4 replies to this topic

[knation]

I am interested in hearing from other people on Tasigna. I just got my 1st months supply from the pharmacy. I won't begin taking it for about 6 weeks still (long story... pregnant and waiting till after baby is born).

I am nervous that it will be difficult to adjust to the directions. Twice a day on an empty stomach (cant eat hours before and after taking it) and 12 hours between doses. Will I have to wake up super early, take it and go back to sleep? How do you make this the most convenient in your life?

Also.. any other experience you've had as far as side effects and what not. I know it is different for everyone and of course I've read all of the labels and warnings... I am just wondering how many people actually experience these side effects and to what degree.

Thanks!

Kayla

[Marnie]

Hi, Kayla. . .

I had your very same concerns when Gleevec stopped working for me.  So I asked my oncologist to prescribe Sprycel (Dasatanib), instead.  Since I'm a teacher, I didn't want to have to be taking meds in the middle of class, and trying to work around any social dinner plans just seemed like it would be a nightmare.  There are people here who have found a schedule for taking Tasigna that works for them, and I'm sure that you'll hear from them.  When I thought I'd be switching to Tasigna (that was my doc's preference), I decided that I'd take it at 3:30 a.m. (wake up and then go back to sleep) and at 3:30 p.m.  Ugh.  There are a number of folks I've heard from who do 9:00 and 9:00.  That would have been my route, except for the teaching part.

Good luck figuring out your schedule.  It's probably too late, but you may want to talk to your doctor about Sprycel instead.  It has worked great for me (2 months now), though I haven't seen my PCR numbers since I've been taking it (2 more weeks of waiting impatiently).

Marnie

[cometbro]

See previous threads:

http://community.lls.../9911?tstart=30

http://community.lls...tart=0&tstart=0

http://community.lls...tart=0&tstart=0

I just make sure I take it "some" time in the day, and "some" time in the night without worrying about the 12 hours apart, except for the 3 hour blackout period when taking it.  I've been on it for like 5 months and so far I am doing well.  Sometimes I take it at 7 a.m. just waking up, then at 11 p.m. when about to go to sleep.  That is a 8/16 interval in taking it, not 12/12.  I worried about it myself taking it exactly 12 hours apart, as it would hinder lifestyle.  My doctor said my scheduling is fine, then I reconfirmed it by emailing Dr. Druker.

My side effects have been occasional itchy scalp, can't sleep more than 8 hours, and skin dryness.  Other than that, i've been able to resume normal activities.

[Cathy]

kayla,

Hi First best of luck on your delivery. My second grand child is due may 26. You are to young to have CML! I was dx may 2010 gleevec stopped working for me in Feb so after fighting with my insurance just got my first month of Tasigna (from mfg not ins still appealing) and have taken it for 3 days only. I'm taking it at 10 and ten has worked out okay for 3 days except i overslept this morning and now have to wait till 11 to eat. So it will take some getting used to. My onc and great nurse said don't get up in the middle of the night that's crazy. She said just start with 10 or something experiment and keep a log and figure out what works best for you. I was scared to start over with new side effects since i have just lately been feeling better and getting gleevec side effect tolerable. Just a  new adventure and I'm still alive .lol As far as side effects none really yet I'm alwaysa little fatigued so that hasn't changed and I'm a little dizzy so nothing much yet. Yeah.

You will be fine and having  a new baby, you will be so happy hopefully you will just breeze thought this. Family and friends are what get me through life !

Best of luck to you,

Cathy

[Trey]

I'm sure your Onc told you, but just to be double sure, breast feeding is not allowed with the CML drugs.