Hi All,
I am 30 Yrs Old and i have CML and have been taking imatinib for 8 months. Went thru the period of weakness and all hardships. Now i am quite healthy like a normal person. Is there any one who have completed the treatment and have stopped taking the drug. As per my doctor, it seems we need to continue through out our life time.
Regards
Refaye
Hi Refaye,
For the majority, yes as things stand at the moment your doctor is right. Imatinib (and other TKIs) needs to be taken regularly as prescribed and for the long term. When you say you are healthy 'like a normal person' I am afraid it is highly unlikely that there are no longer any Ph+ cells left in your marrow. Even those who have a major molecular response to TKi therapy still have what is termed 'residual disease' which molecular testing i.e Q-RT-PCR, will detect.
This is why PCR results are so important.
However, there are a minority of patients who when treated with imatinib can show a low and sustained molecular response (lower that a 3 or 4 log reduction in bcr/abl or >0.003...% 0.0003...% by PCR sustained for at least 2 years) who have enrolled in the STIM study (or the equivalent Australian Study). These studies closely monitor by frequent PCR tests the individuals residual disease when imatinib is stopped. If over time (usually 6-8 months) there is no increase in bcr/abl % then it might be possible to stay off therapy for some time-
For some individuals this might translate as- a few years/5 years/or even the longer term! No one is able to say just yet- but in some indviduals it seems that TKI therapy 'might' produce a technical 'cure'.
Basil, who is a member of this forum, has managed to maintain very low levels of bcr/abl for just about 3 years. See the link to this discussion thread in Jeff's post below.
The STIM trial seems to show that around 40% of those who have sustained MMR or CMR are able to stop therapy without relapse. The other 60% of the trial group will see a rise in bcr/abl % within 6-8months and will need to restart TKI therapy.
It seems that all those who need to restart do regain their response to imatinib.
So I suppose the message is- you need to maintain your therapy for the long term. If you do have a major molecular response with PCR results of less than 0.003% bcr/abl you need to maintain those or lower figures for quite a while - at least 2years- before you consider enrolling in a clinical study line the STIM trial.
I hope this is not too negative- there is a good chance that some of those who respond over the long term (years not months) will be able to try to stop. As time goes on we will see more effective therapy- and who knows- one of the newer TKIs might well act as a 'cure' for some or even a majority.
Best wishes,
Sandy
