Lutetium 177 - PSMA Treatment

Just had a read up Barry and found this

The OPS-201 trial has now commenced in Perth. This IPSEN sponsored trial involves the use of Lutetium-177 OPS-201 for treatment of progressive metastatic neuroendocrine tumours (NETs). Theranostics Australia is one of several sites worldwide currently recruiting (together with Peter Mac in Melbourne, Royal Free in London and Memorial Sloan Kettering in New York). For more information, please visit https://lnkd.in/gtXzzjh

Hi Barry as you know I had the PSMA PET Ga68 at UCLH. At first I was going to have to pay and they quoted £1800 for it but whether that included the report fees I don’t know. But what I did find out is that it is cheaper than the Choline PET so they let me have it NHS. I read a great PSMA /Choline comparison article which I think you linked me in on. As you know neither scan showed ANYTHING AT ALL , despite psa being over 3 at the time and now 7.6 two months ago! The article did say that even PSMA failed to uptake on 8-% of test cases. Not heard of the new treatment but good luck anyway soldier

Hi Roy,
Registered and found info very interesting. It seems to me that there are two principal nuclear treatments in the frame, LUT 177 and PSMA 617. A PSMA (68 GAL ?) scan is the best precursor to the treatment. It appears generally that to be considered for one of these treatments your cancer has to be well advanced and you have to have had several down the line treatment failures. Because of this I feel it is unlikely that I would qualify, at least for some time. However, you mentioned PSMA AC225, presumably another ligand? I suppose that would also be for patients who are further down the line so understand why you are considering particularly if it has wider cancer killing potential. Have you read anything about the likely side effects? Would these be similar to those reported for the other two variants I wonder?

I was surprised that Australia had adopted the PSMA test in so many centres, particularly in Melbourne according to one report, perhaps this has driven the price down. (Not sure if it was Australian or USA dollars but either way 500 is cheap compared to German prices). Maybe worth having scan done in OZ and a no cost holiday thrown in to boot!

NB Have more recently been advised on another forum by a member in Melbourne that the 68 Gal PSMA scan is now 1000 dollars there -still cheap by comparison with some other countries.

Edited by member 07 Feb 2018 at 15:15  | Reason: Not specified

It all made sense until your final two paragraphs but then I think there are some words missing so your questions don't quite make sense. What procedure do you want to breach? And why are you looking for additional scans when there seems to have been no problem with the scans you have had?

Hi Tony,

Yes, it is sometimes difficult to know where best to post as for example what you say might relate to both Diagnosis and Treatment. It is usual for new members to give details of their diagnosis under their profile with a potted and ongoing version of progress under their Bio. (This enables members to easily check before replying to questions where the person is on his cancer journey. by clicking on the person's avatar.) Although it will tend to be lost over time, new members usually give fuller details of their histology under their own initiating thread which they add to from time to time. They do not include all their individual history on another member's thread but restrict this to any relevant particular aspect on which they wish to comment on another's thread.

The following may be of interest to you in view of the questions you ask. Today I received a copy of a letter to my GP from the Royal Marsden. They agree a 68 Gallium PSMA scan would be a good move on my part to help determine where my cancer is but state that they are not in a position to offer this presently within the NHS although they hope to do so later this year. I established late last year that the cost of this scan done privately at the Marsden would be cicra £3,700 plus a fee for interpretation. UCLH do the scan on the NHS where appropriate but have declined giving it to me. When I inquired what the cost of this would be privately, I was told £2,200 as I recall. I believe another member has had the scan done privately in another London Hospital recently for circa £2,500. Alternatively, you could go to Australia and have a 68 Gallium PSMA scan in Melbourne for 1000 Dollars as stated above. This scan can sometimes show where the cancer is and help determine whether the tumours can be treated individually or systemically.

Unfortunately, flights to/from Australia are likely to be too arduous for my wife even with stopovers and because she is rather dependent on me now I could not go without her. This is unfortunate, as apart from the 68 Gallium PSMA scan, there is a possibility of what small scale comparative scans on the same cohort show to be one which revealed all the tumours found in the 68 Gal scan plus others and this is said to be in train in Australia. It is the 18F DCFPyL PET/CT scan developed at John Hopkins available in the US and Canada, doubtless at great cost.

As regards having PCa treatment abroad and follow up in the UK, you will note from my Bio that I had my original RT in Germany but follow up within the UK and subsequent HIFU within the NHS. I did ask my GP if I again had treatment abroad whether I could in need have further down the line treatment within the NHS and was told I could.

Edited by member 25 Jun 2018 at 18:20  | Reason: Not specified

Thanks for that Walter, well worth noting.

