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Re: SIGNS THAT LUPRON IS LEAVING

Patrick,
I am 10 weeks out from my second and last Lupron shot as well. I still have a few weeks of Casodex to go and I'm anxious to get back to normal. I can already get a partial erection with the help of Levitra. I would expect that your skin would start to return to normal (not as dry) and the flashes would begin to subside. Hopefully you'd get back some energy as well. I think it will be easy to spot if it's not too gradual.

I see you're right next door. I'll be out on the Cape in a week's time.

Paul A. RI USA

Re: SIGNS THAT LUPRON IS LEAVING

I am 4 months from my last 3 month Lupron Depot shot to hip. My testosterone is still way down. Have had three erections, one dream, two for real, both abit painful, no amorous feelings, but the second one worked, no drugs. Like my wife & I got to learn it all over again.

Re: SIGNS THAT LUPRON IS LEAVING

Hi Patrick,

It took a year after my final 3 monthly injection to see my testosterone back to a good, normal level. But for 38 weeks of that year I was on Casodex 150, so the rise was very gradual. With no meds at all it may return to normal more quickly.

However, it took longer for my tiredness to lift. Luckliy I never suffered hot flashes during my time on HT. That is probably down to my following the Jane Plant diet.

Don't worry, you will get back to the 'good ole times', I'm sure.


Very Best Wishes,

George

Re: SIGNS THAT LUPRON IS LEAVING

One of the interesting things that I've come across is that the manufacturers of Lupron, Zoledex, etal. have received approval from the FDA for the use of their drugs exclusively for pallitive treatment of advanced PCa. Since I do not fit that criterium, the drug has been administered at my physicians discretion. So what does this mean? The manufacturers are not required by regulation to do any testing or long term studies on these drugs when prescribed in a case such as mine (those that are not strictly pallative). Studies such as these must be financed with grants from government or charitable organizations. Since the time span is so great for PCa research, not too many of these organizations are willing to foot the extreme costs associated with testing. As I come to the end of my Lupron therapy, I find myself frustrated at the lack of information on what to expect next. If I had it to do over - I would still opt for the Lupron therapy as my PSA has remained undetectable since Mar 07 and I believe that is a good sign. It would be nice though to have up to date literature available for people like me. - Pat Priestley (Alaska, USA)

Re: SIGNS THAT LUPRON IS LEAVING

You're right Patrick and we already have a thread on here questioning this apparently new prostate cancer treatment plan (32.9 by Ally).

One of my major decisions upon completing radiation treatment was how long to continue receiving Lupron monthly injections. The radiation oncologist said six more months. The surgeon assisting with the seed implant said two years and my Urologist (who also assisted in the seed implant) said I could stop them anytime I wanted after the last radiation session.

I couldn't find much material on long term usage so I stopped them immediately.

Re: SIGNS THAT LUPRON IS LEAVING - FDA approval and all

Pat,

The fact of the matter is that NONE of the current treatment options for prostate cancer, from surgery to HIFU, have any sound long term studies in the USA that demonstrate their efficacy or otherwise. It is a scandal and should be completely unacceptable. The only long term studies available are those done in European countries and their results are far from clear.

But back to the FDA and their approval. I am always a bit wary about discussing the FDA since some time back I tried to join in a discussion and was told to but out – as an alien I had no right to comment (especially if it was critical comment) on a US institution. But I reckon I might be fairly safe here, since this is my own pulpit, so to speak [grin].

As I understand it, the prime function of the FDA is not to confirm or deny that a proposed treatment or drug actually works, but that it does no harm (or, perhaps, less harm than it saves). So, if we take the position with CYBERKNIFE® as an example, the FDA approved this procedure for the treatment of tumours based on studies showing that it could treat brain tumours effectively with no side effects more harmful than normal radiation. The manufacturers and users of CyberKnife® then started using the technique on other tumours, including prostate tumours. BUT there is a substantial difference between the way in which a brain tumour can be immobilised – basically if the skull is immobilised, then so is the brain – and a prostate which can move quite considerably. The result is that the treatment of prostate tumours by this method is still labelled “experimental” and as a result some insurers will not pay for the treatment while others will.

Many of the drugs used in prostate cancer work are used ‘off label’ as the terminology has it. In other words for treatment for which there were no studies when it was approved by the FDA. A prime example is Casodex 150. In this specific case, the FDA declined to approve the dosage on the grounds of potential harm (although this dosage is used elsewhere in the world). The approved dose is Casodex 75. Because some medical people feel that the 150 dose is better than the 75 they prescribe 2 x 75 doses, this keeping within the law! Other drugs, like thalidomide are being used in an experimental way. Good short term results are reported, but who knows that the long term will be. Doctors mix and change combinations, most of it based on guesswork, or short term studies, or personal views, or what they have learned anecdotally from other doctors or their own patients. Not good enough, but…..that’s the way it is.

All the best

Terry, the alien in Australia (where things are done in a very similar way)

Re: Re: SIGNS THAT LUPRON IS LEAVING - FDA approval and all

Terry,
As an aside to your comment on Lupron Depot. My education was as a Nuclear Engineer, and I did a lot of studies in radiation physics & health physics. It is my opinion that the doses given during EBRT are not what is needed to kill prostate cancer, but are the maximum doses that will not kill good, healthy cells. Hence, the reason the EBRT treatment dose continues to rise as more experimental data is accumulated. Toward the end of the 3rd week of my pelvic cavity rd tx, I was experiencing a clear mucus discharge, with my BM's. When I told the oncologist that my colon & rectum were being dosed, he at first said no, but then said yes, but not much. I think that the colon dose was larger than he knew. I had done some reading of victims of atomic blasts and when they died with in 30 days, it was because the colon had received sufficient dose to stop digesting food, and a resulting discharge of heavy clear mucus.

Re: SIGNS THAT LUPRON IS LEAVING

Hi Terry,

That's a very interesting reply, albeit from an 'alien' : ) I too have found it very difficult to find results of long term studies on the effects of Zoladex/Lupron, and many other treatments.

And, like many others, I read news of cyberknife treatment with some awe. Guess It's too easy to swallow all the 'hype'.

I never realised that the FDA had gone against Casodex in 150 doseage. In my own case, the oncologist immediately gave me Casodex 150 when I asked to come off Zoladex a year earlier than planned.

So far it seems his decision was the right one for me,
and if I had been limited to Casodex 100 then perhaps my outcome may have been far different.

Many thanks for all your efforts in keeping us abreast of happenings in the medical field, particularly in regard to PCa.

Very Best Wishes,

George

England

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