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Salvage RadioTherapy progress - planning session on Monday

User
Posted 21 Jul 2018 at 10:43

Hi all

Rather than spam with multiple topics I will use this one to share and ask questions from now on.

So I got the letter today telling me the date of my planning session and additional diet / enema information. Some good news is that I can express a preference for an afternoon slot which will help with work.

I was suprised at how much I wobbled when I read it. It was a real "this just got real moment" as I think I have suppressed a lot over the last month owing to feeling OK and nothing medical happening. I was just getting into an "I can deal with this" mindset - I guess I just have to get back on the bike and start pedalling.

The low fibre diet sounds really dull especially as I want to avoid dairy products so I guess it is fish, white carb and low fibre veg for the win. My two week holiday at the end of August won't be about beer and rich food sadly.

Other news - told work about what was going on and they are fine. Also second jab due just after the planning session.

I am going to miss the vino tinto but I guess I can make do with low or non alchohol versions.

I am going to continue to exercise as much as I can and keepup the Qi Gong.

Any advice on diet? My main concern is that white carbs along with the HT are going to really bloat me.

P

Edited by member 03 Aug 2018 at 11:22  | Reason: Not specified

Carpe Prostatem

User
Posted 21 Jul 2018 at 12:40
I'm not sure what SRT is...
User
Posted 21 Jul 2018 at 12:56

I Googled it,  "Stereostatic Radio Therapy" ?

 

Gleason 6 = 3+3 PSA 8.8 P. volume 41.1 cc

Left Cores 3/3, Volume = 20%

User
Posted 21 Jul 2018 at 13:10

Sorry - Salvage Radio Therapy - follow up to failed prostate removal.

OP edited

Carpe Prostatem

User
Posted 21 Jul 2018 at 17:13
I know we are all different but I didn’t really venture far from my normal diet when I had ART. I also enjoyed a few beers during that time. No side effects or anything to the degree I stated to wonder if the machine doing the blasting was actually working.

They explained to me that there are the two extremes ie those who have no side effects and those who have the lot. They said most men fall in the middle.

Bri

User
Posted 21 Jul 2018 at 19:10

have to confess that I didn't change my diet at all during my SRT. On the one day when I had a bit of a dodgy tummy I reverted to my gran's cure which was dry toast and digestive biscuits. Something stopped it but whether it was that or not I don't know. Read up on all possible side effects and went prepared for all eventualities but apart from a bit of tiredness in the last week things were ok. I had to drive a 94 mile round trip every day and then get the Park &Ride bus so the bit of tiredness might just have the travelling and hanging around rather than the treatment.

As you say, back on the bike and just keep peddling but I am sure that like many of us you will meet some lovely people during the course of your treatment.

All the best

Kevan 

 

Life doesn't have to be perfect to be wonderful 

User
Posted 21 Jul 2018 at 19:32

Pete

I finished SRT 4 weeks ago.  I had read the various threads on the forum and what is evident is that each hospital has slightly different protocols.

I was advised to eat my normal diet, but to cut out all fizzy drinks and caffeine, eat white bread and eat less fruit.  I asked about enemas and the hospital said it was a big no no.

About half way through the therapy, my waterworks were greatly affected.  I was peeing every ten minutes at one stage and almost wet myself on the treatment table on a few occasions.  I had to get medication to help and, even now, my urination is not back to post prostatectomy standards.  I'm using pads again, but not every day.

More distressing, my poo turned to the consistency of Mr Whippy ice cream and I soiled myself on several occasions.  Things in that area are now back to normal but it did take at least two weeks to settle down.  

Your bowel being empty for treatment is really important and your bladder being at the right volume is too.  One day I was told I had too much wind and needed to fart!  It just seemed such an exact regime.

It's a funny treatment.  You go each day.  The machine rotates very slowly around you.  You feel nothing.  I even wondered what it was really doing.  It seemed a bit magic wand to me.

Despite my difficulties, it wasn't too bad.  And, with my PSA now at 0.006, it might just have done the trick.

Ulsterman

User
Posted 22 Jul 2018 at 22:28
I finished SRT at the end of April 2017. I felt really tired by the end of the second week.I was told I was eating too much fibre so had to peel fruit and cut back on some veg. My bowels became loose but Fybogel did a great job of settling that down. My waterworks were ok during the treatment but a year later I leak more than I did after prostatectomy having to wear a pad occasionally. I also occasionally have some leakage from my back passage.

I found the SRT tougher than the prostatectomy but I remain very active and do pretty much everything I want to do.

Hopefully it’s done it’s job.

All the best.

User
Posted 23 Jul 2018 at 16:11

Hi all

I'm going to stick with it and keep it simple.

Not looking forward to Mr Whipppy though :)

One question - we are off to Portugal in August for two weeks - any suggetions on meal choices for meals out?

P

Edited by member 23 Jul 2018 at 16:57  | Reason: Not specified

Carpe Prostatem

User
Posted 23 Jul 2018 at 17:04

P

As already mentioned different hospitials have different protocols. I was given a book at my planning meeting that had foods to eat and foods to avoid. My treatment included the Easter and spring bank holidays, on those long weekends off I would eat normally, sometimes it did have and adverse effect on my bowels but it was soon back to normal. Getting the right amount of urine in your bladder is very important, very rare but the RT has had a disastrous effect on my bladder. Best wishes for your treatment.

