Hi everyone hope today is better than yesterday..in 9 months I've had Lupron,Eligard and Trelstar changed doctors and they all have their pet Meds, side effects are pretty much the same..My question is which one is the best ?
My psa is 0.07 and holding gleason 9 and cancer contained in prostrate..the Trelstar injection is the most tolerable to date.
thank you
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preciousbz1
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Lupron and Eligard are the same drug, just a different name. Trelstar is a different chemical but it works the same way, they all amount to chemical castration. They drop your testosterone to castrate levels and that produces the "side-effects"...It also controls prostate cancer for a period of time..Eventually PC learns how to live and thrive without testosterone..
What the heck?? Your cancer is contained in Prostate only? When will they be treating that with Brachyboost or surgery?? Tookad?? Something?? Get the cancer now while you can...Godspeed....
As for the ADT--they all suppress testosterone ....while Firmagon was shown to have less cardiovascular effects, I am not aware of any superiority between the products for ADT. Good luck....
had radiation already, just looking for the best ADT..if one is better than the other.
thanks
You have the possibility of being cured, but you got to have the right doctors in place, tell us your location and someone here will offer recommendations.
You are in the prostate cancer "Goldilocks" moment, don't waste it....
This forum has discussions regarding stage 4 metastasis, so information here will confuse your situation. There's other forums that targets your condition specifically.
Of course, this site with the many forums is amazing and helpful, please get aggressive, you got a great chance to kick the cancer!
There's no mistake, plenty folks here are great and amazingly helpful. Should have said there's "another", forum, that focuses more on your situation. That you may want to visit.
Obviously this forum can be helpful as well, like the brachyboost tip you got.
Please stick around here too, so much to learn, all the best!
No research I know of has regression calculated the level of circulating tumour cells that anyone at any stage of the disease may be producing....we are all subject to spontaneous mets and the rub is that some of us with very high numbers may actually respond longer to those who are capsular contained. You're in the right place asking whatever interests impresses or bothers you. Everyones welcome including wives daughters sons or literate mutts...just ask NYM....i'm sure he consults with that beautiful pup of his..mines gone otherwise i would.
I was advised to switch to 0.1 patches, 9 of them when the Lupron started failing. I doubt Lupron or its other names will last very long. I then cut back to 2 patches 6 months later. Got a PSA reduction back to zero. That was 12 years ago, under Dr Charles E Myers (retired), and the drugs he added to the patch were Leukine and Ketoconazale + aspirin as blood thinner and hydrocortoone as hormone supplementation. Today Keto has been superceded with zytiga. I got my longest remission ever 12 years ago. You are a gleason 9. Hit it early.
Also what they dont tell you about the patch, if you run a lot of them, is that it can trigger a sudden interest in a creative activity. For me, I suddenly got interested in Ballroom dancing, and got to the point where I was doing competitions. I won a $5000 raffle for private dance lessons from pros at my studio in Pasadena. I was spending 15 hours per week in lessons, practice, social dances, and sometimes competitions in Los Angeles. I lost weight and got in excellent cardio shape from that activity and it contributed to my long remission and enjoyment of life. Estrodiol Patches = better joint health, better memory, osteoporosis control, better heart if taken with a blood thinner, no hot flashes, feeling better overall because you at least have some estrogen when you have taken away all your testosterone.
I am the same. RP in 2002. RT in 2003. Cassodex since 2012. Lupron 3 months ago. I have 6 bone mets. Current PSA .37. Just wondering about the patch. Who prescribed the patch???
My oncologist prescribed it. Before that, Dr Charles E Myers (retired) prescribed it. Easy to get this prescription. Need to set a goal on what you want to do. If it is for osteoporosis, you can do a half 0.1 patch (I do that now) and do Prolia, or xgeva if there are mets. If it is to switch from Lupron to the patch, you want a higher dose and combine with other drugs. Only a good doctor will be able to recommend what else to combine it with. Baby aspirin essential to protect from stroke.
Thanks - my doctor at the Mayo clinic is very single focused on Lupron. even though they are great hospital I still am always interested in everybody else's opinion. They are very traditional on their treatment.
