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User
Posted 15 Nov 2024 at 20:13
Not what you wanted.. good news is it's taken over 10 years to get back to what is was when you started AND apart from a sniff of bicalutimide it's still HT naive.

Dr Kwon might suggest giving it the works (chemo + 2nd line HT) and then aim for intermittent HT. Will be interesting to see what the scan finds and what your onco suggests.

User
Posted 21 Nov 2024 at 20:57

Hi guys, thanks for your replies and support. Saw the oncologist this afternoon, he is arranging another PSMA scan followed by another appointment with him. Should get the results just before Xmas, I got my original diagnosis just before Xmas 11 years ago 

It was quite a bizarre meeting we had a bit of a laugh and joke about things. I imagine giving people bad news must put a strain on the doctors and nurses.

Thanks Chris 

User
Posted 22 Nov 2024 at 00:01

Sorry to see this Chris, I’m sure they will be able to get a plan in place for you. You’ve done amazing all these years and I’m sure that will continue 👍 hope you can get your scan soon x

User
Posted 18 Dec 2024 at 19:28

Well another cancerversary today, 11 years since I was told "you have prostate cancer". Tomorrow I see the oncologist following last weeks PSMA scan. Either way it will be more treatment on offer, hoping it's more SABR treatment but suspect it may be HT on offer. Will update tomorrow.

Thanks Chris 

User
Posted 18 Dec 2024 at 19:33

Good luck chris, hope things are positive tomorrow. 

Let's keep on marking these cancerversaries.

Best wishes, mick. 

User
Posted 18 Dec 2024 at 19:48

Hope everything goes the best way , Chris. 

Continúe to stay strong.

XX

User
Posted 18 Dec 2024 at 21:40

Another milestone Chris.

Stay positive, you're a mine of helpful information on here, and long may it continue. 

I hope it all goes well tomorrow. 

Cheers, 

Kev.

 

Edited by member 18 Dec 2024 at 21:43  | Reason: Typo

User
Posted 18 Dec 2024 at 22:04
Good luck!
User
Posted 18 Dec 2024 at 22:13
Good luck Chris, hope it's what you prefer

Cheers

Bill

User
Posted 19 Dec 2024 at 18:08

I did think of starting a new thread, with a new title. Looks like I have moved into another phase. The results of the PSMA scan show spread to a number of lymph nodes right up to the neck. SABR is not on offer. An "off piste" choice is lutetium 177, but that would require approval from a specialist and my insurance company. 

Aabiraterone and prednisone are the other option. I have said I need time to think, so seeing the oncologist in January.

Thanks Chris 

User
Posted 19 Dec 2024 at 20:33

Sorry Chris, not what you wanted to hear.

Lutetium 177 is an interesting option. Historically it's been used later on, but there's always been much speculation that it might work significantly better if done earlier. There might even have been some trials on this.

User
Posted 19 Dec 2024 at 21:38

Andy, thanks, the oncologist did stress "if" approved it was not the usual route to take. I always thought it was a later resort treatment. Perhaps like some treatments, a stitch in time saves nine.

Thanks Chris 

 

 

 

User
Posted 20 Dec 2024 at 04:53

Hi Chris.

I'm so sorry that the results weren't what you wanted. You certainly deserve a change of luck. I can only hope that what ever treatment you or they decide is effective. 

User
Posted 23 Jan 2025 at 23:03

So had my telephone consultation with the Lutetium177 guy this evening. In short I won't get it. A few reasons  he cannot give a valid case to the insurance company. He doesn't think he could get it past the MDT. Probably more than anything he does not think my kidneys are up to it.

My home oncologist is talking Abiraterone, the lut177 guy is suggesting zoladex.

I await the next appointment, fortunately I hadn't set my heart on lut177.

Thanks Chris.

Edited by member 24 Jan 2025 at 01:28  | Reason: Not specified

User
Posted 24 Jan 2025 at 09:17

Sorry to hear that Chris. You can at least tell yourself that you have been proactive and sought out all possible therapies for your ongoing treatment. A significant risk of kidney damage has to be a showstopper. Chris 

User
Posted 25 Jan 2025 at 08:06
Just a thought, you are now 75? With no symptoms.

