Hi All,
my 30 year old fit and healthy son was diagnosed with Leukaemia on Saturday 08/08/26 informed he has AML at Lister hospital Stevenage. Came home on the Sunday got 2 nights at home then called to UCLH Grafton Centre London was told yesterday that he has TP53 mutation and that the outcome was poor. This news floored us both. They said he could have intermediate treatment he may get 6-12 months. Do nothing he may have weeks. They won’t do bone marrow transplant due to the mutation as it is to risky but he could go to another hospital that may do it or possibly get on a trial at kings.
he is being so strong and said well I knew I would not have a straight forward time. To top it all off he also has a 1cm berry brain aneurysm picked up on CT. Life really is cruel he had bloods done when he left the army after 12 years in September last year no issues with the bloods then.
he wants to get on the trial at Kings he is ready to fight as long as he can.
I have to remain strong for him.
Hi TracyL and welcome to this corner of the Community although I am sorry to hear about your son’s diagnosis.
I am Mike and I keep an eye on our various Blood Cancer groups.
I don’t have Acute Myeloid Leukaemia (AML) but I have been on my journey since 1999 when at 43 I was diagnosed with my first rare (8 in a million) incurable but treatable type of Cutaneous T-Cell Non Hodgkin’s Lymphoma (NHL)……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL was then presenting.
So although my Blood Cancer ‘type’ is different I most definitely appreciate the challenges of this journey rather well…… (I also have Asbestosis and Prostate Cancer)…. in my book there is always hope….. unlike hope runs out.
Back In 1999 the then median survival rate for my first type of Lymphoma was 3-5 years…. I turned 70 last Nov….. keep the faith that a route forward can be found.
There are a few active group members so let’s look for then to pick up on your post and get back to you.
You can also click on the main ‘AML Group’ title and this will bring up all the group posts. Have a look at the posts and as always you can hit reply to any post and connect in with the wider group conversations.
As always the Macmillan Support Line is open between 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00…… this service provides cancer information, practical information, emotional support, benefits and financial guidance or just a listening ear.
For good information do check out Leukaemia Care UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 08088 010 444
You may also want to check to see if you have a Maggie's Centre in your area as these folks are amazing.
Always around to help more or just to chat.