Precious, ADT drugs you mentioned are T production suppressor. They do this primarily by signaling the pitituary glands to tell the gonads (testicle) that resulted in T dropping to castrate level. In medical term, they call this “GnRH agonist”. There is another drug call Firmagon that impacts the gonads directly to stop T production, and this has a faster effect since it stops the hormone production that creates T, thus it is called “GnRH antagonist”. The result is the same, T drops to castrate level, the side effect as really the same, when you don’t have T, you suffer hot flashes, loss of libido, etc, etc. With G9, though, it seemed odd that he only had 28 radiation treatment puzzle me. There are basically two kinds if standard radiation for first line treatment, seeds implant or external beam. The external beam gold standard is IMRT (proton or electron), and they are typically 44 treatments (an improvement from the old 40 which were found to be less effective, can’t remember the study that caused this change). Another variation of EB is SBRT, and this is typically a high dose RT and is given in 5 treatments. In any case, I suggest you consult another Oncologist and get a second, or even third opinion.
The newest standards for EBRT are for 3GY doses x 28 treatments. It appears as effective as the traditional 44 or 45 1.8GY treatment. it saves $$ and time/visits. That is combined with 18-24 months of ADT. The radiation is given in a general pelvic pattern initially then with a boost pattern directly to the prostate. It does not include seeds. With modern equipment this is as effective as the seed boost.
My question is why is your MD using ultra-sensitive PSA testing. That's not normal for radiation treatment. If yours is under 0.10 it's considered undetectable. Your PSA sounds fine. How long are they planning on you being on ADT? The latest studies show 18 months equally effective to 24 or 36 months.
And for the brachy boost fans, it's superiority was true when compared to older EBRT treatments. That's no longer true with advances in EBRT treatment and equipment. Newer studies show equal effectiveness.
It seems Mr preciousBz1 had a Gleason 9 at start of his Pca treatment. So did I, in 2010. Pca tumour was inoperable, surgery attempted, but abandoned, but no mets were found after taking local biopsy samples. No mets could be seen with standard whole body CT scans that look for mets. I had standard 70Grey EBRT. I also began ADT, but had a break after 2 years to see if this treatment was successful, but Psa went from 0.08 to 8+ in 6 months, and I was back to square one so I have been on ADT ever since, plus I had Cosadex and Abiraterone then 5 x chemo shots at each time the Psa lept up to about 6 as each treatment failed. My first PsMa Ga68 scan in 2016 showed PG was hot with Pca and two upper chest lymph nodes, maybe 2mm dia. I had the two mets given 45Grey IMRT plus 31Grey to PG, but a year later, 2017, bone mets and many lymph node mets were found in another PsMa scan.
Docetaxel was the greatest failing treatment I had, with Psa at 12 before and 50 after 4 shots, so I asked to be referred to the doc giving Lu177.
Psa dropped from 50 to 25 in month between last chemo shot and first Lu177.
I've just had 4 x Lu177 shots and have blood tests in next few days plus a No 6 PsMa scan to review just where I am.
Lu177 reduced Psa from 25 to 4 at last blood test but nobody can ever assume Psa will stay low after whatever treatment you get and nobody can ever assume they have no mets based on having low Psa after initial treatment.
In the case of having a Gleason 9 or 10 at diagnosis, then there's a 90% chance many mets have already seeded around a man's body. The ADT works to supress the Pca at PG plus the mets, and in my case it took 6 years before mets showed up when scan method came to Australia in about 2015.
So I believe my mets began before diagnosis and following the beginning of Pca at PG maybe in 2005, when Psa was about 3.
I had a low Psa, but high amount of Pca, so action was not taken until Psa went to 5, and then it was TOO LATE, spread had occurred, and one thing was certain, there was to be a long expensive fight to stay alive.
So I think Mr preciousbz1 is at the right chat group for advanced Pca.
If Mr preciousbz1 were to get Brachy therapy now, he may have a few considerations.
One. There would be a large number of gold radioactive pellets inserted by some big needle to PG, so there will be multiple stabbings of PG which has already had EBRT so his PG could haemorrhage badly because radiated tissue is very slow to heal and stop bleeding.
Two. There is a possibility that the insertion and cutting of PG tissue and bleeding will spread Pca into blood stream and cause a big second wave of mets.
Three. There are now probably many mets, and these will continue to grow and it is usually impossible to apply BT to these mets, so systemic treatment may be the only thing able to halt all of the Pca, until it mutates to find a way of outwitting whatever the doctors can do.
Systemic means chemo, but in my case with nuclide Lu177, it is targeted to gather wherever Pca is found, so radiation damage to healthy tissues is mostly avoided.
