Medical Forum / Diseases and Disorders / Prostate Cancer / July 2004
Starting to Sweat now !
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Canada Bob - 26 Jul 2004 14:47 GMT Well I didn't get the HIFU treatment that I should have had in the first week of July {due to the calcium build up in my prostate}, so I had to put Plan B into action {Cryo}.
The availability in the UK is {shall we say} limited, and it looks now that I'll have to wait it out {for that read sweat it out} until the first week of October.
I'm taking Celebrex {FWIW} 800mg a day, hoping that will stave off the progression, but now that I find that I have 2 months or so to wait I'm wondering if I should be on something more aggressive {thinking something to knock the testosterone down} during the next couple of months.
I'd appreciate ANY thoughts,comments or experiences on this.
Canada Bob {sweating it out now in Nova Scotia}.
DX'ed 10 weeks ago with... PSA 4.6 Gleason 3+4 Biopsy of 6 out of 6 {both lobes} with 30% cancer in each one, sigh.
Jamie - 26 Jul 2004 21:24 GMT There was a post in this group a few months ago, suggesting the Royal Surrey Hospital in Guildford was good for salvage cryo. I would think it might be well worth trying them or at least get your GP to refer you.
Jamie
> Well I didn't get the HIFU treatment that I should have had in the > first week of July {due to the calcium build up in my prostate}, so I [quoted text clipped - 18 lines] > Gleason 3+4 > Biopsy of 6 out of 6 {both lobes} with 30% cancer in each one, sigh. Canada Bob - 27 Jul 2004 04:45 GMT Hi Jamie, Alan & Dale,
First of all THANKS for your feedback, comments and support...
> There was a post in this group a few months ago, suggesting the Royal Surrey > Hospital in Guildford was good for salvage cryo. I would think it might be > well worth trying them or at least get your GP to refer you. Without a doubt Royal Surrey is well up there in the UK but I saw Dr Damien Greene who works out of Newcastle and Sunderland Hospitals {in the NE of England}. He has significant expertise in Cryo in the UK and I believe he has treated more patients than anyone in the UK, to add to that he's a real nice bloke to chat to, and spends much of his time teaching this Cryo treatment to other Dr's across the UK, so I'm confident of the mans skills and ability.
My main concern is that some 3 weeks ago he told me that it was likely that I would be treated early in September, now that's been rolled back to October, add to that the fact that I was DX'ed around 10 weeks ago, and that Plan A {HIFU} didn't pan out for me {due to the calcification thing}, I'm getting really anxious about the ticking that this little time bomb is doing inside of me.
I was a bit surprised when his office simply advised me of the later date, and didn't mention anything that I should be/could be doing in the meantime.
Maybe Dr Greene {with his expertise} doesn't see or feel the anxiety or need for the urgency that I feel, and if that's based on his knowledge then I would feel fine banking {my life} on that {almost}.
Being concerned {to put it lightly} I contacted his office and asked "what options might help" in the couple of months I have now to wait, and they came back with the suggestion of 150mg of Casodex a day.
Maybe {and hopefully} this option was given to me simply to calm my jangling nerves ? maybe the time frame isn't of great urgency ? maybe I'm OK without the Casodex ? but it's a hell of a bet to get wrong, so...
What's with this Casodex stuff ? what's the pros and cons of it ? I don't want to turn into Dolly Parton overnight {sigh} but right now being Dolly Parton beats being Elvis Presley to me, at least as far as body temperature is concerned...
Looks like Casodex isn't a problem for the Cryo treatment, so no worries there, and I don't think that Casodex gives a rush to testosterone that I've heard Lupron does.
Other than all this, Alan I appreciate your comments, but I can't speed things up, Dr Greene is doing his best and is serving patients both privately and some done through the NHS system, so I'm stuck like the rest of the poor sods, sweating it out waiting to have me vitals frozen off...
Dale... much appreciate your support, maybe the worries I have are {slightly} out of proportion to my condition, maybe the knowledge/experience of Dr Greene gives a better insight to where I'm at {statistically}, but it sure as hell don't stop me sweating this one out.
Should I start gulping down the Casodex or not ? THAT is the question !
Canada Bob, aka Wigin Bob, depending on which side of the pond I find myself on.
Steve Kramer - 27 Jul 2004 11:23 GMT Bob,
Early on, when I realized you were going to wait in order to get your unconventional treatment, I suggested you consider Lupron or some other HT, just to arrest the cancer. Well, that's what Casodex is - HT.
There are several and each works on a different part of the transaction between making testosterone, melding testosterone with and enzyme making it a super testosterone, and allowing that to merge with androgen... and all the other necessary steps for prostate cancer. Lupron works on the body creating testosterone. I forget at which point Casodex works in the process, but the end result is basically the same.
You may experience hot flashes. I doubt you will experience much of anything else during the 10-week wait.
Most importantly, your cancer will not grow.
 Signature Prostate Cancer Survivor (so far), not a doctor PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 PSA .1 .1 .1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Erection 05/12/2003 @ 48 HTbegins 07/21/2003 @ 48 PSA .07 .05 Lupron 7/03, 8/03, 12/03, 4/04 non illegitimi carborundum
> Hi Jamie, Alan & Dale, > [quoted text clipped - 64 lines] > Canada Bob, > aka Wigin Bob, depending on which side of the pond I find myself on. Alan Meyer - 26 Jul 2004 21:44 GMT > ... > The availability in the UK is {shall we say} limited, and it looks now [quoted text clipped - 5 lines] > Gleason 3+4 > Biopsy of 6 out of 6 {both lobes} with 30% cancer in each one, sigh. Bob,
Given your "intermediate risk" Gleason score, and the fact that the biopsy hit 6 out of 6, is there any chance you can lean on the health service to get faster treatment?
