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Radiotherapy paused - AGAIN

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User
Posted 01 Mar 2018 at 14:43
Well so far my salvage radiotherapy isn’t going so well, firstly, one week in I got a chest infection and missed 3 appointments - they just added 3 more on to the end

Then this week I have missed 2 so far and probably another tomorrow (Friday) due to atrocious snowy weather affecting travel as well as short staffing the radiologists

But I have now done 11 out of 33 sessions so a third of the way through and no real issues yet other than some fatigue

Hopefully a smoother road for the remaining 2 thirds

User
Posted 01 Mar 2018 at 15:14
I hope the rest of your sessions go smoothly Bill. It just adds to the stress when dealing with other issues.

Ian.

Ido4

User
Posted 01 Mar 2018 at 16:02

Hope the rest go better for you KB

We can't control the winds - but we can adjust our sails
User
Posted 01 Mar 2018 at 18:14
Hiya Bill,

You've certainly had some bad luck with illness, this current weather situation, and lack of radiologists. Keep digging that furrow mate, you'll get there.Take care.

Paul

User
Posted 02 Mar 2018 at 21:49

Don't let the higher dose worry you - research has shown that giving 3Gy or even 3.2Gy over 20 sessions is as effective as 2Gy over 37 sessions but with fewer side effects. This snow could work out to be a blessing yet!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 15 Mar 2018 at 15:43
On a side note,

Had my 3 monthly PSA test and has gone from 0.2 in December 2017 to <0.1

(Since starting bicalutamide in December)

User
Posted 03 Apr 2018 at 17:06

So far so good, Bill. I hope it stays that way and you can put this disease into the distant past. Good Luck

AC

User
Posted 03 Apr 2018 at 18:28
It’s great when the RT finishes Bill. Sounds like it’s gone to plan eventually too.

Hoping the side effects stay subdued.

Best wishes, Ian.

Ido4

User
Posted 03 Apr 2018 at 19:29

Good luck Bill and well done. Try and enjoy the rest of the year and worry about it next year

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User
Posted 01 Mar 2018 at 15:14
I hope the rest of your sessions go smoothly Bill. It just adds to the stress when dealing with other issues.

Ian.

Ido4

User
Posted 01 Mar 2018 at 16:02

Hope the rest go better for you KB

We can't control the winds - but we can adjust our sails
User
Posted 01 Mar 2018 at 18:14
Hiya Bill,

You've certainly had some bad luck with illness, this current weather situation, and lack of radiologists. Keep digging that furrow mate, you'll get there.Take care.

Paul

User
Posted 02 Mar 2018 at 00:12
Thanks folks

It’s a rough ride without extraneous complications to be sure

I’m gonna try and drive down tomorrow but with about 2 foot of snow on the roads maybe I’ll just write this week off until Monday

User
Posted 02 Mar 2018 at 20:50
Didn’t make it out of my street today - 3 cars were abandoned so the way was blocked - probably sensible not to drive anyway

I spoke to the radiologists who were understanding but they did say they would speak to my oncologist re: possibly adjusting the dose of radiation as I have now had 2 disruptions to my radiotherapy

Tbh I don’t like the idea of being zapped at an even higher dose......

I will I course discuss with them

User
Posted 02 Mar 2018 at 21:49

Don't let the higher dose worry you - research has shown that giving 3Gy or even 3.2Gy over 20 sessions is as effective as 2Gy over 37 sessions but with fewer side effects. This snow could work out to be a blessing yet!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 14 Mar 2018 at 23:54
Well things have gone more smoothly now that the snow has melted, a full week last week and almost another this week - 19 out of 33 sessions done

To report - fatigue in the afternoons is getting worse - but a nap really helps

Also, the radiation seems to be irritating my bowel, more loose movements and more air / discomfort than is usual - with 3 weeks to go hopefully it does not worsen

User
Posted 15 Mar 2018 at 08:23
Morning Bill,

You're more than halfway there mate and it sounds like you're tolerating the treatment reasonably well. You deserve things to continue smoothly after the obstacles you've overcome preceeding /during your treatment. I start 20 sessions of SRT on Monday and I'm already looking forward to it ending!

Take care Paul.

