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Lutetium 177 - PSMA Treatment

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User

Posted 08 Feb 2018 at 21:53

Saw a doctor/ registrar Lyn; unsure of position, may have been an oncologist, but still to meet my consultant oncologist. This is part of a relevant and knowledgable message I got from another site; will only post here when on subject point for this thread.

Hi:

I believe you should discuss with your doctor to get a Ga 68 PSMA PET/CT study. If positive (chances are it will be since you PSA is 1.9) I believe you could be a candidate for PSMA Lutetium 177 treatment.

The reason to do the GA 68 PSMA study sooner than later is to know if your cancer shows PSMA, since around 20% of the cancers could be PSMA negative. This could be done when in chemo, since the Gallium 68 has a very low radioactivity and its half life is around 4 hours and it will not affect the bone marrow.

All studies and treatment can be done in Germany, Holland, Austria, Australia, etc. The pioneer group is in Heidelerg and my experience as a patient is with the Technical University of Munich.

This is a review article with information about the Lu 177 treatment:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5355374/

When to do the Ga 68 PSMA study and the Lu 177 treatment is something you will have to discuss with your doctors, but the decision to proceed with the Ga 68 PSMA and eventually the Lu 177 PSMA treatment should be your decision. Doctors do not necessarily agree with or offer treatments they can not perform.

One has to be aware that probably there is castration resistance cancer even when one is responding to ADT. I think that these "hormone sensitive metastastic cancers" are really a mixture of resistant and sensitive clones.

This concept could explains why by adding docetaxel to ADT offers a survival benefit. It also explains why most patients in this situation treated with ADT alone do not achieve a PSA <0.2 and even more patients never achieve a PSA <0.05.

The other problem is that chemo may affect the immune system. The immune system is the main gatekeeper once the tumor load has been significantly reduced and the treatment stopped.

If you qualify for LU 177 PSMA treatment perhaps to do it sooner than later will be the best option. As I said after discussing with your doctor and the doctors doing the Lu 177 treatment your will have to make the decision of proceeding and when to do it.

If you are interested in pursuing this avenue of treatment or others, please let me know what you need to get oriented and I will try to help in this regard.

I have contacts in Munich and at UCLA (UCLA has a clinical trial of Ga 68 PSMA, it cost $ 2700 and possible a trial of Lu 177 treatment). The GA 68 PSMA study done in Munich cost about the same and the Lu 177 treatment in Munich cost around 12K euros.

User

Posted 30 Mar 2018 at 09:43

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.

User

Posted 30 Mar 2018 at 11:36

I just want to wish you every ounce of luck and hope and strength.

If life gives you lemons , then make lemonade

User

Posted 30 Mar 2018 at 17:10

Hi David

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

All the best

Roy

User

Posted 30 Mar 2018 at 17:59

Lest there be a possible misunderstanding from a reference in TL's reported post, ULCA refers to an American hospital so should not be confused with UCL (University College London) or alternatively UCLH (University College London Hospitals).

An interesting thought about getting a bulk buy for a treatment. I have not heard of this being done privately for such a medical procedure, although an arrangement may have been arranged with an insurer for it's members. I have been on on car forums where members have negotiated the bulk purchase of a car related item with a supplier or manufacturer but this is a much more straight forward process. I think it could prove more difficult to arrange here to get an acceptable number within a time frame and would and would men be able to meet the still likely high cost? But some might benefit and if you are prepared to investigate this it could be an option for some. A problem may be that any facility offering innovative treatment can attract all the patients needed to take up full capacity without lowering costs.

It is possible that for men who are able to secure funding through their local commissioning body, they may be able to get a PSMA scan done in the UK but everybody I have contacted has said that they won't treat NHS patients with the scan yet.

Whilst the PSMA scan seems to be the start point, any treatment thereafter may depend on what the scan showed and previous treatment already given.

Please keep us informed, particularly as regards developments at the Christie.

