How many injections of Lupron can our bodies handle before damage to other organs and our body? Anyone know how long we can be on it?
Lupron: How many injections of Lupron... - Advanced Prostate...
Lupron
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Riverside2020
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Women live their entire lives with castrate levels of testosterone.
Not exactly, women's normal testosterone levels range from 15-70ng/m, so not all women live their entire life at castration level.
Thanks for the pointless correction. The point is that it may not shorten life span to live without testosterone.
Your initial response to the OP was pointless-- comparing two groups (men and women) with completely different T-profiles. If you're going to hold yourself out as an expert, at least put some thought into it.
Love this type of information, no matter how we get there!
Here's a list of acute and chronic SE's, the longer one is on Lupron the higher the chance of chronic SE's. I've been on Lupron for 11 months and have elevated BP, some muscle fatigue, some hot flashes in the evening, and recently some joint pain has popped up in my wrists while doing pushups.
Great article
I don't know the answer to your question but your list of side effects rings true. Some men seem to shrug and have few if any side effects. I wasn't so lucky (and it sounds like you aren't either). Wt gain, emotional roller coaster, shrunken genitals, change in BP and bone density, swollen ankles, joint pain (which appeared overnight and disappeared 6 wks later), incredible fatigue, and so on.
Good luck to you.
EdinBaltimore
Yep. Peanuts where my nuts used to be, inner tube around my middle, no hair on my face , and hot flashes not to mention lots of others. My doctor switched me to eligard shots monthly. It did help ,regaining some muscle mass. Oh was on lupron for 2 years.
I feel your pain. Oh, yeah, hot flashes a go-go. No constant sleep at night for at least year and a half. However, found that pot gummies helped a lot!
I had Eligard for 1 mo and then Lupron for 9 mos. Last shot in May 2019; 3 mo duration each. Side effects less but continue. T has started to return. A robust 70! LOL Doc says it might take another 6-9 mos to return to baseline. Ugh.
Thanks for responding.
Edinbaltimore
I'm hoping for the day I don't have to shave...what's up with that...everything else has so gone 'femme' ...I guess I can look forward to the day I'm billed as the bearded lady...after I run away with the circus.
Only hair is on my head and my chin. My 40 year old mustache is missing in action. 🤪🤪🤪
Yep, chin hair only after 25 years of beard down onto chest.
Sorry, I forgot the question.... would you repeat it please...
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 02/20/2020 7:20 PM EST
The question was how many infections of bupropion can bodies handle while playing the organ. I’ve been on Lupron 15 months and it hasn’t bothered me at at at all. . Really .... I’m fine .... ......... No Lupron frog here .
😂😂😂😂😂
Did you mean "playing with my"?
I forgot.... to remember.... am I here?
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 02/20/2020 8:24 PM EST
Yayahahahaya brother a bunch of us are barely here ... but “ here “ is the key word. Still here is the key thing.
💪💪💪💪💪 ✌️
Don't forget the ice cream.. Chocolate chip please..
Or a well made martini, stirred not shaken, one queen olive and a small of vermouth.🍸🍸🤠
Oh yeh
<--- slaps self on forehead with palm of hand... Thanks for reminding me....
2 scoops of course....
Good Luck, Good Health and Good Humor.
j-o-h-n Friday 02/21/2020 12:10 PM EST
j+o+h+n = liveforever 
What do you want for your 99th birthday?
To be posting to everyone here...while I'm eating a bathtub full of chocolate chip ice cream. And kind sir what do you want when you hit 99?
Good Luck, Good Health and Good Humor.
j-o-h-n Friday 02/21/2020 5:00 PM EST
You guys are so funny for such a serious subject. I gotta laugh to keep from crying sometimes. 😥😊
Hubby cries and cries. I hate the Lupron for him. He's been on it now for almost 4 years. He's refusing to take his next one if hes still here when it's due.
Hot flashes nearly took him out, bone fractures, rod in leg, raging anger, sobbing. He'll be glad to be rid of neccessary evil.
Pot gummies you say? I make pounds of them, pain cream and whole plant paste. They helped my husband alot.
Bupropion is Wellbutrin which an antidepressant, comes in a pill form. Doctor tried to give it to me the other day for my depression over my husbands decline.
Women dont need loads of Testerone?? 🙄
I am so sorry to here of your husband's struggle and your depression over his situation. The only thing I can say is to discuss any alternatives with your MO. There are some and get off the lupron if it is the source of his discomfort.
What is his PSA now? If it is very low he may be able to go several months before he needs to do anything. I am sure others here can give you se excellent advise based on their knowledge and experience.
Good luck and hang in there.🍸🍸🤠
His PSA is around 90 now. We are no longer monitoring it as he's on hospice now. His bones hurt so much from the cancer spreading.
My heart goes out to all the ladies and gentlemen suffering through this disease. May you all look r each other and hold each other close.
Our daughter her husband and their 4 children just left this am for Idaho. I dont know if my husband will see them again. 😥
It sounds like you are a great wife and caregiver SF121277 your husband is a lucky guy , thank goodness , how good is that. You have to do whatever you need to do to hang in there and take care of yourself first .... that way you can be a positive influence for your husband too. Sounds like you should get your husband in for some attitude adjustments from your medical team ... something to lift his depression as well. You should have a good discussion with them for him. He probably has some good quality time left if he fights for it ... more time for both of you to be together.
All us adt guys cry off and on , sometimes a lot ... mostly it’s the massive hormone change adt brings. Sometimes we forget it’s the drugs talking... it’s easy to forget in Lupron fog.
None of us should ever make major life changing decisions without taking into account the impact of powerful drugs on our thinking processes. This might be a good thing to remind your husband about ... but be sure to discuss his depression issues with your medical team.
Thanks for your great post 💪💪💪👍👍👍
Thanks. We are trying to work through the anger and depression. Zoloft seems to be helping him. It's made a huge difference in his anger outbursts. 😊
It’s tough on everyone concerned ... and the more love .. the more anguish in both directions.
Still when you see him really depressed, mention it to your medical care team .... you are both his caregiver and advocate. Sometimes it’s hard to find just the right treatment help, there are so many. if you help dial it in , that can make stuff work better. No one knows him better than you.
My heart goes out to both of you,...... here’s hoping hubby can find a little more peace.
💪💪💪💪 👍😁
The treatments affect us at different levels. Hot flashes, anger and depression hit most of us on many different levels. Depression is terrible. Try to do what ever makes you or your husband happy or lighten the side affects. I have a crutch, ice cream. Look forward to having some each day usually. At this point, everyone needs a crutch, mentally or physically. Yes, my illness is hard on my wife of 47 years. All this affects her too. Neither of us know what the future holds. I just had a zoemeta infusion (for bone strength), came home and slept the day away. For me, this was another day without pain. I have pills for that too if necessary. Use them once in a while for bone pain. I hope that the docs find something to make your husband feel better. When he feels better, you will too. Sorry to hear he's on hospice now. They will make sure he's pain free. My prayers are with both of you.
Sorry to hear that kind of suffering !
I am thinking am I lucky or not? I asked me RO about Lupron as they put me on Zoladex? He said "Oh we can't afford that down here in NZ, am I luck? I have minor minor side effect and for 2 injects it seems to do the job (as per amazing results). I do wonder about the unseen, unfelt side effects. I do a lot for myself in every-way everyday possible.
I wish the best for you both. Humour is a serious necessity :))) :(((
I’ve been on Lupron - Xtandi - Zometa for 15 months so far. The results are great but it’s devastating and I often wonder how long can anyone take this. My blood pressure is erratic, my blood glucose all over the place and I’ve developed what is called a “ non specific “ cardiac arrhythmia. had none of this before Lupron. Plus I have the regular truck load of SEs ... fatigue, hot flashes weight gain , big boobs ... shriveled gonads .. the works.
There is no talk of taking me off of it , I expect to be on Lupron for the duration at this time. Many here have been on Lupron for many years. Lupron - Xtandi has been a wonderful life saver for me.
😁
I am on Lupron Xtandi with little side effects...except no libido. So now I spend my money on cool stuff instead of women!!!! Blue Skies Sky King and Penny (woof)
Sky King? You must be as old as I (77). Also retired pilot.
Those old captains on the DC-6-7 told me that radar would cause cancer, I guess they were right!
Bob, G9
actually 67 hoping for 77 ....A retired sports chiropractor who grew up flying with pop. I actually got my commercial at the urging of one of my close friends who runs a flight department with two Citations...a 560XL and a 680 Sovereign . The company now is about to acquire a Longitude...I fill in a few flights a month....My 58 Baron is color radar equipped maybe I will switch it to the on position on the ground and stand in front of the nose!!!! Blue Skies Sky King and Penny (woof)
I’m flying a Cessna 170 right now .... in my massive three large screen sim pit ..... communicating with the tower , auto pilot , flight plans , aero maps etc. there is a lot to learn but flight , to me , feels satisfying since I have so much adt trouble with my mobility. I have nor-cal scenery and fly around my locality and airports.
Yea ... I remember Sky King ... always loved it, kinda like the Lone Ranger in a plane yayahahahaya.
Peace brother ✌️✌️✌️
Hey Kaliber!
Non specific cardiac arrhythmia?
Try some high quality CoQ10, morning and evening minimum for the arrhythmia.
A doctor friend of mine had a heart attack in his mid 80's. He was still practicing in the walk in clinic he had started which was the first of it's kind in my state at the time of his heart attack! He survived but had arrhythmia which no meds controlled. Being a "cool old doctor" the younger hot shot cardiologists were involved in suggestions about meds and so on. For whatever reason, likely his own, he didn't get a pacemaker. He probably wanted to do as little as possible. Well, I had a sinus infection and went to the clinic. He saw me, told me about the heart attack and the arrhythmia. All the hot shots and all the meds they prescribed failed to control his arrhythmia but he began reading and started taking CoQ10. He told me that he took four a day and that is all he took--no meds. His arrhythmia disappeared, he returned to work and he had also started working out again!
