I was diagnosed in summer of 2016. PSA of 12 a Gleason of 9 4+5 robotic surgery in late August Gleason downgraded to 4+3 lupron and casodex PSA rising spring of of 2017 37 sessions of radiation. Back to lupron PSA starts rising never more than 0.2. Although doubling time less than two months. I found a wonderful oncologist. Started on zytiga and and lupron since May this year some side effects. Muscle pain weight gain PSA 000.6 going well. Oncologist suggest going with lupron and stopping zytigas. No Mets revealed, my question is it better to continue to keep Mets at bay IE zytiga. Or just go with lupron. Wait and watch PSA moving upward, and address. With a treatment.When the time comes. Oncologist says there two schools of thought on treatment of a low PSA as low as mine. What do you think. Thank you all.
in zytiga limbo. : I was diagnosed in... - Advanced Prostate...
in zytiga limbo.
As your doctor says, there are two schools of thought without any evidence comparing them.
My gut, for myself, would be to stop the Zytiga with the goal of delaying the onset of resistance to the drug. If it doesn't work and PSA continues to rise then you can quickly go back on the drug.
This is nor meant to be a recommendation, just to share what I believe I would do if I were in that situation.
Joel
Thankyou
I don't know the answer to your question but, if you do quit the Zytiga, I like Joel's idea that if the PSA continues to rise, quickly go back on the drug. What that means is, get frequent PSA tests, e.g., every two months, so you'll know if things are going south before they go very far.
Good luck.
Alan
Thankyou
With a 2-month doubling time, you need treatment.
The most recent evidence shows that for non-metastatic, recurrent men like yourself, compared to Lupron alone, intermittent therapy (9 months) with Zytiga + Lupron gave better PSA-free survival (28 months vs 21 months), allowed good testosterone recovery (within 13 months), and had longer PSA-free survival after testosterone recovery (14 months vs 9 months). There was no difference in hot flashes or fatigue reported for the two therapies.
meetinglibrary.asco.org/rec...
So it looks like you get a longer vacation if you stick it out with Zytiga.
Hi Costarica61, in 2009, I had a Gleason 9 with 9 positive samples of 9 taken.
Docs could not proceed to remove my PG after opening me up, so they removed seminal vesicles and 2 lower lymph nodes and took more biospy samples which all had no Pca. I began ADT, and apart from 2 pauses for 6 months each, I have remained on ADT with monthly injections.
Psa at attempted op was 8.8, and Psa nadir was 0.08 and I had standard EBRT over 35 sessions with 70 Grey. In mid 2016 I had rising Psa and had PsMa gallium scan showing lots of Pca in PG and also two positive lymph nodes each side of oesephagus. I had additional 31Grey IMRT and was given Cosadex as well as ADT with Lucrin. PG + lymph nodes wer given IMRT.
Psa went down to less than 1.0, then rose and so in second PsMa in 2017 some 12 months after first, the number of mets had increased and included about 15 bone mets.
I began Zytiga and got 8 months of Psa suppression, and this year in May the PsMa gallium scan showed countless bone mets but not much else happening in soft tissue organs within thorax.
So when did the mets begin?, ie, when did the Pca at PG spread to bones? Probably way back BEFORE 2009 while the tumour in PG was growing from something tiny, maybe say 2005, with a Gleason 5 score, but with Psa less than 3.0, so no investigation was done. These microscopic mets were supressed with ADT with the main tumour at PG. These tiny mets reamined too small to be detected in PsMa scans.
While small, bone mets cause no pain and no symptoms, but the reality is they'll GROW.
Zytiga caused no weight gain, but I was cycling 200km++ every week. But after some months I had irregular heart rate and times where a strange pulsing pain would occur up/down spine and I became sensitive to cycling in more than 28C weather.
This pain did not occure often, I could not predict when it would happen but 3 months after quitting Zytiga the pain ceased. Zytiga does strange and different things to different men, and the Pca began to go high and I began chemo 10 weeks ago and it seems it is not working at all.
