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Salvage RT starts here

User
Posted 11 Jun 2024 at 14:09
DAY 14

Everything went swimmingly today - arrived 10 minutes early and taken in 5 mins before the appointment. The only difference today was that when the Linac kicked in I could swear I could feel something happening. That's the first time and I don't know if it was real or imaginary. Certainly wasn't painful or even uncomfortable, just a sensation really.

I'll have to see if I get the same tomorrow.

Unfortunately no more erections today :)

User
Posted 11 Jun 2024 at 14:27

I wondered where you were going with that yesterday for a moment Steve, when you got to the bit about 15 spare minutes 😂

Edited by member 11 Jun 2024 at 14:28  | Reason: Not specified

User
Posted 11 Jun 2024 at 14:48

They must have zapped your manhood into action Steve🤣🤣🤣

User
Posted 11 Jun 2024 at 16:23
LOL - I don't know if/how/why it's even possible but if I could post photos here then.... well maybe not ;)

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.

User
Posted 12 Jun 2024 at 14:09
DAY 15

Oh dear, a bit of a cock-up today (no, no erections were involved!)

So the time was put back until 13:30 instead of my usual 12:00 so all my timings were out and I didn't drink my water until 45 minutes before the appointment. No problem I thought, I grab a couple of extra glasses of water before the session.

Unfortunately they called me straight in after I arrived and I knew I wasn't feeling full although it was getting that way.

Anyway, I laid down under the machine and discovered that one of the techs was on a teaching course - maybe an intern. So every step was being shown to him and he was adjusting the bed etc. No problem, he was well supervised by the tech.

So they said goodbye and left me alone but the machine did not start - the tech came back in explaining to the intern that he had done something wrong - I didn't catch what is was but something to do with how the machine's panels were arranged.

Wasn't filling me with much confidence at that point.

Anyway, they completed whatever adjustments were needed and the machine started up for the scan.

While I was waiting for the click clack of the bed being remotely adjusted they came back in - now what???

"Sorry, your bladder isn't full enough"

Bugger! Lots of apologies from me and I am sent back to the waiting room to drink 2 full glasses of water - so that was 500ml at home, 2 glasses when I arrived and now 2 more - hmmm.

When they called me back I was fit to burst but the procedure went OK and the tech came back in with a thumbs up - "that was perfect" - I wasn't surprised - there was a lot of pee in that bladder.

Even though I emptied it after the session, it was almost tempted on the way back to do the French thing and pee on the side of the road - that was a lot to hold in!

Anyway, another session done and getting close to half way through! No side effects to report apart from being a little tired.

User
Posted 13 Jun 2024 at 15:18
DAY 16

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.

User
Posted 13 Jun 2024 at 17:09

Steve 

The Tamusolin dizziness (if you get it) is caused by the blood pressure drop (reduced blood flow to the brain). Personally I take mine after dinner, a couple of hours before bedtime. When I wake up in the morning my BP is slightly lower than normal, but recovers as the day goes on.

Day 16 RT and only side effect is fatigue ? You’re doing well 👍.

User
Posted 13 Jun 2024 at 20:21

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.

User
Posted 14 Jun 2024 at 15:26
DAY 17

That's the mid-point of my treatment - 33 in total and #17 completed.

Nothing much to report today apart from a blinding headache that I don't think is related to it - paracetamol seem to be fixing it anyway.

Still tired and a bit lethargic but pushing myself to do the dog walking. I'm also taking Gooses' idea of taking the Tamsulosin in the evening rather than morning - better keep an eye on BP as I am also on BP tablets as well.

Feels a lot better that we are half way through it for sure.

User
Posted 15 Jun 2024 at 12:01
Just a quick update

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.

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!
 
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