Leu 177 and Advice

[jonnycrouch]

Hi Everyone ive been a member for a cpouple of years but havent posted much. I was Diagnosed with a PSA of 5000 and a gleason 9. Ive only had ADT which worked really well for 18 mnths . Im about to start some leutetium 177 psma therapy here in australia and wondered what people thought about combining it with zytiga or xtandi. Im now on xgeva. Ive used lots of natural supps, juice,meditation etc but my PSA is around 120 now and I have mets. Just wanting thoughts. I wasnt offered chemo at the start of all this. The leu177 has the least side effects and has been effective in Germany. Recently Ive been getting very tired and some bone pain, but im still working and working. thankyou in advance.

[bb66hotflash]

Be careful with the XGEVA, I had developed ONJ and did not know until I had a tooth extracted and the oral surgeon did not pay attention to my warnings about the XGEVA (denosumab).

[jonnycrouch in reply to bb66hotflash]

Thankyou

[joeoconnell in reply to bb66hotflash]

need more info , more detail

[StephanB in reply to bb66hotflash]

Hi, I am also on Xgeva and have been worried about ONJ. I'm a healthcare professional so pretty body self-aware but wondered how it would crawl up on me and "feel". How did you not know before tooth extraction and what transpired after it?

[bb66hotflash in reply to StephanB]

There is no way to know in advance and I didn't feel anything out of the ordinary. I knew when after the tooth was pulled and the "extraction hole" did not close up right away. There are ways to manage this at the time of extraction, the oral surgeon should know this. All this information is available on the internet, just go read up on it.

[Hidden]

Hi , are you on the lutetium trial or are you paying ? Did they tell you why you weren’t offered chemo ?

[Chask]

I would like to know more. I am in Australia and the only use of Lu 177 I know of was at the trial of 30 patients at the Peter Macallum Cancer Centre in Melbourne. Was not aware that it was being offered as a proven treatment.

Where are are you located and who is offering the treatment? Would also be interested in costs and financial support from Medicare and/or private health funds.

Regardless of my questions I wish you the best of luck.

Chas

[Hazard in reply to Chask]

Hi Chas, you can buy Lutetium 177 treatment from Theranostics in Perth theranostics.com.au. I looked into this 6 months ago when my PSA started rising immediately after my salvage radiation. Each shot of LU177 costs $8k, and they can deliver this in Melb and Syd so you dont have to fly to Perth for treatment.

But - as I am at a relatively early stage of advanced PCa, my specialist advised that there was a high risk of leukemia in 3 years time and I was convinced not to use it. The Peter Mac trials are for men with mCRPC so I guess the risk of leukemia in a couple of years is low down on their priority list.

So its definitely worth talking to the Theranostics ppl. It very much depends on your own individual situation.

Regards, Hazard

[jonnycrouch in reply to Hazard]

Hi Hazard- gulp didn't know about the leukaemia, Nat lenzo didnt mention it - he seemed to think he could stablize the cancer and keep it at bay for some years. Must say they have been fantastic to deal with thanks John

[Hidden in reply to Chask]

Hi , it is offered in Australia but it is not covered by any health insurance or Medicare. The trial is very small and my guess is it has already been filled. If you google theranostics that should give you the site with the most information on what is available . They are based in Perth . The cost is $9600 per injection and , depending on success/ failure up to 8 injections could be provided over a period of 2 years or so. I have had a consultation with Dr Lenzo but am holding off at present as Xtandi seems to be working for me at this moment in time.

[enzo1]

If it can help ... I also asked to my onchologist (Italy) about Lutetium, but she told me it can be used only on PC that have a neuroendocrine component (bioptic diagnosis), not in my case. I had other chance , then; so I didn't investigate more ....

Enzo

[AlanLawrenson]

My 77 year old brother had successful Lu-177 PSMA therapy earlier this year in Sydney. He had NOT been on chemo by choice. He was on ADT but the cancer stopped responding. He had two injections about 6 weeks apart. His PETscan before he started showed bone mets everywhere and some lymph node invasion.

Scan taken six weeks after second injection showed all but one met had gone. That one on rib was very small compared to pre-treatment spot. PSA still continues to drop. PSA now below 0.05 from 9 pre- injection. He continued ADT and Xtandi during his treatment.

I discussed his situation with leading uro specialist last week. He and I conjectured that the multi-faceted treatment might have combined to give him the great result, which appears to be better than most other treatments done by Theranostics. No info given re possibility of leukemia in 3 years.

Don't think my brother had a neuro-endocrine component to his PCa. It is known that this treatment doesn't work on about 15% of men due probably to "weak" PSMA receptors on PCa cells. I understand that a test has been developed or is being developed to indentify these men, to save them $$$$ and angst.

[jonnycrouch in reply to AlanLawrenson]

Thankyou Alan very helpful- im thinking of combining xtandi with the leu177- that is an outstanding result for a 77 year old man im only 63. Very positive thankyou -john

[Hazard in reply to jonnycrouch]

Jonny, pls review my response to Alan. I am a bit younger than you, but 63 is still young. Have you discussed Lu-177 with a radiologist (not one associated with Theranostics) and what do they say?

[jonnycrouch in reply to Hazard]

No but I will thankyou maybe the xtandi is the way to go my cancer is hormone resistant and I have mets, some bone pain and am very tired. Ive tried to be judicious in my choice of therapies - hence not chemo and external beam radio because they are carcinagenic maybe this is to ill speak to a radiologist thankyou so much for your response jonny

[Hazard]

Hi ALan, looks like Theranostics is not talking about long term side effects. But pls review these comments by Professor Michael Hofman who runs the Lu-177 trials at Peter Mac.

afr.com/lifestyle/health/nu...

"In our early experience with it, no significant acute side-effects are observed ... But we don't yet have data on the longer-term response and toxicity."

"We need to be judicious about where we place it in a man's life expectancy because some radiotherapeutics can eventually cause cancer themselves."

The second quote is the more pertinent one. I am only 55 and hopefully have many years to go before my cancer becomes carstrate resistant. My specialist who has discussed this with the Peter Mac team was quite clear about the risks of other cancers and we agreed that at this stage of my journey, its not worth the risk. However if i was 77 and had advanced metastases (with lower expectations of survival) then its definitely worth the risk. As I said earlier - its not a blanket approach. Each case needs to be assessed on its own merits.

[AlanLawrenson in reply to Hazard]

Hazard. I think your approach is spot on. I too would not do Lu PSMA at your age and with your progression of the disease. However, if you are Gleason 9 or 10, with bone mets, then the impact of of radiation damage has to weighted against its future negative impact against much more certain negative impact of Stage 4 PCa.

I had 28 doses of Proton Beam Therapy Radiation in Korea in 2013 to avoid conventional radiation damage. I discuss all this in my two books on PCa.