But I have no pain, just general malaise with first week of 3 after each chemo inject.
After Zytiga fails, docs here are not allowed to try Enzalutamide because it usually does not work if Zytiga fails. So next thing on list with rising Psa above say 10 is chemo with Docetaxel. Next thing allowed is another chemo, Cabazitaxel which causes more severe nerve damage in hands and feet, neuropathy. It may cause more heart bothers, and I cannot find much evidence to suggest it works better than Docetaxel, which BTW cannot work forever.
When Psa rises above 20, its not a bad idea to get Lu177 or similar systemic radiation. Once ADT and Cosadex and Zytiga cease being able to keep Psa low by manipulation of hormone levels in body, you need the Atomic Solution, ie, Lu177 or Actinium225, maybe Radium223 or else Pca will just win soon.
I am asking my onco next week to refer me to a Doc who does Lu177 because Psa with chemo has gone from 12 to 40++.
Psa is doubling each month, and something drastic must be arranged NOW, because in 6 months I will be very sick if I don't do anything.
80% of men getting Lu177 have lowering Psa and less pain after first inject.
Some have a huge reduction of mets that can be seen on scans. I think that a man with Psa of say 1,000 might not respond to Lu177 as well as a man with Psa of say 100, but I don't know if having Psa of say 10 would give even bigger response. Lu177 is allowed to be administered here in Australia where I live by a USA doctor who likes to live here, and its $40,000 for 4 injections. But Lu177 is also still being trialed here before it becomes officially approved to be used by Australian hospitals. See the videos on Theranostic treatments with Lu177.
I have lasted 9 years between diagnosis and beggining of chemo. But I have a friend who has lasted only 3 years between diagnosis and chemo.
Every man has a different story.
Patrick Turner.
Hi Patrick Turner, I had my first Lu-177 almost 2 weeks ago & so far no side effects. PSA was 18 so will let you know how it goes, they allow a month before first blood test then go to second infusion after 6 weeks if is needed.
Dr Lenzo at Theranostics is very good i think & i had it at Macquarie hospital in Sydney.
You will need a referal from your GP also.
The cost? well we try anything for ongoing existence. $9600 a go.
Hi Aries29, and to all other readers,
I have a full body CT scan that will occupy me most of day at a new local public hospital at Bruce in ACT. Only 6km away, so I can cycle up there to get it, and there's a 1 hour break after a radioactive thing is given, and I'm allowed to have lunch, WHOOPPEE, before the scanning is completed.
I'm very much in favour of lunch, and no doubt there'd be a vego selection somewhere.
Next week I have Psa on Tuesday, I expect 50, and then I see onco on Thursday and I hope he comes good with his promise to give me a referal to Dr Lenzo if the Chemo continues to allow Psa to zoom skywards.
Maybe no more chemo until Lenzo. But maybe a couple of Cabazitaxel could be tried while I wait for Lenzo's Atomic Solution with Auntie Lutetia and Unkel Radium. I'm sick of drugs that pretend to kill my cancer.
The Actinium225 is the one Lenzo might not be doing, but its the Fascinating One, it seems maybe better than Lu177 or Ra223.
There's nothing else for me.
Great spring weather here, 23C forecast tomorrow, and I'll enjoy the ride toget the X-rays.
Patrick Turner.
Good luck to you Patrick & i will let everyone know how my psa reads soon.
I dont think they can have the Actinium225 here yet but will ask.
They will want a GA68 pet scan before but Dr Lenzo will advice you.
My last PsMa gaium scan was last May, so if I must have another one before I get to Dr Lenzo, then so be it.
Today I cycled up to local Calvary Private Clinic for a full body CT scan, so it was totally free, bulk billed, maybe because the Canberra Hospital has lost its radiology careditation becausr they won't pay specialists enough.
Anyway, the radio guy said Lu177 said maybe Lu177 or similar would be my only good way forward, considering that chemo appears to have had almost no effect on Pca progression.
