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Lutetium 177 - PSMA Treatment

User
Posted 12 Oct 2017 at 11:25

I am presently researching this for myself as one of the possibilities to deal with PCa that has spread.  I would appreciate it if anybody who has undergone this treatment, has considered it or has any thoughts on it would respond.  It seems this is a development on the 68 Gallium PSMA test developed in Germany and is available at a number of hospitals there and costs are included in this link.  Whether this treatment is available in the UK yet I doubt very much because to the best of my knowledge there are only 4 hospitals in the UK who have even started doing the 68 Gal PSMA scan. 


https://bookinghealth.com/programs/treatment/nuclear-medicine/prostate-cancer-with-metastasis-lutetium-177-psma-therapie


 


 


 


 


 


 


i

Edited by member 12 Oct 2017 at 21:41  | Reason: Not specified

Barry
User
Posted 13 Oct 2017 at 16:01

Hi Folks,

Well I spoke with the Nuclear Medicine departmental manager of the Royal Free Hospital today. I was advised that they do LU-177 combined with something else, mainly for cancers of the gut but not for PCa and not the PSMA test. Furthermore, they were unaware of anybody else doing the PSMA and LU-177 test in the UK. However, I have 'lifted' the following from a Macmillan forum from which it transpires that somebody had a PSMA done at the Marsden to check whether they might be suitable for the PSMA/LU-177 procedure in Germany. " ....


LU-117
MelanieL
Posted by MelanieL
5 Mar 2017 11:52 AM

Hi everyone.

We have recently heard and investigated a therapy currently being tested in Germany with LU-117. It is a type of radiation therapy. Since the Aberaterone has almost stopped working for my husband, we have to think about what to do next, and this therapy seems to be an option. We are wondering if anyone here has ever had it or looked into it?

Thanks.
Reply
gregm
Posted by gregm
6 Mar 2017 12:23 AM

Hi Mel and Paul,

I think you'll find people with experience of Lutetium (LU-177) in the neuroendocrine cancer groups, and I think Ronny.a may have experience/looked into that treatment. Whilst the treatment is for a different cancer, they may be able to give first-hand experience of how they found the treatment.

Greg
Reply
Ronny.a
Posted by Ronny.a
6 Mar 2017 9:03 AM

Hi Melanie, I think you mean Lu-177 or Lu = Lutetium or sometimes called Lutathera. It's much more commonly known as PRRT. (Peptide Receptor Radionuclide Therapy). It's not really on test, they've had it for years across Europe but perhaps not for Prostate. It was available on the Cancer Drugs Fund for Neuroendocrine Tumours but it was removed from routine availability in Nov 2015. NICE are currently re-evaluating it and there's a small chance it will become available later this year for Neuroendocrine Tumours.

With Prostate, they mix the Lu-177 (a radionuclide) with something called PSMA which prostate tumours are known to secrete. This enables the drug to target the tumours and do their thing. This is actally the same method for Neuroendocrine Tumours except they oversecrete a different hormone.


Something also useful to know. Neuroendocrine Tumours also have a diagnostic and surveillance scan called Ga68 PET which works in a similar way. You mix the somatostatin analogue with some radionuclide and it binds to tumours. Then using a gamma camera you scan for pictures and the tumours light up because the gamma camera finds the radioactivity.


So they can do the same for Prostate cancer using Lu-177 and PSMA. Much more sensitive than current methods of scanning. I'm fairly certain they will be using this as part of the German trial as this will not only confirm location of tumours but will also check to ensure the patient is expressing sufficient receptors needed for the treatment to work.

Good luck Melanie
Reply
gregm and 1 other like this
sungura
Posted by sungura
28 Jul 2017 5:57 AM

My husband is about to have a PSMA PET scan at the Marsden with a view to seeing if will be suitable for treatment in Germany. Has anyone else out there had experience with this?

He has bone metastases - castrate resistant prostate cancer - PSA 750 and going up. Has already had enzalutamide, abiraterone, radium 223, strontium, docetaxel etc.

