The million dollar question

User

Posted 11 Oct 2022 at 17:59

Great news. My PSA is down to. 47.However like you the hot flushes can be off the scale. On a positive note saves on the heating bills in these tough economic times. Keep on fighting!

User

Posted 18 Oct 2022 at 19:27

Hi all

Great news with the PSA count Cole may it continue,good news for me today after over 5 months with pipes coming out me kidneys they have now been removed but the burning feeling when I pee is a bit to bare,hopefully it's a 24/48hr thing and it will pass if anybody has any experience please let me know,had a blood test today so will let you know of latest PSA reading when I know in a few days.

Stay strong everyone and kee on fighting 💪

User

Posted 21 Oct 2022 at 17:02

Hi Phil, I think you mentioned shoulder aches, I've had them for a few years now I believe it's part of the cancer. something that helps me is getting the wife to massage my shoulders, spine and lower ribs, with a heat rub it does give me relief, just for a laugh one day we tried cannabis cream, another day we tried baby oil and to our surprise it didn't matter what we used so it must be the massage that does the job?
Hope this helps
airy

User

Posted 21 Oct 2022 at 18:03

good news Phil glad things are better good luck going forward 👍

User

Posted 21 Oct 2022 at 18:09

Many thanks for the suggestion I will give it a try,my wife did do it before diagnosis and it did help and it did cross my mind.

While I'm on latest bloodtest is no change across the board so PSA 0.5 also had my 2nd 3 monthly prostap injection.

I'd also like to put out there my issue with peeing every say 2hrs since I've had my nephrostomy tubes out a few days ago,I'm trying a few things like only drinking water before and during mealtime and not drinking after 8pm,any feedback on this would be helpful.

Cheers Phil and all stay strong 💪

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 18:25

Yes it's correct I'm afraid. It was said he was receiving ground breaking treatment. However a recent set back had prevented his attendance at the induction of Duran Duran in the Rock n Roll Hall of Fame.

User

Posted 11 Nov 2022 at 20:16

good to hear from you Phil glad you are doing ok seen where Andy is having treatment hope he and everyone else can keep battling away good luck to all battling this awful desease 👍 gaz

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 12 Nov 2022 at 22:41

Hi Phil

You recently sent me private message, apologies for not replying, unfortunately the private message function is not available to me because I have not yet participated in a sufficient number of public discussions. I have contacted the system administrator however they are unable to override.

regards

Joaquín

User

Posted 18 Nov 2022 at 17:37

Hi all

Hope you are all doing well.

Update new from 3rd 3 monthly oncology appointment PSA down again from 0.5 to 0.478 excellent partial response with significant reduction in the pelvic side-wall adenopathy,individual conglomerate mass of lymph nodes now measure 11mm previously to 25mm in short axis dimensions,the improvement extends superiorly towards the retroperitoneum.

Normal appearance of the solid abdominal organs aside from a tiny cyst on the liver,no thoracic adenopathy no concerning lung parenchymal features.

So all in all not a bad day at the office,alas the view of my oncologist has not changed ,40mins late called in then rushed out with questions write down but wasn't asked,if only I could get rid of the nausea feeling I get I would be ok,but I have got stage 4 cancer so I suppose I have to expect such things.

Stay strong 💪 everyone and keep fighting the fight.

User

Posted 18 Nov 2022 at 22:05

Sounds great news Phil, really pleased for you and long may it continue 👍

User

Posted 18 Nov 2022 at 22:07

good news Phil keep battling my mate 👍 gaz

Edited by member 18 Nov 2022 at 22:08 | Reason: Mistake

User

Posted 19 Nov 2022 at 14:38

Great news. Seems that it's all going in a positive direction. Shame about issues with oncologist. Have to say I count my blessings in that area. My last PSA result, two weeks ago, was 0.157 so well pleased with this. Have just completed 6 intensive radiotherapy sessions and side effects not great to be fair but still managed to do a gig two days after! I refuse to give in and carry on as close to normal as I can. Keep fighting buddy and stay strong.

User

Posted 20 Nov 2022 at 09:34

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

User

Posted 03 Dec 2022 at 13:56

Hi all

Hope you are all being as well as you can be this time of year,I have a question to put out there it's bugging me and I hope 1 of you may be able to shed a light on it.

I am on enza at mo and reacting well and I don't want to be morbid or jump the gun but sooner or later (hopefully well later) enza will not work for me and I'm presuming it's on to chemo (which I ain't looking forward too) I'll get to the point.

How long well chemo give me?

Regards Phil.

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 26 Jan 2023 at 23:04

Hi all

Well not posted on my own thread for a while but had my latest cancer chemist appointment today which included my latest blood test report,liver,bones and kidneys all looking good but PSA gone up from Nov results from 0.4 to 0.8 chemist did not feel to concerned about the rise as she feels I have reacted well to enza which I've been on now for just over 6 months and there's always a slight fluctuation in PSA readings,should I be concerned???maybe you guys could help me there.

