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The million dollar question

User
Posted 30 Jul 2022 at 16:54

Hi 

I have recently been diagnosed with advanced prostate cancer and would like to hear of other guys journeys and what I've got to expect and would be grateful of any advice that you could give and a big question of mine is yes you guessed it how long have I got????I know its the million dollar question but I have to ask.

Regards 

User
Posted 01 Sep 2022 at 09:19

Hi all 

Heard some bad news this morning that the BBC news presenter Bill Turnbull has died at the age of 63 of advanced prostrate cancer after a 5 year battle.

I followed his story closely as it is the same condition I have,I think we are all in agreement sending his family warm wishes 🙏 at this sad time,its knocked me back a step to be honest,I know everybody's story is different but the nasty stuff is in us ready to take us down when it gets its chance.

Rest in peace Bill

User
Posted 01 Sep 2022 at 09:28

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

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 😀 

Stay well all regards Phil 

User
Posted 31 Jul 2022 at 00:03

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

User
Posted 06 Aug 2022 at 08:27

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 🤞

User
Posted 29 Aug 2022 at 11:25
Hi Phil, wouldn’t it be good if we could put a chain around the box and lose the key so it could never be opened!

Merilyn

User
Posted 01 Sep 2022 at 11:55

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

User
Posted 01 Sep 2022 at 17:55

Totally with you Cole 

Lucky enough to have critical illness on my mortgage so hopefully will cash in on that,had the green light to finish work on highest tier possible so pension will pay up as if I was 67.

And so they should my life has been fast forwarded 10/15/20 years and all of me and my wife's plans have been whiped out!!!so I'm going to make the best thing outta this bad bad situation get some money in the bank and have a dam good time spending it 

Good luck with your journey

User
Posted 22 Sep 2022 at 19:02

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 

User
Posted 20 Nov 2022 at 09:34

Good news Cole,keep on rocking 😎 and thanks for best wishes gaz & Elaine.

User
Posted 03 Jul 2023 at 19:36

Hi all

Thanks for your replies,latest update on todays oncology appointment which was 1 hour late she was on the phone 9m8sec and virtually put the phone down on me,PSA has not surprisingly gone up again to 3.23 that's a rise 3 months in a row but that co-insides with diagnosed with stones nephrostomy tube fitted and removed,kidney stent fitted removed and re-fitted,stones removed and cafitier fitted and removed,antibiotics painkillers and other meds,oh and a bout of covid in-between  all I hope attributing to the the rise,my oncologist is willing to give me a few more months for stent to be removed on Friday then I can  put the whole kidney stone fiasco behind me and monitor for now,great ain't it living your life month by month.

Take care all regards phil

User
Posted 07 Jul 2023 at 15:58

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 

User
Posted 31 Jul 2023 at 12:04

Hi all 

Latest update it's another PSA rise unfortunately to 4.06 but rise has decreased so I'm still clinginging to the hope that interventions that have been carried out due to stones being removed,cafitier being fitted/removed and kidney stent removel 3 weeks ago has contributed to the rise,I have mri scans,bone x-rays and ultrasounds booked in the following month so the proof will be in the pudding.

Oh the joys 

Stay as well as you can all regards phil

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 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 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 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 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 30 Jul 2022 at 16:54

Hi 

I have recently been diagnosed with advanced prostate cancer and would like to hear of other guys journeys and what I've got to expect and would be grateful of any advice that you could give and a big question of mine is yes you guessed it how long have I got????I know its the million dollar question but I have to ask.

Regards 

User
Posted 30 Jul 2022 at 22:30

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

User
Posted 31 Jul 2022 at 10:01
NHS data would suggest that you have 3 to 5 years but some of the recent treatment innovations mean that in reality, you should be aiming for 10 years or more. There are many variables though - a small number of lymph nodes or extensive lymph nodes? Which bones? Outcomes for men with mets in the skull or jaw tend to be poor in comparison to mets in the hips / pelvis
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 31 Jul 2022 at 12:40

Hi

To be honest I'm not sure with how many nodes and looking at the x rays of me at my first oncology appointment a few weeks ago it's seems to have spread as far as the shoulder blades and something was said about a small showing in my lungs,I know I should ask more questions at these consultations and I will at the next one,the oncologist I have was nice but I felt very rushed as if I were on a conveyer belt and she needed to see so many people.But I have responded well to first treatment and most of my aches have died down let's hope it continues,emotionally it can be a struggle sometimes,my next hurdle in the coming month is if I'm able to finish work on ill health and enjoy life a bit and concentrate on keeping myself as fit and healthy as I can,let's hope I'm able too.

