On 5/5/2022 at 2:54 PM, simple1 said:

I have metastatic prostate cancer. I have to use a catheter every night just before I go to sleep. I've got use to the routine, five years now, especially as it means I can usually sleep through the night without being woken due to urine pressure.

I have a question for you, if you wouldn't mind answering it, however if you would like to keep it as a personal response, then please by all means send me a PM.

 

The question is this: – I was instructed by the hospital to use a numbing gel called Xylocaine Jelly 2% when inserting the catheter, and initially I was able to find a few tubes of it around the place, but it has become very scarce of late, so I was wondering if you use this or something similar, and if so where are you able to purchase it?

 

Thanks in advance.
 

39 minutes ago, xylophone said:

I have a question for you, if you wouldn't mind answering it, however if you would like to keep it as a personal response, then please by all means send me a PM.

 

The question is this: – I was instructed by the hospital to use a numbing gel called Xylocaine Jelly 2% when inserting the catheter, and initially I was able to find a few tubes of it around the place, but it has become very scarce of late, so I was wondering if you use this or something similar, and if so where are you able to purchase it?

 

Thanks in advance.
 

Here in Oz my catheter supplier recommends Optilube supplied in a box of 144 x 2.7 sachets for better protection against infection.  Below is a URL for a Thai based supplier.

 

https://www.healthmedic.co.th/catagory/Water-based-lubricant-gel-brand-OPTILUBE-product-from-England/4/en

17 hours ago, simple1 said:

Here in Oz my catheter supplier recommends Optilube supplied in a box of 144 x 2.7 sachets for better protection against infection.  Below is a URL for a Thai based supplier.

 

https://www.healthmedic.co.th/catagory/Water-based-lubricant-gel-brand-OPTILUBE-product-from-England/4/en

Excellent, thank you very much for that information, and one more question please!!

 

Currently I use Xylocaine gel which contains a numbing agent, and the tube (a bit like a tube of toothpaste) has a pointed nozzle on the end of it which enables me to insert that into the end of the old fella and squirt some gel down it before inserting the catheter.

 

I've never tried it without this and I know that the urologist used it when he did a cystoscopy, but I'm wondering if it's really necessary now with a much smaller catheter?

 

So the question is: – how do you use this Optilube? Do you just smear it on the catheter before insertion or does it have a facility to squirt into the penis?

 

It would be a lot more convenient to use this Optilube (not to mention cheaper) and anyway I'm not sure that having this Xylocaine gel pushed down into the urethra and bladder two times a day is particularly good thing, as it is not easily dispersible.

 

I await your feedback with great anticipation, and my sincere thanks again to you.

2 hours ago, xylophone said:

Excellent, thank you very much for that information, and one more question please!!

 

Currently I use Xylocaine gel which contains a numbing agent, and the tube (a bit like a tube of toothpaste) has a pointed nozzle on the end of it which enables me to insert that into the end of the old fella and squirt some gel down it before inserting the catheter.

 

I've never tried it without this and I know that the urologist used it when he did a cystoscopy, but I'm wondering if it's really necessary now with a much smaller catheter?

 

So the question is: – how do you use this Optilube? Do you just smear it on the catheter before insertion or does it have a facility to squirt into the penis?

 

It would be a lot more convenient to use this Optilube (not to mention cheaper) and anyway I'm not sure that having this Xylocaine gel pushed down into the urethra and bladder two times a day is particularly good thing, as it is not easily dispersible.

 

I await your feedback with great anticipation, and my sincere thanks again to you.

The catheter I use is size 14.. With Optilube I just smear it on the end of the catheter before insertion. As mentioned one can order by box of sachets, IMO sachets are better for hygiene purposes as they are single use.

I take my hat off to you guys that can self catherterise,  there is no way on earth I could do it myself, and as Xylophone was doing it 3 times a day .That sounds like he*l on earth to me!!

 

I scream like a baby when I have had them inserted  maybe something to do with the damage that has been done to my urethra, but I am thankful for every day I can get through where I can pee unaided., but I only had my last operation in December, that was my second one at Bumrungrad,  I was previously discharged in February 2021

 

I know that I will have to put up with numerous  procedures for the rest of my life, as the scaring hardens the tube will narrow and I will need to have it operated on. The going rate at Bumrungrad  is around 250,000, so I could well have to pay for this every year or use a catheter all the time.

