Very worried about treatment interruption

Hi Chocoholic28

Good evening and welcome to our prostate cancer family I am sorry to meet you under these circumstances but it's still great to meet you.

Yes mine is also "Aggressive" & "Treatable not Currable" My initial PSA was 1000+ but with HT after nearly 12mnts it stands at 0.9.

I am sorry to hear about your husband's medication but what I would suggest is to contact the hospital's PALS Service who would be able to chase this up for you.

Of you need me to find out the info on the PALS Service at your hospital please please let me know???

Prostate Worrier.

Hello Chocaholic28 .

I don't think it is a good idea to suddenly stop Abiraterone and Prednisolone. The Abiraterone clears out of the system quite rapidly and steroids normally need to be phased out of use to avoid side effects. The Prostap has a longer term effect on lowering Testosterone. You definitely need to speak to someone to sort out either a repeat prescription or if a change to something like Enzalutamide in place of the Abiraterone might be appropriate. Have you had a recent testosterone blood test to check whether your husband is still at castrate level. 

Hi Prostate Worrier, thank you for your reply. We've decided to go to the Oncology clinic tomorrow and stay there until they come up with the meds. We tried PALS but just got another answer phone. We only have 2 more days before our holiday. My hubby told the lady who said his review was cancelled that he needed the meds 3 weeks ago and she said it would be dealt with. Was it heck!

1000+ wow!  Glad the HT has worked well for you. 

Hi Alwayshope, thank you for your reply and advice. We've decided to go to the Oncology clinic tomorrow and have words with the receptionist as it's only 2 days before we go away.

His recent TBT showed he was still not completely castrate. 

Hi Chocoholic28 

Many thanks for your reply I do hope that you have got on ok at the hospital today??

Sorry to hear that you had no joy with PALS and the difficulties getting through.

Please please let me know how things go today??

Prostate Worrier 

Thanks Prostate Worrier.

Well, the problem seems to be that nobody told him he needed to take a PSA BT before they’d authorise more medication.  He’s been waiting for the meds, they’ve been waiting for his BT sample.  Result: they couldn’t give him any today but did take bloods and sent them off to the lab marked urgent.  He stressed that time was running out but it still has to be processed and authorised before meds can be sent to him (new arrangement: all O/P meds are now sent to one’s local branch of Boots as hospital pharmacy was getting inundated). 

So he may have them in time, he may not.  He still has enough steroids to last but not the HT tablets.  If not, he's going to cut down to one a day until we get home again.  It'll be interesting to know what his PSA count will be by the time he eventually gets a review!

Thanks so much for your concern.

Chocaholic

Hi Chocoholic28 

I am very sorry to hear that you are still having problems getting the meds for your husband.

The way mine works is having a B/T every 3mnts at the cancer hospital on a Friday and then I see my consultant the following Monday to go through the results and to collect my next 3 monthly prescription/Meds.

I do hope that you get things sorted & have a lovely holiday??

Please please let me know how things go???

Prostate Worrier.

Hi Prostate Worrier, pleased to report that they pulled out all the stops and rushed his meds through this afternoon.  It usually goes to the pharmacy at another hospital and is then sent on to our nearest Boots pharmacy but they let us shorten the procedure by collecting it at the other hospital.  Phew, what a relief!

Normally it’s as you say, 3 monthly reviews (usually by phone) before which he has a BT and is then reissued with meds.  Unfortunately his last review - face-to-face for once, at which his doctor was going to change his Prostap injection due to a rise in PSA - was cancelled and he’s currently awaiting a new date.  Hopefully they’ll now allocate one having received a new PSA result. 

Again, thank you for asking.  Kind regards, Chocoholic

Hi Chocoholic28.

Wow what a relief I'm so sorry please for you both.

Yes it is great when it works like that mind you should be the case anyway!!

I have been in that situation more times than I have had "hot dinners"

Yes things work great currently mind you they did try to change the appointment last time to a "phone call" but I was having none of it so I soon got it changed.

I'm so pleased  

Prostate Worrier.

Glad you got sorted out. Now forget everything and have a lovely holiday - anywhere nice?