Quite a nice ride through bushland on this splendid spring day with the world full of flowers.
Hopefully Lady Lutetia is able to seduce your cancer into prostrate position before her, begging for mercy, but she just pulls a knife from her cloak, and plunges it in.
I stopped awhile by Ginandera Lake, and watched two swans attempting a take off into a 30km headwind, and they got up to running speed, wings flapping, and I thought they'd fly, but they slowed, and sloughed back into water, and one in front looked behind at the other, and I think it must have been a female, showing her male pursuer that she could out run him, but of course she didn't flee, they were but playing, and I bet pretty soon they'd make the whoopee thinge, and they'd soon have to build a nest among the reeds.
Day 7 after chemo was a most glorious day,
Patrick Turner.
Yes Patrick, we notice things in these grim days that we did not notice before,nature in all its splendour. I have a block of land & it is a pleasure to go there & just sit & gaze at the hills or just read a book.
Last time in Canberra we visited the war memorial & museum,that was something, if you have not been there treat yourself.
The galium pet scan here cost $550 but there are hospitals that bulk bill.
Best Of luck to you!
Last PsMa Gallium68 scan was about $750 here, I forget what Medicare paid. The cost is not the issue with me; its what treatment is available.
4 years ago there were no Ga68 scans or Lu177 or Ra223.
I been to War Memorial here, Nat Gallery, and Museum, and all have their attractions and usually a fairly good cafe, somewhat important.
Long cycle rides under wide skies is always restorative, balancing, and it kind of negates the trivia that so many are addicted to. I don't have a mobile phone, don't need Facbook, Twitter, and when I go to high mountain top and look down on my city, there it is, a tiny gathering of buildings huddled together in a vast sweep of land, and it seems insignificant, and I ask where am I in all this, and there does not have to be any answer, we all just are, and after a life of work I find myself not needing any meaning of why existence exists. It just is. So I better be nice to the doctors and all I meet so I can exist longer. I'm grateful to have a few friends, and no enemies.
Patrick Turner.
Yes we have the same questions about fate & existence & that is why people on this forum are helping each other i think.We might be in different countries but we are all human with the same emotions & the same desease here.
I have a 5 year old daughter that is teaching me about life again.I think God gave me this gift to ready me for what comes next as everything in life comes to an end sooner or later.
Be well my friend & fight the good fight as they say.
Thankou so much for sharing your story. Best of luck.
I am just starting treatment for rising PSA following prostatectomy and salvage radiation. Doubling time 1 month. No visible mets found with multiple PSMA and Choline PETs but my PSA is now 4.5 so something is there. Got 3-month lupron shot today (+ casodex pills for initial flare). During last couple weeks I polled med oncologists at Kaiser, UCSF, and Mayo to ask if zytiga or xtandi should be added to the ADT treatment. They unanimously suggested that, for me, it would be better to stick with lupron only: “this will allow us to use the zytiga/xtandi as an additional therapy if/when the lupron fails.”
The reason for NOT throwing everything possible at the cancer in the early days is because the cancer would mutate to resist what is thrown at it earlier, so if all possible hormonal manipulations are used early, there isn't anything left to prolong your life before chemo which is generally considered and end-stage treatment. It may well seem silly to not throw all at Pca early, but research shows that the length of life would be shortened. You might achieve an initial low Psa, but with ADT that does NOT mean you have beaten Pca, ie, the Pca cells have been killed.
Maybe some have, but most Pca manages to live on through the ADT treatment, but with reduced speed of growth, and while it does that its cells divide to make new Pcsa cells and there is some natural cell death and the celulare cycle of life continues on and on,with mutations at each new generation.
