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My PYLARIFY PET Scan was approved today

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Posted 2/24/2022 7:50 PM (GMT 0)
My PYLARIFY PET Scan was approved today, I had to call my insurance company at noon to find out the scan was approved. The scan is set for March 2nd at Tulane. My results are scheduled to be given to me by Dr. Sartor the following week on March 8. Dr. Sartor has been great to listen to me and tell me what is going on with this stuff. He sends me texts to keep me informed!

I am a G-9r, pT3bNO, with SVI and close margins - RP (Oct 2015) and 8 weeks radiation ( started Feb 2016). Dr. Sartor ordered the PYLARIFY PET scan Feb 7 when the PSA came in at .72.

I am taking this one step at a time and really appreciate the knowledge I have learned from this forum. Right now I am happy,
Posted 2/24/2022 8:06 PM (GMT 0)
Glad to read about the approval. I hope that the PET scan will clarify what is going on and help to define future treatment.
Posted 2/24/2022 8:10 PM (GMT 0)
Yahoo, must be like waiting for your first PSA test now….
Posted 2/24/2022 8:19 PM (GMT 0)
Excellent, ntzguy! I think your PSA is right at the sweet spot between low enough to get an early heads up on lesion location and high enough to meet the test's sensitivity.

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A question for Forum Brothers who have had any kind of PSMA-PET test recently: Is a pre-test done to learn if you are one of the 5 to 10% of men who don't produce PSMA, or do you only find that out after you have had the test? I asked this question a while back and I think the answer was no pre-test, at least then.

Djin
Posted 2/24/2022 9:51 PM (GMT 0)
Congratulations! I am in the middle of SBRT for oligometastatic treatment of mets found via my PSMA Pet scan. My insurance company denied the SBRT four times but my RO continued to appeal until the insurance company finally approved. My whole family and coworkers were literally dancing when I told them it was finally approved. We get these great advances for identification and treatment of PCa and then to have the insurance company say they aren't going to let you take advantage of advances is a horrible feeling. Good luck with the scan.

Overlapping with your posts in another thread, aside from SBRT to the four mets, the plan is for to me to stay on ADT for 12-18 months, stop it, and then see what happens. My RO told me today that he expects that I'll have years of treatment-free/ADT-free undetectable/ned again following this and that if PSA does rise again later, we'll do another PSMA scan and again zap anything found.

Djin - I had no pre-test before the PSMA scan. Doctors did want to wait until psa reached 0.50 but once it was at 0.43 and clearly looked like it would get to 0.50 soon, the test was ordered.

Post Edited (schoolpsych) : 2/24/2022 3:12:15 PM (GMT-7)

Posted 2/24/2022 9:56 PM (GMT 0)

DjinTonic said...
Excellent, ntzguy! I think your PSA is right at the sweet spot between low enough to get an early heads up on lesion location and high enough to meet the test's sensitivity.

------------------------------------------------------
A question for Forum Brothers who have had any kind of PSMA-PET test recently: Is a pre-test done to learn if you are one of the 5 to 10% of men who don't produce PSMA, or do you only find that out after you have had the test? I asked this question a while back and I think the answer was no pre-test, at least then.

Djin

I did not discuss low PSA with Dr. Sartor, but did have a conversation in the past several times with my URO's and were told several times a PSA test is the only test for the cancer after RP and radiation. There was a top poster on this site that used to say the same thing about test for prostate cancer. My initial PSA was like 5.7 and after BCR, my PSA stayed at .2 for 10 months. So I guess I will find out about low G9 with low PSA on March 8.

BTW, Dr. Sartor is of the opinion that PSA needs to be at .5 for optimum results

Post Edited (ntzguy) : 2/24/2022 3:03:43 PM (GMT-7)

Posted 2/25/2022 8:47 AM (GMT 0)
Congratulations on the scan approval, ntzguy. I hope it answers some questions for you.

Djin: my husband had a PYLARIFY scan in January. To our knowledge, they did not do any kind of pre-test to determine whether he produces PSMA.
Posted 3/2/2022 11:45 PM (GMT 0)
My PYLARIFY PET Scan was done today, and they gave me a DVD disk. I assume the radiologist will get the results and interpret same before I meet with Dr. Sartor next Tuesday, March 8.

