You are here

you have been a lifeline for me, thanks

I thought I ought to say hello as I have been reading the forum avidly since being diagnosed but not really joined in as I was only diagnosed on the 10th march 2011 and to be honest i just didn't know what to say!

My name is Emma, I am 37, I am happily married, I have a son who is 5 and a daughter who is 3. I teach part time in a primary school near where i live in Milton Keynes. I am usually quite a well person, i only had a routine blood test as i was falling asleep some afternoons and thought i was anemic, good job i went to the docs really!

I have responded well to treatment so far, I started the ERNST 1 trial in Oxford Churchill hospital taking Nilotanib. I am doing ok, 4 weeks on the pills, i only seem to have tiredness and the odd dizzy spell as side effects. But then having two small children makes you tired anyway!! I was told on Thursday my platelets were a little low, 55, so if they go down again i will have to stop the Nilotanib for a week. This happened when I was on the imatinib (which i only took for 8 days) so I was not surprised. I hope the levels come back up soon as i have read that you can get an immunity to the drugs if you keep stopping and starting, not sure if this is true???

So I still don't fully understand the terms, abbreviations, treatments available and options open to us all. I have good days and bad days emotionally, i just want to be around to see my children grow up. Although i am trying to be positive, for all my friends and family too, i still have moments were i get into those dark places - does that get better in time?

So thanks for the info, hello and i look forward to getting to know you all.

Any useful tips most welcome!!

love 

em x

Hi Em...er, having young children AND working in primary school is enough to make anyone dizzy, let alone a CML-er, so WELL DONE you!!! I work part-time in primary, but only as a teaching assistant,,,mind you, that does mean I'm stuck with only working with the special needs kiddies!! You're doing really well and it's still very early days for you, be kind to yourself, take time out to re-group with yourself and get as much rest and sleep as you can.

As for the dark places, we all go there, but time heals that and one day you will find yourself laughing with people about it...like I did when I wailed to my mother that I just couldn't get Christmas all pulled together and that I didn't know what was wrong with me....she gently reminded me what was wrong with me and I laughed and laughed. It can also be a last resort retort when pestered by salesmen, or people who think working part-time is some sort of cop-out!!! So, enjoy those moments, they'll surely come!


You might like to keep a record of your blood test results, over time it can be quite a useful tool and quite healing when you get to see the effectiveness of these drugs. I just get my consultant to note down reds, whites, platelets & BCR-ABL (the nasties!)...

I'm on Dasatinib so can't help you with side effects of Nilotinib.

xx

Vickie

Hi Emma

I was only diagnosed in February 21st 2011 myself and i'm on glivec at the moment. It is very hard to accept at the beginning and i'm still in shock sometimes myself. I have a young child and had all sorts of dread going through me when told. The worse thing i find at the moment is the tiredness wow i never knew i could get so exhausted. You will find loads of support on this site to be fair i think i would still be crying now if this site was not here. I went to see a specialist in Liverpool a few weeks ago Prof Clarke. his words to me were "you concentrate on your normal life and let me worry about the CML" this put my mind at rest loads. Anyway if u need anything i'm sure everyone will be here to help as much as they can.

Take care and i'm thinking of you

I'm 28yrs old and live in North Wales. Your doing well and welcome to our exclusive club

Naomii x