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Posted 2/15/2010 11:28 PM (GMT 0)
Hi to everyone,

I only just discovered this site via google and had to register immediately.

64 years old

Very fit......weights and running.

Diagnosed May 2009 after biopsy following a jump in PSA from 4.5 to 8.7 in 5 months.

Gleeson of 7.7

Prostatectomy July 2009

PSA 0.12 in October 2009

Radiation treatment from 6 December 2009 to 23 January 2010.

PSA now 0.17

I never had symptoms and my doc says not to worry and the PSA will come down, but I dunno. Oncologist gave me a 50% chance of another malignancy within 5 years if I had the radio, 75% without it...not much choice. All my bone scans etc are still clear, but I feel a little, well, doomed, caught up in a process that will kill me as it killed my father in 2003.

My philosophy now is simply to ignore it all as much as possible and live as if it wasn't an issue, but as I'm sure others know.....it's the first thing I think of when I awake and the last thing at night.

Living in a small country town in the Australian bush, there isn't much in the way of support, though prostate cancer has killed quite a few here in the last year and I know of four others in my situation.

I have made a good recovery physically, being fully continent within 3 weeks of the initial surgery, but ED is an issue.

The uro recommended caverjet injections initially, but they worked only 1/4 of the time and always involved a lot of pain afterwards. Viagra initially failed completely, but came a little better after a course of 8 and I'm now starting a course of cialis.

I was wondering about a radical prosthesis if the cialis fails as sexual activity is very important to my younger wife and I, and would welcome any comments or recommendations from others.

Thanks for listening.

 

Posted 2/15/2010 11:36 PM (GMT 0)
Welcome buddy happy that you have found a place to bounce things on. Sounds like you are making a good recovery at this point. Did your Dr advise the use of Tri-Mix sence the caverject was painful?

Do keep us posted.

Jeff T
Cajun Country
Posted 2/15/2010 11:39 PM (GMT 0)
Welcome to HW, sorry you have to be here, glad you came. Well, your sense of isolation is over, as we got guys from around the world ready and able to help in any way we can.
Posted 2/15/2010 11:39 PM (GMT 0)
Thanks Jeff, no, I never heard of Tri-Mix and will follow up on that.
Posted 2/16/2010 1:18 AM (GMT 0)
Hello Aussie, glad to have you. We have some others from down under here as well. Feel free to ask anything you wish, or if you need to vent , that's ok with us tool.

David in S.C.
Posted 2/16/2010 1:29 AM (GMT 0)
Well another bloke from Oz.
I am from the Illawarra region myself. It may take a little longer to see if the salvage radiotherapy has done its job and the future PSA will show that. keep on top of it and be proactive re. your treatment. A couple of tips. Get from your urologist that did the op the full post surgery pathology report. It will contain a lot of details the urologist may not have told you or you did not take in at the time. Keep a written copy of all pathology tests you get ----------------- it helps any future consultations and saves having to remember little details.
Sometimes the Caverjet can cause pain (apart from to the pocket) but I believe it is an automix and delivery method of trimix (the drug alprostadil is what usually causes the problem). But with compounded trimix the combinations of the drug can be altered (to the point of vitually becoming a bimix) to help eliminate any discomfort. This is a thread from some time back discussing it here:
https://www.healingwell.com/community/default.aspx?f=35&m=992063
"JamesC" has a good deal of knowledge with the various combinations and doses.
You need access to a compounding pharmacy to mix the drug for you so I don't know how you'll fare in a country town.
On the other hand many members (including quite a few from Oz) get their Cialis or Levitra or Viagra from

http://alldaychemist.com

(although they are based in India they have a very good reputation among the members here regarding delivery and efficacy of their generics)(when using their search facility you need to enter the official drug name e.g Tadalafil, Vardenafil, Sildenafil Citrate). At a cost of about 60c a pill let the good times (if possible) roll. There is no problem with customs in Australia (I and a few other Australians have ordered multiple times...............they come straight through without query in a sealed and plain package)
Take care and good health,
Bill

Posted 2/16/2010 1:43 AM (GMT 0)
Welcome Aussie,

Like you I am a runner and lift weights, canoe, Mtn Bike, you name an outdoor activity and I like it. But also like you I have had a reoccurance of cancer and am in my 5th week of IMRT. At times that "gloom and doom" thinking hits me, but it only takes away from what I am guaranteed, and that is "now." Not sure how long I will live, but I never have known for sure. For me it learning how to live to the fullest and to make the most of what I have and to think of my legacy, which I will leave for my grandchildren. Hope you keep running and enjoying life and thanks for posting.

