I am on the Destiny Trial at Hammersmith Hospital and now in month 16. I have bumped along the bottom on 12 months of 200mg of Glivec but now after 3months without any dosage I have all zeros. I am delighted but realise it may be a one off. I hope others on the trial will replicate my experience. I do, however, notice growing aches and pains in my joints in particular my fingers and knuckles. Is this a withdrawal symptom ? It could be arthritis setting in as I am nearly 72 or a result of stopping a powerful drug. Many thanks to all who share their experiences and skills and knowledge on this site . It is a great help. Barry
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Stopped Glivec Destiny Trial
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Barry,
congratulations, that's really good news. Tonight I attended a conference in London where patient's TFR was being discussed. It seems that a lot of clinicians -throughout Europe- are aware of this effect for some patients after stopping. No one is sure exactly why people are experiencing increased pain on stopping, but there are thoughts that it may be something to do with TKIs suppressing the thyroid hormone and this after effect may be a consequence of low thyroid hormone. Other experiences seem to point to low levels of Vit D3 so it may be an idea to supplement and see if that has any effect. Most think this effect will diminish over time. I hope it does.
However, it is still a great achievement for the story of TKIs----that for some it may turn out to be a 'functional cure'.
Best wishes
Sandy
Many thanks for your comments Sandy.
I will try some Vitamin D3 supplement. Although I get plenty of sunshine as I am a keen vegetable gardener and beekeeper, it may still not be sufficient to produce enough vitamin D.
It could be a factor in my bone pains.
Good luck to all on the Destiny Trial.
Let's hope a high proportion of us can remain drug free.
Barry Philip A
First I must congratulate you, Barry. What a great result - long may it last for you on TFR. Hope the pains soon go.
I am currently just into month 12 on half dosage in DESTINY (and waiting for results for Month 11) but as my PCRs have been bobbing around and I've never achieved lower than Log 3 since dx 6 years ago this month, my consultant and I decided at clinic last Monday that it would not be a good idea for me to come off meds altogether. However, I am very happy to stay on 200mgs of Imatinib as all side effects disappeared over the past months.Far preferable, I feel, than coming off meds and then having to go back onto 400mgs.
Fingers crossed for all on DESTINY,
Thinking of you, also, Darley as you start TFR
best
Chrissie
Seems I can't think logically. Though I can count ;)
I've done a year on half dose but I have to continue on half a dose for 13 months and until my NEXT appointment when I get my results AND a formal decision about coming off.
I do know however that the results are all good though and so I'm hoping that it will be just another couple of weeks and just a rubber stamping by way of a formal confirmation.