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Salvage RadioTherapy progress - plodding along

User
Posted 26 Feb 2019 at 19:32
That's a great result, Pete! Hope you're in a better place emotionally as a result.

All the best,

Chris
User
Posted 26 Feb 2019 at 20:47
And relax 👍👍
User
Posted 26 Feb 2019 at 20:50
Thanks guys. Am certainly relaxing with a celebratory Cadbury’s Creme Egg and a beer 😂
User
Posted 26 Feb 2019 at 20:54
Forgot to mention. Onco has put me on telephone reviews going forward. He seems very relaxed about it all.
User
Posted 26 Feb 2019 at 22:02
Fantastic - you probably won’t hit your nadir for another year to 18 months
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 26 Feb 2019 at 22:07
I feel like a right wuss now 🥺
User
Posted 01 Mar 2019 at 16:49
Don't be like me. Don't be an idiot. Don't randomly click on an link in a PCA forum post leading to a 20 year old paper discussing outcomes based on recurrence date and doubling time that makes no reference to salvage three days after getting the good news. I'm an idiot for clicking and I think it was a stupid paper to post. Hopefully common sense will kick in after a good nights sleep. I'm giving such sstuff a wide berth from now on.
User
Posted 01 Mar 2019 at 16:51

Good news and enjoyed by all Members on this extremely worthwhle site. Well done.

User
Posted 01 Mar 2019 at 19:41
On a side note I remembered to check my prior T levels. Mid 2017 it was 9 nmol/l and is now 14. So I have had a positive reaction to treatment in a more testosterone rich environment. Intuitively that sounds good.

I reckon my lifestyle changes were what made the improvement to my T.
User
Posted 19 Mar 2019 at 14:11
I’ve seen variation in successful initial post SRT results. Would my 0.07 be considered typical?
User
Posted 19 Mar 2019 at 23:04

Not sure if its typical but 0.07 and remaining low would seem good?


 

Ido4

User
Posted 20 Mar 2019 at 00:53
There isn't a typical - but below 0.1 is always good and you could expect it to drop lower by this time next year.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 20 Mar 2019 at 10:42
Thanks

I asked because I had seen a few cases where the initial drop was like 0.03 or below so wondered if that had a bearing on risk.

PP
User
Posted 20 Mar 2019 at 12:54
Mine took 3.5 years to hit its lowest point Pete

Bri
User
Posted 23 Mar 2019 at 11:39
Well just got to cross fingers and plod on
User
Posted 26 Mar 2019 at 13:26

I read recently that a post SRT value of < 0.05 is a better indicator of long term success particularly in problematic cases like mine.


Would that be counted immediately after SRT, when T levels are back (where I am nor) or at nadir?


Cheers


PP

User
Posted 26 Mar 2019 at 17:13
It is hard to say without knowing the parameters of that particular research ... was it with men having SRT with or without HT, for example, and how did they define post-SRT point? You can Google and search and read to your heart's content but without the context, it is easy to misinterpret.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 26 Mar 2019 at 18:07
Hi

I was looking for something on post SRT nadir thresholds and it popped up so I scan read it. Mistake #1. It was just another "grab a retrospective cohort and analyse progression and outcomes based on pathology" and referred to post SRT PSA of 0.05 but not very clearly. The actual conclusion totally ignored that fact and only referred to the fact that SVI (and NOT VI) was the main concern for poor outcomes. To be fair I have only seen about half a dozen papers across the interweb that dwell on recurrence and DT.

I could not find the report again but on searching far more came up saying post SRT <0.1 (mine was 0.07) was correlated with better outcomes. This was in papers suggesting that SRT should start <0.2.

I guess there is good news in there and futher proof that the thing is a minefield.

I need
User
Posted 26 Mar 2019 at 19:58
You need .... to try to wean yourself off these searches, they traumatise you and are possibly preventing you from moving forward and learning how to live your best life.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 26 Mar 2019 at 20:06
Yea you are right.

I’m the poster boy for how now to deal with this bloody disease.

Thanks for the wake up call.

P
User
Posted 22 May 2019 at 08:04
Hi all

In the last two months I have lost a dear friend to cancer, started a new IT management job which often involves The Alamo moments and spent a lot of time medidating on life and death from a Taoist perspective (my thing rather than organised religion). These things have filled my life, the first two somewhat stressfully, I admit. I have barely looked at or posted on any forums and certainly not delved into the rabbit hole of medical research.

