Degarelix

 Eddie (eddiel) , my oncologist is planning to put me on Darolutamide at PSA 2.0.  She was all set to do it 2 meetings ago after I was increasing at double every 4 months, but apparently a trial recommended waiting until 2. I guess it is a gamble, if I was already on it, then the 1 to 1.5 year PSA lowering would already have run for 5 months.  Balance this against the chances of mets occurring while delaying.  Strange that your oncologist is working on PSA 1.5 though. My oncologist is linked to Southampton, perhaps it’s a geographic thing but I wonder who is most up to date.  Best wishes, David

Hi Tomjef, thank you for your update sorry to hear your now Gleason 9, but good to hear your feeling good with no pain. Tomjef Gleason 9 PCa can be controlled for many years, I'm Gleason 10 and have a good few years yet, unfortunately not allowed surgery, but hopefully someone with experience of surgical bone strengthening may offer some advice, my best wishes to you and your family and good luck with the orthopedic surgeon.

Eddie

Hi David, I know of someone on the forum who's been told their good until their PSA reaches 10.To be honest I was expecting  a regime change after my PSA doubled over 3, 3 monthly tests, we discussed me being castrate resistant and low secreting and sort of agreed, as I am doing well, to stretch out HT as much as safely possible without taking too big a risk as my time on HT is limited. There is a small possibility of me having a holiday from treatment, or intermittent treatment to possibly extend my HT by up to 18 months, I guess like you say it's risk V reward. My MDT in a month, we shall see, maybe my PSA will fall, David the likeliest for plan B is a Full Androgen Blockade, 2nd gen HT and back on bicalutamide. Sheffield is my PCa hospital, good luck my friend.

Eddie

Hi David2017 and eddiel .

The point at which salvage treatment should be initiated following radiotherapy is being re evaluated thanks to the development of things like the PSMA PET CT scan which can show up metastases at lower PSA levels compared to MRI or CT scans. This has allowed the possibility for using local therapies to kill off the cancer as opposed to opting just for alternative hormone therapies. The Phoenix definition of recurrence at a PSA of 2 has been a good guide but it has it's limitations for people like Eddie and my husband who are low secreters which is possibly why our oncologists have chosen a lower PSA point at which to act. How to act is the difficult question if cancer is found and we have to have faith in our experts to come up with the tailored plan for each individual. For men who have a recurrence many years after initial treatment, but whose PSA is rising very slowly and provided the scans are negative, then it might not be appropriate to initiate treatment until a higher PSA is reached. It would appear that the time to biochemical recurrence and the velocity (doubling time) are important factors in determining what action should be taken by stratifying patients into low or high risk.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10741753/#:~:text=The%20Phoenix%20criteria%20defined%20BCR,of%20salvage%20therapy%20(whichever%20comes

https://www.mdpi.com/2072-6694/16/4/764

Morning AH,  thanks for the links, I will need to read them a couple more times to take it all in due to CRCC.  If I remember lol. 

Eddie xx 

You are welcome Eddie. They are both pretty recent evaluations of the way thinking is going on how to treat or not treat recurrence.

Off subject but we have just had a tutorial with the osteopath on how to use a massage gun and resistant bands properly and she agrees the ball between the thighs is great so thanks and off to get a pilates ball.

Have a good day.

Hi AH, did you ask about the standing on on leg exercise, my physiotherapist calls it the kettle exercise as doing it while waiting for it to boil is long enough as is the number of times you have the kettle on during the day, I also use a mini trampoline which is also good for the inner core but fabulous for improving balance, no falls since i started using it, all my routines have at least 1 foot grounded at all times.

Eddie xx

Yes I did ask about the kettle exercise and the block is already installed - hubby is chief tea maker and washer upper so he will get plenty of practice.

The trampoline makes me laugh at the thought of an 80 year old who has a balance problem thanks to his stroke, and difficulty standing on 2 legs, trying to use one.

AH, just standing on the trampoline and holding on to something helps, It's where I started

Hi AH, I often wonder if these evaluations and guideline are able to keep up with how quickly therapies and medications are evolving