Hello everyone
My husband has been diagnosed with Acute myeloid leukaemia (AML) this week after a week or two of feeling progressively more run down. It has been a really shocking few days and treatment starts tomorrow. We are trying to stay positive and take one day at a time. I would be so so grateful for positive stories, words of wisdom and advice. He is 32 and we have two children so we are trying to remain positive for the future.
Thanks, and best wishes to everyone reading this.
Hi @Toadmum
Welcome to the forum. I am sorry to learn of your husband’s diagnosis but you are already doing 2 great things - trying to stay positive and being part of this wonderfully supportive forum family.
My 20 year old daughter was diagnosed with Acute myeloid leukaemia (AML) in April this year (6 months ago yesterday). Those six months have been a real rollercoaster but we have been supported on the ride by her wonderful haematology team and the lovely people here to include the advice and support you can access from the @BloodCancerUK-SupportTeam
We learnt very quickly that everyone’s cancer story is different - it will depend on things like gene mutations and treatment is adapted accordingly. Also, the way individuals react to treatment will be different too. Staying positive is a huge part of that so it sounds like you are off to a good start already. Some days are definitely easier than others to do that!
We write down questions/concerns (on a notes list on phone) and go through them all when we had ward rounds/clinic appointments. Use only viable sources to undertake research. Draw on all offers of support- we found kindness and support comes from ‘strangers’ to include the community here.
Take good care of yourself and your children in this journey and feel free to ask away as and when you have any questions.
Sending love and positive thoughts your way
Hi @Toadmum
First of all, welcome to the forum, although I’m so, so sorry you’ve had to seek us out. I know from experience of an Acute myeloid leukaemia (AML) diagnosis that you and your husband must be feeling terrified, shocked and so worried about the children and the future. It’s an horrendous experience, so I’m glad you’ve come here for support.
I want to repeat here what my GP said to me not long after my Acute myeloid leukaemia (AML) diagnosis. Acute myeloid leukaemia (AML) is ‘eminently treatable now’. Don’t be too concerned about not hearing the ‘cure’ word - consultants don’t seem to use that word often, because none of them have actually got a crystal ball to make absolute promises there will never be a return of the illness. They mostly seem to say ‘treatable’. And whether via chemo or chemo and a stem cell transplant, a good proportion of people are now able to get into remission and put the illness behind them. It is usually 6 months of intensive treatment mostly in hospital, and then months of recovery at home - a big chunk of life - but we do what we need to to get to the other side, huh?
Just for comparison, I’m a woman who was diagnosed at age 50. I had the chemo plus stem cell transplant (I had 3 gene mutations with a poor prognosis unless treated by transplant.) And here I am over 2.5 years post-transplant, fit and healthy, and with the news at my last appointment that at this stage, the leukaemia is highly unlikely to ever come back. Your husband is younger and probably fitter than I was, and the younger one is, often the better things are.
Please dont Google too much or read the statistics online. A consultant told me they are mostly out of date and don’t reflect the recent better outcomes through advances in treatment.
And be aware that treatment is a process with an inevitable amount of ups and downs, and hurdles along the way. Your husband will likely get an infection or two - that is the bane of the lives of all Acute myeloid leukaemia (AML) patients, because the immune system is compromised - and he may well feel very rough from the chemo (although not everyone does) and the whole treatment process will plunge you into a world of endless drips and blood tests and people and appts. But you get used to the new 6 month medical bubble, and it is if course worth it to get better. But it can be quite an emotionally and physically difficult time, with many ups and downs, and bits of bad news and then bits of good news - quite a rollercoaster, unfortunately.
Perhaps your husband and yourself could have a think about strategies or techniques to deal with the worry of it all? Always best to be prepared. Support networks; yoga; meditation; self-hypnosis; chocolate; smashing bottles - whatever works for you. (Although I don’t think you can smash bottles in the hospital room!) And there are threads on here about what to take into hospital to be comfortable and entertained, which might be of use.
