A big heartfelt thanks to all the posts on this site; we are newcomers and are thankful to this community. My husband was diagnosed in 2014 with metastatic prostrate cancer with mets in lymph nodes, pelvis & rib. He has had ADT, Provenge, was successfully on Abi+-ARN509 trial for 3 years, 10 cycles of docetaxel, treatment holiday, then restart of docetaxel but switch to cabazitaxel after 3 rounds due to progression in bone and lung. His last PSA rose to 48 from 41.
We have researched many of the articles and comments here on 177Lu and decided to try and pursue this treatment avenue. We are supposedly on a waiting list at Cornell, but there seems to be some supply issues regarding 177Lu (along with a long waiting list). We decided to take the next step and have a consultation / PSMA PET scan at Heidelberg. The consultation was pretty abrupt and quite different to that we are used to the US, with the focus on getting treatment scheduled asap. There wasn't a review of husband's previous scans. We pressed for the PSMA / PET scan results, even asking to see the scans (we normally see other scans at home), but the Dr dismissed this as 'they are too difficult for you to understand'. We were told my husband was a good candidate for PSMA treatment and also the surprising news that he has a liver met. His SUV scores were rattled off after some further prodding on our part. We are still waiting on the scan report.
The recommended treatment was 177Lu+225Ac. Although I have gleamed from this site that Actinium is typically recommended when there are bone mets, the explanation we received in writing for the recommendation was "due to the advanced lung metastatis", which is puzzling to us. Has anyone else heard this, or can elaborate on this?
We're feeling a little uneasy from our experience but don't know if this is typical. We reached out to another German clinic/doctor who told us that 177Lu should always be tried on its own first, but he confirmed they do not offer the combination therapy at his clinic. It seemed also the case that the emphasis in the conversation was on scheduling the treatment.
We are at a difficult crossroads and paying out of pocket for 3-4 rounds of treatments+travel is going to place some financial burdens. We appreciate any information / advice, especially around these questions:
1) What is known about the OS for heavily pre-treated, multiple site metastatis, both bone & viseral? The only report that has come close to this that I can find is this one - researchgate.net/publicatio...
If I interpret Table 4 correctly, those with visceral metastis had an average OS of 1.56? This is quite different outcome than the overall median OS of 10.7 months.
2) Can anyone shed additional light / facts on the potential benefits of the combi 177Lu+225Ac vs the 177Lu only for his situation?
3) This is difficult to type or say, but how do we know if his cancer has gone too far already? We can't get very much guidance about these options from our trusted doc at home and frankly don't have much of a treatment option to come back home to. Our limited experience thus far in Germany has felt more like a sales pitch than an objective consultation.
Thank you in advance for any assistance you can provide.
177Lu-PSMA-617: Trial shows it's more effective than changing ARPIs
Choose Capivasertib or 177Lu-PSMA-617 clinical trial or stick with ADT + radiation?
From Dr. Sperling
Need your suggestions, please
