11 replies to this topic

[Cool Hand Leuk]

Hi, I am curious if there is any co-relation between slow response and the time of medication.

Can any of those that have not achieved MMR within 1 year share what time of day they take their medication?

Thanks

 

[August1]

Hey Leuk,

(Cool screen name by the way.) I've been a slow-and-steady responder to TKIs. My WBC was 240,000 at diagnosis.  I started on Gleevac and switched to 100 mg Sprycel after 1 year mainly due to GI issues rather than response. I've always trended in the right direction but it took me about 14 - 15 months to reach CCyR  and after 2 years I was "close" to MMR at 0.2% (IS) but still not there. All my blood counts were normal and oncologists were happy but it was frustrating for me. 

 

Then, suddenly, I hit PCRU on my next PCR test 3 months later. I was totally shocked. Literally, my mouth dropped open when I read the report. To be honest a big part of me is already prepared to see that number bounce back up on my next test but, hey, it was a PCRU either way so I was thrilled. 

 

Looking back I did actually adjust my medication schedule to take my Sprycel in the morning when I have breakfast rather than at night. I honestly cannot say if it was the time of day that mattered or if I was just on one of the classic "response plateaus" that CMLers can experience. My thinking is both may be true and that digestion and activity may help me metabolize the drug. The schedule change also allowed me to take my TKI about 10 hours after my PPI (which I have to take for acid reflux).

 

Either way I'm certainly sticking with the regimen! 

 

Take care,

 

Bill

 

P.S. I think the latest standards look more for CCyR at 12 months and MMR at 12 - 18 months, but I've not checked up on that lately. 

[Melanie]

Hey Luek, interesting survey. I'm post Dx about 4.5 years and still not MMR. I take Bosulif at night with dinner. To be fair though, Bosulif is the first TKI I've been able to tolerate long enough to get a good response. I've been CCyR now for about 9 months and have been on 400mg of Bosulif for 2 years. I tried to take my dose in the morning, but always got nauseated. Haven't tried it again though in about a year. If your survey proves mornings might be better, I'll experiment with it again. Keep us posted on your results.

[Cool Hand Leuk]

Thanks All for your responses,

 

I am switching over to Mornings as of yesterday. I do like cream in my coffee, so I hope it doesn't interfere with the absorption. I really cant take black coffee. Maybe I will cut back from 2 cream to 1

[gerry]

I'm not sure that the time you take it impacts the uptake of the drug, unless you're taking/eating somethings else with it that might affect it.

I took my Gleevec in the morning (I was a fast responder) but I took it then due to one of the side effects that happened in the night. I used to get fluid retention in my throat tissues and I would feel like I couldn't swallow and was choking. Preferred to have fat ankles in the afternoon. lol

 

Good luck with the change. 

[Tedsey]

Hi, I am curious if there is any co-relation between slow response and the time of medication.

Can any of those that have not achieved MMR within 1 year share what time of day they take their medication?

Thanks

Have things changed?  Is MMR now expected at 1 year?  I thought it was 12-18 months for CCyR.  Took TKI before bed.  Have excellent response.  I have changed very recently to afternoon to see if it lessons the eye swelling when I wake.

[Cool Hand Leuk]

Hi,

It seems that a fast response is somehow related to being able to successfully discontinue medication, which is something I have been hoping for. I would like to have the old me back, at least the good part which is what seems to have diminished since starting the meds.

I know that sprycel is a drug that relies on stomach acid to be absorbed. After reading this

 

http://www.ncbi.nlm....pubmed/18248311

 

I decided to make the change to mornings

[alexamay09]

Interesting!  I suppose I am a slow responder having reached around 0.1 after 3 years - but I don't think of myself in that way.  However having read the above I think I will switch my dose to morning.  I used to do mornings with my previous drug, but switched to dinner.  Thinking I might switch back now though! 

 

Alex

[Trey]

What would it mean that some respond slowly to one drug but quickly to another?  That the theory of faster vs slower response is not the whole story.

[gerry]

Current theory at the moment is the immune system is able to manage the CML when you stop, so does this mean the immune system is helping the TKI get rid of the CML cells out of the blood and hence you are a fast responder, not sure.

[tiredblood]

My nilotinib has achieved its desired effect being taken every 12 hours.  I'm jealous of you once-a-dayers.

[garfonzo]

Hello All, you could describe me as a slow responder too. 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 things 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 Am/PM

10/23/2013  2.442  Tasigna 600 Am/PM

1/24/2014    2.497  Tasigna 600 Am/PM

3/5/2014      2.158  Tasigna 600 Am/PM

6/4/2015      1.319  Tasigna 800 Am/PM

9/3/2014      0.982  Tasigna 800 Am/PM

12/8/2014    0.845  Tasigna 800 Am/PM

3/16/2014    1.984  Tasigna 800 Am/PM

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