Is Adjuvant Gleevec For You?
by Kathy Flom, spouse of a GIST patient
Whether to take Gleevec after surgery is a very difficult decision we hear presented to many GISTers. GIST cancer cells are mutated in a way which causes them to ‘switch on’ and multiply out of control. Resection of GIST may remove all of the cancer cells or some may be left behind, momentarily undetected but causing a recurrence down the road. It is possible to be NED (No Evidence of Disease) and or GIST never to return. However, it's my understanding that the rate of return may be as high as 50 to 85% for higher-risk tumors. Whether it's shortly after surgery or 15 years down the road is hard to predict. Unfortunately, the only thing that is predictable about GIST is that it’s unpredictable. At the current time we do NOT know WHO it will return on, IF it will return, or WHEN it will return. The chances for recurrence are higher if your tumor was larger than 10cm, or if it ruptured before or during surgery, or if it has a high mitotic rate that causes rapid cell division and tumor growth. GISTs with mitotic rates that are less than 5 / 50 HPF are regarded as having a more favorable prognosis than those with higher rates of cell division.
Certain risks create a greater chance of return, but there are GISTers whose disease returned even though they fell in the low risk group, and we also have members who had high risk factors and years later still have not had a recurrence. So making a decision whether to take gleevec or not for adjuvant purposes is a very tough decision.
With current knowledge, it seems no matter which way we guide a person, we could guide them in the wrong direction, as each individual seems to be so different. Would taking gleevec as a preventative wipe out any remaining residue and prevent GIST from coming back? Or would patients be using up their magic pills which may cause them to be gleevec-resistant at a later date when they may need them more?
Some GISTers may decide they wish to take Gleevec only to find out their insurance will not cover it for preventative purposes and the only way to possibly obtain the drug is through a trial with a 50/50 chance of receiving either gleevec or a placebo. GISTers who fall in the higher-risk category may have better luck with their insurance covering gleevec than those that fall in the lower-risk categories.
Also, most insurance companies will cover Gleevec after a recurrence, even if all the visible GIST was surgically removed the second time around.
Another factor to consider is the mutational status of your c-kit gene or PDGF receptor alpha gene. Some mutations respond better to gleevec than other mutations or wild type genes. If you have a mutation that does not respond well to gleevec, then that may play an important factor in your decision.
GISTers are often faced with very difficult decisions (although this is one my spouse Herb never had to ponder as his tumor has always been huge and inoperable). With what we have read through the years though, Herb feels if he could have had surgery and with the knowledge we currently have, that without a doubt he would have taken the gleevec and probably would have continued to stay on it indefinitely. But we know Herb would be in the high risk group, but if he were a tweener, we don't know. Its those dang tweeners that create very painstaking difficult decisions for many folks. To go on Gleevec, or not to go on it, then if you do, when do you go off of it? So many brave pioneers are here among us, and through the sharing of their personal journeys we are better able to fit the pieces of the puzzle together so future GISTers can make better informed decisions.