Korina Pateli – Bell, president of FAIRLIFE L.C.C. shares her testimony on her husband’s fight with lung cancer during the Webinar organized by ELLOK (Hellenic Cancer Federation) on the 16th of December 2020.
Full statement of Mrs. Korina Pateli-Bell
Hello, I am Korina Pateli Bell, wife of Simon Bell who lost the battle with lung cancer in August 2020 at the age of 57, leaving behind me and our two young children. Many thanks to Mrs. Apostolidis for inviting me to this online conference because it gives me the opportunity to briefly describe our experience.
Simon developed persistent cough that did not respond to antibiotics in July 2019, and was diagnosed with lung adenocarcinoma one month later. He was initially treated with chemotherapy, and later chemoimmunotherapy with the prospect of surgery, from September to January 2020. However, unfortunately there was no response: the disease progressed, a new adrenal metastasis developed, while Simon suffered from severe side effects that necessitated hospitalization and blood transfusions. From every corner of the earth, our country, England Germany, America, several experts we talked with stressed that Simon urgently needed to be treated with a novel drug available then within a clinical trial study, which would be, perhaps the only possibility for him, to live longer, to change the course of the disease, and for all of us a perspective and a path of hope. Thus, an odyssey began in quest for the drug. The clinical trial was not active in Greece and I would like to dwell on why. There are currently only 25 clinical trials for lung cancer in Greece. Lung cancer is the leading cause of death, with over 8,000 people losing their life annually in our country and usually when diagnosed, 7 out of 10 have already developed metastases, ie have a poor prognosis and few treatment options.
We thoroughly investigated the matter. We found out that the clinical trial had been completed in Europe, in the centres where it had been active before. We managed to arrange an appointment in the US, at the MD Anderson Cancer Center in Texas, which unfortunately had to be cancelled twice as we could not travel due to the pandemic. After 50 courses of radiotherapy followed by development of additional metastases, we were granted special permission to travel by the American government (unfortunately the Greek government could not help us). We made a new appointment on the 29/6, this time in Colorado while Simon had been already hospitalized again, with new metastases and superhuman efforts are made in every way in order to help him. We continued to make every effort to get the new drug as it was his only hope since no comparable or satisfactory alternative therapy option was available and his situation was life threatening. We asked that he would access of the drug in Greece because our country has excellent doctors and clearly the infrastructure to monitor the patient during a clinical trial.
Unfortunately, Simon did not manage to get the drug and missed the upcoming appointments in America due to development of new brain metastases which were an exclusion criteria.
We had arranged to fly to America on a stretcher, to sell our house, because a hospitalization in the US meant hundreds of thousands of euros. Simon experienced horrible pain and with him and us who saw him. I wish, for every child in the world, not to experience losing his parent the same way my own children did. Everything was lost for us. No opportunity. No possibility. No hope.
This step inspired us to establish the FairLife Lung Cancer Care, in order to provide our fellow citizens facing similar conditions, with infrastructure and sources of information.
Our country has the potential to offer hope. Treatment within clinical studies in Greece is free of charge for all patients and are often represents the only hope for them. Every patient should have the opportunity to participate.
FairLife, the first non-profit organization dedicated to lung cancer, aims to create the information infrastructure that will provide guidance and perspectives for patients suffering from lung cancer, in our country.
There can be many benefits.
To raise awareness for prevention and early diagnosis of lung cancer, improve access to comprehensive molecular testing, facilitate expert second opinions from leading centers abroad if required, support access to novel drugs and participation to clinical trials, contribute to the expansion of palliative care and hospice services, which are still very limited in our country.
My husband unfortunately did not make it, but by creating this non profit organization and you’re your support we want to be able to help the next patient be successful in his fight against lung cancer. Together we can make the difference!
Thank you very much!