An aunt had arrhythmia. I got her on CoQ10 pills, two a day. Her arrhythmia disappeared. Several years later she fell and broke her hip and shoulder. The hip was an easy fix, the shoulder not quite. She was in the hospital then a nursing home, both of which frown on people taking supplements. After about five or six weeks her health went bad. I had a call from my cousin to come to the hospital. He gave me an update. Garbage food for too long and her CoQ10 was taken away. I put a bag together with organic whey protein, chocolate syrup, whole milk, a shaker cup, some semi soft boiled organic eggs and wheat toast, top of the shelf multivitamin/mineral. She was listed as being on palliative care--waiting for her to die a she was too ill to be moved to the nursing home. When I got there she was "hooked up". Her heart rate at the age of 89 was between 115 and 155! This for a woman that had a bypass years ago! Her heart was literally cavitating and not pumping at the high rates. I asked my cousin about the CoQ10. She hadn't had any since she fell and was in the hospital and nursing home. We had a conference, he and I and he spoke with her doctor. Believe it or not the hospital had CoQ10! Her doctor prescribed a CoQ10 pill in the morning and night. Well--imagine the next day after two CoQ10 pills her heart rate was in the 80's! That afternoon, with assistance, she took a stroll down the hall using her walker! She lived to see her 90th birthday.
Currumpaw
I take about 30 supplements every day, coq10 has been one I have used for a couple decades. I take nearly all the standard ones from here in the group as well.
My Kardia home ekg recognizes I have an arrhythmia and calls it nonspecific, not one of the many it’s programmed to recognize including normal. My GP said it’s a minor bundle branch issue that would clear up if not for adt. I didn’t have it until about 6 - 8 months of adt. That considering everything else, not something to worry about for now.
Thanks for the great info brother.
💪💪💪👍👍👍
I am on Lupron for the rest of my life. I don't know how long that will be. Hopefully long enough to die from old age.
So am I. I have been on Lupron 4 times. The last bout was two 6 months injection back to back. The last one was the hardest. I am on "holiday" now but will return after 6 months or whenever PSA rises. I try to be positive. If it was pancreatic cancer or lung cancer I would be gone by know. Just helps the perspective
5 years and counting.
Boywonder56 in reply to
3yr birday today...no se 's her...now if i could only remember my name....oh yeah...luprechan
lincolnj8 in reply to
Good news for me, thank you. I'm 2 years in..
💪 👍
I am on my 28 rounds of lupron!!!!! going on 20 years!!!!!
You are very correct in that the damage to the brain and body increase over time, some side effects which at the start reverse, start to stay, the day to day road becomes increasingly difficult, but what is the option??
My brain is now mush, my body hurts sometimes to the extreme of wishing I could die on the spot, I have turned into a bowl of jelly, I am reduced to maybe 3 or 4 hours a day where I can think and move.
Until I know what is on the other side of the grass, can move sufficient to leave some rubber on the road from my hotrod, I do not intend on letting go.
So, such it up boys, try to take a break , if only for a few months, and keep at it for as long as you can.
I am only still here because the guy upstairs and the one below are fighting to see who has to get me!!-or so my favourite aunt threw out one day!!!!
REMEMBER TO LIVE LARGE, ROCK ON AND SPIN SOME TIRES EVERY CHANCE YOU GET!!!!!
1966 fairlane owner here....
I had three shots of Lupron three months apart. The two pages of side effects listed for Lupron use was just about what I experienced. I quit taking it. Life is for living without all of that stuff. I will take the consequences.
I totally understand where you’re coming from.. it’ll be one year of lupron injections & I’m looking forward to even a short break. Having finished chemo in September, I would like to experience life without all the aches, pains, brain cloudiness & lethargic feeling, not to mention having libido back! God bless you brother!
Been on it 2 years, other than the hot flashes and shrinkage and elevated BP life is good. Trying to manage the weight gain is getting to be a challenge but food is so good.
We are all here because of drugs like Lupron, I am thankful that I am alive.
Here's a good tip though, take the side effects first, then take the Lupron, I find it works better. 🤔😳😉😂
Yayahahahaya absolutely 😂😂😂
I had diagnosis of Pca in 2009, began ADT ( eligard, lupron, lucrin) for 2 years and had EBRT in that time as a primary treatment. It didn't work. Testosterone returned after the 2 years within 3 months and I felt stronger and went faster on bicycle like before I began ADT.
Psa went back up to 8, so I re-started ADT in 2013, and have had had since then, 6 years now.
2 years of ADT are tolerated well by many men, because they recover fully from side effects of hot flushes, and weaker athletic performance. But after I re-started ADT, within another 2 years, my Rodger became totally dismantled, and less ability for any hard on, but still enough to please a lady, but all felling of pleasure and orgasmic ability just vanished, and skin of head became so fragile it tore easily. The sponge like tissue in centre of Rodger clogged up and didn't expand, so Rodger became like a brass garden tap, a drain pipe with bend towards ground. No more sex would ever be possible unless some lady I met was OK about a finger job or a well done muff dive. I didn't mind.
I am now 72, but still cycling well despite ADT and chemo and LU177 etc, and I have never been overtaken cycling round in my city by anyone near or over my age. However, quite a few young ladies are able to ride faster, but all that is to be expected. I NEVER see any lady of 72 out on her bike.
Side effects of ADT are lower if not exterminated sexual ability, and that's a mental rather than physical bother. Consider the bigger mental effect of losing sexuality on a young soldier who steps on an IED in Afghanistan. Can lose legs as well as Rodger and balls.
But prolonged ADT hastens bone density loss, so falls can be a problem. Only way to beat this bother is to walk a lot, and its the impact that causes bones to stay strong.
I would like my testosterone back again, but it would fuel new growth of my Pca which is now under control, even though Psa is rising. I had rising Psa before. I am used to all this game I have to play fighting Pca.
I am cycling about 200km+ a week at present, all my docs are well pleased with my health, apart from lurking Pca. I have BMI 23, waist < 95cm, resting HR 45, and can cycle 30km across town with a hill or three on the way and at av speed of 24kph.
Cardio-vascular risk is 12%.
If I had big problems with any other parts of me they would show up and stop me being athletic.
Women don't have much testosterone, but do have small amount. They have more when young, so it gives them sexual drive when a woman is propelled to get pregnant and be in the hunt for the right man. I observed them when this high level of T diminished in mid 20s, and their personality seemed to fracture and some became allergic to anything male.
Their hormone system seems more complex than in us men. But my mother lived to 98, died of old age, so she sure didn't need testosterone. If she'd taken some, she may have been more active, but what the mental change may have meant to us remains unknown. In elite athletics there are strict rules about levels of T in men and women athletes. Above a certain level means an athlete is taking T pills, or shooting up with it, and of course many athletes do all they can to beat the rules and not be found out.
Patrick Turner.
Love it pt, the nitty gritty ... the news of Roger a bummer tho yayahahahaya yikes. Still better than the alternative I guess but iffy yayahahahaya ewwwwww
💪💪💪💪😁😁😁😁
10 years ago, my urologist suggested use of a kind of tubular suction pump vacuum to achieve a hard on when on ADT. Somehow you get Rodger standing upright, then quickly put a rubber ring around Rodgers ankles, and that constitutes a he-rection, and you are able to then allow Rodger to continue his favourite pastime of temporary pussy destruction, something that is supposed to make women love us more than usual, and put up with married life without variety. Then you remove the O-ring, and hope you have not killed Rodger by strangulation of blood supply. I never met anyone who said that all feels good.
Unfortunately, my urologist looked like a man who was still living with his mother, and unable to really get anywhere with a lady. Really, she'd have to shut her eyes tight and just think about the money. So he would have zero idea of how ridiculous it is to use a vacuum device to lift Rodger out of the blues. Ciallis and Viagra would help. But the problem is that after about 3 years of ADT, Rodger becomes crippled, severely disabled, and gets brain death, and all the fun Rodger has is in feelings in his head fades as the nerves to that seem to die. My guess is that Rodger needs the diet of testosterone to keep being the man he is, and when starved, he literally folds up and goes numb, but be thankful he does not grow teeth and become a one-eyed zombi, likely to take revenge on his destroyers. It seems to me he atrophies, and cannot even change into a good working Klee Toris.
I still get good hard ons, but badly bent ones, and extensively long dreams that last even when interrupted by a trip to the loo to pee, a 4 times a night thing, and I try to tell dream to change, but it keeps going, so this proves much that controls Rodger is in our brain. When young, this part of brain used to dominate all we did, led us around by our noses, pointing to available TPD possibilities, thus delighting Fanny Able anywhere she appeared with a smile of welcome.
Youth is that country where we all spoke a different language, one without meaning, while all the time posing to look good while Rodger and Fanny tried each other out.
This process was interrupted by work, marriage vows, and having kids, and sinning a lot, and then magically by about 45 it was all over, and divorsical movement spread across the land like a plague. No amount of Viagra could save things. So many kidded themselves they had not changed since their time in Youth, and many ppl's habits led them to fatness and becoming a crude caricature of what they once were, thus killing Desire, and bringing on Anks Ietty.
Nature normally disposed of humans before 50, but now some ppl living to 100, and if I visited Miami, I'd see some ppl 90 parading around trying to look cool and 25.
All this is entirely forgivable humanness.
And if you looked closely at Canberra from one of those Hira-drones you can ride on, you'd see this remnant male character of 72 with same weight he had at 18, cycling about with feelings of not having done enough to save Society from itself, and steer it in a better direction. I doubt humanity wants any advice from this old dude; it is determined to make mistakes I would never have made, and call the mistakes a great success. I will not be around to say the most un-cool thing that's sayable to young folks "I told you so".
And despite the shortcomings in personal existence experienced by professionals in medicine, they mostly manage to extend life to allow us to wonder about life, and laugh about its incongruities.
I'll cycle a little today, and maybe do a big one tomorrow, weather has been nice these last 2 weeks. Bush fires and smoke before new year increased sales of pills for depression, and fear of climate change. So what if Australia gets a much bigger desert than it already has? The Arabs seemed to have coped OK in deserts with perpetual hot weather. So will ppl here in future. They won't blame me for causing it, just like I don't blame the English for causing me to have a blighted life because I was partially Irish.
I don't have questions now about Pca for which I need answers. I must wait and see a little longer before any action could or should be taken.
So its another good day happening. Biggest problem at moment is that my little swimming pool needs a new liner, and 3 weeks ago I thought I fixed the leaks real well, but it then got bigger holes, so its nearly empty while I wait months to get a fix from someone that will not empty my bank account. Vinyl liner is 37yo, and one company selling new liners said I have the oldest pool liner in Australia. I cared for the things I own, so they lasted well.
Patrick Turner.
Wow .... that explains everything. I had one of those penis pump kits a doctor gave me about 20 years ago ( 4th marriage, 43 years ) ... I never looked at until lately. Since my Roger has shriveled to the size of the tip of my thumb and retracted , I thought the kit was a prosthesis of sorts ... I just filled it with silicone glue and shoved it on what’s left of poor little roger and let it dry.
