Lutetium 177/Actinium 255 treatment in Germany

[ellyras]

Hello, We live in the UK and my husband has pretty much exhausted all the standard treatment for advanced prostate cancer so we are hoping for advice on these treatments as well as contact details for Dr Scott Tagwea and Dr Uwe Haberkron. Neither are available in the UK right now so Germany is our best option. Any help much appreciated. Thank you.

[HB1966]

Hi,

here is a link to contact details for dr Haberkorn:

klinikum.uni-heidelberg.de/...

[Tall_Allen]

Click on the relevant links in the article below:

pcnrv.blogspot.com/2016/12/...

[GP24]

Here are links to clinics offering Lu177 treatment in Germany:

healthunlocked.com/advanced...

[CarlinPhoenix]

Dear ellyras,

I read with interest your post regarding the next steps you are faced with and have a question for you. I too am in a similar situation where I have only Radium 223 or Cabazataxil left for standard of care in the USA. Additionally there are Medical Trials which offer Lu177 PSMA 617 (VISION) that is randomized 2/1.

I have been to see Dr Scott Tagawa and came away a bit disillusioned. From all I have read about the Trials offered at Cornell it seemed like there would be one or two that I could qualify for. However, after hearing the situation as Dr Tagawa explained there is nothing available for me at this time.

I'm wondering how you are doing in your journey? What direction have you gone and how are things working out for you?

I would be happy to share more details of my meeting with Dr Tagawa if you are interested in more specifics.

Thank you for your input and best of luck to you.

Carl

[ellyras in reply to CarlinPhoenix]

Tomorrow is the start of the phase 1 trial . A phase 1 trial means the drug has not been used on humans before so essentially you are a guinea pig and while it might not help , it could help future patients. But if this doesn't help its the end of the road with only palliative care left. I heave heard only good things about Scott Tagawa -why isn't he offering you the Vision trial? If your cancer is in the bones Radium 223 is really effective but if you have that you cant have Lutetium for 6 months afterwards (or vice versa). The "good" news for you is that you still have 2 standard of care options left, but if you can get on the Vision trial I'd recommend that over the radium 223. Would be interested to hear more details. Meantime thanks for your good wishes and same back to you.

[CarlinPhoenix]

Thanks for your response. And good luck with your new trial. Which trial are you starting? There are several reasons why I do not qualify for the Vision trial. My blood work is not in sync, platelets are too low and I have Superscan bone mets which means there is too many bone mets to be accepted.

Have you had Lu177 or Ac225 or RA223 yet?

If so, I'm wondering how effective these were for you.

Right now it looks like the only way for me to get Lu 177 or Ac225 is to go to Germany and pay for the treatments there. Dr Tagawa's Ac225-J591 study is not recruiting at the moment. He thinks it should start again in August. My PSA is 771 and rising. Tomorrow I meet with my MO and will most likely have to decide what direction to go. I think he is going to push for Cabazataxil.

At the moment I have mostly bone mets and four small lymph node enlargements which are most likely cancer. So I'm confused as to why he is not recommending RA223 first.

[ellyras in reply to CarlinPhoenix]

I've had LU177 and they took me off it because i have 2 small lesions in the liver and Lu177 doesn't hit the liver apparently. If your platelets are too low I don't think they will recommend it for you in Germany either. Lu 177 is only effective in 1/3 of patients apparently. It's not the wonder drug its been hyped up to be. I cant understand why they wouldn't push for Radium 223 which I understand is most effective for bone mets. My trial is just called the cell centric trial-the drug is CCS 1477. You can look it up on the cell centric website but there's not much information as its so new. Please let me know what they decide.

[Cheerr in reply to CarlinPhoenix]

Hi CarlinPhoenix,

I hope you get the opportunity to get on a suitable trial soon.

What’s your platelets count as of now?

Wanted to know since that is one of the determining factors to be qualified for Lu 177.

[CarlinPhoenix in reply to Cheerr]

My platelet count is 105. I believe the requirement is 150 or greater to qualify for Lu 177. In the recent past my platelets have been over 350 but since then I've had Docetaxel and a medical trial which had ipilimaub and nipalamaub. I have slaughtered the spelling of those drugs! But you may know of them.

[CarlinPhoenix]

Thank you for your input and wishes. I'm sending positive energy to you in hopes of success with the new trial drug you're starting. It's all so frustrating and confusing. Sometimes it seems like the more you know the higher the frustration level gets. Bottom line there is no cure or miracle drug out there yet. We all just hope that we will be one of the exceptions that gets the key that fits our particular lock. Good luck to you in finding success and always keep up hope. Carl

[ellyras in reply to CarlinPhoenix]

Thank you for this. Without hope there's nothing left. And good luck to you.