AML diagnosis

Hello, my husband was diagnosed in February this year with Acute myeloid leukaemia (AML), his mutations are hard to treat and his induction chemotherapy did nothing, he has since had multiple infections, temperature spikes and I just have such a bleak feeling. His white cells are so high,
They say his only chance is a different round of hard chemo followed quickly by stem cell transplant if he goes into remission.
He was at his diagnosis offered less invasive treatment but he wanted a chance of recovery.

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Hi @Gilly welcome and you show so well that it is not just the patient that is affected in a diagnosis but their family as well.
Perhaps both of you write down your fears, questions and practicalities to ask at your husbands next appointment
I attach the Blood Cancer UK website details on Acute myeloid leukaemia (AML). The Blood Cancer UK support line number is 0808 2080 2080
Acute myeloid leukaemia (AML) - what is it, symptoms, treatment and prognosis | Blood Cancer UK
Hopefully others will share their experiences but remember that we are all special, individuals with our own unique medical histories and today treatment options are very targeted to individuals.
Please do not underestimate the emotional toll on both of you and you might deal with things very differently , be kind to yourselves and please do keep posting.

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Hi @Gilly and welcome to the forum.
@Erica has given great advice and useful information.
It’s sounds like a really difficult time for you all. It’s all still so new but things are moving so fast and it must be hard to find a moment to catch your breath.
I hope you find the forum a support. Hopefully others will be able to share their experiences of treatment.
Please keep posting. There is always somebody to listen and if you need to talk, remember the helpline is there for you to.
Please keep us updated on how things are going.
Sending lots of love x

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Welcome @Gilly!

My husband was diagnosed with Acute myeloid leukaemia (AML) at the end of October 2023. What a shock and terrifying diagnosis.

He has two hard to treat mutations and he did not go into remission in the first round of chemo so he went onto have FLAG-IDA , followed by a round of FLAG. The first flag IDA did work to put him into ‘remission’ but he does need a stem cell transplant for best chances of long term success.

I have posted along the journey on this site, sometimes daily. It has been a godsend to me.

All of the feelings you have mentioned, I have felt. Bleak is a really good way to describe it but angry, out of control, sad, emotional, confused, inspired, lucky, have all been felt, sometimes multiple feelings in one go.

Every feeling is valid, and as the months go along, I have found it easier to allow the feelings to come and go without attaching weight to them. You are doing a marvellous job, and I hope you will keep posting to let us know how both of you are getting on.

Acute myeloid leukaemia (AML) is such an awful thing to happen to anyone. Allow it to rip up your own rule book on how you feel and how you do things. It has really opened my eyes to a lot of things including what is important at the end of the day.

How is he getting on from the infections? Hope he is recovering well. Take care of yourself & I will be thinking of you! Big hugs. Xx

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Hello, My husband has Acute myeloid leukaemia (AML) and has just completed his second round of chemotherapy after failure to get into remission . We have had many ups and downs as expected our second course of treatment was not funded by the NHS so we had to pay. Today he had his bone marrow aspiration but a sample could not be obtained so it was a dry test like the first one where remission was not reached. He has been in hospital now for nine weeks. Has anyone had anything similar.

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Hi @Gilly.
Wow, it’s sounds like you have had a tough journey to get where you are today. I’m hoping that others will be able to share their experiences with you. How are you doing?

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I’m ok I think, I am not a very optimistic person and I read into things said by consultants, then worry myself silly. My husband takes one day at a time, something I find hard to do. He has coped so well with all his treatments bless him. It’s hard at night when I have time to dwell on things, we have three wonderful daughters and six grandchildren who support us both. I just want him home.

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It must so tough for you all. I completely understand reading in to things the consultant has said, especially at night when I know my mind goes in to overdrive! Also, I know I always think of things to ask once the consultation is over. When will you get another chance to ask any questions?
I’m glad you have your family so you can support each other X

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Oh @Gilly I am sorry to hear that your husband is going through such a tough journey and a long time in hospital.
You seem to have a good insight into yourself and I know it so well.
As it says in the song the darkest hour really is just before dawn.
It must be a lonely time for you.
Please do use your forum family.
Really look after yourself as well as you look after your husband and please do keep posting.

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Hi @Gilly I wanted to reach out because you asked if anyone was going through something similar.

I am sorry to hear you and your husband are going through a tough time.

I have Acute myeloid leukaemia (AML) with a rare and resistant mutation. I had a course of Flagida that didn’t get me into remission. My hospital then applied for funding for another drug as it wasn’t funded on the NHS but sadly my recent bone marrow biopsy has showed it didn’t work and the blasts have infact worsened. Do you mind me asking what chemo regime your husband has been on and what mutations he has?

I am starting MAC conditioning chemo very soon and will be having a Haplo transplant despite not being in remission as it’s the only thing left (a low chance of being cured, but a chance nonetheless!) could this be an option for your husband too?

Everything you are feeling is completely understandable. I hope you are trying to look after yourself where you can. Sending lots of strength and love x

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Hello betterdaysahead , my husband was diagnosed in February and started his chemotherapy journey with CPX, three lots over five days which he tolerated well.
Before his bone marrow aspiration his white cell count went through the roof but they were all blasts unfortunately.
The second round was Cladribine for five days, which we paid for. We are now waiting for bone marrow results.
His mutations are SRSF2. SETB1
I will pray your stem cell goes well, bless you.

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Thank you @Gilly. I was wondering if we perhaps had the same mutations due to the resistance, but mine are different. I know there are so many variations of Acute myeloid leukaemia (AML).

Praying you have good news on the biopsy results, I hope the wait isn’t too long x

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