Hi everyone I Have just been diagnosed with cml and was offered the choice to join the new spirit II trial and I am on dasatinib. Is there anybody out there who is on the same trail. I am 43 years old I have two children aged 8 and 10 and I am finding it hard to accept that I have Leukaemia as I feel quite okay. It doesn,t seem real - does anyone else feel like this
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Hi Jacqui - sorry to hear about your DX, however you have found a great community hear to help you through
I was Dx's nearly 3 yeas ago almost by accident as I had tried to donate blood and when i couldn't they said they would send it off for tests, a few days later wham the Dx, and almost every day I have the same feeling as you as I was and am feel fine.
CML can be for some something that is a little in the background with just a tablet a day, but for others this is not the case and either the drugs don't work out to well or the side effects are not bearable.
I was also recently diagnosed with CML ( a couple of weeks ago)and, like you, have no symptoms and can't really believe it. The nurse at the haemotology clinic says she has heard this before so I guess it isn't unusual with CML! I went to my GP with bruised, swollen fingers and blood was taken.....I also chose to join the Spirit 2 trial and am on Imanitib
( started treatment on Friday of last week). I am a 60 yr old woman living near Exeter.
Good luck with your treatment - I understand huge progress is being and has been made over the past 10 years or so, so we can be pleased that we are DX now rather than then.
Hey all, I guess we are not as uncommon as we first think hey! :-) I was diagnosed on the 9th Sep and started my treatment last Thursday - I am on Imatinib - the golden bullets (to quote another fellow member).
I think all of us feel the same, so normal yet so different.
I was originally misdiagnosed as having Shingles and then after a blood test was told the news. I am female and 29 years of age (I was only joking when I said I was going to fall apart at 30!)
At first I found it helped by thinking of it as a blood condition. Without using the 'L' or 'C' words to begin with things seemed a hell of a lot less scary for me. After a while my head adjusted and I can say these two words understanding that nothing changes, its still the same blood condition and I wont suddenly drop down dead after using them.
This site has been fantastic for gaining information on CML and the support network seems invaluable.
This is my first post and I hope to get to know you all a bit better soon.
We can all get through this, I truly feel that once you have your head straight, its half the battle won. Like we said, the rest feels normal!
Anyone living in the Croydon area??
I would like to welcome all new members to this forum. I do hope you continue to find support here and although a diagnosis with CML is life changing on several levels, you will find a positive benefit out of the negative. Talking is essential to recovering from the shock of diagnosis and you can do that in an online forum like this and/or find others willing to meet up informally.
Some of our members never post but find great comfort in reading what others say here.
We reach a lot of people worldwide (more that you probably realise) and all of them find some support in the knowledge that there are other people going through the same or similar experiences.
So keep posting when you need help, when you have questions, when you have something to share that will help someone else.
This is a worldwide community and all the more powerful for that.
Yes it was a shock as like so many of you I was having routine blood tests for nearly a year as my white cells were raised and more recently my platelets were high. I was having tests for the menopause as I was having night sweats - my Doctor kept asking me if I was bleeding from anywhere or had I noticed anything different as she could not understand my blood tests, I was also checked for breast cancer as she found a mass but that was negative. She finally got fed up with taking blood from me and rang the heamotologist dept and he said he would see me. Even then I was not worried as I felt fine - Okay I was tired but with two children I thought that was normal.
When I started Dasatinib I was scared of the side effects but apart from the first couple of days it has been okay - I still get tired and bad stomachs but all in all it is okay. I just hope the pills are doing something. My next appoinment is on the 6th October - what happens then can they tell if it is working at this stage - I am that thick I didn't even realise that they are a chemotherapy drugs - Does anyone live near Colchester in Essex
Hey I was confirmed with cml on the 9.9.2009 a dated you won't forget 999. Hey have you been given the option of joining spirit II trail - I am trying to find out more about the two drug which is imatinib and dasatinib
After reading your last post I think you would benefit from someone explaining the condition to you fully. As I have only just been diagnosed myself I really dont feel qualified to do so. But I see there are some very experienced people on here that would be able to give you some pointers on questions to ask the hospital, key indicators with results and what information we should gather ourselves to monitor and understand our progress etc.
To be honest the latter questions would help me too!
I feel that understanding is key so you can ask your specialist proactive questions and keep an eye on what treatment is best for you.
Have I missed something ?,you have gone straight on to Dasatinib without going on Glivec?
What hospital are you under? sorry to have so many questions