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Lutetium 177 Q and A

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User
Posted 02 May 2022 at 15:17

https://youtu.be/a4e0NsEbk_U

Hi ,

As some of you will know the new treatment above is likely to be approved by Nice for use in NHS later this year.

For those of you like me who are left with nothing much in the medical cupboard it looks promising. This is a excellent Q and A overview of its potential.

Regards

Norm

Edited by member 04 May 2022 at 11:54  | Reason: Typo

User
Posted 02 May 2022 at 15:17

https://youtu.be/a4e0NsEbk_U

Hi ,

As some of you will know the new treatment above is likely to be approved by Nice for use in NHS later this year.

For those of you like me who are left with nothing much in the medical cupboard it looks promising. This is a excellent Q and A overview of its potential.

Regards

Norm

Edited by member 04 May 2022 at 11:54  | Reason: Typo

User
Posted 05 May 2022 at 11:44

Hi,

Would not it be better to try and get  in on the Edinburgh NHS route rather than contemplating India on a self funding basis?

I have heard through the grapevine that providing you have exhausted other treatments a few are getting L177  at some centres on compossionate grounds .Worth mentioning to your doctor  next week.

Norm

User
Posted 18 Aug 2023 at 13:42

I am sceptical of this "5 year" declaration but immensely excited at the same time!

I remember Bill Turnbull getting re-diagnosed by his Onco, to "17 years" after his initial standard 4-5 years diagnosis. Think he died around his 4th year. I do wonder whether famous people with a lot of money can force their doctors to make these statements.

NHS says 4 months average additional life!

But 5 years would be tremendous for us Incurables!

User
Posted 09 Dec 2022 at 19:34

Hello, we notice these posts were earlier in the year.  Has anyone have any updates please.

Barrie and Jeannie

User
Posted 14 Dec 2022 at 22:22
Lut177 is more of an end stage treatment
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 16 Dec 2022 at 12:51

Dean.

My original posting of last May above attaching the you tube video answers some of your question.

Regards

Norm

User
Posted 13 Jan 2023 at 23:02

Yes it is given whilst hormone sensitive privately in Finland, Germany, India, Thailand and Australia but is experimental. 

There is a clinical trial called PSMAddition that can be considered whilst hormone naive ( or first 45 days of hormones and one calked PSMAFore. So they are. Trialling at various stages. 

The Netherlands has the BULLSEYE trial for ogliometastic hormone naive patients too

Lots of trials at earlier stages but they started first with those out of option guys on the VISION trial and those are the only released results. 

User
Posted 03 Feb 2023 at 17:22

Follow on from previous posting.  Saw oncologist yesterday.  PSA up to 2400 and something (the last two digits hardly matter now) which suggests a doubling rate of about 5½ weeks.  Big numbers I'm used to, and the doubling rate is nothing new either.  Was given chance to see the bone and CT scan images.  Tumor on right rib has dissapeared, but more tumors have appeared in pelvic bones - quite literally all over.  One in particular is larger than the others and pressing against nerves, sending pain down my right leg and up into my back.  Chance of radiotherapy and radium 223 - yet to see Doctor who might authorise this.  Some chance of joining a trail, but Lutetium still "in the commissioning process" which could take 6-12 months.  Long sigh...

This may not be a fair to say, but I'll say it anyway.  Commented to oncologist - what's the point of all the effort, money and resources going into finding treatment and even cures for cancer if, when treatments are developed they are not available to the majority of the population?  Blunt and honest response was that companies have to make lots of money.  And we're powerless to do anything about it.

Big pharma showing its' true colours.  When my time is up - possibly later this year, but about 3 or so months earlier than it could be, I doubt I'll be leaving anything to Cancer research.  Again, this might not be a fair thing to say, but it sums up how I feel about the situation at the moment.

Although I've been through lots of chemotherapy and radiotherapy, and have been on hormone treatment for 3½ years I'm in good health (not half-dead as mentioned in another posting in this thread). The numerous side effects of the treatments I've had have all been quite manageable.  I have no other health conditions, and am fit and active.

Lutetium would give me 3, quite possibly more extra months of good quality life.  It's 6 injections.  It's available in other countries for a fraction of the cost here.  If I had £40,000+ I'd be OK, but I don't.  What's a guy to do?

