Another new Recruit...

KrisPy 1 month ago

6 replies
186 subscribers
284 views

Good evening

I am coming to the whole Community thing a little late in the process having been diagnosed last September 2025. I will update the profile as I have seen that referenced many times in the threads, bear with me (after all I am new to this).

Essentially asymptomatic I asked for a PSA whilst attending GP for another issue (abdominal upsets). Glad I did as PSA came back as 953 which really started the alarm bells going. CT and Bone scans followed together with biopsy rather rapidly and advanced PC confirmed (T3 N1 M1A Gleason 4+5, Grade group 5 )

Am on Zoladex every 12 weeks, now on Darolutamide plus Prednisolone daily and have just had cycle 5 of Chemo (Docetaxel) today ( and am still feeling a little bit wired after the meds today hence the typing!!!). My consultant dropped into the last conversation that we would be talking aboutmRT at our next appointment in 3 weeks - a little nonplussed at this but after some research this looks like a classic Triplet approach.

I have noticed a weird effect of sun sensitivity - red face and slight swelling of face and hands - a rare thing indeed this early in the year but the weather has been so nice hasn't it! Checked side effects and buried in the notes is "increased sensitivity" , so on with the F50... All discussed with the team today.

I also talked at length about upset stomach - not sickness - and was prescribed antacids which I have had today as well as the anti-nausea stuff, so am hoping they work, as getting to sleep is made all the more difficult when sitting up (being one way to manage the upset stomach).

Fatigue is an issue - but I have found that exercise is, strangely enough, a good antidote. This involves walks, an indoor bike, resistance bands and kettle bells/dumbells . I am positive this is all helping and gives a good dopamine hit!!

Sorry if that is too much info as a newbie - but I am still full of steroids.....

I look forward to contributing to the group as I can and am able to in the near future

Mr U 1 month ago

The steroids are causing the red face and forearms for sure. Just a temporary thing so don’t panic.

It sounds like you’re in good hands and are coping well.

Take care

KrisPy 1 month ago in reply to Mr U

Many thanks Mr U - much appreciated.

David2017 1 month ago

Hi KrisPy welcome to the group. You are not late, I didn’t find it until 6 years after my diagnosis. You look to be on the same path I took and have done better than I did on the Docetaxel, so well done. No mad rush for RT so hopefully you can enjoy the summer once round 6 is clear. Ask any questions and keep in touch.

Best wishes, David

Please remember that I am not medically trained and the above are my personal views.

KrisPy 1 month ago in reply to David2017

Thanks David

Yes the RT was a bit of a blindsider but the stuff I have read here and on PC UK site all seems to point to good outcomes from the triplet therapy approach.

After 6 cycles of chemo we will be ready for a break and the chance to do something vaguely normal so would be happy to wait until late summer/autumn for RT as that is a huge time commitment if I go down the 20 fractions over four weeks route.

Docetaxel has not been too bad, but I am on 80% dose due to loss of feelings in finger tips and my PSA has stayed at the basement level across two cycles now so moving in the right direction. (But first night after chemo I am suffering today from not having had any sleep!!)

excavator 1 month ago in reply to KrisPy

Hello KrisPy,

I've been on triplet therapy (docetaxel, prostap, darolutamide) since early 2024, following recurrence from firsy treatment in 2016.

I had docetaxel in 2024, not sure what stage of treatment you're at are it looks like part way through chemo?

If you're interested in my chemo experience I wrote a blog, link below. Anything you want to ask, I'll do my best to answer.

All the best - Derek.

Prostate Cancer Recurrence - Triple Therapy

Made in 1956. Tested to destruction.

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Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

KrisPy 1 month ago in reply to excavator

Hi and Thanks Derek

Yes this is my first time around the treatment merry go round, started with Zoladex implant then onto Darolutamide then onto Chemo (just had fifth cycle of the six).

I too have brain fog and use a notebook and Notes on my phone a lot - the trick is to remember to write stuff down!!!

I was fairly fit before starting this and have found that trying to continue with exercise is helping. I have set myself a goal by entering the Tour de 4 on the static bikes in September (but this might not happen if RT intervenes but I will do the training and see what happens). Plenty of walking as well - but having lost my sense of taste I cannot reward myself with a pint at the end as I have found out that beer can taste horrible (who knew!!).

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