I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

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

User
Posted 09 May 2025 at 22:34

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

 

 

User
Posted 13 May 2025 at 08:29

Hi Harry

Thanks for the update.

The last few days I've had a lack of energy. Cutting my small lawn was a bit of a challenge. I had to rest several times to complete it. Even walking upstairs is leaving me a bit breathless. I think things are improving a bit now. So far I don't have the dreaded metallic taste.

I expect that I'll probably experience side effects similar to yours in the future.

Cheers

Tom

User
Posted 13 May 2025 at 21:01

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

 

 

 

 

User
Posted 15 May 2025 at 12:35

Hi Harry

My PSA went up rapidly from 0.4 in Oct 2024 to 3.9 in Jan 2025 despite still taking enzalutamide. This is why I'm now following your chemo pathway.

Results so far are encouraging. My PSA after the 1st cycle was 3.8 and 3.0 after the second.

Goold luck with the Nystan

Cheers

Tom

User
Posted 16 May 2025 at 18:01

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

User
Posted 20 May 2025 at 11:30

Hi Harry

I guess I was very lucky or have a cast iron constitution until now. I had 3 years of zoladex from march 2009 until march 2012 (3 years was seen as standard at that time) with no side effects. I had to restart zoladex in may 2021 again with no side effects that I am aware of.

All through this time I would run for about 1 hour 4 or 5 times a week. That and being careful with my diet maybe helped to combat any side effects. On the "negative" side my daily visits to the pub for a couple of early evening pints never ceased and I'm still going there most nights. Unfortunately age and arthritic knees have meant I had to give up running a couple of years ago.

My radiotherapy was in 2010 and I must have had some side effects but don't remember that they were debillitating.

Cheers

Tom

User
Posted 22 May 2025 at 22:19

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    

User
Posted 23 May 2025 at 15:29

Hi Harry

I saw one of the oncology doctors this morning and told her that my main side effect was breathlessness after mild exertion. She has decided to reduce my dose by 10% for the  next cycle to see if there is any improvement. She assured me that this does not reduce the effectiveness of the treatment which  makes me wonder why I started at a higher dose in the first instance.

If this does not help I've been promised chest CT and ultrasound scans. I can't complain about my treatment.

It's interesting what you said about paper thin skin and steroids. I have splits on two of m y finger tips about 3mm long. I had this after my first cycle. Vaseline and skin moisturiser seems to help. I also am bruising easily and according to Dr Google this can also be caused by steroids. So far no blood except a few spots when I blow my nose.

Cheers

Tom

User
Posted 25 May 2025 at 16:30

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

 

User
Posted 26 May 2025 at 09:34

Hi Harry

I have  been reading the NICE guidline from 2006 on docetaxel treatment for hormone refractory metastatic prostate cancer. The standard dose of 75mg/m2 comes from a pivotal randomised controlled clinical trial (TAX327) where 335 patients were treated with 3 week cycles of docetaxel at 75mg/m2 up to a maximum of 10 cycles. This treatment was compared  with two other treatments.

As a result of this trial  and some others as well as input from clinical experts NICE decided in 2006  to approve 3 week cycles of docetaxel with a maximum of 10 treatments.

NICE reviewed docetaxel treatment in 2019 with the latest bevidence from new studies including STAMPEDE.They were happy with the 75mg/m2 dose. I'm not sure if any other dose has been tried in a clinical trial.

So, this still leaves the question. At what dose does docetaxel cease to be effective?

Cheers

Tom

User
Posted 28 May 2025 at 21:36

 

Hi Tom,

I read that 60 mg/m2 is the lowest they reduce it to so I’m now on the lowest dose.  If that dose still can’t be tolerated by some people, they stop the treatment.

I also found details of a study carried out about 20 years ago.  In view of the toxicity of the taxane-based chemotherapy they investigated biweekly low doses of Docetaxel (30 mg/m2) in patients with HRPC.  The conclusion was that this could be considered an effective nontoxic therapeutic option to be confirmed in larger scale trials.  There were also trials back then for weekly treatment cycles of low dose (25 mg/m2) Docetaxel for patients with HRPC previously exposed to chemotherapy, which they reckoned were effective and well-tolerated.

I haven’t been able to establish what the eventual conclusions were, or whether these regimens were eventually approved.

Had my last cycle today.  They were running 2½ hrs late so didn’t get started until 5.30.  Have started getting blackened nails recently and actually lost two toenails the other day.  It’s a common side effect of Docetaxel and I understand they grow back eventually.  They just told me to keep an eye on them in case of possible infection and make sure nails are kept short so they don’t catch on clothing.

Making the most of my food in anticipation of altered taste in a few days’ time.

Cheers, Harry

 

 

 

 

 

 

User
Posted 29 May 2025 at 11:38

Hi Harry

You've obviously been doing your research as well. Although I said I was not aware of lower does there must have been Phase II dose finding/efficacy studies before they landed on 75mg/m2. I was told by my oncologist that the dose coukd be reduced by a maximum of 20% which puts it close to your 60mg/m2.

I had my 4th yesterday with what I was told would be a 10% reduction. So far today I feel as fine as I have been on the treatment.

I can vouch that lost toe nails do grow back. I have lost big toe nails through all the running I did over 40 years through the impact on the toe box of my running shoes.

My fingers are crossed for you that all is downhill from now on.

Cheers

Tom

 
Forum Jump  
©2025 Prostate Cancer UK