My hubby is out of FDA approved options and I haven’t been able to find a study here in the US that he qualifies for. I’ve read on here about some of you receiving treatment in Germany where this drug is already approved. It seems like the most hopeful option with the highest chance of some positive result. We are blessed enough to be able to afford this potential option but as the “sexatary” lol, I’m feeling really overwhelmed with figuring it all out in a timely fashion. I would love to hear from anyone who has been there. Any insight you could give would be sooooo appreciated!!!
I had Lu 177 PSMA treatment in 2016 at the Technical University of Munich. It is a good place and I recommend it.
Can you recommend a doctor? Also, did you go there and stay? Or could you go back home in between treatments? We are in Florida USA, it’s a long haul and we don’t speak the language. Did you have an issue with either of those? Is the treatment well tolerated? Would he be able to travel in Europe right after? (May as well if we can while there). Did they help you plan at all? Sorry, I’m just overflowing with questions!
i went to Munich and i stayed for the treatment. I was admitted Friday morning and I was release Monday morning (3 nights) in the hospital. I flew back home the following Wednesday. The plan was to go back for the second treatment in 6 weeks. I never had the second treatment because the lymph node metastases were gone after the first treatment.
The treatment is very well tolerated. I did not have practically any negaive effect. I had fatigue lasting less than 12 hours and some edema that resolved with one Lasix pill.
You can travel anywhere after the treatment. They will give you a letter explaining the isotope and amount of radioactivity used in the treatment, in case any alarm goes off at the airport. I arranged the whole treatment by email. They have an office for foreign patients:
I`am new here, from Finland and my English is not very good, sorry. I would like to inform you that "Lu" treatment you can get in a private oncology hospital "Docrates" Helsinki (this is an expensive hospital). The second hospital "Helsinki University Hospital" provides also Lutetium treatment.
This hospital is now starting BNCT (Boron Neutron Capture Therapy) treatment with a new equipment from Neuron Therapeutics USA. This therapy is currently being treated for head and neck cancers, later, other cancers will be treated.
My story:
I am now 77 years old.
2002 LDR Brachytherapy, (psa 8, Gleason 3+3)
2006 recurrence, psa 1.8 and salvage radiation therapy 45 Gy + Bicalutamide 1 x 150mg for two years.
2006-2017 level of psa 0,6 no treatments
2017 recurrence, the level of psa is growing from 0,6 to 2,1 now.
MRI and PSMA-gal 68 clean without a sign of cancer, clean urine without bacteria. My doctor proposes to wait until the level of psa rises to about 5 and then start hormone therapy. For me hormone therapy is not good,
I would like to try e.g Bicalutamide 50mgx1+Metformin (google=dr Bilusic) or Bica + another drug like Vermox (Mebendazole) or Fenbendazole or LDN (Naltrexone).........
Hi, he has been through Lupron, Zytiga, Xtandi. We are very fortunate in that he has a very low incidence of disease so far (only 2 spine mets which were both treated with radiation a year apart). PSA is doubling monthly though and up to 50 from undetectable earlier in the year. He’s very healthy. Both he and his MO want to save chemo as a final option. If he’s to do a trial we would rather he do it now while he’s still healthy. He doesn’t qualify for the Vision trial because he’s chemo naive and doesn’t qualify for the other LU177 trial because both Mets were radiated so nothing to measure.
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I thought I had found him a trial at MD Anderson but then they dropped the trial! It’s like a full time job to research this stuff. I should be a PhD by now. I just keep running into roadblocks and feel like I am running out of time and options
I absolutely agree that it is not. Initially when I first started researching, I thought that chemo was such an amazing thing for prostate cancer. After researching extensively, i find that docetaxel does improve progression free survival and symptoms, but there are trade offs and it does not work for everyone.
Please let me know how the Lu-177 goes for you. I know its not much, but I am so sorry that you have to go through this right now. I wish you the best.
Thank you very much, BarronS. I much appreciate your kindness and concern.
I have just begun the treatment (Lu-177) and the early signs are not positive, unfortunately. My PSA has risen from 16.02 to 26.80 and the PSMA PET CT scan that I did indicated an increase in mets, both in size and qty. All this in 45 days after the first infusion of Lu-177 on the 23rd of April, 2019.
