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Tasigna regimen & efficacy

For those of you are Tasigna - how strict are you with your "every 12 hours" instructions?  I have to admit that I am not great at it.  I probably average it but its more of a "morning and evening" dose every 10-12 hours.  Is this laxness potentially limiting the efficacy of the drug?  Currently low MMR, not quite MR4. 

I saw an improvement in my numbers when I made a conscious effort to stick close to 12 hours and started drinking more water, D3, and K2. Not sure what helped more so I continue to do all of it.

Hi JPD

I am super strict on the 12 hourly instructions … setting my alarm for 6am, and often dozing off afterwards… & I have an alarm on my phone for 6pm. I am also strict on eating my evening meal from 7pm. It’s not that difficult for me, I have no kids at home, just my partner & we’ve read ‘somewhere’ that the % success of using Tasigna is increased when you are more consistent with the medication times. I feel for anyone with a younger family, juggling to make this all family friendly.

if I can find that article on times & effectiveness.. I’ll fwd. the link to you. 
 

take care

Annie 

PS I am only 8 weeks in from diagnosis, perhaps  I’ll become less rigid with time 🤔🤪

I am very strict 8am and 8pm. But there have been occasions when the evening dose has been take an hour or 2 later ie out socialising with a meal with family or friends as an example.

My response is MMR 0.066 at 3 years. Interestingly and maybe coincidental but I tend to get the bigger drops when I eat fattier unhealthy foods.

But I am a turtle who knows. However I would really try to be as strict as humanly possible. I’ve gotten used to it but this drug is a pain for that!

Al

I have been taking Tasigna 300mg Twice a day since Jan 2017 ( I was 37 years old  then when diagnosed). I am taking it 6am in the morning and about 4-5 pm in the evening. My last two and half years counts has been 0.02 to 0.01 ( Md Anderson Scale ) .  

How strict are you on the no eating 2 hours before / 1 hour after rule?

I'm just about to start Tasigna and I'm thinking of which is the best time to take it. I'm thinking maybe at 10 pm and 10 am.

Does that mean I can't even take a cup of coffee between 8 and 11? A glass of water? Not a single beer or glass of wine if its saturday night?

Hi!

Personally I am very strict. I drink only water and according to patient information leaflet, a few spoons of apple jam is OK as well (no joke)

In reality, suggestion is to avoid anything calorific, especially fatty meals. I do not recommend alcohol as well since basically every food or beverage can increase absorption and thus increase the risk of unwanted adverse effects. If you bend the rules a few times nothing will happen I guess but I would suggest not to take any additional risks

I have read that some drink black coffee or tea. In my personal opinion, they should be harmless but above mentioned of not taking any additional risks still applies in my case

In summary, Id suggest sticking to water only as recommended by the manufacturer and clinicians

Timo

Hi!

Personally I am very strict. I drink only water and according to patient information leaflet, a few spoons of apple jam is OK as well (no joke)

In reality, suggestion is to avoid anything calorific, especially fatty meals. I do not recommend alcohol as well since basically every food or beverage can increase absorption and thus increase the risk of unwanted adverse effects. If you bend the rules a few times nothing will happen I guess but I would suggest not to take any additional risks

I have read that some drink black coffee or tea. In my personal opinion, they should be harmless but above mentioned of not taking any additional risks still applies in my case

In summary, Id suggest sticking to water only as recommended by the manufacturer and clinicians

Timo

Naj, hoping you get this message; four and a half years is a long time to be on the full dose of any TKI.  While it's true that younger CML patients tend to tolerate the full dose of TKIs better than older CML patients (average age at diagnosis is 64) that shouldn't be a reason for anyone to stay on a full dose of any TKI any longer than absolutely necessary.  The less TKI we take over the longterm the better off we are likely to be.  In your case, when CML has been plateaued, or rangebound, at a low level (below 1.0) for a prolonged period of time, generally a year, or so, on average, as yours has, CML patients can typically begin to gradually reduce their dosage without it having an adverse effect on their CML level.  If you would, please post your CML chronological history showing your BCR-ABL test levels for a better understanding.   Thanks in advance.  It seems that most oncs still don't believe in dosage reduction so it may take some effort on your part to convince him/her to allow you to do so, or to find an onc that will.  It's well worth the effort.  With time plateaued CML levels typically drift lower without regard to dosage

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I'm not as strict with the eating rule because I am only taking 150mg twice a day. I eat by 8 am, dose at 10, eat before 7 pm and dose anywhere from 9 - 10 pm. The food concern applies more to high fat foods which I tend to eat. I'm also more strict with grapefruit because just about every rx I take has a grapefruit restriction. I've been told 1 hour one way or another shouldn't make a difference, plus Tasigna has a very long half life, 17 hours as opposed to 5 hrs. for Sprycel.