The million dollar question

This really is sad news 😢 I found his story in the early days of rob being diagnosed and watched his documentary and it really helped me see some positives at the time. He tweeted just a few weeks ago that he was returning to classic fm and I took this as a really good sign. Thoughts are with his family. RIP Bill xx

Hi Phil 

Really sorry to hear of your diagnosis but hopefully you will continue to respond to the treatment for a very long time. It appears some oncologists will not give you an estimated prognosis, others just tell you regardless if you want to know, which was the case with my Husband. Whilst extremely difficult for us it did focus us to make some key life changes so we can spend as much time together as possible.

We know it's a lot to adjust to and it can be really difficult emotionally at times but try and stay positive and make plenty time to care for yourself.

All the best with your treatment. X

Edited by member 31 Jul 2022 at 00:04  | Reason: Not specified

Starting my course of Enzalutamide today 4 x 40mg once a day,fingers crossed it keeps a lid on this nasty box for years to come and side effects are not to bad 🤞

Phil i might have missed it but are you still weighing up whether to have RT?

If so, from my own experience i would not hesitate... but of course everyone is different.

Hope your situation continues to improve.

I have no idea scientifically whether the 'if you have the hot flushes the HT is more likely to be working' hypothesis is correct... but in my case, yes, the time when i started to notice them less coincided with PSA creeping up again. So, i would advise you to embrace them if you can :)

And yes, very sad about Bill Turnbull. Very similar story to mine, disease-wise, two years before me... But, who knows what will happen.

Good luck with everything.

GS

Hi all

Will results in from 2nd oncology appointment are in PSA down to 0.502!!!!! from over 2100 that's amazing news bone density looking good,liver and kidney function normal,alas double nephrostomy tubes not coming out yet until ct scans are carried out and results are in,oh well i can understand the oncologist and urologist being cautious in removing them but it's frustrating for me as I feel that I'm peeing more naturally than I have in the last 6 months.

Best wishes to everyone regards Phil 

Hi. Sorry to read your story, I'm in a similar situation,  except my Mets are mainly in bones and I'm  on apalutamide.

Luckily, my PSA levels have stayed at 0.1 for 6 or 7 months now.  However, like you I wondered about a scan just in case. As I was coming up to my first anniversary, I chanced my arm and suggested a scan last week (my back up position was to ask oncologist for a private PSMA Gallium 68 scan).  To my surprise she agreed! So I've got a CT scan booked in near the end of February!  It's a shame you have to take pot luck with oncologist opinions being different across the country.  I think I may have got away with it being a serial awkward type who questions standard protocol! Eg - no chemo yet - why make yourself more ill;  demanding new drug apalutamide; having a bilateral orchidectomy rather than enduring more drugs every 3 months and saying no for time being to 20 doses of radiation therapy to prostate - I can't enjoy life if I'm made incontinent!

My advice, always do your research, ask awkward questions and push for your priorities (mine being quality of life).

Hi all 

Quick update...had flexible cystoscopy to remove kidney stent today,passed that little bugger of a prostrate on way past getting it so I stuck me thumb upto it on the screen and said thanks for nothing,not the best experience I've had having the stent taken out but not as bad as I thought it was going to be,well no excuses now if psa keeps rising next onco appointment in October.

Take care all 

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

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 

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 

My dad was also diagnosed with advanced PC in May 22. He starts Aptalutamide on Wednesday. His oncologist just shrugged his shoulders when my dad asked how long. He said it depends how he responds to hormone treatment but he stressed he wanted my dad to maintain an excellent quality of life and discussed balancing the side effects of treatment and quality of life. Hopefully he will respond well and be around for many years yet. Wishing you well in your journey too.

Edited by member 30 Jul 2022 at 22:31  | Reason: Not specified

Merilyn

Quick update on how the Enzalutimide is working - after one month numbers now down to 0.6. No more fortnightly checks as he’s not displaying any adverse reactions to date. Next check up in a month. Fingers crossed it continues. Hope you are doing well yourself.

Regards

Merilyn

Regards

Merilyn

Such sad news about Bill Turnbull, rocked me this morning 💔 it certainly reminds us how fragile life is. To clarify, you don’t “lose the battle” or “lose the fight” as this implies you didn’t fight hard enough, which is just not the case (these phrases infuriate me!).

Rest in peace Bill.

Re the lymphodema, I have secondary lymphodema in my arm following full lymph node clearance and I was always under the impression that radiotherapy to the area would make things worse. I would seek advice from the lymphodema society, they are very helpful. Hope you’re doing ok Phil. Best wishes x

Edited by member 01 Sep 2022 at 10:18  | Reason: Not specified

I developed lymphoedema in my left leg following RP with removal of 10 nodes in April 2019. My consultant referred me to a lymphoedema nurse who prescribed a pressure stocking which has proved to be very effective and not at all uncomfortable. 

