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User

Posted 06 Jul 2021 at 01:11

How frightening for you both. It does put me in mind of Trevor_Boothe though - if you don't know Julie it will be worth you looking for some of her old posts as I think Julie's coping skills and ability to put pen to paper might be a tonic for you. Trevor was diagnosed with a PSA of 13,000 - went on to have two major heart attacks and a stroke plus other emergencies (pneumonia at one point I think) at various points so she (and the rest of us vicariously) became very familiar with the blue light brigade. He rallied every time and repeatedly put all the medical predictions in the bin.

Julie once wrote a poem on here about being on a train journey - it was funny but also tragic ... it made me cry and I never cry. I will try to find it for you. Hang in there x

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

User

Posted 10 Jul 2021 at 11:16

Well, after a very turbulent week and being moved from Aberystwyth to Swansea David is now home. He hates hospitals with a vengeance, but he managed to stick it out and had a stent fitted yesterday.It seems he had a cardiac event last Sunday. He did get to have a ride in an ambulance when the England match was on and felt well enough to cheer the lads on. The paramedic and driver were footy fans so it helped the journey with a bit of team spirit & fun. The surgeon cardiologist agreed hospitals were not good places to be and said he could possibly go home six hours after his stent had been put in. Apart from loathing the hospital atmosphere, and him being out of control,which he hates, when he got to the actual procedure of having the stent fitted he said it was fascinating, so much so he asked to see it again, with full explanations.

The surgeon who did the procedure asked how old he was, he said 71 today, the guy was very complimentary about his fitness. David replied I'm in good fettle then for a 71yr old who has had PCa Gleason 9 and a heart attack then? The Dr. said don't knock it, you are in pretty good shape for your age. They also asked about what he used to do, he said pro musician, it was suggested he could give them a song and play when he was finished, David said he could but they'd have to book him in.

David seems to have been quite lucky, he only needed one stent, and has a cocktail of drugs that would make El-Chapo jealous. He has a selection of bruises and puncture wounds, needs a shower as he can't have one till tomorrow, but he is feeling better already. Full of praises for the technology and efficiency of the procedure, but sadly he hated the food, and the staying there until the deed could be done.

He will have a few days to rest, then another PSA is due. When all that is done we have three dumpy bags of bark to move, and a house to paint. So, he'd better rest while he can and get strong. We have lots of living to do.

As I type he's fast asleep, he has hardly slept, all the time he was in hospital, he said he doesn't think they are good places for poorly people to be in😎machines going all night, bodily functions abound and the bed was uncomfortable. Other than that he seems to have survived the experience.

Being an 'almost' dutiful wife I will prepare his breakfast and make him cuppa. I'm sure more updates will follow.

Thanks for reading my waffle if you have.

Leila xx

User

Posted 10 Jul 2021 at 11:37

Ha! Brilliant news although I had to google El Chapo :-/

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

User

Posted 10 Jul 2021 at 12:01

That's great news. Some moments in the football game could have gave anyone a heart attack.

Dave

User

Posted 10 Jul 2021 at 14:09

Fantastic Leila:-))

User

Posted 10 Jul 2021 at 15:29

Thanks people, Lyn, you have led a very sheltered life. I thought everyone knows

who El-Chapo was.😂

Edited by member 10 Jul 2021 at 15:39 | Reason: Not specified

User

Posted 10 Jul 2021 at 16:12

If he had been a well known purveyor of duty free cigarettes, I would have known him

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

User

Posted 10 Jul 2021 at 17:28

Haha, He was purveyor of much more interesting plants. Evidently he looked after his plantations workers and their families. Mmmm, I bet he did.

User

Posted 29 Jul 2021 at 13:37

David is recovering from his ' Cardiac event' and had his PSA result today. It has gone up to 1.1 this is the third rise in a row.

PSA August 13th 2020 0.2

PSA 20th November 2020 0.1

PSA February 22n 2021 0.3

PSA May 17th 2021 1.0

1.0 Testosterone 18.7

PSA July 29th 2021 1.1

Diagnosed September 2015 Gleason 9 TB3

HDR Brachy April 2016

EBRT June 2016

Three years Prostrap

Last Prostrap March2018

He has been off any PCa treatments since March 2018

I've just given David a copy of my full notes, and he's quite surprised how long he has been off the HT.

Thank goodness he has someone to keep his notes up to date

Concerned that this is he third rise in his PSA, the specialist nurse has advised him no action will be taken until his PSA reaches 5 or more.

David hates hospitals, any type of interference and now he has more medication he's right pi**%d off. I've bought him a dosset box, to make sure he takes his meds at the correct time and right amount.He has said he now feel he's getting old. I've advised him he can't do that or I'll have to look for a younger model

Next appointment with cardiac clinic mid August.

I think a trip to his favourite pub might be in order this eve.

Leila x

User

Posted 29 Jul 2021 at 14:06

Hi Leila. If I’m reading your readings correct the last rise was from 1.0 to 1.1. It’s a very small rise and is still pretty low considering David still has a Prostate. You mentioned about reaching 5 before anything will be done. Well mine got to 5.2 last reading and I started back on the HT within days. But my rise was much faster than David’s so I’d say not to worry too much yet. I had the same treatment as David except only 2 years on Prostap.

I hope you get to the Pub and have a good time 🍺

Phil

User

Posted 29 Jul 2021 at 14:25

Keep the faith and get some beer in him ….

