Urgent advice - AML in adults

[AMLadvice]

Posting here for traffic as health boards are fairly quiet.
Does anyone have any experience with acute myeloid leukaemia in adults? DH best friend (I'm also good friends with him) just diagnosed. Just trying to get some info on prognosis etc. Worried sick. DH on way back from hospital. He is beside himself.

Am very sorry to hear that.
Have experience of it in my own family. Unfortunately it was too late for any treatment. A bone marrow transplant was very briefly considered but the person was too ill.
Thinking of you all.

My grandmother was diagnosed with this, sadly her illness was diagnosed too late for treatment to help. But I understand treatment has come on in the years since her illness.

Don't Google. You probably will I know, but it won't do you any good just now. Take care of yourselves

Thank you for your replies. I am not sure how long he has had it. He went in to hospital today. He is so scared

Sadly my experiences aren't good but I think there's lots of different factors which make a difference.

I have two friends who had it at the same time. One died, the other is still here.

My experience is not positive, we just lost my MIL, 10 days from diagnosis to death however hers had progressed from CMML and I believe if it is the first diagnosis the prognosis is better when dealt with quickly. I believe a strong course of chemo is delivered in the hope it will send the cancer into remission. A bone marrow transplant may also be an option.

I think it depends very much on the age of the adult and how quickly it's diagnosed. A close friend has just died of AML. She was 77, and had felt v tired for a couple of years but put it down to old age. A younger person might have gone to the GP earlier and might be in better shape to survive chemo/transplant.

I hope things go better for your friend. I will say that, as far as dying from cancer goes, it was a v gentle end. She had transfusions and was able to enjoy her last weeks, until she caught an infection and faded away peacefully in a matter of days.

Prognosis and treatment is hugely variable depending on many factors such as the age of the patient right down to the genetic code contained within the leukaemia cells. The treatment is tough but it is potentially curable. The best place to find more information on this is on the macmillan website
www.macmillan.org.uk/information-and-support/leukaemia/leukaemia-acute-myeloid/understanding-cancer
Hope all goes well for your friend.

I know someone who had it, she was 60 when she was diagnosed. The treatment was incredibly tough. After the chemo she had a bone marrow transplant from her sister, a new one where the tissue doesn't have to be an exact match. 7 years on and she's still here, fingers crossed she will be for a long time yet. She was very lucky her sister was enough of a match as they wouldn't have used stranger donor bone marrow due to her age.

She had been mysteriously susceptible to bugs for a couple of years beforehand - pneumonia a couple of times, always got colds badly etc. I'm not exactly sure what made them test for leukaemia in the end, but she was whipped into hospital quick smart, it was quite a shock.

I hope your friend is ok - as you can see it's a vicious disease, treatment and recovery are long and hard, and sadly many people die from it.

Have some experience, hospital will start treatment very quickly. If he responds well to first phase of treatment (ten days) then will have much better prognosis. Loads of research going on and clinical trials.

The cancer research website has good information on CML. to you

My friend was diagnosed at 29 after thinking she had the 'flu. She had 5 rounds of chemo and a month after the last round it was back. She was offered further treatment but with a low chance of success - she opted not to have it. She died less than year after diagnosis.

Sorry for the bleak outlook but my understanding is that it is one of the worst types of leukemia for adults and if initial chemo doesn't work then all that's really left is a bone marrow transplant and chances of a match are not great.
Many friends and family of my friend were tested and none were a good enough match.

Treatment and prognosis for AML has increased greatly over the years since I first began Oncology nursing. I think when people are first diagnosed they usually have a prolonged period of hospitalisation and intensive chemo to get them into remission, then for many a bone marrow transplant will be scheduled as long as a match can be found. The risks of course are that they are terribly susceptible to infection. I have recently known people end up in intensive care for weeks, the treatment is gruelling.

Will second that it was a very gentle end, blood transfusions kept her reasonably 'well' for a month or so and she was able to do some of her bucket-list things. As she got more poorly her care was focused on pain relief and keeping her comfortable and she died peacefully after just a few days in hospital.

My friend died of this 3 years ago unfortunately.

6 months in hospital and then too sick for a bone marrow transplant.

Hopefully your friend will fare better OP.

@Babyroobs yes that's one of the reasons my friend refused further treatment after the first 5 rounds of chemo failed - she had pneumonia twice and various other horrible side-effects and infections from treatment and she felt it just was not worth it for such a small chance at success second time around.

It hits the 'victim' like a train. It's also extremely gruelling treatment they have to endure.

My relative literally had days to live, by the time they found out. However, he went into remission whilst in hospital having the initial treatment.

His consultant told us it was 50/50 whether he'd come through it.

He relapsed a few months later, and they treated him slightly different, for a longer period of time, and he's in remission again.

He has to have regular bone marrow biopsies (which is how they picked the relapse up so quickly) for at least 3 years from remission.

If he does relapse again, they'll look into bone marrow transplant.

Just one thing; don't underestimate the effect of their mental health. The Macmillan nurses are amazing and so very supportive, so use them when needed.

Lots of luck.

I see quite a lot of people with leukemia in the course of my work. The vast majority of them have just felt like they had the flu or a cold then the next minute they are in hospital having intensive chemotherapy. The shock of it all is enormous, and their lives are completely turned upside down.

It makes you realise how important blood is when you lose the ability to make your own. Everything goes wrong very quickly. There comes a stage when a transfusion lasts for such a short time that it really isn't viable to keep giving them. It's a very difficult moment for the patient and those caring for them.

My friend wasn't in pain, just very very weak. I could hear the difference in her voice on the phone, pre and post transfusions. She died in her sleep within 36 hours of being taken into a hospice.

Any more news, Op, about your friend? How old is he and is there a possibility of treatment?