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Salvage RT starts here

User
Posted 21 Jun 2024 at 00:28

Originally Posted by: Online Community Member
Apart from that, my normal machine was being 'updated' whatever that means and so I was sent to a different machine. This looked brand new and was so quiet compared to the old one - the Linac sounded the same but the scanner was almost silent.

Steve,

They seem to have to service them on a regular basis! Hugely complex machines I guess. I had the new LINAC/old LINAC thing happening too with exactly the same symptoms where the older one seems just that little bit less light on its feet. If you get a chance, see if they'll let you have a look in the control room, where they work all the buttons, levers and screens. It's incredible and gives you a whole new vista on what they're actually doing behind the scene.

You're past the hump now so I hope it feels like you're nearly there. It's tougher than it seems in some odd ways, so congratulations for sticking at it. I have to confess I missed a day late in my treatment when it all got too much but the staff were very understanding and I was back on track next day.

Jules

 

Edited by member 21 Jun 2024 at 00:49  | Reason: Not specified

User
Posted 21 Jun 2024 at 09:52

Originally Posted by: Online Community Member

... see if they'll let you have a look in the control room, where they work all the buttons, levers and screens. It's incredible and gives you a whole new vista on what they're actually doing behind the scene.

I'll try but they are normally so busy (they told me they have 50+ customers a day on each machine - 5 of them now + cyberknife and dosimetric scanner) so probably not going to be possible, however you can work out the process.

You lie down on the bed of the machine after they position the supports against markings on the bed and read off from a screen that has your photo and settings.
They position the parts of the machine and make sure your tattoos are in the approximate position and then leave the room.
The machine starts up and rotates around you doing the scan and after about a minute it stops. Silence ensues for about a minute and then the machine bed clicks and clacks as it aligns your body with the pre-programmed plan for the radiation.
Then the Linac kicks in making whistling and clicking noises (a bit like tuning into Radio Luxembourg on SW) for a minute and the head moves around your body so it delivers the radiation in 3D.
You then get about 30 seconds until the Linac runs again giving the second dose.
The techs then return, lower the machine bed and help you off - you say thanks and 'see you tomorrow' and head back to recover your trousers, shoes and dignity.

Pretty easy actually :)

User
Posted 21 Jun 2024 at 10:12

Steve, I asked if my wife could come into the treatment room and see me being set up, they said yes and even let her take a couple of photos. When they finished setting me up they took my wife into the control room to watch what happens. The carrier bag full of biscuits, cakes and snacks may have helped.

When it came to the last day I rang the bell and everyone in the waiting area stood up and clapped,when I say everyone I was the last appointment and there was only the receptionist and my wife there. 😄.

Thanks Chris.

User
Posted 21 Jun 2024 at 10:37

Originally Posted by: Online Community Member
I'll try but they are normally so busy

Yes, I think I got lucky one day when I was the last customer.

They do run pretty much non-stop for days on end, so it's no surprise that they get a little tired.

Jules

User
Posted 21 Jun 2024 at 12:42
Chris

No bells here unfortunately and no-one seems to bring choccies so I might start a new trend as I intend getting some boxes of English chocolates for them on the last day.

I did ask them if I could take a photo which I had done previosuly on the CT scanner but they said no, but they did point me to the photo of the actual machine on their website so I have a copy.

Jules

Yes, they are certainly non-stop throughout the day - but I did notice that they rotate a lot - over the 20 days I have only had the same people 3 or 4 times.

User
Posted 21 Jun 2024 at 12:45
DAY 21

This is going to be quick - I arrived 10 minutes early, they took me straight in (bladder was full), performed the RT using their 'updated' machine (it looked the same to me) and I wished them a good weekend. The End.

Actually one thing I have noticed is that the tiredness/exhaustion seems to have abated as feeling much chippier (but don't tell the wife as I am still milking it LOL)

12 more to go!!

User
Posted 24 Jun 2024 at 14:19
DAY 22

Oh dear, another 'walk of shame' today as despite drinking 500ml an hour beforehand, my bladder did not fill so they interrupted the scan to tell me. Back to the waiting room, 5 cups of water and sit and wait. 30 minutes later I was called back and this time it was OK so I received my 2 Gy.

I hate doing this as it throws all their timings out but the nurse explained that with the hot weather (27c today) that unless you kept up with your fluids, then the water would first be used by the body to rehydrate and then the excess would go to the bladder.

I realised that I had been in the garden yesterday as well as walking the dog in 25c and I hadn't been drinking much water - so it was definitely all mu fault.

I had my weekly consult and they were very pleased that my rashes had all cleared up - almost certainly down to a reaction to the cannula, and I am now back on the Tamsulosine tablets.

Nothing else to report from the side effects - the tiredness has pretty much gone and I am sleeping much better.

