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Durable / long term remission with Xtandi /Enzalutamide?

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Posted 5/8/2016 5:09 AM (GMT -5)
Dear brothers,

I need a bit of a morale booster. I am looking for Enzalutamide success stories. Is there anyone who has achieved a durable / long term remission with Enzalutamide? The official data shows an average survival benefit of less than 5 months months. While that is better than nothing it is far from what we all are looking for.

I just started to take Enzalutamide myself. I had hoped to get a longer run out of my initial ADT (Firmagon & Bicalutamide). But after 14 months on that combo with continuously falling PSA I developed a small new spot in a lymph node. I was hoping that I could still stop this new growth with a surgical intervention. I had that node removed, together with my prostate and about 10 lymph nodes. Shortly after the operation my PSA began to creep up - from undetectable levels before the op to 0.05µg/l and then to 0.1µg/l. These are very low levels - but nevertheless, I had to accept the fact that I my disease is progressing under first-line ADT.

I know that there are a bunch of other treatment options - even after Enzalutamide. But I still feel a bit as if I have reached for the safety parachute that I had hoped to keep for later. Anyhow - hope there are guys who have been on Enzalutamide for a long time, keeping the beast in check. I look forward to hearing from you!
Posted 5/8/2016 6:20 AM (GMT -5)
I was in the Prost Vac trial at NIH but only received the Xtandi. It is a small trial and only about 27 participants as I recall. Xtandi worked for about 15 months for me and worked very well. When it quit it quit fast. But I felt better for the year or so that I was on it than I had in years. I did not get any of the side effects normally associated with the drug. (fatigue, head ache, and so on.)

Don
Posted 5/8/2016 8:30 AM (GMT -5)
Thanks, Don, for sharing your experience! What happened since Xtandi stopped working and how are you doing now?

best, m.
Posted 5/8/2016 10:05 AM (GMT -5)
I developed bone mets and that is what took me out of the trial as they were new to me. Had existing lung mets at start of trial and they shrunk about 10%. The bone mets moved pretty fast on me and were to my spine. Lots of pain on left side of torso so my onco said let's radiate. Five doses and the pain has resolved and I am back to an active life. My oncologist also said that we should start chemo (docetaxel) right away so I start that tomorrow. Not looking forward to it. PSA and T are still rising though I do not know what they are currently.

I think there are some criteria you must meet to get xtandi such as being hormone refractory. So your PSA rise, if it continues, may qualify you.

Just an aside. I met two others in the trial who did get the vaccine as well as the Xtandi. Both had been on the trial for almost three years (since inception) and had undetectable PSA. Both were in good health and had active lifestyles.

Don
Posted 5/8/2016 1:05 PM (GMT -5)
Mad,

I've been on Xtandi for 6 months, but I'm hormone sensitive and psa undetectable...so I'm not a good example of what you're looking for. I think you are looking for long term hormone resistant Xtandi users.

Don - I tried getting that trial but could not...know the people down there quite well...very nice people...did they / will they offer you the Prostvac now or after the trial is complete? Any indication when Prostvac might be approved?

Thanks.
Posted 5/8/2016 4:19 PM (GMT -5)
Don - thanks for the additional info!

And all the best for the chemo! I did six cycles of docetaxel and found it quite tolerable. it's not fun and the side effects get a little nastier with each round - but it was worth it. Together with my initial ADT the chemo reduced my tumor burden by over 70% and brought my PSA way down. Good luck!
Posted 5/8/2016 4:23 PM (GMT -5)
Jerry

Interesting to hear that you get Xtandi despite the fact that you are still hormone sensitive. All the best!
Posted 5/8/2016 4:54 PM (GMT -5)
Jerry, they did not offer me the vaccine nor was any mention of future administration made either. I had the impression that the results on vaccine side were good but they would not say much about it. They did give me some info on two other trials that I could apply for. One is a new drug that sounds like a combination zytiga/xtandi and the other was for docetaxel chemo plus a drug given for thyroid cancer. Cannot recall the name of thyroid med. The logistics of getting chemo and staying in a hotel, flights and so on seems a bit much for me so I will just go with my local guy. Hormone refractory is key to entering the trial.

Mad, sounds like you had some good results. I am hoping for the same. The doctor at NIH told me that I really did not have a high tumor volume. But it sure does crank up the psa when I leave it alone.

Don
Posted 5/6/2017 12:34 PM (GMT -5)
Don,

I'm curious as to your situation one year later.

I am dealing with recurrent PCa, too. We began Firmagon last June (2016) and added Xtandi 3 months ago (Feb 2017).

So far, the combo is great.

I've started to work on plans for "What if". We all know that these positive results won't last forever; it's good to have a plan for when that dreaded day when the PSA starts rising again.

How are you doing?

Tony
Posted 5/6/2017 4:18 PM (GMT -5)
Tony,
I'm not Don, but wanted to let you know my husband was on Xtandi from November 2012 until a couple weeks ago and did really well on it. He started Jevtana 4/29/17 and so far it hasn't been the greatest around here, but the 4+ years on Xtandi were a gift! Will see where the journey goes from here! Best of luck to you!
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