30 replies to this topic

[Tim76]

I just started Tasigna a few days ago, after five years on Gleevec (loosing response) and about 7 months on Sprycel (pleural effusion).

So far, so good, but just a few questions for those people already taking Tasigna.

How strict are you with the doses twelve hours apart? How about the no food before and after taking Tasigna? What happens if it's not 12 hours apart or I forget and eat too soon before taking the Tasigna or after taking it. Does anyone have a good time each day that they take it?

Thanks

Tim

[NotJack?]

Hey Tim,

I am a new member (but lurker since 8/11 dx).  I asked my specialist onc at Mayo the very same question.  His response was that all things being equal, you receive the best benefit by adhering as close to possible to the directive.  Having said that, he said that the more important consideration is the empty stomach ruling, rather than the 12 hour rule.  The food in the stomach can alter the effective dosage to a higher dose.  I take mine at 6 and 6.  That way I get up and take it, and just wait an hour for coffee, etc.  The evening dose, I alter to fit dinner plans occasionally if necessary up to an hour or so (rarely more).  Hi to all of the members here, and thanks for being here.  Jack

[sdl722]

Hi Tim,

I have been on Tasigna since April 2011.  I am a patient at MD Anderson in Houston and they have told me repeatedly that as long as I take my dose at least 8 hours apart (not 12) then I am ok.  I don't actually go as little as 8 hours in between doses, but I do not worry about specifically hitting 12 hours.  I generally take my morning dose between 4am-5:30am (when I usually wake up to use the bathroom)  and my evening dose between 4:30pm-5:30pm, with dinner usually 6:30pm or later.

I do try to stay strict to the no food 2 hours before and 1 hour afterwards.  Since my morning dose is still in the middle of the night (I usually dont have breakfast until at least 6:30am), then I don't have a problem  meeting to empty stomach constraint there.  For the afternoon, I snack about 3pm and then go into my fast before taking the pills and then having dinner. 

Hope this helps.

Stephen

[NotJack?]

Good to hear Stephan. I couldn't nail my onc down to a minimum time.  A four hour leeway will come in handy at weddings and such!  Thanks, Jack

[Tim76]

Thanks Stephen and Jack,

I was trying to find 12 hours apart in my schedule and it can be rough. From your two answers, I'll now think about 10:00 AM, since I usually enjoy breakfast and the newspaper and 10:00 PM, since I very rarely eat after dinner and bedtime is shortly after that.

Jack, you did say that you wait for coffee? Can you still drink before and after Tasigna? I thought it was just food. No water, coffee, juice, etc?

If I remember correctly, you shouldn't take Tylenol with Gleevec and Advil with Sprycel. Is there a pain reliever of choice or allowed with Tasigna?

After three and a half days, I really feel well. No immediate side effects as with Gleevec and Sprycel. Is there anything that really bug people with Tasigna?

Thanks to those that responded and will respond. This is a lousy "club" to belong to, but I've e-mailed and talked to some of the best people that have CML.

Tim

[sdl722]

Tim

You will want to avoid Tylenol with Tasigna due to its impact on the liver. Advil is ok and what I use when needed.

Stephen

[NotJack?]

Glad to be able to help.  Stephan seems to get a little different info than I do. I was told no coffee or juice or tea in the 3 hour fasting window--just water, by Mayo. NO GRAPEFRUIT JUICE EVER.  My friend suggested the 10/10 timing, but for me (and Stephan I believe)  it is easier to only have to schedule one 3 hour time frame (evening). Taking it when you get up you only have to wait an hour in the AM till feeding time (unless you eat in your sleep).  When I had my spleen pain,  they suggested Aleve I believe (could be mistaken--give a call to you CML onc), but I am going with THC (Marinol).  The others (ibuprophen et al) can do damage to liver function, and my liver numbers are still messed up enough.  They tend to get messed up by the TKI meds I believe.  The Marinol (now generic) is much better tolerated by the body, and there is some evidence that they inhibit cancer cell growth as well.  But, that is just me.  I haven't tried it yet, as I want to stabilize my numbers before adding on more variables.  I get bone and joint pain, and nasty headaches occasionally.  Not debilitating, but bad enough to want gone.  I will not take Aleve, ibuprophen, etc.,  because of the liver effects,  I will just tough it out until the Marinol.   I am anxious to hear about other's thoughts too.  Take care, Jack

[Lori's okay]

HI Tim,

I'm also pretty new to Tasigna, on it for 1 month now.

I aim for 10am and 10pm and that's working pretty well.

Somewhere online I read that having food in the 3 hour window, especially food that contains fat, can increase the bioavailablitiy by 50 to 80% resulting in something of an overdose so I'm very careful about the no eating window.

Thanks for posting this thread, I'd wondered about the flexibility with the 12 hours, too.

