Veni Vidi Vici - what’s next on this G9 rollercoaster? Let’s find out!

I was diagnosed in January 2013 with what ended up being Gleason 9 (5+4) stage 4 metastatic prostate cancer with mets from my prostate and pubic bones all the way up to my lungs and left shoulder. I have been on constant treatments since then with the exception of close to 60 days in 2016, a break I begged for but was so short lived I never even saw an increase in my nonexistent testosterone.

It’s been a good run. I was told to retire and expect 2-3 years if I was lucky. We’re pushing 8&1/2 as of June 2021. I have been fortunate to travel domestically and internationally with my wife and kids during this time. I watched and was engaged in all of my 3 children’s graduations from high school. My oldest just graduated from college, she was in 8th grade when I was diagnosed. All of these things and more were on my initial bucket list, a list that I have been fortunate to keep adding to, but also a list that has original entries that I fear will remain unchecked.

I have to feel pretty good about what I have survived so far. It was hard fought. I have had to constantly live with changes to the way I live, only to find that each new normal isn’t really a normal, it’s just a way to cope with the things about my life that were taken for granted. Even simple things like being able to urinate and to have a normal bowel movement. ADT brought mood swings, confusion, hot flashes. Chemo came with brain fog, nausea, the room spinning while I clung to the bed so I wouldn’t fall out. Constant pokes and pricks to give blood to determine next courses of action and what we would add to the never ending firmagon or Lupron. Surgeries, radiation, proton therapy. Fatigue and more fatigue. Doubt. Anxiety. Foley catheters. Nephrostomy tubes. More Foley catheters. With a terminal diagnosis, we are always wondering is this the one hurdle we can’t overcome? And then when you do get past it, elation but not much time for celebration because there is always the next procedure, treatment and of course the anxiety that goes along with each success and the scheduled next lab draw. How long will this last? What will my next scans or labs do to my quality of life?

So I guess this post is a vent. I’m frustrated, I’ve always tried to remain positive but it’s getting harder. The last year has been very hard on my body. My fatigue is hard to overcome. My body really feels like it is breaking down. My pain is becoming harder to control. And I just seem to hurt everywhere. And after chemo, radiation, and then more radiation I’m looking at the highest PSA I’ve had since my diagnosis in January 2013. So, even though I just had some scans I don’t have the results yet. I’ll find out next week. So for right now, I’m claiming victory. Veni Vidi Vici. I came, I saw, I conquered. I stretched a 2+ year prognosis to 8.5 years (and counting). I still have goals. I am still looking into the future. Not naively, I’m continuing to prepare for the worst, but I have a decent enough track record to try to plan to enjoy as much as I can along the way. If I can give hope or make people smile, I will try harder than I think I have the energy to to make it happen.

And for those that are interested, I’ll try to keep this thread going to keep you updated on my progress. For now, I don’t have the data that I need to make decisions on what’s next. I’ll have that info next week and I’m concerned and aware that hard decisions may need to be made, some that may put quality of life against quantity of life.

I thought this would be a very difficult post to write. I’m not giving up. I’m still strong enough to try to get my daily steps in (most days, anyway). My limits are becoming more evident though so reality is beginning to keep pace with my determination. I am amazed that I was able to write this post without a tear. I expected to be a river of tears. I’m not sure what that says about me. I have my family, many friends and my faith. I have faith in many things. I believe in doing the right thing. I believe small gestures make enormous differences. And I hope I’m lucky enough to keep this thread going for years rather than months.

This forum has helped me out of a few jams because I had the courage to reach out and share my situation with total strangers. But I’ve never regretted that because of the support I’ve received from those same strangers! I’ve also been blessed to meet several of you in person and feel that the friendships that sprouted are the kind that can’t be complicated by geography or time. Thank you to all of you for the past and hopefully continued support. I’ll do my best to continue to add my 2 cents when I think it’s worthwhile.

Keep the faith and take care!

Thanks for the update and usual candor, Bryan. You are always in our prayers and I can’t thank you enough for the meaningful inspiration you show us.

Thankfully you have the best oncologists that are courageous in applying cutting edge treatment methods that I am sure have greatly extended your earthly life to benefit your family. By sharing your experience many men have learned that it is essential for high risk and advanced diseased men to seek out oncologists that are true experts.

Best wishes on the next iteration of disease management. Lee and I are blessed to know you and always cheering for you.

Jack

Gunner, we’ve never met, but I know your story from not only your posts here, but also from guys talking about you at the GFMPH gatherings I’ve attended. The one thing that always came through is that you are a rock. I can only imagine how hard this has been over the years, but your strength definitely shines through in your post above. I wish you continued strength.. good luck on the scans, I’m praying you get some kind of good news and don’t need to make the “hard” decision.

Hi Gunner... A vent now and then seems most appropriate to the guys who understand the venting. You have been through a lot for many years and with a good attitude to take it all in. And to top it off, you have been supportive of others on their journeys. We just get up every day ready to take another day full life, what else can we do. Take care. -JR

Hello, Gunner34 ~~~

Your post is poignant.

We have some common threads in our treatment experiences, and both of us have benefited from our connection to Mayo Clinic, and the expertise of Dr. Kwon.

I am in my 8th year of survivorship, & we were diagnosed the same year. We both joined up here on Healing Well during the same time frame.

Like you --- the strength drawn from family, friends, and faith is an integral part of my journey since diagnosis day.

I am mindful of you, and the inherent struggle that is part of being on the battlefield.

We are all comrades here. We celebrate the victories, but we stand alongside any fellow here who is in the battle trench.

None of us here are "fair weather friends" ---- we stand together through the storms ---- and we're here for you.

Keep us apprised, following your upcoming consultations.

It's not always an easy path that we walk upon here, but we always draw strength from each other.

Here's to your ongoing tenacity --- your ability to draw value from each day --- and your unwavering trait of always FACING FORWARD.

With all my best, from here in the Midwest !

Camaraderie, fellowship, brotherhood ~~~
CYCLONE ~~~ # Iowa State University

Gunner, so tough to read this, I’m sorry for what you are going through. I know though that as you said, your a fighter and if anyone can get through this next chapter, it’s you. Good luck with treatment please keep us informed so many guys here care about you.

Gunner...wishing you the best with next part of your battle. Your inner strength is inspiring!

Gunner,

Thank you for this post...thoughts and prayers from this g9 brother...

Jerry

Michael, Michael, and Prato
Good to hear from you. And thanks!

Stephen S
Yes, the plan we’ve worked out is to do a few treatments with Cabazitaxel and Carboplatin. Possibly look at some maintenance with Lymparza down the road. And if approval comes through for Lutetium 177 we will be on board if I’m still on the manifest.

Cyclone, yes a rocky road is one way to put it. Hoping it’s smoother than expected without any detours.

Hello, Gunner34 ----

Just a line, on a summer night, hoping you are doing your best.

Hope your CARBOPLATIN and JEVTANA treatments are going well, with manageable side effects.

Sending caring thoughts your way ~~~
CYCLONE - # Iowa State University

I was thinking of him last night.

Sad day for me. as I met him at a GMPH meeting at Worried Guy's house in upstate NY. Blessings to his family as he was an outstanding person. You will be missed by many.
Michael

Very sad indeed. RIP Gunner.