What about doing nothing until you actually get symptoms? Has any oncologist explained what difference HT will make to life expectancy if given early or late?

User
Posted 25 Jan 2025 at 08:41

Franci , 73 , thanks for your alternative possibilities , I had had some similar thoughts . I did do a lengthy reply but  despite my usual precaution it disappeared.

Thanks Chris

 

User
Posted 25 Jan 2025 at 15:48

Franci, apart from some usual aches and pains I feel fine in myself, strangely 11 years ago I had a similar thoughts ,why put myself through all these treatments.

The oncologist did say I could wait but we would need to set thresholds. He did say waiting would be a risk or detrimental to the outcome. My PSA on 15 November 2025 was 6.7 with a doubling time of 2-3 months, at 2 months doubling I would now be 13ish. I often see 20 can mean spread to bones.  He says he should keep the cancer under control for 4 to 5 years.He also mentioned having guys on Prednisone who report never feel better, I think we still have some left from when the can was on it. 

I see him in a few days ,the insurance company say they will fund Abiraterone for two years after which the NHS should fund it. If I don't get on with it I can always stop. 

Thanks Chris

User
Posted 07 Feb 2025 at 17:09

Hi, I start my 50mg of Bicalutamide today, zoladex in 2-3 weeks. Abiraterone in 3 months but a call from the insurance company put that in doubt. PSA now 13.4 , guess its getting serious now. 

You can't accuse me of being inconsistent,  I said at the start I wasn't having surgery ,I did. I said I wasn't have salvage RT ,I did.  I definitely wasn't having long term HT ,I am.

Thanks for all the support you guys and gals give. Special thanks to CJ.

Thanks Chris

User
Posted 07 Feb 2025 at 18:12

Fingers crossed the HT gives you an easy ride. 

User
Posted 07 Feb 2025 at 18:22
Chris , you’re doing the right thing , but the right thing has to be done at your right time. You and I have fought so hard to maintain our QOL and quite rightly. There is no right or wrong time to select or reject treatments. It just has to feel right to you.

We are both 10 years now and others that have taken all the treatments early haven’t fared so well sadly. Just go with it buddy and I hope it works. I’ve had 4 years of injectable HT now but its efficacy is waning. Let’s hope it knocks your psa right back for a good while. And in true CJ style I just said no to upfront Enza or Abi so don’t worry too much. Keep in touch and keep well. Keep moving and eat what the hell you want 👍

User
Posted 10 Feb 2025 at 19:45
Sorry its reached the point of HT Chis as know you really wanted to avoid it. But here’s hoping it knocks back the PSA for many years to come

All the best

Bri

User
Posted 11 Feb 2025 at 16:27

I hope the HT and Abiraterone knock things back and that you’re QOL is still good.

Sorry you’ve reached the point these drugs are necessary. 

Ido4

User
Posted 11 Feb 2025 at 19:01
I hope the treatment works well for you Chris without to much effect from side effects.

Wishing all the best.

Cheers

Bill

User
Posted 12 Feb 2025 at 07:14

Hi Chris, 

Good luck with the HT, keep fighting. 

Kev.

User
Posted 12 Feb 2025 at 14:26

Best of luck Chris on the new regime. Let’s hope it works and for a very long time. 👍

Phil

User
Posted 12 Feb 2025 at 20:13

Hi Chris , it’s been a while . I know you don’t want to be starting meds now but as an example I have been on zoladex 10 years and abiraterone 9 years and next week I am running 250k in the Arctic on my 60th birthday . Life can be excellent on hormone drugs , hope it is for you as it has been for me . PSA was 342 in 2014 , today’s results 0.11 . Always rooting for you .

Edited by member 12 Feb 2025 at 21:02  | Reason: Not specified

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 12 Feb 2025 at 21:23

Kev , thanks for your reply, that is encouraging news on the side effects. The biggest problem at the moment is getting the logistics sorted. My insurance company ,GP and oncologist are three separate entities and are not joined up. 

