Neil Roberts on Trial
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An inspirational journey through recent medical trials - a story from one of our own members. Even as a child, Neil was not attracted to the beach for either swimming or sun bathing. He preferred cricket and tennis. As a secondary school boy he showed talent in both these sports and by this time was wearing long trousers and long sleeved shirts in which to play them. |
Into adulthood he continued to play at competition level but always gave careful attention to the new understanding of potential skin damage from the sun and was a careful user of sun screen and wearer of hats and comprehensive skin covering clothing. He is still a poor swimmer and prefers to stay out of the water.
As part of his due diligence he began to see a dermatologist for regular annual check-ups. They soon began to be 6 monthly, then on a needs basis, because over the last 15 years, it has been found necessary to remove, by freezing or small excision procedures, some 50-60 small basal cell carcinomas and keratoses. However, two required surgical procedures and were the size of a marble from his elbow and a golf ball from his back. In both cases, following surgery, the reports read ‘sufficient removed from the edges to be free’.
Then he felt a lump in his left armpit and after a visit to a breast cancer specialist, a CT scan and a biopsy, it was found to be a basal cell carcinoma. His reaction as these facts unfolded was Wow!! A few more lumps appeared in the armpit and he began learning what was happening to him. Soon he had a team of specialists considering his condition. Their solution was to radiate the area.
His next reaction was one of surprise because after the radiation, a scan showed two tumours in the left side of his lung which were then removed by operation and proved to be also basal cell carcinomas which, as they are skin cancers, are not supposed to metastatise to any other part of the body. They were removed by surgery but two more appeared in his right lung. A further scan showed 2 more advanced cancers and 3 forming with fluid beginning to fill his lungs. He faced a very uncertain future.
Then the dermatologist in the team saw that a trial of a new drug in the USA (a Hedgehog Pathway inhibitor) was being established to treat such basal cell cancers. After meeting the stringent qualification and application criteria, Neil was accepted into the trial that was conducted at the magnificent Stanford Clinic and was comprised of 100 patients, of whom only 4 were metastatic.
He had to travel to Los Angeles every 28 days on 10 occasions to receive his capsules and be reviewed each time. After about 8 weeks into the trial he felt he was getting better. The 4 monthly scan showed that was indeed the case.
A CT scan then showed that he was free of all signs of tumours and the fluid had disappeared. Truly amazing!! He was in total remission.
Early in 2012 the drug, now called Erivedge, was approved by the US Drug Administration and is now on sale for use in the US at a cost of $7,500 per month. Neil, whose drugs up to this stage had been free was saved by Grenentech who have provided him with one years supply free but he has to visit the US every 3 months to get it and to have a review.
But what of the future? After this year it will cost him at lest $100,000 a year and would only be available if prescribed by a US doctor and delivered to a US address. In the meantime he counts himself fortunate to have been on the trial and can enjoy life and even play golf. We are all happy for Neil and salute his courage and his will to face up to and beat a very serious life-threatening condition.