A little note on side effects:  I really got the rash/sunburned face at 3 days followed by itching and hurting scalp, then a disturbing pounding pulse.  Went off it for a few days, surprised the onc wanted me to restart at the same dose...but it has worked out very well.  The pounding pulse did not return (EKG was normal) and the rash is already subsiding considerably.  I found it hard to believe the doctors when they said the side effects may settle down, but they seem to be doing just that.

Sure hope this works well for you!

Lori

[WoofWoof]

Hey Tim- I've been on Tasigna for just over 2 years. Initally it was 800mg/day but has been reduced to 600mg/day. I take mine first thing when I wake up (about 0600) and then about 5:00pm but sometimes it's closer to a 14 hour cycle.

See this link where it was discussed before and includes a statement from Dr. Druker:

http://community.lls.org/thread/9911

[NotJack?]

Thanks for the link WoofWoof,  Jack

[Dina]

I take mine at 7am/7pm schedule. The mornings are easy, when I get up I take my dose and then have to wait one more hour before eating.

Afternoons are little harder since I can't eat anything from 5pm till 8pm, but overall its not that bad.

Dina

[Pinkbubbles9642]

Hi Tim! I was just put on tasigna on Friday I haven't started it yet per it has to be mailed to me I should be starting Monday or Tuesday when it comes. I go to University of Michigan cancer center and my specialist said anywhere between 8-12 hours when taking the pills, and the great thing about tasigna is if you happen to miss a pill you're only missing half your daily dose rather then the full thing like gleevec or sprycel. I was on Gleevec over a year and it hasn't been working, I was put on tasigna as a last resort and I actually am being sent to a transplant doctor at UOFM in 2 weeks to start the process of getting that set up. So I as you am praying for the med to work, because I'm only 21 they are more pushing towards the BMT then keep forcing me through all these clinical drugs and other tki ones.

I was also told on tasigna I'm allowed to take my pain med that I was currently taking before, Vicodin, which is a tylenol based drug so you'll be ok : ). He also stated I could take IB PRO. As you stated this is not a fun club to be a part of but I am so glad I found it three weeks ago because the people on here have helped me A LOT! If you ever need someone to talk to just ask, we are all here for ya and help!

<3 MJ

[jenz]

Tim,

I took Gleevec for around six months and then switched to Tasigna which I have been on since.  Tasigna in the beginning brought a lot of side-effects but slowly they have gone and some are circular but you learn to deal with those.  Initially I started on the 10 AM/10PM time for Tasigna and then after several months of struggling with that schedule I switched to 6AM/6PM.  The 10/10 forced me to have to fast six hours of the day rather than just in the evening dose.  So I set my alarm now for 6 AM to get up and take the Tasigna and go back to bed for an hour and then I am able to eat whenever I want.  The 6 PM works for me then because I work full-time and fasting between 4-6 PM isn't a big deal.  I try to stay as close on schedule everyday to take the medicine but some days I end up flexing my schedule to have dinner with people. I have heard from various people that give or take a few hours it should be fine it better to take it later or earlier than not at all of course.

Regarding food, I of course follow to directions explicitly, 2 hours after eating and 1 hour before I do not eat anything.  The 2 hours after I typically drink whatever I want, tea, coffee, water and whatever else. Then the hour after I have taken the Tasigna I try to just stick to water but sometimes find myself that even hard to do and stick to tea.  I know the one thing I have not done is drank coffee or pop after taking it just because of all the acid in my stomach from it with the medicine.

I will say my suboptimal results on Gleevec (after six-months) have turned into MMR results on Tasigna (after six-months) so I could not be more thrilled with how Tasigna has worked out for me.  I will say to make sure you get your EKG after 7 days of being on the medicine just to make sure your heart is not effected by the medication. I also asume you got a baseline done before you started it too.  I also have got subsequent EKG's at 3, 6months just to confirm that I have continued to remain OK on Tasigna. 

The only side effects I can really complain about is the fatigue, muscle cramping, and bone pain.  Sometimes the bone pain in my hips and particularly in my shins is just terrible and I am forced to take Advil to help.  I try to avoid taking additional medication but sometimes it is just necessary. I also can complain about the stiffness in my joints, I am 27 and when I wake up every morning I feel like an old lady with arthritis or even look that way when I hobble around sometimes.  This is of course due to the medication but all I can say is the alternative to not taking it makes these side effects tolerable and kept in perspective.

[Tim76]

Thanks to all that quickly replied to my questions. I feel much better knowing there is some wiggle room on the 12 hour rule. The 2 hour and 1 hour is a little tough sometimes. What about 1:50 or 45 minutes? How close to the edge can I get? Thanks also for Advil and Marinol advice. I'll have to get some.