My daily  exercise is about 45  minutes walking a day , I can see I am going need to put a bit more effort in, if the knee will permit it.

Thanks care.

Thanks Chris 

User
Posted 21 Feb 2025 at 19:44

Hi Guys, I had my first monthly zoladex yesterday morning (20/2/25).  I assume it is a slow release drug, but just wondered how long it might take to feel any effects. The injection was painless ,I skipped the numbing cream. I thought there might at least have been a slight twinge at the injection site.

Thanks Chris

Edited by member 21 Feb 2025 at 20:42  | Reason: Not specified

User
Posted 21 Feb 2025 at 23:08

Yes Chris, for a week or so you might think it doesn't do much but it kicks in quite strongly after that. As you've no doubt read, it's effects are different for everyone. I hope it's kind to you.

Jules

User
Posted 22 Feb 2025 at 06:56

The first injection takes a couple of weeks before it starts reducing your Testosterone.

I asked my GP why they used Zoladex, and they said it was because it caused the fewest injection site issues.

User
Posted 22 Feb 2025 at 16:36

45 minutes is good.  Just keep it steady, one injury can put you out of walking for weeks.  Sitting on a dining chair and standing up a few times is a good exercise as is climbing stairs.  But being outside is doubly good.

Good luck with your treatment.  Peter

User
Posted 22 Feb 2025 at 17:41
Chris you’ve done the right thing ok. I swear it can all be overcome and it’s not that bad. I know you believe me. It’s given me at least 4 more years from where I was and they’ve been full happy years with new activities. All best wishes to you ok

Chris

User
Posted 05 Apr 2025 at 10:41

Just a bit of update and a question.

For those not familiar with my history, surgery 2014 SRT 2017. Further 2 SABR x5 treatments in the last couple of years.

31/01/2025 PSA 13.4

7/2/2025 start 50 mg Bicalutamide for 28 days.

20/02/2025 first zoladex.

20/03/2025 changed to 3 month decapeptyl due to dispute about private and NHS care agreement.

Possibly starting Abiraterone or similar begining of may.

31/03/2025 PSA down to 0.89

PCUK nurse says 0.89 is good, just wondering what experience of PSA levels you guys have had after similar treatment.

 

User
Posted 05 Apr 2025 at 11:11
I eventually started Deca 4 yrs ago. My psa was over 1000. It nadired at 0.44 Chris. Has risen since to 0.75 but the trend is up. I declined abi or Enza based on QOL. Keep well mate
User
Posted 06 Apr 2025 at 17:25
Hopefully it will go lower given a bit more time I believe a less than 0.1 is an optimum response for HT. Don't forget to get your testosterone checked to make sure that has dropped to target.

User
Posted 06 Apr 2025 at 17:25
Hopefully it will go lower given a bit more time I believe a less than 0.1 is an optimum response for HT. Don't forget to get your testosterone checked to make sure that has dropped to target.

User
Posted 28 Apr 2025 at 07:50

Well today is the 11th anniversary of my prostate removal and the hope of a "cure". Now on decapeptyl and I don't think it is doing my mind any favours. Still not started whatever else they are going to give me.

Lots of people have come and gone since l joined this club, sadly some didn't have a choice. Take care of yourselves. 

Thanks Chris 

User
Posted 28 Apr 2025 at 08:09
I know it's been a rollercoaster since that day, and you've been so resilient; in addition, really supportive to others. You deserve something better. But anyway you seem to be unbeatable, Chris, so, please, stay strong and keep on going and, despite the inconvenience of this F**** beast, try to enjoy each day of your life Xxx

Best🙏

Lola

User
Posted 28 Apr 2025 at 08:12

Glad you're still with us after 11 years Chris. I hope you're still here for a lot longer yet!

Ian.