Best wishes

User

Posted 29 Jul 2021 at 17:21

As GoalHanger says the PSA rise has slowed down. You probably don't realise how good that result is. When he was on HT and had no testosterone his PSA was artificially low, and when he came off HT and testosterone recovered then his PSA should return to it's "normal level". Now no body knows what "normal level" is for David, because all the time you have been aware of his PSA he has either had cancer or been on treatment for it.

Oncologists consider under 2.1 to be normal for someone who has had RT. If you plotted David's psa against time during and since treatment you would see a low flat line whilst on HT followed by a steep rise about a year after finishing HT and most importantly now signs of it levelling out at a "new normal level" which looks to be about 1.2.

I know I am always optimistic and who knows what might happen, but if my PSA behaves like David's in the next couple of years (I'm about two years behind him) I will be very happy. So get down that pub and celebrate a levelling out of the PSA at a number well below what an oncologist would consider troublesome.

Edited by member 29 Jul 2021 at 20:02 | Reason: Not specified

Dave

User

Posted 15 Nov 2021 at 17:41

It’s that time again. David had his PSA on Friday and its come back at 2.3 the third rise in a row. As his PSA was only 8.8 at diagnosis the urologist is suggesting PET PSMA scans, not what we wanted to hear, he’s already been advised he can’t have HT due to his recent heart attack, and the urologist was reluctance to offer treatments in his last letter if the PSA went the wrong way. Having a low PSA at diagnosis with a high Gleason evidently needs monitoring closely. He was due to have a t/c consultation tomorrow but this has been cancelled and rearranged in January. I’ve since spoken to the urologist’s secretary and sent an email to be passed on to him. ( this is Wales we can’t email the consultant directly, we might make a spelling mistake, or something heinous) so hopefully he can discuss the situation quite soon.
This is not what he’d hoped for, but with a Gleason 9T3b has he just been lucky so far. Lots of colourful expletives come to mind but I’ll spare you, and leave it to your imagination. So we wait to hear from the urologist and try and keep positive.

Such a pain David is a very young 71, has lots of living to do and we are not ready to get old yet!! Such a bl**@y pain.

Comments and advice, welcome.

Leila

User

Posted 16 Nov 2021 at 08:48

Sorry to hear David’s PSA has gone up again . Let’s hope it doesn’t go up anymore as it’s only just above the 2.1 they say is ‘normal’…

January is a long wait for his next consultation and I’d keep trying to bring it forward. Hope they will have some options ready then in case David’s PSA does rise again.

Thinking of you both .

Phil

User

Posted 16 Nov 2021 at 10:25

Thanks Phil,

Our concern is, if it has returned David can’t have hormone treatment because of his recent heart attack. I see from you profile the HT seems to have reduced your PSA quite a bit,that’s good to read.

Hopefully he’ll get a call from the urologist after the email was sent off yesterday. David has been doing so well, he’s a stressy type who has found the last couple of years hard going, then who hasn’t. This last bit of news hasn’t done him any good.

Hope you are managing ok these days.

Thanks again for your support.

Leila

User

Posted 16 Nov 2021 at 12:14

I didn’t know that heart problems restricted use of HT. Thats quite a blow and I understand your worries. Hopefully you’ll get into see the consultant before Christmas and they’ll have some plan to move forward.

I must say the Zoladex is doing it’s job . Feels very different to the Prostap. I think more physical side effects but not so bad on my mind, so I’m grateful for that.

Take care

Phil

User

Posted 16 Nov 2021 at 17:04

Sorry to hear about the PSA rise Leila, I think this has definitely turned it from a just returning to normal, into something which needs watching. I hope that next PSA isn't too far above this one. If HT isn't available I have no idea where to go next.

Dave

User

Posted 16 Nov 2021 at 17:17

It may be a case of 'do no harm' ... while the PSA is still low it isn't going to kill him whereas heart problems might. Possibly, when the PSA gets much higher, it tips over the other way and the HT will be introduced because the benefit / risk analysis is clearer.

Trevor Boothe had serious heart problems including two heart attacks while on HT but they never stopped prescribing it. Steve has also had HT after a heart attack.

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

User

Posted 16 Nov 2021 at 18:19

Awaiting a call from the consultant, who is a real belt &` braces character. David's heart attack wasn't the worst, he only had one stent, and was told the other ' blockage' wasn't pivotal to his wellbeing. After a discussion with the consultant we will have a better idea.I just wish the cardiac team and and the other lot would converse a bit better. What we want to get discussed is the effect of the heart meds on his prostate etc, but this seems to be a bridge too far at the moment. Hey ho.

Thanks for the replies.

Leila

User

Posted 27 Nov 2021 at 12:57

So, David saw the urologist and he recommended a PSMA pet scan as the PSA has gone up to 2.3. David then receives a letter from the urologist apologising, and informing David he had been told David has to have a CT scan and an MRI scan before a PSMA pet scan will be considered. It seems the urologist has been overridden. I know his PSA is still low, but it was low at diagnosis which is the concern.
Now trying to get a quick discussion with the urologist to ascertain what’s the best move, cut to the chase and pay for a PSMA thingy, have the CT and MRI scan offered and see what happens. CT scan next week, MRI mid December.
Getting to discuss options with the urologist is not easy.
This is a pain, he’s recovered well from the heart attack, feels well and he has a lot of living to do. What he doesn’t want is a second rate service due to budgetary restraints or consultants pulling rank.

David hates hospitals with a vengeance and situations like this leave him running for the hills.
I’m trying to logically assess the best way forward as its my role.

Suggestions welcome.

Leila.

Edited by member 27 Nov 2021 at 16:31 | Reason: Not specified

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