PSMA: My MO suggested I follow the... - Advanced Prostate...

Advanced Prostate Cancer

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PSMA

Drphil1938 profile image
32 Replies

My MO suggested I follow the advancement and progress of PSMA. Can anyone give me a quick tutorial on this treatment?

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Drphil1938 profile image
Drphil1938
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NPfisherman profile image
NPfisherman

Here is some info on PSMA :

ncbi.nlm.nih.gov/pmc/articl...

I believe he wishes to let changes on the Gallium 68 PSMA scan--the best scan currently for prostate cancer at the lowest PSA --to be the driver to making changes in your treatment regimen...

If that is the case, then he may wish to put you on dutasteride, which per a post by pjoshea13 the other day, will increase PSMA expression in cells.

healthunlocked.com/advanced....

Hope this helps.....

Don Pescado

Drphil1938 profile image
Drphil1938 in reply toNPfisherman

Ty. All help appreciated.

Drphil1938 profile image
Drphil1938 in reply toDrphil1938

Ty

Tall_Allen profile image
Tall_Allen

I think you mean Lu-177-PSMA-617? The VISION trial is currently recruiting:

clinicaltrials.gov/ct2/show...

Drphil1938 profile image
Drphil1938 in reply toTall_Allen

Ty

CantChoose profile image
CantChoose

Here's my probably limited understanding...

PSMA is a membrane protein that researchers have started actively targeting because many cancers produce a lot of it. They way they're doing this is to attach a radioactive ligand to a molecule that locks into the membrane antigen receptor. They are trying many different kinds of radioactive particles. Some are smaller and decay more quickly, which can damage fewer healthy cells. There are also trials going on to see if giving this treatment with other adjuvant therapy can increase efficacy.

The hope is that some of the newer options will be trialed soon in the U.S.

cesanon profile image
cesanon

Tall Allen has a nice blog site with carefully curated info on various prostate cancer subjects. I would start by asking him for a few links on the subject.

Patrick-Turner profile image
Patrick-Turner

Maybe most questions may be answered at this site :-

theranostics.com.au/what-is...

PsMa is a prostate specific membrane antigen, and different to plain old prostate specific antigen, Psa, which is generated by healthy prostate gland cells but also by PG cells with Pca, so high Psa = likely Pca.

To treat Pca now, one method involves theranostic method, starting with a special PsMa Ga68 PET / CT scan which involves infusion to a vein of a solution of mildly radioactive isotope Galium 68 plus a chemical known as a ligand.

The Ga68 is quite harmless, and only a tiny amount is needed, and it circulates in blood veins and arteries all around the body. The ligand + Ga68 bonds to wherever PsMa is being produced in a man's body where Pca is present, so after say 90 minutes, there is a lot of Ga88 gathered at each Pca site, but very little Ga68 is anywhere else.

Then a special PET scanning method can make an image of where the Ga68 is gathered because the ga68 radiates enough radioactivity to make the image, and a CT scan can tell where the location of Pca is so then doctors know where Pca is in PG and other places if Pca has spread.

I have had 6 such scans which have assisted docs to evaluate how much Pca I have, where it is, and whether it is growing or dying, and the PsMa scan has proven to be an invaluable tool for tracking Pca and deciding on what other treatment might be needed.

So PsMa is an essential part of Pca diagnosis and its treatment.

But PsMa also allows the same ligand chemical to get a much more radioactive isotope Lu177 to bond to wherever Pca exists if it does generate PsMa. The Lu177 emits cancer killing alpha and beta particles at sites of Pca, but elsewhere in the body the Lu177 has almost no effect, so this is targeted radiation, and is the therapeutic application of Lu177, and the method of using Lu177 is to have an infusion that is very similar to having Ga68 infusion, so hence we have "theranostic", a combination of words therapeutic and diagnostic, because both processes are so similar.

