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Leutitium 177, NHS University Hospital Southampton

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User
Posted 15 May 2022 at 22:35

Hi Folks 


I've just read a patient leaflet from Southampton Hospital re their clinic prescribing leutitium therapy. Does anyone know anything about this and if its free since its being delivered from an NHS hospital?


Thanks


Highland lass 

User
Posted 17 May 2022 at 07:42
Good luck with your treatment mission, fingers crossed it works out for you.

I suspect the treatment lottery has always been there, the good news is with modern social media etc motivated patients can cut through the NHS "froth" and find optimum treatment, it's a pity it's such hard work.
User
Posted 17 May 2022 at 04:34

Hi 


I called NHS University Hospital Southampton and spoke with the Nuclear Medicine unit. They have a psma scanner and indeed are offering L177 via NHS and private route. Needless to say I've asked my husbands consultant to refer him to Southampton. I find it shocking and desperate that his oncologist was completely unaware of this hospitals service and that we were told nothing else could be done after radium 223. When we asked about L177 he referred us to the London Clinic via private route. Not sure how things will develop but think private route is upwards of 40k

User
Posted 17 May 2022 at 15:46

The going UK private sector route seems to be about £10K per injection.However apparently this stuff has a short shelf life (6 days). Thus there is unlikely to be much about until the quality issues at the manufacturing factories are sorted out and supply is back to normal.


Regards


Norm

Edited by member 18 May 2022 at 18:07  | Reason: Not specified

User
Posted 17 May 2022 at 17:07
As I have found sometimes, consultant's are not aware of what is happening their own area. Just as well patients keep their ears to the ground, research and post here about advances.

Good Luck Highland Lass
Barry
User
Posted 12 Jun 2022 at 00:27

Hi Norm 


The first infusion went OK. No immediate side effects. However since starting R223 the prednisolone has been stopped and he is experiencing extreme fatigue. Additionally, sleeping a lot and reduced mobility. Pain is well managed for now though. No additional bone strengthener but we are pursuing this.


Wishing you the best Norm. So frustrating about the L177. 

User
Posted 12 Jun 2022 at 01:19
Some men seem to do okay on R223 but for others it can make the bone pain much worse and has to be stopped early.

There was a time when all men with significant bone mets were given zometa but it seems not so common these days, presumably down to cost. It is really important to see a dentist before starting zometa so that any major dental work can be done first.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 21 Jun 2022 at 12:19

The minimum 6 week period suspension of L177 production by Novartis because of quality issues announced in May has now been passed.Cannot see any updates on internet from company.Asked about it at Guys hospital appointment yesterday and told no news  update on this yet.


Regards


Norm

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User
Posted 16 May 2022 at 21:10

Hope someone has some information as it sounds quite interesting. 


Phil

User
Posted 16 May 2022 at 21:26
If nothing known here, suggest you contact the hospital
Barry
User
Posted 17 May 2022 at 04:34

Hi 


I called NHS University Hospital Southampton and spoke with the Nuclear Medicine unit. They have a psma scanner and indeed are offering L177 via NHS and private route. Needless to say I've asked my husbands consultant to refer him to Southampton. I find it shocking and desperate that his oncologist was completely unaware of this hospitals service and that we were told nothing else could be done after radium 223. When we asked about L177 he referred us to the London Clinic via private route. Not sure how things will develop but think private route is upwards of 40k

User
Posted 17 May 2022 at 07:42
Good luck with your treatment mission, fingers crossed it works out for you.

I suspect the treatment lottery has always been there, the good news is with modern social media etc motivated patients can cut through the NHS "froth" and find optimum treatment, it's a pity it's such hard work.
User
Posted 17 May 2022 at 15:46

The going UK private sector route seems to be about £10K per injection.However apparently this stuff has a short shelf life (6 days). Thus there is unlikely to be much about until the quality issues at the manufacturing factories are sorted out and supply is back to normal.


Regards


Norm

Edited by member 18 May 2022 at 18:07  | Reason: Not specified

User
Posted 17 May 2022 at 17:07
As I have found sometimes, consultant's are not aware of what is happening their own area. Just as well patients keep their ears to the ground, research and post here about advances.

Good Luck Highland Lass
Barry
User
Posted 26 May 2022 at 22:20

I see PSMAfore is now recruiting as a clinical trial in two London hospitals for those investigating Lu-17 if hormone resistant


https://findastudy.uclh.nhs.uk/#/trial/626be73b28192a5908294535


This is  different to PSMAddition which is looking for advanced PCa in the hormone naive.


Regards


 


 


 


 


 

User
Posted 27 May 2022 at 09:16

The title  of the trial says phase 3 suspended.So may be on hold because of current L177 supply problems .The 6 weeks stop in production estimated ends mid June.


