I’ve just found this forum after searching for info on Lutetium 177. Brief history - my dad is still fighting after 5 years from initial bone mets diagnosis at age 58. There has never been any ‘treatment’ options and he’s taken part in various trials. Lutetium was mentioned at his last consultant appointment and now my parents are looking to fund a trip from the UK to Germany. Any contacts or advice welcome...
Is Heidelberg the best place to go?
Is Booking Health a reputable company to book with or easier to book with hospital directly?
Is PSMA testing covered in normal a cans or is it a specific test we need to get done?
What treatment can be offered if you are PSMA negative? (Is it similar but just with a ‘binder?’)
Thank you in advance x
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Keepingdadgoing
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I do not think there is much difference between these clinics.
To save cost, I would look where Easyjet will fly to and arrange the treatment directly with the nearest clinic then. Contact several clinics in parallel, not all may respond.
A PSMA scan is required before the treatment and you can also get that done at the selected clinic. If your dad turns out to be PSMA negative then, you better save the money for the treatment or let the clinic suggest what to do.
Does your father have an attending physician? It's just that if he constantly turns to different specialists, it's unlikely that he will be able to recover quickly. You need to have a trusted person to whom your father can entrust his health in such a case. For example, when I moved from the UK to Germany, I still made an appointment with my doctor. I contacted him using the conference app with doctors (seecure.com/hipaa-compliant.... We have consistently called each other once a month, and he conducted a complete examination of my health.
When I needed a physical examination, he referred me to his familiar doctors in Germany.
You can get Lu-177-PSMA-617 at several locations in Germany, but Heidelberg seems to be the center for development. They are experimenting with Ac-225-PSMA-617 and other radioligands. He has to have a PSMA PET scan, which he can get in Germany as well. If he is PSMA negative he cannot have any kind of PSMA-based therapy - is that the case? If so, he can still have Xofigo for his bone mets.
Allen: I want one Lu-177 treatment. Still castrate sensitive. Near impossible in the states to get a Ga scan outside a Clinical Trial. Going to Heidelberg thinking they'll do the scan and if I pass then I'd like the treatment. Do you know how they work there. Will they do a Ga scan on me and then Lu-177 within a couple of days?
I have no idea. No you can't get a Ga-68-PSMA-11 scan in the US outside of a clinical trial because it hasn't been approved yet. How do you know if your cancer has sufficient PSMA avidity?
I had Lu 177 PSMA IT at the Technical University of Munich in 2016.. Good facilities, very modern equipment, doctors and personnel very nice. They have treated a lot of patients and published good results. The cost is around 9000 euros. A PSMA pet/ct cost around 3000 euros.
My husband taken just about everything they could throw at him over the past 10 years. This was his second round of chem with a cocktail of both doxcel and carbo. He has held up good until now . They both stopped working and the Dr suggested he go to Germany as soon as he could. We know there is no guarantees but might as well give it a shot ...who knows...
Heidelberg is the center for development. However, if you do not want to be asked if they can try out a brand new substance they have just designed, I would go to a different clinic. You can get a good Lu 177 treatment at any one of these.
They offer Lu177 and Actinium 225 treatment as well as a mix of both. They are a research institution so they may have something new and ask if you want to try it. But I would not worry too much regarding this. I just wanted to point out that you can have the treatment at other clinics which will have the same benefit.
I just did a PSMA scan at TUM in Munich (~$2800). They DO have both Lu177 and Ac225, and the head of department used to have a similar role at MSK in New York. They all speak english. I'd just reach out to the Nuclear Medicine department direct and they'll set you up. Logistically, Munich should be easier than Heidelberg (if that's a concern). Airport is 30m away on S1 or S2 line from the Hospital. I'm not sure why people keep saying Heidelberg is ahead in this area. I'd definitely like to know. If you need contact at TUM in Munich send me a message.
We are patient at TUM they wont combine the two (act22 and lu 177) and will start with lu-177 as it has less side effects. They will insist you come off ztiga and xtandi also whilst participating in lu-177 with them. They are friendly and its close enough to airport and beside some good hotels . See my other post on experience to date.
Thank you so much for your post. Can you please send me the contact info for TUM. I need to get a PSMA GA68 done to baseline where I am and Munich is the best place for me. Again, Thanks.
Hello , Im new to this site. I know the post is older , but i would like your contact or any info you can give me on Munich. Thanks a bunches tfor your time and attention take care1
Thank you to everyone for taking the time to reply, really appreciate it. Since posting, Dad has found Dr Baum who he likes the sound of....not sure where we’ll end up yet. Good luck to you all x
Does anyone have any experience of treatment at Saarland University Hospital, Homburg? Would be grateful for any info you can offer. (Would be flying into Frankfurt).
Update - UK Vision Trial: thank you all for replying. After researching Germany, Dad went for a private PSMA scan in Winchester (UK) and has since been accepted onto the UK Vision Trial. He received his first Lu177 infusion a couple of weeks ago - first person in the UK to have it. 2nd Lu177 due at the beginning of July and scans a couple of weeks after. Happy to answer and questions if I can help.
3 cycles complete and he’s like a new man! No pain, catheter is out and he’s back playing golf!! His team can’t believe the scan results - even if it’s not a cure, it’s definitely improved his quality of life over the past few months.
Thank you for your posts! I'm also doing research for treatment for my dad. We are in US and looking at Germany for Lu177 -- Question, did you find anything negative about Booking Health in your research (besides high cost).
Also -- Not sure if getting into clinical trials would be feasible for us - but if you could share info about how you went about that that would be great (want to get this done quickly).
Booking Health is just a very expensive intermediate. It is much better and cheaper to contact directly a clinic. In Germany there are about 20 of them. I am going next week for my second Lu-177 treatment in the University of Bonn clinic ( it is close to Cologne/Bonn airport and Düsseldorf Airport as well). They even agreed to accept me without the standard docetaxel chemoterapy done before
I went to Munich in May for first treatment. I used Booking Health was good made all arrangements provided transportation from airport and hotel .When I was going for the second treatment I dealt directly with the hospital was much cheaper. Booking Health initially took the position that I had agreed to use them for all treatments under the agreement I signed. I disagreed and they gave this up and I made arrangements directly with hospital. The direct cost of hospital was about $10,000 Booking charged about $30,000. Booking charges more for Munich then the other places in Germany. The treating doctor, staff and treatment were excellent .
Hi just reading your post, my husband is looking at options in Germany, what hospital did you use in Munich and would you have contact details. Thankyou
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