Treatment in Germany

[Michelle56pr]

Boyfriend was dx in Fen 2017. Did well on Zitiga, after that chemo x 2, clinical trials, X tandi, radiation...all failed. Now oncologist offered Keytruda and asked him to get his papers in order after explaining a litany of side effects . He is having cold feet, currently he experiences mild pain, but he is doing fairly well considering mets to his bones throughout his body. Doing Panacur x last 2 months and considering going to Germany x treatment. Anyone gone that route? I think they are offering Litetium-177. For some reason his oncologist denied that treatment for him.Thanks for any feedback.

[Tall_Allen]

What country is he in? Keytruda doesn't work well on its own unless he has a rare genomic trait. Is Xofigo available in your country?

[Michelle56pr in reply to Tall_Allen]

Thanks for responding. We live in TX He has CDK12, TP53, TSC2. mutated Cancer. Treated with Leuprolide, Zytiga, Docetaxel, Rucaparib+Lucitanib, Cabazitaxel+Carboplatin and radiation. Failed on each one except x Zitiga. Concern about low success rate of Keytruda in advanced prostate ca.

[Tall_Allen in reply to Michelle56pr]

There are a few clinical trials targeting CDK12:

clinicaltrials.gov/ct2/show...

clinicaltrials.gov/ct2/show...

clinicaltrials.gov/ct2/show...

clinicaltrials.gov/ct2/show...

clinicaltrials.gov/ct2/show...

clinicaltrials.gov/ct2/show...

clinicaltrials.gov/ct2/show...

clinicaltrials.gov/ct2/show...

In the US, there are some radiopharmaceutical trials targeting PSMA, so you may not have to go to Germany for it:

prostatecancer.news/2020/08...

I think you should consider Xofigo as well:

prostatecancer.news/2021/02...

If you know that his cancer heavily expresses PSMA and is not mixed with cancer that doesn't (a PSMA PET scan + an FDG PET scan will tell you), there are PSMA-targeted immunotherapies (called BiTEs) that may work for him:

prostatecancer.news/2019/12...

[Michelle56pr in reply to Tall_Allen]

Thanks so much for your wealth of information. We requested a tx summary from Md Anderson. His oncologist stated that something new might be available in November, but his Ca is very aggressive, he recommended Keytruda again. stating there is nothing else available x him.

[Tall_Allen in reply to Michelle56pr]

Did you share those clinical trials with your oncologist? Why did he discount them?

[Michelle56pr in reply to Tall_Allen]

Yes , he did. According to him, because my bf has been on Zytiga

[Michelle56pr in reply to Michelle56pr]

We saw that they had clinical trials on LU177 and I guess that disqualified him.

[Tall_Allen in reply to Michelle56pr]

Look again. Almost all of those trials for LuPSMA and BiTEs require patients to have tried Zytiga or Xtandi.

He seems to qualify for some of the trials for CDK12.

And he qualifies for Xofigo as long as he reports some pain.

[Hidden]

There are quite a few posts on the forum about people going to Germany and other countries for LU-177 treatment.

You can search the forum and find them. Here are 2 recent posts:

healthunlocked.com/advanced...

healthunlocked.com/advanced...

[Michelle56pr in reply to Hidden]

Thanks for the info, very much appreciated.

[meowlicious99 in reply to Hidden]

There seems to be LU here in India too. Not sure if thats an option if cost is a concern.

[andrew61]

I’m in Munich now for Lu177. If you have specific questions about the process please message me.

[Claud68 in reply to andrew61]

Hello, my husband had 3 Lu177 treatments in 2019 in Austria. It became now very expensive and as he has now new mets and risingPSA, we are looking for a hospital offering Lu177 in Germany. What is the price you paid for one Lu177 treatment in Munich and for the other costs in hospital? Thank you in advance and good luck for your treatment!

[andrew61 in reply to Claud68]

It is EU 13,000 at TUM in Munich.

[Claud68 in reply to andrew61]

Thanks for your response. It is a little bit cheaper than it was in Vienna in 2019. Last week we've got an estimate from a big hospital in Turkey via Bookimed for about 8000 euros including a ga68psma petscan. Is there somebody who has got Lu177 and even a mix of Lu177 and actinium225 in Istanbul or Antalya?

[Michelle56pr in reply to andrew61]

Good morning, thanks . I was wondering if you have to have a scan or other testing in US to determine if you are a good candidate x the tx.?

[andrew61 in reply to Michelle56pr]

You need to send them a PSMA scan. I sent a Pylarify scan.

[Michelle56pr in reply to andrew61]

Thanks. I was checking into that yesterday. I believe there is a site in Houston.

[andrew61 in reply to Michelle56pr]

I went to Fort Lauderdale. PET imaging institute of south Florida. Surprisingly my blue cross insurance approved the PSMA scan although I don’t yet know how much they will refund.

[Michelle56pr in reply to andrew61]

Thanks for your reply. Not sure if he can even travel now. Experiencing pain, not relieved by Vicodin or Morphine, nausea and vomiting, maybe related to opiates and trouble walking. Oncologist notified, but he is hesitating about getting Keytruda. Success rate with prostate Ca is low and on top of that he has CDK mutation, which is very aggressive. I don't think he understands the urgency to seek care immediately. Thanks to all of you for your support.

[NotAlwaysSunshine]

My husband participated in a clinical trial with Keytruda and tablostadt. The trial wiped out his salvia glands. Horrible side effect. He does have a genetic mutation RAD51c. He's currently on Xofigo.

[Michelle56pr]

Thanks for your response. I have not read about good responses for these mutations. Did your husband respond to Keytruda?At this point there is not an easy answer for his situation. I give him as much information and feedback from patients who have received the treatment as I can, but at the end of the day , he needs to decide on his own. I am more concerned about making sure that his intractable pain , nausea/ vomiting and poor mobility is treated before he goes on another trial or aggressive treatment.