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User

Posted 10 Jan 2024 at 10:35

Hope all goes well for you today Phil and going forward. Keep thinking of your recent lovely holiday in Tenerife and planning your next one! All the best.

Angex

User

Posted 10 Jan 2024 at 11:27

All the best mate, stay as strong as possible

User

Posted 10 Jan 2024 at 11:33

Hi Phil,

all the very best with your chemo. I had six sessions of docetaxel back in 2019, and I was given two very good pieces of advice which worked for me:

1) take a high-dose vitamin B supplement (B6, B12 etc) daily. This can help prevent the docetaxel causing peripheral neuropathy (nerve damage in your hands and feet). I had no tingling / numbness in my hands or feet at any stage of my chemo.

2) suck ice cubes or frozen fruit cubes while you're having the infusion. It really helps to prevent the chemo causing loss of taste.

You will most likely feel hyper from the steroids for a couple of days, then you'll crash and feel listless and knackered as the steroids wear off. That's 100% normal. You'll start to feel better again after another two to three days.

Good luck! Craig

User

Posted 10 Jan 2024 at 12:10

Good luck Phil. Hope all the tips you have on here work and minimise any side effects and maximise your QOL.

User

Posted 30 Jan 2024 at 10:38

Hi Phil. How you doing buddy ?
Hoping you’re feeling ok with the Docetaxel and not so many side effects.
Thinking of you 👍

Phil

User

Posted 31 Jan 2024 at 08:14

Hi all

Thanks for your thoughts and good wishes,start 2nd round of chemo(docetaxel)today 1st round wasn't that bad the 1st week was a bit rough,nausea, constipation and fatigue but week 2 & 3 was pretty good in fact nearly normal,not sure if PSA is still on rise or stable but will ask today at hospital,let's hope the effects from this round are as similar as the last.

Will keep you updated regards Phil

User

Posted 31 Jan 2024 at 14:16

Hi Phil,

Great you are managing ok with the chemo. Let’s hope it does the trick 👍

Take care

Phil

User

Posted 02 Feb 2024 at 16:36

Hello Phil and everyone else who has posted here. I have only recently found this forum. I was diagnosed with advanced prostrate cancer last July. My psa was fairly low from my initial blood test - 9.7. After a biopsy I had a Gallium 60 PSMA PET/CT scan 'just to make sure it has not spread'. The result was not good news 'multiple small bone metastases'. My urologist then gave me 'free transfer' to my oncologist.

Since August/September I have been having 3 monthly Prostap injections and daily Abiraterone and Prednisolone tablets. I had a further scan last month which now shows only mild activity in my prostate and left shoulder. My psa is 0.05. I know the Abi will lose effect at some point - a few more years I hope.

I have insurance for the moment which is paying for the Abi. NHS England will not prescribe Abi as a first treatment, only after chemo. This is not the case in Scotland and Wales where it is available as a first treatment. It is off patent now so I don't think cost is the issue. I take a generic version. My oncologist thinks it is being prescribed privately from Royal Marsden for £250 vs c£2,400 elsewhere. He would happily prescribe it on an NHS prescription if NHS England would allow it. Does anybody on this forum have any knowledge on what is going here? It cannot be right that only insured and those that can afford it have access to Abi as a first treatment and are spared having to have chemo first.

All the best to to everyone with this horrible cancer and especially Phil for providing this so helpful forum

David Rang

User

Posted 03 Feb 2024 at 09:06

Hi Dave

I find it hard to believe that you have been declined Abi on NHS England,I live in the midlands and when I was diagnosed I was offered chemo or enza which I believe is the sister drug to Abi,I chose enza and got a good 18months out of those little tablets,I'm now on my 2nd cycle of chemo (docetaxel) and doing ok,I don't know what you should do next but maybe a second opinion is required.

Regards phil

User

Posted 03 Feb 2024 at 09:52

Hi David,

Have you thought about starting your own thread about this? You are more likely to get answers and it’s helpful to others if you are willing to document your journey.

All the best,

Derek

User

Posted 03 Feb 2024 at 11:09

Hello Derek,

Good suggestion. I will do that.

