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Lutetium 177 treatment

User
Posted 17 Jul 2021 at 18:29

Hello everyone, not posted for a while but brief update:

OH diagnosed advanced Pca in July 2019, Been on hormone injections from outset, docetaxel, RT and Enzalutamide. Recent increased bone pain and PSA doubling monthly. Bone scan shows increase in existing lesions and new lesions in the bones (spine, pelvis, sacrum, hip and thigh) CT scan looks like Enzo has kept lymph nodes at bay. 
Offered cabazitaxel, radium 223 or investigation of Lututium 177. Off to London next week for PSMA PET scan and consultation. 
Need to discover costs and weigh up benefits/side effects/survivability across the three treatments. My husband is not keen on my chemo because of the side effects. He asked what his life expectancy would be if he had no treatment, million dollar question but best guess 4-9 months. So that made him realise that treatment was definitely the only way forward still. 

Has anyone else experienced the Lutetium treatment, looks like side effects not too bad but I suppose still early days on overall survivability? 

Any help or advice much appreciated 

Thanks 

SunnyJane 😊

User
Posted 24 Jul 2021 at 21:00

Update: OH has had a PSMA PET/CT scan and is now having an FDG PET Scan this coming week in London. Referred by his consultant.  Luckily he has health insurance and they have agreed to fund the scans and two cycles of Lutetium. Then he will assessed as to responsive to the treatment and if he needs further cycles we hope to persuade the health insurers to keep funding. 

so many unknowns, fears, lots of travelling to get treatment but he feels it worth it to obtain innovative treatment and with less side effects than chemo. He really struggled with the docetaxel and one of his main choices for treatment going forward is quality of life. 

Will update once we have some results. 

Best wishes

SunnyJane 😊

User
Posted 18 Jul 2021 at 01:58

About 8% of men exhibit insufficient PSMA for the Lu 177 to work so a PSMA scan is a prerequisite to establish whether this is the case so having this scan will establish whether Lu 177 is viable in your OH's case.

You may find you can glean some interesting information from this thread. However, some of the early detail has since changed after it was started. It is now possible for suitable men to have the PSMA scan at a small number of centers on the NHS in the UK that do PSMA scans for example. Much of the earlier part of this thread dealt with the 68 Gal PSMA scan but later posts included those from user name 'Notabene' who had Lu 177 in Finland where it was more expensive than in Germany. Unfortunately, Notabene does not seem to have posted for quite a time. It should be remembered that the cost of cutting edge treatments can vary between centers and countries and go up and down. So one really needs to establish current costs if considering this treatment. https://community.prostatecanceruk.org/posts/t13262-Lutetium-177---PSMA-Treatment

DaveSt is another member who had Lu 177 but has not given an update since he posted in the above referenced thread back in Oct 2020.

 

 

 

 

 

 

i

Edited by member 18 Jul 2021 at 02:30  | Reason: to highlight link

Barry
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User
Posted 18 Jul 2021 at 01:58

About 8% of men exhibit insufficient PSMA for the Lu 177 to work so a PSMA scan is a prerequisite to establish whether this is the case so having this scan will establish whether Lu 177 is viable in your OH's case.

You may find you can glean some interesting information from this thread. However, some of the early detail has since changed after it was started. It is now possible for suitable men to have the PSMA scan at a small number of centers on the NHS in the UK that do PSMA scans for example. Much of the earlier part of this thread dealt with the 68 Gal PSMA scan but later posts included those from user name 'Notabene' who had Lu 177 in Finland where it was more expensive than in Germany. Unfortunately, Notabene does not seem to have posted for quite a time. It should be remembered that the cost of cutting edge treatments can vary between centers and countries and go up and down. So one really needs to establish current costs if considering this treatment. https://community.prostatecanceruk.org/posts/t13262-Lutetium-177---PSMA-Treatment

DaveSt is another member who had Lu 177 but has not given an update since he posted in the above referenced thread back in Oct 2020.

