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Posted 6/19/2018 9:25 PM (GMT -5)
I was so looking forward to another undetectable PSA today, but it wasn't meant to be. SRT was back in 2016. It's been 12 months since I finished an 18 month course of Lupron. My testosterone recovered slowly - 29 in January, 230 in April and 250 today. My PSA was undetectable in April, but 4.7 today. Moving quickly, I'll have a bone scan and CT of the chest, abdomen and pelvis with contrast next week. I imagine I'll be back on Lupron in the next few weeks... I'm more than a bit unsettled about today's news.
Posted 6/19/2018 10:02 PM (GMT -5)
So sorry for the terrible news. A 4.7 rise in only a couple of months is shocking! All this maybe from a single lymph node? I'm a bit puzzled, and admittedly concerned as I go off Lupron next month (but negative nodes here). I'm curious what the plan was for the LNI, or was Lupron the plan, and this is the outcome that you were hoping would never come about? And have you considered the PSA may have been a lab error? A retest might be called for. Good luck to you. I hope your scans are helpful.
Posted 6/19/2018 10:08 PM (GMT -5)
TS, that’s a tough pill to swallow for sure. As Rob alluded to, I would at least ask for a retest before taking action on this new data. I say that after having a\experienced a 3.8 result 9 months after surgery, only to have it come back undetectable two days later, when retested. Your situation is different, but it’s still worth a shot
Good luck.
Posted 6/20/2018 6:29 AM (GMT -5)
TS... I agree with Rob and Ken I think I would retest just to verify the psa number is right. I'm reading thru your signature and trying to understand your dates you posted that you had SRT in Dec. 2016 and then had surgery Dec. 2017 and it's been 30 months since you started Lupron? I'm always concerned that not if but when my number will show up. I kinda worried about it and then just decided I'm not gonna live my life waiting for psa checks, When the time comes I will deal with it then. Lets hope that you had a bogus reading and it is still undetectable. A lot of us guys from the ADT and SRT thread will be following your posts cause most of us are hoping that we can stay undetectable and waiting for our testosterone to get where yours is for a very long time!
yeah Wishing the best for you TS

Larry
Posted 6/20/2018 7:49 AM (GMT -5)
Oh boy, I hope that PSA reading was a fluke.
Posted 6/20/2018 9:03 AM (GMT -5)

Skypilot56 said...
I'm reading thru your signature and trying to understand your dates you posted that you had SRT in Dec. 2016 and then had surgery Dec. 2017 and it's been 30 months since you started Lupron?

Larry, let me grab another cup of coffee and my Lupron brain will try to paste together his timeline...

Bx: Oct 2015
RP: Dec 2015
ADT Jan 2016 (guessing) to June 2017
SRT Dec 2016 - Jan 2017 (guessing)
PSA/T in Jan, Apr, Jun 2018

So it looks like RP two months post Bx, which is typical.
HT started soon after RP, SRT one year later (like me) to allow continence to heal...
so all of 2016 and half of 2017 on Lupron

Maybe not a totally accurate timeline, but the sig is a bit confusing by including days of month.
Hope this helps. Bummer about the sudden PSA spike. If he's already scheduled scans then it likely his doc has already reconfirmed the PSA. Also a pity he was just starting to get a taste of testosterone back again.
Posted 6/20/2018 10:40 AM (GMT -5)
TSG,

As said by others, failed treatments are very bitter pills to swallow. My PSA has been steadily rising since my failed RP and failed RT therapies, coming in at over 20 this month. Though I have known for some time that I have been headed for ADT, hearing my MO say the time is now sent my anxiety through the roof for about two days. I will starting Lupron next week and Zytiga next month. I have calmed down and it has been very useful for me to reframe the situation. My view now is that if a PCa suppression therapy such as ADT didn’t exist, I sure would be wishing it did.

