Long Progression-Free Survivors on Tarceva

Tarceva has been shown to extend the progression-free survival time and improve the quality of life of many advanced lung cancer patients, especially for those who with positive EGFR. However, the information regarding its long-term survival benefit is still very limited. I have posted threads to seek this information, for example at http://www.inspire.com/groups/lung-cancer-survivors/discussion/ned-on-tarceva-1/ and http://cancergrace.org/forums/index.php/topic,8426.msg94341.html#msg94341. Although there were not many responses, those responded did expand my scope, and I appreciate them. Let me summarize what I have learned so far.
Most reports from clinical trials on TKI (tarceva or irresa) have focused on progression free survival probability (PFS). The median time of PFS (the time half of the patients have progressed) for positive EGFR on TKI ranged from 9 to 15 months. Some reports did include the overall survival probability (OS). However, OS is not a real measure of the long-term benefit, because patients did receive other treatments after progression. In my opinion, a more meaningful long survival time is how long a person can stay free from progression. Most trials were cut off once meaningful PFS data were obtained. The only useful information one can get for this purpose is the percentage of patients who were still progression free at the cut-off time. For example, the CALGB 30406 study showed that about 20% of the positive EGFR patients remained progression free at the 42th month, while the NEJ002 study showed that 10% the Iressa arm were FPS at 27th month. The above information indicated that a patient free from progression for 2 years (twice the median) is a long progression-free survivor (LPFS). Unfortunately, previous trials have not reported the follow-ups of those who survived after the trials, so information is lacking regarding the fate of those LPFS.
In an effort to gain more information about LPFS, I have collected information from the web sites and from friends. Since tarceva was only approved as a second-line therapy in 2005 and as a first line in 2011, there are not many LPFS cases on tarceva as the first-line treatment. I have focused on advanced lc patients who claimed tarceva as an important contributor to their LPFS. In the following examples I will use NED to describe the cases of ‘no evidence of disease’, or ‘free of cancer’, or ‘full remission’, because they all mean the same thing to me. Below is a summary of my finding:
I have information about six (6) individuals who have LPFS exceeding 5 years up to now, four (4) of them have claimed NED.
In addition, indirect sources have added 10 to 12 cases with LPFS for more than 5 years. However, their current status is not clear.
I also have information about fifteen LPFS who have been in treatment for less than 5 years. Four (4) of them are in NED.
In addition to the above, unfortunately five (5) individuals have progressed after passing the two-year mark.
It is also good to know that three (3) individuals have gained NED on tarceva in less than two years.
These examples do not have statistical implication, because I do not know the total samples. They are intended to give encouragement to tarceva users. I hope that the CSN will expand the scope in this post.