Now I have a manly large plastic Roger and when I have to pee I turn on the pump. Works great ( messy clean up tho ) ... it’s kinda bulky and hangs down a lot .. floats up in the bathtub kinda looking like an erection which is kewl. Looks impressive under dress slacks too. When I’m swimming, it’s a little awkward socially speaking I guess. Now I’m thinking I might not be using it right or something ...
And .... better not get an itch down there , fishing around in that pump hose opening on the tip , with a coat hanger can be down right awkward and dangerous. I’m thinking of adding some color changing LED lights for that festive touch in the bedroom. Maybe add LEDs bright enough to add some pizzazz to your big bulge shinning thru your dress slacks. Maybe add a battery powered vibrator with a magnetic switch ... hummmmmm. ( pun )
🤪🤪🤪🤪🤪😁
Gee, 4 marriages. IMHO, you are a beggar for punishment + very keen on being married. I still look OK when starkers, but little would any woman know that's as good as it can get, and as we all know, when the gals are still able to do it they just won't hang around with a man who can't.
All that game means zip to me now. As for adding a silicone Rodger, well, NOOOOO Thanks. Ladies would look, "Wot iz dis ting yo have here mista? Duz yo tink I am stoopid?" This is of course the question you must not answer, unless you are a fully trained diplomat.
I have often thought the ideal lady for me has had the equivalent desexing that I have had from doctors, ie, vagina has shut right down, Klee Toris rendered numb by cutting all its nerves. But we'd be equals. Trouble is that women feel far more put out by any changes to body that prevents them continuing to be 25, so getting overweight, losing breasts to Brca will completely wreck self esteem, and the word "relationship" is utterly terrifying.
But I ain't no expert on all this stuff, and simple fact was that a relationship could last, or not last, and when it didn't, it could not be rescued so just let the lady go. And no matter what she said, did, or didn't say, did not do does not allow parting with anger and giving the black eye or two.
If a man is nice to a departing lady he gains because she cannot fault him when she talks to the lawyers later to try to get money. So I never had any court cases trying to fight ladies. I gave them enough while they were with me, and after they left, so they'd have lost a legal challenge, and I didn't have kids, and I'd paid for all the housing myself, and of course I have no idea what any of them would now say to or about me and I really don't wanna know. All would have a list of health problems and I was never to blame. I don't mind fighting Pca on my own.
Wymmins liberation was about their rights, and I insisted they have them. But love involves duty of care for themselves and their man to whom they think they belong, and the feminists I met had zero idea about any of that.
But I worked for many couples with splendid ideas of what love meant, and these were the salt of the Earth, so making a nicer house for them was very satisfying.
Sorry to drift off topic, but I see issues of life all interconnected.......
Do try to have a good Sunday,
Patrick Turner.
Yayahahahaya yayahahahaya you are right brother ...all of this IS. related to guys with adt cancer treatment... stuff we face every day don’t we. I’m 74 and been married nearly all my entire adult life. Two of my marriages,alone, add up to 50 years. I do pretty well with long term relationships, I just learn to say “ yes dear “ “ yes dear “ , “ whatever you say dear “ . ... over and over ... that’s all it takes yayahahahaya
Dunno about where you live , but most ladies in these parts know all about silicone Rogers ... most have a few in the bedroom dresser drawer and Some have batteries in them Yayahahahaya yayahahahaya Large stores the size of a supermarket have entire departments that sell many varieties of them.
I already have boobs larger than my wife’s too,
or close to it. I still think about it now and then, mostly remember old times , long ago. I think more about staying alive these days, after about 6 - 8 months on adt, my interest fell to zero. Lupron will do that to you. No biggie , ( get it ...” no biggie “ ? ) ..
Have a nice weekend too brother .. its still Friday here, tomorrow morning will be Saturday. It’s been great talking with you to the other side of the planet ...kewl.
😂😂😂😂😂
Its Saturday night here, and a bit of a fever night, going back to daze when ya wonder if you'd score later or not.
But by 60, I had to gently tell a lady of 59 I could not maintain desire, and that we quit the game of BF and GF, and she had a list of mental bothers and a bad temper.
Many emails about life occurred, and I ended up finding that the only thing that really meant I did not have high desire was "Now darling, I have to tell you that I have discovered that I prefer to ride a bicycle for 2 hours rather than try to ride you for 2 hours. " It must have taken years for her hate to subside, instead of asking "Well OK, but why is that so man?" You see, that is hitting the ball back, and I wood have had to have an answer, but really, that meant I describe her and her effect on my bank account and that i could not afford the attention she wanted because at a restaurant she never shared expense. She earned more than me, and had a "mad"pension as well for her depression etc. There was the more difficult explanation about her sexual methods that had me yawning. Not everyone is a good lover. I won't go into further detail, but that was in 2006, last time I did it with a lady. I had not yet given up thinking like a 30yo. But getting Pca sure had me thinking I was not 30.
So I just kept cycling, working, until I could retire. Dames are too difficult.
Patrick Turner.
Yayahahaha you’re absolutely right about that brother . I still can never figure them out after all these years . Its a full time job just trying to get along with them. 😂😂😂😂😂
I will never be given a degree in Male-Female relations if I did a uni course on the subject. Females tend to not have predictable states of mind at any time of day, so a man finds himself unable to really communicate. So evolution of cultural practices in countless societies has laid down a set of rules for what happens between men and women, and pity help anyone who won't accept the rules. Of course the rules in cities full of ppl with no local tribal connections means rules are abandoned, and ppl try to marry based on ideas they learnt in pop music about "lerve" and in Hollywood Movies where most ppl who work at that place are divorcing and having affairs and snorting cocaine and boozing so what wood they know about life, so why would I want to watch those movies? Reality cannot be accepted when ppl expect life to be an easy fantasy, so any deals made in a church can't mean much, so marriage becomes that lasts according to probabilities of luck, more than good habits and good morals. I am pleased to not have to worry about the whole darn business of being married. Would be nice with right woman. But there's just never anyone there to meet.
Patrick Turner.
Yea what a disappointment when we find out that Ozzie and Harriet, and” father knows best “ movie families don’t exist n real life yayahahahaya. Dang...
still tho .... the world changes constantly... like millennials are living with parents and not getting married etc.
There is something new nowadays called “ social media “ and dating web sites. You can find an available lady Your age in a couple of days ... sometimes just hours. If you own a home and a car and have a means of self support , the ladies would be eager to meet you. They don’t want someone that they have to support or carry along. They are looking for stability... if your life is stable, then you probably are as well ... you’d attract ladies like that. The advent of web dating sites makes it easy .... dating just for companionship , just talking with a web cam , looking for that soul mate , Or Loving wife nowadays no one needs to be lonely anymore.
For some ladies ...guys like us would be irresistible. Lots of mature ladies aren’t as interested in being intimate as they were when they were much younger. Stage 4 guys on adt mostly aren’t usually interested much as well , and probably not able anyway. A match made in heaven. Relationships can be deeply loving and meaningful with minimal sexual activity. 😁
An open mind is everything.... mature ladies need love too and they have the experience to back it up. Mature dating sites are loaded with lonely mature ladies anxious to meet someone. You could just start out with a video chat girlfriend or girlfriends... no matter where you live on the globe that has internet ... then see what happens from there. Nature will take its own natural course . Think about it. 😁😁😁😁😁
Us guys don’t need any of that coke or booze ( well maybe the booze yayahahahaya) do we. Guys like us croakers have loads of narcotics like morphine, oxycodone and dilaudid we eat all the time ... way better since a doctor gives them to us ...’eh yayahahahaya yayahahahaya. Intoxicants are intoxicants ... more or less ...
Peace brother ✌️
I had no kids, it was my contribution to efforts to reduce global warming, prevent traffic jams, and other men's kids ought to be happy their kids don't have to bid against mine at house auctions, after which young ppl are signing up to paying off loans they will still be paying off in 50 years time, thus making the rich even more obscenely rich than they already are. But its no wonder millenials won't move out or marry and won't have kids, they all feel disenfranchised, devalued, so national birth rates will go down. They'll masturbate much more often than do it with anyone else. They can't fix the world.
I tried online dating groups for many years and read hundreds of profiles, and spent money to email them through the dating website and I got no positive response. When I did some demographic analysis for how many single women there were in my city and at around the right age, ie, my age or slightly younger, it seemed that there were enough opportunities for any man alone, but fact was that NONE in my town were at any dating site. Plenty of young ones were, and although a few older ones were there, they wanted young men. In other words, dating is all about getting sex, and nobody really wants love, and the word love never ever appeared in any profile from women, and the profiles all looked so similar they may have been fictional.
All the "top" dating sites then became so awkward to use I could not figure out how to contact anyone. The advertising and spamming was intolerable. When I gave up searching online 4 years before I got Pca, I felt relief. The whole social media thing with FarcePuke was equally one giant scam, a trick upon mankind. I tried being on FarcePuke twice, 18 months each time, made no friends, got no followers, so I just put a message saying to contact me through my website where email address is located. Nobody did. Well, I don't need to clutter my life up with uncommunicative ppl and fake friends.
I can't even use a mobile phone. I tried a simple one. Docs told me to get one because they might need to contact me. No go. "phones" are not for me, they are way too expensive, and all i ever would use one for is to phone, all the internet stuff including Skype for talking to docs giving Lu177 is much better done on my laptop. I like emails. Many other pp hate emails. They cannot type what say, and mean what they type.
I am surviving well without any pain medications, or cannabis, or I don't mind that Nature does not take its course as its supposed to with regard to female friends.
The last 14 years has not included any closeness to females. But last time any female felt something deeply about me was a female doctor who gave me a DRE in about 2009. She could not feel any hard lumps, because my PG was one big soft ball of Pca, diagnosed soon after that as a Gleason 9, which was later found inoperable.
I very much like the day to day dealings I have had with female doctors and nurses and my dentist is a female, the best I ever had, but I always dine alone. Talk to myself at home. I cycle alone. I like company, but don't need it. I fight Pca alone. When I go to hospital, I don't have visitors. Life is simple. All the togetherness that was supposed to happen in life just didn't stay constant for long, and became impossible when I got older. It is OK.
Patrick Turner.
Well .......... Pt ..... sounds like you have been around the block a few times and seen a lot brother. We all have to do what is right for all of us ... what feels like it is good for us.
All of us stage 4 , guys are pretty much released from all the regular stuff in life we have anguished over in the past. None of us need new 30 year house loans , or probably any new 7 year car loans yayahahahaya. Nor do we need to worry about where the world is headed or how the generations are evolving or politics looking very far into the future ...especially if we are already old. That freedom can make a lot of improvement in our lives if we embrace it.
