Finished SABR

User

Posted 16 Dec 2021 at 05:58

Had SABR to three areas. My left 9yh rib, my hip ( both done at Preston ) and T4 on my spine, done at the Christie's.

I have an appointment with my Oncologist at Preston on the 17th Jan.

The Oncologist from Christie's rang yesterday ( 6 weeks since SABR to spine complete ) to say they were happy with the way the treatment went......I was really pleased to hear that.

Then the bombshell, just before the treatment to my spine, Christie's did a CT and MRI scans.

The MRI shows an area of concern on mt T1........they do not know if it is another site of cancer or nothing to worry about...........have to wait to see what my PSA is doing at my Jan appointment with my own Oncologist......not the best Christmas present,

I asked if it is cancer, could it be treated with more SABR, but told NHS only fund up to 3 areas.

He did say it may be possible to treat it with normal RT.

Does anybody know if it is cancer, could i get it treated with SABR privately? If so where and roughly how much?

Or is it likely to be the HT route ?

Shaun

User

Posted 16 Dec 2021 at 10:04

I can't get my head round this. You were told in July that the cancer was back and had gone to your bones, they have done SABR but you didn't go back onto HT immediately?

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

User

Posted 14 Jun 2022 at 16:43

Hi Shaun, Obviously not good that PSA is going up, but it has bobbed up and down for you in the past so all is not lost. It may be possible they can find another area to SABR, but if not I guess you can assume HT is the next treatment.

I think in the light of Chris J's inspiring thread, I would be considering how long I could go before taking HT.

It really would be a question of what you want from life and what risks are you happy to take.

Dave

User

Posted 29 Jun 2022 at 17:10

Sorry to see your PSA has risen and you have active bone mets Shaun. Hopefully the Zoladex will knock it on the head.

Ido4

User

Posted 17 Aug 2022 at 16:39

Great news Shaun, keep going mate.

User

Posted 17 Aug 2022 at 23:37

If the other sites were sorted by SABR I would try for another shot what have you got to lose?

User

Posted 23 Aug 2022 at 07:02

Until covid arrived, apalutimide was only available to hormone dependant men as part of a trial - it was only approved for castrate resistant PCa. This is possibly the only silver lining of the pandemic - you are being given the most recent drug available at a staging that wouldn't have been approved for years yet. It is hard to separate out the side effects of the apa from those of the zoladex.

Trials may not be the best thing for you right now as they may result in you not getting the apalutimide.

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

User

Posted 23 Aug 2022 at 13:41

Hello Shaun

Good luck with your treatment, keep positive and fighting.

I've been on Apalutamide and Zolodex for 20 months, the only major side effect for me is fatigue, especially in the afternoons, and the gift that keeps on giving ED ! I try and go swimming most days and find that helps.

My initial PSA was 383,but it has been untraceable for over 15 months.

Edited by member 23 Aug 2022 at 13:43 | Reason: Last line.

User

Posted 23 Aug 2022 at 15:23

We used to have a member called Old Al (he was 51 I think when I joined) who was initially so fatigued that he was in a wheelchair. He was involved in some research done by PCUK and took up swimming which ultimately got him out of his wheelchair and walking again. Phone the PCUK nurses and ask about their fatigue research findings - they may have lots of ideas and advice that you haven't thought of.

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

User

Posted 18 Oct 2022 at 05:16

Was the sabr done on the NHS in the end?

User

Posted 19 Oct 2022 at 11:27

Hi Shaun

It's great to hear good news when treatment is working and PSA dropping,let's hope this continues for you had my latest bloodtest yesterday will hear the results over the phone tomorrow,fingers crossed.

Fight the fight all💪

User

Posted 19 Mar 2023 at 07:40

Another good month.

PSA fallen again from 0.2 down to 0.12.

that’s after 9 months on zoladex +7 months on Appalutamide …PSA was 9.6😃

shaun

User

Posted 19 Mar 2023 at 08:28

Hi shaun

Great 👍 news about your psa drop,long may it continue,I've had a tad rise in the last couple of months but still low at 1.1 have CT scan booked in a few weeks so fingers crossed 🤞 on that one.

Regards Phil

User

Posted 08 Dec 2023 at 14:29

Latest PSA down to 0.05

Really pleased with that.

Told the nurse from the Appalutamide company I had achy joints ( known side effect of Appalutamide ), she said to try Devils claw .

I did and noticed a big difference after just two days

User

Posted 09 Dec 2023 at 08:34

Great PSA result Shaun, keep going buddy.

User

Posted 09 Dec 2023 at 09:39

Hi Shaun

That's great news with the PSA long may it continue.

Regards Phil

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User

Posted 16 Dec 2021 at 08:52

I don't know anything about private treatment. I do know Christie's have a private wing so I think you should start your search there.