User
Posted 15 Mar 2018 at 09:57
It seems like an eternity I know but at least you are over halfway so on the downward slope. I was lucky that I only experienced slightly loose bowels on three seperate days and I doubt if it was the answer but remembered when we were kids we used to be given dry toast and digestive biscuits for this so that's what I had. The problem had disappeared by the following morning.

All the best with your remaining treatment.

Kevan

User
Posted 15 Mar 2018 at 10:58
Hi Bill, I’m glad you are back on track and now more than half way there now.

I, and a lot of the other men were prescribed Fybogel when the bowel problems started.

It made a huge difference. Also I did what Kevan mentioned, dry toast etc.

I met weekly with a specialist nurse who prescribed the Fybogel right away and got it for me before I left the hospital that particular day. I was told to ignore what the packet said Fybogel worked for as it works for radiation proctitis and loose motions too.

The way it was explained to me was the bowel lining changes quickly and radiation has a bigger effect on fast growing cells like hair, bowel lining and cancer cells hence the issues.

A wee anecdote: one of the other men seemed to be particularly badly affected and had to go in the woods where he was walking his dog. He did his poo into a poo bag he had for the dog! His wife was really angry with him for pooing outside but what are you going to do? I told him about the Fybogel that day and he got some, problem was solved for him.

Worth asking about or just going to a pharmacy and buying some.

Ian.

Ido4

User
Posted 15 Mar 2018 at 15:18
Thanks guys

Had my 20th session today and bowel was almost normal, maybe yesterday was just particularly irritated

I will get some fybogel, I also eat all bran every morning and clementines to bulk up the bowel

User
Posted 15 Mar 2018 at 15:23

It is interesting how much individuals vary - John was on a low fibre diet for the whole RT programme and wasn't allowed bran flakes or lots of fresh fruit. Are you following the advice of your medical team rather than what other members on here have been told to do? Perhaps you are having too much fibre?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 15 Mar 2018 at 15:38
Yes Lynn,

I was advised that if bowel gets very loose to have fibre, but to be honest I haven’t changed my diet from what I normally eat. Usually my bowel is extremely regular, every morning an hour after breakfast I go to the loo.

This has continued through the RT which is convenient as my sessions are at 9:12 every morning - so I get up, eat, shower, drive 20 mins to hospital and go to the loo when I arrive

Then shortly after that I get told to start my 3 cups of water

Things have settled down today to more like normal but I will ask about what the advice is if things worsen or change

User
Posted 15 Mar 2018 at 15:41
I agree Lyn, The medical team told me not eat high fibre foods so had to stop eating my favourite bread etc.

I was told to peel fruit and not eat the skin for the same reason.

Had to eat white bread which I rarely eat.

They also told me not to use “normal” shower gel or creams as they can contain metal.

I used baby wash and zero throughout radiotherapy.

Ian

Ido4

User
Posted 15 Mar 2018 at 15:43
On a side note,

Had my 3 monthly PSA test and has gone from 0.2 in December 2017 to <0.1

(Since starting bicalutamide in December)

User
Posted 03 Apr 2018 at 16:56
Well that’s my final SRT session finished - thank god, feels like I’ve been going there for ages

Nothing much has changed with side effects, bladder all good, bowel slightly different from before treatment but no diarrhoea or anything

Feel a bit exhausted though I must say, hopefully nothing nasty manifests as time goes on, so I guess it’s fingers crossed until the bicalutamide treatment finishes in December 2019 - then the awful wait and see regarding PSA

User
Posted 03 Apr 2018 at 17:06

So far so good, Bill. I hope it stays that way and you can put this disease into the distant past. Good Luck

AC

User
Posted 03 Apr 2018 at 18:28
It’s great when the RT finishes Bill. Sounds like it’s gone to plan eventually too.

Hoping the side effects stay subdued.

Best wishes, Ian.

Ido4

User
Posted 03 Apr 2018 at 19:29

Good luck Bill and well done. Try and enjoy the rest of the year and worry about it next year

User
Posted 04 Apr 2018 at 08:28
Morning Bill, I'm at the halfway point with my SRT(11th session today) and enjoy seeing men and women smiling and quite elated as they leave the hospital after their final treatment. I'm hoping to do what Chris J has suggested , i.e enjoy the rest of the year etc..I need to do this to give my mind respite. You'll no doubt feel a lot more relaxed today not having to go through the rigmarole of going for treatment. All the very best mate.

Paul

 
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