Protocols: An enemy for rare cancers (especially after this week)

How am I going to break these barriers, these protocols. Suddenly time is running out.

In my latest blog I told the suddenly bad progression of one of the tumors after chemo. My oncologist said the next step is attacking the tumor from another angle and that’s not by type cancer, but specific DNA markers. And that always made more sense to me.

Please open the door

So full of positive vibes I went to that intake and basically, long story short, they shut the door for me. I don’t have the right type of cancer, although I have the right DNA marker and they never tried it on my type of subcancer. I can imaging this for trials, where they have to obey certain rules. But...also for that they can contact pharmacies for a compassionate trial. Where I really have difficulty understanding is why not trying it from another angle: experimenting with regular treatments for other cancertypes with the same dna markers. They do this in other countries, but again not here. In other countries there have some first positive results with EGFR or/and immunotherapy on sarcoma. My oncologist said that money wasn’t the issue. So why not trying, I mean it’s exactly why they took the DNA in the first place, so please open the door for me.

Overtaken by Phyll

Before I could even try to get out of this conservative vision, it was not only me angry but also my biggest Phyllodes tumor. Saturday a week ago I woke up with really difficult breathing and my husband called the ambulance. They couldn’t hear one lung. In the hospital they found 4/5 liters of fluid and for more air they removed almost 2 liters. The tumor is on a critical place in the lung and causes a pleural effusion. This moves the timeline for the next phase in the treatment plan to ASAP. That day I went home, but the next day back in the hospital, admitted and now day 8 is ticking away. The plan is:

1. Biopt from this particular aggressive tumor for WGS testing (again for trial attempt) and to find out if something changed in mutation

2. Remove fluid: that takes 4-5 days via drainage

3. Radiotherapy

4. Pazopanib (growth blocker)

Currently I’m at step 2 with great caring hands from the lung department, already working around the clock due to COVID. Step 3 hope to get soon, step 4 still hoping for something else. So I have a couple of weeks to sort things out while undergoing treatments.

And how am I doing? Bad and good moments, but also tired of people poking in my body and sometimes just the drugs;-).

My view is one of the oldest parcs in Rotterdam: The Parc (yes, much effort in naming). With this beautiful weather I see people walking, drinking beers with friends, taking the dog out or running. Just a happy picture and at that moment I feel like a 80 year old woman peeping outside, gasping for breath. At that moment I envy the actually old man outside, running like a 38 year old.

Every day I can have 1 visitor (the same one) so I have to choose between the people I love. These rules are for my own protection, but that doesn’t make it easier. It demands a lot from my environment, who do everything for me but continue to feel powerless in this disease and these rules makes it harder. So glad with video calling these days.

So, right now having a hard time and working hard to get home, but never loosing my fight spirit. And every day we find something to laugh about.

Bad bad news

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.

CT scan day