Open main menu ☰
HealingWell
Search Close Search
Health Conditions
Allergies Alzheimer's Disease Anxiety & Panic Disorders Arthritis Breast Cancer Chronic Illness Crohn's Disease Depression Diabetes
Fibromyalgia GERD & Acid Reflux Irritable Bowel Syndrome Lupus Lyme Disease Migraine Headache Multiple Sclerosis Prostate Cancer Ulcerative Colitis

View Conditions A to Z »
Support Forums
Anxiety & Panic Disorders Bipolar Disorder Breast Cancer Chronic Pain Crohn's Disease Depression Diabetes Fibromyalgia GERD & Acid Reflux
Hepatitis Irritable Bowel Syndrome Lupus Lyme Disease Multiple Sclerosis Ostomies Prostate Cancer Rheumatoid Arthritis Ulcerative Colitis

View Forums A to Z »
Log In
Join Us
Close main menu ×
  • Home
  • Health Conditions
    • All Conditions
    • Allergies
    • Alzheimer's Disease
    • Anxiety & Panic Disorders
    • Arthritis
    • Breast Cancer
    • Chronic Illness
    • Crohn's Disease
    • Depression
    • Diabetes
    • Fibromyalgia
    • GERD & Acid Reflux
    • Irritable Bowel Syndrome
    • Lupus
    • Lyme Disease
    • Migraine Headache
    • Multiple Sclerosis
    • Prostate Cancer
    • Ulcerative Colitis
  • Support Forums
    • All Forums
    • Anxiety & Panic Disorders
    • Bipolar Disorder
    • Breast Cancer
    • Chronic Pain
    • Crohn's Disease
    • Depression
    • Diabetes
    • Fibromyalgia
    • GERD & Acid Reflux
    • Hepatitis
    • Irritable Bowel Syndrome
    • Lupus
    • Lyme Disease
    • Multiple Sclerosis
    • Ostomies
    • Prostate Cancer
    • Rheumatoid Arthritis
    • Ulcerative Colitis
  • Log In
  • Join Us
Join Us
☰
Forum Home| Forum Rules| Moderators| Active Topics| Help| Log In

Pilot Study 14-C-0140, A Pilot Study of 18F-DCFBC PET/CT in Prostate Cancer--I got into the study

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
profile picture
Sonny3
Veteran Member
Joined : Aug 2009
Posts : 2464
Posted 10/20/2014 9:38 AM (GMT -8)
I just got off the phone with the NIH. I qualify for the study and will be receiving the scans. In addition, because I qualify for Group 3 of the study I will be receiving an F18 Sodium Fluoride PET scan of the bones.

They anticipate that I will be receiving the scans in December because of their schedule in getting the contrast agent. This works for me as I see my Onco on November 14th, get a full blood workup and receive my next Lupron shot. A few days before the meeting I will also be having CT and PET scans here in Orlando.

I will have a bunch of comparison information by the time we finish with the NIH scans.

This arm of the study also calls for me to receive both scans again at 6 months.

I can't ask for much more information than that upon which to make my decisions going forward with treatment. The fact that I am on Lupron and will continue to be has no bearing on my acceptance into the trial.

I also received a call from my Onco's office confirming that they are setting an appointment for me with the local Dr. that administers the Provenge treatments here in Orlando.

WE ARE OUR OWN BEST ADVOCATES IN DEALING WITH THIS CRAP. You can't just sit around and wait for others to do stuff for you. Their wheels drag on to slow for me.

The information that all of us receive here at HW, from the folks that put in the time to find it, is invaluable. It is up to each of us to do something with that info when it fits into our scenario.

So thank each of you that continues to provide us with this info. Over the years you have certainly assisted me greatly in my journey.

The "Bonus Days" just keep rolling in. But sometimes you have to grab them or provide assistance to get them.

Sonny
profile picture
Tall Allen
Elite Member
Joined : Jul 2012
Posts : 10645
Posted 10/20/2014 10:11 AM (GMT -8)
Congratulations on getting into the study. DCFBC PET is one of the new generation of PET scans that certainly looks promising. You are helping a lot of other people by participating.

- Allen
profile picture
A Yooper
Veteran Member
Joined : Jul 2012
Posts : 2149
Posted 10/20/2014 10:42 AM (GMT -8)
Wow, great news Sonny! And as you said - "WE ARE OUR OWN BEST ADVOCATES IN DEALING WITH THIS CRAP. You can't just sit around and wait for others to do stuff for you. Their wheels drag on to slow for me."

Do we need the medical professionals - of course! Are they "god-like" and perfect - NO.

"LIKE" WE ARE OUR OWN BEST ADVOCATES

Continued best to you bro, please continue to keep us posted - not only 'cause we care about you, but as TA stated you are also helping so many others!
profile picture
60Michael
Veteran Member
Joined : Jan 2009
Posts : 2572
Posted 10/20/2014 11:10 AM (GMT -8)
Great to hear Sonny, and the old saying of " you can pray all you want, but you better keep moving your feet" seems appropriate for all of us.
Michael
profile picture
tatt2man
Veteran Member
Joined : Jan 2010
Posts : 2845
Posted 10/20/2014 11:48 AM (GMT -8)
Sonny
- congrats on getting into the study
- here's to the results you want - which benefit all of us !

