My PSA was 9.75 (07/28/2022) and testosterone 43 (08/17/2022) when I got my first ELIGARD 45mg dose on 08/18/2022. I'd been in a full time Foley catheter for two weeks at that blood
On 09/06/2022 PSA had dropped to 3.95 (18 days) and Testosterone to 17.
On 09/23 it had only dropped to 3.80 (5 weeks) and T of 10.
Despite those numbers I have very bad urinary issues that are worsening: Frequent (every 1-2 hours) small volume urinations, terrible urgency (almost incontinent if I stand up to pee), and a very weak stream that's almost a dribble. It's like I never had the TURPs. I can't get a good night sleep because I have to wake up to pee at least every two hours.
I'm wondering if since my pre-ELIGARD testosterone was under 50 before treatment (what my MO said it needs to be) and my testosterone was almost zero before treatment, does this mean I've already got castration resistant growths?
RO gave me oxybutynin (5mg twice daily) suggesting it might just be irritation. Minimal effect after two days on it.
Any thoughts?
Written by
Gl448
To view profiles and participate in discussions please or .
So sorry about what you've been through. You are on Eligard - Are you also on Zytiga + Prednisone? For my urinary issues that are somewhat similar to yours, they increased my Prednisone dose short term which helped, adjusted Flomax which helped. I'm also on prescription strength AZO. May I suggest that you expand your options with regard to your care team if these things have not been mentioned. After my diagnosis, I saw a total of 10 Dr's while I was looking for the right fit for my team - Uro, MO and RO. Read my profile for full history, it also notes PSA levels and time frame though I'm sure those will all vary case by case.
ELIGARD only. Nothing else. I imagine I'll get Zytigia or Xtandi at my 2nd MO visit on 10/13/2022.
I had prescription strength AZO for a week after both of my TURPs and a third time a couple of weeks after my cancer diagnosis TURP when I mentioned burning and frequent urination...I thought it was a UTI. I've got a few I didn't use of the Rx AZO, so I'll give them a try starting this evening. I've already ordered a supply of OTC AZO off of Amazon (two OTC are the same strength as the Rx I had) on the recommendation of the RO, although she was suggesting it to get through any urination pain once RT starts. I'll ask the Urologist for a long term Rx if I notice significant improvement. I don't have conscience pain while urinating, but maybe it's irritation in the bladder that AZO can reduce.
I've considered seeking/interviewing additional doctors maybe at UCLA, which is close by in mileage but very far away considering LA traffic on the 405 Freeway. Not that I don't trust my current team, City of Hope is a great cancer place, but not prostate specific at their office I went to.
Ah, yes, Flomax! I never took it for BPH until after I had total urethra blockage before my first TURP in Feb 2022. Uro put me on it, but around late May I had serious sexual dysfunction and stopped taking it with the ok of the Uro. When the "plumbing" started clogging again in late June I went back on it for a month, but the Uro told me to stop after cancer diagnosis.
I'll ask her, and/or the MO, if I should go back on it.
I love my Uro, she's fantastic at basic Uro stuff, and I would continue to see her for anything except cancer, even a third TURP if it comes to that, but I think the very aggressive cancer threw her off her game. Disappointed that she didn't know I needed a PSMA PET and ordered an Axumin instead...she'd consulted with an MO (not the one I'm seeing) and he told her to order a CT/PET pelvic scan, which she did, but then got pushed around by the imaging center to specify Axumin. Sigh.
My first Uro didn't start me on Zytiga right away - wrong. Shot me with Prolia - wrong. Admitted that my aggressive cancer was something he wasn't experienced enough to deal with and found someone else in the practice who said they would perform RP on me - wrong. Then suggest an Oncologist that was also out there. Good thing I had already decided to get at least 3 opinions on everything as I was just learning about PC.
First TURP IN March of 2022 because of urine retention total inability to pee from ongoing BPH. Nothing to indicate cancer at the time, PSA of 1, negative biopsy on prostate chips from the procedure.
Great results from that TURP, until I started blood and clots while urinating in June. I thought it was just normal post-TURP stuff, but it worsened all month and BPH symptoms returned. Cystoscopy in July showed new blockage and “strange looking material” in the bladder neck and bladder.
The cystoscopy also left me unable to pee again, so TURP #2. Guess it must have disturbed the tumor. 😠
This was my monster’s first appearance, then the PSA after that at 9.7. And of course 90% of prostate chips showing Gleason 4+4 after that TURP.
After my second TURP, i still had to self cathe for a 2 months. What a pain, but sure relieved the pressure. By the time they got done with my RT, i was pissing freely and it was like a gift.
Nothing worse than pissing problems. I feel for you!
I'm usually not a snowflake when it comes to pain and poking myself with needles and the like, but I just couldn't self Cath with the coudé catheters. It was just too painful each time, and caused a lot of blood flow after attempting to before my first TURP. After the Foley was removed post-TURP #1, I was pissing like a race horse with strong streams I hadn't seen since my 30s.
Comethe time blockage began before TURP #2, even the nurse couldn't force a coudé through the restriction. Had to go back on the Foley. Yuck.
Pissing problems are awful, but the damned constipation I've had through all this is almost as bad, and a lot more painful at times. LOL
After my first Lupron/Eligard injection, my Uro did a thirty day and 3 month psa follow up to chart my reaction to the drug. Then I got 6 month follow ups after that. I am on IADT (Intermittent ADT) so I can have at least a little better quality of life.
Isn't that an extremely low initial testosterone level (43) before the Eligard treatment? Did you mean 430? Doesn't seem like the Eligard has a lot to work with if T was only 43 initially.
No, not a typo/mistake. Forty-three (43) was my level (Quest Disgnostics).
Considering my MO says the goal is just to be under 50, makes me wonder why bother with the ELIGARD at that time. We had the same thought there
I’d been on TRT 200mg bi-weekly for years (putting me at about 500 on the T labs). I went off it cold turkey when I suspected cancer 7 or 8 weeks prior to that lab. I guess it was just some kind of rebound low. Not sure when it would have climbed back up, if at all. My natural T was about 260 before TRT.
Thanks for that graph. I need to look more closely at it. Unfortunately I didn’t have a PSA just prior to the Eligard injection, so my only starting point is the 9.75 pre-TURP.
The Uro made a point of notating my history with “catheter in place” for that PSA. I think it’ she’s suggesting part of that elevated number was from the “trauma” of the catheterization.
Anyways, with 9.75 ad a start point, the 3.95 on the next test seems in line with the curve, but the 3.85 two weeks later maybe not as much.
Most of the discussion here turned towards the urinary symptoms, but this was what in was looking for…I just didn’t make it clear that I was wondering if the ADT was actually working because I’d have thought symptoms wouldn’t worsen if it was.
Could you switch to Degarelix (Firmagon) injections? With Firmagon injections you have 50% less chance to develop urinary system infection. Plus lots of other advanteges.
Can’t do anything about switching until February, the Uro gave me the six month dose.
I’ll look into Firmagon.
I’m also curious about the advantages and disadvantages of the six month dose vs the one or three month. Clearly six months is much more convenient, but shorter doses would let you stop more quickly if needed (like to change drug).
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Update On Eclipse Trial-another failure. Has LU-177 worked for anyone?
Break after only 12 months of Eligard.
Fluctuating PSA
PSA 466
