Coming to end of chemo, wondering what's next

Hi Harry.

Welcome to the forum, mate. Having battled  our disease for fifteen years, you certainly are a cancer veteran. I'm afraid I can't really help you, but there are a few blokes who are in a similar position to you, who might be able to. That's why I'm bumping this conversation.

Best of luck, pal. 

Edited by member 26 Apr 2025 at 10:51  | Reason: Typo

Hi Harry

I seem to be in much the same boat as you.

I was also diagnosed with PCa 15 years ago (Gleason 7 T3bN0M0) and treated with HT and radiotherapy. I had a biochemical recurrence in 2018 and restarted hormone therapy in May 2021 after my PSA reached 12 ng/ml. This was seen to be not effective enough by August 2023 when I started enzalutamide. By January of this year my PSA was rising steeply and I've now had 2 cycles of docetaxel out of 10 planned cycles.

I've been told that cabazitaxel is a chemo option after docetaxel has ceased working. There is some information about cabazitaxel on this website.

https://prostatecanceruk.org/prostate-information-and-support/treatments/chemotherapy

Tom

ps I am interested in how well you tolerated the chemo and what side effects you experienced.

Hi Harry

Thanks for the reply. As I said I've only had two cycles so far, my third coming next tuesday.

My side effects so far have been very mild. A bit of indigestion, food tasting very bland, a dry cough and loss of hair although there is still some left on my head. So far no mouth ulcers, no nausea and no diarrhoea. You have confirmed what I have read elsewhere that the effects are cumulative. I'm not looking forward to that.

I had radiotherapy in 2010 to the prostate - 60Gy in 20 fractions and 43Gy to neighbouring lymph nodes in 20 fractions. I've had so much that I can't be offered any further radiotherapy other than palliative.

I was also diagnosed with metastatic disease in the bladder wall in 2023. The tumour was removed by surgery in April 23.

In spite of all that I still feel very well and am pretty active although I sometimes think it is hard to separate the effects of aging e.g. feeling a bit tired after e.g. a 30-45 minute walk from tiredness caused by the therapy.

I hope your remaining treatment goes well.

Tom

Hi Harry

I would have thought that you would qualify for a PSMA scan to see if the metastases in your lymph nodes had gone.

I have no scans planned and PSA seems to be the method that the oncologist is using to measure my progress with the chemo. My last PSA was around 4 but I'm hoping for further reduction.

Maybe I'll get scans at the end of the journey.

I'm sure that you're glad that at last you can see the light at the end of the tunnel.

I hope that your last two sessions go well and good luck with the scan.

Cheers

Tom

Hi Harry

I attended the Royal Marsden in London from 2009 until January this year .I started there as part of a clinical trial and I did not have any problems in obtaining scans over these years.

However it takes me almost 3 hours to get there, so when my Marsden oncologist said I needed to start chemo I asked if it was ok to transfer to my local Milton Keynes hospital just in case I felt so unwell that I couldn't tolerate the 3 hour journey on public transport on two days every 3 weeks. They were happy with this and said the door was always open for a referral back to the Marsden in the future.

I don't know what the situation in MK is but they are expanding a lot in conjunction with Oxford Hospitals and a new PSMA/PET unit is being built or may already be open.

Fingers crossed it will be there when I need it.

Tom

Hi Tom,

I got your private message ok but apparently I’m not allowed to reply on there as I’m a newbie and haven’t contributed to any other conversations yet.  Haven’t actually got round to reading any other posts yet.  So I guess we’ll have to stick to this thread for now.

Commiserations on the lack of taste.  Mine lasts for about 5 days usually, gradually lessening, and there’s a kind of metallic taste to everything.   I tend to lose my appetite at those times, leaving my poor wife scratching her head over what to give me for dinner!

Nearly at the end and just got a new side effect – chemo nails.  Some dark patches are appearing under them.  The chemo nurse told me to soak them for 15 minutes every night to prevent infection.

My consultant has decided that I need a bone scan as well as the CT scan so will be having both in June.

