Here's my update. I've been hoping for a break from ADT after being on some form of it since January of 2013. As of today I am no longer taking Casodex and it's been almost 2 months since my last Lupron shot. My Testosterone was up from 13 last month to 141 just 3 days ago. It's nice to know that I can recover quickly but unfortunately my recovery will probably be short lived or at least change rapidly with some new treatment or procedure. I am staying off all ADT and any other treatments for now to "pressure test" what's going on now. I feel as good as I have felt since being diagnosed. So that's the good news.

Here's the bad news: My PSA is on an upward trend as seen in my profile signature. 0.67 on August 5th after being undetectable for just over 2 years after my RP. I don't have a prostate so it's probably not "good" PSA. I continue to be monitored closely and my C-11 scan in February was clean although it continued to show the sclerotic areas of previously treated disease. On July 28 I had another C-11 as a followup to an MRI I had earlier in July. It appears that my pubic bones are showing increased uptake. We believe the fire that was put out is smoldering once again. This corresponds with an increase in pain in the same area. The pain has never gone completely away but it has been manageable. It's becoming harder to control the pain now so a new treatment makes sense.

I am scheduled to consult with an RO and get fitted for a cast to be used with SBRT. We will most likely be starting SBRT to the bony areas of concern - by Tuesday of next week.

Has anyone had side effects with SBRT? I seem to remember a lot of good posts about the benefits but can't remember reading any cons, especially side effects, although I'm sure there are some. I'll be doing more research before next week but I appreciate any comments anyone has about SBRT or my overall plan.

Sorry you have to go through that.
At least SBRT is a good way to go. From what I hear around here the SEs are limited.

Andrew

A guy in my support group just had it to his hip bone, spine and femur - I think it was 3 zaps at 10 Gy apiece. No SEs whatever, just reduction in pain. SEs depend on what is nearby. I can't imagine why there would be any SEs at all with SBRT to the pubic bone. Maybe a sunburn because it's close to the surface? I really don't know - it's a good question for your RO. I guess they have to make sure that the penile bulb doesn't get too much - you can ask the RO what that dose constraint will be.

It's great that you are getting such a good response (on your PSA) from ADT, and that your T level is starting to come back so quickly. How high will they let your PSA get? Or do they just set a time limit? (everyone does the intermittent ADT differently).

- Allen

Gunner:
.

Sorry to read about your PSA rise.
I am in the same boat.

I am near the end of my HT vacation, as my PSA is heading back up sharply.
I'm scheduled for the C-11/MRI combo at Mayo on 10/6-7.

Then, if results warrant, SBRT. I'll be back on HT right after my scans (but before any SBRT).

Mel

Bobby:

This time, yes. I did think about it a lot.

I suspect if in 1-2 years I again need scans, it might well be a different one!

Mel

Gunner34-
Just want to let you know I am projecting my positive wishes in your direction in this battle-

here's to fightin!

rf

Gunner, so sorry to hear this news. Sending a boat load of positive thoughts your direction.

Sure will miss seeing you at GFMPH.

Cajun Jeff

Also, I seemed to have some kind of reaction a couple hours after I had contrast with my MRI. Felt nauseous, upset stomach, pain in my bowels, and a few trips to the bathroom. Feel better this evening but pretty wipe out from the long day.

Gunner, have you ever had Provenge?

With one PSA increase under your belt, might make sense to get the second PSA increase to qualify for Provenge, and do combination therapy like I did.

I did one Provenge cycle before, one two weeks later concurrent with SBRT and the third two weeks later after SBRT.

In theory the Provenge makes all future treatment more effective and the immunotherapy may help on the abscopal effect on areas not being targeted by the palliative SBRT

/en.wikipedia.org/wiki/Abscopal_effect

BTW, in answer to your question, no adverse side effects from either the SBRT or the Provenge. In fact I flew on SW in AM to LAX, had the treatments mid-day and flew back to San Jose in late afternoon since the two flights were less expensive than overnight stays in LA.

---------------------

My original question was ábout SBRT side effects so I thought I'd give an update on that:

For those that don't know my history - in 2013 I had several metastatic areas at diagnosis that ranged from nodes and bones around my prostate all the way up to my lungs, sternum and into my shoulder/clavicle. My pubic bones were a major concern at my diagnosis because of the concentration of cancer throughout each side. There weren't just spots, it was a mass basically covering the bones. Anyway, the Mets in my pubic bones were resolved by systemic treatments like ADT and chemotherapy as well as 36 treatments of IMRT.

So fast forward a couple years to August 2016. My pubic bones were lighting up again and became the target of the SBRT I just received - the entire pubic bone on both sides. It should be noted that pain on my left side is what I had been experiencing for years before being diagnosed and was the main reason I was originally seeking medical attention. My pain never totally went away even after IMRT and has required strong pain medication.

So, within a day or two after receiving SBRT, I had pain spikes in my pubic bones that were severe. I was told I might have a pain flare but I wasn't ready for the increase and needed to increase the amounts of pain medication I was regularly taking. I also was maxing out on ibuprofen and Tylenol although there was no noticeable relief from them. about 3-4 weeks after SBRT the pain spikes decreased steadily and I have had more medication free days in the last month than I've had in years. That's not to say these days were pain free (I'd say - manageable or bearable) but not having to load up on med's to get through a day has been wonderful!

Other than that, my only other noticeable sign from the SBRT is 4 football shaped marks on my hips, thighs and pubic area that look like light bruises. I'm assuming these are just burns or tissue scars from the proton beams. They do not hurt although my pubic bones are still sore to the touch (leaning or pressing against) as they've been for years now. I've said since my diagnosis that it feels like I got kicked by a horse - almost like a giant bruised area. The marks are a small price to pay for the overall pain relief benefit!

So, it seems that SBRT has been a very good decision for me. I'm continuing my ADT vacation and my latest PSA a week ago showed a downward trend. I've read that it can take some time to reduce the PSA so I'm counting on continuing the trend to get back to Zero!
I'm also finally feeling "recovered" after the treatments and surgeries from 2013 & 2014 and nearly 4 years of ADT.
This is a pretty good spot to be in for a guy that wasn't given much of an outlook.

Hello Gunner34,

I have been thinking about you, wondering how you were faring with your treatments. Your story has many chapters ... you've weathered many storms, my friend.

I'm pleased to hear about your drop in P.S.A. scores. I'm giving thanks for that right now, as I write this.

I know you are in good hands with your medical team at Mayo Clinic. It's a great facility, with an outstanding staff and top-notch facilities --- they really work to coordinate a testing schedule to suit the needs of each patient.

Since you are a "frequent flyer" at Mayo Clinic in Rochester, Minnesota, I recently discovered that they serve one million patients each year, from all 50 states, plus 250 foreign countries from across the globe. It's amazing to meet so many people from so many localities when I visit there.

Each person there has THEIR own story ... and Mayo Clinic has become a MECCA, so to speak, for patients from near and far. Several of my friends who share in my same diagnosis also travel to Mayo Clinic --- and some of them live in distant states.

I'm really thankful to see your latest update --- your treatment story has been valuable, as it has unfolded over the course of time, Gunner34.

Meanwhile --- I'm right here, standing alongside you as a comrade --- I'm thankful for your loyalty and support over the course of time --- and the outreach you have given to others. Anything you need --- I'm here for you, Gunner34. Support, advice, brotherhood --- you've got it !

Handshake of friendship,
"Cyclone Team Fan" ~ Iowa State University