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Eligard for 2 yrs complete. Cycling helps.

patrick_turner
Posts: 3
Joined: Jun 2010

Hi all,
It must be 18 mths since I last read through the group to compare my experiences with other men.

I had Gleason 9, PSA at about 8.0 before beginning testoserone suppressing pills for 6 weeks, then I began 3 month shots of Eligard under belly skin.

The Eligard website has graphs showing the measured levels of Eligard after injection and its effect on testostereone levels which drop to a plateau below what is a reference level for castration.

I have now completed the 2 year time on Eligard as the doctor ordered, and its 3 months since my last Eligard inject. I can still feel the lumps of the inject stuff, so probably the effects may keep going another month or more, but just when effects of Eligard cease is completely unknown, and Eligard website does not have graphs for the fading rate of Eligard plotted against the returning levels of testosterone.

My PSA went from 8 before treatment to 0.1 with Eligard. Docs think PSA will rise a bit if testosterone returns to "wake up cancer cells" still remaining, but the cells can't multiply because their DNA has been damaged, and after the wake up they die. That's the theory. The down side is that the cells might change to an even worse form of cancer which is harder to treat later.

Since diagnosis in late 2009, I have maintained an exercise + diet habit, and weight increase has been from 84Kg to 85.5Kg, about 3 lbs. I'm a keen cyclist and have ridden 34,000km since Xmas 2009. I'm due to turn 65 in July, and qualify for old age pension so I won't have to struggle to make ends meet financially by working long hours.

Side effects of assumed temporary chemical castration Eligard, but while riding 220km a week average at 22.5 kph average speed are :-
1. Reduction of average speed is estimated 5kph from 27kph at age 62.5 to now, age 64.5 yo.
Effect means I cannot keep up with cycling group I used to be able to outpace 3 years ago and drop in my athletic output power is down maybe 30% and so there is nobody I can ride with so social links with people I have cycled with in past have ceased. But I now keep riding and enjoy the solitude of long rides.
2. Hot flushes occur 3 times a day but not too severe. Sleep pattern is disturbed, and I sometimes need a sleep in an afternoon, then have yet another late night. I sleep when tired, but its more irregular, and sleep isn't as deep as it should be. Need to pee 3 times a night.
I also had a kidney ureter become blocked and finally had a memocath installend last Feb, but irritation to kidneys is probably still happening, so hence frequent pees. Not a problem though.
3. If I do physical work, like last thursday when replacing an exhaust fan to bathroom in my house, which meant repair to cieling, making new duct, fitting duct to roof tiles and many trips up/down ladder over 8 full hours, then I suffer terrible fatigue after, and much backache and knee ache, especially after glass of red and coffee. But I got the job done better than I would have done at 30, and although I suffered a really bad night of agony, next day I felt OK by noon, and did 50km on the bike. The bike is a key form of therapy for me, but real work strains many muscles and joints not used much while on the bike. But the bike keeps my heart & lungs very fit, RHR is < 50 at night, and weight gain is controlled.
4. I don't have any loss of hard-on fuction, and can climax just as easy as I did at 25. I'm "dry balls" now, and couldn't father kids, but don't want to. But because I have no female to please, there is no place to "post the letter". The absense of testosterone has zapped my desire for sex, so no need to "prove a point" with a jerk-off more than when I feel like it which is once a month, just to make sure the hard-on plumbing isn't damaged.
Before PC treatment I'd feel like proving a point daily, and that'd been going on for at least 40 years. The desire to have a relationship with someone female and attractive is greater now than before PC treatment, but social opportunities to meet anyone remain abysmal, because when women age, they pause from men, and I work alone, and have all male customers, and don't have many friends who know someone female I might like. Most women cannot manage to not become grumpy old hags who'd be no joy to any man. I did try online dating for 5 years and I met nobody; they all wanted far more than any man could offer, while seeing to have so little to offer themselves. I have my eye set on a nice lady of 45 at the local supermarket checkout counter. She'd do just fine for a friend I could approach for some friendly interaction without building castles in the air and getting hurt. But I don't know her partner status, and unless they are as single as I am, I cannot remain intersted. But achieving anything with any woman looks almost 99% unlikely most days.
5. Ability to do just enough work to survive without going broke has been reduced, so some help from social security has beena blessing. After being self employed since 1981, I have no work record so I'd find it hard getting a "real job" working for the "man".
I've become very good at being frugal and independant, and am the opposite of those who have big incomes while they complain how difficult it is to live, and how much everything costs.
6. Bone density went down 10% during first year without testo. I had 10% above average BD before treatments. I've been on vitamin D + calcium supplements. BD will now maybe remain stable after testo returns, if it does. I've used sun-blocking creams, SPF 30+ when out cycling in summer, and am well covered up in winter in long lycra so hence actual exposure to UV is low, even though I spend 12 hours a week out doors in nature on the bike. So hence the Vit D supplement is good policy anyway. The sunscreens stop UV, so you block chance of melanoma ( but not of sarcoma ) and hence UV does not cause natural Vit D productions.
7. Mood swings might occur more, but I'm not aware I have changed much. I could have some form of undiagnosed condition like depression, but who hasn't? Everyone gets sad after youth vanishes down life's plug. I feel a strong need to remain fit by cycling, and feel just fabulous when I have done a nice big long ride. The effect lasts a day or two, then I need another fix to take my mind off thie rotten bloody world. Most blokes do get depressed after never getting a root for 8 years but hey, why such dependance on something so airy-fairy as getting laid? Besides, getting a root isn't getting anything, its just getting to opportunty to do feel-good work, nice work if you can get it, but you have to PAY for for it, even if she's the nicest old gal in town and isn't a commercial rooter.
I'm proud to have never ever wanted to visit a commercial sex provider.
8. I'm not on any medications apart from taking 8 fish oil capsules a day. I do take a multivitamin after a long ride. Helps recovery.
9. Diet changes attempted now is increase in cooked tomatoes. Lycopene tends to counter PC cells. I am trying to reduce meat in diet, because the reduction WILL do me well, and give the animals a rest. As I get older I am getting more concerned about the environment. The way animals are farmed in feed-lots and in "farm-factories" is all utterly hideous and unforgivable to me. Mankind's carnivourous habits and general trend towards wrecking a good Planet is all a frightful experiment, and I'm glad to never have had children. Readers who have had kids should not be appalled by this, because their kids won't have to compete with mine in future.

