A CT scan is always exciting. And this week a CT scan is scheduled to see the state of the remaining tumors. It should be routine by now, but GIST tumors are found to be unreliable hooligans that you should keep an eye on. And this time it’s even more exciting, and that obviously has a reason.
The reason is that in 2013, after I heard at the Radboud UMC that metastases were detected, I was prescribed the drug Glivec. That medicine could namely slow down or even shrink the growth of GIST tumors.
The oncologist told me also that your body can be resistant after a certain time. Although some patients use it without problems for 15 years, for me a CT scan revealed after 1.5 years that resistance occurred.
That gives the tumors, however, no free play because mean while an alternative drug had become available, called Sutent. Also against this medicine you can, over time, become resistant and the side effects are often more intense. But here I was lucky, because to me these side efects were just a lot milder.
A reasonably satisfied patient therefore, untill my body felt the need to throw a spanner in the works. Almost all the hooligans were shrunk, except for a stubborn one at my navel. Who needed more drastic measures. The Mobile Unit was deployed, ie the tumor was surgically removed. But just as with other hooligans, this one still kicked a mess. This manifested itself in the form of an unexpected abscess, and I was left with an open abdominal wound.
And then the problems really started. The abdominal wound must close by naturally grow and Sutent proved thereby to be a bummer, because this medicine prevents the growth of new cells. That must naturally be the cancer cells, but also new, healthy cells were inhibited. In short, I had to stop with the use to be able to cure the open wound.
And a cancer patient without medicine is like a soccer match Ajax-Feyenoord, while at the same time the police hold a strike. You do not really feel reassured, which also showed when at the end of November by a CT scan, not unexpectedly, was found that all the tumors in my body had grown again. While my abdominal wound still was not healed.
Good advice is expensive, and therefore my oncologist suggested to use Glivec again for the time being. This drug has a different mechanism of action than Sutent and no effect on cell growth. Moreover, practical cases were known in which, in spite of previous resistance, the drug after a period of time, yet could be successful again.
One drawback was that I got it all the side effects again, without knowing whether the drug actually has an effect. That only shows at the next CT scan scheduled for Friday. And, while the abdominal wound is almost healed, I now also have another new open wound caused by the recent removal of fistulas.
It is actually a kind of lottery in which I will soon (the result of a scan takes a week) will be told by the oncologist that:
1. Glivec works, the hooligans are peacefully and I provisional can continue to use it (untill a new resistance occurs).
2. Glivec has done nothing, and so I’m still resistant. Which also means that the tumors have grown again. But that I have to wait until all wounds are healed before I can use Sutent again.
3. Glivec has done nothing, but the size of the tumors in relation to the severity of the wounds is so small that I can start using Sutent again.
And those uncertainties makes it this time more exciting. For me, even more thrilling than the soccer match Ajax-Feyenoord. Because what are the hooligans doing in my body?