Seeking Data ???

[ragnar2020]

I am trying to collect information from men in a specific category. That category is men who have had a radical prostatectomy (RP) and thereafter experienced biochemical recurrence (BCR) and used  proton beam therapy (PBT) radiation as the treatment following that BCR.

I’d like to know several things. These are the questions for which I’m seeking information. If any of my questions are considered private, please feel free to private message me? I do not wish to debate the pros or cons concerning PBT. I have already evaluated these opinions and chosen PBT for my own BCR treatment at the Roberts PB facilities at UPenn in Philadelphia.

1- Where and when did you go for the PBT that you received?

2- Who was your radiology oncologist (RO) at the PBT facility?

3- What was your PSA at the time of your PBT?

4-  Did you have hormone therapy (HT) prior to PBT or after PBT was completed?

5- If you had HT, what drugs did you use and for what duration?

6- How did you find the PBT facility and your RO who treated you?

7- Did you experience any toxic side effects during or following your PBT?

8-  Did you have a PSMA PET CT scan prior to receiving your PBT or after?

9- What was the follow-up protocol for you following your PBT?

10- How are you faring following your PBT? Any further BCR?

I look forward to hearing from as many of you who have time to write? Be well.

[E2-Guy]

Bro,

I experienced BCR post RP and had a 68 Ga-PSMA PET/CT scan done in Melbourne, AU which identified 5 sacral lymph nodes. I allowed my doctor at UCI to robotically remove 8 LNs which was a mistake since there were obviously numerous other infected LNs too small for any imaging to detect. The surgery reduced my PSA by about 50% for less than a year; however, my PSA then began climbing again which is when I started using the E2 gel as ADT.

[ragnar2020 in reply to E2-Guy]

Hi Ron,

Thanks for your reply. Your personal situation and treatments fall outside of my desired group of fellow travelers. I’m looking for what is turning out to be a small and elusive group of men whom have treated their PCa following BCR using proton beam therapy (PBT) as the form of radiation. You used surgery, and many men do the same. Many use combinations of radiation and hormone therapy. I’m looking to communicate with men who have used PBT for their BCR treatments not their primary treatment.

Glad you’re doing well. I follow your posts faithfully and applaud your pioneering spirit.

Jeff

[E2-Guy in reply to ragnar2020]

Jeff,

I didn't think that my reply would answer any of your questions; however, I just thought that I would mention my BCR and what a waste attempting to treat it with surgery was. I never talked to that doctor again who suggested using his surgery to help the problem.

[ragnar2020 in reply to E2-Guy]

Hi Ron,

I understand. Your comment may help others who read it on HU to think carefully about their treatment plans following their own BCR. I know that Imhave spent a lot of time researching T2 gel for ADT when my future treatment choices are reduced to hormone treatment for PCa. Primarily, as you well know, urologists do surgery, oncologists use drugs, radiologists use various forms of radiation, and then there’s many alternative treatments being developed including direct molecular treatments. It is all incredibly complicated and the more information that we collect and can evaluate, the better choices we will be able to make.

Jeff

[GMAN52]

1- Where and when did you go for the PBT that you received? RLP 2014 PSA13.4

BCR 2016 PSA .2 PBT 3/2016 with lupron and casodex from 1/2016 - 12/2017

2- Who was your radiology oncologist (RO) at the PBT facility? RO Dr Gay BJC/Washington U St. Louis MO

3- What was your PSA at the time of your PBT? .2

4-  Did you have hormone therapy (HT) prior to PBT or after PBT was completed? Yes had first six month shot before radiation 1/2016

5- If you had HT, what drugs did you use and for what duration? Lupron and casodex

6- How did you find the PBT facility and your RO who treated you? No problems a few scheduling problems

7- Did you experience any toxic side effects during or following your PBT? Yes had some blood in urine

8-  Did you have a PSMA PET CT scan prior to receiving your PBT or after? No

9- What was the follow-up protocol for you following your PBT? Continue adt

10- How are you faring following your PBT? Any further BCR? Yes have had first PSMA PET SCAN two lymph nodes are showing cancer. PSA rose to 1 6/2020. Completed clinical trial 6/2021. PSA <0.01 currently

[ragnar2020 in reply to GMAN52]

Hi GMAN52,

Thanks for your reply. There does not appear to be a lot of the brotherhood within this specific treatment category, but after a few weeks, I’ll be curious to see how the responses turn out. Thank you for taking the time to respond. I wish you all good luck going forward with your future treatments.

Jeff

[LastMohikan]

you can read my profile, all steps are mentioned one by one. thanks. Umit