Norm

User
Posted 27 May 2022 at 10:37
I don't think Highland lass's OP would fit the criteria for PSMAfore anyway - having chemo in the last 12 months is an exclusion criterion
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 09 Jun 2022 at 08:57

Originally Posted by: Online Community Member


Just to let you know I can’t get back re your message as I am too new on the forums to be able to send private messages it seems.  At the moment I am only on hormone treatment as I am still waiting to see oncologist.  Hopefully I will be able to reply in the future.  Sending you and your husband best wishes. 


Hi Folks 


I've just read a patient leaflet from Southampton Hospital re their clinic prescribing leutitium therapy. Does anyone know anything about this and if its free since its being delivered from an NHS hospital?


Thanks


Highland lass 


User
Posted 09 Jun 2022 at 10:57

Just a update on L177 availability.Had psma scan recently to confirm my suitability for this infusion on the NHS at Guys.Met with doctor yesterday who said that there may be delays in the availability of L177 well beyond the advertised 6 week stop in manufacturer .So for present no patients being earmarked for this treatment.


Regards


Norm

User
Posted 09 Jun 2022 at 20:23

Thanks for the update Norm. Hopefully it will be in circulation again soon. I've discovered that patients can get this on the NHS if clinical team make a case on compassionate grounds. Although not licenced by NICE until November it appears clinicians can prescribe it before then if they have applied to the 'Early Access to Medicine Scheme'.


 

User
Posted 10 Jun 2022 at 11:18

 Hi Highland Lass,


See from your husband's bio he started R233 in May.How is he coping with it?


Was told this week that because of L177 non availability that I would be starting R233 later this month.Have been told also need to have monthly Zometa injections to protect against bone thinning caused by R233.


 


Regards


Norm

Edited by member 10 Jun 2022 at 16:09  | Reason: Not specified

User
Posted 12 Jun 2022 at 00:27

Hi Norm 


The first infusion went OK. No immediate side effects. However since starting R223 the prednisolone has been stopped and he is experiencing extreme fatigue. Additionally, sleeping a lot and reduced mobility. Pain is well managed for now though. No additional bone strengthener but we are pursuing this.


Wishing you the best Norm. So frustrating about the L177. 

User
Posted 12 Jun 2022 at 01:19
Some men seem to do okay on R223 but for others it can make the bone pain much worse and has to be stopped early.

There was a time when all men with significant bone mets were given zometa but it seems not so common these days, presumably down to cost. It is really important to see a dentist before starting zometa so that any major dental work can be done first.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 12 Jun 2022 at 13:37

Hi,


Sorry to hear about extreme fatigue and trust  it will only be temporary.Perhaps if it persists the doc. could prescribe another mild steriod to help ?


Stay Strong


Norm

User
Posted 12 Jun 2022 at 23:16

Thanks Norman, good advice ! We had been thinking about the steroid issue so will check it out. 


 

User
Posted 13 Jun 2022 at 12:02

Hi all, my husband Mike, is having a biopsy on Thursday as he was diagnosed with metastatic prostate cancer, spread to his lungs, spine, and lymph nodes.  He started on Bicalutamide a few weeks ago and it must be working as he is feeling really good. Hasnt taken any medication for pain over the last 2 weeks. Started playing tennis and badminton again.  My question is regarding the biopsy, whilst he is on hormone treatment, what else will they do with the results. I am hoping that Mike is 80 years old, birthday on the day of his biopsy I hope his age wont go against him. 

User
Posted 13 Jun 2022 at 16:07

Hi,


The biopsy results should provide a score to inform how aggressive his cancer is.This will help the doctors decide on the best treatment option for his APC.


If he is otherwise in  general good health there are many treatment options to choose from.


Regards


Norman

Edited by member 13 Jun 2022 at 20:24  | Reason: Not specified

User
Posted 21 Jun 2022 at 12:19

The minimum 6 week period suspension of L177 production by Novartis because of quality issues announced in May has now been passed.Cannot see any updates on internet from company.Asked about it at Guys hospital appointment yesterday and told no news  update on this yet.


Regards


Norm

User
Posted 21 Jun 2022 at 21:55

Thanks Norm


 Hopefully it will be in circulation again very soon. 


 

User
Posted 22 Jun 2022 at 08:11

Hi,


Any improvement in your. husband's side effects from the Radium treatment yet? 


In the briefing I had from the doc.about my own likely treatment was told that not uncommon for people to experience worse pain initially as the Radium does its business.But with pain killers most cope and finish the 6 cycles.Scanning during treatment will confirm positive impact of the infusions.


Regards 


Norm

Edited by member 22 Jun 2022 at 09:20  | Reason: Not specified

 
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