Most Pca does generate PsMa, and some Pca in some men does it more than other men, and how much Ga68 is attracted to a PsMa at any given place in a man's body can lead radiologists to specify the amount of PsMa avidity, or in simple language, how hungry the Pca is to get a dose of radioactive Lu177 that kills Pca.

Within the last 10 years theranostic treatment was begun in Germany, much complex knowledge has gained by better minds than my own. Lu177 was first tried on patients with end stage Pca, with months to live. Well, some got so much Pca reduction they were up out of bed and lived on for years, while some others got no benefit at all.

I've just had 4 infusions of Lu177 after my chemo failed, and Psa before Lu177 was 25, and now its 1.6, and the radiologists report says that my soft tissue mets have vanished and considerable bone healing is going on where at least some of my bone mets exist. So Lu177 has been good for me, and I might live another few years instead of painfully experiencing end stage disease with increased Pca invasion of more organs and bones and death next year.

There is now a trial in Melbourne where a suitable selection of men are getting Lu177 as primary treatment instead of the usual RP or EBRT with ADT.

These men may get a much better result of longer life than any end stage patient, and other treatments with ADT, enzalutamide, abiraterone of chemo can still be used if Pca grows back again, and before the Pca mutates into something than nothing can treat.

It would be nice if chemo could be targeted in the same way as the nuclides such as lu177 and Ac225, but one reason why chemo is a horrible therapy is that it cannot be made to gather densely at pca sites, so the chemo is spread evenly around the body, so many places are badly affected by chemo, especially the immune system and the amount of chemo at Pca sites is no higher, so the chemo poisons the whole body, not just the Pca cells.

Maybe I have helped you understand PsMa.

Patrick Turner.

Drphil1938 profile image
Drphil1938 in reply toPatrick-Turner

Very good, I thank you.

j-o-h-n profile image
j-o-h-n in reply toPatrick-Turner

Great Post !!!

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 06/28/2019 9:27 AM DST

MeliaQuinn profile image
MeliaQuinn in reply toPatrick-Turner

Thanks Patrick! My husband is looking into the Vision Trial and your post was very helpful! You said you have had 4 infusions, are you planning on doing two more?

Diane

Patrick-Turner profile image
Patrick-Turner in reply toMeliaQuinn

Hi to all,

I live in Canberra, capitol city of Australia, about 440,000 ppl

Its not big enough to attract the best medical services which are probably in Melbourne and Sydney, each with over ten times our population.

Theranostics Australia are operating in Perth on west coast, and Sydney and maybe Brisbane on East coast. I travelled 300km north east to get to Sydney treatments. Cost was USD $6,800 for each of 4 injections and I had to have PsMa Ga68 PET / CT scan before beginning Lu177, then another after No 2 shot, and another after no 4, and there will be yet another in a 2 months, cost USD $500 each.

I am also taking enzalutamide ( Xtandi ) and docs think that is working well because with previous chemo and Lu177, my Pca has become re-sensitized to this kind of drug I began this drug right after No 3 Lu177 and so it was active before No 4, and research doc here said Lu177 is more effective when on enzalutamide or abiraterone because they make Pca express more PsMa receptors, thus making more Lu177 gather at sites of Pca, so more zapping. There's now a trial in Sydney at St Vincents for Lu177 + enzalutamide.

Often it was noticed by those in clinical practice that that men did better on enzalutamide + Lu177, and the trial is trying to confirm this is true.

I have no idea yet how much Pca the 4 Lu177 has killed off. But Doc said its likely Pca will continue on and become a future threat and I might need a shot of Ac225. So I may have to go back for more to bash down the Pca again, which is like a weed, you cut it, dig it out, poison it, but is still comes back. The other big worry is that some of my Pca has mutated to not generate Psa or PsMa so any further PsMa scans will not detect it and Lu177 would be useless. Then I'd need expensive DNA analysis of tumours and also see if I carry Brca2 gene, which is highly likely because females in my family history got Oa or Brca. Dad died at 60 from melanoma. I had no brothers, but I probably have the gene. I never had a family, so no daughters, who could be tested.

