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Starting Tasigna...

Hi friends!

Saw Professor in Sydney today and he wants me start on Tasigna and hopefully will go into whatever I need go into to be able stop meds.Said it would be about 5 years before I can stop and that he’s had a lot of good results with this drug. He also said I can’t go back to Glivec if I start on this.Am confused as to how many milligrams is optimal and also how to take it?Not with food,2 hours before you eat or 1 hour later and 12hours apart?Cant get my head around it.Can anyone who has experience with Tasigna let me know please also side effects etc.which Professor said were minimal.Thank you friends🙂

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.

Thanks for all of that,David.The Professor said I cannot go back to Glivec because of the Pharmaceutical Benefits Sceme here in Australia.I don’t believe him.He was also pushing Tasigna in a BIG way,like he was getting paid for doing so...Not sure what to do now...Stick to Glivec and get another Doctor,or get onto Tasigna and see if can get rid of this CML...He did say 300mg Glivec will never get rid of it...Yr thoughts?

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.

 

Thank you Denise,I hear you...don’t know if the new doc will stay with me if I go back Sprycel,I sorta suggested it but he was SO pushing Tasigna...dunno if I can deal with the Tasigna dosing either...God Help!

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.

I can't give you any advice on that - but if there's a non-medical reason you can't go back to imatinib, that might be true. There's an anomaly in the ELNet guidelines that does give a route back to imatinib once you leave it but there is not a strict medical need.

If you are not happy with your doctor you could always get a second opinion from elsewhere. 

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 

Thank you David,yes they did not even have any of my blood tests or anything and yet this Professor was pretty full on!Will see him one more time in 2 months,hopefully he will have bloods then and will take it from there.

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. 

Thank you so much,that does make it much clearer in my mind if I do start taking Tasigna.You have not had hair loss or gone into early menopause?You sound well and are busy and coping,so that’s tremendous!I do hope you are able to get into deep molecular response and eventually go off the drug!Because I am a neurotic depressant,I think I would rather stick to my 300 mg of Gleevec that I am familiar with,rather than start on a new drug and be unawares of my mental and physical response,however sometimes we have to take risks I guess.I wish you well,friend,and keep us all informed of your progress!

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. 

Thank you so much for all of that and am glad Tasigna is wiorking do well for you,despite the horrid initial side effects!I do hope you can eventually stop treatment,as is the aim of most of us, and Thank God for these drugs!Having said that,I I am feeling extremely alone And unmonitored,as far as no one has my last bloods?and the new Haemo.will only see me if I use Tasigna,so need try find new Doc.asap.Yes,others on here are having great success with Sprycel,I might give the 50mg another go for a while but would prefer to stay on 300 mg Glivec,even if it’s not doing much but keeping the CML down.Good to hear your comments,friend,and can you let us know your progress through this process.

Hi Tanya, do you still visit this forum sometimes? I wonder how is your Tasigna story, as I am about to start it. Would be happy to hear from you.

 

Dear friend,I never began Tasigna,switched from Glivec to 50 mg Sprycel and am doing very well on it.Many go well on Tasigna too there should be others here who can give you info.I hope you get well,quickly on Tasigna.