Hi everybody, i had a great (not good) surprise today. I went to my doctors office and got my 5 months pcr (it was done in a different laboratorie) and it was 0.5% IS. What happened is: i had my 6 months (made by my insurance) results prior to the 5 months (by the health system) and it was 6.83% IS. My first pcr was 14.41%. There are 2 options: an error or i'm losing my response very quickly. anyone in this situation?
thanks in advance
Hi Lucas,
I am not clear on your results.... is your latest PCR 0.5%? or is that the 5 month one (done by the different - private?- lab) and so the 6 month one was done by the health insurance chosen lab which showed 6.83%.
This is why you fear that you are losing response?
Please set out all your PCR results so that we can see if there is a trend.
It could be that the previous 5m result is a mistake or the 6 m one is a mistake- rather than you losing response within one month.
PCR methodologies vary considerably between labs- this is why your doctor should try to send your samples to the best available lab with the most sensitive methodology/machine.... and stick with that one rather than chop and change between results.
I cannot stress enough that one result does not tell you or your doctor what you need to know- especially if you have changed labs.
Several factors can affect a result.
Four key variables necessary for optimal q-PCR testing:
1. The sensitivity of the method used and requirement of a high level of technical expertise
2. The correct method of sample collection – in transit cells start to die and mRNA degrades
3. The quality of the blood or marrow sample: an adequate number (at least 10,000) of control gene transcripts should be present in any sample
4. Reliability- can the result be repeated?
BCR-ABL1 transcript levels are undoubtedly an important indicator of clinical response to TKI therapy.
When assessing results from q-PCR testing it is important to look at the trend from a consistent testing source rather than any one single test result.
Do not panic- there have been several patients (particularly in the USA where the choice of lab is down to the insurance company- so presumably cost and prices charged for the test is at play here.
You need a consistent source of testing if you are to make an informed choice about your TKI therapy.
Sandy
Hi sandy, this is the trend:
3 months - 14.41% (private lab)
5 months (a little less than 5 actually) - 0.56% (public lab)
6 months (30 days after five months) - 6.83% (private lab - same as the first. i got this result before than the 5 months)
It seems like the 5 months was a mistake. it's totally out of the curve. i'm a little anxious because i'm maybe these results are right - i think they aren't, but who know? - and maybe i'm losing response very quickly.
Thanks in advance
Hi Lucas... all I can suggest is - if possible- you ask the private lab to run another test, given that 2 of your results were generated by that lab.
I cannot see that you are losing response if you think the public lab result at 5 m was a mistake and you discount it.
3 m at 14.41%
6 m at 6.83%
still shows a downward molecular response... although it would be better to have seen CCyR at 6 m ?
Maybe you should now consider a change of TKI to a more potent 2G one? Would that be possible?
Sandy
Hi sandy. thanks for your answer
I'm going to one of the biggest cancer centers in brazil in 15 days have an appointment with one of the best doctors in leukemia. i'll do some mutational analyses and maybe chance to another tki. My hometown doctors said that their guidelines are to wait 'till 9 months and offer the 2nd generation tki if the patient wants. if he doesn't want then the wait till 18 months.
I really think that the second pcr was an error not because it was done at the public system, but because it was done in an unusual lab, not the one they run the tests here. I was a little scary because i had some immature wbc in my CBC (just 1% above the normal range and it was those who show up when you have some infection and i had contact with some sick people), my doctors weren't concerned about it, but i'll have another cbc by myself next week.
Thanks again, sandy!
Hi Lucas,
when you say you had immature cells show up in your cbc, do you mean blast cells? ..... and what do you mean by 1% above normal range. When you have had an infection it is normal for white cell count to increase... but with normal lymphocytes- neutrophils etc. as they are the cells that fight infections.
I think it is a good idea for you to have another cbc just to check all white cells are normal and not immature (blast) cells.
Good also that you are due to see a doctor at a specialist centre. Guidelines of your hometown doctor are not really in line with the 2013 updated ELNet recommendations or NCCN guidelines which recommend a change to TKI within 12m rather than 18m.
See here:
European LeukemiaNet recommendations for the management of chronic myeloid leukemia:2013
http://bloodjournal.hematologylibrary.org/content/122/6/872.full
NCCN Guidelines for CML patients: Version 1:2014: http://www.nccn.org/patients/guidelines/cml/index.html#1
Sandy
Hi sandy, it wasn't blast, so relax. it's a kind of immature neutrophil, a band neutrophil. no blast, no metamyelocyte, etc. I'll have another cbc on monday. :)
