Update after a year on vacation

[dorke]

I dont have much to contribute in terms of research and so , but from time to time I update on my situation in hope others can learn from my experience

Background:

DX April 2018 PSA 23 Gleason 9

Pet CT PSMA SCAN April 20 2018:

Bones clear, visceral organs clear ,uptake in prostate escaping the capsule + few pelvic lymph nodes. inoperable

May 2018 started Lucrin (after two weeks of bicalutamide) joined by Abiraterone in June 2018

Done genetics tests,BRCA2 positive

25 IMRT sessions by November 2018

PSA readings for this period of time

May 2018 31 ALKP 101

June 2018 2.44 ALKP 100

August 2018 0.12 ALKP 94

December 2018 0.07 100

Continued with Lucrin + Abiraterone till April 2020

March 2019 less than 0.03 ALKP 98

June 2019 less than 0.03 ALKP 107

September 2019 less than 0.03 ALKP 112

January 2020 less than 0.03 ALKP 117

April 2020 Last Lucrin shot

May 2020 less than 0.03 ALKP 122

September 2020 less than 0.03 ALKP 135

January 2021 0.38 ALKP 130

January 2021 PET/CT PSMA:

Pelvic area clean

focal uptake on rib 9

PSA Feb 2021 (just before SBRT) 1.01

Feb 2021 ,3 session of SBRT to rib

PSA a month after SBRT :0.78 ALKP 156

April 2021 0.25 ALKP 128

April 2021 PET/CT PSMA :

Uptake in rib shrinked significantly

PSA:

May 2021 0.16 ALKP 123

June 2021 0.13 ALKP 131

July 2021 0.13 ALKP 109

Aug 2021 0.12 ALKP 103

Scheduled for another PET/CT PSMA next week

So even after the metastasis found in rib the doctor strongly suggested to continue the vacation after SBRT

I'm aware ADT vacation is controversary and eventually its a medical and personal decision.

I cant say I'm not anxious about not going back at the moment to ADT but when I look back at the time I was treated I was not aware how much ADT impacted negatively on my QOL.

So today ,If I had to choose again between vacation or not I would definitely go for a vacation.

My motto is:

You can add years to your life. I personally prefer to add life to my years

All the best

[V10fanatic]

I officially started my vacation today. I hope it lasts a few years!

[Hidden in reply to V10fanatic]

Great news...Here's to a very long vacation!! 🍻

[jmb23 in reply to V10fanatic]

I've been on "vacation" for almost 4 years now. The latest PSA test came back at .3

[timotur]

Interesting your ALP was rising when the met to the rib was found, and then fell after it was treated, that's a good sign. I'm wondering if you felt the rib met, and where it was located, anteriorly, medially, or posteriorly?

[dorke in reply to timotur]

It was located posteriorly quite close to the vertebrae and I didnt feel any pain

[CSHobie]

Very good information, please tell us how you feel while on vacation. Do you feel better, and in which ways?

[dorke in reply to CSHobie]

Much better. Vitality came back ,feel stronger ,my muscle mass improved, better state of mind, libido

The doctor specifically mentioned few side effects that come with long term ADT:

Osteoporosis , Cardiovascular issues, depression, etc.

I dont fool myself. I know I'll be back on ADT but I thank god that I had a break during this journey in which I could feel kind of normal

[CSHobie in reply to dorke]

Thank you for the reply. It's about Quality of your life, and memories you make with your people.

[Boywonder56]

I want a t shirt.....apc simplified......

[MichaelDD]

I too am at a year this September. Blood and scans of my lungs very much a part of my life still. I asked for QOL over quantity. Over 2+ years of my PSA less then .014. PSA never been the driver of my cancer. So any movement or advancement the scans will be observed with more concern.

Last month I went up to Seattle to visit grandchildren and my son. He said hey let's "go to lunch". Hopped in the plane and flew to Orca Island. Nice to have those special times for awhile. Incredible hamburger and evening flight home after. Enjoy.

Close to heaven for sure ..

[dorke in reply to MichaelDD]

Hi Michael ,read now your bio.Since you had breast cancer and now prostate cancer, weren't you advised to take genetics tests to check if you carry BRCA mutation ?