I was a fitness freak so one day in the year 2018, I suffered injury at the gym due to which a terrible back pain started coupled with sciatica pain. The doctors advised MRI scans. They could see nothing wrong with my legs or any other part of the body But they spotted something nasty in my lungs. Further scans & tests revealed that it was adenocarcinoma- type of lung cancer. It was localised so they performed lobectomy (removal of lung lobe) on one of my right lung lobes in early 2019. All yearly scans after lobectomy were great till 2022.
In the year 2023 CT scan, it showed swollen lymph nodes & multiple nodules in my left lung. After a biopsy was performed in the lymph nodes, it was confirmed to be Bronchogenic Carcinoma which was spreading from the left lung. The cancer had indeed come back with a vengeance. It was stage 4 lung cancer now.
With tests they found out about ROS1 fusion. I was prescribed Entrectinib which worked wonders for my cancer. I achieved NED (No evidence of disease on scans) status within 4 months of taking Entrectinib. However, I had to deal with multiple side effects like breast mastitis, sinusitis, recurrent fever for no apparent reason, edema and now neuroarthropathy.
I also realised how lonely it could be with cancer. And it could be worse with a rare type of cancer where the treatment options are limited.
In late 2024, I took up the responsibility to lead the ROS1 cancer group in the UK. I thought this was my calling. Since, 2020 I have anyways made a mission of my life to help other ROS1+ cancer patients & carers by offering support, advocating for ROS1+ cancer, creating a pressure group to get more treatment options in the UK geography.
