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User
Posted 04 Jul 2024 at 18:07

Hi so just got back from seeing the oncologist, nothing new showing on the recent PSMA scan which gives me mixed feelings. On the one hand nothing showing leads to the possibility of lots of little bits. Finding a tumor would have confirmed more concentrated growth. Plan is PSA in four months trigger figure range is roughly 3 to 10, all depends on velocity etc.

So still dodging HT but he did say that HT will be put forward at some point.

The two previous seen tumours are not growing and are not active. So that's good news.

Thanks Chris 

Edited by member 04 Jul 2024 at 18:08  | Reason: Not specified

User
Posted 04 Jul 2024 at 19:46

That is a bit of a mixed bag Chris. Did they use the same tracer that has proved succesful for you in the past?

User
Posted 04 Jul 2024 at 20:51

Chris, My first tracer was the 1007f18 that detected the first tumor. The second tracer was gallium68 which detected the second tumor and still saw some activity in the first tumor. For this recent scan I could have had the F18 tracer done locally but opted to go down to Oxford where they use the Gallium 68 tracer. 

 I did think the Gallium68 was the better tracer in my circumstances, but I may be wrong.

Thanks Chris 

User
Posted 18 Jul 2024 at 12:41
Chris

I haven't read the whole thread but did pick up on your reluctance for HT. Was this based on a previous attempt to use it?

I have come to the conclusion that there are different versions of HT and some may affect you differently.

Based on reports from the group, I opted for DECAPEPTYL (3 month) rather than the Prostrap that the Onco wanted me to take and the side effects have been minimal. OK, libido has gone but that (for us) wasn't life changing and the occasional hot flush (that my wife reckons is nothing compared to what menopause did to her LOL) but that's been about it. Some tiredness at the beginning which was more related to the RT than the HT as it has now passed.

The good news is that Testosternone was down to 0.5 (target < 0.7) after the first injection.

Maybe something to consider if you haven't done so already :)

User
Posted 18 Jul 2024 at 13:10

Steve, I did go on bicalutamide for six months and dealt with it quite well, there was a bit nipple soreness a bit of of boob growth and perhaps an imagined drop in labido.

To answer your question, the reluctance is based on a fear of the effects . I have been on the journey for too many years,I am worn out.

How are you coping post RT ,do you miss the routine, I felt almost abandoned once the intensity of attention and treatment stopped. Hope your treatment works well.

Thanks Chris 

User
Posted 18 Jul 2024 at 13:50
We’ve known each other over 9 years now Chris. You know I put HT off for the longest time. Even took 3 rounds of palliative RT to swerve it. In the end I had no choice. I’m on 3 month Decapeptyl now for 3 1/2 years and it’s been kind to me re side-effects. And I’m still a randy boy in all honesty 😀😀
User
Posted 18 Jul 2024 at 14:29

Chris, thanks as always for you support and wisdom. My recollection is that I questioned your decisions not to have salvage treatments and here I am contemplating not following my own advice to you 😕.

I do have a track record of changing my mind, I wasn't having surgery,SRT or bicalutamide but I did all three. I have/ had no issues having the SABR treatment and would continue along that path without hesitation. I have told my oncologist that "don't want" isn't the same as "won't have".

Our 20 year old cat died a few weeks ago, Just to totally ruin today day our near 15 year old dog has this afternoon been diagnosed with liver cancer.

Thanks Chris 

User
Posted 18 Jul 2024 at 14:54

Originally Posted by: Online Community Member
How are you coping post RT ,do you miss the routine, I felt almost abandoned once the intensity of attention and treatment stopped. Hope your treatment works well.

Thanks (and sorry to hear about the pets! I think we are close with ours too but he has had a darn good last 2 years (rescue))

I know what you mean about missing the routine - being retired it did get me out of a bit of a rut and I quite enjoyed the 45 minute drive each way but never made any 'friends' as the staff changed every day (they have 7 machines so swap and change). But also glad it's over.

I did get a premature PSA test before it ended as the lab misread the prescription and that came back at 0.03 (started at 0.22 pre-HT/RT) and T at 0.5 which was promising - back to see the onco at the end of August.

