Hello
I'm Rachael. I'm 37 years old and was diagnosed with CML last Friday - so am very, very new to all this!
This has come as an enormous shock. I've lost quite a bit of weight over the past few months and have been bruising very easily - but nothing else. It was a routine blood test last week that set the alarm bells ringing (white cell count was extremely high)
I was admitted to hospital for a night and have since seen the consultant haemotologist who has prescribed Glivec (imatinib). I'm going back next week to see him.
I'm also waiting for an appointment for an ultra sound on my spleen - which is enlarged - even I can feel it!
I have been feeling very tired and nauseous since taking Glivec - but not sure whether this is the drug or the emotional rollercoaster ride I've been on over the past 10 days!
Despite the positive stories I've read, I'm still struggling to come to terms with it all so any help, advice, words of wisdom would really help me greatly.
Many thanks for this wonderful site x
You are here
Hello I'm new...
Hi Rachael, so sorry that you have been diagnosed with CML, its a journey that we would all rather not be going on. I was diagnosed 18 months ago, with exactly the same problems as youu have described. Its a shock be told you are ill, for you and your family & friends. I was in a mess for months, frightned, scared & almost ready to plan my funeral! But I'm here, fit and fairly healthy, my life has carried on as yours will too.
As you will see from this site, there is a mine of information. Go back & look at some of the old posts as well. You will find there is a lot to learn & you will find reassurance here to, with friendly advise.
Some people have bad side effects but mostly they can be managed with other drugs. For sickness you can ask your Dr for an anti-sickness like Metoclopramide, it does help I found.
As your white count goes down, so will your spleen. If I remember rightly, mine was gone within a few months.
Please feel free to post any worries you have, there is always someone to ask advice from.
Wishing you all the very best & keep in touch.
Ali
I am sorry you have to deal with this diagnosis but you are not alone. As Ali has already indicated you will find that the more you find out about CML and how is is treated the less daunting it is for you.
400mg of Glivec/imatinib is the front line therapy for newly diagnosed chronic stage patients.
As the weeks go on you may experience side effects as your body gets used to the drug and regains it pre-CML equilibrium. Most experience very manageable side effects and nausea is the most common. To counter this you should make sure you eat a large meal before you take the drug... and make sure you drink lots of water too.
You might experience leg cramps/aches too but this effect does diminish within 12 weeks.
Please keep us updated here and ask as many questions as you need to. There are many members here who will be able to help advise and support you.
the US Leukaemia and Lymphoma Society's website might be of some help as it has a lot of information about CML. Go to our links page and scroll down for the link to their site, amongst others.
Where are you being treated?
Sandy
Hi rachael,i was diagnosed 6 years ago at the age of 26,if you want to email me for a chat then please feel free.kathy.prudence@homecall.co.uk
I just wanted to say a big thank you to everyone who has replied so far.
I'm so glad I found this site because although I can talk to my other half, family & friends, unless you've been in this situation it's really difficult to explain exactly how you are feeling etc
PS Sandy - I'm at Bedford Hospital
Hiya, i dont want to repeat what everyone has already posted, but this site is the best around for genuine no bull support, Sandy is the lady to ask if you have any main medical Questions.
It does not sink in within a week or two about been Dx with CML, i,m still digesting it and i got dx 6 months ago on my Birthday, Christmas eve! which really hit not only me my family, but even people in the local area who know me. I am good at coping with things but just as i,m feeling great some side effect comes along. at the moment its a bit of light headedness, had a blood test today just to double check all is ok on that front.
But as for now if you do want a chat just e mail me on christopher105@hotmail.com you will find its good to have contact with other cml especially as we are also most on same meds at the mo. In one respect i,m lucky as a lady who only lives less than half a mile got Dx 6 weeks after me.
Anyway hope your feeling well and look forward to hearing how your doing. Chris 38 Halifax.
Hi Rachael
Just wanted to say hi and let you know there are a couple of us on this site that are from Bedford. I was dx back in 2007 and have found a very good friend also from Beford via this site. We get together for coffee and chats quite frequently and altough I am currently in Addenbrooke's having a transplant he has even been here to see me.
If you ever want a chat let me know and I will give you my email / phone number and once I get out of hospital we can always meet up.
There is a lot to take on in the early days but it won't take long before the 'shock' wears off and life develops some sort of normality; life won't be the same but different doesn't mean bad there is still lots of fun to be had.
Take Care
Helen
Hi Rachael
I will definately get in touch when I am home but in the mean time please feel free to email and say hi my address is hcy0da@googlemail.com
Best wishes
Helen