Axumin PET still negative...Went to UCLA last Monday....PSMA PET showed multiple up take from my upper arms, spine , pelvis and two lymph nodes near the pelvis which were small....My OC said LU-177 is what she would want but not in US now with the studies closed out..Is anyone able to travel anyplace currently for LU-177 overseas, and if so , who do I contact...I am not restricted in anyway by finances.. Would appreciate any information...Blue Skies , Sky King and Penny (woof)
Time for Lu-177 Travel input needed - Advanced Prostate...
Time for Lu-177 Travel input needed
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pilot52
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You can contact the TUM clinic in Munich for a PSMA therapy. They will send you a letter that you need to get into Germany for medical reasons. So you do not have to get into quarantine when you arrive. Before you return, you can make a Covid-Test at the TUM.
Hi Pilot- TA posted a few days ago a link to studies in the US are are currently recruiting for Lu-177 and other PSMA radioligand therapies: healthunlocked.com/advanced....
We were going to go to Germany for Lu-177 for my husband in June, but his Ga68-PSMA scan showed some potential non-PSMA avid lesions in the lung (we still aren't sure if they are cancer or not), so we postponed until it is determined what they are. We were in touch with Dr. Baum in Frankfurt/Wiesbaden: curanosticum.de/. Same as TUM in Munich, they will send a letter for medical necessity for travel. Dr. Baum and the clinic responded to our inquiry right away and Dr. Baum called us to discuss.
Do you have contact numbers?
Just sent you a PM, but general numbers are here, you would contact the Wiesbaden location: curanosticum.de/.
Just curious about the technology. If they are non PSMA avid lesions, how are they detected with a PSMA scan? Thank you.
A PET scan is always done along with a CT, so they were picked up by the CT.
I think that Australia now has the most advanced Lu-177-PSMA protocols. Contact the Peter Mac clinic in Melbourne. See Michael Hoffman if you can.
petermac.org/users/prof-mic...
Thanks will do ...
Tall_Allen
"Australia now has the most advanced "
1. That's very very interesting. It seemed like Germany was the place to go for LU-177 not so long ago.
I certainly get the impression that medical treatment in Australia is pretty low cost.
For English speakers I think that is also sort of a more comfortable place to go as well.
2. What about the other types of PSMA treatments?
It seemed not so long ago they we looking at lots of options for PSMA treatment, at least in Germany... especially with carrier molecules, including that one with lesser collateral toxicity to salivary glands and kidneys.
Is Germany still the leader in cutting edge experimental PSMA treatments? Or is Australia active there as well?
3. Thanks for doing such a good job of staying on top of all these advancements.... seemingly month by month. There is basically no other good source for this type of information. Certainly none that I am aware of.
And from my personal perspective I really like how you use this forum.
It seems you sort of put out bits and pieces as you learn them... then periodically compile your current learnings into very thorough reports on your personal blog.
Your last blog report was a magnum opus in my opinion. It pulled a whole lot of threads together for me.
Please keep up the good work.
Thanks. I enjoy putting together the reviews where lots of disparate studies converge. I know how confusing it can be to hear them all piecemeal. Because of my background, the quality of the studies is important. I know that some people on this forum will post anything, as if an observational study and a large well-dome randomized trial had equal import.
The Peter Mac Cancer Center in particular has really taken the lead in radiopharmaceutical testing. The newer ones are mostly still coming out of Heidelberg, so both are important centers. There are now half a dozen PSMA ligands being tried out (some in the US), and maybe the same number of alpha or beta emitters. There are also ligands that attach to cancer cell proteins other than PSMA, and entities other than radioactive ones (including some that cause immune killing) that can kill the cancer. It's a rapidly developing field.
Thank you so much . You really do good work....Blue Skies
1. "There are also ligands that attach to cancer cell proteins other than PSMA, "
Wow
2. I am personally convinced you have better situational awareness of the treatments out there than only a handful of MDs, most of whom are likely researchers as opposed to treating docs.
