My husband's doctor is recommending he go to intermittent ADT after six months on Firmagon, then scans if/when his PSA rises. His PSA is at 0.02 and has been for two months, 0.03 before that, and it was at 24.2 at his first shot in August. It dropped to 0.66 after the first shot, then to 0.12, then 0.03 and has stayed at 0.02 for the last two months. Testosterone went from 630 to 22, and is now at 11. (Failed RP (April 2018) large 88 gram prostate PSA at diagnosis 34, and 8 weeks from surgery 17, pT3bN0M0, G9, +margins, ECE, one focus of SVI, PNI, negative bone scan, but no sensitive scans performed. I asked about Axumin or other more advanced scans before ADT but we were discouraged by the urologist because they wanted to start ADT right away (he was planning for adjuvant radiation) and at that time Axumin wasn't available here and once ADT was started we were told it would not be useful). Because of high post surgery PSA adjuvant radiation was discouraged by the radiologist because of the high likelihood of distant metastases (should have seen him before starting ADT...hindsight). I want to make sure he's getting the best care he can and I'm doing all the research for him. He's doing great, handling side effects of the ADT extremely well, but troubled by persistent incontinence (it drives him crazy). I welcome any opinions, research links, etc. Thank you in advance.
Intermittent ADT - when to start - is... - Advanced Prostate...
Intermittent ADT - when to start - is it too soon?
Intermittent ADT is an option for many. It should be noted that a good reason / analysis be offered up to support it. I know of a few men who mentioned that a trigger point or target that starts the treatment. For example, the target could be 8 or 10 (whatever). Once the 8 is hit, the treatment begins and (hopefully) the PSA numbers drop (to 4) and the treatment is stopped and the cycle is repeated.
This plan works (ADT) as long as the cancer remains castrate sensitive. Once it stops responding, then a new approach needs to be developed. I'll leave that one to the experts.
I've certainly learned that no two cases are identical. What 'works' for one doesn't mean it works for the next one. The disease is an enigma !
I've read many instances of 'something' got missed during surgery and you are in a new and more complicated reality. The surgery and incontinence seem to go hand in hand.
So many suffer from that post surgery complication. One thing I recall is that most of the incontinence problems seem to resolve themselves in about 1 year. I also read of KEGEL exercises to help speed up 'control'.
Keep us informed. I'm sure the community wishes you all well.
Thanks so much for your reply. We've only consulted once with the "advanced" guy who will be directing this portion of his treatment. Since he's had his last Firmagon shot and this transition is imminent we'll be meeting with him again soon to go over the plan again. I wasn't sure what PSA level or rate of rise would spur additional action. Thanks for bringing that up. We also want to ask him about genetic testing and if we should consider additional medications. My husband is very much looking forward to a break from the Firmagon, but I want to make sure we're doing what's best.
His surgeon had said he thought he should be on ADT for 12 to 18 months, but then when we met with the doctor who leads the advanced treatments he said we should do it for six months then take a break and see what happens. I've always wondered if maybe his big gnarly prostate and extensive ECE might mean something got left behind. That would certainly make it easier to zap with radiation, but his incontinence makes radiation a difficult choice and again, without scans to look for the source of the PSA, it's ruled out.
He has been doing his Kegels and actually had several weeks of PT because he had a pretty serious bout with levator ani syndrome a couple of months after surgery (terrible spasms). It was concentrated on his right side which was where the G9 part of the prostate was and where the margins were particularly compromised. But I got head shaking when I mentioned that possibility. He has been told by the urologist not to consider AUS or other surgical options for at least a year. He went to the ER in February of last year with acute urinary retention because of his prostate and that's when he eventually got diagnosed. His treatment was complicated by an acute gallbladder attack and rushed gallbladder removal which delayed his biopsy. He was self catheterizing and/or catheterized for weeks and weeks.
It's been an interesting journey.
Thank you again for taking the time to respond. I appreciate it.
Yep! Thank you! Will go read now.
I've been posting on wrong posts lately, is this a time for concern, or just an acute situation?
The current conventional wisdom is:
1. Once it metastasises, surgery or radiation is not useful, unless the cancer is threatening something important like say the spine.
2. Intermittent ADT is sort of the convention now adays. Until the Cancer becomes resistant to it. Non-intermitant ADT might indicate an out of date doc.
