Tony was initially told his lung cancer was caught early. However, a few months down the line and he received the devastating news that it had spread. He was then told he had 3-6 months to live. That was over four years ago in 2015…
I was diagnosed with lung cancer in March 2015. I started with a rather annoying little tickly cough so I went along to see my doctor. They sent me for a chest x-ray which confirmed that I had a shadow on my lung. That’s when the journey started.
When I was first diagnosed, I was ruled out for surgery because the cancer had spread from my lung to a lymph node in my cheat. However, I had a really good lung health consultant who believed surgery was possible. He said to me ‘We’re going for cure on this, not treatment’.
He convinced the surgeons to do a procedure called a mediastinoscopy, which is basically looking inside the chest cavity with a camera to see if they could find any other areas of infection.
They did that and it came back clear, so they then agreed to do the surgery. I had an upper, right lobectomy in May 2015, then followed by a course of chemotherapy which was to mop up any rogue cells.
Worse than we thought
Unfortunately, I started to display some symptoms in October of the same year. Following investigation, it turned out to be that I’d developed three mets, one in each kidney and one in the brain.
At this point, I was told the treatment was going to be palliative and I would probably only survive for about 3-6 months.
Fortunately, they still had the tumour they had removed and tested it for mutations. It came back to say I was EGFR+ and there were targeted treatments for that particular mutation.
I started on a drug called afatinib in November 2015. By January, the brain tumour had reduced by 53% and the kidney tumours by 47%.
The afatinib, unfortunately, has a limited span of controlling the disease and it stopped working for me in early 2018. I was then tested for the follow on mutation from EGFR+, which is T790. I tested positive for that which meant there was another drug available to me and that’s osimertinib.
The latest scan suggested it was working effectively and the brain tumour had shrunk from 17mm to 7mm, which for me is brilliant news.
Coping with side effects
The chemotherapy was brutal. It left me absolutely, totally exhausted. If I had to walk upstairs for anything, I would have to stay and have a rest before I could come back down. It took me 2-3 months to get back to some reasonable form of fitness.
I then started on the afatinib which has a massive range of side effects. One of them being severe diarrhoea, which I learned to control. I also experienced stomach upsets, skin rashes, splits to nails and finger ends. Life becomes a whole new normal of having to deal with all the side effects.
Osimertinib has very similar to the afatinib with some of the similar side effects, like the diarrhoea, the upset stomachs, the side rashes. However, they don’t seem to be as severe with me and I think that I’m coping much better with the osimertinib.
I did feel reasonably unwell for the first few weeks. I had dizzy spells and had quite like I had the flu. I don’t know if that’s the osimertinib, or if it was just my body getting used to it but it seems to have gone now and I’m coping with it really well.
Living with lung cancer
Life, for me at the moment, is quite good actually. I would say I’m doing as much now as I would have expected to have been doing if I hadn’t got this disease! I love gardening and I can still do that. I can still turn my hand to DIY too. I actually fitted two large decks in the garden during treatment!
I was also able to walk my beautiful daughter down the aisle.
She got engaged on her 30th birthday in New York. They were looking to get married in Italy in September 2018. My first thoughts were ‘I really think she needs to rethink this because I’m not quite sure if I’m going to be around in September 2018‘.
One evening, after one or two too many red wines, I told her I would do everything I could to be there.
And I did. I walked her down the aisle in Italy. When we got to the bottom, my now son-in-law gave me a hug and said ‘You were true to your word’.”
Tony shared his story as part of our Follow my Lead campaign for Lung Cancer Awareness Month 2019. Follow my Lead aims to improve conversations around lung cancer and help those affected to address and deal with a diagnosis.