Thanks for your all for your comments and support.

 

User
Posted 06 Aug 2022 at 15:12
Sorry can’t help with any info re your lymphedema but hope the info is of some help re the Enzalutimide. My other half started Enzalutimide 3 weeks ago. Like you, 4 tablets a day, taken at bedtime. His numbers after the first two weeks were down to 0.85. Fingers crossed, up to now his side effects have been hot sweats (which he was having previously when on bicalutamide) and nodding off quite often during the day, but like the hot sweats, he was beforehand. His first 2 week check up showed no problems with the meds effecting his BP or kidneys, liver etc. His onco is checking him every two weeks for a period of 8 weeks. He’s in a much more positive state of mind and looking forward to visiting our daughter in Australia next month.

Merilyn

User
Posted 06 Aug 2022 at 21:25
Hi Phil, Rob is now a young 74! He was diagnosed in 2018. T3bN1M1, Gleason 4+3. Baseline PSA 44. Nodal and bone metastases (pelvis)

He was entered into Stampede study and randomised to oestrogen patches.

In October 2018 he completed docetaxel chemo x6. The metastases in his pelvis was not visible after An MRI scan when chemo finished but he was told that wasn’t to say it had gone, just not visible on the MRI, but we still took it as a positive.

His PSA was stable in September 2020 at 0.16 and continued with the patches but By December 2020 after being on the patches for 2+ years with excellent results he had to stop them because of skin toxicity

He was switched to 3 monthly LHRH Analogues. His PSA at that stage was 0.36,

January 2021, 0.48,

February 2021 0.57,

May 2021 0.66

August 2021 0.93 (then was put on bicalutamide 50mg.

May 2022 further rise to 1.35.

Whole body MRI in June 2022 revealed progressive disease in the prostate and 11mm in the supraclavicular lymph node plus tiny bilateral pleural effusions. It was then decided to stop the bicalutamide and commence Enzalutamide which as mentioned before has brought his PSA numbers back down to 0.85.

He is really upbeat, feeling very positive, in fact has been picking up the paint brush and doing some decorating. I think this is because of the effect the Enzalutimide has had.

Regards

Merilyn

User
Posted 14 Aug 2022 at 12:03
Hi Phil

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

User
Posted 17 Aug 2022 at 21:32

Well it's been an important few days,I've had my nephrostomy tubes changed because they've been in for over 3 months,hopefully this will be the last time and enzalutamide and prostap 3 injections are doing there job and work has give me the green light for early retirement on ill health at the age of 53!!!scary but I can now concentrate on me being as fit and healthy as I can with me and my wife being financially secure.

User
Posted 28 Aug 2022 at 21:47
Good news Phil long may it continue. Robs hot flushes are quite intense but less frequent than when on bicalutamide and his restless legs have returned, but like you the Enzalutimide is working so you put up with them.

Regards

Merilyn

User
Posted 01 Sep 2022 at 10:00

Like you, it did come as a blow to hear this news this morning.  He seemed a lovely man.  

Take care Phil and have the best day possible 

Cheers 

Michael 

User
Posted 01 Sep 2022 at 10:03

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

User
Posted 01 Sep 2022 at 11:50

Phil, thanks for your message. It won't let me respond privately to you because I don't post enough publicly, but yes mate, very similar it seems.

I was in your exact shoes 9 months ago, myself and my family devastated and despite not asking for a prognosis / outlook, my Onco gave me one anyway!

This was after the battery of scans and 1st hormone injection, but before my first PSA result after starting the Hormone injection therapy. He told me in every circumstance he could keep me alive for at least a year, if my treatments didn't go well then 2-3 years and if everything went well then i might have 4.5 - 5 years and followed that up in a letter, just so I was absolutely sure that I heard what I didn't ask to hear.

