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User

Posted 07 Dec 2022 at 20:16

Cayambe welcome

you don’t mention if you had a digital exam? I would have expected that to have happened?

My experience was that the scans are important but a biopsy is essential before a cancer diagnosis is made

has this not been mentioned to you?

User

Posted 07 Dec 2022 at 21:32

Nigel, this thread is nearly two years old. Cayambe started treatment a long time ago!

Cheers,

Chris

User

Posted 08 Dec 2022 at 14:25

Hi 44 nigel - please look at my details. DRE right away after high PSA (64?) first by GP and then within 10 days by urologist. Thus started the process.

User

Posted 15 Dec 2022 at 20:58

Maybe I am posting this in the wrong thread but I had a PSMA PET scan yesterday and the tracer was flourodeoxygloucose-18

seems like this is the way for now.

btw as I waited for an hour and a half I was freezing cold so if you get offered this I would take a blanket!!

really tired of waiting for results and a treatment plan

i was diagnosed as Gleason 3+4=7 and T3 a N1

so very impatient to understand the way ahead Hopefully before Christmas!

User

Posted 27 Jan 2023 at 16:40

Monthly blood test showing no change. Still fatigue and some aches and pains that I will discuss with my oncologist in February.

User

Posted 22 Feb 2023 at 13:59

February blood test all remains good and three-monthly zolodox tomorrow.

However, I have become increasingly fatigued (i reckon grade 2) and 4 months after first mentioning it to the oncologist on Monday he suggested I reduce xtandi dosage to 120 mg per day and to monitor any improvement over 2 weeks. Lets see - I have no idea about how quickly any benefits of reduced dosage will become evident. Ideas anyone? I asked about a new scan and he said absolutely no need as PSA had been undetectable for 18 months. That is fine, after reading about side effects of xtandi it seems clear that aching legs, and muscle and bone pain are common and not symptoms of mets.

User

Posted 22 Feb 2023 at 14:42

Have you spoken to the PCUK nurses? The charity did some research on HT induced fatigue 4 or 5 years ago and may have suggestions

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 22 Feb 2023 at 16:36

Really good news on the blood results.

Hope you can mange to get the medication sorted to help with your fatigue and muscle/bones aches.

Best wishes

Elaine

User

Posted 24 Apr 2023 at 19:49

April blood test - PSA and testosterone remain undetectable. Only bloods out of sync were white cell count and neutrophils, but apparently nothing to worry about as probably a response to a tummy bug that has now gone away. Feel much better on 3 Xtandi regime but still tired, so started taking them in early evening.

User

Posted 02 Jun 2023 at 18:10

Blood test earlier this week - PSA and testosterone not detectable. Reducing daily xtandi from 160 mg to 120 mg has certainly reduced side effects. Thank you NHS. Continue with monthly blood tests and 3 monthly telephone call with oncologist that lasts about 2 minutes.

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