I wonder if the DVD will pay on my DVD player? So now it is the waiting game.
Posted 3/3/2022 12:03 AM (GMT 0)
If you are really interested and have a Mac, try this software, "OsiriX Lite is the complete demo version of OsiriX MD"

https://www.osirix-viewer.com/osirix/osirix-md/download-osirix-lite/

I use it for lots of our imaging and it works well for free with some limitations. The data on the DVD is pretty useless without viewer software which may also be on the CD if you check. Try it on your computer and see what happens.
Posted 3/3/2022 5:10 PM (GMT 0)
Be very careful to ascertain the experience level of the PYLARIFY PET Scan radiologists interpreting the results of your images. They are not an easy read, and as new as most facilities are with them, caution should be exercised both with radiologists and with uncologists, as they progress through the learning curve.

From a clinical trial scan I had in 2017, at the NCI in Bethesda, a chest based Sarcoma tumor was ignored, because they were focused on PCa mets. The DDLPS tumor is now football sized and inoperable.

Be your own best advocates, my brothers'.
Posted 3/3/2022 6:54 PM (GMT 0)
I recently had a CT scan. They sent me home with a disk and said “that is not for you to watch. Give it to your primary care doctor for your records. The radiologist report will be sent to the doctor that ordered the scan. If you want a copy of the report, ask the ordering doctor”.

As difficult as these are for the experts I see no reason to try to watch them ourselves.
Posted 3/3/2022 8:27 PM (GMT 0)
I had a brain scan recently and they gave me a disc. I looked at it on my computer and expertly saw no sign of intelligent life.
Posted 3/3/2022 10:49 PM (GMT 0)

GoBucks said...
I had a brain scan recently and they gave me a disc. I looked at it on my computer and expertly saw no sign of intelligent life.

"no sign of intelligent life" - to funny. Back in December I had a shoulder x-ray and they put the x-ray on a disk for me to take to a Orthopedic or my regular Dr. I gave it to my regular Dr. and he said they did not have the hardware to read the disk, so I just kept the disk.

My MO is Dr. Alton Sartor, right now I think he is the best for me and I have no reason to doubt him. Depending on the findings of the scan and next steps, I may just get a primary care Dr. down here in Biloxi where I plan on retiring.
Posted 3/3/2022 11:37 PM (GMT 0)
You are with one of the very best prostate cancer medical oncologists in the world. Follow his lead.
Posted 3/8/2022 11:04 PM (GMT 0)
Got my Pet Scan results today. 2 lymph nodes showed hot

1. 0.9 x.0.7 cm left internal iliac lymph node with max SUV of 6.5
2. 0.8 x 0.5 cm left common iliac lymph node with max SUV of 16.6

Both are located in the pelvic region. He said any lymph node SUV above 3 is not normal.

In my meeting with Dr. Sartor, he had me referred to a Radiation Oncologist in less than 3 minutes, with an appointment to see her. My appointment with Dr. Kendra Harris, Radiation Oncologist, is tomorrow morning at 8:30 am to discuss what she thinks is needed and then Dr. Sartor will join us to hopefully finalize the radiation treatment.

Talk about communication and coordination - I was impressed with Dr. Sartor the first time I met him. Now I am amazed at his abilities.
Posted 3/18/2022 1:11 PM (GMT 0)
Update

3/9/2022 Met with Dr. Kendra Harris and Dr. Sartor. Dr. Harris said Radiation is a go, she requested the technical information on my prior RT treatments to the prostate bed, to map out her treatment. Dr. Sartor said I would have to take 1 - 6-month Eligard shot, along with Abiraterone and Prednisone. Dr. Sartor said the prednisone would be gradually tapered off over the course of the treatment. He said the 6-month Eligard shot would be for just one time and will likely take two months after that to wear off. Dr. Sartor said my Testosterone level should recover from the Eligard/ADT treatment (currently in the high 400’s)

3/17/2022, Long drive to Tulane for the Eligard shot, my mind was telling me I did not want to go through with the shot. I was planning all sorts of things to tell Dr. Sartor to talk my way out of the shot. I was called from the Cancer Center waiting room by a nurse who led me to the exam room. She was toting the Eligard box and proceed to tell me about the way she was going to give me the shot. So just like that, I got the shot and had no one to whine too. Had all sorts of issues with my RX drug provider on the Abiraterone and Prednisone and did not have both in hand until after 3 pm. So this morning I took 4 large Abiraterone pills and one Prednisone pill.

Next steps – April 4 off to Quest for Comprehensive Metabolic blood workup, PSA and Testosterone draw. The next day I go back to Tulane for RT simulation.

