In the beginning...

My suitcase is open (July 19th 2010)
I was born in El Salvador and migrated to Australia with my family at 18 to run away from the civil war. I migrated again, this time willingly to pursue a PhD in psychology at the University of Geneva and again to do a postdoc in California (UCSB and Stanford). I moved again, now with two kids, to settle as a professor in management at the prestigious Solvay Business School at the Université Libre de Bruxelles. We bought a house. I always felt I had my suitcase next to the door ready to leave…I had to admit that for the first time I had everything to put the suitcase down and simply “be happy”.
In May 2008, precisely on “Euro melanoma” day I got a phone call from the local dermatologist telling me the mole he had taken out was melanoma. He added quickly “thin” and “probably would be fine”, he gave me some statistics…but I was already cold and not listening. I had the first surgery and sentinel node biopsy which placed me at a comfortable stage 1b. I googled melanoma up and felt like vomiting. I searched the dermatologists´ eyes for cues…but I was getting the “standard” follow-up, “do not worry”. I worried. At my second 3 monthly follow up the radiologist saw a node under my arm that “we should keep an eye on”. A month later I insisted to get it checked. And 2 months later, many nodes had grown. Fast forward to March 2009 a lymphadectomy: 25/45 lymphnodes taken out have melanoma. I do radiotherapy, meet my oncologist and start my first trial with dendritic cell vaccination and interferon in August. I feel like crap, exhausted. I continue working full time and right before Christmas, on December 18th 2009 the week I get tenure I am told I have a distant metastasis. I have a photo taken with the kids that Christmas in Geneva. I was feeling numb that day. I could see no future. On the 7 hours drive back home to Brussels I cried hiding from my two boys, 3 and 8. Yet the moment I crossed the door of our house I knew I had chosen to live.
I come back to my fantastic medical team (oncologist, dermatologist, and surgeon in 3 different hospitals in Brussels) and things go quickly from there on. The words “systemic’, “low tumour burden”, and “targeted therapies” enter. I google this time knowing what I want, I feel empowered. My oncologist can only offer chemo (5-13% response). I have by now found the US based melanoma international foundation. We are not exchanging cookie recipes on this forum but trial information. I find a trial with a new targeted therapy PLX4032 in Paris. Not even my oncologist could find this from the company who is running the trial. I have surgery taking out 5 small tumours end of January and my surgeon gives me the good news: I carry the BRAF V 600 mutation. The same week PLX 4032 (anti BRAF therapy) is on the front page on the New York Times 3 days in a row I am at war with my health insurance because they do not want to give me the E112 form to get access to the PLX4032 trial in Paris. I am literally on “fight” mode when I stumble on the webpage of ECPC. They want to hear from patients stories related to “Cross-border health”. My eyes and ears are wide open as I bulldoze and fight with their support to get the right to go to Paris (I also get support from my medical teams, many patient associations and individual patients who are like the Robin Hoods of cancer, my university and colleagues, lawyers, and a story on the national “LE SOIR” among others). We win.
Bitter sweet victory. This was by far the most eye opening experience of my life. What if I had not been asymptomatic and feeling 100% physically? what if I had not had the education that allowed me to digest the information in different languages quickly and react to it? what if I had not dared contact all the people I did? what if I had not known the people I did?
A few days later I met a person in one of my “what ifs?” Quentin was like me, a melanoma young patient with two young kids. He was under morphine and with a heavy tumour burden having failed everything else. He did not have time. I found out the same week I got accepted in the Paris trial he was refused in another targeted therapy trial because he was told obtaining the form E112 would be too hard and they had already refused other Belgian patients that week. Luckily he was accepted in the very same trial in the US (see Quentin´s story), and he is alive today.
My personal victory was short too. I entered the trial in Paris knowing perfectly well it was a phase 3 randomized non-blind trial comparing PLX4032 (showing up to 60-70% responses) with standard treatment of care = chemo (with 5-13% responses). In the patient forums we were all asking each other whether we got “the good arm” of the trial. Patients clearly saying that if they were to get “the bad arm”, they would leave the trial.  I got randomized and got the “bad arm”. Luckily for me the tumours were at that stage “too small” to have as measurable target, so I was able to leave the study. As a psychologist I thought, how can they design such a study? Have they not heard that just like placebo effect you can create nocebo effect? The design of the study just seemed psychologically cruel and unethical. I found out later that in fact in cases like this where there is no “standard treatment of care” (as is the case in other rare cancers), patients are allowed to cross-arms if their disease progresses, or they create another compassionate phase II trial for patients having progression. Solutions exists, yet as I write this there are new phase 3 trials coming up for melanoma with the very same design, non-blind randomized chemo vs new drug that has show strong responses…
In this path too I stumbled upon other issues like attempting to access an international trial in the UK testing an innovative cancer vaccine that is showing response but I was told: “it was only accessible to UK citizens”. How can this be? Is the UK not part of Europe?
As my path of cancer survival continues, and just before trying to join the next trial, I have finally decided to put down my suitcase and have started to take out things. I am meeting other survivors, but also passionate people who work behind the political scenes on health (nationally and at the EU level), people in the pharmaceutical industry who care, and doctors and other health professionals engaged actively in the survival of their patients. What is energizing is to realize that in fact many of the existing hurdles confronted by cancer patients and by other cancer “stakeholders” in Europe exist because we have simply forgotten WHY. Sometimes in cancer world it seems indeed that efforts from politicians, pharma industry and even doctors are focussed on HOW, how to reduce the burden on cancer costs, how to find blockbuster drugs faster and bring them to the market quicker, how to enhance Overall Survival not matter what, how to take out the next tumour out... If the main concerned – US the patients - are recognized at the centre of the debates and are actually communicated with, we might all just remember WHY…
Patricia