Michael

Posted 2/16/2010 1:46 AM (GMT 0)
If the caverject gave you troubles, you could try bimix - it does the same thing but without using the active ingredient in caverject (alprostadil). As mentioned already, it is trimix minus the alprostadil. Works for me fine.

I feel for you, Aussie Bloke, I'm going through some of the same deliberations. I see the doc tomorrow about what to do about recurring PSA.
Jeff
Posted 2/16/2010 4:20 AM (GMT 0)
Thanks for all your replies, guys. BillyMac, I live in Glen Innes, Northern Tablelands, NSW deep in God's Country.

Post Edited (Aussie Bloke) : 2/15/2010 10:17:38 PM (GMT-7)

Posted 6/1/2010 5:28 AM (GMT 0)
Hi guys, been a while and I've had a few ups and downs.

My psa was 0.13 in April, so it's trending down...slowly.

Had a crapload of problems with my waterworks that have only now been sorted. Rushed to casualty twice with totally blocked urethra...scarring from the SRT. Had a super-pubic catheter for a month then a normal one for another week after a endoscopy procedure to free my urethra. Glad to say my pee nows free for the first time in months but my lower abdomen looks like a battlefield record.

Anyway, on the ED front I've given up on pumps, drugs and injections...none worked, except a soft full-sized erection that was lovely to see but doomed to uselessness. sad

I have an appointment with a surgeon on 7 June in Port Macquarie to begin the implant process...really looking forward to getting a bionic prick.  cool   The guys on Franktalk have convinced me from reading the posts on implants.

Not worrying about the cancer anymore, gonna try to enjoy a "normal" life, including a sex life. Not having another PSA test until September, on the advice of my GP.

 

Posted 6/1/2010 1:03 PM (GMT 0)
Thanks for the update Aussie, and we each have to do what we feel is right for us regardless of what might have worked for others. Just keep an open mind and we wish you nothing but the best. Hope that you are still able to excercise and workout as well. Enjoy life.

Michael

 

Posted 6/1/2010 1:20 PM (GMT 0)
Hi Aussie, thanks for coming back and giving us an update. I hope you'll continue to drop in from time to time and report on your bionic 'parts.' I wish you every success.

Sheldon AKA Sleepless
Posted 6/9/2010 12:38 AM (GMT 0)
Well, saw Mr Prem Rashid in Port Macquarie on Monday and am due for the surgery on 30 June 2010.

Prem was really reassuring, does a lot of these procedures and gave me swags of hope for the future.

Will keep you all posted.

Posted 6/9/2010 2:28 AM (GMT 0)
Hello Bloke,

Good luck on the implant surgery, sounds like a big step, hope that works out well for you.

I know all about the suprapubic cath bit, I am approaching my 9th month on one, I already had a bad problem with closures and strictures before radiation, and now the radiation has made things worse. Still working out a solution.

Let us know how things go with you.

David in South Carolina
Posted 6/9/2010 4:47 AM (GMT 0)
Hi David, I sympathise greatly about the suprapubic catheter. Most painful and uncomfortable procedure even just for a month, never mind 9 months.

My surgeon regards the penile prosthesis as in the same class as a hip or knee implant...fairly straightforward (though tricky sometimes) and the big issue is the prevention of infection. I am convinced it's the right thing, specially as he agrees that what you have in the ED dept after a year is you're ever gonna get for most blokes after surgery and radiation...double whammy.

Good luck mate.