Thanks Chris

User
Posted 03 Aug 2018 at 11:27

Hi all

Planning session on Monday.

Upsides:

- Realising today when it was caused me less of a wobble than getting the letter

- The low fibre diet (probably not perfect but it will have to do) has gone a long way to clearing my IBS

- Feeling generally a lot better in my mind about the future

Downsides:

- Next jab this Thursday

- Fretting a little about the scan picking up mets

- Struggling to lose weight (have not put any on but still feel fatter - water retention and muscle to fat I reckon even with HIIT three times a week)

- Still looking at stats on the web

Carpe Diem

P

 

 

Carpe Prostatem

User
Posted 03 Aug 2018 at 14:08

Hi Pete, I empathise with all those thoughts. I am now 15 months post salvage radiotherapy, still on HT but PSA is undetectable. I’m finishing HT early 2019 and my oncologist is convinced I have micro mets. We‘ll Know the answer once the HT dies down. I’m very much hoping I prove him wrong!

I have tried very hard not to look at STATS on the web, ultimately we’re all different. It’s easier said than done though. 

Hope the planning session goes well and you can get this stage of treatment over and done with.

All the best,

Ian

User
Posted 03 Aug 2018 at 21:05

Thanks Ian

 

im just gonna keep at it.

 

my onco has said once I have next weeks injection and the RT that is it. No long term HT.

 

Guess he wants to see if it fixes it right away.

 

 

Carpe Prostatem

User
Posted 06 Aug 2018 at 15:15

Hi all

Had planning CT scan today.

Was stressed beforehand but whole process was a doddle and the staff were really nice.

Met some lovely people inthe waiting room.

Good thing I asked about losing weight - they said best to keep at the weight you were at the scan for the treatment.

I begin treatment first week in September.

Given the wobbles I have had recently which meant I had to lean on my OH a bit, I hope to God this works.

P

Carpe Prostatem

User
Posted 06 Aug 2018 at 15:59

HI Pete

Glad that all went well with the planning scan today and that you are feeling a bit more relaxed with things.

You said that you met some nice people today and I am sure that you will meet many more during the course of your treatment as it's like belonging to a little club.

September will soon roll round and before you know it the treatment will be over.

I'm sure that your OH was only too happy to help you through this period - I imagine that you have given comfort to each other as it's only natural to feel a few nerves.

All the best.

 

Kevan 

Life doesn't have to be perfect to be wonderful 

User
Posted 06 Aug 2018 at 17:10

Cheers Kevan

I am more relaxed. I have to confess that some of the anxiety was due to a little *too* much vino rosso over the weekend which meant I missed my meds for the night (I never mix alchohol and anti-depressant).

I am realising that the good people we meet on our journey are a massive antidote to the rat race in general and the attitudes that engenders.

It is an elite club and I am getting some tattooes to mark it :)

The upside of September is that I will be part time at work so it should not be too stressful which full time would be.

My other half has been amazing. We have had our rocky times over the past twenty years and on occasion we have taken each other for granted but her strength and reslience is very humbling and is one of the main things that keeps me fighting. My son is a huge support too (even though he never does the dishes https://community.prostatecanceruk.org/Scripts/tinymce/plugins/emoticons/img/smiley-smile.gif).

I read your bio - interesting read. I'm slightly (OK a lot https://community.prostatecanceruk.org/Scripts/tinymce/plugins/emoticons/img/smiley-smile.gif) younger and am staged less but am following a similar path - you had RALP with an early relapse and follow up RT. Exactly the same boat for me which makes me feel less like I am out on a limb.

Cheers!

P

Carpe Prostatem

User
Posted 06 Aug 2018 at 18:05

I’m glad planning scan went well. As Kevin has said the time will pass quickly. I also met some lovely, inspirational people when I had salvage radiotherapy last year. I did get very fatigued as each week progressed. The staff keep an eye on you though and I have nothing but praise for their professionalism and dedication. Good banter too.

All the best,

Ian

User
Posted 06 Aug 2018 at 18:55

Yea - I find that the waiting is the hardest part. Once something is happening I get a lot happier.

It is odd though being in a totally different department and building. You get used to a routine and then it changes :)

 

Carpe Prostatem

User
Posted 08 Aug 2018 at 22:23
I do have one quick question.

Living on white mushy foodstuffs with only fish, fruit and a few other odds and ends has put four pounds on me.

I am sorely tempted to drop the embargo on white meat and go alternate keto / carb days (the old slimming world trick).

I see mixed opinions on eating meat with PCa.

As long as I don't eat whole chickens a day (God, I would love to do that) any additional risks?

I will still keep off dairy.

Cheers

P

Carpe Prostatem

User
Posted 08 Aug 2018 at 23:36
OMG Pete - I think you need to relax a bit while undergoing the RT! Why aren't you eating chicken???? Alternating carb / keto is more likely to mess with your insides. Eat a healthy diet as best you can, and leave the extreme stuff until after the RT is finished.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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

Carpe Prostatem

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! !

 
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