TONAR Posted July 7, 2016 Share Posted July 7, 2016 Hi all, I was diagnosed in March, 2014 with a PSA of 640. Bone and CT scans showed I had metastases everywhere (pelvis, spine, ribs, even one in my skull). After 3 months on Zoladex and Bicalutamide my PSA had dropped to 14 and after a further 3 months it had dropped down to 3. CT scan was clear. But all good things must come to an end and in May this year my PSA started to rise again - it's now at 19. I've just started on Xtandi (Enzalutamide) and have survived the first week. Strangely enough I am relatively pain free and have good quality of life. Can anyone tell me some happy stories about Xtandi? How long is it likely to be effective? Cheers, T. Link to comment Share on other sites More sharing options...
Guest MalcolmT Posted July 7, 2016 Share Posted July 7, 2016 Tonar I was diagnosed with advanced PC in August 2011 and commenced ADT (Lucrin). Like you my cancer is in my bones (spine, ribs, hip, and breast bone). My PSA fell then slowly climbed. In February 2014 I started taking XGEVA injections to harden my bones and in February 2015 I began taking Xtandi. Also, like you I still enjoy a good quality of life and am pain free. By this I mean that any pain that I do experience seems to be from ageing rather than cancer. I have not experienced any side effects from the Xtandi and other ADT drugs apart from the usual ones, hot flushes, loss of strength etc. Insomnia was an issue but I seem to have solved that with sleeping tablets and mindfull meditation. I have never been a fan of meditation but I have found some techniques that work for me. I did not notice any difference when I replaced another drug with Xtandi. How long will Xtandi be effective? I don't know and I really don't worry about it. While i am feeling well I just get on with life as though I do not have cancer. So, there is at least one happy Xtandi story for you. Best wishes Malcolm Link to comment Share on other sites More sharing options...
Paul Edwards Posted July 8, 2016 Share Posted July 8, 2016 Hi Tonar, Thanks for sharing your story. Great to hear that you're getting good results with enzalutamide. Long may it continue. How long is enzalutamide likely to be effective? In the PREVAIL trail the median time to initiation of cytotoxic chemotherapy was 28.0 months in the enzalutamide group versus 10.8 months in the placebo group, a median difference of 17.2 months. It's important to understand that this figure is a median which means that 50% of the people on the trial progressed to chemotherapy before 17.2 months and 50% of the people on the trial progressed to chemotherapy after 17.2 months. For some people enzalutamide may only be effective for a few months. For other people enzalutamide may keep working for years. Statistics are Numbers not People. It's extremely important to make note that statistics of any kind are simply numbers. People vary widely in how they respond to treatments and how long they live with various treatments. Researchers have identified an androgen receptor variant AR-V7. Men who have this variant are likely to develop resistance to enzalutamide (and also abiraterone). For a happy story of someone on enzalutamide, you should watch this video of our Committee Member, Tony Maxwell, who's been on enzalutamide for more than 2 years. Link to comment Share on other sites More sharing options...
tonymax Posted July 9, 2016 Share Posted July 9, 2016 HI Tonar, As Paul says I have been on Enza for 2 years now. Started on it June 2014 with PSA 70 and rapidly rising. Prior to that had been on Lucrin since 2003 after failed prostatectomy. On Enza (plus continuing Lucrin) PSA started dropping and reached 1.6 in April this year. My June result was 2.9. Next result next week - interesting to see if it goes up again or drops. Suspect it may go up. In June 2014 they found the main problem - tumour in right pelvic lymph node. Rest of CT scan and bone scans were clean at that time. Side effects for me were slightly increased fatigue compared to Lucrin alone - manageable. Response to Enza varies substantially person to person. Think I am in the middle or perhaps towards the better end of the spectrum. Good luck and all the best - happy to talk further if desired. Regards Tony Link to comment Share on other sites More sharing options...
TONAR Posted July 13, 2016 Author Share Posted July 13, 2016 Many thanks everyone - and great video Tony. Cheers, Tony Link to comment Share on other sites More sharing options...
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