Hi Andy
I go to the Hammersmith and until recently the West Mid. I was 42 when diagnosed and I've met quite a few CMLers in London who are similar age or younger - 20s and early 30s. As Sandy would point out, what usually gets mentioned is a median age not an average and a fair few of us are diagnosed "young".
Cheers
Richard
Hi Andy
I am not from London but was just reading your post and thought I would let you know that like you I was 37 when I was first diagnosed with cml - I am now 48 and thanks to Glivec, Nilotinib and most importantly the wonderful Professor Clark and his team at the Royal Liverpool I am still going strong.
Kind Regards
Julie
Hi,
I was diagnosed back in March 2009 at the grand old age of 34. What concerned me back then was hearing from the oncologist about how unusual it was so see somebody of my age with CML. After looking on here and a group on Facebook i see it's not so strange.
It's always great news to hear about others doing great after so many years on the medication!
Hi Andy,
Median age at diagnosis is around 55 - although this figure seems to differ depending on what document you are reading.
This means there are a lot more people diagnosed under that age than most people would have you believe.
Of course it is a rare disease anyway at 1-2 in every 100,000 - so it is unlikely that you will meet many people - no matter what their age- unless you attend a specialist CML research centre. In London the main one would be the Catherine Lewis centre at Hammersmith Hospital.
I am based in London and was diagnosed at aged 50 but in late chronic/accelerated phase, so I suppose I would have been around 45 if I had been diagnosed in chronic phase.
Over time I have met quite a few younger people who have CML and more and more are being treated with TKIs. Only a few years ago, if you were under 45 and diagnosed in chronic phase the advice would have been to go for a stem cell transplant if you could find a donor- sibling or unrelated.
Many younger people did take this route because the thinking was (and maybe still is in some circles) the possible longer term effects, both positive and negative, of TKI therapy are unknown.
Over the last decade, there is more confidence that TKI therapy will keep the majority who are diagnosed in chronic phase in long term remission, effectively for a normal lifetime. So increasingly, there is less enthusiasm for transplantation with the high risk of post transplant negative effects such as GVHD or even worse.
Having said that, over the same period there have been advances in SCT such as the 'mini' or reduced intensity transplant.
I know there are many members of this forum who are very near to your age- if not even younger. However, not everyone feels comfortable posting on a public forum and prefer to remain anonymous.
You may have missed the post below from Rob W who was diagnosed at 22.
He says " I would be very interested to hear from others who are living with CML, particularly younger people as I often feel like the odd one out for being diagnosed at such a young age."
Sandy
