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S1216 Clinical Trial Update - Ooops- Well Hell

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Posted 8/11/2014 6:29 PM (GMT -5)
I have a meeting with my Onco this Friday and in preparation, today I had a Dexa Bone Density Scan and a complete blood work up.

While my testosterone is reading <10, my PSA has gone up 50% to 11.9 in the last 3 months. Per my trial protocol, I had PSA tests for the first 3 months and the next scheduled test was month 6th. That was today.

Brief history on the trial; I started with a PSA of 92.5. The three months of tests came in at 20.8, 9.7 and 8.0.

While I am not scheduled for another PSA test until November, today I called the Trial Coordinator and changed that up just a tad. I ordered a re-test for Friday before I see my Onco and another test for September 5th, the day before I leave for NY.

I have many options at this point. I will wait to see what my Onco has to say. I also will wait to see what the Trial board has to say. I have contacted the Trial committee with today's results.

I have also called and emailed Scholz, Lam and Turner to try to arrange an appointment for this next week while I am in LA visiting my son. I have emailed them the complete history of my journey thus far and hope they will take me on and work me in.

I was going to wait until Friday to update my results on this trial, but after today's testing I thought I would throw this out there to my learned brethren for discussion. I would like to be more prepared for the meeting Friday.

As I said in a recent post, there are a bunch of you guys that are much smarter about this stuff than I am, so I am open to any and all recommendations.

Except maybe for drinking 4 glasses of Pomegranate Wine each day.

All in all it was still a bonus day though. I successfully worked my way through the Apple Store, without an appointment, to resolve an iPad issue. And I found a great sale on some new shorts to take with me to LA.

The rest was just a small blip on the radar for now.

Every Day is Still A Bonus,

Sonny

Post Edited (Sonny3) : 8/11/2014 5:32:15 PM (GMT-6)

Posted 8/11/2014 7:12 PM (GMT -5)
Sonny,
Sorry to hear about the rise in your PSA, things were going real well for you. Hopefully you can get an appointment with Scholz, Lam and Turner.

Sounds like you got a lot accomplished today so it was a good day. Going to the Apple store for service is almost as bad as a DRE.

Enjoy your visit with your son next week. Hopefully it will be cooler, especially in the evenings, in LA. I used to live in the SF Bay Area.

Bill from a Florida cool
Posted 8/11/2014 7:22 PM (GMT -5)
Thanks Bill, really looking forward to seeing my son. It has been too long since I spent some time with him. Of course some cooler weather would be great too.

I was talking to one of our HW/GFMPH brethren (you met him but I won't name him) about this new development and at one point he chuckled and then laughed.

He said, "We're sitting here talking about a PSA of 11.9 and it wasn't that long ago we were talking about dang near 100. So when do you think you will really start worrying?" Then he and I both laughed for a good 3 minutes.

Sonny
Posted 8/11/2014 7:36 PM (GMT -5)
Sonny,

I have had seven bonus days in the last week and yesterday when you called was the best. It was great to hear your voice. You are on top of the PCa thing and have many great options. Most important is to have a great time with your son. That should lower both your PSA and blood pressure. While I would love to see the shorts, I am not sure I am ready for those skinny legs of yours!!

All the best to you and Sherry,

Jack
Posted 8/11/2014 7:46 PM (GMT -5)
Sonny,

Not really much of a jump and could be a blip. Either way...lots of options.

Great talking with you yesterday...and thanks for confirming for me that I should make every day count and how to gauge each day...

Have a great week...

Jerry
Posted 8/11/2014 8:19 PM (GMT -5)
Sonny and Sherry joke around and call us "The Kids."

With that said,
Dad... You told me about your PSA rise but you didn't tell me they sold shorts at the Apple Store! And you certainly didn't tell me they were on sale! :)

Just a blip.... praying for JUST a BLIP!
Posted 8/11/2014 8:36 PM (GMT -5)
I was hoping your PSA would continue to go the opposite direction of your attitude and zest for life. Hope it's a blip but you are on top of things. Looking forward to seeing everyone in Rochester. Enjoy the time with your son.
Posted 8/11/2014 8:45 PM (GMT -5)
Whenever I go to see the Dr. To learn my test results I always say" give me the good news first." For whatever reason they will still give me the bad news first. So I have learned that if I want good news that I have to avoid the Dr. And the TV. Hopefully it is just a blip and if not you and your team will come up with a plan B.

Looking forward to meeting you and Sherri in Rochester. Bring those shorts with you.
Michael
Posted 8/11/2014 9:06 PM (GMT -5)
Well hell, Sonny! I'm really sorry to hear about this, but I'm also keeping my fingers crossed for the "just a blip" declaration. Maybe the big shots in LA will have some good news for you.

Otherwise, it's Scotch and pomegranate juice for you at GFMPH!

Jonathan
Posted 8/11/2014 9:13 PM (GMT -5)
Seems to me that you recently told us Lupron was not having too bad an effect on your libido.

Did you forget about no sex 72 hours before the PSA test?

Have it tested again while you are in LA with your son, and not pre-celebrating your first wedding anniversary.

