Nilotanib

My husband also attends Hammersmith and took Gliveec for 11 months and then swapped to Nilotinib .Once he got his head around the fasting it was fine. He has tried various times i.e 12am/12pm and has now settled with 5am and 5pm.This works well for him, he sets alarm (doesn't have to worry about the 2 hour fast beforehand),takes pill then back to sleep until 7am. He finds fasting from 3pm-6pm easier than his previous time of 12am and 12pm. These times do not interfere with lunch meetings or going out in the evenings etc. Think you just need to think about your lifestyle and what suits you best and then you MANAGE the drug rather it dictating your life! Hope this helps.
Mary Ann

Hi Mo,
good luck with your switch of therapy. I am sure you will work out the best times that suit your lifestyle. The key is to stick to the same time of day/night so the levels of drug are stable.

Best wishes,
Sandy

Hi Mo,

Good luck with the new drug.

How long were you on Glivec for?

I have been on Glivec for 4 years (hardly any side effects) now and last time I saw my consultant at HH, she told me to think about reducing the dose to 200 per day.

I am not too sure if I want to reduce the dose as Glivec is not causing me any problems at the moment and I have read that reducing the dose does not always work for everyone; many people have to either go back on a higher dose of Glivec or go on to a new drug.

I would appreciate any comments/suggestions from anyone who is going through or has been through the same experience.

shahid

Hi Shahid,
Patients who have achieved stable molecular responses over some years are thought to be candidates for the DESTINY study which HH is part of. There are a few people on this forum who are currently taking part in this study. The first part is to reduce your dose to half for 12 months. If you maintain your molecular response at the same level as the full dose, then you will be asked to take part in the second part of the study. This is where good responders (to the reduced dose) try stopping therapy altogether. During this study you will have PCR tests on a 4 weekly basis- so any problems with rising counts would be seen. Currently that are just under 40 people enrolled nationally at about 4 centres. As soon as the other centres open (there are around 20 in the UK who are involved) we should see many more enrolling.

It is true that in the past doses under 400mg were not recommended, but for those whose responses are good and have achieved a stable MMR (3 log/0.1% (IS) by q-PCR) or lower over at least 2 years, this is not thought to be an issue. That is probably why your doctor at HH has suggested you might want to reduce your dose. It would be within the DESTINY study.

Sandy

When I was taking the tablets twice a day I was taking them at 6 am and 6pm. So fasting during the night and the I could have breakfast after 7 and likewise I would fast from 4 pm and couls eat dinner from 7pm. I used to set myself a reminder @ 15:45 to have a biscuit or cup of tea etc before the fasting started. On holiday I would adjust by an hour so that I could have teas or drink up until 5pm.
Hope that helps.