If I am Brca2 positive, there are drugs supposed to be able to target the Pca but I know a man who went through this process and Psa went from 40 to 450 in 2 months, so the drugs failed, and he got mets in his liver that were not making Psa and he could not have Lu177 so he died in another month. His time from diagnosis to death was 3 years, and a pile of treatments did not work as docs thought they would. He had rotten luck, leaving behind a beautiful wife and 2 teenage kids, who now have to struggle on.

But mean time of life extension with Lu177 is 14 months, and this is based on data so far from many men who have tried everything else, so they are older, and start Lu177 with a high Psa, maybe 100, 200, and a high amount of Pca. I began with a low Psa of 25, and was fairly heathy at 71, and for 3 weeks before No 2 Lu177 shot I cycled 960km, over 300km a week.

But I was not aware I had a hip that was about to cease working properly, so I cannot cycle now. But I was very fit for years before beginning Lu177, so I have not had so many side effects as other men who are not fit, or are older. I may cycle again if I get an arthroscopy or new hip joint if the Psa continues to reduce to indicate I will be around for maybe 5 more years. If a cancer condition is terminal, ie, likely to kill within a year, a man usually is told he has to take pain killers for any other condition and docs would not give him a new hip joint.

The PsMa scan method and I guess the machine that does it did not come to Australia until 2015, with Lu177 possible after that, so in many parts of world its still not established, maybe because its so expensive, mainly for rich folks. PsMa scan and the Lu177 is not at all funded here by Medicare because Lu177 is not fully approved by a successful phase 3 trial; its only at phase 2 trial level; the docs know that 70% of men who generate a good PsMa image for their Pca and then get Lu177 will get a benefit, ie, Psa will be reduced by 50% at least. Although it Lu177 just stops Psa rising then that could be a benefit. The first Lu177 I had did not reduce Psa. But docs thought soft tissue production of Psa went down, and my bone met Psa went up, so Psa stayed constant. Next Lu177 did not have huge reduction either, but then after No 3 and 4 the Psa went to 3.7. and now its less than 1.6 and scan report said bone met sites are trying to heal up, and all soft tissue mets are gone. But that does not mean that Pca fight is over. It just means I should get the mean14 month life extension, with a big chance I get more. I cannot predict the future though.

Side effects of Lu177 were negligible, with slight pain in 5 bone met sites after No 1 and No 2 shots, lasting about a week. A couple of other sites had pain after No 3 and 4, but none now. My biggest bone mets were about the same dia as a pea, about 10mm dia, and none threatened bone strength or caused the bad pain from micro fractures.

I had a slightly dry mouth after No2,3,4 infusions, lasting a week. But now I think the dry mouth side effect is increasing at night, one reason being that I have to sleep on back, and not on side, and when I wake up for pee 4 times a night I am dry, but a glass of water fixes that. But even if I don't drink water, in a minute or two I have saliva. Lu177 tends to gather in saliva and tear glands and cause immediate soreness that lasts a month. So some damage occurs, then body recovers, but probably there's enough damage to prevent the cells in these glands to replace so well, so they cease functioning so well, or not at all with time. But a friend had a non Pca tumour in his neck area before he got Pca. He had an op and then chemo and IMRT, and has had a very dry mouth for 10 years, and dry eyes, so he uses tear and saliva replacement stuff. Hey, he's alive and cheerful, so lets not despair over a couple of minor side effects.

The same sort of neck cancer killed the doctor who treated him.

BTW, OZ is abbreviation for Australia. Now youse have maybe heard of the movie from 1950s, Wizard of Oz. The wizard was not from Australia. I dunno where he was from, but he's sure getting old by now, and worn out by doing so many trick fixes for so many ppl.