All things considered I'm taking it day by day some good some bad aches and pains here and there and shed a tear now and again,not as active as I used to be but do still get out on my bike have a good walk and do light weights in the garage,eat well balanced diet and have a few beers on the weekend so all in all life continues as normal as it can,I know it won't last for ever but nothing ever does.

Regards Phil

User

Posted 27 Jan 2023 at 02:16

Hi Phil, I think I would go with the cancer chemist at the moment and not worry too much about the slight rise in PSA. Still well within normal limits. When is you next PSA test? Hopefully that will reassure you that the enza is still doing an excellent job for you.

Good news on your quality of life too, keep enjoying every day as much as you can. Sounds like you are doing all you can to stay healthy so that’s all you can do at the end of the day.

Cheers

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 27 Jan 2023 at 09:07

Hi Phil I got a similar response re scan albeit the opposite reason as in we know it is spreading all over so no need to have another scan to tell us something we already know. I think there is a massive demand on the one scanner they have here which I totally understand. The NHS have been, as I am sure they have with you, outstanding with me.

Look after yourself and fingers crossed for 7 weeks time for you

Michael

User

Posted 27 Jan 2023 at 11:45

Hi Phil, got my next blood test next week and always get stressed around this time. We try to keep optimistic but it's not always easy. I've been terrible to live over the last month or so but am coming out the other side. Stay 💪 but don't be too hard on yourself. Have sent you another PM. Take care.

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 01 Feb 2023 at 15:28

Hi guys

Wanted to put a question out there about the side effects of Enzalutamide,does anybody get emotional upset over the simplest of things I'm not just on about talking to someone about your condition but trivial things in life that before you could brush aside.

Regards Phil

User

Posted 01 Feb 2023 at 22:40

I think the side effects of any HT are accumulative. I’m still relatively ok after 2 years on Decapeptyl , but I can tell some areas of life are getting worse after each injection. I’m yet to need Abi and/or Enza , but I guess they only heighten the problems of long term HT even more.

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 02 Feb 2023 at 21:07

Thanks for feedback guys will take it all on board.

Regards Phil

User

Posted 09 Feb 2023 at 13:22

when I was diagnosed and put 6 monthly injections my emotions where all in tatters work to hard cry, see anything funny cry wake up wanting to cry with help from doctors, wife and prostate team things have become less of an issue, could be that now I stop before I get to Het up in any situation,

Hope you get thro' your emotions quickly

User

Posted 09 Feb 2023 at 18:36

Reminded me- although in general I would cry for no apparent reason (other than seeing children upset etc) there were two songs that would start me off - John Denver's Sunshine on my Shoulder and Falling Slowly by Glen Hansard/Markets Irglova. Should have taken them off playlist I suppose but all good now.
Peter

User

Posted 20 Feb 2023 at 12:58

Initially on Enza I did cry a bit at the drop of the hat, nowadays, I only have to fight back the tears every now and then.

I'm just not letting this motherf***** have its wicked way with me. No way, no how.

I've just been reading the potentially great news coming out of clinical trials in the USA with AMBRX for men with MHRPCa and it's perked me right up.

"Roll with the Punches, tomorrow is another day"

User

Posted 09 Mar 2023 at 12:25

Hi All

Not posted for a bit but do come on the forum everyday to read your thoughts and threads.Heres a quick re-cap of my journey Diagnosed April 22,stage 4,PSA 2104,4+4,N1 M1 May 22 PSA 3.58 Aug 22 PSA 2.6 Sept 22 PSA 0.502 Oct 22 PSA 0.5 Nov 22 PSA 0.478 Jan 23 PSA 0.826 Had over the phone consultation with oncologist today(because of snow)PSA up again to 1.01,slight concern from oncologist who is booking me in for urgent scans and perhaps radiotherapy and even chemo was mentioned,its knocked me and the wife back a bit as I thought I was ticking a long nicely with my QOL being not to bad,to be honest im feeling better now than i did 12 months ago it has been a rough 6/8 months after diagnosis physically,mentally and financially but I thought I would have a couple of good years on enza,I have holiday insurance in place for this year and have already booked up 3 hols with the first one being in a few weeks,I'm hoping that my oncologist is just being cautious and having the scans to back up the PSA readings,your feedback on this would be helpful.