Then around April 18th, I will start XRT that will last 5 to 7 weeks, 5 days a week. Then we will see what all these treatments can accomplish.
Posted 3/18/2022 1:38 PM (GMT 0)
Congratulations!!!
Posted 3/18/2022 1:42 PM (GMT 0)
Ntzg,
You're a man with plan, and you've got it going. 🙂

I was scared ******** when I got my first ADT shot and kept thinking of ways to get out of it. Though ADT is bad enough, it hasn't been as bad as I thought it might be.

Settle into your RT routine and it will go by soon enough.

Thanks for the update and good luck!
Posted 3/18/2022 1:58 PM (GMT 0)
Hello, NTZGUY ---

You've got a comprehensive plan in place, beyond all words!

Dr. Sartor is renowned in this field, and I can tell you are getting a PROACTIVE PLAN in place!

Many of us here have experiences with ZYTIGA --- now available in the generic version known as ABIRATERONE ACETATE.

I just bumped up the collective thread we have put together here --- look for it today on your screen on this website. It's entitled:

ZYTIGA: Our Collective Experiences

Read through it, and you will glean some helpful tips, as you start this medication.

I have been on ZYTIGA (Abiraterone Acetate) for over six years now. It has paid them dividends, and helped me immensely.

Thankful you have a great treatment plan in place --- a multi-tiered approach!

Check out the ZYTIGA thread, just now boosted to the top. You will find it insightful and helpful!

Handshake, fellowship, camaraderie ~

CYCLONE - # Iowa State University
Posted 4/6/2022 1:57 PM (GMT 0)
4/6/2022 Progress Report – This is my second go at Radiation Treatments to deal with G9.

Monday 4/4 Quest blood drawn

Tuesday 4/5 Tulane Cancer Center for CT Simulation
IV set into arm for CT and MRI contrast.
Lay on the CT bed and body mold made
Contrast used

3 tiny dots tattooed, one center at bottom of rib cage, one each on both sides of rib cage. Last time I had
radiation, other facility only marked 2 + on side of hips that wore off during process and had to be
re-inked, they are long gone.

Appointment(s) made for RT, start April 19. Scheduled to have 35 rounds, will take a little over 7 weeks to complete.

MRI - Man this was a loud process
One long session without contrast
Second session with contrast

4/6/2022 Quest Lab results
COMPREHENSIVE METABOLIC PANEL – to check liver (Abiraterone Acetate)
All good except
BILIRUBIN, TOTAL 1.5 H R Reference Range: 0.2-1.2 mg/dL
AST 36 H Reference Range: 10-35 U/L

TESTOSTERONE, <10 L – I guess this means undetectable?

PSA now at 0.12, PSA 3/8/2022 was 1.07

So far ADT (Eligard and Abiraterone Acetate) has not been to bad, today my energy level is really low.

Next Step – Start RT on April 19, follow up blood work and Office visits with Dr. Sartor and Dr. Harris. Keep the faith guys I am making progress, you can to.
Posted 4/6/2022 2:44 PM (GMT 0)

ntzguy said...
Update

......So just like that, I got the shot and had no one to whine too.

That's what we're here to listen for. ;-)
Posted 4/6/2022 6:17 PM (GMT 0)
Sounds like you're making great progress!

I find it very interesting that you had radiation to that area before and that they can do it again. Or did I misunderstand? If so, this gives me hope that that increases my husband's treatment options should his cancer recur.
Posted 4/6/2022 8:03 PM (GMT 0)
Melanie

First time was to prostate bed only, this time whole pelvic region, 2 hot nodes, and avoid first area zapped. They had to get the records from 6.5 years ago to map around prostate bed zapped last time. They said can't zap same area 2x.
Posted 4/6/2022 8:55 PM (GMT 0)
Well you have been through it once before, hopefully this next RA treatment will do the trick. My best to you.
Jack
Posted 4/6/2022 9:13 PM (GMT 0)
Melanie,

I had whole pelvis radiation the first time around in 2017. I was found to have cancer again in pelvic lymph nodes so in the area already covered in the whole pelvis radiation. I assumed this was really bad news because they couldn't be treated as I already had radiation in the area. I was happily surprised to have my RO inform me that this wasn't a problem. He said that they are able to so focus and control the SBRT now that the prior radiation isn't a problem. So far so good for me.
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