Year 8 for this G9 guy w/bone mets

Thank you for sharing. This is exactly what I needed to hear around the holidays. I was diagnosed with G9 on Feb 17 at 44 years old, the same age as you when you're diagnosed.
It would be really nice if you could share your treatments, diet, lifestyle and whatever you think it might have helped you with your success.

Ash K,

I don’t check into HW as much as I’d like and I apologize for not reaching out to you and some of the other younger guys more often. Getting diagnosed with agressive prostate cancer in your forties comes with unique challenges and trust me I can relate to most of them. If you ever need to talk something out or want to compare notes, don’t hesitate to email me. Sometimes it helps just to know someone else is dealing with something you’re going through.

As I’m sure you are finding out, there is no one way that everyone follows when it comes to therapies, diet, etc... I’ll try to outline my history of treatments, etc... but what I did (and do) isn’t necessarily right or wrong...

My PSA is not an indication of how aggressive or the amount of cancer I have. The highest PSA I’ve ever had was 4.03, yet most of my biopsy was G9 cancer. After that, my PSA never went beyond .09, yet bone mets we’re discovered.

So, I had surgery in 2009 and the pathology showed that it had gone to my seminal vesicles, but not lymph nodes (T3B). After surgery my PSA went from 4.03 to undetectable. Because of my pathology I had adj. radiation with no hormone therapy. Looking back, I should have been more aggressive, but at the time we didn’t have a lot of data on that and early chemo. The new generation of HT(Xtandi, Zytiga) weren’t approved at that time. My thought process at the time was...let’s do surgery followed by radiation, and we’ll have HT if something shows down the road. I also thought I would get a true picture of where I was with my testosterone staying normal and not on HT.

That lasted about a year and half. PSA was back up and I had lesions on my pelvic bones. That’s when I changed my philosophy. I figured if I’m going down, I’m going down swinging. I went on Lupron, Casodex just for a few weeks, spot radiated the spots, started monthly xgeva. I then added Dr. Myers to my team, who has just retired, and he changed the way I looked at agressive prostate cancer. (Dr. Myers was a medical oncologist that dealt solely with prostate cancer. He also was diagnosed with PC that was not contained in the prostate.)

He was a fan of the use of combination therapies vs single agents, and promoted sensitive imaging...so he kept me on Lupron, Casodex, Avodart and a few other things for about a year. He also changed my diet (Mediterranean as best I can) and encouraged arobic and anaerobic exercises. Lastly, he added a few supplements such as Vitamin D, Resveratrol, and Curcumin. It wasn’t so much his therapies that helped me, but he totally changed how I looked at my specific disease.

I then enjoyed 3 years of undetectable PSA and normal testosterone. And then the same thing...rise of PSA and scan showed spot on my rib...so, same thing...spot radiation and hormone therapy...although this time I went on monthly Firmagon shots and a short course of Xtandi. I think I was on HT for a year which stopped about a year ago.

I probably missed something...

I’m not the only G9, Mets, young guy that have gone for a long time. I know a fair number of guys doing really good. I ran into one guy that’s been kicking it for over 20 years. It’s encouraging seeing all the new therapies...Lots of hope out there...again, if you need anything—email me.

Have a Happy Thanksgiving,
Jerrry L.

Jerry,
Congratulations from a G9! As said before, it gives everyone a warm and fuzzy feeling to hear of such success.