I just wanted some advice. We saw the radiologist yesterday to start a treatment plan for my partner.
We had so much information that we forgot to ask him to elaborate on something he said. He said there is no research reported benefit from being on ADT for 18 months as compared to 6 months to date. In addition he said that while on ADT, my partners PSA levels would not be properly measured. How will we know if the radiotherapy has worked (5 days a week for 7 weeks)? His urologist had told him to get a PSA test every 3 months and a PET every 6.
Thanks in anticipation.
Maria
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Filotimo62
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You are rightly confused - it is because you have identified significant gaps in our knowledge about the optimum duration of ADT when used with salvage radiotherapy (SRT). Here's an article that tries to sort out the research on this topic:
As you can see, the optimum duration depends on his pathology results, his PSA at the start of SRT, and his Gleason score. Because there isn't a lot of definitive research, other than using it for at least 6 months in many cases, a lot of judgment and discussion about patient preferences has to be part of your decision.
You cannot know if the SRT was curative until after the ADT is over and his natural testosterone levels return to normal. So PSA and testosterone levels can be checked in the interim just to make sure his ADT is working, but PSA will not be a useful indicator of the SRT effectiveness until afterwards. (and a PET scan will likely be uninformative as well). This waiting game is just something those of us who've had radiotherapy learn to adjust to.
Hi Filotimo, I had Gleason 9, 9 out of 9 biopsy samples were positive, Psa 6.3, and PG was found to be inoperable 4 mths later when open RP attempted, with Psa at over 8.8. I was then put on ADT and given 70 Grey EBRT after 6 months when PG volume was reduced to 1/3 former size, so smaller target for EBRT so less side effect damage for when EBRT was done. At time of EBRT the Psa was about 2.0 and at end of ADT after 2 years was about 0.08, and I was hopeful.
The only way to find out if it worked was to quit the ADT and see what Psa did, and my Psa shot back up to 8.0 in 6 months when testosterone came back so I was back to square 1 and I asked to be looked after by oncologist, not urologist to "see me out" because it looked like the treatment with EBRT had been a complete failure. I later found that if Gleason is over 5, EBRT gets less effective and is 90% likely to fail if Gleason is 9+, so I had a long fight ahead.
I probably should have got Brachytherapy, BT, which was insertion of up to 100 tiny radioactive pellets to PG so that up to 150Grey could have been applied to my PG, but in 2010 the docs said ADT plus 70Grey or EBRT would work. But they were quite wrong. But had I had the Brachytherapy, I'd probably have become totally incontinent within a few years but that has not happened and I am still fine. BT was very expensive in 2010, so I took the cheap EBRT, free at our public hospitals.
Anyway, after the EBRT +ADT had failed I went back on ADT, Psa fell to 0.2, then over 4 more years slowly crept up to then increase faster to 5, so I had more IMRT and Cosadex added, and this gave me suppression of ADT for about 6 mths and same thing happened, so next drug was Zytiga that gave 8 months, then same thing, Psa down then up again. Then I had 5 chemo shots which failed, Psa never went lower so then I had 4 x Lu177 shots and now Psa is below 4.0, and I still don't know how long that will last, and I am running out of certain options likely to halt the cancer, but since diagnosis I have lasted 9 years. Many don't make to 5 years. Every man has a different history of up and down with Psa and whatever treatments are used, and there are very few who get a remission.
One man who was a customer of mine said he had the same EBRT with 70Grey + 2 years ADT and said he was OK after 10 years. But maybe he had a weak form of Pca, ie, not aggressive like mine, so he was a lucky one. I have known a few who had RP, and Psa then went very low, but after a few years bounced right back up. This is often what some cancers do, you get treated, then you feel you might have beaten it, but it comes back to threaten you again, and then this is the thing that is most likely to kill.
I saw a woman on TV say she had spent a million dollars on her Brca so far..... but still enjoyed being alive. One of my sisters has Oa and was typically diagnosed way too late and after 4 chemo treatments she died within a year after the surgery. My dad died of melanoma at 60 when there was no cure, or anything to delay it. Pca often gives a man time to try many things one after the other like I have, and Lu177 became available in Australia 3 years ago and its so far been good for me but I don't know how long before Psa will rise again.
During all this time I have had many scans. About 6 x Psma PET/CT scans at usd $500 each, and no Medicare rebate. I am also now on Xtandi, but that's covered by Medicare so costs aud $6.30 a month only, like the Zytiga and Cosadex did, and my initial radiation cost nothing at public hospital but the later salvation RT at a private hospital cost aud $26,000, but Medicare paid $12,000. The Lu177 has cost aud $38,400, and no Medicare help, and I need a another Psma scan soon to see what results have been, and maybe I have a 5th shot of Lu177.
Its not over yet.