Every day is a bonus especially if we are our own best advocates.

hugs,
Bronson
profile picture
wampuscats
Veteran Member
Joined : Nov 2011
Posts : 530
Posted 10/20/2014 1:57 PM (GMT -8)
Hi Sonny,

That's great news! We wouldn't have known to look into clinical trials at NIH without the knowledge you and Tall Allen imparted to us personally and here on Healing Well. Jim has had a great run on the Prostvac with Enzalutamide trial. He's been off Lupron for over 18 months now, with PSA as high as 3.5 then down to <.01 and the slow rise to 1.75 in Sept. (most likely over 2 now)

Lupron Jim got us to an imaging conference this summer and we found out about PMSA tracers and FACBC Scans and DCFBC scans. Jim asked his trial doc if NIH was doing any of these scans and he qualified.

But yup, Wise Words From Sonny...
"WE ARE OUR OWN BEST ADVOCATES IN DEALING WITH THIS CRAP. You can't just sit around and wait for others to do stuff for you. Their wheels drag on to slow for me"
Marie
profile picture
James C.
Veteran Member
Joined : Aug 2007
Posts : 4464
Posted 10/20/2014 2:07 PM (GMT -8)
Thanks for the update and good news, Sonny. Your continued pushing the boundaries for your treatment plans benefit us all.
profile picture
Purgatory
Elite Member
Joined : Oct 2008
Posts : 25448
Posted 10/20/2014 2:28 PM (GMT -8)
Congratulations, sounds like your hard work is paying off big time.
profile picture
Jerry L.
Veteran Member
Joined : Feb 2010
Posts : 3197
Posted 10/20/2014 3:01 PM (GMT -8)
Sonny,

Awesome that you got in...good for you.

You mentioned that you will also be getting a F18 Pet/CT as well.  You've had several of these types of scans in the past, correct?  (just had one myself last Wednesday)

You've also had the C11 scan as well?  Is radiation an option if these scans find anything?

All very interesting and informative...thanks for sharing.

Jerry

profile picture
Sonny3
Veteran Member
Joined : Aug 2009
Posts : 2464
Posted 10/20/2014 5:45 PM (GMT -8)
Thank you all for the encouragement. I just don't know any other way to deal with this stuff except to try and take charge, to a degree, of my own destiny.

Marie, what goes around comes around. I wouldn't have know about this scan study if it were not for you and Allen. Thanks.

Jerry, yes I have had a bunch of the F18 scans and the C11. I really don't know if anything that shows up will allow for any kind of radiation. So far the only thing that has been identified is the few nasty nodes that I am aware of. The area is too wide to radiate them. With all of the scans that I have had, nothing has ever shown up in the bones or organs. Now that might be a whole other kettle of fish.

What I am really trying to do is determine what is going on and how hard I have to hit it to get as much longevity as I can. I am always about living with QoL, but I don't have my head stuck in the sand either. I will back up to the biggest needles they have, to get whatever I need, to hang around for a while.

Sherry is too young and our marriage is too new for me to make her a widow of Pca for the second time.

Just doing what I can, to have all the information I can, to make the decisions to do what is necessary.

Sonny
profile picture
Jerry L.
Veteran Member
Joined : Feb 2010
Posts : 3197
Posted 10/20/2014 6:04 PM (GMT -8)
Sounds like a plan, Sonny. Good for you on researching and taking action.

Sorry for all the questions...I usually just get the f18 pet/ct scan. Curious, did the previous f18s ever show those spots you mention? Or just the c11? (Even though the f18 is for bone involvement, to some degree soft tissue can show as well.

Thanks
profile picture
Sonny3
Veteran Member
Joined : Aug 2009
Posts : 2464
Posted 10/21/2014 3:36 AM (GMT -8)
Jerry, the F18 scans did not find the node issue. They were initially found on a CT scan. The C11 scan found a couple that were not found on the CT.

Sonny
profile picture
Redwing57
Veteran Member
Joined : Apr 2013
Posts : 2821
Posted 10/21/2014 5:54 AM (GMT -8)

Sonny3 said...
So far the only thing that has been identified is the few nasty nodes that I am aware of. The area is too wide to radiate them. Sonny

You'll be swimming in images soon!

Is it not possible to target specific lymph nodes? My IGRT by IMRT worked on nodal areas at least, with something like a 7mm or 10mm margin (can't recall specifically). The 50.4 Gy I had to pelvic lymph nodes wasn't a wide field exposure of my entire abdomen. They located the nodes from the CT scan and shaped the treatment field to include all of them.

Jerry
✚ New Topic ✚ Reply


More On Prostate Cancer

Positive For Prostate Cancer

Positive For Prostate Cancer

7 Ways To Stay In Control And Reduce Stress While Battling Cancer

7 Ways To Stay In Control And Reduce Stress While Battling Cancer


HealingWell

About Us  |   Advertise  |   Subscribe  |   Privacy & Disclaimer
Connect With Us
Facebook Twitter Instagram Pinterest LinkedIn
© 1997-2023 HealingWell.com LLC All Rights Reserved. Our website is for informational purposes only. HealingWell.com LLC does not provide medical advice, diagnosis, or treatment.