I am new here, I am from Australia, I... - Advanced Prostate...

Advanced Prostate Cancer

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I am new here, I am from Australia, I have extensive mets.

Metungboy profile image
20 Replies

I am currently on zoladex, exercise and red wine. Last year I had 6 courses of Docetaxel which was not fun.The PSA has been about 5 to 7 for 3 months. The PSA at diagnosis was 512.

A recent PSMA/Pet/CT shows a lot of assymptomatic PSMA avid disease.

I will have my first dose of Lutetium 177 PSMA in 2 weeks. Although I am labelled as hormone sensitive, I think this makes no sense. If the cancer was entirely hormone sensitive the PSA would be close to zero. I will start abiraterone and pred. after the rays.

Anyone else had LU PSMA in similar circumstances?

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Metungboy
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Tall_Allen profile image
Tall_Allen

To my knowledge, it's only been used in men who are castration resistant after most other options have failed. But using it earlier may be a good idea. Hormone sensitive/castration resistant are relative. After metastases, there is always some population that are sensitive, and some are resistant. But there are medical definitions of those terms: hormone sensitive means PSA drops with lupron; castration resistance means that PSA rises while on Lupron or new mets appear.

JoJoinLA profile image
JoJoinLA in reply toTall_Allen

Hey Tall...seems that all the new therapies and drugs are moving up the the treatment course doesn't it? Have you seen anything in studies that indicate that using LU-177 on those metastatic at diagnosis would be harmful? Isn't radiation radiation and this is just a new delivery method?

Tall_Allen profile image
Tall_Allen in reply toJoJoinLA

I know that PSMA increases over time, so a PSMA-directed therapy may be more efficient later. On the other hand, there are more cells to kill later. It may be a good idea to use it earlier.

Metungboy profile image
Metungboy in reply toTall_Allen

Thanks Tall,

I am aware of the strict definition, but from a biological point of view, it makes no sense. I am a medical practitioner myself with many years in family medicine, but also in the past a special interest in HIV medicine. I ran a regional sexual health clinic for many years. In the early days of HIV there was sequential monotherapy. Each therapy worked for a little while then the virus mutated and evaded that therapy. A new therapy was then introduced and the same thing happened.

Eventually "triple therapy" occurred which completely changed the prognosis. HIV is now a disease you live with largely rather than die from. Most people die from cardiovascular disease which is exacerbated by HIV.

If you think about prostate cancer and in fact most cancers as being similar biological beasts to other lifeforms such as bacteria and viruses, to me it makes sense not to have sequential monotherapy but to have multiple therapies at the same time.

This is not an attempt to cure or kill all of the cancer but an attempt to control, just as in HIV. There is good evidence that adding six weeks of docetaxel adds to survival and now there is good evidence that adding abiraterone earlier also adds to survival.

I appreciate that there are no studies showing adding abiraterone to regimes with docetaxel makes any difference but there aren't any to show that it doesn't either.

I have extensive disease, and the list of bones without disease is much smaller than the list with disease.

I am at the moment. "Hormone sensitive" but this I think is quite a misleading statement. The initial PSA measurement I had was 512 and now it is around about 6.

This does mean that there has been a considerable response, but it also means there's a population of the cancer that is not responding,Hence, in my view "castrate resistant". The fact that people who have a high nadir PSA do worse than those with a low nadir suggests that this is a sensible way of looking at this issue.

Nearly every, but not every, trial shows that adding more agents earlier improves survival and delays the onset of symptoms. It is important to keep doing these trials to work out particularly whether the toxicity of the substances is worth the sometimes very small improvement.

I have decided to have lutetium PSMA based on this thinking. Anecdotally, I have seen some very good responses, but this is a very small sample space and I appreciate that I am taking some risk, however my prognosis is not great and my median survival is approximately 18 months. I think the risk is reasonable.

The question I would like to have answered is how have people tolerated lutetium. I have been in contact with a few who have had very little discomfort apart from dry mouth, which can be exceedingly annoying. If any of you have had lutetium I would be keen to hear of your experiences as the number of people that I can contact is quite small.

I will then start abiraterone and prednisolone. I am tempted to take it now. However, I do not know whether this would reduce the expression of PSMA on the cancer cells and thus make the lutetium less effective. There is so much that is unknown!

Lu177 profile image
Lu177 in reply toMetungboy

Sorry to butt in so late.

Recent journals I have read ( and also the published Peter Mac test results) seem to indicate that Lu177 can be amazing for bone mets in PSMA Avid lesions.

Prior Chemo may reduce the effect of Lu177.

I was told only last week (November 2019) by a senior doctor at Peter Mac - that Lu177 could be 10 YEARS away for general treatment.

