Year : 2020 | Volume
: 3 | Issue : 1 | Page : 62--63
Beating Stage IV and going strong – My father's journey
X2, Lane1, CBD Belapur, Navi Mumbai 400 614, Maharashtra, India
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Dongre J. Beating Stage IV and going strong – My father's journey.Cancer Res Stat Treat 2020;3:62-63
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Dongre J. Beating Stage IV and going strong – My father's journey. Cancer Res Stat Treat [serial online] 2020 [cited 2022 May 28 ];3:62-63
Available from: https://www.crstonline.com/text.asp?2020/3/1/62/279075
It was a regular day for me in the USA where I've lived for the last 10 years. Staying away from family in India is never easy, but with the help of the latest technology, the distance isn't as it used to be. We got on an evening call with my parents to catch up, but little did we know that this call was going to change our lives forever, yes, my father was diagnosed with cancer. Given the taboo of this word, it was enough to send shivers down my body that something bad is going to happen in my family and I didn't have any control over it. There were more questions than answers, what caused it when my father was a non-smoker and non-drinker? How can a healthy man like him who hasn't had any history of illness get something like cancer? Is it hereditary, wait but there hasn't been any history in our family either? WHY US? WHY HIM?
My father didn't have any major symptoms of being ill except some uneasiness and burning sensation in the armpit. Being in the biological field himself, he did make sure to get it checked. Being a retired scientist from Bhabha Atomic Research Center (BARC), that was his first stop. BARC hospital recommended getting a biopsy and positron emission tomography-computed tomography (PET-CT) done and sure enough they found a lump which was malignant. To make it worse, it had metastasized. He was diagnosed with Stage IV adenocarcinoma with primary in the lung and metastasis in the brain and axillary lymph nodes. And, our journey to fight cancer began.
It's been 4 years since he has been fighting cancer and still going strong. Life has changed a lot and stigma around cancer continues to haunt our families every day. However, staying positive throughout this battle has been key and it's been possible with support from some of the country's best oncologists at Tata Memorial Hospital (TMH): Dr. Vanita Noronha and Dr. Kumar Prabhash, with the help of Dr. Sucheta More, and Dr. Supriya Goud.
Doctors at the BARC advised us to go through further consultation and treatment at one of the best hospitals in the country, TMH. As we came into the TMH for the first time, I realized the wide spread of cancer and the plight of many who travel from all around the country for treatment without having any base in Mumbai. From young kids to senior citizens, cancer has spared none. It was disheartening to see people taking shelter on sidewalks to prioritize high cost of treatment over simple accommodation in Mumbai. We went to the Homi Bhabha building, and it was a simple process to get started. We went to thoracic medical oncology and till date are fortunate enough to have met Dr. Sucheta. It was sad to see my father's file getting shoved into the heaps of files doctors have to manage on a daily basis. With a continuous flow of patients to get consultation, it took hours of waiting. Waiting at TMH is all about patience; staring at lights and walls with lot of people-watching, not the pleasant one given everyone's condition due to weakness with disease, tiredness from travel and wait, hunger due to fasting restrictions, kids on laps, elders sleeping on benches, constant traffic of wheelchairs, and endless hopes to live. When our turn came, Dr. Sucheta took time to look at our case, consult with Dr. Kumar Prabhash (senior oncologist), and decide the line of treatment.
After looking at the reports of biopsy, PET-CT, and brain magnetic resonance imaging, the doctors decided to go ahead with whole-brain radiation (WBR) and do a CT-guided lung biopsy. WBR made him lose all his hair, get very weak, and made the struggle of cancer treatment real. More than the disease itself, the treatment had started taking a toll on him and was making him lose all hope. It was a very difficult time for our family to stay strong and hold it all together. Even though tears were not showing up, everyone was crying inside yet keeping up the hopes. While going through the CT-guided lung biopsy, he had to suffer and live through immense pain which was unbearable. Without any anesthesia, he felt all movements and pain from needles poking through his body.
As my father had no history of smoking, the doctors recommended testing for epidermal growth factor receptor (EGFR) mutation. Results of this test were going to decide the first line of treatment. We waited for results anxiously, not knowing what to expect next. Dr. Sucheta mentioned about results being positive and it opened up a whole new ray of hope. With the latest breakthroughs in understanding cancer and up-to-date knowledge of TMH doctors, my father was put on a targeted therapy (also referred as oral chemo). Targeted therapy is supposed to be less toxic on the body which results in less side effects as compared to traditional chemotherapy. Not knowing the duration of treatment, one of the doctors mentioned, “There's no cure for cancer. We can only manage the disease. Think about it as a chronic disease like blood pressure and we continue medicines until it doesn't work.” We were ready to battle it out and for as long as needed.
So, he started tablets, once-a-day gefitinib 250 mg, along with some recommended changes to his diet. After 2 months of gefitinib, it was time for the CT scan to monitor the effect. We all felt like school kids waiting for grades, angst was high, and so were our hopes. Indeed, it had worked! Results from the first CT scan showed significant regression in the lesion, and we were ecstatic to hear that. With a routine CT scan every 2 months, the doctors were closely monitoring the efficacy of this drug. We continued gefitinib for 2.5 years with side effects which included skin rashes, weakness, nail swelling, nausea, and constipation. These side effects were manageable as compared to traditional chemotherapy. However, the immunity was so low that once we went out to the mall and he caught bad cold and fever. Treatment had a significant impact on his social life: no outings, no outside food, no travel, no movies, or malls. He started avoiding meetups and social gatherings and started stepping back from being connected with his friends and relatives. He turned down all travel opportunities with family and friends and couldn't even explain the true reason which distanced him from his social circle.
We dreaded the 2-month follow-ups as they were filled with 3–4 days of travel, wait, and angst. Being senior citizens, travel and managing all day outside was tough for my parents. To make it worse, things wouldn't get done on certain days, and we had to make another trip just because doctors' got pulled into meetings or pharmacy closed by the time we were done with doctors' consultation. We got into a routine of tests, results, wait, and consultation with doctors. One thing that helped us through all this was, a cup of coffee in the cafeteria (one of the best coffees). As routine scans showed disease being stable, he gained confidence and got back into his habit of walking 5 km daily. Also, during this time, he successfully took a trip to the USA and got a nice break from home and routine. Things were looking stable until…
Staying Strong and Positive
After 2.5 years, the drug stopped working and cancer showed signs of progression. Doctors were swift to take action and recommended tests to confirm progression. After reviewing the test results, they decided to change the drug. What came along with progression were also other complications such as bone pain, episodes of seizure, axillary lymph node lesion, and shortness of breath, to name a few. The TMH has a strong network of doctors, all under one roof, which helped with quick diagnosis and fast decision-making to make any necessary changes in the treatment. Over time, we met with medical oncologists, surgeons, radiation specialists, and lab specialists to tackle each complication and decide further treatment. We are still going through regular follow-ups and beating cancer every day growing stronger each day and staying positive.
As quoted by Stuart Scott (American sportscaster and anchor):
You beat cancer by how you live, why you live and in the manner in which you live.
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Conflicts of interest
There are no conflicts of interest.