Thanks Barry

That is a great help.  I appreciated the guidance on procedures and protecol and will update my profile seperately from now on.

Thanks Lyn

Fair point, I'm not halfway through chemo and I still haven't spoken to the oncologist yet; plenty to learn. There seems different points of view - some say keep big guns in reserve, others say off a thread: "there are peaks and valleys with this disease and hitting the window at the most opportune time is critical. That is when disease is weak and not castrate resistant." Play all your cards too early and there's nothing to fall back on. Leave them too late and lifespan may be shortened. Right now, I'm just trying to learn whether this is an option before arbaritone or not.

PS how on earth have you managed to get to chemo #2 without seeing an oncologist?

PPS you should really start your own thread and copy these posts to it. We are distorting Barry's thread.

Sorry Barry :-(

Hi, Ive not been on here for a while but have returned as the link popped up when I was researching Lu177PSMA617. I am approaching the end of my journey with the readily available treatments having exhausted docetaxel,enzolutamide and more recenty cabazitaxel. I starting Aberaterone + denosomab next week but long term benefits are not expected. I am psa 700+ with extensive bone mets and nodal, but no organ infiltration as yet.

I am currently under  the Christie and my onc agrees that this treatment is my best hope for possible life extension so we are discussing how to access.

He informs me that the Christie will soon be starting a trial of this treatment led by a colleague from Switzerland who is taking up a post soon - no dates as yet. The uncertainty here is that I have already been excluded from all current trials due to the fact that the cabazitaxel tanked my phosphate, which is both very hard to recover and a key element of the baseline bloodwork requirements for trials.

The second option is to approach BUPA for support to fund treatment in Germany , but Im pretty sure they dont cover outside UK  - I'm so lucky to have the full corporate cancer cover, but I'm not hopeful in this case.

Thirdly I will have to self fund which may be a possibility if the treatment is circa 12-20k€ but I have a suspicion that this is only for one session and the protocol is for 5 or 6 sessions. This would be out of my reach.

I will investigate trying to reduce costs through a modular approach, eg PSMA scans and tests funded in UK with just the actual drug administration self funded in Germany.

Given that there are at least 7 clinics in Germany offering this treatment, maybe we could even contact them all and negotiate a bulk buy scenario if there are a few interested .

I'm really focused on this so feel free to pm me if you want to discuss.

thanks

David.

Have you looked at Australia for treatment as the price is lower than Europe.

All the best

Roy

Wouldnt be practical for me if the protocol involves multiple treatments with significant intervals.

When I rang the Paul Strickland Scanner Centre for the 3rd occasion last Tuesday, I got a call back from them offering me the PSMA scan on Saturday 21st April which I have accepted. From the time the Gallium is injected to the time it's all over spans 1.5 to 2 hours. I was told I must then keep at arms length from people for up to 6 hours due to being radioactive. In order to do this I will travel to a B&B on Friday night close to the scanner centre as it's a long way from Devon. I expect to be home in the early hours of Sunday 22nd April.

Whilst there was no movement in my PSA for the previous 3 months, it has now risen by 25% in the last 3 months, so I think this scan is timely. It does not work for 5-10% of men but is said to be a game (treatment) changer for up to 50% of men with PCa.

Time will tell!

All the best of luck. Yes you get a canular and injection ( if they don’t cancel at the very last minute ) then sit in a room alone isolated for one hour. You can still have a wee if you want. I think you get a rudimentary CT and then the PET which takes about 40 minutes. I think I’m PET proof and CT proof and bone scan proof witth a PSA of 24 now and NOTHING visible anywhere. Any ideas Barry ? Really ? Be blunt. They’ve not even mentioned micro Mets !! They just don’t know

Well dear Walter got a result with his psa as low as a Tomcats. I hope you get results full stop. I don’t like being different at all Lyn:-((
Even bad news is becoming more appealing than not having a clue what is going on.

All the best

Roy

Edited by member 16 Apr 2018 at 19:05  | Reason: Not specified

It was not an injection in the buttocks, it was a large syringe without the needle which contained contrast and inserted into the colon lol.

Roy

When I was lastt at Southsmpton General for my bone and CT scan they had a “mobile” PET scanner on the grounds , just like a mobile breast screening lorry. I guess it’s proving good results , just not in my case. At least people don’t need to travel to Oxford or London any more.

I wonder why it is that they were able to image two areas of cancer with a PSA of around 0.9 or 1.0 yet Chris has a much higher PSA and the PET scans etc aren’t picking up anything at much higher PSA level. I was warned my PSA was perhaps too low to pick up anything but my oncologist wanted to try it.