Pca is a disease where successive treatments cause Psa to go low, so a man feels he's winning, but its all too temporary, and Psa then goes up and we all know how that feels, the unwanted finish line seems to loom closer.
Most men I have known with a Gleason 9 have had to fight for many years and learn to expect to have shit happen along the way.
I've know some who have lasted 20years+ after diagnosis and some only 3 years and those who pass away sooner rather than later may have a sudden big increase of Psa that is so fast that tumours form and threaten organs and bones faster than any treatment can work. And sometimes the mets do not make Psa, the Pca has mutated into some other unique type of Pca and nothing is known that might treat it, and it may not be seen in scans.
Nobody knows how long I will live on, but I have had a battle since 2009. I cycled an average of about 11,000 km and had a good quality of life over this time. I wanted to stay fit the whole time. But the initial EBRT had X-rays going through my hip joints and I suspect the cartilage has worn out prematurely according to latest X-rays. So pain at night has been part of life since last February, and I am too scared to cycle. The last ride of only 40km caused bad pain after for 2 nights.
The combination of mets in pelvis and a femur plus the osteo arthritis has curtailed much of what I might otherwise do, but I am still not taking pain killers, I am letting some pain occur so I know what is happening.
Time is The Great Dismantler. The older I get, the better I was. I'm 72, live alone, try to fill in days with electronics craft work, and enjoying the wonderment of each passing day, but I cannot live forever.
You may find ppl here occasionally post about the passing of their father, or their husband, this is a cancer group, it is to be expected.
I find being aware and sharing the somewhat gloomy reality of what is happening to many men here and myself allows me to not fall apart mentally between now and my use-by date, a still uncertain thing.
There are more treatments I can try after Lu177 has done whatever it can do, and next week a decision must be made to have a 5th shot of Lu177, wait and see for awhile, or prepare for Ra223, or DNA analysis for Brca2 gene for which a few chemicals have a chance to work. I could have Cabazataxel, a supposedly good chemo after Docetaxel has failed. Then there is Carboplatin, and one other chemo and each has increasing side effects of causing damage all over a man's body.
For now, maybe you will have many good years without Psa rising alarmingly. Enjoy those years,
Thank you so much for your reply which will help me on this journey. I'm glad that you are doing well and God Bless you with many more years during this struggle..
OK most of the time, but unable to walk more than 200M willingly because if I do, pain increases at night. So today for example, I felt OK to drive 2.5km to get lunch at a café, read newspapers, then chat with an old acquaintance for an hour, then drive home. Spent 4 hours sitting down to sort out about 2,000 resistors left over from my R&D sessions for numerous electronic circuits I designed and built since 2012. It will take at least one more day's work. So, as long as stay doing sit down stuff, I feel quite well but there's a nagging feeling that I ought to be able to cycle 30km across town and back after a coffee, which I used to do 3 times a week during most weeks since about 2007. I heard on the radio during a science show that millions of blood cells are made in the bone marrow every few minutes. I have a Pca bone met in right femur where I guess blood cells are being made. It was hard not to think that this bone met is making cancer cells that are pouring into blood stream and seeding themselves in thousands more mets, not all of whom could be treated by anything, so I could understand that perhaps docs are not telling us why someone treated with Lu177 only gets a mean life extension of 14months, which I assume includes the time when Lu177 treatment began. On next Thursday my doc for Lu177 will confer to decide whether a 5th Lu177 is worth doing. Meanwhile, there could possibly be thousands of microscopic mets which will grow up sooner or later but while my Psa is quite low. You can have a low Psa, but have a huge number of mets, and when they all try to increase together the Psa can rise alarmingly fast, and overwhelm any attempt by anyone to stop their progress.
Anyway, when I have to attend appointments for scans or doctors I have to park about 0.5km away and there's no way to escape the walk, so I use Canadian crutches to ease the load on my hips, plus give me exercise to upper body which seems to luckily be able to work hard to help my legs, ie, I become a de-facto quadruped, not a biped.
I expect to see my Psa go quite low to maybe 0.4, over next few months while having Xtandi after the Lu177. Then I expect a fast rise of Psa when mets that have been bred by the mets begin to grow up.
I could be very lucky, docs could do DNA analysis, tell me what chemicals would work best, then accept the chemicals and wave the Pca goodbye into the sunset.
