Seeking info on what types of treatments are offered in Germany (PSMA Lu177, Immunotherapy etc) if anyone here has gotten such treatment ? What locations besides U of Heidelberg? Any idea about approx cost and duration.
I’m finding that the oncologists I’m consulting with are quite fixated on ADT and if you decline that they are not willing to offer other treatments at all.
Hello,
I went to the Universitaets Klinikum des Saarlandes (UKS) in Homburg, Germany. The cost was 6900 Euros for the first treatment which included a PSMA Gallium PET scan. The normal process is you arrive early in the week (Monday or Tuesday), have the PET scan and several blood tests. This is followed by a consultation with one of the UKS doctors. The following morning (Wednesday) there is a second medical consultation where they go over the results of your PET scan and blood tests. You receive the Lutetium infusion on Wednesday afternoon and then admitted to the hospital. You stay in the hospital for two nights and are normally discharged on Friday morning, after another scan and consultation.
I chose UKS because a friend went there, because it was cheaper than other German clinics and because the doctors there are not afraid to pull the trigger on mixing Actinium and Lutetium in a cocktail if required. Homburg is a small town with a big hospital in the Saar region of Germany. Fly to Frankfurt, take the ICE train to Mannheim and transfer on the RE train to Homburg. The Hotel Stadt des Homburg is very convenient (although not four star). You can walk from the hotel to the hospital about 800 meters (although it is uphill). There is also a bus which makes the loop around the hospital complex. The best part of the Stadt Hotel is their all you can eat breakfast buffet at 4.9 Euros! Hope that helps!
Hi
Thanks for providing the useful info. I have a few follow up questions:
1- what is the supposed advantage of mixing Actinium and Tc ?
2- Each case is different but aren’t you suppose to get more than 1 treatment?
3- Do you know or the Drs there shared with you what is the percentage of people achieving remission with Tc. Did you benefit and in what way?
4- Another member raised the concern that no one in Germany will give Tc treatment if I have not had ADT. Do you concur?
5- Did they have any other treatments for PCa like immunotherapy ?
Best wishes
Hello,
To reply to your questions. 1). The doctors at UKS will only mix Actinium with Lutetium if the Lutetium treatment on its own is not effective. They put it in a cocktail because Actinium on its own can be very damaging to your salivary glands which also express PSMA. 2). Yes normally they will schedule 4 to 6 treatments four to six weeks apart. 3). Good question. For a variety of reasons I did not receive the Lutetium treatment, probably because my PSA level after steadily going up for six months dropped significantly just before we were to leave for Germany. By that time it was too late to cancel. I did, however, have the PSMA PET scan. We agreed that I would return when my PSA started going back up again. 4)That member is correct. The doctors at UKS want you to be on Xtandi (enzalutamide) before treatment. If you are not on enzalutamide they will put you on it and you will pay for the cost of the pills. 5). Not sure. The sign on the Klinik says Nuklear Medizin and I think that is what they specialize in. The two doctors in charge are Dr. Samer Ezziddin and Dr. Fadi Khreish. If you are interested in their Lu 177 program write an e-mail to "PSMA@uks.eu". Hope that helps!
Yes that helps tremendously .
Hope you have an excellent outcome from your upcoming treatment.
Best wishes
Wondering how long they put you on Xtandi, how long before, do you have to reschedule, how long total, what is the cost? Would a US insurance reimburse any, cover any?
Thanks
Hello,
To answer your questions. 1). I am pretty sure they want you on Xtandi (enzalutamide) for the duration of the treatment. I personally have been on Xtandi for over two years. 2). They will schedule your next treatment (appointment) on the Friday before you fly home. Depending on how aggressive your cancer is four to six weeks. 3). Four to six treatments four to six weeks apart. 4). The first treatment was 6900 Euros. I suspect subsequent treatments would cost a little less. 5). I haven't got a clue. I am a resident of Canada. I know our provincial medical plan does not cover treatments in a foreign country unless there are exceptional circumstances. Hope that helps! Good Luck!
The reason U.S. trained Oncologists insist on ADT first because that's how they were trained. It just so happens ADT also is the the most effective treatment, it delivers the best results with moderate costs and well known and manageable side-effects..How will Lu-177 work if you are ADT naive ? Who knows ? You become a one man clinical trial. Will you live longer than someone who is also on ADT? Again, who knows..?
This is indeed thought provoking. It may boil down to quality vs quantity. What is the duration of time you think it adds to the Pts life?
My husband is ADT naive, having refused all the traditional treatments. He had Provenge immunotherapy in the summer of 2018 which kept him in great shape for one year. Then the _____hit the fan and we went to Homburg Germany where he received his first Lutetium treatment in late august. He felt GREAT until two days ago and now he's in trouble again I'm afraid. Luckily he will return October 21 for a second of four expected treatments.
Although ADT has been the most successful therapy for thirty years that seems a good reason to question it to me. In thirty years nothing better has appeared? I'm not sure most of our oncologists are really interested in thinking outside the box. As in everything, one's mental attitude plays a significant portion of health.
There seems to be some differing opinions regarding Xtandi and lutetium. My hub took it before and after the first treatment but now he may not be doing that.
