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Salvage RadioTherapy progress - Waiting worries

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 17 Nov 2018 at 12:09  | Reason: Not specified

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 14 Sep 2018 at 14:14

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 21 Sep 2018 at 18:56

Hi Ian


Thanks for that. It has helped. It is definitely the fallout from an exhasting week. RT plus developing side effects plus a nasty virus plus my son leaving was a lot to contend with. I've finally started realising how little of this journey is in my control,. from side effects to progression.


I got hung up on a few posts about SRT outcomes and went down the rabbit hole.


A weekend break will do me good.


Thanks again!


P

Carpe Prostatem

Show Most Thanked Posts
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 48 cc Left Cores 3/3, Volume = 20% PSA 10.8

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 


 

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 

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 ).


I read your bio - interesting read. I'm slightly (OK a lot ) 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! !
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

Carpe Prostatem

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

Carpe Prostatem

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


 

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?

Carpe Prostatem

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.

Carpe Prostatem

User
Posted 08 Sep 2018 at 17:16

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


Ian

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.

Carpe Prostatem

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?

Carpe Prostatem

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 :) :) :)

Carpe Prostatem

User
Posted 14 Sep 2018 at 11:35

Oh dear!!

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 :) :)

Carpe Prostatem

User
Posted 14 Sep 2018 at 14:14

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!!

Carpe Prostatem

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 :(

Carpe Prostatem

User
Posted 16 Sep 2018 at 14:38
You are not alone - I convinced myself that John would never see those things. In the event, he has seen them all go off to uni, attended 7 graduations, walked 2 daughters down the aisle and acquired 3 grandchildren. A busy 10 years, if you add in diagnosis, recurrence, climbing Kilimanjaro, two new knees and having to put up with me.

Dark days have to just be accepted as what they are - tomorrow will be happier.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 16 Sep 2018 at 17:25
Thanks for your kind and thoughtful words, Lynn.

I've got a lot going on. RT underway, son leaving, foul cold (hope not flu), contract ending at end of month.

I feel like someone has cut my strings right now.

You are right. A good nights sleep (and a gallon of lemsip) and tomorrow is another day.

P

Carpe Prostatem

User
Posted 19 Sep 2018 at 19:30
Continual brain fog since the cold at the weekend and today I could barely drive to the hospital and back, I was so tired. Mood quite down and hard to do things.

I think it is a combination of HT, RT, meds and my generally broken brain all conspiring to make this a crap week but I keep telling myself there are people far worse off.

Carpe Prostatem

User
Posted 21 Sep 2018 at 07:21
Hi all

I woke up this morning to a small bloodstain surrounded by a pale stain where my penis would have lied when sleeping face down.

I did not wake for a pee overnight.

We could not find any skin damage to explain this.

I suspect this is an early side effect.

Have not noticed any blood in urine flow to date.

I will notify the Radiologist and wear pads overnight.

Three weeks in.

is this usual?

Cheers

P

Carpe Prostatem

User
Posted 21 Sep 2018 at 11:25

It sounds like a side effect but you are right to mention all these things to your team.


Personally I didn’t have any bleeding or discharge but 18 months or so later my continence isn’t as good as it was before salvage RT.


Ian

User
Posted 21 Sep 2018 at 14:36

3 months post-SRT.  No bleeding.  Incontinence worse than before.  Fecal leakage an issue.


Ulsterman

User
Posted 21 Sep 2018 at 14:58

Cheers Ian and Ulstermann


Sounds like a bl**dy lottery, doesn't it!


The duty radiologist just said it was expected and to keep an eye on it.


Mentally at a low ebb at the moment - trying to deal with the fact that SRT is not very good at ensuring survival whilst trying to keep a happy face for my family is hard work.


P

Edited by member 21 Sep 2018 at 15:15  | Reason: Not specified

Carpe Prostatem

User
Posted 21 Sep 2018 at 17:28

It is tiring going through the salvage RT. Try and think of positive things each day.


It has been a nice day where I am and despite some dark thoughts, I am trying to accept that things are good today.


None of us can see further than that.


It also helps that my wife and I are going to Menorca Menorca on Monday for two weeks!


None of this is meant to be trite or offensive, wishing you all the best,


Philosophical Ian!

User
Posted 21 Sep 2018 at 18:56

Hi Ian


Thanks for that. It has helped. It is definitely the fallout from an exhasting week. RT plus developing side effects plus a nasty virus plus my son leaving was a lot to contend with. I've finally started realising how little of this journey is in my control,. from side effects to progression.


I got hung up on a few posts about SRT outcomes and went down the rabbit hole.


A weekend break will do me good.


Thanks again!


P

Carpe Prostatem

User
Posted 22 Sep 2018 at 09:08
Sorry for whingeing a lot lately by the way.

Carpe Prostatem

 
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