Salvage RT starts here

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

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!!

Hmm, so the treatment went the same as the previous two visits but can't help but feel that I might be starting to notice something. I have felt slightly nauseous this afternoon and I went to do a couple of small jobs on the car, nothing very strenuous, but feel completely wiped out. I'll give it a good nights sleep and see how I feel in the morning, also I haven't eaten much today so a good meal this evening might put me back on track.

I have a consult with the oncologist on Monday before the treatment so will see what he says and no treatment over the weekend so a chance to rest up a bit.

What a strange journey we are on :)

DAY 10
This constipation is getting me down a bit as I arrived with what I thought was again, a non-empty rectum but it seems that as long as there is no gas then it's not really a problem. The diet without fibre is the cause of the problem so will have to see how I progress.
The process was the same as usual - it's funny how you get to know exactly what sounds to expect. The procedure starts with being called through to a changing room - remove trousers and shoes.
Then called through to the machine room and lie on the machine bed with your head located in rest, legs resting over a hump and feet in stirrups. Pull your shirt up to expose your stomach and they pull your pants down slightly to expose the tattoos.
They then leave you. At this point I close my eyes and just relax.
The machine starts by rotating around you making whirring noises - this is the scanner. After a couple of minutes it stops and all goes quiet whilst the techs examine you body position and the bed then clicks and clacks a little shifting you under the beams.
Then the Linac kicks in and starts making whining sounds and this lasts for about a minute. Then a rest and then it kicks in again for another minute. As the dose is 2Gy I like to imagine that each session of the Linac is delivering 1Gy - but no idea if that's right.
As soon as it's finished, the tech comes back in, tells you it was all 'parfait' and you bid farewell until tomorrow and they get ready for the next candidate.
Start to finish is less than 10 minutes.
Let's do it all again tomorrow :)
Oh, almost forgot, no side effects to report.

Edited by member 05 Jun 2024 at 14:21  | Reason: can't spel

Well, apart from the previous candidate having some sort of "accident" that put the changing room out of action and delayed proceedings (resulting in the agony of an overfull bladder), everything went well.

I got bored so decided to count the durations that the Linac fired - the first one was 58 seconds and the second one was 70 seconds.

Now I get a weekend off so it's (mild) curry night tonight :)

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

I have my next PSA test planned for 1 year after the end of SRT and the threshold for any further intervention has been set at 2. Further RT is possible depending on what develops but the oncologist suggested that most people don't see anything for 10 years although it could be possible 2-4 years depending on how it grew and was treated.

I'll certainly be enjoying my holiday that starts on Sunday :)

So the way things are going this could be quite a boring thread. Off I went for the second treatment - and - it was the same as the first one LOL. Straight in, 10 minutes in the machine and a 'goodbye, see you tomorrow'. I did learn that they have 4 machines at the hospital and get through 50 patients a day on each (it is a regional cancer centre). They do have it down to a well run procedure I have to say.

So no symptoms so far, I have worked out just how much to drink beforehand so I arrive with a completely full bladder and the Movecol is moving everything else mid morning.

I did make a note in my head of all the aches, pains and twinges that I felt beforehand as your mind does play tricks when looking for side effects - but nothing new to report.

No treatment over the weekend so might have a mild curry on Friday night as a treat :)

Steve 

Your diary is useful as I start my salvage radiotherapy on 18th June - 20 sessions. It will be interesting to read what side effects you experience so that I can brace myself! I know we’re all different but it’s useful to know what may happen.

I wish you well with the remainder of your treatment.

Hi Steve

Great to hear and I agree how routine is so important. Like you I had my 6th fraction this morning and so far no issues.

My routine from day 1 has worked and I'm sticking to it

Morning 8am glass of pure orange, slice of white toast and large fresh coffee.

Between 8.30am and 9.30am bowels move so happy days

Between 9am and 10am drink 600ml water

Travel to hospital to arrive 1 hour before zap time. Empty bladder which is normally bursting from 40 min drive down. Take suppository

15 mins after this, clear out bowel....normally nothing comes out as I've already moved. Empty bladder

Drive 600ml water in 5 mins and then wait 40 mins to be called. Nladder feels full again

Into room and onto table. 3 mins getting me lined up on coordinates on table. Nurses leave me 

3 mins taking scans in machine and checking

Hear the clunk and the sign illuminating to say keel out radiation in progress. 1 minute for zapping and its done

Swing round gingerly and off table so I don't burst with full bladder and not wearing a pad because I think I'm a big boy now.

