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Nilotinib dosage

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Hi everyone, not panicking but at the start of my Cml diagnosis January 2015 I was on Imatinib 1 capsule a day, in September that year it was decided this was having minimal effect on my Cml so from then on up to the present day I have been daily on 800mg of Nilotinib I have reached mmr for the last couple of years, but just wondering, not questioning the experts advice if anyone believes my dosage intake seems large, I never seem to read anyone on this amount.

Hello there. I currently take 600mg daily, but I have read of others taking 800mg daily. Maybe those who do will chime in and give you some insight as to why your doctor may have chosen this dose. They will probably ask you some important questions about your lab reports so you may want to have those handy...

Thanks Alaina, I wonder if I’m on my own on this admission but my approach with my usual every 12 week appointments is to get blood test, no more than 2-3 minutes of conversation with my doctor and get out, call it ignorance but I tend not to delve to deep on the blood technicality, my faith is totally in my doctor.

My husband started at 600 and when he started losing body hair the dr said that was sign he was getting too much med and since he was undetectable brought down to 400. He stayed undetectable on that until his first TFR attempt.  Never went back on Tasigna because of concerns about vascular events. However he then had pulmonary issues on Sprycel.  From everything I have read they are trying to get patients to the lowest dose that keeps them in deep remission. 

Dustylloyd - not sure why you were started on 800 mg Tasigna - standard starting dose is 600 mg per day.  I was started on 600 mg per day in Oct 2016 when diagnosed.  It beat me up pretty badly with all sorts of fairly typical and not so typical side effects.  But it also beat the crap out of my CML - mmr in less than 90 days and >MR4.5 in 6 months.  Because of this combination od great PCR results and awful side effects, my oncologist allowed me to reduce dose 3 times over a 6 month period - first to 450, then to 300, then to 150 mg 1x/day.  I had to be tested every 6 weeks during this time, but it was worth it.  I have now been on 150 mg/day for 16 months and have maintained >MR4.5.  I still have transient side effects but none nearly as bad as during those first 6 - 9 months.

If you have been MMR or better for more than 2 years, you should definitely discuss dose reduction with your doc as you are a good candidate.  There are lots of studies out there, most notably DESTINY:

https://learningcenter.ehaweb.org/eha/2018/stockholm/214524/richard.clar...

If your doc won't consider does reduction for you, then you need a new doc.  Good luck

Yes Alison - that should be the goal - lowest possible dose to keep you at or better than MMR. My doc was not of this belief 2 1/2 years ago, but he is now.

Dose reduction as never been part of the conversation I have been on 800mg a day since September 2015 to the present day,during my 12 week regular check up I’ve wondered why I need such a strong dosage when I have reached my main objective of MMR, I’ve noticed, only lately that I have started having some of the side effects which are shown on Nilotinib leaflet.

Since I have seen three different oncologists, and been on all three TKI (gleevic, sprycel and then tasigna).  I would say every doctor is different, some will take more aggressive approach than others.  If you don't have much side effects, and your PCR is going in the right direction, then there is nothing wrong with your treatment.  If you do reach MR4.5, then you can start reducing dosage under your doctors supervision. 

You don't have to reach MR4.5 to begin dose reduction. You might feel better about dose reduction if you are at MR4.5, but many of the trials required only MMR (MR3.0).  Dcotors are probably different, but the more enlightened ones will strive to find the lowest possible dose that will maintain PCR response at or below MMR.  And yes, dose reduction should be supervised by your doctor with more frequent PCR testing.  Don't go rogue on this one unless you enjoy Russian roulette.

Thanks cmljax and every one at Cml Support group, you’re replies to any questions are so helpful, it’s very reassuring that as a member of the Cml “club “ support is here, and before I got involved with Cml Support I,along with my wife would try to answer my problems most of the time unsuccessfully .Again many thanks to you all 

Hey, dusty! 800mg is/was the dose for those who were intolerant/resistant to imatinib, as i was! i started 800mg nilotinib in september/2014 and still on it, despite been under MMR4 most of that time. I was thinking about a dose reduction but i think i'll wait until i reach 3 under MMR.4.5 results. good luck!

Hi Lucas, thanks for the reply, you started exactly 1year before me on 800mg Nilotinib and like you Imatinib didn’t have the effect my doctor was looking for and hence I have been on Nilotinib since, and also like you I’m in no rush to change anything. Cml support group puts my mind at rest again. Many thanks