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Post RP and SRT journey - July 3023 PSA test update

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User
Posted 09 Aug 2018 at 20:52

Yea Lyn I do need to relax, especially today as the "Boo Hoo poor me" hormones are playing up :)

Sod it - I'll releax the diet rules and enjoy myself but I won't extend to bacon butties unless I end up really stuffed!

General question - my second jab today was a right male hen up due to paper trail issues. I'm getting it done tomorrow (the phleb nurse was an angel and sorted it all out). As part of that I found out that they generally give 6 month jabs at my surgery (palliative) so I am an exception at three months (salvage). Conversations elsewhere around how long to have HT with RT made me wonder - should I ask for longer on the HT for better 10 year odds or will I get told to lump of earth off (lets face it budget is an issue).

BTW - I am trying out new naughty word alternatives as per an earlier conversation :)

P

User
Posted 09 Aug 2018 at 21:14
You could do but I think a lot of men would want to be off the HT to get to the point of finding out whether it has worked.

Right male hen took me a while :-/

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

User
Posted 10 Aug 2018 at 07:07
Re bacon we buy the Lidl Parma ham it's just meat and salt (no nitrates or preservatives) also so thin you hardly get anything but it tastes amazing. It's only an occasional treat but it is grest fried (arrgh!!) in a wrap with egg 😊.

I believe time will prove unfermented dairy and processed carbs to be the real nasties so occasional cheese and keto low carb is the way to go.. Got to get calcium from somewhere and 10 bags of spinach takes a lot of eating! !

User
Posted 18 Aug 2018 at 17:32

Hi a

Thanks for the replies. They have helped.

A quick update:

Had the second jab on Friday - all fine. Nurse was great.

Had the worst bout of stomach / bowel issues of my life on the following Tuesday - had three hours sleep and lost three pounds overnight.

Have suffered a lot of fatigue and insomnia this week as well.

Too tired to assess mood but generally grumpy I would say.

Co-incidence or down to the second jab kicking in big time? Will it get better?

P

User
Posted 18 Aug 2018 at 17:37
It is easy to assume that everything is to do with the cancer or treatment. It may be that your bad stomach was completely unrelated.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 04 Sep 2018 at 15:34
Back from holiday...

So I had my first round of 33 today.

Had the chat then the enema and fluids routine then zaps away!

Staff were kind and helpful and the actual session was more scary in my head than reality.

Schedule fairly good as mainly just after lunch with a few rarlies and lates.

I have a free car park ticket and work is being flexible.

A good start.

Here is something that tickled me. I never knew until I asked today that the RT is delivered by intense X Rays. I had visions of uranium ray guns or such like.

P

User
Posted 04 Sep 2018 at 16:34

Good luck with the rest of the sessions P.

The RT is delivered by what are termed "hard" x-rays, images are taken using "soft" x-rays.

They are a high energy part of the electromagnetic spectrum. The highest energy in the spectrum belongs to Gamma rays.

See here.

 

Sorry sometimes I can't help myself!

 

Ian

 

Ido4

User
Posted 07 Sep 2018 at 23:23
Cheers Ian

Learning as I go!

Talking about learning, I am only having 33 fractions not 37.

Anyone know why this might be?

User
Posted 08 Sep 2018 at 09:30

Pete

i was originally scheduled 37 but was reduced to 33.

onco said 33 is the standard treatment but could not

really explain why she had originally said 37.

anyway, by the time you’ve been 33 times you’ll 

be glad it wasn’t 37!

ulsterman

Edited by member 08 Sep 2018 at 09:32  | Reason: Not specified

User
Posted 08 Sep 2018 at 16:18
Cheers Ulsterman

I feel like that already :) Not from the RT but from my anti-d meds. It appears that one of the side effects is sudden movement triggered blood pressure changes. Had a bad bout causing severe dizziness today which kicked off a bad panic attack and had to get checked out. Upshot is I need to get to the GP and change prescription as the one I am currently on is "old school".

Annoying thing is I was in such a good mood this morning and it has dragged me right down. I'm fighting my way back now because I'm fed up with my body screwing me over.

User
Posted 08 Sep 2018 at 17:16

Hopefully a new med will work without those sort of side de effects.

Ian

Ido4

User
Posted 08 Sep 2018 at 17:35
I hope so. On top of the HT side effects it is a royal pain in the derriere. It doesn't help that I blame myself for not being able to just press on through it. Stupid but there it is.
User
Posted 08 Sep 2018 at 19:31

37 fractions each of 2gy has been the norm for quite some years now for primary RT and as I read the NICE guidelines is still the standard However, following good results from the large CHHiP trial for two arms of 19 and 20 hypofractionated higher doses, the latter is becoming increasingly available. Perhaps 33 fractions mentioned is now considered appropriate for salvage RT after surgery, after all with no prostate presumably the target is smaller?

 

 

Edited by member 08 Sep 2018 at 19:39  | Reason: Not specified

Barry
User
Posted 09 Sep 2018 at 09:56

Hi Barry

Thanks. I will enquire tomorrow.

On another note, feeling better than yesterday but feeling very vulnerable as the dizziness / PA really took it out of me mentally as much as physically. I'm stressing about my body now. I have a floating lump on my knee which has definitely been there for a over year, fairly sure for much longer but can't remember exactly. It feels solid and a bit plasticy and (probably because I have been poking it) occasionally twinges. My knee as a whole is a bot of a mess. The skin above it is slightly discoloured. I *think* it is an encysted broken off small fragment of knee joint (bone, tendon or whatnot). I know for a fact that it was there when my PSA went down to 0.05 post surgery. Given the age, the fact that it was there when my PSA dropped and is floating and rather hard, I am fairly confident this is not a met of some form. Am I right?

User
Posted 14 Sep 2018 at 11:17
Tip of the day:

When two weeks into pelvic RadioTherapy, never, ever, ever, *ever* eat a lot of beetroot the night before and then forget you ate it the day after :) :) :)

User
Posted 14 Sep 2018 at 11:35

Oh dear!!

Ido4

User
Posted 14 Sep 2018 at 12:29
I nearly had a heart attack until my brain caught up and realised I wasn't bleeding out :) :)
User
Posted 14 Sep 2018 at 14:14

I am sorry if this sounds a bit cruel but your comments about the beetroot did make me laugh. Still chuckling now.

All the best with rest of your treatment.

Kevan 

User
Posted 14 Sep 2018 at 21:42
Feel free to chuckle. That was the intent of my post :) We all need some light hearted news here now and then!!
User
Posted 16 Sep 2018 at 14:19
The reverse today.

We just dropped my son off at Uni and I have been fighting down an awful of feelings about things like not making his graduation.

Having a massive head cold / pensing flu does not help :(

 
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