We are looking for references for LU 177 treatment. My husband just had two lesions radiated that attached to his bones. These lesions came on quick when Lupron wore off. There are also tiny areas in his lower pelvis concerning for cancer. These worry me. My research shows get the LU 177 treatment now instead of waiting. We aren't waiting for a trial in the US and for him to be hormone resistant. Have bags will travel. I'd appreciate any thoughts or experiences you may have.
I have been in contact with Dr. Ezziddin at Saarland University Hospital in Homburg, Germany. He is very responsive. I'm waiting for our doctor at Mayo to nudge us to go and I told them today there are 3 flights from our home in DC and we can be on any of them. He was the one that told me this treatment was soaking up cancer like a sponge two years ago when we met him.
My husband was diagnosed in May, 2017 with PC. He had a PSA of about 13. It rose so fast in a matter of two months. His RP took place at Hopkins. Gleason 4+3. 7 lymph nodes were negative for cancer. However, his PSA went nuts again soon after RP. Hopkins misread his CAT Scan and missed a 1.2 cm positive lymph node. He traveled to Mayo in MN and their Choline PET saw the lymph node and it was removed. No other lymph nodes tested positive. Then the cancer started growing again so my honey did radiation. He was put on Lupron for 1 year. Immediately after Lupron was out of his system, he grew a hot and huge lesion on spine T6. Two areas were radiated last week. I'm especially worried about a line on his C-11 PET Scan results that stated he had tiny areas of interest in the lower pelvis that are being watched. I feel it's those spots that we must prepare to murder immediately and then maybe we can stop watching over our shoulders.
Thank you so much for any information.
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paige20180
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Before going to Germany he should have a PSMA PET/CT (Ga68 or DCFPyl), it will show if the cancer is PSMA positive. These scan have the best detection rates of all the PET/CT scans available for PC. They will not treat if the patients does not have PSMA lesions in a PSMA PET/CT.
I was treated with Lu 177 PSMA at the Technical University of Munich in 2016. It is a good place. Good equipment, doctors with experience in these treatments. I had multiple lymph node metastases. One Lu 177 PSMA and all the metastases become PSMA negative.
I did not have significant negative effects. I experienced intense fatigue for about 24 hours after the Lu 177 infusion and some edema which resolved with one pill of Lasix. All the doctors and some nurses speak good English, there were not problems with communication. I arranged everything directly with the doctors and the TUM.
Excellent info. Thank you!!! Considering we fly for free being in the airline business and the scan is $1500 Euros versus $16,000 for the choline 11 scan ( haven’t lost a Blue Cross appeal yet but it’s coming) would you just fly to Germany and get the psma there where they can treat immediately? Thanks!!
The Ga 68 PSMA in Munich at the TUM cost around 3000 euros about the same amount that UCLA charges. If you go to Germany they need about 10 days after the Ga 68 PSMA PET/CT to plan the therapy and order the Lu 177 PSMA. I would get the Ga 68 PSMA done before going to Germany.
I arranged everything by email. The doctor I arranged the treatment is not longer working at the TUM. You could contact the international office and get the emails or phone numbers of the doctors doing the treatments.
I am surprised at the different prices charged for the Ga-68-PSMA. I had it performed in Melbourne, AU (Peter MacCallum Cancer Centre) for $600 US. Since you fly free, you might consider going down to Australia if you've never been there. Treatments there may also be less expensive. Even with having to pay for airfare I still saved money and scratched AU off of my bucket list. Check out this link for the Lutetium-177-PSMA-617 treatment.
That’s incredible at $600. We have been fortunate to have been to Aust. Not opposed to going there but the 8 hr multiple direct flights to Germany from our home are better.
I was quoted $6800 Euros for the full LU 177 treatment at Univ of Saarland, Homburg, Germany.
At this point looking for the best experiences and results to determine where to go.
I would support Ronron’s suggestion that you consider Australia for treatment, especially the Peter Mac cancer centre in Melbourne.
Professor Michael Hoffman is one of the pioneers of Lutetium treatment and has published articles on trials he has conducted. I think he has presentations on YouTube.
I am not ready for Lu treatment yet but have had a PSMA scan done here in Canberra (the Nations Capital - bet you thought it was Sydney!) and that also cost $600 - that was a year ago.
Thanks so much for the tip. I can go to Europe for a day or two (normal to us as airline pilots) so I can manage my son, but Australia and my favorite NZ are exhausting time changes and too hard to get to from the eastern US. By the time I got to LAX to connect, I’d be coasting in over the UK. Good to know though!
Very understandable. Oz is a long way from most places. We have now decided that European trips are off the list (unless we save hard so that we can turn left when we board the plane!)
