TONAR Posted February 28, 2017 Share Posted February 28, 2017 Hi, I've only been on Xtandi for 7 months. After my PSA initially dropped from 19 to 4.5, it has now risen again to 8.7. Is it possible that Xtandi has become ineffective in such a short time, or could it be a random fluctuation in PSA measurement? My blood tests are at 6-weekly intervals. Thanks, Tony Link to comment Share on other sites More sharing options...
tonymax Posted February 28, 2017 Share Posted February 28, 2017 Tony, I have been on Xtandi for 33 months. My PSA has dropped from 69 to 1 and seems to be holding at that at the moment. I am on a clinical trial where everyone gets Xtandi in the first stage - we get PSA checks monthly. I have had several upward blips (maybe + 10% max in a month then further drops following month) in my general downward PSA trend. Based on my waiting room thumbnail surveys I am at the luckier end of the spectrum. Many guys have had much shorter benefit and your results may not be uncommon. In fact some guys got little benefit at all. Is your rise from 4.5 to 8.7 in one six week period or several? Suggest you discuss further with your doctor - he should have a much better idea than myself. Tony Maxwell Link to comment Share on other sites More sharing options...
TONAR Posted February 28, 2017 Author Share Posted February 28, 2017 Thanks Tony, The rise from 4.5 to 8.7 was over one 6-weekly interval. Oncologist wants to wait on next 6-weekly test before pressing panic button. But it doesn't look good. Cheers, Tony Link to comment Share on other sites More sharing options...
tonymax Posted February 28, 2017 Share Posted February 28, 2017 Tony, Sure the size of the rise is bigger than one would hope. However waiting for the next result is very sensible. You dont want to change course based on an unusual blip. All the best Tony M Link to comment Share on other sites More sharing options...
curro Posted February 28, 2017 Share Posted February 28, 2017 26 minutes ago, TONAR said: Hi, I've only been on Xtandi for 7 months. After my PSA initially dropped from 19 to 4.5, it has now risen again to 8.7. Is it possible that Xtandi has become ineffective in such a short time, or could it be a random fluctuation in PSA measurement? My blood tests are at 6-weekly intervals. Thanks, Tony I got 13mths out of Xtandi which doctors told me was amazing for mount of disease i hav but hav heard of it only lasting 4mths ... Link to comment Share on other sites More sharing options...
prestonn Posted February 28, 2017 Share Posted February 28, 2017 Posted for Noel Preston: Dear Tony Re xtandi. I was on this drug for about 12 months (7/15 to 5/16) starting with a PSA of 30. It dropped to 18 but about 6 months after that it started to double quickly. So then I moved to Taxotere for 8 cycles which so far has kept a lid on the PSA. Every experience is different but I incline to the view that xtandi is helpful but probably not a magic bullet. Noel Preston Link to comment Share on other sites More sharing options...
TONAR Posted February 28, 2017 Author Share Posted February 28, 2017 Many thanks Noel. Cheers, Tony Link to comment Share on other sites More sharing options...
Barree Posted February 28, 2017 Share Posted February 28, 2017 Hi Tony, Are you concurrently receiving ADT as well as Xtandi ? I was on one of the very early clinical trials of Xtandi. I managed to get a total of 4 years and 3 months before Xtandi began to fail - but I was simultaneously receiving Zolodex as well. In view of the circumstance, I feel what your oncologist and Tony M have said is worthy of consideration - wait for the next result - You certainly wouldn't want to contemplate changing anything at this stage, based on what might just be an unusual blip . Cheers, Barree Link to comment Share on other sites More sharing options...
TONAR Posted February 28, 2017 Author Share Posted February 28, 2017 Thanks Barree, Yes, I'm on Zolodex as well. That's wonderful that you received so much benefit from Xtandi. Maybe my PSA reading is just a "blip". I hope so. Cheers, Tony Link to comment Share on other sites More sharing options...
alanbarlee Posted March 1, 2017 Share Posted March 1, 2017 G'day Tony, A bit more background might help us to understand your situation a little better. Can you share your original Gleason score, what LHRH agonist you're using in conjunction with Xtandi (i.e. Lucrin, Zolodex etc....), what imaging results you've had and when, whether you've had chemo (Taxotere) - and if not, the basis for your medonc offering you prechemo Xtandi? Having these things clear will also help you to better focus on treatment options to be discussed during your next medonc conversation. Keep in mind that there will be a large national lutetium-PSMA clinical trial launching during 2017. This has achieved great results with many participants during preliminary studies in Germany and here. You may want to cover off on that option with your medonc. Best wishes, Alan Link to comment Share on other sites More sharing options...
TONAR Posted March 1, 2017 Author Share Posted March 1, 2017 Thanks Alan, I was diagnosed about three years ago with a PSA of 640 and a Gleason score of 9/10. I had bone mets spread around my upper body - even one in my skull. I was on Zoladex plus Bicalutamide for two years, which lowered my PSA to 4 - 5. About 7 months ago, my PSA rose to 19 over about three months and I have been on Xtandi ever since. This initially lowered my PSA to 4 again, but it has now risen to 8.7 over one 6-weekly interval. I have not had chemo. Thanks for the info on Lutetium-PSMA. I had not even heard of that therapy. It seems that it is available in Australia (see HERE). I don't know if it's covered by PBS or how much it costs. Do you have any info in this regard? Cheers, Tony Link to comment Share on other sites More sharing options...
Admin Posted March 1, 2017 Share Posted March 1, 2017 Tony Search box on our site: Lutetium will bring up a number of posts. Jim Link to comment Share on other sites More sharing options...
alanbarlee Posted March 1, 2017 Share Posted March 1, 2017 Good info, Tony - thanks. I guess you already know that your particular brand of PCa is likely to need aggressive treatment - which might well include Taxotere (docetaxel). Note that the hype about intolerable side effects with chemotherapy only applies to a minority of men, so this topic should be on your medonc discussion agenda - as should be a possible follow-up option, viz Jevtana (cabazitaxel). If you're having any pain issues with the bone mets, keep in mind that low-dose radiation therapy (IMRT) is often helpful. On lutetium, you seem to have tracked down some useful info, with more suggested by Jim. Although promising, this therapy is still considered experimental, and is not yet approved for PBS or similar listing. You would also need a test to check whether you are 'PSMA-positive', followed by a gallium-PSMA scan to plan subsequent lutetium treatment Rather than waiting on your next oncologist appointment, it might be useful in the meantime exploring how and when you might access this treatment by directly contacting Peter Mac in Melbourne (or by asking your medonc to do so). The chief investigator is A/Prof Michael Hofman. Good luck with your info hunt - you seem to be doing well so far! Cheers, Alan Link to comment Share on other sites More sharing options...
TONAR Posted March 1, 2017 Author Share Posted March 1, 2017 Many thanks Alan. Best wishes, Tony Link to comment Share on other sites More sharing options...
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