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Salvage radiotherapy

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User
Posted 03 Jul 2019 at 22:27
Bank it and celebrate!

I was < 0.1 after about the same time scale post HT and an even better result four months later so the good news doors are open for your future!

User
Posted 04 Jul 2019 at 17:35
Good news, keep that going and enjoy the success.

Ray

User
Posted 04 Jul 2019 at 19:21
Good news. You’ve thrown everything at it for sure so here is hoping all the best for you.
User
Posted 04 Jul 2019 at 21:56

Great news, hope it continues.

Thanks Chris

User
Posted 08 Jul 2019 at 14:57
What did the onco say?
User
Posted 08 Jul 2019 at 22:39

Oncologist today was happy with numbers but thinks the hormone suppression is still in place. To quote “We don’t have an answer yet as to whether the SRT has worked as I think you are still suppressed. We won’t know for another six months at least as you were on HT for over 2 years.”

I had reasoned that myself so the jury is still out and I will see him again 6/1/20.

I mentioned my arthritis was flared and he told me HT “dries” out the joints and can cause symptoms to get worse. I hadn’t heard that before.

 

Ido4

User
Posted 09 Jul 2019 at 00:29

Originally Posted by: Online Community Member
I mentioned my arthritis was flared and he told me HT “dries” out the joints and can cause symptoms to get worse. I hadn’t heard that before.

I've just been asked if HT can cause arthritis in the hands by someone on Zoladex who doesn't use the Internet, so would be interested to hear any more about this.

User
Posted 09 Jul 2019 at 06:23
Cheers Ian

Did you not get a T test as part of your first key check up? I got one by default and six months after my last jab it was twice what it was five years ago.

User
Posted 09 Jul 2019 at 09:09

Thanks PP, I haven’t had my T tested ever so will ask about this.

Andy62, the oncologist didn’t really expand on the arthritis thing other than to say it can cause joint flare ups. Sorry I can’t add anymore.

 

Ido4

User
Posted 09 Jul 2019 at 09:15
Good idea. The thing is that he THINKS you are still low T. That is not a replacement for actually knowing. Surprised he did not ask for one. I would ring up and request one and if they say no, ask your GP.
User
Posted 07 Aug 2019 at 13:43

I got my testosterone result today. On Wednesday 24/7 it was 5.5 nmol/l.

Normal range is 10-30 nmol/l according to my GP.

I would appreciate thoughts on this.

Ido4

User
Posted 07 Aug 2019 at 14:15
Sounds like your onco was correct - you are still suppressed? Don't think you are going to be any the wiser for at least 6 months
User
Posted 07 Aug 2019 at 15:02

Ian

Sounds like the Prostap is withdrawing from your body. I'm still on it and my T score was 0.4 at the last count.

Anything up to 0.7 is considered castrate level.

Rgds

John

Edited by member 07 Aug 2019 at 15:59  | Reason: +

User
Posted 07 Aug 2019 at 15:57
Mine recovered and actually from pre treatment rates doubled after six months but I was on triptorelin which is less powerful (?)

Just need to keep monitoring.

User
Posted 07 Aug 2019 at 16:42

My SRT finished in June 2018, around 14 months ago now.  I’ve been on bicalutimide now for almost 18 months.

Two big problems at the moment:

Bowel movements during the night.  It’s bad enough having to get up to pee, but now once or twice a night to poo as well.  I imagine it’s a delayed result of the SRT.

Fatigue - I’m exhausted.  Whilst it would be logical to connect the nightly toilet activities with my tiredness, that’s only a contributory factor.  This tiredness is a  washed-outness.  My arms and legs are sore, I think from muscle wastage.  I’m breathless when I get to the top of the stairs.  As many of you know, I’m a teacher, so on holiday.  I can barely get through a day now so dreading start of term.

Saw my GP yesterday and he’s ordered a lot of different blood tests.  He suspects it’s all related to the SRT and HT, but wants to get a more complete picture.  I see my oncologist on the 28th and that is when I’m due to stop HT.  Just a few weeks to go, but this has not been an easy journey.

 

 

 

User
Posted 07 Aug 2019 at 18:39

I agree about the side effects, fatigue and breathlessness I recognise.

Sincerely hope you feel better after stopping bicalutamide.

I’m also glad I don’t have a new term to face.

Hope all goes well.

Ido4

User
Posted 07 Aug 2019 at 20:32

Ido4,

I do a weekly gym session which is organised by a local PC support group. Many support groups organise regular gym sessions, either free or quite cheap. Actually, meeting other patients for a chat is just as valuable as the exercise itself. You might bump in to your pupils in the gym, unless it's well outside your school's catchment area.

Edited by member 07 Aug 2019 at 20:33  | Reason: Not specified

User
Posted 07 Aug 2019 at 21:09

Thanks Andy, I’ll look into that.

 

Ido4

User
Posted 07 Aug 2019 at 21:14
Ulsterman, I can't find it right now but some research was published in the last couple of weeks regarding whether it is a real thing that teachers get ill during the school holidays. Conclusion was that it is a physical presentation of professional accommodation syndrome - you work like crazy all term, an almost permanent state of fight or flight, and then the body doesn't know what to do with itself after a couple of weeks of the holiday. In most professions, people take only one or two weeks off at a time; teachers are often 'hit by a wall' in week 3 or 4.

It may have been the NEU - I will keep looking.

Also, re bowel movements - if it turns out to be radiation damage, ask for a prescription for Colifoam.

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

User
Posted 09 Oct 2019 at 11:14

Latest PSA <0.1 (taken 3/10/19), great news. Phew! Next test end of the year with oncologist appointment 6/1/20.

My GP has refused any further testosterone tests so I have no idea what level my T is just now. I will speak to oncologist about getting it checked again. 

Best wishes to all.

Ido4

 
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