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 
. 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 
. 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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Just wanted to say that reading your updates makes me so happy every time. Hope you are both doing well & that Danae is enjoying herself! Take care xx
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Hello, I’ve found it very useful reading everyone’s stories, which show the ups and downs everyone has on their journey. I was diagnosed with Acute myeloid leukaemia (AML) in late February and I’m now onto my third round of chemotherapy.
The first two rounds went well. I was really anxious about the impact the chemotherapy would have but the side-effects were not too severe and I have been trying to stay positive and take things one step at a time, while trying to keep to routine like going for walks outside each morning, which I’ve found really useful and good for me.
I was in morphological remission at the end of round 1 and 2 but just before round 3 started I received the bad news that my test for measurable residual disease after the round 2 bone marrow biopsy was still positive, albeit at extremely low levels, so a stem cell transplant would be required instead of just the 4 rounds of chemo.
This has been the biggest setback since diagnosis and both my wife and I took the news quite badly. We’re now refocusing and trying to adapt to our new treatment plan. A transplant seems scary and it makes the length of the journey a lot more uncertain but I know it can be extremely effective and we are just trying to focus on the fact it’s the best route to cure for me.
I’ve finished three days of high dose cytarabine for round 3 and am now taking the 14 day cycle of midostaurin tablets, with blood counts currently falling very low as expected at this stage so will likely be in hospital another two weeks.
I have the first (virtual) appointment with the transplant centre in a couple of weeks and have been warned repeatedly to expect that to be a difficult conversation because of how honest and upfront they are about risks etc. But I hope that the meeting will help us understand the plan for that part of the journey and to know the next steps after round 4 finishes (which will likely be mid-late July).
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Welcome @MikeB you are in the right place!
My husband was diagnosed in October and didn’t get into remission with round 1 so he had to have FLAG IDA and FLAG. He had midostaurin in round 1 which did remove his FLT3 mutation but he does have another risky mutation alongside this. Round 2 did get him into remission but after round 3, biopsy showed he was MRD + albeit at a granular level. We did know after round 1 that he would need a transplant as he had refractory Acute myeloid leukaemia (AML).
He is on month 8 of treatment now and is doing well. He was meant to have a transplant in Feb or March but they delayed it until June to allow him to have 2 rounds of aza and venetoclax. His consultant said that this regime targets the Acute myeloid leukaemia (AML) in a different way and he was right. He is doing really well and we are getting ready for transplant. I share this only to hopefully reassure you that often the treatment plan changes and that you are not alone.
We did our consent for transplant in Feb and again last week. We had done a lot of reading online and so we didn’t feel the meeting as difficult as maybe his nurses had indicated it would be. The main aspects of our discussion was Graft-versus-host-disease and potential risks. The conversation did allow us to get our heads around what the next period of treatment and recovery will look like.
It sounds like you are doing amazingly with your treatment and your outlook. Take care of yourself!
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Thank you @Toadmum that’s really useful. It sounds like your husband has already been through some ups and downs but it sounds really encouraging that the doctors have always had a solution which has been successful and that he is able to make good progress towards the transplant.
That’s encouraging on the transplant meeting. I have only recently started reading up on the transplant as I didn’t want to do that until I knew it was likely to be happening and some of the materials (especially the Blood Cancer UK 7 steps booklet) have given me some reassurance while obviously making clear risks involved too.
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There are some regular posters on here that have had transplant with great success. @Muzza might be able to share his perspective which was really reassuring for my husband.
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Hi @MikeB feel free to ask for any advice on here. It’s a great forum and full of very helpful and supportive people.
The conversations around transplant are never great as they have to give you the worst case scenarios. I personally found it hard to get my head around and was definitely in two minds about it. When I asked them about what would happen if I decided against a transplant and they told me they would give me a maximum of two years, then making the decision to go ahead was a whole lot easier. 30 months post transplant it was definitely the right one.
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Hi @MikeB I am so glad that you have found us, welcome, and found reading posts useful.
Thanks so much for posting and I think I have found since the shock of my diagnosis, with another blood cancer, my thoughts and emotions have been on high alert.
I entered a world that spoke another language. It was like a rollercoaster that I could not get off.
I found a lot of waiting around and changes of plans.
I think yours and your wife’s feelings are completely natural.
Be very kind to yourselves and the Blood Cancer UK support line is there for you on 0808 2080 888. if you need it.
Please keep posting, you are never alone on here.
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Evening everyone. I hope you all had lovely long weekends. Mine was spent running a music festival in Hackney that my partner, some friends and I run every year. It was a great success but also a great break and distraction from dad’s health situation.
Unfortunately last Wednesday we were told there isn’t really any more treatment for dad that will get him into remission again and to be prepared for what could be a tough few months, culminating in the worst. For me it wasn’t really a surprise. I knew this would be the outcome if he relapsed. And to be honest it probably hasn’t hit home yet. It probably won’t until he starts to go downhill. It all feels quite surreal and in limbo right now.
I was worried mum hadn’t really taken it in, but she seems to be telling family and friends the real situation, so that’s good. Dad has gone into admin mode, which is his way of coping. I can relate. And am helping where I can.
I’ve read stories of people his age not surviving more than a few weeks after initial diagnosis, so I’m very glad that 17 months later we still have him. They have said that with his FLT3 mutation there is a drug called Gilteritinib that should prolong things a bit, combined with weekly blood transfusions. And we’ve been told to speak to one of his Clinical Nurse Specialists about putting an Urgent Care Plan in place.
For those going through treatment at the moment I don’t want this to scare you. My dad is 82. He could only have the milder chemotherapy of Azacitadine and Venetoclax the first time and because of his age the likelihood of relapse was very high. Anything else was too strong for him the first time, let alone now. In contrast I have a friend whose mum had Acute myeloid leukaemia (AML) in the early 90s and she’s still going strong.
I think that’s it for now. I’m preparing for a rollercoaster. And in the meantime am finding comfort in the podcast Griefcast, which is surprisingly funny. I guess laughter is one of our human ways of coping.
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Oh @Ilona I am so sorry and I expect you will all react to the news differently and in your own ways, there is no right or wrong way.
Yes, please do use all the help that is offered.
Your dads Clinical Nurse Specialist should be helpful
The Blood Cancer UK support line is there for you on 0808 2080 888
Also your forum gamily is here for you, please do keep posting, how you are.
Be very kind to yourselves.and look after yourselves
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