You are here

Where should I be after 18 months?

Hi, I'm hoping for a little bit of advice as I'm continuing to be confused about targets and where I should be after 18 months of standard Glivec treatment.My PCR results have gone as follows following my diagnosis in October 2010:

Nov-10 71.80% 1 month post dx
Jan-11 9.80% 3m
Mar-11 13.20%
May-11 3.78% 7m
Jun-11 1.09%
Sep-11 0.62%
Oct-11 0.48% 12m
Jan-12 0.18%
Apr-12 0.15% 18m

I was hoping to achieve the 0.1% MMR by now but am I right in thinking I've now missed this by over 6 months? Is there any reason why the rate of my PCR results have slowed, I'm doing nothing differently apart from a little less exercise following the birth of our first child. I can't help feeling disappointed with these latest results, should I be?

I'm also waiting for the results of the bone marrow test from a couple of weeks ago to test for disease activity, fingers crossed for a negative result!

Thanks for any advice you can give.
Neil

Neil,

I was diagnosed in Oct 10 (aged 32) too and have had interesting progress. I was diagnosed in the US and made excellent progress (according to those labs) and believed I was PCRU i.e. BCR-ABL undetectable. On returning to the UK my first PCR test result came back at 0.17%, less than two weeks after having a test telling me <0.000% - imagine my surprise - I'm currently waiting on the follow-up result. Effectively i now have a disjointed history as it seems i cannot compare apples with apples. However, it appears you and i are at exactly the same place, give or take fractions of a %.

As easy as it is to say this from the comfort of my kitchen, absolute numbers at this stage are not the be all and end all. You have an excellent downward trend - and it's trends that matter. If you plateau then you may wish to consider discussing dosage changes with your doc. Until that point keep doing what you're doing and may the numbers continue to decrease. You may find at your next test it's dropped even further - right now you're effectively focusing on the last 2-3 data points. If I could confirm a downward trend similar to yours I would be happy. Of course everyone wants to get to the magical 0, but as long as it's pointing down, it's all good in my opinion.

What has your doc said about progress?

Chris

Thanks Chris for the reply. That seems very strange to see your results at 0.000% in the USA but then to be 0.17% in the UK.

I was 31 when I was diagnosed so I'm more relaxed to know that you are likely to be at the same point as myself, I had a blip last year as you can see (which is unexplained) but since then things had been coming down quite quickly. I was expecting to be at 0.0something % yesterday so was a little bit disappointed with 0.15%.

As you say though, the most important thing is the downward trend and fingers crossed it continues. I also find it hard when looking at different pieces of information to keep up with the differences between CMR, MMR, CCyR, MMoiR, PCRu, etc... and the different points when they should be hit. The iPhone apps try to make it a little easier, but according to that, we should have hit MMR (PCR=0.1% in Oct'11), however, looking at the slides from the conference in Cardiff, an opitmal response for MMR is 18 months! Confusing! Either way though, we have a sub-optimal response which is worrying.

First- your pcr track looks pretty good to me and shows a consistent downward trend, apart from March result which shows a slight rise on the previous result. I would say that you should discount this particular result because it was a one off and the following 6 results continued downwards. The March result could have just been a blip, or the sample might have been contaminated etc... there are many things that can effect a result, and that is why you should only assess your response from at least 2, preferably 3 consecutive results.

I do agree that your results after September 2011 do show a slower rate of reduction...0.62; 0.48 then at the 15 and 18 months time line you have 0.18% and 0.15%- which is virtually the same result.

According to current guidelines at 12 to 18 months an optimal response is a 3 log reduction from diagnosis-
or expressed on the IS as 0.1%, by 12 - 18 months

My understanding of all this is, according to your last pcr result at 18 months - 0.15% - you are at the level of MMR.
So I would say that you are within optimal response times according to current ELNet guidelines and you certainly should not be disappointed with your progress on IM 400mg so far.

Given that the recent NICE guideline recommends nilotinib as second line therapy, you do have the option of changing therapy should you and your doctor consider that your results have hit a plateau.

Hopefully you can discuss this possibility at your next appointment and when you have another result, which as you say, hopefully will show you have an additional zero (4 log reduction)

Over the last decade it has been shown that a stable 3 log reduction (0.1%) is a very safe place to be.

Best.. Sandy

Hi Chris..

I bet you were surprised! All I can say is that this is a big problem for US patients. Labs there are not standardised with one another or use the IS.

The quest for international standardisation (IS) of labs performing PCR has proven to be quite difficult. Australia and most of Europe (inc UK) do work together and use the IS.
However, it seems that it is taking a very long time and there are moves to use a different method all together to measure bcr/abl % so they would be more consistent.
meanwhile... if your future results come from the same lab at least you know where you are- even if you are not, as you previously thought, at CMR (4.5 to 5 log reduction or 0.001%>)- at 0.17% you have a CCyR are no doubt on the way to MMR

Best wishes,
Sandy

Many thanks Sandy, no doubt there will be a discussion with my doc in a few months but hopefully there will be an additional 0 in there! I only saw the registrar last time and he was quite happy and said it was a very low reading, which i was a bit surprised at, but I guess I also have to remember that 18 months is still a very early stage!

Thank you!