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Xtandi and PSA

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Posted 1/15/2013 5:25 PM (GMT 0)
Hello Everyone,

It's been a while since I posted, but it's been a real roller coaster ride. In 2010, my husband was diagnosed with Gleason 10 metastasized to his bones. His psa at the time was about 70. He has responded for a time to Firmagon, Lupron plus Casodex, Zytiga (for about 7 months), Estradiol patches (which stabilized psa at 20 after seeming failure of Zytiga), and now, along with the Estradiol, Xtandi. He has been on Xtandi for almost two months. Within two weeks of taking it, all bone pain vanished, but he was dealing with enormous fatigue and nausea and lack of appetite. He had no energy and lost weight. But within the last two weeks, his energy has returned enough to allow him to resume swimming 10 laps and he is eating more and has gained weight. People who have not seen him in a while say how good he is looking. He had to stop working because of the fatigue, but is resuming again and hoping to go back at full speed.

All this sounds good, but here is the problem-- After he had been taking Xtandi for two weeks, his psa went up from 20 to 28, after about another month it had gone up to 29, and the latest psa has come back as 39. This seems pretty weird, since he seems to be getting better every day. So, my questions is: Has anybody had such an experience, or does anybody know more about the behavior of Xtandi than I have been able to find out?

Though I have not posted much, I have been lurking when I can and admire you all. Knowing you are all here has made me feel less alone in this journey that none of us ever wished to take.

As always, I send my great thanks for any help and good energy to you all.

Carol
Posted 1/15/2013 5:41 PM (GMT 0)
My husband was on Xtandi since July with a rising PSA. But that isn't the reason he has stopped it. The scans showed "some" progression.
What we are learning is that PSA is not the only indicator for changing treatment. Baseline scans need to be done with follow up scans every 3-4 months while on the treatment.
For that reason, my husband is going back on zytiga because he was only on that for 3.5 months without a dramatic PSA rise but also without the scans to back the decision.
Have you had recent scans? that's what I would be looking at! Unlike your husband, my husband really felt the side effects of xtandi: fatigue and pelvic area discomfort.
Best wishes to your husband!
Posted 1/15/2013 5:51 PM (GMT 0)
Hi there, it is relatively new drug, but I hope there will be posters to answer your question. I am not sure if Xtandi can be increased in dosage, just like Casodex can, which can bring about a new response. You may also want to ask your doctor about a new drug Alpharadin, to be realeased sometime this spring - looks promising. Your husband feeling well, looking good is the best thing that can happen. Enjoy!
Posted 1/20/2013 10:54 PM (GMT 0)
My husband is on a double blind study of Casodex vs Xtandi.  We were told that Xtandi is a drug used to keep cancer from getting to bones, thus PSA is not affected.  Have been involved in study for 2 months.  Next PSA is Monday.
Posted 1/21/2013 1:21 AM (GMT 0)
Carol,

Is he still on Casodex while on Xtandi? How about Lupron?

Hudson-depends what setting you are referring to. If one does not have bone mets, Xtandi can be used to help keep it that way. I do believe that Xtandi is appropriate for many settings, including those with bone mets.

Jerry
Posted 1/21/2013 1:41 AM (GMT 0)
Also anxious to hear comments. We just started Xtandi this week and it seems there are such a varied response; which seems to be true for everything. He is still doing Lupron.
Posted 1/21/2013 3:18 AM (GMT 0)
Thank all of you for your replies. I am beginning to think that Xtandi is such a new drug that no one is sure how it works. For now, my husband, who got his psa number over the phone, tells me that it did not go up from 29 to 39, but only to about 32-34. Better, I guess. But here again is the good part, within two weeks of beginning Xtandi, his bone pain (and he has numerous bone mets) was gone. He suffered pretty badly with the side effects of fatigue and nausea until just fairly recently. He is now beginning to get up in the morning close to his usual time-- which was 6:00 a.m.-- after sleeping for over 12 hours and still finding it difficult to get out of bed. and today, he ate almost normally, without having to take a Zofran for the first time in the months that he has been on this medication. We should be having a consultation with the doctor within the week and, perhaps, will know more then. But, afraid as I am to say this, given all the various set backs and trips to the emergency room, it does seem as if something good is happening. So, I am wondering if the psa can rise because cancer cells are dying. I know when the Zytiga stopped working, the psa doubled in a little over a month and that does not seem to be happening now. The rises, if anything, may be slowing down.

