9 replies to this topic

[garfonzo]

Hello All, thought i would post this as a topic to see what you think about my response pattern. Originally posted this in the Slow Responders Survey.

you could describe me as a slow responder. I've posted my results below. I banged around with Tasigna for a couple of years before switching to Sprycel 5 months ago. Saw some nice decreases and thought I would finally get to MMR on my last test. Was surprised to see the increase but I had switched my dosage time to AM and an empty stomach and wonder if that affected the absorption. Not to mention some extreme outside stress happening at the same time.

I test again at 3 weeks to see if it is a trend or not. I have switched back to PMs and with food.
I'm curious what everyone thinks about my result curve so far.
Thanks

Date, % IS Drug , Dose amount , AM or PM
Diag 01/22/2013
7/24/2013 2.889 Tasigna 600
10/23/2013 2.442 Tasigna 600
1/24/2014 2.497 Tasigna 600
3/5/2014 2.158 Tasigna 600
6/4/2014 1.319 Tasigna 800
9/3/2014 0.982 Tasigna 800
12/8/2014 0.845 Tasigna 800
3/16/2014 1.984 Tasigna 800
4/27/2015 0.802 Sprycel 100 PM
6/22/2015 0.277 Sprycel 100 PM
8/24/2015 0.466 Sprycel 100 AM
9/14/2015 ???? Sprycel 100 PM

[Yougotafriend]

Looks like the new meds are doing a good job hope for a continuous downtrend for you

[kat73]

I agree. You will get used to these small bounces.  The "noise" in the test.  Anything to the right of the decimal point is good; add a zero between the decimal point and the number, it's great.

[garfonzo]

Thanks guys. Depending on the next results, my onc may up my dose to 140mg or try to switch to Bosulif. I don't think I'm ready to switch again so soon. I feel safe under 1% but would really like to get to MMR.

[chriskuo]

MMR is a milestone, but it is somewhat artificial. Being somewhat above or below is not a big difference as long as you don't lose CCR.

Unless you have a large bump this time, I would recommend giving the current dose of Sprycel a year before upping or switching.

[garfonzo]

My thoughts too Chris.
One way I look at it is that it increased .189 points. If it had gone the other way I would be MMR .088.

The other way to look at it is that it increased nearly 60%.

What is more important at these levels, the points move or % move? I definitely wouldn't be concerned if I was at .002 and doubled to .004. I wonder what is the PCR level that substantially increases the odds of disease progression if you go above it?

[Trey]

Single PCR moves should always be reconciled with another PCR result.  Although the recent PCR could be an aberration upward, it could also be that the previous PCR was the aberration downward (too low) which would make the recent one about right.  We always want to look at the rising PCRs as the aberrations, but that is not the correct viewpoint.

 

Loss of 1 log is only considered significant if CCyR has also been lost, which is not the case for you.

[garfonzo]

Yes very true Trey. We always trust the good results and doubt and want retest the unwanted results.

[garfonzo]

I learned from this forum the importance of consistency in detecting trends. For the past year I always draw blood on Monday mornings. Quest lab processes it and the doc has the results by Thursday AM. I call in to get those with sweaty hands. The next Monday I go in for the office visit and discussion.

[garfonzo]

Hi all here's an update. Last test showed a renewed downward trend after 3 weeks of switching back to taking the Sprycel 100 with food during the day. The previous increase was after switching to an empty morning stomach.

I could actually feel some of the minor side effects return such a a little hand and foot numbness and aches. These had gone away when I was taking it in the AM.
Defineatly think the time of day or with/without food effected the absorption rate. That plus I fell very anxious and stressed in the mornings anyway.

Or the results may just be statistically plateaued. At least they aren't jumping up :-)

12/8/14 0.845 Tasigna 800
3/16/14 1.984 Tasigna 800
4/27/15 0.802 Sprycel 100 PM
6/22/15 0.277 Sprycel 100 PM
8/24/15 0.466 Sprycel 100 AM
9/14/15 0.365 Sprycel 100 PM