Acute AML

Hi Sooz0501 welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various blood cancer groups.

I don’t have AML but was diagnosed in 1999 with a rare, incurable but treatable type of Skin NHL (CTCL) Stage 4a so although my blood cancer ‘type’ is different I know this journey rather well. (Hit my community name to see my long story)

More importantly I have had two Allo (donor) Stem Cell Transplants (SCT) (June 2013 then Oct 2015) so I know this specific journey very very well.

I suggest you come over and join our dedicated Stem cell transplant group, put up a post as you will connect with folks who have walked the walk including a few folks with AML.

I will keep an eye open for you in the SCT group.

Thanks Mike i will check out that group. 

Hello

please don’t be terrified, you’ll find your body and mind are stronger than you think. I was 1st diagnosed with AML back in May 2015 and had 3 out of the 4 standard chemo sessions. I just couldn’t mentally take the 4th one. I went into remission but Feb 2018 the little bugger decided to raise its head again. Thank god for bone marrow samples. I know it’s really unpleasant having a thick needle pushed into your hip but it allows for long range diagnosis. You’ll get used to them.

I had a donor for my transplant and had my transplant at kings college hospital in June that year. The transplant was so quick and easy. It took less than 30 mins. After that all you do is stay in hospital until your new blood is created. It takes weeks but time flies as you’ll spend a lot of time asleep. Make sure you eat as much as you can, especially fatty foods. You’ll loose a lot of weight. It will come back eventually. Stay away from alcohol for at least 100 days as your liver is having enough trouble filtering out the  chemo in your body, it doesn’t need extra work. Drink lots of water.

Rest/sleep and food is so important. I had 10 months off work before going back, however after working for 4-5 months I decided to retire early, I was 51(2019) at that point. I am fortunate enough to be able to do this. You will likely pick up various virus’s/ailments along the way. Your regular blood tests are brilliant at revealing these nice and early. I managed to get pneumonia 5 times in 5 months but was A symptom matic ( showed no external signs). I just sat in hospital for 3 weeks at a time until my lungs recovered. I am well at present but know my limitations. I get exhausted by most things. I like to have a late morning snooze for 2hrs and another 2hrs in the afternoon. I have to have at least one of them which means I’m a bit of a party pooper if my family want to do anything for a whole day.

You will need your family and friends but you need to set down the law with them. You are extremely vulnerable and they need to know that. People with colds/flu are a no no. Obviously covid is extremely dangerous for us. When you have your transplant all of your previous vaccines will be wiped out. You’ll have to wait 12-18 months before you have them, so watch out for chicken poxs, mumps and measles. You’ll also need a tetanus jab and then all of the covid jabs.

There is so much more I can tell you but then I’d go on and on for pages. However here are the best tips I found.

If once at home you feel Ill, ring your haematology department (have them on speed dial). They will likely want you to admit yourself to their hospital. If your not able to get there yourself then get an ambulance. Don’t wait till you get worse.

When you pitch up at hospital by your own means, the best way to bypass the crowds and get out onto a private room is to state that your neutropenic ( it means you have little or no immunity system) It works wonders. You might not get to see a doctor any quicker but it gets you away from the crowds and allows you to rest.

Night time observations. Hospitals think it’s great to wake you during the night to check your blood pressure etc. Usually 1-2am.  When your are NOT neutropenic there is no need for this and I used to tell the nurses not to disturb me. You need undisturbed sleep as they’ll start there morning rounds just after 6am

What your going through and will go through isn’t pleasant. The sickness and diarrhoea can be awful but strangely your body can’t recall your discomfort/pain after it has happened.

Lastly you’ll meet many people who will claim they know what you are going through. Our cancer affects the whole body, all of it. Other cancers affect only limited parts of the body. Only a AML patient knows what it’s like. We are all different, some have it bad, some have it good. I wish I could speak to you to put your mind at rest.

Thanks Kings patient, that’s very helpful. I was wondering about the immunisations ie how long before having them. I wish I could fast forward a few months! I’m having the transplant at Cambridge Addenbrooks I had only moved to Cambridgeshire from Kent literally a week before diagnosis. I had to move house whilst feeling unwell, which I had antibiotics for a chest infection! The NHS has been amazing dealing with my leukemia alongside a stroke!

I’m so pleased to hear that you got through it all!