9 replies to this topic

[rct]

Mrs has been wrestling with Gleevec for over 9 years now, and it isn't getting any easier.

Recent attempts at reduction have worked well down to a point, PCR starts back up.  So she has been at 300 a day for most of this year, stays PCRu at that.

 

The side effects are debilitating at the least, after 9 years they are nearly unliveable, and I am aching for her.  She is thinking about changing, and the good stuff about off label use of Tasigna was a little bit of a nudge for her.  We will take it up with the onc in December, just start talking about it so she can get used to the idea.  No sudden moves here, it's been slow and steady since 2006 so you go with that if it is working.

 

Tell me, anyone, of your Gleevec to Tasigna change.

 

Thank You.

 

rct

[scuba]

rct - when her PCR nudges back up - what is the value?

[rct]

In recent years not much to talk about numbers wise.  Long time ago we saw what a couple weeks off would do, and that was a fairly rapid rise from .00x to .x, so we don't let it go long enough, we know what will happen.

 

rct

[kat73]

rct, please forgive me if I'm going over previous ground, but is switching to Sprycel a possibility?  I was totally miserable on Gleevec for two years, but the switch to Sprycel was like night to day for me.  (A GRAY day, not a SUNNY day, but nevertheless. . . better.)  I have been under the impression that Tasigna is "just a stronger Gleevec" but I could be completely (probably am) wrong.

[jjg]

Switching from gleevec to tasigna saw a significant improvement in QoL for me. Would definitely recommend giving it a try...

[rct]

rct, please forgive me if I'm going over previous ground, but is switching to Sprycel a possibility?  I was totally miserable on Gleevec for two years, but the switch to Sprycel was like night to day for me.  (A GRAY day, not a SUNNY day, but nevertheless. . . better.)  I have been under the impression that Tasigna is "just a stronger Gleevec" but I could be completely (probably am) wrong.

 

Yes, Spyrcel is also a possibility kat73.

 

rct

[Marnie]

My side effects on Sprycel are far less than those on Gleevec.  I'm keeping reasonable numbers at half dose of Sprycel (50 mg).  When she makes the switch (if she makes a switch), be sure that she takes a drug break before starting the new meds (mine was a week, I think), and start at a lowered dosage, if possible.  Sprycel is notorious for severe headaches at the start, but reduced starting dosage kept the headache tolerable for me.  Full dosage for a couple of years resulted in pleural effusion, so my doc is now content with half dosage and not quite PCRu.

 

I hope that a switch of drugs, whichever one she chooses, helps.

 

Good luck,

Marnie

[kat73]

I'll add on here to Marnie - I was prepared to get "the Sprycel headaches" but I never got a single one, so - you never know.  (Until you try.) I also didn't take any time off in between, although many experienced people here, like Marnie, advocate doing that.  I certainly see the logic.

[rnowinski]

Mrs has been wrestling with Gleevec for over 9 years now, and it isn't getting any easier.

Recent attempts at reduction have worked well down to a point, PCR starts back up.  So she has been at 300 a day for most of this year, stays PCRu at that.

 

The side effects are debilitating at the least, after 9 years they are nearly unliveable, and I am aching for her.  She is thinking about changing, and the good stuff about off label use of Tasigna was a little bit of a nudge for her.  We will take it up with the onc in December, just start talking about it so she can get used to the idea.  No sudden moves here, it's been slow and steady since 2006 so you go with that if it is working.

 

Tell me, anyone, of your Gleevec to Tasigna change.

 

Thank You.

 

rct

I was on Gleevec for a year and the the side effects were a b##ch. I was then switched to Tasigna. I did exactly as I was suppose to. I took it at the same time everyday, I did not eat 2 hours before or 2 hours after taking it, And I drank a ton of water. Within 2 months the Tasigna caused liver damage. I was then switched to Sprycel. LOVE IT. However, my left leg is having trouble with water around the bone. It is so painful that I can barely walk. They do not know it is the Sprycel or a vertebrae disk. I am going to an Orthopedic tomorrow. I hope it is not the Sprycel because I have not had any other side effects.

[soundoff]

I was on Gleevec for about 3 months before the switch to Tasigna. I'm PCRU now after 5 years. Make the change and don't look back.