It may be time for you to regroup with an MO for a plan. There is good reason to believe that there are years of survival ahead for both of us. Good luck.
Posted 6/20/2018 6:47 PM (GMT -5)
Sorry for the confusion. RP was 12/15, ADT was 3/16 to 6/17. SRT was 5/16 to 7/16. Thanks for the help.
Posted 6/21/2018 4:40 AM (GMT -5)
Lets see if my signature updates
Posted 6/21/2018 9:51 AM (GMT -5)

TSGlassman said...
Lets see if my signature updates

Looking good, Glassman. Still, that 4 point rise in just two months is disturbing, especially so long after SRT... As you've been off Lupron for about a year now, there would still be about 25% of it still in your system (by most accounts) and hence your slow rise in testosterone. But with the increased T also came the rising PSA. But is so sudden... that is not good at all. I'm hoping that reinstating HT is effective, and there are new combination therapies that exist now but were not available just a couple of years ago.

I know it doesn't look good, but once you have some more info, hopefully from your scans, some of the other forum brothers here who have had recurrence following SRT will be able to give you some guidance and reassurance.
Posted 6/21/2018 10:26 AM (GMT -5)
That PSA jump really does seem unbelievable. Are you doing a retest?
Posted 6/21/2018 4:44 PM (GMT -5)
Matt - You and I are brothers in that we both got stung by the USPSTF, though you much more than I.
I'm hoping that a year from now I will still be reporting zero for my PSA and a year after that maybe .01.

Good luck with the Lupron and the Zytiga. A bitter pill indeed, but I hope they work out well for you.
Posted 6/21/2018 5:22 PM (GMT -5)
Thanks Rob Lee,

I see two choices. Do nothing and die, or do ADT and live a few years. There are worse things than death. I will soon know where ADT falls on the spectrum. Lol

I sure hope you’re finished with this PCa BS.
Posted 6/22/2018 6:55 PM (GMT -5)
Okay, survey says...
Repeat PSA was essentially the same: 4.5
CT scan was negative from the neck through the chest and abdomen. But they noted a sclerotic area on the sacrum.
Bone scan of the body was negative except for the sacrum and the L5 vertebrae.
So we have metastasis to the bone.
Near term therapy is Casodex daily which will block the testosterone surge when I restart Lupron in 10 days or so.
I'm guessing the Lupron will work until it doesn't. Then chemo?
Your thoughts? Anyone have any idea of the long term prognosis?

Tony
Posted 6/22/2018 7:31 PM (GMT -5)
I’m thinking that adding Zytiga when you start Lupron will give a longer remission. Hopefully TA or someone else knowledgeable will respond.
Posted 6/23/2018 7:35 AM (GMT -5)

TSGlassman said...
I'm guessing the Lupron will work until it doesn't. Then chemo?
Your thoughts? Anyone have any idea of the long term prognosis?


Tony... I've read that chemo early on has better results than waiting until after castrate resistance, but that may have been in cases where chemo was initiated soon after SRT. Hopefully I will never have to find out for myself. And I am so sorry for your recurrence and especially the sudden mets. As you said, things were going so well. Good luck to you going forward.
Posted 6/23/2018 7:50 AM (GMT -5)
I can't offer any advice but to say sorry you are going through this
Posted 6/23/2018 1:44 PM (GMT -5)
TSGlassman

I have been on lupron 18 months and have had no problems. There’s a friend in my PC S group that
Has been on lupron for 10 years and doing well. We both have hot flashes but that’s no big deal.
Good luck!

E.T.
Posted 6/23/2018 7:55 PM (GMT -5)

Hello TSGlassman ~

Sounds like you are getting a plan of action put into place ~ it's not always what we want to do, but there's POWER in getting a proactive battle plan going.

Wanted to send a line, to let you know you have my support. My treatment history is shown at the end of my post, and each treatment I have had has helped me.

An important aspect of treatments is KNOWING that I am doing something proactive to maintain my health goals.

We're all in this together, TSGlassman ~ hope this finds you doing well. Keep posting and let us know how you're doing !

Handshake from across the miles,
CYCLONE ~ Iowa State University
Posted 6/24/2018 6:35 AM (GMT -5)
Thanks for the support. I've been investigating treatments for the PC metastases to the sacrum and L5 and came across Radio Frequency Ablation. From the literature, it looks like it's used to treat bone pain from metastasis. It makes sense that it can also be used prior to pain. Is there any experience in the group using it this way?

Thanks

Tony
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