LU 177

[Armywifedublin]

Looking to hear from anyone who has gone and had the LU 177 treatment done. Did you have trouble with getting the hospitals to accept you if you are not castrate resistant? Did you book through the hospitals or booking health? Any problem with travel with current COVID protocols? Looking at travel to Germany or Austria.

Husbands current health right now he had recent PSMA Scan showing distant metastasis in chest, pelvic area, shoulder and kidneys. Plan for now seems to start back on ADT for six months repeat scan. No bone involvement PSA was 2.7 he works out five days a weeks, weights and cardio diet is very good does get a steak on our Anniversary but for most part vegetarian. But we are interested in getting the LU 177 sooner then later while he’s strong and in good health.

So would like information on who to contact in Germany and Austria. I’ve seen posts but most have been over two years. Just concerned right now with COVID uptake in the Hospitals. We also are both vaccinated and had are booster shots.

Stephanie (Armywife)

[NotAlwaysSunshine]

Hello - What are all of his past treatments? Where are you located in the US?

[Armywifedublin in reply to NotAlwaysSunshine]

He had radiation to pelvic area where prostate was.. 2019 Did ten months total of ADT took his PSA to undetectable till now raised to 2.7 just had PSMA Scan showed distant Mets to several area but very small.He has been in touch with Dr Eric Klein at Cleve Clinic who has been following Jeff’s case also his radiation Dr here at The James now. He has an apt with his oncologist at Tge James Nov 10th. We know the plan or should I say Standard of care will be putting him

back on ADT and add Zytiga so two ADT drugs at once.

We are looking ahead though and want to get the LU 177 lined up.. better to treat sooner then later.. hubby is very strong 💪 works out five days a week you have to even when on ADT!! And he eats a very healthy diet since diagnosis.. we are up to date with all the latest treatments! Knowledge is key!

He follows Dr Mark Scholz watched all his Prostate Cancer Summit videos along with Dr. Moyad and Dr Eugene Kwon from Mayo.

The Dr’s he sees are impressed with his knowledge on his cancer and the current treatments..

we were going to New York to MSK but have not been back since Covid. We are treating now at The James Here in Columbus Ohio but we are in touch with them..

[NotAlwaysSunshine in reply to Armywifedublin]

I'm going to message you.

[tango65 in reply to NotAlwaysSunshine]

I had Lu 177 PSMA treatment at the Technical University of Munich in 2016. It is a good place. They have a lot of experience with the treatments, some has been published in peer reviewed journals.

I arranged everything directly with the doctors and the hospital. If interested you can contact the office for foreign patients:

mri.tum.de/node/5909

Other people go with Dr. Baum who also has a large experience in using this treatment and also Ac 225 PSMA.

curanosticum.de/team/aerzte...

[Armywifedublin in reply to tango65]

I agree so does Hubby.. so I take it you emailed them? Also found a place in Muenster Germany? How many treatments did you do? May I ask cost of each and how long were you in Germany?

[tango65 in reply to Armywifedublin]

I had multiple LN mets in pelvis and abdomen only. One treatment was enough to made them all PSMA negative as confirmed by 4 PSMA PET/CT, last one done January 2020. I'll have a new one this week.

One has to stay 3 night in the hospital . I was admitted on Friday morning and I was out by Monday morning. No complications, except for some fatigue for some hours after the infusion and some edema which resolved with one Lasix pill.

The cost is around 12 K euros , it may be more if they decide to do a PSMA PET/CT before treatment (about 3K euro). I went 2 days before treatment and I came back 3 days after the treatment.

I emailed with Dr Schwaiger and Dr Tauber, but I believe they are not in charge of the Lu 177 PSMA program anymore. The office for foreign patients may guide you how to contact the people doing the Lu 177 PSMA treatment.

GP24 in this forum knows all the places in Germany doing PSMA therapy and he had Lu 177 PSMA treatment a couple of times.

[Hidden]

GregHouston has some posts about doing LU-177 early rather than later.

[Rldsouza]

My dad just got back from Germany on Sunday 1st lu177 treatment went through booking health to get a quick appointment next one he will go through the hospital much cheaper on Dec 13th. Next session is 6800 euros.

Hospital info

[Armywifedublin in reply to Rldsouza]

What Hospital and Dr did he see?

