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User
Posted 28 Apr 2020 at 10:49

Ido4 

Last reading in February this year was 0.34 / 0.33.  Onco nurse estimated doubling time at around six months, so in a year it will be above one. The theory is that once above 1.0 the scan may give a better chance of detection ? Next PSA test is early June so we are still tracking it's progress.

Thanks Chris

 

User
Posted 03 Jun 2020 at 11:18

Had blood test at 9.20 yesterday at GPs  and got a text message from onco nurse at 10.40 today. Rise from 0.33 almost four months ago to 0.41. Tele consultation with onco nurse in a week.

Thanks Chris.

User
Posted 03 Jun 2020 at 12:12
Hi Chris

Sorry to hear this. Keeping fingers crossed for you.

User
Posted 03 Jun 2020 at 12:15
Any rise isn’t good Chris but hopefully it won’t start shooting off the scale anytime soon. I suspect the tel conversation won’t bring any surprises. Another test in 4 months?

Take care

Bri

User
Posted 03 Jun 2020 at 12:19
Doesn’t seem too bad Chris. Keep the faith
User
Posted 03 Jun 2020 at 15:42
Okay, breathe. I don't know where the nurse got a doubling time of <6 months from but I have just put all of your results for the last 2 years into the MSK calculator and your doubling time is 17.1 months with a PSA velocity of 0.1/year

On one hand that gives you lots of breathing space but on the other, that seems to me to be a very long time to wait for a scan. Perhaps it would be better for peace of mind to push for a scan sooner rather than later?

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

User
Posted 03 Jun 2020 at 16:44

Lyn

Thank you very much for that, when I looked at the results this morning I couldn't get my head around the doubling time. I will talk to her about the scans and might see if I can get a call with my onco who some of know of from the Mill. 

Never quite sure what a safe PSA is for someone who is post surgery and SRT. 

Thanks to you all for your support. 

Thanks Chris

 

 

 

User
Posted 04 Jun 2020 at 09:01

Chris, it doesn’t look too bad from where I am but any rise is worrying, it’s a case of where are the little sods and what are they doing!
Keep strong and ask Onco for that scan, I asked and got ignored, Onco booked one, and he got ignored by Scan team!

Don't let it get as bad as mine, through lack of help from Oncology team. (Mets in 22 places)


Chris.

Edited by member 04 Jun 2020 at 09:12  | Reason: Not specified

User
Posted 04 Jun 2020 at 09:33

Hi Chris, sorry to hear this. Hope you can get a scan organised to see what’s going on.

 

Ido4

User
Posted 04 Jun 2020 at 09:37
Hi Chris

Hope this development doesn't cause you to much worry. Hope you get a scan to put your mind at rest and then hope the results are favourable.

Good luck

Cheers

Bill

User
Posted 07 Oct 2020 at 19:45

Hi

I was expecting a rise in my latest PSA but it has stayed at 0.47.    Obviously please but with the result, but.   What is happening when you are not having any treatment and your normally rising PSA stays at the same level for a few months. Three years post SRT.

2/10/2019 PSA 0.19

10/2/2020 PSA 0.34

3/6/ 2020 PSA 0.41

10/7/2020 PSA 0.47

1/10/2020 PSA 0.47

Thanks Chris

User
Posted 07 Oct 2020 at 20:00

Have you had any scans recently Chris?

I know it can be difficult with the current situation.

Ido4

User
Posted 07 Oct 2020 at 20:21

Ido4

I have got a bone and CT scan coming up in the next few weeks. Saw my onco today who came across as very anti pet and psma type scans at anything below a PSA of 8.

Thanks Chris

 

User
Posted 07 Oct 2020 at 21:54
I think Ulsterman was the luckiest with his scans. Unless you have a psa over three you may see nothing with any PET scans. I had both Choline and Gallium 68 at high psa which showed zero. It took my psa to be over 100 before they saw any spread with normal CT and bone. Unless they are offering them for free I wouldn’t pay at your levels. But obviously up to you. I know one mans psa is different to another’s. I’ve had at least 6 bone scans and believe me when something is seen then it is seen - and I mean everywhere ! If you can get a free scan then push , if not trust the normal route.

Insane to go from nowhere to multiple mets in most vertebrae in just 6 months , but not entirely unexpected tbh. Good luck mate !

User
Posted 07 Oct 2020 at 23:23

CJ

I did bring up your type of situation where scans do not pick up anything. The scans are free and are a possible prelude to other things.

Thanks Chris

User
Posted 04 Nov 2020 at 20:53

Latest PSA slightly up @ 0.51, bone and CT both clear. Accepted onto a double blind PCa vaccine trial. 

Thanks Chris

User
Posted 05 Nov 2020 at 00:39
Sounds like good news all around!
User
Posted 05 Nov 2020 at 22:07
Sorry to hear about the rise Chris but as you say it’s a slight one

What’s the trial you have been accepted for

Bri

User
Posted 05 Nov 2020 at 23:26

Brian

It's Rhovac -002 phase 2 double blind vaccine trial. There was a possible hiccup this afternoon with one of the criteria for joining the trial. Hopefully get it sorted tomorrow.

Thanks Chris

User
Posted 06 Nov 2020 at 00:25
Rate of rise is slow which must be a relief mixed in with a bit of disappointment? The trial sounds interesting - the idea of giving a vaccine to someone that has already had radical treatment could be a game changer in the future!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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