Clear PSMA scan.?

[Walliam]

I started your journey in2018 with a G 3+4 and PSA of 28 ..I went on ADT and had Cyberknife SBRT treatment on my prostate and a suspect rib spot after a PSMA scan , All was good until my psa started to rise when I came off ADT ..My PSA went from 0.06 to 1.2 over a year . I’ve had another PSMA scan in February 2023 but the scan is clear. I’m going back to an Medical Oncologist ,,, what’s going to happen I’ve no idea ?.

[Hidden]

I think since you still have a (crispy) prostate, unless you get to 2.06 you are ok. I had surgery but i am pretty sure you are not considered recurrent until nadir+2.

[Walliam in reply to Hidden]

I’m going for a blood test and I’m not very hopeful.As I said my doubling time is constant every 3months and my oncologist says it’s too high for the treatment I’ve had,,I’m expecting 2.4 on this test .I hope I’m wrong

[Hidden in reply to Walliam]

I hope so too. Its good that you have a dr that is keeping an eye on you.

[Tall_Allen]

Why did you come off ADT? Was it too hard to take?

[Walliam in reply to Tall_Allen]

Hot flashes were my main issue.I had some really rough days with it But I got in really good shape kept my muscle mass and all bone density were perfect. I finished the course ,,two years

[Tall_Allen in reply to Walliam]

ADT is only 2 years when there are no metastases. I guess your doctor wasn't convinced that the rib spot was true. But the rising PSA, if confirmed, may indicate you have systemic disease. You may have to go back on it.

[Walliam in reply to Tall_Allen]

I’m thinking you could be right

[bunny91 in reply to Walliam]

I had hot flashes every 25 minutes until my doctor put me on Megace. Haven't had a hot flash since.

[Walliam]

I know there aware of the fact that I didn’t tolerate ADT well .I had severe hot flashes multiple times per day .I’m thinking maybe a short to medium dose on a chemo tablet.

[Walliam]

Docetaxel also common name is Taxotere supposed to be very good with very little side effects.I’ll post any updates

[Walliam]

Most are IV and some are table I believe

[RMontana]

Doubling time is more important than PSA level. See this commentary.

healthunlocked.com/active-s...

[Walliam in reply to RMontana]

I’ll post results in 2 weeks I’m getting a blood test on Tuesday.But my doubling time is around 4 months

[PabloK]

So I'm in a similar boat. My psa started to rise in Dec 2021 so I've been tracking it monthly. Mayo set a 2 threshold to take action, but after hitting 1.6, it dropped to 0.7. So I continue to monitor and the plan is to reimage once I get over 1.5 to see if there are any actionable sights and likely lupron/ zytiga. Good luck

[Walliam in reply to PabloK]

Great to hear that.I’m hoping for a similar result.I’m assuming you had radiotherapy like myself and a PSMA scan Have you been on ADT ?

[PabloK in reply to Walliam]

I was on lupron/ zytiga for 2 yrs and my.psa was ND for pretty much the entire time so I stopped w the ADT in 2021 and hoped for a cure....but I guess I'll settle for chronic disease management. My next psa is next week so I'm hoping for the best but pretty much resigned to going back to ADT at some point

[treedown]

My MO said active surveillance or ADT if clear PSMA as Talented said, my last PSA was 3.6 but PET found 4 small spots upper spine. They want to radiate them and I am leaning that way but researching as much as I can. Had my first Lupron shot last Wed and waiting to see what 2nd gen I will end up on. My Casodex prescription is lost in the mail and the insurance hasn't approved Darolutamide or Enzalutamide but told my MO they would approve the latter. So for now just Lupron and hoping there's no flare in my mets. Radiation approval came late yesterday.Good luck on whatever you do.

[Walliam in reply to treedown]

Thank you .I’d go with the radiotherapy for sure. After being on ADT for 2 years that wasn’t pleasant Best of luck on your journey .

[treedown in reply to Walliam]

Just trying to wrap my head around the risks. They were explained to me and it took a couple days to sink in while insurance reviewed the referral.Actually I had my MO meeting one day, my RO meeting the next so the whole plan decided in 2 days and my first Lupron shot 4 days later. I think the whole thing started to hit me yesterday even though I have been expecting it since last year when my PSA hit .5.that was about 7 or 8 months after I stopped ADT. Next PSA at the end of the month.

[Walliam in reply to treedown]

I know my MO and RO meet on a regular basis and my results are with my MO .So your a step ahead of me but I’m expecting to be put back on ADT since they can’t find anything on the PSMA scan

[treedown in reply to Walliam]

I was wondering what would happen if my PSMA came back negative. Not sure if I am relieved or would have preferred that but nothing I can do about that now. My PSADT went from 1.3 to 2.2 months which seems to mean it slowed down. Not statistically relevant I am sure but it was better than the opposite. My hope will remain that this radiation will hit the cancer hard and knock it back to 2019 at least. Thanks for the reply.

[Walliam in reply to treedown]

No problem.Best of luck

[Prostateless2020]

Consider Orgovyx for ADT. I've been on it for six months will little to no side effects. MILD hot flashes which pass as quickly as they come on.

[BMT07 in reply to Prostateless2020]

Agree. I've been on Orgovyx for almost 3 weeks and so far no side effects. Good luck.

[Walliam in reply to BMT07]

I was onDecapeptyl and I was fine for the first 2 months Then the flashes started and they were bad

[Walliam]

Hi , So had my bloods done and PSA is at 2.58 up from 1.8 over 4 months As I’ve said no mets complete clear PSMA scan and PET done in 2020 with PSA around 0.2 was clear but I think myPSA might have been to low for any result So my MO has told me I have (in his words ) incurable cancer and has put me back on Decapeptyl and suggested I try an anti depressant tablet to help with the hot flashes ?I haven’t come across that one before I asked him about any otherADT and he said they were basically all the same .Obviously I’m devastated with the results. So is this my life going forward he says they can’t find it so they can’t treat it.I feel he’s efforts weren’t great Any suggestions going forward would be much appreciate Thanks