I know someone from Germany who was by Dr Ezziddin. Had 2017 high PSA ( about 400) and did 2 sessions, one 117Lu and one combo 225Ac/177Lu. PSA went to 10 and he started hormon therapy. Still PSA below 0,1. He was very satisfied with provided service
I tried contacting South Africa. After being asked to send my blood tests and PSMA PET-CT scans (which I did), I recd a reply after 10 days saying that I would be accepted for treatment between the 23-25 of September. I had to choose one of the three days. So far, so good. But, they said nothing of treatment cost, side effects, etc, etc. I asked them immediately, but have yet to hear from them thus far. Almost 15 days have passed and I have decided NOT to go to South Africa for treatment, EVEN IF THEY OFFER IT FREE OF COST. Pathetic inefficiency. I too am considering Germany now. But only for the combined therapy of Lu-177 and Ac-225.
That just pisses me off. I know you were looking forward to some safari time. Just pack your bags and go off and murder those lesions, where ever you have to go. Best of wishes whatsinaname.
I was looking forward to the game drives, the food, the natural beauty of South Africa, etc, etc, etc. But, how can one make a decision to do a treatment when one is not told what it will cost one and what are the known side effects ??
Yes, I will investigate Germany now for a combined Lu-177+ Ac-225 therapy. I 'll bet the Germans are far more efficient
I contacted them as well couple of weeks ago. They replied to the few initial messages, but after I asked about the prices and success rates they never replied. I think I read somewhere on this forum that the prices for those treatments in South Africa were very low, but I guess we'll never find out :).
Thanks, Brundo. That re-confirms to me that South Africa (this place in Pretoria) is dicey. They don't want to talk about 1) success rates or 2) side effects
From this board, I got the prices from someone called Ldb01's post. She said that Lu-177 cost 75,000 Rand per infusion while Ac-225 cost 6500 Rand per infusion.
That itself seems dubious. Most places, including Bombay, price Ac-225 higher than that of Lu-177. Here its the other way and with an astonishingly big margin.
Bottomline for me : Avoid South Africa for Lu-177 and Ac-225.
Here's a post from 5 months ago you may find interesting: Published without his permission I might add...
Lu177/Act225 Heidelberg
Miguelnumerouno
Miguelnumerouno•
5 months ago•19 Replies
Apologies for late reply on this to you all and I'll do so as a block/ bullet point on the logistics of getting the above and what actually happens when you do.......there is a wealth of information on the net regarding the treatment which I have now had and I hope some simple points below will assist those following :
Contacted University Hospital Heidelberg Tuesday 5th March on their International Page and started uploading documents, scan reports, blood results etc. to a personal page . You will be issued an IO (International Office) number for all communication. DO NOT WASTE TIME trying to phone.....follow their procedure to the letter....the page is in English and easy to follow and you will NOT further matters unless you do.
Couldn't get my last scan sent from London Clinic so did a Royal Mail signed/tracked job received by them 8.40am Monday 11th. E mail to me one hour later that I would have plan , price and appointment within 7 days. This was received next day on 12th for treatment 18th March.
TRAVEL
UK to Frankfurt by plane about £370 . Train direct from airport to Mannheim, change required for Heidelberg....there are a number of stations depending upon where you are staying.....I travelled Sunday 17th March and alighted at Hauptbahnhof Heidelberg, main, and as walking through exit concourse could see Ibis Hotel on right . Rooms there more than adequate and breakfast very good for 12 euros.
TAXIS
Directly outside hotel...11 euros to Kopf Klinic ( well known to the drivers) ....ten , eleven minutes at 9am.
REGISTRATION
Told to go to 4th Floor Nuclear Medicin. REGISTER FIRST : Main door ....ahead and 50 metres on your left ...glass block with lots of shrubbery around it above main door of which exhibits a clear numerical sign for a ticket which you collect and wait for that number to be displayed . 15 minutes documentation .
CAFE
It's on the ground floor if you wish to top up some foodstuffs, fruit drinks.
STATION (ward)
4th floor....you will be allocated your room with wash basin and WC ....shower is some 20 metres away. Bed, desk, chair, TV limited English. Fill in dietary requirement sheet .
FRIDGE ......No.
WINDOWS
These are ' tilt and turn', ie you can open them fully inwards and you will need to ....rooms are in full sun all day so I moved a chair up to the open window and got a tan!
EXCERCISE
You will be in the room a long time.....I actually paced the room and ensured that the fresh air flow as above was there.....minor point but important I feel. You will not be let out of the room for walking nor anything else.
CANNULA
Following arrival at 10am cannula inserted and drip. Meet Doctor in charge of you.
INFUSION
About 1pm of Lu177/act225.... Takes 20 seconds....two phials by same Dr.
MONITORING
Frequently for first 24 hours....blood pressure in particular.