Hi Phil, agree so sorry to hear about Bill Turnbull and heartfelt thoughts to his family at this very sad time. Pleased to hear you are responding well to treatment and long may it continue. Had my latest check up yesterday and my PSA is down to 0.44. It was 74 four when I commenced hormone treatment at the end of March. I'm also on Apalutamide which I've been taking since the beginning of May and am due to commence RT within the next few weeks. Cancer has been found in one lymph node and also a very small amount in my spine (was not picked up on bone scan and only found via PET scan). Getting the hot flushes and constantly using a hand held fan, also feel tired sometimes and my emotions are all over the place. However, I still ride my motor bike, walk my dogs, and gig three to four times a month. Oncologist has not given me a prognosis, but expects years ahead if I continue to respond to treatment and she is very positive. I feel cheated at times as I'm 57. I was able to retire early and wanted to spend so much more time with my wife than I probably will. However, I have a great bunch of mates and my wife is incredible. Life is terminal, and while I may not reach the age I wanted I fully intend to enjoy what I have left to the full. Good luck with your journey!

Money doesn't tend to improve outcomes - famous men who have died of prostate cancer despite treatment include Roger Moore, William Hurt, Bob Monkhouse, Bill Turnbull and olympian Andy Ripley. Andy was a member of this forum and wrote about his treatments, his progress into palliative care and end of life issues. You should still be able to find his threads on here and for a few years, PCUK sold a t-shirt with his by-line on it.

Sadly, being a leading urologist doesn't necessarily protect a man either - a few years ago, four of the top UK urologists were diagnosed with prostate cancer, 3 of them advanced. John Anderson died a couple of months after this film was made. Sean Vesey died in 2015, 4 years after he was diagnosed. Professor Kirby is retired and currently the president of the RSM. I think Damian Hanbury is still practising.

https://www.youtube.com/watch?v=OvmKcsDlOq0 

Hi Michael

Next appointment is with my oncologist in about 7 weeks time,your right there ain't a lot I can do regarding my bloodtest results just gotta keep doing what I'm doing,another quick note I did ask about having a scan to back up the low PSA as some people on this forum say that you cannot go on PSA readings alone,her reply was that there was no need for me to have one as I seemed to be doing so well and scans have there own disadvantages ie radiation,so I could understand where she was coming from.

Regards Phil 

Hi

Thanks for all your messages,My  oncologist rang me back yesterday near the end of the day after catching me on the hope ringing at 8:30 in the morning when my face to face appointment wasn't until 3:20,she put my mind at rest saying it was a very small rise and I'm coming up to 12 months being diagnosed,she likes to forward plan and keep me well using scans PSA readings and how I feel to plan my next step,she explained herself better and spoke on my level,my oncologist can be a bit vague sometimes and you have to drag information from her,but sometimes she can speak on your level and be clearer.       Regards Phil 

Hi Phil, thanks for asking and I don’t want to take over your thread so a quick update.  PSA pushing way up.  I am hoping for Radium 223 but waiting on a scan result.  Otherwise it will be end of road and just management.  QoL is ok just now though I had a Haemoglobin crash and needed a transfusion last week.  My appetite is back now and I am eating again. The transfusion also helped my energy.  I am still mobile, retired from work and still walking.  Had to give up running unfortunately due to precarious bones!  So I am ok Phil, just had an awful aggressive type of this silly disease.  Crossing fingers for you pal and I do hope you get away on holiday ok. 

Cheers Michael 

Edited by member 03 Jun 2023 at 12:54  | Reason: Spelling

Thanks guys

I'm going under in the morning to have stones removed god knows what I'll wake upto but what will be will be,I'm convinced that my rise in psa is all the interventions I've had over the last few months as in uti,nephrostomy bag fitted and removed,kidney stent fitted and tomorrow's op,my oncologist begs to differ but I'll take her comments with a pinch of salt,all she talks is chemo chemo chemo and I'm not giving up on enza just yet with a rise of 0.9 to 2.4 in nearly 3 months when all this stones business all began.

Regards Phil 

Hi all

Take a look at Duran Durans Andy Taylor on BBC Breakfast on u tube from 9 hours ago,I really hope he gets 5 years out of lituem-177 (excuse my spelling if incorrect)

Take care all 

Hi guys

Big oncology appointment tomorrow and to be honest I'm bricking it,I know that after 14months enzalutamide is breaking down and psa is on the rise but scans show no further spread,I'm not a big fan of my oncologist I've never seen her face cause of wearing a mask and she's always looking at the screen,I know she has a difficult job and sees hundreds of people and she only sees me every 3 months but a little more tact would not go a miss,I'm hoping that olaparib is on the table rather than jumping head first into chemo

Will post again in next few days regards Phil 

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 

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   

Hi there 

Tend not to give to many updates on thread but do keep my bio up on profile.

Had 3rd session a couple of days ago,coping well thanks,oncology appointment with PSA results in about 3 weeks should find out more then.

Thanks for getting in touch and good luck with your results,it's a stressful time waiting to see if your PSA is up or down.

Regards Phil