Hi everyone,
I’m new here and just wanted to share our situation and hopefully connect with others who understand this better than we do.
My dad was diagnosed with AML just 2 days ago. He initially went into A&E after losing his voice and having quite severe throat pain. They put it down as a viral infection, but routine blood tests flagged something abnormal, and we were then told it was AML. He has since had a bone marrow biopsy and we are currently waiting for the full results.
This has come as a huge shock to our family. He only finished treatment for laryngeal cancer at the end of last year, after a minor surgery followed by 6 weeks of radiotherapy, and we were told he had the all clear. We are struggling to understand everything, but there is a worry that the previous radiotherapy may have contributed to the AML, although we know we don’t have answers yet. We’re frustrated that since his treatment finished last year, no follow up bloods were done.
He is 64 and, up until this point, had been recovering really well. He coped very well with his previous cancer treatment and has been in good health since finishing radiotherapy.
One thing we are confused and anxious about is the treatment timeline. The consultant has said they don’t want to rush into starting treatment until the biopsy results are back, as they don’t feel that starting immediately versus waiting a short time will make a difference. However, we have read a lot of stories where treatment seems to start urgently and very quickly after diagnosis, so we are feeling unsure and worried about this approach.
We just want to make sure we are doing the right thing for him and not missing a window where treatment should be started sooner.
If anyone has been through something similar or can share their experience with the timing of treatment after diagnosis, we would really appreciate it.
Thank you for reading.
Hi Bigheartlittleheart and welcome to this corner of the Community although I am sorry to hear about your dad.
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.
Blood cancers are very complicated and having a clear indication as to how his AML is presenting is very important…… the BMB result will confirm the best possible treatment approach…. and stop the possibilities of treating him incorrectly…. yes that can happen……. Back 1999 it took a a full year and 6 biopsies to get a clear diagnosis…… thankfully things have improved over the years but in Oct 2013 it still took 8 weeks before I started treatment as my second type of NHL was rather rare….. but I am still here all these years later.
Let’s look for group members to pick up on your post and get back to you with their first hand experiences.
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))