I might have a slightly Australian accent, but its not full on where some ppl here would say "Oim From Astraya aneye loik to eat meapies" which conveys to "edjakated lissnus" that the speaker is not well ejakated, and probably has "gorn astray" in his life maybe drunk a bit too much beer, and because he likes meat pies his diet is terrible and he probably has a few health problems. He is just a bloke, OK, and he might be married to a "real good shiela", if he's lucky, and she often "azza few trublez", and her husband "carn werker out". No point in trying, Mr Australia, because understanding women is an extremely rare skill world wide, is it not so my friends?

If anyone speaks the English language correctly here they are thought to be a half pom, ie, they are nearly bloody pomme, ie, an educated person from the UK. The well spoken of Melbourne fit this type, but we all can understand all of they say. In UK, many versions or dialects are spoken by the masses in Ireland, Scotland, Liverpool, cockney, Wales and Sheffield et all.

We all need to not be two down on ppl who are different, and all need to not be three serious. Shielas and blokes need to love each other, and if one has not the partnership of the other in later years, then practice goodwill to all.

I much like the young waitress at the café where I by lunch and read the daily papers. There's no chance of me having a future partner. But that waitress is a real good shiela.

Cool winter day, sunny with a few clouds, no wind, and its quiet and relaxed, without the buzz and crowds of city center.

Patrick Turner.

MeliaQuinn profile image
MeliaQuinn in reply toPatrick-Turner

Thanks for the update on your journey with LU-177. Hoping you get a very long run, sounds like the side effects haven’t been too bad. Do you know if the Actinium 225 acts in the same way as LU-177? I’ve heard it is sometimes used in combination with the LU-177 administered together?Enjoyed your post this Saturday morning!

Patrick-Turner profile image
Patrick-Turner in reply toMeliaQuinn

Hi Melia and to Ronnie1943,

From what I have read from a long time ago when Ac225 trials began, it seemed like it was maybe the most effective of the nuclides that could be used against Pca mets in soft tissues and bones but also I have heard the side effects of dry mouth and eyes are more severe. But in Germany they started using combinations, depending on just where the Pca was in a man. Now I am not an expert radiation doc who manages patients. You and your husband could discuss possibilities for what would be best for him with the doctors who do this specialised treatment at wherever it is available near you, or with Theranostics Australia who have treated hundreds of men these last 3 years, then maybe you'd get to understand what Lu177 or Ac225 is best for your husband. I think I had to pay USD $350 to begin negotiations by Skype with Dr Lenzo in Perth who then spoke with me for 30 minutes. But before that happened, their office needed my medical history sent to them and I had to have a PsMa Ga68 scan, and the doc studied these before the skype call. This seemed daunting at first because I had to download skype on my lap top, and I bought a good pair of headphones with a good microphone better than what is on the lap top, and then got used to using the Skype, because there was always a call before each infusion and one after, and I managed to handle all that OK.

Dr Lenzo is in Perth, 4,000km away, and he was flying to Sydney every other week to see patients. It is law here that where doctors do not have face to face appointments there has to be a Skype meeting so the doc can see the patient, and patient sees the doctor.

This works well, and saves patients having to travel vast distances just to see a doctor.

I have no idea how available Lu177 or Ac225 is in US, but at my No 4 infusion there were 3 others at the clinic and 2 were from US and one other Oz man like me. So maybe Lu177 still needs phase 3 trials to e completed before its more widely available in US. It is not yet fully approved here, but TA is allowed to sell here it if all other normal treatments have failed. This usually means Lu177 is a last throw of the dice for many men who try all things such as chemo, and often for too long, and letting their Psa go real high before getting to Lu177.

I had Zytiga fail when Psa went to 6, and it was 12 when I began chemo, and watched the Psa like a hawk, and it went up to 36 in a month, then flat lined at 25 and then went to 40+ at 4 shots and I knew it had failed and my oncologist agreed, and so did a local doc, because Psa is supposed to GO DOWN, NOT UP, OK, so my oncologist was happy to refer me to Dr Lenzo. I had a No 5 chemo, Psa went to 50. Then I waited a month before I had No 1 Lu177, and for some reason Psa fell to 25.