[Rldsouza in reply to Armywifedublin]

Helios is Berlin Dr. Stefan Dressel

[Armywifedublin in reply to Rldsouza]

Also is he booking next apt direct with hospital? I’m staying away from booking health their prices are high

[Rldsouza in reply to Armywifedublin]

Yes he booked direct for the second time it was ridiculous how much more booking health charged but we were in a rush to get him the treatment fast and they were the only ones that were responsive. I had emailed and tried calling different hospitals with no responses.

[Rldsouza in reply to Rldsouza]

Booking health was excellent though but not for all the extra money

[Victoriamacpack in reply to Rldsouza]

Can you share the difference in pricing? I’m trying to see if the ease in making arrangements is worth the extra $. Thank you.

[Rldsouza in reply to Victoriamacpack]

Hi it was 23,000 euros which includes the PSMA scan. For the second appointment through booking health they quoted 19,000 euros through the hospital it’s 6,800 so there’s definitely a big difference in price.

[Rldsouza in reply to Rldsouza]

Second appointment there is not PSMA scan required

[Victoriamacpack in reply to Rldsouza]

Thank you. That’s very helpful.

[Armywifedublin in reply to Rldsouza]

What hospital did he end up going to ? I’ve heard two so far one in Munch and one in Muenster Germany?

[ARIES29]

I had LU-177 in Australia at Genesis Care,$10K each & it worked for me but for some reason they stopped at two infusions.

[Armywifedublin in reply to ARIES29]

I’m so happy for you.. We are trying to schedule it soon.

[Jasmann]

I went to the Helios Clinic in Wiesbaden, Germany. I wanted Prof. Dr. Richard Baum as he is very experienced in this treatment and that's all they do. They are very efficient and their equipment is the latest and greatest. The only restriction that I am aware of is the ability of the tumors to uptake the LU-177, which is typically determined by the PSMA-PET-CT Ga68. And, of course, renal and lipid ability to handle the assault. Highly recommend this place, but there are several excellent clinics in Germany if you can't get to see Baum. Contact is:

Natalie Groppler

-Patient Coordinator

CURANOSTICUM Wiesbaden-Frankfurt

in der DKD HELIOS Klinik

Aukammallee 33

65191 Wiesbaden

T [phone]

F [phone]

[e-mail]

curanosticum.de/

My life is back to normal with no treatments or restrictions of any kind. Best of luck and if you need any further info, please let me know. Always happy to help a fellow fighter.

P.S. There's a big U.S. Army base in Wiesbaden. They may be able to assist while you're there.

[Armywifedublin in reply to Jasmann]

Thank you for your help. May I ask what the cost was and how many treatments did you do? How long ago was this? How are you know? Have you had a recent scan

[Jasmann in reply to Armywifedublin]

The PSMA PET CT is around $4000. Their machines are the best, so I recommend you don't try to find it cheaper in the States where the scanners are outdated. The treatment, further scans, hospital stay, consultations, etc. are around $10,000. These are guesstimates. Nataly will give you the current breakdown. I needed two treatments at least 12 weeks apart. This was a couple of years ago and my last scan in May was clean. As Dr. Baum told me, don't put cure and cancer in the same sentence. It will most likely come back, but then a single injection should knock it back down for several years. He is one of the top researchers in Germany from Bad Berka and has also developed this therapy for breast, pancreatic, and a couple more cancers. Besides that, he is an incredibly personal and caring physician. Check out his web site. I am confident that in a couple of years, he will have a newer and better treatment than the LU-177. The trick is staying alive and healthy to be around when it comes. I had no side effects and, as I mentioned, my life is totally back to normal. No treatments. No medications. I know 4 men that had the LU-177 and all have had similar effects. Some were far more advanced than I, but it sounds like your husband is at my level when I went in. Best of luck and let me know if you need anything else.

[poppymom0211 in reply to Jasmann]

My husband also had 3 treatments at Dr Baum’s clinic in 2021. And one treatment through Booking Health(very $) in Berlin in late 2020. His cancer is very advanced with Mets throughout his skeletal system and lots of PSMA. From last December until August of this year, he felt good and his PSA reduced dramatically and we were almost having a “Normal” life. However, the treatments had an adverse effect on his Hemoglobin and Platelets and Dr Baum says they are too low for further treatment. His PSA is rising and he is painful and weak. He has to have very frequent transfusions to keep his Hemoglobin in a manageable range. He is basically on Pallative Care now. I don’t want to seem negative but treatments depend on how advanced your cancer has become. I will say this - Dr Baum’s clinic is very SLOW to respond when they don’t think they can help you any longer. On the up side, I have heard from several doctors that LU177 should be available in the US in February 2022. - so no more agonizing traveling!!