And you seem to be not a bad diagnostician, for telehealth purposes anyway. LOL
Correct....Tian Zhang at Duke has to see patients 1 day a week....her situational awareness is a little near sighted but she does help out quite a bit and is aware of everything new. Her logistical acumen is where I lend a hand..I was the first commercial pilot approved by the FFA on Xtandi. But also had help from an FAA doc who flies out of my airport...She is on board for what ever I need...She is on vacation this week but is reaching out to her colleagues around the country when she returns...when you suggested UCLA for PSMA scan it turned out she had it set up already because of our conversation...I just try to be proactive and not stupid...I read your post frequently because one would be foolish not too. She understands regardless of our relationship as doctor patient I am going where I need to go and her ego is fine....Blue Skies
I've got to say that I'm impressed by the MOs I've met - but that is in L.A. in major teaching hospitals. I don't know about the quality in community practice. But perhaps with one exception, they are more concerned with the patient than in coming across as having all the answers. I guess it doesn't hurt that I'm aware of their research before I go in, so I can always get a good connection on that basis. And my approach is always deferential - after all, they are the ones with hands on experience and connections to their fellow researchers.
Tall_Allen
"I'm impressed by the MOs I've met - but that is in L.A."
How are you able to meet with so many? Is that part of your patient support activities, so you are able from time to time accompany patients?
Or do they come out to speak at the local support group?
I participate in live support groups too. I make myself available to patients if they want me to come along. Covid-19 put an end to that 
Oh shit! That’s right
still flying Angel Flights, temps taken and they sit in the back....I figure it is the least I can do.......ATC understands if transmission garbled ....they just ask to retransmit
That is so wonderful! You get angel wings for doing that!
I went to Munich in 2016 for Lu 177 PSMA treatment It is a very good place. This is the link to the Office for Foreign patients:
The chrome browser will translate the page. They could give you the information about traveling and how to submit your medical records.
We all hope/pray you get a good clinic and Good results!!!
Good Luck, Good Health and Good Humor.
j-o-h-n Sunday 08/16/2020 11:48 AM DST
Hey dude thanks.....seems like you really have to have the monster grow to get the good stuff.... I had a very strong PSMA uptake with it not showing up on other scans....OC even admitted after I refused SOC that I should do well....I will say I have some upper arm pain and scapula pain more frequently but not bad....after I Peloton I think the endorphins kick in and I feel great.....I will be fine .......Penny (woof) and I are about to go swim, paddle board and play pickleball.....I have a Playmate Pickleball machine you load a 100 balls in....we both get another fun workout....tonight I will make dinner and I have a date with Stella.......................and a cold mug......thank you everyone for reaching out....Blue Skies to all......
THANK YOU!
By the way pilot52, you probably may know, Melb is in the state of Vic which recently has had a 2nd wave of coronavirus and Victorians are in lockdown. Fortunately, after going to stage 4 (curfews and only essential workers allowed out) numbers of new cases per day have dropped from 700s to 300s so hopefully they’ll still head down. The recent outbreak arose from the 2 week hotel quarantine of Australians coming home. You’ll probably get advice from the Peter Mac about restrictions, good luck with it and welcome if you do get here.
Another Aussie option is Theranostics. You have to pay - not a trial - but it’s cheaper than Germany and you could probably have Lu177 with Veyonda. Google it. Looks very promising. Also theranostics is in states other than Victoria as well, so much less of a problem with COVID.
Hi Hans, I did some googling and found this, as you probably know:-
Professor David Wong is presently the director of the Advanced PET and Nuclear Medicine Centre at Uniting Care Medical Imaging in Brisbane, Australia. In this position, he was instrumental involvement in the performance of the first Ga68 PSMA PET CT diagnostic imaging in men with prostate cancer on 16 July 2014 in Brisbane, Australia. Most recently in August 2017, David was involved in the first Lutetium 177 PSMA therapy in men with metastatic prostate cancer in Queensland, Australia.
Do you know how easy it is to get the treatment, other than the cost! I’m on the Gold Coast and may need to someday. I gather the Uniting Care is the Wesley Hospital.
Hi Ausi. To answer your question re how easy is it to get Lu 177 treatment: if you test avid enough with a PSMA PET CT and are willing to pay, I don't think it's difficult. I suggest you message Patrick Turner. He's in Canberra and has had Lu-177 treatment at Theranostics (in Sydney, I believe ) and is currently having some again - with Veyonda (a new Aussi medication that seems to enhance Lu-177). Theranostics has entered into an agreement with NoxoPharm to allow patients to have this combination treatment. Google it. Theranostics started in WA and, as well as the Sydney clinic, it has centres at the John Flynn Private Hospital on the Gold Coast and at the Chermside Medical Complex in Brissie.
