You should always believe that you still have a future, if only to avoid being depressed. And because, according to stories about the latter, you then not seem to be truly happy, we prefer to look forward.
But how good is it really in the treatment of GIST, because nowadays there is medication available?
That’s indeed true, and we are very happy with those medications. That help us to survive longer. But it’s absolutely no cure yet.
Think about it. Before Gleevec (imatinib) was available, GIST patients with metastases had a mean survival expectation, depending on the source, form about 1.5 to 2 years. And the expected duration of survival has with the devolpment of Glivec increased to about 60 months. That sounds positive, but thus we are still talking about a life expectation of approximately 5 years. Undoubtedly an important time gain, but it is an average. You clearly realize that, when you consider that about 40 percent of patients live 10 years or longer. Which also means that the remaining 60 percent may pass away within those 5 years. Or, in any case, has become resistant to this medicine.
A frightening idea, because we know especially the stories of other GIST patients who live longer than average. Of those who were not so lucky you hear less, other than sometimes the knowledge of an obituary.
Fortunately subsequently some new drugs, Sutent (sunitinib) and Stivarga (regorafenib) has been developed. Each of which can again extend your life, but to which you also can become resistant. I could not easily find real figures, but sometimes it happens after a year and in other cases it takes longer.
As an indication, I myself became resistant to Gleevec after 1.5 years. Stepped over on Sutent but after a year was forced to revert back to Gleevec, in order not to disturb the healing of my stomach wound. However, unexpectedly, Gleevec worked again and therefore I gained at this time already an extra future of at least an additional six months. And since we seize every opportunity in order to have a party, we still celebrate that.
So where we are today with this disease? We still have a high chance that we have to die. The moment will be longer postponed, but there is still no cure.
And that frustrates me enormously. Not only because I’m a patient, but sitting useless, idly on the side is not exactly my forte. I want, but this is I think the wish for each patient, do something yourself. And from there, the idea arose to acquire more awareness about GIST.
Achieve such an objective is within the possibilities. Or rather, our abilities, because you do that, of course, not alone. To achieve that the support and input of more GIST patients, family and friends is soon required. Together we can raise more awareness about GIST. So that on the one hand new patients may more easily find information about this disease and we thereby on the other hand, perhaps may stimulate the chance of the development of a cure. So we can all have a real future.