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Newly diagnosed with CML

Hi All

I am 28yrs old and live in North Wales.

I was diagnosed on Monday 21st February 2011 with CML, i have never heard of this before and neither had any of my friends or family. When i was told what i had i was so scared that i was about to drop down dead. I have a 7 year old son who is my world and all i could think about was him. After a few days i am managing to get my head round this i think. I'm still very confussed. I am going back to the North Wales Cancer centre on Tuesday to be signed onto the spirit 2 trial where i shall be told what drug i will be taking. I am so grateful that there is a site like this and also the yorkshire CML forum as initially i thought i was the only person ever to have had this. Its so inspiring to hear other peoples stories.

I'm hoping that in the future many of you can help me with my results as at the min i know nothing other than my white cells are at 33k and my platelets are 800, my spleen is not enlarged but i don't no what any of this means.

I must say thank you to David and Chris for there help and info so far they have both been great.

Hope you are all well


Welcome to the site,

 If you read through the site you will find help & guidance with just about anything to do with CML.The initial diagnosis is allways a shock, & your head is bound to be spinning with all sorts of worries & confusing thoughts. It sounds like you have been diagnosed early, which is allways a good thing, & hopefully once you start on which ever drug that is given to you, you will respond well, & that your blood levels will quickly return to normal.

 This site is allways their to offer advice, & as you will discover from its pages, is full of comments from people with many years of living with CML. Try not to worry to much, easier said than done, but things will become clearer with time. One initial piece of advice, try to keep a note of your blood levels in a notebook, so that you can see for yourself how things are going, & feel free to ask both us, your fellow CMLers, & especially your doctors about about anything that you do not understand, as we are all here to offer whatever help we can.

Chin up & keep in touch


Bob just wanted to say thank you, this site is proving so useful to me already, thanks for the note book tip i will defo be doing that. Thanks again Naomii

Hi ,

 It's trauma being given the news and takes a few sleepless nights to come to terms with things.However, in a month or two when your blood counts return to normal you'll start  living as you have done previously.

I was diagnosed last August and felt pretty much as you have described. I'm  also on the Spirit 2 trial (on the Dasatinib arm)and feel fine. I play 5 a side every week and squash and running regularly. I reckon I feel fitter since starting the treatment.

Good Luck........and don't worry........swine flu is one of the ladies at the recent CML conference pointed out.


Dave M

Hii was dx 7  years ago i was 26 ,my son was 10mths at the time,its all very scary at first but things do get easier,please email if u would like to talk,


Hi. I was diagnosed in May last year, and I'm being treated at Glan Clwyd under Dr. Hoyle. I enrolled onto the spirirt 2 trial and was allocated Dasatinib which seems to be having great results with minimal side effects.

The Cancer centre staff are excellent and very reassuring. I also went to the Royal Liverpool hospital for a consultation with Prof Clark which was well worth the trip.

Like you I was very worried for the first few weeks, but my blood quickly returned to normal and I'm living much the same as I used to. In fact my energy levels are better now than ever. I'm sure it will all go well for you too.

I'm with doctor Heartrin, only had my dx appointment with them but they seem good. The specialist nurse is called Steph and she is lovely. I am going to Speak with Someone at the Royal Liverpool in the next couple of weeks. Thanks for letting me know you are there as well, we may bump into each other at some point.

Thanks Ni

Just a quick question, as you were basically the same age as me when DX. Now that your son is 7 has he noticed anything as i'm worried about what to say to my little boy.

Thanks Ni x

Dear Naomi, welcome to this forum. I know how shocked you must be, especially as you have a child. My daughter was 12  when I was diagnosed over 12 years ago. Things have changed since then and we have far more choice of therapy. I think you will benefit enormously from taking part in a clinical trial ... and you will be monitored very closely and by expert clinicians. 

Please consider waiting before you tell your child any more than is necessary. Wait until you know exactly what your options are and how you feel yourself. 

Please do not hesitate to ask questions here, 

Best wishes,


Thank u Sandy, i am slowly getting to grips with it i think. I have not said much to my little boy other than mummy is poorly and will have to take tablets. I am panicking now about oney and my house and work etc which i think is pretty normal.

Thank u for getting in touch really appreciate it. I must say as well that this site is fantastic x