Seriously Sonny, smart move going to see Scholz, Lam and Turner. Dr. Jeffrey Turner has done wonders for me, getting me on Zytiga, having me reimaged at AZ Molecular in Phoenix to prove I have no bone mets and went from stage IV treatable but not curable to locally advanced potentially curable with radiation.

In the cup half empty, half full department you are half way to having two consecutive PSA increases and qualifying for Provenge, Zytiga etc.

As we discussed on phone, the trial may also offer some treatment options for your situation if the PSA increase turns out to not be a blip.

Say hello to our mutual friend Tall Allen while you are in LA.

And have a happy 66th birthday on the 17th. JNF and I share the same birthday 2 days earlier on August 15th, mine being #66 like yours, Jack being another one of "the kids" like the WorryWarts.

Keep working the financial services industry Jack, we need you young guys to keep putting $$ into Social Security and Medicare funds so these funds stay solvent in our lifetime, with a little luck are there when you are Medicare eligible.

LupronJim
Posted 8/11/2014 9:23 PM (GMT -5)
Sonny I hear you can stay on protocol and start additional therapies. The one drug that may not be suitable is Zytiga. Since TAK700 is already a CYP17 lyase inhibitor as it abiraterone acetate, the benefits are not likely. That stated a dose escalation may be. In addition, an option on this trial is enzalutamide (Xtandi). But more options are obvious. I believe Scholz will recommend docetaxel + carboplatin. He is that a huge fan of Provenge. But if I were in your shoes I'd ask for it. I'm still trying to get down there while you're in the vicinity
Posted 8/11/2014 9:45 PM (GMT -5)
Tony - just so we understand....Scholz is or is not a fan of Provenge?
Posted 8/11/2014 9:49 PM (GMT -5)
Not the kind of news we like to hear, Sonny. But the Scholtz Lam Turner Overdrive should have plenty of ideas. Like Tony said the immunotherapy would be the way to go.. Maybe even a combo trial like Sip IPI that Scholtz is doing. You'll have to cut and paste...
http://www.cancer.gov/clinicaltrials/search/view?cdrid=749126&version=HealthProfessional&protocolsearchid=6411680
Safe travels,friend
Jim and Marie
Posted 8/11/2014 10:14 PM (GMT -5)
Jerry,
Scholz has used Provenge a lot. But when he wrote this piece it appeared that he prefers to use it out of the gate on not later in protocol.

prostatesnatchers.blogspot.com/2012/11/provenge-treatment-for-prostate-cancer.html

SO I don't know what he would suggest in Sonny's case. Sonny waited a long time to begin HT intervention. It will be interesting to see what he says in 2014.
Posted 8/11/2014 10:55 PM (GMT -5)
Hang in there Sonny. Hopefully you're teams will come up with something.

keep enjoying life.
Andrew
Posted 8/11/2014 11:47 PM (GMT -5)
Hi Sonny -
I've been out all day, and just got your message and saw your post. I agree with Jerry L that it may just be a blip, so let's wait for a couple of consecutive rises before reacting.

I think Tony makes a good point that Xtandi may be a better choice than Zytiga at this point.

If your PSA continues to rise, you know my gut feeling is to go for the combos. NIH is running a great combo trial of of Cabozantanib +Docetaxel. NIH is also doing a trial combining ProstvacVF+Xtandi that looks really promising. The best immunotherapy trial I've seen is going on in Augusta Georgia. They are combining Provenge, anti-PD1, and cyclophosphamide. I don't know to what extent they are willing to have the therapies administered locally. But in any case, I wanted to give you a flavor of the myriad trials and possibilities available out there.

And then there's the whole topic of radioimmunotherapy that Lupron Jim is pursuing.

Looking forward to seeing you next week!

- Allen
Posted 8/12/2014 7:22 AM (GMT -5)
Hey Sonny, sorry to hear about this and hoping it is indeed a blip.  Hopefully the boys out in L.A. will be able to fit you in next week.  No doubt in my mind you'll continue forward.  Keep us posted and enjoy time with your son.
Posted 8/12/2014 11:51 AM (GMT -5)
See, this is the evidence of the power of HW.

The support is tremendous and the collective knowledge and experience is something to behold.

You guys are the best. I have to be honest, last night was not one of my better nights lately.

I stayed away from here yesterday after my post and was absolutely re-vitalized from reading your replies. Thank you all for taking the time to send the love support and information.

Over the next few days I will be looking very closely at the options, clinical trials and other information you provided. I am quite sure that my Onco will not be aware of some of these options and trials. I will also apprise him of my plan to met with Turner.

So here is the plan:

>Retest the PSA

>Try to confirm the appointment with Scholz, Lam and Turner for next week.

>Test PSA again just before I head to NY

>Enjoy the hell out of the vacation and opportunity to see my old friends and make new friends at GFMPH.

>Come back home and formulate a new game plan and move forward if the results of the test prove to accurate and the rise continues.

Today is a little brighter and looking more like another Great Bonus Day.

Thanks again for your help and support,

Sonny
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