All we need to worry about mostly is having our loved ones close ( you have to love yourself first and foremost to be able to share love with others ) and trying to enjoy what’s left of life ... maybe travel, scratch stuff off our bucket lists. Just kick back , open a beverage and simply enjoy that beautiful sunset happening outside this evening. Kinda like an intense accelerated retirement yayahahahaya
So if you like to communicate via email , go to google And search , “ Australia mature online penpals” , at pen pal hub and thousands and thousands of them pop directly up .... the majority of them ladies over 50. Hey what you got to lose brother ? .... I strongly suspect that thousands of ladies in Australia would love to correspond with you ....right now !!!! It’s worth thinking about , at least. Great talking to you PT , later gator.
💪💪💪💪🌼🌸🦋🌻👍
Yes, but I am maybe a very temporary bloke. Here today, maybe gone tomorrow.
I remember searching many possible dating groups, plenty of ladies screaming out they wanted a man. I emailed the the very few who were located in my city and given them my contact details, and politely asked them to contact me so I could have a chat and willing to pay for the coffee, there was no response despite the fact that they had the right of posting their email through the dating site for free and maintaining the secret of real world identity. I am Patrick Turner, and I tried always in all groups to be that man. Its easy to prove I am the PT from Canberra living in post code 2602. I have no reason to fear. But the women seem to all have great fears and are so picky and choosy about getting involved with any man that when a man says "Hi darling, here I am, lets talk" they run away and hide. Its reality. Part of many older women's mind stays 25, the urge to have a man remains, but is a very dim candle, and not a fire of high desire that did exist at 25.
I concluded women like to feel the empowerment of attracting a man, but so many have such a frightful history of keeping a man interested. By 50+, all have lost most ability to have sex, so "vibrant intimacy" can't happen. My being quite desexed by doctors makes me more untouchable, a non whole man, and none of these ladies have really come to terms with the lessening of what they are, and the lessening of what many men have become, and no amount of posting online that they want a man will generate the primal desire needed to make old ladies sleep with old men. And sleeping or book-reading is all that's going to happen. And I have to get up for 5 pees a night.
Totally uncool, unsexy, OK, just leave it out. I see groups of old women at my cafe, all talking 90 to the dozen for an hour at their lunch, and no man to be seen, they just don't fit into their lives any more. But at 25, they want sex more than men. But between 25 and 50, huge changes happen to womens' hormones, they have usually had all their kids, and unless you want to travel OS on a cruise ship and pay for them to go with you, and have a magical personality that they'll tolerate for longer than 10 minutes, you ain't going to be the man they want. How do I know? experience with the last few ladies I tried to date before my EOS era began, ie, castration by doctors due to Pca. I do get along OK with my sister of 75, but she's a relative, we live 300km apart, so there's no interdependence. I still think a relationship might be nice, but she's more hopeless than i am. Her broken marriage and breast cancer soon killed all enthusiasm for any relationship. He husband went insane, he would not take his diabetes meds and would not change his list of awful habits. He's dead now. But she has more male friends than I do, but that too is not unusual. Women seem far more social than us men.
But she never hangs out at any online place. She's in a part of a big city, Sydney, where many she likes are in the art world or are old progressives left over from old days. That scene is not where I am. Those progressives were usually not my type, too promiscuous, full of left wing ideas that just won't work, so, better to not go near their parties, nothing to be gained.
Its not bad just cycling around, having a few male friends, even though none ride a bike. I always thought there would be 1 woman in my suburb of about 2,000 who might be OK to spend time with.
Nah, no such luck.
Just be grateful that you are alive.
Patrick Turner.
Well Patric , seems like you have things figured out ... what works for you at least. If that’s what you want then more power to you brother. 👍
Good luck big guy ... it’s been fun talking with you from down under. 😁😁😁🌻🌸🦋🌼
Thanks, I tried to put all the emoticons in a vase to keep them fresh for awhile. There are some I could eat. Is there a secret cure in those ones?
Patrick Turner.
Smiles and colorful flowers always brighten up a room and lighten up the day. Might be a little uplifting benefit in that. No cure for us stage 4 guys yet unfortunately.
Peace brother
Indeed, we need the brighter side of life, eh.
But I've been stage 4 since early 2017 when many bone mets showed in scans with more lymph nodes. 3 years later, my Psa is lower, only 2 active bone mets and no lymph nodes can be by the last scans 2 weeks ago. There may be no cure, but Pca has not bumped me off the saddle yet. Its all about getting time, and when nothing more can be done, well, we have to get used to that too.
Patrick Turner.
Sounds like you are having a great response to treatment and are likely to be able to hang on for many more years. How great is that ! Maybe we can hang on long enough for new treatments to extend us past our natural life span ...
For sure you have the good fortune be able to hang in there for more of the brighter side .... kewl !
Peace brother ✌️
Indeed men can live long enough to get new treatment theez daze
By 2014 I had read about trials of Lu177 and Ac225 and that all looked fabulous compared to chemo. But trouble was that it looked like approval was many years away, so it would not be available here in time for me. Well, In 2015, Theranostics Australia opened a clinic in Perth to give Lu177 to men who had chemo failure, and the Australian law is that if chemo fails, you may have a range of other things that does not yet have full approval. It seems that since 2015, TA has treated maybe 850men and they opened a clinic in Sydney about a year before I needed Lu177, and so TA became very experienced at what they were doing, and if a PsMa scan showed higher enough SUV for Ga68 then the Lu177 would work well for 70% of men, and side effects were much less than chemo. Hence when chemo failed to work, I went to get Lu177 exactly a month after 5th shot of chemo in late 2018, and although Lu177 was expensive, it did a lot more than chemo did, and did not disable me with side effects. Lu177 is targeted RT, the radioactive Lu177 isotope with short half life gathers around and within Pca mets or in PG. Thr radioactive Beta or Alpa particles travel 2mm max in tissue, but blast the cancer to bits. But it takes time to work, its a bit like smashing down a medieval castle with a big catapult and rocks. It takes time, and only so much can be done with each attack. The body then clears away the junk after each attack and next attack bashes further into clumps of cancer cells, and with luck some mets are entirely killed. Bit not all. I have 2 bone mets causing Psa to rise again but I might get more Lu177 when the time is optimal. But all my mets in many lymph nodes are not seen on scans now. I may still have many mets, but they mostly are too small to be seen, and I feel very well. Whoever wood have thought this fancy smancy atomic remedy wood ever work? Bloomin Ah Mayzing.
For those who Lu177 gives a not so good response, there are now FDG scans to throw light on whatever else may work. Nobody has said I need to have a FGG scan, maybe because I have not got much if any mutated or variegated Pca. Docs have not said I have such, so, I should be able to bomb the crap out of remaining Pca when it raises its ugly face above the parapet again.
Meanwhile, life goes on. Latest problem is that my 37yo vinyl pool liner has got to end of life. ppl say I have the oldest in Australia. That's because I took care of my pool for all those years, like everything else.
I've had 3 quotes, and a bloke nearly my age gave the best quote, for just the right sand color I used 37 years ago. I'll have that all fixed soon because swimming is excellent for spinal health. I doubt I will live another 37 years but I may get 10 more years. Hoo Noze, eh?
Immune therapy may become a lot better, and so might stem cell therapy. But I doubt EBRT or IMRT or chemo will get any better. Of course the ideal chemo would be where they inject much smaller amount that is routinely used, and a ligand chemical makes chemo molecules gather at cancer lesions in big numbers, just like the action of theranostic LU177. But I have read nothing yet that says it is even possible.
Chemo lasts about 10 days in anyone, but if chemo could be made to gather at Pca sites continuously with repeated small doses, the side effects should be far less, but the cancer would be attacked during the whole chemo cycle.
I take a bit of added Vitamin C, just in case it works, or aids my recovery after long hard cycle rides.
Maybe some good stuff on TV now, must rest after busy day,
Patrick Turner.
Sounds like you are doing great with the treatments you already have had , and ..... been hanging on quite a while since DXed as a result. Just doesn’t get any better than that for guys like us does it ? Looks like you have good reason to be optimistic to stay around for quite a while. That’s pretty Kewl .....
I don’t get more scans or talk , much, of future medical planning. I think they consider it rather pointless. I Miraculously escaped the jaws of death in October 2018 and am working off that as a base. My first oncologist visit included the hospice crew and I was strongly encouraged to go into hospice. Psa 1400 - 1600 , body Chemistry failure and mets spread in uncountable numbers to every bone and joint location in my body. I had a near miraculous response to ADT , undetectable psa for last 13 months , next test in two days. Visits with my oncologist consist of him slapping on the back , says “ your tests look great “ , see you in 4 months. Usually last 10 minutes or less. Last month he pulled up a chair to chit chat about food and brought up the “ settle your affairs and gather your loved ones “ talk again yayahahahaya. I just love the way that gives a person such a warm and fuzzy feeling.
Adt has put my cancer in chemical remission .... but is extremely debilitating for me .... I struggle to even put my paints on ...and walking just out to my pickup truck is an adventure. This morning it’s gonna hit near 80f ( 26.6 C ) and spring is in full raging bloom here. Been that way for two weeks. There are literally millions of fruit trees here .. so much fragrance in the air the pollen burns your nose. All the eucalyptus trees with bright red flowers and white flowered loquat trees in bloom too. Nearly all the heavily populated parts of California are entirely synthetic ... orchestrated by man ... it’d be a dry tumbleweed and creosote wasteland if we weren’t here. It’s orchestrated for show and it’s obvious when you see it. I’m gonna put my clothes on and take my truck to the car wash this Morning ... if I feel like I have some endurance left, I’ll drive down to a coffee shop and socialize with my friends that congregate there. That’s a big day for me.
I’ve heard of swimming pools with liners , but have never seen one. Here in my aging 70s suburban tract nearly every house has a cement swimming pool / hot tub. , only the lots with the larger model house don’t. Not enough room for a pool.
