Starting Tasigna...

Hi,

There's no medical reason you can't go back to imatinib if you switch to nilotinib ... except for, of course, there's always a reason why the patient moved away from it in the first place. But it's not like imatinib suddenly doesn't do what it used to just because you took another TKI. 

In general, though, once people switch they do not tend to reverse it - but it does happen.

You need to take nilotinib (Tasigna) twice a day, at 12 hour intervals. You must not eat anything with calorific content for 2 hours before, and one hour after taking your pills. 300mg, twice a day (so 600mg in total) is the most common dose. 

A common schedule may look like:

• get up at 6:30am with 2 hours not eating completed when asleep and take your pills
• have breakfast at 07:30
• have lunch at your leisure
• do not eat or drink anything with calorific value from 16:30
• take your pills at 18:30
• have your dinner any time from 19:30 onwards

You should try to keep the times you take the pills 12 hours apart. Deviating from this every now and then by an hour or two to allow for a meal out that you aren't controlling the time of, for example, is not the end of the world.

David.

Hiya Tanya, Tasigna sounds an absolute pain to me far too complicated ,I think all that timing and fasting would take over your life ,I really couldn't do it .I still think you should give Sprycel another go ,one tiny pill at night and that's it no faffing around .Denise.

O Tanya ,I feel for you I really do ,but it's your life and your body and you are having a hard time with it all .He should be working with you to make it all bearable Tasigna sounds like too much hard work to me as you are already struggling to cope .Wish I could give you a hug ,wish you had a good friend to help you thru this .Keep strong Sweetie ,you can do this .Denise.

Thank you Denise,you are very kind and brought me to tears with your loving response!I wish you could hug me too!Am grateful for your empathy towards me,thank you again,it is most difficult to navigate this whole CML thing and life at times but I know I gotta remain grateful and keep doing what  I know to do.God Bless you,my friend x 

Hi Tanya,

i am new to the forum. I have been diagnosed  with cml in June last year. Initially I started with Imatinib but switched to Nilotinib in last October. At the beginning, it wasn’t easy due the fact it has to be taken absolutely at specific times, with 12 hours gap between morning and evening doses.  To make sure I don’t forget,  I set the alarm on my  mobile  phone, at 6 am (take tablets morning), breakfast around 7, stop eating at 4 pm and  6 pm take tablets 2nd dose, dinner anytime after 7. Setting the alarms really help me,  otherwise it will be quite  impossible for me to remember with busy life work and kids. When choosing time, I have decided the times depending on what suit best with my daily routines. For example, I decided to take  morning tablets at 6, breakfast at 7, as I have to be at work at 9. I follow the same pattern everyday. 

In terms of side effects, low blood counts but better now, joints and muscle pains but again improving. I have some spots on my skull, like pimples and get tired easily but overall manageable.

 I saw the consultant two weeks ago, we are hoping to reduce the dose to one dose, after several months, depending on PCR test results.

Hope this will help! I wish you good luck!!! Take care. 

Hi Tanya.  Joining in a bit late, but for what it's worth, I was Dx in Sep 2016 and started on Tasigna 300 MG 2x/day.  Yes the fasting and dosing was a real pain, but I developed an alarm system and managed my meals around the pills without much trouble.  During the first 6 months I had multiple adverse side effects - some fairly common like fatigue and the folliculitis bumps on the scalp.  Unfortunately, I had some not so normal side effects, like a rash of squamous cell skin cancers (never had one before in my life), swollen salivary glands followed by painful mouth sores, benign heart arrhythmia, hair stopped growing but did not fall out, etc..  It was basically a living hell for me, but the medicine worked extremely well - I reach MMR in 82 days and MR4.5 in 6 months, at which time I fought my oncologist tooth and nail for dose reduction.  Over the next 6 months, I reduced 3 times, first to 450 per day then to 300 per day and finally to 150 mg once per day, which I have now been on for 20 months all the while maintaining >MR 4.5.  I have very few side effects today - only very mild dry mouth and an occasional heartbeat skip.  My heart is very healthy for now and I have ECG's twice a year to monitor Qtc interval which Tasigna can cause to rise. 

All that said, if I had it to do all over again, I would have elected to start on Gleevec because of the lower toxicity both short and long term. I came close many times to switching to Sprycel and maybe I should have, but I kept thinking "the devil you know" if you know what I mean.  Many on this forum would recommend Sprycel over Tasigna, but it really depends on your overall health profile and your own body's reaction to the medicine.  If you are at MMR or better and tolerate Gleevec well, I'm not sure why you would switch to any other TKI at this time unless you want to drive your PCR lower for a later attempt at TFR. All the others are more toxic.

Good luck whatever you decide.