They known how to increase the tension. But last Friday I received the message from the oncologist that nilotinib (Tasinga) became available for me. However, with the condition that the oncologist should again have a meeting with me, a new blood sample was taken and that I somewhere had to write a new signature. And a day later I already was on the internet filling the questionnaire of the Radboud UMC about my health situation. Again, because I also had done that more than a week earlier. But security for all, of course, because maybe I was in the meantime become allergic to something, or suddenly a lot shorter or lighter.
For most people this will sound as a minor irritating delay, but as a cancer patient you experience it quit different. Whether or not obtaining a drug, may mean that your life is or is not extended longer. How long, no one knows. That depends particularly from how your body accepts this new drug and if it continues to work. But, conversely, you know in any case that without this medication your chances certainly not will be better.
I therefore participate in the Drug Rediscovery Protocol, or DRUP study, to facilitate patient access to commercially available, targeted anti-cancer drugs tot determine the potential efficacy in treatment of advanced solid tumors with a known molecular profile. The aim is to treat test persons on the basis of their cancer cell-characteristics with targeted anti-cancer drugs, which, however, normally will be used for the treatment of a different type of cancer. And thereby, they want to be sure that a medication in that case can work effectively for my type of tumor.
The latter is already sure, according to the oncologist, but you are in this case required to give up some blood and, in my case through an endoscopy, to have a biopsy. This biopsy, and blood is used in order to identify the DNA (genetic material) of the tumor cells. This system uses a new technique (called Next Generation DNA sequencing), with which it is possible to determine at one time to the entire hereditary material, or in other words DNA, of the tumor and the errors therein. This DNA profile will be used to gather more knowledge about how my tumor responds to treatment.
To be at the safe side, it is also noted that my treatment possible can benefit, but that it is not certain. But it provides in any case, useful data for science and research. And that’s a opportunity that you naturally don’t want to miss….
This same week, moreover, I was confronted with reports of cancer patients who need treatment much harder than me. Firstly Ed, a cousin with a braintumor who’s in bad shape. But the last news was that he was, with his mutation, also eligible for a new drug. Which I sincerely hope will work for him. We will surely meet each other again in the afterlife in a bar with a pool table, but it is certainly not the intention that he arrives early.
And then another message via the mail about another GIST patient, who has already used all the regular GIST medications, but where again growth of tumors and new metastases were found. He was also signed in for this DRUP study, so I hope he now is eligible too and may use nilotinib. Chances are that in that case, we will be at the same time in the Radboud UMC for the biopsy.