And maybe think about contacting Macmillan about financial support/benefits help, or ringing the helpline here for emotional support or any other advice (0808 2080 888.)
And please remember you’re not alone; we’re here to help; it is possible to get through this awful period, and that many people do. And your husband will be in very skilled hands.
Thinking of you all. Please stay in touch if that would help.
Very best wishes
Fullofbeans
So sorry to hear about your daughter and the journey you are on, but she sounds like she is doing magically. I’m so appreciative of the time you have taken to reply.
I think part of this is just the sheer speed and shock, both of how quickly he has gone from feeling super well, to run down, to getting the results, as well as to how quickly treatment is starting etc.
Trying to keep positive, and be kind to ourselves, and trying to take some practical steps each day to make him and us as comfortable as possible. During the day, I’m managing to think just about the day and immediate tasks but once I go home, and try to relax and go to bed etc, my mind starts to wander on the future, or just how big this journey is going to be. I need to try not to do this but it’s easier said than done.
Take care of yourselves today and hope you have something to look forward to and enjoy this weekend.
Thank you so much for your lovely note. It has been such an uplift and I read a few pieces out to my husband. I am trying not to think too big picture as it’s very overwhelming, and instead trying to do some of the practical admin pieces as well as ‘pretend’ to take care of myself. That sounds silly but right now I am just going through the motions - showering, skin care, my smoothie etc hoping that it will keep the routine going.
Today is a big moment, as he starts treatment, I think he is ready to get going and feel like he’s fighting. He is currently mentally in a very good spot, he’s very persistent and determined at the best of times, so we will try to keep that going.
I also wanted to mention that we have a friend who had Acute myeloid leukaemia (AML) ten years ago and is well and doing fine. This is a real source of comfort to us, and I will try to gather as many positive thoughts as possible.
Did you feel bad during the chemo or is it typically as the treatment cycle ends and you move into recovery / monitoring that the mental and physical challenge was the hardest?
Oh @Toadmum I am so glad that you have found us so quickly.
I cannot better the responses of @SarahMum and @Fullofbeans.
You are now both part of our forum family.
I have Chronic lymphocytic leukaemia (CLL) but what I do remember the shock and fear of the unknown when I was diagnosed 19yrs ago. Just reading your posts it comes flooding back to me.
I felt in a bubble with the world going on normally around me.
The rollercoaster of thoughts and emotions that I could not get off
The thought that I would never see my son get married, well I am still waiting and he will be 50ys old next month.
Just try and take it a day at a time, even an hour at a time sometimes.
If you would like to talk to someone the Blood Cancer UK support line is there for you on 0808 2080 888.
Just look after yourselves and be ever so kind to yourselves.
Last thing for now you might both deal with things very differently, there is no right or wrong.
Please keep posting I look forward to hearing more about you
Hello @Toadmum,
I hope you are doing okay today? I am so pleased you have found this space.
I can see how much wonderful support you have received already. I simply wanted to add that should you wish to talk things through with us at any point, we are very much just a phone call away- Blood cancer information and support by phone and email | Blood Cancer UK.
Take good care & go easy on yourself, Lauran
Everyone seems to respond very differently to the chemo, @Toadmum, and of course there are different chemos for different Acute myeloid leukaemia (AML) types/gene mutations. I had daunorubicine and cytarabine (and GO once) and I can remember reading the possible side effects, and thinking, ‘Blimey, surely no-one gets all those?!’ But I happen to be very sensitive to chemicals - I can’t tolerate much alcohol or coffee, for instance, and am allergic to a couple of meds - and so I did get many of the side effects, and felt very yuck indeed during and in the immediate weeks after each chemo round. But lots of people barely feel it. Personally, when I got home to recover, that was the easier part of it. And the Stem cell transplant wasn’t too bad - again, it was the chemo that was the worst bit for me. But this is all so variable - every person’s experience is very individual.
Fantastic that you have a friend who has recovered from Acute myeloid leukaemia (AML). And even better still that your husband is a determined and positive person. Positivity really does help with keeping afloat mentally.