Colin.
Posted 6/9/2010 3:22 PM (GMT 0)
Colin, I understand completely your desire for the implant, with some men, unfortunately, there is no other fix for long term or perm ED. I was on the other end of the spectrum, despite the cath problems I have, I was in the fortunate few club, where I have experienced no ED, none what so ever, not after surgery, not after radiation (so far), and my left nerve bundle was saved, and the right side was left in place and noted as damaged. Even my own doctor says it makes no sense, but again, each human body has it owns quirks and miracles.

The infection aspect would concen me if I were doing what you are, but your doctor should be able to keep a good handle on that issue.

Good luck again, friend.

David in SC
Posted 6/9/2010 3:33 PM (GMT 0)
Best of luck Aussie. Very glad to hear that the PSA is trending down, particularly because it allows you to sensibly hold off the next test until Sept and take a break (hopefully) from the stress that the testing induces.
Posted 6/25/2010 1:10 AM (GMT 0)
Well, I know that I said I wouldn't be having another PSA until September, but the surgeon due to install my implant on 30 June requested one and I just couldn't resist checking with my GP as to the result. It's the same as before at 0.13, and I don't know what to make of it.

Anyway implant next Wednesday and into the future.
Posted 6/25/2010 2:29 AM (GMT 0)
Bloke,

Good luck on the implant surgery. Hope that goes well for you, and that you have a decent recovery.

David in SC
Posted 7/5/2010 6:03 AM (GMT 0)
Hi everyone. Just finished driving home after the surgery on 30 June 2010. Everything OK but massive pain issues now diminishing. I will post an update tomorrow when I have got myself together.

First news is however...It's a winner...had my first hard-on in a year in a painful situation (accidental activation by nurse). But it was a real woody and it was turned off only as being not conducive to the healing process. My penis even slack is a little bigger than it used to be.

Colin
Posted 7/6/2010 1:24 AM (GMT 0)
You are not doomed to this disease, keep exercising, stay positive, live with hope, thats all any of us have cancer or not. And quite frankly I think thats enough. I mean if you want to look at it that way, we're all doomed arn't we, cancer or not.
Posted 7/6/2010 2:35 AM (GMT 0)
colin,

accidental or not, that must have been a real good surprise having "wood", should give you hope and encouragement for how things might be once your device is officially activated. should be some good times for you ahead.

good luck, and recover well from it.

david in sc
Posted 8/16/2010 11:47 PM (GMT 0)
Hi fellas, another update on my situation.

I'm now just over 6 weeks from the implant procedure, and it's been a bit of a wild ride. Things were going OK until after 3 weeks, the stitches in my scrotum dissolved and the wound just opened up completely...found myself sitting in a pool of blood and freaked out totally.

Well, I covered the wound as best I could and got to the doc immediately. He swabbed and sterilised and replaced the stitches and by some miracle I avoided infection, still taking massive antibiotic doses every day. The stitches were removed after a couple of weeks and the wound has healed from the bottom and is now almost closed. There is no infection or pain and I have clearance from my surgeon to commence sexual intercourse as soon as the wound has been completely closed for one week.

I'm inflating the implant each day, and ten pumps gets me about 90% full erection...very rigid and certainly usable. It will apparently get better with more and more use. My wife and I are very happy with things right now.

My next psa test will be in December.

Posted 8/16/2010 11:50 PM (GMT 0)
Forgot to mention...back into the gym as of yesterday and am amazed how much strength and endurance I've lost in only 6 weeks. I'll soon get it back.
Posted 12/15/2010 10:26 PM (GMT 0)
I had another PSA last week and it's down to 0.08 from 0.13 in June. It looks like a good trend.

As an experiment I have been taking zeolite since October at the recommendation of a friend of mine also in the PCa Club. It is expensive stuff shipped from the States but my doctor said it has a history of reducing or even eliminating some tumours so I have been taking 15 drops every 6 hours since October. This is zeolite that has been reduced to less than .05 microns and permiates the blood vessels from the gut. There are cheaper versions that cannot permiate the gut walls and are less effective.

Now I dunno whether my improvement is due to this stuff or would have happened anyway, but I am continuing to take it.

 

Post Edited (Aussie Bloke) : 12/15/2010 3:53:18 PM (GMT-7)

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