I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error
<12

Out of area treatment NHS rights

User
Posted 25 Dec 2018 at 19:15
I have been taking occasional Loperamide to help with bowel looseness and the Loperamide has helped a lot with this.

However, I have had problems with bottom wind, not a gentle breeze but a full blown hurricane at times. This has caused some discomfort not only to me but also to those around me. Discussing this with another vegetarian she mentioned probiotic yoghourt so I decided to give it a try. I was a bit sceptical but started with two a day four days ago. The results have been spectacular! Now I have a gentle breeze at best, no more hurricanes, and the bowel looseness is greatly reduced.

I hope this mention may help others who may search for such information, so I include the words diarrhoea, fart and flatulence for search purposes.

I wish I had known of the benefits of probiotics two months ago, it would have saved me some discomfort.

John

PS Try " Kefir "

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 25 Dec 2018 at 22:40
Thank you for posting. I get acute stomach pain in the morning but am not sure of the cause and this only abates after I have passed wind - will give probiotic yogs a try.
Barry
User
Posted 18 Jan 2019 at 12:57
I am three months "down the line" and I still have some issues, I get tired, I never used to, but now I have a couple of 20 minute naps each day. I still pee up to 5 times a night and night time flow is poor. I guess getting up so much in the night could make me tired.

I have what I think is radiation cystitis, burning when I pee, but not always so maybe that is getting better. I tried cranberry juice and dried cranberries, I think they made it worse!

I wonder if inreasing the Tamsulosin dose would help? I am on 20 mg and I have tried 40mg a couple of times, it seems to help.

John ( a bit fed up )

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 18 Jan 2019 at 17:34
Sparrow, I think mucking around with a prescribed dose is unwise. Might you have a UTI? Perhaps check with your GP and have a urine test?

AC

User
Posted 18 Jan 2019 at 19:03
I don't think I have a UTI, I have no fever, blood in urine etc, however I think I will see my GP for a urine test and rule UTI out ( or in!).

I am not sure how long I should expect these side effects to last, maybe I have to be patient and wait a bit?

John

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 23 Jan 2019 at 16:30
Thanks AC, your remote diagnosis was spot on! I visited the "out of hours" doc over the weekend who did a dip test, told me "something is there" and prescribed antibiotics. Today the burning has gone but the frequency of peeing is much the same.

Still, that's one little problem sorted, and the diarrhoea ( from the antibiotics) should soon clear up.

John

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 24 Jan 2019 at 15:49
Excellent. You were lucky the first anti-biotic worked. Sometimes it takes some experimentation to get it right. But those damned side effects! Very common but short lived.

AC

User
Posted 26 Jan 2019 at 12:24
After a visit to my normal GP I am now also on Oxybutynin 5mg twice a day. They seem to help a bit with the frequency but I was told they take up to a week to fully work. Anybody any experience of this medication?

John

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 26 Jan 2019 at 17:48

Sparrow

I have tried many of the anti spasm medications including oxybutinin, most of them take a while to kick in and I also found they become less effective after contined use. 

Thanks Chris

User
Posted 05 Feb 2019 at 12:59

Todays PSA  1.2  (5th Feb) laughing

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 05 Feb 2019 at 13:21

Good news on the PSA coming down nicely.

Ido4

User
Posted 08 Feb 2019 at 16:03
This morning I woke up with a 100% erection and I realised that I had not had to get out of bed for a pee all night. The 1" or so my penis has shrunk also appeared to have regenerated. I was elated, Then I woke up. ‘If it be thus to dream, still let me sleep!’ ( Twelfth Night).

Fully awake I realised I did have an erection but only 50% or so, and I had only had to pee twice overnight, I searched in vain for the lost 1" however. Still, things are on the mend, no discomfort now either. Booked my 2 month holiday today, so if Brexit happens while I am away in France I might have to claim asylum or something if I need treatment!

John

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 04 Mar 2019 at 13:04

Originally Posted by: Online Community Member
Only four more weeks on Tamsulosin, I wonder if I could finish it earlier? I have a few side effects but have stuck with it because it does help one pee!

I had a phone call from the doctors receptionist yesterday, my presence is required to see the doctor, something to do with a sleep apnea test I had done before the Brachytherapy, the hospital have written to the doc. so I assume that is something else to treat. I have decided that I will deny all symptoms of sleep apnea ( not that I have any of them anyway), I cannot have the hassle of not having a driving licence no matter how short the time will be. Nor can I contemplate wearing a "Hanibal" mask all night.