I doubt that you can get Lu-177-PSMA-617 without ADT anywhere in the world. The reason they are "fixated" on ADT is because it is the single most effective medicine for prostate cancer. All other medicines have only been tested as added to it. It would be unethical not to give it outside of a clinical trial.
I’m the 4th person in my family to get PCa. All BRCA positive. I witnessed the other 3 get ADT which did not extend their life. My brother actually died from sudden cardiac death known to happen with ADT within 10 months of starting ADT. With that kind of family history I’m forced to think there may be something that keeps us from gaining the longevity benefits others get from ADT. Not certain though.
It's impossible to know for any one person what would have happened if they did not receive a therapy. If you have known cardiac issues, Firmagon may be a better choice than Lupron.
Thanks. I’ll look into firmagon.
Thanks for the additional information.
Did you benefit from treatment there or is it too soon to tell.
Ironically, ADT seems to increase PSMA expression in the short term, but decrease it in the long term.
ADT, given with any kind of radiation (1) sensitizes cancer cells to killing by radiation and (2) decreases the number of cancer cells to be killed. So, just as external beam radiation is a lot more effective in high-risk men when given with adjuvant ADT, it is reasonable to assume the X-rays from Lu-177 behave similarly.
Hi Tall_Allen.
Do we have more of a concrete definition of what is short vs long term in regards to ADT and it's interaction with PSMA expression?
Thanks
In one study I read, they detected the enhancing effect 1-2 weeks after Firmagon was started in 5 patients. In another case report, the effect was noted after 3 months into Xtandi. There is a small clinical trial in Finland.
Hi,
my husband with Gleason 9 (4+5) refused any ADT after the prostatectomy and was very blessed to get quickly three treatments of Lu177 in Vienna, Austria. He had 6 mets in lymphnods and a fast rising PSA after the prostatectomy in November 30th 2018.
The third infusion of Lu177 was on the first August 2019. And his PSA is still dropping and was 0.56 last week. An average dropping of 0.01 a day and we hope that it will continue to drop.
Apart one night of nausea after each treatment he had no problems, no pain or fatigue or dry mouth at all.
I'm so sorry for my bad english but I wanted to share with all of you our experience and give you some hope too.
That is very encouraging. Hope he goes in permanent remission. Can you share bit more details like which hospital , doctor and total cost.
Your English is perfect. I couldn’t tell it’s your second language.
Best regards
I am sorry but a Lu177 treatment will not result in a permanent remission. If you are very successful and have only a limited number of mets, you can remove the mets you see on the PSMA PET/CT, but there are usually smaller ones which grow to a visible size in about a year. Adding ADT to the treatment will extend this period.
Here is an example of a patient who is ADT resistant, had Chemotherapies and decided to get Lu177 at a PSA of 5769 ng/ml. His PSA dropped by 50% to 2422 ng/ml, but the final PSMA PET/CT reveals that the tumor has stabilized and some mets became smaller, but the tumor is still there. On conferences they show images where all the mets are gone, but the rule is a result like this, in the case that all other treatments have failed already: up.picr.de/36969540yi.png
If cure is impossible we can hope for long remission without serious adverse effects of treatment.
Thanks for all the info and slides.
I opted for HIFU treatment here in the states but had to go out of state to get it. There's at least one person on this site who has described getting this treatment in Germany and related that it is much cheaper there.
Hi Silverligh,
After the prostatectomy in Nice (France) in November 30th 2018 my husband's PSA was again rising fast, but he decided to refuse any ADT and we went to Austria to see Prof. Sharok Shariat, one of the most famous cancer-specialists. He sent us to see Prof Hartenbach. A Ga 68-PSMA petscan in January 2019 in Vienna/Austria, detected several mets in lymphnods. So we decided to make the Lu177 -PSMA treatment in Vienna instead hormontherapy. It was very expensive because the health insurances don't refund anything.
Now my husband has got three treatments in Vienna. The last was on 1st of August. His PSA has dropped to 0.56 after the third injection and should continue to drop as it does since March 2019. He had no side effects at all, even not dry mouth. Only a little nausea the nights after the treatments. But my husband had no bone mets, only 6 mets in lymphnods.
The professor Markus Hartenbach in Vienna is one of the only doctors to make the therapy with Lu177-PSMA even if you’re not castration resistant. You can leave the office just after the infusion which lasts about one hour. Before, you have a Ga168 pet scan (2,250 €) and prof. Hartenbach will see if it is possible to do the therapy. Each treatment costed 14.000 €. He speaks English very well.
His email: office@minute-medical.com and the website:
minute-medical.com
You are welcome if I can help you with other information as we are all in the same terrible situation to fight this terrible cancer.
What Lu-177 offers most patients who are reactive on a PSMA Pet scan and are mCRPC is time. My brother has had 4 injections with about 15 months between the second and third injections. After the 4th his PSA is around 4. The next two or three years will present new treatments that will further keep the PCa at bay. Australia, where I live, is at the forefront of PSMA Ligand therapy. Hundreds of men have paid for their therapy. Very few, if any, achieve long term remission, but it does give them time (and improved QoL). I discuss all this in my new book An ABC of Prostate Cancer Today - 3rd Edition due out on Amazon by mid-November.
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