As of now, I will be getting the second infusion on the 25th of June. I have also re-started on Abiraterone along with Prednisone. Lets see what happens.
Thanks very much, BarronS. All the very best to you too.
How old is he ? What was his Gleason score ? You still need to have a positive 68Ga-PSMA-11 PET/CT scan to be sure the Lu-177 will work. You could have that done in the U.S. before you committed to traveling for treatment.. You could meet the requirement for the "Vision" trial by having a quick treatment with Jevtana (Cabozitazel) to meet the trial's requirements..But even then, you still must get through the 2/3 - 1/3 selection process..So if you have the money and are PSMA positive, head for Germany..
Hi, thanks! Yes, I totally agree thats why we're considering germany but now I'm wondering how/where to get the scan in the US. Our MO told us we can only get it if we are on a trial?!!!!
My husband had his PSMA pet scan at Excel Diagnostics in Houston which, I believe, participated in the Vision trial but also will do the scan for people outside the trial who intend to travel to Germany. Their fee is quite pricey—$5000 which I think is twice the amount most other Vision locations charge based on what I’ve read in the posts. A gouge but expedient.
Hi..if you go to my posts on here you will find a bullet point entry of how I organised my first treatment session at Heidelberg in March....may assist.
I am due to update in a few weeks by which time I should have had treatment 2.
The Peter Macallum Institute in Melbourne is right at the leading edge with Lu177 and I believe they have just commenced several trials - I don’t know how US patients would go about applying, but it’s probably worth giving them a call. Prof. Hoffman is the key clinician in this area.
LU177 is now available in the UK, you could try The London Clinic, if you Google it you should find it. I am hoping to get on the Vision trial but if don't then I will be looking at the London Cliniv.
Hi. I don’t think anyone has been successful at getting it at the London clinic. But there is a place called Genesis in windsor which is something to do with Theranostics from Australia.
They said that to someone else on here too. And they came over from Ireland and had scans. Then they were told it wasn’t available in the UK outside of the vision trial. But please keep me informed as I would like it for my dad in London.
Lutetium doesn't work for everyone. Firstly you need to a a good response to PSMA scan. The not all have a good response. I was on the Lutetium trial after Xtandi ran its race. Started last Dec. but after 3 infusions PSA continued to rise. (From about 100 in Dec to 1900 in April. Now after 2 infusions cabazetaxal Chemo psa has dropped 10%. Not much but I am feeling great and living an active life at 73 yrs.
Have had a third dose of chemo and have none of the nasty side effects that I had with Doxetal Chemo
Try Booking for Health. It sounds like your husband is in the same predicament that I am in. I completed their questionnaire and submitted it and within 20 min I had a call from them. They recommended university of Saarland in Homburg because they were the cheapest(15500 euros). This included to and from taxi service from Frankfurt(about 1 1/2 hr drive), room and board. I am presently here and will get Lu-177 today. I came by myself because you can no longer stay in hospital with your husband. I can speak some German and most here are bi-lingual. The program is arrive Monday, PSMA68 scan Tuesday, salivary gland test and Lu-177 Wed, Thurs is another Pet scan to see if lutetium went to cancer and Friday is back to USA. I hope this helps
Not sure how it all adds up because Heidelberg didn’t do the PSMA PET beforehand and didn’t offer the “extras” like room and board and transportation (which really don’t add up to much), but their fee for the Lu-177/AC-225 combo treatment was 9800 euros.
So how are you doing? Thanks so much for your reply. I contacted Booking Health and it looks like we are off to Germany too! Any side effects? You're so brave to have gone on your own. My guy won't go without me. I'm fine with going, in fact we are going to enjoy some time in Italy while we are over there, either before or after the treatment. I'm praying that you have a good result.
So far my pain is only in the area where the cancer is. Otherwise seem ok. After your first trip you will be able to deal directly with the hospital and figure out public transportation. You will save money. Which facility are you going to?