One thing I wanted to mention in my earlier post was that I had a bad side effects coming off Sprycel. I stopped taking it on 12/01 (Thursday). By that weekend, I had a beet red face and my face and scalp kept peeling, really bad. Nothing else in my surroundings or diet changed. Moisturizer and dandruff shampoo didn't help. I live in the northeast, and the weather was and has been very mild. I even went to Florida the next week and the problem continued. I called my ONC and the Sprycel hot-line and they said no one ever reported a side effect coming off Sprycel. The peeling/flaking never got below my neck. About two weeks ago it finally cleared up, which is about the time a chest x-ray showed no more fluid around my lungs from the Sprycel.    

[hannibellemo]

mj,

Glad to see you are posting to help others!

What reaction were you told sprycel has with vicodin that would keep you from using either? I can't find any interactions on drugs.com. Am I missing something? I personally have taken vicodin for pain after surgery while on sprycel. Just wondering...

Pat

[Pinkbubbles9642]

I didn't say my doctor said sprycel had a reaction with vicodin, if I gave that impression in my post I apologize. It was the ib prophine based meds that my doctor said I couldn't take with sprycel.

[NotJack?]

OOps! My bad.  No Marinol for me.  Apparently only prescribed for nausea around here, and then sparingly.  It seems that synthetic THC in pill form uses the liver for assimilation  anyway (as opposed to vaporization through the lungs with the traditional herbal remedy, which is not allowed in MN).  You also get the additional benefit of a number of other cannibinols that have been shown to have cancer fighting effects with the medical mj.  I guess that I will just forego pain meds until such a time that it is worth my while to deal with it on my own.  I have been a carpenter for too long, and used too many pain relievers (putting strain on my kidneys and liver),  to use them as an option anymore.  After a couple of weeks of nasty heel and leg pain (which I have tried to deal with with orthotics and stretching to no avail), as well as short lasting, but piercing headaches,  things seemed to have bettered themselves this week.  Maybe I am barking up the wrong tree anyway.  Does anyone have any success with taking the edge off the pain with Marinol or MM?  Jack

[matt92711]

Tim,

I would assume that the 2/1 hr window is based on clinical data. It is for your benefit to make the time frame work as by avoiding the elevated levels of Tasigna in your blood you will help minimize the side effects. Obviously, there are people who take 400 mg at a time as opposed to the standard dose of 300 mg so a 33% increase in Tasigna is probably not deadly, but it does increase the side effects. If there is a rare occasion where you forget and eat before the 1 hour is up, it is probably okay, but if you want to make it a regular thing, you will increase the possibility of getting side effects. Regarding the timing, if you need to you can always adjust the timing a couple of hours either way, but doing this as the norm rather than the exception you may end up missing doses which is not a good thing if you want the drug to be effective. I normally end up on the weekend adjusting my dosing schedule to accommodate my schedule better, however during the week I am pretty good about taking it at 12 hr intervals (I do it at 6). I find taking in the morning on waking up is best as it avoids having to wait 2 hours 2 times a day.

[Tim76]

Matt,

I much appreciate your reply to my post. I realize that precautions, dose levels, and side effects are based on those patients that braved the clinical trials. But, the 2 hours, 1 hour and 12 hours between doses are arbitrary, easy to remember numbers. The people that responded before you had a chance to ask their ONC's and some of the keys ONC's in the fight against CML, what times are important and which ones can be fudged.

I remember being so scared before starting Gleevec. The nurse that gave me my teach session kept stressing to take it with food. I asked how much. Did I have to go to an all-you-can-eat buffet or would a couple cookies or 8 oz. yogurt in the morning be enough. Of course, she didn't know and I'm sure my individual digestive system was important. In five years, I found that the cookies or yogurt were enough for me. On two or three occasions where I took Gleevec before going out to eat, rather than taking the pill in a restaurant, I actually threw up the pill within about 20 minutes. My stomach knew something wasn't right.

In nine days on Tasigna, I still feel great. I have found taking the first dose upon waking the easiest and then waiting one hour to eat. I take my second dose about 10 hours later, before leaving work, easily two hours after lunch. By the time I get home, look at the mail and hear my voice mails, I can eat.

Again, much appreciate your reply and all the others before you.

Tim

[markmendonca]

hi i am mark from boston mass..i have cml  i was told last july 2011 and they but me on Tasigna 800 mlg a day . i stoped 1 1/2  months ago for two weeks liver count to come back down . then started back at 600 mlg a day  and i aways take it at 7  am and 7 pm. just so everyone knows the doc told me not to eat 1 hr before meds and 2 hrs after. i just found out we r to take tasigna like this...... not  to eat anything 2 hrs before and 1 hr after..... so is that a kick in the head. what sucks is the hair loss and now  as of 1-10-12 i am feeling sharp pains feels like mild  on my lift and right sides don't no what it is yet may not have to do with anything but need to ask and check it out .. thanks Mark Boston Mass.