I noticed a month ago I was not waking up thinking "OH SH*T, I have cancer" because my attention was focussed on my life. I only sporadically think about it now. It kind of feels good but I am aware I am inbetween tests and have a long journey.

I am hoping that this attitude (apart from overworking myself which I need to stop right now) is a healthy thing as opposed to delusion or denial. I am unsure of how I will cope in the run up to and the results of my next test.

Your thoughts would be appreciated on moving on with a healthy mindset.

PP
User
Posted 22 May 2019 at 08:37

So sorry you lost a dear friend to cancer.


It sounds like you are moving in a much more positive direction on a number of fronts, other than the overworking of course!


Moving on with a healthy mindset is difficult. I am still very much up and down with that.


I hope you stay in the zone!


 

Ido4

User
Posted 22 May 2019 at 08:42
Biggest problem with our illness is the fact that there is a test for it. This causes us to focus on numbers that may or may not have any bearing on our ultimate demise.

The fact that you are coping better "in between consultations" is because your next appt is to far away to be dominating your conscience and your last one is far enough behind to have been fully processed.

Ultimately I think peace comes with acceptance and realising you have to work with what you have.
User
Posted 22 May 2019 at 19:41
Thanks Ian. Most of my stress wiring is taken up with my new job. It is odd how you go from "I have diced with death, nothing else is an issue" to "argh! my customer is screaming and we are going to be late delivering!" I need to revisit the thought processes of acceptance and priority I worked on whilst waiting for my first result.

Francij. Yes, you are right. As I said above, it shows how the mind can forget. I know it is still there tucked away, but it is not bouncing around screaming like a chimp at the moment. Good days are where I look at the sunny sky and think "it is good to be alive" and not think about anything else.
User
Posted 23 Jun 2019 at 09:19
So my last test was end of Feb and I was told test and telephone consult in 4 months.

Not had a peep from them and it is due.

I wonder if I should ring up and arrange it myself?

It has gone very fast....
User
Posted 23 Jun 2019 at 10:16
And I found the letter in a pile of papers.

Shows I wanted to ignore it unconsciously 😰
User
Posted 23 Jun 2019 at 11:26
Just got to get a blood draw for Wednesday now 😱
User
Posted 23 Jun 2019 at 14:12

Hope result is a good one when you get it. I am scheduled for PSA and other bloods next Friday, oncologist on 8/7. 

Ido4

User
Posted 23 Jun 2019 at 15:14
Cheers

You are out of HT now?

Cross fingers for you too!
User
Posted 24 Jun 2019 at 08:31

Yes, had last PROSTAP 3 injection 3/1/19.


All the best,


 

Ido4

User
Posted 24 Jun 2019 at 09:07
Squeaky bum time for both of us then!
User
Posted 24 Jun 2019 at 15:47

Very much. The waiting is horrendous.

Ido4

User
Posted 24 Jun 2019 at 16:41
I found round #1 pretty hard.

This time with a (stressful) new job, a holiday and other things I literally wiped it from my mind until too late :)

Funny thing is that the stupid new job made me lose sight of the fact that work is the least important thing in life compared to happiness. I reflected on holiday that the stress and kindergarten politics in my new job are not for me so I may well jack it in at the end of the probation period and say "It's not me, its you" :) and go back contracting. At least then I can walk away from the idiocy and only have to work part of the year.
User
Posted 03 Jul 2019 at 13:24
Just tried to send you a PM, ProstatePete.
Your inbox is full so can’t send.

Ido4

User
Posted 03 Jul 2019 at 13:47
PM sent after a spring clean :)

Results today - 0.05
User
Posted 06 Jul 2019 at 20:44

Pete


Wow, that's a great result.


Thanks Chris


 

User
Posted 06 Jul 2019 at 20:59
Thanks Chris

It was down from 0.07 (Feb) to 0.05 (July) so now about 9 months after RT finished and just under a year since the last HT jab with my T levels now twice what they were before all this started.

I cannot describe the emotions I had that afternoon after being told this.

The two days before the call I felt like I image the lads felt lining up in the trenches waiting for the whistle, but I just pressed on and got on with things and rode it out.

PP
User
Posted 06 Jul 2019 at 21:38

Well done, and hoping it continues in that direction.

User
Posted 06 Jul 2019 at 23:06

Great result. It’s never easy building up to the moment of truth. 


Hope PSA continues to stay low.

