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Salvage RadioTherapy progress - plodding along

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 19 Mar 2019 at 15:32  | Reason: Not specified

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 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 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

User
Posted 30 Sep 2018 at 19:08

Day 20 update. No physical side effects. Really surprised by this. Even had most of a bottle of red on Friday night and that did nothing apart from make me grumpy the day after. I'm grateful. Have even managed to temporarily wall off the "little me" worrying about poor outcomes for now. All I can hear is muffled noises from the basement where he is arguing with my Id :)

I'm looking forward beyond this now. I parked most of the dient and supplement stuff because it was too much to think about at the time but need to plan for post RT. I am going to check with the radiologists and see if I can back on Vitamin D, Pomi T etc. either now or at the end of RT.

The big question I have is going back on daily aspirin. I know I will get short shrift from my onco if I ask about going on the ADD ASPIRIN trial but want to do anyway so I shall say "I am doing this unless you explicitly tell me not to". Are there any contra-indications for aspirin during and after RT?

Cheers

P

PS - handed my final thesis draft in for review this week - thanks again to those who helped!

Edited by member 04 Oct 2018 at 12:21  | Reason: Not specified

User
Posted 19 Oct 2018 at 16:59

Just had my end of SRT review with the Dr.

After that a faster zap as the imaging arm was playing up. They said that as I had done so well on imaging and placement they were happy to zap away based on markers alone. Got me out quicker!

One session to go on Monday!

Was asked about side effects and said "OK apart from a couple of dodgy days".

He said no more HT. I asked why (knowing full well) and he said with my pathology (T2C and just a PSA rise) the risks outweighed the benefits. I guess I can take that as a positive.

PSa and T check in four months.

Asked about aspirin and keto and he basically said "on your head but meat keto is a bad idea." I said it would be vegan / pescetarian vegan.

Final words - "sometimes SRT does not work" and neither of us broached outcome stats.

I am just going to ring the bell tomorrow, have a few glasses of wine and reflect on the fact that I have a good life and it could be a hell of a lot worse!

Onwards and upwards!

P

 

Edited by member 19 Oct 2018 at 17:03  | Reason: Not specified

User
Posted 19 Nov 2018 at 22:14

Ian

I appreciate that - I felt really guilty (still do a bit but that is my problem not yours ). Glad you enjoyed your choir. So do the three tenors have competition from you?

What I realised is that I have been circling the drain on this issue so earlier tonight I broached it with the radiotherapy nurse specialist hosting the cancer survivors course I am on (HOPE course is a great course by the way) and she said they would not hold things back unless they thought I would top myself and might not mention things if they thought them not important. She said she would get my onco nurse specialists to ring me tomorrow.

It made me realise I have been nervous about contacting them as I felt I was wasting their time / felt intimidated. I now know it was better all round to bite the bullet.

Anyway, feel free to vent or PM me if you need to let off steam.

Positive vibes sent your way.

PP

User
Posted 20 Nov 2018 at 08:37
The last few days have made me realise that over-digging into the science actually causes more harm than good. Getting so much information from so many sources is overwhelming and stressful. I think it is also a form of avoidance behavoir in my case (avoiding contacting the hospital).

I have addressed that by requesting a chat with my uro onco nurse to hash it all out and draw a line under it. After that I'll try and focus solely on wellness.

I'm not comfortable with this approach but that probably means it is the right one. I'll try and keep my posts on wellness and general questions and sending good vibes other people's way from now on.

Wish me luck.

P

User
Posted 21 Nov 2018 at 09:38

Morning everyone,

For me personally, distraction helps, but not always. I had one of my grandchildren stay overnight on Monday and right in the middle of fun and laughter (I was Spiderman v his Ironman) I had a strong feeling of melancholy sweep through me, you'll all understand it, will I see him become a teenager ? an adult ? Anyway...I let Ironman win ! Another kind of reaction happened a week or so ago whist watching a Man City game. I always look for Brian Kidd, one of the team coaches who was treated for PCa back in 2004, and when I see him I'm always boosted somewhat..but, he wasn't there and I even had a pang of low level panic !! Just look what this disease does to us. As I write, I'm looking out at very miserable, bleak day, the type that can bring people down a good few notches, but I know that I'll feel different when I've been to the gym, have my lunch out, then have a pint with a few of the lads in the pub. None of these fellow pub goers know about my cancer nor would they ever be able to tell with my happy demeanour in the boozer. I prefer it that way as I need certain areas of life to be a PCa free zone. I'm seriously considering driving for a local charity transport service that takes people for treatment to Sheffield, one that I used for SRT and was absolutely invaluable. Now, I know this sounds contradictory after writing the above except that I believe helping others and being proactive helps a lot, something you as contributors on this site will understand. Take care all and lets keep trying to ride that wave.

