Salvage RT starts here

User

Posted 15 Jun 2024 at 17:36

Thanks Steve 86,

I really appreciate your daily updates.

I hope the itchiness resolves. Itch can drive you mad - it's no wonder you didn't get much sleep.

Best wishes,

JedSee.

User

Posted 17 Jun 2024 at 15:44

DAY 18
Another one of those days when I arrive 10 minutes early, full and ready to go, only to find 3 people waiting. This time, it was one who was there for their first RT session and that always takes longer so by the time I got into the machine I was in significant discomfort and actually leaked a bit during the procedure - thank goodness I always wear a TENA just in case.
The procedure went as per usual and then I was able to meet the radiologist to discuss the previous week and bring up my skin reactions.
She gave me a full examination including my arms, neck, anus and penis and then called down for a derma specialist who gave me a second examination.
Bottom line is that they don't think this is related to the radiotherapy but an infection that I picked up from the cannula site of the dosimetric (CT) scanner 2 weeks before the RT started and I have been prescribed some cream and strong antihistamines and they will keep an eye on it. I have been taken off the Tamsulosine for the time being until the skin settles down.
So glad that it's not RT related as that would be a bit of a challenge with 15 more sessions to go.
Apart from that, no more side effects so far and not feeling so tired today after the weekend - let's see how I feel on Friday :)

Edited by member 17 Jun 2024 at 15:45 | Reason: Not specified

User

Posted 17 Jun 2024 at 19:47

Best wishes to you, Steve86, you're an inspiration.

JedSee.

User

Posted 18 Jun 2024 at 16:03

DAY 19

I am going to have to get better at timing my full bladder - either that or the treatment is affecting the size of it LOL

I arrived earlier than I expected as my wife came with me and we decided to have lunch in town - so I knew I couldn't hold it all in with 2 people ahead of me, so I trotted off to the little boys room to let a little out. Well that was an adventure as it started as soon as he was pointing in the right direction but could I stop it?? heck no. I was tensing every muscle I could think of and it did eventually stop but then to my horror I realised that in my attempts to stop I had decorated the front of my light brown trousers with pee. Light brown turned dark brown and I'm stuck in the loo trying to dry them with bits of toilet paper.

Eventually I managed to make them slight less conspicuous and pulled my shirt out over my trousers, returned to the waiting room with my hands trying to casually cover the damp areas and sat in the corner with crossed legs!

Even so, after another 5 minutes I was desperate to go again but no way was I going to go through that ordeal again so just had to grin and bear it until it was my turn.

I did explain it to the nurse and she offered me a pad if needed - I was already wearing my faithful TENA #1 so I said no thanks, but I did race to the loo when it was all over - I have never put a TENA to the full test yet but I'm pretty sure I can overfill it with a full bladder!

Anyway, I get a day off tomorrow - yippee. It appears that the machine I use is getting some upgrades so it's out of action until Thursday.

User

Posted 18 Jun 2024 at 17:10

Well done Steve! You’re storming through it! Soon be done. Really appreciate you taking the time to put your experience on here (useful for those who have to go through it in the future….am hoping my Steve doesn’t have to of course!)

User

Posted 18 Jun 2024 at 17:16

Good to hear it’s still going well Steve! Not long to go now 👍

User

Posted 20 Jun 2024 at 13:57

DAY 20

So driving to the hospital this morning I got to the traffic lights and they all went dark - due to the intense thunderstorms we have been having, there was a major powercut. So I arrived at the hospital half expecting the appointment to be cancelled so it was a pleasant surprise to be ushered in after a short 10 minute wait.

I think something might be going on with my bladder as when I started it took at least 500ml of water to get a full bladder 60 minutes later and I could hold it reasonably comfortably. However, the last couple of days, I have had just 300ml just as I leave home and arrive 45 minutes later with it just starting to feel uncomfortable - the days when there has been a 15+ minute delay then it's getting quite painful holding it in (and leaking a bit). I'll discuss during my weekly consultation on Monday.

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. I want it for the rest of the treatments but of course, it's not my choice. :)

The tablets (antihistamine) and cream (corticosteroid) that they have given me for the rashes has worked wonders over the last couple of days and it's all pretty much cleared up so that's really helped.

User

Posted 20 Jun 2024 at 14:56

Sounds good Steve. Forget yesterday's comment - for some reason I thought you were having 20 sessions!

