Good news- so far

User

Posted 24 Oct 2016 at 15:28

Hello everyone

Had a good day in the urology department having attended the Trial Without Catheter clinic. Out it came bang on 8am just 2 weeks after RP. Had to hang around for a while in order to pass water 3 times. Passed with flying colours with a post void residual of 43mls! This compares with the 500 plus mls I was hanging on to pre op! Continence so far is also good with little leakage, told to keep up the pelvic floor exercises.

Have to visit the hospital on 7 November for physiotherapy and help with ED. Will have a post op follow up in about 6 weeks.

Best wishes to you all.

Brian.

User

Posted 24 Oct 2016 at 15:28

Hello everyone

Have to visit the hospital on 7 November for physiotherapy and help with ED. Will have a post op follow up in about 6 weeks.

Best wishes to you all.

Brian.

User

Posted 24 Oct 2016 at 23:56

Good news Brian, very happy for you.

Take it easy... and good luck for next appointment.

KRO...

User

Posted 22 Nov 2016 at 16:16

Hello everyone

The Prof was very pleased with my progress when I met him today for my 6 week post op appointment. Have to continue to have a 3 monthly PSA test with a follow appointment. I also met the lead researcher running the VANCE01 trial in Oxford. It is I am afraid too early to give you an update on whether or not the vaccines are looking good. Of interest to you all is that the research is also taking place in Sheffield, Leeds and more recently Cardiff, so a lot of effort is being put in to finding a vaccine for early stage prostate cancer. I have my final VANCE01 follow up on 21 December.

My next move is medication to tackle ED, and to consider going on the ADD-ASPRIN trial lasting 5 years, aimed at stopping/delaying the possible return of cancer. I understand a number of members are already on this.

Best wishes to all.
Brian.

User

Posted 26 Feb 2017 at 10:06

Hello everyone

PSA four months post op now down to 0.01 and continence fully restored so I have an awful lot to be grateful for. Still working on ED however just been prescribed the maximum dosage of sildenafil and I have purchased a pump. I have a follow up appointment at the Churchill Hospital on Tuesday so I will ask how they are getting on with the VANCE 01 trial and will keep you posted.

Good luck and best wishes to you all.

Brian.

User

Posted 24 Oct 2016 at 15:38

Good news, so far, Brian.

Try to take it easy and not do too much. Don't overestimate how much you can do.

Good Luck.

Steve

User

Posted 24 Oct 2016 at 17:49

Sounds like a good start, I second Steve's comments about not doing to much.

Thanks Chris

User

Posted 24 Oct 2016 at 18:04

All sounding good, Brian. As the others have said, take it easy and be kind to yourself for a bit.

Very pleased for you.

Kind regards

Kevan

User

Posted 24 Oct 2016 at 18:58

good news Brian take care Andy

User

Posted 31 Oct 2016 at 20:58

Hi Brian

Excellent news on all fronts. Brilliant.

Kind regards.

Kevan

User

Posted 31 Oct 2016 at 22:20

Hi Brian
That's the best news you could expect 👍🏼 My dad too was given results of clear margins a few weeks ago so can understand your relief
Take care
Viv X

The only time you should look back is to see how far you have come

User

Posted 01 Nov 2016 at 08:52

Brian

Great news about the margins, really good to hear. I look forward to hearing the results of the VANCE01 trial, perhaps a major breakthrough.

Thanks Chris

User

Posted 16 Nov 2016 at 17:59

Hi Brian

I am so pleased for you - that is great news so no wonder you are sounding pretty chuffed. Hope that your physical recovery is going well.

I was feeling quite pleased that I passed my PCV/LGV medical this morning for another year but I think your news trumped that.

Kind regards

Kevan

User

Posted 16 Nov 2016 at 18:21

Thank you Kevan

I hope you continue to enjoy your part time job. My recovery is going very well thanks. I have recently re started my voluntary work. I visit two gentlemen aged 95 and 88 years young for a chat and a cuppa. Looking forward to helping them later with odd diy jobs and shopping.

Best wishes

Brian.

User

Posted 16 Nov 2016 at 19:00

Great news, hope it continues for a very long time.

Thanks Chris

User

Posted 17 Nov 2016 at 10:28

Good news Brian...

Glad to see that you are recovering well.

Keep it up!

KRO...

User

Posted 26 Feb 2017 at 13:58

Great news. Hoping we can post the same 4 months post op.

User

Posted 26 Feb 2017 at 15:56

Nice one Brian. Just the result everyone wants. Best wishes

User

Posted 27 Feb 2017 at 02:19

Great news, Brian.

Just the type of news we want to hear.

Good Luck.

