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User
Posted 14 Jul 2016 at 19:02

Thanks for the update Brian and good that you have made a decision to hopefully sort things out.

Taking part in a trials is a way of giving something back as well as being treated and ultimately helping others, anything that can be done to relieve some of the bad/ long treatments and improve the chance of beating this b****y PCa. I am taking part in the add Asprin trials for five years(started in Jan this year)

Best of luck with your op when it happens in October

Regards Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 14 Jul 2016 at 19:39
Thanks Chris and Woody.

I volunteered because I want some good to come of my decision to have the surgery. In a way also I am relieved that a final decision has finally been made following months of tests and all the waiting around for results. The VANCE01 trial to find a vaccine is very much in its early stages and the full results are probably a couple of years away. I was told on Tuesday that it is likely to go out to other centres including Cambridge as there like Oxford the NHS and the University work hand in hand.

I have no doubt that I will be worrying for England come October!

Brian.
User
Posted 24 Sep 2016 at 21:09

Just a quick update for you all on the Vance01 trial. I am about to enter week 11 of the 12 week trial having received the last of the 3 vaccinations at week 8. I go back to the research centre on 4 October to give the last blood samples at week 12 and my prostate will be removed on the 10th of October. All has gone well so far. Oxford University NHS are still recruiting for the trial until the end of the year and the full results and whether they are successful in producing a vaccine for early stage prostate cancer will not be known for 12 months or more. We can only hope that they are successful.

Best wishes to everyone.
Brian.

User
Posted 24 Sep 2016 at 21:19
B

Thanks for the update and thanks for taking part in a trial that may help future PCa sufferers. Hope the results are good. Is the flow still as bad ? All the best for the op in October.

Thanks Chris
User
Posted 24 Sep 2016 at 21:31

Hi Chris.

My urine flow with the help of Tamsulosin is pretty good. It is the inability to empty the bladder that has been the main problem and the need to pee frequently! I can only hope the surgery will resolve this and more importantly of course remove the cancer. Everything will be crossed also that I do not have serious incontinence issues following the operation.

Thanks. Brian.

User
Posted 25 Sep 2016 at 02:52

Brian,

I often find that having had a pee, I very shortly afterwards need to pass a little urine again. In my case this is caused by a bladder diverticulum where a little pouch is formed in the bladder so that all urine is not expelled. This is something that can become more common with passing years. It was picked up from an MRI scan I had in 2008 when I had RT. It seems something is only likely to be done about it in the UK if it becomes a real problem such as leading to infections.

Barry
User
Posted 08 Oct 2016 at 18:19

Originally Posted by: Online Community Member


I go back to the research centre on 4 October to give the last blood samples at week 12 and my prostate will be removed on the 10th of October.



Brian


All the best for Monday and remember to take it easy but keep active after the op and no straining to pass motions. Did you get any feed back on the last blood test is it too early ?


 


Thanks Chris

User
Posted 08 Oct 2016 at 18:37

Hi Chris

Thanks for the advice. I have received no feed back from my bloods but return to the trial centre for the final time on 21 December. I understand from the prostate studies they have done on other participants things are looking good. I hope to receive feedback in due course when they study my prostate after removal. I will of course keep you all informed.
Thanks once again.

Brian.

User
Posted 09 Oct 2016 at 17:00
Good luck for tomorrow...

Hope all goes well.

KRO...
User
Posted 09 Oct 2016 at 20:47
Brian
I hope all goes well for you tomorrow. I really wanted to say thank you for taking part in this trial .
So thankyou.
Xx
Mo
User
Posted 09 Oct 2016 at 21:49

Thank you KRO and thank you Mo

Not sure how much sleep I will get tonight. But knowing just how many kind people there are on this site is just fantastic.
Good luck and best wishes to everyone.


Brian.

User
Posted 09 Oct 2016 at 22:09

Hope everything goes well for tomorrow, you will be in safe hands

Viv

The only time you should look back is to see how far you have come
User
Posted 09 Oct 2016 at 23:08
Good Luck, Brian.

