The good thing about a specialized GIST village (see the previous blog) is, that you can get there a proper treatment to slow down the progress of this disease. Most doctors on the mainland have namely insufficient knowledge of GIST, or even heard of it. But here on the island, we have next to our own oncologist, also a specialist surgeon who knows how to treat GIST. So that with any surgery, the risk of incorrect operation is minimized.
And the drugs are delivered on time, though (because we have put everyone worldwide in the Netherlands) some people still have to pay a capital every month, while another have (almost) all costs reimbursed.
That means of course, that you need to know that you have to go to the island. And that’s not the case for all patients. Perhaps this is because an island is less easily accessible from the mainland, because you first have to travel by boat. You are less visible (a feeling that shall be recognized by all islanders). And that means that there are many GIST patients. who do not know that they can come into contact with peers. And thus neither can get a good treatment or medication.
But others do come. By ferry, but sometimes only with much difficulty and after many wanderings with their own (rowing) boat. Some even, after achieving many hardships by wading, swimming and walking, manage to reach the island at low tide. Because once you have arrived on the island, there will be less problems.
That does not mean that all problems are thereby solved. For example, in daily practice it appears that the medications not equally works for all GIST mutations. And, in certain instances they not seem to work at all. And, to put it mildly, that sucks of course.
It appears that for patients in the PDGFRA district, Exon 18 at number 842 there is not really an effective therapy. Their only bright spot is that the risk of metastasis is a bit smaller than for other GIST variants, so that when their first tumor is surgically removed, they have thus a slightly better survival chance.
Since I had metastases, you can understand that I am personally very glad that I came to live in the PDGFRA district, Exon 18 at number 846. For thereby I got a better view than some of my direct neighbors.
A few weeks ago, however, came unexpectedly a message that an initial study with a newly developed drug gave a very good result to both the PDGFRA district, Exon 18 at number 842, as well for the KIT district, Exon 17. This drug, called BLU 285, is however yet not so far that it is already approved and commercially available on the market. The next step is a comprehensive clinical test. But it gives these patients new hope.
For them a reason for celebration and, of course, as good neighbors we immediately joined them. If only because I have not read anywhere that this new medication would not work for the patients at number 846.
Incidentally, we have much more parties in our GIST village. Actually, for every successful operation or any favorable outcome of a scan. For each patient, where a first tumor was surgically removed and where, after years, still no metastases are detected. In many cases, those even can go back to the mainland. Out of sight, but not forgotten.
But the main reason that we keep celebrating, is because our main source of life is called “hope”. Also in 2017, and hopefully for many years there after.
And with that, I wish all GIST patients in the world, their families and friends a healthy, hopeful and happy New Year!