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Salvage radiotherapy

User
Posted 26 Apr 2018 at 12:09
Any thoughts on my ever changing his mind oncologist now proposing to stop my HT after two years total and not two years after the end of radiotherapy?

Thanks, Ian

Ido4

User
Posted 26 Apr 2018 at 18:46

How many months' difference would that be? I think your onco is perhaps quite impatient by nature?

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

User
Posted 26 Apr 2018 at 20:36
4 months less time on HT.

Ido4

User
Posted 26 Apr 2018 at 21:10

Well some oncos give SRT without any HT at all, while traditionally it was given with 6 months HT. John should have had 12 months but stopped after 6 because he hated how it made him feel. You are in a slightly different situation where SRT was given despite the onco believing you had micromets - on the one hand, the extra 4 months might be useful but on the other, the onco may be keen to see whether and how quickly your PSA rises. If it does rise, you will be on HT long term so perhaps giving your body an early break is no bad thing?

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

User
Posted 26 Apr 2018 at 21:47
Thanks Lyn, I don’t like the side effects of the HT either. It’s true that I and my onco will only know the answer to the question once I stop the HT.

I just wondered if there was any advantage to staying on the HT a bit longer. He did say two years post SRT initially.

The plan before SRT was agreed to was to be on intermittent HT.

if there isn’t a medical advantage to stay on it longer then a break from it would be good.

I’m just really unsure and nervous about making sure I and the medics do the best we can to keep things at bay.

Ido4

User
Posted 08 Aug 2018 at 18:59

A quick update, PSA measured 1/8/18 still undetectable (<0.1).

I am waiting for a sigmoidoscopy as an MRI showed some ”thickening “ of tissue in the rectum, probably caused by radiation damage but oncologist wants to check.

I am due my last PROSTAP 3 injection (for now) on 11th October with PSA tested 1/11/18 and 1/2/19.

Still struggling with hot flushes, fatigue but golfing and walking for exercise. 

I see oncologist again on 15/10/18.

Best wishes to all.

Ian

Ido4

User
Posted 08 Aug 2018 at 19:06
Scores on the doors good. Long may it continue!

If life gives you lemons , then make lemonade

User
Posted 08 Aug 2018 at 19:51
Fantastic news Ido x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Aug 2018 at 21:33

Well done, Ian. It’s, hopefully, a long slog for us all, but latest figures look very encouraging. After finishing SRT last December, my bowel movements recently have become quite alarming at times and I think it must be a side effect of the radiotherapy. Have upped my fibre intake and thankfully it’s settled down. Don’t see my Oncologist until late October, but at one stage I thought I might have to book an earlier appointment with her. Good luck with your next blood test in November, Ian.

User
Posted 08 Aug 2018 at 21:53

Hi Ian

Good news concerning PSA and long may it continue.

I had a hernia op last year and the surgeon said that it took a bit longer due to thickening  of some of the layers as a result of RT so it can have an effect.

Hope they sort things for you.

Kind regards 

Kevan 

User
Posted 08 Aug 2018 at 22:20

Fantastic!!

Long may this continue!!

P

User
Posted 09 Aug 2018 at 09:09
Great news Ian, I am very happy for you!

(by the way I had my consultation last night I am going back to your recommendation of "Fybogel" after 3 months of problems :\).

Richard

User
Posted 02 Nov 2018 at 10:25
So I've had the sigmoidoscopy 1/9/18. Evidence of radiation proctitis and a polyp removed for checking. Good news is the polyp has been looked at and is benign.

I saw my oncologist 15/10/18 and he is quite happy with the way things are for now. I have my last PROSTAP 3 injection on 3/1/19 and in my oncologists words "we wait and see what happens. If your PSA rises again then we will put you back on PROSTAP".

I had my bloods tested yesterday including PSA. I have full blood tests regularly as I am on arthritis medication so red cells. white cells, electrolytes, liver and kidney function.

I got a call from my GP at 4 p.m. to say the lab had phoned. My potassium reading was high (6.3) so I had to head off 15 miles to the Western General Hospital in Edinburgh for ECG, blood pressure. temperature and bloods to be rechecked.

After 2 and a half hours of waiting (not too bad overall) the potassium came back as normal (4.2) so got home at 9 last night, phew!

While I was there I asked the doctor if the labs had reported my PSA value. She went to check and it is still <0.1, hip hip!

Why is it that while I was driving home I had an urge to ask for a printout so I can see <0.1? Bloody disease and my control freakery!

Best wishes,

Ian

Ido4

User
Posted 02 Nov 2018 at 15:22
Congratulations! (I won't segue into singing "and Jubilations!" as you don't want ear damage added to the list :)

Time to focus on living well and having fun!

User
Posted 02 Nov 2018 at 16:38

In the main it was extremely good viewing your latest Post, Ian and long may the excellent readings continue. Agree very much with your last sentence though ... this awful illness makes one very sceptical even when we receive good results. Memo to self ... I must, MUST remain positive! David.

User
Posted 09 Jan 2019 at 09:00

A wee update.
I had my final PROSTAP 3 injection Thursday 3/1/18.
Squeaky bum time waiting to see if PSA levels remain undetectable once the HT leaves my system.
This is scary but I suppose we have to find out whether the oncologist is right and I have metastasis or not. I really hope SRT has worked.
I am looking forward to not having PROSTAP in my system after 2 years three months on it.