FOOD and WATER
Food supplied....it's ok....bore no resemblance to the diet sheet I had filled in but I had additional with me. You will be encouraged to drink plenty of water which they will bring you....still or gassed.
DRIP
You will stay on that until late evening first day.
SCAN
Following 7am breakfast Tuesday and radioactivity sweep , downstairs to where you will be left with radiologist's for full body CT ......you will be given an image of same to indicate treatment distribution.
Back to ward meeting with Dr discuss scan etc and further drips / monitored through day.
THIRD DAY
They will want you to leave early ( no later than 9am) and will issue a report for the airport ( security.... I had no problem) together with synopsis of treatment given and test schedule.
HOME TESTS
Full bloods and PSA after 10/14 days then 4/8/12 weeks after treatment.As with others there will possibly be a rise in PSA initially but others may indicate stability in one or indeed even response. These results are to be e mailed ( info . on sheet) back to them for:
FURTHER TREATMENT
If it works there should be a fair indication at 4 weeks with PSA decline.....continue monitoring and send results. Decision made for further rounds and if appropriate, revisit about twelve weeks for PSMA / Pet scan additional infusion. Maybe 3/4 visits but this is very individual.
COST
Without PSMA/ Pet scan 13150 euros, about £11500. I have not been quoted for the 12 weeks scan.
LANGUAGE
Certainly the Doctors have very good English command and some of the other staff too. I speak a little German and you will find that those who can't speak English will have a translation app on their phones......put one on yours too and you will not have a problem.
VISITORS
I travelled by choice alone : your visitors ....and staff ....will be behind a radio protective screen built like a high breakfast bar within the room . I found myself very tired first 36 hours but that could be travel, the occasion coupled of course with the treatment I am already on so very happy with my phone, iPad and a book ( free good quality wifi in the room) and a comfortable bed !
RELEASED
" Bailed" at 9am Wednesday after leaving my case there on the ward for collection later and into the fresh crisp air rolling along the banks of the Neckar along which I walked and sat for an hour at exactly the same spot where I had been as a young boy learning German nearly 50 years ago with all ahead of me......you can only imagine the thoughts but then off for coffee with a very positive step knowing that Mission One had been accomplished!
FEELING:
lower back consideration....nothing startling and the " feeling " is dissipating. no nausea etc and just going out into the sun in Tenerife when I send this.
As said to one gent....this is NOT AS DAUNTING as it may appear. The simple key is research....know where you are going.....physically that is.....Google maps, images etc, what the treatment plan is and how you are likely to feel....you will find the staff are all particularly helpful and what's 72 hours in this lot anyway.
Greetings. My experience in Australia, August 2019, was the cost of fused CT/PSMA scans varied around $1500A in Perth, Sydney and Brisbane (a number of centres available- use web search). And Lu177 treatment at GenesisCare was $10,000A per treatment in 2017. Four treatment were not curative for my oligometastatic soft tissue lesions, but likely gave me TIME. All the best. =Rob
I am in a similar position as your husband and have been referred to Dr. Ezziddin by my urologist and oncologist. Can you confirm his email? I've seen it as ".com" and ".eu". Also, interested in knowing if that's where your husband ended up and how he's doing.
I will detail my diagnosis and treatment journey elsewhere. Important details are PSA 18 in Jan. '11; lymph node involvement; radical prostatectomy, salvage radiation, and ADT since then. PSA rising for the past year or so to 11.5 three weeks ago; hormone resistant. PSMA 4 days ago (my 3rd) shows several new bone mets and more lymph node involvement.
Like a lot of us, I'm trying to get the Lu-177 as soon as possible. Any guidance/info is greatly appreciated.
Hi paige20180. It's been a while since I read your post concerning PSMA radiation treatments. Did your husband undergo any lu-177 / ac-225 treatments overseas? Also is he using deworming meds at this time, how have those gone?
Last December 23rd I was diagnosed with stage four metastasized prostate cancer and informed there is no stage five (Think Frank Zappa). People we know suggested we look into Radioligand therapy a nuclear-targeted, cutting-edge, therapy that's conducted in only 5 locations around the world, Bangkok being one of them. My daughter Phedra was all over it and right after our Vietnam cycle trip, I had my PSMA Pet scan then two weeks later my first treatment at Bangkok's world-famous Samitivej Hospital. We stayed there for three months (one treatment per month). I'm profoundly grateful to report on seeing the last scan that I am now in total remission and cancer-free. I have dropped from a PSA of 9.24 ng/ml to 0.16 in 3 months. A miracle of modern medicine. Bangkok, having less than 100 deaths due to Covid is possibly the safest country in the world for medical tourism.
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After RP had a PSA of 1.7. Went for a ga-PSMA scan wondering what’s next?
Can't treat what we can't see
Time for Lu-177 Travel input needed
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