Hi everyone! On January 21st , on my birthday. My younger brother was diagnosed with Acute myeloid leukaemia (AML). He is 30 years old. We thought he had tonsillitis and after several doctor visits , he ended up in A&E very soon after his blood test he was diagnosed and having a blood transfusion & we are now on the rollercoaster of Acute myeloid leukaemia (AML).
Reading through the forum I find such comfort in all of your stories , and it makes you feel not so alone in all of this.
So far his gene mutation has come back as CBF factor gene. Which has a positive prognosis and they say that topically this type of Acute myeloid leukaemia (AML) does not require a Bone marrow transplant.
My brother has been in hospital and has had a temperature for over 10 days and it will not shift but his neutrophils have finally gone up to 0.2 which is a positive.
I’m so proud of my brother he is so brave and has taken everything so well. I just can’t wait for him to come home for a bit and have some quality time with his family.
So Sorry about your brother! He is so young! Hope his fever breaks and is on the mend it’s so scary just be there for him like you are such Great Big Sister! That’s what all about Family be positive sending healing love and prayers
Hi @Clouisa a great big welcome to our forum, you are now not alone and you are part of our forum family.
I attach the Blood Cancer UK information on Acute myeloid leukaemia (AML) for you Acute myeloid leukaemia (AML) - what is it, symptoms, treatment and prognosis | Blood Cancer UK
What a day for your brother to be diagnosed, I expect you are all in shock, and you might all be dealing with it differently, there is no right or wrong
Just take it steadily and it sounds as if your brother is in the right place at the moment.
The Blood Cancer UK support line is there for you on 0808 2080 888
Please do keep posting as I look forward to hearing more about you all and just really look after yourselves.
You say how proud you are of your brother, I reckon that he ought to be equally as proud of you.
So sorry that you are in this situation, but I can hand on heart say that you have come to the right place.
My husband (32) was diagnosed in October with Acute myeloid leukaemia (AML) and boy was it a shock. You can probably find my post somewhere on the forum page if you like to read along. I know it has really helped me learning from and reading others experiences.
The only thing I would say is that just as I think things settle, the plan or something else changes so keep an open mind and take each day at a time. Sending best wishes to you all.
@Erica reading your kind and warm responses in the other forums made me join this chat. Everything you write puts a smile on my face the forum is lucky to have you. My brother is definitely proud of me!
@Karen thank you for replying to me so quickly my brothers temp has dropped today which is great news
@Toadmum i read your entire forum late last night and it was this that made me join the forum also. Glad to see your husband is doing well how is he ?
We have had some news today that’s his neutrophils have gone from 0.2 - 0.7 overnight which is amazing news and his platelets have significantly increased over night which the doctors are so happy about so he is due to potentially come home next week.
The only issue now is he has a very painful “fistular” down below and is in a lot of pain but they can’t operate due to the chemo.
I’m so pleased to hear. This forum has been such great support to me personally, I hope you will also benefit from posting.
He is doing really well thank you. He has had an infection between every chemo cycle but he has been in such wonderful hands. He is now neutropenic again and will be for a couple of weeks until his counts rise and then it should be time for stem cell transplant, hopefully.
So sorry to hear about the fistula but try not to worry too much. My husband has had butt issues during the two last cycles and in the last round, even intensive antibiotics didn’t do anything. They got to the point that they just kept him on paracetamol and reassured us that once his neutrophils rose, they would be metaphorically heading straight to his bum. His healthcare team were of course right, and in the light of day with neutrophils, it healed quickly.
You’re doing a wonderful job. Keep sharing and try to find time for yourself today too.
So glad @Clouisa that today has brought some good news and has been a better day for you all. @Toadmum has given you some great tricks like trying to take each day as it comes and find some time for yourself.
Be ever so kind to yourself and keep posting
Thank you so much @Toadmum glad to hear things are going in a positive direction and that a transplant is happening soon. It’s reassuring to hear that butt issues are a thing he really has been in a lot of pain.
He also doesn’t like leaving his room and has become a bit reclusive. Did your husband like to try and get up and about to get fresh air.
