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The million dollar question

User
Posted 25 Oct 2023 at 11:30

Hopefully tomorrow goes ok Phil nobody deserves a change in luck more than you keep us posted gaz ๐Ÿ‘

User
Posted 25 Oct 2023 at 17:01
Phil Iโ€™m gunning for you ok. I canโ€™t imagine ( but will obviously find out ) how you are feeling. Stay strong and itโ€™s easy to say worrying solves nothing but itโ€™s so true. Iโ€™d be having a few glasses of red ๐Ÿ˜Ž
User
Posted 26 Oct 2023 at 12:21

Hi Phil, only just seen this thread . I don’t come on the forum that often now as I sometimes need a break from thinking about PCa…. 

I really hope you start to get some good news soon. It’s such a s*** journey isn’t it. 
My Onco got me on Abi and it is working, although I have worries about its effectiveness as my PSA is going down quite slowly. Just got to wait and see… 

It’s funny how they measure treatment efficiency with PSA then tell you not to worry about the numbers. Just wish it were that easy to tell your brain …..

One thing I did was decide , with my wife, that I didn’t want to know where my new lesions were as I’d only worry more. I think it was the best move as I don’t worry about every little ache or pain. 

Got everything crossed for you Phil. 

Phil

Edited by member 26 Oct 2023 at 12:26  | Reason: Not specified

User
Posted 26 Oct 2023 at 19:42

Hi guys 

Thanks for all your replies,onco appointment done she was a hour and a half late seeing us but she was the talkative I've seen her,PSA up to 13.5,been tested for oralib but came back negative so that's a no no,she's holding back on chemo because I'm looking so well and my scans say no more progression,so next appointment in 8 weeks,seen off the chemo demons for another 2 months anyway,I'm off to book the canaries for Xmas,stuff it ๐Ÿ˜€ 

Stay well all regards Phil 

User
Posted 26 Oct 2023 at 20:05

Enjoy the holiday Phil you deserve it ๐Ÿ‘

User
Posted 28 Oct 2023 at 21:40
The Canaries sounds like a great idea, Phil. We are just back from the Dordogne again - it rained all week and, when we left yesterday evening, it was snowing!!!!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 15 Nov 2023 at 08:58

Hi all

Update time,well where do I start,had a rough few weeks I've had pains in me back been walking round like a robot,thought id pulled someting,eventually went to docs yesterday,was told its an infection which has made me 1 lung slightly swollen which is pressing on me ribs put on 5 day course of strong antibiotics so hopefully be well for me hospital appointment Sunday morning to have another kidney stone removed,not looking forward to it as I no what to expect but am determined to get as fit as I can for Xmas in the canaries for my wife's sanity.

Stay as well as you can all regards phil

User
Posted 15 Nov 2023 at 11:37

Hi Phil. Hope all goes well with the antibiotics and kidney stone removal. And then you can have a magic time in the canaries at Christmas.

We are off to see friends in Spain tomorrow then in 2 weeks to Jersey for a few days. Back out there again for Christmas and back home for new year. 

Gotta try to make everyday count ๐Ÿ‘

Take care

Phil

User
Posted 15 Nov 2023 at 13:43

All the best Phil with your treatment and enjoy the canaries 

User
Posted 15 Nov 2023 at 21:14

Best wishes to you too, Phil.

You've been through the mill, but you keep going. 

Respect!

Jed See.

User
Posted 17 Nov 2023 at 08:25

Thanks for your response guys much appreciated will keep you updated.

User
Posted 20 Nov 2023 at 13:47

Well another stone out and another stent fitted,a lot of teeth grinding when going to the toilet as you can imagine,hoping to have the stent pulled out tomorrow,that will make me eyes water,mri scan on spine and onco appointment next month,will keep you updated.

Regards Phil 

User
Posted 20 Nov 2023 at 14:43

Good luck with the stones and scans phil

User
Posted 20 Nov 2023 at 15:20
Well done Phil. Best of wishes. Youโ€™re an inspiration mate
User
Posted 20 Nov 2023 at 15:52

Well done Phil. Life is certainly making it difficult for you. Hope the stent removal goes well and also the upcoming scan and consultant appointment.

Please keep us updated. We’re all rooting for you ๐Ÿ‘

Phil

User
Posted 20 Nov 2023 at 19:37

Do your best to keep as many teeth as you can Phil.

 

Good luck mate.

 

Jamie.

User
Posted 20 Nov 2023 at 21:50

Thanks Phil.  You're a fighter - that's for sure.

 Best of luck with all the tests and medical treatments.

Best wishes,

JedSee.

User
Posted 15 Dec 2023 at 08:57

Hi all it's update time.

Firstly I'd like to thank you all for your feedback and support,onco appointment was yesterday PSA has doubled in 6 weeks to 26.4 so the dreaded chemo (docetaxel)will start in 3-4 weeks time,for anybody starting there journey and reading this I got a good 16 months out of enzalutamide and if wasn't for my kidney failure and stones during this period QOL would have been pretty good I'm also not feeling to bad all things considered and am off the Tenerife for Xmas for a great time before treatment starts.

If anybody could give me feedback on experiences on docetaxel it would be much appreciated 

Have the best Xmas you can guys and keep fighting the fight and try to be positive.

