Sai Narayana Karanam, 70, has been managing Stage 4 lung cancer for the last 12 years. Targeted medication has worked for him as have his positivity and disciplined lifestyle. He shares his story with us.
My name is Sai Narayana Karanam. I am 70 years old, living in the temple town of Tirupati, Andhra Pradesh, with my wife. We are both retired high school principals, having dedicated our lives to education. We retired 14 years ago. Our only son, a software engineer, resides in the USA but remains deeply connected with us through regular video calls and frequent visits, ensuring we never feel distant.
Today, I am privileged to share a unique journey. I have been living with stage 4 lung cancer for over 12 years, surviving on a single targeted therapy medication, Crizotinib (250 mg twice daily). Despite being diagnosed at an advanced stage, my cancer is now metabolically inactive, and my life has been a testament to the power of medical science, resilience, and unwavering support from my family and friends.
The Diagnosis and Initial Treatment
In September 2012, I developed a persistent cough, cold and throat irritation that lingered for over 10 days. Despite using strong antibiotics, the symptoms persisted, leading my doctor to suspect something more serious. An X-ray followed by a CT scan revealed a mass in the lower lobe of my right lung.
Without delay, my family and I consulted a doctor in Apollo Cancer Hospital Chennai, 120 km from Tirupati. A biopsy and PET scan confirmed the worst: stage 4 adenocarcinoma of the lung that had already spread to the mediastinum and C7 vertebra.
When I first heard the diagnosis, I was shocked but determined to take immediate action. My wife was heartbroken but I drew strength from her faith, as she stood by me with unwavering support. My son, who was by my side at that time, was equally devastated but remained strong, providing constant encouragement and being actively involved in every decision we made. I shared the news with close family and friends soon after the diagnosis. Though shocked, they offered immense support and encouragement, which strengthened my resolve.
At that time, targeted therapies were not an option. I underwent chemotherapy (Pemetrex and Carboplatin) and radiation using TrueBeam technology. My oncologist prescribed Erlotinib medicine after chemotherapy, which I used for nine months until April 2015. Despite the physical and emotional challenges, I remained positive, focusing on each step of the treatment. I paid close attention to my diet during chemotherapy, focusing on eating more vegetables and healthy food. Despite the treatment, I remained physically active and was even able to climb 3,600 steps of the Tirumala hills and 700 steps at Shravanabelagola without any strain, which kept me motivated and physically strong during this challenging phase.
On the advice of friends, I also tried extracts of soursop leaves for four months and used some herbal medicines for three months (circa 2014-15), though I had no clear understanding of their effectiveness. These were part of my determination to explore every possible avenue to improve my health.
A Breakthrough in Treatment
In April 2015, I experienced a relapse as the cancer had spread to my adrenal glands. A second biopsy revealed that my cancer was driven by the ALK D5F3 mutation, a significant discovery that opened the door to targeted therapy. My oncologist prescribed Crizotinib, an oral targeted therapy, which proved life changing.
Within two days of starting Crizotinib,, my cough subsided, and my energy levels improved. Over the years, I have undergone 10 PET scans, 7 brain MRls, and 6 CT scans, which consistently show no evidence of active cancer. My oncologist now reviews my condition every six months, and I continue with the same medication, as it has kept my primary disease under control.
Overcoming Challenges
While Crizotinib has been a lifesaver, its side effects began surfacing about six years ago. Gradual kidney function decline has led to a serum creatinine level of 1.4 and a glomerular filtration rate of 58. To manage persistent edema, I take a diuretic torasemide (10 mg) on an SOS basis. I also incorporate homeopathic and Ayurvedic remedies for kidney health. I frequently visit my cardiologist and nephrologist to stay on the safe side, keeping them informed about my health and seeking their advice regularly.
In 2020, I faced a severe health crisis during the COVID-19 pandemic, when I was hospitalized three times due to complications from COVID-19 and pneumonia. At one point, I was on ventilation for two days, and the doctors lost hope for my recovery. However, with determination and faith, I survived, though the post-COVID effects like breathlessness and swelling remain challenging.
Additionally, osteoarthritis in my left knee since 2019 has impaired my mobility. I now weigh 86 kg and cannot walk more than a few steps at a time. While knee replacement surgery was suggested, I opted against it due to the associated risks.
Lifestyle and Support
Through this journey, I have maintained a healthy diet, rich in vegetables and wholesome food, stayed active with light exercises and breathing techniques, and upheld a clean and disciplined lifestyle. I have never smoked any forms of tobacco or consumed alcohol at any stage of my life. From a young age, I firmly believed in leading a life free from these habits, understanding their potential harm to health. Despite this, I have occasionally encountered assumptions from others, including medical professionals, that my condition might be linked to smoking. These moments required me to clarify my lifelong commitment to avoiding such substances. I strongly believe that my clean lifestyle has played a key role in supporting my overall well-being and resilience, proving that staying disciplined and mentally strong is just as important as physical health.
My family has been my strongest pillar of support. My wife, who believes my survival is a blessing from God, cares for me with unwavering dedication and compassion. She manages every aspect of our lives tirelessly, ensuring I feel supported and comforted at every step of my journey. Her strength and devotion have been a source of immense motivation for me.
Our only son stays deeply connected to us despite the distance. We talk daily for long hours, sharing memories, updates, and laughter, which keeps us emotionally close. He frequently visits us and ensures I never feel his absence, taking me in a wheelchair to places of interest and making our lives meaningful and joyous. His unwavering love and care bring immeasurable happiness to our lives.
Faith and Community
I attribute my survival to divine blessings, advanced medical research, and a positive mindset. I actively participate in online forums such as ALK Positive WhatsApp groups and the ALK Positive Worldwide group on Facebook, which provide valuable information and emotional support to patients and caregivers. These communities are a lifeline, offering guidance and hope to many like me.
Living with Gratitude
Despite my health challenges, I live a fulfilling life. At 70+, I feel and appear younger, often forgetting that I am a stage 4 lung cancer survivor. My mantra is simple yet profound: Do what is necessary, leave the rest to destiny, and live life one moment at a time.
I am optimistic about the future of cancer research, especially for ALK-positive patients. My hope is that the ongoing advancements will make this disease curable, giving many more patients a chance to live long and meaningful lives.
Message to Fellow Patients
To anyone battling cancer: know that every challenge can be overcome with the right treatment, a strong support system, and a positive attitude. Surround yourself with love and hope, cherish every moment, and trust in the process.
At present, I hold a unique record in India (and possibly the world) as the only known patient surviving with stage 4 lung cancer for over 12 years on a single targeted therapy medication, Crizotinib . My cancer remains metabolically inactive and completely under control with this one TKI (tyrosine kinase inhibitor), with no complications. I hope my journey serves as a source of encouragement, showing that with medical advancements, perseverance and faith, long-term survival is possible even in the face of advanced cancer.
As told to Moyna Sen
