There are many people out there who have used different methods to beat mesothelioma. Some have used experimental treatments. Others have opted for aggressive medical and surgical therapies.
How to Maximize Your Own Survival Chances
Even though mesothelioma carries a poor prognosis, it is important to remember that everyone’s story is different. You can survive your diagnosis with the right combination of treatment and commitment to live.
Here are some things mesothelioma survivors have done about their diagnosis:
- Learned all they could about the disease and never gave up the fight.
- Stayed as healthy as they could. This helped them tolerate the treatments better and heal faster.
- Found out more about treatments that have helped others.
- Were open to experimental treatments and clinical trials.
- Maintained a positive mindset through support networks or counseling.
- Stayed connected with their family, giving them a reason to live.
All of these things can contribute to your being a mesothelioma survivor just like the people mentioned below. You can also learn more about improving your prognosis in your free Mesothelioma Veterans Guide.
Stories of Survival
Alexandra was diagnosed with peritoneal mesothelioma in the late 2000’s. She was 42 years old when doctors found her mesothelioma. Her doctors found it accidentally when she underwent treatment for gallbladder disease.
She decided to have aggressive surgery to removes tumors and part of her diaphragm. She is still alive after more than five years. She was recently married, refusing to let the cancer take away her happiness. She still lives with the idea that she might have traces of mesothelioma inside her body. But she is still alive. She has become a long-term survivor.
David was diagnosed with pleural mesothelioma at age 63. That was back in 2010. He was diagnosed with stage 4 mesothelioma. He wasn’t given long to live. Fortunately, he lived near one of the major mesothelioma centers in the country. He enrolled in a program that was testing chemotherapy along with Amatuximab. Amatuximab is an antibody that attaches to a protein that surrounds mesothelioma cells.
He has survived far longer than his projected survival time. David continues to take Amatuximab as a way of keeping his mesothelioma in check. He credits his survival to joining the clinical trial of Amatuximab. This is how he improved his survival well past the few months most people with stage 4 mesothelioma live.
Sandy was diagnosed with pleural mesothelioma in 2011. Her tactic to fighting mesothelioma was to learn everything she could about the disease. She underwent multiple surgeries, ending up with a pneumonectomy in 2012. This aggressive, lung-removing treatment has clearly paid off.
Because of the treatment she received, Sandy has lived long past the original prognosis she was given. She credits her success to being a fighter and doing whatever she could to get rid of the disease. She is living a successful life, continuing to battle a her cancer.
Marge was diagnosed with peritoneal mesothelioma in the late 1990’s. She was 47 years old. She decided to use only alternative therapies for her condition. She used therapies that strengthened her immune system so it was able to fight off the disease. Her treatment involved injections of serum from healthy donors who did not have mesothelioma but had strong immune systems.
The treatment worked even though she was initially given less than a year to live. She uses homeopathic remedies and herbal therapies to this day to keep her immune system strong. She has survived more than ten years so far. She credits treatments she received in the Bahamas as factors contributing to her survival.
Tom was diagnosed with pleural mesothelioma in 2002. He was 42 years old. He was given less than a year to live. When he first heard this, he was ready to give up. But his family convinced him to have aggressive surgery. With the support of his family, Tom had an extrapleural pneumonectomy (EPP).
He underwent the surgery in Boston. The surgery gave him more than a decade of life he didn’t think he’d get, far beyond his original prognosis. Like a lot of patients, he still lives with some chronic pain. This is most likely because of his aggressive surgery. Despite this, he feels like he has lived a lifetime in the years since his surgery.
Tom also won a settlement because of his asbestos exposure on the job. The settlement has helped him pay college tuition for two of his three children. He credits his success to having aggressive surgery and to never giving up. Tom feels he is a true mesothelioma survivor.
Tina was diagnosed with peritoneal mesothelioma in 2001. Still in her 30’s, Tina was diagnosed young. This is because was exposed to asbestos as a child. She underwent cytoreduction with HIPEC to treat her cancer. She also had radiation treatment. She just never gave up and decided she would live to see her children grown.
More than a decade later, she still has some pain from surgical scar tissue. But Tina enjoys seeing the country every day with a longtime friend. She is grateful to the doctors who recommended her procedure and has no regrets. She says she still lives with the thought that mesothelioma may still be in her system but she tries not to worry. Instead, she is enjoying life as a survivor of mesothelioma.
