Lutetium 177 Q and A

User

Posted 02 May 2022 at 15:17

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

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

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