Hope your scan on Saturday goes well.

Ian

Tempting fate proved to be the case!!

I arrived at The Paul Strickland Scanner Centre at 10 am this morning in good time for my 11 am 68 Gallium PSMA scan, only to be told that the machine that 'generates' the tracer had broken down on Friday 20th April and an engineer would not be able to investigate the problem until Monday 23rd April. So a new Saturday date will have to be made when the machine is repaired. I was told that the tracer was bought in from a supplier who also supplies the other London Hospitals using this tracer, so these should also be affected. I was told by a supervisor that the Paul Strickland Cancer Centre like some other hospitals were pressing for this scan because it is so good for up to 95% of patients. However, delays in wider adoption and lack of on site 'generators' was due to tardy approval and acceptance of the scans by the NHS so a lack of funds to facilitate the necessary equipment for more widespread use to include NHS patients and no shared back up at present.

I was told that Paul Strickland had tried to contact me yesterday, although there was no message on my answer phone and in any event I was on a coach to London at 0.5 am so it would have been too late anyway. I stayed in a B&B overnight and then some 8 hours and two buses and a coach home. So 2 full days lost and 16 hours of traveling. The supervisor did say he would refer to his senior manager to see whether they could take this into account somehow, something I will remind them of in need.

Considering the time, distance and cost of travel I hope they can take all of that into account.

Sounds like we need to have more generators but as usual slowness to adopt and lack of funding.......

Best wishes, Ian

Does anyone know of any other centre offering Lu177 treatment other than Docrates in Finland? 

I know a lot of research has been done on this therapy in Germany but don't know if it is offered to patients there other than through clinical trials, where you might end up on the placebo arm! 

Hello Barry 

I hope to be getting accurate costing for the Lu177 radionucleide therapy from Finland in the near future. 

As far as I am aware if one volunteers for a clinical trial there is no charge. In principle there should not be since if on is randomised onto the placebo or "standard therapy" arm one is clearly not receiving the therapy and ethically cannot be asked to pay for the same. 

I am investigating the Finnish clinic not for enrollment in a trial but to receive the therapy. I'll let you know the costs that are quoted to me. 

As regards the Lu177 therapy, it is new but early experimental results and the basic principle of attaching a radionucleide to a tumour cell agonist is not one that is contentious. We cannot know much about long term possible adverse effects (it has not been around long enough) but there is also a basic principle that radiating tumor cells is good (it kills them) and not radiating healthy tissue at the same time is good (less adverse effects, better life quality and lower risk of secondary tumours caused by the radiation). 

Early indications as to efficacy are very encouraging. I enclose the link to the Society of Nuclear Medicine and Medical Imaging "Image of the year 2015". Even if the response shown in these images is an exception, for the guy concerned it is very good news possibly. The image was presented by the same team in Germany that are conducting the Phase III trials. 

SNMMI Image of the year 2015

So I had an interesting chat with the Docrates clinic. They have been treating patients with Lu177 for a little over 18m. About 60 patients treated so far. Initially most were with advanced, castrate resistant metastatic disease to bones and in many cases soft tissue. The doctor claimed he could not tell me the exact data on the outcomes for this group (he claimed Finnish authorities preclude release of such information outside a clinical trial), but he also claimed that results were better than comparable accepted practice chemo. He also claimed that there have been cases of "complete response" i.e. elimination of the metastases. He did not claim that there was no recurrence; in any case he could not know realistically. 

He did say that given the good response to late stage patients they had begun to treat early stage/primary metastatic disease in typically younger patients as a first line of response. He also claimed that Finalnd led the world in radiotherapy expertise and that Varian - the world leading producer or linear accelerator, i.e. x-ray equipment had bought the leading software company in Helsinki. He claimed that the clinic was a world leader in advanced radiotherapy. He cited an example of treating up to 8 metastatic tumour sites with x-ray therapy. 

I cannot verify any of these claims but if true and given their expertise in this area, if they are turning to Lu177 as a primary therapy it might be some indication of its efficacy. 

He said that they treat typically with 1-7 rounds. The mean cycle length is 3. They use PSA to monitor and stop if PSA does not fall. He said they had some cases where 2 rounds were sufficient to show good response. 

The cost is €16,000 for the first round; €12,000 each subsequent round. Each round is 2 days elapsed as an outpatient. This seems to compare with €10-12,000 per round in Germany for each round as a 5 day in-patient. 

There is a review of Lu177 compared with other third line treatments here:

https://link.springer.com/article/10.1007/s00259-017-3895-x