Paul

 

 

User
Posted 21 Nov 2018 at 11:45

Hi all

Thanks for the kind words. I appreciate them. I do need to get that separation of time away from the disease I think.

One last update on the main issue before I close down this topic.

I had a chat with the very kind and helpful rad onco specialist nurse just now and she was very good at helping me ease my worries.

She said that the pathologist who did my prostate is know for getting interested and working late over anything out of the ordinary and flagging it up. That did not happen which is good.

She also said that anything small cell or signet ring related would have been called out.

I had one larger 4+3 and one smaller 3+3 tumour.

She said she would email me the path report. The fact that she is doing this when she knows I am a worrier is probably also a good sign :)

There was some confusion over the relative volume - the GP letter said 3% and the path report said (I think nearer 10%).

She did admit that she had never come across mucinius but had looked up the same research as me and could see where I was coming from with the more recent better news. She had come across signet ring patients and they had all had their risk factors made clear to them up front. I did not have that.

She said basically I have to see what happens. I think from this I can assume that I am in the same boat as everyone else in terms of my diagnosis.

What this means is that I am going to try put this aside and take the advice of the kind peeps who just posted and start looking at the positive things in life.

Thanks all for your patience with my wobbles.

PP

Edited by member 21 Nov 2018 at 11:47  | Reason: Not specified

User
Posted 12 Dec 2018 at 10:57

In an idle moment I re-did my MSK Nomogram, now I am six month’s post-surgery.

I was surprised that if you put in different months of undetectable PSA into the calculation, the longer the chances of no recurrence rise exponentially. Even changing from six to nine and twelve months show appreciable differences.

They all look a bit grim at the ten year prognostication though. So much for being ‘cured’.😟

All say my chance of survival for fifteen years is 98%.😁

Cheers, John.

https://www.mskcc.org/nomograms/prostate

Edited by member 12 Dec 2018 at 11:07  | Reason: Not specified

User
Posted 12 Dec 2018 at 16:56
Hi PP, I was given the PET scan because my oncologist was convinced (still is) that I have micromets in a lot of places. He ordered the Pet scan to have a look at that with the proviso that if the scan found mets then I wouldn't receive salvage radiotherapy.

The scan didn't find mets so we pushed ahead with SRT but he did warn me the scan was probably a false negative result due to the sensitivities of F18 Choline.

I so hope he is wrong or I am bgurred.

Ido4

User
Posted 20 Dec 2018 at 15:34
My onco McMillan Nurse has ring me back, talked it over and moved it forward two weeks. They are absolute stars the two I have.

Apparantly two weeks of clinics were cancelled. Something something Tory cutbacks.....

User
Posted 31 Dec 2018 at 13:41
Lynn - thanks. I forgot that I am protected (It a;so counts as a disability). I am also going to review my retirement options as well as I hate idea of of being a desk jockey for any length of time, illness notwithstanding!

Francij1 - think caffeine withdrawal and a mild hangover bit my bum there. The withdrawal is due to the fact I found out something this last week about my lifestyle that I was in denial about. I did a cold assessment of my caffeine intake recently owing to some palpitations and realised I was in denial about mega dosing caffeine with poor hydration. Not only the physical side effects (budum budum budumptity budumptity budumptity budumptity bum urgh that does not feel right) but the high levels of anxiety. I think the caffeine was countering the meds I am on. Allowing for Xmas booze I feel a lot better with the crashes directly correlated to naughty drinkies.

What was interesting about having a clearer head was that something was bugging me about what I originally posted about my recurrence and with a rare very clear head went back to my calendar and reviewed the dates things happened. It turns out I was a bit innacurate in my reporting due to no dount being in a right tizz and rushing things all the time. My BCR was actually nigh on ten months (not the random numbers less than that that I kept posting) and it was nigh on ten weeks between the 0.16 and 0.24 owing to the rebooked delayed onco appointment. Caffeine and stress clearly destroyed my mahematic ability. These numbers are a bit better but they are still what they are.

