15 replies to this topic

[rct]

So, what would the Tasigna takers do?

In short, 4 years of Gleevec, first two as "good" as it can be, these last two up and down with neutropenia and the use of Neupogen.  Druker says don't change drugs, our oncs want to at least try changing drugs in an effort to keep a really good remission and NOT use neupogen.  So we are going to try, because if we don't we can't even say at least we tried.

After this weekend without any TKI at all, Mrs starts Tasigna this Wednesday.  It is good to see her even after only a few days without Gleevec there is a difference, it is so good to see.  But it won't be for long.

So how do you folks manage the no food thing?  First thing in the am is good, but do you have a cuppa coffee?  What's "food"?  Is the milk in yer coffee food?

And what about that food?  We have sometimes complex Food Hoops to help out with the nausea associated with Gleevec.  Everyone reacts differently to different meds I know, but if this stuff is even remotely as nauseating as Gleevec this can't last, it won't stay in her without food.

Night time for the second dose.  I believe the propaganda all says 12 hours between, just wondering how rigidly that is followed.

Anything to avoid at all costs?  Anyone?  Occasional, like very occasionally rare, Martini ok?  Docs never have bothered her about going out to dinner and having one here and there, don't know if that'll change or not.

Anybody actually having heart problems, QT or not?  Had the whole EKG thingy done couple years ago when they suggested there MAY be some heart troubles related to Gleevec, all was well then, have EKG scheduled for next week, 7 days after starting.

If you were a Gleevec taker for a couple years and went to Tasigna for reasons outside of failure, how are you doing comparatively?  Fatigue, pain, skin troubles, all of it, how does it compare in a few sentences?

Thank you all for reading, and even more if you got some answers, and even morer morer if you got stuff I didn't write about.  We are not at all thrilled about this, nobody in their right mind would be.  The best that can happen is continued level of remission without the super low counts.

rct

[Trey]

The reason Novartis says Tasigna should not be taken with food is all about the QT heart prolongation issue.  They claim the taking Tasigna with food can increase the dosage levels in the body, and higher dosage would theoretically mean some amount of higher risk of having a QT issue.  It is similar to the grapefruit issue with Gleevec, except that Novartis is very concerned about people taking a higher dosage than prescribed because of this QT issue.

While I would not presume to counter the drug maker's dosage instructions, and patients should comply with their instructions, this seems like a legal CYA more than science to me.  Given that, the "no food" issue likely has quite a bit of flexibility over the small issues.  I can only say that if it were me taking the Tasigna, I would not worry about the small stuff.  I do not like taking any medication on a completely empty stomach, so I would probably eat a cracker or something very small with it, but that is just what I would do.  One would need to ask themselves if a cracker, or milk in the coffee, or some other small morsel taken with the Tasigna would cause a serious heart issue, then the drug should not (and most likely would not) have been approved.  The problem is that Novartis does not trust people to avoid foods that would increase drug plasma levels (grapefruit, etc), so they take the easy (and legally safe) way out by banning all food.  Seems a wee bit silly.

http://www.drugs.com/pro/tasigna.html

Tasigna FAQs:

http://www.us.tasigna.com/info/frequently-asked-questions.jsp#q5

Otherwise, trying the Tasigna to get away from the Neupogen/Neulasta seems like a reasonable idea.  You never know until you try it.  Maybe it will help, and maybe not.  She can always go back to Gleevec.

Others can provide their personal experience.

[hannibellemo]

http://community.lls...d/6070?tstart=0

Tricia indicated in a previous post from people new to Tasigna (see link above) that she messed up a couple of times with the food issue and said she paid for it with heart palpatations. That made me think right then that I would not be switching to nilotinib anytime soon if the food timing issue is that delicate. (I'm definitely NOT thinking of switching from Sprycel!)

