top of page

Bad bad news

  • patriciaberkhof83
  • Apr 11, 2021
  • 2 min read

Got the results back with the worst news. One of the tumors became resistent to the chemo and not only resistent but also more aggressive so it's already huge. The regular treatments are over and clinical trials is the way forward. This news hit me like a bomb.


From the start I knew this chemo (Doxorubicine) was a long shot. There is no specific chemo or drug to cure this disease. The cancer treatment world is moving more towards DNA specified treatments and on that I got my hopes. Last year they took a biopt of the tumor and did a DNA test (WGS). My tumors do have specific characteristics and they do have medicines that can maybe stagnate the growth or some immunotherapy, but those medicines are still on trial. Matter a fact, a lot of different trials, so a lot of opportunities but yet no holy grail. So why didn't we start with this? The answer is you can only enter these trials if you have tried regular treatments. Doxorubicine is the regular chemo for my disease, so that was step 1 in my journey.


So at first I didn't expect too much, but my midway scan showed really good results (an 50% average shrinkage). Based on that I was sure the worst news was stabilization and that was already fine with me. I could see me do the ' normal' living with cancer on the background and was already planning ahead. So I really was too positive and this news hit me hard. I haven't felt like this in a long time, last time was in August, the day they told me the cancer had spread. Going outside and confronted with the daily routine of people is hard and when i'm finally going to do groceries I find myself just staring at some random product until my husband gets me out of this zombie gaze. Together with my family, we feel complete powerless.


So the good news is we're moving to medicines that are more tailor made. Next week I hear more about a clinical trial from my oncologist and i'm collecting all the trials I can find (via My Tomorrows and Cure Match). These trials are based on my DNA results that showed the presence of TP53, EGFR and PD-L1.


And for my emotions: I can be negative or positive. I choose positive.


ree


Comments


bottom of page