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Update 1-29-15 of the 18F-DCFBC PET/CT trial at the NIH/NCI

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Posted 1/29/2015 6:33 PM (GMT 0)
I am back home in Florida (thankfully) after being at the NIH in Bethesda this last Sunday through Tuesday.

I completed both 18F-DCFBC scan and the F18 Sodium Fluoride Bone Scan. I am due to have the same two scans again, as part of the trial, in the 4 to 6 month time frame.

/clinicaltrials.gov/ct2/show/NCT02190279

I should receive a disc today or tomorrow from NIH that contains both of the scans. I plan to deliver them my Onco's office on Monday. He is having his radiologist compare these scans to the ones that they have done at MDA as well as the C11 scan I had done in LA.

I am meeting with my Onco on the 13th. The scans will have all been read and compared. I am pretty confident based on the reading of the last scans and the continued drop in PSA, that things are regressing or resolving and that nothing new will show up.

If all of this comes to pass, I will NOT be backing up to the Lupron needle on the 13th. I mean it will be Friday the 13th anway.

There has been much said, written and studied recently about Intermittent versus Continuous HT, and there is no real agreement on the efficacy of one over the other.

If I take this route, I will do PSA tests every 30 days and schedule the follow up scans at the NIH. Additionally, I will have the scans that are done at MDA repeated in the allowable insurance time frame.

All of this will allow me to make continued decisions in a timely manner and with all of the information I need. I am not being foolish, nor do I want to shorten life expectancy; I just want to do this while maintaining as high as I can Quality of Life.

Rising PSA numbers don't scare me into knee-jerk reaction. I need to see evidence of activity via scans and have targets to shoot at. Remember I am the guy whose PSA went from .67 at SRT to 92.5 four years later, before a cancerous node showed up and I took the first HT shot.

This is not a path I recommend for everyone. It is my path for this journey and one that I am comfortable with. Not everyone is cut out to see numbers this high without taking a long walk off a short pier. But for whatever it is, this path works for me.

"Every Day is A Bonus" and I am still out there choking the life out of them.

Sonny

Post Edited (Sonny3) : 1/30/2015 2:45:23 PM (GMT-7)

Posted 1/29/2015 6:41 PM (GMT 0)
Oh Hell!! I forgot to tell you;

My last PSA here at MDA in Orlando was 8.2 a couple of weeks ago AND on Monday the NIH has me at 7.02.

Yeah, I know different labs and methods and all that, but I'll take these numbers and run, celebrating all the way.......

Sonny
Posted 1/29/2015 7:33 PM (GMT 0)
Congrats on the PSA Sonny and I am glad that you are in this study. And yes, you are right about choosing our own path in the PCa journey. Educate yourself and then make a choice, and don't look back, only look ahead.
Michael
Posted 1/30/2015 12:51 AM (GMT 0)
Michael, thanks.

I have been doing my own best advocate work now for almost 6 years. Most of what I have been able to do would not have been possible without the support and knowledge of the folks here on HW. I don't see any reason to change now.

Sonny
Posted 1/30/2015 12:53 AM (GMT 0)
Best of luck Sonny. Enjoy the Florida sun. I've got 2 feet of snow on the ground and freezing weather outside.BB
Posted 1/30/2015 1:37 AM (GMT 0)
Sonny,

I called and they said they could take me possibly...how many times did you have to go there? Just one day for the scans?

Thanks,
Jerry
Posted 1/30/2015 3:08 AM (GMT 0)
Thanks BB.

Jerry, I flew in on Sunday evening. Monday am I had blood work and then the DCFBC scan. Tuesday I had the F18 scan and then left for the airport. Spent two nights there. I think it would be hard to do both scans in one day.

Whether you go back a second time depends on the arm of the trial you get into. I am in Arm 3 and I have the same two scans repeated at 4-6 months. Arm 3 is the only one that has both scans. Arm two has just the DCFBC scan and it is only administered one time.

Sonny
Posted 1/30/2015 1:48 PM (GMT 0)
Sonny -

COngrats of ever improiving metrics and having the best scans to prove it.

I agree with you the IHT is preferable to continuous even if there are no metrics/studies to prove it.

Hope to follow in your footsteps on IHT on Memorial Day if my PSA remains undetectible. Phasing down from 4-month Lupron since 3-28-13 to 3-month in Dec 2014 to one month Lupron in March and April, 2015 on assumption the one month Lupron will have a shorter half life.

LupronJIm
Posted 1/30/2015 6:10 PM (GMT 0)
Take the lower number - where ever it comes from.

Here's hoping you can skip that next shot.

Keep living life,
Andrew
Posted 1/30/2015 9:52 PM (GMT 0)
1-30-15, today I received the disc with copies of the two scans on it. I am taking it to my Onco on Monday.

Also included was a written impression results from the radiologist on the F18 Bone Scan. They compared it to an F18 scan I had done at NIH in October 2012, as part of another diagnostic clinical trial.

The results were no differences and still no sign of mets to the bones. YEEHAW, celebrating that one tonight for sure.

Sherry and I have planned (in no particular order) adult beverages, roaring fire in the outdoor fire pit, time in the hot tub and/or time in the heated pool, grilled rib eye steaks with all of the trimmings and anything else we can think of to celebrate.

Sonny (still choking the life out of ever day)
Posted 1/30/2015 9:56 PM (GMT 0)
That is such good news. Congratulations.
Posted 1/31/2015 1:41 AM (GMT 0)
You're a good man, Sonny. It's great to hear that those numbers are going down and you're still living the good life. Keep wringing every bit of life out of every day.
Posted 1/31/2015 2:35 AM (GMT 0)
A lower PSA is always good Sonny.

We must always choose our path, whatever it is. Sounds like you have a plan, good luck with it.

High of 77 today down here in So. Florida, going to low 80's Monday. Glad you are back home. I passed by your exit off I-95 today coming back from Jacksonville!

Bill from Florida cool
Posted 1/31/2015 8:02 AM (GMT 0)
Great report Sonny.

I think its important that you are doing this your way, and the path you are on is right for you.

I am a big believer in this, to me (and no one else has to agree) quality of life trumps quantity every time, it's how I am trying to get through my journey and my additional troubles. I don't expect anyone else to either imitate, follow, or even agree.

I hope you have continued good luck down your path. You certainly get an A Plus on doing your homework.

David
Posted 1/31/2015 1:27 PM (GMT 0)
I totally agree with every word you wrote David. Make your decision, own it and move on! Reduces a lot of stress, for me anyways. I call it the pragmatic approach.

Cheers, Doug
Posted 1/31/2015 1:44 PM (GMT 0)
Sonny,
Congratulations and best wishes as you move forward.

I really enjoy reading about your PCa thought process. Very insightful .... thanks for posting.
Posted 1/31/2015 3:08 PM (GMT 0)
Shaba, for good or for bad, being pragmatic has been the mantra of my adult life, has gotten me this far with all I have dealt with, beats the alternative of needless worry and anxiety
Posted 1/31/2015 4:57 PM (GMT 0)
Looks like we are pretty much alike Buddy! Any military background? That's where my approach stems from, I'm sure.

Cheers, Doug
Posted 2/1/2015 2:22 AM (GMT 0)
Shaba, just like Bro. Sonny here, both are Viet-Nam war vets, U.S. Navy. My father was a 30 year lifer in the Navy, too.
Posted 2/1/2015 3:25 AM (GMT 0)
Doesn't surprise me in the least! Air Force for 30 years. Not a good idea to be unrealistic, world of hurt real soon!

Cheers, Doug
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