User

Posted 20 Jun 2024 at 16:44

LOL - no, 33 all together - so just a few more :)

User

Posted 20 Jun 2024 at 16:50

Good job Steve, hope you've got a celebration planned after #33!

User

Posted 21 Jun 2024 at 00:28

Originally Posted by: Online Community Member

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

Originally Posted by: Online Community Member

That has gone quickly!

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.

User

Posted 03 Jul 2024 at 15:33

DAY 29

I almost felt like walking the hospital grounds touting for business as as soon as I arrived, 15 minutes early, they sent me straight in for treatment - looked like they had been twiddling their thumbs for a while (was that solitaire I saw on the RT computer screen?? - maybe not LOL)

So the procedure was over in a jiffy and I made my way home - it was a long day however as I was at 7am to have my 2nd hormone therapy injection and my blood test.

Well, 10 minutes ago I received the blood test results and I am OVER THE MOON!

The PSA which had risen to 0.22 at the start of RT is now down to 0.03 - I didn't think it would be affected that quickly but there you go!

Also, after 3 months of HT, my testosterone level is down to 0.5 (the recommended level in PCa patients) is <0.7 so that was brilliant news too.

So as you can tell, today was a HAPPY DAY after all the crap that has gone on for the last couple of years.

User

Posted 04 Jul 2024 at 08:58

Great news Steve and good to see you’re nearing the end of RT😊

User

Posted 04 Jul 2024 at 09:05

Yep, 3 more days to go. I read my original prescription again yesterday and they were meant to do the full bloods (and PSA) before I had my first RT session and the follow up was ONLY for testosterone to show how I was reacting to HT. Anyway it looks like the nurse or the lab misread it and repeated the full blood test and PSA.

During the last consult I was told that I wouldn't have another PSA test for 1 month as 'it takes time for the RT to impact the cancer cells' so I was overjoyed to see that it had already dropped to 0.03 - fingers crossed it carries on that way :)

User

Posted 04 Jul 2024 at 15:37

DAY 30

Only 2 more to go.

Nothing to report apart from an overfull bladder, a little leak into my Tena when on the machine and yesterdays HT injection has brought the hot flushes back again - but nothing a fan or two can't handle. I have to say that I am quite grateful that we haven't had the heat like we did last year. 21C today but this day last year was near 30C. I am sure it would have made them a bit tougher to handle.

Did I mention ONLY 2 MORE TO GO!!!

User

Posted 04 Jul 2024 at 15:45

Steve , I will be interested to see how you feel mentally in the days following completion of the SRT treatment. Do you have a bell to ring ? Hope the SRT is 100 percent successful.

Thanks Chris

User

Posted 04 Jul 2024 at 16:14

Originally Posted by: Online Community Member

Steve , I will be interested to see how you feel mentally in the days following completion of the SRT treatment. Do you have a bell to ring ? Hope the SRT is 100 percent successful.

No bell I'm afraid, in fact compared to some of the fanfares I have seen in the UK (maybe they were childrens wards) there is nothing here. You come and go and that's it - no chocolates from thankful clients.

However, I'm celebrating internally as that PSA of 0.03 was way better than I expected especially as the consultant has said that there would be not much to see for a month after RT ended.

So will have to see but I think I'm in a really good place at the moment, but then again I have always been a glass half full kind of guy.

Edited by member 04 Jul 2024 at 16:15 | Reason: Not specified

User

Posted 04 Jul 2024 at 17:57

If it’s any consolation Steve, up here in Scotland we are too mean to have a bell to ring…in Lothian’s anyway.
I found it quite emotional on my last day, I took everyone in my team a bottle of bubbly and chock to thank them…but I didn’t realise just HOW many there were🤣🤣🤣
I don’t mind though as they were all wonderful and the image of the nurse standing there with the with the bottle for me to pee into when I caught short during one session will remain with me forever. I didn’t wet the floor though😊

