Hi Smurf and welcome to this corner of the Community although I am sorry to hear about your dad’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.
Let’s look for group members to pick up on your post and get back to you.
Tell us a little about your dad….. how old is he? how long is it since he was diagnosed?…… has he started treatment?……. where is he being treated?
As always the Macmillan Support Line is open 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/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 and most centres do run monthly Heamatology Support Groups and the one I attend does have a few people with AML in it so worth checking.
Always around to help more or just to chat ((hugs))
So sorry you have been threw all of that .
my dad is 80 & was diagnosed in oct last Yr he was covered in great big wat we thought were big blisters .Hes being treated at linclon & had to fight for his chemo as it wasnt in his bone marrow apparently with his age and such a rare form they didn't think it was wise but we won finally after 3 appeals .But I just feel did we make a mistake
Hi again Smurf although I have had a long and challenging journey I am over 10 years out from my last treatment and doing great.
This does indeed sound like a very unusual type of AML as I have not seen it mentioned in this group over the years I have been volunteering on the community….. but let’s look for any group members have lived experience……. Do remember to use the resources of Leukaemia Care UK
Was pushing for the chemo the correct decision?…… the proof is in the results….. my treatment back in late 2013 to 2015 was all a punt and a last roll of the dice.
How is your dad doing now?
