Elad Shilo’s story – coping with endocarcinoma lung cancer
At the age of 43, Elad Shilo discovered that he had stage four lung cancer, and ever since, he has been fighting for his life with the help of biological drugs. In the midst of the crisis, his wife set out on a mission: the establishment of a non-profit organization for lung cancer patients and their families, in order to make information accessible and to support each other. “Not everyone has a doctor who is willing to take chances or people who understand the research,” she explains.
On 20.11.2014, Edna Abramson published that, when people say “lung cancer,” the next word that comes to people’s minds is usually “smoking.” But this disease, which constitutes the highest mortality rate among men in Israel, is liable to attack anyone, even those who do not smoke.
At the age of 43, Dr. Elad Shilo, a Meteorological Service researcher, discovered that he had lung cancer, and is at the advanced stage 4 of the disease, which means that the tumor has metastasized. He is not a smoker, has no family history of cancer, and, up until then, had been considered healthy and athletic. Since then, for three and a half years, he has been in a constant fight for his life.
“Elad had been healthy and active, and suddenly, he began coughing, mainly at night,” says his wife, Dr. Shani Shilo, during an interview with ynet. “The doctor said that it was an allergy, and so it continued like this for two-three months. In retrospect, there had also been other warning signs. Suddenly, he was running out of air in the middle of walking, for example, and he thought that he was simply out of shape.”
“It went on like this, until we pressured the doctor to do a lung x-ray, thinking that maybe he has a quiet pneumonia. He had fluid in his lungs and he received antibiotics, but after a week, his condition had only gotten worse and, after a difficult night of shortness of breath and heart palpitations, Elad decided to drive alone to the emergency room. At the ER, they gave him a CT scan and hospitalized him in intensive care, since it became evident that he had fluid around his heart and lungs.” Survival rates are low.
In the intensive-care unit, the doctors suctioned the fluids and sent a sample to the lab. Ten days later, we got the bad news: Elad has stage four lung cancer. Malignant cells were found in the fluid.
“The shock was tremendous,” said Shani Shilo, who collapsed on the floor when she heard the bitter diagnosis. “Elad did not smoke. It simply came out of nowhere. It is absolutely inconceivable to imagine this situation. The prognosis for the disease is very bad, and half of the patients die within one year. At issue are very low survival rates. It is simply horrible.”
– What was the first step that you took?
“The next day, we were with the oncologist, and after that, we were at home for three days. All of a sudden, Elad wanted to arrange all kinds of things and paperwork at home. After that, he underwent a test to detect whether a mutation is causing his lung cancer, which could mean that there is a biological treatment that could help him. The test result was negative, and the doctors said that Elad can only be treated with chemotherapy, which might extend his life by three months. Every day, we received more news like this.
Elad received three rounds of chemotherapy, and it was very difficult. He did not respond well to it, and then, it became evident that the cancer had metastasized into his bones. To our great luck, Prof. Nir Peled, the Director of the Chest Tumor Research Center at Sheba Hospital and an lung oncologist at Beilinson Hospital, did not give up and succeeded in sending Elad’s biopsy for gene sequencing. A month later, we received a surprising answer: that he does have a mutation, for which a biological treatment is available. The previous tests had missed it.”
Elad discontinued the chemotherapy and, one month later, began to receive the biological drug. Within a few days, he began to feel better. The PET CT performed a month and a half later proved that Elad’s tumors had shrunk by 50%.
“For a year and a half, the drug gave Elad a good quality of life and he was active at home,” Shani explains. “But then, he began to suffer from headaches, and it became evident that his entire brain was filled with dozens of metastases that were impossible to even count. The radiation treatments did not help and once again, Elad’s condition was very bad. They changed the drug and we succeeded in arriving at some improvement.”
“The biological drugs gave hope and better quality of life than with chemotherapy. It gives us more time, during which, new drugs might be developed, but it is no simple matter. Elad is already receiving the second generation of the biological drug.”
After changing the drug, Elad “dragged on another year in not too bad of a situation,” as his wife described, but, one night last April, he had convulsions and experienced confusion, and his condition began deteriorating, which he is also contending with today.
“In recent months, Elad has been saying that he wants to die, if this is what his life is like,” says Shani. “These treatments extend his life, and sometimes, one needs to ask, at what price? On the other hand, in the final analysis, life is stronger than we are. Surviving is, after all, a basic instinct of every living creature. We are both very realistic. This is an incurable disease. Elad will not live 20 years; he will not be with me when our children get married.”
Elad and Shani are copying physically and mentally in front of their two children, who were nine and six years old when the initial diagnosis was given. “They see what he is going through and what I am going through,” says Shani, “including the times when he is confused and impatient, or when they are evacuating him in an ambulance. It is very difficult.”
New NPO for patients:
About a year ago, Shani decided to go to battle for all lung cancer patients in Israel, and founded the first Israeli nonprofit organization for lung cancer. “Every third person who dies from cancer, dies because of lung cancer,” she says. “It is the most prevalent cancer among men and, among women it is the second highest cause of death after breast cancer, and despite this, people are not talking about the disease and there are many stigmas associated with it. True, smoking increases the risk significantly, but 20% of patients do not smoke at all.”
“I wanted people who receive this horrific news to be able to go to one place with all of the information available and up-to-date. I did not want them to have to search for information and innovations in the battle against the disease, and want to make the information accessible, to enable patients to receive it with a single click. The second objective is to create a platform where patients and their families can exchange information and receive support.”
“Family members are the ones who are contending with the side effects and the depression, and we need to find tools to help the patient. We need to know what we can offer him to eat in order to minimize the diarrhea during therapy, for example, or what the next drug is. There is a lot of information that we can exchange and share and help each other. The purpose of the NPO is to help patients, but also to help those who are taking care of them as much as possible, because we ourselves are going through a very difficult time. It puts the whole household in a huge turmoil.”
“Patients and their families need to know all of the options, and they need a platform to receive answers, not only from doctors, but from people like them, who are experiencing the same problems in the same situations. Only we can help each other, with the small things and the big things.”
As soon as she understood that there is a need for a body that will constitute a unifying house for patients and their families, Shani devoted considerable time and resources to found the NPO and, in the coming days, the website will be launched that will centralize all of the information.
“I want to change the awareness of the disease,” she says. “There are also young people who are nonsmokers who are contracting lung cancer. Despite the immediate thought by some people that ‘whoever smokes – he deserves it.’ Life is a wheel of fortune and sometimes, you have bad luck. It does not depend on you.”
Shani’s vision is for the prognosis of the disease improving and that it will not always be an immediate death sentence. “The time has come for lung cancer to have a face and a voice. We are also contending with the drug basket, which contains three new drug candidates for treating lung cancer. The time has come to put this on the public agenda and enable patients to receive all existing treatments.”
“Everything we are going through made me understand that we can do something to ease the difficulty and pain of others, and this is my calling. Not everyone has a doctor who is willing to take chances or people who understand research and medicine, and I have already encountered instances where people died as a result. We do not always understand that sometimes, just the mere fact that we are there, offering the information, the willingness and ability to cope – is the biggest help there is.”
Elad is currently receiving the new drug, and his family hopes for favorable results. “Since the beginning, I said that I hope that he is around when our son has his bar mitzvah next year,” his wife says, “and I hope that he will enjoy a good quality of life.”