Regards Phil 

User
Posted 15 Dec 2023 at 09:55

Hi Phil. So sorry to hear this. I’ve no experience of Docetaxel but as I’m not far behind you I’ll also be interested in others experiences. 
I’ve been on Abi for 6 months and it’s working, albeit very slowly and last result was  same as previous one so I’ve just had an upper body scan and bone scan next week to see what’s going on. ๐Ÿ˜ฌ.
Thank you for your support to myself and others and I hope you can find the inner strength to keep fighting. 
Have a fantastic time in Tenerife and get some much needed sun . 

Thinking of you ๐Ÿ‘

Phil

User
Posted 15 Dec 2023 at 10:13

Hi Phil, hope your chemo treatment goes well for you.  You’ve certainly been through the mill with having kidney failure and stones as well as PCa diagnosis and treatments.  My husband Keith was diagnosed with PCa in September 2019 when he was put on HT Prostap injections, followed by chemo (Docetaxel), as it was suspected the cancer had spread to his right hip.  It turned out this ‘apparently’ was not the case and most probably an old injury. I did document his experience of Docetaxel, It’s a bit longwinded as I was in complete shock at the time of writing.  Following chemo he then had Radiotherapy. To be honest the HT has had more of a lasting impact on him mentally and physically.  Fortunately, following all treatments, his PSA has remained undetectable.  Further PSA test next week and we are keeping our fingers crossed the result remains still undetectable. Always an anxious time.  Keith’s only sibling/Brother passed away in October and this has really ‘knocked him sideways’, and again brings home our vulnerability.  I am busy making plans for holidays next year and we have our family and grandchildren to love and enjoy.

So pleased to hear you are off to Tenerife for Christmas, hope you have a very enjoyable time.  All the best going forward.

Ange x

User
Posted 15 Dec 2023 at 12:12

I had six sessions of Docetaxel last year and wasn’t sick at all. I felt a bit tired in the afternoons and half my hair fell out but it grew back.

I wouldn’t worry about it too much.

User
Posted 15 Dec 2023 at 17:18
Phil youโ€™re a true champion in my eyes and a bit of a stoic hero. I know you must be creased inside. A few of us are steps behind you and watching in interest but with true support and strong wishes. Enjoy your holiday and Xmas and keep in touch. Mucho respect to you brother. Sending strength ok
User
Posted 15 Dec 2023 at 17:52

"Not feeling too bad all things considered" and even just the thought of Tenerife all sound good to me Phil.

Much love my man and warmest festive wishes to you and yours.

 

Jamie.

 

 

User
Posted 15 Dec 2023 at 22:01

Hi Phil,

Sorry to hear the news about the need for further treatment. 

Have a great holiday and hope the treatment goes well in January.

Best wishes,

JedSee.

User
Posted 18 Dec 2023 at 15:07

Keep punching Phil, new treatments / trials coming up, never give up the fight mate!

User
Posted 22 Dec 2023 at 13:29

Hi Phil, just wanted to reiterate that you have made so many good friends on this forum who are all thinking of you.

It’s a difficult journey and sometimes we do feel a bit alone with our feelings. You try to put on a brave face when all you want to do is crawl into a corner and cry. 
All your friends on here understand that and will be sending you love and hugs . 

I just had my last counselling of my 12 sessions and I can tell you there were a few tears. 

Hope you have the most amazing time in Tenerife over Christmas. We’ll all be waiting here when you get back , just don’t gloat over your nice tan… 

Take care

Phil

User
Posted 29 Dec 2023 at 18:56

Hi Phil,

I went went through 6 cycles of docetaxel 2 years ago.  Certainly not fun, but manageable.  Hair loss started after the 2nd cycle.  Not a big deal since I'm bald, but I did have to shave my beard.  Fatigue was worse the week after an infusion.  The  fatigue also compounded during treatment.  Felt quite tired and weak by the end of treatment.  Fortunately, never had nausea.  Did have a loss of appetite, probably because of "metal-mouth".  Makes everything taste metallic for some guys.  My energy level started to come back after a few weeks.  I'm doing ok now.  Have been on Eligard/Lupron and Abiraterone since chemo.  Just one guys experience.

You're going to do fine.  Hope you're enjoying the holidays.  

All the best in 2024!

Ed

 

User
Posted 10 Jan 2024 at 08:42

Hi all

Thanks again for all your info,kind thoughts and support,well the day has come after most of you probably know after being diagnosed in April 22 APC with bone mets PSA 2100 Gleason 4+4 T1M1

Off to hospital this morning to start 1st course of chemo(docetaxel) it doesn't feel real I knew this day would come when I was diagnosed and here it is,and yet my QOL the last month has been pretty good,i will be in touch with updates.

Stay strong guys regards Phil 

User
Posted 10 Jan 2024 at 09:32

Best of luck Phil. Hoping you cope with it well and it does its job. 
thinking of you ๐Ÿ‘

Phil

User
Posted 10 Jan 2024 at 10:05
Best wishes Phil. Stay strong brother ๐Ÿ˜Ž๐Ÿ’ช
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 ๐Ÿ‘

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 ๐Ÿ‘

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

Hi 

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 ๐Ÿคฃ. 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 ๐Ÿ‘

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 hopefully๐Ÿ™ After it you feel quite alone, so joining a support group such as Maggies(here I go again๐Ÿคฃ๐Ÿคฃ) 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 ๐Ÿคท‍โ™‚๏ธ… 

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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