Thankfully my treatment has gone exceptionally well, to such an extent that my brain is now telling me "this is not right, you are not dying", although sadly I know I am!

I control the physical feelings (can't really call it pain) with maybe 4 painkillers a day and often I just take them to maintain the routine as I'm in no pain whatsoever. I have hot flushes each night from 6pm due to the Enza tablets which makes me socially inept, and I like to be near a toilet at all times due to the excessive pee-ing, but it's a small price to pay.

My hope is that I can stay feeling well for the full 5 years if not longer, and in the meanwhile some other treatment becomes available that they can insert into the plan which can add a few more years and get me to 10 years - remember the likes of Enzalutamide and Aptilutamide were not around so very long ago, so I am hopeful something else might be discovered / created to keep all us sufferers alive a bit longer.

I haven't missed a day's work yet, I'm dead active due to my involvement with semi-professional football and can start taking some of my pension next February.

Even if I can get to 10 years, then I would still be a very young 64 years old - not fair - but people drop dead or are killed every second of every day all over the world without having the chance to enjoy 5 years or whatever with their family & friends and to plan for the the future financially, so I am grateful for that small mercy.

Message me privately again whenever you like mate, and I'll get back to you. There aren't many of us younger fellas in the PCa category, so always feel free to talk.

 

 

  

User
Posted 01 Sep 2022 at 11:56

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. 

User
Posted 01 Sep 2022 at 12:32

Spot on mate, good luck with that, thankfully all of my organs were working 100% upon diagnosis, so again thankful for a small mercy.

Meanwhile, am grateful for whatever time i've got left and trying to enjoy life. Since diagnosis have been to Tenerife, Lisbon and Paris (all places I haven't been before) and we plan on doing a few more as well (ibiza shortly) and once the pension comes in, I hope to head to California for one of those road trip thingios up the coast.

We are young men still, basically fit and healthy.

My onco said I have an aggressive cancer to which I replied "it hasn't come up against me yet though" - big talk and probably futile, but I'm aggressive when needed and intend to fight every step of the way.

User
Posted 01 Sep 2022 at 17:41

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!

 

User
Posted 11 Nov 2022 at 18:17

Hi all

Hope you are all doing the best you can and being the best you can be.

Is it right the news I'm hearing today that Andy Taylor from Duran Duran has been diagnosed with stage 4 prostrate cancer?

I shall be monitoring his progress to see if money can buy you more time.

Stay strong everyone 💪 and keep fighting the fight.

User
Posted 11 Nov 2022 at 21:52

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 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 03 Dec 2022 at 18:24

Hey Phil,

I have been following your brilliantly documneted story thus far mate, Whilst you and I have vastly different outcomes, I am obviously more fortunate than you and so perhaps my opinion may sound almost hollow, I hope not.

In the past you have said "hot flushes? Bring them on!" and that although your life has been fast forward 10 or maybe 20 years, you have been determined to make the most. Thats an attitude that I think is at the heart of who you are as a person. I may not know you, but im pretty confident that this is pretty accurate. I guess what i am trying to say is that I think you are a stronger soul than you may give yourself credit for. Why? Easy, you are the selfless type to try and make sure anyone reading your story feels better about their tomorrow. 

Try not to think longevity my man. None of us have that regardless.

 

Jamie

User
Posted 27 Jan 2023 at 08:48

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 

User
Posted 29 Jan 2023 at 22:37

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).

 

 

User
Posted 02 Feb 2023 at 18:36
I had RT/HT, 37 sessions of RT and 3 yrs Zoladex. Obviously bearing in mind Zoladex causes emotional problems anyway.

I was also in a trial that included 2 yrs enzalutimide&abiraterone plus steroids so I may have had three helpings of emotional problem I inducing treatment, I certainly had emotional problems, depression - I'd often just start crying for no obvious reason, I could be walking, driving, having a shower, reading, in gym etc. I'm not prone to depression, anxiety etc but certainly suffered from that. I was prescribed antidepressants (gp really understanding)&they really helped, once time allowed to get into system. Think I had them for 12 months. All good now.