I know what you mean about going through the motions of self-care. But keeping it up does provide an element of self-care in itself, in that healthy smoothy, and the routine, and being mindful that you must look after yourself too. I often think the relatives of the ill person have a harder time because for me, I felt too ill to dwell on things, whereas my husband and son had loads of time to think and worry - plus all the travelling, changed roles at home etc as well. So do keep looking after yourself.
Best of luck to your husband as he starts his treatment today. X
Thank you so much, digesting your note and will certainly reply in more detail soon. Treatment started today so that feels like a small win and a positive day. I’ve written it down, to remind myself on a day where I’m not feeling so good.
One day at a time.
@Toadmum - day 1 done. Take tomorrow as it comes.
My daughter (Danae) coped okay with the chemo itself. She had infections which have wiped her out - these can happen after the chemo round of treatment as it will wipe out the immune system. She also had an infection in her first picc line but that was just bad luck. Fortunately her team have always been on everything and changed/added medication to help her fight infections. My advice here would be to note any changes or anything that doesn’t feel right. Tell the team immediately as they need to know and can add/adjust medication accordingly.
She did lose her appetite during chemo rounds and survived on original Hula Hoops! Her team said to eat whatever she fancied so she kept snacking on Hula Hoops, orange juice and ice pops.
Try to get some rest tonight and take good care
Hi @Toadmum
So sorry to read of your husband’s Acute myeloid leukaemia (AML) diagnosis.
It is certainly something that rocks your world !
I was diagnosed in October 2022 , I was at work one day and in hospital the next.
I had symptoms that at the time I attributed to my age , I was getting breathless and a little bit more tired at times.
I went to my GP who took blood tests , phoned me that same afternoon to say I was to report to my local Haematology ward first thing next morning and that I was very anaemic.
Fast forward a few days, after more tests I got the Acute myeloid leukaemia (AML) diagnosis.
I had 4 rounds of Chemotherapy, and fortunately for me I did not have any real side effects at all, however, it was decided that I would need a Stem Cell Transplant ( which I had on July 12th this year )
As @Erica , @Fullofbeans & @SarahMum have said already , this is a great forum and everyone is so supportive.
Due to the fact that we’re all on this rollercoaster, at various stages though , we have unfortunately gained first hand experience of whichever blood cancer we have.
Hopefully you will feel supported aswell.
My one bit of advice is , don’t be afraid to ask your Consultant & medical team any questions. They are the experts.
Best wishes to you & your husband.
@SarahMum that is so helpful, thank you. I did sleep well last night, which I am appreciating today. Day 2 of treatment in progress, definitely a bit anti climatic in some ways. I wonder if this is because of how frantic the first few days are with bloods, tests etc and now things almost seem slower.
We usually lead a super busy life between work(s) and the kids, so some of this is also going to take getting used to I.e the patience and the waiting around.
Thank you for sharing more about your experiences @Fifimac . It is so wonderful to read, even appreciating that every persons journey will look very different.
I will keep you all updated as we move through the next couple of days. I’m so pleased to have found such a helpful community.
I hear you on the waiting front @Toadmum You do get used to having to sit and wait. I found this hard and one day got really titchy - I then received a ‘telling off’ by my daughter 
.
So, I found ways to pass the time - reading books with short chapters as I couldn’t really concentrate. I also kept a journal - adding entries on a sporadic basis but when I did my thoughts just fell out of my head and into written words. I don’t yet have the courage to go back and read my entries. Maybe one day I will…?
I hope you have some support around you to help take the strain from you? I can appreciate that kids need to be here and there and you will want to be keeping a sense of normality for them. Do give other people ‘jobs’ to help you guys out.
I hope all is going well with treatment. Take care
Sarah
The journaling sounds good. I guess then I’ve thing is that there is no obligation for you to go back and read your early entries, although maybe the day will come where you feel ready to. How is your daughter doing? Hope you are having a good weekend.