Steve

User

Posted 27 Feb 2017 at 11:48

Good news hope it continues that way. Be interesting to hear how the trial has gone.

Thanks Chris

User

Posted 27 Feb 2017 at 12:45

Great to read good news.

The best for you, Brian.

Good luck!!

Lola.

User

Posted 28 Feb 2017 at 17:18

Four months post op is still quite early for ED recovery some guys have taken three years. What do you call the maximum dose of sildenafil ?

As regards the trials I was looking for something instead of RT for recurrence, but there does not seem to be anything.

Thanks Chris

User

Posted 28 Feb 2017 at 19:37

Brian you will get there I hope. Just be patient. Four months is nothing and I'm getting great recovery but only at 18 - 20!months. Well worth waiting for. !!
Chris please research your recurrence and effectiveness of RT. You could just go HT if cure is unlikely etc. So sorry for you especially that this has happened.

User

Posted 28 Feb 2017 at 22:01

Thanks for the encouragement Chris and Chris. I am by no means down in the dumps, if someone had said I would have made this much progress after 4 months I would have snapped both their hands off. By maximum dose of sildenafil I mean a 100mg tablet, l understand they are supplied as a 25mg,50mg or 100mg dose.

Brian.

User

Posted 28 Feb 2017 at 23:34

Is that 100mg sildenafil daily or have you been restricted to 4 or 8 per month.

Thanks Chris

User

Posted 28 Feb 2017 at 23:58

Oh my!!! 100g daily would kill the average bloke after a while!

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

User

Posted 01 Mar 2017 at 16:32

About 12 months after a supposedly non nerve sparring RARP and me getting some stirring in my penis,my consultant prescribed daily 100mg sildenafil.It did not give me full tumecence but has helped keep things healthy. It also had a beneficial effect on my incontinence.

I have taken a few breaks from it when having numerous dilatations and Catheters and I do sometimes cut the pills in half to reduce the dose.

Sildenafil do list sudden death as an additional side effect on the package leaflet, but then say it was not possible to determine that the deaths were related to sildenafil.

Let's hope I am not an "average bloke".

Thanks Chris

User

Posted 07 Nov 2017 at 22:21

Hi all.
I must first apologise for not posting on the site for so long. My only excuse and it is a poor one is that I have been trying to find out some information to update you all on the VANCE01 trial that I took part in before my operation in October 16. At a follow up appointment today I was told that the chaps taking part have shown very good tolerance to the trial vaccines and the trials are going very well with some very promising results. The next stage is to open up the trial to those with more advance cancer.
On a personal front my latest PSA result is less than 0.01 and I now only have to go to a follow up and have a PSA test once every 6 months. I still have ED but have had very good results using a 7.5 micro gram injection of Caverject. I have also developed a hernia above the central stomach scar where my prostate was removed. I have an appointment with a surgeon next week.

Good luck to everyone.
Brian.

Show Most Thanked Posts

User

Posted 24 Oct 2016 at 15:38

Good news, so far, Brian.

Try to take it easy and not do too much. Don't overestimate how much you can do.

Good Luck.

Steve

User

Posted 24 Oct 2016 at 17:49

Sounds like a good start, I second Steve's comments about not doing to much.

Thanks Chris

User

Posted 24 Oct 2016 at 18:04

All sounding good, Brian. As the others have said, take it easy and be kind to yourself for a bit.

Very pleased for you.

Kind regards

Kevan

User

Posted 24 Oct 2016 at 18:58

good news Brian take care Andy

User

Posted 24 Oct 2016 at 20:29

Thank you all for your good wishes. Experiencing some strange gripping pains in the lower pipework as the bladder fills. No doubt due to having the catheter for a couple of weeks! The pains pass as soon as I urinate , I am sure this will soon sort itself. My wonderful wife is making sure that I take things easy, just wish she would warm her hands up before she injects the Deltaparin to safeguard against blood clots! Still 14 down 14 to go so all good news so far.

Best wishes
Brian.

User

Posted 24 Oct 2016 at 23:56

Good news Brian, very happy for you.

Take it easy... and good luck for next appointment.

KRO...

User

Posted 31 Oct 2016 at 18:52

Hi all

I received more good news today. I spoke to my key worker and she told me that the additional tissue samples taken from arround my prostate when they check for " clear margins " had come back clear of cancer. I have a post operative appointment on the 22nd of November and have arranged a PSA test on 11th November. Hope to take the result of the PSA to the surgeon, l also hope to find out whether or not the vaccines I was given as part of the VANCE01 clinical trial had a positive effect on the cancer cells within my prostate.

Best wishes to everyone and thanks for all the help you have given to me.

Brian.

