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6 monthly PCR tests from now on - and a good solid MMR

At clinic yesterday, saw Prof Craddock @ QE Birmingham, moving away from clinic to transplant mainly, shame lovely guy, liked seeing him. However a leading light with transplantation so look forward to some excellent work, although mostly none CML now. He was saying Birmingham is now doing only 5 to 10 CML transplants a year out of 150 to 200 from there. Just shows how good TKI's are for most.

Couple of things, last time I went I was told and posted here I was changing to 6 monthly PCR's Prof confirmed that this is likely to happen generally in the UK once people hit and maintain MMR so be aware likely to be the case for many. Clinic still 3 monthly for " normal " blood check.

For the first time had a print out of my history from DX, up from 0.087 to 0.105 this time ( a slight rise is not an issue I know as basically this means no change and a steady solid result) so still round 0.1% MMR so very pleased, but doesn't want to move down yet, will do though I know in time ( Imatinib ) and ive got another 30+ years yet !

Interesting my 3 months was 34% I was told at the time, so not the 10% always talked about, always questioned this, as is it my PCR or marrow, the answer was no, the print out shows PCR was 23% so still higher than the magic 10%. But made MMR at 18 months. Mention this for those that aren't 10% 3 months, worth checking was your figure PCR or Marrow as my 34% was, as you may be worrying about a figure that is higher than it really is. At 6 months PCR was 14.8%, still not this 10% then but got to CCyR at 12 months from marrow and MMr at 18. So slower than 2nd gen TKI's but little side effects for me thankfully. So for those new or on going don't get to hung up on the 10% is what I would say, it takes a few years to realise this. All the best, keep well all. Nigel

Hi Nigel,
You overview of your experience with imatinib will be helpful for many to read about. I would add just one thing to clarify percentages etc- at diagnosis a PCR test is generally only used to confirm (or deny) the presence of cells with the BCR-ABL gene rather than the total amount of Ph+ cells..... so at diagnosis and early stages of therapy it is a qualitative rather than a quantitative test.
This is because it not a very accurate test at diagnosis and first months of therapy which is when there are higher levels of disease present.

That is why in early stages of treatment cytogenetics/FISH tests are used to assess response to therapy with qualitative PCR (qRT-PCR) only really coming into its own when therapy reduces the level of Ph+ cells (containing the BCR-ABL fusion gene) are reduced to much lower levels at least much lower than 35%.
Below 10% PH+ivity qRT-PCR is much more accurate and highly accurate below 1.5%(roughly CCyR). At these lower levels, Ph+ cells are more difficult to detect by cytogenetics/FISH testing so monitoring with qRT-PCR becomes the norm.

Once there is a stable molecular response like yours (0.1%/MMR), most centres will switch to 6 month monitoring with PCR and as you say, just testing cell counts in between.

Personally, I am tested at 4 months intervals at the moment. This is because when Hammersmith changed to a more sensitive PCR (at least a 5 log (0.001%) detection) my results showed there was still a residue of BCR-ABL present. However, over the last 18 months or so there has been no sign of increase in percentages so I am relaxed about it.

I am sure I too will eventually get to 6 month testing again.

Sorry you will have to get used to another doctor at your clinic - but the main thing is that you are monitored at an expert centre, and of course that you have stable disease and a good quality of life.

Best wishes,
Sandy

Many thanks as always. Nigel

I'm possibly in a minority position in so far as I had a matched unrelated transplant a long time ago.... 17th May 1996, so just coming up to 18 years ago and after a couple of years of being seriously ill with a range of particularly bad stuff when I was immunosurpressed, started to do well and returned to better health and a more normal life.

My treatment is at a specialist centre in Leeds. My transplant was done by Dr Barnard (now retired). He was a man with a brain the size of a small planet and charm and a bedside manner to match it. He retired some time ago and just after the Leeds BMT unit had it's 25th anniversary of being opened and like Nigel I also had an uncertainty about "what next". I also used to see Dr Graeme Smith at Leeds though and he was my continuity and I also liked him.

Then I took part in trials for new testing that happened along that was better in terms of detecting diagnostic markers and whoa.... things weren't as good as everyone thought they were!

Fortunately this coincided with Glivec on trial so I went on that 13/14 years ago and there's been no looking back.

I believe a lot of folks reading this will know of Dr Smith and the work he does at Leeds and I have absolute utmost confidence in him.

I am still monitored with ongoing pcr blood tests 3 monthly.

Hi all, Like to keep all posted with progress for those on Imatinib as it can be a journey and slower acting than 2nd Gen TKI's, and perhaps early days.

Started at 95% PH+ on Dx. fell to 24% PCR at 3 months, so not the gold standard 10%, achieved CCyR at 12 months. Had a couple of little blips / bounces on PCR's along the way, and thought and discussed a change but Imatinib "suits me " I feel as I'm well.

The point is don't get to hung up on a small blip they can and do happen, says me. So 3 monthly I was 0.1 then 0.9 then 0.1 and yesterday 0.07%. Really pleased. Onwards and downwards. Thanks all, great job Sandy.

Nigel

Hi Nigel, thanks for your post. I think it will reassure a lot of people.

0.07% is a great result! many congratulations on achieving that and you must be really pleased that your 'instincts' to stay on the TKI that suited you has so obviously paid off.

Best wishes,
Sandy