User
Posted 27 Feb 2023 at 19:38
Hi Dean, Very best of luck with the R223 treatment, really hope it works out for you. Keep fighting! Cheers, Nick
User
Posted 21 Jun 2023 at 11:37
Just spoke to my oncologist about Lutetium 17; I am a "great candidate" for it. Not exactly a potential Academy Award, but postitivity and thats currently my favourite medication. Recently finished my third chemo and after a few months break we will look at next steps in August and see if I can get the PET scan.

Does anyone know the progress on NICE approval?

PS: In addition to NICE approval, there are physical and administrative hospital activities needed. For example, it needs to be administered in the Nuclear area of the hospital. They will need space, equipment, staff, etc.)

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User
Posted 02 May 2022 at 21:00
Let's hope people who need it get on NHS. We have several members who have had it or are in the course of having it but I think the former went abroad for it.
Barry
User
Posted 04 May 2022 at 01:26

Hi 

My husband age 55 has just finished 3td session of cabazitaxel. Side effects are awful and psa continues to rise. Meeting with oncologist on 11th. We expect him to be considering lutetium 177 next. Any man with advanced prostate cancer in the UK should be offered this free as standard treatment, if they have psma. Makes me so angry that one area can offer it but not others. All about money and not about the person. FYI Dr [Doctors name removed by moderator] at Fortis Medical Centre in India has been prescribing lutetium 177 since 2016. We had a consultation with her a month ago and lutetium is a fraction of the cost there compared to clinics in UK.. 

 

Edited by moderator 04 May 2022 at 18:45  | Reason: Not specified

User
Posted 04 May 2022 at 11:09

Sorry to hear about your husband's continuing  bad side effects on Cabz.

Is L177 available on the NHS in Scotland yet ?

Regards

Norm

 

User
Posted 05 May 2022 at 03:04

Hi Norm 

Yes, psma scanner and Lutetium 177 is up and running at the Western General in Edinburgh and taking referrals from other areas. This info came from Prostate Scotland who shared it with our local Maggies centre. 

User
Posted 05 May 2022 at 11:44

Hi,

Would not it be better to try and get  in on the Edinburgh NHS route rather than contemplating India on a self funding basis?

I have heard through the grapevine that providing you have exhausted other treatments a few are getting L177  at some centres on compossionate grounds .Worth mentioning to your doctor  next week.

Norm

User
Posted 06 May 2022 at 00:48

Thanks Norm

Yes, we've heard this too. Let's hope L177 is available to all on nhs soon. 

User
Posted 06 May 2022 at 10:04

Hi,

Please keep us posted how you get on next week.

Norm

User
Posted 11 May 2022 at 13:20

Apparently there are quality issues at the plants in th United States and Italy where Novartis manufacturers this stuff and production has halted.The press release says for a minimum of 6 weeks.Anyone hoping to have this treatment soon or undergoing treatment may be affected by this.I am told London hospitals unable to source L177 currently.

 

Regards

Norm

User
Posted 13 May 2022 at 01:00

Hi Norm

Where did you hear about the production issues of L177? Were currently trying to pursue this option as we had another blow this week 

User
Posted 13 May 2022 at 06:37

It seems all clinical trials are impacted plus USA/ Canada primarily with the production in Spain continuing

https://www.novartis.com/news/media-releases/novartis-provides-update-production-radioligand-therapy-medicines

 

 

User
Posted 13 May 2022 at 11:05

The doctor told me about it at my appointment on Tuesday.I then looked on the internet and found the press release from the manufacturer.There is still production in Spain but UK sources from Italy apparently.

Norm

User
Posted 22 May 2022 at 17:11

My OH has just finished 6 cycles of L177 at the Wellington Hospital in London, they were receiving the drug from Finland, it is not manufactured by Novartis and there have not been any supply issues to date but he has now finished the treatment. 

We had to self fund but he was lucky enough to have health insurance that paid for the treatment. 

The side effects have been a lot less than chemo but he does have further bone mets in his spine, sacrum and hip and will be having to consider Cabazitaxel very soon. 

Best wishes 

SunnyJane xx 

User
Posted 09 Dec 2022 at 19:34

Hello, we notice these posts were earlier in the year.  Has anyone have any updates please.

Barrie and Jeannie

User
Posted 09 Dec 2022 at 19:48

The Nice process is due to report in first quarter of next year whether to agree can be proscribed for England.