User
Posted 28 Apr 2025 at 11:26

You have been an inspiration to others over those 11 years Chris. You certainly have to me over the last four years. I wish you the best of fortunes going forwards. Chris 

User
Posted 28 Apr 2025 at 13:38
Keep at it Chris...
User
Posted 28 Apr 2025 at 17:18
Chris you’ve been an utter rock to me especially in the early days. June sees in my 58th birthday and ten years from removal and 11 years from diagnosis. And mate 4 1/2 years of Decapeptyl , although it is starting to fail now. All the very best to you and as good luck as I’ve had. I’m gunning for you Chris
User
Posted 28 Apr 2025 at 19:05

Despite your own health problems , you always find to time to help others with theirs. You're a top bloke Chris. 👍

User
Posted 28 Apr 2025 at 19:53

Originally Posted by: Online Community Member

Despite your own health problems , you always find to time to help others with theirs. You're a top bloke Chris. 👍

Top bloke indeed. You helped me so much in my early days of self catheterisation. You are the catherter expert on this site. Just so sorry about how you became the expert. Can't thank you enough.

Good luck with your treatment going forward.

Thanks again

Cheers

Bill

Edited by member 28 Apr 2025 at 21:37  | Reason: Not specified

User
Posted 28 Apr 2025 at 23:54

Thank you all, very kind of you and thank you for all the support you give me and all the rest of us on here. 

I see a different oncologist next week and we will see what additional medication I will start , Abiraterone and prednisolone was the plan.

CJ, how have you got in with the Decapeptyl. I struggle to sleep at night, yet can fall asleep during the day. I certainly don't have fatigue but strength and stamina is definitely suffering, but that may be an age thing.I am feeling a bit down, but I am less anxious about recurring issues that used to bother me, (like wife and daughter falling out).

Biggest problem is Brain fog, the short term memory is particularly bad. A couple of examples, I pick up the mobile phone to check for an Amazon delivery, but when I open the phone I get distracted by a face book message, then I can't remember why I picked the phone up. This morning I was cleaning my teeth,and thought I need to blow my nose, after cleaning my teeth, I stood there and thought "what was I going to do". These sort of things happen numerous times during the day. 

Sorry your meds are starting to fail, at least you gave it a good go.Take care.

Adrian, great work you are doing in the virtual pub. 

Thanks Chris 

User
Posted 29 Apr 2025 at 06:05
Chris I think Deca is one of the kinder ones if that’s possible. Some side effects were rapid and others have just worsened with the years. Joint pain in my legs and knees has been quite tragic tbh. The worse effect for me. Recently creeping into hands and thumbs. Brain fog is terrible so it’s not just your age. I get confused about stuff like simple arithmetic now.

The fatigue took longest to kick in. Week by week I seem to need a day nap which has been unheard of my entire life.

And sleep has always been an issue in my life. I take red wine for that disorder 🤣.

Weight gain has been extremely minimal in this period.

Keep it up Chris , and yes you become a way more chilled person about everything. It helped me !!

User
Posted 08 May 2025 at 21:27

Hi guys, after the ongoing saga of shared care and not mixing private health care with the NHS , I saw a different oncologist today. 

After a lengthy consultation, I start apalutamide tomorrow. I also will continue the 3 monthly decapeptyl. 

So my GP has saved a few quid and cost the NHS thousands for the drugs.

Thanks Chris 

 

Edited by member 08 May 2025 at 21:28  | Reason: Not specified

User
Posted 09 May 2025 at 05:29

I went off to bed last night with my apalutamide and started to read the leaflet. The are some serious 1 in 10 side effects. So it started me wondering, I have to take 4 tablets at the same time. Did anyone start with 1,2 or 3 tablets and build up to the full dose, or did you go straight in for the full four tablets. Just wondering if it was better to ease into the tablets. Is there a better time of day to take them.

The oncology nurse present at the consultation, said I could delay taking them until we return from a short break in the UK. Does it also make sense to wait for the precautionary blood test results to come back. 

I will have a chat with my nurse or the site's nurses but just interested in your thoughts.

Thanks Chris 

User
Posted 09 May 2025 at 07:57
I might have missed it but why the change from Abi to Apalutimide? Is that modern thinking from the new Onco?

If your trip is imminent I am sure the drugs can wait as you are already on a hormone blockade.

 
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