Hello,
This is my first time posting and indeed joining any forum as I suppose up until now things have been a bit of a whirlwind.
I was diagnosed with AML with KMT2A mutation in July. I spent 5 weeks in hospital including most of the first round of chemotherapy. I got very ill at one stage and had to go to ITU for a week. At the end of round one I was in flow remission.
Tonight, I finish round 2 at home and I'm straight into round 3 tomorrow including my first IT chemo which I'm very nervous about!
A stem cell transplant is on the cards, which also I found very daunting.
I hope you are all well, and fighting this awful disease hard. My best wishes go to each and every one of us.
Hi AeroengAML and welcome from me to this corner of the Community although I am sorry to hear about your AML 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)….
As for Stem Cell Transplant…….. I have had 2 Allogenic (donor) Stem Cell Transplants (June 2014 then Oct 2015)….
Honestly the SCT process on paper can sound very scary but having been the 2 myself and talked with many many people over the past 11 years a very high percentage will admit that the SCT process was actually not as bad as they were thinking it would be….. and here I am coming up to celebrate my 11th re-birthday… I turned 70 last Nov antic am continuing to live a great life.
Always around to help more or just to chat.
Unfortunately these consultants have to highlight the worst case scenarios……
The last time I talked with my Head SCT Consultant about success rates she said that her unit was running at 92% going on to long term remission 5+ years….. then folks are discharged to get on with life.
I was actually discharged at just under 3 years post my second Allo and now only have full bloods done once a year.
She also said in her unit the average life expectancy for folks who did not go forward with a SCT when it was recommended and was not taken up was 2-3 years.
The 8% in her unit who did not survive the process were average age of 59 (I was 58 on my first Allo and 59 on my second) with all having at least one underlying other health issue and that their pre SCT prognosis was very poor…… I have Asbestosis so this was looked at very closely but as my 2 Lymphomas had progressed significantly we agreed that we role the dice.
Focus on the now and only deal with what is next if and when it comes along.
