Hi, I was prescribed 1000mg hydroxycarbamide on 4th February as white blood cell was 167. Diagnosed with Chronic myeloid leukaemia. Had bone marrow biopsy a few days later and see Consultant on 28th for results and possible medication change to Imatinib. I was wondering what dosage does everyone start with and if the side effects are different to Hydroxycarbamide?
Everything is still very new to me and I’m still adjusting to the diagnosis.
Thank you
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Hi @Rosey a great big welcome to our forum, I am so glad that you have found us.
Others might be able to share their experiences for you.
I believe however the dosages are very much tailored to you and your whole medical history.
What I have noticed as well is the way people react to the medication is very individual too.
Perhaps in the next 5 days you might write down all your fears, questions and practicalities for your consultant, in this day and age choices should be patient led, but you also need the answers in plain language to be able to make those decisions.
I will copy the link to Chronic myeloid leukaemia on the Blood Cancer UK website which might answer some of your queries.
Chronic myeloid leukaemia (CML) | Blood Cancer UK
I found it took me a long while to adjust to my diagnosis, my thoughts and emotions were all over the place.
Just be ever so kind to and really look after yourself and please do keep posting as I look forward to hearing more about you.
I was diagnosed with Chronic myeloid leukaemia at end of December and have been taking Imatanib for 3 weeks now. White cell count has gone down from 70 to 9 this week. Blood tests every week and phone appointments. Side effects are quite minimal.
Hi @Rosey and welcome to the forum.
I can see you have already received some response already.
How are you doing? Diagnosis can be a difficult time. So much to get your head around but not enough time to do it what with appointments and procedures.
I agree that medication is different for everybody but it’s always good to share experiences.
The first appointment can be daunting. Have you got somebody coming with you?
Get all of those questions written down.
Please take good care of yourself X
Dear @Rosey - welcome to our forum 
I’m sorry to hear about your diagnosis. Understandably you will have questions as you adapt and get your head around it all.
As other wonderful forum members have already said, we are each unique and so courses of treatment and side effects will differ.
I was diagnosed with Chronic myeloid leukaemia almost 13 years ago. I had a short course of Hydroxycarbamide to get my white cell count down immediately after diagnosis (I can’t recall the dosage) before starting on Imatinib - 800mg a day. After two years, I was then moved to Nilotinib in order to get my counts down to where they needed to be. And for the past two years, after a slow reduction in dosage, I have stopped medication under very close ongoing monitoring. And so far, so good
When I first started on treatment, I did feel a bit poorly. I mainly had bone aches and cramps in my legs and flu-like symptoms but these dissipated after a few weeks. I did however have ongoing fatigue which took me a while to get to grips with and manage.
As others have already mentioned, it’s really helpful to keep a note of symptoms, so you have them to hand to talk through with your care team, as well as energy levels so that you can start to adapt. I found it really important to listen to my body, rest when I needed and to generally be kind to myself.
Do take care and please do ask any and all the questions. Let us know how you get on at your next appointment.
Maggie