But before No 2 Lu177, Psa remained at 25, and the doc was not sure I'd get any benefit but I told him the only way is forward, and to really know I'd get any benefit I'd need that No2 shot, and I went ahead, and Psa began to fall before No 3 shot, and then a lot more by 4 shots, which is the standard treatment. But as I said elsewhere, I may need more again if Psa goes high, and I'll need to have PsMa Ga68 scan to see if there is enough PsMa "avidity" to give a good scan image and thus show that Lu177 or Ac225 will be well attracted to Pca sites.

For me, its not over yet.

Nature has delivered us some welcome rain to some desperate farmers suffering in a long drought.

Gardeners in my town are also happy.

I am getting enough pain relief for my sore hip with one Voltaren 50 + one Panadol Extra in morning and at night, dose is just right, not too much, so I can wait for a few months to see if the knee & hip surgeon can do something for a longer term fix, and see if my Psa keeps going lower; my fingers are crossed.

All the best to all of you,

Patrick Turner.

MeliaQuinn profile image
MeliaQuinn in reply toPatrick-Turner

Once again, thank you for sharing your knowledge and experiences. I wish you the absolute best moving forward-it is so helpful to have people on this forum that are willing to take the time to write and inform others.

Patrick-Turner profile image
Patrick-Turner in reply toMeliaQuinn

Where it is possible, we all should just calm down but make steps to counter the progress of Pca in a methodical way, and then hope for the best, without expecting miracles. So ask yourself to have courage, and usually a voice inside yourself agrees its a good idea, and then try to make a plan you can work on. Don't worry too much about the risks because no matter what anyone does, they are always there, but you and I have both travelled from our past to find ourselves talking together so both of us must have made enough good moves to survive the slings and arrows that life brings, is it not so? So, how about a few more good moves, and pursuit of Lu177 seems to me to be the best move I could have done because expecting chemo to work seemed futile, because I became aware of the statistics about chemo, and how they forecast whether chemo was working or not. I have seen men have a good response with Docetaxel, or Cabazataxel, but my response was nowhere near as good as these cases, and my oncologist agreed, so there's nothing to be gained by "flogging a dead horse" by continuing chemo for a maximum of 10 doses, and suffering much longer lasting side effects, and then having Psa bounce right up again. I could afford the Lu177, less side effects, I got a good response, and the during the 4 trips to Sydney of 300km, I was able to stay 2 days with my dear older sister who I get on with well, but who of course will not be around forever, and she's the only person in my family I am close to, so going to Sydney was a case of achieving more than just an outcome with Lu177.

Here where I live its cold now, and I have no partner, but then I have been robust enough to have a life without a partner, mainly because I gained satisfaction with the customers I pleased with my work, and with the pleasure of a few friends. I was never fully dependent on anyone else, including God, and I'll dare to mention God because its Sunday, but I have seen ppl pray, and it made no difference so I have learnt to survive without prayers, and for many years on a Sunday I thought it was more rewarding to venture out on a bicycle on country roads and around my town to admire Nature and not burden her with silly requests.

It is another sunny winter day here, after some welcome rain last night, and having lunch at my café will be pleasant, and I had a good day there yesterday discussing sex, politics, and religion with a friend I much like even though he thinks the opposite to how I think on many issues, but that makes us both think deeper, allowing wisdom to emerge.

So, you look after yourself Melia, and your man, we all love being alive, no?

Patrick Turner.

MeliaQuinn profile image
MeliaQuinn in reply toPatrick-Turner

Very much enjoyed your post! How cold does it get in Oz (where you live) in the winter? Our family travelled to New Zealand a few years ago but that was over Christmas and the weather was beautiful!

