Eleven years and counting – my journey with RCC

I am a 68 year old retired Baptist Minister, currently living in Portchester, a Roman village which is now a suburb of Fareham. I have been sitting as a Justice of the Peace for the last thirty years. Since February 2004, I have been sharing my life with three tumours which have not really been very good for me but which have not really affected me too much for most of the time. It has been a journey that would be familiar to those who know of A.A. Milne’s account of Winnie the Pooh’s escape from the flood using an empty honey jar which he christened “The Brain of Pooh.” As the honey jar and Pooh floated along, sometimes the jar was on top, and sometimes Pooh was on top.
It is a journey which began in mid February 2004 with a pain in my kidney and blood in my urine, which a visit to the doctor deemed insignificant unless it occurred again. Ten days later, it did occur again, this time with clots of blood in my urine. A visit to the GP resulted in a referral to the Haematuria clinic at the Hospital, which was operated every Friday morning on a walk-in basis, and the referral came with the advice to get there as early as possible, and take a good book to read.
The investigations at the Haematuria clinic resulted in my referral to a consultant urologist as the X-ray had revealed a mass in my right kidney. Before I saw the consultant in April, I had the first of many CT scans in March, and learnt to loathe the two litres of barium which had to be drunk before the scan. The consultant was almost certain that the mass was renal cell carcinoma, and advised that he should remove the right kidney. He pointed out that the operation would take about seven hours, and so he tended to do only one a week, and as I was seventh on the list, I could expect an operation in early June.
I went into hospital on June 7th, 2004 and had my operation the following morning. After two attempts to find space for an epidural the anaesthetist admitted defeat, and so I have a ten inch “shark-bite” scar going diagonally downwards across the right side of my stomach. The consultant surgeon removed the tumour, and because of its size, had to send it away to be analysed and measured. It weighed 1005 grams and measured 11.3 x 8.2 x 7.5 cm. It was graded as Grade 1 on the Fuhrman Grading System and was Stage T3a on the TNM system.
I left hospital on Saturday 12th June, and over the following four weeks was surprised that the aisles in the local Supermarkets, beyond the café, seemed to have taken on a significant uphill gradient. I decided that the best plan was to stay in the café whilst my wife did the shopping. However, the consultant was as good as his word, and I was able to officiate at the marriage of my younger son and his bride on 30th July. It was nerveracking service for the family, because having still got the after-effects of seven hours of anaesthetic in my system, my emotions were all over the place.
For the following three years, the regime of alternating CT scan and ultrasound continued. For the first year it was three monthly, then six monthly in year two, and annually in year three. It was the annual scan in year three which showed a tumour in the renal bed of 4.6 cm. Unfortunately for me, my consultant had allowed a visiting Egyptian urologist to take his clinics for July, and when I first saw him, his level of English together with his accent made him very difficult to understand. By the second visit, a few weeks later, after my scans had been reviewed by the multi-disciplinary team, he was more confident, but I still passed up the offered opportunity to ask questions because I was not sure I would understand the answer. He referred me to the oncologist.
My appointment was for 30 August 2007, and was with the Registrar, but she had been instructed that I was to meet the consultant before I left the department. At the time, she explained that the only treatment was interferon, administered in hospital by injection, and this was about 50% successful. Much of the consultant’s time seemed to be occupied drafting appeals for patients to be allowed Sunitinib, which was licensed but not approved by NICE and so had to be appealed on a case by case basis. However, bearing in mind the fact that this tumour, and another which was close to the skin on the left tummy wall, had appeared sometime between the CT scan at the end of the second year, and the one at the end of the third year, the consultant decided that she wanted a further scan to see if there had been any growth in the three months since the last scan.
It was around this time that, based on the advice of my GP, I sought early retirement from work on health grounds, and retired on 9th July 2008. As we lived in housing that was linked to my job, retirement meant a move, and the charity which provides housing for retired Baptist ministers housed us in Bournemouth.
There was no perceptible change until February 2009, when my appointment was the day after the announcement that Sunitinib had been approved by NICE. The scan showed that there had been some growth, and so began the application for funding to be resolved by my next appointment in a month’s time. It transpired in March that no decision had been made and so my appointment was delayed until the end of the month. We had chosen a GP surgery over the border in Dorset, even though we lived in Bournemouth. This had meant that the discussion over who was to pick up the bill for treatment had stalled. A phone call to PALS in Bournemouth resolved the issue within hours, and five hours after my initial phone call, agreement to pay for the treatment had been faxed by the Dorset Health District to the Queen Alexandra Hospital. So I began my first cycle of treatment with Sunitinib on 31st March 2009.