What it does show is that I needed to weed out lifestyle issues that were hidden to me or I was in denial about that were having an effect. The take out is that it is useful to stop, take stock and listen to yourself and see what feels off then do something about it.

Next steps - no booze after New Year and back on the diet and fitness and find a bl**dy job.

I wish you all a good new year and a 2019 full of good news and good people.

PP

User
Posted 22 Jan 2019 at 14:57
Hi

@Lynn - I'll get to see them and ask about the foam. Thanks for the advice. I'll quote "radiation damage" when I book - that way I might get something quicker than a four week turn around :)

@Ian - sorry to hear that. My symptoms and bleeding are all usual IBS ones for me but they may be masking the procitis. I have removed caffeine altogether. Am going to reduce harsh fibre. I think the fact that I drank like a depressed fish over Christmas and New year may have been at the root of this outbreak. I am cutting down my drinks to one mild session a week and the occasional "eff it" session every month or two to see if that helps. Oddly giving up caffeine was a doddle and made my anxiety levels plummet. Fibre is just eating habits which I can change. Booze is all in the head - I need to get kick out the demons of self blame and fear of the future and whatnot to get sorted. Funnily I was watching a documentary about exorcism last night. We need prostate exorcists :) :)

User
Posted 26 Jan 2019 at 01:18
I know of Horan's theory and I hold with some of it (but not all). I think it is absolutely right that men have been sold a line with the promise of cure - no responsible oncologist ever talks about a cure for cancer; that is just a word peddled by lazy journalists. Lots of men seem to achieve a full or at least sustained remission but I suspect that if men lived long enough, most would have a recurrence sooner or later. Take my dad; 60 at diagnosis, successful RP, unremarkable pathology, undetectable PSA (ultrasensitive) for 13 years and then a recurrence. Doubling time of around 2 years, and now 82 years old, Mr P estimates that it will be 20 years before it kills him.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 26 Feb 2019 at 16:56
Cheers

I was right at the bottom end for normal males. My small prostate is a correlation with this.

Onwards and upwards. Crossing fingers tou get similar good news 🤞👍

User
Posted 19 Mar 2019 at 23:04

Not sure if its typical but 0.07 and remaining low would seem good?

 

Ido4

User
Posted 23 Jun 2019 at 11:26
Just got to get a blood draw for Wednesday now 😱
User
Posted 11 Aug 2019 at 16:35

Did they do any scans before salvage radiotherapy? If PSA is 0.1 and not <0.1 I would suggest repeat tests to confirm. Very stressful time for you. 

Unfortunately HT does case fatigue and a reduction in fitness but it will benefit you greatly to keep exercising as you probably know. There are plenty men here who found their times and distances were poorer while on HT.

 

Ido4

User
Posted 11 Aug 2019 at 21:54
It could be any one of a number of reasons. As Ian suggests, you need more tests to get a trend. You may also need to check dosage rates and timing as if these are off that can have an effect. Keep going with the fitness and keep as positive as you can.

PP

User
Posted 11 Aug 2019 at 22:43
The RT can cause PSA to rise temporarily; you won’t see your lowest reading (the nadir) until about 18 months after the treatment finished. Some oncos would have discouraged you from even having a PSA test at this point; it is much too soon to be indicative of anything.

Bicalutimide side effects hit some men harder than others, particularly the really fit guys. John couldn’t stand it and gave up early ... not to be recommended but so far he seems to have got away with it. At least bicalutimide is out of your system quite quickly; you will regain your fitness eventually.

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

User
Posted 11 Aug 2019 at 23:31

Was just writing a reply, but Lyn said most of it so i deleted that part!

The RT doesn't kill all the cancer cells immediately, but it should have left the DNA in the remaining cancer cells sufficiently faulty that they cannot multiply anymore. Some will still live for a while before they die. This is sometimes referred to as the cooking time and that is up to 18 months for prostate cells. Your PSA nadir is when they finally die.

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 Feb '19 PSA 1.2 

User
Posted 21 Jul 2018 at 13:10

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

OP edited

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.

Ido4

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

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

 

 

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

Ido4

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.

 

 

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

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

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

Ido4

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 :)

 

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

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

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

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 :(

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

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.

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

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

Ido4

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

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!

Ido4

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

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