Hope the curry does the trick for you. 

Cheers

Harry

Hi Tom,

Know what you mean about lack of energy!  The lift at our surgery was out of action again and unfortunately the phlebotomists are on the 2nd floor.  Took it very slowly with pauses at each landing.  Also realised what my wife meant about the hedgetrimmer being heavy.  I wonder how long it will take after chemo ends for the strength to return?

We’ve been having rather unexciting meals while the taste lasts.  Some things are ok, including Marmite so it’s fortunate that I happen to like it.  The dreaded oral thrush is threatening again too so it’s back on the Nystan.

Still, some good news today:  my PSA has dropped a little more to 7.1 from 7.9, and the testosterone is now undetectable since the change to Zoladex.  Also, my head and beard hair is already returning and even turning dark again, not that I’m particularly bothered about hair loss at my age. 

Hope your PSA results have been encouraging so far.

Cheers

Harry

Hi Tom,

That’s an encouraging start and a relief for you to see the PSA reducing already.  Shows the chemo’s starting to work.

I’ve never had RT, which I understand can also have awful side effects.  The brachytherapy gave me no problems, apart from being unsuccessful.  Prostap3 controlled the PSA for 5 years until Bicalutamide had to be added.  Took this for 2 years which at first reduced the PSA but it then began to double and a PSMA PET scan end of 2022 showed a slight spread through the prostate and into a couple of lymph nodes.  (I was told that after a while Bicalutamide ends up feeding the cancer so can only be taken for 2 years at most.)

They immediately changed me to Abiraterone + Prednisolone which soon brought the PSA down but it was only about a year before it started to rise again and changing from Prednisolone to Dexamethasone made no difference.  By November it had soared to 90 and they realised that there had been a further small spread into more lymph nodes so that was it – chemotherapy here we come! – plus a change to Zoladex.

Looking at comments on various forums, I gather that I’ve been very lucky in hardly experiencing any side effects from HT all this time and none of the mood swings, pain, nausea etc that have been reported.  How did you get on with it?

Cheers

Harry

Hi Tom,

Looks like we’ve both been lucky as regards side effects.  My old man also had no problems with Zoladex which he was on for about 12 years, apart from the occasional hot flush.  Eventually died at 88 from other causes. 

I used to go to the gym regularly and do an aerobics class until my back started playing up and I lost a bit of lung, which makes me a bit breathless these days.  Even so, I should do more exercise, even if it’s only a walk down the road and back.  We try to have a reasonably healthy diet with the occasional lapse and tend to keep the alcohol for the weekend.

I think my main bugbear is actually the steroids that I had to take with the Abiraterone and now, of course, with the chemo.  Makes your skin paper thin and I just have to touch anything slightly to start bleeding.  Looks like I’ve been in a fight.  I should imagine you have the same problem.  Managed to get an infection in one of the wounds recently and am currently on antibiotics which seem to be working.  Depends on the results of the scans but I’m hoping that, if I’m just on Zoladex after the chemo finishes, I’ll eventually be able to come off the steroids.

Cheers, Harry    

Hi Tom,

That’s one of the worst of the side effects and limits your daily activities to quite an extent.    My usual breathlessness worsened just before Christmas but in my case it was combined with a catarrhal cough. The chemo team were quick to whizz me into hospital under surveillance for three days, pumped me full of antibiotics, and told me after a scan that it had been pneumonia.  I was quite surprised as my temperature hadn’t gone up and, apart from the nuisance cough and breathing, on the whole I felt quite well.  Eventually the cough went and the breathlessness returned to a level I can cope with.  

I wonder at what point the dosage does become less effective.  It seems that they want to throw the maximum at you at first to see how well you tolerate it.  Some people have needed up to a 50% reduction, which must lessen the effectiveness to some extent.  They’ve reduced mine to 80%, and I felt better for it after the last two cycles.  I was told that it was normal practice for the final three.

I hope the reduction in your dosage will do the trick without the need for scans.  We’re certainly being well looked after.

Cheers

Harry