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Lutetium 177 - PSMA Treatment

User
Posted 17 Apr 2018 at 14:15

Ian,

I don't know whether the same reason applies with the Choline scan but certainly with the PSMA Gallium scan in about 5-10% of men with spread the Gallium does not sufficiently bind with the cancer cells so there is a lack of interaction to be picked up. Guys like Chris therefore pose a difficult challenge. There is another scan which in small comparative trials on the same men showed all the mets seen in the 68 Gallium one but more beside in some of the cohort. This scan is the 18F DCFPyL PET/CT developed by Dr M.... P..... and his group at John Hopkins and is currently being trialed on a broader basis in the USA and Canada. I did contact the coordinator by email but was told it was being restricted to men domiciled in those countries. It reinforces what has been said that further advanced scans (and indeed treatments for that matter), will follow. Another reason why with current technology scans may not pick up hot sports in men with even higher PSA can be due to less concentration and or more widespread dispersal.

As you and several others have experienced, the usual Choline tracer scan has to be brought in and quickly from a provider that has a cyclotron. This has led to a high percentage of batches being rejected as not meeting the required quality standard. On the other hand, Gallium 68 is produced on site using a purpose made 'generator', so should be more reliable (I say tempting fate).

Thank you also for your good wishes.

Barry
User
Posted 21 Apr 2018 at 20:39

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.

Barry
User
Posted 21 Apr 2018 at 21:03

So sorry Barry but a familiar story to me as you well know. Third time lucky for the Choline and third time lucky for the Gallium. They’ve simply not got it quite right yet have they ?

If life gives you lemons , then make lemonade

User
Posted 22 Apr 2018 at 09:03
Sorry to read this Barry. This seems to be par for the course for some of the newer tracers unfortunately.

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

Ido4

User
Posted 30 Apr 2018 at 11:01

I had PSMA Ga68 PET/CT at St Thomas's Hospital in London. 

Had to pay but cost was £1800 - a lot lower than some. 

http://www.sthpetcentre.org.uk

User
Posted 30 Apr 2018 at 11:03

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! 

 

 

User
Posted 30 Apr 2018 at 21:03

Thank you for posting another hospital doing the 68 Gallium scan Neil and less expensive to boot!

We need to establish more precisely what is involved with the Lu177 treatment. Might it cost circa 12K to 20K Euros as has been mentioned earlier and how many sessions are needed? I can't see men paying this sort of money if they might get a placebo!

Barry
User
Posted 01 May 2018 at 11:06

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

User
Posted 01 May 2018 at 22:32

Neil,

It will be interesting to learn what you are quoted for the Lu177 treatment in the Finnish Clinic and how many sessions are considered necessary and over what time frame. The treatment certainly looks promising for some men.

Barry
User
Posted 02 May 2018 at 15:49

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

User
Posted 03 May 2018 at 10:44

Neil,

Firstly, I had a talk with the Pet Scanner people at St Thomas' this morning and it is important that anybody contemplating the 68 Gallium PSMA scan solely for diagnostic reasons or as a precusor to having the Lu177 scan notes the following.

It transpires that you were fortunate in having your scan there for £1,800! It was explained to me they were not sure of the amount to charge you at the time so gave it to you for the price of a Choline scan. They have subsequently decided that the bought in tracer is so expensive that they quoted me a figure of £2,500. This is the cost for a private patient. I was told that it could be done at no cost within the NHS but only for a patient within their hospital group who was referred by one of their own consultants.

As regards the Lu177 treatment, this would most likely be beyond the means of many patients, even if it is a superior form of treatment to alternatives but nevertheless potentially can have some severe side effects.

Interested in knowing whether you go ahead with it.

Edited by member 03 May 2018 at 10:46  | Reason: Not specified

Barry
User
Posted 03 May 2018 at 11:11

Barry 

That is very interesting. I enquired about Ga68 PSMA scan and was told that it was not available anywhere on the NHS. I made enquiries at four other centres where I was led to believe it was available privately and the prices ranged from about £2100 to about £2500. It seems that G&T have decided to price at the top of the market. When I enquired I was quoted the price I mentioned on two separate occasions. It is also of interest that G&T had just published some research into a very low cost Ga68 tracer, so maybe they just figure they should fleece the private sector whilst they can. 

On the question of whether one can only be referred by a consultant within their Trust, I suspect that this is wholly contrary to the NHS constitution, which guarantees patients the right to choose alternative treatment to that offered. I doubt that the information you received is therefore wholly correct or maybe not complete. For example if they are running a trial it is possible that their own consultants have to screen candidates. That would be a different matter. 

