Finished SABR

User

Posted 18 Aug 2022 at 10:51

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 06:49

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 06:54 | Reason: Missed something

User

Posted 23 Aug 2022 at 08:02

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 10:46

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 14:41

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 14:43 | Reason: Last line.

User

Posted 23 Aug 2022 at 14:51

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 16:23

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 23 Aug 2022 at 17:37

Thanks Lyn.

I will ring them tomorrow..

Shaun

User

Posted 20 Sep 2022 at 11:38

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

User

Posted 18 Oct 2022 at 00:22

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 06:16

Was the sabr done on the NHS in the end?

User

Posted 19 Oct 2022 at 08:51

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 12:27

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 27 Oct 2022 at 14:20

Hi Phil.

I hope you got a good result pal.

Shaun

User

Posted 03 Jan 2023 at 15:17

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 19:03

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 20:27

Thanks Phil and good luck to you ..

Please let me know how you get on.

Shaun

User

Posted 23 Feb 2023 at 10:24

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 08:40

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 09:28

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

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