Apparently they are currently inclined to say does not offer value for money as too expensive.

This may change if manufacturer offers bigger discounts on list price.

Regards

Norm

User
Posted 14 Dec 2022 at 21:52

Meeting with Oncologist on Monday.  PSA up to 820 (from 238 seven weeks earlier), and have reached the end of the treatment road.  Vague indications that some sort of clinical trials may be a possibility in the new year.

Does anyone know if Lutetium 177 can be used at any stage in Prostate Cancer, or does it work best at particular points - say early on before the cancer spreads far, or can it be used at any stage - even if the cancer is well advanced and has started spreading around the body?

 

User
Posted 14 Dec 2022 at 22:22
Lut177 is more of an end stage treatment
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 16 Dec 2022 at 12:51

Dean.

My original posting of last May above attaching the you tube video answers some of your question.

Regards

Norm

User
Posted 16 Dec 2022 at 14:20

I just don't get why it doest become mainstream and available to all who need it. Sure there's the question of it not lasting that long thus financially is it worth it. So many sticking points here and how it's meant to be used. If you can afford if then do it problem being not everyone can thus the poor suffer when it comes to it. I can't rant anymore about it as its so one sided an outcome by the looks of it.

User
Posted 16 Dec 2022 at 23:24
Because it costs around £40,000 for four treatments and, for those who do well on it, it can still only extend life by a few months. I guess NHS trusts have to make decisions about the best use of that £40k?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 17 Dec 2022 at 12:50

That's a lot of money for treatment that is not going to last long. But it still I guess gives people some hope as having limited treatments left is not a good place to be.

User
Posted 18 Dec 2022 at 22:10
Yes and, hopefully, it will get cheaper once there is a formal agreement between the manufacturer and NHS
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 20 Dec 2022 at 16:16

Well here is hoping that big pharma will reduce its costs

User
Posted 23 Dec 2022 at 02:48

Hi Norm

Thanks for he reminder about the video - very informative.  Just have to hope the price comes down to the point where the NHS can justify the cost.

User
Posted 09 Jan 2023 at 23:47

Here's another viewpoint. Lutetium 177 isn't always very successful BECAUSE it's only licenced for castrate resistant cancer in the end stage. It's only used in late stage probably because it's still so expensive.

Have a look at this - https://jnm.snmjournals.org/content/59/supplement_1/529

Low and behold, Lutetium works better when you're not half dead and damaged by chemo and other standard protocol treatments!

Common sense would predict Lutetium 177 having a better effect for longer term survival before Mets have spread too far. I tried to investigate this idea, but was told it's not licenced in the UK until you are castrate resistant - even privately!  If anyone knows if this option can be considered at an earlier stage in another country, please let me know.

(And yes I do know that you need a PSMA PET scan prior to treatment to see if you have the correct protein markers on the cancer cells)

User
Posted 13 Jan 2023 at 23:02

Yes it is given whilst hormone sensitive privately in Finland, Germany, India, Thailand and Australia but is experimental. 

There is a clinical trial called PSMAddition that can be considered whilst hormone naive ( or first 45 days of hormones and one calked PSMAFore. So they are. Trialling at various stages. 

The Netherlands has the BULLSEYE trial for ogliometastic hormone naive patients too

Lots of trials at earlier stages but they started first with those out of option guys on the VISION trial and those are the only released results. 

User
Posted 03 Feb 2023 at 17:22

Follow on from previous posting.  Saw oncologist yesterday.  PSA up to 2400 and something (the last two digits hardly matter now) which suggests a doubling rate of about 5½ weeks.  Big numbers I'm used to, and the doubling rate is nothing new either.  Was given chance to see the bone and CT scan images.  Tumor on right rib has dissapeared, but more tumors have appeared in pelvic bones - quite literally all over.  One in particular is larger than the others and pressing against nerves, sending pain down my right leg and up into my back.  Chance of radiotherapy and radium 223 - yet to see Doctor who might authorise this.  Some chance of joining a trail, but Lutetium still "in the commissioning process" which could take 6-12 months.  Long sigh...

This may not be a fair to say, but I'll say it anyway.  Commented to oncologist - what's the point of all the effort, money and resources going into finding treatment and even cures for cancer if, when treatments are developed they are not available to the majority of the population?  Blunt and honest response was that companies have to make lots of money.  And we're powerless to do anything about it.