So ADT is staged so it gives maximum length of time of low Psa with suppression of testosterone through Lucrin, Eligard, and other drugs which do the equivalent of having testicles removed. BUT, the adrenal glands make a small amount of testosterone, and so total testosterone suppression is impossible, but the the adrenal testo is enough to allow Pca to remain alive and there has not been a way found yet to shut down the adrenal gland without causing sever QOL reductions and side effects. Abiraterone has been a substance that interferes with testo production by adrenal gland, but it has side effects, and its mean time of effectiveness is only 8 months. Envalutamide and Cosadex block the testo from getting to Pca but somehow the Pca manages to defeat that idea as well and the Pca mutates to make its own version of testo, called di-hydro-testostereone which is about 20 times more potent than plain old testosterone.
Some men have 20 years Pca suppression with normal ADT with Lucrin, but I know a man who got only 3 months, and I know one who said he got 6 years with Zytiga (abiraterone) and so far he's had 25 years since diagnosis. I got about 8 months with Zytiga, and only 6 with Cosadex.
I had a fairly long time of Pca suppression with ADT, see my full story with Psa graph since 2008 at
turneraudio.com.au/Patrick-...
My diagnosis in 2009 was TOO LATE, because I could not have an RP because the tumour at PG had grown to engulf it, and surgeon could not proceed to remove it without causing huge damage to me and there'd be NO success, Pca would have continued on anyway. I had a huge tumour which made a small amount of Psa, unlike other luckier men who might have a pea sized tumour somewhere in PG but have a high Psa so they get the RP early before the initial tumour has spread all over the place like mine did before the diagnosis.
50% of men getting RP ends all their troubles with Pca, and you never see any man posting here who had a successful RP.
So only surgery can be early enough.
But where the alternative to surgery is given as primary treatment, ie, ADT and EBRT, or in the case of failed RP, followed by ADT and RT, EBRT, the Pca is seldom ever defeated, and a man has to fight it until it it or something else kills him.
In cases like mine with a onon operable Gleason 9 with 9 live biopsy samples, the Pca has already spread. This idea is difficult for most men to accept because scans show no spread for many years after diagnosis and initial years of ADT.
But scans tell lies because of what they don't show, and cannot show, and mets can be remain too small to show up in scans for many years. In most cases, the mets are suppressed with ADT. But the EBRT has only been given to the PG, so the mets have different conditions for their continuance.
From little things, big things grow, and my first mets showed up in PsMa gallium scan in 2016, some 7 years after diagnosis. Then in 2017 and this year, more mets have grown larger enough to be seen by scans, and a scan now looks like a picture of a dalmation dog, spots all over the joint. The PsMa scan was a good scan because it showed mets 2 years earlier than any CT scan could.
But last Friday, I had a full body CT scan and it is a horror picture, I am riddled with Pca in my bones, and all these mets are still too small to cause any pain - yet - but they will over time. These mets have probably been present since about 2005 when my PG probably spawned its first cancer cells which immediately began to spread; its what cancer does. But I had zero symptoms and Psa was well below the 5.0 level where docs are supposed to fully investigate a man's PG.
In UK, their med system is supposed to examine men at Psa of 3.0, but many many deny there's any chance of any chance of any disesase including cancer, so they ignore their Psa. I was waiting my turn to get cancer, because so many other ppl around me and relatives were getting it, and some died fast.
Now the ideal Psa for PsMa scan to work is about 5.0, but where no mets can be found, it does not mean there are not dozens or thousands of mets.
It only takes a very small amount of Pca to produce your Psa of 4.5, and maybe that is from what remains active at your RP site, and despite the RT you had.
But over coming years, you may find, like me and thousands of other men that many mets begin to grow and begin getting big enough to see in PsMa scans and whatever other scans they devise.
In 2009, there was only ADT, and chemo with taxene based chemical derived from the Yew tree. Since 2009, abiraterone and enzalutamide came along, but only gave me 14 months extra time alive. The chemo I am having now is Docetaxel and so far after 4 infusions over 12 weeks the Psa has risen from 12.0 to 50.0, doubling time is one month, and so when the doc said the chemo would not work forever, he was wrong, because for me, what has happened is that it has not worked at all, and next Thursday, when I talk to my doc again, I'll ask him for the referral I need to have Lu177 systemic RT, aka Theranostic treatment, and I might need Radium 223.
