Grandad 85 year old just diagnosed with AML after visiting hospital with nose and mouth bleeding

[Sofi]

My 85 year old dad just got diagnosed this week. Monday he went to the hospital because he was hemorrhaging for the month and now we are running some more tests to see what treatment is right for him.

It is SO HARD! He does not know and we do not think as family he would cope well. Prefer for him to suspect but not know.

He can’t of course have chemo, but will start treatment week after next, once all exams are done. They say after the first cycle he might need to stay in, as he might be very weak. And that the first month is critical as 30% of patient do not make it…

He lives abroad. I want to fly out but my brother says this will make him suspect things are not well. I am stuck. Do not know what to do. How risky is the first month and the mortality rates. When would it be a good time to go. I speak to him several times a day….

Any tips, experiences with elderly Acute myeloid leukaemia (AML) patients, thoughts would be so welcome. Life expectancy? Lowest points? Treatments? All welcome

Thanks,

Sofi

[Duncan]

Hello there @Sofi, welcome to the forum. I’m really so sorry to read of your grandad’s health and diagnosis with Acute myeloid leukaemia (AML), that sounds really difficult to deal with, let alone from afar. It’s lovely that you’re here to support your grandad, and hopefully the forum can support you.

While I don’t live with Acute myeloid leukaemia (AML), I was diagnosed with a related blood cancer called Polycythaemia vera (PV) in 2023 which my specialists have said can progress to Acute myeloid leukaemia (AML). We here on the forum can’t offer medical advice, but you will find many people with lived experiences of Acute myeloid leukaemia (AML). If you use the search box at the top or Related Topics at the bottom I’m sure you’ll find others who have shared invaluable personal tips.

Perhaps you would like to read the Blood Cancer UK information about Acute myeloid leukaemia (AML) which includes treatments and practical support: Acute myeloid leukaemia (AML) - what it is, symptoms, tests, treatment, prognosis and support. | Blood Cancer UK

Might I suggest you speak with the lovely specialist Blood Cancer UK nurses on 0808 2080 888 for expert advice, including perhaps finding local support in the country where your grandad lives, in his preferred language. There might even be a similar blood cancer organisation where he lives.

Does your grandad have loved ones local to him who can help, perhaps with hospital appointments and lifts to and fro? I remember in the early days after my diagnosis there were so many appointments and anxious days waiting for test results. Lots to think about so I’d suggest keeping note of it all and sharing it with someone you trust to help share the understandable stress and worry a little.

Please keep us posted about how you and your grandad get on @Sofi, and do have a look around the forum.

[Duncan]

Oh I’m so sorry @Sofi, just rereading your post, is it your dad? It says both grandad and dad, but regardless the forum is here to support you both.

[Sofi]

Dear Duncan, thank you so much for taking the time to reply to my note and sorry to hear you have cancer too!

It is actually my dad who got diagnosed. I read the booklet you reference here and am thinking of flying out.

He is my dad too! And mu brother cant decide for me too!? I will find an excuse i think leftover holidays that i have to take until ens of month or something. My only concern is to ensure i do not put him at risk with any virus , but for this I might ask the nurses line you refer too. Hope this will not mind me calling them .

I fear once he start the treatment he might not make it because of his age and better to see him now that he is doing pretty ok- but bery tires….Ih had nothis stupid illeness beings so aggresuve in eldery people….

Yes my brither is in call and my kum too and they are taking gteta care if my dad!

Jow about you? what huves you joy these days ? And do you have a good support network?

Thnaks a lot!

[Duncan]

You’re very welcome @Sofi, I’m really sorry your dad and your family are experiencing this. Thank you for your kind words too, I am doing well, which can still feel surprising coming up to 3 years since diagnosis.

I’m glad that Acute myeloid leukaemia (AML) information helped you decide whether to travel to see your dad. As we tend to have weakened immune systems with blood cancer maybe bear that in mind when visiting. Unsure if there are masking rules at your dad’s hospital but I tend to wear a mask any time I go in for treatments to protect others who are also vulnerable.

Perhaps in advance of your visit you and your family could write notes of anything that you want to ask your dad’s doctors, about his treatment options, how best you can support him… You might find his nurses have some great practical advice, that’s been my experience with my nurses when I see them.

I’d also say for you to prepare yourself for how difficult it can be to see a loved one in hospital. Sometimes I forget what I can tolerate in hospital, but for my spouse and other loved ones it can be difficult seeing it.

As for what brings me joy, well hard as it is to imagine but I am really happy to be able to live with this blood cancer. I adopted a dog last year who also brings me joy, and sometimes irritation!

Take care @Sofi and do consider calling the BCUK nurses on the number above, they can advise about ways to support your dad.