As regards the LU177 treatment - yes clearly it is very expensive. I am not sure what the severe side effects are that you are referring to. The published literature suggests that adverse effects are of a much lower order than chemotherapy for example. 

best wishes

Neil 

User
Posted 03 May 2018 at 17:23

Neil,

I wish to state that your name was not divulged to me but the lady I spoke with at the PET Scan Centre, said, when I mentioned somebody had posted they paid £1,800 pound for the scan, she "knew the person I was referring to" and offered the explanation I posted. This lady, whose name I can't recall, also conferred with a colleague called John and came back with the figure of £2,500 for a private patient with referral fron a consultant elsewhere, Also, she volunteered the information that it was available from them on the NHS only for patients of their hospital (Group) and furthermore the "referral must be from a consultant working at the (their) hospital".

Certainly, as an NHS patient one can be referred to an area of another trust for treatment (although we have in the past had members who wanted to transfer to another trust for a treatment not available at their own but were refused by their own trust. A particular case I recall was where a man wanted Robotic Surgery but this was not available at the time from his own trust but this refusal may have been an isolated case). However, as regards scans, particularly the 68 Gallium PSMA which is not yet generally endorsed for NHS patients, the situation is rather different. My consultant at The Royal Marsden told me he hoped to be able to offer NHS patients this scan later this year but could or would not say when. He was happy to refer me to The Paul Strickland Centre for the scan as a private patient though - it being very significantly less expensive than at the Marsden.

In a quite lengthy conversation I asked whether G&T had their own 'Generator' to produce the tracer and was told no and that they had to buy it in specifically for each patient so it was ready just before the scan. This reinforces what The Paul Strickland Scanner Centre told me was the case in as much as they and all the London Hospitals bought in from the one sole supplier. Clearly the hospitals are over a barrel due to lack of competition and also without back up in the event of break down in supply (as happened to me recently. The situation is likely not to improve until general NHS approval for the scan is given and more hospitals do, it thereby increasing the need for more generation.

I did read through the link you gave concerning the Lu177 treatment. It took quite a time because it is long and written in medical jargon. When actively considering it as a treatment it requires even more intensive evaluation and comparison with alternatives. It even states in part that there was some contradictions. Another aspect about which I had some concern that results were largely focussed on PSA figurers rather than extension of life, although perhaps more time needs to elapse before this translates more accurately in longevity. Some of the side effects were covered and in some cases seemed to be severe but as you say this has to be compared with alternatives and is again an aspect I would want to scrutinise more thoroughly before embarking on.

If you do go ahead you will carry the best wishes of all of us.

Barry
User
Posted 04 May 2018 at 08:17

Barry 

I have no wish to gainsay what you were told. I question only what you were told is correct information. After all apparently the same people who told you it was available on the NHS also told me it cost £1800. IN at least one respect it appears that they are wrong. 

Nor am I interested in persuading or appearing to be trying to persuade anyone to choose one or another diagnostic or therapeutic option. 

I have noticed before on a similar discussion thread in another place that if one has the temerity to ask questions or not follow the prevailing NHS dogma or doctrine, it invites criticism. In general I'm sorry about that as I always hope that these fora are places to share information and experience and that is my sole purpose in posting. 

best wishes

User
Posted 04 May 2018 at 09:40

Hi Notabene, I don't think you are being criticised at all and it is a shame if it comes across that way - what you are pursuing (and how it goes) will be really important to others coming along behind you. Plus you are hardly different to Barry, who has gone to great lengths to challenge accepted thinking and source alternatives that were not available to him either on the NHS or even in this country.

The only thing that needs correcting is your understanding that the constitution guarantees people the right to choose alternative treatment to that offered. This is limited to treatments approved by NICE and that the relevant CCG agree to fund. This is why, at the cheaper end of the scale, men in some areas can't get daily Cialis or a vacuum pump despite NICE guidelines to the contrary.

When Si first joined, he and his onco decided to go against accepted knowledge and try something new - and he is still at it. Others have gone overseas for treatments not available here, or have offered themselves as guinea pigs for treatments that have in many cases since become standard or in one case, been disastrous. Those on traditional routes possibly look in awe at people like you and Barry but we all benefit from the brave.

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

User
Posted 04 May 2018 at 10:44

Hi Lyneyre 

I did not say that the constitution guarantees the right to choose any treatment and have it funded by the NHS. Also I am aware of the role of NICE. 

In fact NICE may mandate that all Trusts fund certain treatments, But even if they do not (and as long as a treatment has been licensed by NICE) a local CCG may not arbitrarily refuse to fund treatments. In fact patients have a legal right to know the basis for a local CCG refusing to fund a treatment that is licensed and may be funded elsewhere. 

See the NHS constitution handbook page 50: 

"From 1 April 2013,19 Part 7 of the National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) Regulations 2012 placed a requirement on CCGs and NHS England to have arrangements in place for making decisions and adopting policies on whether a particular drug or other treatment is made available for the people for whom they are responsible. NHS England and CCGs will also have to publish information on those arrangements, and publish reasons for any funding policy or make such reasons available on request.