When I was out of all options here in the US I tried the APCEDEN true autologous vaccines( NOT to be confused with Provenge) in Delhi, India. Went from 30 tumors to just the primary in 2 months including bone mets in sacrum, spine, and cheekbone, and so many tumors around my heart it was covered on the PSMA PET scan. Unfortunately I don't appear to have created a memory like hoped so I will have a prostatectomy soon and have more vaccines made to try to kill any floaters. I am also on Keytruda and Xtandi now but was ONLY on the vaccines when the tumors melted. Both my oncos now consider me non-metastatic so they will now do surgery. I have been considered non-metastatic for 2 years this September. I was dx' in August, 2014 with PSA of 212, and Gleason 9 with widespread lymph node mets up to my neck. APACBiotech.com is where you can learn about what I did. They are great. At least it's another tool to consider if needed. There are no side effects which is great as I suffered terribly from Lupron. They are also in collaboration with Dr. William K. Decker from Baylor in Houston so they are the real deal. He is a very well respected immunologist. I feel very fortunate that I was able to travel outside the US for treatment. Sloan Kettering, Cleveland, and Rutgers all told me they had nothing else for me to try.
I was led to believe that once mets had gone to the bones, that was it and nothing wouldcure them Our OC and info from NHS and Cancer Research have all said this. Iam very intrigued by the immunotherapy that you have had in India. My husband has 3 hot spots on spine and pelvis, it would be fantastic if they could be eradicated as you have suggested.
I have already gone to the web site, may I ask how much did it cost you for the course,?
It looks very interesting, How come nobody else has ever mentioned this treatment, is it new?
It says that each injection is 15days apart, what is the whole amount of time that you had to stay in Delhi for? about 3 Months?
You need to be in Delhi a couple of weeks is all. You can travel to the Taj Mahal etc while on your off days if you r up for it. They need to do the prostate biopsy there which was $600.00US. PSMA PET full body with and w/o contrast $550.00. If going through Medanta Medicity with Dr. Ashok Vaid, head of oncology at Medanta 12 vaccines are around $24,000.00. You only need to buy 6 however if you want to just see if they help you or not, and then buy more later but go through the biopsy again
The lab is $10,000.00 for 6 vaccines. They can give you a free to travel presrciption to bring back the vaccines on dry ice, but they need to be placed in liquid nitrogen upon returning. I bought the correct container for around $300.00 from US Solid and just fill it every 3 weeks at a local welding supply place. They give you the first dose there and then I give mine to myself sub q which is easy. They go by the lymph nodes closest to the prostate. Don't believe everything you hear. We in the US only receive what is legal. It's not always the doctors fault. Their hands are tied. APAC used FDA RESIST guidelines so people would be more confident in their treatment. The treatment is very similar to what I received 23 years ago upon having my kidney cancer(5.1 pound tumor) removed with a marble sized pelvic bone met. It resolved and I never looked back. When it works, it works. There are trials now that are similar IF you can get into them, but you may receive the placebo arm. I wanted the real thing. I do know that one man is still OK after about 6-7 years, another had it start to come back at 5 years that was in the trial and bought more vaccines to reignite his immune system. I saw the scans and they were way worse off than me in respect to bone mets anyway. I may have had them beat in lymph nodes but either way everyone was really sick that was involved in the trial as is normal and I was too. I do also know there is one woman that is still in remission from metastatic ovarian cancer after 7 years that was in the trial and another with ovarian that was still around after 5 years or so, but not in total remission. The vaccines are very similar to what UPenn did with 25 ovarian cancer patients. They have 2 in complete remission with several more in a controlled state. You can Google it. TVAX which cured me of the kidney cancer was closed to humans but is available to horses, cats, and dogs now. This is why I looked for something like that and I found it in India. Good thing is there's more coming since they are in collaboration with Baylor and Diakanos Immunotherapy from Houston. If you have the money theirs is even more advanced than what I did, but it is very early as only a few patients have received it thus far but in theory it should work even better. You can Google it, but the National Cancer Institute of India is sponsoring a brain cancer trial using the licensed treatment from the US to 120 patients in Delhi, with half receiving the real thing and half receiving the placebo. Baylor has put some dogs and mice into remission from metastatic pancreatic cancer using their patented double loaded autologous dendritic cell vaccines but getting a human trial stateside takes more time than alot of us, including me have or had to wait. Double loaded means your tumor lysate and your mRNA combined in the same vaccine. Trials here have only used one or the other. Dr. William K. Decker is the immunologist at Baylor and his team are responsible for the double loaded but you need to go through them here in the US, but have fly to India to have it administered. Crazy, but he can't do it here yet. I was the first person they tried the double loaded on for a side effect profile For me it did not create a strong enough memory to cure me, but defintely kept me stable and feeling good. I am still a little surprised I just keep getting better as long as I am on treatment. Side effects are neglible which is a bonus. I also looked at the vaccines in Germany using the Newcastle virus but it was $200,000.00US which i didn't have and in Bejing for similar to India prices but I chose India since almost all of the doctors sprak English making it easier for me to communicate. If I have anything come back at all in the bone after I stop treatment I plan on LU177 unless something better is found by then. Right now I feel the best I have felt in years and will make 5 years in 2 months. Not bad for where I came from but it has been one hell of a road to say the least.
