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How long have you been on Xtandi?

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Posted 4/25/2017 3:36 PM (GMT 0)
Hi everyone! This site has been so helpful to me over the past 18 months. Just a recap-my husband was diagnosed October 2015. PSA was 1256 I believe, G9, mets to bones, tumors in lymph nodes and liver heavily involved. Since then he had chemo/lupron starting Oct 2015, and chemo again in August 2016. When he finished this latest round in December, his PSA was still rising. So doc started him on Xtandi. Wow what great results! His PSA had never gone below 10, so to see it now at .32 is amazing! He feels great! He does have mild fatigue, and shooting pains, but otherwise feels great. My question is, how long does this drug typically last? Doc said average is 16 months. Does the nadir matter? I'm just trying to get an idea of how long you have been on it, and how is it going for you? I'm just so shocked and happy that he is having such a great response! I feel like it is a miracle drug! Oh and by the way, since January 2016, his scans have all been great-tumors shrunk or gone. Liver tumors dead. I would appreciate anybody's comments!
Posted 4/25/2017 5:10 PM (GMT 0)
Kitty,
That is great news with the xtandi. My uro started me on xtandi 1/2016 and I could only stay for one month with the 4 pills. The fatigue i had was intense to say the least, so I talked him into reduced to 2 pills not a good idea psa went up. So a few months ago he put me on zytiga which the fatigue I can live with. I hear you about the shooting pain. That truly is good news Somethings work for some and not others. He is still on lupron?
Posted 4/25/2017 5:17 PM (GMT 0)
Wow- what a great response! And yes, there is a correlation between the nadir PSA reached and how long the drug will remain effective. I hope it keeps working for a long long time.
Posted 4/25/2017 5:23 PM (GMT 0)
Love it - great news.

Andrew
Posted 4/25/2017 5:57 PM (GMT 0)
Yes he is still on Lupron, will always be. The shooting pains are crazy, you never know where or when they will hit, and he gets them multiple times a day. He is a very positive person. He has never missed a day at work yet, except when he had the chemo crash which put him in the hospital for 4 days back in December 2016. He walks 4 miles everyday, hunts, fishes etc. I think he is superman! Back in October 2015, the doc told him he had more tumor than liver-yikes-so we believe he is a walking miracle. By the way, he takes the 4 pills right before bed, I think that helps with the fatigue. I think he would love to sleep in, but he is up by 7 every morning for work. TA can you give me any more info on the correlation with the nadir? BTW, his brother was diagnosed a month later with G8 that hadn't so called spread, and got his prostate out. Now he is going through 6 weeks of radiation and also is now on Lupron.
Posted 4/25/2017 7:01 PM (GMT 0)
Here's some stuff you might find relevant:

www.medscape.com/viewarticle/827466_1
/www.jscimedcentral.com/Oncology/oncology-2-1014.pdf
Posted 4/26/2017 12:37 AM (GMT 0)
Thank you for this information, although I have to admit there is so much I don't understand. He was considered castrate resistant last July, so 9 months after starting Lupron. I imagine that isn't so good especially since his PSA never went below 10. It was only the xtandi that brought it below 1. Not sure how to interpret the nadir at this point, if that's even possible. Not to get ahead of things, but I also worry what happens when xtandi fails.
Posted 4/26/2017 1:18 AM (GMT 0)
kitty19, I began Firmagon in June of last year (2016) and added Xtandi to the regimen two months ago (Feb 2017).

Initial PSA for Xtandi: 2.38 (2/17)
Month 1 PSA: .07
Month 2 PSA: .01

I was doing well with fatigue until we added Xtandi. It seems to have increased. I'm still able to go to the gym, walk the dog, do yardwork, but, it's a grind at times.

I'm also experiencing more "brain fog". But, for a .01 PSA, I'll take it.

I hope this helps. If you need more information, don't hesitate to reach out.

Tony
Posted 4/26/2017 10:58 PM (GMT 0)
I went on Xtandi in April '16. It did nothing for my PSA for the first three months, then PSA dropped to ~1 for 6 months. It is now edging back up at a rate of 0.1 per month for the last three months. My Onco is not convinced that it is time to investigate something different as yet. I've agreed that I'll stay on it until I hit ~4.0.

So a short answer is that once it kicked in, it has held PSA around 1.0 for 9 months.
Posted 4/27/2017 4:54 AM (GMT 0)
It has been forever since I was on this forum. My husband was diagnosed in February, 2001 with a gleason of 9, PSA 9. He had surgery April 2001, one nerve was taken, he had 35 radiation treatments August 2001 and has had several other treatments along the way. In April 2012 he started 6 treatments of Taxotere, then went on Zytiga, which only lasted a month before his liver numbers went sky high. November of 2012 he started Xtandi and has done real well since, until earlier this month. His PSA had been rising ever so slightly since July 2015, but never anything huge. His count was 1.96 in March, and 3.08 the 1st of this month, so after a bone scan 2 weeks ago and the discovery of 2 spots of activity in the pelvic area, he stopped Xtandi last Friday and tomorrow afternoon we go in for him to receive his 1st of 6 Jevtana treatments. I think the Xtandi has given him the longest run of any of the treatments he has had. He is 16 years out and we are hoping this will give us a few more years! He will be 71 in June. Hope this helps you. I have been so reluctant to write anything because for the most part he has done so well on this drug. I hope and pray the same happens for your husband! I was on here tonight looking for some info on Jevtana and haven't seen much. Will keep searching!
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