Reply
MelanieL
Posted by MelanieL
28 Jul 2017 7:51 AM

That is really interesting. My husband and I have been very interested in this therapy for months now, the one with LU177 in Germany. However, the fact that a recent CT showed that the cancer had spread to the liver made it necessary to react fast and he is now on Docetaxol. But we still keep LU177 very strongly in mind for after the Chemo. Unfortunately, the PSMA scan is not available here in Ireland, so we would either have to get it done in Germany or else go to England.

Good luck with it all! And please keep us posted!!!

Mel and Paul.
Reply
sungura
Posted by sungura
30 Jul 2017 11:38 AM

Hi Mel, So sorry to hear about your husband and that it has spread to the liver. How is he getting on with the Docetaxel? I believe the treatment in Germany will work for both bone metastases and for cancer that has spread to other organs.

I will let you know how it goes. We live in Kenya, but will come to the Marsden for the scan and then take it from there.
Reply
sungura
Posted by sungura
17 Aug 2017 10:01 PM

We have now had the results of the PSMA PET scan and it seems my husband is suitable for the treatment in Germany so has been referred there which is very exciting. Has anyone else in the community had this therapy? We do not know how long we will have to wait for an appointment and what is involved so it would be useful to get more info."

I was previously monitored by the Marsden before they referred me to UCLH for HIFU and they agreed hat if my PSA continued to rise I could get my GP to refer me back to them. In the light of the foregoing, and because UCLH will not give me a PSMA scan (though as we know they have the wherewithal to do so), because they just want me treated with HT rather than another intervention, I have decided to investigate the Marsden/German route. It would possibly be less expensive to arrange this myself rather than as a package as detailed in the previous link I gave. Should the cost be not excessive compared to other German Hospitals, I would opt for treatment at University Hospital Heidelberg where I have a contact and know the area well, having had my original RT there; also, together with the DKFZ they originated the 68 Gallium PSMA test. I am now above the PSA level they suggested I have the PSMA test there or elsewhere.

Yes I will update with progress as I am aware others may find of interest.

Barry
User
Posted 07 Feb 2018 at 20:23
I had my Ga68 PSMA scan done privately at the London Clinic today. I paid £2588. That includes the reports which will be with my NHS oncologist in two days' time.

Of interest, the Paul Strickland Scanner Centre in Uxbridge has just started offering Ga68 PSMA scans this week. It's a charity with a lot of up to date scanning equipment. If you're private, they charge a fortune. If you're NHS, they charge your trust costs only. I had my Choline pet/ct scan there just over a year ago.

Ulsterman
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.

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User
Posted 12 Oct 2017 at 19:45

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

User
Posted 12 Oct 2017 at 22:23

Thank you for your response and link Barry. By coincidence I contacted the Royal Free earlier today, one of the 4 UK hospitals that do the 68 Gal PSMA scan to inquire what the cost of the scan would be. I have not yet had a reply. However, I can now ask them about  the Lutetium - 177 treatment too, when they get back to me.


It is interesting that the 68 Gal PSMA scan is being adopted quite wide globally. In Australia, a country with a much smaller population than the UK, albeit far more dispersed, a reputable link says there are up to 30 facilities doing this scan (but this does not mean they are all involved in treating or being involved with the Lutetium study).

Edited by member 12 Oct 2017 at 22:25  | Reason: Not specified

Barry
User
Posted 13 Oct 2017 at 07:08

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


If life gives you lemons , then make lemonade
User
Posted 13 Oct 2017 at 10:23
Hi Barry

Yes I am looking into this treatment path if the dreaded chemo I am undergoing doesn't work. I posted some time ago regarding PSMA-LU177 as it looks very promising as is the PSMA-AC225 (Actinium) which has a larger killing radius than LU177 so may be worth a look into. I believe the cost may be in the region of €10000 per procedure and you are in isolation for a few days after, due to being radioactive. Please keep us posted any info you may obtain.

