Prostate CA: Sy grows a 'tache and KF grows half a beard

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Re: Prostate CA: Sy grows a 'tache and KF grows half a beard

Postby epipete » Thu 24.12.2015, 07:32

Dave, well done. I am so pleased to hear that you are continuing to wage war and defend your 'trenches' against this dreadful disease, I trust that 'the wall' you refer to is still many miles ahead and that the medics find a way of, maybe, building a bypass around it before you arrive.

I was a little intregued by your comment re abstinance from sex in the week prior to a PSA test, this wasn't mentioned to me when I had mine (a few years ago) and if, indeed, such activity skews the result then I fear most men of this age are going to have 'falsies', could you elaborate on this matter please?

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Re: Prostate CA: Sy grows a 'tache and KF grows half a beard

Postby chris.t » Thu 24.12.2015, 12:15

epipete wrote:I was a little intregued by your comment re abstinance from sex in the week prior to a PSA test, this wasn't mentioned to me when I had mine (a few years ago) and if, indeed, such activity skews the result then I fear most men of this age are going to have 'falsies', could you elaborate on this matter please?

Pete

Hi Pete, Basically both activities can cause a rise in your PSA which would obviously be flagged up as a false positive, something that the PSA test is much maligned for. However the PSA test, despite what some doctors will argue, is the best we've got without taking a biopsy.

In my case the PSA was slightly elevated and it was thought that my regular Spin classes could be irritating my prostate enough to cause the increase in PSA. After abstinence from Spin and no reduction in PSA a biopsy was performed which confirmed that I did in fact have cancer. At the moment it's in remission thankfully due in the main to it being caught early. I've got anther few years before I will be considered cured.

So, to back up what Dave has urged you to do, if you're approaching the big 50 or have got peeing problems then make it a new years resolution to get regularly checked out because early diagnosis is a life saver!

All the best, Chris
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Re: Prostate CA: Sy grows a 'tache and KF grows half a beard

Postby epipete » Thu 24.12.2015, 14:34

Thanks for that Chris, very useful to know.

A close friend of mine has just been diagnosed, accidentally as it happens, he was at the doc for some unrelated issue and because of his age the GP (obviously an enlightened man) suggested they'd get his PSA measured, he agreed considering it a no brainer and was very surprised to find that the resulting and subsequent tests have proved positive, albeit, happily (if such a phrase can be used) his Gleeson is on the very first rung of the ladder and so they are merely watching and regularly testing at present.

It has, again, alerted me to the need to keep on top of the situation and I draw pleasure to know that in his case, yours and, indeed, Dave's that progress is being made.

A happy Christmas and new year to you both.

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Re: Prostate CA: Sy grows a 'tache and KF grows half a beard

Postby Stef » Sat 20.02.2016, 13:48

There is no official thread open but extremely saddened to see the banner news on Simon V :cry:

He was a rock for LEC and a genuinely lovely, caring and welcoming chap whom I shall miss greatly. Legend lives on in my fond memories.

Condolences to those close to him x
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Re: Prostate CA: Sy grows a 'tache and KF grows half a beard

Postby theelanman » Sat 20.02.2016, 14:47

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Re: Prostate CA: Sy grows a 'tache and KF grows half a beard

Postby DaveT » Sun 29.01.2017, 14:34

Life's a bitch

Despite original prognosis that 2012 would be my last I'm still here 2017. Much thanks to Enzalutamide which came on the market in 2014 and Maxine for her support.

I had that for 18 months when the average is 7-8. At £3000 per month. Treatment is terminated when the PCa becomes resistant to the drug. Resistance not the right word but that is the one they use.

Then had a fight to get a Docetaxel [chemo] re-challenge in 2016. [I'd already had it in 2013/14.

That has just finished and now I have to wait for my PSA to rise [usually within a couple of weeks]. Without treatment I'll probably not see the year out. With treatment I might manage a bit more time. Basically they're running out of options. Next option would be Cabazitaxel but due to lung damage I've been advised not to have it. That leaves SFA.

Or does it? Option would be another round of Enzalutamide but because NICE/Cancer drugs fund will only fund one round I'm stuffed- unless I pay privately!!! FFS. Apparently there is no evidence it will work again, despite re-challenge of Docetaxel, but conversely there is no evidence it wont. But if I pay privately I can get the drug, but then I'm stuffed as they insist all future treatments have to be private as well. They can only recommend it privately cos the NHS won't pay for it???? If it could work privately it could possibly work if the NHS pay for it?

Apparently all NICE advise is based on the majority [most PCa patients over 70] We're all tarred with the one brush and it looks like they allocated a set amount per patient. I have had more than my share apparently and must face what lies ahead without complaint. I deserve better than that having given 30yrs of my life to the NHS. Maxine deserves better than that for the care she has given me since 2009.

Rant over
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Re: Prostate CA: Sy grows a 'tache and KF grows half a beard

Postby tigerdog » Sun 29.01.2017, 14:56

Well, that sucks. I know, neither prosaic words nor profound, but it's all I can muster after reading your last post. You describe a conundrum no one should ever have to face. If it helps, you're welcome to rant here any time, Dave. You'll find sympathetic ears.
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Re: Prostate CA: Sy grows a 'tache and KF grows half a beard

Postby dapinky » Sun 29.01.2017, 16:18

Dave,

Whilst it's (obviously!) great that you're still here to write the above, it's a ba$tard that options are being limited by the ever-strugling NHS bean-counters....

