That was not in the plan.

User

Posted 12 Feb 2024 at 13:54

What's wrong with my post or with me? Have I said or done anything improper? I was just sharing my joy for your result.

I'm totally confused.

Lola.

User

Posted 12 Feb 2024 at 14:30

Hi Lola.

I think Chris was referring to the post before yours (not your post)

Jeff.

User

Posted 12 Feb 2024 at 15:02

Oh, so you (he) mean "between that X's post and my post. I got it like "the conversation between Chris and Lola". My misunderstanding. I'm afraid I need to improve my comprehension of English.

Thanks, Jeff.

Have a nice evening.

Lola

User

Posted 12 Feb 2024 at 16:53

Originally Posted by: Online Community Member

Oh, so you (he) mean "between that X's post and my post. I got it like "the conversation between Chris and Lola". My misunderstanding. I'm afraid I need to improve my comprehension of English.
Thanks, Jeff.
Have a nice evening.
Lola

Lola , perhaps it is me who needs to improve my English, in hindsight I can see it was a little misleading. Someone had used the quote reply to duplicate my post and added some dubious links into. My apologies for the confusion, I am always grateful for the support you and others have given me over the years. Hope we are still friends 🙂.

I left my phone at home this afternoon,so have only just seen the messages.

Thanks Chris

Edited by member 12 Feb 2024 at 16:55 | Reason: Not specified

User

Posted 13 Feb 2024 at 15:53

No, Chris, it was me. I was afraid my post was excessive as I recognise I tend to be extremely emotional (I'm Latin and and Mediterranean) when it comes to expressing feelings. And actually, I was glad when I read your update. Those in the same journey are aware of the relevance any result or medical opinion has for us.

Big hug

User

Posted 28 Apr 2024 at 07:31

Another anniversary, it is ten years ago today that I had my prostate removed, it's not been a simple journey but it has helped having the support of you lovely people on here. I have met some of you and sadly lost some of those that we met. The trolls tend to resurrect old posts and some old names pop up. Another few weeks and I will have a good idea how well the last two SABR have treatments worked.

Wishing you all well.

Thanks Chris.

User

Posted 28 Apr 2024 at 08:11

You have had a tough journey Chris but you are still there and fighting. I value your contribution to this community. Long may it continue. Fingers crossed for the next PSA.

User

Posted 28 Apr 2024 at 08:46

Ten years and still fighting Chris, I hope SABR has worked. Good luck with the next ten years.

Cheers.

Kev.

User

Posted 28 Apr 2024 at 12:16

Hoping you get good results following your last two SABR treatments Chris 🤞

with best wishes,

Ange x

User

Posted 28 Apr 2024 at 14:39

Hope things work out well Chris. We are both ‘old-timers’ now. I’ll be 9 years in June and you were there for me from day one. Your support was immense and much appreciated 👌

User

Posted 28 Apr 2024 at 17:37

You have had a tough time Chris. But you’re still here and that is really good to say the least.

You have had support and friendship on the forum as you say, but you’ve also been a great support to others.
Here’s to many more anniversaries.

Ido4

User

Posted 28 Apr 2024 at 20:31

Colwick Chris,

Best wishes to you. I read all of your posts with great interest. You are an inspiration.

Jed See.

User

Posted 30 May 2024 at 20:05

Thanks as always for your continued support.

Just an update, bloods done 22 May, came back as 1.4 that's up from 0.44 four months ago,I worked out the doubling time to be 2.4 months. GP sent email "Normal,no further action",my patient record says refer to urology if it reaches 1.0. I have lodged an official complaint.

I saw the oncologist this afternoon, he offered me another PSMA scan at a local facility rather than a 220 mile road trip to Oxford. I opted for the Oxford centre as they do the Gallium 68 tracer as opposed to the F18 1007 tracer used locally.

Depending on the outcome of the scan we may do some more SABR treatment. He knows I don't want long term HT but has said we won't go into that minefield until it is the only option. I have said to him "don't want" isn't "won't have" 🙂, I have a proven track record for changing my mind.

So a bit more waiting.

Thanks Chris

User

Posted 30 May 2024 at 20:18

Fingers crossed for you Chris. Hope the plan goes in your favour.

Good luck.

Kev.

User

Posted 30 May 2024 at 20:42

Wise men change their mind.

Good that you're going for another PSMA, in case there were any spot it could be easier to target and eliminate, but I hope there won't be any.

Good luck, Chris.

User

Posted 30 May 2024 at 21:05

Originally Posted by: Online Community Member

Wise men change their mind.
Good that you're going for another PSMA, in case there were any spot it could be easier to target and eliminate, but I hope there won't be any.
Good luck, Chris.

Hi Lola, thanks for your thoughts. He did say we may not see anything. He also said I was assuming they would find another tumor in a lymph node. He then said there is no doubt you have cancer somewhere.

