You are here

PCR results on IS or not on IS

Hi Everyone

My haem has just phoned me regarding my latest PCR results from blood taken at my GP's 2 weeks ago. I went down onto 300mgs imatinib one year ago after being at MR4 for one year before that. My levels have been gradually rising since then losing MR4( or so I thought according to our hospital raw results). I was expecting him to say that I had now lost MMR and should return to full dose (as happened when he called me when I failed DESTINY on half dose) but the opposite. The lab has now started giving IS results and it appears I have never lost MR4 as the local hospital's results had indicated, had held MR4 since Oct 2016  and my latest result is 0.0055% . I am delighted as I was completely resigned to having to return to full dose Other patients asked me why I didn't go back on full dose with the rises from 0.001% - 0.011% and I answered that I was waiting to see when or if my results plateaued. I am so pleased I held my nerve!! Here comes a glass of wine!

A year or two ago I had had a talk with the head of our hospital genetics lab about why they weren't using IS and she replied that as everyone starts at a different level of PCR ( mine was 43% 9 years ago on dx) she felt it was a more accurate picture of the individual patient's CML progress than the assumption of IS that everyone was dx at 100%. I am now pleased to see she has moved onto IS - as my results look much steadier.

I would appreciate comments by those of you on here who understand the IS vs non IS debate better then me as I wonder why she has decided to make the change. I will ask her when I next see her. My haem and the head of our genetics lab  give yearly talks to the genetics BSc and MSc students on using genetics for dx, treatment and prognosis- and they have included me for the past 2 years as a real patient so I can tell my "story" and emphasise how essential it is to us patients that results are accurate and delivered on time and the emotional rollercoaster so many of us go through while waiting.

Feeling elated and will ask to move down to 200mgs at my next phone appt in October with a view to TFR.

Best to everyone

Chrissie

Chrissie,

There’s been a recent effort from the labs in the UK to get not he International Standard. I’m seem at Barts, and they got themselves on IS about a year ago. It’s not a trivial task ... they need to do lots of testing to come up with a conversion factor to ensure that results can be reasonably compared across labs. Labs didn’t report IS before because the couldn’t! Where a labs local PCR figure is more granular / sensitive than IS you will generally see both figures on the report. 

So for you, it’s a good thing that your numbers are now reported on IS.

David.

Chrissie - Thanks for being a human guinea pig for us all!  It's really good for the doctors to hear from real, live patients about what really matters to us (like accurate and understandable lab results we can count on).  Also, glad to see that the bank error was in your favor . . .

Hello Chrissie 

I was really interested in your post, especially as I seem to remember from when I originally posted last year following diagnosis in December 2016, that you are treated at the Royal Devon and Exeter Hospital - I hope I'm right?

My BCR-AML results have been slow to decrease - I'm still struggling to reach target. For information my results have been:

13 weeks - 24.3

29 weeks - 14.9 (decision made to change to 2nd line TKI - Nilotinib)

39 weeks -  4.28

42 weeks - 1.26

46 weeks -  0.81

52 weeks -  0.89

55 weeks - 0.41

62 weeks - 0.37

69 weeks - 0.18

73 weeks - 0.37

I am currently waiting for a result taken at 77 weeks. I feel really well and feel really fortunate to have such wonderful treatment - I attend clinic every 28 days and monitoring involves an ECG on each occasion as I also have atrial fibrillation. The 73 week result (13/06/2018) prompted a discussion re the possible need to change to Dasatinib. Another BCR-ABL test was taken on 11/07/18 - I am waiting for the result hopefully it may be available on Monday, but we want to delay the decision to make a change for 8 more weeks. I'm currently taking Nilotinib 400 mg BD 

Sorry Chrissie a lot of information, but my simple question is could the disappointment in my most recent result be due to the change in reporting to the International Scale.

I would welcome your thoughts.

Best wishes to all

Daphne

Hi Daphne

Sorry for the delay in replying - house full of visitors/family etc. Yes I am treated in Exeter. Sorry to hear that you are a late responder - some people tend to react more slowly I know from past postings on this forum.

I'm afraid I really can't answer your question about the lab's transfer to IS. All I can say is that my results look lower on IS than on the hospital's raw score. When you get your results always ask for Page 2 as this lists both the hospital raw score and the result on IS from diagnosis.

I don't actually have to go to the clinic any more as I have telephone consultations which suit me better. 

Good luck with the latest results,

Best

Chrissie