 

So pleased to here of Xylophone 's progress with the self catherisation , only once  day  you are a very brave man sir  but I suppose you have no choice? As you said it's amazing what the body  and mind us capable of when it's down to survival, what else could you do?

 

Take care everyone

 

12 hours ago, ThaiPauly said:

I take my hat off to you guys that can self catherterise,  there is no way on earth I could do it myself, and as Xylophone was doing it 3 times a day .That sounds like he*l on earth to me!!

 

I scream like a baby when I have had them inserted  maybe something to do with the damage that has been done to my urethra, but I am thankful for every day I can get through where I can pee unaided., but I only had my last operation in December, that was my second one at Bumrungrad,  I was previously discharged in February 2021

 

I know that I will have to put up with numerous  procedures for the rest of my life, as the scaring hardens the tube will narrow and I will need to have it operated on. The going rate at Bumrungrad  is around 250,000, so I could well have to pay for this every year or use a catheter all the time.

 

So pleased to here of Xylophone 's progress with the self catherisation , only once  day  you are a very brave man sir  but I suppose you have no choice? As you said it's amazing what the body  and mind us capable of when it's down to survival, what else could you do?

 

Take care everyone

 

Good to hear from you again TP, and also good to hear that your situation has improved from that of a couple of years ago, when I remember you being in a great deal of pain.

 

Although I can now get by with just one catheter insertion per day (and the occasional urine dribble) I know it's not good for me because at times I drain 800 mL, and that obviously means that the bladder has stretched, which is not a good look. So I should do it more often, but......... 

 

Something which may be of help to you is the use of Xylocaine gel which has a 2% inclusion of a numbing agent, and when squirted down the end of the old fella and left for a few minutes, it numbs the urethra, making catheter insertion a lot easier.

 

I learned a little more about this when I was talking to another poster here @simple1 because I was finding it difficult to obtain Xylocaine, and seemed to be using far too much than I thought was good for me, and of course it can become expensive.

 

He put me onto a sterile gel and gave me the link, for which I was most grateful, however the link opens but I can't get hold of anyone at that company, either through email or telephone, so I wonder if they've gone out of business??

 

However all was not lost because @simple1 mentioned that he only smeared a little bit of the gel on the catheter and all was well, so I thought I would cut back on the amount of Xylocaine gel I was using, which I have done, and it seems to work well.

 

In addition to that I have found a substitute gel on Lazada, called Lidocaine, and it is not as expensive as Xylocaine, and if I order it it will be here in a couple of days, so problem solved (I think).

 

So I'm battling on, fairly pain-free, but not worry free unfortunately, however I have to take my hat off to other posters here, including you, who have posted about their experiences and also given encouragement along the way.

 

Let's hope that you don't have to put up with numerous other procedures in times to come, so good luck to you.
 

Here is something which may be of interest to those folks with prostate problems, and I've lost the link, so here it is in full (I hope the mods allow this because it is extremely good news for those of us with prostate problems).

 

Why 2022 is shaping up to be a breakthrough year for prostate cancer treatment....

A recent Phase III clinical trial conducted by an international consortium of scientists from nine countries demonstrated some of the progress that has been made. It found that a potent new hormone therapy called darolutamide, produced by the pharmaceutical company Bayer, could significantly prolong survival in men with advanced forms of prostate cancer as well as reducing pain, when used in combination with standard therapies.

 

These findings are just the latest breakthrough in the past few months for patients in the latter stages of the disease. In December, a major clinical trial called Stampede found that using two existing prostate cancer drugs in combination – abiraterone and ADT – could increase the six-year survival rate from 69 per cent to 82 per cent. Kemp is also bullish about a new medicine called olaparib, the first drug that is specifically targeted at a subgroup of advanced prostate cancer patients.

 

Aimed at those who have a mutation in the genes BRCA1 and BRCA2, olaparib works by interfering with an enzyme that helps cancer cells repair themselves, inhibiting the ability of tumours to grow and spread. Clinical trials have shown that it can double the average survival time for patients with BRCA mutations.

 

Interest is also growing in another new class of treatments called targeted radionuclide therapies. These drugs attach to tumours before releasing very small amounts of radiation which dissipate within a few hours, meaning that there are far fewer side effects than traditional radiotherapy.