Thankyou so much for your detailed response, I hope everything keeps working for you. We go on holiday to India every year(we live in UK) so a good option for us when the time comes.
There is a NCT trial in Sarasota, Florida using Keytruda. Since it is close to your location you may want to investigate requirements. I heard the participants are having great results. I looked at it for my husband who sounds to be in a similar situation as your husband and I don't remember why but mine did not qualify for some reason.
HI Mary, Sam did not qualify for Keytruda, when they took a biopsy of his lymph node last year, he did not have the mutation... He at that time qualified for this targated therapy drug, pill form... The side effects were brutal.. Sam is going for the Lu-277 trial.
Thanks so much. I did consider that but it is my understanding that Keytruda is not making much headway in PC. We may end up there at some point but I'd like to start with what has the highest possible chance of success right now. God Bless you and your man
We just heard from my husband’s GP yesterday that another of his patients who is stage 4 prostate cancer is having excellent results with the Keytruda study at Duke. That’s why I looked into the trial.
Oh geez, well thats great news! This is all so confusing and not user friendly! I honestly don't know which way to turn. I'm going to take a closer look at it for sure. Thank God for this forum and a couple of others. Its really the best place to get help and any meaningful, understandable input LOL!
I just want to say that I love all you people! Brilliant, caring and willing to give of your time. You have no idea what blessing you are. Thank you XOXO
thanks, but I have already researched the clinical trials that might work for us. i narrowed it down from 320 worldwide to 6 here in the US. He either doesn't qualify or its not a drug thats achieving much success with prostate cancer. Then you factor in jumping through all of hoops, being accepted into the trial and then having only a 60% chance of even getting the drug. We are fortunate enough to be able to do a trial anywhere. There isn't anything near home. I started there of course. In Germany we can just go and pay for the treatment. We don't have to do a trial. Thats why we are leaning that direction. I really just wanted some insight into that route specifically although I appreciate all of the input, you never know! Thanks!
This thread has a wealth of info. Thanks for the post and keep us posted how things go. Have you found results showing success rates/outcomes for the lu 177 and the other one that tall Allen mentioned? What about the one in dehli that someone else mentioned? What was your husband's initial treatment, prostatectamy or radiation? What was his initial doubling rate after treatment? What was his pre treatment Gleason?
Just a word of caution with Lu-177 ligand therapy. My brother has now had 4 injections over about 20 months. First two reduced his PCa burden to nearly nil. Also almost zero PSA. Sixteen months later PSA and mets returned. Now back to low PSA and one or two mets only. Treatment was via Theranostics Australia in Sydney. About US$7K per injection.
What this treatment does is buy the patient two to 4 years of reasonable quality life. Main challenge was long term damage to saliva glands. They are try ac- 225 , and others are trying Terbium as the radioactive molecule which might turn out more effective down the track.-
It is essential that PSMA Pet scan be done BEFORE committing to therapy, as 10-15% of men find their PSMA receptors are absent or under-active and won't take up the Lu-177.
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Back to plan B - No longer chasing Lu177
Xofigo first then Lu177??
New Lu177 trials in Australia
update on Heidelberg
Worried Daughter 
