What We're Not Supposed to Know

[COG1]

Randy has now been in a clinical trial for 133 weeks. Yesterday was his quarterly check up at Emory. (The President was in Atlanta yesterday....can I tell you what that did to the traffic situation?) We went, as usual, to the upon arrival. As always, they took two sets of blood samples. One is for use by the docs at Emory and one is sent to the trial sponsor. Since this is a double-blind study, we nor the doctors know the results of the PSA test. The only exception to that have been when Randy's PSA reached undetectable the first time, we knew because treatment was discontinued, and when his PSA subsequently rose to 2.0, treatment was restarted. The protocol only allows for one "break" in treatment, so since he restarted we have been completely in the dark.

Yesterday, we went in to see the doctor and all went well. Usually the blood work results are in hand when the doctor comes into the room. Yesterday, they weren't, so we waited around for the results. After a while, our clinical trial rep came into the room with the results in hand. The first words out of her mouth were: "This is going to be an awkward conversation". (Queue the clenched stomach) But as it turns out, the news was good news. It seems that someone in the lab made a error and processed the samples for PSA. Medical ethics, we were told, require that we be informed of any test results that our doctors have access to, so for the first time in a long, long time, we know Randy's PSA. Drum-roll, please....0.01.

This is such a relief. Previously, I found a reference on his scan report that showed his diagnosis as "Prostate Cancer with Rising PSA". Although the PA assured us that the pathologists had no idea about his PSA, I was afraid that Randy was becoming castrate resistant. It turns out he's not. Yesterday was a good day (traffic not withstanding). Sometimes it's a good thing to know what you're not supposed to know. Now we're just hoping the person in the lab who dropped this particular ball doesn't get into too much trouble.

[Hidden]

.01. Oh yah ! ... what a thing to wish for another man . May he be castrated as I am for many years ... what a gig? Now while we’re kicking this can down the road, let us not forget to take time and smell any roses along the way . Thanks for the great news. Take a day off and party .. 133 weeks 👏

[Shooter1 in reply to Hidden]

Right on LULU. sounds like he is on the right side of the trial....Keep up the down numbers.

[Hidden in reply to Shooter1]

You too Shooter1..

[softwaremom00]

Congrats on the good news! Enjoy the day! I bet it is sunny and beautiful in Georgia this time of year. A great time to enjoy the flowers!

[CantChoose]

That's fantastic! What's the trial?

[COG1 in reply to CantChoose]

It's the EMBARK Trial. Earlier use of Lupron and Enzalutamide for Hormone Sensitive non-metastatic PCa.

[Magnus1964]

This is the first time I have ever heard of withholding test results from a patient in a trial. How can you make an informed decision to stay on the trial. That aside your news in fantastic.

[whatsinaname in reply to Magnus1964]

I just cannot believe that a prostate cancer patient would not know his PSA for a long, long, long, long time. Here in Bombay, if I want to know what my PSA is, I telephone the pathological people and they arrange to take a blood test at my house in a couple of hours. The results are then e-mailed to me a few hours later. All this takes a maximum of 6 hours and costs TEN US $, including the house visit. No doctor's permission is required. Of course, no insurance is involved (no trials either) and I pay the ten bucks myself. Cheers !!

[COG1 in reply to whatsinaname]

If Randy weren't involved in this trial, we, of course, would know. I'm not really sure why the PSA is blinded, but it is part of the trial protocol. I'm sure that whoever designed the trial had reasons.

[NWLiving in reply to whatsinaname]

Wow!

[COG1 in reply to Magnus1964]

It's part of the protocol. We agreed to it going in. If the treatment stops working, they are ethically bound to un-blind so that we can move on to a different treatment. It's un-nerving sometimes, and I'm a very control oriented person, so it's been difficult. But if nobody participates, then no new treatments will be available.

[jimreilly]

congrats on the good report! and yes, I know what DT did to your traffic situation, the same thing he did to ours when he was in the Twin Cities recently (he came despite the fact that I certainly didn't invite him)

[COG1 in reply to jimreilly]

LOL! Yeah...we didn't invite him either.

[leo2634]

Send the Tech. That dropped the ball a thank you note. Great news now go out and enjoy the weekend. Never give up never surrender. Leo

[COG1 in reply to leo2634]

Thank you. I don't know who it was, or I certainly would. I did call our clinical trial coordinator to make sure he/she wouldn't get into too much trouble. She assured me that they would bring it up with them, but at the end of the day, the tech would still have their job.

[j-o-h-n]

I bet nothing will happen to that person in the lab cause he's just a "COG in the wheel" in the organization.

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 04/26/2019 6:47 PM DST

[monte1111]

Such great news. Enjoy.

[Zxpl]

Oh how I love a happy text! In our warriors’ world they are heavenly to read. Congrats❣️