I am also finding my continence, which had fully recovered after LRP, is not so good. I am not leaking massive volumes but it is now affecting my everyday life.
Perhaps the radiotherapy has damaged the remaining sphincter?
I have been offered an artificial sphincter but the surgeon wants me to try pelvic floor exercises along with solifenacin to see if that helps first.

Best wishes to all, Ian.

 

 

 

 

 

 

 

 

 

 

 

 

 

Ido4

User
Posted 09 Jan 2019 at 12:04
Good news about final injection. Hopefully the effects will wear off quite quickly but could be up to two years I hear. Bad news about continence. It’s horrible ain’t it. I hope things improve

If life gives you lemons , then make lemonade

User
Posted 09 Jan 2019 at 16:52
Good luck Ian

I’ll be crossing everything I can for you.

Keep fighting!

P

User
Posted 11 Jan 2019 at 17:08

Ian

Following numerous dilatations I did regain my continence several times. My continence suffered post RT, hard to conclusively judge, but I think my continence did improve, urgency is a issue but at least I get a short warning. I have tried most of the solifenacin type medications they took a while to kick in, then seemed to lose their effectiveness, now on Regurin.

Best wishes.

Thanks Chris

User
Posted 21 Jan 2019 at 22:07

Latest PSA from 17/1/19 <0.1,  fantastic. The next few months as the prostap leaves my system will be stressful. Next PSA measurement in 3 months.

My bloods generally have been problematic the last two months. 'False" high potassium results between 5.5 and 6.3. White cells 3.4, neutrophil 1.86,  Lymphocytes 1.09, calcium 2.65. All taken 17/1/19. Red cell count was 4.4 and haematocrit 0.391 on Christmas Eve.

The above are all out of normal range.

 As a check my TSH and free T4 were measured coming in at 1.3 and 12 respectively so normal range for my thyroid.

I am suffering from indigestion every day and night with periods where symptons disappear.

Have made appointment with GP 31/1 (earliest i could get) to discuss.

Sorry its a bit of a ramble, any thoughts?

 

Ido4

User
Posted 21 Jan 2019 at 22:49
Great news re PSA, no idea re rest of it!
User
Posted 22 Jan 2019 at 07:18

Whoop! Whoop! Brilliant news. Keep it up 👍

I’m due for my first post RT check in three weeks and am in a bit of a funk. This will help lift me out of it.

User
Posted 22 Jan 2019 at 07:30
Good news Ian and good luck in three months with the next PSA.

Hopefully the rest of the bloods can be sorted too

Cheers

Bill

User
Posted 22 Jan 2019 at 17:45

I

Good news on the PSA can't help with the others.

Thanks Chris

User
Posted 22 Jan 2019 at 18:08
At least the psa is gone hopefully for a long time. Are you on Cialis , can’t remember. Causes bad gastric probs. Best wishes to you.

If life gives you lemons , then make lemonade

User
Posted 22 Jan 2019 at 19:15

Thanks Chris, I am on twice weekly Cialis and have been taking Naproxen for arthritis.

I’ve made an appointment with a GP so hopefully get it sorted out.

I've had a GP on the phone tonight. I've to get monthly blood tests for the foreseeable and watch out for infection because of my low immune system results. Calcium to be rechecked too.

When are your scans due to be done? Hope you are doing well. 

Take care.

Ian

 

 

Ido4

User
Posted 22 Jan 2019 at 19:52
When I had my surgery I was isolated 3 times due to low white cells and neutrophiles. They put it down to my bipolar meds at the time which I now survive without. After starting Cialis I was put on pantoprazole to stop severe acid probs. I’ve had horrendous leg pains for months which may be down to Cialis but I’m so shallow I don’t want to stop as I’m enjoying a love-life so much again. Saw GP today and has given me blood tests for Diabetes , Renal , arthritis and B12. I manned-up and broke down telling him how much I was drinking which could also be part of the problem.

So blood tests tomorrow, full bone scan Friday ( 4 hrs) , CT whole body Monday, anniversay night away Tuesday ( though not sure I can relax ) , and all results 6th Feb. And trying to hold down my job as well. At breaking point if I’m honest .......

Take care and best of luck with it all. Hope all bloods settle for you.

If life gives you lemons , then make lemonade

User
Posted 22 Jan 2019 at 22:12

It’s probably not a bad thing that you broke down and opened up. Sometimes the bubble needs to be burst.

I really respect your attitude to life and Cialis etc. It did make me giggle when you talked about being shallow and bashing on despite the gut problems.

I hope you can relax and enjoy your anniversary away on Tuesday.

Ian

 

Ido4

User
Posted 03 Jul 2019 at 17:57

Latest PSA <0.1 (taken 28/6/19), great news. I see the oncologist on Monday.

Hopefully my oncologist won’t rain on my parade.....

Had my last PROSTAP 3 jab 3/1/19.

 

Ido4

User
Posted 03 Jul 2019 at 18:03
Great result. Keep at it

Bri

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.

If life gives you lemons , then make lemonade

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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