Post RP and SRT journey - July 3023 PSA test update - - Page 3Localised cancer

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.

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

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.

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!

User

Posted 22 Sep 2018 at 09:08

Sorry for whingeing a lot lately by the way.

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

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 30 Sep 2018 at 21:37

That's a good update. John also had no adverse effects apart from needing an occasional power nap at his desk in the afternoon - he carried on with the cycling, gym and rugby training throughout.

I have never read anything that suggested aspirin should be avoided during RT.

Well done for getting the thesis in :-)

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

User

Posted 01 Oct 2018 at 14:50

Pete

As soon as I was diagnosed in November 2016, my urologist put me on 75mg of enteric coated daily aspirin. He stressed the need for the enteric coated tablets. I'm not on a trial. I took it throughout salvage radiotherapy. I suppose I should check it's still ok, but I've had no issues from it - at least none that I know of. He also put me on a daily Vitamin D tablet and a statin.

My SRT did not go as well as yours, so you're a lucky man (well, none of us are lucky, but you know what I mean). Hopefully, you will remain side effect free, but I was told that the two weeks after treatment could be more difficult than when on treatment, so be prepared, just in case.

I've just spoken to one of the specialist nurses from PCUK. Three months post SRT, I'm now soiling myself regularly. I've soiled myself when in work, when out shopping, when driving the car. If I break wind, blobs of mucus come out. It's not fun and it's actually becoming quite distressing now. I'm contacting my oncologist through my nurse for advice. I've had problems ever since the SRT, but it is lately getting worse.

All the best with the rest of your treatment.

Ulsterman

User

Posted 02 Oct 2018 at 09:18

Thanks Lynn. I am going to ask forgiveness in the case of the Aspirin rather than seek permission :)

Ulsterman - I am going to do both Aspirin and Vit D. No chance of my surgery every prescribing statins for me :( Sorry to hear about your side effects. I have had three or four fart related hull breaches in the afternoon after taking the enema. Luckily I was at home but you are right, it is a pain in the arse. Did you see what I did there? :)

Quick question to all - Do I need to tell my dentist I have cancer from a cross contamination risk management perspective? I remember the hoo haa with dentists in the 90's with vCJD and instrument sterilisation so don't want to put anyone at risk. I suspect it is a non issue but need to be sure.

Just need to let off steam now. We were going to visit and old friend of ours dying from an agressive S4 lymphoma but I got a text last night saying it was not a good time to visit so I suspect things are getting worse and we may not see her again. Strangely, I feel more angry and upset over her situation than my own especially because there is nothing we can do other than be there. Every day, I hate this f*cking disease more and more with a bitter passion as I lose more people to it.

User

Posted 04 Oct 2018 at 12:20

I spoke too soon.

Latter half of my bowel motions hurt like hell now.

Also have discomfort in right groin.

Noticed it getting out of the bath. Being overweight, my organs squish up and I felt a twinge in the lymphodemic area to the right of Mr Stumpy in the fat pad.

Edit: Had a conversation with the review specialist. Am stopping the enemas. She reckons it is side effects from them and general tissue irritation from the RT. Nothing unexpected just rather sudden.

Edited by member 04 Oct 2018 at 16:05 | Reason: Not specified

User

Posted 17 Oct 2018 at 22:35

Hi all

Things have settled down now physically and mentally.

I have an onco review on Friday and was wondering what to expect / ask.

I’m going to raise aspirin again and possibly keto diet. Other that that I’m drawing blanks.

Cheers

Edited by member 17 Oct 2018 at 22:35 | Reason: Not specified

User

Posted 17 Oct 2018 at 23:13

Generally, these are quite short appointments just to check with you about any side effects from the RT that may be causing you concern. S/he is unlikely to be able to tell you anything about how successful it has been but as I think you are coming up to the end of the 6 months HT, you could ask when s/he expects your true PSA to start showing?

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

User

Posted 18 Oct 2018 at 06:38

Cheers Lynn

I understand that it can be quite a while after RT and they don’t draw blood for a good few months?

I know this is going to be a long and probably stressful wait but I am going to do my damndest stay positive.

Edited by member 18 Oct 2018 at 06:42 | Reason: Not specified

User

Posted 18 Oct 2018 at 07:45

Originally Posted by: Online Community Member

Hi all

Things have settled down now physically and mentally.

I have an onco review on Friday and was wondering what to expect / ask.

I’m going to raise aspirin again and possibly keto diet. Other that that I’m drawing blanks.

Cheers

Interested in their response to aspirin and keto....

User

Posted 18 Oct 2018 at 09:53

I suspect it will be "unproven, don't do it!" :)

I will probably do it anyway :)

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