John

Asthma, Hypertension, GERD, PCa, Gout, Hemorrhoids, Eczma, ED, is this not enough God ?

Oh! Joy! Now I have been diagnosed with Atrial Fibrillation, ( I continue to deny  Sleep Apnea ),I have had  Chest xrays, electrocardiograms, blood tests and so on.  I only went to the doc with a chest infection and since antibiotics failed to work I was put on Predisolone (steroids), these also failed to work and then the tests started, the diagnosis was Atrial Fibrillation, resulting in my lungs being part filled with fluid. So now I am on anticoagulants and diuretics as well as the rest of the medications.   I make it 12 different medications I take at the moment.  I currently feel quite knackered I am sleeping a lot and have no energy at all.

John

Edited by member 04 Mar 2019 at 15:56  | Reason: Speling

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 23 May 2019 at 15:28

After hospital visits, Echo cardiogram, xray of chest, ultra sound of abdomen, stool and urine tests, I was still feeling quite unwell. I couldn't walk more than 50 mtrs without being out of breath and was sleeping a lot during the day.

Having "had enough" I stopped each medication for a week in turn. ( Don't do this without consulting your doctor!) and when I stopped the Amlodipine I felt better after two days. Not completely better but an improvement.

6 weeks on and I am getting there, I actually have some energy!  Moral is, anybody can have an adverse reaction to meds, so be aware.

On the prostate side of things I am now having better erections than before the brachy, that puzzles me a bit, however I am grateful for small mercies :-)

My orgasms are no longer dry although the amount of ejaculate is reduced. 

I will now wait patiently for me next PSA result a month or so away.

John

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 24 Jun 2019 at 12:51
Things have moved on! I now have heart failure with two leaking valves and an enlarged chamber with atrial fibrillation. I await a cardiologist appointment. I am not sure which ailment to worry about most! Anyway it looks like I won't be dying from Pca, more likely heart failure will get me first!

John

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 24 Jun 2019 at 15:49

Are you fit enough to have replacement valves? 

 

Ido4

User
Posted 24 Jun 2019 at 19:49
I think I am fit enough, I am walking short distances now, up to 1/2 an hour, although I get tired. I will see what the cardiologist is prepared to do. I would go for the replacement valves if offered, I believe they make a very big difference.

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 25 Jun 2019 at 16:49

Hope that works out for you. It will make a big difference no doubt.

All the best,

 

Ido4

User
Posted 09 Jul 2019 at 13:45
Just back from my specialist appointment. PSA is 0.7 so falling nicely. Specialist is happy with that and will see me in 6 months.

I am slowly getting back to normal fitness, ever increasing walks, no dairy, no booze, no sugar, no salt and lots of fruit and veg. I can't say I love my new diet but I am getting used to it.

John

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 09 Jul 2019 at 19:51
Did you have HT as well?
User
Posted 10 Jul 2019 at 21:34
No HT, just 74 Brachy pellets, I asked about HT because I was aware that it could be needed but oncologist said no not required.

John

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 11 Jul 2019 at 06:44
I’m surprised at that because I understood HT gives added mojo to any treatment
User
Posted 11 Jul 2019 at 11:44

Yes, I was a bit surprised as well, now I wonder if I had/am getting the best treatment.

Before I had the brachy I did ask the nurse on here about HT and she said it wasn't always needed.

It's probably too late now, it's 8.5 months since the seeds implant so they will have decayed to quite low levels, I suspect HT would work best whilst the radioactivity was still active.

I have a phone number somewhere for my Macmillan nurse, I think a phone call would be in order.

John 

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 12 Jul 2019 at 15:23

Nurse tells me "Not all patients have HT, it all depends on the Oncologists assessment of each case".

In my case my Testosterone was already low ( I had come off replacement therapy) and my prostate volume was not so big.  Maybe that influenced the decision not to offer HT. Anyway, having read about the side effects I am quite happy not to have had it!

John

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 12 Jul 2019 at 17:23

Could it be because you were " only" a 3+3 so they thought  you were low risk? We know lots of men opt for active surveillance with Gleason 6 since the thinking being it will never become lethal in your lifetime. ( Well maybe if you live to over 100. 😉)

 

Regards

Ann

User
Posted 13 Jul 2019 at 17:37

Yes, initially I was low risk but when my PSA jumped to 10.8 in a few months I was advised that treatment was required.

I suspect ( although it's just my suspicion)  that there was something else other than adenocarcinoma or maybe it was larger than the biopsy indicated. Whatever, with a bit of luck it is in remission now.  

John

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 

 
Forum Jump  
<12
©2019 Prostate Cancer UK