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Lutetium 177 Q and A

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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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