PSA doubled even on ADT

My onco tells me there is no end to the combinations he can create when I go refractory. Somehow I believe him.

First question is - are you working with a good PCa oncologist?

You deal with one day at a time. It ain't over till its over.

Jaxum,
Along with the T test, if it comes back at castrate level, you may want to consider a bone scan to see if you may have developed a metastatic area. If so, spot radiation can possibly knock it back down.
In my case, this is exactly what happened, and the radiation seems to have worked well, as my PSA dropped to below 0.02 and has stayed there for over 10 months so far. With your PSA at 29, if it's mets, they should show up.
Bob

Jack,

Some guys about where you are talk about getting their PSA to go down by stopping the Casodex. Sometimes cancer cells can learn to use it to grow. When that happens stopping the Casodex or switching to a different antiandrogen can get them back on track. Something to ask your oncologist about.

Yea, i am 56, and my Rad Onc, was not very optimistic that he could help me, (and i wasn't either)
my cancer is spread to lymph nodes, and is all over the place by now. i also did not want to take the risk of further damage and loss of body control etc...
so, i dont know i was hoping the chemicals would work...
any way i go i loose it seems.....

jack

I just want to mention the fact that there is some chance your disease can be lymph-node only. Perhaps some of the sensitive scanning techiques (C11 acetate or choline) can identify the hot spots. Maybe others can tell you where the locations of those closest to you scanners are, I believe Sonny underwent recently those tests, that identified lymph nodes, but some were in positions that could not be radiated.

Just yesterday I ran into my ex-teacher who I remember limping 2 summers ago, as he tried to play soccer with his grandkids, he has advanced PC with bone involvement. Yesterday, he was riding his bike all happy. He looks really good. Stay positive, each day with a smile is a day that you won over the disease.

Jack ...

I understand the shock and scare ... been there. Take a deep breath and center, and keep on going. There are lots of options still for us at this stage.

If you're in SoCal you can visit Scholz or Lam in marina del rey. A couple of things from my journey that might help you ...

* My cancer was spread widely to the lymph nodes and the first Rad Onc i talked to said that they couldn't help (that was at a 'top' cancer center). Dr Scholz put me in touch with the top doctor in the field and within the hour we had a plan to do a wide field of radiation to my prostate and lymph nodes all the way up to my rib cage. Given my other options, the radiation turned out to be a very good move --

* When the PSA started rising, i got on the Provenge train as fast as i could. It's a proven drug with a very easy regimen.

* When my PSA kept rising, we did the 'standard' scans (CT and bone). They didn't find anything. I went to Arizona and did a C11Acetate scan and a F18 bone scan. Clear as day; all of the lymph nodes were fine, there was just a bone met in one spot on my collar bone. We're radiating that with spot radiation ... expect it to buy me some years.

* Next there are some interesting studies about the benefits of early chemo; that's next on my to do list!

Seriously, i encourage you to get a top medical oncologist working on this -- there are a lot of paths to take, and they helped me to get them fast and aggressively and cleared up some misconceptions.

Ray

Jaxum - please accept this in the spirit it is intended.

You have to get off the denial train with it being only an hour and 15 minute drive from Fontana CA to Marina Del Rey.

If as you say you work til you drop, what good is that $$ you made by not taking off work?

Sounds at a minimum like a sick day. If advanced PCa is not sick, what is?

You do get vacation time don't you? or can you work comp time and trade a weekend day for a week day when doctor is available.

Whether it's Lam and Scholz there in Marina del Rey CAlif or some other medical onco, you owe it to yourself to have your advanced care in the hands/brain of a medical oncologist, not a urologist.

On the affordailioty front, how much effort have you made to find what financial assistate for PCa patients may be available?

Tough Love and prayers.

LupronJim

Post Edited (LupronJim) : 4/3/2014 6:53:56 PM (GMT-6)

I just talked to my Onco on the phone, I will see him this Tuesday and he is going to start me on Zytiga and Prednisone, so I have stopped the casodex and I think we will continue the Lupron.. so now we will have to wait and see how I react to the new drugs...
he also said when the Zytiga stops working we might go to intravenous Chemo...wow that sounds like a last ditch effort that will buy me a few more months of life,,,,,
why does it seem like I am nearing the end already ?
I just don't know how this is going to play out, I really need ten more years of life to get my life in order
can I make it ten more years ? any bets ?
anyone have experience with zytiga and prednisone? how bad are the side effects ?


thanks
jack

Wow, hey that is great, that is a great website, thank you for sharing that, i will have to take a little time and study that, but what i can tell right away is that it is possible for me to get a lot more years with these drugs,. now that is fantastic news, the other concern i would have is if i can continue to work at my job at a decent level of productivity, without depending on my co-workers to carry my load for me...
so i will continue to pray for strength to carry on,
thank you for the good news, may God bless us all.

jack

I saw my Onc today and am now on Zytiga and prednisone, I took my first handful of pills this morning and so far I feel the same sluggish self, so no big change yet, I will do a blood test every thirty days now they say and see what happens, I am trying to get ten more years of life that is the goal and also still be able to work at my job, I am only 56 and too young to retire , so I will be a warrior here with the rest of you to fight on.

thanks for your help.
jack