I am sitting in my hospital room in Heidelberg hospital and thought I would send this update.
To get an appointment at Heidelberg, one needs to go to Ukhd.org and fill out the online application. You will need to scan many of your records into your computer and then upload them on the application. It is also very important to upload all the images from your Psma scan, otherwise you will only receive the Vision trial dose of Lu177. They will not be able to dose adjust based on your scan, and you will probably not receive Ac225.
Within 24 hours of sending my application, I received an email that said I had been accepted for treatment with an appointment date in 2 weeks. I was given an IO number to be used for correspondence and questions (international office).
I booked airfare from JFK to Frankfurt. Only $650 round trip. (Round trip from Norfolk was twice that amount) so I had my appointment with Dr Drake on Tuesday, and flew out that afternoon. Flight was 7 hours. Arrived Frankfurt at 5 am. There is a train station at the airport where you can buy tickets to Heidelberg with a transfer in Mannheim. Train ride was 1 hour. Took a cab to the hotel. It could not have been easier.
We are staying at a cute, clean, well appointed boutique hotel called Rafaela, run by a very nice woman named Maria. Only $100 per night. Walking distance to old town. And Heidelberg is a beautiful charming city on a river with a castle. Wonderful restaurants. Lots to see and do. There is a bus stop 1 block from the hotel that takes 5 minutes and drops you right outside the Kopfklinik. Alternatively you can walk the 20-30 minutes.
Today I arrived at the clinic at 8:15 for inpatient registration. It was a breeze despite a slight language barrier. Then up to nuclear medicine on the 4th floor. There nurse Tomas told us the rules regarding radiation safety. Visitors are limited and must remain behind a 4 foot protective wall. My clothes upon discharge must be placed in a protective bag until washed at home.
The doctor starts your IV and draws your blood. (BTW, you do not see Dr Haberkorn.) He answers your questions and you sign the consent. At 12:30 he injected a combination of Lu/Ac at a dose of 7.4 and 2.0 Mbq. Direct push, no discomfort. Three hours later you go for a scan to determine the radioligand uptake by the tumor. My tumors were intensely PSMA avid, and fortunately because of this I had a great uptake of radiation by the tumors. I’m highly radioactive, and the doctor said this was a very good sign, and bodes well for a successful treatment. I will remain in the hospital for 2 days
Follow up will consist of a PSA every 3 weeks. He warned my PSA may rise due to tumor kill. Also routine bloods every 2 weeks. My next appointment is in approximately 7 weeks on March 17. Doctor said I would most likely get 3-4 treatments. Cost of first treatment is 9800 euros.
I am pleased with my choice so far. Heidelberg oozes positive energy. The hospital seems to be very organized, efficient, and the staff are friendly, well trained, and speak English.
Back to my cheese, cracker, meat, and vegetable tray.
Rex Waterbury
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Rexwaterbury
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Thanks for the detailed update. That helps many who may be intimidated by the process. How are your salivary glands doing? I guess if you can eat crackers, it's not too bad. Do you pee into a normal toilet, or do they collect urine? Are you touring Germany for 7 weeks or flying back and forth?
No salivary issues yet, but doc said 100% of patients will get some dry mouth, better in 12 months. No prevention recommended. Pee into a normal toilet. Flush twice. Wear a pad at night in case of incontinence. Will fly back on Tuesday. Will wait until the spring in order to tour Europe between cycles 3 and 4.
Thank you for your post and I wish you the best with this treatment. It is very helpful. So I'm estimating that it is approximately ~12K in U.S. dollars per trip for cost/travel/etc. So you will be looking to spend up to ~50K out of pocket, correct?
This trip including airfare and lodging will be around $13,500 for my wife and me. I have not been told what subsequent trips will cost, but $50-60,000 seems about right.
So kind of you to report and this is great information for future.
ALL best wishes.
We are with you all the way and in spirit.
Much appreciated! Thank you for the simple, yet descriptive explanation of how it all works. Heidelberg is indeed very beautiful as is the entire Rhine River country. Those vineyards on the steep hillsides planted by Romans (I think) hundreds of years ago are amazing. Wishing you much success and looking forward to more posts with helpful details.
Hi Rex, how do you feel after the first round? Was it difficult? Also, is the Lu 177 a treatment regimen that is only done once or can you do it again later when you may need it? Thanks
It’s been about 9 hours since my injection. No adverse effects except I’m tired, but that could be from jet lag and laying around all day. No nausea or dry mouth. They gave me an anticoagulant injection tonight, and I will start a 7 day course of steroids tomorrow. Doc said as tumors attacked they can swell and become painful, thus the steroid.
This is an excellent report. Thanks for all the details. You may be helping other men who make the choice to go to Germany for treatment. It sounds easier than getting into a trial in the USA!