I hope the T1 is nothing. I guess I have to agree with the NHS, they can't afford to play whack-a-mole more than three times.

Dave

User

Posted 16 Dec 2021 at 10:04

I can't get my head round this. You were told in July that the cancer was back and had gone to your bones, they have done SABR but you didn't go back onto HT immediately?

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

User

Posted 16 Dec 2021 at 11:46

Hi Lyn…. No not on HT…. The oncologist mentioned me going on to HT to wait till Preston were in a position to offer SABR to the spine….. they were only able to do SABR to my rib and hip that’s when she said she would refer me to Christie’s for my spine.

The referral letter to the Christie’s say the SABR is to try and delay the start of HT.

I am expecting her to put me on it in Jan

Shaun

Edited by member 16 Dec 2021 at 11:51 | Reason: Not specified

User

Posted 16 Dec 2021 at 12:23

Ah okay - if the new hotspot turns out to be cancer, palliative RT will be just as useful as SABR ... I am not sure that SABR would offer enough of a benefit to be worth paying for.

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

User

Posted 18 Dec 2021 at 11:04

i had SABR a few years ago ( two to the pelvic area and one to the 4th left rib) which seems to have worked ok.

i was also told that 3 areas of treatment were the maximum allowed due to financial constraints, so when it showed in my right rib I had to have chemo to sorted it out and I no longer have it in my bones,but after chemo it then appeared in my lymph nodes.

i don't know if they have warned you but SABR to the rib can sometimes result in a fracture of the treated rib many months after, which happened to me so be aware of this.

All the best

Roy

Edited by member 18 Dec 2021 at 11:05 | Reason: Not specified

User

Posted 11 Jan 2022 at 11:16

Just a quick update.

I have had my PSA done ready for my appointment with my oncologist next Monday.

!0 weeks ago my PSA was 9.5, it has now gone down to 8.2.

Feeling really pleased with that, just have to wait and see what the oncologist says and to see what she thinks about the " area of concern " Christie's mentioned on my T1......

Really hoping that this will keep me away from HT for a while longer.

Shaun

User

Posted 11 Jan 2022 at 22:31

Going down is always good.

Dave

User

Posted 19 Jan 2022 at 11:50

Hi, had an appointment with the Oncologist on Monday…..

she said while my PSA is stable…. It’s down from 9.5 to 8.2 after my SABR treatment….. she is not rushing towards starting HT yet…… happy with that.

Because of the comment from Christie’s about area of concern lower down on my spine, she has booked another MRI and a bone scan….. fingers crossed it turns out to be nothing……. Doubt it with my luck though….

so all in all quite happy with that appointment .

Shaun

User

Posted 26 Jan 2022 at 16:52

I now have metastases in my left side periaortic nodes and possibly in my C3 spinal process after being in remission for 10 years. Would this qualify for SABR treatment on the NHS?

At the moment I am responding well to Zoladex.

User

Posted 26 Jan 2022 at 22:18

They will treat up to 3 spots I believe, but is will also depend on having good access to the spot without something critical being too close, and being able to plan paths without tissues exceeding max lifetime dose if you've previously had RT.

You my have to push to get it though, and it may mean being referred to somewhere else that does it.

User

Posted 15 Mar 2022 at 16:35

Bit of good news

my bone scan came back clear

my PSA has gone down a bit again, down from 8.2 to 7.8 and that drop was in 2 months.

had a scan with contrast to, Thorax, abdomen and pelvic region…

I see the oncologist next Monday for results if that….

hopefully she still won’t put me back on HT😃

User

Posted 02 May 2022 at 14:07

Update.

saw the oncologist and my PSA has gone down again….. no treatment needed at present ….. next PSA in 2 months…

I’ll take that for now.😃

User

Posted 14 Jun 2022 at 15:39

Well, just had my latest PSA result… it’s started going back up… 3 months ago it was 7.8……. July of 2021, it had got up to 9.6…..

had 3 areas treated with SABR and it fell to 7.8.

it’s now back to 9.6 .

I see my oncologist next Monday so I’m expecting to be back on the HT.

Jan 2016 I was first diagnosed so I suppose I have had a good run.

Shaun

User

Posted 14 Jun 2022 at 16:43

I think in the light of Chris J's inspiring thread, I would be considering how long I could go before taking HT.

It really would be a question of what you want from life and what risks are you happy to take.

Dave

User

Posted 29 Jun 2022 at 08:26

Saw my oncologist on the 20th June..

my PSA had gone up from 7.8 to 9.6.

Thats where it was before SABR to 3 areas that finished Oct 2021.

