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Radium 223 vs 177 Lu

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User
Posted 10 Feb 2022 at 22:15

Hi All, result of 18 f PMSA PET Scan 23rd December showed widespread bone mets, upset about spread as told only 1 met in 2019, but have to get on with it. PSA yesterday 7.1. 

Appointment at RMH NHS diagnostic clinic 1st Feb offered trial but after discussion, 177 Lu best option and waiting for referral to [Doctors name removed by moderator].

In the meantime our local hospital Oncologist referred to New Cross Wolverhampton for R223 and went to appointment yesterday, appointment was positive but reading conversations on this site many have had severe bone pain. The Oncologist at New Cross said  NICE would licence 177 Lu in September, but there is no certainty, might not, can we afford to wait.

My husband has minimal pain, mainly in lower back after activity, and shoulder after a fall in November. Pain controlled by paracetamol alone. Worry about side effects from R223, particular pain. We have no health insurance so self funding a big commitment for us, but want to make the right choice and believe 177 Lu is the best treatment at the moment and hope it not only gives more time, but a good QOL. Hopefully will start treatment soon.

Would welcome the community comments and any advice 

Edited by moderator 10 Feb 2022 at 23:40  | Reason: Doctors name removed by moderator

User
Posted 11 Feb 2022 at 00:29
Radium 223 doesn’t really treat the cancer per se - it reduces the symptoms of bone mets (e.g pain) and it can help to stabilise weakened bones. Unfortunate that a minority of people experience increased bone pain from a treatment that is hoped to reduce bone pain but they can at least stop it early if it isn’t helping.

Lutetium attacks the cancer wherever it is, not just in the bones (assuming he is PSMA+) and can prolong life. I thought there were a few hospitals offering Lu177 on NHS now but before you pay out large sums of money, it would be worth paying for the assessment to see if he is PSMA responsive.

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

User
Posted 11 Feb 2022 at 06:07
Doesn't the PSMA scan that detected the widespread bone Mets prove PSMA sensetivity? I assumed it would as the Lu binds to the PSMA?
User
Posted 11 Feb 2022 at 16:18

It seems the RM and possibly other UK hospitals are holding back on Lu177 for PCa on the NHS pending approval by NICE. It is being administered privately but is very expensive. You could contact UCLH to check when they might be able to do this on the NHS. This is detailed information about the treatment and what is involved there https://www.uclh.nhs.uk/patients-and-visitors/patient-information-pages/information-adults-having-lutetium-lu-177-treatment

 

Edited by member 11 Feb 2022 at 16:19  | Reason: to highlight link

Barry
User
Posted 11 Feb 2022 at 20:36
The PSMA scan serves two purposes, firstly to identify areas of cancer and secondly to establish a man produces sufficient PSMA so that it will bind with the Lu177. There are several tracer agents used and I know the 68 Gallium does this providing a man produces sufficient PSMA (about 8% of men don't). I don't know whether 18f serves the same purpose but rather doubt it. It will be interesting to learn what UCLH say about this.
Barry
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User
Posted 11 Feb 2022 at 00:29
Radium 223 doesn’t really treat the cancer per se - it reduces the symptoms of bone mets (e.g pain) and it can help to stabilise weakened bones. Unfortunate that a minority of people experience increased bone pain from a treatment that is hoped to reduce bone pain but they can at least stop it early if it isn’t helping.

Lutetium attacks the cancer wherever it is, not just in the bones (assuming he is PSMA+) and can prolong life. I thought there were a few hospitals offering Lu177 on NHS now but before you pay out large sums of money, it would be worth paying for the assessment to see if he is PSMA responsive.

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

User
Posted 11 Feb 2022 at 06:07
Doesn't the PSMA scan that detected the widespread bone Mets prove PSMA sensetivity? I assumed it would as the Lu binds to the PSMA?
User
Posted 11 Feb 2022 at 13:17

Hi LynEyre thanks for your comments, we are waiting today to see if a referral has been sent re 177 Lu.

We have tried to find if anybody is providing this on NHS all say not on the NHS until NICE approve.

We read that the NHS have got an undisclosed discounted price so they must be giving this treatment to some patients but is it on a trial. 

User
Posted 11 Feb 2022 at 16:18

It seems the RM and possibly other UK hospitals are holding back on Lu177 for PCa on the NHS pending approval by NICE. It is being administered privately but is very expensive. You could contact UCLH to check when they might be able to do this on the NHS. This is detailed information about the treatment and what is involved there https://www.uclh.nhs.uk/patients-and-visitors/patient-information-pages/information-adults-having-lutetium-lu-177-treatment

 

Edited by member 11 Feb 2022 at 16:19  | Reason: to highlight link

Barry
User
Posted 11 Feb 2022 at 16:47

we thought that, but had 18 f PMSA PET Scan which we were told was a cheaper scan, to what Genesis Cancer centre ask for, will find out once they receive referral.

User
Posted 11 Feb 2022 at 16:50

Contacted uclh wait to see what they come back with worth a try, thanks for advice

User
Posted 11 Feb 2022 at 20:36
The PSMA scan serves two purposes, firstly to identify areas of cancer and secondly to establish a man produces sufficient PSMA so that it will bind with the Lu177. There are several tracer agents used and I know the 68 Gallium does this providing a man produces sufficient PSMA (about 8% of men don't). I don't know whether 18f serves the same purpose but rather doubt it. It will be interesting to learn what UCLH say about this.
Barry
User
Posted 15 Feb 2022 at 18:18

Hi Barry contacted UCLH they want a referral from GP will not discuss anything by phone or email have asked GP for a referral, will let you know outcome.

Oncologist made a referral to Genesis, got an appointment in Windsor 17th February in person or will Zoom. Zoom would be easiest but wonder if would get more from the appointment in person.

Should be having 1st R223 Friday, deferred until after appointment Genesis 17th February.

Would appreciate any community thoughts Jan

 

User
Posted 25 Feb 2022 at 15:36

Hi Barry Tony has been accepted to receive LU 177 at Windsor waiting for appointment date. Oncologist did say it’s not successful for everybody but after two treatments hopefully would know.

Haven’t had to have a further PET Scan, they have accepted the findings of 18 f PMSA PET Scan done in Birmingham which picked up the widespread mets pelvis, spine and Lt shoulder, the CT Scan 2 months before only found the original 1 met in the RT hip and new met in T9

Waiting now for the Theranostics team to ring with appointment date and talk through treatment and payment of course.

Had signed for R223, and got 1st treatment booked but rang them to defer until we knew about Lu177, recruitment radiologist was not very happy about this. felt a little intimidated by her response, as soon as our appointment is confirmed with Genesis will cancel R223 completely. 

GP would not make the referral to UCLH passed back to Prof RMH. 

 

User
Posted 26 Feb 2022 at 00:24
Great news on the Lu177! Well done for sticking to your guns.

I think it is very sad if medics make us feel bad for seeking alternatives or second opinions - makes me wonder whether they have an ego problem or perhaps just some professional jealousy?

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

User
Posted 26 Feb 2022 at 01:09
Looks promising. Please let us know how you get on.
Barry
User
Posted 05 Mar 2022 at 12:50

Hi following my previous conversations regarding PET Scan, I’m a little confused about PET Scan, as some think that the 18 -f PSMA PET Scan does not pick up PSMA

francij1 you say the widespread mets picked up on this scan show sensitivity to PMSA and Genesis Windsor have accepted this scan, just worried this treatment won’t work Jan 

 

 
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