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Lutetium 177 - PSMA Treatment

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User

Posted 12 Oct 2017 at 10:25

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

Edited by member 12 Oct 2017 at 20:41 | Reason: Not specified

Barry

User

Posted 09 Jun 2020 at 09:18

I think this is bad news re valleyboy:
https://www.carmarthenquinsrfc.co.uk/6081-2

User

Posted 13 Oct 2017 at 15:01

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
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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 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 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 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 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 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 11:36

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

If life gives you lemons , then make lemonade

User

Posted 30 Mar 2018 at 19:18

Quote:

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

Will do.

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

User

Posted 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 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 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 04 Jun 2020 at 12:18

Yes, I gave an update about a month ago on my DJS - My Journey thread.

I had my last cycle of Lutetium 177 treatment (No 5) on 14th May and as per usual, no side effects apart from some minor fatigue in the 1st week following treatment.

My PSA remains around the 20 mark, but they don't seem so bothered with that.

Otherwise all good.

I have not heard from Valleyboy. I hope he is ok

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"

User

Posted 04 Jun 2020 at 12:32

He hasn't logged in since the end of March - fingers crossed he is okay

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

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User

Posted 12 Oct 2017 at 18:45

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 21:23

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 21:25 | Reason: Not specified

Barry

User

Posted 13 Oct 2017 at 06:08

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 09:23

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 09:40 | Reason: Not specified

User

Posted 13 Oct 2017 at 15:01

Hi Folks,

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

Hi everyone.

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

Hi Mel and Paul,

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

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

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

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

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

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

Barry

User

Posted 14 Oct 2017 at 11:02

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 22:28

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 17:20 | 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.

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

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Lutetium 177 - PSMA Treatment

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