Thanks Chris

Edited by member 30 May 2024 at 21:12 | Reason: Not specified

User

Posted 31 May 2024 at 08:05

Originally Posted by: Online Community Member

GP sent email "Normal, no further action",my patient record says refer to urology if it reaches 1.0. I have lodged an official complaint.

It's really not good enough. It's exasperating having to check that your treatment plan is being followed correctly.

Best of luck with your next scan Chris, and resultant procedures.

User

Posted 31 May 2024 at 21:06

Sorry to hear this, Chris.

Take good care of yourself. You give a lot of support to others on this forum. Many of us will be here to support you in turn.

Best wishes,

JedSee.

User

Posted 01 Jun 2024 at 09:01

Hi Chris, sorry about the increase, fingers crossed whatever they may find will be an easy fix. Re hormrone treatment, its not always the beast that some say, I have been on abiraterone for 8.5 years, zoladex 9 years, minimal side effects that bother me. Enjoy today and every day.

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User

Posted 01 Jun 2024 at 09:01

Hi Chris, sorry about the increase, fingers crossed whatever they may find will be an easy fix. Re hormone treatment, its not always the beast that some say, I have been on abiraterone for 8.5 years, zoladex 9 years, minimal side effects that bother me. Enjoy today and every day.

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User

Posted 01 Jun 2024 at 20:33

Sorry to hear about the rise Chris. So frustrating re the GP. Hopefully the next scan will detect the rogue cells.

Chris what’s the difference with the two tracers

Take care

Bri

User

Posted 01 Jun 2024 at 22:43

Originally Posted by: Online Community Member

Sorry to hear about the rise Chris. So frustrating re the GP. Hopefully the next scan will detect the rogue cells.

Chris what’s the difference with the two tracers

Take care
Bri

I have now got an official complaint going with the GP surgery, I was told to put my complaint in an email to the practice manager, on a follow up call I asked for an appointment with the practice manager, the reply was "we don't have one at the moment" .

As regards the difference in the scans I don't really know, I opted for the Gallium for a few reasons. The F18 appointment locally was cancelled due to the tracer production problem. At Oxford they said it was very rare for their G68 tracer to fail.

The F18 only saw one tumor but the G68 picked up the second tumor 10 months later and still saw activity in the first tumor. So my thought was either the G68 was better or this cancer is not as slow growing as we think.

If you go to page 10 of this conversation and scroll down a few posts there were a few contributions to the difference between the tracers

I hope your SABR has worked well for you.

Thanks Chris

User

Posted 02 Jun 2024 at 09:08

Sorry to hear about your increased PSA Chris, I hope you can find out why and get it resolved. It’s really bad that your GP behaved in this way, I’ve found you’ve got to be so proactive on this journey to ensure you get the best level of care.

With regard to long term HT some men seem to manage on it without any issues whilst some(like me😩) seem to get every side effect going, so I hope if it is required for you that you are one of the lucky ones.

Good luck!

Dereh

User

Posted 02 Jun 2024 at 20:26

Hi Chris,

Your G.P. Practice Manager needs a serious talking to. "No appointments available"?? That's appalling.

Stay strong.

Best wishes,

JedSee.

User

Posted 02 Jun 2024 at 21:55

Originally Posted by: Online Community Member

Hi Chris,

Your G.P. Practice Manager needs a serious talking to. "No appointments available"?? That's appalling.

Stay strong.

Best wishes,

JedSee.

Sorry, I wasn't very clear she meant ,we don't have a practice manager at the moment ☹️.

Thanks Chris

User

Posted 03 Jun 2024 at 20:50

Thanks Chris, for the clarification re: the Practice Manager's lack of availability.

I was getting on my hobby horse...:-).

Take care of yourself.

JedSee.

User

Posted 04 Jun 2024 at 16:41

Hi Chris,

Your oncologist sounds a good one. To persevere with PSMA scans, having options on which type and then talking about SABR treatment sounds like they're fighting for you

It's always good to hear and such information is useful if pressing for treatment for others. All the best Peter

User

Posted 04 Jun 2024 at 22:30

Originally Posted by: Online Community Member

Hi Chris,

Your oncologist sounds a good one. To persevere with PSMA scans, having options on which type and then talking about SABR treatment sounds like they're fighting for you

It's always good to hear and such information is useful if pressing for treatment for others. All the best Peter

Thanks Peter, my wife has family health insurance so we did switch to the private sector. It is unfair but you do get more options if you have insurance or can afford to pay.

Thanks Chris

User

Posted 06 Jun 2024 at 23:29

Sorry to hear it's gone up again, the rise seems like bit of a sea change too. Is there any chance it's PSA released by dying cells after the RT??

PSMA scan is a no brainer IMHO..

User

Posted 06 Jun 2024 at 23:45

Franci, I did ask that question but he said not likely. He said he expects further spread. PSMA booked for 23rd of June, I could have had it done next week, how different things are when you or your private insurance pays for it. Going kite flying next week so something to distract the mind,not that I worry about it.

Thanks Chris

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.

Notification

Join the online community now.