(If computers moved as fast as the medical profession then we would all still be using an ABACUS)

For those of you not resident in Australia - Peter Mac (The Peter McAllum Cancer Centre in Melbourne) is the largest, most advanced and most prestigious Cancer Centre in the Southern Hemisphere

Tall_Allen profile image
Tall_Allen

I am a fan of a cocktail approach too - the question is which combination? And when? Some drugs seem to have little or no effect until the cancer has evolved to a certain stage. A recent study of Xofigo and abiraterone showed elevated mortality:

hcp.xofigo-us.com/downloads...

Would a similar effect happen with Lu-177-PSMA? Who knows?

In some studies of PSMA detection, ADT actually INCREASED PSMA expression:

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

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

The_Don5 profile image
The_Don5 in reply toTall_Allen

Posted on another thread I read short term increase then long term decrease.. so hard to tell though one study can oppose another bla bla...

paulofaus profile image
paulofaus

Hi Metungboy, I'm also an Aussie, I live in Perth. I also have extensive boney mets. I have booked a consultation with Dr Lenzo (Theranostics) in Perth about Lutetium177 as I also think it makes sense. There is a clinical trial underway at the moment through Peter Mac centre in Melbourne, which I may be eligible for, but the down-side is 50% of participants will be given Cabazitaxel. I may just pay for the Lu177 shots myself, which I understand run at about $10,000 per infusion and 2 to 6 infusions will be given. Which state are you in? Cheers Paul.

Metungboy profile image
Metungboy in reply topaulofaus

Hi Paul.

I am in Victoria. I don't qualify for the trial because I am still considered ADT sensitive.

I hate the term "castrate resistant" as I don't know any blokes who are keen on the idea!

I am seeing Nat Lenzo and having the infusions in Sydney.

Ric

paulofaus profile image
paulofaus in reply toMetungboy

Thanks Ric. I'm interested to keep in touch to see how you get on, we can compare notes. Cheers Paul.

enzo1 profile image
enzo1

Hallo paulofaus and everybody,

I’ve just finished with Radium 223 which should be very effective on the bones. The result has been almost nothing, in my case; the bone meths went on. I asked to my onchologist about Lu 177. Her opinion is very negative about it. Meybe she is wrong, meybe is because Lu177 is (still?)not standard here in Italy; I don’t know, but I have faith in her. I’m sorry to give a negative opinion. I wish that everything works with you.

Enzo

Metungboy profile image
Metungboy in reply toenzo1

Thanks Enzo

I will let you know how it goes. I went bike riding at Piemonte and lago Di Garda last year. It was difficult without testosterone and just after chemotherapy but we all had a great time in a very beautiful country. I forgot about prostate cancer for a while which was a relief.

Ciao

Ric

enzo1 profile image
enzo1 in reply toMetungboy

Think that I live not far from Garda and we did all the round of garda many times, by bike. Once from home (270 km). I have used my bike until last september ... But let's go on and do what we can!!!

j-o-h-n profile image
j-o-h-n

Greetings Metungboy, You are at great site for information. You will find a terrific bunch of guys and a devoted care givers here.

Good Luck and Good Health.

j-o-h-n Thursday 03/08/2018 5:20 PM EST

laurac2 profile image
laurac2

Hi Metungboy, my husband has recently had his first Lu-177 PSMA 617 in Sydney. He has extensive liver mets. The treatment has hit him badly with extreme exhaustion from day of treatment and still the same four weeks later. He also has some jaundice. It seems to have really upset his liver mets and we are hoping that they are complaining badly as they die off! He was not eligible for the trial at the Petermac as he has already had Cabazitaxel so we are having to pay. Not sure if and when next treatment will be but should find out later this week. We are also in Victoria.

Metungboy profile image
Metungboy in reply tolaurac2

Thanks I am starting in 10 days.

I will let you know how I get on

I hope that I feel better soon

Ric

Kat95 profile image
Kat95 in reply tolaurac2

Hi Laura my husband has liver Mets too and we are thinking of doing lutetium. Just wondering how your husband is doing? Regards, Katy x

The_Don5 profile image
The_Don5

I think another member Tango had lutetium early on pre castrate resistance stage and is in remission.

Tango would you care to elaborate ?

From what I've read early intervention with lu 177 seems to be good as in other therapies I know its advocated with Xofigo and docetaxel?, I would prob listen to Tall before listening to me though.

AlanLawrenson profile image
AlanLawrenson

My brother has had 4 cycles via Theranostics Australia (over 2 years) and is close to their star patient. More than 50 bone mets have gone. Only SE is xerostomia (poor saliva function). He was CRPC on Xtandi before he started. Dose moderation is avoiding xerostomia in some centres.

TA are starting dual radiotracers soon my brother tells me.

Jbooml profile image
Jbooml

Boy am I glad you found this board...an expert clinician in HIV with a metastatic diagnosis....just the guy to shake things up....BTW did no one offer you abiratarone concurrent with the ADT....Its the one thing the powers that be seem to advance with new multimet cases. Seems to work in a wide range of CS or CRPC.

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