Peter

User
Posted 10 Mar 2023 at 09:31

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 

User
Posted 21 Apr 2023 at 08:55

Hi all

Just a quick update,due to kidney stones and drop in kidney function,single nephrostomy tube fitted and awaiting stent to be fitted,enzalutamide was suspended and in 1 week PSA rose from 0.9 to 1.4!!saying that oncology team were not surprised with rise and not concerned resume tablets today and awaiting appointment for stent to be fitted.

Regards Phil 

User
Posted 03 Jun 2023 at 12:53

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

User
Posted 07 Jun 2023 at 19:06

Evening all

Just had nephrostomy tube removed and kidney stent fitted until removal of stones,wow what an experience that was felt like he pushing the pipe in my kidney and out of my penis,just had my first couple of wees and what an experience that is as well,the nurse on the ward explained it as a tooth brush being pushed down your urethra and I certainly agree with her there,hopefully the sensations will pass over time.

Take care all regards Phil 

User
Posted 23 Jun 2023 at 14:51

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 

User
Posted 01 Aug 2023 at 21:54

Thanks both for your support 

Regards Phil 

User
Posted 11 Aug 2023 at 21:50

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 

User
Posted 13 Aug 2023 at 13:26

Thanks for the come back yarris,next bloodtest in a couple of weeks,will have no excuses then,I wonder when my oncologist will pull the plug on enza,there will be no going back then,would have been on enza for 11months was hoping to get a couple of years out of the tablets,but we will see what the bloods say in 2 weeks.

Regards Phil 

User
Posted 25 Oct 2023 at 09:02

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 

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 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 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 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

User
Posted 23 Feb 2024 at 07:38

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 

 

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User
Posted 30 Jul 2022 at 20:50

Sorry to read of your diagnosis Phil.

Have you had another PSA test since starting hormone treatment? My understanding is that if you respond well to the treatment then who knows. Many men seem to be around for a very long time even with difficult diagnosis. Keep positive, keep fit and healthy and as difficult as it can sometimes feel….get on with and enjoy life as much as you can. Wishing you all the very best 

User
Posted 30 Jul 2022 at 21:15

Hi 

My latest PSA was 3.5 had my 1st prostap injection last week and hopefully going on Enzalutamide tablets in next week or so 

User
Posted 30 Jul 2022 at 21:18

Am I reading it right that your initial PSA was over 2000?? If so that seems an amazing start. Sorry if I’ve got that wrong 

User
Posted 30 Jul 2022 at 22:30

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

User
Posted 31 Jul 2022 at 00:03

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

User
Posted 31 Jul 2022 at 10:01
NHS data would suggest that you have 3 to 5 years but some of the recent treatment innovations mean that in reality, you should be aiming for 10 years or more. There are many variables though - a small number of lymph nodes or extensive lymph nodes? Which bones? Outcomes for men with mets in the skull or jaw tend to be poor in comparison to mets in the hips / pelvis
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 31 Jul 2022 at 12:40

Hi

To be honest I'm not sure with how many nodes and looking at the x rays of me at my first oncology appointment a few weeks ago it's seems to have spread as far as the shoulder blades and something was said about a small showing in my lungs,I know I should ask more questions at these consultations and I will at the next one,the oncologist I have was nice but I felt very rushed as if I were on a conveyer belt and she needed to see so many people.But I have responded well to first treatment and most of my aches have died down let's hope it continues,emotionally it can be a struggle sometimes,my next hurdle in the coming month is if I'm able to finish work on ill health and enjoy life a bit and concentrate on keeping myself as fit and healthy as I can,let's hope I'm able too.

Thanks for your all for your comments and support.

 

User
Posted 02 Aug 2022 at 19:43

Hi 

Wife and myself are having our ups and downs,nurses are being good and are offering help if needed but at mo we are managing between us.its really early days for my journey but my latest blood test results are looking good my PSA has dropped again to 2.6,bones are improving and kidneys are doing well 😊 long may in continue.

 

User
Posted 02 Aug 2022 at 20:23

Well you are responding well to the treatment. You just have to get on with enjoying your life.

Dave

User
Posted 06 Aug 2022 at 08:27

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 🤞

User
Posted 06 Aug 2022 at 12:33

Hi all

Have lymphedema in my right leg due to swollen lymph nodes in groin,condition is not as bad as it was before I started treatment but as the day goes on my leg does get bigger,my oncologist has offered radiotherapy to groin area to reduce swelling in nodes I'm 50/50 as to if I should take the offer up,I can cope with the leg but if the offers there should I take it?what will be the side effect of it?Will it do more harm than good?

