@aussielyn
Forum Replies Created
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- July 24, 2015 at 5:41 am
Hi there ! I've been on combo for nearly 2 years now – last PET was March & I'll have a CT in September. I did have some severe side effects – joint / nerve like pain in legs , feet pain , headaches , mouth ulcers & dehydration were the worst. I was taken off meds for a week & then put on a reduced dosage of Dabrafenib & a short course of prednisone. Now I only get the odd headache & a bit of fatigue at the end of the day . I exercise most days of the week which I believe really helps. I wish you continued success with this treatment.
Cheers
Lynette
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- July 24, 2015 at 5:41 am
Hi there ! I've been on combo for nearly 2 years now – last PET was March & I'll have a CT in September. I did have some severe side effects – joint / nerve like pain in legs , feet pain , headaches , mouth ulcers & dehydration were the worst. I was taken off meds for a week & then put on a reduced dosage of Dabrafenib & a short course of prednisone. Now I only get the odd headache & a bit of fatigue at the end of the day . I exercise most days of the week which I believe really helps. I wish you continued success with this treatment.
Cheers
Lynette
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- July 24, 2015 at 5:41 am
Hi there ! I've been on combo for nearly 2 years now – last PET was March & I'll have a CT in September. I did have some severe side effects – joint / nerve like pain in legs , feet pain , headaches , mouth ulcers & dehydration were the worst. I was taken off meds for a week & then put on a reduced dosage of Dabrafenib & a short course of prednisone. Now I only get the odd headache & a bit of fatigue at the end of the day . I exercise most days of the week which I believe really helps. I wish you continued success with this treatment.
Cheers
Lynette
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- June 24, 2015 at 3:30 am
I've been on the combo 23 months now and am tolerating it really well. I did hit the wall with side effects at the 5-6 week mark – dehydration, mouth ulcers, really bad leg/ joint pain , temps – you name it I had it! – I had a good weeks break off meds & then resumed on 50mg dose of Dabrafenib & a slow weaning off prednisone . Still on same reduced dose of Mek & dabrafenib now. I exercise a lot & live a full & healthy life. I do get the odd headache still but nothing paracetamol doesn't fix. My scans to date have shown NED & I'm hoping that continues. So hang in there – there's light at the end of the tunnel!
Re your flushed face – I found my skin went red/ speckley on my legs & red/ hot on soles of my feet & hands at times. The side effects seemed to be short lived & even cyclical for me.
I take the combo at 5.30am & dabrafenib 5.30pm – I drink 3 big glasses of water & make sure I follow the time schedule for empty stomach.
I hope this helps – I know it's hard when you first start out – you just don't know what's ahead . Take care & all the best.
Lynette
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- June 24, 2015 at 3:30 am
I've been on the combo 23 months now and am tolerating it really well. I did hit the wall with side effects at the 5-6 week mark – dehydration, mouth ulcers, really bad leg/ joint pain , temps – you name it I had it! – I had a good weeks break off meds & then resumed on 50mg dose of Dabrafenib & a slow weaning off prednisone . Still on same reduced dose of Mek & dabrafenib now. I exercise a lot & live a full & healthy life. I do get the odd headache still but nothing paracetamol doesn't fix. My scans to date have shown NED & I'm hoping that continues. So hang in there – there's light at the end of the tunnel!
Re your flushed face – I found my skin went red/ speckley on my legs & red/ hot on soles of my feet & hands at times. The side effects seemed to be short lived & even cyclical for me.
I take the combo at 5.30am & dabrafenib 5.30pm – I drink 3 big glasses of water & make sure I follow the time schedule for empty stomach.
I hope this helps – I know it's hard when you first start out – you just don't know what's ahead . Take care & all the best.
Lynette
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- June 24, 2015 at 3:30 am
I've been on the combo 23 months now and am tolerating it really well. I did hit the wall with side effects at the 5-6 week mark – dehydration, mouth ulcers, really bad leg/ joint pain , temps – you name it I had it! – I had a good weeks break off meds & then resumed on 50mg dose of Dabrafenib & a slow weaning off prednisone . Still on same reduced dose of Mek & dabrafenib now. I exercise a lot & live a full & healthy life. I do get the odd headache still but nothing paracetamol doesn't fix. My scans to date have shown NED & I'm hoping that continues. So hang in there – there's light at the end of the tunnel!
Re your flushed face – I found my skin went red/ speckley on my legs & red/ hot on soles of my feet & hands at times. The side effects seemed to be short lived & even cyclical for me.
I take the combo at 5.30am & dabrafenib 5.30pm – I drink 3 big glasses of water & make sure I follow the time schedule for empty stomach.
I hope this helps – I know it's hard when you first start out – you just don't know what's ahead . Take care & all the best.
Lynette
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- July 15, 2015 at 10:55 am
Hi Rita & Charles ,
Ive been on this combo ( reduced dosage of Dabrafenib) for almost 2 years& touch wood will remain NED on it for a long time!
It has never given me an upset tummy but I did suffer side effects around the 6 week mark – that's why my Dabrafenib dose was reduced.
I take the mek & dabrafenib at 5.30 am & the dabafenib on its own at 5.30pm. I drink 2-3 big glasses of water with them & always follow the instructions re at least 1 hr before & 2 hrs after food.
I generally feel really well & am able to do lots of exercise which I enjoy.
All the best with this treatment,
Lynette
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- July 15, 2015 at 10:55 am
Hi Rita & Charles ,
Ive been on this combo ( reduced dosage of Dabrafenib) for almost 2 years& touch wood will remain NED on it for a long time!
It has never given me an upset tummy but I did suffer side effects around the 6 week mark – that's why my Dabrafenib dose was reduced.
I take the mek & dabrafenib at 5.30 am & the dabafenib on its own at 5.30pm. I drink 2-3 big glasses of water with them & always follow the instructions re at least 1 hr before & 2 hrs after food.
I generally feel really well & am able to do lots of exercise which I enjoy.
All the best with this treatment,
Lynette
-
- July 15, 2015 at 10:55 am
Hi Rita & Charles ,
Ive been on this combo ( reduced dosage of Dabrafenib) for almost 2 years& touch wood will remain NED on it for a long time!
It has never given me an upset tummy but I did suffer side effects around the 6 week mark – that's why my Dabrafenib dose was reduced.
I take the mek & dabrafenib at 5.30 am & the dabafenib on its own at 5.30pm. I drink 2-3 big glasses of water with them & always follow the instructions re at least 1 hr before & 2 hrs after food.
I generally feel really well & am able to do lots of exercise which I enjoy.
All the best with this treatment,
Lynette
