Oct 24, 2012 - 10:44 pm
I have recently commenced the SORCE clinical trial to test Sorafenib V's placebo in non-met RCC patients to prevent recurrence.
Following radical nephrectomy I was categorised as high risk for recurrence and was offered placement in the 3 year SORCE clinical trial. I have read some interesting views on trial participation, with some people preferring to stay away from drugs unless they are 'absolutely necessary'. I am 32 and have a 13 year old daughter whom I am very close to. While I am not in a position where drug treatment may be said to be 'necessary' to preserve life - participation for me was a no brainer. The only available treatment for patients like me, that might help medical science and other patients, for free... yes please!
So here we are 5 weeks on... it has been a bumpy ride. Treatment was interrupted after just two weeks for grade 3 skin toxicity and high BP. Definitely on the active drug. Following one week off and another two weeks on, I am again experiencing some nasty skin complaints, nausea, fatigue, eyelashes are falling out, loss of appetite and general irritability. I am juggling treatment with parenting, work, uni and my only savior - exercise - has been reduced to a weekly yoga/barre class. I am feeling withdrawn and emotional - but I am persisting with treatment in the hope that my body will adjust if I can just stick with the program. I hope. I acknowledge the importance of quality of life - but I am so scared of not being around for my daughter that I will persevere. Also with the knowledge that there is no known treatment for high risk patients makes me desperately want to help in the quest of discovery.
If anyone is interested in the use Sorafenib/Nexavar, I will be happy to update as my journey unfolds.