I am very grateful for your posts, and this is the kind of feedback that ALL us so badly need!! A very refreshing post and why this site exists and is so valuable to so many.
I would ask that you keep us updated as the treatments proceed, so we can track he entire process, thus making it much easier for some who may wish to follow your path.
You are quite a pioneer Rex. Thanks for opening this pathway. I am impressed with the efficiency of the program over there. Are there any stats indicating the success of Germans or other Europeans who have gone through this regimen already?
Well I don’t know about being a pioneer. There are others on this site that have come here before me. Doc yesterday said they have a 70% positive response rate. He just now left my room and told me I should be optimistic based on my amount of radioisotope uptake.
I am just out of the hospital in Munich having had a similar experience. But they have vacuum toilets and no anticoagulants.
I asked what happens if we are able to kill the majority of PSMA positive cells, will we be left with a monster that we don’t know how to treat? Their experience is that if you were PSMA positive to begin with, any recurrence is likely to be PSMA positive as well. To me this suggests that you could do intermittent RLT and just do the treatment as needed to tamp things down.
There is lot of intermittent RLT discusion in Europe. People who do it get 1 ( or max 2) IV shots, wait until they measure certain PSA level ( and PET/CT confirmed burden) and than start the next IV. Some of them achive 18-24 months desease control with no or very low AEs. Also, low dose chemo started 2-3 months after RLT shot is discussed but I didn‘t see any reports on outcome. Has someone here followed this approach or discussed it with his MO.
Good to know. As far as I know, all my tumors are intensely Psma avid, and that is why I had such good uptake. I asked dr Drake on Tuesday about the monster that may remain behind, and he reassured me he has many immunotherapies in store for me when the need arises.
You got that right. After all that travel and money rib eye steak under candlelight sounds about right. Or shrimp and lobster if you're into creepy things that live in the ocean.
Great stuff....Question, Is there resistance from your treating facility in the USA from sending your records? Or do they just want them on the application ? Just thinking out loud....I still have some time on this one ...Still flying!! Blue Skies,, Sky King and Penny (woof)
I had my records. I scanned them and uploaded them into the online application. Dr Drake had no problem with me being treated in Germany. He recommended it. But he did not need to send records, or surprisingly, even a referral.
I can understanding not having a referral but that is good news....If it comes to going I will just sent a HIPA release and let them send them. Thanks for the info....
That won’t work. They want all requested records uploaded into their online application. I’m not that tech savvy, so I had a former 21 yo assistant from my old office help me, and she accomplished it in no time. Go to ukhd.org and look at the application.
You got that. The survival statistics for people trying to get to Europe in airplane wheel wells is worse than advanced prostate cancer. We need to kick them politicians in the nuts and tell them to get into high gear. I can't vote for them, so they can pursue their crooked agendas, if I'm DOA. They already did the tests in Europe. I want my LU177 next Tuesday. And I don't want to drive more than 10 miles to get it. Is that too much to ask?
Dr Drake was all for it. Recommended it and was enthusiastic about it. It was either this or immunotherapy clinical trials. He will see me in 3 months, after my second treatment, continue me on Eligard. PSA every 3 weeks and watch the trend. He knows I want to jump quickly on any PSA increases or imaging progression.
Your comment...."this, or immunotherapy trials" caught my attention as I was going to talk to my MO about the latter next week. It makes me wonder what is best first and why. I am sure there is a good logic behind the sequence and I would like to understand better.
Nobody knows the correct sequence for any of these treatments at this stage. I chose the Lu/Ac because it has a several year track record here in Germany with a 70% response rate. Car-t and regeneron are very up to date and cutting edge, but we really don’t know what the response rate may be. And the side effects with these can be much more serious than with radioisotopes. That is how I came to my decision. Those immunotherapies will still be available to me in the future as long as I express even a little bit of Psma.
Thanks for posting! Salute the castle for us please? It is a magical place. May the treatment help extend your life and squash the pc .. 🙏🏼
Germans are efficient and on time. If you get a chance to tour the castle see the kings dance floor on top of a two story wine keg . It was good to be the king. Peace and good luck in you quest .🙏🏼
Thank you so much for all the great info. I may be heading that way. In the Combat Trial at JH. Not real happy with it do far. You say you looked at leaving from Norfolk. I live in the Nortern neck of Virginia. Thank you for the update
Thank you for a straigt and clear info that you post. This is what i really seeking. And wow the price is very lower than bookinghealth. They estimated me €29,000 for 1 treatment and in different hospital. Oh my..
Your post is so helpful as we are looking into this and have compiled a list of questions. Your post answered almost all of them! Hope you are doing well!
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