such great news that it seems likely you won’t need a Stem cell transplant. I remember being two thirds of the way through my treatment, and I kept thinking to myself, ‘Nearly there! And then I’m free!’ You have got the worst behind you now, and you’re on the home stretch.
You’re absolutely right - we are in this together, and it does help enormously to share the whole thing. This forum is brilliant.
I hope you can smile and have some happy moments tomorrow, @Fifimac.
Love Fullofbeans xx
PS. My husband also has covid, and he’s on a cargo ship for Christmas - which has broken down…in rough seas! He’s somehow managing to laugh about it - just. Well, I think it was laughter.
Let us know how you get on, @TimE.
And I hope you can find some happy moments this Christmas. X
How are you doing today? It can’t be easy.
Sending you huge, ‘Goodbye Acute Myeloid Leukaemia’ wishes on this special day. And hope your husband is ok too.X
Hi Full of Beans one of my friends spent 4 hours visiting me today which was so lovely of her.
My partner is feeling lots better , I’m hoping I can go home on Tuesday
I hope you’ve had a good day too , how is your husband ? It certainly can’t be easy for you both either.
Thank you so much for messaging , I’m feeling good thankfully, enjoyed NHS Xmas Dinner now binge watching “ The Crown “
Enjoy the rest of your Xmas Day x x x