10 replies to this topic

[mdszj]

Hi all

 

I was dx w/ CML in July 2012, and have been PCRU since Oct 2013 (3 different PCR results of 0.000% IS as done by Quest Lab), until earlier this week.  My PCR from my blood draw at Quest this past Monday came back at 0.043%.  I take 100 mg Sprycel.

 

My hemo called me Thursday about this result and said to get a retest next month, to determine if it is a lab error or if it is really increased.  He said if it is increased that I will have a mutation test performed.  (I think - I was in shock hearing all this but I think the above is pretty accurate).  He also mentioned about a bone marrow biopsy as well.

 

Was hoping someone could answer this question - is it possible or common to have a messed up PCR lab result?  ALso - Is it possible that the cml could increase 1-2 orders of magnitude in a little over 3 months?  My last PCR that was 0.000 was June 30, 2014.  That seems like a very rapid increase.

 

thx for any thoughts on this...

[Trey]

The re-test is the right approach.  You are still well below MMR so not worrisome at this point.  It could be an error.  These tests are not nearly as accurate as the .00X might imply.

 

From barely PCRU to your current level may only be about 1 log.  So not as much of a jump as you might think.

 

Also, a kinase mutation test is only accurate well above MMR, probably close to CCyR (roughly a 1% PCR).  So it would probably not be useful at your current levels. 

[mdszj]

thanks Trey hopefully it is just noise variation in the lab result.  I guess if it goes up more, than that might show a trend.

[rcase13]

Good luck!, as a newbie I am envious of your numbers. I hope I have the same results. Make sure to post back with updates so us newbies can follow along.

Did he mention a biopsy for a more accurate test? Just wondering why the onc mentioned that.

[mdszj]

hi rcase, thx for the well wishes - I saw your recent post - I am sure you will do fine as time goes on, just let the pill do the heavy lifting.  Although if I had any advice for a new cml patient it would be: try to exercise every day consistently, even if it is just taking a walk.  ALso drink plenty of fluids, it seems to help me get rid of my morning headache.  I figure it helps flush out TKI breakdown products that build up overnight, inflammation chemicals, etc (or maybe not - who the heck knows??)

 

AS far as the BMB, I believe he mentioned that they could tell from the cytogenetics info, what the real scoop is (not totally sure about this tho).

[Trey]

BMB at MMR levels is a waste of time.  Won't see anything.

[PhilB]

Over the years we've had quite a few people suddenly blip up then drift back down again for reasons unknown so try not to panic.  My personal theory is that it may be a quiescent CML stem cell that had been lying doggo and thus unaffected by the drugs.  It wakes up, comes out to fight and gets machine gunned down by the TKIs.

 

Definitely agree with Trey that a BMB doesn't really make sense at those levels as the odds of them even finding a Ph+ cell are so low.

[mdszj]

Trey and Phil - that is good to hear, now all I have to do is convince the hemo not to do the BMB (unless things go south).

[LivingWellWithCML]

I quickly got to PCRU in the first 12 months of Gleevec 400mg, but then I started showing a blip in year two and my PCR became positive again and rose as high as 0.125% IS.  My hematologist had me stay the course, and I started dropping again and got back into PCRU in year 3 of treatment.  No BMB, no mutation testing, no dosage changes, etc. - he just had me chill and take the pill.  I'm not very good about the chill part , so it was good to see it start dropping again.  I wouldn't recommend doing anything different unless the patient shows a trending upward PCR that goes above 1.0% IS (which would be a loss of cytogenetic response).  Good luck!

[mdszj]

Thx Dan hopefully it will go down again when I do the retest next month.

[mdszj]

All

 

Just wanted to report back on my retest after having gotten PCR of 0.043 last month, I just got the results in the mail today.  I had my blood draw at Quest on 11/13.  The PCR came back at 0.005% IS.  So it is back down again but still not PCRU. 

 

Since I got the 0.043% PCR number over a month ago I have been taking a lot of vitamin C, having a lot of salads with olive oil and white vinegar, and eating soups with added vinegar and Crystal hot sauce (sort of like some bastardized version of hot and sour soup but not nearly as good).  The goal was to go acid to dissolve as much sprycel as I could.  I am going to stick with this diet for a while and see if I can get back to PCRU next time.