5 replies to this topic

[Lori's okay]

Hi All,

Wondered if you have practical tips that have helped you on this TKI CML path. 

I have found a way to record my dosing schedule I've wanted to share, Found a tiny ballpoint pen that fits in the Tasigna carton along with a 3x5 card.  It has been really helpful to have it be so easy to keep the record, and to be able to go back and say, 'when was it I took the meds?  when is it I can eat again?'  The pen is by Marvy called a Petite.  You can get them on Amazon. Keeping the record has also kept me honest with myself about how often I miss a dose, which I think is extremely important in this process!

What has been helpful to you?

Lori

[bayclub]

Hi:  When I first was diagnosed 2 years ago, and the doctor put me on TASIGNA, little did I know how difficult it was to take this medication.  Over and over I had to go a local pharmacy to have them explain the "empty stomach", two hr. wait after meals, etc.  What I have tried to work out is that I cannot adhere strictly to the 12 hr. interval and if I take the meds between 11 & 12 hrs., it's okay.  For me personally, it's that I don't miss a doseage.  I don't know if the other meds are as difficult to take?  Would like to hear from other CML    patients how they're doing on their meds. 

[LLawrence]

I am also on Tasigna.  I have a pretty predictable daily schedule, so the 2 hours of not eating before the meds and one hour after have not been as bad as I would have thought.  I take my am dosage immediately after awakening (usually 6 am), do my morning routine, then eat breakfast after 7.  The pm dose is not as easy, but I set my cell phone alarm for 5:30 pm and take the dose then.  Supper is any time after 6:30.  I've not had any grapefruit the whole time, but I have occasionally had a piece of fruit or handful of nuts during the fasting zone.  No body parts have fallen off afterwards, but I try not to do it often.  It seems to work fine for me.  So far, I've just forgotten once in the last year plus and taken the pm dose right before bed.

Leesa

[jjg]

Lessa It's good to hear no body parts have fallen off - I've had a similar experience!

I take tasigna at 3am so I don't need to worry about food because as far as I know I don't raid the fridge in the middle of the night. It was disturbing sleep wise for about a week. The key has been to remember if I have taken it. I set an alarm but mostly I wake up a few mins before the alarm, turn the alarm off and go back to sleep. To make sure I have taken the tablets I cut 2 tablets out of the foil and put just the dose next to my bed. That way if I forget they will be staring at me in the morning.

The second dose is then nicely between lunch and dinner. Generally just 2 hours after lunch. It's  good for me as I would eat continuously given the option. Often I have to take it in meetings so I've gotten good at swallowing it without water. I have two alarms on my phone one to start fasting and one to take the tablets but mostly I just note the time when I finished lunch. On the weekend it often gets pushed back because of a late lunch but I've been told that anything between 8-16 hours is not awful, and 10-14hrs is absolutely fine. The only time I found it hard was during a long hard bike ride (8hrs) where normally you would need to eat continuously. I've actually taken the tablets literally while riding a couple of times so that I could eat right at the end of a ride - it's quite hard getting it out of the foil with one hand and I know if I drop it I'll have to go back and eat it up out of the gutter!

[IGotCML]

I take Tasigna between 10 - 10:30 each morning and evening.  I take a weekly supply to work and have an Outlook reminder set up on my PC for my morning dose.  It is easy to fit in between meals as I am done with breakfast by 7.  Days I am not working have more variation for the morning dose as breakfast is usually later than 7.  I create an event on my IPhone for 2 hours after I am done eating in the morning.

No reminder for the evening dose, but I rarely forget and I also put the meds on my bedroom floor so I will see them before I hit the sack.

[mariebow]

I forgot my 11;00 PM DOSE last night oh well, did not realize it until this morning when I saw the tasigna was still in the package