Pools are mostly decorative here as the water rarely gets warm enough to swim comfortably. People with pools probably swim six or eight times a year or so. It often gets well over 100f ( 37.7 C ) here for weeks if not months in a row but cools off so much every night ,
pools never get warmed up enough to be comfortable. Like a lot of deserts, it can be hot days and chilly nights . They all have big gas heaters but most people don’t waste the money. I don’t have the pool but I have a decent Jacuzzi in a canvas pavilion that both my wife and I use several hours every day. We can use that year round and we do. I’m teaching my wife how to maintain it ... she’ll probably hire a service after I’m gone yayahahahaya. Talk to you later PT , we should probably take this to messaging if you want to go on with it. Have a good one brother. 😁😁😁
Hi Kaliber, I for one don't mind publicly discussing what other ppl may feel are private matters, such as health details. And that's because I am not worried by the world gazing at me. They might even learn something. We all have our story. I ain't ashamed of mine.
It seems like ADT has come to your rescue in a big way, and that also happened for me, but I had a low Psa to begin with at 8 when the attempt at RP failed in 2010, and Psa dropped to 0.08 minimum. I had a pause to see if it worked in 2012, and Psa rose to 8 in 6 months, so I re-started ADT and Psa minimum after that was 0.2, so it seemed to me that if a man pauses his ADT and lets testosterone return for awhile, it feeds the Pca, and if when he re-starts ADT, Psa does not go so low as it was before.
So slowly but surely, even with no pause in ADT, its seemingly miraculous effect wears off, and Pca cells that are asleep grow more receptors for testosterone to be able to grow and multiply so that they survive with tiny amount of T made by adrenal glands. This small amount of T is not stopped by ADT or having balls removed. With very small amount of T in bloodstream, Pca learns or mutates to be able to grow with less T. To stop this, Cosadex, Zytiga or Xtandi are used to interfere with T production within the Pca itself as well as by adrenal gland. But I found thee add-on drugs to ADT didn't work for very long, and Psa was suppressed for 6 months with Cosadex and 8 months with Zytiga, but these times were typical for many patients. My ADT alone had lasted from 2010 to 2015, including the pause.
So maybe, and its only a maybe, your Pca will not suppressed forever by ADT, and Psa will rise, and if you had scans they might show you could be in more trouble, and that at least some of the many mets you had, or still have, will grow big enough to be seen in CT scans. A better type of scan, IMHO, is PsMa Ga68 PET/CT and this can indicate whether Lu177 might work or not. You see, after I had Zytiga fail, next thing was chemo, and by that time I had countless mets in lymph nodes and bones. But chemo did not seem to work at all. But I had had PsMa scans since 2016, so docs had very good picture of my cancer status, and they knew that Lu177 might work better than chemo, and I knew from reading about research, so I asked for referral to Lu177 doc and my doc agreed, hence the big drop in Psa and rise in my QOL as a result. I am still on ADT though, and all docs it would be very bad if I let T production re-start if I didn't have monthly injections of Lucrin.
My fitness and abilities to survive at 72yo are just as good as many other healthy fit 72 yo men who have a full amount of T in the blood.
But when I ride around town the only ppl who over take me are young men and women. I never see anyone my own age who rides as fast.
I swim every day between late October and May which are our warmer months. I have a system of pipes on roof for solar heating of pool water which works well to get water at 23C which is how I like it, not too warm, but not too cold. There are 3 months when the pool heating is not needed. Swimming is fabulous for anyone's health. We get very hot summers with mild nights, but in winter my pool used to get a layer of ice years ago, but average winter T has risen due to climate change so no more ice. Water T goes to about 12C, and difficult to heat, so I don't swim in winter.
The bicycle gives me far more health than the pool, but the pool still is worth having. I also need to fix it well, and maintain value of my house.
I don't have jacuzzi but a friend wants me to join Club Gen, a place where ppl go for gym work and hot tubs and a longer bigger pool. Might be good for this coming winter. None of these mild activities cure Pca, but it leads to sense of well being.
The Romans had well patronized baths where ppl could socialize and get cleaner than if they spent all their life at home which didn't have hot water, and had limited water brought by slaves. Romans knew little about biology, and ppl today would never use a public Roman style bathhouse, much too filthy, they want extremely well filtered water. Teaching anyone about how to use the simplex of plumbing for a pool and to keep its water clear is almost impossible I found. But I have technical mind, so its easy. Since I moved to this house in 1976, at 29yo, I have never hired anyone to do house maintenance. I was trained in carpentry, and knew all the other trades as well, and I worked in building industry for about 27 years, so I knew enough.
The pool liner replacement does need someone skilled, and I really don't want to have to struggle alone to do it, and I can't avoid the cost of new liner. I've had 3 quotes, and got a real good one from a man nearly my age who built the same type of pool 30 years ago, and the the liner is coming from same ppl who supplied it 3 years ago, cheaper than the new-comers who have higher costs in their businesses.
I can afford to pay for such things, and in years gone by I could not, hence DIY was the rule for all things, but I needed doctors for Pca treatment, and I don't mind talking to them, and their message is not always good, but but I have to hear the worst and get a plan going. The docs have got to know me because they have kept me alive for so long; I would have died years ago if I didn't have a good attitude to the medical ppl I met along the way. My oncologist needs a bit of cheering up as he grows older and gets grey hair, he deals with dying ppl all day, so he doesn't mind me turning up to talk and I'm in lycra, with positive attitude, looking like I have no cancer at all, very happy to see him, or the others at the hospital.
I must now do some work in house.....
Good talking, these telegrams we send each other are so cheap eh, eh?
Patrick Turner.
Hey PT ... I have no illusions about adt, I know it will wear off eventually... some people get several years out of one kind of adt, I wouldn’t mind being one of those people. 18 months on Xtandi is a good run and I’m at 14 month’s already. At this point it’s not the cancer that is My most immediate threat, it’s the severe reaction that I have to adt. Adt has caused my blood pressure , blood glucose and cardiac rhythm to become unstable and now I’m likely to die from stroke or heart attack more than PCa. Plus adt has nearly crippled me to boot yayahahahaya. I’ve been giving electric mobility carts fond glances of late. I don’t want to go that route yet because when the adt stops, my leg muscles could be so atrophied I couldn’t use them anymore. Don’t want that.
Scans wise ... what if my met load dropped from thousands down to , say, 500 or 800 or 1200 mets .... it’d be nice there were fewer mets but still far too many to waste a scan on. The met joint damage in my knees, lower legs and feet / ankles is dramatic when seen on a scan.
Or X-ray. The deformities in those bones is jaw dropping. Several of my spinal vertebrae have little cow horns deformities on spots where mets are , same in my pelvic bone too ( the most damage is located there )... all the joints in my thorax and nearby upper spine are deformed By mets too. Even if the mets are shrunk, the damage is done and isn’t going away ever. None of my doctors want me to look at the scans and have asked that I don’t as a favor to them. I’m a retired biomedical engineer and can read them pretty well .... they know that about me and want me to not worry about the damage as much as possible. I had a panoramic jaw X-ray before my last Zometa treatment ( next one in 4 days ) , my dentist said she thought my mandible joints looked serviceable, but I have little mets half the size of grains of rice spread all over my mandible.... some of them causing me toothache like pain in teeth that have had root canals.
I’m messed up pretty good and the adt is jumping on the bandwagon hard .... you know what tho, I’m taking a licking but still ticking like a Timex watch. Yayahahahaya I’m not going anywhere anytime soon , and considering everything ...doing pretty well . I can maintain my personal comfort pretty good most of the time and the wifey helps me get out and do things too. Life could be ( and has been ) a heck of a lot worse for me. I’m appreciative of that fact immensely. I was able to get dressed by myself this morning , drove my pickup truck and got it washed and waxed and spent 15 - 20:minutes in a downtown sidewalk coffee shop. Came home , undressed my self , took a nap and am in the jacuzzi writing this right now. That is one whopping big day for me lately ... I’m totally exhausted but filled with a sense of accomplishment at the same time. Very little painkiller intake today too .... life is good brother . I fully realize this isn’t going to last, but this is a good day today ( considering) ... how good is that ? I’ve learned to adjust my expectations and operate within my limitations ... and I still find comfort and hope in this screwed up life .... and mostly my wife is happy that I’m managing to hang on .... it’s all good brother. Happy wife, happy life . 💪💪💪👍👍👍
Hi Kaliber, I didn't know were already on Xtandi. It gives a bit longer time than Zytiga but nobody can be sure because we all react a bit differently to these drugs.
I can't identify any side effects of ADT with Lucrin now. At first back in 2010 I had some hot flushes, but that was all, because I clocked up big kilometers on bike. I feel it was exercise keeping my body from falling apart at 63yo.
If you ever did have Lu177, maybe you'd want more than 4 infusions which is average number. I know a man in Melbourne who had 7, and I was told one man in Germany had 10 and I saw the videos about Lu177 that were made when first Australian trial of Lu177 began in 2016 for 31 men. Most had high Psa, months to live, some were bed-ridden, but for one bad case where the PsMa scan outlined his skeleton because Pca was everywhere, the Lu177 was like a miracle, and months later he was able to get out of bed and his bones tried to heal as best the body would allow.
How any man's body repairs itself is never perfect, but it tries. I never heard what became of all those men the trial but some got years more life while some barely got any benefit at all.
Last Sunday I cycled 87km, and last Tuesday I did 80km, and last two days worked hard to walk around to make many measurements of my pool to make sure the man who replaces the liner has the correct dimensions. I am fully functional but biggest side effect of treatment has been chemo which affected my legs. Despite that my av speed on bike is back to pre-chemo days of 2 years ago, and despite lingering numbness, tingles, and inability to walk bare feet on gravel.
I am so lucky to not need a nap during the day, unless I have cycled about 80km
and have not much to do. Then I stay up later at night.
The Lu177 did cause very slight pain on first two shots at bone mets, some of which were pea sized in pelvis and a femur, but inside the bone, not protruding from it, thus not making my bones more likely to fracture. Pain did not last long, and I did not need pain killers. Between the shots of Lu177 I was able to do lots of cycling and in 3 weeks last year about this time I managed 960km.
We are all different, and most men don't need as much exercise as I do, 100km a week would do wonders providing they kept calories low, and this is the real hard part of existence for most ppl surrounded by places selling food these days.
I did find that when I gave up all red meat in about 2015 that pain from osteo arthritis much decreased. I then gave up chicken and there was betterment. But recently I had stomach blockage and lost 8Kg in 11 days, and was very weak and a bit anemic after, so I have added red meat to diet, about 120grams a day only, and lean meat, and so far, no arthritic aches yet, and I have re-gained lost muscle and av bike speed has gone back to where it should be, and I can cycle 85km, just one coffee break after first 27km when I usually go real hard, then do the rest a bit easier in the warmer summer temperature. Eggs and fish and all manner of vegetables and grains are OK though.