Administrative law requires that the decisions of NHS bodies and local authorities are rational, procedurally fair and within their powers.

In addition, decisions by the courts have made it clear that, although an NHS commissioner (which since 1 April 2013 includes a local authority commissioning public health services) can have a policy not to fund a particular treatment (unless recommended in a NICE technology appraisal recommendation or highly specialised technology recommendation), it cannot have a blanket policy; i.e. it must consider exceptional individual cases where funding should be provided. 

 

Best wishes

User
Posted 04 May 2018 at 11:34
Originally Posted by: Online Community Member

I suspect that this is wholly contrary to the NHS constitution, which guarantees patients the right to choose alternative treatment to that offered.

You did :-/

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

User
Posted 04 May 2018 at 22:28

https://www.youtube.com/watch?v=NkqizmvqJPo

Originally Posted by: Online Community Member

Barry 

I have no wish to gainsay what you were told. I question only what you were told is correct information. After all apparently the same people who told you it was available on the NHS also told me it cost £1800. IN at least one respect it appears that they are wrong. 

Nor am I interested in persuading or appearing to be trying to persuade anyone to choose one or another diagnostic or therapeutic option. 

I have noticed before on a similar discussion thread in another place that if one has the temerity to ask questions or not follow the prevailing NHS dogma or doctrine, it invites criticism. In general I'm sorry about that as I always hope that these fora are places to share information and experience and that is my sole purpose in posting. 

best wishes

 

Neil,

I thought I had made it clear about the reason for the descrepancy in what you were charged, namely £1,800 pounds and the current price of £2,500 being accounted for by the G&T centre not knowing how much to charge you at the time of your scan so provinding this for the cost of a Choline one.  In the light of experience and more accurately establishing their costs, together with what they currently have to pay for the bought in tracer, they have settled on a price of £2,500.  So there is no being wrong there!  Furthermore, they detailed the restricted circumstances under which the scan would be provided to NHS patients as I advised in a previous post, (although they did not say whether these patients would be scanned as part of a trial.)  I did repeat what I was told to be sure I  had got this right and was told I had).  If anybody else wishes to verify what I was told perhaps they would tell us.  I was very sceptical because it was wrongly reported by a forum member that the Paul Strickland Centre treated both Private and NHS patients which proved not to be the case and caused me and my consultant embarrassment as a consequence having applied as a NHS patient.  I was particularly mindful of this when reporting what I had been told in a direct conversation with the G&T scan centre and one person who double checked with another. So there is no reason to assume what they said on this was wrong either. Incidentally, Kings College have developed a tracer which may reduce the cost of the PSMA scan in due course and I know of another Scan provider who is also working on an alternative tracer. https://www.kcl.ac.uk/newsevents/news/newsrecords/2017/10-October/Promising-new-prostate-cancer-test-developed.aspx

Quite rightly you have not tried to influence anyone to follow a particular diagnostic or therapeutic treatment and I haven't seen any suggestion that you had!

Lastly, the only criticism I have seen regarding unorthodox treatment, is where men have adopted obscure non medical remedies with the expectation that these will 'cure' their cancer rather than established or experimental/cutting edge medical ones.  Like many other members, I have posted details of emerging treatments and developments that may be of interest to me or others; (I started this thread for instance) and have also posted on doctors who think outside the box.  Here is one I will repeat which you may find of interest  :-  https://www.youtube.com/watch?v=NkqizmvqJPo

NB.  Since the above lecture in 2014, more advanced scans are becoming more widespread of which the 68 Gallium PSMA is one, making imaging an ever more important prerequisite to treatment in most cases.

 

Edited by member 05 May 2018 at 09:36  | Reason: Not specified

Barry
User
Posted 07 May 2018 at 15:32

LynEyre:"You did :-/" 

No I didn't - "I did not say that the constitution guarantees the right to choose any treatment and have it funded by the NHS."

I did say say: "I suspect that this is wholly contrary to the NHS constitution, which guarantees patients the right to choose alternative treatment to that offered." 

This is correct. 

The NHS constitution guarantees the right of the patient to choose. It does NOT guarantee that any treatment chosen must be funded by the NHS. 

Two different things. 

User
Posted 07 May 2018 at 16:07

I made an enquiry today about the Lu 177 treatment offered by one of the German Clinics. This was through the "Booking Health" web site - like Trivago for cancer treatments apparently. 

I had a very prompt reply but it was a  it long on "Here is where you can pay with Amex" and quite short on "This is what the therapy program is" 

I have followed up with my standard list of questions and will post on any reply. 

I recall reading somewhere that someone in the UK had had a recommendation from their oncologist for treatment in Germany. Does anyone have any experience of this? 

 
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