I have written my full PC story at http://www.turneraudio.com.au/Patrick-other-concerns.html

Regards to all, Patrick Turner.

VascodaGama's picture
VascodaGama
Posts: 1550
Joined: Nov 2010

Patrick

Thanks for sharing your story.
I hope your status continues its path successfully and that you enjoy a return to normal levels of testosterone.

Though it seems that the condition (hypogonadism) has not affected you much, you can always recur to TRT patches if you want to get that needed energy back for cycling at the speeds of your friends. Quality of life in you seems to be related to the ability of maintaining a presence in a cycling society.

I wonder why you believe that the hormonal treatment (HT) has damaged the cancerous cells' DNA. This is a fact in radiotherapy but not in hormonal manipulations.
In HT you may expect the kill to happen due to “starvation”. Prostatic cancer cells feed on androgens (testosterone, DHT, etc) and by blocking it from reaching the cells receptors (mouths) one can expect the cell to die or become in a dormant status.
Nevertheless, this theory has been based on facts in cases with low grade Gleason cancers. Your Gleason 9 is made up of more aggressive types and you should consider a more aggressive form of HT (eg; ADT3) to get a grip on any advance of the cancer.

You have not shared any other info on your diagnosis of 2009 (symptoms that took you to get an initial PSA, etc), or the biopsy results and clinical stage, or the reason for your doctor’s choice for not recommend you a radical treatment (surgery or radiation) with intent at cure, which would have been logical in a patient of your age. You seem to be fit and healthy enough to go through a radical or a combination of HT plus RT.
Can you share any other test results like T and DHT levels, and image studies, etc.

In my opinion your assertion that; “…. the cells might change to an even worse form of cancer which is harder to treat later…”, is not correct. In recent studies it has been found that cancerous cells become refractory to traditional hormonal drugs because they are not affected by the hormonal manipulation that lead to a lower testosterone level circulating in our body (Eligard) or testosterone bio-structures fakes (Casodex), or similar.
In a clinical castrate environment (T lower than 0.3 ng/mL), some cancer cells manage to survive in very low levels of testosterone and even mutate to “fabricate” their own androgens. This is what it is known as Intratumoral Testosterone Effect. Cancer manage to produce its own feeding process to survive. One can verify such happening through tests. When T is low and PSA increases (condition of refractory cancer), intertumoral expression may be considered to occur for the continuing progression of the disease.

HT will not cause cancer to become more aggressive. One should try to continue the manipulation by increasing drugs power (mg) or changing to similar drugs (Eligard to Zoladex and Casodex to Cyproterone, etc). Once failure is verified then one should start using a second line of HT drugs to address the intratumoral effect, such as Abiraterone acetate and MDV3100. An older drug not as efficient as the newer ones but also excellent is Ketoconazole which addresses the intratumoral effect but it is not FDA approved for the treatment of prostate cancer.

I would suggest you to discuss the matter with your doctor and do research the net if you are interested in more detailed information.
A good book on Hormonal Treatment is; “Beating Prostate Cancer: Hormonal Therapy & Diet” by Dr. Charles “Snuffy” Myers, which describes well the "parameters" of the treatment.