3. If you are doing ADT, make sure you get prescription for vivelle estrogen patches to ameliorate the side effects. If the doc doesn't offer this on his own initiative, maybe you need a new doc.
Thank you for your reply. I agree regarding IAD being more up to date and so I was encouraged the "advanced guy" was talking about IAD vs continuous but I just wonder if it is too soon to go to IAD since he's only been on it for six months and has been at 0.02 for only two of those. His urologist who did his RP and started him on ADT had said he thought he should be on ADT for 12 to 18 months. I do wish sensitive scans had been ordered while his PSA was still high before he started ADT.
Thank you for the info on the patches. Nobody has mentioned that to us yet. I'm hoping we can get to see Dr. Burgess soon.
Thanks very much for your insights.
That's a judgement call that you have to rely on the docs experience and intuition.
No one here has that kind of multiple patient clinical experience to even begin to have any kind of valid opinion.
The doc is not only treating but diagnosing at the same time.
If it goes back up he can restart the ADT.
Hopefully he's seeing an Oncologist specializing in Pca. Incontinence - get home deliveries of depends from Costco, NO SHIPPING COST. Their depends come in unmarked boxes.
BTW Where are you located, treated and doctor(s) names? This info helps us help you.
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 02/14/2019 6:48 PM EST
Thanks for the Costco recommendation. We've done pretty well with subscribe-and-save at Amazon. I'll check Costco and compare prices.
We are working on getting an appointment with Dr. Burgess in NC. He requires a telephone call from a referring physician. We've asked his urologist (surgeon) Dr. Hassan in Nashville, to do this and he has agreed. Dr. Hassan has been wonderful and the NP in his office has been our "provider" during these six months of Firmgaon shots, but now that a change in treatment is being suggested we're thinking we want a second opinion because the physician who manages advanced treatment plans is in the same practice, but a different location and while he seems like a good enough doctor I want a second opinion from someone with searchable history in treating advanced PCa, like Dr. Burgess.
Thanks for you reply. My wife (the coupon lady) tells me that Costco's cost are the least expensive (and even more so when they're on sale).
Hopefully someone here may know of Dr. Earle Burgess in N.C. and give you a heads up on him. Maybe contact Nalakrats he lives in western N. C. and he's a cool guy who knows his stuff.
Good Luck, Good Health and Good Humor.
j-o-h-n Friday 02/15/2019 1:06 PM EST
He’s the same as I was after RP stage pt3b, gl9. which is not good. See my profile. I had SRT and six months Lupron after failed RP. I’ve had RT and 13 months of ADT3 every time a scan found mets after SRT to prostate bed. I’ve also been on metformin, avodart, rosuvastatin and celecoxib the latter three prior to dx with PCa.
I think going on iadt after only six months on adt is too soon for a guy with his stats. But I’m no doc and it’s ur call. I’ve been lucky to have only oligomets ( 1-2) to bones which were treated with SBRT and haven’t had recurrence in any of those areas. Iadt didn’t work well for me due to two month psa doubling time. I hope you have longer time off.
Bob
Hi, Bob/Break60! I'm so sorry I never saw this reply!
Well, it's been eight months since his last shot of Firmagon (he had 8 total) and he remained at "undetectable" on while his T recovered and then in September his T= 476 and PSA =0.071. Two months later in November his T had recovered to just under pre-treatment level at 610 and his PSA= 0.41. We measured again on Dec 2nd and it was 0.52.
His MO wants to do an Axumin scan when his PSA gets a bit higher, but I can't remember the number he said, and do spot radiation on any treatable mets found and possibly delay restarting ADT depending of course on the PSA numbers. But it looks like it's moving pretty fast, so he may need to restart pretty quickly. Up to this point he's not shown anything on scans (no known metastases). His MO feels strongly about the benefits of having some time with testosterone to help mitigate the serious side effects that can happen without it. He was suggesting starting intermittent after six months, but we weren't ready to try it until after 8 shots.
When it's time to pull the trigger we're thinking of trying the Vantas implant Nalakrats recommends, after a shot of Firmagon.
My husband counts on me to keep up with this for him and help him decipher recommendations and next moves.
I appreciate all of you who offer opinions and perspectives I can share with him so we're better prepared to talk to the doctors.
Thank you
Timing of Axumin Scan?
Intermittent ADT criteria and rules
Does it make a difference?