Edited by member 30 Mar 2018 at 18:04 | Reason: Not specified

Barry

User

Posted 30 Mar 2018 at 19:10

Originally Posted by: Online Community Member

Hi 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.

User

Posted 30 Mar 2018 at 19:18

Quote:

Please keep us informed, particularly as regards developments at the Christie.

Will do.

ref the negotiation point, I think the fact that there is already a wide spread of pricing across the German providers is an indication of market forces at play , but I'll have to look into it a bit more to make sure I'm comparing apples for apples.

User

Posted 15 Apr 2018 at 19:58

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!

Barry

User

Posted 16 Apr 2018 at 10:30

All the best - looking forward to news of your experience

User

Posted 16 Apr 2018 at 14:04

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

If life gives you lemons , then make lemonade

User

Posted 16 Apr 2018 at 14:19

CJ, you just love to be different!

Barry, is it on the NHS or are you paying? Either way, I hope yours turns out better than Chris's :-/

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 16 Apr 2018 at 15:42

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.

If life gives you lemons , then make lemonade

User

Posted 16 Apr 2018 at 15:48

I know - I was being ironic :-/

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 16 Apr 2018 at 18:03

Good luck Barry, I hope this pinpoints the reason for the PSA. I wonder if there is a different protocol in the UK in the way the scan is carried out,as in Germany I had to drink a litre of a glucose based liquid over an hour, then the infusion followed by being placed in the scanner, where a rather frightening looking nurse arrived with a syringe full of contrast which was duly inserted where the sun doesn't shine then a high pressure line was attached to the cannula and another infusion was administered at high pressure through my veins whilst I was being scanned. It did show up the area of concern with a PSA of 1.6.

All the best

Roy

Edited by member 16 Apr 2018 at 18:05 | Reason: Not specified

User

Posted 16 Apr 2018 at 19:42

Sounds like you had a full body CT thrown in with the PET. I’m not sure why you would have a deep muscle injection in your buttocks ? though. That’s strange to me

If life gives you lemons , then make lemonade

User

Posted 16 Apr 2018 at 20:07

Hi Chris

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

User

Posted 16 Apr 2018 at 20:17

Thank you for your interest and good wishes. I will let you know how it goes. I have not yet received a written confirmation of the appointment and any prerequisites of the scan but bearing in mind what Roy has said about the protocol in Munich, I will contact them prior to the scan if this is not well covered by what they send me beforehand.

I know that Chris was lucky to get his scan funded (although in his case it was not medically helpful), but I was unable to find anyone that would do it within the NHS currently. UCLH might have done it if they thought it would make a difference to my treatment but said it wouldn't. The Royal Marsden are not yet able to give me this scan as a NHS patient even though I am now back under their aegis and as private patient quoted £3,700. But depending on what the scan shows, they may offer further radiation within the NHS. I was told the scan at the Paul Strickland Scanning Centre will be £2,400 so that is what I expect to pay. It will become less expensive as more hospitals obtain the necessary equipment and it gains NHS approval. As a radiologist I linked to in another thread said, this scan is a considerable step forward but he expected that further advances would take place in due course.

Barry

User

Posted 16 Apr 2018 at 21:23

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.

If life gives you lemons , then make lemonade

User

Posted 17 Apr 2018 at 00:20

It may not have been updated recently but this lists the PET scanners in the UK so certainly you don't have to go to London for a PET scan. However, in order to do the 68 Gallium PSMA scan there is a need for an expensive on site 'Generator' among other assets. http://www.ncri-pet.org.uk/pet_facilities.php

Barry

User

Posted 17 Apr 2018 at 08:33

Thanks Barry, interesting to read where the PET/CT scanners are and which have onsite access to tracers. In Edinburgh at Little France I had an F-18 choline PET/CT scan December 2016. I had to wait around 8 weeks as they were only funded for a trial on 4 patients per month. The tracerwas very difficult to make and yield was so poor, the activity so low that I had my scan postponed until they could make a satisfactory batch. I hope the Gallium tracer is more reliable and gives better results.

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

Ido4

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