Patrick-Turner profile image
Patrick-Turner in reply toMeliaQuinn

NZ does have nice summer weather, but south of it is cold in winter.

It is a small size nation surrounded by ocean.

Last night here was -5C, with +15C max forecast. I have seen -15C once, in 1977, at a building site outside a built up area across town.

But last January we had about 3 heatwaves where max went over 40C, and records were set.

The temperatures in France now, 46C yesterday, are indicating climate change is real.

Heat from deserts south of Europe is drifting north more often and

high summer heat in our huge desert areas is drifting east to the coastal areas more often than they used to, because although average world T rise has been estimated at only +1.5C over last 200years, it means the peak T will be a lot higher, and its likely that Melbourne, Canberra or Sydney could be subject to weeks with peak T of 50C ( 122F ) in future. Best time to visit Oz is in mid spring, October, or mid autumn, April, in the south part of Oz, and in the dry season in tropical north, about now.

I'll try to survive today, then tomorrow....

Patrick Turner.

Cosette100 profile image
Cosette100 in reply toPatrick-Turner

Thanks Patrick. I am australian now too. Moved there many moons ago. Had 3 kids. Brisbane. Ronald is in Holland, he has done it all apart from the PSMA scan w the special tracer, but has had the PET scan etc.. will discuss with his oncologist. Good luck with you amo to fight this monster. Bu do no forget to live whilst trying to beat it.

Cosette

Patrick-Turner profile image
Patrick-Turner in reply toCosette100

Hi Cosette, well I won't ask many questions why your husband is far away from you, but he's maybe well situated to get Lu177. I had gee-whiz scans that showed nothing, but in 2016 I had the first PsMa Ga68 scans which showed my first 2 mets in 2 lymph nodes well before any other scan could have shown. Then I knew I could have countless mets, and I did, as later PsMa scan showed. And these had probably been there since before diagnosis because of what docs found when they did biopsy in 2009, with Gleason 9, and inoperable, so spread was highly likely. But ADT kept Psa low in PG and the mets until 2016. So mets could not be seen until then. Many men think they have no mets, but its often not the case. They are there, just have not grown big enough for any scan to see.

I don't mind being reminded to remember to live. Well for many, living means a huge amount of self indulgence on travel, cars, houses, business pursuits, but was always quite happy if I hardly ever traveled, hardly had many cars, now driving 1986 Ford Laser my mother used to drive, still living in house I bought in 1976, slightly improved a bit, and I am glad to have retired from what was a non-profitable business in 2012. I ain't poor, I ain't rich, and I'd like a partner but that will never ever happen like just it has not for any long time over last 50 years. I was good at using my skills to survive and work, but spectacularly hopeless at being able to keep any lady "on the porch" ; they all wanted more than I could give, said they loved me as they backed out the door in tears, kinda looking all neurotic but when young I could do nothing to stop ladies doing what they said they wanted to, and none valued me, so OK, I'd just do life alone, so here I am, alive, and its quite good and I don't need much, and I don't expect much and I want so little and I don't mind the peace and quiet of my existence. The rest of the world seems to rush about consuming and putting on agony and style, but that's not satisfying to me, and so be it. When I say I did not travel much its not quite true, I go to NZ for a honeymoon, and when I returned the missus began her slide to deep dysfunction and she fled. After 3 years I had a trip to Bali where i saw happy ppl who had nothing, and that resonated with me very well. I rode a bicycle for 240,000km, which is a lot further than anyone I know ever traveled at vast expense, and for silly reasons, and learning nothing.

At 72, I have a quiet life, no women friends no dates, but so what, I'm alive, and not in pain, and its nearly time for lunch at a café, and I'll read the papers, have good food, maybe talk with a friend, maybe nobody, I don't feel any desire to live better. I guess I did at 30, because I could engage with women better, but then, most I met couldn't commit to anything, let alone to any sort of life with me, so I got use to women coming for awhile, never caring, then leaving, so OK, but I never was financially ruined like so many other men, so I can't say I had a bad life.

