8 replies to this topic

[leejoshuajohn]

Hi Everyone, 

 

     So I got some disappointing news today. I have historically been a pretty slow responder. I am almost 4 years out and have been bouncing around MMR the whole time. My most recent PCR results just came back at .22% on the international scale or a 2.65 log reduction. This was my first test done at a new lab at the Univ of Wisconsin Madison. My last test (done at the end of may) at the blood center of Wisconsin showed .066% or a 3.2 log reduction. It's around a .5 log difference and I know that is a margin of error and that I did SWITCH labs, but my onc. wants to bump my Sprycel up to 140 mg. I've been  in CCYR for almost 3 years so I'm not terribly concerned, but of course I am worried about this bump. He said that as long as we have room to improve and the tools to do so that we should go for it.  What do you all think? -Josh 

[Marnie]

140 mg will increase the risk of pleural effusion, so if you do bump up your dosage, be sure that you monitor yourself for symptoms. 

 

Good luck!

Marnie

[Trey]

I would do a short cycle re-test at the new lab.  If no additional increase, then probably just lab specific variations. 

[leejoshuajohn]

Trey, 

 

    Do you think this is a pretty significant increase?

[leejoshuajohn]

Or do you mean short cycle retest instead of upping the dosage?

[LivingWellWithCML]

A couple of years ago, I had my PCR jump from 0.04% IS up to 0.12% IS, so not too much different than what you're experiencing (I'm on Gleevec 400mg).  Doc told me not to panic, stay the course and do a 6-week re-test. Re-test came back with the identical result, 0.12% IS, so once again, stay the course, then test again in 3-months.  That test came back at 0.08% IS then steadily dropped/fluctuated a bit below MMR for a while, rose a little, then dropped into undetectable.  Throughout that whole point of my journey, we kept the dose the same.  There was no established trend to justify the risk of a dosage increase, so we stayed the course.  If my PCR had continued rising, then we would've considered dosage increase or TKI change.

 

Before considering a dosage increase (and increased side effect risk), it might be worth considering a 4 - 6 week PCR re-test first.

 

Hope that helps!

[Trey]

Josh,

It is not a significant increase given the change in labs.  If there were no change in labs I would be a little more "watchful" but by no means concerned until I saw another PCR for trend analysis.  The next PCR should show a more clear trend.  Even though various labs set an International Standard, that does not mean they are "standardized".  They are still very different in their results.

[scuba]

Hi Everyone, 

 

     So I got some disappointing news today. I have historically been a pretty slow responder. I am almost 4 years out and have been bouncing around MMR the whole time. My most recent PCR results just came back at .22% on the international scale or a 2.65 log reduction. This was my first test done at a new lab at the Univ of Wisconsin Madison. My last test (done at the end of may) at the blood center of Wisconsin showed .066% or a 3.2 log reduction. It's around a .5 log difference and I know that is a margin of error and that I did SWITCH labs, but my onc. wants to bump my Sprycel up to 140 mg. I've been  in CCYR for almost 3 years so I'm not terribly concerned, but of course I am worried about this bump. He said that as long as we have room to improve and the tools to do so that we should go for it.  What do you all think? -Josh 

 

Hi Lee,

 

140 mg of Sprycel is a lot of Sprycel. Pleural effusion and other side affects are very real at that dose. The error range in PCR testing at MMR is huge - 1 log at least - especially when trying to compare from one lab to the next. You should consider a few cycles of consistent testing to see if a trend develops. Less drug is better when it works than more drug. 

 

I am on 20mg of Sprycel at 0.01% PCR M.D. Anderson scale (they're special for some reason), which is about 0.003% I.S. Sprycel is powerful and can work at very low doses.

 

There is a lot of art to how this science is practiced. Sort of like global warming.

[pammartin]

I took 140mg Sprycel for a few months after I was diagnosed in 2011.  It was a difficult journey and the side effects were significant.  I would be very reluctant to once again take that high of a dose.  Just tossing in my experience.