Need to to to Germany!

[NNKVa]

Any advice, guidance ,suggestions on how to proceed with going to Germany to receive LU-177. My husband was excepted for the trial in NY and went for initial testing and bloodwork then was told a week later not available at this time. So perplexed cant seem to get straight answer. The Dr at Weill said due to funding and co-vid and not sure when it will be available again. There are no standard tx left for my husband that will be effective . His PSA over 300 with systemic metatastic involement. Im reaching out to all who have been this path and asking for advice , guidance, contacts and any info that would be helpful on Germany travels and how to go about. Thanks for your time

[6357axbz]

While you wait for responses use the search function for Germany, Lu177 etc

[Hidden]

I’m sure others will comment . I’ve seen many go to Germany from our ranks here .God bless your husband🙏

[Patrick-Turner]

I live in Canberra in Australia and I traveled only 300km by train to get Lu177 in Sydney from Theranostics Australia.

I began Lu177 on 4 Nov 2018 and with Psa at 25. I had Xtandi added to Lu177 after 3rd Lu177 dose, and Psa went to nadir of 0.32 in November 2019, But then Psa rose to 30 before July 2020, so I had 2 more Lu177 doses and with continuing ADT + Xtandi and also Veyonda for each dose.

Psa went down to a second nadir of about 7, as it is now, but last 9th PsMa scan on 4 Nov 2020 showed new mets with very low PsMa avidity so the docs at TA have now said they won't give me any more Lu177, and didn't say what else they could give me.

Psa has flatlined, and looks certain to rise yet again, and rise fast and not be treatable with Lu177, so I have had my time benefit of 2 years with Lu177, and maybe that's all I get with Lu177.

The problem may be that new mets seen in last Nov 4 PsMa scan don't make much PsMa avidity, but back in last July the PsMa scans showed only bone mets with PsMa avidity, so docs treated me. I also had FDG PET scan showing last July showing no mets that had no PsMa avidity. So it seems like my Pca has mutated or mets without any PsMa avidity have now grown big enough to be seen in scans. In other words I now have more than one variety of Pca that scans can see.

There is much research going on with Lu177 in Melbourne's Peter Mac Hospital, and one patient has lasted 55 months, 4.6 years with Psa very low. It seems he's the luckiest to have had such good response, but some men in the same trial the lucky man was in got far less benefit with Lu177. The mean benefit from Lu177 is about 14 months. I have had 2 years, and I am back to square 1.

However, there are other things and my Psa is only 7, and not 300, so there is a bit time to find out about alternatives.

I don't yet have symptoms of Pca with the now still small bone mets. Lu177 seemed to kill all other soft tissue mets I had.

So as I go along I have learned a lot about Lu177, but right now docs are saying the hopeful days are over.

Some USA men have gone to India for Lu177, because they cannot get to Germany or Australia due to C19 travel problems and / or quarantine requirements.

Its all just food for thought, but the C19 pandemic is preventing some cancer treatments with disastrous results on how long some Pca patients may live.

My Best Regards, Patrick Turner.

[donits]

Hi, Germany is not the only country in Europe that treats patients with Lu177. You can get treatment in Helsinki, the private (expensive!) Docrates hospital and the Orton hospital. You can contact them and compare the prices. Orton is cheaper. There is a coronavirus epidemic all over Europe, the journey will not be easy. You will find emails to those hospitals on the web, or I can give you privately.

[Fightfordad]

My Dad is traveling to Bad Berka in Germany in the middle of December. He must go alone, provide a very detailed and specifically written letter from his doctor here to the German consulate to get permission. We live in Chicago, so he will go to the consulate here. He will stay at the hospital housing until his treatment. Obviously he must provide negative Covid tests several times before he leaves and upon arrival per Germany’s requirements in order to not quarantine. He has been twice since the summer, but this was prior to the new lockdown so it was easier and my Mom could go as well. Different times now. It can be done, but not easily. Good luck.

[WhiteStrat]

I am currently getting Lu-177 treatment at the Klinikum rechts der Isar (within The Technical University of Munich). I am very happy with their protocol and Munich is now one of my favorite cities on the planet. Even with the COVID restrictions, traveling there has been relatively easy. Contact Dr. Matthias Eiber at [e-mail]. He is very responsive and will walk you through the process. Your husband will need to get a PSMA scan here, and send it to Dr. Eiber, before he will be accepted. If he hasn't already gotten one, schedule that ASAP. If your husband ends up going to Munich, private message me and I will explain how to get there and get around. The train system is efficient and easy to navigate.

[TeleGuy in reply to WhiteStrat]

Here's what I said in another thread on this topic. If you get in to TUM in Munich feel free to DM me and I'll send you a guide I wrote on navigating Munich and the hospital bureaucracy.

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The logistics of getting in and out of Germany continue to be pretty straightforward. Once you get set up for treatment you will get a letter of medical necessity that will let you enter the country. Your airline will inspect that letter before they let you get on the plane and the German passport control will look at to let you enter the country. What changes constantly are the quarantine and testing requirements.

Here is the FAQ that explicitly states the medical exception:

bmi.bund.de/SharedDocs/faqs...

I made a series of five trips from December 2019 to June 2020, and I'm thrilled that my PSA is undetectable and lymph nodes continue to shrink (slightly). I've been in touch with others who have been there as recently as October. You can look at my profile and see other responses I've made on the travel topic.

Here is an FAQ on the testing and quarantine requirements (through Google Translate):

translate.google.com/transl...

[lewicki in reply to TeleGuy]

Did you get AC-225 plus LU-177? I have been to the University of Heidelberg four times three in 2019 and last one July 7 2020. PSA is 0.1. Am having similar lymph nod shrinkage . I was told I cannot do any further treatments.

[TeleGuy in reply to lewicki]

My disease is mostly nodal, and I've only done Lu-177. They (Munich) seem to want to save the Ac-225 until later stages because of how it wrecks your salivary glands. I also got the impression that they use it more when people have bone mets. Why are they saying that they can't do more treatments?

[NNKVa in reply to WhiteStrat]

Hello, Is this connected to the Ludwig Maximiian University of Munich. Did you go thru hospital, if so did they set up everything testing , medical passport , room etc.....There seem to be several hospitals to chose from. If you dont mind what is the approximate cost. We have seen some quotes from hospitals on different sites, but Bookhealth quated us was 10.0000 euros more????? Thanks for attention and time..

[NNKVa in reply to WhiteStrat]

Hello, just reading your post.You went thru the hospital . Is the hospital cheaper if so does it cover same things as Book health ? We have been looking to try to find out the most cost efficient way to go. Not saying any of it is cost efficient , but hey it has to be done and what is money of your not here to enjoy!! Thanks bunches for any feed back..

[WhiteStrat in reply to NNKVa]

I went straight through the hospital. The treatment costs about $15,000 euros (for reasons unknown, it was a little cheaper the second time). I can't say enough good things about the doctors, nurses, the admin staff, the hotel (Hotel Munchen Palace), and the city of Munich.

[j-o-h-n]

Greetings NNKVa,Please tell us his bio. Age? Location? Treatment(s)? Treatment center(s)? Scores Psa/Gleason? Medications? Doctor's name(s)? Thank You!!!

All info is voluntary, but it helps us help him/you and helps us too. If you do respond copy and paste it in his/your home page for his/your use and for other members’ reference.

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 11/20/2020 9:56 PM EST

[Bangkok]

Read my posts re: Radioligand Therapy.

[Bangkok]

Also, Thailand is the most safe country on the planet right now with less than 100 Covid deaths.