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User
Posted 23 Jan 2023 at 17:55

Sorry to see your PSA has risen Chris. Time for another scan perhaps?

 

Ido4

User
Posted 23 Jan 2023 at 18:20
Sorry to hear this Chris. I know with my 3 bouts of palliative RT that a flare was warned ( and a nice bottle of Morphine ) but I only felt the pain of RT to my throat and stomach and lungs. But yes I think you do get a bounce if it flares. Good wishes friend
User
Posted 23 Jan 2023 at 22:51

I wish I could offer more knowledgeable thoughts than good wishes.  From what I've seen one psa reading isn't a story.  Peter

User
Posted 24 Jan 2023 at 16:13

Sorry to see this Chris. I can’t answer your question but really hope it is a bounce….you definitely deserve something to go your way x all the very best x

User
Posted 24 Jan 2023 at 19:26

Thanks for the replies, went to see J the oncologist this afternoon and came out more confused than when I went in. 

My reluctance to have HT apparently excludes me from several treatments. The conversation contained discussions about treatment protocols and private treatment.

Bottom line I will have another PSA in 3 months possibly followed by another PSMA scan. Based on my spreadsheet the PSA might be around 4.5 by then.

 

Thanks Chris 

User
Posted 24 Jan 2023 at 21:32

Sorry to hear this Chris. Did J say whether the increase was due to a ‘flare up’?

I have my Oncol call next week. Supposed to be every 4 months but it never happened in November. So be interesting to see how the PSA has behaved or not over the last 6 months

Fingers crossed for you mate

Bri 

User
Posted 24 Jan 2023 at 21:50

Brian, I didn't get a straight forward answer to that question,in fairness probably because it isn't that simple. It could be that another tumor is creating the rise in the PSA .

A lab error on the PSA  and missing the tumor were considered unlikely.

Hope you are keeping okay.

Thanks Chris 

 

User
Posted 25 Jan 2023 at 00:15
Not what you or any of us wanted to hear. Fingers crossed it's all those ruptured PC cells
User
Posted 16 Feb 2023 at 17:08

I went to see my GP a few days ago regarding my blood pressure and kidney function, as he was arranging a some blood tests I asked if he could sneak a PSA test in there. He was a little reluctant but when I explained my last PSA rise was out of my normal rise rate he agreed.

My onco nurse rang me this morning with the result, it is now upto 3.6. The following are my last few results.

 

05/08/2022 1.8

SABR to pelvic lymph node 5 sessions 30 Gy

29/09/2022 1.8

23/01/2023 3.1

15/02/2023 3.6

 

I use a spreadsheet to record my results and sometimes play with the data, my PSA is now rising faster than ever before.

 

I don't seem to be able to find anyone in the same situation i.e., 5 lots of sabr treatment to a pelvic lymph, so cannot get any comparisons. I can't find any data on the internet. 

 

Any help would be much appreciated.

 

Thanks Chris 

 

User
Posted 16 Feb 2023 at 18:55
Definitely not what you wanted to hear.

Can you get another scan? Would show if the sabr had had an effect? Possibly show if it's popped up anywhere else..

I guess realistically you now have 2 choices: Do nothing favouring quality of life or chuck the kitchen sink at it with chemo and intermittent HT..

Dr Qwon in the state's is the only guy I regularly see posting on aggressive treatment for metastatic PC. He is a fan of chucking the kitchen sink at it..

As you are now 71 maybe the do nothing is preferable as you still have chemo and HT in the bank?

User
Posted 16 Feb 2023 at 19:34
Sorry to hear that, Chris, but knowing about so many cases worse than yours doing well, you better not fret too much. As Francij said, you have two options: doing nothing or throwing the sink and use the many and new weapons that luckily are now available.

In my honest opinion, a PSMA SCAN should be the first step, and then, decide.

Good luck xx

User
Posted 16 Feb 2023 at 19:56

Franci and Lola,I see the onco in around five weeks with another PSA a couple of days before the appointment. We have already discussed further PSMA scans a possible further SABR treatment either in the  NHS or funded by the insurance company. I am reluctant to go down the HT route.