Thank you, we’re on day 3 of treatment and so far, doing good. He’s trying to eat and drink as much as possible whilst he still feels able to and is trying to relax as much as he can, and stay positive. He has a room so he’s relatively comfortable for now.
We have lots of family support who all live close by, and I’ve tried to tell as many people as possible so it’s ‘out in the open’. We’ve had so many kind offers of support, and I’ve accepted everything and will ask for as much help as we navigate these next few months.
The hardest part for me is going to bed as it’s lonely, and quiet and is where my mind is trying to jump months ahead or attempt to start randomly googling. That said, it has gotten a bit easier than it felt in the first few days.
Did your daughter stay in throughout her treatments and recoveries?
Wishing you peaceful Sunday vibes. X
Hi @Toadmum when you say the hardest part for you is going to bed as it’s lonely and quiet and your mind takes over and the you can randomly start googling and it is hard to stay in the day.
I immediately thought of the Mamas and Papas song (and by other artists) Dedicated to the one I love that says ‘the darkest hour is just before dawn’, yes, that is when my washing machine mind takes over and it is hardest for my mind to stay in the day and not leap into the future with the ‘what if’s’ etc.
@SarahMum has given you great ideas of what has worked for her, we learn quickly through our experiences.
Another thing I find so difficult to do is to ask for and accept help, it is so important, and I am glad that you have family, you are doing brilliantly.
Look after yourselves and take lots of care.
Morning @Toadmum
My daughter did come home after treatment cycles. She was in for 7 weeks after first one but that was due to complications and infection re: the picc line. She also got infections after each round which meant she had to come back in via A&E after each cycle too (*but please remember it is different for everyone in how they react to chemotherapy) She would always have to remain in hospital until the team were sure that her bone marrow had recovered and was producing cells. We became obsessed by her daily blood counts and how many neutrophils she had (or didn’t have?!) Your husband’s team
should talk to you more about this.
We were told early on (in first cycle) that she would need a stem cell transplant because of her horrible genetic mutations but this changed (in a positive way) and this has meant her treatment plan changed also. Her MRD test came back negative (in remission) after third round. Her team weren’t expecting this (they are very honest) so they consulted with a national expert and it was agreed with Danae to go the more ‘usual’ route of four rounds and then 12 months maintenance treatment using a targeted tablet drug. She will have 3 x monthly biopsies which will go to Guy’s for MRD testing and we go from there. If it should come back then we know she will need a stem cell transplant.
So, that’s where we are at. She came home last week and is now building up her strength and adjusting to her new normal.
Again, I need to stress that everyone’s cancer is different but the waiting and ups and downs are pretty consistent for everyone (judging by the discussions on this forum). It is brilliant that you have a wonderful support network as well as finding this forum and the amazing support that can be found here. In the low times there are some very special people here that have picked me up and dusted me down ready to face another day. Those same lovely peeps have also been there to celebrate the good days.
So, here we head into a new week. I wish your husband and you guys a positive start to the week
Sarah
Thank you, we wish you both health this week too.
This seems to be turning into my personal journey.
Another day successfully navigated. Several re-tests for blood yesterday and today because one of the results looked too good, followed by the re-attempt which looked too low. Apparently happened to one or two others in the ward which raised some equipment related questions.
Still eating and drinking, and not yet experiencing any side effects although expect these to arrive soon. Still waiting for full b/m biopsy results but we have been advised of slight tweak to treatment plan with a switch out of one of the planned drugs, for a differing one in a couple of days. Not really too sure what this means, and short of googling which I have done and which is just torture, we’re trusting that we’re in the best hands and that things will run as smoothly as possible.
Kids back into school which went well, and is a temporary weight off my mind. I will be back to visit again tomorrow with some alternate food options. The menu long term definitely leaves something to be desired.
I have had a bath, and going to get an early night so that I’m as refreshed as possible for another day tomorrow.
Wish anyone reading this a good evening.
** personal journal, not journey although I suppose that too!
Hi @Toadmum I prescribe extra bubbles in your bath and yes, an early night and be really kind to yourself.