All the best

Roy

Edited by member 13 Oct 2017 at 10:40  | Reason: Not specified

User
Posted 13 Oct 2017 at 16:01

Hi Folks,

Well I spoke with the Nuclear Medicine departmental manager of the Royal Free Hospital today. I was advised that they do LU-177 combined with something else, mainly for cancers of the gut but not for PCa and not the PSMA test. Furthermore, they were unaware of anybody else doing the PSMA and LU-177 test in the UK. However, I have 'lifted' the following from a Macmillan forum from which it transpires that somebody had a PSMA done at the Marsden to check whether they might be suitable for the PSMA/LU-177 procedure in Germany. " ....


LU-117
MelanieL
Posted by MelanieL
5 Mar 2017 11:52 AM

Hi everyone.

We have recently heard and investigated a therapy currently being tested in Germany with LU-117. It is a type of radiation therapy. Since the Aberaterone has almost stopped working for my husband, we have to think about what to do next, and this therapy seems to be an option. We are wondering if anyone here has ever had it or looked into it?

Thanks.
Reply
gregm
Posted by gregm
6 Mar 2017 12:23 AM

Hi Mel and Paul,

I think you'll find people with experience of Lutetium (LU-177) in the neuroendocrine cancer groups, and I think Ronny.a may have experience/looked into that treatment. Whilst the treatment is for a different cancer, they may be able to give first-hand experience of how they found the treatment.

Greg
Reply
Ronny.a
Posted by Ronny.a
6 Mar 2017 9:03 AM

Hi Melanie, I think you mean Lu-177 or Lu = Lutetium or sometimes called Lutathera. It's much more commonly known as PRRT. (Peptide Receptor Radionuclide Therapy). It's not really on test, they've had it for years across Europe but perhaps not for Prostate. It was available on the Cancer Drugs Fund for Neuroendocrine Tumours but it was removed from routine availability in Nov 2015. NICE are currently re-evaluating it and there's a small chance it will become available later this year for Neuroendocrine Tumours.

With Prostate, they mix the Lu-177 (a radionuclide) with something called PSMA which prostate tumours are known to secrete. This enables the drug to target the tumours and do their thing. This is actally the same method for Neuroendocrine Tumours except they oversecrete a different hormone.


Something also useful to know. Neuroendocrine Tumours also have a diagnostic and surveillance scan called Ga68 PET which works in a similar way. You mix the somatostatin analogue with some radionuclide and it binds to tumours. Then using a gamma camera you scan for pictures and the tumours light up because the gamma camera finds the radioactivity.


So they can do the same for Prostate cancer using Lu-177 and PSMA. Much more sensitive than current methods of scanning. I'm fairly certain they will be using this as part of the German trial as this will not only confirm location of tumours but will also check to ensure the patient is expressing sufficient receptors needed for the treatment to work.

Good luck Melanie
Reply
gregm and 1 other like this
sungura
Posted by sungura
28 Jul 2017 5:57 AM

My husband is about to have a PSMA PET scan at the Marsden with a view to seeing if will be suitable for treatment in Germany. Has anyone else out there had experience with this?

He has bone metastases - castrate resistant prostate cancer - PSA 750 and going up. Has already had enzalutamide, abiraterone, radium 223, strontium, docetaxel etc.

Reply
MelanieL
Posted by MelanieL
28 Jul 2017 7:51 AM

That is really interesting. My husband and I have been very interested in this therapy for months now, the one with LU177 in Germany. However, the fact that a recent CT showed that the cancer had spread to the liver made it necessary to react fast and he is now on Docetaxol. But we still keep LU177 very strongly in mind for after the Chemo. Unfortunately, the PSMA scan is not available here in Ireland, so we would either have to get it done in Germany or else go to England.

Good luck with it all! And please keep us posted!!!

Mel and Paul.
Reply
sungura
Posted by sungura
30 Jul 2017 11:38 AM

Hi Mel, So sorry to hear about your husband and that it has spread to the liver. How is he getting on with the Docetaxel? I believe the treatment in Germany will work for both bone metastases and for cancer that has spread to other organs.

