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Table of Contents
PATIENT/CAREGIVER CORNER
Year : 2021  |  Volume : 4  |  Issue : 4  |  Page : 666-667

The fight is on...until we win


Date of Submission08-Nov-2021
Date of Decision13-Nov-2021
Date of Acceptance19-Nov-2021
Date of Web Publication29-Dec-2021

Correspondence Address:
Tarunima Malik Grover


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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/crst.crst_270_21

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How to cite this article:
Grover TM. The fight is on...until we win. Cancer Res Stat Treat 2021;4:666-7

How to cite this URL:
Grover TM. The fight is on...until we win. Cancer Res Stat Treat [serial online] 2021 [cited 2022 Aug 20];4:666-7. Available from: https://www.crstonline.com/text.asp?2021/4/4/666/334211



The moment that changed our lives was on an unfortunate afternoon of September 18, 2019. I had called up my mother to check on my father who had been complaining of neck pain and stiffness for a couple of days. We went from one physician to another, and we landed up for a magnetic resonance imaging. The scan started, and my mother and I waited for the results. I will never forget that afternoon. Those were the hardest hours of my life. I felt like my heart and brain were racing as the technicians and doctors continued to hustle. Brain tumor it was - a 2 cm brain lesion, suspected to be metastatic. We went numb. I felt a flood of unexplainable energy getting released from my body. A positron emission tomography scan and multiple other tests further confirmed that it was 4th stage lung adenocarcinoma. We were devastated. We spent days thinking what best we could do. We did our research, consulted the best doctors in the country, sent his reports to hospitals in the United States, prayed to God, and did everything in our capacity to get control over this deadly disease that had barged into our lives. My father was physically fine, active, and in good spirits. Just to mention, he had been a health enthusiast all his life, no blood pressure, no diabetes, nothing.

The series of tests began. My father's next-generation sequencing test revealed that his tumor was positive for the programmed death-ligand 1 (PD-L1 80%), which was good news. He was started on immunotherapy (Keytruda) plus pemetrexed and carboplatin. His brain tumor had been successfully removed already. Post six cycles, his scans showed significant improvement. He felt good. He was eating well and was walking almost 10,000 steps a day.

Along with immunotherapy, he also took complementary and alternative medicines (CAM). The CAM protocol helped my father eat the healthiest of foods and supplements. It supported his gut, maintained his immunity, and enhanced his overall well-being.

We came very close to reaching remission at one point, and our oncologist mentioned the magical word “cure.” Yes, we could hope for a cure, but destiny had other plans. This deadly monster was not that easy to get rid of. After a few more cycles of immunotherapy, the lung lesion increased in size. It was thought of as “pseudoprogression,” and immunotherapy was continued, a step I wish we could undo. Post four more cycles, his cancer spread to the spine. Immunotherapy was discontinued. My father was worried about the pain his bones could cause him. We were broken but did not lose hope.

The oncologist recommended chemotherapy. Chemotherapy (gemcitabine plus carboplatin) was started. It did not work much. It kept his disease stable for 3 months and resulted in progression after 3 more months. By then, it was February 2021. He experienced severe pain in the back. We had to get it irradiated. It was a tough period. We decided to go for another biopsy, and his tissue was sent to FoundationOne, USA.

Then came another big blow in April 2021. He caught the novel coronavirus-19 (COVID-19). What worse could have happened at this point? The next line of chemotherapy had to be postponed. Honestly speaking, my father never wanted to go for another round of chemotherapy. He wanted to go for targeted therapy. His biopsy results were out in April 2021. His tumor was positive for the KRAS G12C mutation. There was a targeted therapy drug undergoing testing in trials for patients with the KRAS G12C mutation, called sotorasib. The Food and Drug Association was planning to provide accelerated approval to this drug because of the significant benefits seen in the trial patients with lung cancer. We thought this could be our chance to turn things around. Maybe the delay of chemotherapy was a blessing in disguise, so that we could go for targeted therapy instead. I joined various groups on social media platforms to learn more about sotorasib and its benefits, connected with various patients in trials, did my research, analyzed our options, and consulted with several doctors again.

Although this drug was much needed and our only hope, no trials were available in India. I wrote to the manufacturer/sponsor to help us get access to the drug on a compassionate basis. However, they refused and asked us to travel to one of the trial sites instead. I tweeted many times, highlighting the need for this drug, I wrote an E-mail to the Health Department of India, and to the top leadership of the sponsor company. However, there was no response. I felt helpless. This also brings attention to the unmet need for clinical trials in our country. Meanwhile, I kept in touch with various patient advocates. However, we could not continue to wait endlessly; we had to decide on our next steps. Our oncologist also suggested that sotorasib was what we needed. Tired, worried but not broken, we decided to finally travel to one of the trial sites. We reached out to the sponsor again to check on a suitable location. Through a patient advocate, I discovered that one of the trial sites in the USA had a very well-known and seasoned Indian doctor as the principal investigator. We decided to travel to the US. However, getting a visa amidst the pandemic, regulations, and travel restrictions was next to impossible. We applied for the visa, but to get the earliest slots for appointments, we had to try harder. We reached out to the external affairs minister and dropped multiple emails to the US consulate. Furthermore, I tweeted again to get some attention focused on this serious matter. Finally, we got the visas and could fly.

We were so close to the drug we needed; we were accepted into the trial. After multiple tests and screening procedures, the trial began. Almost after a week of starting the trial, my father started feeling better. We knew we were on the right track. This drug suited a lot of patients, and they were all doing well on it. After 6 weeks, my father had his scans. The drug worked. His lung lesion had regressed. However, the deadly monster showed its colors again. After 6 weeks of improvement, my father started feeling unwell. He developed high fever, headache, and loss of weight and appetite. We were hoping that these were just some side effects. However, after a few weeks, we got his scans done to check what was wrong, and another blow was waiting to hit us. He had a new lesion in his brain, and the disease in the lungs was progressing too. We had to drop out of the trial. This was not a common occurrence. I felt broken. It seemed unreal. We came back to India. It was October 2021 by then. Why did this happen to us? I never got an answer. I am still waiting. Back home in India, my father was getting weaker. We started doing the rounds of visiting the doctors again, and got his brain irradiated.

It is now November 2021. Chemotherapy is starting soon. The same chemotherapy that we escaped once due to the pandemic. But not anymore. We are still waiting for a better targeted treatment. Until then, he will have to continue on chemotherapy. We hope to find another trial or therapy soon. We are doing our research, talking to our oncologist, and most importantly, we have faith in God always.

We may be broken but still hopeful. We never lost hope and strength, and never will. I believe my father will be fine and we will find a treatment that works for him. I wish all the readers good luck. Please keep my father in your prayers.

About the author

I am Tarunima Malik Grover, a Digital Transformation Consultant currently working with a multinational company. I am an Engineer and an MBA. I stay in Delhi. Currently, my only goal is to help my father defeat this deadly disease.

About the patient

Shripal Malik, my father, is a retired Superintending Engineer, highly competent, a health enthusiast, and a kind and humble person. He was well-recognized for playing important roles in executing critical projects in his department. He has been fighting cancer bravely for the past two years and has been the most dedicated patient ever. He has a wife, two kids, and a grandson. He enjoys watching cricket and listening to old Kishore Kumar songs. Wishing and hoping the best for him always.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.






 

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