I can’t seem to get him out of bed at the moment.
Thank you @Erica i just had dinner with my mum and two of my best friends and it was a really nice evening’ super tired now.
Hi @Clouisa, firstly I’m sorry to read that your brother is going through the nightmare of Acute myeloid leukaemia (AML). I was diagnosed 3 years yesterday and it’s a roller coaster to say the least! In terms of appetite it was hit and miss, mine came back with a vengeance after about 4 weeks and I’m talking I ate more than I’d ever eaten all of a sudden. It was funny looking back on it now as I suddenly got cravings for things like liquorice all sorts, roast dinners, biscuits and. Would literally eat whole packets at a time, I just thought so what I fancy this so I’m having it, after not having any appetite it was marvellous! Wishing him and you all the very best and keep in touch on here. My attitude was listen to my body and do what it needs to do, take care, Sue x
This was totally normal for us each round. He forced himself to eat little and often or whatever he could manage. His taste buds were off and he said everything tasted like cardboard but that it does come back. He found it usually comes back when he’s home and has blood counts again, and he can have more home cooked food etc that he likes.
It is important to still eat and drink plenty to keep his body strong. If he can’t stomach food, the hospital should be able to give protein or nutrient drinks instead.
Bless him. I have a couple of thoughts about this.
He is overall pretty good and tried to get up in the morning and walk laps of his hospital ward. However, he wasn’t doing anywhere near 10k steps and often wouldn’t be outside in the fresh air. This didn’t stop him recovering so don’t worry if he’s not out and about walking.
There have been points in every cycle when his blood count is low and he didn’t feel like walking or was out of breath when he’d usually be striding around the ward at 7am. As his counts recover or his body fought off infection, he’d be able to be back out walking.
Lastly, it was quite painful for him walking when his bottom hurt so this might be a factor for him.
Little and often worked for us - a lap or two at a time. A quick walk to the coffee or water machine. A walk to the window for fresh air or to stand outside the oncology doors for a few minutes.
His head can get cold so he has a selection of caps and hats if we are outside etc and I think he feels more confident wearing a hat etc. Again, if it’s a confidence thing, or worrying about infection, could he walk around his room or the ward when it is earlier / later and quiet?
His nurses encourage a bit of walking or moving to his chair or readjusting regularly - good for their skin but also for their lungs etc. the more they can move, even for short periods, helps to keep their lungs pumping and the body strong.
Sorry about how long this is but I think it totally depends on how they feel and their mood that day but hope some of the above might help.
Sorry to hear the news about your brother’s Acute myeloid leukaemia (AML) diagnosis but glad you have found this forum. It is a wonderful and supportive place!
My daughter was diagnosed with Acute myeloid leukaemia (AML) last April when she was 20 years old. I started a forum post on here which shares some of her journey. It is indeed a rollercoaster which can get pretty scary at times. This forum and the specialist nurses from @BloodCancerUK-SupportTeam have really helped us through the scary times. My daughter has 2 nasty mutations but (against all odds) achieved remission which is where we are at now.
Do keep posting and asking questions of the specialists. All the very best for your brother. It sounds like he has a super special Sister to support him in all of this
@Suenew1967 thank you for such a lovely and reassuring message! So glad to hear you are doing well! I actually got him a pizza express last night and he really enjoyed it and he said it was the first meal he has enjoyed in a really long time so this made me happy!
@Toadmum thanks for such lovely advice, I’m so glad to know that this is not out of the ordinary. I’m glad to hear your husband is walking around right now my brother is being a little stubborn about getting out and about and has taken comfort not leaving his room however I think that will change when he comes home which could be tomorrow , Tuesday or Wednesday. the advice and support you have given is such appreciated I hope you and the kids are doing well! X
@SarahMum when my brother first got diagnosed I read the entire forum of you and Danaes story and your positive attitude gave me so much strength! You are an amazing mum I am so so so glad to hear Danae is doing well
@Clouisa ah no problem at all and thank you. So glad he enjoyed the pizza, it’s the smaller things in life that bring lots of happiness when you’re feeling poorly. Please keep us all posted and you take care x
so this made me happy!