The first cycle of Sunitinib was rigorously monitored, with check-ups every two weeks. During the second cycle, as it was our Ruby Wedding Anniversary, we went on a cruise to the Norwegian Fjords. When we got back home, I needed a haircut, and left my wife in the car whilst I went to the barbers. She was shocked to see that my hair had changed colour to “sutent silver” during the time I had been in the barbers. One of the results of the cyclic treatment regime of Sunitinib – twenty eight days of taking the tablets followed by fourteen days break – meant that you were never quite sure which side-effect you were going to get on the next cycle. For one cycle it might be hoarseness, the next a sore mouth, the next diarrhoea, and the next sore hands and feet, also known as palmer-plantar syndrome. This last one was for me the most debilitating. Even when treated with Udderly Smooth Intensive Foot Cream (best price I found was from Wiggle.co.uk) the soles of my feet became so sore that I could barely put them to the ground, and this would continue for several days or even weeks until the treatment stopped. I found that MBT shoes helped, and also latterly my consultant prescribed Pyrodoxine which relieved the pain and so made movement a lot more comfortable. An unseen and unreported side-effect was a grumpy mood. This tended to be unseen by the medics because it came with the treatment, and after the first cycle, they tend to see their patients only at the beginning of the new cycle, after the fourteen day break. My consultant also tells me that only recently has she become aware of wives complaining about their husbands exhibiting Victor Meldrew like tendencies, but it could be that this is down to the treatment regime on the second phase of TKIs is continuous, so she actually sees the patient whilst they are taking the tablets.
After 34 cycles of Sunitinib, with a few short breaks to allow various toxicity reactions to calm down, the scan in June 2013 showed that the Sunitinib was no longer working. I stopped taking the drug in July, and after a three week break began taking Everolimus in early August. Everolimus was chosen because it worked in a different way to Axitinib, which is a TKI. One of the side effects of Everolimus is diabetes mellitus, and in October, after a frosty diabetic examination by the practice nurse, which led to me asking for a second opinion, I found myself in the Diabetic department of the hospital, and beginning treatment with Humulin I injections. I began at ten units daily, and as the toxicity built up, so did the sugar levels, until by the time I stopped taking Everolimus the following April, I was up to sixty units a day and rising. However, a suspected pulmonary embolism, which I woke up with the day after my penultimate consultant appointment whilst I was on Everolimus, and which had all but vanished by the time I saw the GP, together with a CT scan which showed that the treatment was no longer effective meant that I was taken off Everolimus at the end of April 2014.
The next and last treatment was Axitinib, a TKI, from the same stable as Sunitinib, with many similar side effects, but with continuous tablets, taken morning and evening throughout the cycle. I was warned that this was the last option for treatment, but as I had been told that about Sunitinib some five years before, I was not too concerned. I began on the 5mg twice a day dose. As the cycles went by, the toxicity grew, and whilst the first cycle in May was almost side effect free, the diarrhoea began in the second cycle and by the sixth cycle had become chronic, with the resulting weight loss – I had shed over three stone (nineteen kilos). At this visit at the end of October, the CT scan results had been delayed, and so I was given a week off treatment to await the results.
During that week, I woke on the Friday morning to four ambulance men in my bedroom, and I learnt that low blood sugar and low blood pressure created the perfect storm, otherwise known as hypoglycaemia. The following morning, I woke and discovered that it had happened again, and this time it was a trip to hospital in the paramedic’s car, where I was discharged after three hours. At my appointment on the Tuesday the consultant wanted to know what I had been up to as the results from the weekend bloods had reached her before I did, and they showed a creatinine level about twice as much as it should be, however the CT scan showed unchanged tumours at 31mm and 39mm. We were sent off for another blood test, lunch, and a warning that if the creatinine levels were not lower, I would not be coming home until I was rehydrated. The levels had dropped, and so I was given a further fortnight off treatment to recover.
At that appointment on 25th November, the discussion centred around when to begin the reduced dose of 3mg twice daily. My wife made the comment that after Christmas would be nice, and the consultant was quite prepared to consider this, as I had been on biotherapy for nearly six years. It was agreed that I should begin taking the new reduced dose on 31st December, and go back for my next tablets of 23rd January.
And so the treatment goes on …. and on.
The frightening part is calculating the cost of the medication if I had had to pay for it. The drugs alone, without the cost of consultant appointments, and CT scans, or the initial surgery and diagnosis, have so far cost more than £154,500. So I think I have had my money’s worth from the NHS!