3 replies to this topic

[CallMeLucky]

So I got results of my follow up PCR and the numbers edged a little higher.  I was negative for last year or so went to 50mg of Sprycel and after a few months I went detectable again.  Was .036% last month non-IS with a rough equivalent somewhere around 4 log reduction.  Now at .046% and rough equivalent of 3-4 log reduction.  So it looks like numbers are creeping up slowly.  Going to do another PCR at another lab that is IS to make sure not making a rash decision on perhaps a bad last result.  As mentioned in previous post, these last two results are from a different lab.  Frustrating that 50mg Sprycel is not enough to maintain PCRu after a year of being PCRu.  If next test confirms no longer 4+ log reduction then I have to decide what to do.  Increase dosage and try to deal with side effects, Switch to Tasigna or Bosutinib.  I think Dr is leaning towards Bosutinib, but I'm just not sure what the best decision is here.

One thing I think I have to accept is that cessation is not something that is likely in ,my future.

[LivingWellWithCML]

What else are you taking with the Sprycel?  Still on the 2g/daily Circumin regimen?

Sorry about the detectable results -- I know how you feel.  It's frustrating and I wish we could have more control over our treatment response.  I try to do the undetectable 'rain dance' before each PCR test, but it's not working!

[CallMeLucky]

I am taking the Curcumin and Advil.  Considering stopping for a bit.  The reality is that they switched labs so it is hard to know what is going on which adds to the frustration because it adds indecision.  If this was the other lab and the second result was like this, we would say ok it looks like it is going up so 50mg obviously isn't doing it lets decide what to do next.  But now I have variability that makes it hard to make a decision.  I am going for blood draw on Monday morning and they are going to send to another lab that is IS.  My doctor's position is that I need to be at 4+log.  My last result said they think I'm somewhere around a 4 log reduction and this time they said somewhere between 3 and 4 log reduction.  My doctor said he's not going to base decisions on results like that, so we are going to send to another lab that is IS and know for certain.  Ultimately I am guessing that I am going to have to change treatment in some way, even if this lab is not IS, it showed that from one month to the next there was an increase in BCR-ABL/ABL, so unless I take the position that this lab is completely wrong, then it would appear things are not holding the way they should.  The question is what to do.

[Trey]

If the side effects are the most important consideration requiring lower dosage, a switch to Tasigna or Bosutinib may be worth trying.  There are no guarantees about side effects for any specific person since we are all different.  But trial and error is not a bad way to go.  You have plenty of room to take them for a test drive [your mileage may vary].