The million dollar question

User

Posted 18 Nov 2022 at 18:37

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 23:05

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

User

Posted 18 Nov 2022 at 23:07

good news Phil keep battling my mate 👍 gaz

Edited by member 18 Nov 2022 at 23:08 | Reason: Mistake

User

Posted 19 Nov 2022 at 15:38

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 10:34

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

User

Posted 03 Dec 2022 at 14:56

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 19:24

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 00:04

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 03:16

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 09:48

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 10:07

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 12:45

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 23:37

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 16:28

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 23:40

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 19:36

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 22:07

Thanks for feedback guys will take it all on board.

Regards Phil

User

Posted 09 Feb 2023 at 14:22

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 19:36

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 13:58

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"

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