Hello everyone,
I just wanted to post an update after my latest 6 monthly scan as I know when I first came to these pages following a Stage 4 diagnosis I took encouragement from people who were further along in their journey with this disease.
My journey is now 7 years long, incorporating initial misdiagnosis by my GP (it’s just a mole) followed by surgery, spread to a lymph node, a left neck dissection, radiotherapy, a spread to my lungs, nearly 3 years of targeted therapy (DAB Tram) and then immunotherapy after a recurrence in both lungs early in 2020.
I started combined Ipi & Nivo in March 2020 but had to convert to Nivo only after one infusion because of the unknown risks (at the start of the outbreak) associated with COVID. I managed 3 more Nivo infusions before treatment was stopped due to side effects (mostly gut inflammation), which at the time was terrifying as it was then just a case of what and see.
Fortunately I had a strong response, with the June 20 scan showing that the nodules were shrinking, Sept 20 showing only faint traces remaining in one lung and the other entirely clear. I was then put on 6 monthly surveillance scans, with Feb 21 showing a complete response and each scan since, including the recent one, showing a continued complete response.
I’m by no means at the end of the journey. I recall my consultant saying at the start that 3 years was the reassuring milestone to aim for, and that will be next year, but it’s as good as it can be so far.
So for anyone struggling with the fear and anxiety of recent diagnosis, there is a way through this and many people are responding successfully to the wondrous treatments now available. There are no guarantees but you still have a fighting chance of getting through this, which is a huge change from those who went before us when these treatments weren’t available.
Good luck everyone.