I also recommend you to get a bone densitometry tests to ascertain for bone health. HT causes bone loss and you may have to start taking a bisphosphanate similar to Fosamax. In any case your cycling experiences and vitamin D supplements may have counter any effect.
I absolutely agree with your opinion on the diet. Where are you from?

Welcome to the board.
Wishing you a continuing positive look in your journey.

VGama

patrick_turner
Posts: 3
Joined: Jun 2010

Hi Vascoda and hi to all other readers.
I reply with my text ** within Vascoda's post of 28 April 2012.

Patrick

Thanks for sharing your story.
I hope your status continues its path successfully and that you enjoy a return to normal levels of testosterone.

**There is more on my more recent condition at my website page http://www.turneraudio.com.au/Patrick-other-concerns.html
This is now up to 23 October 2102, but since then there have been other things worth explaining to all.

Though it seems that the condition (hypogonadism) has not affected you much, you can always recur to TRT patches if you want to get that needed energy back for cycling at the speeds of your friends. Quality of life in you seems to be related to the ability of maintaining a presence in a cycling society.

**Last August, my hot flushes ceased and my cycling speeds began to rise. Over the last 2 years I've mainly cycled alone without the company of a bunch. I rode 11,000km over the last 12 months, right through winter and summer, as has been usual since 2006.
The "cycling society" in fact isn't very social at all, and not wonderfully convivial, and its just wall to wall men who I find I don't need to be with, and most average a younger age and I can't keep up with them, and basically there isn't much in common that I have with bunches of fellows.

I wonder why you believe that the hormonal treatment (HT) has damaged the cancerous cells' DNA.

**I'm not so sure I said that, but docs gave me Eligard for 7mths, then I had RT, and I continued Eligard for another 17mths. Last August, PSA went down to 0.08.

This is a fact in radiotherapy but not in hormonal manipulations.
In HT you may expect the kill to happen due to “starvation”. Prostatic cancer cells feed on androgens (testosterone, DHT, etc) and by blocking it from reaching the cells receptors (mouths) one can expect the cell to die or become in a dormant status.
Nevertheless, this theory has been based on facts in cases with low grade Gleason cancers. Your Gleason 9 is made up of more aggressive types and you should consider a more aggressive form of HT (eg; ADT3) to get a grip on any advance of the cancer.

You have not shared any other info on your diagnosis of 2009 (symptoms that took you to get an initial PSA, etc), or the biopsy results and clinical stage, or the reason for your doctor’s choice for not recommend you a radical treatment (surgery or radiation) with intent at cure, which would have been logical in a patient of your age. You seem to be fit and healthy enough to go through a radical or a combination of HT plus RT.
Can you share any other test results like T and DHT levels, and image studies, etc.

**After diagnosis in Dec 2009, my specialist doc said I had agressive cells, maybe young man's type, and suggested robotic radical surgery for PG removal ASAP.
But I also had a constricted ureter, and the decision was made for open surgery instead because a number of other things would be done while they had me opened up.
The op was in April 2010. But afterwards docs explained to me they could not risk PG removal because of the risk of "spill", ie, cancer spread and they said PC had just gone to seminal vescicles, ie, come out of the capsule, and that I needed HT and radiation instead or surgery.

In my opinion your assertion that; “…. the cells might change to an even worse form of cancer which is harder to treat later…”, is not correct.

**Well, I'm only repeating what a an oncologist told me later. Seems possible to me. There ARE some cancers which just cannot be cured by any known means. And I may die sooner rather than later. The 30% of cases where men die of PC probably were all treated and a most would have put up a fair fight, - then lost. **** happens, no?

In recent studies it has been found that cancerous cells become refractory to traditional hormonal drugs because they are not affected by the hormonal manipulation that lead to a lower testosterone level circulating in our body (Eligard) or testosterone bio-structures fakes (Casodex), or similar.
In a clinical castrate environment (T lower than 0.3 ng/mL), some cancer cells manage to survive in very low levels of testosterone and even mutate to “fabricate” their own androgens. This is what it is known as Intratumoral Testosterone Effect. Cancer manage to produce its own feeding process to survive. One can verify such happening through tests. When T is low and PSA increases (condition of refractory cancer), intertumoral expression may be considered to occur for the continuing progression of the disease.

**I'm not an expert on PC terminology. Anyway, my last PSA 18 September 2012, just 1mth ago, showed PSA has risen from 0.08 to 0.50 in just a month. I was warned that when I came off Eligard, there would be a PSA rise.
I had another PSA test taken today, and I hope it has not risen to say 6.0, another 6 fold increase. After results come back next week and including testosterone levels, I'm sorting it out with docs and oncologists to see what treatment if any is necessary. Maybe I'll need another PSA test in another month. Maybe I will go back onto Eligard, or intermittent treatment, but right now I don't have a clue if I have cancer which is untreatable, ie, resistant to RT. I may have to live the rest of my life without testosterone. I'm in no-man's land where I don't have a clue who is winning.