User

Posted 05 Jul 2024 at 15:21

DAY 31
Woohoo - the penultimate treatment is over - one more to go on Monday!
Arrived today with my bladder feeling as if it was getting there and as I sat down, the person ahead of me got called through. Now that is typically meaning that 8 minutes later I would be called (yes, I have been timing it lol) and so as I wasn't quite ready bladder-wise I grabbed a quick cup of water from the machine and sat down.
Well 8 minutes passed and no-one appeared and 5 minutes later the nurse who had called the previous guy through came out with her handbag and headed off, presumably for lunch.
By this time I was seriously regretting that last cup of water!!
It was another 10 minutes before I was collected - apparently the guy before me had had some sort of 'episode' - no other details given, hence the delay.
Well I adjusted my Tena in my underpants and lay down on the machine, only for the nurse to come and pull them down further - this was going to be tough not to embarress myself with a large puddle at the end of the treatment.
So when the machine is running, I normally close my eyes and think of what I am doing later - maybe gardening etc. Well this weekend I have to do some work on the car - but unfortunately it involves draining fluids and that's all I could think about - what's the matter with me!!
I was so glad when it was over and must have made a strange sight running back to the changing room in my underwear.
But it's over now and I just have to look forward to the LAST ONE on Monday

Edited by member 05 Jul 2024 at 15:22 | Reason: Not specified

User

Posted 05 Jul 2024 at 21:01

Steve86,

You're doing great. What a guy!

Best wishes,

JedSee.

User

Posted 08 Jul 2024 at 06:28

Good luck with your final zapping session Steve…I’m sure you’ll have a blast🤣🤣🤣

User

Posted 08 Jul 2024 at 10:41

Hope your final session goes as well as the others Steve!

User

Posted 08 Jul 2024 at 14:48

DAY 32 - THE FINAL DAY!!!!!
Well that's it - 32 days of getting zapped and the hardest part was the 45 minute drive there and back for a total of 2,450 kms :)
Seriously it hasn't been hard at all with very minor side effects.
Today of course needed to have some drama and it did as I was called in to see the big cheese Oncologist BEFORE the session and all he really wanted to do was give me an appointment for the end of August to discuss everything - but that 10 minutes was bladder critical and unfortunately I half filled my Tena during the RT :(
Actually, I could feel it leaking during the session and there isn't much you can do apart from try and tense the muscles without moving. Anyway, when it was over I was happy to see no wet patches on the machine or on my underpants - the Tena pad (#1) weighed about half a kilo but it had retained everything and that's the first time I have ever put it to the test like that. So they are worth the 40c each :)
So as far as RT is concerned, it's all over. I have just had my second 3 month HT injection and they will decide in August whether I should continue for the full year - based on my current PSA of 0.03 compared to 0.22 when I started, I'm hoping that they say that the 6 months is enough.
I know it's not a 100% guarantee of a cure and there may be reoccurrence at some point in the future, but we will deal with that if it ever happens - for now I am one happy bunny!!!

Edited by member 08 Jul 2024 at 14:50 | Reason: Not specified

User

Posted 08 Jul 2024 at 16:21

Steve,

So pleased for you and its been great reading your posts everyday.

All the very best to you.

Vern.

User

Posted 08 Jul 2024 at 17:46

Great news Steve, I hope you’re having a wee celebration tonight🍾🍾

User

Posted 08 Jul 2024 at 18:20

Steve, well done, fingers crossed it has done the job.

Thanks Chris

User

Posted 08 Jul 2024 at 20:09

Originally Posted by: Online Community Member

Great news Steve, I hope you’re having a wee celebration tonight🍾🍾

Oh yes, a flaming hot curry and a bowl of pure fibre in the morning :) :)

User

Posted 08 Jul 2024 at 20:54

Congratulations, Steve86! You've done it!

It's been great to read your daily reports of your progress with RT. You seem very stoical, with a positive mental attitude, which probably helps you to cope with difficulties.

I hope the treatment will be completely successful and you won't have to have any further treatments of any kind.

Best wishes,

JedSee.

User

Posted 23 Aug 2024 at 12:06

Just got the latest blood test results and received the magic "<" in the PSA results (undetectable). So happy that we have finally got to this after all the treatments. I know that there is a chance for reoccurrence at some point in the future but for now I am on cloud 9+

It's been a journey ever since my first PSA test back in 2019 and the scans, biopsy and then surgery in 2022, the concern as the PSA gradually rose again and the 32 daily trips for salvage radiotherapy and hormone injections, but today is a day to celebrate and to thank all the consultants, nurses and technicians who have got me to where I am today.

User

Posted 23 Aug 2024 at 12:21

Steve, great news .

Thanks Chris

User

Posted 23 Aug 2024 at 12:53

Great news Steve!

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.

Notification

Join the online community now.