Quest for Lu 177 therapy continues 2.0

[Cleodman]

On Dec 17 I was supposed to have a 68-Ga PSMA PET CT at UCSF but never happened. I was notified that Blue Cross Blue Shield was refusing to pay for it which did not surprise me despite the recent FDA approval. That was not the issue. The UCSF insurance claims moderator then proceeded to tell me that the MR portion was covered. Confused I asked what do you mean MR portion? It was suppose to be a PET CT. Well after some discussion we find out that the Nurse Practitioner for Dr. Aggarwal entered in the order incorrectly. At UCSF they can do MR PSMA PET’s and CT PSMA PET’s. Since I was looking for therapy abroad I wanted to compared apples to apples despite the superior resolution of the MR. So frustrating! Hotel and flights had to be cancelled the day of. Thankfully they were both understanding.

Germany is shut down for new international medical patients until Jan 31, 2021.

We booked flights to London to get seen at Genesis Care for a PSMA PET CT and hopefully therapy in early January but our flight on Delta from New York to London was just cancelled. Likely due to reports of the new COVID strain there.

So looking at Sheba International in Tel Aviv, Israel. The price is right(ish) but they want me to go for 1 month and 10 days and despite there grasp of English I feel we constantly have communication breakdowns.

Mexico can treat me in February. Austria can treat me now but the charges are so high and they use a modified protocol that is not really backed up by data and science as far as I know. I know some members here went there and had a good experience but something to me does not sit right. I don’t like the idea of making big profits off people who are just trying to survive.

Hopefully some better news soon...

[RyderLake2]

Australia?

[Cleodman in reply to RyderLake2]

Australia is closed to even medical treatment seekers right now. Also flights are few and far between and crazy expensive with long flight times. Anywhere from $8000-$12000 return to Sydney or Melbourne but double that for Perth.

[Tall_Allen]

Get the PET/MRI - why wouldn't you want the superior resolution?

[Cleodman in reply to Tall_Allen]

I want the diagnostics to match up with the therapeutics and this was mirrored by all the nuclear physicians that I am seeking treatment for. None of them use MR with the PSMA PET. Maybe I made a mistake I don’t know.

[Tall_Allen in reply to Cleodman]

All you really care about is whether your cancer is PSMA-avid. I don't understand your concern about diagnostics/therapeutics matching - what does that mean? Of course they dont use PET/MRI- there are maybe only a dozen such machines operating in the whole world - they are very expensive.

[Cleodman in reply to Tall_Allen]

These places outside of USA can be very specific in what they want. No Tc 99 or F 18 scans. Has to be 68-Ga. But I hear you. When I called to have it changed they took me off the schedule immediately with next PSMA PET being Jan 14. I had no idea I would lose my spot in 5 min. So when I found out I could not do the PET CT and ask to just have the PET MR at my same time it was too late. I made a mistake based on fear that one of these places would not accept the MR PET. Was not thinking clearly in retrospect.

[treedown in reply to Cleodman]

That's tough Cleod-man. You have a lot on your plate and having to be your own advocate and then some must be a lot to handle. Be easy on yourself, what your doing would be hard for any of us. On top of that the urgency of getting something done must be keeping you up at night. So glad you have a loving woman by your side for support. Keep up the fight, from the bleachers it looks like your doing a great job.

[HopingForTheBest1]

Possible PSMA clinical trial option for you that recently opened in NY - trial # NCT04266392. I got in quickly and having the scan in 2 days. They do need a recent Auximin scan that they will compare against. Cost of trial is covered.

[bean1008]

Damn Covid is sure messing up a lot of people's plans! I wouldn't mind a trip to Australia when the time comes for finding the latest, greatest treatment. Best wishes to you, buddy!!