I will let you know how it goes. We live in Kenya, but will come to the Marsden for the scan and then take it from there.
Reply
sungura
Posted by sungura
17 Aug 2017 10:01 PM

We have now had the results of the PSMA PET scan and it seems my husband is suitable for the treatment in Germany so has been referred there which is very exciting. Has anyone else in the community had this therapy? We do not know how long we will have to wait for an appointment and what is involved so it would be useful to get more info."

I was previously monitored by the Marsden before they referred me to UCLH for HIFU and they agreed hat if my PSA continued to rise I could get my GP to refer me back to them. In the light of the foregoing, and because UCLH will not give me a PSMA scan (though as we know they have the wherewithal to do so), because they just want me treated with HT rather than another intervention, I have decided to investigate the Marsden/German route. It would possibly be less expensive to arrange this myself rather than as a package as detailed in the previous link I gave. Should the cost be not excessive compared to other German Hospitals, I would opt for treatment at University Hospital Heidelberg where I have a contact and know the area well, having had my original RT there; also, together with the DKFZ they originated the 68 Gallium PSMA test. I am now above the PSA level they suggested I have the PSMA test there or elsewhere.

Yes I will update with progress as I am aware others may find of interest.

Barry
User
Posted 14 Oct 2017 at 12:02
Hi Barry

Check this conversation on another forum. You may need to register

https://www.inspire.com/groups/us-too-prostate-cancer/discussion/psma-theranostics-for-prostate-cancer/


Hope it helps

Roy
User
Posted 14 Oct 2017 at 23:28

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

Barry
User
Posted 07 Feb 2018 at 14:37

Hi All


I started a new conversation, but am unsure as to procedures, so have posted it as per below.


I'm new to this site, have read some scattered posts, and wanted to pull some threads together on this very interesting subject. You are all part of a impressive community; where would we be without the internet!


I'm UK based, 58 years old, and last October was fit, playing my normal weekly squash and running. Felt tired, developed night sweats, thought I'd caught a bug and got some antibiotics from the doctor.


Couldn't shake it off, went back and a blood test flagged a warning PSA of 63 followed by a MRI and bone scan which confirmed diagnoses with T4 prostate cancer 4th December 2017, Gleason 9, spread to lymph nodes, metastactic from hips through spine to skull. Luckily a CT scan shows no spread to organs.


Pretty much over the shock and fear, and have embraced the horror. Started hormone treatment (degarelix) same day, and apart from some expected hot flushes, no side effects, so this January, started chemo as well (docetaxel). Just had my second of six sessions, three weeks apart, and the prior blood tests show the PSA dropping to 7.2 then 1.9 a couple of days ago, which would seem to indicate I'm responsive to treatment.


I'm still getting to grips with the whole thing, but as a layman as I understand it, I'm on hormone treatment for life, the chemo will knock the cancer down, then it's a waiting game to see if the remission is months or years before you become resistant, followed by a second line of defence with drugs like arbiritone and further chemo to try to kick the can down the road.


I've only had an hour with a doctor registrar who took case notes and explained why the chemo was run in conjunction; I'm not meeting my actual consultant oncologist until next month, and want a meaningful conversation with him.


Is this treatment to be used as a card much further down the line once I'm becoming resistant, or should it be looked at once when I'm through the chemo? For my part, anything that attacks the cancer and stops it spreading is surely worth trying, and the sooner the better, but does the NHS get annoyed with breaking their procedures or protocol in case they have to pick up the pieces? Would they only consider this when my PSA is rising and treatment failing after further rounds?


Is PSMA PET scan for suitability obligatory? I read on a thread that someone is getting one done at the Marsden to assess suitability for Germany and wanted to mention this for referral if possible, or know how to get one by paying if not. If you are suitable, will they refer to Germany, and who pays? Is the Royal Free in London recruiting? I'm lucky enough to be able to afford the treatment in Germany, but not sure where to start. I'd appreciate any advice from this knowledgable community, and hope to be around for a good while to contribute.


