6 replies to this topic

[rcase13]

I was diagnosed in October of 2014.

10/01/2014 100% Diagnosis
01/02/2015 0.06% Tasigna
04/08/2015 0.01% Tasigna
07/01/2015 0.01% Tasigna
10/06/2015 0.02% Tasigna

Little worried that I hit the 0.06% really fast but then stalled out and now increasing a little. Should I be concerned?

The 0.01% results could be less than 0.01% but my testing center won't report on anything less than 0.01% unless it is undetected.

Is there any chance of me getting to undetected on Tasigna? Or will I have to be happy with where I am? Am I growing resistant to Tasigna?

Tired of being scared all the time.

[Frogiegirl]

Rcase have you been on 600 the whole time? I get your anxiety completely. ......some days I don't know if I should be going through my things so my family doesn't have to..should this thing go south. ...but I guess we're no different then the normal healthy person in that they never know either. I think your response looks good. Remember the platue trey talks about that is most common with tasigna at around 12 to 18 months but can vary.

[kat73]

Your experience so far is completely similar to many, many CMLrs'.  Statistically, the difference between .01 and .02 is insignificant.  This doesn't look like a trend in the making to me.  The jump would have to be a half or whole log to be worrisome at all.  My lab DID report below .01 and I would see lots of bouncing around with a couple of zeros to the right of the decimal point buoying me up, and then being disappointed the next time back to "only" .04 or .08 or .02.  It's all good.  It took me six years to get my first PCRU, and I wondered many times if it would ever happen to me.  Way back in 2009 the thinking was that only a very small proportion of people ever got to CMR, but then so many new people began to show dramatically deep and whizbang early responses, and there started to be what seemed like a lot of people getting undetectable PCRs.  I began to be discouraged.  I figured if it was meant to happen in my case, it would already have happened a long time ago. So, over the years, I gradually lost the fear and got used to feeling comfortable with the relative safety of MMR.  And as long as I kept that one zero - even better than MMR - I was good.  Two zeros, icing on the cake.  Give yourself time to get there, both literally and metaphorically.  It's early days for you, and you're doing great. 

[scuba]

You have made outstanding progress! Your results are in the noise of the test at this point.

 

The fact that you fell to one log below major molecular remission after 3 months indicates outstanding response of your CML to Tasigna. You have reached a plateau (low level residual) that will likely continue to fade over time. 

[Trey]

Classic Tasigna plateau, except your initial slope was steeper than usual.  This almost always ends with a resumption of downward PCR after a few PCR cycles.  There is very little chance that anything sinister is going on. 

[IGotCML]

I had a similar leveling off on Tasigna. I got .124% after 6 months and then got MMR (< .1%) 6 months later. I stayed at MMR for a little over a year until I get PCRU earlier this year.

[Pin]

These results are so good, but it might take you some time to realise that

I had a plateau/increase/noise after about a year. It stressed me out no end, I was convinced I was losing my response- I wasn't. It seems to happen very frequently, Trey has some good theories about why this might happen. I think the gist is that all the stupid cells get killed off real quick, and then the ones left might be a bit tougher so they take a bit longer to get the numbers down. Or at least that is my understanding!!

Anyway, with the supreme luxury of hindsight (that seemingly can only be gained by going through it!), I can tell you, you are in a very good position right now.

All the best to you!

Pin xxx