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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.

 
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