8 replies to this topic

[alc999]

I just got my latest PCR back, and I'm at 0.2 % IS. It's been a little over 2 years since my diagnosis, and I have yet to get below 0.1% on Gleevec. And for the last 6 months, we upped my dose to 600 mg a day to see if that did the job. I had asked my doctor if we could try upping the Gleevec instead of switching me because I was tolerating it so well. But I think it's time for me to agree with him and switch me to a second generation drug.

 

Any advice from those who have switched from Gleevec to Sprycel or Tasigna?

[Buzzm1]

alc999, in that your PCR reading is at a relatively low level, it should not be necessary for you to begin another TKI at the normally prescribed dose; I would lobby hard for a significantly reduced dose, regardless of which TKI your onc. puts you on.  Good Luck!

[Trey]

I would switch to any other drug.  At some point necessity is not as important as the patient feeling in control of the disease. 

[scuba]

Consider switching to low dose Sprycel (40mg starting) and have your PCR re-checked after six weeks. If your PCR remains the same, you might increase dose to 60mg and re-test.  There is a good chance your PCR will drop. If it does drop, you might be able to lower your Sprycel dose to 20mg as maintenance and continue as before. Starting low and working up is a different approach than in the past regarding TKI's. It is only workable when PCR's are already low (i.e. < 1.0%) and blast cells are at or near zero.

 

Tasigna is likely to work better than Gleevec, but is similar to Gleevec in how it targets CML. Tasigna also has time limits set on when you can eat or not eat. Sprycel can be taken any time - with or without food and does target CML differently than either Gleevec or Tasigna. 

[kat73]

I had no trouble at all going directly from my last Gleevec pill to my first Sprycel.  No Sprycel headache.  Sprycel really zoomed the PCR downwards immediately.  (Like you, I still wasn't MMR approaching 2 years on Gleevec.)  All my Gleevec side effects were much, much better on Sprycel.  This was five years ago, and the starting dose was commonly 140 mg  or 100 mg then - they seem to start lower now.  I started at 100 mg and two months later reduced to 70 mg, which made my RBC et al come up nicely close to normal.  Am currently at 50 mg because of pleural effusions.  I had some weird bouts of skin rashes that were cyclical with the Sprycel for about a year, no real biggie, left and never came back.

[Marnie]

When I switched from 400 Gleevec to Sprycel, I asked my onc if I could start on 50 mg rather than the standard 100 mg.  I took a week drug break from Gleevec before starting Sprycel and had very little Sprycel headache.   I did 50 mg for a couple of weeks, I think before moving up to full dosage (100 mg).  I did have issues with pleural effusion at the year and a half mark.  I'm currently on ~25 mg Sprycel (splitting 50 mg tablets) and am maintaining good PCR levels, though have lost PCRu this last round of testing. 

 

Good luck with the switch.  If you go to Sprycel, I would highly recommend that you discuss with your oncologist taking low dose, perhaps starting at 70 or 50 mg and then working your way down to as low a dose as you can to maintain reasonable PCR numbers. 

[alc999]

Thanks everyone for the input! We've decided to start me on Tasigna. We'll see how it goes!

[cmljax]

Let me know how you do on Tasigna.  I have had great response, but a few serious and a few not so serious side effects - we are all different, but give it a good 6 months before you decide to switch again if you can.  I just lowered dose to 450 on 3/10/17 - PCR on Wednesday.

 

Good luck to you

[JPD]

Check my signature for my journey.  Turtles exist.  I know its depressing AF, but you are okay.  Take the pills and live your life.