Pat

[CherylLynn]

It seems that this question is perfectly timed for me...I was on 800/mg/day of Gleevec, had a slip in my log reduction, was switched to Sprycel 2 weeks ago and dealt with aweful side-effects that landed me in the ER today for pleural effusion...local Dr. has now switched me to Tasigna starting tomorrow...and didn' mention anything to me about the QT prolongation or the fact that it has to be taken on an empty stomach...food with the Gleevec is what I think made it so easy for me to take...and I get heart palpitations with drugs like indomethicin..so now I'm wondering about this...there was also no mention to me of a EKG to check for possible heart problems...I know that I have a murmur - does anyone know if that will be a problem on this drug?...the last two days has been very uncomfortable for me to say the least with the shortness of breath and chest pain from the effusion...after spending the better part of today in the ER I was given a script for lasiks (sp?) for the next five days..I emailed the local Onc. since she is on vacation until August and her nurse called today to say that I will start the Tasigna tomorrow...I took my last Sprycel last night - will that be enough time to get the Sprycel out of my system? when she switched me to Sprycel from Gleevec, I had taken a 400mg Gleevec in the morning and she told me to take a 70 mg Sprycel that evening...needless to say I had huge nausea, vomitting and diarrhea that has lasted  the better part of 2 weeks...someone on another CML site suggested that I should have waited a few days before starting the Sprycel to make sure the Gleevec was out of my system...will the same be true for the Tasigna?

Lots of questions, and would be appreciative of any suggestions for starting this medication - what to do, what not to do...

Cheryl

[Trey]

When switching drugs most Oncs will require a 2 - 3 day break between drugs.

Your Onc had you take 70 mg Sprycel on the same day you had already taken 400mg Gleevec.  That is over-dosing.  Sprycel dosing is based on the fact that it has a half-life in the bloodsteam approx 5 hours.  But Gleevec half-life in the bloodstream about 18 hours.  It takes a couple days for the Gleevec to completely clear out.

Here is what Novartis says about starting Tasigna:

Your doctor should check your heart with a test called an  electrocardiogram (ECG):

• Before taking TASIGNA
• 7 days after starting TASIGNA
• Regularly during treatment
• After any dose changes

http://www.us.tasigna.com/info/important-safety-information.jsp

http://www.us.tasigna.com/info/tasigna-education.jsp

[CherylLynn]

Thanks for the info Trey.

I have emailed my local Onc. and asked about the ECG testing and requested that she order it if it has not already been done.

I wish that I could trust her and not question what she does, however, since she purposely didn't tell me about the chromosome deletion I am very hesitant.

Cheryl

[Gene]

Hi RCT,

I have only been on Tasigna for a week but I have already learned a few things about the drug.

So how do you folks manage the no food thing?  First thing in the am is good, but do you have a cuppa coffee?  What's "food"?  Is the milk in yer coffee food?  And what about that food? 

For me, I always had a problem with food and Gleevec. Before Gleevec, I was a light eater with lots of salads (high alkaline diet).  After Gleevec, I would try to eat heartier meals to fend off the nasea and sharts (high acidic diet).  If I didn't, I would surely pay.  So returning to my normal state of eating has been nice with Tasigna.   I haven't had any GI issues with Tasigna so I can eat foods/drinks that I avoided with Gleevec (coffee, marinara sauce-just the ones I tried this week).   I only drink water with Tasigna (morning & night) and lots of it.  One hour later in the morning, I have my cup of coffee to fend off the headache.

Night time for the second dose.  I believe the propaganda all says 12 hours between, just wondering how rigidly that is followed.

