Hi I'm new to this, was diagnosed with aml in November 2020. Diagnosis came out of the blue, not many symptoms, a little tired and tickly cough kept being told by the doctors to wait a few weeks to see if it would clear up. By chance had a small amount of black mould appear on bedroom wall so contacted doctors to see if they thought it could be causing cough, said it was worth looking into so had blood tests. Woken up following morning at 6.30 to be told I needed to get myself to hospital, from then on my feet didn't touch the ground.
Two rounds of induction chemo and one round of consolidation chemo, couldn't have the last treatment because of a fungal lung infection. I've been in remission from first treatment and having regular blood tests.
Having monthly venesection because of high ferritin levels.
Just need to touch base with people who understand the journey blood cancer takes you on, living with the after can sometimes feel harder than the treatment.
Hi Cristabel and 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 Acute Myeloid Leukaemia (AML) but I was diagnosed way back in 1999 with a rare, incurable but treatable type of NHL reaching Stage 4a in late 2013 so although my Blood Cancer ‘type’ is different I do appreciate the journey rather well.
Let’s look for group members 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.
It’s a challenging time for you so you may want to use the Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 or via Webchat and Email too. This service provide cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear. We also have our Ask an Expert section but do allow a few working days for a reply.
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 most are online at the moment….. the one I attend does have a person with AML in it so worth checking.
Always around to help more or just to chat
Let’s look for anyone with some Experian’s to come along and help you unpack your diagnosis.
Having a Stem Cell Transplant (SCT) is reserved for a time where all options have been used…… I have had two Allo (donor) SCTs as back in late 2013 all my options had been used up…… but in the last 10 years a few new treatments have come n line so I now have a fallback now.
Do have a look at the various support platforms where you can ‘talk’ as this helps a lot.