Big pharma showing its' true colours.  When my time is up - possibly later this year, but about 3 or so months earlier than it could be, I doubt I'll be leaving anything to Cancer research.  Again, this might not be a fair thing to say, but it sums up how I feel about the situation at the moment.

Although I've been through lots of chemotherapy and radiotherapy, and have been on hormone treatment for 3½ years I'm in good health (not half-dead as mentioned in another posting in this thread). The numerous side effects of the treatments I've had have all been quite manageable.  I have no other health conditions, and am fit and active.

Lutetium would give me 3, quite possibly more extra months of good quality life.  It's 6 injections.  It's available in other countries for a fraction of the cost here.  If I had £40,000+ I'd be OK, but I don't.  What's a guy to do?

User
Posted 27 Feb 2023 at 15:25

Update for anyone interested. I got the external-beam radiotherapy to target the most problematic tumor in my pelvis. Hoped things would go as they had in the past, but not this time. Two weeks after treatment pain is increasing and mobility decreasing, although some days it doesn't seem too bad, whilst others can be a bit of a nightmare. Gradually working my way up through the avalable pain killers... not realy where I want to be.

Talked with oncologist last week about Radium 223. It's my choice weather and when to have it. Advice was that if I still want to do any travelling I should get on with it and start Radium later in the year. I need to be in good health to start it, and once I'm on it there is no travelling, so I need to be resigned to that. Current situation is that I'm not travelling anywhere until the pain issues are resolved - and I really don't want to be taking loads of painkillers with me to cope with problems when I'm away. And of course I have no medical insurance, so being out of the UK when things aren't going too well would be a really bad situation - not worth risking.

So I've decided to have the Radium 223 now. The EBR hasn't worked as it did in the past (possibly because I could only get a dose of about 70% of what I've had before - I've reached the annual limit for radiation to that part of my body), or at least it doesn't appear to have, and I'm staggering around with a walking stick half doped on painkillers. There are no other treatments available, and there's a 50/50 chance of the Radium helping, and if it does work for me then I could up to an extra year of life expectancy. This little nugget of information really picked me up - I could see in 2024 and maybe get to 5 years after diagnosis before I finally "wear out".  And if it does work, the extra time bought might see Lutetium become available on the NHS, so another potential plus.

My PSA continues on its journey through the roof - 27th January 2436, and six days later on 2nd Feb up to 2760 - not that it's really significant anymore.  Although I am kinda curious to see how high it goes before I go.
I guess there aren't many people out there in a similar situation, but it would be interesting and helpful to hear of other peoples experiences at a similar stage in treatment.

Edited by member 27 Feb 2023 at 15:29  | Reason: Not specified

User
Posted 27 Feb 2023 at 19:38
Hi Dean, Very best of luck with the R223 treatment, really hope it works out for you. Keep fighting! Cheers, Nick
User
Posted 21 Jun 2023 at 11:37
Just spoke to my oncologist about Lutetium 17; I am a "great candidate" for it. Not exactly a potential Academy Award, but postitivity and thats currently my favourite medication. Recently finished my third chemo and after a few months break we will look at next steps in August and see if I can get the PET scan.

Does anyone know the progress on NICE approval?

PS: In addition to NICE approval, there are physical and administrative hospital activities needed. For example, it needs to be administered in the Nuclear area of the hospital. They will need space, equipment, staff, etc.)

User
Posted 12 Aug 2023 at 08:30
Interesting interview yesterday on BBC breakfast with Andy Taylor of Duran Duran fame who claims Lutetium will possibly extend his life by another 5 years.
User
Posted 12 Aug 2023 at 11:21

'Lutetium will possibly extend his life by another 5 years.'

Is this claim backed up by the manufacturer of the product? Just curious.

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

User
Posted 12 Aug 2023 at 15:12

I saw that too Jasper and have just read lots of earlier posts about it.

some people have said it helps for months not years!who knows?!

mark 

User
Posted 18 Aug 2023 at 13:42

I am sceptical of this "5 year" declaration but immensely excited at the same time!

I remember Bill Turnbull getting re-diagnosed by his Onco, to "17 years" after his initial standard 4-5 years diagnosis. Think he died around his 4th year. I do wonder whether famous people with a lot of money can force their doctors to make these statements.

NHS says 4 months average additional life!

But 5 years would be tremendous for us Incurables!

 
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