 

"That's the one where when we look at the results, we think, 'Wow'," says Kemp. "You could be sitting here a few weeks away from death, and that will extend your life quite significantly. The pharma company Novartis is currently running a Phase III clinical trial which we're awaiting."

 

There have also been advances for patients who have been recently diagnosed with prostate cancer. A minimally invasive technique called NanoKnife, which uses bursts of quick electrical pulses guided by MRI scans to kill tumours, has been approved for use in the UK's National Health Service. Experts hope that it can help avoid many of the problems associated with conventional surgery.

56 minutes ago, xylophone said:

Here is something which may be of interest to those folks with prostate problems, and I've lost the link, so here it is in full (I hope the mods allow this because it is extremely good news for those of us with prostate problems).

 

Why 2022 is shaping up to be a breakthrough year for prostate cancer treatment....

A recent Phase III clinical trial conducted by an international consortium of scientists from nine countries demonstrated some of the progress that has been made. It found that a potent new hormone therapy called darolutamide, produced by the pharmaceutical company Bayer, could significantly prolong survival in men with advanced forms of prostate cancer as well as reducing pain, when used in combination with standard therapies.

 

These findings are just the latest breakthrough in the past few months for patients in the latter stages of the disease. In December, a major clinical trial called Stampede found that using two existing prostate cancer drugs in combination – abiraterone and ADT – could increase the six-year survival rate from 69 per cent to 82 per cent. Kemp is also bullish about a new medicine called olaparib, the first drug that is specifically targeted at a subgroup of advanced prostate cancer patients.

 

Aimed at those who have a mutation in the genes BRCA1 and BRCA2, olaparib works by interfering with an enzyme that helps cancer cells repair themselves, inhibiting the ability of tumours to grow and spread. Clinical trials have shown that it can double the average survival time for patients with BRCA mutations.

 

Interest is also growing in another new class of treatments called targeted radionuclide therapies. These drugs attach to tumours before releasing very small amounts of radiation which dissipate within a few hours, meaning that there are far fewer side effects than traditional radiotherapy.

 

"That's the one where when we look at the results, we think, 'Wow'," says Kemp. "You could be sitting here a few weeks away from death, and that will extend your life quite significantly. The pharma company Novartis is currently running a Phase III clinical trial which we're awaiting."

 

There have also been advances for patients who have been recently diagnosed with prostate cancer. A minimally invasive technique called NanoKnife, which uses bursts of quick electrical pulses guided by MRI scans to kill tumours, has been approved for use in the UK's National Health Service. Experts hope that it can help avoid many of the problems associated with conventional surgery.

I anticipate I'll require more advanced treatment in the coming few months including radiation, after PMSA-PET scan, as I've come out of remission, so thanks for info. Out of interest I checked the availability / cost of some drugs you mentioned in Oz which hopefully will provide some guidance for cost in Thailand, e.g. info below.

 

darolutamide - https://www.pbs.gov.au/medicine/item/12684N

 

abiraterone - https://www.pbs.gov.au/medicine/item/11206T

On 3/14/2022 at 4:33 PM, BritManToo said:

After 2 years on Finasteride (5mg every other day) along with Nettle root (1/day), I'm almost cured of prostate problems. Really, 1 month or even 2 isn't long enough time to tell if it's working for you. 

It's been 15 months since you offered me that bit of sound advice. Thank you. 

 As a way of avoiding a surgery that I dreaded, I have carried on with taking the Dutasteride. More in hope than expectation but gradually matters have improved.

 I was skeptical that the medication could actually shrink my prostate but after a year I've reached the holy grail of only getting out of bed once a night and that is without having to consciously monitor my intake of liquid during the later part of the day.

 

One thing I have noticed, although it took me a while to realise what was happening, is that my bladder, or prostate perhaps, is severely irritated by MSG. Eating out would be followed with a bad night of maybe 4 or 5 visits to the loo.  

 Thankfully I quite enjoy cooking at home so that is not a hardship for me but on the occasions when we eat out I always ask for MSG to be omitted but with mixed success. For some cooks it is just habitual and others will have marinated their food in it anyway but I will soon know later that night how successful my request was. 

 It's worth bearing in mind though as MSG is used so heavily here.  Omitting it might help some others.