I had both knee joints replaced 2 years ago because of bad knee genes, and while Psa was at a low of about 1.0. That meant lots of rehab mainly by myself until I could cycle again at about 3 months later. At 6 months later in mid winter I re-joined the group I cycled with in 2012 to 2014, and I went faster than all my age.
Side effects of Zytiga made that impossible during hot weather due to heart rate bothers. So I cycled alone in early summer mornings, I was on the bike at 6am and back just in time by 9:30am. When I had the chemo during following year, its effect on all places where there had been cut tissues for new knees made leg side effects that much worse, but I managed to get better after chemo. I am kinda use to being laid low by something, then have to raise myself up yet again and be cheerful to all the ppl around me.
Its good that you have a wife, and that she's happy, and a stayer. I was never blessed for long with women's company in life, so when I go to hospital for something, its like being in a good marriage. A nurse might attend me and then ask "Is there anything else you want now Patrick ?" Well, its sometimes hard to keep a dry eye, and of course I'd love to be 30 again, but of course I never went to any hospital or met any nurses when I was 30. Being 30 was the time of feeling invincible. One fellow commented, "Youse is the man they could not root, shoot, or electrocute..." and all i could say "I'm flattered...." There good parts of being 30 that any man should retain, but other parts he should throw away.
I never wanted a Maserati, a mansion, or room fulls of trophies or fine art works.
A bicycle will do.
Patrick Turner.
PT ...
Cycling was one of my favorite hobbies as well. I just sold my entire ebike hobby about 6months ago. My bike was the BPM F-35 fat tire , 750 watt - 1 HP , 26” mountain bike and my wife rode the Addmotor Motan fat tire folding bike , also 750 watts one horsepower.
I had a nice small motorcycle transporter that fit the hitch of my pickup truck. My city and most California cities have extensive hike and bike trails that cover scenic areas and have stuff like toilets , water fountains and benches sprinkled all over. Beautiful and well groomed park like settings. My wife’s little folding ebike seemed considerably more peppy than mine did and her battery lasted longer and went faster. Fat tires are Notoriously difficult to maintain as they are seemingly paper thin. You have to air tape the rims, Remove the tubes and fill them with 9 oz of stringy raw rubber sealer to keep them from becoming punctured and flat nearly every time you ride.
I had a small Honda generator that could charge two batteries at a time ... only took about 3 hours to get recharged and ready to ride again. We took the ebikes to stunning places like Monterey , 17 mile drive , coastal highway , Yosemite , Kings Canyon etc to ride. ( all nearby here ) We carried an extra battery and rode out until the first battery was exhausted then rode back on the spare battery. An average ride was between 25 - 40 miles total one way ( 64 km ) and nearly effortless. You dialed in the amount of a workout you wanted , anything from strenuous to no effort at all. After about 2. 1/2 to 3 hours my butt would get very sore and I had to take a break.
The BPM mountain bike is Big and tricky to ride tho, and even experienced riders will fall mounting or dismounting it from time to time.
Of course Lupron causes your bones to become thin and you get Zometa to fix it. Problem is I have big mets on my spine and left femur and long term Zometa use causes brittle bones , especially known to cause femor cracks. Its the trifecta of bone risk. Cycling would have been major stress on those bones and extremely risky. Same with my Harley Dyna Super Glide motorcycle which I also sold two months ago.
I have a friend that also had PCa and didn’t know it ( he has passed now ) , he was on his $40,000 Screaming Eagle Harley driving down the Main Street here. He stopped at a traffic light and stepped off his bike and let that stunning hog just drop over on the ground. ( $1000s worth of damage ) ... then he fell over on the ground and the ambulance came and got him. several of his vertebrae had collapsed from met damage and he never rode again, plus spent months in recovery after his surgery. I’ve thought a lot about buying one of those new three wheeler ( 2 in front 1 in back ) sport trike ebikes . A used hydraulic wheelchair lift from Craigslist that fits my truck hitch would be affordable as well. Not much concern about falling with one of those, but there remains the spinal and left femur concerns.
I was an avid kayaker too. My wife and I loved mountain and ocean kayaking and kayaking dense wetlands for the wildlife experiences. well planned ocean kayaking using the tide flows makes for nearly effortless and exciting ocean adventure. I loved Moro Bay kayaking a lot. I have great pictures of all this in my Facebook albums. Over the years I took dozens and dozens of people for salt water and marsh kayaking adventures ... it was great. It was pretty exciting to see a 1500 pound elephant seal swim under and brush your kayak I can tell you ... yayahahahaya
😁
Hi Kaliber, I can see you have had a life inspired by natural wonders, but limited by bone strength.
I have been on Eligard then Lucrin since 2010, but bones seem OK, and mets never got bigger than pea sized in a femur and pelvis. I'm now 72yo. If the met is no bigger than a pea and in soft part of inner bone it does not weaken femur bones much, but bone strength lessens with age, and ADT makes bones less dense, and thus weaker, and taking stuff to stop bones getting thinner / weaker / less dense can cause brittle bones.
But last year during March and in the middle of getting Lu117, I did a lot of building work on my house for about 5 weeks and had no bothers with bones.
Maybe I just ain't old enough for weak bones yet.
I rode 72km this morning OK, and felt very well, and my bike is Cannondale race bike with 700C x 23mm tyres but with Brookes saddle, which prevents saddle soreness. At 42, I could ride 300km in an autumn day, some of it in dark, with lights, but not now.
There's no suspension on the Cannondale, and spine gets bumped around a lot, but I always feel better after a good ride, so Pca and ADT have not yet destroyed my QOL. I have not yet turned to getting an E-bike, ie, low power motorcycle. Legs and heart and lungs still work fine.
In my 20s and early 30s I had many motorcycles, BSA, Matchless, Honda, Bultaco, HD1200, and BMW R75/5 was last one that lasted the longest, and was the best blend of power, speed, handling, brakes, comfort, quietness, and tendency to attract a better type of dame who liked men who rode motorcycles.
I'd love an AJS 7R 500cc single, but really, its not a practical thing to own.
I don't much care about visiting the bush or camping out, or travelling through stunning landscapes. Maybe if I had a partner, but as a single man for last 35 years I kinda never went to nature much; its around me, nearby, I cycle through bits of it often, and distant nature does not need me to disturb it.
When I raced on road bikes in my 40s the courses were on roads in Brindabella mountains here and plenty of big hills to cycle up then go down at hair raising speeds.
I been there, done that, and now have no need to compete. I overtook about 5 ppl today, but nobody overtook me, so I can't be all that slow.
I will do my best to keep Pca from ruining my bones by not letting mets grow big.
It may mean getting repeating doses of Lu177, and after I had 4 shots last year the doc said that if Psa rises again, I might be able to get more, and maybe with small % of Ac225 added because that's real good to work on bone mets. In weeks ahead, a decision will be made for this repeat dose of nuclide. Its unlikely I'd need 4 shots.
After that, and if I can't have any more Lu177, maybe I have Ra223. To my mind, nobody should let bone mets get bad before taking action. Bones are the support structure your life depends upon, and nobody can afford to let then crumble before Nature intends.
Patrick Turner.
We are about the same age PT, I’m 74.
Those were some great motorcycles, classics. I’ve owned many of the same ones as well.
It sounds like you have additional good treatment possibilities and are maintaining your physical health. You are living in a completely different adt world than I am , seems like.
Mets wise, I have a met in the middle of my left femur your can run your hand down my leg and it’s quite a noticeable lump there. My left knee is easily twice the width of my right knee , seriously deformed by the mets in that joint and can be seriously painful at times. Like I said before , I have mets in all bone joints in my body ... similar to a massive case of disfiguring arthritis ....you can look at my hand and foot joints and see the lumps and bumps all over the joints. You can feel the noticeable lumps in my rib cage where it meets the spine and at places along the ribs. Lumps on my spine up near the skull, basically all over. It’s a whopping lot more than just pea sized stuff in my marrow. I have a sizable bulge sticking out of my abdomen right below my left rib cage, I thought it was the beginning of a rupture but turned out to be a tumor. I have places all over my abdomen , near my navel where there are masses of mets that when you touch them generate a very unusual and extremely unnatural feeling ... not like pain, but nothing like anything I ever knew existed before ... but you know it’s bad . It’s very freaky and unsettling.
I was diagnosed very late , so late that my first recommendation for treatment , immediately after diagnosis , was going directly into hospice because of my extremely high psa ( 1400 ) failing very bad body chemistry and massive met load ... indicating I was near death.
Considering everything, seems like I’m doing amazing , like a new lease on life ... or a nice extension of life anyway. Definitely happy about that. I’m looking to hang on for years and years yayahahahaya .
Later brother 💪💪💪✌️✌️
Hi Kaliber, Let us assume you had PsMa Ga68 scan that showed most if not all mets had high uptake of Ga68. Let us suppose you had a mix of Lu177 and Ac225, and maybe 3 or 4 infusions, and it reduced active mets down to 1/10 of present size, then you'd still be left with a pile of dead bone your body must dispose of. How much your mobility would be affected is anyone's guess, but it probably would take months before your deformities reduced in size. But all my soft tissue mets could not be seen on followup scan after 4 x Lu177. Bone healing was seen to be underway.
Psa was about 1.6 last August but went to 0.32 before it began to rise again.
So I had many bone mets, some were pea sized in larger bones with Psa at only 25.
Unlike many men who seek Lu177 treatment, I had a much lower Psa than most.
I had low Psa 8 for the amount of Pca they found in 2010 at docs attempt to surgically remove PG. It was inoperable.
After Zytiga failed in 2018, Psa rose to only 12 at beginning of chemo. The chemo did not have to do very much, not much Pca there compared to someone with Pca 120 or 1,200. I am glad my oncologist and I both tried to jump onto Pca before letting Psa go higher than 12. Chemo was not entirely useless. Psa was 50 after 5 shots of Docetaxel. But then between end of chemo cycle and start of Lu177, Psa fell to 25.
Nobody successfully explained why, but I am glad I took no notice of this and proceeded to get Lu177, and I had support from my oncologist.
The chemo was said to have made my Pca sensitive to Xtandi so more PsMa was generated so more Lu177 would gather at mets, so after beginning Xtandi right after No 3 Lu177 shot and for No 4 shot the Xtandi helped Lu177 work better.
It could be that now my Pca has become resistant to Xtandi, like it became resistant to Zytiga. This is the trouble with these add-on drugs to ADT, they don't work forever.
Pca seems to be like a bad case of weeds in your garden, and they have to be pulled out or sprayed with poison and they keep trying to grow back again. If I didn't do much and let Psa go high, Pca might become like weeds that cannot be dealt with.
