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Lutetium 177 - PSMA Treatment

User
Posted 03 May 2018 at 11:44

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 11:46  | Reason: Not specified

Barry
User
Posted 03 May 2018 at 12:11

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 18:23

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 09:17

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 10:40

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 11:44

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 12:34
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 23:28

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 10:36  | Reason: Not specified

Barry
User
Posted 07 May 2018 at 16:32

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 17:07

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? 

User
Posted 09 May 2018 at 12:22

Have had two replies from one of the German enquiries. Not quite as helpful as I had hoped. Clearly the enquiry is being fielded by some administrative types who do not have access to the clinical personnel at the centre itself, i.e. they just seem to be taking bookings and payments. 

It took three efforts to discover that they expected me to be in Cologne for up to 10 days for a 2 day outpatient procedure. 

Am making some more progress with Docrates and I have also made an enquiry at the Heidelberg University Hospital, where Prof. Uwe Haberkorn, the pioneer in theranostic radionucleide treatment is based. 

I found a couple of YouTube presentations from him. The commentary is in German but many of the slides are in English and some of the imaging examples are absolutely extraordinary, though some based on Actinium 255 not Lutetium 177 as the radionucleide. Ac225 is an alpha emitter which has even better properties in causing local cell death in tumours than  Lu177 which is a Beta emitter. However Ac225 seems to have greater adverse effects on "Dry mouth". 

Here is an article on the experience with Ac225 compared to Lu177:

http://jnm.snmjournals.org/content/57/supplement_2/1431.short 

Here is Haberkorn's presentation - some of it is very technical but have a look at the images about 10minutes in. 

https://www.youtube.com/watch?v=QebJj1rSKYQ

User
Posted 09 May 2018 at 14:58

Interesting to see they are using alpha and beta emitters.

Alpha does 20 times the damage beta will do for the same dose (I'm a physicist). It is also very localised as alpha can be absorbed or stopped by a thin sheet of paper for example. That's why alpha will induce more local cell death.

 

Good luck with your enquiries,

 

Ian

 

 

User
Posted 25 May 2018 at 16:17
Review of a similar treatment in Australia

http://prac.co/l/yc5faqzd

User
Posted 25 May 2018 at 21:02
Interesting. I think many people would be surprised that Australia is one of the countries so early adopting more advanced scans and treatments. It seems that with the trial for Lu177 there, the cycles are spread over a much longer time frame than adopted in Germany with obvious implications for non domiciled patients.
Barry
User
Posted 05 Jun 2018 at 11:29
Late to the party (haven't logged on in over a year) but I arranged lutetium 177 treatment for my father at Bonn University Clinic. He's had four cycles at a cost of approx £ 8 K per cycle.

Happy to elaborate if there's an appetite on here to know more.

Will check back in a day or two.

Cheers

Jonathan.

User
Posted 05 Jun 2018 at 15:23
Very much hope Dad responds well to the treatment and we would greatly appreciate it if you will keep us advised about this.

Barry
User
Posted 11 Jun 2018 at 18:18

So after consultation with my oncologist I arranged to visit Docrates in Helsinki. They are probably more expensive than the German clinics but they had better availability for me short term and they do not insist on a 5 day in patient stay. 

I had my first round of Lu177 treatment last week. It is a very straight forward process. I had a consultation on day 1, treatment on day 2 and scan and initial post treatment prognosis/ consultation on day 3. The adverse effects have been relatively modest so far - some fatigue, moderate dry mouth which is not permanent and easily mitigated and seems to be wearing off already. I did not suffer from any great nausea but this is also a possibility. 

I will be monitoring PSA fortnightly and have the second session in about 4 weeks time. I am expecting 3-4 sessions in total.

Docrates is not cheap - first cycle was c €14500. Second and subsequent slightly less expensive. The main cost is the Radioisotope at about €7000, which has to be pre-paid a fortnight in advance. It is a very modern, well-equipped centre and the staff are very professional and all spoke good to very good English. 

I was told that Phase III trials of Lu177 are in progress in the US and results expected soon. The comment made to me was that is the trials are successful the cost of the isotope will go up!

User
Posted 26 Jul 2018 at 11:30

So have now had two cycles of LU177 and probably at least two more to go.

Last PSA result shows a drop in a month from 80 to 22. I hope this can continue.

Docrates is expensive compared with the German clinics it seems, but they also seem to know their stuff. They treat on faster cycles than the German clinics also.

The treatment itself is unexceptional - a canular in a vein to drip the isotope in, followed by saline to flush unabsorbed isotope out of the kidneys, lever, bladder etc. Then dour hours with ice packs on the cheeks to limit uptake into the salivary glands. The latter causes a temporary dry mouth, which is a nuisance rather than a major problem and seems to recede in over about 2-4 weeks.

One other piece of information - the radiology nurse told me that due to the trials in the US and the patent holders being in the US, permission to use this technology for any new patients in Europe was being withdrawn pending the trial results. I have not yet been able to confirm this.

User
Posted 01 Aug 2018 at 06:46
 
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