I hope this information will be helpful to all of you and it is good to be able to share experiences here. All my good wishes and hopes go out to you all.

Carol
Posted 1/21/2013 4:27 AM (GMT 0)
Thank you Carol. This disease is so complicated and every treatment, every Pca guy, every SE, just everything seems to be so varied. My statistical mind can't make sense of it. There are some common threads and many of the advanced guys do seem to be following similar treatment regimens, but feel like we're getting to become like guinea pigs and running out of options. But we will not give up.
Posted 5/26/2015 1:05 AM (GMT 0)
Dad started Xtandi in Feb 2015 after Cassodex. He has McRPC that spread to bones and lymph nodes. He is 77.

It took exactly 6 weeks of getting worse before things started getting better with Xtandi. His PSA dropped from 80 to now 4. He is feeling great. Trying to be as active as possible. Stopped eating dairy and meat, lots of juices and veggies. No pain. We'll see how long this happiness will last.
Posted 5/26/2015 3:54 AM (GMT 0)
My husband has been on Xtandi for 30 months now. He had surgery 14 years ago, then radiation, plus various drugs. He has had a Lupron shot monthly for the entire 14 years. His PSA was 9 when he had surgery and has never gone higher. I believe the highest it has been is 3. something since surgery. It always amazes me when I see these high numbers and my husband with his low numbers getting the same treatments. He started Taxotere treatments when his PSA was 0.93 and some cancer was found in his shoulder area. His PSA has stayed low since then. Last week his oncologist called to say that the slight monthly rise he has been having is now at 0.91, so June's visit will be a time to re-examine treatment. He finished the Taxotere in September 2012 and hasn't had any scans since then. Once again, so different from the treatment others are given. He looks well, feels pretty good most of the time. His appetite is great and if you saw him on the street, you'd never know he has fought this for 14 years.
Hope this helps some and that they find some answers for your Dad.
Posted 5/26/2015 4:02 AM (GMT 0)
Sorry, I meant your husband, not your Dad!
Posted 5/26/2015 11:40 AM (GMT 0)
Hi Carol,

I am in a trial where I recieve Xtandi. My results have been pretty good. PSA down to .88 from 15 at the start of the trial. I have metastatic lesions in my lungs and lymph nodes in the area of my lungs. Nothing in bones. I also take a lupron shot every three months as well. I also take avodart.

The lupron shot used to make me quite lethargic and sleepy a lot of the time. When I added the avodart my energy level picked up a bit and the sleepy feeling went away. I also take some other meds that can cause drowsiness. So far the Xtandi has had no impact on my emergy level. I take it just before bed time and it pretty well puts me out within about 15 minutes. I have some back pain but not much and not constant. Had this before Xtandi and kept at bay by curcumin. Trial doc asked me to stop taking the curcumin and the pain has gradually returned.

I recieve full torso CT scan and nuclear bone scan every three months on the trial. The first scans at the three month mark showed some regression in the lung nodules and lymph node that was swollen. No new lesions were detected either in soft tissue or bone. In this trial PSA is not used as the decision parameter whether to continue or stop Xtandi. Progression as measured by the scan is the only measure for that purpose.

One thing that does not show up in the literature much about Xtandi is that it does cause a slight immune response according to the researchers. The trial I am in has another arm where they are using a vaccine based on Xtandi to try and boost that immune response.

I hope your husband continues to do well on Xtandi and his quality of life improves.

Don
Posted 5/26/2015 1:33 PM (GMT 0)
Hi Carol:

You can see from my signature that I started Xtandi after 2 years of Zytiga. However, after 45 days PSA kept rising rapidly so I shifted to Taxotere, with the option to go back on Xtandi after my treatments control the PSA rise. Some oncs say Xtandi should show an effect in 30 days, some say 60 to 90 days (Myers). As you say, we still don't know enough about the drug.

Hang in there,
Houseboy
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