As some of you know, I am now under the care of two excellent oncologists, including Prof. De Bono at Royal Marsden Cancer Centre. I was originally deemed to have a non-aggressive cancer (in 14 years my PSA has never exceeded 4.1) However, over the last 6 weeks (when I have been on no treatment whatsoever, other than 3 monthly injection) my psa doubled in 3 weeks (4 - 11) and doubled again in 3 weeks (11-22).
I'm baffled as to why this new aggression has started. The treatment plan agreed yesterday was to start Docetaxel on Sept 6th (I had a short holiday break booked). I stopped taking Enza when it was clear that my numbers were creeping up and the side effects were awful. However, I wonder if I should resume Enza (it was most effective at a quarter-dose) just to try to keep the rampaging PSA in check? I could take it until Sept 6th, and it may stop my panic from running away...
The other query I had was concerning my bladder. What I initially thought was a UTI (from the MRI scan I saw yesterday) now appears to be the enlarged prostate pushing against the bladder wall (no evidence of PCa in the bladder, but visible hematuria) Has anyone had experience of using anything to calm the bladder down? The oncologists say that apart from the psychological effect of seeing blood in urine, it shouldn't get any worse, but will only disappear when the chemo shrinks the tumour. Any suggestions?
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CrocodileShoes
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When did you stop taking Enzalutamide in relation to the two PSA draws? From my personal experience I have noticed that when I lowered my Bicalutamide dosage, PSADT plummeted to 3 months from 9.5 months before starting taking it. I have name it the "compressed spring sudden release" effect. My theory has it that the low PSA comes from hibernating cancerous cells which at the influx of Testosterone get out of their hibernation state all together. In your position not only I would continued taking Enzalutamide but, if I understood right you were on quarter dosage, I would increase it (say half dosage since full is a no-no for you) to see what will happen. If you haven't seen my Bicalutamide maneuvers thread it may be worth doing it now.
As for the hematuria, a few days ago, Daryl posted the link to a youtube interview with a (beautiful) lady-urologist specializing in bladder cancer. Definitely watch it. Her synopsis was that smokers who have undertaken irradiation have a 4fold risk of getting bladder cancer.
Sorry to hear that. I guess they want chemo before looking at LU 177? TA may respond but I think on here or on his blog there is something about combo of chemo and enza and ADT . But do not know if it is relevant to your situation. I guess reaching out to the Marsden team re the enza is wise but as u know the UK oncologists tend to be more Conservative in their approach. Best of luck. I am sure they are advising you well re the bladder. Hard not to worry though!
I have no answer to your questions, just wanted to say that we are all rooting for you. This must be incredibly stressful time for you, I hope you have good support system. I find uncertainty and waiting are the worst. Perhaps you could reach your doctor and ask if it would be wise to go back on Enza?
Thank you. I just heard from Prof De Bono who advises NOT going back on Enza as it can feed the tumour. Besides, he says that 'the PSA has no bearing in my mind and does not drive decision-making.' He also says that my PSA is still a very low value - doesn't feel like it to me!! Well, I have a DNA biopsy scheduled for next week, so I'm getting the next cans lined up to kick down the road. I'm just hoping they can find a mutation......
Regarding the raised PSA.. I understand the worry but if it’s any consolation my MO has a similar approach. My PSA has been oscillating between 8 and 15 for two years and is now at 19. But 6-monthly scan comparisons show no radiographic progression, which drives decision making. I can’t say I’m not a bit worried but it’s a systemic approach and apart from some bone pain, I’m feeling ok.
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