Oh yeah? C'mon, that would be hugely lucky. And next Thursday I would not be surprised if Psa is already rising, and Xtandi is having no effect, or making Psa rise faster that if I had had none. I knew a man who died 3 years after Dx and ADT failed in 3 months and Cosadex made Psa go from 7 to 40, then 10 chemo made Psa go from 40 to 2 for 2 months then slowly rise, then he was found Brca2 positive, had PARP inhibitors and in a couple of months Psa was 400+ and then a mets appeared in his liver which did not have PsMa avidity so he could not have Lu177, and docs completely lost the battle. He just got so sick and died.
He was supremely unlucky, such a nice guy, lovely wife, teenage kids, but his time was up, before turning 60.
So nobody can assume anything about Pca and its future progress.
I am also still waking up 5 times after going to sleep at about midnight.
Sometimes because of pain so must seek a new position. Winter here, so I have blankets arranged to regulate temperature by having one thick blanket over all of me, then one folded to go over lower legs, and another over body above waist to stop temperature of knees going warm because a knee cap aches, and the othopedic doc just would not say why last week when I talked to him. Well, his body language told me he was writing me off and that he thought I wasn't worth giving a new hip because cancer would take me out, so now for first time a doc is assuming I'll die soon, and plans for better quality of life are vain for me. He told me to come back in 6 months before he'd consider putting me on the waiting list. This doc replaced both my knees in the second biggest public hospital here in Canberra. While we chatted he rubbed his eyes and squinted into the screen showing my scans and just seemed to be unable to answer my questions, and I could see that he's really burned out since I last saw him, and prefers to do as few patients ad possible. I will get a second opinion from the dominant and biggest public hospital, bound to be a younger eager surgeon there at the top of his game.
I may live 5years. Hip might cripple me if nothing is done within 1 year. I'd like to stay out of a wheel chair, and not have temporary wheel chair ramps installed to my house, and have to buy a mobility scooter.
This is positive thinking, but some docs think I am stuffed, and ask what's the use of helping me last longer?
We all know the ethics that should be practiced but nobody can count of those ethics being practiced; sooner or later, someone will tell me not to fight any more. So if ask me how I generally feel, then here's your answer, and I bet so many would have to face similar issues. Painkillers will dull my mind, and there are side effects...
But the café at lunch was pleasant.
I adopted a neighbour's cat. There was a couple in their late 50s, early 60s in house next door, and had a grey cat, Storm. But the man got lung cancer and died in 18 months after a truly terrible sequence of failing treatments. There was a huge mortgage on the house land the lady could not pay it off, so 3 months after man died house was sold and she moved to her son's rented flat. There was nowhere for cat, and lady's daughters didn't want cat or could not have it, so Storm was offered to me and I accepted. A cat is a low cost animal to feed, and undemanding, but is having trouble re-homing, but with gentle persistence I am getting her to accept my place as home more and more. But I think Storm will outlive me, and when I go, she will be put down because nobody would find it easy to take her in because compared to other cats I have had in distant past, Storm is not a good fighter for her territory, and slow to accept change, a bit autistic I think, and prone to depression, and although she and I have said hello these past few years, as my house grounds became her territory, including the roof, she'd never linger long inside my house, and never let me pick her up, and often growled and hissed at me. Just like so many young women I knew did in a past life when I was young, and uber marriageable because I was good looking, and very practical useful sort of bloke and with a house he'd paid off by age 37, and without any kids. So I grew very use to repeated rejection by the females I met, but all that is another long boring story of loveless endeavours despite the initial wonderment of the ladies enjoying the finest bedroom performances they could ever find, which of course mean nothing in the long run.
So Storm has her life extended because a bloke with cancer has taken her in, and one who ignores her hissings and growlings, and likes to find just what food she likes best. It is the best arrangement for living company I can put around me right now. Women are basically from planet X, none want anything serious to do with a man in my situation. During time getting chemo I met one man whose wife vamoosed soon after his diagnosis. There are a whole pile of ppl who just can't handle the part of marriage for "And in sickness and in health, unto death do you part" After the "pause from men" aka menopause, many dear ladies become allergic to anything male. There is a good side to this, my getting sick with Pca without a partner means that I ain't a burden to anyone else. Docs don't mind, ppl like me generate their income.