Any advise will be welcome guys

User
Posted 06 Aug 2022 at 15:12
Sorry can’t help with any info re your lymphedema but hope the info is of some help re the Enzalutimide. My other half started Enzalutimide 3 weeks ago. Like you, 4 tablets a day, taken at bedtime. His numbers after the first two weeks were down to 0.85. Fingers crossed, up to now his side effects have been hot sweats (which he was having previously when on bicalutamide) and nodding off quite often during the day, but like the hot sweats, he was beforehand. His first 2 week check up showed no problems with the meds effecting his BP or kidneys, liver etc. His onco is checking him every two weeks for a period of 8 weeks. He’s in a much more positive state of mind and looking forward to visiting our daughter in Australia next month.

Merilyn

User
Posted 06 Aug 2022 at 20:54

Hi

Thanks for the feedback,yes I also am experiencing the hot flushes and the occasional nodding off like the Bicalutamide tablets and pervious hormone injections and I'll be grateful if this continues,it looks like we are both starting our journey at the same time and hopefully it will be a long one,may I ask Merilyn how old your partner is and his frame of mind at mo?

Regards Phil 

User
Posted 06 Aug 2022 at 21:25
Hi Phil, Rob is now a young 74! He was diagnosed in 2018. T3bN1M1, Gleason 4+3. Baseline PSA 44. Nodal and bone metastases (pelvis)

He was entered into Stampede study and randomised to oestrogen patches.

In October 2018 he completed docetaxel chemo x6. The metastases in his pelvis was not visible after An MRI scan when chemo finished but he was told that wasn’t to say it had gone, just not visible on the MRI, but we still took it as a positive.

His PSA was stable in September 2020 at 0.16 and continued with the patches but By December 2020 after being on the patches for 2+ years with excellent results he had to stop them because of skin toxicity

He was switched to 3 monthly LHRH Analogues. His PSA at that stage was 0.36,

January 2021, 0.48,

February 2021 0.57,

May 2021 0.66

August 2021 0.93 (then was put on bicalutamide 50mg.

May 2022 further rise to 1.35.

Whole body MRI in June 2022 revealed progressive disease in the prostate and 11mm in the supraclavicular lymph node plus tiny bilateral pleural effusions. It was then decided to stop the bicalutamide and commence Enzalutamide which as mentioned before has brought his PSA numbers back down to 0.85.

He is really upbeat, feeling very positive, in fact has been picking up the paint brush and doing some decorating. I think this is because of the effect the Enzalutimide has had.

Regards

Merilyn

User
Posted 07 Aug 2022 at 11:24

Great news that he's feeling upbeat and positive Merilyn and long may it continue and tell him when he gets chance my facia needs a lick of paint!!

Take care both 

User
Posted 14 Aug 2022 at 12:03
Hi Phil

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

User
Posted 14 Aug 2022 at 14:18

That's great to hear I'll have an update in next few weeks on my next bloodtest which I will post on here hopefully it will be good news👍

User
Posted 17 Aug 2022 at 21:32

Well it's been an important few days,I've had my nephrostomy tubes changed because they've been in for over 3 months,hopefully this will be the last time and enzalutamide and prostap 3 injections are doing there job and work has give me the green light for early retirement on ill health at the age of 53!!!scary but I can now concentrate on me being as fit and healthy as I can with me and my wife being financially secure.

User
Posted 17 Aug 2022 at 23:10
👍 good news - onwards and upwards!
User
Posted 28 Aug 2022 at 09:10

Hi all

Latest bloodtests results have come in PSA down to 1.9 kidneys stable at 70%,looks like the Enzalutamide is doing its job,if only if I could get the double nephrostomy tubes outta me.

Only feeling I get are side effects of treatment which I'll put up with ie hotflushes,some tiredness and bone aches now and again also the discomforts that come with these tubes ie sleeping,bathing,exercising which are holding me back.

Hope everyone are keeping as well as they can and I will keep you updated of further progress.