Unless an RP or EBRT gets all the Pca at time of primary treatment, then Pca progress is sure to continue, and only time will tell if any treatment has been successful. I don't know what % of men get a remission after RP or RT, but may don't get remission and have a long or a short fight ahead which they all to often lose. When I knew my intitial therapy of ADT + EBRT has failed badly, the oncologist said there was not going to be any cure for me, so I asked how long did I have and he could not answer because time alive varies. I said 2 years to 20 years. I was then 62. I'm 72 now, and maybe I have 2 to 10 years, nobody knows, and treatments have come along during the last 9 years which were not available at my diagnosis. I don't know what might be there in 3 years time.
But beyond say next year when effect of Lu177 wears off and Psa goes up again there are other things like radium 223, and then a range of experimental things where the chance of anything working is less than 50%. I might buy some of those and if I get so wrecked by side effects that life is not worth living, I'll have to call it quits and decide to get palliative care, and I hope the opiates keep the pain low. Getting cancer often means that ppl have to come to terms with their possible end of life, and that is not easy for many. I don't have any partner, and I did not have kids, so nobody other than myself is upset that I may not live long, so my end will be easier to cope with. But during this long battle so far, I cycled over 110,000km, ie, I stayed fit as I could, positive, but also aware of unavoidable reality. I worked for 3 years after diagnosis when I was eligible to retire to get old age pension that was huge relief. I had savings, and it does not matter than I spend that on cancer care. I doubt I will ever experience any love from anyone, but that does not matter, nobody except my mum really ever loved me so I am used to surviving alone. I've let myself grieve for the loss of having a real old age, and when I have to go, I will, without a fuss, or any drama. I had a good life, better than most others on the Planet.
So, be positive, but you need the best doctor you can afford. In Melbourne they are doing trial of using Lu177 as initial treatment instead of RP or EBRT + ADT,
and maybe its the best thing where a man is diagnosed with a Gleason 9 like mine and where there probably was a lot of mets already seeded around my body which did not show up in scans until 2016, 4 years after the initial EBRT and ADT. ADT is never a cure for Pca ; it only puts most men's Pca to sleep for awhile, and while asleep they remain alive and Pca cells divide to make new Pca cells, old cells die, like all other live cells in the body. But Pca cells mutate a bit at each generation, and you get some which make their own testosterone and these Pca cells live and grow faster so up goes Psa, and the risk of killing a man sooner rather than later. ADT only gives a man time to think about what next might be used.
I sure do hope your dear partner gets a fix from whatever is decided upon, but you need to be open minded about it, and I hope love overcomes the challenge ahead.
Thank you Patrick. It sounds like you have gone on a long and arduous journey and my thoughts are with you. We live in Adelaide SA and have a great team of doctors. Helps that as part of my qualification I did 3 years of Biology at Uni but sometimes knowing too much can also be a problem My Partner is 56 and very fit - he wont give up on this. We have so many plans for the future that we are working through with a 6 months hold while he has radiotherapy and chemo as well as ADT.
Maybe no Lu177 at Adelaide but there's a Lu177 trial going on in Melbourne Peter Mac, it would be free, maybe your partner would qualify to be a patient. I'd make inquiries if I were you.
I gave up on having any plans 9 years ago. Just day to day, never knowing when I will unlive. But then I have always been fairly happy about where I am, so I seldom took any holidays, let alone move house, since 1973. Had a honeymoon of 2 weeks in NZ that was nice. Wife got fed up with all things and left within 18 months, and so there was never anyone to enjoy holidays with or any plans for anything, so I just made customers happy with my work, and that was quite enough for me. Its a cold winter type of day here, but I'm quite OK, like many others who are OK, and not planning to get out of here asap like another lot of others here. If somebody is happy right where they are, they might not be any happier if they moved elsewhere, let alone if they went on a big cruise at huge expense. If I travel anywhere, I like something to be worthwhile to get, so I stayed in Melbourne 5 weeks in 2016 to get a full course of salvation IMRT to PG and two small mets and had a nice time and spent most of it editing my website; my knees were so bad I used a mobility scooter to get around. I stayed at Cheshire-Ryder place in Ivanhoe, its a cheap place to stay for ppl getting medical treatments from all around Oz. Cost was negligible in bedsitters for 2, they had cars to take patients to various hospitals, and it was good to chat with others who often had far worse problems than my own.
Hi Patrick. I've been wondering when you would add something as one of the other members of the site told me that you were another person in Oz and I didn't have your full name to check out what you were posting. We're in Sydney. You mention you've had 4 Lu177's our specialist seems to think these are only for men with very advanced PC but the oncologist we saw at a different hospital to check to see if my husband was suitable for a trial seemed to indicate it was really a matter of choice. He's already had RP removal and radiation and now on Lupron which he is tolerating very well and doing the Man Plan which is great especially for someone who has been totally inactive for a very long time.
