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User
Posted 28 Apr 2022 at 15:14

Good luck.  I just re-read your profile it's quite a story.  All the best, Peter

User
Posted 28 Apr 2022 at 19:06
Chris and Chris, you haven't defeated it but you keep it sieged. Stay strong!!

Best wishes.

Lola

User
Posted 17 May 2022 at 19:12

 Latest PSA now up to 1.4 and based on my spreadsheet rising faster in the last few months than in previous years. I had a meeting today with the oncologist's registrar and my trials nurse. The recent CT and bone scan that are part of the trial do not show anything. The consultant radiologist told me recently that the  threshold for a PSMA scan had been dropped from 0.5 to 0.3 due to better results being obtained, i assume that applied to our hospital. 

A PSMA pet is now being organised. Does anyone know what is the minimum and maximum number of areas that can be treated if anything is found.

The data for the world wide vaccine trial is now being processed and should be reported by late May or early June. As i have said before I suspect I was on the placebo.

 

Glad to see Lyn is back.

 

Thanks Chris

 
User
Posted 17 May 2022 at 19:39

I think like everything else, it varies between oncos / hospitals. John was told by Mr B that he could have SABR if one or two hotspots were identified, others seem to be told that 3 is the max. Then there was that guy who posted that he has had a number of spots zapped, plus had a rib and a vertebra removed and I think a leg bone? I wonder if he is still alive?

Edited by member 17 May 2022 at 21:48  | Reason: typo

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

User
Posted 17 May 2022 at 19:54
Maybe this can help you?

https://ascopubs.org/doi/full/10.1200/edbk_239041

Best,

Lola

User
Posted 17 May 2022 at 22:04

I'll add something: I've read that having five spots or less is considered "oligometastasy" and can be treated, but as Lynn said above, I guess it depends on the doctor, hospital, patient, location of the spots and criteria in general.

 

User
Posted 17 May 2022 at 22:16

Lola, thanks for the info, lots there to digest and understand, but I did gleen some information from it.

Lyn , I had it in my head it was a maximum of three. What threw me was a comment from the trial nurse after the oncologist left, that if there was only one spot found, that would not be treated with RT.

Thanks Chris

Edited by member 17 May 2022 at 22:18  | Reason: Not specified

User
Posted 23 May 2022 at 12:52

I recently received an email from one of my GPs that said a PSA of 0.99 was normal. I previously was told be a clinician that 0.3 was not biochemical recurrence. Another GP asked why I was having a PSA test if I didn't have a prostate. The receptionist sent me an email that said any PSA between 0.& 4 was acceptable.

Can anyone point me in the direction of a NHS document that defines BCR after surgery and follow up salvage RT. 

I have an appointment with one of the senior GPs in a few days time and would like her to educate her staff. I may escalate this to a higher level.

Thanks Chris

User
Posted 23 May 2022 at 14:02

So sorry I can't help you as I don't think my hub's report in Spain is any good in this case.

I encourage you to go as far as "impossible" and I am confident you'll finally get to be properly treated, as you deserve and are entitled to. Apparently you happen to have come across an insensible group of professionals, but I know that, luckily, NHS works pretty well. 

Looking forward to some good news from you soon.

Best,

Lola.

User
Posted 23 May 2022 at 14:18
User
Posted 23 May 2022 at 14:20

Unfortunately Chris's issues are widespread in the NHS...

 

User
Posted 23 May 2022 at 14:33

I'm afraid everywhere there is a lot going on. 

At least, Chris has now a formal evidence that he's being mistreated and can fight with a strong argument.

User
Posted 23 May 2022 at 16:37

Francij1, thanks for the link, because we live with prostate cancer hopefully we understand what it all means. I do however see lots of guys on another forum telling post prostatectomy guys that thier PSA is great, even when it is above 0.2. 

Thanks Chris.

 

User
Posted 23 May 2022 at 16:46

Lola, thanks for the reply, fortunately because of forums like this I/ we am aware of what is a good and not so good result for ourselves. Alot is being done to make men aware of getting tested and treated. I wonder how many men will die of prostate cancer because the follow up care is lacking.

Thanks Chris

User
Posted 23 May 2022 at 23:29

You're right, Chris. And what is more, I'm afraid physicians sometimes focus on statistics, budget, live expectancy or social economy, on the scientific argument that PC growth is slow, or under the statement that "many men die WITH PC, not BECAUSE OF PC. I mean statistics are insensitive given the fact that figures happen to be persons: you, my husband, whoever...

When Paco was operated, five years ago, everything was right. The uro said "no concern as long as PSA is below 0.4 . This is the way we work." Nevertheless, we kept getting as much knowledge as possible on sites like this. Over time his PSA rose to 0.19 and then 0.33 . At that very moment, the uro who was currently following my hub's evolution referred him to onco. A PSMA TAC showed two spots.

In a few hours, Tuesday May 24 he's receiving the first IMRT sesión, apparently heading to cure. 

A bit nervous right now, I can't go to sleep.

 

User
Posted 23 May 2022 at 23:45

Lola, hope the treatment is successful for Paco.

Thanks Chris

User
Posted 29 May 2022 at 20:15

☹️

Looks like the vaccine trial I was on has failed to meet expectations. Not sure if I was on the placebo or the drug. I do get to find out later. 

Thanks Chris 

User
Posted 29 May 2022 at 20:28

So sorry, Chris. You were looking forward to taking this trial, but heaven knows what the outcome would have been. On the other hand, as you say, your ignore whether you were in the blind or not. This given, now I wish you were included on the placebo🤷‍♀️Do not get frustrated. 

XX Lola

 

Edited by member 29 May 2022 at 21:51  | Reason: Wrong word

User
Posted 29 May 2022 at 22:38

Sorry to hear this Chris. Hope you get to find out soon and hope they can get a further treatment plan sorted for you x

User
Posted 29 May 2022 at 23:35
I think this is no great shock to you as you already suspected that you were either on the placebo or that the vaccine was not working for you? Disappointing for the trial team though and for future patients 😕
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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