8 replies to this topic

[cmlquestions]

I posted a question back in March of this year about resuming treatment on Tasigna, but at 450mg once daily after a seven-month break from treatment due to a variety of side effects on the normal dosage of Tasigna, followed by bad reactions to two single doses of Sprycel.

I had lost MMR prior to resuming treatment, but after less than three months on the new dosage, my BCR/ABL is "undetectable" for the first time!  That is awesome news for which I am extremely grateful, and the once daily dosage schedule is certainly much easier to deal with.  The only problem is that many of my side effects have returned, and I am now having chronic, severe headaches.  I do have a history of migraines and TMJ issues that I'm sure are influencing the situation, but the headaches were not so much of an issue when I was on 300mg twice daily.

I am wondering now about cutting the dosage back further to 300mg once daily, or 150mg twice daily.  I am also wondering about "pulse therapy", or alternating periods of time on & off the drug to give me a break from the side effects.  My plan was to make it another two years at undetectable, then try coming off indefinitely, but these awful headaches are forcing my hand to make another change.  My hem-onc is looking into these matters, but since it's taking a while to hear back from him, and I'm feeling pretty miserable, I thought I'd see if anyone here has any info or opinions?

Thanks!

[Ray99]

I am also on Tasigna, 300mg twice daily, for the past four months.  During that period, I had a three week break and five week on half dose, 150mg twice daily, due to low platelet count (other counts are pretty close to normal range).  When on half dose, I do not feel any side effect at all.  But when on full dose, I do feel some muscle and bone pain occasionally. It does not affect my daily life. My PCR reading a month ago is 3.7%IS. It started at 73%IS four month ago. So far, TasignaI seems working fine.

If you can tolerate 300mg twice a day, why don't try to divide the 450mg dose into 300mg and 150mg every 12 hours.  I think 450mg in one shot is too much medication.  You can suggest to your onc to try half dose, 150mg twice daily.

[mariebow]

Ray99 I am on  half a dose also.  I had to be cut down from 300mg twice a day because of the bone and joint pain.  I have been taking Tasigna over four months now.

[Ray99]

Mariebow,

   I assumed that you started with full dose.  How long have you been on half dose?  And does your PCR reading drop during the half dose? 

   If and when I reach MMR or PCRU for some period of time, I think I am going to ask my onc for trying half dose.  On half dose is great, no side effect whatsoever.

[mariebow]

no, it did not drop it continued to get better. I have been on a half a dose for three months.

[Trey]

Half dose would be a reasonable approach, probably once daily due to the eating schedule.  Pulsed therapy would alternate full dose then zero dosage, each for a couple weeks at a time.  That would likely not help the headaches, since the body would constantly be shocked by the re-start. 

[Ray99]

Trey,

   Aside from convenience, is it more effective to split the dosage or take it all at once?  Or it makes little difference.

[Ray99]

It is nice to hear that PCR reading continue to improve on half dose.  How is the rate of the reduction of BCR-ABL?

[Trey]

Probably makes no real difference.