13th January 2026 I found out I was ROS1 positive. A bit of a journey before this…I started with some breathlessness, persistent cough and back pain back in October 2025, back and forth a couple of times to the GP until I ended up attending A&E in December due to symptoms worsening, I was admitted for a suspected chest infection.
6th December 2025 – the day I was told I had suspected lung cancer and that it was also in my liver and bones after an X-Ray & CT scan. Our world just turned upside down in an instant, our daughter was 6 weeks old. From that day I had to wait 2 weeks for the respiratory referral to have the initial consultation with a respiratory consultant. At this point we felt like we had a lot of information but it also very little and it felt an impossible situation to navigate.
17th December 2025 9am is when everything got started – initial appointment, blood test for liquid biopsies, lung bronchoscopy that afternoon for biopsies then the wait for the results…over the Christmas period.
31st December 2025…got the diagnosis of NSCLC, with this confirmation the oncology referral was done – another 2 week wait. Still waiting for the biomarker test results to come back. At this appointment a repeat X-Ray was done due to worsening breathlessness. Fluid in my lung cavity had doubled since the initial scan due to the cancer cells. A week long hospital admission was arranged for a chest drain and pleurodesis – 3 litres of fluid drained off my right hand side but both successful procedures. During this admission brain MRI was completed – no mets to brain.
Initial oncology appointment confirmed the biomarker result as ROS1 positive and treatment of Entrectinib 600mg was advised due to risk of mets to brain.
22nd January 2025 – started Entrectinib.
Side effects – where to start….lets be honest initiating on Entrectinib is horrendous. The TKI hitting the body over the first 4 weeks was a shock to the system. Side effects changed as the initial 4 weeks progressed. From muscular pains in the arms and legs that at night felt like electric shocks all down my arms, keeping me away for several weeks. This sensation all went into my feet and then disappeared bizarrely one night and never returned. A feeling of sunburn all over the body! Unable to touch my skin for days. It’s sort of still there if I think about it but you adapt and learn to not think about it. Changes in taste. Everything tasted like metal, burnt and salty. This goes too. With this medication it enters your brain. Dizziness, vertigo, drowsiness and the only way to describe it as unable to process like I once did. Mixing up words, slurring. Again one day it’s just gone. Feeling of paranoid idea’s…that people were looking at me& talking about me. Again gone one day and hasn’t returned. Constipation that went with diet changes. Currently at 4 months in…constant hunger and weight gain as a result but this is now under control. Also some weakness to right hand side and numbness in right finger consistently now for last few weeks.
From an affect point of view the future feels so uncertain and I focus on the here and now, my soon to be wife and little daughter. The focus to do everything I can so she will grow up and remember me! To have happy times and make memories while able.
3 month CT scan has shown really positive results – lung tumour has reduced by over 50% down from 4.2cm to 1.8cm, positively responding in liver and bones too.
The ROS1 groups / website have been and continue to be so helpful for us through this journey to find a community and read positive stories but also to talk to others / ask questions / support each other.
We read an article from an oncologist also diagnosed with lung cancer himself who does a ‘3 month challenge’ in between scans to document anything achieved / positive experiences rather than living scan to scan. In my first 3 months I went back to work full time managing hospitals, went back in the gym & running, bought a new car, found a wedding venue, had lots of firsts with our baby (sensory class, swimming, aquarium, Easter), fed Gentoo penguins, had a break at Center Parcs & a spa hotel. Now onto the next 3 months of life.
