Free PSMA PET/CT at Los Angeles VA fo... - Advanced Prostate...

Advanced Prostate Cancer

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Free PSMA PET/CT at Los Angeles VA for all veterans

Tall_Allen profile image
44 Replies

It is the DCFPyL PET/CT, which is even better than the Ga-68-PSMA-11 PET/CT. Open and free to all veterans at any stage. They only ask that your referring physician fills out the form above. The purpose of the trial is to determine whether the PSMA PET makes a difference in treatment decisions:

clinicaltrials.gov/ct2/show...

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Tall_Allen profile image
Tall_Allen
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44 Replies

If I wasn't paranoid about getting on a plane and flying cross country, I would definitely go. Where can I find a copy of the paperwork my VA MO would need to fill out? Thanks.

Tall_Allen profile image
Tall_Allen in reply to

NIH is still running their free trial, last I checked. Check to see what their waiting list is like.

clinicaltrials.gov/ct2/show...

StayingOptimistic profile image
StayingOptimistic in reply toTall_Allen

I went to the one at NIH. the whole experience was great.

RayF profile image
RayF in reply toStayingOptimistic

My son is a post-doc there, started in Jan. Still on furlough, but has been helping a tiny start-up in Gaithersburg getting a Corona-19 antibody test in the works.

RayF profile image
RayF in reply toTall_Allen

I looked into that, and was ready to sign up, but the contact person told me that I would have to stop ADT for one or two months, (I cannot remember which since it was a phone conversation). At the time I was not willing to do that. That was June 2019, I had been on ADT for 6 months, and PSA was dropping. I was disappointed since NIH is close.

fluffyfur profile image
fluffyfur in reply toTall_Allen

Unfortunately the NIH clinical trial is on hold due to COVID and they are temporarily not performing any scans. They have advised anyone wishing to do the trial to check back but not to delay treatment while waiting for a potential scan.

GeorgeGlass profile image
GeorgeGlass in reply tofluffyfur

Interesting because the LA VA is doing scans. Maybe the NIH started up again.

Hope59 profile image
Hope59

Thank you so much for posting this information for vets: access to this scan and free!

jimbay profile image
jimbay

Thanks so much, could you remind me what PSMA PET/CT is best used for? Does it have use in determining BCR after prostatectomy?

Tall_Allen profile image
Tall_Allen in reply tojimbay

Yes- they are trying to determine which treatment decisions are changed by having it. So if you have a BCR, for example, it may help you decide to have (1) no treatment if it detects distant metastases, or (2) treat pelvic lymph nodes if there are metastases only there, or (3) treat the prostate bed only if there are metastases only there.

jimbay profile image
jimbay in reply toTall_Allen

Thanks! One more question, you think they'll give it even if there is no evendence at this point of BCR (very low PCA)? Thus getting an even further confirmation that things are good?

Tall_Allen profile image
Tall_Allen in reply tojimbay

I doubt it. The purpose is to see if it changes the treatment plan. What is the point if there is no treatment decision?

jimbay profile image
jimbay in reply toTall_Allen

I agree and it looks like they wont take someone in my circumstances. I but I could argue if the current treatment decision was do nothing, and they found something, then it would have an effect.

Tall_Allen profile image
Tall_Allen in reply tojimbay

One can make up all sorts of improbable scenarios. People who suffer from Munchausen's Syndrome find all sorts of improbable things to test - odds are that sometimes they will be right.

jimbay profile image
jimbay in reply toTall_Allen

I LOVE that I'm doing so well that someone thinks my odds of BCR are so low that worring about it puts me in a category of mental illness like Munchausen's Syndrome. I'm excited to think that this is the most likly scenario.

Schwah profile image
Schwah

Why do you say it’s better TA? You are usually very careful not to write any conclusions without applicable studies. Dr Czernin who runs the UCLA program disagrees with that and I see no study that shows that.

Either way I assume that nothing has changed that would allow me to pay for their scan since Last time I checked, my lack of prior prostatectomy or radiation make me not fit their protocol.

Schwah

Tall_Allen profile image
Tall_Allen in reply toSchwah

It is better because the data so far show it is better:

pcnrv.blogspot.com/2016/12/...

