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Lutetium 177 - PSMA Treatment

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User
Posted 09 May 2018 at 11:22

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 13:58

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

 

 

Ido4

User
Posted 25 May 2018 at 15:17
Review of a similar treatment in Australia

http://prac.co/l/yc5faqzd

User
Posted 25 May 2018 at 20:02
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 10:29
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 14:23
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 17:18

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 10:30

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 05:46
User
Posted 21 Aug 2018 at 08:23

Latest PSA results two weeks after the third round are 8.5, down from 22. 

Scans at the time of the third round (i.e. showing the effects of 2 rounds) show reduction in volume in all tumour sites. 

Some recently published results of a longer term study tested Lu177 as a first line treatment versus all other "standard therapies" applied to metastatic disease. The results were remarkable. Out of 500 men in the trial, 18 were treatment naive when they received LU177 therapy. All still alive at 55 months, i.e. the median overall survival can not be calculated since no one died over the period. 

Out of the group who received Lu177 having previously received chemo drugs (which eventually fail) the median overall survival after Lu177 was 19 months. 

Others may know that Ac225, as an alpha emitter, is even more effective at removing metastatic tumours, but carries the adverse effect of permanent loss of the salivary glands. Some recent trials have been experimenting with techniques to protect these glands from damage and apparently have had some success with botox injections. If a way can be found to save the salivary glands, and no other long term adverse effects emerge, then Ac225 will be the radioisotope of choice. 

User
Posted 06 Sep 2018 at 11:51

Have just returned from the fourth round of treatment in Helsinki. 

Whilst there I had another PSA test - that is about 2 weeks after the last one here in the UK. My PSA had fallen from 8.5 to 3.3 in that fortnight and before the latest round of treatment. Also scans taken at this visit (which show the results after the previous round has had the time to take effect) show many lesions have disappeared and the largest has reduced in size about 75%. 

Naturally I am encouraged by these results and hope they can continue. 

The adverse effects from this treatment for me have been some dry mouth which lasts about 3-4 weeks and some fatigue immediately following. Neither are greatly life limiting. 

 

User
Posted 06 Sep 2018 at 13:37
Fantastic
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Sep 2018 at 15:20
Very pleased for you and hope to learn of further excellent progress next time.
Barry
User
Posted 06 Sep 2018 at 18:09

Really good results.  Hope it continues.

Ulsterman

User
Posted 06 Sep 2018 at 21:22

Great results.

Ido4

User
Posted 07 Sep 2018 at 08:41

Thank you everyone for your kind words - they are really appreciated. 

I only post this information here so that others who may be interested can be informed. I find it unethical that none of the charities in the UK will carry official information about any therapies that are not offered via the NHS. 

My wife is a nurse and has worked for the NHS for decades. I know how hard she and very many of her colleagues work, how dedicated they are and how much they care for their patients. I also know from her experience how stifled in bureaucracy the NHS is, how wasteful it often is and how difficult innovation and learning is due to an overriding culture of hierarchy and dogma that often strays into outright bullying.  

I mention this in this thread because no one who consults with an NHS oncologist or researches information via the UK Prostate Cancer charities is likely learn anything about innovative therapies such as Lu177 617 PSMA. To my knowledge there are experimental uses of this and similar radionucleide therapies and, in some cases, Phase 3 trials, in the US, Germany, Finland, Australia, South Africa and even Myanmar! 

I would urge anyone meeting an oncologist with metastatic prostate cancer to demand information about new and innovative therapies, whether they are licensed for use in the NHS or by NICE or not. Ultimately we have the absolute right to take decisions about our lives in our best interests. In order to do that we have to be fully informed. 

Whatever the eventual outcomes might be in my own case, I sincerely hope that anyone who reads about them is motivated to research, learn and demand more from their clinicians. 

User
Posted 07 Sep 2018 at 21:37

Great thread. We do see two distinct camps of thought - the ‘do not google’ Advisors and those who realise they need to research in order to get a full picture of opportunities.

Good luck with the treatment

Clare

User
Posted 09 Oct 2018 at 12:21

Quick update. Had a further round of Lu177 PSMA in Helsinki last week. This should be my last. Scans show elimination or reduction in lesions of c 80-90%. Hope more to go. Last PSA was 1.77 - the lowest I have ever tested. The professor of Nuclear medicine suggested this was a very good result but he could not promise that it would eliminate the final few lesions completely. Will have to wait for next PSA and consultation with my oncologist to see what might be next. 

In any case will need a scan in about a month's time which will have to be PSMA based, either here or in Finland. 

 

User
Posted 09 Oct 2018 at 12:45

This is really good news. Thank you for sharing. I’m sure lots of us will be following in your footsteps over the next year or so. I’m hoping to have the treatment after radium, so have been following news from around the globe on this very closely. Thanks again and congrats. 

User
Posted 09 Oct 2018 at 13:15

Notabene

I hope I don't ever get to the stage that I might need this treatment, but you make the point well that through a forum such as this one, we can all learn from each other.  I've certainly gone to my GP and oncologist and have received better treatment because of what I have learned from this forum.

So, thank you for your posts and good luck as you move forward.

Walter

 
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