As for David Wong: when I was diagnosed in Feb 2018, my wife, who is the researcher in the family, almost immediately 'discovered' David Wong and his clinic at the Wesley. Three days after being diagnosed we were on a plane to Brisbane (from Darwin) to see an MO the following day, who was coincidently also at the Wesley. The day we saw the MO we also booked a PSMA PET CT for 4 days later (cost by memory was about $600) and an appointment with Dr Wong a few days after that. As it happened we didn't proceed with the scan or the appointment, because we were advised that I was still too early in my PC journey to have Lu-177.
I'm now considering Lu-177 again. as an option. I've recently had a PSMA PET CT here in Darwin (for free). If you haven't had one, you should be able to get one at a public hospital on the Gold Coast or at the Royal Brisbane (for free). Only because of the possibility of maybe getting the combination treatment with Veyonda at Theranostics, I'm leaning towards that option rather than Dr Wong. Whichever way, it's not cheap, but less expensive than other countries and with no COVID restrictions for us.
Hope that helps. Cheers Jurgen
Thanks Jurgen, in fact, I’ve had radiation treatment at Genesis John Flynn on 4 occasions (3 instances/30 day ea EBRT treatment last year and once the year before) and know my RO pretty well. I’ve responded fairly well, my last PSMA PET showed no activity and my PSA has now dropped from 16, before the last zaps to 1.8 and has stayed there on my last blood check last month. My last zap was mid Dec 19 so I’m pretty happy with the result. I’ll contact my RO, LUT 177 was never discussed probably because of the cost and I’m not sure where in the bldg they do it, maybe the floor below the zap machines. My 1st zap treatment cost $800 as did the PET but as a returning patient it was paid by Medicare, PET also dropped to $450. Though I might have to rob a bank to pay for LUT.
Thanks and good luck, Ian.
By the way, it’s good to see our COVID new daily cases drop, Victoria are now down in the low 200s and NSW to 8. All other states are zero, state borders are still closed but hopefully not for too long. It’s pretty hard trying to schedule treatment when all this is happening.
You could also try Docrates Clinic in Helsinki Finland, though Covid-19 may impede that too.
Good luck!
Great thank you .....If I can get in with a medical waiver as a commercial pilot we just have to take a covid test to transition countries.....that gets us back into the USA ...I have a friend who flies for another company...took a vacation to Florida came home was taking the owners to the Bahamas went and got a test to show the Bahamas and bang was positive....Crazy stuff...
When I operate at work I’m exempt. I would not use my exemption unless I sign the release.
Following. My husband,s PSMA showed activity T5-T7 and a spot on a rib last week at UCLA. On our way to Mayo to come up with a plan. Appreciate all the info on LU177. Australia sound like they are doing amazing work but is so far it’s daunting. Much prefer the Frankfurt flight from Dulles. Thank you everyone for the information on going abroad during Covid.
Hi Paige, I’ve just replied to Hans (as above) re the drop in COVID numbers here in Aust. Restrictions are still pretty tight but if you did choose to come, and allowed, for treatment you would have to quarantine in a hotel for 2 weeks. More info on Genesis theronostics at John Flynn
genesiscare.com/au/treatmen...
The weather’s great here and it’s a lovely day on the beach today!
That’s sounds great! It’s the plane ride that stinks. Thank you for John Flynn info.
Yeah, we did it often when travelling to over there, pre COVID, 14hrs from LAX to Brisbane (1 hr from the Gold Cost), but then you have 2 weeks to sleep off any jet lag while in hotel quarantine!
Keep us informed....Frankfurt has forwarded my info...I agree with the flight...We must have crossed paths in LA..
Is anyone familiar with a center in Germany that does not require chemo first?
Dr. Baum (Wiesbaden/Frankfurt) was willing to treat my husband in the hormone sensitive stage with no chemo first.
I have been getting treatment at TUM in Munich pre-chemo.
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