Regards phil

User

Posted 09 Mar 2023 at 13:43

Hi Phil so sorry to read this. I hope things haven’t progressed too much. As regards insurance I’d be very very wary whether your cancer would be covered now I’m afraid. If you were to call them and say your Onco needs scans ( non-routine ) and that chemo has been suggested, then it’s possible that insurance would be null and void. Up to you whether you take the risk because you feel well. I’m still hoping to travel this year and can get insurance because my psa is stable and my primary treatment HT is still working. Good luck friend 🙏

User

Posted 09 Mar 2023 at 14:16

Hi
On my last appointment a couple of months ago I was asking for scans to back up PSA readings and was declined and yet when they are giving me scans a feel wary,there's no pleasing me.
Thanks phil

User

Posted 09 Mar 2023 at 14:28

Sorry to see that wee rise Phil. Hope it’s a blip rather than a trend. Good they are getting in there with some scans now though. Fingers crossed for you.

Cheers

Michael

User

Posted 09 Mar 2023 at 16:56

Hopefully it's a blip good luck Phil you deserve some gaz 👍

User

Posted 10 Mar 2023 at 00:24

Fingers crossed for your scans phil, really hope everything will be just fine and your PSA will settle x

User

Posted 10 Mar 2023 at 08:33

When my husbands psa stared to rise he had to have new scans done they came back insignificant change so hopefully this will be the same for you, fingers crossed.

Take care

ann

User

Posted 10 Mar 2023 at 09:31

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 16 Mar 2023 at 00:33

That’s reassuring Phil. Phew. Keep doing what you’re doing. Rooting for you.

User

Posted 16 Mar 2023 at 07:01

Adjuvant RT and Chemo have both been shown to beneficial. Dr Eugene D. Kwon, M.D the USA has done some interesting presentations on the benefits of throwing everything at advanced PC up front.

Fingers crossed you get a good scan result

User

Posted 11 Apr 2023 at 15:44

Hi all,hope you are doing as best as you can.

Well good news first PSA down a tad to 0.9..bad news 2 kidney stones found in left kidney after intense pain in back and fever after visiting A&E Friday 7th April kidney output down to 30% so single nephrostomy tube to be fitted ASAP before surgery and before further infection and possible sepsis....Good news at least its not the cancer causing the issue,at least its only a single nephrostomy(I had a double nephrostomy fitted for 5 months last year)and hopefully the tube want be fitted for to long,stay as well as you can all.

Regards Phil

User

Posted 11 Apr 2023 at 17:41

Hi Phil and everyone,

The most important PSA news is great, brilliant. That’s bound to be a big relief. Long may it continue.

Sorry about the other challenges. You’ve got form and experience but it still sucks. As you say, at least the pain was unrelated to the Cancer. Phew.

All the best!!

User

Posted 11 Apr 2023 at 18:39

So good to hear you have had a lowered PSA Phil. Sorry about the kidney problems but as you say it’s not the cancer and can be dealt with. Hope you are ok and good luck to you

cheers

Michael

User

Posted 11 Apr 2023 at 20:49

Thanks Mike and matt for message's

Was ticking along with the Enzalutamide but have been told to put it hold for now to give my kidneys time to recover I hope this doesn't upset the apple cart,can anyone give there thoughts or experience on pausing enza and restarting it.

Regards Phil

User

Posted 11 Apr 2023 at 21:59

Good news Phil on psa front long may it continue all the best gaz 👍

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 21 Apr 2023 at 10:05

Just shows you how well the Enza is working for you Phil. Good to hear you are able to start it again and I trust they will kick in and bring you back down to Low levels again.

Best wishes

Michael

User

Posted 21 Apr 2023 at 10:58

Thanks Michael

User

Posted 01 Jun 2023 at 19:39

Hi all

Not been on for a while but have been reading your threads everyday,here's my latest update from oncology appointment today and and any advice you could give on kidney stents. Latest PSA reading is 2.4 that's gone up from 1.4 last month when I was diagnosed with kidney stones and a had a single nephrostomy tube fitted while waiting for stent to be put in place,I'm hoping that the rise over the last 2 months is down to stones and 1 week off enza,my oncologist is hard work and she has told me to prepare myself for chemo and has mentioned the PSA of 20 for this to begin,so I probably have a couple of 3 months to turn this around else it's bye bye enza,I'm still clinging onto the hope that the stones have had something to do with this rise we will wait and see.

Has anybody had the experience of a kidney stent??my procedure has been cancelled twice I'm booked in for next Wednesday I'm booked on a cruise for the Saturday after,some people say I shouldn't go some people say you'll be fine,I'm telling myself I'll only know until I've had it fitted but I'll only have 48hrs to make that decision,any thoughts you have would be grateful.this could be my last big trip away I've paid over 1000 pound for holiday insurance,it will be my 54th birthday while on board and I'm going with friends,me and my wife are going round in circles if we should go or not go.

Regards Phil

User

Posted 01 Jun 2023 at 21:09

Phil you are a inspiration go and enjoy your holiday we all have to keep moving forward I hope it all works out well you more than deserve this holiday all the best gaz 👍

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