Edited by member 31 Oct 2016 at 18:59 | Reason: Not specified

User

Posted 31 Oct 2016 at 20:58

Hi Brian

Excellent news on all fronts. Brilliant.

Kind regards.

Kevan

User

Posted 31 Oct 2016 at 22:20

Hi Brian
That's the best news you could expect 👍🏼 My dad too was given results of clear margins a few weeks ago so can understand your relief
Take care
Viv X

The only time you should look back is to see how far you have come

User

Posted 01 Nov 2016 at 08:52

Brian

Great news about the margins, really good to hear. I look forward to hearing the results of the VANCE01 trial, perhaps a major breakthrough.

Thanks Chris

User

Posted 01 Nov 2016 at 19:07

Thanks Kevan, Viv and Chris.

Also Viv good news about your Dad. I hope also that he has received good news following his PSA tests post surgery.

Best wishes.

Brian.

User

Posted 16 Nov 2016 at 16:03

Hi everyone

I have just had the result of my PSA test 5 weeks post surgery, 0.02! I am hopeful that will please the surgeon when I see see him next Tuesday. I was a little worried about getting it tested so early as the Tool Kit suggests that the first test should be done around 8 weeks to give the PSA time to dissipate!

Best wishes to you all.
Brian.

User

Posted 16 Nov 2016 at 17:59

Hi Brian

I am so pleased for you - that is great news so no wonder you are sounding pretty chuffed. Hope that your physical recovery is going well.

I was feeling quite pleased that I passed my PCV/LGV medical this morning for another year but I think your news trumped that.

Kind regards

Kevan

User

Posted 16 Nov 2016 at 18:21

Thank you Kevan

Best wishes

Brian.

User

Posted 16 Nov 2016 at 19:00

Great news, hope it continues for a very long time.

Thanks Chris

User

Posted 17 Nov 2016 at 10:28

Good news Brian...

Glad to see that you are recovering well.

Keep it up!

KRO...

User

Posted 22 Nov 2016 at 16:16

Hello everyone

Best wishes to all.
Brian.

User

Posted 26 Feb 2017 at 10:06

Hello everyone

Good luck and best wishes to you all.

Brian.

User

Posted 26 Feb 2017 at 13:58

Great news. Hoping we can post the same 4 months post op.

User

Posted 26 Feb 2017 at 15:56

Nice one Brian. Just the result everyone wants. Best wishes

User

Posted 27 Feb 2017 at 02:19

Great news, Brian.

Just the type of news we want to hear.

Good Luck.

Steve

User

Posted 27 Feb 2017 at 11:48

Good news hope it continues that way. Be interesting to hear how the trial has gone.

Thanks Chris

User

Posted 27 Feb 2017 at 12:45

Great to read good news.

The best for you, Brian.

Good luck!!

Lola.

User

Posted 28 Feb 2017 at 16:32

Hello again and thank you all for your kindness.

Chris
A quick update on the VANCE01 trial. Whilst at the Churchill Hospital today I discussed progress with one of the leading research nurses. Unfortunately there is nothing they can make public but on the positive side they have not been told to stop their work and the trial has also been extended to men on Active Surveillance as well as those undergoing surgery for localised PC. I will continue to ask at my future follow up appointments.

Lola
I hope that all goes well for you your husband and family in the future.

As for my progress the Prof is very pleased but disappointed that the has been no progress with my erectile function especially as he performed nerve sparring surgery. He is going to refer me to the ED clinic.

Once again thanks to all and best wishes for the future.

Brian.

User

Posted 28 Feb 2017 at 17:18

Four months post op is still quite early for ED recovery some guys have taken three years. What do you call the maximum dose of sildenafil ?

As regards the trials I was looking for something instead of RT for recurrence, but there does not seem to be anything.

Thanks Chris

User

Posted 28 Feb 2017 at 19:37

User

Posted 28 Feb 2017 at 22:01

Brian.

User

Posted 28 Feb 2017 at 23:34

Is that 100mg sildenafil daily or have you been restricted to 4 or 8 per month.

Thanks Chris

User

Posted 28 Feb 2017 at 23:58

Oh my!!! 100g daily would kill the average bloke after a while!

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

User

Posted 01 Mar 2017 at 09:37

Sorry should have made clear it is a maximum prescription of 8 per month.

Brian.

User

Posted 01 Mar 2017 at 16:32

I have taken a few breaks from it when having numerous dilatations and Catheters and I do sometimes cut the pills in half to reduce the dose.

Sildenafil do list sudden death as an additional side effect on the package leaflet, but then say it was not possible to determine that the deaths were related to sildenafil.

Let's hope I am not an "average bloke".

Thanks Chris

User

Posted 07 Nov 2017 at 22:21

Good luck to everyone.
Brian.

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