I'm living alone in Canberra, and I had skype appointments with Dr Lenzo or his helper Dr Macfarland at Theranostics Australia and I got the PsMa scans in ACT. Then I travelled to Sydney to get the Lu177 now based at Waratah Private hospital and TA is administered by Genesis Care. If you want to know if your man qualifies for Lu177, your GP or specialist in Sydney would have to refer your partner to Dr Lenzo. There's a hefty consultation fee but its worth every cent, and you'll be sent a big lot of paper work to show medical history so TA can assess if there is a benefit to be worth paying for.
So far, so good with me, but I can't predict the future.
There is a trial of Lu177 combined with enzalutamide at St Vincents Sydney run by Prof Louise Emmett, who has huge knowledge on Pca cell behaviour. The ppl running trial would be able to tell you if Lu177 would now be effective, and would also probably tell you that the success depends on results of PsMa Ga68 Pet / CT scans which are available for about $700, also not covered by Medicare. Trial would I think be free. I'm on Lucrin monthly ADT injects, and on enzalutamide, and this is paid by Medicare, but the 4 x Lu177 infusions and PsMa scans were not, and were about aud $40,000.
Thanks for all that info and locations etc. We went to St Vincents to see if Ron was eligible for the trial Dr Joshua is doing using 2 drugs (don't know names but they are common, older style drugs usually used for something else). He wasn't eligible but this Dr took his latest PSMA scan (like the one you mention) to check with the doctors at the hospital to determine if Lu177 would be useful. I thought the doctor said this was about $10K an injection. We didn't get a report but maybe will be able to ask our specialist on August 1 when we see him for an appointment. Ron is having 3 monthly injections of Lupron..only 1 so far ...yes and like you say no charge and is taking part in the Lupron Man Plan exercise program for $5 a session. Fortunately as yet he hasn't had any side effects from the injection and about a month until his next one. One day a time seems like the best way to go on this journey. Hopefully the positive outcome you've had will continue.
My RO told me that the reason for ADT is to keep the PC cells from replicating while the radiation kills them. He also said that he wasn't sure how long that takes, he wanted 24 months, but seemed ok with 18 too. He never considered 6 months for a G9.
Many thanks for that info. Seems logical to keep the little buggers from breeding while the radio and chemo tries to knock them off. My partner has a Gleeson 8. PET showed it just in one lymph node which has been removed but his PSA went down to .69 so it may be elsewhere. Having another PET this Friday before he starts treatment (Radio, ADT and after a 6 week break from radio, Chemo).
It’s true that you don’t know what worked when you have two treatments at once. But adt purportedly helps RT be more effective with higher risk PCa. If Testosterone starts to rise above say 20 you know it’s stopped working and if Psa starts to rise you know neither were effective. So you need to monitor both and when on adt it’s good to get a full CBC to monitor you’re other bodily functions as well.
Some PC patients go on ADT therapy continuously while some may go on it intermittently. There are many factors to consider in making this choice, including, but not limited to whether the PC is localized v. whether it has spread. When I was on ADT intermittently, my PSA was checked every 3 months and I often had scans every 6 months. Now that I am on ADT continuously, I have scans less often. I believe intermittent ADT has been shown to be comparable to continuous ADT for those with localized PC.
But- I believe the data indicates that those with metastatic PC will live longer on continuous ADT. (You can look this up yourself in respected publications online.)
Of course, there are may other treatments to consider depending upon the patient;s particular situation (i.e. age, overall health, Gleason score....). Other treatments to consider may be: (docetaxel, zytiga, provenge, radiation, prostate removal and others).
Filotimo or philotimo is a Greek noun comprising of the words philo (verb translated as “to like” or noun translating as “friend”) and timo (verb translating as “to honor”). It is hard to explain, impossible to translate in one word in any other language and so commonly used among Greeks that it is somehow believed that you are actually born with it and must stand up for it all your life. And just because filotimo represents a way of life for Greeks it includes ideas and virtues such as honor, justice, courage, dignity, pride, self sacrifice, respect, freedom, gratitude and hospitality.
I was born in Greece but live in Australia. Filotimo is a way of life for Greeks and the worst insult you can give a Greek is to say "you have no Filotimo". Its like saying you don't have any integrity and are not a person. The opposite of filotimo is dropi (or shame). You can bring dropi onto yourself or family by your actions. My partner who is a Ozzie (Australian) now uses the filotimo word all the time. When someone does something bad he says "they have no filotimo!!".
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My Partner is 56 and very fit - he wont give up on this. We have so many plans for the future that we are working through with a 6 months hold while he has radiotherapy and chemo as well as ADT. 
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Rising PSA after radiation and ADT
PSA Went Up After Start of ADT
