32 replies to this topic

[Floa7]

I was on Gleevec for 3 years, now been on Tasigna for 6 weeks. I have lost 12 #'s, I am not hungry. But when you drink water in the morning to take Tasigna and wait an hour, that's not bad but this 2 hours in the evening after dinner, no eating, then take Tasigna and have to wait another hour before I can eat. By the time those three hours are up I am over it. I just go to bed.

 

I know I was holding fluid while on Gleevec, that's some of the pounds I lost.

 

Does the same drug effects or pill you use the same with all TKI's? Statin drugs, pain relievers, etc....

Only one on my Tasigna instructions says to use antacids 10 hours before the Tasigna pill.

I do see my onc Doc in a couple of weeks, blood tests next week.

 

I don't miss that Gleevec, eye and ankle swelling gone, I don't even need my running shoes on for those sharts.....

 

My son had his Doc appt yesterday and his counts went from 0.015% to 0.006% He was switched to Sprycel about a year ago.

[JPD]

As for the timing, I take it around 10-12 hours apart.  Never worry about it being exactly 12 hours.  I take my pills about 8-10 AM which enables me to wake up, take my pill, drink coffee and then eat a late breakfast or early lunch (honestly I usually skip breakfast anyway).  Then I eat an early(ish) dinner and take my pill and have a snack later in the night.

 

Its really not that rough especially if you dont freak out about spacing it exactly 12 hours apart (Ive asked my onc about this and he is totally comfortable with 10 hour seperation).

 

As for antacids - I just chew Tums.  Treat it like I do food two hour/one hour.  Its the xantac/pepcid shit that we cant take (or have to take outside that 10 hour window you mentioned).

 

The only other meds you have to watch are anything that might increase the QT Prolongation stuff.  Just check with your doctor.  Not over the counter stuff, just scrips.

[JPD]

ps - Ive gained all my pre-cancer weight back ... which sucks, cause now Im gonna have to exercise

[Floa7]

Thanks for replying JPD Yeah,

I don't worry about the 12 hour spread, I take my pills when I get up and like you said have an earlyish dinner.

I needed to lose weight anyway, It was falling off when I got diagnosed. I didn't gain that all back. This 12 pounds I have lost put me back to when I got diagnosed.

I am drinking plenty of water again, got over that morning Pepsi, quickly, when I started these pills.

[patcanfield]

i take my tasigna when i get up ,i drink coffee and then an hr or so later i eat and sometimes i don't, then i have lunch, just don't eat 2 hrs before you take and then wait 1 hr before you eat. if i am going to have my evening meal about 7 i take at 5 and maybe i had had a snack at 4 or 4;30 just as long as u don't eat 2 hrs before med. most of the time it is more like 10 or 11 hrs between meds. 

[rcase13]

Tasigna taker here. It is working well on the CML so far. Was diagnosed in Oct 2014. It has trashed my thyroid but my endocrinologist seems to think we can manage it and stay on Tasigna. I hope so.

I take it 12 hours apart like clock work. Never late not even by a minute. 6am and 6 pm. OnC has said I can vary that a little bit but I am paranoid and too scared to try. I want maximum effect so I can someday maybe stop taking the drug or reduce dose like Trey and others.

I wish they would do away with the blister pack. I broke a pill open yesterday trying to get a pill out. Some of the medicine spilled out on my hand. I licked it up! Don't want to miss a single dose! This raises a question what do we do if we lose a pill? The thyroid makes me jittery and I dropped a pill. It of course rolled all the way under the bed. I was like all hands on deck! And we all raced to get the $400 pill!

[Billie Murawski]

Hi RC,

  I recently saw this tip on tv, use a hand can opener ,get it as close to the plastic as you can the pills will come right out. I tried this and it really works good I put the pills in an old medicine bottle and put masking tape around it and write all the info on the tape. This works great for anything that comes sealed in packages cds,tools, etc.

[JPD]

What IS the actual retail cost of Tasigna?  Anyone know?

[Floa7]

It depends on who you have insurance with. The insurance companies have contracts with the pharmaceutical company.

[dlb65]

Long time follower but first-time responding.

Been on Nilotinib (Tasigna) since diagnosed in May 2013. Tried all sorts of eating regiemes as I found nutrition is the key to combat the Fatigue. Tried my am dose upon awakening but produced nausea. Now I eat a protein heavy breakfast early,  take my am dose ~8, snack an hour later, and pm dose 2hrs. after dinner skiping desert and those late night cookies. Seems to work and control side effects of which I count 10.

1. Fatigue
2. Queazy
3. Head ache
4. GI disturbances
5. Temperature regulation (sweats & chills)
6. Itchy scalp
7. Lower & upper extremities (calves,feet & hands) muscle twiches
8. AM nasal congestion
9. lower tolerance of alcohol
10. And last but not least, Brain Fog

Thankfully I rarely have more than three side effects at once. I relate it to wack-a-mole with SE's just popping up for a while than just as mysteriously going away.

I had a great inital response but I am now stalled at a 2.5 log reduction.

Regarding cost of the drug-I'm in healthcare and I can tell you its a deep dark secret which we will never actually know. As for the blister pack, I wish they would go back to labeling the days as it made it much easier to keep track.

[rcase13]

Yeah I write the days on my packs when I get them. I start each pack on a Wednesday morning.

[Frogiegirl]

$9,040.00 for a 28 day supply regardless if its 200mg capsules or 150mg capsules. at least that is the cost for me  even if the insurance company has a connection or a "agreed" upon amount its close to that figure. there just plain expensive.

[story]

$9040.00 for 28 days here also. CVS was billing my insurance $19000 but the insurance co paid the $9K price. There has gotta be a better system than this. Good luck trying to divine the price of meds or god forbid, a procedure, ahead of time...

[MCPO]

I'm at $12,000 for 28 days.    The timing works ok for me with meals (I take it at 8-9am and 9-10pm).  However, the times I have a really hard time with it is for social events, when friends come to visit from out of town, and when I'm traveling.  I was recently out of state with a two hour time zone difference and for the first time missed two doses because I could not organize it around my extended family activities, the time zone change, and just remembering to think about when to eat/not eat/take meds.  When I am home in my normal routine, no issues, other than it being slightly annoying.  Oh, and yes, I hate hte packaging!!

[mariebow]

I been on tasigna for three years,fatigue,itchy scalp,wrinkly skin,some muscular issues, and my copay has gone up, my insurance company want me to get on gleevac or spycel or something else besides tasigna, these insurance sucks.

[rcase13]

LOL that is too funny. My doctor tried switching me to Gleevec because Tasigna is messing with my thyroid and it was denied. The insurance company didn't consider a thyroid problem a serious enough side effect to switch.

[Frogiegirl]

Rcase don't you love how insurance companies are now doctors and know what is best for us?  I should call them and see if I can get an appointment with them...seeing as how they make all the decisions anywhooo.

[JPD]

My side fx:

 

1) hair loss - legs, chest/stomach, a little on my face... already bald thanks to genetics so I dont know about me head.

2) a little occasional brain fog

3) infrequent fatigue

 

I guess I get off easy... though I forgot to mention...

 

 

 

 

 

 

 

 

 

4) wet farts 

[patcanfield]

i just started tasigna in sept. and i wonder if my pack is different from ya'll, mine is on a cardboard ,i can see them inclosed in plastic  but on the back you just punch the little tab and peel it back and the pill falls out, 

[chriskuo]

The retail price of Tasigna in the US is approximately $10,000.
Insurance companies have contracts with Novartis which may result in a reduced price.