But you really have a huge problem to face each day, no doubt about that.
If I had not had any benefit from Lu177, I may have been forced to use different chemo, all with worse side effects, and I might have been in a hospice by now.
Best of luck,
Patrick Turner.
You say "I would like my testosterone back again, but it would fuel new growth of my Pca ."
Not "would fuel" but "could fuel." Maybe. And where is the evidence for that? Most evidence now points to uncertainty. Some men are indeed getting TRT after ADT and are not seeing the type of progression that has always been asserted would occur.
That is not to say it CAN'T occur, because the relationship of high-dose T to PCa is still poorly understood and seems to possibly vary greatly among men, depending on their specific cancer. So it would be a risk, but not as high-risk as previously thought.
Trying to sneak Testosterone back into your body which has Pca is about the most risky thing I can think of. But if I now quit ADT, its also highly likely my balls would not return to be able to make testosterone again; they atrophy like other things dependent on T, like Rodger, and bone density. My present sudden rise of Psa after having Lu177 could be that Xtandi I have been taking since last April is failing to work, thus showing that my Pca is still able to be controlled by hormone deprivation or blocking, until drugs doing the function stop working. So tempting fate by stopping ADT or having injections of T is just too risky, and as I have explained, my physical health at 72 is far better than many other men my age who have a normal amount of T.
I have heard all about BAT and it was only doable before men got bone mets, and the pain was severe if they had bone mets. It seemed to work for awhile in some cases and a trial was done at John Hopkins in Baltimore and funded by US Army, and we just do not hear about BAT being such a wonderful choice treatment with CRPca but before bone mets have come. BAT seemed to be the only way manipulating hormones could actually kill Pca cells. Some men did well, other worse, many in betweens, and I could have done it DIY by getting illegal Testosterone online like body builders and shooting myself up once every 3 months. Not for me.
Once past having got bone mets, don't use BAT. Years ago, pausing ADT was thought to be better than continuous ADT, but I had 2 pauses and nadir after didn't go as low after each pause, so Pca learns fast to get by with less T, and I saw nothing to be gained by pausing, but on second pause, Psa went up but T didn't, and so there was no return to feeling the extra energy with T. I had to re-start ADT.
I could not read anywhere that any other action other than what I did would have worked any better to kill or slow down Pca.
Patrick Turner.
You changed the subject. I wasn't referring to risks of side effects, but to risks that "it would fuel new growth of my Pca ." There is no evidence that T-therapy causes definitive growth of Pca, even if it might cause a rise in PSA.
Of course doing T-therapy has risks. So does stopping ADT. But then, so does STAYING on with ADT.
My point was not that there is no risk, but that the evidence is not conclusive that all T-therapy is very HIGH risk. The evidence is not there. It is simply assertion and opinion, which of course we are all entitled to.
If you explore more of the literature going all the way back to the 1940s, you will find examples where high-T not only does not CAUSE pain but actually RELIEVES it.
You don't sound like you are late-stage castrate-resistant with bone pain already. Even WITH asymptomatic bone mets, the point would be (perhaps not for you) to do T-therapy BEFORE you get there. And the point would not so much to get Rodger back into one's life, but stop the more serious effects of ADT like bone weakness, etc.
Don't construe this as advice, by any means. Just trying to dispel the myth that T-therapy ALWAYS = BAD, for sure . We just don't know.
Sorry to change subject if that's what I did. All I really know about is my own experience with Pca, and when I paused ADT in late 2012, Psa went from nadir of 0.8 to 8 in six months, and T went from below 0.5 to 20 in a normal range of 8 to 38 units. All my sexual capabilities returned along with average speed on bike. It was like being re-born, but I hated having the rise in Psa that had a very fast doubling rate. Docs all all thought I MUST stay with ADT, and they acknowledged that the EBRT I had did not do much for me. There had been no conclusive trials at that time that indicated BAT would work and no doctors would do it for me, ie, shoot me up with big dose of T once every 3 months, with hope that because Pca receptors for T increase when T in blood goes low, the sudden high dose of T then overloads the Pca with too much T and Pca cells die. Dr Sam Denmeade at John Hopkins Hospital supervised a trial later on, but BTA has not been adopted as an optional therapy.
My bones are now probably more fragile than they ought to be. Being 72 would do that. I don't walk enough to stop it.
But this morning I cycled 69km and got a good average speed I have not seen since this time last year when I was in good shape.
I saw maybe 50 other cyclists getting around, nice morning for a ride, but not one overtook me. OK, the sum total of who / what I am is presently OK as it could be under present conditions and with the history I have had. Maybe another injection of Xgeva would be a good idea, and I'll mention it to Prostate Cancer nurse in update email I send to her occasionally. Well before 2012, I had read many stories posted up at chat group sites which became defunct after about 2012 because the men running them had Pca and got sick and could not administer the group and keep it working. There were so many stories of men just going down to Pca, diagnosed too late, and some had horrendous stories about side effects of radiation or surgery or chemo. There were no stories of remission. I learnt to ask my doctors to keep my Psa low. But that's what I did and it may not suit others for whatever reasons.
Patrick Turner.
I don't know the exact answer because everybody's body reacts differently to each treatment. So it is quite difficult to get a perfect answer. I was just curious to know that has your doctor suggested to take the lupron? if yes, then what is his opinion on this, have discussed with him?
I have been on ADT for nearly 6 years (Zoladex 3 month depot injections) but after the first year only have one injection a year, usually by then the PSA has risen to mid teens or low 20's.
My diet and various anti cancer supplements keep the PSA down for 6 months, but then it starts rising. Side effects are tolerable, the Budwig Diet that I stick to has improved my general health so much that apart from loss of strength I am fitter than when first diagnosed in '09, PSA 79.
Lots of exercise, bikes, swimming, cutting ~ 8 tonnes firewood a year, growing vegetables, bushwalking, landscaping. Since joining U3A (University of the third Age) I am enjoying life as much as I ever have, even at 87yrs.
I still have the tumour, Gleason 7, less what a TURP took out, but am not trying to kill it, just make it tolerable, and by keeping the ADT shots to a minimum, reducing the damage and side effects. I am seeing an Oncologist soon at the request of my Doc as he is not sure about this intermittent dosing (my idea) but from what I have read, the end results are similar but side effects more tolerable with I.D.
I wish you the best of outcomes, Julian
POMMYB...thanks for your contribution to this site. I am 60yo(the new 35.?🧐)...I had open RP in march 2016... (4+3..N0 MO)and I am now in week 2of salvation radiation....my PSA had creeped up to 0.46.....I feel great... I try to eat healthy at least 90%of the time... I never sit still during the day...either doing the gym thing or walking the two hyperactive beagles for an hour and a half every night. I have every intention of making it to 87 and beyond....medical science is making significant progress every day and in five years there will be a whole new set of options available to prostate cancer patients to prolong our lives...with quality we hope...so I remain optimistic. Please continue to share your experiences ..it is an inspiration to at least me personally and gives me hope that even when I eventually succumb to some overwhelming event that chokes the last breathe out of me. that it will certainly not be prostate cancer...I wish you a continued long happy and fulfilling life..Thanks.Steven Peña
Hi, Could you tell me your diet and what kind of anti cancer supplements keep your PSA down. My dad has PSA 12 at the beginning . After one injection firmagon it went down 0.9. He took the last one one week ago. The docteur will change it into Eligard 6 months. He has a lot of flaches. The docteur gave him a medication
But he refuses to get it. he needs some herbal to get red of them. Any ideas........
You are blessed by Nature to be restless and physically busy. I'm a bit the same, but I cannot walk much because of a bad ankle from minor crash on motorbike at 19 - and that taught me to look where I was going.
But I am now cycling 200km a week, and I that seems to keep mind and body OK while docs work to keep Psa low. Dx was in 2009, at 62, Gleason 9, inoperable. I've had ADT more or less ever since with EBRT + salvation IMRT, add on HT drugs, then chemo, and last year had Lu177. Psa went to 0.32 last November but is rising again now, I wait a little before now before deciding what to do. Meanwhile surviving OK.
Lord Noze how long I'll last before I start to un-live.
Thanks Patrick Turner for sharing your story here...it gives me lots of reasons to ditch any pessimistics thoughts of doom and gloom...I expect to continue to read your posts here for a long time to come..
And we all want you to enjoy getting to 100 years old. We all want the best for all others here.
Patrick Turner.
Thanks👍
I have been on Lupron for 14 years with one holiday in 2016 of six months.
Spent 4 years on Zoladex before that. Dating Erleada now for 15 months as well.
What side effects? You begin to wonder if the tiredness, discomfort and lack of zeal are SE’s or just getting older (64 yrs).
Im on lupron and earleada too and let me tell you it "aint just the fn age" im tired of hearing that..if 45 is the new 55 and 55 the new 45 then 65 should be the new 55 and i feel like im fkn 80....lupron and earleada ...these guys who are exceptions maybe they never did any real work in their life....or maybe they have excersised ad nauseum their hole life....i was banging nails pouring concrete ,fixing kids cars,etc living a middle class life, and still am i retire in april and hope to be able to enjoy it...these drugs take away muscle im living proof...do all you newbies....the day they tell you you ha apc...buy a treadmill and some dumbells..you might delay the inevitable...
I worked hard as a builder from 1966 to 1993, when my knees wore out. I fixed all my cars and made my own furniture and generally was a non stop working person except when asleep. But in 1980s and 90s I found time to race on road bicycles in a local club, and was cycling 300km a week quite often. I found time for being with women, I married one, but they kinda all could not stay, as none liked the work part and commitment part of any relationship, at work, or at home. Instead of running around the world to "find oneself"I have lived in the same house since 1976, and I never wanted to travel overseas except for a 2 week honeymoon in NZ, and a trip to Bali alone, where I saw how third world ppl could be very happy with almost nothing.
When knees got painfuIl I stopped building, trained myself in making / repairing audio sound gear, and that lasted 18 years. I got knee ops which allowed me to re-start and continue cycling and this week at age 72 just did 227km, and this morning did good time for a favourite stretch of road 26.2km and average speed 25kph. I have now cycled about 105,000km since my Pca diagnosis in 2009. My answer to having to live with ADT was to keep active, not because I have to, but because I enjoy it.
Sure enough, I would be 3kph faster on bike if I had not been on ADT since 2010.
