I now have a £100 a day drug habit. Fortunately I don’t have to mug pensioners to sustain it. On Tuesday I had confirmation that I was accepted on the everolimus trial. When I heard the news I danced around the office with Soni (my wonderful assistant) and then spent the next few days feeling weak, almost numb, with relief. Robin drove me down to The Christie on Thursday. The trip was ten times easier as a passenger, humming along to CDs, compared to travelling by train. A few days before we had enjoyed the joke of Steve Coogan and Rob Bryden listening to Joy Division as they cruised through the North of England in the TV comedy The Trip but we settled for some Muse, Kasabian and Primal Scream to accompany our Northern road trip (a 9 hour return journey).
I’m going to try to keep to the original intention of this blog, to provide information for anyone else affected by rcc, and document my experience of everolimus (brand name Afinitor) as thoroughly as possible. First, a clarification – a surprising amount of acquaintances whom I won’t name and shame (mum, Soni, Paul you know who you are!), aware that the clinical trial involves a fortnightly trip, thought it meant I headed down south to take one tablet once every two weeks, presumably a pretty big one! In fact, as you can see, the pills are pretty tiny.
The trial consists of 10mg of everolimus each day. I am given a small stash to take home. I take two 5mg tablets once a day, at the same time each day. As I am travelling from Scotland the drug company requested that I take the first dose in the hospital and then hung around for a while in case there were any immediate adverse reactions. You have to take the drug on an empty stomach and completely avoid grapefruits, Seville oranges, star fruit and their juices.
There is a risk of non-infectious pneumonitis, which can be fatal, and there is a heightened risk of infections so I have to keep a careful eye on that and alert Kerry, the Clinical Research Nurse, to any side effects, no matter how trivial I assume them to be, such as a sore throat or cough. I am now tethered to a rigid schedule of fortnightly appointments – I will travel to Manchester to update on how I feel and to have blood tests/blood pressure monitored. I will have a scan every eight weeks.
During Thursday’s appointment Professor Hawkins skimmed over the results of the previous week’s screening tests. The tumours in the abdomen had grown (one is now over 3cm) but not too significantly. There is a nodule in my left lung but he doesn’t think that it is a cause for alarm. Apparently the growth in the tumours accounts for the increased pain and discomfort I have felt. It was all pretty straightforward stuff.
There was a lot going on in the previous week. I had vaccinations for penumonia and flu and Lorraine, a Macmillan nurse from St Columba’s Hospice, came to our home to talk to Robin and I. She subsequently helped to resolve the frustrations I had with the local GP surgery and I will now mainly see two doctors who will be familiar with my medical history. In fact, I saw Dr Fergusson on Friday morning and, after discussion with him, accepted that I am currently too exhausted to work so am signed off work for a week to try to recuperate. He has advised me to look into speaking with a counsellor, explore complementary therapies and spend more time with family and friends.
We fulfilled part of that prescription on Friday evening when we visited my family for a few hours and had a great meal and a lovely time. My parents are about to go on to Gran Canaria for a week with my aunt and uncle. I’m thrilled that they are getting away, and they desperately need the break, but the reason they are going is that my mother’s Herceptin treatment for breast cancer has been vetoed following disappointing results from a heart scan. She has coped extraordinarily well with surgery, chemo and a rigorous round of radiotherapy (which has left her with devastating burns across her shoulder), thanks hugely to my father’s faultless care and attention. I am just agonised that she cannot continue with the Herceptin preventative treatment and the hope which it represents.
It brings it home to me all the more how fortunate I am to get on the RAPTOR trial. This drug offers no guarantees and no hope of anything other than some time and respite from an inevitable onslaught but I cannot even contemplate what I would have faced if I was refused. That is the bleak situation which many other patients do face, especially in Scotland, where there is no recourse to the UK government’s much publicised Interim Cancer Drugs Fund. Having had a very firm focus on my own outcome I will now look into fund-raising for others in this situation. Self-funding patients have to find £3,000 a month for this treatment (ergo my £100 a day estimation).
For now I want to focus on recouping some strength. This is Day 4 of the everolimus and I am already showing symptoms of stomatitis which is unpleasant but not debilitating. I am however exceptionally fatigued. I have no idea if this is connected to the drug or to the fact that I’ve had little rest of late (although Robin has ensured I put my feet up and do nothing other than boss him about while I am at home!) and have felt increasingly stressed about the future, about ‘keeping all the balls in the air.’ So, I’m to have a week of chillin’. I need to learn how to relax and de-stress and that could be my biggest challenge to date. The Rankins dropped by on Saturday and a few hours of some laughs with Simon, Charlene and Josh and much goggling at the utterly adorable four month old Marlie helped to set me on the right path.
NB: Due to ongoing confusion I am going to reverse my previous policy on publishing comments which are posted to the site. From now on I am going to approve them UNLESS you mark them as private, which I will respect. Obviously if you email me via my private email I will never post them here!