See Home page for details of the updated (2013) recommendations for treatment goals in CML by the ELNet- which pretty much echo what we have been reading about from expert clinicians over the last year or so.
NCCN (US) have also updated their guidelines for clinicians, which are more or less the same as ELNet. However they have not as yet updated their patient info booklet. When that is available we will publish the link on this FAQ page.
Sandy
Hi Sandy, thank you very much for posting this, it makes very interesting reading. It confirms what we have all known already for several months, from our own research about the significance of the <10% at 3 months target etc. I am pleased they have now included this in the recommendations, although it is a bit late for myself as you know, I had to fight to get a treatment change when I did not reach these targets. Do you know if these are going to be the recommendations for the UK now as well as US? Also, it states that these goals apply to second line treatment too. Do you know how long you would have to be on a 2nd line treatment if you were still failing the goals before they then recommended changing to 3rd line and so on? I have now been on Nilotinib (after sub optimal response to Glivec) for 3 months and am wondering if they will leave me on it responding slowly, or maybe the guidelines will now recommend 3rd line in the future. Thanks for all the info , Julie
That is really interesting. I have never managed to hit any of these targets and have had suboptimal responses on four drugs so far but my consultant said recently that as my counts have never really gone mad (stable between 1.2 - 2.5 ish) that it is entirely possible that they will not get any worse and I may bob along like that for years. I think we set a lot of store, and rightly so, by these targets but there will always be people who don't quite fit the picture and that should not be cause for too much panic, so saying I still worry when the counts fluctuate!
K
Karen, I have another CML friend who I have known since 2005. She has never has an optimal response on either imatinib or dasatinib. When she changed to nilotinib she responded better but very slowly and her results were never much below 6% Bcr/Abl- until last year when they started to drop, again very slowly. Then a few months ago she reached MR at 0.1%.... it has taken her 11 years to get there ;o)
ELNet and NCCN are recommendations and Guidelines for optimal (ie. best possible) responses. But, while these recommendations are very useful for clinicians they are just that- recommendations and an individual and their clinician must put them into context and 'take a view' as they say. Just as in your case Karen. I feel the key point is to make sure you have a clinician who you can discuss your individual case with, and in order to do that you need to have the information/terms of reference - hence the importance of knowing the guidelines/recommendations.
As you say... not everyone 'fits' the picture.
Best Sandy
Hi Julie,
ELNet- the European Leukaemia Network - include clinicians from the UK. So to answer your question, yes these recommendations will also be those of CML expert clinicians working in the UK.- after all it was Dr. Marin et al of Hammersmith who published the paper which outlined the less than 10% Ph+ at 3 months as a requirement for optimal responses, for the majority. As Karen says quite rightly in her post below- not everyone fits the picture.
In any case, you need to assess whether you have 'responsive' disease rather than whether you are strictly hitting the goals within the timelines.
How are you doing on nilotinib?
Best, Sandy
Hi Sandy, thanks for asking. I am doing much better on Nilotinib, the 1st BCR test after I changed to Nilotinib showed a big drop, but the one after was only 1.5% drop. I am still around 7.5% PCR at 14 months. I have just had another BMB and PCR and get results in a few weeks. Hoping for a zero . I have been on Nilotinib just over 3 months now. It's reassuring to hear about your friend that did not get a zero for several years, I have always thought it was essential by 18 months.