Also, as you suggested, I would inquire about hormone therapy. It is my understanding that HT is often used with radiation and only rarely with surgery. I don't know whether it helps or hurts cryogenic treatment. Perhaps you could call the center that does the cryo treatments and ask them. If HT is acceptable to them, you can probably get it immediately. All it requires is a prescription for pills and an injection. Any doctor can write the prescription and a nurse can administer the injection. There is no waiting to schedule time in an operating theater or with a specialist.
Good luck,
Alan
dale.j. - 26 Jul 2004 22:30 GMT > Well I didn't get the HIFU treatment that I should have had in the > first week of July {due to the calcium build up in my prostate}, so I [quoted text clipped - 18 lines] > Gleason 3+4 > Biopsy of 6 out of 6 {both lobes} with 30% cancer in each one, sigh. I think missed your initial posting so I hope I'm on the right track here.
To give you a little point of reference, I was referred to a Urologist in May or June of 2002 by my GP due to elevated PSA. Over the course of the summer I had a couple more PSAs plus a PSA II or Free PSA. The Uro recommended and I agreed that I should have a biopsy. It was scheduled for around Sept 8. In the course of time I was bumped out because of a higher priority patient. The only time they had was on a Friday which was a no go for me. So they scheduled it for the first part of Oct. Anyway to make a long story short from the first time I seen my Uro til I had the operation on Dec 2, 02 was about 6 months. I wouldent worry too much about a few months. I'm not a doctor just a patient, but it seems there is no huge time factor, unless your doc tells you different. You should ask the question....how urgent is this?
Anyway here's wishing you good luck
Dale J.
 Signature Email: dalej2@mac.com
Canada Bob - 27 Jul 2004 03:06 GMT Me again...
Just been advised that Casodex 150's a day might help ?
I'd appreciate the pros and cons on that, or alternatives...
Canada Bob.
pbh1@comcast.net - 27 Jul 2004 06:04 GMT CBob--
Following is the meat of something I posted a few weeks ago, with the usual caveat that I'm no doctor . . .
Casodex 150 has been shown in a study not effective--and perhaps slightly counterproductive--for the treatment of localized PCa either as an initial therapy prior to radiation or surgery, or as an adjunct to watchful waiting. See this link: http://www.info.doh.gov.uk/doh/embroadcast.nsf/vwDiscussionAll/. Click on the 28/10/03 topic re Casodex.
A study apparently suggested that use of Casodex 150 slightly increased death rates. Key excerpt from an October 2003 official-looking UK medical advisory from the chairman of the committee on the safety of medicines:
"CASODEX 150 MG (BICALUTAMIDE): NO LONGER INDICATED FOR TREATMENT OF LOCALISED PROSTATE CANCER
"I am writing to inform you that following review of new clinical trial data, Casodex 150mg (bicalutamide) is no longer licensed for the treatment of localised prostate cancer. "Localised" is considered to be a relatively small tumour, with no tumour spread outside the prostate gland.
"New Data "Recent results from a study of Casodex (bicalutamide) in early prostate cancer have shown that in patients with localised prostate cancer who would otherwise have been managed only by watchful waiting, there is a trend for an increase in the number of deaths in patients receiving Casodex 150mg when compared with patients who received placebo [196 (25.2%) deaths versus 174 (20.5%) deaths, hazard ratio (HR) =1.23, 95% confidence interval 1.00 - 1.50]. This analysis is at median follow-up of over 5 years. (Watchful waiting is where the patient is monitored and treatment is only started when there are signs that the disease is getting worse.)
"Committee on Safety of Medicines (CSM) advice CSM has advised that the balance of risk to benefit in patients with localised prostate cancer is unfavourable. Consequently, Casodex 150mg should not be used for the treatment of these patients.
"Casodex 150mg is also used in patients with locally advanced prostate cancer, as immediate therapy either alone or as adjuvant to treatment by radical prostatectomy or radiotherapy (locally advanced is considered to be a larger tumour or tumours with spread to lymph nodes, but not involving spread to other organs). CSM advised that the overall risk benefit remained positive in this group, however they concluded that for some patients at lower risk of disease progression in this group who are also receiving surgery or radiotherapy, Casodex therapy might not be suitable as an initial therapy."
If a doctor suggested Casodex 150mg as a pre-cryotherapy treatment it would make sense to show him this UK medical advisory.
Good luck!
Paul
> Me again... > [quoted text clipped - 3 lines] > > Canada Bob.
 Signature "Knowing that one will be hanged in a fortnight wonderfully concentrates the mind." Samuel Johnson
Canada Bob - 27 Jul 2004 15:08 GMT Hello Paul...
> If a doctor suggested Casodex 150mg as a pre-cryotherapy treatment it would > make sense to show him this UK medical advisory. I very much appreciate your time and considerations Paul, Thank God you took the time to advise me of the UK report, I won't be taking the Dolly Parton treatment. Cor Blimey it really does make you sweat when folks who have your life in their hands don't seem to be aware of reports like this.
> Good luck! Looks like I'll need it, where the hell would we all be without support groups like this !
Canada {aka Wigin} Bob.
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