I don't mind never having children, and yours don't have to bid at a house auction against mine, so my not breeding helped others survive better, and was good to reduce global warming.

Keep well, Patrick Turner.

Cosette100 profile image
Cosette100 in reply toPatrick-Turner

Hey, hope u had a goo lunch at yr cafe...sounds like a good life..yes a companion would have been great, but friends or a pet can fill a social void. It is not my husband who is in Holland but my brother . My husband and me and our 3 kids are at the moment in theUSA

Patrick-Turner profile image
Patrick-Turner in reply toCosette100

Hi Cosete100, OK, a bit hard to follow all details there for who is where, but I hope your brother the best in Holland, not far from Germany.

I recently adopted a cat which belonged to a couple next door. They had 3 kids who'd all moved out. But the man got lung cancer, and after a truly horrible story of treatment stories he died last Feb. But the mortgage on their house was still huge, because they'd borrowed a pile to add extensions. Both these ppl worked, and his wage paid the mortgage, and she paid to run the house, but without his wage, she could not afford to stay in her house and could not wait to move out as debts and costs built up on the equity.

I offered to take their cat, a former pet of one of the two daughters. The remaining 4 in the family could not take the cat where they were, so they accepted my offer and Storm is with me, and has slowly begun to think of my house as her home.

New owners came, a young couple who are doing well, with two young kids, so these are the fourth owner of the house since 1976 when I moved in. A cat suits me, I could not walk a dog, and I don't have a dog proof fence around my yard. Cat is slowly discovering how to get on with me, and spends these winter days sleeping in sunny places inside. After 5pm she roams, goodness knows where, and often isn't back until after midnight, even on frosty nights, and often seems angry that its so cold.

Maybe she gets a bit more friendly as time goes on, and she'd not have any idea that while I am alive it means she does not get taken to RSPCA where I think she'd be put down because she's slow to accept new ppl or other cats.

I don't have a clue how I could have arranged a better existence for myself without huge expense and moving traumas, and so "this will do fine" and I am far better off than about 4 billion other ppl on Earth.

Lunch was OK, talked awhile to a friend, read about the dilemmas facing humanity in newspapers. There is an absence of sensible solutions on which we all might agree upon. Its been happening ever since we evolved from monkeys who evolved from smaller mammals who all had to compete with each other and battle with predators, and with the unpredictable conditions which Nature has thrown at life for hundreds of millions of years.

I'd love to be able to cycle somewhere and not have a few days of pain afterwards, but I have some creative circuit design to get on with for those who love vacuum tubes and music. I enjoy sharing with ppl with a common interest, and here the interest is an enemy in common, Pca, but if I find other things that I can appreciate in others I meet along the way, then at least I feel the better for it. I could sit here all glum all day, but I am not glum, not depressed.

Take care, Patrick Turner.

Cosette100 profile image
Cosette100 in reply toPatrick-Turner

M brother is thinking about going to Germany. .his onco however said lets keep that in the bag for when chemo doesnt help anymore. Is it yr opinion that its better to go to germany and fight it now now with Lu-177 etc or indeed wait ..he has mets to thoratic and spine bones, no organs, and is hormone resistant not a candidate for immuun therapy either. Handles chemo extremely well. Is fit with of course all the limitations this disease brings. Had hip replacement the other week, but is up and about. Psa 37. Seems not to go down fast on only chemo..anybody any suggestions. He was diagnosed nearly two yrs ago with aggressive end stage. He live in the Netherlands, money no problem.

Patrick-Turner profile image
Patrick-Turner in reply toCosette100

Hi Cosette100, whether you now go for Lu177 or later might depend on a better picture of your brother's Pca, so I would suggest he have a PsMa Ga68 PET/CT scan asap if he has not already had one and because you are in Holland, then Germany is easy to access, so you should be able to talk to the doctors giving Lu177, or maybe Ac225. You should maybe talk to docs before getting PsMa scan because docs should be able to explain more than I can.

