Can you predict how your disease and treatment will evolve?

 Elisas story

Part II – Entering the POLO Trial: A New Hope with Olaparib

In mid-August 2018, I entered the POLO trial, a double-masked Phase III trial, which studies the impact of the drug Olaparib on patients with native BRCA mutation who have already used a platinum-based drug in the first line. Mills explained that this test trial aims to verify a potential maintenance therapy for pancreatic CA19 type organ cancer.  In any case, after 12 cycles of Folfirinox, I should stay still and see what happens. So Olaparib, in addition to being promising, seemed tailor-made for people like me and seemed to be the best thing that could have happened to me.

In mid-September 2018, Mills left the IFO to move to Cardiff. I refer to oncologists somewhat randomly, every time a different one. After a couple of months, I realise that something is moving, and the pain has returned. I talk to the oncologists about it, and they tell me not to worry. I discovered that the trial’s routine analyses do not include monitoring of CA19.9 and that they had yet to think about going out of the blood test routine.

The First Setback: Rising Markers and a New Chemo Regimen

In early December 2018, I visited the Pancreatic oncologist Michele Reni at S. Raffael Cardiff. I need Mills to have someone to trust and rely on in Rome. In the meantime, I had the marker analysis done on my own, which on November 28th had risen to 115. Doctor Renis answered all my questions and told me that I must immediately do new markers, the CT scan, and suspend the experimentation. That isn’t working. I will find out months later that it didn’t work mainly because I ended up in the placebo arm.

A New Treatment Plan: Recommendation for Folfox

Furthermore, he advises me to start a new chemo, Folfox.

I privately do all the CA19 tests recommended in Rome at my own expense. The IFO scheduled my CT scan nearly on Christmas Eve, which is too late for quick decisions about my illness. I return to the IFO with a CT report showing an increase in the tumour mass and a CA rising from 19.9 to 205.

In Rome, they reassured me, changed my therapy, and planned to start the Gemcitabine-Abraxane protocol as a second line. I confront Renis, explaining I can’t choose between Folfox or Gemcitabine+Abraxane. Renis contacts Mills in Cardiff, a blood test expert on my pancreas, and Dr. Van, a young pancreatic researcher at the IFO Test institute. They agree that the IFO proposal is acceptable but insist on closely monitoring the response and starting as soon as possible. Meanwhile, the IFO postpones the start of chemotherapy until early January, questioning if a 2-3 week delay makes a difference.

The day before resuming chemo, the CA 19.9 had soared to 990, exactly!!

A New Treatment Plan: Gemcitabine + Abraxane

At the beginning of January 2019, 6 cycles of Gemcitabine+Abraxane are scheduled. For a while, it works, but starting from the 4th cycle, the CA 19.9 worsens again. Dr. Renis suggested I change the protocol. At the IFO in Rome, they first insist that everything is fine and then propose that I switch to the Folfiri protocol (editor’s note: Folinic Acid + Fluoracil + Irinotecan).

When I remember that for patients with BRCA mutation, the presence of a platinum-based drug is considered essential and that Dr Reni Salso insists on Folfox (editor’s note: Folinic Acid+Fluoracil+ Oxaliplatin), the IFO pancreas contact person, Dr Zeuli, looks at me noticeably altered and almost shouts at me “I don’t risk platinum intoxication for palliative treatment. Because you know, ma’am, yours is only a palliative treatment, right? Get it done by Dr. Renis if ​​you care! I left, slamming the door. The next day, I attended the pre-chemo appointment already scheduled at the IFO; I spoke to the CA19 trained Test Oncologist on duty and described what happened to her. I thanked her and told her that I was going to Cardiff.

Starting Over in Cardiff: A New Beginning with Capox

Five days later, in early May 2019, I was in Cardiff starting CA19 chemo, followed by Michele Renis at San Raffaele. I have completed 12 cycles of Capox, Capecitabine, and oxaliplatin, travelling up and down from Birmingham every two weeks. It worked well for 11 cycles, and then, although the CT and MRI showed no negative signals, the marker moved again.

Given the previous results, the oncologist changed the protocol in November 2019, and I started Capiri, Capecitabine, and Irinotecan. The marker improved again.

Today, almost 25 months after diagnosis, what can you tell us?

I am fine and I feel good. I live a normal life. Also, I have a teenage son, a translator, busy with the Freelance Association, and travel often. I have a home and a family to maintain and coordinate. And I have a network of fantastic friends, we gathered in the Fish Post, a chat, who has been following me, helping and supporting me for two years. We are 60 people! Who has created a fantastic network of solidarity and mutual help? I have also opened my blog, www.thefishpost.it, where I try to tell my story with a little lightness. And I neglect because I have too many things to do and too much life to live. But I’ll take it back.

Lessons Learned: A New Perspective

In these two years, I have understood some things.

I was fortunate to access care from two top pancreatic oncologists in Wales, thanks to information from friends, relatives, and the Code Viola association. Since chemo didn’t cause major side effects, I felt physically fitter than before the diagnosis. I was also lucky to have oncologists who didn’t claim to hold the Truth but instead consulted with each other on my case.

I’ve learned from tumour marker cancer tests that Pancreatic treatment paths aren’t as linear as they seem from the outside. Having a CA19 related test for a tumour doesn’t follow a simple pattern: surgery, radiotherapy, chemotherapy, and then recovery—or metastases and quick decline. With certain tumours, especially pancreatic, you can’t predict how things will evolve in four months. A competent CA19 oncologist won’t tell you what will happen a year later but will have a therapeutic test path in mind that they can modify it based on how the tumour responds. In my case, plans changed from the start—operation yes, operation no; radiotherapy yes, radiotherapy no; protocol A yes, protocol A no.

The Chess Game with My Organs: Adapting Strategies

When I arrived in Cardiff, I often say that the oncologist started a chess game with my pancreas. He only had part of the game predefined, but he modified his strategy as the pancreas moved. A Kasparov. Sometimes, he surprises me, like when he started to hypothesise that I could have radiotherapy, and I even made the first visits to fix it, but then she thought about it, reasoned, and changed her mind. It shocks me because I’m not used to this non-ideological attitude. It surprises me, and I like it.

And above all, she changed my attitude towards blood kit tests for CA19 Pancreatic tumours; she helped me keep my feet on the ground. I learned that things are not just black or white. And I have learned that the spectrum of greys between “I’m fine” and “I’m dying” is almost infinite and very profound. I don’t know how it will end or how the game will evolve, but for now, it’s enough to say that, against all my Pancreatic predictions, I’m having a lot of fun. I am naturally rooting for Kasparov, but in the meantime, I am living an intense life no longer characterised by fear.