Ido4

User
Posted 17 Jul 2019 at 15:34
I do have one question. The onco put me on immediate 6 month check rota after this second test but being a wuss I asked for four which the lovely onco nurse happily obliged to. Is it normal to go onto six months so quick with good results?
User
Posted 18 Jul 2019 at 11:22

I’m not sure what the answer to that question is. I agree with you having more frequent tests for now. My PSA went from undetectable to 0.3 in three months so I’m also a wuss about extending time between tests.

Ido4

User
Posted 11 Aug 2019 at 16:09
I've just stumbled on this thread and read through a good chunk of it. I had RP in April 2015. Slightly elevated PSA result in July last year and up to 0.2 this January. I was a bit surpriosed how quickly I went on to salvage RT. I delayed taking daily Bicalutamide and deferred treatment until May as I was well into training for a fast time at the London Marathon. Unfortunately I had a problem with sciatica and had to stop running in March. Decided to do the marathon anyway and plodded to the finish in 3'45 and £1400 raiused for PCUK.
Anyway, completed RT on 25th June. I survived that part surprisingly well and managed to cycle 12 miles each way to hospital or drive and walk the last 2 miles every day.
I managed to do the 75 miles Great Western Ride 3 weeks after completion of the RT with no real problems. But since then I have been feeling increasingly weak and I am finding it increasingly hard to do any exercise.
I wonder if this is due to the effects of the hormone therapy as I seem to be suffering more and more of the nasty side effects of Bicalutamide and Tamoxifen. I'm 31/2 months into the HT and have another 21/2 months to go. Today was another low point. Before treament I was running 10-15 miles at sub 7 min/mile but today I struggled through 4 miles at close to 11 min/mie.

I was slightly disappointed that my post-treatment PSA cam back as 0.1 - I was lead to beleive that it would be back to undetectible.

So, any comments on how long it will be before I can start to rebuild my fitness? And should I be concened about my PSA level?

Hoping to see my oncologist this week.
User
Posted 11 Aug 2019 at 16:35

Did they do any scans before salvage radiotherapy? If PSA is 0.1 and not <0.1 I would suggest repeat tests to confirm. Very stressful time for you. 


Unfortunately HT does case fatigue and a reduction in fitness but it will benefit you greatly to keep exercising as you probably know. There are plenty men here who found their times and distances were poorer while on HT.


 

Ido4

User
Posted 11 Aug 2019 at 21:54
It could be any one of a number of reasons. As Ian suggests, you need more tests to get a trend. You may also need to check dosage rates and timing as if these are off that can have an effect. Keep going with the fitness and keep as positive as you can.

PP
User
Posted 11 Aug 2019 at 22:43
The RT can cause PSA to rise temporarily; you won’t see your lowest reading (the nadir) until about 18 months after the treatment finished. Some oncos would have discouraged you from even having a PSA test at this point; it is much too soon to be indicative of anything.

Bicalutimide side effects hit some men harder than others, particularly the really fit guys. John couldn’t stand it and gave up early ... not to be recommended but so far he seems to have got away with it. At least bicalutimide is out of your system quite quickly; you will regain your fitness eventually.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 11 Aug 2019 at 23:31

Was just writing a reply, but Lyn said most of it so i deleted that part!


The RT doesn't kill all the cancer cells immediately, but it should have left the DNA in the remaining cancer cells sufficiently faulty that they cannot multiply anymore. Some will still live for a while before they die. This is sometimes referred to as the cooking time and that is up to 18 months for prostate cells. Your PSA nadir is when they finally die.

User
Posted 13 Aug 2019 at 08:50
Thanks for the re-assuring replies guys. Off to the oncologist this afternoon. :-)
User
Posted 13 Aug 2019 at 17:58
Back from the Oncologist. He suggested coming off the HT as it appears to be causing a few problems and the potential benefits are uncertain. I've now got to wait 6 months to get another PSA test and see whats happening then. I should be pleased but I'm currently feeling a bit flat. I'm sure I'll feel better later! Off to test myself on a 10 mile TT. :-)
User
Posted 13 Aug 2019 at 17:59
Back from the Oncologist. He suggested coming off the HT as it appears to be causing a few problems and the potential benefits are uncertain. I've now got to wait 6 months to get another PSA test and see whats happening then. I should be pleased but I'm currently feeling a bit flat. I'm sure I'll feel better later! Off to test myself on a 10 mile TT. :-)
User
Posted 13 Aug 2019 at 21:52
Hi Pete

Regarding your deferall of HT - did you discuss the risks and consequences with your consultants as part of that decision?
 
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