Dad has secondary AML from CMML and starting treatment

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I’m Harriet, 32, my 65 year old father Julian is about to be admitted into hospital for many weeks to start intensive chemotherapy treatment.

He was diagnosed with Acute myeloid leukaemia ('AML') yesterday, genetic mutations are tbc. Diagnosed with Chronic myelomonocytic leukaemia ('CMML') and mastocytosis last year which worsens things.

It’s suddenly moving really quickly and I’m worried about all the changes that will come, as well as dealing with uncertainty. I’ve reached out for support via charities as well as this forum.

I’m on a career break anyway so I have flexibility to help. How can I help? What can I expect? How do I look forwards when it only feels doable to deal with today? I was going to return to work in September but I don’t know how to plan for the future now, we don’t know how things will go. Thank you

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Hello there @Harrietsauce, welcome to the forum at this difficult time. It’s really lovely that you’re here to support your father. I’m so sorry to read of his Chronic myelomonocytic leukaemia ('CMML') then Acute myeloid leukaemia ('AML') diagnoses, what a lot to deal with in a short amount of time.

I’m sure you’ve got plenty to read right now, but I’d say this Blood Cancer UK information about Acute myeloid leukaemia ('AML') is really great and links to many further resources: Acute myeloid leukaemia (AML) - what it is, symptoms, tests, treatment, prognosis and support. | Blood Cancer UK

You’ve likely heard of Leukaemia Care, and here is their in-depth information about Acute myeloid leukaemia ('AML'): Acute Myeloid Leukaemia (AML) | Symptoms and Treatment | Leukaemia Care - Leukaemia Care

If you’d like more information about therapy, counselling and support groups, aside from Mind, Macmillan has put together this: Talking therapy, counselling and support groups for cancer | Macmillan Cancer Support

You’ve likely heard of Maggie’s and their amazing centres and services, but do take a look as there may be one near you to pop into for further resources: https://www.maggies.org

And may I just say, you and your father are not alone in experiencing Acute myeloid leukaemia ('AML'), nor his previous (additional?) diagnosis of Chronic myelomonocytic leukaemia ('CMML'). I know of many lovely forum members who are here talking about living with Chronic myelomonocytic leukaemia ('CMML') and their experiences of Acute myeloid leukaemia ('AML'). It’s pretty inspiring.

Your flexibility itself I’d say will be a truly great help as your father will likely have many appointments and, speaking for myself, I love it when my other half goes with me for hospital stuff, especially soon after my diagnosis with Polycythaemia vera ('PV'). I bet your dad will appreciate your company.

Again from experience, if you’re squeamish then there will be a lot of talk of blood cells, lots of injections, and intravenous medicine and it honestly took me a while to acclimatise! Something to bear in mind.

But keep supporting your father in ways you know will be meaningful, and dare I say it sometimes a bit of humour can help too. You know your father best. Remember to take breaks for your self-care too.

I’m sure others will respond as well @Harrietsauce, I hope treatment starts really well for your father. Do keep looking around the forum using the search box at the top using terms like Acute myeloid leukaemia ('AML') and you’ll find further support.

Do please keep us posted.

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Hi @Harrietsauce and a warm welcome to the forum.

I see that the lovely @Duncan has shared lots of links to resources.

I’m sorry to read about your Dad’s changed diagnosis. I understand how that feels. I was diagnosed with Myelofibrosis which moved to Acute myeloid leukaemia ('AML') a few months later.

When my condition progressed to Acute myeloid leukaemia ('AML') I was admitted within 6 days for intensive chemotherapy.

Haematology teams tend to move quickly with Acute myeloid leukaemia ('AML').

What can you do to help is to visit him as much as you can. Accept there’s things you and your Dad can influence and an awful lot you can’t control.

What you can expect from my experience is a rollercoaster. Good and not so good days. Just be reassured that the Haematology Teams have protocols for everything.

Just live in the present as much as you can.

Hope that helps and take care.

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Hi @Harrietsauce

Welcome to our forum although I am sorry for the reasons that have brought you here and to read of your dads transformation to Acute myeloid leukaemia ('AML'). This is such a difficult time for you all.

It is really hard when things move so quickly and you have no time to process what is going on. Like @DuncanB has already said, in haematology when people need intensive treatment things move very quickly as it is important to get treatment started as soon as possible.

The next few weeks and months will be challenging and I would suggest taking things day by day. That you are there to help your dad will be an enormous help and comfort to him. Maybe bringing in food and drinks that he likes and being his advocate will really help him. I have enclosed some information here which might be useful to read supporting a loved one through treatment

Do not be afraid to reach out to your dads team for information and updates and please do not hesitant to contact our dedicated nursing line if you would like to talk things through or we can support you in any way on 0808 2080 888 option 1

We are all here for you.

Kindest regards

Fiona (support services nurse)

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