Coming to end of chemo, wondering what's next

User

Posted 25 Apr 2025 at 21:49

Hi, I’m a newbie to this site, but not to prostate cancer which was originally diagnosed 15 years ago, although I had 7 years in remission after brachytherapy. I somehow knew it had returned but it was a blow to find out it was now aggressive and Gleason 9, not curable but treatable.

However, HT kept it at bay for 9 years until early last year when it spread into the lymph nodes in my pelvic area and my PSA went from 0.8 to 90 over 9 months. My consultant decided it was time to get the big guns out in the form of Docetaxel chemo and changed my HT to Zoladex. I’ve recently had my 8th chemo dose with 2 to go and then a scan to see what effect it’s had if any. My PSA is currently down to 7 but the reduction seems to have slowed right down so I’m not sure whether it’ll ever get back to 0.8 or lower.

I read that the prognosis for aggressive cancer is 8-10 years. Well, I’ve had 9 of them so we’ll see. I know they’re always coming up with new treatments these days so all one can do is make the best of every day and keep hoping.

User

Posted 26 Apr 2025 at 09:44

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 09:51 | Reason: Typo

User

Posted 27 Apr 2025 at 22:00

Thanks Adrian. Well, it was more to say ‘hello’ and introduce myself to the community rather than an actual question. Must say I’ve been grateful for all the help and support I’ve been finding on these and other forums over the past few years, it makes a hell of a difference when you’re battling cancer. All the best.

User

Posted 29 Apr 2025 at 16:01

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.

User

Posted 29 Apr 2025 at 21:46

Hi Tom, Thanks for the info about cabazitaxel. It may well come to that. I’ve been told that if you’ve had brachytherapy, you can’t have radiotherapy later. Don’t know if that’s true.

I was put on abiraterone which I believe is an alternative to enzalutamide. My PSA reduced very quickly to 0.8 and stayed there for a couple of years but from last January it began to rise steeply.

I had so few side effects from the first two chemo cycles that I wondered if they were actually working. I’ve been lucky in not having experienced the horrific side effects that some people get, including nausea, but it is cumulative so I’ve gradually found myself getting a bit more tired after each cycle and losing strength (discovered that when attempting to use the hedgecutter!). 3 days after the dose my taste buds are affected for about 5 days. My main bugbear though, from the 3rd onwards, has been oral thrush which makes my mouth and tongue very sore but the antifungals they prescribe work well. After the 7th I felt really rough so my oncologist has reduced the dose to 80% for the last 3 and I felt much better after the 8th. I’ve lost body hair, eyebrows and lashes but not all of head hair, although that and my sparse beard has gone wispy. It’s actually started growing again already but apparently that can happen.

How are you getting on with it so far?

Harry

User

Posted 02 May 2025 at 15:24

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

User

Posted 02 May 2025 at 21:37

Hi Tom,

Thanks. Hope all your other cycles will continue to be relatively mild. Haven’t had indigestion or dry cough myself, although they seem to be common side effects. I have had a small amount of diarrhoea recently, fortunately when I was at home. Could just have been the curry though! Anyway, some OTC loperamide soon fixed it.

Sorry to hear you've had to have tumours removed from your bladder. Coincidentally, I had an upper lung lobectomy in 2023, unrelated to the PC. Two small tumours removed with clear margins and so far so good.

I’m feeling ok at the moment; in fact we went to have lunch with friends today and I didn’t feel tired at all although the lobectomy has left me a bit breathless and aware of the slightest slope. Because of that, I admit I don’t exercise nearly as much as I should and tend to prefer using a lift where available.

My 9th is next Wednesday. I now have an appointment for my CT scan in June to check whether the tumours have shrunk. As you can imagine, we’ll be on tenterhooks waiting for the result.

All the best, Harry

User

Posted 03 May 2025 at 18:04

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

User

Posted 04 May 2025 at 11:24

Hi Tom,

Must admit I felt a bit disappointed that it’s only going to be another CT scan. I’ve only ever had two PSMA scans since I was diagnosed in 2015 and had to go up to London for them. (There was quite a wait as it appeared to be the only PSMA scanner in the area.) I understand that, although they give a more accurate result, they’re extremely expensive so maybe it comes down to NHS funding. I’ll ask at my next review anyway.

At present my progress is also based just on my PSA. They originally marked me in for 6 cycles with a scan, then 8, but as I’ve tolerated chemo well, they’ve gone for the full 10 before the scan. It may be that they’re waiting to see how much further my PSA drops. It’s currently 7, down from 90, but the reduction seems to have slowed down recently. I suspect you’ll get another scan at some point depending on your PSA results.

Best of luck

Harry

User

Posted 05 May 2025 at 16:29

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

User

Posted 07 May 2025 at 18:28

Hi Tom,
Hope your chemo went ok yesterday. Had mine today, all ok. It will probably be Saturday when the side effects kick in, usually affecting my sense of taste.

Glad you managed to get transferred to your local hospital –as you say, you never know how you’ll be feeling afterwards and 3 hours is a long way from home if you’re feeling rough. Fortunately our hospital is only a 20 minute taxi ride away in Southend. I understand the Royal Marsden is very good - my youngest brother was also diagnosed with PC a few years ago and is under them, only for active surveillance at the moment though.

Out of interest I checked the costs of the various scans. CT scans are roughly a quarter of the costs of PSMA PET and PET scans so I’m not surprised the NHS are frugal with them. Our hospital is part of a large group of hospitals and centres in Essex. A few years ago a new PET scanner was delivered to Southend and a dispute arose between them and Basildon as to where it should be located, while it sat wrapped up for a year or so. It looks as though Southend won in the end though so it will be something to discuss at my next review.

Hope your side effects will continue to be mild.

Harry

Notification

Join the online community now.