PSMA Scan at NIH Day 1 of 2

[Moespy]

I was fortunate enough to get into the Clinical Trial for the F18 DCFPyL PSMA Pet Scan at NIH. I have had no prior ADT or Chemo ever and my PSA was 0.7 which met the qualification for the trial. (RP in 2011, IMRT in 2015, BCR 02/2018).

Today was day 1 of 2 with the actual PSMA Pet Scan tomorrow. This morning they took blood and gave me an MRI with Endorectal Coil (not fun) and gave me the results at noon.

The MRI was clear showing no involvement in lymph nodes, bone or soft tissue. My CT and Bone scans at Hopkins last month were also clear.

Here is the weird part... Two weeks ago at my regular 6 week blood test my PSA went down to 0.4 from 0.7 and I was shocked to see this but figured it was some sort of anomaly. The NIH lab verified that drop today with a reading of 0.38.

Has anyone else had a PSA drop after a steady upward trend for apparently no reason and without assistance of ADT, hormones, chemo or other medicine?

Jim

[NPfisherman]

Let me begin by thanking you for participating in a clinical trial...glad you had good news...when my PSA drops, I do the happy dance....best of luck to you...

[kmack57]

Congratulations, sounds like great results!

[dac500]

I participated in the same clinical study at NIH on October 22 and 23. In my case, I had brachytherapy for Gleason 3 + 3 cancer in 2011. Then I had a recurrence in an extra-capsular mass in 2016 that was treated with cyberknife and ADT with last Lupron shot in April 2017. My PSA remained undetectable for about a year and then started rising quite rapidly, 0.2 in April and 1.8 in October. The MRI I had at NIH was clean. But my PSA was 3.32. The F18 DCFPyL PSMA Pet Scan found about 10 pelvic lymph nodes with intense signal. Then I had a biopsy of one of the lymph nodes on November 9. The biopsy confirmed metastatic prostate cancer. Now I am under treatment at Penn Medicine with Casodex and Lupron. Just before the start of this treatment, my PSA was 4.48.

In your case, PSA seems to have leveled off. I hope the outcome of your PET scan would be better than mine. Please keep us informed.

[Moespy in reply to dac500]

Great reply! Thanks very much and I will update with Part 2 of this post when I receive the results of the Pet Scan.

In your case would SBRT Radiation to the Lymph Nodes be an option?

[dac500 in reply to Moespy]

I had radiation twice. The cancer could now be radiation-resistant. Some of the lymph nodes are very close to a major artery. Moreover, there could be metastatic cancer elsewhere too small to be detected at this time. I had a meeting with a panel of MO, RO, and Uro

[Moespy in reply to dac500]

Thanks very much for the reply. I wish you the best and will report back my results from the scan next week when received.

[Geoff22]

Most of us with prostate cancer are obsessed with PSA values. My self included. But I think we make too much of small changes. There are many reasons for small changes in our PSA, including inflammation, test accuracy, body rythyms etc. We are better served by ignoring numbers to the right of the decimal point. Better to focus on the absolute value of the change rather than the percentage of change. So in your case the change was 0.3 which can be famously described as picking the fly shit out of the pepper. Look at the big picture over time. I had some salvage cryotherapy last year. My PSA drifted down from 1 to less than one to undetectable over a period of 8 months. I was elated! 3 months later it was 6.7. I am more skeptical now about the meaning of any single test positive or negative. This disease does not follow a straight line.

[j-o-h-n in reply to Geoff22]

Best way to pick fly shit out of pepper is simple: Fly shit doesn't make you sneeze..

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 12/21/2018 5:31 PM EST

[monte1111]

Best of luck to you. Don't know exactly what Endorectal Coil is but know I don't want it.

[j-o-h-n in reply to monte1111]

I've had two... first one not bad.... second one was a killer...

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 12/21/2018 5:29 PM EST

[monte1111 in reply to j-o-h-n]

Very cryptic sir. Are you referring to very large scary looking probes, or ex-wives?

[j-o-h-n in reply to monte1111]

Me <===<<< laughing. Actually the first one was a probe up the ass the second one was my ex-wife (what a pain in ass).

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 12/21/2018 9:15 PM EST

[j-o-h-n in reply to monte1111]

I was laughing so hard that I screwed up my post (thanks). Now for the real story. What they do is lay you down put an inflatable probe up your butt, pump it up and place you in an MRI for 30 minutes without contrast and then slide you out of the MRI then inject you with contrast and then shove you in again for another 15 minutes. First time was uncomfortable.

Years later my new oncologist sent me for another one, which was after my radiation (not right after). This time when they inserted the probe is was like sticking a hot poker up my butt (now don't ask me how I knew that it felt like a hot poker since I never had a hot poker up there before) which I had to suffer through for 30 minutes. Under my breath I said every four five six or seven letter curse word I know over and over again. When it came time to inject me with the contrast for my last 15 minutes of torture, I said to the doctor, "this is killing me". He acted surprised and asked me if "I wanted to stop"? I told him "no way" because if I stopped I figured that I would have to go through this again at a later date. So I continued for the next 15 minutes and when finished I put my finger in my mouth and did a popping sound as if the doctor opened a bottle of champagne. To celebrate!

Now here's the real whopper, when I mentioned what I went through to my Oncologist he said "why did I send you for that test again"." Then I did what every red blooded American male would do "I killed him". End of story...aren't you glad?

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 12/21/2018 10:19 PM EST

[monte1111 in reply to j-o-h-n]

So it seems like the good doctors are touring Spanish Inquisition museums, picking things up, saying I wonder what this is, has to be good for something.

[CalBear74]

Have you introduced any new foods into your diet, such as fruit juices: açai berry juice, V-8 juice, or perhaps pomegranate juice?

[Moespy]

For the past 2 years I take a laundry list of supplements. I recently increased IP6, Nattokinase and Quercitin. Hard to believe that change could have such a dramatic decrease in PSA (45% lower). I really don't want to point the change in that direction since I have not seen this kind of result previously. Thanks for your reply! Jim