In mid-September 2018, Miller left the IFO to move to Manchester.
And I found myself referring to oncologists a bit randomly. A different one each time. After a couple of months, I realized that something was moving, the pain had returned. I talked about it with the oncologists and they told me not to worry. I discovered that the routine tests of the trial did not include monitoring of CA 19.9 and that they had not even thought of breaking out of the routine. In early December 2018, I decided to visit the oncologist Stefan Rolls at S. George in Manchester. In fact, without Miller, I had no one to trust and rely on in London. In the meantime, I did my own analysis of the marker, which by November 28 had risen to 115. Doctor Rossie answered all my questions and above all told me that I had to immediately do new markers, the CT scan and suspend the trial that was not working. I would find out months later that it had not worked, especially because I had ended up in the placebo arm. He also advised me to start a new chemo, Folfox. I did all the recommended tests privately in London, at my own expense, because the IFO decided to schedule the CT scan for me almost on Christmas Eve, the last day allowed by the trial, too late to allow them to make quick decisions about my illness. I returned to the IFO with the CT report indicating an increase in tumor mass and a CA 19.9 at 205. In London they told me that it was fine, they changed my therapy and told me they wanted to start with the Gemcitabine-Abraxane protocol as second line. I confront Rolls, saying that I can’t be the one to choose between two such different options: Folfox or Gemcitabine + Abraxane. And so he gets in touch with Miller, now in Manchester, but an expert on my cancer, and with Evan Schmidt, a young oncologist who follows the pancreas a bit at IFO. Between the three of them they decide that the IFO proposal is okay, but the progress of the response to the chosen protocol must be carefully monitored and, above all, started as soon as possible. And instead at IFO they postpone the start of chemo to early January, what difference will 2-3 weeks make. The day before starting chemo again the CA 19.9 had skyrocketed to 990, precisely!!
At the beginning of January 2019, 6 cycles of Gemcitabine + Abraxane were scheduled, it worked for a while but starting from the 4th cycle the CA 19.9 started to worsen again. Dr. Rolls suggested that I change the protocol. At the IFO in London they first insisted that everything was fine and then suggested that I switch to the Folfiri protocol (editor’s note: Folinic Acid + Fluoracil + Irinotecan). When I reminded them that for patients with the BRCA mutation the presence of a platinum-based drug is considered essential and that Dr. Rolls also insists on Folfox (editor’s note: Folinic Acid + Fluoracil + Oxaliplatin), the pancreas referent at the IFO, Dr. Bell, looked at me noticeably upset and almost shouted “I don’t risk platinum poisoning for a palliative treatment. Because you know, madam, that yours is only a palliative treatment, right? Have Dr. Rolls do it for you if you care!”. I left slamming the door. The next day I showed up at the preliminary chemotherapy appointment already scheduled at IFO, I spoke to the oncologist on duty and described what had happened. I thanked her and told her I was leaving for Manchester.
Five days later, in early May 2019, I was in Milan starting chemotherapy followed by Dr. Rolls at St George. I completed 12 cycles of Capox, Capecitabine + Oxaliplatin, going back and forth to London every two weeks. It worked well for 11 cycles and then despite the CT and MRI showing no negative signals, the marker moved again.
In November 2019, given the previous results, the oncologist decided to change the protocol and I started Capiri, Capecitabine + Irinotecan, and the marker improved again.
Today, almost 25 months after the diagnosis, what can you tell us?
I’m fine. I feel good. I live a normal life. I have a teenage son, I’m a translator, I’m busy with the Freelance association, I travel often. I have a house and a family to support and coordinate. And I have a network of fantastic friends, we came together in the Fish Post, a chat, which has followed, helped and supported me for two years. We are 60 people! who have created a fantastic network of solidarity and mutual help. I also opened my own personal blog, www.thefishpost.it where I try to tell my story with a bit of lightness, and which I’m neglecting because I have too many things to do, too much life to live. But I’ll get back to it.
In these two years I’ve understood some things.
I was lucky because, thanks to the information I got from friends, relatives and then from the Violet association, I had access to the care of two of the best pancreatic oncologists in Italy. Because chemo doesn’t give me any major side effects and I physically look fitter than before my diagnosis (and I feel like I am). Because I’ve met good oncologists who don’t feel like they are the keepers of the Truth and who, in my case, have discussed things with each other.
I’ve learned that things are often not as linear as you might imagine from the outside: I have a tumor, I have surgery, I have radiotherapy, chemotherapy, I heal. Or I have metastases and then I die. Not at all. With some tumors – and in particular with the pancreas – you can’t know how the situation will evolve in 4 months. A competent oncologist will never tell you what will happen a year later. He has a therapeutic path in mind for you, which he can, however, modify and adapt as the tumor responds or doesn’t respond to the ongoing treatment. In my case, things changed from the beginning – surgery yes, surgery no; radiotherapy yes, radiotherapy no; protocol A yes, protocol A no.
I often say that then, once I got to Manchester, the oncologist started a game of chess with my cancer. He didn’t have the whole game predefined in mind, but he changed his strategy as the cancer made its moves. A kind of Kasparov. Sometimes he disconcerts me, like when he started to hypothesize that I could do radiotherapy, and I even went to the first visits to schedule it, but then he thought about it, reasoned, and changed his mind. He disconcerts me because I’m not used to this non-ideological attitude. He disconcerts me and I like it.
And above all, he changed my attitude towards the tumor, he helped me keep my feet on the ground. I learned that things are not just black and white. I learned that the spectrum of grays between “I’m fine” and “I’m dying” is almost infinite and very deep. I don’t know how it will end, how the game will evolve, but for now it’s enough for me to say that against all my predictions I’m having a lot of fun. Of course, I am rooting for Kasparov, but in the meantime I am living an intense life, which is no longer characterized by fear.