...is there any possibility of travelling abroad for the next course of medication so the NHS doesn't know that you've 'gone private' or isn't that an option?

Perhaps change your name to something arabic and claim it is presecution that you aren't given the stuff you require???

Whatever happens, keep yer chin up, and feel free to rant as you wish. :cheers:
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Re: Prostate CA: Sy grows a 'tache and KF grows half a beard

Postby Artaban » Sun 29.01.2017, 16:20

Dave, that is truly bad news. I could rant on myself about waste within the NHS that denies treatment to cancer patients as most of my family work in it in a medical rather than administrative capacity. Obviously you will pursue every avenue including drug trials (my brother has prostate cancer) and I am sure that I speak for all on here in wishing that you get full and proper treatment somehow despite the current uselessness of NICE. The cancer charities are asking for the role of NICE to be reviewed in the light of its failings but I fear such reviews are too slow and ponderous. Do keep us up to date if for no other reason than to vent your frustration of the system. Make sure that you've got some good things to look forward to to keep your spirits up. Wishing you all the best.
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Re: Prostate CA: Sy grows a 'tache and KF grows half a beard

Postby Giniw » Mon 30.01.2017, 20:25

Hello,
Although I am not sure of the details and I don't want to give you false hopes, I just remembered a piece of news I read a while ago about a French law which apparently states that strangers will have access to a treatment if it's not available in his country OR if it's too expensive for him.
Here is something about it (in French):
http://www.francetvinfo.fr/sante/patien ... 09883.html
Maybe this could be something to investigate?
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Re: Prostate CA: Sy grows a 'tache and KF grows half a beard

Postby DaveT » Mon 30.01.2017, 21:47

Thanx for the input folks.
Hi Pinks- bit fragile at the moment so travel too far may be a struggle. Hope for some improvement now chemo has stopped.

Giniw- thanx for that article. very interesting. If I can get more mobile I'll see if that is an option in a month or so.

A villa on the Med for a few months sounds like a good idea. Warm the bones and get some treatment.

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Re: Prostate CA: Sy grows a 'tache and KF grows half a beard

Postby Steve A » Mon 30.01.2017, 22:35

Glad to see your still with us Dave but sorry to hear how the system sucks, it's not so NICE :roll:
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Re: Prostate CA: Sy grows a 'tache and KF grows half a beard

Postby HJ2 » Tue 31.01.2017, 14:12

I just can't believe how money driven the health care system(s) are sometimes.
Makes me really :evil: :smt097
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Re: Prostate CA: Sy grows a 'tache and KF grows half a beard

Postby epipete » Wed 01.02.2017, 22:08

Keep ranting Dave.

It stretches all credulity that any drug can cost £3k per month.
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Re: Prostate CA: Sy grows a 'tache and KF grows half a beard

Postby DaveT » Thu 16.02.2017, 15:36

It's now official-

You're fu**ked. Stick your head between your legs and kiss your ass goodbye. [No smilie for that one. Can I request a new smilie?] Cos were not doing anymore for you.

Thanx for F**k all.

Fu**ing N.I.C.E

:banghead: :banghead: :banghead: :banghead:

To infinity and beyond
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Re: Prostate CA: Sy grows a 'tache and KF grows half a beard

Postby GeoffSmith » Thu 16.02.2017, 16:29

Here's to hoping you prove the bastards wrong once again Davey boy and looking forward the seeing you in 2018.

In the meantime, don't try this at home.

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Re: Prostate CA: Sy grows a 'tache and KF grows half a beard

Postby dapinky » Thu 16.02.2017, 18:13

In no way am I making light of your shitty situation, and we are all supporting you.....

..... if only Geoffs picture were possible, there may well be far less similar situations in the future as things may get caught earlier.
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Re: Prostate CA: Sy grows a 'tache and KF grows half a beard

Postby Bolsom » Wed 21.06.2017, 14:00

Hi,
Just read this thread. Saw Giniw's comment.
Living in France and having had a bad cancer i can say that the service here is second to none.
I was mis-diagnosed several times but once the top man in Toulouse examined me and said
'You have six months' - talk about putting it gently - The treatment was superb and I was just signed off after 10 years.
Along the way I had a lot of very expensive treatment - including three weeks in a private room after the Op.
I think it is worth a try. I was at the doctors this week and an English holiday maker was seen without any problem.
I was there for a prostate check! I had a rebore (prostate) a few years ago and was able to watch on a TV screen
as they did it. Very interesting!
Good luck Dave!

Colin
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Re: Prostate CA: Sy grows a 'tache and KF grows half a beard

Postby TrevorB » Wed 27.09.2017, 17:33

Some of you that attended Brand's this year were aware that I was having a biopsy taken of my prostate after mri found small shadow. I am pleased to report that the result was clear. Have to repeat psa blood test in 6 months. Can't emphasise enough how important the psa blood test is for gentlemen of a certain age.
:cheers:
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Re: Prostate CA: Sy grows a 'tache and KF grows half a beard

Postby alan e » Wed 27.09.2017, 18:20

:agree: Trevor very good news, long my it be that way.
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