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Hi. Just wondering if anyone else has high platelets whilst on Imatinib. My white blood count is going down nicely - but my platelets continue to rise. 

On the contrary, mine are too low - perhaps we can do a swap?

Unless your doc is alarmed by the platelet count, try not to worry about it. Despite being in remission for 10 years my CBC values are not perfect, but they're not adverse enough for my doc to be concerned.

Chris

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My platelets where around 950 and wbc 330 when I was diagnosed they did take sometime to come down along with the white count. A lot of us had to take another chemo pill called hydroxycarbamide before commencing TKI. But as you can see numbers where completely screwed until I started meds and since being on TKI they’ve all been perfect which is quite incredible really. Give them time to do there job.

Thank you for your reassurance. I took hydroxycarbamide for 8 days. I’ve been on Imatinib for 3 weeks and my wbc has already gone down to 7! It definitely is working. It’s just my platelets keep going up rather than down. They are doing twice weekly bloods at moment to monitor. I guess I’m just nervous because I’m still adapting to new diagnosis. I really appreciate your supporting messages 😁

Anytime and you’re welcome. Yes my platelets were stubborn on Hydroxy they only got down to 600 on that. Once I started Nilotinib they all returned to normal. I am sure it’ll eventually be the same for you.

Alex

Hi. Quick question - were you put on Imatinib first? This drug is not working for me. My platelets still very high and dr now says my CML is aggressive. They are putting me on Nilotinib next and I’m just really hoping this will work. 

Daniel, when were you diagnosed?  what are your PCR readings?  Platelets?  Will you be starting on Nilotinib/Tasigna 600mg?

Thanks, 
Buzz

Hi. I was diagnosed last month on March 24th. I do not know if they have tested my PCR - it has never been mentioned to me. My platelets went up to 1000 after the hydroxi chemo followed by 3 weeks of Imatinib at 400mg. Dr has taken me off the Imatinib for a week and then plans to start Nilotinib. I have not been told anything about dosage. 

Hi,

If your platelets are not responding to imatinib then it makes sense to move you to a 2nd Generation TKI such as nilotinib. I assume (if you are in the UK) the dose will be 800mg per day - @ 400mg twice a day - rather than 600mg per day, as you have already been treated with imatinib. 

It is good that your doctor is 'on the case'. It is highly likely that you will see a reduction in your platelet count once you start taking nilotinib. If you have any questions or need further advice do to hesitate to ask on this forum. 

Sandy

Thanks Sandy. Much appreciated. 

Same happened to me, the white cells came down immediately and platlets continued to rise. It was quite scary at the time, and this was right at the start when i was on lyria rather than Imantanib. Having to take a 7 hour flight with sky high platlets was one of the most nerve wracking things ive had to do.

But finally the platlets behaved themselves. I had sub optimal progress after 3 months but had a super quick remission and have been a model patient ever since. so just because you've had a rocky start doesn't mean you cant jave a great result.

We flipped my treatment between tasigna and Imantanib in the early months, for reasons other than the platlets but ive been stable on Imantanib since December of that year, having been diagnosed in late June