I live in Tunbridge Wells and am under the care of the Lung Oncology team at Maidstone and Tunbridge Wells Hospitals. My lung team work with the Neuroendocrine Cancer specialists at Kings College Hospital in London, and my treatment options have been discussed within their MDT.
I have previously written about my diagnosis and initial treatment for Neuroendocrine Cancer UK. So here’s a very brief recap. My symptoms presented with a cough and some spots of blood around 11 years ago. Following various tests, I had a right lobectomy at Guy’s Hospital London in 2016. Three years of clear annual CT scans followed before metastases were discovered in bones, lymph and my liver. A Lanreotide injection every four weeks seemed to keep things at bay for a few years until slight progression led to a referral to the super team at Guy’s for 4 rounds of PRRT in 2022/2023.
Following that, there was still some slight progression in my liver, just involving two tumours. So, in 2025, I commenced Everolimus, an oral, daily tablet.
I had heard various stories about this drug which made me feel nervous so I approached the Helpline at Neuroendocrine Cancer UK to see if they could put me in touch with another patient also taking the drug. I soon had a Zoom call with a lovely gent called Chris. He put me at ease and told me he was taking 5mg and 7.5mg on alternate days, with reasonable tolerance. You would need to be a qualified professional to fully understand how this drug works. It’s an mTOR inhibitor and is described as a targeted therapy and is not chemotherapy. I was to take the drug alongside my four weekly Lanreotide injections. I had read up about the side effects, including mouth sores, skin problems with the feet and hands, fatigue etc.
What I was to discover, is that Everolimus is highly dose specific.
I started with the same dose as Chris, and the initial side effect was a loss of taste of even some highly flavoured foods. For instance, tomato soup didn’t taste anything like tomato soup! Normally a strong flavour, it tasted bland and slightly metallic. This passed after about 5 weeks but then fatigue set in and I began to struggle with uphill walks.
After taking this dose for six months, I decided to discuss this with my Oncology nurse as I had developed a cough.
My consultant, a lung specialist, had already noticed lung inflammation reported on my CT scans and was worried about potential scarring. So we decided to pause the treatment for a couple of weeks and he prescribed a short course of low dose steroids. What a difference that made! My energy levels returned so we decided to resume Everolimus on a lower dose of 5mg a day.
That was 6 months ago and although I still get tired, and slightly out of breath I feel I can take that dose and, even for a 76-year old, still have a reasonable quality of life. The breathlessness has recently increased a little but my Oncologist has asked me to keep an eye on things and get back to his team if the problem gets any worse. There could always be another pause in treatment and another short course of steroids.
But the result, completely stable CT scans and MRI liver scans plus a great set of blood results make it all worthwhile.
So a pattern is emerging, Everolimus seems to work at lower doses but it is important to keep an eye on the trend in side effects, especially if they are affecting your quality of life. Breaks in treatment don’t seem to be too much of a problem but be sure to discuss everything with your care team.
So down here in Tunbridge Wells, I must now get on with writing that angry letter to the newspaper……