Hi! 18 months into being diagnosed with Chronic lymphocytic leukaemia (CLL) and suspected Chronic myelomonocytic leukaemia (CMML), I’m still at early stage and not needing treatment as yet. However, yesterday I received a copy of my consultant’s latest report with new blood results showing that I have 17p depletion and ATM loss. Didn’t know what that meant but, based on a quick look on the internet, these results look very depressing. It’s another month or so before I can talk to my consultant. Can anyone advise and cheer me up?!
Hi @Murdoch have you a special nurse, your GP or consultants details that knows you and you can contact and talk through the contents of the copy of the letter you have received?
I am certainly not medically trained, so have no idea at all what it all means.
As for cheering you up all I shall say be kind to yourself and sending you virtual hugs.
Thanks, Erica. I have no known specialist nurse contact, my GP says it’s specialised detail beyond his expertise and currently my consultant arrangements are in transition so I don’t actually know who it will be next. Hence my blog here. A quick google implied very short life expectancy with these genetic markers and difficulty in treatment.
Oh @Murdoch your ‘very quick Google search’ might well not be reliable.
Google gave me a life expectancy of 5 - 10 yrs and 19 yrs later I am still very much ‘alive and kicking’ and I really enjoying my life.
My Dr said I was more likely to die by being run over by a No.65 Bus. However I must admit to viewing those buses with caution.
Take lots of care and perhaps stop Googling and just stay with your forum here.
I’ve a completely different condition and Dr Google paints a very grim picture(weeks to months) but I’m now on a year since my hospitalisation and I’ve learned to trust the specialists.
A bit of advice based on my experience if you’re still keen on speaking to a nurse specialist. Ring the hospital where the consultant is based and ask the operator to put you through to the haematology department.
There’s sometimes a few minutes on hold but I’ve always found admitting I don’t know who I’m looking for and asking for help gets results.
All the best
Wullysamba, that’s very good advice. Never thought of that. Mainly because the haematology department is a hundred miles away but of course there will be a specialist nurse there. Great stuff. And I will trust them. Good luck to you too.