Liz's story

I was diagnosed in August 2011 with Adenoid Cystic Carcinoma ('ACC') in my left Bronchi. This led to a pneumonectomy of the left lung and radiation to follow. I remained clear until 2016 when I had a met in my left pleural lining which was treated with radiation again until I received the maximum dose of radiotherapy to my chest. At the end of 2017 I noticed that I was having problems eating certain foods and again ACC was back but this time around my Oesophagus and near my trachea. This time round thought there were few treatment options due to the fact that I had received the maximum radiotherapy dose and so it was watch and wait. Unfortunately, it continued to grow and cause issues with my eating and then my breathing so by October 2018 I had to have a PEG fitted to receive enough nutrition to live.

It was suggested I try Lenvatinib. It was applied for on my behalf through the Individual Funding Request ('IFR') and I was warned by my oncologist that it was difficult to get drugs through IFR’s and he turned out to be correct.  I was turned down at the end of 2018. At the same time, it was suggested that we approach the drug company direct for the drug and they did say I could have it on compassionate grounds.

Before starting the drug, I had to have stents fitted in my trachea and oesophagus as there is a risk of fistula’s in the contraindications of Lenvatinib. They were fitted in January 2019 and I started on the drug at the end of February. In the first few days I started on 24mg, which is the ideal dose, but it gave me splitting headaches and sent my blood pressure up. So, I was put on blood pressure tablets and temporarily stopped the drug. A week later I restarted Lenvatinib but on the lower dose of 14mg alongside the blood pressure medication and the headaches did not return. Since then all I have had is a bit of fatigue and a slight change in the taste of a few foods.