At that time Christie’s said there was an area of concern on my lower spine, my oncologist had a bone scan done in Mar and was happy with the result and my PSA going down.

when I saw her this time ( Monday )even though my PSA had risen she said she wasn’t in any hurry to start HT as it was only a small rise. She thought it best to have another bone scan and an MRI.

3 hours after leaving her office I was offered a cancellation for my bone scan the next day ( Tuesday ). The following day I got a call asking me to go back and see the oncologist on the following Monday ( got a bad feeling about it ).

She tells us that the area of concern mentioned by Christie’s is now active and thinks it’s time to go back on Zoladex.

We asked about a fourth SABR , saying we were willing to pay private if we had to.

She was willing to ask about it at the next MDT and tell me the follow week. She then went in to say like last time ( if the MDT agreed , it would be 3-4 months to get a psma pet test done again and a bit more time before treatment started. In her opinion that would leave another 4-5 month of the active met on my spine spreading even more cancer around . She said in her heart she did not think it would change things and she honestly felt now was the time to try and put the cancer to sleep as she called it.

Reluctantly I agreed as I trust her judgement and she has thrown the kitchen sink at my cancer over the last 6.5 years.
so I started taking Bicaltamide before my first Zoladex injection.

I was then asked to take part in a genetic testing trial so I agreed…. Only had to give a saliva sample… was lucky as the trial closes on the 30th.

At the minute I’m looking to see if there are any other trials I could get on.

Bit worried about the Zoladex , as last time it took the 2.5 years I was on it to get it from 24.6 yo 0.03

Shaun

User

Posted 29 Jun 2022 at 17:10

Sorry to see your PSA has risen and you have active bone mets Shaun. Hopefully the Zoladex will knock it on the head.

Ido4

User

Posted 16 Aug 2022 at 20:50

Happy days.

6 weeks after my first Zoladex injection , my PSA has fallen from 9.6 to 2.1.

I see my oncologist next week

shaun

User

Posted 17 Aug 2022 at 16:39

Great news Shaun, keep going mate.

User

Posted 17 Aug 2022 at 23:37

If the other sites were sorted by SABR I would try for another shot what have you got to lose?

User

Posted 18 Aug 2022 at 09:51

I have already had 3 areas treated with SABR and that is all the NHS will fund ( I understand they have to draw the line somewhere ), I asked about getting it done privately at the Christie’s …..

My oncologist was willing to take my request to the next MDT meeting and refer me if they thought it was appropriate….. she was very doubtful that they would. Even if they did I would have to have another PSMA pet scan and like last time she said the waiting list is 3-4 months….
So by the time ( if ) we got it treated , we could be looking at up to 5+ months of the cancer having chance to spread even further.
Her advice was to restart HT immediately .

Im kind of torn, I understand where she’s coming from, but part of my brain is wishing I had pushed for it.

My oncologist over the almost 7 years has been brilliant and I do trust her..

There will alway be part of me thinking, maybe I should of tried…..

Hopefully the HT will hold it back for a long time.

Who knows what new developments come up in the future.

I have a whole spine MRI today and see my oncologist next Monday.

Hopefully that won’t bring anymore bad news.

I will also get the results of the genetic test I agreed to participate in.

Lets see what that has to show.

Will update this thread after that.

Shaun

User

Posted 23 Aug 2022 at 05:49

Saw the oncologist today….. more bad news, the MRI has shown another hot spot at the top of my spine again………

I did think they had seen something as I was in the MRI machine an hour and not the 40 mins they said it would be.Apogising, they said they’d had to do a couple more scans than expected.

So it shows her judgement about more SABR was right.

Started on Apalutemide along side the Zoladex …… told that adding it makes the HT work for longer .

Anyone else going down this route?

If you are, have your side effects increased ?

Does anyone know of any trials going on for people at this stage of progression?

The results of the genetic test came back negative

Shaun

Edited by member 23 Aug 2022 at 05:54 | Reason: Missed something

User

Posted 23 Aug 2022 at 07:02

Trials may not be the best thing for you right now as they may result in you not getting the apalutimide.

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

User

Posted 23 Aug 2022 at 09:46

Thanks for the reply Lyn.

I know I’m lucky to be getting it …. Hopefully it will make the Zoladex work for longer.

Shaun

User

Posted 23 Aug 2022 at 13:41

Hello Shaun

Good luck with your treatment, keep positive and fighting.

My initial PSA was 383,but it has been untraceable for over 15 months.

Edited by member 23 Aug 2022 at 13:43 | Reason: Last line.

User

Posted 23 Aug 2022 at 13:51

Thank you Stuart… I’m so pleased to hear that you are doing so well. Long may it last.

I need to start doing more stuff like swimming….. on grandad duties for the next two weeks then I will make a big effort to get fitter.

