Apr 29, 2013 - 11:22 am
I am writing from the UK - my older brother was diagnosed with kidney cancer in September 2010 aged 55. He was told it was contained and that no treatment should be necessary once his kidney was removed. On that basis his surgery was delayed twice and he was not operated on until January 2011. We will never know if that delay was significant and there is no point in looking back, only forward, but by the time his kidney was removed it was obvious it had not been contained albeit scans immediately after showed no signs of the cancer having spread. His surgeon was clearly so concerned at the size and aggression of the tumour that she referred him to a specialist consultant in one of the best hospitals in London. He was put on a clinical trial for sutent (we think he had the placebo as when they scanned him in October 2011 several nodules had appeared on both lungs, it was not looking good at that stage).
As my brother was on a clinical trial he was then automatically switched over to the sutent in November 2011, at the three month scan all of the nodules had reduced significantly, these reductions continued at each scan. He was on a very high dose and suffered quite severe side effects in weeks three and four of the cycle. However, he still did all the normal things and continued going to the gym (every morning!) and to work. He remained very positive and led life to the full. However, his consultant decided that after a year of being on the high dose, the side effects were quite extreme and that the dosage should be reduced. At his scan earlier this year the nodules had changed and enlarged, the consultant said the changes were "miniscule" and a non expert might not even have noticed the changes. He put him back up on the higher dosage of sutent and scanned him again after one month, he was told today that there had been more changes to the nodules, very small again but nevertheless the consultant believed the sutent had now stopped being effective.
His consultant is going to now start him on Everolimus and I just wondered if anyone had any experience of how effective it is, the side effects and the average time it is likely to keep things under control before he is likely to need to move on to the next drug, which we understand is likely to be Axintinib. The consultant seems very positive about things, even with this set back. Scans show that it is still confined to the nodules in the lungs and there has been no further spread. He is still going to the gym every day, working and generally living life to the full - you would never know he is living with cancer, he is just so positive, although his hair and eybrows did turn white!
This is the first time I have ever used a forum like this, so I do hope I have posted it in the right placen having randomly posted it somewhere else first?!