Casually walk out hoping nobody stops me for a chat as i have at least 350ml in my bladder

Take a pee and go Aaahh that's great

Take a few roses chocolates out of basket at reception and thank the girls

Home and ready for the next day 😌 🙌 

Good luck,

Phil

Nothing really to report - I arrived early but they weren't busy so took me straight in. Bladder was full but not bursting and I had had a little constipation this morning but did manage to move a bit - anyway they said everything was fine so I got meself another 2 Gy. I have no idea of what a Gy actually is, but I've now got 16 of them :)

Arrived early again but felt like my rectum might not be completely empty as I had a little constipation over the weekend and took my 08:30 Movicol and had two movements fairly quickly. Explained it to the tech (who happened to speak perfect English!) but he didn't think it would be a problem and indeed it wasn't.

After the treatment I had my obligatory interview with what I thought was an intern, but it turned out she had 7 years of study under her belt - my bad!

Anyway, everything was progressing well with no significant issues however she felt it prudent to start me on Tamsulosine, one each evening. She explained that it was more preventative to stop any small issues becoming bigger ones later on. It's what they call an alpha blocker and it fights against the contraction of the urinary tract which apparently is one of the possible side effects of the RT.

I also asked her why my testicles were shrinking (not something that you normally discuss with a 20 something year old lady) and she confirmed that it was down to the hormone therapy that was reducing testosterone and a side effect of that is smaller testes. I'm not overly concerned about it.

All good so far :)

DAY 13
Well whatever I ate on Sunday did not agree with me so a couple of loose movements this morning, drank my water and headed to the hospital. However, as soon as I arrived I was desperate to go again and so had no choice. Of course holding on to pee at the same time is impossible for me, but, imagine my surprise when I looked down and realised I had a semi erection - not a full blooded one but that was the first time that something has happened naturally without chemical assistance since my RARP (non-nerve sparing)
No idea what was going on but it certainly surprised me.
I had 15 minutes to spare so refilled my bladder with 5 cups of water and no issues reported during the treatment however I did have to find a loo 3 times on the way home LOL
I must remember to be more careful with my diet over the weekends :)

Edited by member 10 Jun 2024 at 14:33  | Reason: Not specified

My op was definitely non-nerve sparing and the only way that it has seen any movement was with VED or stabbing it with Caverject so it most definitely a surprise.

I was a bit concerned when I arrived that there were several people waiting in line for treatment today, especially as I didn't want to make the same mistake as yesterday and so I arrived pretty full and also grabbed a couple of extra cups of water when I arrived. Hoping that they were not too delayed.

About 5 minutes late, the nurse appeared and said that they were backed up on the normal machine so they would use a different one. So we walked down to the green room (the first one was red) and the actual machine looked identical.

However, it didn't sound the same - could definitely have done with some oil on some parts that squeaked horribly as it moved!

Anyway, the bladder was full (yes I knew it was as all I could think of was how to get to the nearest bathroom asap) and so the treatment seemed to be the same duration - 3 minute scan and 2 x 1 minute of the Linac.

This morning I also started the Tamsulosine tablets - these are alpha blockers that prevent narrowing of the urinary tract that can be a side effect of the SRT - it was a preventative measure to avoid bigger complications later as I hadn't had any major issues yet. One of the side effects of the tablets is dizziness but whether that is the cause or not, I'm feeling pretty wiped out this afternoon having just done a couple of cleaning jobs on the car.

I suspect it's more the tablets combined with the general tiredness that started yesterday.

Steve, Interesting that you were given Tamsulosin. I didn't get that during my SRT. Now nearly two years later my urine flow has become worryingly slow (circa 8-9 mL/s). Something I'll be discussing with my urologist in three weeks time. I've taken Tamsulosin previously, prior to surgery. I tolerated it very well and it made a huge difference to my urine flow. I am amazed at your few side effects so far. By this stage I was suffering from mucus farts and significant urinary urgency making it difficult to hold a full bladder. I hope it continues for you.

So I am not sure if this is related to the Tamsulosin or the SRT but I started to get a lot of body itching last night and red skin rashes - notably around my neck, armpits and inside my elbows. Also my anus and end of my penis were very itchy - I guess it's the areas that have the most nerve endings maybe? Because of this I didn't sleep much last night.

I'm taking an antihistamine (Fexofenidine) to see if that helps but I have my regular consult with the radiotherapist on Monday where we discuss side effects so I'll see what she says.

Just a bit uncomfortable, that's all.

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.

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 :) :)

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

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

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!!!

:)

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

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

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.