Best wishes,

Steve
User
Posted 12 Oct 2016 at 07:31

To all you kind souls out there. Just to let you know that everything has gone well so far. The surgeon carried out a nerve sparing operation and he is the main man behind the VANCE01 vaccine trials that I have been taking part in. When I see him post op in a few weeks I hope to let you know if the vaccine I was given has had a positive effect on my cancer cells. The trial has been extended to Leeds now as well as Oxford and Sheffield where it first started.
I got home from hospital at 8pm yesterday, still feeling pretty sore. My op started at about 1pm on Monday and my only memory up until about 6pm was waking up in recovery telling the nurses just how gorgeous they were and even more gorgeous when they came into focus. The main pain yesterday was a build up of gas but what a huge relief when I started to get rid of it. They offered me laxatives in hospital yesterday, I turned them down I was fearing a catastrophe!
I also had trouble with the drain leaking all over the place and have a lot of bruising to my side. Getting the odd twinge in what seems left of the old todger and live in fear of pulling on the catheter. I was given a special padded cushion in hospital incase of a coughs and sneezes. It came in useful when a sip of tea went down the wrong way and also for cushioning my tummy on the way home. My wife must have found every pot hole in Oxfordshire on the way home.
Best wishes and good luck to everyone, I will keep in touch and let you know how things go. Any advice on how to cope from now would be very useful. Thank you all.

Brian.

User
Posted 12 Oct 2016 at 08:26
B

Good to hear all went well. I have been catheterised for over one hundred days in about eight periods,it would take alot of effort to accidentally pull it out. I have caught them a couple of times and it does get your attention. Keep it clean and use something like instilagel to lubricate where the catheter enters the penis if you get sore. I was told to use non perfumed soap /gel when washing around the end. By passing where urine and blood comes out between the catheter and the urethra is quite common and can be quite uncomfortable, but mine only lasted a few seconds to a minute or so. When showering I would remove the bag straps and tuck the tap under the leg strap, when I dried off I would put a dry leg strap on and leave the wet one to dry for the next shower.

I found standing against a wall or the kitchen units helped when coughing or sneezing.


Enjoy the next few nights not having to get up to the loo. Some guys on here have been dry right from day one of catheter removal, I was almost dry after four days after my op. Rather than use a waterproof bed sheet I put a pad inside some snug breifs and then wore a pair of tenna4 pants over the top, l reused the tenna4 again unless I had leaked.


As I said before take it easy but keep active a few steps around the garden and listen to your body.


I look forward to hearing how well the trial has worked.

Thanks Chris
User
Posted 12 Oct 2016 at 08:33
Well done Brian.

Now take it easy and let your body recover.

Gentle walks and the lifting of a full kettle of water is the extent of the exercises you should be doing for a week or two!

Take care

KRO...
User
Posted 12 Oct 2016 at 10:37

Hi Chris,

Shower went well today. Does you belly go down, my youngest daughter is 34 weeks pregnant at the moment and I think my belly is bigger?.

Brian.

User
Posted 12 Oct 2016 at 14:11
B

I cannot say I noticed a swollen belly post op and I never had any problems with the gas. I had lost about 20 pounds before the op and now put it all back on and also look 34 weeks pregnant.

Thanks Chris
User
Posted 12 Oct 2016 at 16:25

Thanks for your story Oxonian.

My initial history is similar to yours.

I have not decided to have the op yet.

Good luck with everything.

User
Posted 13 Oct 2016 at 09:00

Hi folks

Day 2 at home, spent too long in bed overnight and having a few problems with the catheter this morning. A little leakage around the outside. My wonderful wife has changed the bag and it has started to fill again following a little squeezing to dislodge what look like a dollop of congealed blood! Has anyone else had this problem? I am keeping up the fluid intake and feeling more comfortable moving around all to the good.

Thanks everyone.

Brian.

 
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