Bob (not his real name) was one of the patients in the original B2222 phase 2 trial for metastatic GIST patients, a trial that has been running since 2000.

For 10 years Gleevec (at 600 mg) had been controlling his GIST, but Bob was struggling with the day-to-day side-effects of Gleevec. Most troubling were the muscle cramps, especially in the arms, that made it difficult to function effectively. Aching in the bones was also a problem; dealing with the side-effects of Gleevec had become a daily battle. Despite being treated at one of the best GIST centers in the country and despite taking supplements, such as calcium, the side-effects continued.

Due to the long-term grind of taking Gleevec and the toxicity he experienced, Bob explained to the LRG that he got “lazy” regarding his dose and started to miss taking his dose more frequently, perhaps once per week.

But then Bob ruptured his Achilles tendon and had to have surgery. With the surgery came inactivity. The nausea that he had more or less successfully battled for 10 years by getting up and moving around after taking his Gleevec, got worse and became harder and harder to tolerate. It was the final straw according to Bob. What began as missing his dose once per week escalated into missing his dose at least three or four times a week. This was not necessarily a conscience decision to skip his dose, it just sort of happened. Perhaps Bob had been lulled into a sense of security, after all Gleevec had been controlling his disease for 10 years.

About six months after his Achilles surgery and after he started frequently not taking his Gleevec, Bob got unexpected news; his latest CT scan showed new tumors in his liver. Bob was removed from the trial as the Gleevec appeared to no longer be working.

Bob decided it was time to talk to his doctor and tell him how much Gleevec he had been missing.

When Bob was able to take his Gleevec, he took it as prescribed six 100 mg pills taken all at one time. With the help of his doctors, Bob now breaks the dose into two, taking 300 mg in the morning and 300 mg in the evening and this has tremendously reduced his nausea.

At this point, it’s too early to tell if Bob will again respond to Gleevec now that he is once more faithfully taking his Gleevec or if his GIST has become resistant. What is certain is that Bob is not the only patient that struggles with the side-effects of Gleevec. Long-term therapy requires determination, persistence, great side-effects management and the knowledge/belief that Gleevec is what stands between you and GIST.

The point of this story is not simply “Take your Gleevec”. There are very real challenges that patients face every day. Long-term therapy is a daunting challenge that should not be underestimated. Many of us have heard, “You’re lucky, you only have to take a pill every day.” As most patients know, the reality is different. Gleevec, Sutent and other drugs have side-effects and they can be significant. Taking these drugs every day “to eternity” can be extremely difficult, both from a physical and a psychological standpoint.

Unlike other chemotherapies, oral cancer drugs like Gleevec can often feel like a life sentence. In our next issue we will offer tips and insights into coping with the emotional and physical issues that come with long-term survivorship.