 

 

 

 

 

 

i

Edited by member 18 Jul 2021 at 02:30  | Reason: to highlight link

Barry
User
Posted 18 Jul 2021 at 15:50

Hi Barry

thanks for your kind reply and link to the other thread. It still seems very variable dependent on where you live. Our consultant told us about PSMA treatment and has referred us to The Prostate Clinic in London. So we are embarking tomorrow on a bit of a discovery mission. 
Will my husband’s scan show that he is right for the treatment or not as the case may be? What will the treatment involve, frequency, travelling to London, cost etc. 
He has obtained three opinions on next steps. Reassuringly they have said our consultant in Devon is doing everything they would have done and whatever decision he makes going forward there is no one right decision. As we all know it seems to such depend on how each individual responds to the treatments. 
My husband didn’t respond very well in terms of shrinking cancer or stopping further spread to docetaxel or RT but Enzalutamide has been the most successful. He started last July but new symptoms started occurring in April hence where we find ourselves today. 

So hard for all going through this journey, especially when your decision on treatment in many ways is a bit of a gamble as you have no way of knowing how the body will react. 

I will update once I have more information. I don’t come on here that often but have been very appreciative of reading experiences of others. Do you think it would be helpful to move this conversation over to the other thread, for ease of others seeing the ongoing conversation? 

Thanks again for your reply. 

SunnyJane 😊

User
Posted 18 Jul 2021 at 22:54
Hi Sunny Jane,

The PSMA scan is generally used to try to establish whether a man has mets and how extensive these may be and sometimes this means that treatment may be directed specifically at what has been found rather than go to a systemic treatment. However, where it is already known that a man has mets, the PSMA scan is used for a different purpose. This is to establish that a man expresses sufficient PSMA so a Lu 177 treatment has a chance of working. So if the take up does not show sufficiently in the PSMA scan there is no point in proceding to Lu 177.

It matters not where the PSMA scan is done, although if the patient's consultant can get it done within the few centers that can do it within NHS this is better than having to pay for it. If you have to pay there can be a difference in the amount charged by providers. So the scan may show there is no point in having the rare and expensive Lu 177. However, if the scan shows suffient PSMA, a man could then go on to have the reccomended courses of Lu 177. Unfortunately, just as with any treatment and particularly with something that is fairly new, there is no assurance that Lu 177 will work well in any particular case. I don't know if the treatment is now available in the UK. Anybody who has got passed the proving PSMA test and seriously considering Lu 177 should investigate this aspect. (I am not sure whether 'The Prostate Center' only do the scan but also the Lu 177).

Certainly add to the link I gave with any substantive information as this can be of general interest but probably best if you keep detaited information to your thread for your ease of reference.

Barry
User
Posted 24 Jul 2021 at 21:00

Update: OH has had a PSMA PET/CT scan and is now having an FDG PET Scan this coming week in London. Referred by his consultant.  Luckily he has health insurance and they have agreed to fund the scans and two cycles of Lutetium. Then he will assessed as to responsive to the treatment and if he needs further cycles we hope to persuade the health insurers to keep funding. 

so many unknowns, fears, lots of travelling to get treatment but he feels it worth it to obtain innovative treatment and with less side effects than chemo. He really struggled with the docetaxel and one of his main choices for treatment going forward is quality of life. 

Will update once we have some results. 

Best wishes

SunnyJane 😊

User
Posted 24 Jul 2021 at 23:17
Hope for good response but please let us know regardless.
Barry
User
Posted 02 Aug 2021 at 16:39

Thank you for this post, it is very helpful. If you can advise of how the scans and treatment work, it will be a great help to many. The UK appears to be behind Germany, Australia and the USA on this. If your insurance company lets you see the cost of the scans and the treatments it would definitely be helpful to understand these for those of us without insurance.

Very best of luck. Your husband is blessed to have such a supportive wife. My prayers are for him to respond well. Take care.

 
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