There are good reasons for this that the clinical data bear out.

Schwah profile image
Schwah in reply toTall_Allen

Thx. Do you have their scheduling number. I’m going to try again to get in. Thx

Schwah

Tall_Allen profile image
Tall_Allen in reply toSchwah

I only have the contact info on the clinical trial info.

MateoBeach profile image
MateoBeach in reply toSchwah

Please pass on to me the contact info for scheduling when you find it please.

Schwah profile image
Schwah in reply toMateoBeach

The only one I have done is Ucla. Your doctor need to send them a prescription and then they will contact you to schedule. The cost is about $2800.

Schwah

MateoBeach profile image
MateoBeach in reply toSchwah

Thanks Schwah, I had that one 7 months ago. This one, free for veterans, is more sensitive. The contact person is Alex Alas 310.478.3711 x41399.

Tall_Allen profile image
Tall_Allen in reply toMateoBeach

Not a good idea to post phone numbers or private emails publicly.

MateoBeach profile image
MateoBeach in reply toTall_Allen

Noted. Thx

GreenStreet profile image
GreenStreet in reply toTall_Allen

Allen is it better at lower PSA for lymph nodes than combinex MRI at Nimwegen? Thanks

GreenStreet

Tall_Allen profile image
Tall_Allen in reply toGreenStreet

No, the ombidex is more sensitive.

GreenStreet profile image
GreenStreet in reply toTall_Allen

Thanks for info. Appreciated

JPnSD profile image
JPnSD

Thank you...not a veteran...but passed info on to the San Diego Informed PC Support Group. Much appreciated.

garyi profile image
garyi

Thanks, Allen. I wonder if the National Cancer Institute in Bethesda, would participate or contribute to the same study.

Tall_Allen profile image
Tall_Allen in reply togaryi

It's not exactly the same study- the primary endpoints are different, but you're right that they both use the same PET indicator (DCFPyL).

Thanks for posting, TA. We DO appreciate your help. I left the other site and came here since you Left.

Grumpyswife profile image
Grumpyswife

We have been waiting to get into NCI but nothing so far due to Covid19 taking all the resources.

VN6465 profile image
VN6465

Can you take this scan if previous IMRT and on Lupron?

Tall_Allen profile image
Tall_Allen in reply toVN6465

IMRT is OK. There may be no point if your PSA is very low, since there is no treatment plan.

VN6465 profile image
VN6465 in reply toTall_Allen

Had very aggressive PCa bbut was not successful in getting the PSMA scam at UCF prior to treatment

Tall_Allen profile image
Tall_Allen in reply toVN6465

UCSF is working with UCLA on this study - try them again.

MateoBeach profile image
MateoBeach

Thanks T_A. I’m on it as I’m on hold from going to Australia for 177Lu-PSMA with Veyonda (compassionate use outside of LuPIN trial.) This may let me see if it is still worthwhile to pursue. Semper Fi.

AlanLawrenson profile image
AlanLawrenson in reply toMateoBeach

As an aside, Veyonda is the subject of a FDA IND application as an antiviral against COVID 19. Are you likely to be treated at St Vincent's in Sydney?

j-o-h-n profile image
j-o-h-n

Well finally getting a detail that I would happy to volunteer for... not like the ones where they volunteered me.....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 05/15/2020 7:25 PM DST

mperloe profile image
mperloe

Columbia is running a PyL study with liquid biopsy. PSA must be over 2.0. I plan to travel for the UCLA Ga68 PSMA trial for those intermediate or above to identify oligometastasis.

Tall_Allen profile image
Tall_Allen in reply tomperloe

But you've already had treatment, right? Have they told you they will accept you?

mperloe profile image
mperloe in reply toTall_Allen

I have been approved at UCLA, The Columbia study requires a PSA >2ng/dl.

Tall_Allen profile image
Tall_Allen in reply tomperloe

Great! Let us know how it goes.

Fuzzman77 profile image
Fuzzman77

I am not a vet but have plenty of family members that are. Nice that this is being offered to those that have or are serving now. Better diagnostics one would think lead to better results.

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