dasatinib

hi Samantha
My Husband Rob has been on Dasatinib nearly 6 months now after changing fron Glivec because of poor response. Initially he had very severe headaches- a very common side affect. These passed after a fortnight. Since then he has only had affects similar to those on glivec; skin rash, stomach upset and cramp, but these are intermitant.he was checked weekly for the first 2 months but now only goes to the hospital for his pcr.
His second pcr on dasatinib is due to be taken next week, the first didn't show much change, but we're hopeful of a better result this time.
I hope you have a good response and that any side affects are managable. Where are you being treated? Rob sees Graham Smith in Leeds.
ATB-Sal

Hi there,
My husband Gary is 42. He was dx 3 years ago and was on Glivec. He initially reached CCR but gradually his counts began to go up. After 12 months on 600mg Glivec without a significant change in his counts, he has just been accepted for Dasatanib. On Monday 15th he will have a Bone Marrow Test and then he will start on 2 tablets a day like yourself. He is being treated at Manchester and will have to have weekly visits after which time we hope funding will become available in Bolton where we live. It sounds as if he and you are in similar positions. I will keep posting updates as to how he is coping with the change in drugs. Take care. RACHEL

Hi Samantha
same thing happened with me, after five years with Glivec, response 'plateaued' so a change to dasatinib (sprycell) was advocated. This was last Novemeber and apart from a couple of frequent visits to check for the water retension aspects, nothing else. Response to the new meds has been fine, has taken over where Glivec left off and now down to about 95% to 100% cytogenetic response. These resultys are based on pcr tests only. Because of my ongoing problem from INF days with very low platlets, I cannot take the proper dose of 100mg daily, I can only manage 50mg daily, platlets seem happy with this level of poison. Side effects ? noticable are : loss of the 'happy' feeling one had with Glivec, meaning that one has to work on not being a grumpy old git, water retention (chest cavity), means that I weigh myself every day, if weight goes up for more than three days then take the necesary pill and al retuns to normal, or what passes as normal. Possibly the headaches you all mention are to do with the 'grumpy' feeling I mention, I overcome this with positive thinking, such as being happy that I defied doctors who in 1996 told me I had possibly two months to live and at besr 4 years. For what it is worth, my philosophy is that I am not living with cml, it is living with me, and I want to live my way, so it had better keep up, or clear off. Morcombe and Wise has the right idea with their song, 'always look on the bright side off life' If I can help any of you all out there or you want any more info on my perhaps off beat ideas then do please contact me and I will do best to help you.
Have fun and keep smiling
Keith
(The Henley Cowboy)

Well Gary started taking Dasatanib on Monday of this week and has headaches which he describes as 'like when you have a cold and your head is all blocked up'. Last night he also slept very badly as he was complaining of pains in his legs like pins and needles and cramp all together. He also thought it felt like Sciatica as it started near his hip and travelled down his leg. Its only Day 2 so I'll keep posting.
RACHEL