HT will not cause cancer to become more aggressive. One should try to continue the manipulation by increasing drugs power (mg) or changing to similar drugs (Eligard to Zoladex and Casodex to Cyproterone, etc). Once failure is verified then one should start using a second line of HT drugs to address the intratumoral effect, such as Abiraterone acetate and MDV3100. An older drug not as efficient as the newer ones but also excellent is Ketoconazole which addresses the intratumoral effect but it is not FDA approved for the treatment of prostate cancer.

**I'll have to srt that out with docs when I know more about my exact condition. Perhaps PC spread someplace else BEFORE I had RT, even though no scans or other biopsies from lymph nodes inside stomach yielded a positive result back in April 2010. I just don't know what my real status is, and it will take time to find out.

I would suggest you to discuss the matter with your doctor and do research the net if you are interested in more detailed information.
A good book on Hormonal Treatment is; “Beating Prostate Cancer: Hormonal Therapy & Diet” by Dr. Charles “Snuffy” Myers, which describes well the "parameters" of the treatment.

**I'll look that up.

I also recommend you to get a bone densitometry tests to ascertain for bone health. HT causes bone loss and you may have to start taking a bisphosphanate similar to Fosamax. In any case your cycling experiences and vitamin D supplements may have counter any effect.
I absolutely agree with your opinion on the diet. Where are you from?

**After a year on Eligard my BD went down about 8%. So I began vitamin D + calcium. I was told I still had well above average BD.
I'm from Australia, and I live in Canberra, the nation's capital. Irish-English-Euro ancestors. I've been here since 1972, and the environment is about the cleanest one in Oz. I gave up smoking at 34 when I reached 1/2 a pack a day, I hardly drink. I eat just enough to maintain weight at 85.6Kg, BMI = 25. I could be 3 Kg lighter, and maybe by Xmas I could be because weather is warming into summer and food intake goes lower, and I have testosterone back again. But then additional treatments might wreck such ideas.
I eat a diet full of fresh vegetables, fresh fruits, huge salads with little dressing, adequate protein, and never high GI carbohydtrates. I thought Nathan Pritikin was about right about diet, and of course most western nation people just cannot bring themselves under control, and they mostly secumb to the marketing BS by Big Food. I will never eat at McDonalds, or drink Coca Cola, its all rot-gut. I don't have butter/margerine or sugar in the house I do use olive oil sparingly, and I always carve off the fat from any meat and send that out with the rubbish. My docs are much pleased by my lifestyle habits and they never feel I am just another lazy fat smoking SOB who isn't worth helping because he isn't helping himself. As I type to you now, my resting heart rate is 48BPM. Its been 65 when I could not exercise.
I cannot recall any time during the last 2 years when someone aged over 60 has overtaken me during my rides of up to 120km. I enjoy being fit, despite the aches and pains it generates. In 2005, docs told me I needed 2 new knee joints, I had bad pains then, but since then I've done maybe 60,000km and I can live with my damn knees. I inherited some of the worst characteristics of my mother's knees - she was anything but athletic. So I loathe walking far, and never run. But I can ride, and I love the speed, the motion, the zing-along, the land, lakes, rivers, sky, birds, grass, trees, and when I'm out on the bike, the damn world can go to hell.

Welcome to the board.
Wishing you a continuing positive look in your journey.

**I like to think I'm able to consider whatever may happen. It could be a nice long old age, or a short one. I reckon I'll die alone, because I've never got around to having a family and stuff, and although I like this town, most friends I've had have left it. I think I'll give my body to science. I'll at least get one final moment of glory, when they wheel me outa the fridge and sharpen up the scalpels. I reckon docs and students will say "WOW, get an eyeful of this old *****, what a very fine corpse he is!"....

**When all is said and done, life is mere therapy, and its final side effect is death. I like to think that if I am fully alive, I will realise I could be dead. We see things best in terms of contrast.

Between now and death I plan to do what I can until I cannot. I'd even like to marry again. Been 34 years since last time. But at 65, I realise I am Mr Invisible, or Mr Untouchable, Mr Short Term and Diseased, and what woman would take me? None took me properly ever, even though I was kind, fair, and energetic. Nobody gets all they want from life. And most theories from do-gooders and advisors often sound so hollow, so in fact we are alone, even when thousands live nearby, mostly suffering dreadful Affluenza and Consumeritis.
**I also need to try to do some Yoga. Its so hard to find a group session with the right sort of ppl and leader not hell bent of forcing me along.
Pardon me, but I am a reluctant member of that species called "Homo Wrectus."

**Patrick Turner.

VGama

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