Thanks for any input.


Cheers,


Tony

User
Posted 07 Feb 2018 at 15:43

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?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 07 Feb 2018 at 16:33
The treatment is basically experimental I believe. You need the PSMA scan to prove it would take up the radioactivity.

The fact that it is highly targeted is clearly appealing - I geuss what is not known yet is whether it works long term..

User
Posted 07 Feb 2018 at 16:42

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

Barry
User
Posted 07 Feb 2018 at 20:23
I had my Ga68 PSMA scan done privately at the London Clinic today. I paid £2588. That includes the reports which will be with my NHS oncologist in two days' time.

Of interest, the Paul Strickland Scanner Centre in Uxbridge has just started offering Ga68 PSMA scans this week. It's a charity with a lot of up to date scanning equipment. If you're private, they charge a fortune. If you're NHS, they charge your trust costs only. I had my Choline pet/ct scan there just over a year ago.

Ulsterman
User
Posted 08 Feb 2018 at 16:03

Thanks for that Walter, well worth noting.

Barry
User
Posted 08 Feb 2018 at 17:01

Hi Lyn


All still a bit new to me; I can see you are very knowledgable and a regular poster - and I love your quote!


I haven't met my oncologist yet nor had my bone or CT scans explained; the urologist saw the cancer off the MRI and started the loading dose of hormone therapy straight away.  I intend to complete the chemo course through to May, and see how my PSA ends up; then, rather than wait for it to creep up, I was considering this PSMA-LU177 or PSMA 617 as possible options to further hammer the cancer down, before more treatment with arbitarone or more chemo from the NHS.


As I understand it, this PMSA test is necessary first to assess suitability.  "Old Barry" has answered one question I had, namely that NHS will continue treatment after Germany if that route is followed.  I look forward to getting to know you better in the coming months and hopefully, years.

User
Posted 08 Feb 2018 at 17:12

Thanks Barry


 


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

User
Posted 08 Feb 2018 at 18:54

I don't really get why you would do that but I am a traditionalist. It seems a bit like running before you know where the race starts to set about choosing treatments that aren't mainstream before you even know full results or what your onco's treatment plan is. There are a couple of trials that throw everything at the cancer straightaway but data is still limited and short term. If it was John, I would be tempted to hold the big guns back for as long as possible rather than use them early and run out of options too soon. But as I said, I am a traditionalist and I would want to talk to the onco in detail before setting my heart on a route that may not be possible or wise.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 08 Feb 2018 at 20:14

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.

User
Posted 08 Feb 2018 at 20:23

The thing is, you are already in fairly uncharted water. Until the last couple of years, chemo was only given in the final stages of life to make a man more comfortable for a little while longer - the bombshell that giving it 'early' (as in, before the man is terminal) might make hormone treatment more successful for longer has thrown into turmoil everything that people thought they knew. But it really is still a new situation, so there is no more than maybe 3 years data on the impact of giving chemo at the stage you are. The chance then of finding any reliable data on the impact of early chemo AND early abiraterone / enzalutimide or experimental drugs is going to be very, very slim.

Check out Si-ness and Irun on here - they were the first two I think to have early chemo in similar circumstances to yours.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 08 Feb 2018 at 20:26

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 :-(

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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 10:43

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 12:36

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 18:10
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 18:59

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 19:04  | Reason: Not specified

Barry
User
Posted 30 Mar 2018 at 20:10

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 20:18
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 20:58

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 11:30
All the best - looking forward to news of your experience
User
Posted 16 Apr 2018 at 15:04

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 15:19

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 16:42

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 16:48

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 19:03
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 19:05  | Reason: Not specified

User
Posted 16 Apr 2018 at 20:42

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 21:07
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 21:17

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 22:23

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 01:20

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 09:33
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
User
Posted 17 Apr 2018 at 15:15

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 21:39

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 22:03

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 10:03
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
User
Posted 30 Apr 2018 at 12:01

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 12:03

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 22:03

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 12:06

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 23:32

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 16:49

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

 
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