David

User

Posted 03 Feb 2024 at 12:25

Hi Phil,

I am in North Yorkshire. So far I am being treated partly insurance and partly NHS. My treatment plan was for Abir combined with monthly blood tests and radiotherapy with further PSMA scans as and when. We did not discuss life after Abir, the hope is it will remain effective for a good few years. NHS England, although allowing Enza as a first treatment will not authorise Abir until after chemo - bizarre! I asked what would happen if I could not afford my insurance renewal and therefore could not pay for Abir. He said he would switch me to Enza. I'm nervous of changing horses mid-race like this, hence my appeal for anyone else with experience of Abir as a first treatment in England.

I will take up Derek's suggestion and start a new thread on this topic. I wish you well and will stay with you on this thread.

David

User

Posted 04 Feb 2024 at 18:25

I am on Abi and not had chemo yet .

Phil

User

Posted 05 Feb 2024 at 08:40

I'm led to believe there is a small window of opportunity to switch from Abi to enza and viza verza if one is not working,I think it is a couple of months.

Regards Phil

User

Posted 05 Feb 2024 at 11:33

Hello Phils,

My oncologist is adamant he cannot prescribe Abir on NHS England as a first treatment. I also read somewhere that NICE will not authorise it as a first treatment as their original approval was for use after chemo. They have said they will review whether to approve as a first treatment some time this year.....

I saw your chronology Phil (Goalhanger). Perhaps your case is different given your extensive history

All the best

David.

User

Posted 05 Feb 2024 at 11:48

I saw your chronology Phil (Goalhanger). Perhaps your case is different given your extensive history

David, To be honest I never even asked about the possibility of NHS not paying for it. My consultant just said I’m putting you on Abi.
It is not working brilliantly as my Prostap did 6 years ago but my cancer is G9 so it probably means it mutates and changes more rapidly so giving the drugs a harder time. But as Phil says I’m too late to try anything else now. Just Docetaxel waiting in the wings.
My consultant has been switching the backup HT from Zoladex to Prostap and back again to try to get a reaction . Also changing the steroids around. Just re-started on Dexamethasone hoping that will kick start some reaction.

Take care

Phil

Edited by member 05 Feb 2024 at 12:07 | Reason: Not specified

User

Posted 05 Feb 2024 at 11:58

Hi Phil,

This is such a steep learning curve. I am grateful for all the posts helping enlighten me. My next step is radiotherapy, probably in March.

David

User

Posted 05 Feb 2024 at 12:06

David, I had Radiotherapy in 2018 and it was a breeze. The worst bit was having to be full of water. I’m lucky if I got desperate I could release a cup full or two to ease the pressure 🤣. You might want to practice that before you go as sometimes there is a delay and you are over full….
Weird when you finish as you ring the bell to signify the end of treatment and you can feel a little bit abandoned as you get to know the team over the weeks and suddenly it’s over. My team were so lovely.
Very best of luck for your radiotherapy and we’re all hoping it does the trick for you 👍

Phil

User

Posted 05 Feb 2024 at 12:16

I know what Phil means, I didn’t even have a bell to ring when I finished RT at the Western in Edinburgh. I really don’t know why as it would have meant a lot to me…a turning point hopefully🙏 After it you feel quite alone, so joining a support group such as Maggies(here I go again🤣🤣) can be very beneficial.

RT was a breeze for me too, staff are wonderful and so understanding so please don’t worry about it David, you will soon get into a routine. I would start doing Pelvic Floor Exercises as it will help you control your bladder during and after treatment and just keep as active and fit as you are able. Whatever your treatment is I think this is so important. David, you were going to start your own thread but I don’t think I have seen it…you’re always a bit anxious posting your first one but you’ll only find understanding and support from the members on here, and it’s very useful for others who can follow your journey.

Good Luck,

Derek

User

Posted 08 Feb 2024 at 11:33

I just looked the locations of the Maggies and there are none near me unfortunately.
I’ve used up my allowance of free NHS counselling so I’m on my own now.
My counsellor did say that if I get changes in my cancer situation then they could do one off counselling. I think she was trying to tell me that I couldn’t get more if I just felt worse but if I had a change in the cancer I could 🤷‍♂️…

I wonder if my hospital (Southend) have any McMillan or other PCa meet ups ? I might ask.

Cheers , take care

Phil

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