Off Xtandi, what next?

[taxman]

Well, I'm off the trail and I guess I'm somewhat relieved. Just discovered that Xgeva might have helped with my bone mets but it was not allowed on the trial. Also hoping that the brain fog will disappear. Having radiation now to several spots that have caused extreme pain ( back, shoulder, etc) and after only 3 treatments (out of 14 in total) I feel some relief. Now to treat the cancer.

My oncologist suggested Zytiga before we go to Chemo. He said if Xtandi fails, Zytiga will only work 15% of the time. He thinks its worth a try as we are not really sure that the Xtandi worked much anyway. My PSA did not rise but never really dropped much and so maybe the Zytiga would work for me. Am I foolish to try it or should I push for Chemo now? Would be grateful for some opinions. Also are side effects as bad for Zytiga?

[Scruffybut1]

I had chemo before zytiga. 10 cycles Docetaxel no real side effects. PSA came down to average of 2. Had some 30/40 bone mets. 5 months break with only Zoladex for company then Zytiga 1000mg daily plus 10mg daily Prednisolone. In first 2 weeks (September 2016) PSA down from 26 to 0.58. Continues to drop am now 0.06. 1 bone met left. Nothing new happening. Belief is that chemo smacked the PCa and Zytiga cleaned up afterwards. Only my experience good luck with your treatment. David

[Neal-Snyder in reply to Scruffybut1]

David, your reply arrived while I was writing mine, below. That's impressive! I'm happy for you!

I hope we'll have more good replies to taxman's question, both from people reporting individual experiences & perhaps from people with broader knowledge.

[Neal-Snyder]

What my med onc & other qualified people have told me is that either Zytiga or Xtandi has a 33% chance of working after you've taken the other. After my time on Zytiga ends, I'll want to take Xtandi, Provenge & Radium 223, in some order, before chemo.

You take prednisone with Zytiga to protect your liver, You test often to be sure your liver functions are OK. In my case, it's been 2 1/2 years & the only side effect is from prednisone: easy bruising. They cut my prednisone dose in half; my liver is still just fine & the bruises aren't as deep.

I think unless you were given the option of early chemo--which wasn't "in" yet when I was diagnosed--you should delay chemo until you exhaust your other options. We'll see what others have to say. Best of luck!

[Scruffybut1 in reply to Neal-Snyder]

Hi Neal, thanks for your note. I was diagnosed @167 PSA which rose to 200 pre treatment. Onco thought I had PCa for up to 3 years prior to symptoms and diagnosis and chemo and radio were not possible for me. Too many bone mets and spread through seminal vesicles and pelvic girdle lymph nodes. At that time my Onco was running Stampede trial designed to hit PCa earlier and they asked to enter. Didn't take to the professor recruiting so declined. However the Stampede results were excellent for the trialists and I have since benefited. Hit early and hard and I obviously believe in it. Turned 71 yesterday. Jog with the dog. Still do pushups. Feel strong and alert but susceptible to colds. And as I had early chemo another blast on my schedule should my results worsen as will probably happen. My Onco produced schedule in June 2015 and all OK to date. All the best.

[Neal-Snyder in reply to Scruffybut1]

Good story. Mine is that I was never told about PSA tests, & had no symptoms. Then I had a suspicious DRE with a new doc, got my first PSA test (60.7--yours dwarfs it), got a biopsy, got a RP which failed, had EBRT with Lupron which failed, & then I moved into your original range with a 160 before I gave in. Lupron for 10 years & counting, Casodex added until it failed, & Zytiga for the last 2 1/2 years.

I was doing great physically--playing hoops, doing yard work, taking long walks in the hills--but then a PCa tumor caused a spinal cord compression in Sep. 2011 at age 69. I had to use a wheelchair, then a walker, then crutches as walking sticks, & finally walking on my own in June 2012. Unfortunately, during my recovery, both knees were damaged & became arthritic. Worse, after I was doing those long walks in the hills again, I took a long walk under non-ideal circumstances in Bangkok 4 years ago this month, & my right ankle has never been the same--it's severely arthritic & painful. In fact, it got worse from longish driving in heavy traffic. So I haven't hit a 20 foot jumper for years, & I miss it!

[Scruffybut1 in reply to Neal-Snyder]

I only knew symptoms because two younger friends died having ignored them. My symptoms were confusing but I had some medical knowledge, wrote them down, shows my doc and said pick 1 from 3. She guessed right. My life with this thing is nothing like yours. Easy going to date. Another pal I saw Sunday had RP 3 years ago and still waters his garden and not the toilet bowl. His wife, a nurse, had mastectomy 4 years ago but currently clear. David

[Neal-Snyder in reply to Scruffybut1]

Well, I love your story. BTW, I had no symptoms.

[Pennysue1]

My husband Mike just finished zytiga for 4 months - did not work for him - Zytiga also put him in the donut hole - cost for silverscrip ins for part D Medicare was 8400 $ a yr - mike switched to United Walgreens- its $4400 a yr out of pocket - now he's going to Provenge Immunetherapy- medicare covered it - his prostate cancer went to his lymph nodes - feeling fine - had a bunch of radiation when taking zytiga- maybe the zytiga will work for you - hope so

[JoelT]

Hi Taxman,

As has been already reflected by the many other good comments, we do not know which order would be best. These studies have not been done. Zytiga has shown survival advantage both used in the pre-chemotherapy and the post chemotherapy stages.

Have you had Xofigo yet? If not it might be a good time for it.

As far as the oncologist's prediction about the efficacy of Zytiga, he is correct.

Joel

[motosue]

I will just give my experience. Diagnosed in 10/2010, Gleason 8, Stage 4. The cancer had already gone to my pelvis when diagnosed. Started Lupron and then a few months later after finding a doctor who would give me chemo, I took chemo. Later I did radiation. My PSA is still undetectable at less than .02.

Good luck and the best to you and your health.

Wilfred

[Inlindon]

I was on Zytiga for 7 months PSA dropped from 28 to 0.57. Tried it again later after a clinical trial (stopped because of side effects) PSA increased 5 to 29. Stopped and started chemo ( 5 treatments) PSA now at 18. Zytiga had little or no side effects.