[Jasmann in reply to poppymom0211]

I'm very sorry to hear about your husband. Yes, I was told that I probably got in just in time to get the results I had. A good friend of mine was very advanced and his scan looked like a Christmas tree, but both he nor I had surgery or any treatments. He is doing well, but being observed more than I am. Baum indicted that some chemos and radiation can impact the uptake of the LU-177. He is very popular around the world and yes, I think a little overwhelmed with the patient load, keeping the response time slow. Keep fighting. There are new treatments happening everyday. I'm on the net looking a lot. You may want to look at the mRNA clinical trials for PCa. BionTech, the Covid vaccine guys, developed that transport years ago as a cancer treatment, not as a vaccine. It just happened to lend itself at the right time. It's in Phase 1/2 stage and there's not too much out there on any results. I have my sights on it as a backup. Best of luck and don't stop fighting.

[ishitasen]

here is an experience of lu177 therapy shared by Greg youtu.be/MI8yKRm0HTc(Not working as expected?)

[Fitzbruce1 in reply to ishitasen]

Congratulations! That is a fascinating video! Where did you have it done? What is your cancer burden?

[Cosmo3]

I had 2 treatments of LU177 at the University of Marburg Hospital in Marburg Germany. My 3rd treatment will be soon and will be AC225 since LU177 is not producing the desired results. No problems with entry into Germany as long as you have your vaccination card or a recent negative Covid-19 test with you. You will need your vaccination card with you at all times to enter into hotels, restaurants, shops, etc. so it is best to make a copy of you real card and laminate it and carry it with you at all times. That work great for me. Also, I stayed for 10 days both times traveling to Austria, Munich, Heidelberg, Frankfurt, and Marburg. Had no issues traveling at all due to Covid-19 protocols. I went through Booking Health first time because I had little success trying to contact and schedule myself. Once you become a patient, you can go direct and save big $$. Some hospitals would not take me because I did not have Chemo first and the University of Heidelberg Hospital comes to mind. I was told there were only 3 hospitals that would take me without trying Chemo and Marburg was one of them. I don’t know anything about castrate resistant acceptance requirements. I hope this helps.

[Cosmo3 in reply to Cosmo3]

Oh if forgot to give you contact info.

Susanne Zapf

--

International Office

Universitätsklinikum Gießen und Marburg GmbH

Standort Marburg

Baldingerstraße

D-35043 Marburg

International Office

University Hospital of Giessen and Marburg

Marburg Campus

Baldingerstr.

35043 Marburg, Germany

Telefon/Phone [phone]

Telefax/Fax [phone]

url: ukgm.de

[Eugmn]

I am currently undergoing Lu177 treatment at Fortis memorial in India. I have only had one treatment. Everything is going good so far. I have all my details listed in my bio.I did a lot of research on some clinics in Germany. They seem to be very good but also very expensive. I started comparing to India and found that I can get basically the same treatment for a fraction of the cost, so that’s the route I took. The flight is a bit longer from the US, but so far I am happy with the treatment

[wpopomaronis]

Had treatment At Johns Hopkins Hospital. PSA was 93 and after three treatments it was at 36. Tumors had stopped growing but they were multiple. This lasted for five months and then they started to grow again but I was grateful for the time. This was part of a clinical trial.

[sjpoli46]

The FDA is approving Lu 177 sometime in Dec and it will be available in the US, based on his condition you might want to wait.

[Hidden]

I choose to go to India. I saw Dr. Ishita Sen at Fortis Hospital. She is wonderful. No problems getting into India and experience being different than US hospitals it was very acceptable and the cost was more reasonable than Germany. Dr Sen’s team is very helpful and informative. Good luck on your journey. Tom B

[j-o-h-n in reply to Hidden]

NOTE: Dr. Ishita Sen is now a member of H.U. - her userID is "ishitasen". There is a funny word in her first name.

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 10/26/2021 7:16 PM DST