Shaun

User

Posted 23 Aug 2022 at 15:23

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

User

Posted 23 Aug 2022 at 16:37

Thanks Lyn.

I will ring them tomorrow..

Shaun

User

Posted 20 Sep 2022 at 10:38

PSA now down to 1.5 from 2.1 four weeks ago…. Really pleased with the progress 😃😃😃😃😃😃

User

Posted 17 Oct 2022 at 23:22

Latest PSA, it's down to 0.88, I'm made up with that.

Not too many problems with the side effects of the Zoladex and Apalutamide.

Although over the last two weeks I have started to suffer with anxiety, expecially in crowded places.

Feel really well in myself at the minute.

We have sold our motorhome and bought a static, I so looking forward to spending time in it.

Shau

User

Posted 18 Oct 2022 at 05:16

Was the sabr done on the NHS in the end?

User

Posted 19 Oct 2022 at 07:51

Hi Francis.

No, in the end I decided to go with my oncologists instinct that there would be more hotshots and she was proved right, as well as the area of cancer on the base of my spine e, my latest mri also showed another at the top of my spine.

I agreed to st back on Zoladex and two months later ( to my surprise she added Apalutamde ).

After 4 months on Zoladex, my psa is down from 9.6 to 0.88 and apart from fatigue I feel really well. Although I have had a couple of anxiety episodes in busy shops. Never had anything like that before.

Shaun

User

Posted 19 Oct 2022 at 11:27

Hi Shaun

Fight the fight all💪

User

Posted 27 Oct 2022 at 13:20

Hi Phil.

I hope you got a good result pal.

Shaun

User

Posted 03 Jan 2023 at 14:17

Latest PSA result just before Christmas 0.33……. Over the moon with that.

Just had my 3rd Zoladex injection and 4 months on Apalutamide….

side effects are hot flushes and fatigue .

I’ll take that….. feel like I have a good QOL and enjoying life…..

we sold our motorhome and bought a static at the end of Oct and it’s given my wife and myself a whole new lease of life.

This disease has taught me to try and chill and enjoy every day.

I still miss working but at least I have my once a week radio show… although getting up at 4am to do a breakfast show is tiring, I love it.

Enjoy life and live it to the full.

Shaun

User

Posted 03 Jan 2023 at 18:03

Hi shaun

Great to hear your doing well and psa staying low,I like yourself am feeling pretty good considering what I have. OK I get hot flushes,almighty sweats in night sometimes a nausea feeling and bone ache here and there just too remind me it ain't gone away,but I'm still doing all that I did before in this last month other than you know what in the bedroom!!!I feel perhaps that after 4 months enza is really in my system now.I have a blood test in a few more weeks so will post results when I know,good luck for the future shaun.

Regards Phil

User

Posted 03 Jan 2023 at 19:27

Thanks Phil and good luck to you ..

Please let me know how you get on.

Shaun

User

Posted 23 Feb 2023 at 09:24

Latest PSA result…… down to 0.2 from 0.28 last month….

Really happy with that. Zoladex and Appalutamide seem to be a great team.

Great to also have the monthly monitoring by the Appalutamide nurse…. She is happy enough that after next months appointment , she will stretch the appointments to 6 wks😃

Shaun

User

Posted 19 Mar 2023 at 07:40

Another good month.

PSA fallen again from 0.2 down to 0.12.

that’s after 9 months on zoladex +7 months on Appalutamide …PSA was 9.6😃

shaun

User

Posted 19 Mar 2023 at 08:28

Hi shaun

Great 👍 news about your psa drop,long may it continue,I've had a tad rise in the last couple of months but still low at 1.1 have CT scan booked in a few weeks so fingers crossed 🤞 on that one.

Regards Phil

User

Posted 19 Mar 2023 at 14:26

Hi Phil.

Hopefully the rise is just a blip and that your CT scan brings good news.
Scans and PSA tests are always a worry.

let me know how you get on.

Shaun

User

Posted 08 Dec 2023 at 14:29

Latest PSA down to 0.05

Really pleased with that.

Told the nurse from the Appalutamide company I had achy joints ( known side effect of Appalutamide ), she said to try Devils claw .

I did and noticed a big difference after just two days

User

Posted 09 Dec 2023 at 08:34

Great PSA result Shaun, keep going buddy.

User

Posted 09 Dec 2023 at 09:39

Hi Shaun

That's great news with the PSA long may it continue.

Regards Phil

User

Posted 20 Dec 2023 at 15:33

Hi Phil.

How you doing with your treatment?

User

Posted 09 Jan 2024 at 17:15

PSA latest result still 0.05 .

so it’s not gone down since last one 6 weeks ago.

Still over the moon with it though.

Shaun

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