You are here

18 months result

Just got my 18 months results and wanted to get an informed opinion on this latest number.

Although I reached MMR at 15 months my latest pcr came at 0,074 (up from 0,059 at 15 months).

I am still in the European Leukemia net safe zone but this 0,015 increase in 3 months was certainly not expected.

Any insights? I feel I am too close to the MMR line.

Thanks.

G

PS- I am on 400mg Imatinib daily

Nothing to worry about I don't think. Variablity in the test process at these low levels is larger than the difference between the two results. Many people have a plateau for a few months at this stage. Really don't worry and see what it is in another 3 months.

No statistical significance.  Within the noise of the test. You're doing great!

Thank you both.

I came across a chart from a medical study (2016) that tested the same sample 146 times and although the average was 0,11 % the values fluctuated from 0,05 % to 0,20%. Standard deviation was not 0,01% its was much higher, possibly closer to 0,05% ... same sample and same laboratory!

Having said that, my level of anxiety has risen from this. Could be something, could be nothing...

Interesting chart you mention regarding qPCR testing variation.  Would like to know what the relative standard deviation (%RSD) was for those 146 measurements. Testing the same sample multiple times is known as "intermediate precision" assuming different lots of reagents, different instrumentation, different analysts, tested on different days but all within the same laboratory.  However there are other potentially large sources of variation with true patient samples and that is around sample storage conditions, sample shipping, stabilizing agents used to prevent degradation of RNA, number of days from sample collection to sample testing etc.  Testing the same same sample multiple times using the same reagents, same analysts, on the same days with the same equipment is known as "repeatability precision" and represents the tightest level of precision.  "Reproducibility precision" is the largest level of variation as it incorporates testing the same sample in different laboratories with all possible sources of variation built into the test.

By the way your results are very similar to mine. I was 0.060% at 15 months and 0.082% at 18 months. And my 21 month result was 0.020%. As others have mentioned your values are well within the error of the test method.  You are doing well with imatinib.

Hi everyone,

Apologies in coming back to this topic, given the rise in bcr abl my doc ordered me to urgently (today) do a blood test and a new quantification of bcr-abl combined with a new mutational study.

I had done a mutational study in the past and it identified an insertion (not a mutation) of 35bp. There are conflicting studies on the relevance of this insertion in forming resistance.

Doc was very cold and careful at the appointment in light of all of this. 

G

Hopefully your 18 month PCR result isn't a sign of a problem and your doctor is just being cautious.  My PCR scores have also wandered a bit through the years.

 

2012  118.683%, begin Gleevec 400mg/day,  003.590%

2013  000.914%,  000.434%,  000.412%,  000.360%

2014  000.174%, 000.088%, 000.064%

2015  000.049%, decreased to Gleevec 200mg/day, 000.035%, 000.061%, 000.028%

2016  000.041%, 000.039%, 000.025%

2017  000.029%, 000.039%, changed to generic imatinib 200mg/day, 000.070%, 000.088%

2018   000.233%, changed to alternating Sprycel or generic imatinib,  000.013%,  000.007%, 000.006%

2019   000.007%, 000.007%, 000.000%, 000.004%

You did not mention the 35 bp insertion before.  That does indeed call for more monitoring, as you have undoubtedly read amongst the studies a Google search will bring up.  Your doctor's attention and caution are laudable.  Hope for you it turns out to be not an impediment to DMR!  Keep us posted.

Need wisdom!
Just got my 19 months results … BCR-ABL and the 0,074% is now 0,078% (which at 32000 samples is ~1 cell).
The lab did not perform mutational analysis given that the numbers were below the <0,1%.
During these last months (because of some gastro issues) I was on a 40mg omeoprazole regime that was simultaneous with imatinib. I have since discontinued and have actually started to feel more intestinal issues since (similar to the ones I had recurrently with imatinib).
Also, I carefully studied all my blood samples and found that the one that generated the lowest BCR-ABL number had a time from collection to lab superior to 72h which apparently correlates to a lower BCR-ABL. The two recent ones are increasingly shorter in duration between collection and lab entry.

Regarding the 35bp insertion ... I did something most of us don't do ... I was tested for mutations at 3 months because of a lab error. Terrible experience but in the end positive ... The implications of the 35bp insertion are somewhat unclear and the persistence of it also (it has a tendency to appear and disappear), Most recent studies indicate that the BCR-ABL35 is function dead... i.e. it does not proliferate. But then again I don't even now if I still have it... its been more than a year and a half since it showed up and my BCR-ABL was 2,2% at that time. I was able to reach MMR more or less on time despite of it ... which makes us wonder how many of us have CML, never done mutation testing and might have ins35.

My mindset – I am not looking for TFR or CMR … I will settle for survival. That’s my goal ! For the sake of my children and my wife.