Just got the results for my 12 month bcr-abl and it came 0,15% vs. <=0,10% per ELN guidelines for 12 months.
I am on Imatinib 400mg daily. Values are dropping, 2,2% at 3 months and 0,4% at 6 months.
Should I be worried?
Simple answer from me is no you should not be worried. The trend is still downwards. The difference between your result and the guideline is within the repeatability of the test process. The guideline didn't exist when I was at the stage you are now, which is 11 years ago. I was (from memory) 0.18%, and on a similar trajectory to you.
What the guideline says if you have not achieved 0.1% the consultant should consider whether a change in dose or TKI is appropriate. I expect that consideration would be very short and come up with a view that it is not appropriate to change anything.
For info I am now 6 months into trying treatment free remission - all good so far.
Had my appointment with my doctor today.
She was much more concerned with the 0,05% failure to reach the <=0,1% than I anticipated.
I was unable to find additional information on this topic.
Overall Imatinib seems to take longer than Sprycel to possibly reach MMR.
Is it normal for people to plateau at certain levels? I realize that I still don't have sufficient data points to reach that conclusion.
It would be ideal to have reached 0.1% by 12 months but it is not an automatic failure. I believe it is considered a failure on that TKI if you do not hit that number at 18 months.
Take a look at page 29 of this document (specifically top right of page, 2nd bullet point). ELN and NCCN differ somewhat but I think it is safe to say that you are not in any danger. If you do not hit it at 18 months or the numbers rise then you should probably be discussing a different TKI.
0.15% is bloody close to 0.1% and I am surprised as well that your doctor was concerned. You are barely, and I mean barely into the "warning" category by ELN numbers. Run the PCR test again and you might see MMR.
Yes, imatinib can take a bit longer than newer TKIs to reach MMR but there doesn't appear to be any benefit to achieving it particularly quickly. The data doesn't show that reaching MMR super fast leads to better long term outcomes.
What was your PCR result, prior to the 0.15% one and when was it taken? (which I presume are all International Standard)
The 2,2% was at 4 months (I had an issue with my 3 month bcr abl).
The 0,4% at almost 6 months.
the 0,15% was at 11 months and a couple of weeks to be absolutely precise.
Between the 6 months and this result only 5 months passed.
What did your doctor say they wanted to do about the result, if anything?
The answer to one of your questions is yes, many people have a plateau - I know I did.
Is your doctor a CML specialist, who sees many patients with the condition, or a consultant haematologist who deals with many different blood conditions? If the latter they may not be able to keep up with the latest thinking on CML. Are you in UK, and if you're happy to, please tell us which hospital you are attending. If all goes well and according to the guidelines a general haematologist is fine. if there are any questions or concerns which aren't being addressed, several people on here have found it useful to be referred to a centre of excellence where there people who specialise in CML, or have 2 centre care where blood tests are taken at a local hospital but issues can be addressed by a centre of excellence.
I hope this is useful
She mentioned that changing to another tki would be a possibility if per guidelines targets were not met (albeit mentioning that the side effects associated with other tkis would be more aggressive). I guess she was unable to transmit some level of comfort with the situation (based on other experiences). She’s essentially running the eln playbook. I don’t think she’s a cml expert hematologist but more of a general hematologist.
Thank you for the input regarding cml centre but unfortunately I am not in the UK.
If I squint really hard, I can kind of see her point. 2.2% after 4 months is fab - you want to be under 10% at 3 months. So not to get to 0.1% at 12 months could be viewed as disappointing in that context (BTW, I would have been very happy with 0.15% at 12 months!!). But the trend is good, so if it were me I’d continue on until either things plateau at an unacceptable level, or more likely things just continue to go down slowly.
We are not robots, and we don’t all respond the same way at the same pace.
Alastair, Job and David,
You were all right.
I just received the 15-month bcr-abl and the value is 0,059%. So, with a 3 month delay I was able to reach the MMR holy grail!!
Just cancelled all my meetings and I'm off to the beach outside of Lisbon to eat some charcoal grilled sardines by the beach with a bottle of white wine!
Thank you all for the support and feedback.