The good news is that I thought that I was getting 33 sessions but apparently it's only 32 so only 10 more to go :) :)

User
Posted 25 Jun 2024 at 15:50
DAY 23

I got a taste of my own medicine today as the guy before me did the walk of shame with an empty bladder and so that delayed me by about 15 minutes. Unfortunately I had made sure I was full on arrival so I ended up having to relieve some of the pressure in the loo as it just got too painful. I have found that my bladder control when full isn't quite what it was when I started RT so I do leak a dribble here and there when bursting. Yesterday after drinking all that water, I ended up going to the loo with a full bladder 7 times afterwards so I am thinking maybe my bladder capacity may be reduced - or maybe not?? - I did drink a lot!

Anyway, the treatment was as per usual although the Linac did sound a bit different to me today but when I mentioned it to the tech they assured me that the program was the same one they always use. Just me I guess :)

User
Posted 25 Jun 2024 at 19:04

Well done, Steve86, you're doing well, and "only" ten more to go ?!

Best wishes,

JedSee.

User
Posted 26 Jun 2024 at 14:47
DAY 24

That was probably the quickest one yet, arrived, sat down, could feel the need to go and the nurse walked out and invited me down for treatment. 5 minutes later and I'm done and heading back home.

My only concern (again) was my constipation and although I emptied a bit in the morning, I felt that it wasn't completely empty - however the nurses seem less concerned about that than ensuring you have a full bladder. This is different from the initial scan where they were adamant that the rectum was completely empty along with a full bladder. Anyway, I have given up worrying about it.

No side effects so far and counting the days :)

The only negative about the whole experience is the 45 minute drive there and the 45 minute drive back every day - all for 3 minutes in the machine :) - small price to pay LOL

User
Posted 27 Jun 2024 at 13:01
DAY 25

Nope, this was even quicker :)

As I arrived, someone who I had met on the journey came walking out looking glum - yep, another 'walk of shame' so he was under instructions to drink 4 cups of water and wait. That freed up the machine so I walked straight in. 5 minutes later I am out and on my way home :)

Only 1 more week to go - I wonder how long before they do the next PSA test?

User
Posted 27 Jun 2024 at 20:26

That's brilliant, Steve86,

You're doing really well.

Best wishes,

JedSee.

User
Posted 27 Jun 2024 at 21:04

Steve, I had my first PSA test three months after the last SRT session. The one after six months was half the three month test.

I didn't have HT which would affect the results.

Keep going, thanks Chris 

User
Posted 27 Jun 2024 at 21:14
Thanks JedSee!

Cheers Chris

I am on the HT injections, one every 3 months, and the onco said for 6 months but his prescription says 12 months so I'll discuss it during Mondays consult - I don't mind staying on it for the full 12 months if it improves the chances of getting rid of more cancer cells but we will see.

3 months before the next PSA sounds about right - I'm guessing that we won't see any positive impact of the RT immediately.

User
Posted 28 Jun 2024 at 14:15
DAY 26

Fridays seem to be quiet days so yet again in and out in quick time. I also seem to be timing my bladder filling quite well. Feeling a little tired today so happy to be able to chill out over the weekend and next week is my last week :) :)

No side effects to report apart from what I get from the HT and even they aren't that bad really.

User
Posted 30 Jun 2024 at 00:31
That has gone quickly!
User
Posted 30 Jun 2024 at 11:07

Good to hear it’s still going well Steve. One week to go mate 👍

User
Posted 30 Jun 2024 at 12:06

Yes, it's flown by and compared to the RARP was very much free of any noticeable side effects apart from the HT hot flushes/lack of libido but I can handle those.
Just fingers crossed that it has had a really nasty impact on those cancer cells :)

Time will tell!

User
Posted 01 Jul 2024 at 14:14
DAY 27

So the start of my last week which made me feel very positive and apart from a short delay, the treatment was the same as normal. Being a Monday I had my consult and we discussed the next steps.

So I need to get a blood test this week for my testosterone and at the same time get my next 3 monthly hormone therapy injection - we will discuss this at my final consult next Monday that corresponds with my last RT treatment.

Then, I will have a meeting with the big cheese Consultant a month later with a PSA test done a couple of days beforehand. That will be a discussion on next steps, frequency of PSA testing and whether I stop the HT after the 6 months are up or continue for the full year.

It all feels that we are getting to the end of this stage and everything is crossed that that will be the end of it, at least for the foreseeable :)

User
Posted 02 Jul 2024 at 20:24

DAY 28
Counting down the days to the end - last treatment is Monday!!
Had to arrange todays session to 17:00 and then almost forgot about it LOL which threw things out a bit but managed to empty my bowels beforehand and was rapidly drinking water on the way there. Fortunately they were running 15 minutes late so the bladder was full enough for the treatment.
Have to go to see the nurse tomorrow for my 3 monthly HT injection and a blood test which will include testosterone levels.
So hot flushes for the rest of the week hahaha
Seriously, the first one wasn't that bad so let's see how this one goes.
Back to normal times tomorrow.

 
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