Regards Phil 

User
Posted 28 Aug 2022 at 21:47
Good news Phil long may it continue. Robs hot flushes are quite intense but less frequent than when on bicalutamide and his restless legs have returned, but like you the Enzalutimide is working so you put up with them.

Regards

Merilyn

User
Posted 28 Aug 2022 at 22:45

Hi Merilyn 

I'm under the impression the more side effects you have the more the treatment is working and keeping a lid on this nasty box 📦 so bring it on.

Keep strong 💪 regards Phil 

User
Posted 29 Aug 2022 at 11:25
Hi Phil, wouldn’t it be good if we could put a chain around the box and lose the key so it could never be opened!

Merilyn

User
Posted 01 Sep 2022 at 09:19

Hi all 

Heard some bad news this morning that the BBC news presenter Bill Turnbull has died at the age of 63 of advanced prostrate cancer after a 5 year battle.

I followed his story closely as it is the same condition I have,I think we are all in agreement sending his family warm wishes 🙏 at this sad time,its knocked me back a step to be honest,I know everybody's story is different but the nasty stuff is in us ready to take us down when it gets its chance.

Rest in peace Bill

User
Posted 01 Sep 2022 at 09:28

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

User
Posted 01 Sep 2022 at 09:33

Bill was 66 . He fought a good fight……

User
Posted 01 Sep 2022 at 09:46

My apologies he was 66

User
Posted 01 Sep 2022 at 10:00

Like you, it did come as a blow to hear this news this morning.  He seemed a lovely man.  

Take care Phil and have the best day possible 

Cheers 

Michael 

User
Posted 01 Sep 2022 at 10:02

I was also following his story, I hadn’t heard that news so sad, I only read the other day he was back doing his radio show so thought things were going ok, condolences to family xx

ann

User
Posted 01 Sep 2022 at 10:03

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

User
Posted 01 Sep 2022 at 11:50

Phil, thanks for your message. It won't let me respond privately to you because I don't post enough publicly, but yes mate, very similar it seems.

I was in your exact shoes 9 months ago, myself and my family devastated and despite not asking for a prognosis / outlook, my Onco gave me one anyway!

This was after the battery of scans and 1st hormone injection, but before my first PSA result after starting the Hormone injection therapy. He told me in every circumstance he could keep me alive for at least a year, if my treatments didn't go well then 2-3 years and if everything went well then i might have 4.5 - 5 years and followed that up in a letter, just so I was absolutely sure that I heard what I didn't ask to hear.

Thankfully my treatment has gone exceptionally well, to such an extent that my brain is now telling me "this is not right, you are not dying", although sadly I know I am!

I control the physical feelings (can't really call it pain) with maybe 4 painkillers a day and often I just take them to maintain the routine as I'm in no pain whatsoever. I have hot flushes each night from 6pm due to the Enza tablets which makes me socially inept, and I like to be near a toilet at all times due to the excessive pee-ing, but it's a small price to pay.

My hope is that I can stay feeling well for the full 5 years if not longer, and in the meanwhile some other treatment becomes available that they can insert into the plan which can add a few more years and get me to 10 years - remember the likes of Enzalutamide and Aptilutamide were not around so very long ago, so I am hopeful something else might be discovered / created to keep all us sufferers alive a bit longer.

I haven't missed a day's work yet, I'm dead active due to my involvement with semi-professional football and can start taking some of my pension next February.

Even if I can get to 10 years, then I would still be a very young 64 years old - not fair - but people drop dead or are killed every second of every day all over the world without having the chance to enjoy 5 years or whatever with their family & friends and to plan for the the future financially, so I am grateful for that small mercy.

Message me privately again whenever you like mate, and I'll get back to you. There aren't many of us younger fellas in the PCa category, so always feel free to talk.

 

 

  

User
Posted 01 Sep 2022 at 11:55

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

User
Posted 01 Sep 2022 at 11:56

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. 

User
Posted 01 Sep 2022 at 12:25

Hi

Am putting RT to groin on hold for now,I feel the leg is getting slightly better,in the last few weeks im also starting to pee naturally rather than filling the 2 bags I have,so when I go to loo at moment I'm emptying bags and peeing!!!which is great in a way because I feel the enzalutamide is doing its job,hot flushes yeah I have loads BRING THEM ON 👍

User
Posted 01 Sep 2022 at 12:32

Spot on mate, good luck with that, thankfully all of my organs were working 100% upon diagnosis, so again thankful for a small mercy.