What I am struggling to understand is why the  treatment to a tumor has resulted in such an acceleration of the PSA levels. If there were data or experiences to say zapping a tumor boosted PSA levels I would have a better understanding of what is happening.

 

Franci , I am a fan of Kwon.

Thanks Chris 

 

User
Posted 16 Feb 2023 at 22:03

Sorry to see this Chris. Like the others have said the PSMA seems the best thing. 
I said it myself the other day that further treatment isn’t really the way we would want to go, but how lucky are we that it’s there as an option 🙏🏼 Fingers crossed you will get a plan on your next appointment and get it sorted out x

User
Posted 16 Feb 2023 at 22:32

Elaine, thanks for the reply and thanks for the support you give to many of us on here. , At the last meeting with the onco we discussed the options going forward, if the first lot of SABR fails there would be a second PSMA scan and more SABR treatment if applicable.

I suppose it is the electrician in me wanting to understand the mechanics of what is happening. 

Thanks Chris 

User
Posted 16 Feb 2023 at 23:02
Chris, there isn't much I can add to your knowledge in this regard, but just in case, I'll tell you about my hub's recent procedures and results, since there's some similarity .

His PSA after Da Vinci was ok, but along five years post surgery it was slowly increasing. When it got to .33 uro referred him to onco and in a few days he had a PSMA SCAN (from the pocket). A pelvic node and one seminal vesicle's bed lit up. He was then put in HT followed by 30 IMRT sessions to the two spots shown and to the whole pelvis as a prevention, at the same time he continued HT. After two or three months in HT alone, a CAT SCAN showed no lesion in the node and some shrinking in the other spot. Now, one year since this procedure started PSA is .006

I can see you're reluctant to HT and the choice is up to you, but maybe you could consider having it?

I insist, try to get PSMA as soon as possible.

User
Posted 16 Feb 2023 at 23:17
"if the first lot of SABR fails there would be a second PSMA scan and more SABR treatment if applicable."

Wouldn't it be shooting blind, to no visible target? The purpose of PSMA is finding the right place to aim the radiation... Just guessing.

User
Posted 16 Feb 2023 at 23:37

Originally Posted by: Online Community Member
"if the first lot of SABR fails there would be a second PSMA scan and more SABR treatment if applicable."

Wouldn't it be shooting blind, to no visible target? The purpose of PSMA is finding the right place to aim the radiation... Just guessing.

Lola, thanks for the replies, we are probably both saying the same thing in a different way. Assuming the PSA does not suddenly go down, I will be having another PSA in a couple of months, if that detects something I can have more SABR treatment to upto 3 tumors, (5 if I go private).

 

Thanks Chris 

 

 

User
Posted 16 Feb 2023 at 23:46

Originally Posted by: Online Community Member

Elaine, thanks for the reply and thanks for the support you give to many of us on here. , At the last meeting with the onco we discussed the options going forward, if the first lot of SABR fails there would be a second PSMA scan and more SABR treatment if applicable.

I suppose it is the electrician in me wanting to understand the mechanics of what is happening. 

Thanks Chris 


Ditto Chris….the support I’ve had from you and the other guys and gals on here has just been unbelievable and something I won’t ever forget…especially your support and advice last Christmas…I would have been in a state without your response I’m sure.

I always feel the same that I want to know exactly what is going on 🤦🏻‍♀️ I’m starting to realise it doesn’t always work like that but will keep trying anyway.

Really best of luck for your next appointment and I will keep a look out for your updates x

 

 

User
Posted 17 Feb 2023 at 10:36
As you know you are PSMA positive are there any "early lutetium" trials about? Might offer a bearable Side effect profile and targeted radiation??
User
Posted 17 Feb 2023 at 10:39
As you know you are PSMA positive are there any "early lutetium" trials about? Might offer a bearable Side effect profile and targeted radiation??
 
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