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Advice please

I am hoping that someone on here could give me some advice to help me make a decision! I stopped Glivec after 8 months due to liver problems and then went onto Dasatinib which i have been on for about 2 years. I have had quite bad pleural effusion with it so have been on and off treatment for a while but recently was offered Tasigna. I started at the 800mg dose and the side effects have been awful (think being able to tick the box on pretty much all the side effects listed as well as a few that didn't exist!) so I stopped treatment and went back to the hospital.

My consultant wants me to try again but starting at 200mg a day and trying to 'build up' to the optimum dose. I am now scared to do this and am tempted to go back on Dasatinib and try steroids to keep the pleural effusion at bay.

Any advice would be gratefully received!

K

Dear Karena,

I am sorry to hear you have had such extreme side effects from both dasatinib and nilotinib. The only advice I can offer is that you discuss your fears about restarting nilotinib fully with your consultant and try to make a decision. I would also say that if you re-try nilotinib at what is quite a low dose (200mg) and still find you have intolerable side effects then at least you would be able to re-try dasatinib + steriod support. Nilotinib in first line use is given at the lower dose of 300mg and the data shows that it is still very effective.

I hope this is helpful,

Best wishes,

Sandy

Good Afternoon Karena

The very same thinghappend to me earlier this year, nearly copped it this time with so much fluid in the lungs. Yes did take quite a while to get back on the straight and narrow. It was decided that Dasatinib was at fault, although I did have a chest infection first, but that was ignored. Tasigna was suggested, along with a new trial drug (didn't fit within the trial protocol as not enough BCR-abel) so Tasigna (Nilotinib) it was.

Started on 600mg aday, and all was well. Recently increased to 800mg and really not too bad, more than a few aches and pains, but bearable, still have to take the magic pill to keep chest fluids under control, but so far so good. Did think I had the effect of blurred vision, but tracked that down to a different cause. This should be fixed this coming Thursday.

I would suggest that it maybe worth giving a lower dose  chance, see what happens.

I have found the side effects of Nilotinib more bearable than those of Dasatinib, certainly regarding the mood swings and bad temper along  with excruciating fatigue.

Just my thoughts, hope they help, if you need any more info, just ask

Have fun

Keith

Hi Kerena,

Just a thought but wondered what dose of Dasatinib you've been on and whether that could be lowered to keep the PE at bay? I went down to 70 mg per day (from 100) after a bout of pleural effusion about 18 months ago - it hasn't come back and my PCR is still undetectable, so it might work for you too.

Sarah