Until my body adjusts to the medicine, I'll follow it rigidly.  I ended up in ER with a terrible headache/migraine.   It started two hours after my morning pill on day 6.  I had read other people experienced headaches the first weeks.  I was no different and experienced headaches on days 2,3,4 and 5 but this headache (on day 6) turned into a pounding pain in my head.  I lost control of my body.  I couldn't see straight.  I couldn't walk straight.  Any light was painful.  Any sound (even from far away) was unbearable.  I felt naseous.  I also felt like I wouldn't make it to the bathroom.  I cried uncontrollably.  My husband was scared and took me to ER.  I was ready to throw in the towel on Tasigna.  Six hours later the headache eased.  My tests (blood, liver, EKG) all came back normal and I was on my way home with a prescription for hydrocodene which I filled but haven't used.  The ER doctor spoke with an Onc on call and wanted me to continue Tasigna until I could get a hold of my Onc.  They were certain it was a reaction to the Tasigna and wanted to give it time.  I took Tasigna later that same evening (albeit I was scared).  The next morning I did modify some things.  First, I recognized that I never had a headache during the evening dose, usually slept like a baby.  Speaking with my Onc today, he thinks the time between my evening and morning dose is too close.   Timing is everything.  The day I landed in ER, my husband and I were out late the night before and I didn't take my evening dose until 11:30 pm.  I took my morning dose right when I woke (7am).   This was only 7.5 hours and was probably too close.  Since then I have been trying to keep the times more consistent.  I sometime don't take my morning dose until 9 am.  An hour later, I follow the pill with a cup of coffee (a migraine remedy, I've learned) and headaches haven't materialized in day 7 and 8. 

Occasional, like very occasionally rare, Martini ok? 

I haven't tested this so I would be curious too.

If you were a Gleevec taker for a couple years and went to Tasigna for reasons outside of failure, how are you doing comparatively?  Fatigue, pain, skin troubles, all of it, how does it compare in a few sentences?

I was only on Gleevec for 9 months.  Besides the GI issues and neutropenia, I liked Gleevec.  So far, no GI issues, no rashes, no fatigue.  My onc went to Tasigna to try to maximize my results.

Hope this helps.

[simone4]

rct, this is only a faintly interesting observation, but has Dr. Druker ever tried lowering

her Gleevec dose to 300mg.?  He may not be of that school of thought, but my onc, who

worked with him on the original clinical trials, tried this with me one year ago.  Yesterday

my counts were normal for the first time in 18 months. However, they did begin

to climb after the dosage was reduced.

Hope all goes well for her on Wednesday. Maybe T. will be a better friend than G.

Simone

[rct]

Yes, she has been at 300 for quite some time, and Druker was ok with that too.  Fingers crossed and Thank You!

rct

[rct]

Thank you very much Gene, it helps an awful lot.

rct

[soundoff]

Hi Rct,

I follow the Tasigna instructions to a tee, don't eat anything 2 hours before even a cracker... and wait until 1 hour after to start eating.

I would also take a lower starting does like 400 mg in the morning and 200 mg at night. That should keep the counts up otherwise your counts will crash.

You can private mail me if you would like and we can chat about it. Iv been on Tasigna for over 4 months now.

Soundoff

[CherylLynn]

I started taking the Tasigna this morning...first dose at 9 AM (400 mg) next dose tonight at 9 PM (400 mg)

I waited an hour and then ate, but I did take the pill with cranberry juice and not water...the side-effects for me with Sprycel were immediate, but so

far today (it's 3 pm now) I'm feeling good - no headache yet or diarrhea...the timing of my supplements will have to change some, but should be ok

if I can stick to this time schedule.

Cheryl

[Pika]

You should have been given a EKG prior to you starting Tasigna.  And you are supposed to get one 7 days later after started, and then periodically, and during dose changes.

[pcal]

I think you have the timing on Tasigna reversed.

You should not take it within 1 hour before eating, and wait 2 hours after eating before taking it,

not the other way around.

[hannibellemo]

pcal,

Refer to Trey's link: http://www.us.tasign...uestions.jsp#q5

It definitely says no tasigna within 2 hours before eating and 1 hour after eating.

Pat

[Pika]

The phamphlet that came with my Tasigna has these statements in it:

You may lower your chances for having QTc prolongation with Tasigna if you:

take Tasigna on an empty stomach.  Do not take Tasigna with food.

Take Tasigna:

-  at least 2 hours after eating any food, and

- wait at least 1 hour before eating any food.

and then on another page:  Do NOT take Tasigna with food.  Take Tasigna at least 2 hours after any food and then wait at least 1 hour before eating again.

The "Take Tasigna"  should be in the mention of time, perhaps that will assist in clarity.

Since my counts still won't cooperate after various medicine gyrations for the last 2 years, I 'm taking a ride on the Tasigna bus.  Hope I survive the trip.