Despite lack of females in my life, I am still 125% hetero and have a wonderful female dentist, far better than any bloke dentist I have known. Shielas can be fabulous doctors, and all the better if males treat then with utmost respect, they get to address the fine details like I did when I worked as a building contractor and later a electronics repairman. I like ppl whose understanding of what they do is outstanding. This is where there is wonderment to be found.
Tonight, Australia's Ashley Barty might win the French Open Tennis.
What a gal !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I'll try to get around to that. I have a second hand camera from 2003 with card, and I must rig a usb adaptor cable to download pics to lap top. Cat is plain grey F, short hair, skinny, slightly autistic because she's finding change so difficult.
Foggy am, but cat came inside to eat, then discovered an old couch in my lounge room facing north, then morning sun came out, a whole lot better than staying in the freezing shade of the carport.
So she is adapting fairly well. We all have to do that, and be our own servant, and now I'll hang out washed clothes on line, then go to lunch after some time in shed. It will be a nice day later. Acupuncture I had on Friday has my hip much less painy last night. I could say Its like having nothing wrong.
Our gal Ashley Barty from Queensland won the French Open last night in two sets. Such a goer. She looks a bit like a much more - better version of my ex-wife who flounced off in a fit of pique in 1978, unable to explain why, without knowing herself, fleeing reality of existence, like so many did at that time when they were gifted with Youth, but determined to stuff it up, and think all the world is bad and horrid, but they are right. OK, I gently closed the door behind her, and muddled my way to the present, riding on what skills Nature bestowed upon me to make ppl happy with my work. and because I had no kids, yours don't have to bid against mine at the house auctions where here the prices have forced many young folk to delay breeding or remain childless.
Maybe a glass or two of shiraz, or some CBD oil would make most grumpy old men much less grumpy.
You know, whether we like it or not, we are all shuffling along in a queue. Unlike other queues in the world where ppl wish those ahead would drop out so they could get ahead, in this queue the blokes in front are asking ppl behind to please go ahead.
Just consider that humour and wonderment could only be what the meaning of life is. And millions have had a far worse life than me.
Everyone is welcome here. Obviously, this community has a focus on more advanced disease strategies and our Prostate Cancer Network community is focused on earlier stages, but, we are all here to help everyone. There is lots to be learned from all of our Prostate Cancer communities and you are welcome to join one or all.
I re-read all of the above posts and I am totally confused (except for mine) on what happened. "Who knows what evil lurks in the hearts and minds of men?" "The shadow do".
The post suggesting Precious wasn't welcome here has been removed. Despite my not being stage 4, this is an immensly useful group, it gives us information on what works or perhaps didn't work from people who have BTDT. That's quite valuable.
That was my post, which should have been worded better, mentioned being in the wrong forum, there's other forums that are discussing his situation specifically. It was based on my experiences, because I took advice from "Active Surveillance" forums (not HealthUnlocked), which was a mistake, had a chance for being cured, but now stage 4 (Advanced).
j-o-h-n, replied to you, because you know me better than that.
Anyway, tried and convicted by my peers here, so time to break from this place...
Nope.... I insist you post here... We New Yorkers have to stick together. Come on, your a fun guy who knows his shit.... If you don't post anymore I will personally fly up to Boston and Kill you!!! If I recall correctly (and that's hard for me to do nowadays) you developed Medical coding systems. You're a smart guy therefore you make up for my dumbness. WE NEED YOU HERE. Again if you don't post anymore, then I'll have to kill you and then kill my twin brother in a botched suicide attempt.
The admin, has instructed me to how to delete my account, I'm not welcomed for an post that was a mistake in prose, can you imagine this, this not a place for me...
Our administrator has established biased, Darryl you are too biased, time for you to move on, this site is too political, cancer has no ideology preface, we all want live, your time has passed...
George please don't go. You and your lovely wife have been with us for too long for you to go because of a little thing like this. I had a whole post make it 5 minutes before it was deleted. Ask Lulu how many posts and replies he's had deleted. Don't unfriend all of us because of something as silly as this. Don't make us sad.
Hey John, if your a Russian when you go to the bathroom and Fin fish when you come out, what are you while you are in there? EUROPEAN. 😀 good luck and good humor, to all.
This is a great forum, from which you will derive much benefit and receive genuine and empathetic support. I joined when my husband, who has a head and neck cancer, began treatment with some of the same drugs used for prostate cancer. The posters on this forum have a great deal of knowledge and experience to share and are extremely generous in their support. I am sure you will experience the same. Very best wishes.
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