Meanwhile, am grateful for whatever time i've got left and trying to enjoy life. Since diagnosis have been to Tenerife, Lisbon and Paris (all places I haven't been before) and we plan on doing a few more as well (ibiza shortly) and once the pension comes in, I hope to head to California for one of those road trip thingios up the coast.

We are young men still, basically fit and healthy.

My onco said I have an aggressive cancer to which I replied "it hasn't come up against me yet though" - big talk and probably futile, but I'm aggressive when needed and intend to fight every step of the way.

User
Posted 01 Sep 2022 at 17:41

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!

 

User
Posted 01 Sep 2022 at 17:55

Totally with you Cole 

Lucky enough to have critical illness on my mortgage so hopefully will cash in on that,had the green light to finish work on highest tier possible so pension will pay up as if I was 67.

And so they should my life has been fast forwarded 10/15/20 years and all of me and my wife's plans have been whiped out!!!so I'm going to make the best thing outta this bad bad situation get some money in the bank and have a dam good time spending it 

Good luck with your journey

User
Posted 06 Sep 2022 at 13:45

Hi all

I feel like this enzalutamide is really starting to kick in now coming into my fifth week,even tho I feel my peeing is getting back to normality ie getting up twice in the night and not filling my double nephrostomy bags up as much,I'm also staring to feel more lethargic as the day progresses even doing the mundane of tasks if this relates to anyone,I'm also having aches and pains in the bones I reliese that my cancer has spread to my bones ie shoulder blades but I'm hoping that the aches I'm experiencing are side effects from the treatment not the cancer itself,time will tell next blood test and onco appointment Sept 22nd so fingers crossed for then.

Regards Phil

User
Posted 06 Sep 2022 at 13:49
Hey Phil

Glad it’s getting better. Thanks for the update. Good luck on bloods and all the rest.

GS

User
Posted 06 Sep 2022 at 13:58
Hi Phil,

Hope all continues in a positive manner. A positive attitude helps, although we sometimes have to give in to the low moods as they are often related to the hormone treatment. You ever need a chat PM me.

All the very best

Cole.

User
Posted 22 Sep 2022 at 19:02

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 

User
Posted 23 Sep 2022 at 06:09
Excellent news. Such a boost isn’t it! Rob had his latest PSA about 10 days ago and like you his numbers are dropping well.

Latest is .52.

We landed in Aus today with two boxes of Enzalutimide in tow. He’s still upbeat but even more so now we are visiting our daughter for a nice long holiday. The Enzalutimide has made such a difference to him, long may it continue to do the business, for you also.

Merilyn

User
Posted 23 Sep 2022 at 09:25

That’s great news Phil.

Ido4

User
Posted 23 Sep 2022 at 09:51
That's a brilliant response to the HT!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 27 Sep 2022 at 09:49

Brilliant fall in PSA Phil hope you are doing well. Mine is a bit more stubborn but I’ll get there too at some point I hope. Take care 

User
Posted 27 Sep 2022 at 11:45

Really great news Phil, so glad you are responding so well to treatment 👍

User
Posted 27 Sep 2022 at 19:30

Hi all

Thanks for all your messages of support.

Could anybody recommend a good travel insurance provider for metastatic prostrate cancer?I contacted my provider who is linked to my bank and surprise surprise they won't cover,they have told me of a website called moneyhelper and I also rang Mcmillan and they mentioned the same people,I'm hoping to get away a few times next year so any input would be helpful.

Regards Phil

User
Posted 27 Sep 2022 at 22:53

Hi Phil have you tried Insurewith dot com.  They seem ok. I suspect with your diagnosis the will want to speak to you once you do the screening questions.  Worth a try 

Cheers

Michael 

User
Posted 11 Oct 2022 at 16:04

10th October 2022 latest CT scan no lymph node involvement,looks like enzalutamide has put the lid on the box for now on the flip side 10 weeks in to enza I feel more side effects (hot flushes to die for during the night,feel more fatigue)also bone ache to shoulders and neck but I'll pay that price for the lid to be shut.

 
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