Here's the current map:
pylarify.com/ordering-and-r...
Medicare hasn't yet agreed to cover, but I've heard some private insurance has. Get pre-authorization.
Pylarify PSMA PET scan availability i... - Advanced Prostate...
Pylarify PSMA PET scan availability in the US
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Tall_Allen
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64 Replies
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Thanks a lot, TA. The world of PC has changed. No more traveling to NIH or Coulmbia in NY trying to get one on a clinical trail basis 
The only thing that makes me nervous about this roll-out is how qualified the radiologists are. I trust that Jeremie Calais (UCLA) or Thomas Hope (UCSF) know how to interpret the scan.
I totally agree with you. I had two of them already done within a year and half. How about in NY? Do you have any good thoughts on some?
Pylarify started at Johns Hopkins. They and NIH would be most expert with it.
I work at NI H I don’t meet there trial.
Memorial Sloan Kettering, was part of the studies leading to the approval of DCFPyl.
Had G68 scans at both UCLA and UCSF over the last three years. They have definitely affected my treatment plan.
lots of learning curves ...🥶
It's something I'm keeping my eye on. Thanks.I talked to my MO today and, in her opinion, my PSA is too low to even do scans.
slpdvmmd in reply to
My psa was 0.7 at the time of my pylarify scan. It vividly demonstrated three metastatic lesions in my left supraclaviclar fossa missed on standard imaging as well as axumin pet scan done at a major academic center. Hope this helps.
Thanks for the information TA !!!Good to know
Thanks for sharing this.
I also appreciate the info, TA! I'm waiting on a possible PSMA scan clinical trial at UCLA. I'll remember the name Jeremie Calais. Do you know if he reads scans for Dr. Matthew Rettig?
He’s their top expert on it
High TA, is this some new radioligand that they have developed?
It’s fda approved
TA does BCBS cover a PSMA?
Idk. Call them and let us know.
TA, for a person with, say, three or more existing bone mets, is there currently any point in getting any kind of PMSA scan? Would results change treatment options at all? Thanks.
I asked Dr. Sartor at Tulane about it earlier this week and they have it available at Tulane however their criteria is for PSA to be 0.2 or higher and the cost is $3300.I wonder why Medicare is not covering it yet if it is FDA approved.
Ed
Outrageous their protocols are written for high risk and metastisis , When all early and intermediate should get this scan
It is useless for them.
I suspect they will eventually.
Which patients do you think could benefit from performing this scan? In the link they mention two groups:
- men with suspected metastasis who are candidates for initial definitive therapy.
- men with suspected recurrence based on elevated serum prostate-specific antigen (PSA) level after initial treatment.
If you already know you have APC - when is a PSMA PET scan useful?
It will definitelly make sense before starting a radioligand therapy like Lutetium. It has to be PSMA detectable to be able to attack it and to be able to measure the impact of the treatment on the mets
I agree. Or any psma targeted therapy.
TA, I was in a clinical trial for something called rhPSMA last October. I believe this was an 18 F ligand from Blue Earth Diagnostics. Is this the same or similar to Pylarify? If different, have you heard anything good or bad about rhPSMA? Thanks.
Not the same but good stuff too!
TA: Is there data comparing F18-FDG with Ga68/PSMA and with Pylarify/PSMA in terms of the smallest size of metastatic lesions that each of these scans can detect, and if so, what are those sizes? If there is any data, I know you well enough to know you will provide links.
[I'm BCR after IMRT in 2015 with a rising PSA, currently at 6.8. I assume all three scans could detect metastatic lesions if large enough, but wonder which can detect the smallest lesions and at what size.]
Thanks!
Minimum is about 4-5 mm. It doesn’t matter which pet indicator.
Thanks TA. So if the minimum size detectable is 4-5mm regardless of PET indicator, what makes Ga68 and Pylarify superior to standard F18-FDG? Is it that FDG is primarily glucose-sensitive and therefore might overlook lesions (regardless of size) that the PSMA-sensitive indicators will catch? Or are there other reasons that both PSMA indicators are believed to be superior?
Read this:
prostatecancer.news/2016/12...
Yes, I'm familiar with that very excellent page. However, it still doesn't make clear to me what is meant by certain PET indicators being "more sensitive" than others. If "sensitivity" has little to do with lesion size, is it simply the tracer's sensitivity to glucose vs. PSMA present in the lesions that makes the latter more sensitive to PCa and therefore a more valuable diagnostic tool in BCR?
Sensitivity means it is able to find the cancer that is there. Each indicator looks for cancer in different ways. 95% of PC metastases express psma. Very few PC metastases metabolize glucose until very late stages.
Thank you. Very clear now.
By the way, thanks TA. Based on your refence some months ago, I called and was able to get in the clinical trial at the West LA VA for a F18 PSMA PET CT scan. It caught one spot in the bone and one in lymph node. That led to them immediately putting me on Eligard and Zytiga (tried Xtandi, but my head almost exploded).
As a follow up I went in yesterday for the new FDA approved F18 PSMA PET CT scan at the VA, which was ordered by Dr. Rettig to review my current status along with a PSA and testosterone test. We will see how things are going. I really like Dr. Rettig (VA and UCLA).
Because of radiation cystitus, I am also going in for Hyperberic Oxygen treatments. Hope it helps. However, having some problems with this due to Asthma and recent lung cancer surgery. Apparently pure oxygen can irritate the lungs and the air is really dry. Food for thought.