[Sofi]

Hello Duncan, I will call the nurses tomorrow and get their views too, I do not want to be the one impacting by dad’s weak health.

I do not understand the treatment, my mum said he will so injections and pill possibly the first week, then pause for 2-3 days and possibly after the first week he will need to ho in as he will be vet weak.

But i winder is it possible that his body died nit react well after the initial couple of days?

And from the time he still has keft what quality of life would he have….? And the pain? And will he suspect things arr serious if i go back home with an excuse?

I read some stats on morbidity rates and Early death …. and numbers in the nhs site are very poor for 85 year olds.

Of course the mask wearing from my side is the leSt i can do. ….

Di you always wear a mask when uou are-out and about or only when u go in for your treatment? Is it chemotherapy that you do? Three years post giagnosis sounds like you are fighting well!

I pondered about getting a pet for my dad , as pets calm you down, but am sure my mum woukd think I am out if my mind.

May i ask how old are you?

Assuming i will fly early next week, how shoukd i behave with my dad …. ? As normal? When he was at ghe hospital at the beginning if the week ( he was in for four days) he told me there is no need for me to fly back - I am ansokutely fine now he sId. if things were not good, I would hVe told you to cone…..

Sorry, I am back and forth with all my feelings Nd thoughts? What to di what not to do what is the best for my dad!

Thanks for listening and not judging!

[Duncan]

That’s great @Sofi, I am sure the BCUK nurses will offer great advice. I just thought, they will next be back on Monday to take calls. Perhaps you could put your queries into an email to them first? They can be emailed at support@bloodcancer.org.uk. The forum is here all weekend, of course.

To be honest, from what I understand from others around the forum living with Acute myeloid leukaemia (AML), treatment will be unique to each person. It’s similar with people who have Polycythaemia vera (PV) like me, we all have treatment tailored to what our blood cells are doing. Lots of blood testing, and many options for medicine. It’s no wonder the treatment your dad is having is hard to understand, blood cancer is complex stuff.

It sounds like your dad is already under the care of blood cancer experts and in hospital so he should be well supervised and his treatment can change quickly if needed, depending on how his body responds. He’s in the best place to keep him safe right now, I’d say. Perhaps that could feel a little like relief for you.

As for masking, I tend to wear them like I used to during the pandemic, so in busy indoor places like supermarkets, public transport without air conditioning, hospitals, cinemas, those sorts of places. If I’m outside I don’t wear a mask, unless I’m standing in a crowd that’s not moving for ages like at outdoors concerts. And if I’m around people who are coughing and sniffling then I just put my mask on. I have never had COVID-19! I honestly think I’ve been lucky and careful and I’m fortunate to only need ‘mild’ chemotherapy in capsule form so I can live pretty normally.

While I am not a doctor, I’d say please hold out hope that your dad will have treatment options that can help him. Personally I would not look at prognosis types of online statistics as they are notoriously inaccurate—when I checked my own prognosis with Dr Google it said 5 years! Totally wrong, thank goodness.

I’ll end by saying I am sure you will know how to behave with your dad and what to do. Be yourself, try to enjoy your visit, and I bet you’ll gain lots of new information seeing your dad and his doctors, which will no doubt help.

[DuncanB]

Hi @Sofi Welcome to the forum.

I’m so sorry to hear your Dad has been diagnosed with Acute myeloid leukaemia (AML).

My primary diagnosis was Myelofibrosis which progressed to Acute myeloid leukaemia (AML).

A diagnosis always comes as a shock. I went from having what I thought was a routine GP appointment to being told I might have Myelofibrosis within about 8 hours.

The good thing is that they tend to move quickly to treatment once they have a diagnosis.

Being in hospital for first cycle of treatments very common as they want to closely monitor you and see how you react even if it’s just oral medication or injections.

Gives patient and family piece of mind.

My suggestion is that you’re guided by the clinical team looking after your Dad as they will be best placed to guide you.

[Sofi]

Blessed Sunday Duncan!

Dad is out of hospital and told by my mum and brother in his age they tend to do outpatient treatment only.

Saying this they say after the first cycle he will be the most weak and might need hospitalisation.

Distance does not help! Being able to ask questions and listen too.

Just spoke with my mum who also does not think makes any sense for me to flight back home. What is the point in you coming here - so it is three of us going to the hospital. And i need no help! And i do not need all the tearful people calling me like your auntie and one of my best friends….

I will draft an email to the nurses with my questions. Last flight in the in at 22:30. So plenty of flights to catch .

Wow- how lucky and careful too not to catch covid! Bette be safe than sorry! And so far this approach has kept you safe!

I only searched in nhs and .org sites as these are the only ones to ‘trust’

Thank you ever so much for listening and for writing back to me a stranger to you!