I found 2 x shots of Lu177 had little effect on bone mets and Psa, but I had major effect on many lymph nodes, but after 4 x Lu177, there has been a big drop in Psa, and good report saying bone mets are healing. I am also on enzalutamide. Psa was 1.6 at 2 weeks ago and trending down. So far, so good. Lu177 gives less side effects than chemo, which so often gives disappointing results with bone mets. My onco let me try chemo which he told me "this probably won't work very well..." And it didn't.

In Germany they seem to have a trend of men getting good benefit when Lu177 is used early, before everything else fails, and probably before the existing PG tumour and mets have had time to mutate to become less treatable later.

There is now a trial in Melbourne using Lu177 as primary treatment. I don't know conditions to qualify are, but maybe its where there is a Gleason 9 initial score, and already some mets exist. I think I would have benefitted from early Lu177, because I was Gleason 9 in 2010 and inoperable, Mets were not found in 2010, although mets were not found but there were no PsMa scans then and I think there were many mets, all just too small to be seen in any type of scan, and they had no effect of day-to-day living. Docs maybe think that even small tiny mets will be affected by Lu177, so that that means less damage to surrounding healthy tissue.

After initial Lu177 treatment, the seems to be no reason that other existing treatments cannot be used. I am staying on enzalutamide probably until Psa rises again which could be a long time, but nobody really knows because the combined effect of having enzalutamide after chemo and Lu177 is not yet well known, but guess what, there's a trial going in in Sydney St Vincents Hospital to find of if having Lu177 while taking enzalutamide is more effective than just having lu177 and no other added thing. Docs think that the Lu177 prevents the Pca being able to defend itself or hide from drugs like enzalutamide or abiraterone, or even Keytruda, which is known to be ineffective against Pca if that is used without anything else. Lots happening here.

I doubt your brother has anything to loose by starting the ball rolling with Lu177, but talks to docs to give this is a big must-do.

Keep well,

Patrick Turner.

ronnie1943 profile image
ronnie1943

Hi, Patrick, My husband Sam may be having this trial Lu-177.

May I ask if you live in the states and if so where did you get your PSMA scan...also after it was determined that you infact had the PSMA after having the scan, did you have to be scanned by the special scan machine that can pick up the PSMA or after your infusions could you have regular ct scans to see that your PC tumors improved?? the reason I'm asking is that the hospital close to where we live can do the infusions but does not have the special scan machine that can pick up where the PSMA is in the body?? We have to travel to another state to get the scan, would not like traveling back and forth to another state for many scans.

Thank you for your post, gave us much hope.

Prayers coming your way for continued good health.

Lynn. Pa.

j-o-h-n profile image
j-o-h-n in reply toronnie1943

Patrick is in Australia (known as "OZ" to the in crowd).

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 06/28/2019 9:26 AM DST

ronnie1943 profile image
ronnie1943 in reply toj-o-h-n

Hi..... j-o-H-n....

Thanks for your response!!

Boy, I'm really out of the loop!! Lol!!

Good Luck, Good Health and Good

Humor to you too!!! 😊

j-o-h-n profile image
j-o-h-n in reply toronnie1943

The only reason I know he's from Australia is his accent.

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 06/28/2019 4:00 PM DST

ronnie1943 profile image
ronnie1943 in reply toj-o-h-n

Thats a long way from Phildelphia, where my husband Sam and I live...

Where are you located J-o-h-n ?

Lynn Pa.

j-o-h-n profile image
j-o-h-n in reply toronnie1943

New York City (the rotten apple)...

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 06/28/2019 4:45 PM DST

monte1111 profile image
monte1111

We just usually say "Here's Johnny!"

j-o-h-n profile image
j-o-h-n in reply tomonte1111

OK 'll be Johnny and you be Ed McMahon...

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 06/28/2019 4:02 PM DST

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