Acute myeloid leukaemia

I’m so glad that Danae remains in remission! I wish you all the best. (Long time silent reader here)

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Hi @SarahMum

Fantastic news, hope the next 3 months are filled with sunshine and you make lots of great memories.

I’m now 2 years 7 months post transplant and life is good. I’m still cycling and have improved my fitness immensely in the last year. Doing another big bike ride in the French alps in six weeks. Yesterday, I had my monthly venesection, they took my ferritin level and called me a few hours later to say it was down to 516. I need it to be below 500. The nurse suggested I have 2 venesections in June then that will be the end of them.

My consultant told me last month that he isn’t going to speak to me until October, my 3 year anniversary and if everything is still good he will sign me off. I will then go on to annual checks with my CNS.

It’s been a long process but totally worth it if I remain in remission and cured from Acute myeloid leukaemia (AML).

All the best x

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Wow, @Muzza gosh your consultant seems pleased with you.
You have also done brilliantly with your fitness.
Really take good care of yourself and enjoy the big bike in the French Alps.
Please do let us know how you get on.

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It’s so good to hear good news from everyone here. I’m so happy for Danae and you @SarahMum and you @Muzza

I also find it fascinating to read about all the different treatments people have for what is all called Acute myeloid leukaemia (AML). It just shows how everyone is different.

An update on dad. He’s been in hospital since Friday and finally got moved up to the oncology ward at 2am on Saturday morning, but looks like he’ll be able to come home tomorrow. When we went in his white blood cell count was over 200, so extremely high compared to the normal 4-11. The hydroxycarbamide seems to be doing its thing though and today they were down to 47 so heading in the right direction. His platelets have been wiped out though and he is bleeding a lot, so he’s getting transfusions of them.

He’s been in a lot of pain, which they say is from an inflamed small intestine, possibly related to the rapid destruction of cells. It seems to be getting a bit better, so hopefully that will ease soon. He’s been on various IVs of drugs and fluid to try to flush it all out of him. I think the pain has actually been the worse bit. Plus he refuses to ask for painkillers, so I have to do it whenever I go visit him. He’s very stubborn and it drives me nuts!

Next steps are he’ll have another blood test early next week, in the meantime they’re looking at genetic mutations since last time and then we’ll meet with his consultant on Tuesday to discuss options.

I’m very aware that as an 82 year old man having Acute myeloid leukaemia (AML) for the second time the numbers are stacked against him, but he tolerated the treatment so well last time I have to hope that he can have something again.

It’s at least good timing as me and my partner are living at mum and dad’s at the moment while we have renovations on our house. Our cat even got on mum’s lap for the first time yesterday, like he knew she needed some comforting.

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It must have been a really difficult time for you all @Ilona. Thanks so much for posting us an update
Your thoughts and emotions must be all over the place.
How is your dad feeling, apart from the pain and his stubbornness?
It sounds, for a lot of reasons, that it is a good thing that you are living with your parents at the moment.
These next few days will give you all the opportunity to write down all your fears, questions and practicalities to discuss with your dad’s consultant next week.
Please do let us know how Tuesday goes and all of you be very kind and really look after yourselves

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Awwww @Muzza

It is wonderful to hear from you and I am really pleased that things are looking so positive for you :smiley:. I always remember you being part of our initial contact on this forum. Your posts are always inspiring- thank you.

Good luck with the ride :man_biking:. We have no doubt you will smash it! You truly are an inspiration.

Thank you for your check in and we wish you all the very best in your travels.

Go for it!

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Hi everyone. I have completed 2nd cycle of chemotherapy for Acute myeloid leukaemia (AML) in hospital, 8 days this time instead of 10, on day 10 but Iam not neutrophic yet, 1st cycle I was neutrophic on day 6 during chemo. I know it will happen and I was going to ask the Consultant if it takes longer to be neutrophic second time around and to recover, but I seem to have brain fog. Also feeling impatient I guess and want to get on with it.

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Hi @Caroline30 very personally it sounds to me as you are asking the right questions and I can understand you feeling an ‘impatient patient’. and just wanting to get on with it.
Really be kind to yourself and please do keep posting as I found your post was so practical and also so descriptive of your thoughts and feelings, thank you.

Morning all,

Dad definitely feeling much better physically now. He was allowed to come home on Wednesday evening and is better for having home cooked food and being in his own bed.

Mentally I know it is hard for him, but I think having us around helps. Although our cat has scratched his beautiful expensive leather sofa! So we’re all on the dog house a bit at the moment. Still, I’m glad dad is around to be annoyed at him.

I’ve been pretty exhausted, but last night I took an evening for myself. My partner went out, so I did some yoga, had a long shower, painted my toenails a cheerful colour and watched Ted Lasso with a glass of wine. I feel refreshed today, so it was definitely needed.

@Caroline30 I’m obviously not a medical expert, but my dad had slightly different experiences with each round of treatment. Sometimes he was neutropenic earlier, sometimes the brain fog was worse, sometimes he felt fine. I think it depends so much on all the different things your body is dealing with at the time.

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Hi @Ilona you have really shown the benefits of looking after yourself for an evening, perhaps many of us should take a leaf out of your book.
I have a mental picture of your cat being put in a dog house, what shame, sorry it is my sense of humour!!
Their is nothing like home cooking and your own bed.
Really spoil yourselves and please do keep posting

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It’s been very lovely reading about your journey as we start on ours. It’s been a great place to learn about what our future may hold.

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