I'm beginning to wonder if these guidelines for optimal response are really useful for those newly diagnosed. People are getting really stressed about getting to this target as an indicator of their progress, and this stress itself is a problem. There are many of us who did not get to MMR in 12 months (18 months for me) but who have subsequently been PCRU or log4+ for years and years - and some of us are now involved in dose reduction. The "target" didn't exist when we were diagnosed so we didn't get stressed. It may be an indicator of optimum response - but it does NOT mean that if you don't get there you need inevitably to change TKI/increase dose/look at SCT. The key thing here is to maintain a long term downward trend - who hasn't had an upward blip in BCR/ABL at some point? All the patient can do to ensure they take the meds consistently; most of the rest is not in the patient's control. Thoughts anyone?
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ELNet recommendations and NCCN guidelines - MMR in 12 months?
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The thing is, these guidelines were made for clinicians not patients. But of course patients read them too, and in these modern times with such access to information it’s impossible not to look against them.
Clinical guidelines have to have cut-offs, really. It’s hard to embed a judgement factor in them. But that’s what docs will do. If someone is on a downwards trend and in a “warning” the doctor will stay the course. That’s the sensible thing to do.
I think the guidelines are fine as they are, and while we cannot stop patients reading them we as a patient group can help other patients to interpret them.
David.
Hi Alastair
I agree with you 100%. The guidelines were an IMMENSE source of anxiety and worry for me, because I was already very sick when diagnosed and borderline accelerated phase, with a huge spleen. Every single appointment stressed me out to the extent that I could not function for about a week before each visit to the haematologist. I didn't get anywhere near MMR by 12 months, nor even by 18 months! But it's now 30 months since diagnosis and I'm at 0.05%, doing well and, according to the doctor, not at significant risk of progression.
There are articles online about what doctors actually do with patients who are in CCyR but not MMR, and the consensus seems to be that CCyR is an extremely good place to be, and the conclusion is that there is no need to panic about such patients because MMR doesn't confer a significant survival benefit to patients in stable CCyR. I really think that we as patients place way too much importance on these milestones and get tremendously upset when we don't reach them, especially when so many other people on the groups seem to race towards sustained and deep molecular responses.
I think the take-away is that we must remember that we are all different and that there are loads of patients who do very well at CCyR when their CML is well controlled!
Best wishes
Martin