Almost all mesothelioma survivors have several things in common. These are things that led to their cancer remission. But there’s only one thing they have that really matters. They took control of their treatment plan. They pushed for the most aggressive surgical treatments. They persistently asked their doctors about clinical trials. Mesothelioma survivors educated themselves. They researched new treatments on the internet and asked their doctors about them.
Through all this hard work, the people in the stories above became mesothelioma survivors.
Here are some of the top treatments that have led to long-term survival in mesothelioma patients:
- EPP with Intraoperative Chemotherapy. The extrapleural pneumonectomy (EPP) was the first effective surgery for pleural mesothelioma. It has led to the survivorship of many patients. The surgery itself removes the diseased lung, diaphragm and lining of the heart. The goal of this surgery is to remove as much of the diseased tissue in the chest as possible. After the removal of the cancer, some doctors use chemotherapy to wash out the chest cavity. This is called intraoperative chemotherapy. It’s purpose is to kill leftover mesothelioma cells that surgeons can’t see. Some studies have shown that 25 percent of patients getting this treatment had long-term survival of more than 5 years.
- P/D with Radiation and Maintenance Therapy. The pleurectomy with decortication (P/D) is championed by Dr. Robert Cameron. He’s considered one of the best mesothelioma surgeons in the country. At his cancer center, patients go through a three-part process to reach cancer remission. First surgeons perform the P/D, removing the lining of the lung and tumors in the crevices of the lung. After surgeons remove all visible signs of mesothelioma, they apply radiation to surgical area. The radiation helps kill leftover cancer cells and then the patient’s chest is closed up. Following this aggressive treatment, patients are put on a regimen of maintenance therapy. Dr. Cameron says his patients “begin long-term maintenance therapy with daily self-administered injections of an immunotherapy.” This is after radiation and surgery. It prevents mesothelioma cells from coming back.
- SMART. This is an experimental treatment. Patients receive a massive dose of radiation days before getting an EPP. The idea behind this surgery is to kill off all mesothelioma cells in the areas surrounding the affected lung. Once it’s time for surgery, the mesothelioma tumors around the lung have shrunk. Doctors remove the lung and surrounding tissue without the disease spreading. SMART is still a new therapy requiring more research. Patients who had this treatment in clinical trials survived years past their initial prognosis.
- Cytoreduction with HIPEC. This is the mainstay of treatment for peritoneal mesothelioma patients. The cytoreduction procedure removes all visible tumors in the abdomen. The next step is heated intraperitoneal chemotherapy or HIPEC. After the surgeon removes all the tumors, he applies heated chemotherapy directly inside the abdomen. Dozens of peritoneal mesothelioma patients who became survivors thanks to cytoreduction with HIPEC.
Immunotherapy. Like the way Dr. Cameron uses immunotherapy, other doctors do the same. Immunotherapy works well as a maintenance therapy for mesothelioma survivors. This treatment is easy and studies show it is effective. Patients can self-administer injections of immunotherapy every day.
Being a mesothelioma survivor is about long-term maintenance. The initial surgeries and treatments are important to induce remission. After that, many specialists treat mesothelioma as a chronic disease that requires medication to prevent it getting out of hand. It’s the same mindset used in treating diseases like diabetes. Other maintenance therapies include chemotherapy and radiation if there is a mesothelioma recurrence.
Learning from the Survivors
Mesothelioma survivor stories show us what’s possible with a little luck and the right attitude. The best mesothelioma specialists always say that hope is one of the most important factors for survivorship. Survivors are patients who ignored the statistics. They got second opinions and made sure they got the most aggressive treatment they could.
Here are some tips for taking taking control of your disease:
- Make sure you like your specialist.
- Always get a second opinion. (Even the best doctor can make a mistake.)
- Urge your doctor to prescribe surgery.
- Ask about clinical trials no matter what treatments you’ve had already.
Veterans have a wider spectrum of options than most mesothelioma patients. There are mesothelioma cancer centers and specialists across the country ready to help you. And there are two VA hospitals each with a team led by the top specialists in the country. Find out more about the top doctors.