User
Posted 18 Jul 2024 at 17:29
Sorry to hear that Chris genuinely , but it sounds both of them have had a good old innings under your care.

Keep the faith and make your own decisions. Consultants aren’t Gods— they just going by the rule book 📖

User
Posted 19 Jul 2024 at 16:58
Sorry about your pets Chris.. Fingers crossed you can avoid the HT for another 10 years.
User
Posted 15 Oct 2024 at 12:48

 

 

 

 

Trying to  private message to you, Chris, but no way; full inbox. I'm pasting it here  ok?

 

 

Hi  Chris, I'm texting you because, for some unknown reason, notifications stopped coming to me. Now I've searched for any recent update in regard to you but not found other than some response to another member. 

How are you doing? What is your situation like at this moment. I wish it wasn't so unsteady as it used to be. You've been coping with this uncertainty for quite a long time, and despite your permanent concern, always so supportive and responsive to my questions, fears, etc...  

I'm sad to hear you lost your "young" cat and your dog isn't well, that's the back side of enjoying the company of our beloved pets: they leave. 

As for Paco, everything is ok so far. 

I hope now I'll hear from you as I've fixed my mobile "behaviour". If not, I'll check your profile updated 🕵️‍♂️.

Best,

Lola

 

User
Posted 15 Oct 2024 at 22:26

Hi Lola, I have cleared some messages from my in box. I have been posting to fellow members but it is a long time since I posted on my own conversation ,last one was back in July. There is nothing new to report really. Next PSA test is 18th November and see the oncologist a few days later. If the PSA is 3, I get another PSMA scan and see were we go from there. He did say there is a chance of spread and nothing big enough to detect. He did say we may need to have a conversation about HT.

I haven't gone six months between PSA test for a long time and my GP is being a little bit awkward, perhaps because I made an official complaint.

I still have the save attitude," it is what it is and worrying won't change things". If the next scan shows a tumor we zap it. If it is small clusters all over, I need to think about what next. Once I make a decision in my head, CJ comes along with words of wisdom and puts me back to square one and I wouldn't have it any other way.

Sadly the dog died a few months ago, the house is now pet free. We had our first trip away without the dog, we didn't need to take half as much stuff, but it was a bit empty without him.

Hope you are coping, take care.

Thanks Chris 

User
Posted 16 Oct 2024 at 07:26

Can't imagine life without dogs (currently 8).....It's a major logistics operation if we go away!

Good luck for the next PSA..

 

Edited by member 16 Oct 2024 at 07:27  | Reason: Not specified

User
Posted 19 Oct 2024 at 10:41

 Chris.

Congratultions on your journey thread breaking a hundred thousand views!

You're a PCUK stalwart and your posts are so helpful to others.👏

Well done, mate.

Edited by member 19 Oct 2024 at 10:58  | Reason: Additional text

User
Posted 19 Oct 2024 at 22:36

Adrian, by coincidence I started that conversation on October 19th 2015.

Thanks Chris 

User
Posted 15 Nov 2024 at 14:17

Had bloods done yesterday, now up to 6.7 from 1.4 six months ago, oh dear. See the oncologist next week. Probably another scan at Oxford we make stay a few days and do some site seeing 😀.

Thanks Chris 

 

User
Posted 15 Nov 2024 at 14:32

I'm very sorry, that your PSA has risen. It's about time your luck changed mate, you've had too many setbacks. Let's hope that this time they  find the source and eradicate it. 

Best of luck pal. 🤞

User
Posted 15 Nov 2024 at 15:22

6 months is quite a long time if it's not stable.  I think 4 months is a good compromise.  I go to the hospital for blood tests and with the form I can go any day I want to. The GP would likely want weeks of notice as they don't do a weekly clinic since Covid.

I think I'd be in some denial about such a jump although you never know.  You're being well looked after for scans and the like and I hope they find something worthy of a zap.

All the best Peter

User
Posted 15 Nov 2024 at 18:46

Sorry to hear that, Colwick Chris.  Hope that they can sort it out quickly.

Best wishes,

JedSee.

User
Posted 15 Nov 2024 at 19:02

Sorry to hear this Chris. Hopefully the scan will pick up something. 

Good luck. 

Kev.

 
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