I learned earlier today that the UCLA PSMA/Pylarify is a randomized TRIAL and there's a chance you may be put in the control group and not given the actual PSMA scan. Not so ideal.
Or you can pay $3000 and be sure of getting a PSMA PET scan.
Yes, at another location altogether. The woman I spoke with at UCLA led me to believe that the trial was the only option at UCLA Dept of Nuclear Medicine.
At the Westwood campus. Contact Jeremie Calais (310) 206-3226. They make you pay upfront 
Thanks TA!!
The link you gave is helpful and provides hope.
But it doesn't list the specific hospitals in those cities.
Kansas City isn't a huge city, but it still has 6 or more hospitals just on the Kansas side. And I have no idea on the MO side.
Any idea where one might find that specific listing without calling Pylarify?
Call Pylarify.
Hi there Tall_Allen, remember me? I’m one of the widows of Jeff Nolan. He passed Oct 29-21’. Wanted to thank you and others I see still on this forum! You & others gave me so much research for me! Since Jeff passed..about a couple months later-I moved closer to my folks here in outskirts of MIssouri (NW). I do wish now I stayed in CA, there’s nothing like home!
I hope you’re well? And TY for everything for the group!
Thanks for keeping in touch. I'm well, except for the expected indignities of aging. I don't think I'll leave California, although most of my family is in NYC (where I'm from). I don't think I'd be happy in a rural area, although it's nice to visit.
Thanks TA, unfortunately their map doesn't drill down to specific hospitals, nor does their side bar listing.
I have a call in to them, as they seem to insist on giving you a call back instead of talking right away..
They called me back within a couple of days. They said they hoped to have a full listing of sites that use it in January.
That's great!! Thank you!!
Just maybe the need to get the chart, and review it again too..who knows??
To anyone in the Kansas City area, Pylarify called back.
There are two hospitals in the KC performing this scan.
St Luke's and Research Medical Center
Hi, I’m in KC but I wanted to tell people that in SanFrancisco they have this ultra PET-SCAN in real time available plus there are several clinical studies they have ongoing too. Stay Strong & Blessed!!
I called Lantheus directly. They were extermly helpful and send me an emial with all of the sites in Ohio.
Dr. Mark Scholz of Prostate Oncology Specialists in Marina Del Rey CA just wrote me an Rx for a Pylarify PSMA PET scan. He told me he believes it is available anywhere PET scans are done, even in my area of southern Oregon, and even by relative “beginners.” I left a message with Lantheus and they haven’t called back yet four days later, but Dr. S says they’ve been slammed, so I will try again Monday. He also indicated that the scan could be sent elsewhere to be read to double-check the local radiologist’s report. He wants me to have it within two weeks, so I hope he’s right!
I notice that the map on their site is of locations *producing* Pylarify, not locations doing the scan. It seemed that a PET scan location could order it to be sent to them, which may be why Dr Scholz believes it can be done just about anywhere that’s equipped.
Call them to get locations near you. They gave me a full list in California and Arizona, but not Oregon. They got back to me in 2 days. It's not everywhere.
Thanks! I plan to try again on Monday and will report back. We just got back from L.A. and hope we don’t have to travel too far. But we will if necessary, of course. Do you recall if there was anything in far Northern California by any chance? We are just over the Oregon border on the I-5 corridor.
You are looking at an old post. I updated it with a more recent list last month. But even that is out of date. Here is what they sent from Northern California a month ago:
SIMONMED IMAGING - DALY CITY
455 Hickey Blvd Ste 200
Daly City
CA
94015
KAISER PERMANENTE- ROSEVILLE
1600 EUREKA RD
ROSEVILLE
CA
95661
KAISER PERMANENTE- DUBLIN
3100 DUBLIN BLVD.
DUBLIN
CA
94568
Thanks for this. I will keep these for reference and hope for closer. I’m sure it’s’ expanding rapidly.
Updating from my posts the other day: My dear wife called Lantheus (1-800-964-0446) about Pylarify availability early this morning. Got right through and was helped by Kim who gave her the closest availability to our area of southern Oregon…OHSU in Portland (they said they are booked until Feb 1!) and Northern California PET Imaging Center in Sacramento (888-738-3211). NoCal PET Imaging was very helpful and told her exactly what to have my doctor fax them. By 3:30 today I had an appointment scheduled for next Monday Dec. 20. It’s almost 300 miles, but worth it. Their results turn around in 24 hours.
Lantheus said the availability list changes weekly. The list only shows facilities that have contracted to buy Pylarify. She said that any facility doing PET scans can order it if they want to. Kim even coached my wife on how to approach the one local facility in Medford OR, but they were not willing. Kaiser Permanente was also mentioned, but we are not members, and they aren’t local, so we didn’t pursue that option.
Hope this info helps someone.
hi there, I know Stanford back in 2000-?2021 was doing these tests for free Jeff wasn't interested in my opinion he didn’t want more negative news !
I can understand that now. However looking back I can see that it would be a great benefit because he would get a second opinion it that way because his Dr . was part of a group so they had to go by protocol and this doctor that he had absolutely did not want anything else with His doctor didn’t want any other clinical trial with the one he was on with his doctor and honestly Jeff was tired of them !
Wishing You all good will & positive thoughts will take over you !!
Keep the Faith!!
Chandra
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