But 2 months ago I had a small intestine blockage because it became adhered to scar tissue from unsuccessful attempt at open RP in 2010. I lost 8Kg in 11 days during my stay at hospital, and docs operated. I am recovering well, but still am 6Kg less than when I entered hospital. Much muscle and fat was broken down by my body and it went down the drain.
But I am getting faster on bike after that, proving I can grow a new lot of muscle to replace what was lost and thus go fast again. Even without any testosterone.
I cycled 74km this Sunday morning, and I saw maybe 30 other cyclists out and about and going in opposite direction. There would have been just as many going in my direction, but not one overtook me. I overtook a few. I am on ADT and 72yo. I must admit, I don't do much house except getting brekky and dinner, but because I live alone and nobody else makes a mess, my own slightly perpetual mess does not bother me. I have too much other interesting things to do other than housework.
I will be having more treatment for Pca, but what sort and when is not knowable yet.
A whole lot of things were supposed to make me fatigued, fatter, duller, and less motivated but it has not happened yet.
Patrick Turner.
Been on Lupron off and on, mostly on, for 9 years. Solid for the last 3 years with xtandi.
All the usual SE hut without it I would certainly be gone and then I would have missed out on my grandkids.
I hear that brother 👍👍👍
My MO at MSK has told me that there are a small percentage of men diagnosed at Stage IV who has received mono therapy with Lupron ( doubtful but may have had RT ) for more than 20 years . No discussion was had related to cormorbidities or quality of life issues but he did say they had tolerated it well . Must be blessed with good genetics .
Hi Riverside. I just had my 6th shot (six months) two days ago so it’s been 2.5 years for me (I’m 53). My MO told me in day 1, visceral fat gain, bone density loss, and lean muscle mass loss will always be my enemies with ADT. He was right so I’ve been on a dedicated diet and exercise regime ever since (still eat ice cream regularly...I’ve got to have some indulgences!). And I’m now finally on bone strengthening meds as my osteopenia is knocking on osteoporosis’ door. I may be delaying the inevitable as some of these posts suggest but I’m also three years older and maintaining great quality of life. My MO is keeping me on the same regime for the forseeable future because it is working well for me in all the important ways. Hang in there! ✌️ Doug
7 years every 3 months until I no longer needed any treatment. The larger question, your alternative is what? Castration, death, cure?
GD
My uncle has been on Lupron for 18 years. Just recently became resistant and started on Abby that brought his PSA back down to 0 for about 6 months now. He did have to have heart bypass along the way and then 2 weeks after Abby he had heart arrhythmia and had to have stents put in. He did not gain weight - always a skinny guy. He says he felt fine all along. Were the heart issues related to Lupron? Probably.
I am in year 13 of continuous Lupron. All side effects are tolerable when I realize how much I have enjoyed living the past 13 years. I have never had depression so that is not a problem. Hot flashes are a way of life for me and since adding Enzalutamide 14 months ago they are a bit worse. Impotence is a loss but at age 79 my wife and I agree we would rather be alive then having occasional sex.
Chemo 2 years ago was much worse for me but it ended and my head cleared. We enjoy every day and realize they are all gifts. We have an electronic picture frame scrolling on our kitchen counter filled with all the joys and memories of the past years, especially the past two. We smile every day and appreciate our great care.
I am off to exercise class now and tonight to hear a favorite symphonic piece. Life is as good as you make it.
Hi, been on Lupron for about 7 years now with one holiday for about 6 months when taking Ra223. Had all the SEs on the box but tolerated it quite well if you like being 70# overweight and no libido nor equipment. But heres the thing, last year I started BAT and all the nasty side effects reversed even though still on Lupron. Currently on Enza rechallenge and although T levels back to castrate PSA is again declining and I feel pretty good (not 20 mind you). Doubt this answers your question but it says not all of us totally decline on lo T and it reverses within weeks of Hi T injections. There is much to be learned here but I think the role of T has been under estimated and certainly its mechanism which leads me to think that future therapies including T and perhaps other adjuncts ( end point inhibitors for one) are well worth watching as they develop. By the way Im 77 and still feel like 77 except some brain fog, I lost 45# on the BAT it was easy,
This is just a general question. Everyone here seems to assume they'd be dead without Lupron or some equivalent. How do you know this is true? Have you ever spoken with people who had high Gleason and PSA scores who chose not to take this drug? Do you know of any cases where people with such scores declined this intervention? (It would require quite a number of cases to qualify even remotely as a scientific comparsion, wouldn't it? )
Clawdette, My Gleason scores were 6, 7, 9 and 9. As I said previously Lupron gave me many side effects among them were some of the worst ones. I decided to stop the shots after 3 (nine months). I read all I could find concerning intermittent use, vacation from Lupron, etc. After stopping Lupron my PSA has remained from .01 to 0.25. It has been over four years since I stopped Lupron. Everyone is different and might have different results but I am happy with mine. Many places I check have encouraged Lupron vacations. If you try it and PSA goes back up then you can always get back on it if you choose.
this is good to hear. I think its great you took a vacation from Lurpon to see how your body reacts. It is a personal choice, but I agree one will never know until they try it. If PSA rises, then one goes back on the Lurpon. Thank you for sharing. After 12 months of Lurpon, Im doing my owns research because it seems that all docs just want to do the sure thing, not taking into consideration how it affects the patient. God Bless!
Thanks, 4042. I had a good friend whose life was made complete hell by that drug - and it sounds like most have had a similar response to it. For me, that raises the question: 1) How do we know how much overall good such a clearly toxic drug has even if it results in a lower PSA? 2) Even if it helps with cancer, what about other health issues such as one's cardiovascular system? The studies I've looked at suggest the ALL CAUSE MORTALITY doesn't go up for castration drug-users. You might die of a heart attack instead of prostate cancer, but is that truly a triumph? My third question is: How do we know that Lupron actually works over time against prostate cancer? To know that answer, you'd have to compare it to those who haven't undergone this treatment. Another issue I haven't seen acknowledged here is the basic challenge to the anti-testosterone theory. Increasing numbers of doctors and researchers are questioning that testosterone is the culprit in prostate cancer. After hearing their arguments and evidence, I would suspect an estrogen-testosterone imbalance - in particular, the negative impact of estrogen imbalance in older men. After all, it's not a young man's disease, is it? If testosterone were truly the cause, you'd think there would be hordes of young men with prostate cancer.
You don't hear from the people who chose not to take Lupron. They are mostly deceased.
Indeed, not only are they questioning if testosterone is the culprit in prostate cancer, some are now wondering it it can help be THE CURE and are renewing the idea of alternating ADT with high-dose T in what is called "bipolar ADT."
The idea goes back to the 1940s but lost favor to continuous ADT, which I plan on NOT doing when I start. I will do ADT for a year or so and then take a vaca, come hell or high PSA.
I frankly am not worried about a flare in PSA so long as the cancer itself can be shown to be relatively dormant, or at least slow-growing. I could care less if it sticks around, so long as it doesn't kill me or bring me pain.
I can't help but wonder: if the bone scan didn't tell me I had a few mets, how long would it have taken for the mets to tell me they were there? Two months, two years, or two decades? One of the frustrating things is not having good ways to know exactly how aggressive your cancer is, or will become.
Thank you Nalakrats. At what cost; quality of life? I ask this as I am at crossroads to continue or not doing ADT.
in reply to alangeorge
Some have used lupron for 12 yrs or more. We are different .. The muscle and bone loss Just go with the turf .
in reply to alangeorge
It is a high cost to pay . There for we need good reasons to endure . I’ve been on constant adt five years now.. Good luck 👍
Does anyone have experience treating Lupron Induced hot flashes with Black Coshosh or any more natural remedies? Thank you.
To Life!
The other side effect I don't see mentioned in this thread is how continuous Lupron, etc., might contribute to the progression to castrate-resistance. I know intermittent ADT shows no obvious survival benefit, but shouldn't it help delay that progression?
Progression to castrate resistance seems to occur at around the same rate with continuous and intermittent ADT.
Intermittent ADT does offer the advantage that vacations from the treatment can offer long periods of respite from the effects of ADT for some men.
PCa does vary in its response to ADT, some men proceed to castrate resistance quite quickly while others go on for years.
When we understand more about the genetic basis of prostate cancer we may understand why.
I think one part of the reason that there doesn't seem to be a huge advantage to IADT over CADT is that quite often the periods of "on ADT" are very extended relative to the short vacations of "off ADT."
Some (like Leibowitz) suggest a very intense ADT/chemo regime as initial primary therapy for about a year, and then trying to stay off ADT for years by using Proscar and anti-angiogenics to control PSA from rising too much. He has also tried the "bipolar" approach of high-T-therapy with some success.
I feel if I expect to live for 20+ years on ADT that it will have to be IADT. Perhaps CADT can get that , too. But my only real-world reference for extended survival with mets is Paul Steinberg (author of A Salamander's Tale) and his faith in IADT.
I have been on Lupron a little more than 3 years, with 3 months injections every other 3 months. 3 months on 3 months or longer off. when psa begins to rise its time for Lupron. Unfortunately have all the usual side effects. I have found that exercise and physical activity goes a long way in reducing the severity. During my breaks 100 mg Viagra helps little roger come back from the dead for encore performances. I am going to be 79 in May so old age also contributes to my decline in libido. I kid my friends and wife be professing to be a Eunuch when under the influence. Sad to say you can wear it out eventually from abuse and overuse ahh but the fine memories. In closing my doc says more than likely will die of alcohol abuse before the cancer, I love a good glass of wine or 4 to 6 daily. On a serious note in my opinion exercise and activity are the best way to deal with the side effects. I work out every morning for an hour and 1/2 plus play pickle ball 4 to 5 times along with golfing a couple times a week. I recently turned down radiation treatment so as not to deal with those side effects as I am doing just fine enjoying a life of quality and vigor if I was younger perhaps would consider. (one of poss side effects of radiation can be Bowel Incontinence ! NO THANK YOU ! hope this helps someone out there dealing with this men only malaise.
Well said !
I started Lupron in 1992 via recommend from group of CA drs of intermittent treatment, went until 2017. Now use Eligard (much easier on patient). Newbies should consider the total blockade theory with finesteride, and casodex. Drive PSA down to near historic levels then go off all except finesteride until PSA goes up to predetermined level (when setting your restart PSA level remember to double test # for finesteride actions). So I rode this plan for 25 + years, Some group decided that casodex not necessary with Eligard and BINGO I’m into the metastatic fight in less than 3 months.
Do not get me wrong this has been an unbelievable ride. I’m now 79, married for 56 years to my soul mate and still in LOVE.
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