Hello

Hi Jai  and welcome to this corner of the Community although I am sorry to see you joining us.

I am Mike and I help out around our various Blood Cancer groups.

I don’t have Acute Myeloid Leukaemia (AML) but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of T-Cell Non Hodgkin's Lymphoma reaching Stage 4a in late 2013 when a second more rare type of T-Cell Non Hodgkin’s Lymphoma appeared so although my Blood Cancer ‘type’ is different I appreciate the cancer journey rather well.

You have certainly had a rough time and so am ever so sorry to hear about your mum and your dad…… 

I can certainly see why you did your best to move on but your AML diagnosis is an unfortunate hurdle.

Let’s look for sone group members to pick up on your post.

As always the Macmillan Support Line is open from 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 where you can talk with someone about specific cancer and practical information, get emotional support, benefits and financial guidance or just connect with a listening ear. 

Talking to people ‘face to face’ can be very helpful so do check to see if you have any Local Support in your area, do also check for a local Maggie's Centre as these folks provide amazing support and the Heamatology Support Group I attend at our Maggie’s have a few folks with AML

For good information do check out Leukaemia Care UK who produce very good information and run various support platforms….. including their Buddy Scheme where you can be connected with someone you can chat with……. they also have a Support Line on 08088 010 444

.….. and this group is always around to give support.

Thank you. Your message is very much appreciated. I’m sorry to hear about your diagnoses, and the long journey it has been for you. It’s good to know there are support avenues available especially on the bad days. Each day has been different for me, I have the good and bad days. Wishing and praying for more good ones for everyone going through this. Thank you

From my prospective it’s all about celebrating the good days and enduring the not so good days.

I am now 10.5 years out from my last treatments, I turn d 70 back in Nov and living as good a life as any healthy 70 year old can be living.

Do follow up on the connection routes as it’s important not to walk this in isolation regardless if it’s a good day or not so good day.

Hello Jai,

Firstly, i am very sorry to hear of your sad losses and the cruel situation regarding the burglery.

The AML diagnosis is very sad for you too.

I was diagnosed with it in April 2025 and was treated very swiftly. Luckily I am now in remission.

I hope you got a fairly quick diagnosis and that you get swift treatment.

If you feel like you want to talk then feel free to message as I would like to help where poss.

Best of luck.

Hi, thank you.

it all happened very quickly. Once the bone marrow results came through, I was told on a Thursday afternoon and admitted the following Tuesday evening. Nothing happened on Wednesday as pharmacy didn’t have the treatment ready earlier in the day. I feel there are lots of unknowns as when you ask a doctor, the answer usually is that it depends. I understand that but leaves me with anxiety. 

Hello,

It seems a bit up in the air to you I suspect.

I felt the same way. It usually takes a few weeks from my experience for the full results of the biopsy to come back.

There are quite a lot of mutations with AML from what I can gather so the Drs need to know the exact ones to do a full treatment plan.

I hope this helps. It all seems a bit confusing at the start but things seem to become much clearer once treatment begins.

Have you started any preliminary treatment if you don't mind me asking?

I have 6% blasts with mutation of NPM1. I’m on a 7 day chemo regiment. Today is day 6. I keep getting temperatures so getting to get a chest x-ray today. I get nauseous so it’s been hard to eat or drinks. 

Well that seems very similar to mine.

I had 86%  blasts and NPM1 so you may end up on the same treatment plan as mine.

This sounds to me to be encouraging. 

One thing I found helped was drinking plenty of water. I was nauseous too and I know that is awful.

They will surely  give you plenty of meds for temp and any chest infections.

From what you say it sounds like you are doimg well. 

Obviously I am only a patient and not a Dr but it seems the percentage of blasts give some indication of the level of the disease. So yours looks good if that is the case.

I hope this helps.

Good luck. My thoughts are with you.

Thank you, that is very helpful. 

when you had your induction, was it a 7 day chemo regiment with a 30 day stay in hospital? What happened after you finished the round of chemo? What sort of effects should I expect?

it’s been a pleasure chatting with you. Hope you don't mind if I have any questions later?

Thank you

Hello Jai,

Firstly, please don't worry about asking any questions whatever they may be. I only want to help and share my experiences.

Yes I recall it was but I was in for 35 days. 

Well we all have different effects from chemo and they are not all the same re side effects.

My ones were hair loss which was pretty much everywhere, nausea and sickness, rapid weight loss. Muscle wastage. Constipation. Slight numbing in toes. Brain fog and teariness. 

I probably had some other small issues but nothing significant.

Once your immune system is destroyed by the chemo you will be at high risk of infection. So it is critical to follow the rules on infection control. 

I was told that in time things should all return to normal. Luckily for me they seem to have done.

If you don't mind me asking are you in the UK?

I hope this helps you.

Regards