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Hi All,

Just found this site after googling "Alcohol and Tasigna" :)

Seems like I probably shouldnt be drinking!!  I was wondering if its ok to drink alcohol during the "fasting" period with Tasigna? Anyone got ideas?

I was diagnosed towards the end of  June and as I was in EastAfrica finishing a contract at the time, I got back to Europe pretty quickly. I have been living out of a suitcase even since, moving around to various friends and pretty much coping with no support and no other patients to talk to. My 3 month BCR-ABL were sub optimal so i was moved from Imatanib to Tasigna and started this week.

There are clinical trials going on at my hospital for Tasigna augmented with Interferon, some patients were able to discontinue medication completely after a few years of this. I wasnt a good candidate for the trial as I move around too much and the study needed a 5 year follow up. Its taking place in Switzerland and Germany (the trial).

For those on Tasigna, I am finding the mobile app TasiTrack highly useful. Check it out on Google Play.

Finally,I kept a diary for the first 3 months, if folks are interested in patients story, let me know and I'll send you the link.

My white blood count was at 335,000 at diagonsis (platelets were 2.5M soon after), I'm curious how 'bad' this was compared to others at diagnosis? The docs all seemed to react rather strangely to the fact that I wasnt sick at that point (the blood test was a routine screen for malaria).

Eva

Long story short, the answer is "no" - you should not drink alcohol during the fasting period. Recommendation is only water during the time, and I think chicken broth allowed too. Basically, calorific free hydration seems OK.

David.

Hi Eva,

I was diagnosed this year and have been on Tasigna since then and on weekly IFN since month 3.  The IFN is tough. I have had a great response and am lucky and grateful.  My PCR is 0.006 after 6 months...but I am completely compliant.  Tasigna 12 hourly without fail, fasting is fasting for two hours prior and one hour after without fail.  My Dr's to some degree attribute my response to compliance - I know that's only one factor.  I have also given up alcohol - completely.  Tasigna affects the liver and I figure why give my poor liver more to deal with?  Fizzy water is my new champagne and it's fine.  Of course do what's right for you but these drugs are tough but they work.  

Best of luck,

Ben

Thanks guys, 

I will be sure to fast completely....water and green tea only. Doing my best on the compliance, its been tough with traveliing through time zones. Would be interested to see how others cope with this....

Hello Eva,

 

I was dx in 2010 and was put straight onto Tasigna. I as initially a little cavalier with my medication, not adhering to the 12 hour regime as strictly as I should. Consequently, I didn't achieve MMR until much later than I otherwise might have. Difficult to say if that was the real cause, but a more strict adherence from 2012 onward seemed to yield better results. As for the alcohol, I quit totally in 2010, per the earlier response from Ben, Tasigna is quite toxic on your liver and any time i drink alcohol, it means my body is having to fight a poison as well as CML. I feel healthier now I don't drink and am a connoisseur of non-alcoholic beers and other beverages. Like David, I have to agree that you shouldn't be consuming anything of significant calorific value in the fast period. I'll drink coffee (no sugar), water etc. but would not have a milkshake. I certainly wouldn't have wine/beer.

As for the time zones; i did quite a bit of international travel and you effectively have two choices: 1. stick with the same time in you home country - i simply set an alarm to ensure I'm taking my dose at 10AM and 10PM UK time, no matter which country I'm in. Useful for a short trip, but if i'm away for 2+ weeks, then it's option 2:

 

2. Slip your time to match the local time. I will slip (or advance) the time i take the meds by 1 hour each day. So, if i've travelled from the UK to East Coast USA, it will take me 5 days to re-align my tablet regime from UK GMT (10AM/10PM to 10AM and 10PM local time. I've not done any time zones greater than 5 hours since diagnosis, but you get the idea.

Season's Greetings

Chris

 

I travel a bit for work, and to keep my schedule regular (and to help with adherence in general) I find using an app on my phone the best way for me to manage this.

I've used two apps - Dosecase (iPhone and Android) and Easy Pill (iPhone) that both work well. They remind you, bug you even until you take your pills. They're time-zone aware too so it helps manage a regular schedule.

David.

I've been using TasiTrack which was designed for Tasigna

 

Thanks, I decided to slip the schedule as  I was in Asia for a month. Then I had a retinal hemohrage and the doc said to change back to Imatanib. 

I can now tell you where to get blood tests in two sri lankan towns, a good opthamologist and the one chemist in Colombo that stocks Imatanib. Wondering if keeping a wiki on med services related to CML worldwide is a thing worth doing....

 

 

I quit drinking long before CML Dx (9-2016) and I wouldn't get anywhere near it while I'm on Tasigna. I was MMR in 83 days and I attribute that to very good fortune, strict adherence to timing and fasting guidelines. I also have not missed a single dose although I took 1 dose 2 hours late one morning which was OK because I adjusted next dose to 11 hours out then back on schedule.  I had slightly elevated ALT (65) for about a month and still have slightly elevated indirect bilirubin (1.2), so I try to take real good care of my liver.  All other physical side effects are now essentially gone, but my blood sugar has been consistently up about 20 - 25 points from before Tasigna (93 - about 115).

My biggest problem has been 7 confirmed squamous cell skin cancers (see my separate thread on this) and no one knows if it's the Tasigna or not.  Frequency has slowed since December, so I am staying the course with Tasigna but monitoring very closely. Would be interested in anyone else's experience with skin cancers on any of the TKI's.  I never had any type of cancer before CML diagnosis, not even skin. I am almost 64.

Thanks for that. What does ALT mean?

 

Sorry to hear about your other troubles. I read that Imantib can make you more sensitive to sun, dont know if the same is true of Tasigna but if so it could imply a greater risk of skin cancer - lots of good wishes for your second battle!

Hi Eva,

ALT is an enzyme made in the liver, also called SGPT. Elevated levels may be a sign of liver toxicity (hepatotoxicity).

You'll notice that in posts on this forum some words are in blue and underlined. These are words this web site recognises as in the CML "dictionary", so you can either hover your mouse over them (if on a desktop computer) or click on the word and it'll take you to an explanation of what it means.

David.