Without these new treatments, my cancer will quickly claim my life.
But these new treatments do not cure the cancer. They might, if they work for me, kill a lot of Pca cells, but Lu177 gives mean extension to life of only 14 months. I could be lucky and get much longer, but nobody can ever estimate their survival time with Pca. I could find I spend $50,000 on Lu177, and get a very meagre extension to my life time.
Pca has proved to be an extremely difficult disease to cure without killing the patient with side effects. It is not the only horrible cancer to cure.
The fact is that once past a certain age, we become a CD, ie, a coffin dodger, and our DNA is what it is, and some of us will get one or more of any number of cancers which will have a variable effect compared to other ppl and all we have is treatments suited to most ppl.
Immune therapy looks most promising because our white cells can be altered to
recognise our cancer as The Arsoles Who Must Be Killed, and in the few cases where immune therapy works, the treated white cells multiply after treatment for years and they keep killing cancer cells, so some men have had 9 years of extra life after Provenge but most other have had a mean time of only 4 months.
Best IT now is at Marsden Hospital in UK but only 15% get a benefit; but for a lucky few men its like a miracle.
But its all experimental, and its years and years away from ever being regular treatment, so while we might hope something will turn up there is no certainty it will be there when we need it.
So far, I have lived long enough for Lu177 and Ra223 and Actinium225 to have become available. But although these things are targeted systemic RT, there will be side effects, there will be Pca cells which survive, and some may mutate to NOT make PsMa so futher targeted RT with Lu177 would be futile.
Any Pca which does not generate Psa and hence no PsMa could only ever show up in CT scans that don't depend on PsMa and a man is in deep trouble, because the present Theranostic with Lu177 would be useless, so he has to learn to die, and become addicted to the pain relief drugs during his end game.
Its a beautiful day here, and I'll go for a good cycle ride today. I know I have a problem, but I can be rational about it, and live well with it. I'm 71, and I cannot live forever.
I have some craft work to get on with in my cluttered shed where I like to lurk away from the world and its crazy ideas that if we follow the Kadashians we'd be immortal and infinitely cool, and I find I can live without a mobile phone, or Facebook, Twitter, and all manner of worldy bullshit.
If I can have a good Sunday, there's a chance you might too, and of course the trouble is that we all have different abilities of coping with fundementals of things like Time, Health, Happiness, Adversity, etc. I am unable to provide a magic wand to allow troubles to vanish, but I tell myself I have to handle what comes along, choose a way through, and get on with it. I might be lucky, because I have known many who struggle with any sort of challenge, and they find there's not one good thing about reality......
I wish I had an answer for them.....
Always look on th bright side ?
Patrick Turner.
The bright side has always been my strength. Desision making has been difficult primarily due to listening to my urologist, rather than retaining a good oncologist which I have now. Thanks for sharing all your wisdom and insight. If your ever in Oregon let me know
When it became painfully clear that the primary treatment of my Pca with 2 years of ADT and with 70Grey EBRT at 6 months after beginning ADT was a dismal failure, I basically sacked my urologist by arranging a consultation and handing him a letter asking him to transfer me to an oncologist to "see me out". He had ZERO to offer me. He gave me the referral, and I've seen the same onco doc now for 6 years. He's been as good as any other expert could have been in managing what has been a long chronic disease.
But if I get Lu177 from another doc, then I will stay in contact if I need to, after all, it ain't over yet. I tend to find ppl to help when I need to and most are quite happy to help.
Patrick Turner.
Very bad advice to hold off on any treatment for use later. Treatments prolong survival more when used earlier. There will always be new treatments in the future.
This is what I thought, but my oncologist went to some big meeting of other oncologist and she came back questioning if she should have me on lupron and casodex and exclude zytiga until later. But I am going to persuade her to run the course of zytiga. Thank you
Perhaps it was the ASCO meeting? If you can email her, send her the following link of a study from MD Anderson that was presented at that meeting:
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