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Dasatinib SPIRIT 2 Trial / Young CML patients

Hi everyone,

Is anyone else on Dasatinib for the Spirit 2 trial?

I have been on Dasatinib since mid September but my counts have been very up and down and don't seem to be settling very quickly - I'm having to have blood tests at least once or twice a week and to see my specialist once a week. My platelet count has been as high as 3500 and as low as 32! I just wondered if anyone else has experienced unsettled counts on Dasatinib?

I am only 21 and was diagnosed the same month that I graduated - the nurses have found it difficult to find someone of a similar age and situation for me to chat to about my CML - if this applies to anyone then please contact me as it would be great to exchange experiences.

Also, it would be great to hear of anyone on the same medication as me.

Claire

Hi Claire,

I was diagnosed on 9/9/09 and am 29, I have been on Imatinib for 1 month now and am just getting used to my new life.

If you would like to get in touch please do so at pesty at hotmail.co.uk I am happy to share experiences if you would like. Where abouts are you?

Speak soon.

Michelle

Hi Claire, As you know CML is even more rare in younger adults. I am 37 and still feel young to have CML, We have a cml support group in yorkshire and one of the patients is around your age. If you follow the links tab on this site you will find it. once your a member of the site you can send a pm to another member. Good luck. Take care. Chris.

Hi Claire

I was diagnosed in May and now 31.

I am also on the Dasatanib trial do get in touch.

Carlos

I have platelet counts that are up and down,I am on Dasatanib but not on the Spirit 2 trial,I am a glivec reject and sadly twice yor age,
Your platelet count will level out as your condition improves,your doctor can change the doesage if needed,Its quite common so please dont worry.
michael

Hi Claire

I was diagnosed in September and I too am on the same Trail and same drug but I am a young 43 year old. My platelets droppped dramatically after a month on the tablets but my consultant is not worried at moment as he said they will level out - I am back on Tuesday for my second visit and 3rd lot of tablets so I am hoping that the results are better this time

hi

I am 22 years old i got CML before 2 month after i got married and now i am pregnant
Im taking interferon (roferon-a) but i stopped the treatment until reach my fourth month
and i want to know if it safe for my baby if i continue the medication , thanks

Hi, my daugher 17 is going to be taking Dasatinib from today as Glivec was making her have terrible stomach cramps. I am not sure whether she is on a trial. Will find out later today when I see the consultant.

Dawn x

Hi Dawn,
Good to hear news of you and Becky. I hope she feels a lot better on dasatinib. Rio used to get stomach cramps on imatinib too.
Thinking of you!
Take care,
kestrel

Hiya, Becky seems ok on Dasatinib.. She really had enough of Glivec, was really fed up of the side effects, fingers crossed she will be ok now.. xxx